Multiple Sclerosis Tuesday-Updated Treatments Post

MS

This week’s MS Tuesday post is going to be an update to my post where I talk about the treatments there are for Multiple Sclerosis.  If you want to check out the original post you can click here but I am going to copy and paste the old post and updated it with the new treatments that have come out since that post was originally published.

I am going to do a small overview of the different Multiple Sclerosis medications out there right now.  I want to start by saying that there is no cure of MS right now.   There are a few medications that will hopefully slow the progression on the disease.

The first group of drugs are called Immune modulating drugs. They work by keeping the immune cells from interacting with other cells.  This group consists of 3 different drugs they are called Betaseron, Rebif, and Avonex.  There is one other drug that is under this type of medication and it is Copaxone.  This one is made of amino acids and works differently than the interferon’s.

There is Tysabri that attaches itself to the blood brain barrier and doesn’t let immune cells into the brain.  There are several other treatments such as: Novantrone, Cytoxan, Imuran, Rheumatrex, and Trexall.  All of those treatments are drugs that will suppress the immune system.

Since I posted the original post they have come out with several pill’s that you can now take.  Before you had to have shots and/or an infusion so coming out with pills was huge for people who have MS.  The names of the pills are: Gilenya, Tecfidera and Aubagio.  I don’t know much about the new drugs out because right now Tysabri is still working for me so I am not in a hurry to try any new medication right now.

They will sometimes give a person steroid treatment if they are having an MS flare up or relapse.  I have been given steroids several times and I will always refuse them now.  I don’t think they really didn’t anything but make me gain weight and make my eyes see funny colors.  I can see why they do them but I would rather have some disability than deal with the side effects of the drugs.

I have taken several different MS medications and if you would like to know which ones I have taken and how they affected me please let me know.  There are also medications that we are given to help manage side effects of medications and also to deal with how the disease affects each of us as well.  If you would like to know anything else please let me know!

The sites I used to get the information for this post from: 
http://www.emedicinehealth.com/understanding_multiple_sclerosis_medications/page6_em.htm#inter (original site I used)
http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/basics/treatment/con-20026689 (new treatments info)
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Asking For Help!?!?

Asking For Help

Today I am going to talk about asking for help and how I have a super hard time asking for help and I also have a hard time accepting help.  I am sure the reason for this is the fact that my grandma hardly ever asks for help.  I have found that I never ask for help.  I feel like I don’t even know how to ask and just thinking about asking for help make me nervous.

As for accepting help I find that I don’t really have people offer to help so I don’t know have much experience with this.  I do know that the few times someone has helped me I feel bad because I think I should be able to do everything myself and hate when I can’t do something.  I do ask for help at work because I am the first to admit that I don’t know it all and even if I did know it all there is no way I can do everything, even if people think that I should be able to.

I guess the hard part for me is I don’t really have anyone who is close enough to me that I would trust to ask.  I say this because I could use help at times with things that are personal and I also would never ask for help from people I don’t know and trust.  I am lucky that now the Multiple Sclerosis isn’t bad enough that I need tons of help.  I am really not sure what I will do when or if I ever get to the point where I have to ask because I am not sure I will be able to bring myself to be able to do it.

Those are my thoughts on asking for help and having people help me.  I need to figure out how to ask for help and how to accept help because I am sure I will need to in the future and right now I feel like I have no idea how to do either.

Do you have a hard time asking for help?  How do you combat it?

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

MS Tuesday-Latest MRI & Update

MSI had an MRI the last Saturday in August and I just had my 6 month appointment with my doctor so I wanted to write a quick update.  I am sure most people aren’t really interested in these updates but I want to be able to look back later and see what has changed and this is the easiest way to record how things are now.

Anyway let’s get on to how things are for me now.  For the most part things are okay.  I mean I don’t feel good hardly ever but I am starting to think that this is my new normal and because of that I am not going to really complain about it.  I know things could be so much worse for me so I am trying to stay positive about everything.

My latest MRI showed that I am still stable and there are no signs that I am developing PML so I can still stay on the Tysabri.  Which for me is a great thing because it is the only thing that has ever kept me stable so for me it does work and I don’t know what I would do if I had to stop taking it.  I know that there are pills out now but they are still so knew that I don’t want to start on them until they have been out longer.

This is also the first appointment in years where we didn’t change any medications and we just are going to keep doing what we are doing and see what happens in the next few months.  The only real change is the fact that my doctor wants to start seeing me every three months now instead of every 6 months which isn’t a huge problem just more time-consuming is all.

So all is all I am still stable and nothing much is really going on so I can’t really complain about things now.  I have the MS Hug happen a few times in the past couple of weeks but it is hard to say that is what it is when it could also be my back injury so who knows about that.

If you have any questions or requests for something you would like to see please leave them in comments!

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

Something I Learned Last Month

Some Thing I Learned Last MonthThis week for the writer’s workshop I am going to write about something that I learned the last month.  I learned a few things but the one thing that sticks out to me is that ALS sucks.  I knew about ALS before the ice bucket challenge blew up but I really didn’t want to think about it because even before I looked into it more it still scared me.  I had the honor when I worked at a nursing home to take care of a patient for a couple of weeks who had ALS and that was the first time I knew anything about the disease.

Since the ice bucket challenge has been so big I wanted to know more about the disease and it truly scared me.  It is the one disease that makes me glad to have Multiple Sclerosis.  I mean it does still suck to have MS but in the grand scheme of things and problems that I could have MS is nothing.  I am so thankful that there are at least treatments that slow if not stop the progression of the MS so that I can hopefully have a great life and not end up in a wheel chair.

I can even imagine how scary it has to be to know what is going to happen and know that there isn’t anything or anyone who can stop it or even slow down the progression of the disease.  Not to mention what happens to you when you have ALS scares me as well because I think one of the scariest parts of the disease is to be all their cognitively but not being able to move or communicate with everyone around you.

I found a YouTube channel made by someone who is only 26 and was diagnosed with ALS.  It is even scarier for him because his grandma & his mom have/had the disease so he knows what he will be going through and like I have said throughout this whole post I can’t even imagine how scary that has to be.  If you want to check out his channel you can click here.

So that is the biggest thing I learned the last month.  What have you learned???

 

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Multiple Sclerosis Tuesday-My Current Thoughts & An Update

MS

I thought I would so another Multiple Sclerosis Tuesday post this week.  Instead of talking about anything in particular I would just write down some thoughts I have been having about MS and a little update on what is going on with me right now.

Lately I have hated the fact that diseases like MS even exist.  I have gotten to know so many people that have auto-immune diseases and it just piss’s me off to know that god lets people suffer like we do.  That being said I know it is in his plan for all of us and that he gave us these things because he knows we can handle them.  I know that it is true but I often wonder if at times we aren’t given more than we can handle anyway that isn’t the point of this post.

I also have been wishing that people would stop judging those of us who have MS and think we are lazy because we can’t really do much.  Now that being said I for the most part can keep up with anyone and if I don’t tell you I have MS right now you can’t tell.  Even my own family thinks I am lazy because when I get home from work all I want to do it take my bath and go to bed.  People don’t take the time to ask or even realize how much energy it takes for me to just make it through my work day.

As for an update on me nothing much has changed since my last update.  I am back to getting my headaches almost every day again but I thinking that is just a part of the MS for me.  Also my Psoriasis is back with a vengeance which totally sucks.  It isn’t really the fact that it itch it find I am more embarrassed but it than anything else.  I mean it does hurt if I find myself scratching it but other than that I can ignore it.  I am glad that I wear a jacket all the time at work because it just makes me feel self conscious about myself.

That is all for this post.  If there is anything at MS that you would like to know more about please let me know in the comments below and I will make sure I get it written for you.

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

Summertime & Multiple Sclerosis

Summertime

I am going to write about what summertime is like for me having Multiple Sclerosis (MS).  For those that are new or don’t know I live in Utah so it does get hot here in the summer and super cold in the wintertime.  We usually get into the upper 90’s slash low 100’s during the months of July & August and sometimes it can hot earlier than that.

Anyways now back to the topic at hand.  Those of us that have MS don’t do well in the heat.  The heat makes any MS symptoms we may be suffering from even worse than they usually are.  We also get super weak so we have to try and avoid overheating.    In this post I am going to give you some tips that I use when I am out shopping or at work to try and stay cool during the summer months.

The first thing  I do during the summer is try and not go out in the afternoon or early evening because that is when it is the hottest.  If I have shopping to do I try and get it done first thing in the morning so that I am not out during the hottest parts of the day.

The second thing that I do when I have to go out during the afternoon is try and park and close to the building so that I do not have to walk super far.  If I am with someone else and they are driving I will try and have them drop me off at the door and avoid walking through the parking lot.

The third thing I do is keep ice packs in the freezer so that when I am leaving work in the afternoons I can have it to keep myself cool.  My grandma thought of this one and I have to say that I loved it.  The exterior and interior of my car is dark in color so the inside of my car is always super hot after it has been sitting out all day so having an ice pack to put behind my neck while I am driving is a great way to keep my cool until my air conditioning in my car to cool the car down.

The forth thing that I do is leave my sun roof & windows cracked so that there is some air flow through the car.  This one can’t be done all the time because of the wind and things like that but I do try and do this one everyday because it also helps keep the inside of my car cooler on the super hot days.

Those are the top 4 tips I have for keeping cool in the summertime.  If you do anything different please let me know because I am always looking for other things to try.   Also if there is something about MS that you would like to know please let me know in the comments and I will make sure to write another post about it in the future.

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

MS Tuesday-Crazy Things I Deal With

MSI was reading this post last week and I loved how it described what some of this things that people Multiple Sclerosis go through and it made me want to list a few of the things that I deal with because of the MS.  I know that people who are around me don’t know what I go through most of the time because I am not the kind of person who complains or even talks about what I am feeling so I think this list will help others who are newly diagnosed to know that they aren’t alone.  So here goes the list:

  • Right now the number one thing I am dealing with is insomnia & extreme fatigue.  I wish there as a way to explain how it the fatigue I am experiencing is different from just a regular person feeling tired.  The best way to describe it that I can come up with is that it takes to much energy to even breath.  If I could stop breathing I would because it takes more energy than I have at that moment.
  • My fingers have been totally numb for about 6 years or so.  When it first happened it was scary because I couldn’t type or really do anything.  I taught myself to type and how to do everything that I used to do.  The reason that this bugs me is because there are somethings that I touch that I have to drop because I can’t stand how they feel on my fingers.
  • I get random shooting pains that come out of no where and go away as quickly as they came.
  • Headaches/Migraines: I have been struggling with these before I was diagnosed.  I am pretty sure that the migraines I get are part of my MS because they have never really said one way or another.
  • My legs just deciding that they no longer need to work when I am walking or when I go to stand up from sitting.

Those are the main things that I deal with on a daily basis.  I know there are more things but because of the whole lack of sleep and fatigue those are the only ones I can think of.

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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

So Frustrated!

So Frustrated

I got the idea for this post from a past writers workshop and I knew when I saw it that I had to write about it.  The prompt is: Something that frustrates you.  I knew I had to write about it because I find myself getting frustrated easily lately and I figured this might help me get the things off my chest and maybe even get over some of them.  Anyway here goes the list of things that are currently frustrating me.

  • Idiot drivers who refuse to use their blinkers before they change lanes.  I also am so tired of people cutting me off and then getting pissed off at me when I honk at them.  I guess I should just be okay with getting cut off and almost getting in a wreck.  I will try and remember that next time.
  • I answer the phones at work and I am so frustrated with people I work with not answering their calls and also never returning their voicemails.  I am so tired of getting bitched at by the customers who get pissed off because they are never getting calls back.  I understand the customers being pissed off but it isn’t my problem and I can’t make anyone answer their calls and/or listen to their voicemails.
  • I am frustrated that I can’t figure out how to make Elinore stopping pooping outside of the litter box.  I wish I knew what caused her  to start doing this let alone how in the hell I am going to make her stop doing this.  If you have any suggestions please let me because we are all at our wits end with her.
  • I am super frustrated with my health and not knowing what is going on.  I hate having Multiple Sclerosis because you never know what is going to happen and what the coming day will bring.  I am so tired of not knowing what is going to happen or not knowing what is really going on because there is no way to really know.

Those are a few of things that I am frustrated about right now.  I know there are more things but those are top 4 things that have me super frustrated right now.

Do you have any advice on how to deal with any of these?  What are you frustrated about right now?

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

MS Tuesday-A Few New MS Graphics

MS

A few months ago I posted this post where I simply posted MS graphics that I had found.  I have found a few more so I wanted to post them here because March is MS Awareness month.  I also hope to have an update on my latest MRI & doctors appointment post up next week.1911613_778454832182993_1319209662_n1794694_778452895516520_533254950_nmultiple_sclerosis_ms_hope_1_cards-r64b74515ab9f412fb4fa220d0c61028c_xvuak_8byvr_152265093_10151302215402144_843509339_n 1011886dc4248e884b5c8b10051e0fb4 1376317_773445469350596_1654535030_n b8c8b0c08b645328afe892abe351edd31378051_10202773142628323_1982290300_n 1235221_519386688174481_1567666107_n 1558558_510567469056403_1851535947_n

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