Life in the Autoimmune Lane

Posted By Michelle on August 16, 2010

I posted earlier about Cure JM having a chance at a $250,000 grant from Pepsi and we still do! Voting is open until the end of August. In July we were in 12th place and as of today we are in 4th. Woot Woot!!  The top two will each receive the grants.  This is so amazing, it is truly within our grasp if we all vote and pass along to our friends to vote too.  Will you please take a moment and text to vote, stop in at Facebook and vote and please ask your fb friends to do the same.  It is such a worthwhile cause, I know firsthand the pain and crippling effects this disease has and I can’t even imagine a child having to go through any of it.

To find out more about Juvenile Myositis and the organization Cure JM, check out the video and follow the links below to vote. Pepsi is giving us an amazing opportunity to help our kids with JM and we are so close! Thank you to all of you who are following this and voting. God Bless!

A message from the facebook group:

Thanks for making a difference by helping Cure JM move into 4TH PLACE in the Pepsi Refresh contest, where we are competing with over 400 organizations for a $250,000 grant.

We need to be in the TOP TWO at the end of August to win this grant. Every penny of this grant will go towards research, including an important JM genome study and a cardiovascular risk study in patients with JM. The remaining funds will go towards the Cure JM Program of Excellence research center in Chicago.

We would like to share a recent Facebook post from a JM family, who has played an integral role in the Cure JM Foundation:

“Know how I remember to vote everyday???….Inserting Mason’s feeding tube, giving the IV meds he needs this morning to keep him alive, plus the other meds used to strengthen his depleted bones, and the meds to lower his blood pressure so his enlarged, calcinotic heart will hopefully get better; replacing the pain patch…”

Please vote so that Mason and all of the children with JM can have hope for a better future. Vote THREE times each day, everyday to help Cure JM:

- Text Vote to Pepsi (73774) Type: 100850 to vote *(Stnd txt msg rts apply)
- Vote via FB app: http://www.facebook.com/l/0a580WbtmPvlJZ9FqZauzEfO3eg;bit.ly/CureJMonFB
- Vote for our entire “Kids to Win” team at: http://www.facebook.com/l/0a5806ZfUlE2jdhvEYHUpKnXhvA;pep.si/CureJMKidstoWin4

Sign up for Daily Voting Reminders (and be entered into a contest to win a FREE iPad if Cure JM wins!), please register here: http://www.facebook.com/l/0a580eNdDWUEzr_ZtywByGjqW2w;www.curejm.org (Note: Names and emails will NOT be shared with anyone and are only used for daily voting reminders).

Cure JM Partners in Pepsi Gulf Projects
These groups in the Gulf Projects category are heavily supporting Cure JM. Thank them by using your additional votes in the Gulf categories, which are completely separate from the “regular” Pepsi Refresh voting. Voting links for the three groups we have aligned with are as follows:

http://www.facebook.com/l/0a580W_EmhYhDIGCaajmFqVCDLw;gulf.refresheverything.com/homesofhope2

Category: Advocacy, Autoimmunity, Health, Life | No Comments »
Tags: Autoimmune blog, Autoimmune disease, Autoimmunity, Chronic Illness and children, Chronic Illness Blog, chronic pain, Cure JM, dermatomyositis, Facebook, facebook app, fundraising, Health, JDM, Juvenile Dermatomyositis, Juvenile Myositis, Make Juvenile Myositis a Memory, Pepsi, Pepsi Refresh Project, please vote!, research, research grants, social networking, video

Posted By Michelle on August 5, 2010

I am in the process of getting a new treatment this week. It’s called IVIg and it’s exciting and it sucks. When I say it sucks, it’s because I’m the lucky ’50%’ that the nurse said would get a killer headache. It’s the worst one I’ve ever had.   I am banking so much on this to give me some good days that I’m so afraid it won’t work. I’ve had two straight days of infusion, sitting in the chair for 7 hours praying. Today was the third and last day for this month and in true Michelle form, we overslept. Both of us. We got ready as fast as we could and jumped in the car.  Big C called the infusion nurse who told us it was too late (we would have been an hour late) she said she was alone today and if I came I would throw off the afternoon schedule. Sooo, I go back on Friday. Well, my body decided to go into full flare, and something else I’ve never felt before. The new ‘good’ cells must be in full attack mode of my bad cells.  I am red, head to toe, have the worst headache ever and hurt EVERYWHERE.

This is not a good post, not my best writing for sure.  I’m having a hard time seeing right now.  I just wanted to check in, let everyone know I’m still alive.  All my Facebook friends, I’m alive! I just don’t have the strength to even get on the computer.  It’s hurting my eyes. I’m missing talking to everyone!!  Oh and Miss M-you are so wonderful too!! I saw your comment on the picture from my phone. Love you!  Miss E-I got your postcard, thank you! I love you!! You know I’ve been really sick and out of touch when I’m using my blog post like an email….

I’m posting a video I found about a woman’s experience with her IVIG treatment while she’s getting her infusion.  It is not me in the video =)  I’ll be back after my ‘intermission’. I’m praying that tomorrow I feel human.

Taped From an IVIG Infusion Treatment from Stephanie Cion on Vimeo.

Category: Autoimmunity, Health, Life | 4 Comments »
Tags: Autoimmune blog, Autoimmune disease, Autoimmunity, Chronic illness, Chronic Illness Blog, chronic pain, dermatomyositis, flare, Health, pain, sick, whining

Posted By Michelle on July 24, 2010

Pepsi is hosting a contest and is giving away 250K to the winner! I’m supporting Make Juvenile Myositis a Memory by The Cure JM Foundation.  About 5,000 kids in the US are affected by this disease, putting it in the ‘rare disease’ category. But just because that number isn’t astronomical, doesn’t mean that they don’t need the funding. These kids are suffering with a painful, debilitation, potentially life threatening disease.

Here’s a video about Emma’s story with JM-

Will you please vote with me and help these kids have a chance at some research grants?  You can go to the Pepsi site and vote at http://www.refresheverything.com/makejmamemory and also on Facebook at the Pepsi Refresh Voting App. You can vote once each day on each site for this cause, but you get to vote 10 times in each day if you have other causes you support.  Thanks in advance, we really have a chance guys. We are in 12th place right now with over 1,000 applicants and there is 7 days to go! Please vote each day if you can.  Thank you!

Category: Advocacy, Autoimmunity, Health, videos | No Comments »
Tags: Advocacy, Autoimmune blog, Autoimmune disease, Autoimmunity, children, Chronic Illness Blog, chronic pain, dermatomyositis, funding, fundraising, Health, help, Juvenile Myositis, Life, Make Juvenile Myositis a Memory, Pepsi Refressh, rare diseases, research, research grants, sick, voting

Posted By Michelle on July 11, 2010

I don’t remember what that song was, just that one line. Actually it’s, ain’t nothing going on but the rent. Yup. July is going to be our tightest month. Oh, I hate tight. Tight makes stress levels higher than they would be otherwise. Money truly is the root of all evil, or at least the middle management of crankiness and arguments.

I am still waiting for my insurance to say yeah or nay to approving payment on IVIG treatment. Right now I’m treatmentless. Ha. Still on the prednisone, ugh. Still prednisone fat. It’s not even the belly that bothers me the most, although I do look slightly (ahem) preggers, but the under the chin thwaddle. Is that what it’s called? I’ve got buffalo hump, preg belly, and my chest size is astronimical (never thought I’d see that in this lifetime without surgery) but the one thing that I really can not stand

EVEN DENSE FACIAL HAIR CANNOT HIDE THE THWADDLE

is that dang fat that hangs out under my chin, extra neck. uck. I got off track there…

I had to stop taking my plaquenil, (hydroxychloroquine) because my eyes are really going. I kept telling my old rheumy that my vision was quickly failing me and he told me it was my age. He said I didn’t need eye exams, oh man. No matter how much you like your doc, always go with your gut! I didn’t. I just nodded my head and now my eyes are really bad. I am referred to an eye institute upstate, but they couldn’t get me in until next month. A few weeks ago I started seeing what I had heard people describe as an aura. The Nugget was playing in the kitchen and I was sitting there watching her and all of the sudden she had this glow around her shoulders. My daughter was talking to me and I guess I got a really scared look on my face because she stopped talking and said “mom! what’s wrong?” I couldn’t stop staring at her because I was looking at it right on and it was still there. You know how sometimes you see things out of the corner of your eye but if you turn your head it disappears? Well it didn’t go away and I just kept staring.  For a minute I thought I was seeing her aura until I started looking around and everything was like that. I had a moment where everything seemed surreal and it brought one one doozy of a panic attack.  It got worse until it was happening more often than not and I started fearing for my sight. I’d heard of plaquenil toxicity in the eyeballs but not any of the particulars. I stopped taking them when everyone looked double vision. I just wish the appointment wasn’t so far away.

Well, I started writing this post 2 days ago.  I keep falling asleep and taking up where I left off.  I think I say this often, but this is the sickest I’ve ever been.

I’ll be back when I can think of something positive and funny.  Positive!

Until next time

Category: Life | 4 Comments »
Tags: Autoimmune blog, Autoimmune disease, Chronic Illness Blog, chronic pain, grandkids, Health, Life, sick

Posted By Michelle on July 3, 2010

Have you ever happened on a blog, through a blog of a blog?  I was reading a blog one day and there was a comment from someone who had an interesting user name.  So, I clicked his link and started to read his blog.  Which brought me to his brother’s blog, which I became totally engulfed, engrossed and every other en-thing.  The thing is-it was so personal, all connected to family (all comments were from family and seemed to be the way they stayed in touch) and his life was literally, an open book.  I felt like I wasn’t supposed to be reading it.  Like finding your sister’s diary and opening it up and then slamming it closed.  Except I didn’t slam.  I kept on reading and ended up falling in love with the family. Proud pictures of mom’s smiling down on kids, footballs and team apparel worn proudly, wedding shots, silly photos, their life.

This family is a large mid-west fam with lots of patriotic pride.  They rode in the Patriot Guard.  These Guard are some of the most amazing people we have in this country.  They ride their motorcycles to funerals of fallen soldiers to prevent and block those insane protestors that show up at funerals and memorials to shout their thoughts about politics and war at families that are saying goodbye to their loved ones. The Patriot Guard are a wall that separates the crazies from the funeral service.  The more I read about the guard, the more I wished me and Big C had motorcycles so we could join.  I doubt if I could ride anymore, but I would ride on the back of C’s.  It would be an honor to be able to do such a wonderful, and sadly, such a needed thing.

So, I’m reading and reading.  I haven’t been engulfed in a blog like this since I can’t remember when.  Then a brother dies.  There are 5 brothers I think.  And the blog writer is devastated of course.  There are smiling family photos of all of the brothers together.  Lot’s of red,white, and blue.  They are the epitome of the All-American Family. Shots of family dinners. American flags, bowling trophies, kids playing with big toothy grins, brother’s hugging, husbands and wives smiling to the camera.   Then, his wife gets cancer.  She fights and fights and ultimately it takes her.  He is crushed. They have been together for years and she is his everything.  He gets into a motorcycle accident and loses some brain function.  He has to go to rehab.  Physical and cognitive rehab.  He is not the same person anymore.  His family take over the blog and write updates about him.  He goes from being a husband, father, Patriot, to someone who has some brain damage and isn’t the same.  He finally gets to get his own little apartment and can start doing some things for himself.  He starts posting a little bit, I don’t know him but I feel that I do and I cry and cry.  While he was in the hospital and the rehab, his family posted about his triumphs and pitfalls.  It is all there to see and I know he must have read it before picking up and trying to keep on blogging.  Life is looking up for him, but his memories of the way life was when his brother and wife were alive are overwhelming for him.  He will never be the same.

I can’t take it.  I’m crying and I don’t understand why life can just turn on a dime like that.  Then-one of his brothers, who is also a guard, leaves their mid-west home state and up and moves to California. To the shock and dismay of everyone in the family.  They are extremely close-knit, and probably no one has moved out and on.  He has his own blog, and most of it is written while he is drunk, but he is an amazing writer.  It’s like reading a book, you can’t put down.  He revels in his misery, and is really quite funny in the way that he sees his new life, in a big city, he is wit and charm and drunken sarcasm.  He is on a purposeful course of self-destruction.  But, he is so strong.  I don’t think he can let himself destruct.  He will stop drinking.

I know that this is all on the internet.  I know that it’s out there for all to see.  I still feel like I stepped right into the middle of their family tragedies and grief, like an invisible spectator.  Weird.  When California brother gets a comment from his ex wife and he is surprised that she wrote, he drunkenly responds and then tells readers not to read the next post.  And I didn’t.

I haven’t been back for a while.  It still feels weird to me to read their lives.  It’s too fresh, the pain is so vivid, and personal.  The whole reason this came to my mind this morning happened because I was typing something into the URL box and it picked up the first few letters of this blog and the title was hilarious and I clicked it.  It is the second blog of the Cali brother and I started to read again and had to shut it down.  I can’t read anymore of it.  I really want to know how the brother who had the motorcycle accident is doing.  I just can’t go back. This family that doesn’t know me, but I feel that I know them; I pray for them.  If I could do something that would give them peace I would.  Prayers is all I can do and I know that God listens.  He has proven that to me.

Have you ever found yourself reading a blog that made you feel as if you were an intruder into someone’s personal family business?  Did you bookmark it (like I did) and come back and read more?  Just curious.  It brings back the question, why do we blog?  To keep in touch with family and friends, to vent, to advocate, to reach out to people, loneliness, to make money?  I’m sure there are a million reasons why we do.  I don’t ever want to stop blogging. At times I’m absent and it’s all I can do to sit up and I’m thinking about this blog.  I can’t let it end.  Why?  I really don’t have the answer.

Enjoy today, you never know what tomorrow brings, joy or sorrow.  It’s all in the cards for us.  I’m going to keep writing.  It may not be good, but it’s my life.

Have a good Saturday before the 4th everyone.  Have a safe Independence Day.  Like I tell my kids (their grown now, I still call em kids) I thank God every day that I was born in this country. It is the Land of the Free.  I am so incredibly lucky

Until next time,

Category: Health | 2 Comments »
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