Monday, March 30, 2015

Update....

Through the months, many have asked why I do not blog anymore. In all reality, lack of time was my primary reason, however, after spending so much time catching everyone up via email and FB, I think blogging is less time consuming!

I'm going to change things up a bit and just do a brief outline with more details coming later. I'll break down the individual points into more detailed blogs later.

Also, I'm going to veto keeping the children's individual blogs updated and put all the information here. You'll be able to search the blog via keywords though.... so if you are here looking for info on diabetes, just search for that word.


First, let's address the children.

My eldest is in his second semester of college and is doing great. Due to his Aspergers, we had to obtain him a tutor that would prevent him from doing too good of a job. Yes, you read that right. He would fixate on making his work perfect, and in 3D modeling perfection can be very time consuming. His tutor tells him when it's an "A" grade and time to move on. Well, his tutor is very helpful in other ways as well, but that was our initial reason for acquiring a tutor.


In addition, his Type 1 Diabetes is still difficult to manage. It's never easy having Type 1, however the Aspergers means he's unable to make executive judgement calls when it comes to managing his diabetes.   Due to his being so skinny, his CGM (Continuous Glucose Monitor) isn't effective and gets false readings regularly. I'll explain this more in a future blog.

Also, another diagnosis of chronic depression and anxiety has come on board resulting in our finally opting for medication. We're only on week two, so we'll see how it goes.


My middle child, as always, is excelling. I'd lose my mind without her. She has so much responsibility yet takes it in stride. She is a straight A student this semester and is working towards her dreams. Her dreams, although the same since 2 years old, have changed. Instead of being a veterinarian working with abused and neglected animals, she intends to be an Animal Behaviorist rehabilitating abused and neglected animals. Yeah....that's MY GIRL! :) I have no doubt the change in her interest came as a result of our having to put down a dog that had killed two dogs and injured two others. Rehabilitation services would have costed us $5k that we didn't have, and didn't seem to be able to raise. It impacted our entire family deeply and was the stimulus to alter her focus.


My youngest, well, he's still high maintenance. He's always moving though has slowed down some due to a back injury. Raising him is a tough job, and many days I'm dumbfounded by his perfect logic. Of course, perfect logic doesn't fit into this society so it's often difficult for him to comprehend what is considered appropriate and what is not. I often hear him say that he wishes he were not Autistic. :( Again, more details later.

Now, as for me......... I have a new diagnosis that consists of nerve damage in my arms/hands due to inflammation within the elbow. It's very painful and driving, typing, writing and any repetitive hand/arm movements make it worse (another reason I've not blogged as much). I have to have an EMG done, which is a test I swore a decade ago I'd never have done again. It's painful, and no fun, but we have to determine the extent of the nerve damage to determine how to proceed.

Nothing else has really changed health wise. My MCTD still kicks my butt. I still have to spend entire days in bed and watch my house fall apart. I still end up in pain that is so bad I would crawl into the Grim Reaper's embrace should he appear beside my bed at those times. I still look for the beauty in every day and cling to that beauty as my "happy thought". I still laugh about it, cry about it, and wonder why I can't remember what it felt like not to be in pain.

However, I graduate this May. It took longer then it should have, and lots of extensions from various instructors, but I did it. Yep, I'll be graduating college! I also am going to be starting my own business since my health and my children do not allow me to work a 9-5. I have an investor that will make this possible and I'm beyond psyched.

Also, I've been in a dating relationship for almost a year. You may have seen me write about dating with chronic illnesses, and/or dating with children with special needs. Maybe you've read what I've written about dating when you suffer from PTSD due to past abuse. Let me assure you, it is not easy.  However, I feel that I have grown more in my time with him then I have in the last couple of years. I've written before about how I felt I had hit a plateau in my personal growth as I wasn't able to put what I'd learned into practice. Well, now I have and it is a hard road. Yet, nothing that I've ever had in life that was good came easy.


He and I work. We are good for each other and when we set our minds to it, we make an amazing team. He gets along well with the children.

He doesn't understand me. He's had an easy life. He wears beautiful rose colored glasses that leave me amazed, dumbfounded and even infuriated at times. Yet, his rose colored glasses are helping me to remember that life isn't difficult for everyone and that is a big part of why some can't understand the struggles of others. His rose colored glasses keeps me from hating mankind.

His rose colored glasses also help me to see things from a perspective I was never afforded. He believes in things I deemed impossible before I was even out of elementary school. He tells me that he is a realist and I believe in fairy tales. Yet, in my mind, I see him believing in fairy tales and I the realist. You see, we balance each other out and each bring to the table something that the other hasn't been exposed to.

I always thought I had to be with someone that had been through horrible things. How else could he understand me? Yet, this relationship has taught me that I was wrong. Don't get me wrong, he's not perfect, and he has plenty of baggage from his past relationships that he is working through as well. However, at the end of the day, he doesn't have to understand me to love me. He doesn't have to understand me to support me. Just as I love him and support him yet can't understand how he can wear those beautiful rose colored glasses, he can love and support me without understanding why I view life as a dark journey where one must actively seek the beauty.

Opposites may not attract, but they can co-exist together. It's a difficult journey, but, in our case, is having the most magnificent results.

More updates coming soon. I know that there are many that come to my blog because they want to know they are not alone. Those that come just to read my struggles with chronic illness. Those that come to read about raising children with special needs children. Those that come to read about PTSD. I know that I clammed up over the last couple years, and left a lot of people feeling abandoned. I didn't speak out much about what caused that to happen and in all reality, not quite sure I want to now.

However, I will make my best effort to be there NOW. I can't change the past....but I am always changing my present and future.

As always, to all those that are recovering from substance abuse, have survived rape, gang rape, domestic violence, child abuse, molestation, religious abuse and the like.... you CAN move forward and have good things in life. Keep your chin up. You are worthy.

To those battling chronic pain and chronic health conditions.....you too can have good things in life. Don't give up. Fight the fight with every breath. You are stronger than you believe.

This one is for the full time single parents raising children with special needs......that would be the parents that do not get time off when their child visits the other parent, nor do they get child support, nor do they have family support to assist.....there doesn't seem to be many of us out there. Our lot in life is unique. No one else can understand what we go through and each time we hear people tell us we are an "inspiration" or "a superhero" or "amazing", we secretly want to punch them repetitively in the face. Remember that you aren't alone. I'm here and I know your struggles. I know the tears you cry, the times you hide in your shower, and the times that you are certain you will die from exhaustion. If you, like me, suffer from your own health issues on top of it.....well, we are a very elite group that are scattered around the globe. Just remember, you aren't alone. Never alone. There are always those that look up to the sky and wonder if anyone else knows what they feel like. And the answer to that, my dear friend, is yes.




*****All photos courtesy of Rena Linder******

It's Your Body.....Not Hers

I keep seeing all these women post about getting their genetic markers tested so that they can opt to have surgeries to remove ovaries, uterus, breasts, etc. Most all of them quote that ‪#‎AngelinaJolie‬ did it.
PEOPLE: Angelina Jolie also stated, "I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery."
Just because someone famous does something and everyone raves about her courage and bravery, this is not an indication that you need to do the same. There is a ton more factors that go into deciding if surgery could aide you. And believe me, having your ovaries yanked out is no fun. I still have one that partially works and it can be hell.
People, GET EDUCATED. Quit following the media. If you are going to follow stars medical procedures, then at least have the intelligence to go to the source (link is Angelina's own statement versus the warped versions of the media). And remember, just because someone else chooses something it doesn't mean it's best for you.
Fear is a powerful stimulus. Unfortunately, it often leads to irrational decisions.

Read Angelina's Account: Diary of a Surgery

Tuesday, January 13, 2015

Thugs Destroy........

Conversation that just took place with my children: 
"Hey guys, there was a riot yesterday. 8,000 people bombarded a building and several hundred made it in. They destroyed property and set 89 fires. They refused to leave when police arrived. There was even gunfire reported. What do you think happened?" 
My daughter and son looked at me in horror. My son shook his head slowly as he looked downward and my daughter asked in a quiet voice, "They shot them all dead?" 
I paused before answering as they held their breath. 
"Only three canisters of tear gas was used and only a handful of arrests were made," I replied. 
They looked at me dumbfounded and confused. My daughter's face lit up and said, "See, I knew all cops aren't racists against blacks! There are good cops out there!"
At which point I let her know that the rioters were not blacks. They were whites celebrating a football game win. (Our family has had a lot of conversations about the riots/protests since August so her assumption was not based on her thinking only blacks are rioters, but based on our many conversations concerning racism in this country). 
My son looked at me confused and said, "Wait a minute, it's OK and legal if you are celebrating but not if you are protesting?"
I didn't reply. I let them set there a minute and think it through. Then, they begin discussing how different it would have been if blacks had done that instead of whites. 
************
*Over 90 FIRES set by rioters
*Aprx 8,000 rioters(yes, that's eight thousand) swarmed a stadium
*Of those 8,000, there were several hundred that were successful in getting past police and into the stadium
*Property was destroyed by the rioters
*Rioters FIRED GUNS!!!
*Rioters refused to leave the area, resulting in tear gas being deployed.
*Arrests were made.
*No one was killed.
*National Guard was not called in. 

These rioters haven't made the news near as much as one would expect in a country that has been riveted to riots of late. As a matter of fact, despite the large numbers and the violence, there were only 3 (yes, that's three) canisters of tear gas deployed and only a "handful of arrests". 
Also noted was Fox News headline of their coverage: 
"89 Fires Reported near Ohio State's campus in post-game revelry"
Ummmm..... wait.....what??? 
WKYC Headline: "Police respond to victory celebrations on Ohio State campus".... also, "Police respond to rowdy fans in Columbus"
USA Today: "Police respond to Ohio State victory celebrations"
Washington Post: "Things got rowdy in Ohio"
John Brown, Fox35, Host of Good Day Orlando tweeted "Riots after the ‪#‎OhioState‬ game! If anybody should be rioting, it should be ‪#‎TCU‬!"
Across twitter there were people making predictions for the last month such as Micheal G (@mgump), a Trial Lawyer & Conservative Policy Advocate from Georgia, "Ohio State better make the playoffs! Buckeye Nation could start riots after all! ‪#‎justiceforOSU‬" . 
My personal comment (which I am sure is echoed by many), "Don't those thugs realize they are tearing up their own town? That's what happens when you get kids raised by poor single mamas cause their dead beat daddies ain't around". 
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