So GP appointment this morning. The main purpose was my monthly pain prescriptions. I have been out of slow release oxycodone for two days, and it has been a good experiment. It makes a huge difference. I still need it. I have been doing well with my pain meds, still holding at almost half what they were before Xeljanz. I’m very happy with that, even if the ‘Don’t even look at an opioid or you’ll turn into an addict!!! ’ brigade are not.
Weirdly he had no idea about my ER adventure last Friday. So which doctor was the ER doctor talking to? No idea.
My OT suggested I apply for taxi vouchers, given that I’m on my own, and there are times I need to get somewhere but can’t drive. Technically I don’t quite qualify, you’re not supposed to be able to walk 20 metres without needing to rest. I can. But I can’t walk for more than 100-150 metres without needing to rest. That’s obviously a lot more, but in the larger picture, seems to be splitting hairs. My OT said I should apply. My GP, however, refused to fill out the paperwork. Again I’m left with the feeling that he really doesn’t understand where I’m at these days. How impaired I have become. (I really must stop smiling so much.) I didn’t have the energy to press the issue. I only want the taxi vouchers for emergencies, when I can’t find anyone to call. He (quite rightly) said that’s what ambulances are for.
Fair enough. Next time I have chest pain, breathlessness, galloping heart rate, radiating pain, etc. I will call an ambulance. It would also be useful for those times when I have an appointment on the other side of town, like tomorrow for example, but I’m not feeling great. A taxi would be safer than driving myself. But I guess I’ll just keep doing what I’ve been doing, and either cancelling last minute, or driving myself anyway.
We discussed my shoulder. The steroid shot into my snapping scapula (scapulothoracic bursitis) was a stunning success. It gave me an 80% reduction in pain. But, one week later, the pain is back. So correct diagnosis, but only a temporary treatment. Surgery is the next step, and it supposedly gives lasting relief. But…surgery. I don’t think I’m ready for another surgery right now. Not to mention I can’t afford another surgery right now!
But I know at some point this pain will become unworkable. It will prevent me from doing any weight bearing, reaching above my head and generally be a pain in my butt. When I get to that point I’ll make an appointment with my wonderful upper limb orthopod and she’ll take care of it. It should be a day surgery, but the recovery time is long. Four months to full recovery. Hmmmmm. Not ready for that yet. It has only been three months since my cubital tunnel surgery. Too soon.
Onwards to stomach pain. Still a daily event. Every time I eat, I get dull, aching pain in my stomach. Sometimes it’s sharp, double over and crumple up pain. Always a surprise! I am eating very few foods – porridge with rice milk, pureed pumpkin, roast chicken, oranges. And coffee. I’ve been giving the red wine the big miss, due to the chest pain and tachycardia, which is also still a daily occurence. The pain after eating varies, but it isn’t related to any particular food. Sometimes I’ll eat pureed pumpkin and double up for the next half hour. Sometimes it’ll just be an annoying stomach ache. Unpredictable.
My GPs thoughts were that it’s just Eosinophilic Esophagitis related. If I had an endoscopy we’d find gastritis again, with eosinophils. He felt I just have to put up with it.
I could push for the endoscopy, but do I really want to be sedated and have a tube shoved down my throat to check out my stomach? Nope. Not really. He’s probably right. That’s exactly what they will find. But putting up with the pain and living on this diet forever isn’t that appealing either. Options? None really.
I was trying hard to find some interesting meals to make with such limited ingredients, but it’s just turning into 1001 ways with chicken…and it’s all pretty samey. Food is not my friend anymore. I’d give my kingdom for a cheese sandwich on fresh, fluffy white bread. Not going there though, I know my throat will clamp shut and my stomach will hurt even more. Not worth it!
So ‘Put up with it’ it is! My life seems to be a lot about that lately. Put up with it!
“I really must stop smiling so much.”
This single sentence made me want to cry. Why is it that we feel we must deny who we really are inside, who we’ve always been. Happy, cheery, life affirming people who enjoy life and love people and love being able to smile despite the agony, the pills, the fatigue.
Just because we smile it doesn’t mean that our days aren’t filled with pain and the daily battle to ‘do’. I find it so sad that so many people can’t see through that smile to the truth, some can, I have friends and family who can, but why is it we should feel that we can’t give our doctors a smile when we greet them without feeling like we have to prove to them how bad we really feel inside.
Please don’t ignore your stomach pains. I have RA/Sjogren’s (all kinds of autoimmune issues) and I’ve lived on prednisone/ biologics/ gabapentin etc. for the past 5 years. I just had major surgery, an ileostomy from severe Diverticulitis that perforated. The doctor took 10 inches of my intestines. We RA’ers are so used to daily pain that we tend to tolerate more and more of it. I did that and it almost cost me my life. If your stomach pain continues please don’t stop until you have answers to what is causing it.
Hi Kerry, I’m so sorry you had to go through that! But I’m very glad they found the problem and you’re still here to tell the tale. I will google diverticulitis, but clearly it was a very major surgery. You’re so right about pain…we just get used to it. Doctors even bluntly tell us to just get used to it, live with it. I wish you all the very best in your recovery and less pain in the future. Xx