Here Come the Negative Comments

This week, I released a video on YouTube documenting a recent hospitalization I had. In the video, I tried to be very mindful of what I said and what topics I included in the video. (I did this because I had a previous hospitalization video last year which received A LOT of criticism for me doing/saying certain things in the video.) I wanted to prevent as much negativity as possible from people who may disagree with something I say or do in the video.

With that said, I knew once I released the video, I would receive critical or even vile comments. And that has been true. Surprisingly, the comments were quite positive in the beginning. But, a day and a half after the video was published, the rude and condescending comments began trickling in. Ah, at last, the comments are here.

Angry meerkat. This meerkat does not represent anyone in this blog post. The image was used to express an emotion. If you believe this meerkat resembles anyone you know, it is "merely" a coincidence.

I will pull out two comments which struck my fancy. First, someone told me I need to think about helping others. I will not elaborate why the person said this. The comment had a negative tone to it. I was thunderstruck someone would suggest I need to THINK about helping others. In case people are not aware, I believe both my YouTube channels are ways I help others. In many videos, I provide educational training about various medical equipment, health conditions and medical devices. Moreover, the amount of time I spend corresponding with people from YouTube is truly mind-boggling. I often neglect my own personal care and well-being to sacrifice having time to communicate with others about topics ranging from trach tubes to ventilators to insurance issues to Mitochondrial Disease to hospice to...well, the list is endless.

There are also things I do offline. Although I may seem like a public person by sharing my life with the world on YouTube, there are many things I do not discuss. And many things I do in my life which are very personal and private. In short, I help people every day as much as I can. I do not need to think about helping others. Helping others is who I am and what I do.

The next YouTube comment which struck me as bizarre was one from a person who claimed to be a respiratory therapist. The person said I was faking everything. The person said my breathing and speaking did not match someone who was using a speaking valve. The person went on and on about this topic.

I found it odd the person would make such a comment because being a respiratory therapist, he/she should know people who have a trach and vent do not always use a speaking valve. Furthermore, the issue the person had was actually not a discrepancy. The person did not understand how speaking valves worked. The basis for the person's comment was entirely inaccurate.

Both these comments emphasized to me, people like to judge others before they know even a superficial amount of information about the other individual. Furthermore, the respiratory therapist's comment made me realize he did not have a good understanding of his/her medical field. Instead of saying I am faking my breathing/need for a ventilator, the proper thing to do would be to ask why I speak and breathe the way I do. But, I suppose, it is much easier to hurl negative comments at someone than to find out a little bit more information about the person.

Of late, I have not used a lot Scripture in my blog posts. So, I will leave you with one of my favorite verses which seems apropos for this situation: "Even fools who keep silent are considered wise; when they close their lips, they are deemed intelligent" (Proverbs 17:28).

Taking a break after 8.5 years

Eight and a half years ago, I began attending a Bible study. I love the group and always look forward to attending the sessions. The number of participants waxes and wanes. In days gone by, our low numbers used to be in the winter, and the group’s attendance soared in the summertime when other Bible studies went on a summer break.

However, of late, the reverse has been happening. The group’s numbers are larger in the winter and tiny in the summer. During the summer of last year, there were some weeks where I was the only participant.

With that being said, the decision was made to take off this year for the summer. It broke my heart to not meet, but I understood it was for the best. There was no need for me to come every week if a majority of the participants were going to be busy during the summer months.

Tonight was the first night I have not gone to Bible study in 8.5 years. (I have missed in the past due to illness and going out of town, but tonight was the first night I did not have any scheduling conflict and did not attend Bible study.) Oddly, I nearly forgot tonight was the night we usually have Bible study. Perhaps I have too many things going on in my life, and Bible study is no longer the one thing I look forward to every week. Or perhaps, after 8.5 years, I am ready for a break.

Giving it My All, and Yet Still Rejected

 

Last week, I started a new endeavor. It was extremely stressful, but I made it through the event. I struggled all week to gain my energy back. This week, I again had a chaotic week. I exerted far too much energy on Monday. I was not able to rest all day yesterday (Tuesday) because I had Bible Study in the evening.

At Bible Study, two new people showed up. Despite having a headache and being in pain due to a back injury, I did my best to power through the night. The new people were very bold and told me I did not meet their expectations. I was rather mystified by this. Perhaps I did not gush over them, and did not ask about their families, their careers, where exactly in the community they lived, etc., but we were attending a Bible Study. I asked them some basic questions such as their names, where they were from and made some small talk with them for a few minutes. The group chatted briefly at the beginning when we discussed prayer requests. The new people did not wish to divulge anything at that time. Then, we discussed the Bible.

The night really wore me out. I did my best to include the new people in the conversation. By the end of the night, they seemed to be involved in the discussion, but then they both abruptly left because one of the new people had to get home for a Zoom meeting.

I put my heart and soul into things, and it often feels as though the world does not appreciate my efforts. Perhaps it is my tracheostomy tube and ventilator, my failing health or my desire that people feel welcomed, but at the end of the night, I felt like a complete failure...and the new people confirmed that with their words to me.

Today, I am extremely exhausted. It is hard to leave my bed. My head and back are raging in pain. I wonder why I endure so much. It would be so much simpler if I just stayed in bed all day and did not contribute anything to the world. My health would be better, and I would be in less pain.

I Wonder How This is Going to End

 Do you ever wonder how a situation is going to end? That has been on my mind lately. A medical complication, which is very easy to treat, has tossed around from doctor to doctor. No one wants to give me the proper treatment for it. I get a little bit of medicine, start to feel great, and then the medicine ends. My symptoms come roaring back.

Despite the simple conclusion, the medicine was working and now the symptoms have come back because the medicine is no longer being administered, I am given excuses why I cannot continue to receive treatment. A normal treatment protocol is 3-4 months. However, after I am given two weeks of the medicine, I am told I have received enough.

When I become very sick again, medical personnel seem perplexed. Two weeks of the medicine should have been more than enough. When finally more medicine is given, it takes me two weeks to get back to where I was when the first two weeks of treatment ended. And once again, the treatment ends.

The is a real possibility starting and stopping the medicine will cause my body to become resistant to the drug. Medical providers seem to be oblivious to this. 

In desperation, I saw my primary care provider today. I was shocked to learn I had lost seven pounds in five weeks. She was very concerned. Although she could order the medicine for me, she feels very ill-equipped to treat me. Instead, she referred me to the emergency department.

Normally, I would not go to the emergency department (ED). My health issue, at the moment, is not a life-threatening event. The ED will most likely tell me to follow-up with my doctor. And another spin around the merry-go-round I go.

I wonder how this is going to end. If my medical issue is not treated properly and completely, there is a possibility it will kill me. My body does not produce blood results which cause any concern from medical providers. My body is tired. It does as little as possible. Numbers will not elevate...and according to EDs and doctors who do not know me very well, if my blood work "looks" normal, then it is normal. Please disregard the person laying on the gurney clinging for life. Despite her skin looking a deathly green, she is "fine" because her blood work is normal. 

Oh My Head, My Head!

For a while now, I have been fighting an infection in my brain. I had have infections in many parts of my body but never in my brain. The infection in my brain causes headaches, dizziness, bouts of confusion, neck pain, neck stiffness, fatigue and hearing loss. I was on medicine, but then it was stopped. Although I was still quite sick, I was assured I was all better. After I stopped taking the medicine, the symptoms came back with a vengeance. Thankfully, I have been restarted on the medicine for the moment.

As I have been reading up on the infection, I found out when the micro-organism dies off, it produces the same symptoms as the infection. The toxins released by the micro-organism overwhelm the liver. Because the liver is not able to process all the toxins, the toxins then wreak havoc on the body. Thus, it is hard to know if the infection is getting better or worse.

I am a strong believer that all medicines have their counterpart in nature. I have been researching my infection and natural alternatives to the medicine I am taking. I stumbled across information about how to help the body better metabolize the toxins--magnesium, vitamin C, milk thistle, molybdenum, etc. Thankfully, I have everything except the molybdenum. This morning, I ordered molybdenum.

Moreover, I researched some of the supplements suggested to kill the micro-organism. I began one of them yesterday. After taking the supplement, my symptoms worsened. My head felt as though it was going to explode! This is to be excepted. As the micro-organism dies, it releases its poison. So, it seems, the supplement is working to kill off the micro-organism. I have two more supplements coming today which are suppose to help kill off the micro-organism. Perhaps I will be brave enough to try them, but I know, if they work, my health will become even worse.

There is always a fine line I walk between health and death. Once again, I am walking that line. If the infection is not killed off, it will most likely kill me. I wish things did not have to be so challenging, but at least there is a possibility I may soon be rid of the infection.

The Great Debate: Serving Myself versus Serving Others

For the last several years, I have been in a fierce battle. I have been trying to find a happy medium between serving myself and serving others. The needs of others are immense. People are constantly screaming for me to help them. I do what I can. I answer messages, comments, emails, etc. sometimes into the wee hours of the morning. Sometimes people say, "Thanks." And then there are those who never acknowledge I spent several hours answering all their inquiries.

This spring, I began a new endeavor--leading a 13 week grief support group. The group in and of itself was nothing too strenuous. It was no problem for me to encourage people to share their grief. The biggest issue for me is to travel 30 minutes to the location, set-up the room, do the support group, tear down the room and then travel 30 minutes back home. When I arrived home, I went straight to bed for a few days. My body does not have 3.5 hours of energy to devote to such a task.

This summer (with the grief support group finished), I was planning on taking a break. I want time to work on my book. Of late, I have been scrambling just to get my YouTube videos out. The thought of having some time to just rest seems like a dream.

However, a new dilemma has arisen. There is a possibility I can do a new session of the 13 week grief support group at a local community center which is just down the street from me. I would not have to travel to and from the venue, and I would not have to set-up the space. I crave so desperately to have some time off, but I wonder if that would be a mistake. So many people are hurting and desperately need a grief support group.

I know the days I have on earth are very limited. I need to make the most out of them. If I am not doing something productive, I have a tremendous sense of guilt that I am not doing what God wants me to do. My biggest fear is that after I die I will be scolded by God for wasting time. I dread hearing the words, "You wicked and slothful servant. I gave you so much, but instead you wasted your life by laying in bed." The great debate of serving myself versus serving others rages on.

Running a frustrating race. Trying to stay calm.

Since I was dismissed from the hospital, I have been trying to get an infectious disease doctor to take up my medical case. But, things have been fraught with roadblocks. The one medical center I really wanted to go to, despite me sending them all my medical records, did not review my case. Without a doctor reviewing the case (and agreeing to take me as a patient), I could not schedule an appointment.

I then saw my primary care provider. I hoped getting a referral to the infectious disease doctor would expedite things. However, the medical provider could not find that particular location in her system. She found a satellite clinic and told me that would be good enough. They are all in the same hospital system. All the clinics in that hospital system should be able to see the referral.

When I contacted the main medical clinic, I was told I could not be seen by them because the referral was sent to the satellite location. So, I called the location where the referral was sent to. The woman did not think I could be seen at that location. I am too medically complex. But, nonetheless, she sent in a request for one of the doctors to review my case. The woman promised to call me back.

When I did not receive a callback, I called the satellite clinic again. I again talked to the very sweet receptionist. She put me on hold and called the doctor. The doctor quickly reviewed my case and said I was too medically complex. I needed to be seen at the main medical center location.

I called the main medical center and explained the satellite clinic would not see me. I needed to be seen at the medical center. Finally, the woman said she would put the referral into the system. She said she would call me back with an appointment once the doctor approved the request. The clinic never called me back.

I researched other infectious disease doctors. This morning, I attempted to schedule an appointment at an infectious disease clinic. I was told I needed a referral. Also, since I had seen an infectious disease doctor while hospitalized, I needed to go and see that doctor. When I explained I cannot see that doctor because he refuses to see me in the outpatient setting, the clinic told me I had to have my primary care doctor call the office and speak to one of the infectious disease doctors. They then "might" consider to take me as a patient. 

I decided this was a futile cause. My primary care doctor does not know why the infectious disease doctor will not see me. All we know is every time I have tried to get an appointment with the infectious disease doctor, my appointment is cancelled, and I am not allowed to reschedule it.

I tried looking in another city for an infectious disease doctor. Although the internet said there were infectious disease doctors at a couple hospitals, when I contacted the hospitals, they said they did not have infectious disease doctors.

I next found an infectious disease doctor located in a distant city. I called, and praise be to God, this doctor did not require a referral. I was able to easily set-up an appointment. I am so relieved to finally be able to see an infectious disease specialist. I am hoping and praying the medical professional is able to provide excellent care to me.