Saturday, June 27, 2009

Tribute

This post is a tribute to a woman who is well known in the Cushing's community, our own Mary O'Connor, affectionately known as MaryO to those whose lives she has touched. Mary had Cushing's Disease rear it's ugly head in her life in 1983, long before the internet. She diagnosed herself after reading an article in a woman's magazine, then spent a couple of years trying to get a doctor to listen to her. When she finally did get to treatment, she was amazed to meet other patients in the hospital who were going through the same thing. She decided she would make a difference by making Cushing's awareness her goal. She created and runs the website www.cushings-help.com that has thousands of Cushing's patients as members on the message boards there. (She does this all without pay!) She also runs several other websites and blogs. She has been an advocate for all of us.

Well, Mary, I have news for you. Your work is paying off! Recently I've been in a position to tell people about Cushing's. And they don't say "What's that?!" They say "Oh no! I know about that. Here - look at my sub-clavicle fat pads!" (I have to admit that I was slightly taken aback by that comment!) Others have told me they've read about it, seen it on TV, know someone who had it. Mary, the word is out. People are learning about Cushing's! Your work has made a difference. YOU have saved lives, and no doubt will save more just because people have access to more information, thanks to you. People no longer have to suffer alone or feel humiliated and crazy. We owe you, Mary. Thank you so much.

So now, let's all educate the doctors!

Sunday, May 3, 2009

What Did Your Doctor Forget to Tell You?

Recently I made a new friend through a meetup group online. He's a 40 something man who is post-op pituitary surgery. He was on hydrocortisone for 4 months and then his doctor took him off the hydro as well as his Synthroid because in the doctor's words: "You are cured. You no longer need these medications." The poor man has been in terrible pain ever since. He is on pain killers for all the aches and pains, has no energy, and has told me more than once "I would rather be dead". I have been encouraging him to see a Cushing's expert, hopefully one who also is well-versed in thyroid disorders.

You see, when a pituitary patient is hypopit, it's not always as obvious when looking at test results, because in that case it's the pituitary that doesn't signal the thyroid, not that the thyroid itself isn't working. The doctor needs to know how to interpret the results, and unfortunately most pcp's and many endos don't know how to do this.

I don't know if my friend is hypothyroid, but I would bet you a dollar that he is too low in cortisol. His symptoms go right along with that. But my friend doesn't understand why he'd need to go back on hydro since he has successfully weaned. So he's been resistant in considering that this might be his problem. His doctors never told him about adrenal insufficiency, about emergency meds, or wearing a medic alert bracelet. He doesn't have Solu-cortef for emergencies and was not given a crisis letter to carry in case of emergencies. Let me make this clear: He had never even HEARD of adrenal insufficiency until I told him about the possibility last week.

Today I heard from him and he was in bad shape. He went to the ER several days ago, and they didn't do anything for him except check his heart. He was having trouble breathing, and he is in general in pain all over. Even though he told them he had recently had pituitary surgery, they didn't check his electrolytes or his cortisol levels. They sent him home feeling just as bad as when he went in. He knows he is going to lose his job over all of this, and that's the least of his worries right now. He wants to die.

Tell me why this has to happen. Are endos unaware of the possibility of adrenal crisis and possible sudden death because of it? Is that possible? Or do we matter so little to them? Or do they believe that giving us needed information will empower us and make us less reliant on them? Do they just forget?

I would really like an answer to this question. Patients deserve better.

Wednesday, April 22, 2009

Thought I'd let everyone know how life is going for me these days. Let's see, I'm working part time, and I'm enjoying it. I work in a department store and stand on my feet 5 hours a stretch....and I can DO it! No way I could have done this 3 yrs ago, and probably not even 1 yr ago. So I am still getting better! It has been a long road, but for the most part I have my life back.

I love interacting with the customers on my job. I felt so reclusive for so long, but now I love being around people. It's a miracle!

Not everything is peachy-keen, though. My headaches have returned recently, but they're not as bad as they used to be, so I'm thinking maybe this is just a sinus thing. I still have to try to balance things out - if I do too much (like recently when I painted for days on end), then I pay for it with fatigue and aches and pains for a few days. But I'm getting older, so maybe that's all that's about.

DH is still not working, but applied for a job yesterday that feels really promising. I have everything crossed!!! This would be ideal for him. Send prayers our way, wouldja?

We're still dealing with our grief over the loss of our son in law. I'm not sure we will ever get over that, actually. Still, there are good things: A daughter graduating from college in June, another was accepted into her nursing program, and our son is getting married and buying a house. So we have lots to look forward to.
Life goes on...

Friday, April 17, 2009

I think Spring has finally sprung. Funny how my body, mind, and spirit also seem to experience rebirth as the days get longer.

To be continued...

Sunday, February 22, 2009

Baby Steps

I start every post by apologizing for not keeping up with my writing...so again, I apologize. I think part of the problem is that I am just turning inward so much lately. I am avoiding people and just keeping to myself (and family). I don't feel like sharing much, and am just holding it all in as much as possible. I really feel like I'm in hibernation. Waiting for winter to be over, waiting for something...not sure what...to happen. Yet though we've just gotten another big shot of snow, I somehow feel that Spring is eminent. I think the days getting longer is helping. Let's face it, winter where I live is depressing unless you are into snowmobiling, skiing, or otherwise freezing your butt off - which I am not. Wake me when it's over!!!

The stress of our lives this past year has changed everything. Not a day goes by that I don't worry about what will happen to us. Will we lose our home and have to move out of state in order to be able to make a living? Will we ever get past the pain of this winter's events? I don't know, I don't have any answers. I know I just need to hang onto some hope, and I am working on that. Baby steps.

Wednesday, January 7, 2009

Two Good Years, etc.

I wish I could write here consistently, but life seems to get in the way. Or maybe I just let it get in the way!

This is still a really difficult time for us. We miss Bill and we miss the family that we'd come to depend on. What I mean is, we just sort of took for granted that they would always be, and now that family is fragmented. Our daughter is not reacting to this death the way that we expected. I don't want to go into a lot of detail, but her behavior these past weeks is perplexing at best, and frightening at worst. She needs to grieve, and she is not. I know, I know, we all grieve differently. But she is not grieving. She's going on with her life as if he was merely erased from our memories. And that is frustrating and aggravating - because many many of us are grieving this loss. This loss belongs to all of us. But the memories they shared for 10 years have to be dealt with. I think she is afraid to feel her grief, but that's just my theory.

And yes, DH is out of work, but hopefully this time around it's just temporary. So he's not stressing about it, and neither am I. Yet.

I'm now 2 yrs post-op pituitary surgery, and I have some disturbing symptoms that I fear (and I HATE to even think this) may be a recurrence of Cushing's. I still feel better than before surgery, but my weight loss has stopped for the most part, and I only lost about half of what I gained. I have achey days, like the past two, where everything seems to hurt. The under the rib pain persists and I really suspect that has something to do with my adrenal glands. Some days I seem to do nothing but pee. Fatigue comes and goes, but I like to think that has something to do with depression. (I admit it - I'm depressed. I get depressed every winter when the sun hides for weeks at a time. And this year there are even bigger reasons to be depressed.) And I am not sleeping well most nights, even with the help of medication. Dr. F says it could be a recurrence, or low growth hormone, or possibly a thyroid problem, but he raised my Levoxyl dose and I'm not seeing a big difference after 6 weeks. Then there are the ever present digestive problems too - the local doc seems to think either ulcer or pancreas or possibly another blocked biliary duct. Whatever it is, being under-employed and paying $600 a month for high deductible insurance, I can't afford to start testing. So I wait and try to think positively.

Still, two years after surgery, I do not regret having had it for one moment. Even if Cushing's is rearing it's nasty little tumor-head once again, at least I've had two good years I wouldn't have had without the surgery. And that is counted among my blessings.