Happy Ninth Anniversary! How Things Have Changed

Nine years ago, I was at a turning point in my life. My best friend, Milly, had passed away from complications from Mitochondrial Disease. Milly had a YouTube channel. I thought about starting a YouTube channel in her honor, but I did not have a computer with a camera. 

Furthermore, I knew NOTHING about creating YouTube videos. Instead, I decided to create a blog. What I could never have imagined is how instrumental starting a blog would be for my (future) YouTube channel. Every week, I looked forward to posting on my blog. I thought long and hard about the words and stories I wished to tell. I wrote and re-wrote many posts. Writing my blog was my mission and my passion.

Surprisingly, my blog reached an audience far and wide. At one time, I counted people from over 70 countries had visited my blog. Not too bad for a blog I did not promote or advertise. In 2020, after being dared by my mom to post a YouTube video, I switch my time from writing blog posts to creating YouTube scripts. I thought, perhaps, having this blog may have been a waste of my time. But, as time progressed, this blog became a HUGE asset. 

Many things happened starting in August 2016. For example, at the end of August (2016), I began having severe difficulty breathing. And from there, I began my adventures trying to medical treatment for my respiratory failure. 

I have read and re-read some of posts to get an understanding of the emotions I was feeling and also the things I went through. I have used many of my blog posts as the basis for a number of my YouTube videos. One video in particular, someone accused me of "not remembering events correctly" because it happened a few years ago. I chuckled because the entire script for that video was almost an exact copy of several of my blog posts, which were written immediately following the events. 

This blog never turned out the way I had imagined it would. I dreamed this blog would create a huge following and would be a blessing to people all around the world. This blog never attained a massive following. However, my YouTube channel has. I wish I had more time and energy to devote to my blog, but I end up spending almost every free moment I have doing something related to YouTube. 

As my YouTube channel has grown, more people are visiting this blog. I have told myself over and over again, I will post more on my blog, but so far, that has not happened. (I actually have posts I really want to publish. I just forget to come on here and publish them as the days speed by.) 

To all those who have supported me on my blog, thank you so much. This blog means a lot to me...and hopefully, I will be more diligent to post more in the future. (I mean, you-all should be proud of me. I am getting this post published on time!) Happy Birthday to this blog. I hope everyone has a great weekend.

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, and molybdenum. Thankfully, I have everything except the molybdenum. This morning, I ordered molybdenum.

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.

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.

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/she 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).

Racing against the clock. I am exhausted

Two weeks ago, I developed a serious infection. I was hospitalized and started on IV medicine. I was released from the hospital. Since coming home, I am doing poorly. I have a significant headache, neck stiffness and out of this world exhaustion. I am frequently short of breath and feel as though I cannot move without becoming dizzy.

I have reached out to specialists to help me. However, no one has reviewed my case. I saw my primary care provider. She sent in a referral, but the referral was faxed to the wrong clinic. (The doctor could not find the correct clinic in the system. Thus, she cannot fax it to the correct clinic.)

I am so tired fighting. The infection rages on.

I wonder why things have to be so hard. I know at any moment God can move mountains. God can arrange for me to be seen by a specialist. God can cure me. And yet, I wait. My IV medicine runs out next week. If I am not prescribed any more medicine, there is a high likelihood the infection will flourish.

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.