Too much to bare
by, 12-08-2010 at 05:51 PM (1186 Views)
I am not frantic anymore or fighting to find the answer to all the questions about Lupus. Perhaps the best way to describe my feelings are, "I give up." I'm worn out from fighting with the doctors and waiting on the blood tests. I'm exhausted from trying to explain a condition to people who don't even believe I have the condition. I have no way to move things along when it comes to disability so I'll probably end up living with my parents. I love them but the blend of their family and ours is essentially the ingrediants for the A bomb. For over 20 years I've run my life. If I can't put the brakes on this oncoming disaster, I will be forced to regress to a 15 year old child who must okay every movement and explain every decision. But then, my brain seems to have died sometime about three weeks ago so maybe it won't be such a bad thing.
Family Services is forcing me to see a psychiatrist before considering me for medicaid and I will definitely let this person know that I am truly hanging by my last, fraying nerve. Is my mental health strong -- NO! Would I prefer to stay in bed and sleep 24/7, yes. I have stacks and stacks of medical bills and before long I will be two months behind in my house payments. This is the house I've lived in for 20 years. The house I brought my son to when he was just born. But I can't take care of it anymore. The leaves have taken over and the tree out back may fall in through the roof at any moment. I need to find somewhere smaller that doesn't require upkeep. But I can't pack up the house. I can barely vaccum.
I was back at the doctor's office again yesterday. I just love my pcp. He seems to "get it" when I say how tired I am. I believe I will call the social worker/case worker tomorrow and see if they have any suggestions. I would like to begin calling my congressman but my voice is essentially a thing of the past. I can barely talk anymore and I run out of air when I try. I see my lung doctor on Friday and I have hope that maybe he can make suggestions. He's moving to Kansas City so he won't exactly be invested in my care but maybe he'll have ideas to pass on to the next doctor.
There's something very wrong with my health. I know this without a doubt. I've never felt this weak, or so sore, or so helpless. My father, who I love so very much, wants me to figure this out. Why did it start when it did? What started it? Am I allergic to something (i.e., my cats which I've had since birth). My mom wants me to stop driving and have my dad take me everywhere. Sweet thought, but I can still drive. They know my brain isn't working well anymore and I'm sure it scares them to death. Me too, for that matter.
Depression has settled in very deeply though I fight it with every grain of strength I have left. I will not leave my son to fend for himself if I have I have "go away" for awhile (mental ward). Though it sounds like heaven. The idea of not having to fret over every detail that goes with disability or try to explain to my parents that while my blood work may not show Lupus, the symptoms quite literally override that aspect of the conclusion. It would be a vacation from having to explain myself at every turn. Again, thank goodness for my pcp. He hears the barking cough and sees the swelling from head to toe. He doesn't know if it's Lupus but at least he doesn't pretend to be sure one way or another.
Take care folks and my apologies for the long-winded, sad-song version of my life right now. I have to get it out or I cannot guarantee what would happen next. I do understand why people prefer death over life in these situations. Why do people expect you to explain why you feel the way you do when you have no idea yourself! My father wants to know why this started so suddenly. Because you don't get special notices when your life is about to be turned over on it's head! I've had to literally ask to end a conversation because I simply can no longer breath and while it should be obvious, apparently it's not.
I will leave things at that. Hopefully my next blog will be more cheery. God bless to all.