Monday, November 28, 2011

The Hap-Happiest Season of All...

I was tempted to title this post “Winning,” but just couldn’t do it.  Since I last wrote, my diabolical plan seemed to have worked!  Completely ignore being sick, to actually cease being sick.  
The past few months have been great.  I have felt great physically and mentally, which I have learned is equally if not even more important.  The incredible thing, is that what I had felt, was being miraculously mirrored inside of my body.  
Just a couple of weeks ago I began a series of appointments to prepare for a important check in with my rheumatologist.  This appointment would determine if I could begin the journey to switch to a safer, long-term medication to control my myositis.  My first appointment was the super fun 2 hour session in the MRI, the next was a blood work series - that’s no big deal.  It was the 2 letters that came the following week that had me speechless (I know!) and in tears.  Ready?!  There is absolutely NO muscular inflammation left in my body.  My counts had finally dropped; several into normal ranges, even the never-going-to-change ANA* dropped 2 entire levels!!!  That means that there are less antibodies around in my body - that’s good!  I can feel this, too.  I can blow dry my hair without having to drop my arms and rest.  I can run up and down the stairs without a second thought.  It’s amazing.
My mind is a whirlwind thinking of all the things that must have been going on in my body the past year; our bodies are truly the most incredible machine. 
So what happens next?  I just started my 6-12 week “side effect trial” of Hydroxycloriquine, or Plaquinil, an anti-malarial drug that has been found to more safely treat several auto-immune diseases more long term.  Watching for the possible side effects is a little daunting; Week 1: gastrointestinal [oooh, that sounds like fun], Week 2-4: rashes, Week 4-8: hair loss.  As much fun as the aforementioned sounds, I am excited for the idea of moving to a safer drug.  And yes, I could become pregnant on this medication.  
I am a little scared about switching though.  Amazing things have happened over the past year on Methotrexate.  What if Plaquinil doesn’t control the disease and I move backwards?  I guess that’s why I’m doing this now; I’m still on medical leave, now is the time to discover how to be healthy long term.  Hoping that this medication is kind to me and that I can have success with it.  
So why did I sort of want to call this post “Winning?”  I has been a fun month!  Not only did I get the incredible news about my health, but I had a couple other mood boosters as well.  I took home my first win at VINGO night (Bingo at the local VFW) - which was just as great of feeling as I had always imagined... Haahaha!  Topping even that victory, the Holzingers finally took home the Golden Bean Trophy at the 4th Annual Chili Cook-Off (an event that we hold with our college pals).  
My little Pronto Puppy has been feeling great too!  His liver values have come down, considerably.  He was able to discontinue taking Prednisone and has been bouncing around the house like a pup again!  We are so excited to see him feeling better!  

So much to be thankful for this time of year and always!  I am so grateful for all the love and support from my wonderful family and friends!  A joyous holiday season to you all!
Will check in again around the New Year!
Much love, 

* ANA = Anti-nuclear antibody - which indicates an auto-immune disease is present in the body

Wednesday, August 10, 2011

Greetings from August!

Hi there, 
It's been a crazy couple of months!  I haven't been writing because I'm convinced that I'm fine and haven't wanted to return to the "sick" talk.  The word has actually been banned from my vocabulary - however I might have to use it a couple times here.  
So, I'm feeling great!  I was not however, ready to return to work full time though; so my position had to be released.  I'm okay with it; although there has been so much going on maybe I haven't let it sink in.  
Physical therapy continues to go well.  I'm not ready to hop on my bike yet, but I can do so much more than I could just a couple of months ago.  I can stand for extended periods and walk where I want to walk! I can be out and about for 5-6-7 hours without flaring up.  I got to see U2 in concert and danced in my spot the whole time (okay, that one landed me on the couch for the next day).
I have had a bit of heartache in July, although so much to be thankful for as well.  Anyone who knows me knows how much I love our dogs, Pronto and Rosie.  On the 4th Pronto got really ill.  He was diagnosed with an auto immune disease [just like his momma] called Chronic Active Hepatitis (CAH).  The doctors think that he ate something toxic as well which triggered the disease; so you can imagine our relief when Rosie's tests came back clear.  
His little liver is feeling better though with the help of Ursodial, Milk Thistle, Prednisone and Azathioprine - which it the same drug that I began my treatment with (except his tastes like chicken!)  We have been working with the amazing veterinarians at the University of Minnesota, where Pronto is a much loved patient.  We continue to pray for his health, and I make sure that I give him lots of the same love that he gave to me when I didn't feel good.  
Amidst all of the above, my grandmother passed away.  She became sick on July 11th and was gone the 17th.  We were lucky to have her here for 97 years and she was adored every minute of them.  I am beyond blessed to have had her in my life.  I had the pleasure of celebrating her life earlier this week with all of my family.  My heart is so full of happiness, love, and truly special memories.
As for me, just today I increased my Neurontin to 6 pills a day.  Previously, I was taking 4 at bedtime.  Now I will take 3 in the morning and 3 at bedtime.  I did feel a little sleepy this morning...but I might just still be a little tired from being out with my cousins on Monday night!
I head in for a check in with my rheumatologist tomorrow.  Per our last visit, she mentioned wanting me to stick with the Methotrexate (MTX) for at least a year before switching me to Plaquenil.  November marks one year of MTX, so I’m pretty pumped to think that I might be done giving myself the weekly injections (which oddly seem to be getting more difficult to give myself) in the near future.
As mentioned, I'm really working on living my life without a thought of the diseases that grace my medical records.  I'm completely sick of "being sick."  So I'm not anymore :-)    That’s it.  I couldn't be happier about it.  Having said that, I'm officially on vacation from the blog!  No news is good news!  
I’ll check in from time to time, but in between notes, think of me feeling great.  Still learning how to live with the little things here and there that make my life just a little bit different than it once was, but shifting the focus from a life that revolves around a disease to a disease that fits into my life.  Pronto’s working on this too, so I have a buddy :-)
Lots of love and thanks to you, 

Sunday, June 26, 2011

Checking in!

Hello friends, 

It has been a little too long since I have posted an update so here we go!

I am excited to report that I have been making big strides in getting back to my old self.  I am up to being out and about for 3-4 hours without flaring up.  With each small increase in time, I have had to learn a little bit the hard way, but it has been worth it.  I am also getting used to the modifications that I learned at Mayo to make the most of the time that I have both in and out of the house, and also to prevent flares.  

I have been in physical therapy for almost 3 weeks now.  I have had a little trouble with pain in my hips; but other than that, it's going great!  Still having a hard time standing for extended periods, but stairs are no longer a problem and I don't think twice about missing a close parking spot!  I can't tell you how good it feels just to be moving around.  I danced at a friend's wedding last night, and I even wore heels for the first time in probably 8 or 9 months; so great!  

I am pretty wiped out today; but like I mentioned, it's worth it!  There is really nothing like being out and "feeling" like everything is fine.  It's so great just to have fun and not worry about being sick.  I honestly am believing that I'm not, which may be my most powerful weapon.  I don't even want the work "sick" in my vocabulary anymore, I've moved on! 

I check in this coming week with my regular Dr. to see if she still wants to increase my dosage of Neurontin.  If she thinks that we can stop, than I'm closer to being able to possibly switch from Methotrexate to the much safer Plaquenil.  Even though I hate taking my shot each week, I am really anxious to stop the MTX since it has been making me get better.  I would imagine that I will continue to be watched closely whenever we do try to make a switch, but I do have my concerns. 

So, the real test to see whether I over did it or not at the wedding last night will be if I am still wiped out tomorrow, and even possibly the next day.  I have a good feeling though.  In the past when I have done too much, I felt really rotten then next day, whereas today I just feel tired.  Fingers crossed!

Looking forward to some sunny weather this coming week!  Safe travels to those cabin-bound for the 4th!  

As always, thank you for all the positivity and prayers; it means the world to me!  

Wednesday, June 8, 2011

Starting Physical Therapy


Just a quick note to let you know that I have been cleared for physical therapy by my Rheumatologist; first day is tomorrow!  I'll be working with the Sister Kenny Rehabilitation Institute.

Now that the MRI's show that my legs are better and that my arms are close behind; I'm ready to build back strength at a more aggressive rate.  Since the disease is in a "retreat" state, this is the perfect time to begin building back up the muscle tissue that was damaged and/or killed.  The disease does whatever the hell it wants, but having more strength will help me to face flares as they might present themselves in the future.

How I have been feeling and what the recent MRI confirmed: I have been able to walk quickly up the stairs without pain and without muscle fatigue.  My arms still get that "exhausted" feeling, but not nearly as bad as it was just a month ago.  It's truly amazing.  Today I held my girlfriends baby for about 5 minutes and didn't even bat an eye.

Although I still flare up, the days in between continue to increase and my attitude is right behind it, which is worth more than you know.  I'm pretty pumped for PT.  To me it's another big step in getting back to my old life.  

I'll keep you posted on how it goes tomorrow!

Thursday, June 2, 2011

Best News Yet!

I am so happy to report my good news this morning!

MRI and lab results from the past two weeks are back.  After five months of the Methotrexate my thigh is nearly "normal" showing little inflammation and no muscular edema.  My upper arm is showing much improvement, still showing some inflammation, but muscular edema only in the triceps.

My LDH also came back looking more normal.  LDH measures blood sugars and also inflammation - when elevated it can signify that there is a severe muscle trauma and tissue damage.

I think that I'm in shock!  Maybe I'll even get to switch off of the MTX and onto a safer drug in the somewhat-near future!  We had discussed beginning physical therapy once the inflammation went down.  I am going to get back to myself!

Oh boy - my mind is all over the place!  I just can't believe that so much has changed for the better.  There were so many times that I felt like this would never be a reality; I am so full of gratitude.  I am so thankful and so relieved.

More soon!

Love to you all!

Tuesday, May 31, 2011

Starting to feel better!


Thought I better post an update before I set myself up for a lengthy one!  

I have been feeling better!  I feel more like myself.  Some people tell me that I have color in my face again, I say it must be the self tanner; either way, I don't look or feel as lifeless as I did just one month ago.  I like that!  

I've been able to get out a little more to see some friends and family, which has been great.  Still tough to get out later in the day, but I'll take whatever I can get.  It's nice to feel like I'm a part of the world again.

I am also happy to report that little by little, I'm starting to get my appetite back.  I put down a cheeseburger last night and it was good!  I am also up to a 5 minute walk.  My enthusiastic walking buddies, Pronto & Rosie are enjoying being out and about just as much as I am.  Although I won't be starting physical therapy for a month or so, we are going to attempt to get the pilot light lit in the pool for the first time in 8 years so I can wade around a little.  

Last Friday, I increased the Neurontin dosage to 300mg at bedtime.  I was pretty tired this past weekend, but it also rained the entire time - so who knows.  I have actually been sleeping, which is amazing.  I wake up a little here and there, but the difference has been truly remarkable.  

My guess is that within the next week and a half, that my "tired" feeling will pass, and then as I increase the Neurontin dosage again - I'll be tired again.  I think that the Mayo was right in that Fibro can increase medication sensitivity.  We'll have to see if this pattern repeats itself. 

Last Thursday I spent 2 1/2 hours in the MRI tube, which was not awesome.  This time I had thigh and arm scans, then thigh and arm scans with contrast being pumped in via an IV.  When I told Brad after the appointment, he was most shocked that I made it 2 1/2 hours without having to pee.  I too, was impressed.  Much improvement in many areas, you see.

I am really anxious to see what the MRI results are.  Apparently the contrast will show the Myositis activity in the tissue more vividly.  They did take the images in both settings though, so there will be a lot to compare.  The last MRI was in December, right before I began taking Methotrexate.  No improvement had been shown at that time, so it makes me even more excited to see what they look like now!  

When I met with Dr. Grandits (Rheumatologist) two weeks ago she made a comment about the activity in my muscle tissue being the "worst case" which shocked me.  No one had ever said that to me before... probably a good thing.  She'll be following up with the Mayo Dr.'s to see what their thoughts are on my tissue damage versus the blood work which appears to be normal.  This is great since that is the reason for my feeling frustrated upon leaving Mayo the last time.  I still needed answers.  More on that soon, hopefully.  MRI results too, as soon as I have them. 

Much love to you all.  Thank you for your positive energy and prayers - they're working!


Friday, May 20, 2011

Med Update...

Hi there, 

In the attempt to write when news happens as opposed to writing my life story each blog... here are some quick med updates. 

I can't sleep and I ditched the IUD because it was the most awful thing EVER.  

So, I'm increasing the Neurontin dosage to 300 mg a day, a week after upping to 200 mg.  I'm also going back to 50 mg of Trazadone and BC.  A little bummed that I'm adding medications back...but at this point, I just want to frickin' sleep at night and with the IUD, I honestly thought that I was going to die. 

I'm waking up because I'm in pain, which is annoying since then I can't get comfortable to just fall back asleep.  This is all in relation to removing the 3 times daily painkillers from my regimen.  So, we try to take more of the drugs that are focused on reducing nerve pain versus masking pain. 

I actually slept last night on 200 mg of Neurontin and no Trazadone; so I need to call my Doc back today to discuss!  I know that she wants to get me up to as much Neurontin as I can handle, but I think that I want to get comfortable on one dosage first...

I have to look all of this up... why was I ditching the Trazadone in the first place?  Okay, checked it out - I stopped taking it because I thought it wasn't working.  Ah crap.  I need to call my Doctor back.  More on all of this later!  

Side note:  if you ever find yourself faced with a medical ordeal, make sure to keep everything in a 3-Ring Binder.  Seriously, everything.  Even if your doctors are all at the same hospital - they may not have gotten all of your test results entered into the system, etc.  It's so helpful to have all records with you at these critical appointments.  This was great advice to me when all of this started.  


Thursday, May 19, 2011

Thank you...

While writing a friend yesterday, I said something that I thought I should share with all of the wonderful people who have been supporting us throughout this difficult journey.  I may have mentioned it here and there, but the importance of calling it out on its own is terribly important to me. 

Thank you.

As I start to feel a little better, I can't help but feel an overwhelming amount of gratitude for all of the support and love that I have received along the way.  On my most difficult days, the sense that I have people backing me up helps to take that first step in the morning.  

On my best days, the first things that I start to think about are all of the people that I want to run out and thank.  It's been increasingly difficult to not rush myself when there are so many people to thank.  My mind is filled with the urge to visit so many people, and play catch up on the things that I have been unable to do.  To be a friend back, and to make the effort to focus on the life of my friends and family, not this disease. 

Please know that your love and support has meant the world to me and Brad.  We are terribly grateful and love you all so very much. 

My best, 

Sunday, May 15, 2011

So much for relaxing...

After my fourth week on medical disability, I’m wondering if I have even had the chance to relax at all.  I am learning though, that I don’t think that letting go of stress entirely helps aid in the attempt to distract myself from the disease.   
I have learned a lot about myself and my condition.   I’m learning what a happy medium is; but it’s been a bumpy road.  
I think where I left last, was learning about Fibromyalgia, beginning to stretch and trying to relax.  I know that I mentioned that I was going to ignore the disease and not talk about it in an attempt to shift my life and outlook to 100% positive in the hopes that the positivity would spread all over my life and my body.  Its working; but more on that in a sec.   
I’m working on meditation, and working up to walking for 4 consecutive minutes each day.  I have continued with the daily stretching; which has been helping my pain immensely and has really been building up my strength.  I have been getting out to run an errand or two here and there, and working in our garden.  The act of getting myself ready is often still exhausting, so I feel pretty proud that I have been able to do some “normal” things once again.    
Brad and I did head out into the world last week for a birthday party.  It was really fun to see our friends.  I have so missed just being out and having fun.  We stayed for about an hour and a half, which seemed to be an okay amount of time for me.  It was the aftermath though, that was most “informative.”  
On the way home I felt “sick”; not physically but as a title.  In the weeks prior, I had been pretending that I was fine no matter how I felt.  No talking about being sick.  No one treating me any differently.  I had begun making my brain think that I was fine.  I was feeling better too.  While out, our sweet and caring friends just wanted to know how I was feeling.  And [just like the Dr.’s said] all it took was my brain hearing “sick.”  Conditions involving the Sensory Nervous System are that sensitive.  I flared up the next 2 days.  Lesson learned.  

In the day after the flare I thought that perhaps I had too much on my plate.   I ditched my strict schedule for the following day.  Bad decision.  I flared even worse, landing me on the couch for another entire day.  I realize that eliminating my plans, turned the focus back onto my symptoms.  Having a plan is the opposite of stress, it’s a healthier way to live.
I did follow my new “Flare Plan” on the worst day which was really helpful.  I continued to do my stretching, I ate as normally as I could.  I didn’t isolate myself and I did super low key things that kept me in good spirits.  I watched a few favorite shows, sorted through old jewelry on the couch, rested.  The next day, it was like the past 3 had never happened.
Please don’t think that I don’t think that you care about me.  Just please pretend with me that I’m fine.  It is the best way to help me.  Honestly, I do just want to go back to my life where I wasn’t sick, regardless of how I might feel that day.  I might never be totally pain free again, but I want to feel like it mentally.  It’s a better way to live.

I gave it another try yesterday, having brunch at a friends home.  Of course, I had so much fun and I stayed much longer than I should have.  I fell asleep for a couple of hours right when I got home, and feel utterly exhausted today.  This freaks me out because it means that I’m still doing too much, when I feel like I’m just testing the water.  So, tone it down more I guess.  A little disappointing, but I guess it’s all part of getting there.  All part of the reality of realizing where I'm really at, physically.
So, about reducing stress (this is sarcasm).  Here’s the super fast version:
New rheumatologist finally sends in forms on the last day that they’re due (more than 3 weeks after I gave them to him) which indicate that I’m fine and should be at work.  When I call to get them corrected per our discussion, he decides that he doesn’t actually want to sign them anymore.  
I tell “new” doctor to go screw himself.  I almost snap in at the end, “And there’s nothing wrong with my damn bladder!”  I then crawl back to Dr. Grandits with my tail between my legs.
I confided in Dr. Grandit’s nurse about what happened and she said the most interesting thing, “They always come back.”  I sure did.  She’s been with me this whole time and she knows my disease best.  I have met two rheumatologists that I wasn’t impressed with.  Dr. Grandits isn’t a Fibro specialist, and she’s not a friend.  She’s my Rheumatologist, and she’s a good one.  
Oh, and she took care of my forms for me.  Thank God.
In the midst of the panic, I contacted the Fibro Clinic at Mayo for help.  This is where my next revelation comes in.  I don’t know how I didn’t understand this point throughout my 5 visits there... probably because it wasn’t what I was listening for.  My primary care doctor should handle my Fibro.  What?!  I didn’t want to hear that before, but now that I had learned for myself that there really aren’t any rheumatologists that also treat Fibromyalgia, it was like fireworks went off over my head.  
I love my primary doctor!  I had just been wondering if she needed to know what was going on.  Well, now she does.  By the grace of God, I got in to see her on Thursday.  It was almost as revelational as my appointment with Dr. Amazing at Mayo.  She completely gets it.  She deals with Fibro a lot.  She’s totally in agreement with the Mayo’s recommendations.  She is and always has been a Dr. Amazing too.  Right there in front of my face.  
I guess this is one of the many reasons why you need to be able to take a step back to see the big picture.  It took a lot for me to see that I had a great team with me all along.  So glad that it didn’t take me any longer to figure it out.  Now, we can all take what has been learned from Mayo, work together and get this damn disease under control.
My primary Doctor and I talked about everything from my desire to eliminate my pain medications, to a drug interaction that Walgreens didn’t think was a big deal, but she did.  I’ll be increasing my dosage of Neurontin, which is just what Mayo’s Fibro Doctors wanted to do.  I’ll eliminate my pain medication over the next week too (since the increase in Neurontin should do the trick).  She also has been getting notes from Dr. Grandits this whole time, so she’s been in the loop.  Did I ask for that?  Who did that?  It’s amazing!!!   

She also answered the question that I had been asking doctors for months without getting any sort of answer.  Hallelujah!  I'll just skip to the answer:  birth control pills can have negative effects on Auto Immune diseases; even though you have to be on them when taking Methotrexate (MTX).  WHAT?!  So the fact that I followed my gut and went with an IUD two weeks ago was the right thing to do even though I have hated it ever since I got it and want it out.  She said to, "Tough it out, as long as you can - it will get better."  You don't have to tell me twice.  Much better than having a three-eyed baby with flippers.  I don't know why they don't just let people on MTX know that, or people with Auto Immune diseases for that matter.

So now, I just wait and that’s perfectly fine.  I have done everything that I possibly could for my disability claim and there isn't anything that worry can do to help.  I don't need to worry about not having a great team of Doctors because I do.  My Dad always says to me, “Do your very best and await the results in peace.”  I did.  I think that my new found mindfulness is rewarding me by lifting that heavy burden off my chest.  Ahhhh.  Now it's time to heal.
Maybe I am more relaxed?  The past few weeks have had their drama, but I have learned a lot from it.  I am learning how to live with my illness, but to not let it control my life.  I am in the drivers seat.  
There is so much ahead of me and so much to look forward to.  For the first time in a year, I finally feel like I’m really going to bet better.  To me, that is the hugest revelation of all.  I really believe it now, which is an unbelievable feeling.
Keep you posted.

Wednesday, April 27, 2011

No Cancer!

Hi there, me again!

Just got back from a visit to the Oral Surgeon's office.  The mass was just weird scar tissue.  No oral cancer here.  Wahoo!  

On another note, it's Spring outside!  
Things are peeking out in my back yard today...

Peace, M

Update 4.27.11 - Mayo Appointment

Last Thursday, Brad and I headed back down to Rochester for 3 more appointments.  The first was with a physical therapist who ran through my daily stretching with me and showed us how to add bits here and there to build resistance and then strength.  We’ll have to decide whether we want to continue with check ups there or move to a local PT location once I master the assignments given to me last Thursday - which won’t be any time soon.
The next appointment was with an occupational therapist who taught us lots of ways to conserve energy throughout the day.  This was really cool, especially since budgeting energy is one of the core tactics used in flares.  Since last week, I have noticed a difference in my energy throughout the day when utilizing some of these tricks!  It’s all about making things easier, not because you can’t do it, but because it can be done an easier way that won’t wear you out.  
The OT appointment was like a massive “Ah Ha” moment for me, because the therapist answered my questions about the scheduling and planning that I had - that were becoming really overwhelming.  He really broke the info down so that it made sense and wasn’t so intimidating.
Our shopping list includes a 1 and 2 pound dumbbell, a light resistance band, a couple of stools and a small stepping stool.  All things that will help get me stronger again, and help save my energy around the house. 
We were initially going to return the following day for the wrap up appointments from the Fibro Clinic, but the gals and the front desk slipped me an inside tip... that one of Mayo’s top doctors was going to be in their office that day and that there was an opening after my OT appointment.  We took it!  This appointment ended up being one of the biggest turning points in our journey here.
This doctor was amazing.  He began by asking me about some of my symptoms, and then if I had any questions.  I told him about the Neurontin, and the tiny bladder hypothesis, the sleep disturbances and all my questions from my new doctor.  Here is what we learned...
First, forget the tiny bladder crap.  Oh, thank God.  I had mentioned that, okay - so if I did have this tiny bladder problem, what would I even do about it?  Answer: nothing.  He said, regardless if you have it or not, they will tell you to do the same thing - and proceeded to tell me to wait 30-40 seconds when I wake up at night before getting up to pee.  Why put your body through more stress?  Not only will you most likely fall back asleep because you will be retraining your body to not wake up unless you really have to go, but you’ll stretch out your bladder by holding it in a bit more.  Problem solved.  I am already waking up less.  Incredible.  Canceling the cystoscopy.  
I have to wonder if this will piss off my new rheumatologist or not...
Next, I am a unique Fibro patient.  I am special because I have these super-powered senses in a flare; specifically smell, hearing, feeling temperature.  This puts me in category of individuals who benefit greatly from the following techniques: meditation and reading about [my own] suffering.  What?!  That’s what I said too.  Reading about how people throughout time have dealt with suffering; philosophy, enlightenment.  Perfect!  That’s right up my alley!  
I knew that Dr. Amazing was...well, amazing when he said, “There’s a reason why people have been practicing these things for thousands of years.”  This from one of the greatest medical facilities in the world.  I love you.  I almost said it.  In the car on the way home Brad said that he thought I was going to ask him if he’d be my primary doctor right then at that moment.  Like, “Will you marry me?” except, “Will you be my Doctor?”  
Dr. Amazing went on to re-explain to us the ways that the brain takes emotional or physical trauma and preps itself for the fight or flight response.  In rare instances (aka Fibromyalgia), all it takes is one major [good or bad] stressor; like a work issue, a loss, or planning a wedding, to trigger that fight or flight response to get stuck in the “On” position.  

Fibromyalgia is not as much of a physical syndrome as it is a nervous system condition.  At some point in your life, you’re set up just perfectly for it.  It’s whether your particular body is destined to get stuck in the “On” mode or not; and then, it’s just a matter of time.
I mentioned some of the “traumas” in my past, both emotional and physical.  He said that my experiences are much like most other patients of his.  Amazing.
We also reviewed the ways that the brain creates pathways, which is fascinating to me.  The saying “Fake it until you make it,” is actually the fibro doctor motto because your brain doesn’t really know the difference.  It just learns the new path.  

Our brain needs to be taken back to that peaceful and normal state; to be reminded of that pathway.  This is how you turn the fight or flight response off.  We can train our own brains to choose that path with these methods.  Meditation and enlightenment.  I was floored.  An incredible day.

We left with two books to read before bed, first “The Mindfulness Solution to Pain: Step by Step Techniques for Chronic Pain Management,” by Jackie Gardner-Nix.  Next, “Man’s Search for Meaning,” by Viktor Frankl.  Dr. Amazing was also funny; he warned me not to read the introduction by Frankl because it is “god-awful boring.”
I am beyond thrilled.  Excited to share more next week on my status!

Monday, April 18, 2011

Update 4.18.11 - Oral Surgery, Medical Leave

Buenos Dias!
I almost forgot to let everyone know about my oral surgery!  As you may have guessed, it was no big deal - since I had almost forgotten about it.  I find out next week what it was, but until then the spot seems to be healing and is only a minor nuisance.  

The Neurontin seems to be fine.  Although I haven't been sleeping well the past few nights.  I felt pretty great last week.  To note: I didn't take my Methotrexate injection last Sunday.  This also was the first full week of the Neurontin, and cutting back Trazadone.  A lot of different factors; it will be really interesting to see how I feel this week after taking my MTX injection once again yesterday.  Brad and I are really intrigued with this.  Keep you posted!
The major news for today... I am now on medical leave from work.  This happened almost out of nowhere last Tuesday; today is my first day.  When I was at the Mayo Clinic, the doctors there were very adamant on me closely following the treatment plan outlined for me in order to get healthy again.  This consists of following a daily routine that includes a lot of stretching, small bits of walking, meditation, education about the disease, and at the top of the list, fun.  The Mayo Clinic wants me to do things that make me happy and spend time with my friends and family.  Research shows that fighting illness is more successful when your heart is happy and you feel enveloped with love from family and friends.  
In my last post I didn’t mention the conversation that I had with my new Rheumatologist about this.  I told him that my employer needed updated FMLA documentation.  I explained that currently, I have been working from home due to an accommodation that needed to come to end end soon.  For lack of better term, I needed to either “shit or get off the pot.”  They would be willing to let me work from home for another couple of weeks if the goal was to either return, or go on short term disability (medical leave) at the end of that time.  I told him that my work wanted to help me and was very supportive of my treatment.  They are willing to support me however I need to get me healthy again.  This is a true statement.  
Dr. Sassy, of course said “Well, if you can do your job just fine from home, then why can’t you just do that?”  I told him that I can’t do it forever, and my job needs me to make a decision.  He asked, “Well, are you ready to go back to work full time?”  “I can hardly make it to the end of my driveway on a bad day,” I replied.  He responded, “Well it sounds like your work is willing to let you take time for your treatment.  Maybe it wouldn’t be so bad to take some time for yourself and kick this thing.”  That was it. 
The following day, I spoke with my HR contact about this, and it was then that I made the decision to begin the process right away.  So, I was out on Wednesday for my surgery, then had 2 days to get my affairs in order and that was it.  
My [specific] job is held for me for 11 weeks.  After that, they can keep me in mind for other positions, however would need to fill my position.  Short term disability is a total of about 24 weeks; then long term disability kicks in, which is another 24 weeks or so.  I’m basically on “Maternity Leave.”  
It’s really surreal.  This week, I need to read over my materials to put together a schedule based on the template provided for me at Mayo.  Thursday, we head down for a personalized physical therapy session to create a program for building my strength.  We also meet with the Fibro Clinic to review my program.  
I start very slowly.  The key is to not “over do” it, and not “under do.”  I follow the stretching routine for 20 minutes in the morning and begin taking a 5 minute walk, working up to longer walks as I get stronger.  So far, I have the hardest time with the stretches and light exercises that require me to lift my arms at the shoulder, and my legs at the hip.  Those are my weakest muscle groups due to the Dermatomyositis.  My hips hurt a lot when I do the leg movements since the Fibro seems to fester there.  
I then fill in the day with light activities; again, starting very slowly.  I chose gardening as one to start.  I will also start having different projects each week to fill an “activity” time slot.  On that list are things like, photographing and listing new items for my Etsy shop, organizing my craft room, etc.  Once that stuff is done, and no longer a “stressor.”  I can do things that I love like sewing & photography.  I also have a social slot to fill.  That can be coffee with a friend, or a phone chat.  As I get stronger I might be able to go for a walk, or visit a shop.  My activities can expand as I get stronger too.  I can do other some of my other loves, like painting and baking.
One thing that is very important on my treatment plan, as well as for my life, is having a Flare Plan.  This is sort of like an emergency plan of sorts.  I can most likely expect to have flares from time to time for the rest of my life.  It’s making sure that I am prepared to handle them, and that I know what to do to make them go away faster.  One of the biggest components here is staying positive.  This plan will include people to call (since when in pain and scared, I tend to regress), things that make me happy that are restful (a funny movie, or favorite book) and the most mild form of physical treatment (much like what I am beginning with now) to keep my body moving without hurting myself.
Another important aspect of this is surrounding myself with friends who love and understand my new lifestyle.  Maybe we had plans for a shopping day, but need to change it to a movie at home due.  Knowing that my friends are supportive of my condition and are flexible will help me keep relaxed.  The Mayo recommends keeping your plans during a flare to keep your spirits up, just alter them so that you can still enjoy that time and keep your body comfortable.  
So that is my homework for the week!  I don’t have anything else to worry about other than getting to my appointments on Thursday.  It’s a pretty neat set-up, although I am still adjusting.  
I fought this for a long time.  “Why can’t I work?  It’s all I have left,” I thought.  After hearing it from doctors, friends and family for almost a year, I finally see that I am never going to beat this until I make myself the priority.  I will get back to my normal life sooner if I take time to focus 100% on healing.  Take time for me. I deserve it.
It’s weird that when you’re outside of a situation, it’s often so much clearer.  Last year, one of my best friends was very ill.  Her doctors wanted her to take a medical leave, but she insisted on continuing to work.  She would tell me, “It’s all I have left.”  I would tell her all the time, “You need to focus on yourself, to get better.  Why don’t you take this time to heal?”  I never understood why she couldn’t just let go and let herself be taken care of.  Until now.  Less than a year later, I did the exact same thing.  I thought, “This is all I have left of my life.”  When really, why did I have to sacrifice everything that I loved for the one thing that only created more stress and frustration?   You need balance.  Now I see that you should never sacrifice the things that make you happy.  If you do, you have nothing left to keep your heart happy which makes healing nearly impossible.  
I avoided this for almost a year, but I am thankful that I finally accepted healing.  Making myself the priority feels good; I can’t wait to see where we go from here!
XO, M 

Tuesday, April 12, 2011

I'm alive!

Just in case you were wondering, I am alive today!  Haaha!

Taking the Neurontin last night was just fine.  I did wake up once, but just to grab the duvet and roll over.  Yay!  Take that bladder doctor!  I also felt pretty good when I woke up.  I was still stiff and in pain; but internally I was better, more “refreshed.”  I cannot tell if the Tylenol + Tramadol is any better, but as with both adjustments…it is only the second day :-)

Legs have been a bit more shaky/trembling but I have been using them!  Stretches are really pushing me and I love it.  Happy to be moving again.

Wish me luck tomorrow!

Monday, April 11, 2011

Update 4.11.11 - New Rheumatologist

Today I met the new Rheumatologist.  I don’t know how else to describe how I’m feeling about it other than, “shocked.”  Not necessarily in a bad way; I think that my brain is just completely overloaded.  
I walked in to the appointment ready to present him with my Mayo plan and my past treatment, which I did.  I explained that I fully believe in the Fibromyalgia diagnosis and that the FM Clinic was very enlightening; I wanted to begin working on their plan, take the drug that they recommended and begin weaning off of my current “Fibro” drug, Trazadone.  
I wouldn’t want a doctor who was a pushover; I would choose a doctor who had strong beliefs about their practice and who was passionate about medicine.  I didn’t however, expect this doctor to be one of them.  He is extremely confident.  I can’t decide if this is annoying or comforting.  

He mentioned that he just presented at a conference on Polymyositis (impressive).  When I mentioned that I had pictures of my hands in a flare, he got giddy and asked if I would bring them in.  He asked me what source brought me to see him; I answered, “Minneapolis/St. Paul Magazine” (Top Doctors Issue).  He replied, “I pay them to put me in there... I’m kidding!”  I didn’t think that was funny.
In a nutshell, he challenged me.  That is a totally new experience for me.  I will be starting on Neurontin which is an anti-convulsion medication that is also used to calm overly active nerves (linked to the nervous system).  It aids in pain relief and can help with sleep.  Neurontin is a sibling to Lyrica.  
I will then slowly wean off of the Trazadone - an old-timey antidepressant that proved ineffective; however was found to successfully balance serotonin levels in a way that combats Fibromyalgia and aids in sleep.  Not quite doing the trick for me though.
Eventually, we will also taper down the Tramadol (pain medication).  Until that time, he instructed me to take one Tylenol with each dose.  His secret pain weapon.  I later learned from the Pharmacist at Walgreens that Tramadol was actually intended to pair with Acetaminophen, but since insurance doesn’t cover it, they don’t advertise this beneficial pairing.  FYI.
Next step (this is where things got weird), I head in to have a cystoscopy (bladder screening that sounds awful) because he thinks that the root of my Fibro is that I may have a birth defect called Interstitial Cystitis, aka tiny bladder due to scar tissue continuously forming on the bladder wall.  He is gung-ho on this ever since a Fibro patient of his 35 years ago had it and was miraculously cured once treated.
His theory is that since I wake up often because I have to pee, that I might have this tiny bladder problem.  Since I wake up all the time, I don’t get a good night’s sleep which is a common cause for Fibromyalgia.  In fact!  He didn’t want to make any changes to my medication until after this bladder study.  That’s where the newly assertive/aggressive Maren entered and put the kibosh on that.  I said, “I might not get in to this new doctor for another 2 months.  I need to work on reducing my pain and start to sleep better NOW.  If there’s something wrong with my bladder and fixing that can magically cure me of Fibro, THEN we can adjust medications at that time.”  I won.  Thank God.
Honestly, the whole bladder theory sounds like a bunch of shit to me.  Three of the medications that I take cause dry mouth (we’re talking, stranded-in-the-middle-of-the-desert-thirst 24 hours a day) and so I seriously drink about a gallon of water a day.  Constantly.  If he’s right, I will fall out of my chair right in front of him.  Whatever, check my damn bladder.  It’s practically the only thing left that hasn’t been poked and prodded at. 
He did convince me to compromise on the Neurontin as opposed to Lyrica though, simply because he didn’t think that my insurance would cover it.  I panicked about this at first, until I got home and reviewed my notes from my FIbro Doctor visit... oh thank goodness, I had written that Lyrica/Neurontin were one in the same.  I recall that the other Fibromyalgia medications didn’t work with Methotrexate (my Dermatomyositis drug), so I was really paranoid.  I practically interrogated the Walgreens Pharmacist Jack-Bauer-style on whether any of my many medications would interact with the Neurontin.  Taking as much medication as I do really freaks me out; enough in fact, to remind Brad at night to check to see if I’m breathing if he wakes up at all.
My assignment is to have my medical records sent to him from my previous Rheumatologist and from Mayo.  I go back to see him in a month.  I am praying to God that this medication works along with my Fibro Plan from Mayo so that somehow I won’t have to do the bladder thing.  I just Goggled it; it's worse than I thought!  shudder.  

It might not sound like it, but I am super pumped about trying out the Neurontin in conjunction with my Fibro Plan from Mayo.  Brad and I did the stretches together last night and it felt great to move.  I felt so happy afterwards; the first steps to getting back to ME!
Wednesday I have my gum surgery.  I will probably be in a pissy mood, so perhaps I may wait a few days to let you know how it went!  Haaha!
Tah tah for now,