Dealing with bad health

[GMFan]

I am a 26 year old who has always taken care of there body with healthy eating, exercise, weight lifting etc.

I have been battling health problems since February and have been to numerous doctors who all tell me something different. I have been misdiagnosed by more than one doctor. I am afraid they really don't know what is going on and basically all they have been doing is caring for my symptoms, not the root cause at this point. I have not been diagnosed with any specific medical condition yet although the doctors caring for me suspect a bowel disease leading to abscesses and other painful complications. I have lost almost 25 pounds and weigh 160lbs and I am 5'11".

I have had some agonizing surgeries and have been enlightened first hand on dealing with the insurance companies trying to avoid paying for anything they can. I also have a high deductible insurance plan. It's a nightmare opening the mailbox waiting for the next bill to come with no end in sight. I have some surgical options but unfortunately the success rate is hit and miss and it can affect me for the rest of my life if not successful.

My conditions are affecting my work and it is hard to focus...additionally the thought of at this point I am simply working to pay for the next painful procedure, checkup or doctor. It is affecting my relationship with my girlfriend but she is supportive and understanding. It's hard to enjoy even fun events at the constant thought of my condition.

I never thought Id be dealing with health issues this early in my life but sometimes you have no choice in the matter. It is a scary experience and it can feel like you a trapped in a black hole while the world is passing you by. It's one thing to deal with something broken or damaged but when it is your body it is the most frightening experience I've ever had.

Does anyone have any advice they can give me on how to keep calm, remain positive and put things into perspective? I am keeping on with my life as normal as I can but it's hard not to be irritable, frustrated and tired. As much as people close to you say they care they don't always seem to understand why you are tired or irritable and can get angry at you and at the same time you cannot blame them if you were in there shoes.

 

[SatinSilver]

I'd say proper diagnosis is the first step by a top tier doctor/hosptial like the Cleveland Clinic. Once the diagnosis has been made then the proper treatment should ensue. I wonder if it's a parasite of some sort.

http://my.clevelandclinic.org/health/diseases_conditions.aspx?topic=disorders+and+conditions

Be your own health advocate and don't totally rely on the doctors. Sometimes they have their best interests in mind and not yours.

 

[pottymouth]

I am sorry for your struggle.

People mean well, but they will never really understand what you go though. Don't expect them to. They will also grow weary of your struggles after a while and the support will diminish. Even those closest to you will tire of making sacrifices. Some will suspect you of exaggerating or suggest that you are not doing enough to fix the problem. Then there will be those who will give you unsolicited and unwanted advice based upon what happened to their niece's, roommate's, hairdresser's baby cousin who had the same thing as you. Don't take it personally. Most people simply have little endurance for the suffering of others and will either distance themselves from it or try to diminish it's significance in some way. It's their own defense mechanism.

What you must learn is to become as self-reliant as possible. Take complete charge of your healthcare. Ask as many questions as you need to. Challenge doctors that you don't agree with. Research all medications and medical procedures to your own satisfaction. I grew up in a culture of "doctor knows best" and have had to completely turn that attitude around.

Make sure to care for yourself in every way. Make time to do things you enjoy when you are able. Cultivate new interests. Try to connect with others who suffer with similar health issues if you can find them. They will have useful suggestions for you.

I know it's hard, but try to forget about the medical bills. they will be an unavoidable part of your life for the foreseeable future. They will be there whether you worry about them every second or simply do your best to make payments as best you can.

Hang in there. A big part of health and recovery is attitude. Keeping positive will help you. Focus on the positives and make the most of them.

Good luck to you.

 

[doitmyself]

Oh my, I am so sorry to hear of your difficulties. I can empathize because my wife is in the same boat after her car accident 5 years ago. Except, we have the luxury of good insurance. Yes, sometimes life intervenes and you take a turn no matter how conscientious you live. Even with "excellent" insurance, it is still a nightmare.

Excellent answers above, especially about being your own advocate. It is a must.

I have nothing else to add. Maybe see a counselor/therapist to deal with your feelings. It's not shameful to seek professional help for dealing with the mental challenge of handling extreme hardship. Extreme stress as you are experiencing can "short circuit" your brain function in a physical way and lead to a downward spiral. Trying to pull yourself up by the bootstraps can sometimes be like telling an asthmatic to just think his way out of the difficult breathing. Many don't understand this.

My best to you.

 

[Brule]

GMFan, look into a macrobiotic diet. Read about it first then try it. If it doesn't help then no harm/no foul. It's ultra old school, all whole grains, beans, some fish, locally grown vegetables, and organic is preferred. Avoids sugar, milk, refined grains, meat, nightshades, spicy, etc. Even if you can't go all the way with it, you can try certain aspects of it and the effects could be noticed not overnight, but certainly within a few days.

Almost certainly this is a diet issue and Western doctors are primarily schooled on drugs, not diet. That is why they can't really help you. I had a serious health scare years ago and my stress and panic led me to macrobiotics. I am not 100% practicing anymore, but do come back to it constantly.

 

[Stelth]

Oh boy. Sorry to hear about this. I'm 55, and beginning to have some health struggles, but it sounds like what I'm going through is more manageable.

Being your own advocate is excellent advice. Ask questions. It's your health, and your life. Don't let doctors and medical people push you around. Search the internet and read up on conditions related to your symptoms. It's OK to ask your doctor, "Could I possibly have X?" if you think X fits your symptoms.

 

[Sam2000]

You've so far received great advice, let me add some that I hope is helpful.

Firstly, don't work with any doctors who you don't feel is genuinely listening to your unique set of circumstances. What you are finding in terms of point fixes, symptoms vs root cause is our modern flawed medical system. But there are a few doctors out there that truly get it just as there are mechanics.

Secondly, only you know the exact unique circumstances so you are a wealth of information. But when you are too close to the problem, you may not process the information correctly. So try to abstract yourself from your emotions. Give yourself advice like you would give advice to your best friend or a parent.

Thirdly, diet or something in your environment could be a cause. Think through anything that changed in the time leading up to this issue.

In terms of diet, start an elimination diet starting with wheat and then corn. Dairy is another one. Be absolutely sure of the source of your food eg non GMO, organic where possible. Try a week or so as a vegetarian. Is there one particular food that you've always eaten a lot, perhaps too much?

You sound like a reasonable and sensible person. Don't despair, you can get through this. Do some independent research on the condition and reach out to help groups to explore your symptoms further with those groups. It doesn't have to be an exact match. Part of finding out what is wrong is getting information. No information in such a process is wasted as it eliminates root causes.

 

[tightwad]

Originally Posted By: satinsilver
I'd say proper diagnosis is the first step by a top tier doctor/hosptial like the Cleveland Clinic. Once the diagnosis has been made then the proper treatment should ensue. I wonder if it's a parasite of some sort.

http://my.clevelandclinic.org/health/diseases_conditions.aspx?topic=disorders+and+conditions

Be your own health advocate and don't totally rely on the doctors. Sometimes they have their best interests in mind and not yours.


Excellent advice from all, but this one hit home with me. My mother suffered with a parasitic infection for years. Most doctors have little curiosity or ability to think outside the box. Cleveland Clinic would be excellent or someplace that has a national reputation. Travel costs will be forgotten after you've gotten the proper treatment.

And, yes, do your own research. WebMD is an excellent resource. At least you will be more able to ask questions and understand what doctors are saying.

 

[rjundi]

How far are you leaving the catskills to get care?

My wife anytime something more major comes up we head to Boston nothing local or her own hospital where she works.

Not sure the closest place to you like that.

 

[thunderfog]

Start with the things you can control. No more processed food, keep it natural all around, low sodium, and watch the sugar intake.

 

[Roob]

First and foremost.
Keep your head up and don't give up! No matter what comes round the corner!!!!

Second, being irritated, frustrated, angry and scared, are all completely normal considering the situation you are currently in.

Third. Sorry, it's a long third....
Push your GP, politely but sternly. Ask for specialist referrals and investigations. You want them to work hard for you, but you want them in your corner. Come to the visit prepared so you can justify your reasons. It's also good to bring someone with you to back you up, or help you explain. When you are ill, it is very difficult sometimes to properly explain yourself and medications don't always help with that. You need that diagnosis.....

Fourth...
Research specialists or clinics that have them. The Mayo clinic is one such resource. Check their website below:
http://www.mayoclinic.org

The internet is your friend for this. If you don't feel like doing it for whatever reason, ask for help from family, friends, GF, ask me or any of the members here to do research, if you are comfortable with that.
I'm sure many will help...

Fifth.. This is where I shut my mouth, usually for most, it's the best part...

 

[Mr Nice]

There has to be a G.I. doctor in your area that can pinpoint what's wrong.
I agree that certain foods can cause medical problems.

I can't eat anything with citric acids / artificial coloring.

 

[friendly_jacek]

Health is the most important thing in life.
Even though I work in healthcare, my own/family experience taught me that western medicine is great for acute illness, cancer, or trauma, but very inadequate for chronic illnesses.

If you want to PM with some more info (diagnoses, symptoms, treatments) maybe I can point you in some directions.

 

[Turk]

Have you been to an Asian Doctor & had an Asian style evaluation??

Western medicine ins't everything...

 

[Drew99GT]

I second the idea of doing your own research to find other people with symptoms similar to yours. Sometimes that is the best way to pin down what's affecting you is to find others with similar conditions. There are quite a few health/illness web forums. Just googling your specific symptoms is a great idea to help focus ideas for what's ailing you.

Good luck; I hope you figure out what's going on and are able to treat it in the least intrusive way.

 

[joaks]

Good suggestions so far.

GMFan- can you provide any more detail on your condition? Symptoms and what the doctor says is or is not the problem?

I'm not a doctor but I was trained as a dietitian before grad school. I might be able to give you suggestions of things to look into.

 

[eljefino]

Keep a journal. How you feel. X out of 10. What you eat. What questions you want to ask at your next doctor's visit. What the last doctor said.

That form you fill out in the waiting room, I have found, never gets in front of the doctor. Take control of your visit-- they ask if you have any questions at the end, move it forward.

At some point the high deductible plan starts paying out, then it's gravy. Hopefully you can get some time in this calendar year. I just got into one of these plans when my company was bought by Fred Mertz... I don't yet have the companion HSA filled up and am moderately agitated.

Best of luck!

 

[Papa Bear]

Originally Posted By: Turk
Have you been to an Asian Doctor & had an Asian style evaluation??

Western medicine ins't everything...



Talk to a holistic practitioner and see what they say.
If I am right mentally/emotionally/spiritually I find I am free from most "issues" that plagued me in the past.
All the best.

"It’s supposed to be a professional secret, but I’ll tell you anyway. We doctors do nothing. We only help and encourage the doctor within." – Albert Schweitzer (1875-1965)


Bob

 

[Cujet]

I have an autoimmune disease. As 70% of immune cells are in the intestines, that's where I see the problems first. Nothing I eat changes how the disease acts, and when it acts up.

However, how healthy I behave/eat has a huge affect on my overall health. In other words, a perfect diet is not a solution for me, but it is absolutely necessary for well being and fast healing.

I agree with the above advice. Find a high end hospital, such as the above mentioned Cleveland Clinic and go there.

In my case, there is nothing doctors can do to eliminate the disease. We can only treat the symptoms. I will continue to deteriorate slowly. I've accepted that.

 

[artificialist]

I have been disabled by several diseases. I am 29, and have a long list of problems, but one thing that really upsets me is that I have been to the urologist more than most 45 year old men. When people ask me why I haven't been feeling so well, I say "Do you ever watch the Discovery channel show called oddities? Then imagine being probed by modern versions of those devices."

I don't always handle having all the illnesses well. With so little money, I can't always have a hobby to occupy my mind. Sure, I like working on cars, but I have every car in my whole family up to date with repairs and maintenance. I do like working with computers, but that isn't such a great thing either.

At least I have my family to back me up. They have helped me pay numerous medical bills, and because my mother works for the local school district, her health plan covers many of my bills. Unfortunately, there are more to pay.