Multiple Sclerosis – Page 6 – The World As I See It

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

September 18, 2013

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.

MS Tuesday Multiple Sclerosis Hug

August 6, 2013

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!

Weird MS Symptom

June 25, 2013

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?

Things That Drive Me Insane-Nurses

June 11, 2013

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???

Changes From Last Year To This Year

April 25, 2013

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?

Headache. . .

April 19, 2013

Yesterday I wanted to write about something that gave me a headache for the Writers Workshop but I already had a book review that had to be posted that day so I figured I would post this today. I wanted to write about this because I have had a headache for a month now in fact we are coming up on 2 months with the same headache. I can’t blame this headache on just one thing so I am going to make a list of things that I think are causing it.

The weather has been super crazy lately and it is always changing.
The fact that since it has been warmer some days my cats have started to shed and I am allergic to them. (This one is my own fault and I know it but they are my kids so I won’t get rid of them)
We are putting in new flooring in the living room, dining room & hallway. My girls usually sleep on the couch and chair in the living room but since it has been torn up they have been sleeping on my bed almost all night so that is putting tons more cat hair and what not in my room.
My Multiple Sclerosis medication can cause sinus infections and I am prone to have them as well. I am pretty sure I have a sinus infection but I know that going to a doctor for it isn’t going to do anything so I just take decongestants and wait it out.
Stress from work has also be huge problem lately as well.
I also have been eating too much gluten and I am paying for it big time. I will do really well some days and then other days and weeks all I want to eat is things that have gluten in them. I am being kind of stubborn and still eating things I know that will make my head hurt but I am tired of not having what I enjoy.
The final thing that has been giving me a headache is all of the reading that I have had to be doing because of all the book reviews that I have coming up in the next two months or so.

Those are the things that are causing this almost 2 month-long headache. I know there are probably tons of other things that aren’t helping as well.

What gives you a headache?