Thursday, October 24, 2013

Tales from a Weekend Getaway

Last weekend, my husband and I decided that instead of taking one of our Sunday drives (yes, I think that term might be aging us more than 20 years) that we wanted to get out of town.  It's a beautiful time of year with the leaves changing from green into bright yellows, oranges, and reds. And while I try to forget--winter is just around the corner. 

Our plan to try to get away for the weekend initially didn't pan out as I had hoped.  I was too tired on Friday to leave after packing and making food for the weekend. It's kind of funny that getting ready for our short weekend away actually left me too tired to head off on our trip.  Alas, we had to adjust our plans and instead pack up and go the next morning.

Saturday morning also ended up being a bit of a challenge.  We left and came back to our apartment twice before actually hitting the road "for real". The first time I couldn't remember if I had locked the door.  The second time we were already twenty minutes away and I realized that I had forgotten all the food that I had made for the weekend.  I was just too out of it that morning.  Can you say brain-fog?

But after a rocky start, the weekend turned out quite well indeed. My husband drove and I slept in between stops so I would have energy for the activities ahead.  We began with apple picking at a beautiful orchard.  What looks like markings are actually clay to protect the apples from insects since they are organic and no pesticides were used. 

Our next stop was a small farm where they make cheese from their own cows, goats, and sheep.  I bought a really delicious cheddar cheese that I could keep in my cooler.  That's one benefit of traveling with food allergies--rarely do I go anywhere without a cooler and ice packs.

There were also lots of animals to see on the farm including this adorable baby calf timidly walking about.

The following day, we still had time for a couple activities. We took a leisurely walk with majestic mountain and water views and plenty of benches for resting.  

Our final stop was a town with a cider festival and to our surprise, it had an extensive display of classic cars all along Main Street.  There were even cars over 90 years old from the 1920s.  Pretty Cool!! 

I'd love to take a ride in this one
Then it was time to return home. After a bumpy start, the weekend turned out to be tons of fun.  My husband and I dealt with the accommodations and last minute adjustments that come with traveling with autoimmune disease and food allergies.  Sometimes I think we might actually be getting the hang of this...well sort of...or at least until the next major bump in the road. 

Thursday, October 17, 2013

Changes in Medicine: Not a Piece of Cake

Image Source

Medicines are a daily fact of life for me, and I know in that I'm not alone.  I'm always looking for a way to reduce the drugs that I do take when possible, since virtually all have some level of side effect or interaction with another of my medications.   However, I have learned the hard way that getting off a medicine can be as difficult as getting used to taking a new one to begin with.  I thought I would share my recent story and a few tips that I've learned to deal with any major medicine adjustment.
The backstory here: Recently, my neurologist and I decided it was time to decrease one of my medications.  This was a good thing. I take the medication to help the neurological symptoms that I have from Sjogren's.  It's an anti-seizure medication called Trileptal and helps control the pain and numbness that I have specifically in my trigeminal nerve.  It's not something that prevents my out of whack immune system from attacking itself, so if I can tolerate a lower dose I'm not putting myself at risk of a flare.
As with all medications, there were side effects especially when I first started taking the Trileptal. I felt foggy like I was sleep walking half the time. I eventually "adjusted," but my brain still only worked at a slower speed.  I felt a bit like the scarecrow from the Wizard of Oz wishing that "I only had a brain".  Well, that's not exactly true, but it did feel like I could feel the wheels creaking as the they turned in my head when I had to think hard about something. When autoimmune brain fog hit, the combination was particularly frustrating.   Still, the Trileptal was the best of the many seizure medications that I tried (and there were many) and feeling slow was the least of my problems at the time when I was having such severe, disabling neurological pain.
So fast forward over three years to this summer and it was finally time to try to decrease my dosage.  The medicine is in a tricky class of drugs since one of the risks with going down on anti-seizure medicines, even if you don't have a history of seizures, is that you can actually have one.
My doctor gave me the basic guidelines for how to go down; I thought I'd follow what he said and would hopefully be done with it in a few weeks. Suffice it to say, it didn't end up exactly like that. When I tried to half my dose as my neurologist suggested, I found myself with bad headaches everyday and unable to sleep.  What immediately became clear is that I needed to go down on this medication more gradually than the "average" person.  There was no risk to going down too slowly just to going down too fast.  If I haven't mentioned it before, I tend to be sensitive to medication generally and on many occasions find myself with the side effects that less than 10 percent of the population do. Lucky me!
At that point, I brought my pharmacist and internist into the conversation as well.  The pharmacist helped me figure out the lowest possible dose of the medication available and let me know that the pills were scored so they could be further broken down in smaller increments. Instead of going down by 300 mg or 150 mg at a time, it was actually feasible to go down by 75 mg at a time.  I have now been able to lower my dose by 75 percent and instead of it being a six week process as initially planned, it took me three months.  This is certainly an example where medicine is both art and science, and each patient might need a slightly different approach.  I was more concerned with having the least side effects possible than being off the medication as quickly as possible.  Here's a few of the quick lessons I learned through this process that will hopefully be helpful in the future.  

1) Discuss an overall strategy with your doctor.  Find out about withdrawal side effects with your doctor and, if there are any, which warrant a call to the office or a follow-up visit.  Some side effects of changing your medication might be unavoidable so make sure to ask if there is anything you can do to better manage them and know what to watch for.
2) Keep a daily log of your medication dosage and any side effects you might notice.  This can be especially useful when following up with your physician.
3) Consult your pharmacist.  Not surprisingly, pharmacists sometimes know more about the metabolism, pharmacology, and timing of medications than physicians.  (To me they seem to be underutilized resource in American healthcare.) My pharmacist has been an invaluable resource about drug interactions in the past.  Luckily, my pharmacist and neurologist had the same general recommendation for the maximum amount that I could lower my dose each week.
4) Keep your primary care doctor or internist involved in the conversation.  This is important even if you are working with a specialist.  Your primary care provider often sees you more and can help coordinate care and deal with any important issues or emergencies that might come up.
5) Do your own research about possible dosing of your medication. This can be especially useful if your doctor has not given you dosing options or you are struggling with side effects. Websites such as can be helpful for this kind of information.
6) Don't be afraid to be your own advocate and speak up, call, or email your physician.  As a patient with chronic illness, I sometimes feel like a bother when I contact my doctors office.  But if your physician makes you feel like one, you probably might consider getting a new physician.  
7) Recognize that guidelines for medication dosing are simply that.  Some people are more sensitive to medications than others.  Because not everyone metabolizes drugs the same way, partnering with your doctor to develop an individualized approach to medication dosing can be important.

What have your experiences been with changing medications?  Please share your stories or add any tips to the list. 

Friday, October 11, 2013

Achieving My Goals...On the Football Field

Players Right  After the Snap

I have found that adaptability is a good trait to develop (if you aren't already blessed with it) when you have autoimmune disease.  I realize it's news to few of you but, for most of us, having a chronic illness means that you have much less control over your life.  How you feel varies on a day to day basis and making plans in advance can be futile.  

I have had to work on becoming adaptable.  It's not in my nature.  I like to set a goal, apply laser focus, and accomplish it within a specific timeframe.  If only life were still so simple now. Becoming adaptable has meant finding new interests or enjoying my previous hobbies in different ways.  I used to play sports, exercise, go to the gym.  These days exercising no longer means competitive sports or going for a run and pushing myself to the limit.  I'm lucky to exercise at all.

One channel I have found as a way to replace my enjoyment of participating in competitive sports has been to become an avid sports fan.  I used to enjoy the experience of attending sports games, but I didn't watch many games on TV.  In my new "autoimmune life," I decided that I would start watching football and "learn" the game.  I found that I actually grew to love watching and, as an added attraction, it was a great way for me to bond with my husband--a major football fan. 

To my surprise, I came to realize that football is a really complicated and intricate game.  It is one thing to get the basic gist of what's going on in the game and another to have a good grasp on the multitude of offensive and defensive plays. (I still have a long way to go.)  Understanding football became a project, one that I could do while lying on the couch. The excitement of the games often made me forget that I wasn't feeling well.

As my enjoyment of the game continued to grow over the last few years, I made attending a  NFL game in person a goal.  I wanted to watch my favorite team, the New York Giants. The catch was that I needed to be well enough to go to game.  

The last two months I've had some improvement in my autoimmune symptoms and this fall seemed like it could be my chance.  My husband and I got tickets to a game, keeping our fingers crossed that I would actually be able to make it. 

For a change, everything actually worked out.  The weather was perfect for me -- in the low 70s and cloudy, so I wasn't concerned about the sun causing a flare.  While I was disappointed that the Giants played dismally, there was excitement to just being there with 80,000 other people cheering and rooting.  I can't remember the last time that I've had that kind of experience.  A year ago, I couldn't have imagined being well enough to make the trip to the stadium, having the energy to sit through four hours of football, and contend with large crowds and lines.   

This experience certainly reminded me that while it's important to accept having a chronic illness and its limitations, it is just as important to celebrate those moments when I can tell autoimmune disease to take a back seat.  Now, hopefully, the Giants will turn their season around so I have something to look forward to watching this fall on Sunday afternoons!