#CIDPAwarenessMonth posts have been paused because I needed to have that pesky mole all the way removed. Luckily, it’s not melanoma, but still deemed likely to change. I’ve been processing another scar, and some other things, so I didn’t have the energy to do a post. But that said, below is a bit on long-term prognosis of CIDP! Long term prognosis is mixed. Personally, mine is great. I’ve reacted well to treatments, and I continue to get stronger. I work full time, volunteer, and can explore nature in Colorado. This doesn’t mean my disease is getting better, as I will always have it, however it means I’m able to kind of overcome it and I am very stable. Some patients don’t react well to treatments. Some patients end up on ventilators or lose their life from complications. Others simply can’t have the treatments needed to curb progress. Others have great success and are able to run marathons. Seriously, that’s a huge accomplishment. Most patients need a walking aid, such as a cane or braces to keep their feet up and not trip. These are called AFOs. Almost everyone does some type of physical therapy. I’ve gone through two rounds, and am trying to convince myself to start a third. Again, this is not always successful. This chronic illness affects every one of us differently. #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemyelinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanentpatient #rarediseasewarrior #raredisease
LinkedIn is getting my story this morning! Wish me luck 🫶 I’ve never shared my story on such a professional network before and I’m NERVAASSS. #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemyelinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanentpatient #rarediseasewarrior #raredisease
Day ten: What my body does, while I work from home . My body identified the myelin on my nerves as a foreign body that shouldn’t be there. Since the human body’s immune cells code for certain defenses, it coded for myelin and went on the attack. This exposed the axons, causing damage to the conduction part of my nerves. This makes it nearly impossible for my brain to get messages to my muscles. My immune system will always code for this, so yes, I’ll have this forever. . Don’t ask me why, because nobody really knows why. It’s just a thing that happened through no fault of my own. I didn’t cause this, and it was kind of inevitable. Something triggered my immune system. For some people it may be a cold, others it may be a vaccine, others may be general stress on the body. . #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemyelinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanentpatient #rarediseasewarrior #raredisease
Day 7! Let’s talk about my port. Ports are typically associated with cancer treatments, but I had one for a long time! I was getting infusions every three weeks, and it wreaked havoc on my already tiny veins. My port allowed direct access with one stick instead of starting an IV. I got my first port in September of 2017, had it replaced in May 2020, and had it out in February of this year! I still get IV infusions for Rituxan, but it’s easier to start an IV when it’s not happening consistently every three weeks for years at a time. I still have quite a scar on my chest, and I will for the rest of my life. Having a scar is a reminder of my journey and I wear it proudly! It took some work to get to this point, but I’m so happy I’m here. #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemyelinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanentpatient #rarediseasewarrior #raredisease
Day six is treatment! Since I happen to be doing treatment tonight 🤣 There’s several options for treating this crap and they all suck 🙃😵💫 -IVIg: an intravenous infusion of purified plasma from plasma donors. I did this for a few years and it got me walking! This requires a nurse and often an infusion center. -SubQIg: what you see in this picture. It goes into a layer of your skin and you can do this yourself! I e infused in four different states. -Rituxan: a chemo-ish drug that alters your immune system. I do this too! It’s once a week, for four weeks, every six months. -Prednisone: a steroid that sucks 😂 I was on this for six years. There’s too many side effects to mention, but it works. -Plasmapheresis: I haven’t done this, but it’s a cycling of your own plasma. There’s always new treatments being developed but these are currently the basics! #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemyelinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanentpatient #rarediseasewarrior #raredisease
Day ✋! Took little Copper to the dog park today. So just a general post about what I can do despite this illness. I’ve grown so much since my diagnosis, from not walking to walking two miles and still (mostly) functioning. That said, yesterday I didn’t have it in me to even fold laundry. #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemyelinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanentpatient #rarediseasewarrior #raredisease
@_angelapatton_ Chronic Inflammatory Demyelinating Polyneuropathy, broken down... . Chronic: I have this forever. There’s no getting rid of it, there’s no cure. Inflammatory: a response of the body towards something. In the case of this disease, it’s the immune system seeing something that shouldn’t be there. Demyelinating: removing the outer covering of nerves. This is a process often seen in Multiple Sclerosis. Polyneuropathy: weakness, numbness, and pain in the peripheral nerves (everything except your brain and spinal cord). In most CIDP cases, it all starts in the hands and feet, however some people have actually had to placed on ventilators due to the progression of the disease. . In other words, my body has identified the myelin sheath of my peripheral nerves as foreign, and decided to attack it. . #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemylinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanantpatient #rarediseasewarrior #raredisease
Awareness month, day 🍀4️⃣: symptoms Today feels like a good one because good grief am I EXHAUSTED and tingly, more so than my baseline, daily, typical pain levels (and no pain is normal for an average person, but anyways…) . This is a list of what I personally experience, but keep in mind every patient is different. Also, this list is more CIDP than GBS, in my non-medical opinion. . -muscle weakness -loss of balance and coordination -fatigue -tingles -numbness -a dull burning sensation aka nerve pain -chronic pain everywhere due to posture issues with my feet -sometimes strong burning sensation aka worse nerve pain -aches -muscle tightness -muscle cramps -FATIGUE -brain fog -fine motor skills are close to non-existent -I have a permanent case of dropsies. Plastic cups are my best friends. -my voice was weird at the very beginning, quiet and high-pitched. -my face froze at the beginning as well, but that was one of the first things to recover . I typically look “normal” and healthy. People typically don’t know about my disabilities until I talk about it. I wear (little) heels, hike (little) mountains, and (barely) run. But this is what I’m fighting while I’m doing those things. . #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemylinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanantpatient #rarediseasewarrior #raredisease
Chronic Inflammatory Demyelinating Polyneuropathy, broken down... . Chronic: I have this forever. There’s no getting rid of it, there’s no cure. Inflammatory: a response of the body towards something. In the case of this disease, it’s the immune system seeing something that shouldn’t be there. Demyelinating: removing the outer covering of nerves. This is a process often seen in Multiple Sclerosis. Polyneuropathy: weakness, numbness, and pain in the peripheral nerves (everything except your brain and spinal cord). In most CIDP cases, it all starts in the hands and feet, however some people have actually had to placed on ventilators due to the progression of the disease. . In other words, my body has identified the myelin sheath of my peripheral nerves as foreign, and decided to attack it. . #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemylinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanantpatient #rarediseasewarrior #raredisease
Day ✌️ . What do these letters (CIDP) stand for? WHAT DOES IT MEAAANNNN? Easy, just four words and 46 letters. CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY. I’ll go word-by-word tomorrow, but CIDP is easier to say 😉 . #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemylinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanantpatient #rarediseasewarrior #raredisease
@_angelapatton_ Happy CIDP Awareness month! If you’re new here, I share (or try to) a post a day about this lovely condition I battle. But for today, just a selfie featuring some awesome swag 🥳 . #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemylinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanantpatient #rarediseasewarrior #raredisease
Happy CIDP Awareness month! If you’re new here, I share (or try to) a post a day about this lovely condition I battle. But for today, just a selfie featuring some awesome swag 🥳 . #cidp #awareness #chronicpatient #disabled #cidpwarrior #chronicillness #chronicinflammatorydemylinatingpolyneuropathy #cidpfoundation #warrior #chronicallyill #chronicallyawesome #cidpgbs #gbs #permanantpatient #rarediseasewarrior #raredisease
This year l'm entering my 5th year of plasma exchange. Combining this with my IVIG it has been my life saver since the relapse in 2018 and the diagnosis back in 2016. I've gone from being in hospital for 10mths unable to walk or use my hands to being normal again. No more Chemo or Steriods thank god. That shit is nasty. So what have l learnt from it all ? To never complain because seriously , people don't need to hear it . To live every day with gratitude, love and smile . To never take life for granted. And most of all . Be the bigger person and walk away from bullshit. Life isn't a game , neither is a person's life so treat your's and those around you with respect. Because oneday it might be too late . #cidp #cidppatient #livelife #nevergiveup #healthy #research #healthylife #cidpfoundation #australia #ivig #plasmaexchange #redcross #donate #donateyourplasma
It's that time of year again! Our 6th Annual Days of Thanks/Days of Giving has arrived and it's our time to give back. We continue the tradition of offering a donation on behalf of our team members to a variety of local and national organizations making an impact. 2022 is just as diverse as previous years, with the Canna Advisors team choosing organizations across an array of unique focus points: social justice & equality, medical & mental health, community integration, arts & outdoors, and disaster relief. Come learn more about why these organizations were chosen, the impact they're making in their own communities, and what you can do to support them as well. thinkcanna.com/days22 #thinkcanna #cannaadvisors #daysofgiving #daysofthanks #donations #bouldercompanies #colorado #bouldercolorado #socialjustice #equality #medical #mentalhealth #communityintegration #arts #outdoors #disasterrelief #lastprisonerproject #expungecolorado #matthewshepardfoundation #northwestharvest #gbs #cidpfoundation #mentalhealthcolorado #michaeljfoxfoundation #bestbuddies #realnessproject #youthonrecord #coloradotrailfoundation #friendsofsayulita #prosayulita
If you know me, you know I love turtles. There’s no real reason for it. I’ve just always found them to be cute and I just like them.😂 I had turtles growing up as a kid. Turtles have always been my “favorite animal” when asked (see picture from 5th grade for reference) and also a go-to fun fact of mine: “I like turtles.” I have a tattoo of a 🐢 I got on my neck when I was 24 and I have two 12 year old turtles that live with my husband and I and our 2 dogs 🐶🐢 I don’t think I really understood the WHY behind my passion for turtles until last night. I recently joined a GBS/CIDP foundation private Facebook group and was reading through the posts. I saw a lot of posts mentioning turtles. I got curious so I searched the search bar for turtles and did some digging into other posts. I found out the logo for the GBS/CIDP foundation is a turtle.✨🤯🐢 I’m not really sure my point in sharing this. I just feel it’s a sign things are going to be okay and I’m meant to be where I’m at right now even if that’s not what I wanted out of my life or expected for my life as a 31 year old. Please know that whatever you’re facing - you are not alone. It might feel like the world is crashing down and there’s no way out and you didn’t do what you wanted to do by *insert* age, or you didn’t get the job you wanted, or didn’t meet your goals or whatever resonates with you but I promise things will work out. There is a way to cope with whatever is happening to you. Don’t be afraid to ask for help. Whether I know you personally or not, I’m rooting for you.✨
@ontracknutritionmorton where future olympians refuel...... Thanks to @callieaswanson for making such great drinks as always. #cidp #cidpwarrior #cidpfighter #cidpfoundation #cidprunner #cidpsurvivor #cidpsucks #gbscidpfoundation #thefacesofguillainbarreandcidp #gbscidp #chronicinflammatorydemyelinatingpolyneuropathy #chronicillnesswarrior #chronicillness #nuunambassador #nuunambassador2020 #bravelikegabe #olympicdreams
Today was infusion from hell. It felt like forever. Three different sticks to get the IV going and that includes blowing a line as well. Got almost no premeds since there was no tubing for it. Now bring on all the nasty side affects. This is on top of getting an hour of sleep last night. I find it interesting what we put our bodies through when we have to. Our bodies aren’t meant to be blasted with foreign antibodies to kill off the ones you make but here we are. I always thought I knew what strong was until all of this starts and damn there was a whole different level that I didn’t even know about..... #cidp #cidpwarrior #cidpfighter #cidpfoundation #gbscidp #cidpsucks #cidpsurvivor #cidpawareness #gbscidpfoundation #cidp #thefacesofguillainbarreandcidp #cidprunner #chronicillness #chronicpainwarrior #chronicinflammatorydisease #chronicinflammatorydemyelinatingpolyneuropathy #nuunlife #nuunambassador #nuun #bravelikegabe
Posted @withregram • @causeirunfor This photo says it all. For you who do not know CIDP is a nasty little bugger that destroys the myelin covering of your nerves. It is so rare the odds of getting it are 5 in every 100,000 people. It blows, no way around it. I came to grips pretty quickly that I had this disease and went into how to fight it. However, what is the worse thing in my mind is on a night like tonight where my body tanked that picture you see is going on. It is hard to come to terms with that your body is destroying itself and there is nothing you can do. I have dropped so much stuff tonight, couldn’t move my legs, and had to lay on the floor for 10 minutes because I couldn’t get up. These are the worse nights of them all and tomorrow might be just as bad if not worse. Sadly then it becomes how much damage has been done to the body. So folks if you get a chance gist @gbscidpfoundation and learn more or even donate so they can help research this disease more and hopefully find a cure. #cidpfoundation #cidpfighter #cidpwarrior #cidpawareness #cidpsucks #cidpsurvivor #gbscidp #gbscidpfoundation #cidp #chronicinflammatorydisease #chronicillnessawareness #chronicillness #nuunambassador #nuunambassador2020 #bravelikegabe
So this fella is my best friend and worst enemy all wrapped into one. This is an antibody that is the main part of IVIG and also what is slowly destroying my body. Basically, my body is broken and produces messed up antibodies that think the myelin coverings of my nerves are the enemy. We have figured out it was from having undiagnosed Guillain-Barré in college. So once a month I get new antibodies or as I call it an oil change. You might think oh that isn’t bad but for me IVIG last 3.5 weeks, sometimes the whole month. I usually have some issues a few days before but this month it had other plans. I ran out a week before and it came on full-blown. However, there is something you can do. Donate blood! Not only so there is not a shortage but they are able to get IVIG from the donor blood. So lend an arm, give a hand to have more antibodies through out the land. #cidp #cidpwarrior #cidprunner #cidpawareness #cidpfighter #cidpfoundation #cidpsucks #cidpsurvivor #gbscidp #gbssurvivor #gbscidpfoundation #chronicillness #chronicillnesswarrior #chronicinflammatorydisease #antibodies #nuunlife #nuunambassador #nuunambassador2020 #nuun #nuunhydration #teamnuun #bravelikegabe
This photo says it all. For you who do not know CIDP is a nasty little bugger that destroys the myelin covering of your nerves. It is so rare the odds of getting it are 5 in every 100,000 people. It blows, no way around it. I came to grips pretty quickly that I had this disease and went into how to fight it. However, what is the worse thing in my mind is on a night like tonight where my body tanked that picture you see is going on. It is hard to come to terms with that your body is destroying itself and there is nothing you can do. I have dropped so much stuff tonight, couldn’t move my legs, and had to lay on the floor for 10 minutes because I couldn’t get up. These are the worse nights of them all and tomorrow might be just as bad if not worse. Sadly then it becomes how much damage has been done to the body. So folks if you get a chance gist @gbscidpfoundation and learn more or even donate so they can help research this disease more and hopefully find a cure. #cidpfoundation #cidpfighter #cidpwarrior #cidpawareness #cidpsucks #cidpsurvivor #gbscidp #gbscidpfoundation #cidp #chronicinflammatorydisease #chronicillnessawareness #chronicillness #nuunambassador #nuunambassador2020 #bravelikegabe
#saysitall #Repost @goddessukie ・・・ #cidpfighter #cidpfoundation #cidpwarrior #gbscidpfoundation #chronicpain #chronicillness #invisibledisease #invisibledisabilities #cidp #cidpawareness
Me & my neurologist my favorite Doctor. My Dr. C. great visit today. #rarediseaseday #cidpfoundation #cidpfighter #guillianbarresyndrome #cidp #cidpsurvivor #cidpwarrior #invisibledisease #invisibledisabilities #hiddenillness #chronicpain #chronicillness #spoonies
Not all disabilities are visible #chronicillness #invisibledisease #invisabledisability #cidp #cidpfighter #cidpfoundation #raredisease Eye makeup is #urbandecay heavy metals. Stayed on all day & night! No eyeshadow does that on me.