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April 2009



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Apr. 7th, 2009


Anne: Pity,Party Of One

Life is full of whirlwinds and roadblocks. I’ve grown nauseous from the consistent twists and turns.

Judgment helps no one,
And it belongs in the court
and the court alone
and I have never claimed to be ready for the witness stand.
Please don’t put me on trial, for merely living the life I have been given.

Judgment doesn’t help me. It does not heal me or anyone else. It does not assist in my journey. All it does is make me feel defensive, for an overall situation that I cannot change right now. I am essentially a forced housewife, with two degrees I cannot apply to anything, right now. I am destined to sit inside the walls of my humble abode day in and day out. So to escape the monotony, the minutia, the bland walls of this everyday home, I go out to the bar. This is something to look forward to every week. A star in my sky made of neon, and those neon saloon lights are the only things that even begin to breathe some life back into my often lifeless body. Please understand that if something beyond your control were to take your job away from you. Take your education away from you. Take your car and your essential freedoms away, that you too wouldn’t want to jump at any chance for some semblance of freedom. Some chance just to feel normal, even if it’s just for a few hours.

My walls are closing in around me. I fight my demons every day. The darkness covers me and suffocates me as I fight to break free. And I do fight, even if you don’t see it. My heart beat slows. My oxygen level drops. As I force another hand full of pills down my throat, and I wish this pill-stuffing monotony could all just end. But it can’t right now. It’s where I’m at. And it’s true that I’m sick of the paper-shuffle dance I do every day. It’s true that my feet hurt. That I am disgusted by county pharmacies and clinics full of IV drug users, people without tact and manners who are coughing all over me, and people who are bleeding on the floor and the chairs and the wall next to me as I wait. I am immune-suppressed. I should not be here. I am an educated member of this society. And I am fighting for my health.

I am fighting to “stay” healthy, so someday I can utilize the education I’ve spent so much time (while sick) earning.

And I am sick of fighting.

For something that should be obtainable.

Something as simple as my health.

Please know that when you see me smiling, when you see me have a drink, when you see me laughing on stage singing Eminem at karaoke, that THIS is one of the few moments I have to smile. Everyday is a mountain of paperwork, phone calls, and ridiculous hoops that I have to jump through like a trained lion - just to insure that I stay healthy. I cannot climb the corporate latter, nor make a wealth of money for my future planned retirement, right now, as it stands, I must do these things to try and stay well enough just to “live” each day. I’m not trying to change my appearance. I’m not trying to get over the flu. I’m not trying to stay off work. I am trying to get my body to do what many people’s does naturally. Just trying to keep my body from feeling like a train is running over it every hour that the hands shift on that never-ending, time ticking, son-of-a-bitch watch-hand. My body cannot process foods. It does not absorb minerals and nutrients from the foods that it does attempt to process. And on the off chance that there is a day when I can actually eat (like a somewhat normal human being) I am in so much excruciating pain that the thought of eating for the next week absolutely scares me to death. It scares the shit out of me. And a night at Mary’s or Face’s or (insert club name here) after 6 days of this fight, gives me fours hours, four coveted sweet smiling hours of reprieve.

My treasured friends who have known me for any period of time know that in the last YEAR alone I’ve lost almost 50 pounds, gained almost all of it back, and I’ve again lost almost 30 of that. In a year. I’m not dieting. I’m not exercising. This is what I deal with on a daily basis, due to where I am at, on the long-road journey that is this illness. I have pants in sizes that range from 7 to 12, and some men’s jeans, just to ensure that I can wear suitable clothing on a daily basis. My shirts range from medium to extra large. And my bras? From a size 34 C to a size 38 DD.

Since I moved into this house I’ve been to the ER multiple times. I’ve been in a doctor’s or clinic office at least twice a month on average (usually more.) A few weeks ago while sitting in, yet another waiting room, I realized that most everyone only goes to the doctor when they are sick. Which happens… once a year? When it’s not the normal cold and a little vitamin c will just kick it out? Most people only go to the doctor when they are sick enough to need their intervention. And think back to the last time you were at the doctor, when you were so sick you needed his/her help to get better - how horrible did you feel? I feel like that almost every single day.

Now realize that my doctor knows me by my first name, I have his personal pager number saved in my phone in case of emergencies… even the nurses know me (and my life story) by first name. My treatment nurse today called me (about paperwork!) and asked me personal questions relating to her daughter because of the CMISP hoops she knows I jump through. And all I gave her was my first name. No medical record number. No last name.

“Hi Maria, it’s Sara….” That’s all she got.

Please, take a second to think that through the next time you want to give unsolicited advice. I’ve tried sleeping. I’ve tried special foods. I’ve tried cutting foods out of my diet. I have tried exercise. I’ve tried aromatherapy. I’ve tried homeopathic remedies. I have tried temporary disability and I’m now applying for permanent disability…..at the tender age of 27! I don’t need things to try, all I need is compassion, understanding and unconditional love that so many of my truest friends supply.

I generally hold myself together. Everyone has seen my painted-on smile and knows that I run my circus like the best ringmaster out there. I handle my shit. I have things together and I have a ton to offer. I’m there for anyone at anytime and I try to be the best friend a person could have. I can be snarky sometimes. I have a little bit more attitude than I used to. But you handle persistent pain for over a year and tell me you wouldn’t do the same. I have amazing people in my life who remind me to laugh. We joke about the pain. We make light of the situation. It’s the only way to get through it that I’ve found. Sure, I could wallow. I could sit at home and not get out of bed for weeks on end. I could think, consistently about the fact that my body is potentially shutting down on me.

Or I could go out. Sing a few songs. Surround myself by people who love me and cherish me and whom I cherish too. I can be social and I can laugh.
Genuine laughter because I’m actually enjoying my life.

Give me those minutes. Those hours. Allow me to enjoy the parts of my life that I can. I will enjoy those times. And please know that if you don’t want to give me the freedom to do this without judgment, then I ask you to try to manage someone else’s life. Anyone’s.

Just not mine.

Thank you but I’ve got it under control,

All on my own.

Apr. 1st, 2009


Anne: The Pills I Take are Me; and I am the Pills

The pills I take are supposed to make me better.

Take my insides and somehow repair them and make me whole again.

But the damage that this disease has done is more than physical. It’s more than a tear in my colon wall. It’s more than an abscess. It’s not going to be fixed by resectioning. No amount of surgeries will ever make me the same again.

The emotional scars will forever taunt me. The pills I take are only a daily reminder that I am broken. My body wants to quit.

I take pills in the morning. I take pills in the evening. I take pills for pain and pills for happiness. I take pills to make it ok that I take pills. My pill bottles have become the tokens of my life. Without them, I am no longer me. Without them I cannot get through my day.

Call in refills two weeks in advance.

Take with food.

Do not mix with alcohol.

Take two hours after eating.

Do not mix with dairy products.

I have pills I have to take with other pills to enhance the effectiveness of the pills I have to take.

So many restrictions on where, what, when and how.

Pills govern my life.

Pills are me and I am pills. Without them I would not be here.

But with them I don’t want to be here……..





All Together Now


Mar. 24th, 2009


Anne: Remicade Induction Begins Again


Remicade infusion starts again.

Because I lost my medical coverage I was unable to continue with my treatments on a regular basis. I went almost 6 months without Remicade. When I finally got coverage back and was able to see my doctor he scheduled me for a colonoscopy. This procedure revealed that my right colon all the way to my rectum and sigmoid were fine but that the right colon leading into my ileum was completely inflamed; so much so that they couldn’t even get the scope through. This obviously means surgery sometime within the next six months.

I’m 27…..

I attend facilities at UC Davis Medical center. The staff and doctors there really are wonderful. But the process, even though they try to make it as humane as possible, can only lead one to realize how sick they truly are. I enter the treatment room and there are two reclining chairs. This is a two hour process so they attempt to make it as comfortable as possible.


As the IV is placed on my arm I realize again, that I am sick. There are two IV bags. One of saline solution, and one containing my medication.



IV Bags


There is a television set up in the room for patients to watch movies if they like.



Notice however the multiple medical garbage cans underneath the TV. One with a bright red bag to indicate some sort of hazardous medical waste I’m sure.

And I’m closed off to the world by the infamous medical curtain. Supposedly so I can have some privacy, but I can’t help but feel that it’s partially because no one wants to see me sick….



As I sit there I realize how sick I truly am. I am 27 and this isn’t right. I shouldn’t have to change my diet. I shouldn’t have to worry about exerting too much energy. And I surely shouldn’t have to worry about the arthritic affects the Remicade gives me for about a week after treatment. I shouldn’t have to take 27 pills a day…. Just to maintain some modicum of normalcy. This isn’t fair.

The private room is nice I suppose. Even though there’s a medical sink off to my left, including the BIOHAZARD waste container. The nurses get us snacks and drinks. Turn on the TV for us or just let us read.

The Sink




But the reality of the matter is I’m losing half of my colon within the next six months. I’m in the process of starting a disability claim for myself. I’ve already made initial contact with lawyers. And I’m 27. I haven’t even made it halfway through life yet. Or perhaps I’m more than halfway through MY life already and I just don’t know it.

And I have a bruise for weeks to remind me….. that I’m sick.


Mar. 18th, 2009


Anne: 01.16.09 ER Trip

Last year, December 2007, I rushed myself to the hospital at UC Davis Med Center because a doctor at the clinic downtown told me I might have appendicitis. The week before I had blacked out (something I’d never done before) and I was damn near unable to walk. I waited almost 17 hours in an ER before anything was figured out. And at the time, it was like pulling teeth to get the woman I loved to sit by my side. I was under the impression at the time that I HAD to go to UCD to get medical assistance because I didn’t have medical coverage and the way the clinic doctor presented it made it sound like ONLY UCD would work with me. So I sat through the grueling hell that is the UC Davis ER for test after test. I was told at that time that I had Ulcerative Colitis. After a week’s stay I was discharged and put under the care of an Oncology doctor.


Throughout the next two months I was finally able to be seen by the doctors I needed to see, in Gastroenterology. I was told in February of 2008 that I had Crohn’s disease and was put on state medical disability. I’ve worked, straight pretty much, since I was 14, so for a Doctor to tell me I wasn’t ALLOWED to work was dramatic for me. But I followed doctors’ orders and just finished out my schooling. I graduated with my second bachelors degree in May of 2008 and have been on the interim ever since.


When I moved in October of 2008 (my THIRD move that year), paperwork got lost in the shuffle and even though I wrote a letter to CMISP (California Medically Indigent Services Program) stating that, without proper health care coverage, I was only destined to end up back in the hospital with another flare up of Crohn’s, they denied me coverage because the paperwork was late. So for the last few months I’ve been dealing with a chronic illness with no medication, no pain pills, and no coverage whatsoever.


Thursday, January 16th, I had simply handled enough. I went back to UCD ER because my attending physician belongs to the UCD Med Group and I want to continue seeing him, if at all possible. He knows my history. He knows what I want and don’t want. We’ve developed a working relationship that WORKS for the two of us. I sat in this ER for eleven hours. I watched paranoid schizophrenics walk around the ER dancing, clapping, and telling people that there were women giving birth in the bathroom and there was a man there waiting to rape the babies. And that all she needed was a shot of affection. I watched a woman there supporting a family member, knitting, with a sharp pair of scissors in her grocery bag. Only wondering to myself when the schizophrenic was going to lose it, steal the scissors and go on a rampage. I watched two women come into the waiting room from ambulances, and be forced to sit there. One woman came in just after me and was still there when I left. Thankfully I had two wonderful friends who sat there with me the entire time this time; deprived of food, showers, sleep, etc., the whole nine yards. They weren’t going to leave my side. There was no way they’d let me go it alone. That made this trip a bit more bearable than the one I had over a year ago.


But in the end I was triaged five times in my eleven hours. Each time the pain was getting progressively worse. I told three different triage nurses about the excruciating pain I was in. I told the last two that a new, burning sensation had developed in my colon, in the same area as I knew I had a perforation, and was still sent back to the waiting room. I gave up my faith in this ER when people who walked in after me, significantly after me, and who had no visible signs of pain or discomfort, were taken back to see doctors before I was. I left, with no pain management and no diagnosis, after sitting in the waiting room for eleven hours. And after the last triage nurse told me he was just going to check my vitals and send me back to the waiting room, disregarding the fact that I was balling tears of severe pain, and had a pain I had never felt before, I left. Broken and disenchanted with the medical community.


When I got home I got a phone call from SDI pretty much stating that my ONLY form of income was in jeopardy because one of the stipulations to receiving this money was to be in constant care from a doctor, and since she could see I had no current medical coverage she was pretty sure I wasn’t seeing a doctor. I told her I had been in the ER that morning and she pushed my check through. But this only forced me to have to go BACK to an ER so that I could hopefully get re-enrolled in CMISP and continue on my path with my doctor. But my dreams were shattered and I knew I couldn’t go back to UC Davis. So I packed myself up and went over to Sutter General Hospital.


I had signed in no longer than two minutes before I was called to “check in” and given the appropriate paperwork to initiate my CMISP application again. I wasn’t even able to finish the paperwork they required before I was brought back to triage for the first, AND ONLY, time. A bed miraculously happened to open up at that minute and I was in a bed in, literally, less than 10 minutes. I saw a doctor less than five minutes after that. And my RN, who had just started his shift and hadn’t even made all his rounds yet, was in my room in less than two minutes after that to start an IV and administer pain medication.  Within the hour I was prepped and moving down to Radiology for a CT Scan. Another friend arrived shortly thereafter to ensure that I was taken care of and brought home safely, after the pain meds were administered. Promptly about 30 minutes later the doctor was reviewing the results. He wanted to rule out appendicitis because of the new type of pain I had been having. I was in and out of this ER in a total of four hours; treated and tested, and given prescriptions to start my treatment again.


There was a drastic difference in the way I was treated in these two hospitals. At UCD I felt like merely a disease that no one wanted to treat. A disease, by the way, that is immunosuppressant, and merely sitting in the waiting room for so long could have lead to complications. At SGH I felt like a person WITH a disease. They treated me. They wanted to help me. They could see that I was in significant pain and they wanted to do EVERYTHING they could to help alleviate that.


I realize that UCD is the only trauma/shock/air rescue center from Fresno to the Oregon border. I also realize that they handle, directly, all the prisons and jails in Sacramento County. I realize they are a teaching hospital and because of that sometimes procedures take a little longer.  I realize that people need to be seen, supposedly, in order of severity and those that come in ambulances (usually) get priority. And I didn’t mind waiting – at least a little while. But it seems that every time I go to UCD I have AT LEAST a ten hour wait. My first visit there I thought I had appendicitis, and could have burst had that been true, in their waiting room. And they didn’t seem to care all too much.


Our health system is backwards and screwed up. At UCD I was put behind everyone else because I didn’t have medical. I realize they handle a lot but if they can’t properly staff and assist the general public, they shouldn’t be open to the general public. People go to ER’s for help. Because they need help they can’t WAIT to get from their primary physician. No one wants to wait but people would be willing to wait if they felt they were being adequately treated. I saw no fewer than 5 people (including myself) walk out of the UCD waiting room, hopefully to other hospitals, because their condition was so sever they COULDN’T wait any longer. No one should be denied medical care because they can’t afford it. No one should have to transfer themselves to another ER because they aren’t receiving treatment. No one should have their only source of income threatened because the same system that deemed them unable to work in the first place, is now denying them medical coverage that is needed and documented. No one should have to go through the pain of jumping through hoops to make ends meet, when they can’t even walk the stairs without being in pain.


Our system caters to the wealthy, the employed, and the healthy. Medical coverage is supposed to be designed to help those in need, those who have reason to see a doctor on a regular basis, not someone who has the common cold and can’t wait for a doctor’s appointment, or just needs a reason to get out of work, simply because they are employed and pay for the medical coverage. These systems are in place to help us live a longer, more satisfying life. Yet they take those of us who are at our lowest, and attempt to push us even further down. If, for some reason, my CMISP hadn't been approved, not only would I have been billed for the ER visit, but my SDI would have been revoked and I would have been forced to go back into the work force; something I don’t mind doing when I know my body can handle it. But until that time, I should have no fear of losing my income, my medical, my home, my life because our system doesn’t want to help me.


And yes, there are programs like COBRA in place to assist people without health care. But the basic COBRA package costs over $400 dollars a month, and when the state has deemed me able to live on less than $1000 a month, that medical coverage is more than I can handle. So, again, I can’t afford the proper coverage, and I’m pushed to the bottom of the list. I’m no longer even a chronic disease, I’m merely someone who can’t pay, and therefore doesn’t deserve treatment.


There are countries out there with Universal Health Care. I know that change is scary for us, especially in these economic times. But with a new President in office and the promise of CHANGE imminent in his presidency, it is about time that we got back to the fundamentals of life. We need to be able to give health care to everyone; regardless of race, culture, religion, sexual preference, or class. And sure, some procedures that are still “elective” should cost money. Something affordable. Something attainable for the general populous. These countries that have implemented these programs have happier citizens, healthier citizens, people who are willing to work and give and get back in return. Universal Health Care is not unattainable in our country. There is no reason someone should have to spend the night on the street because he or she doesn’t have a job, and possibly sit through the agonizing pain of an appendix bursting, or a heart attack, simply because they don’t have coverage. Who are we to decide who is worthy of living a healthy life and who isn’t? Who are we to play GOD with these people’s lives, and tell them because they have no money; they have no right to treatment, to live, to be happy? Why do we let ourselves die a slow death because the doctors are in the right pockets of most pharmaceutical companies that give them bonuses to write prescriptions that are unnecessary? And who are we to allow heads of medicine to deny treatment to someone simply because they have a quota to fill and the medical coverage denotes that they MUST deny a certain percentage of procedures yearly? Who decides who gets denied? And WHY in the world is NECESSARY treatment EVER denied?


Our country as a whole is only as healthy as is sickest individual. Because we cannot find a way to work together to make sure this person is happy, healthy, and whole, we will never be either. I should be able to walk into any hospital, any emergency room, and receive the SAME treatment based on my illness, not based on my financial ability to pay. As should every other citizen in this great nation. Our medical professionals go to school to save lives, to help people. Not to watch them wither away.


Please consider these things as President Obama takes office. Consider if you lost your job and were denied your cancer treatments, doomed to live out the rest of your days in pain and agony because you can’t pay. Health care reform is not a luxury, it’s a necessity.