Bailey in the hospital/long overdue rant! LOL

FIRST BLOG POST IN A WHILE....Bailey in the Hospital

The following post was started as a response to a fellow JA mom's FB post.  However, it ended up much longer ..... kind of a self-help therapy session/long overdue rant/release of steam/update! LOL Anything before this (and after last blog below...) has been on Facebook Page.  I haven't felt like blogging here in about a year, even though much has happened, sorry.... But please know - your continued prayers for us always have been and always will be - Greatly Appreciated!!!

 Kim Smith - regarding your post about more advocacy - pm me the specifics.... I KNOW I should KNOW, but over 10 years my emotions have gone so far up then so far down and battling physically, emotionally & spiritually for so long and to keep having more things/problems/diagnoses etc come.... it's been some pretty hurtful blows 😒 I have been strong and confident but I am also weak/tired/angry/discouraged/worried/depressed and - Fed Up!  .... I haven't wanted to really be a part of the "JA community" or "Claim" or even "Share" in quite a while now, but these "current circumstances", are making me believe/realize, that I should again.... especially after reading your post about insurance companies.  I'm also, Upset that our insurance company (same one/policy we've had since before, Bailey was born, 12 yrs ago...) switched their "prescription/specialty meds" company/"supplier" a couple years ago - to save them money) regardless of how it affects us... and so we have to have the meds (Remicade) and all supplies (from mixing solution, IV pump to tubing, syringes, needles, bandaids, epipen --- everything) shipped to our house... and then because of "Childrens Hospital" rules---they won't accept "outside" meds/supplies--- so she has to go to an office type bldg (not even a Dr office) on 280 where there is just 1 room, 1 patient at a time, mostly adults (we've only seen 2 people in passing) nothing "kid friendly", actually quite boring.... and actually kinda depressing... where all of the years before - since age 2 & 1/2, (even before the Ped Rheum Clinic/Infusion Room was built)...she did her treatments (wether weekly or every 4-6 weeks) AT CHILDREN'S HOSPITAL, (then the Infusion Room when it was finished being built 6 months later)... where she was around other kids like her going through some of the same things, nurses specializing in kids and these procedures/meds... Ped Rheum Dr. right there...and kid friendly atmosphere, lunch/snacks, cartoons, coloring, face painting lady that would visit often while they were getting their  meds/IV's... etc... SOOOO much more relaxing & calming.... she always had a smile on her face and usually brought encouragement and/or smiles to others there as well - kids and staff...
It "seems" like she kinda helped - "bring awareness/pave the way" - spreading awareness about JA... sharing her story and sharing each upset/problem that popped up with her body along the way and the different routes taken to combat these "surprises/"rare occurrences " - connecting with other kids/parents through her blog page... answering emails we received (some from different countries) kids saying how seeing her get IVs, treatments, methotrexate shots, procedures etc... have helped them and gave them courage to do the same... encouragement for kids and their parents of how she has gone through these things (with a smile & positive attitude) and what they could expect etc...   But... then Kinda  - "seemed/felt" like she was a "poster child" for the arthritis foundation & the new Ped Rheum. Clinic/Infusion Suite & spreading the news about this disease and how it needs so much more research and awareness... and how great this all was for other kids from Alabama -GA-Florida etc... that had to travel here just to get to see an actual Pediatric Rheumatologist/Specialists... she was Jr Honoree a couple times / her story/video/blog/newspaper articles/ online articles/sites with other groups/ pictures for magazine article, etc... used for the walks/kickoff luncheons, corporate sponsor events, fundraisers etc........ and all that was fine--- we would totally do it all again to help raise awareness and help find a cure... especially since the Arth Found helped us to get to the National,Yearly, JA Conference the first couple years after diagnosed... the educational classes we took there gave us so much more understanding and awareness - and Hope... about this disease... and it was fun/nice/encouraging - for Bailey to get to see and meet other children like her... going through some of the same experiences as her... the good and the bad... and for our family - being able to be more educated/more prepared of what this disease can/may do... and to do all of this, in a Fun/Encouraging/Special - way for the kids... was really nice.  But not being able to afford to go to these conferences, for the last 8  years,  has become discouraging... almost like they were "done" with using her story/pictures/videos... and moving on to another kid and forgetting all she had been though and done for the awareness... and how since several issues with her were "rare/not textbook"/ some things they had thought/diagnosed/assumed...wouldn't happen, did happen... (not that we blame Drs at all!!! We understand - now - how crazy this disease can be and how different it can present in different kids.... and how - most all - of Bailey's Medical History, ends up a "mystery/rare/extremely hard to diagnose, explain, treat..." just like now - while she's been in the hospital  off and on, for over 2 weeks in pain, vomiting, not being able to keep any food/drink down... loosing weight... facing possible feeding tube... - Miserable...(physically & emotionally)... anyway... we're All "human" and Non of us know,  the "exacts/answers/fixes, etc.... we just try and do the best we can with what we know... believe me - we are thankful for the quick diagnosis and care she has received).    But do feel that these yearly conferences - that are - "SUPPOSED to be... Help/Fun/Encouragement/Educational... - FOR JA Kids & their Families".... - are really only for privileged ones who can afford them each year. They want JA families to raise awareness, do walks, raise money etc.... but yet families still can't afford to go to these "conferences" - that "they put on" and are "supposed" to be put together - just for them.....???  Something's just not right with that.

Also, since most of JA is silent/inside the body/joints/eyes/organs... not seen much by others or harder for people to see-believe-really understand... it gets discouraging... sometimes it can FEEL like people are thinking - "its just arthritis pain/a little stiffness or soreness"... "it's all in your/or your child's head"... "It's Not a Serious condition", "its not a true Chronic Illness", "it shouldn't stop them from normal growth, activity, learning, shouldn't Really,  affect them - physically, mentally, emotionally, spiritually"....  like "you're/they're making a bigger deal of it than you/they should be"... With not being considered as a true "disability" - (we are first taught, at the conference, to...Not "tell/teach them/refer to this... as a "disability" - don't give them "special treatment"... make them believe that they are the same as everyone else and can do what everyone else can".... so that's what we did.  And probably to the extent of NOT sympathizing with her enough and being tougher on/expecting more from her - than a normal/healthy child.   And now, being through ALL we have been through over the past 10 years... seeing/dealing/living through/and living - With - all of the "extras"/"rarities" that have - seemingly come out of nowhere along the way... when we weren't prepared for and told we didn't/shouldn't "expect" ... Because they were "rare" and 99% chance they wouldn't happen..... Yet they did..... and More.  (Again, not blaming on anyone or anything... the Drs/us/parents... can only go on the past research... and what has worked for some, or what new meds are being "tested/tried/in the works/trying to get approved.... but also recognizing - that small %... "Could" Happen - and - even More - than what they've seen/experienced/witnessed/dealt with/heard of etc...   Recognizing all of this Doesn't make it any easier.... just shows that we are all Human - and how bad -  Research and Awareness are Needed!!!

And people/the world,  need to be made aware that in JA kids - their immune systems HAVE to be suppressed.... they are much more susceptible to catching flus/viruses/and serious medical conditions/problems---- and unfortunately - they can get 100 times worse and it can take 100 times longer - to get through/over - than kids without autoimmune diseases.  Not to mention all of the other complications/ side effects/dangers/risks... that go along with this "disease" - AND - also the dangers/risks that come, "with"  or are just "side effects" of the - Medicines themselves... the Biologics/Chemotherapy/Immune Suppressing/TNF-Alpha Inhibitors and other special medicines used to "help with the symptoms" or "treat" their symptoms.... as there is currently still No Cure.

As JA Parents.... we  will probably - always - have these concerns/struggles/worries/fears.... not knowing what the future holds or how long our children will have to suffer... or how long will it be until the world - Really - Accepts, Truly - Understands & Starts To Recognize the special "needs" they may also have -  even though some of them may "look" fine - on the outside, don't "currently" wear braces, in a wheelchair or confined to a bed... this illness and All, that it can entail... IS Serious.   And, "RECOGNIZING" - And - "CARING"  enough... to stop - and wonder  --- Why we can cure "most" people with Cancers ---- yet we can - NOT - cure this?!?    There is NO - KNOWN - CURE - for our Babies...... and Yes... the World --- NEEDS - to "REALLY" ---"HEAR"--- "UNDERSTAND" --- and "THINK" - about this.

I also understand now, that no matter how we chose to accept, ignore, not believe, refuse/rebuke, not claim, suppress.... this nasty disease.... it's still "Here"... it's very "Real" ... and unfortunately, it's something we - WILL/DO - Have to Deal with.... at least for now... and seeing your child suffer in pain, begging for help/pain medicine, not eating/drinking, having to be "cleaned out" in various ways- from top to bottom, for scopes, continually vomiting harshly to where their ribs and throat are so sore they cry....
And, they're asking - "YOU" - (the person who is supposed to be able to make everything better/ok).... "WHY - this is happening to them .... and ... WHY - won't this just go away?!?!?"
... and wondering "why" - with several Drs and many different tests, nasty medicines, procedures, sticks... they have put her through... they still aren't able to quickly "ID the cause" and then "just fix the problem" ....  does kinda seems Barbaric with our technology today...

The Guilt feelings:
 of me making the decision to stop her meds a few months back... believing she was healed and after 10 years of these continuous strong medicines... desperately wanting her to just be able to experience life without medications for once... just abruptly stopping them and declaring healing.... maybe burying my head in the sand... after the first couple months seemed ok... not wanting to See/Believe  the problems/hurts/complaints/emotional changes/... then the cells attacked the eyes again... just trying to use the usual dilating and steroid eye drops every hour around the clock didn't help this time.... luckily there was a new, stronger drop to use and after a while, they worked at clearing the eye...(but also cause cataracts and glaucoma).... so knew she would have to go back on the biologics as Dr said....

It felt horrible, knowing that I caused her to have this eye flare again and having stronger meds and so often... but at least we tried... we prayed... we believed... we. Claimed... --- now.....
before we could even restart the meds... all this comes up and puts her through SO much more!!!  Talk about hating yourself--- feeling incompetent... unworthy -  of having this beautiful girl in my life to take care of..... Failure!

One of the Drs mentioned one day, while discussing this... that we really never know- being Off of the meds,  may have "unmasked" this problem... especially if it's Chrons... because Remicade is one of the medicines that they use to help with Chrons - therefore this problem could have been there a while and we never knew it... or have gotten worse... and/so now, if this does happens to be Chrons or related .... they will be able to use more/right  meds to combat it and help with symptoms.... ?  Nice thought.... that this could have happened for a good reason... or God is looking out for us and let this be discovered ...??? Who knows?  Doesn't really matter.... it still Sucks and Hurts that SHE has to go through Any of this!!!! No child should ever have to be put through all of this and what's to come! Last night I was able to comfort her for short periods of time, between pain spells, a few times when she asked me to hold/rub her hand... so I stood by her bed (with my back and knee giving out... and feeling like crap that I could even feel my pain over hers) and did that until she was able to drift off to sleep a short while each time, before waking and asking me if I'd come do it again... I didn't let her see me tear up.... but I hurt so bad for her... not being able to do more for her...

Now - she has been in some serious pain with this... grouchy... rude... downright mean to me here! Lol  yelling at me to Stop shaking/moving the bed- when I didn't even think I was touching it... and to Stop rubbing her back because it just made pain worse... etc..... 😳🙄  But then later - she apologizes that she said those things.... she was just hurting so bad... ☹️ I tell her .... that's ok... I'm not going anywhere... and that's just part of what Mamas are here for 😊.

Ok .... I'm done "ranting/raving/complaining"....  guess I'll feel fear/failure of some kind, all my life.... think we all do - some just stay hidden better/longer... But I have SO much to be thankful for!😇🙏 So... Time to get back up again ... and try harder... 😊