I'm legit now

It's official, I'm off the crutches and free to walk as much as I'd like. I made Dr. Mo Brown repeat that twice and threatened to tape record him saying it because I thought my husband and friends would think I was making up that statement. I brought the crutch (that I was not using much) to my appointment and was praised for bringing my "prop" along.

It's such a relief to be off the crutches legitimately. I've been using them less and less over the last few weeks. Dr. B says I should be back to where I was running wise in 4 - 6 months. What a coincidence, the Hardrock 100 lottery is today and the race will be held in 6 months and 2 days. Perfect timing! If I don't get into Hardrock this year, I will need to do another Hardrock qualifier this year so I can try to get into the lottery next year. Today is such an exciting day because I can start planning out my race schedule when I find out if I get into Hardrock or not. Either way, I'm excited to get my ass outside and into the sunshine. I've been homebound for nearly 3 months now.

On the endocrine front, I'm starting to feel much better. I'm still tiring out easily and sleeping a lot. I'm hoping that the addition of a little extra T4 and increasing amounts of exercise will get me mentally, emotionally and physically to where I was.

All is well!

Paper whites, icicles and snow

I hope I didn't give you all the impression that I'm running around crying all the time. I just wanted to make the point that I'm not always running around wearing Halloween costumes, smiling and laughing. I had a stomachache for about 3 weeks and I finally realized the cause which also manifests itself as being fatigued and glum. That would be low cortisol! My theory is that I was taking 25 mg of HC but my need was slightly more, like 25.5 or 27 and so on a daily basis I was running a little behind but not enough to make me say, "Hmmmmm, I'd better take some more HC." I upped my HC this week from 25 mg to 30 or 35 mg/day and amazingly (insert sarcasm here!) I got my appetite back and a little energy. Yahoo!

I've been cleaning houses as exercise. It's been an interesting study in efficiency since I can't carry things too well. It's making me silly sore in the arms too.

Tomorrow I meet with my physical therapist/personal trainer/athlete guy so he can give me some working out motivation that will not compromise my healing. I'm sure I'm doing enough on my own to compromise my healing.

Trumpeter Swan dwarfing the Canada Geese!!! TS are huge.

I can't get out in the snow but Dolly can. She loves it.

Dolly, a girl dog, is a medical miracle. She grew "balls". Not only am I healing like a 12 year old, I act like one too.

Dying from "Addison's Complications" rant

I'm not actually sure what I'm going to say here. I've been pondering writing this post for about three months now. I'm really, really annoyed at certain organizations posting obituaries and saying "died from complications of Addison's" and giving no specific information. It terrifies me to think I could die from "Addison's complications" and not have any idea what these complications might be or how to avoid them.

I feel like the organizations and families of people who have died from "Addison's complications" are doing the Addison's community a HUGE disservice by frightening us when they could be enlightening and educating us, sparing other Addisonian's from untimely death or being frightened of these "complications".

A brief digression, I was on an Addison's Yahoo board and saw this quote,

"When I was first diagnosed with AD, my boss (a woman) said, "So you've got a disease that makes you tan and lose weight. And you want to fix this?""

I immediately emailed the poster, Fran Segerson, for permission to use the quote and wrote this post. I could tell she was a spunky, fun woman from our exchange!

Later in the summer, I read Frans obituary in an newsletter. When I eventually put together that the quote was from her and she was dead, I contacted her family to ask what had happened. Her daughter was kind enough to respond with the information below (she gave me permission to share the information) that helped clear up the ambiguous "complications" explanation.

"It appears Mom passed from Addison's complications. She was fine and then got a stomach bug while on vacation in Spain and i think she knew she needed to go to the hospital but didn't want to get in the way with the rest of her travelling party so she stayed back and probably just got really dehydrated. We unfortunately aren't going to know exactly what happened until they finish the results of her autopsy. They say it will take at least 2 years. It's so hard to not know but after discussion with her traveling companions and from living with her- i think it was what i stated. Sorry for your loss- i know mom was a great friend to everyone and a resource for lots of other Addisonians. Best of luck. Patti Wohl"

Also from Patti: Absolutely , use whatever is helpful... I moved back in about 5 years ago because when she did need help it seemed to be escalating faster than when she was younger. In fact the last few times she needed to go to the ER she got so dehydrated so quickly she started to lose her rational thought and it became a struggle to get her there, once hydrated she would thank me for getting her there and she would be back to her 30 year old energy and atitude for life( she was 63 but no one could have told her that)! My sister never saw her in distress and had no idea it could get that bad. Her doctor here is convinced that she passed from a coronary event brought on by dehydration. She had no heart issues at all. My mother would be so proud of you for doing what you are doing. She had said several times early on that she felt so alone with the Addisons but since the email groups ect.... She felt like an important part of a vital community.

April 22nd is the first anniversary of Fran's death. I think there's something that all Addisonian's can learn from her death, dehydration is dangerous and can kill you, go to the hospital when you need to, keep your injection kit in working order and don't be afraid to use it because too much cortisol is better than too little in an emergency (that's my contribution to the lesson).

Some info to let you know what a great woman Fran was and how well respected she was

• http://www.dot.state.ri.us/documents/news/interchg/Fall2009.pdf page 20
• http://www.wtsinternational.org/uploadedFiles/Chapters_-_Community/Rhode_island/Document_Library/WTS-Rhode%20Island%20-%20Newsletter%20Summer%202009.pdf page 4, bottom right
• http://www.seapubs.com/eBulletin5-21-09/obituaries.htm
• A bike guide dedicated to her memory: http://www.dot.ri.gov/bikeri/