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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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?

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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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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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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.

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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!

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Weird MS Symptom

MS

It is time for another MS Tuesday post.  I haven’t done one of these in a while because I haven’t had anything to talk about when it comes to my Multiple Sclerosis (MS).  Like I have said before if there is ever anything you want to see in one of these posts please let me know and I would be more than happy to write about it.

Anyway today I am going to write about a weird feeling I had the last week.  I am not sure if I have ever written about the very first MS symptom that I had but this post will ties into that.  The first symptom that I know was the MS was when I was in high school and my left leg started to drag at random times and it just wouldn’t work.  I can remember going to see doctors about this and everyone thinking we were making it up but long story short this was the first time I realized that something was wrong.

So last week I had a really weird feeling in my left leg.  The best way I can describe it is by saying it felt like it was going to give out while I was walking.  I haven’t felt anything like that before and I hope I don’t ever have to feel it again.  My leg never did give out but it felt like it could at any moment.  As I write it down I guess a better way to describe it would be weakness in my leg.

The medication that I take for the MS can cause you to get a condition called PML and the signs of that can seem like an MS relapse. So my doctor tells me that if I have any weird things going on that last for more than a day to call her and they will get me in to make sure that I am not getting PML.  Thank god the feeling was gone by the next morning so I  can just chalk it up to a random MS symptom.  I am for sure going to tell her about when I see her in September after the MRI I have scheduled at the end of August.

Other than that I have been totally stable and haven’t had anything other than the headaches but I have had them for as long as I can remember so I forget most of the time that they are even there.

How have you been doing?  Is there anything about MS you would like to know?

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Things That Drive Me Insane-Nurses

Things That Drive Me Insane

This time for things that drive me insane I am going to talk about my latest infusion and how bad one of the nurses there was.  The thing that made me the maddest about the whole situation was the fact that she was a supervisor.  Anyway lets get onto the story.  I am sure you all know that I have Multiple Sclerosis and that I take Tysabri once a month to keep me stable.

So once a month I go to the hospital and get an IV in my arm so I can get the medication.  The best way to describe how the give it is to say they give it like they do Chemo or when you have a blood transfusion.  So usually they get the IV started with just one poke but this time it took 3 times.

Now if the only problem was that I took three times to get the IV started I wouldn’t be so pissed about it but the second time they poked me it hurt like hell and here I will show you a picture of the bruise that formed:

Things That Drive Me Insane-Idiot Nurses

This was taken 5 minutes or so after I got home from getting my infusion done.

This bruise was already forming before she pulled out the needle because she couldn’t find the vein.  I don’t think I have ever had a nurse dig around so much trying to get the vein.  She was digging around for a good 2 to 3 minutes and still couldn’t get it.  She then had to poke me for the 3rd time and thank god she got me then because if she hadn’t I wouldn’t have let her poke me again.

Here is what the bruise looked about 4 or 5 days latter:

IMG_0286[1]

What the hell is up with the straight lines????

Let me just tell you I have never once seen a bruise like this.  The fact that there are straight lines is so weird and everyone that see’s it says the same thing.  I ended up having to go to the hospital and get blood drawn because she messed up and my blood test came back weird so they want to make sure that it everything was okay.   Oh and this bruise still hurts and I bet even when the bruise goes away I will still have pain because I believe she went into the muscle and did some damage.

I pray to god that when I go back for my next infusion that she won’t be there because I hate making scenes but there is no way in hell that she is ever going to get another needle anywhere near me.  I have another Idiot Drivers coming up next week.

Has this ever happened to you???

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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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