FAQs

I use a lot of abbreviations in my journals. Here are the ones I can think of:

• Zanny = Zanaflex (Tizanadine generic). This is a muscle relaxant.
• Ibu = Ibuprofen
• Ash = Ashwaghanda. Herbal supplement.
• Ag = Agmatine. Supplement.
• Meds = Usually pain meds or whatever prescriptions drugs I have. Probably not zanaflex or ibuprofen.
• #.#g = Amount of grams of the supplement I use for pain.
• D2 = Destiny 2 video game
• TAB = They are Billions video game

Yes! You may also wonder if it’s easier to make a website than to find the help I need. The answer to that is also yes. The US healthcare system is incredibly broken. Doctors don’t have to treat patients just because they walk in the door. Not many doctors take my insurance. I’ve actually had the receptionist laugh at me when I asked if they take my insurance. This has happened multiple times. Please click here to see the type of help I need. I basically need someone to get me to the right doctor and get the right procedure.

I suffer through each and every day. I often scream out for help in my journals. These were originally written only for my eyes, but have since been published. I often just need help to get through the day, but sadly, I don’t think anyone could actually help with that. People can only help with the bigger picture items.

No. I started using Del for online gaming several years ago, and it just stuck around. I am a super private person, especially on the internet. I take every precaution I can to stay private or anonymous. I deleted my facebook page many years ago, and I scrubbed my name from all those websites that have personal information about people.

It is very difficult for me to post all the personal information I have been posting on this site, but I feel it’s necessary to help myself and others who are going through the same issues. The pen name Del provides me some privacy while still providing a reasonable sounding name. The Tuesday part is just a play on the “two” in twodel.

I believe everyone should be as safe as they can on the internet. Practice proper Security, Privacy, and Anonymity. Cryptoseb’s white paper is now being hosted on Privacytools.io. It is a good place to start to learn about good practices.

I often post that I did a short, medium, long, or church walk.

• Short walk = 1 mile
• Medium walk = 1.5 miles
• Long walk = 2 miles

The church is across the street from where I live and sometimes I can only manage to walk around the parking lot. There is also a forest preserve close to me with walking paths, and I walk there if I’m able.

Several years ago when I was going through the same exact pain issues, I realized I was both delusional and delirious at the same time. I was playing a lot of online video games at the time, so I change my gamer name to 2Del. I also started telling people online that my name was Del. I certainly don’t mind using some sort of alias in the online world.

When the pain issues began again, I started using that gamer name again. This time around I have been taking lots of steps to make sure I don’t fully slip into psychosis and a delusional state, though my efforts have only been moderately successful at best.

I searched for 2Del and twodel, and twodel.com was available, and only $7! It seemed too good to be true, so I registered it.

The facet joint injections have helped. Usually only for 2 days. These injections to me are diagnostic. I’ve never gotten lasting relief from them. Most people don’t. They are a necessary step on the pain management journey. Insurance companies won’t approve anything until you complete them.

Heat causes muscle spasms. Ice packs are probably the most effective temporary treatment. Ketamine was super helpful in the past, but it didn’t help the last time I tried it. Any medication is only temporary and usually very problematic. A whole food, plant based diet helped in the past, but not anymore. Exercise is usually helpful, but I’ve been unable to get exercise because of the pain. My inversion table helped a lot in the past, but it has stopped helping for some reason.

Distractions help get me through the day. Video games, TV shows (I can’t focus on movies), Twitch streams.

I’m a super private person, but I want the world to see what I go through on a daily basis. I want people to be affected by it. The US healthcare system is so very broken. Doctors don’t treat patients if they don’t want to. Insurance will deny procedures and cause the doctor’s office to have a peer to peer consult, which they don’t want to do.

I want doctors to see what a pain patient’s life is really like. I want lawmakers to see how broken the system is so they can help to fix it. I want other pain patients to see this and know they are not alone, and that if I can make it through, so can they. I want pain researchers to see this so they have a better understanding of what pain is and how it ruins lives. I will even volunteer as a guinea pig for any researcher to do whatever they want with me to study pain and develop new medications and procedures. And I want the average person to see it so they can develop empathy for disabled people and pain patients.

Yes, I have Medicaid (ACA). Most medical centers don’t accept it though. The insurance company has a search feature to find doctors within the specialty I need. I usually have to go through 10-20 listings until I can get an appointment. Sometimes they don’t actually take the insurance, the doctor has moved or the practice is closed, they don’t take new patients, or they have no availability for many months. I would very much like to purchase proper insurance, but I’m outside Open Enrollment right now.

Yes, and it doesn’t agree with me. CBD has done absolutely nothing for me. I’ve tried it without THC and with different ratios of THC, and it does nothing for me.

THC and I have never really gotten along. It occasionally treats me OK, but usually it completely obliterates me. I get super couch-locked. I can’t open my eyes, my memory lasts about 4 seconds, I can’t turn my brain off, I can’t sleep, and I get anxiety because I can’t remember what I was just thinking about. The anxiety occasionally turns into panic. This all seems to be streaky – I’ll get non-stop panic, or I’ll get a period where it helps a tiny bit. Even when it helps, I’m totally non-functional. I’ve never been able to go out in public while using it, so it’s not that viable of a solution for me. At best it simply helps me get through the day.

Yes, multiple times. It takes a ton of mental strength and a very big effort to deal with the pain without medication. The pain always sticks around, or comes back very quickly and ends up forcing me back on the meds. I’ve been through these pain issues many years ago without any kind of medications and the effects were far worse than what I feel now. Even when I can get by without medication, I’m not as active and often can’t be upright for most of my days.

My goal is always to be drug/medication/alcohol free. Whenever I have a streak of good days, I stop or taper meds. When I assess whether I’m better off with or without the meds, unfortunately, the answer is that I’m better with them. It’s not a medication problem, it’s a pain problem.

It’s amazingly difficult for pain patients to get medication from doctors these days. My pain management doctor and the rheumatologist I just saw both said they don’t prescribe medication. One would expect the specialists in their fields to prescribe meds for these specialty diseases. This means I have to mainly take supplements.

I use SamE for depression. I take vitamin D and magnesium. I take a one a day vitamin. I take ibuprofen for inflammation. I have Zanaflex for muscle spasms, and I recently got Lyrica for fibromyalgia and nerve pain. My primary doctor is prescribing these since the specialists won’t (and he is not happy about it). I use magnesium oil and a menthol ointment on my back .

I don’t get along well with cannabis. I will use alcohol to help treat the pain. I don’t drink recreationally anymore. I dislike it, but it helps get me through the impossible nights.

Sort of. Getting psychiatric care was super difficult. I called about 20 providers who were listed on my insurance company’s website. Most said they didn’t take that insurance. The others said they didn’t have availability for 8 months, or they weren’t taking new patients. I had just started the insurance, and a representative from the company called me to offer an orientation. I asked her for help with psychiatric care. She called 7 or 8 providers and finally found one for me. (They ended up closing the location and I had to drive 55 minutes to their other location.)

The provider was a nurse practitioner who seemed to have very little understanding of psychiatry. She diagnosed me from a questionnaire. She prescribed me a drug interaction, which the pharmacist thankfully caught. When describing my symptoms of psychosis, she asked if anyone had previously died in my home because “sometimes ghosts can cause these issues”.

So, yeah, I kind of have metal health care. I can’t go back to that far away location again. It’s just too far for me.

Absolutely. It figuratively and literally drives me crazy. When the pain is really bad – like an 8/10 or above, that is when the most psychological damage is done. Depression and anxiety are constant, and I’d say that’s a given. If I spend too much time at an 8 or above, it tends to break my mind. Usually some sort of psychosis or dissociative issues. Unreality issues. It’s terrible. I started taking my current supplements to avoid the psychosis. It’s so painful and ridiculous that I would do almost anything to avoid it.

I would say video games have saved my life in one way or another. When I can’t play games, I watch a lot of Twitch TV. Having a live broadcast with like minded people has been so incredibly invaluable. It’s a great time killer, and you can get some sort of support from the other people in the community. The entertainment offered by those streamers has been a real life saver.

When I can actually play games, it’s a wonderful distraction. Games also work your brain and your reaction timing very well, and I need to exercise my brain. They have become a sort of litmus test for me as well. If I’m able to sit and play some games, then I must be feeling better. If I don’t even turn my PC on, then I’m not doing well. If I get back into grinding on Destiny 2, then I must be doing really well.

There are days when I feel better and should be getting things done, but I just can’t be bothered. When I finally get good days, I also still fell burned out from all the struggle I just wen through. These are days of rest and recovery. Kind of like how you don’t want to spend your precious days off doing things for others. Playing games makes me feel normal. I usually have fun playing. When I feel really good, I’ll be social with other players and find new friends to play with, although that hasn’t happened in quite some time.

There have also been days where my anxiety is off the charts. I can barely function because of it, but if I’m able, I’ll find some mindless activities to play in Destiny 2 and immerse myself in the game. This has hard-carried me through some truly awful nights.

Playing video games is one of my favorite activities. I used to play online games with friends. I have a PC, so it’s very difficult for me to sit at my desk and play games. So the current answer to that question is “not many games at all.”

I used to be a Destiny 2 main. I used to enjoy all the sweaty PvE content, but when I play these days, I usually only run the vanguard playlist. I also play a fair amount of They are Billions custom maps. TAB is a real time strategy/city building/tower defense game. I used to play a lot of RPGs and farm/life sim games, but I have such a hard time focusing on the game, and I don’t have any patience for the grind.

I always hope to get back to gaming. On my decent days, I usually like to get as much time in as I can to distract me from the constant nightmare I deal with.