Following my Blog

Just an update - I haven't "stopped" blogging... this is still my "personal" blog spot... However, I am currently blogging at MultipleSclerosis.net - so to keep up w/ my blog posts, check out the website.

You can also follow me on FB: https://www.facebook.com/AshleyRingstaffMS
You can also follow me on Twitter: https://twitter.com/Ashtabulous

Been Too Long

Well, it's been a while since I've posted a blog post... I've been so busy with the kids & the Holidays... and I've had my head stuck in books upon books, leaving reality behind!

It's finally feeling like Winter in Texas... okay, not like the northern states get Winter, but it's under 70 outside, so that's cold enough for us. I hope everyone had a really good Christmas! I know I did!

I'm so ready for 2013... New Year... and BG-12 will be out! I'm just counting down the days on the calendar!

I've finally come to the conclusion that my body and MS absolutely HATE the heat! I feel so much better now that it's not 100+ outside everyday! I'm not saying that I'm 100% free of MS symptoms, but they have eased up a bit, which I'm thankful for... I have been miserable every Summer since I was diagnosed with MS.

I have been having to bake a lot lately & my hands have been mostly cooperative with the process! I have to take breaks here and there - or ask someone for help, but it feels good to be able to actually do something I enjoy... hopefully I can get back in to crocheting soon... I'll take anything I can get, but I of course, am not going to expect everything to magically get better.

I've been giving my  brain a rest lately... which I didn't realize I needed until I actually took it. I usually try and keep my mind busy to challenge myself with games or tasks to hurdle over... so that my cognitive issues don't take over. I'm glad that I decided to take the breather, it's refreshing!

Now all I need is to schedule a massage... while it's cooler outside we have had our "ups and downs" of weather change... so my body has taken the toll. I just need to get some knots worked out.

Having the kids both home from school has been... busy and entertaining, to say the least! Speaking of the kids, they are not wanting to go to sleep...

I hope everyone begins 2013 with a BANG!

xoxo
Ashley

I got APPROVED!

Sorry it's been a while since I wrote anything. I've been super busy and I keep getting side tracked once I try and sit down to type up a post.

So... I had my SS hearing on 11/5 ... and I was APPROVED! AHHHHHHH! I was so excited and I still am! Even though I was having a "tough" time during the hearing.... it kind of made me feel dumb.
I had to keep asking my lawyer if he could help me understand what the judge was asking... and I have a degree in Criminal Justice, so it's not like I didn't know the terms... but he was just talking REALLY fast and I couldn't keep up and I was getting confused very easily.

On one of the judge's questions... he asked me what my neuros prognosis is for me... and I told him, "Honestly, you can't predict MS"... he said, "Okay, but what does your neuro say is in your future for your health?" I said, "Judge, he knows better than to promise me something that he isn't sure he can keep."

I really don't think this judge knew ANYTHING about MS... It was difficult to get through the hearing... Not because I was nervous or anything ( I kinda was ) but he was asking those questions that I don't like thinking about... Like how have things changed in my everyday life... How have things changed in the way I do things with my kids... How things have changed with my around the house chores... I know these are things that need to be asked, but still... it was upsetting to actually have to explain things in depth. Especially how I can't do everything that my kids want me to do... that was the killer.

So, since I'm so "young" (even though I feel like 80 sometimes... especially in the morning when my body does a 'snap, crackle, pop' to get out of bed) I don't have enough "work credits" for SSDI, so I was approved for SSI.

So now, I have to wait for someone to contact me to set up an appointment to figure out my monthly payment, but I was also approved for back pay since April 2011... but my lawyer is gonna try and get it all the way back from when I was diagnosed, since I was diagnosed the day before I had a job interview at the County Jail.

Oh! and I had no idea about this... but I'm automatically approved to be on medicaid? I guess I have to wait for so long to be on medicare? I don't know how all that works.

I'll give more updates on it soon when I hear more.

On another note, I'm waiting to see my neurologist because I might be in a flare? I went in earlier this month from a HORRIBLE reaction to Copaxone in my thigh.

This was 6 days after my injection! This is like
the whole bottom half of my left thigh. 

I injected on the top part of my thigh.. and
this is what happened. 

So, when I went in - they said to have the Copaxone nurse come out and look at it... when she did, she said she had never seen anything like it & was going to contact shared solutions... so I went around this whole back and forth circle of trying to figure out what happened - and they are saying that they think I hit a blood vessel. So who knows? Oh and I injected manually... btw.

I'm hoping their is a cancellation or something at my neuros office soon, because the only opening they have is for the 27th... I am having a new (annoying) symptom too... on top of being more fatigued than "normal" ... I am now having like twitches? I describe it as like my body is having a party under my skin and I'm not invited. It keeps jumping around and it is happening everywhere, even in my right eye.
Here is what it is doing, this is my left thigh by my knee cap. http://www.youtube.com/watch?v=mq_bKS6ikEU&feature=g-upl

I'm keeping note of all my symptoms - and if they are increasing and how long they are lasting... I just hope that it's not a flare. But I haven't been on Copaxone for the 6-month time frame for it to be fully "working"... or at least TRYING to work.

Well - it's time for me to take a break... my eye is doing the annoying twitch thing. I'll update when I can! Oh - and next week I will have 3 blogs posted on MS Conversations (MSAA Blog). Be sure to check it out & let me know what you think! I've been asked to be a monthly contributor to their blog... and I hope it helps people and that others can relate!

xoxo
Ashley

Blogging..

Hey everyone --
I wanted y'all to know that I haven't forgotten about blogging... I've been really busy.

But you can find some of my blogs @ http://blog.msassociation.org for this month.
My blogs will be posted the week of October 22nd.

Just thought I'de let everyone know where to find them :)

xoxo
Ashley

(I think it's just wrong to still be 90 outside w/ mosquitos in October... Just sayin')

"How do you do it?"

“How do you do it?” A question I hear very often! In all honesty, I don’t know how to answer that question. If you don’t know “My Situation”… let me shed some light on it for you.

I was diagnosed two-years ago, August 2010, at the age of 22. I will be 25 in less than a month and it’s not been an easy journey, thus far…

I have two kids, both boys, ages 3 & 6. I have been married to my best friend for almost 7 years and I am a patient advocate for MS. From what I understand, I didn’t take me long to want to do something about my MS. I get confused by this statement at times, because what was expected…? Obviously I was upset and mad and scared and I still am. But am I supposed to stop living my life because of MS? I couldn’t just stop being a mom for my kids… to grieve with my diagnosis. My family and close friends know that I’m a very stubborn person, so I wasn’t just going to “lie down and take it”… so to say.

Since being diagnosed, I am now on my third DMD, Copaxone. I was diagnosed two-weeks after receiving my Associates Degree in Criminal Justice. The day before my interview at the county jail, I was diagnosed, actually. I’ve been denied Social Security numerous times (because I’m not blind and/or deaf from what the papers say). After my diagnosis I had decided to start back at school after a semester break, to work towards receiving my Bachelors in Criminal Justice. Well, I’ve stopped going to college since then… Not because I wanted to… but I was going to get “dropped” if I didn’t. I had started off at the University (that I did from home) in the honors program, and after one semester, I was barely passing getting very close to the “minimum” GPA.

I can honestly say, if it wasn’t for the support from my family and friends… I wouldn’t be doing anything. I’ve found ways to make things easier for myself around the house and with the kids… but that’s not even a “fix” a lot of the time. It’s the help I receive with the kids and the house, etc. that makes life easier.

When it comes to me having MS… it’s made me look at life differently and I have since changed my attitude on almost everything. I have “accepted” my diagnosis, but that doesn’t mean that I’m not still… angry, upset, depressed, confused… the list is endless.

How can someone completely “accept” his or her diagnosis of an illness, when there is so much unknown about it. They don’t know what causes MS, they don’t know how to stop the attacks and they don’t know how to cure it… Everyday you wake up, you honestly don’t know what to expect. I guess that’s the truth in everyone’s life… but I’m talking about simply getting out of bed. My first thoughts are, “What’s going to bother me the most today?? What’s going to hurt me the most today?? Will I need more help than normal??”

So while I’m mad… it’s like a confused mad, cause I don’t even ‘know’ what I’m mad at… Mad at my body for betraying me? Yeah… that’s a big one. Everyone is always worried about someone they love betraying them… but what if it’s your own body and no one has answers as to WHY! Yes, they know how it happens… but WHY? That’s the million-dollar question.

Then there are those statements, “Well, you did it yesterday, why can’t you today?” “You could walk yesterday.” “You were full of energy yesterday.” … Yeah .. well thanks for rubbing it in my face that my body can do whatever it wants when it wants to because I have MS… I’m not trying to be mean… I know that other people are clueless as to what those with MS have to REALLY go through… but sometimes it’s just like… I just don’t want to hear any comments… How about… “How are you doing today?”… “What’s in the news with MS?”… Things like that.

Yeah I know, people who have MS talk about it a lot… and it gets on some peoples nerves. Well this is for those “some people”… If you had or have a kid… would it be rude of me to think you talk about your kids too much? Yes… it would because kids are LIFE CHANGING. Just like an MS diagnosis, it’s LIFE CHANGING… except the fact that kids are a blessing and MS… well… it’s a pain in the you know what.

So in all reality, there is no explanation as to “How do I do it?” It’s “Why do I do it?” I’m not going to stop living my life because of MS… that’s just not who I am. Yes, I’ve had to change my life around… yes it keeps me from doing things… but what OTHER choice do I have? If I was letting MS take OVER my life… I would live in a place that is never too hot and never too cold & alone. Because the MS “triggers” are thought to be Extreme Heat, Extreme Cold and Extreme Stress. So obviously, Texas isn’t the best place for me… so I’m supposed to up and move away from my family and our established lives here? Yes, I can’t stand the heat… but you have to think reasonably.

If people looked closer, they would realized that in the summer time, I don’t leave the AC much… I’m not trying to be rude… I’m just trying not to end up in a wheelchair… again.

Think of me as a “used” battery… and those that are not sick, are a new battery, right out of the package every morning. We all know, that used batteries do not compare to the power (energy) of a NEW battery. So while those who are not sick, wake up refreshed and have enough energy to make it through the day doing “the simple tasks” of work, school, errands, kids, house work, etc. Yes they are tired when they get home, but they did it… they aren’t going to wake up tomorrow and be in excruciating pain from it. Well, those with MS (the used battery), wake up not full of energy, but completely exhausted, no matter how long they slept. Then we have to make it through the day, and we just have to be housewives, like myself, but it’s exhausting… if we had to push ourselves to do more than simple little things (like go to the grocery store), we know tomorrow our “battery level” will be lower and that will not make things run as smoothly… meaning our bodies will tell us, “Hey, you did too much yesterday, so you are going to pay for it for a day, a week, maybe more.” Does that make it easier to understand?

Do I push myself, knowing I will pay for it… sometimes but it’s usually worth it. To have that one-day where, I know I will get beat to hell by MS at some point, but at least I did what I wanted to do that one day and I had fun and I was “normal”. That doesn’t mean that my symptoms have gone away for that one day, there is no “on and off” switch. It just means that I pushed through my symptoms. Now if I was to “push my limits” everyday… that’s just plain crazy.

I don’t know what my future holds… I never knew I would be living with an incurable mystery disease… so I’m taking it day-by-day. I figure, I’ve already been complete wheel chair bound, had one side of my face paralyzed. Yes, I’ve lost vision, hearing and I’m weak on my right side, it’s never improved… there is no guarantee to “recover” from a flare. I’ve been to speech therapy, to help me talk “normal” again; I’ve been to occupational therapy, to help me find ways to be a “housewife” with my limitations; I’ve been to physical therapy to help me regain my strength and balance. Notice I used the word “help” and not “fix” … I can help myself improve my quality of life, but I cannot fix the damage that’s been done. So what I’ve been through in the past with exacerbations, it can happen again… I don’t necessarily have to have a “relapse” meaning; I don’t have to get a NEW lesion, to go through what I’ve been through before. If that lesion gets irritated and inflamed, I just might have to start all over again… and that’s something I have to live with everyday.

I choose to try and be as positive as I can, but even the strong break down. I usually let out my anger and frustrations when I’m alone… but that’s how I get it out of my system when I’m overwhelmed with the feeling. So, you might see me as ALWAYS positive and ALWAYS happy… I try to be around other people, because I don’t want other people to have to feel what I have to feel… to know what I have to go through everyday. By telling you all of this, you can get an “understanding” of what I personally go through, but you will never know.

Being a mother to two wonderful boys, a wife to an amazing husband, a loved one to my supportive family, a friend to my amazing friends and a patient advocate for all of those who live with MS, is “Why I do what I do…”

xoxo

Ashley  

MS has made me realize...

First off, I wanted to apologize that I haven't been blogging lately...
I've been busy with some things with MSWorld, the kids going back to school.... and my biggest time consumer... READING! I can't help it sometimes... I get in the mood to read... & I just can't stop. So.... let's see how I can update everyone on everything...

I "celebrated" my two-year MS diagnosis anniversary on 8/30 ... Very weird, looking back... seeing where I was then and where I am now. It wouldn't seem like a lot has changed about me but it has. I have a whole new outlook on life!

So, I titled this blog -- "MS has made me realize...", So, here it goes on how MS has changed me:
I no longer take things for granted... by saying that, it can mean a lot of things. When most people say they don't take something for granted... they are talking about... love, friendship, work, money, etc. When I say it, as I'm sure many other people with MS can relate, I do not take everyday for granted... I don't take the fact that I can walk for granted (not always well, but I still can), I don't take my family for granted, I don't take chewing solid food and swallowing it for granted ( as some of you might know, October 2010 I had a bad flare that paralyzed the right side of my face, and I couldn't eat solids... and I had problems swallowing)... I don't take for granted... holding a conversation...  at times I get stuck when I speak to someone... my brain has the words I need to say, but the connection from brain to mouth gets confused? maybe? & I just stop speaking for a bit...
The list could go on and on...

MS has made me realize, not to sweat the small stuff... and appreciate what I have in my life at present. Used to... I would be making sure that the "friends" I had here were still my friends and we were super close and did everything together.. when those "friends" ended our friendship, due to my diagnosis, I was upset, I can't lie about that... but now... look what life has given me. I have a best friend, that I haven't even MET face to face... but she is my best friend, regardless. We met at MSWorld.... and we complete each other, in a freaky connected way... I've learned from this.. friendship isn't about how much you "hand out" with the person, it's the connection you have... & the trust & love.

MS has made me realize... that Life is about love and joy, even in the ups and downs. I no longer strive to have my house spotless, sorry but I just don't have the energy to keep up with it 24/7... I have now become one of those.. "Oh crap, someone is coming over" kind of cleaning mechanism... lol

While not all people with MS can say this, or feel this... and I'm not sure if everyone ever will share these feelings...
MS, while it is a burden, it has helped me grow and found true happiness within my surroundings, so for that I'm thankful. While I am not "glad" that I got MS... I can say that I've accepted my diagnosis, and by doing so, I've grown and just feel like such a better person. I can't even in-vision what my life would be like right now had I never been diagnosed... never had MS all together. I have met the most amazing people from this MonSter of a disease... and for that I thank you MS.... odd to say I know.

I think that this is why when people give me that "I feel sorry for you look"... it doesn't bother me, because there is nothing to be sorry about.... I don't want or need pity... just the love and kindness and support... I haven't grown an extra limb due to MS... so I don't like seeing "the look" as if I have...

The bottom line is, I could be better.... I could be worse... with MS, you never know when something is going to happen... or what your going to feel like every morning when you wake up... But I have come to the conclusion, that MS has made realize, I'm not going to live in fear and wonder... of just the unknown. Anything can happen to anyone at anytime... this is why things that used to bother me, don't... I just don't care to involve myself in drama... or fighting... or anything that is unpleasant, because in all reality, my MS gives me "unpleasant" everyday... but I'm not going to let it control my behavior and actions.

I sometimes day dream, what if I could let some of the people around me, feel what I feel... for a short time frame... how would they feel? Pain wise... mainly... I've been dealing with it for so long, it's just a part of my everyday... & as my mother says, "I have a high pain tolerance, compared to the average person".... for instance, when they ask you on a scale from 1-10 how bad is the pain... and "average" person says 8.... I would say.. 4.. because of my pain tolerance... if that makes sense.

Well, I think that's enough rambling for one morning... :)

Until next time!

xoxo
Ashley!

MS isn't always to blame!

Well, I feel the title of this post says it all! Let me give you a run down as to why that is...

So last weekend I had really bad vertigo/dizziness and it was causing really bad migraines that were making me sick...

So I was taking it easy, called my neuro's office... Let them know about what was going on...

Well on Sunday I woke up with really bad lower back pain, which I just thought I slept wrong... & the fact that I woke up to Luke's feet in my back.

So I took some pain meds and it was feeling a bit better... During this time I'm still a bit "woozy" feeling. Monday I woke up with the same exact back pain... I'm like okay, so maybe the weather change we had caused my MS to just irritate me more than it already does.

Well, Tuesday my back pain was just ridiculous to where I just wanted to sleep so I didn't feel the pain. Then I started havin sharp stabbing pains... I was then asked if I needed to go to the hospital for it ( I was actually TOLD to go but I will leave my bossy bestie out of this lol )

So James took me to the hospital, they run their tests... Give me IV pain killer, which never worked... Finally came back with the diagnosis of a kidney infection.

So, that's what I've been dealing wit and that's what I mean about it's not always MS.

I was sitting here thinking that the weather change was just making my symptoms worse and not even contemplating that there was anything else causing the pain I was in.

So moral of the story, even though ER like to blame all of our misfortunes on our MS, it's not always the problem at hand. Now that I'm treating the kidney infection, I'm worried that my immune system is now trying to fight of the infection, and that it will start miss firing on to my nerves.

Hopefully I caught it soon and I won't suffer a relapse due to the kidney infection... Seeing as copaxone takes 6 months to be in "full" effect.

Speaking of copaxone, it's just the icing on the cake right now! I'm having the most irritating injection site reactions even a few days after I ha the shot in the certain injection area... I'm talking about the hard lump feeling and this uncontrollable itching... It seems that the Benadryl is helping, but it's still irritating and I can't be taking Benadryl all the time or else I'll be out for the count!

Alright, just wanted to give an update. Time for some shut eye!

Xoxo
Ashley