Friday, June 10, 2011

Thumbs Down

*Thank you Summer for always giving me input*   It means so much to me!  Huggin you!  I need to catch up on your treatment myself.

Now on to the latest and the not so greatest........
Yesterday we had a clinic appointment.  There have been some changes in my life that I am very thankful for but has added a new element to my emotions and the ability to deal with all this.  I mention last week that Gary and I kind of have a job now!  So blessed to be able to bring him with me and help support the finances of my family.  Now it doesn't do very much for all the house work that needs to be done but hey, we will manage.  Just feel so excited and blessed to be involved with 18th Avenue Pasta!  I was able to take a couple hours off yesterday and get Gary in.  Here is where the element puts a crick in my ability as a mother to deal.  It was a complex meeting of sorts.  It took me off guard.  I had mentioned in my last post that I had called the nurse line to discuss whether or not doctors agree with each other amongst the department if changes are made.  She assured me all would be fine.   The nurse injected me with a confidence that they would agree.   Wrong.   Wrong-O!!!  I mean profanity, really.  Our main rheumatologist was miffed.  She burst in yesterday, gentle but in had a force behind it all.  Nothing, absolutely nothing at all was directed at me but I have a brain and can put two and two together to make it some of my fault for not saying, "hmmm, lets check with our main doctor before we make this change."    Big problem is I agreed with the increases.  Whole heart, agreed.      Main docs problem, she wanted to give the Rituxan a chance to work.  Now we won't now whether its the increase in medications or the Rituxan working if we see results.  I am just purely exhausted.  After a late meeting, and not being able to sort my feeling and thoughts out right away because I had to shift my focus back to working, resulted in a good long hard cry.  I am a little frustrated by all this.  I feel like I messed up by allowing it, fouling up his all of our efforts to get him off these drugs.  Yep.  I know its there job.  But its mine too.  I am so in favor of aggressive treatment, and often go on fear which maybe makes my decisions irrational because of my strong maternal connection to my baby.   I want him better.   I want this disease stopped.  Completely.  Not just some of it.  All of it.  His calcium increased since the treatments, which granted it has only been weeks.  He does have some nail folds that look good, and a few that look terrible in my opinion.  Like I said when you can see capillaries bursting without any instruments, disease activity is present.  We discussed his hoarse voice.  This month, some days, I was constantly asking him to repeat himself because I couldn't hear him.  We did an xray's yesterday to see if they could see any calcium that is causing it.  *Thank you Summer for telling me about how your voice does the same*  If they see anything, she will show a ENT doctor and see if they want to see him.  Gary's strength is great.  She doesn't thing it is from weakness of the muscles in his throat or vocal cords.  I want to agree with that but I can't be sure.  Think I need a vacation.  I would be very surprised at this point if they put him on Cytoxan with the Rituxan.  Not after talking to our main doctor.  I see both points of view of the doctors and the why and why nots.  Really hard to say, "hey I think your wrong" to anybody because I don't know either.  The doctor that made all the increases took time to look at the big picture.  I asked her if she saw his labs.  She said yes, and only one was elevated and they believe it was a lab error.  WTF?  Yes I said it!   I was told all of his inflammation markers were up, and were on a upward trend, which I had been tracking that too.  I reminded her another reason I had agreed was due to Gary grew.  When he was three, we increased all meds.  He turned four.  He is bigger.  Needs a little more.   Really people.  I went to a community college.  This shit is gonna drive me a to a looney farm.  Yep,  just lost all class didn't I?  Now that I have injected the vulgar of profanity into my blog, I will drop to my knees and pray to Jesus.  I ask He forgives me.  I ask for answers, protection, peace, and clarity.  I ask for strength and intelligence.  I am so very thankful, even in the midst of my knotted tummy, and tight heart, for the medical care we receive.  I am so very thankful and feel blessed in the midst of it all.  I ask He helps me focus on that.  I will trust.  I will love.  I will be thankful because I am.


  1. Ericka,
    This was like reading my own blog last week! A nurse at JHU was taking it in her own hands to increase my Steroids and almost gave me an ok to start a big drug on top of all my others without the Dr.s ok. I did take the steroids thinking the Dr. OK'd it but then when she said ok about the big drug my pharmacist friend (I put his kids thru college we're friends now LOL) told me that would not be a smart move and to talk to my Dr. when I did she was floored that all this info had not been given to her and this nurse has done this before so admin was called, in meantime I got worse now they have to up some meds, pull the steroids down kinda rip off the bandaid to expose a little and I have to go thru all of this crap again it stinks it really does! I get what you are saying I felt like I was gonna have to go to a looney farm last week than they gave me a Xanax to counteract steroids LOL...geez I am sorry all this crap happened to you too....we are at the best hospitals yet mistakes still are made and it sucks when it is us, our lives, DM is an awful disease, it sucks to have to keep going thru it but you know what we will get thru it and we will be stronger because of it and as much as it sucks and I hate it so much for Gary me and you and our families I do like that you and I have each other to lean on! Oh they did the vocal cord thing on me and mine was called Retnoid Fixation from DM when I flare it does it when I am out of a flare it goes away....geez....I have calcium deposits in my hands and with Adult DM that isn't common thats why they say I am more JDM then DM....crazy stuff...hey if you have to go to a looney bin request a king size bed and I will check in with ya Ha!

    love you

  2. Blogger is getting on my nerves! LOL...I typed a big comment for you last week did you get it? Anywho I was gonna tell you I could have wrote this word for word and I pretty much did a few weeks ago on my post titled Dear Bloggy of MIne. I had so miscommunications at JHU concerning a nurse who thought she was a Dr. and giving me go ahead on increasing meds without Dr. approval and not giving the Dr. any of my phone calls etc. it got really bad and finally when she told me that her daughter that was a pharmacist thought it would be fine for me to start this big drug I was like um no I need to talk to my Dr. before I start anything it was so crazy...she has pulled this before with another patient and admin was called and she is pulled off of my case but now we are left with a big puffy steroid mess that they have to taper on top of the pulses which is causing my deposits to come back ulcers swelling red rash well you know the crap stuff and they have to do this to see what all damage the steroids are doing as well....crazy....I am so sorry gary has to go through all of this is crazy when they make mistakes they try to blame us um no not us we are smart and caught it LOL...they did try to say there was lack of communication on the dr here and at JHU and that was my fault and I said nope I gave the nurse all that info thats hers and the dr here backed me on it crzy I tell ya! Ericka this disease sucks and I wish neither of us had it and I am glad that I have you to lean on and I hope I help you as well! The retnoid fixation is what I have when my DM flares...I went to a vocal specialist and they said it is when one of my vocal cords wont turn it prob has something to do with the muscle ....geez....I hope all turns out well with Gary and girl you are doing the right thing you are and don't let anyone tell you different

    love you