History

My history

Overdue Health Update – June 2022

Posted by ARadioGurl on June 21, 2022
Posted in: Daily Life, FMS, History. Tagged: , , .

Roller-coaster of a few years since my last blog update. Had a new roof put on my house in early 2021, had to get surgery for my dog’s right rear leg in 2020, and have been busy tinkering on my VW bus, the Benz, vintage computers, and antique radios. Health-wise I found a new set of doctors in early 2020, before the pandemic begun. I had hoped for a quick recovery from a number of issues, but it’s been a slow recovery and at times a fight.

I have severe allergies, very severe, far worse than I believed. Years of them being untreated have turned them into a primary flareup trigger and a source of migraines. After a year and one half of working with my primary to make sure my bloodwork was healthy (no more anemia or vitamin D issues, yay!) and experimenting with various allergy meds, I sought out a sinus/allergy specialist, started allergy treatment a month after my first appointment, sinus surgery a couple months later. Before beginning treatment I was seeing upwards of 25 migraine days a month, seeing relief only a couple of times a year, which coincide with low pollen/allergen months.

I saw major improvements after the sinus surgery, immediately I could breath better than I have in years, then, as the weeks went one I noticed less migraines, less flareups, less attacks. The allergy immunosuppression treatment itself is rough on me, causes my sinuses to become inflamed and, when allergens are high, sick, weak, foggy. I’m still early in the treatment, but I’ve seen a lot of improvements and overall feeling better. I should see significant improvements over the following year, especially once other health issues are resolved.

Due to the immunosuppression treatment I put house and fleet repairs on hold. Being sick for 5-6 days a week took up the time I was spending working on repairs and maintenance. Stopped working outside when I couldn’t be outside for more than 10 minutes before headaches would begin and lymph nodes would swell, going out to the garage caused similar issues, then I noticed that drywall dust was making me extremely sick. I can mostly handling being outside now, the garage itself doesn’t both me as long as I’m not out in it all day, but it may be some months before I can handle drywall dust again.

I’m fighting an infection, have been for years. Heat makes it flareup, painfully, but it would often turn dormant, sometimes for months, usually weeks at a time, making it hard to find the right treatment. Many treatments would turn it dormant, some worsened it, but eventually one that worked was found. There are side effects, heat sensitivity, headaches, exhaustion, chills, they come and go, but overall they are lessening as the infection clears up. No clue how long before it’s completely clear, but it’s been a long battle.

Things are rough right now, this past year has been rough, but improving week by week. The infection should continue to clear up over the following months, and I should see significant improvements with my allergies. Partner has been helping with a lot of the yard work and house maintenance, but I’m really looking forward to when I can go outside and not worry about headaches or the infection flaring up. Anemia is under control, vitamin deficiencies are under control, bloodwork is looking great, I’m ready to move on.

Summer 2019 Update

Posted by ARadioGurl on July 16, 2019
Posted in: Daily Life, History. Tagged: , . Leave a Comment

Anemia is still hell, but I have come a long way in my recovery. The summer heat is hard on me and physical activity will wear me down, but my recovery is much quicker and I am able to exercise. My career and personal life take up what little free time I have. I often forego going out to shows or events, so that I can properly rest up for work. I will choose to stay in entire weekends if I know I have a busy Monday coming up, but unlike last year, I can keep up with yard work and cleaning.

Outside of my health issues I have been finishing up work on my VW bus. In February I added AC (installed myself using a Gilmore enterprises kit), then in March I installed cruise control, a new steering wheel, rebuilt steering box, and an awning. I have put around 5,000 miles since I put it on the road April last year. The bus has gone on two trips from Florida’s Space Coast up to Asheville, NC. One month I did weekly trips down to South Florida to clear out my storage unit, 280 miles each trip. Still need to finish the kitchenette, the roof rack, and solar setup.

Now that the bus is a capable daily driver, I’ve been able to resume other projects, mostly focusing on my house, but also my computer and antique radio collections. The home got new AC last year, this year it’s been going through a deep clean, next up is a new roof. I cleaned out my storage unit and now have all of my vintage computers and antique radios. Still cleaning and organizing my stuff from storage, but I have my electronics bench setup and have done some vintage computer repairs and recently began work on some of my radios.

It’s nice getting back into the routine of things. Even though the fatigue and pain get bad at times, even though I have to stop to rest and force myself not to do things, I’m accomplishing more than I have in nearly two years. I may have to pause things for hours, days, sometimes even weeks or months, but I’m able to resume and accomplish. Maybe I’ll start updating my blog more often, but no promises.

Hurricanes Do Not Agree with Fibro – Irma and the Aftermath

Posted by ARadioGurl on April 4, 2018
Posted in: Daily Life, FMS, History, Uncategorized. Tagged: , , . Leave a Comment

Originally written back in November 2017, then never posted due to me getting sick.

 

As a Florida resident I have to keep an eye on potential hurricanes. Tropical storms have never been an issue, unless I need to drive through flooded roads, but hurricanes I don’t mess with. In the twenty years I’ve been in Florida I’ve seen quite a few cat 1, 2, and 3 hurricanes. I’ve had giant old trees fall yards from the house I was staying in, and see roofs ripped off buildings where I have worked. Hurricanes are stressful and post cleanup can be exhaustive, not a good combo when one has Fibromyalgia. While my thirty years old home is in a good location, on a good grid and my street has never flooded, none of that helped during Irma.

Hurricane Irma came through and it was not as severe as it was expected to be, but the local utilities haven’t been maintaining their lines. Before I moved to South Florida the utility lines were always kept clear, after moving back I discovered massive overgrowth across the entire grid. Two months ago I had the power company out to see about doing line clearings, it was scheduled for the end of September, but because of the hurricane they still haven’t done the clearing. Luckily during Irma the overgrowth didn’t damage the lines around my house, but did damage the lines further back in the grid. The power line damage from overgrowth caused us to be without power from before the hurricane hit us through the entire week.

The house itself took no damage during Irma, front yard looked untouched, yet the backyard looked like a tornado went through it. Trees and bushes in the backyard were all pushed westward, branches twisted around branches. My orchid tree took the most damage from the wind, it looks like half a tree now that all the leaves and branches are on one side of it. My lemon tree took almost no damage, although we lost most of the lemons. Most homes in the neighborhood had little to no damage, but there was plenty of yard cleanup.

First day after the hurricane was bearable. Without electricity we had no AC, but the weather had not warmed back up. It was fairly easy to start on limited cleanup and it seemed like I was going to be in good shape. On the second day the Florida summer heat returned, along with mosquitos. We had a tiny generator to keep our fridge running and a fan on us, even still the late afternoon left us overheated and exhausted. Thankfully I kept my Quell unit charged, so while the fatigue grew, the pain was kept managed.

The hurricane hit us on a Sunday night, power was restored to us Friday afternoon. I was struggling to function at this point, having slept only a few hours each night. When power came on, and stayed on, that gave me an adrenaline rush that allowed me put the well system back online, but not much more than that. Over the next few days I struggled to sleep, then struggled to stay awake. I managed to take the plywood off the windows, one window a day.

After that, it took over a month for me to recover. I struggled with sleep over the following weeks, each week sleep improving by a tiny bit. Each day I felt extremely drained, heavily foggy, struggling to do the most basic of chores. I could mostly keep up with work, but at the expense of house chores and personal projects. I flared up bad and was in a flareup for most of October. The flare would occasionally become extreme and my immune system was weak. Got sick a few too many times over the past month. Now it is early November and I’m starting to feel more like myself. I’m able to keep up with my chores and have resume work on my projects. I have good days and I have bad days, but the good days are starting to outnumber the bad days again.

Sleep is so important to manage fibro, the entire body weakens without enough of it. It was a hard recovery, something I hope to not have to go through again. If we get hit with another hurricane I have a nice generator ready to keep a couple of window units running.

 

Fibro and Summer Heat

Posted by ARadioGurl on May 8, 2017
Posted in: Daily Life, FMS, History. Tagged: , , , . Leave a Comment

Note: Brain fog is an issue today, grammar may suffer.

The Florida summer is finally coming upon us here on the Space Coast. The summer used to not bother me, overall I enjoy the warmth and extra sunlight, but these days the heat will easily exhaust me. Sometimes I end up dehydrated as I am terrible at maintaining hydration in the heat. Other times the heat makes me sick, triggering overbearing headaches, muscle weakness, and exhaustion. I have experienced heat sickness and dehydration periodically growing up in New England and only occasionally in my twenties living in Florida. Since the fibromyalgia became strong in my early 30s I’ve experience this heat sickness regularly.

While I was in my mid-twenties I purchased a home in an area many of my friends refer to as ‘the middle of nowhere’ in Florida’s Space Coast. Where the house is there are only a handful of other homes. Most of the lots are undeveloped with extremely tall pine trees interspersed with palms and well maintained 3 or 4 bedroom homes. It’s a nice quiet place to live, 10-15 minutes from most stores and the highway, about 30 minutes from downtown Melbourne, Fl. Having a quarter acre lot I proceeded to start adding gardens around the house and throughout the backyard. I would spend most of the day outside working on the gardens and house. Back then I could hop on my bicycle and knock out 15 miles in the middle of July, with only a rare flareup of exhaustion the next day.

When the fibro started to get strong I wasn’t able to do the physical labor of gardening, struggling to do the minimum maintenance. Many gardens died out and returned to grass, but I kept the largest most established gardens looking decent. Not only was the physical labor becoming difficult, but I was losing my heat tolerance, often becoming sick when outside. At the worst I would start to suffer heat sickness from standing outside too long. At one point I was on medication that made me highly prone to dehydration, thankfully that has since changed, but bad habits still lead me to occasional dehydration.

Hydration is super important, but I learned bad hydration habits growing up. I worked summers and most weekends helping my parents with their rental properties. While we would bring water with us, there were many times where we could only drink the water after we were done with our work. Same thing in school, you were only allowed water when they said you could drink. You learn to ignore the thirst, instead relying on the watch to tell you when you can hydrate, it is a very bad habit and hard to break.

Earlier this past week I was up on the roof trying to patch my skylights, I’m fairly sure the one above my kitchen is the reason for the bad roof leak(s). For the first half hour I was fine, but towards the end of the job the heat started to get to me, I was overheating badly. I was able to finish the work, get off the roof, grab a gatorade and lay down with the ice pack to help me cool off. I recovered from that by the next morning.

Come Sunday afternoon and a friend is borrowing my garage to do an oil change. I decide to work on the bus for the hour or so we’re outside. I go in and out of the afternoon sun many times, each time leaving me feeling a bit warmer than the last. Eventually I’m moving bus parts around and realize that I can no longer lift a door. Just minutes earlier I was able to lift the door without struggle, but now my leg muscles are starting to hurt as is my head. I struggle to put my work away, my friends are finishing their work. That’s when the dizziness starts to hit, I excuse myself and go inside to lay down with an ice pack. I made one big mistake that afternoon, I drank very little water or other hydrating beverages. Usually I’ll bounce back once i rehydrate.

I felt terrible for hours and even though I was rehydrating, my muscles were aching. I figured that I needed sleep and would be okay the next day. I’ve spent quite a few hot days outside working in the sun and heat, sometimes I’m fine, sometimes I get sick. I can be stuck in traffic in a car with weak AC and overheat, triggering a flareup. I can spend the entire day working on the yard and be fine, then the next week I will barely last two hours. Sometimes the fibro feels like rolling dice, you never know what you’re going to get on your next throw.

I woke up this morning feeling worse than when I went to bed, woke in a full fibro flareup. This is not normal for me, it may be the most severe reaction to overheating I’ve experienced, but nothing about living with fibro is normal. It was hard to move this morning, random pain sometimes triggered by movement, muscle weakness returned along with lots of stiffness. My wrists and hands ache, are stiff, and feel inflamed. My shoulders, arms, and legs are in a lot of pain. To add to it, I’m highly foggy, I lose track of what I’m typing easily and forget words. Luckily bad brain fog like this is rare and should be gone by tomorrow. I ended up having to take the day off from work so that I can recover. My day will be full of turmeric and ice packs, along with gentle yoga and stretches for the achy muscles.

Tech Break and The Bus Project

Posted by ARadioGurl on May 7, 2017
Posted in: Daily Life, History, Uncategorized. Tagged: , , , . Leave a Comment

Note: This was originally drafted in late April, 2017

I took a short break from my normal use of technology in March. It was a nice change as I’m often on the computer after work and the weekends. Unless I’m doing house or car repairs, I’m usually I’m studying new concepts, doing research, updating my Gentoo desktop, tinkering with one of my SBCs, or working on one of my personal projects. More recently I have gotten back into automotive work. Besides usual maintenance on my Audi, I’ve been working on putting my 1962 Impala back on the road, plus it was time to put my 1973 VW Westy camper bus back together.

Long before the fibromyalgia affected my life I was a very active person with multiple active projects. Late summer of 2006 a friend and I bought this rusty bus from a dude in Orlando, saving it before it went to scrap. We talked a lot about what we would do with the bus, cleaned it out a bit and tinkered on it. It had no engine, scary looking electrical, but was solid. A few years later I became sole owner of the bus and decided to take it apart. I wanted to teach myself auto restoration on it, then I could restore my Impala. At the time I was working on my masters degree and a very demanding job. It took a few years of very intermittent work for me to pull it apart with help from friends. During that time I obtained a couple of engines, a nice transmission, and various used parts, with the bus interior becoming furniture in the house.

I finished my masters degree and started work on the bus, just in time for me to experience bilateral carpel tunnel and guyon’s canal syndrome. I could barely use a keyboard much less lift a wrench. Months after surgery, in late 2011, I tried, but could barely work on the bus for 15 minutes before I would flare up. I gave up on the bus and focused on my newly acquired Benz. The Benz didn’t require the body and interior work I had planned for the bus.

In fall of 2013 I moved away and said bye to my bus, with the intention of handing the project over to someone interested in it. Life got in the way and the bus sat in the garage while the family renting my house became squatters. Fast forward to 2016, I end up moving back to my, discovering the bus and all its parts were left untouched; all I needed to do was body work and throw the bus back together.

It’s now 2017, late winter, and I need a break from Technology. The bus and all of its parts are taking up too much space, constantly getting it my way. It was time to start putting it back together. First thing was rust repair, which, because most of my body working tools, welder, and welding supplies were stolen, would mean rust removal with my die grinder and power drill, then fiberglass. While the fiberglass repairs were drying I started cleaning up and reassembling the interior, including stripping and refinishing all the wood panels. The more I worked on it, the more excited I became about it and the more work I found needed to be done. I’m dreading installing the electrical.

Now it’s April and I’m back to using computers. The bus I work on a few days a week, it’s coming along nicely. The break from tech was nice and recharging, I no longer feel burned out using computers after work. It also feels healthier to split my free time between house repairs, bus work, and computers. The house repairs are exhaustive and stressful, computers are my passion, but I’m on the computer 10+ hours nearly every day, cars are a nice break.

Change of Pace – Moving Nightmare and Going Remote

Posted by ARadioGurl on December 21, 2016
Posted in: Daily Life, FMS, History. Tagged: , , , . Leave a Comment

Back in June I made a decision that it was time to solve my financial issues. I needed to stop paying rent and a mortgage, that would free up enough money to pay off my debts and get myself back in the black. The best way to do this was to move from South Florida back to my home on the Space Coast. I gained approval from work to go full time telecommute from my house and asked the renters to move out by the end of three months. Three months later they were still living in the house and I went through a nightmare that has absorbed all my time and energy. Starting telecommute was not the easiest thing, but it was mostly due to the condition of the house. Things are only now beginning to settle down and can I enjoy the quiet of working remote.

Three years ago I rented my home out to a family with a clean history and recommendations. Not long after then moved in, they started having financial issues and the wife serious medical issues. I was fairly sick at the time, so I let them stay in the home at a reduced rental rate as long as they handled the majority of the maintenance. I had a close friend sharing the house with them and everything seemed like it was going okay.

Before the year is up the family is all that remained at the house, occasionally reporting to me that something minor went wrong and that they took care of it. I was fighting the fibromyalgia and severe fatigue issues, which made trips to the Space Coast difficult and rare. In addition I couldn’t go in the house as they had pets that I was highly allergic to.

Two months before the family needed to be out, the wife contacted me asking for more time. She was open with me that she had a drug problem and was trying to get clean, but also that they were broke and couldn’t afford to move. She also mentioned that she was having trouble with some people she had sublet to. I could not afford to help her, they had taken advantage of me, and at this point my finances were struggling much worse than I thought. I haven’t been able to maintain a budget since the fibromyalgia became strong, most of my money was going to medical costs or paying the minimums on credit cards leaving little room for anything besides housing and food. I could no longer afford rent in South Florida and a mortgage for a house I couldn’t use. She agreed to be out, then started telling me a huge list of things that went wrong with the house and had not been fixed.

A month before the family needed to be out the house water pump seized up. I have had three months of consistent exercise without a major flareup, I could easily fix the well system myself and give the house a once over to start making lists. I was only scared of having a fatigue attack on the drive up, so I tried to find someone to go with me. I ended up going up their on my own, suffering a mild fatigue attack on the drive up, requiring me to pull off and rest for a while. Once the fatigue attack was over I completed the three hour drive, meeting up with a friend at the house. Meanwhile the wife checked herself into the ER due to what was discovered to be multiple infections, which had entered her heart. The outside of the house itself didn’t look too bad, but it looked abandoned. The yard was severely overgrown, vines were growing up to the roof, and the side fence couldn’t be seen behind the severe overgrowth. Going inside the house was such a bad experience that I was in disbelief.

The center air died a number of years ago, being replaced with window and standalone units. Not ideal, but I was denied financing needed to replace the system. It was one of the reasons I was renting the home inexpensively. Opening the door to the house we were greeted with a very stale, musky, odor, and no air conditioners in the windows. It was dusty, cluttered, clothes strewn everywhere, and a messed up kitchen. The counters were heavily water damaged, most of the lights didn’t work, some cabinets damaged, and the new (just over one year old) fridge abused and broken. I discovered that they had not been maintaining the well system, it was trying to pump dirt from a dirty aeration tank. Those tanks take years to build up that level of dirt. Easy fix at least and off I went, the house was so dirty my allergies were going to go insane.

The wife contacted me from the hospital, begging to stay. Eventually we came to an agreement where her and her family would remain as temporary roommates, as long as they took care of a number of items. I was planning to be up at the end of the month to start cleanup and repairs, to prep the house for me and my boyfriend to move in. At the end of the month my boyfriend and I show up, nothing had changed, everything worsened, and the reality of how bad everything is started to set in. The wife checked herself out of the hospital to ‘help’ clean. The house was in rough shape with evidence of domestic abuse. With help we start to clean up the yard, installed a couple of window units to dry and cool the main part of the house, and start ripping out the destroyed carpeting. Meanwhile the husband starts yelling at his wife, this was a bad situation. We complete what work we are able to and head back to South Florida. Not long after the wife ended up back in the hospital due to her infections.

The day we planned to move a hurricane hits Florida. A friend stopped and made sure that the house survived and was dry. The husband and son were still living there, but according to the wife, still in the hospital, they should be out the middle of the month. Now that the hurricane was past, we proceed with the move. When we get to the house we have to immediately start bagging and throwing stuff away. I am unable to breath in the house, forcing me to wear a mask the entire time I’m inside. We continued to rip up carpet and searched the moving van for air filters and purifiers.

At this point most of what we were bagging were clothes strewn throughout the house. Maybe they were once clean, but at this point they were covered in cat hair and smelled of piss. There was a cat box that had not been emptied in weeks, the pile of dishes had grown and and there was a strong rotten odor. There was so much to do to make the home sanitary, but my fibro was slowing me down, forcing me to prioritize. The first night in the house was horrifying and my allergies were out of control. The second night we came down with severe food poisoning, it was a non-stop nightmare. It took weeks to get the house cleaned up to the point where I was no longer dry heaving, and weeks longer for my allergies to improve.

The family ‘moved’ out within a week of us showing up. The husband took their child, a few important things, leaving his sick wife in the hospital, and telling us that he didn’t care what happened to the rest of their stuff. He was going to be back for his broken car and toolbox. Within a week the wife’s brother comes by to get some family things, we give him what we could find, he is in shock over how bad everything is, “it’s all turned to shit” and something about laziness. He was right, everything went to shit. They wouldn’t replace light bulbs when they burned out, they didn’t even try the reset switch on the garbage disposal when it stopped working. In my first week I fixed almost everything on the list of broken things, most of it was standard maintenance.

I went to try and fix the laundry machine, opening the door to it made me vomit. It wasn’t draining, old clothes sat in water in there for at least a month, decomposing. Luckily it was a well built washer that once I cleared the drain and sanitized it, is working great and doesn’t smell as nasty. The refrigerator took me a hour one morning patching the freezer door back together to fix. The water softener needed a new part that cost me $25 and 5 minutes to replace. I started fixing the stove, but it was so greasy and nasty that I junked it. The dish washer was barely working, it was starting to rust out and the last couple of years of hard water left it with severe mineral deposits. Both were old, both needed to be replaced, I was lucky to get the financing necessary to replace those.

Once the house was livable and no longer required my boyfriend and I to spend every waking minute cleaning, I resumed work remotely.  Over the weeks I have hacked together a decent little office space in my back room. I have really started to enjoy working remote. I probably put in more hours working remote than I did at the office. I can start work earlier in the morning, my lunches rarely last more than an hour, some as short as 15 minutes, and I don’t have panic attacks worrying about traffic. I miss some of the office interaction and my coworkers, but I don’t miss the open office floor plan. I do not miss being distracted by every little movement or unexpected sound. The best part is that it’s easier to manage my fibro flareups.

My stress levels have fallen a lot over the past month. Each day I manage to clean or fix at least one thing with the house, slowly unboxing what we moved up here with. My main car, my 2006 Audi A3, broke down, had to order new vacuum system parts and ignition coils for it. Fixed the Audi a couple of weeks ago and was able to drive to the main office for a day visit. I only have to drive anywhere a few times a week now. Meanwhile I tried to put my ’62 Impala back on the road after a three year sleep, I got the car running and driving well enough to move her into the garage until more important tasks are complete, such as the dumpster.

I have been working remote for about two months now. I wake up most days, take care of a quick project for the house, get ready for work, then sit down in my office and start coding. If I’m in the zone, I can heat up a quick lunch and eat it without destroying my focus. If I’m feeling a bit burned out, I can sit back in the living room and enjoy a relaxing lunch with some good music. Other days I’ll eat a quick lunch, do chores around the house, then return to work. I’ve set up a mini-fridge in my office area, stocked it with various beverages of varying caffeine levels and nutrition shakes. Working remote has allowed me to tweak my office space to work with my ADHD, fibro flares, and occasional brain fog, something that I could never get right working in an open office environment.

Dental Surgery Recovery

Posted by ARadioGurl on June 1, 2016
Posted in: Daily Life, FMS, History. Tagged: . Leave a Comment

I used to have a bad tooth, it was finally removed a few months ago. Yesterday I went in for followup surgery to install the implant for a permanent replacement, at the time they also removed a wisdom tooth that would’ve blocked the implant. Back when they removed the bad tooth not only was I recovering from the infection caused by it, but I was still having non-diagnosed anemia issues. It kinda wrecked me for a while. This time feels different.

After surgery I had to be wheeled out of the hospital, could barely stand on my own. Some of that was due to fasting, the rest due to the anesthetic they had to sedate me with. They said 24-48 hours for it to work out of my system. By hour four I was feel semi-normal, sore jaw, but semi-normal. By bedtime I was surprised at how not horrible I felt.

When I woke up this morning I was sluggish, from the medications, but I still went and did light exercises and all my stretches. As the morning went on I performed admin work on my Odroid NAS and prepped to mod my APPJ tube amp. Successfully finished this all by 11am.

I have to wonder why I’ve bounced back so much easier this time. Maybe it’s the B12 for my anemia, my change over to healthier nutrition (plus protein) shakes, or is it the Diflunisal the doctor prescribed.

  • B12 has to be the reason I’m no longer fatigued. I don’t crash like I used to and I don’t fatigue while exercising. When I last had major dental surgery done I still suffered from crashes.
  • Nutritional shakes are a recent additional due to their daily cost. Prior to the nutritional shakes I would either eat a Clif bar or have a hemp protein shake. They weren’t unhealthy, but I was not getting all of my nutrients. I started buying the Vega One Nutritional Shakes and they are great. They provide me with most of my needed nutrition, protein, and fiber.
  • Diflunisal is an NSAID used as a very potent anti-inflammatory. The doctor prescribed it for before and after the surgery to help with any potential fibro issues. It seems to be helping as I have no inflammation I can identify. I only have a few days worth, so we’ll see how I’m feeling once I run out.

Whatever the reason, I am very happy that I’m not stuck in bed miserable. I will keep up with the doctor prescribed medications and antibiotics, continue to supplement them with probiotics and proper nutrition, and continue to exercise as my recovery allows.

Gaming with Fibro

Posted by ARadioGurl on November 15, 2015
Posted in: Daily Life, FMS, History. Leave a Comment

I stopped gaming when the fibromyalgia became strong. The wrist and hand pain was too extreme, especially if I wanted to continue my career. That pain has improved significantly since then and I have have started to game again. I started off light with turn based games, such as Endless Legends, and the city builder Cities Skylines. I will easily lose myself in one of those games for hours, completely losing track of everything else, hyperfocus (an ADD/ADHD trait) is a curse and a blessing. I have tried some 3rd person shooters, I cannot play those nearly as long before my wrists need a rest. Most recently I started using a controller for racing games, allows me about an hour of game play before I need to rest.

Six months ago I wasn’t even able to use controllers. Within a few minutes my hands would become too stiff, and if I tried to push through, they would become weak. There have been major changes in my life since then, mostly exercise and treatments. The following has helped:

  • Yoga shoulder stretches to relieve tension
    • I found three stretches that help me, I encourage people to find ones that work well for them.
    • Be cautious if you have hypermobile joints, it is easy to overstretch and hurt oneself.
  • Icing the muscles
    • I ice my shoulders, arms, and wrists, multiple times per day, often working from home on days where I need it more often.
    • I don’t use an actual ice pack, but a cold pack that I keep in my fridge. Ice itself is too cold and will cause more harm than good.
    • 15-30 minutes seems to be a good length for keeping a coldpack on.
  • Therapy
    • Chiropractic and massage therapy, seeing my chiropractor has helped me significantly. I went without a chiropractor for two years and it was steadily downhill. Restarted chiropractor therapy and my body is much happier for it.
    • TENS Unit – Transcutaneous electrical nerve stimulation – I have two
      • Electronic Pulse Massager – inexpensive, but is very useful for spot therapy.
      • Quell – a wearable, I keep it on 24/7 except to charge it. This device helps my entire body, and while expensive, it is worth it to me. It runs an one hour long session every other hour. It communicates over bluetooth with my smart phone, allowing me to change settings see basic statistics. There are negatives, it takes at least a month before it’s completely effective. It also doesn’t work for everyone, but it the company website reports that it works for around 80% of the users. If an inexpensive TENS unit works for you, then a Quell or similar device should also.
    • Medical/chemical
      • This requires a doctor and lots of experimentation. This is not easy, but a good doctor will help. Mine prescribed me a muscle relaxer that I take as needed (usually not more than a couple times per month). Sometimes my muscles will become tensed up and never relax, they forget how to un-tense. The muscle relaxer un-tenses them, allowing the muscles to remember how to be relaxed. This is not a preferred therapy choice as it also relaxes the brain, fogging my thinking, but sometimes it is necessary.
  • Ergonomics (with hypermobility in mind)
    • Monitors at eye level, keyboards at the correct height, and a decent chair, all help a little.
    • As a software engineer I’m on the computer all day long, a good ergonomic keyboard is necessary to reduce the wrist motion. While I use the ergo keyboard for programming, I still use a standard keyboard for gaming.
    • Minimizing laptop use as looking down at the screen is not ergonomic.
  • Rest
    • Many days I am unable to game, probably the majority of days, and that’s okay. I rest on those days so that I can game or pursue personal coding projects on others.
    • A good pillow. Mine came from my chiropractor, it has helped significantly and I tend to sleep an hour longer with it.
  • Exercise
    • When my shoulders and wrists don’t feel strained I am slowly building strength by lifting dumbbells. I just got a new set that allows me to increase weight by 2.5lbs. Small increments are crucial.
    • Walking, I power walk. Power walking is great cardio, but I have to be careful as the arm motions can worsen the shoulder and arm pains. Walking in general helps to build the core and may reduce joint hypermobility.

Anxiety – The Effects of the Side Effects

Posted by ARadioGurl on November 4, 2015
Posted in: FMS, History. Leave a Comment

There was no anxiety when I was a child, as a pre-teen it was slight, and a teen, barely noticeable. As a young adult anxiety existed, but I was able to manage it. After the fibromyalgia hit it became uncontrollable. I used to blame it on the trauma I experienced, but over time I noticed how much the fibro affects it.

When the fibro is not flaring I have excellent control over my anxiety, often not even noticing it until I’ve been out in a crowd for too many hours. As long as I can remember I was only able to handle large crowds for so long, if a friend was with me I was able to last much longer. Even places like super markets and large home improvement stores would eventually overwhelm me, if I was alone. I rarely went out alone, it was not until I started going out alone that I noticed that something was wrong. To work around the “weirdness”, I made sure to never go out alone.

Fast forward to the fibro flareups that began in 2011, then the trauma of 2012 which worsened the intensity of the fibro. Beginning in 2011 I only went out with friends to events and gatherings, or alone to the grocer on the way home from work or early on the weekends. Depending on the day of the week and the intensity of the pain I would not go out at all. After the trauma, I began having multiple panic attacks per day. It was not fun and the flareups correlated with the worst of the attacks.

The anxiety has faded heavily over the past few years, but I panic easily, and anxiety is a primarily a daily annoyance. Over the past couple of years I noticed that on the rare day where the fibro was not affecting me, the anxiety was also easy to manage. Exercise and the rare days where I have the exactly correct mix of meds, I have complete control over my anxiety. I still feel the anxiety, except it is completely managed.

The problem is that I am in a flareup more often than not. In my opinion it sucks a lot, never knowing if tomorrow is going to be one of those rare good days. Each month it is easier to control the anxiety, although at this point the improvements are lesser and lesser.

Living with anxiety is mostly manageable: make time for extra (useless) bathroom trips, avoid stores and bars during peak hours, and avoid any large crowds. The bathroom trips are easy to deal with, it is avoiding people that is hard. Living in a vacation destination makes it hard to avoid people. This past summer tourism records were broken, and my anxiety noticed it. The more time I spend around people, the worst my anxiety gets. When I avoid people, stay in for a few days, it becomes much easier to go out, although it fades quickly. I really look forward to the days where the fibro doesn’t flare.

Anxiety does more than trigger bathroom trips and make going out a horrible experience, it also causes muscles to tense, the neck to become painful when turned wrong, and that horrible sensation that everyone out to make my life horrible. Logically I know that the people out in public don’t care about me, but if I do something wrong my mind makes me believe the worst. The best days are those when fibro doesn’t flare, I have zero issues being out in public. Those days don’t trigger any negative or bad thoughts. Getting the fibro under control would be wonderful, it would make life much easier to manage, and with far less restroom breaks. It is something I dream about.

After the Fall (Where I hit the ground hard)

Posted by ARadioGurl on November 4, 2015
Posted in: Daily Life, FMS, History. Leave a Comment

A few weeks ago, while out for one of my morning power walks, I slipped on wet grass and fell hard. I was trying to avoid a women and her dog, and didn’t realize that I would have no traction on the curb. I did not need help getting home, but it would have been better if I did. I limped for days after the fall, and my hands were in extreme amounts of pain, but I still managed to work.

Now, nearly three weeks later, I still have dull hand pain from that fall. Each day it feels a little better and I expect it to be completely faded the next day, instead the pain just becomes a fraction of one point less. The doctor I see to help with my scoliosis and shoulder/neck pain informed me that I’m experiencing a minor whiplash.

Since the fall I’ve slacked on my exercising. Some stretches, yoga here and there, a little tai chi, but no cardio. Monday night I started cardio exercise again, with some light DDR (Dance Dance Revolution, a video game that uses a dance mat). I felt great that night, but the next day my body was in all sorts of pain, especially the hips and thighs. I still have some of that stamina I’ve been building, but my muscles have weakened and are now out of shape.

Building myself back up, rebuilding what I lost over the few weeks, will not be hard, but there will be pain and aches. The hard part is not over-exercising, which I always seem to do. I’m also hoping that as I rebuild what was lost, my hands will continue to improve. The better my hands feel, the more often I can update my journal. I have some fun hardware projects and software projects to talk about, plus updates to my Aerogarden projects.