My family Week in Review – July 12, 2015

Posted by twinklev

My family week in review July 12, 2015 – July 18, 2015

Part 1

Mom didn’t arrive from Georgia until Monday evening on the 13th.

I seen her walking toward our parked vehicle. I was so excited as I hurried to try to make my way out of our van to the tiny form in a distance. Kharisma reached her before I did. As I continued to approach, I saw my Grandma. Suddenly, I thought I might be in a dream within a dream. When I hugged her for the first time, I really did hug them both in the flesh. I could feel the energy. For the initial embrace it was only my grandma (my moms mom) I was holding onto, who I had my arms wrapped around. This little woman was hugging me back tightly, but I wasn’t understanding where mom was and in the same instance, by and from grandma, I could feel the energy transfer, I was given my mother. And the tears rained. As sudden as they fell, they retreated. Mom was right there. If I was dreaming, I had woken.

My mom has lost over 100 pounds. She’s been in kidney failure for a couple of years now, but is not going forward with dialysis. The bottom of her heart is dead, the reason for the emergency pacemaker placement just weeks ago. I’ve been trying to find a way to get to Georgia, but prevented by obstacles. With my daughter’s diagnosis, they planned to try to come to us instead. Mom wouldn’t postpone. Dad got her here.

Mom hadn’t been back in Sacramento in 12 years. She had planned a visit that turned out to be for the funeral of her sister, instead. My Auntie’s passing July 17, 2003. My uncle took her off life support to relieve suffering on their wedding anniversary.

It is overwhelming to create so many new and wonderful memories with your mama, yet at the same time try to cope with the ache, heartbreak and understanding that forever is right now.

When I was a teen, my dad was diagnosed with lung cancer. He was 47, I was 15. He had a partial lung removed. Eventually recovered. He made it the 5 years. Suddenly it returned so aggressive by the time it was found it had eaten his ribs and broke through his posterior chest wall. 5 weeks from the time we learned it came back, to his death. By this time, I was 22. My mom and dad were managing a motel in Chico CA. I was driving back and forth from West Sacramento to Chico, 2-3 times a week. Instead of putting my dad in a home to pass away, I had him transported by ambulance to my and my husband’s home with our 2 little daughters, ages 2 and 3. Hospice came in to help me. We turned our living room into a hospital room of sorts. A hospital bed, trapeze, hoist. My dad was already paralyzed from the waist down due to the cancer. I was his caregiver. Both of theirs really. Both mom and dad. He was a no code. I remember in the hospital when they were discussing his options, I wasn’t having him going to a care facility to die. And I knew already in my young life how it must feel to have to go away, be sent away just to die somewhere unfamiliar. I told him I would take care of him, both of them. His wall came down and he said “there is no place I would rather be than to be with you”. There was no place I rather them be then with me, too. My dad raised me strict. I never defied him. So when he was adamant about his “no code” I had to be so very strong to uphold his wishes. The hardest thing I ever did was let him go. Loosen his gripping hands from the hospital bed rails, close his eyes, whisper in his ear I loved him, that I kept my promise, that I would see him again one day, crisscross his arms over his chest and lay him to rest before I woke my mom who was asleep beside him on the couch.

When I brushed my fingers across her shoulder and said “Ma”, she knew. I can still remember the screams. My neighbors brought coffee. We notified family to come see him before the coroner came to take him. My husband and his own dad did all the work to get my dad his 21 gun military salute. A precious memory in itself because my husbands dad passed away 10 months later, and my husbands mama a year after that.

There was family who was upset at me. Why didn’t I call 911? Why would I do that. Well, why did my dad put it on me to honor his wishes? Because he knew someone else would have him revived just to have to die again. I not only honored him, but the law. So in all those why’s to me, why would I not gift this man the last thing he asked for?

And yes, I almost did start CPR. I almost did call, I almost let him down.

It’s not for the person we do these things it’s for ourselves. It’s selfish to force someone alive because we can’t bear to lose them.

We took care of my dad at our expense. All the equipment was provided as lenders from Hospice. Food, special food, like ensure (or equivalent), popsicles, toiletries, lotions for his legs, electricity all those extra’s. Paid for it all. Never applied for a caregiver allowance. In his last days, he couldn’t eat, or drink. So I did little things to try to entice him. Licks of popsicles, milkshakes, if even a baby spoon full. His tongue was so raw, he couldn’t really swallow. His bottom was so full of bleeding sores he was embarrassed for me to change his diapers. Mom would do most of that part, so he could keep his dignity. So his daughter wouldn’t have to see private parts. I think he was trying to save mine, too. It usually takes awhile for bed sores to form. For him and the extent of the cancer through out his body it was really awful.

My mom continued to live with us. She wouldn’t get up. All she knew was my dad. They were together since she was 19. I had to go back to work. Bills needed to be paid. I had to let the pursuit of my acting career go. I had just graduated from JRP Talent earlier that year. I was really on my way. Family first. Family remained first, I went back to work at Eppie’s Restaurant in West Sac then to Huey’s Diner which was being built from the ground up. Hired on the spot. That’s where my Restaurant Management career started. First as Head waitress, then as shift supervisor, assistant manager and then General Manager. I made it to GM in less than a year. I was barely 24. I started at Eppie’s when I was 18. I’ve worked at Eppie’s 4 times, and Huey’s twice. Both of them for a time being.

I was finally able to get mom up and about. She would come up to Eppie’s for coffee. I introduced her to new people. All my people. Work and friends. Encouraged her. Did everything I could to remind her she had to live, go on. One of my customer’s offered her a job across the street from where I worked. Later, she started working at the 49’r Truck Stop. That’s where she was when she had a dream of the past. She was able to find her high school sweethearts mom and from there him. They have been together since and married nearly 18 years now. Mom moved to him in Corcoron CA about 20 years ago. After their marriage they started their life in Georgia. Sometimes when I write about dad I mean dad and sometimes when I write about dad, I mean this dad. It all depends on the context of the share.

This visit is the first time our grandson has met his great grandparents. Even though mom is trying to meet up with her other family while in town too, and dads as well, and I am so very glad they are, they still made it a point to be at ‘Tai’s ball game yesterday. He was so excited.

More to come

My Week in Review- July 5, 2015

Posted by twinklev

My week in review- July 5, 2015 – July 11, 2015

4th of July at our son-in-law to be and daughter’s was a nice one despite the fact 2 of us were missing from the evening. Ozra spent it with his girlfriend and our grandson spent it with his dad and family. We didn’t do any firework’s. That’s something we would have only done for De’Mantai. It was always a tradition for the kids. We passed this year. We did though sit out front and watch other’s in the neighborhood do theirs. Not loud at all. Just the little festivities of cone fountains on the ground. The BBQ was amazing. We were home about 4 hours after arriving.

On July 6th, I received a call from my Gastroenterologist that I wasn’t expecting at all. In April I was diagnosed with Diverticulosis in the recto-sigmoid colon and the sigmoid colon by Colonoscopy. At that same time I had a polyp removed. Benign inflammatory hematochezia. So we increased fiber intake. That was my plan. It was in January when the bleeding became a constant. Prior it was often, but not each time. Diarrhea was something I could no longer stop. Several times a day to the point I had to prepare to leave the home unlike before. The call was to start the process for surgery. Endoscopic band ligation.

I had just received the results of an ultrasound that one of the cysts on my right ovary had doubled in size and that I needed to repeat it in 8 weeks. That would be in about 6 weeks from now at this point. I’m not sure though anymore what is causing the most discomfort as so much is overlapping in my belly. I’m not even sure if my July 2013 diagnosis of hepatic hemangioma is still playing a significant role. That pathology was benign hepatic parenchyma with erythematous of the liver. I’ve basically just learned to deal with it. It has bothered me that my daughter was diagnosed with hepatic epithelioid hemangioendothelioma (EHE) which is rare. Mine is more common. Both can be genetic. The only reason mine were found is because of my second Gallbladder surgery, where a portion of Gallbladder had taken on new growth and had become stuck to my liver. When the rest of the gallbladder was removed so was a portion of my liver and some of the lesions as well. I’ve never had any followup since the post op. What do you do when you have too much going on within your body? Especially when they also know you’re also a chronic pain patient? I had never hit a wall before 2013. I never felt the judgement many spoke of. Not until all those trips to the ER during the 4 month wait on the scheduled surgery. Those trips didn’t do me any favors. I’m sure it made it look like I was seeking. Especially when on the last visit I declined another ultrasound do the severe pain, and I declined pain medication. Yet was prescribed a couple of days of Tramadol, I suppose for good measure. I really needed what was wrong fixed. When my surgeon did get inside me, I had been hemorrhaging. His own words to me at my post op “Thank you for making me believe you”. I wanted to cry! But I didn’t! Maybe someone could have believed me before that! Thanking me after the fact. After I made myself look like a fool for seeking help, begging really. Honesty really can backfire. Just because my ability to hide pain is just that, hidden, doesn’t mean it wasn’t there. I’m tough when it comes to the pain scale. When I see people online say they are at a 10, I doubt it. Why? Not because I doubt you’re hurting but because 10 is a number reserved for the worse pain of all. When people say their pain is a 20 or 100. Nope, sorry! Again, I believe you’re hurting, I believe it may be hard, I can’t believe it’s the 10 described. When you’re at a 10, you’re out of your mind, you hurt so bad being online, visiting, doing anything even for pain distraction doesn’t work. It can’t work. 10 means medical intervention. I mean seriously, you think you’re dying body and mind. Even when I did go to the ER, I never told them 10. Most likely 8. Even people who don’t believe are praying to God at a real 10.

No one is going to take us seriously if we tell our doctor, a new referral or an ED physician we’re at a 10. No wonder the pain patient is often doubted. This is when assessment is most important.

Pain behaviors- I’m really good at not showing these. Partly due to the Functional Restoration Program I completed in 2009. Prior to that I was fairly decent already. Why is this so important to me? Because while CRPS alone has me in a non stop state of burning, stabbing, throbbing, piercing, bee stinging sensations and living in my head all day long, I want to appear as a productive member of society when I am out and not be noticed as having any illness, disability or limitation. I’ll do what ever I can to be mindful to not grab at an area, or focus on it. The only behavior I might show from time to time is shifting and I can fake it to make it because other people shift and change positions in their seats, too.

However, when in an emergency situation I’m not sure if I’m failing myself or if those medical professionals are failing me. Pain behavior’s are also indicators. High blood pressure (or too low), sweating, vomiting, complexion, the eyes, skin, breathing, temperature. Hyperventilating. These are objective.

If they don’t believe in us, how can we believe in them.

I told the GI that I needed time because my husband was scheduled for surgery on the 10th. Which he has now had to repair a tear in his shoulder. It’s taken 2 and a half years to get his surgery so there was no way I would interfere with it happening. He’s doing well so far, although it has only been 2 days. Due to his quad bypass in December of 2012 and his history of 2 previous heart attacks before that. They did take special precautions by placing an arterial line to monitor his blood pressure in real-time rather than using the cuff. He was under general anesthesia and given a full block. The block lasted the first 24 hours. He didn’t feel any pain during that time. I’m so glad. He was kept in recovery longer that usual, but we were still home the same day from the outpatient procedure. He was really taken care of by his surgeon, anesthesiologist and after care team.

The first thing I did was call my Pain Management Physician to let them know about an upcoming surgery. I have a pain contract. I’ve been with then since 2004. Work Comp/CRPS. Pre planning in case I need to take pause from care to be treated through my primary. One should not be prescribed by separate physicians especially if it may involve a pain reliever.

My ability to breathe is worsening and I’m not sure if it’s due to internal pressure, my Central Apnea, (I have complex/mixed apnea) or Cheyne-Stokes. Air is like a water faucet that’s been turned down or a drowning feeling. Sleep disorders seem to be getting worse, but I can’t tell if fatigue is contributing. I should be feeling better since my Pulmonary Specialist helped me with a medication about 5 months ago to assist wakefulness. I do get the wakefulness for a couple of hours. All I can think is that there’s so much blood and water loss, dehydration could be contributing. Doc said to keep the fiber high and use OTC to help time spent in the bathroom.

Someone replied to one of my posts the other day “boy, you guys have had a year”. It’s been non stop since the start of our sons freshman year. 2011. Ozra (Kurtis) had a severe brain injury, frontal lobe bleeds, and more. He was in PICU for a week. I stayed the entire 9 days in the hospital with him. My husband had his second heart attack, he was 42. He had his first at 37. December of 2012 I stayed the 10 days at the hospital with him when he had his open heart surgery, quadruple bypasses. 3 of those days, I stayed in the van, storming rain. I couldn’t be with him yet. 2012, I also had my first Gallbladder surgery. 2013, ERCP, second gallbladder and partial liver removal surgery. 2014, SCS battery replacement (phew, easy), all of us numerous appointments, our son’s diagnosis from Shriners Hospitals for Children, our daughter’s diagnosis and extended hospital stays. When my husband came home from his open heart surgery, I was his only caregiver. I had to figure out how to lift him, care for those incisions, his chest, the 4, 2 inch horizontal’s where each tube was placed beneath his diagonal chest incision, the one from his wrist to up (near where blood is drawn) approx 8 inches, the 5-6 inch on his leg. I had to take a class in the hospital. They did teach me how to swing him, and his legs in and out of a position. Get him to his feet. I was exhausted. I thought the flare up was from over exerting. During this same time I was already having belly pain, but I thought it was left over pain from the surgery the year before. It couldn’t be from the Gallbladder. I didn’t have one. 2 months after my husbands surgery he was able to get me to the hospital. Way too funny! Not! I had Cholecystitis and there that story begun. So yep, we’ve had a year! Several.

Eventually I’ll share all those other things I haven’t spoken of in the open at all. I hope that by doing so, someone out there finds hope in believing there is always a way to overcome. I might not prefer my journey, but I’m blessed by it. By every situation, every struggle, every brick wall, every pain and emotion and every mountain I climb, each keeps me doing what I do best.

If you wonder why I share these stories it’s so that you know you aren’t alone going through tough times, struggles, living with physical pain or emotional ups and downs. So you know that families have it hard too. Not just the patient. Caregiver’s don’t have an easy job taking care of their partner’s. Children are affected whether minor or adult. Never knowing if someone’s day will be the better one or the worse one, each and every moment can change without notice, never knowing when a snap will come, or how you should handle it. You can’t baby someone with chronic pain. All you can do is educate yourself on their condition so that you can understand it. Be supportive, but also not allow them to limit themselves beyond actual limitations. Encourage actual limitations that can be overcome. Learned helplessness occurs by waiting on those who are not well and the person will think they can’t do something they can do. After awhile it becomes a part of their illness and disability when it never was and was never meant to be. It’s just something created that evolves. This becomes another problem of its own. Then when you don’t do something for the person they think you aren’t supporting or caring when really the opposite is true.

I know because I’m a chronic pain patient and a caregiver.

I’ve been working on my will. In California it really doesn’t need to be complicated. A handwritten will is a legal document. It can be as in-depth or as simple as needed. The most important factor is that it is legible. That is my challenge since many have a hard time reading my handwriting. Being ambidextrous I favor my right hand for writing it, yet I have a deep left-handed slant. Of course my husband gets everything, but there are a few personal items that I’d like to leave to specific people and places. There is one item I’m having a hard time deciding on. Perhaps it belongs in a history museum or the like. It’s nice to know my copyrights are mine 70 years after my death, but I’m looking into that, too. In addition, those pieces written under pseudonyms, 95 and 120 years after is nice too, but again, options.

Mom was supposed to be here from Georgia on the 10th too, then delayed until today. The trip is hard on them. They should be here by tomorrow if all goes well. I just can’t wait. It would be an awesome surprise if they made it in tonight after all.

Our daughter has her appointment on the 29th for her EHE. Hoping we can get better answers this time, a treatment plan.

Had a really great meeting on the 9th. Apart of an amazing team. Looking forward to continuing to learn, grow and evolve with each of them.

Still working on an exciting project, too. The elements continue to evolve. It’s not my project, I’m just one of the elements. The end result is going to be incredible.

My girls and I – 4th of July 2015

Kharisma on the left

Rikki on the right

Still

#StrongerThanPain

My Week in Review- June 28, 2015 – July 4, 2015

Posted by twinklev

My week in review June 28, 2015 – July 4, 2015

I’ve been excited waiting for my mom to get here from Georgia. I’ve only seen her a few times in the last 18 years. When my son was little and a few years after the injury that led to my CRPS, we got on a Greyhound bus and traveled 2 and half days to Columbus Georgia and then back again 2 weeks later. Kurtis was only 3 when I was first injured, so he learned right away how to be a caregiver. We had a back pack full of snacks and little drinks for the trip so that walking during layover’s wouldn’t be difficult. Some people feel that leashes are cruel, but in fact I was leashed to Kurtis. We were connected to each other by a clip at the waist of our belt loops. We each wore identification around our necks with where we came from and where we were heading to. Mine included medical information. The Lis Franc screw in my right foot had already been removed and I had already done the nearly 9 months of intense physical therapy just to be able to walk again.

Kurtis use to tell me and was the one to tell me when I took my first solo step, “Just one more step mama, just one more step”. The words of a 4 year old. I think he was 5 when we were off to Georgia. “Together, we can” and we did! His quote that’s made it around the web for over 10 years “I fight, you fight, we fight together” was from him to me and me to him as it was he and I together during that time when I couldn’t weight bare at all. My husband worked 10’s so was away 12 hours a day, transportation time included and our girls full time in school.

I saw my mom again in 2008 when our daughter Rikki graduated from boot camp and AIT in the Army. Mom wasn’t far from where our daughter was, so we all met up. It was a great reunion and a super proud day as parents. My girls and I flew out a few years back, but Kharisma and I were only able to stay 3 days. This time my mom, step dad and sister niece are driving here. Will have about 4 days with them. I call Rosie my sister niece because she is my niece, but my parents have raised her since she was a baby. That makes her my sister, too.

Earlier this week one of my children became a coroner’s assistant working for the State. Crime scenes, retrieval of the decreased, and transport. Another of my children took oath to defend the Constitution of the United States and the State of California. For my oldest child we are still working on moving forward with her care. She is still working.

I was finally able to start updating my website. I imagine it will still take me sometime to get it back in order. It is one of the oldest CRPS/RSD sites on the web beneath the RSDSA, the RSDHope and a couple of others. Working on other projects, too.

I had my ultrasound on Monday. My doctor phoned with results late Tuesday morning. Repeat in 7 weeks due to one of the cysts doubling in size. It’s a little under 2 inches now. The ultrasound caused a side effect, by no means her fault, just part of the issue at hand, so I’ve been dealing with that again.

My husband surgery was rescheduled and is now the 10th of July. Ironically, the same day my mom will be here. Hopefully we will be back home from the hospital early that day and all is successful for him. It is outpatient at this point.

And finally we are going to our daughter’s this evening for a little BBQ for the 4th.

Late Night Reflections

Posted by twinklev

Health, healthcare, and the family unit has remained my focus. Change is constant and adapting is necessary. I’ve made some changes to a few of my accounts as my group is getting out of hand with requests, my inbox is out of control, and I can’t keep up with the repairs. I’ve left several groups and will be leaving others. I’m trying to figure out how to do this without offending anyone. I didn’t join these groups. I belonged to over 40 on Facebook. I’ve only joined 4 or 5 since joining in 2009. 20 of the groups, I’ve never even been in. I just learned how to figure that out, who added me, and when. I had no idea. Shows how little I actually know about navigating the Facebook. What brought this all to my attention was being notified asking how I could be in so many and why I haven’t been blocked from Facebook for joining all of them. Um, huh? Most likely because I didn’t join them. This wasn’t the first time I received a message of this sort, the first time was last year. I removed myself from several groups then. Since then, I’ve been re added, and made apart of even more. It is not that I don’t want to be in these groups or support the people who created them. I don’t have time to offer support, participate. It makes it look to some like I’m just there to, I don’t know, be nosy? I don’t like these assumptions especially when I didn’t join and I’m not able to make it into most of them in the first place. I know not everyone thinks this and some have just been friendly invites of mutual interest. I rarely send out friend requests, and will accept a few. The groups I have joined are unrelated to CRPS.

I’m exhausted by people insinuating that if someone isn’t with them then the other person is against them. People don’t have to like what you like, support it, participate or advocate to remain mutual with you. Sometimes it has nothing to do with not supporting something, sometimes it’s simply because people lack ability to take part. You don’t have to prefer what I favor, but I can respect you for thinking differently or believing in something else. I can respect you for not jumping on my advocacy efforts because you have no interest in it, or are without time or energy to take part.

It changes when there is no mutual regard.

Most people feel that respect is earned. I don’t ascribe to that idea. I respect right away. When I meet you, I respect you. From there it can only be lost.

As I write this, I’m slowly moving back into my bedroom. Just came back last night. I’ve been staying elsewhere in the home for quite some time. I imagine it will take me months. The other area has to be cleared away as well. Some items moved to the bedroom and others to different areas.

My mom, dad and sister niece will be here in 3 weeks. Can’t wait to see them. Haven’t seen mom in years. She just had a pacemaker implanted last month. She’s doing well considering the emergency placement from doctor appointment directly to the hospital for surgery. They are driving from Georgia and taking is slow. It’s important for her to see her granddaughter Kharisma since we don’t know the future of our daughter’s hepatic epithelioid hemangioendothelioma diagnosis. Excited for the time we will have together.

My husband was supposed to have surgery yesterday, yet was postponed. We were told it would be this upcoming week, but no word yet on rescheduling.

I have an ultrasound scheduled for the 29th. That appointment was scheduled 10 days after the surgery my man would have had on the 19th. The ultrasound is for a possible procedure pending results. Not sure as of yet if I will be able to keep that appointment. Doing what I can to get these symptoms.

Our grandson was promoted to the 4th grade. He’s growing up too fast. Our daughter Rikki is doing well.

And finally, our son left home about 2 weeks ago. Exploring life and working on his goals for the future. I know he can be whatever he sets his mind to. He already is!

Daughter, son, daughter, and grandson. (Rikki, Ozra, Kharisma and De’Mantai)

“A tiny change today brings a dramatically different tomorrow.”
~ Richard Bach, One

Back From Leave- Update

Posted by twinklev

Came back from leave about a week ago. Trying to get back to my volunteer related activities and other endeavors. I don’t know how often I will be on and won’t be available for all things. Living with Narcolepsy on top CRPS and the rest isn’t easy either and I don’t take medication to wake me up, so I do the best I can with that. It’s extremely hard to have so much going on and it seem so unreal to outsiders looking in, listening, reading my posts. I wake up at times and it’s takes me a few minutes to realize it’s not a bad dream, but soon enough I know it’s the ongoing reality. As some of you know, I’ve been sharing some of my daughter Kharisma’s story under blog posts “Taking a Break” and a little on FB. I just haven’t yet given any specifics. When she seen the Specialist yesterday, we were left confused. He stated he believed the hospital assumed the previous diagnosis due to the size and placement of the lesions on her liver, especially the largest which is resting at the side of the liver wall. He seems like a good doctor. I’m glad he’s reviewing instead of jumping right into invasive pokes. I will go ahead and reveal the first believed to be diagnosis now as he thinks it may be another type of cancer instead. The first was Epithelioid Hemangioendothelioma. I had a hard time with it.

For more information,

Towards a Proper Diagnosis and Understanding of the Pathogenesis of Epithelioid Hemangioendothelioma

Now he is reviewing her Biopsies, MRI, CT, Blood tests, X-ray’s and all records before ordering the repeat Biopsies. Now he thinks she may have Colon Cancer. What, how? I research everything I can get my hands on. While people can have Colon Cancer and not even know it and even perhaps have no symptoms, she doesn’t have any symptoms of Colon issues. Only the pain. Pain I know because of my own liver issues and removal of lesions with my second Gall Bladder surgery just 15 months ago. We’re still left without definite answers so treatment is still in the future. Many more appointments. She’s 26, our oldest and the mother of our 8 year old Grandson.

2 days after the injury to my right hand our 17 years old son Kurtis finally had his appointment at Shriners Children Hospital in Sacramento. We learned that his Degenerative Disk Disease was not the results of his brain injuries when he was 15 and diagnosed with DDD at 15, but instead Congenital Defects of the Spine. He was born with Spinal Stenosis and Spondylosis. We’ve known for 2 years that his 2 of his disks have thinned greatly and now we know they’ve (L2 and L4) deteriorated further with Neuropathy and that he also has a tear at S1. Yep, my heart broke again. He’s a 4th year Sheriffs Volunteer. Many awards. Even from Senator Steinberg and the California Legislature.

All I could do what tell him/post to him –

“Kurtis, You never knew you were born with it,

Go on like you still don’t. ~Mama”

I was born with Arthritis, too. I went on through life as if it wasn’t apart of me. I’m not saying it didn’t hurt, but the more you dwell on pain, aches, what you can do, might do, or have to rest from the more you give up on life.

I didn’t. I still played 8 years of softball and made sure that when I began working it was on my feet. Moving. All Kurtis needs to do right now is protect his back and spine by moving it or losing it. There are no options for surgery at this time and he will not be placed on any pain medication. He is strong and he has goals for the future.

Kharisma, while going through all this has been promoted at work and is seeming doing well. It’s always ‘seemingly” isn’t it?. We are fighters! We just hide most of it that’s how we go on. Emotions.

And then there’s Erykah, our daughter who is getting ready for her and her other half to move into their first home next week. A beautiful home. How can I not feel bad for her, I know she’s pained too, getting lost in all the medical health chaos of her family. She was our Army girl.

The human body when it reaches a certain point in pain will pass out, shut down, the human psyche will either hold on, break, come back, attempt, or kill itself. It’s emotions that take control of the mind. It really hurts to hurt. None of the above includes my husband, or myself. Not really. Not any of his medical appointments, PT, etc. And me, I’ve put mine on hold, I had to, my 5 lights will always come first.

So here we are the ride isn’t over, there’s still another story I haven’t shared yet, not in its entirety. When I do, I want it to help others. It may be later down the line.

That injury I sustained was without a single pain pill. I’m not saying it didn’t hurt or it isn’t hurting, I’m just saying (for me) I didn’t have to go there. #StrongerThanPain I still haven’t and on the 15th it will be a month. Vitamin C, Ibuprofen, deep breathing, meditation, focal points and going to my happy place in my mind where there is no emotional pain. Where there are no mis diagnosis’, and delayed help. Those lesions were found on my daughters liver 16 months ago, but she was dismissed due to no insurance (assumed). Or maybe just because it didn’t seem important enough at the time. My happy place where we’re all camping at Rumsey in Yolo County. Our spot for several years.

Change the direction of your mindset and you change the direction of your pain. ~T

Nobody Said It Was Easy..

Posted by twinklev

Sometimes people only see what they want to see, hear what they want to hear, but do they really “hear” , “see” it”? It’s all perception! We live in a world of perception and deception especially online. The typed word is “perceived as “tone of type”. People take from it what they will. Imagination goes with it, fantasy, an idea of who or what you are. Tone of Type means how the other person takes your post, how they imagine it as if it came from your lips. It may not be what it is intended to be though after all there really is no tone, there is no voice, there is no body language.. it’s all the typed word. No seen or heard emotion. Nothing to actually base the tone on. I’ve shared so much through Social Media over the years, but I assure you, even with those who I thought were “friends”, I’ve never shared everything.

Since December of 2012 my life, our lives have changed drastically, but let me be fair in saying that just because I haven’t shared like I used to that it hasn’t continued.

(I know some of you know)

Due to betrayal, I haven’t revealed what I might have. I’ve shared pieces and parts. At the end of 2013 I learned a valuable lesson. One that carries with me. I already had reservations and a trust issues.. that person only reminded me that barriers and walls are meant to be kept up.

My husband had already had 2 heart attacks, he had 2 stents in his heart since he was 37 when the first occurred. The second occurred in 2011 if my memory is serving me correctly. Not many months after that our son, who was a freshman at the time sustained several brain injuries that still exist today, so while I praise all of his efforts and good deeds online, we are still working to relieve him of symptoms, like breathing, smelling and other issues. I will not be ashamed to say that he was diagnosed with ADHD and was on Adderall for it for some time. By choice, partly his choice, we decided to go off the Adderall over a year ago and let his body take it’s course. He’s strong! He’s young! My Lil ‘ OZ! My husband had a quad bypass 17 months ago and is still dealing with Diabetes, Neuropathy, and the aftermath. He takes 11 medications upon waking, 4 in the afternoon, 11 at bedtime. I could care less about me anymore, even though it’s hard. Yep, hard! He took care of the me, I couldn’t keep up on so much, now I have to pull for all of it and I …

Will!

Some people think because I have hope in my heart, once every 3 months or so that I’m able to go out that I think my shit don’t stink, that I’m better than someone else…

I’m not! Nor would I ever think it. Seriously? ! I’ll be the play’a in my own game!

A pretty outfit, a little make-up, one leg leaning to the hard left while the other holds it up, wheelchair in the van, the stick out of view, but no one knows..

Invisible diseases are even invisible among the very people they should be acknowledged from.

Even those in remission are looked down upon, I mean you can’t have a bad day, you’re in remission, right? Wrong! Remission only means an absence of symptoms for a time being it doesn’t mean that no symptoms will present.

A time being can be minutes, hours, days, weeks.. there is no absolute!

Those people still hurt too, still feel fatigue and get sore, wear down more quickly than someone without an illness.

I’m not in remission! I just understand those who are.

Now have a CRPS patient taking care of another ill disabled person… add struggles, surgeries, life, precious children, the grand baby. This has been my life. As my son approaches another surgery next week…

When you think you’ve had enough and you can’t go on…. Go On!

Don’t ask me how I do it..

Auto pilot!

Don’t ask me how I feed the dogs, the cat, love my children, my grandson, my family, however distant…

Or how I take care of my grandson…

Don’t ask me about me..

Don’t even ask me how I lift my eyes..

Just know that I do..

~ #TVa

#StrongerThanPain

(But he leaned in and whispered it might be worth it)

I originally wrote this weeks ago and used the same title recently on FB to show how proud I am of my (our) grandson De’Mantai Xayvier Howard who made 8 consecutive honor rolls and graduated at the top of his second grade class (and the entire school) . … (this post was written before that and left in drafts)