A Look Back to 2020

This last year has been one of the most challenging years of my life. But with all obstacles, there is also a satisfaction I made it.

Here are a few highlights:
In January, my infectious disease doctor and I agreed I should get a port-a-cath. A port is a device implanted in your chest and is threaded into a large vein which allows a person to have permanent IV access. With this device, I could get IV antibiotics at home without needing to go to the hospital and have an IV line (PICC line) placed. (Due to having a ventilator and tracheostomy, I have frequent lung infections which often require IV antibiotics.)

There are some decisions I wish I could got back in time and change. This is one of them. I have a genetic condition which affects my connective tissue, specifically it affects my joints and blood vessels. With Ehlers Danlos Syndrome, my blood vessels are prone to collapse anytime I am stuck with a needle. The thought never crossed my mind that getting a port could also cause negative consequences.

As soon as the port was placed, I was in a tremendous amount of pain. My heart was racing; my limbs were shaking uncontrollably. I thought I was going to die from the pain. I was sent home and told to take Tylenol. (What I did not know at the time was the vein in which the catheter was placed had collapsed. This prevented blood from the left side of my head and neck to be able to return to my heart.)

Over the next days and weeks the pain grew worse and worse. I had an incredible amount of pressure on the left side of my head and neck. It felt as though my head was going to explode!

The upside to this all is it helped alleviate a fear I have had. In 2010, after I had returned from the magical clinic in Minnesota and was told there was nothing they could do for me, I wanted to commit suicide. God intervened before anything ever happened, but I have always been afraid if I was in that much pain and distress again in the future, would I take my own life? Thankfully, I now know the answer is no. During the 42 days of being in intense agony, I clung to God and kept asking for His help. This situation helped me realize how far I have come since 2010. For that, I am tremendously grateful.

In March, I had the port removed. It took several weeks for the pain and all my symptoms to go away. During this time, my beloved pulmonologist dropped me as a patient. That event completely shattered me emotionally.

In April, my mom began watching endless YouTube videos due to the lock-downs. She told me I should have my own channel. I have for a long time wanted to start a YouTube channel, but I am not very technology savvy. After being very sick this winter/spring and then being emotionally drained from my pulmonologist dropping me as a patient, I was at an all-time low. I figured I would shoot a YouTube video and if it failed, it would not make a difference because I really could not be any lower than what I was. At the end of April, I filmed my first video. To my shock, it was a success! I kept shooting one YouTube video a week, and the channel has continued to grow and prosper.

My YouTube channel has forever changed my life. I have been connected with others who have ventilators and/or tracheostomies from all over the world. I am blessed to be able to help others and to share in our quest to live the best life we can.

YouTube has allowed me to do what I love—share medical information, tell stories, see the good in all situations and educate the world about some of the conditions I live with.

I invite you to check out my YouTube channel. Click here to view my YouTube channel.

The major lesson I learned from 2020 is sometimes you have to be completely shattered to the ground before you will risk starting a new endeavor. The process is painful, but in the end, shattered pieces can create a beautiful mosaic.

I hope everyone has a safe and blessed 2021!

Back to Where I Started

As the days draw closer and closer to January 1, I have been trying to get all my prescriptions filled. It is not that I need them filled or will incur more financial strain if I do not get them, but my insurance changes at the beginning of the year.

The pharmacy I currently use will no longer be an in-network pharmacy. I have yet to completely understand what this means for me, but the preliminary answer has been on January 1st, none of my drugs will be covered by my insurance at the pharmacy I usually use. This means I will have to sift through all my prescription records at my current pharmacy and have my new pharmacy call my old pharmacy to transfer the prescriptions. This would not be a big deal if I took medicines consistently, but many of my drugs are once in a while drugs. I get them filled once or twice a year. To alleviate this hassle, I have trying to get all my meds filled. That way, I will be set for a majority of next year.

I have one prescription which I have a three month supply left on the drug. I submitted the drug to be filled online last week. Today, I received a notice my insurance does not cover online medicine refills. I need to call my local pharmacy and have them fill it. I call my local pharmacy, They tell me they cannot full it because it has been filled at another location. I am given the store number. I either was given the wrong store number, or I wrote it down, but a quick internet search told me the branch was located in the Chicago area.

I call the Chicago branch and talk to a very sweet man. (I believe he was the pharmacist.) He looks up my information and tells me the store number where the prescription was filled is the online branch. He gives me their direct phone number.

I call the online branch. I am told there is an issue with my account. There are two insurance numbers on it. The woman asks for my insurance information. She updates the system and says she will try to get the drug out to me ASAP. I hang up.

About an hour later, I receive an email, My prescription cannot be filled. I had another prescription filled at the beginning of the month. I take nine tablets a day. The prescription was for 90 pills. Doing some simple elementary math, ninety pills would be a ten day supply. According to my insurance, ninety pills should last me 30 days. Hence, I am not eligible to fill my prescription until after January 1st.

I could call and contest my insurance and explain 90 pills will only last me ten days. But I have already lost an afternoon calling pharmacies and getting no where. I will just wait until after the first of the year and try to get the prescription transferred. If I am unsuccessful, it is not a huge deal. I will have to try to find a primary care doctor and attempt to get a new prescription sent to my new pharmacy. (I really don’t have a primary care doctor. I usually ask for prescriptions when I am hospitalized. It saves me time and effort trying to explain my medical conditions to yet another doctor.)

So, at the end of this all, I am right back where I started. I have a prescription which needs to be transferred to a different pharmacy after the first of the year.

 

I had an idea; God executed the plan

 The last couple days, it has been on my mind to change the line extension on my peripherally inserted central catheter (PICC line). I noticed yesterday, the plastic, which the line is made from, seemed to be more rigid and not as flexible as I remember it once was. I thought to myself, “I should probably change this extension before the plastic line cracks.”

I was reminded of an incident which happened six weeks ago. I had placed a line extension on my PICC line, but the plastic seemed to be stiff. The extension was from some PICC line supplies I had received two years ago. The packaging said the line extension was good until 2022. On morning, I woke up and the end cap completely broke off from the extension set. Thankfully the extension set was clamped or I would have bled out during the night and/or possibly have gotten an infection in my line. I was able to replace the extension line on my PICC line without any repercussions. Thinking about this event made me contemplate changing out my line extension. I went to bed and pushed the thought out of my mind.

When I woke up in the morning, I was shocked to find my extension set had disconnected from my PICC line during the night. It did not break, but the extension line somehow unscrewed itself from my PICC line. I was left flabbergasted, but grateful there was nothing wrong with my PICC line. When the extension set disconnected, the cap on the end of my PICC line automatically closed. There are no risk for bleeding out or infection.

I smiled and laughed as I picked up the disconnected line set. “Well, God. I guess it was time to change the extension on my PICC line. Thanks for helping me out. I will now put a new extension on my PICC line.”

I found a new line extension in my medical supplies dropped off last week by my medical company. I collected the needed materials and placed them on the dining room table. My mom cleaned off the end of my PICC line and placed a new extension on to my PICC line. And just like that, the task was done.

A Blast from the Past

As I go from week to week creating material for YouTube videos, I find this blog a wealth of information. Many of my YouTube videos are based on one of my blog posts. With that said, it is always a walk down memory lane as I re-read my experiences from that last 4+ years.

It is always a mixture of emotions remembering and reading about my previous experiences. I have learned so much. And as much as I want to say I have grown spiritually, I am always blown away when I read about my faith. Really? I had that much trust in God all the way back in 2016?

As I read my blog posts, I am sad when I read about a bad medical situation, but I always smile as I think about the miracles and abundant blessings God bestows upon me. I rejoice reading about good times, and thank God I made it through some really horrible scenarios. And sometimes I just laugh.

One thing I am always grateful for is not knowing how situations will pan out. I am grateful I could not foresee three years ago all the pain and mental anguish I would endure during the next year as I tried to get medical treatment for a cyst which was blocking my main pancreatic duct. (Translation into every day English: a cyst was blocking all the enzymes my pancreas was releasing to digest food. Any enzymes my pancreas made stayed in my pancreas and digested my pancreas.)

I sit here three years later in another pancreas flare-up, I wonder how this will turn out. Do I have another cyst, or is scare tissue obstructing my pancreas duct? What is causing my increase in pancreas pain? What can be done to relieve this pain? Like all things, I will just have to wait until one day this too will be a blast from the past.

Suddenly blessings appear

Sometime in the last 12 years, my life has been turned into a series of unfortunate events. Now the events which usually transpired were never huge, major catastrophes, but it seemed simple things were never simple. I would finally get a doctor who understood my medical case, and the doctor would move out of state to take a job at another medical facility. If I would finally get a diagnosis and be referred to a doctor who could help me, I would often be told my case was too complicated. I should seek care else where. I finally abandoned the medical community and started living my life the best I could.

This all worked until May 2017 when I got a tracheostomy and was started on invasive ventilation. Now, I needed medical professionals to help guide my case. I was in unfamiliar territory. Seeking medical care often turned into a fight to stay out of nursing homes (because being on a ventilator is too complicated to be managed at home), and I even had to fight to stay alive. (Some doctors told me I was too complicated. It was time to give up, put me in a drug induced coma, disconnect my ventilator and let nature take its course.) I fought so hard to try to get proper medical care, but everything would often crumble around me.

In July 2018, I acquired a bad bacteria called pseudomonas. I quickly detected the new infection because my sputum changed. I begged for medical intervention, but the bacteria was not taken seriously. I was sent home. Three weeks later, I was in the emergency department, very ill. I was admitted to the intensive care unit (ICU). The bacteria became resistant to the antibiotic I was being given. I was not told this. I was given more and more of the same antibiotic. I went home after 12 long days of being very sick. By the time I got home, I was coughing up lots and lots of blood.

Five days later, I was back in the emergency department, extremely sick. I was admitted to the ICU, and I was finally given a different antibiotic. After five days, I was sent home with no antibiotics. My bacteria then became resistant to all antibiotics. Subsequently,  I had to take an extremely expensive, new and experimental drug which caused an anaphylactic reaction. I was then placed back on a drug my bacteria was resistant to.

From this time forth, it has been a constant struggle to get antibiotics. Thankfully, my bacteria has changed back into being sensitive to most antibiotics. This means, the cefepime I was usually given was now effective against the bacteria. I tried and tried to get a long course of antibiotics to get rid of this infection, but my efforts were often thwarted. Something would always happen which impeded me from getting a long, full course of antibiotics.

This spring, I was absolutely exhausted. I was very sick with multiple infections in my airways. When I gave up and stopped fighting, suddenly everything started working in my favorite. I was finally given a month’s worth of antibiotics. The infection cleared, and I was relatively healthy for six months.

When I became sick again this fall, it was a battle to get antibiotics. I was miraculously set up with three weeks worth of antibiotics. But it was not long enough to clear the infection. I remained sick. To my shock, my doctor in the outpatient setting prescribed another month of IV antibiotics. When this all seemed to be crumbling again due to miscommunication, God arranged for some miracles. Suddenly, I am now on a long course of IV antibiotics.

After fighting for so long, suddenly everything seems to be working in my favorite. I usually am in and out of the hospital every two to three months with a bad respiratory infection. Now, in the past nine months, I have only been hospitalized once for my pseudomonas infection. That is an incredible blessing and miracle.

Trying to explain pancreas pain...it's not my stomach!

I go to my medical appointment today. I am famished from lack of food and water intake. I take three small bites of an apple and drink a little bit of water before heading into the medical office. By the time I see the nurse (she will be the one doing the appointment), my body is trembling, and I am fighting hard to breathe from the pain shooting forth from my pancreas. I can barely move my left arm from the incredible pain radiating to my left shoulder. I am fighting hard not to scream.

The nurse tells me even though I do not eat gluten, I am probably reacting to eating gluten unknowingly. I explain I do NOT eat anything except fresh or frozen fruits and vegetables. I do not eat any packaged products. The nurse decides maybe it is H. pylori causing my issues. I have been tested numerous times for this bacteria. I even had an endoscopy in September which included biopsies for the bacteria and blood and stool tests. In 12 years of being tested for this bacteria, all tests have been negative. The nurse insists it could be lurking around my stomach somewhere making me sick.

The nurse keeps pushing medicine which blocks the acid in the stomach. I CANNOT take these medicines. I do not have heart burn, but these medicines give me the worst heart burn, nausea and make me puke my guts out. I have been told this is probably because I have low stomach acid. These medicines decrease the acid in your stomach. If you already have low stomach acid, decreasing it even more means food is not broken down in your stomach. Undigested food will try to enter your small intestines and cause MAJOR GI upset. The nurse cannot comprehend this. Maybe I need to try a different medicine to decrease my stomach acid. I give up trying to tell her heart burn is NOT the reason I am here today. I HAVE PAIN IN MY PANCREAS!!!

I cannot eat any food in the morning. In the afternoon, I can eat a tiny amount of vegetables and some water. My pancreas spasms, causes intense pain and radiates pain to my shoulder. The spams are so powerful, they make it impossible to sit up. At times, the spasms are so violent, I double over in pain and cannot move. It is somewhat manageable with powerful pain medicine…pain medicine which will probably run out all too soon. At night, I can swallow a little bit more food. The pain and pancreas spasming remain, but it is tolerable. When I go to bed, my pancreas pain and referred pain to my shoulder make it difficult to sleep. Then, in the morning I start the day all over of fasting until late afternoon.

I leave the appointment in frustration. The nurse orders some basic blood work and a stool sample to check for H. pylori. (I just had these tests done in October by this clinic. But, the nurse is convinced H. pylori is causing my issues.)

I don’t know what to do. I am trying to see a different doctor, but the next appointment is not until December 30. I am not sure I can wait that long. Malnutrition, my pancreas spasming and the pain are greatly taxing my body. I look at the calendar and ask God for a few Chanukah miracles. I am in so much pain. I am so tired.

Food vs. Pain: It begins again

 Since February, I have been experiencing significant pancreas pain. It started out as a nuisance. I could not figure out why the area around my belly button hurt. Finally one day I pressed on my belly button, and the pain radiated to my pancreas. My heart broke when I realized it was my pancreas which was causing the pain.

In 2018, I had a similar experience with pancreatic pain. Unfortunately, I tried to fight it out for a long time. I ended up losing a lot of weight and had several health crises before I was able to have a procedure done to mitigate my pancreas issue. This time, I thought, I would get treatment early.

I had an appointment with my GI doctor in August. In September, I had a procedure done which found my bile ducts were inflamed. In October, I had another procedure to clean out and open up my bile ducts. This time, the pain did not go away.

I kept telling myself I was imaging my pain was getting worse. In November, food was making me really sick. I changed my diet to be almost strictly vegetables. This alleviated some of the pain. During the week of Thanksgiving, the pain was getting bad. I desperately tried to eat turkey on Thanksgiving, but I became extremely sick and developed horrible pain in my pancreas after taking a few bites.

Last week Friday, I became abruptly sick in the early evening. I went to bed. I felt incredibly nauseas. I took some anti-nausea medication. I stayed in bed for the rest of the day. Over the weekend, the pain was intense. I pushed through. I would wake up in the morning with bad pain in my pancreas. When I ate, the pain became worse. I would go to bed. In the evening, the pain would lessen to allow me to eat.

Yesterday, I was in severe pain. I stayed in bed. In the evening, the pain miraculously lifted. I was able to eat some food and enjoy time out of bed.

This morning, I woke up in severe pain again. I tried to eat some soup and a small tangerine. The pain exploded in my pancreas. I couldn’t sit up. I was doubled-over. I tried and tried to get over the pain. When my body would not stop shaking uncontrollably, I took a half tablet of some emergency pain medicine. I waited. It did nothing. Over an hour later, I took another half pill. Nearly an hour later, I had pain relief. I was able to sip some water.

Now, the pain medicine is wearing off. I have eaten very little. I think to myself, “I should eat something,” but I can feel my pancreas and intestines are very temperamental. They ache and the pain is significant. Do I dare try to eat? Do I want to waste another precious pain pill?

I am thankful I was able to call and get an appointment to see a provider at my GI doctor’s office on Friday. Maybe she will be able to help. I am tired of fighting through this pain. I wish eating was not such a constant battle.

A Happy Accident

As I have been filming my YouTube videos and learning how to operate a Mac computer, I have been on a steep learning curve. There are constantly things I need to figure out how to do. I am very thankful and grateful I watched a few YouTube videos which mentioned a some short cuts on my computer. For example, when using iMovie, you can start and stop the video by pushing the space bar.

One shortcut someone mentioned in her video was using command shift 4 to get a cursor. You then have to drag the cursor to highlight what you want to screen shot on your screen. Once you let go of the cursor, the image will be captured as a photo. This is a great feature. I constantly use it. But there is one problem. Often I am trying to capture a slide or just a small  area of my screen. If I do not get the cursor correctly lined up, the screenshot is a little bit askew. This is not a big deal, but when there are two slides back to back which I want to use in my YouTube video, this causes the frame to jump when switching between slides.

Tonight, I was working on my pre-production for my next YouTube video. I thought I hit command shift 4, but instead of the compute taking a screen shot, I got a preview window with the ability the adjust the screen shot to the correct dimensions. I made the box bigger and lined it up with the outline of my slide. I then hit the “capture” button at the bottom of my screen. Then, the computer took the screen shot. I was baffled how I did this. I tried doing it again, but I just got the regular screen shot cursor.

I then thought, maybe I hit command shift 5 on my keyboard instead of command shift 4. I tried the new key configuration and behold, the box appeared to adjust the area on my screen I wanted before the computer took a screen shot. I was absolutely thrilled! After all this time struggling with the cursor on my keyboard to try to get the image I wanted inside the screen shot box and take a screen shot, now I can preview the area on my screen I want to capture and adjust its dimensions before the computer takes a screen shot. Wow! This is going to save me so much time and make my videos look more professional. I love when God provides a wonderful happy accident!

World AIDS Day 2020

On December 1st of every year, we take a day to recognize a disease which has ravaged many communities and populations. This year, the fight to end HIV/AIDS, has taken a backseat to COVID. Resources and medical professionals have been shifted away from HIV/AIDS care and prevention to deal with a new virus. Unfortunately, this has left many people in desperate need of medical attention.

During 2020, approximately 12 million people are waiting to receive care for HIV. (HIV is the virus which causes AIDS.) One of the places most hit by HIV/AIDS this year has been South Africa. There have been about 225,000 people with HIV/AIDS in the South African province of Gauteng who have discontinued their anti-retroviral treatments this year due to decreased access to care and other issues which have arisen from COVID. This is just one province in one country afflicted by HIV/AIDS.

It is hard to calculate how many people have not sought treatment for HIV/AIDS worldwide due to shortages of medical staff, testing, resources and other difficulties which have arisen due to COVID. The year 2030 was the year slated in which HIV/AIDS would be eradicated from the world. However, COVID has delayed progress on medical treatments, resources and research. At this moment, it is hard to know how far back the fight against HIV/AIDS has been pushed, but countless people have been affected.

Please take this day to remember those around the world affected by HIV/AIDS. There are about 38 million people around the world infected with HIV. Pray for the approximately 700,000 people who will die from AIDS-related complications this year. Pray for the areas of the world most afflicted by this virus—South Africa, sub-Saharan African countries, China, Latin America and the Caribbean. Pray that access to testing and medical treatments will be readily available to those who need them. As for me, I keep praying that some day soon this virus be nothing more than a distant memory.