One of the things that frustrates me most about chronic life is not being able to be consistent. I am still having around four upright hours a day, and that’s a big improvement. I have a few things that I am passionately trying to pursue, my work with CreakyJoints Australia, my Awareables bracelets, my book, pain advocacy and this blog. Obviously, that’s a lot. Honestly, much more than I can manage successfully, but I am the kind of person that always had a dozen projects on the go. I used to be able to manage that with finesse. My mind hasn’t caught up with my body, in that I just physically can’t do that anymore. Not to mention my mind doesn’t switch tracks easily anymore. There are days where I know I have three hours ahead of me and I sit there blankly, unable to remember or consider what the priority was for today, and what I SHOULD be working on. Later, after an hour of pfaffing about, I remember that I was supposed to be doing something else.
So, I’ve been trying to schedule myself. It’s not really working, because that’s not really how I work but I need to try. Four hours isn’t a lot, but twenty hours across a week is. Or rather ten, because I spend at least two hours a day on personal care, cooking, cleaning, basic functions of life stuff.
Last week I had a raft of medical appointments. My GP called me in to run through my blood work. Mostly it consisted of vitamin deficiencies and some minor blood abnormalities. Despite taking prescription supplements of vitaB12 supplements daily, that should have righted itself. So, it will need further investigation. Perhaps a bone marrow biopsy. I also have elevated eosinophils, but these come and go. And they are only minorly elevated. Given we know I have a lot of allergies, its probably just Hay Fever season showing. She prescribed a better nasal spray, one that combines antihistamine and steroid to help with my breathing. That goes along with my 4x180mg of Telfast daily and the Phenergan I take every night. So hopefully I’ll breathe easier.
I have some heart issues, so I need to have a seven day Holter monitor. She said she will write to my cardiologist to line that up. She’s concerned about Atrial Fibrillation.
I have also been having TIAs (trans ischemic attacks) or mini strokes. While I was with her my left arm, leg and face started to go numb. She noticed a droop on the left side of my mouth. I explained to her that I’ve told a few doctors about this, but no one is particularly concerned. SHE was concerned and told me to restart the daily aspirin that I stopped taking somewhere down the line. I think one week I forgot to load it into my medicine pack, and I just forgot about it after that.
She did a basic neuro exam and noted that my left side is noticeable weaker. I pointed out the numb areas and described the pain that I get in my left arm and leg. She asked how long this had been going on, and I told her ‘since the hysterectomy and the complications that followed’. She said she had no doubt that I’d had a stroke and wrote me a referral to a rehab physio. And referred me to a new neurologist whose specialty is post stroke syndromes.
That appointment has led to a new specialist, two non-invasive tests and two new prescriptions. One isn’t on the PBS (pharmaceutical benefits scheme) so I will trial it and see if its worth the $50.00 price tag.
I also saw my gastroenterologist. She went through my pathology with me. I still have eosinophils in my gastric tract, although more in the lower tract. She said this could be refractory reflux, which sounds pretty harmless to me, but she said my eosophagus is quite damaged, so it needs to be managed. She doubled the dose of my proton pump inhibitor, and told me to come back in the new year. I don’t have any symptoms of reflux, so I’m not sure how I’ll know if its working. She just told me to ‘stick with it’. She also suggested manometry to check out the strength and coordination of my esophagus contractions, and how well it moves food down to my stomach.
Another test. I asked her if we could delay it a few months. Try and see if the extra medication was enough. I’ve just had my esophagus dilated, my jaw flare has subsided, I’m eating some solid food, and I have so many other medical things on…she agreed. So that can wait. Relief.
I’m so sick and tired of medical things. Spending my time on medical appointments, scans, blood work. I know many people think I’m a hypochondriac, the truth is I’d give anything to not be so medically high maintenance. Its not fun, I don’t get my jollies out of medical tests. I do not have Munchhausen’s.
We talked about the ongoing diarrhoea, and she said she believed that was Crohn’s disease. Its been mentioned before that I have mild Crohn’s, largely controlled by the medications I take for rheumatoid arthritis and mixed connective tissue disease. Many of the treatments are the same.
I have had severe diarrhoea for many years. I get horrific stomach cramps and when I pointed out where I get the severe stomach pain, she said she felt it was Crohn’s. That shocked me a bit, I assumed it was all to do with eosinophilic esophagitis and gastritis, but she seemed to feel we’ve discussed it before, but I don’t remember. Considering how efficient she is, she’s probably right. I’m not sure how she can differentiate the inflammation at gastroscopy and colonoscopy between eosinophilic disease and autoimmune disease like Crohn’s, but I’ll believe her.
She ordered an MRE (magnetic resonance enterography) which is an MRI of the small intestine to see if there is narrowing, strictures, or fibrosis. This test has to be done now and can’t be put off.
So that’s one more test. We’re at four now I think? I’m including seeing a new doctor as a ‘test’.
She discussed my RA medications, and suggested strongly that I see my rheumatologist sooner and ask for Stelara, as it is a successful treatment for both Crohn’s and RA. It targets IL-12 and IL-23. The most successful biologic I’ve ever had was Actemra, which targets IL-6. She believes all of that means it would be the best choice for me, the highest likelihood of success.
So, I need to ring my rheumatologist and see if I can see him sooner.
And lastly, I had to see my endocrinologist. I’m struggling to remember that appointment. She ran through my thyroid results which seem to be stabilising. They have been all over the place for the last few months, swinging high and low…and not consistent with the doses changes I’ve been making. We’re just going to do nothing, stay at the current dose until my body settles down. Apparently, that isn’t that unusual with Hashimoto’s in the beginning, but given that I’ve had Hashie’s for two decades, its surprising.
She reviewed my bloodwork and found that my calcium is fine as is my parathyroid hormone, so that rules out a few bone diseases. I am low in magnesium and phosphorus, so she suggested I supplement those as well. So that’s two more pills to swallow every day. To add to the other twenty or so.
She looked at the macrocytosis, and said we need to check my B12. I told her my B12 has recently been tested and its fine, because I am on B12 supplements, prescribed by my GP. She said it can’t be, given the macrocytosis. We need to test again.
I asked her if we can push that out until early next year, when I’m having another whole raft of lab tests anyway. She agreed.
She looked at my sex hormones. Estrogen is still high and testosterone low. Estrogen is much lower that it was though, about half. It needs to quarter again before its where she would like it. I’m taking testosterone cream, so I can safely take that daily again. I am feeling quite good on the hormone front, although I am more irritable and moody. I don’t know if that’s my HRT out of whack or my methotrexate. Both are possible. But my estrogen will continue to fall as the remaining pellet in my hip gets absorbed. She agreed that once my estrogen is lower and my testosterone is higher, weight loss might be possible. It’s certainly not possible now.
I told her my prednisone is down to 10mg, and she was genuinely thrilled. I told her that was methotrexate doing its work. She agreed that I can sit on 10mg for a month or two, get through the busy Christmas period, and look at reducing one milligram per month in January. She also felt I should see my rheumatologist sooner and add a biologic to the mix.
She said my morning cortisol was very low, indicting I’m about as low with prednisone that I can safely go, and that I need to be aware of Adrenal Insufficiency symptoms, especially over the stress season – Christmas. She reminded me to watch out for diarrhoea, I reminded her that I have severe diarrhoea every day, and that my gastroenterologist was now thinking I have Crohn’s, though I’m not sure why. She said my vitamin deficiencies point to me not absorbing food and vitamins and minerals via my small intestine, which points to Crohn’s. Along with the cramping pain, the diarrhoea, the blood in the stool, and my history of autoimmune diseases it all sounded very much like Crohn’s.
My bone density is still incredibly high – my hip is four standard deviations above normal and my spine is seven standard deviations. A definite disease state is 2.5 standard deviations and above. It’s definitely a problem. What it actually means, is still up for debate.
The x-rays said my pelvis was normal, but I showed her an old x-ray of my SI joints that referred to sclerotic bone. That caused some consternation, because sclerotic bone is brittle bone and a sign of osteopetrosis, a very rare disease of bone where the bones are incredibly dense. Mine are literally a one in 3 million finding. Whether I am at high risk of fracture is the issue here, that bone density is absolutely a disease state. How concerning it is remains to be seen. She feels it’s a very rare variant of osteopetrosis, as I don’t fit into the current categories. The infant subtype is more severe and always diagnosed in childhood and always fatal. The adult form is much more mild than what I have. I fit somewhere in between.
Either way, there is no treatment, and no prognosis, so it’s just something that we’ll keep monitoring.
She asked me if I’d had a brain MRI recently, as my blood work suggested a possible pituitary tumour. She pulled up a scan from two years ago, and took a look. She said there was something there and she would like a specific pituitary MRI, as the pituitary is tiny and they take more slices when looking at the pituitary in particular. So that’s another test. I told her I’m seeing a neurologist soon, and he will almost certainly order a brain MRI. Can we roll them in together?
She agreed, it’s not super urgent. It can wait a month or two.
And that’s it I think. Four new medications, one new specialist, one holter monitor, and three MRIs. And a bunch of bloodwork that I will do altogether in January.
Tiring. Every appointment leads to three more, or so it feels. I can space them out and put a lot of them off but it all feels so never ending. No matter what I do, this is what my life is, the time between one medical appointment and the next
I haven’t scheduled any of these things. The neurologist has already called and fit me in next week. My cardiologist left a message for the Holter, I have to call her back.
I’ll get to it. I will. Tomorrow.