Epiphany

galiger @ 2009-12-24T14:38:00

2009-12-24T19:38:39Z

I just finished watching a documentary called "The Business of Being Born". It was about births in the US. It was a little biased, focusing on home births, but still did a fairly good job.

It just got me thinking about my own maternal instincts or whatever you want to call them. Part of me would love to experience a pregnancy and birth, and being a mother (in a long time from now), but another part of me thinks I'm just idealizing the whole thing. When I think realistically, I realize that I feel I shouldn't be a mother- and that feeling mostly steams from my ill health. And that makes me a little sad, realizing that my future is limited to so many extents. I mean... having children is such a milestone and identifying event for most women. Sometimes I feel that I'm less of a woman because I've made this decision. At the same time, I get a little defensive. It's my decision to make, and whether or not I do have children shouldn't be the only action to define me and my character. I am more than some baby-maker.

Believe me, I am in awe of the fact that us women are capable of such things. I see these little infants at work all the time, and if I have a moment, I begin to think how this little being, this little person, came from inside a woman. It's miraculous, really.

I just feel so very muddled on the whole subject. Part of me thinks, "well, if I didn't have this disease... If I had a better job... if I hadn't already taken care of so many people..." But that's just it.. I have this disease, and it hinders my ability to go to school and get a better job. And I have gotten it so early because of the stress of my life. And nothing is going to change that.

So then I begin to feel stuck. Like I've been robbed of life and it's choices. I feel like I'm constantly compromising, and I'm tired of it. I wanted to dye my hair, and clean, and do dishes. I have the energy for maybe one of those tasks. I'm so tired of being sick and tired.

I just want one pain free hour. I'm not even asking for a whole day... Just one hour, where nothing aches, nothing burns, nothing hurts. Cause I can't remember what that feels like anymore.

It seems like lately, all my issues and insecurities, are attached to my FMS. Well, even if they found a cure tomorrow, my life wouldn't be perfect, but it'd be as close as I'd like to aim. That's a pipe dream really. And I'm far too realistic to hope for a "cure" any time soon.

Not that bad...

2009-12-20T15:52:52Z

Well, I ended up going to Melissa's house yesterday. It hadn't started snowing here in Somerville when I left. I hit some flurries in South Brunswick, but it was coming down full on in Hightstown. Funny how much difference 30 miles can make. The actual visit with the family wasn't that bad. I got there a little after noon and left around 4:30. Only one real snide remark- from Meagan of course;

Me: Oh, I'm glad I remembered my camera to take pictures of the kids
Meagan: Yeah, cause it's gonna be another year before you come and see them again
Me: (after a second pause) Well most likely. It's gonna be next year in a month.

In that split second, I remembered Rob's advice to deflected it quickly, without creating an argument, to try and not let it bother me. It did, bother me, that is, but as long as Meagan didn't know that, we're cool. Talking to Rob about it all helped. I was preparing myself for the worst and was presently surprised.

And I also got a quick chance to explain to Mom why I probably won't be making another trip down to see her for Christmas- I really can't handle more than one big outing per weekend, and it looks like my big outing for Christmas weekend is a shindig with Rob's family. Luckily, she seemed to understand, although I got the feeling she may come up here, which would be great.

Maybe it's the space, and knowing that I am so regularly away from my family that made this trip a little easier. Also, the kids are getting bigger, and understand a little more that they can't rough-house with everyone who walks through the door. However, I did cringe/flinch every time a child came barreling my way. Tobin was so cute- he actually remembered my name. Normally, I'm called Aunt Meagan the whole time.

Mom actually did a really good job with gifts this year. Normally Mom buys way too much and random crap that ends up in my closet or somewhere taking up space, a total waste of money. This year she got me a nice robe, and gloves and sleep pants- everything fit and I like all of it. She even got Rob these nice xbox360 fleece pants. I'm incredibly impressed and haven't stopped talking about it.

The real irony is that the robe Mom got me, is the same I got her, only a different color. We now share a strong affinity for soft and warm things. Side effect of Fibro.

The drive home was super nasty. Took me over 1 1/2 hours to get from Melissa's house to SMC (to pick up Rob). My fastest speed was 30 mph, and that was only when I was behind a plow. OH! Kelly called me on my drive home- David went to Jared's! HAHA! Seriously, he did go to Jared's and proposed. It's really ironic because Kelly and I had just been talking about the stupid Jared's commercial, and engagement and marriage. I'm super happy for her. I forgot to call her when I got home- I just crashed on the couch.

So all in all, it was a really good day. It would have been better if Rob hadn't worked and he could come with me, but *shrug* at least we have out time coming up next week, which I couldn't be more excited about.

Christmas is time for family...

2009-12-19T10:00:46Z

...which is why I dread it so.

My family was supposed to be gathering at Melissa's house today, and I was dreading it. I even cried about it because I've wound myself into such a tizzy over how they treat me. The low comments, and misunderstanding and lack of trying to understand, the judgment and the fact that even if I changed everything I do, it wouldn't make them happy. "Them" being my sisters, and in turn, my mother. She's like a child and just repeats/believes what people around her say, and even though I'm her daughter, she doesn't stuck up for me, and her silence if awful. Sometimes, she'll even agree with them in little ways.

So I was dreading going, and kinda hoping for a way out of it. Then yesterday afternoon, Melissa calls, and tells me that between the kids having the snuffles and the predicted snow, they are kinda lowering the expectations for this little shin-dig. Damien's family is no longer coming, and Melissa tells me it's be no big deal if I decided to sit it out. Now here comes the delemnia. I haven't visited in a long time, like July. And it is the Christmas season, and you're supposed to see family. Melissa and the kids are pretty much booked all of Christmas and Christmas Eve- which honestly, I rather not spend the actually day with them. The kids are hyper from presents, and they just want to show you all their new toys and you hardly get to actually visit with the adults.

I also feel like I should at least see my Mom. I have a gift for her too. But I also rather not spend my Christmas with Mom and Meagan alone, because that's worse than being with everyone, because Meagan will have no witnesses to her cruelty besides Mom, who, as I said before, doesn't prevent anything anyway. So i wonder if it'd be a better idea of going today, getting it over with, and then beg off for Christmas day. At least then there's less anticipation and dread. The guilt will be supreme, but that's nothing I haven't handled before.

So I don't know what to do.

I figure I'll call Mom later in the morning and ask what our plans are for Christmas. And explain how if we're not doing anything on Christmas Day, I'll come down today. I was planning baking cupcakes for the gathering, but now I'm not sure if I should start making them. And the plan of taking my placement testing today, is pretty much thrown out the window... *sigh*

galiger @ 2009-11-15T21:19:00

2009-11-16T02:19:43Z

I"m excited about our coming Thanksgiving dinner. We're having it early, this coming Friday. I'm a little worried because I'm so tired and in so much pain from planning the dinner that I doubt my ability to cook dinner and be good company, without succombing to the pain.

As much as I'd like to think that I'm dealing with the Fibro, I'm still very much angry. I feel robbed of my life. The first two days of my vacation were spend in exhaustion. Right now, typing is difficult because I don't want to move my hands. It's so bad that I'm comtemplating going to the doctor's and asking for narcotics. Not for everyday use, but just for those days that it hurts so bad. Of course, that's a slippery slope when you're in chronic pain.

I hung out with Courtney today. I had a lot of fun. I hate to say it, but one of the things that makes it easier to spend time with her, is that she also deals with chronic pain and she understands the daily struggle of trying to have a life and deal with the agony of doing so. I actually find it very hard to spend prolonged periods of time with my peers because the misunderstanding. People act like i should be able to do it all- go to work, go to school, manage my home, have a social life- when I can't, I really truly can't. This vacation is not about taking a break from life, it's about catching up. About seeing family, doing chores, and spending time with Rob, all these things I don't get to do on a more regular basis because I'm in so much pain.

Right now, I'm worried I won't be able to sleep because of the pain. That's a shitty feeling. And I feel bad that I'll wake Rob in my tossing and turning. Well, I've lost my train of thought. The pain does that. Robs me of my mind as well. Maybe tomorrow will be a better day.

A foul mood

2009-10-31T16:18:17Z

Something's off, different, strange. And I can't put my finger on it. Which makes the feeling worse. So I'm irritable and agitated for reasons unknown, and it's almost impossible to verbalize it.

And I find myself getting annoyed with Rob. I don't think it's his fault, so I'm trying my best to not take it out on him. Well... maybe it's his fault. I keep asking him what we're doing for Halloween and Thanksgiving and the holidays in general and his answers are so fucking vague that it's like no response at all. So here it is. Halloween morning and we have no plans. We were going to try and go out last night and I was too tired and in too much pain, so we didn't. Instead we stayed in.

We also have some vacation time planned, and in that time we're supposed to have our Thanksgiving dinner, but Rob also wants his wisdom teeth pulled, but hasn't even made the appointment. And I'm jealous that he has two weeks off, but I only have one. So I'll probably be spending my time off taking care of him, cleaning the apartment and cooking a big family meal...

I feel super stressed about work and school and life, and I feel sometimes that I have too many decisions to make and I don't want to be bothered about deciding something fun to do or what to make for dinner. And for some reason Rob has taken a recent ongoing route of vast indecision. So I'm frustrated.

Of course I don't know if it's because I'm in pain or tired that I'm really annoyed, or the pain/exhaustion is amplifying a small irritation. So now I have to decide what to do about that... Too many decisions, too many worries.

galiger @ 2009-10-21T10:28:00

2009-10-21T14:54:25Z

I'm angry. Angry with my mother, more precisely. And I wouldn't let myself b e angry with her until I was far away enough to not hurt her with it. SO here I am, over an hour away, and it's been since July since I've seen her. Been at least three weeks since we've talked on the phone. And now I'm able to feel the anger and hate I've been harboring for her since I was a child. I hate her for not being a proper mother; for acting like a child when I needed her most. For not sticking up for me against my sisters. For not being there when I needed her. For her incomplete intelligence, for her lacking maturity.

I realize that is why I make friends with all these older women- Bonnie, Sam, Darlene, Donna, Debbie... Why I've always found myself chatting with my friends parents at sleepovers when my friend slept in. I've been looking for a proper mother, or at least a relationship to fill the void my mother left.
The anger and guilt aside, I'm sad. Sad, that I haven't gotten many calls from her. No attempts to talk to me or see me. No "hey, how's it going?" Hell, not even a response to my own guilt ridden attempt to reach her. I'm sad that without Mom, there's no one in my family that seems to care. Before, I could always think that at least Mom cared and would be there for me if I needed her. That even though Melissa and Meagan considered me a failure and a boring old lady, at least Mom would try to understand, and if she couldn't, she'd love me regardless.

Perhaps I'm better off. Hell, my brother Rich pretty much walked away. He had numerous "families" growing up. Only I doubt he wrestles with the same feminine guilt the Gallagher women are riddled with. Maybe I should just be happy with the non-blood families I've found. It may not be as deep or binding as true family ties, but that's the beauty of it. It shouldn't hurt as bad to walk away if necessary. The initial loss, heartbreaking, but as time passes, it will be a bittersweet nostalgia instead of a painful longing that holds me now.

galiger @ 2009-09-16T07:34:00

2009-09-16T12:13:15Z

A couple of things are on my mind this morning.

I'm feeling quite defective. Last Saturday night, I was sitting on the couch working on a new project, a cross-stitch. After an hour or so, I got up and the area between the arch of my foot and ankle hurt. I'm kinda used to strange pains, but this was much sharper than my usual. I figured give it some time, it will be okay. As the days go by, it's gotten worse, and the pain goes half way up my leg. There is a strip of pink following the muscle. I think I pulled the muscle and it's getting worse because I'm not resting enough but don't know for sure. Part of me thinks I should go to the doctor's but I was just there last week (had a bad cold and asthma came back). To add to my indecision, Rob said something that didn't settle well with me.

Monday morning, I mentioned how it still hurt, and that I was sorry I was always complaining, that he must think I'm a hypochondriac and his reply was akin to "well, sometimes". Now that last bit about being a hypochondriac, it's a self depreciating joke, something I might say about myself but it really hurts if someone else were to state it. So I got really upset and I was really hurt. Now it's not really his fault, I started it. He had no idea that it hurt me so badly. So I went into the bedroom to cry (I'm PMSing too). Then he came in to cuddle and hoping for nookie and I had to turn him down because the last thing I wanted is to end up crying on him instead. Instead I hid my face and how I really felt.

It's just so hard. I never know if an ache or pain warrants a doctor's visit, if it's real or that I am crazy, that's it's all in my head. I mean a true hypochondriac isn't going to actually be self aware enough to say "Yeah, I'm crazy, I'm not really sick". Like the ongoing nausea. So far the tests say nothing. Same with the allover aches and pains. I've been given the diagnosis of Fibromyalgia, but I don't have any tender points. I don't want to be sick. But all the time, there's something else wrong. And Rob... I love him so much. I don't know how he deals with me all the time. I'm so negative, and I complain all the time, without even realizing it.

And here I am, unable/unwilling to even tell him, because it will be me again, crying on him, complaining. I'm scared. Lately, I've been thinking about how I want to marry him someday. But how can I ask anyone to saddle themselves with this mess for the rest of their life? I'm constantly afraid he'll just get sick of it all, and walk away. I know he tells me otherwise, that he won't leave. But there are so many times I wish I could leave myself behind, so why wouldn't he?

Somewhat connected was a conversation I had with Johart, one of my coworkers. It's not really important how the conversation got started, but we were talking about divorce. He mentioned that on his Facebook, it says "I'll be fine in 2009" as in he plans on divorcing his wife in 2009. He went on to say that it hasn't been right with his wife for six years and you can only coexist for so long. He was just waiting for his twin sons to graduate from high school. Then he says his daughter is still 13 but *shrug*. I wanted to slap him so bad. The whole thing just let a horrible pit in my stomach. My father left when I was 12- right about the time my older brother and sister graduated high school. And part of me wondered if Dad was just playing the very same waiting game, just waiting until the older two were out of the house. What, so he didn't have to pay child support? That it was good enough, that his parenting was done? Or is it an issue of gender, that he raised his son, to hell with the girls. It just got me so fucking mad.

As much as I say I've forgiven my parents and have comes to terms with their divorce, I don't think I'll ever get over the fact dad left. He tried for appearances sake for a little while, but he just gave up. Wasn't I worth it? Apparently not. And Johart's poor daughter is going to go through the very same thing. And she's gonna pine for her father's love and attention and affection for the rest of her life. Just like me. To this very day, I just want my dad to turn to me and say "I love you, I'm so proud of you and I'm sorry I left you". I'll never get it. So now, I'm perpetually afraid others I love will do it too. To make matters worse, time has yet to prove me wrong.

galiger @ 2009-08-20T14:26:00

2009-08-20T18:32:43Z

Just to forewarn everyone, I'm feeling very down and just need a little vent and a little lifting of the spirits.

I was in the shower, thinking to myself how tired I am. How I'm afraid to see an old high-school friend tomorrow because I don't want to be a downer with all the sucky shit going on in my life. And I got to thinking about how my boyfriend is the only good thing I got. Then I started thinking about how much easier his life would be without me (before anyone gets too alarmed, I am not suicidal and would not harm myself in any way).

So I started crying. And I haven't been able to st\op for the past hour. It's been building for a while, I suppose. We don't see much of each other during the week even though we live together because I work nights, and he works days and every other weekend. So his weekends off are our time together. But every weekend, we have to cancel plans or turn down an offer because I'm physically unable. And I usually end up crying on him because of it, either out of pain or frustration or both. But then he'd let me talk/cry it out, and we'd cuddle, and spend comfortable, quiet time together.

*warning- TMI ahead* But then about a week and a half ago, we were ... *ahem* getting busy, and rather than regular fun feelings, I felt pain. In other words, getting aroused was painful- not the actual sex, just the act of kissing and foreplay. So much so I don't even want to think about sex. I've made a doctor's appointment, but it's not til Sept. 4. Until then... I can't even enjoy cuddling with the love of my life because it's causes painful arousal (what can I say, I'm very attracted to the man). And of course, we have two long weekends(4-5 days) together before my appointment.

From what I read online, this isn't an issue easily solved or fixed. So it's another unfixable problem with me and my body. Everything is just going to crap. My joints ache, my feet are on fire, my jaw throbs, I'm spotting for a week before my actual period, I'm nauseous all the time, I never have any energy, and I can't remember what it's like to not feel pain. I feel like I've been robbed. My life, my body, my future- all of it has been stolen from me, in the matter of a year and a half.

He admitted the other morning that it wasn't easy loving me, but it was worth it. He's so good to me, and I can't help but feeling he deserves a happy, healthy girlfriend. Not me.

I'm not saying I don't deserve to be happy. But not at the cost of his. And really it's his decision, whether he wants me or not, and I can't make that decision for him. I'm just afraid I'm a sinking ship, and can't bear to think of him going down with me.

I just need to figure out if there's life beyond fibro, and more so, if that life is worth sharing.

I'm starting to really hate my job...

2009-08-20T14:02:37Z

I miss my old job. It less physically challenging, but also more mentally stimulating. I actually felt like I was helping, whereas now I do nothing but help people. I mean seriously, I walk into a room and people groan. And my boss is a complete douche bag. The nurses treat me like crap. I work shitty hours and was told to not even think about a shift change for at least three years- three fucking years. My back hurts all the time, my feet ache. And what do I get for it?

So simply put, I hate my job. And I'm stuck.

***

Rob just came out and read the screen while I was in the bathroom (why do I always feel weird when he does that?), and told me why don't I look for another job. There may not be jobs out there but I can at least look and try. At least it wouldn't be like I was hating my job but not doing anything about it. Which is true. At the same time I'm kinda scared of leaving the hospital. I have alright insurance, (which caused me to get all new doctors), I have a history and repore with the laboratory staff, hell, I've even started a 403(b). Where am I going to find another job that will pay close to $16 a hour? Plus I have a raise coming my way in the winter. And who says I'll like it anywhere else? Even with a better boss or similar pay or a better work environment, I'll probably still hate my job because I dislike the task of taking someone's blood- which is my actual job. Bottom line: I don't feel good about being a phlebotomist. It's not an aspect of myself that I take any sort of pride in. I'm the type of person who can take pride in their work. (I'd never make it working for an insurance company)

You would think this would push me harder to go back to school. But of course, I still have all the other mitigating factors are in the way. I'll have to ponder on it some more...

Careful, it's a long one...

2009-08-15T16:19:55Z

Why must some people insist on the final word? Does it give them a sense of victory? That they must be right and god forbid someone disagrees. I hate that. It's petty, it's stupid, and it accomplishes absolutely nothing. I mentioned before that I joined this online support group for Fibromyalgia. And it really hasn't brought me the support and help I was looking for. To compound that, this random member sent me this message, and we had this whole argument about Lyme's Disease. The convo is below:

Hey galiger,
I too have (peripheral) neuropathy and fibromyalgia together. The cause for me is Lyme disease.

Since you live in NJ, a highly endemic area, I figured I'd give you a shout, because it could possibly be the cause for all that ails you.

The tests for Lyme are completley unreliable however, so a negative test does NOT mean you do not have it.

Unfortunately only a Lyme specialist can completely rule it out or diagnose you for sure, from his/her expertise, based on your specific symptoms.

Best wishes, Allison

***

I actually don't have neuropathy, just the tingling and numbness that goes along with Fibro. I had that god awful EMG test to rule out any nerve damage. I'm in between doctor's and part of me is tempted to let the next doctor start fresh, and go through everything again.

NJ is so rampant with Lyme's, it's ridiculous. My boyfriend had it as a child, actually, but hasn't had any lasting symptoms (he had super long courses of antibiotics).

Unfortunately, my penchant for the indoors and dislike of the sun, I doubt I was outside long enough to get a tick. And I don't have any outdoor pets, so that makes it even more unlikely. I'm a rarity. ;)

***

Hey galiger,

Guess what--I'm a rarity, too, and I have Lyme disease--and my sister and her friend and her friend's mother all rarities like you! We allI dislike the outdoors and never have had outside pets. We're all city people but live in an endemic area and contracted Lyme.

I myself have never been camping in my life nor walked through brush or any of those things.

Believe me, if I can get it anyone can!

A tick can attach to you, walking from your car to your house, especially if you live in an endemic area.

Ticks are in grass, manicured lawns, hang out along shrubbery and on trees--everywhere (obviously) especially in NJ. Anywhere where there are white footed mice, rats, squirrels, chipmunks or birds, you will find ticks (they're the major carriers) and find Lyme disease.

My sister contracted Lyme and she lives in the most densely populated city in New England--it is very CITY--last summer she was inadvertently bringing in ticks from the shrubbery outside of her condo complex (four in total--in the city!)!

What does your boyfriend think about your symptoms? Did he have neurological Lyme or the arthritic type?

I mention "neuropathy" because that is a term for tingling in the extremities, just as fibromyalgia is a term for pain. So you do have neuropathy (as a term, not a diagnosis) even though the test was inconclusive.

And for me, my tingling and FM are caused by Lyme. If you live in NJ and your boyfriend had it and everyone has it but you don't, but you just have all the symptoms of it...well, my guess is you probably do have it.

Of course I'm not a doctor. And the testing is so poor though that only a Lyme doc can rule it out, unfortunately.

Good luck!

***

I didn't mean to be rude when I said I didn't have neuropathy. What I was trying to say was that tingling/numbeness in limbs is not neuropathy. As it states in a medical dictionary, it is "an abnormal and usually degenerative state of the nervous system or nerves" and my nerves are completely healthy- well they are normally conductive. I'm just anal about medical wording- it can make a big difference, especially when speaking with a medical professional (I work in a lab in a hospital).

Also, I have looked into Lyme disease. I know screenings can be false negative. They are more often false positive, which is why they are sent out for further testing (western blots). I've never had any joint swelling nor any facial weakness or paralysis. I've never had a tick. I've never had a rash. And it's not like I would never see it, I check my skin often for new marks and moles- skin cancer is prevalent in my family and I have extremely fair skin. My rhuematologist has ruled it out. Living in Jersey, I know all about ticks and the dangers. My great grandmother was hospitalized from complications from lyme disease (combined with shingles). I was purposely being nonchalant and flippant when I said I was a rarity. I was trying to shoot down the subject because I don't think that is where it came from and I wanted to change the subject without offending you.

Personally, I felt you message was a little rude, if not pushy. You suggested lyme, I disagreed and then you come back at me in a passive aggressive manner. You should have taken my answer at face value. As for my boyfriend, he is supportive regardless where my FMS came from. It's here, and it's not going away, and trying to pinpoint exactly where it came from (an illness, an injury, stress etc.) isn't going to change that. I'd rather focus on managing today and tomorrow and the next 60 years. Again, that is my decision. If you feel your FMS came from Lyme's and that gives you peace or closure, I'm happy for you. We need all the help we can get.

I'm sorry if I've hurt your feelings. It was not my intention. I just wanted to explain myself.

***

Wowee! That's too bad that you found my PM pushy and passive-aggressive when I was truly trying to convey the seriousness of letting symptoms go which may down the road end up Lyme disease (like what happened to me! ten years misdiagnosed!). That is my concern. And I am truly concerned.

It does not hurt my feelings that you are misinformed and flippant about Lyme disease. But it does concern me for sure. You're a young person and should be getting treated for the cause of your fibromyaglia and not be left to languish. The doctors should be more pro-active, I believe, in finding the cause of the symptoms.

There is a clinical diagnosis of neuropathy, sure, but rather than say to people I have tingling/numbness in my extremities and my tongue, I tell them I have neuropathy, even though my EMG tests, too, were clear--I can feel it--it's there--and that's enough for me!

So, I see with your technical background that you may feel like you're being dishonest if you say you have it. But just because it doesn't show in a test, doesn't mean that you do not have it, when you live every day feeling it. It's your reality. And that's what I was getting at.

So, I was diagnosed with Lyme over three years ago and since then I have read nearly everything there is to do with Lyme disease (and watched the IDSA hearings two weeks ago with testimony addressing all of the Lyme studies which have ever been done, not many I know) and there is nothing that states that there are *more* false *positives* with the testing, as you stated. Testing is faulty period. And it's a shame.

It's not possible to actually feel a tick bite. We're all relying solely on our eyes to catch the sucker in action. In my case it was behind my ear, on my head, and I did find it but I would say in most cases, amidst head hair, people would never find them there.

No rash. No history of tick bite. Of course doctors will send you on your way and probably not even test you. I was lucky that I had an astute PCP. I never had the EM rash either. They're finding now that in up to 70% of cases there is no rash. And I've never had arthritis, either. I have the neurological kind of Lyme disease where there is no arthritis. So a rheumatologist would be of no help to me. Even most neurologists are of no help to me. They're cluess about Lyme. So that's why I had to seek out a medical doctor who is specially trained in it, as you're grandmother probably had to do as well.

Sorry you felt the need to change the subject, when that is what I was PMing you about. This subject must strike a nerve for you having had so many close people in your life with the disease. It's a scary thought that it may have gotten you, too.

Good luck with managing each day. I know it's not easy!

***

Listen, I asked you to let it go, so let it. I don't need any more of your info on Lyme. You should respect my wishes. I understand you are trying to be helpful, and I thank you for that. But please stop trying to shove Lyme's disease down my throat. I tried being changing the subject, I tried being honest, and still, you persist. It's not that it "strikes a nerve" because so many people in my life have had it. I was tested, several doctors ruled it out, and if it's something I want to pursue, I'll talk to my doctor. Just because you think your FMS comes from lyme, doesn't mean mine did. That's my main thing: they don't know where FMS comes from. They don't know what causes it. It's all theory and speculation. They think it's probably from infection, genetic and/or trauma. My mother has it, so I got the genetic aspect, and i had trauma several months before FMS got bad. That's enough for me. So I ask you again, please no more messages about Lyme. I know I've crossed the line of rude and I apologize, but you pushed me to it.

Also, to me, you trying to convince me that it could be lyme, reminds me of people telling me the pain was in my head. You don't know my experiences or my body or my level of education/knowledge. Us FMS sufferers have already so much judgment and "quick-fixes" thrown at us, that we should be more receptive to each others feelings and reluctance. That is one thing we all have in common, our struggle, and the fact that everyone is an individual. Some of us are doing better on Lyrica/Savella/herbs/supplements, some hate it. Some can work, some can't. Some are young, some are older. We are all different and need to respect and support each others' choices of what is best for that person whether it be about diagnosis, treatment or cause.

Good luck and again, I'm sorry if I vented my frustrations on you.

***

There may be many causes to FMS of course. Since the tests for Lyme are faulty and inaccurate however, a negative test does not rule it out as the causative agent for your symptoms.

***

Maybe I'm being overly sensitive, and maybe I misinterrepted her tone. But to me, she came off as a total know it all. And that's just so immature and stupid because even the doctor's don't know diddly squat about FMS.

In not entirely different topic, I'm so sick and tired of people telling me what to do, and how to do it, and what to believe in and what to ignore. I am a grown woman. I have been on my own for years now. I have worked, lived on my own and supported myself since I was 19. Before that, I was working and finishing high school all while taking care of my ailing mother and dealing with my emotionally abusive sister. So please, stop treating me like an incaple infant. Yes, I've made mistake, and yes, I'll make more, but just because you're older doesn't mean you know what's better for me.

Part of this stems from going to see that new counselor. Her name is Gina. She, like most people I meet, assumed I was this punk ass kid on mommy and daddy's dime. And her eyebrows went a little further and further north as I explained my past and situation. She asked me a couple times how old I was, and then would try to compare me to her son, who is a year or two younger than me. And I wanted to scoff at her. She wasn't awful, but... I'm finding myself at odds with people in general lately.

Most people my age that I meet, I find them immature and overly dramatic. And then I meet older people, and I feel somewhat of a kinship but then hindered once they find out my age. Really what it comes down to is that I'm lonely. There are few people I feel understand me, and my time with them is so limited and infrequent.

I don't know. I miss my old counselor. Louis was so great. But I can't go back to him....

In other news, my nausea has come back. About 5-6 months ago, I started feeling nauseous. At first it was occasional and thne it came more frequently until it was all the time. After a few weeks of constant nausea, I went to a GP and he diagnosed me with GERD and gave me this medication, which was a godsend, but after about a month, the nausea came back, slowly, like the first time around despite the meds. So now I went to a gastro doc, and he's sending me for a Upper Endoscopy, but it has to be at the hospital because the hospital healthcare plan will charge me extra if I go anywhere else. (And some politians are crying a National Healthcare plan would take away our choices- what fucking choices?!)

And if that test comes back normal, we have to do this other test... I feel like a guinea pig. The gastro doc even said the Flexeril, my FMS med may be causing my stomach muscles to relax and be too slow to empty of food. So if that's the cause of it I have to find something else that will help with the muscle cramping and pain. Which means I have to find a new Rhuematologist because I can't use my old one anymore (insurance issues). I just can't win.

And it's not just medical. The program I want to go to for school, requires a class in the summer that runs from 6am-2:30pm. I work from 11pm to 7am. I just can't do it. How am I supposed to get a better job to make more money if the job I have gets in the way of going to school to get a degree to get a better job?

I cried on Rob again yesterday. I'm just so overwhelmed. And our conversation while I felt better when it was over, didn't have the best of tones, as it was about how uncertain the future is, between finances and school and my health. The saddest moment that sticks out in my mind:

Me: You're going to resent me for having to take care of me.
Him: No, I'm not
Me: Yes, you will. I just hope it's only for a short time and you remember again why you love me.

He was quiet after that, and just held me. I don't know if it was in acceptance or just letting me have my pity-party moment. But then he reminded me that he loves me and that I should never doubt it. I don't deserve someone so wonderful.

Other than all this doom and gloom and worry, I'm okay. Rob and I went to the 4H fair last night, which was fun. Then we came home and watched a movie, but I feel asleep halfway through. I'm excited about our coming time off together. Our plans are changing, unfortunately, but we do need to save money. The check engine light keeps going on in the car, and it being our only car, we need to keep it in running order. But as long as it's time together and away from work, I'll be happy.

Frustrated...

2009-08-09T18:52:47Z

Rob and I took PTO so we'd have a three day weekend. We originally planned to go to Space Farms Zoo and Museum on Saturday, and Sunday go to the movies or have some sort of date night and Monday just relax and chill before I had work that night. Last minute, his mom called and announced she would be up for the weekend. Now, don't get me wrong, I love Bonnie, she's a wonderful person and it's great to see her again. But, Saturday we ended up going over to the old house and getting more crap (mostly Rob's paintball stuff and the ab lounge); and going to a late lunch with his mom at 25 Burgers. Today, Bonnie left fairly early, around 10 am or so, so there was plenty of time for doing something. Instead, Rob declares that it's too crappy out and wants to go to the game store. Now Haffy is over and there nothing to do.

I understand he has hobbies and friends and stuff. But this was going to be our weekend to do stuff. And I told him Friday, that I wanted to do something with just the two of us or something romantic because we've kinda hit a rut.

It's not really Rob's fault. I haven't exactly voiced my displeasure, and that's because I don't know what I want to do. We're trying to save money, and it is kinda crappy out. So there isn't much to do.

It's more that I'm angry that I have nothing to do. I don't have any friends to hang with and I don't have any hobbies. I'm jealous and frustrated that I'm so bored and lonely. I mean, all week, all I do is go to work and stay home. I don't go out or see friends or anything. The most time I spend with another human being besides work is the cat...

I'm sick of it. And I understand Rob just wants to relax and hang, but he gets to go out and see friends during the week. I just need a little more variety, and unfortunately I'm very dependent on him for company because I don't have anyone else. It's sad, really. And I want to lay in my bed and cry some more...

Maybe with time...

2009-07-29T15:42:29Z

I was always amazed when I talked to my grandparents, and they would tell me these stories of their childhoods, because here I was, and I felt I couldn't remember anything before a few years ago.

But lately, more has been emerging. Like when we were building the house on New Road, and the only thing built was the basement, and it was flooded, so my parents borrowed these orange plastic trick-or-treating buckets we had form McDonald's, to bail it out. Or the sudden recollection of playing in the pool, and the summers with my cousin Kelly. Also the time I first got glasses. Mom, Melissa and I went, trying on a whole bunch of frames. Mom was no help, and I was only 8 (give or take a few years) so Melissa basically chose the glasses for me. But my amazement once I finally had them on my face. I could see the individual blades of grass, each leaf on the tree. Really, i didn't know they looked like that. I wonder if there is a reason that I didn't remember before, and any reason as to why I am now. Or it's simply time. I still don't remember a lot of high school, hardly anything from middle school, and I wonder if those too, will come back to me (do I even want them to?).

Of course, most of the memories I had are those forever singed in your mind. Like after the first time I cut my hair short, and I was so excited. All I wanted was to show it off. I ran to my father in the backyard, near the shed, and asked him how he liked my new hair. He replied "it's okay. I like girls with long hair". Ouch, Dad. Or the shame of getting caught not wearing my seat-belt (I only wanted to know what it felt like). Or the time I joined a softball team because I had these envisions of Dad helping me, teaching me. And how sad I was when night after night, he promised another time. Or how when I asked him how I did, he just gave me criticism. He told me I could run faster if I took longer strides. And I didn't know how to tell him I didn't want to run that way because my thighs rubbed together, and made my shorts bunch up between them. But even those memories where less vivid before, and now, they sting like new.

I'm going back to counseling. Work and FMS and everything has brought up all these feelings of inadequacy. Granted, I have gained some good memories (the ones of summer with my cousin), but even they are filled with a sense of longing. I miss her, and all I want right now, is another summer like that. Time is going too fast, but not fast enough...

Life would suck without you...

2009-07-14T11:47:54Z

Well after my last entry, I fell into a funk. I spent the majority of my Friday and Saturday on the couch feeling shitty and eating junk food. It wasn't until Saturday afternoon, that Rob (my absolutely wonderful boyfriend) came over to the couch and asked me what was wrong. I replied with the completely dishonest "nothing", so he continued to hold me until the walls came crashing down and I started to cry. And I continued to cry silently until I finally got the words out. I explained my recent frustrations and fears and how angry I was, and that because I don't know how to deal with anger, it turns into sadness.

He just held me, and let me talk it all out, cry it out, and when I was done, he told me he loved me, and to never doubt it, and even though life seems so hard, and seems impossible, we are gonna be okay; that he is here for me, and he wishes more than anything else, he could take this pain away.

Of course all this made me want to cry again, but not because I was sad or mad, but because I can't believe I've found this amazing man who loves me so much and knows exactly how to make me feel better when I'm down. There isn't a day that goes by that I don't sit and think about how lucky I am to have him. Because life would suck without him.

It will be our first anniversery in two weeks. That thought alone, makes me smile.

Mad as hell..

2009-07-12T03:17:03Z

I originally joined Daily Strength, this online support group, because I was becoming frustrated with the lack of understanding of friends and family regarding having Fibromyalgia. I figured it would be a good place to rant and complain and have a comraderie that I could not seem to find anywhere else.

But as the days continue, and I read the postings and the topics, I can't help but feel even more frustrated and concerned. I had no idea people were taking upwards of five medications- including narcotics, to manage their FM, that people can't get out of their homes, or work a full time job, or they loose their marriages and relationships over this disease.

And here I am. On no daily medications- only Flexeril and Aleve as needed, I work a full-time night-shift job that is somewhat physically tasking, I can exercise and go out with friends, I have a loving relationship with my boyfriend. Suddenly, I feel like a complete douche-bag for even wanting to rant and rave. Who cares if I'm in a little pain? Who cares if I have to give up a little to do something else? Compared to others here- who have this same condition, I'm okay, I'm doing fine- in fact, to some, I'm doing fantastic. What right do I have to complain?

So this place, that I thought would be a place I would find understanding and support has just managed to make me pissed with myself.

Then there's the 'what-if' game (as if I don't play it enough already). Like, what if I'm okay now because I'm still young? Will it only go downhill from here? What if the medications, the disability, the failed realtionships, the loneliness, the desparation, what if all these things are my future?

And more so, reading the forums and looking at the websites, it seems to become a fixation. I'm suddenly worrying more about my condition, concentrating more on the pain and the diagnosis. I find myself bringing it up in conversation, or thinking about it more and more. Trying to remember when the pain all started, figuring out what makes it worse, what makes it better, what I can do, what I can't do. I don't want it to consume me or my life. I don't want the support groups, the doctor's visits, the websites and the googling to become my hobby. I don't want my whole life to be about the fact that my brain probably doesn't work right, and the fact that it probably never will.

I makes me angry as hell. I never used to say I didn't want children until I was diagnosed with this. My mother has it. I have it. It may not be technically genetic, but who's to say any child of mine won't have it. Better yet, will I be able to raise them when I feel like this? Will my spouse resent me for not being able to do it all? Will I resent my children for not understanding? Or myself, for having to explain 'mommy's sick'? Will my children resent me because I won't be able to be the fun happy mom because I just can't hide the pain well enough?

Lord knows, I resented my mother for it. I resented her for how she would forget our birthdays, or sleep for days, or how I had to pick her up from her job because she was too dizzy and tired to work. Or how I would have to spend hours with her in the ER because she was in so much pain and no could tell her why. I even blamed her for dad leaving. I was clinically depressed for years, and even contemplated suicide because of the stress and the sadness and the pain. But I couldn't do- not because I was scared, or because I wanted to live, but rather because I felt that my mother needed me, I felt too guilty to leave her alone. And I resented her for that too. That I couldn't even kill myself because she was in the way.

Now I have fibromyalgia. And I don't want anyone to resent me the way I resented her. That's the thing about this disease- it will make you absolutely miserable. It can rob you of your energy, your job, your house, your relationships, and yet... it's not enough to kill you, or outwardly affect you. No one can see it. There's no medical bracelet, or ID card. There's no reason, no cure, no badge of honor.

As fibromyalgia sufferers, all we have is commiserating. Bitching. Anger. There's no gold star for surviving it. Hell, you say the word "fibromyalsia" and people roll their eyes. Pharmaceutical companies have turned us into a gimmick, the disease of the week. Remember a few years ago when they "discovered" Restless Leg Syndrome . It was everywhere- in magazines, in newspapers, on the News, on Oprah, everywhere. Before that was Chronic Fatigue Syndrome, and before that, something else. In a few years time, some other disease will take it's place.

Forgive me. I'm just angry. I'm not even going to blame it on the pain. That gets old, fast. And I'm tired. I wish I could go back to being blissfully unaware. But it was always there, the Fibro. I had 'growing pains' despite hardly gaining half an inch. A hike with the family or gym class was always exhausting. My bad would still hurt even after lying in bad all weekend. The constant aches and pains. I guess it was assumed it was part of being a premie (my twin and I were 2 months premature) or gallbladder disease or being overweight or my depression. Then I had my gallbladder removed, entered my 20s, found some happiness and I lost 60 pounds. But the aches and pains and tiredness was still there. And got worse.

I hate this disease, the uncertainty of its prognosis, this lemon that no matter how I try, will not make it into lemonade. I've always tried to look at the bright side, and with this, I just can't. What, be thankful for good days? Why can't I be like everyone else, and have most days as good days? Hell,most people don't even use that terminology- "good days" and "bad days", they're just days, that they just live life. Meanwhile, I'm lying on the couch wondering how many dishes can I wash without risking sapping my energy for the rest of the evening.

Simply, I'm mad as hell.

Hello!

2009-06-26T17:33:30Z

It's been a while- mostly to the fact that we were without internet for a week. *GASP* I know, I have no idea how we survived. Also, this past week I've done nothing but come home and crash for hours (usually in the double digits). I think it's because of this damn Tamiflu they put me on. Both Rob and I were exposed to Influenza A due to a patient at work. Fucking wonderful. And this Tamiflu crap they gave us is supposed to prevent you from getting the flu, but can cause mild flu-like symptoms. WTF? So I've been walking around like a zombie, mildly dizzy and with a constant headache. Thank you SMC, as if running around all night long doesn't fuck me up enough.

Besides hating this "miracle drug" (did you know the demand is so high(due to swine flu) it's behind lock and key across the nation, and by getting it free of charge, is pretty much unheard of), I'm pretty good. Rob and I moved into our new place June 13. We were both pretty apprehensive at first, excited, yes, but still apprehensive. We weren't entirely sure what it was gonna look like, and all these people were like "oh, noes! that's the bad part of town". But it's Somerville... how bad can the "bad" part of Somerville be? And now, two weeks later, we're settling happily, and the apprehension is lessening.

Warhammer, the cat, (yes, his name is Warhammer... don't ask, he's not my cat) cried the first few days, but now he's found a favorite sleeping spot- on our bed, preferably on my pillow. I'm, of course, mildly allergic to cats, and it's gotten so bad, that now I have to take my pillow off the bed and put it up high when I'm not sleeping. Other than that, he thoroughly enjoys the numerous toys I've gotten him, as well as the treats. I spoil him sometimes. I would do it more, except his nasty habit of waking me by running and jumping on my head, waking me up, or interrupting 'private time' by crying at the door because we locked him out, or worse, interrupting 'private time' by joining us on the bed and watching (pervy cat). Or trying to steal food of our plates when your back is turned. Or stealing my hair things to play with (as if he didn't have enough toys). Actually he is annoying the majority of the time he's in our presence. SO much so, you almost hate him. That is until he comes over and jumps on my lap and after much to do, settles down and I can't help but find myself petting him, and enjoying his little warm body purring. Or when he comes out of whatever hiding place he's found himself in to greet me when I come home from work. Or his cute little body curled up on the bed, that stretches hello when you roll over and find him as your bed-mate. And then I love him again. I do believe this is much like having a child, only slighter better/easier.

*WARNING* Squee moment about to engage. You have been warned.

The other night, Rob and I were sitting on the couch, cuddling in front of the TV. I was dozing off, and Rob nudges me and says "Look, it's the whole family" and motions down. Warhammer had settled himself across our laps, and there we were, the three of us, a family. It just filled me up, and I felt really really happy and content, and I turned to Rob and said "Aww... You make me so happy" and we exchange 'I love you"s and a kiss. And after a few moments of returning to our cuddling position, I say "You know, if I weren't so tired, I'd totally do you" HAHA. At least the sentiment was there. Even more funny, his reply with a sigh "I know" Don't worry. He got his in the morning.

Ironically enough, I find myself watching a lot of wedding shows. Now, don't think that I'm ready to run to the alter, I mean, our one year anniversary is only next month. But, I guess I like the idea of it, the idea of us getting married. And I'd like to think that it heads that way. I wonder if he knows. Actually this morning, he was telling me about how he was talking to Jason, and Jason was talking about this and that and then about how Jason asked when we were getting married. Rob threw in his response "It's not the immediate future" or some other vague answer, and then Jason's joke of "Good. Don't do it. I love Sara, she's great, but don't do it" (His marriage is a little shaky at the moment). Maybe I'm just being a girl and reading too much into it. This is why I need more girlfriends.

As for marriage, I do want that level of commitment- not right away, but maybe engagement. It's probably my fear that he'll leave me, you know, my abandonment issues in general. But I think I'm leaning towards wanting that because an engagement is a promise to marry, not today, but one day. And now a days, boyfriend/girlfriend, it's so... thrown around. I feel like when I say, "This is my boyfriend, Rob" or when I call him my boyfriend, it's not that substantial. I almost want people to know how much he means to me simply by the title. I want people to know I've found this amazing wonderful person that I love and I do, at this moment, believe I could spend the rest of my life with him. There should be an in-between word. One between boyfriend and fiance.

I know it shouldn't matter what people think, that as long as we're happy, it's okay. But that's kindergarten talk. It does matter. It will always matter. Reality is at least 50% perception. And perception is there for a reason. It's a gauge. It's a way to interpret things around us in split seconds. People will always make assumptions, and will always have perceptions. The truth is only what we perceive as the truth. Many I'm caring a little too much. But I've dealt with so many bad perceptions people have had of me, that is it so bad that I want people to know this one thing? To know how happy I am?

Also, I want to know where we stand, in concrete terms, because I do fear (however irrational it may be) that he'll get tired of my Fibro Myalgia, or my annoying habits, or whatever- basically, I'm afraid he'll get sick of me, that he'll want out, and we'll be unhappy until we can part ways (I'm not breaking another lease, goddamnit), or worse, we'll be in a limbo for years because we're both too goddamn nice and polite to say anything. I don't mind commitment. I actually crave it, but mostly in a certain concrete way because I've misinterpreted people before. When that happened in the past, I started to expect more than they ever meant to give, and I got hurt. I let myself get hopeful and that usually ends in tears for me. And I can feel myself getting hopeful- hell I'm more hopeful right now than I've ever been. So I'm afraid of the expected failure. Cause and effect. If a certain outcome happens enough, you begin to expect it.

I know I should just voice these fears to him. Again, I'm afraid his response will be, "holy crap, this chick is batshit crazy, what did I get myself into?" Again, totally irrational. See the running trend here? So how to begin, if I were to tell him about all this? "Hon, where do you see us in five years?" Seriously, sounds like a bad interview question. And really what good would it do? He thinks I'm crazy, or thinks I want to get married next week, or whatever. I should stop this merri-go-round before I start up again.

Despite all this banter and ranting about my retarded insecurities, I'm happy. Well, as happy as I'll ever let myself be. And that will be good enough for now.

Pain!

2009-06-06T21:32:39Z

Well.. I should have taken a smaller baby-step before I actually jogged at all. I am still in tremendous pain. But even a small walk in a couple days would be good, help me sleep etc. I just forgot that old saying, you know "You have to crawl before you walk, and walk before you run" type thing. I just tried to run, and now I'm stuck crawling for the next few days.

I can't believe we're moving in a week. I'm super excited, but dreading all the work and inevitable pain involved with it.

I actually exercised...

2009-06-05T16:47:25Z

I don't know what hit me today, but at work I kept thinking about how great it would be to go on a walk. That I'd drive home, change into sweats and go for a jog/walk, let Rob sleep in and them come home and have breakfast, coffee etc. Well, it didn't go quite as planned, as Rob was awake when I got home and it was raining, but I went anyway.

The rain was cold, my pants were too big, I could feel every flap of flab as I jogged, my lungs burned, and my legs hurt so bad I'm comtemplating amputation as a viable option. But I enjoyed it. I want to go again tomorrow (I will probably recant that statement in the morning). And after we move into our new place, I want to join the Y. It's time I take care of myself, eat better and get some exercise. Besides, there's all this research showing that mild to moderate exercise can help with Fibro myalgia.

In addition to this new found healthy approach, I'm finding I'm going "green"- now don't worry, it's just a little, I'm not a compete hippie. I've jsut been reading articles and trying to be a little more energy efficient. I think part of it is knowing the electric bill is to be paid by just Rob and I, and I want to save money for school, new car, etc. So ultimately, I'm trying to save money.

Hopefully I can keep this up. It'd be nice to tighten the loose skin from loosing all that weight (60lbs from my heaviest). Wish me luck!

Grey's Anatomy

2009-05-15T18:11:24Z

The season finale made me cry. Actually, several recent episodes have made me cry. The themes of family and friends and death and dying- the process of the body slowly going as friends and family have to deal with this big empty hole that was once your life. I see so much of it. And it scares the shit out of me.

Last night, before I left for work, Rob turned to me and said "Be careful," like he was afraid I was going to get hurt. I asked him what he meant this morning when I got home. He said it sometimes scared him- me working with needles and people with possible bloodbourne pathogens.

I guess that's where this really steams from. Before meeting Rob and falling in love, future health didn't pay too much concern. But now, I'm afraid of not having enough time with him, of loosing him, or something happening to either one of us. That is why humans need companionship- so that they have a reason to want to be. It's selfish too. I want all the time in the world with him. I want him healthy and safe, to be with me, healthy and safe, forever and forever.

However, especially working in the medical field, you know forever is ridiculous, and it doesn't exist. And in turn, begin to fear the inevitable end.

galiger @ 2009-05-13T10:04:00

2009-05-13T14:41:43Z

It's becoming incredibly clear, I have no friends. I have acquaintances and people I know, but friends? People who wanna hang on weekends, or people I can count on when I've had a bad day or someone to simply go shopping with or have a cup of coffee. I have Rob. But I can't rely on him always. It will get boring and get old. And it makes me so unbelievably unhappy.

It gets me to thinking it only a matter of time before things with Rob will go sour as well- the thought of "why not? everything else goes bad, everyone else has left me" And that has to be the most disheartening thought I could ever have. It was nothing to do with our relationship- rather it's the blanket feeling of betrayal and mistrust. I mean, how long before he gets sick of me being sad and lonely. And the more depressed I feel, the less libido I have, and then I feel guilty because I love Rob, I am in love with Rob, so I should want to have sex with him but I don't feel like and I don't quite understand why. And it makes me double guess myself, and right now, the last thing I need is more uncertainty.

Why? It never hurt this bad before- loosing friends- Kelly Y, Katie, Emily, Joe, Adam, Mel... I mean, it hurt, but never like this, this deep ache of loneliness. Why does it hurt so bad this time? Cause it was two as once? Cause it was the last two friends I had? Or because I know that with my night shift job and lack of hobbies mean I probably never get another chance to make new friends again?

I'm so lonely. Even Rob couldn't bring me out of my mood. I feel bad. He's so sweet and tries so hard. I wish I could be happier for him. Hell, I wish I could be happier for myself.

Am I an awful person?

2009-05-02T17:49:32Z

I must be. Why else would the two people I considered my closest friends decide to not talk to me. To never return my calls or messages. And it's not even like they are co-conspirators. They don't even know one another. But WTF?!

Twice now in the past month, Cortnee has been off with her other friend, Kristen, whenever I call. It's cool, she's allowed to hang with other people, I don't care about that, but it's strange because she used to tell me how her and Kristen don't get along, they grew apart, this that and the other thing. Yet, she spends all this time with supposed fading friend, and can't even pick up the fucking phone and call me. The only reason I knew she's with Kristen is because I had to call Cortnee's mom to make sure she was okay, cause I hadn't heard from her in weeks, maybe months. Yes, I'm jealous. Mostly, I'm hurt. And I wonder, is it something I did? Am I in the wrong somehow?

And Kelly... I haven't been able to get any kind of contact from her since that last Facebook message I wrote about in my last entry. I've called, I've emailed, I even wrote a physical letter.

What's wrong with me? Do I pick bad people? Do I do things to drive them away? I know I'm not available often because I work nights, but I have every fucking weekend off. Hell, I started planning this big night out for last night to celebrate my fresh start- living here with Rob. I invited a bunch of people from work, and last minute, people are like "oh, yeah, we were gonna get together to celebrate for Felix's birthday that ngiht anyway, you should come". So my little celebration, fun night, it was so-so. And it's a circle of people I know, and I told them now that I'm 21, let me know when they are all going out, that I'd like to come along. But nothing, for four months until I try to start something, then it's like, 'oh yeah, you can come." It sucks.

It really hit me the other day when I realized I really need to go clothes shopping. I realized I had no one, absolutely, no girl friends to go with. My options are either drag Rob along, or go shopping by myself. What's the point of shopping if you don't have girl friends to chat with and share opinions about clothes? It's no fun.

I sent Rob off to the games store so he could hang out and do his thing. I was hoping I'd be able to meet up with Cortnee and make things better. Instead, I'm home alone, crying, and all I want is for Rob to come home and hold me and make things better. But I don't want to bother him, he never gets to go do his Warhammer stuff anymore- he's always spending time with me or working. I know he'll feel bad if he gets home and finds me like this. Let's hope I can buck up and stop this pity party.

galiger @ 2009-04-19T06:39:00

2009-04-19T11:15:39Z

Yesterday was a rough day. Rob and I drove down to my apartment to clean up and throw some shit out, only to find Julius had thrown another party. There were cups and beer bottles everywhere, strobe lights and shit. And he hadn't done a thing I asked him to. Of course he wasn't there, so I left an extremely angry voice mail on his phone. I'm assuming he's avoiding my phone calls.

I tried to call Kelly and she if she wanted the things left there. First time I tried, there was a hang up. The second time, it went to voice mail. I was trying to figure out why she too was avoiding me (more on that later). Finally I get a hold of David, and even he seems annoyed and doesn't give a shit. He's supposed to stop by the apartment today.

So after taking a bunch of stuff to the trash (including anything that encouraged a party- strobe lights, ash trays, playing cards, etc) Rob and I headed home. I went to check my email only to find a message on Facebook from Kelly, left the day before. And it said:

"I finally got access to a computer. In case you didn't notice, we've moved. I guess I'll talk to you later, if you're not too busy for me."

So I guess she thought I was responding to her message and being too cowardly to answer the phone. So I replied:

"I know you moved. And if you haven't noticed you've been too busy for me for a long time. I tried to hang out and keep in touch, but it was almost impossible. You were always working or with David or sleeping. I've missed you for months. Even though I was busy, I tried to reach out to you again and again and it never worked. And after a while, I gave up. And I'm sorry for that, but don't push it all on me.

I understand if you're upset about the whole situation with the apartment. But neither you or David were willing to help or make any kind of decision, not to mention the extra stress of dealing with Julius. What else was I supposed to do? It was left on my, to pay for the rent, to come up with a plan. So I did what I had to do. David kept telling me you guys were fine, that you were going somewhere. DO you have any idea how shitty I felt when I found out you guys were separated? So I'm sorry, and I do miss you. You were (and I hope you still are) my best friend."

I posted that last night. Obviously there's no response yet. Oh and Meagan had made this ridiculous comment on Kelly's post:

"BURN!!!"

Like what the fuck? I cannot spend time with Meagan anymore. All she does is shit all over me time and time again. She acts like she doesn't believe me when I say I want to go back to school, she calls my boyfriend doofy and tells me how her's is better. She calls me lame and a dork at every chance. And I can't take it.

Family is supposed to be there for you no matter what. Cause in the end, who do you have left? Family. My family loves to preach this, how oh they're all about family, and they dn't have friends outside family, cause who needs friends when you have family. Well not me. Meagan does nothing but belittle me, Melissa is full of backhanded remarks and advice given after-the-fact. And my mother, I love her, but she's a parrot. If she hears too much of what Meagan or Melissa have to say, she repeats it. She has no fucking standing or opinion on her own.

I wish I could be like Rich, and just walk away without any kind of retribution or retaliation. But I have a feeling that if I walk away they'll treat me just like Dad. They'll hate me. And I'll never hear the end of it. So I'm back to feeling so very alone.

Maybe not....

2009-04-16T15:28:02Z

I know my last entry was about how I wanted to go to a counselor and shit. But then I talked to Rob about it. And he was supportive- concerned, but supportive. I've thought more on it and now, as I reread the entry, I don't feel so bad. I mean it sucks how I don't have close friends, but really how hard have I tried? I have options. Sue, Yuriy's wife, wants to get together sometime. I could always call and see if Evelyn and Melinda want to hang out. And really, going to a counselor's, and spending more time in my head and feeling sorry for myself won't help.

That and my period came the day after the entry, so I'm beginning to assume it was PMS at it's worst. Plus Rob and I looked at this great apartment, and I'm super excited. With an apartment of our own, I can invite people over and have dinner parties (oh I kinda hate that term for it, it sounds so retarded yuppy). I'm just excited to be creating a life- without roommates, without the commute, and with someone I really love. I should be more grateful for the good things in my life. So, I might not have a multitude of people to share it with, but I have Rob, and I have my family (most of the time, I think), and friends will come, they always have.

So I'm not alone and I'm not crazy. It's been a while since I've been able to say those things and mean it. So I'm okay, and even if I'm not, I will be.

Looking for a counselor...

2009-04-12T14:40:34Z

Well, I've decided it's time to go to a therapist/counselor again. My last entry was really a catalyst. I realize now that it's not because I'm a bad person or untrustworthy that I cannot make meaningful connections and relationships with people or I pick bad people to be friends with, rather, it's because I feel I cannot trust anyone. I try to think back to all the friendships I've had and how/why they floundered. Each one ended because there was a certain level of betrayal or mistrust. Kelly Y, Joe,  Cousin Kelly, Adam, Julius, even Cortnee. And it's not secluded to friends. Family too. My father, my mother, my sisters. Pretty much everyone (besides Rob) that I've reached out to, has let me down. Of course this leaves me wondering how long before even Rob does it too. And I can't have those kinds of thoughts if I want to continue, and keep a stable relationship with him or create any kind of friendship with anyone else.

So I need to work out my trust issues.   And it may not even be just trust issues. It may start with heightened expectation. My expectations may be too high and I simply set myself up for disappointment and failure; therefore increasing my lack of trust in other people. And I don't plan on children. So who will I have when I'm older? Family and friends. And the older you get, the harder it is to make friends. So if I don't start the path of making meaningful friendship now, it's only a matter of time before I'm completely isolated.

I can't do it alone, but I can't lean on Rob for it either. So I'm gonna write down a few numbers and make a few calls tomorrow.   I want to be a better person. I want to have a full and happy life. I'm not naive. I know life isn't easy, and the road ahead will be long and hard, but the people I meet along the way should not be the source of so much anguish. It's supposed to be the people and family and friends that make it all worth while. So it's time I try and open myself to more possibilities. And hopefully counseling will help.

Lonely, I'm so lonely.

2009-04-09T16:21:36Z

I need something. I'm lonely. Don't get me wrong, I love Rob and he's great- he's not only my boyfriend, but my best friend. And without him I'd be so far worse, it's not even imaginable. Despite that, I'm lonely.

I don't have any friends anymore... It's been weeks since I last heard from Cortnee, months since I've talked to Kelly- who I fucking lived with. My friends from work, well, we work different shifts now, and besides a few moments in passing, I don't see them either. Sunday through Thursday, I work all night, have a few moments with Rob before he goes to work, sleep, get up, go to work and the cycle continues. Weekends, well, Friday, I sleep most the day and if I don't, I'm cranky. So I have Saturday. But then I look around, and there's no one to turn to. Who do I call? Who wants to hear about my busy job? Hell, I feel like I can't even talk about the good things in my life- mainly Rob and moving. Like last night, at work. We were having a lull in work, so I went outside for a cigarette and I was feeling lonely and a little restless, so I called my sister. Calling Meagan was a stupid move, I know that, but I told myself I did it because she was the only person I knew was awake.

I couldn't have made a worse choice. I was trying to update her on my life, and let her know how things were and she didn't want to hear it. None of it. Even when I meantioned I wanted to go back to school, she said "Really?!" as if she didn't think I could do it. That hurt like hell. She calls Rob doofy, she belittles me and my choices, and yet she's the only person I have to turn to when I'm feeling lonely? What the fuck?

I don't even have my mom anymore. I call her and she can't listen. She's too distracted by the kids. She doesn't seem to care. Half the time I spend waiting for her to finishing yelling at the kids or answering their questions. At least half our conversations are interruptions. And I miss her.

And when I am around people, usually Rob's mom or friends, and I feel myself just grasping at the straws of human connection. And then I feel worse, like they can sense how needy I am, and how pathetic it is.

And I guess a lot of this is because Rob is working this weekend, and I can't think of a damn thing to do (besides move more shit from my apartment). And I probably try to call Cortnee or Kelly, or some other people, but... I don't think anything will come of it. And I don't know if it's because I won't try hard enough or their not interested or what. I think part of me is afraid. I've been hurt and betrayed so fucking much, that to let anyone in- it's terrifying.

Even Rob, I know I hold him at arm's length. I don't think he (nor I) realize how far it really is. I may even be so good at it, he may not realize at all. I've realized I try too hard to please and to be a good girlfriend, simply out of fear that if he disapproves, he'll leave. I know it's irrational, but I don't know how to change it, or if I should even try. I'm afraid I'll become a chameleon- someone who changes according to the needs of those around them and loose all sense of self. Don't misunderstand. I am more myself with him than with anyone, but is that really saying much?

And right now? All I want is for him to be home, so I can tell him all of this, and cry in his arms, tell him I'm lonely and I need him and I love him and much better I feel when he's there. I guess that's something.

Feeling defective...

2009-03-20T18:18:19Z

I don't know if I've ever truly ranted and raved about my health, and it's deterioration. And right now, I need to.

In the past year, I've been diagnosed with fibro myalgia, mild segmental levoscholiosis of my lumbar spine, TMJ disorder (which may be part of/caused by the fibro); my adult canine teeth are impacted in my upper jaw and pressing on my sinuses, causing pain and headaches. I am in pain all the time. I can't remember what it's like to not hurt, to be pain free.   I have to pee all the time, I have to actively look for bathrooms when I go places. I'm tired all the time. And how long will my friends and family stand by me and listen to my complaints and issues before they get tired of it?   How long before I can't work a full time job anymore because of the pain?   How long until I can't take it anymore? How long before I can't stand the ridicule and disbelief of the diagnosis of Fibro Myalsia? There's no true treatment, no cure, hell, some doctors don't even think it's a credible disease.

And how long before I become my mother? She can't function to work, and had to go on disability. She goes in a fog and can't accommplish anything. She can hardly hear, making many social situations difficult and friendships strained. She often wears adult diapers, and has peed herself on numorous occasions. I love her, but when I see her, and all I see is my damnation. She's alone. I want to do more than she did. I'm not the type to be satified with a couple kids and that's it. I don't even want kids- particially because I don't want to pass this on. I want a career, I want to go to school, I want to travel, and have hobbies, and pets. I want to grow old with someone I love.   I don't want to be held back and decrepit before my time. Already, I'm so limited. Add aging, and I'm fucked.

And yeah, there are many people worse off. I could have an aggressive deteriorating disease, something fatal or disfiguring. But somehow, I feel this is almost more frustrating. It's not like I have to come to terms with mortality or being different, hell, not even truly disabled. Instead, I have to deal with pain- constant pain without rhyme or reason. How do you cope with that? All the time I feel it's: "Sorry... I'm cranky... I'm in pain... it's from this disorder Fibro myalsia... Oh, you heard of it... yes, it's a real disease... no, they don't know why it happens... no, they don't know how it happens... no, it's not in my head... no medication don't help..." I just feel so frustrated and hopeless.

Like right now... I need to stop writing soon and move. My hips ache, and sitting here is only making it worse. And I have to move out of my apartment, and all I can think is can I do it? Can I physically do everything i need to do to make this happen? And I doubt I do. I doubt myself and my abilities, and that hurts like hell. Cause even when I was a fat kid, and I couldn't run fast or do well at sport or coordination, I knew, I could lift that box and move this and that, and I knew my body was strong and capable or a hard day's work.   I am and no longer will be self-sufficiant. God forbid I ever get a flat and can't get Triple A. I can't change that tire.

I'm becoming this helpless woman, who can't do the "man's work" if I need to. I always used to be able to do the "man's work". Like now, (almost) living with Rob. I need him to do heavy lifting, and to take out the garbage, and carry groceries. Hell, sometimes, I've needed him to carry my (overnight) bag up the stairs. And it's not that it's just because he's around and that's how he helps, it's because I'm in too much pain or I physically can't. Even if I could physically handle it and I'm not in too much pain, I still can't, because I know if I do those things, my pain will increase tenfold. I constantly play this "what-if" game. What consequenses will there be if I carry this up the stairs? What will my pain become if I walk to the bathroom on the cold floor without shoes? Will my bones ache if I open the door to get the mail without a coat? If I fall sleep in Rob's arms a certain way, will my body make me regret it in the morning? If I go food shopping, will I have the energy to make dinner? If I don't go to the bathroom now, will there be an available bathroom later? I'm trying to constantly make conscious decisions to have the best outcome and still I am always in some level of pain.

Worse part is, as of right now, there is not much they can do for me. RIght now the FDA has two drugs approved for FM treatment: Lyrica and Cymbalta. Lyrica has serious side effects and is often discouraged unless one is unable to function without them. And as of right now, as hard as it is, the benefits ofit would most likely not outway the side effects, (besides the side effects would most likely have a detrimental effect on my job). And Cymbalta is actually an anti-depressant, and after four years of Zoloft, and knowing I'd be dealing with the inital dampened emotions, lack of sex-drive, possible suicidal thoughts, I refuse to take it. Besides, taking a antidepressant when I'm not even depressed it like I'm aggreeing that it's all in my head. But then again, how can you expect them to have treatment options when they don't even know how the disease works?

As for the TMJ, I'm just finding out about that (after a dental xray gone horribly wrong). I went in because of some tooth/jaw pain. They went to put this thing in my mouth, way in the back and the pain of opening my jaw that wide was excruisiating. I actually started to cry. It was so freakin embarassing. They found another way to do the xray, but now I have to explore that issue.

Anyway.... yeah... I'm a boat load of defects. I know I didn't explain everything, but I'm getting tired and my hip is killing me. It's time to take a rest.