Lord have MRSE (or MRSA)!
December 1, 2005 7:52 PM   Subscribe

How to cope with unpleasant and not fully explainable longterm medical issues?

How to begin? So I have a clotting disorder of unknown origin/cause that has been treated for a decade with Coumadin (warfarin sodium) which has been in check, but a batch of cellulitis that is suspected to be MRSA or MRSE and apparently multiply antibiotic resistant has caused me to clot superficially (apparently anticoagulants do little to stave off superficial clots). This has resulted in two episodes and 8 days total in isolated hospitalization.

Now, I'm talking to doctors including the best specialists in my area and am getting answers that are appropriate for current medical understanding and technology. My rational mind is working overtime and really doing the best I can given circumstances, but that leaves a hole.

I'm pretty darn in touch with the emotions that are going on (hate, anger and fear for the most part with a healthy mix of sadness and disappointment) and I spend a fair amount of time constructively expressing and explaining my emotions with my family, but that still leaves a hole.

What else would you do to help move on? I mean, if genetics are an indication, I'll have another 40 years of leaving with episodic pain, swelling and so on and I can't say that I'm in love with that prospect.
posted by plinth to Health & Fitness (10 answers total)
I encourage you to pick up a book called Blindsided by Richard Cohen. It is written about how he has grown above his illness. While his illness happens to be MS, it is beneficial for anyone facing a long-term health problem - it is a tremendous book. (You might want to follow the link and check out the reviews!)
posted by Independent Scholarship at 8:09 PM on December 1, 2005

And.....Good luck!

posted by Independent Scholarship at 8:09 PM on December 1, 2005

That's rough. I would expect that seeing a therapist to help work through any residual anger/guilt/resentment could help a lot. At the very least, a regular appointment with a therapist can often offer the peace of mind that comes with knowing you're doing what you can to come to terms with and accept your condition.

Best of luck.
posted by ryanhealy at 8:14 PM on December 1, 2005

I have a chronic pain disorder that used to make my life a living hell. It's ill-understood, has no known cure, and is often misdiagnosed completely. For years it robbed me of any semblance of a normal life. Even worse, I couldn't really talk to anybody about it - it's kind of a difficult subject!

My advice? Don't give up.

I started seeking treatment about 6 years ago, when it first got really bad. Since then, I have seen many, many doctors. I have taken many, many courses of drugs that did no help at all. I have spent thousands of dollars on specialists, therapists, and people who, in the end, turned out to be snake-oil-salesmen. Even when someone was genuinely helpful, they were still expensive. My last physical therapist, who was an ENORMOUS amount of help, cost $180 an hour, and wasn't on my insurance. Furthermore, if I didn't live in a place like NYC, there's a good chance that I would never have heard of her, or even had the opportunity to talk to anyone like her.

HOWEVER, things have gotten much, much better. I have finally found a course of therapy that works. Granted, I'm not "cured," and I probably never will be. I still can't live the same way as "everybody else." There are a lot of things that I can't do, and a lot of things that I must do. HOWEVER, I feel better then I have in years. YEARS.

How did I arrive at this point?

1) I did my own research. I read websites, forums, and even academic papers that I barely understood because I'm not a doctor.

2) I kept trying new treatments. I kept seeing new doctors. I kept exploring different avenues of treatment. Some of these therapies were painful. Most of them were unsuccessful. However, I still kept an open mind.

3) I am fortunate enough to live in a large city, where there are doctors who are up on the latest theories and research. I've also dedicated a sizable portion of my income to treating my illness. No, I'm not telling you that you need to mortgage your house and move to NYC. But you have to make sacrifices. Yes, it is shameful that we are reduced to this. I can only think of others who have my condition, and who will never get the proper treatment because of fiscal or geographic reasons.

4) Over the last several years, my condition has become better understood. For most of medical history, my condition has been grossly misdiagnosed. You should hear the horror stories about the "treatments" that were used. However, mostly due to the community-building power of the internet, people have finally come together to discuss their symptoms. This has led to a complete re-evaluation of the illness- doctors are FINALLY starting to diagnose the illness properly. My point here is that the state of medicine DOES improve over time, and it is likely that, within your lifetime, there will be better treatments.

Anyway, back to my main point - Don't give up! Dedicate your efforts to improving your situation. I never thought that things would get better for me, but they have. It hasn't been easy though. Far, far from it.
posted by afroblanca at 8:56 PM on December 1, 2005

Best answer: I have the BRCA gene, which means my chances of breast cancer are 8 in 10. I've had five mammograms in four years, four ultrasounds, one MRI, and this past monday I had my first three (blessedly negative) needle biopsies. I know it's hard not to take a long term diagnosis and use it as a crystal ball. But you have to keep in mind that the medical stuff is not your future and it is not your life. It will be part of it, but only one component of the rest of your life, along with the people who love you, the people you love, the things you think are important.
At a time of such uncertainty in your life, I concur that therapy can be helpful (I'm grateful for all the help my therapist, a cancer survivor, has given me), but would also advise you to focus on taking care of your body (good food, plenty of rest) and on the people who are closest to you.
My most fervent best wishes are with you.
posted by Sara Anne at 10:02 PM on December 1, 2005

One thing that I may not have put enough emphasis on- it can be very helpful to find a community of people on the internet (or elsewhere) who have your problem.

In the case of my illness, such communities have not only helped people emotionally, but have caused a dramatic re-evaluation of the syndrome itself.

Best of luck.
posted by afroblanca at 10:12 PM on December 1, 2005

Response by poster: I'll look into Blindsided. Thanks Sara Ann - a couple sentences in their hit home pretty accurately.
posted by plinth at 1:30 PM on December 2, 2005

Glad to be of help. What you said about anger and hatred struck home for me. I've been working hard at being grateful for my life, which is a good one. I have my angry moments, but i have to realize that they're really mostly based in envy. And that just feels embarassingly petty.
posted by Sara Anne at 8:42 PM on December 2, 2005

I would urge you to seek out mental health care as well. Many people with long term or chronic conditions develop depression. Many medications can also contribute to depression. Depression (or any other type of mental health irregularity) is NOT a normal part of aging or of a chronic condition.
I would also urge you to seek support groups, whether live or virtual.
Bring it up with the doctors in charge of your care now, or contact your company's EAP if you have one and seek out counseling. You can also contact your health insurance company and see if they have a case manager who can assist you (case managers are usually clinicians who are trained to holistically guide people with chronic/long-term conditions in all aspects of care). Good luck.
posted by FergieBelle at 8:28 AM on December 4, 2005

you might consider keeping a journal. it can be an outlet for intense feelings as well as provide data in the form of a medical history to help analyze your condition.

try to strike a balance between researching and managing your condition and putting it out of your mind by getting busy with other things, when possible.

i enjoyed this book on the subject of illness, as well as this book.

remember, you are not alone, and, in the end, all things do eventually pass away.
posted by macinchik at 9:36 AM on December 5, 2005

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