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12/01/2008 13:11
CaseyLei13
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Sooo, unhappy right now. First I wasted 2 weeks of my life with "Nabumetone" then wasted 3 MORE weeks of my life on "Celebrex" and NOW they want me to take LYRICA. "You'll usually feel the effects after a week or two" SCREW THAT. I have been so patient! I feel like hell all the time I can't do any of the things that make me happy. I am SO ANGRY, I HATE DOCTORS! @#$% ^&*%$ #@@$% &*()*&^^ @#$%^&* (())(*&^ %$#@!#$ %^&^

#$%^%$#$%^&*(*&^%$%^&*^%$#$%^%$#@!#$%^%$#@!@#$%^%$#@oj

uscbjksfcbjksdvcjbvhAshxahh

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12/01/2008 14:37
Jenn56
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Hey i am having a really bad wk,,Im feeling so sick,believe me i no how u feel, just dont even no anymore i see my llmd wes,i think i need the piccline again,4 me2 even think about that thats how i no im real sick again.I was on celebrex 4 over one year it was great BUT i have heart problems fr lyme so i had 2 come off,Some say that celebrex can affect the heart..I have heard GREAT thing a lyrica,my md put me on it i didnt even start it yet,,,

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12/01/2008 14:45
dharma79
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Me too, hun.

I'm sorry we are here. I cry everyday but it is almost always counter-productive. I know it is a stupid BS cliche but we really have to try not to get so caught up in all the negative thoughts because it is all too easy to get stuck there. That said...we ALL have our moments and a good cry can also be just the purge you need.

Maybe it will help to hear that the Lyrica does help me. I take 75mg 3x/day with other pain meds too. I know the Lyrica helps because I sure know if I don't have it. I am probably going to up the dosage again at my next doctor visit. It takes a few days to get used to but the weirdness goes away and it was just a "medicine head" feeling that I experienced which is a piece of cake compared with some of the other crap we have to deal with.

And if it makes you feel better at all...I had a majorly crappy few days myself. It sucks because I'd love to go to the gym and "work it out" but...yeah right! I think we ALL know that AIN'T happening!

Chin up...It's hard as hell but we'll pull through...and feel free to pm me if you need to use some more very creative NON-"family friendly" explitives!

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12/01/2008 19:05
pammie
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I'm so so sorry you're feeling so bad. It stinks I know. This disease will make you feel like you're loosing your life and your mind. It's hard to hear all this positive when you're not feeling well. But you really will have better days ahead. Just keep thinking that. The most important thing with this disease is our attitude and how we deal with what we've been given. We can't stress because it makes it worse for us. I have to constantly tell myself that I'm going to make it through this. I do it over and over. Especially when stuff is not working and I'm being used as a guinea pig but what are my choices. I don't know what else I can do but just keep telling myself it's temporary and it will all be over soon. I might be crazy for thinking that way but it's the only way I can make it through my days.

I wish I could take it all away from anyone who is feeling bad from this disease. But I will be thinking about you and definitely keep you in my thoughts and prayers.

Keep thinking great days are around the corner and you'll be there.

Hugs,

Pam

"I am NOT a doctor and only offer advice".

I agree with and live my life by the following quotes:

"Do unto others as you would have them do unto you"

AND

"Love your neighbor as yourself"

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12/01/2008 19:39
ConnieD
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We all feel your pain,too Casey and I'm so sorry where you are right now. I have been there,too. I have taken every medication that you mentioned plus many more before I finally found my 'cure' with the help of the right doctor.

Are you seeing an LLMD or what kind of doc are you seeing?

Hang in there......and let us know how we can help you. We're all in this together.

Please do not take anything I say as medical advice. I am not a doctor.

Open your mind to the possibilities available to you.

An attitude of gratitude is good 'medicine,' too.

~Lyme Disease Support Group Leader~
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12/01/2008 19:50
AnnF
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I'm so sorry you are having such a rough time Casey. We've all been where you are, you are at the right place to vent, there is lots of support here.

Many of us here are getting well, so there is hope, don't give up.

My son and I are dealing with Lyme, he was in a very bad place several months ago, but thanks to our clinic he is making great progress. There is hope, so hang in there.

Let us know how we can help.

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12/02/2008 07:10
CaseyLei13
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Thank you so much for your support, I really just needed to cry. The aggravation overflows and it must go somewhere. I took the Lyrica last night, it made me feel drunk. Still in pain but somehow not caring. Even in this moment my wrists/forearms hurt like they did when I was in a bad ATV accident. With all this I have decided to try and get out of the house, and drive to RI from here in Fairfield CT, to go see my cousin whom I am very close with. I am getting the idea that I am supposed to just 'suck it up' and take care of my responsibilities. Does anyone else get that feeling of detatchment? That sense of the lights are on but no one is home, because the pain turns you into something different? It makes me quiet and the look on my face is somber all the time, I can't hide it. It is VERY hard for me to just 'deal with it' as my brother-in-law has, (he had the pick line b/c of lymes)He doesn't show anything EVER as far as not feeling well. I can't tell you how incredible it is to have found this support group, I know there are others that feel like me, and my heart goes out to everyone here.

PS I am currently seeing an Internist and a pain center. No LLMD, the lymes has gotten better since the doxy but I seemed to have leveled out in a nasty place.

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12/02/2008 08:00
dharma79
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I totally feel like that too!

I was actually just thinking about that this morning...how it is an absolute wonder to me how I make it thru each day...but somehow I do...so I just keep chugging along on auto pilot. I don't know how long I will be able to keep it up for but...Yes, life doesn't stop because we have Lyme...And my family needs me to pull my weight and I will always do whatever is best for them and take care of my own responsibilities as long as I am able, even if I do have to do it with a bit of a grimace and a buttload of pain meds.

Call it what you want...

Sucking it up...putting your game face on...taking care of business...

Perserverence is an essential quality of surviors.

Lyme sucks...but we can at least let our hair down here and take the mask off and try to heal our softer side too which is just as important to the recovery process.

Stay strong! Here if you need me...

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12/02/2008 08:30
cmany
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Casey...

It does suck and it is not fair. I have been battling this friggen disease for nearly 30 years, and I am not one of the lucky ones to find remission. Some good months here and there...but no remission.

I have had chronic pain since about 16 - and the nerve pain was not far behind it. Lyrica has been the absolute best for me pain wise...YEA it helped me pack on a few extra pounds - BUT without it I would truly be suffering constantly. It lessens my pains to a place where I can ignore them...if I were to take a few minutes to "tune" into my body...the pain is at about a constant 4 right now - with tons of shocks and stabbing jolts...but I can ignore for the most part upto level 4 pain...and the Lyrica enables me to do that. And I also take Lortab 2x's a day. This is coming from someone who used to take 900-1200 mgs of Neurontin, 120-150 mgs of Morphine, Skalexin, Soma, Naproxeen...I used to have a HUGE pain med regimin...The Lyrica was a god send...

What are you doing for the depression? Are you on an RX's for that? Lexapro had worked the best for both my depression and severe anxiety for me...and I only had to be on it for about 9 months - then I was able to function on my own...BUT it wasnt just the Lexapro...

When I was on Lexapro, i also did about 3 months of Rifampin - which is a strong abx...And then I took me time. My hubby was working away from home, so I had lots of time to deal with my disease and myself. When I came to terms with ME - everything about me...and what I needed to change about me to get better - in every aspect, it became easier. This disease, and the people in my life, and how I handled it ALL - made for a bit of a mess.

Let yourself get angry...feel what you feel. Let it come and then you HAVE to let it go. There are just somethings that you cant change. And there are things that you can change...

The worst thing that you can do is let the upset, anger, frustration, etc...consume you. Depression can be your WORST enemy - and it will turn you against yourself. I have been through many levels of depression - and there are places that I refuse to go again...You are becoming a warrior here. Allow yourself a set amt of time to feel your worst emotionally. Then when that time is up...make yourself move on. For some people, when we learn to accept our feelings and pains, and stop fighting it, the pain lessens.

Believe me, this is all easier said then done. I have begged for death because the pain is so bad. I have resolved myself to being ok with death, if it eases my pain, and stops my family from watching me suffer. And obviously, I didnt get death, but the pain did lessen - because I stopped fighting against it. Rather let it run its course...

OK - been rambling A LOT here...Hang in there. You will get through it...and when you do, you will find that you have become a better and stronger person. There is so much that we learn from this...I think I have learned so much about being compassionate...but I will leave those stories for another thread...

Please, feel free to PM me any time - if you need to vent, I will always listen - and I dont take things personally - unless you want me to ...

Christine

I know what I am and I know what I am not

Never put it past this disease to be the culprit - but we also cant brainwash ourselves into believing that it is the only thing

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12/03/2008 06:40
jaime1978
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Casey,

have you been tested for viruses? Most people who have lyme alone don't have the pain that we have. I have pain that on a "good" day would send a normal person over the edge. From research, I'm lead to believe a lot of it is activated viruses. (I had 12 cortisone shots into my spine....BAD BAD BAD).

I know where you're at hon. I've been crying all day today too. Woke up in cold sweat, got the kids up, threw up in the kitchen sink, but nothing to throw up, because I can't stand to eat, try to get them fed, lunches made, and clothed, and off to do my own blood work. every little tast is like moving a mountain. It's crazy. I usually try to stay positive, but this has been by far my worst month in 2 years, it's ruining our holidays, I"m in bed by 7pm, we usually enjoy putting up our tree, talking about the ornaments, etc, I couldn' t even stand, layed on the couch, then fell asleep while hubby and daughter did it. breaks my heart.

all I can say is people do get well, I see it happen, and I WILL be one of them, and so will YOU, we will give our testimonies, and keep on keepin on.

pm me anytime, best way to get a hold of me.

warmest regards

j

Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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