Posts Tagged With: physical therapist

The “Cool Kids”…as if I know how they are…

I just wanted to be like the “‘Cool Kids” tonight. That’s all.

You know. The “Cool Kids”. The people who are doing stuff that is cool that I don’t get to do.

Right? Aren’t those the “Cool Kids”?

Well that’s what it feels like tonight. I did all my stretches and workouts today which is pretty darn good. I did everything I could do for me and for my health. And…


That NEW STRETCH has kicked my butt. Everything changed from that point. Even attempting this NEW STRETCH did me in. It was sooooo hard. I haven’t had to attempt such a hard stretch in a long time. Oh good. I’m glad I’m not putting the word “stretch” in capital letters anymore. It doesn’t deserve to have such Power over me. But it sure did take over my life today. Everything in my body changed at that point. I was able to keep exercising but I had to rest after trying to do the stretch and then start up again. My whole body was yelling at me. This is a new stretch given to me by my Chiropractor. I had tried to do this stretch last year with my Physical Therapist at the time and I couldn’t even get in the right position so we decided it wasn’t the “right” time to even TRY it. And now, the stretch is back to haunt me. At least I was able to get in the right position and I kinda pulled it off but it was one of the hardest things I’ve had to try in a long time.


I’m determined to conquer this stretch. I know it’s a good one. I know it affected my whole entire body. I’m gonna get it. I am. BUT not today.

So because of that stretch…and the fact that I have multiple sclerosis, lupus, irritable bowel syndrome and all kinds of other crappy issues that go with these three yuckies, I DON’T GET TO HANG OUT WITH THE “COOL KIDS” TONIGHT. (I know I know. Perhaps I’m the “Cool Kid” for staying home and resting and not pushing it too hard. Yeah whatever. Still not Cool. I’m not in the mood to look at the brighter side of things just yet. Sometimes I don’t want to make concessions.)

Corey has an Improv show tonight. Actually, it’s debuting tonight. Brand new and full of silly. I just know it. I love to see him up there. He looks so full of joy and really blooms on stage. Makes me happy to see him happy.


MS, lupus and IBS have reared their ugly heads…YET AGAIN.


They decide my night.


They stop me from getting out.


They interrupt my life.

And you know what? It’s not OK. Not tonight. I will deal. I will get some rest. Everything will happen even if I don’t get to go. I’m not as upset as I used to be about it but I’m definitely not happy either.





And it’s when I can’t do the FUN STUFF that’s the worst.

And time will happen. I’ll have another chance to see this new show next month again. Perhaps I’ll be able to go. Maybe I’ll even be able to hang out with the “Cool Kids” and be one of them.

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It’s time for a confession:

I haven’t written in awhile. It looks like it’s been over 2 months. The truth is, I’ve been watching my back. I’ve been keeping an eye on happenings around me. I’ve been looking over my shoulder even more. I feel like my last post revealed something illegal.

It feels ILLEGAL to say “I’m OK”.


To be honest, I have been waiting for the “OK Police” to track me down, to find me. Clearly if I have put in writing that “I’m OK” then I’ll be found out. How dare I have MS, lupus, IBS and all kinds of other issues and be OK? What am I thinking? Clearly then I should be working and living that “normal” life right?

I MUST be ready for a job. I MUST be ready to add that chaos back into my life. I MUST feel well enough to work.

Something happened in April of this year that I have yet to write about here because to be honest I’m still not ready to get into too many details. What I will say is that an entity who shall remain nameless stopped helping me financially and my legal counsel advised me that it was because by writing a Blog and being “able to write” then CLEARLY I can WORK.



Or maybe it is right? Well let’s see what I can do in the morning if I were to go to work right now? I can get up early in the morning, stretch my body in the bed before I even get up because due to my MS and lupus my body has stiffened through the night, I can try to do some spiritual routines to help me have hope to get through even the next hour, I can shower which ALWAYS feels like an EVENT, I can put on all the creams and do all the Dermatologist ordered regimens in order to protect myself against sun sensitivity due to my lupus, I can feed my Cleo Kitty, I can think through my fog-addled brain that includes a regular feeling of tired along with MS fog and lupus fog, I can make my breakfast, I can take all my vitamins and medications, I can pull together a lunch for the day, oh yeah and how could I forget putting on clothes which can wear me out, I can put my shoes on with hands that are probably achy and stiff due to MS and lupus, I can do my stretches that usually now take 2 hours to do that have been provided to me by my Chriropractor, my Physical Therapist and those I have learned over the years, I can brush my teeth that requires movement of my hands and arms, I can go to the bathroom which is probably TMI and obvious to some but that depends on the ingredients of this experience, I can find my keys which even to normal people is hard to do, I can be sure to wear my sun protective jacket or shirt AGAIN because of my lupus sun sensitivity issues, I can put my hat on my head and flatten anything that might have looked like a PASSABLE hair do, I can grab my bags and hope I can even carry them, not to mention just dragging and pushing through all my symptoms I might be having for the day like FATIGUE which is a huge issue for me, stiffness as mentioned a bit before, weakness, balance issues, aches and pains, the itchies, HEAT FATIGUE which is separate from regular fatigue and is still playing a bit part of my life here in LA even as October looms, SUN FATIGUE where yes even the UV rays sneak through the CLOSED window blinds and can affect my lupus, dry mouth, dry eyes, numbness, tingling, nausea, constipation, and all the other digestive icky stuff and I could go on and on about symptoms, and THEN I can hopefully remember what I need to bring and actually bring it (Memory is also a serious issue and symptom), go into the hallways into different UV rays and temperature, lock the door if I can remember to, go into the elevator, deal with the fluorescent lights that could also affect my lupus due to the UV rays that blare from these awful lights, ride the elevator and hope I don’t get dizzy (another symptom) from movement, all the while hoping I can stand this whole time if my legs will let me, walk to my car, unlock it and put the stuff in my car and then get into the other side of the car…….AND is anyone else tired?  I mean, I haven’t even left the apartment building yet.


I’m exhausted just thinking about it. This is what I go through every morning if I have a morning doctor appointment to go to. This is what so many of us do. Have you all realized what you do in the morning? JUST the morning? It’s a wonder we can do anything EVER.

AND YET, I’M WORRIED ABOUT THE “OK POLICE”. That I might get “found out”.

I mean, Gawd forbid I say I’m OK. It’s as if the Disability Police are going to come and tackle me and say they “caught me”. That I’m going to admonished for being “OK”.

What is OK? Well, that is a very broad term for all of us. Yet some people and entities who shall not be named choose to think it must mean all is right with me or you or whomever it the subject of those 2 LETTERS.

2 LETTERS can implicate you. 2 LETTERS have the power to make me feel guilty. To make me feel guilty about what????? I have friggin’ MS and lupus! It’s a miracle to even think I could be the LETTERS “O” and “K”. Seems to me, those that think I can do more than I do should feel guilty if anyone.

Come on now. Sure, a lot of this is in my own head. But where did it come from? It came from a society that believes that we have to keep going and going and we’re NOTHING if we don’t keep going and we must be “LAZY” (if we stop and smell the roses for goodness sakes–needless to say I really don’t like that word because there is such a negative connotation to it) and that we have to accomplish the world and yet that’s never good enough is it? We live in a world that judges based on words, based on outward appearances when so much of what we ALL go through is invisible to the eye. So we live in a life of constant stress don’t we?


Why are we so concerned with what others are doing?  Why do we decide it’s wrong? Why do I think I’m wrong for being “OK”? Why can’t I celebrate it?????

For so long I have struggled. For so long I have felt CRAPPY. For so long something was wrong.

So why be so worried about the “OK Police”? Why can’t I just live my life? Why on earth do I have to be punished for feeling a bit better?


Now there’s a wide open word for ya. Oh my goodness! She said she’s better so it must mean that all bad and uncomfortable things have come to an end. I have news for everyone who thinks these things and all entities who use that word to stop taking care of someone who actually deserves the help (YES I SAID DESERVES THE HELP)! Guess what???? BETTER DOES NOT MEAN THAT I AM ALL BETTER AND I AM READY TO STEP BACK INTO THE WORLD AND WORK MY BUTT OFF NOT JUST ON TAKING CARE OF ME BUT ALSO TO WORK 40 HOURS A WEEK AND WORK AT LEAST THE EQUIVALENT OF MY PAST JOB AND WORK UP TO 50 (YES I SAID 50) MILES AWAY FROM WHERE I LIVE! And yes I am yelling.

Better means there is improvement. It means that I don’t feel so absolutely miserable that I don’t know how I can make it another day. And no that has nothing to do with ending my life. It means what I just said. It means that maybe, just maybe I can eat more than toast. It means that I might even be able to write a bit. It means I might be able to take a shower without wearing myself out.

OH NO! I’m writing a Blog! A Blog! I can clearly work right?

WRONG. Since I’ve been writing this post today my hands and arms have been throbbing a bit but I am determined to write it. I will not keep it all in and be quiet and stuffed into a dark corner where no one even has to know I exist. I have news for you. I do exist. I have a name and I have a life and I am not less than. I deserve to be heard. I have so much that I could feel crappy about. I have so much reason to think no one wants to hear me or see what I write. Those are delusions however. I will FEEL this afterwards. I won’t be able to wash the dishes by hand because we have no dishwasher and it’s the only way to get them clean. I won’t be able to think clearly for awhile because I’ve used so much of my mind energy to write and focus on this that is also so fulfilling.  I won’t be able to do the 4 loads of laundry even with my husband’s help because I’ll need to rest. I also won’t be able to focus on the bills that need to be done. Yes, I even do bills. I struggle through them cognitively (I deal with a hard time concentrating quite often due to MS symptoms.)

Oh sorry. Should I have even mentioned that I can sometimes do dishes and sometimes even do laundry with help? Or that I do bills? Yes, even those of us who are disabled have bills to pay. Lots of them. We may not have a lot of money to pay for them though. Heck, we might even have more due to health insurance and other medical expenses that drive us out of our minds. Or maybe I shouldn’t be writing this because then it will look like I can work. Again, I’d be expressing myself too which might be bad.

My awesome Chiropractor, or Holistic Healing Coach as I like to call him, ordered me to celebrate me feeling better and turning a new corner to improved healing. He said I should shout it out. I still cowered a bit when he said that and he noticed it right away. “Why are you sinking a bit?”, he asked me. I had to tell him I felt guilty. “Guilty? Why? Embrace it! Don’t let anyone make you think otherwise, especially you.” I’m trying Dr. D I’m trying.

Isn’t that the whole point? Shouldn’t I be encouraged to take the time I need to be getting the help I need even financially that by the way is not mooching from the system? Shouldn’t it be OK to see me out and about? (There’s those 2 letters. Uh oh.) Shouldn’t I be cheered on to keep doing what I need to do so I can become even more of an “accepted” member of society? Here’s an idea. Perhaps if I keep doing what I need to do to heal and recover I can go back to working because yes, I do want to be working. Sure I don’t think I can ever go back to doing what I was doing or being in that kind of environment again. It was too chaotic. It was just too much for me. That’s OK. (those 2 letters just keep sneaking up on me). But I’d really like to help people in some way. That would be neat. Maybe there’s a future career in that for me.

So today I declare that I shall not let my own mind become the “OK POLICE”! I shall not let the thoughts, attitudes and feelings of others affect how I live my life. (Oh wow. This might be too much to ask for at once.) I shall not let others get me down.


Perhaps maybe even one day in the near future I’ll be better than “OK”. How cool would that be?

But I have news for everyone who thinks that I should be able to jump into the life of a “working” person. Actually, this brings me to a new tangent. Just writing that line has sidetracked me. I’m going to keep these thoughts in this order for you all to read because sometimes stream of consciousness is so important to help us understand each other. Here’s a thought:


My JOB is to keep taking care of myself. Do you know how hard that is? How good are you at taking real care of yourself? It is much more than a full time job! Heck, I need an assistant just to help take care of ME. I DO WORK. I still go to AT LEAST one doctor appointment a week. I still have to chase down my medications and supplements. I still have to try to eat healthy. I still have to exercise. I still have to make sure I get enough rest because gosh darn it life is tiring and then adding multiple sclerosis and lupus on top of it magnifies it a gazillion times more.


ANYWAY…back to having “news for everyone who thinks that I should be able to jump into life of a ‘working’ person” as mentioned above before my tangent. MS and lupus are no joke. They are not CHOSEN as part of my life path. They are DISEASES. They literally cause way too much “Dis-Ease”. They are always making me feel something uncomfortable. Yes, I am STILL always feeling a symptom. There has not been a break in years. Over 10 years AT LEAST. And they can get worse and flare up WITH NO NOTICE. They are completely unpredictable.

SO NO. I’m not OK enough to work just yet. I’m not sure I will ever be. This doesn’t make me feel so good about myself sometimes. It’s one of the hardest realities to ever have to live with.

WHY? Maybe we’re not all supposed to be members of the Rat Race. There are so many other ways to live our lives as part of humanity. If we all did the same thing we wouldn’t get anywhere.

So you know what, “OK Police”, try it. Try to tackle me and then what? Because here’s the thing. YOU ARE NOT GOING TO CURE MY MS AND LUPUS. THEY ARE ALWAYS GOING TO BE THERE.

And it is OK (I say this proudly now) for me to be OK. It is OK for me to need your help if I asked for it. It is NOT OK for you not to help me if you are judging all I do on what you read on a screen. (I am sending this message along to an entity who judged me by my writing.) And while I continue along this path of OK-ness I’d really like it if you would at least join me before judging. We can walk together. We don’t have to stand next to each other especially because I’ll still be working on even being “OK” with you being on my path but I’d really like it if you’d try to UNDERSTAND me first before PUSHING ME DOWN and doing your best to make me INVISIBLE.

And to tell the truth to my own mind, since this really is just one big discussion with my insecure sensitive mind, it’s been 2 months since I wrote that lost Blog post about how “I’m OK” and not once have I even caught a glimpse of the “OK Police”. I can let it go now. I can at least try to.

AND I WILL CELEBRATE AND EMBRACE THE FACT THAT I AM GETTING BETTER! Sure it’s not the better I want but it is still Progress. It doesn’t have to be Perfect (dang it), but it’s in the right direction. I deserve a good quality of life just like everyone else. And I am really starting to feel it.

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301 DAYS! That’s How Many Days…

–I’ve walked in a row!

I can’t believe it! I have walked 301 days in a row. I am not kidding. I have been keeping track since I knew that I might be able to make it walking day by day.

I’m so excited! If/When I make it to a full year I will have to call/send a thank you not to my Physical Therapist who spurred me on last year in the first place. She told me just to walk. That walking was THE THING for me to do in my situation with MS and lupus. There was no question. I needed to walk. What did that entail? That entailed not judging myself by how far I’ve walked or how long. That I just needed to make it a point to walk. Seriously, she told me, I don’t care if it’s just a few minutes. If you don’t keep your legs moving you will be in trouble. Your MS and lupus will get the best of you and you may find one day that you can’t walk or that they are just too stiff and you may not have the motivation to do what you need to do–WALK– and to keep on keepin’ on.

So that’s what I’ve been doing. How do I do it? Well I walk near where my doctor appointments are. I walk in my apartment around and around if I have to. I have a walk dance I do that must look really cute. I walk around the block near my apartment. I walk at the mall I’ve gone to. I walk around the museum I have a membership to. I walk/march to a TV show I’m watching.


And my legs are so much better than they used to be. Sure there are days that my legs think I must absolutely be kidding them but they usually thank me in the end. In the beginning it was much harder because it felt like when I was walking that I might be causing some damage. That there must be days I shouldn’t be walking at all and I should rest them.


I am now more confident on my feet, I feel stronger, I have more endurance, I can walk longer distances and handle hills better, my mind and head get some de-stressing and meditation, I get to see outside and be with the world and the earth, I get to move my whole body, I can participate in more events, I can stand in line at supermarkets longer, I can handle my life better in GENERAL.

And that’s because I WALK.

And now I don’t know how not to walk during my day. I think I would be lost without walking. My body asks me for it and reminds me if I don’t do it.


So tonight as I think about what is frustrating me, I will turn my mind to the positive things going on in my life and one of the main parts of my life is that I WALK and I have WALKED 301 DAYS IN A ROW.

A TRUE MIRACLE and I am absolutely grateful to have met a woman, my previous Physical Therapist, who was able to get the message through to me in the right way.


Well, turns out she might just be onto something.

I think I’ll continue to do just that.


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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.


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.


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.


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.


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.


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I had my last scheduled Physical Therapy Appointment today for this round. Not sure when I’ll be back. Guess it depends on when my body tells me it needs it and it all works out.

You know what’s so cool? I did it! I went for 3 months. I exercised and I did the exercises CORRECTLY for the first time in a long time. I let go of all judgements of my body and was able to learn all kinds of exercises that really help. I think I gained a little more self-esteem from doing it too!

I give my Physical Therapist a lot of credit for my progress and willingness to exercise more. She was direct and to the point which is what I needed and somehow she was able to deliver the message to me in such a compassionate and patient way that I was willing to commit even more. I have had numerous doctors tell me in the past to walk walk walk. That is the best thing I can do. I gotta move my body. It’s so important. She is the person I heard the clearest.

I had a lot of fear about whether I should really walk every day. Sometimes my legs have felt tired and I have felt like I really shouldn’t move them much just to give them a break. She was the person who finally got the message through to me at the right place and time and it FINALLY clicked that it was ok to take the risk and to walk. I didn’t have to walk far. I didn’t have to walk long or fast. I just needed to do my best to get moving somehow and the ideal place to start is to walk at least a little every day. Just commit to that.

Well it’s been almost 6 weeks and I have been walking every day. I started with 5 minutes and told myself that was good enough. I needed to be able to build up stamina. If I took on that 30 minutes right away I was gonna be in trouble within a few days and not make it. My body would’ve been screaming to shut down. I just know it. I’m now up to 10 minutes. I wish it was more but there have been days when I have felt pretty darn crappy with fatigue, weakness, stiffness and pain that the last thing I wanted to do was walk…BUT I DID WALK…


How do I do it? One step at a time. If I have to go backwards there’s always a chance for me to go forwards again.

STEP BY STEP. That’s all it takes. And my legs are thanking me for it along with my mind. I need the mental break. I need to get the toxins out. I need to MOVE.

So today as I was leaving my last PT Appointment I took the time to thank my Physical Therapist (I will name her “E”) for her help, her time, her patience, focus, humor, direct communication, open communication and her compassion and said that she inspired me to keep going. It was quite a touching moment and I wanted to make sure she understood how much she helped me get over myself and just TRY it. Her eyes teared up, she gave me a hug and thanked me and she said that that was one of the nicest compliments she’s ever received and that it meant so much to hear it.

And then to send me off she told me to just “Keep On Keepin’ On” and to not give up. EVER.

The Medical Field needs more people like her.

Thank you “E”.

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