Hi. I took several hours off of work again today, as I am feeling quite debilitated. Headache, jaw- so much pain, ear pain, Brain fog…I am finding it more and more difficult to function and taking a day or 2 each week off of work will likely not end well. In my feeling of desperation, I contacted Dr. Costantino’s office in New York. Very shortly after, I received a call from his MA. She spent 30 minutes on the phone with me. It seems like a great practice. I am tentatively scheduled for a June 8th telehealth visit with the doctor, pending they receive my imaging and records. I emailed all records that I have. I requested my recent CT from Health Images in Colorado be sent, however it will take 3 weeks to get it via Snail Mail. They did send me a link with all images on a portal. I tried to upload them to the site where several members have shared their scans (@KoolDude and @GCD) but am unsuccessful so far. I have the ability to export the images, but not sure how to save them, etc. I could definitely use some help. That being said, I am hopeful that either Dr. Hepworth will be able to get me scheduled sometime in the near future, or that Dr. Costantino will be able to help me soon.
@EaglesWin First, I hope you find help soon regarding your health. I am wondering how you want me to help. What site are you referring to? If you mean this site (https://www.dicomlibrary.com/), it has quick video on it that shows how to share your images but first you need to downloaded them to your PC from the portal they gave you then you need to upload it to that site. Here is the youtube video on how to do that (DICOM Library by Softneta: upload, anonymize, view, share and download anonymized DICOM files online - YouTube). You need a faster upload speed though. Not sure how else I can help here.
So sorry that you’re feeling rougher, I hope that you can get the scans etc to Dr Constantino in time…
Thank you, @KoolDude. That is the site I was referring to. I’m working on it.
Thank you, @Jules.
I am so sorry that you are feeling awful. I empathize. While I’m still in nearly the same part of my journey that you are (diagnosed, imaging, waiting to consult with surgeon and set a surgery date), I can say that I am here to offer support, to commiserate or to simply listen if you need to vent. The best part about finding this forum is that we aren’t in this alone - at all, or at any point. Keep us updated! Please also remember that while this is easier said than it is put into practice, you have to prioritize your health and wellbeing over your job. I am told that constantly and always answer, “I know that I’m more important than my job, but my job is the only reason I can afford to live, pay bills and get treatment. Without it I’d have no money and more importantly, no health insurance.” If you are in the US that likely applies to you too - so we have to walk a very fine line between prioritizing our health and keeping our jobs so we CAN take care of our health. It’s unfair and it’s not easy. Again, you aren’t alone. Have you considered asking for medical accommodations or requesting a medical leave of absence? I obviously don’t know what you do or what your specific situation is - but I’ve had accommodations for a while due to another condition I live with and I am already discussing a medical leave with HR because of my ES diagnosis and upcoming surgery (even though I do not even have a tentative date, yet). Perhaps that’s an option? If you take official medical leave, your job is safe and you do not have to stress about all of the sick time.
Thank you for this reply @slekeille!
It truly helps to feel understood. I’m so sorry for you and for all of those trying to function with our symptoms. I know you are right about my health being the priority.
I finally spoke to my boss Friday regarding my frequent time off. She asked me to look into intermittent FMLA. It’s a relief to know something exists that can possibly provide temporary accommodations until I get the surgery.
I contacted ARNP at Dr. Hepworth to request support in filling out the documentation. She said they don’t do that and I’ll have to go through my PCP. My PCP informed me that he doesn’t understand ES. When things like this occur, I find myself feeling alone/helpless again.
I feel confident in Dr. Hepworth’s expertise and his promise to be a partner in my journey. He is absolutely my first choice. His knowledge and experience with vES is so important to my situation. I feel terrible that the office is struggling with staffing and the excellent providers are being stretched so thin. Just not sure where to go from here.
So, I’m trying to regroup and figure out next steps.
Hey! I just wanted to say that it’s standard practice for PCPs to fill out medical documentation for work. That said, I would tell your PCP that they do not need to fully understand ES in order to fill out the paperwork, because in these scenarios the PCP usually asks the patient what they should put down, anyway. Tell your PCP what your symptoms are that make you unable to work intermittently, ask them to write specific things in specific text fields and so on. They should agree to this if they are a good PCP. If they aren’t, I suggest finding a new one - seriously. My PCP did my accommodations paperwork and will do my medical leave paperwork - and he writes what I ask him to. I hope you figure this out! You aren’t alone, again.
I hope that FMLA claim works out for you & that you can use @slekeille 's advice to get the forms filled in by your PCP