Me & my speech.

Because of all the medical variables with Whoops Disease, it’s really easy for doctors to assume other problems and issues. AND if you’re not keeping an accurate record for yourself, it means that you like me could be suffering believing the doctors know what they are talking about. BUT after you start making your own records, don’t expect the doctors to believe you, they will base their estimations on their assumptions and previous records.

So keep your Own Records to Assist you In Protecting Your Health

There are many aspects to this work. Including:

  • Medicine Records,
  • Natural treatment records,
  • Fluid consumption records,
  • Pee records,
  • Calorie records, with other variables as desired OR needed,
  • Personal Mood/Feeling Records
  • Temperature & Fever Issues
  • Yelling & Screaming Issues

Medicine Record Variations from Normal

Rhapsodie from 2013 into 2014 didn’t take the Thyroid medication. After taking it again in 2015 the prescription from before was kept EXACTLY the same, there were no medicine changes and Rhapsodie is taking the EXACT same amount now. This is a sign of the Whoops Disease, with the exact prescription maximized by non-users previous to problem of 1.25 for females not taking depression medications. Also for females previously taking thyroid medications the amounts only go up OR down to 2.5 not anymore OR any less. After treatment this should normalize, but I’m not sure at what speed.

Fluid intake Records & Pee Records

The great intake of water to keep up the needs of the body, for Rhapsodie a proven 1.25 to 1.5 gallons of fluid daily, reduce the size of the stomach’s intake of food, this when fluid intake is good to keep the body moisture levels accurate, so no inaccuracies in blood tests BUT the results have similar aspects to some starvation issues Rhapsodie lived. This also means that others need to keep track of their eating and amounts of that with Whoops Disease. While drinking fluids like water often add a fullness to a stomach, with Whoops Disease they are filling and nothing else seems to be wanted.

Pee amounts aren’t done all the time, just using an empty gallon jug a couple of times has proven I’m peeing only about ½ of what I’m drinking. BUT fluids go out in other ways also. But this also varies with types of fluids, types of activities and durations, types of environments, types of moods/events/and other impact actions and stresses for the body, and variations in aspects of environment like humidity. When I have a sweating low with my sugar I can lose enough water to soak my mattress, or at least my sheets.

Calorie Intake Records

I’ve suffered from not consuming enough, and the calorie intake measured from 2013 to 2015 went up from around 900 calories a day to almost 1,250…those years of starvation previous to my calorie measures were super bad. During the timeframe of my starvation broken bones happened, which has meant that the doctors should have found the injuries, but being stress fractures, inaccurate X-ray reading, Whoops Disease water beneath the skin, inaccurate BMI weight assessments instead of accurate body composition measures, and bad communication additional problems have grown. This includes issues from limited abilities to exercise, needs for pain fighters and avoiding the narcotics doctors ignorantly keep prescribing. The starvation notes by Rhapsodie are kept in her MEDICAL folders.

Keeping a record of calorie intake isn’t hard to do, BUT I also try to make sure to have balanced diet as a norm. This has meant preparing all my hot drinks with whole milk, so I get enough calories of protein and fat daily while still getting all the fluids Whoops causes me to want. The daily list helps me to continue to consume at least 3 servings of fruits and veggies daily, even though they take a lot of stomach space, digestion time, and leave me to full to consume many other calories. BUT they are full of fiber if veggies and are way healthier than other foods.

The calorie papers I have kept get put into my 2012- 2021 Food Calories of Rhapsodie Excel spreadsheet which is prepared to take the daily counts and average those by amounts per week, month, 4 months, and year as daily amounts. So when I tell you that my recent average per day is up to 1611 calories per day, the number is from the 4 month daily average. This means it’s a running calorie average, not a day of amount OR a week of  average OR a month of amounts. For 2020 my daily average of calories came to 1570 calories per day. This is in no way a way to be fat, and while I’m not starving anymore, the fractured bones are still suffering the times of starvation.

For others this means taking care to make sure to keep accurate food consumption records in order to avoid starvation and issues that can result from that.

Symptom & Treatment Records

I’ve tried to add the symptoms and treatments used by me here in this blog, but I’m sure that more is happening with other people because more has happened with my mom, my dad, and my husband. This means various life actions as well as ages and sexes can shift the symptoms in various ways. Types of treatment through this blog are mostly natural, BUT I’ve also been having the issues with the broken bones. My treatments have gone way more natural because of multitudes of reasons as well as many useful options available for me AND for you…

Personal Mood/Feeling Records

Our health issues and our times in life impact our feelings and moods. So does the weather, our comfort, and the aspects of life that bother us and help us feel better. Understanding ourselves and our tolerance for problems and issues as well as our willingness to care for others and ways to do so through issues is a big help for all of us. In addition with Whoops Disease patterns could be located that can assist health care people AND our families to understand more about what we may be having issues with when. Some of this is impacted by sugar levels, temperature & fever issues, fluid intake aspects, bathing aspects, sleep aspects, and also medicines we may be taking OR on.

  • For me, Rhapsodie, high sugar makes me feel stretched out of my skin, all my limbs feel slightly, only slightly tight. Also I desire food and drink way more than when my sugar is normal or low, at least with Whoops.
  • Temperature & Fever Issues, like every 3 to 6 days, now, I have a temperature cycle from high to chill…This has been going on for the last three years, BUT it’s getting more and more frequent. When my temp is high I’m super thirsty, and I’m also less patient with others around me. In addition the higher temperatures seem to go away when I sleep AND reappear only when I’m awake.
  • Fluid is necessary with Whoops, tremendous amounts of it, if my sugar is higher I try to drink only clear fluids, but the milky tea is the only thing that soothes my throat when it hurts without additional medications.
  • I’m so much more calm and relaxed if I can get a good soak, 4-8 hours once a week. That hasn’t happened for months because of hot water issues, so I’m also not sleeping as well which also adds to harsher and less patient moods. Which sometimes end up in frustration and meanness towards the air around me.
  • For me, I generally sleep when I’m tired enough not to stay awake if I’m in the middle of something. BUT if I’m not involved in something, I may sleep and go back to sleep, because sleep is super important.
    • My tiredness is huge with the injuries, the first day after fracturing my right calf I conked out for 13 hours straight. That week I missed a day of classes, and did no homework that weekend for the first time since college began…for months I suffered lots of sleeping and very little energy. I didn’t work a single day that year of classes, not like the previous years and I had a lot fewer than the previous years also. I was just too tired all of the time. I struggled to get projects & papers done repeatedly and it was my senior year in college. It would have helped if I’d realized the injury then, I never remembered the cracking break sound till the summer of 2014 after the fracture in the fall of 2013, which remains undiagnosed to this day.
  • Medicines & more we take can alter moods tremendously.
    • Gabapentin was a pain killer I stopped taking after 4 days…it made me tired, moody, mean, grumpy, and super gassy.
    • Kava Kava, is a mood calmer.
    • Humalog insulin also calmed my mood versus the beef & pork insulin taken previously.
    • Fluoride is also a mood calmer.
  • Mood boosters
    • Sunshine, good old fun days in the sun with the vitamin D can really pick up a person, only 15 minutes a day is needed for enough D to be enough for the whole day.
    • Adrenalin, which comes from exercise, also improves moods, adds ‘pepp’ to the step, and helps people feel ‘a bit sunnier’.

Temperature & Fever Issues

With higher temperatures my skin and body, mostly face, throat, and neck feel like 10 times hotter and more stretched than with high sugar. The oddity about the Whoops fevers is that they seem to work their way up. Starting in the thighs through the head, and finally ending nearer the top of the head with a headache days OR hours later depending on the time frame of the pattern. Unlike being sick fevers that run from the toes to the head, the Whoops fevers seem more upper body for me.

Normal temperature feelings are like abnormal for me now, but I’ve had a couple of days this last year when I’m just feeling ‘good’, and with checking my temperature I’m at 97.7 OR 97.8, right almost at my normal temperatures of 97.6 to 97.7 which have been normal since about 5 years of age. I run a lower than normal average, so does my dad, grandma, aunts, and maybe also my uncle…it seems to be a family trait.

Yelling & Screaming Issues

My ‘days of yells’ upsets are mostly Fridays and Saturdays every 2 weeks, my husbands are every Saturday and Sunday every 3 weeks. While spread a bit they are still issues for all of us because we are usually yelling toward each other unless we recognize the pattern and yell to the air as much as possible.

Keeping our own records can really help us help ourselves and others we spend time with if we also note that we have Whoops disease. What I’ve found with all these issues is that my patterns are weirdly ‘ordered’.

Other Connecting Posts

Diabetic’s and Treatments

Whoops Disease Info

Additional Connecting Information

Rhapsodie has written about these issues for multiple reasons:

1) To have a shared written record, that’s useful. 2) To provide info to others to assist them in planning to deal with the horrid medical system of the U.S. 3) To hopefully impact doctors & health carers to do more work than just using reports which may be false.

Pain ASSessment Inaccuracies & Health Issues

Rhapsodie’s Visual PAIN Diary- From September 2013 into April 2017

 Rhapsodie’s ideas to improve Medical ASSESSMENTS by doctors

PAIN Variables

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