I haven't posted much lately and I have to aplogize, I still am active with regards to reading postings, just not sure what to say in posting anymore.
I'm still fighting this horrbile disease, still on the Bixain and Plaq and still suffer with the air hunger and no relief.
I have a question, I have now been fighting this for 7 years and needless to say it has put a strain on my marriage, I feel bad for my husband , he is actually the one that continues to seek help for me but... He gets so angry and frustrated and keeps telling me he just can't take it anymore.
We've been married for 10 years, 7 of which I have been ill. We have a 6 year old girl and between my illness and taking care of the daughter I think he has reached a point of no return with our marriage.
He has his own problems with family members dying of cancer, a stressful job and then has to deal with all my issues.
I have run out of things to say and or do, I try hard to hide all of what I am going through but can only hide so much.
I still think he questions what I have and if I will ever return to normal again. He really is a loving husband but he is consumed by worrieness as such it gets him angry and frustrated.
Any words of wisdow I might be able to share with him? as always thank you to all for what you do , it means alot to us that are suffering
Kind Regards
Posts: 38 | From New Hampshire | Registered: Sep 2004
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
i just don't know what to say but I understand.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I would suggest getting some help...counseling with someone who has dealt with people with chronic illnesses. There are so many things to deal with (i.e. emotions regarding the present/future, logistics of maintaining house/child, personal relationship) and having someone to try to distill the actual issues and facilitate productive conversation/solutions might really help.
Hugs.....
Posts: 561 | From mass | Registered: Jul 2007
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posted
I do understand, as my illness has also put a strain on my marriage.
For years my husband thought I was a hypochondriac.
Now, even though I have a name for the illness, I often feel like he doesn't really care enough.
And even in my moments of thinking he doesn't really care or understand how hard things are (and have been for so long) the rational part of me knows he does.
When it comes down to it, he is a great husband, provider and father.
I think men have a different way of dealing with conflict.
I think many want to run away from the problems when it becomes too much to bear.
And I think a lot of times their pain can turn into anger.
Maybe you could tell him you want to be more understanding of how hard this has been on him, not just you.
Tell him you want to give him the emotional space he needs to grieve, too: grief over 7 years "lost" in the illness, grief over seeing his wife sick, grief over not always having the right thing to say...
Try to focus on making your times together not just about illness.
Force yourself to stay off the topic, even for days if you need to, just to get some relief from talking about it, as hard as that might be. (It is for me!!)
If he is a good man and you are a good and understanding wife, he will stay by your side...
Let him know you are both in this together and you want to support him as he has supported you, even if that means counseling together.
I am definitely not an expert in marriage, but I hope my advice helps you:)
I will reread what I wrote when my husband is frustrated with me or vice versa!
Posts: 209 | From maryland | Registered: Aug 2007
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posted
Well, I can post a bit about what it feels like to be "on the other side." I love my husband, am very active in trying to help him get better, am changing careers to find one that will provide benefits and better earnings so I can support us if he can't, take care of many of the things I didn't even know he used to do, etc.
So, I am overworked and stressed. The hardest part is when that is combined with a bad herx and my husband completely emotionally withdraws. I understand on an intellectual level but it is very difficult to deal with emotionally.
I've only been dealing with this for 2 years not seven. Also, our children are in their teens and we've left behind those years where you put all of your energy into children and there's nothing left over for the spouse.
The best thing you can do is tell him you love him and show him you love him. Try to limit your "tuning out" as much as possible.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Thank you all for your advice, I always take it to heart and learn so much from it. I try to hard my feelings and pain from him most of the time due to him getting so frustrated.
I guess I can understand it but at the sametime worry so much that he may end up cracking up. I know with his father he is dealing with his dying of cancer and the loss of his sister a few years ago.
I think he looks at life as though he was just dealt a bad hand and nothing goes right for him.
He knows me and can read everything going on with me so almost impossible to hide anymore. I know he still questions weather this is really the root cause of all my problems or is it something else.
My list of aches and pains is longer than some kids christmas list .
I think from a marriage point, marriage is wrapped around so many things and the only thing I can offer is love and caring , not much more during this difficult time.
Thank you again for listening.
Posts: 38 | From New Hampshire | Registered: Sep 2004
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posted
I think it is admirable that your husband seeks out help for you-mine never did. He drives me to appointments and listens to me when I complain but that is it.
He has never been aggressive enough in my opinion even in the beginning and also questioned whether or not this was all in my head. Many times I blame him for my current state of health because if he had done some research or actively participated when I first got ill I probably wouldn't be in the place I am in now.
I know he cares but sometimes that is not enough to get through the day. We tried counseling but the therapist didn't see things my way so we stopped going. No one except another sufferer can possibly know what you are going through.
After 11 years I have learned this the hard way. I just accept the fact that he is there if I need help but cannot say that the illnmess has drawn us closer the way others have. If anything it has pushed us apart.
Hang in there-you are not alone!
Posts: 425 | From NY, United States | Registered: Mar 2005
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tailz
Unregistered
posted
Do either of you use a cell phone? I think technology destroyed my marriage - basically causing my anxiety (which was really Lyme and babesia) and my ex-husband's brain tumor. He used to work on radar.
We are not far from you on the NH Seacoast. I will write from the side of the supoortive wife. Hubby has been very ill for 4.5 years with Lyme, Babs, and Erlich. He has suffered excrutiating, debilitating head pain from the outset. He has just returned to IV Rocephin and is herxing so badly I am scared of losing him once again.
We were married for 18 years before he got ill and is a gem, and my heart breaks every day for the man he no longer is. I know he is in there, but is disabled by the disease and it's many neurologic symptoms. He is also having psych symptoms from the pain and debilitation.
I continue to seek help for my husband, who is unable to seek it for himself. I am 100% supportive of him, even though it is exhausting and makes me sad, angry and depressed at times. I have never questioned his illness because I saw it take him down in a matter of days and we were the lucky ones who saw the tick and got treatment at the first "obvious" symptoms, weeks too late however.
We have tried counseling but he is so impaired that he has no real idea of how sick he is. Then again, he looks so good, that most people don't know how sick he really is. (There are also some who think I am "making this up".) The ones who knew him before he was sick and see him now can't believe what this has done to him. Of course, lots of people have dropped off our list and we have learned what true friends really are. For that I am eternally grateful. The rest I can't be bothered to take the time to educate or enlighten.
Remain focused on your goal of getting better so you may return to your life, even if it will be different from what it was.
This is a long reply without an answer, but I wanted to say that it is the most devestating thing that I have ever had to deal with. Your husband is probably feeling much like I do, but men are much less able to be emotinal about it. They are definately wired differently. That may not be a good thing dealing with chronic illness, but please don't let him "disappear" when you need him most.
I don't know how anyone goes through what Lymies endure and are not changed forever by it. Those that love them are also changed by it.
I never really knew what "for better or worse" meant when I married at 27, but at 50 I get it now. I wouldn't wish this on anyone.
I still thank God every day for what we have, even though we have lost much.
May 2008 be a better year for you, in whatever form that takes. Wizard
Posts: 252 | From USA | Registered: Sep 2003
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bettyg
Unregistered
posted
jo, i'm so sorry for you; others have given great personal stories to help you, and guide you.
your husband's parent dying of cancer; that's a biggie; when it rains; it pours ... murphy's law. he's lost his sister; now his dad? is dying and this whole range of emotions are coming out.
then he's dealing with your chronic lyme which goes on and on. how much can i person take?
i'd suggest counseling or at least a support group for SPOUSES of lyme patients. a cancer suppot group for what he's going thru.
when i read this initially, i also thought of Lymedad's wonderful letter to family, and DAR'S TOY STORY, so will copy them both below for you/others to use on family members. *****************************************
This "letter to normals" is circulated in fibromyalgia circles but the symptoms are often identical because chronic lyme can turn into fibromyalgia. Just substitute "lyme" in place of "fibromyalgia" http://www.fmscommunity.org/lettertonormals.htm
LYMEDAD'S LETTER TO FAMILIES OF LYME PATIENTS...OUTSTANDING! PRINT & GIVE TO FAMILY MEMBERS!!
Author Topic: Open Letter to Families of Lyme lymedad Frequent Contributor Member # 8074
posted 20-04-2007 03:52 PM
Dear Family of a Lyme Disease patient,
I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.
I am one of you.
For more than 6 years my daughter has suffered through this ugly, dark disease.
She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).
She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting time of her life.
We have taken her to every known medical specialist in southern California as well as three different General Practioners.
She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).
For the first 4 years of her struggle, I was not a good parent, even though I thought I was.
My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".
I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me").
Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.
You can't possibly be this ill and not have something tangible to show for your symptoms.
You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.
Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.
That's the way I approached her illness. It's time you took control of your illness and will yourself well.
I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.
My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.
Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.
If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.
I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.
Hey they just can't help the way this disease treats them. It's not their fault.
We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.
They need our understanding.
If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.
Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.
We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.
My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.
She certainly doesn't need someone who claims to love her causing her any more pain than she has already.
Families. from one who has been in your shoes, please let them know you love them.
Let them know you're there to help them.
Let them know that there's no way you can possibly understand their pain, but that you wil try to understand their illness.
I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.
I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.
I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.
Sincerely,
LymeDad
DAR'S TOY STORY; outstanding for family, friends, etc! This was written by a friend of mine. He asked me to post it here. We hope you like it!!! Lymetoo/TUTU posted 5-11-07 *********************************************
The last essay I did was how I feel having Lyme disease and all the other things I have wrong going on inside me. Last night I was awake at 3 a.m. and once my mind gets going, I'm all done sleeping.
So now you know how I feel, but you don't know how we feel looking back at all of you who are healthy. All of us who have immune-compromising diseases such as Lyme, Crohns, CFS, ALS, Alzheimer's, MS, non Hodgkins lymphoma, muscular dystrophy, bipolar disease or any other chronic illness.
People with chronic illness face two hurdles. One is the illness itself, and the other is the perception others have of them because they are ill. The illness becomes their identity, essentially making them faceless.
People have no clue what it's like to be us! Well, now you will. See, all of us with something broken have been taken out of the real world, or the working world and we just can't explain what it's like.
Well, imagine for a moment that all of us are toys lying on the living room floor. The toy box is next to the kids' bedroom doorway. Mom and Dad say, ``OK, kids, pick up all your toys and get them into the toy box and back into the closet. It's time for bed!''
OK......and in go all the new toys from Christmas and birthdays past. (That would be all of YOU!) Along with the newer toys goes a truck with the front tires missing, a car with the doors off, a matchbox car that has no hood, a 56 T-Bird without the top on it, and the trunk is missing.
Then there's that ole tractor that once had a bucket on the front and a back-hoe on the back, but somehow they're gone and and broken off.
Susie loved that doll, but over time her head got broken off and one arm was missing. GI Joe has seen better days, because his left arm and his right leg have come up missing.
Johnny's plastic train with 9 cars was the best thing last Christmas, but 3 cars are missing and the caboose has no wheels. Now when the toys come back out another day and get dumped on the floor, there's all the good ones that are played with right away. All the ones that have parts missing (That's all of US!).... Well, nobody plays with them because they're defective. They can't roll because the wheels are missing and parts are long since gone.
But they are still toys that the kids got and don't have the heart to throw away. So even though we get to come out and sit on the floor, nobody plays with us because we're not ``whole'' anymore.
But we still get to be with all of you and get to watch and see what's going on! And then there's lots of times we never get out of the toy box. There's days on end that we just sit on the bottom of the toy box, because we can't do the things that we once could, and nobody needs us anymore.
Then it's back in the closet and the door is shut, and it's dark once more in our lives. Not that we're not alive, we just can't fit in anymore and have to wait till everyone comes back from the real world and lets us out from the dark closet and we just sit on the floor and get to see what y'all are doing all over again.
We know we have parts missing and can't roll with the good toys. We know we'll never fit in with all the toys that have all their parts and are newer and shinier and we expect that.
Thank you for not throwing us away though, even though we can't compete with the new toys. Some of us do better than others. Those with only one wheel missing get around better than the ones with all the tires missing.
And we have gotten used to the dark closet when all of you get to go out in the world and do whatever y'all do. We just know that we can't do that anymore.
We used to be able to run with you too, but somehow got some parts missing and we're `Stay at Home Dars All Day Long', like my new Lyme song goes. We've even got used to watching all of the good toys go roaring up and down the carpet, and some of you even get to go outside and play in the sandbox too. But we have to just stay where we are because that's just what has happened to some of us, and tonight it's back in the toy box and into the dark closet.
There may be a cure for some of us, but it's hard to get the big companies to send those few little parts, like hoods, trunks, wheels, heads, arms, legs, and missing eyes. They are just too busy to take time for such little things like that.
We accept that too. And if you look at us just right, you can't even see there are parts missing and you think we should be able to come out and play.
It looks like we should be able to keep up with all the good toys, but it's so hard being stuck in this old broken frame, knowing we once were part of the big picture and had something to offer, and could go places.
But no, we're dependent on everyone else to help us out of the toy box and back in again in the dark closet. You can't imagine how lonely it gets in there, day after day, all alone, knowing that all the healthy toys get to go out and play.
What makes us feel good though is to hear stories of how we would rip up and down the hallway and across the family room and into the kitchen. Or how much sand we could dig on a good day in the sand box.
Those are called ``memories'' and all of us broken toys have lots of them, because that's all we have left! We really appreciate all the things all of the good toys do for us and hope they all understand it's not our fault. We just got stuck with weak or broken parts!
Hopefully my broken-toy story will help all of you understand what it's like being us. Up until last night, I didn't know how to put it either. But somehow I think I got it right now. It's just the way I feel, stuck at home trying to do the best I can with what little parts I have left.
I once had ``big dreams'' of being a real country music star, with my songs on the radio, and the videos on TV. You can plan your career, plot the success ladder all you want, but you can't count on your health to be there for you.
Not everyone gets to stay healthy. There are a lot bigger guys than me that were taken to their knees by a health problem and taken out of the game. I'm just glad I can do what little I still can. Like the ole saying goes, we don't have to look too far away to find someone that would gladly trade places with us.
Be glad what you do have! There's a lot of people worse off!
FULL of wonderful advice and emotional tales life with Lyme and the affect is has on so many...
Posts: 209 | From maryland | Registered: Aug 2007
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posted
WOW!, never thought I would get such good information from such wonderful people. I had previously searched the forum on this topic but actually found little.
I would have to think it is more than just me going through this problem with my spouse.
I'm not sure there is much more I can do, I try to be understanding of what is going on in his life, but my problems just compound everything else going on in his, all we do is clash.
The lyme has really done my marriage in, things just aren't the same anymore, since I am live with symptoms daily, he won't go to dinner or out with friends. Won't take trips in the car due to me having to keep the car windows open for air. (air hunger).
I think I will try and talk with him about counceling, I know he has been on a lot of meds for depression that was brought on by my illness and the death of his sister , nephew and soon father.
I rely on faith at this point and the help of the forums for support. My daughter keeps be busy also.
Bettyg, the information you provided is very helpful and I will continue to read upon it .
Thank you to all Jean
Posts: 38 | From New Hampshire | Registered: Sep 2004
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i agree, this is a good post.
my wife actually married me sick, and she is amazing.
she listens, and helps as much as she can.
sounds like your husband has good intentions if he is seeking out things to help you, most people are fortunate if their partners just stay on board.
this is a horrific disease, in every aspect.
i know your level of frustration. there have been times in the last few months where i felt as if i was getting out of the woods, only to backslide yet again, which so many lyme patients seem to suffer with.
hang in there, this is a marathon, and we will eventually win.
i think the general statistic that it takes 2-4 yrs to heal this horrible illness IF everything is done right, which, we all know is very hard to do. it seems that if could sometimes take 2 lifetimes to figure this out, i know....
hope you find some relief soon, merry christmas!
humbly
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
jean, so happy the links and info on SUPPORT STORIES are/will help you and family members!
i sent them to 1 of my 3 brothers; asked him to forward to other 2 since they have blocked any emails from me ... rarity of 6/year!! have no idea if his wife did. during our christmas sat., nothing was mentioned nor inquiring how i was.
i did tell them about my being a celebrity making 12-21-07 washington dc WALL STREET JOURNAL ONLINE about talking to chris dodd, pres. candidate, about lyme disease..
mentioned i'd talked 1 on 1 to pres. bill clinnton, also; then we got into politics!
i told them that chris dodd wrote a lyme disease bill and we've been trying to get it passed in senate/house, and signed off by lymie pres. g.w. bush.
"what does this bill do"? middle one asked. told im it was lyme research and FUNDING $$$. oh!
he was for fred thompson; 1 wouldn't make any comments .. just listened, and other one tore most of them apart without saying who he'd caucus for!
just use every opportunity you have to educate them when they least expect it! bettyg
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
This really is an excellent thread.
As others have said, the diseases are horrific, and they take a tremendous toll on families and relationships.
My SO saw my health decline gradually, and because I wasn't dx for about 12 years (of the 17 we've been together), most of our time has been shadowed by this. And it's really tested us.
It occurs to me now that when I first committed to the relationship, I only thought in terms of the "good" part of the commitment: "better, richer and health..." And the reality has fallen almost completely to the other end of those things.
When I was at my worst, we tried going to counseling together. For me, that was a really bad idea. My SO's emotions were spilling out: anger, frustration, sadness. I was too sick to change anything and it really hurt my heart to hear all that pain. Next was individual counseling, and that worked a lot better.
As my health has gradually returned, the relationship is becoming revitalized, too. And from the vantage point of hindsight, we can both see how the relationshiop has been strengthened and deepened by all the challenges.
We figure if we can stay through this, we can survive anything.
But it did take a kind of digging in for both of us. And in some ways, the uncertainty was the most awful part. We never knew what each day would hold (seizures? paralysis? excruciating pain? depression?). We never knew abut the future either. (would I walk again? work again? ever pursue my passion--writing--again?)
Some of those things have been answered...but with such a high relapse rate, we don't take any of it for granted.
What we had to do was remember we were on the same side through all this--not against each other but battling against these diseases.
And I have to say laughter was the thing that probably saved us. Even on the worst days, we'd try to find something we could laugh about. And prayer. That, too, if you're a praying person.
I honestly hated dragging another person into the heart of this illness, but if I had to do it over again, we've both said we would make the same choices.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Thank you all so much for responding to my initital post. It really is an important topic to be shared, I never thought about the vowes of "Through sickness and health" but boy I bet my SO didn't think this was going to happen.
I think the course now perhaps is to get some counseling but now I need to convince him this is the thing to do.
I know he has had sessions in the past dealing with the loss of his sister, nephew and soon father. He doesn't get much out of them so not sure it will work.
I think the big problem I have is still the questionable diagnosis that it is in fact lyme. I have had as most of you all know every test imagineable and postive IGENX testing. Anti's worked but I just keep having a few good days and then weeks of bad days.
Its been 7 years now fighting this, who knows how long I've had it or how long I will continue to have it, I just have so much more in my life I need to do with him and my daughter. Like you , we need this thing to just go away
I do pray often and for many things I pray including all those that suffer from this horrible disease.
I am thankful for the forum and those that assist with helping others. If only all the Dr's in the world would be ask king and understanding as the folks that particpate on this board.
Best wishes to you all for a healthy and happy New Year.
Kind Regards Jean
Posts: 38 | From New Hampshire | Registered: Sep 2004
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Jean, I'm sorry it's so hard. My treatment has been going great, so I certainly can't relate to hubby having to deal with seven years of this .... but one thing jumped out to me ... you are trying to hide how you feel. I think things are generally better where communication is open.
I'm not saying to complain about every ache and pain, but on the other hand, don't hide things .... I'm sure he feels that, too.
You have not reached the point of no return until you quit .... after each obstacle, you will be closer ... today is my 23rd anniversary and we are closer now that ever, but we've had months at a time where we weren't even sure we still were in love ... you work through that and you get to something better than you had before.
A good marriage counselor would be a help, too. I'm sure there needs to be some give and take from both of you.
Is there any part of your treatment that is missing? Seven years is a long time .... would Mepron work for you, it did wonders for me? What about Lariam? Artemisia? I used to have that air hunger to the point of hyperventilating, so I know what it's like!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I know you feel that you don't have a lot to offer in your marriage because you are so ill.
One thing I did for my husband was make a list of all the things he does for me and how thankful I was that he did them. He was very touched by the gesture. It's something you can do even when you are sick.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
Hi Jo, My name is john. I have been living with the love of my life for over a year now. When I met her in Nov 2005 she was ill and hadn't discovered it yet.
In aug 2007 she was declared cured by her LLMD we thought Woo Hoo we can get back to our lives. Ooops! About a month ago her symptoms have come back and we now believe she also has Babesia. We are awaiting Test results.
I'm not sure what to tell you. What I can tell you and share with you is how i cope. Its not always easy. Lately i've been feeling sorry for myself. Often it seems like a neverending nightmare.
That said I have a unique approach. I am deeply involved in the whole process. My medical knowledge is pathetic, but after running into this ******* named Lyme, i'm more of an expert than most PCP's i've met here in MD.
Knowledge is the sword i've been weilding. I also communicate with Kel all the time about it. Often I take the lead at hospitals, dr appts. and the like. This forces me to have "buy in" as to what s going on with her.
I found it interesting reading the responses from women as to how men respond to conflict and how we deal with adversity. That would be like me advising you how to deal with a woman with a rough menstral cycle.
though it might prove amusing, in the end it would be fairly useless. Men are raised to be protectors and this EVIL disease is a foe that at times seems unbeatable. "To Dream the Impossible Dream and Beat the Unbeatable Foe" (Cervantes) is my battle cry while facing this.
I doubt counseling will work unless your both open to it. Its hard for a man to accept the need for counseling as it indicates he is failing. We don't like that particular feeling.
Remember men are often lacking a real attention span. Its natural for us to feel that this is never ending and beyond our ability to handle.
That's why i focus on the short term. I can handle fighting anything when i know there is an end. Woo Hoo! We got through the Rocephin. Time to celebrate. What's next you say? Oh a month of biaxin. Time to focus on the next month.
In addition, early on I wrote a "stand up" routine about my experiences with lyme. It proved to be very therapeutic for me. I can't say what will work for you two, but I will remind you to think about why you two fell in love and made the committment to each other when you got married.
I'm not married to my Lyme patient, but i will say that i won't leave her side until she is healthy. She completes me. Besides I refuse to let a parasite beat me or determine our future.
Love, comminication, involvement and knowledge have been the keys to my sanity (and good sex when she feels up to it...lol).
Good luck, John
"Know Your Enemy" Tsun Tsu... The Art of War
Posts: 2 | From Owings Mills, MD | Registered: Dec 2007
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posted
I have only been on treatment for Lyme for 2 years, with my medical record the Dr thinks I have had it for 7 years. I am only on Biaxin and Plaq, the Dr thinks that is the fix for this disease, I often question if it is.
The Air Hunger is the worse part, I keep telling the Dr about it and he keeps telling me that the drugs I am on will take care of it over time.
I have also taking a few vacation breaks from the meds so in reality I have probraly only had 1.5 years.
I often think of switching to a diffrent Dr but my insurance covers everything so I stick it out. There are no other Dr's in my area as one just recently closed his practice.
I think it is all about communcation but also think to my info can add wood to the fire. I am careful with what I say and when I say it, most times I can't hide it but when I can I do. I have to protect my daughter to some extent.
sixgoofykids is there something better I should be talking to the Dr about with regards to treatment ? any help would be appreciated.
Healthyvictim, you sound alot like my husband good advice from the other side, thank you as I will take what you said and digest it during my quiet time.
Thanks to all , Happy New Year
Jean
Posts: 38 | From New Hampshire | Registered: Sep 2004
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Jean, I, of course, don't know what is best for you to take, but I know my LLMD has switched things around on me to be constantly hitting it from different angles. Mepron is a GREAT drug for babs and can be added to what you're already taking ... I know it can because I took that combo and it was GREAT!!!
I took Amoxicillin/Probenecid along with the Biaxin, Mepron and Plaquenil. I made great strides on this combo ... but ultimately needed Levaquin for the Bart to really get better.
I'll have been in treatment for 1 year in Jan. and I'm pretty much back to normal (had it for 35 years) except during the week I take Tindamax.
I want to point out that from a man's perspective, John mentioned that good sex helped keep him sane (okay, I paraphrased, but he said it ) I think that's something for us to remember ..... a man can tolerate a lot if he feels loved ... and it helps a bit with pain. I think that has helped my hubby get through it all, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I think you might suggest counseling, but if that was not a winner with your man, you should ask him for other ideas. For example, if you are willing to spend time and money with a counselor, why not time and money doing something actually fun, that would remind you why you got together in the first place? Maybe if counseling is not acceptable, something like that would be.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
Jean, I am sorry you and the others have to go through this. I am in this boat too.Many have offered good suggestions.{Thank you all}
Try to get a copy of Men are from Mars and Women are from Venus,I found it a big help. This type of thing happens in life with many people, not only with us Lymies and others that are sick.
Sometimes we are too hard on ourselves for being sick. Prayers for a better New Year for all of us.
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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