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Old 07-07-2006, 07:52 PM   #1
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Down in the valley

I am so down in the valley. Herxing big time. As bad as in the beginning of treatment. Depressed and tired of this. Its been 19 yrs since I tested positive. Started retreating lyme and the Co's last fall when I found out I still was infected.

Its been 2 1/2 wks since the recent EM rash which is looking more like a bullseye as it fades. Still very visible. IF I have been reinfected, that probably explains the "valley". Can't think, would love to pour my heart out since you guys understand, but don't have the energy. So please read between the lines.

And on top of all of this, my insurance just dropped Jemsek Clinic from the in network so I will have to pay and hope insurance will reimburse me part. (I know I should be thankful I have insurance and I am, but...) I have appointment Monday.

I would appreciate a few extra prayers.....Marsha

Last edited by Pearlscale; 07-07-2006 at 07:53 PM.

 
Old 07-07-2006, 08:11 PM   #2
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Re: Down in the valley

Hi Marsha. I am very sorry you are feeling so bad. We do understand how never-ending it seems and how sick you are of being sick. You have every right to be tired of it. I am sorry that you may have been reinfected, but maybe that is why you are feeling so bad.

Having co-infections definitely complicates things. It will get better, I swear. Just remember that no matter what. This is being said by people who are walking the walk with you and know how severe the symptoms can be and how lonely it is going through it. Take things one moment at a time. You can get through the next moment.

Regarding the insurance, I know it is terrible to have to fight this battle too. I suggest finding out the name of the CEO of your company and writing him/her a letter. Explain that you need to see this specialist and you would like it to be covered as in-network. I would be surprised if you did not get an answer.

Hang in there okay? Extra prayers are on the way. Please keep posting on how you are doing.

 
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Old 07-08-2006, 08:07 PM   #3
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Re: Down in the valley

WW talks about you frequently. You are never far from her thoughts or prayers. I know she misses you a lot.

This disease is so isolating. It is impossible for people to understand how all this feels, how hard it is to hold on to hope. This is not a battle, it is a war.

But I am living with a woman who is beating this disease. Inch by inch. Every move forward is hard fought. It shouldn't have to be so hard.

You have been in this together from the start, and you are being held on to and thought of. Always know this.

DD

How is Larry holding up?

Last edited by dorkdad; 07-08-2006 at 08:13 PM.

 
Old 07-08-2006, 08:32 PM   #4
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Re: Down in the valley

Larry is my rock and I am blessed. I also know You are Jeannes rock. We both know how much we are blessed. I hope she is having alot of fun with the unicorn on her magical rides. I'm sure she gains as much helping the kids as they do. I go back to the dr Monday. I think I'm going to try a new sleeping med called rocerim. I did some research and thought maybe thats the one. If it works, I'll tell Jeanne.

Today has been rough just like all week. I was getting depressed and I knew it. Then this afternoon one of my customers I've known over several years came in and told me his wife had died of cancer in June. He was so lost. He was trying to maintain their watergarden but he said everything in it was dead or dying. He really touched me. I did help him figure out what his problems were with his pond and he called me back to tell me I was right.

It helps put things in prespective. I have a total of 4 other customers fighting cancer right now and in the past year, I have lost two to cancer.
My customers are all friends that I have become close to.

We all have our wars to win. or lose. I feel lyme has won the last battle but I am going to win the war. Maybe I'll know more when I go to Jemsek Clinic Monday. My EM rash after 2 1/2 weeks is starting to show a good bullseye. It probably will still be there for them to see.

Give Jeanne a big hug from me. Shes my buddy. Prayers......Marsha

 
Old 07-09-2006, 05:59 AM   #5
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Re: Down in the valley

Oh Marsha. Sorry to hear you're down in the valley.

I sure do understand. We all do.

I like your analogy. It is a valley. We have highs and lows. The lows can feel awfully long and dark.

You've been fighting this disease for quite a while. Then to deal with that blood clot and the blood thinners - managing this illness is like a full time job. No wonder you feel down. We all get down.

We don't know how long these lows last, a couple of hours or a couple of days. Its really tough to live, work, clean, talk, pay bills, change our clothes - when we are like this.

I know. On my bad days I lie here trying to go to sleep, teeth not brushed (gross!), clothes not changed, dirty dishes from the past few days on the floor next to me.

The sun will shine again.

I will sure send a whole lot of prayers your way. Hang in there. We're here with you.

 
Old 07-09-2006, 10:04 AM   #6
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Re: Down in the valley

Marsha

I'm so sorry you are so down. I hope that changes soon for you. The peaks and valleys are so typical of this disease. You will win the war.

I know sometimes I wonder what the future holds for me. I can't imagine living my life like this BUT then I realize NO ONE knows what their future holds and what battles they will face. I think everyone faces something at some point in their life. It is not up to us to pick our obstacles, that is done for us. Our only option is to choose how we will handle them.

I know it is not easy, and we are all here for you. Be gentle with yourself, and let us know how you do at the Dr on Monday.

Praying for you.............
Kim

 
Old 07-09-2006, 10:37 AM   #7
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Re: Down in the valley

Hello Marsha
IM so sorry you are having such discomfort, to share such along time with lyme is frightening,you will overcome it, you will win. You couldnt know much more about this blasted disease.
It doesnt stand a chance.
Sending you hugs
Jules xxxxxxxxxxxxxxxxxx

 
Old 07-09-2006, 05:59 PM   #8
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Re: Down in the valley

Hi Marsha,

Hey, look over to your right...there is my tent - I am down in the valley too these days...camping out right beside you. Come on over and sit on the log by the fire...we can have some virtual 'schmores' (sp?)

I know I am being goofy but I liked your analogy to the Valley.

Take care of yourself and I wish you easier days ahead.

NCgirl88

 
Old 07-09-2006, 06:00 PM   #9
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Re: Down in the valley

You and Jeanne are both amazing women. We will both be watching for Monday's report.

Hope the new sleep med will work for you.

DD

 
Old 07-09-2006, 06:07 PM   #10
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Re: Down in the valley

LymeGirl,

That realization hit me a couple of days ago too...the fact that while I feel I am living a nightmare at times that the reality that anyone's life can change on a dime in an instant somehow gave me some comfort.

I guess I realized that at least I feel I have been let in on some secret so I can make decisions that are best for my life and happiness in the moment and value each moment so much more then I once did.

NC

 
Old 07-09-2006, 06:19 PM   #11
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Re: Down in the valley

Still down in the valley. But it helps to remember the mountain top I was on for awhile.

And my 10 cm oval rash is fading into a good bullseye almost 3 wks.

Thanks all, I knew you would understand. Hope you all can keep up with my train of thought, it is definitely off track.

Prayers......Marsha

 
Old 07-10-2006, 07:37 AM   #12
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Re: Down in the valley

Pearlscale, I am pretty new to this Board so you don't know me. However, I still wanted to let you know that I have said a prayer for you for a complete recovery (or remission).

To good health. You are in my thoughts. SROCC20655

 
Old 07-10-2006, 06:09 PM   #13
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Re: Down in the valley

UPDATE
One PA (the same one I saw 2 wks ago came in when she found I was there today) and she is leaning more toward recent reinfection and increase in symptoms indicate that is more probable. Jemsek agreed two weeks ago that was possible. Saw 2nd PA (the one I was scheduled to see) Quest blood test didn't show lyme, but that was not surprising since I was on antibotics during this time. She said that the EM rash (still present but fading) could have been lyme saying, Hey I'm still here. No way to be sure. But the increase in symptoms definitely leave me with a few ???

I am to take a week off meds and then go back to Septra (which I had a strong reaction to) and try it again and continue the amox. I am to take carafate and aciphex to try and offset the chest problems/reflux?.

I am to try rocerem for sleep tonight. Have some samples. If it helps will have RX filled. (Jeanne I will let you know)

Still in the valley. Waiting for the mountaintop.

Prayers to all and still needed. Marsha

Last edited by Pearlscale; 07-10-2006 at 06:10 PM.

 
Old 07-11-2006, 10:38 AM   #14
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Re: Down in the valley

Hi PS
its good news that atleats the wheels are still turning and as long as thats happening it means at least we are on the move, wether up or done not sure but at least not broken down and left by the road side

I hope this brings you some long over due rest.

hey valleys are quiet nice relay they have lovely fising streams and wild life, your just camped to close to the grizzly bears dunny

seriousely though big hugs and much rest
Jules xxx

 
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