Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Man, I feel like a beaten puppy!
It looks like my IV meds will not get approved. If they do, it will probably only be for 28 days (yes, I posted that on the medical forum too). The funny thing is, I feel almost at peace with it!
I attended a prayer group meeting at our church last week. I knew then and there that I had to turn all this over to God. I cant keep up the battle-fighting with the dr's, fighting with the insurance. Will this or that cure it?? What if I try this? What if I dont do that? I had to give up and put God back in charge.
Im whipped and tired. A good mentor to me even told me that it was time that I let others do the praying for me. What a strange thing to say I thought at the time, but she is right. She said that sometimes a person comes to a point where they just cant do the prayers anymore and you have to put others in charge of it.
So ok, thats what I am doing. Im still praying, but letting others do more of the work for me. I have kids to take care of. I break into tears every single time I think about not being around to take care of them.
Today, I could hardly life my head off the pillow. I took my 2 year old to a friends house and let her take charge of her for a bit. I slept but I am still so out of it tonight. Im in tears even now.
I want to be strong again and raise my family. Thats why, I have to put this in Gods hands. I cant do it anymore.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Nancy,
I could have written that myself except for the kid part. Its 62 degrees here today....a true gift for january in PA. And here i sit after 4 days of improvement, back to square one. I keep thinking it is this or it is that, what duck should i call next.
But like you i think it is time to let God and my body take over from here.
One nite that i was up late....there was a story about the power of prayer....Dr said you cant measure it...there was a cancer survivor that was interviewed and she said she could not have done it without others.
Hang in there, you are in my thoughts. Rest if you can.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Nancy it just never ends does it. I feel the same way. I have been praying for months, friends have been praying for months. None of my or their prayers have been answered.
I just don't understand. I'm almost too tired to pray anymore.
I feel worse on a daily basis and don't even know what's wrong. I have a llmd appt. in Feb.
Like you, every time I think about life I cry and think I won't be there. I don't have any children but have a husband and pets. I cry when I think they may be without me.
I wish there was an answer. I guess putting it in God's hands is all we can do.
Patti
Posts: 340 | From Ohio | Registered: Oct 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
NaL, o Your post made me cry.
It is true that we get to pt where we need others to intercede when we are too physically and emotionally exhausted.
I am so glad to hear that you have support.
I have lyme and kids to take care of. I have gone round with IV idea, dr advised against IV as I have to take care of people here as I can.
I have done 10months oral with steady improvement. I couldn't tell I was improving for first 4 months at least, but in hindsight I was.
Perhaps this is a sign that for now the best course is carefully chosen orals.
I do remember you have tried IM, and also that you are sensitive to orals. Is that correct?
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
'm in bad shaape right now from surgery and can't write much-but want to let you know i couldn't get iv approved and did a few yrs of orals-i am not cured of course-vbut my fatigue has been gone for 5 yrs and my worst pain-in my feet has been gone. i raised 4 kids -the last two were babies when i got it and i didn't know it so i ended up giving it to one of them in breast milk. bottom line-it did affect my mothering-but they are all doing well. if it wasn't this i believe we wouldl have other challenges to deal with...and also important-not getting approved might even be a blessing...lots of people have serious problems with iv-i was with one of the #1 llmds and he prefers to use orals if possible to avoid the iv problems. maybe it's part of HIS plan...that you got turned down-when stuff like that happens i figure its my angels sending me messages. good luck.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hey, Nancy
I was sorry to hear about your bout with the insurance company.
I'm also only on oral abx -- at the recommendation of my LLMD. I had wanted to continue working (at a reduced capacity), and I was told it would be easier on my system and create less of a herx reaction if I tried orals to see how effective they would be.
I chart all of my symptoms on a daily basis and have since before I started taking abx in June. I still have days when I feel awful, but overall, I am definitely getting better.
It's a slow process (I was infected for 9 years before dx), but I am continuing to work and at least am out of bed each day.
I gave this to my Higher Power back in the spring. I felt like I was in a tunnel with no light, and I needed help. I definitely feel I've gotten that.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Personally, I didn't get any better while on IV (4.5 months) until I was started on orals.
My reg PCP ordered the IV, while I was not seeing an LLMD.
Then, I got with an LLMD and he ordered orals and oral combinations. Totally, I did a little more than 3 years on abx.
Don't beat yourself up if you cannot get IV approved, for plenty of former posters here have gotten a remission, cure or otherwise from only taking oral abx.
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
I do know - it takes all of your strength. When I first got this disease I felt like my spiritual life had been "cut off," as if that part of me was sick, too -- just no strength to be present to it. I just blindly sort of trusted in my faith... but I still have not yet *completely* recovered the spiritual strength I used to have.
It is the Lyme that does this.
Then I thought I had to say, Angels and Spirits and (fill in your deity of choice here), please carry me through this. And sometimes I didn't have the strength even to say it or feel it... but remember, the Creator knows our hearts and our needs. We *already* don't have to carry them by ourselves.
Also, I have done both IVs and Orals, and, while each person is totally different and I am not a Doctor, I have found my best help with the Orals.
So please don't give up or think that your treatment plan will go nowhere now!!.... in some strange way maybe it is the best thing for you (although we do not know what your Dr. intended, of course). Maybe you needed a less aggressive approach that I have found Oral abx to provide to me. (Granted that every person is different). Please stay hopeful, ok??!!
You are not alone. Let the strength flow into you when it comes, and trust that it will again when you cannot feel it.
(((hugs)))
Posts: 1066 | From East Coast | Registered: Dec 2000
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