Here We Go

loup
8 January 2011

Monday (HAPPY BIRTHDAY TO ME!!) is my LAST (for real this time) general weight management appointment. By Wednesday stuff should be off to insurance for approval. Was told it can take up to 30 days … so I should be getting scheduled any time now.

Reading “The REAL Skinny on Weight Loss Surgery” by Janeway, Sparks and Baker right now. A lot of clear and concise information that the touchy feely crowd doesn’t mention.

Doing research on fibromyalgia and WLS – came across one study but looking for more people with both and see if the weight loss or the diet change has done anything for or to their fibro. Not holding my breath. It isn’t why I am having the surgery to be sure but added bonus would sure be nice.

Got some awesome PENGUINS swag from Vicious for my birthday. LK got me an Android tablet – the Samsung Galaxy. We sold the iPad. It is THAT cool. If I could find a mp3 player that ran Android that I liked I would get rid of my ipod touch as well. Yeah I love ANDROID that much. = 0 )

Truckin’ Along

loup
29 November 2010

Had another weight management appointment today. I have to have 6 of them before insurance will even look at me for WLS. Today was #5. It is all going pretty well. The attending doc told me I had good genes. Since I don’t have any health issues that usually come with being fat – I am pretty healthy for tipping the scale at 300 plus. Of course that is what they tell me – good genes.

If I had good genes I wouldn’t be fat.

Everyone in my family is fat or struggles with weight. There isn’t a lot of acceptance either. I can’t remember a time when weight wasn’t made an issue for me. My earliest memory about my body was thinking my thighs were too fat. I was four.

Thing is looking at pictures of me as a kid – I wasn’t fat. It was just all of the negative talk and poor body image the people around me had. Trying not to be bitter but I wonder where I would be today if the people in my life LOVED their bodies.

My cousin once told me I needed to suck in my gut – basically hold my breath and keep my stomach muscles tight all of the time … I was 5.

Everyone seemed to be on a diet all of the time and losing the battle.

I tried love and acceptance for as long as I could – 100 lbs of it. But I don’t love my body at 318 pounds. I didn’t love my body at 218 pounds but I tried.

I really did try to be a better person by just accepting my genetic fate since diets didn’t work and eating right and exercise didn’t make a dent. Love myself at any size. But once finding clothes that fit off the rack became a problem I had to make a choice. I’m giving up the charade. I don’t love my body like this. If I don’t accept that now it will only get worse. Denial is a bitch.

So this is me – truckin’ along the truth highway and giving it all I’ve got. Fat happens and there is nothing wrong with a thick girl – I honestly believe that big can be beautiful. But for me there is a “too big” stage and I am dancing all over it.

Busy Week

loup
4 November 2010

I went to the WLS Support Group Meeting last Thursday night with LK. A lot of my fears were quelled. I spoke with several people who were pre-op – turns out all my wishywashiness is normal.

Friday LK came home from work and told me that he wanted to change the way he deals with food as well. He isn’t going to have surgery but we went through the cabinets and got rid of everything that was processed and unhealthy. Even things I thought were at least some-what healthy went after we looked over the labels.

So far this week we have been making positive changes and it hasn’t been so bad. LK is trying more veggies and drinking protein smoothies with me.

We also ordered the Withings scale – it should be here tomorrow.

30 things

loup
13 October 2010

Thirty things you may not know about my illness. Thanks to ChronicBabe.com for the idea.

1. The illness I live with is: fibromyalgia

2. I was diagnosed with it in the year: 2005

3. But I had symptoms since: childhood, the flare that really sent me looking for answers came in 2002.

4. The biggest adjustment I’ve had to make is: learning to cope with all of the day to day changes – if I do too much one day I could be hugging the heating pad for days to recover

5. Most people assume: I don’t know what people assume but I have been called hypochondriac

6. The hardest part about mornings are: getting the energy to get out of bed. If I can do that it gets better – but fibromyalgia has taken away my ability to be a morning person.

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: ipad I can watch movies, read and keep up with friends anywhere

9. The hardest part about nights are: not trying to force myself to sleep when I am not tired, it only makes it worse and gets my inner clock that much more screwed up

10. Each day I take 21 pills & vitamins.

11. Regarding alternative treatments I: think you have to find what works for you but I am wary of anything that claims to cure or reverse the effects of fibromyalgia. That just seems like people preying on the desperate and sick.

12. If I had to choose between an invisible illness or visible I would choose: invisible. People will never learn about these things if we don’t speak up.

13. Regarding working and career: I’ve not been able to work for about 4 years.

14. People would be surprised to know: that any given moment you see me I am in pain. I have just learned to cope with it – that and since there isn’t much we can do to fix it I don’t like to complain.

15. The hardest thing to accept about my new reality has been: embracing the things I am still able to do without losing myself in the grief over things I can not do.

16. Something I never thought I could do with my illness that I did was: road trip across country. It was painful but well worth it.

17. The commercials about my illness: annoy me because they don’t really show what fibromyalgia is like. Everyone looks so active and happy. The demographic is wrong too … you don’t have to be middle aged to have fibro.

18. Something I really miss doing since I was diagnosed is: hiking and working with horses

19. It was really hard to have to give up: working with animals as much as I would like – it just drains me but I love it and hope one day to find a happy medium

20. A new hobby I have taken up since my diagnosis is: journaling

21. If I could have one day of feeling normal again I would: go on a weekend trail ride / campout

22. My illness has taught me: that not everything needs to be done to perfection, appreciate the help I have and be grateful for my husband

23. Want to know a secret? One thing people say that gets under my skin is: pick one … people say a lot of ignorant things that drive me bonkers

24. But I love it when people: ask me about fibromyalgia out of concern and curiousness we can’t educate without interaction.

25. My favorite motto, scripture, quote that gets me through tough times is: It Is What It Is

26. When someone is diagnosed I’d like to tell them: listen to your body

27. Something that has surprised me about living with an illness is: how mean people can be.

28. The nicest thing someone did for me when I wasn’t feeling well was: took care of everything for me while I couldn’t muster the energy to do anything for myself. My husband – he is my partner, my soul mate, my caretaker, my advocate, my love.

29. I’m involved with Invisible Illness Week because: I am glad there is a week dedicated to invisible illnesses but I think every week should be Invisible Illness Week

30. The fact that you read this list makes me feel: hopeful that there are people out there who really care. Thanks!

New Doctors

loup
20 May 2010

I have an appointment this afternoon with a new GP. I am a little more than nervous. Why? Well, when you have fibromyalgia getting a doctor who understands it or has any compassion about it is rare.

You wouldn’t believe the slew of asstards I had to endure before I found doctors who not only knew what fibromyalgia is but they understood just how devastating it could be.

I am trying to look on the bright side – I’ve not had an asstard since moving over to UNC and Duke. But if I’ve learned anything “there is one in every crowd”.

I wish my doctor didn’t go to a specialty but whatever makes her happy. She is a great doctor and people are lucky to have her on their side. I will just miss her.

So here is to new doctors – let’s hope I don’t have to “train” them. *grins*

Fibromyalgia

loup
11 May 2010

May 12 is Fibromyalgia Awareness Day. But to steal a line from the Autism Awareness campaign – in this house, every day is Fibromyalgia Awareness Day.

Fibromyalgia is the cruelest thing. Just when you think you can not go on one more moment the pain and the brain fog lets up — almost to a point where you start to feel normal. You find tiny spurts of energy where there was none before and you think maybe now you can get on with your life.

Then bad days start to creep back in, you try to cope. You try to keep your head up and remember that good days are just around the corner. Then bad days are there full time and you start to forget what a good day feels like.

You try everything – nerve blocks, infusions of medicine, pills, massage, hot water, walking, removing sugar, removing chemicals, adding oils and meditation. Heating pads, sleeping pills, breathing exercises … you become desperate to be the person you used to be.

You realize that person isn’t there anymore. You are forever changed by this and there is no going back. You see the world differently. You move slower. Your obsessions change.

I am grateful that I have LK. He is the best thing that has ever happened to me — healthy or sick.
But when I am sick – he has the patience and the understanding that I need to get through the day. I am my own worst critic, judge, jury and enemy when it comes to all of the things I can no longer do or be. He helps me with that. I am also lucky *if you can call it that* to have friends and family that share in my pain. Truth is you probably know someone with fibromyalgia. I am glad that I am not alone – though I wouldn’t wish this on anyone.

I have lost my balance … I fall a lot now. Before I was diagnosed I think the last time I took a nasty spill was when I was a teen-ager. Now, seems like a few times a month I find myself on the ground without reason or cause and a couple of times a year it requires ice packs and x-rays.

Of course trying to explain Fibromyalgia to someone who doesn’t have it in their life full time is like trying to swim through pudding. You get the idea but you never really understand what it feels like until you try it.

Then there are the skeptics who think it is all in my head … they don’t understand or care that I can’t work even a part time job from home because of this crap. It is all in my head because after all, no one has fibromyalgia until YOU have fibromyalgia.

So at least for one day – try to put your skepticism aside, try to understand that not all disabilities are visible, have a little patience, and please be gentle. Because we didn’t ask for this, and if we could be a different way we would in a heartbeat.

Learn more about Fibromyaglia at the National Fibromyalgia Association.

Volunteer

loup
15 March 2010

I am a big fan of volunteering my time to causes that I support. With my back being as bad as it was and with the fibro I was unable to volunteer for the last 2 years and it really took a toll on me and my self-esteem. The fibro is so bad that I can’t work a regular day gig kind of job where there are deadlines and schedules, because I never know from one day to the next whether I am gonna have enough spoons to get out of bed much less get into a job and be productive.

I volunteer for a very selfish reason – it makes me feel good. Being able to work towards a goal and helping out with something I care about makes me very happy. My time is valued and appreciated. My work does something good. I get out of the house and meet with people who are most likely animal loving misanthropes like myself.

Beside just getting out there and doing something the first bit of advice I would give is make it a cause you relate to. If you don’t like helping people – don’t volunteer for an organization that helps people. If you don’t like animals, don’t go looking for feel good days working with animals. It really is as simple as that.

Volunteering and being active with the causes that you care about is really the best way to make a difference.

Back Update

loup
3 March 2010

Yesterday I had Radio Frequency Ablation on S1, S2, and S3 nerves. It went well. I love the staff at Duke Pain Clinic – they are the best.

They told me I would hurt for a few days and be sore but after that I should be pain free. Well no more pain from this issue. The fibro is still with me but the disc issues may all but be resolved. The procedure “burned” off the nerves in the offending areas and it will take 6 months to a year for them to grow back. Good news is at least I will have that time pain free and at best the nerves will grow back in a different spot. Tiny bit different but all the difference to me.

Today I hurt – a lot more than usual. It feels like achey bone pain that arthritics know so well. So bad in fact I am having issue sitting and lying on my back. So I am lying on my stomach and taking it easy.

I am hopeful that this works and I have one less issue to deal with.

Happy Birthday to Me!

loup
13 January 2010

I was in Florida for my birthday visiting family. Someone should send those people the memo, Florida is NOT supposed to be cold. It was warmer here in Chapel Hill. But anywhooze – we made the best of it.

Thirty-seven years and this is what I have learned.

You can’t love anyone until you love yourself.
Laughing at yourself and others isn’t a crime. Sometimes funny shit happens.
There is no point in getting upset over spilled milk or doggy pee — clean it up.
Unconditional love is the ONLY kind there is – everything else is an act.
A “BUT” after an apology isn’t an apology at all.
Dogs make the best leg warmers.
If you can smile through the pain, there is hope.
No one knows you better than you know yourself.
Do what you need to be happy – the rest falls into place.
No matter how much you pretend, the TRUTH is always there.
———————

Some of the things that changed for me this past year.

I started therapy. I never had before, and I didn’t know until I wasn’t depressed that I even was – funny the things you learn when you aren’t watching for them.

I fell hard for HOCKEY. I don’t watch all the teams just the Penguins – but I love the sport, it is so fast, and graceful .. and VIOLENT. It is a lovely way to spend some time. Go Pens!!

I took a few irons out of my fire – afraid at first that I would feel like a failure because I wasn’t keeping up my share, but I realized I was doing more than my share and it was hurting me. Fibro is unjust and will stop you cold if you don’t watch yourself. I was running on empty. I realized it – made changes and now I am at a point where I can without guilt say NO to projects if I know it will hurt me in the long run. That is a significant step for me.

This year I am not sure what will happen, but I have hopes and some penciled in plans. = )

Cultivate Mindfulness

loup
1 November 2009

My therapist recommended a book called The Mindful Way through Depression by Jon Kabat-Zinn.
I am half way through it but I also got a few others.

The Mindful Woman by Sue Patton Thoele, Calming Your Anxious Mind by Jeffrey Brantley, and The Mindfulness & Acceptance Workbook for Depression by Kirk D. Strosahl

I never thought I was depressed. My entire life I thought I was just a cynic and that I had this realist view of the world. Turns out my chemical balance was SO off balance that I was / am SEVERELY depressed. After a few weeks on Geodon (a tricyclic) it seems like the shades have been lifted and sunlight can get into the room.

Now I know the fibromyalgia has caused some depression. The idea of not being able to do the things I used to do and love is depressing – and that isn’t going to change. BUT – this is something I think I was born with. A chemical imbalance, genetics, whatever you call it has been there and the fibro just made it worse.

It is a weird feeling for someone who has NOT been a “happy” person to be happy. To smile for no reason and to be enjoying things that I never thought I would or could.

It is interesting and I feel like I should shout from the rooftops (or blog) that depression is a sneaky fucker and even if you don’t think you are depressed it can’t hurt to do some reading. Besides — mindfulness isn’t only for the depressed people. It is a nice way to look at everything. Without shutting out the light and without rose colored glasses — I still am a cynic, and a realist – now I just smile about it.

For your convenience — here are the links to the books — my cousin Twila gets the Amazon credit since Amazon doesn’t allow associates to live in NC.

The Mindful Way through Depression: Freeing Yourself from Chronic Unhappiness

The Mindful Woman: Gentle Practices for Restoring Calm, Finding Balance, and Opening Your Heart

The Mindfulness & Acceptance Workbook for Depression: Using Acceptance & Commitment Therapy to Move Through Depression & Create a Life Worth Living (New Harbinger Self-Help Workbook)

Calming Your Anxious Mind: How Mindfulness & Compassion Can Free You from Anxiety, Fear, & Panic