Anyone else dealing with chronic illness/disease?

[Aimeedyan]

Originally posted by herc
Aimeedyan and liznboys
,


May I suggest reading The Makers Diet.

http://www.amazon.com/exec/obidos/t...f=sr_1_1/102-7346483-9307354?v=glance&s=books

The man who wrote this overcame Crohn's disease after he had tried everything else. He was down to 104 lbs and near death. This book is about what he did to turn things around.


You may find it helpful. I am reading it now and it is very good. While I don't suffer from Crohn's, there is much in this book that everyone could benefit from.
I don't own stock in the publishing company or anything I just like the book and thought it might help.
Please take this post in the manner it was meant.
I hope you are on the road to recovery soon!

I actually do have that book, and have been recommended by others to read it as well, and I'm about done with it. He has a LOT of good "food for thought" things within it. Though I do believe that everyone responds to different things, and won't completely give up on western medicine because I am responding to it, I think there is something really to be said for our lifestyles and eating habits - and WHAT we eat. Amazing the stuff we digest for the sake of mass production.

I know many others that don't have Crohn's that are reading it, too, and trying the Makers diet.

Glad to hear you read it too!

 

[luvwinnie]

mmausse, wow, I haven't heard of anyone with such an allergy! I can't imagine how tough it is..wishing you all the best.

 

[GeekChic]

awww, mmausse. i'm so sorry you have to deal with that.

i can relate in that i have so many drug allergies that the doctors think i'm making them up. until they have to give me epi and steroids to keep me breathing! my neuros nurse said she's never seen anyone with so many and that out of their whole huge practice i had more than any other patient they had! it's so frustrating because i found a med that worked really, really well on the pain in my legs that i've had for 18 years. well, three days into taking it, yup, my throat is closing, dh rushes me to the doc, epi, solumedrol with prednisone chaser later they say "well you can't have that again!"

to those who ask how not to get depressed...well, for me, i can't. depression has been another condition i've delt with since adolescence, and MS causes it too as does dealing with any chronic illness...i literally take things an hour at a time sometimes and i do all i can to distract myself from the pain; fortunately i still have my sense of humor, and dh and i try to laugh.

example; when i had an ms attack that put me in the hospital (they thought i was having a stroke) it was the one that led to my diagnosis; my whole left side was useless. my facial muscles wouldn't stop jerking, i could barely talk and slurred badly.

well i'm in the hospital, and i look at him and i start singing to the tune of the Itchy and Scratchy show theme song, "i jerk, and twitch, and jerk and jerk and twitch.." and he said "that's not funny, honey," and I said "yes, it is and you'd better laugh da**it!" and we both did. we decided then that we could either learn to try to deal with humor or just give up.

believe me, some days i don't smile and i'm not fun lol. but i am so blessed in so many areas of my life...and the rest, well i'm trying my best not to let the jerks get me down, like you said mmause.

hugs to everyone
geek

 

[MeanLaureen]

Count me in with those of you trying to come to grips with losing what your life should have been.

My main issue is Adult Onset Stills Disease, a very rare autoimmune disorder that is best described as a marriage of Lupus and Rheumatoid Arthritis. It has the fever, rash and organ destruction of Lupus and the pain and joint destruction of RA.

Because of the AOSD, I have developed Pluerisy, Fibromyalgia, Acid Reflux and an ulcer.

I also have a rare blood disorder called VonWillebrauns Disease - which is like a hemophilia that affects people of Irish or Scottish decent, and is one of the few hemophilias that women can actually suffer from and not just be a carrier. Because of this I cannot take any medicine that can be considered a blood thinner, like aspirin or ibuprophen. You can see this make treating my chronic pain pretty tricky.

I live on the maximum dose of Vicodin a day, I also have to take amphetamines and other drugs just to maintain a lifestyle that I consider to be a living hell at times.

A lot of people with AOSD have flares for about a year and then it goes into remission. Mine flared in 2000 and never stopped. According to the doctor, it probably won't stop. It will probably be responsible for whatever kills me in the long run (with the organ destruction). I belong to a support group for my disease and the roughest thing is having people your own age when you consider yourself still somewhat young, dying suddenly from this stupid disease.

There are no studies going on for a cure. There never will. It's too rare for a drug company to blow that kind of money. It effects only .000006% of the population. Why the heck couldn't I have just won the lottery instead.

I've always suffered from depression, but because of my chronic illness, it has gotten severe. The doctors keep me on a close watch because of the amount of stress I'm going through. Some of them say they don't understand how I get up and go to work in the morning. I guess it's the redhead in me.

Right now I am going through a "why me" phase. Why did this happen to me. Right before I had gotten sick, I had built up my self esteem that was broken down by an abusive husband that tried to put me through a wall. I took up kickboxing and quickly started advancing through the belt levels(gotta love long legs..lol), dated a bunch of guys, met, fell in love with and married Matthew in a 9 months span and then 6 months later - bam. My "life" I worked so hard to get back was taken away again, but this time by a disease instead of by a controlling person.

I think I cry daily. My car ride to work is normally my chance to cry. I know you might be thinking that I am just feeling sorry for myself, but I have to get it out. I'm in severe pain every living breathing moment. I miss the old Lauri... the one that liked to kickbox, ride roller coasters, play laser tag like I was Rambo ,draw, paint, run.. have fun. Now I'm just a shell of a person that goes to work every day to make enough money to pay for my 28 daily pills, then I come home, take a bit of time at the computer, go to bed and start it all over from step one.

I can't help but feel bad for what I've done to our marriage and how ripped off Matthew must feel, getting stuck with what I've become.

I don't think I'll ever come to grips with my reality.

 

[Figaro]

One of the harder things about getting used to living with a chronic condition, is having to grieve the life you did have and learn to accept the life you now have. And the closer you are to the time period when you can remember what it was like not to have that particular illness and/or pain, the more difficult it is, because those memories of feeling whole and healthy are so vivid and real. Eventually those memories do fade, and that actually makes accepting stuff a bit easier.

A book that I recommend is: "Living Well With A Hidden Disability" by Stacy Taylor and Robert Epstein is especially good, as it covers arthritis, migraines, colitis, asthma and most of the other long term chronic conditions.

 

[crazelion]

went through SOOO many tests before I was diagnosed with IBS and acid reflux (both...I don't think they usually come together but for me they did) and it is awful. I take Zelnorm (sp?) and a generic that I can't spell to deal with them.

Me and Mom have IBS to and it's embarressed. We both on meds for it and has help alot.

 

[disneygals]

hugs to all of you!!

 

[grinningghost]

It's really therapeutic reading everyone's posts. Not that it's good that everyone has chronic illnesses, but that so many people suffer (many times silently like myself) and can relate to one another.

I have, drumroll please...

MS, Severe Depressive Disorder, Anxiety Disorder w/ panic attacks, migraines, herniated cervical discs, Kerataconus (a rare eye disease), cystic acne - and I think, for now, that's it.

The hardest one for me to come to grips with, believe it or not, was the depression. Even worse than the MS. It's such a black, ugly world that you can't escape no matter what you do. Watch TV, see a funny movie, play with your kids, nothing helps it. You cannot escape your discombobulated brain chemicals. And that's rough.

BUT - thank God for wonderful prescription medications that can help drag you out of that black world. I know I will be on them for the rest of my life, but I would much prefer to swallow a few pills each night than suffer from severe depression unnecessarily. Until someone has been there, they can never understand it. And I pray each day my own daughter doesn't inherit it from me.

Thanks guys. You helped me vent a little. And I will continue to keep all of you in my thoughts and prayers. Together, we can help each other hang in there.

 

[GeekChic]

(((grinningghost)))))))))

hugs!

i know what you mean about the depression being harder to live with than the MS sometimes...believe me. i used to have horrible panic attacks during my first marriage, i usually only have them now still when dealing with my ex. they are horrible.

((((((((((hugs to all the brave ladies here)))))))))

thank you for talking about your struggles, it does help to hear how you all keep soldiering on despite it all. thank you for being so inspiring!

geek

 

[Patty3]

All of you are just wonderful for sharing, I admire each and every one of you. I have asthma, hypothyrodism, high blood pressure and had been having pain when I would swallow. I had an endoscopy and it was discovered that I have three ulcers in my escophagus. They were all biopsied and came back normal. However, the doctor can not say 100% that there is no cancer. He said that the three ulcers are quite large and that the area he took samples from showed no malignancy, but he can not rule out that another area has malignant tissue. Ulcers in your stomach will not become malignant, but they can in your escophagus. I am on Nexium and I can not take any aspirin type product. I will be scoped again in October and I pray that the ulcers are healing. Ironically, a friend of DH was having the same symptoms for a few years and he was just taking tums. He got so bad in the fall that he finally went to the doctors. He had cancer of the escophagus and died a few months later.

 

[mmausse]

Patty3 - I don't know if you are aware of an over the counter supplement called Acidophyllus (basically its the stuff they put in yoghurt but in concentrated form). It's GOOD bacteria for the esophogus and digestive tract. I take one pill a day. It helps with other things in the body too - I don't suffer from my arthritis as bad. My mother has Barrett's disease and I've convinced her to try it. She has and she has only had to take her Nexium once or twice a week. Her doctor approves of this as well. You can but it anywhere - I got mine at Giant, about $7 for 150 tablets. Just thought you'd like to know.

 

[Virgo10]

Originally posted by missypie
Hugs to all of you. Please share how all of you keep from becoming severely depressed. I don't have a chronic illness, but with all three pregnancies I had 24/7 "morning sickness" for 4 1/2 months. That terrible experience gave me an appreciation of what it's like to just never feel good.

Most of the time I can deal with it. I have degenerative disk disease and rheumatoid arthritis. Because DDD has been a problem for so long, I really don't remember what it's like to have a life without pain. As long as I can get up and move, I feel like I'm having a good day. It's all relative.

Last fall I had a period of nearly 4 months when my pain level was sky high. So now that I'm better, I look back on that and say to myself, "Aww, you're a little bit sore today and you think you can't do anything? Think of last Fall and get moving!" Works every time.

The most important thing to me is to stay rested. If I've had a bad night's sleep because of pain, I nap in the afternoon. Chronic fatigue will make you very depressed.

One thing does depress me and that's the amount of medication I have to take. Between losing my thyroid years 4 years ago (6 pills a day), borderline high blood pressure (1 pill a day), the rheumatoid (6 pills a day) and various stomach, asthma and pain medications, I feel like my whole day is based around which pill comes next. I've pretty much come to grips with all of that but it still makes me angry. A small annoyance in comparison to what other folks on this thread are going through.

Roberta

 

[Christine]

Let's see: about 9 years ago I found out I had thyroid cancer. I no longer have a thyroid gland, but have to deal with the issues of replacing my thyroid hormone. The fun NEVER ends.

I also have acid reflux disease which started after one of my thyroid cancer diagnostics tests (due to being severely hypothyroid), and I have very mild IBS. The sort that makes you spend a lot of time in the bathroom when it hits.

I also have panic disorder/anxiety which is exacerbated when my thyroid levels are off.

Most of the time, I am *not* depressed; however, when any of my disorders rears its ugly head, I can quickly spiral into an awful blackness.

Besides all that, one of my children has severe food allergies (peanuts), eczema, asthma, and panic disorder. He is a full-time job all by himself.

 

[chrissyk]

I also have acid reflux and IBS. For me, they were totally related. I've had chronic diarrhea since I was a child. I was diagnosed with Ulcerative Colitis at 17, although the Gastro told my parents that she wasn't 100% sure that I had it. I never thought that I had it, but I knew that I had something.

Fast foward to age 30, 2 gastros later. Suddenly 4 months ago, I started getting nauseous/throwing up/dry heaving at night. I told my gastro, and he thought that the symptoms sounded like acid reflux. He tried me on Protonix, and I felt so much better. I'd always had a strong burning in my throat, but I never told anyone about it. Well, the burning went away on the Protonix too Oddly, so did most of the IBS symptoms. I used to digest food in 4-6 hours, and now I take much longer to digest. That's a welcome change.

Here is the kicker. I was raised not to take medication by my medication-averse mother. I keep trying to convince myself that I don't need the medication. I haven't taken it for 4 days. I've been up since 4AM having every nasty gastro symptom you can think of. I finally had to take Zofran because the nausea was so bad. I'm getting my perscription filled again this morning, and I'm done skipping pills. I have had a hard time coming to terms with being on a medication long-term, but last night was just the last straw. That is the last night that I ever want to spend laying on the bathroom floor!

 

[MeanLaureen]

Crissy - that Protonix is some good stuff, isn't it?

When my Reflux gets really bad I have trouble breathing and feel like I'm having a heart attack. One pill and a few minutes later it starts to go away. Much better than Nexium and Prevacid which I have tried in the past.

 

[vettechick99]

to ALL of you with chronic illnesses. My mom was just diagnosed with Crohns and its very likely I'll get it in the future. I know its hard for her and keeping her stress level down always helps the flare-ups.

I don't have any advice, just know that we are here for you!

 

[BabyTigger99]

Okay, here goes my story...

1989 - I am in 7th grade. Slept over at my cousin's house one weekend, and I was up all nght with severe pain in my leg. Went to school on Monday, which was awful. Not only did I have the pain in my leg, but I could put any pressure on it, so I dragged it behind me when I walked. Tell me I was not the biggest dork at school! After a week of tests, I was diagnosed with a Giant Cell Bone Tumor the size of a softball on my sacrum. Luckily it was begnin, but I had to have 3 surgeries (including one at the Mayo Clinic) within the span of 8 months. Had follow up on it for 5 years, nothing ever happened again.

Fast forward to 1995. Just starting my sophomore year of college. Started getting pain througout my whole body. Got to the point where I could barely walk down the hall in the dorms or get to class. Last straw came when I sprained my ankle in my Military Science class. I called my parents, and sobbed for them to come take me home. After a doctor's appointment that lasted 4 1/2 hours, I was diagnoses with JRA (juvenile rhumetoid arthritis). Had to drop out of college (my school was about 2 hours from home), and move back home. Some mornings I could not even get out of bed, the pain was so bad. Knees even swelled up so much I had to have them drained and injected with cortisone. Can you say painful?? I was on massive treatment for 2 years. After that, all the symptoms pretty much went away. To this day, the doctor (who is my son's pediatrician) is totally mystified as to how I don't have any problems with it, considering how severe it was at the beginning. The only residual effect I have now is a little pain in my hands and wrists sometime, nothing that a few ibuprofin won't cure.

Last fast forward is to August 2003. Pain is back in the leg. I thought it was due to a major increase in exercise. Bothered me for about 3 weeks before my mom convinced me to go to the doctor. She didn't want a repeat of 1989. Went to the doc, they thought it was my sciatic nerve. Gave me stretching, sent me on my way. Pain kept getting progressivley worse. And then, I found a bump above my knee. Went back to my doctor, who sent me to a specialist 2 hours away. Had a biposy, and was diagnosed with Non-Hodgkins Large B Cell Lymphoma on August 28, 2004. After 6 times of chemo, one bout of pneumonia, and 25 days of radiation, I am (tentatively) in remission. We will hopefully get the big R (remission) at my next appointment in October.

So I know all about chronic disease! My DH thinks it is funny that I never really get colds or anything. I always tell him I like to think big when it comes to my disease!!

 

[grinningghost]

More hugs to all. DISers are a tough bunch.

 

[Kristi1357]

My heart goes out to all of you dealing with such major illnesses! You've all made me appreciate my minor chronic illnesses much more.

I've got a laundry list of medical issues: asthma, allergies, eczema, achalasia, GERD, hypothyroid, lymphodema, etc. I think I deal with them better than some since I had a TE Fistula repair (my esophagus had to be sewn together) at birth. At the time it was only a 50/50 chance that I would live. I have had esophageal & swallowing problems my whole life due to this. This is probably why taking meds is not a big deal for me - I've always had them to some extent.

Getting diagnosed with Lymphodema a couple years ago was tough, but bearable. Mine is a very mild case and I only have to wear my compression garment on my left arm when I fly, or have swelling. Most people with this have to wear theirs all the time.

Again, my problems are very minor compared to others, and for that I am very grateful!

 

[Patty3]

In reading these posts, I am just overwhelmed at the courage and support present.
mmause, I did not know about this supplement. I will definitely check this out. How is your Mother doing with Barretts. This is what I thought I had, and only time will tell. How often does your Mother need to have an endoscopy.
Christine, I wonder if we see the same Endocrinologist. I believe that you said you walk in Montclair. I would love to meet you!