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. 

The Vitamin D Drops

Image Source

It seems almost every week I read a new article about the importance of vitamin D in protecting against autoimmune disease and preventing its progression for those who have it.  A straight forward discussion of some these findings can be found here.

I've heard from many of my fellow bloggers and readers that when they were diagnosed with autoimmune disease, their vitamin D levels were low.  The same was true for me.   One of my doctors suggested a couple months ago that I try to move from taking 50,000 IU of D once a week to supplementation of 2,000 IU daily.  A huge difference of 36,000 IU weekly.  I figured this would be an experiment--a vitamin D challenge of sorts to see if my levels could stay within normal range.

Last week's doctor's appointment was the moment of truth.  And it turns out that my D levels have plummeted  since changing my dosage.  As a result, I'm back up to 50,000 IU weekly, at least for the next 12 weeks.

What is particularly interesting is that over the last month, I noticed my energy levels had dropped and my brain fog was more apparent.  I was definitely spending more time resting trying to fight that intense autoimmune fatigue.  I'm wondering if there's a relationship here -- did lower vitamin D lead to more Sjogren's symptoms for me?  It also left me thinking whether there is something about autoimmune disease that makes it difficult to metabolize or absorb Vitamin D, leading to the need for higher supplementation. But this is of course a question for the research physicians and scientists out there.

It is true that I don't spend much time in the sun and when I do, I always wear sunblock to prevent evil flares.  However, I was still taking more than twice the Institute of Medicine's current daily recommended dosage as shown below in this chart from the National Institutes of Health Vitamin D fact sheet. 

Table 2: Recommended Dietary Allowances (RDAs) for Vitamin D 

Age	Male	Female	Pregnancy	Lactation
0–12 months*	400 IU (10 mcg)	400 IU (10 mcg)
1–13 years	600 IU (15 mcg)	600 IU (15 mcg)
14–18 years	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg
19–50 years	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)
51–70 years	600 IU (15 mcg)	600 IU (15 mcg)
>70 years	800 IU (20 mcg)	800 IU (20 mcg)

I now know that regular supplementation even with a conscious effort to eat foods high in D like fatty fish just doesn't cut it for me.  I'll have to see what my doctor suggests in three months to try and keep these levels normal. 

Have you noticed a relationship between your autoimmune symptoms and vitamin D levels?  

Living with Autoimmune Disease: Post-Cold Brain Fog

I am now over my cold, but there were some minor hassles along the way as is often the case when you have autoimmune disease.

The good news is that I am physically better.  Yes, my internist made me come in to make sure that it was nothing bacterial and all my tests were negative.  I got over the cold much faster than usual. It didn't take multiple weeks this time. Instead, I felt better after a week of resting and babying myself.  Maybe I can attribute this to the homemade ginger tea with honey bought directly from a local farm that I drank daily. The cold also did not cause a flare, which was a huge relief.

One side effect that has lingered is brain fog.  I can't say for certain that the virus caused the fog, but the timing makes it seem likely.  The fog is worse in the mornings and it takes me until mid-day if at all to get my brain going.  Things that would usually come naturally to me cognitively are a challenge and my mental capacity feels like it has temporarily diminished.  Things take longer.  For me, each episode of brain fog is slightly different.  It's never fun, but I try to get through it with some tips I keep in mind.

1) Keeping myself engaged.  I am reading and now returning to write.  While it can be frustrating, keeping my mind somewhat active in short segments seems to help.

 2) Light non-strenuous exercise improves my concentration and focus.  I have been taking walks or a short bike ride and feel a bit less foggy afterward.

 3) Coffee. Yes, I know many say to stay away from caffeine during brain fog.  But for me, one cup the morning does seem to help.

 4) Keep my calendar up to date. This is one of those times were trying to remember what appointments I have during the week is not going to work.  I will end up at the wrong location at the wrong time. Yes, that has happened before.

 5) Socializing. Brain Fog does not mean you have to hide yourself from the world. Having to interact with others both distracts me from thinking about the fog, but also forces my brain to work and get rolling.  If I don't feel well enough to meet someone, talking on the phone to friends or family is another good option.

 6) Realistic expectations. This is true for living with autoimmune disease generally.  I am putting things aside that I know that I can't handle right now. Trying to read a dense history book or figure out a complicated health insurance issue might just have to wait another few days.

 7) Focus on the basics.  I ask myself what is completely necessary to get done today.  If I am able to handle more that is great, but if not tomorrow is a new day.  And there is a chance the fog will have lifted by then.

I am certainly annoyed by this no good fogginess, but I am relieved it doesn't seem to coincide with feeling worse physically.  Just excuse any typos or commas out of place for now.  How do you get through foggy periods?

My New Low Tech Anti-Brain Fog Tool

Sometimes it is the simple things that can help.

I recently got a dry erase board with a magnet that attaches to my refrigerator.  It has become my new organizational and anti-brain fog tool.  My memory used to be pretty amazing.  I was even resistant to keeping a calendar, but now lists are a must for me.

I have been using it to write down the simplest tasks that need to get done--even loading and unloading the dishwasher, taking out the trash, and basic errands to the market and pharmacy.  It helps me remember  and also adds a sense of accomplishment to those days when I am exhausted and can't do much.  If I just check one or even two items of the list, the day doesn't feel like a waste.  I am thinking of getting another one strictly for my medical related to do lists.  Obviously, creating new lists and making any changes to an existing one is easy.  And the the best part is that it is stuck to the refrigerator so unlike a notebook, I can't forget where I left it!

Here's a link to the one that I have and it is pictured above, but any will do.

Brain Fogging

When I think about what I have been doing for the last few days – it has definitely been brain fogging.  I have started to use brain fog as a verb because I am certainly not doing anything else that involves using my mind particularly well.  The Sjogren’s Syndrome Foundation describes brain fog as the following:


Brain Fog is a lay term to describe fluctuating mild memory loss that is inappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay 

attention, an inability to focus, and difficulty in processing information.

For me, I describe it as feeling like there is cotton in my head that I am trying to push through to no avail.  I knew today would be a challenge when I left my purse that contained my credit cards, money, medicine etc. at the neighborhood coffee shop for over two hours without realizing it was gone.  Luckily, some wonderful person turned it in to the manager and nothing was stolen.  Phew!  So I decided to try and combat the fog by going a on a walk to see if that would get my mind working, but despite my best efforts the fog was still present.

On brain fogging weeks and days, I often find it helpful to keep myself organized by making lists of the priority items that I really need to get done so I don't forget anything important.  Non-essential tasks can wait.  Besides that, I just try to roll with the fogginess, not put too much pressure on myself, and move forward with my day the best that I can and look forward to it LIFTING.  Because I know that it eventually will.

How do you get through those brain fog days?  Do tell!