I started this post last year and never went any further than typing it. Hopefully I will do more this year.
The Battle:
Today is the first day of journaling. This is a very hard thing for me to do. I am on a very tough medical roller coaster right now and I am really wanting to get off. However my journey will not end so I guess I need to start accepting that and move on.
On Nov 14, 2014 I started my battled with two torn achilles tendons. I had the left one treated with injection in the bursa, then immobilization in a lovely boot up to my knee for two months. I also had to wear the two black ones in the picture for sleeping. I then did physical therapy and had to wash, rinse and repeat as it got worse after the PT. While wearing the boot I hurt my knee. It was all swollen. I could hardly walk. I went to a specialist on 12/10/2014 for knees and was told I had a torn meniscus and a lot of fluid around my knee. He drained the fluid which gave some relief from the pressure surrounding my knee. Had an MRI two days later.
Decided to live with it for a while and return for recheck in March 2015. Drained more fluid and wants to operate. I want to wait. Return in June 2015. While on the phone making the appointment they are telling me that they really need to operate on this and that is what he is going to talk to you about when you see him. I think this is probably the last time I can push him off. I decide to bring my daughter, Jennifer with me to have a rational mind along with my "I am not doing this mind!" So I brace my self for the doctor to enter the room and give me the news I don't want to hear. Instead he comes in and says I know we told you we need to operate on the meniscus but I don't think it is going to help you out. You will have the operation and 3 months of PT and probably end up with the same issue. HUH??
He said he believes I have something else causing the swelling. He was thinking it may be Lyme arthritis. I had Lyme disease the year before. He drained fluid and sent it to be tested. My primary care doctor calls me the next day and tells me I have way too many white blood cells and I need to see a rheumatologist.
The Diagnosis
My diagnosis is Undifferentiated Spondyloarthropathy (USpA) on June 2, 2015. My first thought was
"If I have a disease with no cure at least you could give me one I can say!"
Clinical manifestations of undifferentiated spondyloarthropathy include the following:
- Inflammatory back pain - 90%
- Buttock pain - 80%
- Enthesitis - 85%
- Peripheral arthritis - 35%
- Dactylitis - 17%
- Fatigue - 55%
I also have fibromyalgia diagnosed on 06/06/2003. As I understand it fibromyalgia effects all my small connective tissue and USpA effects the large connective tissues. Jackpot!
I started taking Humira in September 2015. This is an injectable pen that you take twice a month. I got very sick after each injection. I was actually bed ridden for 2 days with nausea and vomiting. I was given a nurse ambassador resource specialist with the Abby investor program and we were able to figure out that I was actually getting motion sick taking the medicine. She suggested that I take it at bedtime so when the symptom hit I would be asleep. Thankfully that worked.
Humira lowers your immune system to help with inflammation but this means you are more susceptible to things. We are a large Italian family so on Thanksgiving we all eat together. I think we had over 50 people for a sit down dinner at my cousins home. Too many people and a lot of germs. I got sick and remained sick until the week after Christmas. I had to stop Humira for the month of December.
I started with the medicine again in January and did well. It leaves me feeling a bit exhausted but I can handle that. Usually the day after I am tired and have a headache. It has been a half year and I see no improvement. I am having trouble sleeping which makes me irritable in the day. February my doctor increased Gabapentin (NEURONTIN) 300 MG to two tablets along with the two Tizanidine muscle relaxer 4 mg tablet that I take at bedtime.
Pain is increasing, in my arms mostly in my neck and across my back. I cannot easily put on or take off my bra. Putting on a coat or jacket is tough. Even putting the seat belt on is a challenge. For about two weeks I had a pain in my left hip buttock so severe I couldn't stand on it when getting out of bed in the morning or standing after sitting for awhile. Thank God that went away! The medication I take in the day is traMADol (ULTRAM) 50 mg tablet 3 times a day as needed for pain, sulfaSALAzine (AZULFIDINE) 500 mg 3 tablets (1,500 mg total) 3 (three) times a day for inflammation. I also take Gabapentin (NEURONTIN) 300 mg 2 times during the day.
