Just call me Jiji

…me, just pretending to be me ….now, where did I put that cape??

Archive for the tag “Fibromyalgia”

Crap! I think I’m broken again

Well, it is that time of year again, I guess…

I’m screwing  up again and I just don’t have time for it. I want this new year to be a year of change for the better!! So I have a plan to implement.

Being that I just spent about 15 minutes in the arms of  Kiera, my almost 4-year-old  niece, crying as she stroked my hair and wiped away my tears. I’d say I’m not getting off to the best of starts.

Then again, if I am going to have a nervous break down, there is no better person to be around than a little angel. And she is an Angel. (it’s a plus when that little angel doesn’t get a scare when seeing her Tante  Jiji fall to pieces.)

I haven’t been sleeping regularly. My nights are getting  later and later (or earlier and earlier, depending on how you look at it). In the last week I’ve gotten to bed at 4:30am, 4am, 2-ish …I think (I was proud of myself  for that one, after all I managed to get to bed early that night.) Then it was 4am again, and 5:30am and last night/this morning I went to bed at 6:30am. It’s not healthy, I know. What I don’t know is why I am like this.

It’s as if my life runs on a different clock than everyone else’s, everything is backwards. My days, find me excessively tired and exhausted, and my body seems to work against me. I hurt physically, which  for the most part I am used to being a problem. My fibro flares are definitely worsening with each new episode as time goes on. I don’t know if it’s an age thing or a female thing or just the normal course fibro takes. Personally I am convinced that I have MS, but no one else is. So I guess I must be wrong.

Mentally I feel so freaking scattered, confused, and somewhat lost. My memory is getting so bad; …scary bad, like I am going nuts, bad. I can’t seem to string my thoughts together, let alone complete a normal sentence or have a clear conversation with someone. Even writing this right now has been difficult, it’s taken me over an hour to get this far. my thoughts and emotions are all over the place, They all want to come out but some how they are all scrambled and tangled and stuck in my brain and driving me mad. My words have been coming out of my mouth all wrong, I want to say one thing but something else completely unrelated comes out. It’s called something, when that happens, but I cant remember what it is right now (HA!, go figure)

 –Google Search– Aphasia! that’s the word, Aphasia. Do I have aphasia? Hell if I know. I am not sure of what it is exactly I haven’t really researched it. And it’s probably best if I don’t…. 😉

During the day I feel as if I am just getting through it, one wobbly step at a time. I occasionally have spurts of ambitious thoughts of productivity, but they  seem to get squashed once I try to do something about it. I get too physically tired, too easily and abandon whatever it is I am trying to accomplish. Nothing ever gets done… , not completely anyway.

One of my changes for a better new year includes changing my sleeping habits for a happier healthier me. So the plan is to get to sleep before midnight and not staying up all night long. It sounds easy right? But it is not!! And like I said I really just don’t know why I am not sleeping?

I don’t know why my brain feels all foggy and dull and dimwitted and sleepy all day. And I don’t know why it starts itself up and runs at full throttle at night. It’s as if the dimmer control on the light bulb in my head gets turned all the way down during the day and then gets turned all the way up late at night. It’s as if, my brain is at its most active and productive stages in the evenings. Seriously I feel like I am at my widest awake at night when everyone else is going to bed. AND sometimes I actually end up getting things done. Whether it be doing some writing, organizing files on the computer and backing them up, archiving my photography, and readying them for display, researching my medical and neurological problems, researching ADHD, etc, etc, etc. I am actually doing these things well into the morning. But that’s not to say that I don’t goof off at other times too. There ARE nights that I will promise myself that when Ron heads to bed I will follow, but then when he heads to bed, I just can’t, I don’t feel tired and I know I won’t be able to sleep. So I inevitably  decide to watch just one more show. If I am not feelin’ what’s on the DVR, I will find something on Instant Netflix that I am interested in watching. I if it’s a movie, I may get to bed as early as 2:30 or 3am; but if I land on a new TV series that I want to begin watching I may get so caught up in the cliff hangers, and poor me without an ounce of will-power, will end up having to watch the next episode ..and the next one …and the next one …and so on, and so on, and so on. That’s kind of how I ended up being up till 6:30am this morning (by the way “United States of Tara” – excellent show!!). I do want to add that my lack of will power wasn’t the only reason I was up so late last night. I just COULD NOT sleep. Even at 6:30am – I got into bed, and I just laid there and laid there. And I felt like I was exploding on the inside. All I wanted to do was GO TO SLEEP. The voice in my head would just scream “Sleep already, SLEEP!!!” But I couldn’t and I was just so frustrated and angry; really angry. It was freakin’ 6:30am and I just could NOT sleep.

…….eventually,  I did doze off and slept in until 10am.

So here I am now with only a few hours of sleep, and I am a total mess. The tears just keep rolling and they are not stopping!!! I just want to make them stop! They are giving me a headache that just gets worse and worse with every tear shed. Everything is making me cry. Everything and nothing. To top it off , I’ve got the crazies; my skin is crawling and I just want to rip it off, I am jittery and nauseous and dizzy. I keep pulling at my clothes and my hair, I can’t sit still, I keep jumping up to look for something, but I don’t know what I am looking for, so I sit and I cry while I write, then I get up again and I pace, and then I do it all over again. I am just so tired.

Right now I could sleep, right now in the light of day I could just sleep.  But I REFUSE!! I can’t! I won’t!! I am fighting it. My lids are heavy and they want to close, but if I let myself, how will I ever get back to a normal sleep schedule.

I have been puposely depriving myself  and withholding my naps. That is my strategy for turning  my clock back to the right time zone. And that is a biggie for me. I LOVE my naps. I NEED my naps!! Really I do, especially given my complications with Fibro and the excess tiredness and fatigue I am constantly suffering  from. Naps are a natural and necessary part of my ordinary day, even when I am on a more realistic sleep schedule. But for the last week I’ve held back on the mid day naps so my sleep schedule can match the rest of the world’s. So here I am with a bad case of the crazies; and the tears just keep falling.

Yup, I am broken all right!

Please don’t ask me why or what’s wrong. I don’t know the answer to that and it will only make me cry more. That’s what was so great about having a little angel around. She stroked my hair and wiped my tears and said ” It’s okay Jiji; it will all be okay”, ” I will stay with you and hold your hand and I will be your friend”, “And then Uncle Ron will come home and hold your hand, and he will be your friend too.”  

…Okay, okay, so that did make me blubber all over the place too! But those were good tears. Unfortunately my Angel was picked up early today and I am left here to go cuckoo all on my own. It’s probably for the best though. I am arranging for Leon to be on a playdate right after school too!

ARRRGGH! More tears ….and not so much, the good kind this time.

Where are these tears coming from? Like I said I don’t know exactly, but there are a whole slew of possibilities ..or even the combination of a few or all of them. Probably the later. Lemme see, I am sleep deprived; depressed; in physical pain; menstruating; I am self sabotaging myself; I have temporarily fallen off of my meds (and my rocker too it seems); I still feel over-whelmed by life – which is not part of my new year’s plan; I have too much to get started and I don’t know what comes first; I forget to eat until I remember and then I eat the worst stuff on earth (i.e.. A whole bag of chips for dinner) so I am probably malnourished; I can’t think straight; I have trouble staying awake during the day (even when I am on a good sleep schedule); and there has been such sad news going on all around me lately; and, and, and I am just broken, really, really broken.

An acquaintance’s husband died on Dec 23 with no warning, leaving a wife, a 7-year-old son and 3-year-old twins and barely any money to make ends meet. My close friends, Heather and Eddie are going through hell trying to get answers as to why their sweet little boy keeps ending up in the hospital, most recently being in the ICU throughout the Christmas/New Year’s holiday. My mom’s sister, my Tante Angela, died this past Monday. And just today I found out that a classmate’s, of Leon’s, mom died on New Years Eve. We had met while the boys were in pre-school, she was such a nice person and a great mom. I always have such a hard time hearing about young children losing a parent. So yes, life has been a bummer lately and the news has been really, really sad. And did I mention the whole I am menstruating and therefore I am more hormonal and cry-ee than my usual self thing?

So yeah, I think I am broken. It is definitely not the first time (and probably not my last). Today was just the day I SNAPPED!

…it has taken me all freakin’ day to write this; emotional outbursts in private and all; so I am taking my evening medication and some Tylenol PM and I am getting into bed now and I am going to pray for sleep, and a tear free day tomorrow. Good night.

Today was the day I snapped and tomorrow is the day I will begin again, to fix it.

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I think I may be part Hedgehog

I just figured out something new in the world of; whatever the
frak is wrong with me.

When I get agitated, frustrated, or upset my quills come out. At
least that’s what it feels like,

…only my quills aren’t fine little hairs that stand on end. My
quills are invisible and feel like really long sharp needles attached to nerve
endings that are slowly trying to make their way out from under my skin.

I know sounds horrible; imagine how it feels!

I’ve come to this conclusion based on the day’s activities and the
reaction it caused.

Hubby’s insurance plan is a real sucky one! We have a $2,400 detuctable
that we need to meet at the beginning of each year for our in-network service
plan. We are generally broke for the first 3 months of the year, because all
our money goes to the insurance company for all the meds Leon and I take on a
daily basis.

Well if that isn’t bad enough, our insurance plan demands another
$2,4oo for any Out-of-Network services. So why don’t we stay in network?
Because we can’t find a damn In-network doctor to see us. And by us I mean Leon
and I.

Leon needs a therapist, as well as a social skills group. I have
found two doctors that come very highly recommended, BUT… they are of course
Out-of-Network. Then there is me. Woe is me.

At my doctor visit yesterday with my primary care doctor, I was
advised to seek psychiatric care…. oh and here is a new prescription for even
more meds. In case anyone is keeping score that’s 10 pills a day. As my friend
Kim said “my mom doesn’t even take that many”

It’s frustrating; however, the advice isn’t wrong. I think getting
psychiatric help would be a plus, providing I can find one that I am
comfortable with. I think I definitely do need to speak with a therapist to
help me untangle this life that seems to have gotten completely out of control,
and if that person can also help me reduce the amount of medication I am taking
that would be excellent.

So today I printed out the list of in-network doctors that are in
a 10 mile radius. I was on a roll, and getting things done today. I was pretty
proud of myself for not putting it off. It was time to do some research, I hate
the idea of randomly picking out a doctor that is going to be picking my brain
and telling me who I am, from a list. I much prefer to have a recommendation
from a friend or a referral from a doctor. Unfortunately I am the only crazy
person among my friends so no help there, and as for doctor referrals… well
let’s just say that apparently none of the “good” doctors take my
insurance. So it was between me and the computer to decide who I would choose. Unfortunately
the computer was no help AT ALL! I was hoping to find some reviews on the
doctors on the list to help me choose. Ummmm, Yea, No!

As the time passed and I hit road block after road block I got
more and more frustrated. I called doc after doc after doc, and I was getting
nowhere. Some numbers on the list where wrong, some were fax machines, some had
terribly rude receptionists, one receptionist asked me why I needed to see the
doctor, and when I said, “depression…….and some issues with ADHD, I
guess”; her response was, “Oh, he doesn’t treat that”

What? What the what? Okeeeee…. moving on. One only specialized
in substance abuse, another in geriatrics (I was too young, go figure), one
doctor whom I was actually able to find a review on, now practices two states
over; and then there was the one with whom I spoke to directly, and it wasn’t
until I gave him every last detail about me that he realized I was calling
about his practice in the county that I live in rather than a neighboring one.
Unfortunately he isn’t seeing new patients in my county. I also skipped around
on the list, picking and choosing friendly names. Silly, I know but the names
were all I had to go on and well, I don’t know how to say this without sounding
a bit prejudice, which I am soooo not, so I’ll just say it very plainly as, I
prefer the doctor with whom I am going to spend a lot of time communicating
with, to have english as their first language. No disrespect intended but if I
can’t understand the accent how can they help me? So I skipped quite a few
names until they were all that was left.

Four hours later, I still haven’t found a doctor and I am hurting
and uncomfortable and realizing that these weird pins and needles/prickling
thing was getting worse the more I agonized over finding a damn doctor. And it
isn’t just pins and needles, its worse; it’s like a million needles trying to
escape my body all at once. In my arms, my hands, my cheeks, my lips, and on
the back of my neck.

So yeah I think I may be part hedgehog. Don’t they get all sharp
and prickly when they are agitated??

A Day in the Life of…FibroFlareGirl

AKA….. Test Results and Other Ramblings

Mmmmornin….

{Left the good in good morning out on purpose, btw}

4 pills with breakfast -YUMM

{sarcasm}

Wait a while to see if I am able to move more fluidly…

NOPE… Joints still poppin, can’t straighten up, numbness in hands and fingers, no strength in arms or legs.

{Crap! now how the hell am I going to get out of this couch?} 

Hmm Today is particularly bad

 {Again}

Okay bring on the Vicodine

 {Crap that’s 5 days in a row now – I must be flarin up again}

On with my day, cause life must go on….

{People to do and things to see and all that rot…} 

….feelin floaty and a bit dopey

{make that a LOT dopey} 

and some what embarrassed in public situations….

{ Is she talking to me?

 Wait what did she say? I spaced out for a sec,

 Was that question to me? Did I answer that already?

 Oh No am I repeating myself?

Oh No am I repeating myself?

Am I slurring out loud or is that just in my head? }

Made it through the day 🙂

{Barely}

Night comes – take 3 more pills at bed time.

{for those of you not keeping count thats 7 pills a day and then some as needed}

Good Night Moon.

{Good Night Bafoon}

Oh and by the way ALL my test results came back NORMAL!! Yay me!!!  ….There isn’t a thing wrong with me. Hoorah!

{ MORE sarcasm!} 

I Nominate; My Superman

I recently found this on  ellen ;

Nominate the Amazing Person in Your Life…

Do you know an amazing person who could use Ellen’s help? We want to hear about them! Tell us all about the most deserving person you know, and how Ellen can rock their world. Maybe it’s a family member or spouse who always puts your needs before their own, a neighbor who has changed your community for the better, or even a teacher who goes above and beyond with your kids. This season, Ellen’s gonna keep giving back!
Read more: http://ellen.warnerbros.com/show/respond/?PlugID=433#ixzz1RH3DUlaq

So I decided to nominate My Superman!

Dear Ellen,

I love you and I love your show. You and your show always make my day! You are just so genuine, with a hugely generous nature. You have a way of making people feel comfortable and at ease; like spending time with a really good friend.

Well good friend, I’d like to share something with you about my family, about my husband in particular.

His name is Ron, he is a handsome devil, a smooth talker with an odd sense of humor, a sci-fi geek, who rocks my world, and keeps things balanced in our lives. And he is the most giving and amazing man I know. He always puts the needs of our family before his own.  When I met Ron, he became the man who renewed my faith in hope. In short he is my Superhero.

My family consists of Ron (39), myself (42), and our son, Leon (8)

We have a good life, NOT an easy one, but a good one, because we have each other. Things have always been tough on us financially, and we always seem to muddle through whatever life throws at us, either on our own or with help from our extended family. And for this we have always been truly grateful.

We all do our best to make the most of our lives. But no one works harder than my husband to provide and take care of our little family. I try and do my best too, but I have so many limitations, that I fear he often gets the short end of the stick.

Both my son and I suffer from disabilities that require regular doctor visits and a lot of very expensive medication between the both of us. My son has severe ADHD/ODD and I suffer from Fibromyalgia. We have a HUGE deductible on our medical insurance and given our individual medical needs it is necessary for us to come up with a LARGE sum of money in a very small amount of time at the beginning of each year. He barely makes enough money that we can usually get by living paycheck to paycheck with just enough left over to cover and enjoy the little things like the movies or Cub Scout fees for our son.  But when the big bills come in, that’s when we really struggle.

This year, so far, has really tested Ron’s limits.  Ron’s car died, and while we managed to get by with only one car for a few months we did eventually have to buy a second used car, which is already in need of repair.

In addition to our financial stress, Ron has had to take on additional parenting duties, above and beyond all the amazing things he already does with and for our son, due to the decline in my health this year.

No matter what comes our way, Ron does everything he can to make things right again. He really is a good man, and he puts his all into everything he does. As a husband he is just amazing, not only does he work hard in the office every day, but he comes home to take care of a majority of the household duties, when I can’t, due to my disability; and he still makes time to be a Den Leader in Leon’s Cub Scout troop and spend quality time with him.

Lately though, it seems as if life has really been testing Ron’s limits. My husband’s normally optimistic outlook on life seems to be dimming. Right now, Ron feels as if we just can’t get a break and that everything is getting thrown at him all at once and he just can’t get ahead. Some days I look at him and he just looks so terribly defeated, like someone had just drained him of all his energy. It kills me to see him this way.

This is a man who truly deserves a break. Not only is he an amazing husband and father but he is also a genuinely GOOD MAN!

Ellen, PLEASE help me make my husband’s life just a little bit easier.

Here we are at his sister’s wedding, which also happens to be our wedding anniversary. (I am the one with the pink hair 🙂 )

Me and my Superman!

EDITTED ON Jan 19th 2012 to add:

Hey Ellen,

Being that this IS your birthday-month; I wanted to share with you that May is my husband’s birthday month. In fact, this year he turns 40 on May 13, 2012.

You know incase the SWAGGIN WAGON is in NY around that time???

That’s a hint…. you know incase you didn’t catch it.

Love ya Ellen!!

And my Superman!!!

Fibro? MS? Or Something Else?

I made a list of the symptoms that I have been having over the last 6 months to reference, at my doctor visits. Some of these are symptoms I’ve had forever (which I have always attributed to my previously diagnosed Fibromyalgia); some I have had several times before but I didn’t realize there was a connection; and some are entirely new to me.

Basically I just want to find out what the Hell is wrong with me? Is it still Fibro? Could it be MS? Or Something Else?

Something is definitely very very wrong. A whole new wrong. A different wrong

The fact is I’ve been experiencing pain since before Christmas 2010 from what I assume stems from a winter triggered flare. This is what my year has been like

  • Have had major bouts of fatigue, tiredness, and energy loss since winter began
  • Feel poorly 80-90% of the time with very little relief in between
  • Been bed ridden – spent all of Jan and Feb either in bed or on the couch – not a day goes by since that I don’t need to rest between activities
  • Can’t do my normal every day activities – include watching my niece –interfering with my ability to earn a little money and help my sister out
  • Had sinus infection turn bronchial in Feb.-mar –it lasted 7 to 8 week duration
  • Am non functional for better part of day due fatigue, pain, and weakness
  • Weakness to the point of can’t lift simple things like a drink, or stand for even short period of time
  • Difficulties standing up straight in the mornings or after sitting for too long
  • Constantly feeling stiff
  • difficulty  walking- feel all crumpled up, stiff, crunchy
  • popping bones all over
  • difficulty lifting- too much pain in wrists, hands, fingers, and arms
  • same when required to use legs to lift
  • TOO weak, everything feels heavier
  • Difficulty focusing/ staying focused – lose train of thought,  can’t finish sentences, forget why in the room or what was just said
  • Can’t get organized, everything suffers, home family friends, life
  • Very Depressed, hopelessness, misunderstood, frequent and long crying jags
  •  Nausea, dizzy and sickly feeling
  • Headaches
  • Patches of prickles , like needles poking from inside out, on arms, neck, face

EXPERIANCING PAIN IN:

  • Hands & Fingers – feel swollen, can’t bend, or grasp. Skin gets too tight. COLD, blue finger tips (both but more intense in right), shake/unsteady, prickly, tingly
  • Wrists – no strength, feel like it’s going to crack right off, prickly , tingly, hot
  • Arms – aches, muscle burn, dead, feel heavy, prickly , tingly
  • Upper arm / shoulder – achy, heavy, prickly  , tingly
  • Neck – stiff, reduced movement, stabs of pain
  • Back of neck/head – stabbing pain out of nowhere sometimes brief sometimes not
  • Face – tingles/ prickles, pins & needles, numbness
  • Lower back- weak cant straighten up, can’t sit long, can’t stand long
  • Legs /thighs – ache, feel dead inside, feel heavy, muscle burn, soreness, stiff, numbness
  • Knees – stiff, feels sand or gravel packed
  • Calves – cramping, sore, tight
  • Ankles – stiff , especially in the morning
  • Skin – prickly, tingly, painful

FATIGUE, FATIGUE, FATIGUE!!!!

  • Have NO energy
  • Fine one moment and not the next
  • Meer walk from couch to bathroom wipes me out
  • Feels like gravity is pulling me down
  • Sudden urgent needs to sit/rest
  • Simple tasks feel like full on workouts – i.e. Walk to kitchen feels like full on hike; doing dishes feels like weight lifting; writing/drawing feels like just did pull-ups
  • Break a sweat just going from one room to next
  • My brain wants to get things done but body wont/cant co-operate
  • Once rested I feel okay and able until I try to do something
  • Even typing wears me out

OTHER PROBS:

  • Forever forgetful – can’t retain or remember info
  • Incontinence – pee when laugh, cough, sneeze, lift, get up too fast, sound of water, see running water, get close to bathroom
  • TMJ – tightness in jaw, wake up clenched, pain
  • INSOMNIA/SLEEP DISRUPTION – cannot get to sleep, pain wakes me up/ keeps me awake, sudden jerking motion, can’t stop moving, can’t turn off body or brain
  • Depression – thoughts of worthlessness, death, long can’t stop crying jags
  • Temperature control – too too cold! Freezing! causes pain OR too too hot, can’t function, need to sit, rest, sleep; difficult finding happy medium
  •  Headaches – migraines, tension, stress, allergy
  • Get dizzy, feelings of vertigo, nausea. Worry I might faint if I don’t sit
  • Eyes get fuzzy, darkness over one eye (left) like it’s shaded or looking through a screen
  • Spend more time feeling bad in a day than I do feeling good.
  • Feel like I am getting no reprieve.

WTF – What The Fibro is Wrong with Me?

 In my previous post I recounted my past six months of Fibro flare-up hell.

It feels all wrong! Not that there is ever anything right about Fibro; but this has been wronger then usual.

Is my fibro changing? Getting Worse?

Actually that is a really dumb question. Of course it is changing. As we age we change, stands to reason that our disabilities change too. Some things get easier to tolerate, while other things get worse.

But what if I am not getting worse? What if this is something completely different all together? It is all too easy to just blame everything on fibro all the time. But the possibility that I could have something in addition to FMS, is feasible, isn’t it? What if I was completely misdiagnosed all together?

This year of pain and exhaustion has felt so intensely bad that this can’t just be my fibro; it HAS to be something more than that.  …Doesn’t it?

I know, I know, that’s what my doctor is for. But there have been issues with the whole seeking medical attention thing this past year. My last visit with my primary care doctor in 2010 was for my routine 3 month fibro maintenance follow-up in October. It was before this flare-up really reared its ugly head, so I reported that I was feeling pretty good at the time. Then winter came in and decimated me with freezing cold weather and blizzards. My regularly scheduled winter flare-up tore me down, big time.

My next 3 month appointment which was scheduled for the end of January, didn’t work out, because I had to reschedule it due to the fact that Ron had commandeered my van for work when his car died and I no longer had transportation. Well, that and it was so bitterly cold that I just couldn’t get out of bed, let alone my house.

Unfortunately, I had to cancel the March appointment too. My sister was in the hospital and sadly, at 23 weeks pregnant, lost her baby. It was a very difficult month both in the weeks prior when the complications in her pregnancy arose, and after – as this was a terrible loss.

We all mourn the loss of the sweet little girl who was taken before we could know her but not before we loved her.

It was the beginning of April that I FINALLY met with my doctor. But it wasn’t a regular maintenance visit; it was a sick visit – for my nasal/bronchial issues. Dr. T is pretty much a stickler about only getting into what the appointment was scheduled for so I was shooed out of the examining room before I had a chance to go into any details about what was going on. But not before he suggested I see a Physiatrist first and then go back and see him. I think he was reprimanding/punishing me for not keeping my appointments…

I had no idea what a physiatrist was, so I looked it up here. And after I checked out the doctor’s website, I felt hopeful that this was going to be my answer. After months of no energy or strength, and constant fatigue and pain I was more than ready for answers. When I spoke with the receptionist to make my appointment, I had to admit that it had been more than 6 years since I had any MRI’s or other testing done. Because up till now I was maintaining my Fibro with meds; and flare-ups, although still painful, came and then WENT.

She told me not to worry; the doctor would order all new tests. When I got off the phone I felt a sense of relief. I just wanted to get answers to what was going on with me. And, here was a doctor that “instead of treating only specific symptoms and illnesses, a D.O. will regard your body as an integrated whole”, according to his website.

I had been going through so much difficulty and pain, all I wanted was to start anew. The seasons were changing and I was tired of hibernating. I had spent so long trapped in my home by the cold weather; my illness; and with still no transportation; and although I still felt like utter crap, I had to force myself to join the land of the living again, if anything, for sanity’s sake. I had been a shut in for so long that even my friendships were suffering. I tend to withdraw from people; friends and family alike; when things get this raw (read painful and depressing). And believe me this was raw!

In my effort to reconnect with my friends (and family) I felt I owed it to them to clarify why I needed to withdraw so much, why I bailed on commitments I had made, why I could not be reached by phone or even return messages. I felt I had to explain that I don’t mean to be a lousy friend, who forgets things, breaks promises, and just disappears.

In the process, of explaining what I was going through, I surprisingly had three separate people who didn’t even know each other suggest that it sounded like I had MS.

MS? Really? multiple sclerosis

I had heard of MS; but in truth I didn’t know anything about it, at all. It would never have occurred to me. When the first person said something to me I did what I always do; I disregarded the possibility that it could be anything but Fibro. After all, I had my diagnosis, and it took forever to get that in the first place, I didn’t want to start questioning it, no way.

But then a second friend suggested it as well. She knew a lot about it and started describing me, to me. All I could do was keep sit there nodding and saying, “Yeah, that’s me!”, “that’s exactly what’s happening to me”, “you are describing me”; her response was, “no, I am describing MS”.

Thoughts that crept around in my head: Oh crap!! Do I have MS? Wait! What the hell is MS?; What are the symptoms?; How do I know if this is what I have?; Do I really wanna know?

So I peeked, just a little, I looked it up on the internet. Just enough to get general info. I am all for getting self-informed and getting educated about something like ADHD, for instance, when your child has been diagnosed with it. But with this, I just didn’t want to read so much in to it, that I’d start self-diagnosing before I even see the doctor. What I read up on was the basics; the symptoms and how one get’s diagnosed.  I also read that it isn’t unheard of for someone suffering from MS to be misdiagnosed with Fibro.

As my appointment with the physiatrist drew nearer I got more and more emotional about how bad this whole year has been so far because of some illness that I have. I just wanted answers and I felt that in order to do that I need to start from scratch. I want to wipe the slate clean and start fresh as if I had never gotten my diagnosis for FMS all those years ago. Like I mentioned earlier, it is all too easy to pigeon-hole everything into Fibro without considering there might be something else going on.

A few hours before my appointment, I sat down and I just started writing and I kept writing until I had 3 pages full of what I needed to remember to discuss with the doctor. I listed symptoms, body parts affected, descriptions of the level of pain I was feeling, the emotional toll it was taking on me, etc.

It was unfortunate that after all the time I took to prepare, I ended up forgetting it all at home. I was beside myself. The poor doctor did not know what to do with me. I just started crying and crying. I could not get my thoughts together, I was forgetting everything I wanted to talk about AND what was worse was this doctor just was not living up to my expectations. I wanted him to have all the answers, to fix me, to order the tests that were going to get me my answers.

The doctor didn’t actually do anything wrong, he was just not right for me. He focused on the pain in my arms and scheduled an EKG/nerve test. Through my tears I managed to tell him I felt that that wasn’t enough. What about the pains in the rest of my body? His response was that he wanted to focus on one thing at a time and he advised me to go back to my primary care physician for a referral to a rheumatologist for my fibro.

I left there in tears. I cried all the way home and by the time I walked back into my house I was sobbing uncontrollably; poor Ron and Leon had no idea what was going on and were very concerned.

I want a doctor that was going to treat the whole of me; not just the parts of me. This is not what I got in this doctor. I realize that I had put way too much stock in this one visit, and my hopes and expectations were waaaay too high. I was overly emotional, and at a loss. Now what?

The fact is I don’t see a rheumatologist although I know I should, but after never being able to get an appointment with the one that I initially had, the one who diagnosed the fibro, I began to rely on the neurologist that she had sent me to. I was maintaining fairly well with the meds that my neuro had prescribed.  Eventually I lost my neuro too, due to the fact that she became ill and left the practice. In the end I never did find a new rheumatologist or neurologist; my primary care doctor was prescribing the medications I needed, so I felt that there was no need to find another one; till now that is.

Last week I met with my primary care physician, to discuss a plan. This time I did not forget my notes. Even so, I was still a blubbering fool, with tears falling uncontrollably from my eyes, as I explained how bad things had gotten and how lost I felt. I explained that I was concerned that what is going on with me was something worse than Fibro and I shared the suspicions of MS that others and now myself had. In the end my doctor told me that he feels that I have extreme Fibromyalgia and that I am suffering from severe depression; he also feels that I am beyond his help at this point and he referred me to a rheumatologist and a psychiatrist. When I questioned the MS again, he told me that he felt it was unlikely that I had MS at all. I would love to just accept that but I am too worried about something being over looked because it is too easy to stick with the original diagnosis. He gave me the name of a neurologist to call, if I felt the need to pursue it.

I do and I did. Feel the need to pursue it I mean. I have an appointment with both a rheumatologist and a neurologist next week. I have not scheduled an appointment with a psychiatrist yet as I have yet to find one that takes my insurance.

In the several days it has taken me to write this post (I can only do a little at a time due to the pain in my arms and hands) the tears have seemed to come to a halt. Writing and getting all these thoughts and feelings out of my head seems to help a lot. But I will bring the tissues to my next appointment; just in case. 😉

Too Many Tears in my Ears

I lost it on Sunday. I was just trying to be ‘normal’, just trying to do normal. But it was just too, too much.

Lately that’s nothing new – things being too much, I mean. By lately, I mean the past 6 months, and by things, I mean everything – life, pain, thinking, breathing, functioning, and living all of it.

I feel like I have lost so much of my life in the past 6 months, I was just trying to get a little bit of it back.

Last year was a pretty decent year but I must say this one pretty much sucks big time.  My health started to take a real steep dive just before Christmas 2010. Our winter was brutal. I think we had a total accumulation of about 60′ of snow. We had snowstorm after snowstorm after snowstorm and then some.

My annual winter fibro flare went in to high gear. The extreme cold had its grip on me. I was snowed in, in more ways than one. I pretty much did not step foot outside the house unless I had to. When I did, I would instantly freeze up from the inside out, the pain and stiffness was just too much to bear. I spent my days either in bed or on the couch for most of Jan and Feb, I felt like a bed ridden shut in.

And the worst part was that it was just never-ending. Never ending pain and never-ending fatigue.  I just could not wait for spring to come, for this flare-up to end!

In January, Ron’s car broke down the same night of a big storm. We knew we would have to get it looked at but aside from it being completely buried under a few feet of snow; we didn’t have the money to have it looked at, let alone repaired. He did manage to dig my van out and he used that for the next several weeks which turned in to a few months. I had no car, in an area where a car is practically a requirement. But, I didn’t mind, I was still in way too much pain to even leave the house for the time being.

On top of this all too long flare-up that I was caught up in, I also got real sick in the end of February. It started out normal enough, with a sore throat, post nasal grossness and a sinus infection but then turned ugly in a really bad bronchial, can’t stop coughing, cold sweats, have no energy, and I think I am going to die sort of way. That lasted into the first week or two of April. Thats 2 months worth of mucus people; not what you need during a mega flare-up

So there I was in a never-ending flare-up with a never-ending cold during a seemingly never-ending winter. MISERABLE!

THINK SPRING! THINK SPRING! THINK SPRING!

Spring was just a big tease! She’d show up for a day or two; and then wham winter claimed the next few days again. And this was NOT a onetime occurrence, I’ll tell you that. It seemed Mother Nature just could not make up her mind. But eventually the sun stayed and flowers started blooming.

This is normally the time when I start feeling stronger. But, I came out of the whole sinus/bronchial/death thing; feeling weaker than ever. I just could not function. All normal daily activities were suspended.

The pain was still there, the fatigue, the stiffness, the I-am-so-caught-up-in-this that-I-can’t-catch-up of it all, was STILL there. And the weakness, and lack of energy, that was there, the I just can NOT function at all, the I can’t think straight, I can’t remember things that just happened moments ago, the holy crap my mind knows I’ve got things to do but my body isn’t letting me, was all constantly in the way.

That’s NOT normal, not for this long anyway even with having fibro.   THIS was something different – SOMETHING WORSE – more intense, with new symptoms and different pain.

I am not used to never-ending flare-ups. Nor was I used to the new more intense symptoms. It’s all been just too all-consuming.

And though I have said it before; it doesn’t just hurt me physically, but it contorts me emotionally and mentally too! And then, there is the fallout that affects those closest to me. Ron and Leon being the primary victims.

I feel like a failure as a mother and wife! Poor Ron has had to do so much more than his fair share. He is exhausted and stressed from work, taking care of Leon and taking care of me. My worst fear has always been losing the people I love, like I lost my father. But I now fear something worse. I fear that Ron will grow to hate me, and resent me and my illness.

Leon suffers the effects just as much, in that his mom isn’t all that present. I feel like a non person right now. I am failing the two most important people in my life, and I am failing myself.

Supermom has left the building and the kryptonite which is my illness is killing that part of me. The me I want to be, part of me.

I haven’t even been physically able to keep up my own home. So crap has been piling up since January. At this point we could be featured on hoarders, because life is cluttered and messy and I do not have the ability to clean up after life. Even with Ron’s tremendous help, it’s been nearly impossible to catch up. And when we get close more comes our way and everything is put on hold.

It’s been 6 months of this and while Ron has done everything humanly possible to juggle everything, it hasn’t worked.

It’s time to get back to normal. I just want to get back to doing normal things. I And we need to start at home. Ron and I committed the weekend to doing just that. We were trying to clean up and organize 6 months worth of mess in just one weekend. I pushed myself to the limit. And I broke!  I pushed way too hard, by the end of the day on Sunday I could barely stand straight or move without a yelp or painful grunt. I was spent in every way possible, just struggling to walk from one room to another. Ron wasn’t faring any better. With both of us completely spent, and only one last nerve left between the both of us; it did take much for it to be triggered.

I don’t even remember who or what triggered it initially, I just remember being disgusted with my self and my situation, and questioning “why me?”; I lost it. And I lost it BIG!! I just collapsed into bed and started to cry and cry and cry and I just could not stop.

Today is Wednesday and I’ve been crying every day since.

This year has been all too too much!

There have been way too many tears in my ears; it’s time to find out what is wrong with me.

Something is definitely wrong with me!!

The truth about housework, sex, and fibromyalgia

I like sex. Most people like sex. Some people like it more than others and some don’t like it at all.

I cannot speak for everyone, but I am pretty sure that the majority of people tend to experience a more frequent and active sex life in their younger years.

As life goes on, it seems as if, frequency, activity levels, and even desire seem to fade.  Some even feel that, it is marriage that does it. I personally don’t think it is marriage that does it, it’s just plain ol’ life that get’s in the way. Too much work, too much stress, not enough time, not enough privacy (kids around), too tired, and for some folks like me, something like illness or disability can get in the way too.

Fibro flares have a number of different triggers. Physical activity and exerting one’s self is one of those triggers. And let’s face it if you are not physically exerting yourself in the bedroom then maybe you aren’t doing it right.

So suffice it to say that my fibromyalgia has the potential to ruin my love life.  In fact for a time it really did. With flare-ups and the exhaustion and pain that come with it, something always has to give. That is just a fact of fibromyalgia.

With fibro too many things get put to the back burner. Projects and activities I want to plan and do rarely get further than being just an idea in my addled brain. The energy to do the everyday things in life, like housecleaning or even personal maintenance has to be sparingly doled out. Too many things get pushed to the side, with the intention of getting to it eventually.

The time, attention, and affection we give to the people we love, should not be one of those things that get pushed aside, or put on the back burner. But because the people we love, know us so well, and are more understanding of our limitations they often bear the brunt of it.

At the beginning of this year Ron and I had a moment to sit back and talk about how much we missed each other. Which would not be so strange if it were not for the fact that we were the first and last person that each of us saw and spoke to each day.  What we missed was the physical attention we gave to one another.

Yes, we were talking about sex, but not just about sex. We also missed the little touches in between. The touch on the shoulder, the arm around the waist, the holding hands, the kisses and the occasional butt squeeze, and yes, the sex that many of those things could eventually lead too. Where did all those things go?

We had plenty of excuses; too stressed, no time, too tired, too busy, no energy, too many body aches, too much to do right now, too much to do tomorrow.

Granted these excuses fit anyone and everyone, fibro or no fibro. But unless you have a trapeze in your bedroom, how many people have to worry that a night of sexual activity might put them out of commission for the following day or two?

And that is without the trapeze in our bed room 😉

Our talk led to the promise we made to each other. Which was to make more of an effort to be more physically attentive with one another on a daily basis. To snuggle on the couch instead of sit at opposite ends of it, to kiss more often, and hold hands when our hands are free. To rest a hand on each other or give a little squeeze when then opportunity presented itself. And yes, to make time for sex, even if it has to be scheduled in.

So we’ve kept our promise. We have made more time for just the two of us. We have a monthly date night scheduled. And we  are a lot more physically attentive to one another, both in and out of the bedroom.

I’ve got to say, life is a lot sweeter and happier in the arms of the person I live and breathe for.

The only downside is that, the energy that goes into the physical activities in the bedroom tends to trigger a fibro flare in me.

And with fibro flares, something always has to give. Fibromyalgia could be riuining my sex/love life. but we REFUSE to let it!

So please excuse my filthy house; but if you had to make a choice between making love or housework, what would you choose? 🙂

…and so what, if I can’t function at 100% the next day or two, at least I have a smile on face,as I am trying to figure out how I am going to catch up with life that is still proceeding on with out me.

TMI????

Gettin’ my Creative Juices Flowin’

I have often heard;

“you are so talented, you should start a business”.

That would be WONDERFUL, I’d love to do that.

The question is; how? I have no business sense and the coin purse is empty. And you know the old adage; it takes money to make money.

And then, there is the lack of confidence in my talents

It’s not that I do not believe that I have any talent, it’s just that I feel there are people out there that are so much more talented than myself.

It doesn’t stop me from enjoying the creative process though. And sometimes I even impress myself with the outcome 🙂

My creative talents have included:

Drawing – it’s been a while, I did a lot of drawing as a child and in my teens. I have only recently taken it up again. I even tried some creative drawing on the computer to make some matching t-shirts for our trip to Disney;

Trip Planning – YES I definitely consider trip planning a creative talent!! And I do it well, especially when traveling with a highly sensory child with ADHD/ODD. Accommodations for travel require quite a bit of creativity. Like the badge I made for him to wear that clearly outlined the rules with a visual prompt.

Badge that "MICKEY" sent to Leon

Event Planning – like my DIY wedding where I made everything from the centerpieces to the floral arch to the ring box to the 150 hand-painted Champaign glasses I made to give as wedding favors to each of my guests.

The wedding arch

Close up

One of my centerpieces and a set of hand-painted champaign glass favors

Enough people told me that I should go into business selling my Glass Painting that I decided to give it a try.  I successfully sold a few pieces but in the end I wasn’t making enough money to cover the time, effort, and money it took to not only paint each piece , but then to pack everything up and transport them to a little craft fair, where I paid $60 for a table, only to sell a couple of pieces that maybe made me $40, and then have to pack it all back up and bring it back home. It just didn’t pay.

I also have helped to plan a few showers, my sister’s wedding, and quite a few themed birthday parties for kids. I love doing it. Especially the themey stuff

I was very proud of the School Bus cake I made on Leon's 1st Day of School

Leon’s 2nd Thomas Birthday Party  – he didn’t know how much I put into this party but I had fun doing it

I made one cake for the adults and little individual ones for each child

Leon’s 5th Pirate Birthday Party – yes my spoiled little child had 3 parties and 3 cakes

I hand-painted this shark to use as a game, it was fun as a photo prop too!

Leon’s 8th Lego Birthday Party;- this was a really fun party!

Lego Mini Marshmellow heads - real easy to make

Kiera’s 1st Ladybug Birthday

Ladybug Themed tutu I made for Kiera's 1st birthday

If I knew how, I would love to make money as an event planner.

Photography  – …is another talent I have. More specifically I have an eye for. Ron, often tells people that I am a photographer, and it bugs me, because I am SO NOT a photographer. I WISH I was, but at best I am a photo enthusiast. The difference being that although I thoroughly enjoy photography, and have an eye for capturing great shots; I pretty much have no education in photography at all.

I can really relate to the guy in this Panasonic Lumix commercial:

..see it’s not me,  it’s my camera! (which btw is a Canon)

…plus some creative digital photo editing too.

Basically I am just winging it.

When Leon was born, my love for photography grew, and my need to share it grew too. I started showcasing my photos on my smugmug website for all my friends and family to see.

First time using a spoon

(btw -gardening is NOT one of my talents)

As a result I was asked by two different sets of friends to photograph their weddings. Of course I said yes, it was an honor to be asked. I never expected to be paid, but when one of the couples thanked me with $1000.oo check , it gave me the confidence to try to make some money doing what I loved.

I got a few jobs and made some money, but most of my jobs were for friends and I had a hard time charging them, so that didn’t last too long. I also  needed better equipment in order for my photography to live up to my own standards.

In general I don’t know that I am so much talented as I am creative and crafty

And recently I have been inspired to try a new craft;

I was honored when my sister -in-law asked me if I could make a few things for her wedding. She pointed me in the direction of Etsy.com where she had seen a few things she had really liked. I was already familiar with Etsy, but I had never really perused the wedding category. One of the things she had pointed out to me, started to get my creative juices flowin again. It was something that I have tried my hand at before, but I didn’t really feel that there was a big demand for it. But with the trend of weddings being a bit more green, the rustic look of woodburning seems to have become a bit more popular.

Woodburning – is now a talent I am trying to cultivate. And I am really enjoying it. And who knows maybe I can even sell a few pieces on Etsy….

This is just a practice piece - but it gives you an idea of what I am going for

Besides what else is there for this SAHM to do?…uh, besides taking care of an ADHD child, managing my Fibro, keeping track of $800/month medicines, PTA volunteering, School Newspaper editor and author, caring for my 3 year old niece, plan playdates, etc.., etc…, etc…                            …oh yeah and maintain this blog.

Happy Birthday to ME!!

I celebrated my birthday this week, and despite my grumblings about the weather, it was very nice!!

I’d like to thank all the people who made my birthday special, and in case you don’t know who you are:

~ my Face Book friends, some of which I see on a regular basis and some I haven’t seen in many, many years or even ever met before (Lynn 🙂 ) for all your  well wishes from around the world.

~ well wishers who emailed, phoned, or sent cards, from NY, AZ, TX, and Germany 

~ friends and family baring gifts, from CD’s, DVD’s, tickets for two to a show in Manhattan, orchids, balloons, a family night at home, a fun – albeit VERY LOUD  night out – with both family and friends, CASH (thanks Mom), two tickets to see the cast of GLEE in concert, to being made Queen for the Day by my precious son, Leon.  I gotta say I really did get a kick outta Leon answering everything I said with “Yes, my Queen” or “As you wish, my Queen”  😉

I am one of those people who loves celebrating birthdays; especially my own. And definitely not because I am enjoying the aging processes; but because I am enjoying the living process.

Yes, yes, I know I’ve been grumbling a lot lately about how difficult it has been for me of late, living with FMS. HOWEVER, that is just what is at the surface of my life at this time. But beneath that layer of unfortunate… crap; lies many other layers of my life.

My ever-growing and never ending love life with my husband; the joy, wonder and pride  of watching my son grow and become; my sisterhood and friendships with friends – new and old; my ever-changing, ever maturing relationships with my family near and far, whether blood-related or bond-related; my accomplishments and achievements as a mom, a daughter, a sister, a friend, and a woman; life lessons I have learned and passed on; events and experiences I have yet to encounter; these are all layers of my life. These are the things worth celebrating!   

Happy Birthday to ME!!!    

My Valentine, My Superman

Happy Valentine’s Day to All!

….But especially to my husband and my son.

 
It is because of my husband and son,
that I am a heartless woman.
Ron has one half of my heart,
and Leon has the other half.
 
 

 

 

I fell in love with Ron almost immediately. Our blind date was part fairytale, part racy novel. We walked, we talked, we watched some videos (yes back then it was videos, not DVDs), we kissed, we talked for hours on end; with some more kissing in between, we felt sparks and acted upon them, we had brunch, we walked and talked some more on the beach, we went to a movie and he drove me home. We did all of that in one date; one very long first date – 36 hours to be exact. And we have been together ever since.

I started falling in love with him on that first date. A few days later, I told Andrea, the friend who had arranged our blind date, that I was going to marry this man. And I was not wrong.

I fell in love with him because he was a good kisser, a great listener, imaginative, smart, caring, passionate, sensitive, interesting, spontaneous and good (at a lot of things). And because he made me feel special.

After almost 11 years of marriage a lot has changed in our lives. But not the way I feel about him.  We’ve been married long enough to have had a few ups and downs, but through it all we have always loved one another. That is no surprise to me, it goes without saying; because I know deep within my heart and without a doubt that Ron was made especially for me.

What surprises me, and catches me off guard sometimes, is those moments when I fall in love with him all over again. If only because, I didn’t think our love could get any bigger.

It’s happening right now, in fact. Over the past couple of months I have watched him care for our son and for me like he never has had to before; and it has me falling in love with him all over again.

This self-proclaimed SuperMom has found her kryptonite. It is  the combination of record-breaking cold temperatures and snow with my fibromyalgia. It has kept me immobile and either on the couch or in my bed for months. I’ve had to reluctantly, and with much guilt and despair, hand over my title of SuperMom to him.

He’s had to become SuperDad. Not that he wasn’t a super dad before, but this winter; this New Year so far, can not, and has not been easy on him. In the wake of me having to check out for a while he has had to step up big time. And boy has he ever!

He has had to be the one to get up with Leon when I can’t get out of bed (and right now that’s been 9 times out of 10, instead of the other way around); he’s been the one to get him showered and dressed, make his breakfast, remembers to give him his meds and packs his lunch and then gets him on the bus in the morning. Then he goes off to work for eight hours. When he gets home I am no better than when my day started. It’s gone beyond the usual discomfort and/or pain which was bad enough already, but not only has the intensity of the pain increased but the fatigue and the loss of energy has me so incapacitated that I can barely participate in life right now. I know that the weather is a major contributor to this change in my life but I suspect that my age and my changing hormones might be messing me up too. What ever the reason, the result is has been less than desirable. Rather than Ron and I working to care for our family together: Ron has had to take on the brunt of the responsibilities in caring not only for Leon, but for me as well.

And while I feel lousy about all of this, I can’t help but feel as if I am falling in love with Ron all over again, and again, and again!

He’s not just my Valentine, He’s my Superman!!

 

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And the WINNER for My Dumb-Ass Move of the Week goes to …

Shoveling Snow!!

Well I wasn’t so much shoveling snow as I was moving it around.

We had 15inches of snow on the ground yesterday when all was said and done. It was quite a beautiful site to wake up too (see previous post)

Poor Leon had a snow day and was stuck at home ALONE with his dear old mom. That would be me – Dear and Old… among other things, like in pain and overly fatigued.

 

We spent the morning playing the Wii (well he played, I got to watch) and watching “Back to the Future”. By 11am I felt we had had enough screen time, I wanted him to go out and get some fresh air, play in the snow a bit, get some much needed vitamin D. But he just kept saying he rather stay in and play Lego. I didn’t argue it, since I had kept him home sick the day before (stomach bug).

Every so often I would remind him of how much snow was out there, and all the cool things, that he could build with it. He finally admitted that he wanted to go out but he was waiting for Daddy to come home first.

I explained that, he doesn’t get home till after 6pm and that it would be too cold and too late to go out then.  He then said “Oh okay, I’ll go out now, but it’s nicer to be out there with someone, and I didn’t want to ask you”, then he added “Well, not because I don’t want you with me; but because I don’t want you to have more hurt from the cold”

I cried inside when he said that. It’s times like that, that I really just hate myself for having fibro; and I hate that I didn’t push harder to have another child (which can also be blamed on fibro). FIBRO SUCKS!!

I told him that I would be okay and I went outside with him (I lied).

When Leon saw the neighbors having a play date with each other across the street he asked if we could invite them over to our yard. I said yes of course but I was sure they would say no. Not because they are mean kids or anything remotely like that, quite the opposite. But because, aside from the fact that they already had their own fort well under way, I think they know Leon well enough to know that he has his own way of doing things and often has his own agenda and doesn’t always compromise so well.

Leon took it in stride and just asked me to call another neighbor, which I did just to appease him, knowing they would decline too. For no other reason than they are girls after my own heart – they do not like snow. Again Leon took it in stride, and asked me to call a classmate, and then someone else, and then someone else, down the line.  You see, Leon does better one on one, rather than in a group and even then sometimes he isn’t necessarily looking for one particular person to play with; he just wants another warm body around.  –That’s a little sad don’t you think? How do I fix that???

I know a few of his classmates that I could have called, that would probably have come by, but the truth is I really didn’t want a play date at our house. I was feeling lousy and I suffer from CHAOS (Can’t Have Anyone Over Syndrome) because I can’t pull myself together to clean up around here. I didn’t want to see anyone, I didn’t want to talk to anyone, and I certainly didn’t want to have to change out of my snuggle pajamas and give up my blanket with sleeves. Having the neighborhood kids over is one thing because once they were done playing outside, I could just send them back across the street. But having a classmate who needs to be driven over, in tales a bit more work and planning. I just was not up for it.

Leon hates to be alone; he always needs someone in the room with him. He would rather read a book in the same room with someone rather than play with his toys alone in his room. The closest we get to him playing in his room on his own is if we are in the adjacent computer room; and even then, he will move whatever it is he is playing with into the doorway so he can be nearer.

I felt bad for him; even though I knew he was fine out there on his own. But the mommy-guilt got the better of me.

So there I was shoveling snow into huge piles for him to make a fort out of, fully equipped with snow slide. The snow was very heavy and there was tons of it. It was definitely my dumb-ass move of the week given how bad of a Fibro-flare I am having, especially when considering the fact that it is the snowy weather that is triggering this never-ending flare-up. Today I am paying for it big time!!!

It was a mistake, one that I knew I was making at the time I was making it.

So why do it?

This is why……

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The things we do for our kids!

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