Hope – Love is action. Action is hope. Hope is life. Don’t give up.

manzanita garden pilot hill b&w“There is no treatment.”

“Five to ten years…”

“I’m sorry.”

The neurologist showed us the results of PET scan – it was dramatic. My beautiful exceptional brain had dark spots where there was supposed to be white. I already painstakingly researched the results within scientific literature. I knew what he was going say, but part of me; the part of me that knew something was seriously wrong for so many years expected him to dismiss the results. He confirmed my research. First I was perversely relieved when the Progressive Non Fluent Aphasia was confirmed because it was validation of my experience. I am in the seventh year of showing marked symptoms.

Then he said those words gently. He didn’t say there was a small chance of treatment, of hope. He said there is no treatment, no hope. Five to ten years prognosis and I am in seventh year, and the damage is increasing exponentially.

My ancestors' church

My ancestors’ church

I don’t fear death. I know for certain that is not the end. I fear losing life. Life is exquisite, the world is exquisite, people are exquisite.

My body went in shock. On the cellular level it began shutting down. Hope was burned, disintegrated. It is interesting about hope – I take it for granted, we all do. When hope is extinguished, we feel the finality. That is novel feeling. I felt that about my Uncle Bob’s death, I felt that when I lost a baby, I felt that about my stepfather’s death. Now I felt that about myself.

The rational side took over briefly preparing for the inevitable. We made a bucket list. I made a list in my head: go through my stuff and decide what to keep, who it was going to; the memorial service; and decide what to do with my body; when to tell my family and my kids. Then I sunk into a major depression. A good FB friend died from Lyme Disease and Bulbar ALS. She went so quickly. I was emotionally frozen, I had no motivation do anything, I was isolated. That made me beat myself; I felt like I was slipping into oblivion without doing my part for my family. And I stopped all treatment; medication, supplements, alternative treatment.

black spire2I felt alone. Nobody was protesting that diagnosis, nobody was investigating further treatment and research. My LLND forgot to put in the orders to resume IV ABX before he left on his holiday trip. “Don’t give up.” The male voice haunted me and said that over and over again with firmness. I felt defeated, I was too sick to do it alone. My friends on social media saved my life, and in return that gave purpose to my life to return that favor. But my friends, even though their input was greatly important; they couldn’t do the walking for me.

My husband and my family unconditionally loves me, that I am blessed. I wish I could clone myself, I am only one in the family to research and fight the medical system. My mind and my spirit works that way. My family is too busy in their lives, as they should be, to take up my cause on the ground and start running with it.

At first we thought the cause was Lyme Disease and co-infections. They certainly do play a part on what is happening in my brain. Lyme Disease and co-infections may be the catalyst for PNFA, but it may not be. I have a series of concussions over my life. It maybe the result of a virus.  It may be exposure to toxins. After two years of intense IV treatment, no improvement in speech, in fact is it getting worse. And other signs that I am losing this battle. My LLND agrees.

axesIt so strange – when my body doesn’t work, it so silent without pain. It just doesn’t work. We saw the dire effects on my upper body through barium swallow test. My upper body is fatigued and weak. My trachea doesn’t close, that means I at risk for aspiration. I can’t cough properly, and I can’t clear my throat, I can’t inhale deeply. My gag reflux is diminished, that means I swallow food mid chew. I choke constantly even on saliva. I wear a medical device so when I am alone if I choke seriously I can push the button. Several years back, I choked on saliva, fortunately I had a friend that knew what to do because I was blacking out. I know if that it happens again I can’t dial 911 – I don’t have time.

I have hyper reflex. My body sometimes jerks, and I have fasciculations. My body temp is low – average 95.6. My blood pressure is low – average 88/55. My face is numb, it spreading to my nose and forehead. When I think deeply my brain gets fatigued. It is a strange feeling. I was highly educated – my mastery of my knowledge is slipping away. Time – my time perception is diminished. I can’t hold onto ‘now’ is relating to the past and the present. I forget what day is it. I have remind myself all day long if it is Monday or Tuesday, what date is. I can still think deeply and focus for a short bit, and then I freeze. I am trying to grasp the concept and the context – it is frustrating. My spirit wants things in order, but my body doesn’t have the strength to do that. All I can hope for is enough energy to dress myself, and feed myself when I am alone. Phone calls are out of the question. I am sometimes push through – when I do that I feel like I am on the brink of collapsing.

delilah bedroom nj3I was contemplating self deliverance. I didn’t want to be a burden on my family. I didn’t want to be shell with my soul tied to this failing body and mind. On the other hand, I just let nature takes it course, it will give my children time to process my passing. I didn’t know which option was better. I still don’t. I can’t conceive deliberating leaving my family and my dogs. Maybe I have no choice. If death is in cards sooner than later it maybe silent. Silently my body it shutting down on me.

OLYMPUS DIGITAL CAMERAHope is the supremest gift. Last week I visited Dr Linda Agresti, DO – she is my Athena. She is my GP, and I was there to inform her on the latest findings. She gave my renewed hope. She said that I need to seek Ivy Tower research studies. She directed me to ask my neurologist who are his mentors, and ask if he had PNFA who would he see. She said the advancements on neurology have expanded worldwide. She was fired up, and she is going to advocate for me.

Immediately my body responded. I felt lighter, and I am not afraid of slipping into oblivion. I have energy spurts occasionally, like today when I can write (slowly). I wish I could get my family on board with me. I can’t do it alone. I have been there before – feeling helpless, not knowing what to do, too busy with my own crisis in life, offering a general statement of assistance, assuming others would help. My mother is so supportive as can be living on the East Coast, and my mother-in-law and my sisters-in-law are very loving. But there is research and contacting and coordinating that may be hope for treatment that isn’t progressing. There is the daily routine that I am supposed follow with my nutrition and supplements and I just don’t have the focus and energy to do that. I can’t drive. I have vision loss.

My love is a constant in my life. He supports me unconditionally. He respects my decisions. He thinks about me when he is away from me. He does loving little things, and loving big things. Even when I am sick and on the couch all day in my robe, he thinks I am beautiful. I don’t know how he does all that he does for me. It is too overwhelming to be the sole caretaker of me.

josh back from alaskaMy 18 year old son has given me the greatest gift a few days ago. I torture myself about not being the mother my children deserves, as I always wanted to be. He saw my crying, and he hugged me and kissed me. He said he could see I am a fighter, he told me everyone can see it. He said I am the strongest persons he knows, and he is proud to call me his mother. His love into action by saying that gave me peace.

A wise person told me “you are not dying, even if you are on death’s door; your are living until your last breath.” I am writing this to get out the message don’t give up on yourself and your love ones. Love is action. Action is hope. Hope is life. Don’t give up. I won’t.

Caroline Laser Sati

Caroline Laser Sati

January 16 2015

 

 

Renowned Research Pathologist Dr Alan MacDonald on Norvect Lyme Conference and the late Dr Burgdorfer

Katina I. Makris

One of the most popular Lyme Light Radio episodes of all time was the historic interview Dr Alan MacDonald gave me last spring on the connection between Lyme disease and serious neurological disorders such as MS, ALS, and Alzheimer’s Disease. Dr MacDonald is a veteran researching pathologist who personally knew and worked with Dr William Burgdorfer, the discoverer of the Lyme disease spirochete bacteria, and he brings a wealth of knowledge on the USA’s fastest spreading infectious illness: Lyme disease. He will share first hand insights into Dr Burgdorfer, the early days of Lyme in the 1980’s, and the latest news coming from the Norvect Lyme Conference in Oslo, Norway — neurological illness as pertains to tick borne diseases.oie_14181430n2s8vIE3

With great honor, I welcome Dr Alan MacDonald back to “Lyme Light Radio” this Wednesday December 3, 1pm PT/4 pm ET. Make sure you join us as this will be an important interview, with a…

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Triumph – MayDay 2014

triumphant mayday 2014prayer warriors mayday2014lyme quilt mayday2014

penny green hat mayday 2014penny mayday2014mom mayday2014
IDSA protest mayday2014 4
Josh Bruce mayday2014 IDSA protest mayday2014 7 IDSA protest mayday2014 6 IDSA protest mayday2014 2 IDSA protest mayday2014 IDSA protest mayday 2014 5 IDSA mayday2014 3 IDSA mayday 2014

It was an experiment.

To fly across the country. To participate in the MayDay2014 protest outside of the IDSA in Arlington VA. My mother offered to take me down from New Jersey to the protest, and my Aunt Penny from San Diego would be joining us too. My daughter  Arielle lives in DC. Three maternal generations would be there! For months I had been looking forward to attending this event. MayDay Project was something I could do that was constructive in this war on Lyme. And I was looking forward to meeting my East Coast Lyme Facebook friends.

On the morning I left California, I had serious second doubts whether I could go at all. I had a serious hangover (from Lyme – I don’t drink), I was shaky, lightheaded, and exhausted. My husband Scott did as much as could for me to get me ready; he made breakfast, packed snacks, got the house ready and helped pack. We said goodbye to our doggies, Samson and Earl.

We flew United on earned miles. All the United air crews and ground personnel were great. We used wheelchair assist and that worked fine because I couldn’t have walked between the terminals without taking frequent rests and risking a heart event. But the hours of sitting up on the plane exhausted me. I can’t sit in a regular chair for more than ten minutes, and even that is uncomfortable.

We visited family in New Jersey, and attended my mother’s retirement party from Cook College, Rutgers (she will never retire, she exhausts nine year old children with her drive and her curiosity). We stayed with my mom on the farm – it was so beautiful! It felt good to be back in New Jersey surrounded by family.

My son Josh went hiking with his Uncle Jim and his cousin Brian. He came back with a passenger. A little tiny tick on his upper thigh. I collected it in an empty medicine bottle with a damp cotton ball to send it to be tested. We called our doctor and set up an appointment. Josh was returning with Scott earlier than me. The next day Scott was walking around the farm woods and came back with a tick as well in his groin region. They apparently didn’t believe me when I said to put tick protection on. I collected that one as well and sent if off to UMASS.

UMASS has a great lab, it is easy to sign up online. One tick was positive for Bb and Babesia, and one tick was negative. They tested for three things. They catalogue the ticks and store them. There was a long list of add on tests that we can order later. I sent my boys home to see our doctor in California.

Girls trip to DC. My mom, my Aunt Penny, and my daughter. We brought my wheelchair down with us. We stopped at a rest stop on the Turnpike and bought Lime green hats.We checked into an Arlington hotel just up the road from the protest and headed over to the planning meeting. Quite a few people had attended the protest before, and a few people were organizing the event. Melissa Ann, Jules, Lisa, Allison, Sabe Mo, Bruce, and Josh. Other people were instrumental to the protest but they just couldn’t make it.

lyme quilt caroline mayday2014Josh introduced the strategy . Recognition, research, revise the guidelines. We were not advocating long term antibiotics treatment.  Because the IDSA characterizes us as Lyme loonies, we had to come off as serious and respectful. Josh and his team had worked closely with the local police to make sure we were following the local laws. They appointed my mother and my aunt as marshals, along with other volunteers. They had ready at hand lime green poster  boards and sharpies; we made signs. Several people invited me to go with them to get a late dinner. I was happy they invited me and I wanted to get to know them, but I was too exhausted.

the gang mayday2014The next morning was a bright sunny morning. There were fears that it was going to rain but it was a perfect day for a protest. You couldn’t miss it – a throng of people dressed in neon lime green holding lime green posters; it was a beautiful sight. I was nervous but determined. We parked ourselves on the corner and quickly joined the protest. Such energy, such camaraderie. People were in wheelchairs, people with walkers, people with IV poles. Quite a lot of people knew each other from other protests. Newcomers were made welcome including me.

caroline IDSA mayday2014It was lovely to be there with my family. My daughter, my mother, and my aunt quickly made friends (that is my family!) I felt loved. Lots of people had to lie down during the day from exhaustion. I had to too even though I was in a wheelchair. I just couldn’t sit up anymore. It felt safe around people that understood without asking questions.


too much mayday2014 2We gathered lots of attention. Passersby were curious and empathetic to our cause.

We shut down the IDSA on the second day. They sent out two times personnel to talk Josh, one time, and the other they let at Allison and Josh go in and address what the protest was all about. They said “We hear you.” That felt like a triumph. In all these years that Mayday protest has been going on, they never gotten feedback like that. You could feel the vibrance, relief, excitement, hope. 

prayer mayday2014Reporters started showing up. One TV reporter was great! He constructed a thoughtful piece and MyFoxDC aired that night!

Afterglow. I completed my trip by resting at my sister Jeanne’s shore house in Ocean City, NJ. I crashed for three days. I only went to the beach once.

I flew home alone. It was amazing. United made me feel safe and attended to.

I was glad to get home to my love and my doggies and my couch. I felt satisfied. I made it across the country to connect with family, and to do something constructive. I made it back home! The experiment succeeded beyond my expectations…

 

 

 

Help is on the on the way

navarrobeach2012 5I can’t remember where I got this list from. Probably from Lisa Hilton’s whatislyme.com

Here is a great list of medical financial assistance:

Needy Meds
http://www.needymeds.org/

Demystifying Needy Meds Card (when it can help withor without insurance): http://blog.needymeds.org/2013/06/19/demystifying-the-needymeds-drug-discount-card/#.UcddupVECbA

Lyme disease NeedyMeds Resource Page
http://www.needymeds.org/resourcepages/lyme%20disease.shtml

Financial Assistance Information from National Institutes of Health
http://www.nlm.nih.gov/medlineplus/financialassistance.html

Lyme Aid 4 Kids (Patients Under Age 21)
http://www.lymediseaseassociation.org/index.php?option=com_content&view=category&id=105&Itemid=340

Lyme Grants
http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=391&Itemid=479

Lyme Light Foundation (FinancialAssistance for Lyme Treatment for Patients ages 3-25)
http://www.lymelightfoundation.org/grants/

Net Wish
http://www.netwish.org/Request_a_Net_Wish.html

What is Lyme Resources
http://whatislyme.com/assistance/

Bridges to Access
http://www.bridgestoaccess.com/
http://sonyafightslyme.blogspot.com/2011/05/financial-assistance-for-lab-testing.html

Partnership for Prescription Assistance
http://www.pparx.org/

Prescription Hope
http://www.lymedisease.org/news/touchedbylyme/prescription_hope.html

Rx Assist
http://www.rxassist.org/

AAA Members Prescription Savings
http://www2.caremark.com/aaa/how.htm

GlaxoSmithKline Bridges to Access
http://www.curesearch.org/resources/resourceservice.aspx?ServiceId=3

Transportation Assistance and Free Air Fare
http://www.curesearch.org/resources/resourceservice.aspx?ServiceId=3

Payment to Caregivers
http://usodep.blogs.govdelivery.com/2012/11/20/can-full-time-family-caregivers-get-paid/

Free Drug Card (Rx FinancialAssistance)
http://freedrugcard.us/create-card.html

Modest Needs
https://www.modestneeds.org/index.asp

Clinic of Angels
http://www.clinicofangels.org

Lyme Disease Fundraisers
https://www.facebook.com/groups/113152418704296/?fref=ts

Saving Money on Lab Testing
http://lymedisease.org/news/touchedbylyme/save-money-on-labs.html

Government Benefits by State:
http://www.benefits.gov/benefits/browse-by-state

Feeding America (Nationwide Food Bank Locator)
http://feedingamerica.org/foodbank-results.aspx

National Association of Area Agencies on Aging (Services Available to Older and Disabled Americans)
http://www.n4a.org/

Suggestions for Getting By on a Limited Budget
http://lymeunderground.com/survival-tactics-getting-by-on-a-limited-budget/

Financial Assistance for Canadians with Lyme disease http://www.LymeSAVERS.com

Infusing for Lymies (Free Online Book with Suggestions on Saving Money with IV Treatment)
http://issuu.com/lymeunderground/docs/infusingforlymies

Filing for Disability When You Have Lyme Disease
http://lymedisease.org/news/touchedbylyme/ssdi.html

Lesko.com (Wide Variety of Free and Reduced-cost Health Services)
http://www.lesko.com/do-not-wait-for-obama-care.php

Start a Gofundme fundraiser. Notify me and I will share your fundraiser.

To Be By Your Side

forever

“To be with you in the valley where we dare not speak..”

Nick Cave, and the movie Winged Migrations.

This is one of my favorite pieces about love.

Enjoy

 

 

Isolation

navarrobeach2012 17

Isolation is my unwanted friend. 

He showed up in 1994 and he has never left my side. Isolation took control of my life after others abandoned me. Healthy people aren’t comfortable around chronically sick people. They want playmates. The doctors along the way gave him more power by giving me diagnosis that they were unsure of, and couldn’t do anything about. The doctor who labelled me a hysterical woman and a malingerer gave him the most power over me. At times I thought I was crazy, but I knew I was terribly ill.

Lyme Disease slowly joined up with Isolation. Late Stage Nueroborreliosis and other co-infections created a thin veil between me and the rest of the world. I lost my brilliant mind, I lost my profession as a psychotherapist, I lost my ability to speak, I lost my concentration, I lost my athleticism, I lost the ability to drive. Over time the veil became a high thick wall. Isolation and Lyme got between my relationship with my friends, my family, my marriage, and most tragically of all my children. I gave up on seeing doctors, I gave up on life.

fallen angel

fallen angel

 

Once again, after two years went by, scared by my degeneration, I got up the strength and the courage to face doctors. I demanded the top experts in their field, and paid dearly for that. ALS, TIAs, Progressive Non-Fluent Aphasia. For which there is no treatment. The doctors left me to die a terrible death. They talked of palliative care. The walls closed on me even tighter, higher and thicker. Sobbing I went home to die. Planning my estate (what little I had), family planning, considering “self -deliverance.”

Six months later I had declined so severely. I saw a spark of light in my soul. I believe the angels directed me to go to that support group one Sunday. The support group was for Lyme. I barely made it from the car into the hospital cafeteria where the group meets. I sat shaking, lightheaded, alert. Isolation stayed behind, right outside of the door. For the first time, I had hope. I was surrounded by people who told my story. They had concerned look on their faces, and told me to go to a “Lyme literate” doctor right away. They said I had a very complicated case of Lyme. Go figure, I had been sick for 45 years.

my ancestors church in Sweden

my ancestors church in Sweden

That first appointment was surrounded by light. A very diminutive angel genius doctor had gone over my entire life medical history! The hope was bursting open. Isolation seemed like a long forgotten friend.

Eight months later Isolation was still by my side. The treatment is so heavy, and the disease is advancing. I can’t talk on the phone, I can’t talk in person. I can’t think fast enough to use assisting devices. People are still uncomfortable around me.

One year later I discovered a vibrant Lyme community online, blogging and Facebooking. My treatment is slowly starting to work, at least it has stemmed the tide of progression. Isolation still lives with me, but it is not a barnacle hanging on to me. I managed to travel across the US to join the Mayday2014 protest outside of the IDSA. My mother joined me, my aunt joined, my daughter joined me. I met so many friends from online, and new friends that are so lovely and courages and strong. When we are chronically severely ill, it takes a lot determination and luck to be able to come together physically. Such love, determination, spirit, and strength. The thick wall has turned into a veil again.

I wouldn’t wish Isolation on my worst enemy. It tries to reduce me to self annihilation. But the world and the angels seems to want me around. So many lives are lost with Lyme disease combined with Isolation. And tragically most of the people and children that lost their lives have not known that they had Lyme Disease. Even when we know we have Lyme Disease, sometimes it is too much; too much pain, losing our minds to dementia, no treatment, no support, Isolation, no hope in the future; and we choose to stop it. That is not my story, but for the Grace of God go I.

manasquan twilight6This post was inspired by Lisa Hilton and all the fallen Lyme Warriors. She has orchestrated major media awareness.  Currently CNN is courting her. She is great Lyme Warrior for all of us. For the fallen Lyme Warriors, may you fly on the wings the angels…

It is larger than all of us…

The monster of Lyme Disease sometimes seems undefeatable. Tonight, in a conference room in Arlington VA, we were reminded that the fight is bigger than “I.” Imagine a room full of sick, pissed off, tired, smart people and the people who love them. There are all kinds of groups like this one around the world. We have to get together, all work together on one common goal. CURE. If we do that we can become collectively larger than Lyme Disease.
We are on the verge of creating a tsunami that the world can’t ignore. We are shaking up the institutions that try to suppress us. We have the talent. We have the drive. We have the science. We are legions of Lyme Warriors.
Recognition, Research, Revise.
We are descending on the IDSA tomorrow and Friday to represent the armies of people that are too sick to be here. At the same time we will be using social media to blitz the IDSA.
We are live streaming. MayDay Project is about activism.
Join us.
Share, share, share

For more information find us on Facebook – The MayDay Project, find us on Twitter @theMDayProject, and find us on themaydayproject.org.
#mayday2014

Lyme Warriors from Around US to Gather at IDSA Headquarters and Demand Changes to Guidelines for Lyme

Lyme Light Radio Reaches Out to Mainland Europe

If you haven’t discovered Katina Makris, of Lyme Light Radio; do yourself of favor – listen. You can visit her blog at katinamakris.com.

Who/What/When/Where/Why: Everything You Could Want to Know About DETOXING

This a great article on detox by Victoria, Lemons ‘n Lyme, lemonsnlyme.wordpress.com. It is so upbeat and clear. I know there is a lot more technical information out there on detox, but my Lyme brain won’t let in so much info. Thank you for writing this article – I can feel your joy behind your words Victoria!

Lemons 'n Lyme

If you’ve had Lyme for a while you know how important detoxing is. If you are new to Lyme, you may not. I didn’t know about the importance of detoxing until over a year into treatment! But let’s back up a few steps. Detoxing is not only important for those with Lyme disease, it is important for EVERYONE. Why? Because our environment is filled with toxins that are getting into your body! How? Through pollutants in the air, the water you drink (if it is from the tap it contains antibiotics, pesticides, heavy metals, and other chemicals), the products you put on your skin (if not using all natural products), and the food you eat (especially if you are not eating organic).

Everyone needs to detox as our environment in general is filled with chemicals that your body isn’t meant to have in it. But many of those with Lyme…

View original post 3,079 more words

Scribbles & Crumbs

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Natural History

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Dr. Pamela Costello MD, PhD

Holistic Neurological Medicine - 11000 Spain Rd. NE Bldg A - Albuquerque, NM 87111 - 505-503-8325

Erika Fuego & Soul Searching

These are my thoughts, feelings and words. Welcome to my mind.

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Living with Late Stage/ Chronic Lyme Disease, coinfections (tick-borne diseases) and my Treatment

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Dedicated to raising awareness of ALL tick borne diseases, offering support, and providing referrals for information, research, and healthcare choices.

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The Person Next to You

... we're not alone in the journey of life!

lymewhisperer

We're not crazy. And we're not alone.

Katina I. Makris

Journeys in Healing

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