Autoimmune Disease #4

 March is autoimmune disease awareness month.

Just in time, my body decided to do a cool new thing. 

In healthy folks, your red blood cells hang around your body for about 120 days. At the end of that time, your immune system paints the old cells with a little tag, and when your spleen sees that marker, destroys the cells. My immune system, heretofore called Dolores Umbridge, decided at some point in Jan?/Feb? to start painting every single red blood cell with that trash marker as fast as her greedy little hands could move.

The good news? Every other part of my body was doing it's absolute best to keep up with this ridiculous situation. Marrow has been making new cells as fast as possible. All other markers in my blood show good news. No evidence of cancer, etc.

Also amazing news? The medical system I have access to REALLY caught me. I had been part of a different group until late 2019, then I decided to switch to Northwestern Medicine. My feeling with the old group was that every conversation was a new thing, that no one was really treating me like a whole person. I had one appointment with a dermatologist that went so badly, I burst into tears. He was prepared to give me seven or eight seconds of time before completely dismissing me. It was demeaning.

Change to Northwestern Medicine. WOW. I love the internal medicine doctor I have (now called Dr. Coach), but in this particular situation, it was the whole team that SAVED MY LIFE.  I had been feeling crummy for a few months for a probably-unrelated medicine reason, not to mention it being winter and Covid and so on. But things were just slowly getting worse. Physically I was feeling so exhausted and achy and just plain awful. One day at work, a coworker decided to tell me that they thought I looked a little yellow. I thanked them, and over the next day or so, kept pondering that. Dr Coach is great, so great that seeing him can take a while. But then I decided that since I could schedule a video call That Morning with his associate, I went ahead and pulled the trigger. I had seen Dr. A before and and she had been exactly right both times, so within two hours of me deciding to do this, I had a genuine doctor suggesting to me that I take a break from work to go get a few blood tests drawn. Easy peasy, right by my house. And I could have found something right near work if I hadn't been okay with driving nine whole miles to go to the place I was already familiar with.

9:00 PM that night, Dr A called to let me know that I was going to be scheduled to see a specialist for the first thing the next morning. She was calm and reassuring, explained as much as she could and answered whatever questions I had, but also made it clear that this was a situation that needed all due haste. The next morning I got a call from another amazing human being who explained things well and took the time to make sure I was clear on what I needed to do. She even warned me that the building where my new Dr F works says "Cancer Center" on it but not to worry, Dr F is a oncologist as well as a hematologist. THANK YOU! for that warning! I can imagine getting plenty freaked to see that sign without fair notice.

Since then (less than three weeks?!?) I have had blood drawn right before each appointment and within TWELVE MINUTES! the doctor is looking at the real results, able to see how my body is really doing. Blow my mind, that. First, it is just so cool that they can do that. So easy to take for granted that I'm not sitting around places waiting for results - that would be anxiety inducing for certain.  On the other hand, it is also an indication of just how bad things are that they have me at the top of that list. GoOd HaNds!!

Two phrases used, both meaning the same thing:

PRIMARY AUTOMIMMUNE HEMOLYTIC ANEMIA
ACQUIRED AUTOIMMUNE HEMOLYTIC ANEMIA

I am currently on a very high dose of Prednisone to try and bash Dolores back into compliance. Numbers from last week show that it is working, although not super-well. Tomorrow we check again and see if this is good enough or decide to pull out a much bigger, more targeted gun. I am torn both ways, but feel strongly that Dr F will make the trustworthy call.  I have also been in touch with Dr Coach and he encouraged me to treat this like a sprint, to not get side-tracked and also gave me numbers for two "real" therapists to help.

I feel strangely good. All of my arthritis aches and pains have faded. I am eating quite well (ROTISSERIE CHICKEN at every meal for this life-long vegetarian?!?). I am working hard to keep my mind from getting all mixed up and catastrophizing. I have also been on a journey with the group Adult Children of Alcoholic and Dysfunction for the last four years (Dec 3, 2018 is my emotional sobriety birthday) and that has been an unbelievably important piece of how I have been able to process this mess as well as I am. I also turned off my alarm clock both physically and metaphorically when this started, and am able to just go with the flow for the most part. My employers have been wonderful and supportive and I am very grateful for that whole situation. I'm even a little grateful to Covid for letting so many people be aware of how germs can be so extra-dangerous for people with compromised immune systems - curbside pickup, contactless purchasing, just plain Not Staring at People In Masks?!?!? This is going to be a part of my life for a while because not matter how we get there, Dolores will not be back to full strength for a whole so now I have to treat myself like a fragile little flower.

Delicate flower. Me. HA! Well, true for now. And I'm taking that very seriously. I'll have lots of posts about that coming, I am sure. I love to share info I learn or test or prove for myself. And now it's time for me to put that dead chicken into a crock pot for the day and go get its fresh replacement. I may even put in a full day of work while I'm at it!!