LUPUS: Day 34, No Medication

Today is day 34 with no meds and the first time I've seen my doctors. Lupus is once again giving issue to some organs. Docs did their blood work and gave an analysis, osteoarthritis has spread, doctor believes I'm now in osteoporosis stage with bone density. Will know more after blood panel comes back. Neurological disorder appears to be Fibromyalgia but still no meds until I see Neurology at UCLA next month. Back on low dose neurontin and cymbolta to start. My neurologist looked at me like I had three eyes when he found out I was still working, much less full  time. Neuropathic pain has increased due to the Fibro. BP is out of wack due to the Lupus, 162/126 isn't a good thing. Ordered to rest and relax. Hard for me.

Lesson: Do not take your ability or health for granted. We all have our issues and our things to face. No one person can say theirs is worse than the next person, as we can never truly understand what the others pain is. Life is a treasure and those we choose to share it with even more. No one said it would be easy, but what we've achieved has been done by drive and perseverance. Breathe. Listen to it, feel it, control it. A moment to yourself to reflect on how things are affecting you give us the opportunity to adjust things where they need adjusting. Nothing is easy but everything we want to achieve is worth having if done in good faith. HUG...a 20-30 second hug releases endorphin's in our system that have a remarkable affect on our well-being and help reduce our levels of stress and anxiety. As hard as I have become, I am once again learning to drop the walls and allow good energy and well wishes, through affection or otherwise, to have the positive affect on me that they should. Mentally and otherwise. Talk, express, LAUGH...even when you feel you don't have reason. Laugh at your position and adversity and see how the heart and mind become airy and willing to partake in something not so heavy. It changes you. Don't give up. Even with limitations we all have something to share and add. Love and Light create our "yellow brick road".

LUPUS: Day 31, No Medication

Day 31 with no medication. I feel like it would be easier to die. There’s not a single joint or muscle in my body that doesn't hurt. I don’t mean discomfort…I mean pain. Holding my cane, grabbing a pen, trying to stand or walk, they all kill. Joint pain in places I had no idea there were joints. My knees are shot. My mind us mush. I try to eat and I get sick. I walk around with blood shot eyes due to the dry heaves and force behind the retching. I’m exhausted of it all. Tired of the pain, tired of the wait, tired of hearing I look well…I’m freaking tired. I've asked for pain medication to at least help me through this part of it and nothing. Chest pain. Who cares? Chest tightness. Who cares? Elevated diastolic pressure. Who the f cares?

I try to keep my head high and keep a positive disposition about it all but managing all of this is exhausting. I literally play mind games with myself just to try and accomplish things that need to be done. Nothing helps. I feel for my co-workers. I know in my heart of hearts that there is something I am supposed to be learning and perhaps teaching through all of this. I pray and meditate for something to keep me upbeat and in good form but it seems I am needing to search for clues as to the direction I am to go. As of now…it’s down. 

LUPUS: 30 Days No Medication

Not quite sure what happened. I had a couple of days where I was feeling better, Thursday I managed to make it to the gym for a simple and light workout, by Friday morning my mobility started to deplete again. As the weekend has gone on the joint pain and inflammation has increased and even typing is painful. I managed to make it to church today and have been in bed since I got home. I've been in and out of sleep with an overall sense of malaise. I only wish I had a better understanding as to these feelings and flare-ups. When every movement, even of the eyes, is painful...you begin to question everything.

LUPUS: Day 26, No Medication.

LUPUS: Day 26, No Medication. This is still proving to be an interesting ride. While some things have seemed to calm down a little, others have not, and some have popped up that were quiet. I've been pushing myself to walk without a cane and although painful, I've managed to get my wobbly ass around for the last two days. A little slower, especially at the start, but I’m movin J. The muscle and joint weakness still persist along with pain but I can tell my mind has worked out ways around it so that I’m not so focused on it. Of course the neuropathy in my hands and feet continue but I've been listening a lot more to my body so that has helped. My appetite is still pretty poor but I've been trying to remind myself to eat a little something even when I don’t feel hungry, especially since I've been told I look like I’m losing weight. I’m sure the vomiting that often accompanies my Lupus has more to do with that. My least favorite thing is to throw up. LEAST.

I’m excited to see the doctor next week. I’m so curious to see what has come up, gone away, gotten better, or still wants to challenge me. I’m curious to know what direction my meds are going and I’m curious to find out how my organs are doing and to see how much my bone density has dropped. I see UCLA Neurology in July as well so these next few weeks will be a big deal for me. It kind of feels like I've been invited to this big party and as the honored guest I am waiting for the much anticipated reveal. Sick, right?

LUPUS: Day 21, no medication

Day 21, no medication. For days now I felt like things were leveling out and then two days ago they started to rear their ugly heads. Loopy Lou (my pet name for Lupus) has decimated my appetite. I’ll eat once a day because I force myself, twice if I’m lucky. I’m exhausted but can’t sleep. Joint pain all over my body. Headaches. Neurologically I’m still having muscle weakness and pain. Sharp shooting pain with no warning. Burning or tingling sensations in my feet and hands. Sensation of being lightly brushed by fingers across the tops of my feet. Tremors, blurred vision, choking. All when I thought we leveled out. In their true nature…they did a sneak attack. Like when you turn your back on the ocean…

Needless to say, I’ve developed more coping skills over the past three weeks but some of that may be a sort of “immunity” to the difficulties. Lol. I can tell you this, DO NOT EVER UNDERESTIMATE your brain. Talk about being made painfully aware of how much it does and controls. Jeez. If you have deal with any type of health or physical limitations…laugh. Laugh a lot. It does so much for me. Don’t get me wrong, it’s not always easy to crack a smile between the pains, but if you can you will see its worth. Hell, I even laugh at the pain sometimes, for I can’t help myself. Damn shooting pains catch me so off guard that I need to laugh in order to  mask the crazy shouts that come from my mouth with no warning. Lol. One of the new frustrations: Doc is prescribing a wheelchair to have for the times when the neuropathy is preventing me from being mobile on my own. I finally wrap my head around the idea of it and I call to make an appointment to be fitted for it and so far 6 dealers in my area will sell me a chair but do not do any type of measurements. Can I get a break here. SHIAT!

Have a blessed weekend. MUAH

Lupus: Day 17 No Medication

I said I got this...and I stand by my convictions but WHAT A RIDE it has been. Seventeen days with no medication and does my body feel it. Wow. Increased joint and muscle pain, continued weight loss, neurological symptoms, and fatigue are all prevalent. Two more weeks with no medication and my doctors will run more tests to see where my illnesses have grown or increased. 

Due to the current condition and the most recent acknowledgement of the added illness I have decided it's time to put my motorcycle on the market. Despite the disappointment of realizing I need to sell my bike, I know it's the best and safest choice for me. On that note, doc wants to order me a wheelchair for the bad days when the neuropathy and joint pain become to painful and make it unsafe to walk. Not worth risking a fall and breaking a bone due to osteopenia, plus the mobility aid will help me maintain a semi-normal existence...so, I started shopping AND...I found out I can get an orange one...like my bike. Wheels are wheels. Ha ha. 

LUPUS: Day 14 No Medication

Day 14 and it’s a slippery slope folks. No medications and INCREASED pain with limited mobility. Been using a cane again for a week. My legs feel like they are twice the weight they are, the neuropathy in my hands and feet is no joke. Even the simple act of standing feels like I’m standing on a bed of nails. Hands are weak and ALL my joints hurt from my neck down to my toes. I don’t even have to move and there’s pain. WTF?!?!? Lol. Gym? Ha ha…what’s that? I want to go…but I can hardly walk from my desk to the back door so I doubt the gym is feasible.

Put the motorcycle up for sale today. It’s now unsafe for me to ride so I may as well let someone else have the joy of owning it. Wish it were different. Right now it’s all about focusing on staying in a positive frame of mind. The anger and frustration really come into play at this point. Trying to remind myself these feelings are a result of something I have no control of has proven difficult. At this point I just want some type of pain killer to at least take the edge off. I’m sure those around me would appreciate it as well. I’d be nicer and perhaps stop shouting every time I get a sudden burst of shooting pain and I’d stop biting heads off of people. Not to mention, fatigue is already a huge part of Lupus but being in pain all day every day…exhausting.

1.    comes to mind   A Change Is Gonna Come, Sam Cooke, 1963 - YouTube    

                                 www.youtube.com/watch?v=gbO2_077ixs