EssentialTremors

Great article that talks about the importance of good bedside manner, doctors that listen, checking your insurance at the start of your search, asking good questions and do your homework of course! It has lots of good ideas especially at the end under “Finding a good fit”…like…

“…During that first visit, think about how the doctor and office staff make you feel, HHS advises. If the doctor doesn’t make you feel comfortable, show respect for what you have to say, know your medical history, and spend enough time with you, then they might not be the one for you.”

Castle Connolly Survey Asks What Patients Want Most From Their Doctors

#MentalHealth #Depression #Anxiety #Disability #PTSD #Selflove #Selfcare #ChronicIlless #ChronicPain #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #COVID19 #Migraine #Headache #PeripheralNeuropathy #Concussion #BrainFog #ParkinsonsDisease #balance #EssentialTremors #Memory #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #ADHD #RareDisease #ChronicFatigue #IfYouFeelHopeless #Hope #Faith #FuriouslyHappy #Belief #Love #help #GettingHelp #InsideTheMighty #TheMighty #MightyTogether #DistractMe

This question was posed someplace else on The Mighty and got great answers with insight, reflection and many coming from a place of wanting or needing. I started saying I would want a great healthy and durable body and stable mental health ….but read somebody else’s response and realized if I had magic powers I could make myself cured of my mental health challenges and grant myself a great new body and then do even more… I got to thinking of what else I could do with magic powers…and thought big like I could eradicate all suffering and diseases and create empty hospitals and bored doctors and of course …World Peace and no war and all people would get along and respect each other… but then thought small like I myself would have no financial worries and with my stable health have a great job I can flourish in with my healthy body and mind…and be able to make more of a difference in the world.

What would you do with magic powers? Or what else would you like to have (think big!)

#MentalHealth #Depression #Anxiety #Disability #PTSD #Selflove #Selfcare #ChronicPain #ChronicIllness #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #RareDisease #COVID19 #Migraine #HIVAIDS #longtermsurvivor #Fibromyalgia #IfYouFeelHopeless #Hope #DistractMe #TheMighty #MightyMinute #MightyTogether #mentalhealthwarrior #Addiction #AddictionRecovery #Cancer #ParkinsonsDisease #EssentialTremors

Ever gotten something you wanted, and it didn't give you the happiness you were expecting? Or you got something you didn't want, and you loved it? We assume we know what is good for us but life has a way of surprising us all the time. Does anyone have a story where this sort of unexpected result happened?

#MentalHealth #Depression #Anxiety #PTSD #Disability #ChronicIllness #ChronicPain #Selfcare #Selflove #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #RareDisease #COVID19 #Migraine #Headache #HIVAIDS #longtermsurvivor #Neuropathy #PeripheralNeuropathy #BackPain #EssentialTremors #Bronchitis #Pneumonia #CPTSD #Addiction #AddictionRecovery #Fibromyalgia #Cancer #Diabetes #Chronicpainwarrior #MentalHealthHero #Stigma #Grief #LossOfAParent #IfYouFeelHopeless #Hope #thankful #grateful #relief #Happiness #Acceptance #PainAcceptance #strength #CheckInWithMe #TheMighty #MightyTogether #MightyMinute

At 56 I'm a young nana. My 3 children have blessed me with 12 grandchildren ranging from 18 years to 7 months. Rewind to August 2010, I was like any other average grandmother. Going to their events, parks, playing ball, board games, video games, sing-a-longs, strawberry picking, horse back rides, etc. In January 2010 my health started to change. In 7 months I lost my job, my relatively normal health and my independence.

Fast forward to 2022 I have 10 verified diagnosis' and level 3-4 pain 24/7. Everything takes more energy than I have. I still make sure I attend all birthday parties, Christmas and as many other events as possible. It's now too difficult for me to take all of each family's children at the same time. I'm currently spending a few days with each child before school starts with the exception of the youngest 3. I have 3 kids to go in the next 2 weeks. I don't want any of them to see how difficult spending time like this is on me. I literally sleep 1 or 2 days after they go home. I don't cook for myself daily and even just getting 3 meals a day for them is debilitating. I pray they never know what it costs me.

I am so thankful for this time no matter what my personal cost is. I'm very close to my children and I know that even after my memory or I am gone that they will keep my memory alive. God has blessed me and I am so very grateful for them all.

Thank you for reading! I hope you find something every day to be grateful for. Every breath is a gift if you believe it or not. 🙏🫂
#RareDisease #MyotoniaCongenita #Fibromyalgia #Depression #Paresthesia #Neuropathy #formication #Ocularmigraine #EssentialTremors #SleepApnea #DegenerativeDiscDisease

"When he told you you're not worthy
When he told you you're not loved
When he told you you're not beautiful
That you'll never be enough
Fear, he is a liar
He will take your breath
Stop you in your steps
Fear he is a liar
He will rob your rest
Steal your happiness
Cast your fear in the fire
'Cause fear he is a liar"

I was listening to my iPod last night with my mind wandering until this song came on. It fits so many of us with fear, doubt, questions about are we sick enough or need to get out of a bad situation. Look the song up and listen to the lyrics and not worry about the genre. #Fibromyalgia #RareDisease #MyotoniaCongenita #Neuropathy #EssentialTremors #Osteoarthritis #Paresthesia

I'm curious. When I want to lend support or answer a question I have to join that members group to do so. Is there a way to comment without joining that particular group? There are groups that I'm in now for conditions that I don't have. I don't want to misrepresent myself. Is there a different way to post that I don't know about? Thank you for your time in advance! 🌞 #Fibromyalgia #MyotoniaCongenita #EssentialTremors #Neuropathy #formication #Ocularmigraine #Depression #Paresthesia #Osteoarthritis

I have several well-known diagnosis' and one rare, myotonia congenita. I believe that my brother has myotonia congenita also but refuses to get genetic tests. We share some of the symptoms.

Some of the more common diagnosis' we do not share. When I try to explain how debilitating fibromyalgia, essential tremors and osteoarthritis are for me. He, as usual, says he has pain too but has no choice but suck it up and push through it. I can't seem to convince him that our pain levels or types can vary wildly. I'm not sure what to say to him at this point.

He and I are in a position now where our parents are requiring more at home care. Each have different stages of dementia. This is a delicate matter for the four of us. So I need to do my part in their care. Especially our mother who struggles if I'm not with her several times a week. During the current discussion between my brother and I he told me that he needs me to step up more. He thinks I don't know that?! I feel guilty enough for not doing what I think is enough.

Our parents live in his basement apartment and I live 10 minutes away. He now has a lake house as well. He wants to pick up and go whenever he wants without notifying me until the night before. Which means I have to pick up the slack so to speak. I wish it was easy for me to just get ready and leave my house. We all know that it's not that easy or simple. My parents have a spare bedroom but he and his wife don't want me to live with our parents. Just come over 3-4 times a week for a few hours he says. I struggle showering or even cooking for myself daily. I'm at a position where I need extra care myself. But I'm at a loss at what more I can say to him. It's a no win situation for all of us. Thank you so much for listening to me vent. Have a great day! 🙏 #Fibromyalgia #Depression #Paresthesia #Neuropathy #formication #MyotoniaCongenita #EssentialTremors #RareDisease #Osteoarthritis

I finally saw my muscular geneticist at John's Hopkins Hospital in Baltimore today. My muscle strength and reflexes have to be guaged. Pushing and pulling on my limbs and feet. I have been struggling for over a month with this fibro flare and today increased it exponentially! I'm not sure what the instrument is called but I call it a hammer. I know that after it's used, if I'm not already in a flare, I will be afterwards. Because of my balance issues the doctor wanted her PT to examine me. Guess what she did?! She did exactly the same push, pull, hammer stuff my doctor did plus a few other tortures lol. It's a 4 hour round trip car ride and my appointment was 3 hours. I'm beyond exhausted. I'm sure this happens to a lot of you and I am not alone. It's a music and pain meds night at the very least.

It's therapeutic for me to be able to tell you all about my experience. No one else understands and most of the time I don't say anything to my family anymore. I feel like they zone out in the conversation. I did speak to my sister in law over the weekend who has constant pain like I do. I mentioned The Mighty app and her face lit up and she said I love that app! That made me feel good knowing this community helps someone I love. 💜

Anyway, thank you for listening! Stay strong my friends!! 💪🙏🎶#Upallnight #RareDisease #MyotoniaCongenita #Neuropathy #ChronicDepression #formication #EssentialTremors

I've had 3 high pain days in a row. As we all know it's exhausting! In spite of the pain I've been able to sleep until tonight. The pain woke me up tonight and I can't sit still. I'm very conservative about taking my pain meds and I've been using items from my "medicine bag" which is mainly relaxation and puzzles to distract myself. Nothing on my list helps when my pain is above 6/10. I just took my last pain pill. My new prescription won't be here until June 30th. I'm not sure what I'll do if this happens before it gets here. I'll surely seek out your support as I am now. I count my blessings everyday. Thank you for listening if you made it this far. I appreciate it. I hope you are having a better night than mine. #Depression #Neuropathy #Paresthesia #Fibromyalgia #EssentialTremors #Arthritis #RareDisease #MyotoniaCongenita #formication

On those days when I can't find the energy to get up and move I certainly don't want to food prep. My question to you Mighty friends is what type of portable, low cost snacks do you have close by? Items that don't require a refrigerator or cooking. Right now I only have mixed nuts, fiber brownies and fruit cups, not much variety. The nuts I buy in bulk and portion out. T. I. A! #RareDisease #Depression #Paresthesia #Neuropathy #Fibromyalgia #MyotoniaCongenita #EssentialTremors