I was thinking the other day about how many doctors I have currently, there are 6 doctors all together; family doctor, insomnia doctor, rheumatologist doctor, thyroid and adrenal doctor, gastrologist and pain specialist. March brought me so many doctors appointments that has really overwhelmed me. If all goes well, April will slow down. Being a manager does have its advantages with scheduling my days off around doctors appointments. However, there's moments when you just wish you could have a day off to relax, tend to your mental needs, without running around from one doctors appointment to the next. I feel extremely blessed having the ability to still function well and work a full time job.
When I get many compliments on my beauty, I can't help but to think to myself that I may look okay from the outside but all my diseases are invisible and no one can tell I am sick just by looking at me. I am always hesitant to tell people that I have 5 diseases. When I do tell people I get some who stop everything and pray for me right then and there. Other times I get these looks like they pity me or disgust from them. What I have is not contagious. I may be different but I still have feelings. We were all given life. Its how you choose the way you live your life is how you can make a difference. I am a positive person and I don't dwell on my sorrow. Yes I get extremely tired, yes I have lost friends and it can be very discouraging but what keeps me head strong is knowing I can do all things through Christ who strengthens me.
Due to my gastroparesis all of my doctors are extremely concerned about me being on pain medications for my abdominal pain. Pain medications tend to slow your system down more with Gastroparesis. With that said they have been avoiding any pain medications all together. Recap, I have had several celiac nerve blocks, latest one worked for almost a week. My pain specialist knows the general location of where my pain was coming from but indicated at this point that my only other option I should consider is a neurostimulation. A neurostimulation is a pain therapy that treats nerves with electrical stimulation rather than using drugs. The device would be surgically placed under my skin and leads along my spinal cord that would provide pain relieve by blocking the pain messages before they reach my brain. I would be able to adjust the strength as needed. Of course, I would be able to experience a temporary neurostimaltor to see if it would work prior to them doing a more permanent surgery. However, the concept of having leads near my spinal cord is very scary for me. It would greatly limit me on my mobility. For those who know me well, I am physically active and love getting my hands dirty in projects. So having physical limitations would be greatly disappointing for me. However, having hardly no pain really does sound like a true blessing. One thing I have learned over the past couple of years with diseases, I miss my old self. To remember life without pain is one you will always treasure. I had an hour long discussion with my doctor regarding the pro's and con's regarding the neurostimulator. With my adrenal insufficiency disease, having a neurostimulator would cause extreme stress on my body. I would have to stress dose with more medications and closely monitor my body to make sure I don't go into shock. A healthy individual the recovery time would be approximately 4 month but for me I would have at least 8 months. There is no way I would be able to do this. Therefore, I have decided not to pursue the neurostimulator procedure. I see it this way, feeling pain means your still alive. The Lord has brought me this far.
After 3 1/2 years from doctors removing my gallbladder and developing Gastroparesis, I have had this pain on the right side of my abdominal area under my right rib. My gastrologist wanted to see if my pain was caused by muscle spasms on my pyloric sphincter and suggested a Botox injection could relax it. I figured it wouldn't hurt to at least try. I had the procedure but after one day, my pain returned. I have noticed the pain is not constant now but when the pain hits now its a strong stabbing feeling. The pain is all of a sudden and it tends to take my breath. At this point since my options are extremely limited, I am to the point to where I just have to suck it up and live with it because I refuse to give up.
I was blessed for a month without having a flare up with gastroparesis. Now its back on full force without vomiting thank goodness. What's amazing is I have a flat stomach is in the morning but by evening, I look like I am 5 months pregnant. The extreme nausea is back and I can not tell you how much I greatly appreciate having Ativan and Zofran. For some patients eating mints or chewing gun seems to help them cope with nausea but for me, I tend to produce too much saliva which makes me even more nauseous. So not worth it for me, so I rely on medications. I have been able to keep my weight stable. I am eating whole foods but still have to keep in mind not to eat more than a cup of food at a time, otherwise I will be in extreme pain because my stomach doesn't expand.
I was diagnosed 17 years ago with Hashimoto Thyroiditis Disease and it has been a constant roller coaster trying to get my levels correct by using medications. No doctor has ever been able to stabilize my levels. It wasn't until 6 months ago that my endocrinologist thought about testing my cortisol. The IV test injection is not a normal tests doctors order but I am extremely thankful she tested mine. I asked my endocrinologist when she thought I would have another cortisol test to make sure I am on the right dosage. She informed me that it would be too dangerous to test my cortisol levels because I am not stable in other areas such as my thyroid and stomach disease. She doesn't understand why my body has such a hard time getting things leveled out but firmly believes its because of my other diseases. For a couple of months now I have developed a new symptom with my primary and secondary adrenal insufficiency, I wake up in a complete sweat. My body and sheets are completely wet. When I spoke to my mother about it, she informed me that my father woke up completely wet at times. My father passed away many years ago, but it makes me wonder if he ever had undiagnosed conditions.
My recent visit with my rheumatologist was rather interesting. I was referred by my family doctor because I tested positive for ANA, Antinuclear Antibodies. She informed me that it is possible to test positive for ANA with Hashimoto but this is the first time I have ever tested positive after 17 years. She indicated that if I develop a rash or sores in my mouth to inform her immediately, which would result in me having Lupus. I have had other symptoms that cause concern, extreme leg cramps and numbness in my finger. Right now she has me on 500 mg of Robaxin 3 times a day. Robaxin is a muscle relaxant that works by blocking nerve impulses that are sent to the brain. It seems to really help me with my leg cramps. I would hurt so bad I would scream out in pain if someone touched my legs. My doctor also has me on 50,000 units of vitamin D for the past 4 weeks. I have another 4 weeks to go to see if the deficiency is gone. Confirmed the vitamin D deficiency has nothing to do with my leg cramps.
I started writing my blog in hopes to help others and raise awareness. Living with 5 diseases is no picnic and certainly would not wish any of it on anyone. I may never understand why I have these diseases but I know one thing, the Lord does not give us what we can not handle and I am fighting till the end.