fibromyalgia

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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.

Worn Out

Posted by ARadioGurl on March 16, 2016
Posted in: Daily Life, FMS. Tagged: , , . Leave a Comment

My health was doing really well, minor fluctuations, but overall the best I had been doing in a long time, and then I wore myself out. Work gave us an impossible deadline, immediately followed by another impossible deadline. While I do both front and backend development, my focus at work has been frontend. For months we have requested a middleware to handle the majority of the logic and admin tasks. For months we were told they would find a resource to build the middleware. The middleware was axed a few weeks prior to the first deadline. We rushed, working non-stop, just barely delivering a functional, but clunky and unrefined product. They gave us two weeks to implement additional features (including ones not yet available in the API and have no technical documentation) and refine the product.

It was immediately after they gave us two weeks for the next deadline, that both myself and my coworker literally fell apart. Both of us now have health issues that were not bothering us weeks prior to the deadline. I have been fighting constant flareups, unable to stop the pain that returned. At this point I am worn out, only barely able to type this post. Most recently my right arm has started hurting, an extreme pulsating pain that can be triggered by overuse/overextension of most of my right arm and hand. This is a very strong indicator that I’m worn out, it’s time to rest. It is a very good thing that weeks ago I requested tomorrow and Friday off, I have to lay off the computer for a couple of days and I might have been forced to take the days off regardless. Hopefully a couple of days of fun and not having to use the computer will help. Not sure if it will be enough, but maybe it’s also time to slow down at work.

Rockstar Tooth Infection

Posted by ARadioGurl on January 28, 2016
Posted in: Daily Life, FMS. Tagged: , . Leave a Comment

Back in December I acted the part of rockstar programmer and pulled 3rd place (out of 78) in a global tech competition at work. I had come up with a basic idea, found a team that helped me refine it, then coded a simple mobile app in 12 hours. Pulling third was a major confidence boost, I felt great, although the fibro was still flaring up.

Fast forward a couple of weeks, the start of the new year, an old problem starts to act up, a tooth ache. I haven’t been to the dentist in years, not since I maxed out a couple of credit cards five or six years ago having dental work done. This tooth was the first one I had worked on, almost eight years ago, but never finished. It was time to return to the dentist. The tooth deteriorated over the past eight years, it was infected and had to go.

I went on a strong round of antibiotics, my fever shot up, I became very sick. I was out of work through most of this. The one day I go back I rockstar it, solve multiple issues, then the sickness got worse. After that I slowed myself down, forced myself into a slow pace while I recover. After a full week of antibiotics and rest, I was starting to feel better. Additional dental work was done, infection was dead, then I scheduled to have the bad tooth pulled.

Tooth has now been pulled, that was the easy part, and I am recovering. Right now I don’t feel my best, two days of a purely liquid diet and some strong medications have left my head in a balloon. I’m certain part of it is that it was a molar that had to be extracted, another part is that the infection has damaged the jawbone. The damage is going to take time to heal and the even through the infection is no longer active, it has to be flushed out of my system. I am definitely not rockstarring it right now, but I believe I will be once I’m recovered.

I’m feeling hopeful that once I’ve recovered from this, my fibromyalgia will be easier to manage. I won’t be cured of the fibro, there is no cure. I am hoping that this stops or minimizes the reoccurring low grade fevers, and it may even resolve a percentage of body aches. I have read reports of other fibro sufferers seeing a significant reduction in flareups and symptoms. Depending on how bad the infection was, it will take my body roughly three months to detox and recover. I look forward to seeing how well I’m doing come end of April, I have plans to do some rockstarring haxing in May.

Fibro Fevers

Posted by ARadioGurl on May 16, 2015
Posted in: Daily Life, FMS, History. Tagged: , , . Leave a Comment

I get fibro fevers a lot, usually weekly. When I’m active, exercising, and eating health, they’re much easier to manage. I caught my boyfriend’s cold last week, I recovered from it Thursday, here it is Saturday and I have a 100.1f fever. I don’t always notice them, I’ll be at the doctor’s for a checkup and the nurse will say “Did you know you have a fever?”. That fever is always low grade, usually upper 99fs, rarely above 100. Today is a bad one, not sure what triggered it, but it reminded me of when I would get sick growing up.

My parents and I bought my first modern computer in 1997, the year prior relatives gave me an old Mac Plus and I was hooked. I figured that even if I was sick, I could still work on the computer and I tried. My pattern of illness was almost predictable, major sickness at least once a season, and sick during every major school vacation. I’ve gotten sick during many major vacations and trips, sick in the Bahamas more than once, sick in Ireland and Holland, had to push myself to keep on going during a trip to South Africa, and most recently had an intense IBS attack and vasovagal episode during my first night in Orlando for a InfoSec conference. Sickness during the holidays are the ones I remember the clearest.

Sick during Christmas isn’t much fun. You have to force yourself out of bed ignoring the aches and stiffness, wrap yourself up in robes and blankets while struggling to stay warm, and pretend to be well enough that no one else notices. I would sit in front of the computer, open a computer game, try to work on a project, minutes at best, but it would end up exhausting myself and I would have to rest. It was no different during college and no different as a young adult. I hated that sick feeling, quickly putting those memories out of my mind as soon as I was better.

When I have these fibro fevers I feel the same way, I’ve made this connection before on many occasions, but I keep on putting it out of my mind. This makes me wonder if I’ve always had fibro. Either the fibro or the fever makes the joints and muscles ache, often times the muscles feel like they’re burning, and I have more of those electrical like shocks. Being idle makes it worse, it’s why constant exercise is so important.

I’m still not sure if there’s a link between the fibro fevers and caffeine, but I did have a thai iced tea yesterday, first caffeinated beverage in almost a week. The caffeine may have been too much as I crashed last night, then had intense fatigue late this morning. I’m going to keep an eye on my temperature over the next week or three, I’m avoiding caffeine for many reasons and hope it reduces the number of fevers.

Capabilities or Lack Thereof

Posted by ARadioGurl on May 13, 2015
Posted in: Daily Life, FMS, History. Tagged: , , , . Leave a Comment

 

I used to consider myself a highly capable individual. I maintained a high stress, high demand, job and completed a masters degree within a few years. That was before the fibro got strong.

Brain fog and sleep issues had plagued me for since before I started working on the degree. Caffeine, exercise, healthy diet, and mediation helped me manage the brain fog and allowed me to function regardless of how little sleep I had. While working on the degree everything got worse and I blamed it on the late nights and weekends. Once I graduated I would get caught up on sleep and start feeling better. After graduation I started getting more sleep everything did improve, I was able to cut back on the caffeine and enjoy myself.

I had a little over a year between when I finished my masters and when I developed severe carpal tunnel and guyon’s canal syndrome in both wrists. I lived in front of the computer during the work week. During lunch I would exercise at the gym and in the evenings I would work on a podcast, websites, software development, and electronics projects. On the weekends I would work in my gardens or on my cars, and also on my computer. My wrists have always gotten sore after long periods of time in front of the computer, noticed it when I first got a computer in high school. I would always fix my ergonomics and improve it for a while, but it continued to get worse over the years. That year, within a span of a month, the pain went from a 2 or 3 out of 10, to a 9 out of 10.

By the end of April 2011 the pain was so intense that I could only sleep two or three hours a night, at best four. During that time I was diagnosed as having two pinched nerves in each wrist, and within a month surgery was scheduled for the end of June. The pain was so terrible that neither otc analgesics or prescription pain killers helped. I had no appetite and even a small meal would leave my stomach upset. I ended up losing thirty pounds over three months.

After surgery I assumed the pain would go away, it lessened. After six months I returned to the doctor’s office to find out why, they told me it looked like spinal stenosis. Next it was off to a back doctor, but with over a month wait I tried chiropractic. Each morning I would wake up feeling a 2 or 3, by the end of the day the pain would be a 7 or 8, sometimes higher. More than once I laid in bed, writhing and screaming out from the pain. Chiropractic helped to relieve the pain and discovered that I have scoliosis. Thanks to the chiropractor I was able to function a little outside of work, I could once again roller blade and do basic housework.

After a couple months and a couple visit to the back doctor, all they could find was the scoliosis. Ended up going through a handful of other tests and saw a pain management specialist, all they could do was prescribe me gabapentin. Gabapentin helped, but the dose I was on was too high and I had bad mental reactions to it. After that I only used the gabapentin when the pain would flare up. At best I felt limited, unable to enjoy my hobbies, forced to rest and recover. During that time my body deteriorated.

Fast forward a few years and I am still limited. December 2013 I weaned myself off my ADHD medication and over the following six months I put on nearly forty pounds. Summer 2014 I started swimming, it was not easy, but I slowly improved. By October it was too cold to swim and I stopped progressing. For most of November 2014 through April 2015 I walked to and from work, 1.5 miles each way. When I started I struggled, I had to stop for breaks and would arrive in pain, soaked in sweat. After a couple of months I was able to pick up the pace and started power walking. Now it is too hot out to walk to work, thus I have started swimming again and I was even able to jog short distances.

Jogging may be an accomplishment, but it was something the before the fibro became strong I never had issues with. If I was still living in my house I would be struggling with the house and yard work. I want to start freelance programming again, which I did before I started my master’s, but too much time on the computer at night means struggling at work the next day. I’m lucky I can maintain a full time job, even if just only. Six weeks of PTO a year and I will use almost all of it as sick time. I always thought that I could do anything I put my mind to, now I can only do what my body allows me to.

I won’t stop exercising, it’s helped me beat the fatigue and I believe it will continue to help my overall health. I barely capable, but I survive, and I may never be as capable as I was before, but that won’t stop me from trying to get back to that state.

Post 1 – A quick update

Posted by ARadioGurl on May 10, 2015
Posted in: About, FMS, History. Tagged: , , . Leave a Comment

A quick who, what, and why.

Who?

I am a Software Engineer working in the Information Assurance/Security field. Currently I work for a major internet company in their security division. My life has taken me part way around the world, I’ve experienced things most people have only dreamed of, and I have dreams, goals I wish to achieve beyond software.

What?

My goal with this blog is to keep a day-to-day record of thoughts, ideas, feelings, and health issues.

Why?

I have fibromyalgia (FM or FMS), possibly since childhood, definitely since carpal tunnel. Late March 2011 I developed pinched nerves in my carpal tunnel and guyon’s canal of both wrists. I could barely sleep, more than a few hours in front of the computer would leave me in tears, driving was painful, and I could no longer keep up with my job or housework. The lack of sleep fatigued my body, deep aches developed, and I could barely eat. This lasted for a few months until I had carpal tunnel surgery, which would release the pinched nerves. After surgery I started to heal and felt like I was recovering, but at one point the pain leveled off and never went away.

I’m lucky, I am capable of getting this site setup. I’m very lucky as I am also able to maintain a full time job, friends, a relationship, and hobbies, even if just barely. There was a time where I felt like I was capable of anything, now I feel like I’m barely capable of anything. Fibromyalgia is not well understood and often dismissed with a ‘get more exercise’ and ‘eat healthier’, but I used to be a healthy and active person. I will get it under control.