Monthly Archives: February 2013

REST ANYONE?

The creepy cough and cold plague is hitting many people I know and made its way right into house-hold.  I have spent the last 14 days trying to get the creepy plague out of my life and just as I turn my corner and feel better my husband is down for the count.  This is happening everywhere and to everyone but we all do the same thing.  I went to the doctor and they said there is nothing that can be done with medication here this is strictly fluids and rest.  Rest? I’m not sure I even really know what that means. I feel like I rest plenty when I’m at home and in my yoga sessions.  There is no standing for long periods of time for me so no yoga, I guess no rest.  Also, my ears are so full I cannot walk without losing my balance which means no walking, doesn’t that automatically mean rest?  I know I’m making light of the situation but the idea that anyone can just climb into bed for 14 days until they feel better is not likely but when you don’t feel well you are forced to find ways to take it easy and rest even if it doesn’t mean bed rest. I also realize that not all colds and flu can be conquered by taking a pill but there must be ways to help relieve people’s suffering and yes it is suffering.

I’m fortunate in a sense because I do take prednisone so when I was feeling my absolute worst I took more prednisone for several days and sure enough the cure all drug kicked in and I was feeling much better. My husband doesn’t have that luxury nor do many other people but it worked for me and I did it.  Isn’t it ironic that the very drug I try so desperately to get off of and even put myself into flare over is the very drug I turned to, to make me feel better in my time of desperation?  Prednisone is a cure all and I know what it can do good and bad.  I have not been able to get back down to my lower dose yet and that will take some time but being the walking dead and trying to function on less than half a brain with no stability is not a pretty sight.

As the weekend approaches I have high hopes of getting back into the Bikram studio and sweating out the last of this nasty cold and starting over next week from the beginning in my cross fit sessions. I know I cannot walk into class and just pick up where I left off 2 weeks ago so I won’t even try.  Instead I’ll remember where I started and where I was a couple of weeks ago and know that I can get back there but it will take some time and my body is still recovering so it will do what it can do and not an ounce more.  Life is forever going to throw us for loops and I’m in one of those loops now but all in all my loops are fairly easy to maneuver.

FUN RECIPE – CHIA PUDDING

This is a quick blog post since I wanted to share this recipe with all of you.  I’m sure every time you turn around you are hearing about the benefits of chia seeds, including the fact that they are high in omega 3’s, help with inflammation and joint pain and can help lower your blood pressure.  Why wouldn’t everyone be eating them?  They are seeds and by themselves not all that fancy, but you can mix them into anything and hardly even know they are there.  I found a recipe that brings out the tastiness of these little morsels called Chia Pudding.  It has the same consistency of tapioca pudding and a very light flavor.

 

¼ cup chia seeds

1.5 cups almond milk

1 tsp. honey or maple syrup

Dash of cinnamon

 

Mix all ingredients into a glass jar with lid on shake hard and refrigerate until next day.  Serve cold.  One jar was 3 servings for us and it was delightful.

BIKRAM THE HEALING AGENT

I feel like an almost normal person.  I very rarely get sick and a lot of times it comes in a form of a flare and it is over.  On Friday I woke up feeling a little off balance and as the days went on I lost my voice, have tight lungs, and a pretty foggy head.  My balance is still off but I think that is the foggy of the head and extra fluid in the head and ears.  I have been using Bikram as a healing agent the last several days and making sure to get into the studio at least once a day.  The humidity is really good for my lungs and I like how they feel taking deep breaths of the wet air.  My lungs really haven’t let me down so other than a hacking cough and no voice no one would even know that I’m not myself.

I went to cross fit this morning and my trainer just looked at me and shook her head. She said are you really going to be able to do this? My response was if my lungs can keep up with my legs I’ll be fine.  Sure enough my lungs did keep up with legs and I was fine.  In general my lungs are extremely healthy and strong so I would have to try running a marathon or swimming laps for them struggle.  The deep breathing I get in yoga every day is really helping to keep them strong even when they seem compromised.  Now I do realize that during this time I need to take care of myself and I’m listening to my loved ones and not pushing it so with my Bikram, a little cross fit this morning the rest of my time is spent walking.  I love to walk and truly can walk for miles upon miles. I don’t think of walking as exercise which is probably why I love it so much.  I use it to clear my head, distress and move my legs.  It doesn’t put added pressure on my lungs and I don’t feel off balance when I get in a rhythm of walking.

When I’m in Bikram and need to balance and then feel off balance it is a bit frustrating but I just remember why I’m really there and it isn’t to get into full position of standing bow right now but more to strengthen my lungs and start to clear this head cold out.  I don’t have to perfect my tree but I do need to stand still and breathe and just take in all the healing powers of Bikram.  The heat is amazing and my body, mind and lungs really enjoy it.  Having a daily practice of Bikram is not easy but certainly worth it.

GLUTEN AND SWOLLEN FINGERS

Could there be a correlation between gluten and swollen fingers?  With MCTD my fingers are pretty much always swollen little sausages but I did get into some gluten with the Valentine’s Day holiday and this morning when I woke up my fingers were even more swollen.  I know it could be water retention if I got into more sodium than usual or the gluten that I had even though it was a small amount, or even the fact that I’m only 9 days back from a flare and maybe my body is still fighting something.  There could be any number of reasons but why this morning?  This is when I track in my journal everything that I do so I can see where I changed things and see if I can put two and two together.  I didn’t consume more sodium than normal so I’m ruling that out.  When I have had other flares I didn’t have overly swollen fingers a week or more later that I mentioned in my writings but gluten has been a trigger for me in other areas.  I don’t have celiac and I don’t have to worry if I get into it but it does make me feel uncomfortable and at least reminds me for a time being until I get into it again.

I did take out eggs and it will be time to try adding them back in soon just to see how my body does with them.  Part of the elimination method is when you try eating something you can see how it effects you.  Be certain when I ate the cupcake that contained gluten, eggs, dairy, sugar  and other things that I have eliminated I didn’t think I would wake up feeling great but I thought it was worth it at that moment.  After this morning I am hoping those moments of worth it are reminders that they aren’t always worth it and I keep moving on and away from the little cupcakes.  Normally I wouldn’t get caught in the gluten crossfire but I got caught up in the moment.  My cute little nephew came in with a box of treats for his auntie and I just couldn’t help myself.  Nor do I want to never eat these things again I just want to know exactly what will happen when I do.  If I want to share something incredible with husband I will, or if my nephew brings me something delicious I’ll enjoy but I know it will have consequences for me.  Just like if I drink white wine I use to love white wine and having a glass with my mother while we talked about whatever it is we talk about.  It came with swollen fingers and a not so nice feeling the next day.  I very rarely if ever drink it now. I don’t know that I can even name the last time I indulged in a glass of white wine.  I have switched to red and as long as it isn’t too sweet and is a good bottle I can have ½ glass without feeling any effects.  If that changes I’ll know because it will be written in my journal but until than when I want to splurge I can and yes I even do from time to time. Not often, but sometimes.  It’s important to pick your moments.

NEEDING COMFORT FOODS

I’m feeling much better and although my flare symptoms were done quickly the fatigue lingers much longer.  I did a lot of Bikram and walking and didn’t do as much weight training but today I’m back to a normal routine and feeling myself again. Having a MCTD flare is much like having a cold or flu in the sense that you don’t feel well and need to take extra care in getting yourself better.

My reserves were depleted, my fatigue was way high and I just didn’t have much will power left in my well over the weekend.  My body wanted pasta, namely macaroni and cheese, I wanted chicken noodle soup with saltine crackers, and I wanted toast.  Truth be told I really didn’t want any of things what I wanted was comfort. I wanted to feel better and comfort in the form of food makes people feel better.  I have not had pasta since before June, nor have I given it any thought.  I like mac & cheese as much as the next person but to go without it is really no big deal at this point.  I make chicken soup all the time just not with noodles or crackers.

Here is what saved me.  My defenses were down and I had nothing in the reserves to stop me from eating major amounts of comfort foods but I didn’t have them available to me.  When you walk into my kitchen and open the fridge, freezer, pantry or any cabinet there is nothing but the food that my husband and I eat regularly.  We don’t have a stash of foods that we want to eat again someday.  There is no pasta in my house therefore I could not go into the kitchen and whip up a yummy mac and cheese meal.  There is no cheese and no pasta the 2 main ingredients. I could have gone out to get pasta and cheese and crackers and anything else that my brain and body thought it needed at that moment but I wasn’t going to.  I didn’t feel well and we were battling Nemo. In general I don’t usually go to the store on a whim to buy anything.  We do our shopping once a week on the weekend and this week it just happened that my husband went on Friday morning before Nemo came to snow us in.  He bought only what we should and could eat and therefore that is what I had to work with.

I still have a comfort that I needed to feed so I did the next best thing by getting out my favorite Paleo recipe books and started to look at comfort foods.  I made banana bread, almond chocolate cookies, hot wings in the crockpot with celery and carrot sticks, pulled BBQ pork in the crockpot and yes even a chicken soup sans the noodles and crackers.  My body was getting all the comfort it desired and none of the gluten, inflammatory foods that I have chosen for myself not to eat.  My big splurge was yogurt and I must admit it tasted really good.  I haven’t had a Greek yogurt since this summer but my husband will still eat them from time to time so I asked if I could have one of his and sure enough it really felt like a treat.  It was sweet, creamy and fruity but it didn’t have a lot of added sugar or carbs and was high in protein so I was able to justify it.

Don’t get me wrong I don’t think there is anything wrong with yogurt in general but for me it is high is sugar and is dairy so I’m picky about it and I guess I really wanted one so I had it. It might be a while before I have another one at this point but I don’t regret having the one I had.  I would regret eating pasta, toast and chicken noodle soup out of can that I’m sure of.  Find comfort in foods that you deem worthy of eating for yourself and your health and then splurge.

BACK TO ZERO DAYS

There are some days when you wake up in flare and have no idea what triggered it, why you are dealing with it, and how long it will last.  Then there are those rare moments when you know a flare is coming and you can pinpoint the mistake that you or in my case made to trigger the flare.  As of today I am back to zero days.  I made it is 76 days this time around but I’m very well aware of what triggered this flare. Not that knowing makes it any less frustrating, nor can I say I won’t do that again but at least I know.  Let me explain.  This past weekend I was explaining to my husband and my family that I have never felt stronger in my entire life.  Which by the way is true, I really haven’t felt stronger and I guess I was starting to feel “normal”  I have blood work coming up, I am eliminating more foods, and I’m training harder with heavier weights. Part of me thought “maybe, just maybe I no longer have MCTD.”  This is a longtime dream of mine and one I will not give up on.  Since I was feeling so sure about myself and apparently a bit arrogant at the same time I decided to take another drop in prednisone and Plaquenil.  On Tuesday night I was smelling “gas” which is a sure sign of a flare coming and on Wed I was in full blown flare.  My fever broke late last night and the burning in my body was over by this morning.  Today I’m utterly exhausted, back up to 5mg on prednisone and back to regular doses of Plaquenil.

There will be light walking for me over the next couple of days and will try to get into Bikram to get some of this fluid off my hands, feet and knees.  I had fluid in around my lungs because I was having a hard time breathing but that is now gone and my breathing is back to normal.  My fatigue is at a red zone high and my brain fog is wearing me out faster than anything else but this is life after a flare so with most things I will deal with as best as I can, not get down on myself, and just realize that I did this.  I can’t promise myself I won’t do it again because that is a lie. I will always tinker with my meds in the hopes that someday I won’t need them but it comes at a price.  For me a big price that will last several days but in the end if I can find my body strong enough to go without medications it will be completely worth it.

GLUTEN AND ARTHRITIS

Friday I got home from a tough week at work feeling pretty exhausted and saw an e-mail from my sister-in-law about gluten and arthritis. She wrote and said I saw this article and thought of you.  I have posted it below for anyone who is interested in reading it. I also, highly suggest anyone with MCTD read it although this is not a MCTD article it is intriguing none the less.

http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=1&_r=1&smid=fb-share

 

I read the first page and tears came to my eyes, as I kept reading more tears came but a sense of change was coming with my tears. Could it be the way people think is changing?  As my husband walked through the door and saw me sitting at the kitchen table with tears, (mind you not full blown ugly cry) he asked me what was wrong.  I proceeded to tell him about how his sister sent me this article about eliminating sugar, gluten, refined carbs in order to help arthritis and how I wish I had this information 10 years ago. How far I could have come in 10 years with this info that I just started learning about recently.  How perhaps if this article made it into her hands then mainstream thinking might be changing.  And, could I reverse the effects of my MCTD by clearing up my “leaky gut” and is it really all about a leaky gut?

He stopped me at that point and said “you don’t get to cry.” Wait, I don’t get to cry?  I have lived with this annoyance of a disease for 10 years with little complaint and I don’t get to cry?  Was he for real?  Yes he was and I’ll tell you why.  He proceeded to say that I have done everything I possibly could for the last 10 years with the information I had at the time.  I made managing this disease my full time job and worked as hard at that as I work in every other aspect of my life.  That I reach out to people almost every day trying to help change their lives so that they aren’t looking back saying “I wish I had that information 10 years ago”  he went on to say that my tears were not sadness or anger so what were they?  They were tears of exhaustion.  True honest exhaustion, and at that moment I realized he was right.  So what if I didn’t have this information 10 years ago I have it now and my life is no where near the end so I have many decades to change the effects of this disease.

I have lived with this disease for 10 years but more than live with it I have managed it.  I have not been hospitalized for it, I do not have nodules on my hands from scar tissue, I don’t have pulmonary issues, I don’t have days when I’m in bed recovering from a flare and I don’t feel as though I have to moderate my life based on having MCTD. I get up every day and do what I need to do, more I do what I want to do.  Sure I wish I was further along and off my medication and didn’t have to see my doctor on a regular basis but I also realize that when I walk into his office I’m one of the healthiest, strongest, positive people that he sees in his day.  I also, am very well aware that I can cry whenever I want but my husband wanted to make the point that the past is not worth crying about.  Nor is the future for that matter since I have no idea what it brings.  Taking care of myself and making sure I’m not overly fatigued to the point where I want to cry is majorly important.

In the midst of all this I got a 2nd e-mail from my sister-in-law telling me that she has been inspired watching me deal with this.  Those are very powerful words and honestly I’m grateful and honored to hear them not from just her, or my other family friends but I hear them from you as my readers and if I can pass along information to some of you then you won’t have to wait 10 years to make a change either and life is all about time and right now we all have it so enjoy it and use it wisely.