Thursday, August 4, 2016

Here is to my new beginning...

For me I see having diseases is not a curse, but more like trying to figure out what I am to do and to find something positive out of it all.  Think about this for a moment. How would you feel if you were faced with a disease for the rest of your life? Now how would you feel if you were facing these diseases with no cure?  Seems overwhelming doesn't it?  These diseases take such a huge toll on my health and body.  It tries to take my spirit but trying to stay positive and keep going can be such a struggle.  It wears me out so much and it takes all that I have to keep pushing. Trust me I have bad days, lots of bad days that I feel like I can't go on but I find the courage and inner strength to keep fighting the fight.

Recently I had a Esophageal PH study and Esophageal Manometry.  Received some good news and also bad, which never fails. The manometry test results came back normal.  I am extremely thankful that I have no problems with my esophagus muscle,  Yes they are working properly!  However, I did find out that the PH study was not so good. At first when I heard the results I was thinking, oh well that's not so bad...but she then informed me that the normal person has an acid reflux of 4 % a day. Okay cool.  Well then she told me my result was 20%,  OH! That's a huge difference!  I was in shock! Needless to say I am having to aggressively treat my acid reflux otherwise the acid could cause major problems with my esophagus and aggravate my digestive issues even more.  As of now, I am on 40 mg protonix twice daily, 175 mg of zantec twice daily, galvascon extra strength four times a day.  My doctor is hoping that with this aggressive approach it will help prevent my esophagus becoming permanently damaged. I knew I already had Gastroesophageal Reflux Disease - GERD, but I didn't know I had that much reflux.

For my annoying agonizing pain I've had for over 6 years well, about a month ago had my temporary neurostimulator implanted for 8 days to see if it would help with my upper right abdominal pain.  I was able to control the strength needed to numb the area by using an Ipod device. It reduced my pain in that area at least 90% and controlled my nausea very well. I was thankful for that. However, due to the needles and wires coming out of my back with a battery taped to my outer skin,  I had massive amount of back pain and wasn't prescribed pain medication.

I could never get comfortable, seemed like every move hurt and certainly didn't want to trade one pain for another. I was told that between the needles and the wires perhaps it was hitting a nerve.  I am concerned about the back pain but I was assured the permanent one would definitely be beneficial. The permanent neurostimulator, leads and battery will all be under my skin. I am hoping things will work out for the better. When they removed the temporary neurostimulator within 30 to 45 minutes later I started to experience nausea and upper abdominal pain again.  I finally received the date for my permanent neurostimulator!  August 12th!!  I'm excited and nervous. I just want everything to go smooth.  The video is when the doctor was removing the leads out of my back without any medications I must add....

Recap on my trigger finger surgery.  My finger isn't the same,  I still have finger pain and I still don't have the strength in my left hand.  I have to watch how I use my hand cause the slightest wrong move or pressure on my hand, I will experience pain. My doctor informed me that it may take another 3 weeks before I get back to normal.  Well I will give it one more week.  Its been two months now after my hand surgery.  My tendon is still raised higher than the others and the swelling has reduced a little.  The incision looks great, still a little tender.  I haven't been able to wear my ring on the finger beside it for over a month now due to the swelling. I saw the surgeon to discuss the problems I was still having with my finger and hand.  He informed me on rare occasions some patients develop problems with scar tissue attaching to the tendons.  Needless I am being referred to a scar tissue specialist.  He is hoping that the physical therapy will help me tremendously. I have a follow up appointment in a month.  We shall see where this leads me.  If its not one thing its another.  It just seems that no matter what I do my body rejects every thing done to it.  My body just hates me.

Since I have been on hydrocortisone for my primary and secondary adrenal insufficiency for 3 years now I have not had  bone density test.  You see, taking a steroid it breaks down the bones in the body. I finally had a test done a couple of weeks ago and needless to say I have had bone loss.  My lumbar spinal area bone density is in the low range and in my hips shows early to moderately osteopenic range.  Now I am having to take 1200 mg of calcium a day for bone strength.  If it has reduced it down that much within a 3 year span, it worries me on how my future will be.  I have many risk factors I have to keep in mind; family history of osteoporosis, low dietary intake due to stomach disease, steroid usage of course and low-level bearing exercise.  But we all know I can't do much anyways, besides not having the energy, my body just can't handle doing anything physical.

Well, I would like to end my blog by asking for prayers, strong prayers.  On Friday the 12th of August, I will have surgery for the permanent neurostimulator from St. Jude.  I am scared but eager to see if it helps, and yet don't want any additional pain. I will not be able to do anything for a full week and will have to return for followup visit prior to returning to work. So if you could spare of few minutes please say a prayer for me. Us who have illnesses don't ask for terrible chapters in our lives but the Lord sees it as an opportunity for us to grow closer to him.  I may seem wounded but this is my story and I see me being mended.