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.

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
http://www.sickofmg.blogspot.com

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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!

Sunday Stealing




Cheers to all of us thieves!
1. :::sniff, sniff::: Is the dog in the house?
Sad to say we don’t own a dog just 3 cats
2. What is the best piece of advice you’ve ever received?
I don’t usually listen to advice because I hate to be wrong if I don’t listen lol
3. What’s the worst experience you’ve ever had involving alcohol?
I hardly drink so I haven’t had any bad experiences.  Drinking makes people do stupid things so I hardly ever drink.
4. What’s the worst thing you’ve ever done to another person?
Not going to say!
5. Who do you think started the concept of memes?
Someone who wanted lots of followers
6. Give a song title or line that describes how you are feeling right now.
Welcome To My Life
7. What’s your favorite search engine? Yahoo!, Google, Ask, Bing? or something else?
Google
8. If Paul is the Cute One and John is the Smart One and George is the Quiet One and Ringo is the Funny One, which Beatle are you?
John
9. The democratic government decides that, not only do we have to share our money with people who choose not to work, we also have to share our children with those who do not want to ruin their bodies with being pregnant. Which child do you give up?
I wouldn’t have to give up any because I don’t want kids.
10. When should you procrastinate – now or later?
All the time!  I work better under stress lol
11. What is your favorite fast food?
French Fries
12. What was your favourite game as a child?
I didn’t play games because I hate to lose lol
13. Why terrible twos have to be terrible
They don’t it depends on the child. 14. Describe your favorite family member.
I don’t have a favorite member of my family
15. What does your favorite breakfast consist of?
Hash browns and scrambled eggs
16. What food is better the day after it was made?
Chili and Salsa
17. What was your last big purchase?
My Macbook
18. When was the last time you kissed someone and really enjoyed it?
The last time I saw pear
19. Why are there memes?
Because we run out of things to post about.
20. Described yourself using two words that rhyme. (i.e. fuddy-duddy)
fatty patty lol
21. If you were given the option of a “do-over” in life .. would you take it?
Nope-Everything I have done I have learned from
22. What movie makes (or has made) you cry? What touched you about it?
I haven’t seen a movie that has made me cry-A walk to remember was super sad but I didn’t cry when I watched it. 23. What is one big mistake that you did in your life? And what did you do to make it right?
Got pregnant when I wasn’t married and I placed her for adoption with her family.
24. When Life Gives You Lemons, What Do You Do With Them?
Eat them lol
25. How different are you in real life as compared to the online identity you have created for yourself?
Pretty much the same but I tend to have a bigger mouth online then in person.
26. Do you know what your parents would have named you if you had been born the opposite sex?
I have no idea and since my grandparents adopted me I can’t even ask my parents.
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