Monday, August 28, 2017
As I am writing this, I am less than 24 hours away from my 4th 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.
Saturday, July 1, 2017
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.
Friday, February 3, 2017
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 9th. 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!
Monday, January 30, 2017
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.
Sunday, November 13, 2016
Parker asked me why I haven’t blogged lately. I told him that now that he is older, it really is his blog and his story and I didn’t want to say things that he may not want shared. He asked me to please blog and tell everyone what is going on, because he has such a hard time staying awake lately and because it is OUR story…our family’s story. So here I am, writing, and realizing I have also been avoiding voicing out loud that this life with autoimmune issues has been so very draining on all of us.
I have been going through all kinds of tests due to my own autoimmune issues. Logan has been flaring for about a month and like me, I think he is trying to avoid more medications. And Parker seems to conquer one thing, just for another issue (or two or three more) to arise. Michael and I are realizing we barely have time for much else…we want to work on our house, which has been neglected since this journey has begun. We want to spend time with friends, but barely have down time. And the thought of adding holiday decorating to our to-do list is just one more thing to do…and yet, we want to because the result is joy and a reminder that life is precious.
We want to keep celebrating life’s joys, create simple moments with beautiful memories, and keep a focus on what is going right. And yet, we know, that all of you want to know what is going on with Parker. And somehow, writing is all down, brings it to the surface. I realized yesterday, as I spoke to a friend, that I have been trying to smothering it all down inside of me in my efforts to stay as joyful as possible.
I feel like I have lists upon lists…So here it goes…Parker’s “list” of medical needs:
- Parker’s blood labs have been up and down. Some are decent and some are yo-yoing.
- His uric acid is high. He sees a new doc, a nephrologist, next week. This is doc 18. It is possible that this is due to one of his meds, which we have temporarily stopped and will re-run labs this week. Or his kidneys are somehow being affected by this mean disease.
- Despite all the things we have tried to do to help his SI joints, they are still bad. He is having another MRI, at UF Shands, in the near future.
- He is still thinking about continuing the nerve ablations…this is a tough one because he was awake for the last one and it was horrible, but it did help.
- We think he has a leg length discrepancy, so a scan-o-gram is ordered. His bones will be measured and he may need a lift in his shoe. Let’s see how that goes since we still can’t get his shoe orthotic inserts, post-surgery, approved.
- He is having blood pressure and temperature issues after showers and doc wants him to go back to cardiologist, which is two hours away.
- We need to remove his port in the near future because he has grown out of it and it is pulling.
- He needs to go back to his regular ophthalmologist because his eyes keep getting really red.
- He has a swollen area on the side of his neck. So, we have an ultrasound scheduled, since it is near lymph nodes and thyroid.
- Doc is trying to get a new med and a new biologic approved.
- We took him to orthodontist and he needs invisaline and botox injections in his jaw. Cha-ching… Doc had others come over and feel his jaw joints because he said they were tighter than anyone’s he has ever felt.
- We took him to GI doc (actually Michel did…thank you dear God for this man in my life) due to blood in stools and it is likely due to fissures…whew. Easy solution.
- He is having some pulmonary issues again, so back to pulmonologist and needs to also schedule another sleep study.
- And finally, doc is trying to get him in to NIH with a doc doing genetic studies on kids with multiple autoimmune issues.
Needless to say, this is a lot for a kid to process. He is doing the best he can with the extreme fatigue in his body. And for all those people who unknowingly ask about school…to make conversation…oh my word…it breaks my heart every time. He has various answers for this based on who is asking, but there is always a major pause…The medical stuff seems to consume us. We know and he knows he must get his GED finished, but oh my word, sometimes it just feels like it is the least of our worries. But he will get there one day. When it happens we will have a party.
So friends and family, please be patient with us. We know we don’t connect much and our interactions have been minimal. We wish we had more time to visit, chat, and go out. But please also know, you are all in our hearts each and every day.
Saturday, September 17, 2016
I rarely say what I want…I am more about helping and doing for others. So, yesterday I was debating on if I should dare to really ask all my friends and family what I really “want”. As I was thinking about if I should, Michael changed the station on the radio and the music blared out “I’ll tell you what I want, what I really really want…” I am taking that as a sign.
What I really really want is for the world to know that kids can get arthritis (not like Grandma’s osteoarthritis…you know, the really bad auto inflammatory kind) and I wish there was a public service announcement, so everyone was really aware. But since there is no PSA…maybe Parker’s PhRma Research and Hope Award video could act as a PSA if everyone got on board and helped it go viral. He said what many families who are enduring juvenile arthritis want the world to know. So…what I really really want is for all of you to share with everyone you know this short YouTube video in hopes that it will go viral and JA will finally have a voice.
With a grateful heart,
Rochelle (Parker’s mom)
Saturday, August 20, 2016
So we went to the doctor Tuesday and well it didn't go well. First, I saw the doctor and she told me that there isn't one drug out there that will do what we need it to do for me. She said in order for me to feel better, I need to be on two biologics. The preferred ones being Ilaris and Cosentyx. The main problem now is insurance. One, they won't approve more than one biologic for me even if that makes me better. Two, I'm currently on Simponi and the insurance usually won't switch drugs until I get 2 more doses of Simponi.
This creates even more problems. One being that this drug is taken every other month, meaning it would be 4 months before I can stop taking it. Another problem with this is that the Simponi just straight up doesn't work for me. Also my doctor told the two month span between infusions is tough on many kids. She said she could try to get the insurance to move my dosing to once a month so I can be done sooner, but that’s still 2 months before I would stop taking it. So she is likely going to take me off of it all together since my systemic issues are returning and those issues are more dangerous.
I was also told that my SI joints are doing very bad. She said that even if the nerve ablations work and the SI joints don’t hurt, they are very inflamed. Now normally I don’t care what my joints look like as long as they feel good, but this time is different. My nurse told me that if we don’t treat it soon (meaning switch to a med that WORKS) they could be permanently fused and I would walk hunched over for the rest of my life. I know my doctors are doing the best they can but I can’t help but feel hopeless.
We even talked about the NIH (national institute for health) and my doc is willing to try to get me in. But she felt that because I am such a rare situation and there aren't many like me with these overlapping conditions that there isn't enough of a sample size to do a study. That was hard to hear.
My doc told me she prefers to take me off the Simponi and fight to get back on Ilaris. Ilaris is an IL-1 blocker and that is what is needed for my systemic issues with fevers, rashes, and internal organs. However, I really also need a TNF blocker due to my ankylosing spondylitis, which is inflaming my SI joints and causing my back and neck issues. I just hate insurance right now and I feel hopeless. And I was finally feeling like I was #strongerthanja.