Sick & Tired

Sick of multiple sclerosis

I know I have written posts about this in the past but right now it is something that is bothering me again.  I am so sick and tired of Multiple Sclerosis right now because I am tired of feeling like crap.  Everytime I go to the doctors they are switching up medications to try and make me feel better but nothing ever works.  I am just tired of everything that has to do with Multiple Sclerosis and just not feeling well.

I know my situation could always be worse which is why I don’t talk much about how I am feeling but I have reached a point where I need to write about how I feel so that I  can at least get it out and off of my chest.  I also know that in the world of MS I have been relatively lucky as far as the disease progression goes but like I said before I am just sick of the disease.

I am sick and tired of being sick and tired.  I know there really isn’t anything people can do about this at this point but I still wanted to write this because I don’t know that I have ever read a blog where someone with MS was totally honest about how much the disease sucks.  I know this will pass and I will get back to the point where the things just roll off of my back but right now I just want to bitch about it.  I also want to let others know that it is okay to be pissed off about what the disease does to us.

I am also tired of people thinking I am lazy because after I get off work the only thing I want to do is go home and go to bed.  I wish there was someway for me to explain to others how tired I get going to work everyday.  I wish I could find something to give me more energy but as it stands everything I have tried just makes things worse.  I know if I could sleep I wouldn’t be as tired but like usual my health insurance company sucks and they won’t fill the one medication that does help me sleep and I can’t  afford the medication without it being covered.

Anyway I am just bitchy and sick and this is what happens when I feel like this for months on end.  How are things going for you guys right now????

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

A Rough Time

This last weekend was super tough for me.   I am switching antidepressants because of my eating disorder and things are not going well at all.   I had my infusion on Friday and I really think it messed with me bad.  I literally slept all day Saturday so I didn’t take any of my pills.  Then on Sunday I didn’t take them because I didn’t want to get sick.  Let me tell you never again will I miss any days of taking my antidepressants.  Now to top off the missing two days I am starting the new one.  I am a total mess.  I hate messing with antidepressants it is so stressful and not to mention emotional.   I am sit and think today of everything and have to wonder how I have made it this far in life.  I have gone through some major stuff and yet “most” days I am able to keep going and not think about all my past issues.   Although the past few days though I find that I am barely hanging on by a thread.  I find it hard to deal with all of my past issues right now.  I know when I am evened out on my antidepressants that I am okay and I can deal with the day-to-day things going on.  I sit at work with my personal life in chaos and can’t even get away because work is a joke right now.   I never before have seen when it rains it pours come anymore true than right now.

I was getting to leave work yesterday and I broke down crying because I remembered like it was yesterday all the emotions and feelings I had when I placed my daughter for adoption almost 6 years ago.  I sit here and I can remember all the feelings I felt when I saw her for the first time.  She was about 12 hours old before I even saw and held her.  When I went into the hospital I didn’t want to ever see her.  Before I had her I felt that it would be easier for me if I never saw her or held her.  I had called my night nurse for a pain pill.  When the nurse came in with the pain pill she told me that it was time to feed my daughter and asked me if I would like to feed her.  As I was sitting there in the middle of the night I knew it was something I needed to do.  After the nurse brought her in and left the room I remember looking at my daughter and crying because I knew if a few short days I was going to place her with her family.  I remember feeling so happy that she was here and perfect but so sad knowing that every minute that went by was one less minute I was going to have her with me.   Then as I thought about it more all the feelings that I had when I was signing away my rights to her came back as well.  I can remember sitting there with my social worker and two nurses with the pen in my hand and the paper in front of me thinking that if I didn’t hurry and sign the papers I never was going to be able to do it.  I remember when I was down the great weight I felt on my shoulders and still have that weight today.  I hoped then and still do hope that I did what was best for her.  I pray every day that I truly did what God wanted me to do.   I remember sitting there after I signed holding her and knowing that the time to say goodbye was there.  We were all talking and I got quiet and started to tear up.  I knew in my heart that it was time to hand her over to her family and walk away.   I remember getting up and handing her off to her adoptive dad and then turning around and breaking down because of what was going on.  I vaguely remember the adoptive mom asking if she could give me a hug and me saying no.  At that point I watched as they walked out of the room with her.  I then got in a wheel chair and left the hospital empty handed and broken hearted.

It is hard to be at work and feel all of that like it was happening yesterday.   It is hard for me to feel all these emotions and know that they will pass soon but not sure how long I can hold out for that time to come.  This post is just a lot of rambling but I hope it helps me because now it is out.  There is more that I am feeling but I don’t have the emotional capacity to write about it now.   I hope that everyone has had a better weekend than me.  As for the NES update and an MS post I will hopefully pick those up again next week!

Me & The MS

This post has been harder for me to write than when I posted Brita’s story.  I began to get sick when I was in 10th grade.  The first really symptom that I can remember is my left leg started to drag.  It would just stop working at random times.  I can remember in gym class that year we had to run the mile for a grade and I did my best but I was going to fail the class because I could run it fast enough because my leg was dragging.   We went to the doctors and lets just say the only reason they did an MRI was because my grandma pushed for it.  When that came back they called us in because they needed to talk to us.  They said that there was what they call lesions on the brain.  They show up as white spots on the brain.  They told us that they needed to do a spinal tap to rule out MS. 

The spinal tap in and of it self was a huge ordeal to say the least.  I got the spinal tap on a Thursday and by Saturday I was so sick.  I had a huge headache and was throwing up.  So we went to the ER because it was obvious that my spinal tap hadn’t sealed.  When we got the ER they made me lay in the waiting for about an hour until they took me back to a room.  After they knew what was going on they wanted to send me home because the guy that could fix it was on call and he didn’t want to come and do a blood patch.  He finally came in after my grandparents raised a living hell because I could have died if I didn’t get a blood patch ASAP.
When the results of the spinal tap came back they called us in again and told my and my grandparents and I had Multiple Sclerosis.  They wanted to start me right away on Avonex.  I don’t really remember much of the next couple of months.  I think I was still numb to the whole situation.  What I do remember is how sick the medication made me every weekend.  I took the shot on Friday nights and spent the whole weekend with flu like symptoms. I stopped taking that medication after awhile and started on Copaxone.  With that one I had to take a shot everyday and that didn’t last very long either.
I was pretty stable and not much went on until a year ago and that is when my hand went numb and it got hard to do anything with them.  Slow I have been able to use them more but it feels like they are asleep all of the time anymore.  I started on Tysabri about a year ago and so far it has worked the best but I also has a major problem with it as well.  You can develop a condition known as PML that will basically make you a vegetable.  They are finding out that the longer you are on the drug the higher your chances are of getting this serious condition. I am not sure how much longer I will be on this medication but I don’t have any other options right now.
That is my story in a nutshell.  If you have any other question feel free to ask me I will answer any questions that you may have.   


OMG

Traffic totally sucked ass last night! (it took me 2 hours to get home when it usually only takes 45 min’s)
and
I am still sick and pissed!

An Update On Me

I can’t believe it is already Thursday.  It seems like I just started the week but I am glad it is because I think that I am getting sick.  So I hope if I am that I can get sick this weekend so that I don’t have to work and be sick at the same time.  All I can do is wait and see what happens.  I know if I go home and drink a tea that my grandma makes I will get better so I think I am going to do it even though it makes me wanna gag and throw up.  I will drink it and hopefully get rid of whatever I am trying to come down with. 
Monday and Tuesday of this week were totally busy for me and know it has totally slowed down and I am totally bored.  I hate how that tends to happen here.  I am either overwhelmed or totally bored.  There is never a happy medium.  I guess that is how it is always going to be but I am still going to complain about it because well it totally bugs the hell out of me.  I barely had time to post on Monday and Tuesday.  Oh well like I always say at least I have a job!
It is supposed to snow this weekend and I am totally not looking forward to that at all.  I hate the snow and I am so not ready for it come and the thought of driving in it again totally pisses me off!  I really think I need to move to somewhere where it won’t ever snow.  I am hoping we don’t have a bad winter because I don’t wanna see how bad my car really will do in lots of snow.  I lucked out last year because we didn’t have a bad winter at all but I don’t know if I am going to be that lucky this year or not.  We will wait and pray that it isn’t a bad winter at all.
The girls are hating the fact that it is getting so cold outside.  They are always getting mad that I would let them go outside when it gets to be too cold for them.  Elinore has started this really weird habit of not going to sleep at night until her whole herd is home.  For example the other night my grandpa was having a sleep study done so he wasn’t home that night and she was restless most of the night like she was waiting for him to get home.  Who knew that a cat really cared if people were around or not.  Hell most cats just deal with people because we feed them.  Guess she really cares if people are home or not.  I have decided that I have the two weirdest cats that there are out there.
Josh is supposedly going to be home for my birthday but we will see if that happens or not.  I can never really plan on him being here or not.  It is just something that I have learned to deal with.  The only thing that is going to bug me is he thinks it is just going to be me and him the whole time he is home and well that won’t happen because I am a home body and we both are totally broke so we will be at my Grandparents house and hell it is Thanksgiving weekend which means shopping like a mad woman on Friday!!!!
For Thanksgiving this year I am going to go over to my dads.  I am nervous for this because well I don’t really know him yet and it will the first time my husband has met him.  I have met with him two other times and it was when my husband went crazy last year and thought he wanted a divorce.  So it should be interesting to say the least.  You never do know what my husband will say or do.  I am sure he will love a new group of people to tell his stories to. 

How has everyone’s week been so far????  What are your plans for this upcoming weekend??? 

Hope everyone is having a great day!

Six Word Saturday!

Totally sick again!  This totally sucks!
Need I say more!

STRANGE DAY

WEDNESDAY WAS A REALLY STRANGE DAY FOR ME. THINGS AT WORK WERE DOING WEIRD THINGS AND THEN JOSH SHOCKED THE HECK OUT OF ME. I ALSO STARTED TO FEEL FUNNY. I THINK I AM HAVING AN MS FLAIR UP BUT THE AGAIN I NEVER HAVE ANY IDEA ON WHAT MY BODY IS DOING ANYMORE. ALL IN ALL I HOPE TODAY ISN’T AS WEIRD AS YESTERDAY. I DON’T KNOW IF MY BRAIN COULD HANDLE ANOTHER DAY LIKE YESTERDAY.
WHERE TO BEGIN WITH YESTERDAY. WELL LETS SEE THE FIRST WEIRD AND VERY STRANGE THING THAT HAPPENED HAD TO DO WITH A COMPUTER AT WORK. ONE OF THE GUYS NEEDED HELP PRINTING OFF A PDF FILE. SO AFTER I GOT THAT FIGURED OUT AND STARTED PRINTING IT WE REALIZED THAT IT WAS PRINTING THE PAGES OUT OF ORDER AND IT DIDN’T WANNA PRINT ALL THE PAGES SO WE TRIED AGAIN AND GOT A TOTALLY DIFFERENT PRINT OUT THEN BEFORE. ON THE THIRD TRY WE GOT WHAT WE WANTED UNTIL THE END. WE DIDN’T GET PAGE 18 AND AFTER THAT IT PRINTED DOUBLES OF THE REST OF THE PAGES BUT THE WEIRD PART IS THE DOUBLES DIDN’T MATCH AT ALL THEY WERE TWO DIFFERENT MODELS?!?!?!?! IN THE END WE HAD TO GO THROUGH PAGE BY PAGE AND HAVE THE PDF OPEN ON THE COMPUTER AND FIGURE OUT WHAT WAS WHAT. WE PRINTED IT TONS OF TIMES AND WE NEVER DID GET THE RIGHT COMBINATION OF PAGES. I AM STILL CONFUSED ON WHAT WAS GOING ON BECAUSE I HAVE NEVER SEEN THAT HAPPEN BEFORE.
JOSH SHOCKED ME BECAUSE HE WAS IN FLORIDA AND HE ACTUALLY DID WHAT HE SAID HE WAS GOING TO DO!!! I WAS SO SHOCKED I DIDN’T EVEN KNOW WHAT TO SAY TO HIM. HE HAS NEVER BEFORE DONE WHAT HE SAID HE WAS GOING TO DO WHILE HE IS THERE. HE HAS ALWAYS IGNORED ME AND FORGOT THAT I EXISTED WHEN HE WAS IN FLORIDA OR SPRINGFIELD. SO MAYBE HE IS ACTUALLY TRYING AND HE IS CHANGING. I MEAN I CAN’T BE SURE BUT HE IS SURE ACTING LIKE IT THAT IS FOR SURE. LIKE I TOLD MISTI IT WILL TAKE TIME TO SEE WHAT HAPPENS OVER A LONGER PERIOD OF TIME. ONLY TIME WILL TELL IF HE HAS REALLY CHANGED AND IF HE IS TRYING. I HOPE FOR THE BEST BUT WE WILL SEE WHAT HAPPENS OVER TIME. I AM HOPING FOR THE BEST THOUGH AND STAYING POSITIVE ABOUT IT ALL!
THE GIRLS ARE CRAZY. I GUESS THIS MORNING MY GRANDPARENTS WERE OUT IN THE GARDEN AND SYLVIA WANT TO BE WITH THEM OUT THERE. WELL THE ONLY PROBLEM WAS THE SPRINKLERS THAT WERE BLOCKING HER WAY. SHE JUST SAT THERE AND CRIED AND CRIED FOR THEM TO COME GET HER. I MEAN ALL SHE HAD TO DO WAS WALK AROUND. MY GRANDPARENTS THOUGHT THAT SHE WAS SO FUNNY. I GUESS SHE COULDN’T FIGURE OUT THE WHOLE WALK AROUND THE SPRINKLERS. THEY ARE SO CUTE AND CAN ALWAYS MAKE ME LAUGH OR SMILE!

UPDATE

SO I REALIZED TODAY THAT I HAVEN’T POSTED IN OVER A WEEK. I GUESS I BETTER POST SOMETHING TO MAKE UP FOR IT. LETS SEE NOT MUCH HAS REALLY GONE ON SINCE I LAST POSTED. MY BROTHER IS IN WASHINGTON FOR THE REST OF HIS TRAINING AND HIM AND HIS GIRLFRIEND ARE FIGHTING LIKE ALWAYS. GOD ONLY KNOWS WHAT THEY ARE FIGHTING ABOUT ALL THE TIME ANYMORE. I GUESS SHE HAS STREP AND THAT HAS ME WORRIED BECAUSE MY NEXT INFUSION IS ON FRIDAY. I AM BEING EXTRA CAREFUL AND WHAT NOT AROUND HER. SO I THINK IT WILL BE OK AND NOT GET IT AGAIN. THERE REALLY ISN’T MUCH TO SAY SO I THINK THIS ABOUT IT FOR THIS POST. I WILL TRY AND POST MORE OFTEN!

DRAMA FILLED NIGHT

WELL LAST NIGHT WAS DRAMA FILLED THAT IS FOR SURE. I KNOW CAN SEE WHAT OTHERS SAW WHEN JOSH AND I FOUGHT ALL THE TIME. IT WAS A JOKE THAT IS FOR SURE. I TRIED NOT TO ARGUE AND HOME SO THAT OTHERS WOULDN’T HAVE TO HEAR US. WELL MY BROTHER AND LACHELLE DON’T HAVE THE SAME CONSIDERATION. THEY STARTED FIGHTING AT LIKE 10:30 LAST NIGHT AND DIDN’T STOP UNTIL ABOUT 1 AND THEN IT STARTED ALL OVER AGAIN AT 5:30 THIS MORNING. I AM NOT SURE WHAT THE ARGUMENT WAS ABOUT BUT I FINALLY SAID SOMETHING AND OF COURSE THAT CAUSED MY LITTLE BROTHER TO GET MAD AT ME, BUT WHAT I SAID WAS SOON FORGOTTEN BECAUSE MY GRANDMA CALLED HER A BRAT. LOL MY GRANDMA SAID SHE WOULD HAVE KILLED MY LITTLE BROTHER AND I IF WE ACTED LIKE SHE WAS ACTING. MY BROTHER THEN GOT MAD AT GRANDMA FOR CALLING HER A BRAT. HELL SHE WAS ACTING LIKE A BRAT. SO WHEN IT IS ALL SAID AND DONE I GOT ABOUT 3 HOURS OF SLEEP LAST NIGHT. LIVING THERE IS SUCH A JOKE THAT IS FOR SURE. LACHELLE WAS ON A BITCH ALL WEEKEND LONG THOUGH. I AM NOT SURE WHY SHE ALWAYS PISSY BUT GRANDPA HAS HAD ABOUT ENOUGH OF IT I THINK. HE SAID THAT HER AND HIM ARE GOING TO SIT DOWN AND TALK SO WE WILL SEE IF THAT EVER HAPPENS.
I WAS SO SAD THAT THE WEATHER SUCKED ALL WEEKEND LONG. I WAS WANTING TO WALK TO TRY AND LOSE SOME WEIGHT BUT IT WAS ALWAYS RAINING SO I COULDN’T WALK OUTSIDE. I WILL TRY AGAIN TONIGHT. I HAVE TO LOSE THE WEIGHT THAT I HAVE GAINED LATELY. I AM BACK IN MY FAT CLOTHES AGAIN AND THAT ALWAYS MAKES FOR A BAD BAD DAY.
THE GIRLS ARE ALWAYS OUTSIDE NOW. THEY ARE LOVING THE WARM WEATHER. THEY WERE SAD ALL WEEKEND CAUSE THEY COULDN’T GO OUTSIDE AND PLAY. I HOPE IT STAYS NICE FROM NOW ON. I AM TIRED OF COLD FOR RIGHT NOW AND SO ARE THE GIRLS!
THIS SWINE FLU IS REALLY SCARING ME IT MAKES ME WANNA BE A HERMIT AND NOT EVEN WORK. I AM SCARED THAT I WILL CATCH IT. ALL I CAN SAY IS I AM BEING CAREFUL AND I PRAY TO GOD THAT I DON’T CATCH IT.

FRIDAY PARTYING OR . . .

WELL IT IS FRIDAY NIGHT AND I AM ALREADY HOME. I KNOW I FIND IT WEIRD TO I AM NEVER HOME THIS EARLY ON A FRIDAY, BUT IT IS MUCH NEEDED FOR ME. I AM REALLY NEED TO GET BETTER. I HAD A REALLY FUN NIGHT THOUGH. AFTER WE GOT OFF OF WORK WE WENT TO A COFFEE SHOP. IT WAS REALLY REALLY FUN UNTIL ONE OF THE WORKS MADE A DUMB COMMENT TO US. HE BASICALLY STEREOTYPED US. HE WAS PLAYING DIFFERENT MUSIC BUT IT WASN’T BAD ALL. I KIND OF LIKED IT. HE SAID I BET YOU TWO DON’T LIKE THIS MUSIC. I WAS LIKE WTF??? MISTI AND I JUST LOOKED AT EACH OTHER AND THEN GOT UP AND LEFT. AFTER THE COFFEE SHOP HER AND I WENT TO DINNER AT THE LONESTAR STEAK HOUSE IN SUGAR HOUSE. IT WAS REALLY REALLY YUMMY. WE BOTH HAD A DRINK AND ATE. WE STAYED THERE FOR AT LEAST 2 HOURS. YOU WOULD THINK THAT HER AND I NEVER SEE EACH OTHER BECAUSE WE CAN TALK FOR HOURS. WHAT PEOPLE DON’T KNOW IS THAT WE ARE TOGETHER ALL WEEK LONG AT WORK AND MOST WEEKENDS. ALL IN ALL IT WAS A GOOD FRIDAY NIGHT. IT WAS A GOOD CHANGE TO NOT GO TO A CLUB. I REALLY ENJOY JUST SITTING AT A COFFEE SHOP AND PLAY CARD GAMES LIKE WE DID TODAY.
I REALLY WISH THAT I COULD GET OVER WHATEVER I HAVE. IT IS SURE GETTING OLD BEING SICK ALL THE DAMN TIME. THIS AFTERNOON MY GLAND ON THE LEFT SIDE OF MY THROAT GOT REALLY SWOLLEN AND IT MADE MY EAR HURT. IT IS GETTING TO BE A JOKE THAT IS FOR SURE. I AM REALLY WONDERING HOW LONG I CAN BE SICK. IT IS FUNNY THAT I AM STILL SICK FROM MY LAST INFUSION AND THE NEXT INFUSION IS ONLY A WEEK AWAY. OH WELL IT HAS TO BE DONE AND I CAN’T COMPLAIN CAUSE I AM THE ONE THAT CHOOSE TO TAKE THE MEDICATION. I AM SURE I WILL GET BETTER AT SOME POINT. I WON’T KNOW WHAT TO DO WHEN THAT DAY HAPPENS BUT I AM SURE IT WILL BE NICE THAT IS FOR SURE.
JOSH CALLED ME TODAY AND SAID THAT THE PEOPLE FIXING HIS TRUCK SAID THAT THEY FOUND HIS WEDDING RING. HE THOUGHT THAT HE HAD LOST IT WHEN HE ROLLED HIS TRUCK. HE WAS HAPPY WHEN HE TOLD ME THAT. I WASN’T AS EXCITED THAT IS FOR SURE. I GUESS HE IS IN SPRINGFIELD TO GET HIS TRUCK. I AM NOT SURE WHAT HE IS GOING TO DO ABOUT HIS GIRLFRIEND BUT I GUESS THAT REALLY ISN’T MY BUSINESS. HE CAN DO WHATEVER WILL MAKE HIM HAPPY.