I remember last year at this time I was feeling so crummy. I had my first sinus infection and I couldn't get in to see a doc until the new year. That's when I finally decided I needed to see a Cushings expert. After having done everything possible to show my local docs I DID have Cushings, they told me to "wait it out." Why would a doc say that? Don't they know those 3 little words could kill you? Ugh.
Anyway, so in January of 2008, I called Dr. L and I made an appt to come out to Seattle to do "Cushie Camp." And in February, I flew out there, meeting my mom there (still love that she made that time to be there for me) and we stayed at the Inn there and I did the 5 days of strict testing including another IPSS. I met some incredible people there at that point in time and I will never forget them. I wish they too could say they were going to have a fresh new year. Unfortunately they are still fighting for their lives with Cushings. Makes me so sad. :(
In any case, I got the highs that needed to prove to everyone I did indeed have Cushings. I have to point out something I've forgotten to mention. When I found out I had Cushings back in 2007, it was a few months after my parents dog died of Cushings. I can't tell you how scared I was at the point in time. Like I was going to die soon too. Thankfully I learned it was something that could be fixed. I was determined to find someone to fix me. So when Dr. L confirmed that I did have Cushings, I was actually relieved. Now his team could fix me. That lead to the scary thought of "brain" surgery. Yikes!
I didn't think I'd get the diagnosis, so my husband and I had already planned a trip to Disney in May of 2008. So I couldn't go before then. Between the kids birthday, Easter and the trip, surgery just had to wait. But how long? I struggled with doing it before summer ended or after summer ended. In the end, I chose before summer. The kids were in school for the last 2 weeks, so I could somewhat recover once I was home.
But Disney was awesome when we went, and I will truly never forget it. I felt great and walked for miles and miles. My parents were there as well as my MIL, so it was a big family event. That is what got me through to my surgery, remember all the fun and the awe on my kiddos faces.
Then I flew back out to Seattle the first of June. I was a bundle of nerves, but I thought I was ready to be done with this nasty disease. Again, while there, I met some amazing people. It was nice to be there knowing others were going through similar things. As most of you know, the first surgery didn't take, but thankfully the second one did. I felt like crap, but I was finally able to go home after a week.
I knew it would be tough being home, but nothing can prepare you for how you feel then. And then going up and down on the weaning roller coaster. Ick. I can tell you now, I'm not looking forward to weaning off the 20mg, cuz I know that will probably be even harder. But after 6 months of feeling crappy from weaning and having horrible hormone deficiencies, I can finally say I feel so much better. Almost "normal!" I don't want to jinx it though.
My only issue right now is that my TMJ in my jaw is REALLY hurting. Even taking the extra hydro, it's still aching bad. I have an appt with an oral surgeon in 2 weeks to get it checked out. I need to call back and see if they can up the appt. It hurts that bad. :( I've seen my chiro to help with the muscles in my jaw and it's not that . It's definitely the joint. I think the disk in my jaw may be dislocated. Least that's how it feels. I can't eat much, let alone things that are overly chewy or hard. :( I can barely open my mouth too. Brushing my teeth hurts. It's that bad.
Other than that, I'm good. I have energy again and I can do things I haven't been able to do in awhile. A whole year has gone by and what a difference it's made. Now here's to the New Year in hopes that it's uneventful for everyone in my family. We all need a year of peace. That's my wish for the new year.
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