My pain feels so strong. The prescription lidocaine cream isn’t helping. I’m exhausted all day every day. And honestly I just feel like death. I even broke down and cried because I’m so tired of not being able to do what I want to do due to pain and fatigue. Just because I’m smiling doesn’t mean I’m okay.
PS I’m not looking for pity. I’m just trying to show the realities of chronic illness through my own experiences ❤️
Meeko, the food thief, the destroyer of glas. I can't imagine life without him 😍🙌🏻 today he's been taking my shrimps, poking me with a paw and taking my cake with the other 😂 after eating I sat down and got Dexter's lamb, bat and dino back to one piece. Dexter got so happy they're back! 😎 Had laundry again today, washing textiles. My back is hurting so bad as usual after cleaning/laundry and it is so much worse thanks to the 12kg heavy blanket I carried to the laundry room and back 🙄 soon time to sleep, tomorrow's another day with group walk and maaaybe some phototime 🙌🏻 #goodnight
1 639 minutes ago
Tonight I went to a quiz with @ribbon_wrapped_life and @rebeccas0phiestevens! It was amazing and our team actually came first place! And best of all, they had the trophy which me and Jade could take home since we couldn't eat the chocolate! It was such a wonderful evening and I'm so glad we went 💛
I'm struggling a lot with not being able to eat, and it's been a long time now since I was last able to keep food down 🤢. I see my dietician on the 23rd and we're praying so much that she'll have a new idea. I've also started a super rare antibiotic for my resistant infection and we're really hoping that'll help me feel less rough, also I've started scopolamine patches and so far they seem to be working okay. I've seen a tiny decrease in nausea but focusing is hard so I'll need to weigh up whether they're worth the side effects.
Other than the eating issues, I'm doing okay. I'm working hard to try to keep gaining strength, I have my new beautiful ADiT, Cookie 🍪, and I have all my wonderful friends to turn to when things are rough. Thank you so much to everybody who's helped and been there for me over the last few weeks especially, you know who you are and I so appreciate you all 💕
As always, I'll finish with some prayer requests. If you would like to pray for me, please pray that the dietician comes up with a plan and is well versed in GP so has the knowledge to help. I would love prayer for strength getting thru the right now when malnutrition seems to be messing with my emotions. Also prayer for my family to understand a bit more about what I'm going through as at the moment it's causing a lot of arguments and issues as they can't comprehend throwing up everything you try to eat, despite seeing me go through it. Thank you so much, I love you all! And well done if you made it to the end of my very long update 😂
Happy first day of the new year everyone.May you be content & healthy.Nothing fancy.Just do you.If you can manage to climb a literal mountain,that's awesome.For those facing other kinds of mountains,just take it one breath at a time or just wiggle your toes.That counts too💜 #HappyNewYear.
It’s such a sleepy little Saturday 💤
I’m tired after a weirdo seizure episode last night where I woke up digging in my backpack, knocked out and came to tired with my sternum sore and my head pounding.
1 28an hour ago
The best 10 Year Challange I have seen yet! @ehlers_danlos_tees strikes again!
Seriously... All Dr.'s, every single one of them, now say the same thing when new symptoms arise, ever since I have been diagnosed, "Eh... It is just your EDS. This is your new normal." That sums it up. Just deal with it... 🤷♀️🤦♀️🤷♀️
Remember my 🦓Zebras🦓... Doctors are just 'practicing.' 🤣 👨⚕️👩⚕️🤣
Beds and chairs available at our meetings!!! Such a pleasure working with these wonderful people. The EDS comorbidity coalition met today for our first meeting of 2019 to develop the EDS clinical care pathway for all types of EDS and HSD and all the related symptoms and conditions. It’s so exciting being part of such important impactful work with such an inspiring group of people 🙌🏻
#goal see my abs again. A life of being chronically ill makes me sedentary. I don’t like it. #yoga finding ways to move that won’t hurt my joints. #itsrough I don’t like #lovehandles I miss being active and fit #Eds#yousuck
Guess what?! It’s snowing!!!! But also, NEW MAGNETS! I altered a previous design to hopefully help the public become more aware that people who park in handicap parking may not look like their idea of disabled. Not all disabilities are visible. We all know that so well! These will be up on my shop later tonight. I’ll make an update once they’re live ♥️ I hope you guys enjoy them! If you live in the path of this snow storm, stay safe this weekend 🤟🏼
Saturday's are my favourite! Having a lazy weekend this weekend. We've done a all the adult jobs, now it's time to relax, made my favourite low low fat tea, got some treats for later!
Trying to keep positive, HIDA scan on monday, hopefully will finally give me a diagnosis, I've read there's a risk it could cause a flare up, having finally started to feel like myself, getting back to silks and starting cardio/flex classes I don't want another set back, but I want answers, so fingers crossed all is positive and I stay out of hospital, and continue feeling well. #sod#hms#eds#ibs#cosy#myhome#happy#loved#meandyou#keepitpositive#worrier#warrior#hidascan#HIDA#diagnosis
Started Physical Therapy this week for my Hypermobility. I have a very unstable right Sacroiliac Joint and my PT thinks I may also have a torn labrum of the hip and impingement. Either way, treatment will remain the same. I was told to start wearing an SI Loc belt daily & right away I could tell a huge difference in how it makes me feel. I feel held together haha. Although it’s taking some getting used to, I’m happy to have something that helps. Even though I haven’t started exercises yet, I hurt a lot. It’s like I’m working muscles I haven’t used for the first time while wearing the belt. So far I’m impressed with my Physical Therapist. He did a thorough evaluation and we covered a ton for my first visit. I start exercises next week and I’m actually nervous as much as I’m excited. I know it’ll help & I like exercise but doing rehab on areas I already have pain & weakness with is going to be difficult. I can also tell from my Therapist that it’s going to be intense based off what we went over but I’m going to give it my all.
3 242 hours ago
Sorry we have been MIA! Mommy ended up having to withdraw from Purdue for the semester due to her health issues. 😔 She is hoping to get some answers during this time off, but for now we are moved out of Purdue and home in Indy! I'm not thrilled that I won't be able to see everyone from our dorm, but mommy said we will try to visit when it warms up! Everyone came to say goodbye to me and mommy and I got lots of kisses! Here is a picture of me laying on mama's stuff when she was trying to pack with grandmama. And the other picture is how I spent all day yesterday at home. 😁 I'm a tired boy!
18 & 19. Hope and forgiveness. ✍🏻🇬🇧🇸🇪 Hope brings forgiveness – and light brings hope. I try to always look for even the tiniest glimmers of light and hope, and I trust that I shall always remember Leonard Cohen’s famous words on the subject.
The other day I had to listen to ‘one of those comments’ yet again. I felt as near near-death as one could possible feel, and had just got myself through a day of wild nausea and indescribable pain.
Oftentimes these comments are obviously said with the best intent, however this wasn’t such an occasion:
- But you look so well. You have legs that carry you!
The tone was stabbing. Bitter. I managed to respond in a civil fashion, but I didn’t respond in a constructive manner. The person deliberately tried to get to me, and I knew this well as it wasn’t her first attempt.
Looking back, I wish that I had thanked her, and said: ‘You know, I’ve had a really rough day, so thanks ever so much for reminding me that I have something at all to be grateful about!’
Plus that big, ”healthy” smile on top – of course. 😉
Hopefully I learned my lesson there and then. Hopefully I’ll be able to pour light over the wounded whenever a bitter comment reaches me next time. And within this hope lies the ability to forgive those who don’t know better than to deliberately try to hurt, or weaken, fellow human beings.
Love one another. Just do it. ❤️ 🇸🇪 Minsann. Blogg idag, om hopp och förlåtelse. Länk i biografin. •
Some days are easier than others, but every day is hard. Every step and every breath ends in agonizing pain. It's hard to be positive when you have a million and one questions and every test comes back negative or normal. Theres still no answer for the stabbing chest pain and not being able to fill my lungs fully.
As hard as it is to not know what's wrong, the one positive is that with each test we rule one or two things out. The list is starting to narrow and hopefully I will have answers soon 🙏
There are no straight roads in life.
They go side to side, up and down - rarely ever straight. All too often we swerve, lose control, crash - get lost at best. Sure, there are guard rails and signs to warn of danger ahead but there is never a guarantee of dangers that may lie ahead. ⚠️
Its tough - life, that is. It’s scary, terrifying, and when the road gets really bumpy we question, “is it worth it?”
The thing though, the most important thing, is to trust that the road you are traveling will lead to where you are meant to be. Let me tell you from experience, life is an adventure and road is never straight. But worth it? Yes - it will always, always be worth it.
I cannot shout a big enough THANK YOU to Bruce, Jeffery, Jackie, and Jack at Pinnacle Orthopedic Services for their dedication to literally make and form a custom brace for my spine. Today, alone, we spent nearly 5 hours to fit and adjust this new #clamshellbackbrace to fit my #EDS body and specific needs. 🦓
Let me tell you, since 2014 I have despised wearing a brace (although my spine desperately needed it) and after working with Pinnacle, I now have a brace that not only supports my body but one that I love and WANT to wear. It is light and we have formed it to conspicuously fit under clothes! #butyoudontlooksick#amiright?
If anyone, especially fellow zebras, are in need of any orthopedic braces for any part of your body, please send me a DM and I would be more than happy to connect you with the Pinnacle Orthopedic Solutions team. //link in bio\\
I really cannot say anything but outstanding things about these dedicated professionals. If they can help me, they can help you, too! ❤️
29 6962:27 AM Jan 9, 2019
Warning: this is not a pity post. This is a "here's the face of chronic illness" post. I much prefer how I look when I'm smiling, full of joy, cruising in low pain, and clean. But that's not always chronic illness for me. Today it's high pain, nausea, major fatigue to the point that I can barely keep my eyes open, and lots of tears. Its waking up early read to conquer the day only to have the day conquer you and be back in bed a couple hours later. It's trying to bake comfort food and then putting it away because the idea makes you feel sick. Its tossing and turning in your bed or chair because no position eases the pain. Its not showering in too many days because I cant bring myself to do it. Its calling doctors because you need to see them soon but not being able to get in for weeks. Its feeling like a disappointment. This is its face today. I have had much better days and I'm sure I'll have much worse. But this is today. Whatever your day looks like, chronic illness or not, please remember that bad days build better days. This is not permanent. My chronic illnesses are but that doesn't mean that the bad days are too. I'll get through it, and so will you. We can do it together. Fight whatever flare or depression has you and make it go away or just wait it out, but we will get through it. Every time we come out the other end of a bad day we come out a little stronger than when we went in.