Updates, Labs, and 'Roid Rage...

Oh, those days where I know that I KNOW I'm running off at the mouth....I feel like those days should come with an automatic plunger for my face.

I totally feel sorry for this kid--you know that had to leave a mark!

That being said, last week, I got really sick...I made it through worship, but by the time it was done, I made it back home and went straight to bed UNTIL TUESDAY. I couldn't exactly pinpoint what was wrong; I've been feeling really run-down, my throat has hurt, and I was having such a heaviness in my chest that I kinda figured I had bronchitis, so I finally went to my Nurse Practitioner.
I've been under a lot of stress over the past few months (yeah, I guess cancer can do that). I've gained a lot of weight; my marriage is feeling "unsteady"; and my job has been busier than ever. Everything is weighing very heavily right now, and I feel like my walk with God is definitely suffering.
I've had NO energy, and I'm exhausted. The next friend of mine that puts their vacation pictures of a beach or a cruise ship on Facebook, I swear, I'm gonna barf. :)
All of that being said, it appears that I've simply caught a nasty virus, so they put me on Prednisone (a steroid) to ease the lung strain. Breathing--hey, it's important!
In the midst of that, my labs for February came back, and showed that nope, my thyroid meds STILL AREN'T REGULATED. Are you kidding me?!?!? IT'S BEEN 7 MONTHS!!!!!  COME ON, ALREADY!
Every time they mess with these meds, I gain weight, my anxiety levels go through the roof, and I pretty much feel like my brain is going to explode...It's incredibly difficult to function in this constant state of flux, and it wearies me, not to mention what it does to my family. I'm on my second endocrinologist, and I already feel like I want to knock the resident out. It's not him--it's me. It seems endocrinology is a branch of medicine that I hate. :) Unfortunately, it's something I'll have to deal with for the rest of my life...SO CAN WE GET THESE MEDS FIGURED OUT?!?!?
That being said, they've added Synthroid back in the mix (let's hope it's not enough to make my hair fall out again), plus the Armour Thyroid that I'm on...with all of this, I've decided to make the leap to a full does of the Wellbutrin (150mg) instead of the 75mg I was on.
So....steroids, new thyroid meds, and increased Wellbutrin.
I'm AMAZED at how much I can get done with this kind of energy, LOL. Of course, it also means I'm having difficulty sleeping....Once I'm off of the steroids, things should level out. I'll repeat labs toward the end of April (hey, I'm at 8-week intervals instead of 6-week intervals!), and at the end of July, we'll repeat my PET scan, most likely after a round of something called "Thyrogen," that I have yet to Google.
That being said, back to being sick: Emotionally, knowing that I have cancer in the lymph nodes of my neck is bothersome. Even though I know thyroid cancer is very slow-growing, non-aggressive, and non-life-threatening, being sick has made the nodes in my neck very swollen, which freaks me out...even though I know it's fine. After my next round of PET scans, depending on the node size, they're probably going to remove all of the lymph nodes in my neck. I need to take the time to educate myself on the consequences of that, but I haven't done research at this point, because I think it will be mentally burdensome. I feel like this virus-bug-thing is on it's way out; my nebulizer is a HUGE help, and I'm looking forward to some super-awesome weekend plans with my 3rd-grade bestie. :)
(That's a lot of commas...)
I'm hoping this med change will be the last for a while...I'm hoping I can learn to accept my body in this shape, and stop beating myself up for the weight I've gained (feeling bad just makes me eat more, I swear)...I'm hoping my marriage can catch a break where my health issues stop causing us so much stress, and stop affecting our communication/emotions/life in general....

The brightest spot of all has been, in a word, Jericho. He's funnier than ever; he's smart, he's bright, and yesterday, he learned his first Bible verse (Gen. 1:1). He's officially potty-trained (only took us 7 months), and he's brave. He announces himself when he walks into a room (sorry, Bread Co.), and he makes my heart explode in the best of ways...My husband is an amazing father to that little boy, and the two of them are bonding heavily over Legos right now (UGH. LEGOS.).

He knows his full name, his numbers, can count to 10 in Spanish, and is beginning to put his letters together to try to spell words (thank you, PBS!). We are beginning to discuss schools, and I'm trying to not be completely overwhelmed at the choices in education...(yeah, right!)...Praying for wisdom is an hourly thing in parenthood!!

The steroids I've been on have made me chatty and slightly-more unfiltered than normal, so my apologies if this is a TMI post...The truth is, I've been very sad lately...Up until this weekend, I'd say it's been since before Christmas that I can remember feeling "right," and it's been....well, sad. Nothing seems right, and I've felt like my joy got sucked out. All of the meds are now adjusted; I've always felt like when things are off chemically, it affects every facet, from the spiritual to the physical to the spiritual. I'm not really feeling like myself just yet, and probably won't until I'm off of the steroids; once the course is done, I think we may have our med combo figured out.

If this blog feels like it just goes in one big, static-ish circle, you're right--it's a rambly mess.
But that's kind of my life right now.
It's more good than bad, but it's a disorganized basket that's taking much longer than I have the patience for, to sort out...
Thank God He has some sort of a plan...knowing that, having faith in His abilities to make this ball of yarn into some kind of a tapestry, is a driving force for me. My life makes no sense...the things we've been through, as a family? In our marriage? None of it makes sense.
Jesus makes sense.
So, in this mess, I trust Him, and I discipline myself to find the joy in the best AND in the worst (and believe me, we've been through worse). These are not our darkest days, by ANY means...they're just frustrating days, but we're moving forward.
We keep walking, together, knowing that He will work all of this out for good, because we love Him. 

Me? I'm asking the Wizard for a new Heart...

It’s my blog, so I can cry if I want to, right?

I’m not posting a lot about this on Facebook, because I don’t want to stir worry or drama. My blog is not what I would consider well-read (my husband doesn’t even read it, so there you go!), so I feel like I can get a little more honest here than I am on Facebook when it comes to my health issues.

Most of you know the history: 2006 brought peripartum cardiomyopathy with congestive heart failure and pulmonary hypertension, after the birth of my daughter. I really didn’t  ponder my own mortality in the light of her passing; frankly, I didn’t want to live, so I didn’t think about whether or not I’d recover for a long time.

I did recover, and in 2011, got the clearance to have JD, who was born in 2013. His birth brought on another round of congestive heart failure, in the technical sense; my ejection fraction dropped down to around 30% (WAY better than the ’06 version), and with the care I received in the hospital, by the time I had a follow-up echo last May, I was back up to around 40% (normal is 55%-65%).

If you ask me on a normal day, heart-wise, I feel fine. After I had JD, I had to go on Zoloft; I gained 30-35 pounds between April ‘13 and January ’14, and got up to the second-highest weight I’ve ever been at (SO demoralizing!).  My gall bladder had to come out in July; there were complications. After that, I started having headaches and neuropathy, and a new blood pressure medication had to be introduced.

Switching my medications and using the Arbonne protein shakes has dropped my weight down 24 pounds since the end of January; I have around 40 more that I’d like to lose. It’s nice to be back down to my pre-pregnancy weight, but there’s a long way to go!

With the weight loss, the neuropathy symptoms have gotten better [“idiopathic neuropathy” and possible tarsal tunnel—what the heck? “Idiopathic” just means they have no freaking clue why my hands are going numb. I don’t have carpal tunnel or any head/neck issues that show up on an MRI. Since it’s doing better, I don’t even care. The tarsal tunnel (feet) is not much of a surprise, and I can avoid surgery by doing what I’m doing—good shoes, lose weight, stretching, etc.]

Until the beginning of March, my blood pressure was looking awesome. My numbers were running in the 130/70 range for a high (prior to the third medication, it was more like 150/90), and I was hoping that the weight loss would mean I could go off of the third medication when I go back for a cardio checkup in June…but things changed. 

I caught the stomach flu—not the nice, 24-hour bug; I caught some stupid version of it that lasted a week. I recovered (-7#!), and thought things were looking good, until a respiratory bug hit our office. It started almost 2 weeks ago; I mentioned to David on a Sunday that I had a sore throat, and didn’t feel so hot. I took a hot bath with essential oils, bumped up the vitamin C, and hoped for the best. By Tuesday, I felt bad enough to leave work early; I barely made it through Wednesday. I called my doctor, who started me on antibiotics; by Thursday, my boss sent me home from work, and I had to go into my PCP’s for a breathing treatment. I also started an Albuterol inhaler. I was off of work on Friday; by Saturday, I had a few short errands that HAD to be run. Three hours out of my house, and I felt like my chest was going to collapse. By Saturday night, a coughing spell kicked in, and I couldn’t catch my breath; I had to be taken to the stinking ER (where they were incredibly kind and efficient). IV steroids, another breathing treatment, oral steroids, Mucinex DM, a chest x-ray, and basic labs…nothing was determined, other than this is a nasty case of bronchitis.

I should be feeling like a million bucks, on all of these drugs.

I feel like crap.

I still can’t breathe; I’m still coughing. I had a follow-up with my PCP yesterday, and I could tell she was concerned. My oxygen levels are good-96-99%. My EKG is good. I have minimal swelling in my legs…but I can’t catch my breath, and I can’t stop coughing. There’s no medical reason they can determine as to why I can’t breathe. They’ve added another inhaler, and Lasix to get any extra fluid out; my blood pressure and pulse are through the roof. I feel like I may as well not be on any heart meds, because my numbers are stupid—159/97, P100. That’s ridiculous—I’M ON 3 CARDIAC MEDS!!!!!!!

I’m waiting on lab results to rule out another round of congestive heart failure—a relapse. The thought of that scares the crap out of me, even though I know it’s treatable. I have an echocardiogram scheduled this afternoon; depending on what happens, I may have a lung CT on Friday to rule out a blood clot in my lungs.

3 cardiac meds. Steroids. 2 inhalers. I finished the $%*(% antibiotics. Lasix.

I want to cry….but that would make the breathing even worse.

I’m miserable, cranky, exhausted…my husband has been picking up the slack for the entire month of March, and I am tired of asking for favors. I am so frustrated that every time I try to pray, all I can think about is how terrified I am that my heart is going to just crap out on me, and I won’t be able to see that beloved little boy of mine grow up…I know that’s being dramatic, but I can’t get it out of my head. My mom says (so nonchalantly), “Well, it is what it is.” That’s BULLCRAP. Don’t give me that crap. I’m doing everything I can to work, to parent, to be a wife—I don’t have TIME to feel this lousy, and I sure as hell don’t have the energy. We also don’t have the money to deal with these kind of medical bills.

I’m going to admit right here that I’m totally freaking out.

I am having one of those times where I want to ask for prayer, but I don’t want anyone to feel sorry for me…I just want to be able to breathe without this rattling, and to sleep solidly…I want my BPs to settle down and for this %$*( bronchitis to go away.

So, if you don’t mind, could you please pray for me? For David and Bug—David needs an extra measure of understanding and patience. He’s been nice about this, but I can tell he’s at his limit. JD is cutting teeth, so he’s congested and fussy, and it’s taking a toll on all of us.

And me—I need to breathe (physically/mentally/spiritually). To have an entire month of illness has stretched me beyond my limits, and I need grace…and I need to be able to tap into the grace I know Jesus supplies.  I don’t need sympathy or drama…just support (and for Oprah to adopt us, LOL!).

Thanks…it’s not easy to write this stuff, because I feel like a self-pitying schmuck. I have to accept that sometimes, it’s okay to vent and ask for help…:)