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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

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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Docs playin peek-a-boo with diagnoses

Docs playin peek-a-boo with diagnoses

I have some good news-(drumroll please) I finally got Medicare ( woo hoo!!!!)!!!  I went 3 years with no insurance after I lost my job.  The amount of money I owe for medical bills is astronomical.  I think I can safely say that my credit isn’t credible anymore. No one will be giving me any loans in this lifetime, ha!  Good thing I have The Big C.  I told him if he tries to leave me I’m grabbing on to his ankles and he’ll have to try and run with me holding on.

Anyway, back to the Medicare.  My primary care doc has given me a referral to be seen at the big state teaching hospital.  Yeeeee hoooooooo!!!!!  I finally have some kind of coverage that gets me in the door.  I am so happy.  For the past 3 1/2  years I’ve had doctors scratching their collective academic heads and going hmmm.  Then I get a diagnosis, and I get it taken away.  Peek-a-boo! It’s here and then it’s gone…  The only one that hasn’t been taken away is the small fiber neuropathy.  That’s because I had a biopsy and they could actually see it and diagnose it.  It sucks that so many autoimmune diseases don’t have one clear test.  It’s more of a symptom game and then you have to have a rheumatologist who’s willing to put their neck out and actually diagnose you before the average 6 to 11 year time-frame.  As soon as I told my rheumy that I was going to be seen at the teaching hospital, he backpedaled on the Still’s and dermatomyositis.  Even though I have the rashes and skin issues that go hand in hand with each and solid bloodwork.  I just can’t wait to be seen at this hospital, I’ve been too sick for too long.  I’m going to be seen in the rheumatology clinic but was assured that they would take a team approach on me and try and figure out what’s causing my Cushing’s and chronic edema before I explode.  It wouldn’t be pretty that’s for sure.  I am flaring with my RA right now ( I mean UCTD again) so I’m in a lot of pain in all of my joints and it makes it worse from my hips down because of all of the water pushing the bones in my feet apart and the pressure in my knees.  As me and C would say, Oy! My pancreas! It’s what we say when we realize that either one of us is going on and on and on about body parts.  It means, shut up, you sound like one of those  people that like to tell you all about all of their aches and pains when you say hello.  If you could feel your pancreas hurting, your pretty much hurting everywhere.

Change of subject: Here’s kind of a happy thing, for me anyway-  I finally got Photoshop elements 8!!!!  I am a digi scrappin fool I tell ya!!! I also got a few new kits from a wonderful designer and friend.  And, I bought My Memories Suite. Yeah!!!  That’s where I’ve been spending my free time lately.  I am hooked. I could spend days just cruisin the online shops for kits, actions, or just elements.  But-I don’t have much free time, or not as much as I would like that is.

The other day I was searching for the video camera.  Our house is a little ‘cluttered’ now that I’m on a break from housework, ha!  I was going through stacks of stuff in the corners of our family room and I found my bag of knitting.  I just stared at it and was like, oh wow.  When is the last time I’ve seen that bag and how did I ever have the time to knit??  I remember sitting on the loveseat upstairs at night and going through new patterns.  What life was this in?  I swear there aren’t enough hours in the day now.  And I’m home all day so I don’t get it.  It seems like I had more time when I was working full-time, but how can that be?  Maybe it’s like money.  The more you make the more you spend.  The more time you have the more you need.  I don’t know but I felt a little sad just thinking about it.

I’m off to check on some websites and figure out which ones I’m going to drop.  I have way too many social media sites and I’m thoroughly addicted to those too so this is going to be hard.  I know for sure I’m keeping my Christian women sites, all of my photography sites, and facebook.  The rest is going to be hard to choose.  I’m leaving you with a few shots from this time last year.  Right now we are having a cold spell (12 degrees at night brrr) and at this time last year we had this freak snow-then-ice storm that left us without power, freezing, and me taking a million shots of the ice.  Enjoy and until next time

2michelle

Reaching
Reaching
Ice on Top
Ice on Top
Stuck in the Middle
Stuck in the Middle

no copy or use of photos allowed without express written consent from genius, uh I mean blog author  🙂

What’s up

What’s up

I’ve been meaning to post here for the past 2 days, but I have been flaring like crazy.  It’s 1:30 in the morning here and it’s the first time in the past 48 hours that I feel almost normal.  I know that there are so many people who have different autoimmune diseases, and other diseases for that matter, and I don’t know how people do it.  How do you get up in the morning and get ready and go about your day?  I want that back in the most desperate way.  I do realize that this is depression talking, and that things WILL get better, but for now I just can’t see the light at the end of the tunnel.  I still have a month left before I see the neuromuscular doc for my biopsy results.  Has anyone had to wait 2 months for results???  So for now, I just keep taking 2700mg of neurontin a day that does absolutely nothing and wait.

OK, enough with the negative venting!  The Big C and I were talking about getting back into shape.  I’m limited in what I can do in the way of excercise, and neither one of us ‘likes’ to work out…So, we have a WII.  And the kids are always playing games on it, but if we could steal some time on it we want to try out WII fit.  I was reading my fav blogs today and came across this post from Marijke from Help My Hurt and I had to laugh. Check out her blog, she has some really great information for anyone with chronic pain.

And that brings me to National Invisible Chronic Illness Awareness Week.  I wanted to write about this on Monday, see above, lol.  My bloggin friend Connie will be speaking this week and I sure hope I didn’t miss it.  But if I did, I heard that it will all be archived, so that is cool.  I will be checking it out tomorrow, God willing, I WILL NOT BE FLARING SO HARD!!!  There.  That will work I’m sure.  There was something else I wanted to write but my head is full of mush so I’m signing out.  Peace.

(snail) image: FreeDigitalPhotos.net

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!

Bumpkins go to the City

Bumpkins go to the City

Me and the big C ended up going on a much needed 2 day trip to the city. We stayed at a place called the Hotel Monaco and it was grand indeed. The room was beautiful. The building was built in 1912 so it was crown molding everywhere and really high ceilings and windows. In the lobby (they called it the living room) they had free cocktail hour so we went down on the first night and the big C had a really good micro brew while I sipped Coke out of a wineglass and damned my medications that i have a love/hate relationship with. This was one of those hate times…I took a walk around the livingroom staring at all the art and going oohh, ah when appropriate. Me and the Big C were not dressed for this hotel but I didn’t really care. I wasn’t about to drop cash for some city casual in size one million for my new fat ass. I just squeezed into whatever I found in my closet. sigh. They had these 2 beautiful dogs in the lobby, it is their home and I was checking out their beds which looked waaaay more comfortable than mine at home. They has silver serving dishes and this cute little fire hydrant in their little living area. Fancy city dogs. If we would have brought Dobbie, they would have mocked him and then turned their noses upward I’m sure. All kidding aside, it was a great hotel, excellent staff, I’d go back in a heartbeat but then I’d have to kill my kids all over again when i got home. sigh. I don’t know if I could do it twice. Getting blood out of the carpet is hard….just kidding! ha! My son came over for the weekend with my 3 grandkids who like run rampant when I’m not there to regulate. Well, looks to me like there was some kinda party and they left before we got home leaving everything for my daughter to clean and clean she did. She was exhausted and there is still so much to do. Her doc told her to rest, no lifting, etc. Her bf is going to have to pick up the slack since all I seem to see him do is sleep, eat, and talk. That doesn’t make my countertops shine dammit!! We had a great time, it was good to get away. I’ve been flaring ever since, but it was well worth it. I think we are going to have to do something like this every couple of months, it helps in the sanity department.

This is me talking to a statue of a seal downtown.  I really do need to get out more often..

 

I thought the courthouse looked cool.

 

We just missed a flower show across the street from the courthouse, but I got a quick snap of this sunflower.

Flaring, Friendship, and Flatulence

Flaring, Friendship, and Flatulence

It’s a triple threat! Oh lordy I am in the worst flare. It’s almost midnight and I’m sitting here in my ratty bathrobe and I have been reading all the blogs that I follow…I have been neglecting this blog, but not on purpose!!! As my kids used to say, everything that happened was ‘not on purpose, it was on accident’, ah, that brings back memories. My kids are technically grown, I’ll just leave it at that 🙂 I think I’ll ask my son’s wife if he says it was on accident, he he.

OK, I feel the need to whine and kvech so here I go…This flare sucks! This disease sucks! I want my life back. I didn’t sign up for this. Why me? I have no control over my body, my body controls me. I hate crying. I hate feeling like a burden on my husband. I hate that my granddaughter saw me cry today (she’s 2 and she thought it was funny so at least I don’t have to worry about scarring her for life…) I hate being held hostage to the doctors ideas, or lately non-ideas~that’s ultimately worse. I hate having lost my job and along with that my insurance when I got sick. I hate paying almost 800 dollars a month in meds cost. I hate feeling guilty about being the one in the family that is bringing us down financially. I hate that I don’t have a car anymore and can’t drive. I hate that when I’m sick I mole-hole myself up in the house. I hate when I can’t make it up our stairs out of our room in the morning, and I hate that I’m weak enough to cry about that too. I hate my legs for burning and muscle clenches that would bring a horse down, I hate my burning and freezing cold hands and feet. I hate that when this happens I fall into a coma like sleep whether I want to or not. It all boils down to-no control. Who would ever have thought that they would wake up one day, not only feeling really shitty, but then come to realize, they have absolutely no control. ok, im winding down now. whew.

Friendship: My husband is my voice of reason, sometimes so much reason that I want to throw a shoe or a remote at him, whichever is closer. But it’s true. He’s always got my back. He goes to every visit that he possibly can ( I tend to clam up around docs like i was sitting in the principles office or something, they intimidate me-more therapy for me, yipee) and when I forget what I was going to say he says it for me, he tells the embarrassing stuff too. He is my rockstar. If they don’t want to go in the direction we think things should, he talks them into it. I think docs have a lot of patients that just listen to what they say and go home. I know I used to. Until I got sick with the disease called AUTOIMMUNITY. It can do whatever the heck it pleases, and I am the body that feels it all. So if the docs don’t want to hear me, the Big C tells them again. They have to listen to me, it’s my body. My quality of life. They aren’t at home with us watching my writhe in pain, trying to put the fire out on my legs, or trying to walk when my joints don’t want to, or trying to remember whatever the heck it is I was trying to remember. We learned real quick that we had to be our own champions and read read read!! As much legit information that we could get out hands on to stay on top of things. My favorite friend is my husband Big C. I love that man and he has stood right beside me through this whole awful ordeal with his arm around me and telling me that one day, it will be better. That’s just one of the many reasons I love him

Which brings to flatulence..ahh, funny word, idn’t it? Men. yep, Men. They love to rip em, smell em, they think they’re funny, and if they can get it to go up or down an octave you would’ve thought that the Steeler’s just got a touchdown starting at the 20. sigh. Sooo, Grampa can blow the bassoon. Gramma can too after chili night and blame it on Grampa. But my sweet baby granddaughter, who is ultra girly and polite with peeze and dankoo, let the biggest one rip today, it sounded like an elephant blowing. She looked at me, waited a beat and just busted out laughing right into Grampa’s arms.

That’s our girl. Through all the pain, she made my day.

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