The California Fires–A Story of Chronic Pain

The California Fires–A Story of Chronic Pain

By Ed Coghlan

You may remember that our friend Terri Lewis, Ph.D. ran a survey trying to identify chronic pain patients and the issues that face them.

During the recent California wildfires, Dr. Lewis remembered that she had received several responses from chronic pain patients who lived in Butte County in rural Northern California and in Ventura County in Southern California and reached out to them via email.

She shared the story of one person who was right in the middle of the Camp Fire in Butte County. The response of the patient was worth sharing (we are not sharing her name, but her words are powerful and serve as a reminder that often in tragedies the loss is magnified for people with disabling conditions).

Her response:

“I don’t mind if you want to post this response to the chronic pain website for encouragement for others to value their lives even with chronic pain.

“We are safe but unfortunately lost our home and everything we had. We almost lost our lives trying to get out as we had no notification until the fire was right there and exploding all around us. I was terrified and was sure that we were going to burn right in our car stuck in gridlock trying to escape. I have C-PTSD and that has made it worse, not to mention my horrible chronic pain. But we made it and are just trying to deal with the devastation and recovery. Thank you for your concern and care.

All I can say is be thankful for your life and love your family because you never know what tomorrow brings. Fortunately we have family that are helping us get through this and are having to relocate about 500 miles to Southern California to start over with family.

This is temporary until we find a place to live again. We won’t be coming back to this area again because of the trauma and because our whole town is gone, and it will take years for them to rebuild. I also will never live in an area that is so small that it’s almost impossible to escape when something like this happens. I also will never live in the mountains again because it has traumatized me so much that it terrifies me. Bless the police and fire fighters that put their lives in danger trying to get us to safety. Some residents didn’t make it (88 people so far) most of them elderly and many (203) are still unaccounted for. I pray for all of them. Love your family and cherish your life even if you are sick and fighting chronic debilitating pain every day. Life is precious.

It will be very hard rebuilding a life with nothing, but we have some insurance and we are trying to find someplace that we can afford now as our income was already limited in this area but everywhere else is a lot more expensive, but we are trying. Thank God for my family who was here to come to and helped us by letting us stay with them. I don’t know how I would have made it in a shelter being on oxygen 24/7 and a ventilator when I sleep for my respiratory failure risk. Not to mention being very disabled and unable to move around much due to my rheumatoid arthritis and pain with five autoimmune diseases. But I am thankful every day to be alive even with difficult days every day. Life is precious and so are loved ones. Tell them every day you love them because you never know what may come. Bless my 89-year-old father for being there on the cell phone with me while I was trapped in trying to escape with my 65-year-old brother, who is my caretaker too, in the car in front of me with my medical equipment that he could grab so I would be able to breathe wherever we ended up. My father talked me through my terror and tried to comfort me as best he could. He too has been impacted by this event and trauma. I am so lucky to have such a loving family.”

(Editor’s Note—Thanks to Terri Lewis for not only sharing this note, but also for thinking of people in need (like she always does.))

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Authored by: Ed Coghlan

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Amy

That person has a great attitude and perspective. That can be half the battle. I have been disabled by Fibromyalgia my entire adult life. When I got sick, even Mayo Clinic wasn’t dx’ing Chronic Fatigue (stupidest name for an illness ever, I read once that calling this Thing “chronic fatigue” was like calling lung cancer “chronic cough syndrome “) or Fibro.
Anyway, in the past 27 years of not getting to do or have – if I list everything, I’ll negate my point – normal life stuff that I see people take for granted, I know that being bitter or mourning loss every day? That makes nothing better, and many things worse.
I absolutely am not saying never complain or never mourn. Venting occasionally is helpful, like letting air out of a balloon so it doesn’t POP. Recently I saw a family walk by with a tiny toddler in tow. At first, it made me smile. Then it was like something just cracked inside me cracked and I cried and cried.

Chronic illness, chronic pain? That’s with us every day, for most of us, a “good day” means you can sit at the table to eat, and you might hurt more the next day, but at least you aren’t hurting for no reason at all. That’s still hard for my brain to deal with, after almost 30 years of pain and almost complete alone -ness. I still hope SOME DAY a doctor or scientist or whoever will fight for us like they do for cancer, or more successfully, HIV/ AIDS. But chronic complaining, for ME, makes me feel worse. My parents are now both in chronic, terrible pain, and I hate it for them. They both talk often about how much pain they’re in, but don’t want help or advice. So I have this example of not saying “This is the worst day ever!” , unless it really is & ppl need to know. They aren’t super interested in advice, but my gosh, what’s the point of 30 years of this if I can’t help? So I keep trying. Find something that makes you smile, and treat yourself to it. Often! Even just cats on the internet. :0) *gentle hugs”

F.S.T.

I absolutely cannot bear to read the story of this partner in pain all in one sitting. It so moves me that a few lines at a time is all I could muster. Which tells me that, by my having very real trouble just reading it, how much more has she suffered by living through it?

I’m in a flare right now. So God bless you and your family, and keep fighting!

Lenore Arbaugh

God bless you and help you start over again. I often think of the disabled people when these disasters happen. We lost power recently due to an ice storm and it was difficult due to my use of bi pap and O2 at night. That is a very little thing compared to what you went through. I am also so impressed with your father at 89 being there for you and talking you through the trauma. What a great man he must be! May everything fall into place and doors open for a new life for you and your family!

Maureen M.

May God bless and help this person, her brother and her father. This is a poignant story of trauma and survival while living with pain and other conditions. I cannot even begin to imagine all that they (and the many others) have been through and of what still lies ahead for them. When we live with our lives in pain we tend to have pretty strict routines in our little worlds of getting through our days/nights. When that is interrupted it can create immense havoc on our bodies. And as others mentioned…let alone now having to find doctors who will continue to prescribe medications asap etc. Thinking of all of that stress and the road ahead of them breaks my heart. Know that I am here offering prayers for your strength each day and the help that you so deserve. Hang in there!! Big hugs.

Kris Aaron

This story motivated me to put together a “bug-out bag” to grab in case of emergency evacuation. It holds my passport, all my medication, as much cash as I can pull together, credit cards and a list of computer passwords.
Sadly, we can’t rely on our doctors to provide whatever pain medication we lose during an emergency, and some may take the opportunity to discontinue our prescriptions entirely. This is yet one more cruelty inflicted on pain patients who are already considered “drug seekers” and “addicts” because we need opioids just to get through the day.

Cindy

I’m so sorry to hear about your ordeal. It sounds surreal. Good luck in finding a new home.

Julia Heath

My heart breaks so much over the tragedies in California. I thank the Lord that so many were actually able to get out when there was no warning until fire was upon them, and I mourn the ones who lost loved ones. My prayers are with them often. Thank you for the emphasis on loving your family and friends – despite our pain it still can’t be all about us as we need to be giving as much love and care (even in the limited ways that we can) as we are getting. I often try to encourage my fellow chronic pain patients to take care of those who take care of us. All life is precious – we don’t need to wait for a tragedy to realize how valuable others are. Thanks again for this important story!

Barbara Snow

Just maybe one of you family members could build an addition to one of their homes, like a mother- in-laws apartment. Then you could remain close, plus help would be right there. Just a thought. With love. 🙏

April DAwn

What happens to the people who have severe chronic pain, and in all the terror and chaos, don’t (or can’t) grab their pain medications? In all the years I have been know people who take pain medications, and then become one myself (which is over about 30 years), we are ALWAYS told – ALWAYS – that if our pain medications (no other medications have this – just pain medications) are lost, stolen, or in any other ruined (such as liquid spilled on the Extended release Oxycontin pills, they stick together, the covering comes off when you try to separate them so they are too dangerous to take) NOT only will they not replace those medications, they will no longer prescribe to you at all! I was even told that by my doctor of over 10 years, when nothing had happened or ever had, she suggested I get a P.O. box so people couldn’t break into my post box at the apartments, AND buy a very strong heavy locker to keep my meds in at home. And this is with no problem EVER with my pain medications. We are ALWAYS treated guilty – no chance at proving innocence – even though they have no right to insist we prove anything in the first place – as we didn’t nothing wrong, – we haven’t been caught or accused or given a lawyer or gone to court or convicted – we are just guilty period – and treated that way – so seriously – what happens in those situations when, say, a 2 week supply of pain medications are burned up along with everything else?