#I have enough health problems and autoimmune stuff going on that I’m terrified of getting any more stuff from covid

[bother-blame]

I woke up with a migraine, and then panicked when i tried to eat something to take ibuprofen bc I realized I couldn’t taste anything in the front of my mouth. then I remembered I burnt my mouth on miso soup last night and that’s probably the reason why 🫠

[erikunmasked]

The Long Literary Haul

I suppose its time to vent about the subject that I probably keep the most closed off. I'm not afraid to discuss many things, from sexual health and gender identity all the way to masculinity and emotional barriers... and I pride myself in that. When it comes to my own illnesses, however, it becomes very uncomfortable for me.

I grew up in a single parent house. My mom busted her ass as a machinist, house cleaner, you name it all to keep us going. When she was diagnosed with Lupus, she kept working until she felt she couldn't anymore. (In her forties was her diagnosis timeframe) For my diagnosis, I had just returned to college that September. Had a relatively new job. Was cast in my first male role of any consequence. I had been having trouble breathing, had back pain and was generally just feeling sick. Eventually, I knew I had to at least go to the doctor. They sent me straight to the ER where I was immediately admitted. I had double lung pneumonia and pleurisy, quarantined to a room for 8 days. I wasn't getting better. I had huge red patches on my legs. My temperature was 104s. I didn't want to eat anything. I was quite literally dying. They finally gave me the diagnosis of Lupus, Rheumatoid Arthritis and Sjogrens. I was only 23. Being the person that I am, all I wanted to do was get back to rehearsals. So after I was discharged I went home, slept for 24 hours and went right back to college. That sets up the scene for how I am.

Flash forward to now, almost 10 years later. I'm on an injectable low dose chemo medicine called methotrexate, which isn't doing enough for me. The next step is infusion therapy. I've been putting it off for about 2 years for a variety of reasons.

I'm hurting.

The way we Lupies best describe our condition is to imagine you have the flu. That run down, exhausted, ache in your bones, feverish stuff we all know and loathe. Now picture being told that's a good day for the rest of your life. That's this autoimmune disorder. I consider myself lucky in that my RA is more active than my Lupus. I'm not currently showing organ damage, which is what tends to happen. (Kidneys are usually the first) But I feel like I'm 80 most days. There is always something bugging me. Tendonitis, stiffness, movement/flexibility pain... you name it. Its exhausting.

It compounds when I factor in having Raynaud's (which is a circulation problem in your extremities), IBS and panic disorder. I never know what I'm going to get on any given day. The panic is the newest and something that has mangled my life. I'm far better than I was when Celexa first brought on the start of my panic cycles (I had a very rare reaction to it that essentially brought on PD where I'd never had it before in my life) but I still deal with dizziness, shortness of breath, vision disturbances and disassociation at random.

I've gotten really...autobiography here, but I feel like it needs stated for backstory.

Where I'm at now with trying to heal mentally and make my life better is...I don't know how. I am overwhelmingly stuck. For the past 6 months or so, I feel myself getting worse. My lupus butterfly rash looks like a sunburn on my face constantly now. I'm having new symptoms I've never had before (like mouth ulcers) and just....generally feel myself slipping. I power through every day because I know its what I have to do. I cannot afford to live off what disability would offer. I help my mom pay for her house. But I'm tired. Its something that doesn't get better with sleep. (A fun fact of Lupus is that sleep is not restorative like in healthy people. I recharge probably 25% to someone else's 100%) I mentioned my mom in the first part because as loving and amazing as she is, she always compares my journey to hers. She uses her experience to tell me why I'm not doing enough. That its not enough. That I'm essentially letting her down. I've told her so many times that its hurtful and unfair. I can't get it to stick. I'm thankful her illness is not as severe as mine. She has enough other shit on her plate. But when I am entirely honest with myself about how I feel daily... I'm terrified to keep living. I don't want to be that old man gnarled over his walker in agony. To need to be in assisted living. I couldn't even afford that anyhow. I don't have kids or a partner. Who will look out for me? I'm already getting forgetful. I'm so behind on some medication plans because I simply cannot remember to take them. I forget to change laundry over when its in the same room as me. It is scary stuff that I just push out of my head and wall off. My anxiety makes me terrified to die and my body makes me not want to live. Its a vicious mingling in my soul. Maybe that's why my emotions have shut so far down. I live now to make sure my mom is taken care of in her golden years, because she did it so selflessly for my grandparents. What after? What purpose, to what end, for me?

I don't expect to feel healthy and "normal" again. I just want some hope. I'm just not sure where to find it. I'll keep looking for as long as I am able, though. Keep working until you cannot.

[anothergirlrecovering]

Lynn 79

I'm like honestly surprised that I didn't end up crying today. I got there and had to use the restroom but somebody was in there so I was standing in the waiting area and Lynn came out and invited me in so I just went in. She asked me how I was doing and I said good and I asked how she was. She said she was good, and we both sat down. She asked how my week has been and I said I don't know but that it's been kind of on the rough side but that we could start with something that's kind of happy. She was like OK and I was like I did something kind of impulsive but kind of not impulsive because you know that I don't do anything impulsive and she was like what is it and I was like I booked a flight to New York and I'm going to stay in the city with my brother and just see if you Broadway shows. I joked that if my husband could spend 1000 bucks on hockey tickets and Shirley I could spend a few hundred on just seeing Broadway shows. I told her about how my brother's girlfriend apparently is a professional dancer and is into yoga and is vegan and really likes theater to so she said she would see if you shows with me so that's kind of my plan at this point. I told her that I was anxious because I hadn't told my mom yet and I'm not really sure how she's going to take it because I'm not planning on going to visit my parents but I think that maybe I will ask them if they want to have dinner with me in the city one night. I told her that I booked the same flights that she had told me about through a small airline and she was like yeah some of those prices have gone up for the summer and she said united had flights for $200 round-trip and I was like oh well that's good to know but I already just booked mine LOL and it was $200 so I guess it worked out. She said that she was looking up flights for herself and playing around with it and had found those tickets, but she said that sounded like a really good idea and a nice vacation for myself. I said yeah but we will see how this goes with talking to my mom about it. I told her about how I went to the dentist and got really upset about my enamel being messed up and how I went on this shame spiral of how I've fucked myself up and how on the car ride there I was thinking about how as a kid when I would go to the dentist I didn't mind the dentist but I knew my brother was terrified of the dentist and so he got to go to the special pediatric dentist where there was like candy and video games and toys and even though he would have tantrums and be terrified my parents went out of their way to take care of him and that honestly makes me mad because I was like you know that that's not how it was for me when I was scared about anything. Lynn nodded and I was like I don't know it's just really frustrating because and Emily is something that will never grow back I mean there's treatments that they can do to help hard in the enamel but once it's gone it's gone. I was like and I mean the other big thing is that my husband and I had a huge fight last night. I explained everything that happened and I tried to explain that I was shitty and I wasn't supportive and she was kind of like I mean you have it in you you're compassionate for your clients so maybe you just need to reframe it. I explained that my husband pointed out that I'm essentially just mirroring my parents behavior with being crazy and rigid and upset sieve about health concerns and I don't think she really grasp exactly what I meant per se but she pointed out that while my parents are extreme, there is some truth in what they believe as far as it is good to do your own research and it is good to look at changing your diet or seeking out alternative medicine. She said anytime she has clients who have autoimmune diseases she refers to alternative medical practices because it's not a hard fixable science and it's always complicated to treat so the more things you can try to figure out what works, The better. She said that she thinks all of it is connected and what you eat is obviously going to influence your health and that her husband also has some health issues with really bad asthma and allergies and things like that and that she will occasionally be like you don't think it has something to do with the Lucky charms when he is complaining about his health and she was like you know maybe your husband isn't receptive to things like that right now and maybe he will eventually but that's his stuff to figure out and you can't control him. And I was like that's the problem is that I feel controlling and that I want to control what he does and she was like well because you care and I was like yeah but what I'm doing isn't exactly helpful and she was like exactly so you need to stop acting on what you were feeling and just be supportive. She said that she doesn't think there is anything wrong and what I am suggesting but that if he isn't receptive to hearing it and then maybe I need to take a step back and just let him work through it on his own. She pointed out that my husband has a lot of trauma and like I know from the ace study it's possible that his auto immune disorder might have been caused from all of the chronic stress in childhood. I hadn't really thought of that but it definitely made sense and she said that her friends son had a lot of allergies that were severe and several near death experience is as a kid and now at 18 he developed vitiligo and they said that any time a kid gets it that young it's almost always because of chronic stress on the body. I honestly hadn't thought of it but it would certainly make sense. She pointed out that that kid having had so many near death experiences was definitely under a lot of stress throughout his life and given all that she knows about him it makes sense. I tried to explain that it was my fault for the fight but she pointed out that he didn't respond well and that I was obviously triggering something that was extreme and caused him to act more like a little kid version of himself with kicking the table and saying he hates me and believing because she pointed out that that's kind of something that a little kid would do you where they say they hate you and then they run out. I was like I guess that's true but I still was not being supportive and she was like well that's something that you can work on them and I was like yeah hopefully I'm trying and I explained that it just makes me so mad because it's like I know that my parents made me this crazy kind of person about all of these things and I don't know how to be normal about it and she was like well you are able to have compassion for your clients so maybe put yourself in that kind of Frame of mind and just try to remember that mindset and act as if you are trying to be compassionate for a client because I know it's in there because you obviously care about him a lot and I was like yeah and that's why am so crazy about wanting to make sure that he gets real quality care. She also suggested that I consider just not even talking about his health issues with him and I was like yeah we decided that would be for the best anyway. She said she thinks that he's projecting his fear on to me and that's not really fair either and she thinks this isn't really about me as much as it is that he's afraid and she also pointed out that a lot of times people do not want to except responsibility for themselves or the work it takes to actually change and she pointed out that look at diabetes and how we have like 70,000 people a year have to have limbs removed because they won't change their diets. She pointed out that things would have to get bad enough for him to really want to do that change but I can't do it for him and I can't force him because that will only make him mad and not want to do what I have to say anyway. I was like yeah that's true, I would just hate for it to continually get worse for him to get to a point where he realizes he needs to do things differently. I told her about my friend Meaghan's husband who has it and every three months he has to go get his levels checked and adjusted and if he misses his appointment and it gets pushed back a few weeks he always ends up either super depressed or super angry and raging and they have to try to get it level again. She said she hopes that he does something sooner than later then and I was like yeah, and she was like so is that it? And I was like yeah and she was like so not a bad week and I was like I mean those things all felt pretty bad and like my husband has never told me that he'd me before and she was like so that's a bad moment but that wasn't an entirely bad week. She pointed out that a lot of times we obsess over the bad moments and Forget the positive ones and completely overlooked them and forget that they all pass. She read me part of an article on boundaries with narcissistic parents and she was like I read part of this to my daughter yesterday and I was like why are you a narcissist and she was like no but this part about boundaries was really good and we all need to learn how to have boundaries with people in general and I laughed and was like OK. She was like so the article specifically about narcissistic parents and I was like well my parents that I have some of those traits and she was like yes they most certainly do an article was good and she was like I'll send it to you so you can read the whole thing but it's about having those parent boundaries. I said also that my period came for days early and that hasn't happened since like 2016 so I don't know what was happening but I was very emotional and really struggled with self harm thoughts but that I literally did anything and everything I could to cope hopefully and I didn't do it and she was like well good and said how it takes time but the more time I spend redirecting my behavior when bad thoughts come up, the more my brain will re-wire itself to not respond that way. I could tell that Lynn was looking at the clock like we didn't have enough time to do EMD are, so she went with the route of figuring out a preparation plan for taking this trip and talking to my mom about it. She suggested explaining to my parents that I work a lot and that I want this trip to be more like a vacation which I was like honestly Lynn when I come visit them they always plan things for us to do so I think they would actually be offended. She was like oh OK that makes sense, bad example. She was like well you can say that you are going to be spending time with your brother and his girlfriend and she asked if my parents like his girlfriend and I was like LOL he hasn't told them that he has a girlfriend and she just burst out laughing and was like oh my God the two of you, you both could have your own little club and I was like yeah I know. I was like I don't know if he's waiting to tell them because he doesn't think it will last and she was like wait does he like her and I was like honestly I don't really know. It hasn't been very long and initially he said she was super crazy. Lynn was like oh good you get to play therapist for the weekend and I was like no definitely not LOL but I was like it sounded like it was just with being jealous and that she like freaked out about my brother hanging out at their apartment when this other girl was there waiting for her boyfriend to get home and they've been friends for like a year and that he basically said the boundary and was like listen if you don't stop acting crazy then we can't date and she had cried and he was like you've literally known me for two weeks like you shouldn't care about me this much LOL. She was like oh OK and I was like yeah so if my brother tells my parents about his girlfriend then I can say something about that but I'm not really sure when he's planning on doing that so I guess I can ask him. I told her about the idea for just like a Sunday dinner and she was like that sounds like a good plan. She talked about me preparing to have anxiety while I make that phone call and I was like I mean can I just text her and she was kind of like well I mean you can and I was like I just feel like that would give me less anxiety and she was like well then text her, maybe keeping it less emotional is the best. She pointed out that I could always make my text sound like I'm excited to have dinner with them and excited to go to the city and see shows and make it sound very positive and I was like yeah and then if she goes all Debbie downer and nasty I can be like if you aren't going to be positive then you can't hang out with me and she laughed and was like yeah that's exactly what the article was talking about and I was like if only I had the courage to say something crazy like that. She pointed out that my husband is supportive of the trip right? And I was like honestly he wasn't and she was like really why? And I was like well when I first told him that I was thinking about it he was like not thinking it was a good idea because he knows it will start a huge fight with my parents and she was like well I guess that would fit for him to feel fearful especially with your history and I was like yeah. She pointed out again that it's better that I have these really difficult conversations now than later once I have kids and I was like well honestly they might be better once I have kids and she was like why and I was like I don't know because apparently they've become the perfect parents now that I'm not there a little kid anymore and she laughed and was like salty LMAO. I was like just a tad. I was like who knows maybe they learn something sitting through those parenting classes that the county made them due to be foster parents and she was like yeah that's true maybe they have and I was like my mom said she didn't know she was supposed to spend time with me and now I'm just like what the fuck how was that not into it if they should spend time with your child? Isn't that intuitive? And Lynn was kind of just like I mean it should be and she was like well we know for sure your parents are going to try to be controlling over your kids food and I was like you know what I would expect that but at the same time they didn't do that for the foster kids and she was like wait for real? They didn't make them be healthy? And I was like no they kept the junk food in the house and stuff but I think it's because the county had suggested they keep food that they are familiar with in the home and she was like oh well Doug that makes sense they would Buy junk food because the county basically told him so and also because you can't really start foster kids or you might get in trouble and I was like I mean yeah I guess there's that but now that they've been adopted they make healthy food and they've just figured out which healthy foods the kids like because they still come to visit and these kids are super weird and love salads and fermented vegetables so they always make that and Hannah likeloves cooking with my dad so he calls her his little chef and she helps him cook in the kitchen together and laying could tell that I was being salty again and I was like yeah it's actually really fucking cute it's just annoyingly whatever because that wasn't me as a little kid but it could've been. She asked me if I can predict how my mom will respond and I was like honestly I don't know because remember she said she's not holding in her feelings anymore which Lynn left and I was like so I don't really know. I've never done something like this before so it's hard to know how she will react. She could easily go off the handle because this is so quickly after Mother's Day which we know was a shit show, or she could take the passive aggressive route and make a few backhanded comments. She suggested that I really make sure that I have my support circle ready to go in case of the conversation with my mom about the trip goes poorly and she suggested telling the people from my church group. I told him that I would and I was like you know honestly I don't think I realized just how abnormal my parents behaviors were until more recent years and especially lately, like even with Mother's Day that phone call with me I ended up crying and feeling so horribly guilty and sad and it was like this terrible I've fucked up three mothers days now and it's all my fault but then every time that I've told somebody that story, which I've told my therapist and the church group and my husband and book club, I'm still surprised by how people react because they're always like wait she seriously said that him was that artificial? And I'm like kind of Floored by the fact that other people recognize immediately just how crazy that is. Lynn laughed and was like tell them the story about her pouring out half of your milk, that's my favorite mom story of yours that you've told me and I was like oh my God, but honestly that felt so normal and she was like I know it did that's why you acted like that was normal the hallway that you even told me that story was casual and as if that was just another common story to tell but that's so abnormal and crazy to think that she really felt like she could Control you that way. I laughed and was like you mean you wouldn't try to control your daughters calories by pouring half of her milk down the drain? Lynn laughed and was like I'm pretty sure my daughter is with slug me if I even attempted something like that, or if they would pack up their bags and be like I'm leaving. She asked which shows I want to see him and I was like I don't really know I feel like there's no bad shows and she was like yeah that's true, and I just didn't really feel like explaining my process of rushing dear Evan Hansen and the whole ticket booth thing but whatever. She said she was excited for me and that it was a great idea for a relaxing little trip. She talked about scheduling and how this month is still kind of weird until the last week and she was like well we could do the day after you get back from your trip or that week after and I was like well I guess we should do the day after just in case if things go bad with my mom and she was like yeah that definitely sounds like a better plan. So we scheduled for that and we will stagger having that following week off and I will see her the last week of the month. I paid her and asked if she was still billing my insurance and she was like yeah why is it not going through? And I was like no it is I think I was just making sure because you had brought up not billing insurance anymore and she was like oh no that hasn't happened yet but I would definitely let you know in advance. She said that she is thinking maybe the fall but is going to give everyone a letter with three months notice and I was like OK well that's nice. And I was like the fall, so a.k.a. once my deductible has been met and she was like oh man I'm sorry maybe I can push it out a little bit.