Pain Tolerance and the Chronic Pain of Rheumatoid Arthritis

“While you might expect healthcare professionals to understand better than most people the long-term impacts of living with chronic pain, I don’t always feel like this is the case. There have been quite a few scenarios where I felt like a healthcare professional wasn’t taking me seriously when I said I was in pain because I didn’t look like I was in pain.”

https://rheumatoidarthritis.net/living/what-does-pain-actually-look-like/

How I look vs. how I feel
Hard to hide “pain eyes,” but I always try for a positive attitude, despite bad chronic pain. After over a decade, I’m used to pushing through and functioning the best I can – with a smile.

#RA #rheumatoidarthritsawareness #ChronicMigraine #migraineawareness #Chronicillness #chronicpain #makeinvisibleillnessvisible

Without OPIOID pain relief…

The faux Opiate War – it’s been a battle cry for so many politicians, and the government has enacted legislation to battle physician’s ability to prescribe these medications. Now, the war has moved to conquer other medication classes… benzodiazapines, muscle relaxers, barbiturates, and more.

Why do I call this a faux war? Because 1) medications are tools to use, they are not the enemy. And 2) not every patient is an addict waiting to happen. 3) Dependence is not the same thing as addiction. And 4) one of the most common reasons Pain becomes Chronic Pain – is because the short-term pain is not treated/managed appropriately. By restricting these medications, the legislatures are potentially creating a multitude of chronic pain patients. This is something war on opioid people do not seem to comprehend. For them it’s simply: opiates = bad.

It’s your Healthcare! It’s too important, individual, and intimate – your Healthcare should be between YOU and YOUR DOCTOR – the government should never be involved! However, our society just does not understand. There is SO much education and advocacy needed about Chronic Pain. There are so many social misconceptions and so much widespread ignorance.

As a person who lives with chronic health conditions which frequently result in chronic pain, the opiate misconceptions are exhausting, scary, and shaming. It is not our fault we are in pain. We are seeking relief, not pills. We are trying to LIVE some kind a life, we aren’t feeding a drug addiction.

#chronicpain #patientsnotaddicts #ChronicMigraine #migraineawareness #Chronicillness #InvisibleIllness #Healthcare #waronopioids

One Migraine Story

Sometimes there’s a Happy Hour school parent meeting you want to go to on a Wednesday evening… you already have a low level migraine, but a cherry limeade cocktail🍹 with other parents sounds wonderful. You know this will make your migraine better for a moment and then worse later. Although sometimes it won’t.🤷🏻‍♀️ It’s a toss up and it’s worth it because community and friends are worth hurting for.😍 You have a wonderful time, meet new friends, connect with others.

Pretty drink: Tito’s vodka mixed with Sprite and cherry. Normally, high-end hard alcohol will not trigger migraines for me. But if I already HAVE a migraine, it is not recommended.

Although you’re invited by a small group “to keep the fun going” and have dinner at a nearby restaurant, you sadly know you must decline. You’ve not taken your sunglasses or hat off for the entire meeting. And you know you’ll already be paying a price for the 60 minutes of friendship you’ve just enjoyed. Chronic Migraine demands a high price. Always.💰

So you go home. And you take your medicine like a good patient.🌟

The next morning is bad. Higher level migraine. You’re up for just a few minutes to kiss your daughter🙎🏼‍♀️ goodbye as she leaves for school🏫, make coffee☕ and feed the dogs.🐕 You cannot remain on your feet with eyes open – the migraine is too much. You take your medicine 💊 and encase your head in ice 🧊 and climb back into bed, hurting.

A few hours later, you wake with a start: SURPRISE – you’ve slept for 4+ hours, your migraine is lower, but still present, and you have your ESSENTIAL Botox for Chronic Migraine appointment in one hour! It’s a half hour away. You can make it, but it will be casual doctor appointment dress day🙂

#WaitingRoomShoePic in the car! Covid protocols

The appointment takes only 15 min and nearly painless despite 40+ injections in shoulders, neck, occipitals, temproals, forehead & jaw.💉 It’s pleasant seeing your neurologist this day. Even though last time (12 weeks ago) she was cranky & made you super sad😢. Covid precautions in place at the office, you’re screened before entering exam room and there are only 2 employees in the building (including your neuro) so there’s no waiting. The botox “wheels” have even started to disappear 7 minutes after the injections.

Just 7 minutes after procedure. Some botox injection “wheels” are visible with blue asterisk. Red arrows display the reddened area of my forehead which is not related to botox, but instead is a symptom of my migraine.

This is a sacred appointment… you never miss the day and have been in botox therapy for #ChronicMigraine for a decade. Your next appointment will be early January and you’ll be required to pay the full 2k since your deductible will be reset for the new year.🥂 You’ve already started saving for that. Today’s appointment is 100% covered.🙂
It’s helpful sitting in the car🚗 a few minutes after your botox treatment to settle your body after the barrage of injections💉💉💉💉💉, collect your thoughts and physical well being, and even document your story.✍

You’ll drive home now. Get more ice❄ for both your forehead and back of neck occipitals, rest in your bed🛏 with your head elevated, and maybe even sleep.😴

Basically the day will be done, even though it wasn’t much of “a day” at all. But you did “a thing” and now you can not do anymore “things.”😔

This is one migraine story. One story. Just a glimpse of one – not the entire story. With migraines almost every day, it hardly seems believable that you have about 18 of these stories a month🗓. Many people won’t understand what you’re talking about when you mention Chronic Migraine – they will find it nearly impossible to believe it can happen so frequently (because they had a migraine and they were incapacitated). There will be people who tell you they are “in awe of your strength.” And you’ll be grateful, so grateful, for their kindness and support. But you won’t feel worthy of their praise. You won’t feel strong or inspiring. You’ll feel tired, so so so tired. And you’ll feel so sad that you physically cannot do what you want to do, or what you used to be able to do. You’ll feel so frustrated that you let people down, can’t care for your family like you want to, sometimes can no longer work your career. You’ll battle depression and so much anxiety, because you will never know when the migraine will finally end, and you will have no idea when the next will strike. You will lose the ability to be reliable – you will need to cancel events you really want to attend. Other events you can not miss – you’ll need days and weeks to physically prepare for them. You’ll have a love/hate relationship with medication – because it sucks, but you’ll need to carry it with you at all times. You’ll spend countless hours in a dark room alone and isolated.

And this – this is the story of one migraine.

Covid precautions are not stopping botox treatments AT THIS TIME in Austin, thank goodness!

* * * * * *

Botox for migraine has been FDA approved since 2010 for Chronic Migraine, which is defined as 15 or more migraines a month for at least 3 months. Insurance will want to see you’ve tried cheaper preventatives before approving botox (anti seizure medication like Topamax, cardiac medication like Propanolol, anti depression medication like Amitriptyline) In my humble opinion, it is THE most effective preventative migraine treatment to date. It is administered every 12 weeks. It is a cumulative treatment, so the more you get it, the better the results. Migraine sufferers have varying results, but insurance providers prefer at least a 40% improvement to continue paying for treatment. After some insurance finagaling, your insurance approval will allow for 3 consecutive treatments before reevaluating. It is important to allow yourself those three treatments. Botox is rarely a “magical juice.”

For me, it makes my migraines more responsive to medication, it decreases the severity and duration of my migraines. It does not change the frequency. I still migraine almost every day. Botox injections are normally pretty painless. Although that may be dependent on the syringes used and the administrator’s experience. Most injections are painless, some uncomfortable and some as painful as a slight bee sting. Some injections close to your ear, you’ll be able to hear a “crunching” noise as the tiny needle breaks the skin. Botox is injected juuuuust under the layer of skin – very shallow. It targets the muscles exacerbated in migraine. Because it is injected directly into the muscles, it is unlike most migraine preventatives that are taken orally or systemically and require metabolism in the stomach, liver, etc. For this reason, there are very very few negative side effects to botox. In ten years, I have had one small bruise and one left eye droop, both resolved in weeks.

It is important to take note your anxiety with botox. If it’s your first time, you may be very nervous and it may be helpful to bring relaxing music for earbuds. Also, icing the areas on your head (both before and after) will help with any pain from injections you may experience. Remember that even if the experience is not painful, your body has been assaulted with many tiny needles and you may experience a systemic body response. I used to go straight to work after injections, but now, I feel I have to rest. It often triggers a feeling of malaise and/or migraine, which resolves in about a day.

It’s important to remember not to apply pressure to the injection sites for approximately 12 hours post procedure and plan on some rest post procedure as well. Use ice for any irritation. Elevation of your head also helps the botox absorb effectively.

The general botox for migraine “map:”

After years of working with my neurologist, we have come up with a “personal botox map” specific to my needs.

I strongly recommend every Chronic Migraineur at least try botox as a preventative with a certified botox for migraine provider, if it’srecommended. It is worth the try! And it is nothing to be afraid of.😊

A NEW CHAPTER, by a Baylor mom

This was on the Baylor Mom’s Facebook page. She nails it.

I watched him walk away as a single tear rolled down the side of my cheek behind my big sunglasses. The soul-crushing sadness washed over me. He turned around one last time before entering the building and gave me a small, sad smile.

My heart was in my throat. I wanted to run to him and hug him and never let go. There was so much I wanted to say . . .

I wanted to tell him just one more time how much I loved him and how proud I was of all that he has accomplished.

I wanted to tell him I was sorry for all the mistakes I had made as his mother. I tried my best, yet there were so many times I struggled and felt as if I had failed him.

I wanted to remind him to make good choices and have fun.

I wanted to tell him to find his tribe of friends that will last a lifetime. The kind that will tell you when you mess up and stand up for you at your wedding and love your children like their own one day.

I wanted to tell him to be careful, to wash his sheets and to never get in the car with someone who had been drinking.

I wanted to tell him that I believe in him and pray for all of his dreams to come true.

I wanted to remind him to be kind and respectful and help others.

I wanted to tell him to be humble and honest, to work hard and dream big.

I wanted to tell him to study hard and do his homework and not to eat pizza every night.

I wanted to remind him to clean his toilet and brush his teeth and clean the lint out of the dryer vent.

I wanted to remind him to turn off the stove when he was done cooking and never leave popcorn unattended in the microwave.

I wanted to tell him to sit with the lonely and stand up for what he believes in and to stay true to himself. Be real. Be authentic. Be you.

I wanted to remind him that God is always with him and to let God’s light shine through him in all that he does.

I wanted to tell him to have a blast, take risks, be bold and adventurous.

I wanted to remind him that no matter how big he gets, I will always be his biggest fan.

But I didn’t say any of those things to my son. Instead, I mirrored his small, sad smile and waved good-bye as I watched a piece of my heart walk away . . . to start his new life at college.

I closed my eyes and took a moment to embrace this overwhelming sadness in this bittersweet moment, marveling at how I could feel so lost yet so proud at the same time. At this point forward . . . life will be different. Not bad, not worse . . . but never the same again. It will forever be coming and going and no longer staying. It will be recognizing that my son is now an adult and is in charge of making his own decisions. It will be taking a step back . . . no longer a caretaker in his life, but yet always there for him if he needs me. It is letting go of that little boy who loved Ninja turtles and Legos and embracing the man that he is now. He is ready and this is his time to grow and shine and learn and thrive. As a mother, you spend your whole life preparing your child to leave you and when that moment comes, it’s heartbreakingly amazing and awful at the same time.

As we make the long drive back home, my heart just aches. I know it’s okay to be sad. It’s okay to admit this is hard. It’s okay to have a good cry. But I also know that I can’t stay in this place of sadness. I have to put on my big girl pants and wash my face. I have to thank God for this glorious gift of motherhood that is both hard and beautiful. I have to keep moving forward with hope and gratitude for each day. I remind myself that I can do hard things.

And I know I can because that is what motherhood is all about . . . surviving the hard and loving boldly through all the messy, all the ordinary, all the beautiful, heartbreaking moments. I’ve been doing this since the day he was born and I will continue to do so in this letting go season. And always, I will thank God for my son who will forever hold a piece of my heart.

When we finally get home, I realize that I did it . . . I survived college drop-off which is a day I had been dreading for years. And I notice that my sadness has been replaced with a feeling of excitement and anticipation because I am already looking forward to that day when my son comes home and walks through my front door again.

And I smile sadly as I realize that a beautiful, new chapter of life has begun . . .

My own “babies” spread their wings: