posted
I'm wondering if you all are comfortable with me
posting here? I don't have an outlet for good or
bad news, and unlike A.A. which I have been
affiliated with soberly for 26 years, there is no
Al-anon for Lymes disese.
My perspective and empathy may clash at times,
and I don't want to open cans of worms nor hurt
feelings.
It would be alright if folks were to say, find
another out-let, your really not one of us (Pam
tells me that all the time).And she's right. I
have hep-c, chronic/potentially fatal, and share
some of the symptoms. It has attacked me
through my liver, causing esphoghus to degenerate
and tear, causing 2 bleed outs, neuro issues,
depression, myalsia, severe fatique...etc.But its
not Chronic Lymes
So please let me know how you feel about it. I
have scanned and can't seem to find caregivers,
spouses any where here. So it would be OK, and
I'd understand.
Bobby
Posts: 24 | From Vermont | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Bobby,
Welcome to a place to learn more about LYME (and other Tick-borne infections) - and also to ask questions, voice concerns and share sorrow as well as hope.
There are many spouses here. Also: Parents, Siblings, Significant others - and friends who care about someone close to them facing this complex infection (or set of infections).
Just post in the heading what you want to discuss in your thread - and if for you or your wife. That way replies will be tailored.
It's good that you care enough to learn more about LYME - but also it's good to come for general support if you need some of that for yourself.
Be sure to take a look at the top of both the medical and general forum for the "Quick Links to Popular Topics" as you may get many questions answered there.
If you need practical suggestions, just ask. Emotional support, too. That is not my fort� but many others here are good in that area. Again, there are several "support" posters here. Not everyone is a person with lyme.
I think pets would even post, if they could, as lyme affects everyone in one's family and social circle. It's so good to see others who want to learn more to understand &/or to be able to offer whatever kind of moral support possible - gathering the tools to do that without depleting themselves. -
[ 06-01-2010, 03:58 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I can't speak for anyone else--I'm a relative newcomer around here.
Personally I am happy to see that you are so supportive of your wife, and working hard to find the best alternatives to help her, in spite of your own disability.
I am lucky to have tremendously supportive family and friends, and sometimes the emotional support is what we need most--can't go on without that.
But then there is a need for practical help, too--money and treatment and domestic chores, etc. In particular, people with neuro symptoms (which I'm also lucky not to have) also need someone to do research for them and help with decisions. It's a terribly stressful job to take on, though.
There are some around here who have little or no support from their spouses or families, or even active hostility. For me it is heartening to see how much you care and are trying to help, and I'm glad to see you posting here.
If you can't get the support of other caregivers on here, perhaps you can at least contribute your own perspective and learn more from other Lyme patients about what your wife is going through. I guess some of us are going through similar difficulties while trying to be our own caretakers.
-------------------- 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
In my own heart, you are most welcome here. I applaud you for doing all that you can to help your dear wife.
There are other caregivers here and perhaps they will come along and see your thread Posts: 515 | From In His Loving Care | Registered: Apr 2009
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I'm so sorry to hear about your own personal suffering with Hep C. My brother suffers from this as well, and it sounds like you 2 are in a similar stage with esophagal problems and liver damage.
I know it is a real hell-ish fight just to keep going on some days.
I hope you will find some comfort and good company here on LN.
Hang in there!
-------------------- When we are no longer able to change a situation---we are challenged to change ourselves. (Viktor Frankl- Holocaust survivor) Posts: 460 | From Maine | Registered: Apr 2009
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Bobby >>>>>,
And welcome from me,and I'm sure from my TxC',he has not been officially Dx'ed w/ Lyme yet[he's in Physical rehab at the moment after a knee replacement].
Glad to have you here learning and growing along w/ each of us! I have Sero-negative Neuro-Lyme [ well I think that is how it is said, CDC negative, but clinically positive, and in my brain]
...and Bartonella at the very least along w/ the various things mentioned in my Sig' line.
I hope you and your wife can find a path back to health... I'll be praying for y'all!!!
Just Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Hubby has or has had Lyme, babesia, bartonella, ehrlichia, Borna virus, EBV, HHV-6, and CMV. As his wife I have been his full time caregiver for the 9 years he has been sick and on disability.
Haven't been on LymeNet quite that long as when this all started I had never even been on the internet. It has definitely been a learning experience in many ways. I include the comment -- this is not medical advice but based on hubby's experiences -- frequently when posting.
If you have any extra time or energy I am sure you would be more than welcome to help out in the activism forum.
If you stick around for the long term you will see that as in any group there are occasional disagreements, but for the most part people here get along.
There are several other Lyme forums as well as LymeNet. Some people only post here and others post on 2 or 3 different forums. It is just like in school where people have different groups of friends and they have different viewpoints.
posted
Thank you for your responces and kind, understanding support. Some of what is going on for me is that being here in NY is "Hostile Envoiroment. Whole family is passive agressive, really believes Pams progress came as they "pushed her" into getting out of bed, going to stores, etc. the last 2 weeks.
Plus this is the place I faced my demons 26 years ago, after 17 years of addiction. Theres a ghost around every corner.
I'll drop off here, and post a med question. Thanks for your acceptance. You all have my sincerest respect, and are in my prayers. Bobby
Posts: 24 | From Vermont | Registered: May 2010
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posted
Almost forgot...Randibear, my doc believes that although I had terrible substance addiction, that due to 3 treatment failures and the issues that arose for me during my hep c treatment, that I may have contracted it 1n 1976, in a hand to hand combat, situation, on the DMZ in Korea. That I may have whats described as an "Oriental" strain that is completly resitant if not toxic to treatment.
We all went over in different boats, but were in the same boat now. Bobby
Posts: 24 | From Vermont | Registered: May 2010
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