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

Holy Fatigue!

Hey there, I finally have time to actually sit down and blog about what's been going on in my life. I've been SEVERELY fatigued lately... and all I ever want to do it sleep. It's been horrible. I'm on fatigue medication (nuvigil), but it seems as if my body is "used" the medication I guess. So, looks like I'm calling the neuro about my options. Before I was diagnosed with MS, but yet still had MS, I was taking adderral... and I had amazing energy and it seemed as if it helped my weight as well. So I'm going to see if that's an option?

So I've been doing some research on things that can make me feel better, naturally. So, I'm doing a natural total body cleanse of all of the organs. Today is day 1, so we will see how it goes. It's a 7-day cleanse. I've heard it really helps out your energy, and so far, I'm not wanting to pass out like I normally am, so that's a good thing, right?

So yesterday morning, I woke up and things were kind of fuzzy as far as vision goes... and later in the day I got EXTREMELY tired and starting getting double vision. I'm thinking that I have just been over doing it when I'm actually awake enough to do something as well as the weather change. I feel better today, vision isn't 100% but it's not as bad as it has been before. When I couldn't even use my phone or get on the computer or drive.

I had my Tysabri infusion last week and I made a friend! I was excited... of course she isn't my age, but it's good to speak to someone about my issues face to face that can relate. So someone isn't just sitting there and starring at me while I'm explaining how I'm feeling, they actually "get it".

I really need to get on the ball with house chores, but I just stare at it instead... it's exhausting just to even think about all the things that I "need" to do... but I just can't convince myself to actually go through with it and get it done.

I'm really excited about going to the AAN meeting next month in New Orleans or as I call it "Nawlins". It's closer to home, so it's like I know what to expect and I won't be completely lost in what I'm doing. James and I have been on the hunt for pink camo duct tape so we can decorate my cane, because I have an obsession with pink camo... and I don't like walking around with something that's "boring" looking lol.

On another note, Jason has been talking to me about Family Fitness Night at his school for like the past month. It's tonight at his school and he really wants me to go... and I'm just thinking to myself, "how in the hell am I doing to do it?" Because I don't want to embarrass him at school because I'm not able to be like the other "moms". And let me tell you, I've been up there and those moms are all like sticks and have perfect make-up and hair. When there are like "dress-ups" at school or something like that, these mom's go all out... and I'm thinking to myself, How do you have enough energy to do all of this!!!

I guess I just don't want to come off as a "bad mom" because I can't do everything that they can... and then the parents not want their kids to hang out with Jason outside of school or anything like that. Jason has been talking about wanting to have a sleep-over and I want to let him. But of course, I want to get to know the parents better & finish with my house "make-over".

I've been looking into summer camps for Jason as well, so that he isn't at home with me all summer long bored. Because I know that with the Texas heat, I'm not going to be able to keep up w/ his energy levels. And I don't want him to get bored or mad at me because I "can't" do things that he wants to do.

I keep thinking to myself what I can do to make things go back to the way they used to be, when it comes to doing things with the kids. And it's like, maybe if I lived in a different climate, maybe if I did this, maybe if I did that... and it's exhausting even thinking about it. I think that today, I'm going to enjoy my quiet time while the kids are at school and James is at class... and just rest so that HOPEFULLY I have energy later on and can go to Jason's Family Fitness Night!

I do know that I need to get some sort of laundry done or else we aren't going to have any clothes to wear. My mom is coming up today and staying the weekend so I know that she will help me out and I really want to get some things done while she is here... like finish cleaning up and organizing the upstairs, so that it can be a "guest-room". We will see how far I get to getting anything done that I want to do. Because my list is a mile long... and I think I could maybe get ONE thing done a week, MAYBE!

So that's my check-in. I'm going to try and look decent to take Luke to school... I wish I could just go everywhere in my sweatpants, sweatshirt and no make-up and hair up in a pony tail... lol

xoxoxo
Ashley

Update on ME!

So, if you didn't know this before.... I'm going to tell you now. Last year I went to the ECTRIMS 2011 meeting in Amsterdam, Netherlands. It is the biggest MS meeting of the year, and next month I'm going to the annual AAN meeting, which it's not just focused on MS, it's about neurology in general. It's going to be in New Orleans, LA and I'm super excited.

If you want to check out what I did last year you can go to: http://conferences.msworld.org/ectrims-2011

So basically I've been preparing for that trip. My husband is going with me again to help me get around, especially since I will have the whole video equipment with me. Louisiana is my neighbor state, so it's not going to be as much of a culture shock, like it was when I went to Amsterdam. So, sorry I haven't been posting much lately, but I've just been preparing for the trip because I want to make sure I have everything in order.

On another note, I checked in with my lawyer about my appeal with social security, and I'm waiting on a date to be set for my appeal pretty much. Now I know that can take a while, but I'm just like... c'mon already! It's like, they can say "denied" real fast, but when it comes to appeals it's this big waiting game.

Today I'm going in for my 3rd Tysabri infusion. I didn't get "knocked out" last infusion like I did with the first, so that's a good thing. I think I'm finally coming to the realization, that when my body says I need a nap, I need to lay down! So I've been taking more naps lately.... and I feel better. I guess I just didn't like to take naps before, because I felt like I was giving in to my fatigue.

Since my urology appointment, I've been doing better in that whole area. I was put on Vesicare, so I'm not having to change clothes like I was before... so now I can just focus on my son not peeing himself! lol

On a good note, Texas has been getting some much needed rain... I'm not gonna complain about that rain EVER, because of the drought we had last year and all the fires we had to deal with. So, bring on the rain!

I've been trying to find summer camps for my oldest son, Jason, so that once he is out of school for the summer, he isn't bored and tearing the house down.

Did anyone see the coverage on the Today Show about MS Awareness Week? Here is the link if you missed it:
http://www.youtube.com/watch?v=TONtM5YX_Sk

I did have someone ask me, how I can be so open in my blogs about all the personal things, like all the symptoms I experience that no one really likes to discuss. And the bottom line is, NO ONE likes to talk about it because they feel as if it's embarrassing and it's just not something you let just anyone know. Well, I say, screw it. I'm not gonna sit here and act like I'm not bothered by those embarrassing symtoms when I am, cause I want other people to know that it's okay to talk about it and that they aren't alone in experiencing it.

I also wanted to discuss the whole people "hiding" their MS.... Like I guess I don't understand how you can hide something that is life changing and something that is a big part of your every day life? I have MS and I don't care who knows... if someone doesn't like that I'm MS and Proud... they can just go some place special... lol

When you have MS, you need to be the voice of it. You need to speak up and let it be known that this disease is out there, and there is no cure. I don't tell people because I want them to feel sorry for me, I tell people so that they understand why I am the way I am at times... So there is no questions as to, why I'm sleeping, or why I walk funny, or why my body jerks at times. Because if there is no explanation as to why I do those things, then it just seems like I'm a basket case.

Letting my MS be known to everyone around me has really shown me, who my friends are and who actually cares. Have I lost friends because of it, yeah... did it hurt, hell yeah. Did I really need those people in my life, nope... they don't deserve to be apart of my life if they can't take me for who I am. I don't care if I talk about MS a lot... I don't care if gets annoying to some people... because MS is a big part of me so it's hard, not to talk about it. I mean if someone was diagnosed with Cancer or something, they would talk about it... because it's a life changing event. Just like getting married, or having a kid.

I honestly think that people don't like me talking about my MS around them, is because they are scared or they just don't know how to respond. It's like, take your butt to the internet and do some research... or ask me to help you find out what exactly it is... don't just run away from something because you don't "get it" . That just makes you a chicken.

I also heard that women who are diagnosed with MS, their marriages end up in divorce. Well honestly, if "the man of the house" isn't strong enough to live with your MS, he isn't a man at all. He is still a little boy that has a lot of growing up to do, and you are better off. So don't sit here and feel like, MS has ruined your relationships with others.. because honestly, it has just shown you who really matters and who can just go to hell.

Anyways, I need to get ready for my infusion, or as I like to call it, "My Vacation"... My 2 hours of no kids, no house work.. just time for ME!

xoxoxo
Ashley

Looking Back...

Lately, I've been remembering my life before I got MS... how active I was and how I was healthy and motivated and always doing something... and I could get by and no sleep, easily. Those were the days, right? I do miss the way things used to be... I wish I could do the things I used to do. Being diagnosed with MS though, has shown me not to take things for granted.

A lot of people live their lives feeling invisible from any kind of wrong doing that could come their way. That was me... I mean, I used to complain about some things in life, but now it's like... why did I complain about the littlest things... They seem so minor now, compared to what I have to go through these days.

With March being MS Awareness Month, I'm really trying to think of ways to help raise awareness about MS. Any ideas? I want to do something different that will stand out!

On another note... Sorry I haven't posted lately. I've been super busy & when I haven't been busy I've been really fatigued so when I get time to rest, I take it. Then I've been dealing with a dog bite. Two of my dogs got into it and I tried to break it up and my leg got in the middle of it and I have a deep puncture wound on my leg. If it's not my MS, it's always something right?

I'm still dealing with the constant weather change of Texas. I swear, I wish I could just pick up and move but not leave the people around me at the same time. While it's snowing in a lot of places it's like mid 70's here. I love the 70's weather, but I wish it would just stay that way for a little bit!

Now on to Tysabri... I haven't really had the energy boost that I had last time... maybe it's because I've been doing too much? I don't know. I wish it would come back though! Lately I've just been wanting to sit on the couch and not move! Just sit here and play Angry Birds all day long. lol

I've had something on my mind though.... I'm wondering if Mitt Romney actually does become our president... I'm wondering if MS will have more attention! His wife has MS, so that's just why I was asking.

You know, used to spasticity was my biggest symptom of MS, but now I'm thinking it's fatigue! And of course the cog-fog that comes along with fatigue. Yesterday morning, I put the juice up in the cabinet with the cups! Can we say brain fart?

I'm gonna go try and get some things done around the house!

xoxoxo
Ashley