Oh, boy... busy life is a full life! I wouldn't have it any other way. Every piece brings joy and purpose.
1. A boy and his music. He's so excited to be learning the piano
2. College!? 🙃 I've taken correspondence courses before, but this a whole different ball game!
3. Butthole cat is being a butthole, trying to work me out of the seat he claims is his. 🤣
Combine those above with choir practice, fixing a drowned laptop (the eldest sneezed and drenched it with mint tea), harvesting at schools, volunteer teaching 4 days a week, doctor visits, plus getting a new job, and you'll have a peek at the life of me... somewhere there is art being created too! Hahaha.
I asked the universe for a break this week. Without going into everything, bits and pieces of my life seem to keep stalling. Upon reflection, though, I don’t need that break to lead a good or peaceful life. Practicing gratitude helps clarify what matters and what gets to “stick”. I’m grateful for my family. I’m grateful for excellent medical care, and that I’m fortunate enough to have insurance. I’m grateful for audiobooks and creative storytellers. I’m grateful for our online community, where differing perspectives coexist. I’m grateful for music. I’m grateful for Nora, even when she walks across my keyboard. I’m grateful for clean water and sunrises. The list goes on. Most profoundly, I’m grateful for the love I receive and my ability to love in return. 💚// What are you grateful for today? [Image Description: The words “Living On Love” are typed in a white circle, and the background image is a blue sky peeking through green foliage.] #livingonlove#livingwell#mitochondrialdisease#ehlersdanlossyndrome#dysautonomia#pcos#gastroparesis#hashimotos#endometriosis#chronicillness#gratitude#quotestagram
White chocolate and raspberry cookies, YUM 🍪😋
I used to love baking but over the last few months had stopped. Mainly because the chopping, stirring and mixing was causing a lot of finger subluxations and wrist problems, but also because I had 0 motivation or energy to find a solution
Turns out asking for a hand and baking with a loved one is far better (and tastier) than not doing it all😁
🌵🌻Still having trouble coming to terms with yesterday’s appointment. After years of trying to figure out what in the world was happening with my body I finally have an answer. Hypermobile Ehlers Danlos Syndrome. A genetic disorder that affects collagen, so something I can’t change. It’s crazy to think that after all this time there is finally some understanding to my autonomic problems, pain and as my ortho would put “stretching to pieces” body. I am determined to continue to work on my body to improve my quality of life and not let this condition continue to steal from me. 🌻🌵 #ehlersdanlossyndrome#hypermobile#goingtogetmylifeback
4 143 hours ago
Wow, been married 8yrs next month 😊 seems so long ago, we've had so much to deal with since, my wife lost her sight, had a stroke and countless others problems and me with the dislocations and all the problems that has caused but all its done is make us stronger! We are like a bad comedy on the bad days trying to help each other and always try to make each other smile no matter what ❤️💛💜💚🧡 #chronicpain#ehlersdanlos#ehlersdanlossyndrome#loveislove#lgbt#hypermobility #🏳️🌈 #fibromyalgia
What does movement and exercise variety do? 🤸♀️From a body perspective, varying your movement modalities creates the opportunity to build different types of strength, structural resilience, improve cardiovascular fitness, increase heart health, reduce joint pain, and more.
🧠From a brain perspective, there are other great benefits to varying your tools:
⭐️Various modalities can help you solve problems, be creative, improve focus and memory, reduce stress, and control both emotions/mood and cravings to name a few. .
Beyond the more apparent brain and body benefits, broadening your movement vernacular creates options and freedom: you may (unfortunately) find yourself unable to do One particular exercise or movement modality for a time due to life, injury, moves, etc.
That doesn’t have to mean loosing your sole form of output and changing things up carries great benefit to your brain and body alike! .
If you’re not sure where to start, DM us to ask! 📷 to Teal Burrell/Prevent Disease
2 453 hours ago
Stuffed dates 😍 the pistachio ones are my favorite.
Such a beautiful bright and glorious day today. I always love the smell of fresh mown laws wofting through the neighborhood such a nice start to the day. Today I headed into hospital to see my specialist physician who is overseeing my care at a local level. Waiting times as always were so lengthy and those terrible chairs all ways cause my body the worst pain. I thought today I'd resort to some stick on heat patches and prayed they would leave my skin in tact. Fortunately they came off OK only to leave redened and sore areas thank goodness.
My specialist is always thoughtful and considered in his responses and thorough and empathetic.
I finally made my way out of the hospital much to my surprise to still find the last of the days rays sill shinning down. ☀ A nice way to end a long and exhausting day.
(Images from a couple years ago...) Havent really updated really so I thought I would. Last week on Monday 9/17/18 in the late afternoon-early evening time I began having some severe neck & shoulder pain. I could mostly identify it when my c4-5 c5-6 herniated in my sleep a couple years ago. Images as posted was few weeks after it happened and when I saw a different neurosurgeon he explained that basically what caused this no known reason of a herniation was due to the EDS. But, I was lucky where the discs "sucked back in" like they often do and should. We talked about surgery but he was not comfortable to do anything drastic which was understandable.
Well, it happened again. I didn't see the neurosurgeon but I saw the doctor and shes rather positive I'm having cervical radiculopathy. However a week into it I'm having mostly just right shoulder pain where I'm now experiencing catching and popping sensations. Yet the other day it did lock up on me for a few minutes. I have had to take meds for it along with icing it 2 to 3 times a day and trying to not sleep on that shoulder.
Unfortunately I wasnt able to get an MRI on my neck last week so actually today, Wednesday 9/26/18 I go in for the MRI. I'm not getting my hopes up entirely for answers yet, any answer would be helpful.
I see my doc in a few weeks and if the shoulder pain continues I will be requesting an MRI of the shoulder. Even if there is a small tear, it still can be felt and be painful. I'm currently waiting for my doc to send a new PT request to a therapist I've known for nearly 8yrs, hopefully he can help as well help gain my strength back in all other body areas as I know my muscles have gotten weaker since my last 2 hip surgeries.
Also going to try aqua therapy once to twice weekly, crossing fingers my back will tolerate it and not flare landing me in more pain.
Once I know everything & the results from the MRI I'll post a new update.
So where have I been lately???? Here’s the answer-
Then & Now pictures!
They have gone through name changes so their official name is
1rst baby- DUCKIE! Yes from land before time. She may be tiny, but she is MIGHTY!
2nd baby- tortellini because she’s a tortoise shell and I feel like she’d be Italian 🤷🏻♀️ 3rd baby and only male is Mac daddy! Because he is literally a giant. TWICE the size of Duckie. He’s gonna be a big boy
Full time job but I feel like it’s helping my pots in a way? Idk lol
0 127 hours ago
💍 💖 La 1ere photo d'une magnifique série de nos photographes @moteuretaction. N'hésitez pas à les contacter pour vos photos de mariage, grossesse, shooting et autre événements vous ne serez pas déçu 😍
🙌🧡🧡🧡🙌 @thehealingfoodie - "R E P E A T T H I S M A N T R A. Just don’t write it on a post-it note
In 2016, I found out that my life was going to be much, much harder than I expected, forever. I found it out on the Internet. I was handed a small orange sticky note by a doctor with one word scrawled on it, and told to go home and google my disease. (This would become known as the second worst thing ever communicated to a person via post-it note after Berger dumped Carrie.) This doctor declined to tell me that the word she scribbled down was incurable, or extremely difficult to even treat, or had a high suicide rate. I was left to find all of that out alone, from a computer. There were many moments following that post-it note when I thought, “Screw it. If my life is going to look like this, I don’t want it”. That slowly turned into “Fine, I’ll live but believe me, I’ll be miserable”. And I meant it. I fully intended to be miserable for the rest of my life. But that slowly evolved too. Here’s why: Yes, my life is different now than I thought it would be. Harder. Definitely more painful. Way more planned out and not nearly as adventurous. But you know what? I only get the one (as far as I know). So I could sit here all day and lament all the things I wish were different, all the things I wish I had, some I wish I didn’t, or I can make the absolute most of it. I’ll take the latter option. There is NOTHING that can happen to you that can keep you pinned to the ground forever (barring, like, a piano falling on you from a high apartment window. Then forget determination, you’re gonna need a spatula). If you’re grieving, you might have to stay there for a while. I wish I knew why...I suspect it’s to learn things. But it will one day become easier to look for light than to insist on staying in the dark. I’m deciding to make a life I love. I figure I might as well."
The last few days I’ve had pain worse than I’ve experienced in quite a while. The kind of pain that makes you leak helpless tears. Last night my mobility was so compromised that I was having to use the walls to prop myself up on the way to the bathroom. That was kind of eye-opening, and makes me think some kind of mobility aid may be in my near future.
But tonight around 7 PM the pain lessened significantly (why? who knows! life’s a mystery!), and I felt myself start to smile again. And now I’m laying in bed after staying up too late knitting and enjoying my 3-4 pain scale, and dammit if I am not feeling super impressed with myself. I keep a five year journal where I write a short paragraph about my day every night before bed. I was just doing that and thought “how sad that so many of my entries are about my pain.” And then I thought, no, actually, it’s not sad. Because I’m recording all the shit I’ve gotten through and goshdarnit I have GOTTEN THROUGH SOME SHIT. I am one badass mammajamma. I go through pain that would make a healthy person call an ambulance, and I do it over and over again. I’ve lived with some level of chronic pain almost every day for four years. That is not something to sneeze at.
So you’ll excuse me if I take tonight to pat myself on the back. And I encourage you to do the same, because dammit if we aren’t some fierce folks.
We are warriors. Hear us roar.
[image description: Eliza is laying in bed with her head on the pillow, wearing glasses.]
It’s been a while since I posted here but basically the pneumococcal vaccine for my CVID seems to be wearing off and that’s a one time thing. My immunologist is having me get blood drawn to be certain but he says it’s most likely just a formality to hurry insurance along so I’ll be able to start immunoglobulin transfusions sooner. The transfusions are something I’d have to do for the rest of my life, and it’s looking like that’ll be the case unless some proteins are acting up for whatever reason and causing it. But I was sick for 3 weeks and I’ve had tests and assignments and my car got totaled and my laptop is broken and it’s been a bad month to say the least. Applications for nursing school open October 1 so I’ll be doing that soon too. Fingers crossed. Thinking about the future is what keeps me motivated. I know things can be better and I can help others get better too. Other chronic illness blogs keep me going too. There’s so many people facing tough circumstances and I can’t even imagine what it’s like to be in their shoes. My own problems are manageable because I’m relatively used to them, for lack of better phrasing. I assume things are the same for them but I have so much respect and love for anyone who fights with us. You are all doing amazing, regardless of how you feel right now. Stay strong warriors! Image description: Josie’s pale arm is shown from mid-forearm to mid-humerus. It shows the bruise on the inner crease of her elbow. #accessibility#imagedescription#eds#heds#ehlersdanlossyndrome#ehlersdanlos#hypermobileehlersdanlossyndrome#connectivetissuedisorder#immunodeficiency#commonvariableimmunodeficiency#cvid#cvidawareness#blooddraw#bruise#immunoglobulin