I've posted a couple of times previously alluding to some health struggles I've personally been facing. For the last couple of months, I've not been feeling well. I have periods of time where I am extremely short of breath, dizzy, and my heart rate becomes pretty elevated (in the 140's). I've also been so fatigued that it sometime feels like I'm swimming through Jello. I've also had some significant GI problems for the past 18 months-2years that initially got better with a gluten free diet in June 2017. Symptoms have slowly returned and remain intermittent. And either in addition to that, or perhaps caused by it, I've lost over 35lb in the past year and a half. Sounds great, right? Weight loss you don't have to try for? Except I weigh less than I did in high school, my hair feels like it's thinning in the front, and there is no way I'm maintaining my nutrition with this kind of weight loss. I was never overweight to begin with. I now weigh 110lb at 5'3". Not too thin, my BMI is still normal. But I've lost my curves and my clothes are hanging on me. Well meaning people keep exclaiming over my weight loss, asking if I'm okay, tell me to eat a cheeseburger. I'm 100% not offended, but sometimes it makes me feel awkward and I'd love to gain back a good 15lb to feel healthier!
I saw a GI doctor and am scheduled for an upper GI scope and a colonoscopy next month. She was almost apologetic for needing to do a colonoscopy, but said she really has to because of the unintended weight loss. I was like, "Yes! Please! Lets do it now! (kidding!)" But seriously, I'm all about doing something to find out what's making me so sick. She's going to biopsy for celiac, EOE, look for indications of Crohn's or ulcerative colitis. Obviously rule out terrifying things that can cause unintended weight loss.
I also saw a cardiologist. He ordered an echo, a holter monitor, and a tilt table test. Results? I have POTS. Postural Orthostatic Tachycardia Syndrome. Basically, when I stand up, my heart rate shoots up too quickly for my body to compensate and I get dizzy, short of breath, and sometimes have what they call pre-syncopal events. My vision goes completely black, my head rushes, and I have to hold onto something so I don't fall over/pass out. This has actually been happening on and off for years. 10 years ago I sought treatment and the physicians assistant I was seeing was amazing. He started me on a beta blocker and it did help with my heart rate. Unfortunately, my blood pressure was way too low to continue the medication. I saw a cardiologist at that time who said everything was fine, and I was basically too young to be sick. About 5-6 years ago, when I was working in the hospital, I had some episodes of dizziness and pre-syncopal events. I saw a cardiologist at that time who told me I was too healthy to be sick and that it was probably anxiety.
And you know what? I DO have anxiety. Show me a special needs mom who doesn't. But I knew it was not responsible for my symptoms. It's extremely discouraging to have multiple medical professionals discount and invalidate your symptoms. It made me feel like maybe I was a hypochondriac. This time though, has been different. It's really disrupting how I live my life. I feel like I'm a crappy coworker lately because I'm sometimes to dizzy to do my whole job. I often can't take my kids to the park because I know I'm not going to be able to stand up the whole time, or I'm going to get short of breath and feel like I might pass out. Or I'm not going to make it through the whole grocery store without feeling sick. Or my GI symptoms might act up and I won't be close enough to a bathroom. I've had vacations ruined because I was too dizzy and/or sick to do anything for any length of time. We were shopping on vacation this summer and my mom had to drive me back because I was really dizzy and my heart rate was hovering around 130. Lauren and I haven't been able to take as many bike rides as we like because I can't make it around the block. I miss being able to do the things I really want to do. If I overdo it one day, I pay for it the next and it's really not always worth it.
So, now I'm diagnosed with POTS. I really like my cardiologist. He started me on two different medications. Midordine, to try to increase my blood pressure. And Florinef, to try to increase my blood plasma volume. My cardiologist said that my body behaves as if it's extremely dehydrated. I'm supposed to drink a ton of water and greatly increase my salt intake (life dream, I love salt). I go back in 6 weeks and he's hoping my blood pressure is high enough to add a beta blocker, if I need it, to bring my heart rate down.
I'm trying to be kind to myself. I restarted therapy to help me cope with my life stress that never ends. Greg's helping out more at home with things I really just can't do (like carry 60lb Lauren up the stairs most days). I'm really trying not to push myself. We were at the park recently, the kids were playing, and I sat down in Lauren's wheelchair because I felt dizzy. I got a couple strange looks that bothered me at first, but then realized I truly give no F's about what someone else thinks about me. I posted a link below from Dysautonomia International about POTS if you want to learn more!
http://www.dysautonomiainternational.org/page.php?ID=30
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