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
Thank you #cefaly #cefalyus for being the only #migrainedevice that helps me combat #ChronicMigraine Drug-free, money back guarantee, now available in US without prescription… once you purchase your Cefaly, it’s yours to use as frequently as you need with no further expense (excluding electrodes) or prescription required. Cefaly offers an intense counter electrical stimulation that combats #migraine pain and symptoms. It is compact, rechargeable and travel-friendly. While resting is the best during Cefaly cycle for me, you can also do minor tasks… like laundry. Not for use while driving a car. Then again, I cannot drive a car (safely) during a migraine attack either. #chronicmigraineawareness #migraineart #speakyourmigraine #patientsnotaddicts #migrainedevice
Chronic Migraine … is an ocean you can’t swim out of. It is dark, unfamiliar room where you stumble over unknown objects and trip with arms outstretched – you can’t find the walls – and certainly not the door that leads you out. Is there even a door out in this dark room?
Chronic migraine … is the nightmare you cannot wake up from. It’s so long and real, you forget you’re dreaming.
The brief reprieve moments from symptoms are fleeting and often tainted by Chronic Migraine – like watching a beautiful sunrise through a filthy window and from beneath a dark veil over your face.
Chronic Migraine … invites itself in to your body – to your life and moves into the command center. It becomes a part of your whole body, your whole life, your loved one’s lives – dark and sinister – like mold spreading, like disease metastisizing.
Looking in the mirror … there are parts of me I can recognize … I can feel me when I laugh and when I’m having a rare moment of disease reprieve. I’m in this body somewhere … behind the dark under-eye circles, beneath the extra pounds, beneath the crap joints and the dark thoughts, relentless pain, and short temper. I can lay in a bed all day and not feel the least bit rested – just utterly exhausted. That amazes me everytime. I’m sooo bloody TIRED! Someone turn OFF the Tired, PLEASE!
Chronic Migraine … cannot erase me completely … although it seems that is its goal.
I push one bone-weary foot in front of the other. I’m skilled at log-rolling out of bed. I can identify medications with my eyes closed and in the dark by shaking the bottles – that one is a capsule, that one is a tiny pill. Like an athlete trains for their best physical performance, I know how to reserve and conserve my energy – for days – in order to accomplish the most basic life tasks.
I am a Chronic Migraine Jedi. Many years I have trained. The Force is with me and I am one with the Force.
Viruses spread by many different routes including direct contact, indirect contact (from phone/surface to face), droplet, and aerosol (very low percentage). They spread from many different sources including GI emissions such as diarrhea. Not just from breath or talking. Never before have I seen such irresponsible politics in public health. UCSF “scientists/medical providers discussing the Rose Garden transmission event stated “gregarious people who talk a lot are super spreaders” So shut up and put the mask on. Don’t question!
They say we are in trouble because this “new” virus spreads asymptomatically! They say a mask is protective for this and say schools and businesses need to limit capacity and that I can’t bag my own groceries (so now I have two hands touching my groceries (I really don’t care about the extra hands but think about it) and people to deal with as they call a bagger over for my safety) Idiots!
They say an influenza vaccine (I take and will take the covid vaccine) is the best way to reach heard immunity and protect society each season even though as attached the majority of influenza is “asymptomatic”. If you already had the flu ever, there is a good chance you would not get it again for a very long time as when you study repeated vaccination, the antibody titers return to pre-vaccinated status that was the original natural defense. Masks in communities are not effective at controlling spread of influenza in years past.
The flu disappeared this year with only 17 cases counted out of 17000 in week 48 of our great year 2020. reference attached! Likely lies though since it is often asymptomatic. They only check for covid at the drive through or before elective surgeries.
How does one virus that is asymptomatic in many people like flu disappear but the SARS-COV2 covid virus continues to burn wild?
I have seen many viruses kill people while working in the ICU and doing ER medicine in years past 1996-2005. I have intubated many virally-infected critically ill patients that you see in the news today. The patients did all the “mysterious” things the news presents to you now 20 years ago. The ICUs are always over-crowded during winter.
As an immunologist, I would rather be vaccinated as this will better protect me, my family, and my patients from other routes of infection such as placing it in the eye, nose, or mouth. A mask will not do this, but Dr. Redfield is an imbecile spilling lies just as Dr. Fauci is a lying, politician. I hope Dr. Fauci chokes on his vit d, zinc, and Rigitoni!!
What we have here is a misrepresentation of public health that was constructed for some other purpose be it sabotage of the president( Don’t care about that) or creating a “new normal” that puts small business and education in the toilet. I really don’t know.
So sorry for the mixed messages you have received! So sorry you fear your friends, family, and neighbors more than you should!! ( I know most of you don’t fear your friends or family)
Just as the Japanese convinced their population they needed to dominate and destroy others with their propaganda, the Germans taught their citizens to hate others through “eugenic” science. This pseudo-science, infodemic, pettifogging bullshit to convince you to not gather during the holidays is harmful as many actions this year have been.
Fauci just warned about Christmas gatherings even though they could conduct a mask trial to see if it helps (already done in Denmark with no help because of low transmission at the time). So many opportunities to conduct prospective masking studies more than one year later. Why haven’t they been done?
Why would the CDC director claim a mask may be better than a vaccine a few months ago? Politics with the climate about Trump stating the vaccines would be out by election. I don’t care about who is president as my chant is not “lock her up” “build the wall” or “build back better”.
My chant is “stay healthy” and love your friends and family this holiday season! There is always risk getting together despite what the news and gov’t agencies tell you! It is low as in years past.
Vaccines are modern medicine’s greatest triumph and understanding the risks and benefits, I encourage vaccine utilization realizing they are not perfect and some small fraction will have harm done to them by vaccine. To not vaccinate a population would cause more harm in the long-run.
To believe this vaccine was rushed is also a misrepresentation again as the s-spike protein is a well-recognized foreign structure to the human immune system for thousands of years. Its ancestor was about 10000 years ago and coronas are natural viruses. In fact, most people who come across a low dose of s spike protein get “vaccinated” which is why there are asymptomatic cases. Soon there will be 100 strains of corona viruses just like rhinovirus and influenza that all efficiently kill the elderly.
At any time these bullshit artists in academia, politics ,and gov’t agencies can threaten you with misrepresentation of a real risk and destroy your family gatherings or your way of life.
TL:DR- CDC and NIH have been bullshitting you! Sorry about this.
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.