#eds

MOST RECENT

he’s NAKEDDDDD. he did well at barnes and noble today. i heard a family explaining to their very young children about service dogs, and two young children asked very politely to pet him. also, at petland when he was off-duty, he found and adopted a young girl and did the MOST to flirt with her. his down stays are getting much stronger too!!

Developing POTS, and learning how to deal with it, was the single hardest thing I’ve ever had to do. But working to recover from a lifetime of codependency was the second. ❤️ I’ve come so far this year with weekly counselling. I’ve been single (by choice) for over a year, I’ve grown a lot in my identity, have maintained healthy boundaries (until this week), and have learned to accept and love myself. But this week has been a hard one. I hate relational conflict. I feel guilty for expressing my emotions and often overapologize for asking for respect and setting boundaries. This past while has been filled with relational discomfort for me. 💔 An old toxic friend reached out wanting to repair things and I had to kindly explain why I couldn’t let that happen, a really toxic ex called to apologize a month ago (it’s been over a year) and I felt anxious the whole time (it was a healing conversation but that door will remain closed), I expressed my sadness to a dear friend when I was upset that she hadn’t asked me how I was doing in a few months, a couple people I were mentoring were self-sabotaging and I wanted to “fix it,” and yesterday, I got overly involved in a situation to defend a friend. The first 3 examples were necessary but they had me so out of my comfort zone, filled to the brim with unnecessary guilt, that I resorted to old “fix, save, and rescue” coping (unhealthy) behaviours. 😞 I’ve felt intense shame for 24 hours and want to hide myself in my room and isolate myself from the world. That’s when I had to remind myself that shame cannot exist when talked about (Brene Brown). 🙌🏼 I value authentic vulnerability and knew I wanted to share this rut with you all, I just didn’t know how to word it. (Tw: brief mention of abuse 2x without details) When you experience narcissist abuse for your entire life, you often find yourself feeling empty, worthless, and incapable. {more in comment section below ⬇️}

Co-chillin tonight is just what these hips need. House clean, dishes done, kid at camp. And I have the house to myself. Pain is horrible but I got this only a few more weeks until I see Dr. Reichert and scheduling for my port placement Monday plus Caiden gets his braces off woohoo! Lots to do so resting up for a long week. #scleroderma #ehlersdanlossyndrome #EDS #crestsyndrome #chronicillness #chronicpain #spoonie #IGAdeficiancy #gastroperises #needanewhip #zebrastrong #GERD #fybromialgia #purplehairdontcare💜💜💜

Today is my 6th wedding anniversary. I have so many thoughts about this milestone; every year is significant, but this year we are honoring one another in really uncomfortable ways, so I’m going to commemorate this day in an untraditional way. Jason is working a second job right now, on top of his full time job. He doesn’t rest, he works easily 20-30 extra hours a week, making for a 60-70hr work week. If you’ve been following our story, you know that I have a degenerative health condition called Ehlers-Danlos Syndrome, and I am a stay at home mother to 3 children. So between the two of us, we are each working harder than we ever have. Every day I make calculated decisions; the harder I push myself, the higher my risk for speeding up a degenerative process. Because of this I must work hard at taking it easy during my long hours alone with my girls. I must delegate and try to find help, so that I do not do irreparable harm to my body while my husband is working hard to help us fund my medical expenses. Ironic, right? If we aren’t mindful, we could find ourselves in a downward spiral. This has pushed us to work harder in our marriage than every before. I have never laughed more in my life than I have over the last year. To be frank, my health poses a lot of challenges, from our social life to our sex life, and it has challenged us to communicate better and become more vulnerable. I am sharing an unconventional anniversary photo, because my husband has worked all day, except when he let me take a nap, and when our sweet friend came over and gave each of us a massage. This is love, folks. Love works itself to the bone, but it also rests. Love takes five to cool off, but it also doesn’t beat around the bush or play small. Love works long hours, but is also sits down and plays go-fish. This year has been the hardest year of my life, but also the best; because of love. Happy anniversary to my partner in all things. #marriage #marriagegoals #anniversary #honoryourspouse #truelove #vulnerable #strongmarriage #tulsa #6yearsstrong #ehlersdanlossyndrome #eds #connectivetissue #degenerative #hardestyearever #bestsyearever

#fujeff I am medicating legally #ommp #AutoDab #ComplianceCase #AutoOff ....
#eds #mthfr #ms
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#HighTolerance #MedicalMarijuanaPatient
it’s my medicine it’s all I can take with my genetics.
#istandwithalexis #StandWithMe

“Salt is my weapon - Gravity is my enemy” love my new shirt from the #dysconf2018 Meeting new people and hopefully making friends makes me so so so happy😭💗I’ve lost most of my friends after getting sick so I’m all open to making friends!!! Never feel alone, I am always willing to talk if anyone needs it💓
#eds#pots#posturalorthostatictachycardiasyndrome#ehlersdanlossyndrome#zebrastrong#chronicillness#spoonie

Hey guys! I had a really fun night tonight. I’ll post it on my story since it’s kind of long though. I hope everyone has a good weekend! •


#chronicillness #chronicpain #chronicillnesswarrior #endometriosis #migraines #asthma #pots #pain #celiac #gastritis #ehlersdanlos #raynauds #endowarrior #eds #endometriosisawareness #invisibleillness

Today was the boston #walkforvictory .. I attended under #teamzebra ! I did my first attempt at zebra stripes and feel pretty happy with it ! #zebranails #eds #edswarrior

Thanks NDIS for finally approving my new sport legs, there’s no way I could have afforded them myself. They were custom made in America and make my gait better than it’s ever been - plus they have shuttlecocks on them 🏸👌🏼 #ndis #grateful #paraathlete #edsathlete #ehlersdanlossyndrome #eds #parabadminton #parasport #AFO #propulsionAFO #nowtoconquertheworld

Last week I asked y’all about some topics you might want to hear me talk about. So you asked for it, let’s talk about college! (Enjoy this photo of me on the last night in my dorm)
I attend an incredibly small private school in Los Angeles, my entire school has about 2,700 students! I’m studying psychology with an emphasis in child development and a minor in criminology. If everything goes as planned, I will be graduating in May of 2019 🎓🙌🏻
As a freshman, I had NO idea what I was doing. My mental illnesses (watch for another post on this soon!) and my undiagnosed physical issues were escalating. I went in as a bio major trying to take 21 units, and I essentially set myself up for failure. I took a W in 4 classes and ended with C’s and B’s in the rest. My second semester, I changed to a psychology major but my my mental and physical issues were still out of control. I took one more W, failed one class, got a C- in another and the rest were B’s. I got put on academic probation and my financial aid was being threatened
So how did I go from academic probation to the dean’s list?
First, I started taking classes that I truly enjoyed. Getting myself to class is easier when I enjoy it. I took almost all of my GE classes online. Let’s face it, I’m not interested in economics or art or a lot of the other required classes. Taking them online made it so I didn’t have to spend the energy sitting in class. I start talking with my professors before shit hits the fan. I make sure they know what’s going on, how it influences my work and how they can help. Generally my professors are super helpful and that’s part of being at a small school. They’re less overwhelmed and have more time to learn about each student and care about them. Finally, I have to know my limits. I don’t go to parties, I’m not in a sorority or extra clubs. My energy is focused on school and working in the field.
Interested in what I want to do in the field? Watch for my post tomorrow! •




#spoonie#invisableillness#butyoudontlikesick#disabled#disabledandcute#chronicillness#chronicillnesswarrior#mcad#mcas#cfs#eds#ehlersdanlossyndrome#pots

Today has been BUSY for me and Galey Girl! We did about two hours of training in the mall, which was very crowded. We stopped in PetSmart to grab a few things. Then we took a nap because I was exhausted. THEN we took a walk around our neighborhood. To finish up the day we went to Rita's for some frozen custard! Props to our local Rita's for knowing the 2 questions 😎 for the rest of the evening we will be chilling, self caring, and watching Bob's Burgers!!🍔#assistantdog #bordercollie #bordercollierSD #psychiatricservicedog #intraining #galetheBC #ehlerdanlos #EDS #medicalalert #girlsbestfriends #lifeline #imalleyes #mentalhealth #endthestigma #depression #OCD #generalizedanxietydisorder #panicdisorders #BP2 #bipolar #PTSD #noncombatPTSD #borderlinepersonality #invisibleillnesses #mentalillnesses #spoonielife

Re-purposing the mason jars from the wedding! One of the ways I am repurposing them is to paint them to put succulents in them. My new sister in law and I painted them and she made a pretty emerald polka dotted mason jar. Such fun! #masonjar #masonjarenthusiast #sisters #paintnight

#livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife .
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#rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure

#eds #ehlersdanlos #ehlersdanlossyndrome #edstype3

#dysautonomia #fallrisk #pots #potsie
#lifestyle #lifestyleblog #blogger #blog #happiness

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