December 23, 2009

Merry Christmas

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.

December 06, 2009

Finally I'm able to blog again

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.

July 26, 2009

Getting Closer

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.

June 15, 2009

Another Angel

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.

June 04, 2009

In the Wait With Patience

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

May 09, 2009

Much Awaited Answers

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

April 04, 2009

Forgetting to blog

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

March 18, 2009

It's been awhile

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.

March 04, 2009

Here's What's Going On

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.

February 19, 2009

A Brief Update

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.

February 14, 2009

Surgery update

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.

February 10, 2009

Standing Firm

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.

February 06, 2009

Possible Answers

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

January 29, 2009

Updates from this weeks appts.

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

January 24, 2009

Struggles I'm Dealing With

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.

January 21, 2009

Our Littlest Angel

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.

January 16, 2009

Rest is what was ordered!

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.

January 12, 2009

The Battles

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.

January 05, 2009

God's Love Surrounds Us

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.

January 01, 2009

Yesterday is Past -

“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.