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.

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. Depending on the statistics, the infection has a 22-74% mortality rate.

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.

A Little Frustrating

Last week, I was notified by my respiratory therapist the medical equipment company wanted to switch my Trilogy 100 to a Breas Vivo 45 LS. Since I do not know anything about the Breas ventilator, I did a quick YouTube search to find out information about the machine. One of the videos stated the Breas Vivo 45 LS has been recalled. I found a copy of the recall online.

 The machine off gases formaldehyde in warm temperatures. The ventilators are not supposed to be used in temperatures above 86 degrees Fahrenheit (30 degrees Celsius). When I read this information, I was immediately concerned. Summertime temperatures can easily go over 86 degrees where I live. If I got this ventilator, I would not be able to leave home during the summer months. This machine was not for me.

I reached out to my medical equipment company. They told me I can either switch to the Breas or to the Trilogy Evo. (I have tried the Trilogy Evo in the past, but I cannot tolerate the machine). The company is not concerned the Breas releases formaldehyde in warm temperatures.

I was not satisfied with this answer. I emailed the company Breas and asked if using the Breas Vivo 45 LS in temperatures was safe. A woman emailed me back. She asked for my phone number and said she would call me. She also said she would forward on my concerns to a clinician and a distributor in my area. They were going to contact me to let me know if the Breas Vivo 45 LS was safe to use.

That all transpired on Friday. Today, no one called me back. Furthermore, I received an email stating my case was closed, and there would be no further contact with the company Breas.

I was a little upset by this. My medical company is distributing the Breas Vivo 45 LS, and I have no idea if it is safe to use. And now, Breas is also not contacting me to let me know about any safety issues with their ventilator.

I wish I could stay on my trilogy 100, but I was told I have to change to a different machine because the medical company needs to send back all Trilogy 100's to the manufacturer since they have been recalled.

I patiently wait, wondering how this will all turn out. "Trust in the LORD with all your heart, and lean not on your understanding. In all your ways, acknowledge Him, and He shall direct your path." (Proverbs 3:5-6)

Just an Eerie Coincidence?

This week I did something I do not normally do--I filmed and edited a video to be released the same week. Normally, there is a lag time between filming, editing and uploading. However, since I have been extremely busy, I have almost zero videos ready for release. So, I set forth on this hurried mission.

Yesterday, as I was editing, I decided to include photos of two figure skaters. I am not sure why, but I felt as though I wanted to include photos of people figure skating in my video. I finished the final touches on the video this morning. I now need to upload the video to YouTube to be released on Sunday.

I heard about last night's plane crash in Washington, D.C. I was devastated to hear so many people died in the horrific accident. I then was further gutted when I learned 14 people who passed away were part of the figure skating community. Then a cold shiver ran down my back when I recalled yesterday I had an intense feeling I needed to honor figure skating in my video.

My deepest condolences to all those affected by the crash. May the memories of those who perished be a blessing.

Having my day planned...and then it all changes

Yesterday, I had a big day planned for myself. After feeling poorly for the first part of the week, I woke up yesterday morning after a very long night's worth of sleep and decided I was going to be productive. I needed to edit a YouTube video. I then had a few things I wanted to get done such as wiping off my bathroom counter and repairing some tears in my comforter.

I was getting ready to begin my day. I was so excited to finally be getting some YouTube editing done. Then, the phone rang. It was a family member who needed me to go with him to the city. I was bummed. Everything I had wanted to do for the day would be put on hold. However, I agreed to my relative's request.

As I was getting ready to leave, I realized I missed a telemedicine appointment. I frantically called my doctor's office, apologized for missing the televisit and asked to reschedule. Thankfully, I was able to get an appointment for later in the day.

When I got home in the afternoon, every fiber of my body throbbed with pain and exhaustion. My blood clots were raging out of control, causing a horrible headache. I crawled into bed and hoped taking many doses of blood thinning medicine would help. Eventually, the headache calmed down enough to allow me to sit up.

I logged into to my telemedicine appointment. The visit was extremely fast. I was so grateful the appointment went well.

I spent the night catching up on YouTube correspondence. I have been extremely behind on social media. As hard as I pushed myself, at 9 p.m., I decided it was time to go to bed for the night. I was too exhausted to keep my eyes open, and my head was throbbing.

I slept long, but when I woke up this morning, I was very tired. I could barely move my hands due to pain and muscle stiffness. I have attempted to be productive today, but I am just too fatigued to move. I suppose I should not be frustrated, but I am. I wanted to get a YouTube video edited so I could move on to other YouTube videos.

Hopefully, I will be able to rest this weekend, and start next week with more energy. Maybe one day, too, I will finally have the time and energy to repair my comforter. Have a great weekend.

Remember the world does not always like kindness

This week has been very chaotic. On Monday, I went to an event. A strange thing happened. Two people gave me compliments. I was shocked and stunned. As of late, so many people have vented their dislike of me, it was hard to accept kind words.

The following day, I met two new people. I did my best to be hospitable. Could I have done things differently? Yes. But I thought I was very cordial and tried hard to be kind to the people. The two people let me know they were displeased with me. As hard as I had tried and continued to try, the people did not like me.

Last night, I did something which is hard for me to do. I called someone on the phone. The phone call was one of concern. The person is having health issues. I wanted to get an update and ask if the person needed any prayers.

The phone call was a disaster. It was as if I walked into a land mine. The person was hostile towards me and was very upset I called. I wanted to ask the person a few things, but the phone call disconnected. I waited a few minutes, and then I called the person back. The person did not answer the phone. I left a message and asked the person to call me back. So far, my call has not been returned.

After the great start to the week, I need to remind myself there are those in the world who have an immense dislike towards me. I try to be nice. I try to be kind. But so often, as hard as I try, my efforts are met with disdain and hate. I have no animosity toward the people this week who were less than kind to me. In fact, I have prayed for them. They need peace, comfort and kindness in their lives. As much as I would like to give that to them, they cannot accept the gifts if they are unwilling to receive them. My heart aches as I think about these very broken people.

What is that smell...oh, it's me!

Many people in this world love showering. I am not one of those individuals. It takes a lot of effort to wrap up my IV line (PICC line) in plastic and keep it dry during my encounter with the water pouring down on top of me. I shower as fast as I can because the exercise in hygiene really tires me out.

And the part I hate the most is feeling "wet" for the next four hours (maybe more maybe less depending on the day). I do not like to feel damp. With having long hair, it takes about four hours for my hair to dry, and even after it dries, it still feels damp to me. My trach tube holder gets wet when showering, and it takes several hours for that to dry. It also does not matter how much I dry off my skin, my body just feels damp for several hours after showering.

With all that said, I do not like showering. I try to plan when I shower to when I film YouTube. My hair looks the best the day after I shower. So, I attempt to coordinate my showering with when I am going to film YouTube.

This week, my hair was a tangled mess from filming last week. (I usually have to use hair spray in my hair, but last week, my hair was doing its own thing. I had to use A LOT or hairspray to calm down my unruly hair.) I meant to wash my hair on Sunday because I had an appointment on Monday. However, that did not happen. I did my best on Monday to run a brush through my hair and pulled my hair into a braid.

My appointment went very awry, which caused me a lot of stress. Stress makes me sweat profusely. Even though I was freezing to death because the heat was not working in the building, after I left the appointment, I was drenched in sweat. When I got home, I stunk. I needed to shower. Unfortunately, I was far too exhausted to endure a shower.

A friend came in from out of town yesterday. I was able to meet her and talk with her. I hoped she did not notice that I really stunk. I was wearing several layers of clothing and hoped she did not breathe in when hugging me.

This morning, I took off my pajamas, and an awful odor hit my nostrils. I gasped to myself, "What is that smell?" I then realized it was me. I mustered up the strength and energy to take a shower by resting all morning. This afternoon, I endured the torture of taking a shower, and now I am battling my hair being wet and feeling gross because I showered. But at last, my hair is free from the hairspray, and I no longer smell.

Now that my hair is clean, I should probably film YouTube tomorrow. I have no scripts written and have no ambition. Perhaps tonight, I will be struck with an amazing burst of creative energy...if not, I will spend tomorrow lamenting that I have not filmed anything this week.