Femoral Acetabular Impingement

Hi everybuddy. I'm Nox. I'm a 42 year old disabled transgender guy living with my caregiver/girlfriend in the Detroit Metro area. I was disowned by my entire family and I lost custody of my children 16 years ago cuz I came out of the closet and my daughter's father thought transgender people are pedos. I had no support and yes money and resources don't exist for minorities like me. So I've been living in survival mode for...a very long time. I'm tired. My partner and I just need someone to care and be there to talk or grab coffee and talk about life.
But you need to understand. I'm very ill.
4 years ago I was diagnosed with spinal epidural lipomatosis (SEL). Basically fat is glued around my lumbar spine and crushing my sciatic and other nerves. It's a very rare condition.
But wanna know what's even more rare?
Less than 4 years after the surgery to remove the mass, it's grown back ...worse this time. I need another surgery. I'm trying to play gopher and get records in the hands of my previous neurosurgeon. It's... Difficult. My pain specialist is very hard to get in touch with. So it's a process.
3 months after my previous surgery I had major pain in both hips. I talked to my neurosurgeon and he said he doesn't do hips but he wanted to do something so he ordered an MRI of my hips. Bilateral femoral acetabular impingement, bursitis, osteoarthritis, and spurs in both hips. He was really sad for me. He understood how much pain I experience daily and he couldn't do shiznit to help me. I saw a hip surgeon... Long story short the answer was no because I'm too young. Ok
Fast forward to last year. My vision has been really bad. Double vision and migraines. So my neuroopthalmologist suggested I do some simple eye exercises called pencil push-ups. I was sitting with my wife and I just absentmindedly start doing one and she loses her cool and said omgawd your eyes just went in different directions! So I had her record this phenomenon so I could message my neuroopthalmologist. He responded the next day and says " you have bilateral intermittent exotropia and it's poorly managed. I'm gonna refer to to the strabismus surgeon who deals with kids as well as adults." Ok I felt good about it.
I saw her 3x and tried explaining. She told me I'm too old for corrective surgery. Ok.
I've been told "no" enough times to learn not to be the squeaky wheel. I've gone about 2 months with barely any appointments cuz I am burnt out and losing hope. Unfortunately I can't sustain no appointments cuz the meds that make me functional requires seeing my specialists.
I'm losing hope. I'm exhausted and feel so alone. The only 2 people who I have (family or friends) are my girlfriend and her mom. We don't have a vehicle. So I don't get out to make new connections with humans.
Wanna grab coffee and talk about comic books? I really need someone to care.

Friday we were supposed to attend a witchy event at Canterbury village. I had been looking forward to it for 3 months. Unfortunately I could hardly walk and I couldn't see straight.
Today we were gonna go to the mall for bubble tea and Sbarro's pizza. I just wanted to revisit my teen mallrat years. My right hip is forked.
Tomorrow we were gonna go to Dixieland flea market. I'm not sure how I'll feel tomorrow. I hardly know how I'm gonna feel from hour to hour.
My hip and migraine have been this bad all week. It's been 9 out of 10 almost as soon as I wake up. I just want a day of peace. One day of no pain.
#FemoralAcetabularImpingement #sel #Bursitis #Osteoarthritis #BackPain #bonespurs

I woke up with yet another migraine. And my lumbar is throbbing. I quickly got my meds from pauley and I'm sitting on my bed just kinda existing. My pain is nuts. I guess I should probably eat a gummy earlier than I haven been. We have plans for 4pm. We really want to go to this event. It's at Canterbury village so we can also get donuts!
I'm drinking some sugar free Javvy brand protein juice mix right now. Yesterday I got 3 bags of Javvy protein coffee. I ordered 3 bags of the new flavor, toffee nut. It goes well with the pumpkin pie flavor protein powder.
I'm in a very serious amount of pain. I want cold weather so I can wear my onesie footie pajamas. I can't find my fuzzy hoodies.
#spinalepidurallipomatosis #FemoralAcetabularImpingement #BackPain #Arthritis

I woke up.
Clearly waking up each day is a trap.
The assassins are shitty.
But oh gosh
Whoever flipped the migraine switch...
And oh fuck
My right side from below my ribs and to my knee.
I am so glad I'm not leaving my apartment for any reason today. This pain is ridonkulous.
But I made a cold PSL this morning.
It's almost entirely pumpkin ingredients except for the creamer. The creamer was an ounce of creme brulee. It was all that was left in the bottle. It pairs lovely with pumpkin. But I think the next flavor I'm gonna get is butter pecan.
So I'm very excited cuz I ordered a bag of the new flavor of Javvy and it's coming in a few days. It's toffee nut flavor. I ordered 3 bags. The reviews on the new flavor is phenomenal.
It's been 2 weeks since I last had Javvy and I'm just miserable. The pumpkin pie flavor protein powder is good but it's half of the drink ingredients I need. I'm trying to make a chocolate hazelnut pumpkin latte. It's the best coffee I've ever had.
I'm hunting for affordable chocolate hazelnut flavor instant coffee. Or just hazelnut. I can add either chocolate syrup or hot chocolate mix.
I need a new french press. I had wanted to share my favorite tea with Pauley last night. But we currently can't locate the unopened bag. I'm sure we'll find it.
My favorite tea is actually an autumn flavor that I discovered about 8 years ago. It's called psychocandy. It's roasted pumpkin, caramel, and rooibos. Technically it's not a true tea. It's a tisane. Most of the tea I drink are tisanes. They're herbal, fruity, bright and vibrant. But psychocandy is deep and sweet and delicious. I prefer sweetening it with maple sugar.
My right hip just popped for the 5th time today. It's kinda squishy.
I rescheduled my appointment for having the 2 bumps on my head lanced and drained. Mostly because it's not even remotely squishy. It's a hard bump and it's growing. I saw my doctor a week ago. She asked me what I need help with and I pointed it out to her and said "I'm pretty sure this is a Pilar cyst." She immediately started to Google "Pilar cyst identification". Sigh.
Then I told her about the regrowth of the SEL. She had no idea what it was. I tried to explain in very simple terms. I told her to talk to her boss and tell him "Nox's SEL grew back" cuz he loves rare diseases.
My lumbar is screaming and my right SI joint is pulsing. I'm gonna eat half of a pineapple gummy. It's gonna make my pain go away but I won't get a buzz. I think they taste like pickles.
Here's hoping for the best.
#hippain #FemoralAcetabularImpingement #spinalepidurallipomatosis

OMG my left hip is throbbing again. And my eyes...might as well be grapes at a wine stomping festival. I didn't sleep last night. I've been eating very poorly lately. I've been drinking IQ Joe instead of making myself a pot of coffee. Which is fine, it's strong coffee and it's toasted hazelnut flavor. It's delicious.
I have a big stash of coffee but I just got some special tea from August uncommon. And I want to have a tea party with my darling stupidhead wifey Pauley. I was thinking chicken salad sandwiches and biscotti and cinnamon tea for Pauley and pumpkin caramel rooibos tea for me. It's ridonkulously delicious. I think she might enjoy it.
I hate being home alone. I end up curled up in my bed with my blankie and lux my cow baby.
I am sweating quite a lot and I'm overheating. My psychiatrist thinks the sweating is being caused by my Zoloft so he reduced my dose. I guess my frequency of sweating has decreased. He said he wants to get me off Zoloft completely and increase my imipramine. I used to take 75mg of Zoloft and now I'm down to 50mg.
I'm gonna go lay down and meditate for a while...and other lies I tell myself.
#FemoralAcetabularImpingement #BackPain #Bursitis #Osteoarthritis #RheumatoidArthritis

The last 3 days have been rough.
I have no answers except for the negative of the pressure of the CSF. I'm waiting for test results from the biopsy of the CSF. My portal sent me an email saying there are test results but I can't access it.
I spent 7 hours in the hospital last night. I had incredibly horrible lumbar pain and both hips. They acknowledged how painful it was and hooked me up with muscle relaxer and a lidocaine patche on my lumbar. I was also very stoned during the appointment. None of my doctors had a problem with my being stoned. I ate half of a 400mg gummy. I knew what I was doing. But that didn't help me with the pain.
So as far as the pain yesterday morning, it was at 9. I waddled the best I could. But this pain is beyond manageable. My hips are waking up. The pain is at 7. But the lumbar pain has never had comfort. And right now that pain is at 8.5.
So that's current news. #lumbarpain
#FemoralAcetabularImpingement