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
Tuesday, January 31, 2012
Friday, January 27, 2012
How I live with MS...
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
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
Thursday, January 26, 2012
Neuro Check-Up
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
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
Monday, January 23, 2012
Longest day ever!
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.
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.
Sunday, January 22, 2012
Weird Feeling
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
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
Friday, January 20, 2012
In a funk...
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
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
Wednesday, January 18, 2012
Stressed & Busy!
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
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
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| Cool picture I took in my front yard. |
Sunday, January 15, 2012
Hello Tysabri Energy!
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
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
Friday, January 13, 2012
First Tysabri Infusion
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
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
Wednesday, January 11, 2012
Nervous about tomorrow...
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
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
Monday, January 9, 2012
First Infusion SCHEDULED!
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
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.
This is sooooo tiring! Well, I'm exhausted... I'm going to take a nice bath & go to bed.
xoxoxo
Ashley
Friday, January 6, 2012
Too fatigued to move!
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
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
Wednesday, January 4, 2012
Sick & Tired of being Sick & Tired
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!
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!
Sunday, January 1, 2012
Happy New Year!!
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.
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.
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
 |
| Jason w/ his sparkler! |
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'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
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