I feel like I spend so much of my life on the inside looking out.

I sit here in these three rooms in our little apartment we call our home and I look out our two windows. I wonder about people. I look at the clouds that I love so much. I watch dogs. I see birds flying. The sky is always there every day still. It hasn’t fallen yet. You never know. It could any day now. It is 2020.

Anyway, the past couple of years my body has told me what to do. I have been dealing with a diagnosis of Lyme Disease and Co-Infections, including Bartonella and Babesia, and the treatments have demanded all of my attention. They had made me hypersensitive to everything to a point where I couldn’t do anything without feeling vertigo and acute nausea and almost vomiting unless I kept my life very slow and basic. I have had to spend so much time at home and not do much of anything, but watch my surroundings. I have since been improving little bit by little bit, which is why I am able to write some more, but I never know when it will hit again. I have a feeling I will get more into that in another post. During this time of trying to kick lyme disease’s butt I have been on the inside looking out.

And then the pandemic hit. And I’m immune-compromised. I have to be so careful where I take this crazy immune system of mine because it needs a lot of help and support and this virus is so contagious. My doctor who I trust more than most people these days does not want me to go out if I can help it. The reason being that if I do go out and I catch this virus, it will probably hit me very hard, I will likely be on a ventilator and I will probably die. This might be difficult to read. You might even want to deny it. I know I have. It’s kinda hard to write, but dammit I’m here to tell the truth. It’s a rough one to face and one many of us who are immune-compromised have to deal with. However, it doesn’t mean that we should be kept quiet and in the corner either which is why I will be speaking up more. I’m here to give us all a voice. And I stand here, I sit here, I walk up to the two windows, and I stay on the inside looking out, wondering when the world will pause just a bit more so that the virus doesn’t have so much freedom.

So I watch people go out all the time and I dream of doing that myself now that I actually feel up to doing it a bit for the first time in years…and I can’t go out unless I absolutely have to. We live next door to CVS and Trader Joe’s and I used to at least take little jaunts there before my lyme disease treatments when my body would let me. I really thought that I would be able to do that again this year before March when the pandemic hit, and as I was starting to feel my body let up on me a smidge and nope. I can’t. It’s not safe for me. People are not keeping their distance. They’re not wearing masks. They’re not staying home to stop the spread. I want to go for a walk. There’s lots of people walking. They all seem to have different ideas of when to wear masks and when not to wear them. I could go on.

Thinking back on 18 years ago, I was admitted to the hospital because they thought I had a brain tumor or something just as serious (thus began my health journey that I am still on today). I can remember standing in that room at the window and looking out. It was right around the time when day started changing to night and I could feel my life and my world shifting. I wondered if it was that I felt like a caged animal, but then I knew that wasn’t it. Those poor souls didn’t have the choice to escape. I could have left the room and the hospital if I wanted to. If I remember correctly, I didn’t even have an IV in my arm and I wasn’t hooked up to anything. I think they were just “observing” me at the time, whatever that meant.  There I was, with the back light of the lamp in my room, barely able to see the reflection of uncertainty on my face on top of my silhouette, as I stood there on the inside looking out. I still can’t answer myself about what that feeling was, except to say that my intuition was kicking in and I knew my life as I knew it was changing forever.

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So that’s where I am right now. I’m really feeling like I’m on the inside looking out and that is why I have changed the Overall Title of my Blog to “Nahleen.com: On The Inside Looking Out”. I have a lot to share and I hope you will continue reading as I write more posts. Thank you!

Is it really me? Am I really writing a new blog post after how many years of absence? I sure am. I hope I start to write more, but for now I’ll focus on this first one. I’m feeling pretty rough around the edges with this whole writing thing. What’s a word? Do people even type actual words anymore or is it just emojis?

Anyway, some of you who have returned may have noticed that the name of the Blog is a bit different. I’m playing around with it. More will be revealed about that title as we take this journey together. I have had A LOT of time to think.

And think.

And think.

And I’m going to burst if I don’t start to get some of these thoughts out!

I am a writer in my soul. I feel it in my cells and I have had so many interruptions throughout my life. Some make sense. Some are excuses. Yet I always find myself back in front of a keyboard or with a pen and paper.

And things need to be updated on here too. My picture is old. The About Me Page is old. But piece by piece I will pull it together and I hope to share more of my thoughts with you. So please stick around and keep checking back.

Yay! I wrote a post despite health challenges. I’m so excited. This is a big victory for me!

Oh, she has a “fancy” phone, whatever that is, so she must have money. Therefore, she cannot complain about having no money. She cannot go on disability. She cannot ask for money from the government if she needs it. She cannot get food stamps. She cannot cannot cannot. WHOA! Hold on! She could just have been connected to a good phone plan from a long time ago, been offered the phone for free as an upgrade, been given the phone as a gift, bought the phone on ebay, the list is endless. The phone has nothing to do with anything! I see this kind of post so much and it makes me sick to my stomach. Mind your own business. In all that time you were judging somewhere like on Facebook, you now need to explain the time you used on Facebook and please tell me what you were using to get on Facebook. Was it a computer? What kind of computer? How much did you spend? Why did you spend that kind of money on that? You should have been spending that on something else? I’ll tell you what you should have been spending it on. You must have money if you have a computer. Did you use a phone? What kind? You must have money. Where do you get all your money? Have you ever complained about money? Something tells me you have. It’s the nature of the beast to do so. So answer my demands. Tell me everything. What do you have to say for yourself? Now how does it feel?

Yes, I sound angry. I am angry. I was diagnosed with multiple sclerosis, lupus, IBS, migraines, numerous other ailments and I’m on the road to another major diagnosis very soon. I had a Private Disability Company judge me because I could write a blog, this blog, and stop paying me because I could write a blog post sometimes so I must be able to write. I have not been able to post about this and it has been years since this happened. Can you imagine? They made me feel so horrible about myself that I have been pretty darn quiet since? How dare they? Did they ever ask what it took for me to write? How much it hurts my hands and arms every time I type? How hard it can be for me to think sometimes and even put words together in a full sentence? How fatigued I’ll be after I write this? How I have been in bed all weekend and missing family time with my husband and my kitty because the threat of rain has been so bad in the atmosphere and my body is so sensitive that I can feel it so much and I have felt so incredibly terrible? That writing a blog has nothing to do with working a full time job, especially the one that had me go on disability in the first place? That leaving that job was one of the hardest things I have ever done in my whole life? That it broke my heart to leave my work family, call in sick one day and not know that I was not coming in ever again? That I never got to say goodbye to so many people I care about? That I still dream of that place and all of those people? That I still grieve over not being able to work? That I just want to wake up one day and feel good?

And I am on Social Security Disability. Yes I am. I will tell you something. It does not pay much and yes I am grateful for it. Please do not let the government lead you to believe that people are mooching off of the government with it and having spending parties with it. There is so much talk about it right now. Listen to me and other people who are trying to live on it. First of all, it is not an entitlement. I paid into this the entire time I worked. It is not free. It is my right. How dare they say otherwise? We all pay into this. We all have a right to it. When I made the ridiculously hard decision to go on disability, they made me wait six months, then they denied me, then I appealed, then I waited so much longer, then I had to go to a court hearing and wait to see the judge only to learn that “the judge wasn’t ready to see me” (can you imagine?????) so I had to wait another five weeks to try again to appeal in front of this judge, thankfully I had an attorney’s office who was very thorough and had me very ready and it wasn’t a long hearing, I waited another two months at least for her final decision that was finally an approval, then I waited another two months at least for social security to pull the paperwork together, they paid me retro pay from when I first applied (yet I had no compensation until then which was nearly two years) and then they paid me only a percentage of what I had been paid, which was not much, from my job when I was employed.

I’m going to tell you something else you may not know. Two years ago, at the start of the New Year, Social Security’s rate went up I believe 3% to cover “cost of living” as they call it which cracks me up. Last year, it did not go up at all. This year it went up, 0.3%. Huh? What is that amount? That is basically nothing. I saw no increase in anything. I am insulted to be honest. Why did they even bother? Did they think it would look bad to give us 0% again? Come on! But money can go to wars and defense and blah blah blah.

Look, I’m not perfect. I judge, question and assume too but I’m really trying not to and I like to think I’ve gotten better. I’m a work in progress.

I read something about I and We and Illness and Wellness today that I thought was really cool. Can I remember it? Nope. Will I get the words right? Probably not.

It stuck though. It reminded me I’m not alone.

I’M NOT ALONE.

I seem to need three word phrase reminders lately. Interesting.

Huh. Guess what? I’m not alone. You’re not alone. We’re not alone. We are all in this together. We can’t do this alone. Life is friggin hard. Lately I keep asking the Universe to just let up on me already. Seems like a lot of people I know feel the same way. How about you? How’s your life going? And I don’t know about you but all those positive saying BLAH BLAHS do not help. Perhaps that’s one way we all try to help each other but I gotta tell ya that they don’t help me at all.

-WHAT DOESN’T KILL YOU MAKES YOU STRONGER. Whatevs. I’m now stronger than Wonder Woman. What’s your point?

-GOD DOESN’T GIVE YOU MORE THAN YOU CAN HANDLE. Whatevs. I think the person who came up with that had like THE worst day ever and just couldn’t take it anymore and the only way they thought they could make it is to come up with that nonsense. I mean really. I have my own feelings about GOD and Spirituality and I’ll let us all have our own feelings and opinions and what I believe is that I would not be punished by what I believe. How awful would that be? NO THANK YOU.

-THIS TOO SHALL PASS. I will not even bother with Whatevs. Come on now. I AM STILL WAITING FOR MS, LUPUS, MIGRAINES, IBS, DEPRESSION, ASTHMA, ANXIETY, ALL THE PAIN AND DISCOMFORT TO PASS……………………………………………………………………………………..

…….STILL WAITING.

So I think you get my point. However, we can help each other. When I was first diagnosed with MS, (multiple sclerosis) in December of 2002, I took so much of it on my own. With the help of therapy and A LOT of time and learning the hard way, I have started chipping away at my armor around myself and reached out to others and asked for help and also found that the more I reach out and don’t keep it all to myself, the better off I am. I can’t keep it all in. I’ll burst!

AND BURSTING NAHLEENS ARE MESSY!

So I am trudging through my own experience and it appears to me that I do better with at least a few others by my side and together we all support each other. It’s really cool. To know we’re not alone is the best. My illnesses are very isolating and lonely even when I have people in my life. And I am blessed to have so many wonderful people in my life and and a great Support System! I get stuck in my own body. It’s so hard to be social. I’m so distracted by my symptoms and the discomfort and I can’t be social very often, especially during the summer. The heat is terrible for all of my illnesses and the sun just sucks the life out of me with the lupus. So it does take effort to have people around.

To survive, I must not be alone for too long. I can be alone and regroup and have my quiet and get back to myself. That is it. Otherwise, being alone in my head and upset body is a dangerous place to be.

So it all comes back to what I said in the beginning and what started these thoughts. I and We. Illness and Wellness. So let’s see.

I and We.

Illness and Wellness.

I’ll try it with my own words. I betcha it’ll be just so much better. It’ll be a rough draft. Maybe you can help me out in the Comment section and we can play with it. I’d love for you to brainstorm with me. “I with my Illness cannot get better alone. We can help me find Wellness if I let you help me.” Hmm. Not too bad. Seems convoluted but you know, if it was the first time anyone had ever seen a play on these words or I had ever seen it I’d probably be like Hey! that’s not too shabby.

The one I saw was so much simpler. OK here’s this one. I think I’m onto something.

“Replace the I in Illness with We and I am closer to Wellness. I cannot get better alone.”

OOOHHHH. I like that one. For me anyway. I don’t think it’s what I read but this one is MINE. I like it. I’m keeping it.

OK. I’m satisfied. How about you? How would you have played with the words? Do you know the quote I’m talking about? By the way, any time you want to Comment please do. I really like to Interact with people on my Blog.

Oh my goodness. It’s not the middle of the night. Cool. I should go and rest. Today was a hard day. I DID NOT FEEL GOOD. Writing helped though.

Love you.

I’m not OK. There I said it.

I still struggle with admitting that I’m not OK. I’ve gotten so much better at being honest and telling the truth when I’m struggling and having a hard time. But as I write this now, somehow saying “I’m not OK.” feels really raw and vulnerable.

I’m not OK.

Can you say it?

Here try it. Even if you are OK, try it. Humor me.

Ready?

All together now in unison. Let’s clear our throats. Wiggle our butts in our chairs. Get our hands ready if we’re holding our phones and/or tablets. Shake it out maybe. Circle those shoulders in and out. If you have some carpal tunnel like I do, take some time to shake your hands out. Sure, crack those knuckles. Stretch a bit. Maybe go get a snack. Procrastinate a bit more.

OK. For reals now. I’ll put quotes around it so we all know when to say it.

“I’m not OK.”

How’d it feel? Maybe it’s just my issue. Maybe it’s all in my head. It very easily could be. I might be the only one in the whole world, heck the whole universe that cannot say those 3 words easily and really mean them. That’s the trick. Making them into a whole sentence. Making them REAL.

So right now, it’s great for me to write since writing is a part of me. It’s so good to get it out. However, I’ve learned over the years that I need to say whatever it is that’s bothering me so much OUT LOUD for it to lose its power. Isn’t that interesting? I always thought that something would gain power if I said it out loud.

It doesn’t. It comes out of my mouth REALLY BIG and then it dissipates into the air because I have to be reminded a lot that the Earth’s air is way too powerful to carry a little carbon dioxide coming out of my mouth let alone something that feels negative. And guess what? It’s just lil ole me. I’m not that powerful either. Yet I’m bigger than three little words that are true only to me, need to be expressed and then I get to feel them because they tell me I’m human and as humans we have the just fabulous privilege of feeling feelings.

Yay humans.

So now if you don’t mind, I’m gonna say, “I’m not OK.” to myself at least 5 times out loud. I’ll be right back. I won’t be long. You probably won’t even notice.

…………………

So I’m back. Did you miss me? Phew! I think that helped a bit. I feel a bit lighter.

I noticed a few things that happened. Well you know, I just had to do everything I told you to do to prepare like, situate myself in the chair, shake myself out a bit, and then I pulled away from the computer and tried to get into a bit of a quiet mode and detach a bit. I kinda meditated a bit too. And ha ha 5 times just wasn’t gonna cut it for me. I was so not listening to me. Nope. No way man. I lost count how many times I had to say it until I think I actually heard it internally in my body and then actually acknowledged it in my brain. I was owning it. I think when I was first saying it, my mind pushed back and the anxiety started and I DID NOT want to admit it and own it. But as I kept saying it, I could feel my muscle tension lesson and my heart beat start to calm down as the anxiety started to go away. I could feel myself start to accept that truth JUST FOR NOW.

JUST FOR NOW.

NOW: similar to MOMENT, PRESENT (at least in my understanding)

So that’s what it is. And that’s all it needs to be.

I’M NOT OK. JUST FOR NOW.

OR

JUST FOR NOW. I’M NOT OK.

Yeah I know. GRAMMAR ALERT GALORE!

Anyway, yet again I’ve learned that it’s OK to not be OK. I think I will need this reminder alI my life. I hope if it’s something you didn’t know, you needed to learn it, you needed it in some way when you read this, and that there are others out there struggling with it too.

In a world that PUSHES constantly for everyone to:

-PUT ON A HAPPY FACE

-BE GRATEFUL

-THAT ONLY YOU CAN BE HAPPY

-THAT YOU DECIDE TO BE HAPPY

-AND WE MAKE OUR MINDS TO BE POSITIVE ALL THE TIME

-(OH AND DON’T EVEN GET ME STARTED ABOUT “BEING STRONG”)

–To admit “I’m not OK” can feel like I am trying to fit through that really tight space on a bus, airplane, train, subway, at a concert, on an amusement part ride and the list goes on. You know what I mean? And I feel like “this really should be ok but WHY IS THIS SOOOOOO HARD?”

If you get me, I get you.

Love you.

I was not OK when I started writing this.

I’m getting better now. It’s all a process.

Thank you.

It’s 2016. My last post was in 2014. I guess some time has passed huh? So like how are ya? This is kinda awkward. I feel like I need to fill in some time or something.

But I just wanna write.

I have been playing around with the idea of writing on this Blog again for awhile. But we thought something was wrong with it and life, well life has been really getting in the way lately and this has not been the priority.

I’m still debating writing a Blog. I might write my Book. I think this will be good practice for awhile again. I came back on here a few days ago and read some of my old stuff and it was weird. I remember that Nahleen. I don’t think I’m here anymore. I keep changing. A lot’s happened but if you asked me what, I’d say I dunno. I think a lot of it has to do with acceptance. Acceptance of myself is a big one. Acceptance of my life. I wish that meant a big party and celebration but it’s not really like that.

I’ve dealt with so much of the STRUGGLE. Actually, I’ve dealt with a good chunk of the old stuff so much so that I thought I’d add more and find more help for myself and struggle some more. So here I am in the middle of the night like most nights trying not to think about meeting so many new doctors throughout August because the 2 main Specialists really aren’t enough. I want more in my life and I’m digging deeper. I WANT BETTER. That takes work. And my mind is mish mashing all over. I’m still wondering about lyme disease (yep that’s on the plate now too), the constant pin cushion I am, the summer symptoms, Cambria, choices, rainbows, parking cost, knitting, silver shoes, I need to sleep, UGH all the phone calls I have to make still, when will she stop calling me about billing, fun, why is my belly acting up again, do I really have MS and lupus,we need food, I’m so sad, I’m so relieved, oh thank goodness, wow those old pictures of me even from 5 years ago show me just how much more alive I look now I need to remember that, my hair needs to be RE-SASSYED but really WHY ARE ALL THE PASSWORDS NOT WORKING FOR MY EMAIL ON MY PHONE AND iPAD?!

Yet my back hurts a lot all the sudden and I could not wake up today and I feel yucky. Tomorrow I get to start a horribly inconvenient sinus rinse that I have to do all day…and I get to continue that daily for at least a month. I also need to see my therapist for the first time in a month. I’d love a “normal” life.

And I just wanna write.

Yet as I pulled this up to write just now I was gonna just close it and go to bed. I couldn’t stop myself. I was reminded that I wasn’t as fatigued the other day when I wrote some stories to people. It actually woke me up. I AM A WRITER. I need to state and be proud of it and accept it and not feel shy to say it. It is my TRUTH. For a couple months the push has been on to write again. One friend who also writes told me to just write write write (and said much more than that but I think you get the idea). That person inspired me more than they know. Then out of the blue that person shared their writing with the masses. And I was like well dang. I gotta get moving. Another friend just out of the blue told me the other night that I should write a book or a Blog in the midst of what she was saying to me and I was like, OK OK UNIVERSE I’ll write.

What I don’t like is the extra details on here right now. They are distracting me. I wanted to change my picture because it’s a very old picture of me and I don’t like it. But I can’t figure out how to do it. You’d think it would be easy. Then it asked me if I wanted to change another image and that seemed way too easy. Then it wanted to know if I wanted to add a “SLUG”. Oh I want to give a Slug all right. Not to Word Press though. And then later it will be “oh so good for me to add tags so people find me” and like me and Follow my Blog. Yeah. Another time.

I just wanna write.

In the meantime, Hi. I’m here. It’s August 1, 2016. Nice to see you.