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Pepsi Refresh Project; Cure JM in 4th Place!

Pepsi Refresh Project; Cure JM in 4th Place!

Introducing the Pepsi Refresh Project. Pepsi i...
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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/0a580NC02G4Vkimv5W1P6uJBcgA;gulf.refresheverything.com/plci
http://www.facebook.com/l/0a580iI6HECgEjWhCqQJHh4J3Kw;gulf.refresheverything.com/mhc
http://www.facebook.com/l/0a580W_EmhYhDIGCaajmFqVCDLw;gulf.refresheverything.com/homesofhope2

Infusion, Confusion, Intermission…

Infusion, Confusion, Intermission…

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.

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

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,

I’m back! And feelin wiggy…

I’m back! And feelin wiggy…

I can’t believe we are halfway through the year and I’m still pretty much holding down my bed. There are SO many things that; have happened/are happening/are going to happen, it is overwhelming at times. I can’t post about them specifically as they are family issues, but the stress has all but immobilized me.

I have been putting off going back to the new rheumy to start treatment because there is too much going on and I’m needed here to help. At the same time, the longer I wait and the more I do, the sicker I become. It’s so cyclic. Yesterday I told Big C, just go ahead and call. Try and squeeze it in on any day that we have free and I’ll be there. I just can’t wait any longer. Oh, the guilt of it all is unbearable. I feel guilty now when I’m really sick because so many people need me. I’ve been pushing myself and I’m not new enough to think this will have no consequence. sigh. I need a shower people!!! Yes, that is my goal is to make it into the shower today. Taking it minute by minute.

Recently I posted my first ‘post’ Cushings picture on FB. I don’t look as bad as I think I do.(‘they’ say)  I still got it! LOL No, I just got more of it. 🙂 I’m finally coming to terms with the ‘cosmetic’ side of the disease. I am huge compared to my natural weight, but you know what? C still thinks I’m hot. And really, that’s all that matters. woot! I think he’s nuts but I’ll take it. Seriously though, we have seen more lows than highs in our 11 years together. They are usually not our lows, but lows we have had to deal with nonetheless. And we are still together. We are still desperately in love with each other. We are still our favorite people to be around, we make each other happy. He is an amazing man, and I thank God everyday that I was blessed to find my soulmate. OK, enough sappy shmappy.

But in the same vein as vain, ha ha ooohh k, I have found myself scouring the wig catalog that keeps finding it’s way into my mailbox. I’m convinced C’s ex had it mailed to me to begin with, but now I love’em! There are so many rad wigs out there. I WANT ONE. Is that crazy? Are wigs just for grammas anymore? I mean older grammas. I know I’m a gramma. Just not old yet. I’ll be 43 tomorrow, so I’m young to my daddy who’d 80, but ancient to my daughter who’s 20. whatever. So, I find myself picking them up and looking through and actually pining over 2 of them. Wigs. Pining over wigs. Who am I???? 🙂 I’m losing my hair, that’s who I am. So anyway, I decide to look up the company online, and just Google the name and the first couple are always a couple of ads. One of them says, why buy from company x when you can get quality for the same price? And I decided to click on there. Well, I must have been in need of a laugh, because I could not stop laughing. Belly buster laughs. I’m sure it’s-you had to be there-kind of a thing. But each model, down each row was just HILARIOUS!! And I’m not knocking wigs, or wig models for that matter, per say, just these particular ones. There was 3 faces they had while modeling the wigs. 1. faux sexy tigress 2. scared 3. incredibly embarrased  
I just couldn’t stop laughing. And who did the final go ahead with the website after seeing these shots?? I’m not talking about Paula Young’s site btw, I put a link up to her site. That’s the catalogue I keep receiving.  I really, really want the Renni, in that exact color… OK, I’m done yackin about wigs.

I’m really missing being here. I’ll be here more often. Promise.
until next time,

Buffalo Humps and Muffin Tops, Welcome to the World Of Prednisone!

Buffalo Humps and Muffin Tops, Welcome to the World Of Prednisone!

This video is by Lisa Copen, founder of Rest Ministries; a Christian non-profit for the chronically ill.  Rest Ministries puts out Hopekeepers Magazine as well as hosting a social networking site called Restministries and Hopekeepers Sunroom.  I’m a big fan of Lisa, who started this all up on her own while battling crippling RA.  If you check out the site you’ll find a bookstore that has some really good books on chronic illness, invisible illness, and more. She’s definitely one of my inspirations, one of my heros!

OK, here’s my disclaimer.  This is not a paid advertisement for any of the above. This post is my opinion, from my perspective.  With that said, here ya go.

.

Until next time

Have lupus? The Lupus Alliance of America needs your help

Have lupus? The Lupus Alliance of America needs your help

In the beginning of my illness, I was told that I had lupus. I immediately went home, cried, then read everything I could get my hands on. I was online reading medical journal material, lupus blogs, lab reference sites, everything and anything (except for sites with no reputation, and the ‘cure all’ sites, ugh).

I joined a support group for people with lupus and friends and family of lupies. We shared stories of pain, grief, frustration, triumphs, symptoms gone mad, remissions, and bonded because of a common link-chronic invisible autoimmune disease: lupus. I have never in my life met so many strong women. Of course when I got sick I felt very alone. I soon found out that there were thousands of women and dozens of men on this site who were going through, or had gone through everything I was experiencing. I learned how to stand up for myself at the docs, how to keep records and manage them, find out where to look for lab explanations and the many acronyms, and most of all I learned that I COULD survive this. I could even conquer it some day. After about a year and a half, I let go of that group. It wasn’t because I didn’t enjoy it anymore, or that the docs told me they didn’t think it was lupus. It was just time. As I was leaving, dozens more were joining. Each one as scared as I was that first day in the room.

I will always advocate for a cure for lupus. Whether I have lupus or not it has a place in my heart forever. It is such a devastating disease, and was one of the most overlooked.

Now lupus is finally getting out there getting talked about and people in the entertainment industry are advocating for research and a cure. Say what you will, but when famous people stand behind a cause, people listen. Lupus voices are being heard. And a new drug! The first one in 50 years!!! Can you believe that? 50 years. It’s just unforgivable that it was ignored for so long, but thank God there is a new medicine.

We should all keep talking and bringing awareness to this disease and other autoimmune diseases; Multiple Sclerosis, Ankylosing Spondylitis, Antiphospholipid Antibody Syndrome, Graves Disease, Chron’s Disease, Dermatomyositis, Meniere Disease, Rheumatoid Arthritis, Insulin dependent Diabetes, Mixed Connective Tissue Disease, Schleroderma, Myasthenia Gravis, Ulcerative Colitis, Cardiomyopathy, Addison’s disease, Vasculitis and many, many more.

I’m gonna stop here and just ask, if you have lupus or are a parent of a child with lupus, will you please take the survey? It’s put out by The Lupus Alliance of America, it takes about 30 minutes and it’s results will help them learn what people with lupus are in need of, and the data will help spread awareness and speak of what effects lupus has on the people with the disease. Remember, awareness is key. It’s not going to be able to be swept under the rug anymore. It needs immediate attention, more funding for research to find a cure. Check this statistic out, it’s from the AARDA site

NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).(AD: autoimmune disease)

You can go directly to the survey by clicking on the survey logo below.  At the bottom of the page is a link to the Lupus Alliance of America’s website.  Thank you.

Until next time,

2michelle


Survey

In the last ten years Lupus has finally started to get the attention the over 2 million Americans who suffer from it have long dreamed of.  From garnering special focus at the National Office of Women`s Health and the Office of Minority Health, to National Awareness campaigns and more research on lupus, and the development of new medications to treat lupus, those living with the disease are more encouraged than
ever before. But more work is yet to be done.

This is a very important time for lupus research and the Lupus
Alliance of America needs your help. To further the dream of greater public awareness, much needed government support and diligent research into the cause, cure and treatment of lupus, The Lupus Alliance of America, its affiliates and L.I. CW Post have designed a voluntary survey to help gather statistics to assist them in achieving those goals.

JC VanderPutten
Lupus Alliance of America

http://www.lupusalliance.org


Optimistic and Reconnecting

Optimistic and Reconnecting

the city2

I can honestly say these last few months have been pure torture. Pain, sickness, stress and depression. No exaggeration there.  And yet, I feel optimistic.  Why?  Because God is with me, and the rheumatologist at the teaching hospital ROCKS!!!  I asked him if he’d be mine, and he said yes!  My new rheumy I mean.  Big C approves 🙂  I’ve never had such instant access to a doc before.  In my experience, you call the office and they have a system of blockers.  The front desk, then the assistant.  You don’t get to speak to the doc him/or herself unless you make an appointment.  I might get some flack for that, but I was an assistant and we were taught that in school.  It is your job to keep the patients away from the doc so he can get through his day.  And I mean patients calling in, not the ones in the office, lol.  Docs are busy and they always have a full schedule.  So medical assistants are crazy-busy and work especially hard.  Next time you go to the docs, let them know you appreciate them. They do all the behind the scenes work that no one sees.  Stepping down from the soapbox.  Anyway-the hospital has an e-chart system.  I always said I would never want my medical info online and now I love e-chart.  You can see all of your test results as soon as they come in, you can email your doc with any questions, and mine gets back to me THE SAME DAY!  Wee hoooo!  OK, it’s been a while since I’ve been here so I need to get my thoughts together and pick up where I left off.

New Doc told us to email him as soon as my rash came back.  On our previous visit, I brought pictures of my hand rash, knuckle-red-scaly-yuck, chest rash and my legs when they turn all pink/red.  He already told us that it’s really hard to diagnose retroactively.  After seeing the pics you could see the wheels turning.  He told us that there are two paths to take with treatment; IVIG therapy if it’s dermatomyositis or ‘the next step’ if it’s RA, Still’s.  He said since I’ve already tried and failed with methotrexate and Imuran, it’s the next step.  I didn’t ask which med for the RA, I was overwhelmed with his efficiency.  I found out that when my muscle symptoms and rashes first started I could have had a muscle biopsy to find myositis.  Now, he says, I have plaquenil and prednisone in me for 3 years it would mask the results.  So I’m scheduled for an MRI of my femur.  That should show disease.  I’ve gotten set up with an ophthalmologist because of the double vision that I have.  Turns out the yearly and baseline eye exams that I read about when I started plaquenil really ARE needed.  My (old) rheumy said I didn’t need them, that the percentage of eye issues was so low. sigh.  So I’m getting checked for toxicity in my eyeballs.  I’ve got an appt. with the Derm to biopsy my rash, a bone density scan, and a neuro appt to rule out Myasthenia Gravis.  I’ve only lost my legs a couple of times and fallen down the stairs but he wants to rule it out.  I feel like I struck gold in the healthcare hills.  Bout time and I deserve it!

The hospital has a tram that takes patients from the top of the hill to the bottom.  And vice-versa.  It reminds me of the ride at Great America that takes you from one end of the park to the other.  Boring, but you take it anyway.  It was a beautiful day so I asked C to pull off at the vista spot so I could get some shots of it.  So we got out and I started snapping away with my soon-to-be-broken camera. yes, broken. and this was my point and shoot.  my Nikon D60 is laying in it’s bag, broken too…

weeeeeee
weeeeeee

I noticed when I was resizing this that there is a person on board and it looks like he/she is looking at me.  It looks kind of ghostly actually, spoooooookyyyyyy.


through the treees

This next shot is one of the tram but with many, many trees in the way.  Even though it goes along that wire pretty slow, I was panicked that I wouldn’t get a shot. So I kept my eye on the viewfinder while screaming over to C “where’s it at? Is it coming yet? Argghh, all I can see are trees!!!”  Good times.

Everything in our backyard is either blooming, budding or just screaming to be photographed.  It’s been driving me nuts so I’ve channeled that creative energy into editing my old photos.  I have a couple thousand on this computer but it only goes back a few years.  I have every great pic of my kids when they were younger sitting in a dead desktop comp on my closet floor.  But-I was visiting my dad a few days back and in his iPhoto are shots from the 90’s!!!  I almost started screaming, my kids! my kids!  Instead I said in a high-pitched squeal ‘Can I burn all of these on to disk?!?!’  He didn’t have his hearing aids in and I startled him, lol.

Alright, my eyes are blurring.  I’m on the 3rd day of a migraine.  This is a first for me.  I’ve had a weird head pain that lasted for months, but this is a true blue migraine.  I’m sitting here typing in my J-Lo pink glasses…Yah, I think it’s time to buy a new pair.  I’m coming back tomorrow.  I need to keep writing or I’m just going to isolate again, and I just can’t have that.

Until next time,

2michelle


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