That's what friends are for.

Last night was Vagina night.  The girls gathered as we usually do on the usual patio and enjoyed our weekly visit.  I asked about my blog.  I knew at least one of the ladies has been reading it, but I was curious how I was doing, and getting perspective from people who know me well enough to know I don't want smoke blown up my ass.  I wanted an honest opinion.  They gave me some good input and I was pleased to hear that the overall impression was good.  During this conversation things turned a bit with one friend.  She said that she felt that I wasn't a good friend because I didn't share my feelings about my pain and the struggles I go through every day with them every week when I go to Vagina night.  She felt that I was holding out and therefore didn't value the friendships we all had enough to share these things.  Now I am saying how I interpreted what she said, but that is the condensed version of what was said.

We all have at least one friend that only calls on us when they need something, or is always negative.  That friend that we wonder why we are friends with them at times.  Who wants to be the sounding board for constant negativity or the constant support system?  Yes friends are there to help us, to listen to us, to support us, to be there in the good and bad times, but when there isn't a balance it devalues the friendship (in my opinion).  I do not want to be that friend.  Yes I have issues. Who doesn't?  I do share things when I'm having a particularly rough time with my children, work, boyfriend, or something unusual in my life.  Generally, however, I am a pretty private person.  I have maybe 3 people in my life that I share almost everything with.  1 is my sister and 1 is my boyfriend, otherwise I'm not a open person about things I feel are close to my heart.  That being said I don't even talk about my pain issues all that much with my sister or boyfriend. 

I guess this comment really got under my skin.  I don't think it was said in a cruel or attacking way, but it was said in a way that my friend was hurt that I didn't "trust" her enough to share constant pain with the group and her during our weekly venting sessions.  I guess the reason I decided to actually bring this up was to try to explain what I choose to keep to myself and why.  I have thought about it almost constantly since last night.  It literally kept me awake thinking about it.  I value my friends more than they will probably ever realize, and that my lack of sharing is taken personally in a hurtful way disturbs me.  Probably mostly because my introverted private ways aren't going to change.

I have other friends with chronic illnesses and yes we occasionally have a sharing session about these illnesses, but I think most of them would agree that having that illness be a regular topic of discussion is just not desirable.  We deal with these issues 24/7/365.  When we venture out on a good day we want to escape that. We don't want to whine about it (usually), we don't want to dwell on it, we don't want to give educational seminars on it.  We want to enjoy a night away from it. 

I think part of the reason I decided to do this blog, beyond camaraderie with other PA patients, was to let people have a glimpse in terms they can understand into what someone lives with when they have a chronic illness.  It is hard to empathize when you have no point of reference or personal similarity.  So yes when I am out or with my closest friends I am not sharing my day to day challenges, but I hope that you will read this and be able to understand why I don't want to talk about it all the time.

To my friend, I'm sorry that you have been hurt by my lack of openness over the years.  It is not a reflection on how I feel about you, our friendship, or my level of trust in you.  You have been a great friend to me, and I enjoy our friendship.  I promise that if a day comes that I truly need your help I will call you.  I promise if there is something in my life that I need to talk about I will share it with you.  I will however continue to be a private person.  I will continue to be as positive as I can be.  I will continue to not dwell on the negatives of psoriasis, psoriatic arthritis, and pain the majority of the time.  This is how I am able to function and live the best life I can.  This is how I keep my sanity.

Thank you for being my friend.  You and all the other Vagina ladies are my rocks even if you don't realize it.  I love you guys!

Happy Birthday!

Tonight we went to celebrate my friend's 30'th birthday.  I honestly don't remember my 30th.  Not because it was a wild party, but because the party way so lacking.  At any rate I'm drunk blogging.  Just to have full disclosure. 

I have 2 friends who were at the party tonight.  One has RA and one has psoriasis.  Seeing these friends always reminds me of the fact that I am not alone in my predicament.  My psoriasis friend is fairly new to the diagnosis.  Over the last year we have discussed some of the early treatment options and all of them have a scary side.  It's always hard to grasp that the treatment can actually be worse than the cure.  That is the reality with many of the auto immuno disorders. To find relief you have to gamble something else. 

The RA friend always amazes me.  I see her and know  that as hard as my day is her's is probably worse than mine yet she's always an advocate for the possible.  I aspire to have that level of aspiration for helping others. 

We   usually run into each other at these types of functions.  We all live in a very small world.  I guess the theme for tonight's brief blog is I'm thankful for my friends.  These two especially lately.  Misery does love company, but not because we all love to be miserable.  We love the empathy because it means in the dark despairing world of immuno dysfunctional disorders we are not alone.  There is someone out there who gets it.

And so roller coaster ride begins

Tomorrow is my day to take my second Humira shot.  I noticed this morning that my big toe miracle is becoming less miraculous.  There is a patch of psoriasis redeveloping.  My toe was so pretty for a few days there.  The psoriasis in other areas that were improving have started getting worse again as well.  I have started noticing some of those fun side effects as well.  My hair is falling out.  I have been blessed with really thick hair, but it is still disturbing to pull out hand fulls of hair when I washed my hair this morning.  I also feel like I have been eating glass.  My mouth feels raw, similar to having eaten pizza when it's too hot, but all over my gums, tongue, and the flesh inside my mouth.  Luckily it's not ugly cold sores though.  I have a few spots that feel like blisters in my mouth, but I can't see them.  Then there's the insomnia.  Being a long time insomniac it's hard to say if this particular rearing of the ugly head of sleeplessness is a side effect of the meds or just the occasional bout that I have every few months.  It's hard to overlook the timing though.  It also seems like I have to pee a lot.  When I finally do fall asleep I feel like I'm up every hour for a trip to the throne.  I have diabetes in my family so when I first started noticing the frequent urge to pee I went to get my blood sugar tested and it was A OK so it's not likely I've developed the family curse, at least not yet. On top of all that I haven't noticed any improvement in my joint pain.  If anything it's worse.  That in itself isn't unexpected.  All the other immuno suppressors have caused me a flare after I started them.  Remicade made me flare every time I got an infusion the whole 5 years I was on it.  It is just pretty hard to see the light at the end of the tunnel when the great miracle is fading and I am in constant pain.

Oh the fun roller coaster of drug side effects.  I'll be calling the Rheumatologist tomorrow to see if I should take my shot or hold off.  I will be pretty pissed if I can't use the $2500 worth of medicine that is residing in my fridge.  Plus I'll be pretty irritable that I've been abstaining from my Jack Daniels and Diet Coke enjoyment for over a month now.  After not drinking for the better part of 5 years besides on special occasions I've come to enjoy my adult beverages a few times a week, and I kind of miss the whole experience of it.  Even a glass of wine at dinner would nice, but to give this medication a fair shake and not take any chances of causing more damage to my liver I've abstained since I decided to give Humira a try.

OK I think I'm done with my little pity party for now.  Today's positive note is that Wednesdays is vagina night!  I got to spend the evening with my closest girlfriends.  I missed last week thanks to the attack of the file moving episode.  I have some amazing friends.  The core group of 5 of us span 2 decades in age, but share 8+ years of companionship, ups downs, fun, sadness, and have made a commitment to spend time together almost every week.  So happy Vagina night!  If you have a vagina I hope you are blessed with other special vaginas to share your life with.  Nothing compares to good girlfriends except for maybe good girlfriends drinking wine.

April Showers bring May flowers, but it's August!

I am one of those people who are sensitive to atmospheric change.  This means that when storms are building my pain levels increase the more they build.  Usually I dread spring because in DFW we are  bombarded with storms.  Somehow this year it seems like storm season started early and it doesn't seem to be ending.  For 2-3 days now we've had sporadic storms.  They are all around us.  This means the arthritis is constantly flared up.  Being it is now a few days into this I am starting to get worn down.  I try to stay positive about things.  Tell myself it will get better soon.  Practice my deep cleansing breathing techniques.  Count down the minutes at work till I can get home to take some pain meds.  This also leads to my inner worry wart rearing it's ugly head.

I am realistic that I have a limited amount of time that I can continue working, at least in my field.  I had hoped I could make it about 5 more years to get my kids through college and pay off my car.  Days like today I can't imagine making it through the year let alone through 5.  I also don't know what I want to do when I grow up.  I've had a good run as a Metrologist.  I'm good at what I do.  I am just very aware that every year I am more and more limited of what I can do.  The stiffness in my hands impedes my ability to do many things already, lifting things is difficult and aggravates my joints, and just getting out of bed to go to work is challenging most days and just not going to happen more and more frequently.

I am fortunate that I am a service connected disabled vet.  No not fortunate in that I got hurt in the Army, but that I have options.  I have the option of using vocational rehab through the VA, but what is it I want to do?  What can I do that I won't hate, that I can make a living at, and that I will continue being able to do as my condition worsens.  So many questions to swirl through my pain overloaded brain.

After it's all said and done and I waste hours and days worrying I remind myself that worrying is just that.  A waste of time.  I can't control the progression of my arthritis, I can't control the future.  What I can do is be as productive and positive today as I can be.  Remind myself of my blessings.  My loving and supportive family, a boyfriend who treats me like a princess even when I'm the evil witch, a good job in this horrendous economy, and a sharp mind even on days it likes to throw all the worst case scenarios at me.  I am blessed today.  What tomorrow brings will continue to be a mystery and an adventure.