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????

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Frustrated With Multiple Sclerosis

Frustrated With Multiple Sclerosis

I guess it is time that I write about what is going with me and the Multiple Sclerosis because I haven’t really done an update in a while.  If you were to look at my you wouldn’t be able to tell that anything is wrong with me because everything that is going on is on the inside or at least if I don’t tell you anything is wrong then you won’t know anything is wrong.

For the last 2 or 3 months I have been exhausted to say the least.  I wrote a post earlier this week about how I am not sleeping but this exhaustion is so much more than just not sleeping.  It is so hard for me to explain the difference between being tired because of lack of sleep or being exhausted because of the MS.  I don’t think there really is away for me to explain it other than saying I am so tired that if I could stop breathing I would because that takes more energy than I have.

I know that my lack of sleeping isn’t helping the situation any either so that gets to me as well.  I just feel like I am falling apart and we have no reason as to why I am feeling this way.  I had an MRI done at the end of August and when I went to get the results my scanned showed that the disease hadn’t been active in the last six months.  Which should be a great thing but I felt confused and pissed off by it.  I really wish the scan would have shown something so that there was some sort of reason for why I am feeling the way that I am.

After my last appointment  I started on a new medication and I have taken it for a month and haven’t seen any change in how I am feeling so I don’t know if it is working or not.  She did say that I could take it twice a day and I haven’t done that yet because I already take so many pills that I hate taking more but I think I am going to try to take it twice a day for a couple of weeks and see what happens.

It is so hard having something like MS because it sucks when you can’t figure out what is wrong in order to try to fix it.  I have to wonder if I am going to have an MS relapse soon because this is usually how you feel before you have one or it is at least how I have always felt before one.  As of now I am “stable” but I don’t think I truly am.  There has to be something going on and it just isn’t showing up on the MRI.  My next MRI is in February and I see my doctor again at the beginning of March so we will see what happens in the next few months.

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My Sleeping Problems

Sleeping Problems

So I haven’t ever written about my problems with sleeping on this blog but I feel I need to write about it because there may be other people out there struggling with the same things.  I also hope that someone out there may have some suggestions for things I have tried yet to try to help me sleep.   I have always had problems sleeping but in the last few years it has gotten 100 times worse.

I first really started to notice my sleeping problems when I was diagnosed with Multiple Sclerosis when I was 15 or 16.  I have always had problems sleeping but I really started to notice them in high school and college.  From the age of about 16 I was given prescriptions for Ambien and Sonata which are both sleeping pills.  So at this point those two no longer work for me.  When I was in my mid twenties they prescribed me Lunesta which for me was a wonder drug because for the first time I was able to sleep and I didn’t seem to get used to them.

I took those on and off for years.   The insurance I know have through work refuses to pay for them and there is no way I can afford to pay over $200 a month for them so I haven’t been able to get them.  Since I haven’t been able to get them I have had to start trying all the over the counter sleeping medications and I haven’t had much luck with them.

I have tried taking Melatonin and I will still take it sometimes but I have found that I have to take so much of it to get me to sleep that I end up with a huge headache the next morning.  The only thing I have found that works is taking a combination if Tylenol PM & Ibuprofen PM along with a time released Melatonin pill to help me stay asleep longer because lately I manage to take enough stuff to fall asleep but I can’t stay asleep to save me life.

I have also stopped watching TV after work and I try not to use my cell phone once I am home so that I can try to wind down from the day but no matter what I try nothing seems to be working for me.

Does anyone know of anything else I can try to use for sleep?  I will take any and all suggestions at this point!

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Changes From Last Year To This Year

Changes

This week for the writers workshop I am going to write about what was going on this time last year and what I think of it all now that it is a year later.  I went through the whole month of April and I really only wrote 5 actual posts.  The few other posts I had were reviews of some sort. Here is a list of the posts from last year if you would like to go back and check them out.  I also will list any changes in how I am thinking from last year to this year.

  • My MS Medications- all of my medication are basically still the same and since I am stable there is no reason to change them or to even mess with them.
  • Standing Still- I forgot that I wrote this post last year and to be honest I still feel like I am standing still but I also feel like I am all alone and I know that is because of how I have treated people.  There are parts of this post that are still true and other parts that aren’t because I really don’t have any friends anymore.
  • MS Tuesdays Medications That Don’t Work For Me- nothing has changed with this post because nothing has stopped working for me.
  • How To: Break Your New Cell Phone- lets just say I haven’t broken a phone since this post and I better not break my iPhone or I am going to be pissed.
  • My Top 10 YouTube Channels- this has changed so much so I am going to make another Top 10 because I have some new ones and I think everyone would like.  I still like all the ones I listed but there are some newer ones that I want to share with everyone.

How has your blogging changed from last year to this year?

Mama’s Losin’ It

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MS Tuesdays-Medications That Don’t Work For Me

This week for MS Tuesdays I am going to talk about the  medications that I have taken to treat MS and why they didn’t work for me.  I have tried quite a few of them and I hope that people that this might help someone who is having a hard time finding a treatment that may work for them.  Please don’t base your choice for treatment on this post because just because something didn’t work for me doesn’t mean that it won’t work for you.  My best advice to research them and then with the help of your doctor go with the one that you both think will work the best for you.

I have taken 3 treatments other than the Tysabri that I am taking right now.  I have taken Avonex, Betaseron, & Copaxone.  I am going to talk a little bit about each one and how the effected me while I was taking them.

  • Avonex- I started out on this medication when I was diagnosed at 15.  Let me just say that this medication I took on and off for years because it was the one medication at the time that had the least amount of shots a week that you had to take.  This medication was rough for me to say the least.  They say it has flu like symptoms.  The best way to descride how the medication made me feel for the whole weekend after I took it is my skin literally hurt to have anything touch it.  It didn’t matter if I took the Benadryl like they told me to.  Every week I was sick all weekend and as time when on they said the reaction should get less and less but for me it got worse every week.  Like I said I tried this medication for years on and off because it was only taken once a week unlike all the other treatments at the time that are taken multiple times a week.
  • Betaseron-This medication is taken every other day.  So one this medication was literally sick everyday of my life because I never got used to the side effects of this medication as well.  This medications has the same side effects as Avonex has.  This one had an autoinject so that I could give myself the shot but me being me I couldn’t push the button I would sit there for an hour and in the end someone would have to come and push the button for me.  I hate giving myself shots and since no one else wanted to give me shots this medication did last long either.

Here is the link to where I talk about all the interferon treatments they have.

  • Copaxone-Now this medication isn’t an interferon so they thought that this one should work for me.  This medication is given through a shot everyday day.  Now this really didn’t work for me because I couldn’t give myself shots.  I think I tried this one for about a year but towards the end I wasn’t taking it regularly because all the injection sites would get red and develop hives.  I will also say that at this point in my treatment I was being a stubborn teenager and I just wanted to ignore the disease and act like it wasn’t part of my life.  Here is the link to the original post where I talk about all the possible side effects of this medication.

There are more than just these 3 medication out there for MS and last year the did release the first pill you can take for MS.  If you want to read more about that you can go and read this post where I wrote about it before.

The best advice I am give anyone is to research treatment options and then with the help of your doctor pick the one that will work best for you.

If you want to know more information or want me to write about something please let me know in the comments below.

Digiprove sealCopyright secured by Digiprove © 2012 Margaret Margaret

My MS Meds

I am not sure if anyone would be interested in the medications I currently on for my MS but I am sure there is someone who would be interested to know what is working for me right now and all the things I have tried that hasn’t work for me over the 11 years I have be treating the MS.  For this post I am going to talk about the medications I am currently on and what I am taking them for.

Tysabri-I am currently using this to treat the MS.  I have been on it for over 3 years now and even though it is dangerous I won’t stop taking it because it is the only MS drug that is out there right now that is controlling the MS.

Baclofen- I take this three times a day.  There are some days that I may only take it once but depending on pain & how I am feeling I may take it all 3 times.  I use this for the spasms I have and I also use this because of my back injury.  If I don’t take this at night I wake up stiff in the morning and in tons of pain.

Zoloft(sertraline)-I take this once a day and it is my antidepressant.  Depression runs in my family but I also think that the MS has made mine worse and also made me super anxious.

Loritab- I use this as needed for pain.  I get 20 pills a month and I usually use them all but  most of them are use the weekend and week after my infusion because that is when I tend to have the most pain.

Fiorinal- I use this for my migraines.  I have had migraines since I was in 5th grade.  Most of the time if I can catch it at the beginning I can stop it from getting super bad but on days that I don’t catch it or it doesn’t respond to the usual things I have to take 2 of these.  The thing I love about this medication is I can still function at work while I am taking it.

I also use things such as Benadryl, Tylenol, and Ibuprofen almost daily.  If you have any questions about any of the medications please let me know.  Next time I am going to write about what MS treatments I have used and why I stopped using them.

Digiprove sealCopyright secured by Digiprove © 2012 Margaret Margaret

DOCTORS APPOINTMENT

I HAD AN APPOINTMENT WITH DR. KLEIN YESTERDAY. IT WENT BETTER THAN I THOUGHT IT WOULD GO. I THOUGHT SHE WOULD BE MAD THAT I STOPPED A MEDICATION BUT SHE WASN’T. SHE UNDERSTOOD THAT I STOPPED IT BECAUSE OF THE WEIGHT GAIN. SO SHE PUT ME ON A NEW MEDICATION AND WE WILL SEE WHAT HAPPENS WITH IT. I KNOW IT WILL HELP MY BACK BUT I DON’T KNOW IF IT WILL HELP WITH SLEEP OR MY HEADACHES BUT HELL IT IS WORTH A TRY. AT THIS POINT I AM WILLING TO TRY ANYTHING.

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