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Let’s talk about Chronic Jenn

Let’s talk about Chronic Jenn

(Warning: This just may be the most boring post you’ll ever read from me. I just wanted to educate y’all before we move forward.)

One of the things that is going to change around here is the fact that my “babies” are grown up. I have a 20-something, a just about to be 20, and a high schooler. So, my days as a momblogger are fading. Their stories are theirs to tell. I’ll still share some of our family fun because, well, we aren’t the normal family. We are loud, sarcastic, (at times) inappropriate, and we have one helluva good time. There is too much fun to not share those family times.

However, when it comes to my stories, you’re going to hear more about my medical conditions. It’s not that I want to whine or gain symathy. I have a dog for that. You should just understand that every day, all day, every hour, every minute, I am effected by one or more of my chronic illnesses or syndromes or nasty little devils that make my life a living hell most days.

Pain

I won’t list everything I have going on because that will be the most boring post EVER. But the big three – or as I like to call them – the mighty triad that wants to kill me or least make me suffer. I really need a meaner sounding name for them, come to think of it.

Anyway, the chronic issues I am dealing with are:

Chronic daily headaches & chronic migraines (and their good friend cluster headaches). And yes that does mean every single day I have a headache at or above a pain level of 5 or above. That is a good day. I also have a minimum of 12 migraines a month. A good month. Those are just examples. It can be worse. It is rarely better unless I have been in the hospital and they have medicated it down to a zero pain level. That usually takes about 9 days of nonstop IVs.

Fibrmyalgia is along for the ride. I don’t even know how to explain all of what fybromyalgia does. But I can share what I go through with this.

  • Chronic muscle pain or spasms (like having the flu all the time, 24/7)
  • Severe fatigue (Again like the flu. You need a nap after a shower.)
  • Insomia (which is a bitch seeing as you are so fatigued but sleep is not going to happen)
  • Your body feels all kinds of stiff when you first wake up. (Feel like I’m Rice Krispies with the snap, crackle, and pops going on.)
  • The awful “fibro fog” where I have retention of Dory from finding Nemo (Feel free to call me Dory. Seriously, my retention is horrible a lot of the time.)
  • Migraines (YIPPEE) and tension headaches. (YAY)
  • Feeling anxious  (Me? Yep!) or depressed (Duh)
  • Tingling in the face, arms, hands, legs, or feet (Too often to count. Like the pins & needles when your foot goes to sleep)
  • Exercise kicks my ass (even more than before)
  • (And the one no one talks about) GUILT  Seeing as it is an invisible illness, I am always apologizing or feeling guilty if I have to nap or not go out with the family. Guilt sucks.

Now Lupus is the one I know the least about because it scares me the most. I realize that is not the wisest route to go, but that’s me. I am  very aware of the chronic headaches, migraines, and cluster headaches and I do know my fybromyalgia but when it comes to Lupus I can only tell you a few things.

With Lupus, I know my ANA is very high. (Meaning the my good cells are really awesome at kicking my own body’s butt.) What I do know that has shown up:

  • Fatigue (Like with fibro, it is worse than the flu)
  • Fever with no explanation (I wake up every day with one and have one many nights)
  • The butterfly rash on my face (So not a big fan of this)
  • Hair loss (It’s bad enough that I see grey popping in. I don’t need to lose what I have.)
  • Swollen joints (I mean it is seriously hard to put a bra on, people.)
  • Dry mouth & eyes (I literally never leave home without a water bottle and eye drops.)
  • Kidney issues (This is also a side effect of all of my meds. Need the meds, need the kidneys.)
  • Gastro issues- (Like reflux so bad it is burning my vocal cords and changing my voice)

So, there you have it. That is a day in the life of Chronic Jenn. Anyone want to switch? Nah! There is no one I would ever wish this upon. I take it upon myself before I’d ever wish it on someone else. I’ve got this. I’m kind of a badass now.

 

 

It’s time for me to go old school again

It’s time for me to go old school again

Ohh Emm Geee! Look who is blogging again. Yes, I realize it is NaBloPoMo (National Blog Posting  Month) but no, I am not blogging because of that. And I also know it is NaNoWriMo (National Novel Writing Month)  and rather than sign up for that, I may dust off something I was working on. And, yes, it is also NaNaTaMo (Natioanal Nap Taking Month) and I most definitely will be taking advantage of that particular tradition.

Anyhooooo, I realized most of the things I would’ve normally blogged here, I have  been microblogging on Facebook. However, I haven’t been on Facebook for almost a week and you know what?  No one has even noticed. Facebok tends to give you a false sence  of intimacy. Not with everyone but with many. Especially when it comes to my chronic illnesses and bad days. My high school friends don’t want to hear about that. Neither do the people I worked with on campaigns a year or two ago (or more).  However, I will add that  a couple of weeks ago when I hit a wall of pain and a very dark place and gave a shout out for help,  many, many people came forward to be there to help pick me up.  That meant everything to me. So, there are awesome exceptions. I may pop my head in now and then but it hasn’t missed me so why should I miss it? Am I right?

Focus On Your Goals!
Focus On Your Goals!

So if I am going to be here more often, I need to clean house. Basically, I have some big changes coming up for my little home here. Can  you believe I missed my Blogiversary? 12 years! 12 YEARS!! Now it’s closer to 12  and a half. Nevertheless, can you believe I have been writing here for 12 years. Granted, I have been terrible about being consistent. But I need my space here to be share my thoughts freely. If you come here, it’s your choice. Unlike Facebook when I just pop up in your newsfeed, you choose to come to my home here. I am dusting her off, washing the windows, fluffing the pillows, and lighting some candles to make it smell cozy and homey. And of course, there is always coffee ready for anyone who wants some. I hope you come here and keep coming back. I have set some tough goals for myself here.

For instance, this post was supposed to be about something totally different and more personal but I backed away.  I’ll get used to being open here soon enough. (Or as they call it “blogging naked.”) The things I post may not be what my old readers  want to read. And, yes, that scares me. But? I have to get back to being myself. I can’t be the person some people want me to be. At least not all the time. I have changed. Chronic pain and chronic illness have changed me. I’m sorry to those friends who couldn’t handle the changed in me and had to walk out. I understand and I hold no grudges. It’s rough to have someone with chronic pain and illness in your life. I get that.

But as I write this, I can’t help but wonder if personal blogging is still a “thing” or have bloggers turned to microblogging on sites where they blog in sound bites? I guess we’ll find out. Are you ready to figure this out with me? Grab my hand. Let’s close our eyes. Now… Leap!

One last time

One last time

Early in recovery I figured out fast that an addict has absolutely no problem calling a fellow addict out on their stuff. It’s not considered rude. It can be lifesaving. Addicts are the world’s best at hiding what they are going through. What you (as a non-addict) think you know about one, you may be lucky if you know 1/3 of what is really going on. We are masters at deception. Honestly, chances are the people who are with you day in and day out don’t  know what is truly happening inside your mind or heart.

There was a guy in recovery that I had an incredible knack for getting under my skin. (The bonus was I got under his skin just as much.) He knew exactly when to call bullshit on me (and did) and I knew when to call it on him (and did). It was a weird relationship. We could piss each other off like no one else could but we depended on each other early a lot.

I knew if I even tried to cover up a real emotion, a real frustration or (heaven forbid) said I was fine, I knew without a doubt I would get bullshit called on me in no uncertain terms. It kept it real. It kept me from slipping. It kept me accountable not only to staying clean but to staying real.

About 3 months into my recovery, he called me. He wanted me to meet him at a bar near where I lived. He was there alone and had “scored” so he wanted to be safe and possibly enjoy one last time together.

One last time.

It scared me unlike anything I had every experienced during recovery. I called bullshit on his attitude. I begged him to get a cab to my house or a meeting and I would pay for it. I kept him on the line while I called his sponsor. I had to get someone to that bar to get him. I just knew it couldn’t be me. I wasn’t ready for that. Not one on one with that one last time right there for the taking.

After a while of begging me to come see him, he realized I wouldn’t. He told me he’d see me in a meeting that night of the next day but he just had to do this.  He was losing his mind and he knew if he just did it just one more time he would feel better and be able to work harder and move on.

I called bullshit.

Because that thinking is total bullshit.

He lashed out a bit at me when I called him on it and told him he was justifying throwing away hard work. I asked him not to do it for his kid. I asked him not to do it for me. I begged him not to do it for himself.

His sponsor got to the bar after my friend left. I went to 2 meetings that night. I went to 3 the next day. I hung out at our home group so often, they thought I moved in. He didn’t meet me at a meeting.

Every addict I know has that tickle in the back of their brain that is always there- “One more time“….”It’ll be just a quick fix!”….”Just once more“…”One last time to remember” and mostly “I just don’t want to feel this way – for just a little while.”  That tickle sometimes becomes a sucker punch to the gut.

I’ll be raw and honest and tell you that there have been times, even after a decade clean, where I have jonsed so badly I would pace the halls and scratch my arms until they bled. I paced. I rocked. I walked. I hit things. I threw things. I exercised. I ate. Nothing shuts that damn voice up. Being around supportive people makes it smaller and more insignificant. Talking to a sponsor or someone in the program makes it easier to deal with and push so far back you can hardly hear it. (But it sits and waits until you are just weak enough to listen to it.)

I wish the voice didn’t exist but when things are bad or you feel alone or you are hurting, it’s there waiting.

I never saw my friend again. I try to believe that he was embarrassed by what happened and went to another home group to get clean again. I try to convince myself he got help and moved to find a new environment. I’ve looked on Facebook and Google but I haven’t found him there either.

The one thought I don’t want to have is that his one last time really was his one last time.

If you’re in recovery and are now clean or sober, you’ve had your one last drink or drug already. You’ve already had it. You don’t get another one last time. You Do Not Get It. Ever. When  you realize that, you find strength.

And then, when the voice tickles the back of your brain, you can call bullshit.

I need more time.

I need more time.

It is a rare moment when I am able to see all three of my kids together in one place. Interacting. Laughing. Being siblings. Enjoying each other. I stood back and watched them as they teased, laughed and were just being who they are. My mind raced back to the early days when I never thought the day would come when all three of them would be able to not only get along but enjoy being with each other by their own choice. I used to worry that the age difference between the boys and my daughter would keep her from being a part of the sibling gang of fun. (She can certainly hold her own with her brothers!) I thought the boys who spent the first half of their lives fighting would never get along and now they are best friends.

I watched through eyes that were suddenly blurry with tears I refused to shed. I am not ready for my oldest to be preparing for college.

Please slow down time. Let it last longer. I’m not ready for them to grow up so fast.  Please slow down.

As  I sat waiting for Brandon’s x-rays to be finished after his car wreck, I was scrolling through old pictures on my phone. They dated back several years. It felt like just a few months. I laughed at a picture taken in an unguarded moment of my boys laughing together at what I can only assume is something better left unknown to me. My heart warmed to see a picture of all of us at the Texas State Fair with Gabby proudly perched on top of Brandon’s shoulders grinning from ear to ear. I choked up at a picture of  Z trying to teach Gabby the keyboard. I laughed at a picture of Gabby and Brandon lying on the couch playing video games. I smiled at this year’s first day of school pictures.

Please slow down time. Let it last longer. I’m not ready for them to grow up so fast. Please slow down.

I’ve come across so many toys, pictures, artwork and memories as I attempt the massive project of completely decluttering the house. (It’s a 10 year plan.) I’ve found massive amounts of Hot Wheels. I never thought the day would come when I wouldn’t be dodging Hot Wheels littering my floor trying not to slip and fall by stepping on one. Now they lie in a toy box or in a drawer unused, dusty, and forgotten. The boys have moved onward and upward to images and dreams of real sports cars and desires for their own car to drive. I clutched one to my chest and felt a longing for the days when I’d heard the boyish sounds of vrrooooom vrooooom CRASH! coming from the other room. Now the stakes are higher and when there is a wreck it is real and people can get hurt.

Please slow down time. Let it last longer. I’m not ready for them to grow up so fast. Please slow down.

I packed away dolls and Barbies and Dora and Blue’s Clues and wondered exactly when all of those stopped being the most popular toys in Gab’s collection and favorite shows to watch. I wanted to know exactly. Why didn’t it happen in a moment worthy of a memory stamp in my  mind so I could hold onto it? I’m sure it was gradual but it seems like it happened overnight. Those things have been replaced with shows for tweens, music that is mainstream and drama that is supposed to be a part of my past not her future. When did the baby dolls get replaced with electronics? When did rocking her to sleep get replaced with her curling up in her bed with a book even adults enjoy?

Please slow down time. Let it last longer. I’m not ready for them to grow up so fast. Please slow down.

Our house echos with laughter when we are together. If we are all home, you better believe it is loud. We laugh. We scream across the house at each other. We play. We chase. We tease. We support. We spent a lot of our time laughing- with each other and sometimes in fun at each other- but we are always having fun. When tensions are high for one reason or another, we hug it out or laugh it out. I can always, always count on my kids to make me laugh. Through the hard times. Through the scary times. Through the good times. Through the awkward times. I sometimes forget not every family laughs with and at each other as much as we do. And,  yes, there are times when the way we interact with each other may seem strange to others but it works for us. We thrive in it! Every single burst of laughter we share together fills our home with memories that will echo forever. I so want the laughter to stay just as it is. Not one voice left out or moved on.

Please slow down time. Let it last longer. I’m not ready for them to grow up so fast. Please slow down.

I always promised I wouldn’t be the mom who can’t let go. Well, I now amend that to mean I promise I won’t be the mom who won’t let her children grow and move on. I can promise you now I will never let go. I will just let them become the young people they are destined to become. The thing is? It is happening too quickly for this mom. I’m so proud of them. I know they are good people and will be amazing out on their own when the times comes. I just wish there was more time here at home with all 5 of us before things change.

Please slow down time. Let it last longer. I’m not ready for them to grow up so fast. Please slow down.

 

When everything goes wrong, dance it out.

When everything goes wrong, dance it out.

I am ready for this week to end. In fact, I am ready for this month to end. (And we’re only halfway there!) So, what has kept me from blogging, writing and being social in general? It’s hard to do those things while either sleeping, at a doctor or dealing with insurance companies.  Here is a boring little bullet point type run down on what is going on but without those cute little “bullet point” points in front of them.

I’ve been playing Doctor Roulette. I’ve made it to the “Name That Condition” round. It’s kind of like a lightening round except totally not in that it seems to drag on forever. I have some swollen glands and found a knot behind my ear about the size of a cherry that should not be there so we are hoping for mono. (Yes, I did type “hoping for mono” because when a doctor tells you that sounds like the best case for these things, you hope for mono.) With the extreme headaches and fatigue, we have a good shot at that.

My son was in a car accident. Not his fault at all. He was rear ended by a teen driver who appeared to have been distracted and didn’t notice my son slow down  as a car in front of him slowed down to turn. It is not fun to pull up and find your son sitting down and his car looks like this:

(The front of the car looks about like the back. The other cars have only cosmetic damage.) Thankfully, my son will be okay. Nothing is broken. He was hurt but nothing is broken and he walked away. That is my blessing for the week. I don’t care how old he is, he is still my baby. And, yes, I have been hovering. It’s my job.

My van was broken into. That just made me mad. I had things in that van that you would THINK someone would want to take. Things like CD’s. (Does that mean my taste in music sucks?) Nintendo 3DS games and DS games. (Those are cool!) I also had a power converter (2!) in the car. I had checks and cash in there, too. AND I had a 12 pack of Diet Coke. (They are lucky they didn’t take that! That would have pushed me over the edge. Some things are sacred.) They took none of that. They took  my toll tag. (Yes, for real. The kicker of that is I called today to report it- a week later because I have been a bit busy- and they said there has been NO activity on it. What?! If you steal it, at least respect me enough to use it. Now, I’m mad.) Also, an adapter so that you can listen to your MP3 player through your radio. It was old- in tech years. Here is the kicker: I had a newer MP3 adapter that was not taken right there beside the other one. That is all that I could tell that was taken.  Two things. Two dumb things and one hasn’t even been used. Not that I wanted more things taken but for crying out loud, these thieves were idiots.

I had to take some medication that I did not want to take but was necessary. Because I had to take it, it made me more sensitive in general. Grumpy. Disappointed. Sad. That makes life at home for the rest of the family not so fun.

I miss my sister friends. I miss them so much I’m about to get in my van (minus my toll tag and old MP3 converter but with cool CDs) and just go get them. I need that boost. They remind me who I really am and that the real me is loved because it is the real me. Of course, if I go get all of them, I have to drive all over the country and even to Canada. Seeing as I can barely go to the store without needing a nap right now, I don’t think I can make that kind of a road trip. Yet.

So, there you have it. My week. I am very happy it is Friday.

And because it was all such a downer, here is something I hope makes you laugh. Now, the banana… If you know me, you know that I would be horrified by him doing that to me. However, my goal is to react like the security guard before BlogHer’12. (Hey, a girl has to have goals!) I think I  heart the security guard because he  reminds me of my friends. It’s totally something we would do.  Or at least a lot of them. Some would just keep talking while the rest of us do it and they would not even bat an eye of shock or surprise. (That is SO why I love them!)

So when my head no longer hurts, I hope you’ll join me in busting a move and schooling the banana! When in doubt, dance it out!


 

Moms of teens don’t blog. Oh wait! Yes, we do! So why are we so under represented everywhere?

Moms of teens don’t blog. Oh wait! Yes, we do! So why are we so under represented everywhere?

I have a ten year old. By definition now, she is considered a tween. In addition to her I also have two teenage boys. A senior in high school and a sophomore in high school. Teenagers. Teens. Those who are not babies and not yet adult people. They are those who still live at home.

So where are the websites, resources, and “expert blog sites” for me? Does parenting end at 8 or 9? I proposed this question to someone who was touting their new blog farm as “The Go To Site For Parents of babies, toddlers and beyond!”  But I am guessing “and beyond” means up to 8. (Surprisingly, I got no response when I asked about their huge missing demographic of teens.)

In 2005 I spoke on the first mommyblogger panel at BlogHer. My kids were 10, 8 and 3. Today’s dream demographic for blogs and marketers! There are websites, blogs, magazines etc all dedicated to those ages. But guess what happened. Go on. Guess.

Did you guess they grew up? Bingo. Those kids are now the teens and tween. You see, these adorable babies and toddlers and young grade school kids grow up. And you want want to know what there is out there for the parents of these now older kids.

Not a damn thing. Squat. Nada.

Busymom wrote about it.

Cursingmom wrote about it.

JoanneGlenniaBeth,  Deb, and I sat and talked for hours at BlogHer’11 about how under represented parents of teens are online. How much marketers, magazine blogs and the latest in “blog farms” are missing out by ignoring such a huge demographic. (Trust me when I say I spend a helluva lot more on my tweens and teens than I ever did on the kid toys. WAY more!)

With one post on Busymom’s site commenters (parents of tweens and teens) agreed how sad it is to have such little representation out there.  I am talking about well known, long time bloggers like LizMelisa, Headless Mom, MelissaShannon, Cheryl,  Robyn, Babybloomr…those are just a few moms who piped up in agreement.

A big “argument” about why there are not many sites about teens is because our children no longer want us to write about them.(Your precious little one probably doesn’t you to be writing about them either, but that is a totally different topic.)  I am not talking about writing about their lives like we did when they were children without a voice to tell us to stop. I am talking about resources, advice, support.  When  newborn cries, there are usually only a handful of things that can be wrong. (I know there are exceptions.) With a teenager? Oh for the love of all things moody, hormonal and life changing there could be a million things. But even if it isn’t “What’s wrong?” there are things that we– as parents of teens– would love to have support with.

  • School.
  • Driving.
  • Health.
  • Dating.
  • Parties/gifts.
  • Changing relationships.
  • Jobs.
  • Cars.
  • College.
  • Etc, etc.

Unless you have a support system, you are on your own figuring it out.

I have also heard that marketers are trying to directly hit the teen market rather than go through parents. I call bullshit on that one. Where do they think these teens and tweens are going to get the money? It’s called the bank of Mom and Dad. To try to bypass us is ridiculous. And very, very short sighted. It doesn’t help when a company who is trying to reach out to parents of teens use parents whose children haven’t even hit the double digits as spokespeople. Isn’t that kind of like asking a man to tell  you what labor feels like?

I actually got an email from a PR rep that first mentioned that “even though your kids are still very young….” (tuned out right there) blah blah blah “and I have found there are so few bloggers with teens these days.” The hell? What Internet have you been on. I can give you a list of over 70 and still not have a complete list.

Those little kids on the adorable mommyblogs are going to become tweens and teens. Those adorable little Pampers wearing cherubs will become moody little strangers. Then what?  To quote cursingmama, “The Internet is no place for parents of teens.”

What do you think? Do you want your voice heard? Do you want more resources? Do we storm the gates trying to get the current market to listen or do we do it ourselves?  Just as we had to fight the whole “mommy bloggers aren’t worth our time” situation almost 8 years ago. (Now? They are are holy grail of bloggers. And yes, I am going to say that those who now have tweens and teens did help pave the way to that reality.) Is this our new stand? I’d love to hear from you! Share your blog. Share what you want to see. What do you think about the representation of tweens & teens– or under representation?

If they aren’t able to meet our needs,  do we do it ourselves and pave the way for the Pampers generation to come? Again?