Teddybears' Owner's Life

What's Been Happening

2012-01-05T23:35:00.002-06:00

On Dec. 9th I saw my Neurosurgeon because something didn't feel or look right in the back of my neck. The last neck of Nov. I bent down to turn on my heater (baseboard type) and I felt a pop and a pull in the neck. Since then I get a lot of crunching going on. The Dr. thought it could be a hardware problem, so he sent me for more Xrays.

I went back on Dec. 23rd only to find out I need more surgery, it is scheduled for Jan. 9th. Not sure at this point what he will be doing as my 7th vertebrae decided to come loose.

Been having trouble with my diuretics many cramps in my feet, legs and hands, so my PCP ran extra blood work along with the regular stuff for pre-op. I thought maybe my water pills weren't working and I needed it switched but it was that my potassium is still low again. Now I get to take 3 horse pills instead of 2. Thank God I can take them with hot water to help dissolve them enough to swallow them.

Both Pulmonary Rehab and Physical Therapy are on hold until the Dr. thinks I can go back. I am still trying to get in 2,000 steps a day. Some day I am close to my goal other days I clock in at 3,000. My goal Pulm. Rehab and I have is to be able to get in 5,000 steps a day and still breathe.

That is it for now, have a Blessed day. Deb

My Purpose

2011-12-17T21:23:00.013-06:00

Have you ever wondered why you are put here on earth, what the real purpose of your life is? I have asked these questions and more from my Heavenly Father and as I sit here I share with you some of my insights about my life.

You know through the year we are always to think of others not just at the Holiday times but all the time, I haven't been as good at that as I should but I'm going to try.

I was born into this world 55 yrs ago and I am still here by the Grace of God. Many of my family members have passed away or just left for no reason. Life as I have known it hasn't been the greatest but it was life. One day I gave my life away, actually I gave it back to Jesus and said, "thank you for giving me life and now I give it back to you so you can mold me into the person you want me to be, I will follow you no matter what the cost, no matter what is in store, even unto death, just use me for your Glory", I picked up my cross and never turned back.

As I sit here typing I am crying but tears of joy for the Lord has kept me safe, I might live by my myself but I am never alone, my Heavenly Father is always besides me. I asked Him to use me in anyway He chooses and to guide me on the path.

I have been through many trials, many surgeries, many hardships but still I am here strong in the Lord my faith does not waver. I can not go to church right now but that is okay because I have Jesus in my heart and He knows what is going on with me.

God is good all the time - He allows me to go places that others can not go for He knows I can do it. He uses me to witness to others in hospitals, clinics and to the Drs. One can not do that unless they are put there to do so. We are all called according to His purpose.

God is the ultimate healer and it is always in His time not ours. Sometimes we can get healed instantly, or over time, sometimes it is in our death that we are healed - but no matter how we are healed it is always within God's time table, He is never late.

I close with this: When God closes a door He opens a window so the Blessings can continue to flow. He never closes something before opening something else first.

I was Blessed this year by needing to sell my car - a recent surgery that saved my life also gave me the freedom to live. The selling of my car helped me to be debt free for the first time in my life. I used all the money to pay all my bills. We don't need material things in life to live, we just need to live according to His plans for us. I have given my all to Him and He keeps giving me Blessings on top of Blessings. I am financially okay right now and yet no matter how much I give to others He returns it 10 fold.

My life might be on a rough road right now, but I am thankful to my God I am still working for Him. I am here to be an encourager to others - no matter what I go through I know He gives me the Grace and Strength to keep going. I have one life to live and I chose to live it for Him. It doesn't matter how rough the road because one day my road will lead straight to Him. So if you think it is to hard for you to keep going please call on Jesus and He will carry you just as He does for me.

With Jesus' Love, may you also receive Blessings from above Debbie.

Much has been going on .....

2011-12-13T23:10:00.005-06:00

I have been tied up with Therapy.

My 2nd neck surgery took place on Sept. 13th where both rods and 5 screws needed to be replaced, thanks to a therapist not following direct orders not to do ROM. I was in the hospital for only 1 week, then went home.

I had home care from nurses for 3 weeks, changing bandages and giving me my Axitra shots daily as I couldn't take my Warfarin for almost 1 month.

I began new therapy at a new location called ATI - I go 3 days a week and it has been on going since the 27th of Sept. They do very deep muscle massage, ultrasound and heat treatments every time I go. My muscles in my back and neck have already started to atrophy so much work is needed to be done. I have no range of motion what so ever - I had to sell my car which was a good thing because now I am debt free.

I have finally got excepted into the Pulmonary Rehab center at my local hospital 100% paid for by the local community care program - my insurance would not pick this up because I didn't have COPD or asthma - my nurses eval was today and Thurs will be my exercise eval to get the program going - that will be 2 days a week for 12 weeks. My latest respiratory muscle force was PI max 34, PE max 45. BP 110/70, resting HR 89, pulse ox 95, 6 min walk 150 meters.

They are believing that my muscles for my lungs could be because of the autonomic dysfunctions that are going on. My Kidneys are now showing signs of kidney failure can not go to the restroom without the water pills. I still have iron deficiency anemia for which the iron pills are not working. I see the kidney specialist every 4 months.

Been having problems with my knee replacement had to have another Cort shot yesterday and have to start Nsaid tomorrow, of course I had to get permission from the Neurosurgeon and Hematologist who prescribes my Warfarin, this means possible adjustments.

Oh and we're not to have cranberries because of Warfarin, but I now have to take the pill form of cranberries because I can't seem to fight off the bladder infections I keep getting every 4 months. Never had a UTI all my 55 yrs and I have had 3 this year go figure.

Good News - with all this going on my diabetes is still in remission A1c 5.1%, Lipid panel just done was excellent so my Dr said: total chol. 147, trigs 70, HDL 56 and LDL 77. According to this I am should be healthy, my weight is now 150.

Life has been like a bed of Roses especially for the thrones
that represent all my trials, my favorite color for a
Rose is yellow because it stands for peace. I am
truly at peace with all that has been going on
because I know God has been taking care of me
and not letting me down.

Cervical Repair Done

2011-09-18T19:59:00.002-05:00

I got home last night Sat. the 17th but was too tired to post.

They had to open the entire incision to get at the screws and rods. I got to keep the hardware they removed. The surgery was supposed to be 1-1/2hrs but it was 3. I am in pain due to the surgery, of reopening, moving the nerves and muscles around etc.....

But the horrible pain I was having when I sat up or stood for more than 15mins is gone. Thank God.

I am back to wearing my neck brace again for 6 weeks or longer, go in on Friday the 23rd to get the staples removed. I have a nurse coming in everyday to give me Arixtra shots (heparin) until I am therapeutic in regards to my INR. I have to have daily dressing changes by them as well since I can not do it.

I will be needing more therapy and muscle massage without any Range Of Motion, this will take place after my brace comes off.

As for my girlfriend's funeral I was told it was nice. My friends gave me all the papers that were handed out which was nice. She is in a better place now.

Other than that it is one day at a time until I am healed. Again thanks for keeping me in your thoughts and prayers.

I'm in need of a repair

2011-09-08T07:36:00.004-05:00

Yes you heard right - I'm in need of a repair. My cervical hardware has decided to come a part. I currently have 3 screws that came out of the vertebrae.

Tuesday the 13th I'll be having the screws taken out and replaced. My understanding is they will take out the current screws, fill the holes and drill new holes to accommodate the new screws.

This will not be day surgery, as the Dr told us - it will be to painful for the first few days I'll be put on a pain pump. Should stay in the hospital for about 3 days then go home.

Now I can say I am a pain in the neck and I have a few screws loose. Go ahead and laugh everyone does.

To see the hardware I am talking about go to
http://www.aesculapimplantsystems.com/assets/base/doc/DOC859-S4CervicalSystemBrochure.pdf

I tried to copy the picture but I couldn't. You do not need to read the entire brochure, but it does explain all the equipment used and what they did in the first place on June 6th.

A Long way to go.......

2011-08-21T21:50:00.004-05:00

I started outpatient therapy on the 1st of August. This was just my evaluation so the therapist would know what to do with me.

My Neurosurgeon said no forcible ROM (range of motion). I was to have Ultrasound, massage and stabilization with exercise. Simple right, wrong.

On August 3rd I went for my 1st therapy appt. I did the normal exercises, then the therapist said I needed to do some active ROM, I told him I wasn't allowed to do that, he said yes within reason. He gave me a sheet of paper with the movements on it so I could do them at home.

The next morning I woke up and I was in a horrible amount of pain. I took my muscle relaxer and a pain pill and laid back down. It seemed like every time I sat straight up or stood up for more than 20 mins I would get this severe headache in the top of my head. Nothing would take it away, I had to lay down to get rid of it.

This went on all weekend, so on Monday the 8th I put in a call to my Dr. then I called my therapist, and said I would not be in that day until my Dr. called me and explained why. The associate Dr. called me and asked what happened, I told everything the therapist did and he said do not go back until you see Dr. H again, you'll need new x rays when you see him to make sure nothing was damaged. Oh great just what I needed to hear, the therapist could have damaged my neck.

My appt. with my Dr. was on the 19th, I had new x rays taken and I have 2 screws out of place, inflammation and a pain in the neck. I will need to go for some steroid injections to calm things down, I am not to go back for therapy. Then go back to see the Dr. after my injections to schedule more surgery to put things back in place. In the mean time I lay around a lot to keep the headaches at bay and no movement of my neck what so ever.

Cervical Surgery Completed

2011-08-05T08:15:00.008-05:00

Boy does the time fly by when you're having fun.

My Neurosurgery - Cervical Fusion was done on 6/6/2011

C2, C7, T1 bilateral partial laminectomy.
C3, C4, C5, C6 bilateral complete hemilaminectomy.
C3-C4, C4-C5, C5-C6, C6-C7, C7-T1 bilateral foraminotomy.
C3-C4, C4-C5, C5-C6, C6-C7, C7-T1 bilateral arthrodesis with local autograft and OrthoBlast bone matrix.
C3, C4, C5, C6, C7-T1 cervical instrumentation with Aesculap S4 cervical fixation system.
Decompression of spinal cord.
Electrophysiological monitoring.
Ultrasound.
Harvest local autograft

And to think my original Neurosurgeon said there was nothing wrong with my neck, just live with the pain.

I stayed in the hospital for only 5 days then I was transferred upstairs to the inpatient Rehab. On June 17th they sent me home telling me I was able to do all things by myself.

No joke I was sent home only 12 days after major surgery knowing I live alone - Marilyn made supper for me and shortly after that I went to bed. I awoke the 18th, got somewhat dressed, brushed my teeth and took my morning meds. I was in so much pain I had to lay down couldn't even make oatmeal for breakfast. My tolerance for sitting/standing at that point was only 15 to 20 mins. Yet the Rehab said I was ready to go home and fend for myself. Yeah right.

I am thankful that I had a nurse come to my apt. to give my shot of heparin, because she said there was no way she was going to leave me there alone. My nurse called her boss and told her what was going on and I was told to get a friend over immediately that I wasn't to be left unattended. So I called Marilyn to help me out. Before the nurse left she had me scheduled to go to a long term Rehab Center. She also read my discharge papers from the Rehab to me - stating all the things I could do, make a meal in the microwave, empty the dishwasher, pull things out of cabinets, take a shower independently and could sit up for more than an hour at a time, do my laundry. None of which I could do at all nor ever attempt to do at the Rehab Center. Take a shower by myself - What were they thinking I still had a neck brace on and it could not get wet or be removed until July 15th.

I got to another Rehab Center for long term care in the afternoon of June 18th at 3pm. That is where I found out they mixed up my paper work with another person that had the same name. Also this person was a different race and younger in age. I tell you things we go through now a days.

Within 24 hrs the real records were sent to the long term Rehab Center and my therapy began. I was so bad off I stayed at this Center for 5-1/2weeks. My cell phone didn't work there nor did I have computer access so communication was minimal.

I have been home little over a week and I still have a long way to go before I am to a fully recovered state. I am still in Outpatient Rehab which can take several more months and up to a year to heal.

I am so glad that I have God to look over me and take care of me, so many things could have gone wrong and did but God took care of every little detail. I am still here and on the mend. He always takes care of His own.

What A Month May Has Been

2011-06-02T16:42:00.006-05:00

Here is my update:

Saw Neurosurgeon in early May, told me the surgery I needed and we scheduled it for June 6th. I need to be there by 5:30am, surgery will be at 7:30am. He will be working on 4 levels of my neck through the back to free up the spinal cord. Will be placing 2 rods and screws in to fuse the neck. Hospital stay 4 to 7 days.

Since I have had the neck brace on my sugars are climbing slightly, my blood pressure is now normal 110/70 and I had my first ever normal EKG. So spinal fluid is a must to our bodies. God only knows how long I have been low on fluid. but at least now I will be fixed in that area.

May 11th rectal surgery - it went fine. Today went to get the stitches out still quite sore, I'll see her in 3 weeks for another check up. She said I could have surgery.

On May 20th myself and our maintenance guy tried to stop 2 male ducks from killing a female duck, Paul scared them and they flew above my head and hit me and I went down on my butt. My knee got damaged and I found out on the 23rd I also received a hair line fracture on my left wrist so that now is in a cast. Will be on for 3 weeks or longer. New Xray in 3 weeks.

That is it for now typing is hard, I will post as soon I can following the surgery. Thanks for your prayers.

Day Surgery

2011-05-15T18:01:00.002-05:00

My surgery on the 11th went well. At first we thought it might not happen because of all the delays. But finally at 2pm I had my surgery.

I was told my Dr fixed all that she could. Many stitches so I am being very careful when sitting. And yes I went home at 5pm. Only 3 hours later, a first for me.

I am doing good just taking it easy as my neck surgery is on the 6th of June. More later.

My Current Update

2011-05-10T10:47:00.005-05:00

Just wanted to give you a brief update.

Tomorrow May 11th I am having my prolapse fixed or repaired - it is a day surgery. I was told I go to the hospital in the morning and go home in the afternoon. I am hoping this is true.

We are shooting for the last week of May or first week of June for my neck surgery. That procedure will be a lengthy one, with a 4 to 7 day stay in the hospital He will be cutting out and replacing my vertebrae's at the 4th through 7th levels of my neck with rods and screws. I will blog as soon as I get a date.

I have been in the neck brace now for 5 weeks - will be wearing it until the surgery and for 6 weeks afterwards. I was told I will be having months of therapy and it could take up to a year to heal. I am praying the healing goes more quickly and the surgery is a success this time.

I Am Trying To Get Up To Date

2011-04-17T13:46:00.000-05:00

I haven't been blogging since December so much has been going on. With the Lord's help I have been directed to some new Drs who actually have been diagnosing me properly. I have been told I have this when in reality it wasn't that in the first place but something else. I am doing good now that I am finally getting to the bottom of things.

Here is the most current medical info to date:

Echo/Bubble study: Dr V said it was somewhat normal - the heart monitor report to my Dr said Normal but he ?'d it because he said every time I had an episode my heart rate dropped extremely low. (When I got extremely dizzy). Dr V said the heart monitor and the echo results are not going hand in hand. He needs to looked into it further he said. He did diagnose me with POTS.

Colon: Defecography is scheduled for the 22nd report will immediately be faxed to my surgeon so she can schedule surgery - either a colostomy or a rectal prolapse repair.

Chiari Center: Shocking results - no I do not have Chiari (good news), but I have something worse than that - my neck is in worse shape than my Neurosurgeon thought. I am crushing my spinal cord so much so I am not getting any spinal fluid to the brain. Plus I have 3 new bulging discs above the fusion and more pinched nerves. This is causing my Occipital Neuralgia, can also be causing my colon / bladder problems. I was put in a hard ridged neck brace to take off the pressure from my spine. I wear this 24/7.

Dr H is a Neurosurgeon - who treats patients like me daily. Not a clear cut case. I am to wear this brace for 2 weeks report in any and all changes that happen. Then I wear it 2 more weeks and go in for more tests so he can schedule the necessary surgery to correct the spine issues.

Dr H also told me I have POTS but believes it has been caused from an Autonomic Dysfunction but it also can be caused by the spinal cord problem. Both Dr H and Dr V said I need to be on some meds to stop the action of the Vagus Nerve - that is why he said I am complicated.

At this point you are probably wondering what POTS is so here is the link http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome#Symptoms

As always thank you for your love, support, prayers and Phriendship I could not do all this without you. Deb

Greetings from a dear friend

2010-12-12T23:02:00.006-06:00

Sorry it has been so long in writing. As you know my health has not been the greatest in the past few years. 2009 was the worst year for me having to endure 9 surgeries.

This year in May I needed to have my colon removed for which I spent 21 days in the hospital. Recovery time seemed to be very slow. During my healing time I was given a 45 day noticed to move. I was to move from my apt. to another in the attached building within my complex. My Drs were not thrilled and told me I should not move. Since management wouldn't budge I had to find a way to do this. Many phone calls were made.

With the help of many dear friends from my church and where I live - my packing, cleaning of the old apt. I was able to move on Sept. 3rd. I did not lift anything I wasn't allowed by my Drs. nor could I do the cleaning, I did do some packing but it was just my office and medical supplies. Many women pitched in to help move all the little boxes and 4 strong men from church came and moved all my furniture. I was totally moved out of one apt and into the new one in 5 hrs. A few of my friends who helped move me also came back the next day and unpacked me.

I am still trying to get used to my new apt. it is smaller than I am used to.

On Oct. 8th I saw a new Dr for a 2nd opinion on my Phrenic Nerve and Diaphragm - because 3 Drs believed it is causing my breathing problems - that EMG showed my Phrenic Nerve and Diaphragm are normal and that my breathing issues are caused by my heart and lungs - the EMG that was done in July last year was done too soon after my neck fusion and the readings were incorrect. I am in the process of getting all new Drs. to sort out what is going on. The new EMG did show that I have autonomic distal polyneuropathy in both feet and up the right leg. It is genetic and I was told without the Lord's intervention it can get worse. My feet and legs swell all the time and the water pills do not help it.

Then following my move I was told that I needed a "simple hernia repair". So I scheduled it for Oct. 11th. That surgery resulted in 2 emergency surgeries to stop an active vessel bleed. That made 3 surgeries in 3 weeks. I am on the mend but still dealing with a few new health issues involving my heart and lungs and was diagnosis of Lupus the day of my release from the hospital following the last surgery in Oct.

Through it all God has been with me providing the strength and Grace I have needed to endure and persevere. I have never been alone - He is always with me.

May's and June's Updates

2010-06-30T08:42:00.001-05:00

Okay so I left here in April telling you that my colon biofeedback had to be stopped.

May 3rd I saw my GI Dr only for him to tell me I needed to see my Colon Surgeon as soon as possible. That there wasn't anything he could do for me. Not surprising to me because of all I have been through since January.

May 6th I saw my Colon Surgeon for a surgical consult - she scheduled surgery for May 21st - should be in hospital for 5 to 10 days. She would remove my large colon and reattach the small intestines to the remaining colon/rectum area. A walk in the park for her since this is all she does.

Well on May 21st I had my surgery - she removed 4 feet of large colon and reattached the small intestines to the 10 inches of remaining colon. This was done by robotic surgery so minimal cutting, to help in healing. My small intestines were to stay asleep for about 4 days and then things would be moving around properly in the BM department.

Not me - small intestines woke up within 24 hrs and caused a problem - bled through almost had to have a transfusion, luckily for me things stopped and no transfusion was needed. I was given food for a few days only to have it pulled because my intestines decided to stopped working again. Back to ice chips and minimal water for a week. By this time I was in the hospital 10 days, with no word has to when I could go home. I was told I needed to toot and go BM on a regular basis in order to go home. Four other Drs told us that the only way to battle my problem which is caused by my autonomic dysfunction is to have a colostomy. My surgeon was on board with the idea but was holding out to see what will happen.

Two weeks in the hospital and everything went haywire - I needed to have a pic line put in to get extra fluid and protein since I couldn't eat. What fun. Finally on day 20 a new med was given to produce BM and it worked I was going and going without stopping and tooting so much the entire floor could hear it. So on day 21 -3 weeks after surgery I could finally go home. Which brings us of June 11th.

Been home now just over 2 weeks - I am now going on my own 7 times a day which is totally the opposite of what had been going on - I have needed to stop taking all my colon meds because of this. Follow up with surgeon isn't until the 8th. At which time she needed to tell me if the removal was a good thing or not. I was told that if this happens a colostomy might be my only help well see.

Thanks for reading, that is all I can tell you for now, I will be back when I know more.

Another to receive his wings

2010-05-12T17:01:00.005-05:00

Having PH has it's consequences. It is so progressive with no cure. Some live many years with the right medications, while others don't have a fighting chance.

TW as I knew him lost his battle to PH today. I followed his blog "TW Country Ramblings" for some time but in June last year he stopped blogging. He became very ill. In and out of the hospital. 3 months ago he entered the hospital and today received his wings.

Please keep Judi and the boys in your prayers this is not easy on them, Terry (TW) was only 58.

Aren't Friends Wonderful

2010-04-13T10:52:00.000-05:00

I have many friends that I laugh and cry with. Then I have friends I just talk to on the phone, some I email and some I just pray for.

I have a special girlfriend I have known for years dating back to my home in West Allis. I think I have known her at least 25 yrs. The reason why I even mention this is because she even emails me to tell me she misses my blog and that it is time to update. I think if it wasn't for her every couple months reminding me I would totally forget. Thanks Carol you are very special to me.

As long as I am on the subject I would like to tell you about our relationship and how it became so special. When I first met Carol we bonded immediately we both had children around the same ages. Anyway as time went on she had a few more children - but she had a health condition is which she needed my help - to drive her children to school. So I would send off my children to school - drive to her house - and try to put her children in my car (station wagon) - but it wasn't big enough so I needed to drive her children in their van. To me the hugest van I ever saw - and I had to drive in rush hour traffic with someone else's children to and from school. It was only for a few months because they were going to move to another town and then begin to home school.

Now you are probably wondering why I even mentioned this, well here's why. 21 years later after many of her children were out of her home we were talking about vehicles, we were talking about the same van she had way back in the days of school age children and I got to talking about my transporting her children to school and I finally told her how everyday I was scared to death to drive her van I had white knuckles. I didn't have the heart to tell her because she was my friend and friends do whatever they can to help one another. We laughed so hard when we talked about it. She said why didn't you tell me? Why I said, there wasn't anything you could do about it - you couldn't drive the children to school and besides that's what friend are for.

She has finally given up that van from 25 years ago. Oh the memories of that van. Thanks Carol for your friendship, thanks for being there for me and for reminding me it's time to blog. Love Ya.

April's Updates

2010-04-13T10:07:00.002-05:00

Therapy: I have been in Neuro Therapy 2 days a week and speech therapy 1 day a week. I was told by my therapist she doesn't work on the orthopedic part of me that I needed to go to see my ortho therapist. That ended being 2 days with him as well. 5 days a week in therapy I needed a break. In Neuro therapy they work with balance and endurance she tested my walking for 1 minute at her normal pace. That was a joke - I walked 100 feet - pulse was 124 and I was ready to pass out - her response was I guess you are not ready to do any kind of Pulmonary Rehab. What was she thinking?

With all the therapy going on I was being torn apart. I was so tired I didn't know what to do. Finally I talked to my neuro therapist and asked her what she was trying to do with me and if there was any way my ortho therapist could work with both aspects of my therapy? She talked to Craig and now I am doing only 2 days of therapy.

Colon: I have had 9 weeks of biofeedback for my colon and she stopped my treatments because it isn't working. Well both my colon surgeon and my GI didn't think it would work because my hypo-motility issue is coming from the small intestines not the large colon. Anyway we tried. I see my GI May 5th to see what I am up against.

Pulmonary: I saw my Pulmonary Dr in Feb. and he said I am not getting better but worse and said it will be interesting to see how the autonomic testing shows. He agrees that something is causing my autonomic system to go haywire. He had me do an esophragram because he said if the Phrenic Nerve is not function the esophagus wouldn't be either. That test came back - mild esophageal dysfunction. Another autonomic disorder.

Heart: Somewhere in between all this I received my Echo/Bubble Study showing Left Ventricle Diastolic Dysfunction (LVDD), with impaired relaxation. Right ventricle: wall thickness mildly increased. Right Atrium is mildly dilated. So basically the Dr who saw me in Jan. never told me this I found out when I requested to report 3 times. This test shows I am having heart problems but she said nothing. I did talk to my Cardiologist but there isn't anything he can do for me now because of my consistently low blood pressure. The meds they put people on for this condition drops the blood pressure and for me he said it could kill me. So I have to get worse before I can get better.

I was told by a Rheumatoid Dr that my problem is just Fibromyalgia - but no one is in agreement with her.

Autonomic testing: My autonomic test results came back a couple of weeks ago, my neurologist called me to tell me the news - inconclusive - telling me some tests were normal and others did not give them enough data to give an autonomic diagnosis. She wants me to go to another hospital to have a complete work up because she believes without a true diagnosis as to what is going on I will not get better. Treatment can't begin until they know what they are dealing with. I am now waiting for my PCP to set up the arrangements for UW Madison and get back to me. She has been out with the flu and just got back today.

February's Updates

2010-02-22T17:41:00.003-06:00

I know I am behind again. But here is what I am up to theses days.

1/14 I had my fancy colon test - called Transit Marker Test. That result confirmed the fact I needed to see the colon surgeon on the 28th.

1/18 was blood work - follow up visit on the 25th showed my anemia was gone. No more iron pills. That I still have lupus anticoagulant a clotting disorder - need to stay on my blood thinner meds. I was hoping that changed.

1/19 saw my ortho dr and he ordered more Physical Therapy. I will go back in March for another steroid injection in the hip.

1/21 had an other Echo-bubble test - saw the New PH Dr on the 28th only for her to tell me I do not have PH. She said at the time of diagnosis in Oct. 07, I had what they called a temporary high reading of PH due to the enlarged pulmonary artery that had blood clots going through it at the time. She recommended I see 2 more drs at Froedtert - a Physical Medicine and Rehab Dr (PM+R) as well as a Rheumatologist which is on March 2nd. Dr. Z is also believing that with my Phrenic Nerves, bladder and now the colon nerves being affected that my problem is Autonomically related. She also said to stay with the same Pulmonary specialist because he is the best in his field. She told me that Dr. P is not upset with me just frustrated because he doesn't know what is wrong with me in totality and wants answers so he can better treat me.

I saw the PM+R dr on the 12th and she ordered Neuro therapy with Physical therapy.

1/28 was my appt. with colon surgeon - she ordered a manometry study. Okay now you are up to speed.

Current happenings:

I start my Physical therapy and Neuro therapy the 23rd of Feb. I have no clue what they will be doing or how long, it is 2 days a week for now.

I had my manometry study done of my colon which turned out not good - it told them I have colonic hypo-motility. My colon moves abnormally slow. I am currently in biofeedback because my nerve at the end of my colon is dead. They said that this is an autonomic disorder. The surgeon pushed to have my Autonomic testing done 2 weeks earlier than planned. Which I had done on the 17th of Feb. That was a 4 and a half hour test which I do not want to have to go through any time soon. The results of this test should be here in 4 weeks.

On the 25th this month I go to have another Pulmonary Function Test done to see if Pulmonary Rehab will help me. Right now we are all up in the air as to what will help or not. I will see the pulmonary dr the same day.

A couple of other tidbits: I am completely off my diabetes meds and my sugars are still under great control I have to watch everything I eat. Due to my breathing and swallowing issues at night I was approved to have a hospital bed. It is not a new one like in hospitals now a days, but it is a bed I can sleep in an upright position.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Aside from all this I have a special note for my Phriends at PHA, it saddens me that you have Pulmonary Hypertension a horrible lung disease where there is no cure. When I went to see the new PH Dr I was hoping she could tell me once and for all I had PH. I was looking for this diagnosis for two reasons 1) so we could put a name to what I have been going through, and 2) so that I could relate to you all in a better way. I go to the message boards and I feel helpless so many times, because I can not relate, I feel your pain but I don't have to live with it so I truly do not know how you feel and I can't give input many of the times. I only know what PH is by reading what is out there on the PHA website, and by writing you guys back and forth.

I am thankful that you have taken me under your wings and call me your phriend. I pray that some day you will receive the news that a cure has been found. You have a deadly disease with no cure and that truly hurts. Thank you for always supporting me, caring for me when you have more on your plate than I do. With much Love, Deb

It's A New Year

2010-01-12T16:37:00.003-06:00

It's A New Year - with new beginnings and more changes.

So how has your New Year began? Mine is going to be different with many changes.

I am starting the New Year with a few less medications - I am trying everything I can to put my diabetes in remission. My doctor thinks my June I will be off all my diabetes meds. Also I have 2 new doctors. One for my PH and the other for my colon.

This month alone I have appts. with the Hematologist, Orthopedist, PH Dr and a Colon Surgeon.

The 14th - I am having a fancy test done - I had to swallow this capsule with 25 neon markers - and I go the 14th for an X-ray so they can count the tiny markers to see how far they traveled in my intestines/colon. I am blocked up again. Apparently since my stimulator for my bladder quit working so did my colon. With an increase of fiber and different meds nothing seems to be working.

The 18th - labs to be done for the blood disease, anemia and clotting problems. Results will be given on the 25th.

The 19th - the Ortho Dr. to make sure my hip, knee and shoulder are still doing okay. I had a cortisone shot in the hip last month for bursitis. Might need another one.

The 21st - I go have an Echo-Bubble test done.

The 27th - I go to the New PH Dr. for the results of the Echo/Bubble test and go over all the past tests to see if I do or do not have PH and if she can help me. She will also let me know more about my Phrenic Nerve.

The 28th - is a Surgical Consult with another new Dr. regarding my colon. My GI Doctor doesn't know what else to do - we now know I can't move my bowels on my own because the nerves do not work. I'll have to keep you posted as to what happens next with this.

Could I possibly fit any more tests or doctors appts in one month? I don't think so.

Merry Christmas

2009-12-23T21:07:00.011-06:00

My Christmas Bears (Dave and Josie) and I want to wish you and your families a very Merry Christmas and a Healthier New Year to all. May the Blessing of the Lord be upon everyone this season.

Finally I'm able to blog again

2009-12-06T10:09:00.006-06:00

I want to thank my Lord for sending His angels to look after me during my absence from my blog. I would not be here if it hadn't been for His protection.

Thank you to all who have been praying for me, thinking about me and checking up on me it has been a long 5 months. I will not bore you with all the details but will share briefly as I can what has been going on.

I left you hanging in July with a pending surgery in August. I am truly sorry for not updating since then but as you read you will know why.

August: I went in to have my stimulator adjusted, which was supposed to be a 15 min. procedure. Well they ended up replacing the wires a 2 hr surgery. Recovery was slow and had to spend most of my days in bed. When I went to have the staples removed 2 weeks later I was informed based on my urine journals and test results I would need to have the Stimulator removed totally. Surgery to be scheduled later. Also a biopsy of my muscle needed to be done per my Neurologist.

September: I needed another breast surgery - I was leaking blood for 2 months. Surgery was on the 17th. Much was removed - results came back as 3 ducts were blocked and 1 had ruptured. More recuperation.

Between all this and everything else my computer decided to crash everyday - a friend of mine took it and fixed it - my computer was gone from Oct. 1 to the 20th.

October: I scheduled to have the bladder stimulator removed on Oct. 20th. A simple procedure, go in and go home in an hour right. Nope, the Neurologist said my bladder Dr. could do my muscle biopsy through the butt muscle. So about 2 hrs later I was finally sent to recovery to wait another 2 hrs. I finally got home as the numbing medications were wearing off. Yes I was totally awake - because I was on my stomach for the whole thing. They had to put a drain in so fluid would not back up.

The next 2 weeks after this surgery - I spent in and out of ER's, urgent care, the doctors office and had a friend come down 2 times a day and change my dressings. I could not do this because of the location and the fact they sewed the drain tube in place. At one point I even had to go in to have my drained pulled and another put in and at that time they also they did 5 needle aspirations to help with the fluid build up.

During all this 3 Drs. felt that much of my problems (nerve wise) is possibly related to MS, more tests needed to be done to rule this out.

Muscle Biopsy in the preliminary report the finds were: Myoadenylate Deaminase Deficiency - a Metabolic Muscle Disease. The biopsy was sent for further testing. Still waiting for those findings. Also who I have to see about that.

November: Met with my Neurologist in Waukesha she agrees I should be tested for MS she said all symptoms point in that directions. MRI's were scheduled and so was a lumbar puncture (spinal tap).
I had the MRI's done of my cervical and brain, though I still had my drain in laying flat for 2 hrs I managed to do it. No fun.

My spinal tap was Nov. 11th. The procedure itself was not that bad, three punctures later he had all the fluid he needed and I was off to recovery to lay flat for 4 hrs. I went home to lay flat for the remainder of the day.

Then on Thurs. morning I went to my bladder Dr. to have the drain pulled again 3rd trip only to find out I was still draining fluid so they couldn't take it out.

When I got home my head started to hurt so I went to my discharge papers from the spinal tap only to find out they weren't my papers they had nothing to do with my procedure, so I call the hospital and talked the radiologist who did the spinal tap and he told me I had a spinal headache common in 1 to 10 people. He told me what to do and go to pain management on Friday for a blood patch. I could not sit up longer than 5 minutes at a time, then I had to lay flat for about an hour. On Friday I was told they couldn't do the patch because I just had my drain replaced I was considered a very high risk, so I had to wait until Monday. But they assured me the headache would be gone by then.

Monday Nov 16th I went in as an emergency patient and they did the blood patch - they take blood from you arm and inject it into the puncture. In my case she said I had 3 punctures so that explained why I had the headache so bad. 1 hr later the pain was gone.

Test results of the spinal tap showed no MS (praise God). The MRI's of the cervical and brain showed 3 new herniated discs at the c1, c2, and c3 levels just above the cervical fusion I had in February. Not a common location from what I am told.

That is about it - more tests and some results still pending, I will try to update more frequently, these last few months I just wasn't up to it. Thanks for not giving up on me. Deb/Teddybear.

Getting Closer

2009-07-26T09:50:00.004-05:00

I know it has been a long time for me to post, thank you very much for being patient with me - I have been forgetting a lot of things lately - and blogging is just one of the things I forget.

Many updates to mention ~

Shoulder - Is doing great since the surgery. I still have some range of motion issues but over all I am glad I had the repair.

Sleeping - Is going good - now that I am on the right medicine for the periodic limb movement disorder (PLMD) I can sleep - I do wake at times with the muscle cramps but at least I can go back to sleep within minutes verses hours.

Housing - Awhile back I mentioned about an 185.00 a month increase - well with much prayer I will be staying where I am - my increase will be 165.00 on top of what I already pay. My debt management co. has agreed to lower my pymts by 135.00 a month which will help pay the increase. I have help from anonymous donor for the rest.

EMG - of my muscles and Phrenic nerves to my diaphragm done on the 17th didn't come out as good as I had hoped for - but it is an answer to what might be going on with my breathing etc....

Here's what I know right now:

my Phrenic nerve is only working at 10%.
muscles to my diaphragm are damaged
right lung only working at 50%
left lung at 75%
compromised breathing due to lung disease - and damaged diaphragm

My Dr. is having me do major blood work to see if she can find the cause of muscle damage, she said I am headed for both muscle and lung biopsies. My breathing is becoming harder and harder, she had told me that I am dealing with a progressive disease, she is working hand and hand with my PH Dr so we can "finally" get a true diagnosis as to what is going on.

Stimulator problems - I have a NeuroStimulator implant that works on my nerves for my bladder, apparently the wires have moved and the stimulator is not working properly - so you guessed it - more surgery. I have to have the wires repositioned on Aug 11th. In the mean time I had to add yet another med to help control my symptoms.

I am now waiting for the rest of the tests to be ordered and the results are in then I should have a clear picture of what is next to come. Thanks for reading - I hope and pray I can soon blog more on a regular basis - until then have a blessed day, Deb.

Another Angel

2009-06-15T08:55:00.006-05:00

We have another Angel

Mason our 20 year old who has been waiting for his 2nd pair of lungs has become an Angel. He has been fighting a long time with infections and rejection of the 1st transplanted lungs. He has been in and out of the hospital since November he couldn't fight any more.

In case you have forgotten Mason's story - you can go to my posts on the right - Nov 16th, 2008, Prayer Request for Mason.

Please join us in prayer for Mason's family as I am sure they are suffering from his passing.

In the Wait With Patience

2009-06-04T10:57:00.007-05:00

If your ship has run amuck or sunk to the ocean's floor;

If your heart has given up and you can take no more;

Carry all your woes to Him. Place them in His care.

Know that He will help you through your days of dark despair,

Throughout all times and seasons, ride with them, you must.

Take your problems to the Lord. In Him put all your trust.

Though it may take hours, days or weeks, or even more;

If you have deep faith in Him, He will bring your ship to shore.

My ship is finally coming back to the shore:

I had the colonoscopy on the 19th of May - turns out I have infectious colitis - started a strong probiotic, it seems to be working.

After seeing my Ortho Dr turns out I had to have shoulder surgery on May 20 it went well - a partial tear repair in the anterior of rotator cuff, I was bone on bone with a bone spur - they separated my bones by shaving them down. Still in pain - pt started June 3rd, 2x's/week.

EMG of my chest/diaphragm is July 17th, hopefully we will get to the bottom of my SOB, RHR, etc...

I had to change medicines for my sleep disorder from Mirapex to 15mg of Bacoflen... I am "sleeping at night" still get the periodic limb movements but at least I think I am sleeping about 6 - 8 hrs of sleep a night.

Thank you for the prayers and support during my absence. Been praying for those in need - thinking of you all. Posting is still hard. Deb

Much Awaited Answers

2009-05-09T18:45:00.003-05:00

We know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28

I can't believe it has been over a month since I blogged last April was a busy month for me I'll try to update the best I can.

April 5th and 6th I was in the ER - with what they believe is colitis. I will be having a colonoscope on the 19th of May to confirm it so I can get on the right meds.

April 10th I had an Arthrogram/ct scan on my right shoulder - that showed I have a tear in the anterior rotator cuff, I am bone on bone and have something wedged in between the bones. It took three years of therapy and neck surgery to get the right diagnosis for my shoulder. Surgery is scheduled for May 20th.

I had my 2nd sleep study done on the 15th of April - just got the results on the 5th of May. Turns out I do not have sleep apnea, I do not snore or talk in my sleep. However I do not really sleep at night either. It took 3 and 1/2hrs to fall asleep and within 1 and 1/2 mins my brain decided to wake up. In the 5 and 1/2 hrs I was sleeping my brain woke up 117 times. I also have what they call periodic limb movement disorder (PLMD) different from restless leg syndrome. Where my brain wakes up and tells my feet to cramped up this happened 49 times. So that explains my daytime sleepiness, I don't sleep at night my doctor said it is like my brain won't shut off. Now on new meds for that.

I went to a new Endocrinologist on the 21st. I like this doctor very much. Even though I have no thyroid he will work with me. He will take over my Diabetes, thyroid issues and my cholesterol problems. A few things my primary care doctor doesn't have too. My diabetes is in control but he needs to keep an eye on it since it is a family trait.

Last but not least - my neck surgery was a huge success - no pain in neck, arms or hands. With the exception of my right shoulder but not related to my neck problem. If I didn't have the scar no one would even know I had surgery with a bone fusion. I believe the Lord healed it. The dr said I should be still in pain, not driving and not turning my neck for about another 3 to 5 months. It has been only 3 months since the surgery and I am doing great. Some of my friends who had this surgery 2 years ago are still having problems.

I see my pulmonary doctor on the 13th of May.

That is it for now. I will post when I can. May the Lord bless you and your family. Deb

Forgetting to blog

2009-04-04T10:00:00.001-05:00

I keep forgetting that I have this blog - why? No clue.

I on going to update a little about what is going on in my life.

I was looking forward to getting my test results from my 20hr sleep study. Well, that isn't going to happen until May 5th. Apparently the Sleep Study Center has lost my evening data, my daytime info was already sent to my Neurologist. I will be repeating the night study on the 15th and will be compensated for having to do it again.

I received my results of the blood tests my Rheumatoid Dr. did - too many highs and lows to be Lupus, which is good. But I was looking for an answer. He has referred me to an Endocrinologist and will be seeing me on the 21st. Since I have no thyroid and have been on the proper meds, they need to look into the pituitary gland and the adrenal glands.

My neck is doing great - I believe the Lord touched it - no more pain and I have almost 90% of neck movement. The out come of the surgery did however prompt us to look into my right shoulder - turns out I have a torn rotator cuff. I will be having an arthrogram/ct scan on the 10th to see if my shoulder requires surgery.

Sometime ago I had asked for prayers for Siv due to the passing of her son Nikolas. I believe I also asked prayers for a little boy named Linus. Siv met Linus' family while Nikolas was in the hospital. We have been praying for Linus who also had PH. Well I have to tell you that Linus has also become an angel. He passed away this week. Siv is in need of more prayers - she needs peace and so does Linus' family. To have to deal with 2 infants passing within a few months apart has got to be very hard.

Thanks for reading my blog and being patient with me. I read the other blogs just don't comment - been too tired. Love you and may you have a blessed day, Deb

It's been awhile

2009-03-18T10:46:00.017-05:00

Ecclesiastes 7:13 says ~ Consider what God has done; Who can straighten what he has made crooked?

Have you ever felt like the God has placed you a spot where there is no escape? That is where I feel like I am, between a rock and a hard place. Every time I turn around I am stuck. I know God is there and He is taking care of me, I also believe He has me right where He wants me - totally dependant on Him.

My path may be crooked right now but He will straighten it out when the time is right.

I had to go to my primary care physician last week because I haven't been feeling quiet right. So she ran a bunch of blood tests. They came back with my thyroid off and something about my Rheumatoid Factor being high. So next week I will be going to a Rheumatologist.

She is also thinking my Narcolepsy is resurfacing because I am sleeping more than usual. I am in bed between 10 and 12hrs a night but awake totally wiped out. I have to sleep during the day just to function. So I have not been on the computer much at all. I haven't been reading blogs or commenting or for that matter emailing my friend much (sorry), I am just plain too tired.

I am having a 20hr sleep study done the night of the 26th and day of the 27th to see if it is Narcolepsy or something else going on. My doctor said she doesn't believe my sleepiness is caused by my meds because I have been on them too long to start showing up now.

I am not cooking meals much lately either, as soon as I start them or put them in the microwave I have to lay down, I forget about them and go to sleep. I have had to throw some TV dinners out and had to clean pots from burned on foods, but happy to report no fires or accidents.

I belong to "meals on wheels" 2 days a week. I happened to call to cancel my meal tomorrow, I have a drs appt. and the building managers are gone so it can't be delivered. Mary said she is so glad I called because she had been praying how she can helped someone more due to an extra amount of funds she has recieved - she said she had just finished praying when I called.

As we talked about my situation and my cooking she said she knew where the funds should go and has increased my meals from 2 to 5. I can't tell you how much I appreciate how God has intervened on my behalf through Mary. God is always looking out for us even when we don't know it. He takes care of even the smallest of things our food.

That is all I can think of I right now, I need to go and take a nap. Thanks for reading - and remember no matter what you are going through our Lord knows about it before we do and He is there taking care of it ahead of time. He does put us where He wants us. If I didn't have the Lord within my heart I do not know how I would ever get through anything. God is good.

Here's What's Going On

2009-03-04T09:06:00.003-06:00

You all have been faithful readers - So I need to let you know what's going on.....

I have not been myself lately since last Thursday I have been extremely tired, blood levels wacky, SOB (shortness of breath), swelling up everywhere you name it - it's been mounting - just found out on Monday I have at least 6 autoimmune disorders, I am just fizzled. I can't concentrate so I felt I better not blog or post.

Then yesterday the PH office calls after I left 2 full detailed messages and a return phone #, she calls my home (not the # I left) and tells me not to call her anymore it isn't her problem - my PH Dr is saying I don't PH - so not to call her - I can continue with Dr. P at a different # just don't call her.

She told me on my answering machine to see a plain pulmonary dr who treats just lung problems, and that my PH Dr talked to my Neuro dr and he should treat me. (I already told her 3 times my Neuro Dr will not follow the diaphragm issue) I don't think she really listened to my messages.

My Neuro Dr. disagrees with the PH Dr and therefore will not treat or test my diaphragm. My Neuro Dr feels I need to go back to the PH Dr who deals with the lungs. I feel like a ship in the sea being tossed to and fro and it doesn't know which way to go. I have been praying and reading the scriptures I know it is all in God's hands.

I called the generic pulmonary line today, a live person told me I can't see my regular PH Dr any more, I have to start over. So she tranfers me to another #, you guessed it an answer machine - hopefully she will return my call on the # I provided. To add further to my situation I am still losing weight daily and swelling at the same time, legs, feet, neck, arms, abdomen etc... All I want is concrete answers - the days and months just go bye it has been 17 months and I am still being tossed around. I know I am a puzzle - but please find the missing pieces so I can get on with my life.

I need to have an action plan and I do not have anything. I don't feel adequate to help others on here who really need help - so I stopped posting, I don't feel qualified - so I say nothing. I might be on a lot of meds for many things but not on PH meds. So how can I help? I can't handle all that is going on in my body, all the diagnosis on top of one another have finally got to me.

I found myself crying over something so stupid - my car has to be parked in the under ground parking lot. I washed the day before the neck surgery. It's covered in dust - and people thinking they were funny - wrote - all over my car - in the dust. I got up set and started crying - its my car for pete sake! But no one should have the right to deface someone's car - let a lone draw graffiti on it - I lost it. "I can't clean my car nor will I pay someone to do it" Just leave my car alone.....

One of my wonderful social workers from the hematology clinic I go to once a week is trying very hard to find me a support group attend as well as a 1 on 1 face to face. A support group for someone who deals with multi-medical problems. You are my Pfamily I don't have my family to go to - you have been here day in and day out for me I love you dearly, your support is so greatly needed right now. Will I have to leave you if I only have a lung problem? This site is for PHA people I might not qualify. What do I do?

I did not think this neck surgery was going to be so painful - had to stop the meds because they are making me very sick. So now I sit or lay on the couch and do nothing because of the pain, I can't get comfortable.

Thanks for reading this far down. Love you all thanks for the support. Deb

P.S. I haven't been blogging or commenting so please forgive me - I am however praying for all in need. I just don't know what to say anymore, for that I'm sorry.

A Brief Update

2009-02-19T09:17:00.008-06:00

James 1:2-4 says ~ Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing. (New American Standard Bible)

a brief update since surgery - at present i can only type with one hand so i am not using capital letters so please bear with me. . .

yes, my swallowing is getting better, i am staying on soft foods to be on the safe side. my pills only have to be broken down to 1/4's which is much better than it was, i had to try to crush them. sitting is tolerable with ice packs, laying down is getting better. staying on the pain pills every 4hrs helps.

i have a call into my surgeon about my left arm - besides the 14+ pain i am in (based on their pain scale 1-10), i can't use my left arm at all if it requires bending it.

i know it has to do with the un-pinching of the nerves because my pain meds are not with this. it is not red, there is no warm areas, no lumps, no swelling, so i am thinking it isn't a clot. i have had those in the arm before this doesn't feel like that.

it is like a straight line coming from my arm pit area of my arm all the way down to my palm via the ulnar nerve.

please pray with me that this goes away, it is very hard to do everything one handed and the Grace to get through this. i pray it is temporary and will get better. keeping my left arm hanging down does help. while typing i just lay it on my lap.

i have been reading the blogs as often as i can, i am praying, just not able to comment at this time, please forgive me. thanks for your prayer and support, i will be back when i can.

Surgery update

2009-02-14T12:51:00.002-06:00

Surgery was 2 hrs. They removed 7 bone spurs, freed up my spinal canal (spinal stenosis), removed 2 ruptured discs, put bone in the 2 areas and put me back together with a metal plate and 4 screws. I know people were praying because the surgery went so smoothly. Thank you for your prayers.

I came home the next day and am trying to sleep - I am in a lot of pain - head/neck/arms/hands/ and spinal cord area. Talking is difficult. I do not have a neck brace he said it would cause more problems with constriction on the nerves and muscles. I have minimal movement up and down and nothing side to side. I go back on the 24th for a follow-up.

Healing can take up to 2 months, the Dr said I could be in pain that long as well. My biggest struggle is swallowing - I am on a liquid plan for now, my medications that are a huge problem I can't crush them, I even tried to put them in hot water to dissolve them no luck. I have a pill splitter so I cut them up as small as I can, sometimes they still get stuck.

I will post when I can.

Standing Firm

2009-02-10T17:00:00.007-06:00

Psalm 18:1-2 “I love you, O Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold.”

Matthew 28:20 "Surely I am with you always."

We are never to look ahead to changes and challenges in our lives with fear. We should like look at them with the full assurance that God will deliver us out of them. Hold on to His hand tightly so He can lead us through all things. And when we can not stand, He will carry us.

He will either shield us from suffering or give us the grace and strength to get through it. We are to be at peace and not have anxious thoughts or worries. What can worry add to our lives? Nothing, so why worry just leave it in His hands.

That is how I feel entering into my neck surgery 2/11/09 with total assurance that God will take me through it without harm. I am at peace knowing He will protect me and will guide the surgeons hands. He will help with my healing whether it is with medications or just a simple touch from the Masters' hand.

I will be off my computer for probably one week. Thanks in advance for your prayers. Talk to you soon. May all who read be blessed as well as their families. Love Deb.

Possible Answers

2009-02-06T18:22:00.002-06:00

I wasn't sure how to title this blog. I have been going through many tests to get an answer to why I am having so much problems functioning and breathing, well we think we now know the reason behind it - my thoracic diaphragm.

Let me try to explain - a test they did a week ago called a fluoroscopy - tests how the thoracic diaphragm moves up and down when one breathes, they also did the pulmonary function test (PFT) to see how I breath in and out. The PFT showed mild airway problems in the lungs.

The Phrenic Nerve arises from the 3rd, 4th and the 5th cervical spinal nerves - which works the diaphragm. Following so far? The test showed my diaphragm is not working properly. It could be a direct link to the pinched nerves in my neck. Lord we are praying it is the answer we have been looking for. It has been a long 16 months.

My neck surgery might be a blessing in disguise because I have many pinched nerves in my cervical starting at the 4th level down. The thought is - if they free up the nerves in my neck my diaphragm might work better, then my breathing will get better, as well as my arms and hands.

My PH Dr wants to have an EMG done of the chest and diaphragm to see why it is not moving up and down. Hopefully this test can be done while I am in the hospital. If not I'll have to go back to the PH dr to have it done. They will call me on Monday to let me know what's next.

Thanks for being patient with me in my postings, I am told that my hands will get better with time after the surgery. Only a few days left. Thanks for reading. Love Deb

Updates from this weeks appts.

2009-01-29T20:56:00.004-06:00

Tuesday: Neurosurgeon says - surgery is only 2 hrs, hospital stay maybe 2 days, will go home to tend for myself, follow up appt in 2 weeks, my neck/arms/hands should show improvement within 2 months of surgery, if not than he will have to go in the back of my neck and do more work.

Wednesday: Hematologist - will repeat blood work in a year, said that once a person acquires (gets) lupus anticoagulant it doesn't go away - need to stay on Warfarin for life. I'll go on the shots starting the 4th and remain on them until I'm up to 2.0 INR following the surgery. I will do my INRs at home starting 3 weeks after surgery.

Thursday (today): PH appt. what a joke - Dr P said based on my RHC he doesn't think I have PH but "some kind of lung condition". He says my numbers weren't high enough to be PH.My 6 min walk today was only 150 meters or 452 feet - the same as Oct. no change in the walk, I did lose 8lbs since Oct. - I almost passed out twice and was very SOB. My 02 again started out at 94 and went up to 100. Heart rate went from 80 to 100.

I had a fluoroscope done to see if my diaphragm goes up and down with big breathes I almost passed out there as well and I have to go back next Wed. for a PFT Pulmonary Function Test and blood oxygen gases, I just love those yea right, this test is done in the artery of your wrist.

Dr P is thinking the pinched nerves in my neck could be causing my SOB with movement. He thinks the decompressing of the nerves is the best thing for me right now. I will know more next week after the other tests. He is looking for Interstitial Lung Disease - Pulmonary Fibrosis.

I'm more clueless about the SOB and PH than I ever was, I don't know what to think regarding this.

Other than all that I'm just hanging in there I read and pray - posting is getting harder each day. Thanks for all your love, prayers and support. Talk to you all soon, love Deb

Struggles I'm Dealing With

2009-01-24T10:40:00.027-06:00

Hebrews 4:16 ~ Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.

2 Corinthians 12:9 ~ "My grace is sufficient for you, for my power is made perfect in weakness."

Many of you know I have been going through the wringer - inside I have been okay until last night I actually cried and prayed for 2 hours. My strength does come from the Lord. When I pray for myself it seems like I just touch the surface, prayer to me is always about others first me last. I can't remember that last time I prayed for me like I did last night. I know others are praying for me, so I think I don't need too, I am wrong we need to pray for ourselves as well. We are to carry one an others' burdens - we are to give it all to the Lord including our personal needs.

Here's what's been going on:

The passing of little Nikolas has affected us all - I go to their blog and I still cry - I feel the pain that Siv is going through - it almost feels like I lost another child - a feeling I can't explain.

Tuesday: I got my test results back from the breast surgery good news -No Cancer thank you Lord. It turns out I had an infection brewing with blocked ducts. Thanks to a great surgeon the blocked ducts were removed and the antibiotics will take away the infection.

Thursday my PCP informs me I have Dawn Phenomenon - it is where my body decides to raise my sugars in the middle of the night - so when I wake up and test my fasting sugars they are high. I have been in tight control of my diabetes since I was dx'd last yr. When I asked her if I will be able to get off some of the meds she said "sorry" it's genetic for you, you have no control. So now I have to take more meds this is so frustrating. I can't exercise so I have to watch everything I eat. I have lost 5 lbs since Nov. that is good.

Friday I decided I need a break - so I went downstairs to the Garden Room and learned how to play a card game called hand and foot. You got a wood board to hold all the cards which was good for me. There was 6 of us I being the youngest and eldest was 91. I had a great time. I got to my apt. and had a message on my phone to call the hematologist.

I called them back only for them to tell me I am not therapeutic yet - it's been 10 days since surgery and I should be above 2.0. I can't get there if my life depends on it. I watch everything I eat making sure it does not contain Vitamin K. Even increasing my blood thinners isn't helping, still I'm only at 1.7 on surgery day I was 1.0. I don't get it, she was understanding but what could she say except we need to increase your meds again.

Next Week:

Tuesday: I see the Neurologist to make the necessary final steps before neck surgery - getting more Prednisone and antibiotics prior to, filling out all the paper work and find out if I need to go to a rehab place etc....

Wednesday: I will be having blood work done to see why the Von Willis Brand (bleeding disorder) and the lupus anticoagulant (clotting disorder) are causing havoc in my body. I'm even bleeding a lot from my finger pokes.

Thursday: I go see the PH Dr. and begin treatment for my exercise induced PH, of course that does mean more meds. Please forgive me I am not complaining about taking the meds I am just get tired of taking so many them - I know many of you take a lot more than me.

Friday: I will go to church to do the attendance folders come home and sleep the rest of the weekend. I think I will need it after my long week.

That is it - that's what's going on - I know there is a light at the end of the tunnel, it feels like a long way off. I am not trying to complain about my life, I think I finally woke up and realized all that is going on and I am in more need than I thought.

I know that God's grace is helping me get through all this, there is no way I could do it by myself, I just needed to verbalize what is going on. He never promised us a rose garden without the thorns. Thanks for reading, I'll post when I can, love Deb.

Our Littlest Angel

2009-01-21T11:00:00.009-06:00

Matthew 5:4 "Blessed are those who mourn, for they shall be comforted".

It is so hard to write today - I am sadden to tell you that little Nikolas has gone home to be with the Lord this morning.

Please pray with me for the family - Siv, Jim and their other children Jim and Bikkji Dina. Nikolas has suffered so much from PH and he was only 1 year old.

I have been following Nikolas' story since Oct. I can't tell you many much I have cried and prayed for Nikolas, he truly was a remarkable little boy and fought a hard fight to the very end.

I pray for comfort to Siv and family, that they receive peace that will pass all understanding, strength to endure without Nikolas. May the touch of the Lord be upon this family today and always. Love you Siv, Deb.

Rest is what was ordered!

2009-01-16T10:42:00.007-06:00

I had my surgery on Tuesday the 13th, came home on Wednesday. I just wanted to let you know I am okay, I am to rest as much as possible and do nothing. So I am resting in the Lord's hands.

I take my medication for pain and rest a few hours - I get up eat and go back to sleep. I will not get any results to the large chunk that was taken out until the 20th.

Frozen Ice Outside my Window

My Dr. called last night to make sure I was doing alright and that I was staying indoors, he said I shouldn't go out until my next appt. It has been below 0 the last few days, even schools have been closed. I think I will stay inside where it is warm.

Thank you for all your prayers I will post next week when I know more. Blessings to you. Love Deb.

The Battles

2009-01-12T14:08:00.005-06:00

I few people have asked me how I keep going? My answer is simple - The Lord is my strength, my shield and my strong tower. If I didn't have the Lord with me I know I wouldn't be here.

It says in the Bible ~ 2 Chronicles 20:15, 17 ~ Do not be afraid nor dismayed.... for the battle is not yours, but God's. Do not fear or be dismayed; .... for the Lord is with you.

I haven't been blogging daily because of my hands - the nerves in my neck are effecting my hands - the palm side is cold all the time - the top side is burning 24/7 like someone is setting fire to them. Which is making typing and writing difficult - so I post when I can - it is usually brief.

Tomorrow the 13th of January, I will be having breast surgery so I will not be blogging for about a week - this surgery was just added to my health problems on Dec 31 and booked last week. My PH issues still exist but can't see those Dr's. right now.

There is a book called "PURE JOY!" I have been reading and the following is actually how I feel.

The Battle's Not Yours

The Battle's not yours, it is Mine;

Your Creator and King,

Your Shepherd and Savior,

deliverance I'll bring.

So My child just rest

and be still.

Sit at My feet

and drink your fill;

cease striving to understand,

and know that you never leave My hands.

The battle's not yours, it is Mine.

I am Lord over all,

triumphant and mighty.

My kingdom won't fall.

So My child release to Me your fear,

and know that your Prince of Peace is near.

Take up My Word;

it is your sword,

and know that the battle is the Lord's

it is not yours.

Know matter what we go through He is there taking care of us - it might not be the way we want - but He is there to help us through the battles if we give them to Him. Remember the battles we face are not ours but the Lords.

May God Bless you all - I'll be back in a week - see you then love Deb.

God's Love Surrounds Us

2009-01-05T21:38:00.017-06:00

If we love one another, God lives in us and his love is made complete in us. 1 John 4:12 (NIV)

Today's writing is short and dedicated to Maralyn. I have been following her blog only since November. She has touched me in such away I can't express. Her faith in the Lord was strong, she trusted Him 100%, as each day went by her thirst for Jesus grew stronger. She was an inspiration to many who read her blog. She was diagnosed with ALS 18 months ago, on January 4th, Maralyn peacefully left this earth to be with Him in Heaven. Thank you Lord for allowing us to get to know Maralyn, bless her family abundantly.

In the Bible it says we are to call upon the elders of the church and be anointed with oil and prayed over for our healing. Maralyn believed in miracles, she never gave up her faith. Some healings will only take place when we get to Heaven. That is the ultimate healing.

Proverb 3:5-6 ~Trust in the Lord with all of you heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.

Yesterday is Past -

2009-01-01T17:00:00.022-06:00

“This is what the Lord says, ‘Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland.’” Isaiah 43:16,18,19.

It is with a heavy heart I am writing today - I tried to write yesterday but I just couldn't, so with prayers I begin a new day. We can't change the past or last year but we can make a difference today by standing strong in the Lord.

Jan 1, 2009

Psalm 46:12 says - God is our protector and our strength. He always helps in times of trouble.

The reason for today's post is for us to let go and let God. Have you ever felt like you needed to get away? I know I have, I am feeling like that right now. Jesus has felt that way also (Mark 1:35). How about all the demands - there are so many you can't even take the time for lunch? Jesus can relate (Mark 6:31). What about your friends and family members, have they let you down? When Jesus needed help from His friends they dozed off (Matthew 26:40).....

When we turn to Jesus for help, He runs to us to help. Why? He knows how we feel, He has been there. So please go to Him tell Him your need......He will help.

As I have been reading and praying many things have come to mind that need our attention, and we need to give our needs to Jesus, we are not to carry the burden alone ... Let go and let God.

On the lower right hand side of my entries are many people under the title (My Unique Phriends), I write to them, and pray for them, they need our help. As you read the blogs you might feel the way I feel - that our problems aren't as bad as we might think. We are to put others first and our selves last - that is what I am doing. My problems are small compared to my Phriends. Please join me by reading their blogs and praying for them. I have a prayer list with many names - it isn't my place to say what they are in need of, but God knows - and we are called to lift one another up no matter what the need is....

Here are a few I am allowed to mention: Mason, Cassie, Becky all young adults in dire need of Lung transplants. Without the transplant they might not survive. All living with severe PH. Nikolas the 1 yr old is at home and struggling, in need of prayers. There is Rhett a little boy 3 yrs old with down syndrome who needs our prayers. Not only does he have PH he has much more health issues than you can imagine. Please go to their blogs and read about them.

Then there is the battles in Israel - we know people there - my girlfriend is one - they are in need of prayer for safety. I can't mention their names - but they are on my prayer list.

Maralyn - she a beautiful woman diagnosed with ALS 18 months ago - the day after Christmas she wrote a letter to her family which she shares with us - please read her blog and pray for her. A miracle can still happen.

As for me - I am struggling with much pain in my neck/arms and hands, as I mentioned awhile ago it causes me to have problems with typing, so blogging can't be everyday but my prayers go on. My prayer is for a total healing - if not, the surgery will go on as planned Feb. 11th. I have been told I will get worse before I get better.

I had to have a special test done, called galactogram and it came back abnormal. I will have to have breast surgery soon, it isn't scheduled yet, just got the news on Dec. 31st. As for my exercise induced PH - I am still waiting to get in to see the doctor, with the holidays - no openings. With the right medicines I will be able to function better.

With God's help I too will continue on the path He has chosen for me. May the Lord Bless each and everyone of you, may your new year be brighter and healthier. Love Deb.

Merry Christmas

2008-12-24T17:28:00.011-06:00

Our lives and homes are truly blessed when warmed by the Saviour's love and rest.

It is my prayer that you and your loved ones will be surrounded in the warmth of Jesus' love this Christmas.

A Christmas Blessing

2008-12-23T13:38:00.041-06:00

This Nativity was given to me last Christmas

Luke 2:11-14 states ~ [An angel of the Lord said,] “‘Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.’ Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, ‘Glory to God in the highest, and on earth peace to men on whom his favor rests.’"

Remembering you this Christmas and praying your celebration brings a heart full of joy as you remember God's amazing love shown through His Son, Jesus. May all who read my blog have a Joyous Christmas and a Blessed New Year.

Updates to my other posts

2008-12-19T10:15:00.005-06:00

Snow has hit us again, this is out my bedroom window. Last night starting about 11pm to 8am this morning we received 10" of snow. It isn't suppose to stop until 3pm this afternoon.

We get a break in snow 1 day and it will start all over again. They are saying before all is said and done in the next few days we will be hit with 3 different storms. So glad I don't have to shovel - my prayers go out to those who do for safety.

Okay other updates:

Nikolas has finally gone home. He is the 1 year who they thought wasn't going to make it - the Lord heard our prayers, he left the hospital and is now with his family at home. Thank you Lord.

Mason is still at home - doing okay had an appointment with the transplant team about another lung transplant. Now we pray for directions for the doctors and Mason.

On Wednesday I had my heart catheterization. It has been determined that with the exception of the the flap being open my heart is perfect - no clogged arteries, no enlargements so basically my heart is normal.

I was suppose to be awake for this so I could exercise, however when it came to the time to lift the dumb bells I was sleeping so the nurse had to move my arms. With them moving my arms my pressures did go up which suggests moderate to severe exercise induced pulmonary hypertension. What would the pressures be if I did the exercise by myself?

It makes me wonder how accurate is the pressure test was, when I wasn't doing the work. I called the heart dr to ask that question, waiting for an answer.

I still have an enlarged pulmonary artery - my pressures are coming from my lungs. So now I'm suppose to go back to my Pulmonary specialist to run one more test - to determine what is wrong with the inside of my lungs.

Latest update on housing: God will have to make a way, housing told me they would pay only $21.00 of the $185.00 increase. That makes my rent go up $164.00 a month. So now I will wait on the Lord - currently there isn't any 1 bedroom appts available under the WHEDA program. Was told by housing yesterday people just don't move out because the rents are so good. I have to say I can't blame them I don't want to move either.

Thanks for reading - may the Lord bless each and everyone of you, Deb.

Needing God's Direction

2008-12-15T22:01:00.009-06:00

Matthew 6:33-34 But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Jeremiah 29:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

As the above scriptures state we are to Seek God first - not worry about tomorrow - and He knows the plans He has for me. (My Paraphrase)

This is where I live, in these apartments. Been here 4yrs, I love being here it is like - I'm a princess in a castle. It is as gorgeous in the inside as it is outside. I would love to remain living here. When I moved here the Lord showed me a picture of the building the very one you see here. I went for my tour - and signed the papers the next day. I moved in 2 weeks later.

Today I lay in His hands the proposed rent increase. I am asking for God's direction for this matter. Myself and 7 others were given notice today that as of the end of our leases (mine is Aug. 31, 2009) we will have to give notice to move by July 1, or pay an additional 180.00 a month increase in rent. Since all 8 of us receive help through low income housing I'm asking for prayers that the housing dept. be accepting of the increase and allow us to stay without costing us the entire 180.00 a month. If we have to pay the full increase plus our current rent all 8 of us will most likely have to move. We were presented with other options so that is why the need for prayer - Will you please help me pray for God's direction in my life? Thank you very much for praying with me. I will update on this matter as soon as I know more.

I can't worry about where I am to live or how will I pay for it - the Lord provides for us. All we are to do is bring it to Jesus and lay it at His feet. And that is what I am doing.

Thank you, Deb

Sunshine through the Clouds.

2008-12-14T12:05:00.013-06:00

Isaiah 60:1-2 NIV "Arise, shine, for your light has come, and the glory of the LORD rises upon you. See, darkness covers the earth and thick darkness is over the peoples, but the LORD rises upon you and his glory appears over you.

Numbers 6:24-26 NIV "The LORD bless you and keep you; the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you and give you peace."

I started writing my this yesterday but was too tired to finish it - so I am finishing it today. I realized that there is NOT a day that goes by and His Grace is always there no matter what.

I finally went to church to work on the attendance folders, was all set up working on the computer, (a computer I use when no one is at the spot). Then the person who works at the church for pay, came in asking for her computer suggesting I can you work somewhere else. I just looked at her and said "sure I don't mind moving". I was told I could work there by the office manager - telling me no one uses that computer on Saturdays.

You are probably wondering why I am even talking about this - simple, God's Grace came over me. To move for me meant taking all my stuff - folders, supplies, coat and much more. For me as many know simple tasks are hard and difficult, it is just a struggle just to do the work, so to move was an issue for me - But it was if God was prompting me to move and let her work there. So I went to another computer in one of the Pastor's office to do my work. (I have permission to work there, if he isn't in on that day). The thing that hit me was I could have said many things - but I didn't - I just moved. Aren't we suppose to do things without complaining?

As it turned out I got all my work done up until Jan 09'. Had I been in the front office there would have been to many interruptions and my work would have been delayed - people were coming and going all morning. It pays to do what is right.

Every time I went to the printer for my paper work people stopped by and said hi - did double takes - and would say oh Debbie it's you, really you? At least 4 people looked at me very oddly and made comments like - "wow, you look great", "your face is glowing", "you must be feeling better", "what have you been up to" we don't see you in church. In those moments God had given me the Grace to handle the comments only saying thank you, and I'm okay. As much as I wanted to tell them what was going on, I didn't - I don't think they would have wanted to take the time to listen, I know they would not have understood or excepted it "because I looked great" there can't be anything wrong with me or as much! The Lord knows what wrong with me - my doctors know - and so do my pastors and their wives - as well as my close friends.

Following work I went to lunch with some very dear friends of mine - we talked for about an hour. It was such a good time - we exchanged Christmas Gifts and had a very blessed time. We try to get together at least one time in 4 months - because I can't get to church often.

Then I went shopping for some much needed food - came home totally wiped out - too much for one day. So I rested, went to bed early and awoke at 8:30am. Today I had to begin my heparin shots (it helps prevent blood clots) which makes me sick - so I had to stay home and writing my blog. I will be on the shots for 2 weeks before and after my heart catheterization on Wednesday.

It is amazing to me that no matter how sick I can be - the light of the Lord shines through the clouds and makes me look great. Thank you Lord. Now to only feel as good as I look a healing needs to take place for many. God's Grace is sufficient for me.

Finally an update from me

2008-12-09T09:19:00.016-06:00

John 15:5 and 15:8 [Jesus said,] “I am the vine; you are the branches. If a man remains in me and I in him, he will bear much fruit; apart from me you can do nothing. This is to my Father’s glory, that you bear much fruit, showing yourselves to be my disciples.’”

Hi here in Waukesha, WI we are supposed to get up to 10" of snow today, I am not going anywhere - tomorrow is questionable, I'm suppose to go to church to do the attendance folders as a volunteer. ~ Not exactly my back yard but it is close ~

A Little Update on me:

The hole (PFO) or flap as the Dr calls it - is wide open 24/7 needs to be repaired (closed) - one hitched my Neurologist has to give "proof" that I had TIA's (mini strokes) this summer not just suggestive of. We are working on that. The Neurologist office called today to tell me they will contact the heart dr. to let him know about the TIA's. My Neurologist is the one who realized I was having them and ran the tests.

The pressures in my heart suggest severe (exercise induced) pulmonary hypertension. Meaning I can't do anything without having severe shortness of breath. My oxygen levels are the opposite of many - my 02 is low then as soon as I do anything it goes up. Just the gagging during the procedure Friday told them I have a problem. Still the ? - is it coming from the heart or the lungs? This is a preliminary answer to the TEE - that I had done on Friday - all the results will be back by next Wednesday.

Wed. the 17th my heart Dr is going to do an exercise right heart cath. to check the pressures in my pulmonary artery which is still enlarged. The Dr. said that test will tell him where the problem is. Then they can start treating me with the right drugs.

Besides having the above problems my hands have been becoming more numb, which causes typing problems. A couple of my friends and I chat via audio or webcam, it helps me not to use my hands or fingers. My neck surgery is scheduled for Feb. 11th at which time they will free up the nerves so my hands will work properly again. In the mean time I will post as I can, I read daily and pray for those in need. Thanks for reading Deb.

Answers to our prayers

2008-12-04T18:15:00.007-06:00

Mark 11:24 Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.

Thank you for all your prayers, God has hear and has been answering:

A quote from Mason himself: Im finally back home. What a experince it was. A brief review of it what happened while i was there was, respiratory failure, kidney failure, internal bleeding, c-diff. I spent 10 days on the vent and about 15 in icu. I think about 21 or 22 days altogether. I Have never been so weak after waking up from the vent. I couldnt even move myself in bed about a 10 days ago and now can stand on my own and walk a few feet. Alot of work to go but making progress. Thank you all for your support. I will post more when im a little more alert. I still get dizzy and tired fast.

Nikolas - Is now in his own room - being carefully watched - but out of ICU. He has a long way to go so we need to keep praying for his healing. Nikolas is on alot of meds that are making him sick to his tummy - he needs to get off those meds. Thank you for you continued prayers and support for Nikolas.

As for me I am praying that the (TEE) test will give the drs. answers they need to help me get to a treatment plan - and healing. Blessings to you all.

Nikolas

2008-12-03T07:05:00.004-06:00

Nikolas is a one yr having major problems, many have been praying for- prayers are being answered thank you Jesus.

To view Nikolas's mom's blog - press the label with his name in it. When the site opens it will be in Norwegian - go to http://translate.google.com and have it translated into the language you can understand.

His new pictures tells a thousand words in all languages.

When things go wrong

2008-12-02T22:24:00.007-06:00

What is the first thing we think of when some thing is going wrong -

I'm quitting - don't quit - Keep going.

James 1:2-4

Consider it all joy, my brethren, when your encounter various trails,

knowing that the testing of you faith produces endurance.

When things go wrong, as they sometimes will. When the road you're trudging seems all uphill. When the funds are low and the debts are high. And you want to smile, but you have to sigh. When care is pressing you down a bit. Rest if you must - but don't you quit.

Success is failure turned inside out. The silver tint of the clouds of doubt. and you never can tell how close you are. It may be near when it seems afar. So, stick to the fight when you're hardest hit. It's when things go wrong that you mustn't quit. Author unknown

As I'm trying right this to you all, stop and take a pause, look out there what to you see? I saw the days past when my 2 children were smaller, they knew something was right, just stopped and smile and said mom so it doesn't look right but look you kept going no matter - you didn't quit. We are to keep going no matter what - for the prize is before us. Don't quit - keep going.

Comfort From Above

2008-11-29T16:04:00.017-06:00

My Grace is Sufficient ~ 2 Corinthians 12:9-10 ~ But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Many of you who read my blog are probably been wondering why I haven't written lately! Let me share why....

1)the new medication I am taking has been making me very dizzy and sick, more than I already am - I am having trouble concentrating. It seems just moving my eyes makes things worse.

2)the nerves in my hands are getting worse so typing has been just a tad difficult. Thank you for spell checker. I can't feel my fingers on the keyboard - I have many pinched nerves in my neck causes this - so with God's help I will keep getting my blog out - just not everyday.

Over the last couple days as I was praying for others I realized how much I rely on the Word of God to get me through from one day to the next. I can't get through a day without His help, guidance, comfort and strength. Have you realized where your strength to go on, comes from?

The God of All Comfort ~ 2 Corinthians 1:3-7 ~ Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

May the Lord touch each and everyone of you that reads my blog with comfort and strength, send Blessings to them all, Amen.

Thanksgiving

2008-11-26T17:46:00.016-06:00

Philippians 4:6 Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests by made known to God.

Thanksgiving is a time of year that most people get together to have a special meal and say a prayer for the food and go around the room saying one thing they are thankful for. But for me being a Christian, thanksgiving should be everyday. A prayer given to the Lord saying how thankful we are for all that we have not just asking for things.

Times are rough for many, finances are low, food is minimal and families are at awe with one another. I'm no exception - life it self can be unpleasant. Despite all that is going on around me I have to put Jesus first and thank Him for my life. I thank Him for the food I have, the clothes I wear, the monies I have. I thank Him for my medications I take daily, for my friends that I have. I thank Him for taking care of me.

The call I received a call today was telling me that I will continue to receive 2 free hot meals a week, you might think so, the thing is I called her days ago telling her, she could stop giving to me and give to someone else who really could use them more. She surprised me by saying that I was more in need than anyone else she could think of. She will keep delivering these two hot meals until she felt I didn't need them. There are people reading this blog that don't realize making simple meals are very hard, bending over to put in or take out of the oven can cause me to have trouble breathing. So these hot meals are a blessing.

We were on the phone for about an hour - me thanking her about a dozen times for the meals and telling her how much appreciate what she is doing for me. Then she asked what was wrong with me and ask about PH. I told her my story - come to find out - her best friend passed away from PH awhile ago - she knows what PH was and is but never knew anyone else with it until today. She said she I told you, you are in need of these meals. Though I feel there is someone else out in my area that might need theses meals more - I will receive them with a thankful heart.

The Lord works in mysterious ways - so please be thankful no matter what - be a blessing to someone today. May you and yours have a very Blessed Holiday.

Just alittle update ~

2008-11-25T12:59:00.008-06:00

Colossians 3:15 - and let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful.

Today I am struggling to write - the words don't seen right - my hands are typing the wrong letters. I am not feeling good today, it's 2:30pm and I am still waiting for my doctor to call. I am going back to bed, rest is best on days like today. I have deleted, added, erased more than I am typing so I think I will leave well enough alone. Tomorrow is another day. Blessings to you all.

Thank you for your continuous prayers for Mason and Nikolas they are doing better in small ways.

Update on Mason - Colleen writes -well, our boy wonder is sitting up in bed, and trying to eat a little more solid foods. His doctor saw him sitting up and watching tv this morning, and was completely stunned! He can't believe how much progress Mason is making. Mason is working with a PT, and someone mentioned him coming home for Thanksgiving, but Janet really doesn't think that's going to happen because he is still so weak. Anyway, that's the news I got for tonight! He keeps slowly improving, and everyone is so amazed!! :)

Nikolas - is now moving his legs a little - his mom said he bit her finger while she was holding him, small baby step but in the right direction. Praise God.

In All Things Be Thankful

2008-11-23T14:00:00.003-06:00

Enter His gates with thanksgiving, and His courts with praise.

Give thanks to Him; bless His name. For the Lord is good;

His loving kindness is everlasting, And His faithfulness to all generations. Psalm 100:4-5.

There is always something to be thankful for, not just on Thanksgiving but everyday. Today am thankful for my life. Maybe it's your home, the car you drive, transportation, your family, your friends, your clothes, your food, your finances. The medications, the doctors and nurses, caretakers in your life. These are just a few things to be thankful for on a daily basis. Some go without. I have given my life to the Lord so I can be used to do His work, it doesn't matter what He has called me to do, or if I will be healed as long as I have Him besides me.

Because of your prayers for a few of the many who have PH, they are being touched by God, and that is something to be thankful for.

Mason - has his ventilator off - he is responding in nods and small words. Still in ICU but doing better.

Cassie - is now home and resting, bleeding has stopped.

Shirley - is improving daily.

Little Nikolas - is improving in baby steps, still have a long way to go, but he is still with us.

As for me I'm still here - doing what I can - each day is always different. Today I had all intentions of going to church. I got up in plenty of time, but I was so swollen I looked up and realized I forgot to take my water pill yesterday. I have to take this daily or I fill up with fluid everywhere including my heart. Once I take it, it's like the commercial - I go and go......

I sit here today thinking and thanking God for all He does for me just by asking. It is hard at times to be joyful and thankful when we are going through so much, but it is how I get through my days.

Here is a little something that also helps me keep going - A simple prayer:

Lord, help me believe in what I could be, and all that I am.

Show me the stairway I have to climb.

Lord, for my sake, teach me to take one day at a time.

We should always take one step at a time, and one day at a time. Sometimes it might mean taking a minute at a time or even a half a day at a time. It doesn't matter - we never know what tomorrow will hold for us. God will teach us which way to go if we ask Him. And always thank Him for the way He has chosen for you it does make life easier.

The Yellow Rose of Peace

2008-11-21T13:00:00.007-06:00

The Yellow Rose of Peace ~

“I always thank God for you because of his grace given you in Christ Jesus. For in him you have been enriched in every way – in all your speaking and in all your knowledge.” 1Corinthians 1:4-5.

When I started my home business in 1994 I based it on the above scripture, also I used the Rose as my symbol for my business (floral designing & landscaping). The Rose has a special meaning to me - it represents the God Head Three in One.

The Rose is the only perfect flower made, I believe, the bud so perfectly formed to me symbolizes God - protecting His Son within, the open flower in full bloom is so awesome, breath taking in so many ways - symbolizes Jesus - perfect without sin, the stem with it's throne's symbolizes our sins, trials and tribulations we have to endure. A garden full of Roses always makes me feel like I am in heaven, it is so captivating.

I met a girl down in Chicago in 1994, through a support group for RSD (Reflex Sympathetic Dystrophy) a nerve disorder that causes extreme pain 24/7, that many have but don't know they do until diagnosed. Anyway Kim and I got along like sisters, every time she needed surgery I would go there by train or bus to be with her...she always did the same for me. Strangely her favorite flower was the Yellow Rose. I went to Chicago once a month to the support group, every two weeks for treatments for my RSD. I always would go to lunch or something with Kim when I was in town, for 2 years.

One day in 1996 she called me up and asked if I would be her bride's maid - and could I do your flowers for her wedding, she added all I want is yellow roses. I was so delighted I said yes. There was only one problem she said - due to the RSD my frozen shoulder, how can I carry the flowers? She made an appt. with her treating dr. who said to go see her surgeon.

Kim's surgeon said all she needed was one more surgery on the shoulder and she would be fine. The surgery was scheduled for Sept. 1996, she moved her wedding up to Nov. from April. Her dr. told her she would be ready. Mark was so thrilled as was Kim.

The day of her surgery I could not be there, first time I missed being there, but I had an ortho appt. at the same time in Milw. she was in Chicago. As I was going up in the elevator to my appt. I felt something was wrong with Kim. A small voice said, "I called her home". I looked around to see if anyone else was there talking, but I was alone. God had prepared me ahead of time. I yelled oh no please don't tell me she died! I kept thinking maybe if I had gone there instead of my appt. this wouldn't have happened, but it did.

I got home and in my mail was a card from Kim, also a message from Mark to call him. My heart sank.... the card Kim sent me was the exact same one I sent her two days prior, I thought, this can't be mine. It was not, "My Yellow Rose of Peace" which she wrote....Remember....Someone always cares. Love Your Friend From Afar, Kim. One can't even imagine what I was thinking, I knew before calling Mark, the Lord called Kim home. A peace came over me before I even picked up the phone to call, Mark said thank you for the card you sent Kim, we rec'd it today and I will put it with her in the casket. It was the same one I rec'd from Kim. He said that he is at peace with Kim's passing.

With my leg in a brace, I asked a friend to drive me to the funeral in Chicago - and I layed a dozen yellow roses beside her. Mark and I never met, but when I came in the room with the yellow roses we hugged and cried - we knew who each other was. God brings people in our paths for a reason - sometimes we will never know why. Kim needed a friend who understood what she was going through - RSD. I was the one.

The same with PH, there are so many I have met via the Internet - that I believe God is allowing me to go through PH to be there for others, as He allowed me to be friends with Kim. But a cure needs to be found, there are too many deaths because of PH. So my prayers will continue.

MY YELLOW ROSE OF PEACE

When I give to you a yellow rose
I wish you the peace
That only heaven knows
As you look upon its beauty
And feel the love
Know that our friendship
Is blessed from above

Accept my yellow rose
With love and peace
I pray that your joy in the Lord
Will never cease
When, He comes to take you
From this land
May He walk with you in eternity
Hand in hand
by: Esther Lorenz

The Difference ~

2008-11-20T20:00:00.002-06:00

Mason - Colleen just got off the phone with Janet. Mason is improving a little every day! He's being weaned slowly off the sedation, so he has been much more alert. He is still on the ventilator, but he is starting to breathe a little on his own. The respiratory therapists are working with him every day. He is able to respond to questions by shaking his head yes or no. His doctor is very pleased with how Mason has been improving. I told her we all knew he was a fighter, and he is proving us right!

Shirley - Is the one who just recently had a heart and double lung transplant, she still is in need of prayer, she came home briefly to a relatives house, only to have to be re-admitted in the hospital again.

Nikolas - A 1 yr old is fighting for his life. Now with a blood infection on top of everything else that is wrong with him.

Cassie - A teen in the hospital bleeding from her lungs, they believe they finally have it under control.

When does it end - so many in the hospital - in need of our prayers. Lord I can't even think about myself lately. There are so many more sicker than I am, in much more need of prayer than myself. I briefly talked to my pastor yesterday - telling him all that has been going on. Telling him all I have been doing lately is praying for others - that their need is greater than mine. I am prayer for a miracle for many. Strength to the families of these mentioned they have so much to deal with they can't possibly do it on their own.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

There is a card I keep on my desk as a reminder -

it reads --

The Difference

I got up early one morning

and rushed right into the day.

I had so much to accomplish

that I didn't have time to pray.

Problems just tumbled about

me, and heavier came each task.

"Why doesn't God help me?"

I wondered.

He answered, "You didn't ask."

I wanted to see joy and beauty,

but the day toiled gray ad bleak;

I wondered why God didn't show me.

He said, "But you didn't seek."

I tried to come into God's presence;

I used all my keys at the lock.

God gently and lovingly chided,

"My child, you didn't knock."

I woke early this morning,

and paused before entering the day;

I had so much to accomplish

that I had to take time to pray.

If we don't take the time for Him, how can we expect Him to take the time for us. It is a two way street. He will never leave us or forsake us, but we have to except Him into our lives.

PH Awareness Blogging Day

2008-11-18T09:25:00.052-06:00

PH: the other High Blood Pressure

Parts of today's info is from our "Patients Survival Guide"

Pulmonary hypertension (PH) means high blood pressure inside the lungs (pulmonary means concerning or involving the lungs). The blood pressure measured by a cuff on your arm is called the "systemic" blood pressure, and reflects the pressure between the left side of your heart and the rest of your body (excluding your lungs). Pulmonary hypertension (PH), on the other hand, is more difficult to diagnose and more challenging to treat.

The circulation of blood in your lungs encounters only a fifth of the resistance that circulating blood encounters elsewhere in your body. The vessels in your lungs are very sensitive to increases in pressure: they don't like it, and they respond in complex ways. This response initiates the PH process. PH affects your heart as well as your lungs, but unless your PH is caused by another disease, it appears to start in your lungs. The walls of the blood vessels that supply the lungs get thicker and often constrict. This shrinks (or blocks off) the opening inside them and makes them unable to carry as much blood. It's kind of like what happens when you attach a nozzle to a garden hose: instead of water just sliding our of the hose and falling to the ground, it quirts out with such force that is can knock the leaves off a plant 6 feet away. It can do damage.

As you tighten the nozzle, you might notice the hose itself getting stiffer because of back pressure. This is like what happens when blood can't get through your lungs - the pressure backs up all the way to your heart, which pumps harder and harder to try to push the blood through. Eventually, your heart just can't keep up, and there is less blood circulating through your lungs to pick up oxygen. You become tired, dizzy and short of breath.

Your Over Worked Heart

The heart is divided into four pumping chambers. It is the right side of a PH patients heart that usually has problems. The bottom chamber, called the right ventricle (RV), pumps de-oxygenated blood through the pulmonary valve and into the pulmonary artery, which divides and carries blood to both lungs. If you have PH, your right ventricle has to work so hard to force blood through blocked lung vessels that it bulks up. The RV is not designed to do such hard work; normally the pressure inside it is only 20 to 25 percent of that in the left ventricle.

When pressures remain too high for too long, the RV becomes so stretched out that it cannot contract effectively. This is called congestive right-heart failure or cor pulmonale. ("Failure" does not mean that the heart has stopped, it means that it can't pump our all the blood in it into the lungs.) When your RV fails, there is a backup of pressure into veins throughout your body, and you swell with fluid, especially in your legs, liver, abdomen, and the spaces in your chest surrounding your lungs. In PAH, your right atrium also tends to get bigger, because of back pressure from the RV.

There is good news: when the pressures in your lungs lessen (because of medications or a transplantation of a new lung or both lungs), your heart tends to return back to its normal size. Perhaps after treatment, you may no longer have congestive heart failure. But if your heart has been stressed so long that scar tissue has formed in its structure, it is still damaged.

There is so much information on PH that one person alone can not tell it all please visit our site at http://www.phassociation.org/ and learn as much as you can, you can also visit some of the my friends' site under "My Unique Phriends", (right hand side of the page) they to share alot of on PH as well. there are so many people are suffering with this disease you wouldn't imagine. From infants to adults. Please pray many are in need of a cure or touch from God.

My Personal note:

I have PH caused by the blood clots that went from my heart to my lungs. I make blood clots due to lupus anticoagulant (an autoimmune deficiency) I have, so for now my treatment is to take blood thinners called Warfarin daily to prevent more clots in my lungs. I also have to take water pills (lasix) to help with fluid build up. I am not on medications to treat PH because they still have to rule out if I have a heart problem or just a lung problem or both. PH is VERY hard to diagnose, I first learned about PH in March 08' when I was told I had it.

The Drs. have to keep testing me so that they can figure out what which medications are right for me. Not every medicine out there for PH is for every one - certain medicine are for certain things. But once they diagnosed you with PH, you need to find a PH specialist who deals with PH. At our web site you can find a specialist in your area by going to the section that says "Find a Doctor". Both my heart dr. and PH dr. are working hand in hand to get the proper treatment for me.

Prayer Request for Mason

2008-11-16T14:46:00.013-06:00

Mason really needs our help - I have gotten permission to post the original and updates for you by Colleen who is in contact with Mason's Mom. None of what you read has been edited, it is copied word for word on our PH site. Won't you please help us pray for him, thank you in advance for you prayers.

Lastest Update on Mason - As Reported from Colleen
First of all, since I'm tired of saying Mason's mom, I will call her by her first name. Janet called me a bit ago to say that there was no major change with Mason since yesterday. His o2 sats had dropped a bit at one point, so they had to increase the o2. Mason is still opening his eyes a bit, he also sticks out his tongue, and he's moving his arms. Janet has had to lay on Mason's arms because she just knows he'll rip out the ventilator tube if he gets a hold of it. I think that is the biggest reason why he is still sedated!!

Mason's doctors have said that Mason had internal bleeding in his lungs, which is now stopped. The only conclusion they have come up with as to why this happened is that Mason had a very bad reaction to the photo treatment on Monday and Tuesday. They do not know which part of the treatment caused this reaction, but they are working to figure that out. However, Mason will not ever have the photo again.

Mason's doctor is optimistic that Mason will pull through this, but it's going to take a very long time because Mason's lungs were damaged. Also, Janet said that Mason's doctor is willing to go to bat for Mason in regards to asking for a second transplant. Apparently Kaiser and UCLA work together now on transplants. This is not a guarantee that they will do one, and Mason isn't even close to being ready for one yet. However, it's an option!! Janet will call me again tomorrow with an update, unless something else happens today.

Original Post - Mason has been MIA for a couple days, so I called his mom again tonight to see how he is. He's not good. He is in Kaiser LA ICU again, intubated and sedated. His mom said the docs do not understand what happened. They said he wasn't in rejection. They also said they didn't think he was going to make it overnight (this was Thurs night). Today (Friday), Mason has shown some signs of improvement, but still has an incredibly long road to go. His entire family is in LA right now, and they are all really shook up. Please pray for Mason!! Or have good thoughts for him if you aren't the praying type!! He really needs them right now!! I will keep you updated when I get news!!

Saturday's Update - Mason's mom left a message while I was out. She said Mason needed 2L of blood very early this morning. They don't know why or where he was bleeding. His vitals are not great, but better than when he went into the hospital. They tried to increase the ventilator, but his lungs didn't tolerate it at all, so they had to put it back on a lower setting. So basically he is about the same as yesterday.As for why this all happened....no one knows yet. They do not know if this was a reaction from the photothesis procedure he had on Mon and Tues (to combat the chronic rejection), or if something already was going on before he had it done. They keep doing tests on him to figure this all out. They aren't sure why he was bleeding either, and they were supposed to see if had stopped around 9pm EST. I did call his mom back when I got home, and left a message telling her how much we all are praying for Mason, and we love him and are hoping he pulls through this! She is going to call me back either tonight or tomorrow morning.

Mason's story and picture were included in the "Phriends' Stories" booklets that were passed out at the 3rd Annual Phenomenal Hope for a Cure fundraiser.

Here is his story:

My journey began late in 2005. I was 17, working and going to school full time. I started to notice shortness of breath in the mornings. I thought I was just getting out of shape and didn’t worry too much about it. After a few weeks one morning I was pushing out quads, (I worked at a off-road shop) and became very short of breath and passed out. I was rushed to the ER. They told me I had pneumonia and sent me home on antibiotics. I took about a week off work and rested but I didn’t really feel any better. I went to a few different doctors, but they didn’t know what to do or what I had. One thought it was asthma and the others weren’t sure. One doctor scheduled an echo and x-ray. But I couldn’t wait any longer. So I went to a hospital in CA. It took about a week of tests and evaluations to get a diagnosis of PPH. I was sent to a PH specialist in Los Angeles for a right heart cath. The doctors discovered that my PH was severe and that I needed start on Flolan immediately. I was told that it usually works well and quickly. I didn’t mind mixing or any of the stuff that goes with Flolan. The problem was I had PVOD (pulmonary veno occulsive disease). PVOD is hard to treat. It clogs the veins leading from your lungs to your heart, and causes your pulmonary arterial pressure to rise just like any form of PH. The Flolan lowered my PAP but made my PVOD worse. By February I was bed-bound. If I had to walk more than 100 feet I had to use a wheelchair. I was listed for transplant a few months later and waited 11 months for my transplant. After the transplant I had a great recovery and was a full time walker in the first month. I had 5 months of greatness, no problems at all. Then I got hit with rejection, fungal infection, flu and pneumonia. That has slowed me down a bit and there are still some bumps. But I’m still glad I got it. If I get a few more quality years, I’ll be happy.

Sunday's Update - Mason is still about the same, no more blood tranfusions, which is a good thing. Still very sedated, can't really get him off the ventilator yet, his lungs don't like it. They have him on puffs of air right now, b/c his lungs won't take anything more. They started him on a heavy dose of steroids today since they are not sure if his lungs have an inflammation, or if this is still chronic rejection. His doctor will be in tomorrow morning, and Mason's mom has a lot of questions, so she'll try to call me earlier if she can.

Mason's mom wants to thank you all for the prayers and thoughts from everyone here. I tell her every time I talk to her that we are all rooting for her son!

What does your name mean?

2008-11-16T09:41:00.006-06:00

In 1984 when I became a christian someone gave me a book mark with my name on it. I have kept it to this day. DEBBIE "The Seeker" Psalm 34:10 ....but those who seek the Lord lack no good thing. Proverbs 22:1 A good name is more desirable than great riches....

I have never wondered about my name because I am who I am always seeking to know things, always wanting to find the answer to many questions. I am the kind of person who always tries find different ways of doing things. I am always seeking to know what more the Lord has for me. Or should I say what more can I do for Him.

I am never without the things that I need: food, clothing, shelter, medicines, a car, gas for the car, rides, friends and money even if it is a small amount. The extra stuff is like great riches to me, which I really do not need them, I lack nothing. God is my provider of all things I need.

Isaiah 41:10, says - Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand. Is a scripture that I live by, it goes hand in hand with the fact I lack nothing He will always provide.

Today is Sunday a Church day, but since I am still on restriction until Tuesday, my home is church, God is always here. I miss my church family very much but my health is more important right now. God knows my heart. I have spent much of my day in prayer - that are so many in need of our prayers, if I can't go to church I will wait upon the Lord.

Pray for one another

2008-11-15T10:15:00.008-06:00

Matthew 18:18-20 “I tell you the truth, whatever you bind on earth will be bound in heaven, and whatever you loose on earth will be loosed in heaven. “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.”

We are told in scripture that we are to pray for one another - how many do you know that are in need of prayer? We are to pray without ceasing - please pray for the people you know who are in need God hears our prayers.

Many of our friends are in need of prayer, their health diminishing.

This disease pulmonary hypertension (PH) as well as many others without a cure, special medicines or a touch from the Masters' Hand just plain pass away.

Lord we are in dire need of you touching a young man (Mason) laying in ICU dying, he needs a touch from you. Lord please breathe the breath of life into him right now and make him well again. There is a young woman (Shirley) who just had a double lung and heart transplant that is in need of your help. She is recovering but still needs your touch. Lord thank you for hearing our prayers.

There are children at birth, put on IV's for life because of this disease. It is bad enough that the adults have to deal with this, but the children, Lord please touch the little children, help them to breath easier, restore their little lives so they don't have to live with medicines and/or oxygen 24/7. Thank you for touching their little lives.

This particular disease takes lives of children and adults, it has no respect for any one's life. Please help us pray that a cure or better treatments can come our way so that people can live and not die. In one week alone PH has taken 10 lives that we personally know.

Please go to our web site if you haven't already and learn more about this disease. http://www.phassociation.org/. Thank you for praying with me and others, some day there will be a cure. Thank you Lord for all that you are doing in the lives of our sick.

Between a Rock & a Hard Place

2008-11-14T08:50:00.010-06:00

Psalm 56:13 - For you have delivered me from death and my feet from stumbling, that I may walk before God in the light of life.

This scripture is true for me, I have been pronounced dead 4x's, I've been brought back. Oct '07 I probably should have died yet I am still here. I believe God is using me to tells others my story. He has delivered me from death so I can live for Him.

I have left you hanging since Tuesday and I am sorry - I awoke on Wednesday via the phone ringing - I picked it up but it kept ringing then it dawned on me I have to press talk, funny how these phones work. Anyway, I told the person I did not feel well and could not come in. Not a problem - went back to bed - I was in the bathroom more than not. Yesterday I mostly slept. I am up today with a headache but I am up. My girlfriend's beep on the computer woke me to tell me I left her hanging - so here is the rest of the story from Tuesday.

I like my new heart doctor, Dr K he is very thorough and he works hand in hand with Dr P my PH doc. He asked questions and so did I.

Apparently I have a few things going on not in my favor. PFO's (Patent Foreman Ovule) or hole in the heart in adults can only be fixed or repaired if it is measured to be beyond a certain cm size and/or I had to have a documented stroke.

1. The Echo that was done in March showed the hole to be open 24/7 small at rest and very large when moving, they didn't measure it in cm's. So now Dr K has to actually measure it to see if I qualify for the repair. He is also contacting my Neurologist who dx'd the TIA's (mini strokes) to see if the tests they did, actually has it written down what caused the TIA's if it was the PFO that could qualify me for the repair.

2. The only thing that came back abnormal on the blood tests was the Lupus anticoagulant - it was extremely high, suggesting blood clots daily - will be on Warfarin for life (a blood thinner) - based on 4 different positive readings. The 10 vials taken last week Thursday showed I was normal in vitamins, minerals, anemia and whatever else was tested.

3. Dr K put me in class VI for PH per symptoms. Class IV is the worse, which means severe - one can't do much without having problems. Now Dr K has to go in and find out: is it my heart that is causing the problem or my lungs. He said he agrees I don't have asthma - but believes something is wrong when my 02 goes up when I do anything when it should go down. Just doing a few simple things in his office I just about passed out 2 times. Okay so I am backwards.

4. My TEE (trasesophageal echocardiogram) is scheduled for Dec. 5th, after the test Dr K will give me the results then schedule an exercise heart catherization to see what is going on. He thinks I have exercise induced PH (pulmonary hypertension) but can't prove it based on written reports so he will look himself.

5. No meds can be started for PH until they know what they are dealing with - heart disease runs in my family. So that is why the concern. He did say that I did have PE's in Oct '07 which is what triggered all this. And so I wait. Thanks for reading and the support.

A brief Note

2008-11-11T12:29:00.002-06:00

I am on my way for my Cardio Surgeon's appt. I should get my test results from Thursday as well. I will post more later or tomorrow depending on how I feel. Talk to you soon, Blessings to all who read my blogs.

Veteran's Day

2008-11-11T08:43:00.004-06:00

"The Lord remembers us and will Bless us....." Psalm 115:12

As the Lord remembers us we should pay tribute to all who have served in the armies and wars in years past. Those who gave their lives for us on the battle fields we say thanks. Young and old they should always be remembered - we should to grateful for the ways they provided protection for us. Thank you for giving your lives for us. Thank you for serving our country. For the many who came back - injured they need our prayers for healing, comfort and safety from the traumatic battle you now face, Lord be with them.

For all those for are currently serving we shall lift them up in prayer so that the battle can be won. As Aaron and Hur lifted up Moses arms so they too could win the fight, we shall hold up our troops in prayer. Let us gather together in one accord and pray with our Nation.

A New Day

2008-11-10T11:35:00.005-06:00

I have been praying about different things I could do on my blog site and it came to me to start each one with a scripture of the day.

Today is from Job 37:5-6 - "God’s voice thunders in marvelous ways; he does great things beyond our understanding. He says to the snow, ‘Fall on the earth,’ and to the rain shower, ‘Be a mighty downpour.’”

Did you ever wonder about how all things are made? Where they came from? So many things are beyond my understanding. As for diseases in this world - too many to count - yet we still get them - some of us pass away from them - some people lose the ability to speak, see, walk, yet they keep going. You are probably wondering why I am writing this - it is simple I am asking questions to God as to why!

He sent His only begotten Son to die on the Cross so that we may live, He took the beating so we wouldn't have to, He bore our sins and carried our diseases so we can live. He did all these awesome things for us - and what did we do to deserve them - nothing!

So as I write this today I am pondering "why"! I am ever so grateful for what the Lord has done for me that I need not ask why, I need to be thankful that today is another day I can live.

No where in the Bible does it say we will be without sickness or disease, no one is without, except Jesus. What it does say in scripture that when we get to heaven He shall "wipe away every tear from their eyes; and there shall no longer be any death; there shall no longer be any mourning, or crying, or pain; the first things have passed away." Rev. 21:4.

This disease PH and many others without a cure or a healing people simple pass away. Yes, we have medications to take which I believe is provided for us as a way of Jesus helping us to get to another day. He provides the Drs., Nurses, treatments for our own good - we need to keep taking a day at a time, one step in front of the other. Like the phrase in Footsteps in the sand, we only see one set of footsteps because Jesus is caring us, our burdens can be light if we give them to Him.

If we can't physically walk - He provides wheelchairs, scooters, walkers, crutches and canes. If we can't speak - He provides typewriters, computers, letters, pens and paper. If we can't see - He provides seeing eye dogs, people to help, sign language. If we have trouble breathing - He provides air in the form of oxygen. So if only for only a day, today let us be thankful for what we have and not what we don't.

We have one life to live so why not live it thankfully?

It's wash day

2008-11-08T15:13:00.024-06:00

Today I was able to get up at 8am. Said my prayers and thanked God for another day. No more antibiotics so I hope to stay awake all day.

I went to Wal-mart to pick up some nose stuff and came home. Was gone only 1 hr.

I had 2 loads of clothes to do today, it is a blessing to have our laundry room just a few doors from mine. It takes everything I got in me to do the laundry, 1/2 hr to wash, go back put it in the dryer, the up & down motion gets me extremely dizzy. A half hr later go back and get some of the clothes. I hang up my shirts and slacks right away so I don't have to iron. Where ever I can save my energy I do. Half hr later I go back again to get the rest of the clothes.

Today has been computer catch up day - been trying for 3 months to figure out why I couldn't get into PH's chat room, after 3 hrs of enabling this, that and everything in between I am now able to get into chat. It makes me feel like I just accomplished something when it finally works. I always ask for God's help but sometimes it doesn't go as fast as I'd like.

Today is my "adoptive" spiritual mom's birthday - though she is in Hawaii celebrating their 50th anniversary I called her and left a message so she didn't think I forgot. She gets back Sunday afternoon I believe. She was born the same year as my real mom 1936 - but on the day my mom passed away 11/8. My mom passed away on this day 11/8, 23yrs ago. You know as I think of Kathy's birthday, I still think of my mom with tears of joy, because she is in heaven and someday I'll be there with her, my brother and grandma & grandpa. Kathy has been in my life now for just about 3 yrs. She has survived stage 4 cancer and is going strong like she never had it. I really believe that God puts certain people in our lives for different reasons.

It almost feels like I am going down memory lane. I think I am done on the computer for awhile - I'll go see if anything is on TV. Maybe later I will go to chat with my Phers.

Today and Yesterday

2008-11-07T14:34:00.015-06:00

Today it is now 2:50pm and I just woke up from a very long nap. People do not realize how even the little things we do wipe us out. I had my usual blood work done for my Protime/INR done to check my warfarin (blood thinner) levels I am okay at 2.4. I took my last antibiotic this morning and I just figured out that is also making me very tired. I slept from 11am until now 2:50pm.

Yesterday: I am done with physical therapy, nothing more can be done for my knee, mainly because I can not exercise on land because of my lungs. I am very happy with the range of motion 3 degrees to 103 degrees of bend. The best I have ever had in 15 yrs. God has helped me do this with the dr. and therapist.

Pulmonary appointment: It didn't go as I planned - I thought that since my knee is doing better I could do the 6mw (6 minute walk). Within 2 mins I had to stop, I almost passed out - no air - I was breathing so fast they said I was hyperventilating. I had to stop the walk at 4-1/2mins I was done. Couldn't breath, dizzy etc... It took about 1/2 hr to breath right. My walk was only 150 meters but up from 5 months ago which was 120 meter - then I did my PFT (pulmonary function test). You have to breath in and out in a tube to a machine. That came back abnormal.

My dr being the concerned doc he is said, "I don't think we are only dealing with PH". He mentioned my walk is not normal (no kidding, I knew that). The PFT showed I wasn't getting enough air out of my lungs which he says suggests a lung problem due to Lupus or another autoimmune disease. What bothered him the most he said, was the 02 or oxygen usually drops when walking or exercising - mine went up to normal, when it started out low 90's.

I told him if he is looking for Lupus the test ANA never comes back positive - he said that doesn't matter something is wrong. I had 10 vials of blood drawn looking for anemia, Lupus, Crest and other stuff which I couldn't remember what he said, he is concerned because of the recent bout with pericarditis.

He is sending these results to my Cardio Surgeon so he can order some more tests like a TEE (transesophageal echocardiography), stress echo (exercise echo), RHC (right heart catherization) and whatever else he thinks I need before starting me on PH meds. My last echo was 43, the RHC was 30 so repeats are necessary.

On Tuesday the 11th I see the heart dr and get my blood test results as well as finding out what, when, where, and how the next tests will be done.

As many of my friends know I have been uniquely made. I was never normal or fit in a box. The test results just proved it. Time to go eat lunch I'm getting hungry.

2 appointments today

2008-11-06T19:08:00.002-06:00

I had two appointments today and I am exhausted - I just got home from my 4pm appt. I am going to eat, take my meds and go to bed. I have a 9am INR appt. I am just done in. I will write in the morning.

Where did the day go?

2008-11-05T18:00:00.011-06:00

Where did the day go? I slept 11 hrs last night. I was sleeping by I think 8ish pm. I awoke at 7:15am. It is now 6pm.

I did my Bible reading said my prayers - and felt good so I went food shopping - came home put it away and that was it. I was done, I took another 2 hr nap and when I awoke I just didn't have any energy.

Tomorrow is my appt. with my PH specialist - have to have a pulmonary function test, 6 minute walk, then talk to the Dr. about what has been going on or should I say not going on. Ever since I got sick this last time around I am completely zapped of all energy.

I have my last appt. with Craig my physical therapist at 9am tomorrow for my knee, I would love to cancel it but I have done so 2 times in the last 2 weeks so I have to go. My knee is doing quiet will all things considered. I believe that the 2nd surgery was a blessing from God because my knee has never bent past 90 degrees for 15 yrs. it now bends 103 degrees enough to walk up and down stairs. I can walk down but going up due to my PH it is extremely hard - I have no air or breath to do it. I do take the stairs down as often as I can to keep my knee moving - I rely on the elevator to get back up.

That is it for now - I'll be back tomorrow after 6pm because of my 4 pm appt. Thanks for reading.

Okay I'm up

2008-11-04T07:21:00.013-06:00

There are days in the life of us with PH, where we just have a hard time getting up and functioning and today was an example of one of those days.

I am up, ready to go but want to go back to sleep. Eight hours of sleep for me is just not enough - especially when you don't feel good.

I am off to see my ENT specialist to have my stroboscope done so I can give it to my Neurologist before surgery. I'll be back -

It's 6:30pm and I have been trying to get back to my journaling today but, I have been quite tired since my drs. appt. I came home took 2 phone calls then left to vote. I came home and fell asleep for an hr. Walked to Walgreen's, came home and I am done in.

I will sleep in tomorrow and finish writing - I have already called church to tell them I would not be coming in to volunteer tomorrow and my pastor understood. He said, "my health is more important right now, but please know how much you are needed." That makes one feel good when they say that. Thanks pastor!

Back from my primary care Dr.

2008-11-03T13:26:00.011-06:00

I am back from my pcp dr. apparently I don't have myocarditis as I was told by the ER dr. but actually have pericarditis (inflammation of the tissues surrounding the heart muscle or something like that).

Pericarditis is what my dr said is wrong with me. She believes I got it from the sinus infection (which I still have) - will be treating me 1 more week of antibiotics - Z pack is what I call it. Still running 99.9 fever, pain in the heart, dizzy, SOB and an elevated CK enzyme. She said this certain CK enzyme is suppose to be 1.0 I'm at 5.24. Just a tad high - so I have to lay low. Yeah right - yes she knows about all my appts. I almost forgot I lost 5lbs in 6 weeks.

Stroboscope tomorrow - PH dr on Thursday. Next Tues. meeting with Heart Surgeon.

It's Monday and a new day

2008-11-03T07:37:00.014-06:00

I am awake and dressed - I have a doctors appt. soon to see if my CK-MB is or isn't elevated. I still have the pain in my heart area which could mean is still have that Myocarditis - inflammation of the heart muscle. I am praying that the pain is just a side effect of the medications I was taking for it.

I am needing to get ready to go - so I will post later when I know more.

I am praying my girl friend that move to Israel gets her computer hooked up soon, I know she misses talking to us via email, she also have a way to call me via web cam. I don't have that I'm thankful just for the computer which someone gave to me little over a year ago more like almost 2yrs ago. Anyway it was been a blessing to have.

It just occurred to me why my son, Daniel wrote yesterday it wasn't to talk to me per say but to see if I talk to my daughter Tami who hasn't spoke to us in 14yrs. He is trying to find her as I am but the information I got on her 4 yrs ago was she was married with child to a Daniel, the search engine doesn't say that, if it is my daughter she is with a Matthew. All I can do at this point is pray and maybe God will bring her back to us. Perhaps Tami's friend didn't tell me the truth 4 yrs ago she I wouldn't find her - who knows except God.

Lord this is so hard on us not knowing where Tami is please help us find her and unite our families together again, this I pray in Jesus' name.

Got to go - I can't keep crying it raises the blood pressure and I have a drs. appt. I'll be back.

It's the afternoon -

2008-11-02T14:25:00.010-06:00

And I am still in my PJ's, I might as well stay in them, it's almost time to go back to sleep -

And I just got off the computer chatting with my son, that instant messaging. It was so nice to hear from him. It has been months since he moved to WI. Haven't seen him or my grandchildren since April. My 2 grand kids from my son are Jewlia 6yrs old and Jr. 3yrs old. They are so precious.

Every body's life styles now a days are so busy. It was just so nice to hear that they are doing good. He works at a restaurant doing many things. Like cooking, delivering and bartending.

Fall behind

2008-11-02T09:49:00.010-06:00

Today I tried to get up to go to Church, that is what I used to do every Sunday go to Church. Since last October 07' getting to go anywhere is extremely hard to go. Today I just couldn't get up, kept falling back to sleep, as I journal today I am still in my PJ's.

Daylight savings time really mess's me up for about two weeks, I don't know about anyone else but me it is the pits, why can't time just stay put? Spring ahead and fall behind just is dumb to me.

Tomorrow I have to get up early the van will pick me up at 9am for my Drs. appt. I need to have my blood work re-checked to see if my CK-MB is still elevated, I pray it isn't I don't want any more antibiotics. They make me sicker than I already am.

A different kind of day -

2008-11-01T11:50:00.007-05:00

Today seems to be a different kind of day. I didn't wake up until 9:30am which is rare for me - I woke up feeling strange. Very sick kind of feeling again. My heart is racing, in the restroom more than I'd like to be - I am hoping it's from the antibiotics and not another bug.

As I am typing this I keep wishing I didn't have to take so many meds and I am not on any for PH yet. I am on 12 different meds now - and wish I didn't need any of them. Sometimes I wonder if the meds don't make us sicker than we already are. I guess I will know when I get to heaven if it will matter then.

I feel like I am on a roller coaster ride and just can't get off - and I don't ride them. Maybe some day we all will be well again. That is my prayer.

A typical day for me

2008-10-31T13:54:00.002-05:00

I can't believe it has been a year since my PH diagnosis. Life feels like it is at a stand still.

Last week I thought I had the flu, with a fever of 101.8, sickness every time I turned over. By Sunday evening I started to get extreme pain in my "heart" area. Went to my primary care clinic and they ran tests which sent me to the hospital for more tests. My regular Dr. called me and told me to go to the ER to have my heart checked out - she didn't like my test results.

At the ER - their tests showed I had a sinus infection as well as an inflamed heart muscle called 'Myocarditis". Not a good thing I am learning. I am on antibiotics for the infections will go back to my primary Dr on Monday. More tests will be done to see if I need more antibiotics.

On Thursday, Nov 6th I have to have an PFT, 6mw as well as seeing my PH doctor. Nov. 11th I will see a new Cardio Surgeon, to let me know if he can fix the hole in my heart or what else he can do.

That's it for now - I am still not doing well. I write when I can.

A good place to start

2008-10-26T17:55:00.002-05:00

My name is Debbie, I am 52 years old. I have much wrong with me mainly pulmonary hypertension due to blood clots in both lungs, patent foraman ovule PFO (hole in my heart). Sept 10th, 07', as I was going for my normal daily walk around the Fox River I noticed I had a sharp pain in my jaw and shoulder didn't think anything of it. A week later the same thing happened this time I was having trouble breathing like I couldn't get enough air. Again I said I must have done too much.

My turning point of my life was on Oct 2nd, 07', I saw my primary Dr. she ordered a host of tests - ekg's, echo's, ct scans and blood work. On Oct 5th I got the call - I had to have a heart catherization - I had blood clots in both lungs, enlarged pulmonary artery, fluid on the heart and the list went on.

Was hospitalized Oct 15th, 07' for 6 days. Was put on blood thinners and 8 other medications to deal with all that was going on. My life became a stand still. March 08', I saw my first pulmonary hypertension Dr. and learned I also have a large hole in my heart - a birth defect. Went through more tests. It is now one year later and I still have the shortness of breath, chest pains, rapid heart rate and can not do the easist of tasks like going for long walks, cleaning my house, going up stairs, exercising, making my bed is a challenge so I don't do it, who cares (I live alone).

I have now learned that if I have the hole in my heart plugged or repaired my pulmonary hypertension could possibly resolve itself. I am not on meds for the PH yet- I see my PH Dr on Nov 6th at which time he will decide what route to go.

Prior to all this happening I worked 60 hrs a week, owned a floral business in my home, exercised on machines daily plus walking 3 miles a day. I no longer have my business - it's doors closed in Dec. I am praying a miracle comes our way - I am looking forward to the day I can go back to work and exercise again.

As we renew our strength in the Lord, we will soar on wings of eagles.