I have advocated for JM all his life. I have fought tooth and nail for that kid. I have researched, asked questions and dug for answered. It is time I start doing this for myself. This past fall, 2020 I hit the wall. I guess it was just part of 2020 wasn't it😆 My OA took a huge turn for the worst. I began to have more than just arthritis pain symptom. But crippling, exhausting, fatigue systems that at the time I did not know was part of OA.
In December I had what I found out was a OA flair up. It lasted over almost 2 months before it settled down. I needed to do something. It was time to get serious. Time to figure out what is going on.
About October November 2020 I started researching. Talking to my primary. My primary and I have actually been having on going conversations. So I had been doing digging before this. But this is when things got real. I spent every free minute researching. My primary, John and agreed I should see a rheumatologist. To see if by chance I might have Rheumatoid arthritis (RA). It is common that kiddos who have had Juvenile arthritis develop rheumatoid arthritis. My Rheumatologist was really good. She was thorough. She looked at old x-rays, currant ones, took new ones, new blood work for RA and other inflammatory disease.
The results- I do not have RA! 1. I do have sever Osteoarthritis. There are 4 levels of OA. I have the level 4 2. The new x-rays and findings showed new damage. One big area is my SI joint. This damage dose explain a lot. John and I researched this. This can cause a lot of problems in your feet like drop feet, burning or stabbing feeling in your toes. Feelings similar to neuropathy. This past year I have been dealing with these feelings and problems in my toes. They at times are pretty overwhelming. Of course it was a mystery on why when I saw my foot Dr. "Another it is Brenda's feet" . It feels like neuropathy but it is not neuropathy. I do have some neuropathy in my feet also. That is a give. But this is different. There are a lot of other things the SI joint deterioration causes. This is just a couple. 3. There is no cure. I will not get better and I will only get worse. My joints, ligaments, tendons will continue to deteriorate. To put it bluntly. There is no slowing this down. This is hard. Hard news. To know I am not 50 yet. Ok I am close 😇 And this is my out look. I will have many more surgeries in my future. I am actually already putting off 2 different operations that need to happen. 1 was scheduled for one this winter but my husband had to be taken care of first. I can wait as I will always have something.
What's next- 1. I am starting maintenance chiporatic care. Right now my chiropractor is working to get my joints opened up and in line. I have a few ribs locked up and that are back to slipping out of joint. I felt them go about 3 weeks ago. I thought I got those suckers back in. Loosen my SI joint. It is locked up. Then we can start maintenance treatments monthly. After he did test my joints he said my hips are good. I will not need a hip replacement anytime soon! Sweet, I will take that! 2. I will be going to a pain clinic to talk with them about possibly regular pain management. As yes, I am to this point with pain now. With OA the tradition pain care is steroids' and cortisone injections. This you do to treat the joints that are detreating. I am seeing about a daily low dose medication and then those others for the big things. 3. I am being referred to a genetic councilor by the rheumatologist. This is to look at some other things that maybe happening. One thing the rheumatologist is thinking is I may have a connective tissue disorder. Where my tissues and bones are not staying connected. 4. This MN winter is not good. John and I will be looking to spend more time south in the winters. This will be as we can afford it and as JM is stable and he has a good team of staff that is working with him. Talking with professionals on my team thinking dry warm may be best. Even though I do love the water.
So this brings you up to speed on the big picture. Now I can move forward with the as it happens things and keep you connected with what is going on.
Please feel free to leave words of encouragement. Things you have found helpful. Please keep the negative and "constructive criticism" to your friends.
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