Cancer

Join the Conversation on
Cancer
183K people
0 stories
9K posts
About Cancer
Explore Our Newsletters
What's New in Cancer
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

What’s your experience with functional medicine?

As defined by the Institute for Functional Medicine, this approach to health is based in systems biology and focuses on identifying and addressing the root cause of disease — from inflammation to vitamin deficiencies. It takes into account one’s genes, environment, and lifestyle (including stress management, nutrition, and movement), but it also blends conventional medicine with more “traditional” or complementary practices and approaches.

In the most simplistic terms, functional medicine treats a patient as a whole person as opposed to dissecting one’s health organ by organ, symptom by symptom.

I’m about to see a functional medicine doctor for the first time after my rheumatologist “dismissed” me from her care after diagnosing me with lupus less than a year ago. (To be clear: I absolutely love her, but her hands are a bit “tied” when it comes to insurance approving the next tier of meds, and I have a dangerous history of medication side effects.)

And like many of you in this community, I’ve had a lot of triggering experiences across the spectrum of holistic practitioners (I once saw someone who wanted me to stop all of my medications cold turkey with absolutely no tapering plan). One of the biggest cons to seeing a functional medicine provider is cost, as it’s entirely out-of-pocket and not covered by my insurance. On the other hand, they’ve been incredibly thorough, validating, kind, and responsive. I still can’t get over the fact that when I call their office, they always answer and help me immediately. (No voicemail? No repeated attempts to communicate via the patient portal?) I’m cautiously hopeful that they’ll help me move in a better direction — I don’t have a ton to lose at this point.

I’d love to hear any tips, advice, or general experiences with functional medicine. What have you tried? What’s worked? What happened?

🤓 P.S. I have found this website to be super helpful when doing my research: www.ifm.org

#Spoonie #Lupus #Migraine #ChronicPain #ChronicIllness #RareDisease #CheckInWithMe #Fibromyalgia #AutoimmuneDisease #Undiagnosed #Caregiving #Cancer

The Institute for Functional Medicine

Information and educational seminars and conferences on functional medicine.
10 reactions 9 comments
Post

Monday mar 18

Meltdown. Panic due to work and medical.
Having cancer infusion tomorrow at 8am. Then 11:30 am PeT scan at another facility.

Reiceived a new duty at worK. It does not fit in with my work hours and Im back to workin over time at home, after hoirs an on weekends again

Im going to finis
AUgh. This update of the Mighty app. Has not fixed any thing. It stiil eats my postsh

Post

AGING WITH CHRONIC ILLNESS

So I turned the big 65. This is not a post to illicit birthday wishes. Please don’t think it is. It’s just a bit of a lamentation on how debilitating illness causes you to lose so much living. I’m posting it for educational purposes for any who care to read it. Chronic and invisible illness is everywhere. Someone you know and love may be affected now or unexpectedly in the future. It affects every aspect of the ill person’s life and that of caregiver’s. The poor caregiver seldom gets a break and little recognition of the burden they carry.

I don’t feel like I’ve even lived enough to get old. There’s such a big gap between being at my peak just before I got sick at 33 and then being old. It happened so hard and so fast. I felt young and in my prime one day and 80, frail, and beyond sick the next. I still can’t comprehend how I was functioning one day, albeit struggling, and the next I was just broken never to recover and never to even level out or improve much.

These are not my “Golden Years”. They are hard and harsh and have been ever since I succumbed to illness 32 years ago. I will not be doing things I’ve always wanted to do and going on new adventures or enjoying simple things like spending time with grandchildren because illness robbed me of children of my own and a spouse. In general, people don’t stick around when your world is reeling and you can no longer be who you are. Nor can you meet and develop new friendships in the throes of illness and living in isolation.

As much as the only thing I ever really wanted in life was a simple life of home and family, it’s just as well I didn’t have children that I couldn’t take care of or a man who wasn’t in it when the going got tough. Even just the basics in life that children require take a lot of energy and a lot of going and doing. I know because of the big hand I had in helping raise my nephews before I succumbed to illness when their mother wasn’t expected to live. Then my mother was my neices’ daycare and I helped with them necause I wanted to. I lived in a mobile home in my parents’ back yard.

My nieces came along 10 years after my youngest nephew. They were the loves of my life and probably saved my life. I had lost everything when my oldest niece was born 3 years after I got sick and I really had nothing to live for and didn’t want to live. I had absolutely no income for two years until I won my meager disability and would have been on the streets if my parents had not graciously and without question taken me in. My body just wouldn’t work and I could no longer dance. Being a dancer was my identity. I wan’t happy not working. I had worked at something since I was 10 years old. I felt like a failure and a freeloader despite my parents never acting like I was and taking care of me willingly.

My nieces loved me dearly as did my nephews. I still felt a lot of guilt because I couldn’t be the fun aunt to my nieces that I was to my nephews and take them places and do things with them. They never knew me any other way, though, and they were always so eager to toddle across the walkway to my trailer once I let them know I was up in the mornings. It was part of their daily routine with us. We did simple low energy things together like read story books, play their children’s songs, watch their favorite children’s shows, sit on the steps and play “I Spy”, walk around the property on the days I could and look at flowers, and their favorite activity, lying on a quilt cloud watching. So even though I haven’t been a natural mother, I’ve been a surrogate mother of five.

I know no one ever really lives the life they imagined. Unexpected things derail plans all the time. Life limiting illness is a whole other curveball, though. It’s a boulder or falling rock off the side of a mountain. It comes out of nowhere at warp speed. It crushes you and injures you just as a literal falling rock would. You struggle to understand, your literal life is in jeopardy, your spirit is crushed, and in time your will to survive is because you can’t come back from the injury. Life as you’ve known it is over. You are permanently disabled and will never be anywhere near your former and true self again.

Don’t think I just let this happen. I fought against it tooth and nail. Mostly to my own detriment and certainly to my own and my family’s emotional distress. I’m truly surprised I’m still living. Not just because of the emotional upheaval and desperate thoughts of the early years, but because of the multiple real life-threatening conditions I live with that can go bad in a moment, the constant assault on my body on a daily basis and new ones always developing, muscles that don’t work well including autonomic ones like breathing, lung cancer that was undiagnosed for three years and the tuberculosis type infection that I still deal with that likely caused the cancer. I really don’t know why this body doesn’t just give up. I get up and push through every day and try to find some motivation, purpose, and small joys, not necessarily because I’m a fighter and all that lofty stuff, but necause it’s survival.

I don’t look forward to waking up every single morning slammed with such lack of energy I feel like my body shut down during the night to survival state, often wracked with pain, seldom having slept much or well, often feeling so overwhelmed with it all I want to cry, but that’s physical and emotional energy I don’t have. Life is miserable and the days are so long and tedious when I can’t manage to do something no matter how minuscule it is so I prod myself out of bed, literally stumble to the kitchen because my legs don’t have the energy to work right yet, make my tea and a little sustenance and try not to be too disheartened for, at least, a couple hours until I get a little more functional. Then I try to do something useful.

Chronically ill, homebound, and bedridden people have the same needs as everyone else. They mostly go unmet because the onus is left on the sick to initiate social interaction and since we can’t go and do, we are mostly out of sight and out of mind. The sick are often left caring for the sick because so many conditions are multigenerational. It’s a lonely and isolated life. We didn’t chose it. Others just don’t see us. If you don’t understand that we have the same needs you would have if you were in our position, you simply don’t understand the basic human condition. We don’t have the energy to stand on our soapboxes and try to explain it. We wouldn’t anyway. We need more than thoughts and prayers. We need tangible action.

11 reactions 5 comments
Post
See full photo

4 of my bunny boys.

As requested, here are 4 of my rabbits. Cheeky, Hunny & Potato are brothers I bottle raised them from 2 days old, we think they’re Netherland dwarf crosses, they have another 2 brothers, who I’ll post later when I have decent pictures of them! The brothers are 3 & half years old. Boy is a rescue who was found in a hutch at the bottom of a garden after the people had moved out 😭 we think he’s about 8 or 9, rabbits are really difficult to age.
Hunny & Cheeky live together, Potato & Boy live together & Bubble & Pip Squeak live together (photo to follow).
The 5 brothers I named when they were tiny after their personalities (Hunny, Cheeky & Bubble), Pip Sqeak was & still is the smallest of the lot, & Potato, being the only white rabbit of 5 (the other 4 are black) looked like a pile of mashed potato in a bowl of gravy!
All my boys are neutered as 90% of unneutered rabbits get cancer (testicular or womb/ovarian) by the time they’re 8 years old!
Rabbits generally have a life span of 12 - 15 years & the intelligence of an average 3 - 4 year old child!
Their main diet is hay, I have 4 different types of it open, variety is big in life! They also get dried fruit leaves & twigs. They get fresh fruit & veg daily & occasionally dried fruit (to much added sugar to be regular). Of course they get their nuggets for the vitamins & minerals & they have fresh water in their bottles.
They’re a lot of work, run the house (the cats are scared of them!), need a lot of exercise & mental stimulation so they don’t get bored. But are totally worth it.

17 reactions 4 comments
Post
See full photo

Who could benefit from hearing your story?

We’re going back to our truest roots for this week’s self-care theme — storytelling.

Here on The Mighty, there are so many amazing people who share their experiences daily. We all benefit in different ways, resulting in a community for those who may share a diagnosis, have a similar experience, or can simply gain perspective through others’ vulnerability.

One thing we know for sure is that each of our stories are important and worth sharing (yes, yours too!), especially in those moments when we need support and a listening ear. When we share our stories, we not only build community, but we also let others know they are not alone.

Who could benefit from hearing yours?

#52SmallThings #CheerMeOn #CheckInWithMe #MentalHealth #Advocacy #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #Caregiving #Cancer #Grief #Trauma

41 reactions 14 comments
Post

Two Books That Really Made Me Think About Life and Mortality

We all have those books that hit us really hard—those books that make us think and have an impact on our lives. Here are two books that did so for me:

1.“The Honest Truth” by Dan Gemeinhart

In all the ways that matter, Mark is a “normal” kid. He's got a dog named Beau and a best friend, Jessie. He likes to take photos and write haiku poems in his notebook. He dreams of climbing a mountain one day. But in one important way, Mark is not like other kids at all. Mark is sick. The kind of sick that means hospitals. And treatments. The kind of sick some people never get better from. So Mark runs away. He leaves home with his camera, his notebook, his dog, and a plan to reach the top of Mount Rainier—even if it's the last thing he ever does. “The Honest Truth” is a rare and extraordinary novel about big questions, small moments, and the incredible journey of the human spirit.

2.“Side Effects May Vary” by Julie Murphy

For fans of John Green and Rainbow Rowell comes this powerful novel about a girl with cancer who creates a take-no-prisoners bucket list that sets off a war at school—only to discover she's gone into remission. When sixteen-year-old Alice is diagnosed with leukemia, she vows to spend her final months righting wrongs. So she convinces her best friend, Harvey, to help her with a crazy bucket list that's as much about revenge as it is about hope. But just when Alice's scores are settled, she goes into remission, and now she must face the consequences of all she's said and done. Contemporary realistic fiction readers who love romantic stories featuring strong heroines will find much to savor in this standout debut.

#themightyreaders #Cancer

1 reaction
Post
See full photo

Practice being comfortable being alone

I was speaking to a family member recently about how whenever she has time off she stresses about making plans with her family. Even on weekends, she felt like she was wasting them if she didn't fill it with activities. When I told her she was allowed to do nothing, it was as if a huge weight had been lifted. I told her I love how on weekends I can just do nothing other than be lazy and watch movies. I like to make plans too, of course. But sometimes a "staycation" is exactly what you need. Just because it's the weekend, doesn't mean you need to make wild plans. Is anyone out there going to be like me and spend their time at home in peace? And if so, what do you do to give yourself rest?

Also, I'm so grateful for all of you and would love to get to know you all better outside of The Mighty, so if you're on Instagram, feel free to reach out at:

www.instagram.com/thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

#MentalHealth #MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether

254 reactions 56 comments
Post
See full photo

I’m okay

So earlier this week, one of my breasts turn bright red with a rash, and I’m already a survivor of three crazy things that happened four years ago, including breast cancer. So I had three days of terror that I had the most aggressive form of inflammatory breast cancer. No sleep. Husband couldn’t sleep and I found this group. Made the appointment and went to see my doctor. I’m OK.

it’s just a rash. And then last night I woke up the night with gas pain, heartburn and pain in the chest cavity. Being an aortic dissection survivor, you can’t get more triggered than that kind pain. So I just laid there and felt gratitude that my breast is fine. My aorta is fine, but I need to acknowledge that these triggering episodes are real and they’re hard. #heart #Cancers #PTSD

(edited)
8 reactions 2 comments
Post
See full photo

I’m okay

So earlier this week, one of my breasts turn bright red with a rash, and I’m already a survivor of three crazy things that happened four years ago, including breast cancer. So I had three days of terror that I had the most aggressive form of inflammatory breast cancer. No sleep. Husband couldn’t sleep and I found this group. Made the appointment and went to see my doctor. I’m OK.

it’s just a rash. And then last night I woke up the night with gas pain, heartburn and pain in the chest cavity. Being an aortic dissection survivor, you can’t get more triggered than that kind pain. So I just laid there and felt gratitude that my breast is fine. My aorta is fine, but I need to acknowledge that these triggering episodes are real and they’re hard. #heart #Cancers #PTSD

(edited)
8 reactions 2 comments