Where did the time go?

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This was originally written on 9/3/11

My very first niece, Trinity, happened to also be my first experience with a baby/child. I am very anxious to hold babies because I think I may hold their neck incorrectly and they will die. I cringe at watching nurses handle a fragile, little newborn. However, I put on a brave face and agreed to watch her one night for a few hours when she was only months old. I began freaking out when I couldn’t get her to burp like she was supposed to after feeding. I bothered my sister a few times before she finally gave in and said she would come home.

She is now 10 years old and I have no idea where the time has gone. However, she is just like any other 4th grade girl. She is in “love” with Justin Bieber, her favorite show is iCarly, and her favorite colors are pink and purple. I’m by far not the best aunt in the world; I don’t buy them toys every year and I rarely ever babysit. So, I am throwing out all the excuses and taking the time to get to know this little lady.

She is sitting on a stool in the kitchen, pulling apart her string cheese and answering my questions. Her eyes are glued to the tv screen. I ask what her favorite subject in school is and she mentions that it is Science.

I ask, “Why is that?”

“Because it’s fun,” she tells me.

I don’t waste any time to get to the good stuff and decide to ask her if she likes any boys. She is hypnotized by the tv show and mentions that she does like boys. She displays no emotion which makes me wonder if she is actually paying attention to me.

“Is there a certain boy that you like at school?”

A smile creeps along her face that lets me know there is. “Yeah, Zack from class,” she replies bashfully. She briefly mentions that she has not yet told him how she feels and says nothing more.

Through more questioning, I find out that she enjoys being active. Each Saturday morning in the fall she attends bowling. But her favorite sport to play is kickball.

“Would you like to try out any other sport?” I ask. She takes a minute to think and replies gymnastics and/or perhaps soccer. I can visually see her running with a ball to score a goal, and hope she does take up soccer. She has no problem saying what is on her mind and with two other brothers at home, she likes to win.

I recall a few weeks ago when Trinity had gotten all “dolled” up for an event. She looked so cute. And then she pulled out the giant, gold, hoop earrings. My mouth dropped to the floor. It didn’t seem right that she should have interest in those things. She should be more concerned about how long the event was going to take because she wanted to play with her friends. But, I do remember I was the same way at her age. I wanted to be a grown up and make grown up decisions. I told her she needs to enjoy being a kid and not wish she that she were older. She looked at me as though I had just said the silliest thing she ever heard.

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It’s about damn time!

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This was originally written on 3/10/11

Lupus patients can finally rejoice. After 56 long years, there is finally a new medication designed for people with Lupus. On Wednesday, March 9, 2011, the Food and Drug Administration (FDA) approved Benlysta. This costly medication (around $30,000) is an injection that lessens pain and flare-ups caused by Lupus. It looks like the percentage of this actually working for patients is low—a mere 35 percent. Not only that, but it seems to have no effect on African-Americans. It also appears that this new medication is not for patients who have the worst cases which make me ponder this information because in January I was told I would not be able to take Benlysta as I am not “sick enough.” This is contradicting and I plan on asking my rheumatologist for answers at my next appointment in April. Also–how do you measure to see if someone is “sick enough”?

You can read more on the foxnews website

http://www.foxnews.com/health/2011/03/10/approves-new-drug-lupus-56-years/?test=latestnews#

Gall Bladder Surgery

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This was written 4/1/11

After three weeks of headaches and nausea, popping over counter pills that wouldn’t work, and some tests, I decided to have gall bladder surgery. I knew I would survive the surgery but you always have that thought in the back of your mind: What if?

This was my first surgery but not the first time being under anesthesia. The first time seemed like eons ago when I had my wisdom teeth removed. I was nervous as hell. They brought me in the back and started to hook up the IV. It didn’t hurt but the anxiety got to the best of me and I started to cry. The assistant noticed my tear drops on my glasses but thought it was something else.

“Oh your glasses are dirty, let’s go ahead and clean them.”

She took off my glasses from my face and that’s the last thing I remember. Then I could hear but not see anything. It was almost like I was dreaming blackness with a conversation.

I started to hear someone cry. I could hear that person’s breathing becoming faster and faster. I could hear people moving around.

“Jenny, calm down. You are going to start hyperventilating,” I heard someone say. More crying and rapid breathing followed. Then complete silence.

Slowly I begin to wake up from being knocked out and things looked hazy. It takes me a minute to realize where I was and that I didn’t have my glasses on. An assistant came over to ask if I was doing OK. I barely nod a yes.

My mom seat belted me in the car and mentioned, “They said you woke up the wrong way.” Since I was crying and nervous when they put me under, I ended up waking up that way. So they had to knock me back out. So the talking and crying wasn’t a dream. It is a very odd and scary feeling to hear what is happening to you but having no sight and no control of what you are doing. All you can do is to listen what is happening.

As expected, I was nervous for my gall bladder surgery. I showed up for the surgery and everything was going fine. They started with the easy stuff: asked medical questions, wanted me to put on a gown and robe, pee in a cup to make sure I was not pregnant, etc. Then they decided to put in the IV. The whole time the nurse was getting it started, I was pounding my free, opposite fist on the arm chair. You didn’t have to be a rocket scientist to figure out that I was uncomfortable and nervous. The nurse did very well though, she didn’t even tell me to stop. She let me pound away to my heart’s content. Bless my mother for trying to distract me. She told me a story about the crazy neighbor dog that almost bit her. It didn’t work, I still kept pounding away.

The nurse left and the anesthesiologist came over to talk about what he would be doing and had some questions. He noticed my fist pounding but didn’t say anything (I wonder if they take a class for that—to be calm or to not get annoyed when a patient is freaking out). After a couple minutes of asking questions I mentioned that I was put under before and it didn’t go well. I told him that he would have to wake me up slowly. He scribbled the note down on his checklist.

He then stated, “Before I go, I could go ahead and get something to help calm your nerves if you would like.”

“Yes,” I said desperately. I don’t think he was even done talking when I answered. Finally admitting that I was scared as hell I began to cry. I was proud I held it in as long as I did though. For some reason my breaking point is when someone asks if I am okay. As soon as you ask if I’m ok, Hysterical Jenny comes out from hiding.

He assured me that everything would be ok and I nodded to let him know that I understood.

The nurse came in and told me that she would now be giving me something to calm me down. My fist was getting a little tired but I kept pounding away. It was the only thing I could concentrate on to make me forget where I was. Before I knew it, my time to go with the nurse had come. At this point, I was feeling pretty good! I was walking down the hall without a worry in the world.

After a bit of walking we reached the surgery room. Nurses scrambled about trying to get things done at the last minute. They told me I would have to remove my robe before lying down. After that, they advised me to lay down on the gurney. One of the nurses came over to me and picked up my hand.

“Jenny? Jenny, do you remember me from school? I’m Chelsea. I’m Chelsea Carpenter.”

I believe the next words out of my mouth were something along the lines of, “Oh you’re so good. You’re a good nurse.” Obviously, some of the other medications were kicking in at this point! Then everything was black.

Next thing I know, I was beginning to gradually wake up. I don’t recall hearing someone being hysterical so I felt some relief. They actually listened to me! Little by little I was beginning to keep my eyes open to see what was around me.

The staff was wonderful. And I’m not saying that because I work there part-time. I genuinely felt like I mattered, that they cared about me. I don’t know why I was expecting anything less.

I am left with a thought though. What did they give me for my anxiety and where can I buy some!?!

Vibe

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This was originally written March 22, 2011

I have only found a few vitamins where I can actually feel a difference when I take them. One of them is glucosamine & chondroitin. Another is a series of vitamins/minerals from a company called Eniva. I was surprised I never knew the company existed considering it is in the state right next to us, Minnesota. I first learned about it from Britney, my friend in Minnesota that has Lupus. Britney was in the hospital when her family came upon the company and products. Britney and her mom started to tell me about this amazing vitamin they found. They seemed extremely excited about it. Almost a little too excited about it. I thought to myself, ‘Why are they so excited about this?’ Then they had me start it and I realized what they discovered.

I am learning so much about vitamins and minerals through Eniva, and how important it is to have these every day.

Their main product is called Vibe. It’s a smorgasbord of minerals and vitamins in one little dose. It is a liquid nutraceutical. According to Wikipedia, a nutraceutical is “a term combining the words “nutrition” and “pharmaceutical”, is a food or food product that provides health and medical benefits, including the prevention and treatment of disease.” (http://en.wikipedia.org/wiki/Nutraceutical) And being liquid is the most critical component. Why you ask? Because our bodies are able to absorb 100% of liquids. Eniva has mixed science with the vitamins/minerals so not only does it get into your bloodstream but each CELL itself. This is not a “quick fix” and does a couple weeks before you feel any effects.

Since Vibe is not sold in stores, the only way to order it is through an associate, such as myself. With shipping and handling one month supply costs around $60.00 (depending where you live). You may think to yourself that it seems a bit much to pay for vitamins but the rewards are completely worth it.

What has it done for me so far? It has given me energy, I am sleeping better (I have insomnia) and it even helps me with my sinuses/allergies. Since I’ve started taking Vibe, I have not had the sinus misery that I usually get. No headaches, sinus pressure and no sinus infections. Occasionally I may feel some sinus pressure so I will take one Sudafed and then I’m good for days, weeks… Of course everybody is different so it may work in other aspects for someone else.

Here is the site if you are interested and let me know if you would like to place an order:

www.eniva.com

Even if you decide not to try Vibe, please take any vitamins or minerals—they are so important for our bodies!

Another Fun Filled Lupus Day

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This was originally written on 7/24/11

Yesterday was another day of battling my Lupus flare. It was somewhat manageable in the morning as I helped clean my sister’s place. I was doing ok but not after too long, the fatigue and pain had let me know they were here to stay for the day. Soon, each individual step was hard to take. I plopped down on the couch and let my head fall back. I have completely no energy. Even the easiest task of keeping my head up was exhausting. I mentally debated if I should go to my friend’s wedding reception that night. This would be my third wedding missed in a row due to my Lupus.

I wish for a cloudy, stormy day. This heat and sun only make me feel worse. Which is ironic because it is usually opposite for everyone else.

Storm looks at me with her big, brown, puppy-dog eyes, asking if I will play just one more time. But she already knows the answer. I get on the floor to lay down, curling up next to her and try to take a nap. It’s funny how as child, that is the last thing you want to do but once you’re an adult, you want to take them all the time. Well, it’s that way for me anyway. The nap is a failure and I become agitated.

I called my mom to vent and began to cry (while making a mental note to see my therapist next week). I cant decide if I should put myself through the extra pain and exhaustion for the reception. I feel guilty and feel like a bad friend.

“I’m sure they understand,” she stated. Which made me think, ‘But do they really?’

She helps me see past some of the denial and I now see (and know) that I should stay home and take care of myself.

I start wondering what I will have for supper. The only thing I am craving is a turkey sub from Mr. Goodcents but I have no idea how I will get one. My small meal isn’t worth having them deliver it to me. I start to ponder if I could ask Mel to go or if she would even go for me. I throw that idea out the window and begin to start talking to myself, pointing out that the trip would only take a couple of minutes.

Motivating myself does not work which means cooking something is clear out of the picture. I realize I need to figure something out since I never had any lunch. So, I open a can of fruit cocktail and wait for tomorrow to enjoy a meal.

I haven’t lost all hope that I have to miss the reception and try to nap a second time. And I finally fell asleep! I still have my symptoms but they seem to be giving me a break. Erik comes to pick me up and we go to the reception, or so I thought.

We arrive at the Japanese Gardens and listen to its’ silence. We expected to hear music, people talking, and laughter so we figure it must be further into the garden. We walked all around and didn’t find anyone. I texted the groom where the reception was but didn’t think he would reply. But I tried just incase. Erik brings me back to my temporary home, at my sister’s, and we spend the rest of the night listening to Erik tell high school stories.

When getting ready for bed after Erik left, I noticed a text from the groom. By this time I knew there was no possible way to make it while trying to stay awake and driving at the same time (sorry Shane!!).

I have to learn to stop trying to please everyone and take care of myself first. I need to realize on my bad days, not to keep pushing myself and stop being such an overachiever.

Sometimes in the back of my head I wonder if I have “fully” accepted my Lupus, or just think I have…