|Sep 27 2009|
For someone who doesn't work outside the home and am not able to do as much as I used to, I sure am busy and it feels like any extra activity must be penciled into an executive's desk planner! When will it all end? Not life as I know it, but the madness that's befallen my family during the last year (and continues). I need to get this off my chest. I express myself so much better through writing that I find myself here, nearly midnight, and after much contemplation. Not that some family issues are a huge secret here, but that at every turn I'm faced with more speed bumps than should be legal.
I've been to my daughter's and back (85 miles, one-way) so many times that I just turned my car over to her. It is the only thing of any significance I own outright (paid for with my initial SSDI check), but she needs it far worse than I.
My husband and I debated this due to our own health problems and the many doctor/lab/imaging appointments both of us have. I thought to myself about years past when families did get by on one vehicle. So I'd have to make a few adjustments to my medically-social calendar and scheduled appts on Fridays (when my husband is off), that shouldn't be hard right? Well, so far, we're making it work and to honest, it feels like the weight of the world has been lifted from my right shoulder. There's still plenty sitting on the left one.
I was in Ocala last Mon thru Wed for her court hearing (her incarcerated estranged husband is in jail on a VOP for Felony charge) because he violated her restraining order and well, his drug test didn't go as he'd hoped he'd get by with. After months of invalid addresses, he was finally picked up by the police and arrested when he arrived at his drug and alcohol meeting. I guess they have a good address on him now: the Marion County Jail and without bond. He threatened to shoot five rounds from an assault rifle into my daughter's apartment. This not only terrified her, but her children also. Little Alex...he's 6 going on 20...has autistic syndromes; and 9yo Sarah, who has questionable epileptic seizures (her pediatrician is dragging his feet on finding a neuro who will accept her medicaid coverage) are now ordered by the court to allow their father his parental rights to visitation. Neither Alex nor Sarah have EVER seen the inside of a jail before, and their therapists are attending the sentencing with my daughter and I on Oct. 27th (yes, I will be out of town again next month). She wants me there with her, and I am happy to oblige. She has no one else. Her biological father abandoned her long ago; my family lives in different states (other than her brother...and his story is just too exhausting to write about, let alone think about) and her father's family hasn't kept in touch with her in nearly 14 years. She is 31, looks 10 years older because of all the stress; the fact that she's sick (and getting no treatment...yet); but Sweet Jesus, she loves her babies and lives for them.
The economy hasn't helped much and the only job she's been blessed to find is washing dishes 3 nights a week at a little pizzeria/diner not too far from her home. She had been walking a total of 10 miles per day whle carrying a 20 lb. backpack for a little over a year. Her health began to decline and I couldn't stand the thought of her walking her kids to school in the rain (the county funding required that their bus route be eliminated, much to the protestations of the parents in the area); to the grocery store; and to doctor appts., med clinic, psyche appts for the kids, etc. She did this in the rain as well as the sun. Her body has worn itself very thin (no pun intended) and she's suffering the effects.
Her hbAIC has been 8.8 for since April this year; with her GFR ranging from 89.0 to 104+; elevated chloride levels of 117.0; and a TSH hanging onto the low-end of normal (recently) by its fingernails. It's been as low as .33. Her P.A. (the clinic is staffed with P.A.s to keep costs down) has not begun treating her; has twice "forgotten" to order retesting (for the fifth time) of her A1C (which has been 8.8 consistently, until just recently when magically, it was revealed "lab error"...really? Lab Corp is THAT bad??) I wonder. With the consisten out-of-range levels, together they indicate diabetes with kidney damage or disease, and an overactive thyroid gland. She is now down to 90 lbs. What was even more shocking: she's wearing double zero size jeans and has to cinch them with a belt to keep them up; her bras were way to big, so we did some shopping and found that she'd gone from a 36DD to a 32 B. She has no fat on her body and her skin puckers like that of a very old woman. Her face is drawn. Thank God her muscle tone is very good and very evidently seen, but I fear that her energy stores will start demanding payment from her muscle tissue.
After waiting for my BP to come down, I filed a formal quality of care complaint with Medicaid (this clinic is NOT licensed through the Agency for Healthcare Administration, though the PA's are) and will be contacting the AHCA to file a complaint for lack of treatment by her PA. He hasn't requested a followup appt. for her until Oct. 15th. Really, Doc? You think she can afford to wait any longer?
Anyway, Alex's father made his first visitation call and Alex refused to get on the phone with him, yelling at the top of his voice that "I don't want to speak to Frank" and slamming his bedroom door. I understand the hurt, disappointment and sense of abandonment (Frank didn't take care of his kids between jail stints and doesn't pay any attention to them until he's IN jail). Sarah didn't want to talk to him particularly, but said she did have one question to ask. She asked it and already knowing the answer herself (as she heard the comment made by him outside their apartment), told him he was lying to her and she knew it. These children are angry and it breaks my heart to see them in this pain. It's killing Bambi, too.
She's making 90 dollar a week and must pay the babysitter 60 dollars. She does get SSDI for Alex and that helps keep the roof over their head and hot water and AC turned on. As sad as this seems, Bambi fights with every fiber she has to give these kids a good, loving home. Those kids are her life and they are what give her strength.
She is still having to use her bi-pap and I had to call the company and hand them their tukases for not maintaining her machine (they weren't returning her calls). The day I called, they went out and took care of matters. They tried to tell me they had no good phone number for her, but the very gal that told me this is the very gal I GAVE Bambi's phone number to 2 months prior. She has severe sleep apnea.
We put two new front tires on the car last week and were lucky we weren't killed before doing so (and this is no stretch of the truth). She'd driven down to get me; we drove back to Ocala (again, 85 miles each way on a major interstate highway). After parking the car, I noticed what I thought to be shiny nails all over the front passenger and rear passenger tires. The sun was hitting them just right for the metal to reflect many sizeable glints of light. We noticed the car had been shimmying when we reached 70mph. Upon further inspection, it wasn't nails or any other road junk I was looking at; but the steel belt threads on both tires. It was over 90 degrees in Ocala that morning, but I suddenly felt very very cold. So did my daughter. I try not to relive that discovery but I'd be lying if I said it didn't haunt me.
so this week is the kids' first visit to the jail. Is it me or does it seem wrong for young children to be inside a jail for any reason? I know...even incarcerated parents have rights, but really...couldn't it be done with phone calls? C'mon now. Alex hasn't had a good day at school since Wednesday night, when Frank called. (The kids don't call him "dad" for obvious reasons). These littles ones were not nor ever will be "coached" as long as Bambi and I can keep it that way. Having worked in the Criminal Justice Center for years, I've seen too many cases and the ramifications of coaching a child's attitude toward a parent...good or bad. The results are never good. Sarah handled herself well, considering; and I believe Alex will come around and someday forgive his dad.
Then last week my husband's doctor noted that one of three tumors in his lungs had grown to 1.5cm and it was biopsied this past Friday. We won't know the results of that biopsy until sometime the middle of this week. Needless to say, I'm doing what I can to stay busy and listen to my iPod a lot when he's not here.
I'm taking my meds, doing what I can, and I am praying with every fiber of my being that this tumor can be easily treated; that it's not CA; and that I don't pull out all of my hair waiting for results. Thank God for two cats, two guinea pigs to feed and care for; for family to talk with when their voices I sorely need to hear now; for badly related jokes I tell my folks so they don't worry; for my baby sister who calls and says, "book a flight, I'm paying; you need a break." But what I thank God for is the strength in each and every member of my family...it's the glue that keeps us together, and the reason my support system is what it is.
I guess what I'm telling myself is this: "Don't worry about the dust bunnies in the corners of your life and appreciate the curves ahead.
Thank you, Sweet Jesus, for my life and my family.
I am back, but not up to snuff yet.
Sliding in to first base on a gravel ball diamond
Test results are in (saw PCP today)
The lupus is in a slow progression.
Sliding into 2009 and Already, I need a Nap!
God is great.
My daughter has cancer.
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