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.

Sunday, June 5, 2016

Facing troubling times

As much as we want to return to our old selves, we have to face the battle. I know for me it has brought me closer to God. My health has been one massive tornado that does nothing but destroy. Sure I still worry about what else is going to come up but overall I feel at ease. What we experience here on earth is nothing remotely close as to what we will experience in heaven.

As time passes by I have learned that no matter what I am dealing with I must always listen to my body. For a couple of months now I've had to battle between my stubbornness and pride. It was hard for me to realize I can not do what I used to do. I can't handle stress, physical work etc without my body shutting down. I was such a huge independent person. I would hardly ever ask for help and that's where the battle with my pride came into play. I had to give in and listen to my body. I am hoping it will bring positive results with my health. I finally broke down and told my boss about all my diseases. To my surprise his girlfriend also has an incurable disease. With that said, he was very empathetic and sympathetic, had no idea I was even sick because I don't look sick and was very much willing to help me. I am so very grateful that I work with such awesome people! I have stepped down from a manager to a part time associate manager. My body just can't handle much anymore. I am hoping I can hang on just a little bit longer. I don't want to give up and give in to my diseases. I will continue to fight the fight until I can no longer fight anymore. I have told all my doctors that I have stepped down to part time due to health issues. That was extremely hard and so depressing. I feel like such a failure but I know I didn't ask for all these diseases. All my doctors agreed that I made the right decision. When you truly think about it, I am dealing with a total of 42 health issues, a lot of them I don't even mention cause they aren't truly a huge concern for me. My true concerns are what I share with you all in my blog and on my personal facebook page. Huh, just realized something, 42 health issues and I'm 42 years old. lol

So much has had happened since my last blog. I have been going through the process of filing for disability again. The paper work alone is so time consuming and so extremely depressing. There is so much detailed information you have to enter and when you have to enter every single thing seeing it in black and white is heartbreaking. Its easy to hide all my diseases under my "you don't look sick" face. If I am not approved I am going to be totally shocked and you can bet I will pursue an appeal if I am denied. Its absolutely ridiculous how the system works. There are so many people who take advantage of the government but yet people like me who have life threatening conditions can't get help.

Lately I haven't been able to eat a few bites without immediately getting nauseated. My muscle weakness is constant and I am just so extremely tired all the time. I recently experienced a very scary situation and I was contemplating on going to the hospital at 11pm one night. I had massive amounts of acid reflux, burping and major heart burn that lasted for over 6 + hours. I'm not talking about a little discomfort, I'm talking about a terrifying pain from mid chest area to back area. No matter what medications I took it wasn't helping. I even took an extra protonix to see if that would help and at least 10 tums. I tried home remedies like, eating peanut butter, yogurt, saltine crackers which all it did was give me more pain. I checked my blood pressure and pulse and it was all in the normal range, so I knew it wasn't my heart. I found a lortab pill that I had to use for dental surgery a couple of months ago and knowing it may worsen my symptoms, I took it anyway. I could tell it helped with the pain because I was able to get a little comfortable to get a few hours of sleep. Now I am deathly afraid of eating and drinking anything. I am still in a little discomfort even. My vomiting has increased to 1 to 3 times a week now. I emailed my doctor in Winston Salem NC regarding my concerns. My doctor emails me and orders to have two tests, Esophageal Manometry and Esophagel PH study. Esophageal manometry is a test used to measure the function of the lower esophageal sphincter (the valve that prevents reflux of gastric acid into the esophagus) and the muscles of the esophagus. This test will tell my doctor if my esophagus is able to move food to your stomach normally. A esophageal pH test measures and records the pH in your esophagus to learn if you have gastroesophageal reflux disease (GERD) which I know I already have but it will help determine the effectiveness of medications I am currently on or if surgery is needed. Basically with this test a thin tube with a device on the tip that senses acid is gently passed through the nose, down the esophagus, and positioned about two inches above the lower esophageal sphincter. The tube is fastened to the side of the face with clear tape. The end of the tube that comes out my nose is attached to a portable recorder that is worn on a belt or over my shoulder. The recorder has several buttons on it that I will press to mark certain events. On that note I am not looking forward to this test but I am curious to know what they find out. I have to stop my acid reflux medication 10 days prior to test. I hope I am okay during the waiting period. I already have problems as it is even being on medication for my GERD. I'm just nervous.

This week I am having hand surgery for my trigger finger aka stenosing tenosynovitis. I was diagnosed with this in 2014 and would have a cortisone shot to ease the pain. Well we tried inflammation medications, more shots and nothing helped. Guess my body is just refusing to cooperate with me anymore. Needless to say the only other choice is surgery. Basically the surgeon will work through a small incision near the base of my affected finger will cut open the constricted section of tendon sheath. Then stitch me back up. Short and simple. Recovery time normally is 3 weeks.

Also this month I will temporally be a bionic woman. On the 20th of June I will have a temporary neurostimulator placed along both sides of my spine. I will have wires going up the spinal area and coming out near my bottom of spine area. Wires will be attached to a battery/recording device for a total of 7 days. On the 27th they will remove the leads (wires) and will discuss with me on how I felt during the 7 days. If it is successful then they will continue to set up a permanent one on later date. If the temporary neaurostimulator did not help to ease or remove the pain then there is no sense installing a permanent device. If that is the case I am pretty much out of luck, There is no other options they can do that they already haven't done. This neaurostimulator is my only and last hope.

Recently saw my endocrinologist and explained to her what procedures, surgeries and tests I am having this month. She was extremely concerned considering I have Primary and Secondary Adrenal Insufficiency. She said make sure all your doctors/surgeons know to give you IV cortisol. I am scheduled to have a bone density test this month to see if the steroids are causing damage to my bones. I hope not but I know it will eventually happen. I have no choice but to take steroids to keep me alive. #Adrenalinsufficiency

As you can tell I am so wanting this month over with. All of the tests/procedures/surgeries are all happening over the next 3 weeks. With that being said, I could really use some prayers.

Friday, January 29, 2016

New Year With New Results

When times get tough I reach for Jesus to give me the strength to keep going forward.

5 1/2 years ago I was given devastating news and I cried my heart out literally.  I knew then that my health would never be normal again and I knew my health would get worse.  Its amazing how much we all take for granted. I am only able to deal with one day at a time.  Some might wonder if I would ever get used to it.  No, I can't.  Every day is different.  I see people every day and I think of how they have no worries when eating a simple meal, to have strength to do things and to not have to worry about whether they took their medications without their life being in danger.  My diseases frustrate me but I know this is my normal and I am trying my best to keep one step in front of the other.

My gastro doctor said that it seems like my stomach doesn't want to work with me anymore.  I have lost more weight and no medications seem to be helping me.  He mentioned that I could take a break from taking Bentyl if I thought it wasn't working.  Perhaps my body has just gotten used to it.  I stopped taking it for about a week but decided to restart after having excruciating pain.  After discussing things over with his practicing assistant they remembered a medication that is currently an experimental drug.  It has helped some people but isn't necessarily a miracle medication.  I was prescribed 5 mgs of Buspirone HCL 3 times a day.  He informed me that it can have a relaxing effect on stomach muscles and since my stomach wont expand, he is hoping it will relax it somewhat in order for me to be able to consume more food.  I am still not able to consume more food. 

I recently had an endoscopy and colonoscopy.  The colonoscopy results came back normal.  I am very thankful for that especially considering my uncle passed away from colon cancer during my youth. The endoscopy showed mildly abnormal mucosa was found in the gastric body and gastric antrum. The mucosa was edematous and erythematous.  No ulcers but multiple biopsies were performed.  I should know the results within a week or so.  My doctor is wanting me to return to my old pain specialist.  I told him the reason why I didn't return was because the pain specialist thought that I needed a spinal cord stimulator to relief my abdominal pain and the thought of it scared me.  He mentioned that maybe he can come up with other solutions but the spinal cord stimulator just very well may be my only resort.  I just might have to give in to my fear in order to get relief.  It is really hard to constantly be in pain.  No position feels good.  Any movement like sweeping for example, I hurt really bad, sometimes to the point where I get nauseated because of the pain.  I am just so sick of the pain.

We all know with diseases your teeth are exposed to a lot of acid, gum and tooth weakness, bone loss etc.  I have had 2 oral surgeries within a month span.  First one was because of a dead tooth.  Second, was a cyst.  Seems like a simple thing but what I am praying for is for the cyst not to return. I was told that if it does return and/or develops in other areas I could be facing yet another rare condition OKC, Odontogenic Keratcyst.  It is basically a very destructive and rapid growth that invades the tissues and bone.  In order to control the cysts a part of the jaw bone would have to be removed.  I was told its not cancer but it is aggressive like cancer.  Needless to say I hope and pray the cyst does not return.  Certainly don't need another rare condition. 

I recently saw my endocrinologist.  Thyroid blood work determined that my TSH was a little low but T4 was normal.  Medication was adjusted a little and will need to return in 8 weeks for recheck.  My doctor is concerned that I haven't had a bone density test since I started on hydrocortisone in 2013 for my adrenal insufficiency.  Unfortunately being on steroids it tends to weaken your bones. She wants me to continue taking vitamin D and start taking calcium pills.  Yeah more pills.

I heard on a Christian radio station recently that there is purpose in our pain and to remind us where our hope is.  This is my new life and I am not letting down.  I learned from my past and I will continue learning my future.  Our Lord gave me the hope I need to continue and I pray every day for his healing hands.