Officially a fan

This thing is brilliant and didn't hurt at all!!

Sunny Days at the YMCA

Today was Thursday.  It was the second day of vacation camp and hot as hell.  Basically Satan called, and he’d like his weather back.  I am sweaty, sunburned, filthy, exhausted and happier than I have been in a long time! 

I just feel so productive.  This is my element.  I’m at a camp, running great program for kids.  I’m keeping them safe in the 95 degree weather.  One girl told her mom I was the “sunscreen natzi” and just kept making her put on the sunscreen.  I must have uttered the phrases, “put on more sunscreen before you go outside,” and “drink some more water,” at least a million times today.

Now, the MS and heat thing is a bit of a problem, but I was more proactive about it today than I have been before.  I had my cooling wrap since the wee hours of the day.  I put my vest on by 9am.  We went swimming from 2-4pm, and I jumped in and out 5 times during that time frame. 

I’m happy.  I feel good.  I feel productive.  MS is not going to win…today anyway.

Summer!

Friendly's has a new sundae! You get to take home the dish :)

thoughts of the day

101 Things to Do to Keep Myself Productively Occupied

1. Cafe World
2. Coloring
3. Puzzles
4. Reading sappy books
5. Finally putting away laundry
6. Scrapbooking my sisters wedding
7. Dishes
8. Recipe sorting
9. Finding inspiration stories for training
10. Adding to "Little Nothing Book"
11. Solitaire - with real cards
12. Working Out
13. Organizing Junk Drawer
14. Cleaning closet
15. Shopping for new stuff to put in the cleaned out closet
16. Writing a long blog post
17. Writing letters to old friends
18. Cooking new recipes
19. Cleaning under fridge
20. Cleaning under stove
21. Gardening
22. Hiking
23. Recycling cans
24. Organizing shoes
25. Sing
26. Shower
27. Sing in the shower
28. Nap
29. Clean my car out
30. Vaccuum my car
31. Create games for rainy days
32. Build card houses
33. Monopoly
34. Create an elabore domino setup
35. Knitting
36. Mario 64
37. Organize junk drawer
38. Read sappy books
39. Clean under bed stuff
40. Make mixed CDs
41. Change sheets
42. Socks matching
43. Friendship braclets
44. Sun bathe
45. Make chocolate covered fruit
46. Organize Hand and Foot game
47. Clean windowsills
48. Clean windows
49. Listen to music really loudly
50. Homemade popsicles
51. Library Trip
52. Hair wraps
53. Costume shopping
55. Photo box
56. Organize mail
57. Watch sunset
58. Photograph landscape
59. Make a bucket list
60. Do something from the bucket list
61. Make homemade ice cream
62. Rearrange bedroom
63. Shrinky Dink
64. Write a book
65. Go to a murder mystery dinner/cruise
66. Zumba
67. Organize road trip games file
68. Update my linked in page
69. Catch on up Words with Friends games
70. Catch up on Draw Something games
72. Catch up on Scramble games
73. Have a bank of 2,000 coins in Coin Dozer
74. Catch up on Hanging with Friends games
75. Roast Marshmellows
76. Create 10 new Dutch Auction activities
77. Drive In
79. Make a bird feeder for the backyard
80. Soduku
81. Word Search
82. Origimi
83. Skip numbers on this list to not have to think of as many
84. See how many licks it takes to get to the tootsie roll center of a tootsie pop
85. Create ringtones for people
86. Tag Sale shopping
87. Farmers Market
88. Catch up on Tivo
89. Photoshop old pictures
90. Cigar box purse
91. Read old camping magazines
92. Save articles from MS magazine
93. Go through pen box and throw away ones that don't work
94. Solve Rubix Cube
95. Make taper candles
96. Make God's Eyes
97. Gimp
98. Create journals for gifts
99. Stumble
100. Fancy Sugar cubes
101. Rewrite lyrics to pop songs for camp skits

Striving for...

What do you strive for most in your life: accomplishment, security, love, power, excitement, knowledge, or something else?

Something else - at least for now.  I am striving to like myself.  I hate to admit it, but I think I just have horrible self esteem right now.  In the end, that is what it all boils down to.

At work, I don't do as well as I could, because I'm afraid to fail.  It's kind of like a self fulfilling prophecy. 

With MS, I feel like I am less of a person now.

With friends, I don't want to tell them anything about what I really feel, because I am afraid of how they will really see me.

With relationships, I feel like they are destined to fail since I am so miserable.  I don't even want to think about one, since I know I'll ruin it.

In therapy, I'm scared about what she'll think of me.  So I avoid all the things that make it known how much I really hate me.

Sights of Summer

My backyard is lit up with hundreds of lightening bugs. I've tried to take a picture, but that was an epic fail.

More boundary breakers

If 100 people your age were chosen at random, how many do you think you’d find leading a more satisfying life than yours?

That's quite a difficult question, given my recent state of mind.  Usually, at camp, I say something along the lines of 25 people lead a more satisfying life than me.  I always figured I had it pretty well, although there was always someone better off than me.  That was ok with me though, as I always had something to work toward.

Today though, I feel rather different.  I feel that so many things are wrong with my life and the amount of stuff to fix is rather overwhelming.  Today, I would say 60 people have a more satisfying life than me. 

Now, I need to fix that.  I need to get over wallowing in self pity and work on it.  First, finances.  I need to deal with stuff that I haven't wanted to deal with.  That will be a great start.

Second, work.  I need to decide if I really want to do this, and if so, give it my all.  No more of this half ass bullshit.

Life outside of work - I need to get myself involved in something that's extracurricular or what not.  I should find a cause that I want to volunteer with or something.  I'll find it.  That will be good to keep me busy, perhaps meet new people and generally contribute to society.

inspiration

I've been thinking a lot about the various diversity, connection, team building activities we have done at camp.  I also feel in a bit of a blog rut - and only really talk about therapy.  So, I figure, answering some of these will be something else. 

These questions came from an activity we did during group's last night.  These questions were asked, in no particular order, and each member could answer.  "Pass" was always an option, but generally, folks got into it. 

What is more difficult for you, looking into someones eyes when you are telling someone how you feel, or looking into someones eyes when they are telling you how they feel?

I think that's its much more difficult looking into someones eyes when you are telling them how you feel, whether its good or bad.  If you are telling them something good, like what a difference they have made to you, its almost awkward to be looking in their eyes.  If you are telling them something not-so-good, then its just horrible to see the look or hurt or sadness in their eyes.

It's not so bad looking into their eyes when they are telling you something.  That's almost easy.  If good, you feel you have a soul connection.  If negative, their eyes might be a little softer than their words and take some of the sting out it.

Secrets are too shameful, painful, terrifying, overwhelming, disintegrating and unbearable to speak out loud in case it makes it real, in case we have to relive them all over again.

I've been talking with my therapist quite a lot about the things I don't want to share with her.

The plus side of this is that I'm able to be pretty straight up with her about the fact that I'm not sharing everything.

And I'm not really lying. I'm just leaving out pertinent information. I'll eventually get to it though. Or at least so far I have.

She was concerned about why I feel the need to leave stuff out. There's 16 million reasons really. I didn't have one for her though.

She asked if I felt I needed to entertain her.

No. I mean I don't want to be a boring client, but I'm not worried about making her day. I do worry about being tiresome or hard headed though. If its something we already talked about and I'm still feeling or doing it again, then I feel like I'm an idiot and she's gonna get bored of the same thing over and over.

On My Own

Without a doubt, the theme song of my life, and most assuredly, the best song from a musical ever.

I don't go to therapy to find out if I'm a freak

I don't think I'm really strong enough for this therapy thing.

I wondered if that was how forgiveness budded, not with the fanfare of epiphany, but with pain gathering its things, packing up, and slipping away unannounced in the middle of the night.

This is why I don’t read.  I start a book, and I cannot put it down until its done, no matter what else I have to do.  I started reading this book at 5pm.  I read until it was done at 10:30.

I got some books from the library.  I browse the catalog online, and then they ship them from surrounding libraries and can just pick them up  from the desk.  When I’m there, I always check out the displays they have.  Frequently, the best books I have found are not ones I heard about from someone, but a book that caught my eye on display.

Today was no excecption.  There was a book I spotted and in looking at the description, it didn’t seem like the kind of book I would read.  It set it down and kept looking.

I kept going back to it though.  Multiple times.  Finally, I just took it with the thought that if I started reading it and hated it, I’d just read one of the other books I had.  Or, I had so many, maybe I’d never get to it and just return it.

As I was checking out, the woman remarked upon this particular book.  “The Kite Runner.  Oh, this is such a good book.  You’ll be sobbing.”

Huh?  True, I was attempting to get a crying book.  I haven’t cried in forever, but felt like I needed to cry since the hospital.  No matter what, I haven’t been able to.  Even the saddest movies I know (PS I Love You, My Sister’s Keeper) have been unable to make me shed a tear.  I feel – hard I guess.  I just wanted to cry.

So of course, I get home and crack open this book.  I was hooked instantly.  But, it wasn’t a crying book for me – the story.

Randomly though, there would be a line or a paragraph, that would spark something.  It didn’t have anything to do with the story, but everything to do with my life. It started in the very first chapter.

That was a long time ago, but it’s wrong what they say about the past, I’ve learned about you can bury it.  Because the past claw’s its way out.

It kept happening, over and over.  Little things, would set me off.  Don’t get me wrong – it felt so good to finally cry, but it was also this moment of clarity.  I had to figure out what it was that was making me cry.  I feel like I was forced to pay attention, not just to cry, but to figure out what I was crying about.  I think therapy made me think I need to do that…

My favorite postsecrets

I find postsecret like a big connection.  There's always some secrets I relate to.  Others I think are super intriguing and they make me want to learn more about humanity.  Some are funny, scary, taboo, or just downright sad.  No matter what they are, I love reading them every Sunday.

MS Walk 2012

·         I liked the MS Walk in Worcester better.  There was better energy – I reckon a lot of that was because it was out in public. 

·         There was hardly any volunteers there….that made it kind of sad.

·         I had lots of really nice people come out for the walk.  That made me feel loved.

·         I didn’t get ridiculous and upset this year – which was very good.  Good mental health space anyway.

·         MS Walk after coming off IV steroids kind of sucks.  It’s a Nyquil kind of night.

I’ve also had some observations through a variety of sources.

The general consensus from people I know in real life:

·         I handle MS very well.  My positive attitude is going to get me through it .

·         The doctors and nurses at the hospital said this to me multiple times.

·         The friends of friends who did my walk today said this.

·         My coworkers have said this.

·         My landlady said this.

·         People who know me well, or not so well as the case may be, are worried that I handle it well on the outside, but inside I’m a wreck.

Therein lies the truth.  Someone said this to my best friend – who knows me, albeit not that well.  When my friend and I were talking about it, I agreed.  So did my friend.  It’s the whole crux of it.  I feel fake.  Not just sometimes, but all the time.  I don’t want to be fake.  But I don’t want to be miserable on the outside as well.  I want to be good on the inside.  That’s the key difference.

It bothers me that not everyone just sees the me I want them to see.  But it makes me feel like there’s hope and I’m not so alone as well.

Does MS take away the fear of death?

I’m home, and can’t sleep.  Mostly because of the steroids I think, and lack of taking anything for sleeping.  Now it’s too late to take something, as I have the MS walk in morning.  So, instead I shall blog.  Or at least pretend blog.  I might decide to post it, I might just keep it for me.  We’ll see.

To start with, I can barely keep coherent lines of thoughts together. Therefore, this post may just turn into lots of bullet points.  The most important thing for me is that I’ll be able to remember what I am feeling now, in the future, so I can see how I’ve adapted, adjusted, or just worsened, god forbid.

First, I’ve starting reading some message boards.  I wanted to read about bladder dysfunction and MS.  I’ve found out quite a bit.  I never really looked at it before, because I didn’t want to know.  I always saw that it was a possibility, but I didn’t want it to happen to me.  It turns out, I should have read more into it. 

I read that sexual dysfunctions go along with, or often precede bladder issues.  I haven’t said anything about sexual anything, mostly because it’s so freaken awkward.  First, I don’t know if the problem is caused by MS, this psychological BS going on in my head and just old age.  But no matter what, its awkward, and I have no desire to talk about it with a doctor, mental health person or ANYONE.  I figure, I’m female – there’s not much they can do about it.  There is no Viagra for girls.  It’s just kind of something I have to deal with.

Perhaps that’s true, but if that precedes bladder stuff, well, then perhaps if I had said something, at least to my doctor, it would have been found out about earlier.  Oh well, live and learn.

Next topic I saw on the message boards was titled, “Does M.S. Take Away Your Fear of Death?”

That caught my eye.  It was meant to spark a healthy debate about it, and it looks like it did.  I just thought about my answer and how I feel.

I definitely don’t think its takes away my fear of death.  It makes it more real, more necessary.  I feel that I have to have a plan of exit, in case the need arises.  I don’t want to feel like that, but geez, there has to be a point of end.  Not knowing what is going to happen is just life.  Knowing that something bad is going to happen – that’s just torture.

Someone posted that MS did not take away the fear of death – it created a fear of living.  I completely agree with that.

Morgan's back!

Roid Rage

Finally home.  Exhausted.  Cranky.

Things I know:
* I hate MS
* I hate cathedars
* I hate steriods
* I'm unhappy about this MS walk tomorrow, although I was very happy about it before this most recent hospital stay.
* I need to think my thoughts in order and blog properly, but that's not happening tonight.

Going home day!

Not a moment too soon!

almost home!

I'm still in the hospital, but going home tomorrow.  THANK GOD!  My MS walk is Saturday, and I'll be home in time for it.  I'll be walking funny from these steriods, but that's ok.  I'll just look more like I have MS :)

Still not peeing quite correctly yet, but I'm hopeful it will soon!

whine whine whine whine whine

So, I'm in the hospital.  I can't pee.  Like my bladder feels full and all, just nothing comes out.  ITS ANNOYING.

So, I've had a foley cath in for a while, that sucks even more.  It's out now and they are trying to see if the ability to pee has returned.  Dear God I hope so.

Ugh

In the hospital. Can't pee. Have a foley cathedar. UNHAPPY about it.

Paris needs no embellishment

I'm such a WIMP!

crazy day

So, I'm having a bit of a stressful day, but it has NOTHING to do with MS or mental health.  That to me, is actually VERY GOOD.

Now if the stupid people I work with would understand I am just ONE PERSON and not capable of everything on their list of things for me to do, that would be fabulous!

Religion is like a penis. It's ok to have and be proud of, but please don't whip it out in public or try to shove it down my throat.

Oi Vei - this guy came up to me at the grocery store - in the parking lot - trying to tell me how much God loved me and how I can be saved with Jesus's blood.  He spent quite a long time trying to sell me on this, and all I could think was that I wanted him to shut up.  I appreciate when others have God in their life, and I'm grateful when they tell me about it when I ask - but I'm not a fan of strangers forcing me to listen to their ramblings.

“Writing is a form of therapy; sometimes I wonder how all those, who do not write, compose, or paint can manage to escape the madness, the melancholia, the panic fear, which is inherent in a human condition”

Sundays are my typical think about my life, stress, have anxiety, etc.

Lately, Sundays have been thinking about therapy.  I wonder what my therapist would say to the things I’m thinking.  I’m good at telling her things in my head.  I’m not very good at knowing how she’ll respond.  I know it will be positive and “the glass is half full” kind of things, but I don’t really know what she will specifically say.  I will say, if she could bill me for all the time I spend thinking about her, she’s be a freaken billionaire.

That brings me to transference.  I’ve read a lot about it while I’m googling for things.  According to what I’ve read, I should either wish she was my mother and love me unconditionally, or have romantic feelings towards her.

First, she’s younger than me, so the mother thing just doesn’t pan out for me.  The romance – I’m a little skeptical about that too.  First, I don’t think she knows I’m a lesbian.  I’ve never actually said, “oh, I’m a lesbian.”  She could quite possibility have figured it out, and I’m sure it will come up at some point, but in the mean time, I’m not inclined to make it a big deal out of it.

As for her – I don’t think I even have a crush on her.  She’s cool, don’t get me wrong.  I think about her a lot, which is typically the signs of a crush.  But I don’t think of her in that capacity.  I don’t think of her in the bedroom, so to speak.  She’s totally my type – pretty low maintenance, no make-up, kind of thing, but she’s my therapist.  I think she’d be cool to hang out with, as a friend, but that’s about it.  And even that – I’m grateful she lives rather far away from me.  I’ll never accidently run into her at the grocery store or gas station – and that’s a good thing.  It would be so awkward. 

Now, moving on, I generally come up with some categories of things stressing me out or occupying my mind for when we meet.  The day we actually meet, I’m surprisingly calm and level headed, so its good for me to have things on my mind that had been a problem, even if that day they aren’t bothering me.

Today, I’ve kind of made even broader categories than normal.  It’s just feeling like the things left to talk about are the really difficult ones.  The things I don’t even want to admit to myself, never mind out loud, to another person.

First, I want to talk about termination.  I’ve never actually terminated with a therapist the correct way.  I’ve always just stopped going.  I generally feel guilty about that.  I want to do it right.

The reasons behind wanting to terminate is the part that makes me think that termination is the last thing I should be thinking about.  I want to terminate because I don’t want to deal with the rest of it.  I want her to think she’s helped me (which she has) and that’s it.  I want to be normal.  I don’t want to go to therapy weekly, and I don’t want to be taking antidepressants.  I want her to think I’m healed.   The logical next step is for me to tell her all the things I don’t want anyone to know…professional or not. 

I’m also scared of feeling this dependence on her.  I think about her all the time.  I don’t think that’s helpful or moving forward in any kind of direction.  I think that’s ridiculous.  I’m afraid it’s going to be get worse.  I’m kind of scared to have a crush on her.  Whether or not that’s normal, I think its unhealthy. 

I also don’t want to talk about the rest of it.  I feel like I’ve got a good handle on the immediate reasons that brought me there in the first place.  I can cope with the little daily things much better now then when I first started going.  The downside of that though, is that there’s other stuff, that I avoid even thinking about.   Without having to think about the daily things, my mind of course wanders to those.  In many ways, I don’t want to share those with her, because I know she will find a way for me to positively deal with them.  One would assume that’s a good thing.

I want to punish myself by having those things there without any resolution though.  I want to feel guilty about them.  I know that no matter how much good I do in this world, I didn’t speak up during those times when I should have, and I should feel bad about it.  This may sound crazy, but I feel  I deserve to suffer with them for the rest of my life.

My therapist

I feel like I’m really meshing with my therapist.  Much better than I did with the previous one.   I don’t dread going to see her.  I think I’d rather not see her, cause needing to see her makes me feel like I’m crazy and somehow, not effective.  The truth though is that I’m not capable of dealing with everything, and seeing her is pretty helpful.

She’s young, younger than me I’m sure.  Once she said something about “being 30,” but I think it was the way one rounds up.  I’m guessing she’s 26 or 27.  I’m 34.  I’ve heard from others that I should be seeing someone with more experience, who has worked with patients with MS before, yadda yadda yadda.  At the end of the day, I like her demeanor, her logic, her people skills.  Someone who has been doing this 40 years might know a bit more about it, but I like her.  I don’t dread going there.  That’s what is most important to me.

I Google things all the time, especially about therapy.  I keep trying to find ways to bring up conversations.  When I was ridiculously stressed out that I didn’t have a suicide plan….and just a way to die, I googled an awful lot about that.  I needed to know that if I shared this with her, she wasn’t going to have me committed to some psych program or call an ambulance or something.  I never really found a concrete answer, but I told her everything that was going on anyway.  Nothing bad happened…it’s just something we talked about.

We did have a difference of opinion, and now that’s I’m feeling more stable, I can see that of course we do.  I was more worried about how I would die.  I wanted to know so that if the time arrived, I’d have a plan in place.  I didn’t necessarily have a time, but I needed to know a plan.  The biggest concern for me was HOW.  For her, it was WHY needing that how was so important.  I’m not sure what I was hoping to get out of it, I mean I knew, even if my chaotic state, that she wasn’t going to give me pointers. 

Anyway, I feel that that was perhaps to hardest conversation to have with her.  Probably not the most awkward – that will be the sex conversation – if and when we ever have it.  But it was the hardest, and it happened. 

When I first started seeing her, it was every two weeks.  Since that whole freak out week, it’s been weekly.  I kind of like it, in that I know I am going to see her if something comes up.  I don’t have to stress and I don’t have to make that dreaded phone call of asking for an appointment during an off week.  Perhaps we will soon go back to every two weeks.

 

Things that make me happy

* Sunshine
* Reading a book while sitting in the sunshine, when its not too hot, of course
* Easter Candy - 75% off
* A Few Good Men
         Lt. Weinberg: You've heard her. The girl sat here, pointed and said, "Pa." She did. She said, "Pa."
         Kaffee: She was pointing at a mailbox, Sam.
         Lt. Weinberg: That's right. She was pointing as if to say, "Pa, look, a mailbox."
* Cranberry Pomegrante Juice
* Clementines
* Draw Something

wasted time

I've spent three hours listening to a guy try to sell me a vaccuum.  Waste of time, but all my carpets have been cleaned well and shampooed.  I can't complain.

The most difficult phase of life is not when no one understands you, its when you don't understand yourself.

I've been trying to write a blog post for days.  I keep getting caught up on my words and don't know what direction I want to go, or how much I want to share. 

I'll just say what I need to say in easy bullet points...

* I'm feeling - guilty? - from last week's therapy....weird...
* It was hot today - that's never good.  Have to keep the cooling vest ready for the week I guess
* I finally cleaned my house.  It's rather nice.
* Next week is vacation week.  That means I'm going to be exhausted - but hopefully can stop thinking about all that is wrong and just be for the week.
* The company I ordered shirts for our MS walk donated to my team.  I thought that was rather nice.
* I've given up drinking Coke in my home.  I'll still have it when I'm out, but I'm sticking to water at home.  I think it makes me feel better.
* I finally did my taxes yesterday.  It's about freaken time.
* I want to bring up the subject of sex with my therapist - but it feels really awkward.
* I've messed up big time with a work thing...but I think I can fix it, so stress is low about it now
* I took a "nap" today from 6-9pm.  Going to sleep tonight is going to be challenging.

The Health Activist Writer's Month Challenge.

So, I just saw this on someone's blog, and I'm quite sorry I didn't see it earlier in the month. Anyway, today's challenge:

Theme song. Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?

My theme song would totally be upbeat...make you want to dance around and sing along.  It would be like the theme song from Friend's, Gilmore Girls or Dawson's Creek.

The lyrics would probably refer to my always different mood. Sometimes I'm really happy....othertimes, I'm pretty hopeless.  It's all part of me and who I am.  Ohhhh, maybe the song would inclue the song, "Who I am"

technical question

How come with the new blogger, it isn't entering my paragraphs for me. I don't know HTML codes...

light at the end of the tunnel

I'm feeling pretty good. Actually, remarkably good.

I'm choosing not to think too much about it. If I do, I might realize that's it's not real. But I feel like it is. I got this book, from the Avonex people. When I first got it, I glanced at it, and all I saw was these hopeful sentiments. They annoyed me. I put it down and didn't pick it up again until last night. Now, today, I can't put it down. It's not like a novel, I have to keep reading to find out what happens....it's more like a text book, but interesting. I'm finding it honest and straight forward. I find its very real. In many ways, it's comforting. I think there is actually quite a bit of it I can use. It will help me to feel better when I get bleak again.

•"You never really understand a person until you consider things from his point of view... until you climb into his skin and walk around in it."

To Kill a Mockingbird is on TV tonight. I LOVE this movie. I loved the book even more. I had to read it in 12th grade English. The first night, we had to read the first chapter. I couldn't put it down. I just kept reading and reading until I finished the book in the wee hours of the night. The next day, we had a quiz on what we read, to make sure we read it. I failed. I kept getting things that happened later in the book confused. My teacher knew I read the whole thing, but still, I got the answers wrong. Every day I failed the quiz, because I kept mixing up parts of the story. I don't know why it didn't occur to me to just re-read the part that was assigned that night. That would have been sense.

Of the many contradictions that exist in the world, the contrast between love and hate is perhaps the starkest.

I can't decide if I love my therapist or hate my therapist. Either way, I went tonight and brough up most (not all) of everything on my mind. I guess I need to think about it and process everything before I really decide how I feel. I mean, I don't feel like anything is solved, but I wouldn't expect it to after talking to her about it once. I just feel relieved that it's out there. It's no longer a burden I'm keeping all to myself. That's the good thing.

Another time, another place

It's only 2:00 and already it's a bad day.

1. My sister miscarried.
2. Parents in my program are idiots.
3. Stupid staff drama.
4. I'm stuck while trying to do my stupid taxes.
5. New debit card still hasn't come.

And I'm seeing therapist tonight. I had all the gumption in the world to talk about everything, and now I don't even wanna go.

At least I'm running program for kids in a bit. That always makes me feel better.

It's only Wednesday??

Geez. This week is going slow. I saw my new camp today, or at least the location we're going to be in. It's lovely!

April 3, 2012

Today would have been my mom's 63rd birthday. It's the first birthday since she passed. The day was not as difficult as I thought it would be.

I've been going kinda nuts since Saturday. I've never had a panic attack, but it kind of felt like a big long 48 hour panic attack. I seem to think panic attacks can't last that long, but it was definitly weird. I couldn't think, function, anything.

That's when I started fretting about everything with therapy. I know the exact issues that keeps pestering me. I also know, I never bring it up. I feel like, if I just do, I might be able to move past it.

I texted a friend on Monday morning. I asked her if it was weird for me to call my therapist to schedule an appointment for this week. I didn't have one this week (I've been going every two weeks). She responded and said that is what I was suppose to do. She said they knew issues didn't just come up every two weeks.

So, I called her. I was in a very precarious place, and couldn't speak much without crying. I got her voicemail. I left a message, that wasn't detailed, but said I wanted to know if she had any openings this week. She's only at the office in my town one day a week, so its pretty logical she might be full.

Anyway, she called me back. I was pretty brief, but scheduled an appointment. Now, for bringing up everything I've been thinking. I've toyed with the idea of writing her a letter, but that feels odd.

The good news, is that she knows this isn't regularly scheduled. If fact, I've said specifically, I didn't need to come every week. So, at the very least I'll have to explain the reasoning.

I've narrowed down all the immediate concerns to 5 specific things. I don't actually think we'll get to talk about all 5, but if I get them out, at least she'll know if I'm avoiding them in the future. Hopefully, we can talk about one or two of them Thursday.

Here's hoping.

Spring sprung, then left

I've not updated in quite some time. That's partially because I'm pretty good and things are stable and partly cause I feel so miserable I don't even want to write it.

So, I've been seeing this therapist now for a few months. I really like her. She's easy to talk and I find her input on things very helpful. She's not all "how do you feel about that?" but actually chimes in with her own stories and experiences. I enjoy talking to her.

The problem is, I don't actually talk to her about the real problems. I talk about work and problems there and that sort of thing, but really, its pretty basic stuff that I can handle.

The real problems - they are much harder to just bring up. And if I don't bring them up, we dont' talk about them. Last week, I had decided that I really wanted to start to bring up the real stuff going on. I knew it was going to be impossible to bring up. So, I thought about writing it down, in a letter to her.

That's was a great idea until I pictured actually giving her the letter. That's when I decided not to write the letter and just be ballsy enough to bring it up. I didn't.

Now, its high on my mind again, and I've got to find a way to bring it up.

stupid Massachusetts

I haven't posted in a very long time. Mostly, that's because I had nothing particularly interesting to say.

Tonight though, I'm super cranky with my lovely state. I guess there is legislation that does not allow drug companies to provide assistance to patients to use their drugs.

I should backtrack. When I started the new job, my insurance company did not cover Avonex. My doctor wrote them a letter and they approved it. I had a $0 dollar copay, which amazed me.

Now, all of a sudden, I have a $60 copay. That's a lot. At my old job, it was a $25 copay, and I could handle that, but $60 is a lot! So, I called Avonex, because they said they provided assistance.

I went through all this rigamaroll with them, only to find out MA does not allow drug companies to provide copay assistance here.

I've reasearched it. The reason is that they are concerned more people will go on brand name drugs rather than use the generics if the brand name drugs subsidize the cost of it. That makes sense to me, I guess. However, there is not a generic for Avonex. I don't have a choice. I'm not trying to use a brand name drug when a generic is available. BAHHHHH!

So, now, Avonex has sent me to some fund agency place to apply for assistance with them. It's freaken paperwork and annoying as all heck. Seriously, I feel like I just want to stop using any medication. I don't care tonight. I'm annoyed at my state, at Avonex, and with MS in general.

long week

Last week was crazy. It was a short week, but school vacation was nuts. We ran a program for a lot of kids....much more than usual. It was crazy! I am still exhausted. I slept all weekend and still today I was dragging.

That, and I'm walking funny. It's very weird. I kinda feel like its a just a funny, "I'm getting old walk," but then again, I'm not really that old and I have MS. So who knows?

In other news, my favorite candy - and I've got two bags of them :)

I don't know if I'll make it, but watch how good I'll fake it

Ugh, my back is hurting again. I really think its something MS related, but my doctor does not. I'm gonna trust her. But its annoying.

So, I did make my doctor laugh when I was there last week. I'm a pretty funny person (if I do say so myself). I tend to crack jokes randomly in conversations with everyone. I'm not obnixious about it, just enough to make someone smile.

I say whatever I think when I'm talking to her and usually, she doesn't acknowledge it. I'm not sure if she just doesn't find me funny or doesn't get that I'm making a joke.

Anyway, last time I was there, I told her about how great I was feeling mentally since starting the Zoloft.

I told her, "You said it would take two weeks to work....well, I felt better in like 10 minutes."

That's when she laughed. I also told her though that about a month after I started it, I felt really good. I feel like I did before I had MS. I feel like I can get through a day and get done what I need to get done.

Now, my legs are driving me nutty. When I was little, my best friends older brother used to pull off my barbie's legs and put them back on the wrong side. That's how my leg feels...like it was taken off and put back on backwards.

Doctors office

I'm waiting at the doctors office. Shes running behind, which is pretty normal for her. I expect it, and know its cause she's so patient. She takes the time she needs with patients. I appreciate that and know that's why she is late. I'm ok with it.

There's this guy here that's being an ass about it. He needs to get over it. Deal. It's a doctors office, of the best neurologist in mass.

Camp Orange is finally a reality!

When I was an undergrad, I took a class called "Camp Management and Administration."

The final project in the course was to create a camp. I had to create a budget, programming plans, risk management plans, and the whole nine yards. Camp Orange was amazing. I had so much fun on that final project. My Camp Orange (I should mention that has nothing to do with MS, it's my favorite color. This was long before I was diagnosed with MS) was the most amazing camp anywhere. It was a multi-billion dollar operation. We had it all.

I've been bumming about not being involved with camp summer. It turns out, my Y wants to start a new camp program in a small little town in Western MA. I'm ridiculously excited about it.

And of course, I've named it Camp Orange. Really, what did they expect to happen. They told me to create a camp and provided no name. Of course it's going to be Camp Orange!

focus group fun!

I participated in this MS focus group thing tonight. It was pretty fun. I had to agree not to disclose anything, so I'm not even sure if I can post even what it was about. But it was MS. That's enough. It was fun, and I get a $25 Amazon gift card for participating.


I also heard back from Avonex, cause I couldn't log on to the Active Support website. They reset my password and I was finally able to log off after MONTHS. I took the little test, which saves my answers from previously - and I'm in a way better mental space than I was a couple months ago.

All in all, its been good. Work stinks. Everytime things get under control, something crazy happens. I can deal with it all tomorrow. Tonight is good!

superbowl? I don't like baseball.

It's superbowl Sunday. That means everyone I know is watching the game. I, on the other hand, am catching up on Tivo. I like the commercials, but I can watch them online later, without all the pesky football in between.

I learned, or rather remembered something today. A long time ago, I was seeing a therapist. I was seeing her for a variety of things, but mainly that I was struggling with despression.

She was nice enough. I kept going, but really wondered how effective it was.

Then one day I had my appointment while some camp folks were staying at my house. They were from Australia, had traveled the country after camp, and were staying with me for a few days before flying home. I brought them with me to this appointment, because it was in downtown West Hartford. There were lots of stores and such and they'd have fun shopping.

As we got there, we noticed that most of the stores were closed. It was a Monday night, and they apparently closed at 6. I wasn't sure what they would do, but they saw a bar that was open. We laughed, as they were sterotypical Aussies, and were always willing to kill time in a bar.

As I walked into my appointment, I was laughing to myself (and probably talking to myself too!). This office was inside an indoor shopping plaza. There were various stores (all closed), plus the doors for this office. Outside the office, there was a little wall, with stones and plants behind it. Typical mall decor.

Anyway, as I'm walking, I notice that I smell smoke. Cigarette smoke, which is odd, cause I'm indoors. Definitly a no smoking place. I saw my therapist sitting on the wall, smoking a cigarette.

That is totally against the rules, I'm sure. It was cool. And I was still laughing from the previous interaction with my friends. We went up to her office, and she commented on the complete change of mood in me.

That brings me to today. I spent most of yesterday feeling sorry for myself. Annoyed with life, MS and all that is entailed. I've thought a lot about my upcoming neurologist appointment, and what exactly I'm going to say to her. Not much productive happened.

Then this morning, I had a plan to meet a friend for breakfast at Friendly's. She not a particularly close friend, but we organized it. Just going out for an hour was amazing for my mood. I feel like I am thinking more clearly and definitly in a better space.

Friends is the solution to depression. I'm convinced.

Are you there vodka?

I was thinking, I haven't had a drop of alcohol since being diagnosed with ms. I kinda figure, I have enough issues with brain cells, there's no need to make it worse. But what the heck? Maybe that's just what I need!

Life is pretty stable lately. In fact, I've laughed a lot these past couple days. My personality is coming back. I'm grateful for that.

It's just times like these. When I can't sleep, and start to think, that I feel not like me again.

Morning will be better. That I know!

Forgetful.

I forgot my debit card pin number. This has been my pin number since 1995. I was at the ATM and just drew a blank. Geez.

After three faulty attempts my card was shut off. I called the bank. They fixed it but thought it ridiculous I had entered it wrong.

What can I say, I have MS.

I'm tired!

Well, I made an appointment with a therapist. I had that appointment today. It wasn't horrible. I think I like her. She's young...probably graduated within the last couple of years.

I liked her much more than that other woman I saw. I hated talking to her. She played the game where she says nothing to make me talk cause I can't stand the awkward silence. Except I work with children. I've mastered the art of awkward silence. I could always outlast her. It wasn't a productive relationship.

This one, I generally enjoyed talking to. It was only the first visit, so just lots of questions and answers, but still, it wasn't bad. I was also fairly honest with her. Which, I kind of have a history of not being completely honest with therapists and the like. I feel silly and then just don't share everything.

There were a couple things I didn't mention, but the really important stuff, I shared honestly. It seems silly, but I was pretty proud.

There was no wiggle butt greeting me as I came home

Morgan left. I'm both sad and happy. Don't get me wrong, I love her and I loved having a warm greeting every day when I got home. But, I also don't have the life style that's condusive to having a dog. I work long days and I feel very bad she's on her own so long.

The other big news - we finally had a real snow storm. Not much, but legitimate. Another one is scheduled for tonight into tomorrow. I'm talking my Avonex tonight so that I'll sleep the snow storm away along with the flu. Woohoo!

camp

Camp has always been a big part of my life. As a child, I counted down the days until camp started the next year. I loved camp.

A few years ago, I found my favorite camp counselor on facebook. She was amaazed I remembered her name. I was amazed she remembered me. We caught up, she asked me what I did now.

I told her I was a camp director. She laughed and said, "of course you are." It was nice to catch with her.

She has a daugther that sells Girl Scout cookies, and I buy cookies from her every year. The daughter called tonight to see if I wanted some and then I talked to mom.

She told me that she and her family were going to walk in my MS walk this year on our team. Her husband used to be very involved with the MS walk years ago and hadn't done it since the birth of their kids. So, they were excited about this. I, of course, am also excited.

Are you sure it's winter?

The weather is gorgeous today and Morgan and I walked forever. Now she's a tired pup.

Major Topper

The placebo effect works on me at least, even when I know that's what it is.

I am reminded of the episode of M*A*S*H, where they ran out of pain medicaton and gave all the post op patients sugar pills, but convinced them they were really strong pain pills. It worked. All the patients had less pain and went to sleep.

Last nigt I took the first dose of Zoloft my doc prescribed. A couple hours later, I felt amazingly good. Now, she said it would take about 4 weeks before I noticed if it was working. I'm pretty sure that its impossible to notice a difference in less than 4 hours.

But I did. As I went to sleep, I was feeling much better than I had in a long time. It was rather nice.

Now, this morning, the day I can sleep in, I was up 2 hours before my alarm even goes off on weekdays. I was thinking about everything, and not necessarily productive thoughts. It's rather weird waking up because your brain in thinking so much. But its 7am, and I've already done more today then I thought I would get done in the whole weekend. Win.

Each difficult moment has the potential to open my eyes and open my heart.

I did it. I told my doctor the truth about what was really going on in my head. I didn't think I would. As I was in the waiting room, I kept going over the conversation in my head, but when she called me in, I froze. I planned on just making small talk and leaving.

She asked general, "how are you doing?" questions - I gave general answers. Then, she asked about the Avonex, and that's when I brought it up. I was ridiculously long-winded, which is so the opposite of how I usually am.

As I started talking, I instantly regretted it. At one point, I started thinking about how I could change the story to not actually tell the truth, but I did it anyway. I kept talking, and told how I was honestly feeling. I probably didn't make a lot of eye contact, since I didn't want to tell her the whole truth anyway.

And she didn't look at me like I was nuts, didn't judge me or anything. She just kept asking questions. She isn't sure if its life, or because of the Avonex. She started me on some antidepressants. If I feel better on them, then its life that is making me feel the way I am. If I don't feel better, its the Avonex and she is going to start Gilenya or Copaxone.

I'm not certain how I feel about that, but I love the fact that she just knows what to do. She doesn't think I'm crazy, she didn't judge me, she just knew what to do.

I feel such a sense of relief after talking to her...and the social worker at the MS center. I feel like saying it out loud was a huge step. I haven't said it to a single person in real life and today I did, and dang, just that has made a huge difference.

Next step tomorrow is to find a therapist. Talking about it only helps.

to tell or not to tell...

So, I'm questioning my mental health again. I guess I'm always wondering about, or at least trying to see where I am. But lately, I know it hasn't been good. I've been preoccupied with negative thoughts, feelings, emotions. Lots of feeling sorry for myself type of thoughts, which never lead to anything good. Yesterday, I was reading about an event happening next fall. Without even realizing, I thought, "oh, I'll have killed myself by then." WHAT??

That's just crazy. I've thought about wanting to die, but not seriously, and certainly no plan or timeline. I'm really not sure where that thought came from, but it was definitly a wake-up call.

The good news is that I'm going to see my doctor this week. The question is, Do I tell her, and how much do I tell?

I'm notorious for not giving all the pertinent information. I'm quite happy to just let folks think all is good, but really, inside I'm a wreck.

I imagine that if I really tell her what's going on, she'll suggest I see a therapist (which isn't a bad idea, and I plan to find one around here). I also think she might take me off Avonex....I was reading their little literature, and it said if I had thoughts of suicide or depression I should tell my doctor immediately. They may decide to stop treatment.

For some reason, that makes me feel like a failure. Stopping the treatment seems bad. I don't even know if its the treatment that is making me feel so messed up.

I know, its life that is really happening. I wonder if MS and Avonex are just making it worse? That is an excellent question for the doctor, and yet, I know I'm going to try to avoid telling her.

When I get there, there will be this little questionaire to fill out. A list of symptoms and check boxes....you check if things are better, the same or worse and its a good way for the doctor to know what to talk to you about.

I can just picture myself checking the same for everything, when in reality, I should check worse. Oh heavenly being, grant me the ability to bring up what is really going on.

my horoscope for 2012

Well, the Yahoo! front page story was a link to see your horoscope for the year. Mine said:

The winds of change are not about to let up just yet! With the arrival of 2012 comes yet another flurry of eclipse patterns to shake up your status quo. In June, the full Moon lunar eclipse in Sagittarius is the last of the series, bringing the final wave of a sea of oceanic changes you've weathered over the past few years. You've probably experienced dramatic endings or beginnings (or both) of important relationships and extensive personal transformations recently. Depending on where you find yourself at the start of the year, you can expect to experience the total other end of the emotional and relationship spectrum before 2012 is over.


According to it, the oceanic changes I've seen won't let up until June. Geez.

near tragedy

So, I canceled my neurologist's appointment last month, becuase my new insurance company said I needed a referral from my PCP. My new PCP would not see me until she got my records from my old PCP, so I canceled that neuro appointment and scheduled a new one for this month.

They called yesterday to remind me that I had the appointment. I called the PCP again, who still hasn't gotten the records. I was hopeful and called the insurance company to see if they could waive the need for that referral.

Happily, I found out that if she was in-network, I didn't need one anymore. Great news! But, the story doesn't end there. They looked her up and said she was not in network. GASP!

I asked before I took this job, as her being covered by my new insurance was part of my decision in taking the job. When I called her office, they said she was covered by this insurance.

I call back the insurance company. She looks again and says, nope, not one of our doctors. However, Dr. Bell, who is in the same office as her is one of them. That makes NO SENSE to me. I'm babbling about how illogical I think that is while she looks up Dr. Dayaw by address and finds her.

She says, "Oh, I've got her, she's covered, but her name is not Dr. Dayaw." Now, I realize, this woman has many names, but I am 100% confident that Dr. Dayaw is the name she should be known by with insurance companies.

Her full name is Dr. Maria Pilar Elisa Tejada Dayaw. Her business cards have random initials in there instead of the actual names, and the people who know her well from the MS support group call her Lisa, but basically, her name to me is Dr. Dayaw.

The insurance company says her name is Dr. Pilar. Dr. Maria Pilar. That's wrong, and I know that. They read her whole name though, and its definitly her. That, and there is no Dr. Pilar in her office.

Thankfully, all is set and I can see her next week. Phew.

emotions

Something came up tonight that has come up recently as well. My cousin said to me, "you are always in conrol, your emotions are always stable."

This past summer, I was critized for the same thing. When I was mad or aggitated, no one knew it. I was always in control of it and just dealt with the situation.

But, that was work. I am meant to be like that at work. I'm the boss. The boss should not be hot headed. At least, I don't think she should.

When my cousin said it though, I really thought about it. My own family thinks that about me. The problem is, I don't think that about me.

I feel like I'm a mess inside. Everything in my head is so jumbled, and I feel like, metaphorically, I don't know which way is up. I'm just trying to get through each day, and yet, to others I come off as stable. Interesting.

Morgan!

She's the greatest.

I'm a doggy mommy....temporarily

My friend is in Australia. I get her black lab, Morgan. Morgan is wonderful. I adore her. When I was first diagnosed and discharged from the hospital my friend gave me Morgan for a couple weeks. She felt (rightfully) that I needed her to keep me motivated to go on living.

I'm grateful she did. And now she's in Australia for a few weeks and I get Morgan the whole time :)

Christmas has come and gone

The holidays were good. Very weird without my mother, but otherwise good.

The first week of January, I have an appointment with my doctor. The new insurances requires me to get referrals, but the new PCP won't see me without medical records from the previous...and she hasn't gotten them yet. It's never ending, and I have to make a bunch of phone calls this week.

Its vacation week for the school kids. That means my week is going to be crazy, but a good kind of crazy. I'll be busy. Tomorrow is ice skating. I haven't been to this place yet, so I'm excited to see what it's like.

As I'm writing, I am realizing I have nothing important to say.

the holidays

I tend to write more when things aren't going so well. I think I've always been like that...as a teeny bopper with diaries. If I go back and look at them now, my life looks horrible. But combine all the drama of teen angst, along with only writing once every four months, that's what you get.

So, this is a happy post. Nothing is wrong post. I've been feeling pretty good. I got my tooth pulled last week. That kinda sucked, but it hurt so much. I reckon that was the reason for all the other illness going on. As soon as the tooth came out, everything was better.

I wasn't coughing anymore, nothing hurt, it was brillant.

So now, we are onto the holidays. I've got a friend's I am going to go to. Life will be pretty good :)

another fever

I'm not going to freak out if anything happens but its really getting annoying. Whatever is going on needs to get better, like now.

Heat

So, we all know heat makes MS worse. Last night I learned that also applied to having a fever.

That's logical, although I didn't think of it when I went to the ER. I had a low grade fever. I went to sleep. I woke up and couldn't see. Everything was blurry. I was ridiculously scared.

Turns out I didn't need to be. It was just the heat from the fever.

I feel very stupid really. I know I am meant to wait 24 hours of symptoms. I know much better..I shouldn't have gotten so scared.

On another note, the ER doc had an eye chart app for his phone. It made me think doctors must have the coolest apps.

First try at speech to text blogging

Well, I finally found an app that lets me speak and not type. It's a lovely.

And from this post, I figured out how to add punctuation.

So all in all it's been a little crazy lately. I just haven't been feeling well. Am but hopefully it's going to get better.

So the text to speech thing is not working as nicely as I've hoped but it's better than trying to type this whole thing.

Anyway I been sick lately. Like regular sick not MS sick. But I'm just so scared that something is coming my way.

Here's hoping I can just get through the holidays with nothing bad happening.

MS walk shirts!

Custom t-shirt printing at CustomInk.com

Resolved

My new job came with new insurance.  They said they didn't cover Avonex.  I had to use Rebief.  I don't have anything against this other drug, I'm just used to Avonex now.

Today, I was on the phone with the new specialty pharmacy working on the order.  He said, "Your case is on stage 6.  You've done most of the work already."

Actually, I did very little work.  I called my doctor's office.  That's about it.  They are BRILLANT.  I'm fairly certain it was entirely them that made it happen so quickly!  Dr. Dayaw is brillant and the staff there are so efficient.

I had an appointment to see her in December at the MS Center, but canceled it today.  The new insurance company also requires me to get a referral to see her, but the new primary will not accept me as a patient until they get my medical records from my previous doctor, and I imagine that will take longer than getting to her appointment.  I canceled it today with hopes that someone else can still get into that appointment.  And I resheduled for January, so it's all good.

Thanksgiving, birthdays

Ugh.  I'm sick.  Just regular sick, not MS sick, but I feel yucky.

Thanksgiving was good.  I went to a friend's house and we had a good time.  Her fiance was there, with his children, and all of her children. 

My birthday was also good.  We went to Golden Coral for dinner.  They now have a chocolate fountain, which is delicious.  I made chocolate covered strawberries, marshmellows, pineapple, and apples.  While eating them, I was geting chocoalte everywhere.  My friend said, Heidi, you are covered in chocolate.

I replied, without even looking at her: "Its my birthday and I have MS."

It was a pretty funny moment :)

Mrs. Clause was there to celebrate Black Friday I imagine.  She, and a bunch of waitors, sang Happy Birthday.  That's always fun.

And then Saturday hit, and I'm sick.  Blah.  I've spent most of the day sleeping.

so far so good

Well, I figured I would definitly have a flare after everything that has happened in the last few weeks.  Moving.  New job.  Death of my mother.  Surely all those things put together would bring it on.

It hasn't, or at least not yet.  I don't feel particularly well, but I just feel sick.  Not MS sick, just plain old regular sick.  It's not even that bad.  So, knock on wood, all is going well.

Another shot...missed

I missed my shot the night my mom died.  I kept meaning to do it, and then I was 5 days late doing it....so I just skipped that week.  I did it the next week, and had major side effects.

Now, tonight I took it out the fridge earlier and I can't freaken find it now that its time to take it.  I'm super annoyed.  I remember taking it out, and then, have no idea.  I don't want to take another out, as I'm already a little screwed when it comes to getting more.

I had 4 doses, which would at least give me time to get it organized.

Ahhh!  I have a fairly small apartment.  Where the heck is it?

The death of a mother is the first sorrow wept without her.

In the midst of moving and starting a new job, my mom passed away.  My wonderful, happy, amazing mother.  She drove me crazy, but she always cared 100%.  I was her only child, and she cherished me.  I don't think I ever realized how much I cherished her until she was gone.  It's been 9 days now.  There have been 9 days of my life that she has not been on this planet. 

I miss her terribly.  I would give anything just to be able to talk to her one more time.  To hug her one more time.  To listen to her ramble one more time.  To deal with her pack-rat tendancies one more time. 

I love you mom....I hope you know how much. 

http://www.legacy.com/obituaries/hartfordcourant/obituary.aspx?n=barbara-j-gutekenst&pid=154426008

lots of changes

It's been a while since I've posted.  Posting makes it feel real.  I'm not so excited that it is real.

I've quit my job and am moving back to Western MA.  I'm quitting camping.  It feels like it's just too much.  The heat, the hours, the stress.  I feel like a bit of a failure and I have no idea what I'm going to do come next summer.  Camping is my life.  It just won't be, at least for a while.

Beautiful Imperfection: Katie Halchishick’s Iconic Photo Hits the Stands

Beautiful Imperfection: Katie Halchishick’s Iconic Photo Hits the Stands

Absolutely awesome apples

Went apple picking. I've been feeling ok but DANG it was hot. It's meant to be fall, but it was in the 80s.

shhhh....can you hear it?

The universe is talking to me...am I listening?

How could anyone? By Libby Roderick

How could anyone ever tell you, you were anything less than beautiful?
How could anyone ever tell you, you were less than whole?
How could anyone fail to notice, that your loving is a miracle,
How deeply you're connected to my soul