Received the letter

It’s not the first letter I’ve received from the geneticist but the hardest. The first one came a few months ago and it contained my test results; positive. I wasn’t surprised because we had discussed the results over the phone so I knew it was coming. And honestly, with everything else going on with my health this was just another word on the diagnosis list, *insert eye-roll*. Heck I’m already taking 29 pills a day and giving myself 8 shots a month so this didn’t phase me.

But that was for MY letter and this… this is not my letter. When she handed me the mail she wasn’t as passive as normal. The thick envelope seemed to intrigue her and she demanded I open it immediately. I did, even though I knew what was inside, just to appease her curiosity. Of course I played it off like the various letters were usual test results, bills and such and she grew bored and ran back to her room.

With this batch of letters I had also received a call prior but this time I felt I had to read the results for myself. The first one belong to the girl, my little tornado who was oh so curious when she retrieved the mail; negative. I knew she would be as I just didn’t see the same familiar signs. Then came the second letter. I took a deep breath, blinked the tears out of my eyes and proceeded to read; positive. The wave of emotions that I had fought with all week came flooding back. My son, like me, was also positive for the TGFB2 gene and there was nothing I could do to change it. I continued to sort through the other forms and found orders for an echocardiogram, retina specialist and the cervical spine x-ray. These are the first of several he will need as we start this new journey. I’ve already set-up an appointment with a cardiologist at John Hopkins Children’s. Monday I will contact his pediatrician and figure out what other specialists will become a permanent fixture in his life.

Now to figure out how to tell my son that he too has Loeys-Dietz Syndrome…

…trying to find himself

ASD is difficult, even for the high functioning, but for almost 8 years I’ve been able to give my son some focus via his daily dose of concerta. It isn’t much, only offers 12 hours of clarity, but it’s all we have. Because it’s a 12 hour release it makes mornings and evenings difficult at times. It means getting up for school is a fight, getting out the door includes verbal abuse and forget homework. Showers are a task, although once he is in he doesn’t want to come out; his own tranquility. He also finds peace under forts made with blankets and under boxes that find their way home. He will build himself a place to hide whenever possible and enjoys the quiet.

This is how it’s been for years. A roller coaster of ups and downs filled with laughs and tears, tantrums and breakdowns. Of course just when things seem to be on a ‘regular’ schedule in walks the hormones and pressures of becoming a teen. The last few months I’ve seen the anger increase and focus fade; more so in the last couple of weeks. The tantrums, inability to control his anger, depression, all increased to an uncontrollable level. He was lashing out, his own cry for help, to teachers, siblings, family, and classmates. It became extremely difficult to speak to him, as if he didn’t know us and had no remorse for the horrid words and actions.

Then over a two-day period it went from worse to catastrophic. In school suspension, leaving school grounds after specifically told not to (school function) and extreme verbal abuse with a family physical altercation. It was 48 hours of pure hell and left me with one choice… After he and his older sister struggled with one another where he continuously called her horrible names, I tried to get him to reason. His anger included taking his frustrations out on my car, refusing to communicate with more than one word answers and him asking me to call the police on him. He finally got into the car and through uncontrollable tears I managed to call a local child wellness center. As I cried into the phone I drove to their location. Continuously I asked him if this was what he wanted. I explained that it was not a punishment but a way to help him. Each time he said ‘whatever’ as if challenging me to do it. As we pulled up I again asked him again ‘is this what you want?’ and same reply. We were buzzed in and one of the nurses remembered our phone conversation. She explained the intake procedures and the terms of ‘baker act’. I asked for a moment so that my son and I could chat. The answers were still one word but he was calm. I, on the other hand, continued to speak through tears.

Again approaching the counter I asked the nurses opinion. She heard my conversation, knew some of the issues and suggested we at least stay for the evaluation. At least another 45 minutes went by while we waited. Finally my son said ‘I’ll tell you what’s wrong in the car’. This gave me a glimmer of hope as I had continuously asked him who or what was causing this new rage and disrespect. After what seemed to be an eternity I agreed. I explained to the nurse that we were going to talk in the car but that I also wanted information for outpatient therapy. She told me the what to do should it become worse and how to have him brought back in should we feel unsafe.

He and I left and we talked while we drove. He explained issues with classmates and teachers that he didn’t enjoy and I explained how respect was earned and if he gave it he would get it in return. I know these confessions were not the whole reason for his actions and that he had outgrown his meds but for the moment my tears left and his smile returned and that was such a needed relief that I gave in. Things have been better since that moment but still have some attitude. This week we go back to his psychiatrist and he gets to hear this mama bear roar. I did try calling him a few weeks back when things started to go down hill but he offered no assistance. I also called after Hurricane Irma came through and I was forced to cancel my son’s appointment, as the new time was two weeks out and he would run out of meds. Needless to say the lack of response left me to handle things on my own.

I decided after the above event to pull my son off of his meds. I told no one. I didn’t want family, friends, school or anyone else with an opinion to base (or blame) his lack of medication for any actions. It’s been a struggle but making it work. His focus is gone but he seems mostly happy and the outbursts have gone down but I know we have our work cut out for us. This is MY baby boy and I will do whatever it takes to get him through this, and whatever else life throws at us. He will succeed and he will find happiness and peace.

I’m happy to say I haven’t had tears since that night and even joke that the well ran dry. Life is a struggle and autism doesn’t make it any easier but as a family we will survive!

~Just t

So Many Questions…

Ever wish you knew more, had better answers, perhaps a crystal ball into a world of truth? Yes I know we have computers and google and everything at our fingertips but without the learned knowledge of a subject there are so many conclusions that can be poison to an already struggling mind.

A few months back we did a biopsy of my lymph nodes. I’m used to going to the ENT and getting these biopsies but generally it’s my thyroid (or what’s left of it). This time, when he was about to do the usual he noticed something. My lymph nodes were extremely swollen and cause for concern. I honestly didn’t pay much attention to the results, perhaps I didn’t want to know. Maybe there was enough in my world screwing up my health and one more thing just didn’t fit. Regardless I stepped back into the files this week and at that very same moment, I received more results from blood work.

When you see all of these things individually they can lead you to a number of things. High inflammation that seems to get higher each month; RDW elevated this month, previous month WBC elevated. Many other ups and downs, but with an autoimmune disease, and a game of test the new meds, you tend to get a lot of that. Where I get the concern is when you add to the above, the results of the lymph node biopsy.

  • Lymph Node: Left Level II; Fine-needle aspiration

So back to that crystal ball that shows the future… then again I suppose a PH-D would work as well. I’m sure I’ll get a call next week to discuss, and there are so many more appointments before year’s end to check and recheck all of the above but right now, at this very moment, is when I have the concern, the what if’s, the desire to have answers.

Until then there is no point in telling my family about any of this. Regardless of my fears I don’t need them to have the same. For now I’m okay. Not great, not cured, but the pain I do have is mostly bearable and I take a ton of meds for that gift. Today it’s just a vent, need to tell my concerns to someone while I play the wait and see game.

~Just T


The Dragonfly

Last week I had a few very bad days… so bad that stopping to write, although a great way to vent, was not an option. One of these days was a breakdown of me. It was just an overwhelming, life’s winning, take me out coach kinda day. Everything seemed to be starting in slow motion, including getting out of the house. As I started the car, with tears flowing and darkness hoovering I see a dragonfly on my hood.

I continue to back the car down the driveway and head to the littles school still a mess. Two turns and make it to light at main road and realize my little dragonfly is still there. He’s almost hoovering above my windshield facing towards me. At the next light I thought for sure he would leave but nope, he stayed with me for another few blocks and in my own little world, he became my comfort.

I know to some it sounds crazy but I always tell my littles when you see a butterfly it’s those we’ve lost stopping by to say hi and remind us it’s all going to be okay. This particular morning I thought about that, about how this little dragonfly was visiting me just when I needed it most and that maybe, just maybe it was someone looking out for me. I remember actually saying ‘it’s okay you can go I’ll be alright’.

Sometimes we need a reminder, when all things seem to be going wrong we just need that ‘dragonfly’ to just let us know that we are strong, we can do this and we are going to be just fine. I don’t believe in a god but I do believe in the universe and know that it will always come together.

Methotrexate… Could this be the fix?

I’ve been taking a pill form of Methotrexate for sometime now. Unfortunately my symptoms continued, even with my weekly ‘Sunday Funday’ dose of eight pills. This, along with the other meds that I take, is supposed to help take down my immune system a notch and decrease some of this inflammation. The side effects from these lovely little pills include more exhaustion and nausea, things that I have plenty of. A month ago we made the choice to switch to injections and now my weekly dose includes me and a needle. Nausea still around, being tired is a regular thing, although a tad better than before.  Fingers crossed that I’m not jinxing myself but either I’m feeling a little less frequent pain or my tolerance is growing.

No I’m not being a negative nelly I just know that getting my hopes up is a sure fire way to conjure up a flare… been there, done that. Touching is still iffy, and it saddens me that when I hold my youngest grandson (9mths) that each time his foot or hand push into my leg I feel the pain shoot through my body. Joint pain is there and seems to travel. Today it’s visiting my hands and knees but who knows what tomorrow will bring.

So this is my life, this is me hoping that we found a fix but I’m told that we will increase the dose soon and to me that means we aren’t there yet. I’m going to continue to fill my many scripts, take the recommended vitamins and see what happens.

Tonight wasn’t any amazing words of wisdom but sometimes we need a shoulder to vent to, even if it is virtual.

~ Just T

Her name is Sonia 

Last week I stopped at my PO Box on the way to the office. I briefly went through the pile before leaving and noticed the envelope I had been expecting. I knew it was coming but as I read through the words ‘Permannet Disability’ it all hit me and the tears started to roll. 

It was just all so confusing. I know it was just for a disabled parking permit, and maybe I should have been happy that during the days when walking is so difficult, I now have a solution… but I wasn’t. These were tears of fear, tears of the inevitable and unavoidable. 

In and attempt to rip off the bandaid, I made an appointment with the DMV. I arrived, signed in and waited for my number to be called. When my turn came I walked over to the desk I was assigned, sat down and handed the woman my form. She didn’t make eye contact, kept her words to the point, took my drivers license, filled in the information and had me sign before walking away. 

That’s when it became real. I blinked a lot, trying to hide the tears but as she returned and sent down one managed to escape and slide down my cheek. The woman of no words, with the cold eyes suddenly changed her expression and responded ‘Do you have bad knees?’  

I mean after all, the form doesn’t ask for specifics and mearly has the doctor list if it is a temporary condition or lifelong. I walked in on my own, no visual signs of impairment and even I felt s little guilty that I might be taking this from someone who needs it more. 

I explained briefly that I have a connective tissue disease that causes my immune system to attack ME and that sometimes walking is difficult. It was like a lightbulb turned on in her. She suddenly went from cold and quiet to this amazingly compassionate old friend that I hadn’t seen in years. We talked about everything from her husband who was in the service to her mother and insurance issues and even about her own health problems. 

We shared ideas, opinions and stories for about 45 minutes. I kept waiting for a supervisor to show up and scold her for taking so long with the appointment but no one ever did. She gave me a shoulder, made me smile and left me with hope. She went way above and beyond what was required of her and I am so grateful she did. We said goodbye and I made it back to my car. There were no more tears just a smile and memories of someone else who crossed my path and made a difference and her name was Sonia. 💜🌺

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…




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