Thursday, December 29, 2011

A year in review: as 2011 comes to a close

Another year has almost passed. This is always a time of reflection, and a time to look forward to the future, too. I will tell you some good things that happened for me this year.

I moved into a different apartment. At first this was really stressful and actually quite horrible, but then I was happy I had done it because I had a nice, newly cleaned up unit to decorate and stuff. So it's okay.

I finished up my first semester in a Bachelor's program at one college, decided I hated it, and finally made up my mind to try to go to the other university to do what I really want to do, which is in the realm of social work. I applied to that university and got denied admission because of my past withdrawals. I appealed this denial with many letters of recommendation from various people who know me, and a lengthy letter from myself, as well as copious medical documentation of the reasons why I had to withdraw. I won my appeal.

I completed my first semester at the university. Despite a psychotic episode in the early part of the semester, and fearing I'd fail completely, I managed to get through and get A's in both my classes. I was proud of myself for this, because there were times in the past when I would have just given up and this time I purposely did not do that. And I'm glad.

I had changes in medications. I started Latuda. At first I thought it wasn't helping, but then it turned out that 80 mgs works pretty well for me, along with my other meds. I am on a lot of meds, still. I want to get off some, but that hasn't happened yet. I'm hoping for getting off Risperdal Consta injections this coming year.

I tried to keep my apartment clean, didn't always manage to do so, tried so more, sort of managed, but it is always a struggle to keep on top of this. I am still working on it.

I spent a lot of time with my cats, Ribbit and Spooky who I adore, and their company makes me happy and a lot less lonely in the world.

I read a lot of political articles, and kept up with the Occupy protests, and cheered on the protesters even though I wasn't there myself. I was happy to see this social movement for justice and economic human rights take stage on a national level and gain attention from the general public in a real, and tangible way, because we really are the 99%, and the whole world is watching. I was proud of my fellow American activists, and proud also of the activists who put their lives on the line in the Arab spring. Contrary to what this blog may often read like,  I really do not just think about myself and my problems all the time.

I have over 900 Facebook friends, and I know about 20 of them. I spent time with a few friends, mostly just two, and primarily just one. But I also went to advocacy events for NAMI (the National Alliance on Mental Illness), where I continue to volunteer, and with NOW (the National Organization for Women), where I also volunteer. These activities gave me some fulfillment I wouldn't have otherwise had.

I spoke to police officers in one of our bi-yearly C.I.T. trainings for teaching the law enforcement community about mental illness, and I told them my story. I spoke to high school students for the Great American Teach In and told them my story. I hope to continue to tell my story wherever I am asked to do so, whenever it might be helpful, for the rest of my life. I find this a fulfilling way to make a small difference in the world. If I can help one person understand what it is like to live with a serious mental illness every day, then I have done something worthwhile, and I know that in these speaking engagements, each time, at least one person is affected, because they tell me so. This year the high school class wasn't very attentive, but it was early in the morning, and I think they were mostly tired, so that was not a terrible thing.

I went to the memorial service for a fellow NAMI advocate here, who I really liked a lot, and who I miss now, because she was a true angel on earth, a person who gave more than she received, who never complained, who always had a smile on her face and a heart full of compassion for consumers. She was a wonderful woman named Paula. I picked out a frame and put a picture of her in it that was a gift from our consumer council to the man who is a leader in our council who was also Paula's roommate for 12 years and close companion. I was really glad he liked it, and it was important for us to give something in her honor that memorialized her.

I got nervous about veterans moving into my apartment building for temporary housing, some of whom are coming from the streets, and all of whom are men.  I made Christmas cookies and gave them to all of the neighbors, and I hope that we will get along. I realize that their lives are difficult, and I don't necessarily need to be afraid of them, but I struggle with the fear of being one of two women in an apartment building full of men, which was not the way I lived before, in my past five years here. I will figure out how to deal with this.

I exchanged letters and cards with my online friends Kate and Lauren, and emails with my friend and former professor Dr. Byrd, and I had lunch with my friend from NOW, and spent many nights at the movies with Kathy. I am kind of a loner, but not completely. I spent a lot of time with my family.

I saw my sister give my mom a dog (a cute collie puppy) for Christmas, and my mom seemed genuinely happy for the first time in a while.

I tried to advise my brother and my sister in ways I thought would be useful for them, but they never took my advice and generally were resentful of it, so I am learning that I can't always help people, and I have been learning this for a long time. I will continue to learn it.

I got annoyed with my landlords, the U.S. government, my insurance companies, Social Security, my friend, people in general, the public I deal with at work, my coworkers, and people in my classes. A lot of times people do annoy me; I'm human. I dealt with this and generally tried to find the good in people even when they pissed me off, sometimes successfully and sometimes not.

I saw the Clothesline project for domestic violence awareness again this past October, which is Domestic Violence Awareness Month, and it was a beautiful site, which you should definitely check out whenever it is displayed where you live. I have helped set it up before when I lived near Washington and it is a very moving exhibit. I attended a NOW meeting on domestic violence where we had an interesting discussion.

I attended the national NOW conference which included a protest of Marco Rubio, which was very enjoyable.

I spent a lot of time at the community mental health center. I got my shots every two weeks. I miss my nurse who moved away and used to give me the shot every time for years, but is now gone. I saw my psychiatrist usually at least once a month. I saw my therapist sometimes. I saw my case manager and talked to her on the phone regularly. I got help because I need help, and it's very important to get the help that you need and irresponsible and stupid to not get the help that you need when help is available to you. So I got help, I will continue to get help, and I am grateful to have help.

I was psychotic a bit this year. I heard voices. I took more medication, I took notes of my symptoms, I read research on medications, I read books, I talked to my doctor, and I agreed to take a medication I didn't really want which ended up stopping the psychosis for me. I am glad I did these things now. I got through the voices and the paranoia and the delusional thoughts. I told my college professor I had these problems, and I got through her classes better because she understood my struggles and was able to give me some leeway on the dates for a couple of tests. I wouldn't have gotten through this semester if I hadn't been honest even though it was hard and risky to do so. I lived through the psychosis again. I will be able to live through it again if I ever have to, although, I would really, really like to avoid that.

I had difficulties with my physical health which were frustrating because I never get any real answers to them, only more questions. My rheumatologist suggested that I had Lupus, and then saw my blood work and told me I don't have it, but I do have something wrong with my immune system, something not defined. So the questions go on. I may never got concrete answers about my health issues, but I plan on trying to.

[Edited to add this] I went to Baltimore with my mother to visit my grandparents, which was important to do because they are all elderly, and they mean a lot to me, and I don't go to Baltimore often for a lot of reasons, mostly to do with money. I got to see my grandparents, which was good, and I also had lunch with an aunt and uncle - an uncle who had been mad at me for years for things I did when I was psychotic. He apologized that he had been mad at me and said he was glad I told them about my illness. That was a meaningful experience.

I didn't lose weight this year. I need to work on that a lot this next year. I will work on it. I am definitely not perfect in this regard, and it bothers me a lot. But my weight doesn't define me or who I am or what I can do either. For health reasons, however, I need to lose weight. So the struggle continues.

So the struggles all continue. And with the struggles come the overcoming of them, and the accomplishments, the triumphs, the moments of laughter, the good times, the sleep that is always welcome when it finally comes, and life. With the struggles, come life. And life is worth living.

I am glad to be alive. I am glad I lived another year. And I'm glad you did too.


Sunday, December 11, 2011

Lupus and Rheumatoid Arthritis (feeling sick from something forever and not knowing what it is)

I am so annoyed with my body right now. It has caused me so many problems for so many years, I can't even begin to explain the situation in one blog post. I rarely try to explain it to anyone at all, actually, because few people seem to be open-minded or knowledgeable enough to understand things like chronic diseases which are not visible with the naked eye, and the fact that these diseases can destroy a person's ability to function, even when she doesn't "look sick". Suffice to say, I am doing alright mentally now, but not physically. And I haven't really been feeling well physically in months. The situation, over the years, has waxed and waned, where at times I was literally bed-ridden, and at other times, I was feeling okay. But I have basically been physically ill for 15 years.

They told me about 15 years ago that I had Fibromyalgia. Then I read about Chronic Fatigue Syndrome and its connection to Fibromyalgia, and after many tests, which were looking for things like Rheumatoid Arthritis, Multiple Sclerosis and Lupus, I was eventually told I had Chronic Fatigue Syndrome and Dysautonomia in addition to Fibromyalgia. Then, it was also Sjogren's Syndrome. Now, it's not uncommon to have these things together, so that's not the odd part. The odd part is that I have always had symptoms come up that would indicate there was probably something more going on, like an autoimmune disease such as Rheumatoid Arthritis or Lupus. In 2004, I saw a rheumatologist who told me I had RA. I was so psychotic at the time that I didn't do much about this situation then. Years later, living in a different area (the area where I live now), I found another rheumatologist (this is the third or fourth one I've seen), who I've been going to now for about six years. She has been thinking that perhaps I had Lupus, or Mixed Connective Tissue Disease, but she hasn't ever officially diagnosed me with anything other than Sjogren's. She seems to think that the name of what is wrong isn't that important. But, I WANT TO KNOW what the real problem is once and for all, and I've been having problems for enough years with my health to know that there are enough signs to diagnose by now with one of these autoimmune illnesses. I have learned enough over the years about my own self, and about these illnesses, to understand that when I start feeling like I feel right now, likely something is wrong that I do not have a diagnosis for.

My rheumatologist told me two days ago that she had never seen my joints in my hands look like they look right now, over the years that I have known her. I said, "Yes I know, they also never felt like this before now in my life." They hurt. A lot. And so do my elbows, and my feet, and my knees, and my shoulders and my back. I have absolutely no energy. I am back to this state where I have no energy to clean or to do things that I want to do. I don't think I am going to be able to make it to work tomorrow if something doesn't change really fast, because I can barely function. This is not a good situation to be in.

My doctor sent me for blood work again. I can't tell you how many times I've had bloodwork done to check for autoimmune diseases. I literally can't tell you because it's been done so many times I have no idea. I have at times shown positive signs for an autoimmune disease (which is how I got diagnosed with RA), and at other times, my blood work has not shown a definite anything. That's how people remain in limbo like this for fifteen years, because of bloodwork.

My doctor seems to think it is more likely Lupus now, or at least, that is what she said. I don't even care what it is now, I just want to know what it is so that I can get proper treatment for it. See, not knowing what is wrong means I am not on the medications that would slow down the progress of the disease. I used to be on a drug called Plaquenil, which is used for both Lupus and RA, back when I was showing stuff in my bloodwork indicating an immune system problem. Now, she said she will put me back on that right away if the bloodwork shows any immune system problems at this time. Personally, I am not sure if this is the right approach. I feel so sick, and I am so worried about it getting worse, that I would like to just go back onto the medication because even though I hate being on a ton of medications, and feeling like a walking pharmacy, RA can lead to joint deformities if it is left untreated, and at this rate, if I have it, it has gone untreated for most of the past 15 years. That's kind of a problem.

If it's Lupus, from what I understand, it might not be as progressive as with RA, and it probably won't deform my joints. For this reason, my doctor said she is hoping it is something more along the lines of Lupus. I have never hoped that I would have such a terrible illness before, but I guess if I have to choose one I would go with that, I don't know. Either one is a pretty negative situation. I don't want to be sick for the rest of my life, but looking back on the past 15 years, it is pretty obvious that I probably will be, especially if I never find out what is definitely the problem.

The difficulty in diagnosing autoimmune diseases is notorious. It took years for me to be told I had Sjogren's. I was first told it was "probably Sjogren's" by an eye doctor in 1999, but I was never told it definitely was there until about 2006 or 2007. Sjogren's is an autoimmune disease that can occur either alone, or as a secondary illness to another autoimmune disease, most often Lupus or RA. It causes dryness of the eyes and mouth. For the eye dryness, I have had tiny, punctal plugs in my eyelids since 1999. This allows me to be able to see and read, along with using Restasis drops about five times a day and artificial tears. I don't complain about Sjogren's. It could be worse, as it is for many people who have primary Sjogren's. But I don't think mine is the primary kind. I think it is more likely the secondary kind, and the question is what it is secondary to. I would really like to know.

Hopefully the eight vials of blood taken on Friday will lead to some kind of answers, and I hope that my doctor can understand that I need to know what is wrong at this point, because I really don't want to have to find another rheumatologist just to get a definitive answer. I like the one I have, but she hasn't known me for most of the past 15 years, and I don't think she understands how frustrating this situation is.

Further, guess what else Lupus can cause? Psychosis. And I just had a psychotic episode in the past couple months. So it would surely be nice to know if these physical and psychiatric problems were actually related. I will probably never find out the answer to that.

Also, it would be nice if I knew someone who was capable of understanding that I had these problems. Because nobody in my family understands. My family is prone to thinking I'm some kind of hypochondriac because of all these health problems, and I can see how someone would think that after this much time has gone by with various ailments. But I'm not a hypochondriac. Actually, if I cared more about my health, I would probably be talking about it quite frequently and going to doctors every week. I don't even have a primary care physician. I hate going to doctors, because of this very problem - you go in with an invisible illness and you come out being told nothing but that you need antidepressants. I am not depressed. I am weak, and fatigued severely, and my joints are sore and swollen and inflamed, and my stomach is upset all the time, and I can't sleep at night, and light bothers me. But I am not depressed. I am also not a hypochondriac. I am quite sick of that misnomer that is always applied to women who have mysterious illnesses. This is why I almost never talk about feeling sick. Generally, people will think you are feeling sorry for yourself and you are not really sick at all, even when that is the furthest thing from the truth.
The funny thing is, autoimmune diseases run in my family, and it is my family who totally fails to understand. Other people don't even know in the first place, because I have already experienced enough lack of understanding when I do tell people that there hardly seems to be a point in bothering anymore. When I do tell them, they typically say nothing at all, or say something like my ignorant neighbor who just told me to take some vitamins because he "likes to see people with lots of energy!". Yeah, and I said, "I like to be a person with lots of energy too".

Wednesday, December 07, 2011

Good grades, despite difficulities (this semester is over!)

Well, after all my bemoaning about my difficulties with school this semester, and all the trouble that I had with concentration which I thought was going to require me to withdraw from classes.........I am finally finished! So far, on everything that's been graded in both classes, I got an A, which most likely means my final grades will be A's. That's not something I'm trying to brag about, but I am really happy about it! Grades are not the most important thing in the world, particularly not when you're in your 30's finishing school, and you've already been through a lot of things in life that are more difficult than getting good grades. But grades do count for something. I put in a lot of time and effort, studying and writing papers, and trying to contribute to classroom discussions. And I talked candidly to my professor, who taught both my classes, about my illness, which was not really an easy thing to do, but was necessary to do. I'm glad I did that now. If it wasn't for her letting me put off two tests for a few days, I would probably have withdrawn from at least one class.

Also, if it wasn't for Latuda, I don't think I could have pulled this off at all. I was having some pretty serious problems a month ago that I am completely not having now. I'm not having any auditory hallucinations, at all right now! That is great. I'm not having delusional thoughts. I'm not paranoid. I'm not thinking people are talking about me, or that people are talking about a Holocaust happening, or anything else that might indicate psychosis was in the midst. I'm able to read more now too. I was able to study for my final two tests, and read much more of the textbooks than I had been able to read for a couple of the other tests. So I'm glad about that. Two months ago, I could really not read. I was totally stuck, sitting in libraries, staring straight ahead, thinking and not capable of concentrating or focusing at all in order to read. Being able to read is a big deal to me; it means things have improved. I can definitely measure how well I'm doing at any given time based on whether or not I can read a textbook. Many times, I have been unable to do so. Other times, I can do so. It is always a good thing when I can do so.

So despite the holidays, and family stress, which is always there and particularly increased around the holidays, overall I am doing alright. My apartment is a major mess, which is not a good thing, and I am very disorganized. I need to clean my apartment, clean my car, wrap Christmas presents, and decorate for Christmas, all very soon. Physically, I haven't been doing so great so I haven't had any energy to keep up with things. I have the suspicion that a doctor who told me in 2004 that I had Rheumatoid Arthritis, was actually correct, even though my current doctor has repeatedly stated that he was wrong. I have a lot of pain in my joints, and a lot of major fatigue, that would indicate something is wrong besides Fibromyalgia and Sjogren's Syndrome. So I'm going to my rheumatologist tomorrow to talk to her about that. In all probability this means I am going to have to take yet another freakin' medication, and I'm not sure how long my liver is going to continue functioning with this onslaught of pills it's been dealing with for twenty years. But, whatever.. For right now, my liver works. That's good. And even if I do have Rheumatoid Arthritis, I don't have any deformed joints that I know of, so it is probably not nearly as bad as it could be. It's also possible I don't even have it, so perhaps I'll be lucky and this pain that's been going on for weeks will somehow disappear on its own (doubtful).

But besides all that, things are going pretty well. I can't really complain. I got through school, and that was the big deal for me, getting through this semester. That was the major feat hanging over my head, and I probably would be completely depressed and demoralized if I had not finished these two classes. So, I'm really glad I finished them, and glad I managed to do well. I am so happy to have one hurdle down and one semester at a university finally completed after being really nervous about not being able to get it done. The community colleges were definitely a little "easier" than the university is, but I expected that going into this. I just got thrown for a loop when I started having psychotic symptoms early in the semester, and that made things difficult to manage. I'm really glad that this Latuda seems to be working pretty well for me. Hopefully, it will keep working, and I'll finally be able to get off the Risperdal Consta injections I've been getting every two weeks for several years. I really want to get off that medication, so that I can have an easier time losing weight and avoid getting diabetes.

I also just wanted to say thanks, to everybody reading this blog who leaves comments, because your support and encouragement truly does help me a great deal, and I probably would have a much more difficult time getting by without that. You are all important people to me, and I appreciate your advice and kind words a lot. So, thank you.