Auto Immune Diseases

So I just want to write this column about a subject I wish I didn’t know about but sadly I do, auto immune disease. I had no clue about this subject but life always seems to throw a curveball when you least expect it. I have felt like shit for months and I had no idea why. Going to the grocery store should not exhaust me. Taking the trash out shouldn’t exhaust me. Normal life should not be overwhelming. The pain has been out of control, body aches, fire and pain in every joint, knees, ankles, shoulders, hip, fingers and toes. It literally feels as though someone has beat every inch of my body with a bat. The meds are no longer helping. Something major is wrong, I know my own body and this is not normal.

I was diagnosed with hypothyroidism and arthritis last year so I thought everything was connected to that. I take thyroid pills, antiinflamatories and Vitamin D for that. Ths doc said to give it a couple of weeks but I never felt better, I just got worse. I started a new job in January so I went a couple of months where I could not take time off to go to the doctor. Then covid happened and everyone knows how that disaster has gone so I was not able to see my doctor.

For the past 4 or 5 months everything swells, my feet, my ankles, fingers, toes. I wake up and I am incredibly stiff every morning. It takes me about 30 minutes to get moving and to be able to actually do something. Mondays are the best because I sleep a lot over the weekend and I feel better. I go to work and on Mondays, usually by 3PM the pain starts creeping into my joints and it hurts to move. Over the course of a week it starts hitting me earlier and earlier during the day so that by Friday I am in pain all day. I can’t get on the floor because I cant get back up. Stairs are a killer and chores like vacuuming and loading the dishwasher are crazy painful. I work downtown and I have to do a lot of walking and sometimes I have to rest.

So I go back to the doctor absolutely desperate. I asked her to check my thyroid again and talk to her about how bad the arthritis seemed to be getting. I also casually mention that my scalp had been itching. She looks at my scalp and tells me that I have psoriasis all over my scalp. I told her I have never had psoriasis and was she sure? She told me I have silver scaling all over my head. So when you have psoriasis your immune system is attacking your own cells instead of viruses which causes those cells to produce way to many skin cells and those come to the surface of your skin causing lesions, itching, and silver scales. She thinks I have psoriatic arthritis which is a different than regular arthritis. With this disease it starts attacking your joints and the tissue in your joints slowly eating away at it. She changes my antiinflamatories to stronger ones and refers me to a dermatologist. Oh and I also have a toe infection and I have to go to a podiatrist for that. Since my body is so busy fighting itself it allowed an infection to come in my big toe which has started hurting badly and swelling.

I get in with the podiatrist first and she tells me she’s going to have to remove my toenail. I am very unhappy about this but she says let’s do it now. So I did and it hurt and hopefully that’s it. Then I go to my dermatologist who took 3 weeks to get into. Of course he is at Harris so I have to park in the parking garage and hike to his building. He’s moved offices so, sigh, I am at their old building and apparently they have not changed it in Google and now I have to hike back to my car and find his office. So I do and, sigh, they have no record of my appointment. At this point I am close to tears and the receptionist looks at me and says they’ll fit me in. So an hour later I get in a room. The nurse is great and the doctor comes in quickly.

I really liked the doctor. He apologized several times and was very easy to talk to and attentive. He pretty much looks me over and he tells me I have psoriasis on my scalp, my ears, my left heel and my right shin. I am totally shocked but I am not totally ignorant, I did a lot of research. We talked about my pain levels and where it hurt the most. Turns out I have every symptom you can get. He says he can put me on a pill and it will take 6 months to work or I can go on an injection that I would do myself at home and have relief in a month or less. For the first couple of weeks you do 2 shots a week and then you just have to do a maintenance shot once a month.

I tell him there is no way I am waiting 6 months, I will do the injections. So I had to go get 7 vials of blood drawn, 7! They are checking everything, thyroid, vitamins, minerals, arthritis, liver and kidneys. Now I am just praying that the insurance company will pay for it. The injections are a couple thousand dollars a month. I am pretty sure they are not going to want to pay for it. I am scared that the injections will not help and then what will I do?

The new drug helps a little but I am still in constant pain. It has been a week and the blood tests still are not back (Covid probably). So I am waiting and trying not to stress out. We have new kitties but I can barely get on the floor to play with them. They are a great distraction though and very cute. What if the tests come back and they say sorry, can’t take that drug, what next? What ifs never helped anyone feel better so I keep telling myself patience, Ashley patience. What is that saying? This too shall pass. I need it to pass now though.

So when someone who looks perfectly healthy seems to not feel well please keep in mind that auto immune diseases are usually not visible. You never know what someone is going through in private. No one would look at me and think I am in great pain everyday but just because I have no visible wounds doesn’t mean it’s not happening. I think with everything going on right now we all just need to be more understanding of others. Let’s hold eachother up, not down.