Boring Details of Julie's Health Concerns
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About the Recent Changes at JByrd Yoga
I include these details here for a couple of reasons. First of all, many of you are curious as to what happened to me and have not been following along in my current event postings with the emails I send. Nothing I am writing here is secret and I have freely shared these details before, so here they are in summary form.
Secondly, I hope that someone out there may be helped by witnessing me go through this journey of illness to recovery. Most of us will go through a major illness at some time in our life. None of us are immune to a health misfortune that can come on suddenly be it from injury or illness. We may find ourselves tossed up on the shores of long-term illness and disability at a moment's notice.
Instead of fear, I suggest we craft a habit of loving care for ourselves so that before any sickness we are doing our best to live with vibrant health. Thus if we do go through some malady, we are more capable of overcoming it. It should also be noted that full recovery can take a long time and doctors cannot always figure out what is wrong with us. Despite this, we should still do our best to take loving care of ourselves and search for ways to restore our health through whatever means we can.
Timeline of Events
- Late September 2021 - Kidney Stones
- Early October 2021 - Surgery to remove kidney stones
- Late October 2021 - Gynecological Drama
- November 2021 - March 2022 - Unexplained pain and fatigue
- March 2022 - Horrible headaches began
- March - July 2022 - Horrible headaches got worse with no relief
- July 4th, 2022 - Horrible headaches started to get better
- July 2022 - January 2023 - Unexplained extreme fatigue and malaise
1. 09/2021 - If you have ever had a kidney stone then you already know the pain these can cause. Mine came on as a sharp stabbing pain in my left side/pelvis that was incredibly intense but mercifully brief. Then about a week later the pain came back. It was not as intense as the first bout but was a strong ache that would not go away. Then it turned mean and I was on the bed doing one of those cartoon legs spinning/running in place kind of actions while it had its way with me for about twenty minutes. That was when I knew for sure I could not wait this out and ended up at the emergency room. That led to CT scans that confirmed a probable kidney stone. After a consult with a urologist, there was another CT scan and then prompt scheduling for surgery within three days of them seeing my results.
2. 10/2021 - Most people who hear I had surgery to resolve kidney stones think that means they did some blasting of the stones with sound waves. Nope. That sounds fun compared to what they did to me. My surgery involved hours of general anesthesia, a long tube, a laser, grabbing of the stones with another tool, and insertion of a stent. They did not tell me that for some, the stent can feel as bad as having a kidney stone. I was one of the 'some people' group. For a week while the stent was in, I could not stand up for more than 5 minutes without the pain becoming too intense. Thankfully they removed the stent after a week. They also didn't tell me that some continue to feel pain even after the stent is removed. Guess which group I belonged to...
3. 10/2021 - Exactly one week after having the kidney stent removed and coming to grips with the fact that it would take a while (possibly weeks) before I would stop feeling pain, I developed a new problem. I began to bleed heavily. At first, I was convinced this was a kidney-related issue. A trip to the emergency room and several uncomfortable procedures later revealed this was a gynecological issue. They did ultrasounds, CT scans, pelvic exams, biopsies, and more ultrasounds and eventually, after several weeks, told me that they could not tell me why this event occurred, but that it appeared there were no tumors or other ongoing gynecological-related issues.
4. 11/2021 - 03/2022 - Here began my medical odyssey that involved searching for specialists, delays while seeking appointments, and a large number of medical tests including blood tests, CT scans, MRIs, X-rays, a colonoscopy, and ultrasound. All the tests came back essentially normal. As soon as the test results were revealed, each specialist said they could not help me further. They did not recommend a further course of action to take. They offered me no treatment of any kind.
5. 03/2022 - In the middle of March I experience a visual migraine. This condition is a pattern of scintilating light and an encroaching blind spot in your vision that persists for about 20 to 30 minutes and then resolves. These can be brought on by stress but sometimes they are caused by other, more serious problems.
I was not overly concerned since I had this kind of migraine before. Then a few days later I had another, longer and more intense visual migraine. In addition to the flashing lights, now I started to hear a very loud ringing in one of my ears. The flashing lights stopped after about 30 minutes, but the ringing in the ear continued. I googled what this all could mean and scheduled to see an opthalmologist to make sure nothing was wrong with my eyes. I also began to wake up with bad headaches each morning.
By the time the opthalmologist appointment arrived, my headaches were not only in the morning but lasting all day. He looked into my eyes and said he wanted me to get a brain MRI to rule out anything serious.
It took a couple of weeks for my insurance to approve the MRI. While I waited I woke with bad headaches which lasted all day, and went to sleep still having a headache. Over the counter NSAIDs barely reduced the pain.
I got the brain MRI. The results said there was essentially nothing wrong.
6. 03/2022 - 07/2022 - During this time period the headaches just kept intensifying. They were made much worse if I reclined on the bed. By 3 or 4 in the morning I could no longer remain in bed. All day long the pain was barely tolerable. It started to increase in the evenings and by bedtime I could barely make myself go to sleep. I was only getting 3 to 4 hours of sleep each night during this time. I saw the opthalmologist who said that I need a lumbar puncture to rule out a certain diagnosis. For this I needed to see a neurologist. With the help of friends I found a neurologist willing to see me within a few weeks. She thought it was unlikely that I had the disorder the opthalmologist believed I might have but she ordered the lumbar puncture.
The lumbar puncture was performed. While I was on the table for that procedure I was told that the levels recorded were normal. Yet, the reduction in pressure gave me my first brief window of headache free existance in months. After the lumbar puncture, I developed a common complication of continued drainage of cerbrospinal fluid. I was confined to complete bed rest for two weeks. Unfortunately the brief window of headache free life vanished and I was again waking with headaches that lasted all day and only getting 3 - 4 hours of sleep. One more time I visited the opthalmologist, telling him that the normal lumbar puncture did not suggest the condition called Idiopathic Intracranial Hypertension (IIH). He said that sometimes things are not textbook. He asked if I would like to do a 'trial of medication' just to see if it helped me. I said yes.
7. 4th of July, 2022 - After two days taking a small amount of the medication there was the first sign that my headaches were resolving. That was July 4th, my personal independence day. I continued to take the medication and eventually discovered the correct dosage to completely resolve the headaches. Yay!
8. 07/2022 - 01/2023 - The headaches went away, but the fatigue did not. At first my issues were not that obvious. After all, I had just started to sleep more than 4 hours a night. Also, I had become accustomed to doing so little during all that horrible pain. I didn't notice the fatigue never lessened until I started doing more things. I feel normal upon awaking, but quickly my energy runs out. If I face a physical or mental challenge, or if I am stressed, the fatigue is compounded.
I am eating healthy. I am doing recuperative exercise. I am pushing myself to do as much as possible each day. The fatigue when it hits, hits hard and stops me in my tracks. More blood tests and MRIs have been done. They show essentially normal results. The neurologist doubts the opthalmologist is accurate in his assessment but cannot explain why the medication resolved my headaches. Currently there is no diagnosis for my continued fatigue symptoms. I am getting tired of all the tests when the results never show a clear answer.
It is frustrating having been such a physically active person to have to accept the limitations on my physical abilities. I am happy that writing is still an outlet for me and that I can pursue this even if I can no longer teach exercise classes.
I persist in seeking health. I research. I do healthy things.
I hold a space in my mind and heart and soul that knows I can overcome this.
I wish you all the best,
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