I am grateful to everyone that helped me in any way with the recent Conquer Chiari fundraising walk. At the 30 nation-wide sites, 3500 walkers participated, raising over $250,000. More information about funds raised is to come. Currently, my team has raised a confirmed $1445. However, I know that some donations haven't yet been accounted for. Whatever the final number ends up to be, I am so thankful to everyone that walked and donated.
Since the walk last Saturday, my body has had a flare of all symptoms, particularly those directly related to settling/dysautonomia. It's like every step I took in the walk made my head sink a little lower on my spine (at least that's how it feels). I've had a migraine for several days in a row in addition to a difficult instability headache. I've also had worsened nausea/pounding heart/breathing problems, all associated with cranial settling. The only thing that helps is traction. I've been using my Aspen Vista collar for cervical traction. It's not perfect, but it works as well as any home traction. Except for if I lay on the floor, and someone pulls my head away from my body...that is the ultimate symptom reliever. It's a great simulation of my hopes for a surgical outcome: relief of the headache, the overall sick feeling, and better breathing/heart functioning. I can't WAIT until surgery.
More than I really embody the adjective "courageous," I have been forced to practice the virtue of patience. Because I always seem to be waiting to feel better. Waiting for the doctors to think of a new treatment, to carry out that treatment. I wish I didn't have to be so darn patient!!!
Work is hard. My workdays are quite oppressive. I am definitely working as much as my body will allow. My days are as long as I can possibly stand them to be, often longer. I smile for those around me, but when I get in my car, I often scream just to release the pain and frustration. Then I go home and remain horizontal until the next time I have to work. Living this life is really like putting on a show. It's all an act! I guess I'm getting pretty good at it. I just wish I didn't have so much pain and sickness to hide.
I've been working hard to change two things about myself:
#1 I've finally switched to Skim (lactaid) milk, after a very long and gradual transition. It may not seem like a big deal, but it is to me.
#2 I've changed my sleep schedule. I took advantage of the calendar alarms in my phone to gradually wake up earlier and earlier, which makes me get tired earlier and earlier. It was a challenge, because tiring myself too much makes life impossible. But I'm proud to say that I usually fall asleep (without a bunch of sedatives) in the p.m. hours, and I wake up around 10 a.m. with no alarm. With an alarm, I can wake around 9:30. Any earlier, and it just doesn't seem to be worth it. But I'm very proud that I'm no longer up all hours of the night. I only need 50mg of Provigil, plus 30mg of caffeine, to get through the day. The extra stimulants were causing my insomnia (along with my episodes of hypomania).
In fact, it's almost 9:30 p.m., and I'm getting very sleepy. I may not need any sedatives or tranquilizers tonight. And I should have no problem waking up in the a.m. hours if I go to bed by 10 p.m.
That's all for today. Thank you to everyone for your ongoing support. I know that it's hard to remain interested and supportive when my challenges have been going on for so long. I also know that my problems are not the worst problems to have. I know that I am lucky to have so many people encouraging me. I just still have to find a way to force myself through each day. And that will can only come from inside.
