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. |
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