[precaryous]

Not to be a consistent whiner but I'd like to share that since my recent stroke I am terrified of going to sleep.

I hate being afraid ....that I can die at any moment.
But that is what I am feeling.
And no one can do anything about it: fear and powerlessness.

The fear/powerlessness is worse at night.

T generously says I can call her at anytime...even at 2am. I would need to be d**n uncomfortable before I wake her at 2am. Trust that.

My emotions are all over the map since the stroke. Doctors explain my body has gone through a physiological and psychological shock.

I feel pissed, too. I was discharged 3/25/16 and I am still discovering my deficits. I don't know what I need.

Something else weird happened: the day before I was discharged I received an email inviting me to look at my medical information from the hospital online. I was looking for a head ct scan report but found my pathology report from my total thyroidectomy. It said I had cancer. That really sucked that I read about having cancer as I healed from a TIA...and the ENT...or anybody had not TOLD me about the path report...or explained it..or told me about follow up care. I was able to talk to the ENT on the phone the next day. Another irritation: now someone has removed ALL of my medical information from the online portal. Too late! I already read the path report. Now I can't find my echo report or any of the ct scans. There is just some random blood work results. Ack! AND on my "problem" list is the diagnosis of "renal insufficiency." No one has talked to me about that, either.

I have an appointment with my GP tomorrow. Thankfully she is not involved in any of this, so she can be somewhat objective. I don't think my appointment with her tomorrow will be near long enough.

[unaluna]

(((Pre))) thats how i felt after my thing in sept 2012. I was crosseyed and wearing an eye patch for about 6 months. I couldnt drive. It was very scary. You slowly get better. i rsearched my condition on the internet like crazy.

[precaryous]

Sorry you had a medical issue, too! It is scary!

Did you realize right away you were having a serious issue?

I honestly debated two hours before I went to the hospital. My legs weren't working right. I thought with a stroke or TIA only one side was affected. My face wasn't droopy. My knees were swollen but not red or warm to the touch. I wondered if I had sprained my knees badly doing laundry. I didn't know what was going on.

A friend called me at 10:00am and I couldn't speak sensibly on the phone. She said my speech sounded like I was doing major drugs! My voice was dusky and badly slurred. That's when I knew, for sure, that I was having an emergency.
Thank goodness she called me.

They did not restrict my driving...I was waiting for them to...but they did not.

I don't drive a lot. Just to our local store, lab and back..4 min. away. Walmart and Aldi's are a little farther. I think I will use the store's motorized scooter for a while, if I can. I found out I tire easily.

T is thirty minutes away when traffic runs smoothly. I have missed two appointments with her. We talk on the phone, instead. I really miss the safety of her presence. Next appointment is Saturday afternoon. I want to try to go.

Btw, you guys, I apologize if I repeat myself because my memory is a little bit affected, still.

[awkwardlyyours]

Not to alarm you a whole lot more but is there an ombudsperson at the hospital that you could point out these "errors" (that's a gross understatement) to? This sounds like solid negligence on the part of the hospital.

Not sure though if doing that will help either but it may help to get the gears in the system moving?

[precaryous]

Good question! I don't know? I will look into it.

[precaryous]

Thank you for letting me rant.

Another irritation I have probably already mentioned:

I asked the cardiologist about my head ct with contrast. The ICU RN told me it showed one of the arteries in my brain had stenosis. I asked the cardiologist if it is was mildly narrowed or significantly narrowed? What can we do for it...how will I know if it is worse. He said to ask the neurologist. I asked either the neurologist or the Intensivist the same questions (not sure which one now.) He didn't answer my question at all. He said, "Don't worry about it. There is nothing you can do about it."

Just tell me the truth! I don't know about any of you but when I only receive partial information, my mind usually fills that hole with all kinds of possibilities...causing me to worry needlessly some times.

I am grateful I have an established T I trust to help me sort through my chaos.

My mother's TIA was caused by a narrowing of an artery in the brain, and she was also pretty much told there was nothing to be specifically about that artery because of where it is. I know they changed up some meds to hopefully ward off future problems, but I don't know the details.

What did they tell you about the cancer pathology report on your thyroid? I'd personally be more concerned about that at this point. I would want to know if they are certain they got all of it, if I need further treatment to be sure it is all gone, etc.

I would definitely get my GP to investigate the hospital reports and be sure everything is being addressed. That's where a good GP can be your best ally.

[unaluna]

I had woken up around noon, dizzy and crosseyed, i probably had some breakfast(?!), then went back to bed, hoping to sleep off whatever it was and wake up cured. I am heavy into denial! Four hours later im still messed up, so i misdial 911 (if you dial 9111, your cellphone gets stuck). So there i am, half falling off the toilet, trying to take the battery out of my phone to restart it, thinking this is a really stupid way to die! I took some baby aspirin and a couple of nice lady emts showed up with a wheelchair.

I missed my t sessions the first week too but talked to him on the phone. He was great. I just chose not to drive, but i could do most of my travel by city bus. And i already used a walking / hiking stick that ive had for like 40 years now.

My first night home, i was just SO GLAD to be making my old familiar tuna sandwich again! To feel like myself again.

[precaryous]

I made notes from the pathology report (thankfully, since someone deleted it from my hospital information portal.)

It said the nodule was 3.5cm. The tumor size was 0.5cm in greatest dimension.
The cancer is papillary carcinoma: follicular variant.
Pathological staging-
Primary tumor: pT1a Reginal lymph nodes: pNx
There was modular hyperplasia with dystrophic calcification.

My ENT told me when she called that she is calling this "incidental carcinoma."
Many times they follow with radiation therapy but this was so small she doesn't believe any further treatment is necessary.
There was no lymph involvement.
There was no involvement of the circulatory system.

She wants to refer me to another doctor for a second opinion so that we can be sure we are doing everything necessary.

No one has called with that appointment yet. I'm not sure if this secondary opinion doctor is an oncologist..or what. She gave me a name I didn't recognize and I couldn't find him/her online.

I'm going to call her office again asking for this information.

She says basically we got it all but the lymph nodes around my neck are still sore and tender- which was true even before the thyroidectomy.

[precaryous]

Appointment with family doctor today at 4pm. Hopefully, she can give me direction and answers.

Let us know what you find out, precaryous. I know it must be hugely stressful.

[JustShakey]

(((Pre)))
Hang in there girl

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[divine1966]

Let us know how it all goes. Sending you many hugs and prayers

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[precaryous]

Home from family doctor. I don't feel well which, I think, is a side effect of a new cholesterol med I will never take again. She said my blood pressure is too low, for me to monitor my blood pressure, that since I've lost weight the cardiologist might want to reduce the strength of some of my meds. She answered my questions about labile emotions. She was nice about it..nicer than this sounds. She said none of us know each day if we are going to die. She wants me to see the ENT sooner than five weeks. She let me have my head ct scan with contrast that reads in part- "there is a focal severe stenosis of a right M2 segment branch posteriorly within the sylvian fissure..." Well, that's what I thought. She said since I am on Coumadin already, I should be ok as long as my blood is kept thin enough.

She wants me to have physical therapy for my now weakened left leg.

I made notes, so I wouldn't forget everything.

Oh, I've lost 16 pounds since March 19th.

I feel like she is on my side and right there at the helm. For all the gloomy news it was a good visit. My cva could have been much worse.

[unaluna]

Originally Posted by precaryous

...She let me have my head ct scan with contrast that reads in part- "there is a focal severe stenosis of a right M2 segment branch posteriorly within the sylvian fissure..." Well, that's what I thought.

Well, whatever else might be wrong, theres no moss growing on you!

[Rive.]

Goodness, it's disgraceful that they did not speak to you and instead you had to find out this way.

Good news that they got it all + that you had some answers from your family doctor.

Take care precaryous, don't give up..

[Cinnamon_Stick]

I am sorry you have so much medical stuff going on. Its scary. I have had my experience with thyroid removal and they found a spot of thyroid cancer. If you ever want to chat my PM's are open. I think you are strong. Hang in there!

[precaryous]

Going to therapy in an hour or so. First long trip driving myself. First time to see T since it happened. I have missed that awful loveseat and leaning on that stupid stuffed animal. ��
I miss the feeling of T's safety.
I guess I hate to feel so needy and sad.

I hate knowing I'm sick.

T and the family doctor both say we all know we are going to die. I understand. I know it, too. But it's like this understanding is all LIT up and has exclamation points all around it.
!!!!!!

[precaryous]

I asked T if she has ever had a patient refuse to go when their hour was up. She said, no. I joked, ok, I'll be the first.

[unaluna]

I remember being so happy the first time after my stroke that my rent check showed my lovely even handwriting again, instead of the somewhat chicken scratch it had become. That took over a year. I was already driving again probably. The really fine motor skills take a while..