I thought this was hysterical! Some times I wonder if Im on that bus! Anyway.. Im sorry I havent updated in a while. Its been a hectic holiday. Iam so glad to see the New Year.
Iam still recovering from surgery. My hair is growing. The scar is healing. I do feel better in many ways. In other ways, things have just shifted. I dont have constant headaches or pressure. They come and go. I have had one for 4 days now. But for the most part they are not as frequent.
I have been having issues with my blood pressure. I was taken off the beta blockers back in October. My cardiologist felt I may have been over medicated after surgery. Im having dizziness when standing. It feels like Im going to black out...and then the lights come back on. My cardiologist put me on a medication for POTS (Postural Orthostatic Tachycardia Syndrome) to see if my symptoms improved. They did..but my blood pressure went up. He adjusted my dosage 4 times. It was still high. I had stopped the medication on Monday after seeing my pcp.
I went to a new cardiologist on Wednesday. My bp was 144/97. He ordered bloodwork, put me on 2 new medications and ordered an echocardiogram. He wants to see my again in 2 weeks.
The medication does help with the symptoms. So it seems to be POTS. He may order a tilt table test after my bp is under control.
I had both of my youngest children at the nl last month. My youngest son Mitchel is showing symptoms..headache, dizziness, visual diturbances, legg weakness, balance problems. My daughter is still having headaches. The doctor ordered mri's and mra's. Im no doctor..but they didnt look right to me. The nl said no, but I recently found out that someone I know went to this same dr (after a confirmed dx of chiari) and he told her she didnt have chiari!!! So of course I want a second opinion.
Iam working on putting together a Chiari fundraiser in June. I live in the Hudson Valley, NY. It will be a barbacue with chiari awareness items, raffles, gifts..ect. I will post more info as I make more concrete plans. Iam very excited about it. I love meeting new people who are affected by chiari. Its almost like an unwritten bond between people who share common challenges in life.
You are always hearing about new idea's for common obsticles we face daily in our lives. People are always drawn to people's stories of success. "How did they do that?" "What can I do differently to accomplish the same outcome." " Why are they so satisfied and happy?" For the average person...it is hard to do this. We as chiarians are somewhat of a rare breed. This makes it even more of a challenge.
Iam starting to see that we are all warriors. It is a constant fight. In every arena we enter. Whether it is finding the right doctors to treat us, to social security disability, family & friends understanding our condition and how it places unseen challenges, insurance companies paying for the right treatments, and learning to become more dependent when we need to be. Patience and perseverance have to go hand in hand. If you aren't patient you will be miserable while you are persevering. You will lose focus on what is really important.
I pray that everyone is having a painfree day. Please share any idea's you have for fundraising. If you would like to come join us, please contact me for travel info and directions. It looks as if we are going to have it the2nd or 3rd Sunday in June.
- ▼ 2009 (12)