been having an extra tough time for awhile lately. not just with Lyme and co but husband lost his job a couple months ago and has been in an awful mood (understandably so).
I am just so very very down and depressed and feel like I have all of the energy sucked out of me.
but on my real bad days it is harder to take than my normal bad days. I am trying to be there for my two kids, do my best to take care of my ailing failing (84 yrs old)- hubby helps which I am so so thankful for.
I will get every little bit of strength I have to go to my son's rooms and play with them on their beds or they come to my room.
but I feel horrible that I can't be there for them as much as they need me. My oldest has been diagnosed with Lyme and his health isn't the best. He has started treatment but not by a so-so LLMD. We are on a wait list for the great LLMD.
My youngest probably has it to because we suspect I gave it to congenitally...or at least that is what we suspect.
we had many of the same bands on the western blot..but my children are young and don't understand why Mommy is sick all the time. they want me to do things with them and not a babysitter, or a friend, or Daddy most of the time lately.
they remember when I use to due so many active things with them like parks, water slides, museums, playing with the dogs, chasing in the house, etc.
I just lie in bed now and they come and see me here. I have tried to be creative and sometimes it works and other times not so much. I pray that they will learn to have Christ's heart and compassion
and allow themselves to grieve for the time we can't have now running around but celebrate a different quality time reading a book if I am feeling up to it and not in too much pain. Some days I just can't even read or book or hardly move.
and those days are my darkest where I,just cry out to God because I feel so alone and ask Him to help all of us who are sufferring. And I grieve the moments I am missing with our precious boys.
lately while it's been hot I just can't stand very long and our air is on. my depression is worse and I am super dizzy.
I have written down and searched for everything from natural to RX meds from over the past 6 mos to help.
just feeling down. hate this disease and how it hurts so many people. My severe depression may be a long herx because I am having the muscle twitches,
needles in the bottom of my feet, extreme fatigue, major brain fog, word slurring and finding etc. BTW I am on IV Primaxin
this may be a completely hysterical question but is there an insurance company that is "Lyme friendly"?
I know- it is a crazy question but I thought what the heck, might as well ask since we are shopping for one right now. Our Cigna plan ends in just a couple weeks.
I hope some of this made sense and it isn't too confusing and choppy. did I mention how much I hate this disease..I really hate this disease...and pray for a cure
and pray for someone to clunk the IDSA fellows over the head with a good ol' pan. ...maybe it will knock some sense into them.
but I am afraid they won't get "it" unti someone in,their family or they get "it"- aka"Lyme Disease and Co". and even then some may be too prideful and stubborn too admit their wrongs.
thanks ahead of time and hope you all are well! Happy Father's Day to you Dads!
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I'm sorry you're struggling. It does sound like you are herxing, which is good news for the long run, if temporarily crappy.
You and your boys can recover. And when you are well, everyone will be so focused on the new fun reality that nobody will think about how it used to be. Trauma does teach us to live in the moment and appreciate the good.
I have noticed that a quality of Lyme/Babesia depression is the inability to see that life will ever get better. That is the disease talking. Life does get better.
I've seen many families taken down by Lyme. Yes, the stress is insane. And the worry. And the boredom. You just have to keep treating to move forward. Health returns.
You will have MANY years of family fun to look forward to when you are through the worst of it.
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
As a mom I know how hard it is to be sick and want to be "normal".
I had pelvic problems and surgeries whe my kids were young. The kids wanted the old mommy back. Then came Lyme and my youngest had to take care of me.
I think if kids don't ever have any challenges or disappointments ( the family is either very lucky or they lie) they won't be prepared for their lives as adults.
My kids were loved, fed, clothed and I did the best I could. You are doing the best you can. God can be working in ways you don't see.
It does get better. Give yourself credit for the time spent with your boys. Gentle hugs.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
posted
I so agree with everyone - my kids and I have lyme & co, and so does my husband.
Every day is a struggle for me too - handling medication schedules, managing the kids, cooking, fighting with my health insurance company.
Just lost my job recently too and I was the sole wage earner.
My kids also ask me to do things with them and I frequently have to say "mommy doesn't feel well enough."
My husband is just restarting treatment with a great llmd, so I have high hopes - but in the meantime, I've suffered with over 7 years of his irritable behavior.
Our lyme counselor (that's all she does - lyme families) keeps reminding me that it's the lyme and not him, but when you're in the thick of being blamed for everything, it's difficult to keep that in mind.
It just adds so much stress to our lives having to deal with his daily antics.
The counselor keeps reminding him to stop playing the "blame game" and just try to be cooperative, but even when I point out when he is blaming, he gets annoyed and insists that being polite and indirect (and not blaming) is not effective in getting things accomplished in the house.
I tried to tell him that this is how nice people talk to each other, but he didn't get it.
Thank heavens for my kids - our struggles have brought me even closer to them and we encourage each other on a daily basis.
Oh well, hang in there. Thanks for letting me vent.
Posts: 348 | From NJ | Registered: Sep 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
thank you everyone for your thoughts and support. I had a really bad herx lately am am thankful to be on this end of it.
Bitten in Bergen it must be extremely difficult with your stressful situation to have more stress added to it- Can your counselor help talk to your husband about it? And how he words things to you or acts towards you?
I have to keep myself in check and fail terribly at times, but when I realize how I sounded or hurt him, or what type of an example I was being in front of my children Lyme or not...I need to go into another room and cry, yell, anything whatever I am feeling and then address the issues that need to be taken care of.
it's great you found a Lyme counselor and I wish you the best with the LLMD appt. that is coming up.
this past herx was a doozy and I honestly didn't know how my body could handle going through it- and I let up on my meds too. the pain was excrusciating and I felt like I was coming out of my skin, it's really hard to explain, kind of like restless lake syndrome but my whole body. I couldn't walk, talk, or do anything that required normal everyday functioning very well...
except using the restroom and just getting there was a triumph and then I would crawl back to bed. praise God that is over and hopefully over forever, but I don't want to kid myself.
I was so grateful my young boys were asleep for the worse part of it when my husband my helping me. and the next day I couldn't believe that I woke up to use the restroom and laid down again and slept till 10 pm that night. Herxing puts out body through so much intensity pushing our limits but praise God I am still here:) and will keep fighting this disabling disease for as long as I can.
thank you all for your encouragement. I really needed it. Keep taking care of yourselves!
Posts: 167 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
| IP: Logged |
I hope he can be more understanding; but I also know that is much easier said than done.
I ended up finding out that my liver counts were through the roof- so I had to stop my IV and some other meds. I think some of the ovals in combination with my IV was too much for my body.
My LLMD actually wasn't the one who wanted me on so many at once- I thought from reading on the boards and talking with him about it, we could give it a try. Well, I certainly don't want liver failure and didn't know how hard some of these orals can be on you.
praying that my counts go down so I can get back on treatment again. It's my own fault...I was getting anxious and it obviously didn't work in my case... slow and steady wins the race- I need to have that printed and posted all over my house.
I will also,have to try the Alka Seltzer plus and other remedies- I haven't seen the alkaline seltzer gold before but will look for it. I am able to take it as long as it doesn't have acetimophin - Tylenol (sp?) in it.
Posts: 167 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
| IP: Logged |
posted
Hang in there. My nutritionist had me using T.A.P.S. for liver support (it's available at Amazon and other health stores)- I've never had a problem.
But that happened to my husband and he was off abx for more than a month.
He's finally back on a protocol with the new doctor, but it's too early to see results yet. Unfortunately, he's still his nasty self, even after the lyme counselor gave him a whole bunch of examples of how to talk and how not to talk.
I almost left the house for the day because I just didn't want to deal with him. At least he went outside to fix some things.
One more thing - binders are very helpful for herxing too, since they "mop up" the toxins - just take them 2 hours away from abx or probiotics. My llmd has me take the binder before bedtime.
Our llmd has us using Takesumi Supreme for our binder. It's available online.
Posts: 348 | From NJ | Registered: Sep 2011
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Anissa, just came across your post here and wondering how you are doing??
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lisa,
Anissa's last post was 06 September, 2014. She's likely not around here any more. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
you never know. some people lurk forever
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| 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!
![[Smile]](smile.gif)
...maybe it will knock some sense into them. 
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic