Judge, condemn, KMA!

For the most part I have friends that are supportive however there are also those who like to give their opinion without knowing all of the facts.  Some people only see the mom who is pushing forward, driving her Littles to school and activities, volunteering at the bare minimum & attending events to support her children.  These are the people who seem to talk the most and share their opinion of my situation.

I suppose I should be flattered that I’m so interesting that my life is the topic on so many lips.   Although I prefer not to engage, as my time is rather valuable, I would like to enlighten you a little on my quality of life…  or lack of.

Let’s start with my morning, which included me crawling out of bed, where I hardly slept because I was so extremely uncomfortable. I made it to the bathroom and proceeded to get some clothing on so I could get the littles up for school. No sooner did they start moving that I found myself struggling to make it back to the bathroom floor where I gave up what little hydration was left and then forced myself to drive them to class.  I haven’t made it into the office in almost 2 weeks because my body just doesn’t want to cooperate, and today was no different. As I attempted to drive home to my safe haven I had to pull over for fear of getting sick in the car.  I sat in the parking lot of a little restaurant watching people go in, smiling and enjoying each  others company while I did my best to avoid letting go in the front seat.

This isnt an unusual day, as it seems to be my new way of life.  The past few months have been filled with nausea, vomiting,  loss of voice & sore joints ( sometimes to the point that movement brings tears). There are days when I can’t allow my children to hug me because their touch makes me wince in pain and nights when the sheets are even bother some against my skin.  Best part is there are things that I’m still learning, such as not to over brush my hair because it causes inflammation of the scalp which in turn leaves me in pain for days and unable to even lay my head on a pillow.

Ahh but one of my very favorites  is what I can only refer to as bee stings.  It happens at any time without notice and feels like a bee has stung me. Sometimes in the foot, sometimes in the leg or even in the eye. I’m told it’s from the neuropathy and it’s basically nerves that are misfiring.  At times it can also feel like water droplets running down my leg until I reach down and realize that my skin is dry. It’s an interesting condition that keeps you wondering.

These are just a few of the obstacles I’ve been facing on top of depression, due to my new found inability to do many of the things I once enjoyed.  It hurts my heart not to be able to take my little ones to events  that we once enjoyed, because I can no longer regulate my body temperature.  Driving for long distances involves bringing another adult to take over when my knees start to cramp up or my hands will no longer a grip the wheel. Even trips to places that involve walking are limited unless there is a wheelchair or scooter available.

I can say that I haven’t use my cane in about a month so that is one positive that I will focus on (because everyone needs something right). My goal right now is to make it through the summer and the upcoming events and just hope for the best.

So this little insight on how my life really is, is just a sample. I know that many only see what they want or what I allow,  and that may be the only control that I have left.  Just know that I’m doing the best I can and that I don’t wish this on anyone, not even your judgmental, opinionated, uncaring self. I guess the best part about all of this is that  you truly get to know who is genuine and deserves to be a part of your life..:

~just t

 

Reinventing Me!

Or at least trying… so in the course of a very lengthy flare topped with a heap of depression, it has dawned on me that I need a change. At the rate I’m going I honestly don’t know that I will make it to see 50. Between the meds and a combination of stress eating and med weight gain, I’m growing rapidly. This is effecting everything that is me. My BP is not controllable, arthritis has set in to my knees and my hands, my joints ache, walking becomes unbearable and I’m exhausted by the simplest of tasks.

With this said, I need to find ME again before it’s too late. I’m currently taking between 32 & 40 pills/day, some of which are recommended vitamins while others ensure I can get through the day. This has become a daily chore and I fight myself over it like a 4 year old trying to eat their veggies. Swallowing is harder being that my throat is generally inflamed and some days, just for fun, by body throws in things like nausea to keep me on my toes. Yep, I’m a hot mess!

So how do I change it… well for starters I purchased an exercise bike last night and after just 10 minutes on it today I realized I have going a long road ahead. I’m going to come up with a meal plan that helps get me there and just try and away I go.

Still have some appointments ahead, issues to address but gotta start somewhere.

So here’s to my new journey, party of one. I’m the only person who can fix this mess so on goes the big girl britches, seatbelt tightened and away we go.

I always tell my Little’s, you don’t need luck when you’re good… gosh I hope that’s right.

-Just T

 

 

Not afraid…

Today… was standing  at the counter waiting for someone to finish checking me in to see the doctor.   Although I was seeing the knee doctor I wasn’t feeling very well and could feel my chest tightening.   My BP hasn’t been cooperating and yesterday at the cardiologist we discussed raising a few meds with a recheck in three months.

 

So as I stand there holding the counter and feeling lightheaded I swear there was a darkness that seem to come up from behind me like a shadow. Perhaps it was just my body warning me that I was about to go down  but for about one second it’s startled me…  and then came the peace.  It was like a magic light turned on and I felt this calmness.   All in a matter of seconds  I suddenly felt myself close my eyes and in my head I called for that shadow to come back.

I’m tired,  my anxiety is more than I could ever express,  my pain levels can go from 0 to 60 faster than any Maserati and most of all I’m just over it.

Oddly every time I get like this I have a little pity party and then I suck it up and  attempt to move on. I try not to feel guilt but I do wonder what gives me the right to complain  about my life when I see somebody around me going through much more.

I often don’t feel like I’m being taken seriously… as if I’m making it up or choosing to go through this.   To those who don’t get it I hope you never have to deal  with anything that makes you feel the way I feel  right now.   Frustration,  loneliness, pain, depression  and an overall feeling of being alone.

Perhaps the shadow was just my body telling me to calm down or maybe it was something more, like a voice telling me it’s going to be okay. Regardless, I want to feel it again, I want to see what this shadow, darkness, unknown feeling leads me to because it’s the first peace I’ve felt in a long time…

#MyDailyPositive

 

#MyDailyPositive

This is my new hashtag!! Yep my way of life going forward. Not that I’ve spend years being a negative nelly but anything I can do to be more positive and encourage others, has to be the way to go.  So why now, why after 45 years am I attempting this fulltime focus on the positive.

Well, in case you didn’t notice things in my world aren’t exactly rainbows and roses. As if my years of depression didn’t kick me enough I have two very ADHD children (and one all grown up), who are over the top needy. It’s me who made them this way however it’s starting to take its toll. Having officially been diagnosed with an autoimmune disease and neuropathy I’m generally tired most of the time. I’m also on several medications, some of which cause a nice little brain fog thing that makes me forget words, directions, get lost way too often and takes my focus and shakes it all up! So take all of this, add to it that I work upwards of 50 hours per week and am a single mom of two overactive littles, and even I wonder why I don’t crawl under a bed.

Sooooooo… LOL that’s my story in a nutshell and all the more reason why I can’t give up and I can’t let this life get me down. Man I sound whinny huh!

Regardless this is me and this is the start of #MyDailyPositive

 

Live, Love, Laugh and don’t let the world get you down!

Always, Just T

Chronic Illness Sucks!!

Regardless of when the official diagnosis came the pain has lingered for some time. Joints, skin, muscles all seem to take turns keeping these illnesses on the forefront of my thoughts. I do my best to fight back and be proactive. I have a heater in my office so that the pain in my fingers stays manageable and allows me to work on the computer. I use 5 blankets each night and wear socks to keep the heat in and hopefully hold back the cramping that wakes me. I avoid the sun and heat exposure to keep the blistering away, the itching that overcomes me and the lightheadedness that hits with little notice. I push through the day taking only one of the two pain pills I’m allowed and save that 2nd one for ‘OMG Can’t take it’ days. There are times when touch feels like fire and a day without shocks or numbness in random spots is rare. Swollen joints and pain in shoulders and hips makes finding a comfortable sleeping position near impossible.

This is a day in the life of chronic illness. Exhaustion and pain while continuing to function is a whole new type of strength that you never knew was feasible. And the best part of it all is that it is invisible so no one will believe you! Yep, it’s not like you have a scar or cast or some other visual effect that makes people feel bad for you… not that I’m here for the pity but perhaps a hand now and then or understanding when I don’t always smile and you assume I’m just being a witch. I always joked that giving birth three times without drugs was my greatest accomplishment but this… this just sucks! Best part is as time goes on it only gets worse.

I guess you can call this my pity party for the day. Every now and then it catches up. Those days when I need more strength than normal just to do part of what I used to and yet I can’t. I am not weak! I’ve had moments of mental weakness but physical has never left me and now I no longer have that. *heavy sigh* My new life, just haven’t had the time to wrap my brain around it.

This too will not pass but as time does perhaps I’ll become more familiar as to how to better deal with it.

frustrated

The Very Angry Little Boy

I have a Joey! When he was just a tiny little he was known as the very angry little boy. Joey was angry because of his lack of ability to communicate in an effective manner. It’s almost as if he knew the words but didn’t know how to let it out, as he proved to be a very intelligent little and found ways to complete any tasks without having to ask for assistance. As the years went by this angry little learned how to vocalize and became less angry. He started to make friends, participate in group activities, moved (and succeeded) in a mainstream classroom and began to flourish. Of course there is no perfect, and there were steps back. One year he would receive honor roll and the next be held back. Things seemed to happen in waves but the one constant was his increased ability to communicate and that kept the anger away… until now.

In the last 4 months I’ve sat helpless as my little boys anger returned. I’ve spoken to doctors, teachers, caretakers and more in an attempt to find the root of that anger and chase it away. And up until today, my very angry little boy has been unable to express any remorse regarding his anger or actions but this morning, during his usual morning fight to avoid everything, he spoke. I was following him from room to room in an attempt to ‘corral’ him to the car and make it out in a timely fashion. He was very angry and muttering hurtful words to get me away. After an hour of fighting I mentioned calling the principal to talk with him. I’m not sure why I choose the principal of all people in the world, but I know in school he seems to hold it together better than most places, and thought perhaps an authority figure might be a good choice. I turned away for a moment but realizing my very angry little boy did not come back with a smart remark, I quickly spun around to ensure he wasn’t about to beam an object at me. What I saw was not my very angry little boy but a very broken one. He immediately burst into tears, and in true mama fashion, so did I. I reached out for him and into my arms he collapsed and the only words he cried was ‘I hate autism’.

I know he can’t always control things in his world and I can’t begin to understand what it is that makes him feel such isolation. It’s as if he senses a personal one on one, him against the world, and he is fighting with all his might to keep that door closed and us out. He hurts to such an extreme that he wants everyone else to hurt and feel his same inner pain… and I do.

As a mom, I’ll continue to protect, provide, love and support my very angry little boy and hope that one day he will just be my Joey!

Off the wall rant ahead…

When I started writing this whole blog thing it was just to have a place to come release all the frustrations. I knew that life would keep me super busy and my hope of being able to write a daily release wouldn’t be possible, but at least I would have a place to come when the world seemed to implode… so here I am.

Quick background to make it all make sense. 2 of 3 littles still home with me and an X hubs (very long ago) who doesn’t live with us but for the last 3+ years has been mostly vacant due to various out of state jobs. He’s been back for about 4 weeks now and due to poor planning, has resided on my living room floor. The littles have loved him being here, well mostly. We have a system, we are set in our ways, and this new being in our world believes HIS ways are better and has taken over.

Another issue, my lease only allows a party of three to reside here. Now he has come and gone a few times during this last stay so he hasn’t taken full residency but it did finally come down to me asking him to leave. I can’t afford to break up the one stability I’ve managed to keep going and losing this house would destroy us all so two days ago, during another late night insomnia fest I broke it all down to him.

Today is Sunday, the day he planned to go. I had hoped it would be an easy exit but last night he came to me, after a long day of ‘I’m talking to you, now I’m not’, and told me that I’m just so mean! This wasn’t just for asking him to leave, there is a reason we are no longer married and we are both at fault. Two different people who try to stay friends for the littles but when it comes to time together, there is about a 24 hour time limit on our ‘lets fake friends’ ability and he ALWAYS takes it to a level that I’m not comfortable with.

So back to today and him waking up to go… silent treatment again but my brain is in full processing mode and all of these words are begging to come out. I waited until he was in another room and closed the door behind us. Of course in his most sarcastic voice he says ‘oh great here we go again’. I didn’t want to fight but I wasn’t going to allow him to leave with me being the bad guy. I told him, you called me mean and you know what, I am mean but YOU made me this way. I had to become a lot of things each time you left on one of your far away, single man, work expeditions. I became not only mom but dad too for these wonderful little ones. Then I became a healer and each time you left them in tears I was there ALONE to make them better. I became a superhero and learned how to balance the daily schedule of school, activities, job and this damn illness I’m fighting daily. I became the magician who some how held it all together financially because your so called plan to work someplace else and help support your littles failed and the few hundred you donated to the cause wasn’t keeping it together. And maybe when you showed up all of the laundry wasn’t done or there wasn’t a ton of food in the fridge but it was enough to keep us going. Call me mean, I’m a big girl and I can take it, but know that this mean exterior still breaks down anytime she is alone because holding it all together for so very long has taken its toll.

I may not make the best choices in this life but they are my world and no matter how many times you up and leave for your own personal ‘find myself’ expedition I’m going to be here to pick up the pieces. You can leave angry, you can refuse to come help with their activities or provide monetary assistance and you can try and make me the villain in their eyes but one day when they grow up and look back  at each and every memory they will see that one constant… ME!