I Try Not to Hate Her

I try not to hate her

But I do.  I really do very often hate her.

She’s just so awkward.  She can hardly put sentences together.  She repeats herself constantly, and can’t seem to remember that she’s told you that same thing over and over again.

She used to be sharp.  When she had something to say, she could find the words easily, quickly, without all of the frustration.  I really thought she was smart.  That she was going to do big things.  Now, she often spends so much time trying to find the word she was looking for that she forgets what it was that she was going to say in the first place.  It’s like she’s become… unintelligent, and scattered.

She used to be passionate about taking care of herself and she was really active.  She loved to exercise.  She would go running, go to yoga classes, do workout videos at home; she even loved playing basketball… she was super competitive.  I really thought she’d always do those things and even wind up trying new things as life went on.  But now… she hardly does anything honestly.  She looks tired all the time, she looks way older (even though it really hasn’t been that long)… and she’s completely out of shape.  She gets completely drained from the most basic activities and complains about stupid things like the heat outside on the way to the car, then winds up frustrated because the a/c bothers her once she’s inside again.  It’s kind of ridiculous.  If she sits down for like 30 minutes or so, she acts like she has trouble standing up and walking after that (you’d think she was in her 70s), and by the end of the day she seems like she really can’t walk well or stand at all without some kind of support.

Things were so different before.  She used to care about her appearance.  She would take time for herself, you know… she spend time doing the things that make a girl feel pretty.  It’s all so different now.  I mean, she was never the type whose favorite pastime was spending hours at the mall, but she at least used to care about looking nice.  At this point the only time she buys clothes or makeup, (or even just takes time to shave her legs) is when she absolutely has to.  It’s all just a chore now, and there’s just no room in her life anymore for that kind of thing.

I just get completely frustrated with her.  She knows that she should do certain things… like exercise, stop binging on junk or alcohol when she doesn’t feel well, or just go to the doctor for God’s sake, but she can’t even bring herself to pick up the phone to set the appointment.  She just sleeps, then works, then sleeps again, it’s like she doesn’t really connect to anything else anymore.  I don’t know… I guess she’s at least made some progress.  She’s been going to counseling for a little while now, and I know she’s at least trying to become more aware of doing basic things like drinking water, and stopping to eat during the day.

I wonder what her husband thinks though.  It has all got be pretty disappointing to him.  To think you are marrying one person, and years later wake up next to a completely different person.  They got married so young, so things went from this young woman who was ambitious and energetic, to *this*??  I honestly don’t even know how he can look at her sometimes.  It’s just sad.

Before all of this, she was way more involved with things around the house.  She did most of the cleaning, made grocery trips, cooked, and spent so much time with the kids.  Now she’s pretty much come to expect everyone else to handle the things around the house and really doesn’t even have the stamina to send the girls off to bed at night because if they have questions, need help with anything, or put up any kind of fight about bed time, she gets irritable and winds up not being able to handle it.

The sad part is, I kind of feel like things are just declining.  Lately it seems like it’s becoming harder and harder for her to do things for herself.  Her hands are curled up into an odd shape most of the time, like she has to force them to do their job, and she suddenly has to ask for help to do simple things, and I know that has got to be humiliating.  I’ve actually seen her give up and put things back away versus ask for help again with something that she *should* be able to do, and I don’t blame her.  I honestly wonder how much longer she’ll be able to drive, or to do her job.  It kind of seems like it won’t be long until she can’t handle these things either and winds up spending all of her time in bed.  What will happen to her marriage and relationships then?  Not that she really has many relationships anymore…

She’s got to be lonely.  She’s a completely different person than she used to be.  She doesn’t talk on the phone or go out with friends.  Well, she honestly doesn’t reach out to anyone or anything beyond work or family.  I think she’s embarrassed of how out of control her mind and body are… and it’s frustrating to try to have conversations with people who knew her then and be compared to who she used to be.  There’s no comparison.   I mean, people understand change to some degree, but this is not just the normal kind of change that comes with time and life… she’s a completely different person than who she used to be.  And if you can’t articulate things, if you can’t keep up… how can you really have friendships anyway?  Aren’t friendships built by spending time together, talking on the phone, going out, etc?  She can’t really handle those things at all, and when tries to, she’s winds up being so distracted because of being in pain that I’m not even sure she’s really connected to what’s going on.  I’m pretty sure she’s in her own world.  Like she’s watching and listening to life from another dimension.  It even seems like any little thing, even just a 10 minute phone conversation, or trying to go out to dinner,  is so draining to her that if she even actually gets herself to do these things, she winds up stuck in bed saying she’s exhausted all day the next day (or possibly several days).  I don’t know how she can live like that.

It’s like her life is just passing her by.  There are seasons these last few years to where she has actually spent weeks at a time in bed, never leaving the house, needing help with every little thing, and she doesn’t even get up to take a shower.  It’s like she’s just ok with missing out on her life, like she’s not even going to try anymore.  Her kids are growing.  They have grown, so much.  Kids can change so much in 7 years, and she’s missed so much of it just spending her time sleeping and working.  I don’t know how someone can live like that.  I don’t know how she stays motivated, or how she can really be happy like this.

I know I shouldn’t treat her so poorly.  I want to be proud of her… I want to love her for who she is now.

I try not to hate her.  But I do.  I really do very often hate her.


A Few Minutes of Being Me

Ok, this is probably going to be one of the most honest blogs I have written about the details of my health and all that comes with it.  But, my commitment to myself and the readers of this blog is to be transparent so that I can use this illness for good, and so that I can have a connection with others that are experiencing the same or similar things…honest is good.   When you begin to suffer with symptoms that are not mainstream or that you can’t find answers for, you begin to question your own mind and can often feel self conscious and even embarrassed of sharing with others what you are feeling.  There will be people that think I am wallowing in self pity by expressing what I am feeling, there are those that think I have an overactive imagination, and of course there are PLENTY of obvious antidotes that can just roll right off of your tongue when it comes to things that you haven’t personally experienced.

I am so very aware of how easy it appears from the outside.   If you are reading this, and you are healthy & well, please keep in mind, I WAS you.   I can compare my life before being sick to my life now, and I am the same ambitious, intelligent, and passionate person that I was before.  You see, I’m just stuck inside of a body that is really pissed off about being here, and is not capable of handling things well.  I do not make things up for attention, believe me, I have better things to do and would rather spend my time on those things.  I did not get here by having a degradation of my emotional state of being that in turn led to me being physically ill (though, if any of you are dealing with that, I know that this is very possible, and that psychological illness and emotional disorders have the same stigmas attached that chronic ones do, so I respect the gravity of your symptoms and struggles as well).  Am I depressed??  Do I get discouraged, and lose hope sometimes?   Well, hell yes I do!!  ANYONE would if they were in a state of physical distress for years on end, it’s not a picnic kids.

I just fucking got sick.  That’s it.  My systems have gone a bit haywire and I am on a journey to find REAL answers about the cause and am not ok with a blowoff umbrella diagnosis that in its name basically translates to: “We don’t understand it, millions of people have it, and we don’t know how to help you, but… maybe you should try these new meds just in case.”  There is a cause, there is something wrong, and I’m going to persist on my quest to make it right because I have a life to live.  You can preach on having a good attitude, but really, can you tell me where that measuring stick is?  What are the qualifications for having a good attitude?  I’m not exactly sure, but I think considering the day to day situation here, I have a pretty damn good attitude by even attempting to have a life in the middle of this.  And not to toot my own horn here, but I do more than just “attempt” to have a life.  I apologize if this all sounds bitter or snide, but geez louise!!  If you have *ever* been in a minority, you quickly recognize that ignorance breeds speculation, speculation breeds superiority, which in turn breeds pride, which then breeds a lot of loose lips, resulting in an entire classification of people that are rejected, isolated, and made to feel as if they are lesser beings simply because the people in their lives don’t have the time to educate themselves or to truly listen without passing judgment.  Well folks, I’m in the minority, and it just sucks sometimes to be made to feel like less of a human being because of that.  Phew.  I’m a little fired up (Earlier I said “most honest” blog, but it’s just possible that I should have said “most profane”, sorry bout that). 🙂

Back to my blog that I originally intended on writing before I went on the above rant.  I’m going to give you about TWO minutes of being me.  I say TWO minutes because beyond that, you would seriously get bored, and I will let you just stretch your imagination to putting this track on repeat for 5 years at *this* level, and about  4 years before that of dealing with symptoms like these on a smaller scale/individually.  I have a handful of chronically ill friends that follow this blog, and whose blogs I follow, that could fill in their own version of this for you,  and MILLIONS more that are in the same situation and don’t have the support or emotional strength to keep fighting.

Starting the clock now:

My eyes are so sore that I literally feel pain every time I look a different direction.  They are heavy, and puffy, and blurry, as if I haven’t slept at all in a few days, though that’s not the case.  From my fingertips up to my shoulders, continuing that from my neck down to the bottom of my feet, I have a painful burning sensation that makes me feel like if it gets any worse, I can seriously not take it.  Nauseating kind of pain.  I use a pain scale to describe fatigue and pain to my doctors and my family/very close friends, and on a scale of 1-10 with pain, I’m sitting at about a 7 or 8, which is not a place that I am at often, but during a flare up like right now, it can go like this for days or weeks.  My right hand that I am typing with is tingling as if it’s asleep and is stiff and painful to type.   A finger on my left hand is completely numb, other than that great tingling sensation along with the numbness.  On the right side of my head, I have this fantastic neurological issue of constant pressure and pain that started a year ago, it used to come and go and now it is with me all the time.  At this moment, I would compare it to what I used to call a “bad headache”, but add to that some strange cold and dripping sensations.

 Ok that was two minutes. 

I have been in that specific state above without relief for about a week and a half now, and if you want to visit me on another part of the day, you might find a combination of these things along with daily fever, muscles jerking/tremors to the point that I couldn’t sit still if I tried, me forgetting the names of the important people in my life, or everyday objects, spending hours on end in the bathroom with cramping & upset stomachs, constant muscle spasms & twitching, me having to call someone because I am not capable of driving because I can’t stay awake, or employing my oldest child to care for her sister because I can’t get down the stairs, etc, etc, just to name a few.   Seriously, this is the general, every day experience.

When you see me, and I look “fine”, to you, please know that for me to get a shower, get ready, and get out of the house, will very possibly be all that I am able to do that day, and if I am going beyond that, know that I am purposely choosing to place value on what I am doing with full knowledge that I will be set back for days or weeks because of that choice.  The thing is, when I don’t *look* fine… you won’t see me, because if I can’t pull it off, I usually stay in and delegate what HAS to be done, & cancel what is optional.  Chances are, if I have something to communicate to you, I will text it or email it, because if you spoke to me, I would have to spend the energy explaining why I sound so bad, and that is energy I honestly don’t have.  Oh, and my Facebook…it’s especially active and lively when I’m stuck in bed, because I get bored!!  I am an intelligent person, and even though I get physically stuck, I still want to be “social”, connect with people, and share my thoughts, and I would say I could count on my fingers how many people in that world know that I am sick, and I keep it that way intentionally.

I assure you that I have been to doctors and that I have been diagnosed and that my symptoms have been explained by their diagnoses.  I spent about 8 years running tests to finally be told that the things that I am dealing with are Chronic, which means they will not ever go away.  I spent about four years after that trying various medications that can “sometimes relieve the symptoms in some patients that deal with this type of illness”, and realized that because of the drugged feeling, and the myriad of side effects, as well as potential long term effects, that this was not my path of choice for the current season.  I want to do more than identify or label the illness, I want to understand the underlying cause, and give my body the tools to function as it should.  For me that that led to the choice of going a holistic route, and styaing open to medication that can be used to treat or heal  vs just mask symptoms.   I would never have been open to this before, and I honestly don’t think I would ever have felt that there were any holes in mainstream medicine had I just been dealing with typical sickness that is easily recognized and commonly treated with medication.   After spending the last few years studying and researching my options, this is what I feel is the best choice for me.   I have no qualms with someone choosing another route, as I believe that in order to deal with chronic illness in a healthy way, you have to make it your own journey and evaluate what choices are best for you.

I have wanted to write more specifically about what I have tried, what has worked, what hasn’t, etc, however, I just haven’t gotten there yet.  The holistic route is a bit more expensive for me because my doctor is out of network, and he also recommends supplements/vitamins for deficiencies, which are not typically available by prescription.  In addition to the fact that I am trying to lead a life in the middle of this madness, it is terribly hard to drag myself to the doctor when half of the time I can’t drag myself to the shower.  This makes things move very slow, which I have had a lot of people in my life question because they feel that I am not being assertive or aggressive enough.  All of the appointments and tests that I have had run are being paid out of pocket, which means that we have had to slowly take time to pay for these, and then of course any treatment options following the tests are also costly & draining.  I can get reimbursed for some of these things from my insurance, but I am slow about it all because of having so many other priorities but limited energy.

The next step for me is a Lyme test, which is actually the primary reason that I came to my particular doctor in the first place.  After reading and researching Lyme, I found that I have such an identical pathology to Lyme patients, though it can often be hard to identify because it mimics symptoms of other diseases/conditions.  If you haven’t seen the documentary called “Under Your Skin” (you can find this on Netflix), I would highly recommend it, as it is very educational on this subject.  I actually cried most of the way through the movie, because it was like watching my life on video.  Whether it is Lyme or not, what I deal with is very similar to that of Lyme patients, so I need to at least cross this test off of my list.  I will keep you posted on the results, and what’s next.  Gotta put my pride away, and the feelings of embarrassment, or that I’m crazy, etc, in hopes that this will help some of you out there.   It saddens me that there are so many people out there dealing with us, but the fact that we are not alone is also encouraging.  By sharing who I am, I risk being judged by others, but I’m pretty sure at this point that being judged in life is a guarantee and can no longer even be categorized as a risk… so what’s the point of hiding??  If I do that, I won’t help anyone, and that is a risk that frightens me substantially more than anyone’s judgment.

Reblog: The Fibromyalgia in my life

Another great Reblog for ya.  Be sure to click the link to see the entire post.  I am overwhelmed how absolutely similar Trisha’s description here is to my own journey. This stuff ain’t for sissies. 🙂 Thank you Trisha, for putting this into words. Well done, and I hope that you are feeling well today.

Yup, it sucks.

I get that I need to stay positive.  I do get that.  I get that our mind and our attitudes are so powerful, and that we can go so much further than our perceived limitations when we use these tools to our advantage.  I know this.  That being said, I can tell you that today I made a wish.  I wished with all of the passion that I could muster within myself that I wouldn’t have to be creative about how to accomplish the things that I needed to accomplish today.  I wished that I could just get up and do them.  Every day I bait myself with various promises to keep motivated throughout the day, and honestly sometimes I get tired of being determined and putting “mind over matter”, and I just want it to be easy.  We all have obstacles, and I know that many people have more challenges to deal with than I do, but every once in a while, I just wish that I could wake up and have a day off from being sick.  OK or maybe a week off.  I think that just a brief taste of feeling energetic and casting off this fog in my head and putting a stop to this stupid, nagging, aching would be so refreshing.  I wonder what I would do.  I wonder what that would be like.  I’m pretty sure I would feel like superwoman, ready to take on the world!

I definitely lectured myself on why I needed to stop feeling sorry for myself and stop being so negative and really fought with myself to drop this “life is so unfair to me” mentality.   But you know what?  Life is truly hard sometimes, and we do need to make sure that we don’t dwell in the valleys, but is it possible that there is something to acknowledging that they exist?  I think it might even be healthy to give yourself permission to just call it like it is, and say those charmingly impolite and crude, yet perfectly accurate words, THIS SUCKS.  Yup, it does, it totally sucks, and now I move on to focusing my energies on gratitude and finding a place to renew my strength and get back to living my life.

I hope that life is absolutely wonderful to you today my friends, but in the case that it is not, I am very happy to stand with you and point at whatever evil thing is getting you down and very maturely call it names and make sure that it knows that we both agree that it sucks.  With one last stomp of our foot as we move on, maybe we will at least get the slightest bit of satisfaction from our outburst. 🙂


The Blob

So, I am such a big believer in facing and working through things in my life in a healthy way, at least to the best of my abilities and awareness.  A part of this comes from seeing the damage that can be done in the lives of our loved ones when we refuse to ask for help or seek out means of self improvement.  It is my goal to be in constant motion as a person.  By this, I don’t mean running around and over committing myself, but rather in this kind of internal motion, where I am working to grow, learn, and build upon my experiences versus allowing myself to sit still where it is comfortable and familiar.  So here I am, again, stumbling upon completely new territory that is terrifying for me to face and acknowledge, and consciously choosing whether to work through it, or package it back up in whatever box it was hiding in so neatly within me before I became aware.  It is sincerely a conscious choice that I am making, and I know what is “best” for me, but the feeling that you get when you start to contemplate facing traumatic events or difficult experiences, is a lot like the feeling of free falling.  And, as much as I would like to think of myself as a thrill seeker…the truth is…I prefer both of my feet to be planted on the ground.

So here I am.  I am standing on the last little bit of crumbling ground on the edge of this cliff.  Every time I even step into the general vicinity I become overwhelmed with emotion and panic, so instead I have been pacing here, back and forth.  I walk far enough away to feel that I have control, and then slowly look back the direction of where I know I need to go.  What I am beginning to see very clearly is that the more that I do this back and forth game, the more exhausted that I feel, and I really don’t think I am ever going to feel absolutely enthusiastic or excited at the thought of jumping off of the edge.

I am remembering about 5 years ago that I attended a youth camp as a group leader to about ten 10th grade girls.  Throughout the camp we spent our time hiking, climbing rock walls, rappelling down the sides of cliffs, zip lining at incredible heights, and pushing ourselves physically through fears and working to build confidence in the lives of these young ladies in the power that they have to move beyond that place when fear kicks in.  Well, I should re-write that last sentence…what I should have said is: I spent my time watching these amazing young ladies, who were completely terrified, sometimes even physically shaking and breaking down to tears, pushing themselves through those fears and accomplishing what they never imagined that they would ever do.  I watched.  I encouraged.  I observed.  And I remembered how I used to have a desire to do these things.  And I laughed internally about how I didn’t even have a single ounce of desire for these activities anymore. 🙂

Finally, after completely avoiding every single activity that we faced each day, and managing to successfully find reasons for doing so, we came upon one last challenge.  It was called “The Blob”.  Doesn’t sound so intimidating huh?  “The Blob” was a blow up type mat that was sitting in water, which the kids could jump onto from above.  Way above.  Way, way, way, freaking above!!  As I considered this activity, I thought, “Hey that really doesn’t seem so bad.  I can do this one!!”  So, I proudly walked out onto the wooden deck that was several stories above “the blob”.  I yelled out to all of my kids, and asked them to cheer for me.  I was feeling pretty good as they were yelling my name, and giggling with excitement that THEIR counselor was actually going to get involved and participate.  Why I needed to make sure to have everyone’s attention, I still have no idea, but I did, and there I was.  So I thought that I would get a little bit of a running start and get this out of the way.  I ran all the way to the edge, and then suddenly I felt very much like my entire body was being physically restrained and I could not move.  But see, had that been the case that would have been a good excuse for why I was just standing completely frozen on the edge.  But that was very much not the case.  It felt so so completely unnatural for me to throw myself off of the edge of this platform, that I could not get my mind to let go and release my body into this motion!!  I cannot tell you how long I stood there (that might very well be embarrassing).  I counted off in my head several times, and nothing.  I told my feet to jump, but they were very happy feeling the platform beneath them, and my mind was pretty convinced that this was just not what I meant for my body to be doing!  After a while of this “Ok, jump on the count of three” dialogue that I was having in my head, I finally even considered having someone push me off!  No one was nearby, and the thought was ridiculous really, and finally…finally…I um “jumped”.  I am using the quotations here on the word “jumped”, because I want you to understand that in all of my past usage and knowledge of the word jump, the motion that I was in at that time, would not really have qualified as a jump.  But somehow, I was in the air, and I quickly found myself hitting “the blob” with a thud.

I really wish I could say that I was thankful that I made the decision to “throw” myself in the air that day.  I really wish that I could tell you that it was so exhilarating that I ran back up the ladder of the platform and did it again and again.  The truth is that this was nowhere close to what I was feeling.   Come to find out, the lovely people facilitating the camp had over-filled “the blob”, and when I landed what was supposed to be a rather cushioned impact, well to my surprise…it was not cushioned.  At all.  I felt pretty much like I landed on a similar surface as what I jumped off of.  Aaaaand, well… you see… I, um, got whiplash, and it turned out that I had to try to hide a limp for the remaining days of the camp…fun stuff (have I mentioned that I have a chronic illness and usually wake up sore from head to toe on a typical day??).  J  But, hey, I jumped (ehr, well, let’s say “flung myself”??) off of that platform that day, damnit, and it was for a good cause.  Not only was it to give the kiddos in my group a little motivation, but of course, it was probably pretty important for me to leave that camp having proven to myself that I can also push myself further than where I believe my limitations to be.

So often when we find analogies about reaching goals in life, overcoming obstacles, and taking risks, the point of the anecdote is usually that we waste way too much time being apprehensive about taking the plunge, and that what we find on the other side of that cliff turns out to be immediately rewarding and fulfilling, and there was nothing to be afraid of after all.  Well, sometimes that is the case.  But the reality is that a lot of times, there is very often a “blob” on the other side, over-filled, and waiting to “embrace” you like a soft hug from a concrete slab, and that’s gonna sting a bit.  Maybe even leave you feeling sore for a good while.  But here is what I am learning lately.  In that moment before I face something, whether it is something huge and life altering, or as simple as making a phone call to a client that I am dreading, fear does not mean stop.  Fear does not mean I am going the wrong direction, even if what I am about to face is the most difficult challenge that I have yet encountered.  Fear simply means that I am human, I am scared, and I am on unfamiliar territory.  But the message I am really trying to have sink into my spirit is that even when I am afraid.  I am still ok.  I am ok.  I will overcome.  I will survive.  I will learn, I will grow, even if there is pain in the process.  I AM OK.

So let’s do this.  I honestly have no idea what is on the other side of this cliff.  I may jump off to find that there is about a 6 inch drop below and my feet land comfortably underneath me, and all of the anticipation was unnecessary.  Or, I may very well  begin a free fall (for what feels like an eternity!!!), and come to an abrupt jolt when I hit “the blob” below.  But I am gonna get through this, and I am going to be thankful that I faced whatever it is over there that I am avoiding, because I am going to get up again, limp and all, and I am going to be more knowledgeable, more aware, and stronger than I was before I made that choice to “fling” myself over the edge.

What are you avoiding today?  A ledge is not a place to build a home.  Even if you try to hang pictures on the wall, or throw up lovely floral curtains…it is still a ledge, and it can be the end of your growth and the ceiling for your future progress, or, it could be what launches you into something unknown, something you never thought you were capable of or that you could handle.  I personally am gonna close my eyes and, um, “fling” myself.  Wanna hold my hand?  At least if we do this together we can laugh about it all later, once I get done crying about my whiplash that is.

Here goes…

I think…


Alone in My Principles… ;)

There is this scene in the movie “That Thing You Do”, that I often think of when I sit down to blog.  There is a little confrontation taking place between the lead singer and the bass player in a band and in the middle of the argument the singer exclaims “well I guess I am alone in my principles” and leaves the room.  The bass player then quips “Oh, there he goes off to his room to write that next hit song “Alone in my Principles.”  Though it’s not usually social confrontation that gets me to this place, but more an internal debate, I often hear this quote in my head when I isolate myself and start to spill everything on the page, kinda makes me laugh at myself a bit.  Which is good… sometimes it gets too serious in this over analytical mind of mine.  It seems it is in my darkest times, my moodiest times that I turn to my blog as a place to express myself.  When it comes to feeling well and loving life, I am more of a “doer” than a writer I guess…

It seems I’ve had to call a “T” recently.  Had to have the dreaded conversation that any type A personality can creatively procrastinate for the longest amounts of time.  Yup.  You guessed it.  I had to ask for help.


I hate this moment.  This moment when after having a season of going strong, feeling productive, embracing “normal”, that I have to see, speak, and acknowledge the three words I avoid.  I am sick.  Ugh.  Just writing that causes a deep sense of disappointment to form in the pit of my stomach.   It’s not that I forgot, or that I would give anyone else any shame for saying those words…I just want so desperately to “overcome” this.  Like, it’s and obstacle that I need to surmount, overtake, and check off of my ever growing to-do list.  And sometimes… just to give myself this little pat on the back, I pretend that I’ve done so.  Sometimes I can pretend for an hour, sometimes for a week, and sometimes I have pretended for months on end.  But when it comes down to it I AM sick, and it shouldn’t be something I take as failure.  I know this, but of course there is a big difference between knowing something intellectually, and accepting it emotionally.  You would think after almost 5 years of dealing with physical limitations of this nature that I would be an old pro!  But the back and forth, the up and down…it never truly becomes normal, maybe just a bit more familiar.

After the initial fight with the facts (I’ve been pushing too hard, not taking care of myself, avoiding the dr…etc), I have begun to see these times as an opportunity to not only rest and restore myself physically, but also to indulge a bit artistically, maybe do a little spiritual seeking, a little mental/emotional health inventory.  I want to use this.  I am NOT down and out.  I may be physically stuck in bed, but my mind, my emotions, my relationships, and my creative energies are going to be stimulated and stretched, and I’m going to keep growing damn it.  And when that moment comes (that is also a pretty tough moment for me to accept), that I start to admit that I am strong enough to take on a little more and more physically… I’m going bring this new strength with me.  We are more than just physical beings after all, and I have too much to do in my life to waste any time waiting on the sidelines.


My 5 minute Tantrum

Sometimes you just have to take a few minutes to pout.  I’m pouting publicly today.  Sorry about that… This is my 5 minute tantrum.


The ups and downs and complete unpredictability of living with this illness is so so frustrating.  Sometimes I lay in bed at night and just dread the next day because of feeling afraid of the very real possibility that I will have to cancel everything that I have planned, call in help with the kids, and stay in bed.  It is very tough to stay balanced, positive, and embrace momentum when you have this potential looming of everything changing so quickly.  I do know that we all have unpredictability in our lives, this is just so consistently inconsistent that it is hard not to live in fear.

I have not said this to anyone other than my husband but this lifestyle has triggered quite a few phobias for me.  I have to fight with them/against them every day throughout the day.  I have phobias of making commitments because of knowing that I may have to back out on a moment’s notice.  I have phobias of talking on the phone and scheduling meetings because they tend to take so much energy and I very often only make it through the beginning portion of this kind of communication before my fatigue kicks in so heavily that putting words together becomes very challenging.  I have phobias of any sort of conflict.  I’m sure some of those phobias were there before I got sick, but now things as simple as exchanging or returning something at the store can become something that I put off for months because I am afraid I won’t have the energy to get through the line and still deal with the situation at hand.  Of course this translates over to personal conflict as well…  Also any medical appointments for me or the kiddos has become something that I avoid and put off for the same reasons.  The drive there, the paperwork, the wait, and then possibly the experience of coaching the kids through the experience is so intimidating that I feel very afraid of having to back out before I even get there.   I push myself to face these things each day on some level.  I have not truly allowed them to take over, but it is as if I am constantly in very uncomfortable territory… which I guess is not necessarily a bad thing, but is pretty exhausting.

I get resentful of the fact that I have to spend a good part of the day resting.  I want a “normal” schedule!!  I often take personal responsibility for the limitations that I have and feel like I am failing a fight when I have to lay low.  Today I tried to get up early and just push through, instead of resting as I normally would, and wound up physically sick and throwing up because I was too tired.  So back to bed for a few hours…I know on an intellectual level that I cannot control these things and just “discipline” myself through them, but on an emotional level I struggle every day to keep a positive attitude and not feel angry with myself for “giving in” to these limitations.  I hurt from head to toe today.  On a scale of 1-10 my pain is about at 6 or 7.  I know it will pass.  I know better days will come or that it may even all disappear this afternoon, but I just needed to take a few minutes to say that it sucks, I hate dealing with this, and I want it to change!

Alrighty.  This was my 5 minute tantrum, and I am moving on with my day.  Gonna be a good day.

I think I can, I think I can… 😉

A False Finish Line

Some thoughts that have been mulling around in my head today when my

body is telling me that I am done. Thought someone out there may need to hear


If I would have stopped the first time that I thought that there was no more

positive in life ahead for me, my life would have been over at seventeen. When

running a race you know of “false starts”, but in life it seems you have to watch

out for “false finish lines”. Want to know if there is something better ahead for

you? Check your pulse. If you have one, there is something good coming. So

don’t you dare quit yet.

Been just a little behind on the blog wagon…

So, it’s been way too long since I have updated my blog, and of course there is so much that I know I could & should be sharing.  Because time is short today, (and to step away from my all or nothing tendencies of setting aside mondo amounts of time to write or not feeling like it’s “enough”) I thought I would just share a quote that I came across that I thought some of you might be encouraged by.

The quote is by Mahatma Gandhi, and it says: “Strength does not come from physical capacity. It comes from an indomitable will.”

So those of you out there who are struggling today with a lack of physical stamina, keep this quote in front of you and dig your heels in a little bit deeper.  Not physically, but with a determined inner dedication to continue on, to strive to reach your goals, to learn to USE your weaknesses as strengths, to take care of your health, and to know that the fact that you are weak physically on this day has zero reflection on your true strength.  Keep on keepin on!

The Reality of Limitations

    We often preach on perseverance, attitude, and various methods of dealing with life’s problems & hardships almost flippantly… arrogantly…as if difficulties don’t really live up to their name.  We feel confident, solid, secure in the thought that we are “equipped”, and possibly even that if we were faced with someone else’s trial that we would be more capable and handle it with grace.  However, the nitty gritty part about limitations is that when you sincerely find yourself faced with one, you understand that they are a force to be reckoned with.   The pain, resistance and the emotional exhaustion that exists when a limitation is present is real, is uncomfortable, and is cause for pause, evaluation, grief, and acceptance.  The simplistic solutions and clichés that were previously touted, once in application begin to pale in comparison to the reality of the situation at hand.  The realization comes that I may not be able to pray them away, wish them away, or will them away. In spite of this, I still believe wholeheartedly that limitations & obstacles are meant to be defied (though I have learned not denied).  The friction that forms as a result of this defiance seems much like rubbing two sticks together to start a fire.  Out of continuous pursuit & steady endurance erupts creativity, innovation, and in turn becomes this incredible strength that extends your reach and tightens your grasp beyond what it ever could have been.  A life free of limitations, trials, and difficulties is not a formula for success, often times quite the opposite.  And though life is good, it is rich, it is fulfilling, it has not been issued to us under the guise of paradise.  The ugly parts exist.  They create pain beyond the boundary that we thought was our threshold, and entirely beyond our understanding or comprehension. USE THEM as a tool for growth.  Shape them into something that they were not originally intended to be.  Do not be defeated by them.  Fight them, and yes, never tire to search for solutions, but do not cower to them.  Don’t let the experience be wasted.  Where from a distance you may see a victim or someone who is weak…I might recommend taking a few steps back.  With these limitations, I’m gonna start a fire, & I have a feeling I’m not alone.