I am new here in posting, but I've read quite a bit. I am amazed at the level of support you all offer each other.
My complaints, etc., are "same old story" in most ways ... but here goes. I apologize in advance for any whiney-ness.
I was very active in the past on some fibro boards, immunesupport, gauifenesin protocol are a couple.
My DH convinced me for a long time that my activity on these boards acted mostly as a catalyst for new symptoms and an infatuation with beng sick.
He's been very slow to come around to the whole fibro then Lyme thing. Understandable I guess in some ways as we both long for the old healthy, fun, kind, energetic me.
I have over the past few years questioned my sanity as I've tried to navigate my personal choppy medical waters. I am deeply pained at how little I seem to have to "give". It's a sort of identity crisis in that I have always been the helper, not the helpee.
I'm in what I think of as a second level low.
Last September was my first level (big time) low. I was in school (Nursing), working (at a level 4 trauma center), taking care of my kids (one very ill w/ JRA), trying to take care of my ever evolving physical/mental/emotional problems, struggling to keep marriage afloat.
The walls came tumbling down right after I utterly failed my first exam in the fall. I was basically forced out of the nursing program. I had a complete breakdown.
I quite working and ran to my mom's seeking solace, abandoning both my kids and husband. I cried for weeks, it was all I could do. I thought about killing myself about every 5 seconds.
I think I started looking at Lyme in earnest around this point. I'd pretty much suspected it for a while, but I thought "just get through school ... then you can find a LLMD and work on this". Pretty stupid.
I found a lady online w/ a number of a lyme/suicide hotline and called. She talked to me for hours. She gave me some names and steered me in the direcion of a local support group. She was incredibly compassionate and I am forever grateful.
I was able to back off "the ledge" enough to go home to my very confused family, get in touch w/ the support group, and start the process of getting a LLMD and picking up the pieces.
I have not really gotten back from that point... hence the "second level low". It's hard to accept. I've made some progresses and had some setbacks.
I'm impatient. I think, for me right now, the most difficult challanges are mental. I seem to have lost that optimistic part of me that I always assumed was just hardwired into my brain.
I've become withdrawn in many ways. I feel like my public face is all an act, with the outside not matching the inside, and that in and of itself is very draining. I've always placed great importance on being authentic.
I eventually, through the local support group, found an actual local LLMD. This was key to me because after 7 years of fibro and it's related expenses, loss of work, etc., we were pretty broke. I thought ... this is great, this is progress.
However, this local LLMD as it turns out, is in fear for his practice, is being bullied by BlueCross, and is basically scared $^%#less.
He says I have Lyme, or probably STARI, ... that clinically I fit. BUT, as he has become so gun-shy, he dx's me w/ "acne" (which I have had since I had my kids) and gives me minocycline on a "pulse" of 2 days on, 2 weeks off.
He says that this is supposed to be a "livable" dose ... meaning we are tx=ing according to the bacterial replication cycle and the Lyme strain I have is probable a slower replicator than what you see up north, ... but I should be able to go about my life.
I have had no testing for myself. I'm not sure how I feel about that. But, I herx like crazy from these pulses.
In fact, there is just about nothing livable about this pulsing as far as I can tell. My first few rounds of mino had me hallucinating, unable to walk a straight line, unable to speak a coherent sentence ... like a major disconnect between brain and mouth.
It has gotten better. I am more tolerant of the herxes now in most ways, except for emotionally. I just cry and cry and it is almost primordial ... coming from a place I can't even name.
But, it passes, although in the midst of this type of herx, it seems as if it never will. So, based on these responses, I suppose I am a neuroLymie. Yippie.
I also had to make a decision. Back to school or not. I had one chance to get back into the program or just throw away years of school. So, I decided to go back.
I'll know in the next month or so if that was a mistake or not.
But, some part of me just has to keep trying to move forward in life, despite these super giant flashing signs that I should take it easy. Taking it easy has never been my thing.
I've always been happiest when I've got a thousand things going on at once, with never a dull moment. It is torture to be forced to be still due to my revolting mind and body.
Probably, most importantly, is the issue of my kids, their mounting health problems, and my lack of parenting.
My son Drew(7) has never really known a well mom.
My older son Zach(11) is as sick or worse than I am. As a child, I don't think he knows what it's like to not have pain and therefore has an acceptance and endurance that constantly amazes and humbles me.
My husband and his family have been quite hard to convince about the kids being sick, esp Drew as I think he's been sick from birth and it's always been things that can be "explained" away.
But my mom radar has been going off since he was born, but no one would listen to me about it. Always too vague, never severe enough to warrant action.
After Zach's last visit to his ped rheumy, and this rheumy's statement that we don't have Lyme here in TN and that he just flat out would not run any Lyme test, I just had it.
As much as I want to try and educate doctors and at least try to get them to open up to the possibility, I am just flat over it.
Now, I was spitting mad and too darn foggy to make a clear plea to this man. But, I think even if I weren't foggy, it would take a miracle to get this person to question his very entrenched belief system.
OK. I constantly berate myself on my parenting skills' decline. It a terrible mix of sickness between me and my boys.
I can't seem to tolerate much of Drew. He is so hyper, emotional, so very needy. He is also so sweet at times, smart, and just wants attention.
I'm worried that I'm going to scar him for life with my ups and downs, crazy neuro-herxes, and my less than adequate ability to cope with his needs.
Zach has become wise beyond his years and it hurts my heart to see his childhood go by with less and less normal life experiences.
Four years ago he had ITP, a disorder characterized by extremely low blood platelets. He got through that pretty well and in about a year it was officialy in remission.
Then about two years ago, he started limping. By the time we got into a rhuemy (had to jump through firey hoops), he couldn't walk up stairs without help, couldn't get into the tub, couldn't make a fist or write.
He is much better than that now. On Plaquinil.
He had a little (understatement) setback after he was playing in our front yard and chased a ball into our neighbors yard and was inexplicably attacked by their large boxer which tore out an orange size chunk of his arm.
200 stitches when they stopped counting. I don't know if the massive abx he got at that time is/was a good thing or not.
OK, think I got sidetracked there. Back to last straw w/ rheumy. It was the next day that I got through to Dr. J in CT.
We got a WB for both boys. I didn't tell my DH and I put the tests on credit card.
Drew has more positive bands ... I guess because he is the least sick and has best immune system.
I dropped the bomb on DH after results came in. I think he is at some level of acceptace, and proof, as marginal as it is, helps tremendously. We are now preparing to go to CT early Oct.
Actually, I may not be able to go due to school. It is a strange phenomenon, but as one friendly nurse practioner put it to me recently, "Nurses eat their young." Meaning, as a student nurse you are just not allowed to have any personal or heath problems. Period. Or, you are eaten for breakfast.
I don't get this, as nurses are supposed to the compassionate ones. It just doesn't seem to extend to fellow nurses or nursing students.
Anyway, I'm trying to work within that system, get through it so that eventually I can effect it.
It's been from the start a "if ya can't beat em join em" kind of thing. And, it too late to turn back now. But I have to keep ALL of this, all of our struggles, to myself for fear of recrimminations.
I am trying. Emotional herxes on top of physical make it one of the hardest things I've ever tried to do.
So, that's my spiel. I am learning. I don't do everything, heck, nearly anything, right.
Too tired for any complicated but beneficial diet, too emotional to trust myself, too scared to have much fight in me, too lonely to suffer in complete silence, too proud to ask for help, too distant to really parent my boys, too confused to be much of an advocate, too tired to "do" this or that no matter how good it is supposed to be, and thankfully, too stubborn to die. As my subject line says, I am weary.
Now, I am supposed to be studying our wonderful cardiac system, and I have taken much too long to write this self-indulgant narrative, but I hope to be able to check in here more often.
I hope to be able to offer support where I can. But, I guess I am still pretty much a newbie, so I might just have to ask for support more often than I can offer it.
Thanks and wishes of peace,
Hayley
If you'd read this far, thanks. I know these are not new stories or unique themes. I'm sure you know that much is left out, but can fill in the gaps with your own experiences.
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
All I can think is I wish I could give you a big hug.
I hope you can keep up and do what needs to be done and get the medical help you all deserve.
Oh my heart goes out to you. I am about 1 and 1/2 hours from you. Do you see Dr G in Knoxville? I know he's been having tons of trouble with BCBS.
I am wondering if your son actually has lyme too?
Do you know Linda? She is in Knoxville and is in charge of a support group. Let me know if you need her contact info, she has 2 young boys as well.
pm me if you want to talk
I'll be out of town for a couple days
-------------------- Daisy Posts: 122 | From at the computer | Registered: Jul 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Hayley. Welcome to our little group. I loved your introduction. You write beautifully and honestly. Your plate runneth over, for certain. You need some support, already. Hope you will come by often and get it!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
Hayley, so glad you copies/pasted your post over here too as Tutu suggested. You'll get plenty of support and some suggestions. Bettyg
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Boy, Hayley, your story speaks for many of us here who don't have the ability to put it into words as you have done so beautifully.
Try not to beat yourself up over things that are out of your control. Remember the Serenity Prayer:
God grant me....
the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
You seem to be on track with getting diagnosis and treatment for you and your boys with what is available to you. You can't ask more of yourself than that.
Welcome to LymeNet!
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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bettyg
Unregistered
posted
up for more support and suggestions Bettyg
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