Additionally, my children are having all kinds of health and behavioral problems (we are now in the process of testing them for lyme as well). I began to focus on how I feel llike such a poor mother, wife, friend and daughter.

I had been working with a therapist who I thought understood what I was going through. As it turned out, she was just another dr. who doesn't understand the lyme dynamics, especially regarding herxing cycles and depression. Except this was more damaging because I put my faith in her to help me with all of craziness that goes with having lyme.

When I became very depressed last week, she said, "what are you doing - your husband has to work" and that I should check into a hospital. She told me that she needed to meet with her that next day. I felt like I had been reprimanded by her and suddenly I became angry because I felt like she was protecting my husband over my well-being.

She saw my husband as the calm, focused, agreeable and pleasing participant and viewed me as the irrational, forgetful, unreliable (missed one appt. because I forgot) "hysterical" participant because I was the one on the couch crying for help in the past year.

I finally let my anger come up and my therapist thought it was inappropriate. What? Isn't that part of her job - to help me process the feelings that come up with having a chronic illness?

I was asking for my husband's help and she kept saying well, "he has to work and you need to stop being so demanding or he will leave you" Oh My G--! I walked out of her office.

I refreshed my desire to leave this planet in that moment. I seriously considered it and suddently felt like I got a sign from above. I began to pray and realized that God has me right where I am supposed to be. I don't like it one bit. Our existence (especially for those with chronic lyme for years) is so challenging. People just don't understand the pain that we are in.

Again, I put my faith in a dr. who then viewed me as a headcase. And, I know this will sound absolutely crazy, but I definately believe it based on her behavior and some of her remarks - I believe she started having some attraction towards my husband.

Meanwhile she wasn't able to look at our situation clearly and I didn't see it sooner because I have been so wimpy, sobby and foggy. I know that she would say that it is just paranoia. Instead of trying to really understand my disease and all its bizarre nuances, she sat back and started making incorrect assumptions that actually did more damage.

I never questioned her methods because of my fog and would not have questioned any of it because she was in the position of power as my therapist.

I still feel so vulnerable with this disease, but this experience, along with all of the other debasing experiences with drs. has given me more strength, resoluteness, determination, resolve, perseverance, earnestsness, backbone, fortitude, grit and doggedness...at least for today.

As you get better, and you will, you will become much stronger and determined and better able to advocate for yourself. It can be surprising to find your inner "self" and strength in the process.

It's in major crisis that you find your true friends, and yes it can be disappointing to find that your family can be part of this group, but boy does it feel good when I can speak up for myself and don't care if they want to see or speak to me again.

I have always been an independent person and I plan on remaining that way, and "always" helped others, even to the detriment of my health. Now I help out, but not to degree that I did. Take care, we all understand what you are going through.

Corinne

[This message has been edited by Corinne E (edited 23 January 2005).]

Don't give up hope.

I know where you're coming from, as do many here.

We are all Lyme pioneers.

We are the first ones to break new ground.

Many lyme patients after us will have an easier time,..... because of all the suffering we are doing.

I know that doesn't make it easier,.... but at least it gives us a purpose.

The future lymies are relying on us....

So good job standing tall! Keep it up...

daniella

I congratulate your courage in walking out on that therapist. Her behaviour was dreadful. I think she needs some therapy. You deserve better.

It seems the only people who really understand us are other Lymies and people who have coped with other disabling illnesses. I find other people want to believe I'm well because I look OK. I'll admit my symptoms are pretty bizarre and unpredictable but no one has the right to tell me how I should feel or tell me my disease doesn't make sense. Nor do they have the right to tell me how I should respond to my illness, whether I am right or wrong to be angry, frustrated or happy! Not just me of course, but any Lyme patient.

It's amazing how many people have questioned or criticized me because I've maintained a positive attitude throughout this ordeal. They think I should be more depressed or angry! I don't know why I feel the way I do it's just where I am today. Your therapist had no right to tell you you shouldn't be where you are or feeling what you are feeling.

When I first got sick and had Bell's Palsy there was one person who was super supportive and made me feel so much better. She was a friend who survived ovarian cancer. She frequently made me go out to eat(other people were embarrased to be seen with me with my lopsided face) brought me mushy foods and frozen drinks I could eat and understood that I was still myself, just facing some challenges. She helped me see the humor in my situation and above all helped me to adapt. She loaned me hats & scarfs to protect me from the sun so I could go outside. She helped me feel OK about myself.

She told me how she got through her cancer treatment by adapting and being good to herself. She also could not be around any negative people including her husband. The odds were bad but she survived.

In contrast another friend was horrified at how I looked and couldn't believe I went out in public. She cried when she saw me and said "don't worry, someday you'll be beautiful again". I was shocked and yelled back "I am beautiful, I'm just lopsided". She kept telling me I was too cheerful for someone in my situation. People like this don't help my recovery. They also seem to be avoiding me. Many people have vanished, unable to cope with the fact that I am still sick.

I've learned how important it is for me to believe in myself. I know my symptoms are real and walked out on the Drs' who didn't believe me. I'm dissapointed that certain people have not been supportive and have kind of abandoned me. It has also been interesting to see which people take the time to check in and see how I'm doing and don't doubt me.

I come to Lymenet everyday to stay centered. I know the people here do understand what I'm going through. In addition to learning about treatments, reading that other people have been through the same things I have makes me feel "normal" and supported.

I am sorry you are in such emotional pain.

Your therapist missed the mark and I apologize for that, for I am a menber of the counseling profession.

You have and are experiencing loss, we all are when we deal with Chronic Lyme and all it takes from us.

If you would like, you may email me.
[email protected]

Don't let your frustration,confusion and pain deceive you. Keep seeking truth.

Peace,
BJG

Paisley, you can get thru this..You are stronger than this Hell and keep telling yourself that..I know it is horrible from just dealing with my daughter..Makes me want to do crazy things and I don't think I have lyme.

Like Hats says, look for some postive influences and stick with them..Thank God, I have some wonderful friends that never judge or criticize,they are just always there being supportive..Last week, 3 of them took turns with dinners for us..Another baked a great cake..I will never be able to repay them but I love them more every day for the way they are there for me..

Another one is a nurse and she is here in 3 minutes when I need her..

And my daughter's psychologist, has become a family friend so there are some good ones out there..However, at first she came along screaming..I had to get her up to speed and now she is ready to take classes in neurotoxins. She is definitely out of the box and someday will be one of the great ones..

Your inner strength is what will make or break you. Build it up and it will never let you down! Focusing on the good [I know it's hard to find sometimes.] and believing God will help you if you ask will bring you through this.

Find two things to be grateful for everyday and focus on that.

Keep a journal of your feelings....let 'em out! GRRRR!!!

Take care. We love you.

I'm so sorry for everything you are going through, this disease really stinks. I have felt vulnerable too, dealing with what this disease does to a person is very hard. I guess somehow we will all get through it.

I dont' have any good advise, but you will all be in my prayers.

God bless - he does see all and know our hearts. I'm no holy roller, but I know that we'll be ok again. It's hard so many times, but eventually we have to see light again. I know the pain. My 2 sisters, neice and son have lyme and all devastated by it in some form or another.

I layed in bed for two days comparing myself to that dressser. I cannot tolerate, or hold much without wigging out. I am old, beat-up looking like it. there were cleaning fluids and a rag on it that represented when I used to clean. It is worthless, I would have trouble giving it away with it's worn out style. "I", Cathy, was a piece of wood for two days that in my opinion needed to be put out of its misery and be burned.

I started closely examining my veins in my wrists relizing how easy I could see them, I had just gotten my 90 day supply of pain medication. Boy I thought and thought and thought, and cryed and cryed and cryed----------

Then something happened that made me realize I needed a focus, something to hold on to to get better, because mentally sister with these thoughts I am not in the frame of mind needed for healing.

I used to be of great faith, prayed everyday, read the bible, those little daily thought books etc--just to keep me going--you see I have been ill for 20+ years now , had several surgeries, and have been through the wringer with docs all over the country since the early eighties carrying over 12 diagnosis' until diagnosed with late stage chronic lyme in feb 2004. WELL I JUST SAID OUT LOUD (rather shouted, screamed crying my guts out) TO KNOW ONE IN PARTICULAR-mind you no one was home---IF anything greater than me exist give me a sign!!!!!!!!!!anything please!!!!!!!!!!!!!!

No burning bush, but later that day my teenage daughter who just turned 16 has been very troubled, she recently quit the swin team at school to help take care of me because my husband works-therfore he is. He does absolutely nothing around here but leave his dirty laundry on the floor and his plates where he has eaten whether it be the bedroom or the livingroom--another story entirely---

Condensed version of my childhood, mom had MS-died at 39 when I was 17. Dad schizophrenic uncomplient to meds, alcholic grandfather. I married at 15, pregnant, had miscarriage and was on my own since then.

I have been a caretaker all my life and did not want that life for my child and there she was in front of my eyes living it. I nearly died when she told me, even though I knew why, that she'" .....quit the swim team because she could not live with herself knowing that I had been in bed sleeping all day, had not eaten and probably have not drinkin' anything and my husband would come home and change clothes, put on the tv and not even ask if there was anything he could get me etc--I went days without showers because I was afraid to stand up too long alone=--I was that weak-- because I have been WAY out of it since Christmas. Stopped IV abx 12/21 and have slept just about 24/7 until a few days ago.

THE DAY HER AND I TALKED REALLY TALKED FOR 2 HOURS AND CRIED TOGETHER. I LET HER KNOW I DID NOT WANT THIS LIFE FOR HER, I WANT OUT AND AWAY FROM HER DAD AS MUCH AS SHE DOES-BUT RIGHT NOW IT IS NOT IN THE CARDS UNTIL "I GET BETTER"--that moment it dawned on me that I must participate in my recovery, get stronger physically, mentally and spiritually because I have a kid who is a honor student in an IB school who wants to be a "horse doc' and has since she was 4 and she told me' "she did not think that her dreams were going to come true, her grades were falling..." I really looked into this kids eyes and saw the spark was gone, she looked run down from doing the shopping, the cooking , the cleaning and taking care of me while trying to keep her head above water in school. This is a good teenager-no drugs, no sex--got a mouth on her and loves hip hop and thinks she is black--LOL--but a great kid that I love deeply.

I also have a son who is 10 will be 11 next month--he has the same sullen look.

You see my marriage is not good, has not been for a long time and I have not been able to leave due to the fact he pays for my medical care, I am unemployable at this time but of course SSI does not see it that way--have an attorney and fighting--I cannot support my kids, pack, move and live on nothing. I have NO FAMILY LEFT-ALL DEAD-He is not abusive so running to a shelter is out of the question--he is neglectful and if he wants to be extreemely condesending. he has no idea what support means other than money, he suffers from depression and wont do a whole lot about it. He complies for a while takes his meds I get the good guy back then he decides his meds are not working and the jerk comes back. Until recently he was a traveling x-ray tech which kept him away up to 6 months at a time--we did fine then--this last year is the first year we have lived together as a family in a very long time--he traveled for 6 years.--it has been rough

LONG STORY SHORT--I FOUND SOMETHING TO FOCUS ON OTHER THAN MYSELF, MY PAIN, MY ILLNESS, MY ELEVATED LIVER ENZYMES ETC ETC ETC.

I am not sure I will this positive every day, but I will not let another day go by without looking into my kids eyes to keep me going. I am an ultrasound technologist by trade and can make a darn good living even part time if that what is painted ahead of me--or I will win my pening law suit against UMUM-another long story- and SSI will see things my way.

All I know is my entire family needs healing from both my husband and I being ill.

I hope you find a better therapist--they are hard to find. Mine is Sally Duffy and she does have a web site--www.drsallyduffy.com with some helpful stuff on it. She is a medical psychologist and only treats chronically ill patients. I am blessed to have her.

I have no friends in charlotte--if you have friends left--lean on them or family--don't let the resentment, hurt, confusion and utter clusterf*** that this disease can make out of your life stay inside--talk about it, keep a journal do something to get it out of you.

I am also having eyesight problems, hense I am not sure were my career is going with ultrasound-this was a new career that started in 1999-since then I have had 5 surgeries and lyme treatment-still have to pass my boards inorder to even practice in the next 60 days--another long story.

[B]I haven't logged on for a while because I kept spiraling down in the last few weeks. I began to feel more and more idle, powerless, ineffective and the most recent symptom that I am finally acknowledging is that I am losing my eyesight. I began to wonder "How much do I have to give up for this disease?"

Additionally, my children are having all kinds of health and behavioral problems (we are now in the process of testing them for lyme as well). I began to focus on how I feel llike such a poor mother, wife, friend and daughter. I KNOW HOW THIS FEELS AND IT STINKS.

I had been working with a therapist who I thought understood what I was going through. As it turned out, she was just another dr. who doesn't understand the lyme dynamics, especially regarding herxing cycles and depression. Except this was more damaging because I put my faith in her to help me with all of craziness that goes with having lyme.

When I became very depressed last week, she said, "what are you doing - your husband has to work" and that I should check into a hospital. She told me that she needed to meet with her that next day. I felt like I had been reprimanded by her and suddenly I became angry because I felt like she was protecting my husband over my well-being.--YOU NEED TO FIND SOMEONE WHO IS NOT GOING TO TAKE SIDES LIKE THAT-I AM NOT SURE HOW MUCH YOUR HUSBAND DOES FOR YOU, AS STATED ABOVE--I HAVE BEEN ON MY OWN-I TAKE MYSELF TO MY APPOINTMENTS, CARE FOR MYSELF--NO CHOICE HERE.

She saw my husband as the calm, focused, agreeable and pleasing participant and viewed me as the irrational, forgetful, unreliable (missed one appt. because I forgot) "hysterical" participant because I was the one on the couch crying for help in the past year.

I finally let my anger come up and my therapist thought it was inappropriate. What? Isn't that part of her job - to help me process the feelings that come up with having a chronic illness? YES IT IS PART OF HER JOB!!!!!!!!!!!

I was asking for my husband's help and she kept saying well, "he has to work and you need to stop being so demanding or he will leave you" Oh My G--! I walked out of her office. GOOD FOR YOU--DID YOU FIRE HER AS WELL?

I refreshed my desire to leave this planet in that moment. I seriously considered it and suddently felt like I got a sign from above. I began to pray and realized that God has me right where I am supposed to be. I don't like it one bit. Our existence (especially for those with chronic lyme for years) is so challenging. People just don't understand the pain that we are in.--THIS IS ALL TOO TRUE, MY KIDS LAUGH AT ME WHEN I TALK WITH ONE WOMAN I MET AT MY DOCTORS OFFICE ON THE PHONE--I ALWAYS SAY TO HER IT IS SO NICE TO SPEAK WITH SOMEONE WHO SPEAKS LYME--I ALSO HAVE HAD IT FOR YEARS, NEURO PROBS--SYSTEMIC PROBLEMS ACCROSS THE BOARD AND SUFFER FROM CHRONIC PAIN.

Again, I put my faith in a dr. who then viewed me as a headcase. And, I know this will sound absolutely crazy, but I definately believe it based on her behavior and some of her remarks - I believe she started having some attraction towards my husband.

Meanwhile she wasn't able to look at our situation clearly and I didn't see it sooner because I have been so wimpy, sobby and foggy. I know that she would say that it is just paranoia. Instead of trying to really understand my disease and all its bizarre nuances, she sat back and started making incorrect assumptions that actually did more damage.

I never questioned her methods because of my fog and would not have questioned any of it because she was in the position of power as my therapist.

I still feel so vulnerable with this disease, but this experience, along with all of the other debasing experiences with drs. has given me more strength, resoluteness, determination, resolve, perseverance, earnestsness, backbone, fortitude, grit and doggedness...at least for today. GOOD FOR YOU!

I know this has been a bit long--I am a lonely person and not too proud to say it--LOL-I just felt compelled to share my story of recent empowerment with you and whoever else will stick with it long enough to read.

God bless, may you get stronger everyday. Remember you are doing your best with what you got where you are at!!

In friendship,

Cathy

I am a retired mental health professional, and am embarassed about the incompetence in the field.

I wanted you to know that there are gifted, wonderful therapists out there. I was guided by God to one who I saw for over a year. Oddly enough, I picked her name out of my provider directory.

She turned out to be a specialist in treating people with chronic illness, and she and her family had Lyme for many years. Talk about divine intervention in finding her! She saved my life, got me from lying in bed crying and feeling sorry for myself to getting out even a little bit every day.

When she told me that she had had to sit on each step for half hr until she could make it downstairs, I memorized that image and take it with me even today for courage.

We all know when we need help, and you instinctively knew that you needed to see a therapist. Please try to find another one, and specifically ask if the person has had any experience with chronic illness counselling.

Feel free to email me.