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

30 Things About My Invisible Illness

I was going through the drafts of posts that I have and I found this questionaire.  I am pretty sure I got this last September during Invisible Illness week and for some reason I never filled it out and posted it.  I figured I would fill it out now and compare it to the one I did a few years ago.  If you want to see the other one click here and it will take you to it.

1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: 2000 or 2001 I believe
3. But I had symptoms since: I was in 5th grade
4. The biggest adjustment I’ve had to make is: Realizing that I have to slow down and pace myself.
5. Most people assume: That nothing is wrong with me and that I am just lazy
6. The hardest part about mornings are: Getting up if I have been up most of the night or if I am in pain
7. My favorite medical TV show is: I don’t really watch any of these since they took Discovery Health off the air in my area.
8. A gadget I couldn’t live without is: My computer & my cell phone calander
9. The hardest part about nights are: Falling asleep and staying asleep.
10. Each day I take __ pills & vitamins. (No comments, please) 7 everyday and then maybe 3 or 4 more depending on pain that I am having.
11. Regarding alternative treatments I: Really want to try acupuncture but I don’t have the money to try it right now.
12. If I had to choose between an invisible illness or visible I would choose: Visible
13. Regarding working and career: I currently work as a receptionist and I also design blogs but I had to quit my job in the medical field because of it.
14. People would be surprised to know:That  my hands are numb and I had to reteach myself to type.
15. The hardest thing to accept about my new reality has been:Knowing that I can’t do the same things other people my age do and also knowing the people get scared off when they find out I have MS
16. Something I never thought I could do with my illness that I did was:I can’t really think of anything.
17. The commercials about my illness:I haven’t really seen any commercials about MS
18. Something I really miss doing since I was diagnosed is:Since I have had it so long I don’t really miss anything because I have been dealing with this for years now.
19. It was really hard to have to give up: It has been hard for me to stop eating gluten because I love bread.  I didn’t find out that I couldn’t eat gluten till about 5 years ago but when I don’t eat it my MS does so much better.
20. A new hobby I have taken up since my diagnosis is: Since I have had MS for so long I haven’t really picked up anything new other than design blogs and blogging.
21. If I could have one day of feeling normal again I would: There isn’t anything I  would do differently than what I do now.
22. My illness has taught me: Is to slow down and enjoy the little moments
23. Want to know a secret? One thing people say that gets under my skin is: “I am sorry” or “That has to be hard”
24. But I love it when people:Don’t judge and take the time to listen and learn about MS.
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:Do your research because knowledge is power!
27. Something that has surprised me about living with an illness is:How shallow and rude people are and can be.
28. The nicest thing someone did for me when I wasn’t feeling well was:Just be there
29. I’m involved with Invisible Illness Week because:I want everyone to learn about invisible illnesses
30. The fact that you read this list makes me feel:Good because it means that you are willing to learn and you are judging.

Digiprove sealCopyright secured by Digiprove © 2012 Margaret Margaret

30 Things About My Invisible Illness

 I know that Invisible Illness week is over but I wanted to fill this out so that I can update my MS page.
1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: I believe it was 2000
3. But I had symptoms since: I was in elementary school
4. The biggest adjustment I’ve had to make is: Not getting upset if I can’t do everything I want to because I am having a bad day.
5. Most people assume: That I am just lazy because I don’t do much after work.
6. The hardest part about mornings are:  Getting up when I have only had a few hours of sleep.
7. My favorite medical TV show is: I love everything in Discovery Health but they got rid of it because of the OWN network.
8. A gadget I couldn’t live without is:  My cellphone that keeps all of my appointments.
9. The hardest part about nights are:  Being exhausted and not able to sleep.
10. Each day I take 5_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:  I wish I could afford to do acupuncture because I hear that it really does help people.
12. If I had to choose between an invisible illness or visible I would choose:  I would want a visible one
13. Regarding working and career:  It is hard for me to go to work everyday because of lack of sleep and not feeling well but I have to work so I can have insurance even though we all know that insurance companies don’t pay anything.
14. People would be surprised to know:  That my hands are numb and I had to reteach my self to type.
15. The hardest thing to accept about my new reality has been: I can’t think of anything because I have had this disease so long.
16. Something I never thought I could do with my illness that I did was:  I have tried to not let the MS keep me from doing things.  I do everything that I want to.
17. The commercials about my illness:  I actually haven’t seen a commercial about MS.
18. Something I really miss doing since I was diagnosed is:  I miss not having energy.
19. It was really hard to have to give up:  I don’t feel like I have given up much because I have had this disease so long now and was diagnosed so young that it is just a part of who I am.
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 am not sure what I would do.  I can’t imagine life without MS.
22. My illness has taught me: To live everyday to the fullest because you never know what your last day is going to be.
23. Want to know a secret? One thing people say that gets under my skin is:  When they say they are sorry that I am sick.
24. But I love it when people:  Take the time to learn about MS.
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 option you have.”
26. When someone is diagnosed I’d like to tell them:  To learn all you can about the condition because knowledge is power.  I also tell them that they are in charge of their condition and if a doctor wants them to do something that they are not comfortable with they need to kind a new doctor.
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:  Because I want to raise awareness about MS and any other invisible illness.  I know how hard it is for me to deal with people who don’t understand invisible illnesses.
30. The fact that you read this list makes me feel: Good because it means that people are reading my blog!
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A Friends Prespective

HELLO, MY NAME IS MISTI AND I WAS ASKED BY MARGARET TO WRITE A LITTLE SOMETHING ABOUT HOW I SEE HER MS AFFECT HER DAY TO DAY LIFE.  I HAVE KNOWN MARGARET FOR SOME TIME NOW AND TO BE HONEST WITH YOU WHEN I FIRST MET HER I HAD NO IDEA THAT SHE EVEN HAD MS UNTIL SHE OPENED UP TO ME AND TOLD ME ALL ABOUT IT. I HARDLY KNEW ANYTHING ABOUT MS AND WHAT AFFECTS IT HAD ON PEOPLE. IN THE PAST I KNEW A COUPLE OF PEOPLE THAT HAD BEEN AFFECTED BY MS BUT I NEVER KNEW THEM PERSONALLY SO I WAS NOT FULLY EDUCATED ON THE MATTER. MARGARET WOULD TELL ME HOW TIRED SHE WAS AND HOW SHE WAS HAVING A HARD TIME DOING SIMPLE THINGS. AT FIRST I COULD NOT UNDERSTAND WHERE SHE WAS COMING FROM AND HOW IT REALLY MADE HER SO TIRED. BUT WITHIN A COUPLE OF MONTHS OF REALLY GETTING TO KNOW HER AND SPENDING ALOT OF TIME WITH HER I COULD DEF SEE WHERE SHE WAS COMING FROM AND HAD A WHOLE NEW OUTLOOK ON IT ALL AND A BETTER UNDERSTANDING. I TRULY FELT BAD AFTER BECAUSE OF THE WAY I FIRST WAS THINKING. IN MY MIND I COULD NOT SEE HOW SHE WAS SO TIRED AND HOW SHE NEVER WOULD DO ANYTHING AFTER WORK OR HARDLY EVEN GO OUT ON THE WEEKENDS. BUT AS TIME WENT ON AND I GOT CLOSER TO HER AND WHEN HER AND I WOULD GO OUT I WOULD SEE HOW MUCH IT TOOK FROM HER AND HOW MUCH IT DRAINED HER. THE SIMPLEST THINGS AND THAT REALLY SADDENED ME TO NO END. SOMETIMES HER AND  I WOULD GO OUT ON A FRI NIGHT AFTER WORK AND THAT WAS THE HARDEST FOR HER BECAUSE OF BEING AT WORK ALL WEEK LONG. SO THE REST OF THE WEEKEND SHE WOULD BE DOWN AND TIRED TRYING TO CATCH UP SO SHE COULD MAKE IT THORUGH THE NEW WORK WEEK. I NO LONGER GOT UPSET IF SHE DID NOT WANT TO DO ANYTHING INSTEAD I STARTED TO FEEL SO VERY BAD FOR HER AND WISHED THAT SHE FELT WELL ENOUGH TO GO OUT. ITS NOT THAT SHE DOES NOT WANT TO DO THINGS SHE HAS NO STRENGTH NOR ENERGY TO DO SO. SHE IS SO YOUNG AND ALL SHE CAN DO IS DO WHAT SHE CAN TO GET TO WORK AND THEN THE WEEKENDS LAY LOW SO SHE CAN DO IT ALL AGAIN THE NEXT WORK WEEK. I HAVE TO GIVE HER TONS OF CREDIT SHE SURE DOES TRY AND SHE SURE DOES TRY AND PLEASE EVERYONE EVEN IF THAT MAKES HER SICK. HER AND I HAVE A UNDERSTANDING NOW AND I TRY TO HELP HER OUT AS MUCH AS I CAN. IT MAKES ME VERY SAD TO SEE HER GO THROUGH SO MUCH AND HAVE TO LIVE WITH THIS. I HAVE EVEN WENT TO SOME OF HER INFUISIONS WITH HER AND AFTER THEM SHE IS REALLY SICK. IT BREAKS MY HEART AND I LOVE HER WITH ALL OF MY HEART. SHE IS A WONDERFUL WOMAN THAT IS SWEET AND TRYS TO HAVE THE STRENGTH AND ENERGY, BUT CANNOT BECAUSE OF HER MS. I WISH THAT MORE PEOPLE WOULD BE MORE OPEN MINDED AND GET TO KNOW HER FIRST BEFORE THEY JUDGE HER. PEOPLE SHOULD NOT ASSUME THINGS BEFORE THEY KNOW THE FACTS!!!!!!!!

Guest Post Friday-Depression

This video is super touching and funny enough it spoke to me today.  Melissa didn’t know I needed to hear this but I truly did need to hear this.  I hope that this can help others as much as it helped me.  I am going to post this on the top for awhile.

Invisible Illness Week-Lyme Disease

Today’s guest post is one that I was super excited about.  She is a very strong women even though at times she may not feel like it.  Watch her vlog and then drop by her Lyme Blog and learn more.  If you take the time to get to know this lady you will see how strong she really is!  Enjoy!

Kerri & The MG



Editors Note: Kerri is an amazing person and I love to read her blog because we may not have the same illness but we are both sick and struggle day to day because of the disease we have.  Everyone should follow this lady because if she can make it through her days then so can we all!

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I am so pleased to be writing a guest post for The World As I See It!  Margaret is a good “bloggy” friend, and we have a lot in common.  So thanks, Margaret, for asking me to do this!
Margaret and I both have “invisible” illnesses.  I have a neuromuscular disease called Myasthenia Gravis (MG).  Some of the symptoms I have include lots of trouble breathing, double vision, difficulty swallowing, speaking clearly, and overall muscle weakness.  The type of MG I have is MuSK+ MG.  There are about 7 people in a million who have the same thing. (And here I thought I was one in a million!)
I wasn’t officially diagnosed until 2003, but I had symptoms starting as early as 1995.  To look at me, all you might notice is that I have a trach.  Not all people with MG do, but I had complications, and my vocal cords were scarred.  I need the trach to breathe through.
Many people see the trach and assume that I had cancer or something; they have no idea what I go through on a daily basis.  My disease is, for the most part, invisible.
The worst part about that is when people look at you and you know they are judging you.  I am overweight, partly due to many of the medications I have to take.  My husband (who is very healthy, thank the Lord) and I park in handicapped, because when I get to the store I may look okay, but by the time I’m done, I may barely be able to put one foot in front of the other.
But people just see an overweight, lazy person who is taking a good parking spot from someone who really “needs it.”  I try not to let it bother me, but it’s hard.  Some days are worse than others.
Imagine that when you wake up in the morning, you have a pocket full of change.  Every day it’s different, and you won’t know how much you’ll have until you get up.
So one morning I may wake up and have 43 cents in my pocket.  Getting up, getting my son up, getting breakfast for both of us, making my coffee and getting him dressed takes at least 13 cents.
There are 2 loads of laundry to be done.  That’s 25 cents gone. That leaves me a nickel, and I still have to take care of my 4 year old all day, homeschool, take care of our 3 dogs, do the dishes, feed my son and myself lunch, do the bills, write my blog….You see where I’m going.
The next day I may only wake up with a dime.  Those days are the hardest.  My son only knows me the way I am.  He knows I am different than other Mommies, but he’s not sure why.  To him, I look pretty much the same as other Mommies.  I probably look “normal” to you too.
But on the inside…on the inside, it’s tough.  It’s isolating.  It’s frustrating.  It’s heart breaking.
So next time you a mother and young child on a train, and she can’t “control” her child, understand that it’s a miracle she and her child are on the train at all.
Next time you are in line behind a slow, grumpy man who is getting on your nerves, know that he has chronic pain that the doctors can’t fix, and he hurts all day long.
When you see the overweight, middle aged woman who has a nice haircut and make-up on shopping, but parking in handicapped, appreciate that it took her 2 hours to do her hair and make-up because she is so weak she has to rest every 60 seconds.  But she still wants to look pretty.  On the inside she is the same as you.
Try not to judge.  There may be so much more going on than you could ever understand.
Kerri

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MS Tuesdays

This week is invisible illness week.  I am going re-post my story so that people can read it that maybe didn’t get a chance to read it the first time.
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First I am going to post some helpful information before I post my story so that you will be able to follow along a little bit better.
  • Multiple Sclerosis is what they call an autoimmune disease.  This means that the person immune system for some reason decided it is going to attack so part of the body that it shouldn’t attack.   In MS the immune system decides it is going to attack the nerves of the CNS (central nervous system).  They are not sure what triggers the immune system to think that part of the body is a invader and needs to be attacked.
  • There are a lot of different symptoms that go along with this disease.  I am going to list some of the most common ones: Fatigue, problems with walking, numbness, tingling, slurred speech, tremors, stiffness, problems with vision, cognition, speech, and elimination.  Every person with MS has different symptoms.
  • Anyone can get MS.  Women are more like to get it than men and so are people with a lighter pigmentation to there skin.  So Montel Williams who has MS is a real rarity.  They think MS has a genetic link but they aren’t sure what it is.  In my case there is no one in my family history of it.  You usually get diagnosed between the ages of 20-50.  I was a rarity and was diagnosed at age 16.  Although younger patients are now getting diagnosed because doctors are starting to look for it at a younger ages.
  • MS symptoms happen when the immune system attacks the myelin around the nerves.  If you think of your nerves like a wire the myelin would be the protective covering around the wire.  If the nerve underneath the myelin gets hurt that is what causes the symptoms and some times permanent disabilities.
  • The body tries to repair the damage that is done but it is never the same the the nerve never really functions the same.
  • MS is rarely fatal.  Most of the time people with MS with get a common cold of the flu and that is what will end up taking their lives.
  • There are several treatments out there that each do things differently.  I am on one called Tysabri and it is the most expensive and most dangerous of the drugs.  All of the current MS treatments are expensive and it makes it hard for people like me who have the disease to get the treatments that they need.  There is always new treatments in the works and exciting things happening in research that hold so much hope for future generations.
  • There is currently no cure for MS.

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My Story

I began to get sick when I was in 10th grade.  The first really symptom that I can remember is my left leg started to drag.  It would just stop working at random times.  I can remember in gym class that year we had to run the mile for a grade and I did my best but I was going to fail the class because I could run it fast enough because my leg was dragging.   We went to the doctors and lets just say the only reason they did an MRI was because my grandma pushed for it.  When that came back they called us in because they needed to talk to us.  They said that there was what they call lesions on the brain.  They show up as white spots on the brain.  They told us that they needed to do a spinal tap to rule out MS.

The spinal tap in and of it self was a huge ordeal to say the least.  I got the spinal tap on a Thursday and by Saturday I was so sick.  I had a huge headache and was throwing up.  So we went to the ER because it was obvious that my spinal tap hadn’t sealed.  When we got the ER they made me lay in the waiting for about an hour until they took me back to a room.  After they knew what was going on they wanted to send me home because the guy that could fix it was on call and he didn’t want to come and do a blood patch.  He finally came in after my grandparents raised a living hell because I could have died if I didn’t get a blood patch ASAP.
When the results of the spinal tap came back they called us in again and told my and my grandparents and I had Multiple Sclerosis.  They wanted to start me right away on Avonex.  I don’t really remember much of the next couple of months.  I think I was still numb to the whole situation.  What I do remember is how sick the medication made me every weekend.  I took the shot on Friday nights and spent the whole weekend with flu like symptoms. I stopped taking that medication after awhile and started on Copaxone.  With that one I had to take a shot everyday and that didn’t last very long either.
I was pretty stable and not much went on until a year ago and that is when my hand went numb and it got hard to do anything with them.  Slow I have been able to use them more but it feels like they are asleep all of the time anymore.  I started on Tysabri about a year ago and so far it has worked the best but I also has a major problem with it as well.  You can develop a condition known as PML that will basically make you a vegetable.  They are finding out that the longer you are on the drug the higher your chances are of getting this serious condition. I am not sure how much longer I will be on this medication but I don’t have any other options right now.
That is my story in a nutshell.  If you have any other question feel free to ask me I will answer any questions that you may have.  

Invisible Illness Week

This week is invisible illness week.  I have a chronic but invisible illness.  People that don’t know me tend to think I am just lazy or a bitch.  I wish that people would take the time to get to know me before they judge me.  If you don’t have an invisible illness you don’t know what it feels like for people to not understand that there is a reason I am like I am.  Here are some stats that will shock you.  I know they did me!

  • Nearly 1 in 2 Americans (133 million) has a chronic condition
  • 96% of them live with an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy.
  • That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million. Chronic Care in America 
  • Sixty percent of the chronically ill are between the ages of 18 and 64. 
  • The divorce rate among the chronically ill is over 75 percent 

I got these stats from:http://invisibleillnessweek.com/2009/05/06/statistics_chronic_illness/.

There are so many different types of invisible illness.  This week I am having some great guest posters post about their invisible illnesses.  I will post my story on Tuesday and then the other days I will have some amazing women post about their struggles with their invisible but chronic illnesses.  I hope everyone can learn from these lady’s and be a little more excepting of others!