Sjogren's Syndrome and Vanity

I haven't blogged in a few days. I had infusions that gave me horrible side effects. I mean horrible. I was so sick I couldn't even look at the computer, let alone pick it up.

 Sadly, when you're sick with an aggressive disease it doesn't matter how dedicated you are to your craft, you can't always practice it daily. Fortunately it is waiting for you when you can.

I like this picture of me, which is strange because I almost never like pictures of me. It makes me sad now. Or, rather, bittersweet, because I still like it but I wish I still looked like that.

It has nothing to do with age. This picture is maybe 2 years old. It is from my disease. My cheeks are full and round now because my partoid glands have swollen (and others, I'm sure) because they no longer produce saliva. 

The lack of saliva have caused the glands to get get inflamed, hence the swelling. My eyelids droop from a similar problem. And these things aren't just cosmetic, they hurt!

Losing so much of my hair has been the hardest for me. I had thick luscious hair that I (usually) appreciated. I only wore it shorter when I first got sick for ease in caring for it. I didn't want to blow dry a full head of hair everyday and I knew I would if it were longer.

So, I'm bummed out today. My body hurts all over- hips and lower back; entire left leg and foot; left elbow to wrist; right shoulder; right side of my body; neck; migraine, and i'm so sensitive that if you touch me it hurts. Oh, and my swollen cheeks look stupid and hurt.

Not that I wanted to write a laundry list of Sjogren's sufferer's average pain, but it isn't a bad idea to let everyone know what's up with that.

So, I just finished infusions that gave me a week of horrendous side effects and tomorrow I have a procedure at the hospital that might have me staying a few nights at the hospital. It looks good for an over-nighter (or more). Yay.

The fun never ends for us. That's why I'm going to host a fund raiser in the new year. I don't know what kind, but I'm going to do it. I'm going to get the word out about Sjogren's Syndrome.

peace and love,
sunee

infusions and medical care

   I have spent the past two days having IVIG infusions. Now, before I feel any benefits from it, I feel a massive migraine and terrible nausea. I love side effects. 
   I talked with some very sweet people in between the 50 million times I had my blood pressure and temperature checked. Really? Does it have to checked every 15 minutes? 
   I wanted to read, maybe write. I thought maybe I'd feel good enough to blog from my phone. Yeah right? I couldn't even blog from home!
   I think I forget from month to month just how difficult this is on me. But I am a trooper. I show up with a good attitude and a sweet disposition- much sweeter than most of the medical staff, I'm sorry to say. Probably because they're so over worked. Like teachers, but with more blood.
   I feel for the nurses. Patients are cranky, bossy, impatient. Not me. I'm sweet, easy going. Why give the nurse a hard time? I never understood giving nurses or even waitresses and waiters a hard time. Just because their job is to serve us doesn't mean they're subservient.
   But, I don't even get angry when my doctor runs late. Even 45 minutes. The thing is I want him to take his time with me as well. I may hold up the line (and I have on many occasion), so to speak, so I need to have a good attitude about it. 
   I say he because I'm thinking of my rheumatologist who always thinks f the patient, not some 15 minute rule that a money hungry person invented for our health care. How is 15 minutes enough when you've got serious medical problems. And, I'll admit this to everyone, I won't rush when I see the doctor no matter how many people are waiting.
   We're all responsible for our own well being, and behavior (as I mentioned in the earlier part of this tangent). We are also our own best advocate.
   When I need to spend time with the doctor, bring a list and go through the items. I always forget a few, but for the most part, I leave my appointments satisfied. No one can do that for me but me- generally speaking. 
   Sometimes we need to send an advocate to pick up a prescription or sample or a referral. I have a great advocate, my husband. I hope everyone, especially those who are sick, has someone who can help with those things, and the million more that come up.
   Clearly my mind is everywhere tonight. This is a bit of a salad bowl of thoughts. It's like the essay exams that you want to make sure the teacher knows you know the material so it becomes an information dump. I beg your kindness as I will bring in a new story tomorrow. I honestly couldn't decide which one tonight.
peace and love,
sunee

what a pain and the end of "Boys"

   What a pain pain is! It slows us down. It makes some of us cranky. It keeps us from living a full life like everyone else. It requires a certain amount of attention. It hurts!

   Everyone wants to suggest ideas to help me feel better when my pain gets to a level that is just ridiculous. They mean well and it's well received. 

   The problem is that at this point I've tried everything already. I've done the warm (and hot) bath with epsom salts, with a bath soak for achy bodies, with just water.

   I've tried treating myself to ice cream and other delicious snacks, and although I still hurt I am well fed and very clean. I take every suggestion with love and graciousness with which it was intended. 

   Just by having the love around should help with the pain, even slightly, especially if we think of those women who have no one to help them through these terrible diseases. I'd rather have too many loving suggestions than none at all. 

   I also try to ease my pain not be a pain. I know we suffer a lot. I suffer terribly. Not one thing has helped me. I don't get a break from pain ever. It's been really horrible for a long, long time, but I don't act like a brat simply because I'm sick so I can. 

   For one thing, I would never want my children to see me behave like that! I would feel like a hypocrite because although I believe in letting people help me, I need to be self-sufficient, too. The other thing is I would never want to take advantage of the people who truly love me and worry about me whenever the newest problem pops up.

   So, If you're in pain don't add to it buy being a pain. It never makes anything better!

The end of "The Boys From this Neighborhood"

Steve had been the one to find her in the alley that night. The boys had all run away when they heard a car coming. The third boy had been taking his turn raping her. They left her in a bleeding heap on the asphalt. Steve had been the one to take Suki to the hospital, vowing to bring the boys to justice.

                  Suki remembered how he tried to wipe the blood from her face and, how he had stayed by her side until the doctor examined her. Her father had been so grateful that Steve had stayed.

                  Seeing Suki alone of the streets at night, Steve came to her immediately. She told him about the party, the girl and the boys.

                  At Steve’s request another officer escorted her home quickly, and she felt secure knowing that he would be by to check on her later.

                  Back in her apartment, Suki listened as Steve and his partner approached the boys in the alley. The music died down. She began to feel cooler, her clothes no longer sticking to her body.

                  Suki could hear the sound of the drunken girl sobbing. In the distance as she touched her cheek where the stitches had been. That girl was lucky; the boys didn’t hurt her.

                  She heard the whistle of the eleven o’clock train. Now I can finally rest. Suki thought. They won’t be able to hurt anyone else tonight.

be organized! and section 3 of "Boys"

  I'm sure we've all noticed that the less we talk about things and the more we work on them the faster they get done. It's almost miraculous how that happens. Things start flying off the "to do" list!
  Just the slightest bit of focus and it all comes together. So why is it that most of us are struggling to get things done? Complaining about our workload? Or homework? Or, both! It is simply a matter of organization and getting each thing done. 
  I've had a lot of work to catch up on for my class because I was so sick during the assignment's work period. I called and asked for an extension and then I got to work. I wanted to write this blog, write a new short story, write about my new story for my assignment and various other tasks, plus research I'm doing on my own for my stories and for sending out my stories.
  WHEW! That seems like a lot since I'm not well enough to work all day. It's about making good use of the time. Not playing around online when I'm supposed to be researching, or writing or...whatever! I don't know if it's discipline so much as having a plan. Being organized makes a big difference. 

At least it does for me!

Here's Section 3 of "The Boys From this Neighborhood"

Suki closed her eyes as the boy unzipped his pants. She could hear him saying something about being the best fuck she’ll ever have. He forcefully pushed her legs apart. Then she felt the pain of him thrusting himself inside of her. A burning pain shot through her, as if he had punctured her soul. Her flesh was ripping apart against the asphalt. She bit her upper lip to keep from crying out, afraid to anger them. Instinctively, her body jerked away.

                  Angered by her lack of cooperation, one of the boys took out a switchblade and held the blade extremely close to her cheek.

                  “Stay still you stupid bitch.”

                  Suki concentrated on the pain of her hands, thighs, and buttocks being torn apart by the rough street. She could not bear the thought of this boy being inside of her, that he was hurting her, or that he was violating her. She focused instead on the blood dripping from the open wounds and from her lip, which was now bleeding from the pressure of her teeth.

                  Feeling the heat of his ejaculation, Suki knew that he would soon be off her. Her feelings of panic were intensified once again when she heard their conspiratorial laugh. Then the next boy got ready to take his turn.

                  Boom ba boom boom. Wiping sweat from her forehead, Suki struggled with thoughts of how she could possibly stop this from happening to another girl. They had been partying for awhile, and Suki knew they would be taking the girl soon.

                  How could I help, anyway? I couldn’t stop them before. Suki stared out the window and tried to think about her friend Janet. All of their friends from school were getting together tonight. It was an end of the summer party. Suki told Janet that she could not go, that she would feel too self-conscious around the boys.

                  “I’m having fun. I want to party here.” Hearing the girl shook her back into reality.

                  Suki took a deep breath and tried to block out the noise from the party. What could she possibly do for the girl anyway? She was worthless, white trash just like her mother. That’s what the boys had told her. She felt as if it were getting hotter.

                  Suki clasped her hands over her ears hoping to make the entire scene, and he own memories, vanish. It only intensified her feelings of helplessness.

                  What had the counselor at the hospital said? “You can’t run from this, Suki. Face it head on. It happened, but you’re okay.”

                  Okay? Yeah right! Suki thought. The girl can’t fight them. She’ll lose. The girls always lose.

                  Suki could hear the girl telling the boys that she didn’t want to leave the party.

                  “Somebody help her, please,” Suki whispered. But her instincts told her that she was the only one that would help.

                  Suki studied the street. Surely there was an officer around here somewhere. They were always on the street in this neighborhood.

                  Boom ba boom boom. She saw the officers questioning a local bum in the parking lot of Stan’s liquor. She began to shake.

                  “I’m too scared. I can’t do this.”

                  Despite her fear, which had felt immobilizing, Suki moved toward the door.  “I can do this.”

                  She unlocked her front door with trembling fingers. A familiar sense of panic came over her as she stepped into the corridor. The graffiti covered stairway looked darker and longer than it ever had before.

                  The cars and people on the street terrified her. She ran all the way to the liquor store. Officer Steve Valmer noticed her right away. Suki had known him since they were young. They had always liked each other, but they never dated because her father said that their four-year age difference was too much.

peace and love,

sunee

story section 2 and stuff

I have to admit, I get steamed up over a few unnecessary things. One of these thing is when people complain about having a teeny tiny problem that they know I'm having a huge problem with because I'm sick, but they just complain all the same. 

Maybe they don't realize it's the same problem, even though I speak of the problem often. Since I don't agree with making a big, ugly scene I just let it go. But, I think it's funny how it's becomes a big deal once it's no longer just my problem! 

None of it matters, anyway. It isn't a big deal, I just wanted to point out that people can be mean and self absorbed sometimes.  I have been self absorbed in my life, so I guess I deserve it in return.

Alas, none of it matters because there are more pressing issues, like the next section of The Boys From This Neighborhood. Section 2 today. I hope the section was a good size. I'll figure it out as we go along.

From The Boys From This Neighborhood:

The sound of intoxicated laughter now filled her apartment. Suki listened as the girl continued to flirt with the boys, just as she had that night. Suki remembered swaying to the music, teasing the boys with her ability to dance. She had known she looked good that night: her long black hair loose, her five-foot-six curvaceous body barely covered in her short black dress.

            Suki caught her reflection in the mirror on the wall and examined herself. She knew that she could easily pass for twenty-one. Tonight her hair was pulled back into a tight ponytail, exposing her prominent cheeks bones and hazel eyes. She was wearing baggy Levi’s and a large shirt. She wore no make-up to glamorize herself tonight.

            Suki couldn’t help but listen to the drunken girl giggling over the attention from the boys.

            “I need another drink,” the girl slurred.

            “Coming right up,” said a second boy, another familiar voice.

            Suki thought back to that night, the night she partied with those boys, and shivered even in the sticky August heat. She had only a couple of beers that night, but she had felt so free. She had wanted to dance all night. The boys had other ideas about what she could do all night. She could picture the four of them.

            As the boys continued to convince the drunken girl to leave the party with them, Suki’s feeling of unease increased.

            Boom ba boom boom. “Why is it so damn hot!” She felt tense. She wanted to call out to the girl, to tell her to turn-run-hide, anything to get away from those boys.

            Instead, she stared out the window. The humidity was causing her clothing to stick to her body. The music was driving her crazy.

            Suki remembered how the boys had insisted that she leave with them. She had told them over and over how she would rather stay and dance, just as the drunken girl was doing tonight. Suki also remembered how the tallest boy had grabbed her arm so tightly guiding her out of the party and on to the street. He had kept his vice-like grip on her arm while the five of them made their way to a deserted alley a couple of blocks away.

            Suki was stuck between a garage, a dumpster, and the four boys. The boys created a cage around her. She could see between them, yet she could not escape. She knew that she could not get away, and that screaming would prove useless in this neighborhood. She was consumed with such overwhelming fear that she felt nauseous.

            “This is what you wanted, isn’t it? Just like your slut mother,” the boy with the greasy hair said.

            “That’s the great thing about these white trash chicks, they always want it,” the boy with the knife tattooed on his arm said knowingly.

            The boys all laughed as one of them pushed her to the ground. The only boy who had not yet spoken held her arms above her head, pushing them into the asphalt. Suki tried to block out the boys voices as they discussed how much she wanted each of them inside of her, and how hot and wet she would feel. She was alarmed by their excitement, and how comfortable they appeared in this situation. Suki realized that this must have been routine for them.

            She shook violently as one of the boys ripped off her panties and threw them into the street.

            “She’s squirming because she wants me so badly,” he said.

            “Then you better go first,” another boy said with a laugh.

            “We better get busy before somebody comes,” said the boy holding her arms.

Thanks for reading. There will be more tomorrow!

peace and love,
sunee