Carelessness and Vulnerability

I haven’t felt this broken in a long time. I haven’t felt this alone in a long time. I’ve never hated and resented my body more than I have the last month. Quarantine is hard in everybody and the effects it has on me are no greater than anyone else’s, but this feels like a double slap in the face. I’ve had to live with restrictions for years now and they’ve become a part of everyday life. Always having hand sanitizer with me, washing my hands a thousand times a day, staying away from large groups of people, not being able to have Ava’s friends come over and play unless I sit down with the parents and explain to then that their child needs to not be a walking German factory. Minus the masks and gloves, the precautions that hundreds of millions of people have had to adapt seem elementary. You should already wash your fucking hands and not being a disgusting creature, the fact that health officials have to tell people to take a God damn shower, is insane. The only normal activities I had, like getting my nails done, going to a family friends once a week, go into a fucking store, those basic, trivial things are the only normal I had and they’re gone. I think most of all I hate how vulnerable I am. I’ve been in 4 buildings in over a month and to the CVS and Starbucks drive thru. That is the extent of my contact with the outside world. I felt like a hermit before pandemic, but this is a whole other level. We have masks my mother in law made and more sanitary products than we usually have, which believe me, is A LOT. Dan’s an essential worker, so he’s working 5 days a week and has to no choice but to interact with people. He takes every precaution imaginable to protect all of us, but there’s only so much can protect yourself from. I don’t feel safe. I don’t feel like there’s enough procedures or equipment that can prevent me from getting COVID19. I wouldn’t survive it. As fucked up as it is to say, I almost welcome it. I say it not because I’m suicidal, but because it would mean that the pain ends. It would hit hard and fast and thanks to my updated Advanced Directive, it wouldn’t be prolonged. All it takes is one infected person to touch the mailbox before I do. That’s it. All the precautions in the world can’t protect me from peoples carelessness.

Enough of that. Health wise, everything has been…meh. I just finished my 4th round of antibiotics of this sinus/upper respiratory infection I’ve been battling since January. This last round was harsh; 1 tab of Amoxicillin twice a day, for 14 days. That fun is courtesy of my ENT. I went for a follow up with him at the beginning of the month at the request of my PCP, who’s just a little uncomfortable with the number of sinus infections I’ve had in the last 9 months. The ENT appointment went in a direction that I was not anticipating. After he had me catch him up on recent health changes (one of the reasons I really like my ENT, is that he wants to be kept in the loop), he scoped me, which is always super fun. Even after 2 prior surgeries (the latest in 2015 that he performed) to correct the left leaning deviation in my septum, the different in airway space is so mismatched. My right side is open with no obstructions and my left has half of the airway space that it should. The solution? Surgery to completely remove the cartilage in the back of my nose towards the sinus cavity on the left side. If you’ve never had any type of sinus surgery, lemme tell ya what, it is SO fucking uncomfortable. You can’t sneeze forma month for fear of ripping fuel internal sutures. Do you know how hard it is have to prevent yourself from sneezing for WEEKS? Not to, mention how paranoid you are of sneezing and hurting yourself. HATED both of my sinus surgeries and I’m less than thrilled about undergoing a 3rd, but I’d also like to breathe properly, so, surgery it is. I first need to go in for a CT scan to map out what he’ll eventually go in and fix. I need to get that scheduled and over with.

Speaking of scans and such, my Pulmonology function testing has still been put on hold due to my still being sick and COVID19. I will however, be scheduling that tomorrow, at the request of my “new” Rheumatologist…
So, yesterday I had my highly anticipated (virtual) Rheumatology appointment with the doctor at Duke that I’ve hated for years. Quick backstory: I had an initial appointment with this guy in the beginning of 2018 and it did not go well. First, he tells me that I don’t look like I have MCTD (that’s a sin in the chronic illness community) and then he takes me off my Rheumatology medications [which at the time were Methotrexate and Plaquenil] for 6 weeks, so he can do his own set of Rheumatological tests. After 6 weeks of absolute misery, I went and did the testing which then reconfirmed my MCTD diagnosis. I never went back and have trashed him to like…everyone. The reason I went back to him, is because he’s my last option and I’m actually really glad that I did. The appointment went amazingly well and it made me question why I hated this guy so much, because he wanted as much information about my conditions and treatments for the last 2 years. He asked me a ton of questions and listened to me give my schpeel about wanting to go on Cytoxan without telling me I was fucking crazy and it wasn’t an option. It’s a medication he’s very familiar with and uses with several patients monthly and one that he’s comfortable using given the right circumstances. I’m going to do my best to explain those circumstances and what our game plan is.

As I’ve written about a hundred times, Cellcept is no longer effective. I’ve been told by multiple Rheumatologists that Cytoxan is my only option for stronger treatment, which is true IF there’s organ damage. The reason Cytoxan hasn’t been on the table previously, is because aside from my liver acting funky and a tiny heart valve leak, my organs have been functioning really well. It’s on the table now, because of the Pulmonary issues [shortness of breathe at rest and after certain actives (like showering) and chest tightness] that have popped up within the last 12 months and have become more intense. I know I’ve mentioned before that the number 1 killer in people with MCTD is pulmonary hypertension, so cardiac and pulmonary function, basically, make or break you. Since my cardiac function is normal, it shoulders pulmonary function with the blame. If the pending pulmonary testing reveals an issue such as Interstitial Lung Disease [another rare disease that causes progressive scarring of the lung tissue], which people with autoimmune diseases are susceptible, then Cytoxan would be appropriate to use. Cytoxan is really effective for treating significant damage to a select group of organs like the lungs and kidneys. What we doesn’t want do, is as he said, “pump me full of poison” only to see no improvement in the areas we’re targeting. I agree. I’ve been pumping myself full of chemicals for several years and I’d like to not.

So, our game plan is this: he placed a shit ton of lab orders to check organ function, inflammation levels, and he wasn’t to do a full Rheumatology workup to check for any abnormalities that have been overlooked. He wants me to get the Pulmonary testing done ASAP so when I have my follow up with him in June, we’re armed with enough information to change or create a new treatment plan. I have to admit that, when he said he wanted to check all of the autoimmune markers to ‘make sure it’s MCTD’, it made me angry and I became defensive. I think the reason for that is having spent 2 ½ years of testing and waiting for answers. MCTD has become so much apart of me, that, as much as I hate it, I’d feel empty without it. I’m not even genuinely nervous, because my MCTD diagnosis has been reconfirmed twice in the past 4 years. It’s entirely possible that I have a 3rd autoimmune disease that is causing some of my worse symptoms. At this point, what options do I have? None, I have no plan B and nothing to lose, so I’m being open minded and compliant.
That’s about it for the evening. I have 3 doctor appointments tomorrow [Endocrinologist, Pain Doc, and Psychologist], which means you’ll get the pleasure of hearing from me again tomorrow. Lucky you!

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