A Division of CSSA

Freda Speaks

Have you ever had to choose between paying the electric bill and buying needed medication?

Do you have guilt over undone housework or social obligations?

Maybe your kids ask you for something and do not understand when you tell them you can
not afford it?

Do you have a spouse who pulls back a little when you tell him you just "Can't
take that ride, or be intimate today"..for the 100th time?

Do you feel like less than a human if you are forced to ask for food stamps? Medical help?
Extra time to pay a bill you owe?

If so, you must read this letter. This gem came from a wonderful person I am lucky enough to know.
It started as a protest letter to her state government about a proposed bill. After reading the letter
I realized that Freda had put emotions, stresses and realities into words.
Freda hails from Texas, U.S.A

She spoke for all of us and explains what many of us go through on a day to day basis.

Please feel free to print this letter to show to anyone in your life who may need a little more
understanding of where you are in life and what you may be dealing with.

Jane Kohler-Lutz

Home

Freda's Letter:

I received your letter regarding S. 424, the Arthritis Prevention, Control and Cure Act of 2005. I understand you are not a member of the Senate Health, Education, Labor and Pensions Committee. However, we need your
vote for bill S 424 when is comes before the full Senate.

I have Fibromyalgia Syndrome and now my 17 year old daughter has this same illness.

I was diagnosed the first time in 1980 when I was 27 years old. My daughter was diagnosed in 2004 at the age of 16.
She and I both experience severe pain on a daily basis. I take seven medications to try and manage my condition. One of them being Kadian, which is a time released morphine.

My daughter and I both have to have medication to try and sleep, otherwise we are up half the night. We wake up feeling sore and stiff and we can barely get out of bed. You feel more tired and achy in the morning than before you went to bed the previous night. As you get out of bed you notice that you feel spacy and lightheaded.

You try to get on with your day, but you have trouble as you lift your arms to comb your hair or brush your teeth, because of pain and stiffness. You take the hottest shower known to man to try and help soothe your muscles.
You know you need to stretch, but is just so much pain.

You get dressed by sitting or laying on the bed wearing the most comfortable and loose-fitting clothes you own. You can't even reach around to put on your bra and if you did the straps would hurt.

Your very skin is sore, You really don't want to be touched. You have gained weight from all the medication your doctor has placed you on, so you are fat, maybe it the constipation causing the weight gain too.

You walk into your kitchen and feel your hips ache with ever step. Your hips lock up and you can't bare weight to take the next step, you are now in shooting burning pain! You feel like your thigh muscles are causing huge tears and you wondering if your knees will work. Your back and neck are killing you and you wonder if you could just chop off that part of your body so you could have a pain free day. I can't remember having a day without pain. I don't think I would know what to do if I did!

You try and manage eating, but some days you just don't eat at all, you just stay in bed and try and manage your condition with heat and ice and more pills! You have problem with swallowing and choking, you are not sure the food is going down if you do indeed eat or drink.

You forget things, simple things, pay the phone bill, check the mail box, you wondering if you are losing your mind.
You try and read, but you have problems with comprehending what you read and your eyes won't focus on the page and you give up.
You try and watch TV, but you just can't take the noise and watching the screen gives you a headache.

You are overwhelmed by the amount of work you should be doing for your family and you get depressed, how can my body be letting me down. You try and work at your computer, but your back, neck and arms scream at you, the pain, when will it stop! By lunch you are even more fatigued and your pain levels are even higher because a weather front is moving in and it's going to rain or the temperature is going to drop by 40 degrees. You are the human barometer.
You muddle through the rest of your day feeling guilty for all the things you can't get done for yourself and for your family.

Walking down the grocery isle brings on a flare that puts you in bed for days. You just decide to live in a dirty house or maybe you just
pile up more work for your husband when he comes home from a full day on the job. He grows to resent this and you fear that your marriage will come to an end.
If you work in your house you are sure to flare and be laid up for days or weeks in bed afterwards. One of your flares that stand out in your mind is when you hurt so badly you couldn't take in enough air in your lungs and you got pneumonia and it took a year to try and get over the flare and the illness by going to a pain clinic.

You don't feel much like a person anymore. More depression, deeper and deeper you fall into depression.
You collapse on the couch and use any and all electric massaging devices you can afford to try and feel better.
Your family thinks you are just lazy and become critical of you. That hurts.
You try to explain how you feel to them, and give them things to read about your condition, but they really don't believe it.
You may begin to doubt yourself and think that maybe those who say, "You're crazy," are right!

You eat foods you shouldn't trying to feel better about yourself. Now you really have another kind of weight problem.
The stress is high in your family. The money is tight on one income.
The children suffer for the lack of their Mother.
Husbands pull away and wish they had never married you. You feel worthless.

You forget to have your medications refilled and go to bed without your pain medication.
Even if you remembered, you just couldn't drive to the doctor's office to pick up the triplicate, wade through the line at the pharmacy,
you can't hardly stand there, your hips are screaming at you, your feet hurt, your lower back is on fire and
you had to wear a bra in public and your very clothing is hurting your body.

Your friends and family get tired of waiting on you and doing things for you, they have busy lives to lead, why can't you lead yours!
They pull away from you and you are ALONE!
You go home and crawl into bed and you toss and turn trying to find a spot that doesn't hurt so you can rest.

When your spouse gets into bed, you realize you have stopped having sex, because you haven't felt sexual in a long time, due to side effects of your medication and it's painful when you to try to engage in intimate relations. You both now feel lonely.
Your spouse falls asleep in two minutes and you lie there, wide awake, tossing and turning due to pain and you
wait for your medication to kick in and offer you some kind of relief!

You fear all the medication you take will start harming your body, but you must have them to half way live some kind of life.
Your legs are jerking around, and you can't keep them still. You finally get to sleep, but you wake up at 2:00 a.m.
and you have to go to the bathroom because your irritable bowel syndrome has kicked up or you are having increased urinary frequency and urgency. You now feel a cold coming on because your immune system does not work well. You keep the cold for weeks instead of a few days. Now, the cold is a sinus infection or even pneumonia. Now, it's time to wake up your husband so he can take you into the ER, you have a major headache coming on and the pain is sitting at a 10+ and you need a shot.

You incur more and more medical debt, you can't pay your bills, you can't buy a home, you can't buy a car. You can't even get a credit card, you sinking deeper and deeper into debt, your life savings is gone form your illness and your husband's job losses. Your husband turns 50 and no one wants to hire him, but you still have a teen age daughter to raise at home, she still wants to eat, have a place to sleep, she wants clothes and education. You worry about your retirement, you lost your home, you have to rent, where will you go in your old age?? And, who will CARE.
Satan is at your back door and you feel God has forgotten you. You try and hang on to your faith, will this be the rest of your life, will you need up in a wheelchair? Will you end up on the street, what will you do if your husband divorces you and moves on with a women who can be there for him. Should you just end your life, should you just give up, but what about your daughter who is living with this, you can't let her down. You can't let her see you like this, but she has seen you suffer and she knows what is coming, she has already been there in pain and she knows that more is to come. She wonders what kind of life will she have, will she find a husband who will love her and understand or will she live alone, will she get to have a family, can she get through the pregnancy, will she be a good mother or a good wife, can she get through college so she can have a good job?? She really wonders.

Please don't make my child wonder if she can have a life and if she can make a difference in someone else's life. She wants to be a nurse to help others, but can she and for how long before she has to give in to Fibromyalgia.

Please vote for Bill S 424/H.R. 583 and any other bills that will help change the lives of millions of others that need your help. This could be you daughter or grandchild, please don't make us continue to wait for the next 100 years to suffer and to pass on that same suffering.

I have spent every dime trying to different doctors, different medications and all kinds of treatments. I have tried so hard to get my life back so that it could be half way normal. I live at doctor's offices, the staffs are my new friends. I am unable to work outside the home, I can't even work in my home. There are days I can't take a bath, I can't raise my arms! It's a sad state to be in and a drain on my family. I'd like to see more research being done for Fibromyalgia and not just lame research comparing us to normal people, but really more research on the nervous system and the brain. They do say that our MRI of our brains are different than normal people, I want to know why! And, what can we do about it. I really want to know what causes this illness, I want drug companies to become interested in our illness instead of taking medication that might help, that might work. I have entire drawer of drugs that didn't work that I bought and paid for that didn't do a thing!

I want to again thank you for your letter back to me and for your continued support and I urge you to vote for the Bill S. 424/H.R. 583. I would rather be a working citizen then one on disability.

Sincerely,

Freda Lovell

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