Choices That No Child Should Ever Have to Make

I will sleep good tonight…what a week.  I could barely drag myself through work this afternoon…and before I retire for the evening I just want to update everyone on our Purple Playa.  He is the strongest individual I know.  He has endured so much in his 14 years and I marvel every day at his ability to push, encourage others, and show so much love.

He is once again faced with such challenges and difficult choices.  Today, we officially withdrew him from school.  After having a conversation with his doctor, we felt that this was the best decision for where he is at and he is going to concentrate on his health.  This was as much his decision as it was ours and the doctor’s.  But even though this was the choice he made…it doesn’t make it easy.  He is, of course, keenly aware that he will not graduate with his classmates and will be re-entering the ninth grade next year.  He tried with all his might to go back to school this year, but his systemic disease has just been too hard on him and once again he is absent more than he is present.

This week he started acupuncture.  It was quite painful when the doctor put needles in his ankles and we thought he was going to give it up.  But then Parker suggested to maybe try a different location since his ankles are his worst joints.  The doctor, who is both an acupuncturist and pediatrician, was so thrilled that he was willing to try again.  She then went into his back and also added electric current and heat and he really liked it.  We even noticed that he seemed to have a little more energy that night and next day.  He will continue to get weekly acupuncture and we will see how it goes, be we are hopeful that it will help his pain.

Sometimes, I wonder if the Rilonacept is working well enough anymore, but it has been the best biologic he has tried.  As we are adjusting and reducing some of his meds, it has been quite hard on him.  He has so much pain and is incredibly fatigued.  He is also having his rashes and fevers again, a classic systemic JA symptom.  I just hate how this disease seems to outsmart the drugs.  We have also increased his PT from once a week to twice a week.  And we hope to continue with some auqua therapy, if we can get in a heated pool with the winter months coming up.  We are still researching heating our pool or getting a hot tub.  And he is periodically going to counseling.  The counselor has a gift for helping him process all that he is going through.

We are considering bringing him to NIH (National Institute for Health) in D.C.  We discussed this a bit with his doctor and it feels like this is possibly the next best option.  However, with the government shut down, there is little we can do right now.
 

We are doing the best we can to support our “purple playa” and I know he so appreciates everyone’s encouragement.   Tomorrow is “World Arthritis Day”!  Please share with someone that children endure this disease and for Parker, it is not just in his joints, but it also tries to attack his internal organs.  We continue to pound at JA and we continue to hope that one day, he will be without pain.

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!