Saturday, February 26, 2011

On another note!

Hello friends, 

I am super excited as I write this because I just bought us a Serta 4" Memory Foam Mattress Topper!  I have been in so much pain over the past week or so, that I haven't been able to sleep; so I finally made an attempt to fix the problem!  

I am so excited that I can hardly wait!  They say that you should air it out for a few days before using... but if I have to wear a gas mask to bed, I'll be laying on that thing as soon as it arrives!  It was a pretty great deal too; hopefully I agree with the rave reviews.  I hope that Brad and the pups like it too!  I'll keep you posted.

I didn't think that my last post was as depressing as the one before it; but apparently others did.  I received quite a few concerned emails and phone calls afterwards asking if I was okay... ooops.  Sorry.  

Let me make one thing very clear.  I made a decision in the beginning of writing this blog to be very open about what was happening through my diagnosis and treatment.  Sometimes I do get really upset about what is going on; but never have I ever doubted the amazing gift that is being on this earth.  I would never take that for granted.  No matter how difficult some things may be to get through, I know that I will.  So no looking for me up at the top of buildings after you read a post; I'm okay!  

I do thank everyone for their concern though, and of course for all of the support and prayers.  I know that when this is all behind me that it will not have been a battle won alone.

On another note, I work from home now!  I have been for about a month already, but this accommodation was officially approved for me last week <deep relieving exhale>.  I'm getting used to it; a little lonely at times, but I am a machine!  I have settled into being this like, SUPER productive human.  I surprise myself - just whipping through my work, and feeling really good about its quality too!  It's nice to feel that confidence.

So, I just wanted to check in.  Still another month to go until my Mayo appointment.  Just enjoying the beautiful fresh snow, and hanging in there :-)

All my best, 

Wednesday, February 23, 2011

Time flies... sometimes

It’s already March, almost.  I cannot believe this.  I’m not trying for 2 - 2 in depressing posts; but my generally upbeat self is well, exhausted.  The past few weeks since my last post have been nearly more than I can handle.  
I have been faced with the possibility that I may have to go on disability for work which is completely deflating.  My Mayo appointment is so close at just five weeks away; but painfully far given the now 8 month wait to get better.  My Doctor is more frustrating than ever.
Of course I am happy and grateful for all of the wonderful things in my life; but these past few weeks have really tested my spirit and my strength.  I feel that ‘give up’ feeling, but I can’t; not if I want to get better.  I am so tired of fighting for myself.  Not the fight to get healthy, but literally fighting for me.  Fighting my Doctor, pharmacy, my insurance and with my health benefits.  And then I’m in such a ‘fighting’ mood, I get pissy with my husband for no reason and then completely fall apart because I am just so tired.  I’m a mess.  
Why can’t I just get someone to fix this all for me?  I have this terrifying fear that I’ll go to the Mayo expecting a ‘Hallelujah’ moment only for them to tell me that I’m not even sick or that they missed the fact that I have a humongous brain tumor or something.  I hate feeling like this.  
Sometimes I cry thinking about the “what ifs.”  What if I’m never myself again?  What if I’m never fun, or goofy?  They don’t know what’s really missing from me aside from blood cells or an immune system.  I’m going to tell this to the Doctors at the Mayo.  I want them to know what Healthy Maren is like; it speaks louder than any lab test to me. 
So, my appointment at the Mayo Clinic is at the end of March.  In the end of April, I meet with my [possible] new Rheumatologist.  I wish that I could just get in to meet him now.  I cannot take going to my current Rheumatologist anymore.  

Why I don’t like working with her: I am not important, I am one of 20 patients that she’ll see that day.  She has no time to review my chart prior to seeing me, so after I wait 45 minutes over my appointment time to see her; I waste most of the time repeating things that we have already discussed.  I actually remind her why we are on our current path.  It infuriates me.  After I find my new Doctor, I intend on writing her and the hospital to tell them exactly why I left.  I'm glad that I'm in a less dependent place now, where I can see things more objectively, and I understand the situation enough to confidently explore my other options.
So enough venting, here are the few updates that I have from my 10 week (on Methotrexate MTX) appointment yesterday.  My red blood cells were low, inflamatory markers were high and my auto immune markers were the same.  Yep, it's still there.

I have built up a tolerance to the max dosage of my sleeping medication, ooops.  So I began taking Lunesta yesterday... I think that I woke up 8 times last night.  We’ll go one more night to see if there’s a “break-in” period, otherwise I’ll switch to Ambien.  

Yesterday was not a good day in terms of my energy.  I was exhausted.  When I suggested that this might be a good time to check anything related to that, her response made me sad.  She said that the drugs that treat my disease(s) are not generally very effective at the “energy part.”  I might always have days when I feel exhausted.  That sucks.  I don’t like thinking that daily activities, vacation plans, or time with friends might always be dependent on how I’m feeling.  Boo.

We both agreed that it wouldn’t be a good time to start a new medication so close to my Mayo visit.  I asked her if I wasn’t going to the Mayo, if she would change my treatment or stick with it and she said she would “give it more time.”  She also said that she would add a drug called Hydrocholoquine which “boosts” MTX and would help stabilize my immune system.  Theoretically evening out my good v. bad days, and reducing the amount of pain that I am in.  This drug is very slow acting though; I asked, "why don’t I start it if it’s not even going to be working yet in 5 weeks?"  She said that she wanted to see what Mayo thought.  I immediately felt her passing me off; she’ll just let the Mayo Doctors figure it out.  AAAAAAAHHHHHHGGGGGGGG!!!!!  
I have had some absolutely wonderful Saturdays!  My dear friend is having a baby, her shower last Saturday was perfectly timed in peak Maren hours!  I went, sat pretty much the entire time, and I felt great!  I was having a pretty good day overall, and seeing special friends put me over the moon.  Things like that keep me going.  

God, I love my friends, they are the absolute BEST!  I enjoy bragging about them whenever given the opportunity.  

The weekend prior we had ABOM (A Brunch O’ Month) on Saturday morning and that is always a riot.  We’re trying to adjust after one of our members moved out of state; but knowing that she’ll be back for a guest visit soon is exciting!  Saturday mornings!  I’m like a little kid again, except I’m not watching cartoons!  These fun Saturdays are proof that I’m still in there!   It's too bad that they're just one day out of the week, but I'm still grateful

So, on such a good note, I’ll sign off!  I’ll check back in a couple times before the Mayo appointment :-)
Hope all is well!