My Son and His Son’s

Posted by twinklev

I shared previously my excitement of being a Nana again.

Many of you know my son from our advocacy days together. Others know him from his music and lyric. Perhaps some of you know both.

Ozra joined me in CRPS/RSD and health advocacy in his young youth. In fact, my oldest grandson did, also.

My son’s hobby is music, writing verse, performing. Expression. He had a severe traumatic brain injury at 14, so I’m quite proud of him. The majority of people can’t tell that he lives with residual damage to his brain. It’s an invisible disability. In addition to the other brain injuries, his frontal and temporal lobes were danaged. He attended speech therapy for some time after his lengthy intensive care hospitalization.

He hasn’t been able to smell since. It’s been 10 years.

His 2 year marriage anniversary was July 1st. His beautiful, loving, supportive wife conceived Ezekiel a few months later and Greyson was within a few short months of Zeke’s birth.

Ozra with his son’s. Ezekiel, 13 months, and Greyson, 1 week. #StrongerThanPain

His school implemented a 504 Plan for him. I never applied for disability for him.

The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.

He wasn’t allowed to return to school for several months after recovery and healing. He then returned briefly and it didn’t work out. They encouraged the filing for disability and labeling him. Separate segragated learning instead of main stream with all his peers. Nah. This might be a good thing for some children, I don’t know. It wasn’t for us.

I removed him from public school and home schooled him until he graduated high school. He never really attended in person high school. Initially he was a semester behind, yet he recieved his diploma on time.

His teenage years was filled attending Church, youth events, and volunteering. This let him be around people and build his social and communication skills. He did miss out on those high school years though.

Some people were like wow with his first son, and then double wow with his second. My son is 24.

I’m overjoyed!

Times were different but I had 2 daughters 12 months apart by 20. He has 2 sons, 12 months and 3 weeks apart at 24. Perfectly okay.

He’s always earned good money. He began working soon after his TBI recovery. He was 15 then. He earns a good living even now. His wife earns well, too. Team work makes the dream work.

See why I’m proud? And ecstatic?

I can’t help but wonder if I had listened to the school and complied with the status and decisions for my child if my son would have ever excelled in the capacity that he has.

My gut tells me he would not have.

4th Grandlove

Posted by twinklev

I’m a Nana again! In 2020, we had our one and only grandson of 14 years. Now we have 4.

All boys!

Our oldest turned 15 in early February.

Ezekiel and Zy’Aire were both born in 2020.

Greyson was born 2 days ago.

Our oldest grandlove De’Mantai and Zy’Aire are brothers from our oldest daughter, Kharisma.

Ezekiel and Greyson are brothers from our only son and last baby, Kurtis Ozra.

Our second daughter Rikki will most likely never have children. Both of our daughters are in their 30s.

I prayed for this! I can remember being so distraught over my husbands 3rd and 4th heart attacks in 2017 and 2018 that all I could think of is Dear God please give us more grands in our lifetime.

Our oldest grandson lit up our lives. He was born shortly before my husbands first heart attack. The quadruple bypass open heart surgery came shortly after the 2nd in 2012.

Answered prayers.

Ozra’s 2 sons carry on our name, naturally. My son was the only one to carry it when I gave birth to him. There is another now to carry it as well. Our nieces son, our nephew. He has the family name rather than his father’s.

I’ve been physically limited the last few weeks, more so than normally,, and other than 30 minutes about 9 days ago, I haven’t been able to resume my water PT.

My hair was in a braids bun for at least 10 days. Uncombed, messy. Didn’t care. It was the last thing on any to do list. The important things I had no choice but to do. Getting myself to the bathroom was one of them.

The day Greyson was born I soaked in epsoms and combed my hair out. That was a chore of its own. I went to the patio where my kiddie pool is and just embraced the sunshine, celebrating Greyson.

I couldn’t lower myself into the water, but I sat there in nature thanking Jesus for my blessings. I snapped a selfie so that my new grandlove will know, in the future, that he was my strength that day.

A few people told me I didn’t look old enough to be a grandma. That was kind of them.

I’ve been a Nana since I was 37. I’ll be 53 in about 3 months.

God is good.

All the time

Self-Managing Comorbidities

Posted by twinklev

I keep trying to make a positive difference in managing my life for CRPS with comorbidities. I’ve been doing low carbs since March. I’ve attempted my usual summertime physical therapy using a kiddie pool. I do this each year.

Inside the water I can do 20 push-ups! Outside it, zero. In the water, 100 leg slides. Well, that’s what I call them. Outside the water, barely a handful.

I’m always thinking that if I can do enough inside water that it will benefit me outside. If water wasn’t weightless, I couldn’t achieve these.

As far as low carbs, I’m not doing Keto really. I’m just extra mindful of my carbohydrate intake. Generally, staying around 35 net carbs daily.

My kidneys and colon have a hard time with lower carbs. Meat and cheese is my enemy. Our western diets can cause Diverticulosis, or at least contribute to it. I’m sure it contributed to mine. The last time I did low carbs I had intensely painful bouts of Diverticulitis. It took months to settle down entirely.

This time, my right kidney threw a fit. My kidneys are at about 50 percent of normal function. I’ve self managed it fairly well since diagnosis approximately 8 years ago.

I was diagnosed with NAFLD about 10 years ago. I wasn’t drinking alcohol back then.

I’ve already had part of my liver removed for hemangioma, tangled blood vessels. It was during a surgery to remove a remainder of Gallbladder left behind from a Gallbladder surgery a year prior. There’s still more masses on my liver that wasn’t removed.

I haven’t had much pain there since Manual Ligament Therapy in late 2016, early 2017. The therapy was for my CRPS and Spine, but I recieved benefit for other issues, including Gastritis.

Unfortunately, my belly does swell horribly at times, but pain there, for the most part, has been manageable.

I’ve been praying less weight will equal being easier to weight bear. Less impact on my bones. I’ve had Juvinile Arthritis and mild Cerebral Palsy since the beginning of my life.

I don’t know if I had Scoliosis earlier as well, I wasn’t formerly diagnosed with Levoscoliosis until 2016.

What I do know is there’s too many sprains, strains, and fractures, and I’m not entirely sure how to keep them from reoccurring. My muscles are weak. I’ve had vitamin D deficiency for several years, and do take OTC supplements.

Water PT gifts me natural D, sunshine, and nature. It’s a win win when I can get to my patio for it. It’s also my favorite time to thank Jesus for all he does for me, and with me.

Today I remind myself that no matter how it may seem at times, or even how it feels…

I am perseverance; I am resilience.

I am Stronger Than Pain.

Adjusting the volume on Pain and Emotions

Posted by twinklev

I’m still sober. As some of you know, I was drinking to relieve pain associated with CRPS, nerve damage, neuropathy, spinal disorders, and a handful of other things. I’ve also mentioned that while it did help some it also worsened my depression.

In heightened pain, I over think. The worse for me is reliving old traumas, or becoming anxious over things I’ll never be able to change.

We’ll never be able to change anything in the past. We can only change today.

During this sobriety, I’ve been struggling to cope with a situation that developed prior to me quitting drinking and has escalated since.

I’ll need to be vague in order to express myself. I’m not able to reveal what it is. Not here or anywhere else.

It’s not something that I’ve done and it’s not directly related to me yet it is a heavy hurt to carry.

I previously spoke of distraction. This is also something I very much need to be distracted from. I feel deeply pained over it and heartachingly helpless.

If this would’ve happened 3 years ago, I’d have most likely had a drink over it. I’d have lost my shit over this much more than I already have.

I’ve adjusted the volume on pain and emotions.

If I don’t keep myself emotionally stable I’m no good to anyone. This much I know. I do minimize often. In this regard, when someone asks how I’m doing, I just say, okay, or something similar, sometimes with playful rhetoric.

Aren’t most of us the same? We have no one to really talk to, who’ll remain loyal. And we often tell one another “You’re not alone”. The problem with that is that while it’s a nice thing to say, many, are in fact, alone. Some people will listen just to gossip or reveal you to others. The person we could trust, we hesitate to reach out because we don’t want to put our crap on them.

Venting doesn’t help and revealing provokes commentary and opinion.

I know I’d have the support of many with love, care and prayer and I also know that the lurkers and stalkers that don’t support or offer kindness for anything, yet watch your every move, would have a field day as if they’re some kind of perfect in there own lives. Some thrive on judgement.

You might wonder how adjusting my volume on pain and emotions help me. It’s the peace comes with it. No drama comes of it.

The downfall is keeping parts of our lives to ourselves and therefore going through things alone.

Sharing positivity, inspirations, funnies, and my grandchildren are generally the best way out of emotional moments for me. On Factbook, and social media, that is.

My physical self just continues to decline. Depression, I have to keep tucked away or honestly I become more depressed. Let’s face it, a lot people don’t much want to be around unwell people. It doesn’t matter if its physical, mental, alcohol abuse or addiction. I can hardly blame them.

The hardest part of this is that I still have no medical help for my life and so I’m limited in what I can do and the main reason I can’t do what I may have otherwise been able to accomplish with medical assistance.

I have no choice but to endure. I just pray that eventually life’s pileups ease and become less frequent.

I need a break.

Pain Distraction

Posted by twinklev

This is an important piece in my toolbox. More than ever. It’s always been of value. For many years, advocacy, writing, and poetry were my main distractions. These allowed me to be of use, contribute to society, and nudge my mind in other directions. Limiting focus on what I felt.

Laying up in my own thoughts certainly didn’t help whether a moderate or severe flare or an acute injury and situation. Over thinking can be brutal.. Physical illness with chronic intractable pain is a vicious cycle of depression and anxiety rotating in and out of an already weakened state.

It seems like I’ve already spent a lifetime trying to manage and adjust these cycles.

While my plate remains full, most of it has been replaced with better options. Like any plate it depends on what it contains.

At this point, I couldn’t add any more to it or it would spilleth over and that’s where taking on too much happens. It’s a crash waiting to happen for me.

My three main distractions have become routine.

1. Pray. For myself and others.

2. Church. I’ve attended, online, each Sunday for 16 months.

3. Spanish Lessons. 52 consecutive weeks. 415 days to be exact.

Each of these are from home. It’s hard for me to take on more. I do wish at times that I could. I’ve learned not to dwell on that.

All of our food is home cooked. That’s a daily do. I’m grateful to my husband for the day’s he either gives me a break or steps in when I’m physically unable to accomplish it. Our dogs also have to be fed, and cared for, and that’s daily of course.

Physically, I do as much as possible early mornings. By 2 p.m. I’m struggling . Dinner is generally ready and served by 3:30 p.m. unless my husband is delayed at work. By 5:00 p.m. I can hardly budge.

Shoutout to my crockpot for always having my back.

And to each of my grandson’s whom I love dearly. De’Mantai, Ezekiel, Zy’Aire, and my newest, Greyson, who’ll be born this month.