Yes, I'll take "Bloody Impossible" for the win

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Regular Member

Date Joined Dec 2010
Total Posts : 38
   Posted 12/16/2010 5:50 AM (GMT -6)   
Question: Born with no skin over the abdomen, organs crammed back in, organs now solidifying and attached to everything from the mid chest down through the pelvis, multiple surgeries, massive scar tissue, digestive disorders and constant abdominal pain. Now we introduce fibromyalgia and a surgical flare that will last approximately a year.

"What is the end of my life as I know it?"

You are correct! You win a trip to OHSU for further testing and get a great opportunity to be a lab rat for the rest of your natural life!! (Fine print: you will be held responsible to all fees unless you can prove you make less than it takes to afford a cardboard box)

I'm so freaking mad right now. I have been hurting my whole life and I have struggled and struggled to never give up and always keep going. I moved to Oregon, after a few yrs I started a daycare and am going to school to be a childbirth education teacher and doula for teen mothers. I can hardly take care of myself right now. I am in agonizing pain with any movement, hell to tell the truth I'm in horrid pain if I don't move at all. I thought I had just a few months to get over my last surgery in Sept now I'm looking at being in this much pain until next Sept at earliest (my dr. estimate). I have fought so hard to get into my farmhouse to have room for my kiddos to play, a community garden we were planning for our family, friends and daycare families, and to donate to the local food bank, and keep up in my classes so I can teach and support the mothers and families in my area. Now I don't know how to make it through today. Another month was doable but another yr is impossible, I just can't do this anymore. I hurt so bad I can't even think anymore. Everything is behind. My bf is living with me and has taken over my daycare and household duties but she can't do this for me forever. Am I supposed to just keep fighting or is this my final breaking point where I have to just give in and file disability? I have fought so hard to get here through all obstacles that have been put in my way but I'm tired, I'm hurting, I just can't hardly make myself do anything anymore because the pain is so bad that I just can't. What do I do? I will die of depression if I give it all up and I can't just take a break for a yr because I have used all of my funds, my families funds, everyone's funds just to keep me going to the dr. I can't get insurance, I make a bit to much for state help but I barely make my bills. This is just impossible. I have so much scar tissue that I must keep moving or face solidifying (not a death I want, if I get an option at all), the fibro makes exercise almost impossible hell exercise it makes normal life impossible right now. I just don't know what to do anymore.

Veteran Member

Date Joined Dec 2007
Total Posts : 1235
   Posted 12/16/2010 9:01 AM (GMT -6)   
No, you aren't supposed to give up, but filing for disability is not such a bad thing right now. And you can still go to school while getting it.
I understand your frustrations and angst but giving up is not the answer. I know that a year sounds like a long time, and it is but I have also had two surgeries where I had to wait two years each time to see what the final outcome would be.
Not moving is going to make the adhesions worsen. In fact, the more you move, the more painful it will be for awhile, but it should ease up once the adhesions are loosened.
I know that it is hard, we all do in fact, as we all face our own obstacles each day in getting up and trying to make it through yet another day of agonizing, unrelenting pain, but somehow we all do it.
You have a lot to fight for, all of your plans sound wonderful and inspiring, and I hope that they all come true for you. I was told long ago that anything worth having is worth fighting for, it seems to me that you have a lot to fight for . I believe that you have the strength to perservere and get through this time.
A friend once said that if thinking about getting through another day was too much, to take it one hour at a time and if that was too much, one minute at a time.
Make a plan, and find out what you can do to help yourself achieve all those wonderful plans . And enlist those that can help you to keep things going , and work hard each day to complete one goal at a time.
I know that this all seems so overwhelming , but you can and you will get through this year. I believe that with all of your dreams, you can make them happen.
I also believe that if you can find a way to keep moving, even if only for the next minute at a time, that you will do a lot to help the adhesions not be so bad.
I have read that excercise helps the fibromyalgia , so even if you can only do 5 minutes of excercise at a time, it is better than nothing. And enlist a good PM doctor to help you keep the pain at levels that allow you to function so that you can keep working toward your degree and your other dreams.
I'm sorry that you are struggling, I hope that this helps you, it is meant to.
Hang in there,

Veteran Member

Date Joined Jul 2009
Total Posts : 2042
   Posted 12/16/2010 12:09 PM (GMT -6)   
I, and most likely most members, can certainly understand your feelings and most of us probably have had days where we wonder where the strength will come from to make it through another one.

I know a year sounds like a long time but you can do it. All you have to do is stop thinking about making it that long and concentrate on making it one more day. Just take things day by day and before you know it that year will be here and gone.

I agree totally with mrmsm123 about filing for disability. I too think you should do it, and don't look at it as giving in or giving up. Look at it as a chance to lessen the stress and burdens and a chance to regroup. It does not mean you are giving up on your dreams, just putting them on temporary hold while you take care of yourself and your immediate needs.

As far as medical bills go have you checked with the hospital(s) and clinic(s) that you go to on their financial assistance programs? Around here the income limits are a lot higher than those for state medicaid and may be in your area too.

Hang in there. You can do it.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Veteran Member

Date Joined Aug 2006
Total Posts : 9664
   Posted 12/16/2010 3:50 PM (GMT -6)   
Please, don't give up on your dreams, file for the disability, what mrsm/Sandi and Jim have
said, which is good advice, so look into getting disability.
Healing Hugz and Prayers
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...


Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 12/16/2010 8:07 PM (GMT -6)   
I would file for disability then go to school as you can.
So sorry for your struggles.

Regular Member

Date Joined Dec 2010
Total Posts : 38
   Posted 12/16/2010 8:41 PM (GMT -6)   
Thank you all for your kind words. This has been so hard to make these choices because I cannot have both. If I file for disability then I lose my home, daycare, and space to teach my classes. I get great help from OHSU so far as treatment goes but I still don't qualify for my specialist in town, my massage therapist, and my medication. If I lose the house because I admit that I cannot work anymore then I cannot keep the kids I've got in my daycare if I must move to a smaller place. I can keep one or two to help with the rent and the income shouldn't affect filing for disability because the actual income would be so low. Then in a smaller place I would have to move back into town where it is more humid and I freeze and hurt even more. We can't move because my husbands work is here and it's specialized so there is really no where else to go that would be better. Then I also lose the garden which would improve my diet (I'm very careful about what I eat and if I don't maintain it I get worst but it's hella expensive to eat right), lessen my grocery bill and also provide for the families around me. All the facts point to staying here and toughing it out but I am to the point I am almost physically unable to keep this life up and my bf cannot do this forever and cannot take it all into her name because she has a special needs son and she would lose her coverage for him if she added any income. Without the income though we couldn't live, we are very frugal as it is and just buy basics, I am very good at budgeting and manage to make it all work sooner or later with some help here and there from family and friends but I still can't qualify for any help and all my medical needs are not being met but if I could get my medical I might be able to function well enough to keep this all going and turn into a non-profit in the future to be eligible for grants because right now we operate at a loss just to stay open to the families that need us. Its a very impossible puzzle to figure out. I just can't see how the universe just won't let me have a break since I'm honestly just fulfilling my labor of love and offering my life in service to others. Today my husband got bumped to part time and then gets laid off at the end of the month. I need 2 more kids in daycare but the families around me are losing state funding and can't afford to come even though we are only charging the state minimum so they were fully covered besides co-pay and I can't cut any more because we are not paying the bills as it is. I'm the lowest rate in the county, we are very needed just my families are struggling too and are getting no help either. Plus the kids are what keeps me going, my reason to smile, my reason to fight.

thank you for listening and letting me talk it out, sometimes that helps new ideas come to the surface. I am entirely open to ideas, suggestions, or just the chance to realize that I'm doing the best that I can and there was nothing I didn't try before I lose it all.
“Maybe if I share the path I walk then a little more of your pain will vanish. I want you to heal, whoever you are. I don't care what pain you've brought the world, I just want yours to subside. No matter what, your path is yours. Dont follow misery or worry. Devote every moment of your life to improving your dreams. Love your world. Cherish the good you do. Let go of hatred. Dream of love.” ~ ?

Veteran Member

Date Joined Jan 2010
Total Posts : 1097
   Posted 12/17/2010 12:32 AM (GMT -6)   
I don't know if this is even a viable solution, but would publicizing what you're going through be helpful at all? What about a fundraiser? I mean, if you were to contact your local newspaper or TV Station and tell them about everything you've created and how it may all be lost because of your health, maybe someone out there has the money or the interest or the desire to come along side of you and help.

I know it sounds like a desperate solution, but I think that's where you're at right now...and only desperation is going to save you. I wish I could come up with a more brilliant suggestion, but it's the best I can do.

I will pray for you, that the answers to all your questions about what to do will be made clear to you. I'll be praying for strength and courage and energy for you, and for healing for your body.

Just remember, no matter what happens, if you can look yourself in the mirror and say that you honestly did everything you possibly could to keep this going, then that's a success in my eyes, and you walk away with knowing you did your very best.

DX: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain, Surgical Adhesions, IBS, IC-PBS, Carpal Tunnel (both wrists), FAI, Diabetes, Reynauds, Opthalmic Migraines, Drug Related Hot Flashes, Hard Start for IV's, Unable to vomit due to surgery.

Meds: Oxycontin, Tramacet, Cymbalta, Cesamet, Flexeril, Clonidine + Vitamin D + Multi daily

Forum Moderator

Date Joined Feb 2003
Total Posts : 16796
   Posted 12/17/2010 11:56 AM (GMT -6)   
UD yes you do have a lot on your plate no doubt you are overwhelmed. This is something that us CPer's seem to get bogged down with sometimes. Never give up a dream, one of our ladies on here has suffered terribly for years and fought lots of battles along the way, her dream was to go to vet school. Vet school is an extremely hard school to get into, the grades have to be exceptional and they only accept so many. She held fast to her dream and yes she ill be going to vet school.

I don't know, perhaps sitting down and putting everything in writing and trying to deal with the top priority stuff first may help. Right now it seems like everything is going into 50 different directions for you. Another thing is don't try to take on more than you can handle, never set yourself up. I know none of this is a solution just an idea or two. I also know that my pain has to be under some type of control or else I am not good at anything and get very little accomplished along the way.. You will find it this way for most of us here.

I do hope you can get all of this worked out and soon.
Moderator Chronic Pain Forum

Monty's Mom
Veteran Member

Date Joined Aug 2010
Total Posts : 664
   Posted 12/17/2010 12:25 PM (GMT -6)   
It is odd that we are in the same emotional place at this time. Thank you for posting this and helping me work through my issues also.
I am at the point where taking disability seems like such a bad thing. People will look down on me and it makes me a burden to everyone as well as my family. Someone told me today that no one but myself and my fiance need to know. Why do other people need to know where my money comes from? Disability, my great fiance, Mary Kay, or the money fairy in the sky? WHen asked simply say that I am blessed enough to be a homemaker.
Whatever happened to a woman staying home with her family? Why do women have to work if their significant other works and they can afford their home? Or, in many of our cases, are too disabled to work and receive help. That is why we pay taxes so that when this happens we can have help.
Hang in there undetermined. You are not alone.
Again thank you for posting.
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