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Cure JM a finalist! 250,000 for research!!!!

Cure JM a finalist! 250,000 for research!!!!

I just wanted to drop a quick THANK YOU for all of you out there who diligently texted and facebooked and on-site voted for Cure JM to win in the Pepsi Refresh Challenge.  Oh my gosh, I still can’t believe we won!!!!!  It’s amazing, wonderful, incredible, and oh so needed! Thank you. All the children with JM have some more hope for a cure with the 250,000 prize money to go towards research.

Love to you all,

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.

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,

Depressed and optimistic, is that possible?

Depressed and optimistic, is that possible?

 

I have dropped off the radar again.  Not intentionally;  the days just seem to meld into one long day, and I’ve been so sick, time is getting away from me.  I haven’t talked to my best friend in at least a month.  Again, not intentionally.  I’ve written so many ‘I’m sorry’ emails in the past, I just don’t know what to say anymore.  I feel extrememly guilty about isolating, but at the same time, I can’t seem to stop.  I had a horrible realization a few days ago, and it was-I make it through each day and try and get well enough to make it to my next doctor visit.  I actually missed my last one.  I couldn’t get out of bed so C went and picked up my prescriptions.  This is no way to live, I feel powerless to change it.

Between non-stop flaring and being a momma, I have no time for anything anymore.  Facebook, my Christian groups, Flickr, television, nada.  For those who aren’t computer-heads it’s not much of a big deal, but the computer has become part of my life since becoming ill.  It’s my ticket out into civilization, lol.

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Hope

Hope

My Angel!
My Angel!

I finally made it to see the rheumatologist at the hospital. I had to cancel my appointment a couple of weeks ago because my dad showed up at my door in a state of dementia.  I didn’t give them the reason why I had to reschedule, and they set the appointment out a few months.  I was so upset. The next day they called with an opening for the following week.  It’s unheard of there so I figure God was listening.

It wasn’t easy getting ready to go.  For the past month, maybe even two, I have been mostly horizontal.  My body is failing me in so many ways it’s hard for me to even talk about it.  I laid in bed until the last possible moment time-wise and then climbed the stairs to get in the shower.  I hate to say this or even type it but showering is near impossible for me.  I have to use a step stool to sit on, ugh, I won’t even go there.  So my and C finally get into the car and we are almost on time for the hour and fifteen minute ride.  I’m out of breath, sweating like crazy (it was about 40 degrees) and shaking.  All I wanted to do was go get back in bed and close my eyes and pray.

Minutes after meeting the doc I was hopeful.  He LISTENED to me, very important in trying to diagnose.  He asked so many relevant questions.  I felt like I was being heard for the first time in a long time.  He talked to us about the tests he was going to do and wants to see me back in 4 weeks.  I was a little surprised as I thought it was a one shot deal.  I want him as my rheumatologist and am going to ask when we go back.

Since my appointment was the last of the day, their labs and x-ray were closing down.  He actually ran to his office to put the orders in and walked us to the lab.  I have never ever seen a doc go out of his way like that.  I actually cried.  What a doofus, I know.  It felt good to have some hope.  I need answers just as much as I need some relief.

Have you ever had a doc go above and beyond?  If so, is this the norm for your specialists?

Until next time

2michelle

What is Lupus?

What is Lupus?

I stopped by my You Tube account the other day and I’m glad I did.  I got a message from Chandra, (theleepchatchannel), telling me about her new campaign for awareness.  It’s called LEEP for Lupus ™.  I really liked her video that described what lupus was.  If you’d never heard of lupus, her video is a great explanation of it.  I really liked the video and I know a couple of people that would benefit by watching this video.  Sometimes it takes hearing about it from another source for people in your life to ‘get it’.  Check it out!

ADA Amendments Act of 2008

ADA Amendments Act of 2008

Woot Woot!!! How’s that for an educated sentence?  The ADA Amendments Act of 2008 passed.  What does this mean for you and me?  Let’s have a read

** The ADA Amendments Act of 2008 (S. 3406, passed by the Senate unanimously on September 11, 2008):

  • Overturns the erroneous Supreme Court decisions that have eroded the protections for people with disabilities under the ADA, restoring original Congressional intent.
  • Rejects strict interpretation of the definition of disability, and makes it absolutely clear that the ADA is intended to provide broad coverage to protect anyone who faces discrimination on the basis of disability.
  • Strikes a balance between employer and employee interests.
  • Prohibits the consideration of mitigating measures such as medication, prosthetics, and assistive technology, in determining whether an individual has a disability.
  • Covers people who experience discrimination based on a perception of impairment regardless of whether the individual experiences disability.
  • Provides that reasonable accommodations are only required for individuals who can demonstrate they have an impairment that substantially limits a major life activity, or a record of such impairment. Accommodations need not be provided to an individual who is only “regarded as” having an impairment.
  • Is supported by a broad coalition of civil rights groups, disability advocates, and employer trade organizations.  **

Congress overturned two Supreme Court cases that narrowed the scope of the ADA.  It’s now made clear that bodily functions such as immune system, digestion, brain, circulatory functions and more can be just as disabling as not being able to see, hear, or walk.  Here’s the biggie for me-Congress has said “An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” This is a first!!!

I’m not in remission although I pray for it each day.  But the nature of the beast when it comes to autoimmunity for me personally is having really, really bad days then having what I would call a ‘good day’.  Before I got sick I would NEVER had called it a ‘good day’ for just having some pain while climbing the stairs instead of needing help, or having to lay down for an hour because of extreme fatigue as opposed to sleeping for 20 hours straight on a ‘bad’ day when the body says g’nite only to wake up hurting so bad you pray for sleep again, or just having to take one pain pill that day, or the burning is at a 4 on the pain scale, yay!!  But that is an extremely good day and they are few and far between for me.  Also having an autoimmune disease means taking meds that compromise our immune systems leaving us wide open for every cold, flu and nasty infection that comes down the pike.  I have to take them every day, no matter what.  If I didn’t my body would go into attack mode…it sucks.  That’s what it all boils down to is, it sucks.

(OK, now I’m a little off topic and rambling but my typing fingers have a mind of their own tonight.)
It’s bad enough to have a lifelong, chronic, invisible, misunderstood, disabling, painful, depressing, incurable, “what’s it called?” disease, and to top it off, when your body says”That’s enough.  I’m shutting you down.” and you can’t work, disability tells you that you are not sick enough.  HA!  That pisses me off to no end.  The first time I filed for disability I was nixed within 3 months.  I got a letter telling me that I was well enough to work 40 hour weeks.  As soon as I read that sentence, I started laughing.  It started out slow, and it built up and built up until I was chortling like a maniac.  The Big C was getting concerned (I’d say scared, but he say’s he doesn’t get scared, hrmph)  At the time that I received the letter I was using a walker to walk and a wheelchair if we were going to be out for any length of time.  I had just started taking plaquenil and it takes time to start working.  I never thought there would be a day when I would be fighting to be considered disabled.  I don’t want to be disabled!!!!! I want to rewind time and be healthy.  Wow, how did I get off on this tangent??  This post was supposed to be good news…I guess good news with a little bitching thrown in.

That’s it for me tonight.  I’ve got the flu, LOL!  That’s probably why I’m so snippy.  Until next time

**taken from the website Committee on Education and Labor, Us House Of Representatives

It’s been a while…

It’s been a while…

since I’ve posted anything! The bean says that ain’t cool, and you can tell by the goggles-she’s cool.  These last few weeks have been full of flares and sleep.  Not a lot of fun, and sure not postworthy unless I wanted to get on here and whine-aaaaarrrrgh!

I’m gonna whine a little anyway… he he  I did go and get my biopsies done. We had to go to a bigger hospital than what we have here.  It took 5 months to get in to see this neuromuscular surgeon.  So frustrating.  My burning symptoms have just gotten worse and worse, and even though I knew that just by having the punch biopsies done my burning wasn’t going to go away, I was still frustrated.  No one should have to wait 5 months for an appointment.  When the day came I was so nervous I couldn’t eat anything, so by the time we got there I was starving. We were running late because traffic was really heavy and even though we left 2 hours before the appointment and the drive is an hour and a half, we just barely made it on time.  When we got up to the right floor and found the desk, I handed the receptionist this form that they sent me to fill out prior to the appointment.  She stared at me with an expectant look on her face.  “yeesss?” (I blame my rudeness on low blood sugar)  She said “Didn’t you receive the packet we mailed out to you?”  Ah, shit.  It’s five minutes past the appointment time and she says, “Don’t worry.  Just fill out as much as you can so the medical assistant doesn’t get mad.” WTF?  So, she hands me this packet that’s about half as thick as the phone book and I glance to the left of me where another woman was checking in and she was just reaching out to grab the ‘packet’.  Somebody must’ve been sleeping on mail-all-the-packets-out day.  So we found a seat and I started answering a million questions while my stomach rumbled and grumbled.  I didn’t have any addresses for my docs, or fax numbers and such, and then I answered every question pertaining to my health known to man.  I actually finished it and turned it in.  Finally the medical assistant called me back, and she was nice ( I finished my packet) and we got situated in the room.  When the doc came in he looked tired and cranky and he said “So, they forgot about you.  I’ve been sitting in my office reading for the last hour.”  Turns out the front desk forgot to check me in on the computer and me and the doc both were sitting there for an hour.  Me frantically filling in questions and him reading.  By now I’m so hungry I’m shaky.  So the doc is really cranky and all I can think about is getting the heck out of there so I can eat.  He tells me his partner is going to perfom the biopsies and he leaves the room.  So I’m laying on the table and I’m dreaming of taco bell, jack in the box, biiiig milkshakes, aaaggghhh.  The Doc decides to do them on my left leg because he said that was the worst leg when it came to all of the manual tests-push, pull, poke with a pin, etc.  His partner tells me that she is going to use sterile technique to help ensure no infection will come about.  She says that we have to be careful of infection.  I watch her set up the tray and glove herself and drape me, and what she doesn’t know is that my profession is a medical assistant and had I done that type of sterile technique at work I would have been fired.  It was all wrong!  She leaned her body over the field, no sterile gloves, ugh, and so on.  Oh gawd, I’m already thinking of getting the worst staph infection in the history of, or MRSA or anything completely irrational.  She had me lay on my side and she injected my hip first with a numb-er, I think she said lidocaine, and that hurt like a bitch.  It burned and I squeezed The Big C’s hand and laughed which is what I always do when I’m nervous..it’s like a nervous tic only way more socially unacceptable.  The rest I couldn’t see from my vantage point but C said it was way cool.  This little tool she pushed up against my skin and twisted and twisted. Then she pulled it out and used teeny tiny tweezers and scissors to grab it and put it in a jar.  She did the same on my lower leg above my ankle which burned a million times worse than the hip area.  When I asked her why she said because there is less fat there, more fat up on my hip.  Thanks.  That was it.  She bandaged me up and told me not to get it wet for 3 days.  It was 100 degrees that day and I needed a shower.  So we did alot of taping so I could take cool showers.  End of story.  It has been WAY too long since I blogged.  My next post with be shorter and sweeter 🙂  I miss the blogoshpere, I’m back baby!!!  I just have to stay out of the depression rut that comes with being in pain for too long of stretches.  Man, it’s a killer.  I’m trying to stay happy even if I have to fake it.  If you walk around smiling, it really does help, even if you look like an idiot, it wards of the blues.  Usually.  Sometimes.  Well, it worked today anyways.  I need to thesaurus the word anyways, I use it too much.  Regardless, I will use that word more often.  BTW, anyways wasn’t in there.  It’s anyway.  sigh.

It’s good to be back, until next time, with no whine!

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