(Why yes, that title is a Rent reference. I ❤ the show and the movie)
I have medical testing coming up that I am not looking forward to – some because I think it will be unpleasant, some because there are no good answers.
The one I expect to be painful is an ultrasound of my hands. I remember how firmly they press on say your abdomen for ultrasound imaging; that kind of pressure on my hands would be AGONY. I suppose there aren’t really good answers on this test, now that I think about it. Either they will find inflammation that backs up the theory that I have something like rheumatoid arthritis (RA), or they’ll decide there isn’t inflammation there and we don’t know why my hands hurt nor why they look swollen.
I’m supposed to have an MRI of my brain done, because my former headache specialist worried that I might have pockets of fluid building up in my brain, due to the kind fo headaches I get on a near-daily basis now. Again, there aren’t really any good answers – if nothing shows, then we have to keep investigating to see what is causing the headaches. If it does show, that means brain surgery. And oh yeah, having a MRI is no walk in the park. This one will be with and without contrast, so they will fix my head in a specialized vice that partially blocks my vision, put me head-first into a long narrow tube I barely fit in, and then there’s all the noise and the vibration (which hurts a lot!). As if that wasn’t bad enough, they’ll pull me about 2/3 of the way out so they can put in an IV and inject in the contrast material, then put me back in the tube. I’m mildly claustrophobic, and both the head vice thing and taking me out and putting me back in considerably aggrivate the way I feel about it.
Then there’s a rotational CT scan of my neck and where the head meets the neck. I have symptoms that could match up to craniocervical instability (CCI), which is vastly more likely in people who have connective tissue disorders like mine. If I don’t have CCI, then we have a question about what is causing a lot of symptoms that include pinched nerve symptoms in both my arms. If I do have it…whoa. Surgery, but that surgery might take care of a slew of issues that have affected me over the last 4 years. However, I won’t be able to get the botox injections into my neck that they think would stop my migraines because my head would already be unstable enough on my neck that they would be worried about destabilizing it more. The test itself isn’t too onerous, at least – I turn my head all the way to one side and go through a mechanical doughnut rather quickly, then turn my head to the other side and go through it again.
I also need an MRI of my mid-back to see if the maybe-RA is attacking my spine or if the pain is coming from something else. This is another relatively painless test, but the results are something I’m not sure I want to know. If it is the maybe-RA, I suppose they’ll treat more aggressively. If it isn’t…well. We have to figure out what’s causing new back pain, how and why, because this back pain is neither normal nor tolerable for me.
I don’t really know what I want at this point. I am tired of feeling like crap, so I would like to feel less like crap, but I don’t know what test results or medications will offer that solution. In the meanwhile, I guess I keep on keepin’ on. It starts to feel a bit surreal sometimes, and other times it feels like I keep going out of habit or lack of palatable alternatives.
Brilliant Mind Broken Body 
As I read your concerns about and fears of the upcoming tests your doctors have ordered, I found myself thinking, “Yes, this will be really unpleasant but if they can pinpoint a cause for her pain, then they’ll have been worth every second.”
The uncertainty we’re faced with when suffering from a chronic condition is frustrating and demoralizing. I absolutely do understand your ambivalence, Kali. I stopped taking RA meds for close to 10 years because of that frustration; I was convinced that there was nothing doctors could do for me. Since the only medications I’d taken up to that point that had any effect on my pain were narcotic-based, and my doctors generally resisted prescribing those for fear of possible dependence on my part, I gave up in disgust. When I flared, I toughed it out, taking Aleve and ibuprofen.
The thing was, during those years new medications were created and/or discovered. Had I not been so stubborn, I might have had access to them and the progress of my RA slowed. I might not have had to have surgery on my wrist, as the DMARDs and new biologics might have prevented the rheimatoid pannus that formed within and over the joints, threatening the function of my right hand.
I guess what I’m saying is that if you can endure these tests and procedures, the outcome might prevent more suffering in your future. I hope you’ll go ahead.
Sending hugs your way, Kali.
Don’t worry, I will go through with the tests. I just…UGH the idea of going through with them is awful, and getting the results isn’t much better. I’m kind of throwing a grown-up tantrum over the whole thing, because while I know it’s necessary, I rather emphatically do not want to go through with all of this.
And I’ll be honest, a big part of it is a fear of the results. What are they going to find out? Am I going to need brain surgery, or surgery where my spine meets my skull? It’s frightening knowing where these test resuls may lead (though not frightening enough to stop me going through with it – as you said, I need to know what’s going on and more importantly my doctors need to know what’s going on so that we can manage conditions instead of just letting them happen).
Keeping you in my prayers that these tests will give you and your doc the answers to find a solution. And lots of positive thoughts that you will be able to get through these tests. I know the fear of some of them but I also know that not knowing could be more dangerous for you. Try to stay strong and hopefully this part of the journey will lead you to a new road…one that starts the process of treatment.
The tests, the results, the outcome, the fed up ness, the fear. I understand that. Blogs are good for getting the ughh out of ones head. It seems to me, tests and invasive procedures always come in bursts and often feel like its a dream where one is stuck on a ride and can’t get off. Some of the frustration is just wanting to be well. I just wish you luck and am thinking of you.