Just call me Jiji

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

Archive for the tag “Family”

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. 😉

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Too Many Tears in my Ears

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

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

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

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

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

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

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

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

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

THINK SPRING! THINK SPRING! THINK SPRING!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This year has been all too too much!

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

Something is definitely wrong with me!!

Never Say Never…

On the weekends it can be hard to get Leon to spend time AWAY from his video games, but we try our best. He loves to draw, and will often spend time doing that while watching TV. It tends to add up to more screen time than Ron or I are comfortable with. But when the both of us are busy around the house trying to get things done; it is easier to just let him do his thing rather than have to stop what we are doing to make sure he is entertained and out of trouble 😉 .

This weekend we enjoyed the nice warm spring weather, and did manage to get him outdoors for a couple of hours on Saturday, but nothing engages his ADHD brain out there for more than a few minutes at a time. My guess is that there is just TOO MUCH going on around him that finding focus on just one thing is just not possible.

Sunday was beautiful too, but between my migraine and Ron’s aches and pains; none of us got out of the house. By late afternoon I was asleep in the bedroom with curtains drawn and a pillow on my head to drown out any sound or light. That left Ron to deal with Leon for the better part of the day. He actually managed to get Leon away from the screen machines, letting him know that he needed to find something else to do and it could not involve anything with a screen on it.

Leon was surprisingly compliant about it and grabbed a few books out of his room and began to read. Awesome!

He loves to read and likes all kinds of books; chapter books like Goosebumps, Choose Your Own Adventure Books like Journey Under the Sea, Graphic novels like Max Axiom Science Series, but mostly he like reference books like The Big Book of Knowledge from which he can learn all kinds of new and interesting facts. They are all great books!

After reading for a bit Leon brings in “The Big Book of Knowledge” to Ron; opened to pages 26 and 27

The Big Book of Knowledge – pages 26 & 27

 

He points out the passage pictured below and says “Umm, Dad? Is this True???” 

Ron reads it, and tells him, that yes it is true. To which Leon replies; “Sounds Gross!, I am NEVER going to do that!”

**Tee Hee – this kid cracks me up! **

Never say never kiddo… but do wait until you are at least 18 

…and IN LOVE!

Oh and USE A CONDOM!

Gettin’ my Creative Juices Flowin’

I have often heard;

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

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

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

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

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

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

My creative talents have included:

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

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

Badge that "MICKEY" sent to Leon

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

The wedding arch

Close up

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

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

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

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

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

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

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

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

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

Lego Mini Marshmellow heads - real easy to make

Kiera’s 1st Ladybug Birthday

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

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

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

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

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

…plus some creative digital photo editing too.

Basically I am just winging it.

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

First time using a spoon

(btw -gardening is NOT one of my talents)

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

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

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

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

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

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

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

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

Happy Birthday to ME!!

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

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

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

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

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

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

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

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

Happy Birthday to ME!!!    

Reading Between the lines.

For homework today Leon had to use each of his spelling words in a sentence.

This is what he came up with;

1. I’ve got something planned.  ~(Uh-oh)

2. I can’t do it. ~(Phew)

3. I’m obsessed with myths,aliens, and monsters.  ~(He’s obsessed alright)

4. It’s okay I am fine. ~(That’s good to know)

5. I won’t play “Super Smash Bros. Brawl” on the Wii. ~(You won’t??)

6.I’ll play “Mario Kart” on the Wii with Jill. ~(Oh I see what’s happening here)

7. You’ll probably say NO!!!!  ~(It was my first thought)

8. Let’s play it, please, pretty please. ~(Well since you put it that way…)

9. He’s crazy, I’m serious! ~(yes he is seriously crazy)

10. I couldn’t ever hate my mom. ~(I LOVE you too, sweetie)

11. Aren’t you going to play? ~(yes, as soon as your homework is done and your room is clean)

12. I wasn’t here when it happened. ~(Uh-oh, now what happened?)

13.They’ve rigged the game. ~(umm…I got nothin)

14. Shouldn’t you be cleaning, your room!!!  ~(well, shouldn’t YOU?)

15. Don’t play with that! ~( ….things mommy says over and over again???)

 

I think he is trying to tell me something, what do you think??? 

My Valentine, My Superman

Happy Valentine’s Day to All!

….But especially to my husband and my son.

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

 

 

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

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

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

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

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

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

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

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

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

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

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

 

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

Shoveling Snow!!

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

So why do it?

This is why……

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The things we do for our kids!

HAPPY New Year!?!???

Well, I had to say it, didn’t I? This is after all my first post of 2011.

Thing is I’m not feeling’ so Happy New Yearish at the moment. It’s part of why it’s taken me this long to post something. It’s not that there haven’t been any happy occasions, events, or news to post about; there have actually, and I want to share them, especially because some very good things have been happening with Leon; it’s just that, well, I am just too damn tired (and in pain) to even think clearly. And not the I just have so much to do tired either. It’s more like the, just walking from the couch to the bathroom and back has me feeling like all my energy just drained out of me and I can’t move, type of tired.

There is no doubt about it; this winter is really messing with my fibro BIG TIME. Mother Nature and Jack Frost have teamed up to kick my butt!

Here is today’s forecast from the National Weather Center:

Winter Storm Warning

  • Statement as of 9:52 PM EST on January 26, 2011
    … Winter Storm Warning remains in effect until 6 am EST
    Thursday…A Winter Storm Warning remains in effect until 6 am EST Thursday.

* Locations… portions of northeast New Jersey… New York City
and southern Long Island.

* Hazards… heavy snow.

* Accumulations… 8 to 14 inches of snow… with locally higher
amounts possible.

* Winds… north winds of 10 to 20 mph with gusts up to 30 mph are
expected across New York City and northeast New Jersey.

* Timing… a wintry mix of snow… sleet… and freezing rain…
becoming a moderate to heavy snow this evening… and a heavy
snow overnight. Up to a quarter of an inch of ice this evening.

Special Weather Statement

    • Statement as of 1:13 am EST on January 27, 2011
      … Heavy snow will impact Bergen… Bronx… Essex… Fairfield…
      Hudson… Kings (Brooklyn)… Middlesex… Nassau… New Haven… New York
      (Manhattan)… Passaic… Queens… Richmond (Staten Island)…
      Rockland… Suffolk… Union… Westchester and western New London
      counties…At 1257 am EST… National Weather Service Doppler radar was tracking
      a wide band of heavy snow extending from northern Connecticut
      through Long Island and New York City.

Snowfall rates within this band are between 2 to 3 inches per
hour… but could be as high as 4 inches per hour in the heaviest
portions of the band in Nassau… western Suffolk… New Haven and
Middlesex counties.

In addition… gusty winds between 20 and 30 mph with occasional
gusts up to 35 mph will occur causing blowing and drifting
snow….and reducing visibilities to 1/2 mile or less.

Motorists should exercise extreme caution.

A Winter Storm Warning remains in effect for the area.

We’ve already had so many storms so far this New Year that I’ve lost count at this point and it’s only January.  These storms have been so frequent and so on top of each other, the effects of which are unbearable. It’s times like this that I am most aware of my Fibro …obviously!

Last week a friend got an up-close peak into my life with Fibro, when she stopped by to invite Leon and me over and found me curled up in a ball on the couch, with my head resting in Ron’s lap as I wept because the pain was that intense. I think it really took her by surprise. This invisible disability suddenly became visible.  Being the wonderful friend that she is, she took Leon so I didn’t have to worry about him seeing me like that.

I actually felt a bit embarrassed that she had seen me like that.

I know I should not be embarrassed by the situation but it is very rare for someone to see me with that bad of a flare-up, and in that much pain, and THAT vulnerable.

Not that I haven’t had flare-ups before in front of people. It’s just that, well, it isn’t always so blatant. The pain is always there alright, and occasionally someone will comment or make a joke about me walking like a crumpled up old women before I can straighten myself up, but usually it will go unnoticed. But Friday’s flare-up, that was something all together different that was what I usually refer to as a “lost in the pain” flare-up. One that gets so bad that I feel completely lost and consumed in the pain.

And with this icy cold, snowy, storm-filled winter I feel like it is freezing me in time and incapacitating me to the point that I cannot even function in my own life right now. I have been out of commission since this year began.  As a result not only am I suffering but so is my family.

The all over joint pain, headaches, fatigue (serious fatigue), insomnia, and muscle weakness keep me from being able to do normal everyday things, including taking care of my family. The burden then falls on Ron; my dear and wonderful husband. So now his life has been turned upside down too.

Not only does Ron leave the house to work all day, but when he is home he has to take care of the things I can’t.

Much to my dismay and intense gratitude he gets up early with Leon every morning without waking me up. He knows that mornings have always been difficult for me, but right now they are even more so. My insomnia has kept me up till anywhere between 3am and 5am on a regular basis. I am thankful because waking up every morning at 7am and functioning on all cylinders is practically unheard of.  I just wish I could do more in the mornings so Ron could get ready for work stress free.

Ron has to get himself and Leon ready at a time when Leon’s ADHD is at its worst. There always tends to be a battle whether it is about taking a shower, eating his, breakfast or getting dressed for school. I usually wake up to one or the other’s yelling or a phone call telling me, my sister is on her way with my niece, whom I care for while my sister is at work. Although, too often this year I’ve had to send her to my mom’s instead.

As it is I am no longer caring for Nico (my friend’s son), but now my fibro is forcing me to give up more days with Kiera too, making money even scarcer.

While taking care of Kiera can be extremely draining, I at least can nap when I need to, while she does. I just can’t see that being included as a benefit in a real job 😉 , so while money is scarce, I am lucky that my sister needs my help. The major downside then falls to Leon and Ron again.

Generally while caring for Kiera or any child, one would think I could keep up with the house work since I am home anyway. Unfortunately that just isn’t always the case, and right now because of the intensity of my flare -up and especially because of how long it has been lasting, there just isn’t any relief long enough for me to catch up on my housefrau duties. It’s embarrassing!

What is worse, is that rather than let it all pile up, Ron jumps in and picks up the slack. It makes me feel so guilty, because I can see it is taking a toll on him.  The getting up with Leon, and battling him to get ready for school while preparing his breakfast and packing up his lunch, and sticking him on the bus; then he has his job to contend with; only to come home and have to contend with me, who is thoroughly exhausted and mostly immobile from the pain and Leon whose meds have worn off and is talking a mile a minute, bouncing off the furniture, and vary needy at this time of the day.

On my normal days, flare-up or not I would have at least pushed myself  to clean up after the day’s activities, get the dishes done, have Leon’s homework done, fed him and ready for bed by the time Ron got home so that he could at least enjoy himself with their ‘Daddy and Leon bedtime routine’. I’ll be honest, I rarely get all of that done, especially during flare-ups, but I do my very best and depending on the severity of the day I have gotten quite a bit of it done. But right now it’s as if my tush has been glued to either the couch or my bed. Basically I’ve been bedridden (or couch-ridden as it were) since the year began, and if the weather keeps up this way I don’t see it getting any better anytime soon.

I worry about the strain it puts on Ron. Add to that the struggles we face financially at the beginning of each year because of how our medical insurance is structured. Between Leon’s ADHD/ODD meds and my Fibro /ADD meds and our regular doctor visits, we have to come up with a lot of cash in a very short amount of time because we have a $2500.00 deductable to meet. That’s not an easy thing to do when living paycheck to paycheck. This is the time of year when our bills pile up. So on top of the strain my fibro puts on Ron he has this to deal with. Now add to it the fact that Ron’s car has died and can no longer be driven, so he has to use my van until we can afford a new car. At least with me pretty much being bed-ridden I can do without the van for now.

The guilt and the depression that comes with it weigh very heavily on me. I feel responsible for Ron’s stress, and I worry about his health.

So with all that, it hasn’t felt very Happy New Yearish   ….yet

As I said before there have been a few highlights to the year so far, involving Leon, so not all is lost.

But that will have to wait for another day.

HAPPY NEW YEAR!!

A Message from Santa

 

Dear Jill,

Hello from the North Pole. I bet you are surprised to be hearing from me, here, on your blog. I hope you don’t mind me posting this note on your blog, but I wanted to make sure that your son Leon get’s my message. And who better to trust with such an important task then his own mother?  You must be extremely proud of him. He has come such a long way. I’ve been keeping my eye on him and I have to say Mrs. Claus and I are very proud of him too. Not only was his report card filled with 3’s and 4’s but I heard from my elves today, that he just won 1st place in the category of photography for his school in the PTA Reflections Contest. I hope he saves the Target gift card he won for something really wonderful. 

He is maturing very well and becoming such a responsible young boy. I really enjoy seeing how well he does his homework right after school. I would urge him to slow down a bit though, it is important to take time and work carefully when doing school work. I have noticed some improvement in his handwriting too! There is more work to be done, but I have every confidence in him. I’ve seen him do great things.

He is taking after you artistically, isn’t he? The combination of his wonderful imagination and the talent he is showing  when he draws make for some beautiful and creative artwork. I especially like the winter scene he drew, with me in my sleigh sailing through the sky. That one is by far the best work of art I have seen him do so far. You really should add it to the art gallery in your livingroom if he will allow you to. 

He also has the potential to be a great musician too, if only he would practice his instruments. He seems to be doing very well in orchestra with his cello, according to his teacher, just  imagine how good he would be if he actually practiced, I do hope you will urge him to practice! And not just his cello but also the guitar too. Did you know he wrote me a letter asking for a piano keyboard AND an electric guitar, along with some Lego and an Xbox? There is only so much I can do. Between you and me I think the electric guitar should wait a bit. I’d like to see him practice the instruments he is already learning more often and on a regular basis before I get him the electric guitar. Please tell him I said so.

He will be getting at least one thing he asked for in his letter under the tree, on Christmas morning as well as a few other things that the elves and I have overheard him talking about. And I will admit that we do check out his Universal Wishlist on Amazon regularly. What a smart thing to do. Kudos to you Jill, for making things a bit easier for folks.

There is something else I have noticed about Leon lately and I am very glad to see it. I see him being even more caring and generous with others and in life, than he has been in the past. It is truly wonderful to see Leon getting into the true spirit of Christmas. As you know, Christmas is not about getting presents, it is instead about giving, just as God gave us his son, Jesus Christ.

Leon has a lot to give this world and he is off to a wonderful start.

The message I would like you to pass on to him is in this link, I was able to record a video just  for him through my portable North Pole, please have him watch it; 

 http://www.portablenorthpole.tv/watch/guest/i0o2DZwhRB515cEvAUZugg

And don’t you worry Jill, I haven’t forgotten about you either. I received your letter too. It was very unique of you to write your letter to me on your blog, although in this new age of technology it isn’t surprising, you wouldn’t believe all the tweets I get, and don’t get me started on all the “Dear Santa” Facebook status stuff.

Regarding the wishlist in your letter, I am not so sure I can do anything about the time thing, you might want to try Father Time, but I don’t think he takes requests. All I have to offer you is advice; if you want more time in the day to have to yourself , you are going to have to make it. Try not to be so accommodating. It really is okay to say no every once in a while and take care of yourself first.

The will-power to continue to lose weight is already within you, so I will work on sending the soft-serve calorie-free, fat-free ice-cream your way. I’ll have to remind the elves to pick up some dry ice, before we depart the North Pole on Friday.  But incase we can’t get Jack Frost to share, rest assured you will find a gift under the tree from Santa. Afterall while looking under Leon’s name for his wishlist on Amazon.com, I looked up your name, and Ron’s too.

As far as the last thing on your list in your letter to me, that too, is something you already have. God has provided you with the perfect family just for you. Just as he made Ron for you; he made you for Ron. And then he answered your prayers and gave you Leon.  Praise God always and anything you could ever need will be yours!

Jesus is the Reason for the Season

                                                                                            Love,

                                                                                                Santa

P.S. I actually prefer Kahlua and cream with my cookies but I don’t drink and fly, so skim milk will be just fine. 

Dear Santa,

 

Dear Santa,

I have been very, very good this year!

I spent much of my time this year helping out friends and family, planning weddings and parties, taking care of other people’s children and my own, being a personal shopper, researching everything from ADHD to Las Vegas weddings to Sensory Processing Disorder, driving my kid all over town to swimming, and guitar lessons, and cub scouts; correcting homework, volunteering in the PTA, and so, so, so much more.  So for Christmas this year I’d like to ask for a bit more time in each day to just regroup and take a moment just for me.

I also joined Jenny Craig this year and lost 40 lbs, and even though I gained back 10lbs of it, I think that’s still pretty good. So I would also like to ask for a bit more will-power so I can lose another 40+ lbs. And if you could manage it, some calorie free, fat free, soft serve ice cream that doesn’t taste like air or cost an arm and a leg would be GREAT!

But the thing I’d most like to see by the tree this Christmas, is my family happily thriving, and enjoying each other and this wonderful life that God has given us.  

                                                                               Love,

                                                                                   Jill xoxo

P.S. Do you prefer whole milk or skim with your cookies?  

An Open Letter To Those Without Invisible Disability Or Chronic Illness

While surfing the web I caught sight of this really wonderful letter that expresses much of what I feel  and go through. So I wanted to pass this on.

My comments are in purple, clarifying how I feel personally about what is being said in this letter and how it pertains to me.

An Open Letter To Those Without Invisible Disability Or Chronic Illness

 … by Ricky Buchanan

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

I to try to be carefull in what I do. Somedays I am doing just fine, while others I have to struggle to get through my day. My mood can reflect that. I don’t mean to let it get in the way of things, but I am only human.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Amen to that. I sometimes find it difficult to answer the “how are you doing?” question. The typical answer for most people would be “I am fine”. Me, there is no typical. I could be dealing with major pain all throughout my entire body or it could be minor discomfort from a dulled pain in my joints. The pain is almost always present, but I have dealt with it for so long that I’ve learned to endure the minor aches and pains and push through the major ones. So, if you ask me how I am doing, fine doesn’t really cover it. Fact is, I could very well be having a grad old-time and enjoying myself, and all the while the pain, fatigue, and discomfort are still right there beneath the surface. So on the one hand the part of me that if enjoying whatever it is I am doing, but on the other hand, if I stop and focus just on the pain, I am not doing well at all.   

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

While I have had days like this, where I have to sit or lie down even every 15 to 20 minutes or so because whatever it was I was trying to accomplish has left me exhausted and fatigued, it isn’t a daily occurence. Days like that tend to happen when I have a lot going on and I push myself. It generally occurs around the holidays or in planning something big like a party or a trip. When I do have these days it is usually in private. I don’t like people to see that part of my illness. I guess I worry about being judged as lazy or weak, or incapable.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

All of these are true for me as well, especially the thinking and being social part. Fibro fog and focusing issues dull my senses and thinking straight isn’t always an option. If I am not answering the phone or accepting invitations to go out, it’s because I just can’t; it’s not personal

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last-minute, if this happens please do not take it personally.

I have had my share of days like this as well where just getting to the bathroom is a feat in itself. Mostly I can manage to function just fine with minimal pain (but pain none the less) through out the day, but when evening hits that’s when you will see the difficulties the day brought with it. That’s when you will see me struggling just to get off the couch and shuffling across the room stooped over in pain to get the bathroom. 

I used to ignore the need to cancel plans and I would go anyway, and usually end up paying for it for the next day or two. But lately I have found that the need to cancel happens more often now that I am getting older – I tend to  listen to my body more now and choose to take care of myself better, so if I’ve canceled and been a no-show on you; now you know why. 

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated – if I could possibly do it that, I would.

My disability does not keep me bedridden, but I do have good days and bad days, and quite often my bad days can lay me out for 2 to 4 days in any given week. Certain times of the year are worse than others depending on the stressors. Stressors include weather, seasons changing, being over-zealous on one of my ‘good’ days, emotional or mental stress, hormone spike, among other things. So if I say I am not up to it… trust me I am not up to it.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

This is something I know all too well! I am famous for ‘forgetting’ to take my medications and for pushing the envelope on those ‘good days’. Quite often it is because I am involved in something far more enjoyable. I am very guilty when it comes to pretending I am a well person. this goes back to not confusing happy with healthy.  I often have to remind myself that just because I feel well does not mean I am not sick.  

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

I get this. So often people ask, so what are you doing for your fibro? Well, I am living with it. There is no cure, there is only managing it. I take my meds, I’ve started walking regularly, and I keep my chin up.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

With everything that I have gone through, first with constantly being told that there was nothing wrong with me or that it was all in my head (this is going back 17 years when Fibromyalgia was considered – not a real condition – by many doctors); and then going through all the trial and error of finding the right prescription cocktail that would not make me feel worse; I am reluctant to try something new. I did however switch to Lyrica about 6 months or so ago and it is work to help manage it a bit better.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

I don’t mind the suggestions at all as long as there is no expectation that I will run right out and try it. Chasing after this disorder is time-consuming and exhausting and in my eyes a bit of a waste of time. If there was a cure, something that would make it go away entirely and permanently then hell yeah, I’d be right on top of that. But all there is, is management and that is what I am doing. As long as I have found something that works that I can tolerate i am going to stick with it until it does not work anymore. i rather be living than chasing down my illness. 

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

But most importantly, I need you to understand me.

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