My life as I know it!! On wheels!: April 2015

Monday, April 27, 2015

New beads came today for Misty's key chains

From Misty (Last week)

Hey friends!

Here’s an update from my appointment yesterday!

I'm going to give you a little background on this pump so you fully understand what I've been going through the past few months even I would say a year!

Now if you know me well especially my mother she would tell you that I am NOT someone that complains about how they are feeling unless I feel like crap.

I was diagnosed with CP at the age of 2 and that in a wheelchair ever since and use the Walker until I was 18.

Started using a motorized wheelchair my senior year of high school because the pain in my arms was just unbearable.

In October 2009 I was dealing with headaches in the back of my head it were just unbearable and spasms in my legs that I've never experienced before.

I tried and I tried to just deal with the pain with the medicine that I was taking but it just got too unbearable.

I got online one day and I started researching different things that could maybe help my pain.

Now my mother would also tell you that I'm not a person that likes to take medication at all and I would rather deal with it with Tylenol or Advil something low key like that this pain was unbearable and Tylenol and Advil were not helping.

So I was online and I came across this thing called a baclofen pump.

This pump looks like a hockey puck and it is placed under the skin of my stomach so from the outside if you're looking at my stomach you cannot even tell it’s there.

I decided to have the pump placed now I'm already on baclofen oral pills so I thought it was a good idea since I'm already on the same medication that way I don't have to stick another medication into my body which I completely hate doing.

Now with the pump I have now I've had every complication that you can possibly have with having a baclofen pump.

The catheter has moved 3 times so they went in and surgically placed the catheter so it could not move.

I could go into details as to what happened when it moves 3 times but I'm not going to do that because it's not something I want to re-live.

The pump flipped over so the port is on the bottom and the bottom is on the top which means I had to go back in for surgery so they could flip it back over. Then they surgically placed it onto my stomach wall.

I've been through withdrawals which means I puked on the doctor shoes several times.

Because I wasn't getting enough medicine it was making me sick.

Now I guess I have to explain that a little bit more so that you understand.

I am so sensitive to medication it’s not even funny.

With this pump if there is not enough medication in the pump I will get sick and if I'm getting too much medication I will get sick.

And if the machine is not pumping correctly I will get sick and I have to deal with spasms and headaches that are just unbearable.

So that is what I've been dealing with in the past 5 years.

Now I'm not blaming anything on anyone nor is it anyone's fault.

God chooses who he gives things to and he just chose me to deal with all this pain and all these surgeries that I've had since I was 2.

And even though it's been hard friends I would not have it any other way because this is who I am and although it sucks at times I love Who I am and I don't think anyone else could handle it as well as I have.

So yes! In May before the 28th which is my next pump fill I will need to have surgery again to have a new pump placed.

I need to meet with the surgeon first and then I will know what day the surgery will be.

It’s a huge relief to know that all the pain and all the spasm and all the sleepless nights that I have had in the past few months is not my imagination all the pain headaches in spasms are there.

The pump that I have now is not working correctly and the alarm set I've heard in the past few weeks are there and it has actually going off.

So my doctor has decided do not put me through any more tests and just go ahead and let me meet with the surgeon to have a new pump placed.

Now I just want to say a big thank you to my family and my friends who have been by my side for the past 5 years.

I love you all so very much you just don't know how much!!

Now as I get set for the surgery as I always say to my mama.

I will see you when I wake and Mama I will be ok and if I don't wake up that's OK too.

Mama that just means that it was my time to go so I can watch over all of you and keep you safe!

If everything goes as planned I will be in the hospital a few days I would say up to a week or so. The doctor wants to make sure the pump is working and NO complications happen before sending me home!

Misty we want to give you a fresh start with a new pump and leave the old one behind!

So it'd be really cool to have some fun craft things to do.

So I'm not sitting in the hospital bored out of my mind.

Out of all of this that is what I hate the most sitting in the hospital I hate being in the hospital where I can't move and do my own thing so if you get to the store and you see something I might like please send that my way before I leave so I can take it with me so I have something to do while I'm sitting there recuperating and when I'm at home healing and getting back to my normal routine.

Okay so this update is getting very long so I think I'm going to go for now and as soon as I know more the day and the time I will for sure post it.

I love you all very much and thank you for being by my side through this road ahead and I will see you on the other side with my smile on my face as always.

Love Misty Dawn

Tuesday, April 21, 2015

New at Misty's Key Chains

From Misty

hey friends

I promised you updates so here's a very important update

I'm having some issues with my baclofen pump it's went off twice in the past couple weeks so on Wednesday this week I will be going down to the cities to have it checked and make sure everything is OK

as of right now I'm not sure what is going to happen if it's just going to be a check up or if I will be scheduling the surgery sooner than December

I know everything happens for a reason but I have to admit I'm kind of scared for the surgery to come I know it needs to come but I am very scared because of all the complications I had one this pump was put in

I know I can't avoid this surgery but I am scared and I want to go into the surgery but I need to have the best quality of life I can

my pain is been really bad the past couple weeks so I'm pretty sure the battery is dying on my pump which means I need to have surgery

I don't know as of yet but I will know more info on Wednesday and I will probably post it on the Thursday when I'm all rested from the trip

so here's what I'm asking please keep me in your prayers and tell God to hold me in his hand and keep me safe

I'm pretty scared but I know it needs to be done and I have to take care of myself otherwise my pain is going to be really bad

so over the next couple days just keep me in your thoughts and prayers I love you all very much and I will update as soon as I can

love misty dawn

From Misty

Ok friends why is it people always think I'm going to get mad if you tell me the truth if you're my friend and you know me well I'd rather you tell me the truth then not tell me at all

I've been through a lot the past couple months!!!!!!!!!!!!!

I have a heart of steel and when I need to be soft hearted I will be but please if you're my friend tell me the truth be honest with me and I will be honest with you
there's no need to feel bad if you need to tell me something and be honest with me I've had to grow up fast and if there's something I need to know but you don't want to tell me just tell me anyways

Yes I'm in this wheelchair but that doesn't mean I don't understand I'm very smart and I know what's going on around me!!!!!

So all I ask is that you be honest with me and be my friend
Love Misty Dawn

From Misty

Good morning my friends!!!

What a beautiful Saturday morning it is!!!

I a amazed myself every morning when I get myself into this chair and realize that I can do things that I haven't done in years this morning I put on my pair of tennis shoes that is a size 6 all by myself no normally I would need help with this in my PCA would help me with this but I did it all by myself I'm extremely happy with myself I just cannot explain.

And I can also tell you that I am down to size 18-20

I'm so happy with myself and I feel so amazing.

See if you set your mind on something you can do it and I am doing it I am so happy with myself. You can do it you don't need no diet program. if you wanna do it just search your mind and take care of yourself and do it you can do it. That is what matters!!! And you know what I feel amazing and I'm so proud of myself!!

And that's what I have to share on this beautiful Saturday morning and now I'm going to enjoy the rest of my day have a great day friends and keep smiling I love you.