Challenge!

Come and join me in this challenge!

Let's get fit together. My groups is a cross country track .. "Blog Buddy Body Busters"

Go join my group and starting May 11th, log in the amount of getting fit that you do and we'll track our results together and see ourselves 'walk' across the country together as blog buddies!

If your goal is to get fit, loose weight, become more mobile because of chronic illness (arthritis is a bugger, but movement makes it less so! trust me on this one!) Get up and move, start with where you are, at your fitness level ...and lets get fit together!!

For the Love of My Life

For the Love of My Life.

Please honey, please, get better. It's not time.
The day will come when it's the polio, but for right now, it's got to be something reversible ... we have too much love still .. too much fun and too much life to experience together in front of us. Too many plans left unlived.

Ya gotta fight this babe.

If You Leave Me Now - P. Cetera

If you leave me now, you'll take away the biggest part of me
No baby please don't go
If you leave me now, you'll take away the very heart of me
No baby please don't go
A love like ours is love that's hard to find
How could we let it slip away
We've come too far to leave it all behind
How could we end it all this way
When tomorrow comes we'll both regret
Things we said today

Cause I need you more than you'll ever know

That's Entertainment!

I seem to be offering entertainment, of sorts, to my medical care team.

Last week, I failed to remember significant medical history of my OWN ... which highly amused my doctor. This week ... geesh I can't believe I did this ... I just didn't show up for an appointment.

I had an appointment with my neurologist first thing this morning. I'm driving away ... and I look up. I see, in the window, my orthopedic surgeon standing in the window and I think "hey! There is Dr. H! I see him tomorrow, right about this time!"

I go to the grocery store, then go to a coffee shop to wait for my husband to meet him.

The waitress, a long time friend is quitting on Wednesday, so she wants our phone numbers. I was digging for a piece of paper and I come across an appointment card. 3/12/07 8:50 Dr. H.

3/12/07 ... that's today. Not 3/13/07 ... Tuesday ...tomorrow. 3/12/07 ..8:50 ...that's today .. 8:50 was the time I was driving through the parking lot looking up at Dr. H ... EXACTLY at 8:50 ... going "Hey! I see him tomorrow!" GEESH!!!

So, I called the doctor's office and said "I'm an idiot"

Thankfully, they'd had computer screw ups, he'd had an emergency and they were trying to figure out how they were going to fit their morning in as it was. A missed appointment, for once was a relief, rather than a problem. I'm sure the record people who had to pull my chart for nothing didn't appreciate it.

She got a laugh, and she said she needed the laugh. At least they're not charging me for the missed appointment.

I guess it pays to be a faithfully on time, regular, dependable patient. They know I wouldn't have just done this for the fun of it.

I go back in 2 weeks on Wednesday the 28th ... I verified the appointment 3 times while I was writing it. Duh.

In the neuro's office. It was such an interesting appointment. We talked about where I was and where I am. "Semi remitted" whatever that means *grin* he kind of backpedalled when I started to get a bit hyper over it.
ok ... I get it .. I still need my medications, I still need my time management and I still have to take precautions with medications that I take. BUT ...Myasthenia Gravis does not interfere with day to day management of my life. It doesn't interfere with everything I do or say like it did at one time in my life. This, is a good thing. An extremely good thing!!! I get it! I really do. He evidently realized I got it, because I don't have to see him for a YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now ... if only we could get the lupus as under control as the MG ... I'd be feeling groovy ... however, the lupus does interfere with just about everything. Blah!
Still, given the choice between lupus interference and MG interference ... I'll take what I've got.

He did let me know that lasix wasn't a good idea for me. So, if I need it again, I guess I need to have them call him. He said there were all kinds of things that need to be done first. Something about some kind of lymph something therapy (squeezing the lyph nodes?), pressure hose and some other stuff that went right over my head. Especially if the exact cause isn't known. He really wasn't impressed with the severity of the edema ...to start with lasix he wasn't thrilled with. I told him I wouldn't take anymore. (I've only taken 1 and 1/4 tablets ... I took 1/4 tablet yesterday to see if I could flush the rest of it out) It did make me awfully sick.


And a side note ..this won't make any sense to anyone but the person reading it. E/O, if you read this. Stop ...don't email me, don't contact me. I told you to stop, I mean it. I cannot and will not absolve you. You were wrong. So wrong. You won't find absolution in an email, on my blog or in any way shape or form. You want me to tell you it was ok so that you can prove to your friends that it wasn't. It was. It was horribly terribly wrong. You're barking up the wrong tree. Go away.

I spent yesterday afternoon in the doctor's office/Oklahoma Heart office.

I went in, and she asked me a bunch of questions. I'd seen this doctor before, but my doctor is on maternity leave. (they had a picture, cute cute cute!)

She didn't seem very alarmed ..kind of ..blah ... a chronically ill patient on multiple drugs with edema ..ya? So?

I think she was expecting a little water retention one might get with a monthly cycle.

I pulled off my sandals ..and up my pant legs and her face dropped. Her demenor changed. Suddenly she went back to my chart and started to ask me more questions. Dizziness, nausea, chest pain, sweating ... I can't even remember what all.

then as she had me climb onto the table to examine me, she asked me about family history of blood clots. My mind started to work.
I couldn't think.
Who is it that had the blood clot?
Whas it Grandma B?
Was it Grandma P?
Was it one of my Aunts or uncles? I know it wasn't a parent! Someone, important close to me had a blood clot. I should know this.

I shrugged and said I couldn't think of someone, maybe one of my grandmothers?

Then as she started to touch my foot it hit me ...
"um, Dr. G, I had a blood clot, once"

DUH!!!! DERK !!! DORK !!!!

You'd have thought she touched a hot stove by the way she jerked her hands away. Ok, give up the history! Why isn't in the chart? (I don't have the answer to that one)

It wasn't in my legs, and it wasn't just a clot for clot sake ... I'd had a port that clotted off ...big time ... my whole arm got swollen and purple and and I spent 13 days in the hospital while they tried to thin out my blood with heperin (this should just take 2 days .... 2 weeks later ... I finally got out, fun experience). I spent a year on coumadin fighting the clot/clots in the port. I threw some to my fingers ... and then they took the port out.

Not exactly the same thing ...but ..since it clotted less than 24 hours after it's insertion ... it kind of ...well ... is a necessary something a doctor asking about clots needs to know.

duh

So, after she got over the shock of my revelation, she was ready to check the edema again. She was obviously worried. Deep pitting. She said that she could make caverns in my legs. I thought the left leg was worse, she thought the right leg was worse. (Left leg is bigger, right leg she could make deeper caverns in)

So, she decided to go ahead and do a venous study on both legs. I didn't think anything of it, I've had a zillion ultrasounds.

Um ..er ... YEOUCH!!!!!!!!!YEOUCH!!!!!!! Crud those hurt!

Anyway ... a little while after I got home, I got a call from the doctor's office. Take lasix, keep feet up, and drink water. Follow up in 2 weeks. (increase protien as well)

so all of that ...and it wasn't anything they can tell ... well good!

It's been a strange weekend. I've realized that my fear of stepping out to deal with the publicity and promotion of my book ...has pushed me into my shell ...farther than I've ever pulled in before. It's safe to say, I think depression has set in. It's weird. Circumstances have never been better. I wouldn't change a thing in my life (except, maybe go back and not write the book) and my inner turmoil has never been louder.

The discussion of maybe I thrive on chaos came up when things started to settle down and my emotions went haywire. As my life became even more settled, and my relief of the settling of the circumsances started to grow, and I started to breathe that I might be able to have a week without a crisis ...and then 2 weeks ...and then three ... it became agreed on. I don't thrive on chaos. Usually those who do ... when things settle down, manage to create chaos of their own. I'm definitely not doing that and enjoying the peace that comes with a peaceful lifestyle.

So, the next theory on the shelf, I think I liked less. There was so much in my past that I'd refused to deal with. That I'd stuffed down with the eating disorder ... or ..forced to put on the back burner to deal with sick kids, body falling apart or housing. I didn't have the bare necessities of security ...so the emotions ... could stay in control.

Now, I'm safe, and I'm secure ...and the past is insisting on being reckoned with. What it's done to me, is insisting on being reckoned with. My emotions feel like this volcano inside. Errupting with hot and fearful force. It was more than I could deal with. I didn't want to deal with it. So, I guess, my head decided it was time to shut down.

Sit here in my nice cozy house, with my wonderful family. I don't go anywhere but church and doctor appointments and I spend an abnormal amount of time sleeping. I don't even go to the blogs I used to visit, or talk to those that I used to. I've kept up with a few blogs ...pretty much the ones that are informative, rather than personal. If your blog was personal in nature, you've likely been one that I've been not visiting quite as often ...or at all.

How bad is it when you withdraw not only from the outside world, but withdraw from your cyberworld as well? hmmmm

So, for those of you who are wondering if I fell off the planet ...or if you offended me or chased me off ...no, you didn't ...not at all ... I guess I just decided that I wanted the world to stop for a while. (Stop the world I want to get off!)

I did an online Wakefield Depression scale. I'd not heard of it before. But it said that if you have a 15 to seek help. I got a 36. Well, good.

So, at some point, I'm going to have to pull myself out of this funk, somehow. I'm on enough meds to not be this way. It's fear that's put me here ... I don't think medications are going to get me out of here. I am afraid that facing it ...is all that's going to work.

I have to go to the primary care doc today. My legs and feet are swollen. Like sausages. My feet feel like someone is pulling a nerve in them when I walk the skin is so tight. I can't get shoes on.
Edema, isn't normal for me. It's happened, but it's not normal.

joy oh joy.