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Twenty three years ago today

On September 10, 2001, a fellow teacher asked me to observe and give feedback on her social studies lesson for her third grade students. The curriculum was called Core Democratic Values. She asked the class what was special about America. A little girl raised her hand and said “We’re safe here.”

The next day, I saw the second tower fall on a TV during recess. As I walked down the hall, numb, I thought “The world has changed forever.”

Let’s not forget those who perished that day, and the brave men and women who risked their lives in the rescue effort. If you’re old enough, what do you remember about 9/11?

#Memory #Bipolar #Depression #GAD
#OCD #PTSD

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This weekend someone told me what an incredibly thoughtful gift I gave them. "You're… welcome?" I had no idea what they were talking about.

#Memory #MultipleSclerosis #MightyTogether #ChronicIllness #autoimmune #newlydiagnosed #Disability #Caregiving

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What you are is

#Memory #Fibromyalgia #Trauma #CPTSD

The funny thing about the brain is that this cellular system can be altered in so many different ways. From the chemical reactions to the electrical signals and yes even the neurons that produce memories.

If your brain 🧠 changes you change but then how can you say you are you if you are not the same you before you changed?

Fibromyalgia can cause you to have cognitive impairment which includes memory both long term and short term. If you add trauma to this equation and some other factors like stress or anxiety you may develop symptoms of depression and or PTDS or CPTSD. Now if you understand what is happening to your brain 🧠 you may find that family members and friends say you are not the same. In fact people may say you changed. While in actuality your brain 🧠 changed and is not the same.

So to recap you are you even though you don’t act like you. So the old you is gone and a new you is emerging yet you are still you or rather the people that want you to remain you as the old you expect you to be you.

Meanwhile the new you is very different and clearly you don’t have the same mindset as the old you cause you are a new you.

So why can’t you just be you whatever Version or variation of you that is now you.

We can imagine this is ver my troubling for you let alone the poor people in your life who don’t quite understand how you are now a new you.

Yet you are to be you but some of them don’t want you to be you. But are you actually you if your not you.

You can see the confounding and compounded reality of well the new you.

So while you grieve the old you and the friends and family are in denial about you. You can only imagine how hard this must be for all of them let a lone you.

Wait now just be you actually yes 🙌 you get to be you now this is you actually accept you for being you. Just be you. IT is not just you that has to grow and adapt. In fact everyone you know will now have a chance to grow.

Think of IT as a sacred or secret garden 🪴 Only the plants that can co-exist in harmony with you are allowed in the garden. While others that over grow and block other plant are not permitted.

Now you see.

You can just be you and the garden 🪴 your in is just for you. After all your the one with the chronic illness and or disability should you not also require extra care just like a flower in a garden that needs extra attention.

So who now can say hey 👋 you are not you when you are you.

Do new flowers not grow every spring and even though they may look the same are the stems the same are the petals the same and are they the exact same flower that parishes in the fall last year? No they are new flowers 💐

So embrace the you that is new and just be you

#onelove out to all of well #you

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The article below is full of great ideas on how to find a good new doctor…please add your own experiences, tips and suggestions

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

Castle Connolly Survey Asks What Patients Want Most From Their Doctors

Finding a doctor seems to be harder than ever, but it’s still a top priority for the majority of people, according to a recent survey.
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Throwback reflection

There are times when what has been becomes suddenly much more real then usual.
Not as a flashback - they're definitely different - but more like a realization that what's in my memories, in my patterns, in my body and mind has really happened, some time ago in my life.

What surprises me the most is:
I'm not fine, even though I'm better than in previous months and years, but, the hell, compared to before it's like I'm in Heaven.

It doesn't bring me the positivity and mood switch I might expect, it weights the same, most of the times, but it surely helps me redimensioning the whole picture.
I'm grateful, overall, for one thing: now, when I have my crisis, they're still bad and, sometimes, worse than other times years ago, BUT they're crisis: they happen from time to time. (I'm not talking about being on low mood; to me, before, it was much more than that: tentacles slipping out of my head trying to choke me and smash anything inside and around me).
I can feel my mind clean, and, yup, I'm now crying, all of a sudden.

I'd never wanna go back to before.

A week ago I was writing a post I've never shared and, when recalling the bad effects the thing I was talking about had on me, I realized the list was very very long and very very painful and messy.
What makes it often difficult for me to comprehend my patterns and problems is that I tend to hide them, and then forget about them, over the years.

Thing is, there has been terror.
I don't wanna include the details, because I'm aware that for someone they could be not nice.

I shared this picture (search for Riftress on Pinterest, if you're interest - I really like these works) because it is one of the pics I saved back then.
Something have sucked up my own self from my life and I think it was the exhaustion from that period.

Crying helps me too.
If now I'm crying, it means it really has been hard.
Since I tend to hide and minimize, since people shared their issues with me and rarely listened to me, always ignored the signals I was pointing out and since things for me often changed - environmentally speaking - I tend to forget.
To me, now, it feels like I'm based on a void past.
It doesn't mean I'd wanna linger on it: just that in order to understand why I am the way I am today I need to recall.

Times like this one, though, makes me wanna go back that before and erase everything. Why it had to be so damageful.
Again, though, I tend to hide: none really witnessed in person any free expression of my mental state, so, then, it feel more righteous to minimize it. This confuses me.

Though I think it's not fair to compair: the same trauma can have different outcomes on different people; that's why I think crying is helpful -> it spots out the fact that what I'm feeling and thinking about - recalling - has really been a hardship for me.

But it seems impossible that all the dark lump has really left. Did it?
Instead of feeling and expressing itself in dark and full of --- ways*, my mind's just flat. That's the new pattern, I guess.
I've been backfired.
* I don't really feel at ease sharing details, again, but I don't know how to express it.

I still have issues to work on, sometimes - often - I just can take my mind anymore, I often have no energy to live my life, but sure it changed. Time heals.
And I've understood myself and other people better, in the meanwhile, which has been another fundamental turning point.
And I can't express how grateful I am whenever I get to become more aware then before. I love understanding.
So - I still can change and for the better.
There's and I have hope in it.

#Reflection #throwback #Trauma #Crisis #time #Understanding #past #Memory #Pain #cry #Life #mind #pattern #backfired #Healing #Awareness #HealingProcess #exhaustion #Monster #illness #MentalHealth #growing #growth #Present #Hope #change #Grief #Energy

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Concussion, Migraines, major Balance issues, Parkinson’s, tremors, Neuropathy, shoulder/neck pain, back pain, brain fog, poor memory, and no appetite.

(PART ONE) Please send me prayers, good vibes, healing energy and keep me in your thoughts. It would really be appreciated. It is very hard for me to ask for help…but bedrudgundly I have been parking in handicap parking spaces and recently began using a walker. To be honest I’ve had to! I had four falls at the end of December and I am constantly catching myself from falling over and having to regain my balance and re-direct myself. It is very challenging in my apartment where I have no support and very often find myself leaning against walls and always being very conscious to make slow turns part by part like a clock, and get up from a sitting position very carefully the special way I was taught.

Just this past February I was diagnosed with Parkinson’s with Essential Tremors and balance problems, and had to stop a med I took before bed for over 10 years that may have been causing it and then without it I didn’t get a good night’s sleep for over a month and woke up 3-4 times every night.

Two and a half months ago I had a bad fall at my mom’s, scared her half to death and injured my neck and shoulder. I had just started PT for that when I had another big fall … hard, and my head snapped back as I hit the ground. Later that week I was diagnosed with a concussion and I have seen 5 doctors and had about 10 appointments so far since then and been to a concussion clinic. Then I saw another Neurologist and he confirmed what another said…that my symptoms from my concussion likely will last up to 6 months!!! Thankfully it’s already been 6 weeks but there is 4.5 months ahead. But he was optimistic about the progression I’ve had and said I am on the Path to Recovery! But it sure is a rocky path!

Other symptoms I have had are really bad brain fog and memory issues which have left me having to stop and take a long break to find the right words or even remember where I am in a conversation, and having to look up the spelling or meaning of simple words. These two things are very scary and embarrassing…(please continue to Part Two below)

#MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #Selflove #Selfcare #Concussion #balance #ParkinsonsDisease #EssentialTremor #PTSD #COVID19 #Migraine #MigraineBrainFog #Memory #HIVAIDS #longtermsurvivor #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #ADHD #TheMighty #MightyMinute #MightyMoment #MightyTogether #DistractMe #IfYouFeelHopeless #Hope #relief #Love #PeripheralNeuropathy

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Concussion, Migraines, major Balance issues, Parkinson’s, tremors, Neuropathy, shoulder/neck pain, back pain, brain fog, poor memory, and no appetite.

(PART TWO - please read Part One above first)

…and the Neuropathy and Migraines I already had have gotten much worse. I had started a new daily med for my migraines and I was having much fewer and less intense ones whenever I did have one. But since the concussion I went from only 4 a month back to 12 migraine days in December. They can really hijack a whole day from when I wake up til bedtime, with bad light and sound sensitivity leaving me in the dark with no sound and very sensitive to movement. I have had Neuropathy since I first started my HIV cocktail in 1999 but it had gone from being bedridden to manageable. Since the concussion I have struggled even before I got out of bed, and I also have no appetite at all. I was about 205 before when I got Covid two years ago but weighed in at 192 when I got out of the hospital and rehab where I did PT and OT but I just weighed in at 178. This is too much weight loss!

This week I started PT for movement /balance and will do so 2x/wk for 8 weeks plus OT. I have been doing the exercise I was given so far 3x/day. (Please see the Update at the bottom about a new fall recently that was probably another concussion). And with the newest med I’m on I have gotten some good night's sleep. Every 2-3 nights but still some are better than none. I use a walker everywhere I go for necessary support and have started drinking two Ensure drinks a day to get protein I need with limited eating.

I definitely am not a patient person but this 6 month scenario has me putting up with challenges for 4.5 months more and adapting to my limitations. When it’s not one thing, it’s another. It’s really helpful that I have had serious pain and lived with other limitations much of my life, so sadly it’s not unfamiliar ground and I just hang on. I enjoyed watching football this weekend while stuck in my lazyboy recliner like usual and tomorrow I will park in a handicap parking spot and use my walker to get to yet another appointment. I try not to dwell on the limitations instead I choose to remember I am on a Path to Recovery and I won’t be like this forever.

UPDATE: Sadly, I was going to post this 3 days ago, but just fell again and face-planted and hit my head very hard. I have a gash under my eye in the shape of my glasses which rammed into my face. I cut my lip pretty badly and both places are very swollen and bruised including a nasty black eye. Just the week before my Neurologist was so happy to see I was using a walker because he said “I’m glad you’re using it because the last thing we want is for you to get another concussion” I fear (and feel) that is what I just did!

#MentalHealth #Depression #Anxiety #Concussion #ParkinsonsDisease #ChronicPain #ChronicIllness #Disability #Limitations #Selflove #Selfcare #COVID19 #Migraine #PeripheralNeuropathy #HIVAIDS #PTSD
#BipolarDisorder #BipolarDepression #Bipolar1Disorder #Bipolar2Disorder #ADHD #Tremors #balance #fall #TheMighty #MightyTogether #MightyMinute #IfYouFeelHopeless #Hope #Love #Belief #happy #DistractMe #BrainFog #Memory

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