It's My Life... It's My Choice!

Okay so, I was not able to type a long blog today or use Dragon Dictation (it doesn't like my accent I guess) ... and I really felt like I should try out the video blogging thing. So here is my first video blog :

http://youtu.be/iu71GiXujEQ

Getting Out of the House

So as we all know, getting out of the house now living with MS, is a bigger task then what it used to be. Because for one, we forget things that we need while being gone. The grocery store is no longer that annoying that you don't like to do. It's that annoying, yet tiring thing you have to do. And if you experience weakness, you have had to change your whole shopping experience.

For one, you have to try and find a time that you can get to the store when it isn't very busy. And when their is a close parking spot available and/or a handicapped parking spot available. With me, being 24 and having a handicap parking pass, I get those "looks" and people have even said, "You should be ashamed, abusing your grandparents parking pass like that". Once I get my cane out, they turn the other direction and walk away very fast.

So depending how you're feeling that day, you also have to see if there are any shopping scooters available as well. And if you don't have anyone with you, you have to see if there is a store employee that can help you reach the higher things on the shelves. Sometimes I just think to myself, "Man, trying to plan out my trip to the grocery store, is like trying to plan a vacation."

Now when it comes to getting out of the house to go see your neuro... My thoughts are... "Okay... what kind of news am I going to get this time around." So then you try and prep for your appointment so you don't forget anything. You sit down and have your list of medications... and then you are getting all your questions you have written down, and you get mad at yourself cause you try and remember something you wanted to ask.... but can't seem to remember anything.

Then you have to take in to account, okay what time do I need to leave, who is going to take me or did I remember to have enough gas in the car? Then you have to check the traffic reports... the weather... etc. In my case, I have to make sure my appointments are scheduled when I have someone to watch the kids, if they aren't at school.

Now when it comes to getting out of the house for pleasure... like going to a friends house or something like that. You have to think about, okay... what can I wear that looks nice, but is easy to get on and off by myself. ( if you have spasticity in your hands, you know what I'm talking about ) Then you need to see if there is going to be food where your going, or if you need to eat before you go or bring a snack. Then you need to bring medications, just in case. It also depends on the time of day the social gathering is. If it's later in the evening, I need to make sure someone can drive me because I have issues driving at night. It also depends on if the gathering is inside or out. Living in Texas, I can only take so much heat.

So, instead of the days where you could just grab your keys and go... it is now a hourly process of preparation to do anything. Because now, if I'm going on long car rides... I have to make sure I don't drink a lot of liquids and I make sure I use the restroom right as we're about to walk out the door.

In some ways, I get jealous of those who can just not think about all of these things when going somewhere, they can just pick up and go. It's like, I really took things for granted before I was diagnosed with MS, even the littlest, simplest things!

Okay, that's all from me today. Happy Mother's Day!

xoxoxo
Ashley

I'm sorry, I forgot...

Okay, so all of us who have MS that are impacted with our cognitive issues, have all said something along the lines, "I forgot"... and it's like an every day saying for me. I try to keep a "to-do" list of things that need to get done, then I forget to look at the to-do list all together. What good does that do, right?

I've been trying to do so many things to help me remember things that I'm supposed to do... but nothing seems to be working. The best things I've found to do is set up alarms on my computer calendar and my phone... but I need to get it set in my head to make those notifications right when I think about it, instead of trying to remember later on, which won't happen.

Like, my Urology follow-up... I was supposed to re-schedule it, forgot to do that. I forgot to contact my lawyer for Social Security to update them on a medication change. I forget to pay bills (big oops there). I forget to do things my husband asks me to do, then I feel bad, because he is the one out there working and I am asked to do something simple, and can't even get that done. I know he understands why I "forget" to do these things, but I can tell that it does frustrate him sometimes. Not so much that I personally forgot, but the fact that my MS causes the things it does.

There needs to be like an MS Reminder App or something, that way it will be like "Ashley, is there anything you need to remind yourself of?" and it does that on a timer, or something.... that way I don't have to depend on my family or friends to ask me this, I could be like oh... "there's an app for that" lol I should totally see if I could make that app, if I can remember to...

The thing I'm learning with my cognitive issues, is to stop saying SORRY... it's literally NOT my fault that I forget to do these things.... even though I feel bad that I personally forget to do these things, it's not my fault that my MS causes it.

I mean I could be talking to someone about something or getting on the internet to do something and I forget right then and there, so it's not something that with a little bit of time passing that I forget things, it can happen within a minute or two.

Am I on medications to help with my cog-fog... yes, do meds ALWAYS make everything 100% better, that's a big fat NO! Just like any other medication that I'm on, it just "helps out" it doesn't make the symptom disappear, even though that's what some people like to assume.

So what do you do to help yourself remember? and I'm not just talking about a thought and/or idea, I'm talking about... like EVERYTHING... like where you put things (I'm the WORST at that). I lost my house keys a while back, still can't find them. I always lose my car keys too... not the best thing to "forget" where I put them either.

Ha, as I'm doing this blog, an alarm reminder just went off on my computer about my neuro appointment tomorrow! Sorry, I had a laugh about that one.

What really gets on my nerves, is I can't remember if the dishes in the dish washer are clean or dirty... so I just run the wash again, to be on the safe side. Oh, sometimes I can't remember if I took a certain medication... that's a big OOPS, because it's like I just can't take it assuming that I didn't... but then if I really didn't remember to take some of my meds, I'll find out soon enough.

I swear, if it wasn't for Facebook, I wouldn't remember ANYONE's birthday! So thank you Facebook for making my life a little bit easier. I forget what day in the week it is... how can I remember when someone's birthday is! I feel bad on that one... people tell me they understand but it doesn't make me feel any better if I forget to tell someone happy birthday.

Mailing stuff off that needs to be mailed off in a timely manner, ya no good at that either. It's like... sometimes, it's not just the painful symptoms that get to us the most, it's the mental ones as well. I'm sitting here trying to think of things I need to bring up at my neuro appointment tomorrow... which I will probably forget some of the things that I thought about a while ago, then remember right after the appointment and do a palm to the head kind of thing.

Alright, now that I remembered some things I needed to do, as I was doing this blog, I'm gonna write it down NOW.

xoxoxo
Ashley

Doctor Appointments

Okay, so in my blog I talk a lot about my personal feelings, my personal issues... but I've been thinking a lot about what I want to write about and I decided on Doctor Appointments.

So yeah, we know no one likes going to the doctor, the drive, the wait, the news that we could possibly hear.. etc. What I want to talk about, is what we can do to prepare for these appointments. Having MS, things get difficult to remember when going to see your neuro for instance, asking you your symptoms, your meds... and the list goes on and on.

So here are some things that I do to make things easier...

1. Get a good nights sleep, the night before your appointment! 
2. Keep a journal of symptoms & when I experience them
3. Keep a list of medications, w/ MG and how many times I take it
4. Keep side effects in a journal, of the things that I think come from taking my medications. 
5. To remind myself of my appointment, I have an alarm set on my computer and phone to remind me days before and hours before. 
6. Make sure you have eaten before you go to your appointment, just in case it takes longer than expected. 
7. I actually use a website to help me with keeping track of everything. It's called PatientsLikeMe.com
8. Take a notepad with you to your appointment so you can write down what the doctor says, that you want to remember, but know you won't unless it's logged. 
9. In the journal you keep your symptoms and such in, WRITE DOWN YOUR QUESTIONS! Because we all know that we have a question we want to ask, then end up forgetting until after the appointment. 

Ok, so I'm going to tell you a little bit more about the website I listed... on that website,  you can track your symptoms, quality of life, medications, etc. AND when it's time for a doctors appointment they have a DOCTOR VISIT SHEET! All you have to do is print it out... there is all the information your doctor will need! 

Remember, this is a doctor your going to see, so don't feel embarrassed about anything you are going through due to your MS! They have heard it before, trust me. I mean, trust me, I know it's hard to get the words out... but it's totally worth letting them know, then just ignoring the symptom and dealing with it. It was hard for me to tell my doctor... I keep peeing my pants, but hey, I'm not doing it anymore, because I talked about it! Just keep telling yourself, "Okay, I'm not the only one who is dealing with this." It helps out a lot, trust me. 

Something I do, I ask for my medical records periodically. That way I can keep track of things, and have them on hand if I want to remember something, or if I need them to show to any other doctor that I go see. Plus, it's pretty neat looking at my brain at home! lol 

Okay, so this is a bit of subject, but I found it very interesting... I looked up what part of the brain controls what... then I looked at my records, so I could say, okay I have a lesion there, that's why I have mood changes... Here is a link to give you more information about what part of the brain, controls certain things with your body. http://www.braintumor.org/patients-family-friends/about-brain-tumors/brain-anatomy.html

Now, I don't know if you read any of my previous blogs... (shame on you! jk) 

But I'm leaving tomorrow for New Orleans to go to the American Academy of Neurology (AAN) Meeting. http://www.aan.com/go/am12

So, I have a 'separate' blog for this meeting, where I want people living with MS to ask questions on my blog... or give me feedback. The questions that are asked, I will try and get answered by doctors at the meeting! So to know more about the coverage I'm doing with MSWorld you can go to: https://conferencecenter.msworld.org/american-academy-of-neurology-2012-annual-meeting

You can view that stuff even if you aren't a member... and if you aren't a member of MSWorld, shame on you again... JK! 

Anyways, I think I'm done rambling on... I kind of went from one subject to another, but hey, I have MS... give me a break already. Oh by the way, thanks for all the comments! Love getting them! And you can ask me questions also, I'm pretty much an open book for the most part! 

xoxoxo

Ashley

Check out this video about MS, from the National MS Society: 

http://www.youtube.com/watch?v=fIQTCCaz7lM

Cost of MS...

Okay, so I've been doing some research on how much MS actually costs... and I was kinda shocked by my findings...

Did you know that on average, the cost for someone with MS is $69,000 a year? That's like an average persons yearly salary, doubled! Now, on a national level, it costs $28 Billion Annually!!!!!


When people ask me about MS... I give them the basic run down on what it does, and all that... the "normal" overview of it all.

When someone actually wants to get in an in-depth conversation about things with MS... I say that I get frustrated that their isn't as much "attention" towards MS Awareness as other diseases.... and they give me this confused look, like... "what?"

Well this is my personal opinion, and I'm sure others will agree with me.

When it comes to things like Cancer for instance... it has a big awareness with people and everyone knows what cancer is, and what it does. Because it can kill people...

What I try and explain is.... MS is a disabling disease that, usually, doesn't shorten the life of someone with MS. So, you look at someone who is dying of cancer, their medical costs are high, but it isn't for a normal life span. These costs aren't imposed to them for a persons normal life span, because they usually don't make it that far, which is horrible, don't get me wrong.

But then you look at those who are diagnosed with MS.... where on a normal basis, doesn't shorten the life span of those who have it.... these medical costs DO NOT end... So I feel that MS is a really big burden financially in the long run, instead of just a short period of time.

And then we have these insurance companies, who make things even more difficult! It's hard to get insurance with a pre-existing condition.. I just did an experiment and applied for insurance and entered all my medical information, and I was denied coverage due to my medical history.

I then tried a different company and my cost out of pocket was $600 a month w/ a $1500 deductible, so there's a litte run down for you.

I understand that we can only do so much, being diagnosed with MS.... but in all honesty I think it's bullshit that MS doesn't have the awareness it should.

When I heard "You have MS".... I was like, okay, what's that?? So I'm guilty of not knowing what it was... Once my diagnosing neuro told me more about it... I started crying. Crying for happiness that I finally had an answer, but then crying because I had this disease that had no cure... that I would have to live with for the rest of my life.

So, after my diagnosis by MRI, they did a spinal tap, to check to make sure there was nothing else, and do a total confirmation that it was MS. I went in to see my neuro ( who is not my neuro anymore, btw ) and he stuck me 5 times to try and get my spinal fluid, couldn't do it.

So I had to schedule w/ radiology to get my spinal tap, I went in for that.... they had to stick me TWICE... turns out I have spinal stenosis (narrowing of the spine), oh, and I have degenerative disc disease.

So here is a run down on the conditions I had to enter in on my insurance application:

Multiple Sclerosis, Asthma, Arthritis, Vision Loss, Hearing Loss, Urinary Incontinence, Spinal Stenosis, Degenerative Disc Disease, Acne, Surgery on right ankle, Surgery on left elbow, Anxiety, Depression, Swallowing Problems, Migraines

And I'm only 24 years old... How's that for falling apart for you?? Oh, and remember, according to the Social Security Administration, I'm still able to work... and am not considered "disabled".

On my last MRI, I read the report... I have over 20 lesions in my brain... that's all they could count.

So I guess you could say that I'm angry in some sense, that Multiple Sclerosis is the disease that no one talks about, no one knows about, but yet it has devastating effects. MS has no cure, and it is unsure as to what causes it.

So when people tell me, "it could be worse", they're right, it could be worse, but how can they say that to me.... being healthy, w/ no illness to fight. Yeah, I could be worse, but why do I have to deal with this in the first place?

I'm not wanting people to feel sorry for me, I don't want pity... I want people to get off their butts and DO SOMETHING ABOUT IT!!! The best thing people can do for those diagnosed with MS, is not feel sorry, not sit there and be like "awwww poor you"... it means a lot when you try and make a difference on behalf of those living with MS.

This is why I volunteer, this is why I raise awareness as much as I can, this is why I try and help all those diagnosed, this is why I blog... It might not seem like a lot, but at least it's something.


xoxoxo
Ashley

It's all catching up to me...

Okay, so if you read my last post, "The Disabled taking care of the Disabled"... you kind of know what I've been going through lately. I was doing really well with handeling everything that was going on around me... but I think that it's all catching up to me now.

I've been trying to focus on the fact that I'm going to the AAN meeting in New Orleans at the end of the month... so I've been trying to prepare myself for that and really looking forward to just "getting away". But it seems as if all the stress of the events that have been going on around me, have been catching up to me all at once.

We found out two-days ago that James's Captain passed away, which is heart breaking. I guess sometimes, no matter how much you pray to God for the person to get better, God knows what's best for that person, and needs that person in Heaven to serve a better purpose.

I'm getting really aggravated with the detective that is working James's case with this whole assault thing. He isn't contacting me, and he isn't calling me back when I leave a message or anything. Friday, we went to the neuro surgeon for a follow-up, and this coming Friday James can get the stitches out and return to work on Saturday.

My oldest son Jason, ended up having Pink Eye in both eyes last Friday... and he is over that now as well. My grandpa went to the ER last Sunday for an "Anxiety Attack"... and I'm just like okay, what else is going to be thrown at me... cause I really don't think anything else can be thrown at me. Well, I was wrong.

I've been really fatigued lately. The adderall is helping with my fatigue, but it's my body that is fatigued... if that makes any sense. And then this morning I woke up, to have the whole left side of my body hurting and weak. I'm like oh you have got to be kidding me.

I'm wondering if my body is just reacting to the stress I've been put under the past two-weeks... or if something is actually going on inside my head. I'm hoping that my body is just reacting to the stress. I've contemplating calling my neuro, to see what I should do. I don't know if he would set me up for a round of steroids, just to be sure.

I don't know why I'm sitting here contemplating calling him... I guess in the back of my mind, I don't want to have to hear (again) that my disease is progressing. Because that means I'm pretty much out of options... and they would look at me being Secondary Progressive MS... which I've thought that I am this whole time.

Another part of me, just doesn't want to show any kind of weakness right now. Because I'm having to be the strong one and hold everything together right now. I just don't know how long I can put on that act that everything is okay. I just am waiting for someone to see through my lies that I'm doing okay.

I've been saying that I'm doing okay for so long now, I started believing myself... in a way at least. I'm hoping that the coming weeks are going to settle down so I can just take a break and relax my body and mind. I just don't want to think about anything, or be depended upon to do something for someone for a whole day. Lost cause, right?

I think that I'm just going to suck it up and call my neuro and tell them the stress I've been under and see what they suggest. We will see where to go from there, and I will keep everyone updated.

I'm gonna go watch a movie with my youngest son now, see if he will just RELAX today! I might wait a day to call neuro now that I think about it, because we did just get a "cool front" and that can contribute to why I'm feeling the weakness and pain in my left side. Fingers crossed?

xoxoxo
Ashley

Here is a picture I took in my front yard... enjoy:
http://creativecenter.msworld.org/gallery/photography/texas-blue-bonnets

The disabled caring for the disabled...

Well, let me tell you first off that this past week has been EXHAUSTING! Last Friday, one of the captain's from James's work went into Cardiac Arrest and has been in the hospital on life support. Then the next night... Saturday night/Sunday morning... James and I went to have a beer to let off some stress. I of course was sitting at the bar, because I can't walk around well. All of a sudden all of the guys we were there with went running towards the bathrooms. I'm like great, they are fighting someone, or something. I go back there and James, my husband, is laying on the ground in a pool of blood. 

Apparently, he was turning to walk in to the bathroom, when some RANDOM guy sucker punched him. It knocked him out, he hit the floor and split hit head open. So, this guy... just hit him for no reason and took off out the back door. So, James was rushed to the nearest trauma center hospital, and I was riding shot gun in the Ambulance. 

We get to the ER and they did a CT scan, he had bleeding in and around his brain, with brain swelling. So he was admitted to the ICU (two rooms away from his captain that has been fighting for his life). He got discharged on Monday since there was no progression in the bleeding and/or swelling. We are going to the neurosurgeon today for a follow-up appointment, to see where we need to go from here. 

He has been out of work this whole week... and has had to sleep on the recliner for elevation. So I've been sleeping on the couch to be there with him and wake him to take his meds. Needless to say, I haven't slept in my actual BED since last Friday night! 

You know what they say, "when it rains it pours". So, now you know why I haven't been posting lately, because my time has been consumed with taking care of him. His dad took off work this whole week to help me with him and the kids. Thank goodness for that. 

This morning, Jason woke up to get ready for school, and come to find out... HE HAS PINK EYE! I'm like... REALLY! What else are you gonna throw at me in the next week! James and I actually went in to the ER on Wednesday night, because he was running a fever, and they wanted to check for any kind of infection... no infection, he is having what they call a neurogenic fever? It's so hard to watch him just be in pain and sleep all the time. I guess I'm getting a taste of what he goes through on a daily basis seeing me in pain... 

Everyone is worried that I'm going to go into a flare, from all the stress that I've undergone this past week. While I'm trying to take it easy when I can, and keep my stress level down... it's still hard to keep my stress level down, with bad things continuously happening all around me. 

During all of this, I'm still trying to keep the house maintained and everything... and be there for the kids... when all I want to do is SLEEEP!

Oh by the way, last Thursday, I called my neuro because I was extremely fatigued.. I guess the Nuvigil just decided not to help me with my fatigue anymore. So I discontinue the Nuvigil, and I am now on Adderral. It's helping with my fatigue a lot, considering everything that is wearing me down. 

Well, I'm gonna go check on James, and try and get some of the blood out of his hair... the people at the hospital, stitched up the back of his head without cutting his hair, so all of his hair is matted down by the stitches... Hopefully he will get the stitches out today! 

I'm hoping for some sort of GOOD news from his neuro surgeon appointment today, but we will see. I'll keep everyone posted when I can! 

xoxoxo

Ashley