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.

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

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

Digiprove sealCopyright secured by Digiprove © 2014 Margaret Margaret

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.

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

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!

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

30 Things

1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: Either 2000 or 2001 I can’t remember what year to be exact
3. But I had symptoms since: Since I was in the 5th grade.
4. The biggest adjustment I’ve had to make is: Learning to just take everyday as it comes because I never know what the day will hold for me
5. Most people assume: That I am lazy and/or antisocial
6. The hardest part about mornings are: Falling asleep at 4:00 AM and having to get up at 6:00 AM.
7. My favorite medical TV show is: I don’t really watch any medical tv shows now that Discovery Health isn’t on the air.
8. A gadget I couldn’t live without is: My iPhone calendar
9. The hardest part about nights are: Being awake all night and/or being in pain.
10. Each day I take _10_ pills & vitamins. (No comments, please) This is only if I am not in pain.  If I am in pain it can be more like 15 or so depending on what I have to take
11. Regarding alternative treatments I: I am skeptical of them but depending on what it is I may be up for trying them.
12. If I had to choose between an invisible illness or visible I would choose: Invisible
13. Regarding working and career: I work full time and I have days where I wonder why.
14. People would be surprised to know: I don’t think I am have any secrets…
15. The hardest thing to accept about my new reality has been: Having people understand
16. Something I never thought I could do with my illness that I did was: I really can’t think of anything
17. The commercials about my illness: There aren’t any that I have seen
18. Something I really miss doing since I was diagnosed is: I don’t really miss anything because I have diagnosed for so long that this is my normal now.
19. It was really hard to have to give up: I haven’t really had to give up anything because I was diagnosed so young that everything is normal for me.
20. A new hobby I have taken up since my diagnosis is: Blogging and blog design
21. If I could have one day of feeling normal again I would: I would sleep
22. My illness has taught me: Not to judge a book by its cover and also patience
23. Want to know a secret? One thing people say that gets under my skin is: But you don’t look sick
24. But I love it when people: Take time to ask questions and understand.
25. My favorite motto, scripture, quote that gets me through tough times is: “You never know how strong you are until being strong is the only choice you have”
26. When someone is diagnosed I’d like to tell them: Knowledge is power
27. Something that has surprised me about living with an illness is: How many rude and selfish people are in the world
28. The nicest thing someone did for me when I wasn’t feeling well was: ????
29. I’m involved with Invisible Illness Week because: I want to raise awareness
30. The fact that you read this list makes me feel: Like you care and want to learn a little bit more about me.

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

MS Tuesday Multiple Sclerosis Hug

MS

I haven’t posted about Multiple Sclerosis for awhile because I really haven’t had anything new to write about but the past few weeks I have been experiencing what people call the Multiple Sclerosis Hug.  The first time I heard about it was a few months ago and now that I have researched it I think it may be what some of back pain has actually been this whole time.

Anyway lets get to what the MS Hug is a “band-like” sensation that feels like a tight strap or girdle wrapped around the torso area.  This is the best description of it I could find.  I have looked high and low for more information on this and anything else I could find about it and I am having no luck.  Which I am finding to be a pretty common this when it comes to some of the symptoms that I have been having as of lately.

That being said those that know about the medication I am on might worry that it could be a serious side effect of the medication I am taking and I can assure you it isn’t that.  I have felt these ways for years I just never put everything together.  I should have figured it all had something to do with the MS but since they come and go I usually forget about it after they pass.

I couldn’t really find any statistics on how often it happens but one site did say up to 75% of will experience pain but they don’t have one for how many people experience the MS Hug.  They say it cause by a lesion on the spinal cord that affects the muscles between your ribs.

I haven’t talked with my doctor about this yet  but I will be talking to her at the end of the month after I have an MRI so I will see what she recommends when it comes to treatment and things like that.  I did see there are a few medications you can take to try and help with it but I don’t think I will do anything for mine at this point because it does come and go.  Now if it ever sticks around for awhile I will for sure figure out some treatment options.

Is there anything you would like to know more about?  If so please leave a comment and I will write about it in the next few weeks!

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret