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.