For most people, dancing to 3 songs at a wedding is no big deal and something often taken for granted, but for this gal it’s a HUGE deal.
Today at Ben & Annie’s wedding, I was able to dance for 3 whole songs throughout the night! #Progress
A year ago at David & Teresa’s wedding, I couldn’t even dance for a full song.
I’m looking forward to 4 or 5 songs at Andrew & Lianne’s wedding in March.
I still experienced pain throughout the night and I’m now physically exhausted, but I’m so thankful that I continue to fight for the life I want to live and have refused to let #lymedisease discourage me.
Hydration therapy has become such a vital part of my life. At first, I was nervous and scared to go out with my pile and bag, hooked up, in front of people. I didn't want to make people uncomfortable. And I didn't want the judgment. However, it is always a blessing to goo out with it!! People ask me why I have a catheter in my chest, why I am walking around with fluid going. On days like today they also ask why I lie in the floor with my feet up in a chair, haha When people ask me questions, I get to share about my illnesses and encourage and empower people through it. I get to share how God is always present. I get to share that God is able to bless us, even in the midst of our circumstances. I get to be living proof that or circumstances do NOT determine our joy. I am BLESSED to be going through life this way, having an opportunity every single day to let Jesus inspire someone through me. I hope I never lose the beautiful opportunity to help change lives like this. It is so gratifying and humbling. 💛✊
Heaviest I’ve been without being pregnant or lifting weights. I can’t say I’m happy with the number however I seem to carry it well (except in my face but I blame the high dose prednisone for that) I saw a dr last time I was in the hospital and I hadn’t seen him since 2015 . He’s like you look great. Apparently 115 was just a little too thin. Anyway I’ve had these shorts for years and still fit in them so that makes me happy. Being a “sloth” doesn’t so looking to see how I can change that.As my hematology/oncologist told me “ you’ve got to get active (easier said than done for my body) #chronicillness#chronicallyfabulous#almost50#momof5#fighter#fighttogetfit#workingmywaytogetfit
The new ‘My Altered Body’ is my other zine geared towards disabled/chronic queer cuties, care givers and allies! It addresses living with: invisible functional disabilities/ableism, chronic illness, chronic pain dysphoria, trauma, having a body that feels like an enemy and being a survivor, through a bi queer gaze! I hope some chronically fabulous femmes and other folks can see themselves in these pages and know they are not alone! Available today at @printedmatter_artbookfairs , @momaps1 , at the @justseeds table on the second floor!
Or Venmo if you can’t make it to @elektra-kb $20 /// Price for the disabled, chronically ill or low-income immigrants from: Latin America, Africa or Asia is $10 (Below cost price). Price for strong desire and shallow pockets is a $15-$20 sliding scale. (Or DM me for punk style well concealed cash)
Numbered edition of 100, letter press cover with 34 color pages, digitally printed.
5 1018 hours ago
Yep, this is how to do it 🙄
8 1478 hours ago
It’s officially the first day of FALL y’all! 🍁🎃 ☕️ 🍂🦇🌙🍁!!
For every sick person, every chronically sick person... for everyone whose been told to just ‘change their diet’ to get rid of crippling and life changing symptoms... I drew this with you in mind... the amount of times I’ve been told by complete strangers to change my diet, to do yoga, do Pilates, be vegan etc etc it’s completely unfair to say that to me, I have no control over my body... it fucks itself up and I’m along for the ride. So, have an avocado - because they fix everything apparently 🙄 #chronicallyill#chronicallyfabulous#invisibleillness#invisibledisease#sickness#idontlooksick#avocado#drawing#drawings
This afternoon was full of Rx-filling stupidity.
However, thanks to the help of family, adaptable clothing, and sensory tools, I was able to get my medication, not experience more pain, and not have a meltdown.
A trip that should have taken half an hour took two hours because of negligence. If I hadn’t been wearing clothing right for my body, if I didn’t receive a ride from my family member who drove me all around the neighborhood, especially on a reduced dosage of one of my meds, I couldn’t have made it through it. 💿
This is why it’s so important for me and all disabled people to have clothing right for our bodies, and why we need new laws around opioid pain medication to protect long term disabled/chronically ill patients who use them responsibly. 💿
We shouldn’t be treated like criminals, and we shouldn’t be in the position to not be able to have access to the medication we need to survive. Yes, there are clinical ways to describe who uses medication responsibly, and if those people ever commit a narcotics related crime, then they should be punished. However, they should not be punished for what they haven’t done or what society feels like they COULD do. 💿
It’s unclear what really happened, so I don’t want to point fingers, but it was f’d up. Someone dropped the ball. I almost had to visit an urgent care, and had I visited one more pharmacy, I could have gotten flagged by the state and blocked from filling Rxs. 💿
If you’d like to help create positive change, call your local representatives and tell them disabled patients who responsibly use narcotic pain relievers as their only medicinal option need new law to protect them at pharmacies, deserve to be able to refill their medication electronically, and pain management visits should be reduced to every other month for patients who aren’t well enough to leave the home consistently. 💿
If you’d like to help me afford adaptable clothing for the Winter so I can be warm and comfortable, please see the link in my profile.
6 2069 hours ago
Spent my night crying hysterically on the toilet because of Bile Acid Malabsorption 😭👎🏻
So you may be thinking what is bile acid malabsorption?
Bile acid malabsorption (BAM) is a condition that occurs when your intestines can’t absorb bile acids properly. This results in extra bile acids in your intestines, which can cause watery painful diarrhea.
Bile is a natural fluid your body makes in the liver. It’s necessary for proper digestion. Bile contains acids, proteins, salts, and other products. The common bile duct moves it from your liver to your gallbladder, where it’s stored until you eat. When you eat, your gallbladder contracts and releases this bile into your stomach.
Once the bile is in your stomach and small intestine, the acids in the bile help break down food and nutrients so your body can absorb them efficiently. In your colon, bile acids are reabsorbed back into your bloodstream so they can be used again.
From time to time, the bile acids aren’t reabsorbed properly, leading to BAM. Too much bile acid in your colon can lead to diarrhea and watery stool, which is why BAM is sometimes called bile acid diarrhea.
Basically it hurts a lot. Hopefully my new medications will help and if they don't it may mean I will need a ileostomy in the future, as I cannot live like this 😭
After an awful night and morning with pain... I decided to get out the house to go shopping with my Mom to buy a white dress for a work party... I ended up buying several shirts, dresses, jeans and skirts and a jacket but no white dress 🙄🛍🛍🛍🛍 I do feel a lot better now though! Sometimes making yourself get out the house and do something is the best medicine, as it takes your mind off the pain. Plus I love any excuse for some girl time with my Mom ☺️💛