I haven’t been healthy in many years. When my son was five, I became very ill. What had been fatigue, joint pain, pelvic pain, nausea, and lots of non-specific bits and pieces suddenly declared itself.
One morning I woke up with aching hands. I mean aching. So much so that I could barely make the kids breakfast, luckily they were old enough by then to do most of it themselves. I didn’t have to drive them to school , also lucky. As the day went on, the pain receded, only to return in the evening.
And I never again woke without pain. Never again.
The pain in my hands spread to my feet, knees, shoulders, hips, lumber spine, cervical spine, elbows, jaw, ribs…it was everywhere. Some days it was only in a few joints, other days every joint was on fire. It took over a year to be diagnosed, and over a year before I started a treatment that helped. Prednisone. Nothing else really helped much. The years dragged on…endless treatments to work through. Some helped a little, some helped a little bit more. But nothing ever took the pain to below a five.
And then I started gathering diagnoses at a rate of knots.
More autoimmune diseases. I’ve had Hashimoto’s thyroiditis for many years, not a big deal. But then I developed daily diarreah, and probable IBD. My liver was inflammed and autoimmune hepatitis was suspected. Adrenal insufficiency, possible Addison’s Disease, uveitis, peripheral neuropathy, lesions in my brain that are either small strokes or MS like demyelination. No lesions in my spinal cord, so no MS diagnosis. Seemed like every week I was seeing a new “ologist”, and having a new test or scan. Life became all about my health, or lack of health.
My friend, lets call her “Karen”, accused me of ‘living my disease’ or ‘becoming my disease’. Well, when everything you do, every minute of every day, depends on how much pain you’re in and which kind of pain, and you average three doctors appointments a week, and those are NECESSARY doctors appointments, to either keep your pain levels bearable or just plain to keep you alive, its pretty hard not to have your life revolve around your diseases!
It’s a very cruel and heartless thing to say to someone who’s really, really sick. It implies I have Munchaussen’s and enjoy seeing doctors and being sick. I don’t speak to the person who said that to me anymore, I hope she finds out what it means to need that much medical help and see how well she manages to “not live her disease”.
I was also diagnosed with cardiac microvascular disease and microvascular angina. Small vessel disease of the brain, which increases my risk of dementia radically. More scans, chest CT, brain MRI, liver MRI…I got so tired of it. That’s all my life became. Doctor’s visits – I was regularly seeing a rheumatologist, a neurologist, and ophthalmologist, a gastroenterologist, and a psychologist. Who wouldn’t need a psychologist?
Then the allergic disease started. Eosinophilc esophatigis which ultimately means I can no longer eat solid food. Cholinergic urticaria, essential I’m allergic to my own sweat. In the summer or if I exercise, I break out in great big hives. I had two bouts of exercise anaphalaxis. Angiodema. Years ago I became anaphalactic to seafood, but now I was gathering allergies to pretty much everything. I had to go on a strict elimination diet…no meat, seafood, wheat, daily, corn, soy, nuts or tree nuts. (Karen said she understood how hard it was, because SHE herself was allergic to chilli. Yep, that’s exactly the same thing).
I started living on mostly veg puree and slow cooked beef or chicken. I now eat some fruits, some mostly pureed veg and chicken and beef. I can’t eat out, ever. I barely eat at all. Any more than a few mouthfuls of anything and I get severe abdominal pain, and immediate diarreah.
Food loses its appeal when that’s the result.
I added an immunologist to my list of professionals.
About then I was diagnosed with Adrenal Insufficiency, thought to be due to my years of prednisone use. My immunologist also discovered my extremely high bone density – a one in three million result – which meant I have a rare bone disease of unknown etiology, something similar to osteopetrosis, but more severe that the usual adult version but less severe than the fatal childhood version.
My immunologist sent me to the country’s best immunologist, my very own ‘Dr House’ who started trying to figure out WHAT disease or diagnosis could tie together all of these health conditions. He found eosinophils where they shouldn’t be and started trying to get me off prednisone because eosinophils are very responsive to prednisone, meaning they are suppressed by prednisone. He has never seen a case of eosinophilic esophagitis that is not cured by prednisone. Cured. I have had endoscopic biopsies showing definite eosinophilic esophagitis while on 12mg of prednisone.
This is impossible, in his experience.
As is getting of prednisone, due to the aforementioned adrenal insufficiency. But he did find some anomalous blood work and scans that made him sit me down and tell me he is concerned for a rare blood cancer. He wouldn’t be drawn further, but it was clear he wanted to scare me into trying harder to get off prednisone, because he can’t make the diagnosis while I’m on prednisone.
Somewhere in there I lost the hearing in my left ear, and I’ve lost a lot of vision in both eyes.
Prior to that, my pelvic pain and bleeding became unbearable. Infact, it had been for many years, I just never had time to deal with it, it never made it to the top of my list of health problems. So I saw a gynaecologist and was diagnosed with adenomyosis and endometriosis. I had several ovarian cysts, due to Polycystic Ovarian Syndrome, but then I had severe pain and they discovered a complex solid walled cyst that needed attention. It was the kind of cyst that could be ovarian cancer, but probably wasn’t. I’d need it biopsied, however. Then I had a pap smear that found pre-cancerous cells, so I had a totally hysterectomy and oophorectomy.
Because my surgeon didn’t take a proper history and didn’t understand the complexity of my health problems, and that there was no way I was healthy enough to undergo major surgery at that time, she screwed up the surgery and ignored my post-op care to the extent that she nearly killed me.
To cut a long story short, I spent five days in hospital, bleeding to death, in agony, being ignored. I called my best friend, and she did her very best to ensure I died. I called my sister and she jail-broke me from the hospital and took me to the ER across the road. They discovered my haemoglobin was 68 and I had lost half my blood. The doctors and nurses at the private hospital had ignored my complaints and treated me as a hypochondriac. And almost killed me.
Enter my PTSD diagnosis.
What followed was a stroke, rehab, and not one of my friends came to visit me. Two weeks later, one of my friends came by. But she didn’t come back again. I was stuck in a recliner, with only two terrified teenage kids to help. It was torture, and I can never trust anyone, ever again. My friends, my family, my doctors, the nurses, the hospital, everyone abandoned me. No one cared.
THAT took a long time to come back from. Being left to die, alone, with not a single person in the world caring at all, was devastating. And changed me forever. It made me regret that I spent most of my life helping others. Not one of those people were there for me when I needed someone, anyone. Not. One.
Some even used the opportunity to kick me when I was down.
I couldn’t reach out to my old school friends, I had nothing to give them. I couldn’t ask for their help, when I had nothing to give them. Some of them were unspeakably kind, anyway. Kind people are rare. But they’re out there.
Then I added an endocrinologist, who discovered my pituitary tumour. After another year, my endocrinologist has realised the pituitary tumour is causing the adrenal insufficiency and I’ll always have to take corticosteroid replacement. She also discovered, that despite having had both my ovaries removed, I am NOT menopausal. So somehow, my body is still making estrogen at pre-menopausal levels. This is, of course, impossible.
Oh, I almost forgot. The problems with my spine. Because of my extreme bone density, I have early onset osteoarthritis, along with the rheumatoid arthritis. People are always quick to point out that RA is worse than OA, but let me tell you, OA hurts a LOT. Just as much as RA.
My spine is severely degenerated, I have herniated discs at the lower three levels, I have severe facet joint arthritis, spinal stenosis, spondylolisthesis, and I have nerve root compression at L5/S1 on the left side, causing drop foot and partial paralysis down the outside of my left leg. I get pain down through my buttocks, down past my knee and into my foot. This pain is excruciating and its constant. Not much helps it. It is far, far worse than anything RA has ever dished up to me. It is the last thing I am aware of at night, and I am woken by that pain every single morning…somewhere between 2am and 7am. The pain in my spine is also excruciating.
This is the pain that makes me want to give up. And feel no pain anymore.
And you know what? Everyone things ‘back pain…haha, everyone has that’.
NOT like this. My back pain is disabling. The nerves on my right side are becoming compressed as well, and I have numbness and paralysis down the right side too, mostly around my knee.
When it first happened, I had lost bladder control. I went to the ER, and they ignored me. I saw a neurosurgeon and he recommended surgery. But because of my PTSD, I couldn’t have the surgery. He also said I will need a four to five level fusion at some point, a major surgery, or become permanently paralysed, and require a wheelchair.
He said I would come back to him one day, begging him to operate. He didn’t’ say it unkindly, infact just the opposite. He has a lot of empathy, he’d never seen someone as young as me with such a degenerated spine. I have an appointment with him in January.
So here I am. Still averaging three doctors visits a week. With ALL of that to deal with.
That’s the last ten years, but most of it happened within the last three years. The allergic diagnoses, the rare bone disease, the neurological damage and spinal disease and everything else has snowballed.
From having one nasty disease, RA, I now have multiple painful diseases. RA was my first serious diagnosis, and a lot of what’s wrong with me is related to RA, or the medications I have taken to treat it. But a lot of it is NOT. And RA is not the most painful disease, I have, nor is it the most life threatening. I always said, right from the beginning, there are worse diseases than RA. Not a popular view, but it helped me stay positive. I knew it could be worse. I didn’t need the lesson.
Now I’ve been diagnosed with a bunch of things that are worse than RA. And with a lymphoma diagnosis threatening on the horizon, a rare bone disease of unknown prognosis, the inability to eat solid food, partial paralysis and total paralysis down the line, and severe, excruciating pain in my spine and down my legs every single minute of my life, I have a very different perspective than most RA patients.
And leaves me very, very alone.
It’s hard to find someone with this many health problems who isn’t dead.
Its hard to find someone who gets my sense of humour.
Its hard to find someone who wants to listen, support, understand, help. That’s who I was, but I’m not that person anymore. People took too much and hurt me too badly.
One or two people have reached out, but I can’t trust. Because I was betrayed by everyone, friends, family. I can’t rely on anyone, ever.
And people who have straight up RA, don’t understand all my other issues. They just don’t. And the people who befriended me, only want to talk about THEIR RA. They aren’t interested in my RA, my other pain, or me. They just want the old me, the one who would listen endlessly to their problems. And help them.
Why did people betray me so easily?
I don’t look sick. I look normal. Its easier to believe that I have a psychological problem than I have serious physical disease.
I don’t look sick. It’s easy to walk away if you can tell yourself that person doesn’t need you that badly. They aren’t that sick. Look, they don’t look sick at all.
I think we really dont need to second guess others or be the illness police. we need to take people at their own word.