Friday, July 04, 2008

Not dead yet!

A recent anonymous comment asking if I was dead has me stopping by...

No, not dead yet. ;)

I'm at a weird low point right now and don't have much to say to anyone. Yes, the Cushing's is back - err, never left or who the hell knows. I'm not feeling confident about the chances for a forever-cure in my future. I guess that might shut up anyone. ;)

A few months ago a fellow-Cushing's patient passed away. She was my age, has children the same ages as mine, had all of the same surgeries as I have had. She never seemed to recover after her bilateral adrenalectomy, didn't feel well and laid down on the couch after reading her children a bedtime story. She never woke up. :(

The cardiac aspect of Cushing's is terrifying. You putt along for twenty-some years to get a diagnosis and then grind out a slow path getting sliced & diced. Every scheduling takes 3 weeks or more, every blood test, 24 hour urine collection, picc lines, trips to the local ER lab at midnight for bloodwork, chewing on cotton swabs for salivary levels... all tests and procedures to get to the end, to the goal of a successful cure. All of that snail's pace progression is outmatched by the horror the disease wrecks on your body. A snowball of morbid medical decline picking up speed [severe cardiovascular damage, bone loss, muscle wasting, disfigurement, and have I mentioned cardiac?] . While doctor after doctor carefully dots their i's and the never ending tests and waiting for the results, then back to square one. It all tosses in roadblocks that cost days, weeks, month and makes for years of delay. Five abnormal/diagnostic value test values are not enough, and one normal result can outweigh them all in a single bound. You need a chart to keep track of the myriad of results and the algorithm is always changing.

The news of Natalie's death broke my heart. And also the sweetest woman I have ever met; SuziQ, who we lost a few years ago stemming from decades of Cushing's damage.
.......

I'm still convinced that I have PPNAD [primary pigmented adrenal disease] or something similar. Of course the last case scenario cureall for Cushing's, for me at this point, and for PPNAD are one and the same. Bilateral adrenalectomy. Put'em in a jar.

It is too bad my last extension of COBRA insurance ran out in May. I finished testing to prove that the recurrence (or never-cured) remains to be dealt with. *POOF* Endgame. Uninsurable. High risk insurance pool only covers 70k. My pituitary can poop bigger than 70k!

Now I am one of those people. The uninsured. The chronically ill. The unemployed and too apathetic to bother hiring a lawyer to go after my 5+ years off work with Social Security.

Apathy. Yes apathetic, I think that is where I am.

Even if I get to have a BLA, even if we force a cure, even if I end up on every hormone pill/patch/shot or gel in the world. Well, who says I won't lay down to rest and die? :( :( Poor Natalie. Poor Natalie's children and husband.

I suppose if I find a chance to get a shot at it; I'll do it.

But only if they promise not to touch my freaking nose. Egads. If I had known what I know now, post-op pituitary x2, I'd have asked them to put down the specialized endoscope and just cut through over my eyebrow. Or something, anything. Just leave my sinuses out of it, for heaven's sakes. Good grief I don't care about scars anymore. I did appreciate having my impromptu nose job during the last operation ~~~wheee~~~ all deviation is gone and my schnoz is straight as can be. But the misery of sinus complications just goes on and on. Spinal leak, Bacterial infection, scab hunks falling out in chunks out of my nose (from the surgery site), then a flourishing fungal infection just ties it all up like a neat bow on a Xmas present. Ew. Phhhhhhfffft.

I'm managing to get along, in the meantime, while I sit calmly in limbo. I've slimmed down my medications. No growth hormone, I don't know what the precise mechanisms are but I did gain energy but on the downside; 45lb very rapid weight gain and arthritis pain to boot. I can't afford growth hormone shots anyhow, as I am one of those people. The uninsured. The chronically ill. The apathetic. And unemployable. You know.

That's about all there is here. And since I cannot cure myself; despite years of research and medical community involvement -- with the best doctors -- I just feel as though even if I have a say; it is not a contribution. More likely a liability. Could you continue to encourage & guide other people to seek treatment of a disease you cannot cure for your own self? I can't.

Encouraging doctors to learn about this crazy disease and to know it when they see it, or at least retain a high index of suspicion? I always have time for that.

If you sense some silence and want to know the score, just cough or something and I'll check my pulse, m'ky? :)

17 comments:

yanub said...

Thank you for writing your blog. I had heard of Cushing's disease, but only the name. The face of it, you have contributed. Whether or not you continue to seek treatment or encourage others to get treatment, just you having been so honest about how it affects you will certainly do a lot of good. I hope you won't mind me putting you on my blog roll.

mertoo said...

Lisa, I will be without insurance later this month, so the COBRA thing interested me a lot. I found this and thought it might help you:
Once COBRA runs out, you're still guaranteed health coverage under The Health Insurance Portability and Accountability Act of 1996 (HIPAA). If you had coverage through your previous policy for at least 12 months, not only can you buy a plan, but insurance companies must also cover all preexisting conditions.

Here's the rub. While the government guarantees that you'll be offered a plan, it doesn't limit the cost, says Kathleen Stoll, director of health policy for consumer advocacy group Families USA. Unlike a group plan where everyone is charged the same premium, individual policies are underwritten based on age, smoking status and health profile. So if you have, for example, uncontrolled high blood pressure, you would pay a lot more than would someone in tiptop shape.

If you don't have coverage right now, however, you're likely to have a difficult time getting some — especially if you have a preexisting condition. You might find that the only insurer that will cover you is a state high-risk pool. And even then, the pool might not cover preexisting conditions. Moreover, just thirty-four states offer high risk pools, and Florida's is closed to new enrollees, while California has a waiting list, according to the National Association of Health Underwriters.

Anyway, hope it helps.
Mary

Sherril said...

Hi,

I posted about your post: http://theiciexperience.blogspot.com/2008/07/one-of-those-people.html.

Excellent job on an extremely difficult subject. Thank you for sharing.

Mckay K said...

Hi Sherrill,

Your post is so interesting and informative. I, like Yanub, had heard of Cushing's disease. You taught me how horrible the illness really is. In addition, for that I wholeheartedly commend you.

When you are already ill, it is no easy task to write a blog about what is happening to you. For me that is what gets me through the day. I suffer with multiple illnesses. When I can get out of bed, I blog about what is going on in my head.

I wish I had the answers you need. I wish I could find an insurance company that you could afford to pay. What I can do is offer you a standing invitation to visit my blog at

http://livingwithachronicillness.blogspot.com/

I hope that you will find something there to uplift you and encourage you to keep trying.

What is going on with your lawyers? How could you not qualify for disability?

As hard as it maybe, I beg you to get another lawyer and try again. Social Security turned me down three times before I was approved for disability. The Social Security office is betting on people giving up and not trying for a second or third or even a fourth time. When you are sick there is very little fight left. A good lawyer would have prevented you from this situation.

Robin said...

COUGH COUGH....you still out there, Lisa????

XOXOXO

Lisa said...

I have a pulse! It runs over 110 most of the time. :)

I'm still here, I'm just hanging low. ;>

Lady Blognanimous said...

I relate

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