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Where Did the Summer Go?

Where Did the Summer Go?

I have been pretty quiet I know, it’s been a weird and kinda crazy summer.  I finally got my diagnosis (dermatomyositis), got my first treatment; landed in the ER a couple of days later with WORST SIDE EFFECT EVER, then went on to have a series of strange days.

I woke up in the mornings and didn’t have glass feet!  Soon, I was walking without my cane! (this is huge as I’ve been attached to that dang cane for a while now) All of those little cells from 1,000 healthy people were coursing through my veins waving there little cowboy hats and yellin Yeee Haaaawww! and I’m gonna git you sucka! to all of my Good Cells Gone Bad.  And they were winning! I had days where I felt great.  I could load and unload the dishwasher and not be bed-bound for 2 days after. This was actually the case before the IVIG.

So- here’s where I’m the lame-o.  After going in to the ER in the back of an ambulance, I freaked out that I wouldn’t be able to have another treatment. I scheduled an appointment to visit my rheumatologist at the hospital but failed to schedule myself the next round of IVIG.  So, when I meet up with the doc, he tells me no, I can get more treatments-they can pre-medicate to try and prevent the headache of the century and all the vomiting and oh, by the way, when do you go back?  I’m sitting in the chair in his office going, uhhhh.  Gee, I didn’t schedule an appointment… So he goes down the hall and brings one of the infusion nurses into the room and tells her to squeeze me in. Try as she might, it’s a no can do. Their chairs are booked solid. So, I”m having my next treatment on the 21st, and oh man.  I definitely have no stampede of little warrior cells going on now. Probably just one little lone ranger and that’s why I’m having a few good hours here and there.  Other than that, I am in full flare mode again.  Rash, muscles constricted to the point of PAIN and so many weird little things that go with the package.  I had to talk myself down from an anxiety attack this morning.  I felt like I was going to stroke-out with the icepick that was pushing through my skull.  So, yeah.  There’s my illness in a nutshell for the summer.  I left a lot out because it’s BORING and blah blah blah.

OK, now for some good stuff.  We got a new puppy!!! His name is Brutus and he is the most awesome little dude ever.  I say little dude, because if our pets could talk he would totally have a surfer thing going on man, catch a wave dude, awesome, tubular even. And he would talk real s-l-o-w.  Yep, that would be Brut Bruteman.  That’s what I call him because obviously I have problems.  But it suits him.  I call our other dog Pete, Pete Peteman so it was a natural progression.  I guess.  Wanna see some pictures? No? Alrighty then, here we go! (like when someone comes over right after you’ve been on vacation and you make them look at all 350 shots of random buildings and trees in a town they’ve never been and could care less about, fun!!) OK, NOW here we goooo!!!

The Bean decided she wanted to hold the bowl while Brutus ate some.  It was hard to say no…

 

 

Look at those eyes! He is going to be one spoiled doggy, for sure.  It’s hard to deny a face like that.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This is the infamous Pete Peteman.  He rocks.  And he keeps the deck held down at all times.

SAM_0079

Alright, I’m off to bed.  Today sucked in terms of pain and icky feeling, I’m hoping tomorrow is a better day.

Until next time

Pepsi Refresh Project; Cure JM in 4th Place!

Pepsi Refresh Project; Cure JM in 4th Place!

Introducing the Pepsi Refresh Project. Pepsi i...
Image via Wikipedia

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,

Better late than never…

Better late than never…

I’m back. Surprised?  Me too!  I’ve come to realize that I’m a flake now.  Not because I don’t care or things aren’t important to me, but because my body dictates my life now and I really can’t stand that. I crashed at 3pm and woke up at 8:30pm and haven’t had a chance to sit down and blog. But, better late than never, right? Onward!

OK, I decided to share a few things with you that I think are pretty cool, fun, or interesting.  The first is something that I just heard for the first time tonight.  My son came over and told me that my dad was looking for this Celtic band and couldn’t find the cd anywhere.  They are called Albannach and are a Scottish pipes and drums band.  Dad loves Irish music and knows the words to all the old songs from the Ol’ sod.  So this is kinda cool that he’s lookin for a Scottish band. When I googled them, the first hit I got was of them jammin with the Red Hot Chili Peppers.  Check it Out

I have to find them in time for Father’s Day.

OK, lately I have been completely and thoroughly addicted to shopping for graphics for digi scrapping.  And I do mean addicted.  I’m gonna have to have Big C change the password on our paypal account because each 10 and 15 dollar order adds up quick.  Fo sho.  So anyway, (see, not using anyways anymores) I have been introduced through my thirst for everything digital to-Art Journaling.  With graphics, yes!  Perfect combo of hands on and digital.  Or you could just do digital but I don’t think it would feel the same.  And it really is freeing.  When you are working on your scrap pages you are preserving a memory for others, to last forever.  But your Art Journal is all your own.  You’re not making it for anyone else’s eyes so it’s anything goes baby! woot!  And you really don’t have to go buy a ton of stuff if you have some paints and pens, scissors and glue you’re good to go.  You could even use an old book and work right over it. So, here are a few links to a couple of art journal blogs and I’m gonna hook you up with an artsy woman on video.  The first blog is Tangie Baxter from scrapbookgraphics.com.  She has an Art Journal Caravan that I highly recommend if you would like weekly prompts and half of that weeks provisions (which brings it down to 2 bucks)  And the next is a Seattle artiste named Teesha Moore whom I adore! aaargh.  It’s late or early, whatever that’s what Im blaming my lameness on.  I’m going to link her blog to her first name and her .com to her last name.  She’s that good.  Wait till you see what she made while under the influence of six shots of tequila!  OK, I think the video is severely lacking now, and maybe even annoying so I’m leaving it out.

Well alrighty then.  It’s almost 6 am, I had to most ferocious, terrifying, slasher film nightmare that woke me up a few hours ago and my muscles from head to toe are killing me!!! Hey, I knew i couldn’t make it through a post without a little whine. ha!  There’s no way sleep will come so I’m heading over to SBG where one of my favorite designers, Mays, is having a 48% off sale to celebrate her 48th bday. Graphics, woot!  I love her style too.

until next nime

School’s Out For Summah!

School’s Out For Summah!

Oh yes.  Summer is here! Well, it’s not really here here, but technically it’s here. Our weather is just behind the times.  It’s still sporting a rockin mullet and wearing pegged pants…aaaahhh.  It’s 2 am and you know that brings out the weird in me.  It should in everyone.  Stay up late and get random.

OK, the last week or so has been pure caca. (is that how you spell it???) So instead of whining about docs that don’t really listen, coma sleeps, glass feet, and muscles that make ya go hmmm, I’m going to post a couple of adorable pics of da Bean.

Brand New Bean!

New Bean!

My gosh. Time has FLOWN right by. Four years ago she was just a tiny bean and now she’s in school!  She had her last day of school last week and there was a graduation for the kids that are going on to kindergarden.  Oh gosh, it was so cute!  The teachers built a little stage for the kids to step up on and receive either their graduation certificate or their ‘your coming back next year’ certificate.  So here’s where it gets cute.  The teach calls the Bean’s name and she gets up from her seat, steps up on the little stage, takes the certificate and holds it in front of her for a perfect photo op.  She smiles and then after she shook the teacher’s hand she looked out at all the parents and says “thank YOU”.  Everyone laughed and clapped and whooped and hollered.  She was a rockstar.  So she is smiling like crazy and sits back down as other kids get up for their turn.  Turns out she’s the only one who said thank you (hee hee) and after the last child went up she got out of her seat and climbed onto the stage again to look out and smile at everyone.  She stole the show.

Her Day

Her Day

Isn’t she just the cutest thing evar?!?!  LOL, I know I’m biased, but she so totally is.  I wish I could give a proper shout out to her school and her teachers, but I’m not going to use names without permission, or pictures (note the thought bubble over teacher’s face) and would never give out the name of the school. hmph.  If you are reading this all the wonderful loving teachers in her class, thank you SO SO much for all of the love, support, and excellent skills that you have given her this year.  She’s come a long way from the little girl who cawed to the little girl who could express herself with words.  You guys are amazing and I can never thank you enough.  Well, she’ll be there next year so I can start thanking you again!  One of the things on my ‘well’ list is helping out in the class one day a week.  I want to be there with her, and give her class my time.  Oh how I am praying that my body will listen to my mind and mellow out on me.

Alright. I am so not tired this is ridiculous.  Today is going to be rough.  Ah well.  I’m going to leave you with a bad pic of me. Not real bad, but just not good. Ha!

Until next time

Excited Gramma Gets Publicly Dorky

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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