It's been some time since I've posted. A combination of kids being out of school for summer break, busy schedules, FibroFog, and generally feeling a lack in creativity to post anything that was worth posting. It just so happens that I have a few uplifting things to report on so here I am, posting. :-)
I visited a Naturopath for the first time this week. The physician I saw also happens to be an acupuncturist as well, which she utilized on me during my appointment. I had always wanted to see a Naturopath but given that my insurance company didn't cover the cost (as most won't) I felt that it wasn't something within my financial capabilities. (Okay, admittedly I probably could have squeezed it into my negative-functioning budget but the act of spending money on myself, even for health matters, makes me feel guilty - I'd prefer only to spend it for the benefit of my children. So there, the truth.) The only reason I conceded to going this time was because GoogleOffers was offering a fantastic special of a 2hour visit with one of four types of practitioners. I feel lucky that I was paired up with a Naturopath that also is trained in acupuncture. It's like getting a 2for1 deal! :D
I'm still uncertain as to how much better I'll feel in the end of my treatment but at least I'm feeling hopeful again after countless modern medicine doctors have turned me away because I won't agree that loading me up on pills is the best approach for my treatment. My Naturopath has given me a list of lifestyle changes I have to adjust to, the most difficult one so far is the "anti-inflammation diet" which pretty much eliminates most of the foods I WAS able to tolerate given how bad my acid reflux & IBS have become. No milk products, no red meats, no corn products or corn byproducts (that's 90% of American diets anymore!), no sugar, no artificial sweeteners, no wheat, no breads.... ok, I would be better off telling you what I am allowed to eat! In addition to dietary changes, I have sleep habits to change, a new way to think of exercise, and a serious need to learn how to relax and de-stress. But you get the gist of it - Big Changes! I'm willing to make the sacrifice though. I'm so tired of feeling this way - so much pain, severe fatigue, and a lack of desire to continue living some days. This way I can at least say that I'm making an effort - and feeling hopeful for doing so.
As for my business, I am back in the saddle again - so to speak. I have begun to advertise on various websites and am placing new flyers in the community next week. I have calls to place with the American Arthritis Foundation, SW Washington Medical Center, and a number of local agencies that might be able and willing to help me get this support group up and running. All I need to do now is to stay on the horse and hang on tight.
Thursday, October 13, 2011
Monday, April 18, 2011
A little spot of sunshine broke through!
Spring has sprung and there have been two whole days of sunshine in our little corner of Slugville, USA. As much as I love the sunshine, I can't help but feel a bit sorry for myself that the air is still too cold for me to be able to go out and truly enjoy its full worth. Nevertheless, I have all the windows open to allow the rays spill into my otherwise dungeon and I believe that by this afternoon, my Handy-Dandy-Rainbow-Machine may start spinning hundreds of rainbows upon my office ceiling and walls which will add delight to the end of my so-far, very busy day.
In other news, I've been slowly gathering all the necessary ducks in a row in order to start up a Fibromyalgia, Chronic Pain & Chronic Fatigue support group in the Vancouver, WA area. I'm wavering a bit as to whether or not to limit the number of members, by dividing the group into "chapters" once we gain X number in membership. Of course it'd be nice to host large gatherings which can include all members, but in order to keep things on the cozy side I think it's best to have smaller groups so that members can better get to know one another. What do you think?
In other news, I've been slowly gathering all the necessary ducks in a row in order to start up a Fibromyalgia, Chronic Pain & Chronic Fatigue support group in the Vancouver, WA area. I'm wavering a bit as to whether or not to limit the number of members, by dividing the group into "chapters" once we gain X number in membership. Of course it'd be nice to host large gatherings which can include all members, but in order to keep things on the cozy side I think it's best to have smaller groups so that members can better get to know one another. What do you think?
Monday, March 28, 2011
Stormclouds and shadows
I'm so tired and weary today. After having been up with my preschooler all night from restless nightmares, I was finally able to sneak off the edge (and I do mean the very edge, half mattress/half trundle frame - no pillow) of her bed at around 5:30am and crawl into my own bed only to be awakened less than an hour later by my 1 year old to nurse and get up for the day. No rest for the weary because then I was up to help my autistic 12yr old daughter bath, help fetch clothing outfits for the other kids, sign school papers, help answer homework questions and make breakfast for all. Rest after? Heck now! Once the older kids were out the door it was time to start laundry, do a load of dishes, attempt to pick up the toy clutter that had already begun creating a minefield upon my living room floor...and this afternoon I'm scheduled to volunteer with my 10 yr old's girl scout troop meeting.
Did I mention I slipped up on the stairs while trying to bring up a load of folded towels and twisted my knee?
It's days like today that I am painfully reminded of why rest and relaxation, stress management, and good self care are crucial to helping Fibromyalgia sufferers not suffer as much. Today, I feel like shit.
Sure, I considered calling the troop leader and canceling but at this point, I'm scheduled to be there in 2 hours and she'd hardly have enough time to find another volunteer. If she has no volunteer, with 12 girl scouts, she'd likely cancel, making me feel like an ass.
Guilt, that's another factor that comes into play with Fibromyalgia. Let's talk about guilt a little bit, shall we?
I feel guilty that I am not able to do all the things I want to do. It effects not only me, but my children, my significant other, my friends, my neighbors, my kids' teachers... the list goes on and on. Guilt is one of those things that Fibro sufferers are often told to "let go" of. Easier said than done! For me, it's either I feel guilty for NOT being able to do things for myself & for others - or - I go the other way and overdo things because of guilt and wind up feeling even guiltier later for being laid up for 3 days in a row (or longer) in order to recover.
The words, "It isn't fair!", has escaped my lips on more than one occasion I must admit. Sometimes in the form of screaming and yelling, other times in utter defeat and tearful whispers.
So how do I deal with guilt?
To be honest, it changes from day to day. Some days I give into it and work myself to the core until I just cannot physically move anymore. Usually I feel like I've at least accomplished something at the end of the day (sure, it may just be a load of laundry and a load of dishes - but hey, ya give what you can!). Other days, I rest up, doing only minimal tasks and spend whatever energy I have left on reading story books with my little ones and watching tv with the older kids once they come home from school. No matter what I do, I usually pray that the next day will be better and I'll try again when the sun comes up.
Last week I started my efforts in what I hope to be a very successful support group for the Vancouver area. My therapist is very enthusiastic and encouraging of this endeavor and I must admit, the prospect of having other Fibro survivors (I hate saying sufferers when I'm trying to speak in a positive light) to go to for emotional support and in turn, offer what support to them that I can give - is...well, empowering. So often we feel like we are out of control of our lives when faced with chronic pain/fatigue. These are my ways to take that control back! Writing and sharing with others...
Finding ways to empower thyself. At the very least, it's a step in the right direction to combating guilt.
Dinner is my next battle tonight. But that's another topic altogether. ;)
Did I mention I slipped up on the stairs while trying to bring up a load of folded towels and twisted my knee?
It's days like today that I am painfully reminded of why rest and relaxation, stress management, and good self care are crucial to helping Fibromyalgia sufferers not suffer as much. Today, I feel like shit.
Sure, I considered calling the troop leader and canceling but at this point, I'm scheduled to be there in 2 hours and she'd hardly have enough time to find another volunteer. If she has no volunteer, with 12 girl scouts, she'd likely cancel, making me feel like an ass.
Guilt, that's another factor that comes into play with Fibromyalgia. Let's talk about guilt a little bit, shall we?
I feel guilty that I am not able to do all the things I want to do. It effects not only me, but my children, my significant other, my friends, my neighbors, my kids' teachers... the list goes on and on. Guilt is one of those things that Fibro sufferers are often told to "let go" of. Easier said than done! For me, it's either I feel guilty for NOT being able to do things for myself & for others - or - I go the other way and overdo things because of guilt and wind up feeling even guiltier later for being laid up for 3 days in a row (or longer) in order to recover.
The words, "It isn't fair!", has escaped my lips on more than one occasion I must admit. Sometimes in the form of screaming and yelling, other times in utter defeat and tearful whispers.
So how do I deal with guilt?
To be honest, it changes from day to day. Some days I give into it and work myself to the core until I just cannot physically move anymore. Usually I feel like I've at least accomplished something at the end of the day (sure, it may just be a load of laundry and a load of dishes - but hey, ya give what you can!). Other days, I rest up, doing only minimal tasks and spend whatever energy I have left on reading story books with my little ones and watching tv with the older kids once they come home from school. No matter what I do, I usually pray that the next day will be better and I'll try again when the sun comes up.
Last week I started my efforts in what I hope to be a very successful support group for the Vancouver area. My therapist is very enthusiastic and encouraging of this endeavor and I must admit, the prospect of having other Fibro survivors (I hate saying sufferers when I'm trying to speak in a positive light) to go to for emotional support and in turn, offer what support to them that I can give - is...well, empowering. So often we feel like we are out of control of our lives when faced with chronic pain/fatigue. These are my ways to take that control back! Writing and sharing with others...
Finding ways to empower thyself. At the very least, it's a step in the right direction to combating guilt.
Dinner is my next battle tonight. But that's another topic altogether. ;)
Sunday, March 6, 2011
Storms - The Origin of Rainbows
Have you ever opened your mouth and started rambling your inner-most thoughts out of frustration of a situation, only to find that once they come out, they just keep on flowing even when you realize as your speaking that what you're saying isn't meant to be voiced aloud yet - or perhaps ever? As the words continue to flow, you think of words to use that seem less harsh but it's too late, the words are out there and the truth (or what is portrayed as such) is out. It's like the dam crumbles and the raging torrent of flood waters spew forth and no amount of bubble gum is gonna patch the hole. Some things can never be unspoken, no matter how much we wish them to be.
That's what I did last night.
I said some things to someone I love dearly, because I honestly believed (based on other people's opinions, really) that it was in the best interest of this person - maybe even in the best interest of me - which certainly meant the best interest of all others involved. Only, as soon as the words came out of my mouth and had time to settle in the air a while, something just didn't *feel* right. I felt my stomach churning, my heart racing, and an overwhelming emptiness begin to surge. And while that other person, who will remain nameless, stood across from me obviously pained, I realized that the words I had just uttered were, indeed, terribly wrong but without another way to fix the dilemma at hand, I sat in still silence for the remainder of the evening trying to figure out a way to correct the damage.
Sleeping was difficult. I woke up unrefreshed and in more pain than I've been in recent days. I can only attribute all the physical pain I'm in to this recent emotional turmoil. Stress worsens the daily pain of Fibromyalgia and therefore must be minimized. My choice to speak out last night was brought about by frustration and a desperate need to remove a source of stress in my life. Of course I was consciously aware that in the background I have had much time to consult with friends and my therapist, and think about ways to adjust things but too many negative encounters had proven that some kind of action on my part was necessary. The problem now is that I don't entirely trust the words I spoke to be the full truth. I felt backed into a corner and honestly felt I had no choice but to say the only thing I thought could immediately remedy the situation. Here I am regretting every syllable.
I need to de-stress my life. My world around me has been churning like the angry, cluttered clouds of a tornado for a great number of years. Perhaps that is what got me to the unhealthy condition I'm now in, in part; the accumulated stress and anxieties from years of abuse, heartache, loss, and stifled emotions. It is no mystery to medical science how extreme amounts of stress can play a huge role on our bodies ability to heal and ward off disease. Granted, even in times of happiness and relatively care-free days I have had illness and poor health. I'm certain that the genetics plays its part too. My mother's side of the family is wrought with varying forms of cancer, arthritis, heart failure, diabetes, arthritis, lupus, and addiction - just to name a few. My father's promises a similar fate but includes digestive diseases, hearing loss, vision ailments, and mental health woes. Still, I wonder if my health would not be in the declining state it's in if it weren't for being a member of a dysfunctional family and having such a challenged upbringing and stress-filled adulthood?
Then again, I'm speculating on something that cannot be changed. Which does me no good. The question is, how do I de-stress my life without negatively impacting those I love? Do I discontinue ties with all who might be attributing to that stress? Even if in turn, they are my only form of support? Difficult to follow along if you're not in the know, I understand. But being as I'm really the only one who follows my own blog right now - I'm gonna run with it anyway.
The dilemma that I constantly come to in my life is being able to choose what's in my own best interest. I'm a people pleaser. I don't like to say "no" to others for fear of retaliation. I don't like to ask others for help for fear of rejection or judgement. And I don't like others to offer help to me, even when I'm in need of assistance because I feel vulnerable. Given my condition, this makes it very difficult for anyone to be supportive if there were anyone in mind to do so. Logically I know that I need to make adjustments to ease my discomfort but, typically doing that makes me feel useless, weak, and like my condition is in control - not me. I am known for putting my children first, which I believe is how it should be - even if doing so makes me have to take an extra three days to heal and rest. I have been told the flip side of this is that if I don't listen to my body's signals that I've been overdoing things that the kids will suffer more for my not having taken the time to rest than if I push myself and am forced to rest later on. I am learning to balance this on a daily basis and feel that I'm catching on.
With matters of the heart or emotions though, this is a much bigger challenge. How does one take a breather from emotional exhaustion? Especially when the physical condition of pain & daily stressors are taking a toll on you? And in respect to that, how does one decide what's in their best interest? How is that any different from being selfish? Is being selfish necessarily a bad thing in this case? And, what if what is right for me isn't in the best interest of someone else - or vice versa? Would it make me a bad person to resume as normal with that individual because the alternative of being without them makes my life feel sad and lonely? Anyone happen to know where the sands of time resides so I can go back and do it all over again, the right way?
I think I'm rambling in this post. I blame Fibrofog today. :P
That's what I did last night.
I said some things to someone I love dearly, because I honestly believed (based on other people's opinions, really) that it was in the best interest of this person - maybe even in the best interest of me - which certainly meant the best interest of all others involved. Only, as soon as the words came out of my mouth and had time to settle in the air a while, something just didn't *feel* right. I felt my stomach churning, my heart racing, and an overwhelming emptiness begin to surge. And while that other person, who will remain nameless, stood across from me obviously pained, I realized that the words I had just uttered were, indeed, terribly wrong but without another way to fix the dilemma at hand, I sat in still silence for the remainder of the evening trying to figure out a way to correct the damage.
Sleeping was difficult. I woke up unrefreshed and in more pain than I've been in recent days. I can only attribute all the physical pain I'm in to this recent emotional turmoil. Stress worsens the daily pain of Fibromyalgia and therefore must be minimized. My choice to speak out last night was brought about by frustration and a desperate need to remove a source of stress in my life. Of course I was consciously aware that in the background I have had much time to consult with friends and my therapist, and think about ways to adjust things but too many negative encounters had proven that some kind of action on my part was necessary. The problem now is that I don't entirely trust the words I spoke to be the full truth. I felt backed into a corner and honestly felt I had no choice but to say the only thing I thought could immediately remedy the situation. Here I am regretting every syllable.
I need to de-stress my life. My world around me has been churning like the angry, cluttered clouds of a tornado for a great number of years. Perhaps that is what got me to the unhealthy condition I'm now in, in part; the accumulated stress and anxieties from years of abuse, heartache, loss, and stifled emotions. It is no mystery to medical science how extreme amounts of stress can play a huge role on our bodies ability to heal and ward off disease. Granted, even in times of happiness and relatively care-free days I have had illness and poor health. I'm certain that the genetics plays its part too. My mother's side of the family is wrought with varying forms of cancer, arthritis, heart failure, diabetes, arthritis, lupus, and addiction - just to name a few. My father's promises a similar fate but includes digestive diseases, hearing loss, vision ailments, and mental health woes. Still, I wonder if my health would not be in the declining state it's in if it weren't for being a member of a dysfunctional family and having such a challenged upbringing and stress-filled adulthood?
Then again, I'm speculating on something that cannot be changed. Which does me no good. The question is, how do I de-stress my life without negatively impacting those I love? Do I discontinue ties with all who might be attributing to that stress? Even if in turn, they are my only form of support? Difficult to follow along if you're not in the know, I understand. But being as I'm really the only one who follows my own blog right now - I'm gonna run with it anyway.
The dilemma that I constantly come to in my life is being able to choose what's in my own best interest. I'm a people pleaser. I don't like to say "no" to others for fear of retaliation. I don't like to ask others for help for fear of rejection or judgement. And I don't like others to offer help to me, even when I'm in need of assistance because I feel vulnerable. Given my condition, this makes it very difficult for anyone to be supportive if there were anyone in mind to do so. Logically I know that I need to make adjustments to ease my discomfort but, typically doing that makes me feel useless, weak, and like my condition is in control - not me. I am known for putting my children first, which I believe is how it should be - even if doing so makes me have to take an extra three days to heal and rest. I have been told the flip side of this is that if I don't listen to my body's signals that I've been overdoing things that the kids will suffer more for my not having taken the time to rest than if I push myself and am forced to rest later on. I am learning to balance this on a daily basis and feel that I'm catching on.
With matters of the heart or emotions though, this is a much bigger challenge. How does one take a breather from emotional exhaustion? Especially when the physical condition of pain & daily stressors are taking a toll on you? And in respect to that, how does one decide what's in their best interest? How is that any different from being selfish? Is being selfish necessarily a bad thing in this case? And, what if what is right for me isn't in the best interest of someone else - or vice versa? Would it make me a bad person to resume as normal with that individual because the alternative of being without them makes my life feel sad and lonely? Anyone happen to know where the sands of time resides so I can go back and do it all over again, the right way?
I think I'm rambling in this post. I blame Fibrofog today. :P
Friday, February 25, 2011
Even Rainclouds Can Produce the Most Beautiful Flowers
So, the blog is up and I'm still learning how to utilize it to it's fullest potential. Given I have like.. fewer readers than I can count on one hand - LOL - I'm guessing that the support I expected to read here is going to have to come from within, through my own words. That's cool though, afterall, this is all about learning to live in a more positive manner.
Last Friday was spent primarily vegetating on the couch in between laundry loads and trying to keep up with my 3 & 1 year olds. Then the next day my time was spent, for the most part, making a run to a store called Relax the Back so that I could purchase this in hopes that it might help ease some of my pain. (I know what you're thinking and no, I couldn't afford it either! It was a gift). The rest of the past week has been spent formulating various plans, making phone calls, spending time with my kids, and deciding whether or not I had the energy to blog. You can tell how well that went. :P
It isn't that I haven't had anything to report. I've had some interesting happenings in my MOMS Club group, *started* cleaning my home which in turn...caused me to have a couple of unpleasant days in pain, I had a couples counseling appt and also my own therapy appointment, I started adding new ideas to my current list of "things I'd like to do in the next year to benefit my heatlh", and then as if that wasn't enough I decided to start up a Fibromyalgia Support Group in my county as there isn't one (much to the encouragement of my counselor). I'm just your average over-achiever. (No wonder I'm feeling worn down, right? LOL). OH, did I mention that we had a couple days of snow & ice? I LOVE snow, from the warmth of a cozy fireside with a blanket, a good cup of tea, and a book - but that's another topic. ;)
Ultimately my favorite part of my last week has been that my kids have been home with me. Honestly, if it weren't for my kids, I don't know where I'd be right now - but I know for certain that it wouldn't be a happy place. I love my children to my very core. You'll find as you read along that I'll be speaking of them often. They keep perspective in my life when I'm on my third day in a row on the couch and wishing I could just get a diagnosis of cancer so that I'd at least have an out. (I know - horrible sounding isn't it?) But seriously, they give me a reason to continue getting out of bed every morning. No matter how bad the pain gets, all it takes is a loving hug from my son, a silly giggle from one of my daughters, or a snuggle from my baby and I am reminded that they are my reason for being. <3
Speaking of my children, I suppose this is a good time to give them official nicknames so that I can keep their identities private while still having names to refer to them as for all of my readers, ya know - the ones I'll eventually have when my blog becomes famous for changing the lives of other chronic pain suffers. (*scoffs*) But seriously, I am bound to be talking about them ALOT over the next... eternity...so, without further ado, let me introduce the loves of my life, the bits & pieces of my soul, and the very reason for my existence.
Boo is my only son. He is particularly special to me because it is he who first granted me the title of Mother. He is absolutely brilliant, kind, generous, a fantastic big brother, and a smart ass. I'm sure that last one is my fault and I'm not ashamed to take credit for it! :P This year he is attending his last year of middle school so that he can continue on to high school. It makes me feel incredibly proud and, deeply sad that he's growing up so fast. It seems like just yesterday I was teaching him how to toddle around the house, how to eat with a fork, and how to ride his first two wheeler bicycle. Now he's far surpassed me as he is in an advanced curriculum of physics & calculus; classes I never advanced to even in college. He's also surpassed me in height, but I'll save that embarrassment for another post.
Flitterbee is my angel on earth. At a very young age she reacted severely to immunizations and not long after, began to lose most of her acquired social skills and then her ability to speak regressed back to baby babble (I prefer the term "Ewok talk" because I'm a nerd and that's what her small, cooing noises sounded like.) She has since been diagnosed with severe autism. This may be something you'd feel sorry for me about but I assure you there is nothing to be sorry for. She is so beautiful, a gentle spirit, playful & mischievous with never a mal-intent, curious and eager to learn, and her favorite thing is to get hugs, be tickled, or play tag. Who could possibly complain. Having her in my life has taught me invaluable lessons in patience, persistence, and humility. While I am not thankful that she will forever have to encounter the social ignorance and ugliness of humanity and all that it entails, I am grateful for her innocence and perfect spirit to keep reminding me of what life is really all about.
Kitten is almost literally my Mini-Me. In fact images of me at each equivalent stage in her life make her appear as if I have a twin. Her personality and charm are so akin to how I was at her age. And before I forget to mention, she is so amazingly talented, artistic, musically inclined - and also just like her mom, her heart is worn on her sleeve for all to behold. Kitten has some stubborn pride issues (I wish I could say that wasn't passed on by me), and her recently diagnosed ADD gives her struggles with being ditzy and forgetful at times.
Pookie is my artsy, crafty, creative preschooler. She LOVES to sing, dance, wear pretty-princess clothes and girly leggings, and she is as sharp as a tack when it comes to calling me and her dad out on our shenanigans. She is amazingly bright! So much so that we had to enroll her into preschool at the age of three because she was craving to learn EVERYTHING there was to know! She knows her ABC's, most of her colors, can count to ten, and is learning how to add and subtract - all without the fad programs like "Your Baby Can Read". I'm very proud of her and she's such a joy to be around, with her gentle spirit and her eagerness to interact and make everyone around her smile and be happy. :)
Moonchkin is my baby. Well she isn't exactly a baby anymore as she's recently learned to walk just prior to her first birthday and now she's mastered how to climb onto (or INTO) just about anything that isn't taller than she is! LOL She isn't talking yet but she points, gives eye contact, and responds to her name so I feel fairly confident that she won't have to struggle with any delays as her oldest sister has. (That's one thing about having subsequent children after having a child diagnosed on the spectrum, you're ALWAYS watching out for signs that the gene was passed on to more than one child.) Fortunately for her, she has a different father than Flitterbee and given HIS history of social oddities I believe it's safe to say that Moonchkin is in the clear!
I am often asked if I'm finished having children. I find that to be an offensive question because it is usually preempted with eyes bulging, eyebrows raised incredulously, and accompanied with an aire of "Geez, she's either Mormon or trying to "over-populate the planet"! For the record, I was raised Mormon - and am VERY NOT Mormon anymore thanks to craptacular parentage and have no desire to overwhelm the planet with minature versions of myself. However, I DO have every right and intention of making up for my unhealthy and dysfunctional upbringing by creating a family of my own and raising them with morals, values, self-confidence, and an understanding that they will be loved unconditionally for the rest of their eternal lives.
There you have it. My reason for being. Flowers have been formed from my past rainclouds, and they are beautiful. <3
Believe it or not, it took me nearly a full week to complete this one post - let's see how I do next time! ;)
Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.
~Rabindranath Tagore
Last Friday was spent primarily vegetating on the couch in between laundry loads and trying to keep up with my 3 & 1 year olds. Then the next day my time was spent, for the most part, making a run to a store called Relax the Back so that I could purchase this in hopes that it might help ease some of my pain. (I know what you're thinking and no, I couldn't afford it either! It was a gift). The rest of the past week has been spent formulating various plans, making phone calls, spending time with my kids, and deciding whether or not I had the energy to blog. You can tell how well that went. :P
It isn't that I haven't had anything to report. I've had some interesting happenings in my MOMS Club group, *started* cleaning my home which in turn...caused me to have a couple of unpleasant days in pain, I had a couples counseling appt and also my own therapy appointment, I started adding new ideas to my current list of "things I'd like to do in the next year to benefit my heatlh", and then as if that wasn't enough I decided to start up a Fibromyalgia Support Group in my county as there isn't one (much to the encouragement of my counselor). I'm just your average over-achiever. (No wonder I'm feeling worn down, right? LOL). OH, did I mention that we had a couple days of snow & ice? I LOVE snow, from the warmth of a cozy fireside with a blanket, a good cup of tea, and a book - but that's another topic. ;)
Ultimately my favorite part of my last week has been that my kids have been home with me. Honestly, if it weren't for my kids, I don't know where I'd be right now - but I know for certain that it wouldn't be a happy place. I love my children to my very core. You'll find as you read along that I'll be speaking of them often. They keep perspective in my life when I'm on my third day in a row on the couch and wishing I could just get a diagnosis of cancer so that I'd at least have an out. (I know - horrible sounding isn't it?) But seriously, they give me a reason to continue getting out of bed every morning. No matter how bad the pain gets, all it takes is a loving hug from my son, a silly giggle from one of my daughters, or a snuggle from my baby and I am reminded that they are my reason for being. <3
Speaking of my children, I suppose this is a good time to give them official nicknames so that I can keep their identities private while still having names to refer to them as for all of my readers, ya know - the ones I'll eventually have when my blog becomes famous for changing the lives of other chronic pain suffers. (*scoffs*) But seriously, I am bound to be talking about them ALOT over the next... eternity...so, without further ado, let me introduce the loves of my life, the bits & pieces of my soul, and the very reason for my existence.
Boo is my only son. He is particularly special to me because it is he who first granted me the title of Mother. He is absolutely brilliant, kind, generous, a fantastic big brother, and a smart ass. I'm sure that last one is my fault and I'm not ashamed to take credit for it! :P This year he is attending his last year of middle school so that he can continue on to high school. It makes me feel incredibly proud and, deeply sad that he's growing up so fast. It seems like just yesterday I was teaching him how to toddle around the house, how to eat with a fork, and how to ride his first two wheeler bicycle. Now he's far surpassed me as he is in an advanced curriculum of physics & calculus; classes I never advanced to even in college. He's also surpassed me in height, but I'll save that embarrassment for another post.
Flitterbee is my angel on earth. At a very young age she reacted severely to immunizations and not long after, began to lose most of her acquired social skills and then her ability to speak regressed back to baby babble (I prefer the term "Ewok talk" because I'm a nerd and that's what her small, cooing noises sounded like.) She has since been diagnosed with severe autism. This may be something you'd feel sorry for me about but I assure you there is nothing to be sorry for. She is so beautiful, a gentle spirit, playful & mischievous with never a mal-intent, curious and eager to learn, and her favorite thing is to get hugs, be tickled, or play tag. Who could possibly complain. Having her in my life has taught me invaluable lessons in patience, persistence, and humility. While I am not thankful that she will forever have to encounter the social ignorance and ugliness of humanity and all that it entails, I am grateful for her innocence and perfect spirit to keep reminding me of what life is really all about.
Kitten is almost literally my Mini-Me. In fact images of me at each equivalent stage in her life make her appear as if I have a twin. Her personality and charm are so akin to how I was at her age. And before I forget to mention, she is so amazingly talented, artistic, musically inclined - and also just like her mom, her heart is worn on her sleeve for all to behold. Kitten has some stubborn pride issues (I wish I could say that wasn't passed on by me), and her recently diagnosed ADD gives her struggles with being ditzy and forgetful at times.
Pookie is my artsy, crafty, creative preschooler. She LOVES to sing, dance, wear pretty-princess clothes and girly leggings, and she is as sharp as a tack when it comes to calling me and her dad out on our shenanigans. She is amazingly bright! So much so that we had to enroll her into preschool at the age of three because she was craving to learn EVERYTHING there was to know! She knows her ABC's, most of her colors, can count to ten, and is learning how to add and subtract - all without the fad programs like "Your Baby Can Read". I'm very proud of her and she's such a joy to be around, with her gentle spirit and her eagerness to interact and make everyone around her smile and be happy. :)
Moonchkin is my baby. Well she isn't exactly a baby anymore as she's recently learned to walk just prior to her first birthday and now she's mastered how to climb onto (or INTO) just about anything that isn't taller than she is! LOL She isn't talking yet but she points, gives eye contact, and responds to her name so I feel fairly confident that she won't have to struggle with any delays as her oldest sister has. (That's one thing about having subsequent children after having a child diagnosed on the spectrum, you're ALWAYS watching out for signs that the gene was passed on to more than one child.) Fortunately for her, she has a different father than Flitterbee and given HIS history of social oddities I believe it's safe to say that Moonchkin is in the clear!
I am often asked if I'm finished having children. I find that to be an offensive question because it is usually preempted with eyes bulging, eyebrows raised incredulously, and accompanied with an aire of "Geez, she's either Mormon or trying to "over-populate the planet"! For the record, I was raised Mormon - and am VERY NOT Mormon anymore thanks to craptacular parentage and have no desire to overwhelm the planet with minature versions of myself. However, I DO have every right and intention of making up for my unhealthy and dysfunctional upbringing by creating a family of my own and raising them with morals, values, self-confidence, and an understanding that they will be loved unconditionally for the rest of their eternal lives.
There you have it. My reason for being. Flowers have been formed from my past rainclouds, and they are beautiful. <3
Believe it or not, it took me nearly a full week to complete this one post - let's see how I do next time! ;)
Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.
~Rabindranath Tagore
Thursday, February 17, 2011
Creating Your Own Silver Linings...for Dummies
I haven't always been the healthiest person but I'd like to think that when compared to those who suffered from disabling or terminal conditions, I had it pretty good growing up. I had frequent ear infections as a child, caught the latest viral bugs going around school just the same as the next kid, sprained ankles, twisted knees, and the like. When I was 12 years old, everything in terms of my health changed after I received a diagnosis of mononucleosis/Epstein Barr virus.
I believe that mono was quite possibly the cause and the beginning of a great number of years of declining health. I'm sure the multitude of struggles in my life haven't exactly helped keep illness and emotional distress at bay. To spare the drama and time consuming details all in one post (which will bore not only you to tears, but me as well) I will keep from sharing my lengthy list of symptoms for now. The short list is that over the past six years I've been seen by numerous doctors and so far have been diagnosed with "severe" Fibromyalgia, Chronic Fatigue Syndrome, Ulnar Tunnel, Sciatica, RLS, PTSD, Depression, and it seems that I have an underlying (and yet to be diagnosed) autoimmune disease.
However, over the past three years I've experienced a steady decline in my mood, my pain, and my overall health. I believe this to be, in part, because I haven't had adequate medical care. (This, of course, is a gross understatement but because I'm trying to keep this on a positive note today I'll refrain from ranting.) But also because also there is a vicious cycle when someone is ill with chronic pain. Persistent pain naturally causes a person to become more sedate and reclusive, being more sedate and reclusive in turn worsens the pain and increases depression which then contributes to more pain. Rinse, repeat. Inadequate care combined with the aforementioned vicious cycle equates to a very miserable existence. With five children, one of which has severe autism and two who are still very young (one age 3 and another age 13months) it is obvious that I don't have the time to waste on illness, pain, fatigue, or emotional distress. Afterall, mothering five kids offers that all on its own!
I have allowed the chaos to take control of me long enough. I'm done with begging craptacular doctors to give me the respect and time I deserve. I'm frustrated with all the blood tests, urine samples, MRI's, and other diagnostic testing that doesn't prove anything more than that my body is a complicated pool of something being wrong, only to then hear a doctor say, "Something is definitely wrong, we just don't know what yet." I'm weary of the self-defeating behaviors that stem from those dismal doctor appointments that aren't helping me feel any better and only worsen my anxiety and feelings of guilt. Modern medicine is doing very little, if not worsening, my condition and if I'm going to improve my situation, I have to take matters into my own hands. Consider this my official announcement to all friends, family and the cyberfolk who happen to pass this way; today I am taking a stand and I would greatly appreciate any support or words of encouragement as I push ahead and move forward with alternative treatments.
Within six months I hope to have completed, will be continuing with, or have at least tried the following in an effort to lessen my depression & anxieties, ease my pain, improve my overall health, and ultimately take control back of my life! After those six months, I'll revisit and re-evaluate my next step. My hope is to make a positive step in the right direction. Feel free to comment, commiserate, share your own stories, or just lurk. Your job, if you so choose to accept it, is to be my support system and in turn, I hope to be your inspiration. All I ask is that you please be respectful and gentle in your criticisms. I'll warn you now that I can be a chatterbox and won't always make sense but I will do my best to answer questions and respond to posts.
And now for my plan:
1) I am starting a blog (and here it is!) to document my journey through my healing process both physically and emotionally. Obviously the healing is really only in the beginning stages so bear with me as I work on less negativity and more positivity. This will help me keep on track , will assist me in keeping positive and
2) I will get a 30-60 minute massage (depending on financial limitations) at least 2 times per month to assist in minimizing pain and stress. In between, I will utilize hot baths and/hot tubs as available.
3) I will strive for a minimum of 30 minutes each day for myself to de-stress. This may seem like an easy task but trust me, it will likely be one of my greatest challenges.
4) I will make efforts to improve my sleep and my quality of sleep. The use of a regular schedule, melatonin, relaxation techniques, and music will all be accessed as needed.
5) I will improve my organization and time management skills and get them back on track to help alleviate stress and so that I do not overbook myself. This will include using the word, "No. I'm not able to do that." when I need to rather than feeling bad for having thought of declining to help someone else out with something. (Yeah, so that's the plan but with five kids and loads of self-guilting...LOL We'll see how well I do after the first week! :P )
6) Once pain is diminished enough to allow for improved mobility, I will enroll myself in either a Yoga or Tai Chi class (one that is designed for arthritis patients)
7) I will save up money to see a GOOD Rheumatologist (if you have any good references, please let me know!) outside of my insurance and present him/her with all my blood test results, my list of symptoms, and a very held back tongue and see if I can get more answers without him/her knowing beforehand that I have already been diagnosed with Fibromyalgia. I have my suspicions that once a Dr knows you have that, they really don't care to bother finding out what ELSE may exist, potentially missing vital diagnoses.
I can already tell that this blogging stuff is going to take some getting used to. It is 9:30 at night and I began this single post sometime around 10:30 this morning. Gotta love distractions! :P
I believe that mono was quite possibly the cause and the beginning of a great number of years of declining health. I'm sure the multitude of struggles in my life haven't exactly helped keep illness and emotional distress at bay. To spare the drama and time consuming details all in one post (which will bore not only you to tears, but me as well) I will keep from sharing my lengthy list of symptoms for now. The short list is that over the past six years I've been seen by numerous doctors and so far have been diagnosed with "severe" Fibromyalgia, Chronic Fatigue Syndrome, Ulnar Tunnel, Sciatica, RLS, PTSD, Depression, and it seems that I have an underlying (and yet to be diagnosed) autoimmune disease.
However, over the past three years I've experienced a steady decline in my mood, my pain, and my overall health. I believe this to be, in part, because I haven't had adequate medical care. (This, of course, is a gross understatement but because I'm trying to keep this on a positive note today I'll refrain from ranting.) But also because also there is a vicious cycle when someone is ill with chronic pain. Persistent pain naturally causes a person to become more sedate and reclusive, being more sedate and reclusive in turn worsens the pain and increases depression which then contributes to more pain. Rinse, repeat. Inadequate care combined with the aforementioned vicious cycle equates to a very miserable existence. With five children, one of which has severe autism and two who are still very young (one age 3 and another age 13months) it is obvious that I don't have the time to waste on illness, pain, fatigue, or emotional distress. Afterall, mothering five kids offers that all on its own!
I have allowed the chaos to take control of me long enough. I'm done with begging craptacular doctors to give me the respect and time I deserve. I'm frustrated with all the blood tests, urine samples, MRI's, and other diagnostic testing that doesn't prove anything more than that my body is a complicated pool of something being wrong, only to then hear a doctor say, "Something is definitely wrong, we just don't know what yet." I'm weary of the self-defeating behaviors that stem from those dismal doctor appointments that aren't helping me feel any better and only worsen my anxiety and feelings of guilt. Modern medicine is doing very little, if not worsening, my condition and if I'm going to improve my situation, I have to take matters into my own hands. Consider this my official announcement to all friends, family and the cyberfolk who happen to pass this way; today I am taking a stand and I would greatly appreciate any support or words of encouragement as I push ahead and move forward with alternative treatments.
Within six months I hope to have completed, will be continuing with, or have at least tried the following in an effort to lessen my depression & anxieties, ease my pain, improve my overall health, and ultimately take control back of my life! After those six months, I'll revisit and re-evaluate my next step. My hope is to make a positive step in the right direction. Feel free to comment, commiserate, share your own stories, or just lurk. Your job, if you so choose to accept it, is to be my support system and in turn, I hope to be your inspiration. All I ask is that you please be respectful and gentle in your criticisms. I'll warn you now that I can be a chatterbox and won't always make sense but I will do my best to answer questions and respond to posts.
And now for my plan:
1) I am starting a blog (and here it is!) to document my journey through my healing process both physically and emotionally. Obviously the healing is really only in the beginning stages so bear with me as I work on less negativity and more positivity. This will help me keep on track , will assist me in keeping positive and
2) I will get a 30-60 minute massage (depending on financial limitations) at least 2 times per month to assist in minimizing pain and stress. In between, I will utilize hot baths and/hot tubs as available.
3) I will strive for a minimum of 30 minutes each day for myself to de-stress. This may seem like an easy task but trust me, it will likely be one of my greatest challenges.
4) I will make efforts to improve my sleep and my quality of sleep. The use of a regular schedule, melatonin, relaxation techniques, and music will all be accessed as needed.
5) I will improve my organization and time management skills and get them back on track to help alleviate stress and so that I do not overbook myself. This will include using the word, "No. I'm not able to do that." when I need to rather than feeling bad for having thought of declining to help someone else out with something. (Yeah, so that's the plan but with five kids and loads of self-guilting...LOL We'll see how well I do after the first week! :P )
6) Once pain is diminished enough to allow for improved mobility, I will enroll myself in either a Yoga or Tai Chi class (one that is designed for arthritis patients)
7) I will save up money to see a GOOD Rheumatologist (if you have any good references, please let me know!) outside of my insurance and present him/her with all my blood test results, my list of symptoms, and a very held back tongue and see if I can get more answers without him/her knowing beforehand that I have already been diagnosed with Fibromyalgia. I have my suspicions that once a Dr knows you have that, they really don't care to bother finding out what ELSE may exist, potentially missing vital diagnoses.
I can already tell that this blogging stuff is going to take some getting used to. It is 9:30 at night and I began this single post sometime around 10:30 this morning. Gotta love distractions! :P
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