A little while back I was plagued with a variety of symptoms that were far from life altering or even severe, but damn were they making me uncomfortable, cranky and borderline nonfunctional. I had a constant headache that would not go away, but it was not a migraine (though at times bordered on the same severity), a shunt headache, or even a sinus/pressure headache. It was simply an angry buzz. My ears were always ringing, always whooshing, my hands hurt from what felt like extremely severe arthritis, even though I don’t have arthritis, the joint pain so bad that it was difficult to sleep and would often wake me up. I also had general aches and other problems. Oh, and I couldn’t sleep because of the aches and joint pain, so after three weeks of less than six hours of sleep on average each night, I was not the nicest, most patient person. All right, I was downright snappy at times.
It took me awhile to figure out what was going on. I mean I had an inkling, okay I did know what was going on, but it was a newer problem that I was still getting used to. I have so many things – really it’s like an extensive medical resume but most things I have had decades, or at the very least years, to figure out. I know my body. I know when something is my heart. I know when it’s my kidneys. I know when it’s my shunt, or my ears (deaf here), I know when I’m simply rundown even if my body is freaking out because it doesn’t like the extra strain. I know when it’s my blood pressure. I know when it’s my stomach. I know when it’s my bones. I always know.
But in the beginning of 2014, I was diagnosed with a bone marrow disorder, and that I was still getting used to. I had figured out what would happen if I needed another blood treatment (I call them blood treatments because while a lot of it is a basic phlebotomy, I have to get things through an IV as well, and it’s not at all the same as giving blood, way more prep, much more involved, and a whole day thing) to treat this disorder.
My body responded quickly to treatment, which I had to have every other week in the beginning. And soon I only needed it every six weeks, and then every ten. I was able to stay ahead of it to the point where it never became a problem, so I was unfamiliar with what would happen, and how I would feel if there was one.
And then the cancer center where I go for my treatments had some management/staffing issues. They got new management, which caused a mass exodus of nurses and support staff. In fact, they were only left with two. And suddenly when I needed treatment, I was waitlisted six weeks out, because they did not understand how my condition affected my other issues, and many people with this condition have nothing else going on, and in that case it’s not all that serious. But for someone with several “special” organs, history of chemo, history of stroke, and several other blood mutations and conditions, it actually is a big deal. A very big deal.
The first time I had to wait, I felt crappy in the general way. And I had my treatment and felt instantly better. It was so general and also so moderate (if it’s mild, it does not even register with me) that I didn’t do a body inventory of how I was feeling. But then five weeks later, I started feeling crappy again. And after a week of general crappiness, I did take stock and looked at exactly how I was feeling. The symptoms I have already listed were all present, but I could not figure out why. But I wasn’t looking for new problems, so I looked at what I already had. And I discovered that what I was feeling, down to the severe hand pain was textbook for my bone marrow disorder. I used to be able to go ten weeks between treatments, but obviously the delay had pushed my body out of its rhythm and I needed another one in less than half the time.
Getting in was complicated, and took two weeks. They wanted to go four, but I pushed and pushed and my husband harassed them on my behalf. It was not my doctor who is great and said, “This needs to happen,” or the nurses, it was the idiotic new bureaucrats who had no idea how to run a medical facility, which is why so many people jumped ship. They had the center at under 40% occupancy because they were short staffed and wanted to be prepared for emergency cases. Trying to explain why my case was a priority to people with no medical knowledge was frustrating. I get having a buffer and an ideal patient/nurse ratio, but to uphold the ideal over patient care and needs – yeah, not okay. And they heard me loud and clear.
I had my treatment, and felt only slightly better this time, but still enough to notice a difference. And then two weeks later, I felt crappy again. I told my husband in the car, “I swear I would think it’s my blood, but I just had a treatment, so that can’t be it. Maybe I’m just tired or something.” God, how I want to slap myself. Doubt is no one’s friend, and I knew what was up but explained it away, which I am good at doing. Perhaps this is why my body hates me so.
By the next week however, symptoms were so bad that we contacted my doctor and I was transferred to another center to have a blood treatment. And I did, and again felt somewhat better and three weeks later felt crappy again. But this time my numbers were okay. They weren’t great, but they also didn’t warrant a blood treatment. So when I scheduled my appointment and met with my doctor he told me I didn’t need one, but I told him differently. I asked him what would happen if I had a treatment anyway. I told him my symptoms and how I theorized that my body was all screwed up and off track because of the treatment delays at the other center. I went from never having symptoms and only needing treatments every ten weeks, to needing them every five weeks and getting symptoms after only two weeks. I felt I needed an extra treatment, even half of one to help bump my numbers down far enough to get back to my body’s previous sync. It was aggressive for a typically nonaggressive disorder, but I was tired of feeling so crappy and not being able to sleep. And also, my hands were pulsating with such intense pain, I was so over it.
I really like my doctor, all of my doctors actually, the ones I don’t like don’t stay on as my doctors (usually because they have an ego issue and act like they know better than me, the real expert, or because I know more about my condition than they do, and it’s their medical specialty, which makes me question their competence). My doctor listened, as I knew he would. I wasn’t giving orders, I was asking him to talk with me, rather than at me. If having a treatment would adversely affect me, I would seek out other ways to control the symptoms and ask how to get my body back on track. But if it didn’t, and I simply did not need one, I was asking him to trust me and let me have it anyway. I mean the treatments are not fun and sometimes downright misery and you don’t get pain meds or anything after, so why would anyone volunteer to have them done? They wouldn’t.
And my doctor did listen and he let me have the treatment. Six weeks later, it was much of the same, only more so. My symptoms came back, but this time not as quickly, and not as severe. I had only had them for ten days and they were still pretty chill. But my numbers were excellent. It made no sense to do anything. Still, I asked if we could do a partial treatment because I was symptomatic, but they had taken longer to come back and were milder this time. I felt I was so close to getting my body back to where it needed to be. But it needed one final push.
My doctor was on board, and talked with the nurses to discuss just what they could do and what they couldn’t. I think he was skeptical and he did warn me I would feel particularly run down after and probably see some excess bleeding and bruising, but I was okay with that. (And he was not joking, five spontaneous bloody noses that were the biggest gushers I can remember having in MY LIFE.) But I did it, and afterward… now I’m back on schedule, mostly. I do treatments every eight weeks, start feeling symptoms after six or seven. Obviously, this is a definite improvement. And I feel nearly back to normal for me. Which is all I ever wanted.
It’s funny but with my other problems, I always know. My heart has a special kind of pain or I keep blacking out. My shunt is such intense pain that within minutes it is hard to stand, move or speak. The pressure on my brain builds and eventually overloads my central nervous system, putting me in a state of shock so I cannot move or speak. My body is not exactly subtle…
Even in these cases though, sometimes there is pushback. One time my shunt was broken, while my eyes were fully dilated, and I had issues with speech and movement, my surgeon’s associate refused to see me because I refused a CT scan, which is dangerous for the minority of shunt patients I fall into – less than 1%. But he didn’t believe me. When my own surgeon saw me the next day he knew right away my shunt was broken, and then his resident wanted to see what a CT scan looked like for someone with my condition (Slit Ventricle Syndrome) and he tried to bring it up to me as if it were my surgeon’s idea. I immediately called his bluff, saying that if my surgeon was suddenly unsure my shunt was broken I did not need to be there and made efforts to get up. Saying I refused to have surgery. I turned to a second resident who was there, and told her that I was not having surgery since the first resident said my surgeon was no longer sure. The look on his face told me he got it – don’t fuck with patients just because. I ordered him out, and said he was not even to observe the surgery. My nurse, who had tried but failed to conceal his laughter during the confrontation, told me after, “Good job. Sometimes you need to remind them who they’re working for.”
And I had been right too. My surgeon never made the request, because it didn’t make medical sense and caused me extreme discomfort. And he has since put a note in my file warning against any attempts at CT scans, stating directly, “A CT scan has no medical benefit in diagnosing the patient, sometimes the opposite, if he is under the care of someone unfamiliar to his case. And it is clear the patient does not want one.”
I never play games when it’s my shunt or heart – this is the life and death stuff. But I can be quite stubborn when it comes to taking care of anything that isn’t life or death, or listening to my body and what it needs. But now I get it. It might have taken me awhile, but I have learned to listen when my body tells me something. Big or small, it’s all connected, and it all matters.
And the body always knows… you just have to listen to it.