Just a Bit of How Things Are…

I know we have been quite … Parker has not been feeling well at all.  As a mom, it is incredibly hard to watch your child struggle day after day.  I keep thinking, tomorrow will be better…we are going on two really rough weeks with loads of inflammation and some adrenal issues.  His adrenal insufficiency can be pretty scary and every time this starts up, I feel my heart squeeze so tight it hurts.  We came so close to losing him with one of his adrenal crisis episodes and I tell myself we are better equipped with both knowledge and meds now, but I still get scared. 

Parker is now taking a stress dose for his adrenal insufficiency because he might also be fighting a virus.  And he is also taking meds for his pain and inflammation.  During these last 2 weeks, he has barely been out of bed.  The balance of helping him move so he doesn’t hurt more from being stiff, and the balance of not moving too much that it makes things worse, is quite delicate.  And I admit, I am not sure if we will ever master that.

It’s been hard for me to write blogs lately…I have wanted to allow Parker to tell his own story.  But when Kristen was here for her extended stay, she and Parker told me that a mom’s perspective is also valuable and they encouraged me to blog more.  The thing is, it makes everything so “real”…and I keep thinking and praying that Parker will get better…in some ways he has but in other ways, well… It is just our reality. 

So I cry in private on the really hard days; and I try as hard as I can to be “normal”…going to work, helping others, being as social as I can, and sometimes just being quiet and to myself.  On the “good days”…I just want to do everything we can fit in because I want so badly for Parker to experience JOY.  Of course, there seems to always be a price to pay for joyful interludes. 

Having a child with chronic illness can be quite lonely…because it is chronic, conversations are hard.  Parties are harder… I don’t know if other moms have these moments too…where you stand in the middle of a room full of people in a buzz, usually for a joyful gathering and you feel totally alone.  It is the weirdest thing ever.  I don’t know how to begin conversations anymore.  And I don’t think people know how to converse with me.  And sometimes, I avoid … because it is easier, less exhausting.  It’s like I am holding onto my reserves.  Just this week, someone asked about Parker and when I started explaining his surgery it turned into “oh, I have arthritis too”….and I got to hear all about how this older woman had it so hard.   Then, I felt horrible because I think she has no idea how her comments hurt …but that is just it, so many have no idea.

And let me tell you…all you moms with young ones with severe chronic JA…well, when 18 hits…watch out.  My world is a bit upside down.  18 makes you reassess, plan for the future that you were certainly not prepared for, and oh the paperwork…  I know not all kids are as severe as Parker, but whoa…this 18 years old stuff is something:  Do we do permanent disability?  Then there is Medicaid (or will there be…)?  Will he live on his own; or should we get a home with a separate apartment or mother-in-law suite? How long should I work?  Will he work?  Will I run out of sick leave?  Will we ever take non-arthritis related trips/vacations?  Do we remove his port and put a new one in or not?

And then I remind myself…I can only do what I can do in a day.  So, we do what is needed in the here and now:  Like buying two pairs of shoes, because one foot needs a nine and the other needs an 11 due to the ankle/foot orthotic…Or bringing the puppy up on the bed for some Parker cuddle time and a joyful moment…And making a yummy snack of yogurt, granola, and berries because Parker will eat that.  So I admit, these last 2 weeks have been really hard and we could really use some better days in the near future.

4th Foot/Ankle Surgery by Parker

As I am writing this, I am less than 24 hours away from my 4^th foot/ankle surgery. I am actually excited for this surgery because last year I had the same surgery on my other ankle; and since then I have been walking more. So, I know this will help, but part of me can’t help but be a little nervous. However, I am not nervous about the surgery but what I am nervous about is the recovery.

The recovery for this will be anywhere from 2-4 months. I will probably have a cast on for about a month, then a boot for another month after that. Next, I will have a brace that goes up to just about my knee for a month, then one that just goes above my ankle for another month after that. Meanwhile, during this whole process, I will be doing physical therapy. The part that is the most annoying to me is having to shower with a cast. Luckily, I have done this before so I know what I’m getting into.

So I sit here thinking to myself, how am I going to do this?  The first thing that comes to my mind is one of my best friends in the whole world, Kristen (Kmac), and how she is the strongest person in the world. If you didn’t know, Kmac ended up paralyzed due to her arthritis. Now she lives her life in a wheelchair. But that wheelchair doesn’t hold her back. Kristen still lives her life to the fullest whilst being completely independent. But the reason that Kmac is the first person to come to mind is because of something that she said to me earlier this year at the Houston arthritis conference. What she told me was that before she was paralyzed, she was in constant pain but at least she was able to walk; and now that she can’t walk, she isn’t in constant pain. It was what she said next that truly inspired me. She said that she would go back to being in constant pain if that meant she could walk again. So for the rest of that trip, I refused to use my wheelchair when I was with her (which was all the time), because I felt that since I do have the ability to walk; I should use it no matter how much pain it caused me. On the last day of the trip, Kristen came up to me and told me that she was so impressed that I walked the whole trip even though it caused me to be in immense pain, which meant the world to me. She then said that she wanted me to use my wheelchair that day. So I did and that trip made me realize that I am capable of far more than I realize.

The next week I went to camp to be a counselor and I decided that I wouldn’t use my wheelchair for the whole week. And you know what I did? That week I may have had to take extra meds but I walked a total of 60,000 steps. That was even more than my dad had walked that week. So at the end of the day, I want to thank Kristen for giving me the strength to get through this upcoming surgery tomorrow. And to you, Kristen, if you are reading this, in my eyes you are the strongest person in the world; so keep fighting and I love you girl.

Happy JA Awareness Month

 

Juvenile Arthritis Awareness month has officially begun…The years seem to loop back around quickly and I feel a little bit like a broken record; but we desperately need a cure.  We have been a little quiet lately, not knowing what the future holds, trying to make big decisions, and wishing there was really big progress around the corner.  Parker has been in, what feels like, a holding pattern.  Every month, when we refill his cosentyx (now on for nearly 6 months), they ask if symptoms are improving, getting worse, or staying the same…I say staying the same.  They say great.  And then I say but same is not great…it doesn’t seem to have helped him yet.  He is also on Rasuvo (auto inject methotrexate)…but that darn med makes his leg go numb, so we don’t know how much longer he is going to use it.  Docs, nurses, and pharmacists all say that is not one of the side effects…I beg to differ because, at least for Parker, it is. (And by the way, he tried the other auto inject of otrexup and the numbness was even worse).

I am a little more worried these days, wondering what the internal organs are doing.  He has had many issues since my last blog post.  Gastrointestinal issues (possible crohns, but meds might be masking it), Kidney stone that had to be blasted out, many flares with fevers and rashes, the never ending battle of pain, adrenal crisis twice, possible dysautonomia flares, and the need for a re-do on this right foot/ankle/tibia.  He now has surgery scheduled for August 28.  The surgeon will be fusing that foot like his left, with 3 bolts.

Through it all, Parker fights with his driven spirit and is balancing these not-so-fun medical issues with real fun.  He is part of a large campaign that will launch later this month (yes, that’s a little teaser); he was selected to be a “Leader in Training” (LIT) at Camp Boggy Creek for cancer week; and he is gearing up for his first year at the JA Conference as a “young adult”…Yes folks, he is turning 18 on August 5.  I still can’t believe my kids are now both adults.

My Monthly “One Moment” with the Specialty Pharmacy

Filling Parker’s SPECIALTY meds is really a very special kind of experience…I know you all want to see through my lens for a moment…don’t you?!

You know, because Parker is extra SPECIAL, his meds can’t be filled at the local walk-in kind of pharmacy…on no…they are mailed on ice in these little white styro-foam coolers…and every month, I think, how many igloos are now in our landfills.  And I think we have more ice-packs than food.

A call to this very “special” pharmacy goes a little like this…

I dial, then hit the many prompted numbers to get a person, then the kind voice on the other end asks how they can help…thinking they can…but I know that they can’t…and I am about to cycle through at least 3 people…but today was an extra kind of special.  I got to talk to 9 people  … most of who were totally helpless…because their system is BROKEN.

So the first person says “one moment” and puts me on hold…and I get to listen to their jazzy little beat (ba-da-ba-da…bit-dit-dit…bit –dit- dit…do-wa).  That little loop is 30 seconds and it loops and loops over and over.

So I put my phone on speaker and go about my business because I know it will be anywhere from 5 minutes to 10 minutes before the first person will begin assisting.   But I get to listen to that jazzy little bit…

I get the second person and I explain again that I need to speak with someone who can fill HyQvia from the IVIG team (because I know that with this script on the list, even though there are 2 others for today, I can’t "pass go" until this one is filled.).  I hear “one moment please”…cue 5-10 minutes of jazzy little bit loop…

“Hi, who am I speaking with?”  I run through name, parent name, DOB, address… “I see you need to fill Ilaris, Otezla, and HyQvia, but I need to get you to the team that can help you.”  I ask what team I am with and am told, Rheumatology.  I tell her “wait, you can fill the Ilaris and Otezla”.  She replies, “No mam, I need to get you to the correct department, I can’t fill the HyQvia. One moment please.”  Cue jazzy little bit….

This time, about 15 minutes later, I get a grumpy lady who is asking questions at a quick time speed of that jazzy bit.  She fills the med and is acting like she is done…I am like “wait…there are supplies too”.  I hear “what do you want”…I kindly explain that all the supplies that I got last month were wrong and luckily I had extra supplies on hand and was still able to administer the infusion.  But I must get the right supplies this round because I don’t have spares.  I ask her to fill the same as December’s supplies.  Again she acts like she is done and wants off with me as quick as possible…”oh, I am not done…I need to fill 2 more meds”  and I explain I need to be transferred back to the rheumatology team.  “one moment please”….cue jazzy little bit for another 5 minutes….

I get the next person and they can’t help out at all…”This is a specialty med mam, I need to transfer you to the team who can help. One moment please”…by now I am laughing because I just have to…(ba-da-ba-da…bit-dit-dit…bit –dit- dit…do…….silence……disconnected).  Here I go…onto repeat mode all over again.

I dial and literally get to go through this all again.  I explain what I am calling to refill and that the HyQvia has been completed and to PLEASE transfer me to the rheumatology team….”One moment please.”  Ok, let’s be real, we all know by now that it will most certainly not be “one moment” and I now officially hate jazz.

And… even though I had explained that I already filled the HyQvia, they transferred me there again.  Guess what, I start laughing because this is too funny not to laugh at (45 minutes later from my initial call).  I get the guy to laugh and he transfers me to who can help, with a sweet “one moment please”.  Cue jazzy irritating bit…

Oh the poor woman who picked up the line…we both didn’t know that I had had enough “moments”…She was with the main refill line, not the rheumatology team and when she said “one moment please”…I said “No, wait.  I really don’t have any more moments to spend trying to fill these scripts.  I need to speak with a supervisor.”  I know I took her off guard.  Because she said “I can’t fill these meds.  They are specialty meds.  I need to get you to the team that can help."  I tell her that I have been trying to fill these scripts for an hour now.  She says..."an hour?"  I explained and then tell her that my son is on a lot of “specialty meds” because he is one special kid and I work full time and I am a mom who is trying to help my child.  And I demanded that she get me to a person who can actually help me complete this order.  She apologizes in a very flustered manner.  I actually feel a little sorry for her, but I stand firm and say I need to speak to a supervisor.  Poor thing…she said “one moment please”….jazzy bit plays and I am now an hour into this.

When she finally comes back on 10 minutes later she says, “I have someone who can assist you”…I say I so hope so and we both wait…silence…I say “hello?”  and the poor soul I let have it says, “Oh my gosh, we were disconnected.”  And she sounds like she is going to cry.  I find myself counseling her, saying it is not her fault and that their system is broken and I don’t know how any of them can work there.  She says she WILL get someone to help me and she told me to hang up, and she would have someone call me back so I wouldn’t have to be on hold.  Halleluiah…No more moments with that dreadful jazzy bit…

John call me back, fills the final meds.  Then explains to me that Parker’s in a very special group of patients with a lot of meds and supplies and there is a note on his file that says “don’t fill, send calls to the IVIG team”…I explain that I already know this and no matter how much I try to help them on the other end of the line to do this correctly, by first going to the IVIG team, and then to the rheumatology team, I always speak to at least 4 people… but today he was my 9^th.  We got through the order and then he said I could set up his records on-line and do his orders over the internet.  SIGN-ME-UP…But…I will still have to call for the IVIG and new scripts.  Well, at least this is improvement…right?

I tell him that I am thankful for this partial solution and then he gives me his direct number for the future and says that if this starts happening again when I call in, that I can call him direct or even have the team text him; and he will call me back and help me fill scripts efficiently, so that I can work and take care of my son.  I tell him I look forward to him helping me in the future … and we both knew that this was probably true because their system doesn’t work in our favor and we will likely talk again.  He admitted that patients like this fall through the cracks and that it is wrong and he hopes to correct it.

I know this is a long rant…but I want other caregivers out there to know that there is this solution. Also I want those with healthy children to be grateful that all you need to do when your kid has a need for a pharmacy is drive down the street.  That is truly a gift.  1 hour and 45 minutes later, I am grateful for these meds that keep our child ALIVE!

A New Diagnosis…A New Biologic

So much has happened and yet it feels a little like time stands still.   Since Thanksgiving, Parker has been struggling.  Even with his multiple nerve ablations, he still has much lower back pain. In addition, he is incredibly fatigued.  He did repeat MRIs and unfortunately, since March, this darn JA has progressed even more.  He officially received an additional diagnosis in November of Anklyosing Spondylitis (AS).  The doctor is very concerned that while we have been treating his systemic JA, the AS has progressed.  So she started talking about a change in treatment.  Of course, any time there are med changes it is scary.

In the meantime, 2 labs were not too good.  Prograf (anti-organ rejection drug) has been working really well for the past 3 years, but now it is affecting his kidney.  So, we had to stop it.  He is now on otezla and they have seen some kids with psoriatic features do well on this.  So we are giving it a try.  In addition, his immunoglobulins were low, even with the IVIG he gets monthly (infusion of blood plasma).  So they increased the amount.  We are hoping this helps boost his immune system.

Then in December, Parker had blood and mucus in his stools.  And we had an appendicitis scare, that was actually swollen stomach lymph nodes.  This has happened before.  For some reason, the systemic JA tends to attack his lymph nodes.  In addition, the lymph nodes in his neck have been large.  We did an ultra sound and it was confirmed.  There was also concern about his thyroid, but that looked ok on the ultra sound. Endocrine is now running thyroid labs and glucose labs (because those were elevated last round).

So, in early January, Parker saw a GI specialist who immediately did a scope.  The scope came back good with no explanation for the blood.  The only issue was his esophigils were elevated, which may mean that his body is responding to the corn he has been eating.  Allergist cleared him as no longer being allergic to corn, but now those labs have been added to his list of tests.  It might be an intolerance response.  Although inflammatory bowel diseases did not come up on the scope, we are going to keep an eye on this because he is at risk with all his issues.

Finally, we thankfully got approval for the new biologic, cosentyx, which is going to target this AS issues.  We are hoping that it will somehow help his systemic JA as we don’t know if it will or not.  It is an IL-17 drug…for those of you who are wondering.  It looks like he may have to stop Ilaris which has been keeping his systemic internal organ issues with his heart and lungs, fairly quiet.

So all of this has been going on while I had an MS scare.  After 3 docs said I could have MS I went through a series of tests and I don’t.  Thank God!  They believe that I have been experiencing something called Hoshimotos encephalopathy.  In addition, I was on B12 injections from when my Graves disease was active, and now I am in Hoshimotos mode.  My body had too much B12 and that is not good.  Since stopping it, some of my symptoms are much better.  My thyroid has not been nice and neither has my own RA.  So if I have not gotten back to you…all of this is why.  I so apologize.  I am working on removing as much stress as possible for myself and inserting as much JOY as possible for Parker and our family.  Love you all and thank each of you for never giving up on us.