Darkness, My Old Friend: An Update Post

9baf0b6c-7c2a-48ab-bcc1-5cf6f7b35ffbI’ve had a rough couple of weeks.  At the end of July, I got so sick that my doctor thought I had contracted Coronavirus.  Luckily, such was not the case and it was decided after a negative COVID swab that I had an unknown virus causing my symptoms.  I was sent home to rest and drink lots of fluids.  Unfortunately, we still had to quarantine for 14 days just in case the test was a false negative.  That being said, my husband missed two weeks of work and pay.  Now, we’re trying to play “catch up” on all of our bills and obligations.  It seems like I never catch a break in my autoimmune life.

380b00a0-9290-4724-bc13-ef71c618ca93I was supposed to have the cystoscopy with hydrodistention on the 9th of August, but due to the suspected COVID we had to reschedule it for August 30th, which is about two weeks away.  I’m still insanely nervous about this procedure, but it’s the only way to possibly get some relief from the bladder pain caused by interstitial cystitis.  My husband keeps asking me if I’m sure that I want to have it done.  I’m not sure why he’s so nervous about me having this procedure.  He’s not usually the one that worries – that’s my department!  The insecure side of me is convinced that he’s just saying that so he won’t have to take care of me through it, but I know that’s just nonsense worrying my overactive mind.  This man takes care of me every single day regardless of what procedures I’ve had done, if any.  


The hardest part of my autoimmune life is dealing with the mental worries and anguish that seem like a constant these days.  My self-esteem is under attack lately.  I feel so worthless and guilty over getting sick so young and the fact that my husband has to do so many things for me.  It really bothers me that I need him for so much.  I can’t bathe, wash my hair, or dress myself anymore.  He has to do this for me every single day and night.  I can’t stand long enough to cook a meal without becoming overly dizzy.  All of the household chores have to be done by someone else, and that drives me mad.  I feel like a waste of space and a drain on my family.  I’m not even sure how to begin to work through all of this emotional garbage that’s burying me alive.

4abe31b0-d070-40e7-9552-e5a12f8c7f32My Scleroderma symptoms are starting to get much worse.  So far, that disease has kind of been in the background for the most part, but lately it’s making itself known a whole lot more often.  The muscle and joint pain has become unbearable lately.  Last month’s EGD has had no benefit to my esophageal dysmotility issues, so I’m still struggling to eat and still losing weight from it.  I’m also starting to have lung issues, and even though it’s still rather mild, it’s causing me quite a bit of concern. My rheumatologist recently doubled my dose of Plaquenil in the hopes that it would help my pain, but so far I’ve had no such luck with the new dosage.  I’m going to give it another month or so before I give up and ask for something different.  I see her again in October and we’ll likely discuss it at that point.  

a74bcbb9-d6da-4ff3-9657-078d161e9696I hit an all-time low point yesterday and found myself crying big ole alligator tears for hours.  I can’t remember what started it, but I was a wreck for most of the afternoon and evening.  If you know me in real life, you probably know that I rarely (if ever) let someone else see me cry.  I couldn’t even hide it from my kids yesterday, and I always try to hold it together for them.  I never want them to see me that weak and vulnerable, but yesterday it was unavoidable to say the least.  I still feel pretty down today, but I’m trying to be okay – at least for now.

Stay strong fellow warriors and friend and family!  Love and light now and always!

1 thought on “Darkness, My Old Friend: An Update Post

  1. I hope the procedure improves your symptoms! Your husband sounds like an amazing caregiver.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this:
search previous next tag category expand menu location phone mail time cart zoom edit close