CRPS, Loss of Care, MLT Memories

Posted by twinklev

A memory came up in my Facebook today that both made me smile and recall all the amazing moments I had after the treatments. MLT is Manual Ligament Therapy and was performed by its creator Arik Gohl. I attended a 5 day healing retreat in October of 2016. 8 months after losing access to CRPS and Spinal Cord Stimulation pain management care. I had a second set of treatments in late December of 2016 and into the beginning of 2017. I went to Tennessee for 2 weeks. While there I also learned some of the MLT techniques which gave me knowledge of the unique therapy and its process.

I was treated for CRPS and Spinal issues. Degenerative Disc Disease, Degenerative Joint Disease, Stenosis, Thoracic Outlet Syndrome, Radiculopathy. Neck, arms, legs, feet, and spine. All of me. I felt like it relieved my Levoscoliosis too. Some say scoliosis doesn’t hurt. It does! We never get treatment for comorbidities in regular health care. The focus is always just one at a time, if there’s any focus at all. Often times care is advertised as treating the “whole person”. I’ve never had a physician treat all of me. And with WC, it’s not even allowed. You’re not even allowed to talk about anything other because each carrier isn’t responsible for the other. Okay, fine! Understood! But shouldn’t each physician at least know your history? It causes errors with our full bodies.

I’ve undergone traditional Physical Therapy many times since the injury that caused CRPS type 2. The longest was nearly 9 months straight 3 times a week after the period of non weigh bearing/ and the surgery to place the lis franc screw to attempt to repair the fracture and dislocation of my right foot. Another surgery to remove it. This year was 2001.

The repeat of this is for the new readers to the this blog and I imagine I’ll repeat in future blogs.

MLT isn’t traditional western physical therapy. Often times these therapies are the same for each patient. MLT is specifically tailored for individual injuries, illnesses, syndromes and conditions and targets pain relief for the specific individual. It was a gentle technique that restored blood flow, reduced edema, minimized discoloration and so much more.

I had my first suicidal hospitalization just a week before being dismissed from my PMD of 12 years. I was fired for being in distress. There’s no other explanation. The physicians assistant was annoyed prior to ever seeing me that day and which had nothing to do with me and her bad day until she stepped into the office. For one she was upset that Medtronic was there and that took space in her schedule. Those appointments have always been scheduled the same way and for 10 consecutive years.

She was also highly upset at me for telling her what happened and how I tried to reach out to them to no avail prior to the suicide attempt. My dismissal letter didn’t say I did anything wrong at all. I had always been in excellent standing and compliance with them. My physician gave me a lumbar sympathetic nerve block just 2 weeks before that. Odd right? The letter stated “patient-physician breakdown.” She wasn’t my physician, she was his PA and he was on vacation at that time. He was also in the process of selling his practice which became final soon after.

Who knows why it all rolled that way.

My second suicidal incident was less that 2 months after that. I was already having a horribly hard time with pain. My appointment that day was the block followup appointment and to have my SCS checked by my Medtronic rep. I never even got to the point of being able to get an xray to check if my leads migrated. Only the check of the battery at the time which seemed to be working. My rep as always was kind. Today there should be 3 years left on the battery yet it hasn’t worked at all in approximately 18 months.

My attorney of 19 years has been no help at all. I’ve met this man in person just a handful of times. My son took me to him in 2018. I was still trying to re establish care. It is Worker’s Comp. I had retained lifetime medical on my foot, which included my SCS. They just wont approve me care. Nor will the lawyer appeal the denial for me.

When my son and I were there he once again referred to my injury as a sprain. It seems each time I see or speak with him he refers back to the original ER report. Soft tissue damage, sprain/strain. That is true. On the day of the injury that’s what my diagnosis was. It was incorrect though. A misdiagnosis at the time. It was a major fracture with torn tendons from the bones. Yet he’s adamant to refer to it as a sprain, still. That makes me look like I’m trying to get care for something mild, old and done with. This has never been done with.

It was relieved though by MLT and I believe with all my heart I could have maintained that relief and progress if I could have gotten care.

We had asked him to either help with care or move forward with cashing out my claim. That way I could pay for my own treatments. He hasn’t done that either.

The memory that came up in my Facebook today was a live video. Because of MLT I was able to skate with my grandson, 11 years old at the time, for the first and only time in his life. He held my hand the entire time. I did fall seconds after getting on the floor. My legs and feet were strong enough for the carpet but not to actually skate. Best of memories, no matter.

Also in that year 2017 and into a little 2018, I attended Church in person, attended my nieces baby shower, a Project Ride event, 2 days of California Advocacy Day at the Capital with the California Chronic Care Coalition and the National Patient Advocacy Foundation. I attended NAMI Walks in 2018 though I didn’t walk. I was able to be there for my 103 year old grandma as she lived her last days and with family as we raised money doing car washes to pay for her final expenses.

These are major blessings, even miracles, I would have never gotten, otherwise. It was definitely a remission from what I had been enduring all those years prior. A remission that western medicine could never offer.

That did entirely end in 2018 as well.

Today I’m still receiving some residual blessings from MLT. At least I’m alive. While I did have another suicidal hospitalization days after returning from Tennessee, I’ve not had any since.

Why, some may wonder, would that happen after relief. I had no other support, I sought follow up help, I was getting messages from people on social media thinking I left my volunteer position for other organizations, pressure. I left because I was in bad shape, and trying so very hard not to be. To be clear that’s not the reason it happened but it sure as hell didn’t help the pile on. Mainly, I had no idea how. How I’d be able to go on. How I’d be able to maintain myself with it all. How.

I both have and haven’t.

I didn’t just go through the cold turkey withdrawal from the various medications I had been taking, pain rose considerably. Cymbalta was the worse.

Now a days, I’m just trying to live all over again. New. It’s limited, no relief to wake up, or end my day, nothing in between other than the natural remedies I’ve learned along the way. They each contain benefit but not enough to take a major edge off a flare or even calm nerve pain damage.

Magnesium, Valerian Root, Ashwagandha for depression and anxiety. Kratom, as needed for pain, Matcha for a boost. Oil of Oregano, Vitamin C, Vitamin D, Turmeric/Curcumin, Ginger and Potassium. These are what I use most. There are others dependent on the ailment. I’ll share more about each of these in the coming months.

I’ll continue to tell the above stories as its relevant , but at least I have little emotion over it now. It doesn’t hurt me to tell it.

Today’s goal is to get in my kiddie pool for some water PT. I attempted that yesterday and got no farther than trying to fill it.

Try, try again.

Happy Friday!

Making New Memories

Posted by twinklev

I went swimming with my family yesterday. When my Grandson arrived at the Hotel I swam a lap with him. It was the first time I had ever actually swam with ‘Tai. I’ve spent hours in little pools with him over the years, but swimming wasn’t included.

Pool side conversations of past, present and future were plentiful. My mom told me of a conversation my sister had with someone, a statement regarding who would love her and care for her if my mom and dad passed from this life. My mom told her that I would. And I will. My parents are a year from their 70’s. Rosie is 15.

I told my grandson that I would be over soon to spend the day with him. I miss being with him. I need to go see my sons new place too.

What I need to do first though is see my mom again later this afternoon or evening as they’re staying another night in order to spend time with my step brother today. They’re at Church right now. They do that even when they’re away from home.

I’ve always said a prayer over food, even if it’s a silent one. My mom always says one for everyone at a table whether those people pray or not because she doesn’t want the devil sitting down to eat with her. It’s both hilarious (I mean no disrespect) and quite serious because now I can’t eat because of that most scary image implanted in my mind. I must pray differently now before taking a bite. lol Truth.

I wish you all a beautiful day.

Image Credit by Ozra

Thanksgiving – Being Thankful

Posted by twinklev

Image Credit by Ozra

I’m thankful that my mom was able to make it here from Georgia over the summer. I’m thankful for our time together. I miss her. I’m thankful for my husband, our 2 daughters, our son and our grandson. I’m thankful for the food we prepared and all ate together.

I’m thankful for family and friendships and the friendships that are family. I’m thankful for people who try when trying is hard enough to achieve. I’m thankful for the acquaintances. I’m thankful for all our differences because if we were all the same there would be nothing to learn from. I’m thankful for both joy and pain.

I’m thankful for the Council and the Enlightened because we understand the meaning of humanity beyond the scope of the physical world. I’m thankful for the experiences in all that they’ve been, and I’m thankful for the memories that accumulate in time.

I’m thankful for today, tomorrow and yesterday,

Because it’s all right now.

Forever.

I’m thankful for the love…

… And the light.

I’m Thankful, Thanksgiving 2015

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- 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.