Hi! Realized I haven't updated in a while. My ns checked via upright MRI for CCI-luckily I don't have it! We are all still puzzled about my neck pain, as that has been worsening. On vacation we hit a deer, luckily everyone is ok, my neck just got jerked around a lot and hurt more. So we went to the ER just to make sure everything was ok and luckily it was!
This is a picture of a quilt top that I have finished! I got it quilted and all I need to do now is the binding!
So starting tomorrow I'm going to do a pain management program recommended by my doctor. It will help teach me how to cope with the mental side of pain and build up my endurance. I will post updates from that but we will have to wait and see how tired I am after the day is done (it goes from 8-4:30!) #chiarimalformation #chiari #chiaristrong #chiarisucks #brainsurgery #occipitalneuralgia #painmanagement #painmanagementprogram #chronicillness #chronicallyill #chronicallyillteen
I recently found out I have degenerative disc disease and cervical spondylosis. Unfortunately, there is no cure for degenerative disc disease, it is typically a journey to learn to live with life long chronic pain. It is a lot to share but I wanted too. I wanted to also thank my family, friends and my rock, Sara for believing in me, being there for me and understanding that this is real and unfortunate but a manifestation of EDS. I feel lucky to have been diagnosed so that I can try to work on decreasing my pain. I am going to be meeting with Dr. Bolognese in NYC to go over my MRIs and have a third opinion for surgeries/surgery. They are ruling out Chiari Malformation and CSF leak once and for all. Dr. Bolognese is a renowned neurosurgeon specializing in Chiari Malformation and other brain and spine diseases. I am lucky enough to be able to have a Skype interview with him to go over my scans and get a confirmed, 3rd opinion from the best Doc on the east coast. He also specializes in EDS. I just wanted to say that if you know someone with chronic pain, be there for them, to talk and cry to, be there to listen, tell them you love them, encourage them, have mercy on them. You have no idea how much it helps. No idea. This past year has been one of the hardest in my life, hoping this coming year allows me to become more comfortable and tolerate my pain so I can try to live my life the best I can. Don’t give up hope, be your own best advocate, surround yourself with people who love and support you, and love your self no matter what. #chronicpain #warrior #family #friends #love #support #help #eds #degenerativediscdisease #chronicmigraine #occipitalneuralgia #cervicalfacetsyndrome #cervicalspondylosis #osteoporosis #27yearsold #chronicinflammation #beyourownadvocate #dontgiveuphope #loveyourself #connectivetissuedisorder
Most people think migraines are just a “bad headache”, but it really is so much more than that!!This graphic lists some of the other symptoms of chronic migraine. 🤕 Most days I struggle with around 14 of the symptoms listed on this graphic. Thankfully nausea and vomiting is not one of my typical daily symptoms! When it is all bets are off and I am in bed for the day. I share this to bring awareness for myself and other migraine sufferers (not for you to feel sorry for us.) So many people suffer from migraines and each migraineur is different with what treatments help or aggravate their symptoms. This is a complicated disease that not even the top neurologists fully understand. #prayforacure #notjustaheadache #chronicmigraine #migraineawareness #chronicpain #occipitalneuralgia #icandoallthingsthroughchrist
I always get a sore neck with my migraines. The neck starts hurting before my head does, so at first I assumed that my neck pain was causing migraines.
I used to work in an office job sitting at a computer all day, and I thought that I had neck problems caused by my posture and computer use. I did an ergonomic assessment, bought an expensive new chair, saw a physio and did neck exercises and stretches daily. I even downloaded a computer program that forced me to take breaks every 20 minutes to look around, stretch etc.
Nothing seemed to help. As a migraine progresses, the neck pain gets progressively worse. Eventually, I concluded that the neck pain is part of a migraine rather than the cause of it.
However, I get pain around the region of my greater occipital nerve... And if the nerve is pinched or inflamed by tight muscles, that can contribute to migraine involving the greater occipital nerve. It's a viscous cycle, and there are so many possible factors contributing to what's going on in my head!!!!!
First full week back at work in two months. I’m not smiling because it hurts my nerves, but hey I’m alive and vertical! It’s the little things in life and if I’ve missed your attempts to contact me, I apologize. Somethings are too much when a flare up occurs. I will always love you all my friends. #trigeminalneuralgia #occipitalneuralgia #POTS
I wanted to take a minute to talk about a serious and perhaps uncomfortable topic. The opioid crisis. Far too many people are dying of overdoses. Many, many of these deaths are preventable. This is a naloxone kit. It is available for free in pharmacies across Ontario. And in the case of an opioid overdose, it could save a life. I think everyone should carry one. “But I don’t use hard street drugs!” You say. Doesn’t matter. I, for example, take a mild opioid painkiller when my occipital neuralgia headaches or hypermobility spectrum disorder body pain are really severe. I use it sparingly and take it as directed. But what if, god forbid, one of the kids I hang out with or teach somehow gets into the meds I carry? I’d never forgive myself if I wasn’t carrying naloxone. And I live in an urban area. What if someone on the street is suffering an overdose and needs help? What if a friend or family member overdoses on prescription medication or street drugs? It’s the kind of thing you hope to never use, but it’s important to have. Because real people, good people take prescription opioids. Real people, good people take street drugs. So get your naloxone, get trained, and keep it on you. #opioidepidemic #opioidcrisis #naloxone #opiodcrisis #narcan #occipitalneuralgia #hypermobilityspectrumdisorder
O QUE É BLOQUEIO DO NERVO OCCIPITAL?
- Trata-se da injeção de um anestésico (em geral, lidocaína), através de infiltração, próximo ao(s) nervo(s) occipital(is), que se localiza um de cada lado do couro cabeludo, originando-se no pescoço;
- Existem o Nervo Occipital Maior e o Nervo Occipital Menor. Nenhum deles possui função motora, apenas sensorial, mas ambos podem causar dor;
- O bloqueio é indicado nos seguintes casos:
⚬ Neuralgia Occipital, que segundo estudos, tem relação com a Fibromialgia;
⚬ Cefaleias Cervicogênicas;
- O objetivo é diagnóstico e terapêutico e o tratamento, ambulatorial; 🌟Ontem, após dar entrada pelo segundo dia no PS com crise de enxaqueca, o médico que me atendeu me sugeriu o procedimento. Topei na hora. Estava com tanta dor que nem parei pra pensar nos possíveis riscos ou sentir medo. Além disso, ele me transmitiu muita confiança e garantiu que eu ficaria no mínimo de 7 a 10 dias sem dor, o que, no meu caso, é um verdadeiro milagre.
E vocês? Conhecem o bloqueio do nervo occipital? Alguém já fez? O que achou?
#bloqueiodonervooccipital #enxaqueca #tratamentoambulatorial #neuralgiaoccipital #infiltração #lidocaína #doencacronica #dorcronica #doençainvisível #fadigacrônica #fibromialgia #vivendocomdor #occipitalnerveblock #migraine #infiltration #occipitalneuralgia #lidocaine #chronicillness #chronicpain #chronicfatigue #invisibleillness #fibromyalgia #spoonie
With the launch of our new program yesterday I have ALL the feels. Call me silly but I seriously feel like I’ve been tearful about it non stop. 🤭🤷🏼♀️ 6 months ago I let fear and chronic pain run my life. I went through the day afraid of my next flare. I honestly wasn’t truly living at all, I was stuck. Stuck in between wanting a serious change but to afraid to do anything about it.
With the support and constant encouragement from my friend and now coach who KNEW there was more to my story I was able to put fear aside and slowly launch myself into a totally new life.
But trust me when I say nothing happened over night, it has been a process, and don’t get me wrong there have been painful days and a few flares here and there but I am still doing it. I put fear aside, I changed from negative self talk to positive affirmations daily, I surround myself with a uplifting community on a regular basis and day by day I got stronger.
Today I am SO happy to report I am a NEW me! I am no longer afraid. I no longer let fear run my life. And for the first time EVER I am able to participate in a program launch a long side of my team. Something I always let fear hold me back from!
So I challenge you to push yourself outside of your comfort zone and if you are afraid let’s chat, I have ALL the tools and then some to help you throw fear aside and become a new you too! 🙌🏻#coachlifeisthebestlife #chronicpainwarrior #chronicpainfitness #chronicpainsurvivor #occipitalneuralgia #chronicheadpain #fitnurse #pilotwifelifestyle #pilotwife
Who is ready to chat about EMOTIONS?! 🤯😨😏😃😡🤪
Emotions can be difficult and even scary. It is so much easier to suppress emotions than to recognize, feel, and process them. However, the ability to recognize, feel, process, and release emotions will enable you to function in a more positive and successful state so you can live free to create the life you desire.
~ 😊Join me TONIGHT, free on FB anytime from 5pm-midnight PST, to learn more about emotions. This information will transform your day to day life and give you the tools you need to process emotions in a healthy and effective way. These tools can be used for all ages and are very effective. (Ahheemmm, think kids and spouses too😉).
NO pills necessary. 🛑.
Invite YO friends and foe's and spread the word bird.🦅 (If ya do, I may send ya a little something💎).
~ “Your intellect may be confused, but your emotions will never lie to you.” Roger Ebert.
Link in bio👆👆
NOT ON FB?? NO PROBLEM! SEND ME YOUR EMAIL ADDRESS AND I’LL SEND IT THAT WAY✅✅✅
#emotions #essentialoils #learn #forgive #innerchild #release #harmony #presenttime #valor #feelings #joinme #facebook #healthwarriordoc #wellness #healthyliving #momlife #migraine #occipitalneuralgia
Current Mood. 😴 Repost @brooklynnebarb23
with the amazing Frenchie I just wanna crawl into bed with and cuddle for days. 💜
Life update (if that's not your cup of tea then peep this throwback back and white look and have a good day🖤):
I went to a new neurologist appt today (well new. .old since I saw this guy 4 yrs ago and was too hesitant to do the treatment he was offering at the time which was prophylactic migraine meds that were in the class of anti seizure meds). If you'll remember, I had decided to embark on this journey this spring after realizing that what I thought were constant sinus infections were just continuous migraines since my allergy panels came back totally clean. I decided to try again and see if I couldn't improve my quality of life.
Today has me a bit anxious and freaked out and fearful. The issue when you talk about about going to see specialists and try treatments is that you always worry in the back of your mind that something else is gonna go wrong or that the doctors won't believe your suffering or any myriad of fears that your mind can latch onto.
So I guess the appt went fine. He read all my old info, updated what else I've been diagnosed with and have taken, and immediately honed in on 2 things. I guess when you've tried so many things to no avail that you kind of go to the last resorts, or at least some less run of the mill ones. I am now working on becoming a patient to try Aimovig. You may have read about this in the news; it is a brand new type of once a month injectable migraine drug that does a bunch of sciencey stuff that you are better off googling then me explaining. It is brand new so this will take some time to receive.
He also wants me to try nerve blocks for what he has diagnosed as occipital neuralgia (again, google). That scares me to imagine needles put in the base of my skull, but there is little risk and if it works it opens up alot of possibilities.
A ton of stuff to think about. I'm scared honestly. Scared to lose the little I have left of life that's tolerable with my vertigo and constant migraines. Hope is in the distance..I'm not quite there yet. I don't know if I can let myself get there.
But I can say I tried..or am going to try. That's gotta count for something.
Thoughts are welcome below! 🖤
I’m celebrating a #milestone
today! I am finally able to cook again without serious pain! Over the last two weeks I’ve done a few extras and I’m seriously so happy about the little things! Hopefully, I’ll mend a little every day until I’m able to do more. It’s so hard because I’m an all or nothing kind of person. I want to jump in with both feet but I’m learning to pace myself. I’ve been looking at deadlines which really stresses me out, however, I must believe that something better is waiting! #chronicpainwarrior #chronicpain #occipitalneuralgia