Just call me Jiji

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

Archive for the tag “life”

Extra! Extra! Read All About It!

Here is a (very belated) update on “Leon’s Locks for St. Judes Kids Fundraiser”.

As you may or may not know my son, Leon, had been growing his hair since 1st grade to help a child at the St. Jude Children’s Research Hospital. Four year’s later my little guy isn’t so little anymore and is going into 5th grade (I KNOW! Right?) and met his goal to donate his hair. He also has met part of his goal to help the children of St. Judes. While he did not meet his personal goal of raising $5,000 he sure as heck did an amazing job in raising over $1500. His story ran in a local newspaper a few weeks ago. You can find the story here, but please note that the link provided in the story has been unfortunately closed, we are looking to reopen the event.

We are just so proud of him. He is just such an amazing kid.

Advertisements

What can you make with fishing line, crazy glue, and scissors?

Well, probably a lot of things. But what Leon made was a messy and chaotic morning!

English: A pair of kitchen scissors.

Ron has gotten plenty used to dealing with Leon in the mornings. While I sleep through it all.

But today woke up to Ron yelling and Leon screaming. From what I could make out, Leon was not staying on task and Ron was getting frustrated over …all of it(?).

So I stumbled out of the bedroom to see if I could give a hand. What I witnessed was Leon in all his …ADHDness! And Ron cleaning up after him with steam coming out of his ears!

I recognized this scenario right away, it is  the same one I deal with, when Leon gets home from school. But I also saw something else… a reminder. A reminder of what can happen when Leon is left up to his own devices. He really does need supervision when he isn’t at his best. Which translates to; when he is off meds.

My first question to no one in particular was, “has Leon had his meds yet?”

Ron answered “not yet!”, with a huff.

I sat down next to a very fidgety Leon and placed my hand on his shoulder, and reminded him to “Take a bite”, he did as I said as he yanked himself away from me. There was too much left on the table from the night before. I took a toy out of his hand, “BITE”, I reminded him again. He grabbed for the next closest thing as he took another bite. I held my hand out, and he knew to place it in my hand, which he did with a slap. It’s too early to correct his behavior right now, besides it would only escalate things. He started to reach for something else, but I got to it before he did; “take another bite”. “I AM!!!” he screamed.

I look at Ron and he answers my puzzled look with, “Did you leave out the fishing line last night?” as I watch him follow and collect the invisible string from all around the room, over chairs and in between chair legs and all around the table.

“I don’t think I did?” was my response. He tells me, “It is everywhere!”, he was NOT happy.

I grab Leon’s wrist as he tries to lunge for yet something else at the other end of the table, “EAT”, I say, and then, “Leon where did you get the fishing line?”

He  says “the drawer on your desk was open“.

I get up and check my desk drawer, which is indeed open and my eyes widen. I think, Oh Crap, and I say, “Leon what did you do with the glue?”, as I realize the lid had been removed from the container that I keep all my super strength glue hidden in.

“Nothing!” he says angrily, and then in response to my stern look, he said, “It doesn’t even work, it’s empty”. So I ask, “well what were you trying to glue?” and again in his angry voice he says, “Nothing, I was just trying to glue a bookmark into my book”, “but it didn’t even work the only thing that got glued was my fingers, but don’t worry I eventually got them unstuck.”;” Wow that must have been scary”, I said. His response was. “I was a little scared, ….at least now I know why they call it CRAZY glue”

I almost laughed, but I kept it in as I went into his room to survey it for any damage and I pick up the scissors on the floor. “so, what were you cutting?” I asked, as I looked for things with holes in it. When Leon gets a pair of scissors in his hands he loses all sence of reason. I worried that it was the bed sheets again or the clothes strewn across the floor. He casually said, “nothing, just my cards.”  I look on the floor, yep, there they were, all cut up into tiny little pieces.

I realize he is out of his seat and standing in his room with me, “Leon, did you finish your breakfast?” He runs back to the table, and starts to shovel the food in his mouth like a madman.

I should be correcting him, telling him to take smaller bites, and to sit in his seat instead of standing there leaning over the table. But I don’t, I just think to myself – eh, at least he’s staying in one place and eating. …and if he choke’s I am right here to do the Heimlich. Then I wonder to myself hmm, do I even now how to do the Heimlich?

Didn’t matter in the end. He was done in a flash and on his way.

I watched him, hop around on one foot and then another. He was worked up, but for no other reason than he just had to move. And move he did. And jump, and twist, and flail…

…and when I see him like this, I know, “he’s just getting his Flutterwackin on” ;

Yup it’s Leon in all his ADHDness, alright. And then some.

I try getting him back on track, and ready for school. He just lashes out! He’s angry, and frustrated, and the tears start to fall.

I get it. He feels like we are on top of him, smothering him, trying to control every action he makes… and the truth is, we are. We are because we have to. We are because if we don’t, it won’t get done. We are because at this very moment he just CAN’T. We are because it is a school day and we have to get him ready for his day, feed him, get him dressed, give him his meds and get him out the door and on the bus so he can have a good day at school. It sounds so simple but it’s not. It’s exhausting…. and a little sad.

The sadness comes after he’s gotten on the bus, it comes when all I can think is thank goodness that’s over (now I don’t have to deal with his ADHDness for at least another 7 hours).

The good thing is, neither does he or his teachers for that matter.

That’s when I realize it’s his teachers that always get to see him when he is at his very best.

After such an exhausting, stressful, anxiety provoking morning,that’s enough to make me jealous and then I think, Thank Goodness for weekends!

Click it… PLEASE

Hi,
I entered Leon in a Cute Kid contest and his photo was selected.
Now I am reaching out to everyone I know; we need votes people! Lots and lots of votes.

Please take a minute to click the link below and vote for Leon – (future Tommy Hilfiger Model).

And if you could help pass the word and ask everyone you know to do the same, we would be ever so grateful.

Thanks!

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.

Ahhh, just another ADHD conversation.

Me: Leon!!!! Why is there a bath towel STUFFED into the toilet bowl!!!!!!!

Leon: What, it’s not my fault! I dropped my glasses in there!

Me: !@#%@#!!!

Ahhh, just another ADHD conversation.

He's just lucky he's so damn beautiful

Getting My Artsy Fartsy On

I love handmade things and I love being creative. My latest obsession in regards to getting my artsy fartsy on is Etsy. For those of you unfamiliar with www.etsy.com I strongly recommend you take a peek. I first discovered Etsy back in 2008 while planning my sister’s baby shower. I was looking for ideas and inspiration, and I found plenty!

Weddings Products are huge on Etsy too. I found tons of inspiration for my sister-in-law’s wedding there.

These are some of the items I’ve made  for Suzie & Eddie’s wedding;

Bride Hanger for the special once in a life time gown

Wedding Signature Board in use.

Wedding Signature Board Personalized with Initials and Wedding Date

Wedding Signature Board close-up

The Toasting Glasses I made especially for Suzie and Edwin

Mr. & Mrs. Chair Signs (which I personally love love love because they can be repurposed after the wedding as wall decoration, mail baskets, etc. )

And the Mr. & Mrs. in person

My favorite creation, the personalized Cake Topper

...and with the date on the back

I was very excited to see it all put together so nicely

One of my New Year’s Resolutions involves me getting my Artsy Fartsy on in 2012. And getting it onto Etsy.

So get ready for some more coming soon

“I LOVE my Feral little child.”

Early in the morning through bleary eyes, I peer out across the sun lit room at my child, and a grin slowly forms on my lips as I think to myself;

I LOVE my Feral little child.”

Sitting cross-legged on the floor wearing only his PJ bottoms, with his fuzzy blanket draped around him like an animal skin of sorts, with his long, wild and crazy hair all messed up and draped over his shoulders; he really does look like a feral child!!

He looked back at me, and I fully expected him to say “Me Leon, You Mommy, Me hunt and gather food, You wait here.” instead I got “Mooooom, I am huuuuungreeeeeey!” To which I replied, “Me Mommy, me tired, go now, ask your father to forage for food”; his reply … “you’re weird!”

Yes, yes I am!

I later opened up my laptop to look up the meaning behind “feral child” , I wanted to be sure I was thinking of the right word. Wikipedia not only spit out the meaning, but provided a picture in example as well:

Oh look!! It’s a picture of my very own sweet child!

It looks just like him!!!  At least I think it does.

It’s fitting though, and not just because he looks like a feral child with his hair all tangled, and mussed up, going in all different directions. But also, because he is a wild child at heart. And I mean that in the best possible way.

He certainly dances to the beat of his own drummer. As I’ve often maintained, he is a strong-willed child with a mind of his own, and once it is made up there is no changing it.

Such as it is with his long luscious locks, which I am happy to say, we have learned to tame (somewhat anyway).

He made up his mind to grow his hair long just short of 2 years ago in January of 2010, I remember the date because I blogged about it here.

It was late in January when he came home all excited about doing the Math-a-thon to raise money for St Jude Children’s’ Hospital and helping other kids his own age, who were sick with cancer. It was on that day that he asked if he could donate his hair to the kids at St. Judes. When we told him he would have to have a lot more hair than what had just recently grown out from his mohawk, he said he didn’t mind at all.

Leon in Disney sporting his blue mohawk

Leon's Hair as it was the day he came home and declared he was donating his hair to a kid like him with cancer

I also told him that it would probably take him a few years before he would have enough to donate. It didn’t phase him one bit. Both Ron and I  were pretty proud of him for wanting to do this, but we also thought it would not last. Boy were we wrong. It’s been two years and he still has an inch or two more to grow before he can donate it. Despite being picked on and teased in summer camp, and consistently being called a  girl by strangers, he is more determined than ever to reach his goal.

We’ve come a long way….

   He is such a beautiful child, it is no wonder strangers call him a girl

In the end it will be so worth it. And that long hair suits him, it suits his personality. And yes he does occasionally look like a feral child, possibly raised by monkeys. It was after all just yesterday that I caught my wild little child in the act of standing on his chair in the pizzeria attempting to swing on the lamp that hung above his table. But no matter how wild my little child gets or looks, he will always be MY little wild child!

“I LOVE my Feral little child.”

And So It Begins….

7:00pm

Telephone -(ring, ring)….                                   
Me: Hello?
Little Girl Voice: Hi, Can I talk to Leon?       
Me: Sure who’s calling?
Little Girl Voice: This is Samantha
Me: Okay Hold on a sec.
Samantha: ok
Leon: Hello?
Samantha:Hi    (….yes I was listening in)
Leon:   Hi (….trying to hide his grin)
Samantha: What are you doing?
Leon: Um, playing Monopoly with my dad
Samantha: Oh, okay I’ll let you go play monopoly
Leon: Wait, why did you call?
Samantha: I just wanted to say Hi
Leon: Hi
Samantha: Hi
………(silence)……..
Leon:  Okay, I guess I’ll see you tomorrow   
Samantha: Okay, bye
Leon: bye (GRIN)
Click

ME:  (suppressed smile)  

Voices in my head:  O-M-G!!!!! How freakin cute!!!!! Leon got his first phone call from a girl!!!! (SQUEEEEEEAL!!!!)

Leon certainly lit up when he heard her voice.  Could it be???? …..Puppy Love???  – tee hee……

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??

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.

Post Navigation

%d bloggers like this: