Friday, December 30, 2011

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...


Thursday, December 29, 2011

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...


Tuesday, December 27, 2011

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.


Saturday, December 24, 2011

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!


News Release about JCV & Tysabri

Wednesday, December 21, 2011

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.


Monday, December 19, 2011

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..


Friday, December 16, 2011

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 :)


Wednesday, December 14, 2011

Bad Day

Okay, tonight post is going to be a really big vent session. I really feel like my disability is not being taken seriously by the Social Security Administration. I am 24 years old… Why would I want to be disabled? I didn't ask for this, and who are they to say if I'm able to work or not. They don't live my life everyday… They don't know the pain I experience, not just physical but mental. They don't know the strain it's put on not just myself but my family. No one will understand how I feel until they walk a day in my shoes, and I wouldn't wish that on anyone.

Multiple sclerosis has change my life and the way I live it every day. Here are some of the I cannots: I cannot cook anymore, I cannot clean anymore, and cannot go to school anymore, I can barely type, I can't remember anything, I can't walk for long period of time, I can't mow the yard, I can't take care of the chickens, I can barely keep up with the kids, I can go out with my friends, I'm 24 years old… And I have to wear a panty liner in case I cough or sneeze. In order to make it to the day, I have to take over 10 pills. Taking the medication eases the pain but it never goes away.

I can't explain how upsetting it is prove to someone that I've been defeated. Right now I vent my feelings using this speech recognition program because my hands won't let me type. I don't want anyone's pity, I don't anyone sorry, this is just the ugly truth. I don't want this, I didn't ask for this.

It really upset me, when I heard that someone my age was on disability for being bipolar but yet that didn't physically limit them. I am physically limited and mentally. I not only have multiple sclerosis, I have degenerative disk disease and spinal stenosis and depression but yet the cannots I have talked about are not being taken seriously in my case.

I can't explain the embarrassment I have when I'm talking to someone and I stop in midsentence because I can't say what I want to say. My cognitive issues have been getting worse… It's hard and embarrassing and hurtful. My body has betrayed me. Everything I had planned in life is no longer going to happen and that's something I'm going to have to live with.

"You can do anything you put your mind to"… Who the hell came up with that??? It's hard to prove how I'm affected by multiple sclerosis when I don't want to face it every day, ignoring how I am affected it easier sometimes.

I can't even take shower standing up. I am constantly dropping things. I don't like to show how multiple sclerosis has affected me because I feel like I'm letting it win. Don't get me wrong, I do believe I'm a strong person… But every strong person has their weakness, every strong person have their moments, every rock has a few cracks.

I can't run and play at the park with my kids, I can cook things just not the meal that I used to. Here I thought I was doing everything right… Where did I go wrong??? I understand it could be worse but yet it could be better. I do have friends just not ones that I can see because they live so far away. Anyone I had near me has forgotten about me because I have multiple sclerosis and I guess they think I'm contagious.

I'm trying to make the best of the bad situation, doesn't everyone? Everyone has their low times, and this is mine. I wish I could wake up in the morning and this would be a bad nightmare. They say "what doesn't kill you makes you stronger" I am stronger but I do have my faults I do have my weak moments and I am not perfect. I'm finally coming to the realization that I might just be stuck this way and hopefully not get worse. I'm hoping that they find a cure in my lifetime, because I have a long line to live.


Bring Me To Life by Evanescence

Nasty Weather=Nasty Mood

I don't know what it is... but when it's a gloomy day w/ the weather... my mood copies it. I just want to sleep all day long with the weather like this (muggy & rainy) but I can't cause Luke is home today. Maybe I will get lucky and he will take a nap with me. I can hope, right? 

I called the lawyer yesterday & they told me to scan & send them information from my records that will be viable to my case. So, I think that's going to be my "job" today. I got a lot of wrapping done last night, thank goodness! That's something I don't have to worry about. I still have to go to WalMart and pick up some things I ordered online. It's just getting the energy to get out and do it. I might wait for my father-in-law to get home, so I can go without the kids. Taking them to WalMart is always not a good thing because they always end up wanting, something! 

My vision has been acting weird lately. My right eye keeps getting fuzzy and it's really annoying. I cleaned up the house yesterday, just for it to get all nasty again from the dogs coming inside with all their mud. I wish it would clear up a little outside so I could get some work done outside, even though I should probably just rest like my body wants me to. 

The constant weather change is draining to my body. Not only does it irritate my MS, but I also have arthritis. I'm glad I went and got a massage yesterday, at least that relaxed me a little bit. James went hunting for the week & I really wish he was home already. I don't like it when he is gone... hard for me to sleep without him. Our 6 year anniversary is on Saturday & I have no idea what we are doing... but he has something up his sleeve. I don't like surprises. lol

I guess lately, I've just been feeling a little down. I feel like I've been betrayed by my own body. It's like, yeah being betrayed my someone you care about hurts... but your own body... You're supposed to be able to rely on your own body. My foot drop has been on and off with the constant weather change & the stress I've been under. I feel like a weight has been lifted off of me, now that I'm done w/ school... but it's still the Holidays & that's always stressful. 

It's like, I have so much stuff that I WANT to do... but there is only so much I CAN do... I really don't want to piss off my body and pay for it the next day. I wish Luke was in school full-time so that I could get things done that I want... without having to worry about taking care of him the whole time. I was going to put together their Christmas Bags for school, but he would just want to play with it all, if I got it out. 

So, it looks like we are going to have a movie day and relax until my father-in-law gets home, so that I can run some errands and have some "alone" time. lol 

I'll check in later.. 

When It Rains by Eli Young Band

Monday, December 12, 2011

Busy Weekend!

Okay, sorry I haven't posted in a while. I've been really busy... but the good news is, I took my last final today! So I'm officially starting my break from school! I got pretty much all of my Christmas decorations up, I know I'm a slacker... but hey at least I did it. Tomorrow I get some peace & quiet w/ no school to worry about & the kids will be at school! I might just go get me a massage because my spasticity has been a killer lately.

My dad came up w/ my step mom and cousin on Saturday... that was fun! He brought me a huge bedframe and a water bed that has a heater. So I'm excited about all of that. Sunday we ran errands like crazy and finished up all of our Christmas shopping... it never ends. I really need to start wrapping presents, maybe that's something I'll do tomorrow with the kids in school. I went to James's Christmas Party tonight, just got home not too long ago. My body is telling me not to do anything else tonight & I'm going to agree with it,

My hands have been giving me a lot of issues lately. That's another reason I haven't written in a while. I have that Dragon Dictation: Speech Recognition Program, but it doesn't pick up on my stuttering from my cognitive issues. I'm still waiting to hear back about my blood results about the JC virus... man I hate waiting.

My 6 year wedding anniversary is Saturday, I'm super excited about that. I can't believe I survived 6 years of marriage... with everything that we've been through but at the end of the day, I love him so what can ya do. lol

I feel bad that he has to take care of me sometimes... and that we can't do all the other things we used to. That's one thing about this disease... it doesn't just effect the person diagnosed, it effects everyone else around them.

I still haven't had a lot of improvement on my cognitive issues. This whole not remembering things is not fun at all... and the mood swings are not fun for anyone around me. I should come w/ a warning sign right now. It's like, worse than when I was pregnant. I just snap about anything and everything... and everything gets on my nerves.

I think tomorrow will be good, I can have some time to my self just to relax and do what I want to do, w/ out worrying about anyone else. Everyone needs that time to their self and I don't get it that often, so when I do have that time I'm very grateful. Maybe I can actually attempt cleaning my house... We will see how that goes. I've looked in to getting a cleaning service... but it's so expensive! My mom and I were looking at applying for that Extreme Home Makeover thing... to make my house more accessible for me.

I can barely walk in my room... so, when I'm needing my walker or something, I usually just sleep on the couch. I can't stand to take a shower... & that bathtub is really small for me to maneuver in to sit and bathe. I also need to get a letter from my neuro about proof of diagnosis... so I can apply for some of the medical equipment from the MSAA. I think I'm gonna get all that done tomorrow & also call my lawyer & check up on my case. I first applied for Social Security... October/November of 2010. I'm really hoping that this whole process is just over with and that the Social Security Office realizes that having MS is disabling...

I don't know why, but I've been really distant towards my family as well. I haven't been answering my phone much because I'm just not in the mood to talk. & I think I need to have a notepad stuck to my side so I can write things down because I'm always forgetting something that I thought about five minutes ago. Then I get annoyed with myself that I can't remember!

I'm still not taking my Avonex... my neuros office said that my system would have to be cleaned out for me to start something like Tysabri anyway... so, I think it's for the best. Hopefully with school over & once Christmas is over, my stress level will go down a bit.

Well, my hand is not cooperating w/ me anymore. So I'm going to call it a night.


Broken by Seether, feat. Amy Lee

Friday, December 9, 2011

Foot Drop Anyone?

So... I've been under a lot of stress lately & yesterday I was at a friends house just relaxing (for once) & hanging out and when I got up to leave I realized my right leg wasn't... stable. On the drive home, James was driving, I noticed my right arm wasn't up to par either. When I went to get out of the car... my leg didn't want to "get up and go". I had a cane inside the house so I was using that, but it was hard considering my arm was weak along w/ my leg. (same side)

I decided to just get some rest... thought I might just been having a lack of sleep kinda thing. I woke up this morning and I could walk around, but not easily. I'm still hoping the steroids really help out w/ all of these symptoms. It's like... one thing after another... I get surprised by something a lot lately in regards to my MS. I'm just going to write it off that I'm under a lot of stress lately, due to school and Christmas and all that stuff. Hopefully, it will resolve itself... because something ELSE to deal with from my MS... just isn't something I ordered. lol

I have one more final left... I wish I could just take it and get it over with, I'm just ready to write off school for the time being. I really need to focus on my health & family life... not my GPA. I can say one thing I want to be over with before finals.... these stupid heightened emotions from steroids! I am NOT the kinda person that cries a lot... and I've been a big baby lately, and I don't like it.

My dad called & told me he is going to come & visit me tomorrow... whether that really happens or not, we will see... but it's the thought that counts, right? My mom is still up here... I'm not sure when she is leaving, but I wish she didn't live so far away. I know the boys miss her when she is gone... especially how she spoils them!

I forgot to call my neuro's office today... I have to get an approval on a refill of my Cymbalta... & last night, the pharmacy said that they still hadn't heard back from his office. I'm really gonna be pissed if I can't get a refill on my meds because the pharmacy didn't hear back from my neuro's office. I'm not dependent on Cymbalta for just ONE thing... it helps w/ my emotions (depression, anxiety, stress) as well as my neuropathic pain. Last time this happened with my old neuro, when I was on Prozac... I had to go without for like ONE day & I ended up having an anxiety/panic attack. Not the best feeling in the world, I can tell you that much.

We got most of the decorations up inside yesterday -- minus the tree. Our fake tree is, no good. So, we're going to get a new one this weekend... then we can decorate it. Hopefully we can get all of the Christmas stuff up by the end of the weekend... then I need to start putting together the boys gift bags for their school parties. I have to go to James's Christmas Party on Monday Night... that's always fun! They always request that I bring Sopapilla Cheesecake ( if you haven't made that/had that... here is the recipe: Sopapilla Cheesecake ) It is probably one of the easiest desserts to make that everyone loves!

Well, it's been a VERY long day & I'm gonna make it an early night & get my butt to bed.
Take Care Everyone!


Thursday, December 8, 2011

Hello Steroids!

Well today was my last day of steroids. They gave me Lunesta yesterday after my infusion because I couldn't sleep the night before. So last night I took one pill of Lunesta... didn't work after a couple of hours. So I took another that they had given me & I finally fell asleep. Did anyone notice that your emotions are like 10X heightened on steroids?! Holy crap! For one, I got like a million things done yesterday. But my emotions are on edge. I'm not an emotional person... and holy crap! I think it's bringing everything out that I keep locked in... NOT COOL ROIDS, NOT COOL!

Getting Roids w/ my bag of Jolly Ranchers.
The jolly ranchers help w/ the nasty taste!
I'm hoping that the roids will help my symptoms die down. This whole cognitive function crap & swallowing issues, it not cool. I am looking forward to my urology appointment. Just so I can get some damn relief, hopefully. I'm supposed to get my results back from my blood work that week as well, to see about the JC Virus, or whatever. While I was getting my infusion these past couple of days, I spoke w/ others that are on Tysabri & they are handling it very well. That gives me some type of relief... I know we are all different... but it's always nice to hear a good thing about a possible drug you could be on, especially one that slows progression.

I went to walmart and got some more things for Christmas decorating. We are going to do that tonight w/ the kids. I got a singing dog for over the fire place, he is Santa's helper. I'm gonna tell the boys that the dog reports back to Santa.... maybe they will behave more (yea right). It's a worth a shot though.

Jason, my five year old, has been very worried about me lately. They both saw my bandage for where the port was for my IV. It's so nice to have such a young innocent kid just be so compassionate and loving. It made my day. Luke, my two year old, doesn't really understand anything. He just knows mommy has "owies" as he says.

So i've been doing some research... and I've decided to do the "Swank Diet". No red meat for a year.... EEK! But I can have chicken... just don't tell my chickens! I think this evening w/ all of this energy I have I will start wrapping presents. I have one more final on the 12th that I really need to study for, so I'll probably end up listening to lectures later. The good thing is, that most of the questions come from previous exams, that I have typed up and have the answers to that she gave us.

You know what really got me "irked" today... I used my handicap parking pass because I've been having a "lazy leg" aka foot drop. People just stare at me, we went to IHOP this morning, and when we went back to the car, there were people starring at me from inside the restaurant... HELLO! MIND YOUR OWN BUSINESS! < see what I mean about emotions heightened. It's like do I need to wear a sign on my forehead that says I'm a young person w/ MS... I mean holy crap. I don't LIKE to use my handicapped parking placard... but you gotta do what ya gotta do sometimes.

With all of this stress going on lately, my vision has been fizzling in and out... but that's because I have Optic Neuritis in both eyes. Again, the steroids should keep that under control. Once I get James to decorate my cane, I'll have to post a picture. It's getting him away from all the hunting, to actually decorate it... that's going to be a difficult task. He did a shoot a deer the other day, HELLO DEER SAUSAGE! << I have an obsession with dried deer sausage.

Anyways, today in the infusion room, I was talking to his lady who has had MS for a long time. She had this cute phone cover of a picture of her young son on it.. he is 15-months old. She said that she felt perfectly fine while she was pregnant... then after she had him, BOOM a horrible flare hit. That just goes to show that pregnancy does put your MS in to remission. I know they have a drug on trial for women... to make their body "think" they're pregnant... I just don't know if I would WANT to feel like I'm pregnant lol Hello Hormones.

I'm really trying hard to get into the Christmas Spirit and do everything I can w/ the boys to make it a blast, but this time of year reminds me of what we went through 4 years ago, the abrupt loss of my mother-in-law at age 52. James and I were in New Mexico celebrating our 2 year wedding anniversary (our anniversary is Dec. 17)... she died Dec 20th, 2007. So it's always a rough time this time of year, but we make it through it. Jason said that God needed a Angel to teach the other angels. ((She was a 2nd grade teacher)). Even though I miss her like crazy, I have to think that God has a plan for all of us. That's what makes me think that MS is only for STRONG fighters... Life isn't easy... and I always have to think that there is someone out there that is worse off than I am.

Well, I'm gonna start getting decoration out... I will catch up soon. I hope everyone is having a fun time preparing for the Holidays!


Grandma Got Run Over by a Reindeer

Tuesday, December 6, 2011

First Day of IV Roids!

Well, I had my first day of IV roids today. I'm relieved that the process is starting to recovery. So I go tomorrow for the Blood Test for JC Virus at 9:00am then I go for my IV Roids at 10:30am. Then my last IV roids is Thursday at 9:30am. Well I have a lot of energy, that's a benefit of the roids. I have a "port" in my arm for the IV roids for the next couple days... let me tell ya how comfortable that is. I'm like physically tired but not mentally, if that makes any sense. I have realized that with the IV roids that my wrists, elbows & knees feel like I'm being pinned down after a couple of hours of getting them. It goes away, but it's still weird. I guess I've gotten used to it from previous IV roids but it's still not fun.

I'm hoping that my cognitive issues get better with the steroids. I'm so tired of having all this brain fog. The gout has gotten better, but it's not completely gone. I got a cane today... tomorrow when I'm getting my appointments done James is going to decorate it with pink camo. I can't just walk around w/ a plain jane black cane, not my style.

I've gotten almost all of my Christmas shopping done, now I just need to get James to wrap it. I don't think there is anyway that I can wrap them to where they look, decent. My hands aren't going to let me. I even have issues turning pages in books... how am I supposed to wrap things. I think we're going to put up the Christmas decorations tomorrow when James is home from work. I hope the boys are going to be excited about it. We aren't doing a real-tree this year, because of the drought Texas had this past summer with the fires... The Christmas Tree Farms didn't make it & whatever they had is gone. So it looks like we're the fake route this year.

I have one final left, thank goodness. I'm so ready to have my "break". I've really been looking into writing this book. I think after the holidays I'll get the ball rolling on this whole book thing. I feel really inspired by my followers on this blog and the encouragement everyone gives me about my writing. I've never felt so appreciated just for my words. I can't even describe the feelings that I have towards everything I'm doing.

So what are your thoughts about Tysabri? I'm kind of excited. I just feel that Avonex was helping w/ my old lesions but not stopping new ones from forming. I'm trying to get in the spirit of the Holidays, though it's hard with all this going on. I just really feel like getting back to a "normal" schedule is really going to benefit me.

I'm trying really hard not to stress about Christmas, but who doesn't? It's a hectic time & I'm lucky that I got pretty much all of the shopping done online, or else I'de be in BIG trouble. I do have to say that the only thing I don't like about the steroids... is that they make me hungry.... A LOT. UGHHHH! Someone take all of the food away from my home please? lol I'm snacking on fruits so that I don't gain a shit ton of weight. If I need something more filling... I'll have like a smoothie or rice... there needs to be like a guide to be on roids & not gain weight! lol

Well, I'm gonna be productive with some studying. Trying to look for upside to my down... I'll find my way.


Monday, December 5, 2011

Changes coming my way...

Well I heard from my DR's Nurse Practitioner & I as of right now I have "active"lesions... meaning I'm in a flare. I start 3 days of IV steroids tomorrow and I will be picking up a lab paper tomorrow to get some blood work done to test for the JC virus, to see if I can go on Tysabri. I would be lying if I said I wasn't scared... who wouldn't be? They said that I don't have to take the Avonex since it's not doing what it's supposed to, so I'm not going to... because the side effects kick my butt the day after.

I woke up this morning w/ gout... that's a lot of fun, not really. So let's see... I have my urology appointment on the 20th, that will be a relief to go to. I told my DR's nurse that I had decided to quit school for right now, because of my cognitive issues. I also updated my lawyer on everything as well... which I need to do again, since we decided I'm getting IV steroids and everything. Hopefully the steroids will help my brain function & swallowing problems. It seems like the swallowing problems have kinda gone down a little bit but my cognitive problems have been on the rise.

Hopefully I can get everything settled about what medication i'll be on and when... they said it would take like 2 weeks for me to get an answer about my blood work checking for the JC virus. Isn't that PML? I don't know... my brain is toast lately. I got two finals out of the way, one more to go. I have almost all of my xmas shopping done, which i've done from home.

I'm relieved that I finally heard from my doctor's office... but I'm still scared. I was just so used to my usual routine of medication, so this is throwing me for a loop. Well, at least it's only a once a month infusion instead of a weekly shot, right? I'm not looking forward to steroids because I'm always hungry when I'm on them. But then I'm hoping that they help out with w/ increased symptoms because they are getting on my nerves.

My mom is staying with me for the week to help me and she wants to go w/ me to my steroid infusions and all that "fun" stuff. So I'm thinking that since I'm going to have a "break" from school that I'm going to focus on my health & see if I can write a book or something. Hopefully I can get this social security stuff figured out during that time as well. I need some sort of income... especially if my student loans are going to kick in for paying them back. I'm just ready for some relief in all of this. I feel like I went from being good to everything going crazy in like 2 seconds.

Anyways, I'll do an update tomorrow after my infusion and blood draw for the test of the JC virus.


Use Somebody by Kings Of Leon

Saturday, December 3, 2011

What's my next step?

Look I'm "normal"! 
Well we have a severe cold front coming through. Good thing is, it brought a lot of rain that we severely needed... Bad thing is, my body is going crazy with the drastic weather change.

I had a really busy day today. I got one of my finals out of the way today... I have two more to go. I went to my cousins graduation tonight. I'm in my way home right now and I'm freaking exhausted. I didn't have my meds with me so I had to duck out early to head home and get me meds.

I'm kinda transitioning to this whole urinary issue. I had a drink during the graduation...but I didn't drink as lug a I normally would because I didn't want to have to get up any to the restroom in the middle of the graduation. ( I was sitting in the middle of the row.)

I didn't take the boys with me because I knew they wouldn't want to sit there and listen to people talk the whole time. My feet are killing me though, from all of the walking around downtown. I'm in a somewhat better mood today, minus the pain. It toon me an extra 15 minutes to get out of bed this morning... Than it usually does.

Im coming to the realization that everything happens for a reason and God would never hand me a challenge unless he knew I would overcome it. I'm trying to keep a positive attitude through everything but everyone needs that time to be pissed off when things don't go the way you want them to. Just because I seem negative here and there it's not my long term attitude towards the situation... If that makes sense.

Everyone keeps telling me that I need to write a book... And since I've hear it more than once from more than one person... I keep taking it into deep consideration. I get so excited and a sense of joy when I read that my writing helps others. Even when I'm pissed off and throwing a fit about something... It's like someone else can relate and thanks me for saying it like it is.

So I'm assuming once I talk to my doctor, he is going to suggest that I change medication to slow progression and I keep going back and forth on my plan but I'm thinking more and more that instead of switching to Copaxone... I'de to go to Betaseron. I really thought that the whole diagnosis process was a hard time for me... but being used to MS & the symptoms it brings and not knowing I was getting new lesions when I was... it's like that same stress in a different manner. It's like, you already know a lot more about MS... but it still seems to come and stab you in the back. I thought my MS and me were good buddies there for while, until I got the knife in my back.

So what are y'alls thoughts on this... what med should I switch to from Avonex... should I write a book? If I did take the time to actually write a book, would you read it? I guess it's just hard for me to wrap my head around the fact that my vents/blogging are actually words that help others... that others can relate to. I mean, I know I'm not alone in this battle... but I know that MS is different for each and every one of us... so to know that others are still experiencing the exact same things as me... is odd to hear at times.

I wouldn't mind going to a shot that is more frequent AS LONG AS IT'S DOING WHAT IT'S SUPPOSED TO! I'm also going to get a "proof" of diagnosis from my neuro and send it in to the MSAA & see if I qualify for that 4 wheel/seat walker. Oh! I'm gonna go get a cane tomorrow... just a light-weight folding black one... and then I'm gonna go to the arts & crafts store and get some pink camo design and pimp out the cane. I can't find a pink camo cane to save my life... and I have a slight obsession w/ pink camp. I even have a shot gun that is pink camo.

Anyways, my brain is done for the night... I'm gonna go to bed. Comment on my blog & let me know what you think to the questions I asked. I really like to hear the feedback. It also encourages me to keep posting, like what I'm doing is actually worth it.


Tattoo by Jordin Sparx << Another Multiple Sclerosis Remix that I love.

Friday, December 2, 2011

Picked up my results today...

Well, I haven't talked to my DR about my results... but I got them in. The results paper said I have 3 new lesions, since March of this year... and in total I have MORE than 15 lesions, in my brain. Check out what's "lighting" up right now...
In the frontal lobe... behind my "eye" it looks like.
Well that explains things... I was very upset when I read it, because I felt that the Avonex was really doing it's job, but I guess not. It's like getting those words all over again, "you have MS".. except now I'm wondering... okay, but what kind of MS do I REALLY have?? 

I know stress isn't good for those with MS... so I've decided to take next semester off and focus on my health. I was doing really good w/ my MS & school, until now. I just don't think I can handle it right now. My GPA has suffered... and now I'm suffering. It says that the frontal lobe controls your THINKING and your personality.... maybe that's why I haven't been doing as well as I normally do in school, and why I'm a "moody" biatch. 

I went in to the MRI thinking, okay... I know there is something going on... but I never thought there would be NEW lesions... I thought my pre-existing lesions would be inflamed. Hopefully I will hear from the DR on Monday. I'de like to hear his take on all of this... and I know that we are going to talk about switching medications now. It feels like starting all over again, honestly. Here I thought I was doing great w/ no relapses, when I was wrong. I guess it's because these 'attacks' weren't as noticeable as the ones I've had before. I guess that's why I don't get paid to think, right? 

So, since I'm not going to school next semester, I'm going to take that time to focus on my health & this whole social security mess. Maybe now they will see, that I really AM effected by MS. I can't even go to school because of it... that's saying something. If I can't do a online schooling... how can I work? 

I actually wrote a poem this morning... here it is: Invisible Illness... I Think Not 
I wrote one a while back too: Invisible Feelings

Well, I was having a productive day and studying for my finals... and that is now at a stand still. My brain just can't wrap my brain around anything right now. I think I'm in some sort of shock... to be honest. Right about now, I feel like just taking my finals and getting them over with, not caring the about the results of them. 

I know I come off as a strong person, who can make it through anything... I will overcome this but I'm just emotional & upset right now. Right when I read the results, I called my best friend who has MS and just started crying and she just knew what I was going to say. It's like we are linked together... predicting each others words and thoughts. It's freaky, considering we have never "met" each other... but she is like the sister I never had.... something else that's freaky, my name (Ashley), is in her last name... lol Both of our husbands names are James as well. I'm telling you it was meant to be... but seriously, I'de be lost if I didn't have her. 

When I got home, James held me & so did my mom... but they can't really understand where I'm coming from, no matter how hard they try. I'm debating on if I want to even take my Avonex shot on Sunday... why stab myself w/ something that obviously isn't working... and then have to put up w/ the side effects of that medication. Well I'm gonna go eat dinner and just.. take this all in. I'll check in when I have time, I still have a busy weekend ahead of me... though I don't want to do ANY of it anymore. 


Numb by Linkin Park  << Multiple Sclerosis Version

Thursday, December 1, 2011

Still no word on MRI

Okay, I had a VERY busy day today! Got up at 6am to get Jason off to the bus, got Luke dressed for him to go to school, made his lunch all that fun stuff. James and I took Luke to school, went to his grandma's house to pick up one of the boys presents that was shipped there. Went to the post office, then to the feed store to get chicken feed. FINALLY came home so I could study for my finals.

I bugged my neuro during this a little bit, still haven't received my MRI results, which is VERY annoying. So, I got some studying done... not sure if I'm going to remember any of it, but hey, I did it. I did ALL of the laundry today & now I'm washing TWO pairs of Luke's shoes, because not only did he go "mudding" yesterday, but he did it again today! I took the boys to Chik-Fil-A once Jason got off of the bus, so that I could get some reading done for Economics & they could play... but I got to pre-occupied in watching them, to make sure they were okay, to get any reading done.

I'm crossing my fingers that I hear something about my MRI tomorrow. I hate this stupid waiting game... And to top it all off, there is yet ANOTHER weather change coming to Texas & it has all my symptoms slapping me in the face, AGAIN. Along w/ the stress of finals & the holidays, I just want to be a cave woman right about now! lol Used to the only thing that would bother me about the weather change was my arthritis... now it's that and spasms and everything else in the book. Talk about "slamming the book down on me".

I just feel like I'm being diagnosed all over again & it's stressful and I don't even have time to really have a a social life outside of all of this. I mean, not like I have a lot of friends here anyway, but you know what I mean. It's pretty pathetic on how fast people drop you when they find out you have MS... or something like it. It's like they think you are "contagious" or something... I mean c'mon... you can't expect me to NOT talk about something that is life changing to me, right when I get diagnosed... or when I'm going through a flare. It just amazes me on how disrespectful people are these days.

I mean, people are "amazed" that my kids say, yes ma'am and no sir... all that stuff. It's like yea, it's called manners... is that not what people are teaching their kids these days? Are my kids angels, of course not... but they will have manners. I will not allow them to disrespect others the way I have been disrespected in my life, it's just un-called for.

Well hopefully I hear something from the neuro tomorrow... cause I can't wait any longer. It's like waiting for the sequel of a movie to come out... ! UGHHH I think my brain is just DONE for the day, like it can't handle anything else... or else it will be "overloaded". So I'm going to call it a night, I have a busy weekend this weekend, but if I hear anything from the neuro, I'll update!


The Climb by Miley Cyrus
Even though I don't like Miley Cyrus, I like this song a lot... it explains a lot about MS, if you think about it.