How it All Began

It’s June 1st. Today would have been my dad’s birthday. It is also Myasthenia Gravis awareness month. Do you know what Myasthenia Gravis is? I feel compelled to share my story in hopes of helping just one other person muddle through this disease, make one person aware, help explain to others, or just to give you, my fine readers, something to read when you might be otherwise bored.

“You Have Cancer.”

Scary words. I’ve heard those words. Sitting on the side of a gurney in a brightly lit ER clad in an open backed hospital gown on a cold Friday night in January I heard those words. Next to me, the one person who I know will always be by my side, my husband. My Super Husband. In his arms was our first-born. Our Son. Our Hot Rod. A wee little guy was he, not comprehending the words, which poured forth from the doctor’s mouth. I looked at him - at my Hot Rod, and then at my Super Husband, then at the doctor.

He wouldn’t make eye contact with me. Facts. Facts were what he wanted to speak about so he could leave the curtained area as soon as possible. Wow, I came in because my chest hurt. Because my doctor’s office said if there were chest pains, they would send one to the hospital, as they were not equipped to do EKGs. I had an EKG, blood pressure was read, pulse taken, pulse ox recorded, blood drawn, and CT Scans performed. I was tired. Tired of sitting in this hospital, nothing was wrong with me. I was twenty-five years old, and even the triage nurse told me he felt nothing was wrong with me. Turns out we were both wrong, but so was the doctor, so were many doctors.

At the time, I had never heard of Myasthenia Gravis. I didn’t realize that what this ER doctor, the radiologist and come Monday morning the oncologist, thought was cancer may have just been the onset of Myasthenia Gravis for me. As I sat listening to the doctor in the hospital, explain that my “Arterial Blood Gas” was low, only in the upper 80’s, that prompted them to do a CT scan of my chest looking for a blood clot, and instead they found a mass I kept peeking over at my guys. “You have lymphoma.” Those were his next words, and those words did hit home. My dad had died of lymphoma just a couple years prior to this, and I told the doctor so. “I have spoken to an oncologist and Monday morning you’re to see him.” Said this doctor, after glancing up at me then back at his shield, the folder which he held in his hand containing the test results.

Monday I did see the oncologist. I underwent biopsies. I visited other doctors and surgeons. I became frustrated and confused and eventually, I stopped going to doctors. The oncologist told me, when the biopsy results were negative, “It’s like drilling for oil in Texas, either there’s no oil there or they hit the wrong spot.” Yet the surgeon declared, “You just have reflux.” Those four words were the decisive factors, what made me decide to stop seeing doctors. Reflux. If only he had been right.

That mass which was found, the ‘cancer’, turned out to be Thymic Hyperplasia. If I had had my thymus removed that January there is a chance that, while I may still have Myasthenia Gravis, I might not be as badly off as I currently am. Could’ve. Would’ve. Should’ve. That’s not the case. It was not removed and now I know why that surgeon was happy to declare I just had reflux and no surgery was needed. Turns out, removing one’s thymus is a pretty big deal, normally performed by a cardio-thoracic surgeon and he was a general surgeon with, in my opinion, a mighty big ego.

Thymic hyperplasia and thymomas (cancer of the thymus) are common in M.G. and some research suggests removing the thymus, soon after diagnosis, may result in remission for some. That’s the hope - remission.

Fast forward several more years. At this point, we’ve had a new addition to our happy clan. A princess has been born and our family is complete. We’re happy, that hasn’t changed. Then something happened, something new. Who knew getting a pacifier into a crying princess’s mouth could be so hard? ‘What is going on’ I thought? Scared. My arms won’t work, neither would these bumbling fingers. Shaking, uncoordinated, bumbling, that was me. I was also three hours from home. I saw another doctor, I had to, I thought

I regained my coordination; I was able to finally put that pacifier in her mouth. I just rested a bit before I could. Rest. Another clue. More clues would come, frustration would set in, I would declare my mistrust of the medical profession more than once, and a few years would pass. And so, my new beginning would start. The beginning of living with Myasthenia Gravis would have to start with the diagnosis.

I went to my family doctor after that scary episode with not being able to put the pacifier in Princess’s mouth. I told him of the difficulty I had with moving my leg, my right leg and arm were more affected than my left and they still are. I told him of the electric shock sensation I had from my back down to my leg. The MRI was clean. The neurologist I saw at the time said he saw nothing wrong and didn’t need to see me back - after insurance denied his request for an Evoked Potentials test. Nevertheless, something is wrong again, and off to my family doctor I went.

My eye. That’s the problem now. This is another clue in this curious game of Diagnose Just Me…Crystal D. I’m pretty sure my family doctor felt there was nothing wrong with me at this point too. That it was all in my head, but darn it my eye has a lump on it, it’s unsightly, and it’s droopy. He sends me to the first medical person I later thanked, he sent me to an ophthalmologist. The lump, it’s common. The drooping, it’s not. After his test - look up, look down, and follow my light, look ahead, blah, blah, blah - my eye is drooping a little more. “I think you have a neurological issue causing the Ptosis.” Ah, that’s the fancy medical word for eye droop. He sends a message to my family doctor stating this, and my next referral was to the second doctor I would later thank, my neurologist.

Admittedly, I was very nervous about seeing another neurologist after the first one I saw all those years ago. The way he dismissed me, made me feel as though I were crazy and my symptoms were all in my head, it was very disheartening. That's another thing with M.G., we can look fine on the outside yet be turning to mush on the inside. My neurologist, however, was nothing like the first one. That first visit, in February, he knew what was wrong with me. Said he suspected I had something called Myasthenia Gravis but wanted to do some tests to be sure. This is another problem, the tests. There are blood tests for Generalized Myasthenia Gravis - an Acetylcholine Receptor antibody test (AChR) and a Muscle Specific Kinase test (MuSK). The problem? The AChR is only positive in 80% of myasthenics and the MuSK is only positive in a fraction of the 20% the AChR misses. That still leaves many with Generalized Myasthenia Gravis with false negatives - we are classified as Sero-Negative or Double Sero-Negative.

Diagnosis of M.G. can be difficult if one or both of the blood tests are negative. I only had the first test, it was negative. I wasn’t surprised. My Super Hubby and I joke that: “If it’s rare, incurable, or hard to diagnose I’ll get it!” My neurologist, he wasn’t surprised by the test, but he’s not what I feel is the typical neurologist either. You know the kind who ride in the exam room upon their high horse, never look you in the eye, can never be wrong and know everything. Again, he stated he felt I had M.G., and asked if I had ever heard of it. I didn’t realize at the first visit that I saw that name before. It wasn’t until I went home after that first visit and typed into my favorite search engine the words “Myasthenia Gravis” that this had come up before - when the mass was found in my chest. That was the first clue, my neurologist’s face lit up when I told him “Yes, when they found I had thymic hyperplasia I saw that before.” This was one more symptom to clinch his preliminary diagnosis.

Off with their heads!! Or rather…Out with that defunct thymus! I was officially diagnosed with Myasthenia Gravis March 23, 2011 and May 2, 2011 I was at a large university hospital having my thymus removed by a cardio-thoracic surgeon with my Super Husband by my side, my Amazing In-Laws here with our Hot Rod and Princess. I was in the hospital for 3 days, in the smallest ICU room I think has ever been made, with tubes coming from places I hope no one shoves a tube again, but I was not on a vent. Thank God, I haven’t had to be since then.

That was the road to diagnosis and while there were many times I cried after being made feel this was all in my head, I was a few card short of a full deck, or crazy it turns out I was just the Fruit Loop in a bowl of Cheerios the zebra among the horses and it took a few good doctors to listen, to look at me and to dig down in those medical books and recall those words few have heard since graduating medical school…Myasthenia Gravis.

Now, just because those words are written in my medical files it didn’t make this disease go away. I’m not sure if I’ll ever be in remission and my new normal leaves a lot to be desired. Gone, it seems, are the days I could just hop up out of bed, shower quickly, blow dry my hair, dress myself, brush my teeth, run upstairs and grab one kid and then the next and get them ready all in under an hour. Also gone is running about outside, chasing kids, seeing one of anything, not having to worry about being unable to swallow, drooling, slurring (or as I like to say speaking in cursive), head drooping, leg dragging, and the list goes on.

Now my life still revolves around our family, that hasn’t changed. But my life also revolves around medicine, doctors, hospitals, nurses, and paying attention to how I feel. I start my day with a handful of medicine, I end my night with another handful, and during the day, there are more pills. I receive plasmapheresis, for five days every other day then I get four weeks off and we start again. Previously I was receiving IVIg (Intravenous Immunoglobulin) everyday for 5 days and repeat in one month. Both of these treatments require donors, like my Super Hubby and hopefully you, to donate plasma or blood.

Plasmapheresis is treatment where one lucky contestant, such as myself, is sent to the hospital, a double lumen catheter (or as I lovingly have dubbed him - Frankie - short for Frankenport) shoved into my jugular, wheeled from there to dialysis, and the process begins. First, suck the heparin (medicine that keeps one from getting a nasty blood clot) from Frankie, next flush (squirt some saline into) Frankie, *cue nasty taste in mouth*, then attach a water hose…I mean medical tubing onto each side of the catheter, nurse puts in a bunch of numbers in the squeaky machine, said nurse hangs some bottles of albumin (a protein found in ones’ blood) then later on a bag of what looks like orange juice (this is the plasma), turns machine on and we’re off and running like a heard of turtles! That’s about as fast as I run any more also.

During this process your blood is removed from one side (lumen) of your Frankenport, or if you have veins of steel through vein in one arm, the plasma from your blood is removed by a centrifuge in the machine, and your blood along with some donors’ plasma is returned to you through the other lumen or vein of steel in the opposite arm. A little over 2 hours later, I’ve officially broken out in hives, received extra Benedryl, probably some antinausea medicine, and we’re just finishing up and I’m sent on my way to rest for the remainder of the day and sleep off the Benedryl. After about the 3^rd treatment I start to feel a little better. I won’t be running any marathons. My idea of a 50 yard dash is still making it to the bathroom in time, but I can normally start to lift my leg a little more, my eyes aren’t as droopy and by the end of the 5^th treatment I can eat without having to ask myself “To choke or not to choke, that is the question!” Plasmapheresis is used for Myasthenics in respiratory distress, for refractory cases *ahem*, as well as for other diseases.

IVIg is another process whereby blood is needed from a very generous donor. Okay, lots of donors. The thoughts are to overload one with immunoglobulin and your body stops attacking itself for a short time. For some this works, for others it doesn’t, and for some insurance is what stands in the way.

All of these treatments are expensive, and I’m grateful we have insurance and my husband has a good job with understanding bosses and co-workers. I’m grateful for my family and friends and their thoughts and prayers. I write this to inform, to help if possible. Knowledge is power, but the problem is that Myasthenia Gravis is a silent disease, which many have never heard of. During medical school this isn’t a condition touched on very often, one is lucky to have heard of it let alone actually studied it during medical school.

So, here are some facts about Myasthenia Gravis:

*  Myasthenia Gravis by definition is Grave Muscle Weakness.

*  Myasthenia Gravis is a rare neuromuscular disease.

* Known as “The Snowflake Disease” because no two myasthenics are the same, and symptoms vary from one person to the next.

* Only 80% of Myasthenics are have the AChR antibody leaving 20% undiagnosed or termed as Sero-Negative.

* Of the remaining 20%, when a MuSK test is performed it is only able to diagnose 40-70% leaving many undiagnosed, or termed Double Sero-Negative.

* Unknown antibodies are the cause for patients who are Double Sero-Negative.

* Myasthenia Gravis can affect only one’s eye and is known as Ocular Myasthenia Gravis or OMG.

* Myasthenia Gravis can affect all voluntary muscles - meaning if you can control it, it can be affected. Can you hold your breath? Open your eyes nice and wide? Hold your head upright? Swallow? Move your leg? Wow, we have a talented bunch here! Sometimes I can’t. Why? MG.

*Rest helps, a lot! If you don’t move it, you’ll lose it some people say. For Myasthenics, that’s not the case. If we move it too much we’ll lose it! Moreover, it’s oftentimes during the worst possible times. Busy day with your kids…you have errands to run, groceries to buy, and soccer is tonight at 6! Run, run, run…crash! Didn’t make it to that soccer game after all because you tried to be a normal mom. Now you can’t breathe, and you’re contemplating a hospital trip and it goes like this: Should I go to the ER? I can breathe, not very well but I can breathe. I can’t do that to the kids they’ll be scared. Oh goodness what if it gets worse?! I think I can, come on and breathe darn it! Who knew breathing could be so hard? Hey Super Hubby, if things don’t get better or they get worse, think you’d mind taking me to the ER? Yep, I took all of that ‘breathing’ nonsense for granted for years!

Now for some common symptoms (and my commentary of course in these parentheses I love so much!):

* Breathing problems - which can result in respiratory distress requiring intubation and hospitalization. This is the scariest of all symptoms for me.

* Ptosis (This is just a fancy medical word for eye drooping.)

* Swallowing Difficulties (I just love it when you I have to decide what’s for dinner based on ‘can I swallow that’ instead of ‘hmm, that looks good’)

* Choking (I have but one word…Spree! Those were nearly the death of me!)

* Slurring (I love it when people think I’m drunk because I can’t form words properly, she typed with sarcasm dripping from her fingertips.)

* Unsteady Gait (And yes, I have always wanted to be viewed as an alcoholic as I walked through Walmart in hopes of getting on that fancy website PeopleofWalmart.com)

* Neck Weakness (sometimes requires a cervical collar to help hold one’s head up - who knew your head could gain a hundred pounds in one day!)

* Facial Weakness (results in a grimace instead of that large smile you’re use to and everyone around you thinks you‘re upset because you can no longer smile…*sigh*)

* Double Vision (Why yes officer I did see that car and the one on top of it, I just wasn’t sure which was the ‘real’ one. I didn’t mean to play bumper cars on the highway…and this, folks is why I haven’t driven in about a year now.)

* Limb Weakness (Never before did I realize how many muscles you use to wash your hair! Showering is a process through which I become exhausted. Today you must choose, shave your legs, shave your underarms or wash your hair…which did you choose? I also am an owner of a rollator, but the kidlets like being pushed around on it when I do not have to be. Next up, I think, is a wheelchair.)

If you have these symptoms and have been made to feel as if your symptoms are ‘in your head‘ and you’re crazy by your doctor, it’s time to move on and find a better doctor. There are good doctors our there, though at times they seem as elusive as flying monkeys, yellow brick roads, lollipop kids and rainbows. Sometimes we have to search for them, but they do exist. I won’t be skipping down the yellow brick road any time soon, but maybe one day, or maybe I’ll find a little pot of gold at the end of a rainbow.

Elephants, Collisions, and Oh No!

Seems as though I’ve been on an unintentional blogging hiatus, but I’m back! Missed me didn’t you? Go ahead you can admit it. Okay, so I probably only have three readers, and they’re family who feel obligated to read my ramblings, but hey…I have three readers - go me!!

I want to keep it on the lighter side and I’ll start with Princess. She’s a whole hand now, and very big as she just celebrated her birthday recently. She asked me to no longer call her Tiny Girl when we’re in public because “I’m not tiny anymore.” She’s so cute. For her birthday she wanted to go to the zoo. This visit she wanted to see three specific animals. First, she wanted to see and feed the parakeets, next she wanted to see the pandas and lastly, the elephants. Sounds cute doesn’t it? Let me delve into her little mind for you a bit more, so you can fully appreciate this visit to the zoo.

At our zoo there is a parakeet pavilion where hundreds of brightly colored parakeets fly around. There’s a sign as you enter the area that says “Poop Happens” warning you to be careful where you stand as the birds may leave you with a little more of a souvenir than that shirt you wanted to get from the gift shop. Fortunately, no one was pooped upon and Princess did get to see the parakeets. This trip to the zoo Rotten Pap and Granny came with us. Super Hubby bought treat sticks from the gift shop so the kids could feed the parakeets. The birds sit in small branched trees and wait for these treats. Some are more friendly and less shy than others, but if you’re patient you’ll get to hold a parakeet as they hop onto the stick with their treat. Rotten Pap, he’s as bad as a kid, he had to gently shake a branch some parakeets were sitting upon and watch them jump off flying around. A bit later, the birds all went crazy flying to and fro, it was like one of those horror movies where crows are swarming the unsuspecting victim. Only these were beautifully colored and less “I want to poke your eyes out and eat them”. After everyone had fed and held a parakeet, we moved on.

Up next, Pandas! She loves pandas, has many stuffed pandas with various names containing the word ‘Panda’. Let’s see, there is Pandy, Baby Panda, Panda, and her most recently acquired panda shocked me when she named her Kacie. I thought surely it would be Panda 2.0 or something - I guess she really is getting bigger. Everyone watched the Pandas for a while and then Rotten Pap pointed out the panda poop to Hot Rod and Princess. Very informative and educational that Pap is! Later that night, as I asked her “Well, what did you think of getting to see the REAL Po?” She said, “Yeah I liked it. But Mommy, why wasn’t he wearing his orange shorts?” I laughed, and told her "Remember that poop Pap showed you? Well that’d be pretty messy to clean up, since you can’t potty train a panda.” She accepted that answer, lol.

Then remember, she wanted to see the elephants. Well it was not just the elephants she wanted to see, she wanted to see an elephant poop. She wanted to see how they pooped and how big it was. I tell you, these kids do make me laugh. She did not get to see the elephant poop, but at least she got to see the elephants. She was happy enough, and we all still think it’s funny that she wanted to see an elephant poop.

Granny and I rented those little motor scooter things as she’s working with a replaced knee and I’m dealing with MG. Might not be able to walk the zoo, but I can certainly ride a scooter and we can see and do what the kids want. They’re not missing out on the world just because I have MG, I’m happy about that.

Hot Rod is doing great, he’s such a big help to me and is so very smart. He was talking a few nights ago to Granny, Princess and I and told us “When two people get married, they kind of collide and Boom! God gives them a baby.” There is truth in that statement, if the ‘collision’ comes together just right and God sees fit, that’s how babies get here. I laughed and laughed, told him ‘Technically, I guess that’s right.’ I just know the “Talk” is coming soon. He’s already asked about puberty, and I gave him a very PG description of the changes he’ll undergo and what to expect, for now he’s content with that but the next time, the bigger “Talk” I think, Super Hubby is going to need to be involved with.

No matter how these two people collided in order to get them, we surely have been blessed with two wonderful children for whom I am very grateful.

And now for my embarrassingly hilarious (to me) story.

It was my week of PEX, and Rotten Pap has been taking me to the hospital, Granny has been staying with the kidlets and the Hubster has been able to concentrate on work without having to take more vacation days to take me. (I tell you I have married into the sweetest, most caring family in the world, and no, I won’t share!)

The last day.  I’ve made it through a few bumps and finally it’s my last day. I’m tired, didn’t sleep much the night before and my stomach is bothering me. Therefore, before going into the dialysis unit (which is where they do PEX) I stop off by the restroom; I don’t want any more of those pee pan incidents! I’m early and get to the unit, knock on the door, they let me in and the nurse starts preparing me for PEX. She has had to step away and my stomach is still bothering me, so I figure I’ll ask to use the restroom once more. Surely once more and I can hold it for a few hours until my treatments are over. Agreeing to my request, she just warns me to be careful of the catheter I have in my chest.

I head to the restroom and do my private business. I feel better now. Ah, yes, I’ll be able to wait until after treatments before I need to go again. I sigh in relief as I flush the toilet and start soaping up my hands. Water is running in the sink and I’m doing a good job to scrub up my hands. Uh oh. Houston we have a problem. I look over at that toilet I had just done my private business in and it’s getting higher and higher. In two seconds flat, that sucker is overflowing. Quickly I scan the restroom for a plunger. NONE! Oh goodness. I get to the door as quickly as I can, with panic in my voice “The toilet! The toilet it’s overflowing!” No this isn’t an April Fool’s joke. This is Friday the 13^th and my private business is no longer private - to anyone! Today I guess JK Rowling’s Moaning Myrtle came to play. My nurse wasn’t right there when I come scrambling out of the bathroom door so I have to shout my problem once again. She comes rushing over and sees it! “Oh no, Oh no!” She shouts.

Another nurse comes out to the rescue, I hope. She’s on the phone, on a conference call, and here I am red faced, no plunger, my business on the floor and soapy hands that I have been able to finish washing. “Oh my goodness!” the other nurse says in her pleasantly accented voice. The first nurse, my nurse for the day, has begun gathering bed linens and laying them in the floor as Mount Poopmore has begun rushing out the restroom door. Sheets, towels, blankets anything she could grab and toss at this craptastic mess, she’s doing. I begin to try to help her make a barrier to keep it from flowing into the unit any more. Finally, the toilet has stopped running over but the damage has been done, to the floor and my pride and I still have soapy hands. My nurse tells me I can use another sink further down in the unit and I go scrub my soapy hands clean.

As I wash then dry my mitts, I hear the pleasantly accented nurse calling for assistance. “Yes this is so and so from dialysis and one of our patients went number two and the toilet has overflowed into the floor.” Wow, couldn’t she just say the toilet runneth over? Did she have to announce that I pooped and the toilet’s spewed it all over the floor? Nah, this unit they have to point fingers and cover themselves so I guess that’s the case if the toilet runs over too. My nurse, I really like both nurses today, she tells the pleasantly accented nurse that this has happened another time. *Queue the brow swipe!* I’m not the only one who has broken the toilet.

My business lies mockingly on the floor, for all to see for quite some time as we waited for maintenance, then housekeeping. It was embarrassing, and you’d think I had pooped as much as that elephant Princess wanted to see, but really, I didn’t nor did I fill the toilet with massive amounts of tissue. Next time, before I start PEX, I’ll use the restroom down the hall. I don’t want to take a chance on Moaning Myrtle overflowing the toilet again! On the bright side, I didn’t need a pee pan!

Pee Pans and Frankenports

Plasmapheresis (PEX) day three has finished, and oh my what an experience it was. Here’s a rundown of the past few days:

Day One:

I’m a little anxious. I have to have a temporary catheter put into my neck by an invasive radiologist (IR), so..surgery. I don't care what anyone tells you, when they shove a tube down your jugular, it hurts. The IR was apprehensive to do the surgery because I'm on blood thinners, so he was even more cautious than he would have otherwise been, I hope. There were no pain medicines given during the surgery, only a local anesthetic which wore off before he was finished. He would say "You're going to feel some pressure" but I'm pretty sure he's never had a catheter shoved in his neck, because that was definitely more than pressure. Moving the wire thing in and out, and the stitches, I felt those too. But the Frankenport was needed in order to start the PEX, which is needed in order to feel..."Alive" (said in my best Frankenstein's creator's voice)!

Ah yes, my lovely Frankenport. For those who have no clue what I mean, think of Frankenstein. Remember the bolts in his neck? Well, I have more of a water hose effect going on. One big hose, shoved through a large vein (my jugular) down to my heart, where it exits the skin in my neck it separates into two hoses one capped with blue and one with red, and that, my dears, is my Frankenport! Kind of gross, I haven't looked at it when the nurses remove the dressings, I figure I don't need to see anything other than the water hoses spouting from my neck!

After the Frankenport has been inserted, the IR nurses wheeled me off to the unit to get the PEX. What is PEX? Well, isn't this just one big medical science class today! PEX is the way lazy people, like me, write plasmapheresis or plasma exchange. And that, pretty much says it all. Plasma exchange. My plasma, and all of those antibodies attacking me, is filtered from my blood and in its' place I receive my plasma free blood, albumin (a protein found in your blood) and fresh frozen plasma (FFP), which is an oxymoron. Anyway, FFP looks a lot like orange juice and the plasma they remove from me looks like apple juice. Anyone thirsty yet? This process takes about two and a half hours, plus prep time. So less time, in all, than the IVIg, that's plus! Another plus? It seems to be working so far!

I reacted to the FFP. I started getting numb and tingling around my mouth, began to get nauseous, head started hurting, eyes went crazier than normal, things started getting dark, my skin was cool and clammy and my blood pressure dropped. I started to pass out. It was amazing seeing how quickly dropping the head of the bed can raise one's blood pressure! I was given more benedryl, some anti-nausea meds, calcium, and more saline and felt better soon after. PEX had finished, the nurse taped down my Frankenport hoses to make them more secure and I was sent on my way, with instructions to keep it dry and not let even one drop of water around it. One day off and I'll be back.

Day Two:

I'm not nervous today, because there is no surgery beforehand and I know what to expect now, I think. My bandages are removed along with skin, I don't think the makers of those nifty clear plastic band aid things realize that people need their skin. The adhesive has to be industrial strength epoxy or super glue, I think. Next, as if the burning from the removal of the first few layers of skin wasn't enough, here comes the alcohol wipes! Oh well, better to set one's skin aflame than to have an infection set in. The nurse hooks the hoses up and PEX begins. I’m almost finished and those feelings I had during the first exchange set in. I almost pass out again, blood pressure drops to 80's over 40's, but again that neat ‘head of the bed drop’ does the trick, I get more benedryl, and then a little more and PEX day two is over. Well, not exactly. She tapes the hoses down and I leave the unit, go to the waiting area to get Super Hubby and our kidlets and I'm itchy. Great, now I have hives. Really? I'm still ready to blow this popsicle stand, but the voice of reason...otherwise known as Super Hubby, makes me go back to the unit and let them know! Darn him and his sensibilities! The nurse called the doctor, who said to give me more benedryl and THEN I get to go home. I think they could've just given me horse tranquilizers and called it a day!

Yesterday I was feeling a little stronger. My hip and knee are stronger, my breathing is doing better, and I actually cooked a real dinner for my poor, starving family AND I did the dishes AND wrapped the presents (for our gift swap once we finally get to go to Super Hubby's Awesome Family's)! I'm quite impressed, this is a lot for me and I'm proud of myself.

Day Three:

Nervous? Nope. I know what to expect - some sort of allergic reaction, tons of benedryl and the shedding of more layers of skin. Right? Wrong! Today was humiliating, I was mortified. Remember how your mom, as a child, would tell you "Now, Jane go pee on the potty before we go, you don't want to go while we're there!" Well, today I peed before we left the house, like the good little girl I am. Then on the way I decided I needed to visit someone else's facilities. Ah, that should be good. We get to the hospital, I go to the unit and they let me in, point me to the bed I'll be lying in for the next several hours and begin the PEX set up. And we're off to a good start. I inform my nurse today "Just so you know, I tend to have some sort of reaction and my blood pressure drops and I tend to get nauseous once the FFP begins, so I'm not sure if you want to give me the anti-nausea stuff before we start the FFP or wait until I need it." Proactive! I we're about ten minutes into the treatment and it hits! You're kidding me, I've drank just enough to swallow my morning medicine cocktail and that's it, and I have to pee again!

Okay, I normally have a bladder of steel and I'm figuring I can hold this, no big deal. Not today, I guess...

Me: So, um what happens if I have to go to the bathroom? I know we can't stop this once it's running.

Nurse: We'll get you a bedpan.

Me: A bedpan? I, uh, I've never used one of those before. Hopefully I can hold it.

Nurse: Oh, it's okay we'll show you how to use it.

Me: I'll try to hold it....

Time elapsed, maybe three minutes...

Me: I...I don't think I can wait the two hours before I have to pee.

Nurse: Okay I'll grab you a bedpan.

Me: *Face bright red* Okay.

So, the nurse comes back with this little plastic pee pan for me to use. She draws the curtain as much as possible, which means that I get one side and the end of the bed closed off. The rest of the area is free for everyone to watch me struggle with my predicament.

Nurse: Okay pull your pants down and raise your bottom.

Me: Now? (Shouldn't they like, stand guard and make sure no one else is going to watch me pee the bed here? Like an army of nurses walling off my privacy...right, we're in a hospital, there is no privacy!) Are you sure I'm not going to break that? I mean, will that hold a fat person like me?

Nurse: *laughs* It will hold you, you won't break it.

I think she thought I was kidding, but I'm serious man! But I'm also getting ready to pee this bed, so I drop my drawers, raise my butt and let the friendly nurse shove that pee pan right under me. Now what? I've never peed laying down, well not since I was a baby in diapers, and never on a medical mauve colored pee pan! But she told me to pee so I start...OMG I shouldn't be feeling this here...right? I squeeze off the peeing and wait for her to come back, trying to pull my shirt to hide my lady bits, and ask, with urgency...

Me: I don't think I'm doing this right, I shouldn't be feeling this should I?

Yep, that pee went right on the bed. I reposition the pee pan to where I think it should be and finish up, and yes, my face is even more red. I'm humiliated, I've peed in front of some lady hacking up a lung colored with an unhealthy yellow complexion, some man who has come from his room upstairs, a couple of nurses and a nurse's aid. Not only did I pee in front of them all, I peed the bed too!!

Nurse: Oh it's okay.

What, pray tell me, is okay about this situation? That she's now telling me to roll over onto my side while my pants are still around my knees....we don't know each other like that, man! I am not comfortable. Can I at least get some baby wipes and clean up a bit? Take me to dinner or something...

I clean myself up, she changes the peed on bedding and I'm mortified! Time passes, I start tingling so she gives me some stuff to counteract it. My BP started to drop, but I knew what to watch out for today, so when the eyes went wonky she lowed the head of the bed and I was better. We're in the home stretch - the finish line is there, in the distance and I have to pee, again! There's no way I'm peeing the bed twice in one day! So I asked how much longer we had, about twenty minutes. I squeezed my legs together, prayed to the whoever the saint of bladder control is and God himself that I can wait until we're finished. It worked! I was nearly crying tears of urine but I held it until the PEX was over, then I darted over to the bathroom.

Okay, I lied. I can't dart anywhere, but I walked as fast as my gimpy self would let me, and relieved myself, thanked God, the saint of bladder control and the makers of indoor plumbing! Oy, I pray Monday goes better. I'd rather have the allergic reactions than a repeat of my pee pan mishap!

It's a Bird, It's a...No, I Guess It Really Is a Bird, A Whole Flock!

 

Another Christmas has come and gone and I have much to be grateful for.  First, the most important reason for the season, we have the ability and the right to practice religion and celebrate the birth of Christ!  What better gift than Jesus have we been given?  (totally rhetorical - totally...we'll get to that).

 

Next, I am grateful for my family and friends who love me, and I them in return!  Our kids were up until after 2 a.m. on Christmas Eve, watching our Christmas movie and didn't wake up until after 12:30 to open presents.  My Super Hubby, how I do love that man!  He went downstairs and set the cameras up and waited so he could video the kids while I took pictures.  He knows I don't want to be in pictures as I look like the Stay Puft Marshmallow Man from Ghost Busters - I am serious...paint me marshmallow white and we'd have a winner!  So, I took snap shots, he did video, our kids did the tearing off of ribbons, bows and paper.  I loved watching them be so happy. 

 

Gathering the gifts into piles so each had their area of presents to open and a small area of presents for them to share.  Princess, she's all about getting the job done.  The rule is, after all, no playing with your gifts until you've opened each present.  We have to have this rule.  Otherwise, Hot Rod will open one gift and sit and play with it for the rest of the day while he forgets he had others to open.  So, Princess would rip her gift open, ask what it was, then toss it into her plastic bin (to keep their gifts together and bring upstairs later) and move on to the next.  "Wow, make up!  I totally wanted more eyeshadow!"  *toss* NEXT!  That's how it went, for the most part, with her, lol.  She's "totally" into everything...she should've been born in the 80's with her usage of the word totally. I find it comical, and can't help but giggle each time she declares something totally this or totally that - I'm totally laughing.

 

Hot Rod was excited about his presents, but wanted to make sure everyone was happy and getting their presents in their own piles at first.  He would open his gifts, look at it, read the box, then ask if he could go ahead and open it, while the rest of his presents lay neglected like broken misfit toys in Toyland.  So we'd tell him we will open them up after you finish opening your presents go ahead and put it in your box.  He was pleased with his gifts and I think he liked that his Awesome Daddy got him some big kid tools.  He got his very first level, measuring tape and screwdriver set...which he used to open his Beyblade thingy majigger.   Yes, that's the technical term.  I have no clue what half of that Beyblade stuff is, he points, says it's awesome  (and a lot more words that kind of go over my head) I smile, nod and make a note "this is the thingy majigger he wants...check!"  

 

Our kids are loving, caring, compassionate people and I am grateful for that too.  They hate to see others less fortunate, to see that someone doesn't get something, and they want to make all right in the world at times.  Makes me one proud Momma!  At Subway Hot Rod found a penny on the floor which had patina on the front.  He turned it over in his hands a few times, showed me, and then as we were checking out he said "I'm not sure if I should keep it or give it to them" (meaning the people working at Subway) and pointed his thumb in the worker's direction.  So I told him it was his found coin and the decision was  his.  He chose to give it to the workers. He dropped it in their cup and said "Well, I know it's not much, but it's better than nothing I guess." shrugged his little shoulders and began walking away.  My heart swelled and his dad then gave he and Princess both a dollar to give the workers.  The kids wished them a Merry Christmas and we took our subs to go home and eat. 

 

While we were at the store, the kids were upset that they had no gift to give me, they wanted to buy me something.  I don't need anything, but they want me to have one to open, I'm tired, we're in the check out line I have an idea.  "Oh you know, you see that over there (the junkfood/candy bars/chips)?  You could go over there and pick me out whatever you want me to have and I'd love that!"  That made them happy.  I got Puffy Cheetos and Reese's Cups from Hot Rod and Cheddar Sour Cream Ruffles and a tiny bag of crunchy Cheetos from Princess.  It's the snacks they love!  I love that!!  Then they came home and wrapped them - adorable!!  For Super Hubby, he got some caramels he loves, a bag from each of them, and some pants he wears around the house and was in desperate need of.  They wrapped those presents too.  Those were the most important presents for the kids, they had to know that we had opened and loved their gifts to us.  I surely do love those two kids of ours!

 

All in all, we had a good Christmas Day.  Might not have been idyllic, with me up slaving away over a hot stove of food making sure everything was perfectly decorated, cookies in the oven, bows just so on the presents but it was our Christmas.  Our kind of Christmas is probably going to be a little different than most.  Our meal was mostly microwaveable sides, a precooked ham you just glaze and heat up, and a frozen boston cream pie, but it was our Christmas meal.  Prepared largely by my wonderful Super Hubby, whom I could love no more as it's impossible!  He, and those kids...THEY are my Christmas gift!  They are the reason I try to get out of bed, or this recliner in the mornings.  The reasons I push to try and get through treatments, grocery stores or ball games.  I am not the best, and sometimes I feel they deserve so much more, but for some reason this is who I have become and this is who Super Hubby decides to love and be with and my babies, our babies, they love me and try so hard. 

 

Hot Rod does have a hard time expressing the way he feels, hearing the words Hospital...go today...won't be home at Christmas...then bigger words like Plasmapherisis...I know he's worried.  So I've made an effort to try and pry those lines of communication open for him since he won't do it on his own.  I told him that I knew the neurologist had scared him because he wants me to go to the hospital, but I think we'll be okay to wait.  If I get worse, I'll go in, but I did my IVIg  here, at  home trying to get better, then next month I can do the plasmapherisis.  So I told him what has to happen, now to "kid-fun-it-up", I tell myself.  "Hot Rod, do you know what Plasmapherisis is?"  "No"  "Oh, it's kind of cool, you know how I get extra antibodies when I do the IVIg?  Well with the Plasmapherisis - that big word, it just means they're going to take my blood out and run it through a machine to wash it, then put it (the blood) back in me!  How cool is that!  That they can wash away the bad antibodies for a little while!"  It's all about presentation folks.  He's talking now, he thinks it sounds cool.  He doesn't need to know any risks, or anything, just that Mommy gets to do a cool treatment where they take her blood out and wash it then she gets it put back in.  And he thinks it's funny that I'm going to be "So bored because I have to lay there, all still, while they do that and have NO ONE to talk to...while you...you're off playing with your new Christmas toys."  He giggled, that means he's listening, he's not shutting down, and he's seeing that it's not something to be too scared about.  For that, I'm grateful and I think it helped when I went to my GP and was diagnosed with a sinus infection, bronchitis, and moderate restriction because I had told he neuro I'd go to the hospital if I got worse, hearing what was wrong, is minor in comparison to a crisis.  So now he sees, "Well, mommy doesn't feel really well, but that's because she has a big cold and she doesn't need to go back to the hospital! 

 

Now what I'd really like to happen is to not feel the eyes of 20 vultures on me looking like they're ready to swoop down and scoop me up if I get any more gimpy.  Yes, I said vultures.  Those birds who eat dead thing they've been lining the trees outback, looking toward our house - kinda creepy.  I told Mark they were coming to get me if I started to look any more dead.  Good thing they didn't see me fall out of the car, otherwise they might have tried to swoop and attack!  Yes, I said I fell out of the car.  I'm become quite well acquainted with gravity and how much gravity loves me!  Evidently it loves me so much it wanted me to hug the garage floor after getting back from the store!  I opened my door, turned to get out of my seat and it happened.  *BAM*  Right down I went there in the garage.  My leg was weak, I guess a little more than I had anticipated as trying to stand up and put all of your weight on a leg that is on vacation isn't a good thing.  Mark got me up out of the floor...aaaagain....and I stubbornly decided to heck with this!  I'm wrapping these last couple of presents if it kills me!  And I stormed off to wrap them.  Okay, okay my "storming" looked more like some old lady who just had her hip fixed, fell and broke her knee and is shuffling through the house with her arms outstretched to hold her balance...but either way...I got those presents wrapped and then Super Hubby came and fixed my knee up.  So, I need to be careful, a fall like that outside could've set off the flocking of vultures and I could be telling this not so funny, stupid story while missing chunks of hair, skin or eyes!! 

 

Yesterday we took the kiddos to their eye appointments.  Hot Rod's eyes are getting better (yay!), and Princess needed new glasses.  She's totally okay with that, she picked new frames.  After their appointment, yet before going to buy her glasses we made a stop...at a medical supply store.  Yep, I officially have a rollator/transporter/thingy majigger.  Not something I thought I'd ever need at my age, but if it helps and allows me to walk without falling, or rest when I get too weak to walk, it's worth it - or at least that's what Super Hubby tells me.  The kids aren't embarrassed by it, maybe when they're older they will be, but for now they're not.  Instead they're pretty pleased with it.  As we walked through the mall to get Princess' glasses and Christmas Swap presents the kids sat on it and I pushed them.  It served a few purposes:  1.) It helped me walk, 2.) I knew where the kids were and 3.) The kids got to be lazy and not have to walk -multifunctional medical equipment, yay!  While in the store picking it out, the kids sat on every power chair, power scooter, power anything there was in the store and they kept trying to convince me that I needed one of the said power whatevers.

 

I hope you all had a wonderful Christmas with those you love, family, friends, pets....or alcohol (I kid, I'm not a drinker - but if you are have at it!!).  Life is short, sometimes it sucks, but remember those around you, those who love you - don't forget to look for your blessings, because they might not be right there standing in front of you, they may be hidden under shy smiles, whispers, in a dirty penny from the floor, or from the kindness of strangers (thank you lady at Walmart for asking if I wanted to use your motor scooter thing as I walked into the store)! 

 

And we're off to 2012, which will hopefully be a better year for us all!! 

Good Deeds and New Family Traditions

As I sit down to type this, Princess decided she wanted to come sit with me.  I said "Here, let me get my neck pillow first."  She said "Yeah!"  I said, "Why is that, why do I need to make sure we don't lose my neck pillow?"  She looks at me and says "Because your head would fall off..."  So, rest assured my friendly readers, I haven't lost my neck pillow so my head has not fallen off as I type this out.  It does ramble, however, so I warn you ahead of time. 

 

Tonight our family was shown that there are still good, nice, kind people out there in this crazy world we live in.  It had been a long day, Super Hubby had to go in to work to test something that has to be given to a customer soon and the kids and I went with him.  Luckily there is Internet access and the kids watched netflix and played games while Daddy worked and I...well I just took up space, had a fan blowing on my face and my head was all flopped backwards.  So glad none of his co-workers were there.

 

After he completed the testing we had to return one of Princess' toys to Toys R Us.  Evidently the present she most wanted, a microscope, had terrible reviews about it not working so there's no sense in having a microscope if it is unusable.  We didn't buy another gift in its' place yet, instead we went to dinner because we were all hungry and it was late.  This is when we were met with kindness, a few times.

 

As we were in the parking lot a girl pulled out of a parking space right in front of the door, so I didn't have to walk far.  My legs were grateful.  Then walking to the door, my husband held the door for another couple, the lady walked in and the gentleman asked me to go ahead so he could get the door for my husband since "He's holding the baby.".  Most people just shove on in not caring that you're being helpful without so much as a thank you.  Instead they thanked us and helped us, this is the Christmas spirit which seems to be lost lately. 

 

We were all taken to our separate tables where the kids ordered foods they wanted and were told they could have a cake if they ate well.  They needed a treat for being so good the past few days.  We sat and ate our food, and it was nearing time to order their dessert when a gentleman walked up to our table with dollars in his hands and asked  us if he could give it to our children.  He wanted to give them something for Christmas and gave two dollars each to Hot Rod and Princess.  We were very touched that some stranger would do that, wishing our babies a Merry Christmas and smile as he headed back to his table. 

 

The cake came, and Hot Rod and Princess consumed nearly the whole chocolaty mess and I needed to go.  (Darn MG sneaking into our night - chest pain pressure, tightness, squeezing sensation, hard time breathing....um...check please, lol).  I couldn't leave without letting the kids once more walk to the gentleman's table and properly thank him and his company for their great deed.  So Hot Rod and Princess both walked to the table with a party of four and gladly said "Thank you for the dollars, Merry Christmas!  I really appreciate it!"  I am so proud.  Proud of an unknown man, his spouse, their friends and of course our children.  The man and his wife evidently are trying to conceive or  have one baking as he said we had lucked out by having one of both the first go around (a boy and girl) and that they were hoping to do the same.  The other couple with them were all smiles and wished us a Merry Christmas.  As we left, everyone was in smiles, everyone wished each a Merry Christmas, not Happy Holidays - but Merry Christmas as Christ is truly the meaning of this season.   

 

They're growing so quickly, yet I want them to grow the way one should.  Without fear of offending someone by saying Merry Christmas.  To thank those who speak to them, or compliment them, and to be appreciative when one offers you a gift, whether it is monetary, meaningful or heartfelt gifts.   I told them that the money the nice gentleman gave them was no better than if he had come to the table and simply said Merry Christmas, your kids are so adorable as he did when he handed the money.  They got that, they really understood that the money wasn't something he needed to have done.  I am proud of everyone.  What a wonderful Christmas present we received tonight.  I feel very blessed.

 

Earlier this week my sweet baby girl came to me, completely out of the blue with this:

 

Princess:  "Mommy, you know if we didn't have any Christmas presents it would be okay.  Do you want to know why?"

Me:  "Aww, yes I do.  Why would that be okay?"

Princess:  "Because we still have each other!"  And she gently hugged me, and I smiled as much as a big fat woman with a moon face can smile. 

Me:  "So, do you think I should go ahead and take your Christmas presents back then?  Since we have each other I could take back what we got already."

Princess:  "Well..." *pause*  "...it would be okay.  But I'd really like to have some of them." 

Me:  "But you said you didn't need them since we have each other." 

Princess:  "We don't.  I'd like to have them but we don't need to have them." 

She makes me smile, and yes, I assured her we weren't returning her Christmas presents that she could keep them.  The one that she has her little heart set on is a tiny white box, she asks all the time what I think is in there.  I think that's probably going to be the first one she goes for when opening presents on Christmas morning. 

 

Hot Rod is getting too big for the snuggles and cuddles, but I'm still convincing him to let me hold him for a few minutes here and there.  Tonight he was over it and told me "You know Mommy your breath is really hot!"  I said "HOT or warm?  Are you telling me my breath stinks?"  He laughs and said "No I'm saying your breath is hot and I'm getting so hot I'm going to throw up if you don't let me up."  I laughed, and let him down...I must torture the poor thing if the only way he can figure he'll get to be released from my clutches is the threat of vomiting on me.  Tomorrow, oh yes, tomorrow I have plans.  I plan to sit and snuggle with them both for a while.  Curl up and watch a movie together with them, and enjoy my snugglebugs - they'll like it if I give them chocolate and a good movie I'm sure.  Me, I'm just hating they're growing so fast, yet I'm grateful they are able to be growing, healthily!

 

I'm glad that we're raising some pretty great kids.  That they think of others and not just themselves, that they're funny, healthy, happy, and full of lots of energy...okay most of the time I'm glad about that.  When it's in the wee hours of the morn and they still have that energy that's the time I'm not so glad about - the over abundance of energy when toothpicks to keep your eyes open isn't just because of the ptosis caused by MG but rather pure and utter exhaustion between kids all hyped up on chocolate, sweets, mountain dew or whatever it is that kids get that wears off before becoming an adult and me being all spazzed out, yet still not able to do anything though I'm all hyped up, on mega doses of steroids. 

 

Hot Rod and Princess both want to go and buy a present for the other for Christmas.  Hopefully we'll get that done within the next few days.  And hopefully their presents will be wrapped before Christmas morning!  I'll try to work on the wrapping tomorrow, but Princess still needs one thing to replace her defunct microscope.  Hot Rod wants to get her whatever he knows she'll love, she wants to get him something she's certain he'll love - another Beyblade.  So, another trip to Walmart might be in my future, unfortunately. But they're worth it.  I think it's awesome they're thinking of others, not just themselves.  Just as they thought of those Paper Angels from the Angel Christmas tree at church they helped.  They're always so proud when they know they've done something good for someone else. 

 

Well, I'm off to watch our Christmas movie with the whole family (our new family tradition) - yes, even Super Hubby is taking the time to watch it with us tonight.  Merry (early) Christmas to those who read my ramblings.  (And I'm sure this one does ramble a lot as this night night meds is making me all loopy right now, lol.)

Insomnia, Angels, Spree and Songs

It's been a while since my last update, insomnia keeps me awake, so what better time to update than at 4:30 in the morning when all of the sane people are in bed, right?

The holidays are upon us, and Thanksgiving has passed.  We spent a quiet day together, my family and I.  I made our Thanksgiving meal without the loss of a single digit, burn, or fire I'd say that in itself was a success!  My amazing hubby and our wonderful kids did what they could to help me create our "feast" as Hot Rod and Princess called it.  As we ate leftovers, Hot Rod declared "If we have enough leftovers to have our feast one more time it will be like the first feast!"  The first Thanksgiving, was said to have taken place over three days of good eating, he retained that parcel of knowledge. Such a cutie he is!

At church we have an Angel Tree for needy families and children in our area.  As you may remember from a prior post, Hot Rod and Princess wanted to give their money to people less fortunate than we are, so we took two names from the Angel Tree.  Each angel has what the children wanted on it, the boy wanted a pair of tennis shoes and the girl wanted clothes.  Breaks my heart that they are so in need that such young children are asking for clothing rather than a toy.  Hot Rod wrote himself a list of what he wanted to get the little boy, a pair of tennis shoes and some Beyblades "But he needs to have at least 2 Beys so he can play with someone else!".  So thoughtful and caring, he is.  He actually wanted to write a note telling the little boy how to play Beyblade but I told him it was unnecessary as there are directions in the package.  Princess had me write a list for her so she could "check mark off what is on my list" she said.  She got the little girl two pair of jeans and two shirts and of course she needs some sparkle added to that, so Princess picked out a necklace for her.  Whether or not the children like what gifts were purchased I will not know, but what I do know is it felt great to watch our children be able to and get excited about giving to those children who were less fortunate than us. 

My wonderful hubby has to do so much around here any more, as I am simply falling apart I think.  He dragged the Christmas tree up from the basement and put it together for me, plugged it in and found that several sections of lights were out on the tree.  So, I began pulling and testing lights until I found enough blown lights and replaced them with new lights that the tree is now properly lit.  Hubby put the angel on the top, I strung the beads and put the ribbon on, as well as the glass ornaments then the kids finished decorating the tree.  It was a group effort getting the tree up and what little decorations we have out.  I have yet to finish wrapping presents but I did get the kids' presents bought. 

We went to only two stores, Sam's Club and Toys R Us.  My amazing hubby and our wonderful children gladly pushed me around in a wheelchair so I could shop.  I was embarrassed at first, needing a wheelchair.  But by the end of the trip, not only had I made it but my head hadn't completely detached from my neck and rolled onto the floor.   It was touch and go there for a minute when I wasn't sure if it was going to fall off or just dangle, but dangle it did and I'm here to type this.  In all seriousness I just get so weak any more, I can hardly hold myself upright on the bleachers watching Hot Rod play basketball, and by the time it's over I am a pile of jello from trying to hold myself upright.  It's ridiculous, frustrating, and pathetic!  I'm praying I get the presents wrapped in the next two weeks, and the presents for the rest of our family purchased before Christmas!

I'm still waiting for the miracle of remission, maybe I'm not holding my mouth right, squinting my eyes just right, taking the right combo of meds or something because I don't feel I'm getting much better.  Oh yes, poor pitiful me, waaah waaah waaah!  I can't help it.  I try, really I do, to not let this get to me.  To find the humor in all of this, but some days it's so very, very hard, other days it seems impossible.  At least I'm alive!  Right?  That's what I tell myself, at least I'm still breathing.  But sometimes breathing gets scary.  So, between my whining I'll tell you what I think was hilarious.  Try imagining this as I tell the story of how I scared the crap out of my infusion nurse. 

My infusions are long, they last at least four hours and have been going as long as six.  That's a long time to sit and be hooked up to tubes and pumps, I.V. poles and tethered to a chair - or so it seems.  Bathroom visits are inevitable as you are supposed to drink more before, during and after the infusion as well as the bags of fluids the nurses run with the infusion.  So I like to have a snack too.  Last time it was Spree. 

Chewy Spree candies, pure sugar, chocked full of artificial dyes and flavorings, nothing good for you at all in them, but they taste pretty good.  So, I got me a small bag of them when we were at the store, specifically for my infusion.  I'm sitting here minding my business, nurse is sitting on the couch, we're watching the Twilight Saga - I'm not sure which movie we were on at the time and it happened. 

I knew it was going to, the warning signs were there but I kept eating those tart, yet sweet, chewy candies anyway.  When suddenly, it happened!  *Cough* Uh oh *Cough...Cough*  Oh crap I can't breathe *Cough, Cough, COUGH*  I can't stop coughing, that nurse she jumps up, runs over to me, flailing her arms in the air, "What's wrong, what's wrong is it the medicine?!"  She's freaking out and ready to call 911, Hubby is sitting at his desk, calming her down, "Oh it's okay, she's okay this happens."  Nice and calmly he tells her that, she's standing over me, turned the pump off, I'm hacking up a spree, a lung, and I don't know maybe a little intestine is coming out too.  I'm bright red, and still coughing, nodding my head trying to let her know I'm okay.  Breathing isn't happening, start having trouble breathing but the coughing stops. 

Finally, I'm breathing again, coughing between deep-ish intakes of air,  I smile, thinking "Wow, I just scared the heck out of her, she's all ready to call 911, had no idea what to do for me!"  That's pretty funny!  Then after she's settled down enough, I let her know we can keep on with the infusion, I got choked on the candy, it happens, I'm fine.  She says, "See I can move fast when I need to."  *pause* wonder if I'm supposed to go give her a cookie now?  Then she walks past me, pats my leg and says "It's okay honey, I still love you."  Like her 'love' for me was supposed to miraculously make everything okay.  She's not my favorite nurse, and she knows this, but I think she felt the need to say something reassuring and that's all she could come up with. So now, Hubby walks past me, or when I choke and says "It's okay honey, I still love you!"  Funny!

Wednesday I see my neurologist. I'm not sure why but without seeing me, he has changed the number of days I get infusions from 5 to 3.  I'm frustrated by this.  I am not doing well, I'm just getting by yet without seeing me he has deemed me to be well enough to lower my infusion days...not good.  Let's hope that he has a valid reason, another plan for me, something.  I need some hope here.  I need to get better and taking away something that gives me a little help, a little bit of hope in this retched disease, well that's not a good thing.  I feel like we have to fight for everything, for each step forward I feel it's like walking through thick mud and sometimes even quicksand.  I'm barely treading water some days and have wondered on more than one occasion lately "Is this it?  Is this the start of a crisis?  Do I need to go to the hospital or can I wait it out?"  So far, I've been able to wait it out, hospitals scare me as ours seem to know nothing of MG and there is such a long list of meds we myasthenics cannot take I risk staying home.  Staying here to be with my babies, with my husband, where I shouldn't have wonder "Do I need to go to the hospital?"  Princess is always worried I'm going to have to go back to the hospital, Hot Rod is too, but he refuses to talk about it.  I try to reassure them, I'm doing all I can do to get better.  And I am.  And I hope I do. We all hope I do...get better that is.

Tonight's Blog has been brought to you by, insomnia, chewy spree, and the song Hope For The Hopeless by Fine Frenzy.  Now, I shall venture off to LaLaLand and hope for sleep, with dreams of chewy spree, rainbows and lollipops with songs of hope for a better tomorrow!  Goodnight Ya'll!

Proud Mommy Moments

We had a garage sale, as we try to each year.  Hot Rod and Princess love it because during the sale they sell lemonade. In reality, they made their money by selling it to Granny, Pap, Mommy and Daddy - but it's theirs nonetheless.  The money they made they want 'to give to poor people'.  I sat and listened as Hot Rod and Princess had a conversation which went like this:

Princess:  "Look at all of the money we made from selling lemonade.  We can even buy stuff with it!" 

Hot Rod:  "Yeah, or we can even give it to the poor!  We can use the money to help people who are poor." 

Princess:  "Yeah I learned in my CCD that it's good to give things to people who are poor.  It's good to give them things you don't like and things you do like!"   

A few minutes later, Princess came to me and said:  "Mommy, can we give this momey (lol) to poor people?"  with quarters spilling from her tiny hands.

I smiled, my heart swelled, and I told them both soon the Salvation Army would start having people out ringing bells and taking up money for people who are poor and they could put some of their money in those buckets if they'd like.  Hot Rod then said:  "Yeah, I want to do that, and I want to take some of the money and buy food for poor people and put in the chest at church!"

They don't want to keep any of it, they want to give money and give food...they're so, so sweet and make me so very proud to be their mom!  I didn't get involved in their conversation because I wanted to see where it went and I'm glad I was able to witness it!

Before this conversation took place, Hot Rod excitedly stood and told me that he 'accidentally pulled his tooth!'.  He has been worrying that tooth for a while now and it simply fell out, and he was very happy with it!  He should go as a Jack-O-Lantern for Halloween because right now he's missing four teeth and has another one which is very wiggly.  Instead, he's decided to go as a Zombie Skate Punk, though I'm not sure how well he would be able to feast upon the flesh of others while missing so many teeth...maybe we should look into kiddie dentures for him!  If the teeth don't come in before Christmas I foresee many a serenade of "All I Want For Christmas is My Two Front Teeth".

Princess is going as Cinderella for Halloween and informed me that she knows what she wants to be for the next few years..."This year I want to be Cinderella, then I want to be Sleeping Beauty and then I want to be Snow White!"   I would say the dress up heels Granny and Pap bought her have inspired her - the only one she didn't say she wanted to be, for which she has the dress up shoes, is Belle.  She's very excited to get to go as Cinderella this year, and wants to wear her dress up heels and makeup.  I'm not sure what it is she's most excited about - the dress, heels or make up. 

While at the pet store Princess picked out a pirate sweater for Gigi to wear this Halloween.  I looked for a Dorothy costume for her as she does look similar to Toto and thought it would be cute for her but they had none, Super Hubby just laughed and shook his head.  He's not one of the people who think dogs should wear clothes - but my retort?  "She's little, she gets cold!"  he laughs more, shakes his head and I smile.  I love them all!

Super Granny and Rotten Pap are coming to visit again and help us with Hot Rod and Princess. while I have infusions and a little surgery.  While they're here they'll get to see Hot Rod at basketball practice - he will love that!  Princess loves that Rotten Pap teases her - I expect there to be many an accusation of big stinky toes, belly button bugs, and one being more rotten than the other - it's adorable watching and listening to these two people generations apart, yet born on the same day, tease each other!  And Hot Rod, I'm sure he'll be suckering Super Granny into play game after game of Beyblade...  Then us adults, we'll play some pinochle - and of course us girls will win!!

Life isn't always easy, but when you have the kind of family I married into as well as the family Super Hubby and I have created - there is always something to look around and be grateful for.

Funny Explanations And Fitting Songs

I'll start with a cute story from my Hot Rod first today.  We always try to teach the kids to hold hands and look both ways in parking lots because people driving cars can't always see little kids in parking lots.  Well, evidently not every parent does that.  Earlier this week we took our kids to the doctor for their check ups and Princess got shots.  As my chauffeur, otherwise known as my amazing husband, was starting to back up a kid who may have been all of three darted across the parking lot, behind us, and toward the doctor's office.  His mom, her friend, and a couple of other kids just lolly-gagged around, slowly making their way toward the office.  One of the kids lost her shoe, so she continued walking in a socked-foot whilst carrying her shoe and the two adults never even called after the child who could have been backed over!  Sometimes I wonder why people bothered having kids in the first place!

 

So, we take this opportunity to tell OUR kids "That's why you always hold hands, look for cars, and pay attention in parking lots."  So, Princess says, "I wonder why that kid wasn't holding his mommy's hand?"  To which Hubby and I say we're unsure.  Hot Rod, however, had a better explanation, and it went like this...

 

"Maybe they didn't really like him?  Maybe they wanted him before, but they don't now." 

 

We laughed, heartily.  I mean seriously, who comes up with that?  Evidently my imaginative Hot Rod does!  :^D

 

In other PoDunkVille news, my amazing in-laws came down last month for me to have my infusions.  They're the best in-laws one could ask for, and we all feel very blessed to have them.  Hot Rod was in Beyblade Heaven while they were here, he had Super Granny playing Beyblade every chance he got!  Rotten Pap even played once or twice, with Granny's 'encouragement' of course.  Princess was in dress up shoe heaven, as Super Granny and Rotten Pap bought her dress up high heels.  She had just asked me before they came down, "Why won't you ever let me wear high heels?"  To which I replied "Because you're far too young to be wearing high heels, your boots have as high of a heel as you need!"  She's a girly girl, and as I type this she's sporting Cinderella heels, earlier it was Snow White heels. 

 

This week I meet with a surgeon to talk about having a chest port placed for my infusions.  My veins aren't holding up very well, and during my last round of infusions they kept blowing.  My father-in-law doesn't like seeing all of the pokes and IVs hanging out, and unfortunately I looked like a drug addict by the time the week was over with all of the bruising from the IVs and he had to witness all of that.  My blood pressure spiked on the 4th and 5th day, and ended up staying elevated.  I had my blood sugar tested which was also elevated, so thanks to prednisone I am now taking more medicine to counteract the effects of it...medicine for blood pressure and medicine for diabetes.  It stinks but one day I'll be better, I hope!  Hopefully the surgeon will be able to place the port, I'll have better infusion experiences, and one day - that elusive remission will come my way.

 

Some days I feel like My Body Is A Cage.  Have you heard that song?  Peter Gabriel's version of that song just seems to fit me lately.  I want so badly to be normal, to cook for my family and not give out part way through, dance and be silly with my kids, to have a vacation from MG where I can eat what I want and not have to worry about getting choked, or not being able to swallow it, don't take nearly 20 pills a day just to make it through the day, to take a shower without my arms becoming spaghetti, to be able to walk up the stairs without having to pull myself up them, to go to the grocery store and be able to get everything on the list because I had the strength to shop and walk out to the car - which during this MG free period is not parked in a handicapped parking place...Yep, those are my dreams - that's what I'm waiting for, my remission, my MG vacation where my body has been set free just as the song says!  One day, one day the doctor will find the right combination of meds, the thymectomy will kick in, the IVIg will pull through until the immune suppressants start working...however it happens, one day I hope it does.  Until then I'm trying to be patient.