Monday evening is not the most interesting night for ghosts and goblins especially the Monday after a snow storm. I’m guessing many of our little princesses, and sponge Bob’s will be tucked away in their homes very early this evening keeping warm and enjoy the few morsels they may have obtained before the cold got to their parents and made them head home. My husband decided we would still get the same amount of trickers and bought way more candy that we need. I completely believe he wanted some for himself which I can’t blame him.
Me, on the other hand can’t get near it. Last year I had a flare the day after Halloween and all I ate was a Baby Ruth candy bar. Last year I was also gluten free so when I went into flare my physical therapist blamed it on the candy. Now I don’t know if I too blame that little morsel of chocolaty goodness but I’m not willing to take a chance this year. I’m also not gluten free this year so really there should be no harm in a little Halloween candy but my brain won’t let my hand reach into that bowl. It is scared of the candy and my hips thank my brain for that. There is plenty of other Halloween goodness for me to indulge in like my apple cider and apple turnovers I made this weekend.
If I’m going to indulge I want to really enjoy it and I don’t want to worry about a flare whether food is the trigger or not. This way my brain can just relax knowing that I won’t be eating any candy. Instead I will encourage my husband to have all he wants. Happy Halloween!
In case you are thinking I posted an old blog with a title like winter wonderland you are reading it correctly. Today is October 30 and this is what we woke up today. Snow is not my favorite thing to see anytime but especially not in October. Even the first couple of weeks of November we can be assured that the weather might be cold but usually not snow. Now snow for Thanksgiving is no surprise. Not that I like it but I find it acceptable.
This morning my husband was getting up in the dark putting on long underwear and just looked at me with loving eyes as he said “embrace winter my love or it will engulf you.” Oh embrace it I will but in December when I really have no choice at all and still many months of snow to endure. In October I give myself free reign to fight it all the way. As though I can really fight mother nature right. Well in my mind I am fighting. I’m in a t-shirt and flip flops as though it is 70 degrees outside. Did I happen to mention that my husband got our pellet wood stove going yesterday in honor of today’s weather. I’m sitting at my kitchen table with a thermometer that reads 74 degrees and I have zero plans to venture outside in this today so yes today for me it is still a nice warm autumn day and I’m fighting mother nature all the way.
My plan is only as good as the electric company however, since 80k people are without power as we speak if we too lose power today I will have to go into complete winter mode and bundle up as though it is middle of winter because unfortunately furnace heat and pellet stoves don’t work without power. Why don’t we have generator? I ask my husband that every summer when we undoubtedly lose power for several days due to high winds and in the winter time when we lose power several times a season to ice covered trees and power lines. “We are tough Mainers” he says as we throw away all the food from the freezer and refrigerator. Well not this time. I purposely haven’t gone shopping and therefore I’m being very creative with the food that is here. He on the other hand would like something not so creative but this is the compromise I have decided on. No generator no shopping. Creativity at its best. I actually put squash in the oven very early this morning so I could get them roasted for lunch. Squash for lunch was not what he had in mind when he thinks about all the calories he will be burning shoveling and snow blowing. Time to get creative and find high caloric foods to go with that roasted squash. Better get back to finding some creative food ideas while the light still shines.
When are the eyes and the throat connected? When my body is fighting a staph infection in my eye and immune system is revved up in order to kill the staph infection and in turn a MCTD sore throat lets me know my immune system is in override. That is what is happening now. Someone else might think they have an eye infection caused by a cold and that would explain the fever and sore throat. For me it is a little bit different.
Before I tell my story I will preface by saying this is a little graphic but brief. Yesterday afternoon instantly I was having trouble seeing out of my left eye. Needless to say I was a little disturbed but not nearly as disturbed as I felt walking into the bathroom and seeing that I had green gook coming out of my eye. This is not part of a Halloween costume this is my delicate eye producing this. I immediately called my eye doctor and they said come right over. I found this eye doctor the same time I was being diagnosed with MCTD so he has been with me since the beginning and understands that just prescribing me medications for various things doesn’t work well.
He took one look at me and said you have a staph infection. I instantly thought of my nephew. I had just spent some time with him and sometimes he is ill and other times he is teething the symptoms are basically the same and hard to tell what it is. The doctor said that staph infections can be found on any doorknob, facet, refrigerator handle, fax, printer, or anything else that people touch. This year they are seeing more and more of them and although I need to let my sister-in-law know there is no telling where it came from. He put me on a steroid for the eyes since it wouldn’t interfere with anything else I was already taking and said take it easy for a few days.
Fast forward to the evening hours and as I fall into a much needed deep sleep my body starts to repair itself. I wake up with a fever and sore throat and know that my immune system is in override trying to fight the infection. I’m actually thrilled my body does this but at the same time I also need it to quiet down again quickly. That my friend is the trick we are all looking for. Rev and relax is the name of the game but none of us have the directions. I found myself noticing that my toes were aching and my shoulders were a little achy so I did what anyone on the verge of a flare would do and I just slept as long as I possibly could. I feel ok this morning but I know this is not over. My body still has several days of fighting ahead of it and it may be that I’m faced with a flare at the end of this healing process. I will deal with whatever comes and try to find those moments of quiet to let my body know that I’m glad it is working hard but that it can also just relax too. What will be will be
I have mentioned before that I work in an office of less than 40 people and of those people we have 1 with crohn’s, 1 with Type 1 diabetes, 1 with RA, 1 with Lupus and myself with MCTD. The percentage of autoimmune is high in this office but we just added one to the list. Now I have a co-worker with chronic hives that has been linked to an autoimmune disease. Granted there isn’t an autoimmune called hives so this is a symptom of some other autoimmune disease she has that hasn’t surfaced yet other then the hives. She was told that only 1% of people with chronic hives find out what the real issue is. To hear those odds one would bet she won’t ever find out what is causing her hives and how frustrating it is to not know. Many times we just need a name to go along with our illness so we can identify with it and start to manage it. I believe for myself if someone said you will never know what you have but expect to feel terrible at random moments in your life with various pains, burns, and sickness it would be very difficult to mentally get a handle on it.
Having a name and knowing that I have MCTD I can identify with it as part of who I am and go forward to manage it in whatever way works best for me. She has started her first round of a “medication cocktail” to see what combo works and what doesn’t and go from there. She said to me that she thought once she had the drugs that it would go away and that would be that. I explained to her that this is not like strep throat where you take an antibiotic and in a few days everything if fine and you are back to normal. Autoimmune diseases can take many years to figure out whom to manage them and live with them. Our “medication cocktail” as referred to by her doctor is so different for everyone even with the same name of the disease and the trial and error of life is constant. This popped up for this woman in her 40’s and with everything else that a woman deals with in this age group it seems almost unfair to ask her to deal with chronic hives but that is the way life goes for some of us.
As I look around and hear people talk about their lives it seems to me that the percentage of people getting autoimmune diseases is on the rise but I make no claims to be an expert, just and expert listener.
I must tell each and every one of you with children that you are remarkable. It is amazing how much energy, strength and stamina it takes to raise a child. I had a wonderful few days taking care of my nephew while his mommy and daddy took a much needed vacation together. I love this little boy so much and I’m amazed by him every minute. He is running and playing and mumbling which is so fun but way exhausting.
I have felt fatigue in many different layers but never like this. I believe working full time is way easier than being a stay at home mom or dad. That job is the hardest on earth and you are amazing people for doing it. I myself kissed him good-bye and gave him the biggest hug as he left and I will miss him terribly but then I had to come to work to rest.
This type of fatigue is draining and yet satisfying. I don’t usual get to say I think my fatigue is satisfying but then again I have not felt this before. Today I turned 39 which did not go unnoticed by my husband although I would rather it just comes and go and we pay no attention to the fact that I’m only months away from being 40 at this point. Life is flying by and I’m on the fast train of age like everyone else. I don’t have the same energy I had at 20 but who would!!!
Finally after nearly a week my fatigue is fading. Yesterday I was nearly exhausted and struggling but was able to take the day and today to really just rest. It may seem like a waste of a weekend to others but to me some of my favorite weekends include just my husband and myself with very little going on and a whole lot of being together and really just taking it easy. Some of my favorite talks from weekends like this when it feels like our lives are moving so fast and we barely get a chance to really talk after work. This is a time
when sitting and relaxing with one another brings out the best in ourselves and our relationship.
I struggled in power yoga yesterday but today when I went to Bikram felt really strong. When I came home my husband mentioned I looked tired but I assured him I was OK and my fatigue really truly was fading. Not gone but I’ll take fading. Any decrease in my fatigue just helps my overall balance. I will not get a chance to get back into the Bikram studio now until Thursday. I’m hoping I can stay balanced even without yoga for a few days and I’m hoping that by taking it easy and not pushing too hard once I get back in there I’ll be back to my normal Bikram self.
Today I am at 3 days without a flare and yet I’m still not entirely back to base line. It has taken me a little longer then usual to get there this time. My body is OK but my fatigue is at a very high level. I have not worked out in a couple of days and yet when I try to sleep I’m fighting with my mind. Days after a flare rest is the most important thing and yet I’m fighting myself and not finding the rest I need. Between lack of exercise, high level fatigue, zero sleep, and stressful days, and annoying brain fog I feel caught in a tunnel
without a way out.
This weekend I will focus on quiet and force myself to workout in hopes that I can also find the rest my body so badly needs. I have had many flares in my 8 years but this one has the after affects lasting longer then I’m use to and I’m unaware of how to get back to base line. I’m certain that I will find that balance this weekend and mostly I’m looking forward to my Bikram class this morning even if I’m only able to do parts of it. The other time I’ll lie in savassana and really relax which may be what I need anyways.