Time Off

I've taken an extended break from my blog. I stop by and look at it every once in a while and I sigh. I feel like a failure. I started this blog to spread lupus awareness, to show people what one person's life with lupus is like, and because when I see my thoughts written down it helps me to make decisions in my life. But somewhere between writing drafts and publishing the posts, real life started to get in the way. I started having increasing health issues. Perfect thing to write about! But I had so little energy that just looking at my laptop made me want to lie down. When I finally recovered enough to get back to the blog, it was time for my surgery. I had to have my Right hip totally replaced due to years worth of Prednisone use in my battle against Lupus, which caused Avascular Necrosis in both hips. The right one was worse off so it was the first to go off. Ha. Joke. Yet another very important topic I should have written about. But the experience was so terrible I just wanted to block it from my brain. And more time passed. The holidays came and went. The LFA's annual Walk for Lupus Now happened and last year was especially great because all of my friends that I usually wear my "normal" mask in front of actually formed a team to support me in the walk. Such a kind and generous act by a group of people that I love and that I know love me, but that I try so hard to keep from my Lupus world. Why do I do that? I should have written of that. I moved in the past year and will have to move again very soon this year. That's hard on anyone but on someone with a chronic auto-immune disease? I had several attacks of what I can only describe as level 9 pain from what I suspect is Fibromyalgia. My panic attacks increased in occurrence. I constantly feel as if I will faint. All these things are going on and I just sit here. I want others in my shoes to know what I went through so that they have an idea of what can happen and what to do. I'm no therapist or life coach. I'm certainly no one's role model. I'm just me trying to figure out my life against Lupus. Maybe by sharing that I can help someone else out there in their battle too. I took some time off. But I'm ready to come back and tell my story. If anyone is out there listening, I hope whatever battle you are facing that you are able to dig deep inside and do it. And I hope that your battles don't stop you from living your life as you want to live it. Unfortunately I allowed my fight to take over and I gave in for a very long time.

I'm tired of not being the one in control. And right now I'm facing what may turn out to be a Defcon 3 Lupus flare. My kidneys may require Chemo yet again. I'm always tired. I'm always sad. My immune system is weaker than it usually is (Pretty weak already!). My Prednisone dose has been raised by more than 4 times the dose I was at. I'm stressed beyond all imagination! Our housing situation has gotten dramatic with TROs, court, screaming at people. The man I'm in love with and have been with for almost a decade has decided we may be better off apart...

I don't know what will happen but I know it will hurt. Yet this time I refuse to hide in my cave. I'll drown in that sadness if I do that.

Another Hospitalization

The pain was unbearable. I could not sleep the other night (25th) because of how bad it hurt. I passed out for 2-3 hours but woke up at 5 AM with tears in my eyes. I went to sit in the kitchen while Mom was getting ready for work. When something hurts that bad, it's like I go into a panic. I'm not sure what to do, where to go, or even how to move. This always upsets my mother, who after watching me silently for a few minutes sighed and told me I need to go to the ER. This made me cry even harder but I knew she was right. It's been one week since I last went to the ER. I dread this but there is no choice. Damn. I quickly pulled on some warm pants and a sweater (the ER gets very cold) and she woke my dad so he could drive me there. I make him leave me though because I hate the idea of him just sitting in the waiting room. We thought I'd be out in a few hours and he'd pick me up when I was done. Little did we know....

I prefer to visit the ER after the shift change. There's a lot less confusion and people can answer your questions with less attitude. I'm serious. I arrived just an hour before the next one at 7:30 AM but luckily there appeared to be a small amount of patients waiting there before me- maybe 30. Even so, I wasn't called to the actual ER until four hours after I arrived. All the while I was in pain and the Tylenol the nurse gave me might as well be mints. Even in the back room, I was left waiting in the halls or in a small room until an actual doctor could see me. When she does, she informs me that I have a serious infection that requires IV antibiotics. Okay. I was thinking a few hours with a pole hooked to my arm. No. They wanted to admit me. *sigh* I really wanted to attend the UCLA Patient Conference on Saturday the 26th but...I could have refused to be admitted, but then the infection would have gotten worse and I would have ended up right back in the ER. The doctor pleaded with me, "Let us admit you and the medicine will kill the infection and you won't have to come back." I knew she was right but I still felt hopeless. The weight of constantly being sick and constantly being rushed to the ER threatened to explode in a rush of tears. And it delivered on that threat. They seemed to be startled by my sudden rush of emotions. They asked if they could help. Of course not. Unless they have a secret cure for Lupus. The doctors tried to talk to me but I was not in the mood for the kind doctor who really understands me and my illness. They don't get it. They can't. And I can't stop crying. And my foot hurts. The pain pills are not relieving any pain. I asked for better pain meds- NOT Tylenol- and I was given Morphine. That was okay.

I wondered if the fact that I was alone in the ER was why I was so sad. Usually I have a parent or my guy by my side. When Daddy finally calls to ask if I'm ready to go he was surprised to hear I was admitted. He brought me a light lunch and went home. I didn't want any company. Closing my eyes and crying the hours away seemed to be a better idea. My guy and I weren't on the best of terms so I hesitated on calling him but I figure I'd want to know if he was admitted to the hospital. He reacted just as I knew he would, like it bothered him. But he promised to stop in and see me after work. That didn't make me feel better. I waited and waited for an open bed upstairs and he finally showed up. He waited with me. He held my hand when the Morphine wore off and watched me cry in agony until a concerned nurse got the doctor's okay and gave me another shot. I just wanted to lie down. Time passed faster at that point and twelve hours after I arrived, my bed (with a window) was ready. Thank God. After all the intake questions were done, finally, I am permitted to rest. Seeing my guy has made this process a little easier but I was still so blue. That was day one, a Friday.

Weekends as an inpatient can be lazy and slow or interesting. Sometimes I have roommates that I never see behind their blue curtains but this time I was in a room with three other women either pre or post op. They are talkers and they attempted to draw me in but I had to decline. I'm not much of a talker when I'm sad. I just enjoyed listening to them and the stories they were telling each other. I spend most of the weekend with my mom. She visits me always and tries to cheer me up by bringing me magazines, books, a juice or two. Finally it is Monday and I am dying to find out when i can go. I hear maybe today. I hear probably by Thursday. I hear frustration in my voice as I ask who is correct. I hate this. I hate that I injured my damn foot. I hate that on a normal person they would have just gotten a bruise and a tender spot and went about their day. I hate that my kidneys are not working normally and that is why my feet were swollen in the first place. I hate that I must take Prednisone daily and this makes my skin thin so it's easier to injure myself. I hate that gaping hole I saw when i looked down. I hate that the stitches the first ER doc gave me didn't hold. They would have held but my feet swelled up again and made them burst off creating a hole again. I hate that I will always have a giant ugly scar on my foot to remind me how fragile my body really is. And I hate that I have to hate from a hospital bed where there is no privacy and no quiet, no cats, no dogs, no family, no boyfriend. All this hate can't be good.

When a fresh faced blonde doctor arrives and tells me my labs look great and that I'd be home by dinner today I want to laugh. I thank her profusely. She said they got to the infection before it wreaked havoc on my body. Wonderful! I'm not being sarcastic, I really mean that it is wonderful news. I have had quite the opposite experience before where the infection got so bad that it turned septic.

So that was my three days in the latest installment of my list of hospitalizations. I called my guy with the great news and he comes to keep me company as we wait for the discharge meds, instructions, appointments, etc. We even make it home by 7PM and it feels so good to be here. This hospitalization did not turn out to be as bad as I had feared and that is a small miracle in these tired eyes. I had put off coming to the ER because of what happened the last time (Date Night!- The waiting game in the ER). At least this time I was seen, treated, and I hope it does not happen again.

Date Night!- the waiting game in the ER

When my boyfriend said,"Let's go out tonight" I'm sure he wasn't thinking let's go out...to the ER. But that is exactly what happened this friday night. Ever since I injured my left foot and was left with a big hole on top of it, I've had to worry about it getting infected. I think it is.

I asked him to drive me to the ER and it being a Friday night, I knew we were in for a long wait. I originally injured it in August. The 14th to be exact. And it still has not healed. This is due to the fact that my feet keep swelling because my kidneys aren't functioning at 100%. So after the first ER visit when I got stitches, it was healing. Then my feet swelled and BAM! the wound reopened. And I was left with a giant hole in my foot. It won't heal also because I'm on Prednisone and that keeps it from healing normally. This sucks so bad. I can't wear normal shoes. But today I thought I should have it looked at. So I asked to be taken there for our date. He obliged but was not happy about it and let me know it every time he sighed so very loudly. I don't enjoy spending time in the ER either but I think that he thinks I do. I checked in and waited to be called. The nurse took my vitals and then I waited again, and waited, and waited. Apparently there were several gun shot victims in the trauma room. Okay, I can understand that that would be more important than my foot being infected but I was determined to stay and be seen by a doctor because as we all know, INFECTIONS KILL LUPUS PATIENTS. Not all of the time, but they do kill. They can kill. So I take these VERY seriously.

I sent my boyfriend to his car to nap because he kept nodding off next to me. Oh yeah, I was in pain by the way. All they offer is Tylenol until a doctor sees you. The pain was tolerable so I just popped a couple of Tramadol and continued waiting. My guy woke up and brought me some food to keep my energy up as I waited and waited. We'd arrived at 7 pm. It was now about midnight. I could have sent him home but I didn't want to be alone. So we waited and waited. Again he went to his car to nap and I stayed in the ER, waiting. I started nodding off and I actually napped right there in my wheelchair. I was exhausted. At 7 am, my guy went and got us breakfast. Okay. I'm beyond tired. I'm grouchy, cranky, moody, sleepy. And all that has been done for me is I was given Tylenol. As we chatted about what a great date we were having we realized it was past noon of Saturday. That's it. The only way that my feet would stop swelling up is if I kept them elevated...and here I was sitting in the wheelchair for 18 hours! My feet were so swollen I couldn't lay them flat on the ground. I could wait no more.

When I went to speak to the nurse about it I'm sure she thought I was being difficult and didn't want to wait my turn. BS. Waiting all that time was being detrimental to my health. Finally I said,"That is enough, we are going home." I could almost see my boyfriend jump for joy, for although he is as concerned about my health as I am, WAITING for 18 hours to never even having been seen by an MD is just ridiculous. So my foot is probably infected and I may have to return to the ER...but I can't wait anymore. I need to sleep. I need to elevate my feet. I need quiet and a massage on my lower back. What a date. Next time, I'll let him choose our destination.