Wednesday, November 30, 2011

I got an appointment!

Texas Dirt Road = Relaxation
YAYYY! I got an appointment w/ the urologist on December 20th! I was so excited I almost peed my pants << urinary joke! lol That was like... the only good thing that came out of today! I asked about my MRI results, they said they weren't in yet... which annoyed me because I'm a very IMPATIENT person, if I haven't already said that.

Then, my youngest son decided to feed the fish while I was in the restroom, except he dumped the whole fish food container in there, so I had to clean the fish bowl out. Once Jason got home from school, I took them to get some late lunch, cause I was in NO mood to cook them anything. I get home & let them eat and play outside and what do they do??? GO MUDDING! UGHHH! I usually don't care, but in their NEW shoes! I was soo upset!

Jason decided to run from me when he knew he was in trouble, so like the stubborn person I am, I chased after him & now I'm paying for it. Especially because my dogs got in the way of my chasing after him and my faced met the ground. Needless to say, it's 6:30pm and they are bathed and in bed.

You know those days where anything and everything pisses you off, yeah that's my day! So I'm glad it's almost over because it's going to be an early night for me tonight. I got some studying done... thank goodness. I don't know how much of it I'm going to remember but hey at least I studied.

You know, I e-mailed one of my teachers because I had a question about when she was going to review our exam & she got kinda snippy w/ me. She said something along the lines of, "The final exam is over the material from the whole semester, so as long as you were paying attention, you should do well... even with out the reviews of the exams." I wanted to reply, uhm excuse me... have you heard of memory problems before!!!! UGH that upset me but like I said, it's one of THOSE days.

Here in a little bit, I'm going to take a shower... snuggle up in bed & watch some TV and relax... and not worry about school work or anything else because I'm just drained. I need another one of those damn valiums to make ALL the pain go away, and to where I can just sleep.

I guess here lately, I just need to come w/ a WARNING sign on my fore head to not piss me off lol. That would make things so much easier! It's a shame that common sense, isn't so common anymore. Oh thank goodness my mother is coming up tomorrow afternoon. My cousin is graduating from college this weekend, so she is heading up here for that and I'm like UGHHH hurry up! I don't want it to sound like I don't want to be around my kids... but I just need a break, ya know? I'm with them ALL the time & it's draining... especially on top of everything else I do.

Well hopefully I can have a better day tomorrow and get some results from my neuro. I will update everyone tomorrow, Have a good one. Oh by the way, I'm gonna attach a link to a song, that I've just been jamming to lately.

Waiting for the End by Linkin Park

Tuesday, November 29, 2011

Had my MRI

Well, I went for my MRI this morning. Thank goodness they sedated me for it... because I'm really bad w/ my spasticity while laying still. Once I got out of there & I "sobered" up a little bit, I called the neuros office. They gave me the number to a urologist they are referring me to, so that I can make an appointment. I will do that tomorrow morning.

They also said that they will call me in a few days with my MRI results. I hate the waiting game, it's like getting a diagnosis all over again. I'm just feel that there is something going on... and I want to know NOW. Needless to say, I'm not the most patient person there is out there.

You know that feeling where YOU know something is going on with your body, that isn't known yet. It's like you want the truth, even if it hurts. That's how I feel right about now. My diagnosing neurologist had in my records that he was "significantly concerned of Primary Progressive MS", which I don't feel is true, but I just dont "feel" like I'm RRMS. In all honesty, evaluating myself from the beginning of all this, I haven't had any relapses in over year, but my symptoms have progressively gotten worse. So I'm thinking Secondary Progressive MS... Which, in all reality, I've read that 50% of those diagnosed with Repeating Remitting go to Secondary Progressive MS after like a 10 year time frame... But there is no telling on how long I've actually had MS.

I can say that valium is amazing & it made ALL my pain go away... but hey, can't take that on a daily basis, lol. I came home and was going to nap but I got busy doing other things. So I think it's going to be an early night tonight. Gotta take ALL my meds before though. I am seriously, a walking pharmacy. I take: Avonex (slow progression of MS), Abilify (Anxiety/Stress), Baclofen (Spasticity), Clonozepam (Severe Spasticity, as needed), Cymbalta (Depression/Anxiety/Stress/Nerve Pain), Naproxen (as needed for pain), and Nuvigil (Fatigue & Cognitive Issues)... Oh I am on a med too for acne, but that is not related to all this MS crap.

I really hope I get in to the clinical trial for the med that is like Baclofen, but with less side effects. It would be amazing to be on a med that helps my spasticity, but with less side effects (drowsiness). I also need to contact my lawyer about my MRI... & hopefully I can get into the urologist really fast. It's pretty annoying to have urinary issues and being 24 years old. But I have to think of all of this MS stuff as, God wouldn't deal me this card, unless he knew I was strong enough to overcome it. It's just really hard to deal with something that is invisible to most.

Well, I'm exhausted... I'll update tomorrow once I speak w/ the urologist and everything. Hopefully my neuro will get me my MRI results quick fast & in a hurry!


Monday, November 28, 2011

MRI tomorrow!

Well, tomorrow is the day, that I get my MRI of the brain! I really hate getting MRI's but then again, I'm excited because it means I'm closer to getting results as to WHAT THE HELL is going on w/ me. I still need to call the neuro about a referral to the urologist, I meant to today... but I got so busy w/ school work. I'm honestly, just ready for school to be over and done with. I have no 'pleasure' or excitement about doing school work anymore.

So I'm sitting here wondering... okay, what if the MRI doesn't show anything... then what? Does it mean I'm just a more progressive case? Cause from what I've heard and seen.... my RRMS is more progressive than most. I'm glad they aren't doing a MRI of EVERYTHING all at once, again.. cause that was pure torture. I'm hoping James can go w/ me... but it depends on getting our son to school. Even though he can't be in the room w/ me, it's nice to have someone there waiting for me when I'm done. 

I'm still not sure if they are doing an MRI w/ contrast... or what... I like it when they do because it shows lesions better than a regular MRI, but then again that contrast makes me sick to my stomach. Well at least I got a lot of my school work out of the way today, so I don't have to worry about doing it when I get home, because I will probably just want to sleep. Even though I'm laying there in that annoying tube... it is exhausting. I have to stay awake during it, to make sure my tremors don't take over.  

One of the things I have noticed lately, is my memory is soooo long gone! I can't remember anything & it's soo annoying! I'm trying to keep my stress level under control because that seems to make everything worse... but saying I'm going to do something & actually doing it are two different things. 

I'm glad that the weather has finally cooled off in Texas thought and it looks like it's going to level out for a little bit, thank goodness. We finally got some rain too.... we need a lot more, but hey at least it's something. I need to plan on a trip soon to take the boys on the hay ride and pick out and cut down our Christmas tree, even if we can do that this year. They said since the drought was so bad, a lot of the tree farms suffered. 

It was just my luck for Texas to have the worst summer ever, on my first summer with my MS diagnosis. I will never complain about too much rain or too much cold weather EVER again. Well it's about time for me to go fill my medicine box, so I don't FORGET to take my meds! 


Saturday, November 26, 2011

Where it all started...

I began this blog to vent out my frustrations of life... especially living with MS. I never thought to start off as to, hey... this is how I got here... So, here we go.

At the beginning of 2010, I noticed that the right side of my face was tingling here and there... started off on my lip. Well, my whole life i've been a walking accident so I thought that it was my body being weird to me because of the hell i've put it through. It went away.. came back... went away, and so on and so on.

Well when James was in his Fire Academy for a week in July of 2010, I went to San Antonio to stay w/ my mom (it was her 50th bday) <<Sorry for outing you mom. Well anyways, I still had some numbness/tingling on the right side of my face... I had just kinda dealt with it. I had gone to my PCP about it & they put me on meds for anxiety/stress and scheduled an MRI for when I got back from being out of town.

Anyways, so , I'm in town for her bday and we had her party, it was a blast... mom drank a LITTLE bit too much... but hey what can ya do! So, I'm sitting at my computer doing some homework... then my vision went blurred and my left arm went numb... freaked me out. My mom stayed at home w/ the kids and I went to the hospital. They tested me for stroke... monitored me and did a CT Scan.

The CT scan came back normal, go figure right, & they told me I was STRESSED...and that the monitor showed I was hyperventilating at times... well no shit sherlock. So they told me to follow up w/ my PCP. So when I got home, I followed up w/ my PCP... I had to see the nurse practitioner cause my DR was booked. So, I see the N.P and she was a snooty biatch, just saying. She tells me I'm STRESSED, once again that's what they are telling me my symptoms are caused by. So she said since my CT scans are fine, she CANCELLED my MRI.

That next month (August 2010) I graduated w/ my Associates Degree in Criminal Justice Corrections on the 15th... I then realized the WHOLE side of my face is numb and tingling... and had a burning sensation to it. So, here I go to my PCP... She treats me for "bells palsy" and gives me steroids w/ a referral to a neuro. Guess what, I get better w/ the steroids! lol

I have my evaluation w/ my neuro on like the 25th or something of August... He orders an MRI to "check on things". I go in for my MRI on Saturday, August 28th.... The contrast made me sick to my stomach.... but I made it through it. That night, I went to bed and I was watching TV and I had this like after effect of light in my eye. You know when you take a picture and the flash like stays in your eye for a minute, yeah that. So I turn off the TV and go to bed.

The next morning, I'm a walking sober drunk person. I couldn't balance a paper plate w/ my left hand... I was running in to walls and all that. Now, me and the walls are strangers -- but this was a little bit too much of running in to each other. So, I had some double vision going on... couldn't text worth a crap & I just gave up on that whole thing lol. The next day I called the neuro, no response... I call like 3 times and nothing. So James and the kids and I go to the hospital, they drop me off up front for me to go to ER. I was like okay, well my neuros office is right here let me go see if I can talk to him.

I go up to my neuros office, they "fit" me in to his schedule.... I go into his office and he tells me I have MS. I'm like okay, cool.. what's that how do we get rid of it... Then he explains it to me, and like a sissy baby I cry lol << I'm not a very emotional person, just to let you know. So, I call James and him and the kids come up there... James walks in sees I'm crying and says, "Well this can't be good." So after we go over everything again, we schedule a "follow-up" visit after I get IV steroids, mind you during all of this, I texted my mom and told her and I don't think I will EVER live that one down.

So, I get the IV roids and get the steroid taper and finally get to feeling better. Had my follow up & chose to get on Avonex. Started Avonex in September & finally got adjusted to taking the shot and learned how to "avoid" the side-effects. Well... my 23rd birthday is coming up, October 13, 2010, and I'm SUPER excited! And then I have a relapse! HAPPY BIRTHDAY!! Only this time, my right side of my face is completely paralyzed & I'm having issues swallowing and I can't walk w/ out assistance... all that stuff. Off to the neuro we go... ((long story I know, but we're almost done)).

So, I get another MRI and SURPRISE I HAVE HEADLIGHTS! I call them headlights because I got two new lesions on my brain stem & on the MRI they look like headlights. So, I get IV roids.... I'm actually getting them the day OF my birthday. James still went through w/ my bday party it was a lot of fun, especially since I was doped up on pain pills, I was the life of the party. lol

It's been over a year and I've had relapses but increased symptoms, that you've read about. By the way, MRI on Tuesday. It's been a roller coaster that's for sure... I found out who my real friends are.. which the ones I thought would stick around, didn't. Oh well, screw them... their loss right? Everyone always tells me that I've really taken this diagnosis and moved on w/ it... It's like, well yeah I can't just sit around and feel sorry for myself I have two kids to care for. So I came across MSWorld and it's been the best thing that has happened to me since my diagnosis. I've met friends here that can never be replaces, and I've found the true meaning of friends forever, through thick and thin.

So just remember, we're not alone... we all have a plan in life... and this is my plan. It's not what I thought it would be, but it's something I'm proud of. Nobody can make you truly happy, but yourself. You need to find peace within, no matter what your situation to triumph and conquer. MS has won this battle, but I will win the war, along w/ everyone else diagnosed with MS. There is a saying I saw and I'm sticking to it, "MS is only for STRONG fighters." Well if you know me, you know I'm a fighter and this is a fight i'm not backing down to.

Life is a blessing... the outcome of your own life, is the way you choose to live it.


Friday, November 25, 2011

Moody Day

Yeah, so the title says it all. I'm really moody today. I don't want to do anything or be around anyone... who knows what's going on with me. I've gotten a lot done today, but i've just been kinda "layin low" lately... and keepin to myself. I talk to a few people on a daily basis, but that's about it.

I wouldn't say I'm "antisocial", I just don't have the patience to put up w/ any drama BS, ya know? Like those ignorant people who always try to ONE UP you.... It's like I'll say, "I'm in so much pain today." ignorant person says, "you're telling me, I have pain here, here, here and to top it all off, I've had a bad day".... it's like SHUT UP!

It seems as if those people ask you how you are doing, just to open it up for them to "one up" or out do you in pain/drama BS... It just gets on my nerves. I don't care if they want to one up me ... it's the fact that they aren't being sincere when they ask, how i'm doing. Makes me wants to B-slap someone! lol

So... to speak of my pain today... who knew that a car drive could do SO much damage. I'm seriously, still in my pajamas. I didn't even want to get out of bed.... I've been lounging around the house all day & I just want to go back to bed soon.

Our new Great Dane is doing better... very skinny still, but I'll change that. He is very skiddish around men... poor thing. Something happened to make him that upset around men, but he follows me around like a baby. Here is a pic of him, he is adorable!
Isn't he just the cutest ever! Those are my boys in the background. Moose is their guardian! lol I'm an animal lover, if you didn't know.

Well it looks like we are having some friends over tonight.... that should be interesting. My butt is gonna be sitting inside relaxing... our friends know that I can't be standing outside the whole time socializing, so it's nice to have that understanding.

We are supposed to be having yet, another, weather change coming... maybe that's being a contributor to some of the pain i'm having. Who knows right?

I'm really glad my mom came up for the weekend, to help me out... but then again, I feel bad when she comes up here and does so much. I used to be the biggest clean freak ever & now it's like I have to have things clean.... but getting them clean is a different story. I called and got an estimate on how much it would be to have a cleaning crew come to my house, occasionally..... let's just say it's way too much! lol

My mom was talking about sending something in to "home makeover", to try and get them to make a house for me that is more accessible... Seeing as we are living in my father in law's house because my mother in law passed away.... I don't have a master bedroom. I have a VERY small bedroom... & it's not easy to move around in, especially when I have my walker.

I really need to look into getting a cane.. but I can't find a pink camo cane!  I gotta be crippled in style!

Okay, I'm gonna go lay down for a bit. Might blog later, if not... I will tomorrow! Thanks for all the support as I'm writing these blogs... I appreciate everyones words very much!


Thursday, November 24, 2011

Happy Thanksgiving

Well, it's been an eventful past two days, that's for sure. Yesterday I baked all morning for Thanksgiving & then I drove to San Antonio, to have Thanksgiving w/ my dad's side of the family Wednesday night, and today I had lunch w/ my mom's side of the family. I got home not too long ago.

Who knew that just siting & driving would drain me so much?! I have aches & pains all over and I'm like WTF! I'm glad to be back home though... very relaxed now! I've come to realize from this trip, why I don't travel all that much. It just drains me of energy & eating the turkey, didn't help at all.

I was happy to see all my family, I don't see them all that often. I got home to a warm welcome from the dogs, that's always the best! My mom followed me up here, to stay for the weekend. Somehow she knew in my voice from earlier this week, that I wasn't doing good. MOMS! lol

I'm nervous to get my MRI on Tuesday.... hopefully I have no new lesions... maybe my existing are just irritated at the moment. Who knows... Cause I do have two lesions on my brain stem & I know that can affect my swallowing, but urinary?!?! I don't know... stupid confusing MS!

Some of my family here and there asked me how I was doing.. I said the classic saying, "I'm fine" lol I mean, not to be rude... but if I had told most of them, they wouldn't of understood anyways. Ya know, I feel like it took forever to get answers that led to my diagnosis & then whenever something new happens, it feels like the waiting game all over again!!! Doesn't this cycle end? I'm guessing not!

Well, I've been looking more in to my degree plan & I'm going to try and change my major to Communications (Public Relations).... catchy, ay? lol My mom talked to my cousin, who has diabetes... who used the same lawyer I am... He said it took him over two years to get disability... and he didn't have to go to court, but the lawyer went to the judge! So, I'm thinking I need to call my lawyer, see what's up?!

OH! I printed out & filled out some papers for the MSAA to get a "snazzy" walker instead of the walker I have w/ tennis balls on it lol, this one has 4wheels... so all I need is my lawyer to verify my MS diagnosis & I'm gonna send that stuff in! I asked to get the "hand-rail" too... so I have an easier time getting out of bed... cause that's a pain in my ... ya.

HELLO! I'm 24 years old... shouldn't I have other things to worry about besides this stupid BS MS... just saying. I'm glad I have the support I do though, through all of this... I don't know what I'de do w/ out it. Well, I'm stuffed & it's about time to watch the UT vs. ATM game! So i'll catch up later, I hope everyone had a GREAT Thanksgiving! Take care!


Tuesday, November 22, 2011

Well hello weather change!

Yeah... So I didn't get much sleep lady night. I was woken up at like 3 am from the thunderstorm and it took me a little bit to go back to sleep. My MS is in full swing today! It so graciously greeted me this morning. I think it's a combination of the weather change, my shot, and overdoing yesterday.

Right now my ears are "hot"... I hadn't experienced this in a while and now it's back. I've also been having tremors really bad today... I think my body is yelling at me to take a chill pill. We got a new Great Dane today...his name is Moose! He is already a mama's boy! LOL My other male digs are being my "protector" today... It's hilarious.

I did forget to call my neuros office today to check up on the whole MRI issue... But I did pass my exam! That was a relief... Now I have a break from school for Thanksgiving. I'm pretty sure I'm going to apply to the University of Texas and change my major to something in communications or business. I've printed out the degree plans to look over and decide what exactly I want to do.

I think I'm just coming to the full realization that if I'm going to work its gonna have to be from home... If I have issues going to the store I don't even want to think about the issues I'll have having a job I have to BE at on a regular basis.

I'm gonna be traveling the next couple days so I'm not sure if I'm gonna be able to post much, but I'll try and update you on the crazy times with my crazy family.

I'm gonna make it an early night tonight in exhausted! Have a Happy Thanksgiving everyone!


Monday, November 21, 2011

Stick a fork in me, I'm done.

Okay, so let's start off by saying... I had a VERY busy day. I have an exam tomorrow that I've been studying for... both the boys didn't have school today, at least one of them has school tomorrow! I studied, did some stuff for MSWorld... cleaned, played, cleaned some more. Now I really need to do some final studying, but man am I beat!

I did call the neuro's office, who gave me the number to the radiology place. So... I called the radiology place & got my MRI scheduled for next Tuesday, of the brain. I am going to ring the neuro again tomorrow, because I was under the impression that I was getting a full MRI done, like spine, neck, brain... the whole sh-bang!

Anyways, I'll keep y'all updated on that. On another note, Wednesday I leave to go out of town for Thanksgiving, I'm going to San Antonio to see my family. I haven't seen them in a while, so I'm excited. James has to work Thanksgiving... that's no fun. So I'll leave Wednesday and have Thanksgiving w/ my dad's side of the family that night, then stay w/ my mom & Thursday I'll go to my grandma's (mom's side) for Thanksgiving lunch. THENNNN, I get to drive back home... depending on how I feel.

I totally forgot to take my shot last night, OOPS. So I'm taking it tonight... I probably over did today -- but once I start cleaning I can't stop. I called for some prices on a cleaning service for the house... they are pricing my house at $150-$200 PER CLEAN!, YA RIGHT!

It just gets hard to clean, w/ the fatigue & the pain... I can't even grip the vacuum sometimes, that's why my house goes un-cleaned sometimes. & I'm a clean freak... so it drives me insane & I try and clean anyways, but I can't then I get pissed off and ugh!

I've been really testy lately, snapping for no reason... I don't know if it's the stress or what but man oh man I should put a warning sign on my forehead when people approach me. I think it's the stress of not knowing whats going on with my MS as well. It's driving me bonkers! I can barely swallow sometimes and it's freaky & I get all freaked about going to sleep, ya know?

Oh which reminds me, when I call neuro about the whole MRI thing... I need to see if they are referring me to a urologist... and what the next steps are. I just want to get back on the path of moving forward again. I feel like in the fast year i've taken 5 steps forward and 10 steps back. I'm too young for this shit!!! lol My 23rd birthday, I had to get a steroid infusion & my nurse had a present waiting for me :) it was very nice!

You know what I'm really tired of... the weight gain w/ the medicines and inability to move! I used to be such an active person!!! Now i'm like ahhhhh STOP! I don't need any more extra'ness! I'm doing this whole "juicing" thing... and working out as much as I can... and I feel better, but still.. no weight loss. We will see though.
Alright that's it for now, I'll check back in tomorrow.


Sunday, November 20, 2011

Lazy Day!

Well today's weather was very "gloomy" so I just did, NOTHING. Well, I did things around the house & some homework... but I wasn't running around doing stuff. It was nice, except for the fact that I had to go to the grocery store... that always takes a lot out of me.

So, I've been reading everyones feedback and I did want to say this... By blogging, I'm getting my feelings off my chest because it's not good to dwell on things or hold things in. So this is my way of just letting it out and moving forward with my life.

I've realized that when I see family or friends, I don't want to talk about what my MS is doing to me or anything like that, I want them to ask me about how I'm moving forward with my life, how my volunteering is going. I take great pride in the things I do at MSWorld and It's nice for that to be acknowledged by them rather than wanting me to reflect on the things, I'd rather not try and explain.

It's not easy explaining how MS effects me... because it's "invisible" for the most part. "You look great!" Yeah... well... You look like an idiot lol Just saying, I don't want to sit here and talk about all my medical problems, I want to move forward and look at where I'm going & what I'm doing in the future. Is that so much to ask?

James knows better than to ask me how I'm "feeling" that day, he knows when something isn't right and addresses it then... I'm glad that he treat me like a fragile piece of glass, because I'm not. I'm still Ashley, just different. Even though I would never ask to have MS, I am dealing with it and moving forward and doing things with my life that I never knew were possible. Not to mention, the wonderful people I've met in the journey, so far.

Never in a million years would I ever think that I would make such wonderful friends that I like to call family, online. It's just crazy on how quick life can change, ya know? Tomorrow I'm going to "hound" the Neuro's office... see what's going on w/ this whole MRI thing. I know they are probably waiting till after Thanksgiving... but I'm not a very patient person.

I've realized what I do in order to make myself feel better and that's make others laugh. I also love that I help people as well. When I was first diagnosed I was told, OH YOUR SO YOUNG! Well truth is, I'm not the youngest & that's the sad part. There are kids out there with MS that don't know any different.

It seems as if people need to "think before they speak" sometimes. I don't remember if I told y'all, but I ordered a shirt off the internet and it says, "My Chronic Illness is more real than your medical expertise!" I thought maybe if I wore it out to events, maybe people would "think before they spoke". It's a shame common sense isn't so common these days...

Jason, my oldest son, is off school ALL week for Thanksgiving, since when do they get a whole week off??? Oh well, he helps me out... most of the time. My boys are so cute... whenever I'm not doing so good, they know without me even saying anything and they just cuddle up w/ me and play w/ my hair or ask me if I need anything! Jason even LIKES vacuuming, sometimes!

Well, it's geting late and I'm exhausted... I really wish this stupid Texas bi-polar weather would make up it's mind... it's tiring! I feel like a meteorologist, cause I can tell when the weather is going to change because of my MS and arthritis, before it even actually changes... Career change?? I THINK NOT!

That's it for me! Take care everyone & remember... you are responsible for your future, make it the best it can be.


Saturday, November 19, 2011

Got out of the house

Well today I ran some errands BY MYSELF. It was nice to have some "alone" time and be out of the house besides being at a DR appointment. Once I was done w/ that I came home & took care of the chickens & dogs. Then the hubby and I went out to the deer lease to check the game camera... got some deer coming in finally.

I might have to start looking for a job, instead of waiting around on Social Security... we really need to get our own house cause living with and taking care of all my father-in-law's stuff, is not the best thing for me or my family. It's draining... to be honest. Ever since my mother-in-law abruptly died, i've been taking care of the house and his financials... and I just can't do it anymore.

Now James, my husband, is taking me out tonight. He knows I just need a break from mommysville. lol I've just had a lot of stress going on lately with school and the holidays, it's wearing me out. I want to just have a social security and volunteer and be done w/ it all. But if I get denied one more time, I'm going to just see if I can get a job working from home. That way I don't have to be at a work place if I'm not feeling well. I can work in my pajamas.

I'm going to call my neuro's office on Monday, see if they are going to schedule my MRI soon or what, also, to see if I'm going to be referred to a urologist. That drive to the deer lease was rough, to say the least.
My cousin came over yesterday, I cut his hair & he got his jacket that I've had at my house forever then we went out to eat at Pluckers. It was fun, I'm just glad James is home from work finally. He had to work a 48 hr. shift.

I've been in a "pissy" mood lately, don't know why... I guess it's because of all my symptoms & everyday life and school and AHHHHHHH! But I am really glad that my blogging has helped others with MS... it means a lot to know that just my words can help others. I'm pretty much not holding anything back in this blogging thing. Well, that's all for now, take care and be well everyone!

"I might seem as strong as a rock but I do have some cracks of weakness."  -- Ashley Ringstaff

Friday, November 18, 2011

It's a BLAH day

So, I really need to clean my house today, but sitting around and watching Lion King w/ Luke sounds so much better. Brings me back to my childhood days. I passed both of my quizzes this week, so that was a relief. Now I just need to get some things done, to be ahead in school so that I don't get so overwhelmed with school work all the time.

I can tell you that I am tired of people coming at me w/ a negative attitude. It's a sad thing that common sense isn't so common these days. I did do some cleaning yesterday... to keep my mind occupied. I kept getting on Facebook and seeing everyone's status updates about seeing Breaking Dawn & it just pissed me off.

I'm glad that everyone is enjoying reading my blog, it means a lot that by reading my blog it's helping them cope with MS. So, I'm not like severely depressed right now, this is just my way of letting it all out. It's better than keeping it all bottled up inside, cause for those of you who know me, it's not a good thing for me to explode on someone.

I'm just glad that I have MSWorld to help me through all of this. It keeps me busy and let's me feel involved and like I'm doing my part. It's also fun, I have fun with what I'm doing, minus the bullshit that comes along with it. I've met some great people there though. It's like Montel said, "You don't get it, till you get it."

So, I started this whole juicing thing... and I really enjoy it, I don't get exhausted as quick. I'm not saying my symptoms are gone, but they aren't as intense, because I have more energy. "I'm gonna be a mighty king, so enemies beware!" lol

I'm going to call neuro soon to schedule MRI & I also need to figure out what I can do about this whole clinical trial for spasticity. I'd like to have a medicine that didn't cause more fatigue. Sometimes I wish that everyone came to my house for the holidays, instead of all of this traveling, but then I think.... well I don't have to clean up for it in the long run lol

Alight, I'm out for now, I gotta get SOME cleaning done. Take Care!

Thursday, November 17, 2011

Missing Out

Okay, so for those of you who don't know me on a personal note, I'm a HUGE Twilight Fan! The premiere of Breaking Dawn Part 1 is tonight, and I bought tickets... but I'm not going... :( For one, my tooth is killing me, for two... I've had a migraine all day and for three, my urinary frequency issue wouldn't make it much fun.

Okay, now that I've let that out... I went to the Dentist today and they told me EVERYTHING I have wrong w/ my teeth, so thats going to be an adventure. I'm still waiting to hear back from neuro about when my MRI is. I told them that if they are going to give me a FULL MRI, cause I'm not going through that again.

I'm hoping that this Texas weather is finally leveling out. This up and down weather has been killing me. I got a letter in the mail from my lawyer saying they are appealing my denial, so now I'm going to have to go to court. So I have to prepare for that, I called the National MS Society and they are going to send my lawyer some info about MS, so that my lawyer can understand it better.

Oh by the way, sorry I haven't posted in a while. I was in the ER Tuesday Night... ? Because of a toothache, they gave me some meds to help w/ the pain, thank goodness. I then had dinner with a friend after that, who's doctor is testing her for MS... because she is dealing with numbness, fatigue, cog-fog and issues in her left eye. I'm very scared for her because I wouldn't wish this upon anyone, ever but I want her to get some answers and fast. So, I gave her some basic info about MS & wrote down some things for her to ask her doctor about.

I'm just happy that I have the people in my life that I do. I wouldn't be making it through this MS thing, without those who can actually relate. My family are great supporters, but they can only understand so much, ya know. Well I'm gonna go now, y'all take care and be well!

Monday, November 14, 2011

The Results Are In....

Well, I spoke w/ my neuros office earlier today... Everything came back "normal", so the next step is to get a MRI done of EVERYTHING, I told them I needed to be knocked out for it. I am also wondering, if and when, I will be referred to a urologist. I'm kinda disappointed my results came back "normal", because I'd rather have an infection or something, than play the wait'n'wonder game, like I am now.

I got a letter in the mail from my Lawyer, they are appealing the decision of my denial for SSI, and we're going to court... sometime. I really need to contact the MSAA about getting one of those nicer walkers, because the one I have is not easy to move around with. I was going to look at a cane too... Just something for some support, so I can stop using the wall.

There is a weather change coming in, I can feel it. I told James (my husband) earlier, that I want to move out of Texas & he was like alright let's go! It got me so excited that I could actually get away from this miserable, bi-polar, weather. It's almost Thanksgiving, and I was sweating outside. Something is not right with that picture.

Well my fatigue is getting the best of me, time for some shut eye. Be well, Be happy, Be yourself!


Sunday, November 13, 2011

Is it Monday yet?

So... I'm ready for it to be Monday so I can get the results from my neuro about my lab work for the urinary issues I've been having. Wanna talk about embarrassing? I was out with my friends and I had to cough and .... Ya, needless to say I had to go back to the hotel to shower.

I'm seeing a lot of people at this softball tournament that I haven't seen in a while and when they "learn" I have MS, they get that stupid sympathetic look on their face and say "I'm sorry" ya I get that a lot... But instead of people saying I'm sorry, hearing what can I / we do to help out like that would mean so much more to me.

I don't want sympathy or pity I want support... Find out how you can help the cause, ya know? It's like they want me to explain what I'm feeling like living with MS and it isn't understood that I CAN'T explain it....

Okay that's my vent for now... I'll keep y'all updated with everything and what my neuros office says. If everything comes back normal... I'm getting referred to a urologist and have to get a full MRI. I had one in March of this year and there was nothing on my spine... But who knows. I told them that I want to be knocked out for a full MRI. Last time I had one they had to stop in the middle of it and wake me up cause I was jerking in my sleep.

Updates soon!!! Take care and remember it's better to let it out than hold it all in and let it eat at you.

Friday, November 11, 2011

Neuro appt today

Well I went to see my neuros nurse this morning. They are waiting on lab results to make sure I don have an infection. If I don't have an infection then in being referred to a urologist and getting a full MRI to check for active lesions.

I expressed to her the stress I've been under from school and my MS an my THIRD denial from social security. Good thing is she gave me a card to call someone with the national MS society to help with social security.

I hate the waiting game... We also had a talk about school and how my cognitive issues impacted my school work. My GPA is really going to suffer after this semester. I registered for next semester but then I think I'm going to take a break from school before my GPA gets REALLY bad.

We talked about the swallowing problems I've been experiencing and since I have two lesions on my brain stem it not uncommon for the swallowing to be affected. The only time I've had swallowing issues prior to this, is when I was in a flare last year and half of my face was paralyzed.

I'm headed out of town right now for a softball tournament that my husband is playing in. Too bad I can't relax the whole time I'm there... But I have school work that needs to be done.

It doesn't matter how hard I study.... My memory has gone to shit. It's a pod excuse when I don't pay attention to when James, my husband, says something.

Alright I'm out for now!! Lata!!!!

Wednesday, November 9, 2011

On to the odd stuff

Okay, so yesterday... I had to drive 3 & 1/2 hours to a school orientation and then drive 3 & 1/2 hours back... alone. It was nice to have some alone time, but the whole driving thing wasn't the best. I had to stop at least 4 times there and 4 times back I think, to go to the restroom... which is un-usual for me. I guess I might be experiencing some sort of Urinary Incontinence, because today... I was on the couch, and then I had to "run" (hurry) to the restroom to even make it there in time, so this is something new for me that I need to talk to my neuro about.

Also, dry mouth? Is that something w/ MS? Cause out of no where I'm having dry mouth, where it seems like something is stuck in my throat... Oh and the hot flashes have returned... it varies day by day on which are it affects. It used to be, my face... at this moment, it's the right side of my body. Yesterday it was my left. So I'm really frustrated and wondering why my symptoms can't seem to get under control. But remember, I'm still not "disabled".

I'm ready for school to be over... and I know I need to finish up the "2011-2012" school year, but it's like ... what's the point almost... I'm coming to the realization that I'm not gonna be able to be a probation officer, because my MS is just stopping me from even functioning at home... how is it going to allow me to work? I'm looking in to something that I could do ... like work from home. That way I can be on my own kinda time thing... That's the only reason I can go to school these days.

I'm looking forward to the holidays coming up but not the stress from it. Since I've been typing, I said my right side was "hot" ... now my right hand is going numb, so I think I'm gonna give it a break and check back in later. Don't mean to be a pitty party all the time, that's now what I want. It's just nice to know that others living with MS know how I feel & that I'm not alone in these feelings.

Monday, November 7, 2011

Just a crap-on-me-day

So, not only am I "running" on 2 hours of sleep, because my youngest son decided to wake up at midnight.... and not go to sleep till 3:30, but I couldn't concentrate at all today. Got lost driving around, then figured out that I was too weak to drive and hurried back home.

I'm still trying to write up a letter to Social Security about my THIRD denial... we will see how that one goes over. I think I have to see a judge this time, if I appeal it. ((Note that I'm typing w/ one hand right now)). I think the "gloomy" weather impacted my day as well, it's like it set the mood to be like just "blah" all day.

I'm glad that I started blogging though, instead of holding it all in. It's like, I can't really tell the people, physically around me, how I really am feeling at that time, cause they just can't really grasp it. Even those that actually try to understand, never will understand.

I was thinking about seeing a spasticity specialist, since my spasticity is getting so bad... but who knows... I don't want ANOTHER medication.. I just want the pain to go away. I mean I can handle the spasticity in my back at time, but in my hands... c'mon now!

Tomorrow I have to drive, by myself, 3 1/2 hours away to a school orientation, be there for an hour, and then come back. Probably going to be an early night, tonight, so I can actually function. I really need to check in to the Dragon Dictation for my computer, cause I keep putting it off thinking my hands will get better, when they are just getting worse.

Okay, that's my vent for the evening. Be well everyone. I'm usually not this, taken by my MS, it's just all hitting me at once.

Sunday, November 6, 2011

MS Sucks

Can someone please explain to me how I get denied for Social Security 3 times, but yet going to the grocery store for 30 minutes yesterday has now made my whole left side weak and "buzzing".
I'm 24 years old, and I should be in my prime right now, but instead it's like i'm battling things that I never expected I would be. I feel like my life has been cheated... it's been stripped from me, well what I had planned for my life that is. But MS hasn't just stolen from me... it's stolen from my family.

I couldn't even go on my son's field trip w/ him on Friday, because it was at a park searching for things... and lord knows I would not have been able to do that. But remember, i'm not considered disabled, according to the Social Security Administration. If it weren't for the open book tests in school, i'd be failing all my classes because my memory has gone to shit. I tried to do some simple work outs the other day and collapsed. My house is a disaster.... and I can't clean it. I used to be a clean freak... my house was spotless.. not I just can't do it.

It's pretty bad when I have to get my five year old his own alarm clock, because I can't wake up in the mornings that James is at work, to get him off to the school bus. He is responsible for getting himself up and me..... A FIVE YEAR OLD SHOULDN'T HAVE TO DO THAT.

If it wasn't for my iPad, I wouldn't be able to communicate on the computer like I do... I have "Dragon Dictation" on my iPad, so I can talk and it types for me... I'm glad it has a "blogger" app as well. Basically, "I'm sick and tired of being sick and tired." I can't tell you the last time I went to a family function... not only because it drains me.. but because I hate the "looks" and the speaking to me like I'm a child... "How are you feeling Ashley" ... like c'mon, I might have MS, but I'm not glass... I'm not going to shatter to pieces.

MS isn't the "flu" ... it's not going to go away... I don't think that people realize that the damage that has been done to me from my MS, isn't reparable... it's not going to "get better" it's like a set of stairs going down. If you look at the stairs... I'm at the top being no damage... I have a flair, thats the slope down, then the "step" (flat line) is my remission. You can't go up the down, pretty much. Things might get better, but they will never go back to "normal", whatever normal might be.

I haven't had a flare in over a year, but my symptoms are getting progressively worse. I tend to "feel" and think that I'm not RRMS that I'm SPMS... but it's too soon to tell, I suppose. I guess it appears to others that MS doesn't effect me much, when really it does, I just don't show it. I don't talk about it, till now. I cant grip a pen a lot of the time, I can't remember... ANYTHING... I'm pretty much screwed. Everyone keeps telling me, "I'm too young for this" ... well DUH, big DUH!

The only thing positive that has come from my MS, is the people I have met through MSWorld. I can't explain the feelings I have for my "wide-spread family. I might seem like a 24 year old to a lot of people... but I don't feel 24 in anyway. The sucky thing is, I have all these wonderful people who understand what I'm going through, but yet I've never met them face to face. Because we are all so separated w/ the distance.

That's my vent for now, I'm just tired of people thinking... there is something to help me feel better naturally... or there is a cure out there... or anything. It's my life, it's my health, I'll do what I want with it... don't pressure me to make choices about my life and my health, when you have no idea of what I'm feeling due to my MS.

Thursday, November 3, 2011

Living with MS

So, I've been fighting to get Social Security for over a year now. I just got my THIRD denial letter... three... really?
They aren't taking any of my actual "problems" in to account. Spasticity.... it's not just like a back spasm here and there, it's different, a pain I could never full describe to someone who hasn't experienced it for themselves.
I wouldn't be "sitting" around trying to get Social Security, if I didn't feel that I needed it/deserved it. If I can't write/type a paper for school, without assistance that's saying something.

One thing is, a lot of my "typing" comes from me speaking in to my iPad w/ the Dragon app, and the copy pasting it in to an e-mail, sending it to myself... and then pasting it in to word and submitting it...  Is that saying something?

It takes me an HOUR to actually get moving around w/ out not wanting to just curl up in a ball and go back to sleep. It's pretty ridiculous that the people that decide if i'm eligible to work or not... are eligible to work. I had a job interview last year, but the day before my interview, I had a really bad flare up and was diagnosed.

It makes me sick to my stomach to know that there are so many people out there that need assistance, but then there are people out there that abuse the system. For Christ sakes... I can't even clean my house anymore... well like I used to.

Anything and everything I used to do, has now been ... modified, so that it can be done... It's just draining, to have to "fight" to PROVE that I actually cannot do the things that they think I can.