My day started out the same.
Slept through the kids leaving for school…again. Woke-up tired, again. Grabbed a bit of cereal thinking, “Maybe this time it may give me some energy”…no. Drinking mountain dew doesn't even help. I just keep dragging on…thinking somehow I will magically feel better. It's been like this for a week now…frustrating me to no end.
You know me. I'm full of energy. I don't like to sit. Hello…did you not read the post about stopping? It was hard, yet energizing taking a week off. I was “back” Sunday and Monday before, out of nowhere, I caught a virus that landed me back in the doctors office again that Tuesday…a week ago today to be exact. It was confirmed today that I did have a virus and was not…I REPEAT…WAS NOT overdoing it! I just drew the short straw again. When you catch something ontop of CIDP, well, it just knocks you out. I was given very rough meds…one was a drug they give to patients before surgery. I now know this drug alone (given for pain) actually did not react well with my system…leaving me in a twilight phase for literally days. Fun fun….
In the midst of being sick, I was surrounded by doctors and close friends extremely concerned that I do not know how to pace myself. It was overly communicated to me that I caused this sickness I was going through right now because I tried to do too much, too soon. If I could cognitively think of it…I think I would have compared myself to Job. I was already down. I was told that my heart was suffering from the CIDP. I was told that I didn't understand what I was doing to my body by not stopping…when, in reality, I thought I had cut back…a lot.
For the first time in all of this…I admit it, bluntly. I QUIT. that's right…you read it correctly. I gave up. I folded. I quit arguing back. I just sat, sipped my pathetic Mountain Dew and drifted off into lala land. I cared less about trying to change anything. Nobody was listening! I knew my body felt “off.” I went to the doctor and came back with orders to rest and six different medications which made me feel WORSE! When I called in to complain, I got the “See if you feel better in a few days and then call us back.” Fine. Eventually you just buy-in that maybe everyone else is right and you just need to quit running.
Not so fast.
This afternoon I was feeling beyond horrible. It was decided that I was going to take a few weeks off…not my choice, but the way I was feeling, who was I to argue? I felt like I was just done in. How in the world did I get here? I glanced around the living room…it was me, myself and I. Silence. Darkness. Dread. Blah.
My phone rang. Actually it sounded, “Twinkle, twinkle little star…” I changed the ringtone a week ago for Caden. It made him smile…when he was around. I miss my boys. It's SO hard feeling like crud that you can't take care of your boys. I love everyone helping out…but I MISS MY BOYS! If you are not a parent, you have no idea how HARD this journey has been for me as a mom.
I answered my phone…it was the doctors office. Of course, who else would be calling? I've practically fallen off the face of the earth! Everyone has been calling Steve because I quit answering my phone when I got sick…people catch on quickly.
The voice on the other end asked if I had a follow-up since last Tuesday. No…actually, I was going to call…someday…But before I could really elaborate, I was asked to see a different doctor…a cardiologist that had been following my case since my low CSF incident that started it all. The name didn't sound familiar, but I REALLY wanted out of the house. I hadn't worn anything besides sweatpants for an entire week! The secretary told me there was an opening in 90 minutes or I could wait until a week from next Thursday. I told her I would see her in 90 minutes.
I called a friend who just happened to be 5 minutes away. I made it to the office early…yes, a rarely for me. But I guess the office was slow because I got right in.
I was calling Steve to let him know I wasn't at the house. I was excited…stumbling over my own two feet…but excited! It was an adventure…okay, maybe not the exact choice of words for the situation, but do I really need to remind you of my last week? Shoot…I saw a palm tree and tears of happiness flowed up! I was free!
In came the doctor. Still didn't recognize the guy…but after all of the white coats I've seen this past year, eventually they all just blend together. But then again, I was still not feeling well. He gave me a look over. Drew blood. Peed in the cup. Got the temps. Got the vitals…nice to see you too.
He returned and handed me a paper. “You are going to infusion. You need fluids and I'm ordering an injection too.” Oh joy…my favorite place to be…but I LOVE those chairs! I got the fluids and the vitamin injection he ordered. 75 minutes later and I caught myself smiling.
Back at the office – Dr enters again. “I see the last time we spoke was August of 2011…low CSF diagnosis.” Yes…and before I could start my rant of the years episodes of dramatic events, he started telling me, dates included. I just sat there, listening…I even forgot parts of my story! He knew dates, names, locations, drugs…the works. Here's the kicker…READY…he said all of this WITHOUT LOOKING AT HIS NOTES! Okay…either this guy is a total freak (jury is still out on that one) or he is really interested in my case (clearly a given). He didn't miss a beat…he stopped when he got to today and said, “And you come stumbling in here a week after you were treated and wait for US to call you? Have you not learned anything over this past year Mrs. Boring?”
My jaw was open…seriously…I felt the air go in and then leave my mouth…I just couldn't get my jaw to close. Awkward.
What he said next completely took me…energized me…had to be one of the best comments a doctor has EVER shared with me. Ready?
“You look like crap kid. You've given up. If that's the way its gonna be, go somewhere else.You are a fighter and deserve to win…now shape-up…I believe in you damn it, believe in yourself!”
I swallowed hard. I wanted to say something…but he said everything right. He took out my entire offense and defense in one blow. Crud. This guy knew my story and he knew me. Great…I can't fake my way out of this.
There was this long, awkward pause. He just stared at me. I stared at him. Then at the floor. Then back at him.
Finally he said, “Well, are you in or what?”
“I'm in” I muttered.
“Really? You go a week feeling like crud and you are in? No, you listen to me. We are doing things differently from here on out. I call the shots. I help you first. You call this office if you sneeze…you got that? You call until they get tired of hearing your voice they send you through to me! You don't give up! You know better than anyone else if something is wrong and you raise hell until someone listens…and if you are not heard, go somewhere where you are! Period! That's what caring about yourself looks like!”
And to think I was content drinking my Mountain Dew…shoot Dr Phil, where the heck have you been??
He continued to tell me that he had been reviewing my records (obviously) and noticed a lot of inconsistencies. Although all of my doctors are technically under one roof, they have a LOT of opinions, ideas, personalities….basically, he said there are far way too many people involved. So, effective today, he is my new PCP. Good deal. He gets things going and doesn't have me wait FOREVER just for a signature! YAY!
Second,, he is helping me find a local specialist to visit monthly regarding Charge syndrome. He is also giving me books to read. He has challenged me to not just take a doctors opinion…I can be the expert. Study up. I'm not sure why I didn't think of that. This goes for CIDP as well.
Third, I'm starting Gammex-C IVIG on Thursday (he moves fast). He doesn't care about getting all the paperwork cleared…my health, my heart, my mobility is more important than the fine print. It can be sorted out later. I like that someone puts my health above the red tape. I've been trying to get this IVIG for over a month and rejected getting a doctors signature. I no longer need that signature…I finally get the treatment I've been hoping for!
Fourth, after review of my heart ultrasound, he believes that my pacemaker could be changed to a different setting, putting less stress on the heart to recycle through the process. He does need to discuss this with another doctor, but feels confident he an do this on Thursday. I was also taken off all of the meds I was on causing me even more heart related issues.
The biggest…I love this…I will be getting another heart stress test and ultrasound early next week (possibly even Monday) to look at how the heart is formed. The dr explained to me that my heart is different shaped, which means to most it appears smaller – thanks to Charge Syndrome. However, being that the heart functioned properly prior to the CIDP, it is perfectly capable of maintaining a normal amount of activity PENDING the CIDP can (and according to him WILL) be under control. The longer we go just waiting for the right IVIG to clear the red tape, the more I lose the opportunity to continue to function as I like without relying on meds and a complete change of life. He will go into greater detail with me, but all of the necessary functions are going as needed…once the pacemaker is adjusted, CIDP under control and proper blocker in place, I should be able to regain most of what I used to do…at least with IVIG in the picture. He added the familiar clauses that “this isn't a given but a best case scenario”…but someone FINALLY is fighting for the best case scenario! ABOUT TIME!!!!
He also gave me permission to cut myself some slack. He told me when a virus attacks a body with an autoimmune disease, the body literally shuts down. I can't prevent that. I know my own limitations and I need to learn what they are, but I can't expect not to get a virus. Instead, move on. Get hydrated. Take my vitamins. Keep my appointments with him. And yes…rest…but don't completely stop. I need to move towards a goal. I need to have challenges to meet. My challenge this week – develop a new basic routine…something that can be added to slowly to see my limits.
With SO many voices, I'm looking forward to sticking with one that really does “believe in me.” Finally, someone who knows me, trusts me to communicate my frustrations and has agreed to listen. Plus, he is blunt as daylight…I can't ever walk out feeling confused on where he stands.
So…tomorrow is the 4th. I'm already feeling SO much better! This has been the most I have written in over a week (making up for lost time). I'm really hoping Dr. V is right. Dr. A had his time…now I need a central voice to get this chaos controlled.
If I can sum everything up, I will say to those of you feeling like nobody is listening…to those who deep inside feel something isn't right…FIGHT! Don't give up like I did! Granted, it was only a short time, but it was lost days that I could have had enjoying my family, instead of being dazed and sipping Mountain Dew. Don't give up. Relax. Know your boundaries…but make sure you find that person, that professional in your corner that is listening to you and wants you to be more than what you dream you could be someday.
My journey continues…. Glad you are still with me!
PRAY for clear guidance
PRAY the ivig takes and works (veins ready to go too!)
PRAY the ultrasound reveals what Dr V needs to see to make a clear consensus.
PRAY that the pacemaker can be changed (this is very simple to do…just connect, click on a computer and done!). PRAY it works!
PRAY I continue to rest…gets harder when I'm feeling better!
PRAY any new meds work or can be changed to play nice together.
PRAY that these next few weeks go smoothly…possibly doing plasma therapy as well…easy procedure which I'm really excited about…but new nonetheless.
PRAY for easy paperwork and correct medical coding and filing the first time…but thankful that I finally have a dr that fights to get what needs done!
PRAY for a clear scan…no clue when this will occur (late…was supposed to have one done a week ago).
THANK YOU ALL!!!!!!