Making Sense of the Chaos: An Autoimmune Update Post

 It's time for an autoimmune update post!  I saw my primary care doctor, Cassandra, yesterday afternoon.  I had to update her on so many different things that I nearly forgot half of it.  Thankfully, Michael was at the appointment with me, so he was able to make sure the things that I forgot about would be mentioned.  This is why it is critically important for support people to be allowed into these appointments.  Most of us with autoimmune disease also have some form of brain fog at the same time.  It's difficult to live with it and even more difficult to manage your chronic illnesses when you're dealing with brain fog, too.

Before Cassandra left for a two-week vacation, she messaged me and told me to behave while she was away.  It was a perfectly normal comment for us as we tend to joke about my health and body always causing issues.  She always jokes with love in her heart, never to be mean, rude or disrespectful.  She knows when it's time to be serious and when joking would be acceptable.  This is one of the many reasons that I love my doctor.  When Cassandra got into the office, I told her that my body took her message as a personal challenge.  We both had a laugh about it, then got to business.

I informed Cassandra of the update in my Scleroderma diagnosis, which is now Systemic Sclerosis Sine Scleroderma (ssSSc).  She couldn't find that particular form of Scleroderma in the system, so she just updated it to Systemic Sclerosis, which is sufficient enough for me.  I think she made a note of the full diagnosis in the system, but now the only thing that matters is that the semi-correct form is there.  She previously had it listed as CREST, but that name is no longer used.  ssSSc does go under the umbrella of Systemic Sclerosis, so I think it is close enough.  After all, this is a rarer form of an already rare disease.  Only 5 - 10% of Scleroderma patients have Sine Scleroderma, so I'm having trouble connecting with other people who have this form of the disease.  

I also told Cassandra about the testing that Dr. Sheena Henry, my rheumatologist, wanted done soon.  Cassandra gladly ordered the testing.  One thing you should know about my doctor, she never gatekeeps testing.  I could ask for any test in the world, and as long as the insurance approves it, she will run it.  She didn't even wait for confirmation from Dr. Henry.  She just asked what organ and put the orders in.  There was a High-Resolution CT of the chest (HRCT), which is necessary to monitor my lungs.  I have never had one of those done before, so this will give us a baseline.  I also needed the PFT to be re-ordered as the receiving clinic closed my referral when I didn't call them back soon enough.  That was frustrating due to my severe anxiety about scheduling any tests.  Luckily, Cassandra re-ordered the test with no issue.  There was also a new blood test we must do every 3 months... a BNP.  I have never had one of those, either, so I was nervous when I was waiting for the test results to come back.  

Cassandra and I discussed the three different medication reactions that I had last month.  She made notes in the system so that nobody would prescribe those drugs to me again.  I asked her if the infection I had would have been affected by the two rounds of steroids that I had to take.  She said she didn't think so, but we ran a test to check and see if the infection has gone away.  Those results won't be in until later this week or early next week, so I'll be waiting and wondering for the next few days.  I explained to Cassandra what Dr. Henry said about my immune system being "wonky" and causing the immune reactions to various drugs.  Yes, "wonky" is actually the word that the doctor used.  She said it would not be worth a trip to an allergist's office as it's not technically an allergic reaction, but rather an immune reaction to the medication.  It's all so confusing to someone like me with no medical training.  

This appointment was originally set before all of these reactions.  It was supposed to be my normal pain management appointment that we do every three months.  The law requires an in-person visit every three months for pain management, so that is how we do it.  It gives me an amazing to go over any other issues that I might be having at the time.  That is exactly how this appointment went.  We had so many different issues to discuss that I took more than my scheduled appointment time.  Luckily, they weren't too busy and were able to work me in early (I had shown up almost an hour early).  We did discuss my pain management and prescriptions were sent to my pharmacy for them.  They will be filled next week, when they are due.  It's still a bit early to order them today.  

After taking care of the business at hand, I gave Cassandra an update on my mental health.  I had the opportunity to tell her all about the 4th of July fireworks having no effect on me.  She was over the moon with excitement for me.  I told her that EMDR is like magic and that I highly recommend it to anyone who is ready to heal their trauma.  The nurse that took my vitals when I got there had made a comment that my medical trauma would never go away, and I had to correct her.  I said, "Actually, EMDR does cure it now.  I've done it and cured one of my most traumatic memories."  I wasn't rude when I said it.  I was just educating her about new therapies that are available and are working on me.  I feel obligated to share what works, in case it could help someone else.  I told Cassandra about the clonazepam that I was saving for the 4th of July.  She laughed when I told her that it was still sitting in the bottle!  I was so proud to share this news with her, and I think she was equally proud to be trusted with it.  Cassandra is one of the only providers who makes me feel like she really cares.  It's rare to find that in the medical field these days, but I have found that with Cassandra.

With all the other orders of business taken care of, there was just one more to deal with: bloodwork.  I hate getting bloodwork done because most of the phlebotomists there don't know how to deal with Scleroderma veins.  The problem with doing my bloodwork is that I have scar tissue from so many IVs over the years.  Scleroderma causes excess collagen production, which becomes scar tissue.  Most phlebotomists don't know what to do with a vascular disease like I have, so they end up hurting me by trying over and over again.  As Rockwood, there are two medical assistants who always get my bloodwork done, and usually with only one poke.  Unfortunately, that was not the case yesterday.  Tammy did my bloodwork, and she is one of my favorites there, but she couldn't get my blood to move on the first poke.  She started to dig around and I nearly cried from the pain.  She said she didn't want to dig around and I said that I'd appreciate if she didn't dig around.  We decided it would be best to pull out and try again, which is exactly what she did.  She got the bloodwork done on the second try and I was grateful for that.  She apologized a million times and felt really bad, but it was really no big deal compared to what I get with other phlebotomists.  Most of them take several times to get it right.  I'm not mad about the way it went at all, and I think that's what really matters.  It's all about attitude with me.  She didn't act entitled to hurt me.  Instead, she was genuinely remorseful, although it wasn't necessary.  

All of my labs are back already.  They are beautiful, if I do say so, myself.  Everything was normal except for the slightest low A:G ratio and my cholesterol was extremely high.  I'm not sure what the doctors are going to want to do about that, but I have heard that statins are not safe to take with PBC, so I'm a bit concerned about what I should do to rectify this situation.  Cassandra is out of the office today, so I will probably hear from her about it tomorrow when she returns.  I'm nervously awaiting that phone call.  

Until later...