It's in the Hair

Pre lupus days I had beautiful jet black shiny long hair that went all the way to my elbows. It was full and thick and always looked like it belonged in a shampoo commercial especially when it was blowing in the wind. Everyone always complimented my hair and I went through great lengths to protect it. My mom would even comment on how I need to treasure my hair because it was one of my strong physical attributes. After being diagnosed with Lupus and going on chemo and taking numerous medications, my beautiful long hair started to fall out. Now I shouldnt be so dramatic since it I never has to shave it bald or anything, but it would shed to the point where I would have all these bald spots. It always grows back and I would always try to grow it out again. After this lupus flare, I felt like I was home free when I didn't notice any hair shedding. But alas, I spoke too soon. My hair is starting to fall out yet again and tomorrow is the day I have to chop it off again. I guess this is my insecurity speaking but I feel like I'm losing my beauty and everything ladylike about me. Without long hair I don't think anyone will find me desirable. It sounds pathetic to place such importance on my hair but it's just how I feel.

Diagnosed Again

So...I am trying to digest the fact that I'm basically a walking combination of sickness. Not only am I one of the few and rare people that has been lucky enough to be diagnosed with both types of Lupus, I've got a shitload of other illnesses to add to the list. A year after I got diagnosed with Lupus, I was diagnosed with High Blood Pressure and started batteling kidney issues. I thought that was the end of it. But last Friday, my doctor has presented me with a few more illnesses that I possess. There are issues with my thyroid, I am anemic, and I have high cholesterol. I am also borderline diabetic, and there's a chance my asthma symptoms have been triggered. Currently, I take 11 pills. Some twice a day, some three times a day. I so do not feel like I am 23 years old. I feel like I'm 80 or something. My doctor has also informed me that currently, my white blood cells are low, so I am vulnerable to bacteria and viruses right now. That saying "when it rains, it pours" is currently reapeating in my head. I really have no choice but to tackle all these illnesses head on and stay positive. But the task seems a bit daunting. I so can't wait until everything is under control and I can live my everyday "normal" life again.

At a Stand Still

I think the worst thing about my life is that from time to time, it has to be put on hold. I'm ordered to rest and relax and destress, but it does get lonely sometimes. I feel bad for my mom because I know it hurts her to have to see me take a time out from life. But it's not realistic to expect life to take a pause with me. Life keeps going. People keep going, and have no choice but to leave you behind. My friends have school, fam, work, relationships to deal with, and they are all young. Their life should be about parties and blowing off steam when they're not busy, not babysitting the sick girl. I just wish with all my heart I didn't have to take a time out. I wish I could be young and having fun too. I wish my time outs in life would be less frequent. I know it's hard to be friends with me because from time to time I have to take a break. It's depressing and people don't wanna have to deal with or have no time to deal with it. I hope I won't grow old alone though. I hope there is a man out there strong enough to handle my breaks from life. If I'm lucky, maybe one strong friend would be nice too.

I'm Still Alive

Well...it's been a while bloggers, but I'm back. I was just released from the hospital a couple days ago from what had to be one of the closest moments to death I have ever had. My last blog had me complaining about my fatigue and struggles with lupus, and maybe I was being punished for being ungrateful for everything else I had going on in my life that God decided to punish me. That ear infection spread to my neck and face and blood. At 4am on Sunday, I woke up and realized my whole left side of my jaw and face completely swollen. By 8 am, my entire face had swollen ten times bigger to the point where I couldn't close my mouth, and I couldn't talk anymore. I was rushed to the ER and I knew it was really bad when the attendant looked up, saw me, BARELY took my info down and rushed me into a bed where they quickly stripped off my clothes, placed me in a gown and started going over my vitals and drawing blood. Things from there are kind of blurry. I remember them taking me to get a ct scan and me shivering so the nice man wrapped me in a heated blanket. Then I remember the doctor telling my mom they needed to sedate me so they can put a breathing tube in me in case the swelling would block my airways. I remember my mom crying because whenever I am in the hospital, she never cries and encourages me to stay strong. I remember telling the nurse to make sure my mom knew her way home because she's bad at directions, and the last thing I remember in the ICU was them telling me to just breathe.

I remember a lil bit from when I was sedated, I was biting my tongue, but no matter how hard I tried, I couldnt open my mouth to release my tongue and it was really painful. But I heard someone instruct someone else to put a bite guard in my mouth. And I also remember them putting in my catheter (sp?). The next time I came to, I was in the ICU and I remember looking for my mom. And the nurse said I already had 3 visitors and my mom would be back at 5. I then woke up to a priest standing over me, and I thought I had died and that was heaven (later on, I found out my mom asked for a priest to pray for me and then really hoping I wouldnt wake up while he was there so I wouldnt get scared.) A couple minutes later, I woke up again, and thought the nurse was the priest and I asked by writing on a piece of paper if he was a priest. I thought it was cool that he was doing double duty as priest and nurse.

I had some trippy dreams while being sedated. I remember of dreaming of being in a meadow and feeling peaceful and feeling the warmth of the sun. I also dreaming of a doorway with light shining through but not going anywhere near it because I had heard of that saying if you go into the light that means you die. I also dreamed of many many faces. It was like flashes of photos of people just flipped through like an album. It was creepy in the sense that I have a feeling those faces were of people who may have passed away in that room I was in, but I was comforted by those faces too...like they were helping me.

I finally was able to come fully to on Tuesday the 18th. I woke up to a swollen body and a very uncomfortable breathing tube. And a week later on the 25th, I was FINALLY released from the hospital. Im currently recuperating at home. I'm weak and swollen and cant move very well but I'm fighting through it. Hopefully it will be a quick recovery and I can be back to normal soon. = )

Why Me?

This has been a rough few days for me. Lately my joints have been tightening up, feet/legs have formed rashes/bruises and have started to swell, I'm conjested, and I've been coughing a lot. I figured it's probably because of the flare I had in Florida. But last night and today have been spent in unimaginable pain. I worked last night and could barely walk. This morning, there was fluid in my ear, my legs and feet were 3 times swollen, it hurt to move, and my chest felt like there was 50 lbs of ice sitting on it. I am so sick and tired of this Lupus bullshit. Doctors say the change of environment in FL probably triggered the flare, but c'mon on now! What the hell am I supposed to do? Never go out of Sacramento? Yesterday I broke down at work. I went outside in the cold, and just let out a good cry. I am in so much pain, and there is nothing I can do about it but grit my teeth and keep charging forward. My mom says God only dishes out things to people he knows can handle it. If that's true, I'm glad God thinks I'm tough enough to withstand the pain, but I really can't do it anymore. I hate when I do this, because the answer never comes out clearly, but I am asking "Why me?" What the hell did I do to deserve this? Was I that horrible of a person? Haven't I learned my lesson already? I've already made changes to try and be a better person. I try very hard to not use lupus as an excuse to get out of things. I dont take advantage of my disability. I try to be nice to everyone around me. I've stopped sleeping around. I eat better and take care of myself and mother. WHAT MORE DO YOU WANT FROM ME GOD?!?!?!?!?!?! I can't do this anymore. I'm so exhausted and I want to give up. I want a break from this physical pain. I don't know what else to do anymore. God, please end this pain...I'm not strong enough to handle what you're dishing out. I'm so tired, please just leave me alone God.