Archive for the 'Postural Orthostatic Tachycardia Syndrome (POTS)' Category

24
Sep
09

“Nobody puts Baby in the corner!”

The music is loud with a beat that wont quit. The rhythm makes me tap my foot as I sing along with the words. I start to sway from side to side. I have the urge to run to the dance floor. I can’t seem to get there fast enough. A friend follows close behind. I turn and sway and jump. I dance my heart out. A new song comes on and I continue without missing a beat.

There’s nothing like being free out on theat dance floor. I love how a different song brings out a different style of dance, a different move, a different emotion. I would spend most of the night out on that floor, not wanting the night to end. When the band took a break or the DJ finally packed up for the night, there was always a sinking feeling in my heart. I felt like the fun was ending, never to begin again.

Now however, I sit in the corner. Watching everyone else have the fun. Wishing I could be the one out there. I may dance  a song or two, but I pay for it immediately. I see friends having fun. I see kids twirling and laughing. I long to be out there with them.

Out of all the things I miss out on now, dancing tops the list. I miss that rush that only a unforgetable song with a great beat brings. I miss spending all night feeling carefree out there. I miss laughing with my friends as one of us do a ridiculous move. I miss dancing with my girls. I miss spinning them as the giggle. They beg me to join them, but I can only for a few sweet short minutes.

I just want someone to come and take me out of the corner…

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14
Sep
09

Scary thoughts…

On Friday, I went to the doctor for yet another check/adjustment on my meds. I just started a new med, a very common med mind you, about three weeks ago (working great, by the way). However, it is considered a narcotic by the government, so is regulated closely. For the first month, my doc only gave me enough for one month because (I thought) he wanted to make sure it was working the way it should. He faxed in the prescription about six weeks ago to my insurance and my prescription-by-mail company that I use to save money. Now, my medical insurance company wanted to send it out right away, just like the many other meds I take. I usually get the pills withing 2-4 days of being faxed in. This particular drug took 3 weeks to get in the mail… 3 weeks! Not because my insurance company didn’t like it, or my drug company didn’t like it, but because my government didn’t get their act together. It put everything on hold for three weeks… including my health and well-being! Now, of course, I wasn’t going to die without it… but come on!

It gets worse…

My doc likes what the med has been doing and wants me to continue them. So he starts up his computer, ready to write up the prescription. I tell him it took 3 weeks to get them the first time and I would rather take it to a local drug store, even if I have to pay more because I cannot wait 3 weeks  to get more. I will be out by then. (A little info… it’s the refills that end up costing me more, not the original prescription.) He proceeds to tell me cost will not be an issue because he can only continue to give me one month’s worth at a time because the government wont allow refills on this med.

I asked, “So all these millions of people on this very popular, widely use drug have to go into their doctor every month to get a new prescription just because the government wants to get their hands on it? They can’t allow the doctors and drug companies to figure this out for their own patients?”

“Kinda ridiculous, isn’t it?” he asked.

There’s more…

Then he proceeds to tell me that after a lifetime carear of service with the same clinic, he is now switching to another clinic. After asking him why, he said that the “higher-ups” didn’t like his way of doing things. This had been going on for years, and they finally got to him enough for him to leave.

Now, for those of you that don’t know my health stuff and all that I’ve been through in the last year and a half, I have to tell you that this is the ONE doctor that took me serious and took the time and energy to figure out a way to help me, no matter how long it takes. You have to also know that I went to 9 other doctors (and countless tests) before him who all gave me the boot and basically said “Live with it.” He also literally brought my grandfather back to life when he had his massive heart attack over ten years ago and he helped my mom figure out her heart issues years ago as well when no one else would. So, needless to say, I have a TON of respect for this man and his way

After all this rambling… yes, I do have a point! I don’t think the “higher-ups”, whether it be the bosses or the government, should have any say what happens between me and my doc! I now have the right to follow him to his new clinic, which I will do even though it’s twice as far away (and I was already going 45 minutes – one way – to see him). I may not have this right if the government has a say in it with their new plan. They may tell me where to go and who to see. They will probably give me the boot, just like all those other doctors, saying I’m just fine, even thought they’ve never met me or see how I live on a daily basis. I’m not a patient at that point, I am a file, a number, a faceless dollar! They may also make it even harder for me to get the prescriptions I need. They can’t even get their act together enough for me to get my meds in a timely fashion. How are they going to run the whole system? 

Another thing to think about… When my mom was diagnosed with breast cancer, she found the lump herself. She went to her doc and asked to check it out. He did so with a mammogram, but nothing showed up. If the government was in charge of it all, would they have checked into it further… probably not. But my mom had the brains and the right to push it further. After doing more tests, they did find a lump and, in my opinion, maybe saved her life!

How is the government going to deside what happens between my doc and me? How are they going to treat me as a person? How are they going to treat my doc – the way his bosses treated him – regulating all that he did until he leaves – for good this time? All the good doctors will be gone! All patients will be pushed aside! Everything would be run by the all-mighty dollar!

Is that what we want? I don’t know about you, but it scares me to death!

25
Feb
09

Imagine…

Imagine…
You wake up still completely exhausted.
You find it hard to get out of bed.
You feel like junk!
This is how you feel…
All day…
Every day.
 
Imagine…
Day after day…
Longing to be able to stand, walk, dance, play.
You have an invisible illness…
Only to others.
Lab results only show what you don’t have.
You’re confused, and so are your doctors.
Family and friends might not understand.
They might say it’s all in your head…
But it’s not.
They may tell you to “suck it up.”
You try…
And try…
But can’t.
They don’t see how much you suffer…
Almost every minute of every day.
You try to live your life… persevering.
 
Imagine…
So many pains… 
So many symptoms…
Your heart… pounding, jumping, skipping.
You can’t catch your breath.
Your hot… but cold.
Your world spins.
Your vision changes by the minute.
Your ears roar.
Your head pounds.
Your stomach churns.
Your hands and feet tingle.
Your legs throb and burn.
Your joints ache and pop.
You’re fatigued beyond words.
You feel “outside” yourself.
The list goes on…
And on…
So frustrating.
So despairing.
You pop pill after pill…
But do they really help?
Too often, the treatment makes the disease worse.
And you might not even know it.
Other things said to help also make it worse or have no effect.
 
Imagine…
You have enough energy to play with your kids…
OR…
Cook supper…
But not both.
The smallest of tasks are now huge chores.
You want your energy back.
You want your strength back.
You want your life back.
You want some company…
Not pity.
 

 

I wrote this because not many people understand what I go through every day. I want people to know that just because I look fine, it doesn’t always mean I feel fine. So, if I flake out on plans, leave early, or just sit in the corner, it’s just my way of trying to feel better in the moment.  All I need is for you to pull a chair up beside me (because you know I’ll be sitting down) and have a fun conversation that has absolutely nothing to do with being sick.



Be who you are and say what you feel because those that mind don't matter and those that matter don't mind!
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