Monday, March 30, 2015

Lupus Cerebritis - One Year In

One year ago this week I had a brain fart. No, I didn't just make a mistake, my brain actually felt as if it farted. I realize now that it was caused by the inflammation in my brain shoving the bones of my skull apart.

So much about my life makes sense now. It all started when I was a teenager and came down with a case of Mono.  Shortly thereafter I started having intense joint pain and seemed to be allergic to the sun. I was referred to a rheumatologist who tested me for juvenile arthritis. I was told I was just having growing pains, which at the time sounded wonderful considering I was only 5'1". Growing pains must mean I'm growing! Sadly I never grew another inch. I spent years with intermittent pain and would break out with sun poisoning if I stayed in the sun for any length of time.

At some point in my twenties I was referred to a neurologist for my pain and fatigue. Only to be told they thought I had fibromyalgia. Both my general practitioner and I agreed right away that wasn't the case.

When I was in my early thirties I was dealing with a lot of stress at work and the pain had gotten so severe over-the-counter pain relievers didn't help at all. I once again was referred to a rheumatologist. He tested me for Lupus and arthritis. The tests didn't show anything definitive so he was pretty much an asshole and basically accused me of wasting his time and being a drug seeker. He prescribed Celebrex. It worked like a charm but shortly after starting it the FDA pulled it off the market because of some potential side effects. I was back to just dealing with the pain.

It was all fine and dandy until one day while making the bed my arm fell off. I mean it completely detached at the joint and was dangling with only the skin and a few tendons holding it together. My labrum, the rubber band like tissue that holds your arm in place, had stretched out and was unable to heal itself. Scar tissue from years of inflammation was removed during the surgery and my labrum was resized to hold my arm on again. It took a full year to recover.

So fast forward a few years and I'm on the farm with my animals living the dream, spending a lot of time outside in the sun.  Only the joint pain is back, I am fatigued to the max, and I keep breaking out with a rash on various parts of my body. I'm popping ibuprofen like candy and trying every skin cream my general practitioner comes up with. Next thing you know I have an ulcer, not surprisingly since I'd taken the maximum daily dose for about twenty years. Then one day at work I'm cleaning out the chicken coop and that shoulder of mine starts to burn like it's on fire. A few weeks, or it might have been months, later while I was bent over the sink brushing my teeth my arm fell off again.

It freaks a person out when you look in a mirror and see your limb just dangling like that, so off to see the orthopedic surgeon I went. Only this time the MRI showed significant arthritis damage in the joint. So much that the surgeon refused to operate and referred me to yet another rheumatologist. I ran down the list of symptoms, she performed the tests, and I fully expected to hear the same thing I've always been told. Instead she said that five percent of people with Lupus never have a positive ANA test. She wasn't sure it was Lupus but she started me on Prednisone to determine if it was an auto immune issue or not. I started eating everything in sight but sure enough the pain and rash went away so we knew it was an autoimmune disease. Eventually I was diagnosed with both Rheumatoid Arthritis and Lupus. My body was attacking itself. The thing is with an autoimmune disease any little illness or injury can set off an immune system response. Your arm falling off definitely sets off a response. I was in a full-blown flare.

Finally knowing what I was up against I spent six months trying different combinations of low-dose steroids, antimalarials and chemotherapy and then the brain fart happened. I can remember that I was driving home from the grocery store. At first it was just a headache, it burned like a sinus headache. Then it started to feel like the top left quarter of my brain had been sliced out and replaced with a brain that weighed twice as much. All the connective tissue in my head was inflamed, you could actually see the inflammation in my eyes. I was prescribed an antibiotic and the burning went away for a while but the pain was still there. We jacked up my Prednisone dose to forty milligrams. I think I gained twenty pounds in a week.

It was time for me to go on an Alaskan cruise, something we had planned for over a year. After getting off the plane in Seattle I starting having issues with vertigo. I wasn't sure if it was the disease or if I just needed to find my sea legs. Either way I didn't let it interfere with my eating. I gained another ten pounds on the boat. Once I returned home it was obvious it wasn't motion sickness. I had vertigo every day for four months. I couldn't think straight and I had involuntary muscle movements. It was difficult to get up and down the stairs or even walk across the room at times. I saw specialist after specialist who ran test after test. At one point they thought it might be MS. I had more tests. It was decided it wasn't MS it was Lupus Cerebritis or CNS Lupus.

What is Lupus Cerebritis? It is a symptom of lupus in which brain tissue becomes inflamed. The inflammation causes swelling of the brain which starts mucking up the central nervous system. Scary stuff and there is no cure, only treatments to lesson the symptoms. The low-dose treatments I had been on were no longer an option. If I didn't do something I was bound to have a stroke or develop dementia. Massive amounts of steroids and other serious drugs were necessary to combat this.  It was time for a full out war on this disease. 

During all of this I happened to tell my Rheumatologist about how my friend with a completely different autoimmune disease started taking the antibiotic, Bactrim, and all of a sudden his autoimmune symptoms were under control. She said at one time it had been used as a treatment for rheumatoid arthritis so if I wanted to try it she didn't think it would hurt. It was a Hail Mary pass. You know what? It worked! Shortly after starting it the burning and the vertigo went away. We don't know why it helped but it did so I've continued to take it at a lower maintenance dose. It was not a cure all. I still had issues with overwhelming joint pain, fatigue and headaches so I started taking Orencia infusions. It immediately helped with the brain fog and I started noticing the joint pain lessen and finally the headaches started to disappear for the most part. We are still trying to find the right medication to prevent further RA damage to my joints, so far the ones I've tried have caused me severe nausea and dizziness, helping me lose those extra pounds. I now believe we are on the right path. I recently discovered flying is still an issue that causes headaches and motion sickness so I will address that at my next doctor visit. 

I have learned to accept that I will never feel 100% again. I understand that the fatigue will always be part of my life now. I get it that my shoulder will never be fixed because of the lupus complications. That doesn't mean I like it. I went from being a highly active person with an obsession with to-do lists to being completely exhausted after just taking a shower. It has changed every aspect of my life. To make things easier we have moved to a one story ranch home with a walkout basement. The stairs we do have are deep enough that I usually feel safe using them. The days I don't I just don't go downstairs. I am not able to work as much as I would like but I am hopeful that continuing my yoga and treatments I will eventually regain some of my strength. 

I spoke to a friend recently who said, "I just hate it that you had to give up so many of your dreams." I hated it too at first. But lately I've started to realize that this has forced me to slow down and appreciate things differently. I've already lived a varied and interesting life. Slowing down now to smell the roses isn't all bad. 

So I guess the moral of this story is if you know of a teenager having joint pain, it's not growing pains. In fact there is no such thing. Normal growth does not cause pain. Keep going to different doctors until you find one that helps. Don't wait in pain for twenty-five years until you are properly diagnosed. And if you are facing a diagnosis of Lupus Cerebritis don't be afraid to throw that Hail Mary pass. You might be pleasantly surprised.