WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Monday, August 26, 2013

Hurry Up and WAIT!

Within the diseases that affect our Mitochondria, one thing all patients have in common is; HURRY UP AND WAIT.

Diagnosis? Hurry up and Wait

Treatment? Hurry up and Wait

Prognosis? Hurry up and Wait.

From Parkinson's to Leigh's- the variables in diagnosis, treatment, onset, speed of degeneration, are incredibly diverse. As we discover new things about our Mitochondria the variables get more extensive instead of less so.

It can take years of carefully monitoring a patients clinical and laboratory findings to at least create a "suspected" picture of prognosis. We guess, we generalize, we try to find a path that will give some sense of what to expect, but again and again we find we must Hurry up and Wait.

Over the last couple years as I follow patient blogs I find the Hurry Up and Wait part to be Universal, and one of the most stressful components. Often when two patients could not be more different in how their disease presents, Hurry Up and Wait is the one thing guaranteed to be in common.

A patient who has a mild onset either as a child or an adult can go years with milder symptoms and suddenly crash and develop a very grim prognosis. A patient who is terribly sick and with a very bad prognosis can repeatedly pull out of it to the surprise of both the family and Drs.

The NOT KNOWING is what disturbs us as humans. We want to know what to expect. Not just our health but in our everyday lives.

Each day I wait for Abby to wake up, I don't know if she will have a good day, a bad day, an okay day or the dreaded major crash. Each day I wonder how many more bad days can she handle before the cumulative effects add up and potentially put her life in jeopardy. Each day I wonder if my efforts to remove neurotoxins,triggers,reactions is enough, our climate control, our environment.. will all of those efforts add up to cumulative gains? Based on her 18 years of lab and clinical evidence we can guess she will live a long long time, but it is just a guess, anything could happen that might trigger some mysterious response, we have seen it happen too many times in other patients with diseases that disrupt the mitochondria. Each day I wonder how many good days will it take to give her stability to push forward with less risk of a major crash. So far, she is a fader, she gets a tiny bit more frail and so slowly it is often hard for me to decide whether she is worse or stable or better. She is also a bouncer, she can have so many small symptoms that indicate a major issue,and her body does as it should and recovers, we can only Hurry up and Wait - no way I can determine the outcomes today- this gives us great hope, and great Stress.

I don't know. No one knows. Maybe she will have another period of relatively good health, as she did through her elementary age years, and maybe she won't. We hurry up and Wait.

Maybe we will find she has some disease that has a treatment,or the biopsy was wrong, or science finds a way to heal her, we don't know we must Hurry Up and Wait.

Is it a food? A toxin? GMO's? A medication? Vaccines? Could any of those things be the cause of the growing population of patients with sick Mitochondria? No idea, we have to Hurry Up and Wait.

As parents and caregivers our energy revolves around Hurry up and Wait. Whether our child or loved one is frightfully sick or mild. So many times I have read families preparing again and again to lose their child and miraculously the disease abates or the bodies survival instincts kick in and life continues. So grateful and joyful, but knowing we must Hurry up and Wait to know if they will be able to pull through the next crash.

Antibiotics, supplemental formulas, CPAP,supplemental oxygen,tubes,lines, vitamins, supplements, with many patients these often don't have clear benefits, we must Hurry Up and Wait to see if they will help..or hurt. Maybe a week? A month? A year? Yep, Hurry up and Wait to see if it will help or hinder.

Even getting your child into a Specialist is all about Hurry up and Wait. On most of the support groups there are frequent discussions about how to even get your child seen by the "right" Specialist. Many are often unable to accept new patients. Many have waiting lists... it can take months and even up to a year to get into the Specialist that is most experienced in your child's particular disease patterns. Hurry up and Wait.

Then when you finally get in? The tests, the genetics, Hurry Up and Wait.

Support groups online are incredibly helpful. The other families are able to answer some questions and eliminate the Hurry Up and Wait at least on a few topics. Even then though, if I have a question today, I may have to Hurry Up and Wait till next week or next month before the right parent or patient stumbles across my question and can answer it.

Hyper vigilance is beyond exhausting and stressful. For every decision that I make daily for Abby I must be hyper aware of the impact. Maybe if I wash her hair today, it will take too much and my actions will cause a bad day. Maybe if I scrub her room today it will help her have a good day, or maybe it will stir up dust and cause just enough of an allergic reaction that starts a chain reaction and throws her into a crash- I have to make a million decisions and try hard to foresee all of the potential negatives and positives. I can guess based on her track record what may or may not be a good idea, but it comes down to Hurry Up and Wait to find out if my decisions were good or bad.

Diseases that cause Mitochondrial dysfunction are Hurry up and Wait diseases.

If there was some part of Abby that I could predict, prepare for or know what is likely to come, it would reduce the need for hyper vigilance and the stress. I would no longer feel like when I give her 2 slices of gf bread instead 1 and 1/2 I am potentially causing a tidal wave of repercussions..

Hurry Up and Wait = the common denominator.

Though we must ALL Hurry Up and Wait, we have a choice. We can Hurry Up and Wait for good days, cures, treatments,prevention or we can Hurry Up and Wait for the bad days, the loss, the grief.

We are opting to continue to Hurry Up and Wait for a cure, a treatment, healing, prevention, and answers.


Linnea Dengah said...

This couldn't be more true!! It was harder for me in the beginning when we were told the diagnosis. I expected a path similar to if we were diagnosed with cancer. I wanted my child to be admitted and to start treatment or SOMETHING to make her better. but we were just sent home and told to wait. wait for more tests, wait for more symptoms to appear, wait for a cure. i was left with a feeling of, "well now what?". it has gotten easier over the past year but i still HATE to HURRY UP AND WAIT.

Diane said...

It does get a little easier, once you hit the acceptance and just get used to hurrying up and waiting, but we still do way too much waiting, don't we? Ty and I hope sooner then later, the waiting will end for all of us, parents,patients, caregivers and the great Drs and researchers that are working so hard for all of us.!!

Laura said...

There is nothing I hate worse, than when I have to tell a parent, searching for answers, that they better call the specialist now and get an appt, because it will be scheduled six mnonths to a year out. They look at me like I am crazy. I tell them, there is much learning to do between now and then, but if you want the best, you have to wait. Where are the medcial cloning facilities, where we can take the very best Thinking Doctors and CLONE them so everybody can see them? My son's neurologist works in teaching hospitals, so we see a lot of interns. I do get tired of repeating the story of my sons health saga, but I know they have to learn. Sometimes, I can tell they are overwhelmed ( especially when all they ask if we've had our flu shot this year after my giving them a 30 minute fast talk on his history). I tell them to learn all they can from my son's Dr. That he is absolutely one of the best Thinking Doctors I have ever met. Not sure what they take away from that, but a few interns have asked me if I went to medical school ( HA! The Medical School of Rapid-Fire-Learning-of-Necessity-to-Save-My-Child).
I hate waiting. The last month before a big appt, after waiting a year, just drives me crazy. The days crawl by. Then, you go, fill in the doc, take some bloodwork, go home and wait for next year.

Diane said...

Maybe they should pause on Mito Research, and start figuring out cloning first! :-) You said that well Laura " Then you go, fill in the Doc, take some bloodwork, go home and wait for the next year" Exactly!

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