Any other rebels with chronic illness or disabilities?

[alr]

I just wanted to check and see how many of us are rebelling against a bit more than just sedentary lifestyles and the standard American diet.

I have two autoimmunes, ulcerative colitis (so severe that I lost a huge chunk of my GI tract just over a decade ago) and primary sclerosing cholangitis, and occasionally get so jaundiced that getting out of bed is an epic quest, let alone getting out of bed ready to move some iron. It makes challenges challenging when I have to try to finish them from the hospital or with liver enzymes over ten times the norm. Not to mention the fact that repairing my digestive tract has left me with enough abdominal scars to make Frankenstein shudder.

Health consciousness has done a lot to make the situation less terrible, but the fact is that I was a health nut BEFORE I got sick, so getting to deal with people's ignorance about chronic illness (i.e. the myth that positive thinking, stress management, better diet, you name it) would have prevented the illness in the first place) can be another heavy burden when dealing with people who got luckier genetically.

If I can go to work, take care of my kids, and still have energy to work out regularly, I feel like my body is pretty amazing and wonderful whether it looks like anyone's ideal or not.

Anyone else?

[diableri]

I was born with lung problems. Both anatomical and auto-immune. Many years now of corticosteroids have hurt my joints to the point of being forty and starting to plan for a shoulder replacement within a decade. My scars are only tumor removals and trachs however (so far, thankfully).

It has been very difficult trying to explain why I have to go slower sometimes to less familiar friends and family who haven't been close enough to know about all the hospitalizations. I try very hard not to complain or to "give voice" to my problems but unfortunately the older I get, the more necessary it is. I HATE using O2 in front of people I don't know or in public as well as carrying around and using my nebulizer for hand mixed treatments. I am never treated the same way again after people hear and see me having trouble breathing and at the worst they panic and cause a scene. On the upside, I have a gigantic chest already without any work from the COPD. =p

Wear your scars proudly friend and make Frankenstein shudder when you roar!

[RealMenRealDads]

I can sympathize because my five year old son has type 1 diabetes and a blood disorder called ITP. I also was injured in Iraq and have to do all exercises around a severe back injury and knee injury. I figure if I can stay in shape and lead a healthy lifestyle, my son will benefit from it, learning how to be healthy himself!

[alr]

I was born with lung problems. Both anatomical and auto-immune. Many years now of corticosteroids have hurt my joints to the point of being forty and starting to plan for a shoulder replacement within a decade. My scars are only tumor removals and trachs however (so far, thankfully).

It has been very difficult trying to explain why I have to go slower sometimes to less familiar friends and family who haven't been close enough to know about all the hospitalizations. I try very hard not to complain or to "give voice" to my problems but unfortunately the older I get, the more necessary it is. I HATE using O2 in front of people I don't know or in public as well as carrying around and using my nebulizer for hand mixed treatments. I am never treated the same way again after people hear and see me having trouble breathing and at the worst they panic and cause a scene. On the upside, I have a gigantic chest already without any work from the COPD. =p

Wear your scars proudly friend and make Frankenstein shudder when you roar!

I totally hear you on not being treated the same ever again. Figuring out when and if to disclose is so tricky. I have already outlived my initial prognosis, so by my standards, I'm doing great, but I get a lot of 'should you be doing X,Y, or Z?' which is really irritating. YES. I should. I only get one life and I'm not going to throw more limitations at it than I already have. On the other hand, occasionally I hit a wall and really can't do something, and sometimes it is something I could do just a few months before.

Getting sick and wasting and then recovering and getting back in shape and then getting sick again makes for really slow progress. Having people act like I should not even try because I have a handy excuse to fail and give up is really annoying. I AM having to take things a little easier these days because years of poor liver function have given me osteopenia. I really messed up my ribs falling off a porch a couple of months ago and couldn't afford to go to the hospital, so my rib cage is extremely lopsided now although from the recent lack of pain, I think whatever was broken or dislocated has healed enough to go on with lifting again. I really want to join a fighting gym but am afraid my bones can't take the impact.

Corticosteroids vs. joints is awful. They were concerned I was developing necrosis of the hip right before I had to have my colon removed. It was a tough call but losing a bunch of intestine seemed like a safer bet than staying on prednisone. ONLY tumor removals and trachs, my foot. Those are scars to wear proudly too! (Mine are a hernia repair, where I had to have an ostomy for a year, and a foot long one from removing my colon and two children.)

[alr]

I can sympathize because my five year old son has type 1 diabetes and a blood disorder called ITP. I also was injured in Iraq and have to do all exercises around a severe back injury and knee injury. I figure if I can stay in shape and lead a healthy lifestyle, my son will benefit from it, learning how to be healthy himself!

Healthy becomes a relative term, doesn't it? You are definitely setting a good example for him. Seeing you overcome will teach him that he can overcome. When I was first diagnosed with everything, I had no role models and let myself listen too much to doctors who encouraged me to take it easy; I was afraid my body wouldn't be able to handle all the lifting and running and other stuff I had always been able to do before. I really regret those wasted years. Your son is so lucky.

[spezzy]

it's not overly serious, but im anemic.

boys: warning, the rest of this post is girly in nature.

it gets really bad during "that time" of the month to the point where i've just completely passed out from time to time.

and lifting any sort of heavy numbers really isnt an option (if you look at some of my past numbers, i get really weak about once a month)

BUT, i got an IUD like 3 months ago, with the idea that it will reduce/eliminate that time of the month, which will help my iron levels.

And the longer I go without gluten, the better I seem.

So I may be curable

[thescrawnycaveman]

I'm fortunate enough to say I don't have any major health problems (unless you count not being able to gain weight for my life), but I wanted to pop in here and say how inspiring some of these posts are. So many of people like me (and including me) will fall back on excuses why we can't workout or why taking one more day off is excusable, and you guys keep fighting despite your setbacks. It really reminds me just how lazy I am. So good job guys! Keep up the good work and keep up the fight! (DROWN YOUR DISEASES WITH MUSCLESSS!!)<----Imagine with swartzeneger voice

[Crooked]

I feel like I don't count compared to those of you with more serious illnesses and disabilities, but I have IBS and PCOS (and chronic hypoglycemia - one of those weird body things). Neither of them really impairs my ability to exercise, and I've found that my symptoms have been dissipating with a paleo diet.

alr, you are amazing to have gotten through what you have, and your attitude is inspiring!

[alr]

I feel like I don't count compared to those of you with more serious illnesses and disabilities, but I have IBS and PCOS (and chronic hypoglycemia - one of those weird body things). Neither of them really impairs my ability to exercise, and I've found that my symptoms have been dissipating with a paleo diet.

alr, you are amazing to have gotten through what you have, and your attitude is inspiring!

I get hypoglycemic really easily too. I think it is because the liver stores a particular type of sugar and my liver is a mess, but no official explanation has ever been given to me. I am not amazing really. I just get up and do what anyone else does: work, play, etc. What is amazing is what every human is capable of when given no choice.

Don't downplay IBS. It's no fun at all. UC is pretty close to the same thing, so I totally get what you deal with and wouldn't wish it on anyone. What is PCOS?

I have noticed that the paleo diet is very close to the specific carbohydrate diet, which is supposed to help IBS and other autoimmune gut issues. I can't manage paleo but am thinking about going to the SCD since the only grains that seem to agree with me are corn and rice (and I LOVE absolutely anything made with cornmeal). It's interesting to hear that going paleo helps your IBS. I hope it keeps helping!

[Crooked]

@alr

My brother has Crohn's disease and went on SCD for a while before switching to paleo. I think the issue for him was that it made his digestion TOO good - solid waste was too solid and therefore irritated his already irritated intestines. I think he did feel a lot better on SCD, though he is thriving on paleo.

PCOS = polycystic ovarian syndrome

(somewhat girly stuff follows)

I went about a year without getting getting a period and had issues with acne, weight gain and glucose levels. I went to my OB/GYN and she said something to the effect of "everyone's body is different and maybe your hormones are just out of whack for no reason." I had heard about PCOS and thought my symptoms seemed to match, but my gyno said that if I did have it, mine would be a very atypical case, since I'd only gained about ten pounds and my glucose levels were too low, not too high. I insisted on getting a bunch of blood work and a pelvic ultrasound, and they found that my estrogen was at a post-menopausal level (which was a pretty scary test result to get) and I had a bunch of cysts in my ovaries. I'm now on the pill to treat the symptoms, so I don't know whether my new lifestyle has had any effect. If you Google "paleo PCOS," though, there are a lot of stories of women who have had success in treating their PCOS (which is associated with insulin resistance) through a paleo diet.

[RealMenRealDads]

Thank you. You made my day, because this is exactly what I am for... to give my son as many opportunities as I can. I think we all listen to doctors too much. My wife told me via Skype yesterday that the doctor said "If you're worried, bring him in" in reply to her asking about a specific symptom. I told her that it was a cop out on the part of the doctor, because obviously the doctor saw nothing worth worrying about... but had no qualms taking our money.

[RealMenRealDads]

it's not overly serious, but im anemic.

boys: warning, the rest of this post is girly in nature.

it gets really bad during "that time" of the month to the point where i've just completely passed out from time to time.

and lifting any sort of heavy numbers really isnt an option (if you look at some of my past numbers, i get really weak about once a month)

BUT, i got an IUD like 3 months ago, with the idea that it will reduce/eliminate that time of the month, which will help my iron levels.

And the longer I go without gluten, the better I seem.

So I may be curable

My wife's best friend actually has a similar problem with anemia. I feel for you. I really hope that it is curable or that you are able to manage!

[kahn265]

it's not overly serious, but im anemic.

Me too. Furthermore, I'm currently fighting Osteopenia

Back in 2004, my now EX forced me to get roux-en-y gastric bypass surgery (I should have just told her to F*** off right then - it would have saved me a lot of drama).

While the weight loss has solved many problems, many others have cropped up. Currently, anemia and osteopenia are the two sith I'm fighting against the most.

My most recent bone density tests show that my bone density hasn't improved, so I'm now cutting out caffiene and soda in general. Yes, right now, my head is pounding and I'm ready to kill. I'm also looking over my diet to see if I can further tune it to help these two issues.

[diableri]

Thank you. You made my day, because this is exactly what I am for... to give my son as many opportunities as I can. I think we all listen to doctors too much. My wife told me via Skype yesterday that the doctor said "If you're worried, bring him in" in reply to her asking about a specific symptom. I told her that it was a cop out on the part of the doctor, because obviously the doctor saw nothing worth worrying about... but had no qualms taking our money.

I've been in clinical medicine for 21 years now and I think there's an important distinction with the bolded bit. Modern Medicine will save your life 99 times out of 100 in an acute siutation. The quality of that saved life is however up for grabs. Many times the treatment of a disease or injury is quite rough, but patients survive more often than not by a large margin.

It is my sincere hope that now that we (modern medicine) have a good grasp on acute illness and injury, we begin to focus on chronic illness and injury. Modern Medicine has been preoccupied with keeping people from dying because let's face it: what good is being able to walk, run, have sex or coherent thoughts if you are dead?

So listen to your doctors, but question everything!

"I know that most men, including those at ease with problems of the greatest complexity, can seldom accept even the simplest and most obvious truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues, which they have proudly taught to others, and which they have woven, thread by thread, into the fabric of their lives." Tolstoy

"A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents die and a new generation grows up that is familiar with it." Max Planck