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twicebitten Posts: 6
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This is a total venting of things pent up inside for months now. Well, maybe years. I think I am doing this in the right place, or I hope I am. I was infected in Washington State. My doctor missed the diagnosis of Lyme 10 years ago when I showed up at his office with a rash and all of the symptoms. He told me it was a spider bite and sent me home. Then 5 years ago I was bitten on the back of the neck and one of my cervical lymph nodes right under the bite swelled up to about 4 inches long and bulged off the side of my neck. It looked frightening. Again I got the rash about 3 days later and all of the physical symptoms. Again the doctor said I was bitten by a spider. Starting 9 years ago I lost the feeling on the inside of both big toes and my legs began falling asleep. By 7 years ago I began having pain the the joints in my lower extremities. All of this was accompanied by what seemed like a lot of viral meningitis diagnosis. Then it spread to numbness in my arms, then "a typical migraines" accompanied by lesions in the brain. Now it has come to loss of cognitive skills, MS and Parkinson's symptoms (tremors, trouble swallowing at times, ripping pains, etc) and RA in all of my joints. Oh, and irregular heart rhythm. I am gradually losing my body and my mind and the progression has been building speed. I moved out of Washington state 3 years ago. I went back in March to visit my daughter who is in college there and decided for some reason to go back and see that same doctor about all of my symptoms. Apparently since he had last seen me he has learned about Lyme and knew before I even walked in that he had on his hands now a person with chronic Lyme. He diagnosed me before even sending out the blood test, but the blood test confirmed it. Lyme and all of its nasty little partners. Believe it or not, I have continued to work up until very recently. I got to realize my dream of opening my own restaurant 6 months ago. The stress of which is what knocked me out of commission and now I have had to let the dream go. The worst part of all of this, even worse than the pain which makes it so hard to live, is the total feeling of being alone. There is no one close to me who can understand what it is like. My family is scattered all over the states and my husband is not coping well with this at all. He can't bear to think with how sick I am or how much pain I am in. And all of the people I know who think this is the common cold and keep asking if I am better now, or the teller who shouts out in front of all of the customers at the bank asking me why I am walking funny, so everyone turns to see what she is talking about. Then the looks of sympathy. I got a dog and have been training it as a service dog (very experienced in it). But I have stopped taking him with me because all of the questions about what he does for me and what is causing my "disability". It doesn't help to explain. They don't understand. Just more questions about, "Isn't that totally curable with simple treatments?" God I hate this disease. Post edited by: twicebitten, at: 06/10/2011 06:32 PM |
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espltd Posts: 173
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amen to that ...people just dont get this thing. I mean I ve been on a leave from work for going on 5 months now and everytime I talk to my boss for updates, he goes ok so you feelin better now ? I keep sayin ummm its not that simple man....and hes like but your taking your meds right ? Why arent you better ? I try to explain this thing till I m blue in the face, no one really gets it until they are affected I guess. It definitely shows you who your true friends are though, for which I ve discovered that my brother and sister in law whom I thought where my friends are indeed backstabbers. |
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goobered Posts: 216
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Twicebitten, Welcome to the club. Woohoo! I am so sorry for what you have been through. My Brother-in -law is the one who keeps asking, "are you better yet?" and he is from Washington...hmmm.....Ok, there have been others. I find that if I can get them to watch "Under Our Skin" it helps. But let me tell you now, I got diagnosed Nov 2007. In 2005, if you would have told me about what was going to happen and asked who would have been there for me, NONE of those people are in my life anymore. Fair-weather friends. Talk about adding insult to injury. And you will hear that from nearly everyone on the forum. That is part of what makes this site so great. And I am a newbie! You can click on my name and read my story so I don't have to repeat. You will see how very much you have in common with people here. I've become addicted. lol. I have even tried getting on when I have really bad cognitive symptoms and then later I will see something I wrote and it sounds like I was drunk (which has NEVER happened) or drugged up! So I laugh it off, knowing that everyone else knows it's just a bad day. It's a great place to gripe, to get good info, to laugh, to just pass time when you can't get out of bed. Sorry you have Lyme, but welcome! Goob "I will not die, but LIVE,
and tell of the works of the Lord!"
Psalm 118:17 |
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waxby  Posts: 4128
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~~~Hello twicebitten, ~~~Welcome! You most definately have arrived at the right place. ~~~Snuggle up against us! You are with friends! We are your peeps! ~~~Come, have some Lymonaide! ~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey~~~Mitchell ~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
~~ "Step away from monkey mind, not tangle ... Observe ... Inhabit your higher self ..." -Mitchell
~~ "Anything is possible, but manythings you think are true, are not ... " -Mitchell
~~ "Grow where you are planted ..." -Mitchell
~~ "Change your future now ..." -Mitchell
~~ “Write your equation … 4 u r the sum of u … “ -Mitchell
~~ “We are largely a product of our environments … how’s your inner environment doing? …” -Mitchell |
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jaime1978 Posts: 2399
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I totally hear what you are saying. This is definitly a lonely disease. There's not a single person in my 3d life that understands, or even tries to. I had one so called friend drop me from facebook (she was a friend in real life) because I had posted something in rememberance of Leslie Wermers a dear friend of mine who lost her life to lyme, and she bssically wrote "you think you're suffering you should see my poor brother with MS, now that's suffering"! so of course lymies jumped all over her, I've tried to explain the disease to her and that it's VERY likely her brother has it, but he won't even see a MS doc let alone a LLMD, so guess what, if you're just going to sit there for years and years, somehow get pain managment I can't seem to, and have no official dx, then I don't want to hear it! At least I've been researching for years, reaching out to others for years, and honestly between all my lyme friends lifting me up and my kids, it's the only reason I'm still here. My own husband doesn't get it. Probably a little my fault because I tend to push myself really hard to the point of exhaustion to make sure things get done, and kids are taken care of, you know make holidays special etc...I don't want my kids to know me as the "sick mom" alhtough that didn't seem to matter, it's how they see me anyhow. I can't tell you how many times they've said "mom I wish you were better" they are going to flip when tnhey find out I'll be having yet another surgery in the fall....God help us all. You are NOT alone, we are all here with you. xoxo jaime 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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singfreebird
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Welcome, twicebitten. I hope you find the support you need here. Mmm'hmm, I hear you, people don't get it. When I was sick, I didn't bother wasting my breath on those who can't possibly understand; I know it's not always that simple, but I've been blessed with a caring family, so I haven't cut out anybody super-important. Now that I'm feeling good I take more time to educate others, but honestly? some people don't seem to want to get better or find out what is wrong with them. There, I said it. I don't waste my time on a lost cause. If they really want to know, they will ask. Pain isn't a contest, but a lot of people treat it that way. The pain you feel is just as legitimate as the pain I feel. Jaime- good riddance to that ex-facebook friend! People like that anger me. I've never had to unfriend anybody, because I don't post much about Lyme (most people don't know that about me), but I've seen people pulling the same passive-aggressive BS. Seriously makes me reconsider the friendship. I agree with goobered (awesome name btw), make 'em watch Under Our Skin. Slap them upside the head with some knowledge. Certainly can't hurt anything. esp: With people like your boss, I just want to start pounding on a desk with a flourish and say "Why. Don't. You. Get. It!?!?!" Rawr. Grrr. Yup yup, just like being rich then suddenly losing all your money, having Lyme disease lets you know who your real friends are... accurately. |
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beensLYMEd Posts: 235
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I totally get this even family that really love and care don't really understand. I don't expect them to understand because I don't understand. How can you go on day after day after day feeling so sore and awful. All the pills and missing out on so much. its like watching the world thru a glass and watching it go by. The guilt for not being able to care for your kids the way you want to. missing picnics and parades. Or just being able to go out and shop or for a walk. I think I want to order a fake leg brace so I can be more convincing while I am at the grocery store limping around. Will I ever be able to run around outside with my kids again? or will this be my life forever. |
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goobered Posts: 216
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Not to be a bummer, but to share that we ARE in this together. Secluded Sitting on the park bench Watching the Merry-go-round Listening to the music But not able to make a sound Hearing all the happy tunes And hearts full of laughter, Wanting to be a part, But unable to enter. Dreaming of climbing on It seems like such a cinch. Stepping out to get aboard, I wake up on the bench. --Goob But we ARE part of life. We are still here. I was just having one of my pity-parties. Fortunately, they don't happen too often! It is frustrating feeling like you are 90 and being limited, but still LIVE!!! We are gonna beat this! Goob "I will not die, but LIVE,
and tell of the works of the Lord!"
Psalm 118:17 |
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steph12 Posts: 3
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I am a 34 year old female and have been recently diagnosed with lyme disease. I am a high school PE teacher and love my job. I am married to a wonderful man who supports me and is always there for me. I wish I could say that about anyone else. I truly would not be here if I didn't have my husband. I still feel like a lonely person and so sad that I have to go through this. I am having a bad couple of days here and I dread going to work when I feel this way. I feel like I can't even talk to anyone, i did tell someone at work and they said to me, "well its treatable right" like it is so easy to feel better. Its like an alien is living in my body. thank you for listening to me. I think I am herxing, bad headache dizzy, feeling like I am drunk. Last year, I wanted to start a family...but now I know it is not going to happen. I was told by doctors I had CFS. Such bull shit. I finally found a LLMD through another friend and found out the truth about what was going on with me. Sometimes I want to scream and yell because I am so mad that this is going on. I feel so sad sometimes.... |
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neska Posts: 1467
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hi steph12....we all go thru this one time or another. sometimes i still feel sad. i have lots of friends. some understand and some don't. maybe it is time to clean out that closet full of friends? now don't say a family is not going to happen. i know of a television person who had lyme, was out of work for 6 months. lost alot of weight. she was seen by a LLMD. she is A-ok now and was given the green light to start a family. we all want to scream. i scream everyday! one day we will see a treatment plan that will elimate all of this. think positive. stress just adds to this horrible disease.... |
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