myCVIDlife

Well my kids are turning out just like me!!! Lots of medications & spending time at doctors... Midas ears are getting better, scar is doing better but got more medication, bow needs better ear cleaning first time sick, knuckles has a war wound from trying to bounce off some rocks... he’s got a stitch. On the autoimmune side... my lichen planus has finally stopped spreading. I don’t know about anyone else subq I can tell when I’m due for my next infusion. I really can’t focus, headaches, issues sleeping, sweats and just feel yucky! They say subq is supposed to level you off. I don’t quite agree. Anyway that’s my update. Been busy keeping up with medication for seniors heart.. every 8 hour & 12 hour pills. Plus pain mediations, plus cbd.... now my heat and service dog knuckles... antibiotics but been sleeping all day... then all dogs ear mediation and cleaning every 12 hours and senior eye drops at least has gone down to once a day... phew I’m tired writing all that out... mine have mostly gotten to just at night.... #spooniegirl #dogmom #doglover #lovebigdogs #petinsurancerocks #petinsurance @thefarmersdog we love you! #zebrastrong #cvd #piawareness #autoimmunedisease #imafighter #mycvidlife #hypogammaglobulinemia #lichenplanus #sjogrens #eds #ehlersdanlossyndrome I’m sure I left something out https://www.instagram.com/p/B59dMJ0g44f/?igshid=gugvas3c9bfv

A little post infusion fun! My pup is the best at keep me company. #zebragirl #zebrastrong #mycvidlife #showmeyouestripes #daretoberare https://www.instagram.com/p/B551WGtgG66/?igshid=1l72onfaavdjp

It’s my Randolph sharpie box!!! Have to make these infusions fun... it now makes sense why they have a flow rate... wow that subq goes fast without it 😇 here’s to hoping for no bad side effects. We caught it before second needle. Luckily I did some Good pre medications . #infsuinday #cvid please show some love to @info4pi @idfcommunity @rare_advocates @nord_rare whom do so much for the #picommunity and #raredisease most of us look #amazing but our insides scream hey you aren’t looking to hot here! Please #donateplasma to help #savealife @cslbehring can help you as well #hypogamawhat #hypogammaglobulinemia #mctd #mixedconnectivetissuedisease #ehlersdanlossyndrome #bendme #sjogrens #moistureseekers #zebrastrong #spoonieforlife #bigdogs #sharps https://www.instagram.com/p/B5ywsIlgs3l/?igshid=tm5j4rmvd31y

Dogs can be the best medicine!!! I love my dogs! #ilovemydogs #dogsbestfriend #dogsbestmedicine #boxersofinstagram #cvid #autoimmunedisease #sjogrens #lichenplanus #donateplasma #eds #ehlersdanlossyndrome #spooniestrong #zebradogs #spooniedog https://www.instagram.com/p/B5uBzhKglfF/?igshid=hp6m6l5sihd6

Rare moment with a rare disease. Thankfully with the infusions I was able to join my mom & sister out to eat. A picture is worth 1,000 words & if you see in the other photo we got my sister to be quiet for that moment... inside joke. My sister talks very fast & quite a bit. Thankfully I had my infusion next day. Although infusions don’t keep us from getting sick they sure help from us getting sick for as long. I usually sit in a place where not many people, wipe the silverware down & if the wait staff looks sick have my family place my order. Just a few #primaryimmunedeficiency #piawareness #tipsforautoimmune #mytip #mycvidlife #family #alsawareness https://www.instagram.com/p/B5hP9ragAPL/?igshid=jzht6rz9w4sz

Infusion day! My new zebra my mommy bought me. My trusty pump #freedom60 @korumedical my #immunoglobulin #infusionday #zebrastrong #donateplasma #plasmasaveslives #thankfulforplasma #plasmadonors https://www.instagram.com/p/B5dwzUrAlTI/?igshid=16kws2qdoy15y

What a great trip to Mayo in Arizona to their dermatology department. It is definitely a severe case of lichen planus. I was poked, photos, and xrays to hopefully become a part of the clinical trial going on to help others who have lichen planus. I was able to sit in on some wonderful informative webinars. I have learned so much over the past couple of weeks. I’m hoping this week to get all my thoughts collected to be able to update everyone. The travel back and forth has definitely taken its toll on me. I was invited to go talk to plasma donors as well. I’m really looking forward to that this week. Happy thanksgiving to all my spoonie friends, their friends & caregivers #zebrastrong #mayoclinicarizona #clinicaltrials #bethechange #bethevoice #donateplasma #spooniestrong https://www.instagram.com/p/B5ZN0L9Abmt/?igshid=1fuwl6pqaidxf

I am beyond fortunate to have a local vet that does home visits... Senior was having issues with his eyes and big guy was having issues with his ears. I really didn’t want to stress the senior guy out by taking him to another vet visit. Last night he wasn’t looking to good either. She came over and in the 24 hours he was doing much better but he has gone blind in one eye. Midas definitely has a bad ear infection and I know I should have gotten him in sooner. It’s tough having #autoimmune and having to take pups to vets too. Luckily the vet they go to can come to me.. anyway that’s the update on them. Myself I just got back from Mayo Clinic in Arizona seeing the #dermatology department. I’m definitely a sever case of #lichenplanus a text book case but extreme. Hopefully I get into the clinical trial & I can not only help my spots go away but prevent those in the future from possibly getting an extreme case like me! #lichenoid #rarebreed #zebrastrong #homevetvisit #petsfirst #ilovemydogs #seniorboxer #donateplasma #mycvidlife #cvid #mctd #daretoberare #beavoice https://www.instagram.com/p/B5L6_ezg-p-/?igshid=12tptjuju3n6u

I’m exhausted!! I got in physical therapy before my flight to mayo in Arizona! I’m hoping to be able to see my friends while I’m there. Hopefully the #dermatology department at #mayo can get my #licenplanus under control. #daretoberare #mycvidlife https://www.instagram.com/p/B5GZv3egnbE/?igshid=5zshpn7fa33x

This senior & I are spending as much quality time as we can together. I’m enjoying every last minute. Today I was fortunate to share my story with the #cslplasma center here in Nevada. This is all thanks to the @idfcommunity im looking forward to working to help raise more awareness on how important #plasmadonations are to the #raredisease community and #organtranslplants and so much more. I got to hear other people’s stories as well and connect in such an inspiring way. #donateplasma and help #savealife #youdontlooksick #plasmasaveslives #seniorboxer #boxerofinstagram #advocate #beavoice #bethechange #autoimmine #immunedeficiency #spooniestrong https://www.instagram.com/p/B5CT6oCgqvH/?igshid=1785v3ixflsr8

So much has happened over the past few days! I first have to say don’t ever be afraid to advocate or speak up! I know at times it can be frustrating. I have been worried about the severity of my lichen planus over the past few months. I’ve also been concerned that each dermatologist has said it’s a severe case. I finally decided to do what I have learned as an advocate to do some research, check the rare disease pages, and follow up on links. I also reached out to share my story on social media with other people who might be able to understand my situation. Lastly, I contacted a clinical trial and after emailing back & forth as I got a surprising answer. It was the clinical trial who took an active interest in my case and shared my concern. Next week I have that appointment! It’s definitely worth speaking up & doing your research. Next I am now part of NORD! I love being a voice, an advocate and being part of the change. Rare disease isn’t easy but making sure those who don’t have a voice are heard is important. I love being part of these wonderful organizations like IDF community and NORD. Volunteering my time makes me feel so good and gives me something to do with people who understand when I can’t that I can’t and will do when I’m able to pick up. They understand the zebra in me. advocacy work is so important to help get these changes that need to be made and I wish I had stepped up prior to having these rare diseases. Lastly super happy to say my senior dog is coming up on his 2 week check up after his emergency visit and been living up life! #daretoberare #makeachange #bethechange #spooniestrong #mycvidlife #cvid #cvidlife #sjogrens #lichenplanus #clinicaltrials #supportresearch #raredisease #bestrong #supportoneanother #raredisease #zebra #zebrawarrior #beavoice #alscaregiver https://www.instagram.com/p/B46mQ4NgKLQ/?igshid=wshqwzgyfwka

The old man, big baby and me! Thank you everyone for good vibes. I’ve been busy working and reading up on all kinds of #raredisease to not only learn about all the commonalities which really making us all not that #rare #bigdog #autoimmunedisease #autoimmune #autoimmunewarrior #spoonie #cvid #commonvariableimmunodeficiency #livelovelife #boxerofinstagram #mastiffofinstagram #mastiffoftheday #boxerdogfans https://www.instagram.com/p/B41kyGkgMNu/?igshid=muqnivq8c5ai

The joys! I sent this clinic over my #biopsyreport saying it is #lichenoidplanus ive been to 3 dermatologists but now I sent a photo of it recently and got this email back to me. I’m actually happy they want to do further testing. I even questioned the #lichenplanus biopsy result since the rash just won’t stop spreading. They have all my #autoimmune records so we will see if they come up with something new for this rash. #piawareness #cvidawareness #mycvidlife #cvidlife #dermatologists #loveme #raredisease #zebrastrong https://www.instagram.com/p/B4wO2kZAzDt/?igshid=byl3c44pbz8g

All right tomorrow first round of #PUVA I was surprised they didn’t prescribe medication for it... however here comes my #wintertan and hoping my #lichenplanus finally starts going away. #lichenplanusautoimmune #lichenplanussucks #autoimmine #cvid #cvidawareness #piawareness #sjogrens #ehlersdanlossyndrome #eds #raredisease #daretoberare https://www.instagram.com/p/B4tlRgTAyVD/?igshid=178cmbnbgnc0d

Please if anyone watches this make sure you let them know to educate themselves on #primaryimmunodeficiency #piawareness #thegooddoctor @thegooddoctorabc @abcnetwork I would be more than happy to speak to any #localnews before or after as a patient about #piawareness & the @idfcommunity this would be also a good reminder to #donate plasma have a #plasmadrive #lasvegasnews @ktla5news @ktnv @abcnews #zebrastrong #cvidawareness #beavoice #advocate #bethechange #positivevibes https://www.instagram.com/p/B4om4I_AJUh/?igshid=18a8vlfx8oope

My senior boxer is in the doggy hospital for boxer cardiomyopathy. All healing vibes & prayers are needed as his heart is fighting on overdrive. Hopefully be able to bring him home tomorrow to hang with his brothers the rest of his senior days. He definitely is a fighter. I have my procedure tomorrow for my tooth. Im hoping I don’t scare the doctor off with my immune issues. #dentalwork #boxercardiomyopathy #seniordogsrock #oralsurgery #fracturedtooth #cvid #piawareness #healingprayersneeded https://www.instagram.com/p/B4gsAH4gn6-/?igshid=15iaa9qkdafij

Nope I never eat alone! These guys are so funny. Have to say for whatever reason after this infusion I felt pretty good. #postinfusuin https://www.instagram.com/p/B4YygxnAhPR/?igshid=17e98dpo6c6x8