My Week in Review- July 5, 2015

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.

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My girls and I – 4th of July 2015

Kharisma on the left

Rikki on the right

Still

#StrongerThanPain

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Power of Pain Foundation Co Sponsor Assembly Bill 623

california-sacramento-state-capitol-1Yesterday the Power of Pain Foundation Co-Sponsored AB 623 with Assembly Member Wood at the California State Capital in Sacramento where the bill was officially introduced.  I spoke on behalf of both pain patients and opioid abuse. In attendance with me and on behalf of POPF and the bill was Erik VanFleet, Kharisma VanFleet, Debbie Ellis, and Brandy Ellis.

Speaking at the event was: Assemblymember Wood (author), Assemblymember Levine, Mendocino County Sheriff Tom Allman,  Ralph A. Cansimbe, Chapter Commander PFC Alejandro R. Ruiz Chapter, American G.I. Forum, Representatives from bill sponsors US Pain Foundation, Power of Pain and American Chronic Pain Foundations and the CA Academy of Physician Assistants.

Legislation to Curb Prescription Drug Deaths UnveiledAB623_March242015_POPFCoSponsorWithAssemblymanWood

Published on Mar 26, 2015

(Sacramento) – California legislators, public health representatives and law enforcement officials announced new legislation at a State Capitol news conference to curb prescription drug abuse and deaths. Assembly Bill 623, authored by Assemblyman Jim Wood (D-Healdsburg), aims to reduce prescription drug abuse-related deaths by reducing their access to those most prone to abusing them. More than 60 people die every day in the United States from prescription drug overdoses. Approximately 6.5 million people in the US abused prescription drugs in 2013, more than double those that abused heroin, cocaine and hallucinogens combined. “Narcotic pain medications, or opioids, have an important role in our health care system,” said Assemblymember Wood, who is a licensed dentist. “They provide effective relief for the millions of Americans who suffer from chronic pain. But too easily they are getting into the wrong hands.” Here’s more in this Assembly Access video.http://www.asmdc.org/wood

Watch the Press Conference on Assembly Live

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My speech-

Hello, My name is T. VanFleet, I am the Advocacy Director and Executive Board Member of the Power of Pain Foundation. I am also a pain patient myself. Through painful trial and error, my physicians and I have finally found the appropriate combination of medications to provide some relief from my debilitating symptoms. The prescription medications that I take allow me to do things that most people take for granted. Now, I celebrate small triumphs such as cooking, occasionally attending a function, and watching my grandson grow. One of the medications that helped give me my life back is a prescription opioid. A type of medication which has recently come under increased scrutiny due to heavy abuse by some.

Unfortunately, people who use prescription medications as intended can become unfortunate casualties of efforts to regulate opioid abuse, as we end up getting lumped in with those who misuse treatments. It is difficult to obtain refills,, denials and delays by pharmacists and insurance, including workers compensation leave patients in withdrawal and un-manageable circumstances including suicidal ideation.

Fortunately, there are new weapons available to help combat prescription opioid abuse which do not sacrifice the many patients who legitimately use the medications to fight pain. New “abuse deterrent formulations” (ADF) for opioids have properties that make it difficult or undesirable for someone to tamper with them. These medications are made with physical and chemical barriers, such as a special kind of coating or hardness to the pill itself, that won’t allow them to be chewed, crushed, cut, grated, ground up, or melted with water or alcohol.

The Power of Pain Foundation strongly believes that California policymakers must enact policies such as AB 623 to help develop a strong, lasting solution to the health crisis of prescription opioid abuse. We must find a balance that separates patients who truly need opioid medication to live productive lives and those who are abusing them. Responsible patients should not be punished in an attempt to crack down on prescription drug mis-use and abuse. Legislators, health care professionals and pharmaceutical companies must work together to stop opioid abuse while keeping the needs of chronic pain patients front-of-mind.

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I was honored to support this bill with Assemblyman Wood on behalf of the Power of Pain Foundation. It’s important that we assist in the prescription opioid drug abuse problem. This will help responsible pain patients get access to the care they need. Too many are denied now because of the stigma attached to their chronic pain identity. Abuse deterrent formulation’s will assist both issues.

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Press Release Article Tuesday, March 24, 2015

Legislation to Curb Prescription Drug Deaths Unveiled by Assemblyman Jim Wood

For more information on the Power of Pain Foundation’s Policy Efforts, please visit-

Power of Pain Foundation | Policy Efforts | PatientAwareness.org

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-Friday March 20, 2014 Episode of

The Burning for a Cure show

With Hosts POPF President, Barby Ingle and POPF Executive Board Member & Marketing Director and Promotions Chairman – Joeygiggles and Co-Hosts Executive Board Member and Advocacy Chairwoman Twinkle VanFleet with Power of Pain Foundation Executive Director Ken Taylor.

Discussion: Legislation- Abuse Deterrent Formulation (ADF), more  Listen Here

Out in the real world, I try not to identify as a pain patient. We will be judged. You know it, and I know it. It becomes our label. As I attempt to go forward in advocacy it can sometimes be a little awkward. Not in my physical appearance, but In my inability to speak properly, delays, memory, forgetfulness, stuttering, wake-sleep, sleep-wake. I’m heading into my 15th year with CRPS type 2. My Neurocognitive deficit seemed a rapid decline. It’s part of the story that helps me fight to go on, for my family, for you.

You have to hang on to you! It’s okay to not be perfect. It’s okay to not be your “yesterday”.

The struggle is real. We are who we’ve become.  And it really is okay in all that it is. We might not like it, but we have to learn to accept it.

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Perfection is all that you can achieve in the here and the now. Getting that shower, getting dressed, combing our hair. Those are the triumphs.

There’s so much worth in the smallest things.

I believe in you! Believe in you, too.

Thank you Barby Ingle for always believing in me and my ability even when I didn’t.

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Lets try to remember to not pre-judge a chronic pain patient on appearance or preconceived notions, but instead, assess on diagnosis, and credibility. ~Twinkle V.