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.