Saturday, December 08, 2012

Frightening signs of my failing mind

I have always been more than a bit cocky about my memory.  Historically, I have always had excellent retention.  Events, names, numbers, details of movie/book plots, etc.  While not photographic, I felt that I could rely on my memory and trust it thoroughly.  Until recently.

My increasing exhaustion over the last few years could, in and of itself, be eating away at my ability to remember things.  However, Lyme is known for playing havoc with one's mental abilities.

I started feeling the real impact when I couldn't remember whether or not I'd taken various medications and supplements.  I hated having to rely on an external management system, but I ended up getting some of those pill containers that say "A.M./P.M." on them.  I try to line up all my medications for the day at the same time every morning. I've accepted this.

I rarely go to the ATM for cash or to deposit checks.  Most of my banking is done online.  Last week, I needed to grab some cash.  When I put my card in the machine I started to enter my PIN.  After I put in the first digit I wavered.  I was pretty sure that I knew the second digit, but I was not certain.  Each subsequent digit was even more vague in my mind.  After three attempts the machine told me that my access was locked and that I would have to go into a bank to have the card unlocked.

Fortunately, the bank was still open.  When I get to the teller I explained the situation.  She said that she could unlock the card for me but that she had no way of telling me what my PIN actually was.  I asked her if I could reset the PIN to something I knew that I would remember.  She said 'no'.  She did offer to have a reminder mailed to me.  I agreed that it was a good idea.  I cashed a check to myself for the money I needed for the next few days and went home.

The next evening, I needed to go online to pay a bill that had come in the mail.  My online banking password did not seem to be working.  The system offered to let me set it.  I decided to go through with the reset.  Unfortunately, the process involved typing in my elusive PIN! 

I realized that resetting my ATM card had also reset my online banking access.  I knew that I would just have to wait until the reminder form came in the mail. 

When the reminder had not come four days later, I returned to the bank.  The teller explained to me that the reminder would arrive 7-10 business days after I requested.  ARGH!  No access to my bank account, except through the lobby, until I 'rediscovered' my forgotten PIN.

To settle some of my paranoia about the state of my account, the teller printed off the last 15 days worth of activity for me.  I checked it over and everything seemed in order.  However, I was still frustrated with myself over the stupid PIN.

Luckily, the reminder came in the mail the very next day.  When I opened the envelope and stared at the PIN I realized that I had merely been reversing the middle two digits on my first attempt the week before. 

I now have a safe place to store the paper reminder.  I also have it stored electronically in my password vault application (no, I'm not telling anyone what the application is).  The application is becoming more and more valuable to me as I try to better secure my online identity by using varying usernames and secure and unique passwords for every site that I access.  This increase in data in my life comes at an inopportune time, since my memory is becoming more and more unreliable.

I am frightened at the prospect of losing more of my mental faculties to this disease.  Becoming senile has always been a great fear of mine.  While the mental symptoms of Lyme are not the same as senile dementia, the overall impact to my life could end up being the same.  I do not want to become mentally unable to manage my own life or engage in life on my own terms. 

I seriously need to find a way to stop the progress of this disease.  If I can't, I will not allow it to turn me into some useless life form.

Sunday, November 25, 2012

You can please some of the people...

Last night I met a friend for dinner in Nashua. We both wanted to take enjoy the Nashua Winter Stroll. It's a lovely event. All the major downtown streets are closed off. Stores stay open until 10pm. Public buildings, churches, and larger stores all host musical performances. There's a tree lighting and an ice sculpture demonstration in front of city hall.

Several friends who attended said that the event was a boring bust. I had a wonderful time. Those of us who had fun jokingly said that it may have been the company they attended with. They retorted that they had no idea that there were performances going on inside the building. Seriously? Not only was there a downloadable schedule of events, but virtually every store and restaurant had a printed copy near the front of the establishment. If you didn't have a good time, you simply were not trying to!

All the walking around didn't do my chronic pain any good at all. I was extremely sore for at least the last two hours I was walking around. I had my cane with me, but it didn't matter. Anyone else would have left when the pain got severe, or would have opted not to attend an activity that was destined to guarantee an excruciating outcome. However, I have modified my life style so much already over the last few years that I stubbornly refuse to detach myself completely from things I enjoy. I do make some compromises but sometimes I refuse to give into the plaintive voices of the various pains that intrude on my life.

One of the things I needed to take care of this weekend was writing up an announcement for my church newsletter regarding the upcoming titles selected by the book group that I moderate. I've been with this group for a decade. There are six core members, with a few others who move in and out of our orbit.

Our reading choices are all over the map. Our primary focus is literary fiction, but we usually pick up a classic, a science fiction, and a non-fiction title throughout the year. We try to keep our selections under 400 pages, so that everyone can finish the book in a month. We used to have a hard and fast rule that the book had to be "in print" and "in paperback" so that the book was easily available to most who wanted to participate.

Last month we picked a relatively current novel that wasn't available in paperback. When we selected it, the folks who were present decided that it was fine to pick a hardcover as long as it was available in the library since several people never bought the books but always got them at the library. When we met to discuss the book, it turned out that a few of our library-folks hadn't been able to get the book from the library because it had been so popular.

There was some discussion that we should probably avoid "brand new" books since that would make it tough to get them at the library. Our October book had only been out since the end of July. Someone suggested a book for January that had also come out at the same time. The library-folks guessed that it would be fine by then. The state library system has seventeen copies, plus another four in large-print.

For most of my tenure with the group, I have been the primary person recommending books for us to read. More than half the time my choices are shot down. Some of the people who shoot down my choices occasionally make suggestions of their own. So long as we have choices that most of us want to read, I don't care who makes the suggestion.

I tend to recommend titles that are available as audiobooks, since that's the primary way that I 'read'. Once or twice, I have suggested a book that I knew was only available in paperback because it sounded like a good read and worthy of discussion. That last part is sometimes a challenge as well. Just because a book is an enjoyable read, doesn't mean that it will spawn a good discussion.

Last week I suggested another relatively new book for February. Four people chimed in that it sounded like a good choice. This morning, one of the library-folk, Carol, said that it sounded good but that it might be too new to get from the library in time. I decided to check the state library catalog for the book's status. There were seven copies within the system and all were currently checked out.

I founded myself simultaneously bummed and annoyed with the situation. Carol had a point. The book came out in mid-October. February would only be four months after publication. However, here's where my annoyance kicks in. Carol has never suggested something for the group to read, and she didn't offer an alternative this time. So I found myself responding quickly with a bit of venom, which I tempered in the end to hopefully open up the discussion and engage the group in deciding its own operating principals going forward. Here are the questions that I asked and the final point that I made:
  • If we stick to the "paperback" rule, are we assuming that library copies will be readily available at that point?
  • Do books need to be available in e-reader format?
  • Do books need to be available from Audible?
  • If we ditch the paperback rule, how many copies of a book need to be available in the GMILCS system with how many months lead time to assure that the most people in our group will get the chance to read the book before we meet?
  • We do want to make sure that we're reading things that are accessible to the most people. But, we also want to make sure that we are reading things that sound interesting to the most people.
Before receiving Carol's email, I had sent out another book suggestion. In my response to Carol, I pointed out that THAT book was available in paperback but was NOT available in the library system. I truly hope that this interchange with Carol inspires some discussion from the group. I want this group to be of interest to more people, so I don't want to shut down anyone's opinion or stymie their ability to participate. On the other hand, I truly dislike people who are quick to criticize but rare to offer up alternatives themselves. It's far easier to say 'no' than to put your own opinion out there for the judgement of others.

Thursday, November 22, 2012

Vegan Thanksgiving

Since I'm trying to be kind to my liver while I pump it full of even more supplements this week, I'm eating vegan, and avoiding processed foods as much as possible on top of that. That means that a lot of my traditional Thanksgiving foods will be missing today. So, I'm trying to make some foods that are interesting or treat-worthy. I plan on making a variety of things that I can munch on for the next couple of days, just like a 'normal' Thanksgiving.
  • Cranberry Sauce (I will be using some raw sugar to help thicken/set it)
  • Roasted Squash w/Cardamom
  • Roasted Brussel Sprouts
  • Salad
  • Chantarelle Mushrooms, sauteed with garlic, parsley, and onions in butter (Must be 'butter', after all these are Chantarelles!)
  • Red beans and red rice, Caribbean style (except that I'm using red rice)
Another tradition that I hope to indulge in is not food related. This morning I'm going to try to tune in on the Macy's parade, even though TV reception here is tough. Then, while I have my dinner I'm going to watch "Dan in Real Life" and/or "Pieces of April". Happy Thanksgiving!

Tuesday, November 20, 2012

Preparing to wallow in the 'ick'

Last Sunday and Monday I felt utterly awful. Headache, nausea, intestinal weirdness, and general 'ick'. I had been taking two new sets of supplements for several days and suspected them. So, Monday I did not take them. Tuesday, I did not take them. By Tuesday afternoon I almost felt like me again. Wednesday, I did not take them. I was definitely back to being me. On Thursday night, I added the least suspicious supplements back into my routine. Friday and Saturday as well. No 'ill' effects. So, yay. The other supplement that I held off on is recommended for liver support/detox. I initially took 2 in the mornings on an empty stomach (well, except for the other 6 pills that I take in the morning on an empty stomach). With all the drugs and supplements I am taking, and the fact that I may actually be experiencing some toxicity from the die off of the Lyme bugs, I do need to help my liver along. Unfortunately, if the liver does its job it will spew some toxins into my system so that they can make their way out. My naturopath warned me that if the Lyme started dying off, I could feel worse before I felt better. So, I am hoping that last week's episode was a good sign. However, I couldn't afford to be as ill as I was last Monday for the rest of last week. So, I've decided to reintroduce the Vital Nutrients Liver Support II (with Picrorhiza) into my system this week. This morning and tomorrow morning I will just take one of them. From Thursday on I'll go for two pills. To help my system deal with the potential flood of toxins, I decided that I needed to detoxify my diet as much as possible. So long as I have an appetite, I will be eating fruits, vegetables, legumes, nuts and whole unprocessed grains. This means that I will be cooking for myself a lot, and hopefully eating a lot of raw food as well. Since I do need to 'work' today and tomorrow, I need to keep taking my Adderall to stay productive and focused. However, to give my system a break from at least one drug, I plan on staying off all amphetamines for the holiday weekend. I had plans to join some friends on Thursday, but decided that it was better not to 'plan' on doing anything this weekend. There are things I want to try to do. but that will all depend on how I end up feeling. At the very least I'll probably be sluggish and feeling a little 'ick'. Though I am mentally prepared to feel utterly wretched. While planning on making myself ill may not sound like a great way to spend Thanksgiving weekend, if this helps rid me of the Lyme buggers I will have something to be thankful for.

Tuesday, November 13, 2012


A few weeks ago, I turned the ripe old age of fifty. Leading up to the actual birthday I would occasionally ponder 'the meaning' of such a significant birthday. Why is it significant? Fifty is just some number, divisible by five and ten

Does it mark the half way point of life? Statistically, I probably reached my half way point more than ten years ago.

AARP was gracious enough to offer me membership. Now I get lots of advertisements for medicare supplemental insurance, medical devices, and independent living facilities.

Other than that, do I get any benefit from turning 50? Not really. It just means I'm that much closer to retirement.

One of the things that I've noticed in my aging ruminations. I've looked around at my neighbors and younger friends. From my perspective, their lives remind me of busy busy bees or ants. Running here, running there. Pursuing mates. Shepherding children to activities. Striving in their careers. I'm not judging them. I'm just so glad to be passed all that. I've met all those goals that I cared to. What are my goals now?

I want to retire before I'm too broken to enjoy my leisure. I have no great aspirations for traveling the world or becoming some super charged senior volunteer. I just want to live a quiet existence where I can read, learn, and observe the world, and hopefully enjoy the company of good friends. It may sound boring to many, but to me it sounds like heaven.

Sunday, October 21, 2012

Gunky and Funky

I'm getting pretty tired of the constant post-nasal drip that I have been dealing with for the last three weeks.  The sore throat comes and goes as well.  Then there's the general 'blech' feeling after taking various handfuls of pills throughout the day. The headaches have been less bothersome recently (crossing fingers here).

I have still not noticed any physical improvements yet.   However, I am still cautiously optimistic.  I appreciate the fact that it should take at least a full two months of antibiotic treatment to rid my body of the spirochetes.  I do not expect that their mere death with reverse all the damage that they have been the root cause of many annoying health issues.  The first things that I hope to notice is a reduction in my inflammation response and/or an increase in my general energy at that point or soon after.

I will probably modify my diet for a few weeks to something akin to a mild and gradual detox regimen, to help get any remaining Lyme toxins out of my system along with any crud leftover from taking strong antibiotics for a long period of time.  Late Fall and early Winter are not fabulous times for getting fresh fruits and vegetables.  However, some of the larger grocery stores do seem to have a good selection of fresh organic (carbon-heavy shipments from around the world) and frozen organic produce to pick from.  If I go off the antibiotics right after Thanksgiving, the timing will be challenging with all sorts of holiday food lying about.

My mood in the last week has been kind of funky.  I am mostly a positive person these days.  However, life's challenges do get to me eventually.  Dealing with chronic health issues is a big psychological burden of course.  Some personal challenges have also been eating at me this week (lingering financial challenges being caused by medical expenses, parenting doldrums watching my son drop out of college - perhaps for good, mediocre social life, feeling like my current home is an albatross in my life that I can't get rid of, feeling alone in all of it).

This week should be interesting.  I'm only working through Wednesday.  I've taken off Thursday and Friday to commemorate my 50th birthday.  I plan on getting a massage and generally pampering/indulging 'me' next weekend.  On Saturday I hope to meetup with some acquaintances/friends for lunch and arcade time in the earlier part of the day, and then a group of us are meeting up for a screening of "The Rocky Horror Picture Show".  Most of us are planning on dressing for the event, and we'll of course have props with us to interact with the flick.

While I will appreciate the company of the dozen or so people who will be sharing my birthday with me, none of them are 'close friends' or 'family'.  I find myself really missing having regular interaction with people that I feel a strong bond with.  I grew up an only child with a parent who had no real family ties of her own.  When I went to college and met some good friends, I felt like I was building my own kind of family.  Then I married into a family who seemed to embrace me wholeheartedly.    I also picked up a few good friends during the early part of my career.  I chose to move away from my college friends (and work buddies) for a number of reasons.After my divorce, my ex's family washed their hands of me.  The friends I have made since the move are a diverse and busy group of people who I see irregularly.  Good people, all, but we don't have as much invested in each other as my group of college friends and I do.  Part of me wants to move to be closer to some of the folks from that group.  But another part of me says that I should figure out a way to cultivate deeper friendships in the region that I want to continue to live in.

I think that 'big birthday' is adding to my funky mood.  I plan to post something just on my feelings about turning fifty later this week.    I'd love to know if anyone is reading this tale or if it's wholly an archival exercise never to viewed again.

Sunday, October 14, 2012

Headaches are us?

I used to get tons of headaches, sometimes even migraines.  A few years ago the frequency dramatically decreased.  Eventually I put it together that my headaches decreased in frequency and intensity with the onset of menopause.  So, yay!

As I previously mentioned here, I've been waking in the wee hours with a headache that may be related to an increase in teeth grinding.  Then again, it may be yet a byproduct of the spirochete die-off.  This morning, I woke to the worse one yet.    I hadn't taken an antihistamine last night before bed, like I've been trying to do lately, in case the "cold" symptoms are because of allergies.  So, I took one then.  Headache is still here a bit.  I need to get on the exercise bike, but I've been trying to wait out the headache.  Getting your heart rate up when you have a headache is a bad idea.  I've done it.  Not enjoyable in the least.

I didn't have any particular plans for today, since I knew being in training last week was going to take a lot out of me.  Now I feel like I need to do something 'productive', even though I really am still exhausted.  Hopefully, I can find some small-energy endeavors to appease my 'productivity gods'.  I'm already feeling blue enough right now (because of K's revelation that he may not go back to college).  If I go to bed tonight without feeling like I've somehow improved the state of my home, I will REALLY get depressed.  Maybe that's inevitable at this juncture.  A lot has been going on lately that has not made me feel good about the universe. 

Yes, yes.  I know.  Let me pull out my mantras.  I have a great paying job doing (mostly) stuff that I enjoy.  People at work seem to even respect me and seek my input (sometimes to my chagrin ).  I am no longer in a toxic relationship.  My son is healthy.  I just closed out a pile of (partially foolish and partially unavoidable) consumer debt that was a drain on my well being in numerous ways.  I have a comfortable home that I can afford to be in. I am better off in many ways than most people on the planet.

Unfortunately, it is difficult to overcome the wiring of suffering.  I try not to wallow in the negative aspects of my life.  Though it seems that anytime some fresh unexpected disappointment enters, it reawakens the others who preceded it.  I suppose it's like adopting a new crying baby when you just barely convinced your other young children to go to bed a reasonable hours and not to continuously cry through the night seeking your attention.

There's another reason to find some way to be 'productive' around the house.  So long as I am 'doing' something, it's easier to ignore the crying children in my head.

Thursday, October 11, 2012

Harder before it gets easier?

I get to stay home all week and get paid for the privilege.  I'm doing an intensive online training course.  The organization that is running it decided to hold classes on Central Time to be fair to attendees from all over the country.  The regular class runs from 10 a.m. until 6:30 (EST).  We are given a half hour break, and then there are evening sessions that run from 7 p.m. and 8 or 8:30 pm.  Since I normally get up around 4:30 a.m. and work from 7 a.m. until 4 p.m., this is throwing my system off.  I'm also running into scheduling conflicts with some of my normal after-work activities.

While one would think that I would be physically feeling better to be able to stay at home, mostly sitting in my comfy living room chair, you would be wrong to assume so.  I have a good set up at work.  Plus, I change positions a great deal by walking to the cafe or the restroom, or going to meetings, or just walking around when I need to.  This class is not scheduled around my body's need to take breaks.  There are hard breaks at the top of the hour for 5-10 minutes.  Lunch is an hour.  (At work, I hit the gym for just over an hour, making up the time at either end of the day.)

The classes typically involve computer-based exercises.  I have a poor history with making it through all of their exercises without running into technical difficulties.  This time around has been no exception.  Since we're playing around with some hacking tools, we need to be able to shut off our anti-virus software.  My organization has ours locked down pretty tightly.  I can probably uninstall it (but then I'd have to locate the package on our disorganized network to get it reinstalled) or get the admin password (though that might take a couple of days).

With my illness and my normal level of fatigue because of it, I'm having a hard time keeping the momentum going every day.  We're also supposed to have class on Saturday.  It's an all day team-based exercise.  In past years, the curse has carried over to the last day's exercises in spades.  With my health being a bonus feature this time around, I wrote the instructor and told him that I probably would not be able to participate on Saturday.  Part of me feels like a wuss for bowing out.  On the other hand, I need to accept that I do have some limitations.  I desperately need my weekends to recuperate from a normal work week.  There is no way that I can give up my Saturday after THIS week.

One of my "normal after-work activities" of late has been getting a B-12 shot from the doctor who is treating my Lyme Disease.  For the last week or so, I have been suffering from cold-like symptoms in the evenings.  I do have seasonal allergies but I've never had a sore throat like this before, on top of the sneezing and post-nasal drip (which is also pretty bad right now).  I was wondering if it could be a side effect of my antibiotic.  The doctor said that it could be but that it was most likely just a Fall allergy thing.

I had a dentist appointment on Friday.  I was late to it because of a screw up at the car dealership, where I was supposed to be "in and out in 15 minutes".  Anyway.  The hygienist said that I am grinding my teeth, which is why a couple are getting sensitive and also might explain why I'm waking in the middle of the night recently with a headache.

Are we having fun yet?

When I started treatment for the Lyme, my doctor warned me that about three to four weeks into treatment I might feel physically worse as the spirochetes started dying off en mass.  I'm not sure if I've entered that period or not.  Maybe I'm just having a really crappy week.

Sunday, October 07, 2012

Bad allergy, cold, or Doxycycline

I am taking 400mg/day of Doxycycline to treat my Lyme Disease.  While I normally have some post-nasal drip due to various allergies, the past few weeks have been really bad on the 'gunk factor'.  On top of that, I have a sore throat a good deal of the time and I sometimes get moderately congested and sneezy.  Last night I thought that I had the beginnings of a cold.  This morning I feel a little better as far as the sneezing and congestion go.

Also, in the last few weeks I have been getting headaches while I am sleeping.  I usually wake up an hour or so before the alarm goes off.  Lately, I've woken to a moderate headache.  I've been taking acetaminophen and then going back to bed to sleep until the alarm goes off.  The headache has been either less annoying or gone when I wake.

I have an appointment with my doctor on Tuesday for a B-12 injection.  I plan on mentioning these annoyances to him at that time.  I have been on the Doxycycline for just over two weeks now.  While I didn't expect to see any improvement to my Lyme symptoms yet, I wasn't expecting these particular side effects.  It's not enough to want me to give up the antibiotic.  I just want to make sure that these are possible side effects and not something else going on.

Sunday, September 30, 2012

Cross purpose supplements

My latest set of pill-popping dilemmas involves supplements. 

Until I started taking the antibiotic, I was taking a mineral (calcium/magnesium/zine) supplement at bedtime.  The magnesium was supposed to be helping with some of my muscle pain issues and with some sleep issues.   However, I'm supposed to avoid taking in any calcium for at least two hours after I take my antibiotic.  I have to take one dose of my antibiotic with dinner.  I often go to bed less than two hours after eating dinner, since I get home after 6 most days AND the Adderall makes me unhurried about eating any way.

I had been taking St Johns Wort in the morning, since it doesn't like calcium (which I had been taking at night).  So, the first change I made was to switch those around.  I now take the St Johns Wort at bed and the calcium in the morning, at least an hour before breakfast so that it doesn't interfere with the antibiotic.

I am taking two different probiotics to help make up for the good flora that is being killed off by the antibiotic.  I need to take these on an empty stomach so that they hang around in my system and don't just happily eat the food in my stomach.

I just started taking a supplement (serrapeptase) that helps the antibiotics work by attacking the biofilms that the Lyme spirochettes surround themselves with.  It is yet another pill that I need to take on an empty stomach.  Since I am not sure how it will impact the efficacy of the probiotics I am taking, I'm trying to take them an hour apart from each other.

Also, I try to take my Adderall as soon as I get up in the morning to help wake me up and make sure that it is mostly out of my system by the end of the day.

Basically, this means that I'm taking five pills when I get up and then two pills an hour later.  Which also means that I cannot eat breakfast until at least two hours after I get up.  At that point the Adderall has kicked in, so I may not be all THAT interested in breakfast.  However, I have to have a good sized breakfast to take the antibiotic.  (See previous post on the cross purpose drugs.)

Sometimes I think about the amount of pills I take and remember Joan Cusack's character from the movie "Toys".  Turned out that she was a robot of some sort, but at every meal she would take a bunch of pills and put them between two slices of bread and eat her "sandwich".  Not a very popular movie, so I couldn't find a YouTube clip to share unfortunately.

Wednesday, September 26, 2012

Cross purpose pharmaceuticals

In order to combat my Lyme disease, I am taking two hefty doses of an antibiotic that must be taken with food.  If you don't have a good amount of food in your stomach it is highly likely that you will vomit.  In addition, I have a powerful NSAID that I should take several times a day that has the same warnings.  That one I have actually experienced twice.  The first time because I assumed that the warning was on the same level as taking Ibuprofen, which I can gobble up on an empty stomach most of the time without any ill effects.  The resulting nausea and vomiting from my mistake taught be a lesson about heading warnings on prescription pharmaceuticals.  The second time it happened it wasn't because I had taken the pill on an empty stomach.  I learned that "with food" meant a SIGNIFICANT amount of food. 

Part of the disease symptoms that I have to deal with is my constant sleepiness, regardless of how much sleep I get.  I went through a sleep study in July that showed that there is nothing abnormal, or 'non restful', with my sleep patterns.  I was labeled with Idiopathic Hypersomnolence (meaning:  no known cause sleepiness).  To fight the sleepiness I started taking Adderall.  It's an amphetamine.  Amphetamines sap your appetite.  Part of me was looking forward to taking this in hopes that it would help me shed some pounds.  Unfortunately, I'm taking several drugs that are at cross purposes.

The Adderall diminishes my appetite.  I can easily skip breakfast when I'm taking it.  On the other hand, I need to eat a reasonably solid breakfast and then dinner to take two of my other drugs.  I have cut down on my snacking quite a bit since starting the Adderall, so I have dropped a couple of pounds.  However, it does kind of stink that I can't take full advantage of one of it's side effects to REALLY drop some weight.

By the way, when I get ready for bed, one of the drugs I take is a muscle relaxant to minimize the stiffness and potential for muscle spasms that can happen when I sleep.  I have actually injured myself, causing inflammation that takes days to weeks to recover from (see yesterday's post about injury recovery).  Usually the Adderall is out of my system by bed time, but the muscle relaxant is at cross purposes to it as well.

"Better living through chemistry" right?

Tuesday, September 25, 2012

What is your pain level right now?

As a chronic pain sufferer, I am used to answering the following question from medical providers on a regular basis:
On a scale of 1 to 10, what is your pain level right now?
Days like today present a quandary.   It depends on the absolute definition of the word "pain".  (No, no, not "is" or "sex" or "It!") 

Nineteen months ago I slipped on a patch of ice in front of my house and severely damaged the soft tissue in my left shoulder.  Scans showed that there were no tears to any ligaments, tendons, or other mappable structures.  After six months of physical therapy we decided that it was as 'back' as it was going to get.  Unfortunately, this did not leave me with a healthy shoulder.

Part of my chronic health issue over the last seven years has been chronic inflammation.  If I sustain any sort of injury, it seems that I will be plagued by that injury on some level until my dying day.  The left shoulder is a prime example of this scenario.  Every day it at least aches to a certain degree.  Some days it straight out hurts.  Even so, in comparison to other pains that I have struggled with, the chronic shoulder pain rarely merits more than a 7.  However, the shoulder situation is about more than just "pain". 

Usually there is more of a sense of discomfort.  The joint feels swollen in some way.  It can feel better to hold my arm straight up, especially if I bend at the elbow and rest the weight of the arm on my head (nice image, right?  I've gotten some seriously odd stares at the office over this.)  There must be some swelling involved since, at its worse, my left hand feels a bit 'off' and my bicep may feel achy as well.  However, it's not all inflammation since my prescription NSAID only dampens the discomfort a little.  And, it's not strictly pain either, since taking the max dose of my non-opiate prescription pain relievers barely warrants a footnote when the shoulder is really acting up.  Usually both drugs together can  tune the discomfort down a notch or two so that I can get through the day.

USUALLY.  Today is not one of those days. 

If I were to step back and analyze "the pain" in my shoulder right now, it probably would warrant a six.  Right there, in the front of the shoulder.  SIX.  Six isn't that bad, right?

Except it's not just that spot where it definitely "hurts".  It's about all the discomfort in the surrounding tissue, into my bicep, and down to my hand.  THEN, there's the fact that my pelvic girdle is a bit achy today, as is my low back.  On top of that I know that when I get up from this chair, both thighs are going demand my attention with their multiple maddening small to midsized complaints.

It's all additive.  I logically know that all of it together is not as distracting and intolerable as the worse pain that I've ever experienced (tie between gallbladder attack and labor).  Still, when the dozens of bits conspire together you want to be able to quantify the sense that you can barely catch your breath from moment to moment for want of screaming.  Mostly, it's just below that or I wouldn't have been able to write all of this.  Though I did have to stop and refocus myself too many times to count.  Each time I take several deep breaths and try to dispel the cacophony of all those co-conspirators bouncing around in my head.

This is just one example of what it's like to live with chronic pain.  I am so glad that every day is not quite this bad.  Today is one of those days where I contemplate taking up prayer to a deity that I cannot believe in.  Oh, how I wish I could.  If I could pray, I would pray that the Lyme diagnosis and treatment will at least keep the discomfort from reaching this volume  ever again.  I would like to believe that I could make all (or at least most) of the pain go away.  But my skeptical wiring won't even let me hope for something that seems too much like a fairytale.

If you see me and I seem in good spirits, do not assume that it means that I am not in pain.  Also, if I am not showing it, do not ask me about my pain.  When I look fine, I'm doing my best not to think about it.  So please, please, don't remind me.  If I look miserable or distracted, feel free to ask me how I am doing.  Or if I need to talk about it and I trust you enough, I will bring it up. 

The last thing I want is to have my pain define my relationship with others.  Days like today it is hard for even me to remember this, but I am more than this pain that I live with.  Every day.  Every hour.  And sometimes, every minute ... to minute ... to minute.

Monday, September 24, 2012

My muddled mind

In the last year I have become more and more fatigued.  No amount of sleep ever seems to be enough to keep me from being sleepy, or sometimes even nodding off, during the day.  In the last few months, I have found myself being able to remember things.  Mostly it's just the names of things or the names of people.  However, as someone who has always had a great memory for details this turn of events scares the crap out of me.  I am hoping that this is just a side effect of the fatigue and not a symptom all on it's own.  However, memory loss and mind fog are symptoms mentioned on the long list of those associated with Lyme.

In either case, stopping the progression of Lyme should help with both the fatigue and any other neurological issues.  My fear is that some of my symptoms could be permanent.  There's been mention that even if we nip the Lyme progression in the bud, I could still be saddled with the symptoms of Fibromyalgia (which sound an awful lot like Lyme symptoms).  The thinking is that while lots of Fibromyalgia is actually Lyme, people who have had Lyme for a long time may end up with Fibromyalgia even after the spirochetes have been eradicated.

Sunday, September 23, 2012

Sharing at Church

I am not as active in my church as I used to be.  Part of the reason is that we moved further away, and the other reason is that the increasing fatigue I have been struggling with the last few years has made me less inclined to get up and go somewhere unless I absolutely have to.

Today, September twenty-third, would have marked my twenty-third wedding anniversary had I not divorced my husband nearly two years ago.  I had planned on staying close to home today, in part to examine my thoughts and feelings about the date.  A few weeks ago, I agreed to attend a meeting after church today.  I am really interested in the discussion, plus I knew it would probably be better if I didn't stick to my initial plan.  Also, it would give me an opportunity to experience a service with our new interim minister.

I had decided on the way to church that I would get up during the "joys and concerns" portion of the service to mention my recent Lyme diagnosis, along with the fact that I had embarked on an aggressive treatment plan.  As I sat through the beginning part of the service, I realized that I wanted to mention the anniversary as well.  After all, it was part of the 'concern' occupying my mind.

When the time came and the microphone was in my hands, I easily shared the story of my declining health and the probable tie to the Lyme that I was recently diagnosed with.  There were immediate murmurs of sympathy and support.  Then, with a growing catch in my voice, I mentioned the anniversary.  Many in the congregation knew my ex-husband as a pleasant soft-spoken man.  Many had also been informed of his post-divorce diagnosis with ALS and his institutionalization, since he can no longer care for himself.  Part of the reason for the institutionalization had to do with his declining mental state.  In my acknowledgement of our anniversary, I mentioned the illness and how he was no longer the man that most of him had known.  The reaction to that was still supportive, but there was also an air of discomfort.

After the service, many people came up to me to talk to me about the Lyme diagnosis.  But some also came up to me to offer me comfort on a day they could tell was difficult for me. 

What we see of people in public places is not always who they really are.  Just because you see someone for an hour or two every week doesn't mean that you KNOW them.  To really know someone takes an investment of time.  To really know someone you need to experience them in a number of different places and situations.  And finally, I think you need to see them in their home when they are relaxed at the end of a long and congenial evening (on top of the other experiences).  Only then might you begin to see who they really are.

Only a few people at church have some true idea of what went on towards the end of my marriage.  A few others think that they do, because of what my ex-husband said to them during that time.  While I do not want to diminish the warm memories any of his friends at church may have of him, I do hope that they come to realize that there is always more to people than what they let you see in a limited venue for a few hours a week.

Saturday, September 22, 2012

In which we try to attack the Lyme, that we don't "medically" have

As many of you know, I have been suffering from ever-worsening chronic pain and fatigue for a number of years. Doctors have sent me to physical therapy, have put me through numerous tests, and finally have prescribed me symptom-managing drugs. I suspected that I might have Fibromyalgia. This past Spring, one of my physicians official diagnosed me with the Syndrome. As a result of the diagnosis, and her experience with my leg/hip/back pain frequently making it difficult for me to walk long distances, she even signed a request for me to get temporary disability tags for my car.

When discussing the diagnosis and related health issues with some friends on Star Island this Summer, several of them vehemently stated that I have Lyme disease. They asked if I had been tested. There are two insurance-accepted tests for Lyme disease, ELISA and Western Blot. I tested negative on both in the last year. These tests look for a specific number of serum markers. There are more comprehensive tests that my friends encouraged me to look into.

When I returned from vacation, I had a sleep study scheduled. I have been getting more sleepy during the day over the past year. No amount of sleep seems like enough. It took several weeks to get the study results back to the provider who ordered it. She told me that there is nothing going when I sleep that shows anything abnormal (very little snoring, no apnea, normal REM cycle patterns). However, during the day study I showed an extreme ease in falling asleep. Sleep affinity is measured on a scale of 1 to 20. 1 being virtually asleep all the time, and 20 being too awake to fall asleep. My score was a 6. To manage my wakefulness, we ended up going with Aderall. So basically, I'm on amphetamines now, on top of pain meds, muscle relaxers, NSAIDs, and anti-seizure drugs to get rid of shooting pains and tingling.

During one of my check-in visits, I mentioned to my sleep doctor that I was thinking of getting a comprehensive Lyme test since all of my symptoms, including the "idopathic hypersomnolence" that she diagnosed, fell in line with Lyme. Turned out that she had some of the test kits from NeuroScience, Inc. So we drew the blood samples and sent them off to their lab.

My doctor called me on a Saturday morning to tell me that she got my results back. She knew how important this was to me. If I have an infection that is treatable, that is so much easier to accept than having a Syndrome that I'll have for the rest of my life. She told me that her interpretation of the results was that I definitely have a long standing case of Lyme. We agreed to meet later in the week with someone from the lab on the phone to confirm our understanding of the results.

That evening I watched "Under Our Skins" a documentary about Lyme disease and some of the controversies around its diagnosis. There appear to be two vehement camps in this discussion. The Establishment camp consists of the CDC, insurance companies, and most infection disease doctors, who state that Lyme disease is easily detectable with the two tests they recognize and that all the other diagnostic tools out there, or different interpretations of the two recognized tests, are flawed. That patients who do not show as 'positive' on their tests do not have Lyme, but are suffering from something else and should not be treated like they have Lyme.

The other camp of doctors and patients claim that there are multiple strains of Lyme that will not test positive with the narrow definition proclaimed by The Establishment. These doctors, many of whom become members of the International Lyme and Associated Disease Society (ILADS), stand by more comprehensive testing and a less rigid interpretation of Western Blot and ELISA test results. Most of the people who end up as their patients have been bounced around from doctor to doctor, diagnosed with all sorts of chronic syndromes and diseases that have to be suffered through but that cannot be cured. Once these patients end up with an ILADS provider, they are examined for THEIR SYMPTOMS first and are given the standard AND more comprehensive tests to CONFIRM a diagnosis of Lyme or related infection. If this (non-Establishment-based) diagnosis holds up, these patients are treated intensively for an infection that they probably have lived with for years and years. Many to most of these patients GET BETTER with this treatment. Very few suffer lasting side effects from the treatment they are given.

I am not one of those patients, being treated by an ILADS provider using strong doses of antibiotics and supporting supplements to attempt to drive an infection from my body. I received fair warning that there may be uncomfortable side effects during treatment. The antibiotics may make me nauseous, headachey, or give me diarrhea for one. Once the antibiotics start working, the die off of the organisms will release their toxins into my system en masse. So, it is likely that I will feel worse before I see any benefit to the treatment. As rotten as I've been feeling, it is worth the downside to me. Primarily, I want to stop the progression of what has been happening to my body. The last year in particular has been extremely tough. I have even toyed with the idea of going on full disability, which I really can't afford to do.

I took my first dose of mega antibiotics last night with dinner. I haven't been hungry enough today to eat enough food to take my next dose. Hopefully, I can do that soon. Also, I hope to check in hear at least weekly to document the progress of the treatment. If anyone is still checking in here, wish me luck.

Saturday, July 28, 2012

Best Buy's awful customer service

Yesterday I joined the cast of "Lost", that is lost in the phone system of Best Buy customer service.

Last weekend I placed an order for a $300 camera. I realized after the fact that I probably should have picked up one of their extended warranties. Without one, I will undoubtedly drop the camera on the pavement or accident scratch the lens. I looked around online to see if there was a way to order the protection, after having received the merchandise; the camera arrived on Thursday. When I couldn't find a way, I used an email link to ask customer support about picking up the protection. They emailed me back that I had to call customer support to do any post-delivery order modifications.

The call experience did not go well. After more than 12 minutes in the phone system, only about half of which was spent talking to a somewhat baffled customer service agent, I was supposedly transferred to the '.com' area. After about a minute 'on hold' the music stopped playing, but the line did not disconnect. Four minutes after the music stopped, I gave up and called back. Explaining the situation to a young man who got on the line after only about 30 seconds, I was transferred to the ".com" area as requested. Unfortunately, the young woman who picked up the phone less than a minute later couldn't help me. She said she needed to transfer me over the Geek Squad people. I told her that they were the ones who sent me over to the online orders department, since they could not see my order in their system. She kept me on hold for THIRTY FIVE minutes while she attempted to achieve a consensus with the Geek Squad. In the end, she told me that I have to go to a Best Buy store to take care of my request!

Fortunately for Best Buy, I was already planning to visit the store on the way home to pick out a new camera sleeve. My last camera was a Cannon ELPH. The new one was Power Shot. ELPH's are extremely small. Power Shots still qualify as 'pocket' cameras, but just barely, so none of my ELPH sleeves were large enough to properly hold and protect the new camera.

When I presented the situation to the customer service personnel at the Best Buy store, they were quickly able to pull up my order records. Unfortunately, they could only sell me the extended warranty based on the price of the camera in the store. (The online price was $50 less.) I explained to the clerk about the horrible phone experience, saying that I probably deserved at least a year's worth of extended protection for the investment of my time on the phone. She totally sympathized with me, so she asked a colleague if they could somehow sell me the warranty based on the lower base price of the camera. He said that there wasn't a way to override the price of a warranty in their system. I really wanted the warranty, so I paid the extra seven dollars for the in store 2 year extended warranty.

This investment of time and money will probably guarantee that nothing goes wrong with the camera, for at least two years then all bets are off.

This experience has me severely jaded against Best Buy. In summary, their online support told me to go to their phone support. Their phone support ultimately had me go to a store. Their store charged me more for the product I was trying to purchase. If it weren't for the lack of brick-and-mortar options and the fact that their prices are pretty good, I would probably stop shopping there.

Update:  Best Buy sent me a survey about my telephone customer service experience. ROTFL. Both barrels.

Another Update:  Best Buy actually read my feedback and had someone from their customer retention program contact me.  They basically credited me about $40 to my Rewards program to make up for the time and aggravation in the situation.  Not too shabby.

Tuesday, July 24, 2012

Taxi Driver

I was traveling this weekend, so I decided to watch "Taxi Driver" on my iPad during the flights. I finished the very last third at home.

I can see why this film received so much critical aclaim as a 'film'. However, I do not think that I would ever recommend the movie for purely entertainment purposes. The cinematography utilized some innovative elements. And, DeNiro's portrayal of Travis was intense, for sure. Overall though, this film seemed to be about a truly disturbed individual who harbored some very extreme views on the state of society and what was necessary to improve things. I'm not sure why Jodie Foster's portrayal of Iris received so much note. She did an o.k. Job of it, but I don't think that the role was that demanding except perhaps for her reactions to the final violent confrontation scene near the end of the story.

Ultimately, unless you envision yourself asma student of 'the art of film' I see no reason to watch this endeavor.

Monday, July 16, 2012

Becoming classically well-viewed

There are dozens of 'classic' movies that I have never seen. I have decided to challenge myself to correct this great deficit in my education. Every week, unless I am traveling, I will try to watch one of those many 'classic' movies. The definition of 'classic' shall include the American Film Institute's top 100 fils of all time, any Oscar nominated film that suits my fancy, and films listed in he appendix of the book The Film Club.

The first film to be digested, appreciated, and checked off the list is "Lawrence of Arabia". I was inspired to watch this one since it was an obsession of the android character in the recent movie, "Prometheus".

I will not even try to review this, or any of these films. They are after all 'classics', so there are countless reviews, summaries, and odes to these works. However, I now understand why "Lawrence of Arabia" is hailed as a 'classic'. Not only is the film full of grade A actors, giving grade a performances, but the cinematography, costumes, and score were also all wonderous. I'm definitely lookingforward to my next adventure.

Sunday, April 15, 2012

Changing Tactics

The past couple of months I've been engaged in a massive household project. I'm trying to get rid of "stuff". Stuff I don't need. Stuff I don't want in my life. Stuff I don't want to move into another house.

Fact: I currently live in a four level townhouse.
Fact: I have been dealing with chronic pain issues for years, and it's just been getting worse.
Fact: I am not getting any younger. (Duh, no one does!)

My plan is to get this house viewable and ready for sale by April 2014, at the latest. Not only will this involve some renovation and remodeling of the actual house. I will need to divest myself of lots of "stuff" so that the house looks more like a magazine layout than an explosion of crap.

I have found a two level condo, where the master bedroom is on the main floor. The place is a bit smaller than what I have now. Another good reason to have less stuff, aside from the fact that I really don't want to move boxes and boxes of meaningless/useless crap.

One of the contributing factors in my divorce was the ever-clutter-prone state of our living space. Another was my desire to reinvent myself into a person with a brighter and more serene outlook. All the "stuff" I find myself surrounded by not only challenges my sense of lightness and serenity, but it also reflects a past that I am growing away from. It would be easier to accomplish that growth without the hinderances of a lot of the "stuff".

You will notice that I used the word "crap" several times as a synonym for "stuff". When I first embarked on this project, I instantly lit upon the term. It sounds ostentatious as well as fun, doesn't it?

Decrappification involves getting rid of things that I cannot envision in my new life. I have a set of guidelines to help me determine if something needs to go:

  1. Will I probably have an actual use/need of this item in the next 2 years?
  2. If I didn't have the item and I could buy it for a dollar, would I bring it into my life?
  3. Does the item have some sort of emotional significance that is worth being reminded of? If so, would a picture of the item suffice?
  4. Does having the item bring me any measure of joy?
  5. Is it worth paying to have the item moved to a new house?

What this means is that a lot of the following categories of items are being winnowed severely:

  • Books (already emptied four 30"x72" bookcases)
  • Vinyl LPs (all gone)
  • VHS tapes (one 36" shelf remain)
  • CDs (most are already ripped to redundant hard drives, though I'll probably keep about 20% of the current collection)
  • Clothes (ex. 4 drawers of t-shirts. Really?)
  • Fabric and other crafting supplies
  • Dishes (I am single and I rarely entertain. How many glasses/cups do I really need?)

I recently got rid of a lot of expired and useless stuff in my bathroom. I reorganized four cabinets and the linen closet. (See evidence here )

Summary: Decrappification is my current passion. SInce it's easier to write about things that you are passionate about, AND trying to simplify a life that has been consumed by "crap" fits into the concept of "herding kittens", I will probably be reporting in on this project here now.

Sunday, January 15, 2012

New Year's Resolutions

I didn't want to talk about my New Year's resolutions at the very end of the year or the very beginning of the year, like all the other well-intentioned folks out there. I wanted to see how well I stuck to them for the first couple of weeks of the year to see how difficult they were going to be. Two out of the three haven't been difficult at all. One is more of a challenge, but I'm starting to internalize it a bit more every day.

Before I get into what the resolutions were, I'd like to mention that the last few years have been full of resolutions and change. My life today is definitely better than it was five years ago. I'm constantly honing my outlook on what is important and what is not. I have a long way to go on my journey, but it truly is the journey that is the most important thing. I am enjoying the experience, even when things do not turn out the way I would have liked them to.

This year's resolutions probably sound a lot like other people's resolutions:

  • Drop some weight

  • Declutter

  • Manage money better

On the 'drop some weight' front, I have been following the Atkin's diet since January 1. I've dropped around seven pounds at this point. While I would prefer to have gone over to a more raw and vegan diet, I know that Atkins works for me when it comes to weight management. My basic diet consists of animal protein and leafy green vegetables. No fruit, no grain, and virtually no processed foods (unless they are zero or near-zero carbohydrates). The toughest part for me is the 'no alcohol' thing. I had gotten rather used to my after-dinner drink or two most evenings. Giving that up alone probably explains a goodly portion of the weight loss, right? Surprisingly enough, I haven't really missed it. I didn't even mind turning down the wine being passed around at a dinner party last night.

On the 'declutter' front, I am trying to weed out a little something every day from my house. Every time I fill a trash bag I feel like dancing! I have decided to MASSIVELY thin out my book collection. That is going to be extremely difficult. However, I plan to keep my eyes on the prize, as it were. One of the major driving factors behind my decrappification movement is my plans for retirement. I would like to be able to move into a dwelling with half the space that I currently have without feeling cramped in the new space. That shouldn't be too big of a hardship. My current house is about 2100 square feet. I kind of have my eye on a home in another condo community a few miles from here. The houses are not THAT much smaller (nearly 1900 square feet), but they don't have basements to hide your junk in. All the junk would be more visible. Then again, so would the Merrimack River a mere 50 yards from the patio. They also have a garage, so no more cleaning snow off of my car in the winter.

The last big resolution of 'manage money better' is the biggest challenge for me. I have never been much of a saver. I grew up in a household of limited means. Once I started earning my own money I fell into some pretty bad mental habits around 'I deserve ___'. After years of struggling with debt, I had finally cleared the balance sheets a few years ago. I was about to turn things around and begin saving for things I wanted instead of going into debt to get them. Then my husband lost his job. Then our marriage fell apart. Not only is divorce expense for the employed party of divorcing couple, but my old mind set of 'I deserve ___' came back into play under the stress of the situation. Things had calmed down a great deal by early Fall 2011. I was starting to get a handle on my money again. Then a job change with a money flow change challenged my limited financial management skills. Then a situation with my ex-husband raised my stress levels again. I am starting to recover mentally from all of those changes and challenges. But I still find myself giving into my demon more often than is wise. I think I recognize the demon now. Hopefully, that will help me from listening to it. I make a really good living. There is no reason why I should be worrying about money. I create situations for myself that cause the worry.

Perhaps by Chinese New Year I will have that last major resolution full in hand.