Bad Week, Hard Lessons

This week I am still recovering from a pretty bad flare, one I feel was my own fault, but really Rheumatoid Autoimmune Disease (Rheumatoid Arthritis) is at fault. I did not do it on purpose, just a temporary forgetfulness of what I can handle, it happens too often. My boyfriend’s son came over to help setup my bed and move around boxes. He also helped out with putting the top of my new desk on and tightening the screws.

The desk was my first error, but I really did not know it would be at the time. Lloyd pulled the box over to the area where I needed to setup my desk. I was excited to get to put something together; strange but I like it. It all went well and I had no pain until I started to have to look up and raise my hands just above my head to screw in a few of the screws.  My shoulders started felling a little sore but not bad enough to stop.  After the desk was ready, Lloyd headed out the door with his son. I headed into the bedroom to look for things I needed to get my desk organized a little. The boxes were stacked up on top of the dresser and I grabbed a couple down to look in them, yes my second mistake. They were pretty heavy but I felt no pain, at the time.

Then next day Lloyd headed to Las Vegas for a conference. I am not sure when but at some point I noticed I was starting to have to urinate every 10 minutes, this seems to happen before severe amounts of pain and has became a sign. I decided to get the meats I purchased grilled so I just grilled everything up for the week. I was afraid if I did not grill it all, I would not feel well enough to do it later, which I was right. My shoulders started getting tender and my neck and back started getting stiffer.

The pain levels increased and the ability to get sleep started becoming an issue. The weight of my head was more then my inner shoulders/neck could take, I felt the most relief when holding my chin or whole head in my hands. I tried lying in bed but as soon as I laid down I felt pressure in my head. The pressure increased as I was laying there. I could only think of the Serenity Prayer and the pressure started getting so bad that I started forgetting the words. I got out of bed and immediately was freezing, so I ran to turn on the furnace. The pilot light was out, so I sat against the wall trying to get it to light.  Lloyd had walked me through it, but every time I tried to start the furnace the pilot light would go out again. I laid back up against the wall and was falling to sleep. I am not sure how long I was in the hallway against the wall but I do know it was the best sleep I got all night. The third try at the pilot light and the furnace started, so I went to bed.

The next day I sent a text to a friend to ask her to get me some Benadryl, I knew I needed something to help me sleep. I knew I was too exhausted to make it to a store and back, even though it is just around the block. I was too weak to walk and too exhausted to drive. I am sure she was shocked that I sent her a text; she even sent one back asking if I knew I sent it to her.

By this point I was rotating from lying down on the couch, sitting up on the couch in a way I could lay my head and there would be less pain, to walking around and sometimes sitting at the desk. I was in too much pain to watch television, once in awhile I could listen to music. Usually Norah Jones because it is more mellow and sometimes the pain was too high to listen to music. Other times I just needed peace and all I could do is rest. I was also feeling hot and cold, my body felt on fire from the fever. I still wore a sweater, a heavier one when I was cold and a lighter one when I was hot. When walking around I needed the pockets to put my hands in so my shoulders did not have to hold the weight of my arms hanging beside me. Sometimes the sweater was too heavy and I had to lower it to my elbows so I could still use the pockets but not have the weight on my shoulders.

Lloyd asked a friend to come over to crack my back during the week, it helped so much. It did not relieve all the pain but took it down a level or two. I continued to rotate from the couch, chair and bed; walking throughout the week as well as getting my back cracked. By the time Lloyd made it home I was out of the hardest pain. This week the pain levels are mild and I am getting a few hours a day again with almost no pain at all.

When I would sit down at the desk I would read more at RA Warrior and cry when I saw how so much of what I have been going through this past year. I saw she is going through similar issues and others as well. Sometimes I would go to Rheumatoid Patient Foundation and just cry because it gives me so much hope.

This year while my shoulders have been stiff and sore, my throat has also hurt a few times. I noticed that if I put pressure there and slightly rub it would crackle and the pain would subside. I have also had breathing issues many times. I thought it was from allergies and it may partly be. But it has been worse than ever in my life. It feels heavy on one side of my throat/lung area when I am having trouble breathing. And I have problems swallowing; I am not sure how many times this past year I have choked when taking a drink of water or soda. I have lymph nodes that swell up in my neck and go down. Optical migraines that my eye doctor said were from inflammation. RA for me has been more than just pain and stiffness in the joints and sore muscles. Even my jaws stiffening at times when I am eating, the doctor says see the dentist, the dentist says it is the RA. I also believe it is the RA as my sister has the same issue at times. During this flare the back of my leg felt bruised where there are varicose veins. This is something new.

I learned a few hard lessons during this bad week. Even though I feel fine and strong enough to pick something up, I will not. Even if I pick it up and do not feel any pain at that moment, it can hit me a day or two later. When a joint starts to feel sore from doing something, stop. Although that one is hard, I have to ask myself  is it worth the pain? Sometimes it is, it is a choice only I can make. Another lesson is to ask for help when I need it. This is hard, I do not want anyone else to have to see the amount of pain I am going through. I learned how much I love that my boyfriend can crack my back and lucky that he doesn’t mind giving me a good hug.

Thank you to the friends that were able to help and Lloyd for always being there to help.

 

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Faces of Juicing Book
Biotinidase Deficiency Not RA
Diagnosed with Rheumatoid Arthritis in Dec 2003 because of joint pain and fatigue. Found out on July 19, 2013 that I really was profoundly low on Vitamin B7 because of a rare disease called Biotinidase Deficiency. When I found out I was very weak, hardly could get out of bed, could not turn my head without getting light headed, dragging my feet when I tried to walk, struggled to breath daily for years and was having many many other issues. From the first 24 hours of taking Biotin my symptoms started to disappear and my body started getting stronger again.
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