Posts Tagged With: lupus

Happy Halloween and Health Update!

Posted on October 31, 2012 by Nahleen

Happy Halloween!  Hope you’re enjoying the day!  Let the Holidays Begin!

Hi there.  Feels like I’ve been off the Blog Radar for a really long time!

How are all of you?

I have had quite a struggle lately with my health.  I’m currently on what is becoming a long journey to find out what is bothering my digestive system so much.  It is a difficult and draining path right now as I call my doctors and ask for their input, continue to feel intense yuckiness, see new doctors as quickly as possible, try to live my life, take care of Disability Business, take care of life business, take care of other medical business, try to take care of my MS AND LUPUS, have some fun perhaps, spend time with my husband, Corey and my Cleo Kitty and do what I need to do for mental health and stability.  Exhausting.

It is definitely really hard right now but I have hope that with this big group of medical supporters, I will find answers.  I feel like a coin that can flip any time from “full of hope” on one side to “full of dread” without even a second passing.  Right now it feels like I’ll never get answers but I know it’s because when I have discomfort in my torso, that is all I can even manage to process in my mind.  It is the center of my body, the center of my Being.

And so I’m burned out.  I’m discouraged.  I’m frustrated.  I’m grieving the whole health situation I have found myself in.  I’m also hopeful, I feel loved, I feel very supported by all of you, I feel resolved to get answers and there’s even some faith mixed in there.  I don’t like the other “negative” choices of how to deal, so I’m gonna have to choose to keep on keepin’ on and with any luck I’ll find some answers and start to feel better.

I want my life back.

I AM DETERMINED TO GET IT!

 

 

Categories: Uncategorized | Tags: , , , , , , , | 4 Comments

STUPID INFECTIONS!

Posted on October 23, 2012 by Nahleen

TODAY I’M FRUSTRATED!

I have had enough of feeling sick!  I’m so done!  Too bad my body isn’t!

Yesterday evening my digestive issues started up AGAIN!  They had calmed down and things were ALMOST good for about 4 days…THEN BOOM!  I’m doubled over and having stomach cramps really bad AGAIN.  AGAIN!  To be honest, I didn’t think I was out of the woods yet with this small intestine bacterial infection.  My doctor had mentioned it would take awhile and that I’d probably continue to have some bad waves.  But he had told me to take the antibiotics for as long as needed so that I could go through the whole process of feeling really sick and nauseated and wait it out to the other side.  Then he said to wait a couple of days after I started feeling good and then I could stop taking it…

WELL I WAITED FOUR DAYS…just to be SURE.  That’s what I get for taking care of me right?  I mean, the 4th day started and I really thought I was doing well yesterday.  BUT THEN 6pm HIT me like a bomb and I haven’t been feeling well since.  I thought perhaps it had passed by this morning…BUT SLOWLY the stomach cramps started again and I started feeling bloated and nauseous…

UGH!!!!!!!!  GRRRRR!!!!!  I NEED TO FIND MY HULK HANDS AND PUNCH WALLS!

(Disclaimer: No hands will be punching walls on their own…must have lots of cushion…)

So I muttered and grumbled about it this morning and couldn’t help but be angry.  I’M TRYING TO LIVE MY LIFE HERE!  Trying to get back into the swing of things AGAIN!  The stomach discomfort can be so paralyzing and disabling I can hardly do ANYTHING when it happens and I’m usually a mess after the wave passes–IF it passes.

Soooooo, I called the doctor like a good proactive patient even though I resented it the entire time.  He called me back a few hours later and told me that what I’m going through what sounds like a classic small intestine bacterial infection reaction to the treatment itself.  That the good news is that it sounds like the MAIN infection has been killed BUT that there are pockets in the intestines where the bacteria can hide and that they’ve come out and are free since the first layer of crud is gone and the antibiotics are now KILLING these furious LITTLE CHOMPERS and are not letting them hide and sneak around anymore!  At first he was going to have me keep taking the antibiotics twice a day till this passed but I was honest and I told him this was day 18 and I was really irritated and my body was quite uncomfortable from the forced and prolonged detox.  He listened to that, seemed to change his mind and said that I should take the antibiotic twice a day for the next 2 days so that I will have taken it for 20 days in a row with this round.  The next step will be to start a MAINTENANCE regimen and only take it once a day twice a week on Monday and Thursday for a month or two to make sure there’s no more new growth for awhile…  I’m pretty sure I’ve done this before and it has worked out really well…HOWEVER it also means I’m going to continue to have these really bad waves while feeling “almost good” the other times…Sooooo, there will continue to be NO status quo JUST YET–if that’s EVEN possible for me.  Once the maintenance round is done then I start on Probiotics to help maintain even MORE digestive health.

Well OK then.  FINE.  So glad that the antibiotic is still killing and working as necessary BUT what about me?  It affects ME.  It makes me have to STOP everything.  It makes me feel AWFUL as it’s all happening.  I’m the one who has to PAY FOR IT.

SOOOOOOO FRUSTRATING….

I know this will also pass.  I know that being so committed and determined to do what I can to kill this infection is what will help the most in the long run.  IT DOESN’T MEAN IT WILL BE EASY!!!

STUPID INFECTIONS!

*******

I’m also trying to remember to keep in mind that I also saw my Rheumatologist today for a follow-up regarding my lupus.  The GREAT NEWS is that she thinks the lupus has really calmed down quite a bit and that more and more of the disease seems to have gone into a bit of remission.  Sure I’m having some symptoms that are flaring up but overall I’m doing a lot better…

YES THAT ROCKS!!!!

And it seems like my MS has also calmed down quite a bit so that’s also AWESOME!

NOW ABOUT THIS INFECTION–GO AWAY!  I’M BUSY TRYING TO LIVE MY LIFE!

 

 

Categories: Uncategorized | Tags: , , , , , | 1 Comment

Looking For People Who Have Both Multiple Sclerosis and Lupus

Posted on October 15, 2012 by Nahleen

I’m on the Search.

I’m ready to have more people in my life again. For awhile, I had to really stay extra focused on a small group because it is actually tiring to deal with people, even though one of my biggest passions is connecting with others.

I’m looking to expand my community. My first mission is to find people to connect with on my Blog. I really get so much from all of you. My next mission is to find people who have chronic illness. It really helps to connect with people who are going through similar circumstances. I have had the privilege of connecting with people with chronic diseases already and it has helped immensely. I continue to look forward to finding people dealing with them. I’d also like to dig a little deeper and continue to connect with people who have either multiple sclerosis and lupus. Everyone I have connected with with those specific diseases has helped me in such powerful ways and I thank you all for that. This next part of my mission seems to be the most challenging.

**I’m looking for people who are experiencing both multiple sclerosis and lupus at the same time.**

I have a real need to connect and relate with people lately. I, myself, have been in support groups in the past and am currently a part of a spiritual support group that has had a profound effect on my overall wellbeing and I am forever grateful for that.

I used to be scared to find people who had similar issues because either I didn’t want to admit the truth to myself, I didn’t want to suddenly take on their unique issues, just wasn’t ready to express myself yet or felt like I couldn’t and that it all had to be kept a secret. I have learned over the years that it is a truly powerful experience to connect with others who have similarities with feelings and experiences.

I am really looking for that now. I have yet to find someone who has both MS and lupus and I know these people exist. I have read about them all over the internet, I have heard about them from my doctors but I want to talk to them directly. Oh and I left out one other part of my mission of human connection. I also want to connect with people who have more than one chronic illness. There seems to be a whole other section of issues and similarities with those who have multiple confusing diseases that they are trying to juggle at once.

So please, if you are someone who wants to connect, feel free to comment on my Blogs or email me from a link on my “About Me” Page. If you are someone who has any of these specific layers of human connection please feel free to do the same. I’d love to have a dialogue with you of some sort. And…if you are someone with both lupus and MS–someone like me–I highly look forward to connecting with you in some way. I think I have the case of needing to fill in the blanks and find more of an identity. One of my biggest confusions is deciphering between which symptom belongs to which disease such as fatigue, pain, stiffness, brain fog, etc. It drives me crazy!

That’s what’s been on my mind lately.

I hope this finds you all well and that we can connect soon.

That seems to be the theme. CONNECT CONNECT CONNECT.

Categories: Uncategorized | Tags: , , , , , , , , | 4 Comments

CHRONIC DISRUPTION

Posted on October 9, 2012 by Nahleen

CHRONIC DISRUPTIONS

That’s what I consider my chronic illnesses: multiple sclerosis and lupus.

I have decided I need to just call them that.

CHRONIC DISRUPTIONS.

Someone had used that “DISRUPT’ word to describe them to me just recently and it really stuck.  YES.  If anything, they DISRUPT my life and they don’t go away. hence the idea of CHRONIC.  I’d like to say I’m perfect at being able to ignore them or at least NOT EVER let them get to me.  But that would be a LIE.  IF ONLY…

I tend to try to go on with my life (you know: get up in the morning, eat 3 meals a day, brush my teeth, comb my hair, shower, socialize a bit more, do some errands, exercise…things like that) especially as I start to feel better or get some relief and then BOOM!; I’m HIT with the next BIG BANG BAD SYMPTOM or ROUND OF SYMPTOMS.  Not that I ever stop feeling symptoms like fatigue, pain, stiffness, nausea–you name it.  There’s always something going on.  Some are more tolerable than others and there are loads of levels of degrees of the intensity of the discomfort.  It’s different all the time.

And all of it is  COMPLETELY AND UTTERLY UNPREDICTABLE.

With this unpredictability comes the DISRUPTION.  The diseases don’t work out a deal with me about when they are going to start flaring up.  They don’t let me plan my day.  They don’t care if I’m out to dinner with a friend or grocery shopping.  They just HAPPEN.

And that to me is by far the BIGGEST FRUSTRATION.  They are so DISRUPTIVE.  The amount of patience and flexibility I have to have would make me a Super Hero for goodness sakes.  Sooo, I just do the best I can with what I have and what I can do at that moment.  And I also throw temper tantrums, have tons of feelings about it and try not to punch walls.

Most often I just have to stop EVERYTHING.

“YEAH BUT” goes through my head all the time.  “Yeah but I need to make breakfast” or “Yeah but I need to get dressed” or even “Yeah but I need to brush my teeth”.  It doesn’t feel like a PAUSE.  It feels like a STOP.

The DISRUPTION causes an INTERRUPTION in my flow.  What am I talking about?  I have no ability to really Flow.  I have wanted a ROUTINE for years and it FINALLY just occurred to me that I need to give up that idea altogether.  I really just need to know what my Priorities are for me that day, try my best to do those for the day and then IF I can add something else than I will.  Laundry and grocery shopping seem to be the most DISRUPTED.  They take a lot of energy out of me that I either don’t have or I’d like to hold onto for the day.  I don’t like running on EMPTY if I can help it but then again, I CAN’T CONTROL THAT.  There is usually NO WARNING.

I’M CURRENTLY DEALING WITH A DISRUPTION OF DIGESTIVE SORTS.  I believe about a month ago I had mentioned on this Blog that I was fighting a small intestine bacterial infection and was on strong antibiotics for it.  I took the 2 week round of treatment, felt crappy from it (as was expected since it’s a detox) and thought I was done.  I had done this before and towards the end a lot of me was starting to feel much better.  I did HOWEVER feel nauseous towards the end of the treatment and thought it was side effects from the antibiotics.

Come to find out, I SHOULDN’T have stopped taking the antibiotics at that point because feeling NAUSEOUS meant that the treatment was starting to ACTUALLY FIGHT the infection.  That’s what my doctor reminded me of this past Friday after I called him because I had SUFFERED horrible stomach cramps AGAIN.  He said the goal is to be NAUSEOUS.  (I don’t know about you but that’s usually not on my favorite list of GOALS…).  When I’m NAUSEOUS it means I’m starting to actually fight the infection and I need to try to deal with and wait it out.  Once I stop feeling NAUSEOUS, then I will be able to start feeling better.  Once I’m consistently feeling better with no NAUSEA pangs then I can stop taking the antibiotics…

WELL GREAT.  INSERT/SHOVE NEWEST DISRUPTION HERE.

So that’s what I’ve been going through.  The past few days I’ve actually felt nauseous so at least now I know the treatment is working.  And with nausea, comes less energy and the inability to focus, loss of appetite and things like that.  We all know the drill I bet.

AND I just want to point out that it’s not like the body is PROGRAMMED to only accept one DISRUPTION at a time.  Ha!  If only.  I can dream I guess…The reality is that I still have all the other symptoms from both diseases that pop up whenever they seem to want to…

TALK ABOUT OVERWHELMING!!!

I suppose I better stop writing now because I’m starting to feel extra yucky again.  One positive I want to point out is that my lupus and MS seem to be calming down a bit and to be a bit less of an issue these days so there is recovery.  Thank goodness.

ALL OF THEM SCREAMING AT ONCE WOULD DRIVE ME ABSOLUTELY OUT OF MY MIND!  Let’s hope that doesn’t happen…

Categories: Uncategorized | Tags: , , , , , , , , , , | Leave a comment

Dreaming of a Non-Boiling Fall Season…

Posted on October 1, 2012 by Nahleen

It’s fr*&^%$#@! 95 degrees in West Los Angeles (over 100 degrees in the Valley) today (October 1st) and I find myself daydreaming about the Fall Season in New England where I spent my first 22 years…

Sure it’s actually quite typical for October to be really crazy hot in Southern California. Hence, the idea of fire season. This is usually the month when the fires can get really bad out here. The vegetation HAS HAD ENOUGH. And so have the people. It’s a wonder the people don’t melt and boil as well. The best part about the temperature is that the sun goes down earlier and it USUALLY (I feel like I’m jinxing us all in LA) cools off pretty well at night. USUALLY.

But the biggest tease these days is the Internet and the access to all these social sites where those in cooler climates are praising the Fall Season and how “lovely” it all is. I find myself drooling all over the wonderful pictures of the colorful foliage and wanting to jump in the pictures to get just a taste of it. I wish I had appreciated it more when I was there for 22 years. Funny how that works…

So while I sit here in my apartment with the AC at full blast so that my MS doesn’t go completely crazy on me (been feeling the heat quite a bit today even with the AC) and the blinds closed so I can live in a cool dark cave so that my lupus doesn’t go wacky on me (joints are hurting), I thought I’d come up with this list and fantasize away. We were back in New Hampshire/Massachusetts a year ago at this time and it was wonderful. I really thoroughly enjoyed myself and was feeling quite bouncy. I even found myself frolicking in the colorful forest. I was completely invigorated!

So here’s my Fall Daydream Drool List:
*colorful leaves
*dark red leaves
*lighter red leaves
*yellow leaves–almost golden
*orange leaves
*orangey/red leaves
*half-colored leaves still changing
*even the green leaves that have yet to change
*the breeze through the leaves
*watching the leaves fall from the trees
*the crisp cooler temperatures
*breathing in the fresh cool air
*wearing snuggly clothes
*cooler chilly temperatures but it’s not too cold and freezing
*hot cocoa
*hot coffee–pumpkin flavored coffee and other fall yummy flavors
*hot tea
*hot apple cider
*the steam rising from the hot cups of yumminess
*pumpkins of all shapes and sizes–not melting like they would out here on my balcony right now
*gourds of all shapes and sizes
*decorative corn
*special jams and jellies
*mums
*maple syrup
*maple candy
*maple donuts
*picking apples
*cider donuts
*pumpkin french toast
*pumpkin pancakes
*pumpkin baked yumminess
*cinnamon everything
*the way the sun light shines through the trees and the colorful fall foliage
*scenic drives to see the fall foliage
*lots of hills to drive through
*exploring the countryside looking at the fall foliage
*my eyes watering from looking at the deep vibrant colors
*country stores
*caramel apples
*caramel yumminess in general
*scarecrows
*Halloween decorations
*Halloween festivities
*FROLICKING through the fall foliage wherever I am
*sometimes even when it’s raining in the fall
*the bright clear days and the blue blue sky
*the sunsets–although we do get some pretty good fall sunsets here in LA too
*hayrides
*yummy fall smelling candles–yeah sure I can get them here but there’s something about burning them when it’s not HOT
*NOT having to turn the AC on
*sweaters
*scarves
*sitting and watching the leaves blow in the wind
*lakes surrounded by beautiful fall foliage
*a big field surrounded by beautiful fall foliage
*baking baking baking
*the festive feeling in the air
*the wood stove smell
*all of the wonderful FAIRS!
*eating too much yumminess at the Fairs
*bread bowl soups
*seeing my breath as I breathe outside
*the fall colors in general

And I could go on and on. I know I’m missing A LOT of stuff. Do you want to add anything? Please feel free to do so. I’d love to see what you have to share. And if you have any fall pictures you want to share, please please please post them here! I’d love to see them. I can’t get enough!

Categories: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 4 Comments

125 BLOG POSTS!

Posted on September 28, 2012 by Nahleen

Oh my goodness! I have hit the 125 Blog post mark!!!!!!

So cool. I couldn’t have done it without you so thank you!

It’s been a roller coaster week and I’m currently in a symptom flare (MS and lupus are FUN–NOT!) so I will try to stay positive (which I’m hoping will help me). I wanted to take a moment and thank you all for being here with me on this writing journey. I have always felt like a writer ever since I was very young and I have really struggled with it. In 5th grade I wrote a children’s holiday story and my teacher liked it so much that she tried to work with me to expand on it a bit and add a few more details (you know, to improve it) so that she’d feel comfortable trying to get it published in a children’s magazine (or something of the sort–what I heard was published) but I think I took her criticism so personally that I blocked her and it off and refused to change the story AT ALL because I liked it the way it was. And soooo, the story was not published. That blocked me and disappointed me for a few years. I still have the story and am hoping to feel willing to expand on it now after all these years.

Then I started writing more in middle school and either I didn’t want anyone to read it and kept it to myself or what I wrote was crazy serious deep (hello puberty) and my teachers asked for lighter stories. And then as a junior in high school I seemed to really blossom as a writer and all of my teachers highly encouraged me and told me they really thought I’d get somewhere with it and to keep expanding on it. Well, I expanded on it and that all really went well.

AND THEN in college I took one writing class and the professor was “not impressed” with my writing and told me I wrote too much and wanted me to get to the point. So here I was completely confused because one school of thought told me to expand and the other wanted me to cut it down. At that point I shut down writing. I may not have had I not been going into the high maintenance field television production that took up most of my time and focus. Production also helped me learn how to express myself in a very different creative way. I had to show you, not write it for you to experience. So, I veered off the writing path and took quite a journey into production.

Yet, there was always this deep soulful need to write. It was in me. It had to come out. But then I thought I had to be perfect. FEAR started to run me and it just never really worked. When I was first diagnosed with multiple sclerosis almost 10 years ago, I had people from different parts of my life who had nothing to do with each other telling me to write my story because of how I express myself. They told me I had a story to tell. They told me that I could really help others and probably myself. That it’s important to let others know what really happens with chronic illness.

And I tried, I really did. I tried too hard. I started up this Blog in 2009 and I think I wrote only 3 posts. Actually, I think I still have them posted if you want to check them out. Reading them now I know I still wasn’t ready. The real me wasn’t really coming out. I felt raw and vulnerable.

Meanwhile, people still said that I needed to tell my story. That I could really help. And that writer in me wrestled with my ego until it finally BURST OUT in March of this year. It has been over 6 months and I have no plans to stop. I had no idea where this journey would take me. I still have so much more to write.

Thank you to those of you who have commented on my posts, encouraged me, read the serious ones, read the long ones, read the silly ones, put up with the ’80s and partied with me, have gone on my doctor appointments with me, have shared my Moments of Peace with me, have felt MS and lupus with me, have read my complaints, have read my hope, and who are teaching me about me. You all play a part in who I am and for that I am truly grateful.

Please feel free to comment any time about any post (I would love to hear from you), to Follow my Blog, to share my Blog with others, to email me in private (you can find a link to my email on the “About Me” page), to friend me on Facebook (Nahleen Blake), to follow me on Twitter (nahleenblake), and connect in general. Oh and by the way, I’m thinking of starting up my own Facebook page where I’m hoping to share my favorite quotes, pictures, silliness, fun, stuff about me, stuff about you if you want, music, anecdotes of life, Blog posts, etc. Keep an eye out for that update soon. More to come!

And thank you all for being you. You help me to be me. And that soul writer in me is FINALLY starting to feel satisfied. I look forward to more of this journey. It has been truly amazing!

Categories: Uncategorized | Tags: , , , , , , , , , , , , , , , | Leave a comment

Unpredictability is the Worst!

Posted on September 27, 2012 by Nahleen

Lupus.

Multiple sclerosis.

‘Nuff said.

Categories: Uncategorized | Tags: , , | Leave a comment

150 DAYS OF WALKING!

Posted on September 24, 2012 by Nahleen

WOW! I have walked every day for 150 days!

AMAZING! I would never have guessed that I could do that before Physical Therapy almost 5 months ago. NEVER. And how does that saying go? “Never say never.”

Hey, if that’s true, I’ll say I’ll never lose the weight I want to lose ever. Do you think that’ll work? So I’ll be losing weight from now on right? Ha! If only. But you never know.

I am so proud of myself. I think it’s really paying off. I make it a point to take a walk. It may be 5 minutes or 30 minutes. It all depends on what I’m doing. It may be outside, inside, a walking dance meditation or I march in place. The point is, I’m doing it. That’s almost 5 months of moving my legs.

How cool is that? I have multiple sclerosis and lupus and I have been walking EVERY DAY now for months. I have walked even during this crazy hot summer, through hard times, better times, illnesses and you name it. I have WALKED.

One day at a time!

And I don’t plan on taking a day off from walking any day soon…

Categories: Uncategorized | Tags: , , , , , , | 6 Comments

Picking Up the Pieces

Posted on September 17, 2012 by Nahleen

Oh my goodness. What a weekend it was! I am so relieved to get through it.

On Saturday, it was 104 degrees here in West Los Angeles, CA! Crazy ridiculousness! Thank goodness the AC was working. However, it was still hot in the apartment if you ask my MS and lupus. OH yes it was. Yet, at the same time, somehow I got out with Corey to run some errands. I needed to get away from the building. Like in a car get away. I hadn’t been in a car to go anywhere in over a week and my little visits to the sun deck and my walks around the block just weren’t cutting it. Nope. So for sanity’s sake I got out and it was good to do so even though my body was yelling at me.

On Sunday, it was a bit cooler but still too darn hot. And it was an awful day because our Cleo Kitty (who’s been doing quite well since her cancer diagnosis in December 2011) was very very sick and we really weren’t sure what was going on. We think it was a bad reaction to medication but we’re really not sure. It was one of the hardest days I’ve had in a really long time. And the GREAT news today (Monday) is that she’s doing much better and almost seems like herself again. She didn’t eat for 24 hours. Very scary…when she did finally eat a little bit it was so exciting!

Meanwhile, I’ve still been fighting this small intestine bacterial infection. So while it was so hot and then Cleo was sick, my stomach was churning at times. The good news is that the infection seems to be getting better and I’m functioning more in my life. Today I stopped taking 1 of the 2 antibiotics I was on to treat it so hopefully that helps a bit to clear my head. I tend to feel a bit woozy on them.

So needless to say, we’re trying to settle back into a norm here. Thankfully it isn’t AS HOT here and Cleo’s recovering. I feel so blessed and grateful that we are given the gift of more time with our little girl. She is truly very special and definitely a fighter.

And as much as I feel like I SHOULD BE hitting the ground running, there will be no such thing today. I have a few more things that need to be done, one errand to do which will help me get out and otherwise it’s resting with Cleo.

Gotta give myself room to pick up the pieces and recover in all areas. Most of it can wait.

Categories: Uncategorized | Tags: , , , , , , , | Leave a comment

Hope

Posted on September 14, 2012 by Nahleen

I have hope.

And it’s in the forefront of my mind, not somewhere in the back being pushed aside by yuckiness.

It’s been a really hard week for me. I’ve been dealing with this small intestine bacterial infection and the antibiotics that are sent there to go to war with it. It’s so not fun when there is a war in my digestive system. Talk about feeling messed up!

And then for it to be hot, humid, have lupus and multiple sclerosis on top of it!

UGH!!!!!!–And that doesn’t even come close to explaining it.

So this morning I woke up with hope. I could feel that it had somehow made its way closer to the front of my mind again. I am feeling a bit better. I feel like I’ve turned that corner and can glimpse the “feeling better” part of it all.

The yuckiness has been coming in waves…so for the moment I’ll do my best to be content with where I am.

I’ll sit with my hope and see what happens.

Thank you all for being there. It helps a lot.

Categories: Uncategorized | Tags: , , , , , , | 2 Comments

Blog at WordPress.com.

Design a site like this with WordPress.com
Get started