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.

Tuesday, October 14, 2014

Craft projects - tell me what you think of this one

My last post was a bit of a downer. I've been having a lot of health issues, but I don't want to write a lot about that right now. I think about it enough already. I will say that the following issues are being addressed:

-abdominal pain (I've had endometriosis forever but I have been free of that pain most of the time for a few years); getting a pelvic ultrasound in a couple weeks (I've had ovarian cyst issues before and it was thought by a gyn I went to years ago that I had PCOS - polycystic ovaries - which would explain some of my weight issues)

-cold all the time (thyroid? this started in July when I was in the hospital, I don't know if it's related to chronic issues or new meds......it's so hard to tell, but I used to get hot a lot as, after all, I'm overweight and I live in Florida, but now, I carry sweaters with me everywhere and frequently have the air conditioning turned off)

-hair falling out and being more dry than usual (Lupus? Maybe I just need a haircut!)

-fatigue (but not really much worse than usual; I've had fatigue forever - CFS, Fibromyalgia, then diagnosed with Sjogren's, then diagnosed with Lupus and Sjogren's along with the Fibro)

-insomnia (my lifelong battle against this never ends and I will probably never know why)

-feeling weak and shaky (blood sugar? I have prediabetes)

-pain in neck and shoulders (but this is not worse than usual and I see a chiropractor intern twice a week for free because the college I work for is associated with his chiropractic college, and this helps a lot! I get laser treatment and this electronic machine called IFC which is like a stem machine, not sure exactly how to explain it but this has always helped me, forever, as I used  to go on and off to physical therapy for years and they did that machine there too on my trigger points. They also did massage at the PT place when I went, but I stopped going because Medicare limits the amount of PT you can get a lot. Chiro does adjustments on my neck, and my back which actually helps even though it used to terrify me)

-lack of appetite (this is not a problem in my opinion but it exists, which is odd, possibly due to my newest antipsychotic, Saphris, which I love)

-I can't remember the rest. I can't remember anything anymore.

Also, mild auditory hallucinations have returned, so I might have to go back to the secondary antipsychotic, Trilafon, in addition to the Saphris, but I'm trying to stick it out and avoid that as I get akathesia worse from being on two antipsychotics at once. Home health nurse told me weeks ago to go back on it, but she doesn't come anymore; that was a temporary thing, and I didn't really want to be on it.


Anyway, on to the positive things!

I started doing my own art therapy after I got out of the hospital in August. I had no TV, and I found that this gave me extra time to be creative. Now, I do have some TV because I have this cool antennae my friend gave me that her husband mounted on my wall for me and it gets lots of channels (for free, no cable!), however, I don't watch a lot of TV even though I have it.

The first project I made was for my sister. It was a composition book, decorated, full of positive words cut out of magazines to increase her self esteem and help her depression. I doubt she read all of it, but I enjoyed making it for her. It took forever - like two weeks - to fill up the entire book. But it was easy to do, and it gave me something to do in the middle of the night when I couldn't sleep.

The second project I made was for me, a journal book full of helpful quotes. I cut up a book I had of meditations by an organization called Messies Anonymous. I cut pages I liked out of some Al-Anon books I have, and an old book of meditations for women I have. I cut out stuff from SARK books which I love. And then I got the rest of the quotes, which I wrote in colored pens, from an old book of quotes by women I've had forever, and an old desk calendar of quotes by women. I decorated it with really cool and pretty stickers I picked up at Michael's art/craft store, Dollar Tree, and Walmart (I hate Walmart but sometimes it's useful). I showed it to my therapist and she adored it! She said she'd love a copy for herself. So then I got this idea in my head that I was going to make these and give them to people, or even  sell them. I bought some scrapbooks from Goodwill's thrift shop for about $2.50 each and planned on filling them up. I just haven't gotten the time to start on that yet. It's going to be a lot of work and it's kind of complicated because I don't have Microsoft Word on my laptop, and my laptop is having issues right now. Also, I don't own a printer. So haven't gotten to that project yet.

The third thing I made was a plaque for my brother with his version of the Serenity Prayer on it, "Dude, Grant me the serenity to accept the shit I cannot change, the courage to change the shit I can, and the wisdom to know the difference". He loved it! I got the plaque from Michael's, painted it, and used stick on letters. Also added some Winnie the Pooh stickers (reminds me of the Tao of Pooh and my brother likes Winnie the Pooh). I wish I had a picture of it to show you.

The next thing I made was a plaque for myself. I need to take a picture of it and post it here. It's painted yellow, and says "Daisybee" on it. It's decorated with stickers of daisies and bees! I love it. It's for my bedroom.

Then I thought about starting an Etsy shop. A nurse in the hospital suggested that if I like doing crafty stuff, this would be a way to make some extra money. Now, I'm no professional artist by any means of the imagination, but I do like making things. I have - throughout all my many psych hospital stays over many years - always loved, loved, loved art therapy. I was in a hospital in Virginia around 2000-2003 a couple times where they had this wonderful art therapy program and that is where I learned decoupage. I make boxes every so often and give them to people. I did it last year for Christmas for a bunch of people. It's fun and I enjoy it. I paint the boxes, decorate them with various things like words from magazines, stickers of letters, tissue paper, pictures from magazines, etc. And people like them. Years ago when my mental health housing agency held an art fair for clients to sell their artwork, I made some and sold them. One person paid me $20 for hers.

So, I went and bought some discounted art supplies. I started by making plaques. I have only gotten far enough to make two so far. One I am going to show you here:

This started out as a plain piece of wood shaped like a Daisy.

Step 1:



Step 2:

Step 3:


I didn't get a pic yet of the final version. I attached red rope with Super Glue to the back, so that it can be hung on a wall. 

After this one, I made one that is shaped like a heart, and says "Today I Choose To Love Myself". It's painted red, and has heart and caterpillar and butterfly stickers.

I'll have to get more pictures to show you.

I have made these last two specifically with the idea of someone buying them. Does anyone think anyone would?

I also have a few other ideas of things I'd like to make. Dream Boxes are one of them. I have decorated boxes before with little shapes of daisies on which I wrote my reasons to live. During my most recent hospital stay in July and August I made an envelope full of daisies shaped with reasons to live, hearts shaped with people who care about or love me, and butterflies shaped with ways I have transformed myself, since caterpillars transform into butterflies. I showed this to people and they really liked it so I was thinking of making boxes with shaped paper like that for other people to write down their own reasons to live, and people who love them, and ways they've changed/improved their lives. Also was going to include something like maybe cloud-shaped blue papers or index cards where they could write their dreams and hopes for the future. I would put instructions and glue them to the inside of the box. Would this interest anyone? Just let me know if it would. Thanks!

The night I made the above-pictured plaque was right before I woke up horrendously sick in the middle of the night, so I haven't made much lately because of all the health problems I've been dealing with along with my cats' health problems (I recently got a grant from an agency to take my cats to a vet and they both have bad ear infections requiring treatments three times a day which is a hell of a lot of fun, dear god, it's awful), and other stuff, so......But I'm going to get back to making things again soon.

If I do open an Etsy shop, I think it's going to be called Daisybee's Inspiration Station. 


Sunday, October 12, 2014

Health Issues

I can't type much right now, because I'm not feeling well.

I'm having a lot of health problems these days.

I'm also having problems with a neighbor who is harassing me and making me consider moving into another apartment building, but that apartment building is in a neighborhood just as bad as the one I live in now, and I've got no desire to go there. It's also all I can afford, please do not suggest that I keep looking,, as I already know how to do that.

Health problems may all be related to thyroid and endometriosis. I'm extremely tired, have rashes (Lupus), photosensitive (Lupus), horrendous abdominal pain (unknown cause), no appetite (unknown cause). The endo is an ongoing issue which I haven't received treatment for in years since it wasn't bothering me. I did have surgery for it in 2005 and have been on birth control for it in the past.

Two weeks ago I was in the ER for 7 hours due to profuse diarrhea and vomiting that had gone on for ten hours and caused serious dehydration. It was thought by the ER doc that I had caught a "stomach bug". I no longer believe this was the case as abdominal pain has continued.

Had to go to gastroenterologist (of my own accord because my primary care doc is an idiot and I've only met him twice so he doesn't know me or anything), now have to get colonoscopy partially due to the fact that I had blood in the stool for three days in July while I was in the psych hospital, and partially due to ongoing gastro issues. It has already been suggested to me a million times that I go gluten free, and while this is a consideration it is also something I don't feel capable of managing.

Also went to gynecologist, have to get pelvice ultrasound in a couple weeks, probably go back on birth control pill to control the endo (if that is what is causing this).

Seriously scared that I have some kind of cancer, but that's probably paranoid thinking.

In other news, I attended the NAMI Harvest Festival yesterday although I was in pain the whole time, and it was great. My mom came, a friend of mine came, and I saw lots of other people I know through NAMI. Also, a woman at my mental health housing agency who I recommended receive an Iris Award (awards given yearly to great advocates for people living with mental illnesses), was there, and received the award which she said meant a lot to her. So that was good.

Other things going on are not so good. I've got to stop typing now; not feeling well. Thanks for any encouraging thoughts you have.

Wednesday, October 08, 2014

Why I've been attending a church, even though I don't believe in "God"

After I got out of the hospital, I decided I needed to make more changes to my life, to avoid ending up in the state I was in before. I had visited the Unitarian Universalist center of Clearwater (which is known as UUC) but not referred to as a "church" by everybody, a few times over the years. Once was for an antiwar play, once was when we held a Pinellas National Organization for Women event there and showed a film, and several times I went to the actual Sunday service. Once or twice I also attended the Social Issues meeting they have before the service. Then, in late August after I got out of the hospital, I was invited by my friend to watch his daughter play cello (she is extremely gifted) at the non-church church since he and his wife and daughter all attend there. So I went to that service, and I remembered why I liked it there when I had visited long ago. I felt at home. They read poetry in their services. Once, when I first went a few years back, there was a Marge Piercy poem read, and she is one of my favorite writers, so that got me really excited, that a feminist poet was being quoted in a "church" service! Anyway, when I went back this time in August, I ran into my other favorite professor of all time, from USF, and she happens to be a very involved member there. Like-minded people go to like-minded places.

What I like about the UU non-churchy church is their focus on social justice, and fairness, and equality, and women's rights, and LGBT rights, and the rights of the low-income people of the world and the rights of immigrant farm workers here in Florida. I like that, although I don't care for hymns which include the word "God" or the word "Lord", they are welcoming to atheists, humanists, agnostics, and non-theists! There is no other "church" or "religion" I know of that does not require you to read a certain book or believe in a certain god of any kind. They do incorporate some facets of other religions, such as Judaism, Buddhism, and Christianity, but they never, ever force you to believe in anything such as a particular deity. And I LOVE that!

I also like their musical performances, such as the one they had a few with a drum circle which was really cool. They have a fellowship hall where you can go and have coffee or juice and some snacks and meet people after the service. They even have a little library there, which I discovered carries lots of humanist books, and even some great poetry books! All you have to do is sign them out and bring them back.

This past Sunday when I went I met some of the humanist/atheist people and they told me to make sure to come in a couple weeks because there's a humanist meeting, in the non-churchy church right after the Sunday service once a month! And then they invited me to eat lunch with some folks at a local cafe that is near where I live. So I did that and had interesting conversations the whole time. I felt like I belonged. When I told them about how the words "God" and "Lord" bothered me, one responded by saying, "I just don't say those words", and that was hilarious to me because I had done the same thing. I sing the hymn but not say those words. And that's OK there!

I'm never going to turn into some kind of religious zealot of any kind - not ever, ever, ever -but I do feel like this is a nice social outlet for me where I can meet like-minded people who I have more in common with than just a shared interest in mental health (I love NAMI, but I don't want it to be my only social outlet), and so I plan on going back and even taking a class next month to see if I want to become a member there.

If you're interested in what I like about this "religion" you can see their Seven Principles here.

The only thing I don't like is that there is no specific group working on women's rights or disabilities rights, but I've already talked to someone about how some of the women there want to start a women's rights committee, which sounds like an excellent idea.





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