posted
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
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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!!!
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.
3: Batinac T, Petranovic D, Zamolo G, Petranovic D, Ruzic A. Related Articles, Links
Lyme borreliosis and multiple sclerosis are associated with primary effusion lymphoma.
Med Hypotheses. 2006
4: Tothova SM, Bonin S, Trevisan G, Stanta G. Related Articles, Links
Mycosis fungoides: is it a Borrelia burgdorferi-associated disease?
Br J Cancer. 2006 Mar 27;94(6):879-83. PMID: 16495924
5: Boudova L, Kazakov DV, Sima R, Vanecek T, Torlakovic E, Lamovec J, Kutzner H, Szepe P, Plank L, Bouda J, Hes O, Mukensnabl P, Michal M.
Cutaneous lymphoid hyperplasia and other lymphoid infiltrates of the breast nipple: a retrospective clinicopathologic study of fifty-six patients.
Am J Dermatopathol. 2005 Oct;27(5):375-86. PMID: 16148405
6: Bogle MA, Riddle CC, Triana EM, Jones D, Duvic M.
Primary cutaneous B-cell lymphoma.
J Am Acad Dermatol. 2005 Sep;53(3):479-84. PMID: 16112357
7: Behbehani RS, Vacarezza N, Sergott RC, Bilyk JR, Hochberg F, Savino PJ. Related Articles, Links Isolated optic nerve lymphoma diagnosed by optic nerve biopsy. Am J Ophthalmol. 2005 Jun;139(6):1128-30. PMID: 15953457 [PubMed - indexed for MEDLINE] 8: Strunk T, Schultz C, Merz H. Related Articles, Links A young girl's swollen nipple. Pediatr Blood Cancer. 2005 Apr;44(4):425-6. No abstract available. PMID: 15602711 [PubMed - indexed for MEDLINE] 9: Munksgaard L, Obitz ER, Goodlad JR, Davidson MM, Ho-Yen DO, Hamilton-Dutoit S, Hjalgrim H. Related Articles, Links Demonstration of B. burgdorferi-DNA in two cases of nodal lymphoma. Leuk Lymphoma. 2004 Aug;45(8):1721-3. No abstract available. PMID: 15370236 [PubMed - indexed for MEDLINE] 10: Jaffe ES. Related Articles, Links Common threads of mucosa-associated lymphoid tissue lymphoma pathogenesis: from infection to translocation. J Natl Cancer Inst. 2004 Apr 21;96(8):571-3. No abstract available. PMID: 15100327 [PubMed - indexed for MEDLINE] 11: Cerroni L. Related Articles, Links Lyme borreliosis. Lancet. 2004 Jan 17;363(9404):249. No abstract available. PMID: 14738816 [PubMed - indexed for MEDLINE] 12: Walther EU, Seelos K, Bise K, Mayer M, Straube A. Related Articles, Links Lyme neuroborreliosis mimicking primary CNS lymphoma. Eur Neurol. 2004;51(1):43-5. Epub 2003 Nov 21. No abstract available. PMID: 14639029 [PubMed - indexed for MEDLINE] 13: Hulinska D, Roubalova K, Schramlova J. Related Articles, Links Interaction of Borrelia burgdorferi sensu lato with Epstein-Barr virus in lymphoblastoid cells. Folia Biol (Praha). 2003;49(1):40-8. PMID: 12630667 [PubMed - indexed for MEDLINE] 14: Munksgaard L, Hjalgrim H, Melbye M.
Infectious causes of non-Hodgkin lymphomas
Ugeskr Laeger. 2002 Dec 9;164(50):5927-32. Review. Danish. PMID: 12553112 [PubMed - indexed for MEDLINE]
15: Jelic S. Related Articles, Links
Primary B-cell cutaneous lymphoma: a model for study of lymphogenesis associated with a specific infectious agents
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16: Heran F, Lafitte F, Berroir S, Blustajn J, Parrat E. Related Articles, Links
Atypical cerebral lymphoma with ocular onset: report of a case
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
20: Behringer D, Spyridonidis A, Fetscher S, Schmitt-Graff A, Hogerle S, Kaiser R. Related Articles, Links Paraneoplastic polyneuropathy preceding the diagnosis of Hodgkin's disease and non-small cell lung cancer in a patient with concomitant Borrelia burgdorferi infection. Ann Hematol. 2001 Apr;80(4):232-5. PMID: 11401090 [PubMed - indexed for MEDLINE] 21: Hatanaka K, Miyagishima T, Kamata T, Nakagawa M, Miura Y, Arai S, Kishimoto A, Kamishima Y, Shibata M, Choi GH, Kudo M, Okabe M, Tsukamoto T, Miyamoto K. Related Articles, Links [Occurrence of angioimmunoblastic T-cell lymphoma six months after onset of Lyme disease] Rinsho Ketsueki. 2000 Dec;41(12):1273-6. Japanese. PMID: 11201153 [PubMed - indexed for MEDLINE] 22: Kieslich M, Fiedler A, Driever PH, Weis R, Schwabe D, Jacobi G. Related Articles, Links Lyme borreliosis mimicking central nervous system malignancy: the diagnostic pitfall of cerebrospinal fluid cytology. Brain Dev. 2000 Sep;22(6):403-6. PMID: 11185583 [PubMed - indexed for MEDLINE]
23: Naldi L, Minelli C. Related Articles, Links
Exploring the causes of cutaneous B-cell lymphoma: we should learn from the Lyme disease experience.
Dermatology. 2000;201(4):353-5. PMID: 11146350
24: Munksgaard L, Frisch M, Melbye M, Hjalgrim H. Related Articles, Links
Incidence patterns of lyme disease and cutaneous B-cell non-Hodgkin's lymphoma in the United States.
Histopathology. 2001 Jan;38(1):73-7. No abstract available. PMID: 11135050 [PubMed - indexed for MEDLINE]
26: Goodlad JR, Davidson MM, Hollowood K, Batstone P, Ho-Yen DO. Related Articles, Links
Borrelia burgdorferi-associated cutaneous marginal zone lymphoma: a clinicopathological study of two cases illustrating the temporal progression of B. burgdorferi-associated B-cell proliferation in the skin.
Histopathology. 2000 Dec;37(6):501-8. PMID: 11122431 [PubMed - indexed for MEDLINE] 27: Goodlad JR, Davidson MM, Hollowood K, Ling C, MacKenzie C, Christie I, Batstone PJ, Ho-Yen DO. Related Articles, Links Primary cutaneous B-cell lymphoma and Borrelia burgdorferi infection in patients from the Highlands of Scotland. Am J Surg Pathol. 2000 Sep;24(9):1279-85. PMID: 10976703 [PubMed - indexed for MEDLINE] 28: Hildebrandt G, Holler E, Woenkhaus M, Quarch G, Reichle A, Schalke B, Andreesen R. Related Articles, Links Acute deterioration of Charcot-Marie-Tooth disease IA (CMT IA) following 2 mg of vincristine chemotherapy. Ann Oncol. 2000 Jun;11(6):743-7. PMID: 10942065 [PubMed - indexed for MEDLINE] 29: Roggero E, Zucca E, Mainetti C, Bertoni F, Valsangiacomo C, Pedrinis E, Borisch B, Piffaretti JC, Cavalli F, Isaacson PG. Related Articles, Links Eradication of Borrelia burgdorferi infection in primary marginal zone B-cell lymphoma of the skin. Hum Pathol. 2000 Feb;31(2):263-8. PMID: 10685647
30: Jelic S, Filipovic-Ljeskovic I. Related Articles, Links
Positive serology for Lyme disease borrelias in primary cutaneous B-cell lymphoma: a study in 22 patients; is it a fortuitous finding?
39: Kutting B, Bonsmann G, Metze D, Luger TA, Cerroni L. Related Articles, Links
Borrelia burgdorferi-associated primary cutaneous B cell lymphoma: complete clearing of skin lesions after antibiotic pulse therapy or intralesional injection of interferon alfa-2a.
J Am Acad Dermatol. 1997 Feb;36(2 Pt 2):311-4. PMID: 9039207
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
J Invest Dermatol. 1997 Jan;108(1):92-7. PMID: 8980295 [PubMed - indexed for MEDLINE] 41: Simon MM, Gern L, Hauser P, Zhong W, Nielsen PJ, Kramer MD, Brenner C, Wallich R. Related Articles, Links Protective immunization with plasmid DNA containing the outer surface lipoprotein A gene of Borrelia burgdorferi is independent of an eukaryotic promoter. Eur J Immunol. 1996 Dec;26(12):2831-40. PMID: 8977275 [PubMed - indexed for MEDLINE] 42: [No authors listed] Related Articles, Links Fever, rash, testicular swelling, and eosinophilia in an 86-year-old man. Am J Med. 1996 Jan;100(1):110-6. No abstract available. PMID: 8579075 [PubMed - indexed for MEDLINE] 43: Gautier C, Vignolly B, Taieb A. Related Articles, Links [Benign cutaneous lymphocytoma of the breast areola and Erythema chronicum migrans: a pathognomonic association of Lyme disease] Arch Pediatr. 1995 Apr;2(4):343-6. French. PMID: 7780543 [PubMed - indexed for MEDLINE] 44: Khorenian SD, Lebwohl M. Related Articles, Links New cutaneous manifestations of systemic diseases. Am Fam Physician. 1995 Feb 15;51(3):625-30. Review. PMID: 7863958 [PubMed - indexed for MEDLINE] 45: Aberer E. Related Articles, Links [The dermatologic spectrum of Lyme borreliosis] Wien Med Wochenschr. 1995;145(7-8):165-70. Review. German. PMID: 7610665 [PubMed - indexed for MEDLINE] 46: Boggemeyer E, Stehle T, Schaible UE, Hahne M, Vestweber D, Simon MM. Related Articles, Links Borrelia burgdorferi upregulates the adhesion molecules E-selectin, P-selectin, ICAM-1 and VCAM-1 on mouse endothelioma cells in vitro. Cell Adhes Commun. 1994 Jun;2(2):145-57. PMID: 7521760 [PubMed - indexed for MEDLINE] 47: Mitterhofer AP, Bonomo L. Related Articles, Links [Still's disease in the adult] Recenti Prog Med. 1994 May;85(5):289-95. Review. Italian. PMID: 8023009 [PubMed - indexed for MEDLINE] 48: Gomez Diez S, Asensi Alvarez JM, Soler T, Fernandez Perez JC. Related Articles, Links [Skin lymphocytoma caused by Borrelia?] Med Clin (Barc). 1993 Jan 16;100(2):78. Spanish. No abstract available. PMID: 8429722 [PubMed - indexed for MEDLINE] 49: Strle F, Pleterski-Rigler D, Stanek G, Pejovnik-Pustinek A, Ruzic E, Cimperman J. Related Articles, Links Solitary borrelial lymphocytoma: report of 36 cases. Infection. 1992 Jul-Aug;20(4):201-6. PMID: 1521885 [PubMed - indexed for MEDLINE] 50: Garbe C. Related Articles, Links [Borrelia infections of the skin--progress of knowledge since the discovery of Lyme disease] Hautarzt. 1991 Jun;42(6):356-65. Review. German. PMID: 1917458 [PubMed - indexed for MEDLINE] 51: Rektor I, Kadanka Z, Bednarik J. Related Articles, Links Reflex reticular myoclonus: relationship to some brainstem pathophysiological mechanisms. Acta Neurol Scand. 1991 Apr;83(4):221-5. PMID: 2048395 [PubMed - indexed for MEDLINE] 52: Garbe C, Stein H, Dienemann D, Orfanos CE. Related Articles, Links Borrelia burgdorferi-associated cutaneous B cell lymphoma: clinical and immunohistologic characterization of four cases. J Am Acad Dermatol. 1991 Apr;24(4):584-90. PMID: 2033136 [PubMed - indexed for MEDLINE] 53: Malane MS, Grant-Kels JM, Feder HM Jr, Luger SW. Related Articles, Links Diagnosis of Lyme disease based on dermatologic manifestations. Ann Intern Med. 1991 Mar 15;114(6):490-8. Review. PMID: 1994797 [PubMed - indexed for MEDLINE] 54: Smullen MJ. Related Articles, Links Lyme disease article questioned. Wis Med J. 1991 Mar;90(3):105-6, 108. No abstract available. PMID: 2058166 [PubMed - indexed for MEDLINE] 55: Rauch RA, Jinkins JR. Related Articles, Links Infections of the central nervous system. Curr Opin Radiol. 1991 Feb;3(1):16-24. Review. PMID: 2025502 [PubMed - indexed for MEDLINE] 56: Asbrink E. Related Articles, Links Cutaneous manifestations of Lyme borreliosis. Clinical definitions and differential diagnoses. Scand J Infect Dis Suppl. 1991;77:44-50. Review. PMID: 1947811 [PubMed - indexed for MEDLINE] 57: Raub W. Related Articles, Links From the National Institutes of Health. JAMA. 1990 Nov 7;264(17):2191. No abstract available. PMID: 2214090 [PubMed - indexed for MEDLINE] 58: Brunoni A. Related Articles, Links [Benign cutaneous lymphocytoma revealing Lyme disease] Pediatrie. 1990;45(4):283. French. No abstract available. PMID: 2163518 [PubMed - indexed for MEDLINE] 59: Kraft R, Altermatt HJ, Nguyen-Tran Q. Related Articles, Links [Differential diagnosis of atypical plasma cells in the cerebrospinal fluid] Dtsch Med Wochenschr. 1989 Nov 10;114(45):1729-33. German. PMID: 2806105 [PubMed - indexed for MEDLINE] 60: Szyfelbein WM, Ross JS. Related Articles, Links Lyme disease meningopolyneuritis simulating malignant lymphoma. Mod Pathol. 1988 Nov;1(6):464-8. PMID: 3222255 [PubMed - indexed for MEDLINE] 61: Asbrink E, Hovmark A. Related Articles, Links Early and late cutaneous manifestations in Ixodes-borne borreliosis (erythema migrans borreliosis, Lyme borreliosis). Ann N Y Acad Sci. 1988;539:4-15. Review. No abstract available. PMID: 3056204 [PubMed - indexed for MEDLINE] 62: Weber K, Schierz G, Wilske B, Preac-Mursic V. Related Articles, Links European erythema migrans disease and related disorders. Yale J Biol Med. 1984 Jul-Aug;57(4):463-71. PMID: 6549090 [PubMed - indexed for MEDLINE]
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
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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
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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.
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posted
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
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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.
We'll continue our prayers for your family.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
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...
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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. Posts: 4638 | From South Carolina | Registered: Mar 2001
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
SENDING PRAYERS YOUR WAY....................
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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