posted
You know how it feels like it's taking every part of you to just persevere and keep trying? Then, on top of that, you have to deal with medical professionals telling you there's nothing wrong with you, or that your problem is mental?
I always prided myself on how tough I was. Looking back now, I guess it was kind of stupid, but I was proud that I never let anything "get" me. Or at least such that anyone would know.
Monday, I was frustrated while being worked on by a bodyworker that I've been going to. He was doing the same thing for the 95th time, and guess what... I didn't totally have faith that it was going to work. I made a suggestion that we see if the chiropractor (across the hall) was available' that he rents space from and that he also sees.
Reason being, the chiropractor had not been able to see the problem and right then, the bodyworker finally had it to a point that just possibly the chiropractor might be able to see it and get the bone back in. Just possibly.
The bodyworker has always said that he wasn't good with "manipulations".
He was a "insert colorful name here". Now, he doesn't want to work on it for awhile. It's like I'm being reprimanded. I JUST WANT TO GET WELL. So now, I sit here with no hope of improving (as far as the bone out of place is concerned) and just hope I don't backslide too much. I just keep remembering his sneer.
I'm sure however, that the allure of all the money I was paying him will win out and we will start again. I just so much wish I didn't need him.
Of course, I don't seem to be able to get through my head that these people really don't care a flip about really fixing you, it's about their egos. You think I would have learned it by now.
Then, to top it off I called my oldest, best friend, that I've known since I was 13 years old. He told me that I need to stop going to the people "on the fringes".. meaning alternative and go to Mayo or something like it.
He also said that either something mental was wrong with me, or maybe it was physical. It just broke my heart.
If anyone on the face of the earth knows me, it's him. He knows how tough I am. He knows that I tried traditional medicine. They had no clue of what the problem was, but could see some of the orthopaedic problems. I went to some of the best in town and I finally was sent to a pain clinic and given high dosages of morphine and muscle relaxants and told to live with it.
Me, being me, told the doctor that he could learn to live with it, I was getting over it.
I knew I was screwed up physically in a number of different ways and quite possibly, some of the things I had done to fix it, made it even worse. Not possibly... probably.
I have tried as hard as I know how to get over this and I remember the days that I had to literally count the seconds to make it through the night.
By the time I made it to the LLMD, I had no idea I had lyme disease. I had just heard he was good with chronic pain. He told me I had Lyme Disease and as it turned out, I had it so badly that the lab quit counting. He also validated the orthopaedic problems.
I felt like screaming at the top of my lungs... It felt so good to be validated.
After awhile, I realized the general public, including me at the time, knew nothing about Lyme Disease.
Like I'm sure a lot of you, there have been many times that I've wished I had cancer or something like that, that everyone understood.. had a protocol to treat it and you'd either be cured or would die. It would be over one way or the other. At least you wouldn't be doubted.
Finding out what my best friend really thought has really dropped the floor out. You'd think that they'd just believe you and if they didn't understand, they'd read something. But, instead, since they've never been through something like this, they make their mind up.
I guess in a way, I understand. Before this, I used to think that you either took a pill, got it operated on, or even better, just "toughed it through". Which is probably why everything got so bad in the first place.
I just can't take going through traditional medicine again, even to appease my friend. Especially Mayos. They're not going to know. If I have one more person tell me that there's nothing wrong or that I have emotional problems, I think I'll scream.
Yes, after being bedridden for so many years, having my career destroyed, etc., etc. etc., I'm sure I'm going to have a few things to get over emotionally when this is finally over. But, cut me some slack, this is not a mental problem.
How could people think that we enjoy this. Ruining our careers, destroying our finances, and along with that, many of our hopes and dreams that we had saved for all our life. Yes, I don't know about you, but I just LOVE being house bound. It's really just so much fun.
He also told me I concentrate on fixing this too much. He says I need to get out. I would really love to. He also said that if he sat down and concentrated on his aches and pains, that he had a lot too.
I just told him that I wasn't making it up. That I hadn't changed. I also told him that I could give him something to read if he wanted it... he didn't respond, so I guess that means no.
Don't you all kind of feel that if people really understood what he had persevered and had to fight through, that we almost kind of deserve a combat medal, when we get well? At least, I wish they'd try to understand.
Sorry this is so long and rambling.
Posts: 856 | From Texas | Registered: Jan 2005
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posted
I'm so sorry you've been through all this....esp. your friend doubting you. I went for 6 years being undiagnosed and Dr.s called me crazy, but my family and close ones (most anyway) stuck by me. I feel so fortunate. I can't imagine how bad it would hurt if your closest friends/family didn't believe you.
And this disease is depressing anyway. I hear you about the cancer thing. I know I don't really want cancer, but I wish this were more clear cut.
Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I understand your hurt and frustration. This disease is so isolating. I had a friend who described lymenet as a cult. (I used to forward or copy interesting posts to her; her 13 year old daughter had 5/6 bulls eye rashes this past June and received doxi 200mg for a month.)
We with lyme live with daily worry about insurance - our doctor's medical licenses - our family's futures.......
Not much of a quality of life.
Everyone here understands your feelings and reaches out.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Man, when I read this I realized I could have easily confused it with a post of my own a couple years back.
I'm feeling your pain, and I'm sorry.
it even came with the freind (best friend -- of 25 years) .. She was sighing loudly when I called petrified because my son and I were loosing our brain capacity at really rapid rates..
and proceeded to explain that she happened to know that Lyme disease is no big deal.
Jeez...if I had only listened to her maybe I could have been saved all this trouble
Ugh, all good points you are making..on why/how someone could think thses things..
I would think..if it's my friend and they are suffering, I don't care if they say they have 'purple hairy spot disease' .. contracted from snarfing down too much Cap-N-Crunch after midnight..
I'd be there.
I remember how much that hurt. But.. they really just have no clue.
On the rest of it..
I absolutely do think we deserve a combat medal getting through this.. and don't worry, your strength is clearly evident.
It's there, it is just carrying a heavy load right now.
If you want my advise..stay the heck away from Mayo! I'd stick with an LL and/or a naturopath or herbalist who is ATTENTIVE to and supportive of the LL work. You don't need ANYTHING making you feel worse right now.
(that goes for the unsupportive friend, too)
For me, it was effective with doubting family to just say flat out that my son and I were hurting - this was very serious , and that I had to work very hard to get us well. Therefore, I can't afford time or energy explaining my disease to you or sencing that you do not take it seriously. I can't afford that kind of drain. I do need support, tho. If you can give it, I sure do need it now.. if not, that's OK, but I can't spend time with you in that case.
And I stuck to it. That worked OK (for me) and made me feel validated as well. I did have to be prepared to trim some fat, tho.. meaning the ones who weren't there, I really did not see. But I don't regret it.. in my case, I really think it would have cost me too much to be drained in that way.
I'm sorry you are in so much pain right now, but reading between the lines of your post and your stature -- my best guess is that you will be finding your way through this.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
hi T-lady. all i can say is i understand-i have been there-i'm in awe of how much you wrote and how clear it was...i can't do that anymore.
i lost the friend and many family members and learned to protect myself from the negatives---friends, docs, therapists-stay away once you know they are not with you 100%...and be gentle with yourself...take care.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Yes, I guess that is good. I remember when I couldn't do that either.
I know I am getting better, it just crushes my soul to know that the last person in the world that I would think didn't believe me... didn't.
I just keep hearing him say the "mental" thing and the thing about me concentrating on it too much.. that he had aches and pains too. It really hurts.
I seriously have a major thing about being called a wimp. I just can't believe he thinks that. I mean, he has to remember many years ago when a horse kicked me in the knee (believe me it hurt like blanketly-blank). I somewhat nursed it for a couple of days, but never went to the doctor.
I knew it was messed up, but I didn't want to miss what we were doing with the horses. Many years later I finally went to an orthopaedic doctor. He kind of brushed it off when I told him I was pretty sure it was messed up.
I recall him saying that it couldn't really be that bad if I had been getting around on it all these years. I repeated that I thought it was messed up.
He ordered an MRI. The day after, I got a phone call from the doctor's office telling me to come right in. The staff and the doctor's mouths were practically gaping. They said that the horse had broken my knee. It was termed "deranged".
I remember them asking if it didn't hurt. I told them ... "yeah, it smarted a bit". Needless to say, I got their respect from that day on. If I ever said something hurt, they really snapped to.
For some reason, I was always proud of the fact. So to hear now that my best friend doesn't believe me, and probably hasn't for some time, just breaks my heart.
Even if I'm able to get over this, he'll just look at me like... well, you finally decided to "buck up" or resolved your emotional problem.
He has been a constant in my life and I love him dearly. Other people I could cut out of my life, and I guess, I really have, but him, I don't know.
I'm not sure what step to take at this point. He didn't seem interested in reading something and to tell you the truth, I'm somewhat irritated that I should have to even do that. HE SHOULD BELIEVE ME.
It really makes you feel alone, huh?
quote:Originally posted by lpkayak: hi T-lady. all i can say is i understand-i have been there-i'm in awe of how much you wrote and how clear it was...i can't do that anymore.
i lost the friend and many family members and learned to protect myself from the negatives---friends, docs, therapists-stay away once you know they are not with you 100%...and be gentle with yourself...take care.
posted
I am sorry your friend does not understand. I have no suggestions how to make him understand, but only a story of my own, that'll once again support the fact that sometimes the people close to us let us down when we need them most...
Last January, I was tested for Lyme Disease. My mother was very sure of the fact I didn't have it, and when the test came back to support it, she didn't buy it. A week and a half after the diagnosis, I ended up in the hospital with meningitis, encephalitis, and other Lyme related complications. When I called her from the ER to let her know I was being admitted, she said she didn't know if she could make it, and that I needed to make sure I was actually sick before agreeing to stay in the hospital. When my boyfriend AND his mother called her to let her know they didn't know f I'd make it through the night, she explained to both of them that she couldn't fly out to Virginia (I'm originally from WA), because she was expecting a litter of puppies. The whole time I was in the hospital, my boyfriend took care of me. He was there for almost every test, and layed in bed with me while I slept (so he could attack the nurses when they woke me up). My mom, on the other hand, called me every other hour to tell me I didn't have LD. When I was released with a PICC line, and flew home, she told me she wouldn't drive me to the emergency room, and I couldn't borrow a car to drive myself. I took my stepdad's rusty old truck (with no brakes) and drove the 20 miles myself. When I flew back to Virginia (because dealing with her and my LD was just too much), she said I was imagining things when my hemoglobin dropped and you could literally see through my skin. She was persistent in telling me (on my way to the hospital by ambulance from my Drs for a blood transfusion) that all I needed to do was take some vitamins. That was the final straw. I didn't talk to my mother for 8 months. I missed mothers day, and her 50th b-day. Do you think she's ready to admit why I stopped talking to her? NO! It was all in my head, she's perfect, I'm a brat, and my imagination got the better of me. In her eyes, I am perfectly healthy. Even HER best friend thinks she is wrong and kicked her to the curb. Her best friend now calls to check on me. My mother still doesn't.
I know this isn't very encouraging, and all you want is the one person that has always been by your side, but sometimes they just can't handle the truth. In my experience, it did nothing to hold on. I had to cut my losses and take time to regroup. Now that I am not as close to my death bed as I was before, I talk to my mom. She admits that I am sick, and Lyme Disease is bad, but I know that she'll never give me the level of support I need, and I can do this without her (I already have).
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
He has been a constant in my life and I love him dearly. Other people I could cut out of my life, and I guess, I really have, but him, I don't know.
I'm not sure what step to take at this point. He didn't seem interested in reading something and to tell you the truth, I'm somewhat irritated that I should have to even do that. HE SHOULD BELIEVE ME.
You could consider telling him what you told us, about how you feel, and offer him a well selected piece on the seriousness and complexity of Lyme, and see what happens.. he could come around.
I would just try and not let this eat you up in any event.
I know it can, it really hurt me..and by all means you should not have to feel this way.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
My heart goes out to you guys....anyone that has to deal with a doubting loved one. It is bad enough that most of the medical profession doesn't believe us. We need support!!!!! Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006
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posted
Well, in thinking about all this again, and reading the other thread on the same subject..
I now recall I was really torn up over this at that time.
I didn't just jump to my 'policy' so easily. It came out of necesity for me, and going through it there was allot of pain.
It very much impacted my health and emotions at the time. We all have completely different circumstances and possible outcomes in these relationships. Just the pain (and the truth) is the same. I'm sure you'll know what's right to do.
Just be sure and stand true to yourself no matter what.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
t lady-i rode, taught, trained horses for 40 yrs before i had to break up the farm when i started treatment in 98.
last oct 1st i fell and broke my pelvis and walked on it for 2 weeks until i was hospitalied for a week (it didn't hurt any more than my other lyme pain) they didn't dx it in the hospital-they said the pain was referred from my lower back arthrits-wanted to give me steroid shots INTO MY BACK!!!!!...thank god i said no.
at my 2 week ckup i said this is worse not better...how do you know its not bone cancer-the doc laughed and ordered and xray to shut me up i guess and low and behold-a fractured pelvis.
i don't think of myself as a wimp either! guess we have a lot in common with horses and broken bones!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
it's really amazing how many people walk away because they can't deal. sometimes it may feel like you can't go on with the support you have because it isn't enough, but somehow the universe or God or something allows you to cope and expand your ability to tolerate that which is often intolerable.
about seven years ago i had my hip replaced and the people i thought would be there, were not. it made me very sad and mistrustful for a long time.
i think i have mostly forgiven those people and understood that their behavior came from ignorance or fear and not because they didn't care about me.
still, it hurt like hell and i felt so alone i thought i would die.
the lyme gets to me also and I have lost people because of it, too. when you have yourself, you cannot be lost.
feel beter
hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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posted
It's so hard to have something that doesn't show. It's so hard to feel so incredibly bad that you stop functioning at more than bare minimum. "Why don't you just go get your hair done? go get some excercise? take a trip? why are you so lazy and disinterested in everything? why are you such a bummer? why don't we have anything to eat?"
I've been sick for so long--hardly anyone I'm in contact with any more understands. I think by attempting to empathize, the other person feels bad, too, and then gets frustrated and blames you. That old answer "we're just getting old" or "I have aches and pains, too, and I manage"-- well, it's just asking too much of most people to understand.
I had two children without anesthesia. What I've been through with my constant health problems THE PAIN makes that seem, in retrospect, like an interesting adventure. (Well, it was.)
What other people think of us DOES matter to us. We aren't wimps, we aren't weak, and we cope with more than anyone should have to cope with. It is more in my nature to just write off someone who is as insensitive as your good friend. I hope, though, that you can find a way to forgive him, and that he can find a way to say he's sorry to you.
This is one reason why I prefer cats and dogs to people. In fact, I think I prefer my goldfish to most people!!! Lynne.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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posted
first of all do not appologize for "rambling". I am one of the biggest ramblers of all. I have not been on this site reguraly for a while.
I suffer from depression, SAD and anaxiety from being chronically ill for almost 20 years. Yes, mine got the name of lyme disease almost 3 years ago. I have not been able to work, spend my time trying the best I can to eat right and get some light exercise during my good days.
My friendships have suffered greatly. I have a real 'type A" personality and my friends are not used to seeing me down most of the time. My marriage is all but over and my daughter got so stressed out this year that she had to take a leave of absense from high school.
I have stuck mostly to traditional medicine because like you I spent a lot of money on alternative massages, adjustments, acupuncture etc with no relief. I feel best when I can at least ride the exercise bike for 20 mins and stretch. I also lift very light weights and go slow. I eat the best I can--mostly veges, fruit and lean meats, legumes, whole grains and fish and nuts.
I moved when I was at my worst to where I live now and I do not have a single friend in this town, not one because I have been house bound too. That is why I came here just about every day for a long time. i HAVE NOW FOUnd that I am starting to enjoy spending time with myself. I have always taken care of everybody else and let myself go all my life and now I try real hard not to do that any more.
Does it suck??? He** ya! But what are we to do. I hate the doctors too. My case is unusual because halfway through my treatment I developed liver disease (NASH) and I am no longer allowed to take antibiotics. I have not been able totreat the lyme since Novemeber of 2004. It stinks because slowly a lot of symptoms that went away are coming back and there is not a darn thing I can do about it. I just try and live for today.
Trust me I am not always that spiritual. I have been having a real rough time right now with SAD seasonal defective disorder--in plain english I get more depressed around the holidays and winter.
You made the statement that this disease is not mental. I beg to differ with you. The bacteria in this disease is so insidious it affects our moods, our perception of things, our memory and our thinking. I DO suffer from depression and whether it is due to being ill all these years or just is--I take my antidepressants to feel better so I can function and have the best quality of life I know how to given the circumstances. Just like I wear a patch for pain and have for two years so I can move.
I am just trying to say you are not alone. a lot of us are in the same boat. Out of everyone I know the only ones in my court are people on line, my 11 yo son and my lyme doc. for me after being told I was nuts by about 50 doctores over the years, I feel pretty good about the fact that I finally have a name for what has meade me ill all these years. Like you I have wished it was cancer, at my worst I have asked god--no begged god--to kill me. Today I chose to live and cuddle on the couch with my son and watch a movie.
please feel fre to write me
Cathy
-------------------- There is light at the end of the tunnel. I went from existing to living again. You can too! Posts: 192 | From Myrtle Beach, SC | Registered: Mar 2004
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