May 11, 2016


{comedy is a necessity to get through life with the fewest scars. 
humor is the best antidote to help relieve struggles.}
                                                                        ~Suzy Kassem

the boy has started physio to rehab his broken collarbone from his mountain bike crash. His therapist sent him home with a list of daily exercises....naturally the Hubster had to add in his own two cents. 

where would we be without the hubster's humor, eh?

sparky's incision & collarbone are healing well and range of motion in his arm/shoulder is back to nearly 100%. we are amazed at how quickly his body is recovering from this injury. it has actually been very odd to experience such a rapid and uncomplicated recovery process.

this is not in our realm of normal. 

healing from (chronic) Lyme is so vastly different.  fighting chronic Lyme is complex, frustrating and never follows a predictable pattern. it is an arduous marathon of "one step forward, two steps back"... it takes an iron will, body and mind to battle this disease.

it is a journey that sparky has been battling his way through for nearly 7 YEARS now. we are grateful that he has been doing better since the end of february (2016). he has "good" days and "bad" days - most days are still a grinding uphill slog. his current treatment protocol has helped reduce his joint pain and as a result he is sleeping better. he has also gained back 10 of the 20lbs he lost this past fall. less pain, more sleep & weight gain mean that he is stronger & able to get out for small amounts of time and/or attend school for a few hours per week. we do not take these gains lightly - they are significant and we are relieved that he is no longer deteriorating. however, he continues to spend a good deal of time in bed due to profound fatigue, brain fog, headaches and noise sensitivity. some days these symptoms are very intense & disabling.

his medical team is still working to uncover what set off his relapse and rapid decline this past year. and find a treatment protocol that will help his remaining symptoms. his mountain biking crash temporarily side-lined further investigation as well as delayed treatment. IRONically, he had been undergoing heavy metal detox protocol at the time of his accident. so there we were trying to move metals out and there he went getting metals put in. funny. not funny.

heavy metal detox can be hard on the body so this treatment was tabled while he recovered from his surgery. now that his body is healing from that we are finally able to move forward with more aggressive treatment.

on thursday we will be travelling to Seattle, Washington. he is scheduled to have a two hour appointment with one of his Lyme docs as well as undergo additional testing and treatments in the clinic there. the following week we have an appointment with DR H (this is phone appointment. we are not going to SF at this time). 

we are hopeful that as a result of these appointments, he will have a treatment plan that will address his infections, his mitochondrial deficits, and heavy metal toxicity & other underlying co-morbid issues that are continuing to cause him such disabling symptoms. we know this is going to be a tough course and we have to target each thing one step at a time in order to heal our iron man.

ok i feel like i should some how close this post with something funny or lighthearted. especially since i started it with humor. but i'm just sitting here like, "ummm, hmmmmm... nope, nada. i got nothing more to add." 

my heart is heavy as lead. 

here's the thing. some days we can laugh and find the humor in all of this. other days we cannot. some days we find ourselves laughing and crying. today is that sort of day. this is hard. we are so worried about our boy - his present and his future. we so desperately hope and pray for healing for our iron man. 

but, ok. here we go. as we road trip tomorrow, we'll be listening to the comedian jim gaffigan. he's worth a laugh or two or three. check out his McDonalds rant here or search him out on youtube. 

1 comment:

Setapart1979 said...

Praying for all that's coming up with appointments, new protocols & all the ups & downs of the waiting, watching & hoping. Thankful to hear that his injury is healing well & hoping for a real breakthrough through these next steps of treatment as well as daily grace, strength & peace.

O my Strength, I watch for you; you, O God, are my fortress, my loving God. Psalms 59:9-10

Blessings, Amber