Been Too Long

Well, it's been a while since I've posted a blog post... I've been so busy with the kids & the Holidays... and I've had my head stuck in books upon books, leaving reality behind!

It's finally feeling like Winter in Texas... okay, not like the northern states get Winter, but it's under 70 outside, so that's cold enough for us. I hope everyone had a really good Christmas! I know I did!

I'm so ready for 2013... New Year... and BG-12 will be out! I'm just counting down the days on the calendar!

I've finally come to the conclusion that my body and MS absolutely HATE the heat! I feel so much better now that it's not 100+ outside everyday! I'm not saying that I'm 100% free of MS symptoms, but they have eased up a bit, which I'm thankful for... I have been miserable every Summer since I was diagnosed with MS.

I have been having to bake a lot lately & my hands have been mostly cooperative with the process! I have to take breaks here and there - or ask someone for help, but it feels good to be able to actually do something I enjoy... hopefully I can get back in to crocheting soon... I'll take anything I can get, but I of course, am not going to expect everything to magically get better.

I've been giving my  brain a rest lately... which I didn't realize I needed until I actually took it. I usually try and keep my mind busy to challenge myself with games or tasks to hurdle over... so that my cognitive issues don't take over. I'm glad that I decided to take the breather, it's refreshing!

Now all I need is to schedule a massage... while it's cooler outside we have had our "ups and downs" of weather change... so my body has taken the toll. I just need to get some knots worked out.

Having the kids both home from school has been... busy and entertaining, to say the least! Speaking of the kids, they are not wanting to go to sleep...

I hope everyone begins 2013 with a BANG!

xoxo
Ashley

I got APPROVED!

Sorry it's been a while since I wrote anything. I've been super busy and I keep getting side tracked once I try and sit down to type up a post.

So... I had my SS hearing on 11/5 ... and I was APPROVED! AHHHHHHH! I was so excited and I still am! Even though I was having a "tough" time during the hearing.... it kind of made me feel dumb.
I had to keep asking my lawyer if he could help me understand what the judge was asking... and I have a degree in Criminal Justice, so it's not like I didn't know the terms... but he was just talking REALLY fast and I couldn't keep up and I was getting confused very easily.

On one of the judge's questions... he asked me what my neuros prognosis is for me... and I told him, "Honestly, you can't predict MS"... he said, "Okay, but what does your neuro say is in your future for your health?" I said, "Judge, he knows better than to promise me something that he isn't sure he can keep."

I really don't think this judge knew ANYTHING about MS... It was difficult to get through the hearing... Not because I was nervous or anything ( I kinda was ) but he was asking those questions that I don't like thinking about... Like how have things changed in my everyday life... How have things changed in the way I do things with my kids... How things have changed with my around the house chores... I know these are things that need to be asked, but still... it was upsetting to actually have to explain things in depth. Especially how I can't do everything that my kids want me to do... that was the killer.

So, since I'm so "young" (even though I feel like 80 sometimes... especially in the morning when my body does a 'snap, crackle, pop' to get out of bed) I don't have enough "work credits" for SSDI, so I was approved for SSI.

So now, I have to wait for someone to contact me to set up an appointment to figure out my monthly payment, but I was also approved for back pay since April 2011... but my lawyer is gonna try and get it all the way back from when I was diagnosed, since I was diagnosed the day before I had a job interview at the County Jail.

Oh! and I had no idea about this... but I'm automatically approved to be on medicaid? I guess I have to wait for so long to be on medicare? I don't know how all that works.

I'll give more updates on it soon when I hear more.

On another note, I'm waiting to see my neurologist because I might be in a flare? I went in earlier this month from a HORRIBLE reaction to Copaxone in my thigh.

This was 6 days after my injection! This is like
the whole bottom half of my left thigh. 

I injected on the top part of my thigh.. and
this is what happened. 

So, when I went in - they said to have the Copaxone nurse come out and look at it... when she did, she said she had never seen anything like it & was going to contact shared solutions... so I went around this whole back and forth circle of trying to figure out what happened - and they are saying that they think I hit a blood vessel. So who knows? Oh and I injected manually... btw.

I'm hoping their is a cancellation or something at my neuros office soon, because the only opening they have is for the 27th... I am having a new (annoying) symptom too... on top of being more fatigued than "normal" ... I am now having like twitches? I describe it as like my body is having a party under my skin and I'm not invited. It keeps jumping around and it is happening everywhere, even in my right eye.
Here is what it is doing, this is my left thigh by my knee cap. http://www.youtube.com/watch?v=mq_bKS6ikEU&feature=g-upl

I'm keeping note of all my symptoms - and if they are increasing and how long they are lasting... I just hope that it's not a flare. But I haven't been on Copaxone for the 6-month time frame for it to be fully "working"... or at least TRYING to work.

Well - it's time for me to take a break... my eye is doing the annoying twitch thing. I'll update when I can! Oh - and next week I will have 3 blogs posted on MS Conversations (MSAA Blog). Be sure to check it out & let me know what you think! I've been asked to be a monthly contributor to their blog... and I hope it helps people and that others can relate!

xoxo
Ashley

Blogging..

Hey everyone --
I wanted y'all to know that I haven't forgotten about blogging... I've been really busy.

But you can find some of my blogs @ http://blog.msassociation.org for this month.
My blogs will be posted the week of October 22nd.

Just thought I'de let everyone know where to find them :)

xoxo
Ashley

(I think it's just wrong to still be 90 outside w/ mosquitos in October... Just sayin')

"How do you do it?"

“How do you do it?” A question I hear very often! In all honesty, I don’t know how to answer that question. If you don’t know “My Situation”… let me shed some light on it for you.

I was diagnosed two-years ago, August 2010, at the age of 22. I will be 25 in less than a month and it’s not been an easy journey, thus far…

I have two kids, both boys, ages 3 & 6. I have been married to my best friend for almost 7 years and I am a patient advocate for MS. From what I understand, I didn’t take me long to want to do something about my MS. I get confused by this statement at times, because what was expected…? Obviously I was upset and mad and scared and I still am. But am I supposed to stop living my life because of MS? I couldn’t just stop being a mom for my kids… to grieve with my diagnosis. My family and close friends know that I’m a very stubborn person, so I wasn’t just going to “lie down and take it”… so to say.

Since being diagnosed, I am now on my third DMD, Copaxone. I was diagnosed two-weeks after receiving my Associates Degree in Criminal Justice. The day before my interview at the county jail, I was diagnosed, actually. I’ve been denied Social Security numerous times (because I’m not blind and/or deaf from what the papers say). After my diagnosis I had decided to start back at school after a semester break, to work towards receiving my Bachelors in Criminal Justice. Well, I’ve stopped going to college since then… Not because I wanted to… but I was going to get “dropped” if I didn’t. I had started off at the University (that I did from home) in the honors program, and after one semester, I was barely passing getting very close to the “minimum” GPA.

I can honestly say, if it wasn’t for the support from my family and friends… I wouldn’t be doing anything. I’ve found ways to make things easier for myself around the house and with the kids… but that’s not even a “fix” a lot of the time. It’s the help I receive with the kids and the house, etc. that makes life easier.

When it comes to me having MS… it’s made me look at life differently and I have since changed my attitude on almost everything. I have “accepted” my diagnosis, but that doesn’t mean that I’m not still… angry, upset, depressed, confused… the list is endless.

How can someone completely “accept” his or her diagnosis of an illness, when there is so much unknown about it. They don’t know what causes MS, they don’t know how to stop the attacks and they don’t know how to cure it… Everyday you wake up, you honestly don’t know what to expect. I guess that’s the truth in everyone’s life… but I’m talking about simply getting out of bed. My first thoughts are, “What’s going to bother me the most today?? What’s going to hurt me the most today?? Will I need more help than normal??”

So while I’m mad… it’s like a confused mad, cause I don’t even ‘know’ what I’m mad at… Mad at my body for betraying me? Yeah… that’s a big one. Everyone is always worried about someone they love betraying them… but what if it’s your own body and no one has answers as to WHY! Yes, they know how it happens… but WHY? That’s the million-dollar question.

Then there are those statements, “Well, you did it yesterday, why can’t you today?” “You could walk yesterday.” “You were full of energy yesterday.” … Yeah .. well thanks for rubbing it in my face that my body can do whatever it wants when it wants to because I have MS… I’m not trying to be mean… I know that other people are clueless as to what those with MS have to REALLY go through… but sometimes it’s just like… I just don’t want to hear any comments… How about… “How are you doing today?”… “What’s in the news with MS?”… Things like that.

Yeah I know, people who have MS talk about it a lot… and it gets on some peoples nerves. Well this is for those “some people”… If you had or have a kid… would it be rude of me to think you talk about your kids too much? Yes… it would because kids are LIFE CHANGING. Just like an MS diagnosis, it’s LIFE CHANGING… except the fact that kids are a blessing and MS… well… it’s a pain in the you know what.

So in all reality, there is no explanation as to “How do I do it?” It’s “Why do I do it?” I’m not going to stop living my life because of MS… that’s just not who I am. Yes, I’ve had to change my life around… yes it keeps me from doing things… but what OTHER choice do I have? If I was letting MS take OVER my life… I would live in a place that is never too hot and never too cold & alone. Because the MS “triggers” are thought to be Extreme Heat, Extreme Cold and Extreme Stress. So obviously, Texas isn’t the best place for me… so I’m supposed to up and move away from my family and our established lives here? Yes, I can’t stand the heat… but you have to think reasonably.

If people looked closer, they would realized that in the summer time, I don’t leave the AC much… I’m not trying to be rude… I’m just trying not to end up in a wheelchair… again.

Think of me as a “used” battery… and those that are not sick, are a new battery, right out of the package every morning. We all know, that used batteries do not compare to the power (energy) of a NEW battery. So while those who are not sick, wake up refreshed and have enough energy to make it through the day doing “the simple tasks” of work, school, errands, kids, house work, etc. Yes they are tired when they get home, but they did it… they aren’t going to wake up tomorrow and be in excruciating pain from it. Well, those with MS (the used battery), wake up not full of energy, but completely exhausted, no matter how long they slept. Then we have to make it through the day, and we just have to be housewives, like myself, but it’s exhausting… if we had to push ourselves to do more than simple little things (like go to the grocery store), we know tomorrow our “battery level” will be lower and that will not make things run as smoothly… meaning our bodies will tell us, “Hey, you did too much yesterday, so you are going to pay for it for a day, a week, maybe more.” Does that make it easier to understand?

Do I push myself, knowing I will pay for it… sometimes but it’s usually worth it. To have that one-day where, I know I will get beat to hell by MS at some point, but at least I did what I wanted to do that one day and I had fun and I was “normal”. That doesn’t mean that my symptoms have gone away for that one day, there is no “on and off” switch. It just means that I pushed through my symptoms. Now if I was to “push my limits” everyday… that’s just plain crazy.

I don’t know what my future holds… I never knew I would be living with an incurable mystery disease… so I’m taking it day-by-day. I figure, I’ve already been complete wheel chair bound, had one side of my face paralyzed. Yes, I’ve lost vision, hearing and I’m weak on my right side, it’s never improved… there is no guarantee to “recover” from a flare. I’ve been to speech therapy, to help me talk “normal” again; I’ve been to occupational therapy, to help me find ways to be a “housewife” with my limitations; I’ve been to physical therapy to help me regain my strength and balance. Notice I used the word “help” and not “fix” … I can help myself improve my quality of life, but I cannot fix the damage that’s been done. So what I’ve been through in the past with exacerbations, it can happen again… I don’t necessarily have to have a “relapse” meaning; I don’t have to get a NEW lesion, to go through what I’ve been through before. If that lesion gets irritated and inflamed, I just might have to start all over again… and that’s something I have to live with everyday.

I choose to try and be as positive as I can, but even the strong break down. I usually let out my anger and frustrations when I’m alone… but that’s how I get it out of my system when I’m overwhelmed with the feeling. So, you might see me as ALWAYS positive and ALWAYS happy… I try to be around other people, because I don’t want other people to have to feel what I have to feel… to know what I have to go through everyday. By telling you all of this, you can get an “understanding” of what I personally go through, but you will never know.

Being a mother to two wonderful boys, a wife to an amazing husband, a loved one to my supportive family, a friend to my amazing friends and a patient advocate for all of those who live with MS, is “Why I do what I do…”

xoxo

Ashley  

MS has made me realize...

First off, I wanted to apologize that I haven't been blogging lately...
I've been busy with some things with MSWorld, the kids going back to school.... and my biggest time consumer... READING! I can't help it sometimes... I get in the mood to read... & I just can't stop. So.... let's see how I can update everyone on everything...

I "celebrated" my two-year MS diagnosis anniversary on 8/30 ... Very weird, looking back... seeing where I was then and where I am now. It wouldn't seem like a lot has changed about me but it has. I have a whole new outlook on life!

So, I titled this blog -- "MS has made me realize...", So, here it goes on how MS has changed me:
I no longer take things for granted... by saying that, it can mean a lot of things. When most people say they don't take something for granted... they are talking about... love, friendship, work, money, etc. When I say it, as I'm sure many other people with MS can relate, I do not take everyday for granted... I don't take the fact that I can walk for granted (not always well, but I still can), I don't take my family for granted, I don't take chewing solid food and swallowing it for granted ( as some of you might know, October 2010 I had a bad flare that paralyzed the right side of my face, and I couldn't eat solids... and I had problems swallowing)... I don't take for granted... holding a conversation...  at times I get stuck when I speak to someone... my brain has the words I need to say, but the connection from brain to mouth gets confused? maybe? & I just stop speaking for a bit...
The list could go on and on...

MS has made me realize, not to sweat the small stuff... and appreciate what I have in my life at present. Used to... I would be making sure that the "friends" I had here were still my friends and we were super close and did everything together.. when those "friends" ended our friendship, due to my diagnosis, I was upset, I can't lie about that... but now... look what life has given me. I have a best friend, that I haven't even MET face to face... but she is my best friend, regardless. We met at MSWorld.... and we complete each other, in a freaky connected way... I've learned from this.. friendship isn't about how much you "hand out" with the person, it's the connection you have... & the trust & love.

MS has made me realize... that Life is about love and joy, even in the ups and downs. I no longer strive to have my house spotless, sorry but I just don't have the energy to keep up with it 24/7... I have now become one of those.. "Oh crap, someone is coming over" kind of cleaning mechanism... lol

While not all people with MS can say this, or feel this... and I'm not sure if everyone ever will share these feelings...
MS, while it is a burden, it has helped me grow and found true happiness within my surroundings, so for that I'm thankful. While I am not "glad" that I got MS... I can say that I've accepted my diagnosis, and by doing so, I've grown and just feel like such a better person. I can't even in-vision what my life would be like right now had I never been diagnosed... never had MS all together. I have met the most amazing people from this MonSter of a disease... and for that I thank you MS.... odd to say I know.

I think that this is why when people give me that "I feel sorry for you look"... it doesn't bother me, because there is nothing to be sorry about.... I don't want or need pity... just the love and kindness and support... I haven't grown an extra limb due to MS... so I don't like seeing "the look" as if I have...

The bottom line is, I could be better.... I could be worse... with MS, you never know when something is going to happen... or what your going to feel like every morning when you wake up... But I have come to the conclusion, that MS has made realize, I'm not going to live in fear and wonder... of just the unknown. Anything can happen to anyone at anytime... this is why things that used to bother me, don't... I just don't care to involve myself in drama... or fighting... or anything that is unpleasant, because in all reality, my MS gives me "unpleasant" everyday... but I'm not going to let it control my behavior and actions.

I sometimes day dream, what if I could let some of the people around me, feel what I feel... for a short time frame... how would they feel? Pain wise... mainly... I've been dealing with it for so long, it's just a part of my everyday... & as my mother says, "I have a high pain tolerance, compared to the average person".... for instance, when they ask you on a scale from 1-10 how bad is the pain... and "average" person says 8.... I would say.. 4.. because of my pain tolerance... if that makes sense.

Well, I think that's enough rambling for one morning... :)

Until next time!

xoxo
Ashley!

MS isn't always to blame!

Well, I feel the title of this post says it all! Let me give you a run down as to why that is...

So last weekend I had really bad vertigo/dizziness and it was causing really bad migraines that were making me sick...

So I was taking it easy, called my neuro's office... Let them know about what was going on...

Well on Sunday I woke up with really bad lower back pain, which I just thought I slept wrong... & the fact that I woke up to Luke's feet in my back.

So I took some pain meds and it was feeling a bit better... During this time I'm still a bit "woozy" feeling. Monday I woke up with the same exact back pain... I'm like okay, so maybe the weather change we had caused my MS to just irritate me more than it already does.

Well, Tuesday my back pain was just ridiculous to where I just wanted to sleep so I didn't feel the pain. Then I started havin sharp stabbing pains... I was then asked if I needed to go to the hospital for it ( I was actually TOLD to go but I will leave my bossy bestie out of this lol )

So James took me to the hospital, they run their tests... Give me IV pain killer, which never worked... Finally came back with the diagnosis of a kidney infection.

So, that's what I've been dealing wit and that's what I mean about it's not always MS.

I was sitting here thinking that the weather change was just making my symptoms worse and not even contemplating that there was anything else causing the pain I was in.

So moral of the story, even though ER like to blame all of our misfortunes on our MS, it's not always the problem at hand. Now that I'm treating the kidney infection, I'm worried that my immune system is now trying to fight of the infection, and that it will start miss firing on to my nerves.

Hopefully I caught it soon and I won't suffer a relapse due to the kidney infection... Seeing as copaxone takes 6 months to be in "full" effect.

Speaking of copaxone, it's just the icing on the cake right now! I'm having the most irritating injection site reactions even a few days after I ha the shot in the certain injection area... I'm talking about the hard lump feeling and this uncontrollable itching... It seems that the Benadryl is helping, but it's still irritating and I can't be taking Benadryl all the time or else I'll be out for the count!

Alright, just wanted to give an update. Time for some shut eye!

Xoxo
Ashley

Doin' alright... for the shape I'm in

Well, so far so good with the Copaxone. At each injection, I do experience the burning... and with some injections I get that 'knot' like feeling/appearance at the injection site.

I do have to say that it's been rather easy adjusting my schedule to include a shot everyday. I guess it's something that you just have to live with when living with MS. I'm still eager to hear about what's going on with BG-12 in the FDA approval process.

I really haven't been doing a whole lot lately. Seeing as the high has been over 100 each day, that's not including heat index, I'm pretty much confined indoors. The cooling products that I have do help deal with the heat... but of course it's still hot in general.

I did go to a softball tournament and we had a RV at the park, so I had quick access to the AC. When we got there, the ground was so hot... the black rock gravel was melting the soles of my flip flops, if that gives you any idea of how hot it was.

I've basically been a couch potato... reading books. The heat not only makes me fatigued, but makes my cog-fog bad.. and my spasticity. I did switch from Baclofen to Tizanidine... that change is a good change... I'm not saying my spasticity is completely gone... but it's not as bad now.

I have gotten a lot of feedback, concerning the meds I had referred to in my previous blog, so I thought I would give a more in depth talk about that.

So there are three that are being spoken about that are awaiting FDA approval: BG-12, Teriflunomide, Alemtuzumab.

So here is the overview...
BG-12, oral pill (twice a day). It has been on the market since the 50s' to treat psoriasis. The side effects are mild; (i.e. headache, nausea, etc.) and in most cases subside after a month's use. It's also been shown to repair damage done to the myelin sheath.

Alemtuzumab aka Campath and/or Lemtrada, infusion (5 infusions cycle). It has been used for cancer, however, once it's in your system... there is no "washing it out". The symptoms are a little bit more severe than BG-12; (i.e. Anxiety; diarrhea; fatigue; headache; loss of appetite; muscle pain; nausea; stomach pain; trouble sleeping; vomiting)

Teriflunomide aka Aubagio, has been found in Rheumatoid Arthritis Meds. Some side effects (i.e. nausea, diarrhea, colds, mild hair loss and/or thinning, back pain and elevated levels of liver enzymes)

So that's just a basic overview of what's in the MS treatment future. I'm glad to hear the strides they are making in the MS treatment options.

I am still waiting to see more things being studied for the MS symptoms. Yes I understand that they are really striving to help slow progression if not stop the progression in MS... but we also have to live w/ the symptoms everyday. 

I also want to hear more about research that is looking in to, cause of MS.. give us an insight as to how we got this disease in the first place. 

One thing I did find interesting... is I saw a talk with Montel Williams, speaking about his CCSVI experience. He basically stated he still has MS... but his heat intolerance seems to have gone away. So while there were plenty of believers that CCSVI was the cure of MS... I am wondering if it will be looked in to more for the heat intolerance factor for those with MS. It makes sense that if the vein is made "normal" that the blood flow would be the way it needs, and that would in turn control the heat intolerance... just a thought of mine. 

Something else I've heard a lot about, and I also wrote about it before, is MS in the media... how we have celebrities or famous people with MS... and they aren't "representing" MS the way it needs to be represented... and the bottom line is, What the hell is a person with MS supposed to be like? We are all so different... How could we have ONE person representing MS? I guess in my opinion, I want MS to be known, like Cancer... I want people to be educated about MS in general... not so much having one person representing what it is. 

The bottom line is... MS can be disabling... either visibly or not... or both. There are so many ways MS can effect a person... there isn't just one definition of it. If I had a dollar for as many times I heard.. "You look so good"... I'de be rich. The bottom line is, I try not to get upset about that anymore, because they are just trying to be nice... and nobody can "hear" my body screaming from the inside. 

Well that's all from me for now, back to being lazy on the couch w/ a book :) 
BTW -  50 Shades of Grey is AMAZING! 

xoxo 
Ashley

Adjusting to the change

Well, my Copaxone nurse came out on Friday morning and showed me how to inject copaxone.... It burned like hell but I've been through worse.

So I've been doing well with taking my shot... I've been setting an alarm on my phone so I don't forget to take it.

I did however make a "boo boo" yesterday with my shot. I went to inject, hit he button and nothing came out.. (I'm using the auto inject) well silly me forgot to take off the lid cap thing.

So I went to take it off and medicine was leaking everywhere since I had already pressed the inject button... Can we say oops!

This is definitely going to take some time to get used to. But hey, I'm surviving with it. I took a fall Thursday evening ... Clumsy me. It's taken some time to get feeling better, but I'm doing better.

I basically relaxed all weekend, thanks to my mom being here.
Because on Friday night.... Guess who ran smack dab in not the corner of a table... This girl. Double injury!

I feel better now that I got to relax and take it easy, but this heat is still getting to me. I feel bad cause the boys keep wanting to go outside and play and i just can't do it.

So I'm trying to make it fun for them being inside. I think we're going to head to the store and pick u some board games... And I think I'm gonna get them some movies too.

I feel bad that I'm "trapping" them in the house... But at least I can still function by doing so. I try and make things fun for them... since I can't be outside with them.. and I can only hope I'm doing a good job of it.

So all in all I'm not just adjusting to the change from Tysabri to Copaxone... but also the change in my spasticity medication... and this Texas heat. I hate having the feeling that I'm letting my MS keep me in doors... but then I have to sit back and think that a lot of people can't even be outside right now, not just those that have MS.

I try REALLY hard not to let MS control my life... and always be my topic of conversation, but it's hard not to talk about my MS in conversation all the time, when it's effecting me all the time.

I think that's why I'm finding it easier to talk to people who have MS and build friendships with them, rather than try and talk about it with someone who doesn't get it. My husband gets it in a sense... because he in a way has MS... since he helps me and cares for me... but then I just don't want to over load him with all of my feelings... he already does a lot for the MS community as it is... A lot more than a lot of caregivers do.

In a way I feel that with every change I have in a medication to slow progression, it's like going through the whole diagnosis phase again. Maybe third time is the charm? Let's hope so.

Well, it's hot... and it's time to watch some G-Force w/ my boys!

xoxo
Ashley

Goodbye Tysabri...

Well, here is my update to my previous post...
I went to my neuro on Wednesday & we had a LONG discussion about what we were going to do.

So to get the spasticity issue solved, we decided to taper off the Baclofen & start on Tizanidine. Just waiting for the script to be filled and I will start that soon, already trying to taper off of Baclofen but not having the Tizanidine to compensate is very difficult and painful.

So he asked me what I would pick out of the approved medications we have right now to slow progression. I deliberated and eventually answered Copaxone, due to it's success rate. My neuro agreed with me & we put in the paperwork for me to start Copaxone, so just waiting on that at the moment.

I understand that I shouldn't just wait for BG12 to come out... not being protected during that time. I of course would worry about relapsing and my neuro also expressed his concern about not being protected.

So at least now, I can say that I will be taking a medication to "try" and slow the progression. I'm not trying to sound negative at all about taking a med to "try" and slow progression, but none have shown to STOP progression, that's what I'm saying.

I'm also not going to get my hopes up right now, because that seems to jinx it all lol I just sit here and believe there is a plan for me and it will all fall in to place.

Even though I haven't been diagnosed all that long (diagnosed 8/30/10) I have still done A LOT of research and stay very active in the MS community.

I'm really enjoying that there is all of this new information coming out about MS and the trials they are doing. But I'm just sitting here wondering, when the SYMPTOMS are going to be addressed. Yeah, I want MS to be cured... and for better meds to be available... but I also want something to address the damage that has already been done by MS as well.

And while I hear people say "they're getting closer to a cure"... yeah they could be, but how can you be  moving closer to a cure, when you are not even sure of the cause..?

I mean, I just don't want everyone in the MS Community to get their hopes up, like they did when CCSVI was first being brought up. I just don't want statements to be made and not followed through with. It's very upsetting, and there are some people with MS that take everything that researchers say and studies say to heart.

Well, hopefully the Copaxone will be ready for me soon, I'm in a way excited to try it out. I will keep everyone updated on the journey... Be well & STAY COOL! So hot outside! I haven't been going out there at all lol Any errands needed to be run can wait till it cools off.

xoxoxo
Ashley 

My future and MS

Well I spoke to my neuro's office and I'm going in on Wednesday (July 18th) to talk about my options since I no longer feel comfortable taking Tysabri. Also, because they recently increased my dosage of Baclofen to 100mg a day. It's not completely controlling my spasticity, but it is helping. However, the side effects of taking the much Baclofen is really taking it's toll on me, making me extra drowsy.

So, as I'm sitting here, thinking that my only option is going to be to wait till BG-12 comes out... It makes me think about having a flare during that break time... With my MS, if I'm not on a medication to slow progression, it is really aggressive.

I've had people ask me... Well aren't you worried about being in a wheelchair... well with all honesty, I've been in a wheelchair, so I guess I can say that nothing will come to a surprise for me. I've been in a wheelchair, and worked my way out of it. I just feel like I need to focus on my day-to-day well being, and not the what could happen... because nothing is certain.

I know that people see me on the conference coverage (https://conferencecenter.msworld.org/) and think, oh she is fine... I am in pain... every minute of every day.... but eventually you get 'used' to it... and just learn to live with it. I just feel that I'm not going to let MS keep me down from doing what I love, and that's trying to help all those living with MS.

Maybe now that I know more abut MS and what can "cause" a flare, I can help try and prevent flares... Whereas before, I didn't know I had MS.. and I didn't know what was causing my issues.

I guess I feel more at ease knowing that I can have a flare, not being on a medication... then sitting there for a two-hour infusion, wondering if I'm going to get PML. I understand everyone's views... and the fact that the chance for PML does not increase until have 24 infusions of Tysabri... and you are closely monitored. But by looking, the signs and symptoms of PML mimic MS symptoms.

Just a small clarification of my "odds with percentage"... I have two kids... both of those I conceived while using 99% effective birth control... so now you know where I stand on my chances w/ the percentage of chances.

I just have this feeling in my stomach that I'm SPMS... and it's not being said. I mean, there are so many people that have MS...that are older and have had the disease for a long time... and mine is more aggressive than theirs... and they just flat out say, "It sounds like you're SPMS".

So on my recent MRI... I had NO new activity! Yayyy! But, it stil noted that my previous lesions were still inflamed.... even being on the Tysabri.

I don't know where my future with MS will go... but I know that I'm going to focus on the day-to-day things... and whatever the future brings, I will deal with that when the time comes. You have to think that right after I was diagnosed, I had a really bad flare, that left me in a wheelchair/walker & the right side of my face paralyzed. I've dealt with a lot already... and I have the support to deal with whatever comes my way.

I'm in no way saying I'm going to be "miss happy go lucky" if I have a flare after stopping Tysabri... Cause I will be mad/upset.... but that's normal. My outlook on MS in general will still remain the same, and I will still continue to try and make a difference to all those living with MS.

So, for the future of MS, I have: BG-12; Alemtuzumab; & Teriflunomide to look forward to, as long as everything goes as planned.

I have to be thankful about the 'timing' for when I was diagnosed... because look at all the progress they are making in studies, where as, 30 years ago... that wasn't the case. Now I know that all these pharma companies are making all these new findings in medication to slow-progression, but I just wish there was a little more attention on how to help us in our day to day side-effects of the damage that is already done.

That's enough of my rambling for right now, I will do an update after I talk to the neuro on Wednesday... fingers crossed?

xoxo
Ashley

Hello Reality...

I just got a slap of reality in my face recently... Let's catch you up to speed.

I went to see my neuro about increased spasticity on my whole right side. So I got the whole lab results down and a full MRI done last week... and I don't have any NEW lesions... and all of the lesions are still in my brain, so that's good news. I was relieved.

I had that feeling that the increased spasticity was from the increased heat here in Texas... the heat really  messes with my MS and I just despise summer now due to my MS.

So, I got a call from my neuro's office & turns out I'm JC Virus Positive... which they said I have probably been JCV positive this whole time and my previous blood was a "false-negative".

When my neuro first brought up Tysabri to me once we learned Avonex wasn't working my deciding factor was if I was JCV positive or negative. So being told I was negative, I was like alright let's do this. And I love being on Tysabri... no side effects from the medication... no NEW activity, etc.

Now I'm like okay... there has been posted that if you are JCV Positive and you're on Tysabri (or anything that suppresses the immune system) you have a 1 in 1000 chance of getting PML. So... My feeling is... I don't want to be on Tysabri anymore... because I would rather chance getting into a flare with my MS rather than even CHANCING get PML.

I have to think about not just myself... but my family. I have two little kids that depend on me and I have to do what's best for my family... and even taking a chance of getting something that cannot be fixed and has the potential of killing me... that's selfish and irresponsible for me to do, in my opinion.

I know there are many people who are JC positive and on Tysabri that's fine.. it's a personal decision. But I'm sitting here in my mind set thinking, okay... if I continue with Tysabri... I'm not going to be comfortable sitting in that chair getting the medication sitting there wondering, okay is this the treatment that is going to cause the PML..

I know there have been trials done about low risk for those that haven't had a lot of infusions... but thats a TRIAL... that's not a cold hard fact. I mean look at the luck I have...

I have arthritis... I get diagnosed with MS... during the spinal tap and MRIs being diagnosed I get told I also have degenerative disc disease and spinal stenosis. Look at my luck... if something can wrong, it goes wrong... I'm not a negative person when it comes to my medical concerns... I have a positive attitude about my MS and life in general, but I do reserve the right to be pissed off when I please.

That's the thing about MS... you never know what's going to happen. You can be doing fine for like a month and then one day, hello... pain and or numbness or both... with so many other possibilites.

So as of right now, I'm taking a "Tysabri Vacation" for the month of July, so I can continue to think about my decision... However, my decision at this point is to stop taking Tysabri and just wait for a medication to be approved by the FDA, which I'm really leaning towards BG-12!

That's all for now, will keep you posted as things change and or time passes by.

xoxo
Ashley
(stay cool, I know everyone is really experiencing some Texas Weather right now)

MS in the Limelight

Let me start off by saying, I'm not in anyway opposing MS getting noticed more by the media. But as we know... MS differs from person to person.

So when we have celebrities diagnosed with MS... for one... people need to keep in mind, they have enough money to get the certain doctors... maybe not even in the same country... and can have the modifications done to their house, get the best meds out there without having to fight insurance companies and so on and so forth.

This is why I feel that when MS does get in the "Limelight" that it's not really showing what MS really is and what it can really do.

In the news segments, they don't speak about that there are daily symptoms of MS... they just speak about the "episodes" aka exacerbations. They never speak about how there is no way to reverse the damage that has been done by these 'episodes'... they don't speak about the side effects of the medications that can TRY and slow the progression of MS...or the side effects of the medications for symptoms... none of that.

So while it's nice to see that MS is making headlines... I wish it was actually about the 'average' person with MS... not some one who has 10 billion dollars to do what they want with their medical care when it comes to their MS.

In any case, they talk about RRMS, they talk about remission like you are disease activity free like you're living life no even noticing your MS.

Then with the triggers, if you're like m and have heat intolerance ... You can't do a lot about that, I live in Central Texas an the highs this week are 100 and over. And I don't want to live my whole summer inside... But the cooling vest I have now... Does NOT work with this heat. It melts instantly!

There was a recent article about Jack Osbourne being diagnosed with MS... The headline was Sharon being quoted "I don't want my son to die."

I read that and was like ... Really? Ya MS can attribute to death but how common is that? Now they're talking about him doing a lot of supplements and exercising and a special diet. Great! But I've done the supplements some help some don't... I TRY and exercise but yet his only issue is his vision. If I work out I have to be careful cause I will pay for it the next day... And the only thing that I can really do that helps me is stretching and water exercise... I'm no stable enough to do workouts and my spasticity causes so much stiffness it's hard to do a lot, not to mention my right side is weaker than the left and that's my dominant size. And my foot doesn't pick up the way it should, so even walking isn't easy.

So my bottom line point is... If people want to know about MS... They should ask the everyday people about it... Because that's the REAL MS life... It's nothing against the famous people with MS... They are just able to have better resources for their MS. If where they live is too hot.. They probably have a house somewhere cool they can escape to.

Okay that's all from me. I'm actually at a softball tournament and tryin to stay cool.

Xoxo
Ashley

Been awhile... so here is an update

Yeah, sorry that I haven't posted in a while, that thing called life has gotten me really busy... along with a conference I went to for MS in San Diego... (CMSC) ... but I got to meet Clay Walker, which was amazing. 

So what's up with me... I'm just aggravated, to be completely honest with you. I try and be this upbeat person and a MS Advocate... I love sharing my knowledge with others and learning more and helping others with their MS.. but at this very moment... I'm pissed off at MS. 

So let's see... I got put on meds for migraines... basically I would go outside and the heat caused this huge unbearable migraine for me... to where I couldn't eat or sleep or anything. So I got meds for that... but it's still freaking hot! 

My spasticity is like 10 times worse than it normally is because of the heat... and I can't even seem to be outside. It sucks, cause I love being outdoors and doing things outside with the kids and stuff and my MS Spasticity is putting a really big stop on that. 

I feel like a vampire. I won't go anywhere, unless it's at night. Like today... I needed to run errands, but I decided not to even try until there is NO sunlight outside. Which is also a problem, cause I have issues with driving in the dark. So it's like a lose/lose situation. 

I was talking to my mom  yesterday on the phone and I kinda broke down a little bit, because I just can't handle the pain... I try and put on a smile and be there for my kids and do what I can... but as of right now, I'm lazy and I can't do anything. Even though it's cool inside the house, it's still hard for me to move around because my body knows the temp outside. 

I'm also looking for a new car, because for one my car is old... and isn't gonna last much longer... for two it has leather seats... for three... every time I stop, the AC stops blowing cold air. So I've been trying to search online for new cars... but I can't go looking unless my husband is here to take me because my hands will not let me drive during the day. 

I just feel like I'm going to go through this every freaking year living here in Texas. It's depressing, it's painful and it just all around sucks. So that's why I haven't been so active lately. I did however LOVE being in San Diego.. where the high was like 66.... yeah, was amazing. 

I have to go get my Tysabri tomorrow... and I'm gonna try and talk to my neuro while I'm there, because I just can't handle the pain anymore. I'm on Baclofen and Clonozepam for Spasticity... I can't even take hot showers... note, my showers are consisting of a shower chair with a hand held shower head, but that's getting hard to hold to bath myself. 

Sorry this is such a downer post, but I just wanted to let everyone know too that yeah, I try and have the most positive attitude while fighting MS, but sometimes it just pisses me off and makes me not able to do anything. Kinda like the MS is winning right now... The bad part is... it's not even our HOT MONTHS yet... seriously?!

I really need a get a way to see my best friend in Idaho... I just think the both of us NEED each other right now, and not just on the phone. 

A lot of people ask me if I use cooling products... yes, I do use cooling products... still have spasticity... what do you know. The heat also drains me... like I've wanted to sleep all day long and I have fought it... ALL DAY LONG. I don't even want to go run errands tonight, but I know that I need to. 

Well, I'll check in soon... hopefully!

Take care!

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

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