posted
I have read the thread on "how helpful is your spouse"... and I completely symphathize with you, it must be horrible to feel like you don't have any support but.. I can't help but want to vent about those of us who are consumed by the opposite.. doing everything in our power to completely and selflessly support our spouses.
My husband has been sick for over 4 years, we have been to 28 doctors, finally diagnosed with Lyme in 12/08, 4 hospital stays for Pancreatitis following our first IV ABX, complication after complication, to 4 LLMD's, one says yes, it's Lyme, another says no it's absolutely not Lyme, it's a serious auto-immune disorder, so off to Mayo Clinic to find out what it is if not Lyme - they have no clue - back to another LLMD because this HAS to by lyme!! started us on 50 pills a day, RX and Supplements, back in the hospital again. Gall bladder out this time.
I have made every appointment, followed up with every doctor, picked up every RX, shopped for every supplement, read every book and sometimes just sit and stare at the GOOGLE screen wondering what to type in to research now.
Now we've stopped taking everything until he heals. Then... who knows? We don't know which way to turn now - between a rock and a hard place - take ABX - get pancreatitis and no one knows why. No Mayo Clinic, not Columbia in NYC, not Dr. H in NY (he is who we are currently seeing - but never even made it to our 2nd appt. - 2 weeks after starting his regimen whammo pancreatitis).
That's just a brief overview of our situation, but the point of this message is that I, ME, MYSELF, I have been doing every bit of research, made every decision on which doc to see, of course I talk to him about it but he just can't make a decision and trusts me to just bring us along our journey of a rollercoaster ride that won't stop and we can't get off of it!
I have a sick feeling in my stomach EVERY day, I spent at least 2 hrs. a day at work trying to find answers.
Now I am on a parasite kick - found some info that can cause pancreatitis.
Going to a Burruscano seminar tonight near where I live.
I even ready all the posts here and respond to people to try to help them also from my experience. It's like you don't want anyone to go through what you went through if you have an answer to give them.
My life has been turned upside down, it is also affecting my young children as well. We try our best to be normal but we ARE NOT. He is sick. Period. My mission has been to get him better so that we can resume our family life again.
I know I need to take care of myself but how can I feel OK, I am healthy, that's taking care enough.
When he is up to it, we go out even though I don't want to. Everything revolves around my husband and that is OK with me.
I am just scared to death that there may be no way to cure him.. then what? Those thoughts creep up and I banish them right away. I will not give up.
I have a huge tabbed binder, with a timeline, index with all of our records.
We just carry it around from doctor to doctor. I sometimes feel like we are in the twighlight zone.
OK - so are there spouses out there that are like me and want to vent, scream, cry, get their lives and families back in order and will stop at nothing to do so?
This is a terrible disease and for those of you that are reading this and are the one on the other side, I am literally crying for you RIGHT NOW, here at my desk at work.
My co-workers are used to it, they see me cry all the time.
[ 06-02-2010, 10:47 AM: Message edited by: sandyk ]
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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posted
I'm a mother, not a spouse, of a Lyme patient, but I am also consumed by the need to get her better.
Sure, people think I should get on with a normal life, but how is that possible when my daughter is suffering the way she is?
Posts: 984 | From US | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Exactly. If she (or even a friend) were standing in front of you with a compound fracture of the leg and there were no phones, no doctors, you'd work hard until the situation had been resolved.
With lyme, it's triage -ongoing - because the medical community has dropped the ball. Those lucky enough to have a LLMD still need to learn so much about this as that's the only way to understand the unique aspects of care and to achieve progress. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
I am in the same boat as jkmom. A Mom trying to get her daughter well.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I was the one sick with lyme. My husband was the one that lived in fear that I would die and he would be left a widow.
Of course, he never expressed this fear to me or anyone. He had to carry it alone. He figured that by the time anybody figured out what was wrong with me, it would be too late. They would find out I was full of cancer and nothing could be done to save me.
These were his thoughts as he looked at me laying there day after day.
Now, it has been 5 years since I completed my lyme treatment and I am perfectly healthy, symptom-free, enjoying my life. I have the same life I had before lyme disease.
So, now he can tell me what he went through.
I will lift you up in prayer. You are a hero.
I am glad you are with Dr. H. He is the best.
One day I expect this nightmare will be over, and you will be helping other spouses with your wealth of knowledge obtained through this ordeal.
I went through so much getting a diagnosis (10 years undiagnosed lyme disease) and after the diagnosis with the "ducks" as they call them. It took a while before I got to a lyme doc and then even longer to find one who knew how to cure me. I stick around LymeNet to help others who are being put through the same mess.
I'm glad you are keeping notes. When others post and you have experienced it, you will be able to help them tremendously.
I will lift up your husband in prayer today. Praying wisdom for you. Perhaps Dr. H's office will be your best source of info. If anyone has seen a case like yours, I would imagine it would be them. I hear they test for parasites right off the bat also.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Bless those who support the sick and try so hard to find answers.
I am very much in the same boat that you are in, only I am the husband and the sick is wife. I know everything you said, and often wonder out of my mind if everything is real. Not to mention I have a full time job that's pretty demanding, and a 4 year old that I need to send to and pick up from school.
Day in and day out, I am a researcher for a disease, a housemaid for getting by minimumly, a driver to and from doctors' offices, a financier who pays bills, a friend who tries my best to understand the pain and suffering of someone who I used to know so well, and a player of "hide-and-seek" game because she would "hide" things around the house.
So, I will cry with you...
Posts: 822 | From midwest | Registered: Apr 2009
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posted
Sandy, After about 4 years of expierancining what you are, we hit a road block, hopeless, and no direction. Then after a two year break, we went back to Dr.H, (NY)5 and a half hours one way, started cowden, then after 3 months added bicillin.
26 years ago, i admitted and excepted that I was completly powerless over drugs and alcohol. However in my own tx for hep c, I used these liitle pre-loaded needles to inject my self in tummy fat.
I was also a substance abuse counselor for 15 years, educating felons, in prison, about what could trigger them. Like, even if you have a script for painkillers, you can't use them, look the other way when you get blood draws, or novacaine. Etc
So here I am, argueing with the Insurance company over "tier" change, cause it was too complicated, Pam couldn't get past the 15 selection menu. Then I had to persuade her doc to change the orders and miligrams, then pick up prescrption of Oxy's, of them for the month, go home and then go through the procedures, of injecting the bicillian....Well i wasn't Powerless any more, I was almost a real live nurse, only I started getting these thoughts in my head...xxx oxys is worth xxxx bucks on the street, Maybe I could get a weekend away, and shoot the drugs, screw it, I desrve it right?
My personality changed from stress management, to anxiety, looking for someone to just look at me the wrong way. POW
I re-entered therapy as some of what was going on seemed like PTSD
Then one day the therapist said, "What would Pam, my wife do if you were gone? I was speechless. In the next couple of days I re-alized, if I continued to lose who I was, I would not be there to help her. I told the docs, I will not do the bicilin any more, nor would I pick up the meds. Guess what, they found a way to get it done by mail, and stopped the farting around with the cowden and bicillin. I got out and started playing and performing guitar 2x a week...And people were actually clapping for me, and I began to make new friends. It became chrystal clear that no matter what, I had to start finding a doc that would give her rosherine, my search became extremly focused and lo and behold we found Dr. "C" in NY who does it and Pam is responding, and I'm looking for gigs and attending AA more consistantly. But taking care of me must come first.
I can only help Pam, if my head is clear. The anxiety went away, the courteous Bob is back and if you google "bob0541" you'll get my site, a free sorta calling card. When I used to work in the prison, I used oil painting to add brightness to the bleek...It may sound selfish, but its working for me. We also made schedules. 1 hour of Lymes related calls a day. No phone menu's. Speak to a person, If you get that "you speak english" option, press the one that speeaks spanish. Your gonna get some one who can speak english and not another wait, or voice mail. We should be paid to triage when dealing with this as every body dumps it on the "well one".
Check out my site, hang up the phone and get a free concert and laugh. Then find your outlet and go for it. If you lose yourself, so does the person your trying to help. Bobby
** edited to remove doctor location and protocol specifics **
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My spouse never researched anything about TBIs. What can you do? I have gotten help in the way of drives to doc appointments, but no nitty gritty research. Thank gosh my mind is still here or I'd be dead. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My husband can no longer be bothered with research, yells at me when I am really sick and tells me over and over how horrible his life is. This is not the man I married.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
seekhelp, my husband is the same. he does pretty much everything i ask him to do for me, but he doesn't research anything. i think he just feels helpless.
cordor, i am really sorry to hear that that must be so hard for you!
Posts: 220 | From Kansas | Registered: Mar 2010
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posted
YES, YES... us spouses do feel helpless... then that can lead to our personalities changing all together. I am the one that's usually in control of everything.
I make the plans, everyone just follows along.. dinners, concerts, parties, everything - I have everything under control.
And now? I am completely out of control. I keep looking for answers when there aren't any. So how do the other spouses start to research when they just don't even know where to begin?
I have said it before sometimes I just sit and stare at the google screen and try to think of what I'm going to type in next. It's obsessive really.. not good.
Then I find a case study on 2 people from the Netherlands that got pancreatitis from probiotics or the 8 people from who knows where that got it from parasites. Then I'm like "WOW" I FOUND IT!!! Yeah right.. search and search and nothing else comes up. Dead end.
For us spouses, it is frustrating, that's the key word. Then I get mad, angry sometimes I yell at him for whatever reason so maybe if he's mad at me I can just stay in my room and sulk and feel sorry for myself. I feel helpless, completely powerless, my whole outlook and personality has changed.
Seriously, a psyhcologist would have a field day with this!! It is all so very typical. Everyone deals with stress and situations like this in their own way.. and unfortunately alot of people just choose to "check out" mentally as opposed to feeling like I do everyday. It is a choice. Then the sick spouse feels they don't care, etc. when they really do. We were just never faced with a situation like this. The party is over.
One time I was yelling for some reason at my husband and said I am sick of all of this, why do you feel this way, what is happening, etc. etc.
He just said "one day you will realize just how sick I am" - I'm like.. oh no don't you say that to me - I am doing everything for you - I can get frustrated too!
Actually I can turn this around and say that he does not show me the appreciation I deserve. There's hardly any more show of affection, attention, never mind sex - that's out the door! So what about how that is affecting me?? I think he is being completely insensitive to that, but it's the disease, I guess, he's too tired and sick to even think of it..
OOOHHHH that feels better.. thanks for listening - I'll go back to work now...
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Sandyk, thanks for saying what you did. It puts things in a different perspective. Sometimes one needs to hear it. We are in the exact same boat, only reversed.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I have always believed knowledge is power. For some reason, not with this disease!
I refuse to give up. I will continue to advocate for hubby with the medical field, legal reps, and any one else who wants to get in my way.
It is the least I can do. I know he is sick, I see it every day. And I am SAD beyond belief for the life he is living. I am sad for me too, but I don't often allow myself to go there.
It feels good to do something, even if it isn't THE answer.
posted
Unfortunately, there is NO ANSWER... that is the bottom line.. what do we do? I just have a hard time accepting that this is the worst epidemic we have ever seen.. what me? I'm involved? no way.. but yes, it is true.
OK - I have tears again now.. going back to work...
god bless us all!
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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Sounds like you and I are living parallel lives right down to the pancreatitis, gallbladder removal, I.V. therapy, lack of intimacy, endless obsessive researching at and away from work, and on and on.
My wife and I have been in this battle for a little over 7 years now with no end in sight.
So far there is no "getting our life back to normal."
The antibiotics keep my wife's Borrelia, Bartonella, and Babesia symptoms somewhat at bay but never cured or in remission.
We have spent roughly $100,000 dollars of our own money fighting these diseases above and beyond what our major medical insurance has shelled out.
I see a dark future for my wife because my research tells me that a human body cannot tolerate the abuse that these pathogens can dish out over the long term. She is only 42 years old now but so very sick and so precariously hanging onto life.
I surf many Lyme websites looking for a cure and for justice, but all I see are very few token claims of "being cured or in remission", and no justice whatsoever.
I see the medical community far more interested in fast buck medicine than actually curing any disease.
I wish the diseases upon the IDSA doctors because it is the only way they will recognize the severity of the diseases and take appropriate action.
As it stands now no amount of research or evidence will ever convince Nazi doctors Wormser, Shapiro, and Zemel to change their positions and allow progress to move forward.
Hope and work for the best outcome but I fear the worse has yet to arrive.
I feel for you.
Godspeed.
Posts: 45 | From upstate NY | Registered: Sep 2007
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I, too was obsessed with reading and learning everything printed, posted, abstracts (the medical terminology would take hours to decipher),anecdotal evidences, etc...staying up all hours to cram in more knowledge day after day and night after night and year after year.
We are put into this position because doctors don't know what the heck they are talking about and SOMEONE has to figure it out.
Ten years ago lyme info was relatively scarce...one had to dig deep.
Now, tho doctors still remain in the dark ages concerning lyme, there is a heck of alot more info.
It is an impossible task we have been given to do as care-takers.
Not only do we have to watch a loved one being destroyed by spirochetes and who knows what else, we also have the incredible task of navigating the medical arena that is not too keen on any interjections from non-medical people...especially MOMS.
What to do?
I forced myself to step back and take a breath. I forced myself to NOT go on the computer and research...just started with one day at a time...I told myself no, not today, tomorrow I can resume.
One day, eventually turned into two and then three and I allowed myself these breaks. It was hard because my daughter struggled so and all I wanted was her to be better.
It was the exact right thing to do. It turned out that I had time to really think about what I had read, and ponder it...give it some thought and it gave me clarity to make better decisions.
It gave my mind a rest from the grueling task of trying to know it all, which, is impossible by the way.
It was so hard to do at first...like I was having withdrawl symptoms.
LYMECAREGIVERNY I too thought my daughter might die, she seemed so close so many times, but she didn't.
She had her gall bladder out this past year and suffered pancreaitis, she is only 23. He GP thought it was all in her head... she was in so much pain. The surgeon came close to an apology when he saw what rough shape her gall bladder was in when he removed it.
We did the IV routine, lived WV for a year so we could travel to NJ for treatment (we live in WI).
We have been down your road and hit every pot hole that you have on the way.
And we have spent every cent we have and then some to get her better.
Don't loose heart. I can tell you that the whole thing about killed the both of us, but we are still here fighting the good fight.
It is hard to think on, but don't give up...it seems hopeless, but it is not.
You are a good husband and a wonderful protector of your wife, that is admirable.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
yes it is hard being the care giver...and i also have done so much reading...and asked so many questions...it been almost 9 yrs now...but the day we got the news he had Lyme was almost 4 yrs ago...when you know what your fighting it helps so much...
thanks to this sight...i can vent, get help... and know i am doing the best i can...
so thanks to everyone who helped me.... Madge
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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posted
Applause and hugs to all you dedicated caregivers.
I have to be my own, but I have seen relatives suffer through being caregivers for cancer and Alzheimer's. It's a really heavy burden to take on--maybe because the sick person needs help 24 hours a day, and the caregivers usually feel that they have no choice but to ignore their own needs to help them.
Meanwhile the caregiver really, really wants to help, and yet if the person has an incurable or very difficult disease, there may be nothing that can succeed at curing the person.
I guess we are lucky that there are treatments for Lyme that often work to improve it, but then I suppose a caregiver would be constantly suffering disappointment when they haven't worked yet. I know I have felt that frustration myself, as a patient.
I have tremendous admiration for anyone who takes on the job of caregiver for a chronically ill person. I think you should all remember, while you're doing everything you possibly can to help your loved one, that you need to stop and take care of yourself too, or you will get sick or burned out while they still need you.
I know that I would rather go through a lot of suffering myself than watch a loved one do it and feel helpless.
Given the number of Lyme patients with minimal to no support from family, or even open hostility, the committed caregivers are gems and should be treasured and supported.
Thanks for everything you do, to help your own loved ones and to inspire others.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I am praying for you all... you are all truly heros. That is what real love is really all about and as we know...
Love never fails... God bless you all...
Posts: 243 | From Charleston, SC | Registered: Oct 2008
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I'm the one who does all the (constant) research. Even though all of us (me, husband three kids) have LD... our LLMD quizzed the hubby at our last visit and asked him if he knew if Lyme was a virus, bacteria or fungus. Hubby said virus. (Oy vey!)
I'm glad one of us tries to keep on top of things, bless his heart!
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
We have a group on Lyme Friends called "Lyme Lovers" for partners of lyme patients.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I did everything for my wife. All the research, all the Dr. appointments, everything. It was enough for her to live with the disease, I looked at it as my job/duty/responsibility to get her better and I was happy she trusted me to take that role. I was consumed with lyme (still am) until she got better. Thankfully we've been successful so far, she's symptom free today, and I'm proud of the work I did to help get her there.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I was the one who diagnosed, treated and researched the hell out of this disease for my wife. Many other people here and elsewhere were kind enough to help me out, when I knew nothing.
She is symptom free today, but who knows if the bacteria is all gone.
I ended up going the frequency treatment route, because it was easier for me to comprehend, and it worked better than some other methods we had tried.
After much refinement, road blocks, and luck, we finally got to the symptom free stage. It was difficult, and time consuming, but relatively cheap from what I have heard here.
I am glad I went this route, but I should not have had to do this in the first place. That is what doctors are supposed to do, not a rookie.
It also shows that tenacity can eventually get you to where you want to go. A person with average intelligence, without medical experience can learn how to do this. I have proven that much.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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What can you do? I have gotten help in the way of drives to doc appointments, but no nitty gritty research. Thank gosh my mind is still here or I'd be dead. 
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