I rummaged through old pictures today and found one of my Complication and me that was taken when we first started this whole dating thang. There we are in our riding leathers and winter gear stopped in at his old employers Christmas party, he's flipping off the camera and I'm just giggling and " intimidating" hims. That was about three and a half years ago. A lot has happened that has impacted our lives and how we lived them. He got laid off, I got sick, he got rehired, I was still sick, I got stronger, he got laid off, I got hit by a car. And here we are. We can't just pick up and go anymore, and I love that he doesn't blame me for my illnesses. I know he understands how heart breaking it is for me that my helmet is dusty, and the bike hasn't really moved since I haven't been able to be on it. Our adventures in life may have been derailed, but now we get to explore who WE are in a better sense. Our relationship has had more strength and foundation than my marriage did. My Complication has stood by me and for me during the "for worse" and all I can hope for is that our " for better" will come so we can go back to being us. He understands why this being still is hard on my gypsy soul and I have no idea where his deep well of patience has come from, all I can do is be thankful for it. He probably doesn't understand how much I love and appreciate this side to him or how he deals with caged gypsy me, I know it's not easy. I finally found what I've been hunting for though, and it sounds beyond trite BUT I found the one who can be strong for me when I can't be, loves me for me not who he would want me to be, knows my scars and paints me beautiful anyway
I can't wait until we can go for a scoot again, not necessarily headed for anywhere specific- just to go, and be, and who knows what adventure is hidden along that stretch of highway.
Saturday, July 7, 2012
Friday, July 6, 2012
Grieving and minions
Sometimes life is harder than I want it to be. Like it's been said " life happens when we make other plans" I was visited by a really good friend last night, and we laughed and giggled until 3am like little girls at a sleepover. She helped forget for a little while that I'm not the me I was when I met her 2 1/2 years ago. She doesn't treat me any differently and I know it's because she feels lucky that I'm still here. She's the one who took the pictures of my truck the next day after my accident. She was the main one to take me to appointments and help me get back to being even this shadow of me, and never gives me " that look". Anyone with a chronic illness knows the look I'm talking about. She's the main reason I can find my happy spot for a single moment and take this new version of my life in babysteps. Thank you my dearest Henchwoman! I wouldn't be able to do this without you. Thank you for being my friend through good and bad.
So she came, and visited, and sympathized over a sick pet of mine.
LTD was set up in a sick tank to the left of my computer monitor so i could keep an eye on him while doing my daily social duties. He had a seizure about 7 days ago and could no longer manage in the big tank without our worrying about his being drowned. So into a smaller tank he went with enough water to cover his shell, but not enough to drown in and he seemed to be doing better, struggling along daily with only his right sided legs truly working and he reminded me that no matter what the struggle, we must still fight to get there- where ever "there" was. I tried not to get my hopes up about the chances of him surviving but they were, as we came further from the day the seizures started, the fact that he ate made me hope. LTD passed on today while I was sleeping that FIBRO sleep of no return ( the almost coma like sleep that happens when we've over done) And I woke up, walked out of the bedroom, the first thing I saw was the dark empty tank. I'm sad, I'm upset, and I'm at a loss. Is that how it's going to be? This struggle of mine? Fight daily, then just don't wake up. I know it's wrong to compare my struggle to a turtle's but there it is. Maybe he was my mascot in the illness wars, and maybe I'm giving him too much credit and heart. He may have "just" been a red eared slider, but he was charming, funny and very interactive. He liked his humans. And we adored him. So I'm grieving, and I don't understand if it's because I lost my shelled friend, or grieving the symbol he became for me.
So she came, and visited, and sympathized over a sick pet of mine.
LTD was set up in a sick tank to the left of my computer monitor so i could keep an eye on him while doing my daily social duties. He had a seizure about 7 days ago and could no longer manage in the big tank without our worrying about his being drowned. So into a smaller tank he went with enough water to cover his shell, but not enough to drown in and he seemed to be doing better, struggling along daily with only his right sided legs truly working and he reminded me that no matter what the struggle, we must still fight to get there- where ever "there" was. I tried not to get my hopes up about the chances of him surviving but they were, as we came further from the day the seizures started, the fact that he ate made me hope. LTD passed on today while I was sleeping that FIBRO sleep of no return ( the almost coma like sleep that happens when we've over done) And I woke up, walked out of the bedroom, the first thing I saw was the dark empty tank. I'm sad, I'm upset, and I'm at a loss. Is that how it's going to be? This struggle of mine? Fight daily, then just don't wake up. I know it's wrong to compare my struggle to a turtle's but there it is. Maybe he was my mascot in the illness wars, and maybe I'm giving him too much credit and heart. He may have "just" been a red eared slider, but he was charming, funny and very interactive. He liked his humans. And we adored him. So I'm grieving, and I don't understand if it's because I lost my shelled friend, or grieving the symbol he became for me.
Monday, July 2, 2012
*knock knock knock* Anybody there......
Oh wait- this is simply a computer screen with a robot at the keyboard.
The last couple days have been trying. Emotionally draining. It's hard when you lose a friend because of their own behavior, even harder when they revert to high school behavior and have their friends make sure to let you know why you're trash.
In the last 24 hours I've been called insulting and rude, let's add bully to it today and knowing that all I did was call someone on their bs and let them dig their own grave with the tantrums, slander, the disrespect and blatant disregard for anyone else's' feelings or current situation. What really happened was I simply didn't give her what she wanted. And because of this I'm a horrible person.
So they think anyway.
I lost a friend. Not because I misplaced them, but because I thought they were a better person than they are. I'm actually mourning the loss and hate the steps that have had to be taken in regards to it. I've been in tears more than once today. Bet you didn't know that. I'm the robot, the geek behind the curtain and my heart breaks daily. Add to that a bone deep anger and having to be "PC" ( which is really really difficult for blunt me) and TRYING like hell to take the high road, only to have that sabotaged at every turn. Now what? What next? A witch hunt? It's a sad sad day when the non-christian is the one doing her best to turn the other cheek while the catholic throw stones at glass houses.
And that's the last I will be saying about that.
The last couple days have been trying. Emotionally draining. It's hard when you lose a friend because of their own behavior, even harder when they revert to high school behavior and have their friends make sure to let you know why you're trash.
In the last 24 hours I've been called insulting and rude, let's add bully to it today and knowing that all I did was call someone on their bs and let them dig their own grave with the tantrums, slander, the disrespect and blatant disregard for anyone else's' feelings or current situation. What really happened was I simply didn't give her what she wanted. And because of this I'm a horrible person.
So they think anyway.
I lost a friend. Not because I misplaced them, but because I thought they were a better person than they are. I'm actually mourning the loss and hate the steps that have had to be taken in regards to it. I've been in tears more than once today. Bet you didn't know that. I'm the robot, the geek behind the curtain and my heart breaks daily. Add to that a bone deep anger and having to be "PC" ( which is really really difficult for blunt me) and TRYING like hell to take the high road, only to have that sabotaged at every turn. Now what? What next? A witch hunt? It's a sad sad day when the non-christian is the one doing her best to turn the other cheek while the catholic throw stones at glass houses.
And that's the last I will be saying about that.
Saturday, June 30, 2012
I never said I was PC
So I posted a generic rant today about Pharmacists and the bad attitude and lectures I have experienced. You gotta understand I hear about similar experiences JUST like mine every single day. I get to be angry, I get to be resentful, and I get to let it out. I give hugs, hold hands, give advice and am daily making sure women in my demographic do NOT feel alone. In my other efforts I have to be PC ( for those that don't know what that is or are in Endo or Fibro fog that stands for "Politically Correct") Here is where I get to be me. I am not people friendly, I am out spoken and very blunt. These are good attributes in my non-endo world communications. Hey I can even sell an inflatable sheep with a straight face. What you see, when you follow that link, are words in black and white with just a shadow of the personality behind them. You think my rant on Pharmacist religious rants was rude and insulting? Wait until you read my rant on how Susan B. Kohmen foundation screwed over small town health services, not just Planned Parenthood. Still working on that one though, and you can bet that won't be PC either ;)
Dear Pharmacist
Sir/Madam,
You're ignorant behavior has caused me to lose my sunny disposition. My DOCTOR has prescribed this birth control for a reason. That reason is named " Endometriosis" Yes I know, you have likely never heard of it because you are not a doctor. You are a pharmacist. Time and again you preach your belief and religion to the unsuspecting who are only trying to reclaim their lives. Yes, you're pro-life. I get that, truly. What you fail to grasp is that life continues after one exits the womb. I'm not white knuckling that prescription because I want to prevent birth. With this treatment ,that you're refusing to let me have standing on your religious grounds, I hope to one day have a child. If it works, if I'm on the list for that miracle. But for now, I need what's on that shelf, wearing my neatly typed name. Not that you've asked, but BCP is also used to treat other conditions such as Functional Ovarian Cysts and Adenomyosis. I hope you never have to deal with any of this, the health issues, the excruciating pain, and the religious harassment we deal with at your counter.
Sincerely, Just ONE of 176 million women world wide.
You're ignorant behavior has caused me to lose my sunny disposition. My DOCTOR has prescribed this birth control for a reason. That reason is named " Endometriosis" Yes I know, you have likely never heard of it because you are not a doctor. You are a pharmacist. Time and again you preach your belief and religion to the unsuspecting who are only trying to reclaim their lives. Yes, you're pro-life. I get that, truly. What you fail to grasp is that life continues after one exits the womb. I'm not white knuckling that prescription because I want to prevent birth. With this treatment ,that you're refusing to let me have standing on your religious grounds, I hope to one day have a child. If it works, if I'm on the list for that miracle. But for now, I need what's on that shelf, wearing my neatly typed name. Not that you've asked, but BCP is also used to treat other conditions such as Functional Ovarian Cysts and Adenomyosis. I hope you never have to deal with any of this, the health issues, the excruciating pain, and the religious harassment we deal with at your counter.
Sincerely, Just ONE of 176 million women world wide.
Thursday, June 28, 2012
Where oh where has my little zen gone oh where oh where can it be?
Today I woke up spoonless. I loaded up in my jeep anyway and went to some friends' house in the woods. It was totally worth it! There's something just so satisfying about zipping down some dirt roads and washing it properly in leftover puddles while looking forward to a non-toxic day.( And it was.) Sitting on the back porch, in the wicker furniture, listening to the wind-chimes sing their merry song. Sure it was exhausting, in a "done nothing" kind of way, but that's my zen. Out of the illness box. Sure it tagged along for the ride, but we got a change of scenery, a great meal, good convo and I didn't have to "plan b" it. I tell women every single day to find their silver lining and their one moment of positive- that it can be found no matter the the pain level . " Just because our physical health is wonky doesn't mean our emotional and mental health has to be". Today I'm not a hypocrite, I found mine, and it's lovely!
Wednesday, June 27, 2012
Reflections
Sometimes it's truly difficult to do what I do. I know it doesn't seem like much, and most days all I can say is "you're not alone". It's hardest when I know my angels are crying and their hearts are breaking and I just want to go all rabid big sister on whomever it is that has hurt them this time but I'm just me, the geek behind the curtain. I welcome them, I virtually hold their hands, wipe the tears, and when needed enforce the rules and become the "heavy" . And that's where it starts. Suddenly I'm heartless, a bully and insensitive to other peoples' needs.
I recently took a week long break from it all because I was getting overwhelmed. I didn't realize I would be losing a friend because of the space I needed. June 5th was when I got the definitive news this bone damage is permanent and will get more painful and crippling as I get older. See I knew who I was when I "just" had Endo. Then I got informed that I have Fibro, ok so here I am the woman with "just" endo becoming a medical newb all over again and then my bones hurt. We got a storm that had me laid up until the weather pressure ended and at the point where my meds weren't working to even take the edge off. I usually tell my lovlies at this point to "document the new symptom and see your doctor". So biting my cheek at the irony I documented and saw my doctor. It didn't hit until later that evening when I helped resolve an issue for another and realized I just can't do this right now. I'm no help while I haven't wrapped my head around this news. So I logged for 7 days. Even had it marked on the calender. The ladies that work with me knew what I was dealing with, and all but one understood. I guess what she needed was more important than what I was trying to deal with. So after the 5th "i want, i need, and can you" at 3am I turned my phone off. And "selfishly" took my space, and came to terms with my limitations. Not completely but enough so I could keep doing what I do. I logged, and next thing I know- this person that I relied on, who my angels relied on- "took her bat and went home" because she didn't get her way. I opened the office to see " i have personal issues and will be quitting" or something to that affect and a rude note in my inbox. This person did this when she knew most of us were away from our comps for the day. So I simply told her that the timing was interesting ;) And got a rude reply. This is someone I had been on the phone with 24 hours a day, verbally being there for her, and her kids over this last year. I was invested. I was heartbroken.
So a week goes by. And out of the blue I get 6 texts in a 2 minute period. " I want, I need and can you" No explanation, no communication for a week and then BAM. I ignored them. It didn't stop there, got the exact same texts from her youngest at 9pm. after the " i want, I need and can you" was posted to group. And answered in group. By quite a few people. So as I happen to adore this youngin, I replied with the same responses I had in group. Professionally, because this is my profession. Next day the harassing calls started. I changed my cell number, and hated having to do it. No, it wasn't from this now non-friend but from one of her youngins. So my heart broke a little more. And there it is folks, I'm only human. Even I can only take so much. Today I found the reflection of this side of me and I'm not quite sure if I like it. I would much rather be the geek behind the curtain, not this shadow of a woman who is endo,fibro and broken.
I recently took a week long break from it all because I was getting overwhelmed. I didn't realize I would be losing a friend because of the space I needed. June 5th was when I got the definitive news this bone damage is permanent and will get more painful and crippling as I get older. See I knew who I was when I "just" had Endo. Then I got informed that I have Fibro, ok so here I am the woman with "just" endo becoming a medical newb all over again and then my bones hurt. We got a storm that had me laid up until the weather pressure ended and at the point where my meds weren't working to even take the edge off. I usually tell my lovlies at this point to "document the new symptom and see your doctor". So biting my cheek at the irony I documented and saw my doctor. It didn't hit until later that evening when I helped resolve an issue for another and realized I just can't do this right now. I'm no help while I haven't wrapped my head around this news. So I logged for 7 days. Even had it marked on the calender. The ladies that work with me knew what I was dealing with, and all but one understood. I guess what she needed was more important than what I was trying to deal with. So after the 5th "i want, i need, and can you" at 3am I turned my phone off. And "selfishly" took my space, and came to terms with my limitations. Not completely but enough so I could keep doing what I do. I logged, and next thing I know- this person that I relied on, who my angels relied on- "took her bat and went home" because she didn't get her way. I opened the office to see " i have personal issues and will be quitting" or something to that affect and a rude note in my inbox. This person did this when she knew most of us were away from our comps for the day. So I simply told her that the timing was interesting ;) And got a rude reply. This is someone I had been on the phone with 24 hours a day, verbally being there for her, and her kids over this last year. I was invested. I was heartbroken.
So a week goes by. And out of the blue I get 6 texts in a 2 minute period. " I want, I need and can you" No explanation, no communication for a week and then BAM. I ignored them. It didn't stop there, got the exact same texts from her youngest at 9pm. after the " i want, I need and can you" was posted to group. And answered in group. By quite a few people. So as I happen to adore this youngin, I replied with the same responses I had in group. Professionally, because this is my profession. Next day the harassing calls started. I changed my cell number, and hated having to do it. No, it wasn't from this now non-friend but from one of her youngins. So my heart broke a little more. And there it is folks, I'm only human. Even I can only take so much. Today I found the reflection of this side of me and I'm not quite sure if I like it. I would much rather be the geek behind the curtain, not this shadow of a woman who is endo,fibro and broken.
Monday, June 25, 2012
Arhg!
Sometimes it's really difficult for me to remain silent in the " if you can't say something nice don't say anything at all" advice from my youth. I truly hate selfish people, especially when they add passive/aggressive behavior to it. You're an adult- adults don't take their bat and go home when they don't get what they want. Adults discuss the situation and come to a resolution. Never learned that one? Fine, that's you and your world- stop invading mine with it! SMH
Ok rant over, headache dissipating....... Back to my regularly scheduled life.
What was next on the chaos agenda........oh yeah nap time since mine got rudely interrupted earlier.
Ok rant over, headache dissipating....... Back to my regularly scheduled life.
What was next on the chaos agenda........oh yeah nap time since mine got rudely interrupted earlier.
Sunday, June 24, 2012
Wisdom in a children's book
“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You're on your own. And you know what you know. And YOU are the one who'll decide where to go...”~ Dr. Seuss, Oh, the Places You'll Go!
Sometimes it's the silly words in a children's book that stick with you. I guess I took this a little too much to heart. I was raised in Seattle WA. Lil' Miss 4 footed thang and I explored all the way To Georgia. Are there things I miss? Sure! Pike's Place market, Dick's Drive-in and the Troll under the bridge. Why didn't I go back to Seattle after my marriage broke up? I'm a recovering heroin addict. Seattle was my playground and in the worst moments of my life - relapse is always a temptation. I know it won't take away the problem or the hurt, but I could forget for just a little while and give myself room to breathe. So to help preserve what I've fought for and still fight for, I played gypsy.
I love where I ended up. New people, new places and new playground. One that only knows the snarky me that's been clean for double digits. So how do I maintain this "sobriety" with two chronic pain conditions? By the skin of my teeth and a good support system.
I'm reaching the point in my medical treatment where my NSAID options are getting narrower and narrower to the point of having to cross that medication line. I'm the first one to admit that this scares me. I know I know, pills were never my problem, but there's that voice in my head that reminds me they could one day become the problem. So I set up my support plan with my loved ones here, and I have to remind myself (and others constantly) narcotic pain medication isn't supposed to take the pain completely away- it's use is to take the edge off of it so we can function.
It's heart breaking to me, as a support group owner, to watch women struggle with this condition while they lose sight of "am I taking this because I need to for the pain or because I really really want to for the high". Now don't get me wrong, NOT ALL who depend on heavy pain medication become addicts. That's one of the biggest myths held by the non-endo and non-fibro worlds. These are conditions that can put you past a 10 on the pain scale anywhere from 3-7 days a month to 24/7/365. Pain medications are a must in any competent treatment plan, but so is an open honest relationship with your doctor. I'm blessed in the fact that I have a great Doctor who is even better at not just listening to me and my fears, but also hears what it is I'm not saying.With this, plus my support system, I know I can do this. Who knows maybe one of these days I can get back to being me.
Sometimes it's the silly words in a children's book that stick with you. I guess I took this a little too much to heart. I was raised in Seattle WA. Lil' Miss 4 footed thang and I explored all the way To Georgia. Are there things I miss? Sure! Pike's Place market, Dick's Drive-in and the Troll under the bridge. Why didn't I go back to Seattle after my marriage broke up? I'm a recovering heroin addict. Seattle was my playground and in the worst moments of my life - relapse is always a temptation. I know it won't take away the problem or the hurt, but I could forget for just a little while and give myself room to breathe. So to help preserve what I've fought for and still fight for, I played gypsy.
I love where I ended up. New people, new places and new playground. One that only knows the snarky me that's been clean for double digits. So how do I maintain this "sobriety" with two chronic pain conditions? By the skin of my teeth and a good support system.
I'm reaching the point in my medical treatment where my NSAID options are getting narrower and narrower to the point of having to cross that medication line. I'm the first one to admit that this scares me. I know I know, pills were never my problem, but there's that voice in my head that reminds me they could one day become the problem. So I set up my support plan with my loved ones here, and I have to remind myself (and others constantly) narcotic pain medication isn't supposed to take the pain completely away- it's use is to take the edge off of it so we can function.
It's heart breaking to me, as a support group owner, to watch women struggle with this condition while they lose sight of "am I taking this because I need to for the pain or because I really really want to for the high". Now don't get me wrong, NOT ALL who depend on heavy pain medication become addicts. That's one of the biggest myths held by the non-endo and non-fibro worlds. These are conditions that can put you past a 10 on the pain scale anywhere from 3-7 days a month to 24/7/365. Pain medications are a must in any competent treatment plan, but so is an open honest relationship with your doctor. I'm blessed in the fact that I have a great Doctor who is even better at not just listening to me and my fears, but also hears what it is I'm not saying.With this, plus my support system, I know I can do this. Who knows maybe one of these days I can get back to being me.
Dear Spell check
Dearest Spell Check programs: Endometriosis is NOT spelled wrong! It's treated wrong- there's a difference! I know it's a "minor" thing, but come on now! This condition has been mystifying medical practitioners ( reportedly) since the 1800's, it's been around long enough to not be just a diagnosis but an agreed upon word! Needless to say it's aggravating enough without you questioning it every time I have to type it in a day! FFS
Saturday, June 23, 2012
And in the center ring........
I'm not shattered, i'm now mufti-faceted for better exposure. Sounds good in theory anyway. What the reality is, well that's a different jewel all together. I was diagnosed with Endometriosis in 2004, after a 15 year struggle and the loss of faith in the medical community. I have stage 4 with thoracic and ocular inclusives. Yadda Yadda...... This didn't stop my life, it just made it more complicated.
I decided this wasn't going to stop my life, or my travels and I was going to experience every last drop of life that I could. Got married, got separated ( he couldn't handle the condition or vows of fidelity), took a couple right hand turns and landed in Georgia. Small town Georgia to be exact. Got used to being referred to as the "token yankee", met a great guy, with a beautiful Dyna Glide and the next couple years were fun. There is nothing like heading to Daytona in a pack of great people and just soaking up life. that's what I wanted right? Right. Life view from the passenger seat of the biggest vibrator a woman can get her legs around ;)
In 2010 the Endo monster decided it was tired of being disregarded and put me through a hell of pain leading to shock while bleeding out and er doctors scratching their heads because they skipped Gynecological Conditions in med school. A year of this, and I wouldn't have survived almost sane if it wasn't for my Biker and my Henchwoman. Finally found a doctor here that would listen to me and she helped find the correct medicine combo to help give me my life back. So I made plans, and we all know how Murphy loves when you make other plans lol So I started a potted plant garden, ran out of potting soil and had to go to the store before my rosemary gave up the ghost. Picked up a great mini windchime too- didn't account for a teenager ignoring a red light and sending me back to square one. My poor truck :'(
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