Tuesday, July 31, 2012

Wedding Blues

I have been MIA for good reason. I was in NYC for a big family wedding. I was excited to celebrate my cousin's wedding, but man did it come with major pain and a trip to the ER.

For those of you who know, I am engaged. I was engaged 11/22/11 (easy to remember, right?). I finally solidified a wedding date. We plan to get married 9/13/13. Yes, it is a Friday the 13th. Like the day I was born. It's a lucky day for me and the 13th year must bring luck. Lord, knows I need it ahaha.

So, I have been looking at wedding magazines for ideas and researching the interwebs. One major thing is holding me back from my wedding day, and that thing is unfortunately Rheumatoid Arthritis Rita. As I look at all of these beautiful weddings in the magazines and sites, I just sit there and get depressed. These are my thoughts:

1. After two major knee surgeries and bum joints, I can't wear heels.
2. These damn dresses look too heavy to lug on my body.
3. I can barely cut my food, how can I cut cake?
4. I can't dance without paying.
5. I can't drink because of my damn meds!
6. I get so fatigued easily, what am I going to do? Take a disco nap in the middle of my wedding?
7. What if I feel like absolute shit that day? I can never tell from hour to hour let alone month to month.

The thoughts are endless. So, I have been thinking about this since November. Then before I left for my cousin's wedding, RA Guy had an interesting post from a female RA bride. She posted an interesting post on weddings and RA. My biggest fear is knowing planning a wedding comes with stress and we all know stress does not help RA, in fact stress can literally kill us.

If you are a RA bride, or plan to be one, please check out this post. It calmed me down a bit before I left for the family wedding.

The link is (hit it): http://www.rheumatoidarthritisguy.com/2012/07/claire-my-wedding-with-ra/




So, here I was thinking all would end well.

Baaaaammmmmppppppp, not so much.

I don't know about any of you but the thought of travel never ever freaked me out. I have traveled so much before becoming seriously ill. Now, traveling on a one hour and 11 minute flight flips the hell out of me. Between lugging all of my meds through security, to walking, to standing, to sitting, to having no leg room for a leg that barely bends really becomes full of anxiety.

Then staying at someone else's house that is not your own is scary now. I have a walk in shower because of my RA. Regular tub showers are difficult. So much so, I bit it hard in a slip and fall accident in one last summer after my knee surgery. I could have really set myself back big time! I don't have access to my heating pad, my ice packs, my bed, my thousand pillows I use for a cocoon. The list goes on. What the hell has happened to me? I have turned into such a travel wuss now having RA.

During this whole past week, I was having lower back problems (never have that). My back pain is usually in my thoracic portion of my spine where I have stenosis. So, I tried ignoring it but each day it was getting worse and worse and then the most intense burning pain and numbness was occurring down my whole right leg. So much so, I was unable to feel my right foot. I was trying to be a trooper and carry on in order to get through the wedding.

The wedding. So, I can't wear heels and I am on the taller side at 5'8. I'm one of the tallest cousins and my other cousins wear these sky high heels and wedges. Then I feel like a shrimp. I get weary if places like the catering hall have steps, if the floor is too shiny and slick, if the seats are comfortable. How can I sit for too long and not look like a spaz ready to blow? I sat through the reception. Okay, that wasn't as bad. Then, the dreaded happened. We were ushered to another room for cocktail hour. There were stairs, and a slick floor. Double whammy. I luckily made it, not so gracefully...but I made it. At this point, advil was wearing off and so were my pain patches. At that point, I threw RA caution to the wind and had a cocktail. Damn did that cocktail go down fast.

We sat there for an hour or so. All was okay. I didn't eat much because it required too much walking and coordination from station to station in shoes over slick floors. Then we were ushered back up the stairs to another room where the reception was held. Damn was that floor slick. It was nice seeing everyone dancing and drinking and having a great time as I sat there in my uncomfortable chair like a lump on a log. As I was sitting there watching my youth pass me by and all the young healthy cousins have fun, I just sat there feeling useless. I sat there drinking cocktails right and left in hopes that the pain would shut up. I felt like I was becoming a one day alcoholic. As I sat there slamming them back, I became pissed because this is my new life, my new normal. I kind of got wasted because I wanted to numb the pain and because I was pissed. A bit self-destructive, right?

I want an old fashioned wedding like my cousin had but I sat there that night thinking what I couldn't do as a bride from heels, dancing, drinking, and stairs. There were so many stairs that anxiety took over. I got to sit there at an empty table while all my younger cousins got to dance. It depressed me. I tried pulling one for the team but it put me back in a dark place. Plus, constant intense pain that was working on a week wasn't helping.

Saturday was the travel day from hell. Let's just say at JFK I stood for 3 hours straight, sat for 7 hours straight, and cried myself all the way home on the plane that got struck by lightening and was the bumpiest ride of my life. Yep, that didn't help my damn pain.

I got home early Sunday morning without my luggage and had a serious meltdown of pain. I cried so so hard from the pain. I tried toughing it out Sunday but come yesterday I couldn't take it anymore. I called my doctor and she's on vacation. I wound up going to the ER. My diagnosis, siatica!? I think a slipped disc is causing that issue but I have an appointment with a spine specialist in August. ER doctor blamed it on a major RA flare from all of the stress and the inflammation is attacking my nerves again. I was loaded up with pain drips that knocked me on my ass. I was put back on prednisone and pain pills. I wasn't too happy. By the way, I am hungry as I type this and I just had dinner. Yep, it's going to be a long 8 days.

Traveling really did it to me this time. Yikes. Now it is official, I have the wedding day blues. How will I be able to be a bride if I can't even make it as a wedding guest?

Saturday, July 14, 2012

Let's Go Back To The Start

You know that song from Coldplay, The Scientist? I know the song is about a failing relationship and all but it really has always spoken to me. A couple of lines strike me in that song.

"No one said it would be easy. No one said it would be this hard." (Truer words could not ring true about struggles with chronic and systemic diseases.)

"Let's go back to the start." (How I wish I could go back to the age of 5 or so where pain didn't touch me.)

This song has spoken to my feelings about personal struggles with RA. All day yesterday, last night (woah last night) and all of today have been absolutely horrid in the chronic pain department. Last night was actual acute take me to the ER department pain. When my pain becomes that intense, I get panic attacks. I can somewhat deal with the pain yelling at me during the day but at night I just want to shut off and shut down. My mom was trying to comfort me the best she could and asked what she could get for me. My retort? "A shotgun." In a difficult part of my life a few years back, I almost ended it all and my retort upset my mom. I know I can go on 72 hour lock down for saying that but my pain just speaks for me. 

During my chronic pain that turned acute I decided to take a grainy self portrait in the middle of my anxiety ridden panic attack of me biting my lip, something I often do when the pain is unbearable. My cheeks were flushed from feverish frustration and tears were starting to well. I wanted to take this self portrait to chronicle the lowest depths of my battle with this damn disease. I want a reminder of what pain looks like on my face. My face says it all, it always has and always will. I'm not a good poker face. 

Back to the self-portrait, here it is.


This is the part where no one said it would be easy, but no one said it would be this hard.

Take me back to the start of painless innocence as seen here at the age of 5. Happy and carefree.


The science of progress hasn't seem to help my pain as much and I fear I will have to go see a pain management specialist soon before I get that shot gun again. 


Wednesday, July 11, 2012

Odd Thankful Thoughts

Since my hand surgery, I have been on hand hiatus. I have taken a medical leave of absence from school. This leaves me more time to think, which is not necessarily a good thing for me. See, I think too much. I am on medicine to shut some of my brain off. Thinking gets me in trouble. However, today I was thinking whilst watching Grey's Anatomy reruns on Lifetime. I never saw that series from the beginning. As I was watching this Hollywoodized story line I got to thinking thankful thoughts about my RA. Most people would find these thoughts morbid or morose but these thoughts really came from a thankful place.

Due to limitations (both physical and physiological) of RA I am glad I did not follow the following physical pursuits, pursuits that you make a living from:

1. An athlete
2. A surgeon
3. A concert pianist/cellist or any type of musician
4. An artist
5. A professional dancer
6. A firefighter
7. A police officer
8. A dentist
9. A chef
10. A farmer

The thankful list went on and on. I am truly happy that my brainy self stayed buried in books and research because if I worked so hard to achieve any of the listed professions then was diagnosed with the level of RA I have, I'd have really been screwed and mentally dead. I guess there is a weird silver lining there. Buried deep but present.

Monday, July 9, 2012

Experimentation

 
I don't know about you but I don't take my Rheumy's word to the bank. I don't let it be all end all of anything. Call me stubborn, call me smart, call me stupid. That is what happens when you have a thick skull, a fierce independence, and a brain that functions.

Lately I have been stewing about Arava. It really ticked me off that it has so many side effects and the major one being deformed/malformed babies. I am not ready for a baby but I don't want to be told no when I am ready. So, I took myself off the crap. It was giving me horrible GI issues that are not safe to mention, and quite frankly too gross to share. I have been off it for about 3 weeks, and guess what?

That stupid crap was making a difference in my RA. Ugh. I hate when my experiments do not conclude with my original scientific hypotheses. I have been so stiff, so inflamed, so swollen, and so full of pops and cracks. Damn it, I have to go back to that crap and suffer the GI BS and the no babies side effect as well. I really wanted to know if it was worth enduring the side effects and I guess it is because for once I am able to say...I notice a difference with a RA medication. I will never ever tell my Rheumy this. We kind of do not know what to make of one another. She laughs at me when I say something I didn't find funny. Last time I checked, I was not a RA comedienne.

So, here is to swallowing that damn crap pill tomorrow and let's hope I did not screw up beyond RA repair. If I was able to physically cross my fingers, I'd be doing that now. For anyone who reads this and your fingers function properly, could you please cross your fingers in my Arava place? I'd appreciate it.

Half of meds lead me to sing..."I'm on the road to nowhere" because sometimes I feel my pills are just placebos or "sugar on my tongue". You know, my 52 year old sister (a huge Talking Heads fan) would be proud of me for those references. She taught me to be the only kid on the block to adore the Talking Heads and the B-52's in 2nd grade.




One of my absolute favorites from the B-52's.....just as an added bonus.



Sunday, July 8, 2012

Happy Belated July...Swelling

I have sucked at blogging lately. I apologize. We last left off with me getting my stitches out. That happened successfully (yet mildly painfully). The doctor spoke with me and further described how I was a freak of nature. Please know that every surgery I have had (and I have had way too many for my age) every surgeon has noted that my anatomy being operated on has had a rare complex layer. This time, my muscle belly is supposed to be lower towards the area of my wrist, mine was smack in the middle of my palm. Dr. Andrew noted on out of his thousand of surgeries, he has only seen this twice (be being twice). My recoup time is about 3 months. That is a far cry from a few weeks I was told. Driving is difficult. I still have swelling and bruising. I still hurt in that area. In due time it will be better.

Now, on to the shits and giggles of this post. Remember how I was suggested to the exclusive and often times elusive DUKE Rheumatology? Remember how a couple of months ago all I could be scheduled for was late November? Remember how my doctor told me to call them everyday until I got in? I decided I did not have the energy to call, so I decided against it and I was going to wait my time. Well, an odd twist of events happened. A couple of days after my surgery Duke called. I was a bit spaced out on Demarol and the nurse told me that after reviewing my file I am considered a "critical care patient". My fuzziness was kind like "oh, okay thanks for calling". The nurse laughed and asked if I was okay and I stated how I just had surgery and was out of it. She said she would get what she needed from my current Rheumy and I couldn't remember how I left off with that lady. Hell, my fuzziness did not even remember her name or number or where I wrote it down. This past week DUKE called again and said since I was a "critical care" patient the doctor could see me September 10th! September 10th?!?! I laughed and said that is what critical gets you bumped up to? The nurse even laughed. She apologized but I said well I guess that is better than late November. Hopefully I get moved up even further because this past week Rita took a Rheumatological dump.

Summer sucks for Rita. I know warm (here is more like blistering) weather helps other RA patients' joints and bones.....mine being a hell raiser is opposite. Rita just despises the heat and she definitely takes it out on me. While others were enjoying 4th of July festivities of eating, swimming, and playing....Rita decided to attack my ankles with full swelling force. Whew, did she ever. My feet were literally swelling out of my shoes. I was in so much pain and my ankles locked due to the massive amounts of swelling. My fiance was down for the 4th and even through my pain, crankiness, and disfigurement he still loves me and tells me I am beautiful. I don't think many men sign up for women with what I consider to be more than cankles...it's more like club ankles. My mom wanted me to document my swelling for DUKE.

I laughed because I still feel like I have to prove to doctors that I have RA. Why and what gives with that is beyond me. All of my numbers light up and yell "HELLO THIS BODY IS AT WAR!" and my joints show it too but I still have that mindset that I have to fight to prove. It's a weird feeling that I cannot really describe. I guess it goes back to my childhood and telling my parents that "my legs hurt". They were telling me it was growing pains. Then they took me to the doctors when my knees were the size of watermelons and no doctor took the time to hear them out. So, I went many many years undiagnosed and in pain without crucial meds to help get my immune system under some sort of normalcy.

Weird how past medical hangups get you now. Not many normal healthy people have those types of hangups ahaha.

Here are pictures of my documented club ankles.








I really get grossed out by Rita and looking at the swelling and disfigurement with your own eyes is one thing, but seeing the proof through the lens of a camera is another.