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.

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.

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

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