Empowering Patients, LLC

Alison~ “Advocating to clarify the healthcare world with you.”

[empoweringpts9]

DYK: If you’re on #Medicaid or #EBT (aka government assistance), you qualify for discounted #amazonprime benefits. This is helpful to those that can’t readily get to the grocery store or shopping due to their disability, but also cuts down on other costs like streaming (#netflix etc) subscriptions. Many already receive amazon prime and pay the full amount, by scraping pennies together. This is a way you can enjoy the perks and also take your mind off of needing to pay lower fee (prime streaming). I’ve included the different steps that you’ll most likely encounter, AND you’ll get a refund of the amount that you’re saving. How easy is that? Thanks to @cnet for pointing this out. . . Sidenote: Are you like me and always have something pending in your amazon cart? . . . . . . #IBD #inflammatoryboweldisease #crohns #crohnsdisease #ulcerativecolitis #INDcolitis #autoimmunedisease #ostomy #chronicillness #RA #rheumatoidarthritis #disability #SLE #lupus #PSC #psoriasis #T1D #savemoney #alwayssomethinginmycart #mycartisneverempty https://www.instagram.com/p/BnSSHtKA6Re/?utm_source=ig_tumblr_share&igshid=s583i5zob7v5

[empoweringpts9]

In 2 days we’ll be holding the next #IBDSC chat! The topic to be discussed is Women’s and Men’s Health with an Ostomy. If you have an ostomy, know someone that does, or you’re about to become an ostomate, be sure to join in! This chat will include colorectal surgeon, Dr. Steven Wexner from Cleveland Clinic Florida. . We hope to see you on Thursday at 8pm ET (1am BT/5pm PT). . . . . . . #IBD #InflammatoryBowelDisease #Crohns #ulcerativecolitis #INDcolitis #diverticulitis #hirschprungs #ileostomy #urostomy #colostomy #ostomy #jpouch #ibdsocialcircle #stoma #ostomyfamily #TwitterChats

[empoweringpts9]

CHATapalooza!! There’s a few big chats going on in the next few days that you surely don’t want to miss! . 1️⃣) #IBDChat Tonight (June 25th at 7pm EST): @crohnscolitisfoundation, @arthritisfoundation, @bethecactuskenz, and Dr Bhana will be discussing Joint pain, arthritis, and IBD. Many times these go hand in hand, and there’s #IBD patients that aren’t aware of this connection and how to help themselves. . 2️⃣) #GWGChat Tomorrow (June 26th at 7pm EST): @ibdgirls, @empoweringpts9 (yours truly), Mandi Staynor RD, and @drinkdripdrop will lead discussions to #BeatTheHeat and work to stay on top of #hydration. This is open to all chronic illnesses and genders. . 3️⃣) #IBDSC Wednesday (June 27th at 7pm EST): @journalingibd, @cceffect, and Dr Taft will join together to talk about cohabitation when a partner, spouse, or family member has an IBD. . . . . . #InflammatoryBowelDisease #Crohns #ulcerativecolitis #colitis #INDcolitis #girlswithguts #chronicillness #dehydration #PortsArentTheEasyWayOut #ostomy #jpouch #arthritis #RA #ORS #jointpain #ExtraIntestinalManifestations #TwitterChats

[empoweringpts9]

Endocrinology has been doing all sorts of testings trying to get to the bottom of my #cushings, that’s gotten out of control the last year. I can’t recall ever doing salivation samples, to this extent. So far, I had to do multiple collections like this at midnight, and bring to the lab each time. This cotton pipe tube has to be in your mouth, in a specific area, with specific criteria. Now we await results, and hopefully an antidote. . . . . . . . . #inflammatoryboweldisease #IBD #crohns #ulcerativecolitis #colitis #INDcolitis #IC #inflammatorydisease #ostomy #ileostomy #colostomy #crohnsdisease #autoimmunedisease #makeup #photography #cycliccushingssyndrome #prednisone #entocort #corticosteroids #devilstictacs #adrenalinsufficiency #adrenalgland

[empoweringpts9]

THIS ROOM is filled with passion and fight for people like us! A HUGE THANK YOU to all of those out stomping Capitol Hill and representing all of their GI patients! **Make sure you head over to different platforms and thank the GI’s and the policy makers for taking time out of their day.** • #Repost @amcollegegastro with @get_repost ・・・ ACG Governors from around the country are on Capitol Hill today advocating for GI patients and care. Follow along #ACGflyin • . . . . . . #inflammatoryboweldisease #IBD #crohns #ulcerativecolitis #colitis #INDcolitis #IC #inflammatorydisease #ostomy #ileostomy #colostomy #jpouch #crohnsdisease #autoimmunedisease #Digestivediseases #CapitolHill #Gastroenterologist #WeNeedCureS #WeNeedTreatments (at United States Capitol)

[empoweringpts9]

REALNESS: Let’s talk appearance. It’s been on news overseas lately and is regularly on my mind anymore. I have an extremely important event coming up, and it continues to bring this topic to the forefront. Every single day I think it can’t be worse, but it does. My hair is falling out soooo fast that it’s crazy. I don’t know what pants will fit me from day to day, and shirts are just the same. I’m still exercising and all, but nothing is changing for the better because the roids and such are still in my system. Between the disease pain, the pain on me from this swelling pushing my painful areas, and the mental pain, my appearance is a struggle. I don’t even know what dresses fit or not anymore, for the important event, and I’m not going to buy more not knowing how my body is going to be next week. I’m trying to figure how I’m going to handle seeing people that are going to talk with me and haven’t seen me like this too. Watching my hair fall out when I’m doing everything possible and I’m supposed to have flowing hair, is hard to deal with. I literally pick up wads of hair throughout the day. I’m taking biotin and vitamins. Just last year my Drs and hair girl were commenting on how nice my hair was getting and filling in. Not anymore. There’s not enough contour in the world to hide these roid cheeks and chin, or belly or... I won’t even let my friends see me like this. How do you deal with these types of situations? . . . . #IBD #DevilsTicTacs #mentalhealth #cheeksfordays DYNAMO #MoonfaceForDynamo #ShowMeYourMoonface . (In photo: me circa 2009, Late October 2014, Early March 2018-bigger since photo). . . . . . #inflammatoryboweldisease #IBD #crohns #ulcerativecolitis #colitis #INDcolitis #IC #inflammatorydisease #ostomy #ileostomy #colostomy #crohnsdisease #autoimmunedisease #makeup #photography #prednisone #entocort #corticosteroids #devilstictacs

[empoweringpts9]

Reposting my own post from exactly a year ago, since I just had another #CTE done. ・・・ After any oral #xray contrast, I have a tradition to go to a breakfast place. I have to have a glass of chocolate milk (funny since I rarely have anything chocolate) to help flush contrast out and clean my palate. My parents started this "tradition" with me years ago. Any habits to get you through testings? • • #IBD #inflammatoryboweldisease #crohnsdisease #crohns #ulcerativecolitis #INDcolitis #ostomy #resections #jejunectomy #digestion #PSC #primarysclerosingcholangitis #absorption #ileostomy #colostomy #CTE #enterography #autoimmunediseaseawarenessmonth #autoimmunedisease #CTenterography

[empoweringpts9]

What are your tools and tricks to deal with the #steroid “look” during important events, knowing you’ll be interacting with others and photos will be taken? . . . • (Images via google search words prednisone, corticosteroids, devils tic tacs) #inflammatoryboweldisease #IBD #crohns #ulcerativecolitis #colitis #INDcolitis #IC #inflammatorydisease #ostomy #ileostomy #colostomy #crohnsdisease #autoimmunedisease #prednisone #entocort #corticosteroids #devilstictacs

[empoweringpts9]

It's #RareDiseaseDay, so we spread awareness for #RareDiseases! •One of my rare #diseases is #PSC. I was diagnosed in #2002, and I recall the phonecall from the liver #GI. "You're a newly diagnosed liver disease patient." Um what?!? This call occurred after the results from an #ERCP and #biopsy. •PSC is thought to be an #autoimmune #liver disease, with no known #cure. It’s the inflammation and narrowing of the bile ducts, which can result in hardening. There is a possible connection between IBD and PSC. We keep an eye on any visible changes, seen on testings, to my liver and #bileducts. We’ve been watching a sclerosing (hardening) area for years, and luckily it’s staying roughly the same size, for now. . . . . #primarysclerosingcholangitis #rarediseaseday #rarediseaseday2018 #PSCUK #globalgenes #Urso #IBD #ShareYourRare #inflammatoryboweldisease #crohns #ulcerativecolitis #colitis #PSCAwareness #WeNeedACure #autoimmunediseases

[empoweringpts9]

**ALERT** Do you have #urinary system issues? Has your dr never discussed the connection between #IBD and inflammatory issues in the #urinarysystem/#interstitialcystitis? PLEASE make sure you speak up and gain a referral to a #urologist! Even at the urologist, SPEAK UP about the connection, as it’s not talked about often enough yet. It’s especially important if you’ve had any intestinal surgery. There’s help! . . • #inflammatoryboweldisease #crohns #ulcerativecolitis #colitis #INDcolitis #IC #inflammatorydisease #ostomy #ileostomy #colostomy #surgery #resection #colectomy #stoma #crohnsdisease #bladder #UTI

[empoweringpts9]

Do you ever look at pictures of yourself and say “I miss that person,” even if the photo was recent? . . . • #IBD #inflammatoryboweldisease #crohns #ulcerativecolitis #INDcolitis #autoimmunedisease #mentalhealth #INeverLookTheSame ##

[empoweringpts9]

I did my next #Stelara injection, the other day. The steps I take to do this shot are easy. ✔️Take out of fridge ✔️Check label/Rx ✔️Check warm label ✔️OPEN ✔️Inspect medicine label ✔️Check medicine clarity ✔️Alcohol area of injection, on my belly ✔️Take rubber needle cover off ✔️Inject medication until the spring engages ✔️(I place the rubber lid inside the engaged/spring covered needle head) ✔️Place alcohol wipe over injection site. • . . #autoimmunediseases #IBD #InflammatoryBowelDisease #crohns #ulcerativecolitis #immunosuppressed #Biologics #rheumatoidarthritis #RA #organs #WeNeedCureS #injection #ustekinumab

[empoweringpts9]

Oral healthcare. As my disease processes have continued, my oral health goes through its stages. I was never forewarned about the damage that would come from #medications, #dehydration, corrosion from #GERD, let alone *just* inflammatory disease. Each year I use my allotted dental insurance either at the very beginning, or the very end of the year (I’m procrastinating going right now). My dentist blocks out HOURS for my appointments, since he knows there’s always work to be done, and it’s not my favorite place to be. . . This photo is of X-rays a few years ago, before he dove in for that session. All of the smooth white is areas that he (or his uncle) has worked to fill in with strong enforcement. I always seem to break them though, as the root cause is still within my body and tongue. . The next photos are of something I’ve been living with on/off for years, but has been continuous for 1.5yrs. This is #geographictongue. It’s not glamorous. It burns. It hurts. It’s irritating. It cycles through starting small and then HUGE. The only way to try help it, aside from getting inflammatory diseases under control, is to massage a thick steroid cream directly on it. It sounds as delightful as it is. Needless to say, many times I stick it through the cycles. 😉 . #IBD #inflammatoryboweldisease #crohns #ulcerativecolitis #colitis #uc #crohnsdisease #ibdawarenessweek #IBDAware #CCAwarenessweek #Ulcers #psoriasisoftongue #tonguepsoriasis #WeNeedACure #WeNeedCureS

[empoweringpts9]

When I was diagnosed with #IBD, my GI and RN handed my parents this book. I recall my parents reading it cover to cover because who had ever heard the term Crohn’s disease? Thinking back to these trinkets makes me thankful for how far we’ve come with research and knowledge. As my father says “you’ve out researched me many years ago, I can’t keep up.” It’s because something new is always being found out, if it wasn’t, we’d have cureS already! Never too late to learn something new and teach the next person. . . I think we should re-read this and see how much has changed. Maybe each member of #IBDSC can take a passage? Or read this as bedtime stories? . . #IBD #ileitis #inflammatoryboweldisease #crohns #ulcerativecolitis #colitis #uc #crohnsdisease #ibdawarenessweek #IBDAware #CCAwarenessweek #WeNeedACure #WeNeedCureS

[empoweringpts9]

Here’s a peak into part of #myIBD story thanks to @crohnscolitisfoundation . If I could choose more than one option, for all of the fill-ins, I would’ve. It’s not easy for me to “look at the numbers” in these types of graphs. The affects on my finances effect every aspect of my life, on top of the other symptoms I face daily. I need to get better at celebrating breathing, but it’s never enough for myself. . . #WorkInProgress #IBD #inflammatoryboweldisease #IBDAwarenessWeek #CCAwarenessweek #crohns #ulcerativecolitis #INDcolitis #colitis #ostomy #surgery #InflammatoryDiseases #WeNeedACure #AutoimmuneDisease

[empoweringpts9]

I came across another dinosaur. It is pretty neat to look through my old #IBD papers and see the first public announcement about a #biologic approval. Look how far we’ve come with public information releases and the research! . . #Remicade #IFX #Remi #Avakine #inflammatoryboweldisease #crohns #ulcerativecolitis #INDcolitis #Newspaperclipping #WeveComeALongWay #WeNeedACure

[empoweringpts9]

In case you missed it, my day was made yesterday by something seemingly so simple. . . . #OrangeHeart #HeartEmoji #🧡 #BradsBrigade #GoOrange