HEALING IRON MAN

{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. 

PIECING IT TOGETHER

one week post surgery and the boy went to school today.

i spoke with the surgeon's office this morning and when i told them he was recovering well and had even gone to school today. they exclaimed, "that's amazing!"

i thought to myself, "yup. you're darn right it is."

actually, they really have no idea how mind-blowingly amazing it is.

"let me tell you something you already know... the world ain't all sunshine and rainbows. it's a very mean and nasty place and i don't care how tough you are, it will beat you to your knees...and keep you there permanently if you let it. you, me, or nobody is gonna hit as hard as life but it ain't about how hard you hit. it's about how hard you can get hit and keep moving forward. it's about how much you can take and keep moving forward. that's how winning is done." 
                                                                           ~rocky balboa

just a short 6 weeks ago we were at quite possibly one of the lowest points we have ever been. sparky's situation was grim and we felt pretty hopeless.

the 6 months following our trip to kansas were beyond hard. they were horrible and heartbreaking. they were horribly heartbreaking. 

we are working through all of it ... we have deep wounds that are in need of healing. we still feel bewildered, confused and confounded by all that has transpired. we are still trying to piece together the puzzle that is parker...especially in regard to his relapse (that started in january 2015) and then the monumental spiral downward that transpired after our trip in october (2015) to the treatment center in kansas. the prevailing and confounding questions of course has been what the hek happened?! what triggered the initial relapse in january 2015 and then what triggered or contributed to the rapid and accelerated decline in october.

lyme and babesia are still an issue - that is a known and well-established fact but we figured there must be another underlying factor. that there was some missing piece to the puzzle has always been of concern to DR H. the hope was that this would be uncovered at the center in kansas.

since november (2015) we have been working with DR H to put the pieces together...there has been a lot of brainstorming, testing, and treatments. 

there were multiple issues to investigate. the boy is a mystery. 

at the tail end of february (2016), we were able to identify a clear link between his joint pain and localized inflammation. this was a huge revelation as we had been trying to treat it from a brain involvement standpoint - the theory being that his brain may be caught in a neurological loop/misfiring pain signals as opposed to there being actual inflammation in his joints. once we identified this link it helped to narrow down the field as to underlying causes. 

heavy metal toxicity came to light as a strong possibility. DR H started parker on a heavy metal detox in march. he had never been treated for this. testing did reveal that he had high levels of several metals (cadmium, mercury, lead). once we began treating the localized inflammation and then added in a heavy metal detox things rapidly changed for the better.

we are not in the home stretch by any means. so far what we are doing is working and he is feeling tons better but we haven't found some miracle cure either. i've been on what he is on and it's not helped me. i know others that have too. it seems to be the right thing for his body right now but whether or not it is healing him or just managing his symptoms is unknown. DR H is concerned that it is the latter. we are still trying to assemble all the factors at play. there is still testing and further investigation that needs to be done. as well as doctors appointments to schedule. of course, this has all been delayed since he went head first over the handle bars of his bike last week. (called a "superman" in mountain biking lingo)

now he's literally being held together with 19 staples, 6 screws and a titanium plate.

so the boy is chock full of metals.

how ironic.

he is tough as nails. he's resilient. strong. brave. enduring. stoic. funny as hek. and my word is he a fighter. the first 2 days after surgery were rough. he barely moved or spoke. it was tough. but what he's lived through in the past 7 years pales in comparison. he says the pain from lyme is worse than this. can you even imagine?

i am amazed by his spirit...and that he is pulling through this so remarkably well. 

is it the calm before hell breaks loose again? gosh, i hope not. of course there is concern that this trauma to his body could push things into a tailspin again. we have been in touch with DR H's office several times since the accident and he has been started on additional antibiotics to treat any flare of lyme the accident could cause. 

is there fear that one wrong move could split wide open what has been stitched together? absolutely. but we are picking up the pieces and tying to keep focused on moving forward. one. day. at. a. time. we are grateful to be where we are. we hope that this forward progression continues. our boy has been through enough. 

ps don't give up