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Look at what I baked today!  These are what I call Snickerdoomolasses Cookies!  They are a yummy mistake!

Smelling yummy!

Looking yummy!

Yummy Everywhere!

When I feel up to it and the time is right, I LOVE to bake!  It’s great to get in there with my hands and make yummy art.  I am a very creative person and if I am not expressing myself enough I feel it.  Baking is a wonderful way to release stress and it is also very helpful for my stiff and achy hands to get moving.  With multiple sclerosis and lupus I’m not able to bake as much (takes up a lot of energy and when fatigue is present it turns into a chore instead of something good for me)  as I’d like or to bake from scratch that often but I’m an old friend of Betty (you know, Ms. Crocker–I’m guessing you’re familiar with her), Duncan (of the Mr. Hines sort) and the cute little white doughboy and they have helped me a lot.

What’s so cool about today is that I made an Oops by adding WAY too much butter to the molasses cookie mix and I didn’t give up everything and let it ruin my day.  I remembered I had a snickerdoodle cookie mix in the cupboard too and I added some of that which saved us all from a disaster!  It came in with its cape blowing in the breeze and added what it could to the dough.  Isn’t that nice?  Thanks to me, your Saturdays have not been ruined by my baking mistake (gotta love how I think I’m the only one who’s ever made a mistake baking or cooking) and I have come up with a new cookie.  Introducing the Snickerdoomolasses Cookie!

And are they in fact yummy, you ask?  Well, it just so happens that as I was moving the cookies to the plate one of them broke and we couldn’t have that now could we?  So, I tried it and it was yummy…it was melt in your mouth yummy (you know, just a LITTLE bit of butter had been added in the beginning…)!  Victory!  Go me!  It worked!  It is so satisfying to try something and have it work out.

I think I would also like to note that I’m feeling better today than I have in awhile.  The MS and lupus have been kinda quiet for me so far.  I’ll take whatever I can get.  And again, go me!  Another victory!  Gotta focus on the victories where I can find them and stockpile them for use on harder days.

That’s my good news for the weekend.  Looks like Saturday is working out so far.  Yay!  Hope you all have a great weekend!  And many many thanks to those of you who are reading my Blog!!!  You are all so awesome!!!

Hey that's me with Purple Hair!

Hi.  Yep.  That’s me.  There I am standing on the sun deck where I like to go and take sunset pictures almost every night.  I bet soon I’ll be posting them on here soon.  Don’t mean to do advertising for some other companies in this picture but they’ve been there for me all these years.  You know.  We go way back (been living in this current abode for almost 8 years I think).

Yes, it's a purple hair shoot! I love my purple hair!

It sure was windy that day!  My goodness.  This is another angle of the sun deck.  I know you were all wondering.

Crazy purple curly hair! Can't help but love this picture.

Holy Windy!  This is probably my favorite picture of the shoot.  Gotta love the wacky curls and those purple streaks.

Disclaimer: Purple washes out quickly so I need to re-purple every week.  Thankfully it’s not a hard thing to do or you can bet your booty I wouldn’t do it.  The neatest thing about it is that the purple hue changes every time I re-apply.  Helps keep it fun and reminds me that change is always in the air!

I loved my Nana bunches. She was a really neat lady.

She had this really fun tradition every year at Easter. She’d have a jar of jelly beans we couldn’t eat just because they’re yummy and she’d make us work to get them. And usually only one of us would actually get those jelly beans. If we were lucky, we might be able to get some jelly beans from the charitable winner if we didn’t win them.
What we’d have to do is guess how many jelly beans there were in the jar. And if we guessed closest to the actual number (there was a serious count after all the guesses had been recorded) without going over, then we won not only the jar of jelly beans BUT there was a First Prize. And whomever was furthest away from the number would get the Booby Prize.

Now sometimes the Booby Prize was better then the First Prize so it was hard to decide if you wanted to purposely lose so you could get the Booby Prize. I mean, it was serious. Other times, people were just WAY OFF and had no idea what they were doing. It was fun.

Over 12 years ago when Corey and I moved to Los Angeles, CA from the east coast, I continued that tradition and have been doing so ever since. It’s a little bit challenging since our family isn’t here with me and they are all still on the other side of the country, but I make it work. I do change it up a little at times. Sometimes it isn’t a jar but a different type of container. Most of the time I mix in different types and sizes of the jelly beans so you never know just how many are in that jar.

This year we made a little video (not sure why it’s so pixelated but apparently we aren’t perfect) for our families across the country so they could really see the details this time. Cleo Kitty also gives us her Greeting (hmm–is she really Greeting us?) and my Purple Hair makes an appearance. It’s very exciting!!

What was also cool was that I had a body crash Saturday night. My body and mind decided they were all done. No more. Doesn’t compute. Over-stimulation was running rampant. I felt pretty crappy. And so on Sunday I wasn’t sure how I’d be feeling for anything and what’s great is that I was feeling a bit better and putting this Easter Jelly Bean Contest together helped distract me just enough. It was fun! I’m happy to say that today, Monday, I’m feeling even a bit better-er. I hope it continues. I like it when I feel better.

Anyway, for your viewing pleasure, here is the Easter Jelly Bean Contest 2012 video. Thanks Nana for such a neat tradition! I love you and miss you so much.

I don’t know who this Me person is but I hope they’re nice. I know how “Me”s can be. They can give us lots of pressure and push us to do things we might not be up to. They can say mean things to us and somehow get into our heads. They can be indecisive and moody. I mean moody. I hear this Me person has been quite moody all week.

Then again, “Me”s can be loving and nice and fun. They can be a good companion and give us love. I’ve heard this Me person puts fun colors in her hair and can be pretty cool. Word around town is that she giggles a lot too. You know what? I bet it’ll work out okay.

I KNOW it’ll be okay. Why do I know this? Because that Me person is, well, me. I am me. I talk about myself in third person because it is very easy to forget me, to sometimes get separated from me and leave me out of things. That leaves me very unhappy, feeling lost and disconnected. I’ve found that if I don’t give myself some time to just be with me and love me for who I am then I suffer. Sometimes that takes me actually making the effort to make an appointment with me so that I can commit. I don’t feel like a whole person if I don’t at least try. I feel like someone who spends all of her time dealing with multiple sclerosis and lupus. And along with that comes a crazy amount of doctor appointments, endless medical business phone calls, endless administrative medical business, regular life things, exercise and resting for recovery.

There is a whole other part of me. I like movies a lot and would love to produce more of them. I read lots of books like Game of Thrones and Hunger Games. I like to get out and be with nature while gazing at the sky. I love the color purple. I love my Cleo Kitty, my husband Corey, my family, friends, connections with others, and the list goes on and on. To me there’s nothing like being artsy and exploring a new area. Or how about live music shows? And that’s all just the beginning.

And you know what’s also awesome? Sure, I feel tired today. It’s been a long crazy week filled with emotions and lots of activity (Physical Therapy is an example) and of course I’d be tired. For the past two weeks I haven’t been able to get out. Sure there’s been some time with me but it’s the getting out with me that brings it to a whole new level. This time it gives me a chance to escape from my crazy head. There is a whole other world out there. I get to be more of a part of it.

So what am I gonna do today? I’m gonna get off this computer, pull myself together and FINALLY (as if it’s been out forever) go see the movie The Hunger Games! Yep. So here I go!

NEXT UP: An Appointment With Me!

Ugh. I don’t want to do this anymore. I don’t want multiple sclerosis or lupus. I don’t want to wake up and try to get through another day this way. Why won’t it just all go away? I want it all to leave me alone! I’m busy!

All of these feelings just keep stirring up in me lately. I have a good idea it’s from writing these Blogs and sharing myself and digging it all up. I know it’s for the best. I know it’s healthy to feel. But it’s a lot. It’s overwhelming.

I find myself in these waves of feeling sorry for myself. I start to cry and I’m not sure why. I still have tons and tons of grieving I feel. The grief feels endless.

When I was 25 I had my life ahead of me. This was it. I was invincible. Nothing could slow me down. Go go go. Push push push. I wanted more and I was gonna get it. You name it. There were no limits.

And then life hit me in the face, in the body, the whole ego. I was knocked down. It was more mental at the time. Yeah physically I felt crappy but I wasn’t too aware of it because I was the energizer bunny and I had some major denial. I couldn’t believe I’d have to have an MRI. I couldn’t believe that the MRI technician would look at me as I came out of that AWFUL tube as if I was going to die. I couldn’t believe I would have to be rolled out to see my sister and my husband in the waiting room in a wheelchair. I couldn’t believe I was alerted to call my doctor the first thing the next morning and it was very important I do so. How did I sleep that night? I doubt I did. I was completely freaked out. I couldn’t believe it the next morning when the doctor called and told me to get to the hospital now because there was something SERIOUSLY wrong with me and she was really worred. I am truly grateful that my sister was there visiting (soooo sorry to this day that her trip was completely altered by this situation) and she helped me get through it. And then to see my husband at the hospital helped so much. I lost my innocence then. That was it. WHAT WAS WRONG WITH ME? WHY WAS THIS HAPPENING? WHAT DID I DO WRONG? HELP?!

At first they thought it was a brain tumor. Then they thought it was a brain infection. Then perhaps it MIGHT be MS. Those were the 3 longest days of my life in that horrible hospital.

AND IT’S BEEN ALMOST 10 YEARS SINCE…

How did that happen? I never thought I could face another day. I didn’t know how time could pass. I was so horrified and traumatized by the entire experience. I felt weak. I felt defective. I wanted to run away from me.

But I didn’t. Somehow I didn’t. I’m still here with me. I have a wonderful husband who never left me. He has taught me how to be with me. I have loving family and friends and a major support network who has held me together. I’m still trudging on my path and along the way I picked up another disease, lupus. I still have so many of these painful feelings. I still feel weak sometimes and very much like a burden. I still feel defective. I still feel so much grief from new things and sometimes it’s the moldy kind that’s been sitting in me very down deep in my soul. Some of that is definitely coming up now.

I don’t want to do this anymore. I don’t want to have to deal with it but I will. Why? Because I don’t like the other choices. I either live with it or I don’t. And somewhere along the path I have learned to slow down enough to get to know me better, to stop and smell a flower, to look up at the sky and gaze at the clouds (and they always bring me some peace), to talk to a friend, to smile and connect with a stranger and to put one foot in front of the other. And for all of these things I am truly grateful…

Thank you all for reading. This was a hard one. Sometimes it feels like a big emotional hairball that just needs to come out. This was one of them. And I am feeling some relief now.

I guess I gotta just KEEP ON KEEPIN’ ON!!

Trudge trudge trudge.

We’ve all been through this. At least I hope we can all relate to this or a version of what I’m about to describe about going to a doctor appointment.

We have a lot on our minds and probably a lot to do. As we drive through annoying traffic (if you’re like me, even one other car on the road–ha ha ha in Los Angeles, I know) and we need to make sure we find the right building/address. Parking is its own frustration: do we park in the garage or on the street? Will we get a parking ticket on the street, and if so is it more expensive then parking in the parking garage? Let’s face it. Parking garage fees are ridiculously sky high and there is RARELY validation. We finally park, gather ourselves together and make our way to the elevator. OH yeah, and what Suite is it? We look at the Directory (if we think of it). After waiting for the elevator and probably stand in awkward silence with another stranger (probably looking at our phones because it would just be WEIRD to look at the other person or even at our surroundings) we get on the elevator and wait for our floor. Sometimes it takes awhile to get to our floor because other people need the elevator too and there may/may not be stops to make. We finally get to our floor, perhaps feeling nervous or at least resentful that we have to be where we are, look at the direction signs on the wall (hopefully there are some), pass a BUNCH of closed doors (comfortable and welcoming for sure) and find the Suite we are looking for. Right now probably lots of things are running through our minds and the top focus is that WE REALLY DON’T WANT TO BE THERE.

As we get to the door, hopefully there’s a sign/name plate thingie that says, “Dr. Whosajiggie” or “Whosajiggie, MD” or something of the sort (which helps confirm we’re in the right place), we turn the door and we open it up. What do we see? Bright fluorescent lights beam from the ceiling that make us yearn for our sunglasses, white walls (usually in my case), chairs up against the walls (and probably uncomfortable and LIKE NOTHING YOU’D HAVE IN YOUR HOME), perhaps there’s a table in the middle of the room with magazines in mixed up piles, some of the chairs have people (at least you think they’re people because they look like people but they don’t look at you and have distanced themselves within their own circumstances), and there’s probably a half wall/desk with someone sitting at it. (More about personalities and procedures will probably show up in another Blog.)

Does any of this sound familiar to you? It’s definitely been most of my experiences going to see doctors. I mean, I’m probably going there because I don’t feel well or I’m unhealthy (unless it’s years ago when I really only went for a yearly Physical whether or not I needed more medical attention) and that holds very true for me in the past year and a half. I really am a Professional Patient. I’ll admit it. I don’t like it but it’s the way it is right now. I’m hoping to change careers at some point in the future. Well, I had better.

I’ve spent way too much time in the waiting rooms and exam rooms of doctor’s offices. I’ve seen way too many white walls and bright ceiling lights. If there are pictures on the walls they are usually the generic kind you get at a factory. You know the type of pictures I’m talking about. It’s like it was an afterthought and someone was walking by and decided that wall just looked too boring so why not put something up? And I tell ya, the magazines are endless. Sometimes they look like they have been man-handled thousands of times and then put in the washing machine. Most of the time they are magazines that don’t matter to me. Then again, magazines don’t usually help calm me down anyway.

I think I just hit on a point. The idea of “calm” in a doctor’s office. Who here has felt calm going to a doctor? Exactly. Something is bothering us about going. So once we get there we walk in and it feels so uncomfortable. There have got to be better chairs out there. Why choose THOSE? Sure, I’ve been in waiting rooms that have included sofas but they really aren’t so great when they are too low so you almost fall in them or you find you really can’t get out of them (I don’t know about you but it’s not my favorite place to hang out for extended amount of time), they look worn out or there are people on them who really aren’t gonna move over for ya and if they do, we all end up in each other’s laps anyway.

Of the bazillion doctors I’ve been to, there has been one waiting room that has been the most comfortable for me. It wasn’t like a living room (although I’d take that over mustard yellow and bright white any day) like one of my doctors seems to have (and don’t get me wrong, it was comfortable but it just didn’t feel right since I’d still be seeing a doctor ultimately and not feeling very much at home) but it feels as if a feng shui expert had been hired and they really took the time to try to make it comfortable. The walls are a grey/blue (calming for me apparently) and when you walk in it’s wide open. There’s not too much furniture and not all of it is against the wall. The ceiling lights aren’t too bright and there is in fact a leather black sofa that isn’t too bad for comfort. The floors aren’t the typical clinical floors (generic carpet/wood floors). They’re like the wood floors but have grey paneling. There are bright ceiling lights but they seem to be filtered in some way so it feels softer. The exam rooms are pretty much the same. I don’t know what it is. I can’t place it but it all works. Now that doesn’t mean I want to stay there for a long period of time and hang out but at least I’m more at ease when I’m there.

I have come up with ideas in the past like how about having a separate room like a cafe/library-type room that’s off to the side and it has glass doors so the staff can see inside and get access to whom they need and the patient gets a choice of a few different drinks or at least a cold bottle of water and perhaps a fruit snack (if we get really fancy we could have the server in this cafe/library know what the patient can and can’t eat and drink) or some kind of health treat with some soft music ambience and perhaps a few books to read. Hey, you could even bring a friend and spend some time with them. And when visiting with that friend, the glass doors could serve as a sound buffer and not interfere directly with the actual doctor’s office. If you’re like me, you spend sooooo much of your personal time at the doctor and what a great opportunity to maybe even enjoy/distract yourself a bit while you wait? Because let’s face it, waiting for a doctor is the pits. Visiting friends is probably not the pits and you can finally go in to see your doctor feeling refreshed.

And then there’s the exam room. You know, the room they put you in because they don’t want to overflow the waiting room with unhappy people and then you wait some more. Well that room had better have a window, I tell ya. And if there is a window, I certainly hope there’s a view of some sort. If there isn’t, please have a scenic picture (and not generic) on the wall at least. We all really don’t want to have to look at all the clinical stuff off to the side the medical peeps use when in the rooms with their patients and that includes the sinks and tissues. And by then the magazines are useless. Yeah, we might have brought a book or have our phones to look at, but they get old too. And it would be so cool if the walls were painted different colors. My favorite doctors have had exam rooms that are actually painted different colors. Can you imagine exam rooms that are purple? I’ve been to a couple. Pretty neat. I mean, if we have to sit on that darn uncomfortable exam table with the crinkly white paper on it we need to have something pleasant to look at.

I could go on and on but you have the idea. I don’t like going to the doctor. I don’t like being at the doctor and I certainly don’t like being unhealthy so anything to help me feel better is a good thing. Yes, I take this personally. I am not just a THING to move around and be poked and prodded, I am a person and just adding a few personal touches to the surroundings I have to be in when I’m uncomfortable would make a world of difference. I already have white coat syndrome. I don’t need to have white wall syndrome too.

Hey maybe that’s my next career! I can see it now:

NAHLEEN BLAKE: Interior Decorator Specializing in Doctor’s Offices Near 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!

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!

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!!