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- Sayings & Graphics

MS

 

I follow several different MS Facebook pages and I am always seeing fun sayings and graphics for MS and I wanted to post them here so that I would always be able to find them if for some reason I needed them.  Here are ones I have found so far.13007_573022382726240_703674569_n 64678_10150599952098644_325823235_n 150732_10150816700128876_1282210341_n 182132_3894233866986_1036569138_n 198268_10150904742058876_1731190783_n 229312_10151077643763876_691997354_n 249622_10151048123948876_169396041_n 301538_584809928196525_860027000_n - Copy 302715_4350658837325_354717230_n 379295_4902877362443_187908437_n - Copy 404100_10151051808478876_2031454144_n 481135_10151004711758876_564571436_n 482354_582456875116124_388336461_n 535065_10150704164078876_53733744_n 545863_10151054197128876_267688931_n 557012_10151071931953876_1247509596_n 564713_10151056941673876_2006935935_n 603311_10151055490498876_1670670639_n b4fd75778be11ddbbd0d8118b86e77f8 il_fullxfull.183021016 images Mult multiple-sclerosis-ribbon

 Do you have any that you like?

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Things That Drive Me Insane-Insurance Companies

Things That Drive Me Insane

 

I am sure everyone knows that I have Multiple Sclerosis and because  of the medication I use to treat it I have to get MRI’s every 6 months. I had my latest MRI on Saturday the 16th of February.  I received a call on the Friday before my MRI from my health insurance company and all I could think was great now what is their deal.

For a little back story I have always had problems with insurance companies.  It always seems like since they have to pay out for me they tend to give me the run around and what not.  One time a few years ago I actually had an insurance company make everyone that they paid money to send the money back to them and then I had to fight with them in order to get them to pay for the claims that they requested the money back for.  Lets just say that fixing the mess took over a year and I am still sure I paid to much on a few of the claims because I just got tired of fighting with them about it all.

Anyway back to the story  when I answered the phone they basically wanted me to change the place of my MRI because the place I was getting it done at wasn’t one of their preferred providers.  I was dumbfounded because  I was having the MRI the next  day and I know enough to know that there is no way that there would be an opening on a Saturday to get a MRI if most places even do MRI’s on Saturdays.

I understand why they called about it but they didn’t have to give me hard time when I told them that I was okay with paying more because my doctor works out of the hospital and it is easier for me to keep track of my records and what not if everything is done in the same spot.  I get that they want to save me money but if I am okay with paying more than they really should just say okay and get off the phone.

I am glad they were trying to save me money and everything but in the end if I am okay spending more money then just leave it alone.  I may spend more money for the MRI but it means that I don’t have to worry about my doctor getting the results or anything like that because she will be able to just pull them up in the computer.  I have had the scans done at other places before and it always turns into a big hassle when it comes to getting the results and things like that.  So that is the latest thing that drove me insane.

What is driving you insane this week?

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Mulitple Sclerosis Update

Mulitple Sclerosis UpdateIt has been quite awhile since I have written and update about Multiple Sclerosis and what has been going with that.  I had an MRI at the end of August and it showed that I am still 100% stable which is amazing for me.  The MS has always been very active in me so that fact that I have been stable for about 4 years or so now is huge for me.  I know it has everything to do with the Tysabri and that makes it all worth it for me.

While I was at my doctors appointment she asked me is I wanted to get tested for the JC virus, which for those people who don’t know it is what cause people on Tysabri to get PML.  I told her no because I won’t stop taking Tysabri so I really don’t want to worry about it if I do have the JC virus.  She did tell me that if and when I do have another relapse I will have to get the test done to rule out that  I haven’t developed PML.  My chances of developing it now that I have been on it for about 4 years is really low so I am not worrying about it all.

Other than that there hasn’t been any changes.  I still have ups and downs when it comes to how I feel and things like that but that is pretty normal.  So there isn’t much else I can say.  I am stable and doing pretty well.

If you have any questions please let me know!

MS Resources

This week I decided that I would post some Multiple Sclerosis resources that I have found and that I use on a regular basis.

Tysabri
Avonex
Now I am sure there are ones I haven’t listed or haven’t found so if you have one you like please leave it in a comment and I will update this list with them.
Digiprove sealCopyright secured by Digiprove © 2012 Margaret Margaret