miocean

I Met A Man...but not what you are thinking!

15 posts in this topic

I recently returned from a 2,400 mile round trip road trip with my husband to attend the wedding of a good friend's daughter. It was wonderful, a country barbecue, very different from the over-the-top extravaganzas held where I live. This trip would have been impossible for me in the past, between fatigue and dialysis and I am thrilled that I was able to do it!

 

At the wedding I met a man I had heard about for years through our friend and other mutual friends. The stories I heard were very interesting. I knew he had his legs amputated and had a handicapped accessible van for his wheelchair. I knew he was a heavy smoker and spent the morning rolling cigarettes to smoke all day. I knew he was a heavy drinker and partier. So you can imagine the tales that were told...man in a handicapped van driving down the road drinking and smoking.

 

What I didn't know was that he has scleroderma. Besides both legs being amputated below the knees he only has his thumb and pinkie on his right hand which he uses to control his wheelchair. He has several fingers missing on his left hand at different joints and has a colostomy. We did not discuss anything at the wedding except for him saying "I heard you have had a rough time, too." Later I learned more through talking with him and our good friend and was able to put these pieces together:

 

He was diagnosed in 1995 with scleroderma because of finger ulcers . He doctors told him he would have to quit smoking and out and out refused to. One of the first doctors he went to would not treat him and told him he would not be the one to cut him piece by piece if he did not stop smoking. He has had multiple amputations, upwards of more than 20. He has had to have sections of his colon removed, therefore the colostomy.

 

He spends his morning rolling his cigarettes for the day, equal to 2-3 packs. How he manages to do this the way his hands are is beyond me! How he manages to hold a cigarette is beyond me as well! He is incredibly mobile and maneuvers his wheelchair everywhere, even over very bumpy ground, with a beer in his left hand (what is left of it.) He has painted his fence red, white, and blue by himself and takes great pride in it. Again, I marvel at how he holds a brush! He has a prothesis for his leg so he can drive his van. He has a great sense of humor and a positive attitude, he dwells on what he can accomplish not on what has been taken away from him. Not once did him complain. He was always smiling (could be the beer :D .)

 

It was inspiring and very, very sad at the same time. :crying: The people around him who love him, his friends, wife and family, are watching him destroy his body in addition to what the disease does. He has a wonderful spirit but his addiction has taken over.

 

 

For me, there are several lessons to be learned from his story:

1. It is possible to face adversity with a positive attitude.

2. Even with major physical limitations, you can do the things you really want to do.

3. Be compliant, especially about the things you know will control your disease.

4. The choices you make affect the people who love and care about you.

 

Just had to share...

 

miocean


ISN Artist

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Hi Miocean,

 

Thanks so much for sharing this story with us. :)

 

It's interesting about the smoking; I don't want to sound sanctimonious, but it reminds me of one occasion when I went for a consultation at The Royal Brompton and as I was leaving the hospital there were two or three of the 'inmates' standing just outside with cigarettes in one hand and wired up to oxygen cylinders on the other side.

 

I spoke to one patient and the following conversation took place:-

 

Me: (incredulously) "You're standing outside a lung hospital and smoking?!" :emoticon-dont-know: :o

 

Patient: (sheepishly) "Well, I have got my own ashtray!"....

 

Me: (sarcastically) "Oh well, that's alright then!" :blink: :lol:

 

Kind regards,


Jo Frowde

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I was a long-time smoker so I understand the addiction. And when I finally quit and didn't feel one bit better (despite what my doctors promised) AND I gained 20 pounds, too, I wasn't thrilled, to say the least! What kept and keeps me off the ciggies, then, is the cost savings. I enjoy having the extra money to spend on better things and I also like not having my person, home, and car smell like stale smoke.

 

More importantly, however, is that the time is coming when smokers won't get the treatment they need. Doctors and hospitals will refuse to invest time, money, and care on those who smoke and, also, on the obese. I know this sounds harsh but it's already happening in some places. When I had my cardiac ablation earlier this year, my cardiologist said I was considered a prime candidate and they would book the procedure right away because I eat well and exercise, I don't smoke, I'm young enough, and I'm compliant with my medical care. He said the hospital has patient criteria in place and this particular hospital won't hire anyone who smokes or is obese, either.

 

Some of our local orthopedic surgeons have a weight limit for performing surgeries! I have a very large friend who told me she was embarrassed to learn she just barely made the weight limit for arthroscopic knee surgery! I have repeatedly invited her to come over to my house and exercise with me since she's ashamed to go to a gym but she's never shown up. The hospital is going to start charging their employees who are heavy or smoke more each month for their insurance premiums.

 

We're heading for healthcare rationing and widespread policies like this here in the U.S. I think that people like this gentleman need to consider what they're going to do and what their decisions will mean to their families. I'm a bit worried myself because if penalties are incurred solely based on the BMI, then I could be in trouble. I'm larger-framed and muscular so I weigh more than the ideal for my height. I could be characterized as substantially overweight even though my stomach is flat and there isn't any flab on me!

 

I'm so glad you had a wonderful trip and a renewed sense of freedom! Enjoy!

 

Julia

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What a great story Miocean. Addiction is a very tug of war illness. Once you win the battle you realize all the benefits. It is easy not to work at giving up something you think you are really enjoying. Saving the money in a jar or box can be one of the biggest motivations. You get to start listing all the things you may want to do with it or reward yourself weekly then monthly then something special the next year. Motivation is a hard thing to talk yourself into, be it exercise or quitting the habit. Most of us have family members that struggle with some type of addiction. It truly is hard to watch them slowly destroying their bodies.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hello Miocean

 

Wow! I have to say, if I was still smoking (from age 19 to 23) when diagnosed with scleroderma I don't know if I would have given up.

 

Interestingly my mother, 20+ year smoker, gave up cold turkey after her first heart attack and became a vehement ex-smoker. When she was a patient at the London Chest Hospital my sister and I marvelled at patients standing around outside smoking and the relatives joining in!

 

Do you know why he had his legs amputated?

 

Take care.


Amanda Thorpe

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Hello Julia

 

Surely it's discrimination to not hire an obese person and I dare say a smoker? What follows this, targeting disabled people, because that's were this sort of behaviour ends up. Discrimination cannot be contained and when we start discriminating against once group before you know it every minority is under the cosh followed by anyone the majority doesn't like.

 

As for obese and smokers paying more for life insurance, what about other addictions? If you don't include all it's not fair, so what about alcoholics and drug addicts?

 

Obesity is based on an addiction to food, smoking an addiction to nicotine and so forth but whereas smokers can stop smoking and alcoholics stop drinking, obese people can't stop eating. Imagine saying to an alcoholic, here's a bottle of wine but you can only drink half of it but that's what we say to the obese.

 

What help is given to obese people? There's loads of help here in the UK, through the NHS, for smokers, alcoholics and drug addicts but what about the obese? If your going to make them pay for their addiction like smokers you have to give them the same level of help and here in the UK I don't think we do.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

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I know that your weight and smoking can make you unable to have a kidney transplant. I met a beautiful, incredibly inspiring woman while on dialysis. She is extremely overweight and was denied a transplant because of it. She had lost 100 pounds when she told me this. Upon my return to the dialysis center, she had lost more weight but was still not a candidate. She has been on dialysis about 10 years now, teaches full time and sits in the dialysis chair 3 x's a week for 4 1/2 hours. She has watched other people in dialysis who she knows are non-compliant with their diet (diabetics) who get transplants and some end up returning to dialysis. She hopes to make it until her son graduates from high school. I also heard of another person who was actually at the hospital for the transplant and when they found he had not stopped smoking sent him home.

 

They check very carefully to make sure you are compliant with your treatment before they will give you a precious organ. There are too many people waiting for one.

 

Teatime,

I understand your concern because doctors are always noting that my BMI is too high. It always has been, even when I was running, weight-training, doing yoga, swimming, etc. Some people are just built that way.

 

Amanda,

I agree with you about the obesity issue. With other addictions you can stop but with a food addiction you have to let it out at least 3 x's a day. I have discovered I have a problem with sugar and I cycle into periods of eating it almost uncontrollably but that is something I can say no to. And I don't know why this man's legs were amputated but it is probably from ulcers. I knew several people in dialysis who had amputations due to diabetic ulcers.

 

I look around at the people in my area and marvel at how incredibly obese they are. If you are old enough to remember some television personalities from years ago we thought they were so fat yet by today's standards they look rather normal. Knowing that I don't eat that much and still have a weight problem I wonder how anybody can eat that much and am beginning to think it is more than food consumption, that perhaps the additives and preservatives in our foods today are creating part of the problem. Along with the incredibly HUGE servings at restaurants, high fat and high salt content.

 

miocean


ISN Artist

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Hi All,

It is interesting isn't it, how our bodies work both with us and against us sometimes. I have a friend who I have known for nearly 20 years. She has always been large, I wouldn't say obese but big enough to have given her grief over the years. She has had similar sorts of health problems to all of us. In her younger days it was found that she had polycystic ovarian disease and I think had a Hysterectomy including removal of ovaries. She and her husband adopted two children (as we did too) and now have several grandchildren.

 

About 10 or 12 years ago she came into the room one day with a huge grin and announced that she had just been diagnosed as diabetic. Hardly a cause for celebration but in her case it explained all the unpleasant things which had been bothering her since the previous surgeries. At least she had a reason for all these nasty things and could deal with them now. One thing she hasn't been able to conquer is her body weight. Eventually her doctors told her that there is nothing she or anybody else could do about it. As long as she follows her diabetic regime and keeps as fit as she can that is all that can be expected.

 

So I have to agree that there are some things we can control and some we can't. Discrimination on grounds of BMI or whatever you like to measure it by can probably never be justified.

 

Like you, I sometimes wonder how people eat as much as they do, but that is the way it is and if we all did exactly the same thing every day what a dull world it would be. Not only that there would be nothing for us to discuss and ponder about would there.

 

Love and best wishes to you all,

Judyt

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I hear you on the BMI! While I have been okay in terms of BMI (although if I ever allowed myself to lose enough weight to reach the bottom of my "acceptable" BMI, I would be much too skinny, and haven't been that weight since I was about 11 or 12!), there are definitely some people out there that no matter how little they ate they just wouldn't get into that acceptable range.

 

So for them, as long as they were eating properly and exercising, they should never be told they are overweight. Sometimes your body dictates what is overweight for you.

 

I'm the opposite. I have actually lost weight, and my husband is commenting how I'm getting too thin, but I'm a junk-food-aholic and a chocaholic. I know they're no good for me, but I have no appetite for anything healthy. I'm guessing it's a combination between some scleroderma-stuff happening to my digestive system and my muscles (since muscles weigh more than fat), my fatigue, in which case I'm probably eating sugar to try to gain energy (I know, not a good way!), and just plain having lost the taste for good food because I've had too much of the bad stuff.

 

But I just can't get back to the good stuff.

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Amberjolie, somebody (actually that person is a nurse) said to me once that I should eat what I feel like. No good forcing down something you don't want, particularly when we have a lot to cope with anyway.

 

Give yourself a break, eat what you feel you want and need and one day you might surprise yourself by wanting Spinach (perish the thought ) or even good old celery or carrots or lettuce!!

 

Love and best wishes

Judyt

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Thank you for sharing this story and I have enjoyed reading all the comments. I have been doing a lot of thinking about these subjects lately as my uncle recently passed. He refused to quit smoking despite his wife's death from lung cancer not to mention his own health issues. We all thought he'd go out in a blaze of glory while lighting up with the oxygen in his nose, or from falling asleep with a cigarette in his hand. Instead he went peacefully in the hospital.

 

Blog fodder for me. Thanks again.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Judyt,

I like how you think. :). Actually, I'll eat a strawberry spinach salad if my mom makes it.

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Amanda,

Our system here in the US is just nuts. Health care here is big business. The hospitals care, I would imagine, about promoting healthy lifestyles but for the insurance companies and for-profit health services, it's all about finding new ways to make more money through surcharges and higher premiums (or not covering medical care).

 

The government sued the tobacco companies and the states were awarded billions of dollars that the companies had to pay for fudging the truth about the effects of nicotine. The money was supposed to be used for smoking cessation programs, medical care, and education programs. Instead, the states used some of it to balance their budgets and pay for other stuff. I wasn't offered any assistance when I quit smoking. I paid for an electronic cigarette kit and supplies on my own and weaned down to 0 nicotine on that, too.

 

I think that people need to make what lifestyle changes they can make, though. The time is fast approaching when the insurance companies won't cover anything unless you do. As I said, I don't know what I'll do if they radically enforce the BMI. I eat super-healthy and exercise just about every day, if possible. I would have to go on a starvation-type diet to lose the 25 pounds I'd have to lose to get the BMI in normal range and much of that would be muscle.

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