the--social--anarchist

[the--social--anarchist]

June 9th 2021

A weird day and my plans went slightly a-whol but that's okay.

I woke up a tad early (10:15 am is early these days) and was pretty excited about that. I was really exhausted though, so I don't know why I was surprised I slept for 4 freaking hours when I laid down at 2:30 pm for a nap.

Okay, to be fair, it took me a long time to fall asleep. In retrospect, I should have waited to lay down, but I figured if I laid down then I would be back up by 4:30 because I usually nap for 1.5-2 hours.

So basically, I was abducted by aliens. Ha, jk. Chronic fatigue took me away 😭

Anyways, since I literally slept till my husband came home I decided to say F cooking dinner and he went and bought rotisserie chicken and salad for dinner. All the chicken is dethawed so I can cook it up tomorrow. I need to do a small grocery shop anyways. Mostly for produce.

I still managed plenty of chores today. Monitored Moxie like a hawk and she had no accidents, although I caught her peeing AND pooping on the driveway so, time to call the vet 🙃 And I also got a ton of work done on a special project I'm doing. 😉

Tomorrows priorities are food prep. Calling the vet. Calling the hospital about my records. Special project.

[the--social--anarchist]

June 7th 2021

Technically June 8th because it's 2:30 am but whatever.

After a good 3 days, but stressful 3 nights (Christian and I ended up in some sort of deep and exhausting discussion the past 3 nights) we finally had a more relaxed day and evening. Thank fucking God. I was at my limit.

I did major spontaneously stress shopping on Amazon last night while I was in my feelings 🥲 Like, didn't even remember what I bought when I woke up the next day. Everything. I bought everything.

We both got some much needed haircuts today. And I left with a TON of goodies from my mom. I came home and did an exfoliator, face mask, hair mask, lotioned myself up and feel properly pampered. Next step is picking a new shampoo and conditioner, and a new hair color!

I am thoroughly excited for all my new things to come in the mail tomorrow (thank you Amazon prime.)

This is the first time in my life I have the means and where-with-all to be "selfish" and I am not feeling sorry about it. By selfish I mean setting my boundaries, doing what I want, what I need, and actually taking care of myself. I'm not neglecting anyone else or my responsibilities, just putting myself first.

10/10 highly recommend.

#Treat yo self #Update #June 2021 #Summer 2021 #Self care #Self love

[the--social--anarchist]

Hi! I saw your post about seeing a geneticist (not sure how old it is) and since it seems I’m in a similar boat, I figured I’d mention the Undiagnosed Disease Network. If the geneticist doesn’t/didn’t yield anything (hopefully it does/did though), applying for the Undiagnosed Disease Network could be a possible next step (if you want and all that). Good luck!

Thank you so much! I don't even know how old this ask is 😅 I'm so sorry. But I did find my diagnosis in March of 2020 and now I go annually just to touch base! I was diagnosed with Hypermobile Ehlers Danlos after all other types were ruled out 🙂 🦓 🌈 💕

#ehlers danlos syndrome #hypermobile ehlers danlos #Hypbermobility #Anon

[the--social--anarchist]

05.30.2021

I am starting to find myself again and remember what I need to feel good.

The easiest thing to address is not feeling myself when I look in the mirror.

I hate my hair. I stopped getting it done because it hurts my head and neck terribly to sit in the salon. So I let it grow out natural, and I've tried to rock it. But it's not me. I've scheduled a haircut, and am going to try semi permanent dye I can use at home. My mom (who is my hairdresser) will probably have an absolute stroke about me putting boxed dye on my head but, whatever. It grows back. I really miss being able to wear makeup and jewelry. And while I don't have a solution for the makeup (yet) I do always try to have my nails done, and I've decided to finally budget for some tattoos.

I've also started reading again. Amazon Prime Day is coming soon and Christian and I decided to budget for Kindle Paperwhites. Memoirs are my favorite. But I'm trying to squeeze in some fiction here and there. Plus some research based books. And I need to dedicate time to write consistently. Because I am finally going to sit down and start writing my own memoir. And I want to publish it. It's been on my to do ever since my experience at rehab in 2017.

Lastly, I am taking more time to rest. More time to relax and enjoy my hobbies. And telling everyone around me to kick rocks if they can't understand that I am drowning in chronic illness bullshit, like doctors appointments, gathering records etc. It's a fucking job. Seriously, Christian and I accidentally TRIPPLE BOOKED doctors appointments for next week 🙃

My relationship with my husband is strong, and it anchors me to reality. I would be floating, so lost without my place here with him. We are a true team. I am so thankful to have this type of support from him.

So, hello Hot Girl Summer 😉

#chronic illness #ehlers danlos syndrome #invisible illness #hypermobile ehlers danlos #disability community #self love #self healing #rest and recovery #recovery

[the--social--anarchist]

I so often dwell on the fact that I don't have kids yet. But lately I have been working very hard to focus on the benefit of being childless in this time.

I've been in such an awful flare, and I've fought the rest so much, for no reason. Until this past weekend. I just gave into it. I slept and laid around. I let my husband do everything.

I'm trying to focus on the fact that I am extremely fortunate that we can afford to live on his income. That I can stay home and rest. That he loves me, and encourages me to rest. He doesn't mind helping at home when I need it. He loves driving me to appointments because it means more time spent together. He likes to take care of me. He was a crucial part of my recovery 4 years ago and continues to be a crucial part of my stability. We don't have kids right now, and he can afford to focus on me. I can afford to focus on me and my healthy. I can afford to rest.

I need to appreciate that and take advantage of it, because we DO so desperately want children and when we have them everything will be different.

So today I'm celebrating the fact that I slept until 12:30pm, did a ton of laundry, cooked dinner, made several important phone calls, and now I can grocery shop from under the covers until my husband gets home.

#ehlers danlos syndrome #hypermobile ehlers danlos #ehlers danlos problems #ehlers danlos zebra #Disability #Disabled #disabled life #chronic illness #chronic fatigue syndrome #chronic pain #invisible disability #potssyndrome #potsie #Gastroparesis #Mcas #Mcad

[the--social--anarchist]

Lately I've been looking at myself in the mirror and just staring into my own eyes trying to figure out where I went. I don't recognize myself and it scares me. I feel lost.

Aesthstically, I don't feel like myself.

Physically, I feel so weak. I'm in so much pain, and I'm so fatigued all the time.

Even artistically, creatively, I feel stunted. My hobbies feel lost to me. I go to start an endeavor and don't finish it. I'm either exhausted from pain or scattered.

Right now I'm working on connecting with my physical self, hoping it will lead me inward. I have been spending more time looking at myself in the mirror, especially nude after my showers. Not in a sexual way. I have never had a body image issue, but I do have a great disdain for my body as it fails me over and over.

I don't feel my outside reflects my inside and that needs to change. We feel our best when we look our best. At least I do.

And I read a book. A fiction book. I never read fiction anymore. Ever. It was still a true crime thriller, and I rolled my eyes a lot. But I read it l.

I need to read (not fiction) and I need to write. It is part of my identity, and I am lost without my research.

#ehlers danlos syndrome #hypermobile ehlers danlos #ehlers danlos problems #ehlers danlos zebra #chronic life #chronic illness #invisable disability #invisible illness #disability community

[the--social--anarchist]

I thought depression was supposed to make you sleep. I haven’t slept in a fucking week. 

I’m having a complete existential crisis and I don’t want to do anything. Like ANYTHING. I don’t want to eat, or play games, garden, clean - nothing. I literally just sit in silence and stare into empty space until the sadness fills the void and I break down in tears.  I think it started welling up before my gynecology appointment on Wednesday, but thats when it really just smacked me in the face. I can’t bring myself to go into full detail again, not that anyone even wants to hear all that, but basically this is where I’m at. I have Ehlers Danlos Syndrome, and I do not want to pass that down to my children, so no Bio kids for me. Which I am content with. I actually lived many years under the presumption I wouldn’t be able to have kids without undergoing IVF anyways, and foster care/adoption were always on my mind because of my background. However, I am once again heavily grieving the fact that I might be choosing to give up pregnancy. I’m so stuck. Just because I don’t want to have bio babies doesn’t mean I can’t use donated embryos and carry them. So, do I risk a pregnancy that just destroys my body and makes me incredibly ill? What if I’m never the same again? I mean, I’m constantly ebbing and flowing in my health anyways. But is that dumb? Should I just stick with the traditional adoption route and then risk the regret of not experiencing pregnancy and birth?  I don’t care how my kids are born to me. I don’t are about them being related to my husband and I. They will still be mine, I will love them the same. But as a woman, I lived my whole life expecting to experience a pregnancy, and now I have a very personal choice to make and I don’t know how to make it.  I am seeing my geneticist next week and am hoping she has insight and an opinion that will help me because right now I am just miserable.

#ehlers danlos syndrome #ehlers danlos problems #ehlers danlos zebra #hypermobile ehlers danlos #depression #anxiety #infertility #ttc #wttc #pregnancy #adoption #family planning

[the--social--anarchist]

An example of what I share on IG @thesocialanarchist

Hey guys, just a quick reminder. I am MUCH more active on Instagram

Follow me over there if you're looking to keep up with me and the pups more frequently! 😉🖤🤍🖤

#ehlers danlos syndrome #ehlers danlos zebra #ehlers danlos problems #Dysautonomia #potssyndrome #potsie #gastroparesis #infertility #Pcos #Polycystic ovarian syndrome #disabled #Disability #chronic fatigue #chronic illness community #spoonie problems #spoonie community #spoonie life

[the--social--anarchist]

Hey guys, just a quick reminder. I am MUCH more active on Instagram

Follow me over there if you're looking to keep up with me and the pups more frequently! 😉🖤🤍🖤

[the--social--anarchist]

Friday February 19 2021

We were supposed to be in Mississippi visiting family this weekend but alas, the country froze over. It's "warm" (aka above freezing) in Georgia, so we stayed home.

February marks the fifth month that my menstrual cycle has come on a consistent schedule (every 35-45 days) after a lifetime of irregularities and supposed infertility. I woke up in October with COVID and my period, and it's being regular ever since. Wtf. I know correlation does not equal causation but, I like to blame covid for stuff so, I blame covid.

Today Christian was in a 4 car rear end situation. He's fine. The car is fine. Zero damage to either. But it took up the whole day and we were both really pissed. Except very shortly after he got home he received a long awaited call about a job offer. He was offered the job! It pays SIGNIFICANTLY more than what he makes now, with outstanding benefits. Health, dental, vision, parental leave - the whole kit and kaboodle.

We are 4 weeks away from bringing home the new puppy and I am so in love with her (via pics and what the breeder has told me about her.) She should be perfect for the job we need her for.

I'm probably going to step back from my current position and take up something else from home. There's just too much we need worked on in the house. And my doctors visits aren't getting done like they should be with this schedule. Now that we have better financial resources it's more realistic for me to stay home and tend to my health, the house, the animals, garden etc.

Big things and big changes are coming in the coming weeks and I am so thrilled. 🥰

#Health and wealth #2021 #February #Ehlers danlos syndrome #Daily blog #daily blogger #Goals #ehlers danlos problems #dysautonomia #potssyndrome #potsie

[the--social--anarchist]

I forgot to post the puppies 3 week photos! We are still deciding on the name.

-Luna, Moxie and Dottie are in the running! (Luna seems to be the popular opinion but, I'm definitely leaning towards Moxie Mae.)

#ehlers danlos syndrome #dogblr #dogs of tumblr #australian shepherd

[the--social--anarchist]

Let me just tell you guys, I have been to the MAX overwhelmed with responsibilities and all the things. Just DYING for a fucking day off to slow down, relax and enjoy my life.. And my boss text me saying I don't need to come in tomorrow 🎉

I am so happy 😭

#ehlers danlos syndrome #ehlers danlos zebra #ehlers danlos problems #chronic fatigue syndrome #Chronic fatigue #Exhausted

[the--social--anarchist]

The people I nanny for insulated the space under their floor (in the crawlspace) and it helped maybe 10%. Baby and I spent most of the day upstairs. They are super kind and understanding and asked if I didn't want to come back but I said no, if they keep working on it we can make it work. I like them and I love the baby. They really like me too, but told me they don't want me to sacrifice my health (which makes me like them more lol.)

I suggested the next thing they do is fix up the weather stripping and caulking around the windows and doors. They are also going to insulate the space in the attic.

I know how costly this shit is, so like I said, I'm willing to work with them as long as they are working with me.

PS. I love taking care of that baby all day. Love. It. I was 100% meant to be a mom. Not that I ever doubted that, but being with a baby consistently to the point that he's started recognizing me as a caregiver has just really solidified it.

#Work update #Nanny life #ehlers danlos syndrome #ehlers danlos problems #ehlers danlos life

[the--social--anarchist]

Some of the areas being reworked. I'll post better photos when they are done 😊

[the--social--anarchist]

Yesterday (Saturday) Christian and I got a ton of small chores around the house done. Aside from basic chores we hug my dresser mirror up (4 months after moving in lol.)

I've ordered several shelves for the bathrooms and we started to hang those. I love them. I also ordered a shelf for the doggie corner we have by the sliding glass door. I can't wait for it to arrive. We are redoing that area to make room for the kennel for the new pupper.

We also did a lot of organizing in the kitchen. Cleaner off a lot of counter space, made room for dog food to go in the pantry etc.

And then today (Sunday) I just crashed. Chronic fatigue is fucking real and when it hit it HITS. I slept until 12, didn't get up until 1. Stared into space for a few hours trying to find my will to live. Gathered enough strength to make a grocery list and place a pick up order for tomorrow. And then I fell asleep from like 4 to 6:30? I'm not even sure. I was in and out all day. I didn't eat or anything. I felt like a zombie. A whole day just GONE.

I'm hoping I just really needed that rest and tomorrow I can be more productive. My sleep schedule fell apart again thanks to the weird evening shifts I worked last week, so I need to fix that.

Again, damn this fragile ass body. Lol

#ehlers danlos zebra #ehlers danlos syndrome #ehlers danlos life #ehlers danlos problems #spoonie community #spoonie problems #spoonielife #chronic fatigue syndrome #chronic fatigue #Cfs

[the--social--anarchist]

Chapter 1 of 2021 is officially closed.

It felt relatively uneventful but we did have some successes.

I found a new primary care doctor who I like. I found a job*. Christian had 2 interviews*.

We paid off the last several thousand dollars of Christians car note early which is HUGE for us. One step closer to living on one income.

And of course we found our new pup.

*My job is now in limbo. I talked with them about the cold environment and they are going to fix it but they need time. Probably a week or so. They really want me to keep working because they need to work (we all need to work!) but they really don't want to bring him here so idk what is happening now.

*Both interviews went well for Christian and he was offered opportunities for lesser positions that are still major pay raises from his current place of employment. The catch is those positions aren't open right now so he's on the short list and will be notified when they open up.

I'm managing everything fairly well but I do need to buckle down and make a few phone calls and doctors appointments for myself.

Health is just as important as wealth, Amanda!!!

#January 2021 #ehlers danlos syndrome #ehlers danlos zebra #spoonie community #spoonie life #spoonie problems #Dysautonomia #potssyndrome #Potsie #gastroparesis #Mcas

[the--social--anarchist]

I am burnt tf out.

Actually, more like froze tf out.

The people I work for have some sort of insulation issue with the main level of their home. It's basically the same temp as the outside (mid to high 30s here. I'm assuming it was probably in the 40s-50 inside that house) and after several evening shifts I'm officially a solid block of ice. I have no idea how they live there, but it's making me physically ill.

Shivering and shaking from the cold fucks me up so badly. Everything from my Raynauds to my headaches, muscle aches, nausea and more is intensified. I feel like absolute garbage. And I can tell the baby is freezing cold and doesn't feel great from it either.

It's become an actual problem and I'm going to have to say something this weekend before I go back. The reason I took this job was so my health would not be compromised, but alas. Here we fucking are.

Fuck this fragile ass body.

#ehlers danlos syndrome #ehlers danlos zebra #ehlers danlos problems #dysautonomia #potssyndrome #Potsie #Mcas #Gastroparesis #Chronic illness #Disability #Spoonie #spoonie community #spoonielife #spoonie problems