One

One

I chose another prompt from the Daily Post blog and the one I chose this time is:

If you could have a guarantee that one, specific person was reading your blog, who would you want that person to be? Why? What do you want to say to them?

When I read this prompt I knew I wanted to write about it but I wasn’t sure who I would want the one person to be.  I have sat and thought about it and I know who I wouldn’t want to read my blog but as for someone who would I am not so sure.

I don’t think I could just pick one person so I am going to change it to a group of people.  Even as I try and have it be a group of people I still have more than one so I guess I am totally breaking all the rules and just going to list 2 groups of people.

  • I wish young people who are getting diagnosed with Multiple Sclerosis at a young age like I did would read this blog.  I know when I was diagnosed it sucked that there was no one around me that was my age.  When we would go to events I was always the youngest person and I wish I would have had someone I could relate to.  It is hard to be 16 years old and be diagnosed with a disease that can’t be cured.
  • I would want book-worms to read my blog because I know before I got into reviewing books I had a really hard time figuring out what to read next and things like that.  I wish I would have had a blog or place to go where I would read reviews of books and a place to read about different types of books.

Those are the two groups of people I would like to read my blog because I think it would be interesting for them.  I am sure there are other groups that would like to read my blog but those are the 2 main groups that I would like to read it.

Who would you want to read your blog?

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Hi, My Name Is . . .

My Name Is . . .

This was a prompt from last weeks writers workshop and I had to write about it because it was such a fun topic and there are tons of things that could complete the sentence.  I think I am going to just list things that I am and then explain why on some of them.

  • Birth Mom-I placed my daughter for adoption when I was 20.
  • Blogger
  • Daughter
  • Mom to two crazy cats
  • Book lover
  • Introvert
  • Person who truly loves to be alone
  • Huge football fan-I will watch pretty much any game but I love the University of Utah & the Baltimore Ravens.
  • Suffer of an invisible illness-Multiple Sclerosis
  • College dropout
  • Blog Designer

Those are just the few things that came first to me.  I know I could go on and on with a list but no one has time to read that.

How would you answer the sentence?

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

My First Pregnancy

My First

This is another prompt for one of the writers workshop and I wanted to write about it because my first pregnancy was with my daughter who I placed for adoption when I was 20.  I wanted to write this more for me than anyone else and maybe one day my daughter will read this and she will have some idea of what it was like for me being pregnant with her.

When I found out I was pregnant I was about 6 weeks pregnant and so sick.  I had morning sickness so bad that I had to take an anti nausea pill almost every for most of the pregnancy.  I wasn’t one of the lucky ones where the morning sickness goes away after the first trimester.

My pregnancy was also harder I believe because I knew through the whole thing what the end was going to be.  I never thought I could keep her so I always knew that I would end up leaving the hospital empty handed.  I tried my best not to bond with her but anyone who has been pregnant before knows that you bond with your child because you are with them 24/7 for nine months.

Towards the end of my pregnancy my back was out and I just miserable.  I did end up going to the chiropractor because I wasn’t able to sit down or stand up without pain.  It took a few times but he did make my back better and I saw him through the end of my pregnancy and in fact I still see him from time to time.

My pregnancy wasn’t the best out there but it was terrible either.  One of the best things about the whole experience is the fact the my Multiple Sclerosis went into remission while I was pregnant so I didn’t have to worry about anything crazy going on with that but it got bad after I delivered and the hormones all dropped off.  I have been thinking about being a surrogate because I truly didn’t mind being pregnant and I would love to help people have their families.  I do know that I don’t think I will have anymore of my own children but like I said I would love to help out other people.

How was your first pregnancy?

If you want to be apart of the writers workshop you can click here and find out all about it!

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

Two Words

two words

This was a  prompt for the writers workshop or will be this coming week but I really wanted to write about it.  The topic is: If you could write a note to your younger self, what would you say in just two words.  If I only had two words that I could use I think I would have them say:

Don't Rush

I would chose these words because I was always in a rush to grow up and I wish now I would have just enjoyed being a child and not worried about growing up and how I wanted to be an adult.  I find it funny now as adults everyone say’s not to rush growing up and enjoying being a child but we all know that every child wants to be an adult.  I know when people told me to enjoying being a child I just laughed it off because being a kid seems to suck when you are younger.  I wish I would have enjoyed more of the few good years of my childhood that I had before things changed again and this next phrase is something I wish I could tell my younger self:

It Gets Better

Because I really needed to hear these words while I was in school and recently diagnosed with Multiple Sclerosis.  I still remember how hard it was to come to a realization that the MS was never going to go away and in fact it could get worse than it already is.  It is a hard pill to swallow that at a such young age you have a disease that will never go away and you don’t know how it will end up affecting you.

What two words would you write to a younger you?

If you want to be apart of the writers workshop you can click here and find out all about it!

Digiprove sealCopyright secured by Digiprove © 2013 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.

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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!

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.

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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!

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

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?

Digiprove sealCopyright secured by Digiprove © 2013 Margaret Margaret

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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