Sunday, September 10, 2006

Normal would be nice

I am starting my third week of grad school on Monday. And I have a fever of 100.2 ... marvelous!
This really frustrates me. The problem you ask?... I have been trying to do too much right off the bat. I am trying to be "normal". Doing things that other people want me to do, and truthfully, I want to do most of the things too.

Things that are zapping my energy/stress me out/in need of processing:

1) forging new relationships in and out of school.
-my current friends know all about my health issues and accept them. They have had time to
process the information, and don't hold it against me when I am too tired to do something or
call them back.
- I haven't had as much time socializing as most people my age have. They have gone on plenty of
dates, had relationships, etc... I haven't. It's all as new to me as it was to most people in high
school. ( I was in HS for a year or two off and on, and dated a bit, was in a two year
relationship, had friends...but not to the same extent).
- So I freak out REALLY easily! This is especially true with the opposite sex. I'm just now
comfortable around guys that I have known for a semester... see how wierd I am?
2) school work
-reading and studying can be difficult and energy consuming for me. My mind does not work
like everyone elses. I can't always verbalize what I'm thinking, which makes me look stupid
-if I end up sick, the work is even harder for me. Concentration is a joke!
3) adjusting to being away from home
-calling my mom and letting her know what I'm doing etc... I realize I shouldn't have to do this
at my age, but if your mom had been through with you/done for what she has done for me,
it's a small price to pay to keep her at ease.
4) keeping existing friendships in tact
-getting to do things with friends is a favorite use of my energy, but often follows after school.
So I don't always have the resources to do what I would like to do.
5) explaining myself
--I feel like I always have to account for my actions as to why I can't do something, when
in reality I should just let people deal with it and not worry.

Well I feel a lot better now, although I'm sure I sound like a complete loser and a wreck. But you know what? I have friends and family who love me, and my health comes first.

And I hope to take all of these difficulties that I encounter, and use them as tools to allow me to help other people with chronic health problems cope, live, learn, and love.

That's all for now! And comments are very welcome!

Some background to help you understand me...

Before reading my posts and thinking I'm a whimp who can't deal with every day pressures, do a little research before drawing such conclusions.

Try going to the website and click on the link "living with cfids", take those suggestions out for a spin and see if you understand a little better.

Also, CFIDS is not my only health condition, I have a genetic connective tissue disorder which keeps me from healing properly and I sustain injuries very easily. A blood pressure disorder, a chronic pain condition which is enhanced by the connective tissue disorder, TMJ, allergies, asthma, and on top of everything else, a Chiari malformation and cervical stenosis.

I underwent surgical correction for the chiari malformation at just 17 years of age. They did what is called a suboccipital craniectomy. This is where they go in and remove a piece of your skull to make room in the crowded area. (Sounds simple, right?) Well, in most people they would put in a bovine patch to take the place of your bone. But in my condition because of the added complications of the Ehlers Danlos (connective tissue disorder) and cervical stenosis, the patch was not a possibility. So yes, folks... I have an extra hole in my head.
Before the surgery I was bedridden, physically unable to walk due to numbness. This numbness was the precurser to flat out paralysis...and after the paralysis sets in, death is possible. All the while dealing with this, I had doctors telling me there was nothing wrong (sorry ya idiots... if you can't feel your own body, something is wrong). It wasn't until my films were sent up to my specialist who saw what he had feared and then on to a facility who was familiar with these films that they were able to see the problem... and then fix it. FINALLY!

Okay, so now that you know the background... I can go on to my next post

Sunday, August 06, 2006


So, I am still struggling with the loss of my dog, it's going much better now, but still hard. When I heard a song the other day, it made me cry. "I let you go, I let you fly, why do I keep on asking why"... it was exactly how I felt.

My animals, along with my family have been a large part of my ability to cope with my illnesses. And I think that is what makes it so hard for me. Some days I wish I was just normal...but then again, who determines what is "normal"?

Everything I have been through, especially the bad things, have made me who I am. I feel that God has done this FOR me, not TO me. But some days I still get FRUSTRATED and SAD!
Most of the activities that I love doing, I can no longer do because of the brain surgery I had. I can't go horseback riding, no parasailing, going on roller coasters, or anything else like that. Just thinking about it makes me sad. I owe my life to the doctors and the surgery, and my family...but oh the pain, the desire to have had a normal 4 years in high school. Prom, homecoming, bad grades, all of those little things that people take for granted...I long for.

I am much more mature than my peers, and have been through more in my lifetime than they probably ever will... but you know what, that is life. This is my life, and I have a purpose. I will help people, and I can't wait to start. I am hoping that in some way, this blog that I am starting will be a small dent in what I hope to accomplish in my lifetime.

So for now, God bless, and live each day the best way that you know how, because a portion of it can be taken from you at any time, without warning.

Saturday, August 05, 2006


My dog Maggie had to be put to sleep on Wednesday because of two tumors (one pressing on her lungs, and one pressing on her liver, pushing everything out of place). Because of her age (14 in dog years...90 something in human years) and the size of the tumors, morally, ethically, and humanely, this was the only option. She was an adorable Yorkie... full of life and love! She absolutely loved to chase tennis balls and go swimming, she would even go down to the garden in the summer and come back with a turtle in her mouth.

I never really considered myself to be a dog person, mainly because of the messes they make (I guess)...but I loved her. Before we took her in to the vets, I told my cats what was going on (no, I'm not crazy... I just feel that animals are smarter and feel more than we give them credit for). Lefty, our 3 legged cat who had a fight with cancer several years ago and has been with Maggie since they were babies, did the most touching thing. I had to carrie Maggie into the house, and I told Lefty to say goodbye. He licked her on the head, and then put his nose in her ear for a minute or two, and then Maggie went limp in my arms. I really think he said goodbye, and that he somehow communicated to her what was about to happen. And I thought she had just died in my arms, but she hadn't. I never expected it to be this hard.

When we came home from the vets, seeing her food dishes on the floor sent me into tears again. The reminders seem to be never ending...her food, leash, bed, tennis balls etc. Swimming was not the same, nor was eating dinner and not having her there begging. Even my cats are missing her, I came down one morning to find Abby, our calico cat laying up on the chair by the doors in the kitchen staring out onto the porch at the bed where Maggie liked to lay when she was outside. Lefty continues to holler at the top of his lungs.

It is now Saturday, and I still keep crying off and on, but not as much. SO, how does this realte to living with CFIDS, well... for those of you familiar with it...STRESS KILLS (so to speak). My pain that was under control thanks to a new medicine, came back with a vengeance yesterday. And I now have an extremely sore throat and my fatigue is worse than usual. Hopefully this is just a temporary setback, and won't turn into a full blown relapse.

I never knew it would be this hard...