Experience dealing with chronic/painful diseases in the real world?

First, I am a breast cancer survivor of what will be 10 years this coming July, when I was diagnosed. I was off work for ten months during treatment of surgery, chemotherapy and radiation. The chemo was an aggressive schedule and left me with peripheral neuropathy from permanent nerve damage. Then, a year or so ago, the episodic sessions of extreme lethargy, mental fogginess and muscular pain were diagnosed as fibromyalgia. I had IBS before I was treated for cancer and now it's just major GERD. I take 5 prescribed medications a day.

My sick leave usage is such that I am often out of earned leave credits and docked for time missed from work. My supervisor knows of my medical condition.

That said, I feel like a "bad employee" due to the amount of time I cannot go to work. Sometimes I drag myself to work and work through crummy days. The days I cannot drag myself to work, I call in sick. I can be perfectly okay enough to work one day and the next is a bad "fibro" day.

But I'm retiring in just under seven months, so my experience is at the end of my employment. I would have worked longer had I not developed this condition, but now I don't want to struggle any longer than I have to, so I'm retiring early. I won't get full retirement benefits, but enough to survive. It's worth it to me to be able focus on my own health and my flock.

Not sure how helpful my experience is to you.... but this is what I am doing.

 

I cannot speak on your dealings with your illness but as for the job part I recommend government employment of some type just for the benefits and it is about the only place to work where you will be accommodated for your illnesses and not be expected to produce. I am being serious, a good friend did this 30 some years ago knowing his life would be full of doctors and hospitals. He works for the parks district.

 

I also have fibromyalgia and I understand where you're coming from. Unless you have it, you can not understand the pain one goes through. I have days I sit at my desk and cry because I hurt so bad. Just make it home and crash into bed. I have a very understanding boss as far as taking off, but only have so many days I can take a year and the other's I don't get paid for. I have to continue working for the insurance as my husband had a massive heart attack and we have so many medical bills. My doctor finally found the right meds for me and I am doing so much better. Have a "spell" every so often, but not nearly as often as before. I know it's something I'll have to deal with the rest of my life and just deal with it day to day.

 

I have Crohn's Disease. Not a pleasant disease to have especially if you have all the other stuff piled on top of it.

Darin

 

My issues have been with injuries. That said,for you to be able to fulfill your dreams,, you have to get control of your health problems. For whatever reasons the medical community seems to focus on medicating the symptoms rather than curing or even finding out what is actually going on. The jobs climate is increasingly slanted towards employer rights, which means you are going to have a real problem finding and keeping a job until or unless you can control your disease. I'm not trying to depress you, I am trying to make you understand that its you that is going to have to push your doctors to find out and help you deal with this and that includes finding a medical professional that has the training,facilities, and experience to help you. Don't give up, you don't want to spend your life going through this.

 

If you choose your specialty wisely, you can be a veterinarian but not have to be on call for patient care. Nutrition, pathology, or parisitology (for example), or many kinds of research don't require robust health.

Also consider working for yourself - an animal behaviorist, trainer, and I'm sure other specialists can work on their own schedule. Just make sure to move to a state where you can get decent independent health insurance. Research and writing can also be done from home.

Start right now investigating the disability accommodation departments at the universities you are considering. Talk to them now about what kind of documentation you'll need, what problems you anticipate, what kind of help or consideration you'll need. Don't be too proud to ask for help.

The difficult advice is, plan for your health to get worse. If it does improve, great! But realistically, if so many things are wrong when you're young, they may very well get worse as you get older. So save money religiously, don't get into debt, live below your means. Move somewhere with good public transportation, and if you buy a house make sure it's accessible.

For chronic pain, make sure you have regular access to a heated pool or sauna. Walk at your own pace in the water and stretch gently. (With fibro you can make yourself worse by forcing too hard.) You have to keep your muscles stretched and exercised, or they will cause you more pain, which causes more loss of strength and motion, in a downward spiral. Hospital therapy centers often have memberships at reasonable rates.

Remember that there's a two year wait between being approved for disability and being eligible for Medicare, so don't put off applying if you begin to go downhill. You can still work part time and receive disability, if necessary. No, being on disability is not an admission of failure. You can always go back to work again full time if you improve - but it's very hard to come back from being very sick with no income and no decent health insurance.

 

Do you do remicaid? (spelling)