Tag: Vasculitis

Add another Autoimmune illness-Vasculitis

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I pay for this site so that I can keep the kimmstree.com address, but I haven’t written on here in three years. Part of the reason is because life got really hectic; now it is less so. Part of it is that I couldn’t decide what kind of blog this would be, but I think it has pretty much been a health blog [impending menopause, thyroid, RA]. I toyed with the idea of using it as a platform for my side gig selling books for Usborne, but then, I am so disenchanted with the MLM model, that I just can’t.

So, here’s a quick update: My RA morphed into Vasculitis. I’m convinced it was due to stress from my job [some Shakespearean parents whose constant litigation caused many so much extra work and hassle]. What that looked like was petechiae on my lower legs and hemorrhages on my retina. Because my sister had been hospitalized with LV and had to go on months of Cytotoxan, my doc put me on the infusions Robin was taking: Rituxan- and things got better. I take the infusions every 5 months- previously it was six months, but I was having breakthrough pain and symptoms, so she shortened it. This drug replaced Humira with a side of MTX. I stopped taking the Methotrexate due to a host of side effects, as well as the Plaquenil and replaced all with Rituxan. Now the infusions are a Godsend for the RA, but the vasculitis tries so hard to slip back in. I am a week from my first of two infusions this month and I am having symptoms which I attribute to the Vasculitis: sore ears [a weird aural fullness that is a painful ache], fevers, aching around my neck, scalp pain, itching.

I had planned to retire at age 60, which is a little over 2 years away, but I cashed in my chips this year, a victim of Covid19. I didn’t get Covid, but my sister did and she was on a ventilator for over 100 days. That will be a whole other entry entirely. I went to work from home March 2020 doing what teachers do- making it work. Spring of 2020 was hard, but the 20/21 school year was even more difficult still. Many people have no respect for what this was like. They saw teachers sitting on a sofa at home and, we were, but we were there for 16 hours a day. We only got up to take care of pressing personal needs. I taught EC, so I had to create content for my students that was engaging enough to keep their attention. It would take me hours to create content that could be delivered in less than 30 minutes. I learned to use CANVAS, delivered group and individual instruction, managed staff, made packets, trained parents on how to use all of the new platforms, delivered items to student homes, and continued to keep up with data, IEPs, and everything else the district threw at me. I just could not do it again this year. I wanted to hang in there for full retirement, but I looked at it through a risk to benefit ratio and then cashed out. I have absolutely no regrets.

I feel like it will be the Vasculitis that gets me in the end, not the RA, and I do not want to waste any time. I am taking a writing course, writing, working out, soul searching, and just generally grateful for every single moment. The problem with working as hard as we were all working last year is that you don’t even have time to be grateful, it’s like swimming from Cuba to Miami with sharks chasing you. I love each morning and I go to bed happy every night. I am still working for the group home writing plans and have taken on a part time supervision role, but for right now that is enough. I am also having fun volunteering at the Carolina Theatre downtown.

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Update July 9, 2018

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This title sounds like a star date and that is about right.  It feels like light years since I wrote anything for this blog and it appears it has actually been two years since I made an entry.  Two incredibly busy years kept me from blogging… let’s see, I have been teaching 3-5 AU [which requires the energy of 3 or 4 people] and continuing to work part-time at the group home, dreaming of retirement and/or a time when I can read books again and maybe write books finally, living this crazy romantic life with Bean where I bridge two cities and live out of little bags that I schlep back and forth in my car, and dealing with a crazy woman who is the biological parent of Audrey and Rusty and this is an entire story unto itself, so yes, I’ve been a bit busy.

The crazy selfish bio parent has a weird and abusive older boyfriend who attacked Rusty multiple times, we didn’t know until the last when he made the North to Alaska call to his Dad in the moment.  Skip forward to weird Trumper-boyfriend signing a DVPO voluntarily to avoid having said children testify in court, Mom saying I’ll miss you guys and moving a city away to a smaller apartment and now only seeing one of the kids for a couple hours each week.  This all happened almost a year ago and the fallout has required me to step up and our relationship to change since the kids went from being around 14 of every 28 days to 28 of every 28 days and 24 hours of every day.  We are not complaining as they are better off in so many ways, but the disappointment that we all feel for this horrible woman and her terrible choices weighs like a heavy rock we all have our hands up in the air to collectively carry.  We are trying to find a big cliff to pitch it off and purge ourselves of the dark cloud of letdown and disbelief.

RA turned out was the moderate to severe and aggressive sort that only responded to a multimodal full on assault of Methotrexate, weekly instead of bi-weekly Humira injections, Plaquenil, and sometimes steroid bumps/tapers.  I have erosions in my hands and feet after only 4 years and my feet look different with weird nodules and bunions and daylight sign on middle toes.  I don’t think about RA as much, though, and it is now just part of the landscape of my life, in fact, I would have said I was in a good chemical remission, until late spring/early summer when the Vasculitis hit.  I developed petechiae on my feet, and since my sister just spent the better part of a year slaying this particular dragon, I knew what this might be.  A routine visit to my eye doc where they found hemorrhages on my retina and I knew for sure.  Now, we have to figure out how to proceed while I do daily steroid doses that are making me a bit moon-faced already.

I did get invited to go to Boston, though, to a Co-Creation Conference [which I don’t really know a lot about so far but will be going next week, so I will fill in the blanks then] to speak to medical professionals about my RA journey.  I am so glad that I had this blog, because I can literally go back and read about what it felt like when I was diagnosed and remember some of the things I have forgotten about what it was like when I was dying a bit every day from the pain and exhaustion.

And so, halfway through a wonderful summer break when I have time to actually write a paragraph, I have an all expenses paid solo trip to Boston to look forward to and a chance to share my story, and who doesn’t love a story more than me?