u/m0ther_0F_myriads

Just to clarify - I don't mean taking a break from treatment.

Just from the never ending, revolving door of doctors and specialists.

I told my husband today I don't think I want to continue down the Mayo route. I don't want any more interrogations about my diet or exercise practices or stress levels or eating habits. No more needles. No more pee cups. At least not for a week or two - until I can catch my breath. And no more new meds. The last one nearly destroyed my body and wrecked my life. I pretty much lost my job and may get booted from my grad program. How am I supposed to explain I got behind bc I was fighting for my life? How is that an excuse for poor performance when I always seem to be fighting for my life? It's my normal.

I promise I'll take my Plaq and supplements and hrt. I won't eat gluten or sugar. I'll exercise. I'll even take the psych meds they gave me to deal with the havoc the disease wreaked on my world. Just no more poking and prodding and feeling like a have to explain myself for not being healthy. Please. I can't handle another blown vein right now.

Is it wrong to want that? To want to just say no for a short while? Probably so. I just want a break so badly.

Hello all. I want to tell you lovely people a cautionary tale about why it is so important to trust your body and your intuition - and also BE YOUR OWN BEST ADVOCATE.

Storytime: I've been on prednisone for a long time. I mean a LONG time. Like several years. I know there are people out there who can count the number of years the have been stuck on this stuff in fives or tens, and I credit the stuff with keeping me alive and functioning when it was needed. But this story is about what can happen when you stay on it longer than it is helpful.

My rheums, you see, never took me off of it. One would tell me we needed to try tapering down, but we never actually got to that point. Another was resigned that I would be just fine on 5 or 10 mg for life. (I was not fine). I had no idea that any of this should be raising all of the red flags - especially because as my disease markers got better and better, I FELT WORSE AND WORSE.

In desperation, I went back to my rheum who gave me Imuran and upped my pred dose. I didn't know it at the time, but this is what made things get dangerous, fast.

I got bad...like REALLY bad...like ghostly white and 90lbs at 5'7" bad...this Spring. I was exhausted from just moving the laundry or taking a shower. I couldn't eat. I couldn't exercise. I struggled to catch my breath at times. I couldn't even think clearly sometimes. Then I started bruising everwhere. My skin got paper thin and the littlest pressure caused it to rip and bleed. I had a hard time stopping the bleeding, too.

At one point I thought I might have scurvy, or blood cancer, or MS, or any number of serious, potentially fatal diseases. I kept going to back to the doctor and getting dismissed because my lupus markers were fine. My Blood Count panels, however, were very not okay and getting worse. I felt like no one wanted to deal with me because no one could figure out why I got worse instead of better. But, I kept pushing and insisting that something was wrong.

Eventually my rheum gave in and punted me to the Mayo clinic where I was diagnosed osteoperosis and macrocytic anemia within the first few hours. But wait... My diet is meticulous, I take hrt RELIGIOUSLY as well as ALL the supplements - and all of those nutrient levels (B12, ferretin, Vit D, etc, etc) where all in normal range.

I didn't understand how this could happen. I was SO careful.

Well, it turns out that prednisone forever (or even long term) can significantly reduce your bone density. Imuran can actually suppress your bone marrow. And, the two together, in some people, are a recipe for hematological disaster. The worst part was that, because I was conditioned that the right thing to do was up my dose of predinsone every time I felt sick, I just kept throwing more and more of it at the problem, making it worse and worse.

I am off Imuran now, recieving regular B12 shots (just for good measure), and tapered down to 2.5mg of prednisone. I am supposed to start fossimax soon and hopeful undo the damage I did to myself being over reliant on this toxic stuff. I am grateful for the perserving benwfit it gave me when I really needed it. But please learn from me and do not overuse this stuff.

Finally, please never stop advocating for your health. If I had given in, and continued on with pred and Imuran, I don't know that I would be alive today.

Edit: Hey all. It was brought up that I really should clarify which meds contributed to my crisis in what ways. FYI see below -

Imuran: bone marrow suppression +  macrocytic anemia 

Prednisone: thin skin + fragile veins & vessels + heavy bleeding and bruising + loss of bone density

Together it was a miserable and frightening spiral that I am happy to be recovering from!

Does anybody else find clumps of their own hair lying around the house? I find them in the dryer, on the floor, on the stairs, in my car, on the sink.... Not just a couple of hairs. Actualy clumps. How long did it last? Did it grow back? Also, does anyone elses scalp kind itch with hair fall?

Please, I'm so tired right no. I have to leave for class in two hours. I don't want to miss anymore, but I can barely move.

Hi everybody,

My 5 month old Golden Retriever/Bluetick mix is generally lovely and well mannered at home but absolutely UNHINGED on a leash. She is highly reactive, but shuts down/ tries to run off when triggered. She's also sometimes just stubborn and refuses to walk or tries to pull me back home.

Harnesses seem to make it worse. Once the harness is on she goes straight to "mush" mode and pulls the entire time. We've had some success with just her collar using the "with me" command and two light bumps to get her attention. But I'm worried about her injuring herself if she gets spooked by something.

I ordered her a Halti, but I saw mixed reviews. Some people said their dogs could get out of them? Others said they weren't sure how to use them. Anybody have experience with gentle leads they can share?