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Update #exhaustion

I've been completely exhausted and in pain for quite a while (not counting the chronic pain I have because of cerebral palsy, which is a life long thing). This situation has been going on for six months. I went to the doctor the other day and among other things she had me do a blood level concerning my seizure disorder meds. I got the phone call yesterday - it turns out that my Keppra levels were high, which causes at least exhaustion.

So now, I have to change up my med routine. I take Keppra, 100mg and 500mg twice a day (I also take Lamictal 150mg, but there's no problem there). What my doctor wants me to do is keep me taking Keppra 100mg, but instead of taking the 500mg, I'll take it differently - cut it in half at 250mg. I think it'll wind up being 500mg somehow, but things'll be different because I'm taking it at 250mg at a time. Luckily, all of the instructions will be on the bottle so I'll get it all straight - I have ADHD, so if the information wasn't on the bottle, I'd be in big trouble.

Now, the irony of this is that the Keppra may be making me exhausted, but at the same time I know by experience that any time I change my seizure meds for any reason, it takes me 10 days to 2 weeks to get the cobwebs out of my brain and used to the new dosage.

Ah, my life is so much fun! Reminder: develop a better attitude about life, ASAP! 😉

Oh yeah...about the pain not caused by having cerebral palsy - how am I going to get rid of that? I have no freaking idea!


I Don't Know #Pain # Cerebral palsy #exhaustion #Depression

I feel so exhausted and in pain. Again! I shouldn't really be surprised, because this a fact of life for me. But for the past six months it's been different and I can't figure it out. Is it the cerebral palsy? Could be. Is it my severe depression? Could be. Is it my anxiety? Could be. Is it the side effects from getting off of Cymbalta and Adderall? Could be. Is it an unbelievable amount of stress about being in Kansas? Could be. Is it all five mixed together? Could be. I don't know!

Yesterday, I went to my doctor's and had a conversation about all this. She said that she didn't know, either. Depression can cause exhaustion and pain, stress can too. She wants me to see a neurologist to get my Keppra (seizure med) levels, because if the levels are too high that can make me exhausted, too! She just doesn't know. (At least she was honest about it!).

The only thing I can think of to do is change my life - be more myself. How do I do that? Well, I could be more honest with myself and others, do the things I love to do and use what I have. It's the only plan I can come up with, so I'll start there. I'll simply have to work through my depression, exhaustion and pain to get things done - unless my intuition kicks in and wants me to do something else. I'm a big believer in following intuition - I just want to be more successful at it!

My doctor and I talked about something else that I'd love to tell you about, but that can keep for another time!

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#exhaustion #Lethargy
New to The Mighty!
Trying to figure out how to navigate the site. I do know how to post memes though.

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When will they understand #exhaustion ?!

"If you would just exercise more, you wouldn't feel so tired". Are you freaking kidding me?! Remember when you had COVID and could barely walk to the bathroom and back to your bed without wanting to collapse into a puddle? THAT is how I feel after 2 minutes of exercise! Argh!!! #frustration #AutonomicDysfunction #HypermobilitySyndrome #cancersurvivor

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I am exhausted. As many of you know I had emergency surgery last year which was as a result of a misdiagnosis. If I didn't get a second opinion I was 8 hours from having my leg amputated and 24 hours from dying. I contacted the private hospital that messed things up and complained about the very poor treatment.

They acknowledged they had really dropped the ball on multiple occasions including a doctor that tried to cover his tracks by deleting electronic patient records and shredding paper records in my file. and have instigated new procedures so that no one else has to suffer this way.

I asked the hospital to reimburse my my counselling costs and to consider making a decent donation to an orphanage in Indonesia. After many months of avoiding the issue I am no closer to a resolution. This is exhausting and frankly I have had enough.

I don't understand how they can be so indifferent and callous. I think I may need to drop this and move on.

#Depression #exhaustion #Relationships #PTSD #MentalHealth

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° " Permanently Damaging My By With This Job ? " ° #SevereChronicPain #exhaustion #Depression

¿ " Everytime I Work As A Cashier... My Wrist × Hand's Hurt... My Sciatica Start's Going... My Entire Body Is Alway's Screaming In Pain.. Everyone Just Think's That Now I Don't Want To Work... And Just Sit At Home And Collect Money ??? Like How Mean Can You Become.. Just Because I'm Not At Work To Pick Up Everyone's Extra Level Of Lazy Work Ethic... I'm Truly So Sick And Tired You.. Should All Read The Amount Of Complaining And Bad Service This Company Get's... And Somehow Me Taking Too Much Time Off... Is Effecting Thier Own Issue's With Having To Work Alittle More When Someone Else Is Out... It's Mind Blowning How These People AKA My Boss And Co-worker's Love To Yell At Me For Not Showing Up... I Do It 1 Day If I Really Don't Feel 100%.. And I Get In Hot Water For It.. I Work My A** Off... And Atleast Customer's See That.. And Appreciate What I Do.. Because They See That I Really Struggle With My #cerebral Palsy... Everytime I Get Off Work I Can't Use My Hand's I Drop Thing's Without Even Knowing Or Feeling It... My Hip's Give Me More Issue's... And Somehow I'm Unmotivated To Do My Task's And Job... And Get Yelled At... I'm Still Looking For Something Else But All I Keep Seeing Are Food Service Job's Only Hiring .. " ? #Anxiety 《 Skaoi Kvitravn 》

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The biggest battle is getting out of bed!

Today I have two appts shrink and therapy I was up a lot with adrenaline rushes and I’m tired. I am the one always giving encouragement but today I just could use a pep talk as I stare at my salt water to drink and coffee. I know it will be a great day once I get up and get moving but when your tired it’s hard to do that. I look forward to my time with God so that motivates me and then hanging with my dog and child. But man on these exhausted days I could use a full on cheer squad 😂anyone else feel me?

#POTS #AutonomicDysfunction #GAD #ChronicFatigue #Anxiety #Adrenaline #exhaustion #Hope #coffee #professionalovercomer

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It’s hard knowing that the chronic pain will get worse and you don’t know when it’ll be. It reminds me of a quote from The Fault in Our Stars- “There's no way of knowing that your last good day is Your Last Good Day. At the time, it is just another good day.” However, it’s even harder when a flare makes you face that reality even more.

I believe my pain is getting worse. Flares are more often, longer lasting, more exhausting, more problematic. It’s a lot harder when I can’t really take painkillers for it.

I got diagnosed with GORD/ gastritis/ hiatal hernia. The symptoms were getting worse, and long story short I had a gastroscopy where I received those dx’s. At the time, my reaction was one of relief. Relief that my symptoms have a physical recognised cause. Because I had just gone through ENT and cardiology where they couldn’t (they could prove the symptoms but not find a cause). Now it’s still relief, but also frustration. It could have been avoided if they had arranged a follow-up appointment when I first went to the doctors about it almost 10 years ago.

Speaking of frustration, I found out that my cholesteatoma actually still appears to be of existence. I was told it was gone, but going over my medical notes it appears this wasn’t the case (besides, it has to be surgically removed to be permanently gone & it wasn’t). Where I keep losing my hearing, I tried mentioning it to the doctor but it got dismissed. Even though there’s things at stake, I’m too tired to fight and get another opinion. Not that I’d be able to anyway- the migraines have caused me to just want to shut down from everything & I only leave the house for appointments.

I’m quite tired of all of it to be honest. It’s exhausting, and being in pain I have the physical exhaustion on top of it. Not sure what else to say or where I was going with this post, but yeah. I’m back?

#ChronicPain #Pain #BackPain #Cholesteatoma #GastroesophagealRefluxDisease #HiatalHernia #Gastritis #ChronicMigraines #Migraine #exhaustion #MentalHealth

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New member & looking for answers due to complex case

#Porencephaly #story #exhaustion #help #Misdiagnosed #underdiagnosed #complexcase #26years #symptomlist #rejected #Support #LongPost

(If you took the time to read this your amazing, seriously!)

Hi. My name is Nick. I'm new here. As much as I loathe this, I'am a complex case. I've been dealing with an unusual dilemma. I get diagnosed with one set of diseases, then getting a second & third set of diagnosis that don't seem related to the 1st set of diagnosis. What do I mean? The genetic test are the first set of results. Then the porencephaly with other incidental findings are the 2nd set of diagnosis with the 3rd and most recent set being due to my throat symptoms: adult dysphagia, adenopathy, & neck crepitus with manual right shift of trachea." I can't be overthinking this but, I can't shake the feeling something is wrong possibly beyond the scope of porencephaly. I got accepted by nord for the campaign but that was about it. My rare disease submission never got posted & I got turned down by my geneticist for further testing with the remark of "There's nothing else I can do for you." *Even though I made mention of my cousin having a cyst that causes speech issues.* ( thanks alot.) Sigh* depressed face*. Oh well, guess I look forward. Along with neurology & spinal specialist in may I now have an neck ultrasound with possible echogram later this month on top of an ENT in late April. One might argue I'm doing this to myself but that would be the partial truth because I let something possibly dangerous get away with tearing me apart even though all the symptoms are painless.

Why? Why this sudden deterioration in health as of a year or so ago? All the waiting has lead to partial answers. I almost want someone to sit down & figure out what I should focus on treating & what needs to be ignored. Sometimes I wake up thinking about wanting to make a model train set or traveling to a distant place & enjoying it. Too bad the former is expensive & requires too much space for our basement. The latter doesn't happen enough for me.

I'm exhausted & ready to just give someone all my records/history & just say "figure it out." I've been wanting this to be over for a good while now but new things keep coming up & I feel like some time soon I'll stop going to doctors because I don't want to deal with the process of getting surprise diagnosis ten.

I've had issues since birth with a neonatal stroke that we now know has turned cystic & has given us a piece of it's mind having been through many doctor visits throughout my 26 years of my family & me searching for answers. Here's the rundown: List of symptoms

Larygnomlacia-infant historic

Tinnitus-started at age 15

Tmj-age 15

Eye tilting up-age 15

Floaters-age 15

Dysphagia*~2019 couldn't swallow liquid properly.

Pinched nerve in neck~2021 got better with chiropractic intervention diagnosed as pots.

Neck/throat clicking same time as dysphagia & pinched nerve. Got better with chiropractor but still have some dysphagia & throat clicking.

Feeling of food being stuck in throat*~2019

Recently diagnosed adenopathy, esophageal dysphagia, & neck crepitus.

Chiropractor caused spinal lean with digestive upset in early 2022. Digestion is ok now. But posture lean is still an issue.

Recently diagnosed through mri & x-ray with porencephaly (brain cyst) this took 26 years to diagnose, mucous retention cyst, hemosiderin deposit, choroid plexus cysts & scoliosis of upper region with mild lumbar retrolisthesis.

Grip weakness- started after leaving chiropractor in Feb. 2022

Alarming rate of deterioration from being relatively healthy to needing cane due to posture lean. Most recent symptom is waking up to my left arm on my chest & having difficulty keeping it straight.

There was a change in walking pattern as of a few years ago due to coordination challenges since toddlerhood.

At birth I had a neonatal stroke looking like a premiee at full term. There was an undescended testicle (corrected at 6 years), 2 small holes in heart that healed on their own, microcephaly concerns, intrauterine growth restriction though grew out of it very quickly to 6ft 3in, & thrombocytopenia at birth.

Have strabismus, nystagmus, hyperopia, optic blurring in right eye.

Posture lean causes opposing foot to stand on toes.

Followed closely as a child but was dropped when we moved states in 2011.

Been in colorado since june of 2017.

Use to have sensation in left arm of pulling sensation when peeing.

Genetics testing according to the geneticist is insignificant but carrier for cep290 maternally & have chromosome 4p31.3-32.1 microduplication syndrome paternally with unknown significance which falls under chromosome 4p duplication syndromes (only 85 in the world.)

Also have unusual anal quivering (seldom talked about)

Have seen multiple doctors including neurologist (seeing one in may.), 2 physical therapist, 3 chiropractors, , neuropsychologist (childhood), on my 3rd primary doctor & genetics. I'm also seeing a spine specialist in May.

In tears* someone help me put this all together because it's destroying me!

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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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