No End In Sight

It’s been nine weeks of low grade fevers.  Every day I have had a fever to some degree, usually peaking at multiple times a day.  A fever takes its toll on a normal body, so imagine what is does to mine!  It’s crazy.  I have been having a very hard time keeping up with school work and all my (group) projects.  I have responsibilities to meet and unfortunately, I have had to accept additional responsibilities in order to make sure that I succeed in my program.  It is difficult to write papers, go to class, do research and maintain a social life, when I have endless doctors appointments, procedures and just feel miserably sick. 

My doctors were working feverishly(pun intended lol) to determine the cause of the fevers and ensure that I do not have an infection.  I have had lots of diagnostic tests and blood work done, with all the results returning normal.  Last week, I had a transesophageal echo performed on me, where I was sedated and the doctors placed a doppler machine down my throat to check my heart for infection.  This too was normal and there was no infection found.  In the meantime, I still have no port and utilize the emergency room once a week for fluids to try to keep my POTS symptoms at bay.

Recently, my doctors have consulted with each other and determined that I do not have an acute infection.  This means that I will be able to have my port placement surgery next Thursday to resume hydration therapy.  Of course, next Thursday is right in the midst of week 10 of graduate school and finals.  It never fails.  Every week 10 and finals week so far in my graduate school career, I have something major happen health wise.  Last year, fall quarter I had port surgery a few days before a final, winter quarter I got sepsis during week 10, spring quarter I had port surgery less than 24 hours before my 211B(a MAJOR course in my program) final exam.  It never fails. 

My doctors are not pursuing other testing methods at the moment to determine the root cause of the fevers.    They believe that the fevers are another symptom(temperature control issues) of dysautonomia that I have developed.  Of course, there is no real treatment for that either that I haven’t already tried, so I will just have to live with it.  I was devastated by this news.  I wanted to give up and submit to the fact that this is my life.  I wanted to submit to the fact that I now have this limited functioning and decreased quality of life.  If I can have another dysautonomia symptom, who is to say I will not develop more?  I have to now figure out and readjust to this new setback.  Although there seems to be no end in sight, I cannot give up.  I refuse to give up, it is just not inside me. After a few days of reflection, I have decided to pursue other options for evaluation and treatment.  I genuinely believe that all of the health problems that I have experienced in the last few years are all related.  I want to pursue other options for diagnosis and treatment before more problems occur.  I refuse to believe that this is forever.  I have hope that it will lead to better outcomes and a better quality of life.

~Natasha

One Comment Add yours

  1. Johnnie Sue McGlinchey says:

    Hang in there Natasha. I can only imagine how hard POTS has made your life. I can sympathize with you. My Fibromyalgia has caused some similar symptoms, unexplained thermoregulation problems, chronic fatigue, chronic pain with varying levels in different parts of my body, brain fog, and depression. I don’t have issues with hydration like you do which impacts on all of body’s systems. One of the main things I can empathize with is the fact that we both look well. Our health problems are invisible, we don’t look sick. That seems to be difficult for most people to understand. In a way I’m grateful for that. I would be uncomfortable with having attention paid to me because of my illness. But, I also find it difficult to explain my symptoms, even to my healthcare providers. I myself don’t really know which of the symptoms I experience are due to Fibro and which may be normal symptoms of aging. I get very frustrated with my own body. Lizzie has alot of the same problems only her symptoms are generally worse and she is so much younger. It makes me mad that you and Lizzie and others like us have these unexplainable symptoms that are by their nature difficult to pin down and treat. I think about you and pray for you, for strength for you to accomplish your goals. I have faith that you will succeed you have accomplished so much and have so much more that you can and want to do. Keep trying don’t give up. Ask for help don’t let pride hold you back. I love you and I believe in you. You are going do amazing things in your life.

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