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Month: July 2010

Make Juvenile Myositis A Memory!

Make Juvenile Myositis A Memory!

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!

Nothin goin on but the rent

Nothin goin on but the rent

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 does not hide the 'thwaddle'

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

A Proud American Family-online.

A Proud American Family-online.

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,

June is Myasthenia Gravis Awareness Month-yes, I’m late!

June is Myasthenia Gravis Awareness Month-yes, I’m late!

I’ve been a little backwards lately…a lot going on in the Lane.  I wanted to talk about MG and APS as both have awareness months in June.  Even though I kind of missed the boat on talking about them earlier it’s ok, as long as word gets out, it’s ok if it’s late.  Right??  I’m trying to make myself feel better for not doing this sooner 🙂

Myasthenia Gravis means “grave muscle weakness”.  The most common form of MG is an AI(autoimmune) neuromuscular disorder. So many of us AI’s go and see a rheumatologist but with Myasthenia Gravis you would see a neurologist.  I learned a lot from reading at the Myasthenia Gravis Foundation of America and now I’m going to try and squeeze some of it out of my brain into a mini biology lesson.  Bear with me as I’m running on no sleep.  Like my disclaimer?

When our brain sends out a signal for our muscles to move, an impulse travels down the nerves to the muscles. But the nerve and muscle don’t actually touch; there is a space between the nerve ending and the muscle.  It’s called the neuromuscular junction.  Alrighty, here is the place that I’m going to have to jump back and forth and plagiarize the site because my pea brain can’t remember it all.

According to MGFA when the nerve impulse originating in the brain arrives at the neuromuscular junction it releases a chemical called acetylcholine.  Acetylcholine travels across the junction to the muscle side and attaches to many receptor sites.  The muscle contracts when enough of the receptor sites have been activated by the acetylcholine.  In MG, there is as much as 80% reduction in receptor sites.  The reduction in sites is caused by an antibody that destroys or blocks the receptor sites.

This next part I know a little bit about so I don’t have to cheat 🙂 The antibody is a protein that is supposed to destroy foreign proteins called antigens, like bacteria and viruses. The immune system in a person that has MG makes antibodies that attack their receptor sites.  This causes a slow down in acetylcholine being able to start up enough receptor sites for the muscles to do what they are supposed to.  The end result is muscle weakness.

Myasthenia Gravis. It’s a mouthful. And a body full.  I have a friend who has this treacherous disease and it sucks to put it bluntly.  MG targets muscles and leads to muscle weakness.  Breathing, swallowing, walking; it affects voluntary muscle groups.  Before I even knew what MG was I had seen a video on You Tube of a woman who was getting harassed by the police while on the ground.  She kept saying ‘Myasthenia Gravis’ as they taunted her as a troublemaker because of ongoing issues with her neighbor.  When the EMT’s came they told her they never heard of it as a dismissal.  As if someone has never heard of something then it must not exist, ha!  I believe there are close to 100 autoimmune diseases and just because I have one doesn’t mean I know them all.  Just because you are medical personnel doesn’t mean you know every disease and condition known to man.  Ugh, watching it made me sick to my stomach.

We all know that research and funding are some of the ways to getting closer to finding a cure for autoimmune diseases.  Awareness is also very important.  We have to get the word out about all of these diseases, let everyone know just how important it is to spread the word.  Make ‘autoimmunity’ a household word. The more we know as a public, the more people will be pushing for funding to find a cure.

Thanks for listening.  I planned on writing a little about MG during it’s actual awareness month, but June was a completely chaotic and sad month for us. Stop by Myasthenia Gravis Foundation of America and check it out.  It’s a really great place for information, advocacy, and patient education. Next up, APS!

Until next time,

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