I think one of the most difficult parts of chronic illness is maneuvering relationship in the midst of it. It is only human to want someone to be able to understand what you are feeling, why you feel that way, and know how to help in the best way possible. For me personally, there is a big factor in wanting someone to want to sit and listen to me babble amount my vitals, doctors, medical fears, victories, how I feel, and nonsense. I have lost all of the greatest relationships I have had my life and honestly it sucks. When something happens and I want to call some for a laughing victory dance to be shared over phone or a crying in bed late night talk....who is there to call? .
I find this to be true for many of you that I have had the great privilege to talk to. I think there are a few things to be done. 1) Let’s make sure we are supporting one another! We each get enough hate the way it is!
2) Know it is not your illnesses fault that the relationship/s ended do to the affects of CI
3) Make sure we give friends that have broken off second chances to be there for you in the crazy good and learn to be there for you better in the crazy sad.
If any of you have a friend that you have drifted away from who is chronically ill, do your best to be there for them. They a somebody, some day, very soon.
The Great Surgery Adventure, recovery
I got my stitches out! It’s nice because they were starting to pull, and it also let me shave my head again. Since getting back to Denver, most of my time has been spent dealing with crises or recovering from two major surgeries and road trips. I will say that before the neck surgery, I would have been stuck on the couch for about a month after. Instead, I’m able to get a few small things a day done around my apartment. It takes me forever, and I need a lot of breaks and a nap, but I say progress!
The other part of recovery I’ve been working on is strengthening my legs and core with a few simple exercises. Which is a great tie into...
A loaded word for most of us, and a trigger for some, I’m sure those of us with chronic illness have heard about aunt Sally’s friends daughter who cured like 5 illnesses and cancer by doing super-yogarobic sprinting. That being said, exercise - or even just movement, is important in recovering from surgery and can benefit most people with most conditions.
I’ll be the first to admit how hard it can be, as severe fatigue and chronic pain have been some of my most disabling symptoms from the beginning. My problem was, I was trying to look at exercise like I used to: 30 min- 1 hour at the gym or doing a sport 5 days a week. I couldn’t stand for more than about 5 minutes, so forget that. I had to redefine for me what exercise meant. I worked on coming up with a few simple PT exercises I could do in a few minutes. Instead of saying, “I’ll do three sets every day,” I just try to remember during those times when I have the energy to do the mini routine. If I miss a day, a week even - fine, just try to remember. On better days I may walk in the hallway with my crutches. On bad days i may try to remember to pump my feet as I lay in bed, or I may just skip it and be gentle with myself. It’s helped. 🙂
Hi y'all! Im selling infant/lap sized blankets! All proceeds go towards a cardiac service dog.They measure a little over 30x30 inches. If you are interested in a custom order with your pick of 1 main color and 1 contrast color private message me! If you are looking to order the ripple blanket please read the first photo as the stripe pattern will be different then what is pictured.
The white blanket is available to purchase, send me a pm if interested.
The pink ripple has been sold.
Shipping not included. Shipping will be calculated upon purchase. All orders will be posted on etsy to ensure everyone's safety. -You will not be obligated to pay until the blanket is done and ready to ship-
#dysautonomia #CHD #servicedog #crochet
Last night I had a dream that I was running. I wasn't running from something, and it wasn't the kind of dream running where everything is slow motion. I was just running- with no pain. I was going up hills and over rocks, jumping off things and moving around pain free. It was so lovely to feel like that even if it was only a fabrication from my subconscious self. I truly cannot remember the last moment in which I didn't have pain. I have no memory of what it was like to wake up without 100 pound weights on my legs and fire in my chest. No memory of how my body felt when I used to run through the woods brandishing stick swords and climbing trees as high as they would go. I remember the moments, but not the lack of pain. It wasn't something I thought I would need to remeber. I never stopped myself as a child and thought "remember how easy it is to stand, remember the clear breaths, remember the stability of your knees, you'll miss that when you're older" because I didn't think I would miss it. I didn't think I would have to. We're exploring some options right now that may be able to help, but may not. It's all very weird and uncertain but I would appreciate prayers for provision and understanding if it doesn't go according to our plan. I know God had something in place long before I considered this but I don't know if I'm ready to see if our plans align or not yet. .
Image description: Abby sitting on the ground. Moo is lying across her legs in her service dog vest.
#eds #ehlersdanlos #ehlersdanlossyndrome #chronicillness #chronicallyill #spoonie #rsd #crps #POTS #POTsie #tachycardia #pain #disabled #disability #edstype3 #dysautonomia #edsawareness #chronicpain #100InvisibleDays #servicedog #pitbull #staffordshireterrier #servicedogintraining #sdit #mobilityservicedog #mobilitydog #edsservicedog #bullybreed #dog #MooTheMobiltyDog
I have to start taking better pictures of him lol!
To wander, is an adventure.
Spent the day out with friends to love on all the nature 🌳🍃🌲💚
So sometimes when you have a natural alerter- you have to work on shaping the way they alert during the dog’s natural alert. I’ve had the Chiari headaches all day but they eased off for a while. However it’s starting to lightning and thunder and Kaz started alerting to impending headaches/migraine again.
His natural alert is to climb in my lap or whatever he has to do to lick my face/neck. For obvious reasons this wouldn’t work if we were at let’s say a restaurant. His alert for high heart rate is to put his head in my lap, so for this I wanted to change his alert for migraines/Chiari headaches to bumping my hand. So when he started alerting I started asking for the alternate command which we’ve previously trained.
The first video is a blooper of sorts. He gets frustrated easily if I don’t listen and so he started offering behaviors such as paw. Then you see him climb in lap and start licking which is his natural way of alerting. The second video shows him bumping my hand in the way I want him to for his alerts. It’s not perfect yet but he’s getting there.
We also practiced some anxiety tasks and more dysautonomia alerts (heavy breathing) while I was feeling ok (third video). My heart rate is better under control now with the new meds and fluids but I still have dysautonomia. This can cause dizziness, shortness of breath, and profuse sweating when standing. So I’m trying to get him to notice these things as well so he can still alert even if my heart rate isn’t up.
A service dog is never done training. Sorry for messy apartment- joys of packing. But since he alerted I am about to take meds and go to bed.
When I take off the rose colored glasses, I see the truth and that is so beautiful. What are you grateful for today? Remember that even in the most trying times, there is still beauty and goodness. We don’t need to walk around with rose colored glasses or try to skew the difficulty. If we simply stop, breathe, and swap the rose colored glasses for some gratitude glasses, things become even more beautiful.
Stay grinding when and where ya can, back to packing ✌🏼
lol the last time I walked around the city I literally couldn’t walk the next day but I’m doing this again tomorrow so who cares LEGGO
Is there anyone else who feels that once you talk about your illness to someone once, they don’t want to ever talk about it again? They quickly try to change the topic or they seem inconvenienced or something? I know it’s not a positive topic but it’s something I struggle with everyday. Unfortunately, pain and illness never leave my mind. There’s not a moment where I forget I’m sick because there’s so much wrong in my body. I have to be so cautious with everything I do in order to prevent flares and damage. I’m not able to forget about it. But I still often feel guilty or like I’m bothering everyone when I talk about my illnesses for once. It’s hard to have something you struggle with everyday but you can’t really talk about it. I feel like people in my life just kinda expect me to be positive or keep my battle hidden. I just wanted to see if anyone else feels this way. #chronicillness #spoonie #spoonielife #bipolardepression #bipolar #mcas #mastcellactivationdisorder #pots #dysautonomia #eds #heds #zebrastrong #butyoudontlooksick
Piper: My girl and Mom made it through the first day of @dogbowlfun
and had a great time! We knew we would have a great time meeting some of you, but we weren’t sure how my girl was going to hold up with such a long day and high temps. Other than being a bit sun burnt(even with regular sunscreen application) and having a lot of blood pooling from her POTS(postural orthostatic tachycardia syndrome) my girl’s body did it! The wheelchair made today possible for my girl along with the great treatment she receives from her allergist and endocrinologist at the Cleveland Clinic! I can’t wait until I can come too! My girl would love to meet more of your there tomorrow! #servicepuppiper #opietheservicedog #servicedogintraining #vizsla #wirehairedvizsla #vizslapuppy #dogshow
I put a little extra effort into my workout today. Not because I have to, but because it means something to me. Every extra push-up or a few extra reps reminds me to be thankful for what I have and to appreciate each day. I will always be grateful to those who paid the ultimate sacrifice for our country. It means an immeasurable amount to me, not just this weekend, but every day. 🇺🇸❤
P.S. Excuse my angry face in the first picture. There was a creeper in the gym, and I make a habit of staring him down--hard to change my expression after that. 😂
#memorialday #forevergrateful #freedomisntfree #rangerup #rangerupapparel #poppyleggings #nevergiveup #keepgoing #chronicillness #dysautonomia #pots
Yesterday was the best I've felt after a physical therapy session yet. .
That's not to say it wasnt hard. At one point I felt like I was going to throw up every meal I've ever eaten but thankfully I kept it down and took a short break. One exercise in particular is just as bad as the first session and it's the only one that makes me queasy. I also had to take a couple breaks during the portion that focused on legs. .
Still, I increased my weights and reps for my upper body movements and I just felt pretty decent throughout. My heart rate was only pretty bad in one spot so that's a win. Afterwards my physical therapist discussed the potential of doing PT in a pool maybe sooner rather than later. I have some issues with the pool that I won't discuss here but if it will help me I need to be open to it and I am. He believes that I will be able to do more in the pool for a number of reasons. .
The biggest reason is the pool offers some natural compression and the way your body acts in the water, blood pooling slows way down. This is something everyone with #dysautonomia
should know. I'm not quite ready to be there yet but hopefully when I am I will progress even faster. Don't worry though, you're not likely to see any pool pics out of me. I'm not trying to scar anyone with me not wearing a shirt :) . .
Didn't get much walking in today but I focused on arms which felt great so I'll take the good with the not as good. Hopefully the weather will allow me to walk more tomorrow. .
While I'm here thanks to my fellow Virginians for reading my Medicaid expansion posts. I know they're boring and not fun but it really is an important issue that people need to know about. .
More of that content you really want - another pic of the old man surveying the neighborhood. .
#potsawareness #chronicillness #learningtowalkagain #physicaltherapy #progress #pushthroughpain #staypositive #doggo #oldman
I have been missing out on life for years due to so many issues with my health! Many date nights with my husband would have to be cut short due to me feeling so poorly. I thought that I would have to accept where I was at because everything I had tried did not work!
See if you can identify with me with any of the following:
Trouble going to sleep and staying asleep
Digestive irregularity/Constant bloating
Brain fog/Unable to focus
Feeling Sad or Nervous
Sluggish metabolism/Trouble losing weight
Cravings for sugar and caffeine
Any of these sound familiar to you?
It has all changed for me recently... the plant based supplements I am taking have helped me in ALL of these areas!
Have you tried every option and don't know where to turn? Would you be open to talking to me more?
#theHealingFromWithin #guthealth #plantbased #healthandwellness #healthyinsidehealthyoutside #bestoftheday #instagood #gastroparesis #chronicillness #dysautonomia #instamood #photooftheday #neurocardiogenicsyncope #beautiful #instadaily
It’s supposed to be 97 degrees here tomorrow.... might as well start digging my grave tonight 💀😩
It took four hours of on and off resting before we got all the gear ready to go, but we made it out on the water. The best past about stand up paddleboards is that it doesn't actually matter if you stand. They work just fine laying, kneeling, or sitting criss cross. And none sick people even use them that way, especially in the wind! I had thought about getting a kayak, but I am really happy with this since I can lay down so easily. I've grown incredibly fond of water sports since losing the ability to run. #dysautonomia #posturalorthostatictachycardiasyndrome #chronicmigraine #fatigue #SUP #standuppaddle
A quick recap on my feeding tube situation to explain yesterday's post (check out previous posts for more details) - I've had my GJ tube since 2014 but have had a lot of issues with it migrating back into my stomach (it is supposed to stay in the jejunum, the middle part of the small intestine) which makes me sick. And the balloon in my stomach that holds it in place ruptures after a few weeks, leaving the tube to wobble around and cause painful granulation tissue. Also, GJs have to be changed every 3-4 months (mine usually more often) so I am at the hospital a lot.
So I decided I wanted to try a dedicated J tube to hopefully eliminate those issues. The surgery, in October 2017, was difficult and much longer than expected. And the complications began right away. Recovery was awful and long. I lost weight and got into a dangerous nutrition situation, so had to go back to my GJ as we worked out the J situation. I had several different J tubes, but after 7+ months of trying, I finally had to accept that my body just can't handle it. Any time I used it I got cramps, nausea and other unpleasant symptoms. Luckily, I still have my GJ, and strangely enough things have actually gotten better with it.
So that's the short version of why I had my J tube removed this week. Yes, it was hard, I suffered a lot and it didn't end up working out. But I feel OK about it. I feel compelled to do everything in my power to improve my quality of life, and not every chance I take is going to help. I've had a lot of other abdominal surgeries and they were all life changing in a positive way, so I can't be too upset about one failure. Although I did learn something important - my body can't handle a J tube.
By the way, my fever is down (but not gone, yet) and I feel much better, although still sick and in a lot of pain, so almost definitely no infection! I am so so relieved. The past couple of days have been been up there at the limits of what I can stand, and have really taken it out of me. But I think the danger is past and I'm heading in the right direction now.
Thank you for all the kind messages and support! I ❤️ you guys! 😊
making a YT video! comment some questions for us to answer?
POTS stands for postural orthostatic tachycardia syndrome. Breaking POTS down based on its name can provide insight into the condition:
Postural means the condition is related to the posture of the body.
Orthostatic also suggests the body's position is involved and refers to dizziness and a sudden drop in blood pressure.
Tachycardia means a rapid heartbeat, generally over 100 beats per minute.
Syndrome means it is not a disease but rather a group of symptoms that are often seen together.
POTS is characterized by an increased heart rate, drop in blood pressure, and dizziness upon standing. This happens because the heart does not get enough blood when a person stands up, so the heartbeat increases to try to improve the blood circulation.
POTS is a type of dysautonomia, which are disorders of the part of the nervous system that regulates blood pressure, heart rate, and breathing patterns.
#potssyndrome #posturalorthostatictachycardiasyndrome #pots #autoimmunediseases #mononucleosis #dysautonomia #nineyears