Thursday, May 23, 2019

Tessa's Graduation

Over eighteen years ago, I gave birth to the most beautiful baby girl. She was perfect. I should have known that I was in for one heck of a ride parenting her. We’ve had our ups and downs and she’s had her own personal struggles. Through it all, her light has never wavered and has always shone brightly.

She is my own version of Scarlett O’Hara (I so should have named her Scarlett…it would have been fitting). She’s always been extremely head-strong. She always has to learn things HER way, even when you try and protect her. I’m sure I didn’t show her enough of the love and affection she required, but I’ve always tried to do my best.

From an early age, I’ve watched her grow into one of the smartest kids I’ve seen. She’s “people smart”. She has charisma and charm. I’ve always told her that she could use “her powers” for good or evil. She just has that “it” factor people talk about. 

Never one to like school, not sure if it was the atmosphere, the regimental structure or the actual work she had no real interest in, but she’s always thrived in the arts. Whether she’s drawing, painting, acting or singing, that’s when she shines her brightest.

As a mother, I worry that I still haven’t prepared her for adulthood. There are still so many things she doesn’t know or understand. I think most parents have those fears. I also fear I have stifled her creativity. I want her to reach for the stars. To do what she loves. To say the hell with what other people may think. I want her star to shine as brightly as I know it can. I want her to inspire others. I want her to be a good and decent human being. But most of all I want her to be happy.

I could list the hardships she’s overcome and the life lessons learned about the ugly side of human nature, but I think the most important thing is that no matter what life has thrown at her, she has kept going. She will be walking across the stage tomorrow night to receive her high school diploma. Her friends and family will be there cheering her on. I will be there bawling like a baby, but so very proud of her accomplishments. This is the end of one journey, and the beginning of her next journey.

I can’t wait to see her take on the world.

 We love you ALWAYS!

Friday, May 10, 2019

Be Forewarned...I'm Whiney!

I have been sitting with this laptop open for what feels like hours. I started writing, got a page in and stopped. I opened up my writing file and looked at so many ideas, either waiting for a beginning, or started and abandoned. The only thing I seem to be able to focus on right now is the pain and lack of any energy. Also how much I love steroids, knowing I can’t take any.

Steroids (Prednisone) seem to be my new best friend. With them, I can almost pretend to be normal. I’m still limited on my energy stores (think of it like a video game, when that energy runs out, you are done). I can at least walk from one room to the next without feeling like I may pass out from the exertion. I’m on day two of what I refer to as “a bad day”. Everything hurts, I have zero energy and I just want to cry (I usually don’t, I was raised not to throw pity parties for myself).

I would like to think that me writing about the only thing that seems to be on my mind is at least knocking some of the cobwebs off of the creative process. I want to write, but I’d prefer to be writing fiction. Doesn’t seem like that’s happening though, so I’ll take what I can get.

I’m saving up my steroid usage for the next few weeks. Tessa (my third child) will be graduating high school, so we have all of the graduation festivities that I’ll need to find the energy for. I miss the days of caffeinated drinks being all I needed for an extra boost of energy. 

My two youngest are all that live at home now. I know they say they understand when I have my bad days, but I’m not really sure they do.I really don’t think anyone who hasn’t experienced this type of debilitating chronic illness really understands. I know I didn’t. 

I get lots of advice though. Eat this, don’t eat that, take this vitamin or that supplement. Exercise more, stand on your head, spin around whistling Dixie. I know everyone always means well, but I really just want somebody to come clean my house and leave me alone.

Okay, I think I’ve done quite enough whining, and to be honest, just sitting here typing has worn me out (stupid, I know). I guess it’s back to mind numbingly boring TV. I need a better hobby. Too bad it’s about the only thing I can do, besides sleep, on bad days.

Wednesday, April 17, 2019

I'm Baaaack....Kinda.

Let me preface this post with a "bear with me". I'm rusty to say the least. I find it hard to believe I haven't posted a single blog post in going on four years. I'm pretty sure I'm going to have to relearn blogging settings, typing and just articulating what I'd like to say in an understandable format.

It's been four years since my last post. My world has changed so much. Some things remain the same. I still have the best husband in the world who I adore and love more than I ever thought possible. Especially now.

My body has decided it doesn't like me very much. I guess I can start with my "known diagnosis", and backtrack to the beginning of this medical insanity, September of 2016.

  • Rheumatoid Arthritis (RA)RA is an autoimmune disorder, which means your body attacks itself. If you have RA, your body interprets the soft lining around your joints as a threat, similar to a virus or bacteria, and attacks it. RA is a systemic disease, which means it can affect your entire body — lungs, heart, eyes — and not just your joints.
  • Fibromyalgia. A condition that causes pain all over the body (also referred to as widespread pain), sleep problems, fatigue, and often emotional and mental distress. People with fibromyalgia may be more sensitive to pain than people without fibromyalgia.
  • Peripheral Neuropathy. A result of damage to your peripheral nerves, often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body.
  • Sjogren's Syndrome. An autoimmune disease, your immune system attacks parts of your own body by mistake. In Sjogren's syndrome, it attacks the glands that make tears and saliva. This causes a dry mouth and dry eyes. ... It is sometimes linked to other diseases such as rheumatoid arthritis and lupus.

After two and a half years of more tests than I'd like to count (or remember), two regular doctors, a rheumatologist, hematologist, neurologist and orthopedic surgeon (to treat injuries from a catastrophic fall down the stairs), I'm better in some aspects than when I originally had the rapid onset of symptoms, but far worse to the point of often not being able to simply walk from one room to the next without being able to breathe and having zero energy to walk the short distance back to my recliner or bed.

Looking back, I was struggling for a few years before the rapid onset of the extreme pain that facilitated the start of the testing and specialists. My feet would hurt after short periods of walking or standing. I had a bit less energy than I once had. I blamed most of it on old age. It wasn't debilitating enough to cause anything other than annoyance. I have moved way past annoyance. Even now, I struggle to sit in the computer chair and type. I do have a laptop, which I guess I should learn to use, but I just prefer the PC. That being said, I do believe I'll rap up this post and try and revisit in the next few days with more of my whining. I'm actually hoping this process will be, at the very least, therapeutic, and will motivate me to start writing again (God knows I have the time).