Systemic Sclerosis Sine Scleroderma: An Autoimmune Update Post

 It's time for an update post.  I saw my new rheumatologist today.  My friend from group took me and I was incredibly grateful for her help.  We met in Spokane, then she drove Michael and me to Coe'ur d'Alene, Idaho, to go to my doctor's appointment.  It was a nice drive with beautiful scenery.  Before today, I had never gone to Idaho.  There is currently a wildfire on the mountain out there, so we got to see a bit of that.  Scary stuff, really.  Firefighters were ambushed on that mountain yesterday.  It's made national news.  

We found the medical office with no trouble at all, not that I'm surprised.  My friend knows the area better than I do, plus we had the use of technology to guide our way.  I would be so lost with my digital maps on the phone.  I get lost coming out of the bathroom.  Maps are necessary everywhere I go.  We got to the appointment quite a bit early, but I would rather be an hour early, than a minute late.  We didn't know where we were going or how long it would take to get there, so I was glad that we got there early.  You never know what is going to happen when you go to a new place.

The staff took a while to get us back there, likely because I was a new patient and there was a lot of paperwork to input into the system.  I kind of know how that works, but not really.  I've been to enough doctors to know that it's a process and can be time-consuming.  I tend to be fairly patient, as long as the staff treats me respectfully, and the staff at Kootenai Rheumatology was very respectful of me and my various issues.  I have medical trauma from being mistreated, abused and even assaulted by doctors before, so I am anxious every time I go to an appointment with a new provider.  In fact, when they checked my blood pressure, it was 169/111, which is exceedingly high, especially for me.  My blood pressure is usually around 90/60 or 100/70, but it is never as high as it was today.  I had to explain my past medical abuses and that did not feel all that great.  I got through it, but it sucked.  I had to tell the story twice because the first time was with the medical assistant, but then it became necessary to explain it to the doctor as well.  I hate talking about the things that have happened to me, so this was terribly difficult for me.

Dr. Henry went over my past medical history and tests, specifically the ECHO, chest CT, PFT, and blood work.  I have a problem doing some of these tests because of my medical anxiety and claustrophobia, but the doctor explained the importance of these tests.  Ultimately, I agreed to get them done.  I don't like that she wants some of them done every 6 months.  It's been 4 years since I had the ECHO and PFT done, but I have never had a chest CT, at least not as long as I've had Scleroderma.  Part of the blame there is my medical anxiety, but the other part is the fact that Arthritis Northwest couldn't get it together well enough to even order the tests.  They even forgot to sign the order once!  I finally gave up and had Cassandra order the tests for me.  I still need to get them done.  My anxiety has stopped me from making the phone call to schedule the tests.  Somehow, I must get this done.  

My diagnosis has an update.  I was previously diagnosed with Limited Cutaneous Systemic Sclerosis (LCSS) or Limited Scleroderma.  Apparently, that is not the whole picture.  The more accurate diagnosis would be Systemic Sclerosis Sine Scleroderma (ssSSc).  From what the doctor explained, that means that the disease is affecting my internal organs and not my skin.  With Sine Scleroderma, my medical team would need to closely monitor my lungs and kidneys as there are dangers involved in those organs.  Cue my anxiety!  Scleroderma Renal Crisis is a concern, as is Pulmonary Arterial Hypertension (PAH).  This is the reason for the ECHO, which is already scheduled for two weeks from today.  The doctor was pleased that it was already ordered and scheduled.  

I was nervous that the doctor was going to make me fight for my Arava prescription, but that was not the case at all.  She asked if it helps me and I explained how it has had an amazing effect on my joint pain and that I would really like to stay on it.  I further explained that Dr. Cassandra has been prescribing it while I waited for this appointment, but she is not comfortable prescribing it long-term.  Dr. Henry completely understood that and did not hesitate to send the prescription to my pharmacy.  I was so grateful that I didn't have to argue with her or prove the need for it.  Of course, it's not a narcotic or a controlled substance of any sort.  It's just an immune suppressant.  It just slows down the progression of the Scleroderma and helps some of my aches and pains.  I still require my pain medication, but that is for other conditions, as well.  My pain management does not come from my rheumatologist, anyway.

Dr. Henry was impressed with the way that Dr. Cassandra is taking care of me.  She was glad to know that Cassandra orders my testing for me and my medications.  I explained to her that Cassandra is good at keeping all of my doctors informed of various results.  I never even have to remind her to do it, either.  She just automatically sends the labs over to them.  She's so awesome.  Cassandra keeps my entire medical team informed of any and all changes.  She's like the manager for my medical team and she does a great job of it.  My case is complex and complicated.  I have both medical and mental health diagnoses that all complicate each other.  Any doctor treating me needs to be ready for that.  Without someone like Cassandra on my team, I don't think I'd be doing as well as I am.  

Dr. Henry and I discussed future appointments.  I explained to her that I live in Washington and have no vehicle to drive myself out-of-state for these appointments.  She told us that she has her license in Washington also, so she can do a virtual visit in-between the required yearly office visit.  I was so relieved to know that I can do online.  She did explain that legally I must come into the office at least once a year, but I think I can manage that.  I love doing virtual visits as opposed to taking such a long trip out of town.  Traveling causes me quite a bit of pain, so I try to minimize the trips, if I can.  She said that twice a year should be fine, but if we ever need to increase it, that would be fine to be virtual visits as long as I come in once a year.  Medical laws are so strange.  We scheduled my virtual visit for January.  We decided that would be better for winter so that I won't have to trigger my Raynaud's by traveling so far in the cold and possibly snowy weather.  

We discussed my quarterly labs, and I told her what Cassandra orders for me, which is CBC, CMP, SED rate, CRP, and a Creatinine/Protein urine test.  Dr. Henry said that we just need to add BNP to that list, and she would be quite pleased.  She has access to the MyChart account for my Multicare chart.  That's going to be so much easier than Arthritis Northwest's system.  They couldn't see most of my labs and other tests.  It was frustrating for me, but Cassandra always kept them in the loop, so it wasn't an issue very often.  It felt good to hear that Cassandra is doing a good job keeping track of everything for me.  I always knew she was great, but to hear it from other providers validates my decision to stay with her, even though she moved towns.  I'll have to send Cassandra an email to let her know to add the BNP and the chest CT to my list of needed tests.  

That covers just about everything that happened at my appointment, but after I left the office, I got into my head and not in a good way.  I was hyper-focusing on the change in diagnosis and what it meant for me as far as medical anxiety and extra testing.  I'm not happy about it, but I know that I must do what I must do to stay alive.  I'm not ready to die from these diseases, so I'll go and get the damn tests done!  I might cuss and whine the whole time, but I will eventually get them done.  

Until later...