Ok, I’m done. I’m doing a prednisone burst.
I have been waiting for almost a week for my immunologist to get back to me. Current status is spending 23 hours out of 24 lying down most days. Some days its only 22 hours. Good times!
I can’t eat anything without double-over stomach pain that now lasts several hours, so I’m living on coca cola and Hydrolite, and a few bites of food here and there. Maybe some grapes, mouthful of roast chicken (which I usually keep in the fridge for sandwiches), and that’s about it. Coffee, black. Tea, black. Some jelly (jello) cos the Chicklet has her braces on, and she’s eating lots of jelly.
If I eat more than two mouthfuls of real food the pain is bad. It doesn’t seem to matter what I eat, it’s a quantity thing. A very little bit of anything is OK. But eat a plateful of anything, or even a sandwich, and its usually horrible pain. I don’t like that pain, so I basically fast. I can live on a very small amount of food. It’s not a party, but it’s very doable compared to that kind of pain.
When I fast, my inflammatory arthritis is calm, and when I say calm, I mean controlled by 70-80mg of oxycodone daily. Nights are painful, and mornings are hard. But during the day, I can lie on the couch in only some pain.
And that’s all I do. Lie on the couch. Quite often asleep. It’s not really living. It’s existing. But when I can get out, have a coffee, I’m pretty much euphoric. Even doing a grocery shop (which I hate) is a privilege. And then I rest.
My tinnitus is driving me nuts, my hearing is getting worse, I have a constant headache, of varying intensity. I have no energy, probably because I can’t eat. The fatigue (different thing to the lack of energy) means my body feels like it’s made of lead and my mood is negative.
I’m not depressed right now though. For now.
If this level of pain and disability continues, I can’t see that situation holding. My moods and mental state have swung wildly over the last few weeks. Much of it is a blur, my memory is optional and I can’t focus on anything. Time is just going by, life is going by and I’m doing nothing. Because I can’t.
I have left several messages for my immunologist, she is not getting back to me.
I can only infer that the chest x-ray is fine, and my bloodwork is fine…otherwise she WOULD have gotten back to me.
The fact that life isn’t worth living doesn’t count (to her). I told no less than four doctors that I am not coping, that I need answers and a I need more prednisone to function, and that I am suffering severe depression (I was last week) and I am well past breaking point.
And last week I was suffering severe depression, with suicidal ideation, and very purposefully not telling close friends about it. That is too much to put on friends, with their own lives, and their own problems I don’t have a partner. I told DOCTORS. It is their JOB to take care of me.
I allowed myself to get lower and lower and I didn’t hide it from my ‘medical team’. Except my usual GP. Him, I could not get in to see. Hindsight, I probably should have pushed to see him. He would have seen me. But I needed my immunologist and rheumatologist to understand the situation, see me at my worst.
So last week I went down there, to her rooms. I sat in the waiting room until she would see me. I had no appointment, but I made it clear I wasn’t leaving until she did. And she did. She ordered the chest x-ray and the confirmation blood work, and promised me she would call me by Thursday AT THE VERY LASTEST.
And I wasn’t angry. If anything, I was pathetic and confused.
She asked me about my mental health and I told her I was in a world of physical pain, and ‘talking to someone’ wasn’t going to help. I need medical help. But I agreed to see call my psychologist, and she called me later, while I was in x-ray, to tell me that I should call the mental health crisis team. She told me to look up the number and call them. She didn’t actually refer me to someone, give me a name, or even a number. In hindsight I realise she was putting me in the ‘headcase’ basket and shifting me on to someone else.
Poor strategy on my behalf. There I was thinking that admitting to suicidal ideation would get me treatment. I can’t even tell you the whole story yet. It’s a joke.
That afternoon I tried to see my usual GP, I was not able to see him, I saw another GP at the practice whom I’ve seen on occasion. She noted my depressed attitude. She asked about it, I gave her the same run down.
She prescribed me 50 tabs of Valium.
50 tabs of Valium!
I have to beg for 20 tabs to manage severe PMS. But admit I’m deeply depressed and have had suicidal ideation, a mental breakdown, chopped off all my hair (you couldn’t get more cliché than that, seriously!) and she gives me 50 tabs of Valium, no questions asked! Imagine if I were truly suicidal. She basically put a gun in my hand. What the actual???
This is the care factor at the hospital and the quality of medical and psychological care in this town.
Doctors are stupid. I mean really, really stupid. And not one of them will listen to me, or help me. Why they can’t hear me, I will never know.
Yesterday afternoon my ex father-in-law passed away. In recent years I haven’t spent much time with him, but I was married to his son, and was part of that family for 18 years. I had a closer relationship with him than I did my own father. My ex-husband and I are still friends, and he needs my support. My kids are in turmoil, this is the first death they are dealing with. There will be a funeral and a lot of emotion and a lot of stress over the coming days, weeks.
My cortisol levels are fine, but my immunologist said that my short synacthen test was ‘borderline’. That means my body made cortisol in response to the test, but at the lower end of the normal range.
So, decision made. I will be under even more stress over coming weeks, and I need a stress dose of prednisone.
I broke down, to elemental pieces. That didn’t help anyone see. I’m not doing that again.
Anyone who has been on long term steroid therapy and is tapering, or has tapered off, is at risk of adrenal crisis under stressful conditions (such as surgery, medical illness, severe emotional upset, such as a death in the family) and therefore needs to stress dose extra corticosteroids to help manage the crisis period.
So I just took 10mg of prednisone. I looked up average stress doses, and that’s the best I could come up with. There is no universal prescribing guideline for glucocorticoid stress doses, and given that I know my GP doesn’t know, my immunologist won’t call back, my rheumatologist is MIA as usual, and none of my other ‘ologists’ I see would give a toss, I came up with the dose from reading the Medical Journal of Australia, and a few other reputable websites. I gave it my best guess.
I do not recommend anyone self-prescribe ANYTHING EVER!
But seriously, I have tried and tried and tried to get a doctor to listen to me. I have no choice. I am NOT going to crash again. I am not waiting until I need an ambulance.
Tomorrow I’ll take 12mg again, or maybe even 15mg, and will continue that dose until further notice. It will take 3 days or so to feel better, if that dose is high enough. I hope it is. I want to take the lowest possible dose that will help, because I’m in full body megaflare today. And I’m tired. Tired of feeling effing awful and even more tired of being ignored by every doctor I see.
And I am truly disgusted.
But hopefully, in a few days, pain levels will be lower, energy will be higher, I’ll be able to digest food, and finally get off the couch. But I will no longer chase any of my doctors. I’m done with all of them.
I had to let myself get critically ill to make them see. To make them listen. And they still didn’t.
So I abandoned the prednisone taper, and now I’m starting from scratch. Alone.