******** Attention: Mamabear2157 ********

Discussion in 'Fibromyalgia Main Forum' started by JLH, Feb 9, 2006.

  1. JLH

    JLH New Member

    Mary Ellen,

    I got a reply from Carolyn Glein who is co-founder of this fibro support group and she said that yes, she would love to publish your poem in a future issue of her newsletter.

    She said that she is currently working on the March/April issue, so it would be after that--they she always works many issues ahead.

    Please send her a note with your name and address (and the name of your poem to refresh her memory -- and that it is the one that Janet from Kentucky sent her via email) and that you OK it being published. This way you will get credit for your poem. She said "it was a good one!"

    Send her a note to:
    Mrs. Carolyn Glein
    Northcoast Lupus & Fibromyalgia Support Group
    294 SW Cedar Ave.
    Warrenton, OR 97146

    or ... that support group has a website, you can find it through a google search and it has her email address on the home page ... you could do it that way.

    Let me know how your communication with her turns out, so I can watch for your poem in the newsletter (I subscribe to them)!

    You have such a talent ... thanks again for sharing it with all of us here on the board!

    Hugs,
    Janet
  2. mamabear2157

    mamabear2157 New Member

    Janet,

    Thank you so much. I am having a bad day today,(I think it is going to be an early night for me) so I copied your post and sent it in an email to myself. I will try to get in touch by this weekend.

    Thank you for your kind words, and for sharing my poem. I didn't realize how good it can make one feel that someone thinks they have a talent they didn't even know about. You made my day.

    Thanks again.

    Gentle hugs,

    Mary Ellen
  3. JLH

    JLH New Member

    I am sorry that you are not feeling well today. I hope some rest will help you.

    It is really the pits to be this sick. I have so many other problems in addition to my fibro/cfs, that I could count my good days in a year on my hands! Yuck! (see my bio and you will see why!)

    Let me know when you have sent your note and I will go back in and delete the post with her name in it and the name of the support group.

    You're a Star!!!!
    Janet

  4. mamabear2157

    mamabear2157 New Member

    Janet,

    You are truly the star here. All I can say is WOW!! I read your bio. It is funny though, a lot of what you have and are going through, are the things they want to test me for. Unfortunately, I can't afford to have to pay the remainder of what Medicare doesn't cover right now, so it seems that everything gets put on hold.

    I am feeling a little better today. My oldest daughter (24) and her husband are renewing their vows tonight, and my youngest daughter (23) got hurt at work on 1/4/06 so I end up bringing her to and from work, so my days have been really busy. I hope to be able to write the letter tomorrow or Sunday. I have my three y/o granddaughter overnight on Saturday, so my weekend will be kinda full. Thank you for leaving the post for me. I truly really appreciate it.

    Well I need to go and get ready for my daughter's vow renewal. Hopefully I will get a chance to be back here later tonight. Again thank you.

    Gentle hugs,

    Mary Ellen
  5. JLH

    JLH New Member

    What type of problems do they want to test you for that I have? Lupus? Do you have any secondary insurance that would help cover some of the expenses? Sometimes, the doctors want to run TOO MANY tests that might be unnecessary.

    I see by your bio that we are just a few years apart in age--I just turned 55 on Feb. 2nd, and that we both have diabetes, too. I take Glucophage, Actos, Prandin, and Lantus Insulin for the diabetes. I don't have it under very good control now--I just don't the diet that I am supposed to!

    Have you ever tried Cymbalta? I used to be on Prozac, but changed to Cymbalta. It helps me a lot more on the fibro pain and it has been approved for use in diabetics to control the diabetic neuropathy pain. The Neurotin that I take also helps on my fibro pain.

    If I can remember (have trouble with that), you also said that your doc won't let you take Ambien any longer. Have you tried Zanaflex at bedtime? It is a muscle relaxer and is very sedating--so it helps you sleep. I don't think it is habit forming. I take a small dose -- 6 mg -- and it helps me sleep and wake up without a hangover effect.

    I was just given Volteran by my Rheumy a few weeks ago to try for my arthritis--nothing else that I take helps it. I had tried a half dozen NSAIDS for the arthritis and nothing had helped--but this did! So, I am so glad that a lot of my arthritis pain has lessened.

    My biggest problem now is my back pain. I have enough back trouble, then I developed a pinched nerve at the base of my spine (between L4-L5 and S-1) and it is a real killer. I can't do anything because of the pain. I can't stand up for more than 5 min. or walk very far. If I go to a store, I have to go to one with a motorized cart like Wal-Mart has, or have someone take me with my wheelchair. It's horrible. When this nerve goes into spasms, the pain is horrific. The only thing worse that I have had has been kidney stone pain--and I've been through many surgeries, too!

    It is so romantic that your daughter and SIL are renewing their vows! Especially around Valentine's Day! Hope you were feeling well enough to enjoy it!

    Well, I have to go prepare some type of supper (or dinner, whichever you call it!) -- it won't be much, but my hubby complains if he doesn't get "something" to eat! I don't know why!!!!! LOL

    Hope you've had a good day,

    Hugs,
    Janet
  6. mamabear2157

    mamabear2157 New Member

    Hello Janet.

    We sure do have a lot in common. I will try to remember all of the questions you asked and answer them.

    First of all I am a non-insullin diabetic and take metformin twice a day and avandia at night. At the present time, my diabetes is under control, but I too do not eat the way I should. I tried cymbalta, but for some reason I have trouble with a lot of the antidepressants. For some reason they cause an increase to either my blood pressure or my pulse or both. That is what happened with the cymbalta too. So, now they are trying prozac. I take my first dose tomorrow morning, so I will let you know how that works out.

    As for the Ambien, I miss it, I just want a full nights sleep. So they are trying Trazodone. However, I can only add one new medicine at a time, so the prozac starts tomorrow, and a week to ten days later I can try the trazodone.

    I have severe back spasms, and they want to get an xray, but I haven't been able to have it done yet. Trying to find out if I will have to pay the difference. I take Flexeril, but try to take only when the pain is really bad. However I ran out and haven't been able to afford the refill. Hopefully soon. Plus they want me to go and have a sleep test done, but I have had to cancel it twice because I haven't been able to get a ride there and home.

    The doctor at my SS hearing felt I showed a lot of signs of lupus. I was sent to a dermatologist and was told I don't have lupus. The rash on my face is not a butterfly rash and I don't have lupus. No test actually done though.

    Shortly before Christmas, I fell in the parking lot of our apartments. I hurt my knee and it was swollen. I couldn't walk on it, and I ended up going to the doctor. He did an xray, and it showed osteoarthritis in my knee. However, I have known that for a while. My whole family on my dad's side has bad knees. Even my kids do. Couldn't afford to go to see the orthopedic. Told my doctor I will go eventually.

    Had my gallbladder out after having my first daughter. That pain was no fun. Thought I was having a heart attack. Had endometriosis and after years of pain and suffering, had a total hysterectomy in 1996. Opted for the total, as earlier that year they found cervical cancer. I was lucky that it was caught early, so when he did the colposcopy, he got it all. I have been cancer free since. So I guess I am also a cancer survivor.

    I noticed you are from Kentucky. I had the opportunity to visit Louisville a few times about two years ago. I loved it there. If I could, I would love to move there. I even checked into it about a year and a half ago. If I had a section 8 voucher, the woman told me that there would be no problem, but I don't. Without one, it would be virtually impossible for me to relocate.

    I know that I am my own worst enemy. I really have a hard time saying NO. Especially to my kids and my granddaughter. I never seem to put myself first. I have been pushing myself since Thanksgiving, and I am definitely showing signs of relapse. Hopefully some of the new meds will at least afford me to get some sleep. I know that is one thing I am lacking lately and I need it very much.

    As much as I love my girls, they do not understand what I am going through. If you ask them, they will both say they do, but trust me when I say they don't. I live with my youngest daughter and her boyfriend. The whole food thing is an issue. We eat late, and often not very good. I give them half of my disability check, and pay the car insurance for my daughter and I. She is suppose to buy food. So my living arrangement is not very good right now. I have an appointment with the town social worker this Wednesday (my birthday so maybe it will be lucky for me). She is suppose to help me try to get housing and some state aid. I will keep you posted. Even my therapist wants me out of my living situation. He thinks I will be better off. One of my daughter's cats has taken a liking to me, so she says I can take him with me. My therapist is willing to write me a letter as he has definitely become a therapy cat for me.

    This is why I don't post much on the boards. I am afraid that once I start I won't be able to stop talking. I am also afraid to cry. I know once I start I won't be able to stop. I won't even let myself cry in my therapy appointments, cuz I know I won't be able to stop.

    I am sorry. Just needed to vent a little. Thank you for letting me.

    I think I answered all the questions, but if I missed anything, let me know.

    Gentle hugs,

    Mary Ellen
  7. JLH

    JLH New Member

    First of all, I'll tell you what I do. I can never remember what a person has said in a post or a reply, so when I am replying, I have to continually hit the "Back" key at the top left corner of the screen. This will let you see it--then after you read what you need to read, hit the "Next" key to take you back to where you were typing! Try it next time and see if it works!

    I wouldn't take the word of a Dermatologist that you do not have Lupus. I would ask your primary care doc or a rheumatologist is you go to one. You can sometimes be diagnosed with a blood test--the blood test only shows if you have a positive ANA which is only one of the signs. I understand that you can't afford a lot of tests or doctors, so I would just wait until you are at one of those docs and ask.

    If you have frequent back spasms, then you know how back problems can get you down. I have had a few sleep studies done. I hate it that you missed the one you had scheduled. Mine discovered that I have obstructive sleep apnea which is what caused my congestive heart failure. I now sleep with a CPAP machine and oxygen. It really has helped my sleep tremendously.

    My rheumy just gave me a shot in my bad knee and it helps me 100% for about 6 months, then I have to get another one. I think it is some type of steroid. I know he told me that if it did not help that he could put a shot of something else in it.

    I, too, have had my gallbladder out, a hysterectomy, knee surgery on my bad knee, and a few other surgeries. I am fortunate that I have never had cancer. I am really happy to hear that you are a cancer survivor! Yeah!

    I know what you mean about your children not understanding about your illness. Mine don't either, really. They understand my heart problems, but not my pain that I suffer from the fibro, lupus, arthritis, and my back. They say they do, but like you, I know they don't.

    Hopefully, the social worker can help you get some state aid and an apartment on your own. I was going to ask if you have ever contacted any agency like that to see if you could also get Medicaid IN ADDITION to your Medicare--I think a lot of people do. Medicare ends us their primary insurance with Medicaid their secondary. That way, you could have a lot more testing done, etc.

    Also, if SSDI is your only income, you should be eligible for a certain amount of food stamps, and living in some of the apartments that the rent is based on what your income is. In Ohio, which is just across the river from us, the Salvation Army gives out commodities to low income individuals and families every so often, too. My sister lives in Ohio and used to get them, too. After she got so bad that she couldn't work (she has COPD really bad and had 2 total knee replacements), she did not have any income for two years while trying to get her SSDI. It took her 3 tries to get her disability. In the meantime, she got commodities from the Salvation Army, called the health department about programs, and got food stamps--everything that she could

    I hope you are able to get something worked out. You probably would enjoy a small apartment by yourself. It's nice, though, that you can live with your daughter and her boyfriend. I hope you all get along OK! But, I think there is no perfect situation when you are living with someone else. Especially when you are splitting costs for food, etc. If her boyfriend is living there, too, technically, you should only have to pay for 1/3 of the total food costs of the house--and half of your SSDI check is probably a lot more than 1/3!! I could see where a lot of problems would arise.

    You know, I wouldn't be worried about talking too much on here--it's no big deal! I am a big talker and I always ramble on and on and end of having long posts!! LOL The way that I look at it is, if nobody wants to read all of it, they will just skip over it!!

    And, I wouldn't worry about starting to cry and not being able to stop! I do that, too! I am a big talker and a big cryer!! I never did used to cry, but over the last few years, my constant pain just gets the best of me and I can't help it. It does us good to have a cry sometimes!! It releases a lot of pent up emotions that we need to get out. My kids will come in and ask me what is wrong, why I am crying, and I have had to tell them that "I don't know why I'm crying! But I just can't quit!!" So, I laugh and say that I'm just going crazy in my old age!! LOL

    Happy Birthday to you -- a little early!!!!!!!!!

    Hopefully, it will bring you good luck with your meeting with your social worker. Beg and plead with her to help you get all that you can get--tell her you are sick and need it desperately!!!!! That won't be a fib, would it!!

    Big hugs,
    Janet




  8. mamabear2157

    mamabear2157 New Member

    Janet,

    It is getting late here, so I am going to try to go to bed soon. I just wanted to thank you for your help and kind words.

    I intend to talk to the social worker about all of what you have said. I know that I should be able to get food stamps, medicaid and I should qualify for the qmb program which will give me back what medicare takes out of my check for insurance. The town I live in has a food pantry, and I figure I will be using it's services when I can get out on my own.

    My daughter, her boyfriend and I get along ok. It is just hard living with others. I know that there are times when I would love to be in bed early, but with my room being right off of the living room, it is hard. I don't want them to have to change their lifestyle for me, but sometimes it is just really hard. Don't get me wrong, I appreciate everything that they do for me, but sometimes I know that I would just like to be on my own.

    I will try to write more tomorrow, but for now I need to sign off. Have the best night you possibly can.

    Gentle hugs,

    Mary Ellen