Monthly Archives: August 2011


            Today is my 8 year anniversary with whom I chose to spend the rest of my life with and I’m so glad I did.  I will not gush on him because I do enough of that throughout the year and don’t want to bore you.  However, I would be remiss if I did not thank him for all these wonderful years.  8 might not sound like that many until you live with someone who has to manage and deal with a disease.  He has helped me so much and been my rock.  He has taken care of me when I literally couldn’t take care of myself and he has praised me for my hard work and recognizes when I have been on my A Game and really gotten this under control. 

            I look forward to many, many more wonderful years with you Dear Husband and thank you for all you do for me and our family.



            This is a follow up blog to my blog from a couple of days ago.  Since some of you have been reading from the beginning you may have noticed and questioned why my husband lives a dairy free lifestyle and yet I said that our favorite summer time ritual is hitting all the ice cream stands in our area.  You would be right, this doesn’t make a lot of sense to someone who has a true dairy intolerance and suffers severe pain when they eat dairy.

            My husband stopped eating dairy in the winter time to help with his sinus issues and it worked.  He was strict with his diet and noticed some immediate changes and well he had the best feeling winter he has had in a very long time.  He gives all credit to not eating dairy and realizes it is not good for him.  About April I was wanting some ice cream and he said he didn’t want any until June.  We talked about it at first because when you have dietary requirements and you see benefits from it one would question why you would go back. I told him I could wait until June and we could reassess his stance on this.  What I was really thinking is that I could eat ice cream without him and be fine and he could maintain his dairy free lifestyle.

            June arrived and it rained so neither of us even considered standing at a window in the rain waiting for cold ice cream to just increase our chill even more.  However, July arrived and it was warm and glorious. I waited for him to mention that he wanted some ice cream and let’s go.  I did make sure that he was doing this for him and not us or me. I don’t want to be the potential reason he has a relapse.  As it turns out a few trips for ice cream aren’t so bad, but then it got easier for him to eat dairy. For instance he started putting pizza on the weekly grocery list that had mozzarella cheese.  For his birthday he really wanted a home-made cheese-cake and started to take a yogurt to work in his lunch again.  All these put together make for real sinus issues for him even in the summer time.  It didn’t take long for him to notice that he was not feeling well. Not only was his nose a mess but he was feeling it in his belly as well.  He threw the cheese-cake away and he ditched the dairy with an occasional yogurt now.  We did stop at the local ice cream stand while on vacation and he got a small serving of ice cream which he enjoyed very much.

            The key with him is that he needs to keep his diet strict and splurge sparingly which happens to be on our jaunts to ice cream stands which we spread out over the summer and stop after Labor Day.  Unfortunately our summer and ice cream eating are coming to an end very quickly.


            As of Friday afternoon all of the east coast patiently awaited the arrival of Hurricane Irene.  There was a lot of hype about this storm and news crews out all day and evening giving updates about where the eye of the storm was and how fast it was coming to land.  It did arrive just as predicted and landed in the Carolina’s.  On Saturday morning everyone is getting in touch with loved ones making sure people were safe and sound and then also checking on us to make sure we are preparing in Maine.  My brother-in-law who lives in PA contacted us on Sat and said it would “fizzle to a drizzle” by the time it hit Maine.  We were hoping he was right. 

        Saturday was our prepare day, we got water ready, food, and brought everything inside that was not nailed down.  I didn’t know what Sunday was going to look like but I felt confident I had done all I could on Saturday to prepare.  We spent the rest of the day having fun and enjoying some time together.

            Sunday morning we woke up and it seemed relatively calm outside so I headed to my Bikram class.  There were a few die hard Bikram yogis there and the class was a lot of fun and I did much better than I have been doing in there.  All in all we were doing very well in Maine.  Afternoon rolled around and the rains started but the storm wasn’t really due in until 4pm so we were watching a movie and not paying much attention when the lights went off at 1pm.  Now looking back on it there was so much I should have done before those lights went off but it really didn’t seem to be doing much outside.  Well today we are still without power but I have a refrigerator and freezer full of food that I will need to throw away tonight.  They are expecting most of Maine to get power back today and we are hopeful we are in that group but we are also realistic and know we are pretty far out there.  Not a lot of reason for them to hurry and get us turned back on when they have other areas that have higher priority.

            I am thankful that all we lost was power.  We made it safely, un-injured, and everything still standing around us.  We have no damage other than some bushes that took it kind of hard but in the grand scheme of what they were predicting for this storm my brother-in-law was right it did fizzle to a drizzle.  Not every state on the east coast can say that and there are people with severe property damage as well as loss of life.  One might ask did they hype this storm more than necessary.  The answer would be different depending on the person asked.  For someone like me who got the better end of the storm might say it was hyped but those that are feeling loss might say it wasn’t hyped enough.  I can’t begin to pretend what it feels like to be in the eye of a hurricane and survive because that didn’t happen here.  The eye of the storm had broken apart long before it reached us but in Ms. Irene’s path she left behind destruction with some pretty severe winds.  Let’s hope Ms. Irene doesn’t have any friends wanting to make their way up the east coast and we can call it the end of Hurricane season with her.


No surprise to anyone that I would be writing about my nephew on his official 1 year birthday.  What a ride this year has been and so much fun.  He is learning all kinds of new things and experiencing so much.  Not only is he walking/running and seeing the world from an upright position to get a better look he is also experiencing all new tastes.  His mom has decided that since he is a year old new foods can be introduced to him which is very exciting for all of us.  I wouldn’t feed him anything I wouldn’t eat myself and my whole family pretty much eats very healthy so let’s see what have we introduced to him so far.  We gave him lobster which he loved, no butter since we didn’t want him to get sick but just the lobster meat and like a true family member he devoured it.

We gave him my favorite cookie, a hermit, which I was so surprised he liked it since they are pretty distinct in flavor of clover, ginger and molasses but he loved it.  Cheese is a big in this kid’s life and so far he likes it all, Gouda, cheddar, Swiss, mozzarella, goat, and parmesan.  He also ate a spicy pasta salad with red pepper flakes and loved it.  This was actually too hot for my tender mouth and since I eat only mild foods this one was not my idea but that little guy doesn’t mind spice in the least.  We have introduced all kinds of fruits which is A+ in his book and all kinds of vegetables as well.  I love the fact that he is eating this stuff and enjoying it.  So many times kids don’t like certain foods and grow up thinking they will never like them.  Not true little ones, food is good especially all fruits and vegetables.

He is a child that is not going without tons of love and in my book I don’t think you can give a child too much love.  It takes all kinds of people to well round a child and this little guy has some of the best people in his life.  Of course I’m biased but it is my blog so anything goes.  I do hope when he gets a little older that he shares his first ice cream with myself and my husband since every summer my husband and I make it our personal goal to hit every ice cream stand in a 10 mile radius.  If there is a weakness of ours it would be ice cream but this has been our thing since we met.  I don’t know if it is the ice cream or the together, ritual we love so much. I hope to share that with my nephew when his taste buds are ready for sugar.  Not too soon though!

Happy Birthday Little Prince may this year and every year that follows bring you love, joy, happiness, and great treasures.


Oh yeah I’m so very brave, I wrote a couple of days ago about my extremely challenging Bikram practice and that I just had to get back in there and get use to it again. After 5 days this week I would be ready to rock my Bikram practice.  The only problem is that I have been afraid to re-enter.  I finally went in again and it was still tough.  Granted, not as tough as my first time back but I still felt light headed throughout the standing postures and my balance is still off a bit.  I’m afraid of the studio at this particular time but I know where I was when I left so my head tells me that I will find that again while the other part of my head says “do you really want to feel sick and lightheaded again?” My fellow yogis understand my frustration and have themselves been right where I am.  I didn’t have this same problem after being gone a week at my yoga retreat but I was also doing many hours of yoga and in very warm rooms every day so my body didn’t get completely out of routine.

            I will continue pushing myself into that hot scary room for 90 minutes until my body and especially my mind start cooperating and do what I know they can do.  The good news is that with my sister home we are taking some hot vinyasa classes together which is not as hot as Bikram so having some of those to fall back on is a good idea for me at the present time. A quiet mind is going to benefit me so much in this transition if I can just find it.


            I have gone 277 Days without a flare-up and yet the last 3 mornings I have woken with a sore throat.  It hasn’t turned into anything else but I have also been really taking it easy and making sure I don’t overdo anything. I’m taking in lots of fluids to ensure I don’t get dehydrated and have been eating only good wholesome foods to ensure that my body doesn’t have to work too hard to process anything.  I’m basically treating my body as though it is a delicate flower which my husband would say it is the majority of the time I just forget that it is and treat it more like a cactus.  Delicate flowers need to be taken care of very gently and that is what I’m doing now.  If I can keep it to the sore throat and let this pass I’m in the clear which will allow me to get to 278 days.

            My life has changed these last several months and I’m just not willing to go back and deal with flare-ups and bed rest.  I like being upright every day and doing what I want mostly and feeling like I’m just a normal person who is managing my illness really very well.  I have certain symptoms that come on and the sore throat is certainly one of them but in all honesty I get them pretty regularly so I don’t usually worry about this symptom. This time though I have had it 3 days in a row, not something that is typical for me so I need to watch it closely.  My appetite increases when I’m on the verge of a flare and that happened to me a day ago.  I ate everything I came in contact with but nothing came of that and today my appetite is back to normal.  I get a weird pain in my elbow that tells me that a flare is really destined to come but I have not had anything like that in over 270 days so as long as that stays out of picture I believe I can keep myself flare-up free. 

            I’m battling fatigue but I do that without any symptoms of flare so this is a not an indicator for me but it is a gentle reminder to take it easy.  It is very ironic that I would deal with fatigue coming off of a week of total rest, relaxation, and un-plugging but I guess getting back to real life is more exhausting then I thought.  The more sleep I can provide myself over the next several days will take care of that and I should be good. 

            My struggles with Bikram may also stem from fatigue and my flirting with flare-up but I need the Bikram to get the fluid off and make sure my body stays limber.  It doesn’t help that Bikram is a natural dehydration so I really have to make sure to hydrate a lot if and when I get back in there and do my practice.

            Please Mr. Flare stay on your hiatus and leave me to my new life and new journey of working towards an entire year of being flare-up.


            I had some of my most pleasurable talks on the dock with my different family members.  Our dock faced one of the only lighthouses on a lake in Maine called Ladies Delight. Just off the edge of the lighthouse were 3 islands referred to as Three Sisters.  This could not have been more perfect since the ladies in my life are my true delight and I enjoy sharing individual moments with each of them.  One of my favorite people is my sister of course which was perfect to be having sister conversations with her as we just watched the wildlife circle our Three Sister islands off in the distance.

            She is such a smart young woman in the NP program at Penn and really enjoying learning all about the hospital, patients, illnesses, and especially learning how to help these patients.  She is very connected to each one she meets and I just know she will be a great success in her future endeavors.  We  had lots of talks about what she was learning, what she wanted to do with her future and just what life was like as a student at Penn.  She has the entire world at her fingertips and can do whatever she wants with that knowledge.  She is so bright and will be a huge success. I hope one day I have a NP that has those wide opened eyes ready to heal and make life a little easier for her patients.  I typically see doctors who have been doing this along time and although I respect their experience and wisdom sometimes having fresh eyes appeal to me also especially since medicine changes all the time.  Having one bag of tricks for all patients isn’t my favorite philosophy.  My sister and I’s medical paths will probably never cross in the world of medicine but I would enjoy very much having someone just like her take me into a room and start my exam. 

            I got to share nice moments with my mother all week as well since she and I spent a lot of time on the dock together and on the boat together.  She is a lady’s delight for sure and one of my best friends.  She and I have grown from mother/daughter to true friends over the course our lives and I like this relationship the most. I cherish our time together at camp. I kid her a lot and probably more then she would like honestly but it is all in love. 

            The last Lady of delight is my sister-in-law. She is such a wonderful mother and I envy her so but in such a loving way. She is kind and organized and was our “party planner” most of the week. This is first time in many years that she and my brother were with us the entire week.  It was nice having them there.  My nephew was the hit of the week as he should be.  I enjoyed having him there all week and watching what a typical life in their house-hold looks like.  To my lady readers who are moms you guys are incredible. I really don’t know how you run a house-hold even in extreme fatigue situations. I was relaxed but exhausted most of the week and it was nothing more than just living.  I had a private moment with my husband and as much as I would love to call myself a mother I just don’t think I would have the stamina day in and day out.  I loved the week with my family and look forward to many more years of camp life with them.  My husband is a real trooper spending the week with my family every year in case I don’t say it enough.