Wednesday, May 22, 2013
My First MS Blog: I love my dogs, but....
My First MS Blog: I love my dogs, but....: So pet ownership has always been my thing. I have no kids by choice so my dogs and cats are my family. In fact I am a sucker for any animal ...
I love my dogs, but....
So pet ownership has always been my thing. I have no kids by choice so my dogs and cats are my family. In fact I am a sucker for any animal and would save them all if I could. My mom always said I should have a farm and just rescue animals. Actually if I ever won the lottery animal rescue support would be my #1 thing.
I have 2 and a 1/2 huskies. Daiys is 10, Gypsy is 1 and Jessie 9 (the 1/2- Daisys daughter mixed with a Springer Spaniel- don't ask lol) are my dogs. Then I also have 3 cats. Before the grand decision to get Gypsy, in hopes to keep the older dogs "young", traveling was not much of an issue. The older dogs don't mind laying around all day with minor human interaction or we would take them with us. With a puppy that all changes.
So where I am going with this is I could not live without my animals, but yesterday I realized how hard it is to travel with having 3. My fiance and I were planning a trip to my mom's (6 hrs away) for the long holiday weekend coming up. We had a plan. His daughter would come and dog sit and I would finally be able to go home for some family time that I only get maybe twice a year. I have not seen my mom since my diagnosis and quite frankly I am in need of some mom time!
Well I return home yesterday after an interesting evening shoe shopping (see yesterdays blog for a laugh) and my finace tells me that his daughter is going to the beach with friends and cannot dog sit. What to do? Stay home and bag the trip! Sad face and disappointment insert here. For a second we said "well we could pile them all in the car for a 6 hr ride!" NOT! The 2 older ones LOVE going to grandmas but there is no way Gypsy would be manageable for such a long ride, not to mention what she would do in my poor moms house! It would be more stress than worth it!
So, you may ask, why not go alone? Well I could but with the fatigue that I fight daily I am concerned about a 6 hr drive alone on a busy holiday weekend. My level of alertness really diminishes as the day goes on.
His daughter is really our only saving grace when it comes to dog sitting. In thinking about this moving forward I realize our days our numbered if not over. She is a Jr. in college and will be moving away after this summer. Will I ever get home again? I hope so but not really sure to be honest. My family does the best they can and come to my house about once a year, but it's so not enough sometimes.
So I am quite sad today as I ponder this. The only solution is for someone to actually live here while we are gone to take care of the animals. Its a big job! Just like kids I want to make sure they are safe and taken car of properly. And that Gypsy does not eat the house while we are gone!
So I will continue to think about this and see if a solution comes to me. I look over at their sweet faces right now and could not imagine life with out them, but MY family is also a need. Life is short. Anything can happen. There must be a solution.......
I have 2 and a 1/2 huskies. Daiys is 10, Gypsy is 1 and Jessie 9 (the 1/2- Daisys daughter mixed with a Springer Spaniel- don't ask lol) are my dogs. Then I also have 3 cats. Before the grand decision to get Gypsy, in hopes to keep the older dogs "young", traveling was not much of an issue. The older dogs don't mind laying around all day with minor human interaction or we would take them with us. With a puppy that all changes.
So where I am going with this is I could not live without my animals, but yesterday I realized how hard it is to travel with having 3. My fiance and I were planning a trip to my mom's (6 hrs away) for the long holiday weekend coming up. We had a plan. His daughter would come and dog sit and I would finally be able to go home for some family time that I only get maybe twice a year. I have not seen my mom since my diagnosis and quite frankly I am in need of some mom time!
Well I return home yesterday after an interesting evening shoe shopping (see yesterdays blog for a laugh) and my finace tells me that his daughter is going to the beach with friends and cannot dog sit. What to do? Stay home and bag the trip! Sad face and disappointment insert here. For a second we said "well we could pile them all in the car for a 6 hr ride!" NOT! The 2 older ones LOVE going to grandmas but there is no way Gypsy would be manageable for such a long ride, not to mention what she would do in my poor moms house! It would be more stress than worth it!
So, you may ask, why not go alone? Well I could but with the fatigue that I fight daily I am concerned about a 6 hr drive alone on a busy holiday weekend. My level of alertness really diminishes as the day goes on.
His daughter is really our only saving grace when it comes to dog sitting. In thinking about this moving forward I realize our days our numbered if not over. She is a Jr. in college and will be moving away after this summer. Will I ever get home again? I hope so but not really sure to be honest. My family does the best they can and come to my house about once a year, but it's so not enough sometimes.
So I am quite sad today as I ponder this. The only solution is for someone to actually live here while we are gone to take care of the animals. Its a big job! Just like kids I want to make sure they are safe and taken car of properly. And that Gypsy does not eat the house while we are gone!
So I will continue to think about this and see if a solution comes to me. I look over at their sweet faces right now and could not imagine life with out them, but MY family is also a need. Life is short. Anything can happen. There must be a solution.......
Tuesday, May 21, 2013
My First MS Blog: Excuse me....this may sound weird.....
My First MS Blog: Excuse me....this may sound weird.....: Ok so the highlight of my day began (at the end of my day) with those exact words. Let me explain. After work today I went on a mission to...
Excuse me....this may sound weird.....
Ok so the highlight of my day began (at the end of my day) with those exact words. Let me explain.
After work today I went on a mission to find some sandals for summer. I won't get into why I need more shoes, but I was desperate. I got rid of most of mine after last year blah, blah, blah...Annnnyyywayyyy.
So, I go to the mall to hit up Macy's. A little note about our mall, it is very desolate and run down so it is not a populated place most times. I walk in the front doors and happen to notice a nice looking younger man walking out. Just as you would notice anyone passing you in public, nothing to make note of. No eye contact, no smiles, just I happened to noctie someone walking out the door next to me as I was walking in. Happens all the time.
So I walk into Macy's and immediatly begin looking at the clothes which is NOT why I went there, but anyway....I am browsing the dresses and hear "Excuse me", I look up and this very attractive man is standing in front of me. YES, the one who was walking out as I was walking in. So I look up and he proceeds to say "I know this may sound weird but I was wondeing if I could have your number and give you al call sometime." AAAWWWW! So I politely say (gushing I am sure because, aaww how flattering) "well thank you but I am sorry to say that I am married." So I am smiling and I thank him for the offer. But yet this young buck does not give up that easy, due to my striking beauty (lol) and proceeds to say "Well maybe we could just go for drinks as friends." Again..aaawww! So I say "well I am really sorry but I am married so I don't think so, but thank you again for asking." We smile, I giggle and he kindly walks away. Poor guy!
So after this I feel so good! Mind you, this man had to be at most 26 years old, good looking, polite and if I was avaliable I would have considered it based on first glance. After deeper conversation I probably would have found out he is jobless, lives with his parents and has a 2 year old kid, and plays video games like it is his job, but luckly I did not have to go there. But what really made me laugh is I am 37 yers old dude! Bless his heart for thinking I was his age. (I do think I don't look a day past 30 if I do say so myself, lol). And to think that I was so striking that he had to come back into that mall and follow me to Macy's! Now for those of you who know me know I say this very toung as cheek as I come down from my high of being asked out by a complete stranger!
So it made my day! It's nice to be noticed by others! And I did tell a white lie as I am not really married by law! But why get into a big story of fiances, dogs, house etc! Don't want to bore the guy to death!
The bigger issues is, did I find my shoes! Well not at Macy's! Not a Kohl's! Not at DSW! But at the last stop- Marshalls! I'm all set now. So if anything this little flattery got me through multiple stores and 2 hrs of dreadful shopping.
I hope he finds a nice girl! Poor guy! Hey, that takes guts!
After work today I went on a mission to find some sandals for summer. I won't get into why I need more shoes, but I was desperate. I got rid of most of mine after last year blah, blah, blah...Annnnyyywayyyy.
So, I go to the mall to hit up Macy's. A little note about our mall, it is very desolate and run down so it is not a populated place most times. I walk in the front doors and happen to notice a nice looking younger man walking out. Just as you would notice anyone passing you in public, nothing to make note of. No eye contact, no smiles, just I happened to noctie someone walking out the door next to me as I was walking in. Happens all the time.
So I walk into Macy's and immediatly begin looking at the clothes which is NOT why I went there, but anyway....I am browsing the dresses and hear "Excuse me", I look up and this very attractive man is standing in front of me. YES, the one who was walking out as I was walking in. So I look up and he proceeds to say "I know this may sound weird but I was wondeing if I could have your number and give you al call sometime." AAAWWWW! So I politely say (gushing I am sure because, aaww how flattering) "well thank you but I am sorry to say that I am married." So I am smiling and I thank him for the offer. But yet this young buck does not give up that easy, due to my striking beauty (lol) and proceeds to say "Well maybe we could just go for drinks as friends." Again..aaawww! So I say "well I am really sorry but I am married so I don't think so, but thank you again for asking." We smile, I giggle and he kindly walks away. Poor guy!
So after this I feel so good! Mind you, this man had to be at most 26 years old, good looking, polite and if I was avaliable I would have considered it based on first glance. After deeper conversation I probably would have found out he is jobless, lives with his parents and has a 2 year old kid, and plays video games like it is his job, but luckly I did not have to go there. But what really made me laugh is I am 37 yers old dude! Bless his heart for thinking I was his age. (I do think I don't look a day past 30 if I do say so myself, lol). And to think that I was so striking that he had to come back into that mall and follow me to Macy's! Now for those of you who know me know I say this very toung as cheek as I come down from my high of being asked out by a complete stranger!
So it made my day! It's nice to be noticed by others! And I did tell a white lie as I am not really married by law! But why get into a big story of fiances, dogs, house etc! Don't want to bore the guy to death!
The bigger issues is, did I find my shoes! Well not at Macy's! Not a Kohl's! Not at DSW! But at the last stop- Marshalls! I'm all set now. So if anything this little flattery got me through multiple stores and 2 hrs of dreadful shopping.
I hope he finds a nice girl! Poor guy! Hey, that takes guts!
Monday, May 20, 2013
My First MS Blog: ANNNDD it's Monday again.....
My First MS Blog: ANNNDD it's Monday again.....: Ok, so I did not complete my weekend list as I had hoped. But I did get a lot of it completed so I am pretty proud of that. Saturday I had a...
ANNNDD it's Monday again.....
Ok, so I did not complete my weekend list as I had hoped. But I did get a lot of it completed so I am pretty proud of that. Saturday I had a burst of energy and then Sunday not so much, I took a long nap. Oh well! :)
Today I FINALLY received the Nuvigil 250 in the mail from my doc. It only took them a week to send me my samples as I am slowly falling into a fatigue coma! Today was much of the same as I it the wall by 1:30pm. So tomorrow I will take the higher dose and see if it helps! Fingers crossed!
Sunday I was a bit unnerved as I was getting some unusual tingeling and numbness in my left leg and hand. It lasted a few hours but when I woke up today it was gone. So crisis averted! If it lasts, that is when you know you have a problem.
Well it was shot time a little bit ago so I will wait for that to settle in and get comfy for the rest of the night and relax!
Today I FINALLY received the Nuvigil 250 in the mail from my doc. It only took them a week to send me my samples as I am slowly falling into a fatigue coma! Today was much of the same as I it the wall by 1:30pm. So tomorrow I will take the higher dose and see if it helps! Fingers crossed!
Sunday I was a bit unnerved as I was getting some unusual tingeling and numbness in my left leg and hand. It lasted a few hours but when I woke up today it was gone. So crisis averted! If it lasts, that is when you know you have a problem.
Well it was shot time a little bit ago so I will wait for that to settle in and get comfy for the rest of the night and relax!
Friday, May 17, 2013
My First MS Blog: TGIF....I Hope
My First MS Blog: TGIF....I Hope: So the sun is shining, the weather is warm and I am loving it! But once again there is this sneaky little condition called MS. I vow it will...
TGIF....I Hope
So the sun is shining, the weather is warm and I am loving it! But once again there is this sneaky little condition called MS. I vow it will not get the best of me, but the reality is if I cannot tame this fatigue I wil sleep right through it all!
As always it was a long week at work, eveyone can agree to that. But for me I left around 3:30 today to come home and take a 3 hour nap because I literally could not function! Not one more step, not one more thought, not one more decision. If I could have, I would have laid down in the hallway floor at work to rest! I was at the point of collapsing and I am not exagerating!
I live about 8 miles from work (yes I am so lucky), and thank God I do. I was actually driving home white knuckled to the steering wheel thinking "I'm gonna make it, I'm gonna make it, only a few more lights and I will be home...so on and so on." Once I made it was so relieved. I kicked off my shoes and hit the sack! What a GREAT way to spend the afternoon in this perfect weather! Yes I am being sarcastic! It pisses me off!
So here are my goal for the weekend: grocery shopping, a walk both days, clean the house, cook, and wash m car. It gives me anxiety just to think about it because I know all of those things may not happen. Each day I think to mysef, just one more good nights sleep and I will be golden tomorrow. That is once again my mantra for tonight!
As always it was a long week at work, eveyone can agree to that. But for me I left around 3:30 today to come home and take a 3 hour nap because I literally could not function! Not one more step, not one more thought, not one more decision. If I could have, I would have laid down in the hallway floor at work to rest! I was at the point of collapsing and I am not exagerating!
I live about 8 miles from work (yes I am so lucky), and thank God I do. I was actually driving home white knuckled to the steering wheel thinking "I'm gonna make it, I'm gonna make it, only a few more lights and I will be home...so on and so on." Once I made it was so relieved. I kicked off my shoes and hit the sack! What a GREAT way to spend the afternoon in this perfect weather! Yes I am being sarcastic! It pisses me off!
So here are my goal for the weekend: grocery shopping, a walk both days, clean the house, cook, and wash m car. It gives me anxiety just to think about it because I know all of those things may not happen. Each day I think to mysef, just one more good nights sleep and I will be golden tomorrow. That is once again my mantra for tonight!
Tuesday, May 14, 2013
My First MS Blog: Nuvigil #2 and other news
My First MS Blog: Nuvigil #2 and other news: Ok so this med is not working for me! Sigh... So they are upping the dose to see if that will make a difference...so to be continued..... ...
Nuvigil #2 and other news
Ok so this med is not working for me! Sigh... So they are upping the dose to see if that will make a difference...so to be continued.....
So since my diagnosis I started following some different blogs as well reading others personal perspective of their own trials on MS groups. Reading these gave me the idea to do this blog for myself. I have to say it helps. It is the diary I know I would never do using pen and paper! How sad is it that picking up a pen and paper is now outdated and too much effort lol. Anyway, a few good points I have read recently that certainly apply to me and some random thoughts:
1. I am so aware of my body that I get on my own nerves..seriously. Every tingle, increasing fatigue, vision blip causes me to be concerned if it is something to worry about or if it is just normal, a fluke. It is very frusturating to live this way but there seems no way around it.
2. I dislike the office staff at my neurologists! But I love my Dr! So I am staying, but geeze you would think they would be kind and have comapssion considering what their patients are going through. The PA actually said to me "whats up" when I called to tell her about the med that is not working! Really- "whats up"! I'll tell you whats up, I have MS and am trying to manage my symptoms and need your help thats whats up! If she could only walk a day in my shoes where I feel like I have to peel my eyelids open to remain upright. So that's "whats up" lady. I could go on but I will spare you...
3. Cognitive issues are a problem! Right now I can not remember what my #3 was actually going to be, but I know it was a good one! It will come to me... maybe
4. I hate that my nail polish chips the day after I paint my nails....just threw that in there because it really bothers me...
5. Social support from other is so important! I am still working on this one. Planning a possible trip to see my family which will help me a lot!
6. The shots are getting to me. The skin reactions are painful and irritating! When will that end.....um never! Unless I am lucky enough to go on an oral med someday.
7. I am glad I have been diagnosed, but pissed that I could have been on treatment 15 years ago! What were those doctors thinking? The older you are when you are diagnosed the more progressed your disease. Yeah me!
So hopefully if anyone else is reading this they can relate to some of it. At the very least it helps me to write it down! I have a lot to be thankful for and a lot to still figure out an learn. One day at a time people, one day at a time!
So since my diagnosis I started following some different blogs as well reading others personal perspective of their own trials on MS groups. Reading these gave me the idea to do this blog for myself. I have to say it helps. It is the diary I know I would never do using pen and paper! How sad is it that picking up a pen and paper is now outdated and too much effort lol. Anyway, a few good points I have read recently that certainly apply to me and some random thoughts:
1. I am so aware of my body that I get on my own nerves..seriously. Every tingle, increasing fatigue, vision blip causes me to be concerned if it is something to worry about or if it is just normal, a fluke. It is very frusturating to live this way but there seems no way around it.
2. I dislike the office staff at my neurologists! But I love my Dr! So I am staying, but geeze you would think they would be kind and have comapssion considering what their patients are going through. The PA actually said to me "whats up" when I called to tell her about the med that is not working! Really- "whats up"! I'll tell you whats up, I have MS and am trying to manage my symptoms and need your help thats whats up! If she could only walk a day in my shoes where I feel like I have to peel my eyelids open to remain upright. So that's "whats up" lady. I could go on but I will spare you...
3. Cognitive issues are a problem! Right now I can not remember what my #3 was actually going to be, but I know it was a good one! It will come to me... maybe
4. I hate that my nail polish chips the day after I paint my nails....just threw that in there because it really bothers me...
5. Social support from other is so important! I am still working on this one. Planning a possible trip to see my family which will help me a lot!
6. The shots are getting to me. The skin reactions are painful and irritating! When will that end.....um never! Unless I am lucky enough to go on an oral med someday.
7. I am glad I have been diagnosed, but pissed that I could have been on treatment 15 years ago! What were those doctors thinking? The older you are when you are diagnosed the more progressed your disease. Yeah me!
So hopefully if anyone else is reading this they can relate to some of it. At the very least it helps me to write it down! I have a lot to be thankful for and a lot to still figure out an learn. One day at a time people, one day at a time!
Monday, May 13, 2013
My First MS Blog: Nuvigil..not so much
My First MS Blog: Nuvigil..not so much: So last week I broke down and called my neuo for a script for something to help with my extreme fatigue. He sent me some samples of Nuvigil....
My First MS Blog: My First MS Blog: Fatigue
My First MS Blog: My First MS Blog: Fatigue: My First MS Blog: Fatigue : Ok so let me explain, MS fatigue is not the same as being tired from not getting enough sleep. Today was a strug...
Nuvigil..not so much
So last week I broke down and called my neuo for a script for something to help with my extreme fatigue. He sent me some samples of Nuvigil. I guess it is a commenly perscribed med for people with MS who have fatigue issues.
So today was my first go round with taking the med....and .....nothing! I still felt tired and exhaused all day! So now what? Wel I guess I will continue to take it this week to see if today was a fluke and then call back for another solution. Sigh.....
On a brighter note I had a great talk with a girl at work who also has MS. I feel so relieved that I have someone I know who I am able to bounce things off of. I was initially asking her about fatigue and this med to see if she had any solutions.
It's very had to find support. I don't mean support in terms of websites or the MS society etc. I mean finding someone who can relate and who you can learn from. Like one of my questions today was "how do you know when you are having a relapse". Seriously, how do you know? That is something I have yet to figure out. Am I having on now because I am so tired? I dont know! There is so much to figure out. Other blogs and websites do help, but sometimes you feel so isolated as if no one understands, and I guess how can they if they don't have MS or know much about it.
One thing I have really been missing is my family. I live really far away from any family support, short of weekly phone calls. And when I speak to my family I certainly don't want to blabber on about my illness. There is more to life to talk about. But I do miss the ability to pop over to moms or stop by my brothers. Sometimes you just need your mom! Maybe a vacation home is in order, however I am positive I would never make the long drive these days in fear of falling asleep or not being alert as I should be. Nuvigil can kick in any time now.....
So today was my first go round with taking the med....and .....nothing! I still felt tired and exhaused all day! So now what? Wel I guess I will continue to take it this week to see if today was a fluke and then call back for another solution. Sigh.....
On a brighter note I had a great talk with a girl at work who also has MS. I feel so relieved that I have someone I know who I am able to bounce things off of. I was initially asking her about fatigue and this med to see if she had any solutions.
It's very had to find support. I don't mean support in terms of websites or the MS society etc. I mean finding someone who can relate and who you can learn from. Like one of my questions today was "how do you know when you are having a relapse". Seriously, how do you know? That is something I have yet to figure out. Am I having on now because I am so tired? I dont know! There is so much to figure out. Other blogs and websites do help, but sometimes you feel so isolated as if no one understands, and I guess how can they if they don't have MS or know much about it.
One thing I have really been missing is my family. I live really far away from any family support, short of weekly phone calls. And when I speak to my family I certainly don't want to blabber on about my illness. There is more to life to talk about. But I do miss the ability to pop over to moms or stop by my brothers. Sometimes you just need your mom! Maybe a vacation home is in order, however I am positive I would never make the long drive these days in fear of falling asleep or not being alert as I should be. Nuvigil can kick in any time now.....
Thursday, May 9, 2013
My First MS Blog: Fatigue
My First MS Blog: Fatigue: Ok so let me explain, MS fatigue is not the same as being tired from not getting enough sleep. Today was a struggle let me tell you! I final...
Fatigue
Ok so let me explain, MS fatigue is not the same as being tired from not getting enough sleep. Today was a struggle let me tell you! I finally broke down and called my dr. for a script for medication to assist with the extreme fatigue. I hate the thought of taking another medication, but weighing that against a losing battle of complete exhaustion I have no other choice.
It's funny because my dr. has mentioned in the past how important it is to stay active and get enough exercise. I love to walk on my trail, but right now I can hardly walk down the hall, lol. So yes Dr., exercise sounds great, but I am so exhausted I can barely stand upright!
I was speaking to a friend of mine today and she was very smpathetic to my struggle. She likened my fatigue to that of having a newborn where you are so delierious with fatigue you don't know if you are coming and going. Now I have never experienced having children but that does seem like a good comaprison. I am delieriously exhaused so therfore my balance is off, I can't think straight and at times I just feel like crying because I am beside myself. So yes that is how I have seen many of my friends who have newborns! It may be very similar. Maybe I should carry a baby doll around with me to make me feel like I am tired for a reason! lol
The interesting thing is I am now learning from my body when I am going to have days like these because I wake up like this. I wake up exhausted not just tired and its hard to move and think. So these are the days when hopefully this medication will help to give me a boost!
The days are longer, the sun is shining, my sandels are ready to be worn and I just want to have some spunk! I guess it always could be worse! Now time to rest up!
It's funny because my dr. has mentioned in the past how important it is to stay active and get enough exercise. I love to walk on my trail, but right now I can hardly walk down the hall, lol. So yes Dr., exercise sounds great, but I am so exhausted I can barely stand upright!
I was speaking to a friend of mine today and she was very smpathetic to my struggle. She likened my fatigue to that of having a newborn where you are so delierious with fatigue you don't know if you are coming and going. Now I have never experienced having children but that does seem like a good comaprison. I am delieriously exhaused so therfore my balance is off, I can't think straight and at times I just feel like crying because I am beside myself. So yes that is how I have seen many of my friends who have newborns! It may be very similar. Maybe I should carry a baby doll around with me to make me feel like I am tired for a reason! lol
The interesting thing is I am now learning from my body when I am going to have days like these because I wake up like this. I wake up exhausted not just tired and its hard to move and think. So these are the days when hopefully this medication will help to give me a boost!
The days are longer, the sun is shining, my sandels are ready to be worn and I just want to have some spunk! I guess it always could be worse! Now time to rest up!
Wednesday, May 8, 2013
My First MS Blog: It's Wednesday...Where have I been!
My First MS Blog: It's Wednesday...Where have I been!: Well, I have actually been busy! This past weekend was beautiful and I made it a point to enjoy it! A long walk on Saturday followed by a fu...
It's Wednesday...Where have I been!
Well, I have actually been busy! This past weekend was beautiful and I made it a point to enjoy it! A long walk on Saturday followed by a fundraiser for the March of Dimes where I got to see some dear friends. Then Sunday was dog day! Took all 3 girls to the dog park for a run and some socialization. That is always a sight and an adventure. Monsters!
By Monday I was exhausted, Tuesday had a hair appt and today I am relaxing.
I know all of this is so facinating! lol. But I actually feel pretty "normal". The fatigue is always right on the surface of everthing I do which is a bummer. I am always concerned that increasing fatigue is a sign of a flare up. We will see.
One of my favorite things is to take long walks on a trail by my home. It is about 4 miles I would say and takes me about an hour and fifteen minutes to finish. I did go out Saturday while it was still pretty cool in the day. On the way back, probably 15 minutes left, I noticed my inner thighs were going numb! I have never experienced this before. But I refused to sit down and take a break I pushed through and with some rest it went away. I am not sure if that was the smartest thing but it was definitly a result of my being so stubborn!
On Sunday I noticed that the heat of the day was too much. Now taking the three girls out is no small feat! But it was hot and I did not have the energy to walk them after we let them play for about a half hour in the park. Bummer.
All of this just means that need to budget my energy better and be more aware of what my body is telling me. This is all a learning process. That is the upsetting part of this disease, you have to budget your energy! yuck! But again I am very fortunate that I am still able to do what I want! I remind myself daily that things could be much worse, so what that I am tired more!
My neuro suggested some medication to assist with the fatigue. I am holding off for now but I am not sure how much longer. I am contemplating trying it to see if it make a difference. As with any medication there are side effects- this one being insomina! Gee from one extreme to the next!
Tonight I am looking forward to watching some TV and spending time with my family! Night all.....:)
By Monday I was exhausted, Tuesday had a hair appt and today I am relaxing.
I know all of this is so facinating! lol. But I actually feel pretty "normal". The fatigue is always right on the surface of everthing I do which is a bummer. I am always concerned that increasing fatigue is a sign of a flare up. We will see.
One of my favorite things is to take long walks on a trail by my home. It is about 4 miles I would say and takes me about an hour and fifteen minutes to finish. I did go out Saturday while it was still pretty cool in the day. On the way back, probably 15 minutes left, I noticed my inner thighs were going numb! I have never experienced this before. But I refused to sit down and take a break I pushed through and with some rest it went away. I am not sure if that was the smartest thing but it was definitly a result of my being so stubborn!
On Sunday I noticed that the heat of the day was too much. Now taking the three girls out is no small feat! But it was hot and I did not have the energy to walk them after we let them play for about a half hour in the park. Bummer.
All of this just means that need to budget my energy better and be more aware of what my body is telling me. This is all a learning process. That is the upsetting part of this disease, you have to budget your energy! yuck! But again I am very fortunate that I am still able to do what I want! I remind myself daily that things could be much worse, so what that I am tired more!
My neuro suggested some medication to assist with the fatigue. I am holding off for now but I am not sure how much longer. I am contemplating trying it to see if it make a difference. As with any medication there are side effects- this one being insomina! Gee from one extreme to the next!
Tonight I am looking forward to watching some TV and spending time with my family! Night all.....:)
Friday, May 3, 2013
My First MS Blog: Friday Fun
My First MS Blog: Friday Fun: TGIF! What a long week, but I think I say that every week. Finally feeling better from this horrible cold. Just a few sniffles and coughs le...
Friday Fun
TGIF! What a long week, but I think I say that every week. Finally feeling better from this horrible cold. Just a few sniffles and coughs left!
So after work today was a girls evening out, impromptu. A co- worker and myself went for mani-pedis and it was a nice treat. I reminded me how important it is to relax, enjoy friends, have a laugh and treat yourself. So muh time has been spent lately feeling sick that it was nice.
So everyone at work has such nice tans, including my co-worker friend. So after the mani-pedi she drug me along to go tanning. Now this is something I have only done one other time in my life, but what the heck. I have always been a sun worshiper and in the back of my mind think about the dangers of tanning, but what the heck! lol. It will be nice to have some base color and feel alive. To some this may sound sad that having a tan brings joy, but I have to say I always feel better with a little color. You only live once I guess.
All this weekend it is supposed to be warm and sunny and I am looking forward to some long walks, relaxing, and going to a friend fundraiser this weekend! I better rest up!
:)
So after work today was a girls evening out, impromptu. A co- worker and myself went for mani-pedis and it was a nice treat. I reminded me how important it is to relax, enjoy friends, have a laugh and treat yourself. So muh time has been spent lately feeling sick that it was nice.
So everyone at work has such nice tans, including my co-worker friend. So after the mani-pedi she drug me along to go tanning. Now this is something I have only done one other time in my life, but what the heck. I have always been a sun worshiper and in the back of my mind think about the dangers of tanning, but what the heck! lol. It will be nice to have some base color and feel alive. To some this may sound sad that having a tan brings joy, but I have to say I always feel better with a little color. You only live once I guess.
All this weekend it is supposed to be warm and sunny and I am looking forward to some long walks, relaxing, and going to a friend fundraiser this weekend! I better rest up!
:)
Tuesday, April 30, 2013
My First MS Blog: Sick of Being Sick
My First MS Blog: Sick of Being Sick: So I have not been doing much of anthing lately but trying to get over this horrible bronchitis and get through each day as best as I can. I...
Sick of Being Sick
So I have not been doing much of anthing lately but trying to get over this horrible bronchitis and get through each day as best as I can. I can definitly say that being so sick has definitly made my MS symptoms more noticable to me. Everyone can see and hear me hacking and coughing and blowing my nose but what no one else can see is the dizzziness, the tingeling, headaches, vision issues and the FATIGUE! Again the cold on top of the MS has made the fatigue double. Not fun.
So what have I been thinking about lately? I have been thinking about how pissed I am! I mean really, is it too much to ask to feel well, get better fast, only suffer with the symptoms of a cold and not all of this other stuff? I spend my fee time "resting" even though I would rather be outside in the beautiful weather or have the energy to do the things I want to do.
Work for instance is something I enjoy 99% of the time. I love my job. Reall I do and I know how lucky I am to be aboe to say that! But wow has it been a struggle lately. I missed 3 days over this cold that has hit me like a mac truck. I have been back for a week or more now but I am struggling! I just want to go back to bed. Not because I am lazy but because I am so run down! I have no answer for this other than to express that this is hard! I am angry to spend my precious vacation days home sick! I am angry that I feel so crappy that the things that normally bring me joy are exhausting. I am angry that people keep telling me I look better when I really feel awful. No one wants to be that person who says "well thanks but I really feel like shit, let me tell you about all of my issues combined." So I smile and say "yea I'm getting better, thanks." Meanwhile my body is struggling to move and concentrate. I am sick, tired, and in between all of this I am taking my shots and smiling to keep up appearances. I can't be a total debbie downer all of the time, so I try and cope. I hide it, from everyone. So I am taking it out tonight in my words on here!
I am not going to apologize for complaining because this is what MS looks like sometimes! This is what MS feels like sometimes! I don't like it, in fact I hate it! I want to feel better. I want this lingering cold to go away and my MS to calm down! Is that too much to ask? Oh were the days when I could just nurse my cold and feel better in a few days.
Just today as I was at work I really thought about how great it would be if I were able to just be off- not work- take care of myself. Of course this is not a reality and is not what I want but where do you draw the line of living and taking care of yourself vs. struggling to do things you have to regardless of how it affects your quality of life. It is not the work or "working", it is the thought of what is more important. When you feel like crap you should not have to spend the little energy you have getting through the day just because that is what you are supposed to do. But that is life.
Today I was told a story by a friend of mine who has- had- a friend who just retired at age 52. She had cancer and she and her husband just 2 weeks ago bought a house in Florida to retire to. The wanted to spend their retirment years enjoing life. After all they are young. Well just today that woman passed away after an oddity with her cancer- died suddenly! So as I listen to this story I mentally think about what is more important. Do you suffer though work and the have to's of life just because you are supposed to? I guess the answer is yes, but that really stinks.
I don't know if I am making much, if any, sense. The past few days have been "bad days". Sick of being sick. Waiting to feel better. There is nothing worse that waiting for something you are not sure if you are ever going to get. I go to bed each night hoping that tomorrow will be better. I will do the same tonight.
Just as it is one of those days it is one of those blogs!
:)
So what have I been thinking about lately? I have been thinking about how pissed I am! I mean really, is it too much to ask to feel well, get better fast, only suffer with the symptoms of a cold and not all of this other stuff? I spend my fee time "resting" even though I would rather be outside in the beautiful weather or have the energy to do the things I want to do.
Work for instance is something I enjoy 99% of the time. I love my job. Reall I do and I know how lucky I am to be aboe to say that! But wow has it been a struggle lately. I missed 3 days over this cold that has hit me like a mac truck. I have been back for a week or more now but I am struggling! I just want to go back to bed. Not because I am lazy but because I am so run down! I have no answer for this other than to express that this is hard! I am angry to spend my precious vacation days home sick! I am angry that I feel so crappy that the things that normally bring me joy are exhausting. I am angry that people keep telling me I look better when I really feel awful. No one wants to be that person who says "well thanks but I really feel like shit, let me tell you about all of my issues combined." So I smile and say "yea I'm getting better, thanks." Meanwhile my body is struggling to move and concentrate. I am sick, tired, and in between all of this I am taking my shots and smiling to keep up appearances. I can't be a total debbie downer all of the time, so I try and cope. I hide it, from everyone. So I am taking it out tonight in my words on here!
I am not going to apologize for complaining because this is what MS looks like sometimes! This is what MS feels like sometimes! I don't like it, in fact I hate it! I want to feel better. I want this lingering cold to go away and my MS to calm down! Is that too much to ask? Oh were the days when I could just nurse my cold and feel better in a few days.
Just today as I was at work I really thought about how great it would be if I were able to just be off- not work- take care of myself. Of course this is not a reality and is not what I want but where do you draw the line of living and taking care of yourself vs. struggling to do things you have to regardless of how it affects your quality of life. It is not the work or "working", it is the thought of what is more important. When you feel like crap you should not have to spend the little energy you have getting through the day just because that is what you are supposed to do. But that is life.
Today I was told a story by a friend of mine who has- had- a friend who just retired at age 52. She had cancer and she and her husband just 2 weeks ago bought a house in Florida to retire to. The wanted to spend their retirment years enjoing life. After all they are young. Well just today that woman passed away after an oddity with her cancer- died suddenly! So as I listen to this story I mentally think about what is more important. Do you suffer though work and the have to's of life just because you are supposed to? I guess the answer is yes, but that really stinks.
I don't know if I am making much, if any, sense. The past few days have been "bad days". Sick of being sick. Waiting to feel better. There is nothing worse that waiting for something you are not sure if you are ever going to get. I go to bed each night hoping that tomorrow will be better. I will do the same tonight.
Just as it is one of those days it is one of those blogs!
:)
Friday, April 26, 2013
My First MS Blog: My First MS Blog: MS Is Eveywhere Now....
My First MS Blog: My First MS Blog: MS Is Eveywhere Now....: My First MS Blog: MS Is Eveywhere Now.... : Since my diagnosis in February 2013 MS is showing up eveywhere. let me explain... Before my d...
Monday, April 22, 2013
My First MS Blog: MS Is Eveywhere Now....
My First MS Blog: MS Is Eveywhere Now....: Since my diagnosis in February 2013 MS is showing up eveywhere. let me explain... Before my diagnosis I was aware of this disease. It has...
MS Is Eveywhere Now....
Since my diagnosis in February 2013 MS is showing up eveywhere.
let me explain...
Before my diagnosis I was aware of this disease. It has been mentioned to me several times over the past 10 years by my MD's but somehow the diagnosis evaded me, right or wrong. But now that I am "official" I can't get away from seeing and hearing about it everywhere without looking for it. Example: we all just learned about the passing of Annette Funicello (spelling?), so that grabbed my attention as I watched over and over of her decline. I became glued to the TV watching and contimplating if that would be my fate one day. Will I be unrecignizabe in a wheelchair someday? God I hope not! Then there was the week in March that is National MS week. So on with the week long info sessions on that. But I am glad to have a time of year when MS is celebrated with charity events etc. Then today I am watcing Dr. Oz and out of the blue they are talking about some random diet and the one woman stated she is on this diet because of her diagnosis of MS! What?! MS is everywhere.
My point is, isn't it funny when something like this happens to you that you see it everywhere, where as before you would have never noticed. It is just another reminder that I have MS and I will forever notice every mention of it. Has this happened to any of you, whether you have MS or some other thing that makes you more aware and you see it everywhere?
On another note, I spent half the day at the PCP getting my antibiotic, inhaler, and cough syrup for my inherited bronchitis. Please know that my co-worker is now feeling much better! lol! I am a bit bitter about this, I must get over it! I actually threatend to cough on her today as we were joking about it...little did she know I s not kidding! Again, I need to get over this! lol
So I am trying to rest and get better. I go and see my neurologist tomorrow and have some quetions for him now that I have been able to process this new diagnosis. Then I also have the home health RN's second visit tomorrow. I guess just to check in that I am doing ok with my injections. For the most part I am. But let me just tell you the 44mcg dose burns like hell! I need to discuss this with her as injecting my legs is almost unbearale! We shall see what she says. What was once something I didn't mind doing has not become something dreaded because I know it is going to hurt like hell. This makes it difficult when you know you have to do this for the rest of your life!
Anyway, I hope all who reads this blog is well and is enjoying this nice weather! I hope to be feeling better soon! :)
let me explain...
Before my diagnosis I was aware of this disease. It has been mentioned to me several times over the past 10 years by my MD's but somehow the diagnosis evaded me, right or wrong. But now that I am "official" I can't get away from seeing and hearing about it everywhere without looking for it. Example: we all just learned about the passing of Annette Funicello (spelling?), so that grabbed my attention as I watched over and over of her decline. I became glued to the TV watching and contimplating if that would be my fate one day. Will I be unrecignizabe in a wheelchair someday? God I hope not! Then there was the week in March that is National MS week. So on with the week long info sessions on that. But I am glad to have a time of year when MS is celebrated with charity events etc. Then today I am watcing Dr. Oz and out of the blue they are talking about some random diet and the one woman stated she is on this diet because of her diagnosis of MS! What?! MS is everywhere.
My point is, isn't it funny when something like this happens to you that you see it everywhere, where as before you would have never noticed. It is just another reminder that I have MS and I will forever notice every mention of it. Has this happened to any of you, whether you have MS or some other thing that makes you more aware and you see it everywhere?
On another note, I spent half the day at the PCP getting my antibiotic, inhaler, and cough syrup for my inherited bronchitis. Please know that my co-worker is now feeling much better! lol! I am a bit bitter about this, I must get over it! I actually threatend to cough on her today as we were joking about it...little did she know I s not kidding! Again, I need to get over this! lol
So I am trying to rest and get better. I go and see my neurologist tomorrow and have some quetions for him now that I have been able to process this new diagnosis. Then I also have the home health RN's second visit tomorrow. I guess just to check in that I am doing ok with my injections. For the most part I am. But let me just tell you the 44mcg dose burns like hell! I need to discuss this with her as injecting my legs is almost unbearale! We shall see what she says. What was once something I didn't mind doing has not become something dreaded because I know it is going to hurt like hell. This makes it difficult when you know you have to do this for the rest of your life!
Anyway, I hope all who reads this blog is well and is enjoying this nice weather! I hope to be feeling better soon! :)
Saturday, April 20, 2013
My First MS Blog: I Refuse to Feel Guilty...
My First MS Blog: I Refuse to Feel Guilty...: Well I can refuse, but I still feel guilty. Why you ask? Because the fatigue of MS plus my new head cold has caused me to spend the entire d...
I Refuse to Feel Guilty...
Well I can refuse, but I still feel guilty. Why you ask? Because the fatigue of MS plus my new head cold has caused me to spend the entire day in bed sleeping!
MS fatigue is terrible and indescribable, but I will try. It is like your whole body is weighted down and just to pick up your feet or raise your arm takes all of your power. Your body weight feels double. Keeping your eyes open and trying to pay attention to what is going on around you is a feat.
This is different then just being tired. It is like you have not slept for days even though you just slept for 12 hours.
I did manage to do some small house chores today but I am just leaving them for tomorrow hoping I feel better to push through them and then rest up for the next work week.
Not my most exciting post but this is all I can concentrate on writing today! Be well eveyone!
MS fatigue is terrible and indescribable, but I will try. It is like your whole body is weighted down and just to pick up your feet or raise your arm takes all of your power. Your body weight feels double. Keeping your eyes open and trying to pay attention to what is going on around you is a feat.
This is different then just being tired. It is like you have not slept for days even though you just slept for 12 hours.
I did manage to do some small house chores today but I am just leaving them for tomorrow hoping I feel better to push through them and then rest up for the next work week.
Not my most exciting post but this is all I can concentrate on writing today! Be well eveyone!
Friday, April 19, 2013
My First MS Blog: If Your Sick....Stay HOME!
My First MS Blog: If Your Sick....Stay HOME!: Ok, so besides having MS I am a healthy person. I am a normal weight, I eat healthy, I exercise (sometimes), and I take vitamins. Overall I ...
If Your Sick....Stay HOME!
Ok, so besides having MS I am a healthy person. I am a normal weight, I eat healthy, I exercise (sometimes), and I take vitamins. Overall I can say that I do not reguraly even get a yearly cold. And yes I am proud of that!
So guess what? Last night started the scratchy throat....and then today it was worse. And I have that overall "getting a cold" feeling.
So how did this happen to me you may ask? Well, my theory is that on Monday a co-worker of mine came to work deathly ill. I mentioned that she should go to the MD she was so bad, and she did. Tuesday she stayed home but otherwise has been coughing in the office all week. And like everyone else touching door handles, using the phone, breathing the same air..etc.
So here is my advice to everyone- stay home if you are sick. Stay home if you are contagious, stay home if you cannot speak one sentance without coughing. If the MD gives you a diagnosis and and antibiotic- stay home! And think about everyone else! The company will not colapse if you are not there for 2-3 days! In fact it will be even better because the rest of us will not be calling off later because we are now sick.
Ok, done rantig, because I HATE being sick. I mean no one really likes it but I REALLY hate it. And of course I now have the fear of what a cold (or bronchitis, like she had) will do to cause any type of MS flare up. Does illness pre-dispose you to have a flare up more so them when you are healthy? I don't know. I will be googling that later tonight.
Oh and tonight is a shot night so hopefully that will no depress my immune system even more and cause any "flu like symptons" that are likely. I have been lucky enough to not have those as a side effect. I guess this post has more to do with my fear of what a cold will do to my MS as opposed to suffering through a cold.
So Please if you are sick- stay home, get well, and think of others. I am goin to go google now!
Love!
So guess what? Last night started the scratchy throat....and then today it was worse. And I have that overall "getting a cold" feeling.
So how did this happen to me you may ask? Well, my theory is that on Monday a co-worker of mine came to work deathly ill. I mentioned that she should go to the MD she was so bad, and she did. Tuesday she stayed home but otherwise has been coughing in the office all week. And like everyone else touching door handles, using the phone, breathing the same air..etc.
So here is my advice to everyone- stay home if you are sick. Stay home if you are contagious, stay home if you cannot speak one sentance without coughing. If the MD gives you a diagnosis and and antibiotic- stay home! And think about everyone else! The company will not colapse if you are not there for 2-3 days! In fact it will be even better because the rest of us will not be calling off later because we are now sick.
Ok, done rantig, because I HATE being sick. I mean no one really likes it but I REALLY hate it. And of course I now have the fear of what a cold (or bronchitis, like she had) will do to cause any type of MS flare up. Does illness pre-dispose you to have a flare up more so them when you are healthy? I don't know. I will be googling that later tonight.
Oh and tonight is a shot night so hopefully that will no depress my immune system even more and cause any "flu like symptons" that are likely. I have been lucky enough to not have those as a side effect. I guess this post has more to do with my fear of what a cold will do to my MS as opposed to suffering through a cold.
So Please if you are sick- stay home, get well, and think of others. I am goin to go google now!
Love!
Thursday, April 18, 2013
But you look so good....
So I have read simlar things on other blogs that I would like to reiterate here.
Since my diagnosis it has been a rough ride of very low lows and normal normals. Once diagnosed you go through a battery of tests (multiple MRI's, blood work) AND the highlight, drumroll please... steriod infusions. The infusions ( I received 4 doses IV beta sterol) and then went on a tapered dose of Prednisone. I am telling to this becase this was the low of the low! And during that time I did my best to make it to work and do what I could. But let me explain- I looked and felt like crap! You could see I was sick and something was terribly wrong.
Fast forward to the here and now and you would look at me and I look like myself. I don't look "sick". I wear makeup, I dress as I always do, I style my hair. I look good! But the reality is I am not the self I was 6 months ago! My physical apperance has not changed. I have no mobility issues, I don't use a cane, I can walk in a straight like (kinda, lol), I can use my arms...and the list goes on and I am SO grateful for what this disease has not caused me thus far (and hopefully never). BUT there are the things you cannot see the fatigue, the blurred vision in my right eye when I get tired, the headaches, the tingleing that come and goes, the bladder issues, the dizziness that hits whenever it feels like it, the welts all over my body from the thrice weekly injections, and did I mention the fatigue?
So yes I look fine and I am fine, But I still struggle everyday. Do I struggle as much as others-no, but it is still my struggle and it is hard!
Why am I saying all of this? Is is so no one will ever tell me I look "fine" if they know I have MS? NO. I am telling this to you because you never know what others are going through when they look fine! Did you ever see someone park in the handicap spot and say- "They look fine, what a scam". Well maybe they have MS or some other disease and parking close allows them to save their energy to be as functional as possible for that day. Trust me trying to stay as functional as possible for the DAY is a big feat. You plan, you weigh the pros and cons of your anticipated activity, you store up your energy for a big event or day out. Most people don't have to think this way, they just go. Well now I have to think this way and it is hard! So before you judge someone who looks "fine" think again.
Right now I am sitting here looking fine but my nose feels like someone is dusting it with a feather (tingeling), my right eye is blurry, and I am tired as all get out! But alas I am fine. I will make it and do it all again tomorrow and forever, God willing.
So be well friends. Enjoy life. Do what you want NOW. And keep in mind that how people look does not accuratly represent what they may be feeling or dealing with!
Thanks for listening....
Since my diagnosis it has been a rough ride of very low lows and normal normals. Once diagnosed you go through a battery of tests (multiple MRI's, blood work) AND the highlight, drumroll please... steriod infusions. The infusions ( I received 4 doses IV beta sterol) and then went on a tapered dose of Prednisone. I am telling to this becase this was the low of the low! And during that time I did my best to make it to work and do what I could. But let me explain- I looked and felt like crap! You could see I was sick and something was terribly wrong.
Fast forward to the here and now and you would look at me and I look like myself. I don't look "sick". I wear makeup, I dress as I always do, I style my hair. I look good! But the reality is I am not the self I was 6 months ago! My physical apperance has not changed. I have no mobility issues, I don't use a cane, I can walk in a straight like (kinda, lol), I can use my arms...and the list goes on and I am SO grateful for what this disease has not caused me thus far (and hopefully never). BUT there are the things you cannot see the fatigue, the blurred vision in my right eye when I get tired, the headaches, the tingleing that come and goes, the bladder issues, the dizziness that hits whenever it feels like it, the welts all over my body from the thrice weekly injections, and did I mention the fatigue?
So yes I look fine and I am fine, But I still struggle everyday. Do I struggle as much as others-no, but it is still my struggle and it is hard!
Why am I saying all of this? Is is so no one will ever tell me I look "fine" if they know I have MS? NO. I am telling this to you because you never know what others are going through when they look fine! Did you ever see someone park in the handicap spot and say- "They look fine, what a scam". Well maybe they have MS or some other disease and parking close allows them to save their energy to be as functional as possible for that day. Trust me trying to stay as functional as possible for the DAY is a big feat. You plan, you weigh the pros and cons of your anticipated activity, you store up your energy for a big event or day out. Most people don't have to think this way, they just go. Well now I have to think this way and it is hard! So before you judge someone who looks "fine" think again.
Right now I am sitting here looking fine but my nose feels like someone is dusting it with a feather (tingeling), my right eye is blurry, and I am tired as all get out! But alas I am fine. I will make it and do it all again tomorrow and forever, God willing.
So be well friends. Enjoy life. Do what you want NOW. And keep in mind that how people look does not accuratly represent what they may be feeling or dealing with!
Thanks for listening....
5:15 AM
So why was I up at 5:15 AM you ask? Because I have 3 beautiful dogs who drive me crazy!!! Daisy, the oldest husky, Jessie, Daisy's daughter half husky/half springer spaniel, and then there is Gypsy my one year ond Husky! Let me not forget to mention the 3 cats I also have, but they are not part of this story today! Yes I run an animal shelter! lol
Ok so this is the normal routine for me lately. I come home from work (after I went to the grocery store yesterday after work). As I mentioned fatigue is a big issue with me these days, so like most nights I am in bed by 9pm. Last night was a shot night so that makes me more tired than "normal". I usually sleep until 6:30am, and when I mean sleep I mean my house could blow up and I would not notice, I am dead to the world!
My fiance gets up at around 4:30 for work. He feeds the dogs, lets them out and all of that good stuff. Daisy, my oldest husky then comes to bed with her mommy until I wake up. We snuggle and it is her alone time with me away from the puppy. WELL, not this morning. Apparently she did not go outside with the rest of the herd this morning and continued to walk on the bed as I was sleeping! So fiance leaves, and I am up! Great! I let the girls out again and now all is well, they are all back in sleeping on the couch as I sit here worried that the lack of the last hour of sleep will hit me hard this afternoon! I need all the sleep I can get to be as functional as possible for the entire day!
So here I am blogging at the crack of dawn! I have no children so these animals are my children. They are the light of my day but they are also the pain in my a_ _! Honestly I do not know what I would do without them. They are funny, quirky, and have such interesting personalities. So remembering that I will press on today and remember their fuzzy faces as I try not to fall into and exhausted coma this afternoon! Gotta love my girls!
Ok so this is the normal routine for me lately. I come home from work (after I went to the grocery store yesterday after work). As I mentioned fatigue is a big issue with me these days, so like most nights I am in bed by 9pm. Last night was a shot night so that makes me more tired than "normal". I usually sleep until 6:30am, and when I mean sleep I mean my house could blow up and I would not notice, I am dead to the world!
My fiance gets up at around 4:30 for work. He feeds the dogs, lets them out and all of that good stuff. Daisy, my oldest husky then comes to bed with her mommy until I wake up. We snuggle and it is her alone time with me away from the puppy. WELL, not this morning. Apparently she did not go outside with the rest of the herd this morning and continued to walk on the bed as I was sleeping! So fiance leaves, and I am up! Great! I let the girls out again and now all is well, they are all back in sleeping on the couch as I sit here worried that the lack of the last hour of sleep will hit me hard this afternoon! I need all the sleep I can get to be as functional as possible for the entire day!
So here I am blogging at the crack of dawn! I have no children so these animals are my children. They are the light of my day but they are also the pain in my a_ _! Honestly I do not know what I would do without them. They are funny, quirky, and have such interesting personalities. So remembering that I will press on today and remember their fuzzy faces as I try not to fall into and exhausted coma this afternoon! Gotta love my girls!
Wednesday, April 17, 2013
New to Blogging. New to MS
So I am attempting to do this blog thing! I can say that I am not the most computer literate person in the world so this is a little hard to figure out how this all actully works! Yesterday I posted a little blurb just to see if it worked. So today I will say a bit more.
Today was my second shot of Rebif 44mcg. I have tolerated the 8mg and 22mcg quite well and so far so good with the 44mcg. Some site reactions, a slight headache but NO flu like symptoms! That was my biggest fear. So I feel I am well on my way to getting this injection thing down and being ok with it.
I don't know if I will every be "ok" with being diagnosed with an incurable disease but I am managing. I fear the future but I also hold closely that you do not know what tomorrow brings so try and live for today! That I know for sure more than ever. But all you MSers will know that with the extreme fatigue it is difficult at times to do everything you want or think you should. By the end of my work day I am wiped out! I take it day by day and often times push myself too much which makes me not as useful at home. Luckly I have a great fiance who helps out a lot and has ben very understanding. I know I am lucky.
Few people know about this dianosis of mine. Family does of course and a few close friends who I have daily contact with. My work knows as I couldn't really hide it as they were the ones who diagnosed me (I work for Ophthalmologists). They all have been greatly supportive and kind and again, I know I am so lucky. I do not feel the need to hide my diagnosis, but I am careful to who I tell only because once you do you can never take it back!
I am still looking for support but I have only been dianosed for 2 months so hopefully this blog will bring some of that to me. I have been following a few other blogs and I hope to bring some humor, insight, teaching, and tell you what it really is like to be me and have this new journey to face.
Be well all!
Today was my second shot of Rebif 44mcg. I have tolerated the 8mg and 22mcg quite well and so far so good with the 44mcg. Some site reactions, a slight headache but NO flu like symptoms! That was my biggest fear. So I feel I am well on my way to getting this injection thing down and being ok with it.
I don't know if I will every be "ok" with being diagnosed with an incurable disease but I am managing. I fear the future but I also hold closely that you do not know what tomorrow brings so try and live for today! That I know for sure more than ever. But all you MSers will know that with the extreme fatigue it is difficult at times to do everything you want or think you should. By the end of my work day I am wiped out! I take it day by day and often times push myself too much which makes me not as useful at home. Luckly I have a great fiance who helps out a lot and has ben very understanding. I know I am lucky.
Few people know about this dianosis of mine. Family does of course and a few close friends who I have daily contact with. My work knows as I couldn't really hide it as they were the ones who diagnosed me (I work for Ophthalmologists). They all have been greatly supportive and kind and again, I know I am so lucky. I do not feel the need to hide my diagnosis, but I am careful to who I tell only because once you do you can never take it back!
I am still looking for support but I have only been dianosed for 2 months so hopefully this blog will bring some of that to me. I have been following a few other blogs and I hope to bring some humor, insight, teaching, and tell you what it really is like to be me and have this new journey to face.
Be well all!
Tuesday, April 16, 2013
My First MS Blog
OK, so I have RRMS! I was just diagnosed in February 2013 at the age of 37! Now for all of us who have MS we know that the symptoms that got me diagnosed were not the first over the course of the past 10 years! But I feel free that I now KNOW what is going on. Hopefully this blog will allow me to share the ups and downs of this new journey!
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