Anyone else dealing with chronic illness/disease?

[Aimeedyan]

I'm a bit hesistant to post this... but here goes.

I was dx with Crohn's last spring... though the diagnosis was VERY welcome at the time, it has recently begun to hit me that I will forever be sick, and always drug dependent, and likely face extensive surgeries and such. I know many people are drug dependent, I have been for asthma my whole life, but I'm on an immune supressant now, and have lots of other issues that pop up because of that. Not to mention it being incredibly expensive. I could go on and on but I think you know what it's like...

If you are living with chronic disease or illness, would you mind sharing how you came to gripes with it? Did you go through a grieving process? I feel that's what I'm doing now... grieving over my own body that has let me down. How did your SO (significant other) react? DH and I are struggling to communicate over this added stress. I became sick almost immediately after we married, and we're had a rough first two years because of health issues. He handles things so differently than I do, that we both often feel alone in it. Did you exp that as well? How did you work through those things?

Not sure what I'm looking for... perhaps just to talk with others facing similar issues day in and day out. I don't know anyone IRL that does, esp not my age (26 in a month).

Thanks for listening (and sorry, Pop Daddy, for the long winded post) =)

 

[Chicago526]

I'm not going through it myself, but my father has Parkinson's. He was a little relieved getting the diagnosis, once he knew what it was, he felt better. So far, he is responding well to the meds and can still do everything he wants, but eventually he will have problems. He is very independant, and I'm affraid of how he will react when he can't do as much, or even has to give up driving. Thank heaven, my parents got nursing home insurance. If it gets so bad that my mom can't take care of him, the insurance will provide in-home nursing care or assistance without draining their nest egg.

I know this doesn't help, but I just wanted to let you know that I'm sorry you're sick. I hope you do well!

 

[EsmeraldaX]

Possibly TMI

I 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.

IBS is awful. It mainly affects women and it is one of those things that people don't like to talk about because it deals with icky bodily functions. But for the people who have to live with it, it's awful. Laugh if you want, but you try to imagine what it is like to not be able to go to the restroom when you have to. There would be days when I was in so much pain or my stomach would be so bloated that people would ask me when I was due (I'm not kidding!). It was awful and made me feel horrible about myself, not to mention I didn't enjoy eating because I'd worry about bloating (IBS) and / or extreme pain (AR)

With acid reflux, there would be times when I would be huddled over in pain from the burning feeling. I noticed heartburn meds did not work. Since going on the medication I am taking, I have only had maybe 2 days when I was in pain.

I just stick to my medication now. I was off the IBS stuff for a while but I had to go back on it. I will have to take the acid reflux stuff for the rest of my life.

I found that the one thing that helped was to find other things to do to keep my mind off it.

 

[Aimeedyan]

Originally posted by EsmeraldaX
Possibly TMI

I 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.

IBS is awful. It mainly affects women and it is one of those things that people don't like to talk about because it deals with icky bodily functions. But for the people who have to live with it, it's awful. Laugh if you want, but you try to imagine what it is like to not be able to go to the restroom when you have to. There would be days when I was in so much pain or my stomach would be so bloated that people would ask me when I was due (I'm not kidding!). It was awful and made me feel horrible about myself, not to mention I didn't enjoy eating because I'd worry about bloating (IBS) and / or extreme pain (AR)

With acid reflux, there would be times when I would be huddled over in pain from the burning feeling. I noticed heartburn meds did not work. Since going on the medication I am taking, I have only had maybe 2 days when I was in pain.

I just stick to my medication now. I was off the IBS stuff for a while but I had to go back on it. I will have to take the acid reflux stuff for the rest of my life.

I found that the one thing that helped was to find other things to do to keep my mind off it.

Crohn's is an Irritable Bowel Disease, so I'm very familiar with your struggles... My mom has IBS, but I keep urging her to have more tests run and see if she has IBD instead (many docs just slap IBS diagnosis on people that actually have IBD which is more serious and more work to find, and it usually takes something major to discover it), but she won't... she carries extra clothing with her it's so bad. I've been thankful that my Crohn's isn't played out as much with those symptoms, but most do. I'm glad you've found some meds that work for you...

I have acid reflux, too. Tums are my best friend =)

Thanks for sharing, and it's not TMI for me

 

[Aimeedyan]

Originally posted by Chicago526


I'm not going through it myself, but my father has Parkinson's. He was a little relieved getting the diagnosis, once he knew what it was, he felt better. So far, he is responding well to the meds and can still do everything he wants, but eventually he will have problems. He is very independant, and I'm affraid of how he will react when he can't do as much, or even has to give up driving. Thank heaven, my parents got nursing home insurance. If it gets so bad that my mom can't take care of him, the insurance will provide in-home nursing care or assistance without draining their nest egg.

I know this doesn't help, but I just wanted to let you know that I'm sorry you're sick. I hope you do well!

Thanks for sharing... I pray your father will find adequate (and AFFORDABLE) care as his disease progresses. There has been loads of research being done on Parkinsons. I hope it's cured before his gets bad... thanks again.

 

[EsmeraldaX]

Originally posted by Aimeedyan
Crohn's is an Irritable Bowel Disease, so I'm very familiar with your struggles... My mom has IBS, but I keep urging her to have more tests run and see if she has IBD instead (many docs just slap IBS diagnosis on people that actually have IBD which is more serious and more work to find, and it usually takes something major to discover it), but she won't... she carries extra clothing with her it's so bad. I've been thankful that my Crohn's isn't played out as much with those symptoms, but most do. I'm glad you've found some meds that work for you...

I have acid reflux, too. Tums are my best friend =)

Thanks for sharing, and it's not TMI for me

I find that the hardest part about these symptoms is that no one feels comfortable discussing them or hearing them, outside of doctors.

I hope I don't have IBD. I sometimes feel like my doctors are very quick to slap a diagnosis on something. The doc who told me IBS was like the 5th doc I saw over the course of 2 years.

 

[Piglet]

I am dealing with a chronic disease - not mine, but my 7yo DD. I think maybe I am dealing with it pretty much the same as if I had it myself, but add a lot of guilt. I did grieve when she was first diagnosed (at 17 months old) and it is still tough. It just takes time to come to terms with it all. But now it seems to come in waves.

It does take a toll on a marriage and I have found that it either brings you closer or tears you apart. You really need to communicate and try to understand how each other is feeling about it all and how you each deal best with it. Be there for each other.

It is a struggle and you will go through times when you are really depressed and have a hard time dealing with all the constant pain, but some days are better than others and hopefully you can get to the point where most are better.

I will pray that you find a treatment & medicines that work. Hugs for you and your family.

Melinda

 

[luvwinnie]

I have psoriasis, psoriatic arthritis, "lupus like" connective tissue disease, (those 3 are all autoimmune) migraines and endometriosis. I'm currently on Enbrel injections and methotrexate, both are immunosuppressive...just got off prednisone. ALso take Plaquenil for the CTD.

I never really grieved, I guess I was just SO relieved to find a dr. to dx me and HELP ME I was thrilled at that point. This is life...no one said it would be fair, that's just my attitude....and there are people who are much worse off. But I'm so sorry you are struggling with this.

Now the SO thing sure is tough. Men think they have to FIX everything and when the can't, well, they get angry...and the wrong people bear the brunt of it. We had to deal with that. And still do sometimes.

PM me anytime.

 

[liznboys]

I have Crohn's disease and ulcerative colitis. I was diagnosed back in spring 1998, right before my dh and I got married.

Once in awhile it kinda hits me (again) that I have an illness that will never be cured, and I will rely on meds for the rest of my life, and I feel a moment of panic. Along with that I have moments where the possibilities involved with my disease scare the heck out of me, and I get overwhelmed.

In the past, I have never been down about having CD for any length of time, until this past spring/summer that is. I had a pretty bad flare-up, and I wasn't getting better. I was about to go on prednisone, but then my prayers were answered and I started to improve. I'm doing better and better with each passing day. I am taking Colazal only right now.

Anyway, there is something that I always say when I'm telling someone how I have this disease. If I have to choose my illness, then I'd rather have this than a lot of other things out there! (cancer for instance) Atleast I know that even if my disease gets really bad, I will still most likely live a long life...rarely does CD kill someone.

Yeah, I don't like taking pills everyday. (I'm the type who won't take tylenol if it's not REALLY necessary...) But you sure do get used to it after a few years! LOL

My advice is to try not to focus on it. Live your life and try not to let the emotions get you down. Surround yourself with people who truly care about you and are willing to listen when you need to vent about your disease. (Feel free to pm me if you ever want to talk!!)

I visit a CD board, pm me if you'd like the link.

Hang in there!

 

[GeekChic]

yes, i've been chronically ill for 18 years. i was never a healthy child, i almost died from my MMR vaccine when I was 3, but at 15 i had my first MS attack (misdiagnosed, though!) and my life has been a rollercoaster ever since.

i knew that i was sick, they didn't know what it was, so before i got married i warned my future husband. he said he could handle it; but i found that as time went on he bored of me being tired and in pain most of the time. he wanted to go out and party; i was lucky to get through the work day, make dinner, and collapse for the night. add two miscarriages, a 9 months manditory bed-rest high risk pregnancy which included surgery and chicken pox, and that was it for our marriage. we divorce when dd was 2 (my choice)

i had been diagnosed with CFIDS/Fibromyalgia/Asthma and a host of reproductive problems in my early 20's, and i just about beat my body to death working as a cashier to finance my divorce. when marriage came up as a subject between me and a friend who wanted to be more, i told him 'look, i don't know what's wrong with me, but i'm sick, and i don't know how much worse i'll get, you have to know that before you even consider tying your life up with mine." not to mention, i had a child already!

but it didn't scare him. he said that he took me, whatever came with me. and he has stood by me; my MS diagnosis came when we'd been married just over a year.

we really haven't grieved; and that's been bad. i've done a lot of avoidist behaviors that haven't helped, shopping, eating, running myself into the ground with non-profit projects now that i'm too ill to work and on disability. but finally now, four years after diagnosis and losing my ability to drive, i'm finally beginning to learn to grieve and accept.

some days it just s*cks. i'm in pain all the time that has failed to respond to treatment; i'm allergic to the only meds that have helped it. i am up almost every night until 3 or 4 because of pain; which adds to my exhaustion.

i use a crutch to get around most of the time and a wheelchair on vacations.

i have a host of those 'icky' symptoms that no one likes to talk about including HORRENDOUSLY severe bladder pain that comes and goes without warning. bowel problems are also part and parcel with the MS package.

it's sad to say that most of my friends have walked away from me; because they can't handle seeing me as 'less' of a person in their eyes than i once was. i don't know how to react to that. i don't believe in abandoning people just because they're sick, but unfortunately most people don't want to be reminded that illness is something that can happen to anyone, at any time, and then life is totally different than it was yesterday.

oh, how my heart aches for anyone who has an ill child. its a miracle that my dd has been so healthy considering they thought she'd be born without fingers and toes due to my chicken pox. i would much rather be sick myself than have it be her.

i know poor DH has to pull a lot more weight around the house than most guys ever would. but we try to keep our sense of humor, make each other laugh, and once a year when we go to WDW, i spoil him with surprises, his favorite restaurants, and basically knock his sox off spoiling to say thank you for all he does for me 24/7.

sorry so long, this kind of topic lends itself to long replies i think.

my understanding to anyone who lives with chronic pain/illness. its no picnic.

geek

 

[Aimeedyan]

Originally posted by GeekChic
yes, i've been chronically ill for 18 years. i was never a healthy child, i almost died from my MMR vaccine when I was 3, but at 15 i had my first MS attack (misdiagnosed, though!) and my life has been a rollercoaster ever since.

i knew that i was sick, they didn't know what it was, so before i got married i warned my future husband. he said he could handle it; but i found that as time went on he bored of me being tired and in pain most of the time. he wanted to go out and party; i was lucky to get through the work day, make dinner, and collapse for the night. add two miscarriages, a 9 months manditory bed-rest high risk pregnancy which included surgery and chicken pox, and that was it for our marriage. we divorce when dd was 2 (my choice)

i had been diagnosed with CFIDS/Fibromyalgia/Asthma and a host of reproductive problems in my early 20's, and i just about beat my body to death working as a cashier to finance my divorce. when marriage came up as a subject between me and a friend who wanted to be more, i told him 'look, i don't know what's wrong with me, but i'm sick, and i don't know how much worse i'll get, you have to know that before you even consider tying your life up with mine." not to mention, i had a child already!

but it didn't scare him. he said that he took me, whatever came with me. and he has stood by me; my MS diagnosis came when we'd been married just over a year.

we really haven't grieved; and that's been bad. i've done a lot of avoidist behaviors that haven't helped, shopping, eating, running myself into the ground with non-profit projects now that i'm too ill to work and on disability. but finally now, four years after diagnosis and losing my ability to drive, i'm finally beginning to learn to grieve and accept.

some days it just s*cks. i'm in pain all the time that has failed to respond to treatment; i'm allergic to the only meds that have helped it. i am up almost every night until 3 or 4 because of pain; which adds to my exhaustion.

i use a crutch to get around most of the time and a wheelchair on vacations.

i have a host of those 'icky' symptoms that no one likes to talk about including HORRENDOUSLY severe bladder pain that comes and goes without warning. bowel problems are also part and parcel with the MS package.

it's sad to say that most of my friends have walked away from me; because they can't handle seeing me as 'less' of a person in their eyes than i once was. i don't know how to react to that. i don't believe in abandoning people just because they're sick, but unfortunately most people don't want to be reminded that illness is something that can happen to anyone, at any time, and then life is totally different than it was yesterday.

oh, how my heart aches for anyone who has an ill child. its a miracle that my dd has been so healthy considering they thought she'd be born without fingers and toes due to my chicken pox. i would much rather be sick myself than have it be her.

i know poor DH has to pull a lot more weight around the house than most guys ever would. but we try to keep our sense of humor, make each other laugh, and once a year when we go to WDW, i spoil him with surprises, his favorite restaurants, and basically knock his sox off spoiling to say thank you for all he does for me 24/7.

sorry so long, this kind of topic lends itself to long replies i think.

my understanding to anyone who lives with chronic pain/illness. its no picnic.

geek

**hugs** to you. Thanks for sharing.

 

[mrsmom]

I have been dealing with a chonic ill child for 10 yrs she has pierre robin syndrome which she has had heart surgery feeding tube and kidney reflux surgery and two cleft palete surgery and six sets of ear tubes and is now looking at another palete surgery and recontructive ear drum surgery and now is on a Cpap machine at night , not fun for a 10 yr old, I think you do go through a grieving process ,than you take it day by day. It gets hard sometimes because we can't do alot of things other families can do because of her medical expense but we are all okay with that. We just look at it this way ( and granted this took awhile ) we could be worse . Hang in there.
Kim

 

[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.

 

[liznboys]

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.

I know how that is. I had bad morning (all day) sickness with all 3 of my pgys as well. And with my last pgy it lasted ALL 9 MONTHS! It was worse than anything I've dealt with in regards to my disease!!! The only thing better was knowing it WOULD end, and you get a new baby too!!

 

[Tinks]

Well....I don't really want to be posting here, but my DS has been tentatively given the diagnosis of IgA Nephropathy. It is a chronic autoimmune disease where his body produces antibodies that attack his kidney. At first we thought it might just be acute glomerulonephritis caused by strep, but now we are facing this!
I say tentatively because sometimes (rarely) a person can have one attack like his and then the disease disappears....obviously that is what we are praying for. We don't want to face a kidney transplant in 10 - 25 years.
He looks and acts as healthy as a horse, though, and for that I'm grateful. He's only 8.

So anyone out there with any experience?? We have a consultation with his nephrologist September 3rd.

How do you keep from getting depressed?? Well, I look at it this way-- getting obsessed with a disease and its symptoms will only make you feel worse. Make the best of each day and enjoy life to the fullest when you are feeling good. Best of luck!

 

[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!

 

[liznboys]

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!

Thank you, I will think about getting that.

 

[philaround]

Early this year I started to experience some severe vertigo. Within a few weeks I was unable to stand up or move around easily. My doctor told me that at least for the time being that I would not be able to drive or work. After several doctors, X-ray's, CAT scans, MRIs, balance tests, hearing tests, and a sleep study my current Doctor dx'ed me with moderate sleep apnia, an ear infection, a slightly deviated septum and a severly blocked sinus. He recommended surgery to relieve these condintions. He expected to find polyps in my sinus cavities, well surprise it was a very large tumor. Thankfully it was benign and was surgically removed. Unfortunately this tumor, which is called an inverting papilloma, very often comes back over and over again. I am still under post operative care at the moment. Sometime in the next month or two I will be undergoing all those scans and tests again to see where things stand.

 

[sweet angel]

Polycystic kidney disease here. Almost everyone on my mom's side of the family has/had it. Me, mom, aunt, cousin, grandmother. No cure, they just give you suggestions to slow the process. Transplant is an option, but that doesn't come until your kidneys operate at like 20%. The good news is, you don't usually die from it...there's other things like strokes or heart attacks that usually get you first.

My grandmother was 61 when she died in 1978. She had been on dialysis for years beforehand and died of a heart attack. My aunt was on dialysis for years and died from a stroke a few years ago...probably around the same age. My mom is 62 and hasn't even started dialysis yet. I guess there must be some progress.

I was just diagnosed about a year ago and they put me on BP meds right away. Last check up, all my levels were great and the doctor (2 years older than me) joked that he'd be well retired by the time I even had to think about dialysis.

 

[mmausse]

My heart goes out to all who have posted. Here's my story:

Though not a disease, I have a VERY rare condition that is life threatening 365/24/7. I am anaphylactically allergic to anything AND everything that contains any type or form of alcohol. If any part of my body comes into contact with it, I can't breathe, my heart stops, and in 20 minutes, I'm dead. No, not just drinking alcohol, but anything with alcohol. I was born this way (when I was younger and would get shots, my arm would swell so much that it looked like it would burst)but it has gotten progressively worse as I've gotten older. Do you know how prevelant alcohol is in the U.S. - it's in toothpaste, mouthwash, shampoo, cleaning products, all steroids, all anti-inflammatories, cough medicine, makeup, cigarettes and cigarette smoke, diesel fuel, lotions, and a lot of prepared foods.

I don't have many friends, for the same reasons that GeekChic cited. I am an inconvenience who has to read everything before I can come into contact with it. A former employer once wuggested I just live in a bubble away from society, so as not to be burden upon them. EVen medical doctors have a hard time believing or taking orders from a pt when I try to tell them what they can and can't prescribe.

But I don't let it, or at least try not to let it, get me down. I am a capable 43yo woman, with a lot going for me. I also have a LOT of compassion for others who are not perfect, so if anyone wants to vent or talk, just PM me. I have been trained as a medic so I have a lot of familiarity with various medical conditions.

Never let them see you sweat and don't let the suckers get you down. We were all "blessed" with our conditions for a reason, we just need to do the best we can and learn as much as we can.