Posts Tagged With: disability

Life Interrupted…Again

I’ve been sitting here on the couch. That is all. And yet there seems to be movement going on in my body. Movement of sickies taking over. The sinuses are getting fuller. The chest is getting a bit tighter and the cough is happening more and not just a little bit. This time it’s not looser like this morning. It’s getting tighter and the cough is turning more into a “bark” as I’ve called it. And this is just as I’m sitting here.

The cough came on apparently just for fun at about 10am this morning. It was more like a tickle. It was looser like it has been if I start to feel sick at all these days. Things have changed a lot since I started seeing my Chiropractor earlier this year and it’s been helping to boost my immune system with each session. Usually when I’ve felt sick now it starts up just a bit and then an adjustment or my own body fight it off.

Actually, I thought that’s what I was doing last week. I can’t really describe how I felt last week. I felt a wee bit sick and it was kicking my whole body into a bit of an edge-of-a-flare-overdrive. I was also exhausted. So I did a lot of sleeping and seemed to finally fight it off by the end of the week. And then yesterday what I believe are allergies, started.

This is my typical sick path. It starts with just getting that “pre-sick” feeling. Hard to describe but I’m guessing you know what I’m talking about. Then it comes on heavy, starts as allergies and immediately transforms into a full on infection. Been doing that pretty much my whole life off and on. I’m very sensitive to stuff. Stick me in a bubble and I swear I’d still get sick. It’s ridiculous.

So I started taking care of my almost chronic infections with a Pulmonologist almost 2 years ago and he helped me turn a corner to a much better version of “better”. There were actually breaks in between infections. And then earlier this year I started seeing a Chiropractor who has helped me keep the sickies away at least 6 times. Well not this time.

I saw him today. So my “allergy sickies” started yesterday…again. And they have been relentless. And then this morning the cough started at about 10am. I saw my Chiropractor at about 12pm. I told him about it and he said, “Well it sounds like you need an immune boosting Chiropractic adjustment”. I agreed. I felt much better from the adjustment. I start to take a walk outside again after the adjustment and the here come the full sinuses. Here comes the cough. They picked right up where they started.

So I’m thinking at this point in the afternoon that perhaps the adjustment dragged out the sickies. Perhaps I’ll be feeling a bit worse before feeling better. Well OK.

PERHAPS.

But at about 5pm I wasn’t thinking too much about it as I rested on the couch and debated getting up to feed Cleo and perhaps have dinner myself and then do some paperwork…

UNTIL I COULD FEEL THE INFECTION MOVING INTO MY BODY AND TAKING OVER.

It’s pretty much what it felt like as I sat there.

This is my LIFE.

LIFE INTERRUPTED…AGAIN.

So hard. So frustrating. So uncool. I’m trying to get some things done. I have my parents visiting in 4 days. I had plans this weekend. Yes I have learned to be flexible but that doesn’t mean I’m happy about it. That doesn’t mean it doesn’t get in the way.

Yet again I have to STOP.

STOP.

My body needs me to give it love. My poor body. My poor mind. My mind had other plans. There is life happening around me. I get so tired of resting. I get so tired of drinking and taking yucky medications and teas and special concoctions in order to TRY to feel better. I get so tired of feeling crappy. I have symptoms 24/7 of some sort. They have not stopped for at least 11 years. There is always some kind of discomfort going on in my body.

I have MS, lupus and IBS as my main crap.

THAT SHOULD BE ENOUGH.

But it isn’t. ‘Tis the season for getting sick. I’ll need to stay up tomorrow morning after feeding my Cleo Kitty and call my doctor’s office to try to get squeezed in for the day.

ON A FRIDAY.

Yuck.

I’ve found myself in a lot more acceptance in these almost 11 years since my multiple sclerosis diagnosis but I really just want it all to stop bothering me to be honest. I am tired of not feeling good. I am tired of all of it. I am tired of having a disability. I am tired. This is my life.

LIFE INTERRUPTED…AGAIN.

Don’t get me wrong. I know I’m still living. I know I can still have a life when I’m sick. But so much of it has to stop. I need to rest. I can’t be going out a lot. I can’t be using my brain too much or I get fatigued. We all know what it’s like to be sick. We have to really stop everything in order to get better. It’s just the way it is.

And I’m told I can work. Well tomorrow morning I need to try to get in to see a doctor. That doctor would probably tell me to be out sick for a few days. This can happen anytime and for numerous reasons for my body. It is not that easy to work. I’m not employable right now and that can really upset me if I think about it too much. I need to see doctors, I need to rest and try to recover, I need to deal with crappy bills and insurance, I need to have medical tests done and I need to have time to be me…

Last week I fought what is probably this same sicky bug and didn’t do much for almost a week. This week has been much better but here I go again. I’m trying to have a life flow here and get some things done.

But my body needs love and attention.

It needs to be Priority.

Again.

And so now that my sinuses continue to fill up and the cough hurts me when I breathe as I write this I will stop writing.

Because yes, my life has been interrupted again.

 

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THE OK POLICE

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”.

WHAT????

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.

OBVIOUSLY.

OH WHAT A FANTASY. I WISH IT WAS THAT EASY.

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.

AND THAT IS JUST THE MORNING.

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?

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?

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.

I SHALL RISE UP!

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:

I AM A WORKING PERSON ALREADY.

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.

IT’S WORK.

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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I’M OK

I’ve been reflecting a lot about my Blog post yesterday, “Diagnosis Part 5: MRI”.

It helped so much to write that. I needed to really get that out. I needed to tell the whole world about my experience. It freed me a lot. I felt lighter after I wrote it and I’ve been breathing easier ever since.

And what I’ve become aware of even more today is something so enlightening and positive.

I’M OK.

I, Nahleen Virginia Blake (yes that’s my Middle Name), am OK. Oh my goodness! I’m OK. If you had told me that night of my first MRI that over 10 years from that whole experience I’d say I was OK I’d have pushed you away. I’d have ignored you. I wouldn’t have believed you. I probably would’ve gotten sick to my stomach.

No Way! I was so terrified about my life, about my future, about my body and everything that I had no control over. I “HAD CONTROL” of my life back then…I thought. I was on my path. Full speed ahead! Get out of my way. I’m following my dream. Actually…I’m chasing my dream. It can’t get away. My grip is so tight and I won’t let go. Keep on going and going and going and going. Well, guess what Energizer Bunny? You can’t keep going either no matter what those commercials say. Sorry but you run out of Oomph too!

Throughout these 10 plus years since I have been told by so many people older than me that I am too young to think the way I do. That I am too young to go through what I’ve gone through. That I should be going through all of this illness and crap when I’m older. Well, let me tell you all, I HAVE NO CONTROL AND I NEVER HAVE. I was powerless over what was happening in my body and my mind was bound to change. My life was bound to change! My outlook was bound to change! Change change change! Life is about change!

How could all of that not change?

I couldn’t work 2 jobs anymore. That was crazy to start with. I couldn’t be a Production Assistant for 12 hour days on my precious weekends anymore.  I couldn’t couldn’t with the couldn’ts. Suddenly my life came to a halt.

SORT OF.

I had to rest more.

I’M SORRY. DID I SAY REST?

What is REST? Well, that means I STOP all I’m doing to the best of my ability and sit my butt down. I can lay down on the bed. I get some quiet. I learn how to meditate. If I can’t stop I at least SLOW DOWN. Yes, slower is OK. Really. There are so many ways to rest. Forcing everything to a point of a racing heart is NOT RESTING. Nope. Everything in Fast Forward is not resting.

Actually, my life is usually better than OK but I didn’t know that until 8 years later when I was diagnosed with a second disease of lupus. A…SECOND…DISEASE……..OF…LUPUS….Now THAT ONE KICKED ME OFF MY FEET AND STRAIGHT ONTO MY BUTT and there was no getting up.

No question.

I hit a wall so hard it’s a wonder I even survived and I am NOT EXAGGERATING.

And my choices were simple yet so complicated for someone like me to understand. You see, simple is not simple. It can’t just be that pretty much everything in my life has to STOP AND SLOW DOWN and not just a few things here and there. This affected EVERYTHING.

I HAD TO CHANGE.

MY LIFE HAD TO CHANGE AND FAST.

I FELT I HAD NO CHOICE.

See, I used to say I had no choice. I had to stop working…for now…until further notice…maybe…no really…I still wasn’t feeling up to it months later…symptoms just kept kicking my butt…I needed Tender Loving Care from everyone but especially from ME. I could’ve gone back to work. Right. OK. And run around and been in an environment that was so toxic for me that I would’ve ended up in the hospital the next time. Sounds like a great quality of life.

It was ME. I had to change MY LIFE.

I had to take care of ME.

Why was that so hard? Why IS that so hard?

I know it’s worth it. I know I’m worth it. And it’s a work in progress…It really is about Quality of Life, not Quantity.

But when I focus on TLC and turning the attention of my TLC to me my life gets better. My life looks different, feels different, and even smells different. There are flowers to smell and see everywhere here in LA. There are trees with leaves that blow in the breeze. That is one of the most lovely sounds I have ever heard. There are clouds. Oh I have always loved clouds ever since I was a little kid. Give me a cloud to look at and I am thrilled. Everything else goes away. There is an ocean that keeps me Present when I can see it. Even driving by it changes my mood if I can see it. I am in the moment. Do you know how beautiful the moment is? Have you been able to feel your breath as you look at the vastness and the colors of the ocean as the sky and the light of the sun reflect on the ocean? Have you watched a seagull float along in the sea breeze? Even watching other people in the water puts a smile on my face.

Smiling. I do that so much more than I used to. I used to be told all the time to smile when I was in my 20s before the MS diagnosis. I had no idea I wasn’t smiling. I was so dang busy pushing and pulling and forcing and going that I forgot to smile. I had a frown on my face I was so intense. It’s a wonder I had any friends, family, work colleagues or anyone else who wanted to be in my life.

But somewhere along the way I forgot me. I still do sometimes and I am constantly working on bringing ME back.

And bringing my focus back to me, I see the shining emerald green glimpse of hummingbird. I see the butterfly off in the distance. I find myself sitting in my car listening to my favorite song and not getting out until I’ve finished belting it out to myself. And back to smiling because I find it so powerful. Smiling at others? Smiling at others and watching them smile back. It is so rare now for me not to connect with others with a smile. I have met some of the best people in the grocery store. We are all just people living our lives trying to get by. I have had lovely conversations in hospital building elevators with others about colors and clothing and my Muppet bag/purse.

I have sat next to some wonderful people while sitting in doctor waiting rooms. See doctor waiting rooms are tricky for me. I still can’t stand going to the doctor. In fact, I think in some ways it’s worse now because I have so much chronic illness doctor’s office visit fatigue if that makes any sense. I am sooooo done seeing so many doctors even though the appointments are currently usually further apart. Usually. But those waiting rooms can be so grueling and talking to others helps. If I don’t I feel closed off and not grounded. I find myself more nervous about the appointment than I was before. I find myself noticing that so many people are not feeling well, that they’re older and looking at me wondering why I’m there at whatever Specialist Doctor I happen to be at. It’s rough.

I have gotten to know the office staff at almost every doctor. I now have at least 2 friends at the Pharmacy I go to and I’ve had coffee with one of them. They are people too. Great gals actually. I have learned that it’s really not a problem usually to stand in line at a store. Why not look around? Why not watch a little girl or boy with their Mom and see what they see as they look around? Getting annoyed and irritated is probably going to make me feel worse. Life does not have to be lived so fast.

And what about finding myself through writing? I think I’ve always been a writer. I have written off and on all my life. This Blog has helped me get through what was a huge writer’s block for too many years. I need to write. It is part of my Being. Even if I write the hardest and deepest thoughts and words I still come out of it smiling. I wrote! I expressed myself!

And then there’s meditation, guided imagery, spiritual support groups, coffee groups, texts with friends, Facebook, Twitter, the online community in general, the longer conversations I get to have with people on the phone if I feel up to it (this one is still hard for me because being social is one of my favorite things but it also tires me out very quickly and as I get better I am more able to talk and maybe even visit but it’s still a one day at a time thing), the exploring of neighborhoods as I walk every day (by the way it’s been over 450 days since I started taking a walk every day!) I never know where I’ll end up. I have found the greatest local businesses that way. Some of the best coffee shops are in Santa Monica. I wouldn’t have known that before.

And sitting on my balcony especially at night is one of my favoritest things to do ever. I sit back in my lounge chair and look at the sky, look at my iPad (feel so fortunate and lucky to have such a supportive husband who bought me an iPad even before my lupus diagnosis and it has changed my life–the online world is a much more accessible place because sitting at the computer with the big screen can be hard for me for so many reasons), talk to my plants, and I can even have plants that I love and adore! And let me tell you, they respond so much better when I talk to them and give them love.

I have found faith and hope during these slower times. During these quiet times it has not all been fabulous. As they say every rose has its thorns and that is so true. There is beauty in life everywhere. There is also struggling, and excruciating feelings, and trudging, and crying, and anger, and memories, and reliving traumas, and temper tantrums, and grieving, and missing the old days when I thought my life was something else, and when I was younger before my MS diagnosis, and wanting to punch things and having very very hard times and hard days. I find I’m also having an identity crisis. Who am I? Who is Nahleen with MS and lupus? Will I ever work again? What will I do? Which idea am I going to pursue? Where is my life leading? Is this my life? I can’t live my life as someone who is identified only as my illnesses but it is a major challenge to break away from that when my life is lived in doctor’s offices talking about everything that’s still wrong with me, even talking about those few things that are getting better is still on the subject, just being there reminds me too much about my reality, having to prove my Disability to other entities who are trying to not help me, dealing with insurance issues, reliving the past for new doctors, taking over 4 hours to get going before I feel human in the morning, taking my medications, keeping up with my medications, keeping track of symptoms and the severity of them and watching for patterns, exercising so I can keep functioning and I could go on. Please let my life be more than that.

BUT YOU KNOW WHAT?

I’M OK.

I’m better than I was 10 years ago even before my MS diagnosis. I see the world in front of me more. I see the world. I am in the world. I am not on the outside looking in. I am NOT living the life I want to live on a whole just yet but isn’t that normal? I want to live a life WITHOUT MS and lupus but that is a lot to ask right now and to be honest it pisses me off and I can feel the rage right now even as I write this. But right now I’m in a better wave. I don’t know how long it will last or if it’s the new norm. Life is always happening and it is always in session. I have learned that time and time again. And I don’t know how I’m going to feel the next moment from when I write this sentence but for now I’ll take the feeling that life is a bit easier. How cool is that? I’m a bit more at ease. What a gift.

But it is not a life to be rushed through. Time goes by too fast. I was a tied up ball of knots rushing around plowing my way to the next goal in my mid-20s thinking I would someday rule the world, but it was never good enough. And in the past few days, life is good enough. Sure, I want more money, I want a bigger place to live in, I want that dent out of my car that someone so nicely put in there at a time I wasn’t around to see it happen, I want to be thinner, I want to feel so good that I am frolicking and skipping down the street and I don’t ever want bad things or hard things ever to happen again.

But that’s not real.

And I’M OK.

And the best part is there are parts of my life that are so very happy. I am happy with my husband and my Cleo Kitty. Corey keeps me laughing and on my toes. He is so incredibly supportive and always by my side. We are the best team I know. Cleo Kitty and I are best friends. We have been there for each other during each of our health problems for the past 3 years. She cuddles and plays and needs to eat and she demands her pets.

I also have a roof over my head, wonderful people in my life who don’t let me isolate even for one minute and they are from all parts of my life, 2 cars that run well, air conditioning that usually works, clothes to wear, food to eat, a bed to sleep on even if the mattress is so old there are hills and valleys in it and the list is endless.

I have a full life. A pretty darn good life. It can be very hard. And sometimes it can be easy but those times seem rare. Perhaps that will change. I don’t know. What I do know is that I breathe easier. I’m not nearly as tense. I feel much better than I did last year in July 2012 (and it doesn’t mean I am all better but I will take whatever I can get), I smile and giggle more than I frown and grumble. My bad days aren’t nearly as bad and intense and I recover quicker. And this is all just for today.

That is all I have. That is all WE have.

And that is OK.

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Doctors: Please Take ME Into Consideration

Full Name: Nahleen Virginia (Knight) Blake. Knight is my Maiden Name. Where did Nahleen come from? Well funny you should ask. I’m sure I’ll have to repeat to you over and over how to say it and how to spell it but let’s get it right the first time. What’s the significance of Virginia? It’s my Grandmother’s Name.

Birth Date: 5/28/77. Thanks! Yes I just turned 36. Uh huh. I’m aware of what 36 means. Wait, what does it mean? Do I dare ask?

Male/Female: I’ll let you guess.

Phone Number: Oh great now you’re gonna bug me all the time.

Any Other Good Numbers to Call?: Nope. And even if there were some I wouldn’t give them to you because you’d chase after me and I’d get no peace. And no you are NOT getting my work number. I made the mistake of telling you that number before and you kept calling me there. Um hi. I’m busy there.

Address: Great. You might stalk me. You’ll at least be sending me bills here. Why else would you want it? Why do I want to give this to you?

Is This a Good Billing Address?: Knew it. It’s all about the $.

Emergency Contact Phone Number: ACK! What’s gonna happen here? There’s gonna be an Emergency here? What if I have no one? And if I give you someone, will you call them every time you can’t reach me? What if that person is across the country? How will they know where I am? Great, now they’ll be worried.

Weight: Does that really matter? Is this any indication of anything? There is no black and white here.

Height: 5’Short–according to my Chiropractor I should be 5’5″ someday as long as I keep going to get adjustments/treatments from him.

Usual Blood Pressure Reading: As if I’m gonna tell you if it’s high. Uh huh. But you’ll take it here in the midst of White Coat Land and freak me out EVERY TIME and take that as a regular reading. Oh you want me to check it at home to get a more accurate reading? How will that be accurate again? I’ll know when I’m gonna be doing it and it will go up.

Usual Body Temperature: 97.5 but you won’t believe me so when you check my temperature and see that it’s 98.6 you’ll say that’s normal and I’ll say it’s high for me and you’ll pass it off.

Hair Color: Well now that’s a good question. Some kind of purple since March 2012.

Hair Type: Pretty dang curly. It’s really short right now.

Eye Color: Blue and to me my eyes are tiny. I also wear glasses so it’s hard to tell they’re as blue as they are.

Birthplace: Homestead, FL (Does that really matter?)

Where I’m From: Kingston, NH

Where I Live Now: Los Angeles, CA

Grow Up With Both Parents?: Yes. I’m blessed to have done so. However, growing up with Single Parents wouldn’t make me less than.

How Old Are They?: None of your business.

Siblings?: Yes. An older sister.

How Old is Your Sibling?: Isn’t that Private? I already said she was older.

Employed?: No. What’s your point? Thanks for reminding me.

Insurance?: Yes. What if I said no?

Are you the Insured? The Primary Card Holder?: HUH?

Primary Insurance?: Ummm…

Secondary Insurance?: WHAT THE?! Leave me alone!

Insurance Information (and everything you didn’t even know you needed to know…): OK. Let me just dig through my purse and wallet and FIND that all for you. Didn’t I just give you my Insurance card? Isn’t it all on there?

Driver License Number: Geez. Nosy! And didn’t I just give you my ID? Isn’t that what this is?

Social Security Number: None of your business. Stop snooping around. I think I need to report you.

Disability?: Meaning what? Yes I have Disability Coverage but don’t get me started about all of that. Am I Disabled? YES! OK?! I think that’s in the mind of the beholder.

Married? Single? Divorced? Domestic Partner?: What does that matter?

If Yes to Married, what’s your Spouse’s Name?: What if I’m not married? I feel like crap now.

If Yes to Married, Spouse’s Social Security Number: Well now that everyone else has been left out…now why on EARTH would you EVER need their Social Security Number?

Allergic to Anything?: What exactly do you mean by allergic? I hope not! Great now you have me paranoid.

Eyesight: Yes I have it but I’m pretty blind. Do you mean do I wear glasses? Yes.

Illnesses?: Must you remind me? (Sigh.)–Multiple Sclerosis, Lupus, High Blood Pressure, Asthmatic Tendencies, Hay Fever, IBS, Prone to Infection, Probably Depression–and now I’ve crawled under the chair in the corner…

Is This a Work Related Accident?: I knew it was an accident I had all these illnesses! Yes! I’ve wanted to blame my work for something! Perfect!

When Did It Happen?: Ummmm…which dates are you looking for? What are we talking about now?

Medications: Hmmmmm. Do you have a whole book I can fill out? This little box here ain’t gonna cut it. And do I include vitamins in this or not? None of you ever know if you care about these or not.

Other Doctors?: Too many to count. Again, looking for a book to fill out. I might have room to write down one doctor.

Can We Contact Your Doctors?: Meaning what? Yes aaannndddd No. How’s that? And will you really contact them?

Any New Doctors?: Chiropractor (not that you pay attention to that because they are NOT in Western Medicine…OH but he’s a doctor too? OK…). Psychologist/Psychiatrist: Yes she’s both.

Symptoms?: Ok great. Thanks for reminding me. Yep. (Tense up).–Fatigue, pain, stiffness, weakness, tingling, heat fatigue, eye light/dark sensitivity (new–and I’m annoyed), dry eyes, dry mouth, cognitive symptoms, emotional symptoms, overall malaise, hair loss, nausea, bloating (hmmm there’s not enough room on here. In fact, there’s not enough room in any of these boxes on here. What the heck? Do you really have any patients who can fit their life/health histories in such a small space?)

WHAT KIND OF A FORM IS THIS?

*THESE ARE JUST EXAMPLES OF WHAT I’VE BEEN ASKED OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AGAIN!*

Seriously, doctors, nurse practitioners, physician assistants, medical assistants, nurses, office staff, lab technicians, etc.: How often do you really look at these? Are you even looking at these? And do I even want ALL OF YOU to see EVERYTHING I just answered? That is a flat out NO! And why isn’t there an overall database that all medical professionals have access to? Why do I have to KEEP filling out all the same questions? Why is each form different? Why can’t they be uniform? I’m tired. I’m tired of writing all of this down. I’m soooooo over rehashing all of this.

I AM NAHLEEN.

What does that mean? That means I’m a Person. I mean something. I’m not my penmanship (which used to be really good btw until I kept having to write these answers over and over again). I’m not just my name. I am 3D. I have Depth. I giggle a lot. I’m struggling all the time with my diseases. I’m not working and that was one of the hardest decisions to make. I’m afraid to say I’m feeling better because I don’t want you to think that I’m all better and shut off when I tell you that. And who knows who will be looking at these files/records and will assume I’m magically all better and then what? I don’t fit in a box. I don’t come in black and white. I come in many colors. Perhaps that’s why I express the purple that’s within me. Yes, my hair is purple. That doesn’t mean I’m happy. That also doesn’t mean I’m crying out for attention. Purple is a part of who I am. Purple has been a part of my soul since I was at least 10. That’s a long time. Can we get passed my purple hair? Thanks. Yes, I have a husband. We’ve been together 15 years. Married 6. Why does the part where I’m married mean more than the commitment of the relationship of 15 years? Yes, I have a weight problem. I’d think I myself would be the most aware of this at all times since I have to live with me. I have ALL MY LIFE. Sure I don’t get to exercise as much but how much do I need to do necessarily? I’ve been walking every day now for 401 days! I know it’s cool. You better think it’s cool! I stretch every day too. Cardio? I try. Coming here to all of my doctor appointment should count as cardio. I’m serious. Oh and did you ever ask me how I am? How I’m feeling? How I’m really doing with all these illnesses? You want me to come in next week too? Did you ask if I’d feel up to it? Did you take into account my life? You are not the only doctor in my life. You are not the only part of my life. You want me to try a new medication? Oh it only has THAT many side effects? Will you be able to pay for it? I’m currently low on funds. Did I mention to you that I’m going on a trip soon? That I want to do more than go to doctors? That I want to have a fulfilling life not focused constantly on medical crap? That I want to try to live my life not ALWAYS talking about my illnesses? Not being defined by these life disrupters? Did you know I have a Cleo Kitty? That I love to write. That I have a Honda Fit that I love? That I miss my family and loved ones back east like crazy? That I’d love to be a Producer of TV, feature films, short films, videos of any sort and to be that creative and not worry about how much time that would entail and how much that would wear me out? That because I’m always seeing you I get really tired and don’t have a lot of time to be social? That I love to be social? I almost forget this myself because I’m so caught up in stuff with you. Don’t get me wrong. Thank you for helping me or trying to. Thank you for helping me feel better (well at least a lot of you–I won’t talk about the others). Thank you for being proactive and part of my time.

BUT PLEASE TAKE ME INTO CONSIDERATION.

I am a person. I have a life. You take up a lot of me. I don’t see you for fun. I see you to get healthy. Perhaps we need to take a look at the best way to keep me healthy. Is it by seeing you all the time? Filling out these forms? Getting my arm constantly squeezed by the blood pressure cuff only for it to spike when I’m there? Is it by constantly talking about my weight? Is it by constantly stabbing my arm to check my blood work levels over and over again because you haven’t been in communication with my other doctors about my blood count levels that were taken just last week? OR is it by spacing out these appointments a bit more? By letting me expand and grow my life to see what I can do and not do? By taking the time to see that I am a human being who needs to breathe and to LIVE and experience the world as this newer more enhanced version of Nahleen???

I’m not the same Nahleen who was working 3 years ago and pushing to do my best no matter what cost it put on my body and my life because I didn’t know or understand anything different. I am a Nahleen who is feeling out my boundaries. Who is not willing to be horribly sick again if I can help it. Sure my body might have its own plans but I will not push it too far. But see I don’t have much chance to see how far I can push. If am pushing, it’s to see my therapist and chiropractor while I’m seeing my other doctors. And these 2 new medical professionals in my life are helping me to figure out how to be a Nahleen with purple hair who still has a chance to smell the roses and look up at the sky (3 of her favorite things were just mentioned here), wants to figure out where her place now is in the world, wants to be social and not live within a medical professional tunnel of health, wants to try new things, wants to do more than rehash her health stuff over and over and who needs to BREATHE!

So if I tell you I can’t see you next week and there is room to BREATHE without putting my entire health at stake (I understand sometimes there are exceptions), please give me that room. You have your life schedule. I have mine. Please respect that. And if I don’t have time to see you, please COMPROMISE. With all due respect, it’s not all about you. You are not my only doctor. You are not the only thing going on in my life. Let’s talk about this. And PLEASE, don’t give me less care because I didn’t put my life aside to come in and see you and pay you more money. There is a phone. There is email. There is always another way.

THANK YOU.

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It’s So Hard to Have Multiple Sclerosis and Lupus and…Part 3

…and BE ME…

…and HAVE LIMITS…

I mean, let’s face it.  I’m a hard person to be.  I have goals.  I have ambitions.  I am a Go-Getter.  I am a Type A Personality by Instinct. The first idea in my head is GOGOGOGOGOGOGOGOGO!!!!

There’s no room for LIMITS…

Hmmmmmmm……

Welllll……

That’s really hard to deal with when I have multiple sclerosis and lupus.  I’m not even mentioning the digestive symptoms and syndromes, food allergies, environmental allergies, any infections that I might be fighting off, the fun womanly once a month irritations, sinus symptoms and issues, my crazy GOGOGOGOGOGOGO head, or even headaches that might come and go here and there.  I mean really.  I don’t get a chance to GOGOGOGOGOGO.  And if I do by chance get back into that habit, I am in TROUBLE and back on my butt FEELING AWFUL FOR SOME REASON…

UGH…

Sure that’s probably a really good thing.  Actually, it’s a blessing that I am grateful for quite often.  I’m grateful that I have to take it slower and actually see my life go by.  I don’t get a chance to be sprint through it.  I get an opportunity to get to know myself (scary sometimes yet really nice to do), to get to know others out there in the world who are cashiers and other customers for example, to smell the flowers, to really take care of my plants, to love on my dearest Cleo Kitty, to sit and just BE (so hard sometimes), to take my time, to look at the sky, to watch the world, to take a few extra breaths and maybe even DEEP BREATHS here and there…

BUT I WANT THE CHOICE to GOOOGOOOOGOOOO…or Do I?

I really have no idea.

I just don’t like having multiple sclerosis and lupus.  That’s just it.  I can’t stand them.  I want them to go away.  If I’m not careful I get sucked into a black hole of “Why me?” and “What did I do to deserve this?” and “Why won’t they just leave me alone?” and the list goes on and on…I think I could go on forever in what I call “WHOAISMS” and sometimes I believe I’m allowed to do that.  But I hope I have something to pull me out and I usually do.

So then I need to really work on spirituality whatever that means to me that day.  I could be meditating.  I could be actually letting myself sleep if my body and schedule allows.  I could be looking at the flowers.  I could be beating on my Bongos.  LOVE THAT by the way!  Seriously, if you have anger, I suggest you find something to beat on as long as it’s not yourself, or another living being, or something you’re going to damage—hmm….maybe I shouldn’t have mentioned to find just anything to beat on.  For a long time I’ve used the Hulk Hands that are out in toy stores that Corey has bought me (the first pair really was the best) that actually had Hulk’s voice and yelled, “Hulk Smash!” and would growl so when I put them on I got to laugh and feel big and strong and punch the wall.  I don’t recommend punching a wall without that kind of cushion.  PLEASE BE CAREFUL WHATEVER YOU DO.

But then now I have these Bongos and that’s great but I can’t just jump in and do a long set of banging.  I have to pace myself and only do it a few minutes at a time and build up to longer because then my hands and arms hurt.  Well, that’s just great.

So that’s what I mean, I’m always putting limits on myself and what I can do but in TRUTH: THERE REALLY ACTUALLY ARE LIMITS.  I’d like to continue to be able to use my hands and arms which are the most affected by both my lupus and MS and I’d also like to not feel the pain and throbbing from having overused them…on the bongos that I just enjoyed banging on to help me relax and calm down…

Then there’s the exercise.  Exercise is great to keep me flexible and stable.  Yay.  Go me.  Notice I’m not too excited about it.  Some days it feels like real work and like my body is complaining the ENTIRE TIME.  Then other days my body is thrilled and wants to be stretched and moved even more.  But again, there are actual limits if I want to keep functioning.  It is cumulative.  However, WALKING HAS BECOME MY THING.  I am well on my way to having walked 300 days in a row by the end of February.  AND THERE IS A LIMIT TO THAT.  I need to NOT JUDGE myself about walking and what I did that day.  I need to not push myself to walk an hour every day.  I need to be willing to only even walk a few minutes if that’s all I can do.  The TRUE BENEFIT comes out of keeping my legs and body moving and honestly, it’s helped my mind immensely too.  I have so much more confidence now than I used to in general just because of walking but they have truly loosened up and become more stable, strong and can endure more.  They DON’T complain that often anymore.  And by now it’s become such a habit to take a walk that I can’t imagine my life without it.

But then there’s trying to have a life.  I know.  Crazy.

A LIFE.

You know, that life where I can socialize with people, maybe even have some real friends out here in LA, maybe even keep in touch with the friends and family at a distance, spend more time with my husband, get out into the world and do things besides grocery shopping (although that is important too), and doctor appointments, and medical tests and be on the phone with something regarding Disability, Medical Insurance, following up with doctors, finding an attorney for a legal issue, filling out paperwork and the list goes on.  And what about being creative?  I yearn to be creative but I can’t do too much OR I have to slow down and my body asks for it.  But when will that happen?

WHEN AM I DOING TOO MUCH?  WHEN IS IT WORTH IT TO PUSH IT?  WHERE IS THE LINE?

There is no pattern or predictability.

Again, the worst part about these diseases is the UNPREDICTABILITY.

For goodness sakes, if only they were PREDICTABLE.  What a different world it would be.  I might be able to make plans and keep them.  I might be able to sign up to take regular hobby classes or regular ANYTHINGS.

I mean, let’s not forget it takes me at least 4 hours to get ready in the morning if I’ve included waking up, stretching my body in bed to get it moving again (tends to get stuck and stiff from sleeping if I’ve slept that is), do more stretches to stand up, follow a spiritual way of life (numerous ways to do that and I try to be creative with that), probably go to the bathroom (I know TMI), take a few pills, feed and be with my Cleo Kitty who has health issues of her own and is desperate to eat by 7am or ELSE, try to wake up a bit more before eating and taking more meds, plan out my day, get stuff ready to go if I have a medical appointment and I usually have at least one a week (the next 3 weeks I have 2 each week–goody gumdrops for me), pull myself together meaning exercise to the best of my ability to wake up my body, take a shower which is an event in itself and can take a lot out of me, not to mention brushing my teeth (an electric toothbrush is best so I can save my hands and arms and their energy), get dressed, try to make my hair look presentable (thank goodness for purple short hair so it’s already kinda cool and easy), pet and love my Cleo Kitty who always needs extra love and well so do I, make sure I wear my hat to protect from the sun, wear my sun protective jacket or at least a shirt with longer sleeves, get Cleo ready for me to be gone, make some sort of business calls if I have the chance, try to sit and rest here and there because it’s a lot to ask my body since so much activity has already happened, try to maybe wash the dishes or at least some of them, sort through any weird symptoms I’m having and do my best to take care of them, and the list can still go on.

THAT’S JUST THE MORNING EVENTS…no matter what even if I’m feeling crazy fatigue–I may go back to bed but what if I can’t because I have an appointment?  I’ve gotta get through it.  I’m so exhausted from thinking about my morning and writing about it that I haven’t even written the next parts of the day where I have to keep myself in check and have all my meds sorted out to take and make sure I take them on time and have meals at good times or I end up feeling worse.

And there’s always laundry to be done.  Can I do it today?  Should it wait?  What if we need underwear?  (Hey, I’m being honest).  And what about groceries?  What about the “What abouts”?

What’s the real priority?  There’s always some sort of life that needs to get done and if I let it go it’s still there tomorrow and I have to try to be ok with not getting it done YET.  I’ll admit, that is one of my biggest struggles.  LETTING SOMETHING GO UNTIL TOMORROW…OR ANOTHER DAY…OR ANOTHER DAY…

YET SOME THINGS CAN’T WAIT…

I’VE LEARNED TO LET GO OF A LOT BUT THAT DOES NOT MEAN I’M OK WITH IT.

So life just keeps on happening.  I keep having multiple sclerosis and lupus along with all the other syndromes and issues and the world keeps spinning.  Thank goodness for choices but it’s still so hard sometimes.  I really have eased up on so much in my life and with my expectations but it takes a strict way of thinking that I really can’t get lazy with too much (sometimes it’s a wonderful thing but I can’t let go of it too long or I lose myself again and may go back to pushing too hard)…

SO I GUESS I’M STILL LEARNING…

THESE CHRONIC ILLNESSES I TELL YA…

There is just so much I can say about them and so much I don’t have the words or energy to talk about.

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HOLY MOLY DECEMBER!

I write the title that way because December seemed to have pounced in LIKE CRAZY and just keeps going that way!!!

Decembers are always hard I think for most of us.  Not only is there usually some sort of Holiday we celebrate (Christmas here)  but then we end up getting thrown end of the month and year deadlines, new enrollment deadlines and choices, extra bills that come out of nowhere, and extra LIFE just KEEPS ON COMIN’!  And it’s NOT JUST BECAUSE OF THE HOLIDAYS!

Sure the Holidays have a tendency to drive me wacky.  It all gets magnified.  Ain’t that the truth.  I get what I call H-A-D or Holiday Affective Disorder.  It’s like a switch turned on the day after Thanksgiving (interesting that it wasn’t the week before–guess I’m making progress) in my brain and the CRAZY ANXIETY started about HOLIDAYS HOLIDAYS HOLIDAYS and this has to be done and that has to be done and and and…SOUND FAMILIAR TO ANY OF YOU?

So I had to really work on BREATHING (Tends to help.  I mean who knew right?), meditating, keeping perspective, talking it out, staying in the moment, one day at a time and all that hoobilly doobilly stuff and it helped A LOT.

BUT THEN, I received word (ONLY BECAUSE I SAW A DISCREPANCY IN A PIECE OF MAIL AND HAVE LEARNED TO ADDRESS THESE THINGS) that my Private Long Term Disability Entity that was connected with my previous employer (and who I HAD BEEN PAYING FOR SINCE I STARTED 11 YEARS BEFORE I LEFT), had TERMINATED my DISABILITY COVERAGE and NO ONE HAD TOLD ME ABOUT IT!  AGAIN–the ONLY REASON I FOUND OUT EVEN WHEN I DID WAS THAT I CALLED AND ASKED ABOUT A PIECE OF MAIL I HAD RECEIVED THAT MADE NO SENSE TO ME…

BY TERMINATING MY DISABILITY COVERAGE, THAT ALSO MEANT THAT MY HEALTHCARE COVERAGE CONNECTED WITH MY OLD EMPLOYER WAS ALSO TERMINATED BY THE END OF THE MONTH.  I found this all out the last week of November 2012.  I ended up calling the Director of the Benefits Office at my old employer and asked her about it.  At this point I was so enraged and furious I could hardly function.  She was very upset with this entity for giving no notice to me and to them because it would be a mess because they terminated my coverage and no one knew till later in the month and MY HEALTHCARE COVERAGE WOULD HAVE TO END BY THE LAST DAY OF THE MONTH…if I recall correctly I learned I lost HEALTHCARE COVERAGE 2 DAYS BEFORE IT WAS DONE.

NOT COOL.  WORDS CANNOT EXPRESS MY PANIC, MY FRUSTRATION, MY ANGER, MY FEAR, MY RAGE, and there were so many feelings that I just could not even express in words.  There are not enough words to describe feelings like this in the English language.

THERE IS A BLESSING HERE THAT I HAVE NOT MENTIONED.  I had been enrolled in Medicare (my Pride has a hard time with that since I’m 35 but now I know it’s an absolute BLESSING so I’m learning to accept it and fast) automatically by Social Security Disability and since they were covering me retroactively as of December 2010.  (Social Security Disability is starting to clean up the mess I was in with them.–thank goodness because that would’ve really hurt at that point).  After 2 years you’re automatically eligible for Medicare when you have Social Security Disability.  So there it was.  The TIMING WAS PERFECT.  On November 30th I LOST healthcare coverage with my old employer.  On December 1st I STARTED Medicare healthcare coverage.  CRAZY PERFECT TIMING…

HOWEVER THERE IS A REALLY BIG TWIST that has not been mentioned.  A couple months back the Director of Benefits at my old employer had told me to go ahead and keep Medicare as my Primary and that they would be my Secondary.  She also told me that I DID NOT have to sign up for Part D–Prescription Coverage–separate Plan with Medicare–because I could stay with the Prescription Plan Healthcare Coverage with my old employer Healthcare Plan.  SOOOOO, there I was on December 1st with Part A and Part B covered with Medicare and NO PRESCRIPTION HEALTHCARE COVERAGE….

SOOOOOOOOO UNCOOL to say the least of descriptive words possible…

It’s already hard to pay out of pocket for medications and we all know it gets expensive and fast and that’s even with coverage and co-pays.  However, my MS medications have ALWAYS BEEN AND SEEM TO CONTINUE TO BE RIDICULOUSLY EXPENSIVE (even after 10 years of diagnosis) and the one I’m on right now is still a bit harder to be on and requires a lot of extra attention from the Healthcare system because it’s still so new and Man is it EXPENSIVE!  BUT it has helped improve my MS health immensely so it is worth it.

And so I’ve been trying to pull myself back up after being pulled under by a bunch of entities that seem to be making an effort to make it as hard as possible to be DISABLED.  UM…PSSSSST…IT’S ALREADY FRIGGIN’ HARD TO BE DISABLED.

I DID NOT ASK FOR MULTIPLE SCLEROSIS AND FOR IT TO BE CHRONIC.

I DID NOT ASK FOR LUPUS AND FOR IT TO BE CHRONIC.

I DID NOT ASK FOR ALL OF MY OTHER CONDITIONS THAT GO ALONG WITH CHRONIC AUTOIMMUNE DISEASES AND FOR THEM TO BE CHRONIC EITHER.

I DID NOT ASK FOR TONS OF MEDICATIONS.

I DID NOT ASK FOR THEM TO BE EXPENSIVE.

I DID NOT ASK FOR THIS MANY DOCTORS.

I DID NOT ASK FOR THEM TO BE EXPENSIVE EITHER.

I DID NOT ASK FOR ANY OF THIS.

I’m just me trying to be me and live my life the best way possible.  I’d also like a chance to RECOVER which is really hard to do when not given a break unless I give myself one.

That’s the thing.  I’ve had to schedule time to take more breaks, to try to have a social life, to get domestic life taken care of, to take care of our dearest Cleo Kitty who is doing so well (now that she’s been UN-DIAGNOSED WITH CANCER–MIRACLES DO HAPPEN!), to try to be creative, to try to participate in life-y things, to try to be doing anything I can to keep a smile on my face for the Holidays without forcing it all and pushing through it, to exercise and keep on walking (and I’m getting to 250 days in a row very shortly), to spend time with my husband, to breathe, to live, to have fun, to JUST BE…while LIVING THE LIFE AS SOMEONE WITH DISABILITIES who has to be as PROACTIVE as possible at all times with self care which also includes my eating better things for the Nahleen Diet, getting fresh air, being outside, brushing my teeth, taking a shower (still too much of an event), following up with doctor appointments, addressing colds and other infections immediately, taking care of this newly diagnosed IBS (I do believe we might be getting somewhere but medical tests are being done and those too take time), writing, trying to get more sleep and rest, WHATEVER IT TAKES FOR ME AT THE TIME.  Oh and the symptoms are still coming and going and I have my hard days and not so hard days.  Fatigue is still one of my main issues.  It’s not like they’ve gone away just because this ENTITY has decided THAT I CAN WORK…(Don’t get me wrong.  I’d LOVE TO WORK–who knew I’d say that.  IT WOULD BE A LOT EASIER THAN GOING THROUGH THIS DIFFICULT PERSONAL JOURNEY…)

My life is big–no it’s HUGE lately BUT I’m getting through it with lots of help, love and support that I’m learning to give myself more, from my friends, my family, so many loving people I know in spiritual groups who hold me up, social media, some people I’m getting know at the Pharmacy (sad but true), my awesome husband, my Cleo Kitty and you know what–it’s OK right now.  In fact, I let myself sit with that big blow when it first hit and tried to PROCESS THE TIDAL WAVE OF THE HUGE BLACK BLOW THAT NOT ONLY HIT ME FROM ABOVE BUT THEN TOOK THE WORLD I THOUGHT I WAS STANDING ON RIGHT OUT FROM UNDER ME…

The sitting helped.  THEN IT WAS TIME FOR MY OPERATION NAHLEEN HAIR RE’DO which is much shorter and purple and I LOVE IT.  It is THE NAHLEEN ‘DO!  That helped rebuild me A LOT. I had felt so depleted of everything.  I really had hit a bottom and was floundering.  They say you’ll always get more rope if you feel like you’re at the end and well, if there was any, it was frayed and withered away and may have broken had I grabbed it.

And as TIME HAS PASSED I’m picking myself back up with the help of the Holidays ACTUALLY (sure they’re stressful but I’ve learned over the years to just go with it and whatever happens happens–of course I haven’t felt this way EVERY DAY but I’m trying).  I baked 1st PRIZE WINNING COOKIES for a Cookie Swap Party last weekend that are my tradition to make every year and I think have been for 25 years or so and I still can’t believe I won.  That I even felt up to making them, going to the party, staying and then that I won was so awesome!  Really meant a lot to me in so many ways.  I was IN IT.  It felt so good to be creative and use my hands.

This week I dealt with a TRUE ANGEL (fully believe this) at the MS Medication Company Patient Program who helped me so much.  She stayed calm and knew exactly what she was doing.  I was so worried about how to get my medication without any insurance right now and she made sure I had enough for at least the next month.  She was the one following up with me.  Amazing professional ethics, consideration and respect.  I am truly grateful for her.  It was hard enough to start paying out of pocket for the other medications I need this month.  BUT it is all being recorded for the future.  I am working on RESEARCHING (HOLY CRAP IT IS SO COMPLICATED AND THEY MAKE IT SOOOO HARD TO GET A REALLY GOOD MEDICATION WITH MEDICARE–THEY REALLY DON’T WANT US TO BE ON MEDICATION NOW DO THEY?) this Part D Prescription Plan stuff and I have to take it slowly because it’s stressful and exhausting to look at and I need to know what I’m dealing with.  I was given NO LEAD TIME TO FIND THIS STUFF OUT.  INFURIATING.

I was also given a probably potential silver lining with my husband’s healthcare plan at work on Friday.  I thought it would be too expensive to do and got all confused about how it all worked and then he called me last minute and we went over it piece by piece to see if it would be worth it for me to be on his plan and I BELIEVE IT ABSOLUTELY IS and I ALSO BELIEVE I’M OFFICIALLY GOING TO HAVE A SECONDARY HEALTHCARE PLAN NOW which also probably means (with a little more research) THAT I DON’T HAVE TO DEAL WITH PART D-PRESCRIPTION COVERAGE WITH MEDICARE which is a TOTALLY AWESOME thing because my goodness the HEADACHE.

AND YES.  I WILL APPEAL THE DECISION THIS PRIVATE LONG TERM DISABILITY PLAN MADE ABOUT TERMINATING MY COVERAGE.  That is coming.  I am very resentful that this must happen but I need to fight not only for me but for others out there who don’t have the support I have and well THEY JUST CAN’T DO IT (I have those days quite a bit but I am too stubborn to let them win this one.)  I have a bit more to pull everything else together with my healthcare coverage and THEN LET THE APPEAL GAMES BEGIN.–As if I really wanted to do more work with ANOTHER APPEAL.  AND AS IF THEY ARE GAMES…

SO TIRING AND DRAINING.  So tired of talking about how awful my health is and trying to prove it yet not being able to really celebrate the improvements that have occurred is so sad.  Sometimes I feel like I have to be at least 2 people…

MS IS ENOUGH FOR DISABILITY.

LUPUS IS ENOUGH FOR DISABILITY.

MS AND LUPUS ARE DOUBLE ENOUGH FOR DISABILITY.

THERE SHOULD BE NO QUESTION.

**Anyway, I wanted to make sure to write and let you know that you are all on my minds all the time.  I look forward to less busy times ahead (hmmm…will it be so?) without end of the year stuff and the holidays so that I can back into writing more regularly.  Just writing this Post has helped me so much.  I was going to post a quick note to say hi and stuff and then it all came out.  Thanks so much for reading.  By the way, it seems I have New Followers.  WELCOME.  What a year it has been with this Blog.  *March 2013 will be my 1 YEAR ANNIVERSARY OF WRITING THIS BLOG.* I am so happy and honored to have you all here on my journey with me.   And I so hope you are all doing okay.  I know it has been a rough year for a lot of us and I wish you all the best.  Please feel free to spread the word about my Blog, comment on my Posts, visit me on my Facebook Page that is supposed to be a supplement for this Page called “Nahleen.com” at http://www.facebook.com/Nahleencom, also on my Public Timeline at http://www.facebook.com/nahleenblake, and on Twitter at http://www.twitter.com/nahleenblake!

Please whatever you do or don’t celebrate, I hope you have a wonderful end of the year if I don’t check in before then and may 2013 bring us all more peace in as many forms as possible!!!!

Much love!!!!!!–Nahleen

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AND…I’M BACK!!!!

Yes I’m here!

Dang DSL is back up and running and apparently so am I!

There’s a lot of life going on here.  There’s the holidays, doctor appointments, taking care of me (full time job), more disability issues that seem never ending and insecurity there because one entity terminated my coverage which then cut off my healthcare coverage, but then I happened to go on Medicare (having pride issues about going on that at age 35 but at the same time so GRATEFUL to have the coverage) LITERALLY the next day after being cut off, yet at the same time there’s a whole Prescription Part D of the Medicare coverage that I had not enrolled in because I was told by my healthcare people not to worry about that since they would cover the Prescription part of my healthcare, but then that couldn’t happen because they had to cut me off due to the disability entity being connected to my work and they gave me no time to sign up for that part which I believe is illegal, so now I’m trying to find the time, energy and patience to sign up for a Prescription Plan and have to pay out of pocket for my medications until I do so and I HAVE NO IDEA HOW I’M GOING TO GET MY GILENYA MEDICATION FOR MS BECAUSE IT’S SO EXPENSIVE (that’s tomorrow’s priority call), I’m also trying to appeal all of this but before I do that I need to be able to even get through reading the horrible termination letter from this disability entity that is so upsetting for so many reasons, so I’ve been dealing with feelings and emotions, picking myself back up, getting a new hairdo that I plan on showing pictures of very soon, dealing with an undiagnosis of cancer for our dearest Cleo Kitty yet she still has a very sensitive immune system and we are trying to balance all those issues, along with my newly diagnosed IBS acting up because the treatment just isn’t cutting it, along with having multiple sclerosis and lupus, having a really neato husband who’s always there and supportive and trying to spend time with him while he’s making changes, trying to have a social life, doing my best to stay sane, be in touch with lots of people, trying to rest and recover and it goes on and on.

I made that a MEGA RUN-ON sentence because I think it helps to see just how OVERWHELMED I am and how big my life is.  Sure there are a lot of really great things going on but they are intense and I truly believe I’ve been on a spiritual journey for quite awhile that is really helping but a lot of work.  HOWEVER, there are some really seriously scary things going on with this current healthcare insecurity and financial insecurity and a lot of feelings of anger yet at the same time it’s the IBS that’s acting up and my MS and lupus have calmed down.  BUT I have to be careful of that because that could change at any time especially if I don’t do all the self-care I need to do and get enough rest.  And hence things get done when they get done and that’s how it is.  As a person who is a Type A personality at the core and has had to really unwind that over the years, it still hits me every time and I struggle with it trying to get myself to just calm down.

It’s hard to PRIORITIZE right now but I’m taking it moment by moment and breath by breath.  Day by day is the best I can do.  By the way, did you know that BREATHING and taking extra BREATHS helps???  I mean who knew?  I’m really finding out that I hold my breath way too much so I’m trying to work on that.

WOW!  I’m tired just from writing this.  My Cleo Kitty is calling me.  She beckons quite often these days.  Gotta love her.  She is quite a spirit.

I hope you are all well and that I can write more soon.  Take care and I hope you can remember to breathe during this time of the year too.  Turns out it’s quite important to do…

 

 

 

 

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POSITIVES!

Hello!  Happy Weekend!

Today has been much better than any other day this week!  2 VERY COOL POSITIVES have happened today!

1. I looked at my bank account and was taken aback because there was A LOT of money in there!  It appears that Social Security Disability has FINALLY paid me what they owe me!  I don’t have any written confirmation yet that helps me do the calculations to make sure this is accurate BUT it’s a HUGE step in the right direction!  IT IS ABOUT TIME!  I have waited almost exactly 2 years for them to get it right.  Such a long, arduous and stressful process.

2. I saw a new Gastroenterologist for a 2nd opinion yesterday and it was a really refreshing appointment.  It is so nice to be listened to and to be able to ask all kinds of questions while the doctor PATIENTLY reacts.  I don’t get PATIENCE very often.  Anyway, we THINK we may have some answers about how to help me so I am experimenting with a new treatment and a new theory altogether that should help.  And you know what?  It’s been almost 24 hours since I started it and I’m definitely feeling some RELIEF.  I’m not all better or even close to that, but it was so nice to be able to feel more like MYSELF today and function so much better.  I almost felt like a different person than I have been in quite awhile.  I hope this continues but for now I’m happy with whatever relief I can get when I get it.

Alrighty.  Gonna jump off.  I’ve done way too much today and still need to exercise before having some dinner.  And it’s cool to think that dinner might actually be more than toast.  Thank goodness.  There’s only so much toast a person can eat.  And hey, maybe I’ll even be able to eat my 3rd meal today without having my digestive system freaking out on me the second any food touches it…

SOUNDS GOOD TO ME!!!

Hope y’all have a good weekend!  I’m looking forward to mine!  It’s nice to have some HOPE and actually FEEL it!

 

 

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Happy Halloween and Health Update!

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!

 

 

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Now Hiring for the Nahleen Blake Medical/Disability Department

I need an assistant.  Actually I need a Department.  I wish.  If only…

This is all too much and I can’t keep up.

I can only do the best I can.

I spent the morning getting sucked up into the vacuum of disability and medical nonsense.  It didn’t take long.  First I called the Private Long Term Disability company I deal with to talk to the Finance Guy about money I need to pay them back from what they say they overpaid me.  He was a very nice guy which always helps the awkwardness and of course wouldn’t you know the UPS guy knocked on the door just as he called and I had to answer the door and be on the phone with this guy at the same time.  Not so professional but oh well.  I am only me.  I am only one person.  So now I need to hire someone to answer the door for me.  And then shortly after the UPS guy came my Cleo Kitty was insisting on getting attention and doing anything she could to get in my way.  AND I need to hire another person to pet my Cleo Kitty or better yet to talk to this Finance guy so I can pet Cleo Kitty instead.  Back to the Finance guy I was on the phone with, he passed off the responsibility of giving me any real answers and told me to talk to my Claim Manager.  Oh great.  Here I go.  Getting sucked into the crazy abyss that is the never ending calls of bottomless pits of not taking responsibility and sending me off to call someone else…and someone else…and someone else.  Perhaps they don’t want their money?  It’s hard to tell.

So I called my current Claim Manager.  You see, she’s the 3rd one I’ve had on my case so far in just over a year with this company.  It’s hard to keep up with who’s next on my file.  Of course she didn’t answer so I left her a message.  Will she call me back today?  I doubt it.  She only works till 3:30pm and has a habit of not calling me right back unless she needs something of course and then she hounds me.  Oh well.  The ball’s in her court now.  I gotta try to let it go.

And then because I’m a glutton for punishment I called the paralegal at my attorney’s office to see if she knew anything about the status of our newest action regarding Social Security Long Term Disability.  It’s only about the 5th time I’ve called her in this round of trying to get a hold of her so I wasn’t sure I’d actually get her in person and was getting ready to leave a message.  I was surprised to hear that I might be able to talk to her but wouldn’t you know she put me on hold for what seemed like forever.  Now I need someone to be on hold for me.  She FINALLY picked up her line and told me she JUST talked to a Supervisor at Social Security who told her NO ACTION had been taken regarding my financial issue and to re-fax the Request For Action to another fax number and they’d see what they could do.  Yeah.  Om.  When is that exactly?  It has been almost 3 months since we sent in the first request for action.  What’s the financial issue I have with Social Security?  Well, they have been underpaying me what I’m entitled to for benefits.  That’s the short and simple version of the story.  It’s too complicated otherwise.

So once I got off the phone with the paralegal I wanted to scream but I kept my composure and put my doctor’s office mentality on and called my Pulmonologist to find out if they had received my Home Sleep Study test results yet since it’s been over 3 weeks since I did the test.  The guy who answered said he saw nothing in my chart and was not going to do anything about it until I asked him to call the company and see where the results were.  He actually did budge a bit and told me he’d try to call sometime today or tomorrow but that Mondays and Tuesdays were their busiest day at the office.  OK.  What’s their point?  It’s not like I had the test done last Friday, I had it done 3 Fridays ago.

And continuing on with my list of phone calls, I called to make what will probably be my last Physical Therapy appointment for this round and was told I should really call by the end of the week to get a better time and that right now I can only get later in the day on the day I want next week.  Sure.  I’ll remember that too.  In fact, I’ll have my assistant make sure to call about that.  OH wait.  I don’t have an assistant.  Hmm.

And lastly of the medical/disability chaos rigamarole today, I called my acupuncturist to set up acupuncture and acupressure for next week and that went really well and yay I got appointments set up!  Phew!

Now I’m exhausted.

You see, that’s not all I have to do today.  I still need to exercise, shower, organize paperwork, pay bills, do some laundry–it’s cool to have clean clothes sometimes.  But what about the Recovery part?  I still need to schedule some time to rest and recover so that perhaps one day I not only feel better but maybe I can get better enough to get out into the world  and not run myself down with this medical/disability business crapola.  I’d like to work again one day.  That’d be cool.

To top it off, I’m STILL RECOVERING from my bad medication episode from last Wednesday.  That is almost a week ago.  I feel like I take 2 steps forward and 1 step back.  Yeah.  It’s a positive thing that I don’t go 3 steps back or something but for goodness sakes, I want to feel better than I do now.  I want to be back where I was physically and mentally before I took that dang pill.  One pill can change everything.  Ugh.

So now I guess I better stop writing so that I can take yet another break and get on with my day.  Here’s hoping the rest of my day is better.  How has your Monday been?

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