Waiting, waiting, waiting…
I was going to write “unidentified chronic illness” rather than “untreated” but I stopped myself, in the spirit of being an obedient and submissive patient. For years I have struggled with feeling like I hate doctors and mistrust them. I remember it starting with my family doctor when I was a child. I would visit him constantly with severe sinus infections and every time I would walk out with what he called “the pink stuff”. Liquid Amoxicillin. Bright pink and absolutely delicious. Tasted like strawberry pudding with crisp overtones of antibiotic resistance. Mmmmm.
Eventually I found myself frustrated with the idea that my only option seemed to be chronic sinus inflammation and constant repeat doses of antibiotics… this was just my life. Though I was just a kid, it didn’t seem like “health care” to me at all. But what did I know? And still, almost 20 years later, what do I even know now?
I couldn’t have been more than 13 when my mother and I approached the doctor about my low energy levels, needing to sleep a lot, feeling tired all the time and experiencing depression. He checked my thyroid hormone levels and they came back abnormal in the hypothyroidism range. He explained that imbalanced thyroid hormones can cause all of these symptoms! After growing up watching my mother struggle with all of these things and obesity on top of that… I felt so lucky to get my diagnosis at 13. I was going to be happier! I was going to feel like doing things! I wasn’t going to need 12 hours of sleep to feel rested anymore and I wasn’t going to fall asleep in school!
But that never happened. I know now through my own research that it’s supposed to be a matter of dosage adjustments and blood work monitoring in order to tailor each persons Levothyroxine (or Synthroid – synthetic thyroid hormone) treatment. And the doctor tried. We went back for my follow-ups and I explained that not a single symptom had changed. I remember wondering if this meant we would look at other sources for my problems, but he upped my dosage. “Okay”, I thought, “this will be it”. Again, it wasn’t. He kept upping my dosage and my blood work was reading in the range for a healthy non-hypo person. I was still spending my life feeling like shit.
My mother always made sure I took my Synthroid. But at 15 when I moved in with my father who I would affectionately call an insane, militant herbal medicine supporter, I went off of my medication saying “It doesn’t change anything for me so there’s no reason to take it”. I suppose I still feel the same way. My symptoms never changed and I am still living with all of the problems that I sought treatment for in the first place along with discovering even more things that I’d always thought were “just the way things were”.
All of this now compounded by the fact that I flinch whenever I think of Synthroid because every time I try to seek treatment for these issues, the doctors put me back on it telling me that the problem is absolutely my thyroid and Synthroid is absolutely the solution. In my adult years I’ve now had two experiences where instead of having no reaction to Synthroid, I actually reacted really badly to the point where my symptoms changed to a totally different kind of unlivable. I’m pretty much terrified of being asked to go back on it again. The symptoms I live with are awful and debilitating some days and the thought of taking something that might make them worse is too much to bear.
Once again, in the spirit of being a good patient I present the story of my hypothyroidism because it’s what science is telling me is the cause of my problems. I feel it would be dishonest to write an entry, as a layman, about my own ideas for a diagnosis while failing to mention what actual doctors have told me. But I can’t lie and say that I’m very hopeful or trusting at this point. I am trying my best to make sure that I follow all directions. I don’t stop any medication without calling and discussing with a doctor first. At my last visit with my PCP he was ready to resign to “I can monitor your thyroid but if you can’t take the medication then there’s nothing else I can do”, but I told him I was still concerned with leaving it untreated (as I know that there are other prescription treatments available, even if they are not commonly used). Thankfully with that said, he offered me a referral to an endocrinologist who I will see in October.
Over the years my symptoms have come and gone with what seems like no rhyme or reason. Sometimes they will disappear for what seems like weeks or months or maybe there will only be a few bad days sprinkled in between. During my worst times, symptoms have lasted for months with a few good days in between. Currently, I feel like total fucking shit. My two most debilitating symptoms are fatigue and body aches, which my legs seem to bear the brunt of. During these times I also get very dizzy and have to brace myself pretty much every time I stand up. Sometimes I forget that I’m going to get dizzy and attempt to move at a normal pace which leaves me with the sudden feeling that I’m going to collapse or pass out. I’m 28 years old and literally just getting up out of my seat is cause for concern some days. It disgusts me. I feel disgusted with myself.
When I’m feeling well I like staying busy. When I feel good my body wants to move and I like working out! Fitness has always been an interest of mine even when my body doesn’t want to cooperate. I like leaving the house and going on outings. I like taking my kids to do activities, I like taking the baby to the playground. Honestly when I’m feeling well (and maybe it’s just the contrast of knowing what it’s like to feel so awful) I even like housecleaning and organizing. It’s rewarding and fulfilling to feel like a useful human being. I feel good about myself when I’m meeting the needs of the people around me. And I feel like the scum of the earth when I feel like I’m failing them.
So what the fuck is this shit? Why does it come and go? If this was my thyroid, wouldn’t the symptoms have stopped during the times when my thyroid was considered by my doctor to be “normal”? Though these are the same symptoms that I’ve had for as long as I can remember, the consequences of them seem to be hitting me harder than ever. What started out as “some day we will solve this problem” is now turning in to “if I can’t be fixed, I’m not sure if I can imagine this being a life worth living”.
Of course since this is a blog centered around mental health issues, I would have to address the possibility that this is psychological (though the throbbing pain in my propped up legs feels very fucking real right now). There was a time when I wouldn’t have considered the possibility, but at this point of suffering, who cares as long as it’s treatable – right? Interestingly enough… every single SSRI that I’ve tried has actually intensified my symptoms OR has brought them back when they were previously in remission! Talk about depressing.
We still have medication options left but we can only do so much at what feels like a snails pace when it comes to attempting to treat my various mental health symptoms. I am currently trying a medication for my ADHD diagnosis because at 28 I am finally going to start my associates degree and I don’t want my inability to focus to hinder my progress in any way. You know, you’d think that being on a stimulant would have the added affect of better energy and a general not-shit feeling… but I still feel like I’m barely staying afloat. There isn’t enough Adderall in the world to make me feel good at this point and my ultimate goal is to find the root of the problem, not cover it up.
I like to try to end a piece of writing in a way that makes it feel whole or complete. But I’m hurting and I’m probably going to use the rest of my toddler’s nap time to compulsively research ailments while living in fear that everything I touch or put into my body is the thing that’s potentially causing me to feel this way. No happy ending today, no closure, just more searching.
basket full of meds 