9

Months ago I was at my very worst. My health had gotten so poor that I was fully bed bound and unable to do anything on my own. I also needed constant care with my memory getting so bad I forgot my name, who my family was, all friends a missing blavk hole where they should have been in my memory. I kept getting lost and confused not remembering basic words and my hands were still excruciating with their inability to work getting even more drastic. My pain was a 10+ though doctors only think pain is a 1 to 10 we know it still can rise to the thousands.

Suicidal thoughts were so bad I was actually planning though losing a best friend's to suicide at 15yrs old still kept me and will always keep me from taking a step no one can come back from that haunts family and friends and leaves things so very messy and heartbreaking.

My so-called pain doctor was still doing nothing after 3 years and countless appointments begging for help I'm any form. He kept me on the same teeny tiny dose for years and wouldn't try any other meds or any other options. I had had no episodes ever of overdose or failing any drug tests but still he refused to help at all despite my first appointment with him where he promised to help me get to where I could shower and dress myself daily.

I wanted to ditch him as my doctor soooo many times despite him being my third and last option since we hadn't been able to find any replacement.
I realized the stress and misery he brought me always and especially after every three month appointment. It wasn't worth the useless dose of medicine I was on. Many doctors left me in a lurch to taper off my meds on my own. I knew how to do it so I called and said I was dropping him as my doctor. From that moment on I felt relief like the biggest weight was gone. Yes my pain was excruciating but my mental health was the biggest mess because of so many doctors refusing to help and leaving me since I was 'too complicated for them'. They just didn't want to put in the work at time.

Why be a doctor if you don't want to help anyone?!

Steadily my mental health improved immensely. I had moments where I was happy though still in pain. Naturally I am a very optimistic and happy soul but moving to a new state and having the cruelest doctors unsurprisingly made me so much worse.

I have a home health nurse that actually wants the very best for me and that was priceless and enough.

And then I got a brilliant and lovely rheumatologist who actually asked intelligent questions, explained answers, and was invested in taking as much time as needed to finish solving my health. He UNDERSTOOD!!! And at my second appointment with him he told us the answers we had been searching for for 17yrs! Since I was 13.

On top of my many inherent diagnoses I had psoriatic arthritis spine arthritis, and rheumatoid arthritis!!!!
The thing that we all thought was lupus but just barely didn't fit was the psoriatic arthritis!
It was the last piece of a puzzle we had tried solving many a time.
Interestingly I had finally narrowed my research to these diagnoses and was months away from figuring it out too.
But I was very happy to have the answers early!

My first appointment with the rheumatologist he gave me arthritis medicine and WOW did it work and so much better than any medicine my hundreds of doctors over the years had tried.
My hands improved!!!! I had feeling in them again and was able to do so much more than I had since I was 16 when I had my waist down reconstruction surgeries that would lead to arthritis all over my body especially to where I was completely unable to use my hands by 17. It was so embarrassing and painful that my body seemed so intent on not working eight. Oh how I just wanted you be normal!!!

And my last but of good news is I at LAST got a new pain doctor after being without officially for three months. My mental health anxiety and depression had improved so that my stress and thereby my pain had decreased to #9 on the pain scale!!! After being a 10 for almost 8 years!!!!!

My new pain doctor was COMPLETELY the opposite of my last one.

From a guy who ALWAYS worse fancy suits and thousand dollar shoes to one in jeans and a t-shirt.
From a guy who never smiled and wouldn't put in time and effort to a guy who smiled the whole appointment and was ready and Excited to put in the work to help me live my very best life!
From a guy who was too proper and cold to one who was so friendly and happy about his job.
From one who was terrified of any teeny hit of using medicine to one ready to take any risk if it meant helping his patients be safe but with less pain.

My new doctor was like the twin of actor Vin Diesel and he was so SO SO tall!
Even better since the drive is so hard for patients to do always, he would do telehealth for two appointments, one in person, and then another two telehealth appointments etc. Yay!!!!! Hallelujah!!!
Lol I was and still am so happy! And he wanted a telehealth appointment a week after the first appointment yo make sure my new meds were the best option.

For YEARS I have wanted a doctor who was there to help always and one who helped me with my meds rather than drop me in a black hole and leave all alone to figure out and guess by myself. To actually be a TEAM and work together to help me help my body so I would LIVE like I had begged all my doctor to help me to no avail! I could have a LIFE that I loved and do fun things and spend time with my family!!!! No more sleeping life away in pain and misery and hopelessness!!!!
It only took 17 years! Haha!

So now I am BACK and back to my happy self. I still have aches and pains full body and I have all my health issues and more besides but I am in a better place than I have ever been.

All of your support and love and encouragement to take time for ME was what I needed. I am so thankful for it and for all of your help over these many years.

Now if only it could get easier to post with no problems like before I would dare to call life quite perfect right now ;) 🙏

So consider this a reminder thar life is worth it! If things suck now, just remember that if one day they come up with something that can help you and your conditions, I PROMISE you will want to be around then to live your best life.

Hold onto hope! DON'T GIVE UP!! Please please don't. Through sheer will and the grace of God I am still here and gosh do I look back now and say it was worth the wait I wouldn't want to relive it lol but having a possibility to go to the movies again and do fun things out in the world with my family? It is priceless! Please hold on. Please. You and your best life are worth it! You are Not alone in this.

I am cheering you on and I am on your side. Your happy is out there! You CAN do this!!!!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Grief #Insomnia #Lupus #Lymphedema #Headache #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #plantarfasciitis #PanicAttack #PanicAttacks #Psychosis #PsoriaticArthritis #RareDisease #RheumatoidArthritis #AnkylosingSpondylitis #MentalHealth #MemoryLoss #MightyTogether #SuicidalThoughts #Scoliosis #Migraine

So I’ve noticed those with CPTSD and PTSD often report similar experiences. I hadn’t realized how typical my own were until I read others stories. So I thought I’d make a list of common shared experiences in those with PTSD/CPTSD…

#1 Your abusers and told you the abuse was normal and everyone does it ergo you’re being dramatic.

#2 You blamed yourself without even realizing it. Let’s face it we don’t walk away thinking it’s our fault clear as day. That’s illogical. But we walk away with doubts that eventually dig into our heads while we’re not even paying attention. The next thing we know we think we’re inherently bad and deserving of being treated as such.

#3 You switch back and forth from having sympathy for you’re abuser to believing they’re evil incarnate.

#4 You wonder if you’re too damaged to think for yourself. If you don’t have experience in what’s right then can you know what’s wrong?

#5 You avoid watching any movies or tv shows with extremely painful emotional expressions yet are strangely drawn to them.

#6 You wake up feeling panic and/or anxiety and expecting something terrible to happen to you every day.

#7 You struggle to set necessary boundaries with others because you worry they’ll reject you. Perhaps you feel you’re not worthy of boundaries.

#8 You don’t trust anyone and struggle with emotional intimacy. Perhaps you feel scared everyone is going to hurt you.

#9 You have chronic migraines, irritable bowels, and/or body aches all the time.

#10 You need to be in control of everything at all times so you know what’s up. Even things that to others seems inconsequential.

#PTSD #CPTSD #Trauma #Abuse

I was in church when someone said stuff that was really triggering and I screamed the f word at her. I proceeded to call her a rich spoilt brat who leeches off her parents 🙃

The reason I was triggered was bc in knowing that I'm unemployed & not drawing an income, she asked me to cut my expenditure by finding things I can do without - & when I mentioned my highest mandatory cost being therapy, she said "you know my stand on therapy .." which in a prior conversation years ago - she saw it then as something which does not produce lasting behavioural change as a man-made tool, the only way to produce lasting change is when God's Word changes you. She even cited herself by saying that in a down period, she prayed & cried with loved ones instead of seeking therapy. This was a few years back, I just came to realise the goalpost has since shifted.

ANYWAY. Woman tatts on this to my cell grp leaders who in turn tell this to my cell grps pastor.

We met the pastor - me, my two cell group leaders, & the person I called names at. It started as like a words thing for what I called her -- I'm not sure if it has entirely warped itself to spiritual abuse?

For other reference also: 10 Things You Should Know about Church Discipline

This ^ article was very helpful, in particular points #7 & #9 . For disclosure, pastor took me out of my cell group as "punishment".

"9. Churches must take great care against abuses of discipline.

Church discipline can become abusive in a number of ways: leaving the decision in the hands of one or a few instead of the whole congregation; relying on regulated processes instead of individual pastoral care; being characterized by a fundamentalistic mindset that’s uncomfortable with the tensions which are inevitable in a fallen world and insisting that every problem gets tied up with a nice bow; or possessing an unbalanced and unbiblical concept of authority."

I explained, in our meeting, the tension between where I am, where I am required to be, and where I have come. I was told by one of my cell grp leaders (with the other in agreement), that there are no percentages in this - either I am sorry (100%), or I am not (0%) Would it be fair to say that requiring me to be fully sorry .. is a clash of "insisting that every problem gets tied up with a nice bow", per the article states? Church talks about not being perfect, but moving in the right direction. I do think, in this conflict, I am moving in the direction that the Bible calls for and God desires. I think requiring me to be fully sorry immediately .. is a clash of "insisting that every problem gets tied up with a nice bow" - ??!?

I call out on the spiritual abuse & I get -

"I would like to hold on to a biblical definition of repentance, rather than have individuals decide what it should look like and be unnecessarily distressed by various definitions."

Is this spiritual abuse + gaslighting?!?!

#CheckInWithMe #MentalHealth #Anxiety #Church

Double dating with wifey and a few neighbors tonight going to see the new FF movie is it any good am I going to be entertained or aggravated? I’ve seen every one so far the last one annoyed me the films have become kinda corny and so detached from any kind of reality that it’s crossed over the line to annoying I know the original film was a remake from a 50s film betcha didn’t know that lol the 2001 film was about illegal street racing it’s so far past that now it’s unrealistic it never was to begin with Nitrous In reality isn’t flammable ughh I’ve promised my wife I was going i guess I’m just super anxious I don’t know our neighbors at all I don’t do well with new people in social situations I limit myself on purpose to avoid any bullshit BPD overthinking it’s just easier to close myself off anyway I just want to figure out what kinda night I’m in for

Following is the list of the ten things out of many more which my special needs little boy taught me, its been three and half years that hes no longer with me,but still continues to teach me about resilience, hope,miracles and strength. #1 . MIRACLES HAPPEN: I started believing in miracles ,coz I got to see them quite often, the developmentally delayed hypotonic child who couldn't raise his neck at ten months became the wonder boy who would be jumping up and about. #2 . YOUR CHILD BECOMES YOUR BIGGEST STRENGTH: My son showed me courage like a warrior I never knew he could be,he taught me to over power week emotions,made me rational, more logical, made me aware of my inner strength, the harder it got the tougher I became. #3 : BE KIND:One of the best things he taught me was to Always Be Kind, at times he was laughed upon, made fun of, but he would always respond with a smile and would often say Sorry,I've learnt to say Sorry and Thankyou, sometimes a bit too much. #4 :STUBBORNNESS BECOMES YOUR FINE TRAIT :When you are living with a medically complexed child ,and you have all the other issues to deal with also,Stubbornness comes from within, you need to be head strong and stubborn. #5 : YOUR INSTINCT IS ALWAYS CORRECT: Even if it's a teeny tiny gut feeling Go for it,theres something super powerful about a Mothers instinct, even if the labs or scans tell differently, follow your gut instinct, it comes from the heart. #6 . YOU DONT PANIC ANYMORE: Even though the stormy waves will be gushing to and fro in your life,you learn to remain calm,not panic ,take charge, amidst , my sons dangerous seizures, with constant falls,cuts and stitches,I discovered the New Calm Me. #7 :YOU LEARN EVERY DAY HOW TO BE A BETTER MOM:Learning becomes apart of you,no matter how learned you are, your child gets to become your biggest teacher,you learn the lessons of patience, strength and unconditional love, your child will make you the advocate, you always wanted to meet. #8 :YOU WILL BE MAKING EXTRA ORDINARY NEW BEST FRIENDS:Along the journey of raising my little boy, I met similar and stronger moms,who continue to inspire me till date with their strength, wit and hope. #9 :YOU'VE GOT THIS: No matter what the world,or Google,or doctors or therapists tell you, You've always got this, You become your biggest support,every time you get knocked down,you'll stand up stronger than before. #10 . ACCEPT and LET GO: sometimes ,comes a point when the journey is also about braving through the most painful moment,After all the storms you've sailed through, you also learn to surrender, to the will of Al Mighty, You surrender and you let go, only for the memories to give you new strength.

9.
Q: I am a bit of a science geek, where is all this scientific proof that the fibers are keratin/collagen and grow from the patients own human skin? It seems that everywhere I turn on the internet, including Wikipedia, refers to the outdated flawed CDC report from 2012. Either that or the reports claiim this comes from chemtrails and go so far as saying this is from aliens and zombies.
A: If you are a super-geek you will be most interested in this scientific study from Europe:
link.springer.com/article/10.1007/s00403-017-1797-1
Otherwise, refer to this page at the Charles E. Holman Foundation which will provide you with a long list of links to many scientific studies over the years.
www.thecehf.org/morgellons-disease-research.html