posted
Aw, I'm so sorry to hear that! I lost my father in a car accident several years ago...it's hard!
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lymeladyinNY
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posted
Dear dilly, I'm very sorry to hear about your dad.
I lost my mom after an extended battle with heart disease. It is devastating.
I will always miss her.
Sending prayers your way - lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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bettyg
Unregistered
posted
dilly,
my heart goes out to you/your family during your most recent crisis, and the thoughts of losing a parent! been there, done that; buried them both plus my only sister, 41, and sister-in-law, 40 to early onset alzheimer's.
i'm going to paste my sympathy poem collection here for you to read, and a few other things in there as well. they will provide you comfort and when the time eventually comes for all of us, perhaps you can use 1 or more in his funeral program/bulletin.
meanwhile, you'll be cherishing every minute you have with him/others!
posted
I'm so sorry!! It's really hard to go through that. Use it as a life-learning experience...an experience that can bring more fullness to your life and to those in your family.
Both of my parents are now gone. Mom's birthday was Sunday. Parents are really special and losing one cannot compare to the loss of anything else.
HUGS
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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merrygirl
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posted
I am so sorry. God bless him and your family, I will pray for you all. Melissa
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Geneal
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Member # 10375
posted
Prayers for your fatherm you and all of your family.
I am so sorry to hear this devestating news.
Would you mention your Dad's name or initials so I can be very specific in my prayers?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
thank you all for the good wishes.
i'm heading out thursday to wv to be with my dad (Robert Franklin W.) for however long. he's thinking about choosing to forgo radiation and chemo and just live as long as he lives.
12 years ago, my husband made the same choice months into chemo for adult leukemia. the drs told him he would die if he stopped chemo. he said no i won't and even if i did, i'm not doing anymore. made him sicker and more toxic than the leukemia.
he is still alive. since Lyme, and all the more so now, i hold onto the number one lesson he learned by defying all odds and living:
TRUST YOURSELF AND YOU OWN BODY FIRST AND LAST. even the best DR in the world does not know you and your body the way you do, and never will. a good doctor LISTENS.
My father is very wealthy, lives in places with access to the best health care in the world and has the best insurance it is possible to have in the USA, has a PhD and a 40 year long career as a biologist, knows his body extremely well, is not shy, and knew something was wrong 2 years ago.
He asked and then demanded a CAT scan and notrone single da--md doctor would listen until he went to his old fashioned mountian country doc in wv who ordered one on the spot.
if people like my father with every advantage have no chance of the right thing being done, NONE of us do without questioning everything, asking about everything, and DEMANDING with the threat of lawsuits if necessary that we are provided adequate health care.
enough is enough.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I'm so sorry Dilly, you and your family are in my thoughts and prayers.
I had a scare 1 1/2 years ago, my hubby passed out at the bottom of our stairs. He had a heart attack at 52. We were fortunate that the EMS got here in record time and he had a stent inserted that night. I thank god he is fine now.
Take care and take one day at a time my friend Cassie
-------------------- Posts: 564 | From Toronto Ontario Canada | Registered: Jan 2002
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posted
Dear Dilly, I am so sorry to hear about your father's illness and will keep him and you in my prayers, I lost my Dad many years ago and the father/daughter bond is so special and timeless.
Ellen
Posts: 217 | From New Jersey | Registered: Apr 2007
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lymednva
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posted
Dilly,
I am so sorry to hear about your dad. Just a year ago I was watching my mother slip into death. It was difficult, but having her at home with me was a true blessing.
I don't think I'll ever forget how professionally and caringly her doctor broke the news to us that we needed to call in hospice, things were not going to improve. She left us alone and we both sat and cried together.
I was lucky, my mom was 95 when she died and only the last year and a half were really difficult for her. She had her sharp mind almost all the way to the end, and that was such a blessing.
Treasure these times with your dad and you will eventually come to accept what is happening. That doesn't mean you will have to like it, but it does make it easier.
I lost my dad when I was ten. I'll never forget that either. It was sudden. He died of a heart attack while driving across OK, where we lived.
At the time my mom was bringing me home from summer camp. I still remember her calling my brother and me into the living room to tell us the news.
I'll keep you in my prayers.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
Lymednva, i was deeply touched at your losing your dad of a heart attack when you were 10!
my niece was 11 and nephew 14 when their mom/my sister died at 41 of breast cancer afte 6.5 yrs. cancer free.
my sister-in-law was 40 when she died from early-onset alzheimer's disease; nephew was 13, and niece was 16; nephew never knew his mom healthy at all! i wander now if she had lyme too. mayo clinic took 4.5 months doing a complete autopy; was AD!
dilly, at least your dad can afford the health care and has the means to get him anywhere in the world! best wishes on making the most of the time you 2 have together.
have you got him on videos galore? if not, make that a priority of getting you 2 in them together, reminiscing, etc!
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MagicAcorn
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posted
Hi Dilly,
Sorry haven't been on here since Monday and just came upon this. It is so sad when we lose our parents.
I lost my father at nine and until this day feel horrible I was not afforded an opportunity to say goodbye due to hospital rules in place in those days.
I did take care of my mother until she died. It was dificult and tragic as she was extrememly ill. However, one month before she died she had a lucid moment and I had an hour where we could share some hearfelt sentiments that were very healing and allowed a lot of emotions to be released. That truly mystified me and the nurses but was a divine gift that I'll always treasure.
Sometimes it is still difficult as I have no siblings but I have two boys who lift me up and give me hope for better tomorrows.
Try as best you can to celebrate the memories and relive some of the old times. Maybe if possible depending on his condition have a party while still possible with as many people who were important to him as can be assembled. Relatives, colleagues, nieghbors, friends, etc., and try to make it festive instead of sad.
Like me you are receiving a gift of time to close some loose ends and a chance to say goodbye with all the pieces together.
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savebabe
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posted
I am so sorry about your father. I will keep him in my prayers.
Posts: 1603 | From ny | Registered: Aug 2006
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sometimesdilly
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Member # 9982
posted
I am incredibly touched-- not just by the support from all of you, but from hearing from so many of you that you have already lost a parent or even both. thank you all so much.
and Acorn, you are so right that i'm fortunate to have handfuls of time to say what needs to be said and goodbye. sudden unexpected death of someone you love, parent or not, is the worst of all.
actually, i'm even luckier than that, and so is he. until 1 year ago- that's one of almost the nearly 50 of my life- - my father was only a father on paper. he was out of my daily life when i was 7, never there when he was there, and never looked back after he left.
Two years ago, for whatever combination of reasons- and hey, perhaps even because a tumor pushed at an emotional center in his brain- he began genuinely loving for the first time in his life. a door opened.
one year ago, when he learned i had Lyme he opened that door to me, and became a real father to me for the first time. i think it felt really good to him. it took me awhile to trust that what cmae from him was real.
so, i am very grateful that he lived long enough to feel love for his family,and to allow others, including me, a chance to love him and to heal that wound while he is still alive.
but/and yes, it is also especially sad to have a father after all these years, only to lose him after such a short time.
thank you again.
love, julie (dilly)
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AZURE WISH
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posted
I am so sorry dilly. Both you and your father will be in my thoughts and prayers.
5dana8
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Member # 7935
posted
I am so sorry dilly to hear about your father
and will keep him, his wife & you in my thoughts & prayers
Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
dilly, wow; totally out of your life until 1 yr. ago, and then bingo; he was there when you needed him most!
life's many puzzles that we will never find out why things happened this way, etc.
i know when i get to heaven; yes, i believe there is a God, son Jesus, and a heavenly kingdom, where i would like to ask God WHY on several things. but i know as well as i'm typing here, it will remain a mystery for the rest of my early/heavenly life.
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CaliforniaLyme
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posted
I am glad you have the time left with him that you have!!! My father died suddenly one day when I was 17 and there were so many things left unsaid!!! Say everything you need to- now-!! Let him know how much you love hiM!*)(!!!!!!!!!!!!!!!!!! Best wishes, Sarah
-------------------- 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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sometimesdilly
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Member # 9982
posted
so much for Hallmark moments and closure
i just came away from 4 emotionally and physically draining days with my father.
i sure hope the fog doesn't clear one day and i say, oh man, i missed the moment so completely,and it is my fault.
his brain is screwed up from a cancerous tumor. mine, from Lyme. we couldn't communicate at all. there was no trust or warmth or anything sustaining at all. hostility on his end. bewilderment on mine.
i learned, i think, that people can change after a lifetime but maybe only somewhat, and maybe not so much when the pressure on is abotu life or death.
of all the times when i have wished for the clarity of a non-Lymed brain, this is it.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
dilly, i'm saddened those 4 days were NOT days of lasting memories together; father//daughter!!
yes, you each have major illnesses getting in the way. BUT your PRESENCE will hopefully help him to know how MUCH YOU CARE DILLY!
best wishes for the future on attempting to have any QUALITY TIME left!
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posted
I'm sorry you had a less than perfect 4 days. His anger is understandable at this point. The best thing is that you KNOW you did everything you could to be there for him.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Vermont_Lymie
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Member # 9780
posted
Hi dilly, Somehow I missed this thread for the last two weeks.
I am so very sorry for your dad's condition. Sorry that these last few days with him have been so difficult. He is very sick right now and not his real self. Our memories with our loved ones always come at unexpected times. Sounds like you have had better times with him in the past few years, before he became so ill, and those loving memories are going to stay with you always. I totally understand much of what you are going through, and hope you have some peaceful moments coming ahead. My thoughts and sympathy are with you and your family. love, ella.
posted
Dilly, I'm so sorry for your dad's illness and for the 4-day disaster. I truly am. I lost my dad in November-he was 64 and I am 41. I was not ready to have him go Home. His mom, my best-friend, died the February before and he was diagnosed with inoperable cancer the next week. He died eight months later and it was the shortest and longest eight months that ever occurred! I miss him terribly but find that so many things are in perspective now. I am a Christian, as he was, and know that he is in heaven with our Lord and all the family members who've gone on before him. I know we'll be together again. But that doesn't always help with the grieving that must be done here and now........ I expect that you may find your grief will be a bigger and broader one than for some---because of the years of loss you suffered by his choices. I'm so concerned for you, because the death of a parent is very different from any other we experience. Your grief will likely be for millions of little "deaths" along the way, before he passed. Please be very good to yourself. And I thought it was silly to go to grief counseling--"They can't bring him back, how will this help?" but I was wrong (again ). It helped after a few months when people started acting like I should "get over it" and all that. I had alot of feelings come up that were sort of not connected to Daddy especially but just left over grief from childhood. I'm praying for you,friend, and encourage you to reach out if the pain becomes unproductive or "too hard". We're all here for you, too.
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sometimesdilly
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posted
thank you all again.
bobbysgirl- i am so sorry to hear about the very recent loss of both your parents. Age 41 is so very young to have both gone. I'm glad you have your faith to comfort you.
whether because of stress or whatever else, i am not doing well at all. i actually hung up the phone on my mother last week, and have not spoken to her since. though she and I have been adult friends for years, there is something about my father dying that is bringing up the oldest possible family crap that i thought i had worked through and resolved decades ago.
i can't think straight about who my father is. the brief time that seemed like he was being a father was all from a distance- mostly through emails, some phone calls. it was not in person.
in person, when i was there, as i said, there was very little connection and lots of anger, none of it expressed directly. one of his comments, though, was to tell me that none of his children had loved him unconditionally. ?!!!!! this from a father who had actively chosen not to be in our lives at all until we were middle-aged.
i mean, wouldn;t that be difficult to process no matter what?
still bewildered, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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lymednva
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posted
Dilly,
You certainly have a good reason to be bewildered. That was a very hurtful comment, and whether or not it was caused by his tumor, it doesn't take away the sting.
Try to hold onto the good moments you had with him, even if only through distant communication. Perhaps that was all he was able to do, but it was better than nothing.
I watch my DIL struggle to have a relationship with her father, who left as soon as her mom became pregnant with her. I only recently learned that her mom hung onto "loving" him for about 15 years after that. No wonder my DIL is confused.
I wanted to hit him over the head when he came up to her at their wedding and said, "I know I haven't done a good job of being a father for the first 25 years of your life, but I promise I will do better the next 25."
I thought, "Yeah, right," to myself, and I was correct. It's been four years and nothing's changed.
You can't change what your father says and does, but you can change how you react to it, and how you deal with it.
I do hope you will consider grief counseling. I waited 35 years to grieve for my father's death. It's much harder when you wait.
My mom's death wasn't easy for me, but we had said all that needed to be said and worked through all the difficult things in our relationship by the time she finally passed. That was a true blessing for me, and I realize it doesn't happen for all.
Just do your best to take good care of yourself now.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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sometimesdilly
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Member # 9982
posted
Lymenva et al:
here's the thing. if you had asked me 5 years ago, do you see yourself crying at your father's funeral,the answer would have been, no.
i know its hard for most folks to understand,but my dad was so cut off emotionally himself from his own family that it seemed natural to him to cut off his own children to pursue his career.
in his world, that's what parents did. also in his world, parents never spoke directly about emotions at all, and when they did, emotions did not often line up with reality.
all of this twisted past makes it near imposible to figure out what is going on now.
i pride myslef on being emotionally honest and intelligent, but i can;t figure out what is up or down right now, much less what makes sense.
i'm feeling more lymed mentally than i ever have, which doens't help, or is the problem, one or the other.
grief counseling? or what other life line? i am sinking.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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5dana8
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posted
Hi Dilly
It sounds like grief counseling might be a good idea. To talk it out is good, but untill you can get there here's a life line from me ~
please don't sink...in time your heart will mend
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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treepatrol
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Stopping Cancer Good News tetracycline minocycline and doxycycline Borrelia burgdorf
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
dilly, so sorry to read of the hell you are going thru from the detachment of your Dad all these years to just getting to know him this past year, and now his cancer!
what i read from you reminds me of losing my sister-in-law at age 40 to early onset Alzheimer's disease. She was LIKE another sister to me, and no one prepared me for the fact that I'd be grieving for her in these ways:
o as the person she once was before her illness; o as the close sister she had become to me, o and as the alzheimer's patient she had become.
it was 3 situations of grieving; not one.
carol B/others, gave you excellent advise; hope you follow it to ease your hurt/pain in your heart/soul.
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sometimesdilly
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posted
i'm sorry to not be responding more and directly to the very welcome support i keep finding here.
due to a complete collapse in judgment by many persons months ago, i have been taking care of 2 step grandchildren, 5 and 7, here for a month from California, in addition to my almost 5 year old son.
the last weeks have been way beyond surrealistic.
my father was given a second opinion which consisted of do not give up entirely yet, and then had another biopsy done last Friday, to determine more precisely how much more time he may have. he should know today. am waiting to hear.
i know i need help- from everywhere i can find it, but for the moment, am holding my breath for the news and trying to stay afloat another day to take care of 3 extremely active children.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
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Member # 9734
posted
OMG, Dilly, you poor dear!
I am SOOOOOOOOOOOOOO sorry to find you here in this predicament!
I've been so caught up in my own caca that I haven't taken time to check in. I decided to look around to try to catch up & what do I find????
This is awful!!!!! I wish I could make this all go away for you. It's not bad enough you're sick, you need to deal wih all this poop too?!
FWIW- My grandma is 95 and has a massive tumor in from inside her nostril down the back of her throat (The Dr. in the ER was nice enough to show it to me (EEWWW!!). She is not a good candidate for surgery and it is terrible to see a woman, who was always so full of life, reduced to the state she is in now.
She has always lived her life the way she wanted to, often without tremendous regard for the feelings of her own children. My mother has been living with her and caring for her as she gets more & more insufferable. (God bless my mom)
As awful as she may have treated her children, she was always my buddy. When I was in my 20s, we used to go out for cocktails together and laugh about the fact that guys alway tried to buy us drinks. She was a real piece of work.
Recently, as her condition continues to worsen, she continues to say very insulting things to me. This is totally baffling to me, as we have never had any harsh words or animosity between us. I have always loved her and she me. I do believe that it has something to do with the lack of oxygen to her brain, the tumor itself or just her growing fear as she faces the reality of her own mortality.
I know she loves me, but can't help but wonder why she's been saying hurtful things. I know she doesn't mean to hurt me and I know she's not in her right mind. She's been saying hurtful things to everyone around her. It's tough to watch.
I don't know exactly what your father's state is right now, but it may be possible that he really isn't meaning to hurt you. I think that when people know that their death is impending they go through the stages of grief for their own loss of self, just as others do when they lose a loved one. One of these is anger. Perhaps you caught him in a stage of grief.
If he believes in God and has spent his life being neglectful and hurtful to his children, he's probably in a sorry state right now. It must be very difficult for him to have traded the love of his family for wealth and influence, only to have those things make no difference to him now.
If he gets another opinion that gives him more time, maybe he'll get past the anger and give you some more pleasant memories of him. I hope so, it would be awful to leave behind a wake of hurt feelings. People can't take back the cruel things they say or do to those they love, unfortunately they can only try to avoid doing it again.
Some are raised to see the expession of love as weakness or, through their own childhood experiences fear being vulnerable to hurt by allowing others to get close to them. I feel sorry for people like that.
I'm sorry, I'm rambling like a fool. I'm just grasping at anything I can think of that I think might possibly somehow make you feel better.
How's this: Maybe he's had the tumor for the whole time he was neglectful, was able to fight the effects for the year he was nice, but it just got so large that he can't fight it anymore? Maybe he's being nasty so you won't be upset when he goes? Maybe if your father wasn't the way he was, you wouldn't be the wonderful person you are. I'm glad you're such a sweetie and I'm sorry if he's why.
I fear I may not be doing so well with this. I'll pray for you and I'll pray for his soul. Please call me if you'd like to talk (or scream) about your dad, the extra children, the children who stuck you with the extra children, or even just the weather.
I'm sorry I've neglected you too, my dear friend.
hugs & prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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tailz
Unregistered
posted
I'm sorry - but please don't let them put a number on his days. That's the worst thing they can do. DNA responds to thoughts and expectations.
Have you considered trying Rife? I don't ever take 'there's nothing more we can do' as an answer. There is ALWAYS something. My prayers are with you.
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Vermont_Lymie
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Member # 9780
posted
Hi dilly, thinking of you. How are you?
Yikes, three little kids is too much to handle, even for many healthy adults. Hope that you can get another person to help you these july days with the little ones (like, their mom?) Or a college student on summer break.
Hope you are getting some time to yourself and help!
Posts: 2557 | From home | Registered: Aug 2006
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lymemomtooo
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Member # 5396
posted
Dilly, so sorry for what you are dealing with at the moment.
I was also estranged somewhat from my dad for most of my life. My parents divorced when I was 5 and I moved down on the shore w/mom to be with her parents and family. I saw Dad in the summer for a week or two and some holidays.
Later, when I was in college, he got me a car and I was able to visit him once a week. He helped me thru college in exchange for doing some housework in his rooming house.
We had ironed most things out and I discovered that he had not been trustworthy to any of his wives and could now understand why mom left him. It caused a major split again that did not heal until he knew he was very ill and came to see me to ask me to help him.
For the next 2 years, I did daily household chores and minor nursing duties. For the first time in our lives, he was able to reminisce about his life with me and tell me some wonderful stories. I treasure those two years.
He had been a polio victim as a child and when the cancer started to damage his legs and the Drs said it was only a matter of days before I would have to have them amputated, I started praying for a quick painless heart attack. It did not happen, but his lungs started to be affected and his breathing was very compromised.
On his last day, I was at his side and told him it was time to stop fighting and to let go. He did and it was very peaceful. So I hope you have a similiar experience.
You must treasure these last couple of years where you have had your father back and realize that his temperment may be out of his hands due to the cancer.
Please take care of yourself. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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AliG
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Member # 9734
posted
Anyone hear from Dilly lately?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
dilly, thank you for the update on everything that is going on, and 3 active kids!
the award goes to DILLY! hang in there kid.
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sometimesdilly
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posted
today is the first day to vaguely resemble normalcy in some weeks. i sent the grandchildren home to CA two weeks early, yesterday. it was a very good decision.
how in the world do any parents with Lyme deal with more than ONE child at a time is now completely beyond me. energy is one thing- there isn't enough for one,so i get that.
but, the constant noise of 3! the never having even 5 minutes of down time during the day, much less of rest! the all-day-long more than one thing going on at a time thing which not only I can't do, but which pushes me into Lyme rage/utter frustration within short order.
My hat is seriously tipped to those out here who are pulling off that brand of magic!
replies tomorrow, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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So sorry your time with your Dad didn't go to well.
My dad left us when I was 10 he seen us periodically until 1987. He seems to have vanished off the face of this world. He was a heavy drinker. He would be about 73 now, I am sure he has passed away.
Wow looking after 3 little ones is too hard. We have 2 grandkids 6 & 3. They come to stay for a few days at a time. I am so lucky they have a wonderful Granddad who takes over when I'm not up to it.
Take care your in our thoughts your friend Cassie
-------------------- Posts: 564 | From Toronto Ontario Canada | Registered: Jan 2002
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Dilly,
I hope and pray that you are hanging in there.
My Dad estranged himself from my sisters and myself when he found himself a new "love".
He never really participated in my life. Didn't come to my HS graduation.
I am suprised he made it to my college graduations....but seeing as I was the first
In my family to graduate from college and then get a graduate degree, I suppose he felt
Like he had contributed in some way and wanted some of the glory.
Just saw him last month where I got the "you look anorexic" lecture and
"You are keeping my grandchildren from me".
Yeah...sure....okay.
Thing is this. I have tried all of my life to have a relationship with him.
He has a history of alcohol and lying.
I have my own little family now.
We are still struggling to get on with our lives Post Katrina
And are all infected with Lyme including my husband and 5 and 4 year olds.
I don't have any regrets at this time with regards to our relationship.
I told him he had an open invitation to come see his grandchildren.
Nope, can't do that.....may get Lyme disease.
No, I should drive 9.5 hours, sick with sick children in tow
To North Georgia where there is no Lyme.
I guess what I am trying to say is that I know that I have tried and tried and tried.
I don't have any regrets because I tried.
I am at peace with myself. I can only hope and pray that he is too.
I hope that you find the strength to keep plodding forward during this most
Difficult time. I will continue to keep you and your Dad in my prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by sometimesdilly: today is the first day to vaguely resemble normalcy in some weeks. i sent the grandchildren home to CA two weeks early, yesterday. it was a very good decision.
Good job, Dilly! I hope you're getting some much needed rest. I'm still keeping you in my prayers.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
i'm sorry to not be able to keep up here, and to reply to those of you so generous with your time and prayers and supportive thoughts.
perhaps because i have again been off all meds for several months (not due to progress),and because of the intense stress at so many levels, i have been barely, barely managing to make it through each day.
i'm hoping to have a real conversation here soon. until then-
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
You poor thing!
No progress, no meds & all this garbage to deal with!
I give you a lot of credit for being able to pop in as often as you have been.
I think my crap life has just gotten so ridiculous now, it's absurd. I think there comes a point where you surpass depression & just end up in dilirium. Now there's something to look forward to.
I think we've all been in & out of that one a few times on here.
Here's a positive light for you:
My mom's mom has lived HER life with similar disregard for her children. She has been very ill for quite some time now & my mom's been living with her, taking care of "her (completely thankless & obnoxious) highness", without any help or relief from her brothers (problems of their own).
My mom is doing this while she suffers considerable pain from spinal stenosis. I really don't know how she doesn't crack.
Could you imagine if you had to live with & take care of your father, when it sounds like he has been just as miserable to you?
I'm really glad that he made an effort to be less self-absorbed for at least some period of time. I just wish he didn't flip-flop on you.
I'm still praying he'll come around for you (even though I'd really like to fly out there and smack him for messing with your head! ).
If you have no meds right now, you may want to try eating linguini with massive garlic & oil and plenty of salt. I do this from time to time. It usually takes me down for the day afterwards, but it seems to buy me a few good ones after that.
Garlic does have anti-everything properties. I wonder what would happen if I did that everyday? Ahhhh! I'd get some time alone!! (doubt it, probably just get yelled at for stinking up the house ) Nice thought while it lasted.
I really hate to see your sweetieness down in the dumps. I hope this all passes soon and you start improving again!
Hugs & more prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I talked to Mom and she agrees that it is very possible that gram's tumor is pressing on her brain.
I believe the frontal lobe affects anger & agression? Since she seems to be trying to alienate EVERYONE she's been close with, that really could be the problem.
I wonder if your dad has been difficult and angry with everyone else besides just you.
Sometimes things like cancer & lyme affect your brain in a manner that they make you say & do hurtful things you would never actually want to if you were unaffected.
I really hope things get better.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
dear Ali, the true sweetiest-pie of them all-
well, your mom's explanation about pressure on the frontal lobe describes what is been happening with ME the past few weeks for sure.
i've been lyme-raging up the wazoo and back- even sending nasty-grams to my MIL (NEVER a good idea, even when they're incredibly well deserved). i know i am WAAAAAY deep in Lymed-brain land. the deepest yet, really.
which is why i asked here about my father and my response. i call it reality testing. i honestly can not figure it out on my own. BUT. my best guess at the moment is that the reunion i thought my dad and i had via email exchanges of the year past was an illusion. the rest of our shared history- all the years before and what i saw when i rushed to his bedside-- are all of a piece.
i think my next step is to find a good neuro-psychologist. the neuro stuff has always been the worst of Lyme for me. i think now that i have not only lost any progress i made over the past year, but have gotten significantly worse in the frontal lobe department.
knowing just a corner of YOUR "caca," i wonder how you are doing it- you sound extremely coherent, and as always, you are beign extremely generous with your heart and your time.
it was a lucky day when i "met" you here, Ali..you are a very special lady... love, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Dearest Dilly,
It was a lucky day when we found each other !
It seems we've had so many similar experiences and similar symtoms, flares, etc. It makes it very easy for me to relate to you and I know you understand me.
I'd really like to know what's been going on with your Tx, since we seem to have been running such similar symptomatic courses. You have been under so much stress lately, I'm sure that has to have set you back.
I did make a great deal of improvement in the neuro stuff. Every time I start feeling it creep up again, I panic & freak out to LLMD.
So far, it seems as though babesial flares start taking back progress and re-Txing Babs helps me regain my ground. I've been taking Doryx (delayed release Doxy) 300mg/day, this has seemed to hold the at bay, unless Babs flares.
The last Babs flare, he kept me on the Doryx with the Mepron & Txd for 2 months. I guess another couple of months will tell if we got it this time.
I stopped the Doryx and switched to Suprax for 14 days. The started sneaking up quickly. LLMD put me right back on my Doryx and I'm feeling much better again.
I wonder if we have the same stinking strain of Babesia?
My LLMD had remarked that he was surprised at how well I was handling the 300mg dose of Doryx, for my size (120 lbs) and he was "quite pleased". I tried to think of anything that I regularly do that might be odd (no comments there, please).
I drink a lot of Red tea (aka-Rooibos(Kalahari brand is my favorite, Twinings has one coming out soon)) I have been doing this for a lot of years. When I started Tx, I was drinking more because I tried not to drink so much coffee.
I did some research on it lately and it is a good source of Superoxide Dismutase(SOD)(antioxidant which crosses the BBB). It is also rich in minerals. I don't know if this could be making any difference in my responses to Tx, but I actually like the taste of it so I drink it regardless. It makes really good Iced Tea, too.
I'm sorry I keep writing novels. Hopefully, now that the Doryx seems to be pulling me back out again, I'll regain contol of my verbosity.
I really wish I could find a way to help you.
Lots of hugs & love, Ali
[ 02. August 2007, 02:34 AM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Dear Dill-Pickle,
I'm so sorry to hear all of this.
Be your best self, like you always are.
Don't let anyone be mean to you, whether they're related to you or not.
Pick up "Lessons from the Light" next time you're in the bookstore. It will help.
Sending a warm hug,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[confused]](graemlins/confused.gif)
![[Smile]](smile.gif)
). It helped after a few months when people started acting like I should "get over it" and all that. I had alot of feelings come up that were sort of not connected to Daddy especially but just left over grief from childhood. ![[bonk]](graemlins/bonk.gif)
when he came up to her at their wedding and said, "I know I haven't done a good job of being a father for the first 25 years of your life, but I promise I will do better the next 25." ![[Eek!]](eek.gif)
![[Frown]](frown.gif)
![[woohoo]](graemlins/woohoo.gif)
![[shake]](graemlins/shake.gif)
![[Mad]](mad.gif)
).![[Big Grin]](biggrin.gif)
(doubt it, probably just get yelled at for stinking up the house ![[Roll Eyes]](rolleyes.gif)
) Nice thought while it lasted.![[hi]](graemlins/hi.gif)
![[dizzy]](graemlins/dizzy.gif)
at bay, unless Babs flares.
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