Tuesday, October 30, 2012

Drawing Lines in The Sand











Whew, am I pissed. Does Sandy and her barometric pressure have something to do with this mood? Does pain have something to do with this mood? Or, is it selfish people that have something to do with this mood? See, here is a little backstory. I grew up with a very selfish man in my life, my dad. Don't get me wrong, I love the man to death but he has always been and will always continue to be selfish with his "I'll do what I want when I want and to hell with the rest of you." Now, that is a fine attitude to have as a single man with no dependents, like, oh say a wife and daughter. Play Judo even though you don;t have the knees for it? Sure! Why not? Go to sketchy foreign countries and hang out with shady locals? Sure! Why not? Go flying by yourself in a puddle jumper without being fully licensed? Sure! Why not? I get the whole you have to live your life attitude but why take the selfish route when you know you have loved ones who rely on you being on this planet. Not rely in the economic sense, but in the emotional sense. Especially knowing one loved member is emotionally fragile. I saw what that selfish "I'll do what I want" attitude did to my mom. It made her into an awful worry wart, an obsessive worrier. It's not fair. Now, she has the oddest neurosis I have ever seen.

I swore I wasn't go to be with a selfish person and I work everyday not to be a selfish person (it comes so easily for the only child in me) but I know I always keep my loved ones in mind when something dangerous comes into play. You know how Sandy hit with flooding and wind for a lot of states? Well, Sandy dumped a good amount of snow/blizzard material on the state of West Virginia. What did my fiance do today? Drove to school. What is he going to do tomorrow despite the Governer's strict and stern warning? Yep, drive to school. I am appalled at his school for even being open. They are going to get an earful from me tomorrow. Second, I gave an earful to my fiance but he held that same selfish attitude my Dad has, and it pissed the hell out of me. Same ol' I'll do what I want and to the hell with all of you all over again. Nope, not going to do it. I have NO room in my life for that for another 33 years. I'm drawing a line in the sand thanks to Sandy. I refuse to be living with someone let alone married to someone who did the same thing to me my whole life. All in the name of stupid school?! It's school! They will survive a day without your presence. See, my fiance has Ankylosing Spondylitis. His neck and back are completely fused. He can't turn his neck or back. His neck does not move, therefore, if he were to get in an accident (God forbid) no rescue crew could move his neck or intubate him. He will be further fucked up if not dead. Nice, huh? He was convinced he couldn't drive for oh twelve years or so and then I had to come into his life and encourage his driving by saying I see midgets with no hands drive, I think you could drive with the right equipment. Well, am I ever fucking sorry I encouraged him. Now he thinks he doesn't have AS and he can drive just fine on the craziest smallest country roads with fallen trees, ice, and snow. What is the moral to this story? I'll never encourage him to do anything ever again.

I'm hurt in all honesty. Hurt he didn't even consider my feelings, thoughts, or concerns about his own safety. Didn't consider the fact that I emotionally rely on him and thanks to him he saved my life during one real awful year. I had and almost succeeded in offing myself but I stopped despite the awful non-stop pain and constant medical let down because of my consideration for my parents and the prospect of being loved by someone I loved too. Now, I don't even get the same consideration. Woah, major red flag.

It hasn't been a good fiance communication week. Last night I mentioned how I have been working hard on wedding planning (an academic who is not bridal in the least trying to plan a wedding is funny in itself), and how I was working on our wedding website all day. What did he say in all honesty? "We have a wedding website?" That was a knife to the heart. Then I also tell him I have a meeting with a photographer today at 11. He texts me 10 times during my awkward meeting with the photographer. I call him afterwards and said I was in the meeting. Guess what? He forgot about that too. What the hell? I know dudes could give two shits less about weddings but try and pretend to care and follow along. After tomorrow, who knows if he'll be alive to even attend the wedding. I will have to find a new groom with the initials of WS because I just ordered a shit load of monogramed shit for our wedding.

He won't see why I am making a "big deal" about this. I bet you 10 bucks, 10 bucks to any reader who reads this and responds. I promise I'll send the dough. I know I am not hormonal about this because I don't have an ovarian reserve or a thyroid. I am on hormone pills and anti-depressants and mood stabilizers. I haven't missed a dose so I know I am medically induced sane right now.

His new anthem should be I am a rock, I am an island.





Saturday, October 27, 2012

Turns Out I have Retroactive Jealousy Syndrome

I do this to myself but I think my fiance helps with my neurosis, which isn't hard to do for a head case like me. See, I feel both of us should be open with our past experiences prior to our relationship. Yet, my fiance feels that what happened in the past needs to stay in the past and that it has no bearing on our current relationship. An impasse.

Since he has this staunch viewpoint and will not talk to me about something I find important, I get annoyed and then I turn obsessive thinking of his women of the past and then I start painting more wild and colorful stories that probably don't even exist. However, I blame my fiance for doing this to my brain and psyche. See, what it simply boils down to is the fact that I have an inferiority complex about sexual relationships. I feel that my disease(s) has taken a lot away from me and I constantly wonder if I simply measure up to his past consequences. I don't want him to feel trapped with me if he feels there is better out there. Chronic illness and mental illness combined can really fuck with your mind and psyche.

Me being me Googled the situation I was in and there is an actual forum for people like myself who suffer with retroactive jealousy concerning a partner's past. Who knew? I guess there is a forum for almost anything and everything. I don't want to possess retroactive jealousy but I feel I will continue with this until I get the details I want. I have always been a sleuth, detective, spy, and snoop but I feel if I just knew the truth it would lay things to rest. However, my fiance doesn't see it the same way. He sees me just bringing it up over and over. I am guilty of that but only for the simple reason that he won't share anything about his past with me. I do it out of teasing and out of spite. I don't feel I should just have to go with his tight lipped way. I feel there should be a compromise in this matter. I am giving him the rest of my life, I feel I at least deserve to know what his life was like before me. Others on various sites disagreed with my thought process. I just think they are too chicken shit to fight for their right of knowledge. I am an Aries through in through. I will butt heads until it leaves me bloodied and alone. It has always been like that.

I hate impasses and I hate when I feel a compromise should be in play, and there is no compromise. Do other people feel the way I feel about this subject? Or is this the time to tell me that I am overreacting and that I should just get over my retroactive jealousy syndrome? I try but it is hard for an obsessive thinker to do. Like I said in another post, Cognitive Behavior training did not work for me. It did not break me out of my neurotic and obsessive thinking pattern of all type of things.

I have suffered what I would consider brain fog all day. I don't know if RA causes brain fog or Lupus causes brain fog, but I am under a thick blanket of that shit and it is hard to see the forest through the trees on days like this. Plus, I think depression is starting to settle back in despite my best effort to shoo it away. Can I blame that on brain fog too? I know these last few weeks I have had blow after blow.

1st- Being told I had no chance in hell to get get pregnant, carry a full term baby, and still have my life in tact.

2nd- Ist round of Rituxan (kicked my ass)

3rd-Getting a letter and a phone call from the fertility specialist adding more salt to my wounds by stating I have no ovarian reserve to even get pregnant (despite them telling me I couldn't). Now, this was just cruel.

4th-2nd round of Rituxan that kicked my ass, lead to a blood clot and a vein infection.

5th-Seeing my fiance yet really not being able to be around him like I wanted to. Then having to deal with the high of anticipation of seeing him and being with him, then having to deal with the unbelievable low of not being with him again. It really hurts.

6th-Going to my foot doctor to be told that both my big left toe and left subtalar ankle joint have went down hill so quickly since last February that I need surgery for both....and soon.

Blow after blow after blow. I sucked and still feel that I continue to suck at resiliency but I guess this is my lesson in life I have to learn, to be resilient. I am fighting tooth an nail and all I am doing is wasting the little bit of energy I have to concentrate on mundane things like bills and school.

I hope this retroactive jealousy goes away. Even when I am occupied with school work and doctor's appointments, I am such a thinker that I can think about 5 things at once, and one of those things that keep popping back up is retroactive jealousy. I'm a weirdo, I know. However, I know I am not alone in my thoughts of insecurity. It's just others won't openly admit it in a public forum. At least I have the balls.

Thursday, October 25, 2012

One of those, "I'm having an ugly day because of chronic illness"

I have days where I look at my failing body, swollen sausage fingers and toes, and a prednisone face and body; well I just can't help but feel physically ugly. Today is one of those days. So, I am going to put up songs of encouragement for all of us who are suffering various body dysmorphic disorders stemming from our chronic diseases.






I hope these help you as they have helped me today. We are all beautiful despite what our diseases and psyches are trying to do to us on a daily basis.

Wednesday, October 24, 2012

RUPUS? Seriously?


I have not written in awhile. My 2nd round of Rituxan gave me some unexpected complications. I was diagnosed with a vein infection and a blood clot. The pain was so so excruciating. I compare it to a kidney stone I had in 05. I suffered 3 weeks with that puppy because I was such a wussy to have the surgery needed to correct it.

So a week and a half ago I had an emergency doppler study done at the hospital and was put on loads and loads of heavy duty antibiotics. I was fearful that I would not make my Father/Daughter trip to West Virginia to stay with my fiance and his family. Luckily, someone finally decided I needed a break and eased the pain, and we made it up there. We and I really mean me did manly things out of my realm of comfort. I shot a gun for the 1st time. I was scared for weeks before. Guns scare the hell out of me. I didn't think my RA inflicted hands could manage holding a gun and pulling a trigger. Turns out, I am an EXCELLENT marksman. The four shots I shot were all on target. 3 were near dead on bulls eye shots. Here is my proof.



We all tried fishing again. Why do I always get skunked trout fishing? I did catch something though! I called it a rock lobster because I seriously heart the B-52's.


I put both the worm back and the rock lobster.

We fed animals on the farm and took a ride through the mountains to see fall colors and the falls where I became engaged last year.









Then, back to reality of school work and doctor's appointments.

Today's Rheumatologist 3 month check-up was pretty priceless. My doctor knew I was seen at Duke Rheumatology. She was happy to have another pair of eyes on my case. I told her that I tested positive for a lot of the Lupus tests. I then asked if I could in fact both have RA and Lupus. She knows what type of patient I am and she started to giggle before conducting her doctor tone. She said I could have what is known as "Rupus" a Rheumatoid Arthritis and Lupus combo. I felt like Hollywood just combined names like they do. For example: Kim Kardashian and Kanye West are known as KIMYE. I can be known as RUPUS. I laughed so hard I about fell out the chair. Seriously?! Could my life get any more comical?

I am utterly flabbergasted by this new development. No real different meds can help but my doctor said we can find out which disease is preventing the worst of the symptoms and treat that one aggressively. I walked out of that office today shaking my head. I'm still shaking my head. Rupus? Seriously?

I once knew a dog named Rufus. I know Roofies exist. But Rupus? What the hell do you do with that info? It's embarrassing. Simply embarrassing. It just sounds so made up and dumb.


Monday, October 8, 2012

The Waiting Room After the Waiting Game


Well round 2 of chemo not only kicked my ass, it kicked the shit out of my vein. When the 8 hour IV catheter was placed into the sweet spot, the nurse noted my vein rolled. She got it back and functioning, a revival of the vein. The chemo stings like a mofo and I didn't verbalize my pain because I hate looking like a sissy. For some reason, every person in that infusion room is one giant sissy and I refuse to be part of the sissified nation. I took my lickings like a man.

Fast forward to Friday, some discomfort in my IV arm, minimal range of motion, hot red streaks up my arm, and pain.

Fast forward to Saturday, everything listed above minus the red streaks.

Fast forward to Sunday morning, I'm crying in my bed like a big sissy from the horrendous pain. Oh my goodness, the freaking pain! I was starting to flip out and was asked if I wanted to go to the ER. No thanks, I owe too much to them already. I decided to tough it out and call my Rheumy first thing Monday morning. I called, explained my symptoms, was driven to the office. The nurses looked at my arm and determined I had some chemo not go into my vein, instead, it pooled in my soft tissue in and around the insertion site.

I get a shot in the ass for my arm, makes sense right? Oh celestrone how I loathe thee but you have made some improvement in my arm. I have to ice and compress 10 minutes for every hour and elevate a shit load. At least I won't lose my arm.

Waiting room news? The place was packed and today was the first chilly day of fall. The masses and their pitchforks demanded heat. The heat must have been turned on before I arrived in the new building, and guess what? It smelled like heat was just turned on for the 1st time. The shit load of complaints in that waiting room drove me nuts. I love the office staff and nurses at my Rheumy's office, no wonder they want to stab the shit out of people there. I asked to sit in the hallway so I wouldn't get in trouble. What the hell gives with these patients? I understand we are miserable, diseased, and in pain but there is no need to be an ass about it.

Reminds me of Fugazi's Waiting Room. These people could start a legit mosh pit with their anger.


Thursday, October 4, 2012

Chronic Illness is a Bully

I'm sorry for the lack of posts. These two week, two rounds of Rituxan chemo have kicked me hard. During my second eight hour round today I declared that chronic illness is a bully. It's National Anti-Bullying Awareness month and I have a bully living inside of me, and that bully is Rheumatoid Arthritis (Rita). Think about it, our pain and disabilities bully us into not being the ultimate best abled selves, they bully our looks with packed on steroid pounds, swollen disfigured sausage fingers, cankles that kill and all of these hurdles of bullying hurt our self-esteem. There was a time I wanted to end it all. The bully of chronic illness almost took me down like a lot of kids that are bullied by others. I had a part of me bullying my own self. That goes with the chronic illness territory. In no way am I Mary Sunshine everyday but I have been trying to fight back against my bully Rita. I wanted to take real raw photos of me looking my ugliest and sickiest. I want this as a reminder of what bullying can do to me and how the pain shows on the outside.

I want to kill chronic illness bullying with visuals. Visuals at my tender worst.