I don't know if anyone will read this, but this is my letter to my friends and family. I'm 55 years old. I live in a older mobile home we bought and fixed up. No help is out there it seems. Working in my condition is just a burden on everybody I work with. I work in a nursing home, that has been my work for the last 20 years or more. In 1981 I lost my 10 month old son, he was premature, they said it was from stress I went into labor, and I was going through some traumatic husband and wife diffuculties. My husband was cheating on me. And was never around, in fact when my baby was dying in my arms he wasn't around. He was taking a bath, laughing, and I dressed him, went to give him his bottle and he quit breathing. After being rushed to the hospital tey could not save him. The last time I held him , he was cold, and just laying there. You never ever forget that. When I went to work in the nursing home, I knew how precious life is. I hoped if I was the last person to make them smile or laugh, then I was giving back. Now I am sick, I have degenerative disc disease, spinal disorders, arthritis, major depression and anxiety, I can't lift over 10 pounds, and then now I have Fibromyalgia. People at work don't understand how much this chronic pain affects me. Then I find out it takes years to get disability, that is if you make it till then. I am very scared, frightened about all this, I've heard of people over dosing because they kept trying to get out of pain. I don't want to be that person. I just pray for one day of pain free, and I don't see it happening. I think to myself, I have worked all these years, trying to give my heart to people. And it makes me cry, because theres so many people that don't have one. Since I can't lift over 10 pounds I have to ask for help, I work in the Dietary department, it's so humiliating, some will, some roll their eyes. I'm the asst supervisor, but I have to be out there working, prepping food, serving, in chronic pain. And another thing that I think about is, I see other people take something for pain, and they feel better, I don't. What's going on in my life. My body is dragging down. I'm so very tired. If I waited for a year or more for help, my life would be destroyed. My husband is on Social Security, and I might have a older mobile home, but its my home. I pray something good will happen, What do I do? Sell my older mobile home, give up my home. Live on the streets. I don't have the income to wait out getting help. All you seem to get when asking for help is, oh I'm so sorry. I know. And I would give the shirt off my back to help someone else. Why is the world so cruel? Please if anybody reads this, please I need all the prayers you can give me. It doesn't cost anything to pray in fact heres mine. Dear Lord, I send you my prayer for all the people suffering with different diseases, and pain in their life. Please give all of us one day of no pain, so we can remember what it was like, I pray that all of my friends on this page get the help they need. And I pray that people understand and are willing to help, Because we all need your help right now, to go on with our lives because of our loved ones. As I bow my head dear god please hear my prayer, Amen And God please help me today as I go on today, please let someone hear my prayer and dear god help me get the help I need so desperately. Amen
hi Joni,
i heard your prayer for others and for yourself and i just prayed the same for you and all others.
You sound like such a loving, caring person who has given so much kindness of herself. You are very lovely and special.
I know you will never forget the loss of your dear child. I have had losses of very near and dear ones and i can not imagine getting 'over' it. I just accept they have passed and i believe their spirits are tranquil and at peace and for that i am very grateful even though i wish they were still here with me.
i send you
HUGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGS
suzie
Oh, Joni. God has not forgotten about you. What a giving & brave soul you are. The loss that you experienced at such a young age; how strong you are. I cannot imagine the pain from losing your precious son. I was 35 when I lost my husband to lung cancer; that was hard but I thank God that my son is 25 years old, alive & well. You have a HUGE heart to do the work that you have been doing for more than 20 years now. It takes an exceptionally giving & loving person to work in your field. So, I feel that I already know a lot about you,Joni.
So, let’s see–no, you don’t sell your home-everybody needs a safe place to live. No, you are not a burden on those that work with you. Your employer has recognized your integrity & good work ethic as you are the supervisor’s assistant. You have proven your worth to your employer & they must value you as an employee. Ok, do you have insurance coverage thru work or? When was the last time that you actually sat down with your doctor & has this discussion? You should not have such pain, day in & day out. I think you may benefit from having your doctor reaccess your care plan, maybe look again at the meds that you are prescribed & go over the alternatives &/or adjustments that may be needed. Also, what is your primary need, financially speaking? Short term, you love the work that you do but need to be able to work without all the pain that you are in. I think your doc should be able to help you with that. As for disability, you may want to post that question to those that have gone thru or currently going thru the disability process. I believe there is a specific group within this site whereby you could get additional information. Now, as for monetary issues, there are different avenues for help. Not just governmental programs, but other charitable programs offered thru many other organizations & churches. Here where I live, I know of several avenues that offer assistance for things like heating assistance. I work at our electric utility so I know about these kinds of programs. Also our local help center is an awesome place to help with groceries & clothing needs. I take fresh eggs to our help center food program each week. There are assistance programs within the pharmaceutical companies that assist with the high cost of prescriptions. You are 55 years old; I am 52 years old. I share some of your health issues as I have Hashimoto’s disease, osteoarthritis thru out my body but especially concentrated in my spine & hips, degenerative disc disease, interstitial cystitis, IBS, diverticulosis, & FMS. Wow, putting all that together makes it sound like I am a walking disaster! Even today, I am home off work because of a terrible flare. Extreme weather changes do this to me. All of this to say that I feel some of your pain. I get way down in the dumps some days–nothing in my life is the same as it was even ten years ago. I do have a wonderful PCP that works closely with me when I am having problems, especially with increased pain. Without my PCP, I wouldn’t be able to function. I hope that your husband is supportive of you–that means a lot. You have faith in God & the fact that He answers prayers. I will keep you in my prayers with the hope that you can see your way thru & come out on the other side, feeling less pain & better able to cope.
HUGS from Deb
Hello Joni,
Sometimes a post brings tears to my eyes - yours did, and of course I shall say a prayer for you.
Your post did show you are a strong and kind person, please don't lose sight of that and hard tho it is try to remain positive.
The loss of your baby at such a difficult time in your life, was such a dreadful thing to happen. I lost a grandaughter to stillbirth in 2011, we still grieve for her and always will. Did you ever have bereavement counselling, or are you able to access it? I am in UK, so don't know what you have available. Also please let your Doc know how bad you are feeling, if you haven't already.
I don't know if this post is helping you, at least you know there are people here who will read it. I am full of admiration that you are still working full-time - see you are a strong lady. Stay strong, look for the positves and please let us know how you are getting on
Take care, Anne
Hi Joni,
Thank you for the prayer. I’m hoping you receive some relief soon.
I am 57 and my husband is on SS too. I had to stop working as the pain was too much. It’s a struggle financially.
Hope you can find some peace.
Lots of gentle hugs to you.
QW
Hi Joni,
I just sent you a private messy and a friend request. I live near you and maybe I can help you with the SS disability process. I have been thru it and got approved so hopefully I can help you. I hope to hear from you soon. In the meantime I will be praying for you and thank you. Thank you for praying for all of us. That was special.
Jackie S (Donna)
Hi Joni,
I hear your call for help and will try to give some.
Firstly, the reason you see some people getting help for their pain while you don't for yours is that fibro is due to nerve pain. It's a totally different type than muscle and joint pain, so.standard pain meds offer little to no relief. However, there are several that do help those of us with fibro: Lyrica, Cymbalta, Savella, Gabapentin. They DO help Many of us, although nothing takes all of the pain away. Jackie has offered to help you with the application, which is great of her. If you both find it overwhelming, however err, I'd recommend using an SSDI attorney as they know exactly what info is needed to cut through tons of red tape. I used Allsup.And was approved the first time through. It took about eight months, but I suffered around with the paperwork for about a.month so it took six or seven months.
For your emotional support, please feel free to come back here. All of us know exactly what you are going through as all of our stories are about the same, and we all have compassion for fellow fibro sufferers. Truly, there is no reason to feel alone in this anymore, as we are here and we will listen.
I hope that this answers at least a part of your prayer. You deserve to get help for this UGLY illness!
HugsPetunia
Some are very expensive but I know that at least the first two meds have financial assistance available through the makers of the drugs. When I first was diagnosed, I got six free months of Lyrica and boy, that was a lifesaver! You will need a prescription through your doctor though.
It's imperative that you get your SSDI disability paperwork in ASAP because you are in a very bad place physically and your job will get no easier, nor will the fibro. I too worked at a nursing home and it's just killer work.
Petunia Girl said:
Hi Joni,
I hear your call for help and will try to give some.
Firstly, the reason you see some people getting help for their pain while you don't for yours is that fibro is due to nerve pain. It's a totally different type than muscle and joint pain, so.standard pain meds offer little to no relief. However, there are several that do help those of us with fibro: Lyrica, Cymbalta, Savella, Gabapentin. They DO help Many of us, although nothing takes all of the pain away. Jackie has offered to help you with the application, which is great of her. If you both find it overwhelming, however err, I'd recommend using an SSDI attorney as they know exactly what info is needed to cut through tons of red tape. I used Allsup.And was approved the first time through. It took about eight months, but I suffered around with the paperwork for about a.month so it took six or seven months.
For your emotional support, please feel free to come back here. All of us know exactly what you are going through as all of our stories are about the same, and we all have compassion for fellow fibro sufferers. Truly, there is no reason to feel alone in this anymore, as we are here and we will listen.
I hope that this answers at least a part of your prayer. You deserve to get help for this UGLY illness!
HugsPetunia
Some are very expensive but I know that at least the first two meds have financial assistance available through the makers of the drugs. When I first was diagnosed, I got six free months of Lyrica and boy, that was a lifesaver! You will need a prescription through your doctor though.
It's imperative that you get your SSDI disability paperwork in ASAP because you are in a very bad place physically and your job will get no easier, nor will the fibro. I too worked at a nursing home and it's just killer work.
ty for listening and your advice
Petunia Girl said:
Petunia Girl said:Hi Joni,
I hear your call for help and will try to give some.
Firstly, the reason you see some people getting help for their pain while you don't for yours is that fibro is due to nerve pain. It's a totally different type than muscle and joint pain, so.standard pain meds offer little to no relief. However, there are several that do help those of us with fibro: Lyrica, Cymbalta, Savella, Gabapentin. They DO help Many of us, although nothing takes all of the pain away. Jackie has offered to help you with the application, which is great of her. If you both find it overwhelming, however err, I'd recommend using an SSDI attorney as they know exactly what info is needed to cut through tons of red tape. I used Allsup.And was approved the first time through. It took about eight months, but I suffered around with the paperwork for about a.month so it took six or seven months.
For your emotional support, please feel free to come back here. All of us know exactly what you are going through as all of our stories are about the same, and we all have compassion for fellow fibro sufferers. Truly, there is no reason to feel alone in this anymore, as we are here and we will listen.
I hope that this answers at least a part of your prayer. You deserve to get help for this UGLY illness!
HugsPetunia
Some are very expensive but I know that at least the first two meds have financial assistance available through the makers of the drugs. When I first was diagnosed, I got six free months of Lyrica and boy, that was a lifesaver! You will need a prescription through your doctor though.
It's imperative that you get your SSDI disability paperwork in ASAP because you are in a very bad place physically and your job will get no easier, nor will the fibro. I too worked at a nursing home and it's just killer work.