It has been a difficult week here at the Herrington Home. We have spent the week with my running back and forth to the ICU while my father fought for his life. When crisis hits at home, it is important to keep things in perspective. Hard to do, mind you, but important.
In our family, health crises are not unusual. My father is prone to them due to his history. This time, though, it was different. I have been diagnosed with a rare disorder called Mastocytosis. It is a hereditary disorder and it is suspected both my daughter’s have it. To easily explain Masto is to say this: imagine your worst allergy reaction (maybe a bad bug bite or food reaction) and now have that all throughout your body, in every cell, brought on my literally almost anything and everything.
Yes, life for myself and potentially my girls is a dangerous thing to play with. I don’t dwell on it, but I am well aware that any moment, of every day, could be my last. Sounds dramatic, doesn’t it? It’s not. It is truthful. Scents, chemicals, medications, foods, there are hundreds of items on the list, which can cause anaphylaxis at any moment.
My father had never formally been diagnosed and was in denial. I mean, who wants to be told they have to eat a low histamine diet for the rest of their lives?! It’s hard! No chocolate, no wine, no potato chips, no store bought goods. This past week, though, changed all that for him. His diagnosis has been confirmed. A blood transfusion set to save his life almost ended his life.
The doctor’s at his hospital had never experienced Mastocytosis. Perhaps, they read about it in a textbook, but seeing it up close was another thing. I spent every day at the hospital explaining to the doctors, nurses and nutritionist how Masto works, what is acceptable and what isn’t acceptable in regards to medicines, foods and treatment of the disease.
I’d like to share with you some things we do in my family to keep things in perspective when a crisis hits:
- Keep all medical papers, journals and information in one spot so it can be easily grabbed.
- This includes any medicines taken by each of us on a color coded spreadsheet (see below) for day, night and as needed meds. We keep this on us to be able to hand to EMT’s, etc. for quick reference. A copy on your phone is ok, but a printed copy is able to be put in your loved one’s chart for all to access. We keep copies in our wallets at all times.
- Be respectful, but firm, with medical staff if you know the procedure or medicine is dangerous. Let them know you are on their team to help save your loved one, but that you are also their guardian when they are unable to defend themselves. A total risk assessment is always appropriate. Weigh all risks against possible gains and go from there.
- Know who you can call upon for assistance. My husband was able to work from home and be with the girls. We have friends nearby who could distract our youngest. Make sure to have a list of their names and numbers where all can access it. Make sure your friends have contact numbers for all responsible adult parties in your family. It is a two-way street.
- Do your best to always have a meal, or two, ready to go in the freezer. Sounds silly, I know, but in our case Masto requires a special diet and there is no Chinese take out or frozen pizza as an option. If you do have that option, make sure to have enough in your emergency fund to be able to purchase it. I used to keep $40 cash in my jewelry box as an emergency fund in case the older kids were home with the youngers and needed to purchase take-out food.
- Keep calm. Remember: This, too, shall pass. Your loved one is relying on you to communicate on their behalf. Do NOT lose your head or your temper. If you are having difficulty with the staff, simply remain calm and ask for their supervisor. If need be, go up the chain of command to you get to the director of the establishment. Take names along the way, the good and the bad. When all is said and done, write up letters stating facts of the less than stellar AND compliments on the amazing.
When a crisis hits, it is important to know you are prepared. Whether your crisis is with your child or another loved one, being prepared will keep you in a better place to best help them. Below is a copy of our medical spreadsheet for you to save and use.
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