Sunday, February 9, 2014

To share...or not to share.

When going through a very personal battle, a big part of that battle is whether or not to share it with others.  First question is whether or not to share it at all.  Second question is how much information to share.  Third question is who to share it with. 
When going through something that others may be uncomfortable dealing with, it makes those questions even harder to answer. 

I have a medical condition that is chronic, there is no cure for it and treatment for it is unreliable at best.  It is extremely painful (in fact it is listed on several medical sites as one of the top 10 most painful conditions) and the pain can be debilitating and cause even basic mobility to be a struggle.  Sometimes sitting, standing AND laying are all painful for me...all at once. 
On top of that, this condition is embarrassing and depressing.  It is something that may disgust others, although it is not an infection and it is not contagious.  It is an autoimmune type condition. 
It is horrendously difficult to not end up depressed and angry because of the changes it makes to my body, the limitations it puts on me and the almost constant pain it causes me to endure. 

Even as I'm typing this, I still haven't fully decided if I'm going to disclose within this post the name of this condition.  I can count on one hand the number of people who I have discussed this with and 4 of those 5 people have only found out within the last few months, yet I have been battling this illness silently for approximately 10 years.  It has progressively worsened over the last few years, which was what caused me to reach out and get an official diagnosis and to tell those that are closest to me about what I am struggling with. 

As I finish up what I knew I wanted to talk about, I still haven't reached a conclusion about whether to share my actual diagnosis with the world.  So, because I'm not certain I am not going to post it in here. 
I will however share it personally with those who want to know.  So long as you approach it with compassion and an understanding that while this may be an unpleasant thing sometimes, it is not something you can catch by being near me.  That is my biggest fear with sharing this with others.  I don't want people to look at me differently.  I don't want people to worry about touching me (because I am most definitely a hugger...I love me a good hug!).  So, if you can understand that, then you can message me privately if you want to know more about this.  But keep in mind, that I may tell you that you are not somebody I want to share this with.  This is a very personal battle.  So, if you are somebody that feels close to me, feels that they could provide me with support during this, then please feel free to reach out.  

The main reason I wanted to share this with everyone is I want everyone to understand me.  In addition to my fibromyalgia, I am also battling this.  So, please don't take it personally if I only make tentative plans with you or if I end up cancelling or backing out of plans.  I don't want to be a hermit or a recluse, but when I am in extreme pain, I need to remember my own limitations or I will suffer even further.  

Sunday, March 17, 2013

March 18th...

Tomorrow I will go to work, life will continue on as it should.  But my heart will be a little heavy with a memory I hold so dear.  10 years ago on March 18th, 2003 I was having a long and strenuous day.  I was poked and prodded and interviewed by doctors and counselors.  I spent the day being evaluated to be a living kidney donor for my dad.  But the significance of that pales in comparison to the fact that what I hold on to about that day was that it was the very last day I spent with my father before he succumbed to complications of his disease.  I remember vividly when we had a break for lunch that he sat across the table from me, smiled and said "I am so proud of you".  
That was the last time I heard his voice, the last time I saw him smile and the last time I felt the warmth of my fathers hug.  It has been too long and I miss him so damn much.  There are two more dates that will be hard for me, so bear with me in the coming weeks as I try to comprehend that I'm only 30 and my father has already been gone from me for a decade...

Monday, November 26, 2012

The 6 week wait is over...

Appointment went "okay" today.  I was a nervous wreck beforehand and actually sat in my car wanting to just turn around and leave before I even went in.  I had waited so long for this appointment, but here I was, barely functioning due to anxiety and not even wanting to continue on.  I was freaking out.

How do you tell somebody who you've never met exactly what you're feeling and how do you sum up a long history of chronic pain and symptoms into one appointment?  I wanted to make it obvious to him that what I am feeling is no longer acceptable to me and make sure he understood that some days, the severity of my pain makes me want to just curl up into a sensory deprivation hole to escape it all.  Yet, I didn't want to seem over dramatic or "seeking".  Being in the health care industry myself, I know that a lot of chronic pain sufferers get labeled with that before they are even given a second glance.

He did seem receptive to me, but failed to actually give me a diagnosis.  Although he did say that he feels I present with what is likely fibromyalgia.  He wants to check, guessed it...more lab work.  Fibromyalgia is a diagnosis of exclusion, since there is no definitive test for it.  Plus, it would also be considered irresponsible to not test for those other things, when there could be something else going on that would require a completely different treatment plan.  

He was also fairly concerned that the area of my most severe pain (the place where the pain is constant, unrelenting and most intense) is my neck/shoulders/upper back.  He had me do some x-rays to ensure that there isn't also degenerative disc disease.
So, I should hear back in a few days about my lab work.  If it all comes back unremarkable, then I suspect I should get the formal diagnosis.  
In the mean time, he wants me to increase my Lyrica dosage.  I've been tolerating it without side effect, but relief has been just out of reach.  

Unless there is a problem, I'll be seeing him again in 2 months.  

Tuesday, November 6, 2012

No hoop jumping today!

4 weeks ago when I went to my primary care provider to address my pain and the fact that I thought I have fibromyalgia...I was expecting multiple hoops to have to jump through before I'd be able to find myself on the right track.
Luckily, my PCP knows my sister and knows her fibro struggle. So, she was quick to agree with me on my self diagnosis. She promptly gave me a referral to a rheumatologist to get more personalized/specialized treatment.
She discussed with me starting a medication prior to my rheumatology appointment as they typically can't get you in for a while (she was that point it was a 6 week wait). She knew that I wouldn't get insurance to cover Lyrica (the med most likely to give me relief) right away without trying something else first. So we started me on gabapentin (generic neurontin). She then wanted to see me after 4 weeks. Well, it hasn't gone well. I have had absolutely NO relief while dealing with multiple unpleasant side effects.
So, I had an appointment with my PCP today. I was expecting to have to beg or jump through hoops...but luckily I did my research AND my PCP is awesome. I was able to look up Lyrica with my insurance company and found that they will cover it if you have taken gabapentin within the prior 12 months. I informed my PCP of this and she immediately was on board. She basically said, why mess around with something else when this is what will likely help, especially since my sister has had good relief with it.
She she prescribed it and I was happy that my research was right and when I arrived at my pharmacy to pick it up...I only had to pay the co-pay!!!

I am actually finding myself feeling truly optimistic. It is good timing because by the time I see the rheumatologist I will be armed with the knowledge if this med is working or not...but it gives us a head start.
So keep your fingers and toes crossed that after years of suffering in silence and now 4 weeks of suffering out loud, I'll finally have some relief.
I know my husband will appreciate it too...nights like last night are hard. When I am in so much pain that I'm crying and untouchable, he has a hard time dealing with not being able to do anything to help me. Hopefully he won't have to see me like this for much longer.

Wednesday, October 17, 2012

Awareness and side effects...

So, it's been 10 days since my "coming out" post in which I finally shared with the world what I've been going through.  It's been a very strange, very trying, and very difficult 10 days.  
I'm not sure if I'm just allowing myself to be more aware of what I'm feeling or if it was the emotional stress of finally talking about all this, but these last 10 days have been some of the most exhausting and painful days I've had.  Maybe it's a combination of those two factors.  

The one thing that's still requiring a conscious effort is talking about what I'm feeling.  I've been so quiet about it for so long, that the silence became a habit.  Even with my husband, who'd I'd been keeping in the dark about this as well.  I know that it's a good thing to share with him how I'm feeling, but I worry that over time he'll get sick of it or that I'll come across as a whiner.  Now, I know that's all in my head because my husband is AMAZING!  

Everything I've ever gone through...from the death of my father, to complications following surgery to remove a benign breast tumor, to my major car accident last year...He has not only been right by my side, but he has helped to carry me through it all.  And this is no different.  He a long time ago, referred to us as "Team Westman" and that stuck...and this is how he approaches everything.  He, over the last 10 days, has been consistently telling me that what I'm going through...he's going through it too, that my pain is his pain.  I know he means it.  
But, my self conscious self...tells myself that he doesn't want to hear it, that nobody does.  I'm really writing this all more for myself than any of you that may read it, because I know in the end...Most of you will either stop reading from lack of interest or from being sick of me.  

But I AM trying to make an effort to talk about it.  Whether it's my husband, my mom, my sister, my friends, my co-workers...I am not wanting to be quiet anymore.  But as I'm talking about it, it feels weird and foreign.  But I'll keep talking anyways, because it is helping me and in the end, that's what matters.  

And then I've been dealing with the fun issue of a side effect of my new medication...fatigue.  When my PCP told me that was the main side effect of it, I thought, "Oh, whatever...I'm already fatigued all the time anyways".  Oh man...what do I know?!  
The first few days after starting the med, I was fairly fatigued, nothing horrible but definitely more than my usual.  Then Monday night, after a week of being on the med, I increased my dose per the instructions from my PCP.  Yesterday, I was so out of it with complete fatigue.  I slept WAY later than I usually do AND I took a 2 hour nap in the middle of the day...neither of which helped at all...still felt just as fatigued.  Today is a little bit better.  I slept a lot later than I would have liked, but I'm not feeling the need to nap right now.  Although, the multiple cups of coffee may have something to do with that.  :-)

Well, I am going to happily go enjoy a scary movie with my sister this afternoon, then going to make a yummy comfort food for dinner (goulash!!!).  Wahoo!


Thursday, October 11, 2012

Just a little update...

I only got to do a quick status update via Facebook on Monday after my appointment, so I thought I'd to a little update on here to catch up those of you that are interested (and obviously if you are reading this...You are probably one of those people).  

So, my PCP (primary care provider) agrees with my thinking that I have fibromyalgia.  Most PCP's don't manage this condition, so she immediately place a referral to a rheumatologist.  A rheumatologist primarily deal with conditions/diseases involving joints, soft tissue, connective tissue and autoimmune disorders.  
The problem is...for a first time visit/consult, there's a long wait to get seen.  My appointment isn't until November 26th...which is 46 days away.  With as long as I've been in pain at this point, what's another 46 days, right?  WRONG!  Once I made the decision to deal with this and move forward, I was ready to get this under control now!  Plus, the struggle I went through internally to decide that what I'm going through really DOES matter has been an emotional one for me.  So, I've been even more exhausted and strained this week then I've been in a long time.  Plus, after two really rough days at work of absolutely no down time and stress levels through the roof, I spent last night on the couch barely moving.  So, this 46 day wait seems terribly long to me right now.  

Luckily, my PCP was willing to at least get the ball rolling for me.  The primary medication for treating fibromyalgia these days is Lyrica.  My sister who also has fibromyalgia has had a lot of success with that medication and I was hoping (and still am) that was the route we would go.  My PCP explained that what she's seen however, is that because Lyrica is still brand name and very expensive that most insurance companies won't cover it until you've tried and failed other treatments first. 
So, we started me on a medication called gabapentin (Neurontin).  She's starting me on a standard dose and I can step up as needed on a week by week basis.  Then when I go to see the rheumatologist next month, we've at least tried this med.  If it works, then GREAT!  If not, then we've tried it and can move on.  

I've only been on it since Monday night and haven't noticed any changes yet, but I'm still holding out hope. 
So, for now, that's it I suppose...Until another day.

Sunday, October 7, 2012

Being silent...

I will start this post with a poem I just felt compelled to write and will follow it with an explanation of why I feel compelled to do this now.

Being Silent
Being silent all these years
Doesn't mean I didn't shed any tears
Being silent all the while
Hiding behind my deceptive smile

I allow myself to continue in silence
I continue to perform this act of defiance
I tell myself that I'm just fine
But in reality I'm starting to decline

I carry with me this silent pain
In such a way that I can't sustain
I tell myself that it's not real
That I just need to carry on and deal 

I see so many others who suffer
I tell myself I just need to be tougher
I allow myself to diminish what I'm feeling
But that will just delay my healing

So hear I am ready to confess
That my body and soul are in distress
I now move forward with fear and doubt
But silent no more, I'm ready to shout.  

I don't even know where to begin, but let's begin with...I'm in pain...all the time.  I'm a champion at denial.  I've done it for most of my life, so why is this any different.  I can't even tell you when my pain started, it's been going on for that long...and I'm only 29.  
I do know that the reason I haven't done anything about it is that (in addition to just straight up denial) I tell myself that other people hurt and suffer more than I do, so I can't truly have something wrong with me.  Other people have more pain, aren't able to function as well as me...So it must not be as bad as I'm making it out to be.  

6 years ago I was diagnosed with hypothyroidism/Hashimoto's disease.  Hashimoto's is an autoimmune disease where my body attacked they tissue in my thyroid, effectively killing my thyroid and causing my hypothyroidism.  The biggest symptoms of hypothyroidism are (but not limited to) joint and muscle pain, dry hair, dry skin, dry nails, depression, brain fog (feeling like you are lost in a mental fog), fatigue, etc.  
I thought, "wow, now I know why I feel so awful all the time".  I began a long process towards finding the right dose of medication for me.  This is a medication I will have to be on for the rest of my life as my thyroid no longer makes the hormone needed to regulate my metabolism and many of the body's basic cellular functions.  I eventually received a referral to an endocrinologist to manage me as despite dose increases...My lab work and symptoms were going the wrong way.  Eventually we got me on the right dose and some of my symptoms went away.  I was definitely happy about that, but was upset that not all went away. 
I immediately went into research mode and wanted to know why.  What I found out was that with proper medication management...ALL symptoms of hypothyroidism should resolve..ALL SYMPTOMS!  So, why have I been suffering continuously with the remainder of my symptoms.  
I went through thinking, well maybe this is just my life...I'll just have to deal, to researching every condition out there until I became so exhausted and frustrated that I quit.  

All the while, I know I should have just gone to see my doctor.  Something obviously was wrong. 
I hurt, everywhere, all the time...without respite.  I take over the counter meds, I try heat and ice therapy...thinking that one of these days, I'll feel good.  
I avoid the doctor trip thinking, it's just not that bad...I can still function.  I go to work, I partake in my hobbies, I am able to enjoy fun activities and spend time with my family and friends.  I diminish what I'm feeling because I am constantly comparing myself to other people...I need to stop doing this because what I'm feeling is beginning to overwhelm me.  Both it actual pain and in the aspect of consistently telling myself that my pain isn't as bad or as important as other people's.  

So, I took the step that I've been most afraid of.  I made an appointment at my clinic for tomorrow morning.  I can't keep going this way...I just can't.