Just call me Jiji

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

Archive for the category “Fibromyalgia”

Just Call Me Jiji

I’ve changed my look…

Well not my look, but the look of my blog. I wanted to go with something a bit more user friendly.

And with the changes comes a new name for my blog……   “Just Call Me Jiji”

~me, pretending to be me. ~now, where did I put my cape?

I discuss my life, my family; the issues we face, the things we enjoy doing as a family, and the things I enjoy pursueing by  myself

With this new look, you, the reader get to go straight to the content you are interested in.

This is what I write about and why I write about it.

My Home Page – All posts in chronological order starting with the most recent. My blog tells my story and the story of my family; warts and all!

Hello World – About me, this is who I am, or at least who I try to be.

Disabilities and Special Needs – I discuss those disabilities and differences that we, as a family face on a daily basis; and the treatments and accomidations that accompany them.

  • ADHD – My son Leon was diagnosed with Attention Deficit Hyper-Activity Disorder-combined type, at the age of 5. It has severely impacted not only his life but both his father’s and mine as well. I’ve learned a lot from my little boy, and I suspect I too was born with ADHD. At this time I still remain untreated, but I am working on that.
  • Aspergers/ Autism –  At the time of this writing, it has been 6  weeks since Leon was diagnosed on the Autism  Spectrum with Asperger’s Syndrome (AS). This is is my first mention of it on my blog. It    has taken me this long to let it sink in. I am sure there will be many posts on this topic to come, because as of right now I feel as if I am starting all over again. I am a newbie again and have a lot to learn.

  • Comordids –      
                         …Oppositional Defience Disorder (ODD) – Along with Leon’s ADHD      diagnosis he also recieved a diagnosis of O.D.D, and boy is he ever. His defiance aside, my strong willed kid with some pretty strong convictions.
                         …Sensory Processing Disorder (SPD) – Leon has always presented with sensory issues. I have long suspected that he has SPD, and have written about it in the past. Now, with his new diagnosis of Aspergers, it makes a whole heck of a lot more sense.
  • Fibromyalgia (FMS) – I was diagnosed with fibro when I was about 28, although symptoms were present much earlier than that. It’s been a rough road, but I keep on trekking. As much as I hate reporting that which is so negative, it helps to get it all out.
  • Treatments and Medication- When it comes to my own health I am not as diligent as I should be, and for that I do often pay the price. But when it comes to Leon’s health I am a stickler for staying on track. I am well familiar with the old adage that states; to care for others, first one must care for one’s self. That is much easier said than done, but ultimately I aim to get healthy not just for Ron’s and Leon’s sake but for my own as well.
  • Special Education – This has got to be my least favorite topic, but when raising a school-aged child with a disability, it becomes one that often comes up. I have had my fair share of Special Education meetings, both good and bad. If I can pass on some helpful information that may potentially help other parents I am happy to relive some of my experiences here.

DIY – I’ve always loved using my imagination and being creative. I love the feeling I get when I see something and think, ” I can do that” or even, ” I can make something out of that “. It’s taken me a long time to amass some measure of confidence, but I am ready to admit I do have some talents.

  • Crafts – Drawing, Woodwork, Glass painting, Digital Scrapbooking, Clip Art, Costume making, and more
  • Party Planning – I love, love, love planning parties and making the Holidays Special. Give me a theme and I will make it happen.
  • Photography- I have always loved the art of photography. What I lack in technical skills I make up for with my eye for photographs. The thing I love most about photography is the ability to recall so many memories from a single photo.
 

Home Life – For me, home life means family life, after all, home is where your heart is.

  • Family – the  main characters in this blog are myself, my husband, and our son. In our house, it is just the three of us; but in our family there are so many more.
                              ...Just Jiji – Jiji (Gee-gee) is the name my precious niece gave me when she was just learning to talk, I enjoyed hearing her say it so much, it stuck. More info about me can be found here
                               …My Superman – My husband of over 10 years now, is every wish, I ever made on a star, come true. He is every prayer  for a good and happy life, I have ever prayed, come true. My life; the one I truly love living, despite it’s upheavals sometimes; begins and ends with him.
                                  …My Alphabet Boy – My son with his AS/ADHD/ODD/SPD/L-M-N-O-P  is the greatest gift in my life. from him I learn how to be me. I thank god for him every day.
  • Parenting – Being a parent is the hardest most gratifying job in the world, and the most important.
  • Holidays- just as much as I enjoy planning parties; I love planning for the Holidays and celebrating with family.

Travels – I love to travel! And I especially love to plan our trips. I get a little high off of finding great deals and planning out little side trips. We love amusement parks; especially ones that we can get wet in.

  • Disney World – I love me some Disney!! If I could I’d go every year. I’ve had a few trips that I still have yet to turn into a trip report
 
  • Theme Parks – Leon’s love of water parks started with Sesame Place in PA, and now we make sure to hit a theme park or water park  at least once a year.
  • Other Destinations – As much as I’d like to make Disney our annual trip destination, our finances (or lack there of) always get in the way. But we always make it a point to go somewhere, even if it is just a weekend road trip to PA.

Just For Fun –  

  • My Favorite Things – ever come across something and just want to share it with everyone cause it’s “just so cool!” ? Well this is where I do that. Well here and on Pintrest
  • Slideshows – Just some pictures I’ve shared over the years

Picking up the Pieces

So my previous post was a bit DESPERATE, don’t you think?

I was in a pretty pathetic and desperate state of mind.

But today is another day and I’ve got some repairs to make.

I am happy to say I slept a good 10 hours that night. Something I definitely needed. Not napping created the crash and burn effect I needed to restart my clock. I’ve been eating better and taking my meds ON TIME, and at least TRYING to get on a better if not normal sleep schedule.

The morning after was tough and slow going. I had a very heavy patch of brain fog going on and it lasted quite a while too. But that was to be expected and I just made my way through it.

When life gets you down do you wanna know what you’ve gotta do? Just keep swimming. Just keep swimming. - Dory, ” Finding Nemo “

When I woke up the next morning, I decided to take a ME DAY!

…and now I am thinking maybe it’s more like a ME WEEK. ….or 2 ….ish.

I really need to pick up some pieces and get back on track. Because believe it or not I was somewhat on track. Really, I was! December went fairly well for me in terms of getting things done.

As the holidays approached, I was able to Christmas shop, get my house back together, decorate, and celebrate with family and friends, but not without the HUGE, HUGE, HUGE help I got from Ron. (…and Leon too). Thank you, my loves!

All the clutter found a home or else it went into the trash. We cleared away piles of stuff that we really did not need any longer. And while there was/is still more work to be done, we were able to make our living space, livable and our workspace, workable again.

We decorated the house and the beautiful Christmas tree that Ron and Leon went out and chopped down, during the Annual Oldfield Christmas Tree Hunt. The house was finally a warm and welcoming place again. Everything looked so beautiful and inviting. AND PEACEFUL.

The lights are my least favorite part of decorating the tree

Awww fiddlesticks - half the tree lights don't work

We spent Christmas Eve at home with our family, both Ron’s and mine came for dinner (17 of us in total). And the thing that amazed me the most about it was how relaxed I felt. Tired, but relaxed.  Finally!!!

I love taking out my china for the holidays, it makes me feel like I'm almost a grown-up.

Can you see the tree in the next room?

I realized it was because my house was full of the people I love and who love me, AND because Ron and I had put so much effort into putting order back into our home.

Santa Ron!

My Family

My loveys

Like mother, like daughter

She's waiting for Omi to cave, an hand over the chocolate.

You blow boy!!! In a good way!

The Angel and the Devil, but which is which?

Cheers!

Cheers!

Cousins!

Much of the week that followed Christmas, was spent relaxing in the glow of the Christmas lights, watching Leon play with all his new toys. We spent some time visiting with family, Leon got to go ice skating (can you imagine me on skates, HA!), and we took our traditional trip into NYC to see the tree in Rockefeller Center and check out the Christmas Window Displays.  We ended our winter break and the year at the home of a dear friend watching the Doctor Who marathon. It was a wonderful little staycation for all of us, and it certainly ended the year nicely.

Leon and like a third of Grandma's Christmas Village

Our Tree! The lights flying off to the side are actually being pulled by Santa in his sleigh and his 8 tiny reindeer.

Leon and his Christmas haul! It was a very Merry Skylander Christmas!

Now in the midst of all that activity, I had made one big mistake. I ran out of refills for my Cymbalta and kept forgetting to contact the doctor’s office. So for about a week-ish leading up to when I completely snapped (see previous post) I was off meds.  No wonder I had been such a WRECK! – DUH!

But NOW, I AM doing better,

So to those of you who reached out, THANK YOU! AND I LOVE YOU TOO!

I am feelin’ better, so no worries. But I need to take some ME TIME.

So…   I am not ignoring you. I am just under repairs,     ….and probably not answering the phone,    …or emails.

But I loves ya!!

Oh and Happy Christmas, Season’s Greetings and a Joyful New Year to all!

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.

Sorry I am not in right now,

To All My Peeps,

I feel as if I have nothing left to give right now. I am empty and some what broken… and my brain has taken an extended vacation.

So …..

if it seems like I am not available to you…

if I seem flighty and inconsiderate…

if I decline invitations or worse yet break our plans at the last minute…

if I forget some big important thing or even something small and insignificant…

if I don’t answer or return your call, IM, or email…

if I disappear awhile and then reappear…

if one minute I am listening and the next minute I am not…

Please forgive me…….; I don’t mean to be a bad friend, I just feel very overwhelmed by life right now. But I am taking it one step at a time and I am working on it.

if I act as if everything is just fine and dandy, even though it’s not and I don’t want to talk about it; if I act as if I am cracking up one moment and normal the next; please just let it be, because normal is a luxury for me.

So if I have been inconsistent, unreliable, or just an out right pain in the ass….. please forgive me and thanks for putting up with me.

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!!!

It’s my party and I can run myself into the ground if I want too!!!!

With this year being as difficult as it has been, doing something I truly enjoy hasn’t been much of an option.

One of the things I really enjoy doing is planning something special and hosting parties for special occasions and holidays. Traditionally, we host big Christmas and Easter celebrations for our family of 17 every year with special extras like traditional Weinachts Teller and Easter Egg Scavenger Hunts, birthdays of course are also real big here, and I plan big too complete with banners, balloons, and birthday fairies. Then there are the smaller  holidays and events that I try to make fun and memorable, like New Years Eve where Leon gets to stay up late and bang pots and pans at midnight; Valentine’s Day where we decorate the windows and make heart cakes; St. Patty’s Day where Leon leaves out a decorated treasure box at night for the Leprechauns to fill with gold and greenery; the last day of school where we have a big get-together in our yard complete with wet and wild summer activities to welcome summer vacation; 4th of July BBQ, which Ron has been hosting for 20 + years; Halloween… etc… etc… etc..  .

But due to all my health issues this year, I just haven’t had it in me to make these special events happen, I even had to cancel Easter at the last minute this year because I was too, too sick to make it happen, and that is saying a lot. I was so incredibly disappointed in myself. And for as much as everyone reassured me that it wasn’t a big deal. It WAS a big deal to ME! I loooove hosting the holidays, it was a big letdown for me and I lost out on doing something that makes me happy doing it. Even the Leprechauns made a poor appearance this year because I just could not do it.

Leon always looks forward to the backyard party we have on the last day of school and I was not about to disappoint him or myself. I knew full well that I would pay for it in the end, and that it probably would end up being a bit too much for me, but there was no way I was not going to have our year end “Welcome Summer Party” for Leon and his friends (and for me and my friends too).

The invites went out, and the responses came in. As the date came closer I started to have some doubts. Every day has been a painful one for me at some point during the course of it. There was no reason to believe that this day was going to be any different. I wondered if I would make it through my own party without excusing myself to take a nap. I started begging Ron to take the day off so he could help me get through it (that was unfair of me I know).While he could not take the day off, he did go above and beyond in helping me turn this hoarders paradise back into a home.

Leon’s last day of school was a half day on June 25th. I spent the morning rushing around and breaking a sweat as I was working hard to get the yard ready for 20 + kids and 10 + moms; that I had absolutely no time to wallow in the pain.

It was a really great day, despite the threat of rain. The kids arrived with their moms and headed straight for the water slide, while us mom’s headed straight for the Coconut Pineapple Mohitos.

I didn’t get to sit in a chair for any good length of time with all the running around I had to choose to do. I had a bunch of fun summer activities planned.

While we waited for the rest of the guests to arrive, the kids jumped from pool to pool and discovered the big box of prefilled water squirters.

Once all the guests arrived we picked teams for the water balloon fight. The kids had a BLAST!

There where plenty of other activities for the kids as well.

Like jumping on the trampoline;

playing with Lego;

drawing with chalk;

 building a castle;

 huddling together in pop up tents;

and just all around having fun with good friends.

It was tons of work to put it all together and keep things rolling! By the time I finally able to really take a seat and relax; I was exhausted and in pain. The pricklies on my arms were feeling hot and hurtin, and my legs were heavy and aching pretty bad. As the party was winding down I was dreading the worst part of the party, and that is the clean up. All the work to get it together and only a few hours later it needs to all be broken down again. I was NOT up for it any more.

As luck would have it I have some really amazingly terrific friends!! Everyone just chipped in and helped put everything away in no time, despite my arguments to “just leave it”.  In a blink of an eye the pools were drained, the castle was boxed up, as was the Lego, the chairs were stacked by the garage and the dishes were done. I don’t know what I would have done without my good friends to help me.

And now here I am just days later and I am still paying for it. I may have spent the the last 2 days in bed, but it was definitely worth it to see this smiling face;

And hear him say “mom, thanks for inviting all my friends over and having a party; I had so much fun!”

Yup, it’s my party and I can run myself into the ground if I want to!

… Cause it’s worth it!

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????

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