Happy New Year, 2012!

Dear 2012,

I greet you on your first day with a hope and faith that I don't think I've felt before. This doesn't mean that the sadness, hurt, and anger of all the years past has disappeared... not a chance. But you 2012, for you I feel something of an optimism.

This Lupus flare I've been experiencing lately has not shown any sign of going into remission. In fact, some days it seems to get worse. I was hospitalized more times at the end of 2011 than I had been in the last two years. But that's over now. That was 2011. I leave you in the past. And for 2012, I look into it with hope that this Lupus flare will quiet once more and I can start living again. I have faith that my kidneys will react positively to the medications I am now on and my body will stop swelling every day. I'll go back to my normal weight. I'll be able to resume my daily walks in the park with my dogs. I'll be able to resume my wifely duties. Yes, 2012... you're going to be a good year. I've started talking to the big guy again. You know that after 2008 I had little interest in prayer or God. I was so angry at Him. I chose to ignore him because of the pain I was in and that wasn't totally right. I cheated myself out of healing and I was too angry to see it. But lately I've started praying again. Really praying for myself, for my inner peace, for acceptance, for health. And it feels good. It feels right. I feel at peace when I do. 2012, I guess I've forgiven Him..not that He needs or wants my forgiveness. I'm only human.  But I needed that forgiveness. I needed it so that I could find Him again.

We all need something to believe in. If we don't believe in anything, do we exist? Physically yes, but deep down where it really matters, I think we'd be empty and apathetic and tired and bored with life. We wouldn't be real in our souls. Even atheists believe in something: That God doesn't exist. We all believe. And I believe in God, a higher power, something more powerful than me that gives me peace and I do believe I have stopped hiding from Him.

2012, you are full of possibilities, hope, excitement, opportunities! I look forward to everything you will bring. I embrace you and I embrace the life God has given me. I pray that we get closer to a cure for Lupus. I pray that you will bring great things to my family and all others. I hope that mankind will somehow learn to be less douchey and more kind. I pray that the abandoned animals of the world get to exist in heaven when their time to go comes. They deserve so much love for all the love that they give us, but sometimes people are too selfish to give them that. So I hope that they get to experience eternal love in heaven. I hope to spend more time with family, 2012. No one knows how long they'll be here on Earth. We should stop acting as if we have endless time and do and say all the things we keep putting off.

You're a historic year 2012. In particular because the Mayan calendar of time ends with you. They created a calendar that ran from their time all the way to you. No one knows why. Did they run out of room? Did the calendar maker get tired? Does the end mean that time will end? Our time? Our world? We don't know yet. It's better not to know. We shouldn't live as if we have an expiration date but we cannot live as if we're eternal. You're going to teach us a lot of things 2012. About time, beliefs, ourselves... so let's get started!

Yours,
Liliana

Medication Awareness

NEVER mix all of your meds in one bottle!

As a chronically ill individual I have to take numerous medications on a daily basis. There's medicine for the mornings, the evenings, medication that I take as needed. Pills, pills, and more pills... sometimes it's liquid, and sometimes I have to go to the clinic to receive my medicine through an IV.

For someone who wasn't used to this, when I was struck with Lupus my world turned upside down. My life became all about my disease, my pain, hospitalizations, doctor's appointments, waiting rooms, exams, labs, pharmacies, and medications. Lots of medications. It felt like every medication that could be given to me WAS given to me. I couldn't get out of bed in the morning without taking my medicine and I couldn't go to sleep without my medicine.

I hated that my normal life now had to revolve around medicines. But as much as I hated the new reality, I also knew that I had to find a way to make it work. There is no cure for Lupus but these medications work together to battle it as can best be done. I have to encourage everyone that takes multiple meds to please always be aware of what you are putting into your bodies. When you are on several medications for a chronic illness it's vital to be medication aware. Remember that you are your own best advocate. Years of taking all these medicines have taught me a few things:

1. Review your prescription in the doctor's office. Ask them to clarify any questions you might have about the prescription and ask what the medicine is being prescribed for.
2. Try to use the SAME pharmacy for all of your prescriptions. This ensures that the pharmacist will note if any new meds interact with your regular meds so that no harm can come to you.
3. If possible, drop off your prescription one day and pick it up the next day. Pharmacies deal with so many medicines and patients daily and sitting there waiting for them to churn out your order can make your day feel crappy. It's better to drop it off and return another day.
4. ALWAYS, ALWAYS, ALWAYS CHECK YOUR MEDICINE BEFORE YOU LEAVE THE PHARMACY!! Make sure that what's in the bottle is what the doctor prescribed. Make sure that the medicine bottle has YOUR NAME on it. If there's a mistake, let the Pharmacist know immediately!
5. Consult with the Pharmacist if you have questions about your medicines. This is what they are there for. Use them!
6. Follow the instructions exactly so that the medicine works as it is supposed to. And even if you have been taking the same medication for years, read the directions and warnings that come with the meds. Sometimes information is updated and you'll stay aware of it.
7. FOR PAIN MEDICINES If the prescribed dose no longer works at controlling the pain, tell your doctor as soon as you can so that the dose can be adjusted or a new medicine prescribed. Do NOT increase the dose on your own. This can lead to accidental overdose. 
8. Take your medicines at the same times every day. This ensures that the adequate amount of medicine is always in your body.
9. Report any serious side effects to your doctor and pharmacist. Your doctor may decide to try another medicine instead. And if it's determined you're allergic to a medicine it's very important that your Pharmacist is aware of that. This can save your life!
10. Paying for the medication: Hopefully all patients will have insurance that will cover their medicine but if they do not, try going to the drug maker's website. Sometimes they have programs that can help you pay for the medicine. 
11. If you have trouble remembering to take your meds there are tools and tricks you can use to help you remember: Alarms, Post-it Notes, 7-day Pill Holder, Logging your meds into a notebook with dose and time taken (if you have a smartphone, get this tool as an App!).
12. NEVER mix all of your meds in one bottle. Some people keep a day's worth of pills in their bags/pockets. If you can handle it, more power to you. But if you have trouble remembering things then mixing your medicines into one bottle can be confusing and possibly dangerous.

These are the most obvious rules to follow with medications but if anyone has other suggestions, I hope that they will share them here.
 
*NOTE: DO I REALLY HAVE TO SAY THIS? NEVER SHARE YOUR MEDICATION OR TAKE SOMEONE ELSE'S PRESCRIPTION DRUGS. It's against the law and can have deadly consequences.
 

What am I Waiting For?

When I started writing this blog it was to increase Lupus Awareness and share my experiences as a Lupie with my friends, family, and anyone else that was interested in learning about my battles with the Wolf.

I thought I could spread a little knowledge as well as share my experiences; but one day I stopped writing. I tried to start again but every time I just stared at my computer screen and wondered what the point was. I had no clue if anyone even read these things- my thoughts, or if anyone cared. Yes, you can probably see where I'm going with this. I had myself a months-long pity party. I allowed the depression that I'm going through take hold and just dictate my every move. For months and months I have felt as if my head is in a foggy state. The days passed me by so quickly and I felt like I was always moving, doing something. But I wasn't connecting. My heart wasn't there.

Recently the physical ailments of my Lupus have grown too big to just ignore. The pain has been unbearable and the tears feel like they'll never stop. I'm not just sad anymore. I'm actually suffering at times. But when it lets up... I feel so grateful! I'm so thankful to be able to walk and talk and touch and laugh!! Oh, how I laugh. :D  I can't spend my short time on this earth acting like I don't matter. I'm alive. I'm here right now and there's a reason for it. I matter, whether this blog is read by anyone or not: I MATTER. And I will NOT allow this Wolf to beat me down. Not anymore.

So if you're reading this, just know that I'm back. I'm here. I matter.

The Fear of...

I'm afraid. I'm scared of a lot of things in life- especially death, but lately I'm more afraid for a really special woman in my world. She doesn't like when I speak about her to the online world because she likes her privacy, but she's a big part of my life. I'm bound to mention her every once in a while. I will use a pseudonym for her from now on, but it won't be hard to figure out who she is. I just hope that if anyone reading this knows us and knows her that they do NOT mention anything I may write here. She knows I can't ignore her impact on me and will share some stuff in this blog, but she doesn't want it thrown in her face. I can respect that and I hope others will as well.

I'm afraid for her. She's always been the strongest woman I ever knew. She's small but powerful and to me, she's the most beautiful woman. When I was a child I feared upsetting her because she could YELL so very loud. She could make me cry with just a look. And during my teenage years she was my greatest enemy. Everything I did or said was wrong and everything she did or said was stupid. I couldn't wait to turn 18 and move out of her home but then I turned 18 and moved into my dorm at college and I was so upset! I cried every day and every night because I missed her so much. I noticed that my roommates didn't seem to feel the same loss I was feeling and I even dropped a lot of weight.

After I started showing symptoms of what was later diagnosed as SLE she was obviously very hands on in my care. She sought any material in Spanish that she could get her hands on. If it was about Lupus she had to read it. She paid people to take us to doctor's appointments. I knew she would have carried me if she had to so I could get treated. I got to know her as an individual with the biggest heart through the beginning of my illness. It was a side I had never tried to see before and I am mad at myself for denying that chance to happen much earlier. But now that things were as they were I would just accept and love as she was showing me to do.

I could list every single thing she did for me but I would never finish that list. She still continues to do so much for me- sometimes just by listening to my rants. I'm now at a point in life where the Lupus has calmed down very much. It's not in remission but it's not as aggressive as I have known it to be. Still, the fact of the matter is, I am more able to help her now with the little things she needs to do like laundry, cooking, cleaning, etc. They're not much but when I do them she tells me that it takes a big load off of her. We've also allowed our relationship to become stronger. She's one of my friends. A real friend, besides just being related to me. In recent years she was diagnosed with a chronic illness that has no cure but can be controlled- much like Lupus. She was in denial about it for a long time but finally she began to accept it and take her medications and take care of herself. I thanked God for that because as long as she wasn't accepting it, she wasn't doing what the doctor advised and she was going about as if nothing was wrong. I didn't want her to be sick. She had a tough time for all those years helping me cope with my illness but with her help I came to some understanding with the Wolf. I wanted to do the same for her. I'm not sure what changed her mind, I'm just grateful that it happened.

But this year a new challenge has come to us. Another health crisis and possibly, another illness. I see how tormented she is by the thought of having another disease and I see how the hope inside her sometimes slips away. She is depressed but acting indifferent to this thing. I know how afraid she is because I am afraid with her. I take her to the doctor's appointments and the labs and the pharmacy and I wonder if she felt these things when it was she driving me around from doctor to hospital to pharmacy. I'm doing my best to repay her back for all the love and strength she showed during my diagnosis. Sometimes she tries to push me away. She says I'm already sick and I already have so much to deal with and that the stress of trying to help her cannot be good for me. So what? There's no way I could leave her to do this on her own. Part of me is afraid she'll stop trying to get treated if I just leave her by herself. But I could never leave her to this by herself. I may not be much but I love her with my whole heart and I'll use every last bit of my energy and strength to be with her and help her in any way possible. There is no official diagnosis on this latest thing yet. We return for more tests and surgery later this month and I will be there with her. I'm very scared to lose her. I'll be lost without her. Sometimes I close my eyes and think about a time when none of this was real. We were just family and didn't have such serious cares. But back then we didn't have such a strong relationship. Sadly, it's thanks to all these health challenges that we are in these positions now, so thank you Lupus, Diabetes, and possible mystery illness. You made us stronger in our love. But I still fear all of you and what you could to to her.

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.

Lupus FOG

I walk into the kitchen with the intention of grabbing something and returning to my room. Something? Something...hmmm. I have no clue why I came in here so I sit and wait. I don't even try to remember because that would only frustrate me. It'll come to me, or it won't. Not a big deal most times. I eventually remember what I wanted was a yogurt so I grab it and am on my way. This is Lupus Fog.

The most serious example of Lupus Fog that I have had could have been deadly. I wanted to make lasagna for dinner but I had a support group meeting to get to. I turned on the oven and got sidetracked talking to my mother, I asked my boyfriend a question, then I got into my car and drove away. Three hours later I pulled into my driveway, turned off the car, walked into the house and realized I'd never turned the oven off. The smell of gas was strong. Three hours. I have a houseful of pets and a boyfriend who was on the computer that whole time. They could have died if one little thing had been different. Three hours. I still shake my head in disbelief at that one.

I always had a great memory and that came in handy for school exams. It was as if I had a rolodex in my brain instantly recalling a person's name, address, telephone number, birthday. Now I forget someone's name not 10 minutes after speaking to them. Usually the lupus fog affects me in small goofy ways. I have found letters in the freezer, the remote in the fridge, the phone in the fridge. I tell the same person the same story over and over. Not all of us Lupies get this foggy brain. I have heard that some Lupus patients have their brains affected by the illness with serious complications like seizures and psychosis and mild symptoms like memory problems. I didn't think that I would be one of them but as I have found out, Lupus does not discriminate.

I wonder, is there a medicine that can be taken to treat this symptom? Does it get worse during disease flares and improve during remission? What clears the fog? Does Lupus fog ever disappear? I have so many questions...but once again the fatigue is winning its daily battle of my energy. I have none and I need to rest now.

Vicodin, the Pain Medication.

Pop a few to ease the hurt
wrestling with my mind, hoping this time it works.
When the pain gets this bad I need to medicate
the depression sets in, there is no debate.
Not wanting to start on this roller-coaster to addiction
I pray to God- help me keep my convictions.
Grin and bear it as long as I can
but of the suffering, I am NO fan.
Weighed the choice carefully on both sides of the scale
because I chose to take it does not mean I've failed.
This little white pill can damage as it heals
it can be hard to be mindful of the power it wields.
It's a double-edged sword once it enters the bloodstream
I hope not to get cut as I wait for the dreams.