Addison's community and family: Should I continue this blog? If you want to continue to see pictures and hear my commentary about Addison's, migraines and endurance racing, let me know by emailing me contact at addisonssupport.com or by using the comment function at the end of this post (please comment anonymously if you would like). If you do want me to continue and there's something you'd like me to mention or take pictures of, let me know!
I've got a lot to say and will say it if anyone wants to hear it. Things I'd like to comment on if anyone's interested:
- Gluten/Addison's connection
- My recent reprieve from migraines!
- 2008 events and training
- Probiotics
HI Dusty,
ReplyDeleteI would like you to continue your blog. Esp about your traing and your races. I would like to know what you know about proboitics
Jan
Dusty,
ReplyDeleteOur 16yr old son was diagnosed with Addisons in August and we are trying to learn as much about the disease as we can. He currently plays basket ball for his high school and is having trouble keeping hydrated. Your blog seem to have plenty of useful information that we are trying to use with him. Please continue adding to the blog.
Brian
Keep on Blogging!!!!!!!!!!!
ReplyDeleteWould like to know about ur 2008 events and training...
not sure why but I will be doing the 100 miler back at the TETONS in 08' ---YIKES!! scary just to type that -lol
u going back to the tetons races?
Yes-please do. I like to hear about people who struggle and fight against bad odds-my running friend had Lymes Disease my mom had crest/Lupus/scelerderma and I know who you are as I ran GTR 100
ReplyDeleteDusty,
ReplyDeletePlease continue your blog. Your information is always very informative. My granddaughter has Addisons so I try to keep myself as informed as possible. I admire you and your determination.
Thanks Jan, Brian, Wanda,Bob and Anonymous #1 & #2!
ReplyDeleteI will continue blogging because of your encouragement. I will try to write about topics that you're all interested in.
:) Dusty
Dusty,
ReplyDeleteYou have always shared pertinent and useful information. Keep on blogging and think about writing a book!
You're so damned nice Linda!
ReplyDeleteXXXOOO
Dusty
This is the first addison's site I have seen focus on training. Thus, It is a gem.
ReplyDeleteThanks addisonianofnebraska!
ReplyDeleteYes, please do! This is a great site! I don't run really, but play competitive tennis year long. The summer can be hard to manage. Your blog will certainly help. My Doctor is at Mass general(Boston),she is really open to working with me.
ReplyDeleteWhen I finally got diagnosed(its been 14 years). I had been going to my GP and every time I went in(alot)they always said I had a great tan and could not find anything.I know I was in bad shape.I was very sick after a trip to a Fla outside tennis camp (Feb). Then it was 3 mos before I got diagnosed. This happened because i started reading medical journals/books..,anything to figure this out. I ended up closing in on this and made an appointment again. But this time I said "I feel very bad and why am I so dark?". I did not want to come across wrong to the doctors and wanted to point out something very obvious that was in our faces. I went to the hospital that afternoon for a stress test ( not sure of the actual name) and when I went to the endo that my gp sent me to, he asked me if i would mind if his associates came in because they never see this! I said yes. But in mind my I was thinking I will be going somewhere where they do know about this! My mom was written off as a complainer but she truly was sick. I am thinking of getting her medical records as I am executrix. Her lungs got involved. Is that an associated issue? I thoght I saw this somewhere in your blog. My parents had autoimmune diseases(sjogrens,graves disease,hashimotos,my brother has ankykosing spondylitis and cousins/neice have thyroid problems.I also have hypothyroiditis).
since my parents were sreeing an thyroid specialist at MGH, I was able to talk to him ask his reccomendation.
I still feel that I need to adjust my HC according to my activity. Thats when I found this blog.
I have an opportunity to go to Nepal to build with Habitat.I really want to go and your general and kit info is very helpful. I was thinking of bringing a water purifier. I am somewhat scared of picking something up via water. I did go to Italy 3 years ago on an 11 day tuscany bike tour. I managed it well. Altitude did play a part one day. I had to ride in the sag wagon! I need to look into that because we will be near the Himalayas or in them.
I also have solucortef. I am getting a supply to take with me and syringes. I called my endo and we think 6 is good. Nit sure. maybe i should take 10. I cant believe I have not looked at the solucortef date on the one I have been lugging around on trips. It is well past expired!! I do like the idea you gave about opening it for emergency practicing.
I have printed a lot of your info out. I will probably have some questions. Thanks again for all of this.Barbara