I need to get a handle on where I’m at. I have so much going on healthwise, I keep losing the plot…losing track of scans, tests, bloodwork, results, appointments. And there is so much I get overwhelmed and can’t organise my priorities. So this is for me, to sit down and figure out where everything is at, what is important, what is not and create some kind of priority list. Maybe it will be useful to others as well…people who are interested in my health. Most people only know a small fraction.
I am always telling myself if I can just get this surgery or this procedure behind me, things will get better. Or once this medication starts to work, things will get better. Or once I’ve had that consult with the professor, who’s known to be one of the best in this country, and maybe the world, things will get better.
It’s endless. A fairytale I keep telling myself because it never happens. Before issue one is resolved, issue two has taken centre stage with issue three waiting in the wings. And these are not small issues, we’re talking serious autoimmune diseases, possible cancers, genetic testing. The big guns.
So lets start there.
Leukemia, lymphoma and multiple myeloma
I saw a haematologist in June because my platelet ocunt has been persistently high. Not hugely high, but consistently in the 500-600 range. Too high to ignore. I asked my GP for the various tests to rule out reactive thrombocytosis (in short, all the temporary or harmless causes of high platelets). So that left looking into the various blood cancers that high platelets can be a sign of.
So far everything is coming back the way I’d like it – negative. Today I received the results that show I do NOT have chronic myelogenous leukemia (CML). The test was the BCR/ABL 1 genetic test. Negative. Excellent.
Due to my rare bone disease and a few blood markers, I am at higher risk of developing lymphoma and myeloma. Lymphoma is a blood cancer, myeloma is a plasma cell cancer. I am also at higher risk of developing myelofibrosis, a cancer of the bone marrow where the bone marrow is gradually replaced by fibrosis or scarring. Eventually the bone marrow fails and you die.
All of those tests are still pending, it will likely take a few more weeks for them to come back. Fingers still firmly crossed. While I don’t think about this stuff very often, its there are the back of my mind. Whenever my mind wanders there I quickly force it elsewhere.
Worry is the thief of joy and completely pointless. Worrying won’t change the outcome. Worrying doesn’t change the future it only robs you of your present. All of those cliches are true.
I had a kidney ultrasound on Monday. I’m not expecting any problems there, just a standard “keep an eye on it” type test. Looking for kidney stones too, but I don’t have symptoms of kidney stones. I actually wanted to skip this test, I think it was a waste of time. I should get those results on Friday.
Skull vault osteoma
The bony lump on my skull on the left side above my temple is a skull value osteoma. Harmless, unless it grows to compress the cranial nerves, which can cause pain and hearing loss. Interestingly, I already have hearing loss on the left, so maybe this is the cause. It is slow growing, they say, though it has increased in size quite considerably in the last two years. The report doesn’t say that its compressing any nerve structures, but given my hearing loss, it may be. And often radiologists don’t look for something unless specifically asked to.
Some people have skull vault osteomas removed for aesthetic reasons, but I can hide it with hair. Or a hat. Or a scarf. I do get headaches centring around the tumour, but they aren’t severe. More achey and annoying…usually I take them as a sign that I need to rest, anyway. So its useful! A positive from a negative if you will. Most likely it will never get large enough to require surgery. So its on the backburner, and also a relief because it’s a benign tumour.
The interesting part is how it may fit in with my extremely dense bones. I was told it was a sign of osteopetrosis, a very rare disease of the bone. My endocrinologist says I have a type of osteopetrosis, but I don’t fit into the current categories. Its more severe than the benign adult form but not as severe as the fatal infant form. So really no one’s sure what it means for me, and my prognosis. We do know I am at a higher risk of developing blood cancers, as stated above.
Extremely high bone density
I have bone density that is six standard deviations higher than the average person my age. It’s an extremely rare finding – 1 in 3,500,00 people rare.
This is a great thing for someone who has been taking prednisone for years, right? Standard joke my doctors and I make. The problem is, we don’t know if my bones are extremely dense and hard, or extremely dense and brittle. Its looking like extremely dense and hard because my neurosurgeon who did my three-level spinal fusion last year said he was afraid he was going to break his instruments on my bones. They were THAT hard. That’s a pretty good indication that they are dense and hard.
Dense bones can easily become brittle bones, however. Multiple doctors have talked about doing a bone biopsy for years now. Maybe one of these days one of them actually will. More on the implications of my bone density and osteopetrosis diagnosis in the headings below.
I had an MRI recently to check on progression of my pituitary tumour. There are two tumours, both microadenomas. One is only 3mm and the other is 5mm and neither has grown. So this is also good news, they haven’t grown in two years, they may never grow larger. Or very slowly. So I will likely never need surgery to have them removed.
Hormone-wise, I still don’t know for sure if they are affecting my pituitary hormones. I have adrenal insufficiency and it has been assumed that this was caused by years of corticosteroids taken to control my rheumatoid arthritis. But…the adrenal insufficiency may be caused by these tumours suppressing my ACNT production. (ACNT is the hormone that tells the adrenals to release cortisol). My adrenal glands work fine, but my ACNT is low. My endocrinologist has never bothered running the tests to figure out the two. More on that later.
May as well stay on endocrinology. I have taken desiccated pigs thyroid as treatment for my Hashimoto’s for about 15 years. The usual treatment, levothyroxine (T4 hormone replacement therapy) doesn’t work for me. I am the rare patient who does not convert T4 to the active hormone in the body, T3. Therefore, I need thyroid hormone replacement with a combination of T4 AND T3.
Most people do fine on T4, it took me years to find a doctor who would prescribe the desiccated pigs thyroid, which is literally ground up pigs thyroid glands which contain all the thyroid hormones. It was the standard treatment for hypothyroidism before synthetic T4 was produced (levothyroxine).
When I was on T4 only therapy I was still hypothyroid. I was 15 kgs overweight, I was always cold, depressed, tired…I felt terrible. For 10 years! Three months after starting the combination therapy I’d lost the 15 kgs (which I hadn’t been able to shift in ten years of hard exercise and extreme dieting) and I finally felt well.
Now, 15 years later, all the good endocrinologists who have kept up to date on hypothyroidism accept that some people do not convert T4 to T3 in the body and prescribe synthetic combination therapy. My new endocrinologist switched me over, because he’s a Professor, previously a state head of the AMA, and he’s one of the best endocrinologists in the country. Undisputed.
When my current endocrinologist realised that I’d refused her demand to switch to T4 only therapy, she was furious. She ranted at me that I can’t see a different endocrinologist while seeing her. I replied that I was seeing the professor because she had refused to treat my massive weight gain, and I consulted him about that. Which he has successfully treated, and the first step was looking at my thyroid. I told her the only reason I was here was because my immunologist told me to see her. She denied my immunologist consulting with her, I said nevertheless that’s what he told me. I cannot help it if he lied. I was close to losing my temper with her, but I said all of this politely and evenly. She said she would run the tests he’d requested (uh, I thought he hadn’t consulted with you???) and see me ONE more time for review. I agreed, in my head thinking that I wouldn’t bother with the review. My other endocrinologist and immunologist can review the results. I can’t stand this woman.
Anyway, the upshot is that I am now on T3 (liothyronine) and T4 (levothyroxine) for my thyroid. I prefer it to the desiccated pigs thyroid, because its made in a commercial lab to strict quality control. The desiccated thyroid needs to be compounded, and I’ve never quite trusted that. My dose has been adjusted and my thyroid is now fine.
As stated above, my endocrinologist has never bothered to figure out whether my adrenal insufficiency is due to long term corticosteroid use or because my pituitary tumour is suppressing hormone production. Why does it matter?
If it’s the corticosteroid use, my pituitary function MAY recover. If it’s the tumour, it won’t.
My endocrinologist continues to insist I reduce my hydrocortisone use to a level that causes me to go into adrenal crisis. As in, I am weak, nauseous, dizzy on standing, have kidney pain, severe diarrhea, vomiting, and can do nothing but lie down. When I get to the point that I can’t even keep water down, I go to the ER and they give me steroids and hydration. Adrenal crisis confirmed. But my endocrinologist says that I can’t be in adrenal crisis on the dose of hydrocortisone that I am on.
Whelp…the ER docs sure think its adrenal crisis. They treat me with corticosteroids and I get better within hours. That’s a pretty good confirmation.
Alternatively, its something else that looks a lot like an adrenal crisis. The symptoms are pretty broad, could be something else. But she doesn’t bother going looking. She has decided that I am a hypochondriac and take myself off to the ER when I’m feeling a little off colour.
This is the most offensive thing…I am the absolute opposite for a hypochondriac. And I am tough. I have had to be very, very tough. Truth is she’s just lazy. She has NO idea and her ego can’t take it. I have moved to a different endocrinologist, he’s been treating my weight gain, but he hasn’t taken on all my other endocrinology problems. She started this process and my immunologist said he was conferring with her about me as he’d asked her to perform these tests (the MRIs, the brain CT, the kidney ultrasound) because he’s assessing my bones, looking for further evidence of disease. These are things she should have done from the beginning, two years ago, but she couldn’t be bothered. Or she didn’t know. I have several very rare diseases, fair enough. But freaking LOOK IT UP, that’s your job. There’s a whole raft of blood tests that she should have done, and urine tests. Thanks to Dr Google (from reputable medical websites) I know exactly what tests she should have run ot investigate my bone density, but she didn’t run them. For two years I’ve been seeing her, and she just runs the same basic bloods over and over, lectures me and calls me names, tells me what I difficult patient I am and that she’s sick of dealing with me, and then tells me to come back in three months.
I had to keep seeing her because no other endocrinologists were taking new patients. But after she called my behaviour “stupid” I stopped seeing her. Until my immunologist told me he was going to talk to her and for me to make an appointment with her so she could run the necessary tests.
So that’s where we are. I’m seeing her in September to get all these test results (which I’ll be able to download for myself soon) and her interpretation of such. Her opinion is worthless to me, but I want all my records transferred amicably to my new endocrinologist.
Plus I am a very polite person. Through all her sitting there berating me and getting angry at me because my test results are anomalous and she can’t interpret them, I remained polite. Smiled. Calm. Did NOT bite back, because I’m not going to let her sink me to her level. I’m always that way. If you see me snap or get angry, you know someone has pushed me a very, very long way. One more appointment with her and I’m done.
For the last few months my already meagre diet has become even more restricted. I was down to eating well cooked chicken, mandarins, apples, porridge with banana, rice, pumpkin, sweet potato, potato. Occasional well-cooked beef. Occasional cheese. Occasional white bread. Occasional egg.
That was about it. And each “meal” could only consist of three or four bites, otherwise I would experience severe stomach cramps and immediate diarrhea (postprandial diarrhea). I had two small meals a day.
For the last week I’ve been unable to eat at all. Coffee is OK sometimes. Tea is ok sometimes. Juice is ok. Most of my calories are coming from juice right now. Its pretty miserable. Even when I was living on a few glasses of juice a day, I still have severe diarrhea…I mean the watery stuff like when you’re prepping for a colonoscopy. And lots of stomach cramps. I have to get up in the night to go to the toilet, the diarrhea cramps wake me up and I have to get to the toilet urgently. It really sux!
I will tell my GP and he will refer me to another gastroenterologist. My last one was lovely, but she retired and didn’t refer me on. I have had lots of gastro type testing, its not Crohn’s, but there is inflammation. I have eosinophilic esophagitis, so it’s assumed that I have esosinophilic gastroenteritis and colitis. Reasonable assumption. Given I can barely eat at all now, its time to get that confirmed or ruled out. I need to be able to eat.
Swallowing problems and voice hoarseness
The last few months I have had increased difficulty swallowing. As I said, I have eosinophilic esophagitis, the swallowing problems are most likely related.
But. I am eating a very restricted diet. I have had a clean scope on this kind of diet before, so unless I have become sensitive to more foods, this should not be happening.
I’m also on 5mg of prednisone. Eosinophils are very sensitive to prednisone, so it should be curative. Both my immunologists and previous gastroenterologist told me that I should not be having symptoms at all on prednisone, and they should not be detecting eosinophils on my biopsies…but they were there. A biopsy is irrefutable, I do have the disease, and it is non-responsive to prednisone. Very rare, apparently. Impossible they said, actually. Don’t worry, I’m used to being “very unusual” “very rare” and “anomalous”. It’s kinda the story of my life.
Some doctors cope with it well, other doctors don’t like the challenge of me as a patient and will gas light and victim blame. Finding new doctors is fraught…I need the kind that like a challenge, or at least don’t get nasty about it.
The swallowing problems are so bad that taking my medications is difficult, even the very small tablets. I take about 20 tablets a day, and it takes me hours to get them all down. It’s painful and sometimes they get stuck in my throat. Some days I can’t even swallow water…water gets “stuck” in my throat. My esophagus spasms which is very painful. It can last a few minutes to half an hour or more. When food gets stuck, worst case I have to go to the ER to have the impacted food removed. Even water is impossible to swallow sometimes, but with water there is nothing impacted, it’s just the spasms closing my esophagist and forcing me to regurgitate everything. Obviously not fun and potentially embarrassing and messy as well.
I’m trying a proton pump inhibitor because I know that’s the first thing a doctor will suggest. If it helps, great! I doubt it will though, and it will save time and another appointment if I start taking one. They’re available over the counter and I’ve previously had them on prescription, so its fine.
I’m going to try eat some food today, because I haven’t eaten anything solid in three days. Maybe this is a transient thing and will go away. I have to keep trying small amounts of “safe” foods despite the risk of being sent to the bathroom for half an hour.
Added to the swallowing problems is the loss of my voice. I am completely hoarse. People are finding it hard to understand me.
And while most people will classify this as a very small problem, I can no longer sing. Big deal? Well it is to me. I am a singer. Its part of who I am. Singing is something that makes me happy, brings me joy. I was a very good singer. I had a great range and a great voice. I had a record deal in my distant youth. Singing is stress relief, singing can pull me out of a depressed mood, singing energises me.
So yes, it’s a big deal. It’s another thing that illness and disability have taken from me. Another joy from my life.
I don’t know if there is damage to my vocal cords and esophagus. It may be reversible, or it may be permanent. Not being able to speak loud enough to be understood is difficult and disabling. Losing the ability to sing is depressing.
Essential thrombocythema myelofibrosis
For the last 18 months I have had high platelets. Not extremely high, somewhere between 500 and 600. My labs normal range is 150-400. So its high, but not mega high. Because most GPs don’t know anything about blood cancers like essential thrombocythemia and myelofibrosis (high platelets often being a presenting sign of which) all my doctors just ignored this. Until I brought it up. My rheumatologist was concerned but had bigger problems to deal with. My neurologist was concerned and referred me onto a haematologist. I’ve had a range of genetic testing bloodwork done, and as I said above, the first one has come back negative for CML, a form of chronic leukemia.
Still on the list are essential thrombocythemia (ET), which is one of those cancers that you live with, it’s a chronic disease and most people who have it die of something else. So while it’s not a terrifying diagnosis, its still a serious one. Some people who have ET do progress to more life-threatening cancers, so its not trivial, either. Given my history, I’d much rather not have ET, thanks.
Ofcourse there are many other causes of elevated platelets. I asked my GP to run the bloodwork to exclude those before I saw the haematologist and showed him the results. He is one of the few doctors I’ve encountered who was very impressed with my little file of bloodwork results that I left with him, and that I had my five-minute spiel to explain my history and what had been ruled in and out so far. He said that saved him a lot of time and meant he didn’t need to rerun a bunch of tests. He was genuinely pleased with having an informed, educated patient who understands some medical terminology and the basics of the diseases we’re looking at.
Myelofibrosis is a rare bone marrow cancer. Bone marrow is where red blood cells and platelets are made, so that’s the connection. I already have an elevated risk of myelofibrosis due to my extremely high bone density – osteopetrosis. Now these elevated platelets could be the first sign of that disease developing.
In myelofibrosis, the bone marrow is replaced by scar tissue (fibrosis). Scarring of the bone marrow means that it can’t produce the blood cells required by the body and that can lead to significant symptoms, most commonly severe fatigue. Given that my biggest problem for the last few months has been extreme fatigue, even in the context of someone who has RA and adrenal insufficiency, I am a little concerned. Undergoing testing for any cancer is stressful, but usually there are too many other problems that are more pressing to sit here worrying about myelofibrosis
But I admit to having had a few nights where I can’t sleep and I’ve been…afraid. It passes quickly, I play a game or read a book. I do not dwell.
Myelofibrosis is considered a chronic leukemia, but it’s a BCR/ABL1 leukemia. My negative blood test does not rule out myelofibrosis.
Myelofibrosis is terminal, it has a median survival of 6 years. It is reasonable to be a little anxious at times. One the upside, I do not have anaemia, which is a common symptom and my LDL is only very occasionally elevated. These are good signs and makes myelofibrosis much less likely.
Depending on what that shows, a bone marrow biopsy will be the next step. Obviously, I’m hoping all the bloodwork comes back normal. That would be a load off and negate the need for a bone marrow biopsy.
I have constant sinusitis. A constantly running nose. If you think that’s no big deal, imagine having ahead cold your entire life. Constantly needing to blow your nose or wipe your running nose. And I do mean constantly. My nose just runs. All day every day. It sux.
Eosophilic esophagitis is comes under food allergies, technically. There are medications but I have trialed them all to no avail. My immunologist can only suggest a very strict diet, which is not working. I can’t eat at all right now.
I haven’t had a bad angioedema attack in months. I suspect that because my oestrogen levels are dropping, because I am finally perimenopausal, the angioedema is disappearing. Oestrogen causes angioedema. I also take testosterone cream daily and that too stops angioedema attacks. So all good on that front.
Hives and itching
I have cholinergic urticaria, basically I’m allergic to heat. Anything that causes my body to heat up – exercise, a warm shower, a hot day, makes me break out in hives. I haven’t been exercising lately so I’ve had fewer attacks, and its winter as well. But the attacks were getting worse. Even just taking the dogs for a gentle walk, barely raising a sweat, made me break out in hives, and in more places. Usually I get hives down my neck and around my torso, but I was getting larger patches, more painful than itchy and they were lasting a few hours, rather than 30 minutes to an hour. Not exercising has stopped this though, but I do want to increase my exercise again, when I’m able. And this will become an issue again.
My neck is a very common place where I get hives, and I have an ongoing rash here. After my most recent severe cholinergic urticaria attack six weeks ago, the hives here never cleared up. They aren’t obvious, you can’t see them unless you’re very close, but you can feel the “bumps” underneath the skin. And they itch. And its very, very annoying.
Some people rank itching worse than pain…I don’t. But itching constantly is very, very uncomfortable and unpleasant. I take four times the daily dose of fenofexine (antihistamine) daily (two 180mg tablets morning, two at night. I also take phenergen at night. The daily recommended dose is one 180mg tablet daily) as prescribed by my immunologist to control the hives. This is no longer working, not controlling the itch or the hives.
I have mixed connective tissue disease (MCTD), rheumatoid arthritis (RA) and ankylosing spondylitis (AS). These are all forms of inflammatory arthritis, and I tend to count them as one disease. The main disease is mixed connective tissue disease, as rheumatoid arthritis is one of the overlap conditions associated with MCTD. But no one has ever heard of MCTD and I meet the criteria for RA, so I do have RA. And the RA component of MCTD is what we’re focusing on treating. Interestingly I may also have psoriatic arthritis, because I may have psoriasis on my foot, but I haven’t been formally diagnosed.
Anyway, status. At the beginning of this year I had to stop all my mediations due to extremely elevated liver enzymes (in the 400s). I was assessed by a hepatologist (liver specialist) and he concluded it was due to the olumiant (baricitinib) I was taking for my inflammatory arthritis. He recommended I stop it, and I should never take it, or any other JAK inhibitor again.
Fine. Except JAK inhibitors are the only class of medications that have helped my rheumatoid arthritis. So its not as simple as that.
A new JAK inhibitor, rinvoq (upadacitinib), was available, slightly different in mechanism than olumiant or xeljanz (tofacitinib) which was also very successful at treating my RA. So we tried it. Twelve weeks later at follow up I explained to my rheumatologist that I’d gone downhill radically. I’m no longer exercising, fatigue was terrible, barely able to function. Not able to walk unassisted more than 10 metres. Very disabled. Very sick.
Also, I’d restarted prednisolone to help me manage while we figured out what to do, and then waited for the rinvoq to kick in. Now I’m unable to taper off the prednisolone. I can get as low as 4mg daily, but any lower and I collapse to the couch, with fatigue, dizziness, nausea and vomiting, diarrhea, and unable to eat or even drink water sometimes.
My rheumatologist was not happy and admitted he had no idea what to do. We’d already gone against the hepatologist’s advice by trying rinvoq. My rheumatologist said we could try alternating Xeljanz and Rinvoq. Two weeks Xeljanz, two weeks Rinvoq. He’d never tried anything like this before and he said he needed to confer with his colleagues, as I’m a very complicated patient. In the meantime he gave me some samples of Xeljanz.
I’m grateful that he’s trying to be creative, even trying a treatment plan that likely no one has ever tried before.
I’m grateful he has the humility to admit that he’s going to need to confer with his colleagues.
I’m grateful that he’s bothering to try…many doctors have thrown their arms up in dismay and told me there’s nothing they can do for me, and to leave. Literally victim-blaming and feeling no responsibility to help me, even referring me on is better than just giving up and blaming me for being “complicated”.
Within three days of Xeljanz I was upright again. Now, after almost two weeks, I have four functional hours most days (a big improvement on zero functional hours) and only two bedridden days. I haven’t restarted exercising, not quite there yet, but my fatigue is much improved.
I messaged him to ask if I can retry Xeljanz with careful monitoring. After much thought, he agreed. He said “we do not appear to have any other options. But we do know that your liver will be affected at some point. At that time we can reduce the dose, or stop the medication. You need to confirm that you accept the considerable risk of liver damage.”
I have no choice. I signed away that I do understand that there is considerable risk with this treatment option.
This is not a “hurty” injection, or a small allergic reaction at the injection site, or two days of nausea after taking the medication. This is a serious, potentially life-threatening side effect. I am accepting a very large risk.
The alternative is a life in bed, however. And I do not want that. I am hoping that Xeljanz will buy me a few more months. And there are always new JAK inhibitors in the works, maybe we can try another one when my liver starts to play up. Right now my liver is on OK shape. All the testing showed that. So I have some breathing room. I need to be very diligent with my monthly blood tests, I promised I would be. But right now I’m almost a week overdue. I need to improve. Its just so hard to get to the bloodwork place. It take most of my energy for the day just to get a blood test. And I hate that.
But I have no choice. When you get to this stage of disability many choices have already been taken away. And its hard to live a life without choice, especially in a free society where most people have endless choice.
Now the next problem is GETTING the Xeljanz. I have enough for another three days. My rheumatologist texted me that I we can retrial Xeljanz if I accept the risk…then no further information on when or how I will be getting the medication. Usually scripts take 4-6 weeks to approve through medicare. I texted him to ask if he had more samples to tide me over, no response. I called this morning, again, to ask how I can get the medication. I do not want to stop taking it, fall apart again, and have to start over. It takes two weeks to kick in fully and I don’t want to go through that again. Just as I am starting to feel the real benefits.
I will likely have to stop in three days, and will fall to pieces again., be bedridden again. Its beyond frustrating.
Over the last year or so my peripheral neuropathy has been getting much worse. It is both more intense, hurts more, and its climbing higher up my arms and legs. Its now over my elbows and mid- thigh some days. It literally feels like being stabbed with hundreds of tiny needles, constantly.
To state the obvious, its not very nice.
It also causes numbness. Which is weird, because my feet often are numb, I can feel if someone is touching the top of my feet, but not the bottom, and yet they HURT as well. They usually feel as if they are frozen.
Have you ever been to the snow, your feet got wet, and they go numb from the cold? They are so cold they hurt? That’s what my feet feel like all the time. I started using a cane because I couldn’t feel my feet properly which affected my balance. The cane helped with balance to begin with, but now the combination of the muscle stiffness and muscle weakness and the peripheral neuropathy mean I need my walker again. I can’t walk more than 10 metres without assistance, and I tend to hold on to objects as I get around the house.
My hands/arms aren’t as bad, but they are progressing. I drop things often, I don’t have the finger dexterity I used to. This makes running my business much harder, but I have to keep trying. My business is struggling and I am struggling to meet my bills. Its extremely stressful and that stress sure doesn’t help my health.
For the last year my fatigue has been much worse, to the extent that I think there is something else going on. Some other disease process.
I get so exhausted I need to rest often. Walking from a store at one end of the shopping centre to a store at the other end is exhausting for me, most days its impossible or not worth it. I need to rest once or twice in a five-minute walk. I am using my wheelchair more and more at home. I need to learn to take it outside and become comfortable going out on my own in the wheelchair. It’s something I have a lot of anxiety about, so I’ve been looking for a support worker who can help me. I need to find someone I have rapport with and can trust. That takes time. I have a lady coming this afternoon, I am hoping she will be the one. I need someone to help me initially so I can build confidence and go out on my own.
The wheelchair only weighs 7kgs, but it’s a lot of me to put it in my car. The power assist is 8kg, again not heavy for a normal person, but its exhausting for me. Just getting everything in the car, driving and then unloading the car at the other end is too much for me right now.
I need more energy or I need a support worker. I’m afraid to go on my own in case I get “stuck”…get to the shopping centre and not have the energy to get myself back home. Once I’ve done it a few times, with support, my confidence will build and I’ll be able to do it on my own. Or, I will realise that it does take too much energy, and I will accept that I can’t get out on my own anymore.
For the last year I have woken up with this horrible pain in my leg muscles. It feels like I have been clenching my muscles tightly and can’t unclench them. But my muscles aren’t clenched…its hard to describe. The pain is similar to what I experienced from the nerve compression in my lumbar spine, but not the same. And its down both legs, not just the one leg, so it isn’t coming from my spine. It wakes me from sleep, there is no position I can get into that relieves it, only opioids take the edge off some. As the day goes on and as I move around more, it tends to wane, only to come back in the early hours of the following morning.
In the beginning this happened once a month. Then it was a few days at a time per month. Then a few days every three weeks…fortnight…week. Now its near constant.
I don’t know what it is, but it’s a horrible pain, makes me feel sick to the stomach. It’s not inflammatory arthritis, its in the muscles. But it feels much like the nerve pain I’ve had before.
My brain MRI is normal they tell me, and my nerve conduction studies were inconclusive. Which my neurologist took to mean there is nothing wrong.
But there is something wrong. This is not normal. And its getting worse.
I told my rheumatologist about it and he said he would call my neurologist and organise more nerve conduction studies. I haven’t heard anything about that, so I need to make an appointment. Again, I just haven’t found the time. Another appointment. Another round of tests. I’m exhausted and its overwhelming. This pain is having a major impact on my quality of life though, so I will make that appointment. Er, soon.
I’m having a lot more trouble with my neck – range of motion and pain. My entire spine is severely degenerated, worst in the lumbar where I’ve had L3-S1 fused, but my thoracic and cervical spine are similar, just not as severe. I have mild stenosis and moderate facet joint arthritis at every level.
All of that means pain. I’m seeing a physiotherapist for exercises and some massage every week. That’s helping some, but physio is slow work. My range of motion in my neck continues to deteriorate. Soon I won’t be able to drive a car safely anymore.
Hearing aid / deaf
I am deaf in my left ear. I have lost my hearing aid. So not only can I not talk loud enough to be heard, I can’t hear either.
If I had a social life, this would be a major impediment! Luckily I don’ have a social life, so no big, right?
I do need to get another hearing aid, however. It just never makes it to the top of the list and the GP. You can see why. But one day….
The tinnitus is screamingly loud some days. I can’t hear at all when that happens, even with lip reading. It is mostly left sided, which is lucky.
Doctors are investigating if the bony tumour in my skull is pressing on any nerves causing facial pain and hearing loss. Interesting. I’m going to try for a better-quality hearing aid though, I’d like to be able to hear again.
Scleroderma – psoriasis – cutaneous lymphoma – deep fungal infection
My foot has had this patch of thickened, cracking skin for years. It has been seen by at least 7 docrors now. I had to ask for my GP to take a biopsy, which he has done. Thank the gods.
Originally it was a small patch that cracked and bled sometimes and hurt. It cleared up again though and it wasn’t a big deal. Again, over the last year it has spread a lot. It flares up a lot and now its constantly cracked and bleeding. I have a treatment for psoriasis – enstillar foam – which fixes it. But as soon as I stop using the treatment, it returns. As in two days later. The treatment is expensive, so I would prefer something else. The fact that it is a psoriasis treatment doesn’t prove its psoriasis unfortunately, because this treatment also works for cutaneous lymphoma and many other skin lesions. It contains corticosteroids and vitamin D and these things help a variety of skin conditions.
It looks fungal and most doctors have told me to treat it with an antifungal cream. They ignore the fact that I have tried all the over the counter antifungal treatments, prescription antifungal treatments and three months of oral antifungals. Oral antifungals are hard on the liver, so I had to stop methotrexate to do it. It didn’t clear the infection, so the conclusion is that it isn’t fungal.
I have been asking for biopsies all year. Finally, my new GP agreed, he said “ofcourse, lets take a biopsy”. That was done last week and I’ll get the results today. Hopefully that will tell me something and save time when I finally get to see the dermatologist. I got a referral at the beginning on the year, and my appointment is in November. An eight month wait. Despite it being very painful, cracking and bleeding constantly and being an infection risk for an immunocompromised patient.
Teenagers with acne are getting appointments quicker than me. Why? Acne is easy to treat and lucrative, right? Yes, there’s a good dose of cynicism there. Medicine is a business, but some doctors are more business oriented and less medicine oriented. Patients should be triaged, see the worst patients first. An eight month wait for an open wound is rubbish.
At least having had this biopsy it will save time. The first thing the dermatologist will want is a biopsy and then I would have had to wait two weeks and come back for a review appointment. Now, hopefully, the biopsy results will go straight to her and my appointment in November will skip the “first” appointment and jump straight to reviewing the biopsy results and deciding on treatment. Hopefully.
Single mother of two adult kids, one with a disability, one with high anxiety. Enough said?
When I say “single mother” I mean single. The kids’ father has had very little to do with them in the last ten years, and has played NO part in parenting or decision making. I have had NO support in any way other than financial. I’m grateful he paid his child support without complaint, but parenting on your own, especially kids’ with disabilities and mental illness is hard. Very hard. And it doesn’t’ stop when they turn 18, but the financial support does stop. They still require a lot of support from me, and one of the likely always will. I love them more than life, but its not easy.
COVID-19 has killed my business, so financial stressors are huge. Figuring out how to pay my bills is an ongoing game of moving money around between savings and credit accounts and hoping they’ll somehow manifest into more money. Sadly, it does not work that way. Financial stress is not helping my health. At. All.
Still estranged from my entire family, apart from my kids. They constantly harassed and gaslit me. Not to mention victim blamed. They refuse to believe I am truly sick and disabled, and constantly give stupid advice and think I should try harder. It’s a long story, but life is better without these people in my life.
Still estranged from all my close friends. I have a few acquaintances. People online are the kindest, and most wonderful source of support. People online have much more understanding for all of the above. Healthy people seem to stubbornly refuse to understand, learn or even care.
It’s complicated. Final thought – THIS is why its so terrible that my regular GP just up and left, without letting me know, without giving me notice.
Finding a new GP is not trivial for a very complex patient, such as myself. Reading through ALL of that above, that will take many months for my new GP to get a handle on. Add to that I require regular opioid pain medication to relieve some of my pain, and very few GPs want to take me on.
I’m just lucky I’m a very prepared person and I had a back up GP in my pocket. But that’s luck too. I’d seen him before when I couldn’t get an appointment with my regular GP. He seemed fantastic. He listened, he was interested in my laundry list of problems, he was happy to work through them one at a time, when we hit rare diagnoses, he openly said “I’ve never heard of that” and most importantly, “can you explain a bit about it?” And he said he would read up on it. And the next appointment showed that he DID read up on it. One in a million GP.. Very lucky I found him.
Please, please new GP, please don’t leave!
And I think that’s it. Current summary. Its enough.