Saturday, May 18, 2013

What We Really Need

Occasionally, when I get frustrated by all the additional challenges that chronic illness adds to life, I have to force myself to step back and realize how absurd these problems are. I don't say "absurd" to imply that our extra obstacles are laughable or trivial. I mean that they shouldn't be nearly as intimidating as they are.

For instance, I'm currently in the process of moving in with my boyfriend. Apartment hunting has never been an enjoyable task in my experience, but I wasn't prepared for the additional difficulty this time around. I don't drive and I can't handle long walks, so there's no good way to physically peruse the neighborhood for rent signs. On the other hand, I am fortunate enough to be conducting my search in the age of the Internet. I can handle a large portion of the hunt without leaving my desk.

The default starting point in the search tends to be Craigslist. That's not because it's the best website (as a designer, I see a lot of areas that need improvement), but because it's the best-known exchange site. Most of the people who think to post their place online will think of Craigslist first. This means there is a larger pool of residences to choose from. However, there's no good way to search that huge selection for what you really need.

There are a few ways to prune the list quickly, like selecting the option to only view listings with images,  but in all honesty, I'm not nearly as concerned about the woodwork as I am about wheelchair accessibility. Washer/dryer hook ups are nice and all, but I care far more about the proximity of a bus station. There's no effective way to search for these criteria. They are completely essential data points for many, many individuals, yet you would have to be exceedingly lucky to stumble across a listing advertising them. I usually end up closing my browser in frustration after about fifteen minutes.

Finally, a friend of mine (whose boyfriend has similar health issues) recommended another site, I'll admit that I was skeptical at first. I had used other sites in the past, and none had proved fruitful. Some work as conglomerators - they essentially search Craigslist for you and display the results differently to convince you it's not just the same three top-floor apartments. Other sites cater to such a specific demographic that they don't have enough users to generate a lot of content. I don't want to pick on support group websites or anything, because they do a lot of good for a lot of people in need, but they aren't the best place to find an apartment.

Still, my friend insisted that I check out AutNo, so I did. I prepared myself for disappointment, but it didn't come. Rather, I was truly impressed. AutNo was designed for people who don't drive, whatever the reason. The location search was beautifully simple. I could look city-by-city, or just pull up a map. Public transportation stops are marked and prioritized. I could even enter the addresses for my doctor's offices and it would calculate my commute time from the various locations. Handicap accessible apartments were actually marked as such, and they were even specific about whether that applied to the first floor only.

The greatest part was that AutNo was able to add in these much-needed functions without doing away with anything we've come to expect from apartment hunting sites. I was still able to limit my results to places that were within my price range, with enough bedrooms, and would allow my pets. I thought it would be impossible to find somewhere that had everything I needed, but once I plugged the data in, I found no less than three available places in the town I wanted.

I'm now in the process of moving in. Not only is there a ramp and an elevator, but the apartment is perfectly designed to accommodate both me and my more physically capable boyfriend. I have more closet space than I will ever need, and there's even a pool out back where I can do my physical therapy. I truly couldn't be happier with my new place, unless all of my stuff was already inside.

If anyone else is getting fed up trying to find a place, I'll tell you that I came close to tears of frustration more than a few times on Craigslist. I sincerely recommend giving a look. You might be surprised to find out what's right under your nose.

Of course, there are a lot of other stumbling blocks that chronic illness patients will hit that the healthy people don't seem to. We grow to expect this to a certain extent when we go out into the world, but it seems (to me, anyway) to hit a bit harder when we encounter these obstacles online. Often, there's an easy remedy. What kinds of issues have you run into? Share your stories here! Were you able to figure out a fix? If so, let us know, if not, then let's brainstorm!

Saturday, February 9, 2013

Slow Down to Change Gears

I guess it's been quite some time since I posted a blog entry. I honestly hadn't noticed, but it has been months! Lately, I've spent so much time working on other parts of Lemon & Lyme (like our Facebook page, or expanding our Faces of Lyme family) that it honestly didn't occur to me to tell you what I've been up to.

My last post was at the beginning of August, so I'll just give you the highlights. When I wrote the last entry, although I don't think I mentioned it, I had already applied to go back to school. Even with my projects, I felt stagnant, and like I was letting the person I was slip away. So instead of allowing myself to mope about it, I challenged myself. I signed up for a single online class in nutrition, just to see if I would sink or swim.

I got an A+ in the course.

I had chosen nutrition because it actually has practical implications on my life. My list of allergies and foods to avoid is overwhelming at times. I can't have anything with soy, gluten, corn, tomatoes, chocolate... if I typed the whole list, I'm sure my fingers would fall off before I was done. Taking the course was worth it. Not only did the course teach me information that I needed to know, but it also gave me a boost in confidence that I desperately needed at the time.

Don't get me wrong, if I had attempted this before I was ready, I would not have been nearly as happy about the results. Emotionally and mentally, it was time. When I was at my worst and completely bed-bound, just thinking about my favorite activities was exhausting. It wasn't just that I couldn't go hang out with friends, I didn't want to. I was in so much pain that I would hate the experience rather than enjoy it.

After a while, that stopped being the case. Eventually, I had just enough energy to reminisce. Even though I would still have to decline invitations knowing I couldn't make the 20-minute drive to a friend's house, the idea of sharing a hot cup of tea on the couch while watching Doctor Who was awfully tempting. This was when being chronically ill actually became depressing for me. It wasn't until this point that it really set in that my state of health was keeping me from things I wanted to do. When Lyme stopped me from working, that was something very generic. It was much easier to convince myself that a serious illness prevented me from physically exerting myself for eight hours at a time, than it was to admit that I couldn't eek out a single hour of low-key conversation.

But then I got an A. Even if I had only gotten an adequate passing grade, I still would have been proud of myself. One class, without even the commitment of a commute, was a relatively small step, but it meant that I was that much closer to reclaiming the life I once had. It was about then that I had another epiphany

The endpoint of my journey does not have to be the same as its starting point.

By that I mean, I don't necessarily need to judge my progress toward recovery by comparing my life to the way it was before I got sick. Just because I was pursuing one career at the time does not mean that I can't use this pivotal phase in my life to change direction. Back when I lived my life at a mile per minute, I used to wish I had "more time" for certain whims. For example, it wasn't practical to take an extra language class when I was trying to complete a degree program and that requirement was already filled. Now I have all day to sit in front of Rosetta Stone if I want - and there are no deadlines!

In this day and age, we have any information we could possibly want (and far more) right at our fingertips. Anyone with access to a library and a sufficient thirst for knowledge can teach themselves practically anything. With Lyme, I found that the process requires a wealth of both patience and faith in myself.

There is no denying that I don't pick up new concepts as fast as before, and I don't retain the information as well either. The key is to accept this as fact, but also recognize it as a temporary situation that I will overcome. Right now, I can't handle a full-time schedule, and that's okay. Eventually that will come back to me, and I can decide then if it's something that I still want.

Until then, my lack of commitments gives me the free time I've always wanted. While I can't exactly use it to join the Peace Corps, build my own house, or anything like that, there is only so much Lyme can limit me intellectually. Yes, it's harder. Yes, I'm slower. Absolutely and definitely yes, it's frustrating at times. But I'm a fighter.

What have you always wanted to do or learn, but never had the time? What would you need to do to accomplish this?

Click here to return to the My Story section of the Lemon & Lyme site.

Wednesday, August 1, 2012

Killing Trolls and Spirochetes

I have enjoyed computer and video games since I was very small, but they have taken a far more significant role in my life since I became sick. While in the past they were merely a pleasurable pastime, they are now a powerful coping mechanism.

Much like a good book, many games allow the player to mentally slip into another world and ignore reality for a period of time. If the player's attention is focused intently enough, he or she can lose track of everything from the time to their troubles.

When I'm feeling at my worst, there is precious little that I am physically capable of. Because of this, I end up in a foul mood, so there is even less that I want to do. Television and movies don't provide enough stimulation to distract me, but trying to do writing or research feels like work. Often I also have too much brain fog to keep my train of thought.

Video games provide the perfect refuge for me. Certain ones can keep me engaged for hours. It's not as passive as television; I am actively participating in the game. There is also the tactile component of the controls, which helps to cement focus.

Some puzzle and strategy games like Lumosity and sudoku or Civilization and Age of Empires force me to exercise my brain in a way that's still entertaining. Even though I may not be gaining new information or skills in the process, I am still problem-solving and keeping my neurological pathways open and active.

On my worst days, I tend to lean toward simulation and role-playing games. They allow me to play pretend, in a sense. For example, rather than sulking because I can't snowboard, I can bust out a game like SSX. It's not the same thing; I don't feel the wind on my face, but it's much closer than lying in bed and moping.

I've been playing the Sims games (NOT Sim City, the other ones) since its original release in 2000. At first, it was fun to just "play God." as the game grew, it was cool that I could make a digital version of myself who actually got paid to write for a living, or paint, or train horses. Some of my friends and family say the game seems boring or pointless to them, claiming that because they work and then clean the house all day, they don't want to then repeat the process for fun.

On the other hand, I can't accomplish these tasks so easily. To me, these tasks are not routine and tedious. Every time I wipe down the kitchen counter, I feel a surge of pride at my pivotal victory! I should also mention that I tend to work in management and coordination positions when I can work. There is a part of me that really enjoys bossing people around, and digital people complain about it far less.

There are, of course, other times when I'd really rather not be reminded of what I can't do. Sometimes I'll fixate on what I don't get out of the game - the breeze with the snowboarding game, for instance. No matter how hard my Sim works cleaning, my kitchen is still a mess at the end. That's when I turn to more fantastical games.

Role-playing games (RPGs) like Fallout or Oblivion allow me to become someone else entirely, and enter another world where Lyme Disease doesn't even exist. Truthfully, any illness in any of these types of games either only lasts a matter of minutes, or it simply can't happen to you - only non-player characters (NPCs).

Because there is usually a very large monster-killing component, it's an excellent outlet for any aggression I may have as well. Anyone with a chronic illness is going to get angry at their situation. Rather than verbally reaming out some innocent family member passing by when this happens, I'd rather whip the virtual stuffing out of some troll or giant, irradiated mutant insect.

Massively multiplayer online (MMO) RPGs like Lord of the Rings Online also add a social aspect as well. Granted, I am far from the most social kind of player. Typically, I choose to carry out quests and go hunting on my own, but illness can be a very lonely thing, and sometimes the best thing I can do for myself is reach out to someone. Other players can't see me, so they don't know I'm in a wheelchair or even that I'm sick. For all they know, I could have just finished a ten-hour shift at a demanding job. I don't lie, but there are things they don't need to know.

There is one side note that I would like to insert here. Right now, I am essentially advocating the use of video games as an anesthetic. I cannot do this in good conscience without addressing gaming and internet addiction. While I am no expert on this disorder, the general consensus seems to be that this is not a problem inherent to the games. Rather, it is an impulse-control disorder much like a gambling addiction.

It becomes a question of moderation, but this is subjective. For example, if someone gambles away $5,000 in a night, if they only make $18,000 a year, that's a pretty darn good indicator of a problem. If that person is a multi-billionaire instead, the scenario is quite different. Video games don't take time away from my goals, work, or social life. The time I spend playing would be otherwise unoccupied, or possibly filled with less constructive activities like moping.

As my condition improves, I will have to pay attention to my computer usage to make sure I'm starting to acclimate back into my "normal" life. However, I have made a personal decision to not make use of pharmaceutical painkillers during my treatment. For me, video games are an effective substitute with less worrisome potential side effects.

I would love to know how many others out there are also using games to get through the day, and which games they find most beneficial. If you also play one of the games I mentioned that has a social aspect (LOTRO, Sims 3, etc.) feel free to send me an email and let me know your username.

If you happen to be on the Vilya server of LOTRO and you'd like to chat with myself and others dealing with chronic illness (whether it's personally or a loved one) feel free to come and join us in the Chronic chat room. Just go to your chat window and type in "/joinchannel chronic" hit enter, then "/1" and say hi!

Meanwhile, I'll be off killing trolls... and spirochetes!

Update 9/23/2012: Also, check out this graphic on the benefits of playing video games.

Thursday, June 28, 2012

My Gift to Myself

Some of you have noticed that over the past few weeks I have been quite as active on the boards or even on my own website. They haven't been as many updates me updates that have been made or not as extensive as usual.

But don't worry it's not because I've been too sick to use the computer. In fact I was actually busy having a life. Last Saturday was my birthday. I hosted a summer cookout at my house for friends and family. The weeks leading up to this was filled with exhaustive preparation work.

Somehow I managed to scour my entire house until it was cleaner than I have ever seen in my life. I can't say for sure how exactly this was possible because it took far more energy than I had in my body. At the end of each night I would just collapse into a dead sleep.

In the morning I was unrested and unprepared to do it again and yet somehow I did. I was running on fumes and momentum. As I continued to push through the days I felt as though my skin and muscles were rotting away from my bones.

But in the end it was all worth it. The house was absolutely sparkling by the time the party rolled around. I don't think I could've done a better job if I was completely healthy. It was also the perfect birthday gift to myself. Mess and clutter causes me so much anxiety that I would not of been able to enjoy my day without doing this for myself.

My father, who is an incredible chef, helped me prepare a veritable feast of foods that fit my diet. Even those in attendance and don't have food restrictions would impress by how good the food was.

I spent the entire day stuffing my face with delicious treats and socializing with some of my best friends. Not everyone could make it but I will see them on other days and I was amazed by how many people were able to make it out here. I kind of live in the boonies.

Overall, it was an absolutely fantastic day. It was worth all of the effort,even if the were a few breakdowns in the process.

Friday, June 15, 2012

Rules of Engagement

It never ceases to amaze me how much drama can result from one person attempting to help another. This is especially true when both parties have Lyme Disease. Because of the disease's neurological effects, it can often be very difficult for two patients to understand one another.

Communicating via the Internet only makes these problems worse. Using a text based format, it becomes impossible to determine the tone that the person intended. Sarcasm is easily misconstrued and jokes often do not have their desired effect. Additionally, we are very likely to be opinionated about our personal treatment methods.

Unfortunately, along with our confusion, many of us have very short tempers. We're very opinionated about our treatments, too. When we see a comment that we don't like in one of our groups it's often instinct to argue. In turn, this may cause the original poster to become defensive. Before you know it, you're caught in the middle of an all-out flame war.

This becomes incredibly difficult for anyone who is looking for a support group. When looking for a group where you can find encouragement and consolation, no one wants to worry about additional stress. So how can you account for these easily made mistakes? Though it can be frustrating, the answer is patience.

When you encounter a post that you don't agree with, the first rule is to ask yourself whether this post really needs a reply. Taking the time to ask yourself this simple question may cause you to realize that what you were just about to say wasn't all that constructive.

Next, read the post again. Try to figure out if there was another way that that comment could have been meant. Perhaps the person was being sarcastic? Or maybe ironic? Are you sure they were being serious?

However when we see someone post a comment that worries us, such a something that we feel suggests discontinuing treatment or even suicide, courtesy will unfortunately go out the window.Though we don't mean to be crass, our concern is overwhelming and we don't take the time to be polite.

Even the best of support groups can occasionally get a bit out of control. It's your job as an active member to not feed into the drama. Do the best you can not to participate in needless bickering. If you don't feel you can handle this responsibility, privately contact a group moderator and turn off your computer.

I'm sorry if I'm sounding a bit harsh today, but this is something that needs saying. When someone joins a board or group, it's because they are in need of help and support, not petty comments and name-calling. If we can all do our best to live up to these "rules," maybe our boards can become more friendly environments.

Sunday, May 27, 2012

The Right Outlook

I'll be blunt. The reason I haven't posted anything since my disappointing doctor's appointment is because I hate sounding negative. I wanted to be able to come back with really good news, and I didn't think I had that.

Then I realized I was being silly. I have a pervasive, chronic infection and my system is very compromised. My progress is going to be slow and inconsistent. Despite everything I know about Lyme treatment, my subconscious really hoped this new prescription would be a wonder drug.

I can't go through treatment always expecting to find some miracle cure that will have me running and frolicking in a matter of weeks. If I live with those kinds of expectations, I will constantly be let down. There's a reason that "Chronic" is right in the name.

Herxing doesn't make the new medication process much easier, either. Right now, it feels as though my blood is super-heated and my skin is melting off. Those of you who also have Lyme know that's just the beginning.

This journey isn't going to be any easier if I keep dwelling on the negative, either. If I sit and mope about all my joints being swollen, I might overlook the fact that yesterday was the first day in almost a week that I haven't had serious stomach issues.

If I keep focusing on the down side, it also becomes very easy to forget how lucky I actually am. Unlike many, I am blessed with a wonderful support system who are not only sympathetic, but also able and willing to help me get through my treatment financially.

Always stay positive. It makes this really horrendous experience so much more tolerable. Sometimes, f you can find the one miniscule detail in your life that is undeniably good, or at the very least just makes you smile, it makes it worth it.

Tuesday, May 8, 2012

Trial-Run of the "Garlic Footies"

Recently in some of my online Lyme groups, people were buzzing about this "Garlic Footies" detox treatment. Someone posted the video you see below and then everyone sat back and waited for someone else to try it.

Finally, I decided to take one for the team. Here is my experience. Keep in mind that this is the first time I have tried using them. Like many other treatments, as is stated in the video, sometimes the effects of the first night will vary.

Additionally, there is no "control group" in my experiment. It's impossible to say if how I feel to day is due more to the garlic, the weather, or even the phase of the moon. I am going to continue trying this and I'll post any updates.

Once I had slathered on the squishy mix (using a paper towel rather than a plastic glove because I didn't have the energy to head downstairs), I started to notice an effect instantly. It felt as though the muscles directly at the application site were beginning to relax. The oil hydrating my skin also felt amazing.

I do want to make note that it's a good idea to apply the oil to a very large area. The garlic and Vaseline mixture can get squished around very easily, even just while wrapping it in the plastic and putting socks on. You want to make sure it doesn't squish onto your bare skin. Also, olive oil is very high in vitamins E and K, which are fantastic for your skin.

After having the socks on for a few minutes, I began to feel a slight warming and tingling sensation right where the garlic paste was. I wouldn't describe it as a "burning" because it wasn't painful or even unpleasant, but it was a little bit ticklish.

That's about when I went to bed. That was more difficult than I had predicted, because my kitten insisted on attacking my massive, fuzzy Harry Potter socks that all of a sudden would crinkle when she grabbed them.

When I first woke up, I had left my window open and it was now cold and rainy, so I closed it and went back to sleep. I was grumpy and uncomfortable. The second time I woke up was much more pleasant. It was still wet out, but it had stopped raining

The first thing I noticed was the time. It was almost 1:30 in the afternoon! It's been a very long time since I have been able to sleep that long. That was almost twelve hours of sleep! Secondly, when I rolled over, expecting the usual lightning bolt of pain up my side, it didn't come.

Instead, I was just a bit stiff, but no more than I should have been for lying immobile for twelve hours. I was tired, but no more than I used to be after staying up late studying for class, rather than my usual debilitating exhaustion. There was also some mild discomfort in my stomach, but that was also much less than normal, no worse than mild hunger.

Though the pain in my knees and hips is usually crippling, I was able to walk upright to my sink to wash off. Granted, that was only about fifteen feet, but for me it was a huge accomplishment.

When I went to rinse off my feet, it was obvious that some kind of reaction had taken place, because the color had turned a much deeper yellow overnight. That could easily have been due to the warmth, because there was noticeable heat rising from the area.

Once the paste was off, I noticed that the soles of my feet were incredibly soft, though that is most likely due to the vitamins in and hydration properties of the olive oil. Though my soles are usually burning from the Bartonella, today they were only sensitive to pressure. I massaged them a bit, and they felt great.

Now, this treatment is supposed to help brain fog quite a bit, according to the video. I didn't get that particular relief today. I felt like I was thinking through mud all day long. It's now almost 6:30 and this is the firs thing I've accomplished today. However, this was just the first time I'd tried it, and rainy days like today tend to be bad for me.

Overall, I do think it helped. It doesn't seem like a miracle, but it does seem like using this in combination with other treatments under the supervision of an LLMD can be highly beneficial. Like I said, I'll keep trying it and let you guys know how it goes!

Update May 5th: I have not tried using this method again yet. I screwed up a little bit, but I plan on trying again soon. I want to stress first, make sure you're using a lot of oil, especially if you have sensitive skin. Second, I don't recommend using paper towels.

I accidentally wiped off a spot oil when using a paper towel to apply the garlic paste. I knew it was questionable, but decided to let it slide. A few hours after I washed off, I noticed a small blister on that spot.

Next time I try this, I'm going to apply an all-over layer of oil, allow it to sit, and then apply another layer to protect the contact area. Because my skin was so dry, a large portion of the oil absorbed in. Consequently, the application area was itchy the next day. My soles were also tender. It wasn't horrible pain, just uncomfortable. Lesson learned!