Sunday, December 31, 2017

"As for sickness: Are we not almost tempted to ask whether we could get along without it?" Nietzsche


As for adrenal insufficiency and hypothyroidsm, could I get along without them?  The simple answer is, "yes".  More complex answer is, that I wouldn't be who I am now without them.  Chronic illness forces you (if you want to be healthy) to eat well, sleep well, maintain a degree of fitness, learn about your condition and to advocate for yourself.  After you're done doing all of your pills for the week or month, all of the above items are nearly a full time job.  We are forced to be efficient with our time so we can fit it all in.  Our social networks change, to be healthy we have to socialize with others who have similar conditions so that we can find knowledge and experience.  Doctors simply are incapable of understanding and comprehending what it takes for us to be healthy physically.  Often, they are such poor advocates for us, they make us feel worse physically by neglecting to know anything about adrenal insufficiency.  Hell, sometimes they attempt to kill us by withholding emergency injection kits or will not allow us to have enough steroids on a daily basis to live a decent life.  They have no clue about comorbid conditions and then have the nerve to tell us we are hysterical or depressed.  (You all know how I feel about most physicians.  I'll stop.)

My point is that I and probably you are not who we would be without our sickness.  I constantly fear dying either by a doctor's mistake or by my own stupidity.  For this reason, I live every day to its fullest.  I set my goals high.  I do stupid things that would make for good stories if I die doing them.

Yes, I could get along without sickness but I wouldn't be who I am today. I don't think I would want to challenge myself as much physically, mentally and emotionally if I knew I had time and knew my body was going to hold up.  Would I live each day with the fear of death like I do now?  Probably not.  Would I get as much accomplished if I didn't have sickness?  No, I'd think I had time.  I don't and you probably don't either.  Get out and do while you can.

Another thing I could not get along without are the friends I have made and become reacquainted with along this 16 year journey.   I love you all and appreciate you.  I thank you for being here for me when I need you, when I need a sounding board, when I just need to vent and for a kick in the ass when you think it's appropriate.  Without sickness, I would not have you.  I could not get along without each and every one of you.  You are the voices in my head when I need help (Wanda!).  Sometimes you're the voice on the other end of the phone when I need my husband talked through giving me a shot at the peak of a hurricane (Ashley!).

Thanks to you all for reading this and for being part of my life, many of you for lots of years.  Love and hugs to you all!  Happy and healthy 2018 to everyone.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         

Friday, February 24, 2017

Thoughts on hydrocortisone over replacement

I've been trying to put off writing this blog post for a while.  It's hard to admit that things that are completely within my control have gone haywire. Here it is.  I am not looking for sympathy nor am I attempting to get attention.  I want others to learn from my experiences.

I have spent a long time being over replaced on hydrocortisone.  I didn't know it.  I have always told people, "You will know if you're over replaced!  You will get fat and not sleep!"

Because I get a lot of exercise, my hydrocortisone needs are higher than the average person's.  Also, I think most of us think that if we feel bad, more HC will help us feel better.

From January of 2016 through July of 2016, I got A LOT of exercise and completed a run from the lowest point in the US to the highest point in the US.  It was hot and the effort was physically demanding.  It required a lot of HC.  When I was done training and with the run, I gave my body some time off.  I only taught spin classes and ran for fun. I couldn't do much more as I had splitting headaches (not migraines these were full on, straight up headaches).  I noticed my blood pressure was crazy high.  What did I do for this unrelenting pain?  I took more HC.

The headaches and high BP persisted until January.  I did try to get help from the medical community.  Their suggestion:  beta blockers or calcium channel blockers.  My reply:  NO.  I knew that the high BP was a symptom of something being wrong.  I needed to eliminate the cause of the high BP and headaches, not mask them and make myself incapable of exercise.  I lowered my florinef to no avail.  It might even have raised my BP.  I got my thyroid checked and it was nearly perfect.  Iron, fine.  I went off all of the supplements that I was on that were unnecessary.  Finally, I had nothing left to change.

In the mean time, I had become less and less able to exercise, sleep became less, hair falling out like crazy and I got a kidney stone.  BP remained impressively high.  Headaches consistent.

The only thing left to change was my hydrocortisone.  Hesitantly, I decreased it on January 8.  Within days, my headaches were gone.  Within a week, my BP back to normal.  Within two weeks, my appetite decreased.  I hadn't realized I was eating so much and so often until I wasn't nearly as hungry.  I think it's important to note, I didn't gain weight from too much HC.  I always assumed that if I took too much HC, I'd get fat and I'd immediately know that I was over replaced.

It's been almost seven weeks since I decreased my hydrocortisone.  My weight is about the same.  I am sleeping better.  My eczema has flared like nobody's business (because there's less HC in my system).  My hair is still falling out badly enough that I will soon need to wear a turban.  I'm not kidding.  [I have read that hormonal hair loss takes three months to stop and then reverse, my fingers are crossed that the loss will slow, stop and reverse in the next few weeks.]  I have what I think is a stress fracture in my foot, probably from spilling calcium.  I am a hot mess but trying to learn from my experiences.

I am taking this less mobile time in my life to find a new routine in my daily life and exercise life.  Live and learn!