Please any advice appreciated

I am so, so sorry.

I'm really fed up with Yahoo; it keeps booting me out, so I'm going to post another Google email tonight.

Feel free to email me, as soon as I eat my Brussels sprouts, that is!

I have been in that place of despair many times. I too have had tons of bad luck, including two dogs with Lyme disease. I won't go into my laundry list right now.

I have also been suicidal, and I still have moments of despair, although not as deep and not as often, for now.

Are you herxing, by any chance? Herxing causes me to get much worse.

Also, are you being prescribed psychiatric meds? Most Lyme folks are on some kind of psychiatric medicine.

The only thing you can do is hope. The thing that keeps a suicidal person from suicide is that there might be a better future. You also need to keep your children in mind.

Do you have a cat or dog with whom you can snuggle in the bed at night?

Remember, it is better to be out of a bad relationship than in.

I will post my email when I finish eating.

Maybe you need a new Barbie doll dream house, like the one I just bought! :)

Margaret

I sent you an email....

A couple of my kids already are confirmed to have lyme.
Being in my thirties I feel the last of my youth is being taken from me. I'd bet my butt my dog has it too.

Found out today my 11 yr old has the double Mthfr mutation.

I'm not on psych meds other than klonopin for panic attacks.

The big thing is I've always maintained my sense of humor even in the most bizarre and stressful situations. That's who I am.
Over the past week I can't even contrive a chuckle, a smile, nothing..............

My relationship with my husband is in the crapper, one thing we always had even when things were hard was out intimacy was always phenomemenal. The past month even that has fizzled to nothing. He was my best friend, I feel like an island.

I cannot articulate the pain I'm in, deep in my soul. It goes beyond lyme, I feel like I am disappearing or have disappeared.

I feel nobody would want to be my friend, I was someone people gravitated towards. My perception of myself has gotten worse by the minute.

I ache to feel a part of something. I have a beautiful family and I feel so empty. I don't see away through this. I've never felt so low, and insignificant in my life.

My daughter told me she is sick of me being sick and she hates being around me. My husband says I'm not a supportive or encouraging partner. This is the opposite of what was ever said about me in the past. I was told everything is about me by my husband. In spite of feeling ill I try so hard everyday, to clean, feed people, takes kids to sporting events do groceries and I'm profoundly ill. I have late stage lyme and it's in my CNS, I have cardiac problems amongst many other things.

I'm spread so thin I can't please everyone right now.

Maine76 I'm so sorry that things are so difficult for you. It seems so unfair sometimes that if we had cancer people would probably understand and be really supportive. But not with this disease! My sister who used to be my best friend and the closest person in the world to me told me I was lazy and a hypochondriac. I worked 5 part time jobs when I was in graduate school with a 3.6 gpa but now I'm lazy. It was so painful. I eventually had to stop seeing her and we haven't spoken for almost 2 yrs. I haven't worked for 2 yrs and I really need to. It's really scary. Maybe its because we look ok that people don't believe we're really sick. I'm almost afraid to tell people that I think I have lyme. I'm just so tired of being judged. I can't imagine having a husband or children who need energy from me. I feel really challenged sometimes by having to take care of my pets and I really love them. You have to reduce the stress. Somehow your family's going to have to understand that you need them to help you. I've been taking 20 min walks in the morning to get sun and talk to god. I worked up from 5 min adding 1 min each day. I think it's really helped. I hope you start to feel better soon!

Maine, I copied this so I can't take credit. But it really made me smile and I hope it makes you smile to. You are beautiful and you will get through this!

Maybe you just needed a reminder, and that's why you're now reading these words. Whatever the reason may be, it's important you know that the title is true, you are loved.


Your dreams deserve a chance to be born. So it's alright to be a little selfish. It's alright to say 'no' to too may demands and requests. Our time here is limited; each moment precious. Your dreams have a right to be more than just dreams. Even if you worry what others will think, that you'll be deemed "crazy" or "weird..." don't. It's only because you're doing something different and spectacular with your life. Embrace you and your vision(s). Create every day, experience something and someone new every day. Your older, wiser, kinder self will appreciate it wholeheartedly. So will your grandkids when you have outrageous stories to share with them.

Spend time with those you love and care about as much as possible. A life can be stolen within seconds, so spend it wisely. If you love someone, tell them. Hugs and kisses should be given out in large doses. Listen too closely to the heartbeat of the one you love as you lie next to them, remember the sound of them breathing. Inhale their scent. If you encounter someone who needs a helping hand, lend it. Assuming someone else will take care of it may not always turn out to be true. Be gentle with others. Be it humans, an insect, a dog, even Mother Earth. This world is gentle. It's us who turn it so sour at times. So choose kindness. Because battles are being fought everyday by someone, somewhere.

Finally, be kind to yourself. Forgive your imperfections. No matter what you think, you ARE doing your best and trying hard enough. Life can throw you some real curveballs, so it's okay to nurture yourself. It's okay to ask for help, to let down your guard and be vulnerable. It's okay to cry and genuinely feel what you're feeling (be it happiness, grief, anger and more). Take time to relax. Watch the sunrise on the beach (it's breathtaking!), remember the scent, taste, sound and texture of every experience. Talk to God, Jesus, Allah...whoever instills comfort inside of you...as often as possible. You ARE heard. Create a mental scrapbook - embrace memories, but know when it's time to start a new chapter of your life. There's so much out there waiting for you!

You're worth it. You're loved. You're beautiful.

Much love to you and yours. <3

Margaret I'm on 2 drops of AL comolex in the am and 3 drops at night and that's it. I'm supposed to start 2-3 caps of charcoal twice daily and Questran 1 scoop twice daily. about a week after the binders I am supposed to start doxy.

I only had 3000 mg of amox a day for a year so far, because I was breastfeeding when I was diagnosed and that's all they dared give me, and I was nursing two babies.

I was supposed to get a picc line and the financial plan fell through so my LLND put together this plan for now.

He still insists I need a picc.

If I'm herxing it's every day. I had IV iron Monday bc my ferritin is undetectable and I had a B12 shot yesterday

Maine, my prayers are with you. That darkness is so bad, i know. Hang in there, it will pass. Take care of yourself however you need to! Im a nurse too and i understand your hesitation but we nurses need help at times too!! I know you have children and are doing everything on your own, but if you can take some time and sleep. When i had those moments, i literally took myself to my room and stayed there, sometimes for quite awhile if my schedule allowed. I slept alot as well during this time. It really helped me recover from these spells without upsetting myself or anyone else. It will get better ....

hi maine I feel your pain and i will pray for you. I want you to know that we are here for you and will listen. feel free to email me anytime if you need to talk.

I was in such despair 2 months ago, I could not cope, felt I was going to die everyday, herxing and all that stuff, I decided to just go away, from my husband, I bought a house in my home town because it was my dream house in a historic district, and I said " I can die in it " my husband is stressed, he has a crazy son, my family is unsupportive and thinks I am crazy. I have been sick for 20 yrs, and just got a lyme diagnosis in october. I have suffered and suffered and I hear your suffering too. I wanted to run away I wanted some kind of relief from my suffering.

I finally decided I needed more emotional support and that part of my illness is due to my emotional wounds, I am a victim of covert sexual incest and child neglect. so I got a therapist that I can see over Skype and I write in a diary to her 8 times a month and she responds. the name of this group is prettypaddedroom.com it is wonderful. I cannot tell you how much she has helped me and the release it has given me. also she supports all the pain with my illness. I also felt that no matter how hard, on the days I felt functional, to go outside on sunny days. and to start back feeding my soul. my soul is fed by my horse sonadora. I am having her moved very close to my home, and at least to spend more time with her, and pet her, I cannot ride her while so ill. now I try to read funny quotes, positive affirmations. watch funny movies. do you have a pet? my pets are life savers. music is a soul feeder for me and nature.

it has been very hard for me to accept my limitations due to my illness but I am learning to be grateful for the smallest of things, and on the days it gets bad, I keep talking to yall here. It has really been my only outlet besides my husband, and now a therapist. but altho my husband listens, noone knows our pain like we do and our fellow lymies.

don't give up. I have come a long way over the last 2 yrs. I was in bed all of 2012 and half 0f 2013. I saw noone but my husband and got out of the house only a few times. I was lonely sick and miserable. and even my husband did not help fill the void of despair I felt. like you I am a nurse a hard worker, and in the past I have pulled myself up too. but this illness has knocked me on my knees. I never knew what sick was until this. you will get thru this you can do this you are worth it. I now am getting out 2 days a week on average where before I was in bed. my healing has been slow. take one day at a time. blessings jackie

Maine it breaks my heart! Praying for you every day!

oh Maine, I am so very, very sorry you are going through this. I don't know any advice to give, but I wanted to say, that like other's here I would love to be a friend for you too!
If only we all were closer together, in the same town and could physically help you, I know I would ,and others too.
I've never been in your situation, so I suppose it's easy for me to say hold on, but please do hold on. You never know, you never know when a change for the better will happen; maybe it will be sooner than you think.

I will keep praying for you, everyday. Hold on.

Post Edited (stacestar) : 4/26/2014 11:25:22 AM (GMT-6)

Well, my mom gets SSI and her trust is protected so she can maintain her trust, and not lose her SSI. This is why she can't give money to anyone. I am her sole beneficiary, she has a 400,000 home paid off, my grandparents built it for her and paid cash, then they left her an amount that I am unaware of, and when there million dolale home sells she and my aunts split the proceeds 4 ways including the very valuable contents of the home. So needless to say she is in a place to help, but not according the the legal limitations that protect her trust if that makes sense.

My grandparents didn't leave me my own seperate inheritance because my mom has always been the controlling titrater of funds. They assumed my mom would help me and leave the rest to me, but my mom said they didn't realize the trust would be all messed up because of her SSI.

Outside of that I have never been in this place with these thoughts in my life. I'm a very upbeat person who loves to laugh and jokes about most anything.

My mom came over today and kept looking at the time, her dog likely needs it's toenails painted.....

It's not just the rest it's this severe depression I can't pull myself out if that's scary.

Precious Maine…I am so sorry that you are going through this deep dark time.

It may feel like there is no hope and it may look like there is no hope, but that is not the truth! Our feelings and thoughts, even the pain in our body, can shout so loud to deceive us and cause us to think that everyday will be the same as the day before.

I'm not saying it's going to be easy, however, I know when we start to focus on those thoughts it can produce fear and we can begin to lose hope.

Perhaps the only thing worse than LD and Co is to lose hope.

Having a bad day today…or the worst day of our life tomorrow…does not mean that a very good day, even the best day we've had in a while is not just around the corner.

I encourage you to grasp hold of those seconds in the day that are good. Cherish them. Think on them. They are there…really…I know it. Be still and quiet your mind…those good seconds are there all around us. Who knows, it's quite possible that one day those seconds can turn into minutes, can turn into hours, turn into days, turn into weeks, months, etc. We do not know the future so why should we assume a bad future for ourselves? Why not assume that something good, something very good, is on the horizon and take heart!

You grieve the way things used to be…the losses…but who knows…it could very well be that in the future things will be more wonderful than you could ever imagine at this time in your life.

I have found truth is so freeing. And the truth is unless a person has been sick, really sick–like you–they cannot understand. Even the people who love us most may say or do things that are hurtful…and they probably well…and seriously, it is even to be expected…lower the expectations of them…because they truly don't understand. May God protect your heart from their comments or even actions so that you are not brought down more. It zaps our energy and you need to save your energy for healing.

Picture someone you love going through what you are going through. Stop right now, pause, and do it. Think about it for a few minutes, let it sink in. Now think what would you say to them? Pause and think about those words. Ok…now continue…

I'm sure you would speak to them with love, compassion, hope, and understanding. How would you treat that person you love so much? I encourage you to speak to yourself with those same words. Treat yourself the same way you would treat them. You are worth loving. You are precious. The last chapter has not been written and there is more to life than just today!

Take one day at a time and live one second at a time. God's grace is here in this second and in this minute. And the truth is your family does love you, even if they don't always express it.

When a person is sick…we can't do everything…actually a person, even a healthy person, can't do everything…it's such a deception of the day and time in which we live..something will give...one way or another, one day or another...we/they cannot do it all!

As others have shared already…I, too, encourage you to sleep, rest. It is important. Our body is able to heal while we rest. It refreshes not only our body, but also our mind, our soul, and spirit. Talk with your husband and try to find a way that you can get some rest.

I'm praying that the God of all hope encourage you with hope for today, this second, and for a brighter future. May you sense God's love in a special way right now. Yes, Maine…you are precious and loved with an everlasting love. You are never alone.

There is hope…I know first hand. I remember what it was like to lay in bed...so confused in my mind, in so much pain that I couldn't talk and was too exhausted to get out of bed. In my mind I prayed a one word prayer, "Jesus", "Jesus", "Jesus". I could not feel Him but somehow in the midst of it all...Jesus gave me hope. I am several years in remission and look forward to the day that you too can say that!

You are in my prayers! The best is yet to be!!!

Please PM me...send me an email...I'm glad to give you my phone number and we can talk.