So, I’m home from my trip from FL with my sister.. It wasn’t too bad driving down. It was short days & I got to nap in the car. She did most of the driving. I dunno if she trusts my driving. Lol!
I had a blast! I thrive in the summer here in Canada and the average temperature was about 30°C.. so about 90°F or warmer some days.. So, I did really well, considering..
Lots of time laying in the sun relaxing.. getting tons of Vitamin D.. Only one sunburn on our first day down at the beach . Kept hydrated.
Did a day of shopping . “day” = 2.5 hrs including the ½ hour break.
Did Disney, Hollywood Studios.. Which is actually a fairly small amusement park for a major park.. Was way smaller than what I remember Canada’s Wonderland to be.. Did 4 rides, 4-5 shows, met Chewy, checked out alot cool Star Wars stuff.. Was awesome..
Sisters on the Loose @ Disney
Chilled the next day & went out for dinner theatre which was cool..
Dinner out the next night, with some provision & souvenir shopping.
So, not a huge amount of stuff, so I didn’t over do it.. But admittedly I was a little extra medicated all week, tho I don’t think my sister knew.
Hardest part was coming home.. 30° gorgeous & sunny in FL when I got on the plane, 7° overcast & rainy at Pearson in Toronto..
Last year was my 50th birthday. To celebrate that milestone, my sister & I are going on a road trip. My sister is covering food & accommodation and M&D are covering the flight back & various incidentals..
Sisters’ Road Trip!
So, this Thursday, we are leaving in the evening, after rush hour to go through Toronto and around Buffalo for our first leg..Leaving first thing (God help me) the next morning, we are trading off driving duties all the way to Berkley WV.. About 450 miles, just over 700 km.. then to Jacksonville FL the next day, another 600 miles, about 950 km. On Sunday, we’ll go to our final destination just south of Orlando.
What am I doing to cope? A few things actually, but firstly, ya gotta know, I really enjoy driving.
I have pillows, my blanket & Obus Form backrest in the car with me for comfort. We are also in an SUV, so lots of room.
I *can* nap in the car. Last mini road trip was to Ottawa and I slept for 3 of the 4 & change hours.
Frequent breaks – Every truck stop, even if it’s just to take a quick walk around the parking lot
Lots of fluids. Bringing water & Gatorade. Will be bringing Mio & Koolaid to change up the flavours
Snacks. Will have a little bit of everything to nibble on.. Honestly, the same stuff I’d have my cub scouts take on a hike. Protein like nuts & seeds, maybe some hard-boiled eggs premade jerky. Carbs like chex mix, pretzels, cheerios. Sugars: slower ones like dried fruits (premade cuz I can’t make it then bring it across the border) like apples, strawberries, mango or banana and faster ones like M&M’s or Smarties (Another kind of Canadian M&M type candy)
Rest at the hotels once we check in at the end of the days.
Hot Tubs. At least, I hope. I know the first one doesn’t have one, but the second 2 do. But I dunno when they close for the night or what time we will get to each location. If not, hot showers.
Comfy clothing. I have bought a new pain of lightweight cotton leggings to start my trip down & for my trip back.. Also have comfy shorts & clothing to wear. Absolutely nothing constructive. Also throwing in a spare pair of ok pants it case I need something even more relaxed fit!
Will be bringing sleep meds with me to take overnight to help me sleep.
Extra meds. I’ll be taking Robax down with me. While as I understand that muscle relaxants in the US require a prescription, I don’t give a flying f. I’ll also take extra T1s & T3s in addition to the prescription Muscle relaxant as well.. I’ll also have a tube of A535.
In reference to concerns about me driving on these medications. I take Tylenol 3s on a regular basis as well as the Rx muscle relaxant. My body is used to these medications. I do not get a high not am I impaired by them. Only time I *ever* got a reaction from T3s was when I also still had anesthesia in my system and no I did not drive then – lol. You also have to realize, I have functioned on 50mcg/h of Fentanyl, a patch with no detriment including driving.
If any of y’all have further suggestions, I’d love to hear them!
More details of the plan in FL coming. Wish me luck!!
I recently watched Blade Runner.. I know, completely off topic..
So, it was the original, starring Harrison Ford. It was filmed in 1982 and set in November 2019.. They had an interesting and incorrect perception of what the world would be like..
They thought in 40 years that we would have Flying cars. With the driving skills of today’s drivers, I shudder at the thought. I did notice that most of the cars are very similar to Deloreans which ceased being made the year after this movie was released.
This movie not only had smoking as a commonplace activity, but specifically smoking inside. Here in Ontario , the law banning smoking in indoor public spaces was passed in 1994 & further expanded in 2006. These were put into place long before the movie was set to take place.
Advertising included building high billboards. While not commonplace they do exist. Yonge-Dundas Squate (sorry, Sankofa Square) in Downtown Toronto is an example. However, the billboard blimps in this movie are not something we have and they do not look like the Goodyear blimp.
We were expected to be living ‘off-world’. Considering we haven’t been to the Moon since 1972, it’s a little unrealistic, even then. Also the International Space Station didn’t even get started being built until 1998, over 15 after this movie was released
The technology was inconsistent. They had robots with full AI, which we are just getting into. Yet the actual computers are garbage with low resolution monitors. Cellular devices and personal phones were not a thing. We couldn’t live these days without our phones. They did have public telephones, something that is rare these days. But they had video calling.. Talk about inconsistent! Lol
The architecture is just way out there.
Photographs, which are becoming more & more scarce, were in the movie. These instant cameras were similar to polaroids. While polaroid cameras do still exist, I haven seen one in the flesh, so to speak, in decades.
I found the Atari ad placement funny tho.. Oddly enough, it’s still around and Atari is allegedly still making games for that system..
Please take into consideration that while I do exercise, my functionality & strength levels are much lower than the average person, so while I am participating in these activities, I am not doing so at the level of a “normal” or “healthy” person.
Please also keep in mind that this is not an exact schedule. The only activities that are almost guaranteed are Cub Scouts & walking on Thursdays. I also frequently do not have much in the way of other activities as to do so would either exhaust me or send me into a flare. Sometimes I get exhausted or flare anyway.
Monday: I try to get to the gym for a walk & weights
Tuesday: Cub Scouts
Wednesday: I try to get to the gym for arriba for cardio, followed by a short walk & weights
Thursday: Walking with my sister and the pups. If she is not available, I do have another friend or two I can call.
Friday: I try to get to the gym for a walk & weights
Saturday: Usually a social day. No regular exercise scheduled.
Sunday: Recreational soccer.
Additionally, if I cannot sleep & am restless, I will hop on my Mom’s treadmill and pace out a quarter mile in 5-6 minutes. This exhausts the muscles which can help me sleep.
My current daily Fitbit step goal is 7000. This is a goal, not a consistent step count. The default that Fitbit sets up the average person at 10k. When I got my Fitbit from my niece, I immediately lowered it to 8k then further to 6k. I upped it about a year ago to 6.5k and just recently to 7k Yes there are days when I do more, not typically much more and days commonly that I do less. There have been a few instances of 20k+. But as I said, a few, in two years and I have paid for those days. There are also days where I only do 1k+.
Last fall, my sleep took a huge dive. I have a Fitbit, so I can monitor the duration & quality of my sleep in addition to my actual schedule.
Summer time
Average duration: 8-8:30 hours
Average sleep score: 82, 0 days no readings (<3hours)
Typical sleep schedule: 2am-10:30-11am
September
Average duration: 6:24hr
Average sleep score: 70, 1d no reading
Typical sleep schedule: 2-2:30am-10:30am
Hours of sleep at cub camp: <5 for the weekend
October
Average duration: 6:36hr
Average sleep score: 72, 1d no readings
Typical sleep schedule: started at 1:30am-10:30am, but shifted to 3am-1pm
November
Average Duration: 6:27hr
Average Sleep Score: 72, 1d no readings
Typical sleep schedule: 3am-1-2pm
December
Average Duration: 5 hr
Average Sleep Score: 70, 4d no readings
Typical Sleep Schedule: There wasn’t one. I could be asleep any time between 11pm- 8pm
January
Average Duration: 6:30hr
Average Sleep Score: 72, 2d no readings
Typical Sleep Schedule: 3am-1-2p
February
Average Duration: 6:52hr
Average Sleep Score: 76, 0d no readings
Typical Sleep Schedule: 2:30am-12-1pm
Hours of sleep at cub camp: <8 for the weekend
March
Average Duration: 6:11hr
Average Sleep Score: 73, 2d no readings
Typical Sleep Schedule: 2am-4am – 1-3am
Items to Note:
December sucked. I fell asleep at both Christmas’ dinners. Also worst sleep durations, score, and schedule with 4d of insufficient sleep.
While I am in bed for 10-12 hours, I get 6 & change hours of sleep. I’m actually asleep less than 60% of the time I’m in bed. That does not include time spent reading & such prior to bed.
I get to bed between 2:30 & 5am (not typical, but there are several days of this lately) and I need to shift my schedule to get the bed earlier & wake earlier.
Synopsis: My sleep sucks in the winter & at worst at Christmas.
Now that I stopped the Resulti, I am no longer eating obsessively. However, despite better eating habits and resuming activities (was injured for a few months), I have found it very difficult to lose weight. I am still hovering at the 40-50lb weight gain.
This really sucks. If anyone has any suggestions I am open to hearing from you. See my next post about my exercise.
Yes, I am rehashing from an old post but I’ve added alot more to it.
March is Endometriosis Awareness Month
March is Endometriosis Awareness Month
What is Endometriosis? In layman’s terms, it’s when the cells the are supposed to live in the uterus also live outside the uterus.
What does that mean? Well, it means those misplaced cells act like they would it they were in the right place. They have the menstrual cycle, but it can be on the bowel, on the outside of the fallopian tubes, uterus, ovaries, etc, on the rectum, on the bladder, on the kidneys, basically any of the organs in the abdomen. But not only that, these cell can migrate anywhere within the body. This includes more serious, but rare places like the heart, lungs, the spine, and the brain.
What does it feel like?It hurts!! Most women have a regular menstrual cycle. Some women have bad cramps and heavy bleeding. Us with Endo have horrible cramping, debilitating pain that last the duration of the cycle & for up to a week prior & after, and those cycles are irregular & erratic – some times lasting up to 2 weeks, sometimes with only a week, or days, in between. And remember, this happens in those cells that have meandered into the rest of the body, so not all the pain is necessarily in the lower abdomen.
Completely debilitating cramps
How does it differ from regular period pain? Lately there’s been pain simulator videos on the web by somedays.com. They use a tens machine to simulate period pain. Average period pain is 5-7. Endometriosis pain is usually a 9-10. Now, this is not a pain scale of 1-10 but the settings on the machine. Here’s one such video of a US State trooper. He says he’d call in to work sick at 6, but made it to a 10. Here is a vid of some young health professional dancers. I love the expressions these guys make. One tapped out completely at 6, but the other two did make it to 10 – barely.
What else can happen? In addition to debilitating abdominal pain, there can be issues with infertility. Studies have shown that 30-50% of women experience fertility issues be it the inability to conceive, high risk of miscarriage or just the fact that for some it can really f*”kin hurt to engage in sexual activity .With tissues not being where they are supposed to be, the women’s reproductive system is turned into a war zone. Cuz the tissues are not where they are supposed to be, internal and things very easily get rubbed the wrong way. Add to that the common co-morbidity with Irritable bowel syndrome ,which in and of itself sucks, and other digestive issues. Other symptoms can include painful urination, blood clots, bloating & water retention, shortness of breath, fatigue, depression, mood swings, leg cramps, and other general body wide pain.
What if I think I have Endometriosis? Stand your ground with your doctor. Do not let him/her/they brush off your symptoms. A GP is not equipped or trained sufficiently to make this diagnosis. Typically, they try a birth control pill or two or three, or the patch and for some that will help sufficiently. But if it doesn’t, get a referral to a gynaecologist. Again stand your ground. If you believe you have endometriosis and medicinal treatments like lupron and Depo-Provera don’t help. Push for a laparoscope if you can afford it.My Gyn did not believe I had Endo, but when I pushed for my lap, she found it all across my abdomen, so much so that she didn’t have long enough tools to excise it all. Advocating strongly for yourself will significantly reduce your time to diagnosis. From the time I first started having pain in my teens to diagnosis was about 10 years, a typical duration.
It seems I’m in the minority when I say my fibro is better in the hot weather. I will sweat up a storm, but I can function so much better in the summer. Conversely, I can’t tolerate cold well and even require extra medical treatment in the winter months. So these tip aren’t for me, but everyone else! Lol!
Tips for Chronic Pain Sufferers During Hot Weather
Drink more water than you think you need to before going out into the heat. Hydration is extremely important. When you become dehydrated, your chronic pain condition can flare, and headaches that occur with dehydration are extremely common. Most of the time, if you feel thirsty, you’ve waited too long to have something to drink. Make sure you have plenty of water with you wherever you are in the summer. Taking small sips on a frequent basis will help mitigate dehydration.
Think about where you will sit. Activities in the summer months often involve seating that is not particularly comfortable for the body, such as bleachers at a ball game, picnic tables, or the hard ground at the park. Keep a lightweight, easy to carry, and simple to set up chair in your car so you always have it if you need it. While any seat may be better than standing or sitting on the ground, try to find one that will be comfortable for you so you won’t make conditions, such as back pain, any worse.
Spend time where you can stay cool — the water. The happy place for many people with chronic pain during summer is the water. Swimming or even just very easy stretching and movement in the water can be a wonderful respite. Preventing your skin and your body from becoming overheated will go a long way in preventing pain or flare ups. Consider taking cool showers if you do not have access to a pool or other swimming area.
Stay inside to avoid extreme heat when you can and take proper precautions. The common advice for avoiding sun damage applies for chronic pain — stay indoors, preferably air conditioned environments, during the hottest parts of the day, seek shade, wear protective but loose fitting clothing, and apply sunscreen regularly. Plan to be outside during the early morning or late evening, and take a handheld fan with you wherever you go for a little bit of cooling power.
Keep an eye on air quality. During the summer, it is especially important to pay close attention to air quality ratings before heading outdoors. Evidence has shown that urban air pollution can increase inflammation, particularly for people diagnosed with fibromyalgia, chronic pain syndrome, and multiple sclerosis. If air quality is an issue, it may be best to cancel plans for being outside.
Boost your immune system with fresh summer foods. Keeping to an anti-inflammatory diet during the summer should be easy with so many fresh fruits and vegetables available. Enjoy the delicious fresh produce while boosting your body’s reserves of vitamins, minerals, antioxidants, and more. Cherries are a great example of a summer fruit that can have positive effects for those with chronic pain. The USDA found that cherries contain pain-fighting and inflammation-reducing compounds that can help lessen pain, particularly arthritis.
I started talking to a new fellow in October, and started seeing each other in late February. So he’s really only seen my Rexulti appetite.
Last weekend, for Canada Day I went over for pool, dinner & fireworks.
I grabbed breakfast on my way to his place. He was surprised that I had waited so long to finally eat cuz it was early afternoon. On the Rexulti, I was downing at least one full bowl of cereal the second I woke up, if not more. But now, I don’t have this passion, obsession, cumplusion to always eat.
He offered me snacks back at his place which I surprised him by declining. While dinner was cooking, he offered me nachos for a quick snack which the chicken was in the oven. He ended up making a small plate for himself & yes I had two chips. But I didn’t have a whole plate to myself like I have previously done. He was surprised I declined & then only had such a small amount.
For dinner, I was full after the salad & chicken. Previously I’d have been able to, and have gone back for seconds & thirds.
Afterwards, he offered cookies for dessert to which I agreed. I shocked the heck out of him by grabbing one cookie and eating one cookie, then *not* reach in for a second or third. He just looked at me & jokingly went to check my temperature on my forehead, saying “Are you feeling ok?” I laughed & said that my appetite has just snapped back & reply.. “Uh – Yeah!”
His thoroughly surprised response tells me he definately saw a massive shift in my eating habits. The last time he had made dinner, has been 3 weeks prior – before I stopped the medication.
This just adds more to my case that the problem with my weight was a direct result on the medication Rexulti.
Fibromyalgia 
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