Saturday, September 22, 2012

Just So Tired

I can't stress enough how much Rituxan has kicked my ass. If I had nuts, I'd compare it to a swift kick to the nuts. Just think, round two of chemo is in 11 days. I hope I feel better by then for Pete's sake.

The fatigue is debilitating as is the floaty feeling along with that flu like achy feeling. All of these feelings combined just make me feel horrible. I am so tired of being tired and I am so sick of being sick. That is the only way I can sum it up.

I looked so hideous on my Skype date that I didn't even want to look at myself in that small right hand box and I cut the conversation short before I started crying at my hideous appearance. I just want some magical health fairy to come down, sprinkle health dust on me and I'd be all better. I know I am no fun to be around and I don't like being that person, but a chronic illness is a full time job. Rita never leaves for the night or takes a vacation. I'd be happy if she damn well did.

I thought I would be better by today and that was one lofty high achieving goal I guess. What can I say? I aim high.

Another Saturday night wasted on illness while others are out there socializing and having a life. I have my pillows and my pills.

Someone with a fun, exciting, and healthy life report back with their Saturday night shenanigans. This way, I can live vicariously through you.

I rest my head in hopes of being in a sleep induced Paradise.

Friday, September 21, 2012

Wedding Dress Hell

This week was beyond nuts between doctor appointments, I forgot to blog about something important!

Wednesday was my first adventure into the world of bridal gowns. At the bridal fair last month, I made an appointment with David's Bridal. I stated to the store manager I am in essence, the anti-bride.
I am not into frilly dresses, poofy dresses, or anything that looks like an overall cream puff. The manager was laughing at me like I was some type of comedian. I was being honest.

So, after reading proper etiquette about when to start dress shopping and all of that, I accordingly planned for September.

Since my engagement in November, I have been looking at various bridal magazines for ideas because I was truly the little girl that never imagined her wedding day or wedding dress. After looking at all of the various dresses, I was never close to my perfect gown, I just became great at eliminating what I didn't want. Then it turned into minimal requirements.

Look at all of these styles! Ugh, too complicated for a gal like me.

As I showed up for my appointment, the manager remembered me right away (I make lasting impressions on people for the wrong reasons). She knew I wasn't excited. Quite honestly, I visioned my wedding dress shopping as a necessary evil, just like my surgeries, infusions, and appointments.

If the manager knew I wasn't excited to go dress shopping, why the hell did she pair me up with the peppiest bridal assistant? Literally, my bridal assistant was short, squeaky, chipper, and did I mention short? She was 5 feet even. Me? I'm 5'8. We looked like Mutt and Jeff.

After introducing herself, I had to tell her to tone down the pep and excitement. I am not one to be the center of attention and I am not excited to try on millions of dresses.

She asked me questions about what type of dress I was looking for. I noted these crucial guidelines.

1. I don't want to look like a whore walking down the aisle (I hate when brides look like whores on their wedding day, save it for the bedroom ladies).

2. I want it to cover my ankles (I don't need to be reminded of swelling and disability on my day and in photographs years after).

3. I want coverage option (which correlates with number 1).

4. I want to be comfortable, cool, and can move (not a sweaty pig who can't sit and eat her dinner and cake).

Four simple requirements. I told her I did not care about white or ivory. I told her I'm 33 the jig is up.

With my 4 simple requirements she came out with the 1st dress. I tried it on and liked it. I knew inside I would not be the bride to love her dress and cry with happiness as I say "yes to the dress".

My mom liked it and women shoppers gave me a lot of compliments in it. Bridal shrimp kept it on the maybe rack. She came with several options and each one after my dress kind of sucked. No, literally sucked. I was sold on the 1st dress. My mom looked shocked and wanted me to keep looking around for months on end at other bridal stores. Why would I purposefully put myself through this bridal hell over and over. I said ring that puppy up! I really like my dress. I will not give away any details (my fiance reads my blog). However, one did slip today in my post-chemo phase. My fiance now knows I chose an ivory dress. That's all he's going to get out of me.

Wedding dress shopping just wasn't for me but I am happy I can check that sucker off my bridal list! I'm aiming for minimal stress since my disease feeds off stress and it makes Rita worse.

On a side note, today was a rough day post Rituxan. I felt utterly horrible and I am hoping I pull it together tomorrow. My next round is in 12 days. Yikes.

Thursday, September 20, 2012

1st Round Goes to Rituxan

Today was Round 1! Ding Ding Ding.

Rituxan commenced today with a large amount of nerves and dreary eyes from so so much Benadryl. I know this infusion is the big daddy of them all, the actual chemotherapy (not the pretend shit like methotrexate (I kid I kid)).

8:15-Showed up already drugged.

8:30-Start the saline solution and roids in my line

9:00 The drip started. When I say drip, I mean d--r--i--p--

9:00-3:45 the slowest drip I've ever endured.

I saw people come and go. Blood pressure cuff was slapped on me every 15 minutes for the first 2 hours then every 30 minutes. I had to pee so much.

I am happy to report no allergic reactions. However, sad to report that there were major heart issues. The one doctor wanted to call an ambulance. No thanks bub, I don't want to pay that bill.

BP went real real low from real real high and it kept doing that on and off. Then my ol'ticker was racing at an even 140-160 resting heart rate. I know, my stress test in 2 weeks will show ventricular tachycardia. My Dad was diagnosed with it at 40 and having concentric left ventricular hypertrophy doesn't help with the addition of beyond inflamed Rita. Does anyone else have high high CRP's? Mine are always in the high 50's to 60's. It's been this way with medicine for five years. No wonder RA attacked my heart.

I left drugged, bored, hungry, and thirsty. I also was sweaty and am still sweaty. It feels like I was hit by a bus carrying the flu. Hopefully tomorrow will present better symptoms. I love my staff at my office they really rallied for me today. I appreciated that love and support. However, don't get the idea that I will be a prolific invalid like Robin Roberts.

This is how prolific I looked today bored and with the nastiest taste in my mouth....




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Monday, September 17, 2012

I'd Rather Be Wearing a Halter Top...

...than a halter monitor.

Bright and early this morning, a halter monitor tech slapped on leads on my chest and stomach to wear a halter monitor for 24 hours. I was told that if I had episodes of shortness of breath, palpitations, and increased heart rate, my monitor would show "episode" on the screen. It hasn't been but oh seven hours and my monitor has shown a few episodes ahaha. Man oh man. I can't wait to see what this report says tomorrow.

Me and my leads for 24 hours:

On another medical note (since the life of the chronically ill always revolve around medical shit), I received all of my lab work-up from Duke. Surprise! I have Rheumatoid Arthritis (let's all say a collective dddduuuuhhhhh). I thought that was a given when I went to Duke RHEUMATOLOGY. I don't know if she didn't believe me and my many years of medications and surgery, or she wanted to see for herself? My ANA was whacky though. I hope Lupus does not come into play.

Time for a happier note. I got to spend a long week with my fiance in Virginia. Even though we did not do anything incredibly exciting, we always have fun. I miss him already and I often wonder why our fun is so short lived and I have to go back to the mundane medical BS. I wish he was with me everyday as I go through this.

Especially this Thursday, this Thursday is my 1st Rituxan infusion. I am a bit nervous about this one for some reason. It seems like my last resort. I hope with everything that it works. I can't battle heart diseases, RA, and anything else. Here's to hoping.

Thursday, September 13, 2012

I'm A Loser Baby....

Let's all cue the music and shout at the top of our lungs.... I'M A LOSER BABY, SO WHY DON'T YOU KILL ME!!!

I love my 9th grade self. Okay, enough with nostalgia. I'm writing on the hell I have been through this past week.

Let's rehash.

Monday: The elusive and exclusive Duke Rheumatology appointment took place. I actually liked this Rheumatologist. She was sharp and empathetic. She understood what dire straights my body was in. The only thing I didn't care for? Her tiny tiny stature. I hate tiny doctors. They look like little elves. I want them to offer me Keebler cookies and pop out of the bottom of a tree. During my physical joint exam I thought I'd break her and at one point expressed my concern of breaking her. She laughed. She said my case was very difficult and with all past and present info, labs, and what have you provided...she said she would have to think long and hard about my case. She took Amyloidosis seriously, so she may put me through the testing for that. One thing I failed with flying colors? My blood pressure. It was through the roof. She was so concerned that she wanted me to see my primary right after her appointment. I didn't think it was that big of a deal and they tested my BP about 8 times and then I felt stressed to pass the test! Ugh. So I went to my primary and since I have the diagnosis of tachycardia and concentric left ventricular hypertrophy, I was put on heart medication until I was rushed into a cardiologist.

Tuesday: I was forced to lay low and take my heart pills and was told that I am seeing a cardiologist on Wednesday. Wow, that was a bit too quick in my opinion. That can't be a good sign. 

Wednesday: See the cardiologist. She was another sweet, empathetic, and tiny tiny doctor. What gives with the elf doctors? She is very concerned about my enlarged heart, fast (beyond fast) heartbeat, and high blood pressure. She listened to what my last 5 years with RA consisted of. She was sad for everything I've been through and she really explained how my RA is now in my heart. Rita knows no bounds. She added two more medications to the other heart pill. This pill is a combo for my heart and BP while the other is just for my heart. So I added two more pills to my 12 pill regiment and infusion regiment. I have to wear a halter monitor next Monday until Tuesday. I have heart fluttering issues as well that need to be monitored. 

I picked up my new script up from my pharmacy, and my two pharmacists know me too well because they see me so often. My fav pharmy saw me and said "Uh oh, someone is in trouble! Did our RA finally reach the heart?" I laughed and said yes. I started my new pill today. I feel a bit light headed and pissing like a race horse. I am hoping for ankles again between RA swelling and heart swelling. Let's hope. There, that is the silver lining I can come up with. 

I'm dragging my ass this week. I was on goal to get my infusion this week but now it is next week since I start Rituxan. I have to admit I am nervous about that infusion. I am one of the 2% of patients that get severe reactions to meds and I know this one has a higher risk of it. Plus, it's like 6 to 8 hours long. Yikes, I want to buy an I-Pad just to pass time!

....but I am saving my pennies for my wedding. Which by the way, today marks 1 year exactly until I say I do. I hope nothing majorly goes wrong before then, health wise. If so, I am not opposed to moving my wedding up. I want to die married, not single. Hahahaha.

Friday, September 7, 2012

No Whammies.....No Whammies....

Let me first commence this post with the meaning of the title. Remember that awesome game show from the 80's, Press Your Luck? The Whammies that would come strolling across the bottom of the screen as that life altering whomp whomp sound blared and your lucky cash flow was robbed from you? I hit the jackpot of whammies both yesterday and today. 

Earlier this week I had an echocardiogram for my heart due to persistent shortness of breath, odd fluttering in my heart that lasts for only a few seconds because my body corrects it by coughing, ridiculously high and persistent CRP (inflammation markers), and a rapid resting heartbeat. So, I sucked it up for another new test and yesterday evening at 5:30 my doctor's nurse calls. My echo showed concentric left ventricular hypertrophy. Rather moderate to severe. WHAMMIE!

I sat there shocked and stunned and quite frankly, peeved. Peeved that something else is wrong with me. Peeved that I am so genetically fucked up. Peeved that I had an important consultation with UNC Fertility the very next day. Peeved that I had to add that to the thickest patient file on the planet. Now what? I have to see a cardiologist. My friend is a cardiologist with Duke, no now with UNC. I asked my doctor if this was RA related. Yup! Ol'Rita finally did it, she managed to give me heart disease. Those of you who don't know (not my subscribers because they are up with the lingo and hurdles), Rheumatoid Arthritis is SYSTEMIC meaning it not only attacks my joints, tendons, ligaments what have you it attacks organs, especially lungs and heart. When people pass from RA, it is usually because their lungs or heart were so riddled with the disease. So please, don't think we die from pain and joint damage.

My fertility appointment today was another Whammie. I knew going in (especially after last night's heart disease development) that I would not be the healthiest contender. I was pretty much told that I was genetically undesirable and any pregnancy would be too high risk to a carried baby and too high risk for me due to pretty shitty management of my disease. Now, add the heart dice baby! WHAMMIE!

I guess my heart made the choice for my womb. I will not have to detox any of my meds and I will start Rituxan on the 20th as scheduled. I have to see when I see the cardiologist. I gather that will be soon. I still see DUKE Rheumatology Monday to see what their advice/opinion is. I'm hoping for no whammies! We'll see. I am a bit shellshocked as I type this. I feel like I seriously failed my fiance and he totally did not pick a winner with me. I know it does not matter to him one bit, but I can't help but feel like a failure. A lot of stuff is just not meant for me in this lifetime.

Wednesday, September 5, 2012

How Does One Choose?

I'm in a pickle blogsphere readers.

This Friday I have an appointment with a fertility doctor in hopes to retrieve eggs before Rituxan starts. Here's the dilemma, a week before any scheduled infusion my body starts to fail me on so many levels. I can't make it the full 4 weeks for the infusion. How am I going to detox on all of my meds and not receive infusions when I already feel beyond bad? I really despise making these decisions. My fiance wants to have a baby with 95% sureness. He waivers on the 5% because he knows what a strain this whole procedure (from detoxing and withholding on important meds to hormone shots to pregnancy on my body). I get that and love him for those concerns.

I'm willing to bite the bullet and go through hell in back with hopeful viable eggs for later IUI's or IVF's. I am trying to secure us a future now before it's too late. I'm just torn. I know my body needs the RA meds but I need to know how much is too much when it comes to sacrifice? I'm so torn and these decisions are beyond difficult.

Ugh, I need guidance friends. I know I have rational thinking followers. Please help me come up with an answer I can live the rest of my life with.

Sunday, September 2, 2012

Celeste + Jesse = Forever

On this beyond muggy, lazy, and oppressive for the 2nd day of September, I ventured to the movies. I love going to artsy/indies/foreign flicks. I have not kept up with the various movies as of late because summer is not usually my season for my above mentioned likes. I saw Celeste and Jesse Forever listed. I have not heard about the film nor have I seen any promos. I read the synopsis and watched the trailer. Looked decent enough to me, hey, it wasn't a giant summertime shoot'em up movies.

I sat there with four other people. As I watched the movie I realized I was Celeste. The uber Type A, anal, always right, cavalier, just plain know it all. Her marriage failed because of these facts and she lost her husband/best friend. Through the movie she realized how and where she went wrong. I won't give away the ending.

The point is, I learned a lesson from the movie. Being always right and pessimistic is like living in a prison. I, too, could lose my relationship if I continue this path. I haven't been pleasant to my fiance and I went a step too far last night but quickly realized I didn't mean what I said and apologized.

I have to work harder. I know I am not perfect. This is all new to me.

I wonder if something like divorced occurred in our relationship if he'd ever remarry and if he did, who would the woman be? I thought about that during the movie. I know it is hard to see someone move on without you.

Here is a trailer to the movie. I recommend it!