The Chronically Ill support Group

[Tinks]

Well, I am another one who can join your group. I a newly diagnosed Sjogren's Syndrome. I don't have much to complain about yet as my symptoms are mild and it was caught very early. It is a chronic disease, however, and one I'll have to live with as there is no cure.

Sjogren's is an autoimmune disease. Autoimmune diseases are basically all interconnected....all under a similar umbrella. Often if you have one, you have a greater risk of developing another. (For instance, I have had Hashimoto's thyroiditis since I was 6!) Sjogren's is a triad of dry eyes, dry mouth, and rheumatoid arthritis. Very similar automimmune diseases include, Rheumatoid Arthritis, obviously, Juvenile RA, Fibromyalgia, Raynaud's disease, MS, Lupus, Chronic Lyme disease, and Scleroderma.

I am hoping for a very slowly progressive form of Sjogren's.

Hugs to everyone dealing with these things. It really makes you appreciate and value life one day at a time.

 

[Christine]

Well, I am another one who can join your group. I a newly diagnosed Sjogren's Syndrome. I don't have much to complain about yet as my symptoms are mild and it was caught very early. It is a chronic disease, however, and one I'll have to live with as there is no cure.

Sjogren's is an autoimmune disease. Autoimmune diseases are basically all interconnected....all under a similar umbrella. Often if you have one, you have a greater risk of developing another. (For instance, I have had Hashimoto's thyroiditis since I was 6!) Sjogren's is a triad of dry eyes, dry mouth, and rheumatoid arthritis. Very similar automimmune diseases include, Rheumatoid Arthritis, obviously, Juvenile RA, Fibromyalgia, Raynaud's disease, MS, Lupus, Chronic Lyme disease, and Scleroderma.

I am hoping for a very slowly progressive form of Sjogren's.

Hugs to everyone dealing with these things. It really makes you appreciate and value life one day at a time.

Hi Tinks! I'm fairly familiar with Sjogren's as I have been evaluated for it (but don't have it). I had some severe dry mouth issues one year after radioactive iodine treatment for thyroid cancer. I have recently developed dry eyes (but they attribute that to rosacea). I then had an awful bout of dry mouth when they switched me from name brand Prilosec to the generic form. No one could believe it was due to a med change, so they were testing me for all sorts of stuff.

But, the dry mouth, dry eye stuff is most unpleasant. Hopefully your will not progress.

 

[JoyG]

I am the "healthiest" sick person you'll ever meet!

I don't have any severe chronic illness but I feel chronically ill. Does that make sense.

When I was 30, I was diagnosed and treated for thyroid cancer. That is an ongoing thing that will be monitored for a lifetime. I struggle all the time with keeping my thyroid hormone in the right range.

I have had three breast biopsies in the past 2 years (had two previous biopsies in my 20s). All benign, but all very scary. And they were actually open biopsy--not the quick kind in the office, so the healing part of it has been rough.

Then I have acid reflux and IBS that came after a bout of giardia (which occurred long-term as a result of my thyroid cancer treatment).

Basically, I haven't felt "well" since my mid-30s. Yet, every doctor tells me how healthy I am. Nothing ever shows up. It all gets very depressing.

I feel just like you...the healthiest sick person you'll ever meet!

I am always tired. I don't have a lot of energy at all. I go to work and come home and get in bed.

I also have swollen lymph nodes on one side in my neck...a whole chain of them that have been there a year and not gone down. I had one removed for biopsy and no cancer...but yet they are still there.

In July (the last saturday of July to be exact) I started have heart palpitations (pvc's)...hundreds of them a day, every day without letting up. Now I'm on beta blockers (I'm only 33). I've had my heart evaluated and my cardio says they are benign, nothing to worry about...it just really disrupts my life to have them.

Finally, I'm getting these darn styes in my eye that wont go away...I'm about to have surgery to take them out...

Personally, I think I have sarcoidosis...a diagnosis I got from putting all my symptoms together at once in google. There is no official diagnosis from my doctors though.

 

[JennyMominRI]

I
Personally, I think I have sarcoidosis...a diagnosis I got from putting all my symptoms together at once in google. There is no official diagnosis from my doctors though.

My brother has this and has had a very rough time.I'd say he has been sicker from this than I have been with AIDS. I know it's very hard to diagnos

 

[Claire L]

Like AMcaptured I also have been diagnosed with RSD. I was diagnosed just over two years ago, 4 months after being assaulted at work. I was off work for 14 months and had 3 arm blocks to help restore the blood flow to my left arm. Was on various meds and have had two lots of intensive physio at a rehabilitation center, provided through a small subscription I pay for through work. I am still in pain, most days it is manageable and I am back at work on restricted duties but hoping slowly to resume full time active duty.
Chronic is often seen as a bad word here as our National Health Service do not have the resources they need to help people with Chronic illnesses especially the more unusal ones. I asked last eyar for hydrotherapy and when they knew my illness said they could only offer 4 sessions max! Anyway I have continued on without and to be honest don;t really see the Dr unless I really need to. Work have been supportive and so has DH but really unless you are living with Chronic pain I don;t think anyone can understand how it feels.

to anyone else with longterm health issues.

Claire

 

[Shugardrawers]

Just wanted to invite you all to visit http://www.gildasclub.org/
If you have one near you it's so worth the trip. Gilda died of ovarian cancer and the peritoneal cancer I have is so closely related that they are considered one and the same. Gilda's Club has been a wonderfully supportive bunch for me. And what a fitting tribute to one of the greatest comedians of our time.

 

[Shugardrawers]

Let's lighten the mood a bit. I've decided there are some definite perks to having a chronic illness.

Nobody expects your house to be clean anymore
Dh does all the laundry and dishes now
I don't have to "fake a headache" anymore
I can go to the store looking like heck and everybody thinks it's great that I'm out and about
Two words: Handicapped parking!!!
If I want a milkshake for dinner Dh is just thrilled I'm eating anything at all
"I just didn't feel up to it" is considered a legitimate excuse
I get to live in my jammies

 

[mickeyfan2]

Also I believe that living with a chronic illness makes you stop to smell the roses and enjoy the small things rather than put off for tomorrow.

 

[kydisneyfans]

Another Crohn's person here--diagnosed at age 20-had 3 surgeries within a year-was clear for 8 years-and have had a few blockages in the past 5 years--the frustrating part is no predicatability--I was hospitalized the day after New Years with a blockage that came on while playing Spongebob life with our son. No tracing to food whatsoever. Can eat mexican food 100 times but the 101st causes a problem. Having Crohn's is a pain in the butt--literally--but it could be worse.

Also have asthma--my wife has endometriosis which is causing problems in having child number 2.

 

[kydisneyfans]

I work full time - I've actullay been at home the last two weeks recovering from laparoscopy and a few other oscopies that they threw in as well. I'm itching to get back to work (Monday!).

My Crohns medication keeps things pretty well under control but I usually end up missing at least a day or two through the year due to minor flare ups. I was completely upfront with my manager when he hired me (he got waaay more information than he ever needed or wanted!) so he's pretty understanding. Of course, I usually put in about 50 hours a week so he has nothing to complain about.

I've got painkillers for the Endo...don't usually take them at work because they muddle my brain and my job is fairly analytical and detail oriented...I also act as the assistant department manager and repsonsible for supervising three associates so I gobble Advil during the day if it's bad and then pop something stronger when I get home. I'm hopeful that once I start my new endo treatment plan next week the discomfort will be lessened considerably.

And, whoever posted earlier about having a sense of humor about the whole thing was on the money! I joke about the Crohns all the time (otherwise it would just gross me out!).

B.

Just a question-I have been told not to take Advil or Motrin with Crohn's--does that cause any problems for you? I was told Tylenol and Aleve are both better options.

 

[puggymom]

Another fibromyalgia patient here. I'm currently on STD due to the worse flare I have ever had. I lost my father on January 5th and they think that's what caused me to spiral out of control.

Other than this flare I was doing great this past year. For other fibro sufferers or arthiritis too, there is a great supplement, Cherry Flex. I order it from Brownwood Acres. If takes a few months to feel the full affects, but my aches and pains were almost completely gone. My mother who has arthritis has had improvement too while taking it. My Rheumy was amazed at the progress I had made.

I also have suffered from sarcoidosis and have residual breathing problems from that.

 

[Aimeedyan]

Another Crohnie checking in! I was dx 2 years ago this month (happy anniversary to me!) and living an almost 100% normal life due to Remicade. Best. Drug. Ever.

I am rarely affected by food and I don't have the usual Big D symptom - but I am affected by stress. I get acute blockages on occasion, double over in pain for a few days until I puke for hours on end, and then I'm fine. I just pray that Remicade continues to work AND it comes down in cost. That bill is painful!!

You would think my small issue would be asthma but right now it's out of control - I'm on 9 meds a day just for asthma and allergies and I'm still not in control. My allergist doesn't want to do allergy shots due to my Crohns so we are looking at using a biological med for my asthma, too. Course Remicade is biological as well so the docs have to decide if my poor immune system can handle two at once!

I have anemia, like most others with chronic disease, and deal with the ramifications of low hemoglobin and iron (memory issues, concentration, energy, etc). And crunching ice is my idea of happiness! (I have pica, too)

I work FT (and then some) and finished my graduate degree in the midst of my dx (and sickest time). I pray that I will never have to slow down much... medicine has come a long way!

 

[Talking Hands]

I have insulin dependent diabetes, fibromyalgia, osteoarthritis, neurofibromatosis (mild), sciatica and mild depression. My knees, back and hips are always painful as well as my neck and shoulders. I take 8 pills in the am and 4 at night and various NSAIDs throughout the day.

 

[Shugardrawers]

And crunching ice is my idea of happiness!

I always heard it was a sign of....ummmm....frustration (you know what kind I mean )

 

[Rootskate]

 

[oybolshoi]

Just a question-I have been told not to take Advil or Motrin with Crohn's--does that cause any problems for you? I was told Tylenol and Aleve are both better options.

I was also advised to avoid the ibuprofin, but it works so much better for me than tylenol that I have decided to take my chances. I do try to be sure to keep an eye on the doses because I know too much can cause intestinal bleeding, but I haven't really had any issues. Even my GI doctor said "moderation is the watchword."

This has to be one of the most annoyingly conditions to deal with, don't you think? And there are certain foods I miss eating so much that sometimes I'll just go ahead and eat them even though I know I'm going to pay for it within an hour or two. Salad is the big one...during the summer months I can't stay away from it and then I always end up paying homage to the porcelain god.

Just curioius - what's your wife trying for her endo? Has she tried Lupron treatments at all? My doctor suggested it for me but I haven't made up my mind about it yet.

 

[oybolshoi]

Rootskate, you have nothing to apologize for! It sounds like you and your family have been dealing with some very stressful stuff - if it were me I'd be scared and sad, too.

I'm not a doctor, but I'll share with you what I picked up from my brother's oncologist when he was diagnosed with lung cancer - don't make your decisions based purely on those percentages, and don't live and die by those survival rates (pardon the expression).

So many individual factors come into play - everyone's body is different and one person's miracle drug is another person's dud. She's been diagnosed early which is a huge plus with lung cancer (my brother was 37 and stage 4 when they found his). I don't know your mom's overall state of health, but I think you have many reasons to feel hopeful that she can be successfully treated.

One of the things that helped me during my brother's illness was researching and reading as much as I could about the disease. Knowledge is power and you can help your mom out tremendously by being an advocate for her with her doctors - ask questions, take notes when you have appointments with doctors, find out about clinical trials, learn about her medications. And don't ever be afraid to seek a second or third opinion.

Good luck with everything.

Brenda

 

[Rootskate]

Thank you Brenda. My mom has never been sick a day in her life. I am hoping that will work in her favor.

 

[escape]

I can say I'm lucky at this point. I don't have a chronic illness. However, I have had and still have close family members with health problems.

Rootskate and Pumba, I can sympathize with you. I know how difficult it is to see loved ones suffer. Although we may not be the ones suffering physically, the emotional roller coasters we go through can take a toll on our well-being.

to all you!

 

[chell]

Rootskate so sorry to hear about your mother. Praying for the best for her.

luvwinnie I have been working full-time until just recently. In November I had to have surgery which took me a little time to recover from. Then in December Junior was killed and that caused a major flare up for me. Actually the stress from the last year has caused a major flare up. Last week I started to feel like my boyd is calming back down again though. Now if the pain will ease up I will be much better.

The more I read of this thread the more stuff I remember that I have. How sad is that?

My mother wants me to go on disability but I don't want to try that yet. I've got too much fight left in me for now and I want to try to work as long as I can. Yes some days it is all I can do to get out of bed and get dressed but I've got to keep trying until I simply can't go anymore.