29 01 2010

All day I am fighting this intense exhaustion.  All night I struggle falling asleep.  The sky is overcast with a brilliant orange glow.  I want to go next door and climb into Jax’s bed.  I could always claim that I was sleepwalking.  The LA night is restless.,  Helicopters, police sirens, and food in the fridge are screaming at me.  I’ve been off of Enbrel for 2 months.  It’s been insane to feel my disease crawl back through my veins, my joints, my blood.  My feet hurt in ways I didn’t know was possible.

Originally, I got off Enbrel to find out if it was the culprit in m sleepwalking.  That turned into forgetting to re-order it which evolved into delivery to the wrong address.  Now, the full-blown effects of RA are coursing through my body.  The Methotrexate does little to nothing it seems.  Every morning now I can feel the effects of RA wearing my joints down, wearing me down, eating away at my life.

What a horrific disease.  When it is contained, I forget how badly it was destroying me before.  For 3-4 hours every morning I can’t move, think or function.  I’ve never felt the exhaustion of life so vividly.  And I will say again how absurd the name is.  The word arthritis conjures up some lame issue very old people have with their joints.  If I were in charge of “things” the first thing I’d do is give RA a proper name.  One that brings to mind utter untreatable agon and helplessness.  Now I have forgotten how long it takes to feel the beneficial effects of Enbrel.  I think it’s about one month.  I can’t wait. If I wasn’t a freelancer then I would’ve lost my job because of the disease’s evil nature.

Jax and I have a cuppa tea almost every night. He’s very kind that I limp a lot and is always helpful.  Time will tell if Jax changes his mind about us getting back together, but each day I feel it slipping farther away.  Time creates more time.  I hate when people say “at least you have our health”.  I don’t!!!!  I don’t have it in any way.

love sasha xoxoxo



28 02 2009

Brief background for any new readers: Info about me (sasha) and my life is in the “About” page so you can catch up on me there.  Feel free to comment on your life and your issues.  The readers of this blog are creating a community and many have their own blogs that I have created links to on the right.  Check them out and feel free to tell me your favorite ones.  I thought we’d do a little top 5 blog links contest for the next 30 days.

Jax left around 6 months ago, but lives an apartment away.  He’s not willing to say we are never going to be together again.  I’ve tried in numerous ways to move on but over the next 6 weeks I am forcing the issue by having a JAX BLACK OUT starting this Monday.  (Why this Monday?   –  because he helps me do my laundry and I’m not mentally prepared to do that on my own yet.)  Also, if there’s an emergency like there was last time I tried this a few months back then we are allowed to communicate temporarily.

The great thing about dating with a chronic disease is that this issue applies to everyone with a chronic illness, not just a specific type of illness.  Many of us have been through the true love in our life that has left after 4-5 years.  That’s certainly my situation w/ Jax.  So in an effort to move on I signed up with a few online sites and started forcing myself to go out to events again.  At first I pushed it too hard.  I was going out so much that I ended up crashing back against a 3-4 month wall (that’s why I was offline for quite some time).  Now I think I have a better balance and am saying home more than I want, but at least nit making myself worse.  I also asked the advice of friends about whether to mention my illness straight away or to keep quiet.

(Read on for more on DATING w/ a CHRONIC DISEASE, Dating Print-Outs, and Bad Kissers need not Apply)—> Read the rest of this entry »

Week’s Web Highlights

11 05 2008

This week’s awesome mentions on other sites PLUS GREAT articles/blogposts/sites: Sites mentioned include: Atomic City, Help My Hurt, Bluefingers, Life With Chronic Pain, my blogroll and Medlinks… Click for the Full Scoop & All the Links. Read the rest of this entry »

Death, Love, and Living

23 03 2008

ON NEEDING A LOVER NOT A CARETAKER: I’m very happy that Jax has gone out to the movies. Normally he would’ve stayed in with me and I would’ve felt so bad that I had limited his life. He’s working hard on breaking the cycle of being a caretaker-type. He’s off and running and it really seems to be making our intimacy grow. I’m grateful that we are moving into a different chapter. The last thing I would do right now is think about bringing in a baby! That would be a nightmare right now…but time is not on my side on this front and I’m so depressed about it even though I know it’s a waste of time to be so.  (perhaps with my enbrel being out of my body for so long it makes sense that this is my frame of mind).  But when you’re sleeping for so long there is so much time to think about useless matters such as past lovers and past tears spent on them.   I can’t imagine this life without my lover.  I can’t imagine life without being touched in those certain ways that make your whole body tingle and shiver.

Jax reminded me that most men would’ve left me by now – and he’s right even though it was an odd and rather rude thing to say.  Since I’ve been sleeping for about 50 or so hours I’ve had a lot of time to think about the statement and my life.  I’ve had a number of boyfriends leave me because I worked too much, ran my own company and therefore had a lot of responsibilities, or they simply felt I did not need them enough.  In many ways i feel like i’m Maryann in Sense and Sensibility.  She has all these high notions of love but comes to see that a more steady love is far more preferable.  There is deep passion in a steady love; I believe even deeper than the fleeting hot n’ fire loves.
I once had a girlfriend for several months and it is just not the same thing.  I’m sure she would be tender and not afraid to be my lover during this time – but the major difference is that she could make love to me without fear of injuring me worse.

Once, I was seeing a frenchman for a week or so..I had him over for the first time.  We were racing around my old flat naked and having a great laugh.  We had never had sex – but we found ourselves without clothes and pretending to be rulers of my mighty kingdom.  (Read on for my view on death, love, and living) Read the rest of this entry »

The Real Zen of RA

6 03 2008

After writing about meditation and the ups and downs of yoga I realized I didn’t finish a thought I had put out there. I’m trying to find and create a better balance in my life now that RA is a reality, lupus is still a question, and pancreatitis is a definitive struggle.

Outside of my attempts to find immediate enlightenment, I’ve talked to Jax about creating a new after-work plan. I get very stressed out with the idea that after the office and dinner I am “supposed to” hang out with Jax or chillax or something at least half the week or more. This is just a rule I feel is out there – this has not been stated by Jax in anyway. What I’m getting at is that I feel that Jax gives me so much that the least I could do is step away from my work each night to relax with him. This is absurd and highly unrealistic and was causing me stress to make happen. So I asked Jax if I could just do that on the weekend and one week night. Otherwise, I’ll just do my thing and get my stuff done after dinner. He totally laughed and thought I was really nutty. He did that “fine with me but you do know i don’t care” thing. He also added, “you do know that you don’t have to ask me things like that ever. You know that about me, right?” Of course I do which proves this has been self-inflicted torture.

The guilt I feel is for the thousands of times that Jax has really helped me in a health crisis, food crisis, mental crisis, work crisis, employee crisis, etc. I’ve tried the approach of refraining from asking for help all together but that destroyed us for that time because Jax has proclaimed that he wants to be helpful. He said it makes him feel wonderful to be able to help. I do help him as often as I can, but it would never add up.

So what I’ve realized again (I forget this and then remind myself of it every few months) that he’s with me as a choice of his own free will. Jax could Read the rest of this entry »

Your Searching For… A Must Read

17 02 2008

Today I’ve decided to respond to the topics that people most commonly do searches for when they come upon this site. A lot of people visit this site to validate their feelings about a particular medication such as Methotrexate, prednisone, and more… Some topics I wrote a brief blurb about are: Being a Caretaker, Dieting, Couples Therapy, Dealing with Health Insurance, Chronic Pancreatitis and my pump, Rheumatoid Arthritis, Running my own company (being a workaholic), real life for the caretaker, and others as the searches come in. This page is based on reader requests

URGENT DANGER : Some of you are searching for stopping PREDNISONE or prednisone cold turkey…do NOT ever stop cold turkey. you could easily die from adrenal failure. Please see a doctor and have them taper you off. I accidentally did it myself once and it was a huge mistake. (More on my Prednisoneoverview at the very bottom of this blog).

This is an example of some recent searches that I have then been turning into overall answers to help curious readers.

describe pancreatic attack prednisone moon face
opinions of real people who take methotr arguing and ra
break up relationship chronic illness type doctor pancreatitis
couples and confessions pancreatitis stiff joints
taking care of sick girlfriend what is happening in acute pancreatitis
chronic rheumatoid arthritis prednisone cold turkey
dance sexy prednisone big cheeks
prednisone moon face alternatives to prednisone for rheumatoi
stopped prednisone can not stay awake

difference between ra and lupus
and my personal favorite: rheumatologist sexy

Read the rest of this entry »

swollen like marshmallow man

8 02 2008

that’s me.  i’ve been a miserable bitch lately.  i’m sure of it.  i’ve accidentally yelled at Jax over 3 times this week.  I usually don’t yell at him that much over 3 months.  it’s just been a struggle to maintain peace and joy lately.  (Click on more to read about our couples therapy this week or about Jax and I).  I saw old friends and it felt so good to have their arms around me for that moment when you hug and say hello.  I’ve had a couple of dreams where I’m making love to a woman  that shows up in my paintings.  I just need to be felt up on a dance floor or something.  I just need to feel hot for a moment.  I know I’m not right now (171lbs due to prednisone).    I want to make Jax feel so hot he climbs up the walls.

Plus, work’s been tough now that i’ve started a new apprentice and have zero time and too many clients.  With the predicted recession which has already hit my business it would be dangerous to turn work/clients down.  But as those of you with pancreatitis must know – it’s also dangerous to not let my body have a break.  It’s been non-stop since the christmas holiday party season (literally) this has always been the busiest time of my work (dec-august). plus a friend died at 27 yrs old and ive been deeply upset aboutit this week.  he lived in zimbabwe.

i started on enbrel one week ago.  now all of my old meds have worn off i am so swollen like a blimp or marshmallow man.  i feel down and angry about things which ticks me off since i usually think about positive things.  i thought i felt the enbrel working but now… (read more about prednisone, weight loss plan, and  couples therapy) Read the rest of this entry »