posted
I am so tired of being strong. Everyday I sit here and try my best to keep a positive outlook. I try to find peace within myself.
But on days like this it just seems so out of reach. I feel so lost and alone. I know I am not alone. I know all of you struggle also. I know you all feel the pain. But I am the only one sitting here right now.
No one understands what I am going through. My sister and mother try but they can't. My husband..well he tries when he feels like it.
I have had such a horrific year. I had to leave my job, we filed bankruptcy, my husband lost his license...and on and on and on.
I have been dealing with IV therapy since September. Now I am on a pump that I have to take with me everywhere. It is like a sore thumb looking me in the face. I can't escape it. I can't deny it...I can't even try to pretend I am well.
I have always thought to myself that one day I will get my life back. I will be well again...but now I am not so sure. What if this is it? There are no better days ahead.
So I am left with the strugle to get through every day... If there was an end in sight it would be easier. If I knew that in 2 years I would be well again I could handle that. It is the unknown that is killing me...it is sucking me dry and I don't know how to keep fighting.
I decided a couple of weeks ago that I am leaving my husband. I can't do it anymore. I can't stay in this empty toxic relationship. But I am traped. I have no job...we have kids. I can't leave. Not now..when? Who knows.
I feel like God is testing me and I am trying so hard to keep myself together. Everything in my world is falling apart.
My kids are the only light in my life. Thank God for them..if it weren't for them I don't know if I could keep up this fight. They need me...so here I will stay eventhough I want to give up. I want to throw in the towel. I can't, I won't.
So how long will it be like this? The rest of my life? Another 40 years? Who knows..I just hope that God gives me a break soon.
Sorry for the long vent. I just needed to get it out of my head before I exploded. No one else would understand.
Thanks for listening.
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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posted
I'm so sorry that you are having such a hard time!I'm sure that everyone on this site who reads this understands how you feel, and sometimes you just need to get all those emotions out.
I also am not able to work right now, I just had to come to that conclusion a few weeks ago. It was a hard thing to admit to myseld that I just wasn't able to work right now.
I too am afraid of just being here home alone, just me and my illness. It makes you feel like you live in a whole seperate world from everyone else.
I try too to stay as positive as I can, and it is such a hard thing sometimes. But, for me I find that sometimes a good cry or just venting is what I really need. It helps me to get rid of all that junk that bothers me and that takes energy away that my body needs to heal itself.
Today, I feel like I am having a positive day and that's why I just wanted to write to you and give you a little encouragement and to know that someone cares how you feel and has been there before.
One thing that really helps me on my bad days is to actually make a list of the things that I am thankful for. It could be a simple thing like a phone call from someone or just that I had a nice comfty bed to rest in.
So, please know that you are not alone in your struggle against this disease. God does have some kind of plan in all of this, even if it is so hard right now. Better days will come, just hang in!
Posts: 8 | From NY | Registered: Mar 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Merrie, I know how you feel. This illness is horrible and it is hard to be strong 24/7.
Every year gets worse for me. I am now on short term disability (aren't I the optimist?). Some days I can hardly walk from my bed to the bathroom (about 5 feet).
Keep looking for those little rays of hope. I can get VERY excited if I can lift my left leg while walking instead of dragging it behind -- even if it's just for a few minutes.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Thanks for your kind words. I just balled all morning long. I feel better now. I do think I needed to get all that crap out of my head. The day will get better. Thanks again.
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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posted
Merrie said, " If there was an end in sight it would be easier. If I knew that in 2 years I would be well again I could handle that. It is the unknown that is killing me...it is sucking me dry and I don't know how to keep fighting." ----------------------------------------------
I think that's the hardest part! I remember it well. Each setback was more than I thought I could bear.
Are you early in your treatment, Merrie? It took an entire year of misery before I could see any improvement at all. Then another year before I could see any LIGHT at all in that tunnel!
I hope it won't take very long for you. If you don't make any progress for a year, then make sure you get TREATED for babesia, no matter WHAT the test says.
I remember talking to someone who was as ill as I was and when I was very depressed she told me to use this time to GROW. Find out WHO I was and why I'm on this planet.
That was some of the best advice I ever got! I began my journey and found out so many things about life that have helped me cope.
Life is difficult for everyone, but if you're ill, it's even harder. However, we will learn more about life through this than those who are well....and believe it or not, that is a PLUS!
Here are some books that helped me: [not necessarily in this order!]
Love is a Choice [Minirth Meier Series] Happiness is a Choice [same] Power of Positive Thinking [Norman Vincent Peale] Any book by Robert Schuller Search for Significance [McGee] Books by Bernie Siegal Experiencing God [Blackaby/King] The Holy Bible
Begin Your Journey! [PS, The first two books may help your marriage.]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
lymetoo- Thanks, I am about a year and a half into treatment. The antibiotics have helped but
when I stop It all comes roaring back. Most of my doctors patients are further along than I am right
now. I may be one of those people that will be on maintaince antibiotics for the rest of my life. I
know it is too early to tell but it is in the back of my mind.
I have been out of work for a year now..and regardless of my condition I HAVE to get back into
the swing of things. I have to feel in control of my life even if I am not in control of my illness.
This last year has been controling me. It has been a terrible whirlwind that most well people
would have a hard time coping with. My sister doesn't know how I have handled it. I am strong I
know that. I will get through this.
Thanks again.
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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posted
it is hard being strong 24/7 when everything has been taken away. I have my moments of sheer terror; losing eyesight doesn't help.
I get my strength from being on this board, trying with what I have left from my nursing background to help others and seek information.
I look at my mom and dad and my cats sweet faces and know I have to keep fighting- sometimes I succeed better than other times. I keep going. When it gets really bad, I have a good cry, get it out of my system and try again. Then I get hold of a friend and try to find some goodness somewhere, somehow to keep me going.
I will keep you in my prayers today to help keep you strong.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
I thought I would be on abx the rest of my life too. I'm hoping that Rifing will keep me off them. I haven't taken many abx for the past 2 yrs [except for when I had my gall bladder out last summer].
Be sure to keep your body free of yeast and eat healthy. Do alternative stuff as much as possible. There's alot to be said for that!
Hang in there, OK?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
I nearly cried when I read your post. This illness is such a test, a test for us and for every relationship we have.
I am so sorry that your relationship with your husband is not what you need it to be. It there is anything there to save, please try. Try for you and for the children. I can't imagine fighting this terrible illness without the wonderful rock that is my husband although we do have times when it tests our very strong relationship because this sickness is that evil.
2 years ago I was about to give up, I was about to go on disability and I was hopeless and on massive amounts of pains meds. Today I have hope. I only found out what was causing my pain and symptoms 3 months ago and already I am making progress, there is a long way to go but there is light at the end of the tunnel.
Hang in there! Know that we do understand in the way that those in your day to day life can't.
Sometimes you do need to just let go and cry.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
talk about what bothers you so you don't have to carry it alone.
we're here
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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My heart goes out to you. This illness is so tough to handle and it takes every fiber of our being just to make it through the day for ourselves and family.
I see someone with a great spirit and intense mothering instincts. Your strength comes through even though you are feeling lonely and defeated.
I used to pray for clarity when it came to my relationship. I couldn't for the life of me make up my mind whether it was more damaging to stay or to leave. In time it became more clear what the answer was but it was in god's time, not mine.
I don't often post but read the posts everyday and they are so inspiring for me. I can't imagine not having this outlet for my soul when I don't have a friend or family in sight who understands or cares.
Anyway, keep trying and keep posting. Posts: 460 | From Illinois | Registered: Aug 2005
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posted
Thank you everyone for your kind words. I knew you would all understand since you are going through the same thing. Today was a better day. Hard but better.
God bless all of you. Without you I would be lost.
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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When I read your first message, I was right there with you which reminded me of how I felt 2-3 months ago. I didn't think I wanted to go on either.
My grandmother will be 92 tomorrow and I felt as old as her and I am not even halfway her age yet!
Every now and then, I have a horrible day with crying jags feeling as you described.
My husband hardly understands what I am going through and our marriage has been terrible, ever since before I became very sick and been without a job for nearly 3 years now.
However, after finally being diagnosed with LD which I'd already suspected for 2 1/2 years, yet to be told that my lab tests were negative. My doc finally said that they had to be "false negatives" for all my worsening symptoms and nothing else has helped.
So now, I've started reaching out:
learning more about Lyme Disease on the internet,
getting on this board to give and receive support,
picking up books from the library on LD and chronic illness,
becoming my own advocate and overwhelming my doctor with things he hardly knows about,
requesting LD treatment and pushing my doctor to learn more and find other LLMDs,
attending local support group meetings & seminars to listen to presentations and keep learning!!
Doing this gives me more hope which I find is better than doing nothing, even though I have no idea of when I'll be so much better.
And in the middle of all this, I still have a bad day when I feel SO HOPELESS and cry my eyes out, then it's back on the path to the light at the end of the tunnel.
Hang in there! We are all here together!
Posts: 90 | From Maryland | Registered: Jan 2006
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posted
Thank you moose. I appreciate that you wrote me. It makes me feel better to know I am not alone.
I wish you brighter days ahead.
God Bless
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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bettyg
Unregistered
posted
Merrie, I hear you and feel your tormented pain.
Have you filed for SSDI, social security disability insurance, benefits yet?
IF NOT, please go FIRST to DISINISSUES, disability insurance issues, and there are wonderful files/links there to prepare you for doing the paperwork just right & providing the necessary info in the way DDS, disability determination services, staff want.
I'll include info about that here for you & 1 other woman who said she left her job due to her health. DO NOT WAIT, start on your end getting the needed paperwork to file for SSDI!!
IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS
Hi! I know what you mean about memory & typing, etc....it's the pits!
I do suggest you join the FREE DISINISSUES and read thoroughly or just print it all off of the FEMALE MD with chronic fatigue, etc. she gives wonderful, detailed examples that DDS, disability reps, want to approve/deny you.
Also have you looked thru the ADULT APPROVED LIST OF IMPAIRMENTS? That's critical also!
note 1.04; look at the rest of the 14 other specific areas too....
I printed off 1-14 sections showing what brief guidelines were for each section. I used that against ALL my medical reocrds, 3" thick!! Then I went to their DETAILED specifics for the sections that applied to my illnesses!
TIMECONSUMING....TOOK ALL 7 WEEKS from my notice of my ALJ hearing date!
So you have NOT submitted your INITIAL APP TO SS OFFICE, correct? Good, you want this to be as complete as possible so they can NOT turn you down on the 1st step as they do us all!!
============================================= What I did with an online friend was this: prepared a chart noting the specific section of 1 - 14 that my diagnosed illnesses showed the wording, dr. seen & date.
Example, 14.09 LYME disease is mentioned in but doesn't give any examples. So I showed 14.09 with my drs. name & date plus specific details about each visit where lyme symptoms were stated..
I hope you have a copy of ALL MEDICAL REPORTS...drs., xrays, all blood labs.
It's critical that you KEEP A COPY FOR YOURSELF! ==========================================
On mine, I showed the date mailed to ALJ & LAWYER PLUS I kept a copy. Then I went to copy center nearby & copied and mailed promptly to lawyer per his request.
WHY THIS IS IMPORTANT: if you have an ALJ hearing, request thru your local SS office to REVIEW your complete SSDI app at THEIR local office! When you see things you submitted with your writing on, don't look at them!
Look & read only the secretative RFC & MFC done by the the in-staff DDS DRS/PSYCHOOGISTS! You want to make copies of ALL the stuff they have & other stuff you don't have so you can use that info against them!
ACTIVITY DAILY LOG, ADL link is: http://f4.grp.yahoofs.com/v1/oHfvQzZLYvcfvmUv V4L_ayW4_l5PFECbH9UA2BR_YfE66JZ0ZSxttbcO7NZqu HpjUfnUxG9wWuH7WPXAzrR7YqCnrsO80V5hSxJwduQ/ Activities%20of%20Daily%20Living%20questionnaire
At moment, can NOT find MFC questionnaire, but look at site on links/files. It is there but not visible to my eyes presently. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! NOTE: I'D DO THIS DIFFERENTLY NOW! SEND 1 COPY TO ALJ and 1 to your lawyer! Lawyer did NOT SEND MY REPORTS TO DDS STAFF PROMPTLY; they didn't see many things when they denied me although I had good medical info!
Examples, 2 RFC, residual function capacity done by PCP dr. of 26 yrs. & rheumatologist;
plus 2 MFC, mental function capacity, done by psychiatrist & psychologist.... the 1st person was the one judge used in APPROVING my 2nd claim for severe depression/effective disorder & anxiety.
ALJ's don't like working with LYME, FIBRO, CHRONIC FATIGUE. MENTAL is on approved list of adult approved impairment list! So don't fight it, go with it!
================================================== IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS ============================================== This message is sent upon subscription, and again monthly. Please let the moderators know if any of the links have changed.
There are many more links, as well as advice, in the "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
BETTY NOTE: Look at the female MD's DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future!
These links are a compilation of several areas of interest which are commonly requested and mentioned. They reflect the collected wisdom of this group. Check them out - you just might find the information you were looking for! Take a look at Files that are not specific to your situation, because they might be helpful anyway - what works for Social Security may work for LTD claims, what applies to CFS may apply to your medical condition.
The Welcome Message and Group Guidelines are also in Files, if you need a refresher on how this group works.
You must register with Yahoo to use the website, but note: Be careful not to permit your address to be put into the directory when you register. Put as little as possible into your public profile. You do not need a Yahoo address to use the website. Your email address is what Yahoo calls your "alternate address." Contact the moderators at [email protected] or for AOL subscribers: Click here -----------------------------------------~--> Disinissues website - http://groups.yahoo.com/group/Disinissues
DO NOT FORWARD ANY MESSAGE FROM Disinissues WITHOUT PRIOR WRITTEN PERMISSION FROM THE AUTHOR Do not distribute any member's email address.
NO MESSAGE ON THIS LIST IS TO BE CONSTRUED AS LEGAL ADVICE --------------------------------------------~-> Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/Disinissues/ To unsubscribe from this group, send an email to: [email protected] Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
An online friend of mine from disinissues web site posted this info today, so I have copied it over here.
Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?
Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.
There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet. I too plan on including this info when I send my FINAL packet of info to chief alj before my June 16, 05 hearing...my last chance! =======================================
Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM.....
Also after this article are the following articles:
WHAT COULD BE CAUSING DELAYED-PHASE FLARES?
BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS..
TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF.
MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS
DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY
I printed this out in larger print for my eyes....9 pages! Will read it thoroughly
and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also.
IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS Hi! I know what you mean about memory & typing, etc....it's the pits!
I do suggest you join the FREE DISINISSUES and read thoroughly or just print it all off of the FEMALE MD with chronic fatigue, etc. she gives wonderful, detailed examples that DDS, disability reps, want to approve/deny you.
Also have you looked thru the ADULT APPROVED LIST OF IMPAIRMENTS? That's critical also!
note 1.04; look at the rest of the 14 other specific areas too....
I printed off 1-14 sections showing what brief guidelines were for each section. I used that against ALL my medical reocrds, 3" thick!! Then I went to their DETAILED specifics for the sections that applied to my illnesses!
TIMECONSUMING....TOOK ALL 7 WEEKS from my notice of my ALJ hearing date!
So you have NOT submitted your INITIAL APP TO SS OFFICE, correct? Good, you want this to be as complete as possible so they can NOT turn you down on the 1st step as they do us all!!
\============================================= What I did with an online friend was this: prepared a chart noting the specific section of 1 - 14 that my diagnosed illnesses showed the wording, dr. seen & date.
Example, 14.09 LYME disease is mentioned in but doesn't give any examples. So I showed 14.09 with my drs. name & date plus specific details about each visit where lyme symptoms were stated..
I hope you have a copy of ALL MEDICAL REPORTS...drs., xrays, all blood labs.
It's critical that you KEEP A COPY FOR YOURSELF! ==========================================
On mine, I showed the date mailed to ALJ & LAWYER PLUS I kept a copy. Then I went to copy center nearby & copied and mailed promptly to lawyer per his request.
WHY THIS IS IMPORTANT: if you have an ALJ hearing, request thru your local SS office to REVIEW your complete SSDI app at THEIR local office! When you see things you submitted with your writing on, don't look at them!
Look & read only the secretative RFC & MFC done by the the in-staff DDS DRS/PSYCHOOGISTS! You want to make copies of ALL the stuff they have & other stuff you don't have so you can use that info against them!
ACTIVITY DAILY LOG, ADL link is: http://f4.grp.yahoofs.com/v1/oHfvQzZLYvcfvmUv V4L_ayW4_l5PFECbH9UA2BR_YfE66JZ0ZSxttbcO7NZqu HpjUfnUxG9wWuH7WPXAzrR7YqCnrsO80V5hSxJwduQ/ Activities%20of%20Daily%20Living%20questionnaire
At moment, can NOT find MFC questionnaire, but look at site on links/files. It is there but not visible to my eyes presently.
NOTE: I'D DO THIS DIFFERENTLY NOW! SEND 1 COPY TO ALJ and 1 to your lawyer! Lawyer did NOT SEND MY REPORTS TO DDS STAFF PROMPTLY; they didn't see many things when they denied me although I had good medical info!
Examples, 2 RFC, residual function capacity done by PCP dr. of 26 yrs. & rheumatologist;
plus 2 MFC, mental function capacity, done by psychiatrist & psychologist.... the 1st person was the one judge used in APPROVING my 2nd claim for severe depression/effective disorder & anxiety.
ALJ's don't like working with LYME, FIBRO, CHRONIC FATIGUE. MENTAL is on approved list of adult approved impairment list! So don't fight it, go with it!
IP: Logged |
posted
Hi Betty, I am actually waiting to here from the LTD company. They have until april 10th on the appeal I filed. If that fails then im on to the next step. I will definately use the info you gave me.
Thank you sooo much!!
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am so sorry that things are rough for you....
I have been there.
Please realize that
True strength requires us to aknowledge our moments of weakness.
posted
Merri, I also feel your pain and frustrtion. I have been on meds. for two months again this round, and feel really horrible. My relationship with my husband really sucks right now, and not sure if we will be able to endure. I was on meds. 10 years ago for about 6 months, and thought I was well. This illness has sneaked back into my life with a vengence. My neurologist does not believe I have lyme, and found back problems, small strokes in my brain, and thinks this is the problem. The neuropothy in my legs, arms, face, she believes to be from possible diabetes, or lack of B12. I have not heard back from my newest blood tests as yet. I have yet to return back to my lyme doc, but should get appt. soon. I have so much pain, numbness, especially in my legs. I am still trying to work, keep up on bills, and enduring other personal problems within my relationship. However, my children, grandchildren, and my work keep me going. Also my new found friends on this network, have been one of the biggest blessings in my life. Please know I am praying for you and yours. Carlie
-------------------- Carlie Smith Posts: 20 | From missouri | Registered: Feb 2006
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