https://themighty.com/2016/11/being-told-theres-no-cure-for-my-illness/ I can’t tell you how timely this article is. Or looking back seeing all the weird symptoms that made me feel like maybe the high stress levels over the past few years were finally making me snap after all. Yet, now there is a real medical reason-almost a sigh of relief mixed with a dose of oh snap (to put it lightly). I had a much harder time bouncing back from this summer of taking care of my mom. I even found a free NordicTrack cross trainer I was starting to use to get myself in shape again. Definitely had put on a few pounds. All of my self-care strategies that I’ve developed over the years weren’t quite cutting it. The constant exhaustion, or if it went away & I worked back up to my “normal” pace-it would wipe me out quicker & take longer to bounce back. My ability to retain information & string together details & documentation were taking a hit too-it was like I had a fog in my head. Highly technical meetings/research articles/even stringing together my thoughts into sentences so that I could communicate with teams of people on a technical level- suddenly not registering in my head. Simple conversations- I’d get lost or not remember what was said. Suddenly lost while making plans (this is catastrophic in this household of 5). My brain felt scrambled. September brought about a round of near pneumonia-I spent 3 weeks just resting as Dr. ordered. Even my doc said “Mary I haven’t seen you this sick in a long time, you need to stay off the NordicTrack for now & give your body rest. By the way, the reason your mom is doing so much better is because of the great job you’ve done taking care of her, so you need to do the same for yourself.”
I’m not the one who gets really sick. I’m the one usually putting together care teams for people & being the lead caregiver to my small army- I take care of those who are really sick. In October, I noticed severe water retention, higher heart rate, and then my blood pressure shot up & crashed within hours. The mental cloudiness continued. I noticed it when I was invited to a fundraiser with my old work crew. I couldn’t carry a conversation & things were awkward-I wanted to say it was them, but it was me. I went to Florida to surprise my Dad for his birthday-blessed to have 2 nurses to stay with for a week. They witnessed some of symptoms, confirmed things weren’t just in my head, & made me promise to call the Dr. as soon as I got back home. I did. Still ended up in the ER with a racing heart & BP jump all while reading a book in bed. Cardiac stress test passed. I was told there was something going awry, it would be like solving a puzzle, but it was good I was seeing my primary care doc in a few more days.
I saw my doc. He agreed something was up. Sent me for a lot of bloodwork. Said come back in 2 weeks. I posted that I had 7 vials of blood drawn for a work up. Part 1 of puzzle solving. Normally, my doc’s office calls if anything is off in the results. So, 2 weeks of nothing & I thought “great no news is good news”. I got a cold the Monday before Thanksgiving, had a meeting Tuesday, and by Wednesday a swollen throat-did run out to finish shopping for holiday dinner but all the in between times-I rested, hydrated, & self-cared. By Thanksgiving night I had developed a mouth full of sores, horrible congestion, tight chest, & by Friday was at Urgent Care. With a virus-but another round of prednisone to help with the swelling (again-there’s a theme brewing). My blood work follow up was on the upcoming Monday (3 days) anyway, so I thought the timing was perfect. I was going in to say “hey hey look at my throat & how in the heck did I get another sinus infection, & yes Larry loves my sultry hoarse voice but…. Yes, I brought my blood pressure machine & yes it is still all over the place”. I thought the Dr. would look at my throat, confirm the sinus thing, look at the blood pressure readings, and recommend some more testing. Side note: This is also my family’s doc, so he knows exactly what I’ve been through over the past few years & there is comfort in having him to take care of me plus he’s aware of family medical history.
My appointment didn’t go like I thought it would. I did start it off telling him how weird I felt & asked him to look at my throat. He wanted to tell me about me bloodwork first(no phone call remember). “Your cholesterol is a little elevated (I do not have a gall bladder so that can happen & can be easily fixed), but I’m not too concerned about that at the moment. You are negative for anything heart related persae. Blood sugars are normal. Liver function, kidney function good. BUT, you definitely have an auto-immune something going on. It would explain your joint pain, cysts in your finger & hand, hair falling out, & dry skin. Nails breaking. And now your mouth sores along with dry mouth you’ve been noticing (See, told you I have brain fog-I forgot to mention those other weird symptoms) “Mary you have Sjogren’s Syndrome but yours is a secondary infection. Your primary diagnosis is going to have to be done through a rheumatologist. You do not have Rheumatoid Arthritis according to your blood work though (as if that would be easier than what could be coming). There is something else but it takes years sometimes to diagnose (avg. 4 yrs-string together my cardiac & GI issues & other stuff-I’m in yr.3) & it is difficult at that. There are like 8 different tests and you have to be positive on 5 of them for the confirmed diagnosis. You already have 2 of the 5.” Well considering I have the genetic disposition to boot-added bonus.
I was recommended to go to a practice in Annapolis that is moving closer to here in the coming months. The practice is award winning-all reviews top notch. The problem is I have a 2 month wait. So, me being me, I’ve started researching. The fun part is, I have a partner in crime, who beat me to the research. It was Larry who was the first one of us to start researching-my star advocate apprentice . You know there is a story there-but that is one that well……remains to be seen if it will ever need to be told. We’ve been reading together, telling the kids bit by bit what’s up, already decided to order Christmas dinner from Wegman’s. The counter is full of vitamins, supplements, I’m reading all about anti-inflammatory diets/the Mediterranean diet, & as much as I hate prednisone, I finally started to take it like I was supposed to over a week ago. In my research, I stumbled into a friend 500 ft away that knows a few people with Sjogren’s. I reached out to her. She said the hardest part is the in between of getting the initial diagnosis then coming up with a care plan. She’s not kidding. It is hard. I do not like limbo. I take things head on. Type A personality all the way. Dot I’s cross t’s. Systematic. Have answers. Only mysteries I like are books & movies. Now I have moments that I can’t even think straight & get lost in conversations. Want to start a list & write stuff down to help me remember but can’t remember what it was I wanted to write in the 2 minutes it took me to get my planner. Not my kind of mystery. Don’t even get me started on the fatigue. That was the first thing & is one of the worst. Mrs. Jetsetter is benched (hopefully just temporary).
So, welcome to my newest part of my journey. Always an adventure. And just like my blog states, I’ll continue to look for the simple pleasures & pass them along. Appreciate if you do the same. I already had some sweet little things to share-I just temporarily forgot them as I’m typing. Ha!