***Check out the Patients for a Moment blog carnival hosted by Chronic Babe***
Sometimes all signs point the same way. This seems to be one of those times, so I better pay attention.
The symptoms started when I was 12. I got the IBS diagnosis at 22 and the PCOS diagnosis at 25. The “big one” was in between at 23: undifferentiated connective tissue disease. This doesn’t mean a whole lot, but vague as it is, it’s more than I had before. Hypothyroid came around age 26 and Hashimoto’s was around age 31. There were others in there too, but they were smaller. Then again, I thought most of these were pretty small, too. After all, hypothyroid didn’t mean anything more than taking a pill every morning. And according to my doctor, Hashimoto’s had the same treatment as hypothyroid. PCOS also didn’t mean much until I was ready to have kids, which hasn’t happened yet. And IBS is a nice name and all, but the only treatment is diet, and I was really left on my own to figure that out, aside from the somewhat-useful-in-a-very-limited-way pamphlet I got from the doctor. No, the big one was definitely the connective tissue diagnosis.
I had symptoms for 11 years before I got any sort of autoimmune diagnosis, so I’d had plenty of time to come to terms with my symptoms and their permanence in my life. I had a good handle on things. So why did my world turn upside down again with that diagnosis? Suddenly I was going through the 5 stages of grief all over again. It was like I had to start over.
Last year my symptoms got much worse than they had been before and I finally had to leave my job. That short absence has turned into a permanent one (at least from that job) and that pushed me to start researching my illnesses all over again. I want to get back to work at some point. I want to date. I want to actually live my life! So I found web sites and books and online groups. I discovered some new things I hadn’t known about, and suddenly I was starting over with everything.
For the last month my mind has been whirling with the possibilities. It has been overwhelming and frustrating, but it’s also provided some hope for the first time in many years. I may be worse now than I was before, but it seems possible that I could improve, and feel better than I ever have in my adult life. I’m scared to think that way, but it seems possible.
Every week WEGO Health hosts a tweetchat for health activists (Tuesdays 3pm EST, #HAChat – please join!) Among other things, today we discussed the effects of having a diagnosis. That really got me thinking about how I feel like I have a new diagnosis now. In truth I have the same diagnoses as before, but I’ve just realized that Hashimoto’s and hypothyroid should be treated differently and that my PCOS and IBS could be treated differently too! It’s as if I was just diagnosed. I’m considering treatments that I’d never heard of until a few months ago.
As my wheels were still turning this afternoon, I found out about the Patients for a Moment blog carnival being hosted by ChronicBabe this week. The topic? “Starting fresh.” Perfect, right? Here’s what they want:
Is there something you’re doing that’s new, or different from how you’ve done it before? Are you starting something over that you previously didn’t succeed at doing? Are you giving a new doctor, medication, lifestyle behavior or workout regimen a shot? Fill us in on your experience!
Like I said, all the signs were pointing the same way. So I gave in. I took the time to really think about how strange it is to be going through all of this, especially so many years after what I had thought was my “definitive” diagnosis. This just goes to prove that the learning never ends. I am reading constantly, following blogs and tweetchats, trying my best to figure out which is the best approach to take. I am talking to alternative practitioners to learn about their different approaches. [I’ve been amazed at how willing they are to spend 1/2 hour on the phone telling me about what they do – the traditional doctors I contact don’t do this.] I am on a gluten-free diet and looking into more dietary changes. I am researching supplements and different medications. I am adjusting my expectations. I am asking for ideas from friends and family. For the first time in many years, I can be proactive again. In short, I am acting like a newly-diagnosed patient almost a decade after my first diagnosis and two decades after the onset of symptoms, and I love it.
I just stumbled upon your blog and am seeing a lot of similarities between our stories. (chronic constipation/IBS, PCOS, etc.) In addition I have suffered from reoccurring bilateral uveitis for two years now and the doctors still don’t know why. I would love to learn more about your journey and would welcome an email – email@example.com. Cheers!
Thanks for reading! I’ll be sure to send you an email asap.
Thanks (I guess!) for the timely reminder about “starting over” in the journey toward figuring things out. Mine seems to be more emotional than physical, but the road-maps, such as they are, seem similar.
Wow, that’s an oldie! It’s amazing how far my health has come in the past 3 years! Thanks for the reminder 🙂
Good luck Karen! Whatever the journey is, just take it one step at a time. And pop by here when you need a cheerleader!