Topic: been a tough summer and I'd really appreciate your prayers
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Haven't been posting much lately.
Things just have been very tough in so many ways this summer. Nothing seems to be turning out right, despite best efforts and $$$ spent. I still have sick kids and am sick myself and I am so OVER all of it. I just want to pack us all up and run away from home.
Also have been dealing with extended family stuff that should have been resolved years ago. I have found that my siblings are useless and actually counterproductive in this particular situation. I so wish I was an only child.
They have NO idea what hell we've been through with these DDs. The times we've seen them, we've not complained and have collectively put on "our best face" so to speak.
I could go on and on as most of us here surely could.
Just please keep me and my family in your prayers tonight. I really need them.
Thanks in advance.
Posts: 1885 | From here | Registered: Jul 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I'm sorry Beaches :-(. Sending you good thoughts and prayers-
Let your extended family stuff go- you are not obligated- too much- just hunker down for your little family at home the best you can right now--
You don't have to go anywhere and put your best face on. Surprise says so, she gets it ;-)
Hang in there------
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Thanks for that, surprise. I love that you "say so" and that you "get it" I appreciate a strong woman's opinions and thoughts (assuming you're a female!)
I'm normally the one extending myself and offering all the advice that's fit to print.
Lately, I've just felt that I'm the one in need of advice and good thoughts and prayers.
So thanks for your reply. I appreciate it very much.
Posts: 1885 | From here | Registered: Jul 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Well yes of course I am a female Mom also with 2 young daughters, one who struggles, $$$,
you betcha I get it, and I do say so! Put all the rest aside. You can't keep giving, giving, giving. I know the hunker down very well.
Take care of yourself too here. You have to. Lyme disease teaches you that- no-one else is going to put you first but you.
We go through bad spells here, too- and it is hard, I've had my own (more) grief around it lately- trying to feel the feelings and heal/ accept.
And no, outside family very often doesn't 'get' it- I think in our case, it's too painful for them to really get it, so they don't want to see it.
But, not your issue, right? Thinking of you with good thoughts-- it'll be okay.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Thanks so much for that. I needed to hear what you said.
Posts: 1885 | From here | Registered: Jul 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Ditto to what Surprise so eloquently stated. Nobody gets this illness except those who are unfortunate enough to be living it. The important thing is to take care of yourself and your kiddos. I know what a tall order that is. This is such a hard journey for all of us.
I just keep hoping that I will be better and stronger when this nightmare is behind me. (yes, I still have hope that someday I will look back on these days and thank God I am in a better place...) Prayers being sent your way. Posts: 2386 | From New England | Registered: Aug 2011
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
beaches, we understand - been there, done that! Had another go-round last evening with extended family member.
The best advice I can give (and I'm speaking to myself first!) is to turn them over to God and let Him deal with them.
I've come to the conclusion that at this point, its impossible to reason / explain anything about this disease to them. Their minds are like concrete - all mixed up and firmly set!
Praying for you and all of us in this time of trial.
Posts: 2262 | From USA | Registered: Aug 2011
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Oh Beaches...I'm so sorry to hear that your family isn't being supportive. Here...I'm sending you one of these.....
I went through very similar issues. What I ended up having to do is focus what time and energy I had on getting better. I kept a journal during treatment which helped me to deal with my feelings.
When I read that journal now almost 10 years later...it makes me cry.
I've tried to get my family to read it but they're not interested. I wanted to let them know what I went through and how it changed me.
I'm still dealing with residual emotional issues from the lack of care during my treatment but I learned a very valuable lesson.
I am worth every ounce of effort in having a great life full of wonder and joy.
From me, to me.
And so are you Beaches.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6168 | From Columbus, GA | Registered: Jul 2004
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
So sorry to hear of your troubles. We can all relate, tho'.
The above posters are right about letting go of family that doesn't get it.
They'll drain us dry if we let them.
Will send up a prayer for you and your children.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Dear beaches,
I am praying for you, dear one. You and your family are so precious to God.
May you feel the strength, hope and love sent to you, and the same that our Lord gives to us freely.
I recommend listening to music on KLove as often as possible. It is positive and encouraging all the time.
On their site, scroll over the heading "Music Room" and click on "Listen Online".
PS...4 years ago, some of my extended family was telling me that they were sick of hearing about Lyme. I stopped talking about it to them completely unless asked about it (not that you are, just saying this is what happened to me).
4 years later, the same family now asks me for advice after finding out others in the family have Lyme also, and they are scared to death of finding a tick on themselves.
All in due time. God will use your situation for good.
Blessings and hugs!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Dear <<<<< Beaches >>>>>,
Praying for you, we to are in the middle of family issues, and w/o $$$. I so much appreciate Lymenet because,they do get it here,and are willing to share and lend their ear when we vent!
- Dear Lord, Beaches and her kids are so tired of the struggles, the lack of funds,and family who just wont get it. Please blanket them in peace and love.
Don't let the storms of life get them down but give them rest and strength for the coming days.Please let them sense Your presence and bring them hope. In Jesus name, Amen!!!
Jus' Silverwolfi here
-------------------- 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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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I missed seeing your posts! I'm sending up prayers for you.
THANK YOU ALL so very much for your thoughts, good wishes and prayers.
I can't even begin to tell you all how much your posts mean to me.
I was having a very rough day yesterday (Sunday) and reading what you all wrote brought me through a very bad day.
So, thank you all again for responding to my post.
I very much appreciate all the replies. I know you all are dealing with so much of your "own stuff" as it is.
Having you respond to me about "my stuff" is so very much appreciated. Thank you all again and best wishes to us all.
Posts: 1885 | From here | Registered: Jul 2012
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Hugs to you Beaches. It is not easy.
Hang in there!!!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Beaches: I am very sorry that you are having a bad summer. It sounds very stressful.
lyme has a way of peeling layers off relationships-letting what's really underneath, bubble up to the surface. Honestly, I hate that aspect of this infection. I preffered my bubble before it burst.
And extended family...sigh. I feel your frustration.
My aunt thinks that I looked "really good" and that lyme is the "new disease du jour". At the time she saw me, I was covered head to toe in RMSF rash. I literally "boooo-ed" her in my mind. Now everytime I hear her name I Boo her in my head. It makes me feel better. I don't have the brain power to come up with witty retorts anymore, so BOO is the next best thing, I feel.
I don't know if this will help you, but I mean it sincerely...
Next time you have a negative interaction with extended family, just know that if we could, everybody from this forum would be there right beside you to support you. We would back you up, and stand right beside you and help to give you strength.
I will be sure to say an extra prayer tonight for you and your children.
Best wishes, Greta
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Thank you Jane and Greta.
I have made headway with the extended family on an issue regarding a close family member that's been simmering for quite a while. So this is good news. I am a VERY persistent person and I just refused to give up on this one particular thing. Glad I didn't, though it was very difficult to endure.
Greta, I think you were all beside me in support. I thought for sure hell would freeze over before I got the response I wanted from the extended family just today. So thanks, because I do think that everyone's support here really helped turn the corner re: the extended family. Just goes to show that prayers and good thoughts and wishes really do help.
Now my mind is much more relieved. But please continue keeping my little family in your thoughts and prayers as we are still dealing with this DD.
And Greta, so sorry to hear about your aunt's reaction. Sometimes people are just in denial and can't face illnesses their loved ones are dealing with. Sounds like your aunt is one of them.
The thing that bothers me about your encounter with her is that she thinks LD is the "new disease du jour." Why do you think she thinks that?
As for her thinking you looked good, in my experience (as an old<er> lady lol) people generally are relieved when someone who is ill "looks good" so I wouldn't necessarily hold that particular comment against her.
If you have a close relationship with her, could you possibly meet her for lunch or dinner somewhere to "clear the air" so to speak?
I do understand the "booing" but if there's a chance you can salvage the relationship, go for it. Sometimes it's the weakest and sickest who have to make the first move.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Best wishes to you Beaches. I know it's very difficult. I'm going through some very difficult stuff as well. Things could be better but they also could be worse. I try to find some perspective in that.
It's very diffcult for people who haven't dealt with these "outside of the box" illnesses to understand how devistating they can be. It's so hard because we get no validation in our suffering.
I pray for all people who are suffering with this & other maladies on the planet. I wish I could be more helpful but I'm dealing with my own difficulties right now. I guess we can try to send love & healing from the source even though we are ill & fighting some difficult problems. That's one thing I can still do...
You are not alone.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Hi sparkle! Thanks for your good wishes. I am sorry to hear you are going through your own difficulties.
I've often said to myself that things could be better but they could also be worse.
But then I snap out of it say WTH? (OK I usually say WTF but I am trying to be PC here) On what other planet or plane or universe do other people have to deal with this ungodly illness PLUS all the other usual crap life throws our way?
You are so right that we do not get any validation of our suffering. What we go through on a daily basis constitutes an unspeakable and unexplainable hell. One really has to "get it" in order to "get it" though I wouldn't wish this on anyone (well almost anyone).
Thanks so much for your reply. And you are right, the one thing we can do is send love and healing despite our own difficulties.
You are not alone either.
Posts: 1885 | From here | Registered: Jul 2012
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posted
Beaches, There is no one in my family that understands. I have dealt with health issues on and off for the last 18 years so I think they may be thinking, "Here she goes again."
Sometimes, I think I may be projecting my own thoughts on them but most of the time my family either changes the subject or is just silent.
Once something becomes chronic, people get "tired" of hearing about it just like we get "tired" of dealing with it.
(The one exception is my husband who has listened tirelessly about it for two years. His usual comment is a prayer that goes God, please heal my wife so she can spend her time and energy on what makes her happy instead of researching her illness.)
The one blessing in disguise is that the emotional stress I put up with in the past, I can no longer physically handle.
When I start to get emotionally upset, my neuropathy and stomach acts up. That is my clue that I need to change direction.
Before, when I got under stress, I just ignored it. The stress was always bad but I had the physical reserves to push past it.
So, I am grateful for that.
Blessings to you. May God continue to make His face to shine upon you and give you peace.
Posts: 538 | From kentucky | Registered: Nov 2011
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Hang in there! Everything changes...
According to the laws of physics - we can manifest what we want. But Mick Jagger says, "You can't always get what you want but if you try sometimes, you get what you need..."
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
This is all so true, not being understood, not being seen, others having no idea what we're going through.
I console myself with the thought that one day, they may come to me with a recent tick bite, or concern about someone and ask me what I know. It has happened, and with an "how do you do this?" look in their expression.
Even though we are challenged, we are strong for going through all this, stronger than others give us credit for.
How that plays out: other stuff in life doesn't seem that hard or important, so I think we weather the vicissitudes of life better than others do. Just my opinion...
Posts: 13117 | From San Francisco | Registered: May 2006
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Good stuff Robin. And Sparkle, I happen to love Mick Jagger.
I had to give a 10 minute synopsis of my daughters long and intense medical history on the phone last night to different
Pediatrician in our practice- the response was sympathy but also wonderment- nonetheless, I got off the phone a little teary,
always sobering going through the details out loud. But, then I thought: I educated and sparked an interest in this M.D's mind about PANDAS/PANS,
and now if she comes across a new child in the practice who presents, I know it will give her pause, perhaps even treatment for the child.
In the conversation, I heard myself say: This may sound off the grid to you, but I promise you it's real. I am living it. (strep again, OCD)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
beaches, i so sympthasize with you.
everybody on here knows the problems i've had with husband, family and all.
plus in the last year we've lost two very good family friends. overall, tho, 3 total. two of the deaths were avoidable in our opinion.
i've learned not to discuss lyme at all, except on this board.
seems like if somebody sneezes, i get pneumonia!!
hang in there, we are all here for you.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Thanks Lymetoo
Soccermama, I agree that once something becomes chronic, people get tired of hearing about it (not that I talk to people about it unless asked, and even then I keep my comments limited unless someone is very engaged). How sweet your husband is in offering up a prayer for you? He sounds like a gem.
I totally understand not being able to physically handle emotional stress that I too tolerated in the past. I also "pushed through it" much to my own detriment, but I didn't see a way out other than to help solve the problems of extended family members.
And that was compounded by the fact that my good and sound advice (that is apparently now an "ah ha" moment) fell on their deaf ears, which was extraordinarily frustrating to me. And with everything else I'm dealing with, I sure didn't need that extra strong dose of stress in my life.
Like you, I had the physical reserves to push past things. But then again, I think it was to my own detriment.
I've had to draw very clear lines in the sand these past few years with close family members. This has been extremely difficult for me, but very necessary given the circumstances of my immediate family, which has to remain priority #1. I appreciate the blessing you offered up for me.
Sparkle, I'm a rock 'n roll girl. Wanna see if we can score tickets to a Stones concert?
Robin, you're a better person than I am. I don't think in terms of anyone coming to me asking for my advice about a tick bite. If someone did, I'd surely offer them anything/everything I know.
I recently tried to speak with a close family member (a medical professional, no less) about the need for long-term abx for Lyme Disease (if my kid had syphilis or TB, would she be denied treatment by an insurance company?), MTHFR, GF diet and a multitude of other health issues.
I was pretty much attacked for my statements and what I know to be true. Told this person all I do is research to get my kids well. I was SHOCKED because I thought this person understood at least some of what we've been through, but apparently I was wrong. I immediately cut off contact due to the hurt and because I don't need ignorance in my life.
I know I am strong, but I've always been a strong person who has fought for what I believed in years and years before this dreadful cloud loomed over my family.
I think most here are very strong and are able to weather the other storms in life that challenge us. But I also know a couple of folks who opt to "opt out" and not fight and remain victims.
surprise, I SO know what it's like to give the medical history. And when I'm done doing it, I wonder how it is I am able to recite so many details of it all throughout the course of so many years for two children. Yet, I can't remember what I cooked for dinner last night.
And afterwards I just want to cry because really, what mother should have to retain all those awful memories in her head? I hope when this nightmare is over with I can take a pill to just forget it all. It really is just too much to bear sometimes.
You did a good thing. You educated someone and that will make it easier for the next parent who comes along.
Hi Randi, yes I know about the problems with your hubby and family. And I remember reading about your friend Ann who recently passed. I am so sorry to hear that. Thanks for your good wishes.
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