The last vestiges of chronic Lyme disease

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JELAINEP
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Date Joined Sep 2007
Total Posts : 2017
   Posted 5/31/2010 5:13 PM (GMT -6)   
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. rolleyes
A small group of committed citizens can change the world-it's the only thing that ever has.-M. Meade


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/31/2010 5:42 PM (GMT -6)   
Jelaine,

I am so sorry that you are feeling so down. I wish that there was something else that I could do besides type a message. I know exactly how you feel because I have been where you are many, many times. Please don't give up. Like you said, you are at your lowest point right now and that's probably where your feelings are coming from. I know it's hard. Trust me, I know but it's not worth giving up. Your husband is just reacting to everything that has been going on. It's not you he is reacting to. I was in the same situtaion. My husband was doing everything and even though he never said that he had enough, I could see it in his eyes. We have to fight. It is too easy to just give up. Have you tried a natural protocol yet? Maybe your body just needs a break from all of the meds.

I am here if you need to talk. Bug hugs to you hun!
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 5/31/2010 6:39 PM (GMT -6)   
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.

1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 6/1/2010 5:50 AM (GMT -6)   

Jennifer-

I know you feel lower than dog poop, both physically and emotionally.

But, is there any way you could fly to the NE to see another well known, well versed Lyme Dr.?

 

 


 
 


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/1/2010 6:41 AM (GMT -6)   
Jelaine, 
 
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


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 6/1/2010 6:48:24 AM (GMT-6)


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 6/1/2010 12:16 PM (GMT -6)   
Dearest, dearest Jelaine,
 
Your words touched me in a way I can not describe..  Perhaps because I felt what you are feeling years ago and I can never forget those dark, dark feelings and thoughts..  I felt like I was in the deepest black hole and it felt like I could not get myself out of it..  I had really bad thoughts, I had lost hope, and one time Ticker called me at home because I thought I was over..  
 
I let my husband go, I wanted him to go because I was suffering so badly and didn't have a diagnosis and he was yelling at me all the time.   I couldn't take the stress between us anymore and I begged him to leave and find his own place which eventually he did.  I was angry at him because when he got Crohn's Disease I was there for him, taking off from work to take him to doctors, staying with him at the hospital but when I became sick, all he did was yell at me..   And that hurt so much.. 
 
Please hang in there..  I am guessing you don't believe in Dr. Jernigan's protocol and that's fine.  You need to follow your own path and I respect that.  
 
I believe you will find the "right" path for yourself and you will get better.. 
 
If you ever want to talk to me personally, I am here for you Jelaine..   You have my e-mail..   Darn, you can even call me!  I really do care about you and won't try to talk you into anything but share stories..  
 
Know that I am crying with you..  I can feel your pain.  
 
BIG BIG Hugs,
Denise


It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/1/2010 5:49 PM (GMT -6)   
I miss you 1bitten!!! It's not the same without you.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 6/1/2010 11:00 PM (GMT -6)   
JELAINEP,

My sentiments and heart for you are the same as the others who have shared.

I know it is so hard not to give up hope, but when we do lose hope, I believe in a very Big God, even All Mighty who calls Himself, "The God of All Hope". May He be all your hope today and everyday until that spark of hope is renewed in you again!

You are in my prayers,
Rhonda

PS: When I've found myself scraping the bottom of the barrel I realized the only way to look was up.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 6/3/2010 2:42 AM (GMT -6)   
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.
A small group of committed citizens can change the world-it's the only thing that ever has.-M. Meade


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 6/4/2010 6:24 AM (GMT -6)   
Hi Jelaine,
 
I'm glad you posted as I have been wondering how you were.  Of course any type of stress will make everything 100 times worse.    I'm sorry you are having GI problems, you most certainly don't need that and that just adds another layer to all your other problems.
 
Jelaine, you are a very strong person and you will get through this. 
 
I have been suffering from depression myself from menopause (oh, how I hate menopause!).  I finally decided I had enough of this suffering and I have an app't with a doctor that specializes in bio-identical hormone therapy.   I am really hoping that this will balance my hormones.
 
Hang in there and know that we are here for you.
 
Hugs,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 6/4/2010 9:22 AM (GMT -6)   
 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.

daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 6/4/2010 9:33 AM (GMT -6)   
Denise, I didn't realize how much you've been through and now with the hormone issue, so sorry. You are an amazing woman always helping others--posting important information, answering questions, PMs, etc. You have been a blessing to so many including my hubby and me.

Thank you!

allieann
Regular Member


Date Joined May 2010
Total Posts : 116
   Posted 6/8/2010 12:59 PM (GMT -6)   
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.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 7/21/2010 4:47 PM (GMT -6)   
This was her last post...  So very sad..  I really tried to reach out to her the best way I knew how..  I feel so bad...  I wish I could have helped her, I really do.. 
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/21/2010 4:53 PM (GMT -6)   
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.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 7/21/2010 4:54 PM (GMT -6)   
I am crying right now too.. 
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/21/2010 4:55 PM (GMT -6)   
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.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/21/2010 4:59 PM (GMT -6)   
I know I am a Moderator and I am supposed to be the strong one, but I have been there myself. This disease puts us there, that's why it is so important to have someone to talk to. Most of the time, our family doesn't understand what we are going through. These forums are a life saver sometimes. I just wish there was something more I could have done.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 7/21/2010 5:57 PM (GMT -6)   
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.

3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/21/2010 8:22 PM (GMT -6)   
I feel so sad...I have tears. People with Lyme disease should not have that much stress. The Illness is stress in it self. From what I read I can see many caring and loving people on this board. And your consideration is greatly appreciated, especially by me.

*Hugs to all*

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 7/21/2010 8:35 PM (GMT -6)   
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.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/21/2010 8:40 PM (GMT -6)   
Thank you for posting this, CG. Do you know what the cause of death was? Directly or indirectly attributed to Lyme?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

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