Tag Archives: medicine

A Letter to Patients With Chronic Disease…

18 Aug

I think this blog entry, from distractible.org, offers an interesting perspective… Food for thought for those of us living with chronic illness and food for thought to everyone in the medical profession who may come in contact with PEOPLE with chronic illness.  I do suggest that folks who think that those of us with chronic illness are just negative and whiny, especially about the medical profession, read the comments after the letter from Dr. Rob.

Be sure to add your comment there, or here. That is totally up to you, my dearies :-)

Here’s the link:

A Letter to Patients With Chronic Disease.

xo

Bek

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Ch-ch-ch-changes…

26 Jun

Lots of changes happening in our little world right now…

thankfully baldguy has been asked to stay at his job for a couple more weeks to help transition one of the clients so that worry can get pushed away for more immediate concerns and changes…

Boy just does not transition well…The kid needs consistency…Yesterday I found out his teacher had been let go.  The two aides/teachers who work in his classroom are wonderful, but they are very different.  Over the past year I have been able to tell when his head teacher was out for the day by his behavior and attitude at home afterwards.  Transitions like this set him back so far.  We try to prepare and help him, but in this case he was told his beloved teacher was out on vacation last week… and Boy is home sick so far this week so I don’t even know if they have left a note in our box.   So there was no warning…No ability to help him transition by saying “see you later”… This could set him back months.  Gahhhhhhhh!

and he’s sick.  Kid on cough syrup (and they did not have any dye free cough syrup at walgreens yesterday) with a hefty dose of red dye #40.  No wonder my hair is falling out in handfulls this week.  He is crazed.  He is the kind of crazed that you see on Cops and zombie movies- hyper and lashing out, mumbling incoherently, shouting nonsense, utterly pantsless.   We see his ADHD most of the time and we have adjusted and it is only some of the time that he doesn’t self-sooth these days, but this week has been like living with an angry, illogical, drug addled strung out little man.  He is usually our family safety officer.  He will often request backup if I am plugging something in (because you always need to have a grown up buddy when doing things like that) and has frequently declared that plugging anything in must wait until daddy gets home… Yesterday, in his whirlwind he plugged the radio in by himself (during a huge thunderstorm)…This morning he found the one roll of film in our home and unwound it completely…I may completely lose my last marble in the coming weeks…

Anyway. Just home with boy trying to keep him out of trouble.  His ADHD in this sick and cough syrup addled state and my ADD (completely and utterly without the H) are extremely incompatible and frustration runs deep in both of us.

Ok. Enough of my babble. He is “watching” a CD on my TV.  He likes to watch the numbers count down.

I need to check my to do list and make sure I’m knocking things out….

In the next week or so I will be blogging about some new tools we are and will be implementing into our home to help with our rampant attention deficit issue (all three of us have it…) …

Speaking of which…Boy just hollered at me that we need to dance.

Ok. I’ll be back.

Hugs.

b

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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