Here We Go Again...by Parker

So these last couples of weeks haven’t exactly been the greatest. My arthritis has been at war with my body. I have started getting flares again and that’s pretty weird considering how I was feeling before this flare. Things were really good, I was making it to school almost every day and I wasn’t even using my wheelchair.

But then, all of the sudden, it was like a bomb got set off in my body and that bomb hurt. First it was my lower back, shoulders, and neck that started hurting; so I switched to a rolling backpack. The next thing I knew was my ankles and feet were being attacked. If you look at the picture to the left and look at the red circle, you would probably guess that bump is my ankle. Guess what, it’s not.  That is actually the bone in the arch of my foot trying to push out. This became a problem because I’ve been wearing braces since the surgery.  When I walk, that bone hits the hard plastic and very badly hurts.

In addition to all this, I started having daily fevers again. Now I know that fevers are a symptom of systemic JA but I take a drug called Rilonacept and that drug is supposed to do 2 major things for me. Those 2 things are to keep my pain and swelling at bay and to suppress fevers. So when all this stuff started happening, we were pretty concerned.   

Then, another pretty weird thing happened. There are 2 joints on my body that don’t swell too bad, and those are my elbows and knees. And guess what, my knee got huge this week. Just look at the picture to the right. I mean really, if I didn’t know any better I’d think that was a thigh. The next day I woke up and my knee was still pretty huge.  We called my doctor and she said to go to my orthopedic surgeon to see if he would drain it. So we went to go see my surgeon and he wanted to take some x-rays of the knee before the appointment.  Since  we were there, he wanted to also get some x-rays of my feet and ankles. Well by the time we got up to his office and ready to see him, my knee had gone back down quite a bit. But he still wanted to look at my surgical site x-rays, especially my feet x-rays. And this is where everything went down hill.

If you look at the x-ray to the left, in the red circle you can see what my foot looks like with the cadaver bone fusing with my bone. And it looks pretty good. But if you look at the x-ray to the right, in the red circle you can see where the cadaver bone was located. And well, it’s not there, it’s gone. It was basically rejected by my body and was completely absorbed.

Now my bone has a gap where the surgeon had severed it during the surgery.  And all this time it has felt like the bone is trying to escape my body by pushing out the side of my foot because it is actually pushing out and my arch is completely collapsed again.  As you can imagine, we decided that it’s time to switch to a new drug called Ilaris, as soon as insurance approves it.

So you may be asking, what does this mean? Well, it basically means that the surgery didn’t work in my left foot. And on November 18^th 2015, I go back into surgery but this time to permanently fuse my foot. This was a lot for me to take in and I’m doing the best I can to stay positive. So, I want all of you to remember that you’re never fully dressed without a smile.

Surgery is Done...Now for a Whole New Kind of Torture Full of LOVE

In Pre-Op

Never ever did I imagine my life would take me on this journey…All my life, I have wanted to work with children with disabilities…but never did I think I would have children with disability…I have dreamed of becoming a mother…but never did I believe I would be the mother of two children with chronic illness.  I have hoped to marry a loving, caring husband, but never could I imagine I would partner with the most amazing individual with incredible amounts of love and he shares it all with me and our two beautiful boys; and still he has love to spare.

Some days my brain feels like its on overload.  Today is one of those days.  Mixed feelings fill my heart, giving me a sense of emotions-on-overdrive…I just went from tough mean-mommy, to having a sense of stabbing sadness of what Parker has to endure if he wants to walk, to my heart breaking knowing that he is telling us (PT, nurse and me) the complete truth that he hurts so very bad, to knowing I must muster up that tough love and MAKE him do what he doesn’t want to do because he knows it will cause more and more pain…  I had to make him put those arms with flaring shoulders and wrists down and wiggle and scoot and drag those million-pound legs/feet and lift himself into his wheelchair.  Then the torture continued as we had to then get those legs off that bed and down onto the wheelchair foot rest as tears rolled down his face and “I hate you all” came out of his mouth…But… the one emotion that is emerging more than all the rest is incredible pride in the strength and bravery that Parker is enduring this…because he DID it, he really DID it with splints on his legs/feet, cadaver bones piecing him back together in alignment, and pins criss-crossing through his bones holding it all together and in place.   

I know there are many adults with RA that have had reconstruction…but we only know a few kiddos who have endured some sort of reconstructive surgery.  WOWZERS!  I am so incredibly amazed with each and every one of those kid-heroes.  What they have accomplished is a miracle.  I just watched my kiddo go from hating us to just about doing the entire transfer back into bed, with such determination, that he did most of it with his own strength and not one complaint.  The nurse was shocked!

Gram & Gramp

This hospital does not have pediatric rheumatologist; and so the medical staff rarely work with kids with juvenile arthritis.  So, to have a kid like Parker and all his complexity…well, let’s just say, that all have learned a ton this past week and they have been absolutely open to learning.  I actually really appreciate their interest and questions, verses just pretending that they “know”.  It is very refreshing and Parker feels really smart as he educates them.

So if you are reading all this…YOU are one of those really special people who care a whole lot.  We so appreciate all the out-pour of love, support and prayers we have received this week.  It truly has powered our entire family and we really needed it.  Many of you have asked how you can help…there are two ways you can help both us and children with JA.  One, our whole family is very involved with the National JA Conference this year because it is being hosted in Florida.  If you know a potential donor, in-kind sponsor, or you would like to volunteer with either prep or at the conference event, please contact us or Susan Cuellar (Florida AF office:  813-968-7000 or 1-800-850-9455 x11) and tell her you know us and how you would like to help. And two, as you may know, the walk will be this May and we would love for you to sign-up (it is free) and walk alongside our family on “Parker’s Purple Playas and Logan’s Dream Team”.  (Click here to sign up on our team.)  And of course, we also welcome donations to our walk team, too because we definitely need more research towards a cure, to send kids to camp, and to scholarship families to go to conference.

Like I said, never did I imagine that my life would take me on this journey…but it has and I am proud to say that I have become a nurse, a fundraiser, a conference planner, a JA educator, a counselor, a motivator, but most importantly…I am a wife and a mother who deeply loves my family and am so happy that there are people like you in our lives who love us too.

Parker's first post-op request was to see his brother, Logan.

Birds of a Feather Flock Together

Today I was asked, “How do you handle taking care of a son with chronic illness, while you have chronic autoimmune issues yourself?”  Of course I answered with the courtesy that I can usually muster up for such incredibly difficult questions…”I just try to take it one day at a time…and cherish each and every moment.”  But now as the day is coming to an end…I don’t think I am “handing it” very well.  How does one handle such heartache…besides praying and trying to cherish life.

My body literally tremors these days.   Yesterday, I was told that it is due to my two newest diagnoses.  I have both Graves Disease AND Hashimoto’s Disease.  Of course I asked the endocrinologist how in the world I could have both since they are pretty much opposite of each other…Graves with hyperthyroidism and Hashimoto’s with hypothyroidism.  She said that it happens and the two diseases have probably been battling inside my body for quite some time and Graves is currently in the lead.  No wonder I feel so horrible…now for those of you who have seen me lately, yes, I hide it well…but let me tell you …the way I feel inside is a complete battle.  My heart rate is way rapid and also irregular at times.  I am sweating like crazy.  My hands and legs have been having tremors and now my head also tremors off and on.  I am incredibly fatigued.  It is causing my glucose to be high and I also happen to be anemic.  My eyes have had some issues too with floaters, blurriness, blacking out in one eye, and muscle pain.  Walking has also become more difficult.  My muscles are quite weak.  And I am having trouble swallowing, difficulty breathing at night, and difficulty with projecting my voice and my RA is flaring…likely all due to the battle in my body. 

The doctor spent quite a lot of time with me and my husband explaining that my immune system is very compromised and that I am very likely to have more autoimmune issues down the road; especially since I already have multiple autoimmune diseases (severe allergies, asthma, endometriosis, rheumatoid arthritis, Raynaud’s).  She was concerned but felt that she could help me.  So that was very reassuring.  I am now proceeding with a radioactive thyroid uptake over a 24 hour period.  So I go in for the first scan…then back 2 hours later, then 6 hours later, and again 24 hours later.  The pulmonologist and the endocrinologist both think that my thyroid is now pressing on my esophagus and that could be causing the swallowing and breathing issues.   Once we get results, then we can move forward.

And as I read up on my newest of autoimmune diseases today, I ran across a reference to autoimmune diseases as “birds of a feather flock together”.  I read it out loud to my husband and we both just laughed.  So how do I take care of me….I have tried several times to take time off from work for “me” only to have something come up that needed my immediate attention…and I did’t get that “me” time.  Well, tomorrow is going to finally be my “me” day (after I get more labs in the morning).   And I am looking forward to it!