Tag Archives: healthcare

Stay of Execution

21 Mar

This feels like a stay of execution.

This busted body is fading fast, but now maybe it can get the care it needs to stick around a little while more and advocate for my kid and his special needs.

Grateful.

xo

Bek

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Thirty nine minutes until midnight….

14 Jan

Just Keep Swimming.....

It’s almost midnight.  1 hour and 32 minutes and our health insurance expires.

I’m not irresponsible.  Really. If anything I’m too responsible.

I have faith that my husband will be approved for an individual plan and that my son will be approved for the care he needs, but it is taking some time.

The next time I will be covered for medical care will be July of this year.

I’m terrified.

I feel the countdown in my veins the way I felt the anticipation of the feeling of falling –that gut in your throat verge of crapping your shorts feeling of falling- when I jumped almost three stories into the azure Caribbean bay almost 10 years ago. 10 years ago.  My body was healthy and strong. Complex in it’s nuances, but nowhere near as damaged as it is now.

1 hour 28 minutes.

I am without medical insurance because I did the right thing. I called customer service two years ago and again eighteen months ago and asked questions to make sure I understood the material, so nothing could possibly go wrong.  Unfortunately, customer service has, as it turns out, less of a grasp on the materials than I do.  The agency has concocted it’s own definition of one small word that is worlds apart from any other definition.  And it is that discrepancy that leaves me wondering what will happen to this broken body in the next six and a half months.

I paid $2000 per month for COBRA + copays for the three of us.  Because of this, I have to wait. F&$% being responsible. I could have just said screw it and lapsed and the boys may have qualified for medical care (better medical care than under our COBRA plan- at least for kiddo’s autism related OT and language therapy). But putting kiddo at risk of not having coverage, and risking spouse being unable to find a plan because of a pre-existing condition, was not an option.  And we couldn’t risk me going over to the medicare plan I had turned down due to group/employer coverage under spouse’s job because medicare was out of our financial means-more so than $2000 for COBRA and copays (or $750-$1000/month which is my share of that expense).  (Yes, you read that right-medicare more expensive out of pocket than COBRA/private coverage. I’ll share my comparison chart here once I update it.)  So for my forty five minutes on hold, I got an incorrect answer. And now the costs could be a burden until I die. Perhaps even longer.

I don’t even get my 45 minutes back to spend with my kid.

I am furious. I am sad. I feel, like my broken body has been pulling me away from my little boy since I got sick and now somebody who was completely incompetent in their work is pulling me away from that sweet child even more.  And I’m furious at the economy and the spouse playing Spore while I sweat and struggle to make sure everyone else is taken care of.  I want someone to share the energy and the drive for something better, for providing for our child, to share the load and the burden so I don’t have to be buried faster.

I want someone to say “Hey, I’m here. Slow down. We can do this together. We are in this together.  I won’t stop to rest while you carry on with your broken back and your unbalanced and heavy load. We’ll carry it together and then we can sit back and enjoy the world together.”

1 hour 14 minutes.

I warned my family last night, “If you are going to get sick do it tomorrow”.

I feel like there should be fireworks.

Or some sort of fanfare.

Or maybe we should have juggled knives or eaten fire or something before the 24 hour countdown to this particular midnight.

But regular activities, the danger of everyday things looms over me for the next 6.5 months.  On top of my already dysfunctional body. My personal time bomb.

My quest for answers about my newer inflammation – in my chestwall, my ribs, my joints, the inside of my eyes, the growth in my sinuses- is paused.  But the discomfort persists. It’s not white hot pain and pressure like my busted and deformed spine.  It is a deep ache when I move, like I feel asleep (in my pasty whiteness) on the beach for hours… My fingers, my knees, my ankles, my feet, my elbows, and my ribs feel like that sunburn pulling raw skin taut. But there is no aloe. And the pain meds don’t relieve it and I’m allergic to NSAIDS.  And it feels like pneumonia too, but it isn’t, it’s just the inflammation in the cartilage of the ribs.

This on top of osteoarthritis, and Type 1/Juvenile Diabetes, and a laundry list of other things. And I’m just so exhausted and I haven’t had a day off in almost 7 years.

So I’ll wait. And I’ll sleep. And I’ll hope. And I’ll sleep when kid is at school. And I am realizing how many things I do in a given day, even when mostly bedridden, that under these circumstance, could be risky.  And I can’t afford that.

I will have to make what art I can without flame, without grinding equipment.

For six and a half months.

58 minutes left.

I only hope that I make it through.  When I come out at the other end, I hope I will have moved on, but I can never forgive the time lost, that belonged to my sweet little boy.

54 minutes.  If I’m going to get sick, I had better do it soon.

My dark humor is coming in handy during this challenging (read: totally miserable and f’d up) time.

Things that occurred to me:

If I’m going to off myself, I had better succeed.  Oh well, 50 minutes left, surely any attempts to resuscitate me would fall after midnight, and no coverage and I know 911 and the hospital do not have a money back guarantee.

To paraphrase Dorothy Parker:

I might as well live.

The other thought I have:

That this is an opportunity to test some alternative (at home, dietary and physical therapy) ideas regarding my bone and joint pain.  Nothing risky, but perhaps I’ll track my personal routine changes here, as well as the results and the costs….

And to top it all off, school wants to put kiddo in 1st grade NOW. More on that tomorrow.

I think I am rapidly becoming exempt from managing all of this with any grace.

My smother calling to complain how I don’t bother to bring Alex to visit her or have coffee will seriously put me way over the edge. How far over the edge?  Like point of no return over the edge.

Please, nobody test this.

I have 44 minutes left. Perhaps I should shower now, so I won’t risk falling in the morning, when my coverage is nil.

I am a bit grateful that I accidentally ordered a refrigerator size box of bubble wrap from Amazon.com.  I’m thinking that a suit of bubble wrap and a helmet would be a good start for me.

Anyway, hugs all around.

Xo

B

41 minutes to midnight…..

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McCain’s Choice of Writing Implement.

15 Oct

“I should use a pencil. No, doesn’t feel right. Pencils can be erased. I voted against pencils in 2003. When Senator Obama was a third grader he used a pencil….
I should use a pen. Yes. Joe Plumber uses a pen to write his estimates and handwritten receipts when he is fixing soccer….um… SoccerGrandma’s pipes. There is nothing more permanent then a pen. Soccer. What would a groundbreaking individual write with. David Beckham writes with a sharpie. I have seen the commercials on the seat back TV during my many flights to many foreign places. Obama has never been to any foreign place. Where was I? Beckham. Sharpie. I’ll write with a sharpie. I’ll hold it so the name is visible to Joe Plumber at home. It says non-toxic. It’s a health product. All American’s are healthy. Sharpie. That’s it. It’s permanent. It’s bold. It’s the maver….best darn tootin’ pen Mrs. Sally Beauty Supply would want.”

(ok. my monologues tend to be lengthy…but maybe I’m just bitter because my health insurance  does cost $17,400/year (for a family of 3) because of my pre-existing, non-preventable condition….)

**Please note that none of this was really said (to my knowledge) by anyone, except me.  Of course there is the monkeys and typewriters in a room theory, but they tend to have less scattered thoughts than I do.  This is opinion, it is mine.**

Wii Fit.

21 May

Yes. I did it. I preordered the Wii Fit from Amazon a few weeks/months (who can remember?) ago and it arrived today.

While I do need to lose weight and get my overall health and fitness into much better order, I find it hard to stay motivated while dealing with all of the kid issues (a “normal” person would be exhausted after all of the therapy/activity stuff) and my bone, muscle, endocrine, pain, and general malaise and fatigue. I have a doctor who barely looks at me when I come in his office- it’s not just me, I’m 99% sure he does this with all of his patients. It’s like he’s a librarian of my medical stuff and can access it and then he can pull other information for suggestions- but he is very by the book. I had a horrible experience taking statin meds but he insisted I try them to lower my (then slightly elevated) cholesterol. Found out that Statins and NSAIDS have the same response with me: swelling of extremities (I’m not talking pre-period bloating, I’m talking totally deformed swollen…causing stretchmarks amount of swelling) and everything gets stiff and it feels like I am walking through molasses…Even like my jaw has cold molasses in it. And I couldn’t stay awake. I was scared to be home alone with my little guy (he wasn’t in school yet). But because statins seem to beget lower labs, damn the side effects full speed ahead I swear he probably has every patient in this city that has either numbers that are below (in the ones where they are supposed to be below) the ideal by less than 20 points and every patient who may or may not be at risk from other health issues and genetics on statins. So I have refused statins. We tried a couple, all had the same reaction and I cannot function like that. So I told him I was going to take 6 months to lower my cholesterol on my own and if that didn’t work I would try another cholesterol medication. Guess what? My overall number dropped 100 points…All of the other numbers are where they should be and I was so looking forward to that call from his nurse last month to just hear her say “ok, see you in three months”

But once again: “Dr. Xyz wants you to start on vytorin again. He said that you mentioned that the side effects were difficult to manage but he feels the benefits outweigh that.”

Benefits outweigh the side effects? My numbers are better than perfect. Another doc even said “wow, your labs are better than mine and I don’t have all of these issues”. I have been working my butt off.

For what, for just in case? Adding a med with the side effect of me not being able to process information, speak, walk, talk, and in general be an interactive human being at even a basic level? No freaking way.

Anyway. So this doc is also the king of spitting information out without considering the patient. Most of the docs down here in Florida seem to be of the “one size fits all” approach (not meaning physical size, just treatment of medical issues/disorders/diseases/etc in general) . So I have damage to my spine that is getting worse (long long long story that I will entertain you with next week if I remember)… I had a tumor that gave me osteoporosis, ulcers, and a whole slew of other things. I have muscle spasms (freakishly giant charlie horses that kick the shidoobie out of me multiple times a day). I tell the doc that I am trying to walk more, take extra steps, etc… when I can because being sedentary is not the answer (my body is old at 32. like really old. like so old that I watch tv where people are complaining about crows feet at 32 and I want to blow the TV set up, but I really don’t have the strength and energy to move it to a safer location and it is one of those light weight and small ones) and that I want to do something to feel better in this medical freak body. I feel like I’m on the right path… I’m seeing better glucose readings and clearly my cholesterol has dropped but then he drops his prerecorded message.

“You need to exercise for 45 minutes, x number of days a week”

The prescription.

I refer to this as the last prescription.

Because I have heard this many times. Because I believe that starting parameters such as this are overwhelming to Joe and Jill Average who have a couple of kids, both work full time and they are caring for an elderly parent (general scenario)… I’m disabled- my body is freaking beaten by time and arthritis and being in the wrong place at the wrong time- I do get out of bed everyday but it takes 10 minutes to get to my feet and start walking. I have days where I can only shuffle to the microwave to heat a heatpack. 45 minutes of anything pretty much doesn’t happen.

45 minutes is too much for many people- it’s a giant chunk of time in an over-scheduled world. I’m not saying that there is anything bad about 30 or 45 minutes of exercise – I am hoping to get there some day.

But until I adopted the idea of taking baby steps and using quantitative measurement of my progress (I use a step counter daily and try to increase daily) and setting reasonable goals within a reasonable amount of time- goals that I knew I would have to work hard for but that weren’t crazy like “drop 100 lbs in 1 month” stuff; until that moment that I realized that something is better than nothing and I own this, then that was the starting point for me getting healthy.

Anyway, back to the Wii Fit. I really like that it takes different measurements of different skills and charts progress. It gives you the option of setting goals. It tracks your time. I just got lost in it (while I was setting it up before kid gets home so he can try it- I think it will be helpful on an OT/PT level with improving his and my balance) for 18 minutes. For 18 minutes I worked on my posture and balance and didn’t notice that the time had gone by. I have been sick for the past 2 weeks (on top of the regular physical stuff) so 18 minutes, in my book, is a huge step in the right direction from 0 minutes for the past couple of weeks (in total) ….

The activities are fun and look simple enough…Maybe for Average Joe they are… Not so much for me… But I could see little blips of improvement and especially with the balance games I found it had a nice blend of body vs. brain that most other games don’t offer… The balance controls, the way the wii fit platform interprets your movements is pretty cool and, at least for me, seamless. It’s fine control in some activities. I was a bit skeptical that the platform would wind up being like DDR -but the precision is crazy and unlike our DDR mat on the carpeting you don’t need to stomp- and actually I’m finding that there is a bit of a learning curve with the Wii Fit platform because I’m not used to not having to do anything with my hands and a controller to make the characters on the screen react. And my brain is saying “don’t stomp! you don’t need to stomp!”…

Anyway, the message is: something is better than nothing, set goals- set them in reasonable bits- attainable but will require work, and not so long term that it’s hard to see the reward…. Also if your doc really isn’t listening (I’m not talking about disagreeing, I mean doesn’t make eye contact…Suggests menopause treatments and you are a dude- that sort of thing…) Then get another one. Listen to your body. Figure out what motivates you or what is accessible to you. I have ADD- even if my body could, my brain can’t do anything for more than a few minutes at a time, so variety is the spice of life for me… Learn the tricks that move you and work with them.

And stay tuned for more updates on my Wii Fit experience…

Impressions right now:

easy to use and for all ages (although stepping on the platform to get his initial info is proving challenging to my little guy…placing him on it seems to work but just annoys him :-)

-all fitness levels, but may require modification – leaves this up to user…

-running game is pretty neat- you can really go at your own pace and if you go to fast the mii trips and falls over and it reminds you to not exceed your personal limits… Also tells you that a steady pace is best (so not for windsprints at this level, not that I am in any shape to do them)….

-Soccer balance game is neat- you head the soccer ball and try to avoid flying shoes and panda bear heads (that look like soccer balls from far away)…Really like the brain/body/reaction concept… Warning: people under 20 and anyone who likes the type of humor along the lines of The Stooges will probably enjoy heading flying cleats for a few rounds (until they realize they are losing points each time)…

-some exercises may not be possible for some folks due to health issues/injury and people really need to listen to their bodies… The tree pose wants the foot on the inner thigh- I have a busted hip so that is not going to happen any time soon… I wish they did have modifications especially for those with injuries or other health issues/precautions or just plain beginners….

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