Life · The Pit

Lupus (and everything else) Limbo

It’s kind of odd, I initially started this blog over a year ago now to document the more medical/ physical side of my journey in hope that it would help me come to grips with accepting life with a (multiple..) new chronic conditions and worsening symptoms while also juggling motherhood, partnership, mental illness and well… the other bits and pieces that make up life as I know it. I was hoping that keeping a close eye on my daily symptoms and pain points would paint a clearer picture for me and my ‘team’ and that maybe just maybe we would discern a pattern or clue or SOMETHING that would lead to answers and then treatment. I don’t do that anymore…

It’s not just that it became tedious. Trying to understand the rhyme or reason of what this autoimmune disease is doing to my body in the end seemed futile. It does more harm than good, especially when our health care system works at such a snails pace, by the time appointments and tests are being done based on certain symptoms, there’s a whack load of new ones possibly throwing everything out of balance. Pure chaos is what it feels like, and for someone that likes to find the structure of everything (fully admitting being control freak here) it is stressful and depressing.

Having an outlet to rant, ramble and write about all the other stuff that happens right along side illness has been an invaluable coping method. Still, if the whole point started with keeping up with what my body is going through, it would make sense to at least once in a while give a what’s what in the health department.

“Lupus limbo” is really the best way to put this god awful waiting period. Apart from medical emergencies (more on that in a second) my treatment plan isn’t going to change for anything until I see my Rheumatologist, who as of 3 weeks ago’s first available appointment was May 30th. Meaning even with all the information we’ve gotten from the scopes, scans, blood tests and variety of other medicafunkadelic nonsense that has gone on, I still need to physically go see her so she can refer me to a Neuro and so she can sign off on treatment plans that will not interfere with her long term Lupus plan.

This all by the way is information given to me by her receptionist and my primary care doctor. Why the hell she won’t just confer with my GP and Gastro Guy over the phone so we can get on with this business now… I don’t know.

I do know they’re acting overly cautious and concerned because apparently my innards are a complete mystery. Either everything moves through at a snails pace and doesn’t get digested at all or everything stays up in my stomach for what seems like ages followed by a week hugging the porcelain from both ends… oh yea and surprise option number 3 spasms and blood everywhere.

Option number 3 has resulted in 2 hospital trips so far in the new year and a few just really bad days at home. My scopes ‘confirmed’ the bleeding is not from any of the ulcers they found (all either healing, too small for that amount or not open), they also concluded that the ulcers are idiopathic and not caused by an IBD (like Crohns or Ulcerative Colitis) more possibly caused by delayed gastric emptying (don’t get me started that that would mean they aren’t idiopathic…).

From what I’ve been able to piece together from all my previous visits, the paperwork I’ve been able to see and the lab results I’ve remembered to ask for it looks like their leaning towards blaming ANS nerve damage (possibly by the lupus) for my gastro issues. I have had increased nerve pain, tingling and numbness everywhere else over the last year especially, so it’s not a huge leap. It still doesn’t explain the random expulsion of blood and the fact that they can’t find where it’s coming from. Faulty nerves don’t just randomly bleed.

Whats weirder than it happening in the first place, is the fact that it goes away almost as quickly as it starts. For all I know, one of these days I’m going to cough up my gallbladder  or my appendix and BAM… all better. At least I would be able to take it in and go “see, told you something was off…guess you should have looked there!”

In all seriousness though I’m trapped between worrying about what the hell is wrong with me and being pissed off that this kinda shit isn’t making the doctors pick up their feet a little more. I am aware that my walking and talking and refusing to be a good little admittance patient doesn’t help but if they’re not gonna fix me there and they’re not gonna fix me at home… I’m gonna be at home. Apart from when my heart rate does it’s random racing and my hydration/nutrient levels there seems to be very little wrong with me that urgent care could even bother with. I’m the perfect example of invisible illness, not exactly something you want to be exemplary at.

What to do now? Well… like I said, I’m waiting at home. I’m seeing my GP as often as possible (which is half as often as he would like) and I’ve been instructed to run into the ER any time I have stomach pain (are you kidding me, severe IBS, handfuls of medications that can cause upset bowels…) or bleeding of any kind… while we still wait for the fucking rheumatologist.



2 thoughts on “Lupus (and everything else) Limbo

  1. Ugh, that’s a total stinker. I’m none too fond of the waiting game either.

    Are you taking a PPI like Nexium or Prilosec before downing NSAIDs? Anti-inflammatory medications are murder on the innards, particularly if you have slow intestinal transit. Down here, anyone on long-term NSAID therapy gets a prescription for a prophylactic PPI to prevent gastric and intestinal ulcers. It’s just a thought I had, another one being an acquired hemophilia-type disorder since you’re having difficulty eating – some clotting factors rely on exogenous nutrition. Blood rocketing out of your butt is definitely a structural thing and I seriously hope they don’t give up and call it idiopathic (because they’re idiots).

    As for going to the ER every time you have pain or bleeding? Good grief, I imagine you’d never be home! It’s clear that most doctors don’t understand how sick we are and the amount of pain we’re, yet still manage to remain somewhat functional (which is the true definition of tenacity, IMO). I hope you start to feel a bit better BEFORE the long wait to see the Rheumy. I’m sorry you’re having such a rough time. ❤

    Liked by 1 person

    1. Thank you ❤ I'm on omeprazole (Prilosec would be brand label down there I believe) and I do believe it's been doing it's job as well as can be expected. I have also been tested for clotting and if anything my blood is able to clot a little too well (hypercoagulation which is causing it's own risks) which has them even more confused as to why this could happen, but could be why it stops so suddenly. It's unlikely that it's genetic either since hemophilia runs in my family on both sides, so I'm the black sheep. They have scheduled a gastric emptying scan, ultrasound as well as whatever the new Neuro guy can cook up (a lot of the notes mention Fribro still, ANS damage and still possibly MS). Mostly I'm just mentally fucked up so dealing with the tedious physical stuff…is getting in the way of processing. It's either gonna get worse, or it's gonna get better. We've all learned to play this waiting game so well! I definitely don't feel right complaining too much when there are many that have it so much worse than I do. xoxo Hope you are taking care and feeling comfy back at home.

      Liked by 1 person

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