Tuesday, June 26, 2012

a myriad of thoughts...

I have been learning a lot about being someone with chronic illnesses here lately. This is going to be a very personal blog entry, if that may freak you out, do not read further, I really do this more for me than for you anyway :) Let me do like a top 10 list or whatever number I chose to stop at, then tell you a story you won't believe, then tell you some good news, ps this will obviously be a long post, but I promise to try and make it good :) Why am I giving you the run down? This is my blog, I can do whatever I like really...
So anyways...
The top _____ things you learn when you have chronic illnesses:
1. ALWAYS advocate for yourself...NEVER and I mean NEVER settle for a treatment, a death sentence, being told you will never be able to do "x" again and know that doctors are not God despite their belief that they are...they are humans, they make mistakes, they don't know everything. When they make mistakes stand up for yourself and infrom them they are dumb (but hopefully in a nice way)
2. Try to maintain a social life. Have a core group of friends, try to make sure that they understand that yes you do have limitations, but it is very nice to be invited to do things. Never promise to do said activities, but promise to try. Also, try to make sure that it means a lot for you to be invited even if they think you can't do it, because honestly we don't know what we can do on a certain day, how is someone else supposed to know what we are capable of on that day ahead of time.
3. Don't feel sorry for yourself. Yes it stinks, yes its hard, but you are not the worst off person in the world. There is someone that has it way way way worse than you do. Even though I have to literally repeat that in my head over and over all day long in my head to try and stay positive ;)
4. People don't matter. The people that look at a seemingly healthy looking 26 year old get out of her bright yellow sports car in the handicapped parking place don't matter. What matters is that you know that if you park in the non handicapped parking place to save face you will pass out before you get to the door of the store/restaurant/etc you are going into. (P.S. If there is a non handicapped space directly next to a handicapped space, I always take that space instead because again I know I am no where near the sickest person in the world, and someone sicker than me may need that space...but if the nearest space is halfway down the parking lot, heck ya I'm parking close...who wants to pick someone passed out up out of the parking lot, really)
5. Blogging really helps. I know I don't do it as much anymore...but it does help. It hurts to type like I've said before, and I honestly don't have the mental energy it takes to do it most of the time once I go to school and study. I barely have the energy to make it to the bed most of the days let alone blog. It helps to be able to type anything and everything to a cyberspace thing though...I know I know the people that read it, but it still feels safer than face to face contact.
6. Medicine sucks. I was never a medicine fan. I almost died because I didn't take my meds right, then almost died because I was taking the wrong meds. I gained 85 pounds in 4 months because of meds. But medicine also sometimes keeps you alive.
7. Have a support group. Whether it be a facebook group with people from across the world. A group of people you physically get together with. Or anything in between. Have a support system of people that actually deal with what you deal with. Not people who think they know how you feel. This will help you more than you can now. To be able to go and type on a support group page I feel this way and this way today and 15 people write back it makes you realize you are not alone, puts things in perspective, and helps you realize you are not crazy.
8. You are not crazy. Just because an idiotic doctor that doesn't know you thinks you need a therapist you do not need a therapist. He needs a therapist (P.S. the idiotic doctor may or may not be the story I'm referring to for later)
9. God created you. He knew you were going to be sick, He still loves you. He knew you could handle it. He knew you would be mad and upset and cry, but He knew that you, my friend, are an overcomer. The Bible says so. This is the verse I say over and over when I'm mad at my body.
"Oh yes, you shaped me first inside, then out; you formed me in my mother's womb. I thank you, High God—you're breathtaking! Body and soul, I am marvelously made! I worship in adoration—what a creation! You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, The days of my life all prepared before I'd even lived one day." Psalm 139:13-ff Message version
You thought I was gonna go to 10 didn't you...no I'm getting tired. Time for a story you won't believe...or maybe you will, then some good news.
So yesterday, I met the dumbest, most arrogant doctor ever. I thought I had a cyst so I had to go to this new gyn that I have NEVER met. He checks me out, is nice enough...then the tides turn. He is scrolling through his tablet and looking at my med list and my diagnoses and says hey, i know i don't know you really well, but i can i ask you a question. I'm like sure, he's like doesn't it suck to be 26 and be on disability? I'm all like sure but don't really have a choice...obviously the wrong choice of words on my part because then this happens. Dr.: "Well, I'm going to tell you a story. When I was 16 I had back pain and I went to 3 doctors. One told me I was going to be in pain for the rest of my life and on pain killers, one told me I could use a TENS machine to try and curb the pain, the 3rd told me I could do weight training and I would not have to be a slave to pain pills and treatments and be disabled for the rest of my life. Don't you feel useless? Don't you feel like you're wasting your life. If you would just exercise then you wouldn't have any pain and you wouldn't pass out anymore because you would be in shape. Also, it seems you've gained a lot of weight, exercising and eating right would help that too." (Not a real direct quote just to show you where he about stops talking) At this point in the story I am sitting there crying hysterically, shaking, and livid, and I'm sure my Blood pressure and heart rate are sky high which is the exact reason I got a 2 day stay at the hospital last week. I don't even know what to say. The only thing I can muster up is: Me: "Well, you obviously have never met me before in your life or know nothing about me. You obviously don't know that I spent the entire time the olympic track and field trials were on the tv watching them going that should have been me. You don't know I all but refused every medication that was ever given to me because I believe in natural medicine as much as possible until I almost died a couple of times from not taking my medications. You don't know that I miss teaching, I miss my life, I do not enjoy being 26 and laying in bed all day when I'm not at school because that is the only thing I can do right now. You don't know that I'm fighting my battles every day to become a dietitian and help people eat right and not get as sick as I did with my disease. You don't know that the reason I am overweight is because I gained 85 pounds in 4 months on a medication and since we quit it 1 week ago I've already lost almost 10 pounds. You don't know that I'm allowed to take up to 4 pain pills a day and most days I don't even take one, because I don't want to be addicted to drugs. You don't know me at all." At the end of this freak out and crying and still hysterically shaking...then he proceeds to say well I think you should see a therapist because I don't think you are dealing with your chronic illnesses very well. First of all, from the information given where am I not dealing well. Second, I'm only crying because you're an asshole...excuse my French. Then he goes, I don't know why you're so upset I was just trying to be sympathetic with you. Then I'm so upset I don't even read my visit summary until I get in my car and I'm looking over my diagnosis list and see that he has added obesity to my diagnosis list. First of all, according to the BMI, I am not obese. Second of all, how are you going to add a diagnosis without telling a patient. Third of all, did he not read when the nurse typed in the medication reaction I told him about or listen when I told him about the medication reaction. Obviously my weight problem is not because I eat 12 big macs a day, its from medication. Idiot. He was very far from giving me the sympathetic vibe...needless to say I will not be seeing him again and the director of the organization he works for will be getting a formal complaint from me. Just sayin. He was completely out of line and if he is a gyn he should be empathetic and nice and know how to deal with women who are hormonal and freak out when they're being harassed. Anyways...now to the good news.
When I quit my job I was fortunate and blessed enough to receive cobra health insurance. It was wonderful, I really needed insurance obviously and it was there. Well, now several months into no income to very little income I just couldn't afford it anymore, let alone the high copays it comes with and the medications I had to pay with. Most months I am spending more on health care than I receive for my disability and I'm leaving some things out that would help me stay better like vitamins and chiropractors and good for me food etc. Anyways, I finally took the plunge and applied for medicaid. I had my interview today for it and they told me I would definitely be approved. On July 18th I will have health insurance that I don't have to pay almost 500 dollars a month for which is over half of my disability check and doesn't even include meds or doctors visits. I am so, so blessed by this opportunity. I know that some people think that people like me living off the government are bad and it's not fair that you are paying our way and blah blah blah and I honestly felt that way on August 31st. I felt that way about 4 weeks ago actually. But there comes a time, when the cards are so stacked against you that you just cant swim anymore. And there are people like me (and hundreds and thousands of others) that do not abuse the system and aren't trying to do it for pleasure or anything. There is no way my healthcare could be afforded any longer based on my income. It was ridiculous. And I don't think that it is fair for my mother to have to continually shell out several hundred dollars a month to take care of her adult child's healthcare needs. I don't think its fair that this was the card I was dealt, but I am very glad the program is in place for people who truly need the support. To be clear, I also don't think it's fair that there are people that do take advantage of the system and abuse the system. I try not to do this as much as possible. So for now, yay for me. Yay for me finally being able to save some money, pay some forward, and try to become more self sufficient. Because as mom told me, we have to figure out a way for you to get ahead because I won't be here forever...but that's not something I need to think about right now hopefully. Anyways, so there goes the world's longest blogpost. Hope you enjoyed :)