Just call me Jiji

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

Archive for the tag “disability”

From One Differently- Abled Child to Another

My Wild Child

Leon is 9 years old and he has Asperger Syndrome /High Functioning Autism. He is an extremely  bright boy with big ideas and an even  bigger heart.

One of  the many wonderful characteristic of Asperger’s is Determination, and he’s got  plenty of that.  When Leon has is heart set on something, he cannot be derailed. When Leon was in 1st grade, he watched a video presentation in school about St. Judes Children’s Hospital, on that day he decided he wanted to help the kids of St. Judes, because, in his words, “I can help kids who are really, really sick” .  He then told me he wanted to cut his hair

In 2008, sporting his blue mohawk

(which was  Mohawk  at the time). When I asked him why, he said “because, I want to donate it to the ones that are bald”.

  Leon has not cut his hair since and that was back in 2008. In that time he has been teased, mocked, and bullied by other kids. He is often mistaken for a girl. But Leon takes it all in stride. He simply explains to those patient enough to listen, “ I am not a girl, I am a boy. I am  just growing my hair to donate to St. Judes Kids”.

In 2011, we found out that there was no guarantee that his donated hair would go to a  St. Judes Child. In fact it was unlikely. This did not sit well with Leon at all. He was very upset in fact. Although he knew that his hair would still go to a good cause, it was the children of St. Judes and their story that had touched his heart.

This is why he began hosting the “Leon’s Locks for St. Judes Kids Fundraiser”. It was important to him that he still do something for St. Judes Kids. Leon set his goal quite high, at $5000. We know it is a long shot but we have always taught him to reach for the stars and to believe in himself.

We worked together as a family to get donations where ever we could. His father and I reached out to our contacts via email, Facebook, and this website.  We also had cards made up for Leon to give out when the opportunity presented itself.

Leon’s Story Card

He gave them out to friends and their parents, at birthday parties, and communions. We carried them with us where ever we went. We even had a pin and a T-shirt made that said “ask me about my hair”.

Then when asked he could tell his story and give out a card. This worked out very well, because Leon did not always feel comfortable approaching people he did not know. But when asked he was always more than happy to tell his story about why his hair was so long. He spoke to people on the train, in restaurants, and we even hung out in Times Square for a while, giving out information cards.

Times Square NYC

 

.Both his dad and I are very proud of how much bravery and confidence he has shown when approaching and being approached by others. We love how much partaking in this, has helped him improve on his social skills, something that is greatly hindered by his Asperger Syndrome.

Being a part of this fundraiser has helped us grow in so many ways, both individually, and together as a family.

Tomorrow, July 7 2012, we will celebrate with our friends and family at our Annual BBQ that we have every year in July. At some point in the evening Leon will cut his hair for donation to “Locks of Love”. And while we  are happy to report that since Leon began this fundraiser in March 2012 , he has raised $1385.00;  we hope to continue in spreading the word and getting more people to donate to his fundraiser for St Judes Children’s Research Hospital.

Folks can donate with a credit card via this link https://waystohelp.stjude.org/sjVPortal/public/event/page/displayEventPage.do?sectionStyle=subMenuFour&eventId=310924&programId=2002

Please forward and share this story as much as possible!!

Leon’s self portrait

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Crap! I think I’m broken again

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yup, I am broken all right!

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

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

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

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

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

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

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

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

Nine Years Old and Already Breaking Hearts

A couple of days ago Leon came home from school and I could tell he wasn’t himself. Well not his, get off the bus and get the homework done right away, to get it out-of-the-way, so he can watch TV and play, self.

His ODD was in full force and rearing its ugly head. Everything was an argument or a fight, he asked for things he knew I would disagree to and then would have a huge fit when he would hear the word no. He lashed out, got fresh, and as a result he had to suffer the consequences of his actions. The consequences in this case being no video games for the rest of the day, including his newest addition to his collection; Skylanders.  He had just gotten it for his birthday the week before and was becoming obsessive about it. I felt he needed a break from it. Which he did. But the storm that came after that, resulted in a huge temper tantrum. There was yelling and crying, and screaming and runny noses, and soberly “i hate you’s”, and “i hate myself”, and “i just want to be left alone”, and screaming into pillows, and pinching and scratching at himself, and me grabbing a hold of him in my arms to cradle him and love him and keep him from physically hurting himself.

Phew! I see more and more of myself in this child every day! Memories and things long forgotten and tucked away in the far back of my mind. And now as I watch him go through so many of the things I went through in my own childhood (things that had made me feel “wrong”); and now to see him go through it, and not know how to deal with the intense emotions that come with it,  just kills me. I only hope that I can parlay my understanding and feelings to him based on what I have already gone through and cushion the blow even just a little. Let him know, he is NOT alone, there are others who understand, who get it, who have the same difficulties and differences.

This poor child carries the strain of always having to restrain and keep in check his natural ADHD impulses to do his own thing, his own way, while he is in school all day and for just long enough after school to get his homework done. The meds that he is on helps him to do that, and for all intense purposes work great, but some days are a bit more challenging than others. Sometimes the smallest monkey wrench puts a crimp in his day and throws him completely off course. It could be anything, maybe his schedule was unexpectedly interrupted, maybe he isn’t feeling well or maybe someone said or did something that he just can’t get off of his mind. What ever it is, it can cause the storm described above…

and below….

Leon: MOM! I am having a REALLY bad day! All I want is to come home and relax by playing my new game and you won’t even let me, And I am just really really stressed (pleading now, with tears running down his cheeks) PLEEEASE let me play with my Skylanders I just need to forget today happened!! Pleease!!! I DON’T WANT to go to fencing, I just want to RELAX!!! and I can’t do that if I can’t play my game!!

ME: (cradling my poor sobbing little boy whose trying desperately to sway me into changing my mind about taking away his video game privileges as a result of consequential behavior) I know you are upset, Leon. I am sorry that this hurts your feelings, but you know the rules if you get nasty with mommy you lose certain privileges and telling me you feel too sick to go fencing but just fine to play video games is not going to cut it.

Leon: I’m sooorrrrrry! I won’t do it again. Pllllllleeeeeeaaaassssseeee can I play my game. I had a bad day and besides I got some bad news at school and I am stressed about it! I just neeeeeeeeeed to playayayayay my GAME!

ME: What bad news? Do you want to tell me about it.

Leon: I just don’t want to talk about it OKAY!!! (screaming) Just let me PLAY!!!!!!

ME: eh, there is that tone again. (remaining as calm as any parent who just wants to strangle their beautiful child can)  Lets just try to stay calm and talk things out and we can see were we go from there.

Leon: If you knew this bad news you’d know why I am so stressed!

ME: So tell me about it

Leon: I don’t want to

ME: Okay you don’t have to tell me. But I am a little worried, can you tell me if it’s bad news about you?

Leon: no

ME: is a teacher involved?

Leon: no

Me: a friend?

Leon: yeah…

Me: did someone get hurt or sick?

Leon: no it’s not like that, it’s, it’s it’s just to horrible to say, I’ll write it down.

Me: (a little concerned now…. takes the folded up paper from his hand – reads his scribble and…..) (SMILE) Leon, is this what is upsetting you so much?

Leon: yes!

The note says: ” _________ has a crush on me! (It’s shocking!)”

ME: (inner voice) AWWWWW how freaking cute!!!!!!!!! (outer voice) This is flattering news, it should make you feel good about yourself. _____ is a very nice girl and she obviously has good taste. Don’t look at this as a bad thing, think of it as a good thing. I thought you liked ______.

Leon: I do! but I don’t want a crush, I want a friend!!!!

ME: All you have to do is just tell her that.

We talked a bit more about how he came to this knowledge….

Leon: Her friend came and told me, and then _____ said she was too embarrassed to tell me herself.

ME: what did you say?

Leon: nothing, I just fainted!

Ah the complexities of a fourth grader.

Today he came home in all smiles, we talked a bit before my bronchitis sent me back to sleep and he had a very nice evening playing with his dad.

I had asked him if he had spoken to ______. 

Leon: yeah, I told her that I didn’t feel the same way about her, and I asked her if we could still be friends. and she said yes.

Alls well that ends well!

I just hope ______  is okay! I mean who can blame her? My kid has always been a looker…… 

and he is an AMAZING KID to boot.

I think I may be part Hedgehog

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

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

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

I know sounds horrible; imagine how it feels!

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

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

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

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

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

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

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

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

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

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

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

I Nominate; My Superman

I recently found this on  ellen ;

Nominate the Amazing Person in Your Life…

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

So I decided to nominate My Superman!

Dear Ellen,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Me and my Superman!

EDITTED ON Jan 19th 2012 to add:

Hey Ellen,

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

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

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

Love ya Ellen!!

And my Superman!!!

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. 😉

The truth about housework, sex, and fibromyalgia

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

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

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

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

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

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

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

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

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

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

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

And that is without the trapeze in our bed room 😉

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

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

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

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

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

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

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

TMI????

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.

My Superpower is Invisibility

When people pick the power of invisibility as the superpower they would most like to have, I am dumbfounded!

I am dumbfounded because I have that power and it really sucks!

I have invisible disabilities.

For those of you who are new to the term;  invisible disabilities ,as defined by the Invisible Disabilities Association (IDA), refers to such symptoms as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions and mental disorders, as well as hearing and vision impairments.  These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.

Someone can have invisible disabilities whether or not they also have a visible impairment or use an assistive device such as a wheelchair, walker or cane. For example, whether or not a person utilizes an assistive device, if they are debilitated by such symptoms as described above, they have invisible disabilities.  (click What is an Invisible Disability?  for more).

My invisible disabilities include every one of the symptoms mentioned above. And it sucks. BIG TIME!  Especially when they hit me all at once.

But wait, there is more…

There are other symptoms that are not mentioned….

..Feelings of incompetency, self-loathing, worthlessness, loneliness, guilt, frustration; feelings of being forever misunderstood, and more…

Those are currently, my additional symptoms, at least.

I seem to be going through something right now. I don’t know what it is exactly, but something is happening to me. I have been “OFF” for the lack of a better word, for a few weeks, longer even; it’s just that it seems to be all rushing at me at a faster pace now.

I’ve been having these feelings of being out of control.

.. Out of control of my life – my health, both mentally and physically, my routines, my emotions, my daily living even. I feel as if I am not functioning properly or normally at all anymore.

My standard go to has always been… “Oh it must be my fibro”; “after all it is the change of seasons”; and “don’t I always have a tough time transitioning at this time of year when things get so busy?”  (-yes that is me talking to myself)

But this is different. Something is different – yet strangely familiar.

One of my major complaints is how I a have been increasingly and incredibly more forgetful; I mean scary forgetful. In the last 2 months, I can point to several instances ~ like making plans with a friend to meet up and then forgetting about it within the hour, having an important meeting scheduled in my own home, with Leon’s behavioral therapist and answering the door in my pajamas because I completely forgot about it, even though I had just confirmed it the night before, having whole phone conversations with someone and forgetting that I spoke to them, taking my meds and then forgetting if I did or not (..okay so that’s and old one), going to my doctor –to discuss this very problem, as well as get the flu shot, and at the end of the appointment when he says okay; “ now go downstairs to the lab, for the blood tests and I will call you with the results”, I respond with, “okay, is that where I will get my flu shot as well?”, and he responds, “Jill, I just gave you the flu shot, you have a band-aid right there on your arm, don’t you remember?” …..umm no, no I didn’t remember. That it just one example of how I am forgetting, from one moment to the next.

Then there are the days were I really just can’t get my act together. One little thing happens and I am thrown off all together. Last week I spent an hour looking for a sippy cup that had the very last drop of milk in it for Kiera. No exaggeration, I was running around the house like a chicken without a head, looking for this damn sippy cup that I had just poured, which in the end turned up in the crib with her, yet I don’t remember ever giving it to her. And while I am crazily looking for the cup I am doing a million other things, or at least I am trying to. My fatigue has been increasing too lately, so while in the mitts of trying to get things done I have to sit or lie down and rest my body and my addled brain, every so often. I just can’t seem to focus on any one task. I am all over the place, so much so that I finally remember to take my medicine, and it’s not until after I throw them to the back of my throat and just start to pour the water into my mouth that it dawns on me that –whoa, whoa, whoa, wait a minute, something doesn’t feel right; were those my pills that I just popped into my mouth? Or were they Leon’s?  Pa-Tooey I spit them out and sure enough they were Leon’s. Crap! Instead of taking my two cymbalta and one lyrica, I almost swallowed two concerta and one clonodine –SCARY!!!

And somehow stuff like this keeps happening, not as serious – or as dangerous as all that, but concerning none the less.

I go through my days feeling all discombobulated and completely out of sync. Nothing seems to fit right.  

So what is it? Is it the fibro getting worse with age? Is it hormones? Am I premenstrual? IS IT ADHD…? Is it all of the above?

The more info I get on my son’s disorder the more insight I am getting about myself! This is not unusual by any means. I see in Leon all the things that I did and went through as a child (only without the right tools or coping mechanisms); I see and relive the frustration of it all. When I say I know how he feels, I really, really do. I see so much of me in him, and I see so much of his ADHD in me, then and now. –AHA! So THAT explains it!

  These feelings of incompetency that I have been feeling lately are not all together new either. They feel like growing pains. Growing pains that I felt back in high school.

I’ve been feeling that A LOT lately.

These old feelings of being incompetent or like I’m a “Fuck up”, which was my choice of words back then, like I just cannot fit in no matter what I do, like I just never ever can get anything right, like people think I am a complete ditz because I can never really retain any info or because I forget things a lot (like make plans and then get sidetracked too easily or forget them all together). My lack of ability to train my focus on one thing makes me look careless and scatterbrained, messy even. I can’t get it together enough to keep a clean house without clutter everywhere you look. I feel stupid, and awkward and like my life is not my own, I am not in control of it.

I can look back and say, that while some of those feelings, back then, were your standard run of the mill growing pains, but most of them were and is ADHD.

My blood tests showed no Lyme disease, low vitamin D, and some other medical gibberish that I didn’t understand, basically they are normal. It ruled out other possibilities and I am now being treated for ADHD with Strattera.  Well, in theory anyway, I’ve been putting off starting it because the side effects are scary ugly and I want to do it at a time when I don’t have a lot of ‘other’ things going on and I can deal with them more easily. –yeah good luck with that.

What does all this have to do with invisible disabilities?

Both Fibromyalgia and ADHD are invisible to the naked eye. You cannot look at me and see that I have these dysfunctions. When I am in pain you can’t see it. When I can’t concentrate on the words coming from your mouth you can’t see it. When I am feeling weak or fatigued you can’t see it.   

And with that, the invisibility of it all also comes those feelings. Feelings of incompetency, self-loathing, worthlessness, loneliness, frustration; emotionally instability; feelings of being forever misunderstood, and feelings of guilt.

They affect my mood, my relationships, and my ability to function “normally” out in the world and at home.

Out in the world – I worry about my relationships with my friends, especially the newer ones. What do they see? What do they think? With all these changes that I seem to be going through right now is it easier to just step away from me? – Can you tell I am feeling a little insecure?

I know my lifelong friend and family will always be around no matter how cuckoo I get. But lately I feel as if some of my other friends might be withdrawing. It is probably just my imagination.  But I have felt more left out as of late –Ahh, feels High School all over again

With  majority of my friendships being with women of girls, it is only natural that they get together more often with their girls and Leon being a boy isn’t invited and therefore I don’t get spend that time out with my friends either. They talk openly about their plans, and I enjoy hearing about what’s going on with the kids. But I’d be lying if I said I don’t feel a bit of envy. Especially when plans are made without the kids, and I am not even asked.  It’s really not a big deal, normally this type of thing really would not bother me, but I am not feeling all that normal right not – at least not what is normal for me anyway. I am just feeling very self conscious – more so lately because, as I am feeling more and more out of sync, I just know I must be coming across as flighty and unreliable and lazy.  Face it my life is becoming this huge mess and I can’t seem to get it together enough to clean it up. If my inability to pull myself together because of my fibro and ADHD is being misinterpreted as me just being a loser, then it’s no wonder I feel misunderstood, and lonely. It’s no wonder that I feel like a loser.

At home – my house is never clean, there is always clutter everywhere, and boxes, always boxes. Storage boxes, for The Kids Kloset, Halloween, presents to be wrapped, decorations to be put up, decorations to be put away, old photos to sort, etc, etc. There always seem to be a parade of boxes in and out of the house, and always smack dab in the middle of my kitchen. We get rid of one and the next one comes in. It’s ugly and it’s messy, and always in the way. Worse than boxes is the paper work, papers everywhere – some in boxes even that I just can’t get to. I feel as if I just can’t keep up with any of it. By the end of the day I am too spent to cook, or pack up the day, or even talk; breathing is the most I can handle.

 Ron tells me it’s because I have too many things going on, like taking care of Leon, the babysitting, PTA volunteering, and getting ready for the holidays or some other project.

I am a mom, I take care of my child, we have our challenges of course, but every parent faces challenges, whether it be chauffeuring them from one activity to another or from one therapy session to another; I babysit, that is my job, that is how I make my money, it helps us afford some of the little (very little) extras in our lives; I volunteer with the PTA, it keeps me connected to Leon’s school and gives me a social outlet; and getting ready for the holidays (or any other event whether it be a trip or preparing for the consignment sale) is just some of the little extras that come with life to make it more interesting and enjoyable.

But seriously does that sound like a lot? It doesn’t, it sounds like normal everyday life to me, no more, and no less than what any other normal person might do in their life, right?

Here’s the rub – I am not like any other ‘normal’ person. I look like one; I walk and talk, like one. I even act like one. But what you don’t see is what is invisible. You don’t see the pain throbbing in my legs as I stand there talking to you, or in my arms as I try to carry an empty trash can back to the house, or my hands that look perfectly plain on the outside, but feel so swollen on the inside that I sometimes wonder if they might not just burst open one day. You don’t see the fatigue that forces me to sit or lay down every 20 or so minutes the evening or the day after I’ve had a ‘good’ day of pushing it all aside to do ‘normal’.  You don’t see that even though I am smiling and laughing, and enjoying myself, I still feel the pain in my limbs that can only be described as shards of glass traveling through my veins. You don’t see how confused and foggy I get because the buzzing of the light and the ticking of the clock are louder than anything else going on so whatever it is that you are saying  to me is going in one ear and out the other. You don’t see what is invisible.

What you do see is this person that can’t seem to get it together.  Is she lazy? Is she a slob? Is she a scatterbrained? Is she unreliable? Is she stupid? …

Nope but she is feeling a little invisible right now.

My son has ADHD, now what? (on our decision to medicate our child)

When I began this journey; this ADHD journey, with my son, I was lost.

I mean, I knew what ADHD was …didn’t I??        

…Did I????

I had a vague idea, or so I thought. But as it turns out, I didn’t know what it was. Not really anyway.

I had heard the term, I had even used it –“ugh, you’re so ADHD, would you control yourself already!”

In the past when I had heard about someone with ADHD I would think to myself – Oh, ADHD?  Really?  Oh okay, so no big deal, right? WRONG!!

Yeah, but it’s not really real; it’s just an excuse parents use when they can’t control their kids, right? WRONG!!

But you can just have to control yourself or take a pill or something, right? WRONG!!

It is a big deal, and it is real, and it is neurological. It isn’t just a term or adjective to be thrown about, and it is not an excuse for bad behavior, and it should not be ignored or played down.

When I sought help for my son, I went in seeking anger management for my 5-year-old, after being told he was too young to have ADHD.

That’s pretty sad though, isn’t it? I mean really…, anger management …for a five-year old?

What does a 5-year-old have to be angry about anyway?

A LOT, apparently, especially when that child is neurologically disabled. There I said it, disabled.

Yes people, ADHD is a neurological disability!  Life with ADHD is not a phase, it is not an excuse, it is not bad parenting, and it is not curable. And it is definitely not easy; not by a long shot. Not for the person who has to live with it; or for the people who have to live with them.

Once we sought professional help, getting the diagnosis for Leon was the easy part. Knowing what to do with it was not.

“My son has ADHD, now what?” Seriously! Now what?  My guess is, that this is the question that plagues every parent that has just found out that their child is not the spawn of Satan, he just has ADHD. That and, “so what does this mean for our child?” and:

Well there’s always that little pill, right? WRONG!! …I mean right. No, I mean wrong, I mean maybe …it depends.

Right now, for us, for our son, it is right. But just because it is right for us, does not make it right for all people who suffer with ADHD.

No one wants to throw medication at a then, 5-year-old without cause or without exhausting all other avenues.  

And we, the doctor included were no different.

I am not the type of person who thinks a pill can solve every problem. In fact I’d like to think I am the opposite especially where my son is concerned. But I’ve had to come to rely on medication for so much. I’ve seen the good, the bad, and the ugly side of medication in both myself and in my son. 

Our decision to medicate Leon did not come easy, it took my husband and I several months to finally decide  to try it out, once we felt that there was really no other recourse. And even after extensive research online, in books and magazines and in seeking the advice of several different professionals it was still a very hard decision to make.

The ultimate turning point for us was when my best friend who also happens to be a pediatric RN told us to look at the quality of his life. Will medicating him give him a better quality of life?

And the answer was yes. Before taking his medication he could not function normally at home, in school, or socially with friends. He was constantly struggling to be “good”. He could not stop himself from constantly moving around, staying in his seat was impossible for him. He was always in the spotlight as being the kid in trouble; his self-esteem was so low it was nonexistent. The daily stresses of just trying day after day to control his impulses were more than he could bear. His frustration with himself and the lack of understanding of why, when he so very badly wanted to be good, he just could not; turned to anger and self-hatred. The pain of watching my child, get off the school bus day after day in tears, because he loathed himself so much, is indescribable. So again if taking the right medication was going to stimulate the part of his brain that was misfiring and allow him to function in a way that he could gain more control over himself then yes, yes, yes, it would give him a much better quality of life.

He was a few weeks shy of six years old when he began taking medication regularly. We started very slowly and felt a sense of reassurance knowing that if it didn’t work then we would take him off of it at any time. He is now just a few weeks shy of his 8th birthday, and has been on medication ever since.

Has it helped him? That is a resounding YESSSS!! Is his quality of life better? Ever so much so!!

Is it really just as easy as popping a pill and you’re done with the whole mess? NO WAY!!! NO HOW!!!

This is has been a very bumpy ride; there has been nothing easy about it, least of all, medicating (Leon’s) ADHD. We have gone through 5 different medications up until this point. Some were very effective, until they weren’t any more for no other reasons than his system had become used to it or his growth required higher doses. And some were downright disasters! Disasters to the point of us nearly losing our son as a result of being on a medication that was completely wrong for him. But despite the nightmares we lived through, as a result of that, we would not change our decision to put him on medication. We also will never stop questioning if it continues to be the right choice.

And nothing, NOTHING is ever as easy as just popping a pill. Becoming healthy, being healthy and staying healthy will always require a bit of work. I am a true believer in that, and you will NEVER hear me say that medication alone is what helps my son. ADHD is a constant struggle, and medication is just one of the ways we combat Leon’s ADHD. As his special needs change so will our methods.

On the Positive Side

 I am writing this in response to a negative comment I received last month on this older post I had published back in Aug 2009.

The author of the comment seemed extremely opposed to the idea that there could be anything at all positive about ADHD, in fact he is very confident in his statement that “ADHD has NO positive symptoms.” . He also stated that “the idea that ADHD has benefits is an urban myth“. He seemed to imply that I don’t have my facts straight, and that I was devaluing my son by crediting an illness with certain positive traits that are enhanced and heightened by his ADHD. He also implied that I am doing my son “more harm than good, by trying to convince myself that the bad symptoms are balanced by supposed good ones in order to make myself feel better about his condition“.

He also seems to assume that I have done NO “real” research what-so-ever on this devastating disorder that has turned our lives completely upside down.

He suggests I come to terms with the fact that Leon has a mental disorder. And if I do not choose to manage illness properly I will be setting him up for a huge amount of problems later in life.  He put it this way “you can either come to terms with the fact that most of the behaviors you described are NOT positive now… or you can come to terms with it when he ends up in financial trouble or addicted to something or a thief or unable to hold a steady job“.

Woo-boy was I really steamed up about this!! So much so that I just could not respond… not yet anyway. I just could not stop thinking about it, I was just so mad at this man. This bitter, bitter, evil, uninformed man, with a chip on his shoulder. I did read a bit of his blog, as he suggested I do, so I knew where he was coming from. Even so I was still pissed off. So I had to step away from it for a while.

Now as I reread it all I am still quite annoyed by it all, but at the same time I mostly feel very, very sorry for this man. It seems that with his recent diagnosis of ADHD, he has found something to blame for all the bad things that have gone on in his life without needing to take ownership of it. Going through life focused on how much it sucks because you have ADHD, just makes for a very miserable life! 

On the Positive Side….    

I can agree with him on one point, and that is we have a choice about how to manage ADHD. But I wonder if he understands that there is no one right or wrong way of doing it. Every person’s struggle and accomplishments with ADHD are unique onto themselves. What works for one may not work for another. And just the same what may work this week, or this month, or even this year may not work in the next one.

 I have in fact come to terms with Leon’s neurological disorder, ADHD, which is classified as a mental disorder, as well as a disability. I have done the ‘real’ research and have educated myself about my son’s ADHD. I’ve read dozens of books and articles, joined CHADD and attended several meetings, consulted with wonderful doctors and professionals in the field of ADHD, including psychiatrists, psychologists, neurologists, and therapists. The psychiatrist who diagnosed him started us on our ADHD journey, we found an exceptional psychologist who did an extremely thorough educational/behavioral assessment on him, and confirmed the diagnoses of ADHD/ODD and made some very good suggestions for us and the school to follow. His neurologist has him on the right medication combination of Concerta and Clonodine, they work wonders in keeping him stabilized and putting his inhibitions, impulsivity, and inattentiveness in check. We as a family visit a therapist, specializing in special education and social skills, regularly. His school has a wonderful team of people who are implementing his 504 Plan, including the school psychologist, a OT, and a TA. 

And with all the bad that we experienced last year when he was just 6 years old; from hour-long homework sessions, to having to replace a toilet bowl due to his flushing several toothbrushes, to his public and private temper tantrums, to stabbing his OT teacher with a pencil, to journaling about killing his parents, to cutting his clothing while they are still on him, to having him fear going to school because he knew he would get in trouble yet again, to the school losing him, to him jumping out of his bedroom window at 5am, to so much more….; there is still NO ONE who can tell me that there is nothing positive about ADHD!!!

~~psst! did you notice all the links to previous posts? you can get the back story that way~~

 

Here are some excerpts about the positive side of ADHD:

Positive effects of ADD & ADHD in children

from HELPGUIDE.ORG

In addition to the challenges, there are also positive traits associated with people who have attention deficit disorder:

  • Creativity – Children who have ADD/ADHD can be marvelously creative and imaginative. The child who daydreams and has ten different thoughts at once can become a master problem-solver, a fountain of ideas, or an inventive artist. Children with ADD may be easily distracted, but sometimes they notice what others don’t see.
  • Flexibility – Because children with ADD/ADHD consider a lot of options at once, they don’t become set on one alternative early on and are more open to different ideas.
  • Enthusiasm and spontaneity – Children with ADD/ADHD are rarely boring! They’re interested in a lot of different things and have lively personalities. In short, if they’re not exasperating you (and sometimes even when they are), they’re a lot of fun to be with.
  • Energy and drive – When kids with ADD/ADHD are motivated, they work or play hard and strive to succeed. It actually may be difficult to distract them from a task that interests them, especially if the activity is interactive or hands-on.

Keep in mind, too, that ADD/ADHD has nothing to do with intelligence or talent. Many children with ADD/ADHD are intellectually or artistically gifted.

AND……

Some positive characteristics of adults with ADD/ADHD

from mitalk.umich.edu 

The symptoms of ADD/ADHD are not all negative. People with ADD/ADHD also have many positive traits that are directly tied to their active, impulsive minds. The important part is to focus on the positive aspects, while trying to control the negative aspects.

  • Creativity: People with ADD/ADHD often excel at thinking outside of the box, brainstorming, and finding creative solutions to problems. Because of their flexible way of thinking about things, they tend to be more open-minded, independent, and ready to improvise.
  • Enthusiasm and spontaneity: People with ADD/ADHD are often free spirits with lively minds — qualities that makes for good company and engrossing conversation. Their enthusiasm and spontaneous approach to life can be infectious.
  • A quick mind: People with ADD/ADHD often have the ability to think on their feet, quickly absorb new information (as long as it’s interesting), and multitask with ease. Their rapid-fire minds thrive on stimulation. They adapt well to change and are great in a crisis.
  • High energy level: People with ADD/ADHD often have loads of energy. When their attention is captured by something that interests them, they can have virtually unlimited stamina and drive.

Hyperfocus: A Positive Symptom of ADD/ADHD

While adults with ADD/ADHD have great difficulty maintaining attention, those same individuals often are able to “hyperfocus” for long periods of time on tasks or projects that they find interesting. This is particularly true of interactive or hands-on activities. They may even be compulsive about it, spending hours immersed in the activity without a thought to anything or anyone else. When they’re “in the zone,” people with ADD/ADHD often lose all concept of time. Hours pass as if they are minutes. This single-minded ability to hyper focus when used appropriately can lead to significant accomplishments, discoveries, and creative breakthroughs.

AND…

In the video,

 ADD & Loving It 

from GLOBALTV.COM

(which I very, very, strongly recommend and urge you to watch)

 ~Dr. Edward M. Hallowell  says; “Without proper diagnosis ADD can ruin your life, having said that, the tremendous good news is, if you get the diagnosis and you get proper treatment, not only can you avoid all those disasters, you can achieve spectacular success. You can be at the absolute pinnacle, not only in the terms of success, but in happiness, fulfillment, and a rich and wonderful life”.

~He also says; “It’s important to embrace a strength based approach that does not in any way deny that there is a downside but emphasizes the positive as a way of developing the positive”.

~It is also pointed out that, Dr. Lynn Weiss Ph.D, a ground-breaking pioneer who has been working with ADD patients for over 30 years, lists 29 Positive Attributes of ADD. 

As listed in her book Attention Deficit Disorder In Adults: A Different Way of Thinking

1. Sensitive

2. Empathetic with the feelings of others

3. Feels things deeply

4. Creative in nature (including problem solving)

5. Inventive

6. Often sees things from a unique perspective

7. Great at finding things that are lost

8. Perceptually acute

9. Stand-up comic

10. Spontaneous

11. Fun

12. Energetic

13. Open and un-secretive

14. Eager for acceptance and willing to work for it

15. Responsive to positive reinforcement

16. Doesn’t harbor resentment

17. Quick to do what one likes to do

18. Difficult to fool

19. Looks past surface appearance to the core of people, situations, and issues

20. Down to earth

21. Good networker

22. Sees unique relationships between people and things

23. Cross-disciplinary and interdisciplinary

24. Less likely to get in a rut or go stale

25. Original, with a sense of humor

26. Observant

27. Loyal

28. Intense when interested in something

29. More likely to do things because they want to than because they should, thus often wholehearted in efforts

 Keep in mind not everyone who has ADHD has all these traits, and sure people who aren’t ADHD have these traits too, but many of them appear over and over in people with ADHD.
So you see, not only have I read about the positive side to ADHD, gone to lectures about the positive side to ADHD, and spoken with professionals about the positive side to ADHD, but we have experienced the positive side of ADHD as well.

Leon has become extremely well-adjusted, all the school’s accommodations along with our accommodations here at home, and his being on the right medication regime and seeing a therapist regularly are making all the difference in the world. We are teaching him to play to his strengths and never to use his ADHD as a scapegoat.

We do not in any way deny the negatives of ADHD, yet we CHOOSE to remain on the positive side.

And would you believe we are all doing just fine, Thank you very much!?!

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More links on the positive side of ADHD

 Positive Aspects of ADHD and ADD: Benefits to Having Attention Deficit Hyperactivity Disorder and Attention Deficit Disorder

The Positive Side of ADHD

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I just want to add that I in no way harbor any resentment to the person who prompted this post. Nor do I think he is Evil. 🙂   I wish him only the best, and many, many, positive things in his journey going forward with his ADHD!!

  

  

  

 

 

 

 

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