Just call me Jiji

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

Archive for the category “Just Jiji”

Hunker Down

We were told to “hunker down”, Sandy was on her way. It was going to land in Jersey, and New York was going to feel its impact.

On Saturday night to avoid Sandy’s wrath, we celebrated Halloween early at the Shyne’s. They are known in the neighborhood for their amazing decorations and interactive costumed players, including a chainsaw wielding Michael Meyers and a chef that serves brains, heart, and worms to willing foodies.

To avoid Sandy’s wrath, we celebrated Halloween early at the Shyne’s


Chef Nancy and her Roach Farm

Mmm Dessert

I am glad they decided to do it. I just love dressing up. It is what I look forward to every Halloween, and I was especially eager to try out a new make up technique I had learned. What do you think?  I am pretty impressed with myself. 🙂

On the following morning, Sunday Oct. 28, 2012,  it was time to get serious and hunker down. Sandy was definitely on her way!!

I imagine that most people  stayed glued to the local TV station all day long. I know I did. Ron helped our neighbors across the street breakdown and secure the holiday decorations that we had just enjoyed the night before.

We ran out at the last minute to pick up some water, fruit, dry goods, batteries, etc. We filled the gas tank and headed back home to watch Sandy’s approach on TV.  It dawned on me that we were taking this (warning) a bit more seriously than we had in the past.

We live in Nassau County on Long Island. We were warned that the south shore in particular was going to get the brunt of it on Long Island. The warnings made comparisons to Hurricane Irene and how this hurricane was going to be worse than that. We were to expect high winds, flooding, and power outages through out NYC and Long Island.

We’ve heard these warnings before, and not that we doubted that Long Island was going to get hit, but for the most part, because we (Ron, Leon & I) live in Central Nassau, we don’t expect to get hit as hard as the north and south shores. Most flooding happens at the shore, and winds have felled a couple of trees and knocked out some lights for a day or two here where we live, but in comparison to the damage the shore gets we barely feel it.

Last year Hurricane Irene got New York’s attention big time, and while it did hit hard, there were some areas of New York that did not get as much of a beating as was expected.

But, that morning, the day Hurricane Sandy was due to hit, the air felt different. The news reports  were much more urgent than I remember storm watches and warnings ever being in the past; evacuations were being ordered and shelters were popping up all over the place, and talk of widespread power outages were practically guaranteeing we would all be in the dark for a few days.  Recorded messages from the town came in on our phones listing items that we should keep at the ready. Yes, this time I was taking the warnings a bit more seriously.

It was a windy day from the get-go, and as the day wore on and it got later the winds got stronger. At the supermarket I watched 3 shopping carts speed past me with out a driver, so to speak. I felt the push of the wind on my back. The clouds darkened the sky, they seemed somehow heavier, like they were being weighed down. I could feel it in my body.  Then came the heavy rain (and a heavy flare-up). Lots and lots of rain.

By this time we were all safe and comfy in our home. There was nothing else to do but wait till it was over, just like we did during past  storms and even hurricane Irene. We could hear the rain beating against the house, and we heard the winds howling past us.  But I felt secure enough, after all as long as we stayed inside, the storm wasn’t going to touch us.

Then I hear Leon yell for us to “come quick; my bed and all my books are wet”. We discovered that the ceiling in his room just above his bed had a crack in it and was leaking.  Ron grabbed a bucket and set it down under the leak; what more could he do?

Leon, was distraught because now all his books were ruined. A meltdown ensued. It was clear to me that the anxiety of the storm was getting to him. Throughout the day, as we watched the news reports or listened to the radio, I discussed some of the things we might face during the storm with Leon. Leon does not like surprises or sudden unexpected changes, so preparing him ahead of time  was necessarily. But the leak was not expected at all.

 As I held him while he cried over the loss of his precious books, I reminded him that we had talked about the storm and how it could cause damages. He interrupted me with “yea, but you didn’t tell me it would rain in my room!”.

It was true, I did not tell him it would rain in his room. I did however prepare him for the power to go out, and soon after we discovered the leak, the power did go out at 6:31pm. Ron gave Leon his own wind up flashlight while, Ron and I got out the candles.

Some how with the lights out, the howling of the wind seemed louder, and the moaning and groaning and creaking of this old house straining against the 80 mph gusts of wind became more obvious. Poor Leon jumped at each new sound. Once we had sufficient light in the kitchen, we huddled around the kitchen table together. We read,and played games to pass the time and keep Leon’s mind off of the sudden noises. And we listened to the local radio station report on what was happening outside our cozy candle lit kitchen at the same time.

Every so often I could feel the house shift, it was bracing itself against the strong gusts of wind that the radio and TV news had promised. There were loud noises that came from outside. There was crashing and banging and booming sounds, and bursts of light in the sky that I mistook for lightning. I eventually learned (over the radio) that the burst of light was not in fact lightning, but transformers blowing out all around us, hence the widespread power outages.

It was getting really scary, and not just for Leon, I was getting scared too. I had never experienced something like this before. Now I was jumping at every sound this house was making too. Did I mention it is old? Yes, very old; 120 years old, old. Which means tons of creaking and moaning and groaning. And then there were the external sounds of things falling or flying or god knows what. Now I was getting anxious myself. There was a loud sound that came from the front of the house. We peered out the window into the normally well-lit street, now buried in darkness to see what had made the sound. It was like a cracking sound followed by a crashing sound. Ron went out to get a closer look. A large limb from a tree directly in front of our house had fallen down onto our gate and taken two wires that were connected to the house down with it.

Peering out the window to see what hit the house

The radio was reporting live, about all the dreadful things that was happening all around the Island and in NYC.

Hurricane Sandy Building Collapse 2012 NYC 3841

Front facade building collapse

Fire Island during Hurricane Sandy

The whole front facade of a building in Manhattan just crumbling to the ground, exposing the apartments inside, trees and electrical lines falling on homes, people who refused to obey the order to evacuate, now needing rescuing . Yeah I was getting a bit anxious myself. But I surely did not want Leon to see me shaken.

To keep from totally falling apart I felt I had to keep busy doing something. I made Ron run all over the house, collecting items to pack as a go bag, find the fire extinguishers, put the shoes by the door;  while I collected my portable hard drives and my engagement ring and wrote out ID cards for each of us detailing who we were and who to contact in case of emergency. I then made sure Leon and Ron put them in their pockets, as did I.

My thinking was if something falls on the house or the wires spark a fire, and we get separated  they (rescue workers)would know who to find for us.

….Okay so I get overly cautious when I am frightened. While this was going on in the house a few fire trucks pulled up outside the house. As I watched out the front window a fireman motioned for me to meet him at the door. When we opened the door he informed us that the wire that was pulled down from our house by the tree limb was laying across our metal fence and a fire hydrant.

We were instructed to stay in the house till it was determined whether or not the wire was live. Ron was convinced that it was the cable or phone line. The fireman said it may be, but to be sure, stay inside. If we must leave the house, make sure we had on rubber sole shoes and stayed off the grass, only walk on the walkway.

I tried getting in touch with my mom and my sister by cell phone. When the power went out, so did our home phone and internet. Our only choice for communication was the cell phone. But it really was no choice at all. There was no getting through to anyone. And if I did get through, the call would drop immediately. Eventually I got my sister via text message. She couldn’t get in touch with my mom either. I was getting worried because she was home alone. I was also kicking myself for not being more forceful about her coming to stay with us. My sister was doing the same.  Mom was very adamant about staying home. She’s quite stubborn when she wants to be.

That night I had such a hard time getting to sleep, all I could do was watch the two trees in our front yard sway back and forth in the wind and the utility pole across the street pull the wires attached to our house taut  and then slack  again.  Eventually my eyelids were too heavy and I no longer could stay awake.

The next morning, Oct. 29th  in Sandy Aftermath, our power was still out, no electricity, no heat, no hot water, no phones, and no internet. Cell phones were not getting good reception either.

We surveyed the damage outside and are thankful that it wasn’t worse. Aside from the branch taking down a wire, Sandy took a few shingles off the roof, some siding and part of the gutter.

Shingles, shingles everywhere

Down with the gutter

Branches downed

Anyone lose an antenna?

The side of our house

That’s where the siding went

The planter is made of cement & oh so heavy

One of the fences that collapsed

We checked on our friends as we drove around our neighborhood assessing the damage. It was unbelievable to see so many trees down. It looked as if they were just plucked out of the ground roots and all and left there for us to clean up. Some of them ripped up the side-walk and even the road in some cases.

These are pictures of the damage found in my neighborhood




Ron managed to get in touch with his parents on his cell. Thankfully they were safe, and they hadn’t lost electricity. While Ron stayed at home to wait for his parents to bring us their generator (insert happy dance here), I took Leon with me to see how my sister and her family were doing before heading on to check on my mom. Both my sister and my mom had also lost power like most of the rest of Long Island.  Of the three of us my sister’s home got hit the hardest, with tree branches all over the yard.

This is my sister’s home;


Even little Kiera helped with the clean up

Mom admitted that she was very afraid during the storm, but she still insisted on staying at home on her own. Before leaving her, I wanted to make sure she had a few things. I ventured out looking for a battery operated radio and batteries. Five stores and 2 hours later I still had no luck finding what I was looking for. By the time I got back to my mom’s house to deliver the bad news, her power was back on. Go figure.

  I was hot to get home before dark. It was scary enough driving from town to town with no working traffic lights during the day, I certainly did not want to drive home in the dark with out traffic lights to regulate traffic.

As anticipated our power was still out. Being without electricity, heat, and hot water is no picnic. But it is doable. It’s the lack of phone, TV or internet that had me itching to find a hotspot. We did have the radio to report on what was going on out there. But I wanted to be able to see what was going on and I hated not being able to communicate with my mom or sister. I, of course, wasn’t the only one missing technology. But, for as much as Leon complained about being bored because there was no TV or internet, we did have a lot of fun as a family doing crafts and playing games.  And the added bonus for Leon was that school was closed.

There was some worry among the kids that Halloween would be cancelled this year. The concern being that there were too many trees down and sidewalks ripped up. A group of us parents decided to get the kids all together for trick or treating keeping safety first in mind at all times. We were not going to let Sandy ruin our children’s day! The kids were happy and so were we.

As luck would have it, by the time we got back from trick or treating on Wednesday the house was all lit up. Hooray we had electricity and heat and hot water!! We still did not have phone or internet but we only need wait one more day before we were connected again. Boy were we happy to have power again.

We were one of the lucky ones. Sure we lost power for 4 days, didn’t have heat or hot water, and could not communicate with our family. But there are so many who are far worse off than we were. Far, far worse than even some of my neighbors or my sister’s family; who are still in the dark even now. We’ve been able to help out our next door neighbor by sharing our electricity via an extension cord. At least they can plug in their fridge. And my sister, brother-in-law, and cousin  are staying with my mom, to avoid the cold. Let’s just hope they don’t drive each other insane. They are lucky too.

Being without electricity, TV, internet, etc. can really isolate you from what is going on in the rest of the world. When we were without power I had no idea how bad things were. Granted we had the radio, but it didn’t sink in till I  was able to  really look at what Sandy had done.   So many people left homeless, with all their mementos and memories washed away. People have lost home, cars, furniture, clothing, everything. After seeing all of this, I know I have no cause to complain about the things that were going wrong in my life.

It is heartbreaking to see how badly other parts of New York have been hit. I feel so terrible for those people who have lost everything. I just could not imagine the heartbreak they are going through right now. My prayers go out to them.

There isn’t much I can do financially to help. But I will donate clothing and whatever else I can to help.  Another thing I can do is at least help spread the word. Please do what you can to help these people who have had there lives turned upside down. Make a donation if you can to the Red Cross and pass the word on. There are people out there who are just like you and me, who really need your help.

  Stay safe, and stay positive.

Duck Tape!!! Bigger on the Inside!

It’s Me, Jiji

It’s me Jiji;

I must apologize for my lack of involvement here this summer. Aside from our Annual July Potluck BBQ and Leons Locks for St. Jude Kids event the rest of the summer has been a bit slow going, so far. With Leon going to camp all day long and me burying my nose into every article and book, that I can find about Aspergers and High Functioning Autism; as well as looking for ways to get organized and reclaim my home, my family, and my life; it leaves very little time to do many other extra curricular activities. And for right now blogging falls into the category of extra curricular activities.

It’s not that I don’t want to write or that I don’t have much to write about, I do! It’s just that, aside from my hands burning with pain when I do write, I have had to devote my time to rearranging  some of my priorities first and to take care of me and my family.

I’ve always been a very wordy writer; with a tendency to go on and on about whatever subject it is I am writing about.  I do really enjoy writing, but because of the pain in my hands and my lack of available time; it is my intention to try to limit the length of my posts from now on.













I am looking forward to putting my thoughts and ideas done on paper… err I mean on the screen…


Goosebumps and Tears

This video moved me to goosebumps and tears; I just had to share.



Edited to add the finished product ;


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

This child was a gift in my life, and all I want for him is the gift of a truly happy life. Is that too much to ask?

When I think of my one and only child; and I picture him in my mind’s eye, the first word that comes to me is BEAUTIFUL!

Yes, it is true, he is a looker, but that is not where his beauty lies. It comes from his heart and from his mind.

His beauty stems from his sensitive soul that can see another child in need of some thing; that drives him to attain that same something for another child. His wonderful heart that has devoted 4 years of his life to growing his hair out because he saw a little girl in a St. Jude Children’s Hospital video openly express her hope that someone would donate hair so she could have a wig.  In his brave heart that has courageously endured the taunts and the teasing by some of his peers, as well as being repeatedly and mistakenly referred to as a girl, by strangers. His caring heart and sensitive soul that loves all living things so much so, that spiders are not for squashing, they are for setting free outside in the yard.

His beauty lies also in his wondrous mind that is so much smarter than his dear old mother’s; his mind, that captures the ear of those around him with words that would otherwise belong to someone much older than him. It is in his beautiful mind that imagines the most wonderful possibilities; and gives birth to ideas that other 9 year olds would not of yet conceived of. His mind that is so analytic and technical  and literal that he surprises and intrigues most adults around him. His mind that I am told is gifted with an IQ in the very superior range, that should be enriched and encouraged to grow in knowledge and interest


When I think of my little “Alphabet Boy” with his ADHD/ODD/SPD/LMNOP, the second word that comes to mind is SAD!

This child with all his exuberance; wicked intelligence; and killer smile should not be this unhappy with life or with himself. But he is. This beautiful boy with his gifted mind and his beautiful and sensitive heart is also a very sad and lonely little boy, and it breaks my heart into a billion little pieces.

He is not like most other 9 year olds. He’s different, and quirky, and weird. I have often said he marches to the beat of his own drum. He is as  unique, as an individual can be. And I love him in all his uniqueness. But I weep for him too. Because his differences make him feel so badly about himself.


Recently, we have had so new revelations about Leon and what makes him the way he is, Hopefully we can find some answers, and perhaps show Leon how to love himself as much as we love him.

A Day in the Life of…FibroFlareGirl

AKA….. Test Results and Other Ramblings


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

4 pills with breakfast -YUMM


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


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 🙂


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!} 

Slow down.

I got a call from my 8 year old today, he sounded so much older.
He’s camping with his grandparents and having a perfectly wonderful time. Hearing him over the phone sounding so mature makes me miss him more some how. I don’t want him to grow up too quickly. What if I blink and I miss something?

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!

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!


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!!

I Gots Skills

In a previous post; Gettin’ my Creative Juices Flowin’ I wrote about my various talents, and things I have tried my hand at, with the latest thing being wood burning.

I recently took up wood burning for the sake of my sister, Suzy. She is getting married in May, and asked me to use my creativity to make a few things for her. She had some basic ideas of what she was looking for and showed me a few pictures of things she had seen on Etsy.com. But she pretty much gave me carte blanc to come up with my own vision of things. I toured Etsy, which by the way is now my favorite artsy-fartsy site, and I found inspiration and ideas all over the place.

My self-imposed deadline was this past Sunday for her Bridal Shower. I managed to get everything done that I had wanted to (thanks to a few 3am bedtime). As usual I pushed myself to accomplish a bit more than necessary. It was important for me to put so much into it because I want Suzy to know how much she means to me. She may be Ron’s sister by birth, but I have known her since she was 15 years old, and I have watched her grow into an amazing young woman that I am proud to call her my sister too.

It was her intent to reimburse me for any purchases I needed to make for these creations. But I refuse to accept any reimbursement, I want to make this my gift to her (and Eddie) from one sister to another.

I am so happy for the both of them. And I wish them the best that life and marriage has to offer them.

As a result of her asking me to do this; she has unknowingly given me a gift as well. Because of her, my enjoyment of; and desire to; create art, has once again been rekindled. I find myself sketching new ideas and getting inspiration from the things around me. I have really enjoyed being creative again.

I am also pretty proud of the outcome on most of what I have made. I wanted to give her options so I made different versions of the items she wanted for variety.

These are the his and her hangers she had asked for. She really only asked that I somehow write the word Bride and Groom on these hangers that she provided to me. I wanted to give her the option of dressing them up with the flower I had made using two other flowers and Swarofski Crystals and the bow tie I fashioned with cardboard and black ribbon after I simply woodburned the hangers;

Bride Hanger - wedding dress photo prop

Bride & Groom Hangers – wedding attire photo

Another item that she had asked me to make was a cake topper. She had seen my very first attempt at wood burning a tree design and had decided that she had wanted it as her cake topper. Since it was my very first attempt, and I wasn’t happy with all the mistakes I had made I refused to let her have it. Not only was it a scrap copy it was also on scrap wood. This is the initial piece she had seen;

It was the smaller one she was interested in using, but I really did not like how it came out. I was also concerned with how 1 dimensional it would be.I made a new one similar to this on a better piece of wood; I liked the way it came out;

The heart can be personalized with the couples initials or the date.

And although I am pleased with the art, it just seems so flat for a cake topper. So I came up with the bright idea that I would have to make a woodcarving of a tree to make it more 3-dimensional. Yes, I did say wood carving. Here are 2 I managed to make without nicking a major artery in the process.

This second one is left plain in case she prefers a lighter color;

The tops of the trees are interchangeable. Personally I like the balls on the top, but the tree slice can be further personalized. Perhaps with a simple scroll design, green leaves, or their names in a heart in the upper portion and the year in the smaller heart on the tree trunk. Suzy also asked me to make Mr. & Mrs chair signs.  These are similar to ones I have seen on Etsy;

I managed to come across these really great baskets and I loved the idea that I could make the chair signs and then they could repurpose them as his and hers letter sorter;

I burned the wooden letters and adhered them to the baskets, I wanted to get dried lavender stalks but I didn’t have enough time, so I used silks instead;

I also am going to make a signature mat for them. Suzy order a tree slice for me to do it on. But just for practice i made these;

And I did this second one too;

Which I am very proud of. I took inspiration from the wedding invitation. I decided to turn this into a cute sign for them;

No that isn’t a misspelling, their last name is/will be Mora.I also made these;

And the wishing well for the shower too;

But my favorite is this;

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