Mindfullness and taking a break

As the holiday break draws near I am happy to know that I can relax for at least a little while.  That break is always good for me. 

We had a day all about mindfulness yesterday and the myriad ways that you can bring mindfulness into your life.  It was an amazing day for all involved.  I had the opportunity to share with groups of students how I distress and get into my own groove through crocheting.  I think I may have even brought a few kids over to the yarn side.  I think many of the kids were surprised to see that their teachers need to power down as much as they do and that we have many ways of doing just that.  We all learned about meditation from an expert and for me it was wonderful. 

This is the link for the wonderful woman who taught us about meditation: http://www.innerresourcesproject.com/ .  If you have a moment take a look at her website. 

Enjoy this time of year whether there is a holiday that you celebrate or not.  Remember to relax and have fun.  Live in the moment. 
                                                           Blessings,
                                                           Fibromama

Gastroparesis and Botox

What happens when your gastroparesis gets to the point where nothing is really helping but you're not one of those who throws up all the time or ends up in the hospital (mostly I don't go since most people aren't educated about gastroparesis)?  Well, you end up getting Botox injections in the pylorus valve.  Huh, you say.  What is that?  It's the valve that lets food go from your stomach to your small intestine.  Sometimes it doesn't let food go at the rate it should, thus causing a slow emptying rate.  Now you may ask, how on earth do they give you injections there??  Well, that's not so easy either.  I had an endoscope or EGD done the other day.  I had a few not so pretty spots biopsied and while the doctor was in there he gave me the injections.

Let me back up a bit.  When I went to see the doctor a few weeks ago and we discussed the possibility of this procedure he warned me that it's only a 50% chance of it working.  Not only that but the injection would only work for 3-6 months.  Oh yeah, there are only so many of these injections that I can get.  Hmmm... I still opted for the procedure since some chance is better than no chance and being nauseous 24/7 and having stomach pain is really getting to be more than I can handle on top of all the other things I have.

Back to now...I had the procedure done on Friday.  Let me tell you, it was not pleasant.  My stomach hurt.  I don't know if it was the biopsies or the injections that hurt but something did.  Since then the pain from that has dialed back a bit but, the nausea and pain when I eat or drink is the same if not worse than before.  I think the Botox may take a while to kick in but I feel like someone punched me in the stomach.  As of now I don't think this is helping but I'll give it until I call for my biopsy results.  At that point I think I will have given it enough time to raise the question with the doctor of whether or not this has failed me. If it hasn't worked where do I go from here?? I don't know.  I just know that I don't like feeling this way.  I don't mind that I'm back to eating only a few tablespoons of food at a time since that might make some of this excess (yes, even people with this disease gain weight) weight go away but, that seems to be my only silver lining.

We'll see what the future holds.  Blessings to you my friends.
                                               Much love,
                                               Fibromama

Seasonal Health Changes

Do your health conditions change with the seasons?  Maybe they flare when the seasons change.  I know mine sure do.  My joints ache as spring approaches.  My muscles freeze up and don't want to move.  The tingling and numbness that I feel (somewhat normally in my hands) is also in my legs now.  This particular change of seasons seems to be the worst I've had in a long time.  I don't think I've had one where my legs and back just simply stop working and I can't walk before.  What are your seasonal flare symptoms?  What helps you?  I've resorted to Thermacare wraps or other such throw away heated wraps since I can wear them to work.  I'm also using pain patches and pain rubs since I don't really want to take more pain pills.  I have resorted to more pain meds and muscle relaxants but I hate doing that.  Share your experiences and remedies please. 

On another topic, how many of you have or are going through the blood work circle?  Take the blood, wait for the results and be told we've found nothing (or at least nothing related to anything important (oh yeah, you need more vitamin D-great, I can do that.).  I'm there yet again.  Frustrated because I know I feel like garbage and while at least some of it is undoubtedly the seasonal change bit some of it clearly is not.  Blood work is not always the answer but it seems to be the one the doctors go to for everything.  When the blood work doesn't work why don't they do something else?  I don't feel better (though the steroids helped a bit- and why did they, figure that out). AARRGGHH!!! Yeah, it frustrates me but I'm so tired of the feeling that I  need to tell doctors how to do their jobs that I'd just about rather deal with the pain.  I don't know about you, my friends, but I like out of the box thinkers.  Ah well, too bad there aren't many of them.  Happy Spring!  Love and blessings to you my fellow chronic pain warriors. 

Sensitivity to noise and other things

I had a nice long weekend thanks to a professional day, President's Day and a snow day.  Now that I am back at work I am realizing just how lovely the quiet was at home.  I always forget just how loud my workplace can be. I'm a middle school teacher and it doesn't get much louder than that.  The noise that I'm hearing this morning is painful.  My desire to curl up in a ball and cry is slightly overwhelming. 

I also realize that being surrounded by light is making my brain hurt.  At home I keep window blinds open so I get natural light but I don't always have electric lights on (unless I really need them).  Natural light doesn't have the same negative effect on me that electric light does.  I wonder if that's the same for everyone else. 

The other thing that gets to me is the heat in buildings.  It doesn't help that I have my own internal heating system (or my own perpetual summer).  The heat in my building at work is dry and uncomfortable and I don't run it much at home so this is not fun for me.  I'm sweaty and feel like I need to sleep. 

OK, I'm finished with my rant.  I feel kind of yucky today.  I can't afford to feel yucky right now.  My grandson is home and I can't wait to see him next week.  I want to hold my sweet little boy.  :) Love and blessings to you all. 

Valentine's Day is for Who???

Welcome back my friends and fellow warriors!  As we approach Valentine's Day I thought I'd give you a shout out and wish everyone well.  We all know that this time of year can be tough for many of us who have chronic illnesses.  Sometimes the rest of the world forgets we exist or they just think we don't want to participate.  Well, guess what world...YOU'RE WRONG!!!! We do exist and even if we feel crappy a little love might be nice even on a Hallmark holiday. 

I grew up in a house where we exchanged cards and little gifts for Valentine's Day so I never got the whole romantic thing.  I just thought it was a day to show love to your family.  I was the kid who happily gave a Valentine to every kid in my class and never understood why others fussed about who they gave them to.  As it turns out I married a man who wants nothing to do with Valentine's Day.  I tried to change that for many years and then gave up.  When my kids were little I gave them little gifts and cards.  They liked it but because they went to a religious school it wasn't celebrated there and their friends weren't a part of the celebration they had with Mom at home so that didn't last either.  Now they're grown and neither celebrates the day.  Oh well...

I will say that I have something to celebrate this Valentine's Day.  I became a Grandma on February 1st.  My little grandson is absolutely adorable.  I haven't met him in person yet even though I was at the hospital when he was born.  He's in the NICU until next Tuesday.  I can't wait to meet him in person.  Talk about a gift from above. 

Well dear friends, even if no one is showing you any love this weekend, do something special for yourself.  Watch what you want to watch on tv, take a bubble bath, curl up with a good book, listen to your favorite tunes or take yourself out to dinner (or my favorite, buy yourself those pretty flowers).  Just know that in the world of chronic illness and chronic pain warriors you're not alone.  We stand together and that's a lot of love.  Love and blessings to you all. 

Blizzard Watch

BLIZZARD WATCH!!!!!!!!  If you live with chronic pain those words almost sound like a death threat.  Between the cold temperatures, the wind, the snow and the low pressure my body and those of my chronic pain suffering friends just want to crawl into a cave and hibernate.  My body has always been able to tell me when the weather will be a certain way or when the season will change.  Some people think that's weird but it's really not.  Migraines flair with weather changes whether they are allergy related or pressure change related.  Your joints might ache when it gets damp outside.  If you have deep scars from surgery they might warn you of impending storms (I have one of those scars and so did my father.)

Read this article from WebMD to find out more information about what your aches and pains (and chronic pain) have to do with the weather:  Weather and Joint Pain

I will tell you one thing that is odd for my personal situation.  While I hate winter weather and can't wait for the day when we move south what I hate even more is being closed up in the house with the heat on.  I feel completely claustrophobic.  Since I have terrible claustrophobia and need to get out of my house I will go outside in snowy weather and shovel the snow.  I know that is the worst thing I can do for my body but I need the fresh air.  I hate indoor heat.  I also hate feeling closed in.  Talk about anxiety producing!!!! Not a fun situation.  Needless to say I'm not looking forward to this weekend.

So my friends, if you are a chronic pain warrior like me what are your plans for the blizzard?  If you are not a chronic pain warrior but you love one what are you going to do to help them get through this nasty weather time?  If you are lucky enough not to be in any of those categories how will you spend your weekend?

(I am planning to work on my Scandinavian Snowflake afghan.  Yes, while everyone else is running to the grocery store -my husband and daughter have already done that- I will be running to the craft store for more yarn.  That's my blizzard must have.)

Love and Blessings to all of my chronic pain warriors out there.

And I'm Back...

So, I've discovered that it really is hard to keep up a blog.  I think about things that I want to write on here rather frequently but between trying to function at my job (which, yes, I've returned to full-time), take care of my home and family (even though my kids are grown and live away from home they still need their Mama), doing some things that I do for fun and getting the rest that I need there's just no time left over.

Since I was last here I've gone from having a dog (dogs plural in the past) to having a very sweet little cat.  He's a rescue but I believe he rescued me.  I also think he's a dog in a cat suit since he's snuggly and prefers to spend his time on my lap.

I will say that he calms my anxiety a great deal.  He makes me feel better when my body wants to give up and he welcomes me home at the end of the day with lots of meows, love and warm cuddles. 

I've also become a mother-in-law.  That is a real change in my life.  A new daughter to add to the tribe.  Of course it meant a lot of travel for the wedding and before and now to see the young couple.  Travel, of course, is not a treat for someone with fibro, MCTD or gastroparesis.  Somehow I manage to survive the day trips to see them since they don't drive.  

On the medical front I've had my ups and downs.  My gastroparesis flares at times and I have had to change nausea and pain meds.  Thankfully the new meds are better.  This disease is a constant learning process because it changes day to day and is never consistent.  It's no wonder my anxiety is bad so much of the time.  

My joints and muscles scream at me regularly.  Some day there might be a cure for fibro but probably not in my life time.  This is a wicked disease.  Sorry, I can't call it a syndrome.  I have to live with it and the medical folks don't.  If they did they would call it a disease too.  Having MCTD on top of it makes it much worse too.  The lupus part of that rears its ugly head more often than I'd like to see it.  My hands really take the brunt of it but I manage.  Somehow I still use the computer and still crochet..  I'm just slower than I used to be and I have to take more breaks.  

My blood pressure isn't being my friend either.  You know the old saying, "If it's not one thing it's another.", well for me they just keep piling up and my blood pressure is just the most recent.  For some unknown reason it has decided to go up.  I know it's been an insane week but I really didn't need that too.  

Well, it's time to close this entry.  Maybe I'll get better at this.  At least I have a three day weekend coming up so maybe I can get some rest.  I'm wiped out. Good luck to my chronic pain buddies.  Stay well and stay warm in this cold weather.  Blessings to all of you.