Warning: some damaged skin images included, please proceed with caution.
I think I’m ready to share more details about the experience I’ve had since I embarked on healing my Dad’s “psoriasis”.
At this point I believe going into more detail may help you have faith, trust the process and know that love conquers it all.
Caregiving is not easy, but it can be a rewarding journey with the right mindset.
If you read my post on the “Importance of a healthy gut” then you know about my trip to Venezuela to get my Dad out of the country back in October 2017 and into the US for better healthcare.
What I didn’t share then, and I’m ready to share now, is some of the more raw and personal details on what that journey looked like from the beginning.
My Dad and I have always had a very strong connection, there is an unspoken mutual love and he knows I’ll do ANYTHING for him.
When I got to Venezuela and I saw him at the airport, looking frail, had lost at least 20 lbs I was holding back tears so bad.
I don’t like crying in public areas, and absolutely don’t like crying in front of my parents (apparently I shed enough tears growing up, or at least I say that to myself).
Somehow, I developed this self-image of being the strong one in the family.
I’m the one who drops everything and jumps on a plane to go to one of the most dangerous countries in the world right now for my Dad.
I will do this for any of my direct family members and loved ones.
My Dad wasn’t thrilled when I told him I had gone there with a ticket for him to come back with me to the US.
My aunts and uncles, on the other hand, were so happy.
They had seen his rapid deterioration and knew it was the only way to save his life.
One thing my Dad knows and respects about me is my determination, he was getting on that plane NO MATTER WHAT! Or I wasn’t leaving, which meant risking my job and my livelihood.
When I arrived in Venezuela, I was able to gauge his health state. Thankfully he was strong enough to withstand the trip to the US.
Then I started locating his medication in Miami.
His dermatologist in Venezuela had recommended he started taking Neotigazon, a medicine that he couldn’t find in Venezuela or Colombia.
I called my brother and asked for his help.
He had lived in Miami a few years back and had mentioned there were some Cuban/Latin pharmacies where you could buy medicines with international prescriptions. He couldn’t locate the medication.
At the same time I was calling my best friend from when I was growing up who also lives in Miami to see if she could help.
She explained that we needed to find the active ingredient of the medicine so we could know the brand name in the US.
Finally, after some digging around the internet and calling a few places she found the medicine, price tag $700.
I told her to please order it and I will be picking it up on Monday.
We were flying back Sunday afternoon. Saturday night my Dad started complaining about some skin sores.
Up to this point he had survived by taking steroids. He was taking 60 mg of prednisone.
I had no idea of the side effects and long-term damage steroids cause on the body (you can find out more details here).
My Dad had been taking rounds of steroids for almost a year by that point.
Every time the doctor tried lowering the dosage, he would get worse.
Finally, on Sunday we made it to the airport, our flight was delayed, but my Dad was holding up pretty good.
We arrived in Miami after 9pm, picked up the rental car, drove to the hotel, drop off our bags, then headed out to eat dinner.
I already knew about certain food allergies he had developed, we just didn’t know all of them at that point.
My best friend growing up was an angel sent from heaven, she made an appointment for my Dad to see a dermatologist who had cured her daughter’s eczema.
She also gave me all the information I needed to get my Dad’s prescription medicine.
By noon, I had the medicine, a few ointments for my Dad’s skin and we were on our way to see the doctor my friend recommended.
Up to that point I was going on overdrive, adrenaline rushing through my body the whole time.
I tried to keep my basic needs met, had good food and try to get as much rest as possible.
When we walked into the doctor’s office I felt my body starting to give in to the stress.
“Oh no, I have hold it together for just a few more hours” I kept telling myself.
The nurse walked in and instructed my Dad to remove most of his clothing.
She then started asking about any medication he was taking.
At that point the list was LONG. Blood pressure medication, steroids, drops for his eyes, drops for his ears, immunosuppressant medicines, plus the new psoriasis medicine he had started that same day.
The nurse got overwhelmed by the list and teary eyed, she saw my Dad’s skin condition and how uncomfortable he looked.
I had to step outside, pretend to go to the bathroom and give myself a pep talk about staying strong.
“Mind over body, he is here, he is going to be OK, we got this!”
By the time the doctor walked in, her jaw immediately dropped.
She said: I can’t really do anything, you need to be hospitalized right now.
My first thought was: Wait what? Hospitalized in Florida, hmmm, nope that’s not going to work.
I said to her: I got to get back to NJ, I can’t leave him here alone.
She called a fellow doctor and one of her teachers, asked if he could recommend a doctor to see my Dad immediately in NJ, we got Dr. Machler’s name right there and then.
I’m shaking at this point, what if I’m making a mistake by forcing him to come with me, what if this is the wrong decision, but I went with my gut.
Stepped outside to call the doctor in NJ, I kept repeating in my head: “stay as calm as possible, you got this, stay strong.”
I literally got on the phone 10 minutes before they closed the doctor’s office in NJ.
The lady on the other side of the line said: we just had a cancellation for tomorrow, if he can be here by 10 am we will take him in, if not he may have to wait a few weeks.
I walked back into the examination room, and the doctor tells me she agrees with the treatment my Dad had but needed to look at those sores on his skin, she wasn’t sure exactly what they were, but definitely needed to take a biopsy as soon as the doctor in NJ saw him.
Ok, we continued our quest to get my Dad under the right medical supervision.
We flew back to NJ that night.
My Dad’s energy was quickly dropping, these had been some very hectic days, especially with his condition.
He couldn’t stand temperatures lower than 80-90 °F and even then, he was wearing long sleeves and layers of clothing.
So you can imagine how cold and uncomfortable he was inside the airplane.
It was as if he had loss the outermost layer of the skin (the epidermis), actually he probably did, because he had no body hair left.
We walked into Dr. Machler’s office on Halloween Day.
From the beginning I knew my Dad was going to be under great care. (You can read more about why I thought this on my previous post love your doctor).
Turns out his skin sores were the result of a severe staph infection. The doctor asked to bring my Dad back in two weeks, got some blood work done, took samples of his sores, and started a plan to get him off the steroids.
By Wednesday night, my body was PISSED OFF!!!
I had put it through so much emotional stress that it didn’t want to cooperate anymore.
Thankfully my brother was flying in on Friday to help me care for my Dad over the weekend.
I got so sick but I tried to pretend I was fine. Again, I’m the strong one, right? Ugh
I was hugging the toilet for one minute and the next I was all smiles, keeping my energy up, putting ointment all over my Dad’s body. I wanted to keep him comfortable and avoid worrying him about me also getting sick while I was caring for him.
The trip was rough on my Dad too.
He spent the next 2 days “sleeping” all day or laying down all day I should say.
His skin sores hurt so bad he couldn’t really find a comfortable position to be able to sleep well.
Good thing we had baseball and I’m so grateful for Altuve and the Houston Astros for keeping my Dad entertained during those first rough days.
The battle had just started, but I had to trust everything would work out as it should.
Silver lining during the first week of my Dad’s healing:
- Friendships are amazing, even when you live thousands of miles away.
- Live without regrets – if I hadn’t done everything I did when I did back in October, my Dad would be 6 ft under.
- Awareness and understanding of my body helped me identify the actions I need to take to help it recover quickly.
- It’s OK to ask for help and not be superwoman! That week I hired a cleaning lady and was so grateful to not be an only child.
The journey continues…stay tuned
If you want to learn about the first 5 foods I switched on my Dad’s diet to get him stable download the guide here.