Monthly Archives: November 2013

11 Years Ago…

I still grieve.

Or maybe I’m finally grieving.

I don’t know.

I thought I didn’t remember the exact day my life changed forever.

AND THIS MORNING IT HIT ME.

Sounds so hokey to say that. But those are the judges in my head saying that it’s hokey. I don’t think it’s hokey and so what if it is.

It was November 22, 2002. I was 25. I was moving full speed ahead. Sure I had gone through 6 months of extensive testing to try to figure out why the bottom of my feet were constantly tingling. Sure I had gone through many phases of FEAR about what could be wrong with me. Yet, EVERY test I had taken till then had come back inconclusive or all looked good.

So why would my first MRI be any different?

BUT IT WAS. IT WAS DIFFERENT.

I entered that hospital to get the MRI on the evening of November 22, 2002 and left a piece of me behind back there. I never did go back to that same area where I had it done to retrieve that part of myself. Not only was the MRI more terrifying than I expected but the LOOK that Technician gave me when I was FINALLY taken out of that God-awful tube made a part of me vanish in horror. In her eyes, all I could see was DEATH. It’s taken me all these years to find the right words to describe her look. That’s what it was.

DEATH.

I was 25. I wasn’t thinking about the END. I was thinking about the BEGINNING. This was it. I had just been a Production Assistant for a couple of short films, I was going to be an Associate Producer of another film, I was working 2 jobs to make some extra money, my full time job was in Television and I was gonna make it big no matter what it took. I had an awesome kitty and a wonderful boyfriend (who is now my awesome husband) and life was VERY UP. That was the reason I left my life in NH to go to LA right? I was gonna do this.

BRING IT ON.

Hmmm. I didn’t say BRING ON MS. Nope. That’s not what I meant.

That next morning after the MRI I was admitted into the hospital for 3 LONG DAYS of HELL. They thought maybe I had a brain tumor. No, maybe it was some kind of infection in my brain. No maybe perhaps, but probably not, but maybe, I had MS. I felt like I was living in a nightmare. My sister who was here visiting (poor thing–this was her visit. But the timing is not a mistake.)

After that it was a Thanksgiving family reunion that I don’t remember much of at all and RIGHT after that I was diagnosed with multiple sclerosis.

MULTIPLE SCLEROSIS.

Something REALLY was wrong with me.

4 Days after that I had my first FULL BLOWN EXACERBATION. No surprise.

All symptoms I could ever have ever, you name it, happened in my body.

AND…

AN ANXIETY ATTACK.

AND…

A HORRIBLE, MEAN, ABUSIVE NEUROLOGIST WHO SAID IT WAS ALL IN MY HEAD.

AND TOO MANY STEROIDS…

Still don’t know how I survived what I found out later was a major overdose of steroids.

AND MY LIFE AS I KNEW IT WAS OVER.

And yes, my life is getting better. BUT it is not how I pictured it would be. In a lot of ways my life is better than I ever thought it would be. I’m forced to live more in the Present. And the Present can be a wonderful place.

And I still grieve…

I grieve over that life I thought I would have BEFORE that terror-filled MRI night. I grieve more now over it because I guess I’m ready to.

And that’s where I am today. I couldn’t figure out what exactly that dark cloud was that had been following me all week and was almost suffocating me this morning. Every year I seem to block out just what day it was that this all happened over a decade ago.

AND IT HIT TODAY.

GRIEF.

and

GRATITUDE.

Both can exist at the same time.

I never thought I could make it past that night but I have. One day at a time. That’s all I can do. Sometimes it’s one moment at a time. And that’s what I’ll take today. One moment at a time is enough.

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“Should” Is a Dangerous Word

I don’t know about you but I have a lot of chatter going on in my head quite often. I’ve learned and been able to quiet it down a bit more but it’s amazing how loud it can get in there. My goodness. The things I say to myself. I used to be really mean to me and abusive and I realized that I didn’t like those bruises anymore, that I didn’t deserve them, so I have gotten in the practice of TRYING to take words and phrases out of my head that do me more harm than good.

“SHOULD.”

That word needs to be considered what is called a “bad” word. How often do I find myself “Should be” with the “Should be” because “Should be” is “Should be” and back and forth. It’s awful really. I set myself up on this pedestal and the expectations start. I expect more of myself than others expect of me. For goodness sakes. I mean I have multiple sclerosis and lupus and if I count what’s been happening the past few days, I’m also dealing with a sinus infection and have been sick from that.

ISN’T THAT ENOUGH?

Why does “should” even come into my Being. Why do I even let it in? I try so hard to take it out of my vocabulary. In fact, even writing this, I find myself wanting to write the word “should” in a sentence over and over again. But it always gets me into trouble.

If I act on the “Should Be”s then I am only going to get tense and stressed out if and when I can’t follow through. This became very clear to me again this evening when after a long day of crunching numbers, some rest, taking medications, taking care of my sickies, taking care of my Cleo Kitty, taking a lovely walk in the fresh cool air as the sun set, spending time with Corey and just living my life I found myself playing the “Should be” game.

ONLY IT ISN’T A GAME.

It’s always more serious and it is never fun. It says I’m not enough. It says that I’m not doing enough. I’m not good enough.

Well I have news for me.

THAT’S NOT TRUE. I AM ENOUGH.

SO NO MORE “SHOULD”.

And when I say it again to myself I gotta try not to be too hard myself about it and just try to stop myself and either reword it, trust that all is as it should be and/or tell those words in my head to go away. That they are no longer welcome.

As I said before, I’m getting better at it, at keeping the “Should”s away but it is very hard.

Since I didn’t act much on the “Should be”s today I am relieved to say that I am a bit better from the sickies. I’m also feeling a bit loopy and strange from the antibiotics and the mucinex but I’m not feeling sicker and more miserable so that is a plus.

Progress is a good thing.

I think I’ll write to the people who write the updated dictionary every year or however often they update it and tell them to take the word “should” out. What I do know is that in the Book of Nahleenisms, “should” is not included. In fact, the word no longer exists…

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Sinus Infection and Hope

Sinus Infection.

Infection.

Infection.

That’s what I feel like I’ve heard over and over again over the past few years especially. Perhaps I don’t hear it as much as I used to but for awhile I think I was just one big walking infection of one kind or another.

And today was no exception. The only difference is, I haven’t been to see a doctor about an infection for 8 months. I think I’ve hit a new record. If I’ve felt sickies coming they have been fought off by my own body and Chiropractic adjustments have helped a lot too.

So I called my doctor’s office this morning at 9am when they opened and couldn’t reach anyone till 9:30am. Turns out their phones were ringing off the hook for at least a half hour straight with people calling like crazy trying to get squeezed in for an appointment because so many people had the same symptoms I have had. They have had the puffy swollen face, the cough starting, the sinuses filling up, the fever, the feeling of the head being squeezed off, sneezing, etc. And I found out later from my Physician Assistant that most of these infections have started with allergies and become an infection. She also said that most of her patients have said it has hit hard and fast and feel like they’ve been hit by a bus. Well, yes, I kinda have felt like my head was hit by a bus actually.

Yes. Ugh. Ow. All that stuff.

I was miserable today. I’ve been in a funk and not feeling good as you all know by now. I tend to get really upset when I get sick because I feel as though I am sick enough with MS and lupus. I really don’t have anymore room for any other yucky symptoms and discomfort you know? I really don’t want to be sick anymore. I would love to get a break. I was just icky mentally and physically.

Yet as I drove to my appointment this afternoon I took a deep (as deep as I can when I have a tight chest congestion issue) breath and looked to my left at the ocean. I love this drive. I love the area I get to drive in to get to this doctor’s office. I love the area itself where it’s located. To be honest, it’s one of the main reasons I go to this doctor.

Anyway, I looked at the ocean and its sparkles and then looked to my right to the cliffs that so clearly mark PCH (Pacific Coast Highway) and I think it’s then that I found myself more in the Present again. It’s hard to stay Present when I don’t feel good. My head goes all over the place into the future, the past, backwards, inside out, sideways, and usually feels buried under bricks of ick. It was the ocean and the sunlight’s shadow play on the cliffs that struck me. There I was sitting in my car and feeling stronger than I have in awhile. I sat a bit more upright. I started feeling inside the rest of my body and realizing that this may be the first time I wasn’t completely overtaken by so many symptoms from all my ailments that I didn’t know what was bothering me. I just knew it all sucked. And I realized, I AM improving. I am feeling a bit stronger. This time I’m really going to the doctor to address the sickies. I don’t need to address all the MS, lupus, IBS and all the other symptoms that are completely overwhelming me. And for the first time in about 2 days I started to feel a bit more hope and positivity. That I’d make it past this.

I always find myself in this trap in my head. As if I’m never gonna get through the next wave of whatever is making me feel crappy. It feels permanent. Like I’m doomed. Quite often, though, the horrible wave passes and I pull out of that and go to the “normal wave” of discomfort.

But it was the ocean, the cliffs and sunlight that pulled me out just a bit. They gave me something to hold onto. And then as I talked to my PA at the appointment she helped me remember the progress I’m making and how far I’ve come compared to 3.5 years ago. She has always been there for me. She has coached me and encouraged me and also been able to take me seriously and with so much compassion. She reminded me that we are all human. That as humans we get sick. This is almost a normal thing to go through, this sinus infection. This is gonna happen. But she also acknowledged that yes it would be really nice if I could get a break. She knows how much I’ve been through.

So I’m now stocked up with antibiotics, mucinex, juices, water, tissues and anything else that will help me get better. I fought off this infection for 2 weeks on my own. THAT is a victory. This all still sucks but if I can pull my head out of the muck I can see where the hope is.

And as I’ve read before and I just love this quote:

HOPE: Hold On Pain Ends

It’s hope that keeps me going. So I will hold on.

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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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