The last vestiges of chronic Lyme disease

I haven't gotton out of bed since Friday. Friday, btw, I had my 2nd colonoscopy and was informed that I have extra large internal hemmerhoids.

I actually asked my husband last week if he would "forgive me" if I just "let go".

What do you mean "let go?".... "Stopping all the meds?".

"No, putting an end to all the meds forever. Putting an end to all of this forever."

Now he wants to join me in my Pshrink appt. tomorrow. I told him yes at first.... but now I say "No." He's staying home.

My LLDR won't fill out any more LTD forms for me (or anyone else).... which means if I can't convince a doctor (AND REAL F'ING SOON) that I have LD, I lose all of my benefits (LTD, medical, dental, life, AD&D, etc.)... and all of my husband's benefits. He's 61, I'm 45. No one is going to insure us.

My co-horts at my previously prestiges job (which, btw now takes 3 people to accomplish) are not going to bat for me anymore. They are very sympathetic, they believe me.... they are just not going to push any insurance companies into anything. The Co's. are probably "clients". I know how the game works.

Everything hurts. I am so fatigued, yet have slept so much, I'm in this "middle" existence. My husband has had enough and all I do is yell and scream at him.... the man who made me "homemade" jello for 2 straight days! Finally he stormed out saying "I don't deserve this." I apologized... but he is right, he doesn't deserve any of this.

I hate my Psychologist, but need her to help play the "insurance game". I have a Pshrink, an OB/GYN and a 'maybe' new Primary Care Physician... all appointsments for the next 2 weeks. Then I have Dr. C.... who last time told me I was not responding to any of the standard treatments..... but who won't touch a 2 page disability form so that I can keep on going. I know why he's doing this. It's me or his license and he's close to retirement. If I stick around, I will have to find the courage that Dr. C won't use or doesn't have. I would still recommend him. He is a great physician, but I've outgrown the BS with the forms. It will be my last appointment with him.

I am going to try and return to Dr. Y for LD tx and if that doesn't work, I'm going to push my PCP.... and all of this is going to take weeks. Weeks of energy, time, BS, to be topped off with 2-4 weeks of carpal tunnel from filling out all the forms... and running around for MRI's, MRA's, CT Scans, EKG's, etc.

Thanks for letting me unload. I know I've had it pretty easy (disability wise) for several years.... and now, when I'm at my lowest, NOW they want me to fight.

I end this by saying, I'm watching Housewives of New Jersey...... scraping the bottom of the barrell here.

Try to take one day at a time, or if need be one hour at a time, or if need be one minute at a time. Try just the slightest thing that may help, like a epsom salt bath, lemon water, a new breathing techique, a nap, something, anything that may help. Are you on any anti-anxiety meds. Xanax really helps me calm down and get to the next step. I am now apparently on a new drug for neuropathy pain that turns out to be an antidepressant and it helps, my mind is not racing and thinging negatively all the time so sometimes just the slightest change could help drastically. I have been there when the world is against you and you are sick of tired of fighting. it is worth it, keep posting, someone will have an idea that really works.

I am sincerely sorry about how you feel. All of us are not as sick as you are, but many of us have found ourselves in the same emotional condition. Almost daily I imagine ending it all --- for me, it is an unbearable mental state that comes on that wants me to do this. But as soon as I look around, wondering who could be trusted to take care of my dogs, or who even would, and then I think of how deeply this would hurt my parents and my kids, I know this is not what I want.

I've also had some stuff show on my xrays that scare me to death. The point here is NOT that I want to tell you some of us have it just as bad --- the point is, that when these things are scaring me, I then know that I do NOT want to die yet. I want to get well and DO SOMETHING, even tho it may not be much.

We will all pray for you. Please pray for mercy. Please pray for strength. We are with you and we are praying and pulling for you. Pray for miracles.

As for your husband, we are sorry about that too. But most of us experience this situation also. People who do not feel like we do just don't understand. After awhile it wears on them and the sympathy runs out. I don't believe they are bad or really don't love us.

Often, it seems that those suffering from cancer or other deadly or chronic diseases are able to hold up their attitudes and spirits better than we can.

For me, it really does seem that part of this disease is to bring us down to our bottoms. I believe it is a way the disease can succeed and continue. And so it battles with our spirits and hope and emotions.

I hope that the darkest feelings you had yesterday have passed, even if only for awhile. Please keep reminding yourself that those feelings are a part of this disease, themselves. You are in a very bad predicament right now, but I believe that if you can scrimp up ANY strength, prayer, and an ounce of hope and belief, that you can move beyond this worst and unbearable position.

Please hold on -- this hasn't gotten you yet. Do not allow Lyme to win -- that is it's purpose. I am not going to tell you to adjust your attitude, jump up and fight, because I know that you do not have it in you right now. I know this because I go there almost daily and it is something you just can't do. But you can push yourself to take one baby step now and then. Forcing myself to hang out w/ my kids, if only for going out for a burger or watching a movie they think I will like takes me out of the worst zone now and then.

Do not ever let yourself forget that your feelings and your situation are TEMPORARY. It will not always be this dark and scary and unbearable -- much of it will pass for awhile, even tho it will come back sometime for awhile. But you MUST believe this is temporary. Please do not hurt your husband and family by throwing in the towel.

Even tho I have experienced the depths of despair, I recognize that these feelings are physically caused. And at thes times, the depression and hopelessness are unbearble. My entire mind becomes unbearable and I realize that I am not thinking and feeling thoughts and feelings that are really mine. This is very scary, because Im coming to understand that many people who take their lives not only felt low, but their minds have been scrambled and have not been their own. I've experienced this and it scares me that I may think about something I don't want to think about and that it could cause me to do something I really don't want to do.

It certainly sounds like your husband loves you very much. Still, he is a human, he is a man. There are limits to his understanding and his patience. As much as I wish I also had someone to support me and help me fight this, I also understand that it nearly impossible for someone to handle for years.

Maybe you should try to give him a bit of a break. Try very hard to smile. If you are down in your depths and can't climb out, try to battle this on your own for just a little bit. He may appreciate the break, yet will still see that you are hurting and in pain. He doesn't know what to do and I think this is very common for partners of those who are suffering.

Please continue to pray and to hold on and to never forget that this is temporary.

Here's something a little strange: I hate to sound like a drug pusher and I fully understand that each person is different. I have been on antidepressants for years. They have helped the constant Lyme pain that feels like inflammation, throbbing, aching and sore, but not my mental stuff.

But sometimes, not always, when I go into my black hole (God, it is ugly and NO ONE will listen to it anymore), even tho this is not anxiety, often a xanax or 1 1/2 will ease this -- kind of mellowing out my mind and those feelings of desperation.

I don't know what to say about your disability. Is there ANY way you and your husband can find a way to live off his income for awhile longer? As Dave Ramsey says, 'sell some stuff' and stop spending.

Please keep us posted. If there is one single statement in here that helps you even a little, then that is a good sign.

Becky

I miss you 1bitten!!! It's not the same without you.

Thanks everyone. I think the deep depression was brought on by my recent GI problems requiring 2 hospitalizations and more narcotics than I'm used to.... and then getting my Hartford LTD "renewal" forms in the mail at the same time. What scares me the most is that I never know what the 'last straw' is going to be.

 Jelaine,  It is so good to see you posting.  Better days ARE ahead and staying connected with people who care and share, I've found to be an encouragement.  I'm sure you have too.

You sound so much like what has been going on in our family. Our son has had lyme for 17 years and told me about 8 months ago he was ready to end it all and is so tired of suffering. He has a beautiful family and this was such a shock. When he got diagnosed with lyme back in 1993, he was put on Doxy for 8 months until we learned how badly they can hurt you if taken for a long period of time. He changed to good diet and supplements and did ok with periodic crisis every so often. about 6 weeks ago he started on a very high dose of a very excellent colloidal silver. Eventually all the pains in his feet and wrists etc. disappeared. However to get the remainder of the lyme totally out he is starting to use a coil/rife machine.

Denise,

I know. I just looked it up too. I am very, very disturbed by this. My heart is in my stomach. I feel terrible too. I literally have tears in my eyes right now.

She was seeing the same doctor I was seeing in Florida. I know it was a long battle for her. My God, I know her family must be suffering right now. What a good heart she had. She always made me laugh even when she was feeling bad.

This is just so incredibly sad and scarey. I continue to question my treatment and pray that the drugs don't get the best of me before the disease does, or vice versa. Staying strong is just so much easier said than done. I thank god every day for this site because it has really been so so much help in tough times. God Bless jelainep.

I felt like I had been kicked in the gut when I read this post of hers, wishing I had done something.

This comes only a few days later of learning of a couple's suicide due to losing their home, jobs and health to lyme.

It's all too much. May God grant us mercy.