Invisible Illness Awareness Week

Invisible Illness Awareness Week officially kicks off today. I have been blogging about it throughout the month, and will continue to do so occassionally.

Today I am very excited to have my very first guest blogger!!! Margaret from "The World As I See It" has graciously agreed to blog about her Invisinle Illness, MS. Margaret and I are "bloggy" friends, and I'm so thankful to have met her! Thanks again, Margaret!

You look at my picture ( I am the one in pink) and you say she looks normal enough. After you spend a few months getting to know me you may begin to think I am lazy or unmotivated. You might think this because I don't go out after work and on the weekends. You may get mad if you ask me to do things and I am always saying no but what you can't see from just looking at me is that I have Multiple Sclerosis(MS).

MS is a disease where my own immune system attacks my Central Nervous System. I was diagnosed when I was 15 which at the time was really young to get diagnosed. The reason they found out was because my left leg would just stop working randomly. It would basically drag when I was walking around and would do it for no reason at all. After much pushing of the doctors they finally did the tests and told me I had MS.

I remember that day like it was yesterday. I was glad to know what was wrong with me but I also was scared to death. No teenager wants to find out they have a chronic illness and to top it off it is invisible at that. I am now 25 and still struggle on a daily basis because of this disease. I have tried almost all of the "safe" drugs that are out there for this disease. Right now I am on one that has major risks associated with it but for the first time in 10 years I am stable and that is an amazing feeling. This disease as various symptoms and it affects everyone differently.

Here a few common symptoms fatigue, problems with walking, numbness, tingling, slurred speech, tremors, stiffness, problems with vision, cognition, speech, and elimination. The summer time is a hard time of year for me because the heat just sucks what little energy that I have out of me. Women are more likely to get this disease but men can get it but it is rare. They have found that if people with MS take high doses of Vitamin D do better than those that don't. No is really sure what truly causes this disease either.

This week is invisible illness week so please before you judge people stop and talk to them because they too could be suffering with something you can't see! I want to thank Kerri for asking me to do this guest post. If you have any questions at all please drop by my http://margarettidwell.blogspot.com and I will be happy to answer any questions you may have!

Thanks again Margaret...God Bless you as you continue fighting this illness one day at a time!

Meet Me In The Stairwell

'MEET ME IN THE STAIRWELL'

You say you will never forget where you were when
you heard the news On September 11, 2001.
Neither will I.

I was on the 110th floor in a smoke filled room
with a man who called his wife to say 'Good-Bye.' I
held his fingers steady as he dialed. I gave him the
peace to say, 'Honey, I am not going to make it, but it
is OK..I am ready to go.'

I was with his wife when he called as she fed
breakfast to their children. I held her up as she
tried to understand his words and as she realized
he wasn't coming home that night.

I was in the stairwell of the 23rd floor when a
woman cried out to Me for help. 'I have been
knocking on the door of your heart for 50 years!' I said.
'Of course I will show you the way home - only
believe in Me now.'

I was at the base of the building with the Priest
ministering to the injured and devastated souls.
I took him home to tend to his Flock in Heaven. He
heard my voice and answered.

I was on all four of those planes, in every seat,
with every prayer. I was with the crew as they
were overtaken. I was in the very hearts of the
believers there, comforting and assuring them that their
faith has saved them.

I was in Texas , Virginia , California , Michigan , Afghanistan .
I was standing next to you when you heard the terrible news.
Did you sense Me?

I want you to know that I saw every face. I knew
every name - though not all know Me. Some met Me
for the first time on the 86th floor.

Some sought Me with their last breath.
Some couldn't hear Me calling to them through the
smoke and flames; 'Come to Me... this way... take
my hand.' Some chose, for the final time, to ignore Me.
But, I was there.

I did not place you in the Tower that day. You
may not know why, but I do.. However, if you were
there in that explosive moment in time, would you have
reached for Me?

Sept. 11, 2001, was not the end of the journey
for you . But someday your journey will end. And I
will be there for you as well. Seek Me now while I may
be found. Then, at any moment, you know you are
'ready to go.'

I will be in the stairwell of your final moments.

God

Serenity??

Serenity. Tranquility. Peacefullness. Even-temperedness. Cool-headedness.

Yesterday I was told I needed the Serenity prayer. I'm going to a counselor and yesterday was all about me and anger. I have been so angry lately. So easily overwhelmed.

Tim made a good point: If you have a scale of 1 to 10 on the stress in your life, most everyone wakes up with a zero. They don't wake up wondering if today they will be able to function. If they will be able to fold that basket of laundry or be able to take care of their child.

So when I get up, I'm already at a 6 or 7, just being me. Isn't that lovely. (Some of you who know me are going Mmmmmm-hhhmmm! I KNEW that girl caused stress!) Just kidding. But really, what he said made so much sense. If I seem to be jumping down people's throats at the drop of the hat, it's because the dropping of the hat was the proverbial straw that broke the camels back. That one last drop you think you can squeeze into the glass before it spills over.

But that drop...that one tiny drop that in and of itself is nothing! It's No. Big. Deal. Insignificant. Unless you are already so full of drops that one more just puts you over the edge. I am not an angry person by nature (well, not anymore!) I'm fun. I used to be fun, anyway. I like people. I want to be part of society. I want to in the mix, part of the group, ya know?

But many times I can't. And those are big drops added to my glass. So when the power lines are making lightning in my tree, and I'm setting up for a garage sale and my dog pees on something for sale....when Jacob is being particularly difficult and my TV freezes for the 13th time and my computer isn't working.....I overflow.

I need to focus on what I CAN do...and accept what I can't. And try to change what I can. ERGO, Serenity Prayer: (or the first part of it anyway)

God grant me the Serenity to
Accept the Things I cannot change, the
Courage to change the Things I can, and the
Wisdome to know the Difference.

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness



This is a questionnaire that many of my friends with chronic illnesses are filling out, so I thought I'd take my turn. I did something similar to this last year, but I changed some of the questions. This time I'm going to follow the "rules," and answer them all the way they are written. Or try to anyway!


30 Things About My Invisible Illness You May Not Know


1. The illness I live with is: Myasthenia Gravis


2. I was diagnosed with it in the year: 2003


3. But I had symptoms since: 1995


4. The biggest adjustment I’ve had to make is: Going from independent, working, and strong to dependent, disabled and weak


5. Most people assume: Either I can do anything or nothing.


6. The hardest part about mornings is: Just getting going. Sometimes I can't see well, sometimes I can't breathe well because I haven't done a breathing treatment yet...it takes FOREVER to get ready to go somewhere.


7. My favorite medical TV show is: Mystery Diagnosis for sure! Love it! I like almost all of them, IF they are accurate.


8. A gadget I couldn’t live without is: My computer. I have to have it, it has to work. Other than my cell pohone, it's really the only technological thng I have!



9. The hardest part about nights is: I have to sleep on a stupid wedge because I can't breathe lying on my back. I can't lay on my tummy because of the trach. In heaven, I will ONLY sleep on my stomach, I guarantee you that!



10. Each day I take __ pills & vitamins. 20+


11. Regarding alternative treatments I: go to the chiropractor, but please don't tell me about this herbal rememdy you know, or how much better I would feel off my meds. I can't take many herbal things because they will make the MG worse, and I've TRIED or been FORCED (when I was pregnant) to go off some of my meds and I almost die. SO no thanks.


12. If I had to choose between an invisible illness or visible I would choose: visible. I get SO SICK of the looks, judgements, etc. If I could I would wear signs, I would.


13. Regarding working and career: I used to obsess about working outside the home, but that desire is fading a little. I know that my most important jobs are wife and mother, homeschooling mom and daughter of God. That's a full plate already!



14. People would be surprised to know: I'm having a hard time with this one....So YOU tell ME if something about me surprises you!!


15. The hardest thing to accept about my new reality has been: not being able to work, being so dependent on others.


16. Something I never thought I could do with my illness that I did was: have my precious baby boy!!!



17. The commercials about my illness: non-existant. Hmm...that gives me an idea!



18. Something I really miss doing since I was diagnosed is: going away at the drop of a hat. No machines to take, no prescriptions to refill, no pages and pages and pages of medical notes.


19. It was really hard to have to give up: my independent life


20. A new hobby I have taken up since my diagnosis is: blogging!!!


21. If I could have one day of feeling normal again I would: Roll around on the floor with my son.



22. My illness has taught me: Not to judge. To be impatient. But most of all, how absolutely precious life really is.



23. Want to know a secret? One thing people say that gets under my skin is: But you look so good!



24. But I love it when people: ask me how I'm really doing no matter how I look



25. My favorite motto, scripture, quote that gets me through tough times is: Isaiah 55:8-9 "For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." This gives me comfort knowing that God is in control, and that He sees the WHOLE picture.



26. When someone is diagnosed I’d like to tell them: Life isn't over. It will change, for sure. But it can still be good. Find a support group pronto. Your family and friends may be super supportive, and that's great, but they can't 100% understand.



27. Something that has surprised me about living with an illness is: how much stronger I am than I ever thought I could be. To God be the Glory for that!



28. The nicest thing someone did for me when I wasn’t feeling well was: offer to take my child and let me rest. Bring dinner



29. I’m involved with Invisible Illness Week because: I'm all about education. I want people to understand that MANY people have chronic, invisible illnesses, and they are not alone.



30. The fact that you read this list makes me feel: AWESOME!!!

Comedy of Errors

So I just got done scrubbing the stick from flypaper from my neck, ear, and hair. Why, you ask? Because I was reaching for Jacob's butterfly cage, and forgot it was there. That's how I spent my first 30 minutes of "alone time" with Jacob and Doug out in the field chopping wood and collecting butterflies. Oh, dontcha just wish you could be me??


Here's kind of how the rest of the day went: (Remember that stress exacerbates my disease, and I've had arcing power lines for 4 1/2 days).


(This is like those TV dramas that show you the end of the program, then take you back to an earlier time and start over)....


Eight hours earlier...
At 8:30 this morning I called Consumer's for what I was determined to be the LAST time, and told them if they were not out here by noon I would be calling 9-1-1. They took a FOURTH work order, this being my SEVENTH call in FIVE days. They told mea truck had been dispatched. Yah. I've heard that one before.

OH….and my DIRECTV froze. AGAIN. So I called the repair guy who told me to call him directly if I had problems. We had problems all right. He had said he would be out between one and two.


Noon came and went…I even gave Consumer's an extra 10 minutes. No show. So, I called 9-1-1. Firemen from two different departments came out. Amazingly, a Consumer’s truck freed up within 35 minutes of the firemen’s request to come to my house and fix the arcing wires.

I was explaining to the firemen (oh my goodness they made me feel old. The first 2 here could definitely have been my sons! Even the 2nd lieutenant could have, probably.) They were all kind of like, okay lady, we’ll call Consumer’s for ya. THEN the wire popped three times in quick succession. They ran to the tree and looked for fire. I was like “MMMMMmmmmmmmmmm-Hm!” {You have to make sure you are sliding your head side to side from the neck only as you say this.}


They told me to shut my main breaker off until Consumer's came. All of the sudden I was like, CRAP! We have no power right now! I have to call off the DIRECTV repairman! So I called him again. Hopefully he will come tomrrow. We hav had NOTHIG but grief with this whole thing.

So Consumer’s came (about 35-40 minutes after the fire dept. called them) and fixed the popping and arcing. FINALLY. There originally were 3 wires, 2 of which were being compressed by the tree branches. They took those down, and replaced it with NEW wire, three strands twisted. By the time they actually started the "fix" it took about 25 minutes. Oh, I'm so glad I waited five days on pins and needles, on the verge of a panic attack waiting for this long, drawn out fix. RIGHT.


In the middle of all this, a gentleman who had stopped at our garage sale several times asking about a plastic children’s slide pulled into my driveway and came to the door. I was like, if this guy asks about the dang slide I’m going to kick him in the chops. This would be no small feat for the man was about 6' tall and looked like a very large linebacker. Nope. He wanted the plow truck. I had to call Doug at work. Again. He said fine, sell it for $x amount and keep the new engine. So Slide Man told me he’d be back in 30 minutes. That was over an hour ago. I had to dig up the keys and find the title to a truck we haven’t driven in 10 years. Nice.


I also had to call Apria this morning, because the new oxygen concentrator they brought me Thursday morning in exchange for the old one stopped working half way through the night. So not only am I dealing with all this garbage today, but it’s on poor quality sleep. Not enough oxygen. I just want to scream! But I don’t have the energy. (NO PUN INTENDED!)


Good thing Doug got home before the Slide Man turned Pickup Man came back, because I had gotten the wrong title out of the safe. See, I told you I didn't have enough oxygen last night!!


What a day. My nerves are so keyed up I could about puke. Give me a bottle of Oxygen, a fifth of Tequila and call me in the morning.

Consumer's Energy: You s#ck.

Dear Consumer's Energy,

I realize that you have a monopoly on power, and trust me, if I wasn't dependent on cool air, oxygen, a nebulizer and suction to live and breathe, I would tell you where to go and how to get there.

Friday morning, after a windy night, 2 power lines were very close together in my pear tree (that you were supposed to have cut down by now). Every time the wind blew, the power lines popped and you could see what looked like a bolt of lightning between the two lines. We were having a garage sale, and every time it popped people ducked. It sounded like gunshots.

I called at 9:19 AM. On Friday. The first time. Someone told me you would get somone out as soon as possible. Silly me thought that would be in a few hours. I called again 2 hours later. Yes, you had my report, and someone would be out soon.

I called 3 hours after that, and you even put in a second report, and ASSURED me that someone would be out FRIDAY yet. When no one had showed by 7:30 PM, I called again, and yet another customer service person assured me it would be "today," and said he was surprised that no one had been there yet! (You and me both buddy).

I did not sleep well Friday night, as you can imagine. I have a neuromuscular disease that requires me to keep my stress level at a minimum, and get plenty of rest. Thanks to you, my symptoms are exacerbated (oh, sorry, is that too big of a word?? They are getting worse).

Saturday morning I called at 9 AM. You would be there as soon as you had someone available. The wires continued to pop and arc. My second call Saturday did about as much good as the previous FIVE calls did.

Sunday, I didn't bother with you, because I really didn't want another lame song and dance, and it wasn't terribly windy, so I figured my house wouldn't burn down today.

Tomorrow (Labor Day) is supposed to be very windy, and yes, it is the last day of our garage sale.

What do I have to do to get someone out here? Get electrocuted? Call 911? Call the fire department? The media?

You are ridiculous. Your "service" is a joke. You can NOT tell me that in SIXTY hours, there has not been one truck available to come out and fix these wires. I am past irritated. I am past frustrated. I'm even passed scared. I am ANGRY. I am so angry. You don't give a crap if my house burns down and I think that's about the crappiest thing ever, because YOU are the only ones who could do a damn thing about it.

I will be contacting the person closest to God in your company, you can be assured of that. I will file a complaint with whomever I need to. I will do whatever it takes. You are a big company and act like you can just sh!t all over people. And you CAN! That's the frustrating part. We all need power.

May someone pee in your Wheaties, and may you experience the fear, frustration and anger that you have caused me.

Very,VERY Sincerely,

Your Less-Than-Number-One-Fan (but don't worry....you ARE number one on a different list I have!)

Finally Got Some Post-It's Out!

Invisibleillness.com is sponsoring the coolest thing. National Invisible Illness Awareness Week is September 13-19. The theme this year is "Each one can reach one." SO...we hit the town with our post-it notes. Here's me in the credit union parking lot checking out how this would work. I had a bunch of different saying on post-it notes, all with the website on the bottom.
This is actually the desk of the salesman we bought our new van from. He sold Doug his truck 15 years ago, and he is a Christian guy. He also has horrible chronic back pain. (So if you think of it, pray for Perky Knoll. Yup, Perky is his "real" name.) He wasn't by his desk, but saw us and came running...thought we were upset about something. So he let me put the note on his calculator anyway!

At Farm and Fleet, I put one on the 50lb bags of animal feed!

At Pamida (my favorite store in Allegan) I put one on the electric cart.

This is what it said:

Then I put one on the big box of a rocking chair.

I'm sure painters experience pain. Or know someone who does!

Many women are moms. If you're a Mommy and you have chronic illness, it can be tough! Invisibleillness.com can help!

It was really cool to put these all over town. I really hope that SOMEONE will go to the website because of a note they found. That would be awesome.

On a totally different note...It rained most of the day for our garage sale, but there are always a few die-hard garage salers. We keep praying tomorrow will be better! So I'm MIA, you'll know why!