Journaling, Lupus

Another Flare

lupusbutterflyLupus has a way of masking itself as other ailments. In the past, I’ve had to go to opthamologists because I briefly lost sight in my eyes. They said it was swelling, gave me some medicine and told me to come back in a few days. When I lost hearing in both my ears, the audiologist said it was swelling in my ears, gave me some medicine and told me to come back in a few days. Once, my heart felt as if it was going to explode. It felt like it was too big for my chest (only way to define the pain). The emergency room physician said the tests determined that my heart was fine, the EKG didn’t show anything but gave me some Dilaudid and sent me home. It was if I’d made it up in my head, but I didn’t. So, now I just don’t go to the doctor whenever something happens. I figure it’s probably Lupus.

A couple of days ago, I started to get some swelling in my left foot. I took a couple of Extra Strength Tylenol. I figured it would just go away. It didn’t. As a matter of fact, the pain began to travel up my left side and rested in my lower pelvic area. That’s when the pain sat me down. Yesterday, I woke up and the pain was in the left side of my chest, near my heart (again). I never assume it’s a heart attack anymore, but always assume it’s Lupus.

I get tired of doctors watching me having total body spasms or pains that are out of reach inside my body and them saying that they don’t understand why it’s happening and would rather just give me prescriptions for pain, and inflammation and also muscle relaxers just to get me out of their faces. I get it. This is why I don’t go whenever I feel bad. I just take my medicines and rest. There’s really nothing else they can do. There’s no cure.

The only drawback to taking those meds is that they are so strong, I am unable to take care of myself or anyone else. I can’t do any work because it’s hard to string two thoughts together. I don’t like the high. I don’t get how people want to feel like that. It feels like an out of body experience – like things are happening around you and you can’t do anything about it.

Well, I’m writing this blog as I am coming out of the high from this last round of drugs. Some of the pain is still there, but I can function better now. I’m still a little dizzy, able to write, but not much else. I won’t push it.

Lupus sucks. Please pray for a cure.


Push Through

Some have asked me how Lupus has affected my life. The following is just a typical day in my life.

When I wake up in the morning, I’m already exhausted.  My mouth and eyes are bone dry, but I make sure to thank God for my life.  As I walk to the bathroom to clean my face, every joint and muscle ache but I push through. For the last two weeks, as part of my daily routine, I’ve had to deal with nose ulcers – sorry if that sounds disgusting to you, but imagine if it were actually happening to you. I just swab the vaseline in there and push through.

Next, I put on clothes -preferably those that don’t bind because occasionally, my skin gets irritated for no reason at all other than – lupus. So, I generally opt for comfortable sweats and/or flannels. I wear Ugg boots most days around the house because my feet are always freezing cold and can’t stand anything rubbing the tops of my toes, like leather from shoes or cotton socks. I pull my hair into a bun because not only is it easier, but I’m losing my hair and it hides my hair loss.  I can’t wear eye makeup because my eyes are sensitive (currently having vision issues in my left eye).  It’s hard to keep my nails done, because lupus affects my nails and makes them break and crack.  I do my best.

I think about what I’m having for breakfast: will I have just a cup of coffee or will I actually eat something that will help all these vitamins and supplements go down but requires me to cook? I usually opt for a cup of coffee and a boiled egg after drinking two bottles of water.  I currently take Vitamin B-12, C, a prescribed dose of Vitamin D (because I’m usually deficient), Biotin, Zinc, Magnesium, etc.

I make breakfast for my daughter and get her ready for her day, which would take a lot of energy from a person without Lupus, so for me – I’m super tired afterwards. She has pre-school, dance and swimming throughout the week for which I am responsible for getting her there, ready and on time.

I determine which of my house duties I will perform based on my energy level after breakfast. If my energy is high, I can usually do a couple loads of laundry, make up my bed, clean the kitchen, the dining room, and family room.  If I don’t have the energy, I usually skip the laundry.  My husband deserves a clean house when he gets home.

If I’m still on my caffeine high, I will go to the grocery store and get a few things for dinner, so my family has fresh ingredients for dinner. If not, I find something in the cabinet and make it work.

I make all the doctor/dentist appointments, handle all the home issues, etc.  I cook dinner, wash the dishes, take care of my kids’ needs, then get my daughter ready for her bath and bed. I fit in my jewelry business when I have some down time. I prepare myself for bed, read my scriptures, take my medications and go to sleep. I usually get 3-4 hours uninterrupted sleep due to pain or just time for my husband.

It’s not in my head.  I hurt ALL day. I hurt in places that don’t even make sense to hurt. It’s not something that is caused by or can be cured by changing my diet. I don’t want to hear what may be helping your friend/co-worker/cousin – they may not have the same type of Lupus or the same Lupus symptoms.  I don’t want you to feel sorry for me.  I don’t want the focus on me. I just want you to understand why I may not be able to hang out, call you back, or why I’m “always tired.”  I want you to understand that my tired is different from your tired. Please understand why I’m not always dressed up and made up.

Most importantly, please understand that while as a Christian, I don’t “claim this,” but I do have it.  I also have faith.  There were lepers in the bible who were healed because of their faith (Luke 17:11-19) and there was a woman with an issue of blood for twelve years (Luke 8:43) who was healed because of her faith.  Jesus made the blind see, He made the cripple walk again and He raised the dead. They all had something, but were healed. I know Lupus isn’t my destiny. By His stripes, I am healed.

I KNOW that my symptoms could be a lot worse, but GOD…  You may think I’m giving up – I haven’t.  I’m waiting on the Lord, while giving Him the glory for everything I’m NOT going through.  I push through EVERY day, even on those really bad days.  My God is an awesome God. So, yeah I have Lupus but it does not have me.