Sunday, November 1, 2009

Life Sucks Without a Blog

So, I used to have this blog.

And it used to be read by a few people and sometimes random strangers.

It wasn't really about anything really.

Just my view of the world and the events taking place around me.

It even had its own domain name and everything.

Well, it died.

A lot of what was in that blog died as well.

A new blogger was born so to speak.



I'm only 26....but I've dealt with and am still dealing with a lot of stuff that most people don't think about.

I think about things most people don't think about.

But I'm not that much different from you really.

We just have different dealings to deal with.

It may not look like it but I'm a pretty upbeat person.

I have this who realistic optimism thing going on most of the time.

Some days my blog posts may make you laugh.

Some days they might make your cry.

Most days though, they'll just make you go "What the fuck?!"

And maybe that's the point.

:)

How many times a day do you look around and say "What the fuck?!"

Maybe by reading this blog you may have one more thing to add to the WTF List.




But anyways....so yeah, I'm 26.

I was born in Detroit, MI.

I lived there until I was 13 then I moved to Springhill, FL with my family which consists of my my mother, my father, two sisters-Sherry (23) and Lisa (12) and a brother named Brian who just turned 16 on Friday.

I lived all around Florida.

The Tampa Bay area mostly and even a small stint in Orlando.

Life was going along alright.

I got to work in so many different jobs and meet so many interesting people and before I knew it I had a ton of friends and acquaintances.

I was writing for money.

I was dating different boys constantly.

I had a pretty cool social life and always managed to get out of rough spots somehow, some way.

A week after I turned 25, my life changed and pretty drastically.

Did you know there is a genetic disease out there that is the most common one and affects more people than Down Syndrome, cystic fibrosis, sickle cell anemia and few others I think combined?

And the weird thing about it is that not many people have heard of it.

It's called Polycystic Kidney Disease. PKD for short.

What happens is you get cysts on your kidneys and over time they can multiply and usually lead to end stage renal disease.

That means your kidneys stop working.

That means you have two options: go on Dialysis, which is basically a machine that does what your kidneys can't do for you anymore or get a new kidney.

Both of those things sound easy but I'm sure you don't have to be a rocket scientist to know that it's probably not fun....nor easy.

I was diagnosed with PKD when I was around 7. I was told I wouldn't have any issues until I was old like Grandpa. (He had a transplant back in '92 and is still kickin' to this day.)

That was probably the biggest lie I had ever been told.

I started having kidney infections pretty frequently starting at age 23 and then I had one a week after I turned 25 and the pain just didn't go away.

It took me a whole year but I finally got some answers from nephrologists (those are doctors who specialize in kidney diseases). PKD can cause pain due to cysts or just the fact that they enlarge your kidneys.

PKD was now in the driver seat.

My kidneys were just way too big for my tiny body.

And I also had high blood pressure and would need to start taking blood pressure medication.

I figured I could deal.

Then things just started to become harder and harder.

It took me about 3 months to recover completely from that kidney infection because it spread all over me.

I was getting tired.

I was constantly in pain.

I did my best to just keep on going.

Then on Christmas Day of last year I had a seizure.

After two extended hospital visits the doctors concluded that I had a condition known as migralepsy.

Seizures caused by migraine.

Did you know that a migraine is not a headache?

It's actually a neurological disorder that can mimic other things like schitzophrenia or even a stroke.

(Oh yeah...I had a minor stroke too....they aren't really sure when but it was found in January of this year.)

With my doctors help I made the decision to stop working and apply for disability.

My seizures were pretty controlled after the doctors put me on Topamax.

But then when I had another cyst infection that put me in even worse pain than I was then my seizures for whatever reason increased and became more violent.

The doctors upped my Topamax, from just 25 mg to 50 mg and I had a terrible reaction.

I didn't know what was going on for four days and did a lot of "not characteristic of me" things before realizing that it must be the drug.

The doctor ordered me to stop it immediately and then I suffered froom the withdrawals from it for the next week and a half.

My brain had to wire itself back together and I really didn't think I was going to make it.

If it weren't for some of my friends and especially Michael (more on him later) I think I would have died.

But I made it and since I had nowhere to go really since I literally lost everything, my Uncle Dennis and Aunt Donna moved me back to Michigan. Port Huron, actually....about 45 minutes from Detroit where I grew up.

So I've been here for about 4 months and it's been awesome to hang with my family and also to adjust to my new situation.

I deal with my migraines/seizures/kidney pain the best I can.

Most days are pretty good even if I do feel like a 62 year old.

I can't walk for very long....can't stand for too long without getting dizzy and am pretty weak and have trouble even bending just a little.

Some days are bad. Sometimes the migraines make me pretty loopy, kinda like I'm Alice in Wonderland. (Did you know that Lewis Carroll was thought to be a migraine sufferer? Believe me, it makes sense to me.) Sometimes I have kidney stones or just general cyst pain or hematuria which is blood in your urine.

Aside from all that though....I still feel like there is a twenty something female in here who likes to read, write, sing, be happy and do lots of things even if I am limited in what I can do now.

That's the whole purpose of this blog.

To let you know how I feel about things.

Because I can. ;)

My boyfriend, Michael, will be flying here from Hudson, Fl on November 5th and will be driving me back to Florida.

My Uncle Bob who lived in Florida with my Grandpa passed away suddenly and Grandpa offered me a place to stay.

As much as I love this state and the people in it....I don't want to waste another minute being away from Mike because he truly is the love of my life.

Mike and I went to the same high school and dated when we were 19-20.

Because we were both young and dumb it didn't last but lo and behold....my tripped out Topamaxed mind led me to his doorstep and he helped me through it and did so much for me I don't think there is another person in this world who would have done it.

Through all of that we got closer again. We had started hanging out again earlier that year and I always knew Mike was a good person and someone I could count on as a friend. Next thing I knew we realized we never really lost the love we had for each other and became a couple again.

It was hard.

I had to leave him right after I got him back because of circumstances.

But I'll be returning to the land of too much humidity for him.

Eventually he wants to move north and I'm sure we'll do it.

The economy is just bad and it's hard for people in any field to find jobs these days.

Mike does computer stuff.

Software stuff.

Please don't ask me to explain because I really coudln't.

But he's good at what he does and loves it.

And I support him in it even if I don't understand all of the jargon.

So, I'm excited.

My family here will get to meet the man of my dreams and I will be closer to him.

He really helps me out on my bad days because he seriously is the calmest person I've ever met in my life.

I'm a Gemini so I can be crazy and all over the place sometimes but Mike keeps me grounded.

Mike doesn't mind that I'm not the healthiest person alive and that I have a lot of limits.

He loves me for who I am and accepts that my situation is not the best and that it may get worse.

As we speak, my kidney function is at 100%. I am thankful for that every day.

I am not the only person in my family affected by PKD.

We all are on my mom's side really.

My little brother just had to start taking BP meds.

My mother's kidneys are already slightly declining in function and my sister Sherry has some cysts but no issues yet.

My Uncle Dave passed away from complications due to PKD.

My other two Uncles Bill and Bob passed away from heart attacks.

Heart disease is in my genes as well and PKD-ers have a greater risk of heart attack, stroke and brain aneurisms.

My Grandmother passed away from kidney failure due to Diabetes and her sister, my Great Aunt Ginger, passed away from a brain aneurism and she didn't have PKD.

The numbers do not look good for me....but who knows? I'm already a walking miracle I think.

My kidneys look awful and cause me issues but are still working awesomely.

I think that's pretty darn miraculous, don't you?

That's the weird thing with PKD.

Not everyone feels the same effects.

I'm the only one with it in my family who suffers from pain.

My Uncle Dave did before he had one of his removed but he passed shortly afterwards.

I hope the others don't ever have to feel pain.

It's not fun...not at all.

Since PKD is often inherited everyone with PKD has a 50/50 chance of passing it on to their offspring.

I have already decided that having children is not the best thing for me and I also wouldn't want to pass this on so that was something else I had to accept and deal with since I've always wanted children someday and have loved working with them.

But I'm lucky to just have had the experience of working with so many different age groups for like seven years.

(Ever have an entire summer full of 13 two year olds? Try it sometime. I don't know how I survived either, haha)

Alright, medical history aside.

I like to have fun.

I like to think.

I like to do what I want to do while I still have time here on this Earth.

I'm Native American.

I smoke cigarettes. (Yeah, I know.)

I occasionally drink. (Yeah, I know....)

And I also fully support legalizing marijuana especially for medical purposes.

When I smoke it I have less seizures, less pain and I actually eat like a normal person.

(My big kidneys cause a lot of nausea and most days it hurts to eat. I also get full very fast.)

So, argue it all you want....it's a plant and it's my favorite one.

Well, I think that was a pretty good introduction to my blog.

You'll see where it goes from here as will I.

Right now I'm sitting at my cousin Sharon's apartment in Romeo.

She lives here with her boyfriend Ronnie.

Sharon is playing Halo and Ronnie is on his laptop.

I've been here all week and this is what we've been doing and I gotta tell ya, it's been very awesome and relaxing considering that there was a lot going on over at my Uncle's place because of the funeral for my Uncle Bob and all the memorials planned.

The funeral was on my tribe's res in Wisconsin and it was awesome to visit there even if the circumstances weren't the best.

There will be a feast here in MI on the 7th so that will be like the last big get together before I leave for Florida.

It's going to be hard to say goodbye but I truly hope I will be moving back here soon. Mike wants to....it's just going to take time.

How was everyone's Halloween?

I just played Bejeweled Blitz and am drinking a few Bud Lights.

I was kind of sad because this was the first year it was Halloween and I really wasn't into it.

It used to be my favorite holiday.

Sheesh, maybe I really HAVE become a 62 year old! haha

Alright, I think I've typed enough.

Stay tuned for more random thoughts from Jenn-World.

I can be pretty intriguing sometimes.....I think so anyway.

Don't forget to set your clocks back!

P.S.- I also help raise money and raise awareness about PKD for the PKD Foundation. My family here in Michigan helped me raise over one thousand dollars for the Detroit Walk for PKD that happened last month. For more information please visit www.pkdcure.org



3 comments:

  1. danm that's rough girl! Keep up the smile!

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  2. Glad to hear you're coming back! Sorry you have to leave such a gorgeous place (I can only imagine considering it has real seasons) but we're all very excited! -karen

    ReplyDelete