Lupus.

This is a long article about a medical condition and I totally understand that it might be boring for some. Just letting you know beforehand!

Remember that arthritis in my back that was so bad that I left my dream art job over? (Well that and an extremely unsafe building. Those two things do not go together well at all.) I finally found out why it was REALLY happening.

This arthritis journey became very real and very debilitating a couple of years ago when my back got really bad after a surgery and medication change that I thought were completely unrelated. Turns out it put me in a horrible flare that lasted until about 3 weeks ago.

Lets start at the beginning.
I had horrible canker sores as a child. I still get them.
There was horrible hip pain when I was 13-14 that caused me a lot of trouble. I quit basketball that season bc of issues with the coach but my hip continued to hurt for a long time. That same hip still plays up.
When I was 18 I ended up in the ER with severe chest and lung pain. I literally thought I was dying. Every time I breathed (no matter how shallow) it felt like 10 knives were slicing into my lungs. I was patted on the hand and told I had pluerisy. I was sent home to take ibuprofen and put hot water bottles on my chest. I would have recurring attacks for the rest of my life.
Also when I was 18 my health declined a lot after that first pleurisy attack. I ended up with arthritis pain all over my body and the dreaded canker sores again. This was my first time being put on arthritis meds. I took Arthrotec for a long time. I stopped taking it after I got married bc of the risk of birth defects. I was fine for a long time. Unless it was time for my period then my body fell apart and I often ran 100 fevers and just stayed in bed wracked with pain, taking ibuprofen.
Babies came and I dealt with arthritis pain on and off in different parts of my body, plus horrible fatigue. I just thought it was normal. I knew the low-grade fevers that accompanied that pain weren’t normal but no doctor seemed to have a clue. I was patted in the hand and sent away, many times being told I had depression. Not being helped will MAKE you depressed!

I had what I consider to be a remission when my Lean PCOS was brought under control in 2011. It lasted until 2016 when my first, very serious arthritis flare started.
First, my right wrist swelled up and was extremely painful. Then after a month or so, it was fine. Then, horrors: over several consecutive days I lost control of my left hand as it was completely overcome with arthritis pain. It curled up and I could not straighten my fingers. If I touched it I winced in pain. If it moved in my sleep I woke up in horrible pain. I ended up sleeping with a heating pad tied around it just so I could get rest. Doctors didn’t know what to make of it so I had my first diagnosis of RA (rheumatoid arthritis). Throughout all if this I was so thankful that it wasn’t in my right hand. At least I could still paint. But I was also terrified it would spread there. I also developed Reynaud’s- a condition closely linked with Lupus. I had it so bad I got chilblains- places where the skin is damaged from lack of blood flow from the blood vessels not working properly in the feet and hands, making a painful sore. It was like having frostbite and was extremely painful. From now on I would have to keep my hands and feet very warm.
About 6 months later I was put on different hormones for my PCOS and the pain stopped within a few days. I couldn’t believe it. It was a miracle. I was dumbfounded. I had my first of many run-ins with a rheumatologists and other doctors who don’t really care about helping, but would still take my money.
Two years ago, after surgery for my PCOS and hormone medication changes, my back started to hurt. I had a constant headache (migraines). I didn’t connect the two at all but this was the start of a downward spiral. Within those two years I went from vibrant, happy, pain-free living to a being haunted by pain and suffering. I thought of suicide two separate times. Both times when the pain was untenable and hope seemed so far away, and after horrible experiences with doctors. I didn’t want to kill myself I just wanted to give up. Almost every moment contained pain. My lower back hurt all the time. I went to many, many, many doctors. I have the bills to prove it. I had the nerves burned in my back in painful procedures to help reduce the pain just so I could work. My family doctor was the best and called it early since I had a positive ANA lab test. He sent me to a rheumatologist who told me there was nothing wrong with me. The other doctors didn’t know and didn’t really seem that interested either. I was always blamed. It was my fault my back was the way it was. My fault. I believed that. My favorite diagnosis? Your’e getting older. Despite the fact that I am very fit and active I started hearing this at 36! I’m 43 now and that is still such a sorry excuse for a diagnosis!
“Come back in 6 months, that’ll be $150.” Lol the medical system is full of charlatans.
I saw a rhuemy practice 4 times over that same 2 year span, begging them to do something to help me. They never ran labs (the only labs I ever had for my illness were ones I requested my family dr. do in 2020!) fobbed off some mobic on me and kept telling me I did not have Lupus (I never said anything about Lupus until the last appt). By the last appt I was fed up. I demanded they do something and they said they wouldn’t give their own family members Lupus drugs (oh the absolute stupidity) and so bc of that I had Fibromyalgia (which they just give ibuprofen for which I was already taking by the boatload). I took one look at the fact sheet and said, I DO NOT have these symptoms! The appt was over then. I had to give up for a while after that day. Had to cocoon, heal myself, build up my strength to try again.

Here is where it turns. In May, I suddenly developed new arthritis pain. This time my pelvic bones felt like I had just had a baby. They hurt terribly. I used to be able to get through the day by being very very mobile, but also sitting and stretching my back. Now it hurt to do the important sitting part. Standing hurt and sitting hurt. I just writhed in pain. Then my old teacher foot pain- plantar-fasciitis acted up so I went to my foot doctor for a steroid shot. A few days later I felt great. I stripped and painted my son’s bedroom and felt fine. No pain! Now I’ve had a few days here and there with no pain but this kept going! Then we went on vacation. I did not connect a tiny steroid shot in the heel of my foot with back pain relief until the shot wore off, at Graceland. Yep, while we were visiting Elvis’ home the pain all came back. By the time I got through the museums and got to the car I was a crying mess. I was a solid 10 and rising on the pain scale. It was awful. My hubs is pretty smart and he put 2 and 2 together and had me call ahead to Nashville and book into an urgent care to get a real steroid shot. I was also contacting Dollywood, our next destination to see if we could rent a wheelchair because I could not walk. There were no wheelchairs available for the rest of the week. Fine, I would just stay at the hotel. Family vacation was ruined. My daughter’s senior trip was going to be ruined.

In two hours we were there for the shot and in a couple more hours the pain started to go away again! The rest of the trip was great! I was able to do everything! I could not believe how great I felt! But then I knew this wouldn’t last forever so on the way home I researched and found out how steroids help people with Lupus, but are also very dangerous with lots of very weird side effects including blood sugar issues which I experienced. Ugh.

By this time I had an appointment with a new rheumatologist and my good friend told me to keep going to rheumatologists until I found one that would help me. So I did. I saw my family doc first. I told him I was going to end up in a wheelchair. He told me it was Lupus since the steroids worked so well. He also encouraged me to go see as many rheumatologists as it took to get real help.
So I finally got to see another new one and he said Lupus and probably some spondylitis. He put me on plaquenil and I am feeling better and better every day. I don’t think I knew how sick I was bc I had just gotten used to it you know? I don’t even think I was being accurate in how much pain I was in bc I was so used to just dealing with it and being told it was my fault that I just screwed up my own back.
Now that I am actually healing bc my immune system isn’t attacking my cells and joints anymore I am starting to feel very different, very good and happy and normal again. I forgot what that felt like for longer than a day. I have hope. I have doctors who are treating me. I have medication that works and is very safe to take. (They even give it to pregnant mothers.) Praise God! I can work. (There was no way I could have gone back this school year before I got help and I was briefly considering just checking into a hospital until somebody DID something! I am so glad it didn’t come down to that…

If I can pass anything on to you it is this- debilitating pain is not your fault. Keep trying to get help, answers, and effective treatment. Change doctors as often as you need to. Your family doctor can be a real asset. Your pain management doctor can be an absolute godsend. Take as good of care of yourself as possible. Keep as active as possible, see a counselor if you need to. There can be very dark times dealing with your health and our current medical system. And know, that God is with you every step of the way.

With love and healing to you from Kansas Street,

-Jaime