I didn't think that I was going to cure myself .... so maybe that's why it didn't work .... oh the anxiety that I have from being chronically ill ..... I wouldn't wish it on anyone.
Seriously, the RA is still hanging out obviously, but I would suggest that diet to anyone. Really, I would. Why? "Because Jesus ate locusts for forty days and forty nights, this diet ain't nothin. Come on, WWJD really! Not to compare myself to the son of God or anything .... I'm just sayin."
I got so many "OMG I could never do that" reactions. It got to be a little perplexing. So I came up with all of these funny (well funny to me) come backs for people. It was only five weeks, and the reactions that people had really were quite amusing, it helped keep me going in a way.
Why would I suggest this diet to anyone?
It is a challenge, and it made me feel better. (Fell short of a miracle cure though.) I am not the daughter of God after all .... not enough locusts I guess.
Gave me more energy.
Cleared up my skin.
I lost five pounds.
I remembered how much I like sunflower seeds.
I found new and inventive ways to cook with every hot pepper that you can possibly think of.
I kicked my coffee habit .... now I have one cup a day and that's it! Maybe that's still a little bit of a habit, but it is a vast improvement.
I realized that I have a problem with salt. I LOVE SALT and everything salty. Five weeks of refraining from salt has reset my "salt-o-meter". I am not adding salt to my meals now and I am hardly cooking with any salt. Now, if I eat something that is very salty it tastes nasty to me.
I realized that I can take or leave sugar and all things sugary.
Essentially, I learned a lot about my eating habits and I accomplished something that made me feel better.
As my good friend Dawn who happens to be a North Carolina native told me, "You don't have to add fat back to a meal to make it taste good." I have never eaten fat back, and I really don't even know what it is but Dawn brought up an excellent point. When you give up sugar, salt, starch, preservatives, salt (oh I already mentioned salt), dairy, meat ..... So, what the hell did I eat anyway ..... When you give up all of that your mind begins appreciate simpler foods. After my diet was over, I had a salad with some good seasons all natural dressing drizzled over it. I cannot explain how happy my taste buds were ......That salad was amazing ..... and it didn't even have any fat back in it!
Ok, so it is to the point where I am laughing kind of? Sort of, but I still have to make several phone calls and be put on hold and .....
What am I referring to? I had my first transfusion about three weeks ago and I received the first bill in the mail yesterday, and it is wrong. It took too long (about a month) to get everything supposedly figured out between the Duke transfusion clinic and my insurance and me ..... because I had to go and be nosey and ask how much Orencia would cost me. It was practically an unanswerable question for reasons unknown to me. Check out my blog called Mexicoma. I can't bring myself to explain the whole, "how much will this cost me fiasco again."
The bill has the wrong doctor on it and the wrong drug, but it has my name and patient ID number on it. Did I receive the correct drug three weeks ago? Who is this doctor? Did they think that I was another patient? Or, is this a data entry error? I have a bad feeling that the billing department messed up which isn't as bad as them pumping the wrong drug in my vein .... not even close.
BUT, the billing mistake means that I may have to talk to the lady who drove me crazy as I tried to figure out how much Orencia would cost me. She is very hard to understand because she doesn't make any sense. When I was younger and didn't understand someone or something I blamed it on myself. These days, I am a lot wiser and as the saying goes, "I can smell BS a mile away." I have no faith in this woman, and I worry that she will just mess things up more. Damn!
I want an assistant!
So, on of my themes for this blog is that the health care in this country is a mess. Here is one more example. You may think that I am being harsh, negative, and critical. And you are right -I am. But I am also pretty burned out from the health care system ...... I am not alone.
Please note that I complain mainly about the bureacracy and the expense of being sick. I have had countless good experiences with health care providers. The business side of being sick makes a point to vomit on everything and then it all kinda stinks. And they don't clean up after themselves either.
Ok, so now I am supposed to be at the part of my blog where I learn a lesson from my troubles.
The lesson is ...... never assume that people are confusing you because you are not comprehending things correctly. Sometimes, that person is ..... you fill in the blank. I am at the positive feel good mushy part of my blog so I can't go there.
Have faith in yourself and get to the bottom of things!
Lesson number two: Your mother was right, you are not going to like everyone that you have to interact with so suck it up .... Unless you have an assistant, then lucky you!
Having a bad pain day today. I am feeling a little better right now since I took a very hot bath after class. Sometimes, I feel so yucky that I feel like I am in a pain bubble ...... It's like I am on the drug called "pain". Because, it is more than just feeling pain. I perceive things differently, I am on my own island and I dare not invite anyone. Time goes by slowly since it takes me longer to do everything. I walk differently ... or I don't walk. If I have to leave the house .... which is most days .... I go into this zone of adaptation. Wait that is not the right word ...... struggling to get through the task at hand basic survival.
I concentrate on things people normally don't even think about. For example, even though I am hurting I have to walk and focus on the path of least resistance. How will I walk up those stairs in the least amount of pain? My ankles hurt and I walk flat footed so I don't further aggravate my achilles tendons. I have to put my bag over my left shoulder because my right shoulder is screamin (even though I am right-handed and having my bag on the left feels weird.) Now that I have sat for awhile and listened to a lecture on classroom management I have to stand and everything is going to hurt and it will be hard to walk .... hard to straighten my legs. Should I take the stairs or will it take long for the elevator to get to my floor? Which option will be more painful? What in the HELL did I do to deserve this?
I gotta go home and sleep this pain off! See what I mean about being in a lot of pain is like being in a drug haze? However, it's not ANY fun.
Socially, I keep to myself, I have to spend so much attention on getting through whatever I am doing I don't really talk to anyone. You know ... they aren't on that drug called pain so they don't know how I feel. I am on my own. I think people who are addicts probably feel this way when they are around sober people. So, I am around a bunch of healthy people ..... and they have no idea how much I am struggling
Pain Pain go away don't come back so I can ....... walk straight.
When I think of placing more beans in my mouth and swallowing them I feel nauseous.
This diet has been quite a journey. I can no longer eat beans, I have eight days left ...... I hope that I can make it.
I finally got the anticipated transfusion of orencia today. I had a 9 am appointment, and the transfusion went very smoothly. It didn't hurt and the room was very calm. I had this idea that I was going to bond with my fellow transfusioners .... but no such luck. the lady next to me was asleep. On the other side of me an old man was listening to his ipod and the lady across from me fell asleep. I was wired and a little anxious about the whole process, so I was very alert and fiddled with my phone while watching Regis and Kelly since I left my book in the car.
That's all that I got for today because something smells good downstairs and I am starving.
On Sunday and especially Monday, I felt really good ... really good for me anyway. I went for about a half hour walk with my friend Jill and and our dogs .... which is long for me these days. I had a lot of energy .... my ankles were better than they have been in months. Good days make me hopeful .... maybe my RA is fizzling?
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.
I have been writing about the negative aspects of the health care that I have received since I have been diagnosed with rheumatoid arthritis. Right now ... I think that it is time to give a shout out to some health care providers who have been pretty awesome and who have helped me tremendously.
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.)