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(19) Running Myself Ragged and Dealing with the Medical Establishment (Part 2)

Dealing with the healthcare system can be a real headache, especially for highly sensitive people! In order to get quality and timely care, you have to be assertive…and sometimes downright aggressive! While most of us aren’t fond of conflict, it’s sometimes more important to fight for yourself than to feel comfortable in a situation. The wise advice my late mother once gave me comes to mind, “Speak up…or be left behind!”

In my last post, I wrote about how I ran myself ragged when I didn’t manage my stress during a grueling, multi-year effort to meet our goal of moving halfway across the country. I pushed myself way too hard…a terrible mistake that cost me my health for nearly two years! I would spend MANY months navigating a complex medical establishment in order to recover my health.

Just to recap…after getting settled into our new home, I suddenly stopped feeling well and started having issues with my blood pressure. I was exhausted all the time, and my concentration was off. I underwent many medical tests and tried different blood pressure medications, but nothing worked! Next came the referrals.

First, my doctor referred me to a urologist, someone I wasn’t at all impressed with, and who didn’t help me. After that, I was referred to a cardiologist who had a six-week wait time! When I told my doctor how worried I was about my blood pressure and asked his help in getting an earlier appointment, he said he couldn’t do anything. I was extremely frustrated! My doctor didn’t like it when I questioned him, but what was I supposed to do? I wasn’t getting better and needed answers!

Not knowing what else to do, I went on the internet and picked out a cardiologist on my own. I based my decision partly on who had the shortest wait time, which still ended up being two weeks. The doctor I chose had positive feedback online, but I didn’t have a good feeling when I met her. I felt she had programmed responses and didn’t listen to what I had to say. She ordered more tests, including a sleep study. I was diagnosed with sleep apnea and now use a CPAP machine. I was grateful for the diagnosis, and my sleep quality improved, but I still had high blood pressure.

The cardiologist then tried different blood pressure medications, even though I had already been down this road. None of the medications helped, and one of them made my blood pressure go even higher! I had been instructed to check my blood pressure at home and call if there were problems. As soon as I saw my blood pressure rising, I immediately called her office. I tried contacting her for three days, but she wouldn’t get back to me!

Shortly after that, my wife and I were out running errands. While driving, I noticed that the left side of my face was feeling numb. I was terrified! I thought I was having a stroke! We went straight to the hospital. They took me in right away and ordered a brain scan. Thank goodness that I didn’t have a stroke, but my blood pressure was off the charts!

I was in the hospital for two days and needed intravenous medication to get my blood pressure down. Had the cardiologist called me back, it’s unlikely any of this would have happened! The whole experience was extremely traumatic for me and my family!

In retrospect, perhaps I should have shown up in person at the cardiologist’s office and pleaded my case…or demanded to be seen. If that didn’t work, I should have gone to the emergency room. At that point, I had been struggling with high blood pressure for so long…that I guess I didn’t take the incident seriously enough. Hindsight is always 20-20.

After the “stroke scare,” I knew I needed someone I could trust to guide me through my medical crisis. I sought an internist to manage my care. I found one I was comfortable with, and per my request, the first thing she did was recommended a new cardiologist.

True to form, I had trouble getting an appointment with her recommendation. Since I wasn’t willing to wait a long time, I chose another doctor in the same group. The new cardiologist was nice and listened to my concerns, but I didn’t improve. He had a conservative approach, and I felt I needed someone willing to think outside the box. What was the point of trying the same things over and over?

Fortunately, I eventually got an appointment with the cardiologist that my internist had originally suggested. Within minutes of meeting this doctor, I immediately felt good about him! My HSP intuition is very accurate when it comes to doctors, so I knew this was a good sign. The cardiologist was very knowledgeable, had thoroughly reviewed all my numerous tests, and asked me what I felt was wrong. He was the first doctor who actually sought my opinion!

I told him that I had been chronically stressed for over two years with my move and all the problems that went along with it. I suspected that the stress had wreaked havoc on my system. I also mentioned that my blood pressure medication, which I had taken for many years, had been changed. I explained my sensitivity to medications and my suspicion that I was experiencing side effects. Although I had told all of my previous doctors the same information, he was the only one who took stock in my opinion.

After listening to me, the doctor put me back on the blood pressure medication that had originally worked for me and took me off another medication I was taking. He also put me on some nutritional supplements. After about a month, I started to feel better! When I went for a check-up, he told me that I could go back to the gym. In time, my fatigue, concentration, and blood pressure improved dramatically. It took about six months to get back to my old self, but I eventually got there! Whew!

After going through this experience, the key takeaways for me were:

  • Don’t push yourself too hard! While creating a “sense of urgency” can help you get things done, there’s always the danger of taking this approach too far…especially for a highly sensitive person! When I make a big change, my instinct (however unhealthy) is to plow forward quickly, despite the stress. This may sound counter-intuitive, but focusing intensely on “the next task” expedites my goal and hopefully ends my stress sooner. To make matters worse…in this case, I may have subconsciously used “hyper-productivity” to distract me from having to face difficult feelings related to all the changes in my life.
  • Give yourself time to decompress! It would have been wiser for me to take my time in unpacking and organizing our new home, especially after all the stress I had just experienced. Since I hate having unfinished projects, I instead jumped right in and worked as quickly as possible. Not taking a breather, not dealing with all the stress, and not fully taking the time to grieve for my mother took an emotional and physical toll on me, which I’m sure contributed to my health issues.
  • Trust your instincts when it comes to healthcare providers, and make changes when needed. Looking back, my HSP intuition was correct in every case! I also moved on quickly when I didn’t feel comfortable or get the results I wanted.
  • Be assertive, even if this is difficult for you. Don’t be afraid to ask questions and insist on getting the help you need. When I failed to assert myself strongly enough, I ended up in a dangerous medical crisis. Don’t make that mistake!
  • Find a doctor who actually listens to you and asks for your opinion. You know your body better than anyone else, especially when it comes to what is and isn’t normal for you. Your insight could end up being very important in helping to identify the cause of a difficult medical issue.
  • NEVER GIVE UP when it comes to your health! When it comes to dealing with the medical establishment, persistence is everything! No matter how frustrated you get, or what setback you face, keep on trying! I wish the system was easier, but it is what it is. I eventually found the right person to help me, even though it took a long time.

Have you had a similar experience with the medical establishment? Have you ever felt helpless when dealing with a medical crisis? How did you handle it? Did you persist in getting your needs met, or did you settle for less? I’m interested in any thoughts or comments that you have.

If you find my content useful, I would appreciate it if you would share it with others!

The next post, (20) The Mental Gymnastics of Coping with Physical Illness, is about my experience of dealing with an extended period of poor health.

About Cliff’s Big Move Series: In this series of blog posts, I chronicle a really “Big Move” that my wife and I made to move halfway across the country to be closer to our daughter. This was a HUGE change for us, as we had lived in our home in New Jersey for over 30 years! My mother had recently passed away, and our only daughter had moved to Missouri. It is my hope that this series will motivate you, as a highly sensitive person, to take on something that’s truly important to you. I tell the story sequentially in 23 posts, with each one numbered. It’s best to start at the beginning. You can access all the posts by clicking on the Cliff’s Big Move category in the sidebar.

This Post Has 7 Comments

  1. Lynn

    I’m glad you’re feeling better and got your blood pressure under control. That must have been scary when you thought you were having a stroke! I can definitely relate to your frustration with the healthcare system. My mother has recently been having a similar experience of getting endless referrals…all the while never getting answers. She keeps having to wait to see the next doctor, and her issue isn’t being addressed. She’s doing the best she can to manage and doesn’t complain much, but I know she’s frustrated. It’s true that you have to be persistent and assertive to get any help these days. I really hope things improve some day, but for now, I guess we have to do what we have to do. 🙁

  2. Cliff Harwin

    Thank you Lynn!
    It’s definitely frustrating to deal with the healthcare system. Unfortunately most people don’t know how bad it is unless they have to deal with it. We do have to speak up for ourselves if our issues are not addressed. I hope your mother finds the right doctor.

  3. Sherri Swinford

    I have gone head to head with the medical community over my mom’s health care. As an HSP, the egregious lengths that one skilled nursing facility (SNF) went to in order to keep my mom and her medicare money there, is almost unbelievable. It almost makes me lose my faith in humanity. I finally got frustrated and threatened to call 911, which they do absolutely do not want. But I knew there was something very wrong with my mom. She was totally confused to time and place, had not been eating or drinking.. No one would listen. The exec dir had previously said that i couldn’t take her out bc there was nothing medically wrong with her! I got her to the hospital in time to prevent her from dying of sepsis. They had not been checking the output in her briefs and her bladder was filled with urine. More than they had ever seen in a person not screaming in pain.
    Unfortunately, the next place was worse. They all had smiles. But they didn’t believe me when I tried to tell them that her catheter looked cloudy and w sediment (yes, she had a cath now), and she had that UTI confusion..2 days later, while I was there, she had a TIA, and I insisted she go to the ER..She was ok, but ER doc said she had obvious UTI! And it most likely caused the TIA…
    I had to fight for her to stay at SNF to finish rehab bc I knew I couldnt take care of her yet at home. She had rhabdo caused from taking a statin (Lipitor), which caused her not to be able to walk one day. It has been a long recovery. All the while, I visited her everyday for 3 months starting this past December 8th..sometimes 4 hours, sometimes 12 hours. I have a chronic illness and the adrenaline was getting me thru. Now she’s home and I’m blessed bc she is 94 and she is not alone somewhere. But I am tired, and run down. And sometimes would just like to lie in bed and rest. Trying my best to take care of us while I have to map out my appeal for med services not paid. I am overwhelmed. Still missing my Dad who passed in 2008. It is his birthday today. I moved home to take care of my mom. ..But I def became much more agressive with doctors and all healthcare providers when I knew I was working on behalf of my dad:) Sorry to go on so long..I may write a book on my years with the health care system and my disappointments. It hurts my heart every time I get a bad dr..It will take a very long time to get over this experience. I came away feeling so hopeless for all those who have no loud advocates like me. But gosh, so many poor people with no visitors..ever..

  4. Cliff Harwin

    Hi Sherri,

    I applaud you for having the tenacity to “fight” the medical establishment. We DO have to be our own advocates. Keep using your HSP intuiton when you think something isn’t right.

    You’re doing the best you can under difficult circumstances. That shows great strength of your character.

    You might want to check out free resources at your library that can possibly help you with your medical expenses.

    You should write a book about your experiences. It will definitely help others. You can do this by keeping a journal and writing in it every day. You can put your thoughts into an outline. This will provide you a framework for your book. Writing is a healthy outlet to deal with your frustrations.

    I wish you and your mother the best of health. Take care of one situation at a time to prevent overwhelm. Again, your doing the best you can. You’ve proved that you can handle anything that comes your way.

    All My Best,

  5. Mary Kirsch

    I’d just like to affirm all the comments made so far. Being on Medicare I not only have to deal directly with the medical personnel, but Medicare and especially Part D. Every year I have to request an “exception” for coverage of the brand name drug which my doctor advises me to stay on, not take the generic which came out in the past few years. This drug is extremely expensive and absolutely necessary for my health. Each year. I spend hours on the phone with the staff at the clinic requesting he necessary information. Usually I get a denial from the insurance company. Then there is another round of phone calls to request an appeal. Usually I get a customer rep. who is in another country and has an accent that makes it difficult to understand. Phone calls are often an hour long before the issue is settled. It takes many phone calls to many reps as well. Every year it causes a great deal of anxiety. The system seems to be out for their profits and not the good of the patient. I am grateful that the brand name drug has been covered each year as it would be over $8,000 out of pocket. Who says we don’t need reform of our medical system?

    I know this is a minor thing compared to the stories above, yet it is another example of how medical care is made as difficult to obtain as they can. I second the motion: One needs to be assertive and even angry before something gets done.

    1. Cliff

      Hi Mary,

      Thank you for sharing your experiences. I definitely share your frustration.

      We ALL need to stay strong and assert our needs in dealing with the medical establishment. It seems that they try to wear us down!

      Don’t quit. The more people complain, the better we’ll be listened to.

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