I am about to explode…..my brain hurts from all the thinking and pondering I have been doing. I have so much going through my head and I cannot for the life of me shut it off. Here are a few of my thoughts……
Our Rheumatologist was able to get our insurance to approve IVIG for Hannah. MIRACLE……or so I thought until I heard it was going to be a very low dose not high dose. Low dose is wonderful if you are just treating immune deficiency but in a child with PANDAS, low dose can actually make the child worse….UGH! It has something to do with reactivating the immune system and not treating the brain inflammation; hence a flare in the symptoms. High dose IVIG not only treats the immune deficiency but also treats the inflammation in the brain reducing the PANDAS symptoms and building the immune system. High dose IVIG is considered 1.5-2g/kg (which Hannah received back in 2015). Low dose, is anything from 0.4g/kg-1g/kg and Hannah would be receiving the 0.4g/kg. So……here is my dilemma……the only way to build her immune system is with IVIG. But in doing so, with low dose we risk her flaring (which I can’t have happen because I am the one who deals with it and the person she attacks and she has been known to self-harm so that is something we truly want to avoid). But, without IVIG we are stuck in this “germ-free bubble” forever; but also with IVIG, if she flares, we could still be stuck in this “germ-free bubble” we have had to create. It is truly a catch 22. Now, there is a chance (a small one) that she won’t flare and she will do fine. The question I have to ask myself is…..is it worth it? Dennis and I are both concerned as we don’t ever want to make her worse; yet if there is a chance we could make her better, do we take it, even considering the risks? I am so very confused…..praying for wisdom to make the right decision for Hannah and right now I don’t know what that is. Her first infusion is scheduled for March 29th, so I am praying I know what to do prior to that. I have talked to several of my PANDAS moms and I have heard mixed reactions……the one thing I have to always remember is that all our kids are different and respond differently to each treatment. I am in such a difficult place and just so badly want to make the wisest decision for Hannah.
Something else really heavy on my heart (and I am preaching to the choir here) but it hit me this week……be so very careful about the things in your life that you complain about to others. Those things you take for granted and complain about could be the very things that someone else is longing for. I had this happen to me this week and it angered me and then made me very sad. Of course, then I looked at my own life and realized I was probably guilty of the same thing. We all have things in our life that we take for granted (I have tried the past few years to be more cognitive not to take the good things in my life for granted), but sometimes I still do. But, when that happened to me this week it hit me just how nonchalant we can be when venting our problems or complaining to others about things in our life that we want to change; yet those things could be exactly what others have been praying for and longing for. I have really struggled this week with that realization. Knowing I am guilty of it myself and then being on the receiving end of it was truly devastating to me.
Speaking of taking things for granted……OH how I struggle with this. There are several things in my life I took for granted prior to Hannah. I won’t list them here but now…..oh the ache in my heart that I can’t have those things I once did. I encourage you to look at your life and the really good things and be thankful for them, because one day, without warning they could be gone and it will leave a hole in your heart…..trust me on that.
Now, this is for my caregiving friends……..those who sacrifice everything to care for a parent, child, spouse……TAKE CARE OF YOU! Please hear me when I say……if you don’t take care of yourself you will be no good to the loved one you are caring for. There is a thing called Caregiver/Compassion Fatigue. The following excerpt is from the Caregiver Space website:
“Compassion fatigue is caused by empathy,” he explains. “It is the natural consequence of stress resulting from caring for and helping traumatized or suffering people.” According to Portnoy, burnout and compassion fatigue may overlap.
The American Institute of Stress, in the definition section of its website, describes this acute stress as “vicarious traumatization” because it’s caused by working with those who are suffering from the consequences of a traumatic event. The symptoms of compassion fatigue can be worrisome and include:
- less ability to function
- more stress than usual
- caregiver feels traumatized
- working harder, getting less done
- feeling bored
- more sickness, aches, and pains
I cannot emphasis enough how important it is that you take care of yourself BEFORE this happens. I have almost waited too long. In full disclosure and honesty I have started seeing a Psychiatrist to help me through what she has diagnosed as a form of PTSD. Yes, not the kind that military members have but something similar. There is help and I have hesitated speaking out about this but again, I choose to live authentically and transparent so that perhaps I can help someone else in their journey or struggles. I fought this for a very long time (seeing someone) because let’s face it…..it appears to be a sign of weakness but actually it is just the opposite……it takes a strong person to admit they have a problem and to take the correct steps to fix it. I heard a lot growing up that you only rely on God to fix your problems and all you need is God, not a counselor or a therapist…..just God. In my personal opinion I feel that God has equipped men and women (Psychiatrist, Psychologist, Counselors, etc) to help people through their difficulties. Shocker, there are also medications that can be prescribed to help as well. If you are struggling, take the first step to help yourself so you can continue to help care for your loved one. You will be better for it. Oh and treat yourself to manicures, pedicures, dinner out……do something for YOU! Take the time for YOU! I might also throw in here to get some exercise and eat healthy (trust me, you will feel so much better). I am in the process of taking all of these steps and I encourage you to do the same before you get to the place I was in…..trust me, living in my heart and head was not pretty and I am fixing that!
I probably should have saved this for a different post but it was on my heart and mind now and I rarely find the time to blog anymore so there you have it. No matter what you are going through always remember you are not alone, God loves you so much and wants what is best for you. Please take care of you.
Until next time………