I get it.
I can understand why you may never go to a doctor’s in the first place.
But I mostly understand why you may have stopped. Why after a few too many visits in a row of feeling absolutely neglected, unseen, and unhelped with no positive direction leading you towards a better health outcome, why you stopped seeking care.
Today I sat hopeful that I could get some answers.
I do not understand this disease that is arthritis, and I really have no idea how to gauge the pain or impact on my life.
I know that the pain is there. I find myself massaging my elbow as I walk down the hall. Mindlessly massaging my feet as I watch tv. Stretching my leg a bit more often while sitting, unsure if I’ve been sitting wrong or if maybe my ankle is slightly swollen.
It doesn’t hurt all that bad. It doesn’t keep me awake.
But I know that the various gels and creams I have will help reduce the pain, yet I don’t find myself getting up to go apply them very often.
This is where it gets complicated by my much more severe case of migraine. I already have a very detailed pain scale that takes into account the pain, my symptoms, and my functionality.
And for the last few years when I give a pain rating, it is in reference to that.
The slight dull ache making its way through my joints does not fit on this chart anywhere.
It has been raining for over a week, the correlating increase in joint pain came a few days before the rain. And it’s been hard, and I have questions.
Will I always be in a little more pain during the rainy season? I mean, it is April, that is what it does in April. It rains. Is this something I should come to expect even when the disease seems well managed at other times?
Is it alone cause for concern or something that warrants making medication adjustments?
Is there an honest way for me to evaluate this pain? Because sure, it may sound like if I’m not bothered enough to go put a gel on it, it couldn’t be that bad… but my relationship to effective treatment is complicated. Most treatments don’t touch my migraines and I oftentimes forget about smaller ones that can help – like an ice pack. Surely that same thought process occurs with the nuisance that is arthritis.
So how do I know?
That’s what I came to ask today.
It’s totally frowned upon to build a pain profile and description of symptoms from various anecdotal sources on the internet and I have access to a doctor. So I came to him with the request of better understanding this disease. Hoping to better understand what is cause for concern, or what is simply part of having this disease.
I got none of that.
He told me to go see a Rheumatologist for my questions, but then repeated the same sentiment that he can’t refer me anywhere because there are no Rheumatologists that stay at the practice long enough to be of any assistance.
I again told him I am not interested in working with a specialist as I don’t want the drugs they prescribe. That I am happy to continue experimenting with the LDN and see if we can find a sweet spot.
To him, that was fine. He looked at me and said for where I’m at, I don’t have to take those drugs but by the time I’m his age I will be in incredible amounts of pain.
But taking those drugs is a trade off that reduces my quality of life so dramatically I can’t even fathom considering them again.
If I’m already disabled, adding in drugs that cause other conditions to flare, my hair to fall out, and give me potentially life long side effects like high blood pressure and hypertension, I think that puts my quality of life close to death itself. And that doesn’t even take into account the risks of organ damage that must be monitored almost monthly…
I gave up on asking him questions about this disease.
I asked to increase my LDN to 4.5 mg. He agreed.
We had some progress with this conversation. I haven’t noticed any additional sharp shooting pains as I did with the onset last spring and again in my foot this past fall, only the dull aches. Perhaps the LDN is having an effect. So we can hope for more progress.
I also requested physical therapy so I can learn exercises that will be useful for my joints and reducing inflammation. Maybe it will help, maybe I’ll be able to pick the physical therapists brain a bit on this condition.
I don’t know if I will see this doctor again.
I do not really know if I want to be a part of this health system at all.
Again today my blood pressure was very high. 154/89 to be precise.
This has been going on for months and began as a side effect of the immunosuppressive medication I had been on. That drug is now out of my system as far as I can tell… you know my hair has finally stopped falling out.
My regular doctor told me he didn’t want to see me until July.
That I should just continue taking my heart medication – the one that is mostly addressing my heartrate, not blood pressure, and we shall see if it eventually helps the blood pressure.
I have a dull ache in my chest.
It feels more in line with my breastbone and likely could be the arthritis as well, but it is there.
My doctor was firm in saying he really didn’t think the blood pressure was serious because all instances of recording it were during stressful events when I was in office. I’ve taken it at home and it is still high, not as high, but I haven’t a normal reading in months.
Again, the internet has a lot of shit out there but really just says high blood pressure can lead to other more serious problems.
No one is telling me how quickly that can happen.
Just as no one told me how quickly the drugs I was put on could do irreversible damage to my body.
So how many months, or how many years of abnormally high blood pressure can I last before something else is weakened?
More practically, how long do I have to wait until someone cares?
My nurse today took a second reading and since the blood pressure dropped a small amount, he opted not to notify my PCP and said I was good to leave.
I however, felt differently and walked next door to ask my Primary care doctor’s nurse just how concerned I should be and if it was safe to wait until July for this follow up.
I will see my doctor later this week, my father has advised I see a cardiologist if that appointment doesn’t go anywhere.
I looked the nurse in the eye and asked her if this would kill me.
I don’t think those kinds of questions get asked all that often, but for the love of god every single physician has completely overlooked what is a leading risk factor for other heart disease and stroke.
I do not care that I am young because as we’ve already established I am not otherwise healthy.
I have a cannibal that lives inside me that likes to gnaw on my bones, my body is a bloody horror movie.
And I need my doctor’s to do something.
But as I watch them sit by and let me leave time and time again, all I know is that I understand why any one of us may decide that we’ve had enough and might never come back.
Because if no one even comments on the “health risk” notation in my chart next to blood pressure, does it really matter if it goes untreated because they don’t treat it or because I stop going to the doctor?
If my arthritis gets worse because I deem the drugs something I don’t want in my body, does it really matter if its untreated because those drugs are a death sentence or because I stop going to the doctor?
If my migraine meds only ever work 30% of the time and one of the two regular meds I reach for can be acquired over the counter, does it matter if I stop going to the doctor because they have no way to treat me?
My pain doc today said he wants to see me back in 11 months.
He doesn’t sound like he wants to toy around with dosage of LDN if the 4.5 mg isn’t quite right. He snarked that he’d probably see me sooner, as if he could already anticipate the increased dose wouldn’t make a difference.
But 11 months? To me, that sounds like I’m simply going to go untreated. This doctor appears done with my case.
I just want to scream.
Let out a violent yell for anyone to pay attention. For anyone to actually care if I live or if I die. For anyone to see value in improving my quality of life.
I will force them to listen for a bit longer, I really don’t need my heart going out on me.
But I can see how quickly I will slip through the cracks beyond that.
How I too will fall in line with those who simply don’t bother to seek care. Because it doesn’t seem like there is much care to offer unless I find myself on my deathbed.