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

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ChickenWisperer

ChickenWisperer

Songster
11 Years
Jun 30, 2008
2,525
20
193
KY
First things first: I don't want your pity. I'm not coming here for a pity party and I don't want people coddling me or feeling sorry for me. It's life, ... things happen. I don't usually put anything this personal out for fear of being treated like a child, but I'm sure there are some of you out there who have dealt with the things I'm probably going to deal with.

Okay, now that that's out of the way - long story short, I'm a really sickly person. Ulcerative Colitis, possible Crohns, IBS, Peptic Ulcer, Fibromyalgia, and possibly Celiacs (we will have to see if the gluten free diet works.) I recently went into a pre-flare state; pain so bad I couldn't move without tearing up or worse. It's the first time in 7 years I've asked for pain meds, the first time in 6 I've been on steroids. It got me wondering about the things I don't know and the skills I lack that I'll need when I go out into the real world.

I'm wanting advice from those adults who have experience dealing with their own diseases. It won't be long and I'll be on my college adventure after my break and maybe even one day I'll find a job
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There is literally nobody around me, or nobody that I know of, who has had to deal with anything similar. I can't go to my own family or friends for help, so I thought I'd ask for help from those of you who have 'been there done that'.

Sophomore year and forward were the worst years of my life until I graduated. I'm a straight A student; never had any problems learning, studying, etc. I always understand the material, but it does become a problem when you are so ill you miss several, several days and subsequently, the teaching of the material. I know college is a whole different ball park, but how did those of you who've also been sick during those times handle it? I get the idea that it will be a repeat of my high school years and if it is, college will literally be impossible for me unless I'm largely symptom free (haven't been for almost 7 years now, since the onset of all the diseases). I missed a lot of class, and no matter how hard I tried to work with my teachers, 90% of them literally did not care about me or my education and wouldn't help me at all. I lost my lifelong dream of being being valedictorian, among other things, because I simply could not get the majority of my teachers to work with me or help me at all. I would miss class and they would expect me to magically know the material or gather it from my classmates (None of which knew anything or cared about school in general). How did you approach your professors? What steps did you take to make it easier on yourself?

And about jobs. I don't have one yet, other than what I do myself. How did you go about explaining your health to your employer, without scaring them into thinking you were some sort of hypochondriac or that you'd constantly be slacking/taking off for no good reason? I am a hard working girl, especially if I know it's my responsibility. However, I know there will be days were I will be sick and I simply won't be able to function normally, as well, or even at all. I don't know how to get it across that I'm not going to just slack off all the time or take advantage of them.

A premature thank you to anyone who replies in all seriousness.
 
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.
 
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Thank both of you. Gryeyes, I'm glad you beat it. I've lost two friends to breast cancer, and if your struggle was like theirs was it takes someone strong to overcome it and have anything left of themselves. I can understand that... I feel like much of my remembered life has been "Do I go and try to muddle through it or do I stay home and get through the pain?"

chickened, I seriously considered that... My lifelong dream was to become a veterinarian... I'm unsure if I could find a government based veterinary career, but it would make me happy.
 
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.
 
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.
 
Trefoil said:
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.
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My parents are struggling to do this right now. I've been to some of the top pediatric gastroenterologists in the country... Vanderbilt, Cleveland Clinic, Cincinnati Children's Hospital. Our next stop was Mayo clinic, but before that can happen, they'll have to pay off the other bills. No, I don't, but I'm beginning to think I'll never have any real answers. The only problem with most of my major diseases, there are no cures. Most of it is symptom management (that doesn't manage very well).

Mulewagon, and everyone else, thanks. I'd previously considered pathology. I'd thought about doing such things on the side, as well as breeding, but the only things that make me wary are the PR and being at the mercy of the market. I'm trying to break through in the local photography market and I'm not sure if I'm just not advertising hard enough, but my work is decent at least and I'm getting nothing.
 

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