Why me?

Why me??? It's something I ask myself everyday. Why did MS come to me? I like to think that it has come to me so that I can educate and aware others about the disease and really make a difference... but then I wonder is that even a good enough reason? There isn't a good reason as to why MS has come to me... and after years and years of research... they are still stumped. I mean, it's not like I'm effected my noticeable "progression" everyday... but I am effected by the symptoms. Every morning when I take my meds, it's like good morning MS, how are you today? Are you gonna kick my butt... or are you gonna take it easy???

Growing up I was such an athletic person... always active and doing things and now I just can't. I always tried something ya know... before I said I COULDN'T do it... but now I just already know... that I can't. I have also been gaining weight because I CAN'T do the things I used to do... I CAN'T be as active as I was... and if ONE more person tells me that there is this "diet" that's going to "fix" me, I'm going to reach back and slap them.... If a "diet" could fix my MS.... then a lot of us living with MS wouldn't be reminded of our MS every single freaking day.

I ate healthy... stayed active... look where that got me?! Do I need to "try" and do more... yeah... do I want to... No. Because I know what will happen and what I will feel when I DO try and do MORE. I can't even stand to fold laundry for goodness sakes... Sorry that this is a "pity me post" but I'm tired of everyone's "fix me" ideas... just shut up. Do I want to lose weight... yes... is working my body out like I used to worth it... No. Sorry, but doing my work outs that I used to do... is not worth the consequences I will pay, after it's all said and done.

Nobody knows what I'm feeling... or what I have to go through on a daily basis... so I'de really appreciate it, if everyone's "advice" would have a mute button... so I don't slap them. Sometimes I wish that these people could feel HALF of what I do on a daily basis... then tell me all your advice again and see how much you like it. I'm 24 years old and I feel a lot older. I understand that it could be worse... but I still ask, why me?? I have too much crap I've gotta do and too many people & things I have to take care of to deal with MS. When I went to the doctor before I was diagnosed because my face was numb... and I had my MRI... I thought they were going to tell me I had a pinched nerve or something.. talk about a slap in the face.. or punch in the gut.

Everyone always tells me that my MS is different than others... especially at my age... my MS just won't let up... it's like... when people ask me, "how do you feel today".. oh  I'm fine... when honestly... things don't really get any better. I still have the constant pain, I'm still constantly forgetting things, I'm still constantly tired... but I don't want to say that, cause then I'm just "whining". Seriously, I think I need a slap a stupid button. I'm tired of sitting here relying on doctors to tell me what to do when THEY don't even know what I'm going through... they only "know" through text books... not actual experience with the disease.

I know as I'm typing this a lot of people are going to feel sorry for me, and that's cool... but don't tell me your sorry... DO something about it... raise awareness.. support me in my fight against MS... do something besides say, "I'm sorry", cause sorry doesn't cut it. And I know that a lot of people reading this that have the disease, you're just sitting there saying to yourself... "Damn, she hit it dead on with this post." And you're damn right I did.

What people don't realize is those with MS, we DONT KNOW what our MS is actually doing, unless we have an MRI... We don't know if we are progressing... because just cause we are in a "flare".. it doesn't mean it's a NEW flare... or it could be a pseudo flare.. or it could be or symptoms acting up... I just honestly think that people need to do their homework on MS before they sit here and try and voice their opinions. Tell ya what, if you are reading this and you don't have MS... put those kitchen gloves on and then put on a button down shirt and try and button it.... or walk around w/ one swimming flipper on... spin around in circles then try and walk "normally"... this is just a ounce of what we have to deal with... this isn't the fatigue, the spasms, the nerve pain, the vision, the weakness, the urinary issues, the sleeping issues, the walking... the hand coordination...etc. etc. etc.

Okay, I think I'm done w/ my vent...

xoxoxo
Ashley

Very accomplished but hurting...

Well, it's taken me all week... but my house is ALMOST all the way clean. I feel very accomplished... but hurting at the same time... I never would of imagined back in the day that cleaning my house would be such a chore. What used to take me one day... now takes a week. So by the time the whole house has been cleaned... there is a mess somewhere, usually the boys room.

I'm glad I have a easy cleaning machine... instead of a broom and mop, I got this hoover multi-floor cleaner... it vacuums, mops and dries... AMAZING. This way, I don't slip on a wet floor. All I really have left to do is clean off my desk & clean off the kitchen bar... but that can wait for now... because I'm having a hard time gripping objects & I really don't want to grip something glass off of the kitchen bar and it break all over the floor.

James did a lot outside... since it's finally nice outside for him to do it. I miss doing outside work, but what can you do. He has been talking about making ramps for the door ways in to the house, so I can stop tripping over the stump, that would be a relief. Stupid feet not wanting to do what I tell them to do. Very frustrating when my body betrays me like that.

I'm probably going to make it an early night to night since I'm hurting real bad... I shouldn't of cleaned like I did... but I didn't realize I would be paying for it like this... even when I paced myself cleaning. The boys are SOOOO ready to go back to school... they are asking me every night "Do I go to school in the morning?" Good thing is next week I can say YESSSSS!

Tomorrow I thought my father-in-law was off work, but I guess he isn't. So it looks like I'm taking the kids with me to go get all my medical records from my neuro and eye doctor. I told them if they cleaned their room today that I would take them to play at chik-fil-a ... so we are going to make a stop there after I get all of my records. Then they can play while I go through all the paperwork.

My right hand is numb right now from over doing it I guess. Which isn't fun, since I'm right handed. Thank the lord for speech recognition programs. I think I wouldn't be able to do anything on the computer if it wasn't for that thing. Gotta love where technology has taken us.

Well, it's time for my assisted shower time...

xoxoxo
Ashley

Boys got me sick...

The boys in their new chairs Christmas morning.

Well, my oldest son was sick w/ a stomach bug... he then shared it with his little brother, who so graciously shared with me. I've been very fatigued lately & out of commission from the stomach bug. That's why I haven't posted in a while. We had a great Christmas though... the boys loved everything that they got.

James stayed home from work today to take care of me & the boys. The boys are better, but I can't take care of them w/ the shape I'm in. The boys are already asleep, so I'm loving this peace and quiet. I've been going through all the medical records I have to send to my lawyer... I also called my new neuro's office to get my records from them & my vision doctor. So I will be getting all of that soon & sending it all in to my lawyer.

I got a heater for outside for Christmas from my mom & I'm loving it... I'm all warm and cozy. James invited people over for New Years Eve so he has been cleaning a lot today outside and in. Probably do more tomorrow but I haven't been much help.

I did get all my laundry done yesterday though, so that's a good thing. Today, I don't even have the energy to take a shower, but I feel gross and I know I need to take one. I will probably have James help me with that in a little bit. I hate that I have to depend on him for everything but I know he would rather me ask then me hurt myself.

The news said we are supposed to be up in to the 70's on New Years.... woo hoo. I don't mind it being in the 70's, but I wish the weather would just level out already. It's killing me going on this roller coaster ride of weather change. Can't really control mother nature though. At least it's not 120 outside like this summer... I couldn't even move a muscle with it being that hot.

I know the boys are ready to go back to school & I'm ready for them to go back as well. It's not wet outside anymore, so hopefully they can go outside with James tomorrow and run out some of their energy... instead of taking it out on the house lol

I really wish I would win the lottery or something so I could afford a maid. I can't even clean my house anymore... it's so pathetic. But remember, according to Social Security I'm supposed to be able to work... it's bullshit, if you ask me.

I'm hoping tomorrow will be a better day & that I feel better so I can get out of bed. Time for me to get my "helper" aka James to help me take a shower and get me in bed.

xoxoxo
Ashley

Starting Tysabri Soon

Me & James... He is my rock.

Okay, this past Thursday I went to see my neurologist and I SAW the lab results of me being JCV negative!! I saw the nurse practitioner & she went over all of the Tysabri information (risks & benefits). The comments I've had on my blog are amazing... and very reassuring, for those who are on Tysabri. The nurse practitioner told me that someone will be contacting me soon w/ a "touch" number & my Dr's office will be getting it approved my insurance in the mean time.

They said it would take about 2 to 3 weeks w/ the holidays being here. So I'm hoping that the time goes by fast because I want to get on a medication. They told me I had to be off of Avonex for two weeks before starting Tysabri... but that's not an issue because I haven't taken it the whole month of December. I'm excited to begin this path of treatment & hopefully have some improvement on everything I've been having issues with.

I still can't believe it's Christmas Eve... I'm excited & so are the kids. Jason was up all night though, with food poisoning... but he is doing much better now & has slept most of the day. Tonight we are going to James's Aunt's house for a Christmas Eve gathering... James is at work right now but he is having someone cover his shift for like 3 hours for him to come to the gathering & see family that we don't see that often.

My mom is here spending Christmas with us... which I'm really excited about! I love it when she is here & helps me with things around the house & the kids... though I feel bad that she does so much. I tried to do the laundry & clean the house before she got here, so she didn't have to do that.... but you know mothers. lol

I'm upset that part of James's present got lost by Fed Ex... so I won't get the other part to his deer feeder till next week. I'm wondering what I'm getting.... I can't wait to see it. My dad & step-mom and step-niece came up yesterday to do our Christmas & for me to give my dad his birthday present as well... cause his birthday is the 2nd of January -- and I probably won't see him then.

I've been really fatigued lately, and I don't really know why. I don't know if it's the weather, my MS, stress... or all combined... who knows right? I've been setting up alarms on my phone to help me remember things... like a med reminder and all that. Because when James is at work... I don't have someone here to remind me to take my medication.

James went to the Rec Center yesterday and signed us up for a membership so that I can go up there and do some work outs that I learned at physical therapy. My right side has been weak lately, and my neuro's practitioner suggested I do physical therapy if I don't improve soon... but I'de like to try and do it on my own.. So we will see how that goes.

Well, it's time to start getting ready for the gathering tonight... everyone have a Happy Holidays!

xoxoxo
Ashley

News Release about JCV & Tysabri

Tysabri Talk Tomorrow

Well, tomorrow at 11 I go to my neuro's office to talk about Tysabri -- and if I agree to it, then we will plan my first infusion. I'm pretty dead set on doing Tysabri... I've done a lot of research... and being JCV negative.... I really don't have any worries about it. So about the mess up w/ the tests... they ran it wrong the first time & that's the results I was sent to my phone. My neuro called the lab and had them run it the RIGHT way, not once but twice... and it came back negative.

I'm just a bit worried for the fact that I'm not on any medication right now... and I'm sick. So I know my immune system is firing up trying to fight off whatever it is that I have. If I don't feel better by tomorrow I'm going to call my PCP and schedule a appointment cause I can't be sick, especially at Christmas. I laid around a lot yesterday & today because my body just doesn't want to move right now... not only from me being sick... but because of the constant weather change we are having here in Texas.

I went to the store the other day & I used my handicapped parking pass because I was having a really tough time walking & again I get snide comments about me using my "grandmas parking pass".... like really, I don't use it unless I absolutely need it... and whenever I do use it, I get snide comments! Give me a freaking break already... Just because I'm young -- doesn't always mean I'm in perfect health, morons.

I've been keeping my mind off of everything lately with the volunteering I do with MSWorld... but I still can't ignore everything that is going on w/ me right now. I'm looking forward to Christmas though... James and I have everything wrapped  (he had to do a lot of the wrapping, cause my hands wouldn't let me) God love him!

James is taking me to my neuro appointment in the morning & then we are going to the store to get me some feel good food lol. Yesterday was a tough day at the house... it was the 4 yr anniversary of my mother-in-law passing away. It's so hard... I miss her so much.

Oh, I didn't go my urologist appointment yesterday -- I have to reschedule, because I could barely even move I felt so bad. So, I will be calling tomorrow to re-schedule that appointment. I really wish I could of gone, but what can ya do... when you can't move, you can't move.

I feel like a crappy mom -- my kids have been living off of take-out lately because I can't get up to make them something to eat. This being sick thing is draining me and making things even harder than they were before I was sick. But this too, shall pass.

Well, I'm going to call it an early night, I will update everyone tomorrow about my appointment w/ my neuro.

xoxoxo
Ashley

False Alarm

So.. my neuro's nurse practitioner called this morning. She said my results came back from the lab & i'm JCV NEGATIVE!
I almost jumped out of my seat I was so freakin excited. Apparently the labs sent me the test results that they had messed up on & my neuros office made them re-do it twice for a clear answer. So I go in to see my nurse practitioner on Thursday morning to sign the consent paper & get things set up to start Tysabri.

Tomorrow morning I have my DR's appointment with the urologist, that's a relief. I feel like I'm finally getting on the right track of things & things will get better soon. I still haven't been taking my Avonex -- which is a good thing in a way, because I need to clean my system out before getting on Tysabri.

On a less positive note -- I'm sick :( My oldest, Jason was sick who shared w/ me and luke. Luke isn't bad.. just the sniffles... Me on the other hand is a different story. I have been running a fever and have the sore throat & my whole body hurts from this weather change we're having. I feel like I've been run over by a train to be quiet honest with you.

I'm still excited about the good news... I was real down when I had read that first report saying I was JC positive... because I had already kinda planned in my head my future of being on Tysabri. Tomorrow I'm going to go through all of my records and scan and e-mail all the "vital" information to my lawyer.

Well, I just wanted to update everyone on the good news that I'm JCV NEGATIVEEEEE!!!!!!!!

Time for some meds & bed..

xoxoxo
Ashley

Tested Positive

Well, my phone alerted me earlier that my lab results came in. I had my mom read it for me... and I tested positive for the JC Virus... I guess, in the back of my head I was thinking that it was going to come back negative & I wouldn't have to think about the complications Tysabri could cause... but now that's sometime I have to take in to deep consideration. I'm of course, going to talk to my neuro about it.

I'm thinking that sense I've ONLY been on Avonex... that I'de like to try something else besides Tysabri first, unless my neuro thinks that my MS is too progressive for another drug besides Tysabri. I'de probably look into Copaxone, if I do have the choice. I've heard wonderful things about Copaxone... even though I know it's every day, at least I wouldn't have the change of contracting PML.

Ugh, this feels like being diagnosed all over again, except for the fact that my diagnosing neuro didn't really tell me my options of medication... he just handed me the intro packet to Avonex. So, I guess it's time to really do some research and look at my options.

On another note, Jason (my oldest son) is sick.... and now I'm not feeling well.. It's like GREATTT I'm not on Avonex... so I guess I can just hope and pray that I don't have yet ANOTHER relapse. Because that would just plain suck.

On a GOOD note, tomorrow is my 6 year wedding anniversary, so I don't know what we're doing exactly... but James has something planned up his sleeve. I've been in a lot of pain lately, I don't know if it's cause of the weather change we just had or what, but I feel like crap. Good thing is, I got almost all of the Christmas presents wrapped/bagged. Now I just have to remember what I did with a gift card I bough... cause I can't find it anywhere... Stupid MS. I probably put it somewhere, where I wouldn't forget it... UGH!

Well, I'm gonna go hang out w/ James by the fire :)

xoxoxo
Ashley