Wednesday, February 29, 2012

Really Fatigued...

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.


Thursday, February 23, 2012

Symptom Awareness???

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.

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

Wednesday, February 22, 2012

Emotional Rollercoaster

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.

Sunday, February 19, 2012

I made an OOPS!

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.


Wednesday, February 15, 2012

You don't realize what you have...

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. 


Tuesday, February 14, 2012

Happy Valentines Day!

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,

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


Tuesday, February 7, 2012

Dear Social Security

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.

Saturday, February 4, 2012

Busy Brain

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...


Crawling by Linkin Park