Me and my MS

Looking Back...

2012-03-07T10:48:00.001-06:00

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

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

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

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

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

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

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

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

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

xoxoxo
Ashley

Really Fatigued...

2012-02-29T13:12:00.001-06:00

Okay, so this past weekend we had my son's 3rd birthday party... it was a BLAST! but... preparing for the party and actually having the party was exhausting. I haven't been doing ANYTHING since Sunday because I'm just exhausted. My brain can't comprehend anything that is told to me... and I'm just in a shitty mood to be honest.

On a good note, my son's cast is off, so he is now in a walking boot and is going back to his mother's day out on Tuesday's and Thursday's so I get my weekly breaks and time to myself. I love my kids to death, but sometimes a person just needs some time to their selves.

I can't believe it's almost March... Which means, MS Awareness Month! Anyone got any plans? I plan on continuing to bring awareness to everyone about MS. I'm glad that we have a National MS Month... but every month is MS Awareness Month to me.

It looks like I'm going to either the AAN meeting or the CMSC meeting.. still unsure yet. The two meeting are really big meetings about MS, AAN is in April and CMSC is in May/June. I really enjoyed reporting at ECTRIMS last year... and can't wait to see what this year's meetings bring.

I've been doing a lot of research lately on a "detox". I think I've finally decided that I'm doing the "Lemonade Diet" aka Master Cleanse.

I have heard really good things about it and how it gets rid of all of the toxins in your body. Once I'm done with the 10 day cleanse, I think I'm going to go on the HCG Diet... See how that goes. I will let everyone know if I actually follow through, I don't think it's going to be easy to just have lemonade for 10 days... but I'm going to try really really hard.

Sorry I haven't posted in a while. I've just been in "hiding" because of my fatigue and haven't been motivated to do ANYTHING. I'm just really ready to be on the right track in life and get to a point where I can be "fine" and mean it. I should catch a break from my MS sometime, right?

Update on Tysabri... I've been doing really well with it actually. I haven't had any side effects really and the last infusion I rested the rest of the day, but I didn't pass out like I did with the first infusion. I now refer to my Tysabri infusion as my "vacation". Because I'm at the doctor getting medication but I get to sit in a recliner and get on the computer or nap or do WHATEVER I want and not have to get up and do anything for anyone or do something around the house.

The nurses told me I could stay longer if I wanted, so that I could have a "longer vacation" but I was hungry so I went to get food. I'm really glad that the nurses at the infusion clinic are so nice. You don't really find it common to go to a DR's office and everyone greats you by your first name and is very cheerful and actually knows your background. I'm glad that I found that at my neurologists office.

Well, I'm going to go take a nap now... this weather change is really messing with me... it's supposed to be in the 80's this week then go back down to low 60's... I'm ready to MOVE! lol Like that will ever happen.

xoxo
Ashley

Symptom Awareness???

2012-02-23T07:30:00.003-06:00

Okay, so it's almost March... and as many of you know March is MS Awareness Month! It's a time for us to make Multiple Sclerosis known throughout every city... every state. Teach people about MS and hope for a cure... hoping that the more people know about it... the better chance we have to getting support to find a cure for this illness! So, I was sitting here thinking about the awareness of Multiple Sclerosis... and I just had some thoughts I wanted to share.

While MS is the cause of the troubles I deal with on a daily basis... I feel that the definition of MS itself, doesn't let people know the actual truth of what living with MS is like. So I thought to myself... should be called Symptom Awareness... because while in the back of our minds we hope that we don't have another flare and we hope that the medication we are on is doing its job... a "flare" is not what MS is in everyday life! It's the symptoms of MS that is everyday life. We don't deal with being in a flare 24/7 - 365 days a year. It's the symptoms we deal with... and while having a flare is what causes the symptoms... we don't have to be in a flare to deal with MS.

The whole remission thing... while we are in remission, some people think that okay... they are in remission so their MS isn't active right now, so they're good. NO, that's wrong. Just because there is no active lesions going on... there is still the damage from the flares we've had in the past that cannot be repaired.

Some people think, "Oh well you are on medication for your symptoms, so yeah, you're good." WRONG. Taking medication for your symptoms... is like writing something down in pen and then using white-out to hide the mistake. White-out masks the ink, just like medications mask the symptoms... it's still there, just not as "bold".

There are some factors that need to be taken in to consideration when thinking about this... Okay, so with any medication there is a limit on how much you can take. Now, with any medication... after some time your body grows familiar with the medication to where the effect of the medication isn't as strong as it first was... so the medicine doesn't "work" like it once did because your body is used to it. Now, you think okay well I need to up my dosage... well what if you can't? What if you're at the max dosage of that certain medication, then what?

Then when some people see you... they're like "Oh you look like you're doing much better." Okay, let's put some thought in to this on why you "look" like you're doing much better. Has their been a weather change lately, Is it mid-day when all of your medication is in your system and you aren't exhausted from the day yet? Are you on steroids? Are you acting like you're a lot better... just to avoid all the comments of concern? Are your symptoms less than the day before? There are so many factors that contribute to what our day is like day in and day out that I can't even write them all down.

So, in short, what I'm trying to say is yes I want MS Awareness... I want the whole world to know what it is, so I don't have to explain it when someone asks... but I want more attention drawn to the symptoms that accompany MS. Not only in just the awareness of individuals... but in research as well. Yes I want a cure already... I don't want to live this way anymore... but I also want some kind of relief while I'm waiting on a cure. I don't want every day tasks to be a burden and drain me and make me hurt.

xoxo
Ashley
Stronger (What Doesn't Kill You) by Kelly Clarkson

Emotional Rollercoaster

2012-02-22T12:57:00.001-06:00

So I feel like I'm literally on an emotional rollercoaster... some days I'm fine.. some says I'm really hyper/happy.... and then some days I just don't even want to get out of bed... I honestly don't know what to expect from myself these days. It's weird... and I don't know how much longer I'm going to go through it. Can lesions do this? It seems sometimes like I'm bipolar or something, like you don't know how I'm going to react to a situation.

I've been keeping quiet lately and just laying around because I keep getting this horrible migraine that I can't get rid of and moving my head around and light irritate it. My oldest song got upset with me last week which upset me but I didn't show him. He was upset that I can't be like the other moms and come to his class to help out all the time and be at his class parties. I for one told him that Luke (his little brother) has been out of school because of his broken leg and that I haven't been feeling well. He told me, "Well mom when are you gonna get better... you are always not feeling good." It's like, how do I answer that? I was speechless and just changed the subject so I didn't have to answer it.

On a good note, Luke got his cast off yesterday and is now in a walking boot and can go back to daycare, which I think I'm more excited than he is. Don't get me wrong, I love my kids... but I need a break every now and then. I think it keeps me sane to be alone every now and then. I don't like to be around people all the time.

I still haven't decided if I'm going back to school anytime soon. I'm still looking at my options on what I can do in school, because I don't want to waste my time & money going and failing because of my cognitive dysfunction. I've never been a quitter and I feel like I've been defeated when it comes to school. I know that I stopped going for a good reason... but sometimes I just get that feeling as to, how much do I have to change/give up because of MS?

I've been sitting here looking at my house knowing that I need to clean it... but I know that I'm going to have super clean before Sunday for Luke's Birthday Party, so I'm just going to "pick up" until then. We're making cupcakes today for Luke to take to school tomorrow. They love baking w/ me and I love it. Now if I could get them to LOVE cleaning as well.

I've been looking around online for designs for a MS tattoo... I really want one, but I'm very picky... and tattoos are permanent. So I think it's just going to take time & thought before I come to the conclusion.

Well, my migraine is back, so it's time to lay down.
xoxoxo
Ashley

I made an OOPS!

2012-02-19T11:13:00.001-06:00

So, I've been messing around with my diet and I'm thinking that I need to call my PCP about being tested for gluten intolerance..? I'm also cutting out sodas from my diet... I'm trying anything I can to lose weight because I do not like having this extra weight on me.

Thursday, I went in for my second Tysabri infusion. It went well... I came home and just laid in bed all day and slept most of the next day. But I haven't been having any other side effects besides being tired, which is good. Today is my youngest son's birthday... he is three! I can't believe he is 3, where does the time go? We aren't having his actual party till next weekend, cause he gets the cast off of his leg this week.

So I did a big OOPS this past week. I got all my meds together and I put them in my pill box... So I'm taking my pills and then all of a sudden, I start getting dizzy and just weird feeling... I thought it was because I cut out soda from my diet... but that wasn't the case... I guess when I was putting my pills in my pill box, I didn't put in my Cymbalta... So this whole time my body was going through withdraws from Cymbalta and I'm going crazy trying to figure out what was causing me to feel like complete crap.

So, now that I'm back on Cymbalta, all is right in the world... well kinda. I went to the urologist last Wednesday... did this totally uncomfortable test and they gave me a script for Vesicare... So far so good.. I haven't had to change clothes, so I'll swallow another pill to avoid the extra laundry and embarrassment.

I actually had enough time to myself yesterday (thanks to my mom) that I went and got a much needed hair cut. They charge me extra cause my hair is so long, but oh well... I don't like having short hair and if I ever did have short hair, my dad and husband would KILL me because they like long hair.

James and my father-in-law went out of town this weekend to look at a deer lease and set up feeders... so it was just me and the boys and my mom. Thank the Lord she was here, because I've been sleeping most of the weekend. I actually got invited to go out last night, but I didn't because I wasn't going to leave my mom here w/ the kids by herself... plus I haven't been feeling up for doing anything.

Okay, so I've been getting a lot of comments about my Social Security fight and I wanted to just address a few things. I do have a lawyer & I actually wrote a letter to my local Congressman, but I haven't heard back yet. I actually need to write to my lawyer and give them the new information about my urologist and med change ((adding vesicare)).

Let me make a couple things clear though about my blog... I blog to vent, to get it off of my chest before I explode... I'm not always angry and I just wanted to make that clear. I feel that if I keep all my feelings bottled up inside that I will always be angry so I share my thoughts and vents with others. I can't tell you how good it feels to hear from everyone that reads my blogs... about how I have helped them, that's what keeps me going. Knowing that not only am I releasing my thoughts and helping myself, but in the process I'm helping others.

I really want to make a difference when it comes to MS in general. Being the voice of many people living with MS is one way to start. I sit here and think to myself how important it is for us to be heard... because we are the ones that the research is aimed towards. Many people have asked me what I think causes MS... and while I honestly don't know, I've chosen from the causes that the NMSS listed... I honestly think it's infectious. That is, some kind of virus we gets triggers our MS, turns the "MS Switch On". It's hard for me to believe it's environmental, because It's supposed to affect those who live further from the equator and being in Texas... that's not the case for me. As for it being genetic, I'm the only one in my direct family that is... all though I've head of people having it where it's themselves their parent, sibling, etc.... So that could be the case, and that's what scares me... because I don't want this for my children.

I feel like, put me through anything you want, but don't you dare touch my children. I think that's what hurts me sometimes... is that I can't be the mom I once was to them, so in a way they are being affected with my MS and that's not fair. I hear of a lot of people who have MS that get like one attack, then their good the rest of their life... must be nice. While I'm happy that they don't suffer the way I do, I still have that thought in the back of my head that "It's not fair." Then I hear about the people who have probable MS... have all the symptoms and such but can't get a diagnosis... and in a way it pisses me off. Of course, I hope they don't have it... but I want those people to have answers.

It didn't take very long for me to get diagnosed, but still just that short time of not knowing what the hell was going on, was killing me. Especially since I had people around me saying, "Oh it's all in your head"... well yeah you were right, but not in the right context. My diagnosing neurologist put in my medical records in October of 2010, "Significantly concerned of severe morbidity, Significantly concerned that this patient is possible PPMS." While I don't think I'm PPMS, I don't think I'm RRMS either... I have that gut feeling that I'm SPMS, but how can you tell? There isn't a test... their is only time that can tell. And from my readings, 50-60% of those diagnosed with RRMS, get SPMS ten years later...

Yeah, I was diagnosed in 2010, but how long have I actually had MS...? When was that switch turned on? I guess the classification in itself doesn't matter, because either way I have MS... but it would be nice to know. My neurologist told me that I'de be the youngest he knows of to have SPMS, but it suits me to be "non-textbook". If I could have one symptom of my MS taken away, I think I would want it to be my spasticity. It really sucks not being able to use my hands like I once could... and wear a bra! If I wear a bra, I get the MS hug... so I just don't wear one to avoid that torture. If you haven't had the MS hug, be thankful... because it's not a pleasant feeling. It's like your body is seriously squeezing you from the inside out around your chest area.

Ok, that's my rant for the day... I'm gonna go lay down for a bit, even though I've slept non-stop... I'm still exhausted.

xoxo
Ashley

You don't realize what you have...

2012-02-15T09:03:00.003-06:00

You don’t realize what you have until it’s gone. This saying is often used when it comes to relationships…. But I’m referring to everyday life. After being diagnosed with MS at the age of 22 in 2010… I’ve come to realize what I had that at one point I took for granted.

I was an athlete growing up… and a klutz all at the same time. I thought that when I broke a bone and couldn’t play any sports it was the end of the world. But in reality, my wounds would heal and I would play again soon. That’s not the case anymore…

My wounds from MS cannot be healed, I can no longer do things that I once was able to. I see other people my age and actually people in general, taking things for granted in their everyday life.

Most people don’t have to concentrate when they walk, to make sure they don’t lose their balance and fall. Most people don’t have to focus when they are holding something to make sure their hands don’t lose grip of whatever they are holding.

Most people can make it through the day without needing a nap and they can also make it through the day without forgetting what they were talking about mid-sentence.

These are things I have to worry about everyday. Sometimes I get angry at how “easy” others have it and yet they don’t realize it and take it for granted. It’s a huge slap in the face when you are in your young twenties and you rely on assistive devices for your everyday life.

Being in Texas, everyone complains about the weather… but mainly because it’s annoying to them that it snows one day and the next day there is a high of 75. While yes it is annoying, I complain about the weather change for other reasons… because my symptoms are increased with the constant weather change. I can tell when a weather change is coming because my whole body just doesn’t want to function the way it should, medications or no medications.

When it comes to parenting… it must be nice to be able to go on field trips with your kids for their school…. And have the energy to keep up with your kids. I try my hardest for my kids not to be affected by my MS, but sometimes I can’t dodge it.

Most people complain that they have to do laundry and clean the house… while I sit here and wish I could do the laundry and clean the house like I used to. If I’m going to clean the house, that’s my plan for the day… Nothing else can be done because the cleaning will take every bit of energy that I have.

While I get angry at how “easy” others have it… I can’t be mad at them personally, just mad at the situation. It is really upsetting that I had to “take a break” from college, because my GPA was suffering due to my cognitive dysfunction. I went from being in honors, to not being in school at all, because my GPA dropped horribly just in one semester.

It’s not easy for someone as stubborn as myself, to admit to their disabilities…. But yet I’m sitting here fighting Social Security for disability. It’s embarrassing… for one to have to admit that I’m limited in what I can do… but then to have to sit here and fight to prove it.

Multiple Sclerosis isn’t just a illness, it’s a life changing diagnosis. Not for everyone, because everyone diagnosed with Multiple Sclerosis is affected differently. Some can go their whole life, living “normal”…. While others (like myself) must reevaluate everything we once knew.

Some people say, “Oh, you’re just using your MS as an excuse.” Really???? Why would I want to go through this… why would I want to be limited… why would I not want to do something I once could… These things can’t just be “made up” and the pain and symptoms we experience can’t be explained… and there is nothing to compare it to.

Being diagnosed with Multiple Sclerosis has made me redefine myself… Instead of being that girl who was outgoing and up for anything and always doing something (mostly outside)…. I’m now that girl who lost a lot of friends, but made new ones…. Ones that I know are true because they KNOW what I go through. I am now that girl who will do what I can to help others living with MS and to get the word out about Multiple Sclerosis… I was always a strong fighter…. But now my fight has been redirected towards something else… a harder fight, but a fight that has meaning… a fight that needs to be fought… a fight for my life back.

xoxoxo

Ashley

You're Gonna Miss This by Trace Adkins

Happy Valentines Day!

2012-02-14T12:28:00.002-06:00

Well, you know you have been married for a long time when Valentines Day is just another day in the calendar, lol. It's also a time for your kids to stuff themselves full of sugar with all the chocolates and candy they get. I considered buying myself a new vacuum, my Valentines Day gift, lol. Am I getting old, or what?

Well there was a softball tournament this past weekend and of course me being the "team mom" ( the only wife that goes ) I went.... but it didn't last long. Thanks to the Texas weather, my body was killing me and I didn't have my spasticity meds with me, so I had to leave. Lets put it this way... it snowed on Sunday and today the high is 75! My best friend keeps telling me I just need to move to Idaho, where she is lol I'm sitting here thinking to myself, what's this summer going to be like.... Hopefully not 115+ temps, because I couldn't function. I will up and move for the summer if that's the case.

I've been thinking that I'm going to call my primary care doctor and get tested to see if I'm gluten intolerant... because my stomach has been killing me. I totally forgot that I have a urology appointment tomorrow, oh joy. That's one doctors office, I wish I could go without. Last time I went I stuck out like a sore thumb. I was probably young enough to be everyones granddaughter that was there waiting.

I go get my second Tysabri infusion on Thursday... my feelings are still "blah" towards Tysabri. I hope it works, but I'm not getting my hopes up like I did with Avonex because I don't want to be let down... again. I also hope I don't get so tired this time around after the infusion. Last time I came home and slept the rest of the day.

I can't believe my youngest is going to be three on the 19th.... where does the time go? He also gets his cast off the 23rd, which I'm excited for.... and I'm sure he is too. I'm ready for him to go back to school! All though, this whole potty training thing is very difficult with a cast on his leg... I don't think it will take long once it is off. I know he is tired of being in the house all the time... so I've been taking him outside in his stroller, but I haven't been able to walk with him all that much lately. So we just go outside and sit there for a bit.

Oh thanks for the comments on my SS letter... means a lot. I'm going to call my doctor and see if he is going write a letter for my SS appeal.

Oh, I contacted someone about a clinical trial for pain, turns out my neurologist is taking part in the clinical trial and I'm at the point where I will try anything to help get rid of the pain! Because the pain I experience isn't just one type of pain... I have my spasticity, nerve pain, weakness, arthritis & let's not forget my back problems. Sometimes I wish I could wake up and all that I go through was just a bad dream... or it was just magically gone. I just wish that I could go one day without any symptoms and without taking any medication.... but I know that's not going to happen.

Oh here it he link to the clinical trial I was talking about, http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=4546

Well, it's time to rest... be well. Happy Valentines Day!

xoxo
Ashley

Dear Social Security

2012-02-07T12:36:00.001-06:00

Dear Social Security,

Having been denied Social Security benefits three times now, I found that I needed to speak up on my behalf since my situation isn't being completely understood. I was diagnosed with MS (multiple sclerosis) at the age of 22 (8/30/10). Before I was diagnosed with MS, I was an outgoing, sociable, active person. Where now I am limited as to what I can do day by day. I can no longer clean my house the way I once could due to the limitations of multiple sclerosis.

I cannot tolerate heat, and being in Texas, it's impossible to not "deal" with heat. I can no longer go outside and run and play with my kids. I can no longer cook anything that calls for me to use my hands for a long period of time or stand for a long period of time.

I can no longer dress myself while standing and speaking of getting dressed, I can no longer wear a bra because of the MS Hug I get while wearing one. To give you an example of the MS Hug feels like, imagine your body squeezing itself around your chest area, where it causes you so much pain that you can't move.

I can no longer crochet, which was one of my favorite hobbies, but my hands no longer allow me to do so. My hands don't do what I tell them to do and they get stuck in certain positions. I can no longer shower standing up. I must use a shower chair with a hand held shower head and I cannot take a shower unless someone is at home with me.

Two weeks prior to my diagnosis I received my Associates Degree in Criminal Justice Corrections. I was diagnosed with MS the day before I had an interview with the County Jail to be a correctional officer. I tried going back to school for my bachelors but learned that I can no longer handle going to school. I can't remember anything... I forget what I'm speaking about, as I'm talking. I can't remember to pay bills and I can't remember to do things that are asked of me.

To use the computer, I use a voice recognition program, that allows me to speak to it and it types for me. I can no longer go out with my friends because of my fatigue and spasticity. No matter how much sleep I get, I still want to go back to sleep. I cannot go grocery shopping alone and I must rely upon the cart to support me or the power chair available in the store.

I'm 24 years old and I'm dependent on the people around me to help me with every day life. MS has stripped me of my life and the damage that has been done cannot be reversed. I'm not going to wake up and "magically" be better. I can't even take care of myself and the home but yet I'm expected to still be able to work. I have to have an alarm on my phone to remind me of when to take my medications.

I'm 24 years old and I own a walker, wheelchair & cane. When I wake up in the morning, I can't just get up and get going... it takes me a while to start moving and take my medications. I suffer from hearing loss and vision loss. I sometimes do not wake up to my alarm to get my oldest son up for school, so he is penalized for being late at school because of my MS symptoms. My vision loss is scary, but I'm glad I haven't lost everything. I do have optic neuritis in both eyes... which causes a horrible stabbing pain behind my eyes that will not allow me to open up my eyes.

I can no longer do things that I used to because of my urinary frequency. If I laugh/cough/sneeze, I tend to "leak" which means I have to wear a liner "just in case". The constant weather change we experience in Texas increases the symptoms I deal with everyday. Yes, I am on medications to help with the symptoms I experience... but they are never gone. With all the medications I must take to dull my symptoms, they all have side effects themselves, which increases my fatigue.

It's not fair that my life has been stollen from me and I do not like to admit to my limitations. I wish I could work, I wish I could get out of the house, I wish I could be "normal" for a day, but the bottom line is, I can't, but yet I'm still expected to "push through it all" and work.

Some days are worse than others... some days I can actually do certain things that on other days I can't. Everyday I wake up, wondering what I will have to deal with on that day. Just because I seem "okay" one day, doesn't mean I'm that way everyday.

Multiple Sclerosis does NOT have a cure. There are medications to slow the progression of MS, but these medications aren't guaranteed to stop attacks on my Central Nervous System. There is no way to repair the damage that is done. There is no way to predict what will happen to me in the future. I'm dealing with the damage that has already occurred and I hope that no more occurs.

If what I have explained above isn't considered being disabled, what is? I know a lot of people on disability for depression and things of that matter. Well, I suffer from depression, anxiety, stress, memory loss, cognitive dysfunction, optic neuritis, nerve pain, pain, spasticity, tremor, urinary dysfunction, fatigue, weakness, vision loss, hearing loss & swallowing problems. And yes I'm only 24... with an illness that has no cure, where I can't undo the damage done, but I can get worse. There is no predicting what the future holds for me.

My question is... how am I supposed to work with the symptoms I experience? With no telling on what I will deal with on a daily basis... will it be a day that I can actually get out of bed?

Thank you,
Ashley Ringstaff

PS: On top of being diagnosed with the above, I also have degenerative disc disease and spinal stenosis and asthma.

Busy Brain

2012-02-04T17:48:00.001-06:00

My brain has been full of thoughts lately and it's been hard to sort through all of them. I'm sitting here trying to just deal with all of these thoughts and I have no idea where to start. I feel like I'm not contributing to my family the way I should be because I'm not working... I'm just sitting here waiting for my appeal with Social Security. They can deny you real fast, but to appeal it... it seems like it takes forever. And there is still no guarantee that I'm going to get Social Security.

It's like all that's going on in my head is dragging me down and my fatigue is even worse than usual. I've been trying to do more around the house and though it's getting done, it's taking it's toll on my body. I hide the pain because I don't want to be told to not do something that I should be doing.

MS has stolen so much from me and it's not fair. I have my whole life to live, I'm only 24, but yet I'm living it like someone who has already lived their life and done everything they wanted to do. There has to be a max limit of what someone deals with in their lifetime... where is mine?

I don't just have to live with MS but take care of the kids and the house and everything else I do. It's like I already had enough on my plate... then I got diagnosed with MS. I'de like to think it happened for a reason and that I have this for a reason... to make a difference, but of course it's difficult to stay positive all the time. I have my times that I'm angry and upset and confused and this is one of them.

I don't know what the future holds for me and I think that's what bothers me the most. With everything that I'm doing to slow the progression of MS, is it enough? Am I doing everything that I'm doing for a reason.... and time will only tell. It's like a game of chance, there is no guarantee of what will happen in the future.

I've been in a lazy mood... not wanting to really do anything but lay in bed. I just want to be alone and relax and reflect on the thoughts in my head. It's not something that someone can help me do... or even point me in the right direction. It is all up to me start moving forward from my scatter brain and live the best that I can. But for right now, I don't want to leave my bed... I don't want to do anything because I'm not "right" at the moment... to be socializing with others. and I don't want to explain why I'm not my "normal" self...

xoxo
Ashley

Crawling by Linkin Park

Reaching Peace

2012-01-31T10:17:00.001-06:00

I think I'm finally reaching that point where I'm at peace with everything. Things are finally calming down... and I'm coming to realization that things will never be "normal". The symptoms I experience aren't going to go away... they are going to be roller coaster ride and that's something I have to live with. When others ask me how I'm doing, of course I'm going to say, "I'm fine" because what they don't realize is that MS & it's symptoms don't just go away... You can be at your "normal" level of dealing with MS and then you can be in a flare, or something has aggravated your MS/Symptoms. There is never a true meaning of "I'm Fine".

I don't know what's more irritating... living with MS or having people constantly ask me and expect me to be magically "fine". I didn't ask for this... and it's even harder not knowing what caused me to have it. There is no cure... and that's something all of us with MS must live with everyday. I put my trust and faith in the Doctors and Scientists and the FDA to do what's best for those living with MS. Do we all get frustrated with them.... yeah, because they don't have to live with what we have to everyday. So we expect them to do everything in their power for us, but yet that takes time... and some of us feel like that time is wasting away.

I always think to myself.... What can I do to make a difference? I know that I can't change things that go on with science and the FDA. But I think that I can make a difference in the way people deal with MS, even if it's only helping myself. It's hard to stay positive in the fight against MS, I know this... I for one do not always have a positive outlook when it comes to fighting MS. I, for one, want my life back before MS. Dealing with the fact that I will never have my life back before MS, is a daily struggle... but I just feel that if I do what I can to help others, it also helps me. Hearing and knowing I have made a difference in someone's life, besides my own, empowers me to keep going on with what I'm doing.

I'm trying to enjoy my life that I'm living now with MS. I'm still a mother of two handsome (yet at times nerve racking) boys. I told my husband that I would understand if he didn't want to live with MS with me, but yet he is still here.

I know that people look at me differently now.... looking at me like I'm a fragile piece of glass that can shatter at any given moment. I'm proving them wrong by not shattering in to pieces. I'm being strong, as strong as I can be. I do have my days where I cry... don't get out of bed... I'm silent all day, I mean... I'm not strong 24/7... I do have my break downs. But I make sure that after I have my break down, I get back up and pick up where I left off in my fight.

xoxoxo
Ashley

How I live with MS...

2012-01-27T17:45:00.001-06:00

I've had a lot of people ask me, "How do you do it??" Well the truth is, I really don't have an explanation on how I do what I do on a day to day basis... but I get it done in the end and that's what matters. First of all, I put my MS on the back-burner when it comes to my kids. I don't want them to see mommy in pain, or have to suffer from the disease when they don't even have it. So when it comes to the kids, it's all about having a schedule with them and sticking to it. They get up at a certain time every day and go to bed at a certain time every day... that's the time that I can relax and deal with what I need to deal with.

When it comes to handling the stress of everything... that's a whole different story. We are all different in the way our lives play out, but all similar because we have MS. So when it comes to stress, I've learned I can't just "brush" it off... it need to be dealt with or else it just build up and builds up until you explode. So if there is something stressing you out, deal with it the best way you can without causing MORE stress. I have found that friendships really aren't forever since I've been diagnosed and I've learned to live with that. Was it hard, yeah... but those people don't deserve to be my friend in the long-run.

Now when it comes to peoples "advice" that they push on you that you really don't want to hear and just want to smack them... refrain from smacking them for one. Push back though... a lot of the people who push their advice on you with diets, exercise, special things to do to "cure" MS... push MS knowledge on them. Get some pamphlets from the National MS Society, or some other organization and hand them to the people who push their advice on you. Send them a press release every time there is one, GIVE THEM A TASTE OF THEIR OWN MEDICINE! I for one, don't want to live my life thinking I can cure my MS on my own. I want to be happy with my life and my MS and the best way to do that is listen to your doctors they are the only ones you should listen to when it comes to your health.

Now there is the whole cognitive dysfunction ordeal... I now carry a agenda with me and a small notebook. That way I can write something down right away if I need to. Also, anything I have scheduled that is in my agenda... also goes on my calendar on my computer and my phone. I have "alerts" set-up to alert me a day or two before the specific event and then another event 2 hours before the event. This way I can't forget. Oh and that dreaded medicine list you have to fill out and almost every doctors appointment.... Keep a updated list on you at all times! This way you can just have them make a copy of it.

It's not easy living with MS ... but I'm trying to do make easier on myself everyday. With the technology we have available today... it also makes it easier for us to be as independent as we can. When it comes to paying bills... see if you can set up "auto-pay". If this isn't an option see if there are bill reminders available. This is something you can also put in the agenda and phone to remind you about.

Don't settle for anything less than what you deserve. I for one, knew I wasn't getting the best possible care with my MS so I went and got a second opinion from an MS Specialist. Someone who is much more informative about multiple sclerosis. And I don't find myself updating my neurologist on new MS research... it's the other way around. It's also nice to keep a journal of your daily symptoms... that way you don't have to "remember" them for your Doctor's appointments!

The best thing I have done since being diagnosed is getting involved. I don't sit around and watch TV or do anything that lets me think of the pain and struggle I go through everyday. Kind of like, out of sight out of mind. Keep busy! Volunteer with an MS organization or just be your own advocate about MS. Get some hobbies and keep up with them. If you can't do hobbies that you used to, find a new one. Don't let MS keep you from living... just live your life in a different manner.

I know it's hard to stay positive... and I'm not positive all the time, trust me. We all have our moments where we wish we had a different life with a different body. That's not something we can change though. It's okay to have a bad day... it's okay to be mad and it's definitely okay to vent. I know it's easier to put a smile on your face and say "I'm fine"... but the people who love you and the people who matter will know the truth.

The pain doesn't go away... the damage that has been done cannot be reversed... but how you deal with the pain and damage is what makes up who you are with your MS. If people have something negative to say about you because you have MS... forget them, what do they know? People don't know what we go through until they go through it themselves. Are there people worse off than me, yeah.... but the fact is I'm still dealing with things that I don't want to. Everyone also needs to remember that MS is a disease with no cure, that "normally" doesn't shorten the life span.

I am learning and dealing with the fact that my life will never be what it once was. It hurts... and it's going to hurt for a while. But I don't want to be an unhappy person all the time. That's why I'm doing what I do. The more you connect with others that know what it's like to live with MS.... the better you will feel that you are not alone. I know that I can't hide my MS, so I show it loud and proud that I am a strong fighter in a battle with Multiple Sclerosis.

Thank you to everyone who has been reading my blog and leaving me comments. It means so much to know that while I'm documenting my feelings and journey, that I'm also helping others along the way.

xoxoxo
Ashley

Neuro Check-Up

2012-01-26T17:29:00.002-06:00

I had an appointment today w/ the neuro & he is glad that I didn't have many side effects to my first Tysabri infusion. All I experienced was major fatigue afterwards, which I slept all day because of it. We did the usual check of my motor skills, my whole right side is weaker than my left, go figure. I knew that was coming because I notice it everyday. My next infusion is February 16th, so we will see how that goes. He said the more and more I get infusions, the more my body will recognize the medication and adapt to it, so that's a relief. Sleeping all day is not something I like to do, even though my body calls for it every now and then and I don't listen.

I have a follow-up in three months with him, I think that's more because of the Tysabri. I'm wishing that I could get full strength back in my right arm/hand because I miss crocheting. Plus, I really think it's going to mess up my fishing skills, if I go anytime soon. I have to make sure I'm on my "A Game" when I go fishing so I can do better than the hubby LOL

I took Luke to his Ortho appointment after my appointment and he got his cast put on. It's blue, they couldn't do a camo cast like he wanted. They did give him a walking boot and said he could walk on it every now and then, since there is no stopping a two-year old. I'm so relieved my mom is here, maybe I can get some sleep now. I've been up in the middle of the night with Luke cause he was crying in pain and we also had some really bad storms come through... but at least we got some rain from it, Texas really needed it. We still need a lot more.

So i've really been trying to get my MS off my mind 24/7... any ideas on things I can do to keep busy? I hate having my symptoms smack me in the face all the time, so I'm trying to do the whole "out of sigh out of mind" thing... James has been playing a lot of softball lately, and I get to keep the score so that keeps me busy on the weekends and stuff and it's fun. (I have a slight obsession with sports)

I haven't been to the gym in a while, things have been crazy and I really need to get back to it. I guess the bad experience I had there kind of made me stray away from it... I was trying a work out w/ a dumb bell and I lost my balance and people laughed at me... and I really wanted to take the dumb bell and throw it at them... but refrained from doing so.

I guess it's time to rest, I've been on the move all day long and it's whooped my butt.

xoxoxo
Ashley

Longest day ever!

2012-01-23T22:30:00.001-06:00

Well last night my youngest son, Luke, decided to superman off the top of the bunk bed. I took him to nearest ER and they did x-rays of his knees and pelvic area. It all came back fine.

He screamed all night and all day so I took him to a children's hospital and come to find out he has a spiral fracture to his right tibia. So he is in a full leg splint until we can see an ortho, who will put him in a full leg cast. Needless to say I'm exhausted. And the next 4 weeks are gonna be very hard considering he won't be able to walk or anything. Just what I needed to happen, right?

My mom came up to help me... She has to go back to work in the morning but will be back up Wednesday evening. I'm just glad we finally got some answers for Luke, it killed me to see him in that kind of pain. They have me a script for a pain killer for him so that's good.

I was looking forward to relaxing last night but that's far from what happened. I'm running on like 2 hours of sleep and I know I'm going to pay for it. But it's okay, my baby needed me and I'll go through anything to be there for him. Though it's not going to help anyone out of I hit rock bottom.

Even though he is gonna be out for. 4 weeks... At least he can't terrorize anything and I can rest when he does z he won't be going to mothers day out for the time he is out. All I can say is my kids take after me.... Their lovely clutz mom lol

Well, it's gonna be a short one tonight, I'm exhausted.

xoxo
Ashley

Here are some pics of Luke and I lol he was so medicated it was funny.

Weird Feeling

2012-01-22T17:41:00.000-06:00

So, yesterday I was at the softball fields ALL day long. It wasn't hot outside... which was a good thing, because it was supposed to be hot. After the softball fields, James and I went out with some friends and got home REALLY late. I think that did me in. I've felt "weird" all day. I had kinda gotten out of the funk I was in, but now I think I fell back in to it.

I haven't been doing what I usually do everyday. Today, I've just wanted to go back to bed. I did do some research on a medication I was taking, Abilify, and I really feel like that has contributed a lot to my weight gain from what I've read. I stopped taking it and I'm not stressed or anything... and I got in to a funk before I stopped taking it, so I don't know what the deal is.

I at least got laundry done today... that even made me feel worse. I think after dinner I'm taking a shower and going to be REALLY early. I don't think it has helped that I've been trying to push through everything and not lay down when my body wants to lay down. I feel like if I do lay down that I won't get up. It's kinda like... "I'm giving in" and I don't want to.

I guess I need to realize that I can't always push through everything when I want to. Sometimes I do need to take the time to sit down and relax when my body is forcing me. I also don't think the weather has helped out at all. It was like 40 yesterday and 80 today.

Once I start getting money from Social Security (if I win my case), I'm calling a cleaning service to come like once a month to do the DEEP cleaning so I can just maintain the cleaning. I feel bad that when my mom comes up she cleans and does my laundry... but then again I don't stop her because I need the help.

My mom is coming up Wednesday night... I have a neuro appointment on Thursday. So she wanted to be there for that. I don't like going by myself. I don't really like driving myself anywhere these days because driving has gotten very difficult. I just don't want driving to be something I give up on also.

I need to figure something out about full-time daycare for my youngest, Luke, because it's getting harder and harder to care for him by myself. I mean if taking care of him was all I had to do, then yeah I could do that. But there are other things I have to do throughout the day that takes some of my "spoons" away. I'm referring to the Spoon Theory if you haven't heard of it, check it out.

James is making dinner tonight... which is a BIG relief... because if it was up to me t

In a funk...

2012-01-20T21:39:00.003-06:00

Yeah, I haven't been feeling myself the last couple days... I don't know what's going on with me but everything is heightened. My fatigue and depression are the two things that are sticking out the most. Yesterday, all I wanted to do was sleep. I didn't want to move or talk or even watch TV, I just wanted to lay in bed in the dark. Do you ever get like that?

It probably didn't help out things that I fell down the stairs yesterday too. My right leg just gave out on me and tumbling I went. It's been doing that a lot lately. I've also been under a lot of stress and arguing a lot. I just want to be in a bubble pretty much. It's just not "me" to just want to lay around in the dark doing and watching NOTHING. It took all I had to even get up and take a shower.

Today has been better, I've actually been somewhat productive, but still in that same depressed mood where I don't really care about anything. My neuro said that if my depression gets worse all he can so is refer me to a psychologist, because I'm already on Cymbalta and Abilify.

Even though I'm tired of arguing with people, I'm still in an arguing mood... like I'm just ready for it if anyone pushes me the wrong way. WHAT IS GOING ON WITH ME?! I really think it's my depression that is doing it and making me have a "I don't care" attitude. I'm not saying I'm suicidal or anything because I'm not... but I just don't really care about anything at the moment.

On top of it all, I'm tired. I'm tired of arguing with people... I'm tired of fighting Social Security... I'm tired of wanting to work and not being able to. I'm just tired of it all. I should have a "WARNING" label on my forehead right now so people don't approach me with any type of bullshit.

I really feel like a bad mom because I'm not "here" for my kids. Like I take care of them and everything but my mind is not "here". I've been putting on a fake smile for not just them, but others as well. Acting like I'm alright and acting like I'm happy ol' Ashley. When really, I'm screaming inside to just be left alone. James wants to take me hunting the first week of Feb. and I actually want to go to like get out of the house and see if it will do me some good, then part of me is like.... why even try? I still don't know if I'm going yet, don't know if I'll have a babysitter.

I've been thinking about putting Luke, my youngest, in to a full-time daycare so that I can focus on me and getting back on track in life and seeing about school. I hate not being in school, but I don't miss the stress of being in school. It was a good choice for me to take a break because my GPA was suffering really bad.

I think I'm just at that point where it's like, I'm tired of people trying to understand how I feel and why I feel that way. I just, don't want to hear it. I don't want any advice on what I "should" do to feel better about it either. I want to get past this on my own... in my own way. Does that make sense? I feel like I'm in a crowded room screaming and crying and no one can hear me. I know the ones that are close to me know something isn't right... but they know I don't want any of their comments at the same time. I just keep thinking to myself, "How do I get better, w/ out changing who I am?" because I like who I am... just not how I feel at the moment.

A bigger question I have for myself... "How much fight do I have left?"

xoxoxo
Ashley

So Small by Carrie Underwood

Stressed & Busy!

2012-01-18T07:51:00.003-06:00

Sorry I haven't posted in a while. I've been SUPER busy & SUPER stressed. I changed rooms w/ my father in law, so we now have the master bedroom and that's taken a lot of time! (I'm an organization freak) We also ordered a dumpster so that we can clean & throw out a bunch of stuff... and on top of it all, I've been looking at other degree plans online for when I go back to school and I've been busy with MSWorld stuff!

I made a decision that has lifted some weight of my shoulders. A "friendship" I valued, wasn't really a friendship at all... and instead of dragging it out to be hurt more and more, I just 'deleted' the person from my life. I can't take any stress, or being "one up'ed" all the time. I am thankful for the friends that I have and where I am today, and I don't need anything/anyone dragging me down.

My body has been going through a lot as well... this weather change is just horrible on me... I can say that the Tysabri has given me more energy.... but it doesn't take away the pain that I have. I went to the urologist yesterday..... that was, interesting, to say the least. I have to go back next month for an evaluation... He said that I have a "stress induced bladder"??? Something like that. Basically when I cough or anything like that I "leak"... and don't be GROSSED out about it, because it's the trust and a lot of people suffer from urinary issues with MS.

I have my check-up with my neurologist next Thursday, so that ought to be fun! I'm interested as to what all he has to say about everything going on. I used to feel annoyed when going to the doctor, now I'm a bit excited because I get to know more about what's going on. But, I was also not as excited to go to the neuro, when I thought everything was fine w/ me on Avonex and that wasn't the case.

Everyone keeps asking me if the Tysabri is working.... and I'm thinking to my self "Hold on, while I step in my MRI booth and see!" It's like do I have more energy, yeah.... but do I know if it's "working" no... I would have to get an MRI for that.

I'm still waiting to hear back if I can take part in a clinical trial for Spasticity. It's for a drug like Baclofen (the med I'm on) but w/ less side effects. Hopefully I will hear something soon.

Well it's time to get some chores done.

xoxoxo
Ashley

Cool picture I took in my front yard.

Hello Tysabri Energy!

2012-01-15T16:57:00.000-06:00

Oh my gosh! This energy that I have is so refreshing.... yet I still can't do everything, it's nice to not yawn 24/7. I've found that my cognitive issues seem to be improving. I'm of course not good cognitively in the morning and late at night because my medication is not in my system.... but something is something, right?

Yesterday we switched rooms with my father-in-law, who had the master bedroom. I now have room to walk in my room without falling... have a nice walk in closet and a bathroom to myself, with a big tub! ((just gotta get the hot water working in it)). It feels good to be able to come to my room and not worry about tripping over this and that. Though that is still a thought and possibility at times.... it's not every time.

I got myself an agenda book that I carry with me in my purse... it's smaller than the one I had before. This way i can write something down whenever needed, because it also came with a notepad, address book, etc. It's nice that there are things out there to accomodate my cognitive difficulty. I have it to where anything on my phone and or computer calendar sync with each other. It also alerts me a certain time I say so, before the event.

Texas is going through, yet another, weather change. I can feel it horribly... me over doing it could play a part in it. I'm the type of person that... once I get started, I don't want to stop. I usually have to have someone MAKE me stop... it's even hard then, because I'm hard headed (yes I'm admitting it).

I'm hoping that 2012 will be a much better year than 2011.... HOPING is the key word. I've been dieting (not juicing << gross). I think that has been a big contributor to me feeling better as well. I've also been going to the gym, not the past couple of days, but hey at least I'm going. It's not like the days that I haven't been, I'm just sitting around the house... I'm trying to keep busy and do some small work outs around the house.

I can honestly see a change in my boys attitude, now that I'm feeling better (finally). They are getting some of their mom back, and it makes me want to cry tears of joy the way they love me and light up when I actually move around more outside with them... instead of sitting and watching. I just hope that it all stays this way, I don't want them to go on a roller coaster ride of emotions due to my health.

Well, I'm going to go situate some more things in my NEW (to me) ROOM!

xoxoxo
Ashley

First Tysabri Infusion

2012-01-13T10:15:00.001-06:00

Well, I had my first Tysabri infusion yesterday! It went really well, I did get chills and I got VERY fatigued, so I slept almost all of yesterday. I don't think my allergies helped out that factor at all. I noticed that my tremors increased, so I took another baclofen and they went away for the most part. I feel great today, besides my allergies!

They gave me my appointments all the way till May, so I'm getting my infusions pretty much in the middle of the month, each month. It was kind of relaxing being there... no kids, no one to bother me... it was nice. I'm actually looking forward to my infusions now! lol I'm gonna call my lawyer today to see where we stand on the appeal process. I really need to send them my important records, but it wasn't letting me last time I tried... So I'm going to see how I can get that done. Maybe try from a PC to send a large file? I don't know.

I just wish the appeal process would hurry up... I want to know if I'm getting it.. or if I have to find a job working from home, and tough my way through it. My memory is so bad, I don't see how I could do it, but if I don't get Social Security.... I guess I'm going to have to try.

Taking a break from college this semester is a BIG relief. I am less stressed... and it feels good. I do want to go back though.... again, depending on my Social Security. It's like, they can say NO your DENIED really fast... but when it comes to the appeal, they take their sweet time. Very frustrating, I must say.

My mom came up last night, since I had my first Tysabri infusion, she wanted to be here in case I needed her. We are going to go grocery shopping soon, and hopefully I don't need any assistance this time... but we will see. My next neuro appointment is the 26th... I'm going to really talk to him about my disability and see what he has to say. I have a feeling that it really depends on what the DR says when it comes to my case... and I want to know what he is saying.

Of course not a lot of people can understand how a 24 year old can be disabled, but it's possible, trust me. I didn't go to the gym yesterday cause I felt like crap, and I was sleeping... hopefully I can go today to tough through some things. I saw that they have a pool, but it's outside. I've heard water aerobics really helps those with MS, and I want to try it. The only thing is, being the pool is outside, I'de have to do it in the TEXAS SUMMER, which we all know is not the best weather to be in.

My nurse at the infusion clinic told me that I will have more energy with the Tysabri for like 3 weeks, then the 4th week I will be a little slower, then I will get my infusion and get back on track with energy... can we say roller coaster ride! Tysabri "Active Source" contacted me about being a mentor for Tysabri once I get more infusions. I was going to be a mentor for Avonex, but seeing as it didn't work for me, kinda hard to do that.

I'm crossing my fingers and praying that Tysabri will work for me, because not having anything that will help me will be heart breaking. Just the thought of being out of options is heart breaking, and that's something I don't want to deal with.

Well, I'm gonna get going now. I hope everyone has a good weekend! It's Friday the 13th... AHHH! lol

xoxoxo
Ashley

Nervous about tomorrow...

2012-01-11T22:08:00.001-06:00

My first Tysabri infusion is in the morning... I'm hoping I can sleep tonight. When I'm nervous or anxious about something... I tend to now be able to sleep well. On top of being nervous... my allergies are kicking my butt right now. You know you live in Texas when your 3 day forecast is.. High of 51, High of 75, high of 52... REALLY?

Anyways, I keep reading over the information Tysabri sent me... I'm thinking I'm going to go in there w/ comfy clothes on. I'm a sweat pants kinda girl! I think sweat pants and a book and a blanket... I'll be good. I'm really crossing my fingers that I don't have any type of reaction with it. I'm already having some symptom issues as it is, I don't need anything added on to.

One thing I've realized about MS... that I think really needs to be voiced in our MS Awareness. People need to realize that we don't live w/ a "flare" everyday... we live with the symptoms... along with symptoms comes medication... along with medication, comes side effects of the medication! It's like a spiral effect that just doesn't stop and that's what people don't understand.

"Oh, you seem like you're doing better".... then you think to yourself ..'hmm maybe cause I took more meds' lol I over did on Monday & I'm still having issues w/ stable walking... My legs keep buckling on me and it sucks. It's scary to get around when you can't even trust your own legs! I can't even explain the things that I go through everyday! I don't want to even try to explain what I go through everyday, because it's like explaining things to a wall, things to sink in. When people can't relate to you, they can't understand. But then there are those people who always "one up" you... where it's like oh yeah I've had that, it's not that bad, just deal with it. Those are the kind of people need a reality check.

I've been extremely fatigued lately... I don't know what's going on, but my fatigue meds aren't working & I just yawn ALL day long! I don't get it... it's so hard to decipher what's causing what and why! On a good note, I did get my pajamas and journal today that I ordered from the MSWorld Store! Comfy pajamas... I wish I could wear pajamas all the time!!!!!!! Just live in the pajamas lol I'm such a lazy person!

Well, speaking of fatigue, I'm going to bed.

I will let everyone know how my infusion goes tomorrow.

xoxoxo
Ashley

First Infusion SCHEDULED!

2012-01-09T20:00:00.002-06:00

I'm like... so excited and nervous right now. I spoke w/ the infusion clinic today and I am going in on Thursday for my first infusion of Tysabri! I'm gonna have my blanket, computer and a book! Two hours is a long time! My mom is coming up that afternoon to help out, in case I have a reaction to it or something... Which I'm hoping that I don't.

I went to the gym again today... It feels good going to the gym. I know that I'm strengthening my muscles and everything... but later on my legs and everything are just weak... I keep grabbing on to things, expecting to fall. One thing that really upset me at the gym is that I was trying to do this one arm/leg work out that James showed me.... and I was like I don't know if I can hold my balance, but I'll try it anyways...
So, ya.... I tried it and busted my butt... which I'm used to falling so that isn't what ticked me off. What ticked me off was... this guy close by was freaking LAUGHING.. SERIOUSLY? It took all I had to not go off on him, or throw the weight at him I had in my hand.

I'm just trying to do my best that I can... and people laugh, it's like a slap in my face. I mean, I already was having issues earlier at the gym. I was walking on the treadmill & my left foot went numb again. I had to hold on to the sides just to make sure that I didn't trip and face plant on the treadmill. I'm glad that when I'm at the gym, James is there, in case anything was to ever happen to me. ((knock on wood))

As of right now, I don't want to move! My knees keep giving in, so I don't really trust them at the moment. I'm still ooberly excited/nervous to start Tysabri. I haven't been on a DMD since the end of November. I'm hoping that I have NO more flares.

I don't think that the constant change in weather here in Texas, really helps the way I'm feeling. It's like a roller coaster in temperatures... once I get used to the weather, it changes. It's like really... GIVE ME A BREAK MOTHER NATURE! Like seriously... look at this weather forecast:

This is sooooo tiring! Well, I'm exhausted... I'm going to take a nice bath & go to bed.

xoxoxo
Ashley

Too fatigued to move!

2012-01-06T09:31:00.000-06:00

I had the LONGEST day ever yesterday! I left the house at 9:15 and didn't get back home to actually sit down till a little after 4! I did go to Walk Aide yesterday... and tried out their device. I didn't really realize how weak and how bad my foot drop was on my right foot. The lady told me that the nerve that the "electrodes" had to go on were normally in this certain spot, as she pointed to it... I warned her that I wasn't text book. What do you know, I wasn't. My nerve was like in the bend of my knee on the back... So we go the device set up and I walked with it! I didn't realize how much I was actually dragging my foot till the device actually picked up my foot, like it's supposed to normally function. If you don't know about Walk Aide, click here. I didn't know that over 60% of the people using the device, have MS.

So after that was all done, I went to the grocery store... I started off by pushing a basket, but ended up needing assistance and getting a scooter. I didn't tell anybody this, by the way. One of the girls that knows me that works there, knew I wasn't doing good and pretty much forced me in to the scooter lol Gotta love the people at my local grocery store. They just know me from shopping there and they are so kind and know me by name & know about my condition.

Needless to say when I finally got home, I was exhausted. Even with my fatigue medicine.... I just wanted to sleep. I actually didn't even hear my alarm go off this morning. I don't know if I don't hear my alarm because I'm so fatigued... or because of my loss of hearing, or both. Anyway, back to the whole gait thing... My mom helped me read my medical records, and it said that my gait is "wide and exaggerated", I don't really know what that means, but I know that my gait isn't "normal".

I was going to go to the gym today, but they didn't have my reservation right for the day care... and I'm experiencing major foot dragging this morning. So I think I'm just going to take it easy today. I was going to try and clean the house & do laundry.... but I don't think James is going to let me try. I feel bad that he just got home from working a 24 hr shift and now has to do the things, I'm supposed to be doing. It makes me feel like I'm "lazy" and not holding up my job as a house wife... but what can you do, when your body holds you back from doing things...

Yesterday though I did do something that is going to help out a lot... I signed up for automatic bill pay on the majority of our bills... so that's something I don't have to worry about doing and/or remembering. It's kind of like a weight lifted from my shoulders... and I don't have to worry about people calling saying the bills aren't paid.

James is supposed to take me to a Basketball game tonight, hopefully I can make it. I really don't like using any kind of assistive device out side of the house because I get aggravated when people stare at me. Again, that's when you need a slap a stupid button. I want to make/get a shirt that says "take a picture of my disability, it lasts longer" or something along those lines... maybe I'll put it in the MSWorld CafePress Store..? What do y'all think?

I'm hoping that since Luke is home today cause he doesn't have mothers-day-out that he will take a nap so I can take a nap as well. Again, even with taking my fatigue medicine... I'm exhausted. It's not just the "tired" feeling though, it's like my body is tired as well. I keep yawning and not even coffee is helping right now. I guess I'm just going to lay around the house today and hopefully this rest will make sure I'm feeling better tomorrow... so that I can do my house wife duties, or attempt it lol

Since I was too tired to blog yesterday, I did write a poem... if you want to check it out, click here.
For those that are reading this, I really hope you are a member of MSWorld.org because that has been my support group through this journey... and I know that it helps so many others living with MS... even caregivers.

Well, I'm gonna go lay down, everyone take care and have a good EASY weekend.

xoxoxo
Ashley

Lazy Song By Bruno Mars

Sick & Tired of being Sick & Tired

2012-01-04T19:48:00.002-06:00

Okay, so yesterday I started going to the gym and omg I hurt. I was just walking the track and my left foot went completely numb.... I was like 'Oh you've got to be kidding me!' I mean, I was just walking... So needless to say, my work outs are very mild right now... not something I'm used to. I was in athletics growing up, so I'm used to a hard core work out... but I'de rather take it easy than end up in a wheel chair!

I've been EXTREMELY fatigued lately... I'm getting enough sleep... but I just don't want to get out of bed. Jason missed the bus this morning cause I didn't wake up. My father-in-law called me at like 7:15 asking if I got Jason off to school and I got out of bed (which takes a bit for me to get moving). I had to drive him to school... and I'm not a morning person AT ALL.

My cognitive issues & memory issues have been increasingly bad as well. I've been keeping a notepad and pen near by me so I can write anything & everything down, so I don't forget! Very frustrating... I'm probably gonna end up with post-it notes everywhere, little reminders on what I need to do. The bad part is, sometimes I can't grip the pen... so reading my "reminder" later on... is horrible.

I've been looking in to degrees that I could do... in order to work from home. I just don't want to commit to a job, and not be able to be there... or SLEEP IN. I just don't like making promises I can't keep. So, I'm very cautious as to what I commit to. I'm still wondering what's going to happen with all of this SSI crap.... I hate the waiting game and I just get more and more frustrated each day. Yeah I get it, I'm young... doesn't mean I can do everything that people my age are doing! Cause I CANNOT do what most people my age are doing and it sucks.

I'm getting more and more used to my limitations each day... though it's frustrating, time is healing. I'm not like I was when I was first diagnosed.. because when I was first diagnosed I didn't know about MS, I didn't know what could and would happen to me. So I was in like a dark hall of cluelessness. I'm more educated about MS now... and more involved in the MS community, which I love.

I love that I'm actually doing something about it... I feel like that kinda evens my emotions out about MS. It's like okay, yeah I have the disease and it sucks... but what can I do with it... what can I do to make a difference. I've been REALLY active lately with MSWorld, the place I volunteer for... I helped make an online store for MS apparel and merchandise... it's like being creative & really expressing my MS.. It's like blogging in a way... you can design your feelings, if that makes ANY sense at all.
Here is the store link: http://www.cafepress.com/msworld1996

Well, even though I've only been awake for 12 hours, I'm exhausted... I'm glad I get a "break" tomorrow with James at work & the boys both at school... Plus, I need to scan and send my mom my records, cause I can't read my DR's handwriting ... and she is a nurse w/ experience on that lol I will let everyone know what it says. Take care!

xoxoxo
Ashley

Oh, before I forget.... I re-scheduled my urology appointment, I go the 17th! Hopefully I can get my "issue" under control... cause it's driving me insane!

Happy New Year!!

2012-01-01T20:10:00.001-06:00

I can't believe I made it to midnight last night... I was so exhausted... I went to bed shortly after. Today I had to cook & bake some more for New Years Day lunch at James's aunt's house. I'm glad that all my baking tasks are done for a while. We had some people over last night for a get together for New Years Eve, however, a lot of the people that were supposed to show up, just didn't and didn't tell us that they weren't coming either. That really pissed James and I off, I hate flakey/shady people.

Jason w/ his sparkler!

I'm glad the boys go back to school this week! Hallelujah! Tuesday, I might go shopping w/ my giftcards :) That is, if my body will let me. I kinda had it out w/ some people last night about this whole healthy eating thing... Am I against eating healthy NO but do I want to be vegetarian, HELL NO! I'm a Texan... it's against our nature to be Vegans lol I pretty much made them shut up when they were pushing the subject that it will make me feel better and "heal" me... I said "Okay, I understand eating right will make me feel better all around, doesn't have to be straight vegan diet for one. And for two, IT CAN'T REVERSE THE DAMAGE THAT HAS ALREADY BEEN DONE IN MY BRAIN... THEREFORE IT CANNOT "HEAL" ME!!!!" That was about the time that we changed the subject.

My clean house is no longer spotless!! I'm so pissed, but I knew it wouldn't last long. Oh well, at least I got to enjoy it for a little bit anyways. The boys didn't make it to midnight, they were exhausted! Now that the holidays are over, I'm going to go on a strict diet of healthy meats and veggies! I've lost a lot of weight that way before and felt better when I ate that way, so I'm going back to it.. I wasn't going to diet during the holidays though, because that's just stupid.

Luke w/ his sparkler!

I feel that I only have ONE life to live... and I'm going to make it the best life that it can be. Even though I have to deal with MS everyday... I'm still going to make it the best it can be. I did notice when I was eating really healthy that I felt better... like more energy, but none of my other symptoms went away. Spasticity is one of the biggest symptoms I deal with along with cognitive issues... I'm really thinking from what I've heard and read that Tysabri will really help me out in that factor.

I'm also ready to be out of this bad mood I've been in like, all of December. I've just been on edge and testy I don't know if it is the stress or what but omg I have been one big biatch. I feel bad that I've been that way, but then again, sometimes I don't feel bad because some people deserve my bitchiness. I'm just not the kind of person that puts up w/ crap. I don't give people trust right off the bat, they have to earn it... and once you break that trust... and talk crap or do something sneaky, I'm not going to just get over it and forgive you. "I will forgive ( at some point ) but never forget."

I feel very isolated these days. I used to have so many friends around me all the time, now I have.. none... well I have friends from MSWorld, but they aren't "around" me if you know what I mean. Though I've been isolated socially here... I actually feel better off... it's like I got the bad seeds out of my life and the only thing I can do now is move forward and be a better person. That's been my goal since I've gotten diagnosed is be a better person... and actually make a difference, and I finally feel like I'm making that difference.

One thing about me is, I don't really have a censor... I say what I want to say, when I want to say it... and if you don't like it, TOUGH. I've really been trying to work on that... but it's going to take some time. I just can't stand fake people and friends that do shit behing my back... don't be involved in my life if you are going to be that kind of person, ya know?

I'm just glad that I'm finally getting my life on a track that I'm happy with and I'm moving forward and leaving all of the bullshit behind me. Here is to a New Year and New Start!

Well, Happy New Year everyone!

xoxoxo
Ashley

Jesus Take The Wheel by Carrie Underwood

Why me?

2011-12-30T21:35:00.001-06:00

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

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

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

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

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

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

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

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

xoxoxo
Ashley

Very accomplished but hurting...

2011-12-29T21:31:00.001-06:00

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

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

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

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

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

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

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

xoxoxo
Ashley