The Chronically Ill support Group

[Shugardrawers]

YOU hate em? My nurse is downright sadistic with them. Lately no one uses lidocaine to numb your hand anymore. They just grab and jab. This is my second round this week. And of course, ladies, what happens when women get high doses of anti biotics......Yup. Like I really needed that on top of everything else.

 

[crs7568]

My body seems to be in desperate need of a good electrician...

Immediately after the birth of my second child I began having numerous heart palpitations. I went to the emergency room and was told that I was having pvcs due to Long QT syndrome. Esentially this means that there is an electrical problem in my heart where there is sometimes too long of a pause in the resting phase between heartbeats. It sounded innocent enough until I was told about the potential for sudden death. The news got even better when I was told that it was a hereditary condition and each of my children has a 50% chance of inheriting it from me. Talk about guilt. I have managed to control it so far with a beta blocker and I am restricted from activities that can accelerate my heartbeat or give me a sudden scare such as rollercoasters.

Two years ago I began having what felt like spasms where my brain was shaking like jello. It does not last long but ends with the feeling of getting an electric shock and leaves me tired and having a terrible headache. After several tests, it was determined that I have a brain cyst and "abnormal electrical bursts" in my brain. Apparently they are simple partial seizures and have nothing to do with the brain cyst. I take Kepra for the seizures but it does not appear to be working. Last week I had one day where I must have had about fifty of the darn things. Fortunately, no one can tell by looking at me that it is happening to me. Unfortunately, the Kepra has the side effect of prolonging the QT interval of my heart condition so I am currently trying to figure out how to handle the problem. Which do I feel like taking my chances with?

Many days I feel depressed and mourn the loss of my old self. I am so fortunate to have a supportive husband but sometimes that adds to the guilt because I feel like I tricked him. I am definitely not the person that he married. It is great to hear about other people's problems and how they deal with them. Thanks to anyone who took the time to indulge me in my pity party!

 

[JennyMominRI]

First off, hi to all my fellow chronic 'manageable' illness (don'tcha just love that phrase ) people.

A person on another thread posted that they had to take antibiotics for 3 weeks and were getting so tired of taking medicine that they were feeling like giving up. I almost choked on my soda! What I wouldn't give to be able to take 3 weeks/months/years worth of medicines and actually be better, instead of the 17 years' worth of daily meds that I have been taking just to maintain something like a status quo! I had my regular follow-up with my Doctor this week, and had to update my list of meds before going in (since I can't remember them all)...I'm on 15 different meds every day, 16 in the summer when my allergy meds get added, 17 if my herpes flares up and I have to treat it! WAY too much of my time is spent filling my pillbox, taking ills, refilling prescriptions, making sure my insurance plans pay what they're supposed to on all of them, etc. etc. I could get so much more done in a day if I had all that time back!

OK, glad I got that off my chest; I feel better now. Hugs and pixie dust to anyone needing it today!

Sucks doesn't it? What do you take?
I currently take
Combivir,
Crixovan
Norvir
Monopril
Altenolol
septra
Norvir


I have taken
ddi (so big I had to break it into 4 pieces)
3tc
d4T
Sustiva
Ritonovir
AZT(500mg's,which was a HORRIBLE dosage)

I know I'm forgetting a ton
This Combivir/Norvir,Crixovan dosage is a killer,but its what breaks the brain barrier

 

[JennyMominRI]

YOU hate em? My nurse is downright sadistic with them. Lately no one uses lidocaine to numb your hand anymore. They just grab and jab. This is my second round this week. And of course, ladies, what happens when women get high doses of anti biotics......Yup. Like I really needed that on top of everything else.

Do you get the painful Lidocaine,or the painfree lidocaine

 

[buckylarue]

Sucks doesn't it? What do you take?
I currently take
Combivir,
Crixovan
Norvir
Monopril
Altenolol
septra
Norvir


I have taken
ddi (so big I had to break it into 4 pieces)
3tc
d4T
Sustiva
Ritonovir
AZT(500mg's,which was a HORRIBLE dosage)

I know I'm forgetting a ton
This Combivir/Norvir,Crixovan dosage is a killer,but its what breaks the brain barrier

For my HIV, I'm currently on Epivir, Viramune, and Viread. I started on 600mg of AZT monotherapy, dropped to 500 for about a year, then 300 for a couple of years before ever adding anything else (WAY too long on AZT monotherapy). Then added Epivir, which (it turns out) is not a good combo if you don't want lipodistrophy. Then when the protease inhibitors came out, we started adding them to my regimen. Was on Crixivan, Norvir, Invirase, Viracept; also at one point, we dropped the AZT and put d4T instead.

So, besides giving me gaunt skin, muscle aches in my extremities, chills, fever, and a buffalo hump, the fat redistribution caused major heart problems, leading to a series of heart attacks. Had a balloon angioplasty and a stent installed in the worst blocked artery, and they started me on Atenolol and Quinapril and a daily Aspirin. Finally failed on all the PIs, so wound up on the Epivir/Viramune/Viread combo. Was started on massive doses of cholesterol meds (gemfibrosil, Lipitor, Zocor, Pravachol), until my muscle pain and weakness got so bad that I had to stop all statins and start taking gabapentin (Neurontin) for the leg pain. I'm now on Zetia for the cholesterol, which (so far) hasn't shown the nasty side effects of the statins.

When I was on the Crixivan, I has a terrible time with GERD, and never fully recovered from it, so I am on high dose Zantac (300mg/day) and Protonix (80mg/day). I'm also taking a senior-formula multivitamin, an Omega-3 supplement, Vitamin E, Vitamin C, and am adding Coenzyme Q10. My gabapentin script just got boosted (again) because the leg pain keeps getting progressively worse over time. I'm also on Claritin in the spring/summer/fall, and Valtrex when my herpes flares up.

The thing is, I really wouldn't mind doing this many drugs IF THEY KNEW WHAT THEY WERE DOING!! Since there is no real long-term studies on any of these drugs, much less the combinations I am on, I'm a walking test tube.

 

[Shugardrawers]

Do you get the painful Lidocaine,or the painfree lidocaine

You mean there's one that doesn't sting when you get it?! The one I used to get stung a little for a few seconds then my whole hand would go numb. I don't know why they aren't using that anymore at either the hospital or the doctors office.

I'm so exhausted tonight. Hoping to get some sleep early since we are meeting up with Obi-wan Pinobi and Mean Laureen tomorrow. I'll try to get a good picture of us all. Won't be much sleep at all if the Diflucan doesn't kick in soon. UGH!!!!!

 

[eclectics]

What was that line from the play Suddenly Last Summer? "Isn't it kind of the drug store to keep me alive"..... I guess I'm lucky, just 6 a day, not counting the 5, yes 5, enzyme capsules with each meal! I'm so used to them I can pop them with no water.

 

[Tiggerific04]

But the kicker for me, is something that lots of people find controversial. I had mono when I was in the 8th grade. Since then, I have been diagnosed with "Chronic Epstein Barr Virus". Well, some doctors think that's a farce. Those of us who deal with it in our lives don't think so. I don't care what you want to label it, but I know that since that year my immune system has been absolutely crappy. I have bronchitis (and sometimes progression to pneumonia) every single year, without fail; very often 2 times/year. Same with strep throat, shingles, etc. I evey qualify for flu and pneumonia shots with the severly immunocompromised, even thought I don't have a "disease" that everyone knows about. The difficulty here is that there's nothing that can be done about it. I've gotten pretty good at recognizing symptoms right away and getting proper care before things get out of hand, but you can't stop the chronic fatigue, aches, etc -- and people get really tired of hearing that you're sick all the time.

I also have Chronic EBV. I had mono in my first semester of college and ever since then, my immune system has not been the same. The main problem is that I am constantly dealing with swollen lymph nodes in my neck, back of my head, and behind my ears. They can swell up in a matter of hours and are incredibly painful. After being shuffled around to two regular doctors, an ENT and an Infectious Disease specialist (not to mention all the bloodwork, poking and prodding, chest xrays and cat scans), they decided this must be what's wrong with me because all my tests are normal. Plus, there's the constant fatigue and aches that you mentioned. I was told to "learn to live with it."

And like some other posters I also have IBS (although I don't have the constipation variety, so there's not much the doctors can do for me). I try to stay away from foods that trigger it and I take an anti-depressant and anti-spasmodic that seem to help somewhat. I'm looking into more natural therapies though - enzymes, supplements, etc. Luckily I work for a very small company and my boss has colitis so she is very understanding of the days when I need about 47 bathroom breaks.

 

[JennyMominRI]

You mean there's one that doesn't sting when you get it?! The one I used to get stung a little for a few seconds then my whole hand would go numb. I don't know why they aren't using that anymore at either the hospital or the doctors office.

I'm so exhausted tonight. Hoping to get some sleep early since we are meeting up with Obi-wan Pinobi and Mean Laureen tomorrow. I'll try to get a good picture of us all. Won't be much sleep at all if the Diflucan doesn't kick in soon. UGH!!!!!

Yes there is..I Only had it once. I was waiting for the burn and it never came.I asked what it was and she said painless lidocaine

 

[Virgo10]

Just need a place to whine. I got up this morning to find my internet connection wasn't working. Usually it's easily fixed by unplugging the modem and routers and then plugging them all back in again. Well I did it once and nothing happened so I ended up doing it again. This involves leaning over in a very awkward position and, sure enough, I felt something pull in my neck area. Now I can't turn my head to the left AT ALL! I have to walk with my left arm bent and up against my body or it feels like it's going to fall out of the socket. Not pleasant.

People with back problems will know that if the top part of your back in out, so is the lower part. Now I feel like someone beat me up with a 2x4.

It's going to be a long day. I refuse to take narcotics during the daytime. They knock me out. So we'll look forward to 10 p.m. when I can drift off into la la land.

OK, rant over.

 

[luvwinnie]

Just need a place to whine. I got up this morning to find my internet connection wasn't working. Usually it's easily fixed by unplugging the modem and routers and then plugging them all back in again. Well I did it once and nothing happened so I ended up doing it again. This involves leaning over in a very awkward position and, sure enough, I felt something pull in my neck area. Now I can't turn my head to the left AT ALL! I have to walk with my left arm bent and up against my body or it feels like it's going to fall out of the socket. Not pleasant.

People with back problems will know that if the top part of your back in out, so is the lower part. Now I feel like someone beat me up with a 2x4.

It's going to be a long day. I refuse to take narcotics during the daytime. They knock me out. So we'll look forward to 10 p.m. when I can drift off into la la land.

OK, rant over.

Feel better!!

 

[Shugardrawers]

Oh joy of joys!!!! I think I'm finally over the bug I picked up before christmas! No more IV anti-biotics! Still very very tired but there's nothing unusual about that. Last night Dh said he hoped I'd perk up soon. I tried to explain to him that even though I'm finished testing this new med in Sept. I probably won't really start to regain strength for a good 6 months after that. He just doesn't understand.

Hope everyone else is doing better too.

 

[Tinks]

Ugh! I'm having a bad day. I go back and forth between acceptance and complete and lovely denial. I was happily in denial until I woke up in the middle of the night and unglued my tongue from my mouth. I am scared of Sjogren's. I'm still reading up on new therapies but I'm chicken to try anything. It's frustrating not to have someone "get it". I wish I could find a Sjogren's web site about antibiotic protocols and what to do about them.

I'll be okay. I'm just worried, scared, and want to go back to denial-land.

Thanks for "listening".

 

[LBAK]

Tinks- get Oral Balance gel and use it in your mouth before bed. Keeps your tongur from sticking! Suck on lemon balls during the day to keep your salivary glands open more. Sjogrens is the pits! I know there are worse diseases out there but it's hard to change your whole lifestyle so quickly when sjogrens hits. I produce no moisture anymore. Crying without tears is not pretty, nor is the look of m tongue from being dry. I sure do sympathize with you.
Feel better today!

 

[luvwinnie]

Ugh! I'm having a bad day. I go back and forth between acceptance and complete and lovely denial. I was happily in denial until I woke up in the middle of the night and unglued my tongue from my mouth. I am scared of Sjogren's. I'm still reading up on new therapies but I'm chicken to try anything. It's frustrating not to have someone "get it". I wish I could find a Sjogren's web site about antibiotic protocols and what to do about them.

I'll be okay. I'm just worried, scared, and want to go back to denial-land.

Thanks for "listening".

have you seen this site?
http://www.roadback.org/

 

[Shugardrawers]

How are you guys dealing with a spouse/so in denial? Dh just can't seem to grasp that my entire life has been turned upside down and that all the meds are making my hormones go wild. If I'm not little becky sunshine he accuses me of being mad at him. We NEVER argue, until tonight and boy did it blow I just can't get through to him that I'm tired, I don't feel well and to top it all off I quit smoking 10 days ago. Yeah, I'm kinda cranky!!!

 

[eclectics]

How are you guys dealing with a spouse/so in denial? Dh just can't seem to grasp that my entire life has been turned upside down and that all the meds are making my hormones go wild. If I'm not little becky sunshine he accuses me of being mad at him. We NEVER argue, until tonight and boy did it blow I just can't get through to him that I'm tired, I don't feel well and to top it all off I quit smoking 10 days ago. Yeah, I'm kinda cranky!!!

No words of wisdom on the spouse issue, but CONGRATS on the smoking! I just made the six month mark myself. I know everybody says this, but if I can quit for good, anyone can. Just take it a day at a time!

 

[LBAK]

Congrats on not smoking!I wish I could quit eating. I kind of just ignore my DH when he starts his stuff. Don't have any advice for that. Keep your chin up and feel good!

 

[Doctor P]

I just found this thread and appreciate it just for being here. I have diabetes, serious sleep apnea, recurring kidney stones, am a glaucoma suspect (thankfully nothing there yet), and have functional colitis (which, thankfully, is down to only about one or two attacks per year). I don't always treat my body as well as I should in spite of these problems. And stress increases almost all of the problems, and also reduces my ability to manage them. My diabetes support group only meets 4 times per year now rather than monthly, so that has reduced my support network. The DIS is a nice group of friends and, with this thread, I will be able to think about other people and the support they need which will help me manage my own health problems.

 

[luvwinnie]

I just found this thread and appreciate it just for being here. I have diabetes, serious sleep apnea, recurring kidney stones, am a glaucoma suspect (thankfully nothing there yet), and have functional colitis (which, thankfully, is down to only about one or two attacks per year). I don't always treat my body as well as I should in spite of these problems. And stress increases almost all of the problems, and also reduces my ability to manage them. My diabetes support group only meets 4 times per year now rather than monthly, so that has reduced my support network. The DIS is a nice group of friends and, with this thread, I will be able to think about other people and the support they need which will help me manage my own health problems.

WELCOME!