Posts Tagged With: Pulmonologist

Reflection: It Started With An Emergency Room Sign

The sign with an arrow supposedly pointing where the Emergency Room was, still sat on the construction wall at the hospital. I balked at how there was still a missing building after all these years and just piles and piles of dirt being moved around.

WAIT. How long had it been, I thought? How long had I seen bulldozers at this site? I could feel my mind’s wheels turning. It had to have been before I became severely ill over 2 years ago and could barely hold myself up on the seat as Corey “rush drove” the car down Santa Monica Blvd. I remembered that same Emergency Room sign that faked us out. It wasn’t a sign pointing into the entrance, it was a sign telling us what street to turn on next–vaguely explaining the location of the actual ER. Talk about a let down. I have never wanted to find an ER so badly in my life. I felt as if my head and body were hardly together and I was so incredibly out of it and nauseous. I really didn’t know if I could make it any longer in a moving vehicle without vomiting. Little did I know, 2 months later I’d be diagnosed with lupus. CRAZY.–And after that I’d know the location of way too many doctor’s offices, where to get bloodwork, the best places to eat, the best places to walk, where to park, which building had which doctor, etc.

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THAT was 2 years ago.

Today, as I walked with a bit of a spring in my step down the street even after seeing that Emergency Room sign (I used to cringe and get a twinge inside), I thought about what my Pulmonologist had just said to me a few minutes before that at my appointment. After chatting for a bit, he started reminiscing about how I was 2 years ago. How I had such a hoarse voice, my sinuses were out of control with a major chronic sinus infection, I still had a deep cough that indicated I had a pretty chronic upper respiratory infection that just wouldn’t go away, I had horrible post nasal drip, my throat almost almost always hurt, I felt awful and was very low on fatigue and I could hardly hold my head up to look at him. Now after 2 years of a very strict, proactive and aggressive medical treatment plan (medications including antibiotics over and over again for months, ointments, sprays, taking all asthmatic medication away because it was irritating more than helping, sinus rinses every day, numerous breathing tests, rest, lupus treatment, and all of my other medical care enhancements, him always taking my calls within the SAME DAY, etc.), my voice is much better. I told him today that I thought my voice was still hoarse and he said it was nice to be able to hear me. He used to have no idea how I was able to even talk let alone breathe at all. And to think, I only saw him at first so I could make my Neurologist happy and he’d say my breathing was OK and I would be cleared to start taking the new oral multiple sclerosis medication, Gilenya.

The BEST part of the appointment came at the end. I am still BLOWN AWAY. Call me STUNNED. He said, “Call me if you need me. No need to schedule an appointment. I think we know by now that we communicate when needed right?” and I stumbled all over myself, even stepping back to regain my composure, and said, “Um, yeah. Yeah we do. REALLY? I don’t have to schedule an appointment at all?”. And he shook his head a bit and said, “Nope.”.

My mouth dropped and I felt like at least a layer of weight had been lifted from my shoulders. AMAZING! I wanted to run down the bleak and clinical hallway outside his office and yell to everyone (not that anyone was there) that I didn’t have to schedule an appointment. I had graduated–at least from one doctor anyway! In the past, he had always wanted to see me in a few weeks, a month, then 3 months, then maybe sooner depending on what was going on, then in 6 months (THAT WAS HUGE) and now this! An OPEN ENDED commitment! NO WAY!

I’m still baffled.

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So there I was taking my walk down the street after passing that Emergency Room sign and thinking about just how long they’d been doing construction on this building and WONDERING if they’d EVER get it finished and it all started coming back to me. Waves of awareness were flowing in. Flashes of the entire 2 years of good and bad and the journey I’ve taken. This isn’t necessarily unusual for me to reflect but the context was completely different.

I AM GETTING BETTER.

It’s slow. Holy moly is it slow–in my mind. BUT part of my journey was finding out that I was a major physical and mental mess and it was going to take a lot of patience (and still does) and one foot in front of the other to get to get healthy. I still have quite a ways to go but I NEED to have hope. Today gave me some more of that.

HOPE.

With the sun (lupus) and the summer (MS) messing with my mind, it is hard to have perspective. Everything acts up in my body and I feel trapped more than during other seasons. I can’t really ever stop being hot. I can’t even really get away from the UV rays (fluorescent lights bother me too) so I’m always just trying to TRUDGE my way through it all and it is HARD.

–By the way, at this point I could point out to the hospital authorities that their Emergency Room sign isn’t that accurate about the actual location and they need to fix it. Do you think they’d want to hear from me about that after all these years? Yeah, I don’t think so either.

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Sicky Icky

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

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

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

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

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

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

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

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

Yet somehow living in the solution helps a lot.

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

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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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