Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Wednesday, January 20, 2010

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).

Things ain't always great...

Here comes a rant and no pictures. It's an Addison's and attitude rant. I'll be coming clean with feeling crappy.

I've talked to and emailed with some Addison's people lately and they're under the impression that I'm always perky and cheerful. Anyone who knows me in person knows this is NOT true. I'm often grumpy, completely politically incorrect and inflexible about doing things late in the evening or inflexible in general! Here I've given the false impression that "life's awesome all the time!" Just the other day my poor son said to me, "I wish you weren't hurt, you're very grumpy when you're hurt."

I can't afford to complain too much here in a public forum because the world can see it, clients can see it and family can see it. Who the hell wants to hear me complain?

If you're still reading, you DO want to hear me complain. The only way I've been able to cope for the last two months, keep working and do my volunteering has been to stop doing much house work, go to bed around 7 or 8 pm, take long baths, not do paperwork, skip showers (my hairdresser would be so proud to read this, she's been telling me to wash my hair less! Right Erika?), be more efficient with my responsibilities and not return emails. I've been a horror to be around. Always exhausted, crying, asking for things to be retrieved for me, relying on my husband and son to help me do my job, crying more, crying again, drinking too much booze.

I think I've been chronically underreplaced with my Hydrocortisone. Besides being exhausted, I don't feel like eating, even don't want to eat chocolate. I take 25 mg of HC a day and I'm hesitant to take more but this chronic stomachache is an indication that I need more HC. I had to cut out florinef because my BP was high for me 150/90. Sometimes I hate having to balance my hormones all by myself. Why can't my body do it for me? I was feeling like my thyroid was screwy, maybe it wasn't maybe it was just that I was walking around on a broken hip for months*? When I feel well, I don't mind the meds. When I feel bad and don't know what's what or when I blatantly ignore my undermedication symptoms, I freaking hate all this balancing and figuring and asking for advice. Luckily, no matter what's going on, I can count on being able to sleep. If I didn't have that, I would go bonkers. Actually the hip hurt so bad for about 6 weeks and I was having difficulty sleeping. I did think I might go bonkers. My family probably thought they were going to go bonkers too. I was prone to spontaneous outbursts of yelling, crying and bad language.

*I'm figuring the stress fracture started on May 28, 2009 during the Pocatello 50. I finally submitted to the MRI on December 29, 2009 and was diagnosed with the stress fracture that day. Pain went from an annoying ache in May to near inability to walk in early December. I purchased crutches weeks prior to my diagnosis, that's how much it hurt!

I'm going to shut up now. I've complained enough. I'm feeling well today. I'm feeling energetic and I'm not grumpy and crying or yelling at anyone, I'd better make the best of feeling good!!!

Many, many thanks to my husband for cooking and cleaning up the kitchen and for taking up my slack with my business and around the house. Thanks to my son for being kind to me when I wasn't kind to him and for helping me work. Thanks to all of my friends (Milissa, Joanne and Kim here at home) and all of my cyber friends for sticking with me and accepting me and my grumpiness. Thanks to my clients for not giving me the boot when I wasn't able to do much without help for the last couple of weeks.

Thanks to everyone for their kindness and support, it's meant the world to me!

Sunday, January 17, 2010

Healing like a 12 year old! Yay!!

My new hospital gown that my Mom made for me, it actually fits and has multiple ties and buttons to insure I'm not flashing the world my stuff.

Left-January 17,2010 Right-January 4, 2010

Went to the ortho today and have great news! I'm "healing like a 12 year old"! Yahoo!!!!! In the picture above, the left is Xray from today, the right is the Xray from January 4th. The circles are the sites were the bone regrowth is occuring.

Blood pressure is down since I cut out florinef. 120/80 today.

I'm still exhausted and have been since I stopped exercising. I'm starting to think I was self medicating with the exercise and it was helping me to not be so tired.

Water running and spinning in small, increasing increments have been approved. Increasing weight bearing on the broken hip and 2 crutches has been approved.

Here's the general timeline, I didn't take notes so I could be off:

  • 2 more weeks on 2 crutches with increasing weight bearing
  • 2+ weeks on one crutch
  • carry crutch around and walk like a human
  • 8 weeks from now, resume walking
  • 12 weeks from now, think about starting running