I spent January and February switching my insurance to a New York provider, searching for doctors and asking friends and people I have met along the way for doctors names. Next, I started with calling the hospitals with these doctors, faxing – yes faxing (finding someone with a fax in 2019 is not easy task. I tried but then made PDFs and used an online fax service FYI).

It was a long two months and then everything started to fall into place. Rapidly.

First, I headed to the Westchester location of Memorial Sloan Kettering for labs. The following week I hopped on a train to Grand Central Station and headed out to meet the new endocrinologist. She’s really quite amazing. I’m technically in remission but she actually acknowledged the constant pain I am in and that it’s not uncommon for a late diagnosis patient with acromegaly. Acknowledgment is something that has been missing for so many years in North Carolina except for my neurologist. This is unacceptable.

She sent me for a much-needed spine MRI but, also a thyroid scan because it is proper protocol for acro patients to have a colonoscopy ✔️, heart echo 🚫, thyroid scan 🚫 …Why is this not in the Acro-handbook? Why, 12 years after surgery am I just hearing about the standard pre-surgery tests?

She also referred me to another hospital for endocrine and metabolism. I’ve always said it’s one thing to gain so much weight, lying on the couch, eating bonbons — but I have never done that! This doctor has quite the wait (lol no pun intended). I submitted all the labs and paperwork last night. So hopefully someone will cancel and I can get in before late June!


Keep going… next week I jump back on the train for a scan and an MRI. The ultrasound people are shorthanded — really? …Major NYC hospital doesn’t have a back up person to call in? They offered to jump me ahead of the lineup because I was scheduled for an MRI a quarter-mile away at a different hospital location. It was still after my scheduled time and too late. I wanted that spine MRI!

So she rescheduled me at the local satellite office. They just added it onto my pain management appointment. At least they were helpful.

I headed to my MRI. I hurt. Siri got lost in New York City. She couldn’t get the direction to walk on Lexington Avenue in the right direction – she didn’t noticed her error until I had walked 15+ blocks. That was when I first arrived. So I did a lot of walking and still had a second appointment. My pain was flaring.


They were lovely and efficient. When I was done I texted Paul. He was at, what turned out to be, a lovely lounge in Columbus Circle with clients. One had brought up his wife’s art so Paul shared  mine. This client wanted to meet me.

Did I mention I had already walked way more than I was supposed to, my foot was

IMG_3783
“But you don’t look sick”

blistered, One appointment didn’t happen and I’m exhausted… So you fake it. Hop in a cab and smile.

Next morning the hospital called early. 16 hours after the scan and a surgeon wants to see me on Monday. OK, that was fast… Did they find something? Happy they did?…

Back on the train. New hospital location. I see a Nuro-spine surgeon who, by all accounts is a lovely gentleman. He doesn’t have that awful, stereotypical, surgeon attitude which I have run into many many times. He spent time with me even though it’s not my spine. (UGH) He said it’s systemic not neurological and referred me to rheumatology. He said something very important. Paraphrasing… “We can do better than this for you. Your pain may not be cured but it certainly can be better managed and relief is much needed.”

He said WE CAN DO BETTER.
All doctors should have this thought process — and say it out loud.

Next day they called, said the best rheumatologists are at Hospital for Special Surgery (HSS). They did not have a particular doctor. Anyone would do.

So I called. Someone made a large mistake. So I had a call back the next day. (How much time I’ve spent on the phone and people on the other end keep making mistakes, SIGH, fight through it). It was a Wednesday and they gave me an appointment for Friday! That’s some craziness. But I’m grateful.

But first, on Thursday, I had my new neurologist appointment. So far very happy with her but more to follow. At least she’s it was only 2 miles away!

Friday, in all my exhaustion, I dragged myself to the train. It was too far to walk and a cold and damp day. I asked the police officer at Grand Central Station which side of the street I should stand on to grab a cab. You could end up going around the world just to turn around New York City. He realized the area I was headed was hospital row. With that knowledge he told me to grab a cab right in front of him and he’d have the cabbie make a technically illegal U-turn – so sweet. He stopped traffic, walked around the cab to make sure he could get out and wished me luck. Made my day.

I arrived early – lovely staff – EXCEPT for the office manager. The one who scheduled my appointment. I am not your are average patient and you will not tell me I “misunderstood.” She has no place working in a medical facility — in that role and not know what a PPO is — yes, this doctor is not in network — hence the PPO — I can go anywhere — just different pay scale. She kept saying I misunderstood. I talked to her on Wednesday and called my insurance. I DID NOT MISUNDERSTAND a damn thing. Paying $500 plus, at the time of appointment and see if I get reimbursed – oh, OK I agreed to that. SIGH! Fight for your rights, don’t back down and do your homework! She said in an off putting tone — “FINE – I’ll take your word for it but you’re responsible for the bill if they don’t pay.” Again – she doesn’t deserve that job. I am there because I am sick and I am in pain and I’m looking for answers and under no circumstances can any hospital staff talk to me in that tone. Nor be disrespectful and ignorant. In the last three weeks between doctors, assistance, nurses, receptionists and everybody else I have dealt with over 20 people personally, not to mention the others behind the scenes. One severely, rotten egg. …It did go into my survey, repeatedly, when I received it the next day (get names!!). Because it’s not OK. Too many people don’t speak up. It was Friday. I had seen doctors all week. I was in pain. I was tired and I could’ve just turned around and gone home but that doesn’t do me any good. So I fight on. The receptionist was very nice and knew I was in the right and encouraged me to stay and see the doctor. ..I didn’t plan on leaving. I felt like crying. That woman took my last bit of energy.

The nurse was lovely and I vented to her. She was kind.

The rheumatologist was extremely thorough and understanding… But as I feared nothing conclusive. Lots of labs and hand x-rays. Not one ping. Not one direction to look in. Yesterday she dismissed me. She recommends exercise (but I can’t move) and sleep hygiene, as in, take some of this melatonin that is long acting and a sleep specialist just taught us about. WHAT!!! …and pain management.

Acromegaly causes and arthritis most like I osteoarthritis but it is not. They need more research but this has some useful info.

The weekend was a sofa-city weekend. I could not move with pain and exhaustion. Monday was more of the same. Tuesday rolled around and I was able to stay local at the MSK satellite office. Labs, thyroid scan and pain management doctor. She doesn’t know what to do with me. I am out of her scope. MSK is the leading cancer hospital so she mostly sees cancer patients. I appreciate her honesty and her suggestions and her offer to do what she can if I can’t find better help. …as of this morning she is the one I will call.

It has been a busy exhausting month.

I will not give up.
I have no significant answers.
I will fight on.

As the month has gone on, my body aches it’s hard to be creative when your hands hurt and swell. This brings me down. Tears come very easily right now. I go into each appointment with hope. It’s beyond exhausting. So I cry and move on to what’s next. I’m surely not going to live like this…

I will fight on. And here in New York, I’ve already had each doctor tell me if they can’t help they will find someone who can. That’s a blessing. It’s not something I’ve heard very often. Just wish didn’t take so long.

Don’t give up on yourself.
Don’t allow disrespectful, rude, ignorant staff to rule over you. This includes doctors (not that I have encountered any here in New York). But you deserve better. Always. They are also working for you and if that needs to be noted, reported, expressed… do it! I will keep the journey going. It’s been an incredibly fast month. A whirlwind of appointments with fast answers but no results.

I need a reprieve from the pain so I can concentrate on art. It uplifting and it’s within me.  I was selected to be in a juried art show in Connecticut and need to deliver my paintings tomorrow. I am praying for some pain relief and a pleasant, one hour drive. Not looking forward to discomfort but I do miss driving myself anywhere I need to go. ..Freeing

Keep track of your doctors, your labs, your moods, your concerns… Speak up. If you can’t speak up, ask someone to help you. Keep yourself organized with HealthStorylines App. Use my link to download the app today!

April is around the corner. With spring trying to take hold, I am praying that a good medical directions takes hold too.

#acromegalyawareness
#HealthStorylines #acromegalyalum #acromegalyacademy
#acromegalywarrior #keepgoing #vivelafranceny #wegohealth #patientworthy

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