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Author Topic: Need some positive thoughts / prayers
088.81
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Member # 11684

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Most of you know I'm just really starting treatment and learning how to go through this whole thing (tx, supplements, detoxing, etc.).

Well, we just found out a few days ago that my grandfather has lymphoma. My mom has been up at their house (5 hours away) for a week helping them and then being with him at the hospital since he was admitted last Wed because he was so sick.

The hospital is discharging him tomorrow, but they've now said he cannot go home without what they call waking care. That means someone has to be with him from morning to night. They quoted $1200 a week, which they can't afford (and neither can we, not indefinitely). So, my grandparents are leaving their home and everything they know to move in with my mom.

My mom, in the meantime, has to stay there with him, so I found out today I have until Wed to get her house totally ready for them to move in.

I started tonight, got a few closets emptied and the cleaning supplies sorted under the kitchen sink. My stepfather is incapable of housework (apparently) and has decided the porch needs painting and things like that. My husband is sick and is taking care of our son, so I'm on my own.

I'm not sure I have the strength. My hands are like claws tonight - my husband is typing once again - and my brain is just swimming.

I firmly believe that everything happens for a reason. It helps to know that. Mentally, I can deal with all of this. I'm not even that stressed out about it.

It's the physical side I'm worried about. I'm wondering how I'll get through it - it seems so daunting with claws for hands and pain everywhere. If I take my pain pills, I can't think. I have to be able to think when ordering medical supplies and arranging doctor visits for my granddad.

So please, send a little extra positive energy my way or prayers for strength (for my whole family) if you get a chance.

One of the hardest parts of this is that my mom and I are best friends and I can't even imagine what she's going through. I can't be there for her or even make her laugh b/c we're talking quickly on the cell when she can steal a minute away at the hospital.

Any tips or suggestions would be wonderful. I already bought ten little baskets for sorting things in closets and my brothers and I are pooling money to hire maids to do the scrubbing (thank goodness!).

Thanks (even just for reading and letting me vent a little),
Sarah

Posts: 10 | From Knoxville, TN | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
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Sarah, hi!!!


And husband, hi!*)! I hope you know about Lyme and lymphoma- it is associated with different kinds of lymphoma!!! Like B cell lymphoma!!! But other kinds too- nodal lymphoma-

62 citations on pubmed and also general knowledge to us who have been around a few years- it is a specific vulnerability if you have Lynme- and it would make sense to have it run in families- Lyme and lymphoma as well- here is pubmed- just put Lyme and lymphoma in the search box and read and see if whatever kind he ahs is associated- many kind of lymphomas are!!!

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=Display&DB=pubmed

ANYONE with Lyme is more likely to get lymphoma!!! You too, me too, all of us-
and B cell lymphoma can be cured with abx therapy for Lyme!!!
19: Hofbauer GF, Kessler B, Kempf W, Nestle FO, Burg G, Dummer R. Related Articles, Links

Multilesional primary cutaneous diffuse large B-cell lymphoma responsive to antibiotic treatment.

Dermatology. 2001;203(2):168-70.
PMID: 11586019

Best wishes,
Sarah


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Multilesional primary cutaneous diffuse large B-cell lymphoma responsive to antibiotic treatment.

Dermatology. 2001;203(2):168-70.
PMID: 11586019


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30: Jelic S, Filipovic-Ljeskovic I. Related Articles, Links

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38: Ormerod LD, Puklin JE, Giles CL. Related Articles, Links

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39: Kutting B, Bonsmann G, Metze D, Luger TA, Cerroni L. Related Articles, Links


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40: Picken RN, Strle F, Ruzic-Sabljic E, Maraspin V, Lotric-Furlan S, Cimperman J, Cheng Y, Picken MM. Related Articles, Links

Molecular subtyping of Borrelia burgdorferi sensu lato isolates from five patients with solitary 19: Hofbauer GF, Kessler B, Kempf W, Nestle FO, Burg G, Dummer R. Related Articles, Links

Multilesional primary cutaneous diffuse large B-cell lymphoma responsive to antibiotic treatment.

Dermatology. 2001;203(2):168-70.
PMID: 11586019


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1: Med Hypotheses. 2006 Dec 29; [Epub ahead of print] Links
Lyme borreliosis and multiple sclerosis are associated with primary effusion lymphoma.Batinac T, Petranovic D, Zamolo G, Petranovic D, Ruzic A.
Department of Dermatovenerology, Rijeka University Hospital, Kresimirova 42, 51000 Rijeka, Croatia.

Multiple sclerosis (MS) is a chronic disease of the central nervous system characterized by chronic inflammation and demyelination. Studies suggested that the viral, especially Epstein-Barr virus infection, and bacterial infections, especially Borrelia burgodorferi infection, play a role in etiology of MS. MS prevalence parallels the distribution of the Lyme disease pathogen B. burgdorferi. Criteria used for diagnosis of MS can also be fulfilled in other conditions such as Lyme disease, a multisystem disorder resulting from infection by the tick-borne spirochete, B. burgdorferi. In the late period of Lyme disease demyelinating involvement of central nervous system can develop and MS can be erroneously diagnosed. A Lyme borreliosis can mimick central nervous system lymphoma. Also, B. burgdorferi has been implicated not only in etiology of MS, but also in etiology of lymphoma. Studies suggested that there is an increased risk of non-Hodgkin lymphoma in patients, who had a history of autoimmune diseases such as MS and that both non-Hodgkin's lymphomas and Hodgkin's disease were associated with Epstein-Barr virus infection. A small group of lymphomas called primary effusion lymphomas (PEL) is a recently individualized form of non-Hodgkin's lymphoma (WHO classification) that exhibit exclusive or dominant involvement of serous cavities, without a detectable solid tumor mass. These lymphomas have also been linked to Epstein-Barr virus and human herpes virus type 8 infections but virus negative cases have been described. Therefore, we propose that MS and neuroborreliosis are linked to central nervous system primary effusion lymphomas. As a first step in confirming or refuting our hypotheses, we suggest a thorough study of CSF in the patients suspected for the diagnosis of MS and Lyme borreliosis.

PMID: 17197115

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136

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p.s. And I will pray for you guys and him too*!!

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

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Please go easy, Sarah (L). I'm really worried you are SOOO unable to physically handle this!

Do your best and then REST!!!

We'll be keeping you and your entire family in our prayers.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780

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Hi Sarah, My thoughts and best wishes are with you and your family.

I hope your grandfather gets better soon and your family and your mom gets the support she needs.

[group hug]

Posts: 2557 | From home | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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Sarah, my heart goes out to you and your extended family.

i just posted this link elsewhere, but thought it might provide some positiveness to your situation now.

NATURE OF SUCCESS MOVIE
if you have DIALUP, it's slower than molasses so have something else you can open and work on until the music starts ok!

http://clicks.aweber.com/z/ct/?IHDcQ4wEEObLIiDnRKbkfw


Sarah,
Do you have local folks around there of your parents, etc. who have OFFERED to help whenever needed? IF YES, CONTACT THESE FOLKS NOW for their immediate help.

If not, contact church members, etc. and ask them for their help.

also, our local nursing homes are $100-$130 a DAY; so the quoted private care home care would be ONE MONTH there. Just a thought ...

As TUTU said, TAKE CARE OF YOU!

delegate as much as possible.

may God watch over and lend his helping hands during your family's time of need. [group hug] [kiss]

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TNJanet
LymeNet Contributor
Member # 10031

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Dearest Sarah,

I am here if you need me!

Lovingly,
Janet

Posts: 287 | From Tennessee | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
088.81
Member
Member # 11684

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Just a quick update for you dear friends (you may be new friends, but I cherish you already!!) -

My grandfather has worsened and the hospital is saying he may not be released for days. His kidneys shut down yesterday (they did a cystoscopy this morning and we're waiting on results) and he was vomitting blood all night last night, which they couldn't get under control.

He was getting stronger but now he's worse than ever. He cannot even talk to me on the phone, which breaks my heart.

All of our hearts are breaking to see him suffer so much. He and my grandmother have been married 66 years and she is just in shock. Both of her daughters are with her, which helps, but she is very stressed when people visit their home b/c it is very small w/ only one bathroom. Of course none of us thinks anything of that, but to her it's very difficult to handle. Even one visitor upsets her world and right now she has three. She's asked (apologizing) for us please not to come up there. I think she doesn't want us to see her cry, either. She's very private and it's hard for her to have witnesses to her processing this whole thing, no matter close she is to them.

My grandfather doesn't want anyone leaving his side - he is afraid to be alone b/c despite putting on a brave face, my mom says it's obvious he's scared that he'll die alone.

Not only did my grandmother request that no one else come, but I'm still preparing my mom's house for their arrival in case he does get strong enough to come here.

The oncologist told my mom and her sister that he's had this for a very long time. They live in a very tiny town and she said all of his tests have to be sent away for analysis and interpretation, so they haven't started treatment.

As for me, I'm hanging in here. I'm swelled like crazy but I'm taking lots of breaks in the cleaning and sitting down to clean whenever I can. I'm not doing any lifting and delegating as much as I'm able to. I took a nap yesterday in the middle of the day and went back to my mom's house later to work more.

As luck would have it, it's that time of the month and my worst lyme sx time. I'm drinking water like a fish and my detox tea and lemon water, and I'm trying to rest and take it as easy as possible.

For the first time in two weeks I barely slept last night. My best sx improvement since starting Doxy is my sleep, but last night I only slept about three hours. I'll be taking a nap this afternoon.

So that's how things are progressing. I don't know why things are happening this way, or why the timing is going as it is, but I do know someday I'll look back and see the reason for all of this, just as I have on so many things in my life.

Please continue praying for my family if you will, and for the doctors to have wisdom and guidance, too.

I'm off to do more work (sitting down to sort cabinets in the kitchen so grandma can reach everything she needs).

Thank you all so much for your well-wishes and prayers.

Love,
Sarah

Posts: 10 | From Knoxville, TN | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I don't know why things are happening this way, or why the timing is going as it is, but I do know someday I'll look back and see the reason for all of this, just as I have on so many things in my life.

Absolutely true, Sarah! Take peace and comfort in that knowledge. [group hug]

We'll continue our prayers for your family.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bettyg
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Sarah, i completely agree with you! we may NEVER know why things happen for a purpose, but we learn to go with the flow and make up for the many inconveniences, etc.

your family has my continued prayers... [group hug] [kiss]

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cbb
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Sarah, please don't overdo.
Your mother and your grandparents would not want you to do anything that would adversely affect your health.

A clean house is great, but having you take care of yourself is more important!!
Set priorities and only do what is absolutely necessary.
As time and energy permit, you can do more.

It will be more important to everyone for you to be able to help emotionally and physically when they get to your Mom's, so don't reach the point of exhaustion before they arrive.

Will keep you and your family in our prayers.
Sending lots of love, support and big hugs. [group hug]

Posts: 4638 | From South Carolina | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
hopeful123
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SENDING PRAYERS YOUR WAY....................

[group hug] [group hug] [group hug]

--------------------
some days you're the bug, some days you're the windshield  -

Posts: 1160 | From NY | Registered: Oct 2002  |  IP: Logged | Report this post to a Moderator
   

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