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.