Monthly Archives: March 2012

A Big Ole Thank You!

Happy Weekend! I hope you get a chance to enjoy yourselves. We all deserve it.

I wanted to thank you all for reading my Blog. I know there are lots and lots of other Blogs to read along with other internet distractions. And I understand that you all have really full lives and other things going on other than my Lil Blog.

Blogging is really helping me fulfill my need to write and express myself and I am thoroughly enjoying it. It is also helping me take on the challenge of sharing my life openly with others in a VERY public setting. It is hard to be vulnerable, but it is worth it.

Welcome to my Subscribers! Yay! Feels like I really gotta write now huh? To those of you who have Commented on my Blogs, I have really enjoyed my dialogue with you and I look forward to more conversations in the future.

Feel free to email me. There is an email link on my About Me Page. You are also welcome to Comment and ask Questions if you like. I’m open to Requests for Blog Topics too. If you want to Subscribe/Follow me go right on ahead and there’s always other options of poking around when you feel like it and checking in whenever you like. Some of you have asked if you can Share my Blog with others. Please feel free to do so. I look forward to more connections.

I really enjoy connecting with people. To me, connection is the key.

THANK YOU ALL AGAIN! I can’t wait for more!

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ME Day!

It’s Friday and it looks like a ME Day is in order.

Who is ME? Well I’m ME. Nahleen Blake is ME.

I’ve had quite a week and I am worn out. I’m thankful that I’m not feeling nearly as crappy as I did last Friday so I’m gonna go with that idea to inspire ME to “want” to take even more care of ME. I gotta catch up with ME. I also know my multiple sclerosis and lupus will be thrilled not to be pushed so hard by ME.

It’s time to rest and do what I wanna do. Gonna try not to overextend myself and do only what I gotta do to sustain life and health only. Not gonna push it. Not gonna write a long Blog. Just gonna do and be ME. (I guess that means I get lazy with my English and use words like “wanna”, “gotta” and “gonna” too.)

I’ve learned over the years that it is so very important to have a ME Day. If I don’t spend time with ME then I don’t know myself anymore and I get very drained, resentful and blah.

So ME what do you want to do today? Watch movies? Watch TV shows? Read a book? Listen to music? Love Cleo Kitty? Just be?

My world is free! Have fun ME!

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Symptoms Galore!

I have been asked a lot over the years what all of my symptoms are with multiple sclerosis and lupus. I’ll be honest, I can’t keep track of all of them and I’m still learning the difference between MS symptoms and lupus symptoms. They overlap quite a bit. Let’s see what I can come up with:

First of all, both are auto immune diseases. MS affects the nervous system and I have the form of MS called Relapsing-Remitting MS which means that any and all symptoms come and go as they please. Systemic Lupus (and there’s a much longer official name for it) affects connective tissue in a systemic way and it can affect ALL of my body including my organs. Both are not fun. And as far as all of my doctors know (and believe me I have done the work to find this out), I have both. Good times. Both were very hard to diagnose because the symptoms are very similar to so many other body issues and in my case were diagnosed only because they went through a major process of elimination and my body had to freak out in some way to get the right kind of attention and answers. Plus lupus is known as the “Great Mimmicker”. Well that’s just awesome.

I’M ALWAYS FEELING A SYMPTOM

Yes. It’s exactly what I just wrote. I haven’t had a break of symptoms that I can remember in almost 10 years. It gets very tiring and trying on my patience.

MS AND LUPUS ARE SIBLINGS

They either are getting along really great and team up to affect me, they are arguing or they are competing for attention. Not kidding. They are their own entities.

UNPREDICTABILITY

That is the main theme of what I deal with moment to moment, at all times, on a daily basis, 7 days a week, 24 hours a day. This also focuses on different levels of intensity at all times and all symptoms come in all different kinds of combinations. I have no control over it. I can’t stress enough how unpredictable it is and this is not only very hard for me to understand still but it seems to be very difficult to comprehend if you are not going through it. What this really means is that I never really know how I’m going to feel at any given time. I will go through what those symptoms could be later on I promise. It also means I can’t make any plans that are written in stone. Not that anyone can but there are numerous times I have not felt up to doing something and I’ve had to cancel, or I’ve been somewhere and could only do some of it, or I’ve been somewhere and felt crappy and pushed through it or whatever. Sometimes I feel ok enough during the day. Sometimes I don’t. Sometimes I wake up feeling crappy but it will change and I can feel a bit better. But see better doesn’t mean I’m all better like a cold/flu better. It usually just means I’m feeling an “improved” sort of better and perhaps some symptoms have lessened. I can also try to do something to relieve a symptom and help me get some relief but that doesn’t mean it will work the next time and vice versa. Very frustrating. I think you get the idea.

FATIGUE

Now this is a biggie. Always different levels of intensity. To me there are bazillions of different types of fatigue. I’m also still trying to tell the difference between MS fatigue and lupus fatigue. Plus there are different levels of both. Or I could just have fatigue because I’m human and human beings get tired. Or maybe I have an infection fatigue. Heat Fatigue is a very prominent symptom I have from MS. So I have to be really careful of how hot I get. Plus I’m more prone to getting hot much quicker than a healthy person. And as you can guess the summers are hard. Air conditioning is my best friend. I’ve talked numerous times about wanting a human sized cooler or fridge that I can go into and out of when needed. What seems to happen is that I start running low on battery or it’s as if someone just hit the light switch and I run very low on energy and I start to have more symptoms like aches and pains and stiffness and heaviness. It also makes my head feel pretty foggy so it’s really hard to know that’s what’s happening at the time. All I know is that I feel awful and it’s very hard to have any gumption to do anything. I feel like a completely different person when I’m hot compared to when it’s cool. And then to really complicate things, I have a really hard time with lupus and its connection to the sun (to be discussed in a bit) and when I’m in the sun I’m suddenly really hot and low low low on energy usually and as I just told you I have a hard time in the heat due to MS so the MS starts overreacting and then both lupus and MS act up together. Ugh.

PHOTOSENSITIVITY

Different levels of intensity. Photosensitivity or sun sensitivity is a large issue with lupus. It’s as if I have an allergy to the sun. When I’m in the sun I have a tendency to get itchy, I can feel nauseous, I can feel lightheaded, my eyes can’t seem to take in all the light (apparently affects both MS and lupus in different ways but with the same symptom), I can feel achy, feel stiff, you name it. So I have to wear sunscreen all over my body regardless of wearing clothes or not. The UV rays can reach me through the clothes and still affect me big time. I need to wear hats and the more coverage the better. It’s also best to wear long sleeve shirts and longer pants and even socks and full covering shoes. Well great. So the clothes help the lupus but then I still might get overheated so now I’m starting to get heat fatigue and my MS gets affected. So there’s always finding a balance and nothing can feel perfect and there’s a lot of negotiating with the body. Nothing is ever perfect or happy.

ACHES/PAINS

Intensity is very important with this one. Aches and pains can be different and similar. They are hard to differentiate and there are all different kinds. They usually happen in my hands and arms but they can happen anywhere else like in my legs, back, or neck for example. Sometimes they’re really intensely bad and sometimes they’re just there. Sometimes they go away like the rest of them. Sometimes they affect my ability to move like walk or type and sometimes they don’t. I can get a lot of pain in my joints and the joints are affected by lupus. I just learned this. These are MS and lupus symptoms.

STIFFNESS/SPASTICITY/TIGHTNESS

Same theme: lots of different intensities. My muscles, nerves, tendons, ligaments, joints (you name it) get stuck or harder to move (in general). I can get this anywhere too. A lot of times it happens in my joints or with my muscles or my limbs. It affects my ability to move around and function in general but also my balance, flexibility and coordination. If I sit too long I get more stiff (anywhere). If I stand too long I get more stiff (anywhere). Or sometimes I don’t get stiff at all. These are lupus and MS symptoms.

TINGLING

Intensity does play a part. It’s an MS symptom. It all started with tingling on the bottom of my feet but it can happen anywhere and strangely enough I haven’t felt tingling on the bottom of my feet for a long time. Not sure why but I’m glad it hasn’t continued. It was incredibly distracting and annoying.

BALANCE

These issues aren’t as prominent but they do happen and are mainly MS symptoms. I really should use a railing when going up and down the stairs and I have to really watch my footing when moving, getting up, exercising, etc. Sometimes my balance is affected by how my muscles and joints are reacting too.

COGNITIVE PROBLEMS

These symptoms are hard to admit. They are the symptoms that affect my brain and ability to think, communicate, my memory, my concentration and focus and ability to recall. These are MS symptoms. They also have affected my ability to write sometimes and get the right words out. I can’t do math and work with numbers as well as I used to. I can’t quickly recall. There are times I slur. I can be having a conversation with someone and completely lose track of what I was talking about and lose myself. I am affected by loud music and by too much light. I get overwhelmed very easily from overstimulation (and there may not be much going on). There are times I can get really confused and this all takes a lot of patience.

DIZZINESS/LIGHTHEADED

Oh yeah. I get this from time to time and sometimes I just can’t describe it. I don’t think it’s even the best way to describe it but I feel loopy. There really are not enough words in the English language to describe a lot of this. It’s just what it is.

DIGESTIVE ISSUES

I’m gonna be honest here so bear with me and it might be TMI but we’re all human and we go through these things. These are mainly lupus symptoms with some MS sprinkled in. They include nausea, acid reflux, what I call just an upset stomach, gas, constipation, diarrhea, bloating, not hungry, too hungry, etc. Sometimes these cause fatigue too. Some of my symptoms have been caused by food allergies (that I just learned all about in December 2011) and I’ve also had problems with small intestine bacterial infections in the past which required mega rounds of digestive antibiotics (basically a detox). Very unfun. A lot of these issues have calmed down but I still deal with them. In fact, it was severe nausea and vomiting (I DON’T USUALLY VOMIT–to be honest) that stopped me from working in June 2010 (all the other symptoms I somehow pushed through like a crazy person) and lead me to the emergency room only to find out I had toxic liver levels (liver was affected by a major lupus flare I found out in August 2010) that lead to the severe nausea and all. I tell ya. I don’t EVER want to repeat that. Awful. Just awful.

ECZEMA/SKIN RASHES

Any redness or dryness of my skin and even acne can be caused by the sun and/or lupus. I gotta be really careful with the sunscreen I use and the lotions/moisturizers. Plus I have rosy cheeks which apparently is not a good thing according to my doctor because it means I’ve been in the sun too much. Well, I like my rosy cheeks but what do I know? And I gotta be careful with skin rashes because they can lead to staph infections. I tell ya. The stuff I deal with.

DRY EYES

Yep. I have very dry eyes. That is from lupus. Not comfortable at all and it stops me from being able to wear contacts which I would love to be able to wear again like I did a long time ago. Sad.

DRY MOUTH

And again. The dryness comes in. Both dry eyes and mouth are connected. This one isn’t too bad but can affect me.

MOUTH/DENTAL PROBLEMS

I had no idea this would be affected too. I can get gum inflammation and my teeth can hurt and I can get mouth sores. These are lupus symptoms.

HAIR LOSS

This doesn’t happen too much anymore but it can. I have actually had a lot of new hair growth since I’ve been in recovery since June 2010 thank goodness. Apparently my hair line was receding for years because my hair line has completely changed. This is a lupus symptom.

PRONE TO INFECTION

No doctor has ever completely confirmed this and said it directly to me but it has proven to be true time and again that I am prone to getting upper respiratory infections, sinus infections, small intestine bacteria infections, etc. I don’t get to have the privilege of avoiding “sick bugs” just because I have two diseases. Seems to me like that’s totally unfair. I mean, don’t I have enough?

FEVER

This can happen with lupus and seems to happen with me when my body is already inflamed. I gotta be really careful with this because if I get any higher than 98.6 (my normal is usually 97.6) then it means I get warmer and here comes my MS issues with heat fatigue yet again. Plus I have to wonder if I’m coming down with yet another infection of some sort. Very irritating.

FEMALE SYMPTOMS

I’ll name this with a polite term. But yes, all of my female symptoms act up due to lupus and MS because apparently they weren’t enough fun anyway.

BLADDER SYMPTOMS

I don’t get as many of these as I hear others with MS might have but I can feel like I have to go (again probably more TMI than you’d like but I’m gonna be honest) and then not be able to, or that I have to go a lot and run to the bathroom too much or it wakes me up in the middle of the night.

SLEEP ISSUES

Of course my sleep has to be affected. I can be having symptoms that wake me up from discomfort, or not be able to go to sleep in the first place, or wake up a lot during the night. These are MS and lupus symptoms.

LOTS OF ALLERGIES

No doctor will tell me that I have environmental allergies due to having MS and lupus but I’m not surprised I have them. They still happen. I think it’s that I’m already really physically sensitive so why not add more. It all fits together to me.

MALAISE/OR AS I LIKE TO CALL IT “FEELING BLEH”

Come on. You know what it’s like to feel “Bleh”. There is no other term for it. I just don’t feel good. Can’t describe it any better than that. It’s “Bleh”.

DEPRESSION

Yes, I’ve gone through that. Not only is it an actual MS symptom but I’d be surprised if I didn’t go through depression issues. It is VERY HARD to have a chronic illness but now that I have two it’s even more of a challenge to deal with and to try to get through life and make an attempt at having a normal one.

I have a feeling I’ve left some symptoms out (hard to believe I know) and this really is a general overall view of my symptoms.

So how do I combat all of these? I have no idea. I have a lot of things I try but sometimes I gotta let them play out. I’m sure I’ll Blog about them at some point but right now my hands and arms are yelling at me (aching and inflamed) and had better stop.

Hopefully this helps you understand me, chronic illness, and MS and lupus more. Plus these symptoms are different to everyone with MS and lupus and can feel different than what I talked about. It’s very confusing. It actually helped me just to write about it. Right now I hope I don’t get anymore symptoms because I don’t know if I have any room for more.

You hear that body? That’s enough!!

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Motivation: PURPLE HAIR!

I’m frustrated. I’m getting caught up in long term disability red tape that is driving me crazy! This included a call to my lawyer’s office with a plea for HELP regarding money. Money always gets me stressed out. Today has also included other really fun things like paying other bills, pulling medical paperwork together, doing my Physical Therapy exercises, and trying to take care of me. Pretty soon I’ll be headed to a Physical Therapy Appointment. And this is what my daily life looks like most of the time. A few changes here and there to the schedule but it is a constant flow of medical stuff (I’d like to call many other times) that all leads back to me having multiple sclerosis and lupus and it wears me out.

So what’s my motivation to get through today? PURPLE HAIR! Yep. I have it. I gotta have something to keep me going when I look in the mirror. Otherwise, I see someone (me) who I’m frustrated with who has two chronic illnesses and is not doing what she wants to be doing for her career. But I tell ya, just one glance at myself and I get a smile on my face. It’s so cool.

So why PURPLE HAIR? Why not? I’ve loved the color PURPLE since I was ten. My love affair with PURPLE has gone on most of my life and it helps me feel better. And I’ve wanted to have PURPLE HAIR probably since I was a teenager and IT IS ABOUT TIME! Sure I’ve had magenta streaks in my dark blonde hair but they are not PURPLE! I’ll admit it. I didn’t have the guts to have PURPLE HAIR for a long time. Then I found out I’d have to re-PURPLE my hair frequently and that it was quite a mess to clean up and I didn’t want to bother. And when I had magenta streaks they washed out due to all the red dyes and I’d be stuck with boring dark blonde hair. Boooooo.

And it all changed about 2 months ago when I was looking at myself in the mirror and I just knew I needed PURPLE HAIR. This was it. I was gonna do it! The first attempt didn’t come out right at all. It was a nice coppery color but it was NOT PURPLE. The second attempt was really neato and it included lavender streaks throughout my hair with the base color like a chocolate brown. Yeah, I’d have to re-PURPLE my hair every week or so because it would wash out but who cares? IT’S PURPLE HAIR! And then the third attempt wasn’t intended to be an even different color PURPLE and it is so awesome. I had gone to four different beauty supply stores to look for the brand of PURPLE hair dye I had been using and I couldn’t find it anywhere. However, in an interesting turn of events one of the stores was selling a different brand PURPLE HAIR dye they said might work.

Well did it ever! My hair now has dark PURPLE streaks (sometimes an indigo blue in different lighting) and is a darkish color where the chocolatey brown was (not sure of exact color because there is a violet hue to it but it’s definitely not brown right now). And as Corey (my husband) says, it GLOWS!

VICTORY!

I’m having fun. All it took was some color and some hair. That’s it. NOW I FINALLY HAVE MY PURPLE HAIR! Can you tell I’m excited?

I’ve found that in order to get up in the morning I need different types of motivations. PURPLE HAIR is one of my favorite motivations. What is your motivation? What is your PURPLE HAIR???

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I’m Not the Only One

Nope. I’m not the only one with multiple sclerosis and lupus. I’m not the only one who has a chronic illness. I’m not the only one struggling right now. I’m not the only one having a hard time with life in general. It is NOT all about me.

As much as I know this, it helps to get perspective and see OVER AND OVER AGAIN that the world is not all about me. Yes. I have an ego. This is a hard thing to admit. I kinda feel like a bad person and that you’re all gonna hate me for telling the truth but I know it’s not true.

A wise woman once pointed out to me that our own problems are personal and they are about us so of course WE WILL BE ON OUR OWN MINDS. Now that I’m writing this I can see that I am all I have. But then I have a choice. I can expand that and reach out to you and say WE ARE ALL WE HAVE. It is tricky for me to balance these two ideas because they are so profound to me and I’m confused about what my priority is. The lines get blurred and there are a lot of grays. I need to take care of me in order to reach out and help someone else. It is the whole idea that I have to put on my oxygen mask first before putting it on someone else. WHAT?! AAAAAAHHHH!!! Well now I’m overwhelmed just writing this. There really is a fine line isn’t there?

My whole point is, I know there are a lot of you out there who are going through really hard times right now and that I am not the only one. I also know that I’m not alone and neither are you. I’m sending you love, positivity, supports, cheers, silliness, laughter, hugs, and anything else I can muster up…that is, as long as I’m saving some of this for me.

On that note, please feel free to Share my Blog with others if you’d like, Follow my Blog yourself, and leave me any Comments you’d like to me. I’d really like to open up a dialogue about all of this. To me, connections are the key.

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Diagnosis Part 1: It All Started With Tingling On the Bottom of My Feet

Would you think that was multiple sclerosis? Neither did I at the time.

It’s been almost 10 years (April 2002) since I started feeling symptoms my brain recorded as a red flag. I don’t remember feeling anything worth noticing before that but I’m sure I felt fatigue, some stiffness, and some aches and pains before that but I passed it off as getting old. Yep, being the ripe old age of 25 is “getting old”. You know.

Right around that time I had decided to jump right into a heavy exercise routine, a strict diet, and I was working full time at a television station (need I say more about stress?–and that was 10 years ago…). My exercise routine included walking almost daily and I know I wasn’t wearing supportive sneakers at the time. I had “planned” to get some. Uh huh. Well I didn’t make it to that point when I started feeling this weird tingling on the bottom of my feet. It wasn’t anywhere else. Really. This kind of tingling was noticeable for sure.

So I thought perhaps my shoes were too tight. I tried loosening the laces because I thought maybe I was losing circulation…and it didn’t stop. So I figured perhaps it was time to get some really good supportive walking sneakers. Tried that. The tingling didn’t stop but hey I had more support. Sometimes the tingling (on the bottom of my feet–remember) would come and go. There seemed to be no pattern. (Looking back as I’m writing this, I’m sure there was a bit of a pattern–like perhaps I needed to rest some more but resting was foreign to me. Otherwise, I’m sure it was unpredictable because that is the best way to describe MS.) And then I had also been working as a Production Assistant on the side (needed to get that Production Experience for my resume and heck I was invincible so why not add more to my plate?) on a short film and can remember telling the Director that I could work on the set but I’d need to put my feet up here and there if the tingling got really bad. Hmmmm. That didn’t really help anything either…

Somewhere along the way I guess I had gotten too tired of having tingling on the bottom of my feet (just a little annoying and really hard to IGNORE…) and went to my HMO Primary Care Physician (HMO is noted on purpose because it’s quite relevant in so much of my story with the type of healthcare I was receiving especially in the beginning) and he wasn’t sure what to do with me. I don’t remember the exact timeline but I can remember having to start really pointing out to him that the tingling WAS NOT OKAY AND IT WAS NOT NORMAL. I really had to push him. This will become quite the theme of my health journey. This need to really push my doctors to help me in order to get any answers was my driving force to get me help. If I hadn’t started having MY OWN VOICE and hadn’t been so assertive and stubborn who knows how this all would’ve played out.

Because I was pushing my doctor to help me more, the blood tests started (and haven’t stopped since, to be honest). Then when that didn’t really come up with much, he FINALLY started trying to send me to Specialists. That’s pretty hard to do and is quite a rigamarole to get through all the approvals just to see a Neurologist when dealing with an HMO. Right before he sent me to a Neurologist, one of the most poignant lines he said to me that I can still remember is, “You don’t feel any tingling anywhere else right?”. So then of course I looked at him quizzically and my heart started beating just a little bit more (because I knew NOTHING about MS or anything of the sort). And then I responded with something like, “No. Why?”. And you know? He still avoided really answering me and kind of brushed it aside. Hmm. Makes me wanna kick his butt right now (knowing what I know now and all) just thinking about it. And I asked him again at least once more to elaborate and he said something dismissive like, “Well it could be something more serious. Especially if the tingling starts to go up the side of your leg or something, or it happens in your hands. But we’ll see what a Neurologist says”.

And that’s when the journey to find myself really started. Let’s just say, that first Neurologist and her partner DID NOT HELP ME AT ALL. That’s a whole other story for a whole other Blog. I’ll definitely be breaking up this story in a series of installments because it is quite a story. Not sure when I’ll be feeling up to writing the next part but you’ll know.

Thank you all for reading my Blog so far. It is really changing my life. Feel free to comment on any of my Blogs and you can email me by clicking a link on the “About Me” Page if you like! I’d love to hear from you!

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Wishin’ Y’all a Fantabulous Weekend!

It’s taken me a few hours today (Saturday) to be able to commit to the idea that I’m feeling a bit better than yesterday. I’m careful to say that. You know what? Maybe it’s better to commit to the idea that I’m feeling better at this moment than I did all day yesterday. OK then. I’ll go with that.

Here’s what I wish for y’all this weekend: fun, fabulous-ness, fantastic-ness, love, life, connections, nature, a breath here and there (good to sustain life), smiles, laughter, peace, relief, feelings, quiet times, loud times (if that’s what you’ve been looking for), simplicity, The Hunger Games (What? There aren’t other movies playing this weekend are there?), recreation, productivity, self care, kitties (and animals too–yes, I’m obsessed with my Cleo Kitty but she loves me anyway), less discomfort and much more comfort, a good hair day (Let’s all face it. Life is much easier when your hair behaves.), less stress, and most of all: may you feel satisfied with however life plays out. Yeah, this last one’s a hard one for me too. Gonna just try to go with it.

Disclaimer: All of these things are open for interpretation. And yes, of course I haven’t covered it all. If you’d like to include more things please feel free to leave a comment. Would love to know about your weekend.

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WAIT

NO.

That’s what my head says. I woke up feeling awful. Heavy, fatigue in all kinds of forms, aches, stiffness, soreness (from Physical Therapy), weakness, blah, very slow and symptoms I haven’t found words for along with an overall feeling of NOT FEELING GOOD! EXHAUSTED. DONE.

Not happy. What about being like “all the cool kids” and seeing “The Hunger Games” movie on Opening Day? What about groceries? What about laundry? What about ANYTHING?

WAIT.

That’s what my body says. For 8 years (diagnosed with multiple sclerosis in December 2002) I didn’t listen to that enough and I kept doing my thing. Sure. I had to take SOME sick days when I was kicked on my butt, but I pushed and pushed through really hard and stressful days at work and I kept trying to do whatever it takes to MAKE IT HAPPEN. I had to let go of doing a lot of stuff and had changed my whole perspective of things since the MS diagnosis, so what was the problem? I mean, I had it down. If I just followed my own formula of “doing what I needed to do with my body to keep me going” then it would work. You know? That method played out until June 10, 2010 and I am still trying to recover from a COMPLETE BODY IMPLOSION.

In June 2010 I HIT A WALL. I had to be severely nauseous and unable to take any stimulation (light, sound, talking, reading, eating, you name it–what I call a Body Migraine) and have crazy high and toxic liver levels to make me STOP (liver levels are normal now thank goodness) and to make me WAIT. (More on that whole experience in a later Blog I’m sure). And then it wasn’t until August 2010 that I was diagnosed with lupus and clarity knocked me over. I had to LISTEN to my body and stop making deals with it and include it in the decisions about my life. My head couldn’t run the show anymore.

So today I STOP. WAIT. LISTEN. And I give my body RESPECT even if I’m really upset about it and I feel like I’m missing out on all the activities of “normal human lives”–as if I know what those are.

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It Takes Me 4 Hours

I’m soooo tired of it taking so long for me to get up and get going in the morning. It takes me 4 hours. Yes, 4. I’m not exaggerating. And I’ll be honest, sometimes it takes me longer. If I don’t take that 4 hours to do it right than something suffers and there have been quite a few times this has happened for whatever reason. Sometimes things just don’t go as planned.

Why does it take me so long? Well, let’s see. When I wake up I can’t just jump out of bed. I have to take some time to stretch and meditate to get my head and body in line a bit and to try to loosen up. Then there’s feeding Cleo Kitty and taking the first round of meds with some food. I can’t eat all at once. I have to take my time because otherwise my belly yells at me. (I have recently learned that I have a lot of food allergies and have dealt with a small intestine bacterial infection off an on too along with other issues that I’m sure will come up in another blog.) Then I need to set up all the creams and things given to me by my dermatologist (yes, I have skin issues too) and of course I do have a bit of vanity (just a bit) and I want to wear some jewelry (the sparkly and colorful the better) and make sure my hair isn’t scary. Oh and then somewhere in there is my shower which can wear me out. A 5 minute shower can really take a lot out of me and it’s very rare it’s only 5 minutes. Then I need to put on special lotion since my lupus reaction to the sun is that I get very itchy (as if I’m allergic to it) and then comes the sunscreen which must be applied to the full body. Whoo. I’m tired just writing this. So then somewhere in there comes the next round of meds and eating some more and drinking a special anti-inflammatory tea and some much needed rest. If I don’t rest here and there then I’m really in for it. Resting includes some time in quiet and some time looking at Facebook and Twitter, of course, and my favorite weather sites and sometimes I check the news headlines to make sure the world hasn’t ended yet. And somewhere in that 4 hour period of time I need to do at least 45 minutes of stretching. I am truly committed to this because if I don’t stretch than my body has a bad day. And at some point there are some other things like getting dressed and things that might be considered TMI. You know. We all go through it.

So yeah. Those are just the basics. It’s a wonder I have any time or energy to do anything else but I usually do if I keep all of the above mentioned things as part of my routine.

But we all gotta do what we gotta do to live our lives and apparently this is what I need to do. I try to just go with it but sometimes I just wanna be able to get up and run out the door and start my day and not pay for it physically and mentally. Or maybe I could try to cut it down to 3.5 hours instead?

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What Do You Do To De-Stress?

Feel free to share. I’m always looking for ways to relax, breathe and get rid of icky stress. Here’s what I’ve come up with in no special order:

1. Take a walk.
2. Love my kitty.
3. Be outside.–Now this gets really tricky because I have to be careful of sun exposure (lupus) and of getting too hot (multiple sclerosis).
4. Look at the sky.
5. Spend time with my plants.
6. Buy myself some flowers.
7. Guided imagery.
8. Meditate.
9. Acupuncture and acupressure.
10. Rock out to music.
11. Chill with music.
12. Dance.
13. Put my Hulk Hands on and punch walls.–Not recommended with unstable walls and with other living beings.
14. Laugh.
15. Do my special bath soak that includes quiet music and muscle soak bath salts.
16. Create with my hands.–bake, draw, write, color.
17. Explore.
18. Be in a really dark room.
19. Watch the right kind of movie at the right time.
20. Read the right kind of book at the right time.
21. Watch the right kind of TV show at the right time.
22. Bang drums on Beatles Rock Band.
23. Talk with others.
24. Get out.
25. Find a spiritual path and try to stay on it as long as I’m not trying too hard.
26. Spend time with loved ones.
27. Give myself nothing to do.
28. Exercise–sometimes.
29. Write Blogs–apparently.
30. Take care of me.
31. Watch live music.
32. Listento the right kind of music at the right time.
33. Theatre/Improv shows.
34. Going to Corey’s shows.
35. Corey and Cleo time.
36. Travel–if I’m feeling up to it.
37. Connections with others.
38. Play with Cleo Kitty.

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