As some of you know, I’ve sat on the Arthritis Foundation Leadership Council Board here in Chicago for a few years now. In that time, I’ve met a lot of really wonderful people who share a common passion… To spread awareness of and eventually find a cure for Arthritis; in all of its nasty forms. Speaking of which, there are currently more than 100 different forms of Arthritis recognized by Rheumatologists throughout the world.
Among some of the inspirational people I’ve met along the way is Courtney Smith, the producer of the award winning documentary Beauty Does Lie: The Untold Stories of Autoimmune Diseases. Courtney was diagnosed with Myasthenia Gravis (MG) at the tender young age of 22. MG is a neuromuscular disease that produces antibodies which block muscle cells from receiving messages from Courtney’s nerves. At times, she is physically paralysed and her body is unable to move or respond because of this blocked communication between the muscles and nerves. Fatigue and muscle weakness are an everyday reality of Courtney’s life. But even after a series of life threatening trials and tribulations, all who know Courtney, know that she remains to live an incredibly happy, upbeat life.
I have recently had the pleasure of being asked to team up with Courtney to co-author her memoirs. I have to say I am beyond smitten with the opportunity. We plan on weaving Courtney’s tragic story into one that will make readers laugh, cry and ultimately be inspired by her incredible, almost unbelievable life story. I will keep you posted as I dive into this exciting project with Courtney. Wish us both luck and send some extra spoons our way. I have a feeling we’re going to need them.
xo,
Katie
Chronic Mum 
Hi Katie! Its Kim, (Bailey’s Mama!),… Just wanted to update (Most on our facebook page though).
Since we had to switch to a Dr office (Adult Rheum), an Hour away (due to insurance Blue Cross & the State Funded CRS (which thankfully we qualified for 2 yrs ago)….. Bailey had gotten Sicker than I have Ever seen! She is usually really healthy through these past almost 5 yr now (since age 2). — BUT when we had to spend the last 5 months there, she stayed sick. I dont know if it was not as sanitary (didnt put sheets on chairs like Childs Hosp did, etc,…. She was given 4 week infusions the entire time! Usually at Birmingham we did 2 weeks, then eventually 4 weeks, then if eyes still clear, go to 6 weeks etc,… Until the 8 week mark where the Uveitis has Always come back! – So,… after a couple months,… she had a cough,…(Not really anything like a cold! Just a couple coughs in the AM & PM), but Nurse said throat red, so sent us back home (Hour Drive again),… Then next week, drove down again & cough had gotten a little worse, now had some Phlem involved. They said to come on & they’d check her…… Well,. of course they sent us home AGAIN! SO, by week 3 they told us to go to Pediatrician,… we did. He said she had walking Phneumonia & gave antibiotic! I was like WHAT THE HECK ?!?!? She never gets sick! She’s NEVER even had 1 Ear infection like most kids do!!!!! SO,… after the week, we drove down again & they said well, lets do a chest xray first,… they did & said it looked clear, but to go home & wait again. By this time I was Def NOT trusting that place….. so I took her back to Ped & they said she still had NOT gotten rid of the Walking Phneumonia & gave a 2nd antibiotic for 10 days….. well, a short while later (this past few weeks)….. She had a sore throat, next AM woke up & puked @ 6AM, & High fever. Called Rheum,…. He said to call Ped with these things,… So I did & next AM I had her at the Ped office again. – Positive for STREP!!!! another Antibiotic! OK,…. In the meanwhile we got things worked out & was able to come back to original Drs & Infusion room only 15 mins from home! Well,… after the 1st anti & went back to Ped here —- STREP again!!!! He said it was resistent, so gave her a stronger antibiotic…… Luckily it cleared last week & she was able to get the 1st remicade back in Bham! (This original date was pushed back a week though due to being on the 2nd antib…..). SO,… Dr wanted her to have 500 instead of the 400 dose she has had….. Well,. Pump would Not go past the 400 & nurse said it was saying that her weight & age wasnt ok for that doseage,….. No one there to ask, so we stopped at 400. They now have it fixed & she should get the 1st 500 dose on Monday…… Not excited about it! NOW,…. this week, after just being clear of sickness & clear eye exam,….The 1st infusion was on monday & tuesday I noticed her pupils were dif sizes again! Usually if this happens it is a big difference….. well, I called eye dr – He was out of the country,…. Nurse said, well I think it will be fine, just leave it & if doesnt go away Mon call back. – So we DID!!!! Our Opth still out,… so we saw another one there that deals mostly with kids & lazy eye, & surgeries etc,…. (Not the Uveitis Specialist that we normally see). SO he checks & said Yes — the Cells are back & attacking the Left eye this time. (Last few months, when it came back – it was only in the Right eye?!?) SO,… we had to start the Predforte drops again & see our Optha. in 2 weeks….. As we talked more,…. he said that being on these meds 5 yrs wasnt good. If it were his daughter he would take her to my Dr anyway because he is good with Uveitis….. but that after 5 yrs on these Chemotherapy drugs,….He thiks it would be time to change something. —- Yea, But WHAT I’m thinking!?!!? We tried Orencia once & eyes just got worse!!!!! So we keep going UP on Remicade & use the drops (which Dr was also stressing that the drops, although quick to put out the fire/cells,….. it has to be taken away fast since the Inflamation itself AND the drops BOTH caused Cataracts & glaucoma & were dangerous to be on long….. SO,…He told me that it was really good that I DID notice the Pupil difference & catch it early. Well, that felt good —– But didnt help stop my tears that were welling up as i thanked him & went to pay.
Well,….. The Rhem office also wanted me to take her to her Ped after that to get urine problem checked….. (Sometimes she feels full of Pee but only 2 drops come out & occassionaly a burn/itch ….. and Sunday pain strted. SO Urine was OK but sent to culture for a particular calcium test,….
There is more on Facebook,…. but I am just depressed now & just sick of this crappy disease! NO Child should ever go through this! She has been on all this med since age 2 & just turned 7 this past week!!!! She hasnt experienced a childhood without pain & meds, Shots, IVs, etc,… It is SO unfair — She has SUCH a Beautiful soul & so Kind & Giving! She would give you just about anything you asked for that she had…… The 5 weeks she was Late getting the Remicade, …….. this past week she started eating some of the things she did yrs ago (before this crap ruined her tastebuds!),…. It was neat to see,…. but back to square 1 now. She had her Methotrexate shot by me Sun PM,….& now Monday she will go back to Childrens Infusion room for the upped dosage of 500 of Remicade & see what happens……. I will sit beside her in a chair as I have done for 5 yrs & try to stay strong for her. I will bring toys, books, her new DS she got for her Bday last week (after going through 2 used ones she had been given & they broke…) The new one has a larger screen so she can see better….. I will watch the nurses start her IV with Bailey smiling & joking with them & them laughing at her jokes & seeing how amazing she is at starting the IVs — (No numbing med,….. Just do it). She makes sure she tells them where to put it & if they Blew it in that hand last time or not! lol! (seen on one of her short video clips, she tells a nrse that the yellow vein is for food & the blue is for blood so make sure they get the right one! (lol!) I will also sit there & watch how amazing her smile is to all who are in there getting infusions too. She has taken candy before & made sure each child got one AND when a new one came in,… she made sure she gave them one aalso! (We had a Mom of a little girl tell us that, when her daughter went for her next infusion….. She asked if the girl with the candy was here today! lol! Now, this past year she was diagnosed as Psoriatic now (Probablly) – Dr said (due to a scab in her head/neck positive for psoriasis),…. They said that if it gets bad, some kids can even lose patches of hair…… OK,… Another breakdown for Mom! So when she sits by me at home, I just stroke her hair & feel/see how Beautiful her long hair is (She was almost bald till age2)….. Just another peace of my heart ripped out by this autoImmune Disease that snuck up on my baby girl with just a sore knee that swelled overnight 5 yr ago.
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Hi Kim,
So sorry to hear about everything you guys have been going through. Poor, poor Bailey! My heart hurts for your family. It’s just not fair. Have you guys ever visited the Mayo clinic?
All the best and please know that you are in my prayers.
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No we haven’t. Where is that? Family in VA suggested NIH also,…. just scarred I’ll hear the same thing or worse I guess. I wouldnt want to offend any dr here because we are blessed to have them,…. but Yes, as a MOM, I do often wonder if I should get another opinion…… Thanks
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The Rheumatology department at the Mayo clinic is in Rochester, MN. It is ranked among the best in the US by US News and World Report. They also have offices in Florida and Arizona, but pediatric cases tend to be treated in MN. Thousands of people travel from all over the country and the world to see the amazing physicians at the Mayo clinic for a number of different diseases. They even have financial programs to assist those in need or without insurance to cover treatment and procedures. You should honestly check it out… I wouldn’t worry about offending a doctor. Providing quality care for your daughter is your #1 priority. http://www.mayoclinic.org/patient-care/
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THANKS!!!! I have sent them our info & will see if they contact me back about assistance,…
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