Tag: Fibromyalgia


Troublemaking

9
January

My mom told me that the one thing that used to get me in trouble, when I would get in trouble, was my honesty. She said that I was always really well-behaved, but that if something upset me, I was vocal about it. Not really surprising news, is it?

So, I have now added an IP from Huntsville and one from Altoona to my .htaccess file for blocking. This time, they refer automatically to a notice that basically tells the family members involved to just leave me alone. I honestly think that (in order to catch the post on the day it was posted) someone had to be waiting around for me to post something like it. I’m supposed to feel guilty (according to them) because I posted something about them on a website for all the world to see. Now, for those of you not related to me, where in the post did I explicitly identify who I was talking about? And did I say anything worse about her than I did my own mother? (My mother doesn’t read the blog, but knows that I talk about her and has a fairly good idea about what I might be saying. My father does read the blog, and knows exactly what I say about him.)

I do think that I voiced some legitimate concerns. Her son is on a stimulant for hyperactivity. He has dyslexia and he’s hyper is all that my mom, grandmother, or I are ever told–my parents and I have suspected that he might have a developmental disorder for a while. When he wasn’t talking by 2, I was a bit concerned. When that continued into 3, I was even more concerned. I couldn’t bring it up because she didn’t ever want to talk about that kind of thing with me. But I digress. Like I said, he’s on a stimulant. Stimulants are great for some kids with ADHD and some who are on the Autism spectrum. They aren’t necessarily great in a family that has a history of psychotic and mood disorders. Now, I know that the cousin-in-law doesn’t think of me as her family, but I am related by blood to her husband and son. Children in families with histories of schizophrenia are at an increased risk of ending up with schizophrenia. Children who go on stimulants are also at an increased risk for ending up with schizophrenia.  Also, children on the Autism spectrum are at an increased risk of schizophrenia, in general. So, it’s not that big of a jump to say that she should be on the lookout for symptoms.

Also, I think that the idea that maybe it’s hypocritical to continually insinuate that my mother and grandmother are druggies because they have chronic pain and have taken addictive drugs, but that it is okay to give her son something that is well-known for addiction because he has issues is a legitimate issue to be upset about. My mother and grandmother both have degenerative issues with their spines, not to mention a plethora of other problems (neuropathy, arthritis, FM, hypermobility, etc.) that cause them pain. I think it’s a little unfair to treat them like they’re some kind of criminals because they feel the need to seek medication.

I had a cousin on the other side of the family tell me that this would all pass over and things would get better. I don’t think so. Every year since the last major issue (2002), I have felt like a stranger at my family’s functions. I have had this sense of impending doom because of that particular family member. She thinks it is because I’m spoiled and that I want to be the baby. I don’t care about being the baby in the family. On the other side, I have cousins who have kids that are younger than me (and have for almost 16 years) and I’m cool with them. This pretty much comes down to her coming into a family and trying to take over. We were a close family until she came along. Now, not so much.

Anyway, my Nana (or “Granny” as the family member called her) seems to be on the side of her only granddaughter in this. I’m sure that my aunt is pissed. I’m sure that my cousin is, too. Do I really care that these people are upset because I voiced real concerns? No. I’m more upset that they think it’s okay for her to be hateful to members of their family, but if I say anything, then I’m some kind of monster. Double standards suck

I also think it was rather rude of her to call someone who she knows has trouble expressing themselves vocally to express her anger.  The only point of making that call would be to yell at me, since she would know that it would be almost impossible for me to express my thoughts.  If she had an issue, she could’ve emailed me or commented.  She could’ve gone about this in a way where we would both be able to communicate effectively, but she didn’t care about that.  She wanted to be able to make me feel bad, which she didn’t do.

I don’t know.  I might not have posted the “bad” entry this time if I hadn’t found out about the comments that she’d made on the same week that I was informed (via local news) that my cousin had a child that had been diagnosed with developmental delays.  Finding out that she trusted strangers over people that she actually has some relation to just irritated me.  You add that to the thing with my mom and just her attitude in general, and everything just kind of festered.

Sorry if I’ve spent too much time ranting about this.  I know that some of you have probably read a lot more about this than others, and I’m sorry.  Maybe now that my thoughts are known to this family member, though, life will not be nearly as stressful.

Heh. Yeah, right.

2 comments » | 10 Years of Madness, Confessions, Family, FPS-Related

Harder and Harder to Breathe

8
November

On Saturday, I slept all day. I had been feeling like crap, and I thought that maybe sleeping more for a few days might be helpful. It was to some extent. It didn’t help the headache or joint issues, but it helped with a bug that I had gotten from my mom last week.

I got a referral letter from the UAB clinic in town to go to The Kirklin Clinic, which is the UAB clinic in Birmingham. I don’t know which doctor I’m supposed to see. It says “patient’s choice” on my referral, but it has an appointment date and time (in 2011). So, I guess I can find out later. (They’ve put patient’s choice on other referrals before.) So, I will get to see the rheumatologists down there and *hopefully* find out what is going on. I’m kind of glad that the UAB folks here didn’t put fibromyalgia on it. It appears that whenever a doctor hears that you have that, they decide everything you say is wrong is fibromyalgia. It’s a catch-all for some, I guess.

Oh, and in non-health related news: Auburn won their football game (so far, they’re undefeated) and Alabama lost theirs (that makes 2 losses, seals their fate when it comes to the whole “repeat national titles”). This is very good news. Even if Auburn doesn’t get to play in the national championship this year, the whole season will be worth it just to see Alabama’s hopes get dashed. (Cruel of me, no?) Basically, seeing Alabama lose is like a Red Sox fan seeing the Yankees lose. It provides a weird bit of satisfaction. Oh, God, I’m turning into my father!

Comment » | Alabama Weirdness, Family, General, Sickness and Health

Trial By Fire

4
November

A few weeks ago, after I saw the rheumatologist, I decided that I wanted to go to a different rheumatologist. The only other ones are in Birmingham and my dad didn’t want to go there. Instead, my mom convinced him to have me go to an internist in town. So, she called and found one.

I went in for the appointment today. It went as I expected. He said that the problem was fibromyalgia. My red, swollen, hot joints are apparently fibromyalgia. I don’t quite understand that since redness, swelling, and feverish joints isn’t a symptom of fibromyalgia. It might be secondary to it, but not a full-on FM symptom.

I had my dad go to the appointment with me, and he said that I could go to Birmingham if I needed to. I think he’s finally starting to understand the frustration. I guess that’s a good thing, right?

1 comment » | Sickness and Health

Ooh! Shocky!

20
June

Back in May, I mentioned that my neurologist (well, his Nurse Practitioner) scheduled me for a bunch of blood tests and 2 nerve studies (an EMG and NCS). I had the blood tests this last week, which left me feeling more like crap than I already did. Tomorrow, I get to have the nerve studies.

I’m not really looking forward to this. I really want to know what’s wrong, but I just wish that there were some Star Trek way of testing where they could tell by waving something over me. That way I wouldn’t have to do the whole torture test thing.

I know this probably sounds a bit twisted, but I do want them to find something in all of these studies, whether it’s the blood work or the nerve tests. I don’t actually want to feel bad, but I want to have a reason to feel bad. I don’t want it to be like with the fibromyalgia, where I went through all the tests and stuff and find out that it’s something that couldn’t be found on tests. (Side note to not wanting it to be like FM: I also don’t want something to be wrong, but have doctors treat me like it’s nothing because they can’t prove it exists.) When it comes down to it, I don’t want to be sick for attention, meds (esp. since I can’t take them), or anything like that. I just want to have a legitimate reason for why I always feel like crap so that I don’t feel like I’m becoming a malingerer.

I also get to see the actual neurologist tomorrow, which should be good. I guess he gets to explain to me why it’s either all in my head or not, which would kind of be his job anyway.

I am exhausted. I really wanted to do some stuff, but I think I may just curl up and conk out.

2 comments » | General, Mental Health, Sickness and Health

Must Be Keenly Aware

12
May

Today is Fibromyalgia Awareness Day, which I’m sure that people have some kind of feeling about, whether they realize it or not. People tend to have a belief as to whether or not certain diseases, syndromes, etc. exist, and many times they are not afraid to share said belief with the world. Since I have been diagnosed with Fibromyalgia, and accept this diagnosis, then I’m sure that you can pretty much surmise that I do believe it to be a valid diagnosis. I know that people can say that it doesn’t exist because there is no test that confirms the diagnosis, and it is usually diagnosed after all diagnostic tools are exhausted. Of course, there are other diseases that aren’t questioned that have an unknown origin, which makes being diagnosed with Fibromyalgia and doubted about that legitimacy all the more frustrating. (It’s even worse when a doctor doesn’t believe anything is wrong.)

Okay, so, next week I get to see the nerve doctor. If I were to say that to Nana, she would ask me something related to psychiatry because she hears the terms “nerve doctor” or “nerve problem” and immediately thinks of psychiatry. I am referring to my neurologist. I haven’t seen him in almost a year. The last time I saw him, he was convinced that I might have a sleep disorder (which was eventually tested and dismissed as an idea) and that I had something wrong with my spinal column that caused a lack of reflexes in my legs. He later tested me when I started waking up with paralysis, but he didn’t actually see me prior to that MRI. I’m a bit worried about going in this time since I’m going in for neuropathy pain and (since I made the appointment, I’ve decided that) I want to find out if he has any idea why my ears leak clear fluid and I end up with really bad headaches because of this. I also want to find out if he can possibly treat my various headaches. I know that I’m not exactly the kind of patient that a doctor wants to try to treat for headaches, since I tend to end up having a reaction to whatever drug I am placed on. (I can’t take Imitrex because I had a reaction to it, and I can’t take preventatives that have been tried because of reactions to them.)

I really need to get a life. I feel like all I ever do is talk about health problems in this blog. I bet that bores the crap out of anyone who dares to read this. Of course, having health problems kind of makes it difficult to have an active social life. Bleh. Kind of catch-22-ish.

Comment » | General, Sickness and Health

They See Me Rollin’, They Hatin’

13
February

When I was little, I wanted to be Whitney Houston. I doubt that I’ve mentioned that on here before. I may have, though, but when I was young, I dreamed of becoming Whitney Houston when I grew up. I wanted to be her, with the ability to dance of Michael Jackson, as well as my own book deal, the ability to do hair, and a degree in teaching. Of course, this was an illogical thing to wish for since I was (well, still am) a redhead with those strange little turquoisey blue eyes with different colors in ‘em (love that heterochromia). It was also illogical because apparently a combination of weight and funny genes (not quite funny syphillis funny, though) determined that I couldn’t go around dancing anymore after my mid-teens. (I tried to get around this by dancing to a Britney Spears video in 2000. This resulted in a broken foot.) I also am still suffering from the Bellatrix hair that I mentioned in my Tumblr last week and featured as my Facebook profile picture for Doppleganger week. As for the degree in teaching, I’m fairly certain that we can all agree that I should not be allowed near small children. That might lead to dangerous fuzzy liberal thinking and stuff…I don’t know what part of that is worse, the thinking or the fuzzy liberalness of it.

I didn’t become Whitney, despite my wishing and hoping and thinking and praying. That kind of bummed me out for a while, until I learned of her marriage to Bobby Brown and, what I hope was, her subsequent downfall into drugs and happy-hippie-dipping-in-the-Jordan-River. Of course, she redeemed herself.

I didn’t become a lot of the things that I set out to become in my life. I wanted to be a singer, but for about 3 years, my voice wouldn’t do anything other than talk. I wanted to be a dancer, so my body played the arthritis-fibromyalgia-autoimmune card on me. I wanted to do hair for a living, so I was reminded that I loathed how people touched my “beautiful red hair” and how that made me feel used and cheap. (I may be cheap, but I shall never be forced to feel used!) I didn’t become a teacher, because I determined in 8th grade after being turned over for truancy to a pre-court thing that I absolutely loathed school. (For the record, I was not actually truant. I had gotten a letter from my doctor in 2nd or 3rd grade that said that sometimes I would get so sick that I would just be out of school for a month at a time. This letter, which was 100% legit, had worked for 6 years before anyone challenged it. That year, of course, my gallbladder had failed and no one believed me for 2 months while I was getting all kinds of tests, then I hurt my knees and foot, and finally ended up with the flu, asthma problems, bronchitis, and a boocoodle of other problems.) I didn’t become a music producer, which was an unofficial major for me. I didn’t even get to try to become a doctor because my mom said I couldn’t handle the staying up for days on end…um, that’s not necessarily true. (I can sometimes go days without sleeping at all!) I decided after I entered the Social Work program that Social Work was teh suck when it came to majors for me, but before I got to the point where I nearly finished and got kicked out for being teh crazy. I have yet to get a degree, and don’t know if and when I ever will. At this point, I think I should be given an honorary doctorate. (I’m not kidding, since I’ve been in and out [mainly in] of college since August of 2001.)

Of course, going back to school might entail going to UAH again, which I’m not that scared of. Typically, shootings don’t occur in the same place twice, right? So, I should be safe. Of course, Amy Bishop isn’t the first professor who has allegedly killed people. (A physics professor was convicted of killing his wife, who also worked for UAH, a couple of years ago.) But, as far as I know, the liberal arts department hasn’t had any killing teachers yet. Besides, given my ability to not get all scared when the knife got pulled on me during my interview for Social Work (it was part of a role-playing thing, and yes it was an actual knife), I think I might be able to handle it. Of course, that was a little different, since I was in no danger.

Oh, I’ve figured out that I’m a bad luck charm. When I was a little kid, a relative of mine wanted to meet me before she died. She had been saying that for months. She died right after she met me, like the next day. (She was 99.) A semi-distant cousin had her home, as well as her mother’s home, struck by a tornado. Her husband was killed in the tornado, leaving her daughter and her unborn son without a father. A dance teacher I had as a child was killed on a rainy road in 1995 or 1996. In 1998, the day after my mom and I dropped off a refund of the payment that the parents of my friend Sara had paid for her to go to Chicago on a choir trip, her brother (who had had the same Algebra book that I had that year) decided to go after the family with various sharp weaponry. (If you want to look it up, search google for Jeffrey Franklin Huntsville.) That same year, there was a school shooting in Jonesboro, Arkansas. It was at a school that my parents had considered sending me to if we had moved to Jonesboro the year before. (I had insisted that we not move there.) In 1999, Patrick, the kid that I sat next to in my 8th grade homeroom, was killed by his father, as was his younger sister, before the father killed himself. The dorm that I stayed in in 2005 had a girl whose room was set on fire and she had to jump from the window. I had a friend killed in a drunk driving crash last year. And now the school that currently holds my transcripts has had a “school shooting”. (BTW – it was a workplace shooting that happened at a school.)

Comment » | Alabama A&M, Alabama Weirdness, Family, Friends, General, Pre-College Years, UAH

Mine Eyes Have Seen

4
January

So, my last Twitter update still rings true. I have yet to have a pair of glasses to wear. I have to take them somewhere this week or else I think I’m going to go crazy from the headaches. I had forgotten just how bad headaches could be. It’s funny how you can have migraines and tension headaches for years, but the second you take away the glasses that keep away the eye strain headaches, it’s just completely insanity provoking.

I had an appointment with my rheumatologist last week. He finally convinced me to go back on my lovely steroids. I just don’t take the full 40 mg each time I do it. I only do 20 mg twice a week. My inflammation is bad enough that I probably need much more, but the steroids are so hard on my system that I have to determine just how much of my treatment that I can handle.

My rheumatologist has changed my diagnosis again on the sheet, which is now confusing me. Instead of marking Sjogren’s or Fibromyalgia, he selected Connective Tissue Disease, unspecified, and Osteoarthritis. Apparently, my lovely body, which still exhibits the symptoms of Sjogren’s has gone hog-wild on attacking all kinds of connective tissue. Every day I seem to learn what a new level of pain my body can sink to.

I can no longer use any eye drops that we have in the house, which is really difficult given the whole dryness factor of Sjogren’s. All eye drops cause my eyes to feel like someone has taken acid and poured them on my eyeballs. I’m having to be careful with certain foods, too. Strangely, I’m having to eat higher fat stuff in order to maintain any sense of normal feeling in my body. If it has certain carbs in it, I’m sick soon after.

Relaxing helps, which would be great, if I could get my father to stop insisting on telling me how horrible I am. I ate a personal pizza thing he’d gotten at the grocery store a few weeks ago, about a week after he got it. On Saturday, he decided, after seeing me eating a flatbread sandwich, that he had to have the pizza. Well, he got mad when he discovered that I had eaten it. (I ate in the middle of the night when I had nothing to eat and I figured that since the man hates pesto that he wouldn’t want a pizza with pesto sauce.) Well, apparently, this was just further proof of me being a pig (he even snorted to prove his point) and that I’m an invalid. When I told him that the only thing I could ever imagine making me happy was his death, he said that that would make him happy too because then he wouldn’t be around me and then I would have to finally learn what it’s like not to live off him. (For the record, I don’t actually want him to die. I just want him to be a dad who actually cares about his family.)

It’s kind of funny that he said that. I’ve been taking care of him for years. When he lost his job because of his anger and depression, I was the one who used my money to buy him groceries. I’ve been the one who made dinner a majority of nights for years. I’ve taken care of him when he’s been sick. I’ve done the same for my mom, and I took care of his father as well.

He also told me that my mom and I use him because he constantly has to take us to the doctor and the hospital. I haven’t been to the hospital in months, but when I was there, it was due to a sprain that wasn’t getting better. I was there WHILE my mom was there with her break, so there was no going back and forth. As for the doctors, well is it really my fault that I drew the short straw on the whole illness thing? Every bad gene that could be inherited, I got, and it’s like he thinks I enjoy this. Who would enjoy this? Yes, being crazy was kind of cool because I see things differently, but some of the crap that it has caused me to go through are awful. And the physical problems? Well, y’all know how I feel about hate-mongers and completely ignorant people? I wouldn’t wish any of these problems on them. Maybe I have some sort of martyr thing, but I would rather be the person suffering than know any other person was going through this kind of pain. Feeling like you’re dying is hard enough when you have panic attacks and know it’s not really real, but in a way with the physical problems, it is real. I’m not actually dying, but I get this sensation that my body feels that I am because it’s attacking itself. That can’t make a body feel all fluffy-duffy-good or whatever.

I finally figured out what his problem is. He doesn’t want to feel any better. He wants to be miserable. He watches things that make him mad on tv. He plays games on the computer that piss him off. He snarks at me when I try to do things to make him happy. It honestly feels like he is making an effort to make himself feel bad. I guess he wants the same kind of care and attention my mom gets.

Oh, I have had what I would assume is an inner ear infection since right before Christmas, but I was unable to get a doctor’s appointment. I’m currently waiting until I can call my doctor to find out if maybe I can get in. If I don’t get whatever is going on in that region taken care of, then I’m going to fall down one of these days during a dizzy spell.

Oh, and if the whole dad issue, health crap, etc. wasn’t bad enough, my friends are all getting married, including the guy I liked…only, he’s now married to one of my friends. I would be happy for them, but some of the couples have barely known each other for more than a few months before their nuptials and the rush seems to be kind of odd. If you’re going to be with someone for an eternity, as one would assume they believe with the whole temple wedding, then why not just wait until you are absolutely sure that you know, love, and accept a person for who they are?

1 comment » | Family, Friends, General, Sickness and Health

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