Divorced mom of 2 of the most awesome children anyone could dream up! Diagnosed with liver disease in 2000 and separated a year later, I've been working very hard to learn different ways to take care of myself and keep myself as well and functional as possible while raising my children to be strong, independent individuals.
I hate asking anyone for help and as wealthy as my family are, they will not do anything for anyone. I have a sister that donates thousands of dollars to help others, but will not help family, a dad that only thinks he has one daughter when he has 3 and grandparents and aunts and uncles who donate scholarships and oodles of money to others, but just don't value family (unless, of course, you're as wealthy as them and want to take them to brunch). It's as if it's all about clout, not the actual giving. When I was well, I helped so many people. I let people live in my home, helped people get off drugs, gave food and money. I helped people with Christmas gifts for their children. I volunteered and donated my time for people not even looking for volunteers. I've always tried to help the people around me. I have always been the one people call at 3am when they're upset or been through a loss. Why is it that when my life turns upside-down, everyone who called themselves a friend disappears?
I worked very hard after high school to put myself through college and worked my way up the ladder in business to a management lvl position in a medical clinic. When they found out I was sick, they attempted to force my resignation, than when I refused, they called me into a room with 6 bosses and a company attorney and fired me. I had never even missed a day of work. That was 3 years ago and since, cannot find a position that I can actually function with. Who wants an employee that comes in late or has to leave early or just has to stop working every so often to rest? Who wants an employee that can do the work some days and not others? I type 80 wpm, but only for a couple hours a day, than my fingers hurt too badly. I have the ability to do so much, but can't. It's so frustrating. And if I do feel good and go out on a limb and do extra while I can, than I suffer so badly later for it and can't even move the part of my body I used. Sometimes it's non-stop pain, sometimes it's intermittant, but the fatigue and mood swings are intense all the time.
Since my initial dx of liver disease in 2000, I have also been diagnosed with Hashimoto's thyroid disease, seronegative arthritis, fibromyalgia, bp disorder and a list of other nasties that alone would put any normal person in bed. I'm not quite sure of the bp disorder. I think my mood swings are due to the fact that I'm so sick all the time....not some organic or chemical illness. I've been through hell and had to find ways to deal with my emotional state. I don't want to be down, so I think I try and "act as if" I'm okay, but than when I can't, I appear to be having mood swings.
But I have children that need me. Unfortunately, at 12 and 15, I feel like I need them more now. They are amazing. My daughter is a gymnast and cheerleader with aspirations to be a pediatrician someday. My son is in ROTC, football and German club and is just an amazing chef!
I continue to try to work. The position I currently have started at 40 hrs a week and has dwindled to 16 hrs now. I do merchandising which allows me to schedule myself and work at my own pace. Sometimes, even skimping by doing very little. The job is a blessing, although I'm able to work so little now that it doesn't help much anymore. I'm becoming scared. I've even had this boss tell me to "take some time off" recently, which in my experience means something more like, we're getting ready to fire you.
My doctors don't want me to work at all, but I always joke "Doc, we live in different worlds" when they tell me to quit and apply for SSI. I know the drill with Social Security. You apply, get denied and than fight tooth and nail for however long until you have nothing left but the shoes on your feet. Even then, you're lucky to be considered disabled.
I'm so sick all the time. I try to explain to people the feeling of having the worst flu and hangover all in one every single day. I feel like I have no where to turn. I'm scared to lose my children if I can't afford to take care of them. As it is, I'm so far in debt from medical bills, I couldn't get help from anywhere if I tried, and there are warrants out for my arrest because I can't pay medical bills or make it to the hearings. Even if I could make it to those hearings I probably wouldn't....Why?? So they can garnish the little bit of money I do have coming in?!!! Who came up with the law that if you can't pay, you either come to court to allow garnishment, or go to jail for contempt and have to pay the amount of the bill to get out??? It's ridiculous. If I could pay my bills I would. I did when I could. I've never even had a credit card. I don't abuse credit.
I'm currently fighting for disability Medicaid to pay my medical bills and prescriptions. I try to explain that without my medications, I can't work, but without Medicaid I can't get my medication and see my doctor, but it doesn't work like that. I suppose they will end up reevaluating me when I'm totally incapacitated and homeless because that's where it appears to be going. If I end up denied, the medical care will cease and I will not be able to function at all.
I'm really scared and desperate. I need help, but I don't even know where to turn anymore. I have approximately 6 hours a day where I feel semi-normal. I still have the pain and fatigue, but I can work through it. Usually about 3 hours in the morning and 3 in the later afternoon, than I'm done. My body wakes me up between 4 and 5am and I'm done by noon. Like I'm 85, not 35.
If I can't take care of my children and have to live in agony constantly, what's the point to living at all? My children are my life. I can deal with being sick if I have their smiles to drive me on. I'm so tired. I'm just so tired and I can't do this anymore. In my eyes, family is all there is. If I can't have mine, than what's the point?
Legal help? Financial help? It all seems so temporary, but what else is there? Like a temporary fix to a permanent, ongoing problem. I'm beginning to understand why people went to Dr. Kevorkian. Quality of life is everything and when the scale of suffering tips too far on the side of agony and less and less on the side of joy, what's left?
So whatever help can be given, please, please think of us. We are grateful for anything and everything.
