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

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".

I've been married for 8 years...

And I still don't quite know how that happened!

I was listening to the radio show "The Bert Show" on my way in to work this morning, and they were doing a segment about healthy, long running relationships. They were asking people to call in and in one sentence explain how they have stayed together so long. They gave examples like: "Raising the kids together has really cemented our bond", "Trusting each other", "Not fighting over money", "Sharing our faith with each other", "Doing athletic things together".

It struck me that Husband and I aren't bound by those things. I can't have kids, and he chose to marry me knowing that. I have trust issues, and he loves me anyway. We do fight over money, because we've lost our house to forclosure and now if we don't have the willingness to be more stubborn than each other, we end up spending more than we earn. (I am openly admitting he's talked me off the ledge of some insane purchases in the past!) We don't share the same faith either. I'm now a Catholic, and he is a Protestant. He plays baseball when the boys are interested, but we had to sell our matching bikes because I can't ride anymore.

I think what binds us together through all this mess is that we both stood before God and everyone we knew and promised we would stick it out and become "one flesh". That through everything we would always choose each other. There are times when I wouldn't choose him, or he wouldn't choose me except for that promise. There are times where we both wholeheartedly choose each other and we would make any onlooker sick to their stomach by how gushy we can be. Most of the time we're like a very comfortable pair of friends. I think if we ever stop investing in our friendship it would be very easy to say "I give up on that promise".

Husband has had some huge curveballs thrown his way lately. There has been a lot of increased pressure on our union. But I know who he's coming home to at night. I know he's going to help me feed the animals, and I'll gripe at him to kick his shoes off because "carpets catch all kinds of bacteria!!", and he'll roll his eyes, but kick them off anyway. I know that he'll ask "What's for dinner?" but now he'll try to learn how to help me make it. I know that we'll sit on the couch with Charlie at our feet and a cat on the back of the sofa behind each of us, and we'll watch a show Husband picks out while we eat what we made. I know with certainty that even if I'm too tired to clean the dishes, he won't gripe about it, and when it's time to go to bed we'll play fight over who has to turn off the lamp.


I think that's something that can't be summed up into one sentence.

Merry Christmas!

I got a new shirt from my husband! Now I know how BBC's Sherlock survived the Reichenbach fall...

He hopped in the Tardis with Doctor #11!

In other news, I saw the geneticist Christmas Eve morning. I'm really emotionally spent today. I can't really write about it at this moment, but let's just say it was a very weird experience to have a doctor spend hours with me and validate my pain and past.

I was diagnosed with Ehlers danlos syndrome by my rheumatologist, but my geneticist thinks I might have either hypermobile type or vascular type, or a complete other condition called "sticklers", which I haven't looked up yet. (I do have some info on it from him, but I was so tired after the visit and then I had to work and serve at Mass so I haven't read it yet.)

I need prayer from you, dear anonymous reader... So I can be tested because my insurance provider doesn't usually cover genetic testing for these conditions. Each test will run approximately 10 to 20 thousand dollars to run. But, if I have vascular type ehlers any of my organs could just decide to come apart without warning signs.... And if it's sticklers, I could have retina detachment and possibly end up blind. Obviously I'm praying selfishly to be spared those two outcomes and just have the lesser of three crosses to bear; hyper mobility type ehlers. In all things I'm reminded of our savior on the cross and of the little flower of Jesus, our dear Saint Therese... May all my sorrows, fears and all my pain be united to the Cross and let me bear pain so others may be spared or see the way to Christ. Amen and amen.

Tonight my Priest related a story of an excited 3yr old who led her uncle to the living room to gaze at a fine china Nativity set. She was asked by her uncle if she knew what it was, and she excitedly said "yes!!!!! It's breakable!"

    The fragility of the baby Jesus, who came to be completely broken for everyone...to be broken for me....it's very heavy on me tonight. I'm so accustomed to thinking of myself as fragile or broken, and I'm glad to be reminded by my Priest tonight to unite my brokenness to Jesus', and my sorrow over my barrenness to the sorrows of our Mother's heart. I am spared through my medical conditions ever having to lose a child, while she has sorrowed to see her child born to die for all of mankind. I can only marvel and pray and cry thinking about it all.

Merry Christmas, dear ones.