Here some suggested organisations that offer expert advice on SN.
Breathe in, breathe out... repeat...(9 Posts)
The stress level here is sky high, and in typical BeeMom fashion, I am hiding it from everybody but the pillow. I haven't slept more than 2 consecutive hours in weeks.
As you may remember, DH lost his job at the beginning of last week - along with it, he lost his medical benefits, which means that some of Bee's most important medications are no longer available to us. 2 of the most important (ondansetron and levetiracetam) would set us back about $2000 per refill, or the total amount of our average monthly rent and utilities. Without DH working (and frankly, even with him working in the absence of benefits) this is totally impossible for us. Between that, Bee's dressing and medical supplies, nappies, and on and on through the costs that come with a child like Bee, we are in trouble.
As well, Dh's employer is screwing him. According to employment legislation in our province, when an employee is released without notice, any monies owing to them (pay in lieu of notice - in his case, 2 weeks' worth, commissions - they owe him 4 month's worth of commissions - 2% of his branch's total sales and all accrued vacation pay - they gave him only about 60% of what he has accrued over the last year and a half) have to be in their hands within 7 days. Not surprisingly, this has not happened... and so he is going to have to go hammer and tongs with them to get it - or involve the Labour Board on his behalf.
DS is struggling at school. He was identified gifted years ago and was placed in all enriched classes this year. He is doing OK in things with practical applications (tech, science) but his math teacher seems to think that gifted kids don't actually have to be "taught" and learn by osmosis. French is boring and English is moving too slowly for him (he has Midsummer Night's Dream finished in the first week it was assigned) but all in all, he is drifting. I know that the pressures at home are definitely adding to it all, as well - I wish there was a way to separate him from the stress...
Bee is Bee... same stresses as usual, plus a big increase in the "little" things - seizures, challenging behaviours, wicked sleep problems. She has not slept past 3 am in weeks, and it seems I am feeling it far more than she is. Today is her annual review at school - I don't know how it'll all play out, there are a lot of things to cover. I'll likely share that portion of it tonight...
I am facing some health issues of my own - a hefty reminder that putting my needs on a back shelf to care for the family was not the best choice I could have made. There is a very strong family history of reproductive cancers in my family, and I am waiting for biopsy results on samples that were removed on an emergency basis a couple of weeks ago. Not only that, I need to get my blood pressure under control - it is very high (another depth charge in my genetic material). Sadly, with the loss of DH's benefits, also comes the loss of funds for medication.
So, for now, all I need to worry about is keeping a roof over our heads, helping DH fight his battles (he would sit idly by if he was given the chance) and trying to keep everyone as healthy as possible. Thanks for giving me a safe place to be able to vent and unload when things are just a bit too much to keep inside - sorry it got so long.
Oh, and breathing... I need to try to remember to do that, too.
Oh dear, BeeMom, you are having a difficult time. Are you in USA? Loss of health insurance sounds dreadful. Can't do much but hold your hand.
We are in Canada. Fortunately, that means that Bee can still see doctors and use the services of the hospital without us fearing the loss of our home, but things like her AFOs (which she needs replaced), wheelchair batteries, many medications and therapies (OT, PT, SLT) are not covered unless she is inpatient. She has a benefit called "Assistance for Children with Severe Disabilities" that covers some of her medications, but there are others that are not covered under any circumstances.
I just have to remind myself that it could be so much worse, too...
Small mercies, I suppose. However much we criticise the NHS in this country for its inefficiency and very slow actions, at least it isn't dependent on where you work. (((hugs)))
BeeMom there is not much I can say when there are so many problems for you though I can sympathize re the lack of sleep. Actually makes my 4 hours a night seem luxourious.
I hope the biopsy results for you are ok. It is so easy to go on thinking you yourself are invincible because you just have to be.
We have similar issues with the health care system moving at the speed of smell... for example, Bee needs a sleep study. The wait list for it currently is sitting at about 2 years in our area (well, not in our area, we have to travel 450km to get to it). MRI waits are in excess of 6 months, "elective" surgery can be even higher.
Dental care is not covered, vision and hearing tests... and the list goes on. They used to be.
Costs for all of these things are going up (as people's pay and operating costs go up) but no one wants to increase taxes accordingly, so instead they make cuts to service and increases to wait times. It is a vicious cycle.
Oo, the speed of smell! I like that.
We use the generic form of all drugs - here the ondansetron and Keppra in generic are still stupid expensive (I will never understand what the massive variation in cost between countries is based on). We also use tablets for everything, so we have the benefit of not paying for compounding.
Bee's meeting went well, and I took a moment to talk with a SW in the Family Services office (her school is in a pediatric rehab centre, so basically everything is available to us). She said there is one drug plan that might help the rest of the family, and called Bee's GP to inquire about "section 8" coverage for the Keppra. The GP wants to see us next week, so hopefully we can make some headway. The one blessing in all this from a med perspective is that I refilled 3 months' worth of meds for Bee about 2 days before she went inpatient... so I still have about 2 months to work this out.
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