Topic: Ever feel like this disease is going to kill you?
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
To All:
I wake up every morning thanking God that I'm alive... Anyone else do that???
I pray every morning and every night that he keeps me on this earth to take care of my wife and son.
These past months have been extra rough on me. I'm feeling really really sick. I can't stress it enough.
I always ask myself before I close my eyes for the night... Will I wake up tomorrow? It sound sick and strange, but it goes through my head everyday.
I almost break down in tears about it. Im only 23 years old. I have so much life ahead of me. This disease is HORRIBLE!!!!!
My wife feels so bad for me and my son is too young to realize that his daddy can't take him fishing or play ball because he is too sick. He is almost 3 now.
I found out I had Lyme when he was just turning 1. I haven't been able to play or do any active things with him because I'm so sick.
I feel so bad for my family.... I don't know where I'm going with this post, just venting I guess... Does anyone feel like this???
posted
Hi Roy, I know what you mean. I try and forget I have Lyme, but I feel so bad it's a constant reminder. Have yoyu gotten any treatment at all? I hear from people that you can get better. Maybe one day you will wake up and feel better : ). I will be getting my picc line soon little scared. I am hoping I will feel relieve. Do you go to a support group? find one near you, it helps to talk with people that are like us. You find out that you are not alone. Take care and feel better.
Posts: 3 | From Gainesville, Va | Registered: Feb 2009
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Roo:
I've known I've had Chronic Lyme,Bartonella, and Babesia for 2 years now...I think....
I have a very progressive treatment and nothings helping. I'm on my second Picc Line now.. Don't worry at all its painless.
Im currently in the process of starting my own Support Group, since there is none in my county.
I see that you are new to this site. Did you catch the Lyme right away??? Doctors say I've had it for a long time...never new it. Many members here will tell you the same thing.
You have come to the right place though. BettyG's Newbie Package will help you out a lot.... she is a godsend!
Well thanks for the reply...hope you kill them bugs because I sure cant!
I went through IV Rocephin,Doxycyclin,Zithromax,Invanz,Tygacil,Vancomycin,Clindamycin...which I'm currently on STILL!! Plus many orals...
so take care of your self and if you have any questions don't hesitate to ask!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yep, i wake up practically every morning going "oh well, here goes another pain filled day."
you try to forget you have it but you always feel so bad, you can't.
dang...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Yes pain filled indeed.....
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by Kreynolds:
Im currently in the process of starting my own Support Group, since there is none in my county.
You have come to the right place though. BettyG's Newbie Package will help you out a lot.... she is a godsend!
I went through IV Rocephin, Doxycyclin, Zithromax, Invanz, Tygacil, Vancomycin, Clindamycin...which I'm currently on STILL!! Plus many orals...
hi roy, i've been calling you KATIE !! uffda; hope you're not offended!
thank you so much for the wonderful compliment you gave me; makes me feel good that i/others HAVE made a difference on this board, and helping people start long path to REMISSION!
if you can't get a support group going; WE ARE YOURS! we are here 23/7 ... 1 hr. no one is here from all the different continents we live on! how many support groups offer that to its members?
best wishes; it's nice also for spouses to have their own to compare and share tips too.
of ALL meds you mentioned you are/have been on, only on doxy from your list; 2 piccs .. uffda.
roy, that's why you must keep on fighting as long as you can for your wife and that precious 3-yr. old!!
stay away from folks who don't believe what you have and are DOWNERS; just be around folks who SUPPORT YOU, and we are walking in yoru shoes!!
best wishes for happier days!
have you filed for SSDI, ss disability insurance benefits? see my extensive info in my newbie package links; it's all at end of package, but use table of contents for help; 35 plus pages from many sources!!
IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks Bettyg!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Kreynolds,
I understand completely. I am in your shoes as well.
Here is to HOPE, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
posted
Roy, it is so hard to face each day when the pain just won't stop. I know, I have been going through it for a long time too.
Even after all this time, it still unhinges me when I can't be the mom I want to be to our 3 children.
Has it affected our girls. Yes it has. Mostly positive though. They are caring and compassionate people. Not self centered like most teens we see, not at all materialistic.
Every day I am so thankful that they are part of my life, and that even though I may not be the perfect healthy mom that they deserve, I give each day my all, and they know this.
I hope that you get some relief soon, it is a long process especially when so many coinfections are involved. What have you tx your babesia and bartonella with? Aggressive tx for Bart and mycoplasma helped me turn the corner.
Best of luck to you and your family.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
njlymemom...
Im currently on Iv Clindamycin... Im taking Zithromax and Mepron for the Babs... I guess the Zithromax is supposed to be hitting the Bart too... Im also on Plaquenil... THANKS FOR ALL YOUR SUPPORT! IT MEANS SO MUCH!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
ohhhhh boy not feeling good.....................................
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hey Roy,
The first year I was sick, I went to bed in a panic every night. I felt like I could not breathe well (Babs), I was a teen, in high school and I had to have my mom sleep with me every single night. She was afraid too, with all the physical problems I was having but I checked out OK with the dr.
It is a frightening feeling, I KNOW! Every time I've relapsed (not knowing 'it' was Lyme) I've felt like I was either gonna die at night, or not make it through the day.
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Ocean:
When I go to bed I feel the same way.. that's wierd that that you brought that up....
I already have panic attacks and I am taking meds for that. I knew I had Chronic Lyme and both strands of Bart.
I requested my doctor treat me For Babs because I have all the symptoms....
Since taking Mepron with the Zithromax and Plaquenil..its only been two weeks I've noticed I'm more antsy and I have a hard time sleeping because I feel like I cannot breathe....
It comes in spurts.. In the morning its hell after I take the Mepron.. my stomach is in knots and any movement I make I have to hold my breathe because it hurts so much...
at night Im antsy... although I am very tired in general It takes me several hours to fall asleep.... plus I sweat like crazy!!!
Does that sound like Babs to you??? How long did it take to get relief at nightime?
Thanks again for your response... It's exactly how I feel at night!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Babs???
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi Roy,
Yeah, it really REALLY stinks! I'm much better at night now, every once in awhile I'll feel like that. My first 2 years were the most awful time of my life.
I have yet to start treatment for Lyme. Both times I recovered I went on a raw diet with a lot of carrot/wheatgrass juice. Course I didn't know I had Lyme. Just knew that AWFUL feeling went away and the panic attacks and fatigue, ect.
I tested neg with Igenex with co's, haven't been tested by Fry or any others. However before I ever took Igenex for Lyme or anything, an MD who uses an electrodermal testing machine tested me and told me I had Lyme and Babesia (which I'd never even heard of Babs, had to go home and look it up).
I am SURE that is what was causing that for me. I too have night sweats (they come in spurts for me). Right now my anxiety is much better than last fall, fatigue, ect. It feels good to feel better. BUT I'm still having missed heartbeats which scares me. I hope my new LLMD whom I see next month will order a cardiac workup!
Please know that you are so not alone. I felt so alone for years, not knowing that anyone else was going through what I did.
I understand about wanting to be there for your children. I'm 30 and have a 7, 5 and 2 year old, it scares me when I feel really bad and feel like I won't make it.
Well, my silly newfie is getting into something, need to go take it from him!
posted
Yeah Roy, I was just saying to a newbie on another blog that i would of called it quits a long time ago if it wasn't for my faith in God. The hardest thing though to be Honest with you is to praise God when things are going bad.
it's almost like the Devil is using this Disease against us saying "what kind of god would let this happen" or maybe "this is punishment for something you did" he is a liar and the father of all lies and i am touched by your willingness to give God the praise anyway because He is worthy of our Praise.
feel better Johnny
Posts: 128 | From web | Registered: Dec 2008
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks Ocean and johnnylight..... Your support is much appreciated!!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
I have been in a coma and my family told that I would not make it through the night.
I have had open heart surgery because of Lyme, so I try to remind myself when I have a day like I did yesterday when you are so deathly ill that it can be worse.
It is amazing though how quickly we can forget. I forget every single day, and have to coax myself to remember the hell I have been through. Even having to go through 6 hours of IV abx treatment everyday for 9 weeks was hell. I was also in the hospital for a month straight. Then had my open heart after that.
My point is to tell you that it can be worse, much worse. Try to be thankful everyday for what you do have, and what you are able to do, and accept it.
It takes God almost taking it away to realize that fully though, I think.
Hang in there!!!
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
astriapage:
wow I'm so sorry to hear about your ordeal....
How did the Lyme cause you to have open heart surgery?
and did the Lyme put you in the coma?
Thanks for the reminder and I hope your feeling well... best wishes!!!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
posted
The Lyme destroyed my mitral valve. I have been told that this is rare with Lyme, but cardiac involvement is very common with Lyme.
I had a fever of 105 for about a week, and finally slipped into a coma from it.
I continue to run a fever everyday-usually 100 to 102, so I am always scared it will go higher.
When I was on IV abx i started to get better, but now I am getting worse again and of course scared to death.
I have had Lyme for over 15 years so....
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Yes. It is so disturbing at times, especially when I feel a little better, then slip backwards. It's not just the pain and fatigue, but just that feeling of illness that is so hard to explain.
Sometimes I feel like I will die from pure exhaustion, like I might just collapse in the floor and that will be it.
This illness is so crazy. You can feel like you have achieved improvement, then have all that taken away from you. Naturally that is frightening and makes your mind wonder if you are fighting a loosing battle.
Sorry, this is not very uplifting is it? The fact is, I do know people that were ill for many years and they did finally get better. It took years to get there, but they got their lives back. So there is hope. And hope is something we must never let go of.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Astriapage:
My thoughts and prayers go out to you and your family....
hang in there... you have been for 15 years!!!
I wish you the best...
So now when I'm feeling like crap and thinking its the end of the road at least I know it could be worse.
Take Care!!!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
posted
I have been in the dumps lately. After months of IV, I am in pain and brainfogging. Wondering what should be the next step.
But was instantly made to feel better talking to a good friend who has mild Lyme.
She knows about it more than anyone because her mother suffered with it undiagnosed for 20 years and was treated for 10 years. So, 30 years total of Lyme.
She reminded me "There will be better days. If you keep your focus and get the treatments you need, you will get better."
She always reminds me that everything helped her mom a little bit.
You may have to try different things and different doctors even.
Detoxing is important.
Her mother was bedridden, her heart was beating 30 beats a minute. Her heart was so infected no surgeon would operate.
Finally, the doctors put her on IV antibiotics for 9 months.
Two years after treatment started, she was able to go to my good friend's wedding in a wheelchair.
That is where I met her (how ironic, now I have severe chronic Lyme and I had heard about it for years).
She is now working full time as a teacher. Lyme is almost a distant memory for her. She leads a full life.
She has a pace maker and will be on antibiotics for the rest of her life, but her pain and fatigue are completely gone.
I have a hard time being patient, but I do KNOW I will get better. If my friend's mom got over it, anyone can. And you will too. It just might take a while.
Also, realize that your depression is a by product of the Lyme - like any other physical symptom. A good Lyme-pschologist type told me that. That helps me pull it together and put it in perspective.
Hope this helps!
Posts: 4 | From Atlanta | Registered: Feb 2009
| IP: Logged |
posted
I am sending you a PM praying that you can talk about your friend's mother since she had cardiac involvement. My heart was also really infected.
My heart started racing when I was reading that-I desperately want to speak with people who have gone through what I have!
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Georgia:
Wow that is a sad, but incredible story....
I am sorry to hear about how your feeling!!
I feel like crap too. Thanks for your story and support!!!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
Here is what struck me about your post (among other things):
"I wake up every morning thanking God that I'm alive... Anyone else do that???
I pray every morning and every night that he keeps me on this earth to take care of my wife and son."
Those lines struck me, because my thinking at really bad times, has been the exact opposite.
In my case (and I have it posted here) that on mornings like that, MY first thought of the day is
"oh, crap. another day."
And actually disappointed that I woke up, and would have to go thru another 24 hours of whatever crap I would be going thru.
Could be pain.
Could be any combination of the dozens of symptoms I have.
Could be the money aspect (dont even go there).
Could be the family / relationship / isolation aspect (dont go there either).
There are days when the whole crap stew-pot is in full boil.
This disease is a MAJOR pain. No doubt about it.
But enough about me.
"I wake up every morning thanking God that I'm alive... Anyone else do that???
I pray every morning and every night that he keeps me on this earth to take care of my wife and son."
You are already one step ahead of the game here, whether you know it or not. Actually four.
I say that because you have four things that give you purpose:
God Wife Son Thanks
When things get very bad, I have found that unless you find something to hold onto to keep going, you will give up.
Those four things are your things to hold onto.
I had to find something for myself, because I dont have three of the four you have, and the one I do have I get mad at alot these days.
And then I realized, THAT is what I use to hold onto, and get myself up in the morning and go on.
For me, it's getting mad!
Not unconstructive anger, but anger at the health care politics, the ignorance, the sheer stupidity of what should and could be.
Not a day goes by that something about Lyme doesn't P me off ---- but for me that's a good thing
because it's another letter sent to a senator, another fight with social services, another argument with a doctor, another hope to feel better so that I can go out there
like Dirty Harry
and tell 'em to Go Ahead and Make My Day.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
| IP: Logged |
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Miss Mari, I agree, it is GOOD to want to live! The first 2 years (or maybe 1.5 years I don't remember, it was too long ago!) I was SO thankful that I woke up alive, since I felt like I was dying all the time.
Then when the depression hit,I could have cared less. Then I wanted to die, thought about killing myself, ect.
Although I am not in the depression again, I can imagine if I DID get there, I would not want to die because of my wonderful kids. Kids do give you reason to live because you are their everything!
Although they make it harder for me to get better because I cannot lay in bed all day even if I feel like it.
Good point though, hope you are doing a little better.
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
MissMari:
Thanks for your reply. Yes I do have a lot to be thankful for,but I also have a lot not to be thankful for.
I started a great job with great benefits when I was 21... the time my son was born.
I worked for a township outdoors mowing, cutting trees down, etc....
I had my foot in the door and was going to be able to retire at the age of 46. Within the 1 1/2 that I worked there I got bit.
I got bit probably when I first started working there, but never knew it. Then one day WHAM! I had to leave work early because I was dizzy and I felt like I was gonna pass out.
I go to the doctors, they take blood of course. Then I get called in right away.... The doc said "Roy, you have a positive 7/10 bands on your western blot for Lyme."
So I thought, well what next... I take some of them green oral pills and I'll be fine! WRONG!!!!
Long story short... I've had 2 spinal taps.. 1 came back positive the other they couldn't get enough spinal fluid out.
I've had a SPECT scan that came back Moderate-Severe. I have both strands of Bart and I currently found out I have Babs.
I'm 23 now. My job fired me. I'm on Workers Comp/Disability.
So yes I should be thankful and I am thankful, but like you I get really mad! I had it all,but lost it. I have the love of my wife and son.
I hope someday I can take him fishing and play ball with him...I wan't to be the father that my father was to me.
Workers Comp is a whole other issue that I can go on for hours about, but I'll spare all.
I don't feel like I am living anyways. I actually feel like I am in hell. I get excited for a few minutes over something such as making a hair bow.
I go to the store to buy the stuff, and before I am out of the store, I am completely wipped out. Exhausted. I give new meaning to the term SHOP TIL YOU DROP!! Posts: 893 | From Florida | Registered: Dec 2008
| IP: Logged |
posted
Yeah i agree with that.. well maybe a mini Hell LOL! Lyme is such a dilemma you can't work you can't go anywhere by yourself, funds are very limited. I used to walk around with a wad cash when i was working now if i have 5 dollars i feel rich. I wonder if it would be better just to die and move on to the next life, after 8 years it doesn't seem like this darn Disease is going any where. It makes you feel so ashamed that you can't work and function normal and family members keep asking "are you working yet?" they just don't get it.
Posts: 128 | From web | Registered: Dec 2008
| IP: Logged |
posted
Yep, johnnylight --- I get that "aren't you working yet?" too!
Need Lots of Help --- gotcha as well: my life this day is nowhere NEAR what I hoped or even imagined it would be.
In fact, I have to say, that was what played a big part in my depression --- missing what I have lost (and it's alot).
I see that many of us here have been brought to our knees by Lyme.
If you would have told me 22 years ago (1987 --- the best year of my life, and the last year I actually "lived" any semblance of a "life") that by the time I turned 50
I would lose my home, my family, my relationships, my job, my work, my finances, control over parts of my body and my mind
I would have either said "you're crazy!"
or I would have jumped in front of a bus.
LOSS is a VERY BIG PART of this disease!!!!
Seeing it is devastating; remembering what had been is terribly sad; thinking of what may be ahead is the most frightening thing I have ever experienced.
THIS WAS ME:
I graduated HS at 15, nursing school at 17, got my second degree as a lab scientist (of all things in Microbiology!) at 20.
I also had a very active and very happy social life in the music scene --- hung with some of the biggest musicians in the coolest clubs and venues in the NJ / NY area.
I began teaching college at 25.
Had a house of my own by 28. A beautiful backyard, quiet environment.
Anything I wanted, I got it. I was paid well. You name it --- cars, clothes, jewelry, cool boyfriends, a Harley, tattoos.
I wish I could show you the pictures.
I wrote music articles. I wrote science articles. I was politically active. I worked for the AIDS community.
I had a family that visited nearly every weekend.
When my parents became ill, I took care of them for years.
Do you get the picture?
THIS IS ME TODAY:
I lost ALL of the above.
I live with my 81 year old aunt in a condo; have about $5 in my pocket if I look hard enough.
Bankruptcy. Going for another.
I was replaced during my last medical leave last year.
I have not heard from any family member since 1998.
I am not exactly "relationship material", unless he wouldn't mind being with someone who loses her way home, spends most of the day exhausted and in pain, and often can't think of words like "chair" or "clock".
My car was repo'd last year; right now every month is a scramble to keep it.
At least once a month I drive past my house, now owned by someone else.
I won't go into more detail; I am tired just thinking about it!
SO! What can you do?
I have no idea. I have no real advice. All I know is that part of the time when I'm at my lowest, and the "way out" is you-know-what
(and yes, I have had my plans for pills, bridges, car-crashing, etc)
I have been remembering and pining for my old self, like if I thought hard enough, all of this would go away and I'd be back "where I belonged"!
It really makes me feel like hell.
But I have learned to look at the few things I DO have with more appreciation now:
the stars in the night sky,
the food in my cupboards,
the bills I did manage to pay,
the friends that do email and call me, even when I can't manage to answer,
the animals in my front yard,
that I can still read a book (may take me hours to read a page, but I can still do it!),
old tv shows on dvd-rental that make me laugh (Hogan's Heroes, Green Acres, F-Troop, Keeping Up Appearances, etc),
my radio show is my sanity,
and I still have a handful of musicians that are kind to me, even though I can't do a thing for them!
I guess that what I have had to learn to do is honestly get to a point where I could live with what I've got,
And that like a tornado, when you're spiraling downwards, eventually that spiral will take you upwards as well
It may deposit you on someone else's lawn, but at least you will be somewhere.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
| IP: Logged |
posted
That's why i stick with the Lord in my life because Life is so short and with Gods grace we have something to look forward to. I think it's like a big funnel and you just can't get away from it (judgment day) everyone will be there standing front and center. I am just glad i am a sheep and not a goat don't want to have to go from one extreme to another. After all this suffering wouldn't it be nice to go to paradise.
Posts: 128 | From web | Registered: Dec 2008
| IP: Logged |
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I used to look forward to getting to bed at night because it seemed that sleeping was teh only reprieve I got from my symptooms.
Now for the past week or so, I'm starting to have issues as I'm going to sleep, and sometimes it wakes me up--shortness of breath, muscle twitching, panicky feelings, poundng heart.
I had been feeling somewhat better--still having symptoms, but easier to live with.
Now I'm back to feeling like I'm not going to make it through another year.
I'm not officially diagnosed yet (hopefully next month), so I'm not on any meds right now. But I read some of the posts on here and just get so filled with despair.
What if the meds don't work and actually make me feel worse? And then I get the what if it isn't Lyme thought. What else could it be? Is it something that is going to kill me eventually? Am I going to end up being more of a burden than I already feel like I am?
I try to cling to my faith in God, but sometimes I;m even too tired and/or discouraged to read the Bible or pray or be around others of faith. I don't even like so much going to church now because I start getting the panicky, short of breath crap during worship, and that's ALL I can focus on.
I hate this disease!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Roy, I've always felt it was like fighting a war. I've been determined I am the one that's going to win that war.
That must be why I choose the signature I use. I will not give up the fight. I will not lose this war. Sometimes I even image what the bad guys are saying to me. They are fighters too. So am I.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
bettyg
Unregistered
posted
mari, WOW, thank you for sharing your very powerful story of being gifted with brains to graduate early from HS/college, etc. and "living the good life".
then lyme hits you and the LOSS OF EVERYTHING!!
i'm glad you showed what you do enjoy now adays!
for those of us like me who are still BLESSED WITH EVERYTHING that you have lost; WE COUNT OUR BLESSINGS and don't take them for granted.
my 3 siblings refuse to acknowledge my lyme, etc. and NO MORAL SUPPORT.
thankfully, my hubbie of 34.5 years has LOVED me all these years as he's NEVER known me healthy. he's there to listen to me complaining, etc. he doesn't understand everything ... but he LISTENS!
mari, thanks for sharing your inner-most story of your downwards, spiraling life. best wishes, and you HAVE US, LYME FAMILY!!! unconditional love here baby...
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[confused]](graemlins/confused.gif)
![[Big Grin]](biggrin.gif)
![[bow]](graemlins/bow.gif)
![[bonk]](graemlins/bonk.gif)
![[dizzy]](graemlins/dizzy.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic