I am a full body RSDer. Since my divorce and the adoption of Kiva in 2007, we have shared a small-ish, 2 bedroom, rental house with an average sized front yard and a back yard that has twice the square footage of our house. If it weren't for the assistance of Boulder County Housing Authority, we'd probably be living in my parents basement ... um ... not an option for this single, independent woman of a mature-ish age. My folks do help out quite a bit with occasional trips to the grocery store, hardware and garden store, pharmacies, gas for the Brown Bomber, food delivery when I can't move, just to name a few, and my brother, Houdini, offers me tremendous help with the stuff that's too heavy for me to manage, but for the most part I operate according to my 3 year old nephew's sense of logic ... "I do it myself!!" Which is why all of the projects that I take on take forever to me complete!! But ... most of them get completed eventually!!
From the day I signed the lease, I was told that I am the one responsible for all yard up-keep, but when I took possession, the entire front yard was comprised of weeds, bare spots, grassy spots, and squirrel holes. (The mowing of the front is done weekly by my Good Neighbors, God Bless 'Em!! I just have to water it!!) The back yard was a barren waste land where even earwigs went to die. Hardened Colorado clay, tall weeds, viney weeds, holes in the fence, a wibbly-wobbly cinder block patio the size of a jail cell (not that I know from personal experience, but I do watch crime movies), a sloping sidewalk that pulls all water away from the yard, 2 gates that have to be manhandled to get open and closed ... and for 5 years, I let it go, looked passed the ugliness, and just dealt with it. I couldn't afford to do anything else other than let it go. Last summer was the 1st time I tried to budget and do something to tame the wilderness by testing my abilities to tend a small vegetable garden. The deal that I made with myself was that if I could manage to gain a harvest from the few plants that I had going, I would graduate to a larger garden this year. Well I got a decent harvest last year, so I started making plans for this year's gardening attempts!! I had approached the Property Manager about splitting the costs and the labor to get the back yard tilled and seeded for grass, as well as seeding the front yard. I was told, "no." Enter Dad, stage left, to go to bat for me once again. He got her to acquiesce to a 50/50 cost/labor agreement. I was to call her at the beginning of May 2013 so we could schedule a time to proceed with the work before summer hit. It snowed on May 1st so I called her as soon as it melted (May 3rd) ... and left a message regarding the yard and the fact that I needed a new screen door. 2 days later, the Maintenance Guy showed up and gave me a new door, but knew nothing about the work to be done in the back. 2 weeks later, before my Mom and I went to Kansas to see my sister and the Munchkins, I called again ... and left another message. I called again on June 3rd and guess what?!?!?!?! Yep, I left another message. I began scraping a large swatch of clay and weeds to make room for the pallet veggie garden that I had planned. Houdini came over and tilled the area for me with a shovel and helped me place the 4 pallets. I filled them all with soil, sheep-n-peat, and plants. I was following thru with my commitment to the 50/50 agreement. This last Monday, June 17th, I called the Property Manager again. 1 more message finally warranted a return call and I was informed that the property owners had been moved to elderly assisted living and their son says that there's no money for frivolity ... a yard and a patio re-lay = a frivolous expense.
For over a year I have been promising Kiva and myself that we would have a yard to play in by the 4th of July, 2013. We can't afford to go on any trips or vacations, so having a comfortable and aesthetically pleasing yard in which we can retreat from our stagnant life has become paramount. And now it falls solely on my pain riddled shoulders. I have cancelled all plans with my Fun Folk (even though it kills me to be apart from their love and friendship), I am rerouting all of my available pennies (literally) to make my backyard as comfortable as possible, every single solitary spoon is being spent on doing all of the manual labor by myself, and the date of completion has been pushed back to July 14.
Being the independent woman that I am, I have a serious problem with asking for help. I can't plan on when I'll have the spoons to do any work, so when the mood hits, I don the gardening gloves, cargo shorts, bikini top, tennis shoes, and I get busy until I just can't function anymore. Don't yell at me for being this way. I have had 44 years to perfect this particular level of independence and getting bashed for it only pisses me off and makes me more determined to "do it myself." Over the years, my Mom, my Dad and my brother have learned how to play my "help" game. They no longer offer to help me. They stay in touch with me via texts during the daytime hours and when they know that I'm working outside, and if they have some time to spare, they just show up with their work gloves on and ask me what I need done next. This is my FAMILY that we're talking about here. The ones that I do ask for help when I'm absolutely desperate. If they haven't been able to change my independent ways, there's no way in hell that anyone else can make me change them!!
I am frustrated, discouraged, angry, disappointed, and determined. Not a great combo for someone who struggles with intense chronic pain. Last night I made the conscious decision to change my crappy attitude and focus on my determination and the final product. This morning I woke up with the dry heaves and even more determination than I had last night. I have faith that as soon as my nausea pills kick in, I'll be back out there, sweating, slaving, scraping, raking, pulling, and repeating. I have some orange plastic fencing to put around the newly seeded area (when I get it seeded) and I have more pallets being donated so that I can forego a bit of seeding and put in a little sun deck of my own design. I have faith that Kiva and I will have a haven in which we chillax and recover for the rest of the summer. I have faith that I will ignore the chastising words spewed by others and focus on my endgame!! I have faith that if/when help shows up, it will be utilized and appreciated ... but I also have faith that it will not be asked for. Yes, I'm a masochistic martyr!! To know me is to like me. To understand why I do what I do when I do it is to love me. Screw you, Property Manager!! "I do it myself!!"
Raising Awareness for RSD (and Ziggi's)
The Power of Orange
Wednesday, June 19, 2013
Thursday, June 13, 2013
Not-So-Total Recall
It needs to be said again ... I hate RSD!! One of the most difficult side effects that I deal with is loss of memory. Whether it's a moment in time or just one word, my level of recall is for shit!! Ok, maybe it's not really quite that bad, but it definitely puts a big dent in my self-confidence. From what my doctor has explained to me and what I've learned through reading medical journals regarding nerves and synapses in the brain, there are misfires between synapses that cause the gaps in memory (just like the misfires that cause my affected body parts to twitch and shake). It's kinda like a car when one of the battery cables is just a little bit loose. If you turn the ignition (try to remember something) you may or may not get a connection (the actual memory of the moment). Sometimes the engine turns over (remembering that entire moment in time) but then you hit a tiny bump and the connection is lost and the car dies (forgetting one important, descriptive word to tie the memory together). And just like when you're sitting in that dead car on the side of the road, you feel like an idiot and you are absolutely positive that everyone passing by is staring at you and thinking the same damn thing. That feeling of embarrassment and shame is borderline brutal.
I have found a few ways to help tighten the connections in my brain through little kindergarten memory games, increasing my vocabulary, reading main words in a thesaurus and seeing how many synonyms I can come up with on my own ... things like that. That way when I forget a word, I can maneuver my way thru similar words until I get to the particular word for which I was originally searching. Confusing, no?? (Welcome to my world!!) But ... I can usually jumpstart those connections on my own and in a pretty timely fashion too!! Idiot status avoided!!
The words that I can't jumpstart are proper names, and herein lies my reason for blogging today. I was blessed with the opportunity to meet the Sweet Ones for lunch yesterday. Even though they only live about 30 minutes away from me, this is only the 2nd time we've been able to get together in the last few years due to all of our health issues and disdain for the winter cold. But these 2 wonderful people have become like family to me. As any conversation that involves my participation goes, we hit on some seriously random topics. We talked about our current health problems and solutions, their sons and granddaughters, stand-offs, our dogs, the Munchkins, rafting, the fires burning in CO, stuff they did growing up in Humbolt County, pharmacies, our food, and eastern countries. See? Random.
In regards to our discussion of eastern countries, we talked about Russia and then branched off into surrounding countries and the small towns and the people and the terrain. Here's the deal, I have never been to any of the countries that we discussed, but I have another good friend who has ... often!! And he sends me pictures of the people he meets, the places he goes on his "walk-a-bouts," the wild animals he encounters, the humble beauty of the small, but tight knit, communities. I really do live vicariously through his photographs and his destinations become engraved in my memory. But yesterday I couldn't do it. I couldn't remember the name of the country that he has shared the most with me. I could envision every single picture he's ever sent to me ... small cottages with short stone walls for fences, a farmer with a horse-drawn cart toting a massive mound of hay, very old headstones that bear depictions of how the individual died, a hobbit path, a dark wolf sitting vigil over his camera bag, gargoyle rain spouts ... I could picture them perfectly and in vivid color ... but there was no way in hell I could remember where they were taken. For 20 minutes I tried and tried but I couldn't make the connection. That loss of control started a mild sense of panic and I had to get it under control. I was a 20 minute drive from home, not to mention the fact that I was in public. It really bothered me that I was starting to have "an episode" in front of my dear friends. So I swallowed my pride and sent a text to my other friend claiming a "brainfart" on the name of the country. I had told the Sweet Ones, "I think it begins with an "S" and it used to be a part of the USSR." Mr Sweet One started rattling off names of eastern countries and cities and none of them jumpstarted my memory. For 30 minutes my heart slowly made it's way into my throat until my phone chimed with a return text. "Romania." I wanted to pull a Dobbie and repeatedly bash my head into the nearest wall as punishment for my stupidity. And then I wanted to headbutt the table for admitting a weakness that I had no intention of admitting, ever, to my other friend. I felt defeated.
Memory loss is just one of the many side effects of RSD that I am forced to deal with on a daily basis. It's not a brain fog because there is some amount of clarity with the memory recall. There is also a physical zap that happens in my head, just like when it happens with the twitches and hippy-hippy-shakes in the rest of my body. Not necessarily a 'pain,' but definitely a discomfort that is immediately followed by the feeling of complete idiocy.
It's tough to have faith in these circumstances. I know it won't get any better, in fact it'll probably get worse. There's nothing I can do about the shame and annoyance that I feel when it happens, and I haven't found any tricks yet for recalling proper names ... but I'm open to suggestions!! I do, however, have total faith that I will make light of these situations when they do happen. There is no need for anyone else to see or feel the anxiety that memory loss causes me, right?? Vanity, thy name is 'woman'!! Or in my case, 'Jenn' ... Hopefully soon I will be able to turn this whole incident around and make a joke out of it ... the sooner the better because this embarrassment is brutal!!
I have found a few ways to help tighten the connections in my brain through little kindergarten memory games, increasing my vocabulary, reading main words in a thesaurus and seeing how many synonyms I can come up with on my own ... things like that. That way when I forget a word, I can maneuver my way thru similar words until I get to the particular word for which I was originally searching. Confusing, no?? (Welcome to my world!!) But ... I can usually jumpstart those connections on my own and in a pretty timely fashion too!! Idiot status avoided!!
The words that I can't jumpstart are proper names, and herein lies my reason for blogging today. I was blessed with the opportunity to meet the Sweet Ones for lunch yesterday. Even though they only live about 30 minutes away from me, this is only the 2nd time we've been able to get together in the last few years due to all of our health issues and disdain for the winter cold. But these 2 wonderful people have become like family to me. As any conversation that involves my participation goes, we hit on some seriously random topics. We talked about our current health problems and solutions, their sons and granddaughters, stand-offs, our dogs, the Munchkins, rafting, the fires burning in CO, stuff they did growing up in Humbolt County, pharmacies, our food, and eastern countries. See? Random.
In regards to our discussion of eastern countries, we talked about Russia and then branched off into surrounding countries and the small towns and the people and the terrain. Here's the deal, I have never been to any of the countries that we discussed, but I have another good friend who has ... often!! And he sends me pictures of the people he meets, the places he goes on his "walk-a-bouts," the wild animals he encounters, the humble beauty of the small, but tight knit, communities. I really do live vicariously through his photographs and his destinations become engraved in my memory. But yesterday I couldn't do it. I couldn't remember the name of the country that he has shared the most with me. I could envision every single picture he's ever sent to me ... small cottages with short stone walls for fences, a farmer with a horse-drawn cart toting a massive mound of hay, very old headstones that bear depictions of how the individual died, a hobbit path, a dark wolf sitting vigil over his camera bag, gargoyle rain spouts ... I could picture them perfectly and in vivid color ... but there was no way in hell I could remember where they were taken. For 20 minutes I tried and tried but I couldn't make the connection. That loss of control started a mild sense of panic and I had to get it under control. I was a 20 minute drive from home, not to mention the fact that I was in public. It really bothered me that I was starting to have "an episode" in front of my dear friends. So I swallowed my pride and sent a text to my other friend claiming a "brainfart" on the name of the country. I had told the Sweet Ones, "I think it begins with an "S" and it used to be a part of the USSR." Mr Sweet One started rattling off names of eastern countries and cities and none of them jumpstarted my memory. For 30 minutes my heart slowly made it's way into my throat until my phone chimed with a return text. "Romania." I wanted to pull a Dobbie and repeatedly bash my head into the nearest wall as punishment for my stupidity. And then I wanted to headbutt the table for admitting a weakness that I had no intention of admitting, ever, to my other friend. I felt defeated.
Memory loss is just one of the many side effects of RSD that I am forced to deal with on a daily basis. It's not a brain fog because there is some amount of clarity with the memory recall. There is also a physical zap that happens in my head, just like when it happens with the twitches and hippy-hippy-shakes in the rest of my body. Not necessarily a 'pain,' but definitely a discomfort that is immediately followed by the feeling of complete idiocy.
It's tough to have faith in these circumstances. I know it won't get any better, in fact it'll probably get worse. There's nothing I can do about the shame and annoyance that I feel when it happens, and I haven't found any tricks yet for recalling proper names ... but I'm open to suggestions!! I do, however, have total faith that I will make light of these situations when they do happen. There is no need for anyone else to see or feel the anxiety that memory loss causes me, right?? Vanity, thy name is 'woman'!! Or in my case, 'Jenn' ... Hopefully soon I will be able to turn this whole incident around and make a joke out of it ... the sooner the better because this embarrassment is brutal!!
Monday, June 10, 2013
A Pet's Peeve
Hi ho!! Kiva the Dog here, reporting live from the Chalet. My Mommie finally took me for a walk this morning!! I was so excited that I peed on the sidewalk!! To be honest, I have already forgotten all of my leash training from last summer ... and the summer before that ... and the summer before that ... and the....well, you get the picture. In my defense, it's not my fault!! My Mommie is not confident that her body will hold up every day, especially in the winter, and there's no one for us to walk with regularly to give Mommie that assurance that if something does happen to her, there is someone there to help ... besides me, that is!! So once she's got her Spring Treatments in her and she's rebuilt some stamina, we start walking again.
We usually start out on short 2-3 block walks and then we gradually increase a block every day, but we were on a roll with our leash re-training and Mommie had enough spoons in her arsenal to donate two more to me, so we extended today's walk to about 6 blocks. I'd pull, Mommie would give a quick tug on my leash, I'd hack, I'd wheeze, we'd go on. I'd pull again, Mommie would tug the leash again, I'd hack and wheeze again, and Mommie would instruct me to, "Sit." I'd catch my breath, Mommie would say, "Let's go," I'd pull again, Mommie would make me stop again ... over and over and over ... for 4 blocks!! Finally I remembered that it was my pulling that was making me wheeze and hack so I gave Mommie some slack on my leash and the last 2 blocks were easy peezy!!! Until we got to juuuust in front of the Good Neighbor's house ... and there she was.
Mommie has been parking the Brown Bomber on the street lately because our single car garage is filled with assorted groups of buckets of gardening tools, pallets, potting soil, some stuff called Sheep-N-Peat that just smells like poop, a roll of some kind of black fabric, a wheelbarrow, and rakes and shovels and stuff. As we walked passed the Good Neighbor's house, Mommie glanced up and through her car windows she could see the form of Psycho-Crazy Lady from up the street, my neighborhood arch nemesis (2nd only to the mailman). I felt Mommie's demeanor change as she shortened my leash and drew me back to her right side. Smart Mommie started to cut through the Good Neighbor's yard so that I would see my house and pull her to the door, but Psycho-Crazy Lady popped out from in front the Brown Bomber and in the high pitched voice of a 4 year old that can't pronounce her L's and R's squealed, "Wew hewwo thewe!!" Now Mommie has talked to this woman before and that is not her normal tone!! Knowing just how much Mommie hates baby talk, my peaceful Beagle-ness skedaddled and I went full blown German Shepherd Nazi on her ass!! "Oh what's wong wiff da wittle puppy? You'we a good dwoggie, come here good dwoggie," she chirped as she patted her thigh with the hand that wasn't holding the cane. I could contain myself no longer and I lunged, barking rabidly (I'm pretty sure I could be heard for a 2 mile radius.). Mommie jerked my leash and reeled me back in but I wouldn't stop growling and snarling and barking at this woman whose mere presence causes my Mommie extra pain. (Yep, she's one of those types of human.) "Come hewe sweet dwoggie, I just want to pwet you." <Mommie's note: Are you friggin kidding me lady?? Knock it the hell off already, you've known for years that she hates you!!> Mommie cut across our yard, pulling me backwards towards the door. She fumbled her to-go cup of coffee while trying to pick our house key off of her shiny silver key chain, and cussed. I was still trying to charge the Psycho-Crazy Broad who was still talking to me in baby talk from next to Brown Bomber, still 2 octaves above middle C. Mommie stopped messing with her keys, turned around and smiled at her. Smiled!! You could have knocked me over with a feather!! Aaaaand then she opened her mouth and spoke. "We're in a mood today. It's probably best to not antagonize either of us." Mommie found our house key and turned to open the lock when she heard Psycho-Crazy Broad say, in her normal tenor-ish, exasperated voice, "Well fine!! I just wanted to say 'hi' to your dog." Mommie turned the knob on our door and shooed me inside, turned back around and said to the woman, "Unlike you, I tend to avoid animals that act like they want to rip my head off, not egg them on. You are really lucky that I'm a firm believer in leashes, because I'm not fast enough to stop her. Please, don't ever do that again," and Mommie came inside where I greeted her with a hug and a kiss and a motorboat propeller of a tail wag!! I was proud of her for saying "please."
Psycho-Crazy Broad waddled away mumbling under her breath and Mommie bee-lined for the bathroom and her 4% k-spray before she headed over to Flo for a refill. I guess all of the tugging and pulling and lunging caused her some extra pain ... dumb psycho lady made me hurt my Mommie's RSD!!! Don't think for one "wittle" second that I'll forget this!!! But Mommie bounced back in time to go plant shopping with her Mommie!! Like she's said time and again, "It's all in the distraction!"
I have faith that I will protect my Mommie from that evil presence up the street. I have faith that Mommie will continue to take me for walks and I have faith that I will save up my poop for Psycho-Crazy Broad's front yard for the rest of the week ... at least!! Don't mess with my Mommie, don't mess with her nerves, and please, for the love of everything Holy, don't use baby talk in front of us!! I don't enjoy causing my Mommie extra pain, but I will if I think I'm protecting her. Nobody messes with my Mommie, nobody!!!! ... except me, of course!! AAARRRROOOOOOOOOOOOOOO
We usually start out on short 2-3 block walks and then we gradually increase a block every day, but we were on a roll with our leash re-training and Mommie had enough spoons in her arsenal to donate two more to me, so we extended today's walk to about 6 blocks. I'd pull, Mommie would give a quick tug on my leash, I'd hack, I'd wheeze, we'd go on. I'd pull again, Mommie would tug the leash again, I'd hack and wheeze again, and Mommie would instruct me to, "Sit." I'd catch my breath, Mommie would say, "Let's go," I'd pull again, Mommie would make me stop again ... over and over and over ... for 4 blocks!! Finally I remembered that it was my pulling that was making me wheeze and hack so I gave Mommie some slack on my leash and the last 2 blocks were easy peezy!!! Until we got to juuuust in front of the Good Neighbor's house ... and there she was.
Mommie has been parking the Brown Bomber on the street lately because our single car garage is filled with assorted groups of buckets of gardening tools, pallets, potting soil, some stuff called Sheep-N-Peat that just smells like poop, a roll of some kind of black fabric, a wheelbarrow, and rakes and shovels and stuff. As we walked passed the Good Neighbor's house, Mommie glanced up and through her car windows she could see the form of Psycho-Crazy Lady from up the street, my neighborhood arch nemesis (2nd only to the mailman). I felt Mommie's demeanor change as she shortened my leash and drew me back to her right side. Smart Mommie started to cut through the Good Neighbor's yard so that I would see my house and pull her to the door, but Psycho-Crazy Lady popped out from in front the Brown Bomber and in the high pitched voice of a 4 year old that can't pronounce her L's and R's squealed, "Wew hewwo thewe!!" Now Mommie has talked to this woman before and that is not her normal tone!! Knowing just how much Mommie hates baby talk, my peaceful Beagle-ness skedaddled and I went full blown German Shepherd Nazi on her ass!! "Oh what's wong wiff da wittle puppy? You'we a good dwoggie, come here good dwoggie," she chirped as she patted her thigh with the hand that wasn't holding the cane. I could contain myself no longer and I lunged, barking rabidly (I'm pretty sure I could be heard for a 2 mile radius.). Mommie jerked my leash and reeled me back in but I wouldn't stop growling and snarling and barking at this woman whose mere presence causes my Mommie extra pain. (Yep, she's one of those types of human.) "Come hewe sweet dwoggie, I just want to pwet you." <Mommie's note: Are you friggin kidding me lady?? Knock it the hell off already, you've known for years that she hates you!!> Mommie cut across our yard, pulling me backwards towards the door. She fumbled her to-go cup of coffee while trying to pick our house key off of her shiny silver key chain, and cussed. I was still trying to charge the Psycho-Crazy Broad who was still talking to me in baby talk from next to Brown Bomber, still 2 octaves above middle C. Mommie stopped messing with her keys, turned around and smiled at her. Smiled!! You could have knocked me over with a feather!! Aaaaand then she opened her mouth and spoke. "We're in a mood today. It's probably best to not antagonize either of us." Mommie found our house key and turned to open the lock when she heard Psycho-Crazy Broad say, in her normal tenor-ish, exasperated voice, "Well fine!! I just wanted to say 'hi' to your dog." Mommie turned the knob on our door and shooed me inside, turned back around and said to the woman, "Unlike you, I tend to avoid animals that act like they want to rip my head off, not egg them on. You are really lucky that I'm a firm believer in leashes, because I'm not fast enough to stop her. Please, don't ever do that again," and Mommie came inside where I greeted her with a hug and a kiss and a motorboat propeller of a tail wag!! I was proud of her for saying "please."
Psycho-Crazy Broad waddled away mumbling under her breath and Mommie bee-lined for the bathroom and her 4% k-spray before she headed over to Flo for a refill. I guess all of the tugging and pulling and lunging caused her some extra pain ... dumb psycho lady made me hurt my Mommie's RSD!!! Don't think for one "wittle" second that I'll forget this!!! But Mommie bounced back in time to go plant shopping with her Mommie!! Like she's said time and again, "It's all in the distraction!"
I have faith that I will protect my Mommie from that evil presence up the street. I have faith that Mommie will continue to take me for walks and I have faith that I will save up my poop for Psycho-Crazy Broad's front yard for the rest of the week ... at least!! Don't mess with my Mommie, don't mess with her nerves, and please, for the love of everything Holy, don't use baby talk in front of us!! I don't enjoy causing my Mommie extra pain, but I will if I think I'm protecting her. Nobody messes with my Mommie, nobody!!!! ... except me, of course!! AAARRRROOOOOOOOOOOOOOO
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