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

Lupus: Day 11 No Medication

Day 11 with no medication: What a joke. It was a holiday weekend and I spent a good portion of it sleeping. The screwed up thing is I’m getting used to the symptoms and feeling like crap. Doesn't make for a very fulfilling outlook on things. Lol. I’m still negotiating with my body about certain things, trying to convince it that if it lets me do just this one more thing…lol. It’s not easily swayed but I push it…perhaps a little too much. At forty years old, how could I not push it? I can’t just take it for what it is and stay in one spot. That has never been my style.

Change is coming. Change is coming in a big way and many will be surprised to hear the news but the ball is rolling, my body is tired, and I need a rest. Time to eliminate frustrations, simplify my life, let go of the unnecessary, and grow in peace. Sometimes we must look at our limitations and find the loophole. The way through, around, and passed that thing that is trying to stop or slow us down. Granted, I can’t do as I used to…BUT…I can still do. That’s my focus. So long as I can focus on that…I will push on. I’m excited for the new chapters that await me. One way or another, they will be life changing. 

Lupus: Day 8, no meds

So Friday I was feeling pretty crappy, so much so that my boss sat me down. Got a massage after work to try and alleviate some of my discomfort. I must have worked because despite how I was feeling physically I got home and managed to clear out three bags of things that needed sorting since the move, hang a picture in the room, and cook dinner. Insomnia kicks in and I don't make it out of the living room until 4 AM only to wake up feeling like Superman at 9 AM. Cleaned the entire kitchen, swept and mopped the living and dining rooms, showered, went to lunch and then to the museum. Mistake 100 was the one that pushed me over the edge. Feeling sick and EXHAUSTED.  Home in bed but I needed to document the list of events.

As I was having more and more problems with mobility I simply couldn't figure out what happened that changed the way I was feeling. Then I remembered my spoons. I think between yesterday and today I raided the cutlery cabinet and used everything within reach. EVERYTHING. Now my ass is in bed trying to sleep my way through the malaise but I simply can't. Ugh...this damn disease is so unpredictable. People always ask why I am so reluctant to make solid plans...this is why...I never know how it's going to go. From one hour to the next today I slipped down a slippery slope. Over it.

Lupus: Day 7 No Medication

Day 7 with no medication. WOW. Not feeling well at all. My neurological issues seem to be worse in the earlier part of the day. By evening they are not as severe but they are definitely still there. Was running a fever yesterday, typical of Lupus. What is so trying is the dizziness. I am spinning all the time. Today mobility is becoming an issue for sure. It’s like I have all these ideas of things I want to do or get done but the mere thought of attempting to get out of my chair is exhausting.

I seem to be especially emotional lately and I’m curious to know if this is typical or if it’s out of the frustrations I’m having with the lack of abilities. And confused! Jeez, sometimes I don’t feel like I know which way is up. I continue to push myself to get to work and do the things that need to be done but now I’m starting to evaluate the balance because the lack of concentration is beginning to be more detrimental to my responsibilities. I assumed that my illness would tell me when I was unable to work anymore but in fact I am going to be the one to make that decision. Forty years old and these are my choices. When did my train jump the tracks? This is not at all what I had envisioned my life to be like. It’s nothing like I’d hoped and its sad for me to see my plans go up in smoke. I keep trying to find meaning to all of this. To find a way to use my circumstance for the better, to find fulfillment in all of this, but the limitations brought on by Lupus make it difficult to even attempt.

What’s even more interesting is that I have begun to evaluate people in my life and the energy they consume. To employ a checks and balances where relationships are concerned. Ties I once held on to are breaking free and I am okay with it. I don’t have the energy to entertain those who consistently take and take but never return the favor. Slowly I am recognizing who is a friend and who is a fair weather friend. Surprisingly enough, there are a few close to me that I honestly considered family because our friendships were so deep. But now, when shit is hitting the fan, they are nowhere to be found. I mean, they are around, even by my side at times, but they are only there for what they can get from me, not what they can exchange. 

Lupus day 6, no medication

May 22, 2014: Lupus day 6, no medication

Aside from the physical challenges, yesterday proved to be emotionally challenging as well. For the first time in a long time I had a bit of an emotional breakdown. A release of frustration and disappointment if you will. I was feeling like I had nowhere to turn or anyone to turn to. Then, for a reason only God could understand, I text a friend who also suffers from SLE. Rather than text a reply, she called, and her name on my screen was the only thing I needed to let my emotions flow. I was able to speak with someone who actually knew firsthand what I was going through. Albeit our first phone conversation ever, the forty-five minutes that followed truly helped me release some pent up emotion as well as free myself from self-deprecation. Thanks Roberta.

The symptoms are increasing and becoming more severe as well as uncomfortable. I am sleeping more and more when I can and I seem to be eating less and less. Needless to say, I've lost weight. I can tell by the way my clothes are fitting me. Good thing for the wrong reasons. I am dying to get to the gym but the dizziness and lack of energy won’t allow it. Here goes another summer without that “summer” body. As if the Lupus itself wasn't enough, the neurological symptoms add other challenges. I spoke to my Rheumatologist yesterday and she is reluctant to prescribe anything that might help ease the symptoms because she doesn't want that medication to be toxic to my other illnesses, SO, today I went on a mad dash to send each of my doctors a faxed letter expressing the need for something to be done ASAP.

If you haven’t heard of the “Spoon Theory” please look it up on Youtube. Gives great insight as to what living with Lupus is like. 

Lupus: Day 5 off meds

Here we are, day 5, and it's proving to be a challenge. I got home from work yesterday only to change my clothes and land on the sofa, in a corner, resting and watching TV. I'm still having all the same symptoms I have been feeling but some of the muscle pain has gotten worse and more often. I felt exhausted last night but couldn't fall asleep for a bit. Woke up this morning tired.

One of my doctors text me last night to see if I was stable. This doctor wasn't entirely on board with taking me off all my medications since he is the one who is closest to me and gets to deal with all the adverse things Lupus puts me through. I sent him my list of symptoms to which he replied, "I hope they know". I've notified my Rheumatologist of my symptoms but haven't heard anything from the office.

One of the things that seems to strike me as odd is that I can't seem to regulate my body temperature. I fluctuate from freezing to hot flashes to freezing again. My hands...always cold. And the dizziness, uff, can't stand it.

May 20, 2014

The start of day 4 off meds. Went to bed relatively early last night. Didn't sleep all through the night despite Ambien. Feeling really exhausted, hazy, in a fog, dizzy, anxious, and just an over all sense of malaise. Every time I turn my head the room spins. Not a fun feeling.

Last year when I was going through a rough patch at least I had medication. This...this is cray cray. I have mini conversations with myself and my body and I let it know that it is not okay to get sick. I remind it that these feelings are unwelcome and they must go. I guess we'll see if my body is as hard headed as I am.

It boggles my mind that I can feel so tired and with such a feeling of lack of rest. All I want to do is sleep or be resting and I can't figure out if my body is physically tired or if it's mentally tired from all the sick feelings, joint pain, muscle aches, and dry heaves. How I hate dry heaves. Nausea in and of itself is bad enough, but when that's accompanied by the motion of throwing up yet nothing comes out...not cute

Here we are, years later, but important...days later. Friday May 16th, 2014 two out of three of my doctors decided to take me off all medication to see how my illness has changed and to see how it has grown. Three days down the road and I don't feel so hot. Hell, I don't even feel good. I'm exhausted, nauseous, dizzy, and just feel shitty.

A lot has happened since I last posted an update on here, more than one can get into in a single entry, but as this "experiment" continues with my well being, I will try to fill in the blanks. I hope to document this experience on a daily basis so that we can both know what's happening.