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WALKING AND WALKING AND WALKING

That’s me. I’m a walker.

I feel blessed to have two functioning legs that let me walk and will hopefully continue to do so.

AND thanks to Physical Therapy, a past of walking as a hobby, my journey of self care and my stubbornness:

I HAVE WALKED EVERY DAY FOR 125 DAYS!

Crazy. Can’t even believe it! I couldn’t have done it in the past. I definitely can’t plan to walk anymore days than this because when I PLAN it’s suddenly too hard and overwhelming. I would put sooooo much pressure on myself to do it and it wouldn’t happen. I also can’t tell myself how long I have to walk OR that I can only walk outside.

The trick is to take it one step at a time, one day at a time. I have walked EVEN when it’s been hot, sunny, I’ve been sick with infections, I’ve felt crappy–you name it. I still walk. I have to be creative too. I have a walking video I use inside my home. I have a walk that I do around the apartment (boy does that get old but it gets the job done). I have a walking/dancing meditation I do especially when I need to get frustration and extra pent up energy out. When I’m out at doctor appointments, I’ll make sure to take a walk around that area and around a block or two; or to a lunch spot. And of course I still take walks outside anyway. But I gotta change it up.

I WALK.

And my legs thank me for it. My body feels stronger. I’m able to stand in one place for longer periods of time. I’m able to get out a bit more and live my life. Those far away parking spaces don’t seem as far away anymore. The walk through the grocery store isn’t so tiring.

By taking off the pressure I am able to keep going. It’s not always so easy to take off the pressure and have expectations. I find I do EXPECT to walk every day and there have been a few days I’ve heavily considered taking a break and I get upset that I might miss a day. BUT then I find myself walking.

How many more days in a row can I keep on walking?

I’ll letcha know. For now I’m thrilled that I’ve made it over 4 months–

WALKING AND WALKING AND WALKING…

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Cheesecake Pie Yumminess!

Last Friday I was looking for creative projects to do for my sanity and I decided I was FINALLY up to whipping up this Cheesecake Pie!

Came out pretty darn good!

 

As someone with multiple sclerosis and lupus, I’m always looking for creative ways to express myself because otherwise I’d explode into little pieces and no one would like to have to clean that up.  Soooo, one of the ways I do that is to bake and make yummy desserts.  And since it’s summer and intensely hot and sunny I really can only handle making desserts that don’t require baking.  I whipped up this cheesecake pie thanks to an already made graham cracker crust, lactose free milk and a Jello Cheesecake mix.  I got out my mixer and mixed away.  I think I need to come up with more things to mix because I really enjoy doing it!

Anyway, as I mentioned before, I used lactose free milk and that’s because I found out I’m quite sensitive to dairy.  I have also used soy milk in the past and think I will again next time.  It still comes out with a great consistency and I think it tastes better!  I have also been known to put chocolate chips in the cheesecake part and on top.  I highly recommend doing so.  It adds an even yummier flare!

So there you go!  It was nice to be able to make something and use my hands.  Perhaps soon I’ll actually feel up to making a REAL cheesecake.  Hmmm….

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2 YEARS AND 2 DAYS!

I have survived 2 years and 2 days with a lupus diagnosis!

Go me!

2 years ago when I was diagnosed, I felt symptoms that had to have been traumatically horrible and unfathomable because I have blocked out those physical sensations. When I look back on those 1st few days with a new label of a lupus diagnosis, I can’t really remember how I felt physically–not really.<em. I just know it was horrible because of how I felt mentally. I know the basic symptoms I had BUT there's a block there and that's OK with me. I'd rather not relive those awful symptoms and to that intensity EVER again. Sure I still feel most of those symptoms and perhaps some more but with changing my outlook about ME, treatment, proactive doctors, and people like you it's less intense.

As hard as it has been to have multiple sclerosis and then to add on lupus, I am truly grateful for my path of recovery. I have trudged and I have struggled and I am losing it these days due to the intense sunshine and heat, BUT my path is crowded and yet more peaceful. It is crowded with so many people who have been there with me and for me through all of it. Words can't describe how touched I am that I am NOT going through this ALONE. It is so easy to isolate with chronic illness AND YET you never let me–even when I might want to.

I often feel overwhelmed by all of the hard work it takes to handle medical business (insurance, bills, doctors, medications…), self care (rest, exercise, healthy eating, meditation, having fun, having a life, socializing, living for me…), a life that is currently on Disability (thank goodness for it but it drives me absolutely crazy–I highly recommend it if you need it BUT I will not sugarcoat it: IT IS A HARD BATTLE TO FIGHT–yet totally worth it), etc.

AND…

I also often feel wonderfully (please don't stop) overwhelmed by all of the love, support, encouragement, positivity, relationships and connecting, the hugs, the smiles, the prayers, the gifts, the willingness to be there for me for what I need. Tears are running down my face right now as I write this because I KNOW you are all here with me. I'm learning to accept it too. That can be hard. I can't do this on my own and it is so hard to ask for help BUT it has all been truly a gift. And to stop and smell the roses and look at the sky are truly wondrous to me. Heck even my PURPLE HAIR has helped me free myself! I DIDN'T HAVE ENOUGH TIME FOR THAT before. I wish I had MADE the time.

And so I leave you with this:

THANK YOU FOR BEING YOU BECAUSE YOU HELP ME BE ME!!

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Sicky Icky

Yep. I guess I don’t feel yucky enough and now I’m sick.

Not terrible sick. Been dealing with laryngitis since last Sunday and every time I think it’s cleared up it comes back. My Pulmonologist (yes I have one of those too) had told me awhile back to do a gargle with salt water and honey and it really helps a lot. BUT it wasn’t the answer to the issue. It just sorta soothed things.

So today I woke up and I felt OK. And then I started to feel really heavy and it felt like my body was crashing. It’s been a pretty intense week. I thought it was probably my body catching up with me. So I went back to bed to get some more sleep. When I woke up later I felt worse. You know, you go back to bed to try to get some more sleep to try to feel better right? Ha! This was one of those sucky times of waking up feeling worse.

This time I felt an overall feeling of yuck–I’ve since learned it’s malaise but what kind of word is that? It’s yuck. It’s bleh. Sick. My laryngitis had gotten lots worse and I felt heavy and gross. Then a bit of a cough started. I’ve learned a long time ago to address my cough immediately if I even get a slight hint of one starting. I can’t play the game and wait to see what happens. I KNOW WHAT HAPPENS…

And NOW my doctors all agree that I need to not only address it on my own (go figure) BUT I need to call them right away so they can help me take care of things. Amazing really that I have doctors that pay attention to this and are proactive. They DON’T want me getting sick–so sick that I can’t function even more. I have a tendency to go from slightly sick to HORRIBLE.

Soooo, even though I kept thinking in my head I could tough it out and do it on my own (been working out really great since Sunday as the no voice nonsense started), I dialed my doctor and found myself talking to someone on the other end right away.

And after waiting for hours for a response I did get a call back and ANTIBIOTICS it is. Good times. These have messed up my digestive system in the past so we’ll see what happens. My doctor told the nurse to tell me (don’t remember the exact words of course), “This is the deal. I understand she has stomach issues and she has a concern but we need to take care of this infection now. She can’t afford to get worse with her immune system the way it is. Tell her to take the Z-Pack and then call us and tell us how she’s doing. Tell her to promise she will. We know she has a tendency toward infections and it’s been awhile and we don’t need to be on a cycle of never ending infection if we can help it. But she has to PROMISE she’ll call me.” And she made me promise and I did like a good girl.

I really don’t need to be more sick. I addressed this early I think so hopefully it nips it in the bud. I decided I didn’t need to be coughing up a lung this time and to be completely miserable. But I’m sicky icky. I’m so tired of not feeling good. I’m so tired of all of this.

Yet somehow living in the solution helps a lot.

So I should probably go start the meds. Here I go. Wish me luck!!!

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A BIG OLE THANK YOU!!!

Thank You! Yes You!

You are reading this right now and I thank you. I wanted to send a little note along to you all and share my gratitude and appreciation for your support, encouragement, conversation, and anything else connected to a Blog that I know I’m missing.

(My head is not thinking straight. This heat is kicking my butt today. Mega slow motion…UGH.)

For years I was unsure anyone REALLY wanted to know my story. I mean, why me? There were lots of people who tried to tell me I had a story to tell and that people might want to read it. My thinking is that we all have a story to tell and I had this odd idea that since we all had a story to tell that mine wouldn’t be good enough or that you wouldn’t care. But you do care.

It finally clicked at the beginning of this year that it shouldn’t be about whether you all want to read or know my story but whether I want to share it. Then it became a NEED to share it because I was going to burst! I needed to get it out. There has been so much inside me for years…so much I needed to express. I used to write a lot when I was younger and I loved it. Then I lost site of it as I explored other creative paths (and because one college professor didn’t like my writing so woe is me I can’t write ANYMORE–dramatic I know) and built a wall to block my writing as high and tall as I could muster. I wanted to write about my diagnosis story with multiple sclerosis 10 years ago when I was first going through the traumatizing hell of trying to figure out what was wrong with me but I wasn’t ready. And yes, I think it took me nearly 10 years to take down that wall piece by piece.

And so March of this year was the time to TRY. Apparently I was READY. I couldn’t stop once I started. It was all starting to burst out the flood gates because now there was some freedom. It’s hard to get the crap out. It’s hard to be vulnerable and to tell the truth–to be personal and yet I’m learning it’s so important to get it out.

AND you have all been there with me. You responded to my Blog posts about MS, lupus, doctors, appointments, concerts, health, heat, people, ’80s, my moments of peace and the topics really are endless. You liked my posts on Facebook. Yes I’m on Facebook (I mean, who isn’t right?) as “Nahleen Blake”. My page is private so please send me a friend request and feel free to let me know who you are and how you found me. I love to converse on there with all kinds of people. It’s been great to catch up with old class mates from way back to new people and to hear your feedback about what I post and the messages/photos I post. I’m also on Twitter as “nahleenblake”. Feel free to follow me if you like. I would love it too if you responded to my Blogs and we opened up conversation. One of my favorite things is to connect with people. Please talk to me. I’ll be honest. It’s kinda weird putting myself out there to what feels like the “WHOLE WORLD”. You can also send me an email and there’s a link to my email on my “About” page.

THANK YOU. (And Corey–thank you with all my heart. You are my biggest support of all. You have coached me and loved me the whole way through. That means so much to me.)

You are ALL helping me to BE ME.

That matters most.

P.S. Anyone know of a human-sized refrigerator I can go in now to cool off so my MS doesn’t act up anymore in this heat????

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101

GO ME GO!

I HAVE WALKED 101 DAYS IN A ROW!

That’s so cool. Thank goodness I had a Physical Therapist a couple of months ago who I really clicked with. She encouraged me to “Keep On Keepin’ On” no matter what. She told me the most important advice she could give me is to walk–even just a little bit–every day. Yes, EVERY DAY.

She pointed out that with lupus and multiple sclerosis WALKING is the BEST thing I can do for me. Even just a few minutes every day will help. The point is the repetition with my muscles and with my body in general. Pretty soon my mind and body will be programmed to make it a habit and it will all work out. Otherwise, the muscles are encouraged to stiffen up and in turn I will not have the flexibility, strength, stamina or endurance and it will continue that way. She understood both illnesses well enough to tell me that she knew there were days I felt like walking WAS NOT A GOOD IDEA. It kinda did feel like she was reading my mind. Perhaps I’m too tired or have too much going on or my legs just hurt so the red flag goes off in my head that I BETTER NOT WALK TODAY AND JUST LET MY LEGS REST. BUT the point is to WALK.

She also made it a point not to bite off more than I could chew right away–that it was really okay to ease myself into it and to even do a few minutes if that’s all I could do. There was no need to push too hard or walk for an hour every day or to walk too much all at once. It’s cumulative. The body will remember, the muscles and nerves will remember. Sure it might be hard at first to mentally be committed and my legs might yell at me for using them “too much” but to keep at it. Take it easy. WALK. No judging of myself.

WALK.

So while I was still in treatment with her I attempted this idea called “WALK”. Sure I did too much at first and walked too much and wore myself out. Of course I did. I’m me. She pointed out that as humans we are all programmed to think we have to take it all on. She’s worked with pretty healthy people too who also bite off jump in right away and wonder why they can’t walk the next day or a week later.

ONE STEP AT A TIME.

So that’s what I’ve been doing and it’s worked. And I can say that it has finally clicked in. I’ve heard over the years that someone with MS (specifically) should try to exercise every day and do something–whatever that is–and that walking was a great idea.

IF I CAN WALK AND HAVE THAT PRIVILEGE THEN TO WALK IS A PRIORITY…

I do have to change it up a bit. I have a fitness walking video I use at a home, sometimes I do a dance walk type thing–hey maybe I can patent it is the Nahleen Dance Walk, I walk around the apartment (so boring but gets the job done), I walk outside, I walk where I have errands, I walk the mall, I walk a park, I walk in a museum, I walk before or after a doctor appointment.

By now I know you get the point.

I WALK.

And the payoff is really great. Not only do I know I benefit from stretching every day (been doing this for years–thank goodness), BUT now I walk every day. I have always loved to walk outside. It helps to relax me to see nature with the sky and flowers and birds–you name it. There’s even some fresh air to breathe. It’s lovely. So this is all really good for me to add it to my daily routine. I’ve noticed my legs ache and are less stiff, my joints don’t hurt as much, my legs are stronger, I have more endurance and can walk more distances and a lot of times it’s not my legs that bother me much–it’s the rest of my body.

I’m so so glad I listened to this very special woman. She has really changed my life.

ONE STEP, ONE WALK AT A TIME…

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Detachable Limbs

I woke up this morning with heavy limbs and achy joints. Not a fun combination.

Wouldn’t it be so cool to have detachable limbs? I’m not talking about the prosthetic limbs although those are totally awesome! Thank goodness for those. But what if we had bodies with limbs that were able to detach? We really could be the only ones who could detach our own limbs as needed. The idea would be to let these limbs rest themselves and get rejuvenated.

That’s what I wanted this morning. I have found myself fantasizing about these things because I have learned over the years that I need to love my body no matter what is happening and not hate it for not being “perfect”. This is the body I have. That means I can’t run away from my body, be mean to it and beat it up for not feeling well. It’s just trying to be a body.

So what else could be done to help it? Well, the detachable limb idea comes to mind. I really wanted to be able to detach my arms and legs and put them aside to rest and recover for the day, this morning. Sure I’d be just a torso and that sounds creepy but the idea would also be that my torso would be incredibly capable on its own (okay, now I’m kinda freaking myself out with this idea) OR how about having prosthetic limbs for even these specific times when the actual human limbs really just need some down time?

So on that note, I’m glad I could write something tonight. I did rest my whole body today (having to cancel a date with a friend–dang it) and it did help. If it didn’t help then I wouldn’t be able to type this so easily.

Which then reminds me that I really need to learn the audio to text software a good friend (who is one of my followers–so sorry to reveal this to you right now) was so gracious to send me. BUT anyway, sounds like a project to do this weekend. Soon for sure. Then again, I also need to rest my mind when my body isn’t feeling well because if my mind is tired my body usually is too. So it was probably best I didn’t write a blog in any way today until this evening.

ANYWAY, about those Detachable Limbs…sure would be nice to have them. But since I don’t I will have to deal and rest my whole body when it asks me to. I am getting better at that.

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OK OK

I woke up this morning and my body was begging me for REST!! OK OK. I get it. For now anyway. I’ll do my best to rest today.

I’m also gonna follow these unwritten prescriptions (although if they were in writing I might take them more seriously) that both specialists have given me in the past week.

1. Don’t be so hard on myself. I have MS and lupus. That is enough. That is MORE than enough.

2. Get more rest.

3. HAVE MORE FUN!!!

Alright. I’ll do my best. These really are the three main things I need to work on and I’m really pleased that my doctors picked up on that.

MORE FUN?! What’s that? I think I’m learning slowly…

And so, that’s what I’m doing today. Just wanted to pop in and say hello and put these 3 things in writing.

I guess they’re important…

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Proud of Myself.

I slept.

I’m still resting.

Feeling a bit more relaxed.

It’s working.

Gonna keep this up today.

Go me go!

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Taking Some Time to Just Be

I’m exhausted from the week. Sooooo, I’ll be postponing my Friday Moments of Peace Blog to another date. This week held many moments of peace that I’d like to share with you and I’m hoping to be able to do so next week. Yes, there were definite moments of peace this week despite what else I’ve been posting. I guess that’s life huh?

So I’m taking some rest time to JUST BE. My body and mind are thanking me. Thank you all for being there. I’m in a better place mentally than I was yesterday. It’s all the processing I guess.

Welcome to my new followers too! Yay! It helps so much to know I’m not alone.

Take care and have a great weekend!

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