Family and Blessings

Posted by twinklev

My mom and dad arrived in Sacramento June 28th and headed to Southern California on July 1st. Today I’ll see them once more before they leave back to Quincy and then drive back to Georgia.

They came so that my dad could see his brother and make funeral arrangements for him due to inoperable end stage cancer. My dad also has cancer and my mom has a pacemaker keeping her heart beating.

They took my sister and her friend to Disneyland this last week as she had never been there before. My little sister was born my niece, but my parents have raised her since she was a baby and so I acknowledge her as my sister instead.

thankful- grateful- blessed

This visit was the first time in all my 16 years that I was able to be with them without taking naps, or laying down. Without being overwhelmed by pain or in a mindset of pain. I even swam a few laps for the first time in all those years. My arms and legs did fairly well, my lower spine ended up flaring a little afterward and that might be because of the prior week and having started more aggressive movements and stretches for my back in my little pool.

I might not be able to do the things I still have wishes for, but I know that everything I’m doing is keeping my blood flowing better throughout my extremities, and I know that each stretch is keeping my flesh circulating with less tissue restriction and edema and therefore keeping pain from reaching an uncontrollable point.

For certain my orthotics also make an incredible difference because when I don’t wear them my entire physical alignment is disturbed and I end up leaning forward just to be up after standing. Having flat feet never did me any justice.

My family will be arriving back in Sacramento in a couple of hours and then I’ll be spending the remainder of the day with them before saying G’bye for now this evening.

Heading out to my kiddie pool to get an hour in before meeting them.

Love ‘n light.

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

NERVEmber (November) is National RSD/CRPS Awareness Month!

Posted by twinklev

November is our nationwide Reflex Sympathetic Dystrophy (RSD), Complex Regional Pain Syndrome (CRPS) Awareness Month!

The Power of Pain Foundation calls this Nervember. There’s 2 meaning’s behind it and I hope that I’m explaining it properly. Nerve of course would be for nerves, and the nerve pain and/or damage we experience and ember, coals, fire, what our pain feels like. Barby Ingle Executive Director of the POPF explains during her hour long interview on the Living with HOPE Radio show Monday October 29th, 2012.

You should be able to find that episode here: Living with HOPE with Guest Barby Ingle http://www.blogtalkradio.com/thebodymindandspiritnetwork/2012/10/29/living-with-hope

The episode is still availabe in the archives to either be listened to from Blog Talk Radio or by download. Barby also discusses several upcoming events for Nervember. Including a full day 6th Annual Arizona State Management Conference Webinar November 3rd, 2012.

For a really great blog, don’t forget to visit: Patient Awareness by the Power of Pain Foundation at www.PatientAwareness.org featuring writer and editor Chris Greulich. Still in it’s infancy, born only a few months back, you won’t want to miss this one. It’s growing by leaps and bounds. So much more pain and patient related information to come.

I can’t wait!

Patience Grasshopper…

Please support a loved one, friend, colleage, or even an acquaintance that you know who may be suffering from and attempting to survive this painful and debilitating neuro inflammatory auto immune disease. Even those you don’t know need your support.

We ask that you wear Orange as many times as possible throughout the month of November. Whether it be an awareness bracelet, clothing, anything. If you don’t have anything on hand, you can get into the spirit with us by making yourself an orange tag that say’s “I Support RSD/CRPS Awareness” or “I Hope for a Cure for RSD/CRPS”. Use your imagination, we’ll be thankful to you!

1000’s are getting together on November 5th, scattered throughout the world to wear orange in support of RSD/CRPS awareness day. The link to Rebecca Hale’s page is- https://www.facebook.com/events/251987344922784/

Don’t forget to tell everyone that you know to wear orange too and why. The more people you teach and who become educated in why we’re doing it can pass on what they’ve learned to the next person while wearing their orange and that person to the next..

and that person to the next..

If we all take part soon enough more and more people out there will become familiar with the words.. the letters..

R S D C R P S

Then we can rest easy and begin again.

What are you doing to this month in the name of RSD/CRPS awareness? Would love to hear from you!

Kwan Yin Healing with Tim Emerson

Posted by twinklev

Tim Emerson will be Guest Speaker on the Living with Hope Radio Show http://www.blogtalkradio.com/thebodymindandspiritnetwork with Host Trudy Thomas Monday May 21, 7 EST (4 Pacific Time)

Tim is a member of our Group at:

https://www.facebook.com/groups/RSDCRPSAdvisory.InfoSupport/

Tim Emerson started working with energy healing in the early 80s and quickly found himself surrounded by spiritual friends and partners. He met medium June Burke through friends and had a reading with the seraph Julian. He travelled to meet and work with NYC psychic healer Elizabeth Stratton. He learned yoga, studied T’ai Chi with master T.T. Liang, taught at the Delphi Healing Arts Center, and studied the power of sound healing.

But it was the work of L.A. chiropractor Eric Pearl that really brought light work home for Tim. In 1993, Dr. Pearl’s patients started reporting that they had felt his hands, even though he hadn’t touched them, and shared that they saw other people in the room who weren’t physically there. His patients soon reported receiving miraculous healings from cancers, AIDS-related diseases, epilepsy, chronic fatigue syndrome, rheumatoid and osteoarthritis, birth disfigurements, cerebral palsy and other serious afflictions. And then he realized this could be taught. His story is told in his book, published in 36 languages, “The Reconnection: Heal Yourself, Heal Others.”

A spiritual friend’s experience of overwhelming positive good feeling got Tim interested in trying “The Reconnection.” When he did, he felt intense energy, and then a gentle but firm hand on his stomach, steadying him. There was a golden cord going through his body to his spine. A large hand wrapped around the base of his spine, and another grasped the cord, and the hands pulled down on his spine and up on the cord, hard, very hard, while the hand steadying him held him down. He felt a flood of good feeling, and the pain in his back from degenerative disc disease was gone. A few months later, at an annual physical, his doctor confirmed by reflex test what had seemed impossible—no signs of degenerative disc disease.

A few months later, Tim went through Level I/II training (Reconnective Healing) and Level III training (The Reconnection), and started doing local sessions. The results were immediate and surprising. His clients were relieved of asthma, months long abdominal pain, severe muscle fatigue, migraines, and even recovered from head trauma doctors expected would never heal. Like Dr. Pearl’s patients, Tim’s clients sometimes shared spiritual experiences from their sessions, from feeling like they had been touched to seeing others who weren’t physically present. They also shared emotional healings, from feeling inundated with positive thoughts to working their way through painful experiences with divorce and childhood abuse to finding their PTSD had calmed. Clients also asked for help getting through quitting addictions and in raising the positive vibration in a room or home needing healing.

In The Reconnection, which is more about life path than healing per se, clients found a new confidence, while those in poor situations found those situations abruptly ending and new, better ones emerging. With these experiences behind him, Tim moved from working informally to starting Kwan Yin Healing — http://kwanyinhealing.com — to bring these services to a wider range of people who otherwise would not be aware solutions exist to their physical, emotional, and even spiritual challenges.

Tim also brings his professional experience in business, writing, teaching and music to this endeavor.

His forthcoming book, “Getting Unstuck,” discusses how people often feel trapped in their circumstances—and that’s not necessarily true. Whether at the mercy of the economy, or jobs they feel they can’t leave, or creative pursuits they’re rather follow, practical solutions exist. Why isn’t the Law of Attraction working? How can we understand this in practical, not mystical terms? Trapped in addiction? Tim shares my own experience and ways out. Trouble grasping a spiritual path? Tim shares his journey and offers practical tools. Why aren’t relationships working? There are some insights here too. In short, how do we heal our lives so they are the happy, joyous, and free celebrations they are meant to be? It’s easier than we think. In fact, it’s our natural state. The book will be available probably late this year.

Tim’s first Teleseminar Workshop, “Job Creation,” starting June 15, is a six-week seminar covering a host of issues, misconceptions, and effective approaches to creating work, whether finding a job, changing jobs, or creating new jobs and income opportunities. The workshop starts with understanding the business world, resumes and cover letters that get read, interviews that get jobs, and proceeds to finding the work that fits who we really are, work that fills true needs, and that uses the unique skill sets we each have. The workshop also discuss networking to find the “hidden” opportunities along with low budget ways to promote a new enterprise. Tim draws on his years as a business manager, consultant, columnist and professor to bring practical solutions to these common but solvable problems.

Tim lives out in the country in central New York State, where his dog and two cats enjoy three and a half acres of forest land he planted himself. He also planted extensive fruit and nut trees, vineyards, berries, and vegetable gardens. This summer he’s building a passive solar/partially earth-sheltered home that will have near zero energy costs, as well as taking advantage of the beautiful views and outdoor lighting. He continues to teach professional writing and music, and he plans more books and workshops in the future.