What the Jules, What a life, WTF?

Stuff and whatever, ya know

Kelsey and I just left acupuncture. And, as a favor to me, Kelsey ran a red light before getting on the 5 north in San Clemente. How is that a favor? Well, I like to maintain a known condition, and god forbid I be relaxed a few minutes! I’ve been working from home the past couple of days. The weather has had us concerned about our commute, and the cold and damp had put my pain into full throttle. At home I can wrap up in a blanket or bring the laptop to bed. It’s a flexability I don’t have at the office. The rain, hail, and wind have been beautiful. I marvel at how our planet uses self destruction as a means to cleanse and purge and renew. What looks like a mess now will be so beautiful this spring. And really, the hills knew how to be muddy, post fire hills before you put your houses in them. It’s all about choices. I remember growing up in a beach town and seeing the seagulls come inland to line up in parking lots, away from the water. That’s how you knew the storm was on us. What do we do? Go down to the beach and stand on a pier! Surf in it! Yes, birds with brains the size of macadamia nuts have this figured out, and we can’t think not to drive a compact car through a 4 foot puddle of water. I’ll follow the birds! It was trash day in our neighborhood. The wind blew several full bins of trash over, and the trash blew all over. At 3:30 pm is it possible that I was the first person all day to notice this mess?my own barrel hadn’t blown over but a few of my neighbors had. So, I righted the bins, picked up the trash and went on my way. Was it so hard? No! Damn people, what’s up with you? I think I do need to go hang out with the birds. Stopping to fill Kelsey’s gas tank, then home to make dinner. Mathew is coming over. Then bed. I have a book to finish reading. I need to finish it so I can start another. I’m in that mode.

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Beginning to blog again, it’s about time

I have not blogged in a long time. I am not even sure why. It could be that I did not have the energy to say anything that went beyond 140 characters at a time, or perhaps the fact that putting my thoughts out into words meant that I had to read them, reflect on them, face them.

I suspect the latter. I am pretty sure I need to look into my head and face them, I think it’s about time.

It’s a new year. An arbitrary day when the sun comes up and goes down and we choose to mark it as a day to measure out the beginning of the next twelve months. We take this opportunity to close out the old and start fresh. We make resolutions and we try to forget what we did over the previous 12 months that we weren’t too proud of.

I had a pretty terrible year that was punctuated by the occasional good moment. Or I had a great year with highlights of shitty. Either way you look at it, I know I disappointed most who love or rely on me. Even if everyone else is happy with me, I blew it on my own watch, blew it for myself. I squandered my own precious time.

For every fantastic journey I took, be it a cruise or a roadtrip, I balanced it with a trip to the hospital. For each day I spent cuddled with my kiddo I spent another day curled up in pain.

I don’t want a 50/50 bad to good ratio. I don’t want a 60/40 bad to good ratio.  I don’t want to even put a number on it. I just want a life. The problem is, I don’t even know what one of those is. In fact, I know a lot of people that don’t know what a life is. I have friends that are bored or lonely or angry at their lives too, and don’t know what to do about it.

Even with Lupus, I doubt my life is much different than anyone else’s life when I really think about it. Seriously, how much time is there in a normal day for anyone regardless of their health, to get much done outside of work? It’s all about time. How much time do we have to have a life? And what do we do with it?

So here is my day, dull as it is. It is probably similar to the day of any woman with a career and a kid the age of my kid. In fact, I probably have it pretty easy. You can be the judge.

7:00 AM Get up, shower, dress, coffee, medications, feed dogs, eat, leave for work

9:00 AM Arrive at work. Commute is an hour, it’s not bad, along the ocean. Larry usually drives. We listen to music. I tweet and text. If we overslept we will stop someplace for a to go breakfast and coffee

11:30 ish Lunch in the office

4:00 ish Leave office for home

5:00 Arrive home play with the dogs

5:15 Straighten the kitchen, take out trash etc and prepare to cook dinner

5:30 - 6:00 cook dinner

6:00 - 6:45 ish eat dinner

If Kelsey Grace is home she will clean up otherwise I clean up

7:00 PM get some things done like start some laundry or fold laundry.

Mind you I am tweeting all the while

7:30 sit down for some TV

I will sit for awhile and if I have things to do I may get up and do them, switch laundry, walk dogs, random acts of domesticity.

The New Year goal is to be in bed by 10 but this is tough. My pain meds have this way of making me not want to sleep. My pain makes me not want to sleep. My brain is always going and going and going. That is the bipolar. I am playing the tapes of the day over in my head. I am planning work things for the next day or figuring out how I could have done the day better.

If I am lucky I can talk to Kelsey Grace at this time too. She may come home from work and we can chat. As she gets older she is around less and this saddens me.

I can screw around like this until about midnight then move to the bed and listen to music and tweet in the dark until 2 or 4 am. If I fix this problem of sleeping, I will be in bed by 10 and asleep by 10:30.

Now really, not much of a life, but what could we add to that? I could read which I sometimes do, I could go to the market, I could join a frigging knitting circle??? I should go to the gym but that is a risk for me and my lupus pain. Still, I should. I try to walk every night, that has stopped since the puppy has joined us, he is so small.

On the weekends I could add more movies, plays, dinner outings. I could make more local friends, but really we all know how much I hate people.

That’s how I use my time. I am not a joiner but I am an inviter. I will have anyone over that cares to stop by. I just know I am bored and I am lonely. I know it’s a new year and a great time to say I want to make a change. I know its a good time, I know its about time.

Go to bed earlier

Do more stuff

Make more friends

Be happy

Tip the ratio to the happy side

AND SUDDENLY SOMEONE DOES SOMETHING TO SURPRISE ME

I had lunch with humans today, humans that were not related to me and were not from work. Yup it’s true. I met people on my own and ate a meal and we talked. It was fun and I laughed and I cried and it was wonderful.

I can do this, I can have a life. I can be excited about getting up in the morning and doing something different and new.

It’s about time

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Today I wore my Attitude Cape

There are days when you can’t really put your finger on the reason, but it’s just a bit of a better day than the day before. Today was one of those days. Today I wore my Attitude Cape

When my day is good and productive, I know my attitude has a lot to do with it. I was productive yesterday and as a result I am sore today, but it doesn’t matter. I got good things done and I am proud of myself. I decided to carry that on into today and get some things done.To do that, I have to get up and put on that cape.

I came to work with the idea that I would get the ball rolling on some projects. I knew, of course that getting anything done meant relying on others to do things. Silly things, like returning phone calls, answering emails, finishing up their jobs and getting things back to me that were due days and weeks ago. Ohhhh silly me! Why on earth would I ever expect that because I was ready to get shit done that others would follow suit? Certainly not because expectations were set and disappointing me is rarely, if ever worth it. They know when the cape is on, they know when I am bullet proof and their tears will only make me stronger.

Rather than get into the details, I will just say that I went into action and I got my calls done. I talked to the people I needed to talk to and things are moving along finally. As a result, I feel good, I feel accomplished. I had to be pushy, flex my muscles a bit, but that’s why we have the muscles, right?

The attitude I pulled out today was my take charge attitude. It’s the attitude that gets me where I have to go, the one that makes people forget that I am sick. Sometimes I even forget I am sick when I put this attitude on. I wear my cape and I fly like Super Girl. You can’t catch me until it’s time to land. Oh by the way, when I do land, it’s a bit like a crash (but let’s not think about that right now).

When I have my attitude cape on my jokes are funnier (laugh at me damn it) and I need less makeup. I wear higher heels and I talk a little louder.

(some people say it’s mania, I don’t think so)

I think all of us have an attitude cape stored away, but here is the deal… there are some rules to wearing it. Attitude capes are not tickets to being a bitch, being rude, or hurting people. Attitude capes are the cloaks of ownership. Attitude capes are for taking control of what is yours to control. It’s for making happen what has needed to happen or needs to happen.

I used to wear my attitude cape every day of the week for years and years. I wore an attitude cape while I weighed 315 lbs. I wore an attitude cape while I was as poor as a church mouse. The only thing that ever robbed me of my cape, robbed me of my power, was Lupus. There are days I fight with Lupus, fight against it and win for the day or the week or lose for the day or the week. I can go to sleep wearing my cape and wake up with it scrunched in a ball on the other side of the room.

You know what I do then? I find something to laugh at, usually myself. I find someone to talk to, usually my twitter friends and my texting buddies. I play with my dogs, I listen to music. Sometimes I stare off into space until I can face the next thought.

If I said I never cried about it, well that would be a lie. If I said I never thought of giving up, that too would be a lie. If I told you that sometimes the weight of this attitude cape was too much, that I just wanted to crawl off to someplace quiet to be left alone, that would be the truest thing I could tell you on most days. The reality is, I do what I do because I have to. I am relied on and I am too chicken shit to let anyone down, for the same reason that the people I rely on are too chicken shit to let me down. We are all parasitically co dependent and for some strange reason it keeps me going. Miserably going, but going. So for as long as I can get out of bed, even if it takes an hour to get out of bed, I will do it. For as long as someone will drive me to work and prop me at my desk, I will get here and sit at my desk.

I do what I have to do for as long as I can do it, I just do. Don’t ask me how, I really don’t know. The magic is in the cape. I have magic boots too. I will write about those on a different day.

And in case you are wondering, my cape is purple… the red one is at the cleaners.

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Pain vs. Depression… take my depression please

I live with chronic pain and I live with chronic depression. If I was told I could get rid of one of them today, I would get rid of the depression.

Does that seem odd to you? Does it make some of you mad? I am sure someone would choose differently, and that’s fine.

When I have been depressed, the emotional pain seems infinite. I am in a darkness that feels horrendous, torturous and there is no relief. If I can find sleep my nightmares haunt me. When I am awake there is no pill that brings me even the slightest relief. If the regular meds didn’t work, nothing on the spot can touch this crap. Nothing is funny or fun, nothing cheers me or brings me joy. I simply wish for death and I see no light at the end of the tunnel.

Depression for everyone is different. I am bipolar. When it hits depression time I cry non stop. I stare into space and I cry. I do not eat or bathe. I move from the bed to the couch and back to the bed. I do not watch TV or tweet or facebook or read. I do nothing but breathe. I do this until it goes away or I am taken to a doctor or hospital.

When I sleep, I scream out from dreams I won’t remember. I ache like I have the flu and this will set off a pain flare if I don’t get it under control. The problem is that nothing gets it quickly under control.

Talking to me is like talking to an empty eyed mannequin. I am told it’s pretty horrible and frightening.

I have been hospitalized for depression. It takes the doctors considerable time to balance medications and figure out just how to get you out of the rut and back on the road to some semblance of well being. I have been over medicated and given lithium toxicity for my efforts. I have had my liver damaged from depakote and been turned into a zombie from certain other medications. Your psychological health can be treated and totally screw up your physical health. It’s a joy. So yes, take this from me any time, I will gladly give it up.

Physical pain is finite. I know it only goes so far. Pain medication can take the edge off or take it all away for a period of time. Even in pain I can find laughter and can be amused and entertained. My brain can function up to certain levels of pain. I can medicate myself to sleep for the most part and I can see myself alive even in pain. I know pain will end even if only for a short amount of time. And when you have depression, pain can make it worse so I would sure like to get rid of that extra propensity for depression.

When I am in pain I am still me. I am hurting and I may cry now and again but I am still funny and I can communicate. I soak in my tub and I even get up and cook when I can. I read and watch TV and movies and can make it into work with help. I am human, just a human in pain.

Medicine has gone a long way in the temporary treatment of chronic pain, and has done wonders in the treatment of depression. There are even medications that treat both at the same time. I take a medication that treats my pain and my depression. Pristiq took me out of one of my worst depressions ever, saved my life. I lay on a gurney in an ER ready to die, my family looking on as I finally just realized I didn’t give a shit about anything anymore.

At least when I am in pain I still care.

Did a pink pill make me give a shit? Ya it really did. It sure wasn’t therapy. I can’t see another therapist. 20 some years of therapy and I am pretty talked out. 20 some years of therapy and I now have no governor. I talk about anything and everything.

I don’t want to have to take a medication to make me care about being alive, to care about my family and my home and bathing and going to work. That is depression for me.

With pain I still care, it’s just hard to do. With depression it just doesn’t happen. The will to do is gone.

If the genie in the bottle gives me the choice one day, take my depression. I gladly give it and keep the pain.

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Dear Head,

Since the day I was born, dear keppelah of mine, you have been loyal. You have never left my neck and shoulders and have faithfully held fast to my ears, face and hair for as long as I have known you.

My dear noggin, holder of my brain, keeper of my wisdom and dreams, you appear to those around me to remain intact and even in my toughest tumbles have keep the insides in and the outsides out.

Within the bone and and brains and gook that is the great weight on my shoulders I have found great beauty. Often I see fantastic stories and the answers to problems I thought unsolvable. With the eyes you grasp firmly to, I have witnessed a great many things both wonderful and horrible. I have seen my child born and have seen her suffer. I have seen myself in the mirror at my worst and have admitted my own beauty on a rare occasion.

Within the walls of you, head, I have done more than my body has done in this world.

It seems that I owe you a lot doesn’t it?

I feel then like a brat coming to you with a request. I may seem selfish, and you may feel that I do not appreciate the gifts you have given me. I want you to know that that is not the case. I ask you with all the humility I can muster.

Please head, I ask for no more migraines. I ask for fewer nightmares, and less terror in my random thoughts. Dearest keppie, please may I have fewer obsessions and let’s throw the kybosh on the compulsions?

Oh and focus, can we focus a bit more? I know you blame the lupus and the fibro, the bipolar and the meds and stuff but let’s work together as a team. I mean really… I am not going anywhere and you are not going anywhere. We are kinda inexorably stuck together…don’t you think?

It seems like I am asking a lot, but don’t you think you would be happier too?

I would just like you to give this some thought. You can let me know in your own good time. I think I will be able to tell your decision by how we feel anyway.

Thanks for your time,

Love and Stuff,

Jules

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Canes and Pains, Peeples and Puppies, and taking lots of Pickshas

Yesterday was a long week wasn’t it? In fact, this month has been a rather long year already.

This is what, Febrember the 300th and I am exhausted, there are about 1200 shopping days until my unbirthday and I just need a nap.

One month into the new year and I have had scads of super cool company at the house, I have been playing mom to a new puppy, and I have been reframing my old friend lupus and trying to make it my bitch.

Thing the first, let’s get this out of the way. Eliza the floral cane is serving me well. She is helping me keep my balance, she is helping me out of the car, up the stairs and out of chairs. And here are some unexpected benefits to walking with a cane: a weapon and a measurement of personal space. People are staying the hell away. They fear hurting me and fear me hurting them. Both valid.

I am strutting along and I got my cane on. I don’t need this for a bum leg, it’s for balance so it is not slowing me down, in fact it is speeding me up. #canesaresexy

Now the pain. Well pain is pain. It sucks, there is no other way around that. I cannot seem to make it better for any great length of time. Lupus is a spiny bitch that won’t let go. I have noticed that the plaquenil is helping. Duration and intensity of pain is less and the face rashes and mouth sores are markedly decreasing. Perhaps I can make lupus, if not my bitch, at least a willing sub?

I have been meeting tweet peeps this year. It’s been wonderful to make these friends real in my life. I had met a couple over the years but in January alone I have met 5 twitter friends and had them in my home. I have had an absolute blast with each one. I have plans on seeing them again and adding a few more to my role of people I have me in RL.

I am not the “get out and about” type so the social networking world has become a real meeting place for me, that phone I carry with me houses my friends. To have humans step out of that screen and give me hugs is astounding. Thank you to my friendly tweeple. I love you.

Now the puppies. I have had Denny Crane the amazing Shih Tzu for 5 years. He is the most awesome of dogs ever. I thought there would be no equal. Then Christmas rolled around and my husband gave me another Shih Tzu that I named for the author of Breakfast At Tiffany’s “Truman Capote”. What a little firecracker he is. Not only has he brightened my life, he has brightened Denny Crane’s life. He has made him a puppy again, made him more energetic and affectionate. Mind you, he is a puppy and thus a first class pain in the ass, but he is adorable and sweet and soft and chews on everything. We love him. When he is done disrupting my entire world, he will fit in nicely.

I take and post a lot of pictures. I am probably and exhibitionist. I do tweet from the bathtub. I share my life with you because frankly, I feel like many of the people who should be interested just aren’t. My Parents and Parents-in-Law, sis in law if you are reading this I am not at all referring to you. You of course do not have to look at them, but if you are not from CA and want to see it, my pics are a good start. If you have not been on a cruise, my pics are a good start. Like puppies? My pics are a good start.

I look at other people’s pictures on twitter and FB and Tumblr. I look at the subjects and the backgrounds. I look at your clutter and your paint choices and what you have on your TV. I look at the magazines on your coffee table. I expect you are probably doing the same.

Now I am into the twitter collages. I am trying to get people to send me pics of things by subject and I put together and post collages. It’s fun and we all get to see a small slice of twitter life.

Ok, nuff said for today. What is it now? Juliannauary 26th? Ya, time to get some work done.

Peace out girl scout.

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Dinner tonight

A slice of my life, no embellishments.

This morning I took chicken from the freezer and put it in the fridge to defrost. I knew it would still be a bit frozen when I got home but I could deal with that. Lupus fatigue hit me hard this afternoon. I slept in the car on the ride home. I fed Truman and planted myself on the couch when we got home. Moving didn’t seem to be an option but I was trying to rally some energy. 2 hours later I asked Larry if we could have take out. I thought I might want Mexican food. Rubios was the decision. Larry got up and I asked if I could stay home. He said he would make something with the chicken. “ok I’ve cut up the chicken can you cook it?” I said “no I wanted take out because I didn’t want to cook” “well that’s not happening” Larry cooked the chicken and I spiced it and finished cooking it. He assembled quesadillas. I took the support of my twitter #spoonie posse as my strength and I pushed on. I ate and laid back down. No one has touched the dishes and I won’t do them, I refuse. For me and in solidarity for my posse. In fact I am going to ask for a soy ice cream bar and coffee stat!

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Chronically Awesome!

Never feel you are broken, you are awesome!

Re blog if you are a member of the awesome group of people on tumblr winning the war day by day against chronic illness. We aren’t sick we are awesome!

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Sexual Health and Chronic Pain

I remember the first time I heard the line “not tonight, I have a headache”. I was too young to have any idea what it meant. Everyone around me laughed, so I laughed too. It wasn’t until much later, when I understood what it meant, that it made even less sense to me. I wished from that moment on I could go back to not knowing what that lame line meant.

I have never, in my life understood making excuses for not having sex. If you don’t want to have sex, simply say “Hey, I don’t really feel like doing it tonight, I’ll give you a have a rain check.” If you are not in a place in your relationship where you can be that open with your partner, I can tell you right now that using pain as an excuse is really not the way to go, trust me. Pain is not your excuse to skip sex. Rather, pain is your reason to have more sex.

Before you write me off as totally nuts, give me a few paragraphs to explain myself.

There is no way I am saying that regardless of your level of pain you should be always saying “yes” to sex. I am not saying that you should ignore your discomfort and say “yes” to sex even if you aren’t feeling up to it. What I am telling you is that there are many ways that sex and intimacy can help you to overcome pain.

I am not a doctor. I don’t even play one on TV or the Internet. I am a person. I am a woman. I have chronic pain, I am married, and I like to have sex. So I speak on those simple levels of authority. I know what I know based on my experience and on some research. This is research you can do too, if you want to.

Let’s start with the silly headache story. Research at Columbia University (and bedrooms all over the world) shows that orgasm releases endorphins which in turn can relieve and often remove the offending headache.

Obviously, I have made a simple statement with far reaching implications. I can take the endorphin releasing orgasm now and apply it to so many different aches and pains across the body. Tiny steps in logic tell us we have some great medicine here in the endorphin. We even know where to get it.

That does not solve another problem: when it hurts enough that you don’t even want to go there.

Ya, I hear you.

You don’t have to start with the full fireworks show, you can start with sparklers. This is especially true if your chronic pain has kept you from intimacy for an extended period. It might be awkward and painful to try it all at once. Many couples that experience chronic pain or any chronic illness in the relationship have grown apart on this level and will have to work to achieve intimacy again. It’s almost like you are a new couple again. Don’t expect that you are going to pick up where you left off before the pain started.

You can start slowly and still get some benefit from our friend the happy endorphin. This is not a “go big or go home” situation. What are you most physically and emotionally comfortable with?

Here are some simple suggestions:

Just One Part: Hands, Feet, Neck, Shoulders. Pick a part you would like touched, or rubbed. Use a lotion or oil you both like the smell and feel of and take turns massaging just that part for each other. There is no pressure to go any further than just that part.

Hair Brushing: I don’t know about you but I love having my hair brushed. 5 minutes of having my hair brushed can be both intimate and calming. Later if you want to combine that with some other things… well ya…

Bathing: Showing or taking a bath together can be fantastic. If this is still too intimate after an extended period of no intimacy, perhaps even some time in the hot tub?

Talking About It: There is a reason that “sexting” and phone sex are so popular. Words are very powerful. Why not create a comfortable environment for your words. Sit together, lay together in the dark and hold hands, or sit in different rooms and text, whatever works for you: now use your words. You never know where it will lead, wherever it goes: let it.

The goal here is also, in part, distraction. Intimacy and closeness with your partner is an excellent distraction from this lousy chronic pain. You are able to work with your body in a way that is pleasurable instead of painful.

I started this project with the singular goal of compiling other articles. Then I wanted to write an introduction for those links, then this happened. My goodness. So, here are some articles by people that are probably a lot smarter and better qualified than I am on this subject:

How People In Chronic Pain Can Revive Their Sex Lives

Sexuality and Chronic Pain: Mayo Clinic

Chronic Pain and Sex: A couple’s fibromyalgia story

Wired.Com: When Sex Is A Pain

What to do when Pain Meds Dull Your Sex Life

7 Reasons Sex Does A Body Good

Thank you @cinnamaldehyde and @beyondempathy for your inspiration

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That was a lot for a lazy day

I felt like a bucket of—- something gross and unrecognizable let’s just say, when I got up this morning. I put all potential plans on standby and prepared to hibernate. Husband made a fantastic breakfast and that gave me the energy to get dressed. That perked me up enough to straighten the sofa cushions, which brought my attention to the need to mop the laminate floors. Well I may as well bring the laundry down. Loads can run while I kick back and watch a movie. Laundry running, sofa neat, floors clean—- if I just clean the downstairs bathroom I’ll really feel good about myself and can watch my movie guilt free. It’s a full bath downstairs but the tub and shower are never used. Counters, mirrors, toilet, oil the wood cabinets. Why am I in the backyard trimming a tree fern? Cutting back a rose bush? Weeds around the lemon tree? Not anymore. Camilla is pruned in a lovely box shape 4 feet high. Husband helped me bag up 3 lawn bags of clippings. All done by 12:30! It’s 5:00 now and I’ve watched 2 movies. The final load of towels is in the dryer and everything is put away. I feel good about what I’ve done, and a little silly about bribing myself to do it. I stayed medicated and hydrated. Now I’ll put a roast in the oven, and who knows, maybe watch another movie! One thing is certain, I deserve a break, no guilt and no shame from this chronically awesome chick. Someone else can vacuum the stairs.

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