About Charlie and Beth

Beth: "My life changed for the better when a humane society staff member said 'If you got a minute, I have a dog I think would be a great dog to visit hospitals and stuff. His name's Charlie. I'll be right back!'"

Charlie: "I was so happy to get out of my cage with my buddy. He seemed so happy that I was happy to follow him. So many dogs around here are pushy and yank on that rope that humans put on us, but I was just happy to follow him. He always has nice things in store for me. Even with I was sick with the crud everyone there was sick with, he loved on me and talked to me. When I didn't feel like eating he would stay with me and pet me until I felt better. We walked out past everyone and into the lobby where a lady with a weird stick was sitting with an older lady who looks and sounds just like her. They smell a little different, and I think the older lady was a little nervous at first to meet me, but the younger lady seemed to cheer up a little when I reached out to smell her. We went into a little room with a cat tree and a coke machine and got to know each other better. I peed on the tree so everyone would know I got into the room, and we sat and talked for a couple of hours. She kept asking me if I wanted to be her dog. I didn't want to go home with my old people anymore, so I kissed her and wagged my tail. She tried to pinch my paw a little, and pull on my mouth to see my teeth. I have pretty teeth, and she didn't hurt me so I just waited to see what she would do next. She stood up and banged her weird stick on the floor and dropped it. I looked at her to see if she was crazy, but didn't say anything. There was a really loud banging on the door, so I turned to look, and realized it was my friend checking on me to see if these people were nice to me. I think the ladies were shocked at how quiet I am. Maybe that's a good thing, because I'm not staying in the cage anymore! I'm going to be Charlie Majors - and learn how to help my new human every day!"

Beth: "Charlie and I started our journey together in December of 2013. Through extensive training, he has overcome food aggression, and fear of the car. He has learned basic obedience and also service dog tasks. He has become someone I trust with my life every single day! He helps me from the smallest tasks like picking things off the floor, to helping me do the shopping and laundry."

I feel a SURGE of energy!

(No, Charlie didn't have any soda!)

If I had this and a bottle of Mountain Dew livewire, I'd be set! ...I'm pretty sure I'd still be asleep right now if Steve hadn't woken me up at noon with breakfast in bed and SURGE! Today has been a very bad pain day.

 Yesterday we had to work on conquering fear with Charlie. Steve was horsing around with an empty paper tube, and scared Charlie really badly. What started out as just being bored and playing with a tube became a 30 minute ordeal of exposing Charlie to loud, random foghorn like sounds from the tube. It was a big deal. He had to sit, lay down, and also expose his belly while focusing on me and receiving praise and petting. He couldn't have his way, and the ordeal was only over after he relaxed and focused on me while what he was scared of was going on.

Fear is something a service dog can't have. If he is afraid of something, and he reacts on his fear by running, barking, biting or shutting down (which are natural dog reactions to fear), he can endanger me, his disabled partner.

Changing topic randomly: Charlie and I have been "bad Catholics". I haven't been to mass in a month! I've been so tired from working that I pretty much sleep any time I'm home, so I end up sleeping until the afternoon, and mass is in the mornings. Charlie and I need more Jesus time. Will you guys please pray that we are able to go back to church? I know we both miss it and need it. Thanks! :)

It's been a long time!

How many tags can I add to one post?!

Here's my update from this month:

I've been under a "gag order" at work, so I can't update much there - except to say "stay tuned for October!"

I went on a weekend getaway with my bestest buddy, J, and our mutual friends paid for us to spend the weekend in Orange Beach, AL with our friend Mrs. Sam. (I have a Mrs. Sam friend and a completely different and unrelated Mr. Sam friend.) Charlie got to experience sand under his paws, a cafe with dogs off leash, and our mutual favorite: a few rides on Mrs. Sam's boat!

We had such a time convincing him to get his butt in the boat the first time! I don't think we would have made it if not for Mrs. Sam and her husband, as well as J and me physically getting him onboard. When the wind whipped up, and he realised staying in the shade on the towel in "down, stay" resulted in a smooth ride, where he could enjoy the salt air and watch the waves without getting wet, he was HOOKED! The next day, I asked him: "Charlie, wanna go on the boat?" and he practically flung himself down the stairs to get to the back door, where we came in from the dock the previous afternoon.

I felt so lazy and loved that weekend. Mrs. Sam and her husband made such delicious food, and we played with yarn. Mrs. Sam let us each pick which guest room we wanted to bunk in, and my bed felt like a snuggly hug on a cloud. We got a sand castle pail with yarn and other neat goodies in it! She is one of the most generous, funny and loving hostesses (and friend) a gal could wish for! We watched their horse race on TV, and she came in 2nd place. Here's hoping she'll come in 1st next time! :D

I've made 2 pairs of socks this month...well, almost. I have to put the heels in the first pair and finish off the second sock. Progress though!

I met with a bone specialist about my limited use in my hands. Come to find out, I have up to 20% usage of them. He wants me to start occupational therapy, and if we see no improvement, I'm looking at having to have surgery on them to tack the ligaments and tendons back into place where they should be and stay. Not good. Since we know it's a connective tissue disorder I have, the doctor is really not happy about the prospect of surgeries. He said I will have to go to UAB or possibly somewhere more presigious out of state to get it done by a surgeon whose whole practice is dedicated to hand surgeries, and in all liklihood, I will have to repeat the process in some years to come.

I now have a walker - I have to use it whenever Charlie and I aren't together. I feel a bit safer with it, at least indoors, because I have somewhere to park my butt when I'm feeling faint - and I also have something on both sides of me to keep me upright. When I'm with Charlie, I know he will help me or find help if I need it, and he can now be trusted to carry things for me, so he's a huge help - plus I get a lot less pity with Charlie and a cane than I do when I have my walker. Another huge perk to Charlie is I don't have to put him in the car, he gets in himself - the walker's a pain and a half to get in and out of the car, just because I end up popping all over, and people keep offering to help me do it - which weirds me out, because uhm...I don't know them, and they're helping me at my car. Makes my brain think of those old 1990's episodes of the Oprah Show where she talks about how to get away from attackers by twisting your arm just so - and if you get thrown in a trunk to kick the taillight out. And then I hear Sandra Bullock in my head from "Ms. Congeniality" go through her routine on stage on how to disable an attacker, and I think: "Can I do that, or will I hurt myself more than I hurt them?". Ugh.

Another adventure from this month makes me wonder if a study has been done on service dog handlers. My dad is disabled, and went with my mom to get a new ID this month. They took Charlie with him while I was at work, and everyone commented to dad "What a handsome dog!", and left it at that. No one tried to touch Dad or Charlie. When my mom or I have Charlie, people come up and invade our space all the time. The creepiest and most destructive is when someone brushes up like a pickpocketer and touches one of us. It's so super creepy and unsettling! I end up being really mean and saying "Don't touch!" or "Stop touching us now!" loudly. I don't understand why people don't see that's creepy! And it's rewarding Charlie, when all "on duty love" needs to come from me, his handler. My health is pretty brittle, and I need his attention and protection. He can handle my "episodes" and get my meds or help. It's scary enough to think I could have a "nervous system reboot" and be vulnerable without society reinforcing that my body and personal space doesn't belong to me. We're not a "cute dog team", we're a "working dog team". I don't know how to handle this right now. Any tips?

Lots of love xoxo
-Beth

All we can do is keep breathing

Charlie and his new flamingo toy

It's been a long month. To be honest, it's been an emotional roller coaster of a month. I find myself randomly crying, and fainting, and laughing. Charlie always makes me laugh.

I'm still hurting over my Grandma passing away, and the fact that we weren't there when she died. I know it's unreasonable and unrealistic, but it's there in my mind.

I've recently seen a neurologist and had an MRI and an MRA. (The most expensive pictures of me that have ever been taken!) I go to see him again tomorrow to hear what he sees going on with my brain. I've been really angry and sad this month regarding health. I know it comes in doses, and I will have renewed perspective and resolve possibly even tomorrow. Right now I just want to take my body off and get a respite from it.

The neurologist said he doesn't understand why no one has mentioned Marfan syndrome to me, because I have long limbs, skinny wrists and chronic pain paired with flexibility. So now yet another rare thing is possibly wrong with me. Russian roulette: EDS, Sticklers, Marfan.  

My insurance sucks. It's better than not having any, that's for dang sure, because I've been there, and that's why I lived with all this crap without seeing doctors for 5 years. Still, they want almost a thousand dollars upfront before they will run an EEG on my heart to help hunt why I keep passing out.

Yesterday I had a scare in public. I was alone, Charlie was training and I was on my lunch break at work. I went to a smoothie shop I tend to frequent when I have spare change and the shakes, because they use real fruit and veg paired with turbinado sugar. I digress. I fainted in the shop. I think if they didn't know me, I could have been robbed by a stranger, or had another ambulance called. I was super hot and flushed red. 90 degrees apparently is too hot for me to be out in now. I have these handy ammonia bars that you snap in half, and the smell reaches me even when I'm out. It's like a lifeline that guides me back through the void. It's a nasty lifeline, because it smells like cat pee, but it's a help.

My primary care physician quit on me. I have to start the hunt for a replacement now. I have an appointment on Friday to check out a new possible doc. I'm going to hit her with everything I have and see if I scare her, or if she's willing to deal with a patient that's a bit knowledgeable and frustrated with the journey.

I have had some great support this month from family and friends though! My parents have been a rock for me, and my mother in law sent me some cash support to help pay for the extra health cost. My friends Janelle, Leah, Rachel, Sam, Monica and Hollee have been amazing support too. Constantly bringing me out of my self made shell of protection made from the emotional equivalent of tissue paper and barbed wire. Thank you for being my friends. Your love is true and so much more helpful than any medication or medical help I can get. I love you!

Matthew and Stephanie, thank you for coming to our place and keeping me company. It was so nice to have a weekend away from my version of reality - to just chat and watch BBC comedy together, and to play with the pets. I love you both.

Just another manic Monday.

Charlie was so tired yesterday from playing that he fell asleep while snorgling the ball. ;)

Today's just another typical Monday. I get to go in to work at 10 on Mondays, which is immensely helpful! Usually I have to be at work at 8. It helps because I use my weekends to recover from my week at work, and I can ease back into the game of pretending to be a normal working adult.

This morning, as an example, Charlie and I woke up at 6, and stayed in bed over an hour. I have to ease my body back into alignment most mornings, making sure that all my bones are where they should be. If I stand up without checking my legs, I could stand on a dislocated hip and that hurts like the dickens! So taking it at a snail's pace feels like a luxury.

Then Charlie took my clothes to the bathroom for me, and I poured him some kibble. While he ate, I sat by the tub and rested while my bath filled up. Charlie took my dirty clothes to the washer for me, and then I gave him a bone to chew while I got in the water. I feel comfortable with him helping even if husband isn't home, because of the ER trip. I know if I get that way in the tub, he will help me.

After "helping me" (read; kissing my feet) rest while the tub drained and I drip dried, Charlie got my brush off the counter like I asked him to. This is a totally new thing for him. Usually he gets things I drop off the floor, and the concept of getting something off an object over his head is bewildering at best. After dressing, I had to feed the cats, and then take Charlie out while Zeus ate. (A mangy stray will beat him up for his kibble if no one watches out for him.) Than we ditched my cane and took two trips down the hill to take the trash out. (I use grocery bags because they weigh less and I can do it myself instead of waiting on husband. I am very twitchy about garbage sitting around.)

After the outside tasks, it's inside again to sit in the sofa chair while I wash up and make myself a breakfast. Soon we will be out the door and separated so we both can work hard for our living.

It's just another manic Monday.

This one's a bit graphic...

I've been sitting here for about 5 minutes wondering what to write.

I'm going to be completely honest today - I don't have any idea what I've shared on here this week. My brain is tired. I really REALLY want to share good things, but my brain isn't recognizing them right now.

Yesterday was so stressful. If it wasn't for my friend Rachel and my mom yesterday, I think I would have crumbled at about 2pm, and just sat and cried until I fell asleep. My car died. I've been pushing so hard lately that March seems like a distant memory. The energy boost I had from my time off is all gone and I'm in the negative spoon and PTO wise. The Apartment is a mess, there are dishes in my kitchen sink and the pile of clothes in the bedroom is enough to make me want to light a match.

After my Mom left my apartment last night, I sat down to eat and a cat fight broke out. Our outside vagrant cat, Zeus (you remember him, right? Little grey and white cat?) was being attacked by a black cat I've never seen before. I had been messing with my new piercing, because I remember when I was 13 and got the first 2 done that I should mess with it when my hands are perfectly clean, and make sure to move it about a bit so it heals completely. Well, I was messing with it, Mischief and Mayhem launch at the window and then each other, and Charlie launches into me, making the back of the earring go flying, and my ear to bleed.

Crap.

So I yell at the girls and they run two different directions. I grab my water cup and launch outside to drench the fighting cats. The black one runs off, and I check Zeus over. Apparently he was winning. I don't know why I find that surprising, since he's brought me dead mice and last week he offered me a dead squirrel. Well, by now I know I need to go take care of my ear. Guess who ate my dinner while I was outside? Charlie? Mischief? Mayhem? My money's on Charlie, that he started it and then Mayhem bullied him away and ate the rest.

Crap!

So I throw the dishes in the sink and go tend to my ear. While cleaning it, I make the grand mistake of taking it out. Husband came home and found me on the floor. It was all just way too much - the jumping up, losing dinner, losing a little blood.

I don't say this enough, but Husband came to the rescue. I'm sure he's never had to put an earring on someone - let alone through a fresh piercing while the person is faint and covered in ice packs and sipping on a cold drink - lying on the floor no less - but he did it! My ear is really sore now. I can hear my Mom and Grandad in my head "Head like that's supposed to hurt!" lol. Good news is, it's clean and I'm going to be VERY careful to not mess with it near animals! My home went from chaotic, but kinda chill to "WHOA! RAOWRRRR!!! HISS!! OWWW!!! CRASH! BOOM! HISS!!!!Bark, BARK, BARK!!!!" in 30 seconds.

Today I've been working hard to make sure we have enough people coming in to help all the patients in need. I know Summer is a crazy time for everyone, but all the blood banks suffer in the summer, and that means patients have a higher risk of not getting the help they need. When I say all blood banks suffer, I mean it. Last summer was awful. across the state, all three blood banks were on TV, Radio and internet trying to beg people to come in. Usually by the last week of the month, I'm already scheduling the week after next. (2 weeks out.) Today, I've been scheduling people for Sunday and Monday. Summer has arrived again!

I'm so grateful for Rachel sending me Starbucks! The barista yesterday said "Beth! I haven't seen you in forever! Where's Charlie?", and when I told her that I had to drop caffiene, she almost cried for me. Either that or she cried knowing that her regular isn't coming in much anymore! haha! I told her how wonderful of a job he did in the nice restaurant last week. I'm convinced if we hadn't been allowed to practice outside and then *inside* starbucks that he wouldn't have been able to make it through the meal like a Service Dog. You see - we don't have a table at home. We eat on the couch, or sometimes I eat outside on the back porch, where I have a folding chair and milk crate I use as a table. So there's no place at home for us to practice meal time manners. I think that made the barista's day, because they always want to pet Charlie, but of course can't because he's working and so are they.

That's all for now. Hopefully when I get home I'll remember to post a picture of Charlie with his new toy from my friend "H". :)

Another day another dollar and a headache to boot.

Here I am, closing up shop on another day.

I'm still covering for my supervisor while she's on vacation. Let's just say, I can bet money they're not paying her enough! Ha! Today has been frantic and fast paced, even when it normally would have slowed down. We're already gearing into summer - all the local schools have let out. That means blood and platelet donations will be down again, because everyone will be so busy with their own lives that they leave the donating to everyone else, but everyone else will do the same. So in the mean time we will do what all blood donation centers do - brain storm and pray that this summer will be different.

I'm supposed to be going home now, but I just got a call from Husband, who has been in charge of Charlie all day. The car won't start. The battery is fine, the oil is fine. That's the extent of our knowlege when it comes to cars. I'm so tired. I don't want to be a downer, but it's hard not to be a whiner and say, "When is it my turn for good stuff to happen?!"

Mom to the rescue. Again.

Tell me honestly - is this what age 28 is supposed to be like? Because I had it in my mind so differently! I had it all mapped out that I would be working, and healthy, and actually have a savings account - that I would be helping my parents. Instead, I'm perpetually ill and in need of a hand out.

A pleasant weekend

Husband's birthday is today! We celebrated on Saturday by going to see "Mom's Night Out". We were extras in the film, and you can catch the best glimpses of us (I stick out for sure) in the church scene where the preacher is preaching and the mom is told that her toddler's head is stuck in a toilet seat.

After the movie, we went to the local tattoo shop (the one my friends and I poked fun at because it sticks out like a very sore thumb) and I finally got the nerve to get my cartilage pierced! I'm really pleased with it. It looks exactly like I imagined. I hadn't eaten a thing since noon, and it was 7pm. The car was over 90 degrees and I ended up passing out inside the building. The poor owner thought he was the reason I passed out - but it's really whatever weirdness is going on with my health.

Yesterday we ate lunch with my sister in law, C. I loaded Charlie up into my other sister in law, M's car, and off we went!

We ate at a nice sushi place and Charlie did a WONDERFUL job! Exactly what I expect of him and his training. When we got there, you could see the server wasn't happy that I brought him in. She was very warm to everyone at the table, but cold and direct with me. Throughout the meal, staff came and went - including a bus boy to clean the table directly behind us. Charlie looked at all the action, but obeyed my hand signals and quiet admonishments of "Focus mommy." (to remind him to put all focus on me). He didn't beg for the food, or whine. When I told him to "go night night", he laid his head down and closed his eyes. He was too excited to really sleep, but he pretended for sure. I could see him glance up at me, and then return to closed eyes. I was so proud of him! It was our first trip into a real restaurant, and he did awesome! The server warmed up to us throughout the meal, and at the end said "He is very well behaved. Have you had him long?"
I call that success. We won over another doubter!
I think Charlie and I are a great team. I even left my cane at home! I know he can't bear weight, but husband was with us, and I knew if I fell out Charlie would do his job.

So all in all and exciting weekend! I did pass out again after we came home. I'm so sick of it. I feel drained after it. But - today's Monday, and I'm at work. I'm up an functioning, and Charlie is enjoying his new toy he earned yesterday at Mom and Dad's house.
Can you believe he weighs 100 lbs even?!

The sick day that rocked

Today I called in sick. I stayed in bed wallowing in pain, self pity and icky thoughts until 8, when I would have clocked in and been sitting as perky as I could muster in my cubicle.

I listened to my body's protest and today I refused to fake any emotion, or stifle it.

I didn't utter a word until my mom called this afternoon! Charlie knows some hand signals, and the cats were perfectly content to either sit on me, or ignore me all day. Charlie insisted I get up at 8, and he led me to the door, so I sat on the porch for 20 minutes while he did his business and visited Zeus, our homeless vagrant cat.

Then Charlie grabbed laundry, so I did a load, and then decided I wanted eggs. After cooking them, Charlie and the inside cats, mischief and mayhem, all snuggled down with me for a marathon of mind and pain numbing tv.

Now, I am snuggled in bed with them, and feeling better. I hate that I'm further in the hole for time off hours, and I hate I pushed duties onto others for a day, but I can honestly say I'm glad I did it, because I know I'll be able to face tomorrow, and I know I feel better than I would of I had kept pushing.

Sometimes it really is ok to just stop and be still, even when everything says "MOVE now!!!!"

Behold truth in action: messy hair. Messy floor. Kitty snuggles from mayhem. <3 surrounded by love like this, who wouldn't feel better and like they can face anything?

 

An awful weekend.

Hi there.

How was your weekend?

Mine sucked. Let's start with a little bit of back story:
I've been having trouble with dizzieness, nausea and fainting over the past month. I've been sent home from work several times, and have had a heart monitor on - but my heart checks out ok.

I hate Mothers' Day weekend. The radio, tv, all social media keep going on and on about it. I don't attend church on Mothers' Day because I've been sidelined by phrases like: "Happy Mothers Day to a future mom!" and "Your day will come, honey! Just pray harder!". I hate sitting in the pew, and the pastoral staff having all the 1st time mothers, then veteran mothers, then grandmothers with the most offspring all stand and be given flowers, as if it's a pagent. I hate it.
I've pretty much come to grips with the truth that I won't be a mom. It is one of my dearest wishes to be one, but it's not genetically wise, and also I have infertility - so I'm not fighting it anymore. Still, it hurts the worst on Mothers' Day. So I avoided church, and Charlie and I were at our friends A&W's townhome just chilling and watching HGTV and the Food Network all day.

It got to be about 4pm, so I left their place and we got on the highway to go home. When we got to the exit before ours, my hands were completely numb, and I just had a nausea sweep over me. I pulled over at the local Starbucks and tried to refresh myself, thinking I was just feeling faint again. When I felt a little better, and my hands were only tingly, I decided it would be smart to stop by my parents' house and cool off.

As soon as I turned into their driveway (only about a mile from the last stop), I didn't have the strength to put the car in park. I nudged it into neutral, and tried to use my cell phone to call my mom. My hands were so numb and shaky that I dropped the phone on the pavement and it broke open. I tried to get out of the car, and ended up easing onto the pavement to rest, with my feet still in the car. Charlie was clawing at the back door, knowing he is supposed to stay in his seat until told otherwise. My vision went fuzzy around the edges, so I called him to me, and he lept like Rin TinTin through the seats (giving himself a rugburn mark from the seatbelt), and landing like a cat over me, without injuring me. He started licking anything he could reach, and whining. When he came through, my foot his the horn. "Ok.", my tired brain said, "Hit it as much as you can and see if someone gets mad enough to find you."

"Charlie. Get help.", I rasped. He left me, and I could hear him clawing at the back door. My vision really did go out, and my hearing was not normal. I kept trying to hit the horn as much as I could. I was scared that Charlie wouldn't come back to me, but I knew there wasn't anything I could do about it if he didn't. Not a soul seemed to hear us. Charlie came running back to me, and nibbled my ear. My head was swimmy, but I rolled over to him, and he tugged my pants and got my foot on the ground. I put my arm through the loop on his Service Dog In Training vest, instead of holding it like a handle, and he half led, half dragged me to the front door. I know he was as scared as I was, because I could see his big eyes, and he was acting like a completely focused animal, not at all like his goofy self.

Apparently he was able to make enough commotion at the front door, and as soon as the door came open I fell into my parents' arms. The next thing I solidly remember is complaining that my arm hurt, and the nurse telling me that my vein blew in my arm and the iv wasn't working. Apparently I fought through the entire thing to stay awake, and had given myself a fit of hysterics, making the situation worse. The ER doctor wrote in my medical file that I was there for dehydration and depression. Have you ever heard of someone having trouble with fainting because of depression??? I haven't!

If it wasn't for my parents, my good friend Alberta and a bit of help from my husband, I don't know what would have happened to me. I don't remember the ambulance, and I don't really remember being at the ER for 5 hours. It seemed like maybe an hour to me, because I kept coming in and out of it.

I guess it's time to get a medical ID bracelet after all. God knows if this happens away from my family, I would be in a real spot of trouble!!!

I was so proud of Charlie. I can hardly believe a pound puppy can do such an amazing thing, to fight for his human's safety. When I came home, I was completely exhausted, but we have a picture on my dad's camera of Charlie sitting next to me, leaning in and grinning from ear to ear.


I tell Charlie all the time that the people who gave him to the pound were so stupid to give him up. He is an amazingly sweet boy, and so funny. I feel like I might still be in the driveway at my parents' house if Charlie hadn't insisted on dragging me with him. Every time I fell and hit the pavement, he would lick me, and gently tug forward, like "C'mon! Only a few more steps!" I don't know why he loves me, but I'm really REALLY thankful that we have such a bond now. I totally trust him to help me get through my day, and he still has so much more to learn before he's an official service dog.

I'm sorry I don't have pictures with this, and it's so long of an update. My doctor has seen me, and is ordering a Tilt Table test, so check for dysautonomia/POTS. Until later, I remain your Beth.

Lots of projects going on....

Just a grand ol' update here!

Work) I have a new boss - the one that was driving me into an early grave has been removed from the company. Our new boss is going to gain control of our group in 2 more months - for right now we have the blessing of our old boss, he's one of my friends that came to Charlie Majors' birthday party - A&W is his married nickname. (he's the w)
I have had a LOT of work since returning from my medical leave, because it seems two or more coworkers are always out.

Home) I don't really want to talk about home - I haven't been able to do many of the daily tasks that need doing, and it is not a welcoming environment right now. We've bought veggies and fruit, and it keeps going bad because I never have the energy to cook anymore.

Church) Charlie and I went to Mass, and he behaved very well! I only had to bribe him with 4 treats, because he started vocally complaning about the length of the service, and I wanted to keep him silent. Father Ray gave me a hug and Charlie a pat on the head, and said how glad he was that I came back, and it's nice to meet Charlie. That made me feel really good, because I'm super self concious that people are going to be distracted by us as a team in Church - and the last thing I would ever want to do is draw attention away from worship!

Charlie and the cats) Charlie is still the bottom of the totem pole at both my parents' house and our apartment. Mayhem will sometimes snuggle up against his hiney if he and we pretend we don't see her doing it. Smokey and Mischief have NO use for him, and will swipe at him if he gets too close.
Charlie's picked up some new commands! "Circle" is the most useful one to me right now. If he is facing the opposite of the way I need him to be, I can tell him to circle and he will adjust himself! The other main one we're working on is commanding him to go to specific people, and to hold things in his mouth until I'm ready for it. He still helps me get dressed every day, and that has become something I rely on him for! It's a really huge thing to not need that help from my husband anymore.

Chronic Illnesses) Still waiting on the %&*# Cardiologist. I can't be tested for Epilepsy or Post Orthostatic Tachycardia Syndrome until I see him. The Geneticist refuses to answer my calls, so I still haven't been assessed with anything official other than his observations and the "diagnosis" from the Rheumatologist. I'm still feeling very faint when I am vertical, but I'm still having to drive myself to work, because I get to work at least 5 hours after my husband most of the week. My GP took me off caffiene and I have had such a killer headache since. I'm in major withdrawal. I cheated today and got a Sweet Tea from McDonalds, and Husband FREAKED out over it. "You're gonna collapse like you did last week! That cup will kill you!"
How does he waffle from not believing me to be ill, to believing and using some form of escape from facing reality, to facing reality and being sweet about it, and then freaking out about every single thing related to the management of my conditions? That baffles me. He can pick any of those moods at any moment.

Crafting projects) I am currently knitting a shawl and another pair of socks. This month I've made 2 complete pairs of socks, and several hexipuffs for my someday "Bee Keeper's Quilt" by Stephanie Dosen. I'm feeling productive with that, so that's something nice. I can knit while I'm working, because I do phone work and my supervisor said if I can prove my productivity and professional tone is not compromised that I may continue to do so. Yay! Knitting at work. Every knitter's dream, no?
I went to Stitches South with my Mom and met some of my best online friends! They're in the Posse. I didn't have much to spend, but I did splurge and buy myself a couple of ounces of super soft blended wool and tencel fiber. I'm hoping to spin up some special single ply fingering weight yarn to make into some hexipuffs.

That's all for now, I guess! I'm sorry I don't have any pictures for you! Someone (not sure if cats or dog) ate the power cord to my iPad, so it's without any power at the moment.

Happy Easter

I've spent this weekend in a voluntary vegetative state. I slept from Friday night at 10:30pm until yesterday at 6:30pm asleep. Husband made me food, cared for the animals and then we watched a movie about Steve jobs, played by Ashton kutcher. I fell asleep again before the movie was over, and woke up an hour ago.

Charlie took great care of me, cuddling and kissing me awake so I would feed him and take my pills.

           (Charlie is the Easter bunny!)

Have a happy Easter, everyone!

I just want to be ok

I have gone back to work and my former routine. I'm in need of the break I had as a permanent change, or I need a change in my medications to deal with it all. I'm sorry I haven't posted. I haven't taken any pictures lately either.

Charlie and I went to Mass for the first time last night. I tried to sit in a spot that wouldn't be a distraction to anyone. (Apparently it was our annual Return to Confession service) He did really well. I only had to stage whisper to him twice - other than that, he followed my hand signals for standing, sitting and laying down. The young mom in front of our pew accidentally dropped her container of cheerios for her toddler, and it spilled in front of charlie. He obeyed my whisper, even though he really wanted it, and he left the "treat" alone. Then, when it was time for private confession, apparently where I was sitting was to become a confessional for the guest priest, so Charlie and I left. There were so many people there, I knew I couldn't stand in line, and so I just left. I'm the first to admit to you I'm not a great Catholic, but God is a great God. I'm hoping he can understand and forgive me for not staying.

I've just been really depressed and depleted since my return to work. As soon as I got back, I had to catch up on everything I'd missed, and cover for a co-worker who is recovering from a double mastectomy. Then, unexpectedly, our part time coworker broke her leg in two places and is out, so I'm also doing her job. I'm not doing such a great work of any of it. On top of that, MetLife is refusing my application I submitted before my leave of absence, and I'm now owing the company 40+ hours of PTO I haven't even earned yet, otherwise I wouldn't get a paycheck. So now I'm united with my Supervisor and HR rep, arguing with MetLife that I AM eligible, and DID apply in time.

My Grandma's health keeps getting worse, my sister lost her job, my other sister is on the other half of the globe and I just want to be with them. I want to go back to childhood before my health made it so hard to move, and before I was ever depressed.

I'm sorry for no updates. I am trying.

Feeling like myself again.

First, a huge thank you shout out to Mr. Swanson for sending Charlie a specially selected homemade version of a barkbox!!!

Charlie still hasn't finished the rawhide stick! That's a first!!! Usually rawhide treats last up to two hours only!!

Thank you!! 

--------------------------------------------

I had a visit from my dear friend JM yesterday, and was able to go to knit group today! I'm feeling much more like what I think of as how I should feel.

 Every day I've gotten up at whatever time my body decides. Some days it's before 7am, and others it's around 11, but then I get up gently, and go feed all the critters...Zeus outside, mischief and mayhem and then Charlie inside. I wash my face, and sit on the side of the tub to comb my hair, and then I walk with Charlie back to the bedroom to put on day clothes and make the bed. Charlie brings me everything I ask for (some days with only one request, and other days it takes quite a bit of coddling). By this time, the inside cats are done eating and eager to "help me make the bed" aka run like wild beasts under the sheets chasing out wrinkles and playfully grabbing the blanket as it settles down.

Then it's my turn to actually eat. I've been washing face, combing hair, and EATING every day of my leave (except those first two days. I slept). I'm very proud of this. Most days while working I've been washing my face, throwing on clothes and dealing with my hair in stop and go nightmare morning traffic. NOT girly or professional at all! And then I just sleep all weekend, leaving all the chores undone. No dishes or clothes washed, no bed made, nothing done.

 ...So I take my first three daily pills with Breakfast.

Then I sit until I feel better, but it's not so bad because I have Charlie who is willing to play gently or bring me the remote or iPad, and I have mayhem to use as a heating pad, and mischief to look at (she really is pretty....and a touch me not to boot! )

When I feel better, it's usually time to take Charlie out and feed him his elevensies (he eats like a hobbit! 4 or more times a day...a cup at a time) and maybe get his help loading the dryer, or taking him outside so we can both try to get vitamin d exposure (the lab results came I and I'm very very low on vitamin d. 1000 iui wasn't registering in the recent blood work, and I've been on it quite awhile.)

Then I am tired again, and give myself permission to be tired and lazy, because I have paperwork saying I have to be restful or I will not be allowed back at work, so I chill out and watch Charlie gnaw a bone, or we watch a nature documentary with lions or dogs. My stomach rumbles, and yay! It's a whole ten steps to the kitchen instead of a long walk, elevator ride, long walk and scarf it down because you have 20 minutes plus more walking to make sure you're at your desk on time.

I take as much time as I need for my throat to accept the food, and I'm not left feeling bruised and exhausted, because I took the time to eat each bite so I don't pop my jaw, like I do I while hurrying. It's time for the next round of meds, and I fight it just a bit, because I don't want to sleep while I'm alone with Charlie,because he's a baby and needs full attention.

After that, I might wipe the big counter and load my few dishes, and then rest and knit, or practice commands with Charlie, but at 3pm, I know to expect husband home, and when he does come home, Charlie bursts to full life and activity, rough housing with him and I know I can nap if I need to. 

That's just half a day. 

I love my career, and feel like I am helping to save lives. I'm looking forward to going back. I will be honest that I feel much more rested here at home, and it's refreshing to take this sabbatical. <3

Charlie has been busy!

I'm still on medical leave from work.

Charlie has been a great comfort to me. He's picked up all sorts of things he's never encountered before! A bowl, my iPad mini (it was on its side), an empty egg carton, a small Tupperware dish! He's been helping with the laundry, getting my shoes and practicing at curbs with me.

Charlie has also been busy eating cow bones, playing ball, tugging rope, catching his baby doll mid-air, and catching up on sleep and episodes of "too cute!" On netflix.

Today was a huge day hat left me physically drained, and I was really glad to have him with me. I wonder sometimes if he gets overwhelmed leading such an active life with me...or if he regrets picking me at the shelter. He doesn't seem to, but I am starting to really count on his help.

Here's a picture of my special boy!

He wanted my eggplant "Parmesan" (gluten and dairy free alternative)! No begging, buddy boy!

2 weeks...

I saw the doctor today. I've been put on two weeks leave from work, to focus on my health. I'm not gonna lie, it's a hard pill to swallow to admit that all my efforts over the past few month haven't been enough to pull me through, and they also haven't helped me take care of myself. All my efforts have backfired on me, and it's causing a faster breakdown.

sigh.

I wonder if I'll finally have the energy to make food for myself. I wonder if I'll get anything done. I wonder if I'm going to have renewed energy to try again and have better balance, or if this time off is going to reassure me that I really do need to fight tooth and nail for disability again.

I've got two weeks to figure it out.

The fight for "Control" and "Normal"

I'm paying for the long weekend excursion of the Birthday party.

It's not pretty.

For the first time ever I've given in to the pain and I'm wearing my bulky white "LOOK AT ME!!!!" cervical collar at work. Learning to honor my body's limitations is a biotch. I constantly juggle pride, pain, need and wants all in the effort to achieve "Control" and "Normal". I read an awesome article that related chronic illness and embarrassment and it sums it up in a very healthy way. (http://chroniccurve.tumblr.com/post/15070372449/embarrassment-and-chronic-illness)

I came in to work, pulled up in the parking lot and all I could remember was the fight I had with myself the first time I used my cane in the work place:

Brain: "Everyone's going to stare at you."
Beth: "They won't stare for more than a moment in shock."
Brain: "They're going to want to know what happened. If you were in an accident. They're going to be nosy and you'll have to answer them all."
Beth: "They're going to be curious and worried for me. They're not going to be nosy. I'll just have to tell them.
Brain: "You know it's not fair that you have to advocate everywhere you go. Just keep the cane in the car. You only wobble a bit, the pain is nothing. You've hidden pain before. You haven't fallen this week. You can just keep it in the car."
Beth: "Bite me. I'm going in."


When I got inside, of course I clocked in as fast as I could, used the least used hallways, ducked into bathrooms when I heard footfalls and finally arrived at my cubicle. I was able to get by without a single comment for all of 30 minutes.

People are naturally curious. It's not a sin or a shortcoming. It's a gift. It helps us check into the softer side of our nature with compassion or to analyze problems. Sometimes curiosity leads to great discoveries.

It's hard to choke back pride and the desire for self resiliance when your body is failing you though. It's hard to push on with bravado when you don't want anyone to pry. The first encounter with someone commenting on my cane was a trusted friend at work and he saw me walking from up ahead of him. "I don't like that, Ms. Beth!" he called out. I answered as cockily as I could with a wink: "Nobody asked you. I love the butterfly design." (He only meant he didn't like that my illness was affecting me so much.)

I'm constantly facing the truth that I can't really fight for "Normal" and "Control". It will burn me faster than jumping into a bonfire. I battled the choice to get a service dog for so long I've driven everyone I know to the brink of their ability to be patient with my waffling back and forth! And then it was: "Do I go with this agency? Do you think we can go without one? Can we afford a dog? Will work allow it, or will they find a way to phase out my job posistion (like what happened to a dear friend)?"

Every single day is full of choices. Sometimes I get so freaking sick of all the 50/50 of my life. Today's choice was unbearable pain in my neck, or open myself up to comments and concern but be in less pain. I chose less pain.

I'm the farthest thing from a role model, but Spoonies, PLEASE choose in favor of honoring your health - be it mental or physical. Otherwise your body/mind will beat you to a pulp. I promise the comments and concern sting less than the flames of a bonfire that will burn around you if you chase "Normal" or being in "Control".

Good morning star shine, the earth says "hello"!

We got up at 4am and took my husband to work.

It's raining like crazy, and today I discovered Charlie

Is afraid... Of umbrellas.

He had to face his fear of the weird sound of rain on

The umbrella, because he can't have fear and not try

To overcome it to help me. I'm really proud of him! It only

Took 5 minutes, and although he was uneasy the whole 

walk from the car to the front door of my Mom and Dad's,

He did it and was focused on obeying my order to stay at

"Side" (perfect 'heel' on my right hand side.)

We had a nice nap, and now he's warming my feet while I 

drink a coffee and try to get going again. Gotta be at work

In an hour and get off at 5. I'm exhausted just thinking about

The remainder of our day. At least he'll be warm and with my

Family, learning and having fun! And at least I have these 

moments of snuggle time to get me through until we can 

cuddle again.

I just feel so sore all over. I twisted something in my ankle

Last night, and it hurts like the dickens. I hate fighting

Chronic illness on the weekend. It's when I usually get to fall 

apart and not battle it. Oh well! Gotta keep fighting!

Another day another dollar.

"Momma! Wake up! It's morning and I brought you a sock!"

"I'm a good boy. I wake you up so we can play!"

"....you're not supposed to say 'good morning, baby!' and then stay in bed."

It's been a real cold few days! Nothing like up north or the Midwest, but still. Very cold. Poor Charlie has to wear one of my old night shirts when he goes outside so he doesn't shiver so hard.

We went to our friends' house and he got to meet Cletus and Ellie Mae. Cletus is a weimeriner mix and Ellie Mae is a pit bull. He had SO much fun with them, but it really made me take a second look, because in my mind Cletus was the same size as Charlie and in reality Charlie's head is twice the size, and he's an inch taller than him.

I was really disappointed that Charlie thought it was appreciate to pee on the table leg and amp speaker. So embarrassed too. He's been so well behaved indoors that it was shocking, and then that feeling was compounded with guilt because we hadn't visited with our friends for a few months and our new dog decides to unleash waves of mellow yellow. ::le sigh::

...my medication is still not being tolerated by my system. I read online if you're throwing up and having muscle spasms or twitching to call your doctor, so I did, and called the pharmacist as well. After 8 hours of throwing up, missing work, sleeping too much and back and forth with the doctor, they all decided it's psychosomatic and I must keep taking the generic. Let's unjust say I want to punch them all in the face, or make them feel how I'm feeling. To be completely honest, it takes all the starch out of me when people don't believe my truth of what I'm facing.

  I'm tired of fighting a nameless, faceless chronic illness. I'm constantly pushing myself at 100+% and can only achieve a maximum of a normal person's 56%. It's depressing. I'm tired of fighting so hard.

Today a coworker said "I don't know why you're not on disability. You should take that government money and stay home or travel!"

I have no energy to explain or confront. I wish I could hibernate for a little while.

My family has been really supportive, for which I can only thank them. 

I'm just feeling adrift. I'm glad I have Charlie and my kitties. They bring pure joy, and don't judge me for my illnesses or choices - something I wish I could cut myself slack for, but never seem to be able to do.

So sick of professional idiots.

My insurance, doctor and pharmacist are set out to kill me if they can.

They decided to give me a generic instead of my normal prescription, and refused to give me the real drug without an order from my doctor. He wrote the general order form for it because there was no generic on the market, which resulted in me getting a generic by surprise last night when I went to get my refill.

The pharmacist argued with me that she was trying to save me money, and basically bullied me verbally, like I was stupid for trying to demand my brand name pill which costs almost $40 a month versus $4. It's a complete waste of breath arguing with her, because she's able bodied and doesn't care or understand what it's like. I've battled so long to get a drug that works, only to have this happen. You see, I ALWAYS get sick off generics. Currently I have some kind of congestion pounding away at my face like a thousand mini jackhammers, and so I said "screw it! Give me the damned things. I just want to go home!"

Well, I took it this morning and what do you know? I barfed up my innards like no tomorrow. Twice.

I called the pharmacy to see what fillers and inactive ingredients are in it because I can't have gluten or dairy, and she didn't effing call me back! So now I get to spend my whole weekend trying to keep down a pill I need to function as a human being. Basically my only off days are ruined and she doesn't know or care. I have to wait until Monday, try to get ahold of her and the doctor too. I want to slap the pharmacist for arguing with me. I don't care that she went to college and thinks she knows what the frak she's talking about. I want to slap her for her disbelief ruining my only off days in the past two weeks on a weekend no less!

Not to freak anyone out, but it's possible to have a seizure if you just up and stop taking this pill.

I don't have the energy for this bullshit.

It's like when my insurance tried to strong arm me into having my pills delivered. They sent letters, cards and constant phone calls, even after I verbally rejected them. "It will save you time and money, as well as stress. No more keeping track of when your refill is due! Straight to your door! Cheap!!"

It's not cheap if I have the generics delivered and have no way to correct it. It's not cheap to have to take off work to make it to the post office in time because they WON'T deliver it to my door, as I live in a small flat and our mailbox is the size of a flea wearing spanx, so I have to go pick it up at the post office in town when they're open. Oh, and unlike the pharmacy, the post office is in a historic building with marble steps which are impossible to climb, and no motorized cart to sit in and wheel over to the pick up window.

It's like when phlebotomist say "you need to be a big girl. I got this with a regular needle. I know what I'm doing!" In response to "my veins are tiny, they roll and collapse easily. Please use a butterfly needle."

I'm just tired of professionals thinking they know better than me and that they can argue me into submission, when I'm the one stuck with this body 24/7 365 days of the year! I believe I know more about my body than you, buckaroo!!!!