Surviving a Chronic Illness Life requires a lot of time and energy - it's a full time job.
I'm in my 40's, married to my bestie and soulmate for 25 years. We have 4 amazing kids who are now young adults. I'm an RN but no longer able to practice due to my health. Everyday I battle Chronic Migraine, Rheumatoid Arthritis, Sacroiliac/lower back issues, Depression & Anxiety.
For so long I felt so alone, and it nearly killed me. Connecting to the Chronically fabulous community saved my life and I would only hope no one else go through that loneliness and anguish.
This is not the life I expected, but it is My Beautiful Migraine... and everyday I strive to learn and love. Making art through graphics, words and photographs is something creative I can do in my suffering time in bed. It's therapeutic and gives My Beautiful Migraine "voice."
Thanks for reading! :D
Day (I can’t remember) of this Migraine episode. Firing everything at it, but Migraine will not be denied. Every hour, it eats more away of me. Migraine is the Angry Hunger.
I woke out of a nightmare this morning with a level 9 on the migraine scale. Cracked my eyes open… it was lighter in the bedroom so I knew it was day. Couldn’t get up out of bed even though I had to pee. Too much pain. With my right hand I could reach into my night table mini pharma for a Maxalt. Took me awhile to get the blister pack open. Got the pill in my oral orifice and grabbed my water bottle to swallow it down… like a jagged little pill… it feels so good… swimming in your stomach. I needed to take 2 sips to get the Maxalt down and spilled water out the side of my mouth over my pillow.
But the migraine was so intense that I didn’t care at all about the spills.
Because I could not get out of bed still for an ice crown run, Cefaly would have to do. After waiting a few minutes… I was able to reach again into the night table mini pharma for my Cefaly. Somehow I got the wee machine on my forehead. And I sank back into my pillow and into my level 9.
The migraine was carving out the inside of right frontal lobe… from the top of my forehead, my eye and upper right sinus. Carving… carving… carving. My stomach flipped with nausea, my body… after 10 hours of sleep… completely useless and everything in pain. The Cefaly now starts to ramp up. My eyes are closed and I focus on my breathing. In and out. In and out. In and out. Let the medicine and Cefaly work. Relax and maybe fall asleep.
The Angry Hunger eats away at my everything: my life, my brain, my soul, my sanity.
Let me paint a picture for you. I’m walking through the grocery store and surfing the shelves for the perfect pasta sauce. I bend down to grab the just-right jar of marinara. The fluorescent lighting of the store suddenly feels too bright and I cringe when the overhead speaker blares the daily deli special. I manage to hobble through the rest of the aisles and drive home, but I’m instantly horizontal the moment I walk through the door. I’m now at the peak of what will end up being a 72-hour migraine attack. I have to call off work, cancel a doctor’s appointment and let my family fend for themselves at dinnertime. (I’ll spare you the details of that scary scene.)
The reality of a life with chronic migraine means dealing with unpredictability. I’m never sure how to plan and often feel like I’m sacrificing my routine for the sake of what might happen. It’s exhausting, especially since I’ve been living with chronic attacks for 17 years. But over the past decade, I’ve come to realize that I am given just one shot at life. It’s not the life I would’ve chosen for myself per se, but it’s the one I have and I’m growing more grateful to be here — alive and able. I’m doing the best I can and I would wager you are, too.
This reframing of my mindset didn’t happen overnight, and there are still a significant number of days where I can barely open my eyes to embrace the present. But I suppose that’s the true beauty of balance when you live with migraine — it’s not guaranteed but it’s possible to cultivate over a period of time. I still don’t have total control over my migraine, but I do have control over what my treatment plan looks like. I have to sometimes sacrifice productivity for rest, but the pendulum will eventually swing back in my favor.
My advice to you is this: trust the people on your medical team, advocate for yourself in moments of uncertainty and try to give yourself a break when your symptoms consumes you like the tide. Keep going, friend!
Our first pregnancy was perfectly planned. I had prepared for months: charting my exceptional, well-rounded diet, avoiding alcohol, taking folic acid and prenatal vitamins – optimal health, perfect weight, excellent exercise regimen, charting my cycle with temperature and cervical fluid. We got pregnant on the first try month. I cannot describe the bliss and joy and fear and excitement and planning! Within hours of seeing the second blue stripe on the pee stick test, I behaved like most excited mamas-to-be: I was considering names, contemplating the cost of eyeglasses our kids would need and colleges they might attend. I sighed at board books and pacifiers, cute booties and beanies. I started browsing Babies-R-Us and I purchased pregnancy magazines and What to Expect when you’re Expecting – the paperback book AND the companion organizer.
Reading the organizer now brings everything back. I’m right back to 24 years old, married 3 years, embarking on parenthood, feeling the awesome reverence and newness of a growing life inside me.
The last six weekly entries are where it all fell apart. I found myself in another town, in an unfamiliar hospital, losing my baby as I bled in an ER. My mom was there… she would tell me later that her heart fell as she noticed my Pregnancy Organizer showing out the top of my purse on the floor next to my ER litter.
Week Number 6:
3/8 Major fatigue, dizzy spells, cramping in lower abdomen 3/9 Eggwhite cervical fluid
3/13 Told the family! Couldn’t wait! Spent the night giggling on the phone – has definitely made it very real! One spot of nausea at 1 am last night.
Week Number 7:
3/16 Small spot tan-brown. Very worried. Deep breast soreness. Major fatigue.
3/17 Very small tan-brown spot.
3/18 Small tan spot – called doc. Major gas cramping.
3/19 Some dark yellow discoloration
3/20 Definitely queasy. Spots of dark yellow discoloration.
Week Number 8:
3/22 No further discoloration. Have a pot belly and thicker waist, flatulence, fatigue, queasiness accompanied with belly aching. Backache and want to get out of my body – very emotional.
3/26 Appt with Dr Scannel! First visit – no FHT (fetal heart tones) audible yet. Uterus enlarged. Should hear FHT next visit! Some feelings of faintness yesterday AM.
Week Number 9:
3/30 Easter! Waist very thick with pot belly – am I gaining too much weight too fast? No clothes fit. Breasts sore, large, full. Energy at times, very tired at times – need rest, not necessarily sleep. Backache, hate car trips, queasy at times, fruit and chocolate cravings. Acne and weird hairs.
Week Number 10:
4/6 Very thick waist, huge hard pot belly – am gaining too fast! Can’t stop with the sweets and chocolate (my poor little one suffers!) No prolonged queasiness – episodes brief and sporadic. Deep soreness in breasts, stubborn face and body acne. Don’t feel tired – just fat!
4/7 So emotional – so upset! Am I crazy?
4/8 & 4/9 Small light brown spot in panties.
4/10 Slow leaking dark brown with menstrual cramps (am in Arizona with Marc as he is interviewing with a new job and I am scared to death)
Week Number 11:
4/12 Leaking dark brown discharge continues with tiny clots accompanied by low pressure and achiness. Blood discharge started approximately 1:30 pm. Went to Tucson Medical Center ER – heavy bleeding and clotting accompanied by pressure. We waited 3 hours before a doctor finally examined me. Physical exam revealed enlarged uterus and closed cervix. Vaginal ultrasound revealed no fetus, only enlarged uterus, blood and tissue. Delayed plane flight back to Massachusetts and D&C recommended.
And just like that – my world ended. I remember one ER nurse offering condolences. The first show of sympathy that fateful day – it touched me deeply. And the OB on call who saw me and did my D&C the following day was very, very considerate, empathetic, and kind as well. The rest of the staff were crass and apathetic. I cried in the shower at the hotel after the ER, blood still leaking from me. My tears mixing with the shower water falling on my head. I tried to cry quietly, but I’m sure my husband and parents could hear my sobbing outside the bathroom. My baby was gone. I was empty. Why was this happening to me?I had done everything, EVERYTHING right… and still my body had betrayed me. I was suddenly learning the horrible lesson about just how little control we mortals have – even over our own bodies. Our control is an illusion. But why was this happening to me? I was 24 and despite doing everything “right,” my pregnancy had failed… and there was definitely a loud voice inside me that worried incessantly: Would I never have a baby? Was I unable to have children? Had I done something to cause this? Was I being punished?
The following morning was the surgery: an outpatient D&C. My parents waited with Marc in the family waiting area. He admitted to my mother that he secretly hoped the doctor would find a baby still in my uterus when they went inside me. She held him and he cried.
There are so many, many tears. More tears than you can imagine. And they keep coming, even when you think there cannot possibly be more. And then more than that. Oceans and oceans of tears.
Marc was my Rock. But I realized soon how a father must get forgotten with a woman’s miscarriage – his grief isn’t recognized as much as hers. Marc faced a terrible thing: there was so much blood and he had to face a bargain with God: please save my wife. I realize I have to forfeit our precious new baby, but please, I cannot lose my wife too. The powerlessness and pain a father must process is immense. And later, we made sure to honor his grief and pain as much as mine. I make sure not to forget Fathers.
Our miscarriage was the first real tragedy we faced together. Our lives forever changed. We boarded the plane back to Massachusetts the next day. I held my body tight together with my arms as I was still sore and recovering from the D&C. I watched the ground outside the airplane window during takeoff. I watched the beautiful brown and green mountains of Tucson and it’s small short buildings grow smaller out the window. And I was hollow… I was leaving my baby behind.
I went back to work after recovering. I was surprised by my unstable emotions (normally, pregnancy hormones do not stabilize for approximately 2 weeks after the D&C, and you don’t feel normal until they do) – one moment I was powerful and in control, the next, I was running to the bathroom, broken and weeping. Overall, I was entirely full of shame – I felt like people were judging me – like they thought I was a liar since I had no evidence of the baby I’d lost. I was so vulnerable and so embarrassed. Honestly, these are normal feelings after miscarriage. Very soon so many of my coworkers approached me with their stories. So. Many. Stories.
I had a molar pregnancy before my daughter was born.
I had 2 miscarriages in between my first and second son.
I just had a miscarriage a few months ago. The doctor told me it was normal, but I still don’t understand – why was it happening to me? You know what I mean? After all, I have 2 children. But of course that doesn’t make it any easier.
And I was struck dumb. All these women. All these stories! Why didn’t anyone talk about it… until after the tragedy? This overwhelming aloneness and horrible grief and loss… I wasn’t the only one. It seemed to be an experience of so many, many women! Even my own mother, between my brother and my births, had had a miscarriage at 6 weeks.
These stories compelled me. My miscarriage compelled me. I would collect these stories in my heart and add them to my own. I would learn all I could about MISCARRIAGE. I would understand it.I would find purpose for my pain as I grieved and researched. And ultimately, I would endeavor to help, listen to, share, and advocate for other women who would also face this life changing loss. I would make sure they would know they were not alone and they were allowed to mourn their very real loss – for as long as they needed. They were not alone. And women, our society, and culture needed to tell our stories. This was my purpose for my miscarriage, I was sure. I could help others.
I vowed to TALK about pregnancy loss. We don’t talk enough about it… it’s common and it’s so painful. And you are NOT alone.
Some people said terrible things to me:
Did they figure out what was wrong with you – why it happened? What you did wrong?
You won’t come to my baby shower? I really want you there! I don’t care if you’ll cry the whole time.
(That one was just 2 weeks after my loss.)
You’re still upset about it? It was a miscarriage! No big deal. You should be moving on.
(That comment came a month after my loss.)
I wanted to help other women. I wanted to learn the right things to say. – to help them mourn, to acknowledge their pain and grief, to help them heal. This was a very helpful model to follow:
* * *
The company Marc had interviewed for was devastated for us when they heard the news. They actually had already planned to offer Marc the job in Tucson! And it was a bold move to leave the East Coast, but such a great opportunity. And we accepted.
In June we left Massachusetts and drove across the country to start a new chapter of our lives in the Southwest. We bought our new home in July and moved in. And I was pregnant again in August. But, remember, we were forever changed. The naivety and pure joy of pregnancy was forever gone. Instead of announcing: We’re PREGNANT! I would say: The test is positive! But I’m only # weeks and a miscarriage could happen again.
I ended up working at TMC – the very hospital in Tucson that had taken care of me during the miscarriage. My job was as an RN on the Mother-Baby unit.. I found the most AMAZING freestanding Birth & Women’s Center coupled with TMC, where I could safely deliver in a bedroom with a bathtub and assisted by a Nurse Midwife.
April came. My parents arrived with plenty of time for our baby’s birth. I was due 4/26/98. But I went into labor on 4/13 – exactly a year from the date of my miscarriage D&C. I delivered my first beautiful baby Ken on 4/15 after 38 glorious hours of labor and 40 minutes of pushing. My parents and husband were all with me in the French Colonial room with the 4 poster bed. My midwife had me reach down and grab hold of my baby and bring him to my chest. I held him close in my arms. He was warm and active and crying and soft and absolutely perfect.
Just a year before, my world was over. And now my world changed forever again. My journey of Motherhood began.
* * *
There is Motherhood after Miscarriage. Talking about pregnancy loss more could make it less taboo. Ignorning it only leaves women to that place of aloness – when there is an entire sisterhood of support available. We don’t honor the loss enough. It makes many people (mostly those who haven’t experienced it) uncomfortable, even though it is incredibly common. It is a real loss, requiring bona fide gieving and mourning and honor and space. And you are NOT alone. It’s not a fun club to belong to. It absolutely sucks. And after your loss, you’ll find yourself bumping into pregnant bellies everywhere, as if the universe is intentionally mocking your miscarriage. But the network of sisterhood is vast. It has been 23 years since my miscarriage. Every Christmas, my husband and I place an ornament on our Christmas tree honoring the baby we never held… a little teddy bear with wings. We went on to have FOUR beautiful babies between 1998 and 2003, until we felt our family was finished. All our children know the story about the baby we lost. I never had another miscarriage, although I was always ready for the next one that didn’t come. Marc and I have healed, although our lives bare the mark of miscarriage’s impact. We’ve gone on to face other tragedies together… and oh so MANY blessings!
I keep this artwork in my home; the image is particularly powerful for me:
“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.”
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.
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.
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🙂
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.
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.
* * * * * *
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.😊