Monday, October 31, 2011

Halloween 2011

So lets talk about why this Halloween completely sucked for me.

1. I was so excited about being a cat goddess... then came to find not only did the dress make me look even fatter than I already am, but all the photos of me turned out horrible because I'm basically a huge, fat, disgusting mess.

2. I sucked at making our Sahmain ritual.

3. I left my grandma's photo at Fionna's.

4. Nightmares. I had a dream last night that Ash told me that I'm disgusting and huge and it's all my fault because I'm a lazy bitch..

So now I'm just thinking of telling him he might as well apologize to his mother, because she was right. I've ballooned up.

And I don't know that I can get married like this. I'll hate my photos forever.

Wednesday, October 26, 2011

The common cold

Sorry I've been kind of MIA lately. Asher and I both caught the cold that is going around, and it's HORRIBLE. I got in on Thursday, and I'm STILL sick.

Sunday, October 16, 2011

I see you

I think one of the hardest parts about having chronic problems/illnesses, for me personally, is when people can see it. When other people are able to see something is going on. And that's funny because it can be so frustrating for people to use "but you don't look sick!" against you, but for some reason it really bothers me.

I like to be able to keep people from seeing it. I don't want the people in my everyday life seeing that I'm in pain or that something is wrong. And now multiple people are seeing a change in my responses (the emotional side of it all), and it bothers me.

Saturday, October 15, 2011

Do you let it stop you from living, or do you just give into it and whither away?

 I never let it get to that point because it seems like once you step beyond that line, it's hard to go back. I have times where I have to remind myself what I need to do, and why it's worth it to keep going. I think you really have to be proactive about chugging along because it's easy to just want to quit. So I tell myself it's time to get up and go do something. It's time to work on wedding stuff. It's time to work out. There's still a life to life.


What kinds of things make it easier for you to manage/cope/deal with the pain?

 My family, definitely. Being able to sit and chat and laugh with Asher or with my mom makes it a little more bearable. The cats help a lot too. It's nice to have that unconditional love when you're having a bad day. They know instantly and come up to give me love. Watching comedy, writing, and just thinking of other things. 


And when all else fails, sleep.

Friday, October 14, 2011

To kill a rheumatologist

I got the paperwork for my new rheumatologist today. As is Cleveland Clinic custom, I have plenty of papers to fill out before I actually see the doctor. And looking at the paperwork is making me anxious. Not because I can't fill it out, but because this is such a huge step... I haven't had a doctor for my actual fibro all by itself since I saw Pellegrino and it all went wrong.

To recap: Pellegrino told me I was not getting better because I wanted the money from social security. Obviously it couldn't be that his methods weren't working, but that I was purposely refusing to get better. And I'm quoting that last part of the sentence. He then stormed out on me in the middle of the appointment with no order to see me again. When we asked for my medical records, all he sent were his appointment notes also stating that I was refusing to get better.

I've seen plenty of pain doctors since then, but not a rheumatologist. And I'm so scared that I'm going to see this doctor and he's going to say the same thing. It's completely irrational, I know, but I can't shake it. I look at this paperwork and I just feel complete and utter terror.

So how do I kill these ghosts?

Even more questions

How have your cats influenced your health? Both the good and bad ways.

 I guess I'll start with the bad. They affect my sleep a lot. Daisy more than Bug and Rhapsody. She's still a kitten so she's getting into everything. She likes to play with things on the bed, make  lots of noise, play with the blinds. Sometimes I try to kick her out of the room, but that doesn't always help because then she'll attack the door. Less sleep equals more pain. 

Cuddling sometimes can have bad reactions too because I'll end up in one position for a long time, and then when I finally get a chance to spread out, it's horrible.

But they also do a lot of good for me. They always seem to know when I'm upset, and they come up for pets and cuddles and love when I am. They help ease my depression, make me realize there are still good things to look forward to. And they give unconditional love. They're also a good distraction technique. I can sit there watching them play with Asher and I forget entirely that I was just in pain, or that I wasn't feeling well.

And they have stopped me from trying to commit suicides many times. I stop and think about them trying to wake me up and it breaks my heart. I can't do that to them.


All in all, the good far outweighs the bad.

Happy birthday Grandma

Yesterday was a very hard day emotionally. It would have been my grandma's 91st birthday. It's still a struggle to be without her. Knowing that she isn't a phone call away, that she can't be there to see everything going on. It's heartbreaking. I just want her back so badly.

And I want her to be proud of me, but I feel like I'm failing her on that end. What am I doing that is good, that is worthwhile?

Thursday, October 13, 2011

A harder question

What do you say to people that think it isn't real?
 I'm of the belief that if someone doesn't believe something is real, and they don't want to, no amount of arguing with them is going to change that. All it's going to end up doing is upsetting me and they'll still be pretty damn smug in their assumptions. I will say that I know differently, and that we're done with the conversation. This would also be my cue to end the relationship completely, and I don't care who it is. If my mom told me I'm lying and there is no such thing as fibromyalgia, no matter how close we are, I'd be done.

When you have it, then you can talk to me about how real it is. Until then, get the fuck out.

I have had one doctor so far that told me that he didn't believe fibromyalgia was a real disease. And if it was, it wouldn't be as widespread as he's seen it (let's ignore the fact he was a migraine specialist, and that migraines and fibro go hand in hand and no wonder 75% of the women in his office have both.....) That was my last appointment with him.

Unfortunately, there really isn't a good answer for this question, because it's always going to come from someplace different for each person, and not everyone is going to be as quick to be done as me. Some people get it from friends, some from family, some from doctors. Even if you choose not to engage, it still hurts. How could people think that something so difficult and so widespread is all a lie?

While leads into 2 other questions asked, so I'll include them.

I would ask how others treat you (friends and family). I have a good friend who has fibromyalgia. Her family thinks she uses it as an excuse to get out of doing things (housework, job etc...). Do people treat you that way or do you get a lot of support?

 It's definitely a mixture. 


My closest friends treat it as I think it should be treated: It's there, it's real, support her to do what she can, but be ready for when she can't. For example, in my coven (they're like family to me), they are willing to do anything to get it so I can be included in activities. Say they want to do a nature hike. Fionna has told me time and time again, she will let me walk as much as I can, and then come hell or high water, they will get me through the rest of that hike even if they have to all push the wheelchair. 


My close family is the same way (like my mom and step dad, Asher, my cousin Sara, etc).


Most of my family (aunts, cousins, uncles, etc) don't really want to hear about it. They don't really care. Which can be very hurtful. I've gone back and forth multiple times with my mom about how certain family members just don't care what happens to me, and how it hurts to know they don't love me. And mom tries to show me examples of how they do love me, and with some of them I do sway on whether I think they love me.


I, luckily, have actually come across very few who extend the type of treatment your friend is going through. One was a doctor; my first fibromyalgia doctor. He told me that I was the one that was refusing to get better because I wanted money from disability. It thanks to him that I don't have a doctor specifically for fibro right now, and why I am so afraid to see this new rheumatologist at Cleveland Clinic. What if the new doctor thinks the same thing about me?


And then there is Asher's mom... Apparently there was a lot of shit talking when I had to finally give in and quit school. Her and his great aunt have it in their head that I'm using it to be lazy and to mooch off my fiance. His aunt has actually asked him about it. "What is wrong with her? Why doesn't she work? You need two incomes coming in!" She does it in such a way that you can't really go off on her, but you know what she is trying to say...

Do you feel that others around you (including friends, family, acquaintances, strangers) have a good understanding of and respect for your disability?

For the most part, no. Very few know exactly what I go through, and what it all entails. Only really my mom and my fiance have done research for it, and know better than anyone what I can do, what I can't do, the disappointments, the setbacks.

I think for the most part, people are respectful about it, but they don't have a good understanding because they don't put the effort in to truly understand it.

Now don't get me wrong, though. I don't hold that against people. All I really need for my friends to understand is that I'm not snubbing them or being rude if I can't make it to something because I get sick. And I still battle with that because too many people take it personally instead of what it really is: a body that is sick.

Maybe one day they will have a really good understanding of it. But I'm fine with it.

Wednesday, October 12, 2011

Question time!

I'm still trying to decide whether I want to do just one question a post or a couple. I guess it depends on the mood I'm in.


What forms of alternative medicine have u tried?

 If this includes things like vitamins, then I have tried a few. But I haven't tried anything beyond vitamins. I take things like B12, B-2 (for migraine), CO-Q-10 (for migraine), Vitamin D, Fibercon, and magnesium. Now I take salt pills. One of my pain doctors wants me to try acupuncture, but I'm not entirely sure yet... It kind of freaks me out, and I have to get a specific type of doctor for my insurance to accept it. It can't just be someone who does oriental medicine or my insurance won't pay. But that's really about it.


What do you do to cope with your Pain from a mental stand point?

 I do meditation a lot. I'm actually able to go into a trance form really fast now. It's kind of like there is a switch in my brain that I hit and I go into meditation form. I also try and talk to myself a lot. Like I try to tell myself "you can do this" or "just another hour and we're done with this and it will be okay." And if it's really bad, I try and work on my stories. I can disappear for hours into my stories if I want to. I'll draw a hot bath, and just disappear into my mind.

Chronic pain really does a number to you mentally. There are days I think "I can't do this" or that I'm just going to break.There are days where it just seems like too much and how am I going to live years and years like this when I can't even get through one day? 

I also try to laugh a lot. I watch videos online, I look at cat photos, I watch comedy routines. I can escape in that.

Tuesday, October 11, 2011

Questions

If you had one question you could ask me about living with chronic pain/fibromyalgia/being a pain patient, what would you ask? (Each question will end up getting it's own post with my answer).

Thursday, October 6, 2011

Depression hurts

With medication changes can come a lot of issues. I really do think at this point it was the Abilify causing the weight gain. It's the last one I went off of, the last one to get out of the system, and it was only then that appetite changes started.

The problem is that to be completely fair, I know the Abilify was helping. So going off of it is kind of hard. I'm starting to get affected by it. I've had times when it feels really hard to just keep going. I've had some panic attacks. I've had days I don't want to go out and do anything because what's the point?

I don't really know what I'm going to do. I am starting to lose weight finally. So I might be willing to add on another antidepressant like I used to take, but I'm not sure. I need to talk to my doctor...