Saturday, November 15, 2014

Speak up, agitate, organize, liberate, change the world by combatting stigma now! Tell your stories. Live with mental illness? Say it. Formerly homeless? Put it to words. Experienced chronic illness? Tell people.

Hey folks,

Today was a great day! I got to attend a National Organization for Women function in a town about an hour away from where I live (a ticket was kindly donated for me, which was very nice as I otherwise would not have been there).

The keynote speaker was a woman who helped shape my feminist mind in the 1990's, Patricia Ireleand. She was the national president of the National Organization for Women (NOW) from 1991-2001, the years during the Anita Hill hearings, the Monica Lewinski scandal, and the changing of my viewpoints. These were the years when my intuition that had always felt Ms. Piggy and Wonder Woman were more awesome than others realized, led me to become the black sheep liberal, vegetarian, feminist, who I still currently am. I started reading Ms. Magazine and Sassy. In Ms. people were actually saying things like "I believe Anita Hill". People were actually writing "listen to the woman in this story". People like Patricia Ireland were on CNN saying this, and I paid attention. They were so different from ultra-conservative, totally Republican family, and I had no idea before then, really, that such people even existed. After all, I spent elementary and part of middle school in a evangelical Christian school where were taught that memorizing Bible verses was more important than science, that there was no such thing as a dinosaur, and that rock records, played backwards, held Satanic messages in them. We were taught that the band name, KISS, stood for "Kids in Satan's Service". And I could go on, and on, and on.

I was a feminist from a young age, when I declared to my misogynistic grandfather that I would never be a slave to any man (in those exact words), and would never get married. He made me put it in writing, so, at age 8, I did. I wrote my "affidavits" and had them notarized by family members. He saved them for years because he planned on humiliating me about it when I eventually did get married. Well, he's dead now, and I'm still single, so that day never came, may he rest in peace.

In the 1990's the world was embroiled in changes, and so was my young mind. I refused to do any dissection of animals in my high school biology class and stopped eating meat after I saw what a dead fetal pig looked like and realized why bacon had always  disgusted me. I started an environmentalists' club with some science teacher whose name I don't recall. I began to believe in women like Anita Hill. I refused to go to the pentacostal, crazy church where I grew up any longer, particularly after the day that the assistant pastor was on the news for molesting some of my friends.

I changed. And one of the people who helped me make that change was Patricia Ireland. I got to pick her brain today at the luncheon where she was keynote speaker, and I was honored to sit at her table. "What was Betty Friedan like? Do you know Gloria Steinem well? Have you met Hillary? What about Bella Abzug?" She probably got sick of my questions! But what she said to me were some of the most important words anybody has said in a while. She told me that it was very good that I speak out about my "issues" I've lived through because most people do not do that, and telling the truth about things is the main ways that social changes are created.

There are things I don't talk about on Facebook, but which I have talked about here. Things like being sexually assaulted while psychotic (three times), for example, I do not write there because such persons as my mother, my father, my one living grandmother, etc. are on Facebook, and they cannot handle that information. There is a reason why the book I co-authored with Jessica Leach, Episodes of Schizophrenia . There are things I rarely ever talk about at all, with and I had to delete the info here, sorry. There are things nobody really wants to hear about, which is why it is so goddamn hard to get social changes created. We would rather be like the "ostrich" (checkout a great song called "Ostrich" by Carla Duren). It's one of my favorite songs, sent to me once on a cd by my great friend Lauren "Wildflowyr", and I am listening to it on Spotify as I type this.

So there are things, like everyone, that I don't advertise about myself. However, there are things that NEED to be talked about. The fact that people don't talk about them hurts us all who live through them. The fact that people don't talk about them is why they will continue to happen until, someday in the next millenimum, people do. So here is what I wrote about it on Facebook. I wrote, that Patricia Ireland told me that it is very good that I talk about the issues I've been through, as that is the way change is created. And....

And that, folks, is a belief I have long held at the molecular level. As one of my favorite, feminist poets, Adrienne Rich wrote, "Lying is done with words, and also with silence." As Audre Lorde, another famous, feminist writer who greatly influenced my life wrote, "Your silence will not protect you." As Zora Neale Hurston, a greatly underappreciated author wrote during the Harlem Renaissance, "There is no agony like bearing an untold story inside you."
Florida needs two monuments in Tallahassee: One, for Patricia Ireland (she lives in Miami). a groundbreaking long-time national President of NOW who, when I was a teenager, helped me became a feminist. Secondly, one for Zora Neale Hurston, a well-respected author who died in a poor house and whose reputation as one of the best American writers of all time comes from the fact that Alice Walker, another great African American feminist author, resurrected Zora's work in the 1970's, If you ever want to see what one of America's beloved author's former hometown (which was at the center of her books) looks like, take a detour from your way to Disney on I-4 and visit Eatonville. You may be surprised that, not only is it in shambles, as I discovered in the 90's, but also, there's no freakin' monument to Zora there.

Thanks to women like these people, I firmly believe that, as a woman, as a feminist, as someone who believes in social change, the incredible stigma against those of use living with "severe and persistent mental illnesses" needs to be bashed, like, tomorrow. And it never will be, unless we all speak out. Your family may not want to hear it; you may need to find friends who accept as you are when others don't. But this is the only way we will change the world for everyone who lives now with mental illness, and everyone who comes behind us on this planet and has to live with it. Big Pharma is not going to save us. Eli Lilly may profit from us, but social change doesn't come from corporations. Social change comes from opening your mouth, or typing on a keyboard. Social change comes from talking and from writing and from advocacy and from activism and from not shutting up when everybody around you thinks you should. That is where social change comes from.

So, yes, I have Schizoaffective Disorder, formerly diagnosed as Schizophrenia. It's something I live with and it does not define who I am. However, it is something that you probably don't know anything about. It is something that you cannot tell I live with by looking at me. And it has radically affected my entire existence for many years. So if you don't know anything about it, please ask questions. Please read. Three feminists gave me checks for my first book today, because they probably believe, more than the average person, in the importance of women trying to create change.

Yes, I have Lupus, another illness probably no one knows about and it took 19 years for the diagnosis to be definitely defined, along with Sjogren's (have you heard of that?), and Fibromyalgia (which I got in the 90's as a 19 year old and no one had heard of it then, there were no Lyrica commercials then, and all of us were told "it's all in your head"). What do these illnesses have in common? 90% of the people who have them are female. Why do you really think there is no cure for them? And with Lupus, those women are often African American.

Yes, I have also experienced homelessness. How many people have you met who would tell you that without your being able to guess it from looking at them? People are ashamed to say the words. Adrienne Rich also wrote, in "Diving into the Wreck", "the words purposes; the words are maps". And indeed this is true.

Thank you, Patricia, and all of my Facebook friends and people I've met in life who were willing to listen and who cared. Thank you, National Alliance on Mental Illness, for stopping the myth of the "Schizophrenogenic Mother" along with the help of feminists, when society tried to blame this illness, as has been done since Adam, on women. Thank you truth-tellers, blog writers, book authors, public speakers. Thank you advocates, activists, and world changers. You are who will create a better future for this planet.

Also, I want to add, the reason why people assume every homeless person is pan-handling on the streets or sleeping in a park, is usually because they see men doing this. Homeless women often do not do such things, since homeless women, and more particularly homeless women suffering from mental illnesses, are at a huge risk of being assaulted, and many are, and they all know that that this risk exists. Therefore, try to banish from your mind the idea that everybody who looks homeless to you defines what a homeless person looks like. You might see homeless people at libraries. What I did when I was living in a shelter the first time was spend all my time in libraries (shelters kick you out during the day; you have to find somewhere to go), and I worked on a Women's Studies website to complete a women's studies honors course at the Community College of Baltimore County at Essex. Thank you, Dr. Rae Rosenthal. I was supposed to go to Smith College that year. I ended up sleeping in the back of my car in a Kmart parking lot instead.

Please try not to make assumptions. You probably know many people who have lived through many, many horrific things they never talk about. That's part of the reason so many folks continue to believe horrific things don't happen and then crucify those who say they actually do.

Thank you, to all of you blog readers like "Borderline Lil" and Leslie from Baltimore, and everyone else who ever reads this, because you mean a lot to me, more than I can ever express.

I encourage everybody who wants to change the world for those of us living with mental illnesses to begin talking about the ghosts in their hypothetical closets. If you can't talk to your dad about it, like I can't either, try writing about it. Blogger is awfully easy to use, and from what I've been told, so is Wordpress! There are numerous Facebook support groups for people with Schizophrenia and Schizoaffective Disorder. There are all manner of outlets. If you want to write anonymously, do that too. But there is something that counts about your name. Your name means, "You may know who I actually am and I am not ashamed to tell you it." 

My name is Jennifer. And I am not afraid to tell you that.

Thanks for reading.

Tuesday, November 11, 2014

Coping Through Tremendous Stress: Finding the Calm Inside the Storm

So this is going to be a post about coping skills. It's not going to be a litany of complaints about my life. I would prefer to briefly describe what's going on with me, and then get to the positive ways of coping with things which I've been trying to implement.

STRESSFUL STUFF:

My cancer scare, thank the Universe, is over. However, I still have pain. It's most likely due to Endometriosis, because I've had that for most of my life and have had surgery for it before. I've opted out of surgery for the moment and am using a form of birth control to try to deal with it.

I have to find a new job ASAP. The college where I've worked for over six years is laying off everyone in my position in January. This sucks. I wish to hell that we had a union, but of course we don't because this is Florida and you don't find a lot of unions in Florida. Florida sucks. Did I ever mention how much I hate living here? The Communication Workers of America Union actually had a drive to try to save call center jobs from being outsourced, and I remember the times I collected their pamphlets on that, meaning to distribute them to my coworkers, but then realizing the idea was futile, and would most likely result in me getting myself fired.

Did I ever mention the college fired me for being in the hospital? They did. There were three of them on the phone, a human resources manager and my boss, and my boss' boss. They told me that my services were no longer needed. Since I had previously filled out a request for reasonable accommodations under the Americans With Disabilities Act, I told them they were violating the ADA (which they clearly were), and that I would see them in court. The next day, I suppose after they consulted their lawyers, and after I had my plan to kill myself re-embedded in my head - they called to give me my job back. Interesting. Lovely way to treat your staff.

So anyway, I am in the middle of a job search, and finding a part time job which will not pay too much, so that I do not lose disability benefits I desperately need, is difficult.

Further, Social Security, once again, is putting me through the tremendous hassle of trying to prove to them that, yes, I am, indeed "disabled" and that I do, indeed, qualify for the stupid benefits they are supposed to be giving me. They do this to everyone. Like regularly. They seem to exist solely to torture people more than to help people. So I am dealing with that, without much help from anyone.

Additionally, due to the fact that the man who lives in the apartment below me has been terrorized me for all the months that he has lived there, and he has a huge criminal record, and I have had to call the police on him, and the landlord agency will not get him out of there, as well as due to the fact that I'm losing my job, now I have to move.

The only place I have to move to that is available and affordable for me is an apartment in this town I dislike, in another unpleasant neighborhood. But it is better than becoming homeless again.

So I have to move.

There are three big stressors in life, according to The Experts: Moving, Changing Jobs, and something else I don't remember (watch whatever it is occur tomorrow!!).

So I am going through a lot of stress. And that is enough to say about that.

COPING SKILLS

These are things I am doing to help myself:

Until my blender broke this morning I was drinking green smoothies almost every day. Green smoothies are very healthy. They are full of nutrition, and they can make a good meal replacement. Especially if you hate cooking! I use spinach, kale, or other "power greens", which you can purchase at any grocery store or produce stand in the U.S. (I obviously do not know about the vegetables for sale in the rest of the world, sorry), and I add almond milk, or yogurt, then frozen fruit, and sometimes flax and/or peanut butter. They are very tasty! It's like a healthy dessert. I've been doing this since August, and I've come to really enjoy it. It's unfortunate I have to save up now to buy a new blender, but that's okay. You don't need a really expensive blender to make green smoothies.

I drink green tea every day. I make a pitcher of it, and I use Stevia to sweeten it. There is a product you can get at Walmart (I know Walmart is the Evil Enemy, but sometimes it is necessary in a pinch), called "Pure Vita", and it is organic. Instead of the Diet Pepsi and Diet Coke I lived on for most of my life, with such a huge habit everybody whoever knew me commented on how bizarre it was the amount of diet soda I consumed, now I drink green tea instead, or cold, filtered water. I bought a filter for my sink, it gets the bad stuff out and makes the water taste better. I attached it to the sink myself, and actually it was quite easy.

I don't eat fast food anymore or frozen dinners. Can't afford it and it's not healthy. I go to food pantries, out of necessity. I eat a lot of what I get there supplemented by the occasional purchase of cereal or potatoes, or something like that.

I've lost 22 pounds so far since August, and kept it off for a while now. So that is good, because I am overweight and prediabetic.

This week I started exercising again - walking, and doing some stretches. I do stretches regularly, actually, for the heinous Fibromyalgia pain in my neck and shoulders, but I had not done any kind of aerobic exercise in ages and ages. So twice now, I've gone for good, long walks through a local park which you can walk to from my apartment. It's a lovely park, a great place to take in the beauty of nature, see fish jumping in the lake, and birds all about. I do deep breathing and focus on the walking and the stretches and try to shut up the voice in my head telling me what a horrible, stupid, disgusting person I am. "Shut up! Shut up! Shut up!", I say. I even sat on the kids' tire swing the other day and swung around. No children were there. It was kind of fun! I definitely recommend spending time in nature to refresh your body and your mind.

My rheumatologist says that the way I am writing down all my medical symptoms and questions and reading them to her indicates that I am really trying to heal myself now and I am getting more organized. She said I am actually helping her be more organized in her efforts to help me. Of course, mostly she can only prescribe more pills, and I am on way too many pills, but she's kind, and patient, and I like her.

My therapist said she sees me on a healing journey, too.

I've been doing writing, journaling at home. My laptop doesn't have any software like Word on it to be able to write with. So I just use the old paper and pen variety.

I barely ever watch TV. I don't miss it. I don't miss having cable either, except when I would like to see the election results on MSNBC. When Hillary runs for President I'm going to have to invest in cable again, I guess! Or, at least, internet at home.

When I've got no one to talk to - which is usually the case - I always have had the habit of talking to my cats. They enjoy it. Ribbit actually tries to converse with me. He meows, I respond, and he meows some more. I ask him how his day went, if he played much, terrorized Spooky a lot like he enjoys doing, and made enough noise to irritate the maniac downstairs who likes to bang on the wall and scream that he's going to call the cops when my 11-pound cats are making noise. I read poetry to my cats. If you talk to pets in a friendly tone (well I don't know much about dogs as I don't like dogs much, but this is true of cats), whatever you're saying doesn't really matter, they just like to hear your voice. It calms them, makes them purr, makes them happy, makes them sit with your lie on you. My cats always do that. They greet me at the door when I come home and they hear the key in the lock. Ribbit is generally by my side at all times. When I'm not feeling well, they lie on my body right where it hurts, which, actually, make it hurt more, but that's not their intention. They're very intuitive, intelligent cats. And they never got tired of their Mommy, like most people probably would if they had to be around me all the time!

Another thing I do that is helpful is see a chiropractor twice a week. He's not a full-fledged chiropractor, as he's really an intern who I see for free because I work for the college, but he's very good at his job. This has been helping me with my pain in my neck, shoulders, and back quite a bit. I think, more and more, that it's better to utilize alternative therapies for chronic illnesses than to simply rely on allopathic medicine, which basically involves me swallowing 30 pills a day and not really feeling any benefit from that.

I take a multivitamin, B12, B Complex Gummies (gummy or sublingual vitamins are better to digest than the kind you just swallow), Fish Oil, and sometimes magnesium with malic acid, and sometimes Vitamin C. I'm going to try to get off some of my medications really soon. Like, perhaps, tomorrow. Not the mental health stuff, but some of the other things for my stomach and for Fibro, which I just don't want to be swallowing all the time without knowing that they even help at all.

So, what I'm trying to say here is that there are various ways to help yourself. I'm trying to find the calm within the storm. When I walk to the park, I walk onto this deck which goes over the lake, and I take a moment to look around and take in the beauty there. It reminds me of when I was in the hospital this past July and August, and I would walk around outside in the little, enclosed courtyard, and there was this one guy who would just sit at a  table and stare at an American flag in the distance. He had been in the military and he said that this reminded him of the freedom he currently lacked. He called it his "Serenity Spot". So I was thinking, you know, we all need some kind of "serenity spot", or some place, some thing that makes us feel more calm, maybe, multiple things, maybe it takes tons of work to cope, maybe it's like a full time job. But you have to do it because nobody can do it for you.

Also, people have been pre-ordering copies of the book I co-authored with Jessica Leach, Episodes of Schizophrenia, so I have been able to purchase some copies to be sent in the mail. You can still order the Ebook online if you like. But soon, when I can get more copies, I'll be putting up a way for you to by signed copies from me, via this website, using Paypal. So do come back, please, if you are interested in that!

And, if you don't mind, please take the poll on the right hand column of this blog, about what topics you would like to read about in future blog posts and/or a future book. Thank you!

Lastly, some people have emailed me at jen.evolving@gmail.com, an email account I do not often check, because they wanted to contact me and were not comfortable leaving comments. I have enabled the ability for you to leave anonymous comments, all of which will be reviewed first to prevent spam, so you do not have to worry about having a gmail/blogger account to leave a comment now. And I really, really appreciate it when someone takes the time to leave a comment or email me! I apologize if your emails take a while for me to respond to.

Monday, November 03, 2014

Reasons People with Chronic Physical and Psychiatric Disorders Avoid Emergency Rooms

Things you will learn if you live with chronic illness (particularly a combination of physical and mental illness - even though mental is also physical, caused by the brain, though most people don't know that), and more particularly if you are a woman and the physical illnesses you have are autoimmune in nature and primarily occur in women (all of this is learned from MUCH experience):


  1. Never go to an emergency room. If you need to go into an ER, do not expect to get any actual help. Emergency rooms are only the place you should go if you lack health insurance and/or are homeless.
  2. In the ER, once the doctor hears the first 5 words out of your mouth, you should expect to be treated like the following:
      1. a chronic, malingering complainer
      2. a person with nothing physically wrong who has only gone to the ER for her personal pleasure
      3. a person who is "only" mentally ill, not physically ill, and who, if any help is needed at all, needs to be Baker Acted (ie, committed to a psych ward/hospital)
      4. an imbecile (expect this especially if you are more knowledgeable than the ER doctors are about your conditions, as of course, if you have suffered for years you probably will know more about your illnesses than the average ER doctor - even the average any kind of doctor - because most likely you will have searched for answers and done more research than he has).
      5. a woman who is, as termed in the 19th century, "hysterical", ie: you are simply another crazy chick who enjoys complaining about imaginary ailments and you are totally wasting the time of the doctors and nurses and the rest of the ER staff, so you just need to be sent home ASAP where you can lie in bed like they assume you do all of the time
  3. If you are overweight, expect to be told that if you were not a lazy, fat pig (in other terms which cannot be used for lawsuits), then you would not have any health problems. (If you spent 10 years living with Anorexia and started getting seriously physically sick when you weighed 90 pounds, this might be especially offensive to you.)
  4. Never say anything obviously logical, such as, "I need fluids", especially if you know you have a physical illness like Dysautonomia (Chronic Orthostatic Hypotension or Postural Orthostatic Tachycardia Syndrome), which is helped by saline fluids, because after you say this you will then be labeled as an egomaniacal nut job who thinks she knows more than the hospital staff when she is really just an imbecile.
  5. Never go to the ER alone. Do not go in an ambulance unless you are unconscious. Do not ever drive yourself or take a cab to the ER (even if this is your only mode of transportation). Do not ever have someone drop you off at the ER and DO NOT walk into the ER. Unless someone brings you, has to push you in a wheelchair to get to the door because you are too weak to walk, and stays with you through the entire ordeal, and helps you explain that you are not a hypochondriac, then you will simply end up vowing to never, ever go to an ER again and you will quickly come to despise the entire medical profession.
  6. Do not expect any answers or any help at the ER. If you are not bleeding profusely, or vomiting up obvious blood, and you have no broken limbs, you will get no help from the ER. The ER is not set up to help anybody who suffers from any chronic illness, particularly an "invisible illness", and also particularly a mental illness.
  7. Expect to be repeatedly told the following:
      1. "It's all in your head".
      2. "There is nothing wrong with you."
      3. "You are fine." (ie, your EKG just showed you are not having a heart attack, therefore chest pain means nothing).
      4. "You need to see a primary care doctor." (ie, "stop wasting our time, and get the hell out of here"), even if you do not have a primary care doctor, perhaps because you have no health insurance, or perhaps because you learned long ago from experiences like this to hate doctors). Further, they will tell you to see a primary care doctor, even if your "primary care doctor" is the person who told you, against your wishes, to go to the ER (this is what happened to me a few days ago).
  8. Do not even mention certain conditions such as:
      1. Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome (known in Europe as M.E.)
      2. Fibromyalgia (ie, Crazy Women's Disease)
      3. Sjogren's Syndrome (expect to have to spell it, define it, and then be treated like a lunatic hypochondriac because YOU KNOW HOW to spell it and define it, and the doctors and nurses have never heard of it before)
      4. Your mental illness (if you have both physical and mental ones), for which you will be told that you have no physical ailments and you should try taking your meds (even if you have diligently taken your meds for many years every day), and if you are not suicidal with a plan, your mental illness is no reason to go to the ER because you will get no help there.
  9. Expect to be treated like you are stupid, even if, all of your life, anyone who really knew you told you that you were highly intelligent.
  10. You will be sent home feeling worse than when you went in, because of the traumatic nature of the emotional abuse inflicted by the ER staff and the incredible frustration of going through this situation 100 times.
  11. If you are on Medicare and/or Medicaid, expect to be treated like a lazy parasite feeding off the government, sucking blood from the veins of the wealthy, elitist, healthy population, and don't bother explaining how you try very hard to be active, how you work part time, how you go to college when you can, how you volunteer for an organization like NAMI (National Alliance on Mental Illness) to educate the public, how you spend more time worrying about others and taking care of others than you do worrying about taking care of yourself, how you HATE having to be in bed and rest, etc., etc., etc., etc., etc.)
  12. Don't bring anybody you may have in your possibly extremely dysfunctional family with you (or any friends who think you are a hypochondriac because they have not walked in your shoes and do not know your whole history and have no idea what you are going through), because what these people say to the staff will be what is believed, and what you say will not.
  13. If you do not force yourself somehow to be pleasant and friendly to the staff, despite whatever symptoms you are having (like heinous pain), then expect to be treated even worse for seeming rude.
  14. In contrast to number 13, if you do smile and be pleasant to the staff, this will seal the deal on their hypothesis (with no evidence or proof), that there is nothing wrong with you.
  15. In summary, never go to the ER if you are conscious.
Note, I'd love for people with chronic conditions, whether they be "physical" or "mental" or both, to pass this around. Share it on your blogs if you like. Copy it onto Facebook groups if you like. I do not mind at all, please go ahead. Just share the link to where you found it.

Note, if you have EVER gone to an Emergency Room for a mental health issue, the National Alliance on Mental Illness happened to send me a link to this survey they are conducting a few days ago. It is a survey about how people with psychiatric conditions are treated in Emergency Departments. They need you to complete it by November 5th (today is November 3rd). PLEASE fill it out. NAMI will use your information confidentially and it will help them decide on future work that might help educate ER staff members. Okay? It will only take about 5 minutes to complete. Here is the link:
https://www.surveymonkey.com/s/G5QCPP9

On a personal note, I have been going through so much physical and mental chaos it is rather ridiculous, and it is mostly physical. I have been through a colonoscopy and endoscopy a few weeks ago that I mentioned before, and the results of that were normal, which means yay, I do not have colon cancer, yet I do not know what is causing my abdominal pain that is ongoing now for a couple months.

Additionally, I have been ongoing heinous pelvic and low  back pain, which has been checked by (oh joy!) ultrasounds that involve invasion of one's body parts, and then led to finding out I had a 4 centimeter cyst on one of my ovaries. When the doctor's office called to tell me this, they said "You have a mass on one of your ovaries and you have a thickening of the lining on the uterus wall". What do you think I thought that meant? I thought cancer. I got so convinced I had cancer, especially after reading about Ovarian Cancer and Endometrial and Uterine Cancer, I was totally terrified. So, my friend Judy from NAMI went with me for this test called a saline ultrasound with endometrial biopsy. I walked in there, having taken Tylenol, Mobic (an non-steroidal anti-inflammatory drug), Naproxen (another non-steroidal anti-inflammatory drug which used to be prescribed for me and which I took regardless of the fact I'm off it now because of the pain), and Ultram (painkiller, non-narcotic). I was still in so much pain despite this that they were not sure they should do the test. I said, please go ahead and do this test. So they did. I was told it might hurt. Ha. It was the most excruciating pain I have experienced in years. I screamed, "OH MY GOD!" over and over. But thankfully, Judy talked to the gyn, so that she did not dismiss me as a hypochondriac, so that she understood I needed to be listened to and taken very seriously, so that she did not talk to me like I was stupid, and so that she would give me five minutes of her time.

So, what happened was, I was put in an exam room to lie down on the table, because I've also been weak, feeling faint, lightheaded and dizzy lately, and after that test I almost passed out. I lied down on the table and finally the doctor came in to talk with me. She said uterine cancers are rare and advised me that surgery was probably not a good idea because "It's only something we would considering doing if you were in extreme, ongoing agony." I said, "Excuse me, but I AM in extreme, ongoing agony". So she asked me if I wanted surgery. I agreed to think about it for a week. I was put on antibiotics in case this whole mess is somehow the result of a bladder infection that didn't show up on the urine tests, and given some stupid narcotic pain killers that I only take in times of absolute desperation for relief.

Tomorrow I go back for the follow up. I will find out the results of the biopsy (keep your fingers crossed, please). I will talk to the doctor about surgery or the option of just going back on birth control as I used to for Endometriosis.

I wish to never see a doctor again in my entire life. I would certainly love to flush my 20 prescriptions down the toilet and be rid of them all.

My Rheumatologist is, as usual, the only MD I trust. I went to her a couple weeks ago. She looked at me and said, "You seem to be having trouble breathing." I was. I talked to her about thyroid issues, and she sent me for a ton of bloodwork and a thyroid ultrasound. I see her again Thursday.

I really wish, I really wish, I really wish, I could just not have to deal with medical crap anymore. It gets so old, and of course, you get really sick and tired of being sick and tired. Particularly you get this way when you have really no one in your life but one friend (thanks Lauren) who understands.

Right now the only medical person I like going to is my chiropractic intern who I see for free! Insurance won't cover it, but as I (*for now) work at a college associated with his chiropractic university, I go there for free. When I can, I go twice a week. He is studying the internal medicine aspect of chiropractic medicine, and he discusses with me things like vitamins, diet, the good and bad bacteria in the gut, etc. I get this light therapy and this therapy called IFC which is like a stem machine, where they put electrodes on the areas that hurt (my neck and shoulders) and zap the pain away. It works quite well. I'd go there and get that done for the rest of my life if it meant I could go off my meds. But of course, I am not going off all the meds, obviously after being floridly psychotic and frequently homeless in the past,  going off the psych meds would be unwise. As far as the Lupus and Sjogren's and thyroid meds, I'm not sure what's wise or unwise anymore. All I know is I'm sick and tired of being sick and tired. Thanks for listening.

On a more positive note, the day of my biopsy I managed to go to the university I attend to speak with Dr. Allen's social work class. She is one of my all time professors and I took all of her social work courses, except one which I had already taken before, that are needed for my degree. Her students listened intently to my story, so it was a rewarding experience. I'm not sure how much of a difference in made in their understanding of mental illness, but I truly hope it was useful to them.

Additionally, I've begun to sell pre-ordered copies of the book Jessica Leach and I co-authored, Episodes of Schizophrenia. I will soon have Paypal set up on this blog so if you would like a signed copy, you can buy one from me here. Further, Lime Hawk Literary Arts Collective is including an essay I wrote on living with Schizoaffective Disorder in their upcoming anthology on mental illness, to be released in Spring, 2015. So I'm excited about that.

Also, I've made a couple changes to the blog. The labels are back up on the right-hand side so you can see what topics are posted on most, and click on the topic that interests you. This is not perfect, but it is meant to help people find what they are looking for.

PLEASE do me a favor, if you have a second and take the poll on the upper right-hand side of the blog, about what topics most interest you, so that I can use your opinions for future posts here as well as a future book. Thank you so much!

Saturday, October 25, 2014

scary medical stuff, could really use your support

Hi folks,

I'm scared and have few places to vent, so here goes:

I've been dealing with chronic illnesses since I was 19 years old and they started all the tests and the diagnosing of nothing but Fibromyalgia and Chronic Fatigue Syndrome and Irritable Bowel Syndrome. I quickly learned what the phrase "you don't look sick" meant, and I learned quickly about being dismissed and told "it's all in your head; here's another antidepressant".

20 years later I despise the entire medical profession for all the goddamn pills I've been put on over the past 20 years that probably caused me more problems than they solved. The only person I like to see right now is this chiropractic intern who sits and patiently talks to me about my pain and health problems and doesn't treat me like a professional patient/hypochondriac/self-pitying fat person/lazy bum/just another psych patient. The only doctor I like is my rheumatologist who, thankfully, takes me seriously.

Two days ago I saw her and she saw, by looking at me, because it's pretty goddamn obvious at this point, that I was really really sick. I started reading off my list of symptoms and she sent me for a chest x-ray, because I'm short of breath, and a thyroid ultrasound because my thyroid seemed out of wack. But then I had to go, again, to this gynecologist I despise because I overheard her call me a "Very High Maintenance" patient and the nurses were laughing about it, and I wasn't hallucinating this, this actually happened. So she comes into the room and asks me what's going on and I said, "I don't want to go into it since you're just going to tell me I'm a high maintenance patient". I was there for a pelvic ultrasound because I went in a few weeks ago wanting a pap smear as I felt really sick and was kind of scared that my precervical cancer issue had turned up again and I was having really bad abdominal pain, and also I got my period twice within three weeks, so I assumed that I was having a flare up of endometriosis again or a problem with ovarian cysts again. So she had me go through this transvaginal ultrasound which is not a hell of a lot of fun (I've had them before), especially if you have issues of a traumatic nature. I figured they'd call me, and, per usual, I would here "there's nothing really wrong".

But that's not what happened. They called me yesterday and said I had a large "fluid filled and solid mass" on my ovaries, or maybe the woman said one of the ovaries, I'm not sure. And also I have "a thickened wall of the uterus". So I have to get a bloodtest which is used to diagnose ovarian cancer tomorrow morning. And I have to get something called a saline ultrasound and endometrial biopsy on Friday, unless they'll do it sooner if I call them tomorrow and beg them to do it sooner because I feel extremely, extremely sick.

I can deal with the chronic shit. I cannot deal with cancer. I do not want to die. I do not want to die before I write the book I've wanted to write all my life. I do not want to die before I finish my B.A. and find a meaningful job. I do not want to die right now. I keep telling myself "You're not going to die" and a line from a poem by Tennyson that my friend who is a poet who overcame cancer has tattooed on his arm, and the last line of that is "not to yield". I keep telling myself a phrase he told me from a movie once, hard to explain right now but it's "kill the bear". I keep telling myself, "I'm going to be okay". But it's hard to believe that it's going to be okay when you feel so weak and lightheaded and in you're in severe pain and you don't really no why.

I'm scared.

If you have some positive thoughts or want to leave a comment, I could really use your support.

Thank you for reading this. Writing is really my only outlet. I need to see my therapist badly but they had to cancel my last appointment.

On top of everything else, I found out Monday that my job is ending in January, and I found out a couple days ago that Social Security is trying, again, to say I make too much money and I'm not disabled anymore and they want to cancel my benefits. So feeling too sick to do much other than be lying down a lot of the time, I get to deal with that bullshit. I really can't take much more stress.

I'm really sick and tired of being sick and tired.

Sorry for rambling.

Take care.

 

Wednesday, October 22, 2014

Autoimmune conditions and Mental Health (and a lot of junk going on with me)

So I'm going to be brief, because I'm using a library computer and have 12 minutes left.

Here is what is going on -

I'm severely weak, and exhausted
I'm in severe abdominal pain that has been ongoing for like two months
I had an endoscopy and a colonoscopy last Friday (today is Wed.), and they took out samples to examine but basically told me I just have internal hemorrhoids which led to blood in the stool, though apparently the doctor is unsure until the labwork comes back
I'm quite sure my endometriosis is flaring up, so tomorrow, I get to go back for a second visit in the past two weeks to the gynecologist for a pelvic ultrasound, which is ever so wonderful since this and the pap smear are costing me $50 which I do not have.
My Lupus or my hypothyroidism have gone insane on me - and I hate to use the word "insane", but I have no idea how else to describe it
Fibromyalgia badly flaring up

I'm cold all the time except when I start feeling burning hot pain
My extremities and my face are numb and tingly (I was diagnosed with Peripheral Neuropathy in one leg in 2006 at the Mayo Clinic in Jacksonville, but it's always affected both legs, both feet, both arms, and both hands, and now it's affecting all of that much worse than usual along with affecting my face which started up a few months ago)

I'm, as usual, incessantly thirsty, and for the first time I started thinking that perhaps I have had diabetes for years because nobody drinks as much fluid as I do. All my family and friends have always made comments like "you need an I.V. of Diet Coke in your arm", or "I've never seen anyone go through 13 glasses of iced tea at dinner", etc. This has been on going for like 20 years. I now only drink water and green iced tea, so it's not a soda thing)

I believe my chronic orthostatic hypotension is back, but nobody takes dysautonomia seriously, and actually most people have never heard of it, so if you have low blood pressure they say "GREAT FOR YOU!" even when you feel like you're about to pass out. I used to take meds for it - Florinef and Midodrine- but went off them after insulting doctors told my Tilt Table test was normal so I didn't have it anymore or whatever - I despise doctors, okay, because they treat people with chronic invisible disabilities like total garbage AND that gets compounded even more when they find out you're on psych meds so they can just dismiss you as a psychosomatic hypochondriac who has nothing wrong with her (and the HER is important, because men rarely get most of the autoimmune conditions like women do, another reason why there's so much discrimination by male doctors - the world is incredibly sexist, despite the feminist movement)
I'm in severe, severe, severe pain in my neck and shoulders and going to the chiropractic intern I see for free twice a week has stopped helping
I'm losing some of my hair whenever I wash it or brush it - more than usual - which is a sign of low thyroid (and I've already been on Synthroid and Cytomel, at very low dosages, for years), and it's also a sign of Lupus (and I'm on Plaquenil for Lupus)
The dryness of my mouth and eyes is worse (from the Sjogren's Syndrome I've had diagnosed since 1999 and is bad), and I already take Pilocarpine for that twice a day and constantly carry water with me.
I have severely dry skin, despite using lotion every day for severely dry skin
I have dry hair, despite using good conditioner every time I wash my hair
I have zero energy
I have lost my appetite most of the time (which I'm not complaining about because everybody on earth thinks I'm a fat pig who needs to lose weight as if I did not already know this, being someone who almost died of anorexia nervosa at age 17)
I'm irritable (can you tell?) and angry and pissed off and I want to freakin' punch a wall down - all of which is very unusual for me and perhaps a hormonal problem
I got my period, then a week and a half later had bleeding again, which is a sign of the endometriosis, which I had surgery for in 2005, being back, but as I was psychotic in 2005 I don't recall what the hell the doctor said about the results of the surgery nor do I really care right now, I just want to feel better.
When I was doing the "prep" for the colonoscopy, blood clots or some kind of round, bright red mass came out twice. and yes, maybe it was just hemorrhoids but it also coincides with feeling like I am dying, so I apologize if you are already thinking I'm just a hypochondriac
I cannot remember anything at all, this has been ongoing for months, maybe longer, I don't really know, I've had cognitive problems forever, it's just that the memory is worse now than usual


What I am getting at is, the autoimmune diseases, of which I have two and possibly more than two, are connected to Schizophrenia, Schizoaffective Disorder, and Bipolar Disorder. There are reasons why I know this. #1 I read when I can, #2 I talked to a researcher about it at a NAMI state conference in 2012 and she told me that this is a huge area of research right now and that these conditions typically run in families together, #3 I know a lot of people I've met in person or online who have autoimmune diseases right along with serious mental illnesses #4 The first thing any doctor ever tells you is wrong when you complain of things that sound psychosomatic is "depression", but often IT IS MORE THAN DEPRESSION #5 Autoimmune diseases and mental illness run in my family on both sides of my family

So this is an area where I will do more research and write about more when I'm feeling better. It's an area that people need to talk about more. When I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome 20 years ago, I learned instantly that people are always told "it's all in your head", when it is not "all in your head". Unfortunately, for some of us, it IS ALSO IN YOUR BRAIN/HEAD and it is STILL physical and REAL. So imagine how much discrimination you get to deal with by the medical profession when you tell them you're on 15 medications and some of them are psychotropic drugs and some of them are for Fibromyalgia and some of them are for Lupus and for Sjogren's Syndrome, and compound that with being obese because antipsychotic medications caused you to gain 100 pounds in two years - imagine how you get treated. Let me tell you. You get treated like total shit, in no uncertain terms. I am so tired of this, I refused to see a general practitioner and still refuse unless I have something like Bronchitis which these morons think is a serious condition while the stuff that is debilitating is stuff they know nothing about. I only trust my Rheumatologist, as she has been seeing me fore seven or eight years, and she takes me seriously. She knows I'm not a hypochondriac. So I'm glad I'll be seeing her tomorrow.

I'm also glad I'm seeing my therapist tomorrow, because I really need to talk to someone right now.

On top of the above, here is what is going on:

-My downstairs neighbor is a maniacal jackass with a huge criminal record that includes being charged with things like "domestic battery" and "false imprisonment" of someone, along with trafficking in cocaine and GHB. He bangs on my wall every day, while I am walking around in bare feet, and he screams at me, calling me "Thumpety Thump" and screams "STOP BANGING". I learned from a staff member that this guy has been banned from the office at the building because he screamed at the staff one day that he was going to "kick their asses" and he also "terrorized" his former roommate until the guy moved out. Then this jerk got moved below me. And this is what I get to deal with every day, afraid of hearing the banging if I do anything other than breathe. So, fed up, in agony physically, and exasperated at the landlord agency doing nothing about this situation, on Saturday I called the police. I had no other choice. I am afraid of this maniac. The officer told me to keep my door locked. Like I didn't already do that? He said he would go and talk to the guy and tell him to cut it out, and that if the guy ever banged on my door again (like he did once), to not open the door and to "call the police immediately". My adopted NAMI family friends -two of them - came to help me talk to the officer and they asked him if he was familiar with C.I.T. (Crisis Intervention Team Training). It turned out that he was trained in C.I.T. 8 or 9 years ago. So my friend told him "Jennifer teaches C.I.T.", and I think that this made him take me more seriously unlike the idiot on the dispatch line (I did not call 911, I called the "non-emergency" number, and they transferred me to this dispatch woman), who said to me, "Making too much noise is not something the police are going to come out there for just because you can't get along with your neighbor and you think he's noisy." I said, no, this is not an issue of me not getting along with my neighbor, I have lived here for eight years, I get along with everyone, and this is an issue of someone who is an ex convict HARRASSING me and terrorizing me.

So, anyway, the landlord agency has offered me an apartment in another crappy neighborhood which I can't deal with right now because when you feel this sick and you're under this much stress, you do not exactly want to pack up your home and move, particularly to somewhere that you don't even want to live at, just to get away from an asshole.

I feel it is incredibly unfair that this guy is not being asked to move. It's freakin' ridiculous that he still lives in our building.

On top of these things, on Monday, as soon as I got to work, my boss took me aside because I had been out on Friday for the colonoscopy and endoscopy so I had missed the meeting that my coworkers went to. The news from the meeting was just fabulous: we are all losing our jobs in January. The college is closing down its call center and outsourcing it to somewhere that is supposedly better than the one where I have worked for the past six years. So on top of everything else, I am now searching for a new job.

Also, yesterday my grandmother, who is 86 years old was put in the hospital with cardiac problems. She had a quintuple bypass years ago. I am worried about her.

So I'm a little stressed out right now.

I'm sorry this post is so long. I really just needed to vent, and I apologize if you don't like reading a litany of problems like this.

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