Chronic illnesses
 

When reading this thread, about a girl with Chrone's disease, I noticed that several GCers mentioned that they too had the illness. Part of the problem in that situation, it seems, was that some of the individuals involved were not aware of Chrone's and the problems it causes for those living with it. To that end, I thought that I'd start a thread in which those of us with chronic illnesses could discuss them, educate our fellows on the more obscure ones, and maybe find some others who are living with the same ailments.

So I'll start: I have Fibromyalgia. The easiest comparison is to take Chronic Fatigue Syndrome and add chronic pain. Other symptoms include Irritable Bowel Syndrome and chronic depression/anxiety. The causes of the disease are unknown, but thought to be a result of improper neurotransmitter production. Most people with mild-to-moderate Fibro manage it with antidepressants, pain medication for flare-ups, and light exercise. It can, however, be so severe as to result in people being housebound. The worst part is that there's no cure. The most frustrating part is that it's an "invisible" disease, so people just dismiss it. It's hard to diagnose, and I was told for 21 years that it was all in my head.

As for me, I'm living with it now. It was a relief finally to get an accurate diagnosis so that I could learn to manage it. I work out daily, try to eat right and get enough sleep, and remember to take my happy pills every day.

Fibromyalgia can also be caused by trauma. They are now saying that this is the main cause of my chronic pain that's lasted two-and-a-half years after my accident.

My grandmother actually has a more debilitating form of the condition called polymyalgia. It is way more extensive and crippling. She is homebound and must use a scooter when she gets out anywhere.

It really sucks. I am glad to hear someone referring to it on here. Most of the time no one knows what it is, so I just have to say that I am having back/neck/shoulder pain.

Crohn's
 

I will step up and explain Crohn's Disease in more detail than was discussed in the thread.

Crohn's Disease is an autoimmune disease in which your body attacks the digestive system causing ulcerations anywhere in the digestive system, but *usually* at the end of the small intestine, where it connects to the large intestine. Symptoms are intense diarrhea shortly after eating, weight loss, fatigue and pain. The ulcerations and inflammation can completely obstruct the intestine. It can also perferoate the intestine. Both of those complications are life threatening and require emergency surgery. It is very similar to Ulcerative Colitis, except that colitis only affects the colon and if you remove the colon, (which is drastic with lots of side effects), colitis is gone. With Crohn's, you can't remove the whole intestine or you won't absorb nutrition. Crohn's is usually treated with immunosuppressants, to reduce your immune system so it stops attacking you. It is also treated with steroids and other anti-inflammatories. There is no cure, but you can go into remission for periods of time. When an area becomes too diseased, they remove the diseased section and reconnect the two healthy ends. 50% of the time, someone who has had a resection has to have another one. The disease usually returns just above the location of the resection. During times of severe inflammation and narrowing of the intestines, fiber has to be avoided, because it's very painful for it to pass through that area. You can also develop "fistulas" which are like tunnels that branch out from the intestine (almost like a bypass route). The problem is, they sometimes go to places that they shouldn't. These also require surgery. Secondary complications of Crohn's include eye irritations, mouth sores, leg rashes, rheumatoid arthritis, and pyoderma gangrenosum (wounds that don't heal, like gangrene). Post-surgery, there are often problems with absorption of nutrients. For example, I don't absorb Vitamin B12 anymore, which is essential for nerve, muscle and red blood cell regeneration, so I have to get B12 shots or use a nasal gel that provides me with B12. On the plus side, I don't absorb cholesterol anymore either, so my cholesterol levels are great!

Feel free to PM for more info or visit CCFA

Dee

von Willebrand's disease, a bleeding disorder stemming from a lack or deficiency of von Willebrand's factor in the blood.

Diminished vWf levels can also make it look as though a patient has low Factor VII and VIII, which are indicitative of hemophilia.

Symptoms depend on the severity of the disease. The disease is not contagious. Symptoms include but are not limited to: mild or extensive spontaneous bruising (i.e. bruises, especially on the extremities, where you didn't bump yourself), nosebleeds, bloody gums when you brush your teeth, and heavy periods.

Often misdiagnosed as either a gynological problem (because of the heavy bleeding -- many women even have surgery to correct this and never suspect it's NOT a gynological problem) or, even better, a domestic abuse problem.

Some women with vWd are unable to carry a child.

vWd is the most common blood disorder. It is more common in women than in men. It is more common for whites than any other ethnic group.

Treatment includes nasal spray and transfusions. Being pregnant can completely eliminate vWd for reasons that are not yet known. Treatment also includes, for women, birth control pills (which makes sense, since the pill basically tricks your body into thinking it's pregnant.) Many patients with vWd opt to go without treatment, however, and simply wear a MedicAlert bracelet in case of severe trama. These patients need to be especially careful regarding their diet (amazing what you can do just by changing what you eat!) and make sure they get enough iron and protein to help their blood cells function as well as possible. These patients also need to be watchful of symptoms; increased bruising, nosebleeds that don't stop, an especially heavy and long menstrual period, etc. may indicate they need to seek treatment.

Re: Chronic illnesses
 

I know several people with fibromalagia. When you spoke about "invisible disease" and "people just dismissing it" I got sad because I think about so many people I work closely with who suffer from depression and related "disorders". Many of them also have other intertwined "stuff" such as addiction to pain killers, eating disorders, etc. So many people (including people in my field :mad: ) just think they are making excuses for themselves and they "should just get over it" especially if they are very young. Awhile back I got a bunch of stuff from an agency that educates young students on up on chronic illnesses & mental illness. I was excited and spoke to several of my teacher friends, including my mom, who is now retired, but was then a teacher. They all told me, "Allison, you have good intentions, but unfortunately we don't have time and the curriculum doesn't allow for us to teach this". I wish there was a way to get this info out to the general public. This is a good thread.

Juvenille Diabetes
 

I have Diabetes Mellitus. Also known as Type 1 Diabetes, Juvenille Diabetes and Insulin Dependent Diabetes Mellitus (IDDM).

Type 1 Diabetes is when the the body produces very little insulin or non at all. Insulin helps the body use glucose for energy. When there is no insulin, the glucose builds up in the blood stream causing a toxin to build in the blood called Ketones. If the blood glucose gets to high, it is fatal.

No one knows the exact cause of Type 1 Diabetes, but there are several theories. There is no cure.
Type 1 is controled through synthetic (for most people, although some people do take Bovine and Pork insulin) insulin to keep the blood sugar regulated. This is done through injections. Type 1 diabetics cannot control their blood sugars through oral medication. Blood glucose (blood sugar) must be monitored. Exercise is also important in regulating blood sugars.

Sometimes the blood sugars can drop too low. This is called a hypoglycemic reaction. Fast acting sugars (like juice or pop) should be taken to bring a blood sugar back up. These are caused when there is too much insulin and not enough food. They can also be brought on through exercise. A high blood sugar (Hyperglycemic reaction) is cause when there is too much sugar (food) and not enough insulin.

ETA: About 10 percent of people with Diabetes have Type 1. 90 percent of people with Diabetes have Type 2. Also, 3.5 percent of pregnancies can result in Gestational Diabetes.

Re: Juvenille Diabetes
 

Ditto. I've got the same thing. Been so for about 22 years now.

Re: Re: Juvenille Diabetes
 

Really?!! Wow, 22 years? You must have been diagnosed as a baby!

I have been diabetic for 12.5 years.


I also wanted to add, that Type 1 diabetes affects those under 30. It is very rare that a person over 30 will be diagnosed with type 1.

Re: Re: Re: Juvenille Diabetes
 

Diagnosed 2 months after my 1st b-day. I know nothing else.

I have the "infernal" chronic cough since I was ohhh about 9 years old but I don't think that qualifies as a chronic illness. I am a singer so my nice attractive hacking through songs is EXTREMELY annoying and unattractive.

One time I stomped into my doctor's office (annoyed as usual because I hate going to the doctor), and told my dr., in my usual overly dramatic way, that I was "dying" of emphasyma. She said, "no you're not. you just have a cough, due to your asthma, that will not go away because there's no cure for asthma."

ETA: BTW, I am usually overly dramatic in case ya'll hadn't noticed by now. :p :D :cool:

My sister has Fibromyalgia as a result of Lyme Disease which she had for five or six years. The medical community doesn't consider Lyme Disease chronic, or they didn't at the time, but the consequences of it are. For those of you who have Fibromyalgia, it can improve. She has flares up, but she is usually okay. She'll never be 100%, but she usually lives pain free. When it acts up, she takes prescription strength ibuprofen or naproxen or glucosamine chondroitin. Anti-depressants didn't work for her. In fact, they made her worse because of the Lyme Disease.

Re: Chronic illnesses
 

Bumping this thread b/c i'm ticked at myself for having this:
I have CFS. I recently just spent like 19 hours in bed. I've had a lot of stress lately and a lot going on. But still it is so frustrating. And when I go to the UK Clinic they tell me I"m lazy. :mad:

PS. - What are you're happy pills? PM me.....we'll share happy pill news together

This really struck me! There's just so much we are learning in the area of pregnancy. It's so beautiful!

Wow...this sounds exactly like me.

I have bruises all over my arms and legs that I can't figure out how I got them...I've had several people comment on how awful they look.

I get spontaneous nosebleeds usually twice a week. There is no apparent cause for why, and I've just gotten used to carrying travel packs of tissues with me everywhere I go.

My gums always bleed when I brush my teeth. I hate flossing because my gums gush blood everywhere.

My period is ridiculous, enough said.

When I cut myself, it takes FOREVER for the blood to clot. I'm a first aid provider, so I know how to slow the bleeding and I've treated cuts on many people. Mine definitely take the longest to stop bleeding.

I hope this thread hasn't made me into a hypochondriac!

Re: Re: Chronic illnesses
 

While it's not a disease, it's still horrible. I've mentioned it before but this is a great thread to expand on it. I have Traumatic Brain Injury and some issues from it still. I had two severe brain traumas (one in 1981 and one in 1995). Both were life threatening situations. Here's some info (I'll italicize the things that have been a problem and italicize + bold things that are still a problem):

Acquired brain injury (ABI) refers to any type of brain damage that occurs after birth. It can include damage sustained by infection, disease, lack of oxygen or a blow to the head.

Some causes: alcohol/drugs, disease, lack of oxygen, physical injury and stroke

The long term effects of brain injury are difficult to predict...It is common for many people with ABI to experience increased fatigue (mental and physical) and some slowing down in the speed with which they process information, plan and solve problems. They may experience changes to their behaviour and personality, physical and sensory abilities, or thinking and learning.

Traumatic brain injury (TBI) is not the same as head injury, since a person can sustain damage to the face, scalp and skull without necessarily injuring their brain. TBI is considered a form of acquired brain injury, and refers to brain damage caused by an impact to the head. When the head is heavily struck, the brain slams violently against the inside of the skull, causing physical injuries such as bruising, swelling, bleeding, twisting or tearing of tissue. There are degrees of injury, ranging from a momentary loss of consciousness (which can happen from, say, a punch to the face) to a long term bout of unconsciousness or coma.

Source

Problem Areas:

1) Cognitive: communication and language, memory, comprehension (especially learning new information), perception, short attention span, concentration, distractibility, expressive language skills, organization, planning, decision making, judgment and reasoning, flexibility (adjusting to change), studying and academic skills

(yep, all those were huge issues for a few years!)

2) Physical: vision, hearing, speech, coordination, balance, strength, equilibrium, limited movement/motor function, eye-hand coordination, spatial orientation, seizures, fatigue, weight

3) Emotional: denial, depression, anger, fear, self-esteem, self-control, awareness of self and others, interest in activities, social involvement, family relationships, age-appropriate behavior, post-traumatic stress disorder, social isolation

4) Environmental: noise, temperature, visual distraction, unexpected change, inadequate support, inadequate information, inadequate transportation, misunderstanding by others/rejection

Source

I was in a bad car accident several years ago, and sustained fractures to my jaw, face, and skull. It caused TMJ Syndrome, or Temporomandibular joint syndrome. People who grind their teeth (bruxism) at night are also likely candidates for TMJ. Other than the pain in the jaw, the symptoms include a "popping" in the jaw, headaches, the inability to chew, headaches, muscles spasms, headaches, developing small "fat pads" and/or bruises under the eyes, and of course, headaches.

In my case, the cartilidge slipped out from between the top & lower jaw, and my facial nerves slipped in (bone can't move on bone). I used to get procaine shots into my jaw on a weekly basis, and wore a very sexy mouth guard at night, but try not to anymore. However, since I've had one crown come off three times in the past year, I have this feeling that I'm going back to the mouth guard. blech.

When this all happened, everyone worried about my legs & arm (also broken). I wasn't properly diagnosed for another month!

That actually just sounds like you might not be getting enough iron -- i.e., taking good care of yourself.

You would know if you had a bleeding disorder.

I am anemic.

I was just a bit worried I had some other new disease too! Thanks for clearing that up.

It sounds like you have problems w/ your platelets/bloodclotting. I don't want to scare you...but that could be symptoms of something serious...you should check that out w/ the doc to make sure it is only anemia.

I wasn't sure about wirting in this thread but i felt if everyone was free to feel they can say what is wrong with them i can say it too....

besides the allergy asthma i have I have carpal tunnel froma really bad car accident last yr. Ii put my right hand thru the windshield causing the CTS....looing at having surgery later on for that. damaged it so bad in my right hand I no strength whatsoever in it


but the one thing i have and am always self concious about is psorriasis. They say it is also an autoimmune disorder... it has caused me to loose hair so bad i look like i am balding sometimes on my scalp. It is soo embarrssing sometimes that I wear a lot of headbands to cover it up.

Other girls with diabetes!!!!
 

HOOORAAAAAAAY! I mean, not hooray you've got diabetes, but other girls with diabetes who have lived through college! That's so exciting! I'm on pump therapy right now and I LOVE it. Although I'm not too happy with my pump company right now...think I might be switching over. I'm so glad, you have no idea!!!

I was diagnosed at 9. My diabetes was caused by my T Cells attacking my pancreatic islet cells (the ones that produce insulin) after I had an infection. I just thought I had a urinary tract infection, because I had to go literally every 5 minutes. But low and behold, diabetes! But it sucks being a diabetic girl during puberty...the weight gain, mood swings, struggles...holy crap it sucked. Pump therapy is awesome.

Trying to be a triathlete and a rower and a swimmer with diabetes is not fun. one of the most "not fun" diseases out there. It sucks having to leave class to take medicine or to eat something...blah.

I always see the commercials about psorriasis. Please tell what exactly happens and what your experience has been. Is it painful or just annoying? BTW, thanks for opening up and sharing!!

I have aplastic anemia.

It sucks.

Hi all. Can I change the direction of the thread just for a teeny bit? You can pm me responses if you'd rather not reply here.

Anyway, here goes.

I'm a brand new pledge in a small sorority on my campus. I have a stomach problem, still undiagnosed after 2 years, but it's probably Crohn's or one of its related diseases.

I feel I should tell my (soon to be?)sisters about it. I don't want them offended when I'm too tired to hang out and things like that. We don't have houses here so living together will never come up. Some might already have a suspicion that something is up, because I have a "medical single" (single dorm room with own bathroom.)

So, how did you tell your sisters/brothers what you're dealing with? All at once, or when it came up, or ahead of time? Just curious.

I think I'm going to maybe get one of the sisters aside and ask her if anyone in the group has a chronic illness, but don't tell me who or what. It's their business. How I tell them will just depend on if there is someone with one already or not.

Sorry for hijacking the thread!

My "Sis-granddaughter" in my sorority had Crohn's. She told her Sister-Mother (our equivalent of Big Sis) who shared the information with us. She needed a bowel re-section when she was a Sophomore and she got nothing but support from all of us! If your sisters don't understand a health issue, then they aren't going to be worth having as sisters!

Guess who the first person I called when I was diagnosed with Crohn's was? Of course, the sister who I knew had it for most of her life. She was so incredibly supportive and an inspiration to me as she's a triple black belt in Tai Kwan Do and a police woman.. with Crohn's! She's amazing!

I hope you get a diagnosis soon (along with some meds that help). It is a very frustrating time when they haven't figured it out for sure yet. With a diagnosis, there will be hope for treatment and relief of symptoms!

Dee

Couple of new ones
 

Myasthenia Gravis
Mr. A came down w/ this about a year ago. MG is an autoimmune disorder (usually) that attacks acetylcholinesterase - an enzyme residing in the synaptic gap that regulates neurotransmitter levels. This leads to muscle weakness. In its worst form (MG Crisis) it can cause difficulty breathing requiring temporary ventilator support. It varies in severity and has several subsets. Mr. A has Ocular MG, which only affects the muscles around his eyes and eyelids. Remission is possible - some patients require a thymectomy to reduce the autoimmune reaction. Mestinon (same type of treatment as the antidote for nerve gas) can control the symptoms.

Mr. A has been fortunate that his symptoms haven't generalized on him. But we found out that he doesn't have any signs of an autoimmune reaction - no antibody, which is part of the diagnosis. We think his MG was induced by Lipitor. (Read the fine print on any statin drug prescription - about 1-2% of patients taking them come down w/ MG or similar symptoms. This is why the "muscle pain or weakness" disclaimer is in the commercials on TV.)

Coincidentally, MG is considered a Muscular Dystrophy-type disease covered by work done by the MDA - which is KA's national philanthropy.

Hypothyroidism
Usually also an autoimmune reaction. Causes the thyroid gland to shut down and stop producing thyroid hormone. I came down w/ this out of the blue a couple of years back. Thyroid hormone levels have to be monitored every 8-12 weeks and I take a synthetic hormone replacement for it. NBD, in the grand scheme of things.

--add

I bet! Have you had a bone marrow transplant? Does it ever go into remission? How hard is it to live with?

No I haven't had a bone marrow transplant. It hasn't gotten to that stage yet. I never really noticed it until recently when I had to start getting transfusions. Luckily, those seem to be doing wonders for me. I'm just glad it isn't cancer and I'm not having to stay in the hospital in isolation.

hey. i too had a medical single when i was a junior. i had chronic insomnia for over 7 years, and the medicine i took made me very sick, nauseous, lethargic, etc. i would always try to go to bed early, because i knew it took me over 5 hours most nights (and still now sometimes) to fall asleep, even with my medicine. this became a problem during recruitment when we would be doing our thing until 2 or 3am. i decided to tell the president and recruitment chair (and eventually shared with everyone). they completely understood why i would have to leave early sometimes.

your sisters should be understanding and will probably do everything they can for you. especially that it is a documented illness. if they're not....well...you have some thinking to do. but i can say with 99% certainty that they will accomodate you.

these women are your sisters. being honest and open with them will help form a lasting bond of trust and friendship. good luck. don't be scared to do the right thing

BobbytheDon caught the HIV from some dude in Hollywood.

-Rudey
--And he paid for it too.

What does that have to do with anything?

Of COURSE I told my sisters when I was diagnosed with von Willebrand's disorder. They're some of the most important people in my life. Why wouldn't I tell them?

I'd been absent from some meetings already to be at the hospital and whatnot, so the girls already knew something was up. And telling them what my disorder was and how it worked just let them understand why I couldn't be at everything I wanted to be at while I was receiving treatment.

I'd feel dumb explaining "I have crohns and this is what it entails" if someone had already given "the speech" just last semester or something. Of course I'd want to clarify how my case might be different or whatever, but it's not all that uncommon anymore and I don't want to overdo it.

I have been very surprised how many people know someone with Crohn's since being diagnosed myself. You can always ask "Are you familiar with what that is?" before you launch into an explanation. It doesn't have to be some big dramatic speech to the whole group. I would talk quietly first with my Big Sis/Sister-Daughter (whatever terms your group uses) or with your New Member Coordinator/educator (whatever term your group uses again!) and let them know first, in case you have to miss events because of it. Trust me, it's much harder telling your BOSS than telling your sisters!

Dee

To those with Crohn's...
 

Do you mind explaining the difference between Crohns and ulcerative colitis?? My brother has UC, but it was first diagnosed as Crohns.

Crohn's and UC are both autoimmune diseases of the digestive system, but UC only affects the colon (large intestine) and only inflames/ulcerates the first layer of tissue in the colon. Crohn's can affect any part of the digestive system from mouth to rectum and inflames/ulcerates more layers. Crohn's can also include fistulas, which are little tunnels created from the intestines to other organs or to the skin. Crohn's is more likely to create blockages (in part because the small intestine is much more narrow to begin with). The type of inflammation is different also and they can get a definitive diagnosis with a biopsy taken during a colonoscopy.

Crohn's is more serious and has no cure. With UC, although drastic, if the colon is removed, it is gone.

20% of people with Crohn's have family members with UC or Crohn's and 20% of those with UC have family members with UC or Crohn's, so there is a cross correlation.

There is also a condition called Crohn's colitis, which is Crohn's type inflammation occurring in the colon.

Hope that helps,

Dee

I have Tietze Syndome:

"Tietze syndrome is a rare, inflammatory disorder characterized by chest pain and swelling of the cartilage of one or more of the upper ribs (costochondral junction). Onset of pain may be gradual or sudden and may spread to affect the arms and/or shoulders. Tietze syndrome is considered a benign syndrome and, in some cases, may resolve itself without treatment. The exact cause of Tietze syndrome is not known."

It may not sound like a big deal but when the swelling comes on it pushes against my ribs and it hurts to badly it makes me want to puke. Imagine the worst pain you've ever had and multiply it by about 10. That's what it's like.

The shitty thing about it is, it is so obscure and rare that doctors don't know how to treat it or what causes it.