Tuesday, March 31, 2009
Then today, I woke up in a lot of pain .... and so so so tired. Fatigue. How can I describe fatigue to you .... it's more than being tired. I feel like a zombie .... it is hard to concentrate, time goes by quicker than usual because it take longer to do everything. I feel like I am in a time warp .... spacey .... I am already a little flippy dippy so fatigue takes me to a weird place. Then, comes the guilt .... I am hard on myself, and I am working on that. I feel angry that I can't do more, I don't have the energy to hang up my clothes and it makes me feel lazy. Then, I get pissed off. It's this vicious cycle. So, I went through all of that today. I woke up at 7:15, and I felt horrible, so I postponed an 8:30 appointment until after my 10:15 class. It was hard to walk all day ..... hard to concentrate. Days like these are not the norm thankfully, this has been one of my yuckier days ....
And that 8:30 appointment was to sign the separation agreement. I got it done at 1 pm instead. Maybe my extreme pain and fatigue was from the stress of all of that ... the anticipation. Well, it's done, so hopefully I will feel better tomorrow.
Glad to be home in my pajamas!
Monday, March 30, 2009
I would like to start off with Holly my young pharmacist. I think she has just graduated from pharmacy school, but she is on it. How? Well the main thing that I notice is that she remembers me. That's big. I used to go to a pharmacy in Holly Springs where my prescriptions were often wrong, and I dealt with a different pharmacist (it seemed like) every time. It sucked.
If Holly doesn't have what I need she always calls me and works something out either with another pharmacy or she has the medication shipped. She knows that the humira pen hurts me and always gives my the humira syringe. She asks me what time of day I take my prescriptions so she can have everything ready for me.
You would think that this type of behavior is normal, but it isn't --she is the exception .... she is very young, smart, enthusiastic, and caring. I hope that she doesn't get burned out. I picked up some prescriptions yesterday and asked for her because I wanted to compliment her, but she wasn't there. the pharmacy tech gave me a website where I could go online and give feedback about the store, so I have to go and do that ASAP.
Laurie .... thank you Laurie for helping me explore natural healing ..... all the way from Baltimore! Liz thanks for the great deal on quality fish oil ........ And all of the other suggestions you have offered me since we met. I really appreciate your concern and expertise.
Duke Clinic ..... complained about the clinic a lot in the last post. But, If you read the post closely .... it's really a complaint about the bureaucracy of being sick. Overall, I have had a good experience at the clinic. Why? It's not the reception desk, they always seem really stressed out. Not sure why? The nurses are generally really nice and low key yet are pressed for time too. The blood taker people seem pretty stressed out too ..... I think that all of the employees are always really pressed for time. It is weird ... because the patients are in this alert waiting mode ... and all of the employees are very keyed up and sometimes they forget to even make eye contact with you. I am a patient there ... my identity changes as I walk through the doors.
Cristen Harris the student, daughter, sister, friend, .... dog mom .... Steeler Nation member becomes secondary. I now have a patient number and my diagnosis becomes the forefront of my identity. I am identified by my number and what doctor I see, the severity of my disease, how many medications that I take .... what blood tests I need, do I need another bone density scan? MRI? X rays? How is my liver doing? Weigh in? How tall are you? (Like it has changed from 2 months ago.) On the days that I go to the clinic, I am fine with my RA being the main aspect of my identity, I just hate it when it follows me everywhere .....
So, What's so great about the clinic anyway? My Doctor. He makes eye contact, cracks jokes, listens to me, is empathetic, caring, wicked smart (he better be), remembers me, asks how things are going outside the realms of RA, returns phone calls, emails, quickly gets back bureaucratic paperwork for NCSU etc ..... communicates quickly with my pharmacy, which is really important when prescriptions expire. He can fit me in right away if something awful happens like partially tearing my achilles tendon while doing the polka. I actually don't know how he does all that he does. Because there are so many patients just like me. Thanks Doc. (Never call him that in real life ... but I guess it is ok in cyberspace.)
Friday, March 27, 2009
Anyway, so, where have I been? I have been in a Mexicoma. Love that word. I was watching Sex in the City the Movie again, and I related to Carrie more than I ever have before .... normally, I am more of a Charlotte type. Carrie gets dumped at the alter from her beau of 10 years and then her girlfriends go on her honeymoon with her. She sleeps for the first few days. When she finally gets out of bed she tells her friends that she has to snap out of this "Mexicoma". That's where I have been lately in the bowels of my own personal Mexicoma.
Sadly, I am not in the movie, so I am not at a five star resort in Mexico with a butler waiting on me and my best friends. But, if you want to be my generous benefactor and send me to a five star resort to get over my broken heart ..... GIVE ME A HOLLA.
My broken heart wasn't the only thing that put me in this mood .... and I didn't sleep the whole time, just the regular eight hours. No one has yelled, "cut" either. I have a 25 page paper due in a month. I had to read Thomas Hobbes Leviathan and I had to write a mock case brief on Mapp v. Ohio. So, I didn't totally disappear into my pillows and duvet. Though, that would have been great.
The Mexicoma started after my mini-meltdown at the Duke Clinic last Thursday. I was supposed to start some new medicine called Orencia. I have to get it at the transfusion clinic and it's thousands of dollars a dose. So, for a week, I was trying to figure out if it was going to cost me anything. Because, I had learned the hard way not to assume that your insurance will gladly pick up all of these new fangled disgustingly expensive drugs because that is simply not the case. BCBSNC will do everything they can to leave you with the bill. Maybe they should spend less money on those fancy TV commercials. Or maybe the pharmaceutical companies should get over themselves and not charge so much for drugs that sick people desperately need. Or, maybe the United States should stop bailing out companies like AIG and start bailing out sick people. Or maybe, we should become a communist nation and I can wait in line for 12 hours to see my doctor. (For some reason this is the impression that I had as a child about the Soviet Union ... you have to wait in line for everything.) Or, maybe the government should put sick people on an island and forget about them. Because I feel like that's what's really been going on anyway. Then, they could erase everyones' memories of the banished sick people. I am ranting I guess. But one of my main themes is the health care system in the US is a flippen mess.
Oh and by the way for those of you who are free market advocates, All of the new medication that I have been on for my RA has been about the same price. What is up with that? Doesn't sound very free market to me. Where is Adam Smith when you need him? Are these drugs prices being manipulated. If so, by who? Shouldn't the price vary? So, drugs prices are not following a capitalist system, nor are they socialist. Not sure what is going on .... Pricing is definitely being manipulated though for the mutual benefit of the sellers not the consumer. Kind of like when you go to the farmers market and all of the peaches are about the same price? These wily farmers have gotten together so they mutually make a nice profit. Instead of having to low ball their prices in order to compete with the farmer at the next booth. What is the economic term for this? It's called collusion and it's illegal.
Maybe I should look at the bright side .... at least I have health insurance .... at least I have a good doctor .... friends and family who care ..... Yes, this is all true ... and the bright side keeps me going every day. But, sometimes I get so overwhelmed and frustrated. I have never seen the movie Sicko, because I feel like I am living Sicko ..... I have no desire to see something that complains about something that I live ... I want change. I am sick of commiseration.
Apparently, One week of trying to figure out this whole mess was not enough. I showed up at the Clinic and the transfusion appointment lady had cancelled my appointment without telling me. My insurance was not going to cover my transfusions until I hit my $2,500.00 deductible. I could rant and call this appointment woman many nasty names, but I already have out loud .... wouldn't want to be redundant. And, ultimately, she is in over her head. She is not the sharpest and this billing, insurance bureaucratic bullshit is a mess (remember my mess theme?) It's a reflection on the Duke Clinic that they do not pay enough (or something) to get competent people in complicated positions. Or, maybe it shouldn't be so flippen complicated.
So, where am I now with this most recent mess? I am waiting to be approved to get Orencia for free for eight transfusions from a program from the company that makes Orencia. So, that's a bright side isn't it? I will be able to get this medicine eventually ....... So, I am waiting for faxes to go through paperwork .... signatures ........ approvals ..... everyone has to make sure that I am sick enough and poor enough .... and they have to make sure that my insurance sucks ... oh wait everyone insurance is sucking these days ...... Bureaucracy at its best. Good times! Have I mentioned that I can barely walk by 7pm as I wait for everyone to make sure that I am really pathetic enough? It's a shameful mess.
Thursday, March 19, 2009
Apparently, I have been doing a lot of this stinkin thinkin because stories are just pouring out of me about my life with RA. The past couple of days I have joined various online support groups for people who have RA. They are very helpful, but I am struck by something that they do not provide. It's great to commiserate and support one another, and chat about how people just don't understand what RA sufferers go through. One group is great at circulating reputable articles about medical news etc. However, how is all this misunderstanding going to change if all sick people do is complain to each other?
As I write and share, I have realized how much society has placed me in the "sick girl box" It makes me very sad to think about. Because, I am so much more than that. I am sure that there is lots of advocacy going on out there. Seems like I am at a point in my life where I want to join the advocates. Blogging has been a good beginning. I want to go out and do some "advocatin" (The G is omitted for dramatic effect). Wish me luck.
In closing, an excellent song by Lauren Hill,
Wednesday, March 18, 2009
I guess that people really can't help themselves sometimes, and more people have kept their mouths shut when they see the meds that I am on than have blabbed, but there have been a few that just can't keep their mouths' shut. And, it has really aggravated me each time. I am talking about health care professionals. I've had a doctor, an nurse practitioner and a nurse who had a PhD ... whatever that is called say "you're on a lot of medication." What am I supposed to say to that?
It's kind of embarrassing, like I want to be on lots of meds .... I enjoy giving myself injections and swallowing oodles of pills .... great fun! It's the new trend. Well, I guess in a way it is a new trend. I think the US swallows more pills than any other country in the world. So, maybe that's why I get embarrassed --I feel like these people are looking at me like I am part of that epidemic .... that pill popping, primary care provider swapping, druggie. Is this another sick person prejudice that I fear people catergorize me as? I don't know what these health care professionals motivations were, but I know that it upset me, so .... I decided to share my embarrassment.
Yesterday, I filled my sister in on the medication that I am taking right now, and I realized it's a pretty intense list .... I guess I have gotten used to it, but if you step back and think about it I do/have taken a lot of medication.
So here's my med list right now:
- Methotrexate 25mg injection once a week.
- Starting Orencia this Friday .... infusion at Duke.
- Fosamax ..... once a week pill.
- Over-the-counter advil daily
Not too many right now, right?
I am at a transition period right now, I was on humira, but it stoppped working, and I was taking leflunomide but it messed with my liver.
I have been on:
Enbrel ... stopped working .... diclofenac .... messed with my liver ...... placuenil ..... GI issues big time ...... celebrex .... didn't work ...... Prednisone ..... kicked my habit last October Hell Ya! It made me feel better, but it made me gain weight, my cheek bones disappeared, and it sucks the calcium out of your bones (just to name a few drawbacks) ..... I was on another NSAID, but I can't remember the name of it .... it was pulled off the market for causing heart problems. That's all that I can remember right now.
I have managed to avoid pain pills --the ones that make you loopy, because I don't want to be loopy. This is a personal choice ... I am not knocking people who do, I have friends and family that have to and I don't raise my eyebrows and question their judgement. It's their personal choice --if they were loopy all of the time, I would have a conversation with them.
Another reason that I have avoided them involves my bartending years. Customers would abuse prescription drugs and drink and act like FOOLS. I don't want to be that girl .... No Way. So, I have just stayed away, because I think it would be easy for me to fall into 24 hour loopiness.
So, I guess .... well I know that I am sensitive about my prescriptions. I desperately want to kick my RA's ass and throw it out of my life .... then all of these damn medications could go far far away. I haven't even touched upon how much money that I have spent on medication .... that will be for another day.
Tuesday, March 17, 2009
Anyway, part of being a member of Steeler Nation is you should know how to do the polka. And, if you hear a polka being played, you will find a partner and begin doing the polka. The polka for those of you that don't know is a bouncy high energy dance from eastern Europe. There are a lot of people in Pennsylvania who can trace their heritage to eastern Europe, so the polka is pretty popular at weddings and strangely enough in PE class. Did anyone other than me do the polka in PE?
On Super Bowl Sunday, I went to Sammy's with friends and my cousin Michele (who can do the polka quite well). Sammy's is the official Steeler bar of Raleigh where the official Steeler triangle area fan club meets, so I was there. They were playing the Pennsylvania Polka when we walked in, but I wasn't really in my "Steeler Nation crazy fan mode yet", so I just smiled when I heard it instead of demanding that my cousin dance with me.
Well, after the Steelers won, the DJ played the Pennsylvania Polka during a commercial break. Let me pause here for a moment to fill you in on how I was feeling that day .... crappy ... my RA was really bothering me. I was tired and my ankles hurt .... badly. But, it was the Super Bowl, I wasn't going to sit at home alone. No Way! Ok, so back to my story. I was beyond excited, ... running on adrenaline ..... and I grabbed my cousin's hand to do the polka .... we had just won the Super Bowl!!!!!! We have more rings than any other team! I want to have Troy Polamalu's love child ..... I was in crazy fan mode!
She politely declined since she had helped a friend move the day before and her calf muscle was sore, but I wasn't going to take no for an answer. I pulled her off of her chair and we started doing the polka. I was thrilled ... we were both giggling. Other people started dancing too. Ahhhhhh ...... OUCH something just bit my achilles tendon. Shelly, "something just happened to my ankle." I danced for a little bit more, but then I sat down to investigate. &^%$ ... I was in serious pain. What had just happened?
Turns out, I had partially torn my achilles tendon. Damn! It was compromised from a few years of arthritis in my left ankle, and the polka was the last ..... bouncy dance that I was going to do for awhile.
Was it worth it? Yes, I am not going to stay home and feel sorry for myself and be alone on a special occasion. And I am the type of person who is going to do the polka even if I am having a "yucky pain day". It reminds me of my Grandma Karalfa who taught me how to polka, she's passed since. There I go with being sentimental. Was it wise of me to dance? I am not sure. It is a hard balance. Where should I draw the line? I try everyday to decide what I can and can't do ..... But, sometimes my personality ... my youth ..... gets in the way of being prudent. It's tough to be a bit of a sentimental spaz with gimpy joints.
Sunday, March 15, 2009
There was a time in my life where I was the party. I was wound up, the promoter and buyer of shots. I am smiling as I think of all the crazy times that I have had with my friends .... family. "So, who wants to do a round of red deaths?" Hmmmmmmm ........ I love vodka the best and just about anything that you can make with vodka .... minus grapefruit juice. Oh, and I love hoppy beer ... the hoppier the better. I love red wine .... I love Disaranno Amaretto .... I think that you get the point. Social drinking was a pretty fun past time for me .... staying up late ...... dancing ..... listening to live music. Now, I try to avoid drinking .... my liver is having a hard enough time with my meds.
One time ....
There are so many to choose from ..... how about the time that me and a friend were kicked out of a bar for being so drunk we kept falling down on the dance floor ... in the dance floor sludge. We had to stand in the pouring rain until we found the people that we came with .... this was before cell phones, so kinda tricky. That was so cool and funny! I don't mean to sound like a prude, cause that would be dishonest ..... I crack up all the time thinking of drinking stories and most of the time when my family members or friends get a buzz .... they crack me up.
Except for one night when I was hanging out with friends and one of them said to me, "You used to be so much fun."
"Oh really? THANKS!!! Guess what drunkie? I can still hang out with my friends, and listen to live music and have fun and entertain and be entertained, and dance, and go to shows and flirt ..... I just don't drink anymore. That doesn't make me less fun. Sorry, I am not sloppy and have bad beer breath. You are really so much fun that way!"
And to be honest, I am still pretty wound up, cracking jokes, talking smack .... I just don't have a hangover the next day, and I don't have to worry about the drive home. In closing A video from Cake:
Saturday, March 14, 2009
These are the foods that I have craved:
- Chicken Broth (strange)
- Vietnamese Soup, I think that it is called fo or fa?
- Potato Chips
- Red Wine
- Salad Dressing with Vinegar in it.
Food tastes strange without salt in it. I think that I have a salt problem. All of the above food is pretty salty except for the red wine.
So last night, I had a dream that I was in Florida visiting my aunt and I made everyone meatballs and lasagna. Yum! I began to eat meatballs while sitting next to my cousin. Then, I woke up and had some unsalted peanuts, an orange, and apple juice for breakfast. YUM! Aren't ya' jealous?
If I want to explain my current eating plan to people it takes quite awhile. My Mom thinks that I am nuts and when we were at the funeral I think that she was just waiting for me to mess up. And I did, I was in a small one traffic light town in the Appalachian mountains. I tried my best, but there were few options for me and I didn't have time to go shopping and then prepare myself food that no one else would eat. I continued to eat a lot of fruit, but I have to have protein or I fade .... I can't think straight. So, I had eggs, rigatoni, and some ham. So, when I got back, I started over, oh well. Oh ya, I had chips and salsa and cheese puffs too. OOPS!
I am looking at this month of eating as a month of eating medicine. I already give myself shots and swallow pills everyday, so I look at my eating habits as an extension of my medicine intake. I already deal with pain everyday ..... fatigue ...... and limping sometimes slightly sometimes noticeably. So, as I explained it to my little brother, I am on the "hunter gatherer" diet right now, minus the hunting. Maybe I will start a new trend?
If I have been sick since 04, then why haven't I tried something like this before? Well, it's complicated. I did try and it was a bust. I went to a holistic doctor (she is an MD) in North Raleigh shortly after I was diagnosed and it went horribly. Now, I know that I should have kept trying, but I gave up for awhile .... intimidated ....
She was completely overwhelming and elitist. this is what she suggested that I HAD to do or else.
- Buy all of these expensive supplements from her pharmacy.
- Get vitamin C infusions from her. (I think weekly).
- Completely change my plumbing in my house so I drink, bathe, and cook with purified ....water ..... several thousand dollars .....
- She wanted to study my poop! LOL! I felt like I was at a vet. I am sure that there are valid reasons to do this, but her approach was horrible. She gave me a hard time about eating sushi and working and living with animals. She feared that I was full of parasites. (Get a grip, humans have evolved next to animals since "the beginning".) Somehow we haven't all died from parasites.
- She said that I had fungus on my tongue .... EGHHHHH ....
- I had horrible ridges in my nails .... don't most people unless ya' buff?
- She wanted me to go on a diet I don't remember the particulars, but I do remember her telling me that I had "issues with dairy". OK .... What in the hell does that mean?
I am not saying that she didn't bring up good points, I am sure that she did, but she was very rude and offensive. During the appointment, she overwhelmed me by demanding that I spend thousands of dollars, made me feel like she questioned my hygiene, questioned my hobbies and job, and was very dismissive. And, arguably, she really made me feel like she wanted my MONEY .... a lot of it.
So, I left crying and completely feeling yucky and overwhelmed. Fungus on my tongue? Parasites? Issues with dairy? Weekly infusions? Screw you! I didn't go back, I threw away the apparatus that I was supposed to put my poop in and had the impression that a holistic approach to healing would cost thousands of dollars, and I would be talked down to the whole time by this elitist doctor. No thanks.
I decided upon a rule about health care professionals after my experience with this MD, if they make you cry because of their insensitivity, DO NOT GO BACK. I think that she was trying to scare me and that's really ridiculous. She didn't get anymore of my money. Unfortunately, I had this notion that I couldn't afford a holistic approach.
I have moved on from that bad experience and I am trying out rational approaches to helping my body smash this RA into remission. What advice do I have?
- Like I said, stay away from people who make you cry, the situation can make you cry but not the person's approach or motives.
- Use your common sense and don't do anything too wacky .... like eat apples for six months or something ... you would probably die.
- Internet advice .... I think that we all know the answer to that. Bad idea ... unless it's reputable. Don't get medical advice from a website that is trying to sell you something.
- Just because someone went to school for a long time and have a lot of letters after their name, doesn't meant that you have to do everthing that they say. BE WARY!
Be wary and open minded at the same time ... tough balance.....
- Don't let your prejudices get in the way of something that can help you. My bad experience led me to have fear and prejudice about natural approaches, I thought that I couldn't afford it.
- Know what you are swallowing. I have read that some websites that offer healing herbs are often selling you steroids. BAD IDEA.
Like I have said before, I am not sure how I will feel after my "gatherer diet" is over. But, at least I am trying new things that are not going to hurt in any way .......
Friday, March 13, 2009
I am afraid of health insurance. Socialized medicine scares me. Privatized health care scares me .... HMO's Scary ..... deductibles ..... scary .... new and expensive drugs .... scary yet helpful.
The whole thing is scary. I feel like I am walking on an old attic floor and I might fall through at any moment. I have these scenarios that runs through my head .... like,
"miss that medicine that allows you to walk, yeah, it's been recalled, it causes stomach cancer and you can't have it anymore. Maybe you should get a scooter?"
"We don't cover that medicine anymore, so you'll have to pay the entire $1,200 every month, oh you can't afford that? Sorry!" Spend all of your savings, maybe spend all of your parents savings too? Why don't y'a just go into credit card debt .... everybody's doing it. There's a lot of equity in that house of yours .... "
"So, now that the government has taken over, you can't see your rheumatologist that you have a five year relationship with .... sorry you have to travel to Charlotte and wait in a line for 4 hours to see a rheumatologist, and you'll see a different on every time that you go."
"Before you see your doctor, you have to fill out 20 pages of paperwork that will be reviewed by the feds who will make sure that you are properly diagnosed, and that process will probably take six months. During that time you will have to pay for your own medicine and health care, but that will be paid back if the feds decide that you are sick enough --that process may take up to two years."
Bureaucracies always have to make sure that you are sick enough ..... poor enough ..... And most importantly, that your condition is permanent .... "I don't know!!!!!!" But, if I want help then I have to mark yes. "I am very pathetic .... and I am poor poor poor, and I am pathetic and sick ... there are you happy now?" It is all very degrading.
I am not impressed with the current privatized health care system (mainly expensive prescription drugs) and I am very wary of the federal government acting like (Obama, who I normally agree with) the federal government's magic wand will fix all the ills of the "health care crisis" that rarely gets reported on anymore since the economy is such a mess.
Maybe I will follow up in this post with another one with stats about the financial problems that people face who have chronic illnesses. Because, it's a mess and I am worried that it will be a mess for many years to come.
It kind of reminds me of how people could not really wrap their minds around the industrial revolution .... it was a wonderful advancement for human civilization, but then it caused all of these problems too .... like pollution ... "robber barons" (love that phrase), and crowding diseases. But it was such a beautiful thing too .... My great great grandparents may not have moved from their peasant status in Sicily and Slovakia to the "land of plenty" ... the United States and moved up into the pleasantries of the middle class.
The technological advancements of medicine have contributed to a population explosion, decreased infant mortality rates and increased life expectancy .... just to name a few.
However, everything is so damn expensive and people are still drinking nasty water in some parts of the world and dying from something as simple as diarrhea. Society has not been able to wrap it's mind around medical advancements, as a result sick people are suffereing ....
If only I had some of that robber baron money, damn.
If you get sick, I sure hope that you have a lot in your savings account.
It's just NUTS!
Thursday, March 12, 2009
At first, thinking of her made me feel like a loser (for just two days). She never seemed afraid and always spoke her mind. What am I? A 32-year-old woman who has never had kids when she had 4, still in school trying to get a degree, when she worked HARD all of her life. Why can't I just get it together!?!?!?!?!
Then, on Monday morning I went to Pennsylvania with my brother and was surrounded by people who loved her and reminded me of her other attributes. She LOVED her grandchildren and she kept a prayer in her wallet that asked for God's strength during hardship. So, she wasn't perfect, she had to ask for help too. Then, I began to look at her strength in a different light, maybe I can lean on her strength now ... the memory of her strength while I finish my degree in the midst of a separation. No one is perfect including me so I need to stop beating myself up and stop trying to attain perfection .... or even something that resembles perfection .... I can only be me ... and I am flawed.
During the funeral, I realized that the perfect place to open up about your problems is at a funeral home ..... everyone is kind of in a nostalgic thoughtful melancholy mood. When your 87-year-old grandfather is crying why even attempt stoicism? If he's letting go, why can't I? One of the first questions I was asked as I walked into the building was, "So, are you married?" "No, actually I am separated." I was off to an excellent start.
Later, an uncle that I hadn't seen in several years had heard about my separation and asked me about it and I let go and filled him in on why I was separated. An Aunt asked me about my arthritis .... blah blah blah .... filled her in on all of the details ..... and it turned out that she has a form of arthritis too. Then, a family friend and I talked about my RA and her deceased husband's analysing spondilytis, her brother-in-law's psoriasis and her sister's RA. I talked to a distant cousin about his wife's cancer. I decided to open up to people on the way up to Pennsylvania and I definitely was achieving my goal. And, it was OK. No one cried, or took off, or told me to go lie down, or tried to play matchmaker. And my family understood me better, I could communicate more freely about everything because I wasn't hiding a big part of my identity.
Just so you know, I don't plan on doing this all of the time everywhere ... that would be weird. But, the funeral home was a great place to practice and my family was more than willing to listen. So, now I know that I can be honest with myself and others about my life.
Another Aunt brought up some good points about being stoic.
- Women try to take care of everyone.
- Women try to be strong for everyone.
So, I am working on letting go ...
Thanks Grandma for allowing me to lean on you as I let go .....
January 9, 1926 - March 6, 2009
Monday, March 9, 2009
Sunday, March 8, 2009
As I have mentioned before, I don't like to complain or whine about my RA issues, but being stoic can really be stupid sometimes. Like when I am talking to my doctor and he asks me how I am and I say, "fine." Come on, I am at the Duke Clinic seeing a specialty doctor .... things are obviously not fine. Spill it! Or, when I am walking six blocks to go see the Ravens play the Steelers ... at a quick pace .... will I be ok? No, but I said that I would be fine to my Dad, Sister, and Husband. Yeah, I had a flare for the rest of the week, but the Steelers won, so it was kind of worth it? Although, if I would have been honest with myself and my family, I am sure there would have been accessible parking somewhere closer. Oh and how about the time, I thought that I could host a big dinner on New Years Day for my friends. I didn't let anyone make anything even though I was totally flaring. Stupid. Once again, I was sick for the rest of the week.
And here is my stupidest stoic moment to date, I side swiped the drive thru bank machine because my right shoulder hurt so bad, I could barely change gears? Why was I not in bed, if I was in that much pain? And what the hell was I doing driving a five speed? I have never told anyone (other than my husband, I think) why I have a dent in my car, and now I am telling the entire world wide web ..... Hi .... Pretty dumb huh?
I think that I have called myself dumb and stupid enough. My stoicism is much more than that. I know that I am slowly recovering from that mindset and blogging has definitely helped the process. I doubt that I am alone in feeling that I want my life to be as "normal" as possible and be as "normal" as possible. I don't know how to communicate well about my RA because I have played it off for so long. I know people (we all do) who are the "great complainers", and they ANNOY me. "Whah", I think, "we all have problems." But, my problem is not being honest with myself, let alone honest to people who care about me. My health and possibly the safety of others (when I got in the car and drove when I definitely shouldn't have been) has been compromised by not communicating well.
Maybe, my attitude is a form of denial too .... not sure .... but I am over it. If you ask me how I am doing you might just get an earful. Don't worry I will be upbeat and as charming as possible about it. I will continue to share my stories and advocate and put my health first and be as realistic as possible. I guess that right now my life's reality includes dealing with RA --that is my normal.
As an aside, it is really nice to write and not have to use words like moreover, watershed, catalyst, and hegemonic. Those are great words to use while writing history papers. ;-) You'll at least get a B
My personal favorite ..... Consequently ..........
Saturday, March 7, 2009
Just because someone has a handicapped placard or accessible parking tag ... whatever term is used doesn't mean they have to be old, or ugly, or pathetic looking, or hooked to an oxygen tank, or have a cast, or use crutches. People who need handicapped spots shouldn't have to justify themselves.
A few years ago my husband and I went to meet some friends for happy hour on a beautiful evening at the MacGregor Village Draft House. I was having a yucky pain day in my knees and I was literally limping. Thankfully, there was a handicapped spot available. So, we parked and went inside. For those of you who don't live in Raleigh. MacGregor Village is across this street from an extremely wealthy neighborhood in Cary, NC.
After a fun evening of hanging out with friends, my husband and I returned back to our car to find this hateful note on our windshield. I kept it --at the time I was not quite sure why, but I felt like I needed to keep it. Maybe in the back of my mind I knew that I would someday begin to advocate for people who are sick. I knew that this would be an important subject to share shortly after I decided to blog.
The number at the bottom of the note is the Cary Police Station. Not knowing that it was the police, I called it after we got in the car. The dispatcher kept asking me if my call was an emergency. I was so confused. She eventually put me on hold. When she got back on the line, I read the note to her and asked her if a policeman wrote it. Her reaction was perfect; she reassured me that Cary cops would never do anything so rude, and assured me that if they were unsure of someone using a handicapped spot that they would simply check my records with my license plate number.
Then, she went on to say that the police understand that young people may need to use a handicapped spot, and they may not "look sick." Thank you kind dispatch lady ..... I should have gotten your name.
The note really shook me up because:
- I am a woman and this person called me a "fatass". I was on prednisone at the time, and it makes you puffy and "fat", so that whole assumption that people who are overweight are obviously lazy is completely bogus. Often, they are SICK.
- A stranger was so angry and hateful towards us and he didn't even know us. So, this was my first real taste of prejudice and discrimination. Of course, I had been discriminated against before, but not with such force.
- This "angry person" did not even see me limping ,and he posed as a cop. He was just so sure of himself.
- Sadly, I always take a look around when I get out of the car after parking; I have a slight fear that someone will just start ranting at me.
What have I learned from this?I know what it's like to be discriminated against, and it sucks. I try very hard to not make assumptions about people based on the way they look. Everyone has an individual story ..... treat them as an individual .... have the grace to give people the benefit of the doubt. And on "good days" I don't take the handicapped spot because there is always someone worse off than me. At the grocery store, I offer to take peoples' carts back to the store who are handicapped, because I've had my fair share of rough days where it was a struggle to shop and a struggle to get the cart back.
Here's a great website about not "looking" sick http://butyoudontlooksick.com/
Friday, March 6, 2009
Another thing about my life that is very exciting is my little 9-day-old nephew named, Orion ... "Ori". I can't express to you how cute he is ... and soft ... and cuddly .... and HANDSOME! He is a blessing that has come into my life at a perfect time. There have been quite a few days this year that I contemplated just staying in bed all day. If you completely fall apart someone will take care of you right?
Well, those thoughts were running through my head. 2009 has been pretty crappy. My husband left me in mid-January. Yes, he did, and the whole thing has really kicked my butt. On top of that, my RA has been pretty out-of-control as I explained in my last post. I have been having a hard time concentrating on school, and I had to drop a few classes, because I just didn't have it in me. I was. ... well maybe I still am to a certain extent completely overwhelmed ...defeated for once. The physical pain and heartache were too much.
Something inside of me wouldn't let me give up completely. I kept thinking about my "very" pregnant sister, Cassie, and how she needed my help, and how I wanted to help her and be there for her. I needed to pull myself together for her. I can't be a wreck when the family needed to focus all their energy on my sister. I was needed, and I was excited about a new little nephew to love. And then came Ori. Thank You, Ori, for allowing me to smile again and feel love and just be so happy that I giggle for no reason. Maybe when you are older, you can read this and realize how much you helped your Aunt get out of bed everyday. I love you.
Ok, that's enough sappiness for one post .... so black beans are nasty without salt. I made this huge pot of them yesterday and put about a dozen spices in them, 4 cloves of garlic, and a cooking onion. And they are still bland bland bland. eghhhhh. I am off to Whole Foods today to try and find some hot sauce without any additives. Any suggestions?
Thursday, March 5, 2009
Why am I blogging? Several years ago I thought blogging was stupid .... invasive .... a fad .... Well, things have changed, I've had some really nutty things happen to me. I want to share my story. I want people to understand what I deal with on a daily basis. If you can relate and learn and find courage from what I go through then I have succeeded. I am opening myself up to advocate for gimpy people (disabled is the PC term, but I like to call myself gimpy). I want people who are struggling to know that I am struggling too, and I keep my chin up and I keep going every day.
Ok, enough of an intro, I have severe rheumatoid arthritis (RA) in my neck shoulders, wrists, knees, and ankles. And, I have probably forgotten a joint or two. I have a slight tear in my left achilles tendon, I have right rotators cuff syndrome in my right shoulder and bursitis in my hips. Ouch!
Normally, I am extemely guarded about my health. I try very hard to blend in, and not "look sick". This attitude has both helped and hurt me. I will explain that in another post.
Yesterday, I couldn't bend my right knee very well and so I could barely walk .... good times! I have been sick for 5 years. I have my good days and my bad days .... good months bad months. Today is pretty good so far, but I want to clean my bathroom and walk my dogs, so I will probably be in a lot of pain after that. It sucks, really. I am having a bad month. I hardly have any stamina and little energy. My house is pretty messy and I think my German Shepherd is getting chubby from lack of exercise.
The last thing I want to do is throw a pity party for myself, but I want to share my struggles. Get things off of my chest. I have oodles of things to tell, but I will take my time. I will ease you into all of the BS I have had to deal with, and all of the beauty that I find around me which keeps me going.
I am thankful for my family and friends, my doctor, my mattress, NCSU and understanding professors. I will be a teacher someday, I may just have to sit down while I am teaching. My animals give me loads of furry love every day, and they make me wake up, get out of bed and walk them in the fresh air even on a "yucky pain day".
So, I am making some lifestyle changes and I am eating quite differently for the next 5 weeks. I will eat veggies, fruits, beans etc .... Wish me luck. I am clearing my body of additives. Has this dietary change been proven to be effective in curing RA? No. But, a girl's gotta try. It can't hurt.
And, just for the record my condition is not permanent. I will get better!
If you want to know how things are going or what it is like to live with RA check out my blog. I am going to post daily.