Monday, April 30, 2012

Babies

I know I posted about children here before. With my meds I am unable to get pregnant by accident on my wonder drugs (I use wonder loosely). I am 33 and running out of time. My fiance being nice was trying to hold out and go with the flow and indulge me on my quest of talking to geneticists in regards to both of our autoimmune diseases. Today he saw his Rheumy and his doctor asked about having children. He said he was open to it but the doctor reminded him of a gene marker he has for his disease and how since it is positive for him there are significant chances of passing that gene on to our child. I know what he has been through and I admire him greatly for the strength and dignity he has shown during his struggles/pain/surgeries. I didn't admit to him that I kind became weepy after we hung up. That was the last nail in the baby debate coffin. I don't want to be selfish in passing on bad genes to my baby. It's not fair to them. I know this sounds awful but it is coming from an honest place in my heart. I cannot stand seeing dwarves having children full well knowing the chances of their baby having dwarfism is great. They know the struggles they dealt with in life, why would you want to do that to an innocent soul?

Granted, I want to be selfish and have a baby and know I can share all of my love with them. Teach them what I know, show them all of the great things I have seen before they entered my life...know I made an awesome soul with my fiance....have the chances most women get to have and experience. I often wonder why I have to deal with all of this? I know I can sit here and analyze and search till the cows come home but it won't do any good. My dad felt badly for me as he saw me crying in the kitchen. He said, well...we'll help you adopt! I looked into that. People with autoimmune diseases at our level are placed at the bottom of the list. I told him that and he honestly (yet let me state jokingly) "well, I'll steal a baby for you." His heart is in the right place because he knows once him and my mom pass, I'm alone as an only child with no real big family to speak of. The fear of being alone has been eating away at me lately. I noticed as my parents age it is becoming more of a realization. I don't want my fiance to ever think he is damaged goods because of his disease, both of us simply did not win the genetic lottery. That is a simple finite fact. I guess I have to pick myself up once again, dust myself off, and forge ahead into an uncertain future with no baby to love. I wish I could have shared that experience with my fellow females but I know now I have to give up the ghost.

I just sighed and stared off into space. I go away, I go my own way....


Saturday, April 28, 2012

Economic Musings

I just want to state that I do not know what giving birth feels like. I doubt I ever will. However, I did have a kidney stone for 3 weeks because I was too afraid to have the surgery. I willed that sucker to come out. My doctors were amazed at my pain tolerance. Again, doctors noting my high tolerance for pain.

Today, I gave birth to a bouncing 10 page paper baby on the oligopoly of the healthcare industry. Yes, I really am comparing my paper to childbirth. I have such a headache from Economic jargon. It is a doozy. It was rather entertaining to type my paper with my RA glove for swelling and pain.


Lovely isn't it? My fetching glove conjures up a hip RA version of the dearly departed Michael Jackson. This glove slows me down quite a bit but it helps with this one swollen knuckle. The arbitrary ways RA picks certain areas each day is nuts. I really wish I could get a hold of that bitch and predict what days and areas she'll strike. I learned to predict economic market shares with elasticity, inelasticity, and efficiency...yet I can't predict Rita?

As I was thinking and typing away, I came across one my old books I bought when BORDERS Books was going out of business. What possessed me to buy this book a year or so ago is beyond me, however the damn thing came in handy today. New Ideas From Dead Economists is where it's at folks.


Just kidding everyone! This book blows and at one point the mindless drone reading made me wished I too was a dead economist! I seriously despise economics. I am all about loving to learn new areas but this area is soooooo not me.

I took my scheduled Rita break where I stand up all stiff, popping, cracking, and creaking. As I walked by one of the rooms, I saw my cat Remi sunbathing without a care in the world. Lucky but beautiful bastard. 


On a happier non-economic related topic, my Show Us Your Hands mentor/leader Cathy e-mailed me a rough draft of my page for the book they are working on for Arthritis awareness! It looooks sooooo AWESOME! Also, I am the 13th page! What are the chances on me landing on my lucky number?

I love coincidences like that. I can't wait to see the whole book with everyone's submission. I hope it furthers awareness that many diseases we have are not simply Arthritis. I think I would take regular arthritis any day over Rita.

I am taking a day off tomorrow. I want to see the 5 year Engagement movie. I might as well take pointers from the movie since I am heading down that long road too. I so can't wait to blog about wedding preparations while having Rita. Will I be bridezilla? No, hahaha. Simple and sweet is my route.

Wednesday, April 25, 2012

I've got Chills and They're Multiplying

Last I left off, I saw the hand doctor (who without official confirmation) determined I had RA inflicted carpal tunnel. In order to determine for sure that I do in fact have Carpal Tunnel I had to have some electric convulsion test done on my nerves in my arms and hands. I did not Google what I was in for whatsoever. I made that grave mistake once for a previous surgery and I scared myself half to death and swore off looking anything up like that again.

Yesterday was the big electric nerve test. In my mind I pictured STEMS you get at PT that help contract muscles. Baaaaammmmmp. Not right at all. This test was a series of electric shots that made my whole body jump in some cases. It hurt so freaking bad folks! I thought that was the end of the test after 30 minutes of twitching and being electrified and electrocuted. Well, I was sorely (and soar) mistaken. Then came out a huge gauge needle and it was jammed in various muscles all up and down my arm and hand to hear sounds of nerves like a doppler or ultrasound. I saw stars. The doctor said I would be "twitchy and feeling electric shocks" after the test. I didn't go to bed until after midnight because of the twitches and electric shocks. I'm still feeling it today quite frankly. I am by no means a baby. I have been commended on my high pain tolerance from other doctors. I didn't show my pain to the doctor but I did shed a few tears in my pillow last night. The test already came back with rather moderate carpal tunnel. I see the doctor again on Tuesday to hear and evaluate my options. I am not one for surgery and I wanted a year without surgery but my hands are really becoming a numb, achey, and tingling mess. Holding writing utensils or eating utensils has become sad (we passed the comical stage). I did Google results of this surgery to release the ligament and let the nerve breathe surgery and everyone reported good success rates with it. I might bite it and do it because I still have half a Master's to get through and I'd like to eat like a normal person again (not a 4 year old). What should I do? I'm looking towards my small fan base for suggestions.

I did go to bed singing this.....my whacky brain really needs to stop sometimes.

The chills were more electric shocks, they were multiplying, and my limbs lost control and flailed when being zapped old school Inquisition style.


Tuesday, April 17, 2012

Birthday Weekend and What? RA inflicted Carpal Tunnel?

I had a fabulous birthday. Way way better than I thought it would be. I had a wonderful day and weekend with my loved ones. Here are pictures of presents, cake, roses from Ol'WW, a picture of the dinner theatre show we attended in VA. I didn't think 33 would be all that bad....until today ahahaha. I thought I wanted a year without surgery?

First my happy place pictures...





I'll always have my happy place pictures to remind me of my 4 good days of 33.

A week or so ago I broke down made an appointment with a hand specialist. The numbness, burning, and atrophy were main concerns due to the constant nature of them. Holding eating utensils and writing utensils have become a real heavy and painful chore. It has been there a while but it seems to have become worse these last few months. So, I saw the hand specialist today. I usually hate ortho doctors by their snotty God-like cockiness. However, my hand doctor today was a real good guy. He came in asked me many questions and was bothered by the fact I have Rheumatoid Arthritis. Hey doc, so am I! Hahah. So he did some hand tests on me and told me I failed all of them. He said unfortunately due to my out of control RA (I received blood test results yesterday that were a complete smack in the face), I have a pretty acute case of carpal tunnel. He was telling me that since RA is essentially a synovial disease, it affects the ligaments in my hand along with nerves (the median nerve to be exact) in my hands. He ordered a nerve conductor test and said it will not be pleasant. I said to him that I was actually used to pain and have developed a pretty decent tolerance to pain. He looked me dead in the eyes and said that in all honesty and sadness that  is how RA people have to get by, or else we would go nuts. Finally, a doctor who is sympathetic to my disease. He really understood the ins and outs of my disease and how it affects areas on the body. He said I only had three options and he started the order today by giving my wrist splints to wear all night long. Then he said steroid shots are next but that just buys be a couple of months. Surgery will be the only thing that will help me. I am hesitant due to all the school work I have but he said it will only get worse in my RA specific case. I am placing a lot of hope on these braces. That's for damn sure. Wish me luck readers. I don't want 5 years of consecutive surgery. Then again, getting rid of all of these symptoms would be nice.

Ugh, I hate these types of decisions. I just want normal 33 year old decisions, not this.

Here is a picture of one of my braces.



Let's just hope this is the answer!

Thursday, April 12, 2012

Palindrome 33

In less than 2 hours I turn a new age. Am I happy? No, not really ahaha. I am happy though at the face my birthday falls on a Friday the 13th. I was born on a Friday the 13th. I feel it is a lucky day despite the popular consensus. I have big hopes for this new age. Let's hope it all comes true whether through hard work or just luck. I would opt for luck in all honesty, I'm tired of hard work.

One bonus and real kicker? Robert Smith from The Cure was trying to communicate with me on their latest album 4:13 and Dreaming. That is my birthday! 4/13! Oh Robert, you need to come find me and marry me. My fiance howls every time I bring this up. He never cares because he knows it will never happen.

4:13 was not my favorite Cure album but I love my birthday shout out!!

I shall fall asleep to this tonight.


Here's to my new age tomorrow and relieving my youth!


Happy Birthday to me!


I heart me some Bjork!

Wednesday, April 11, 2012

Poor Puffy Face

Today is one of those days where I have to bitch it out here hoping other RA sufferers, and well others with just common sense understand my absolute frustration for Puffy Face Gate 2012.

Here is a photo I borrowed from US Weekly of Ashley Judd. Pre-puffy face and post-puffy face (her face is not as puffy now).


Two people that just have always gotten under my thin skin was a) Ashley Judd and b) Chelsea Clinton. I understand that it is not nice to say you hate someone you never met and all of that PC hooey (yes, I just typed hooey), but I HATE Ashley Judd and Chelsea Clinton. I cannot rant about Chelsea today because she really has not been in the mediocre spotlight much lately. Now, I can rant about dear Ashley Judd.

I despise Ashley for two main reasons. One being her absolute secret vilification of her sister Wynona (is that the bigger red head sister I am thinking of?) Judd. Ashley has this air of academic, aesthetic, and moral snobbery working for her. She always is condescending when speaking about her sister and her weight issues. She sits on her bedazzled throne and throws stones while scoffing at her sister. This is evident through interviews for media and publications. The other reason I have pure hatred for Ashley solely rests on her academic laurels. If I hear she went to Harvard one more time, I think I might regurgitate. She tosses out 10 cent words right and left as though the rest of us average Joes are blithering fools with no education. It infuriates me!!!!! Can you tell?

Tonight, I watched poor Ashley getting heated up about the media's portrayal of her puffy face on the NBC nightly news. People insinuated she had work done and that is why her face is puffy. Now personally, I really could have cared if she had work done. In fact, I wouldn't be surprised if she did because she fears the step-sisters of ugly, fat, and uneducated. However, now I care why her face is puffy and it angered me more how she tossed out the fact she was on a course of steroids to help a sinus infection. Okay, now that light hearted answer pissed me off.

Hey Ashley! Try and take a course of steroids many times a year (sometimes never getting off them) because you have a sever auto-immune disease or cancer (since steroids are given to chemo patients to assist with nasty side-effects like nausea). Try gaining weight you don't want, didn't ask for, and don't deserve because you were given a disease you didn't want!!! Try having a constant puffy face or moon face because of these drugs. What a medically uneducated, unsympathetic, whiny little twit.

I swear I want to write her a personal letter explaining how people have it way worse than she does (as people have it way worse than me) and how she should shed light on the use of steroids for the above listed conditions.  Shed light for the people who need to understand that not everyone is puffy or bloated from eating too much processed gluten-full food, but because steroids are an option to help people. Oh how this interview with her enraged me. I should CC this rant to Brian Williams on the nightly news show he hosts.

I think the beautiful movement of Show Us Your Hands should have Show Us Your Puffy Steroid Face. Perhaps the world will know why some people have puffy faces and perhaps Ashley understands the severity of steroids for serious diseases.

I know, I know..... shake it off.




Monday, April 9, 2012

Of Course I Get the Disease Centered Around Stress

 When I was first diagnosed with my nemesis Rita doctors kept telling me I had to slow my pace down and don't be as stressed. Slow my pace down and don't be stressed? Who in their right mind doesn't get stressed? Okay okay, I do stress easily and I understand when stress is being absorbed cortisol levels increase. I get the biology and chemistry of stress just not the how to not be stressed part. Being diagnosed working full time and attending graduate school full time was no easy task. One doctor felt that lethal combination was the straw that broke the camel's back. Maybe, or maybe it was just the genetic jackpot. We can argue what came first the chicken or the egg....I just want to know what can help me not be so stressed!!!!???!!!!! I am on a myriad of pills to help that but today came smacking me in the face. The stress of this Economics course is bringing Rita out in all her mean spirited glory. She quite frankly knocked me on my ass yesterday. I think my brain actually thought my body was losing it. I tried resting the stress away but as I was in my bed, I kept thinking about Economics and all that I have to get accomplished this week, how I was going to accomplish it, and how I was going to freaking pass. I started stressing myself out into a full blown panic attack. Which of course made Rita worse.

I went to bed wondering how me of all people got stuck with a disease that stress makes the symptoms worse? I think stress does not help a lot of diseases but I know the quantitative research that backs up stress being a giant no-no for RA patients. I now am in a flare. A big one. I feel this one might be a doozy. I feel the burning on the inside of my joints, deep in my joints. I never think my actual skin on the outside of the joint gets hot....but today it was so hot it melted an ice pack in a matter of minutes. Rut roh, this isn't a good sign.

I should listen to my body more about calming down and resting more but I was not built that way and I wish I was able to train myself to be otherwise. Yes, I have taken yoga. I was actually dismissed from yoga for laughing too much. I was laughing at the non-sensical aspect of picturing myself floating down the Amazon river per my yogi's instructions. I laughed out loud and said rationally speaking, we'd be chomped up to chummy bits in a nanosecond by Amazonian crocodiles. That was the end of that. I'm a smart ass with quick and quip responses, what can I say? I am who I am.

I actually hired a tutor today to help with the stress load. I never ever in my life have asked for help before and this is a big hurdle for me. I despise showing weakness. I have become worse with that aspect since being diagnosed with RA. I just feel the stronger I portray myself the more others will leave me alone despite disability. I see it as a preventative self-defense mechanism.

I hope the tutor helps with my stress load and I actually retain some of this Economics bologna. I just need Rita to calm the heck down so I do not look nor feel like this picture.


Pain can truly wear one out and only people who deal with pain (be it emotional or physical or both) can understand and sympathize with this picture. Every item in this picture that is circled might as well be circled on my body in permanent ink. This is me everyday. I don't want to be the hunched over person withering in pain and erosion. I want to be tall and expressive and carefree. I don't know if I will ever get those days back as this is my new normal. I still want to fight the new normal everyday though.

Pain makes you go insane in the membrane. 







Saturday, April 7, 2012

Happy One Year Anniversary to my Right Knee

Today marks a whole 365 (well really 366) days since my major knee surgery last year. In one of the last ditch attempts to help my RA knee, doctors broke my bones, cut my tendons and screwed my tendons into my knee in hopes of salvaging my kneecap. After many months of pain, using a walker, then graduating to a cane, many many many months of PT, gyms, pool therapy, and braces...I'm here to say all I have to show for it is one gruesome scar, two screws, and a wobbly swollen knee. Oh well, I hoped for the best and received less than best. I guess that is what happens when you take your chances. At least I have my leg and can walk somewhat decent. I still have a limp and can not do oh about 70% of things normally like stairs (ascending and descending), kneeling, stooping, bending, running, jumping....hell this list can go on. I am glad that I took pictures of my bed ridden and therapy filled days. It helps me realize where I was and where I am now.

I also received the loveliest love letter around this time from my then kind of sort of boyfriend (Ol'WW) and a birthday/surgical get well gift that brightened my day and continues to brighten my nights when I sleep with it.

Take a walk down memory lane with me.


Surgical stalking suck. I had to wear that along with the brace for 3 months.


I still have my jazzed up walker in anticipation of other knee surgeries. 


My cat Claude would always (and I mean always) lay by my leg when the pain was rough and he would guard me at night to make sure I was okay.


PT became something to look forward to because it was time out to socialize. How sad ahahaha.


BEST GIFT EVER!





Thursday, April 5, 2012

In Terms of My RA, "It's Like That and That's The Way It Is!"

What in the Sam hell? Yesterday I did something I have not done in ages, I took notes on a mind boggling subject matter.....ECOFREAKINGNOMICS. I religiously read and wrote notes with fervor. I have been noted to have the tightest hand tendons by multiple Rheumies. I ignored them and my screaming tendons and felt that I had to get back into the swing of taking notes with my once beautiful handwriting.

**Sidenote- I really at one time did have beautiful handwriting. That is quickly fading away because of my hands and fingers**

Back to my rant...at the end of yesterday I was feeling the pain in my palms and fingers. I tried wrapping them in a moist heated towel. I threw away my sand. Has any other RA patient been told to buy sand for sandboxes from Toys'R'Us and heat it up and place hands in said sand for 5 times a day to help relieve tight tendons? I looked at that whacko after he told me to pretend I was at the beach. I quickly retorted, "I wish having RA was like a damn day at the beach! That means I could actually stop being a vampire and get some sun where meds for RA don't break me out into blisters and rashes. It also means that I can stop taking 50,000 IU's of Vitamin D, have a drink, and pretend life is just one big beach party!" What a complete asshole.

I digress, I heated those puppies up last night, took my usual nighttime regiment of RA drugs and during the night I had one of those dreams again. I always have a dream that could be about bunnies hopping in a meadow. Then all of a sudden the dream stops and a version of me is in my dream saying "I hurt". I really despise those dreams. Sleep has been awful since RA has become worse. No position is comfortable for any joint and I just want to escape for a few hours in a pain free place. Is that too much to ask for?

I woke up this morning barely able to open my right hand. When I did my RA finger exercises before opening my eyes, something felt completely off. A digit was not right. I opened my eyes and looked. My right thumb (which has some erosion) was completely whacky and bent/curved off in a direction I never saw it before. I kept hoping it would go away or go back to what its old normal was, but as the day progressed, it stayed the new normal. I never thought a thumb or fingers could hurt as bad as some of my afflicted major joints do (hello right knee you are the size of a watermelon today). Whew this sucker has been a mess today. I had another chapter to read and I did not dare take notes. Actually, I taught myself not to type with my thumb today. That was a tricky deal. I don't even know what is normal anymore when it comes to RA. So many people with this disease suffer things I do not suffer with and vice versa. I wish in a way that more of us showed the same type of symptoms. I think it would make me better understand what is happening to my body. I guess I definitely learned a lesson....don't ever take hand written notes again. Plus, in the wise words of RUN DMC "it's like that and that's the way it is".

Look at this thumb! What am I to do?!



Here is an oldie but a sweet goodie!


Tuesday, April 3, 2012

My Submission for Show Us Your Hands Book

I sat there thinking about an intimate story about my afflicted RA hands for the book submission I was accepted into. I wanted to make a poignant point that life with a debilitating autoimmune disease does not have to be the end all be all type of sentence. I am rarely positive but I have tried being better at it for my fiance, since he lives on lollipop lane and all. I kid, I kid....well sort of kind of.

So I worked on my first draft of the submission today and e-mailed it off to my RA leader. She has been nice and encouraging. I usually have to submit papers to asshole professors. It's nice to submit something to someone warm and open.

I would like to share my submission that I have thus far about me and Ol'WW.

Here it goes....

"My hands were once the lonely hands, hands that were resolved on being alone for life. Sure my hands have lived a colorful life full of travel to many countries, hands that created a lot of art, and researched and typed many papers including theses for Masters programs, hands that taught and helped shape lives of low socio-economic students. However, my afflicted Rheumatoid Arthritis hands never felt comfortable with another pair of hands in their life. That is until I met my fiancé William who has Ankylosing Spondylitis. I finally found another pair of hands that fit mine perfectly in more ways than the literal sense. His hands understand the struggles with the internal and external pain that can come with inflammatory arthritis. He has been down the same road and continues to travel the same road as me and his hands offer my hands and heart comfort and understanding. I thank my hands and his everyday for writing numerous pen-pal letters when we first met on a website for inflammatory arthritis close to two years ago. We truly shared a lot of fears and dreams with one another through our letters and there were some days and moments in my life that his hand typed letters saved me. When we finally met, our hands connected and everything felt right and whole for the first time in our lives. My hands found their missing piece to the puzzle. We both felt like we were half a person with our various degrees of abilities and disabilities but when we finally came together we made a complete person who just had abilities, not disabilities. Things I was unable to do, he could do. Things he was unable to do, I could do. My hands in his hands feel beautiful now. I never saw the physical beauty in my hands before due to swelling, deformed joints, and nodules but his beautiful strong hands make mine beautiful. On November 22nd, 2012 his hands in mine on bended knee proposed to me and placed a beautiful engagement ring on my left hand. I now walk around often catching myself looking at the symbol of love, comfort, and understanding on my left ring finger. Now instead of trying to hide my hands or disguise them in any way, I proudly show my hands off to anyone and everyone and think to myself that my Rheumatoid Arthritis hands are gorgeous and loved by my fiancé who has Ankylosing Spondylitis. Nothing in this world can stop our connected hands now."


I hope it is what the editors are looking for. I thought it was lovely as did my fiance. I even got a "very good" and "excellent" from him. He usually responds with the dude answer, "pretty good"...what gives what that? Hahaha, men?!




Monday, April 2, 2012

Goodbye Yellow Brick Road...and Kneecap?

Another blow for me in the world of Rheumatoid Arthritis occurred today. For the last three years (always in late March or early April) I have had surgery. This is the first year in 4 years that I have not had a surgery screw up my birthday. Today? A discussion on surgery took place! Granted no surgeries are taking place around my bday this year but the thought of having one coming up is annoying to say the least. Today my knee doc mentioned a kneecap amputation to save me some time because I am on the young side to get a total knee replacement. My mouth dropped and thought, how can I stand without a kneecap? Apparently my life might improve in the pain department...I just don't know. I really never thought I would have to face these decisions at such a redonkulous age! So frustrating. Then I was thinking about all of those self-absorbed narcissistic ass wipes that have so many cosmetic surgeries just to look better. I have to have surgeries to try and function without a limp and feel better. I really became enraged with that thought. Plus, I am having the worst lung issues on the planet. I sound like a 3 pack a day smoker with this odd hacking. It actually hurts to breathe. I know it is not bronchitis so now I have to go to the doctor tomorrow hoping and praying I do not have RA lung. Many idiots out there who do not understand the difference between their foot and their ass do not realize that so many organs become involved with RA. I'm hoping it is just medicine related but I know I'm going in for a lung x-ray tomorrow. I guess nothing should surprise me tomorrow.

I came back to reality yesterday from my vacation in WV, and I came back to this shit? Plus, I started a new course for my Master's degree and this one is going to kick my ass. Shoot, I hope I can at least get a B. I never ever hope for a B because I am anal Annie and NEED (not want) the A. I lose my mind for anything less than a A, so this hope is a departure ahaha.

My fiance started school today too and I am patiently awaiting to hear from him in regards to his first day. I know he often checks my blog to see if I updated it. I hope his first day went well and I want him to know how proud I am of him. Not many loved ones share with one another how much they love them, respect them, and how proud they are of them. I am guilty too. He cracks me up, today he posted Pink Floyd's "Another Brick in the Wall". As many years of education I have under my belt, I can honestly say that this brick is still oddly shapes and never fits with the others.

Why am I so tired after a vacation? I need a vacation from my vacation!


I know I don't want to be another brick in the wall RA patient, but it seems like that is what I am becoming!


Goodbye Yellow Brick Road of hope!