Back to Boston

Recently, a relative became very sick with health complications. She is a long-time chronic illness warrior, and health challenges are nothing new to her, but of recent, these new medical issues were too much for her to handle on her own. We graciously welcomed her into our home. And from there, I have begun taking on a role in her caregiving. My days and nights have been filled with coordinating appointments, prescriptions, and home medical equipment in addition to helping my relative through her daily activities of living.

On Friday night, I noticed her feeding tube seemed to be sluggish. I brushed it off. On Saturday, the feeding tube seemed to show more resistance. I hoped and prayed we could make it until Monday to see her doctor. On Saturday evening, she developed a significant fever, and off to the emergency department we went.

After running some tests, they determined she needed immediate surgery. Due to my relative’s medical complexities and the intricate surgery she was going to require, a decision was made to fly my relative to Boston to see her medical doctors. So off to Boston we went.

Upon arriving at the second hospital, it was a whirlwind of events—more testing, more vials of blood, more chaos. My relative was rolled into the operating theater on Sunday morning. Thankfully, the surgery went well. After surgery, she was taken up to a hospital room, and now I began my role as her advocate. I ensured she received her medications at the proper time and interacted with her medical team. In the evening, I collapsed into a chair and slept fitfully through the night.

On Monday, a new medical team rounded. I listened closely to the information they provided and also asked my relative if she knew what the doctors were talking about. All morning, there was a parade of people through her room. After lunch, a hush settled over the medical ward. After the chaos of the last few days, I excused myself and attempted to escape the confines of the hospital for a short while.

As I made my way down to the lobby, I stumbled upon a woman who was sobbing uncontrollably. I sat with the woman, prayed with her, and provided a listening ear as she unburdened her heart. When the woman collected herself, she realized I had a tracheostomy tube and ventilator. She asked if I would visit her daughter because her daughter was now on life support.

I traveled through the lobby to another section of the hospital. Soon, I was entering the daughter's hospital room. The girl was clearly showing signs of being very distressed. I moved to the side of the girl’s bed. I stroked her head and then noticed the cuff on her tracheostomy tube was deflated. I asked the mother if it was supposed to be deflated. She said she did not know. A nurse was summoned. I inquired why the cuff on the tracheostomy tube was deflated. The nurse said she did not know. After several phone calls, it was discovered the cuff was not supposed to be deflated.

I retrieved a new syringe from a side cabinet. I showed the mother and nurse how to inflate the cuff on the tracheostomy tube. After a few breath cycles of the ventilator, the daughter seemed to relax. After five minutes, the daughter’s vitals were normal, her machines were no longer beeping, and the girl had a sense of peace and calm on her face. The mother could not believe the transformation she saw in her daughter. New tears sprang to her eyes. She profusely thanked me. I patted her hand and told her I did very little. I told her to thank God our paths had crossed and pray to God for continued healing and restoration of her daughter’s health.

After staying a short while with the girl and her mom, I then hurried back to my relative’s ward. I thought she might be stressed that I was not by her side. As I raced to my relative’s room, I heard laughter. When I entered my relative’s room, a family member was sitting next to my relative. I was so relieved to see the family member and hear my relative’s laughter. I slumped into a chair and allowed the family member’s cheerful mood to infuse itself into my soul. It seemed all too quickly the family member had to leave. We said farewell, and I began another night in the hospital.

Extreme fatigue gripped my body and mind. I closed my eyes, and soon I was fast asleep.

Today’s news continued to be positive. My relative should be able to be released from the hospital on Thursday. The medical team has asked that she stay in the area until Friday so she can have an outpatient follow-up appointment before heading back home. After all the stress and panic of the last few days, it seems smooth sailing is ahead. The thought of soon being back home and sleeping in my own bed gives my mind and body the needed energy boost to keep on keeping on.

Panic! Double Booked Appointment

Although I may have many medical conditions and medical needs, I do not like going to the doctor. The thought of spending time in a waiting room and in an examination room makes me want to cry. I do not necessarily hate the medical clinics. Rather, I do not like wasting my time waiting for the doctor. I thoroughly enjoy telemedicine appointments. However, as we are celebrating six years since the world shut down, most medical offices have stopped doing telemedicine appointment due to the cost associated with the telemedicine platforms.

With that all said, when I have to have a medical appointment, I try to schedule two appointments together. This way, I only waste one day of my life. 

A few weeks ago, I called to schedule an appointment with one of my doctors. The only morning appointment available was at 9:45 a.m. I really wanted a 10 a.m. appointment, but I assured myself getting up 15 minutes earlier to go to an appointment was no big deal. I took the 9:45 a.m. appointment. When I called the next doctor's office, the only available appointment in the afternoon was at 1:15 p.m. I thought, "Oh perfect. I can see both doctors on the same day." I scheduled the appointment.

Yesterday, I received both an email and phone for the 1:15 p.m. appointment. I confirmed the appointment. Late this afternoon, I received a phone for the 9:45 a.m. appointment. The receptionist said, "Hello. You have an appointment at 1 p.m. to see Dr. Smith."

I corrected the woman. "I believe you are mistaken. I have a 9:45 a.m. appointment."

The receptionist retorted, "No. Someone else is scheduled at 9:45. You have a one o'clock appointment."

I told the receptionist that was not going to work. I have another appointment at 1:15. I begged if there were any other appointments available. She decided she could squeeze me in at 10 a.m. I happily agreed to the new appointment time.

I profusely thanked the woman for the appointment time, and I hung up the phone. I slightly chuckled. I originally wanted a 10 a.m. appointment, but the only thing available was 9:45. But, alas, it seems God worked it all out. I have a 10 a.m. appointment. Hooray!

Helping Someone with a Life-Threatening Medical Condition

Today was a rough day. The onslaught of YouTube comments was getting to me. I know I post things to YouTube and should be grateful for comments, but some days, I wish people would just tell me they enjoyed the video and not badger me about topics.

As I was pondering how my life would be better if people did not give me their unsolicited advice, I read a comment which stopped me in my tracks. The commenter has a medical condition called antiphospholipid syndrome (APS). APS causes blood clots. The person is on a medication which is akin to aspirin. They have had MANY complications even while taking the aspirin-like medication.

When I read the comment, my heart broke, and I panicked. My brain silently screamed, “Oh no, NO! This is the WRONG medication. The person needs to be on warfarin.”

I frantically searched online and found information about the medication the person is taking, why the medication will not help someone who has had complications from APS, and also information on why warfarin is the drug of choice for APS.

I gave the person the link to the information as well as I copied and pasted the relevant information into the YouTube comment. I hope and pray the person sees my response. I hope and pray the person takes the information to heart. I hope and pray the person is able to see his/her doctor and is able to be switched to warfarin.

APS is a very serious medical condition which can lead to many complications such as strokes, seizures, heart attacks, and death. I truly hope this person is able to be treated for APS. With proper treatment, the risk for developing complications dramatically decreases (and some even say the risk drops to almost zero). 

The commenter told me he/she feels like they are going to die from APS. Please pray for this person. He/she is in desperate need of our prayers.

Terrible migraines

For the last year, I have been having severe headaches and migraines. They become very intense. My neck muscles tighten up, and it hurts to keep my eyes open. The only thing I can do is to go to bed, put a cloth over my eyes, and lay completely still praying for sleep to come. I have suspected it is due my eyes being fatigued. However, I have not been able to figure out a cause.

Yesterday, my eye pain and headaches were out of the world awful. When the pain becomes severe, I have to lay down and close my eyes. I then cannot sleep because the headache is so intense.

I finally figured out the eye pain and headaches. It is from looking at my computer screen. Today, I looked at my computer screen very infrequently, and kept looking away or at the wall every few minutes to prevents my eyes from focusing on the screen. Finally, tonight, my eye pain is nearly gone. My headache is not very severe.

Now, I do not know what to do. My life revolves around being on my computer, responding to social media, and doing YouTube videos. I will have to think long and hard how to balance my eye strain, eye pain, neck pain, and headaches. Perhaps I will have to scale back on YouTube. I am not sure how much more of this pain I can take.

Waiting 3.5 hours (and counting). Should I be upset or concerned?

Today my respiratory therapist was supposed to visit me. She said she would be here around 2 p.m. I set everything up to have the home visit in the living room. She needs to pick up some equipment and get readings off my two ventilators. I patiently waited for her.

After waiting until almost 4 p.m., I decided to call her. If she is late, she usually emails me. Despite checking and rechecking my emails, I did not see any correspondence from her. When I rang her phone, it went straight to voicemail. I asked her to call me and let me know if she is coming.

Well, here I am. I continue to wait. She has not called back.

I do not know if I should be upset I spent all afternoon waiting for her or if I should be concerned. She usually is very good about letting me know if she is running late. Since she did not answer her phone, I wonder if something happened. Perhaps she is sick, a family member is sick, or some other ill fate may have sprung upon her.

I was happy this week, an event I usually attend on Mondays was cancelled. I was happy because that meant I actually had energy today. Since I have Bible Study on Tuesdays, I am usually dragging on Tuesday evening due to having a long day on Mondays, but today, I was going to have energy. However, after waiting in the living room, sitting in the upright caused blood to pool in my legs for several hours. 

Now, my energy is spent. What a bummer. I thought for once, I might actually have energy for Bible Study, but I guess not this week. I will once again hobble through the session, hoping my fatigued mind and body can make it through the night.

I am praying mt respiratory therapist is ok. I am praying she just forgot to visit me today.

Exhausted, but what can you do? Pushing through the pain.

Today was a long day. It was not necessarily a long day on its own, but yesterday was a busy day. And tomorrow is also a chaotic day. So here I am, absolutely exhausted, and I still have one more day to push through.

Funny things which happened today:
I was texting someone, and my phone froze. I texted, “I am exhausted”. Then the phone refused to function after that. I had to laugh. I believe I gave my phone permission to freeze and stop working because, as the screen read, “I am exhausted.” LOL!

Since I was tired, I decided to eat some chocolate. When I was opening up the chocolate bar, I significantly cut my knuckle on the packaging. Again, I had to chuckle. Really? I have been injured by a candy wrapper. I guess today would be the day for that to happen.

Now, my body screams in pain, but I have a long night ahead of me. Sewage backed up into my bathroom. The plumber has been called. He needs to look at the sewer line and clear it out. This means, I have to vacate my room because to access the bathroom, he has to go through my room. I have to move all my medical equipment. I could be angry or upset. Instead, I have decided God must want me to clean up my room. And of course, there is no time like the present to do so.

I hope everything goes well tomorrow. I hope the sewer line is cleared. I hope am able to get a good night’s sleep, sleeping on the floor in a different room. I hope everything I need to do tomorrow happens without any complications. And I hope soon, I am able to rest in bed.

Love Your Neighbor...Unless He is Different Than You

Last night at Bible Study, a person expressed his deep sadness and concern over the state of the USA. He was devastated about the giant chasm which separates many family and friends. He desperately wanted unity, love, and compassion. The man's pleas profoundly struck me. During the session, I prayed with deep conviction that healing for our land would soon come.

Today, I wandered onto Facebook. I usually do not look at it much except to check my messages. However, I looked to see if a woman responded to a comment I had made on her post.

 To my surprise, the woman did not respond, but someone else did. The responder told me I was wrong...

To understand the situation more, here is a brief synopsis of the original post. A woman had received unsolicited medical advice from a family member and wanted to know what to do. I responded she should thank the family member, look up the information to see if there was anything which could be useful, and then report back to the family (again thanking the family member for taking the time to offer her kindness (i.e., unsolicited medical advice)).

The person who responded to my comment went on a rant that disabled people should not have to validate able-bodied people...

I want to stop right there. Right there. THIS IS THE PROBLEM IN THE USA!!!! People are tossing each other into groups. It is the "them" versus "us" mentality. We do not know anything about the family member other than the family member offered unsolicited advice, but now, the narrative has turned from one of love and compassion to one of war and division. Suddenly, we are not to love anyone unless they are exactly like us. We are not to be kind to each unless they think and act like we do.

My blood boils thinking that this mentality not only pervades the mind of the person responding to my comment, but it was the general mood for all the comments. Every person stated the poster should not have to take the unsolicited advice. The woman should reject it (and in essence, the woman should reject her family member).

The world has flipped upside down. I truly believe we should love everyone ESPECIALLY if they are different from us. It is easy to love your best friend who likes the same things you do, but can you love the grumpy old man down the street, who curses at you every time you pass his house?

We are called to be a light unto the nations. Right now, all nations (including the USA) are struggling. Take time this week to reach out to someone you do not know or do not like very much. Extend love and compassion. Smile and say "Hello" to a stranger at the store. A simple smile, a friendly greeting can really change someone's day...and if you change someone's day, you have, in a small way, changed the world. You have helped heal the hurt of this very broken world.

And if you ever receive unsolicited medical advice, please thank the person. You do not have to be grateful for the advice, but please be grateful for the person's kindness. The person wants you to get better and may believe their tip or insight will help you become your best self. Should you be angry someone wants you to become your best self? I think the answer is clear: ABSOLUTELY NOT! We should rejoice and praise God that we have received this unexpected gift of love and compassion. 

Together we can heal the hurt, sadness, and depression which permeates through the world--small actions and words of thanks can do much to build a bridge across this very divided world. 

Love is patient, love is kind, it is not jealous; love does not brag, it is not arrogant. It does not act disgracefully, it does not seek its own benefit; it is not provoked, does not keep an account of a wrong suffered. (1 Corinthians 13:4-5)