Looking For Dr. Lisa Sanders, Dr. House, The Mayo Clinic?

Dear Dr. Lisa Sanders, Dr. House, New York Times, The Mayo Clinic or any doctor, active or retired that wants to save a life and help a really nice, frustrated, sick woman.  If you are looking for just the money, trust me, you are not the doctor, if you are looking to make someone who is desperate, happier, even if there is no answer, you’re my person. My medical person.  (if you watch Gray’s Anatomy you would understand this, if not ask someone who does.)

I am desperately seeking a miracle, yes, a doctor or a team of doctors who will put all my different symptoms together (for the last eight years) and try, just try, to figure out the root cause. Believe, I have an idea but not the credentials. I don’t have the knowledge or the education, just an inner voice. That leaves me with nothing. If there is nothing that comes out of it, I UNDERSTAND but I will know, someone really tried.

I have an internist who gives me 7-8 minutes and two specialists who are absolutely amazing but they send me to different specialists and it is too much for me to handle and take in. You understand, right?

The Mayo Clinic in Rochester.

The Mayo Clinic in Rochester. (Photo credit: Wikipedia)

 

 

 

 

 

 

I know the Mayo Clinic would take me! I have about six doctors who would gratefully write a letter to get me inside the Mayo Clinic and off their backs. Do they have the equivalent of financial aid?  I probably would be the most interesting and mystifying patient they have seen in a long time. Trust me, I’m not bragging. Living in my body and brain is pure hell.

 

I asked, okay, begged, two of my nicest specialists today, my cardiologist and my nephrologist if they could assign me to a medical student to take on my case, you know the way they charmingly do in Gray’s Anatomy. They both shook their head within a second and laughed. Sure, they would like to help but they can’t. Of course if I had A LOT of money (which I don’t at all) I could hire a private concierge doctor and maybe that would help me, yet break us financially and there’s no guarantee. Honestly, I never heard the word “concierge doctor” in my life. As for random medical students to assign them to my case alone, they laughed out loud. Gray’s Anatomy is truly a fictional fantasy. I want to be someone’s person. (Ask a friend.)

 

I’ve thought of the Mayo Clinic, Johns Hopkins and I need to do more research on that this week. At today’s nephrologist’s appointment he literally ( a 58-year-old) referred me to a pediatrician. Yes, it is not a typo. Supposedly, there a doctor who specializes in low blood pressure and syncope who sees children and on occasion, if begged, a woman of thirty, helps. My doctor is going to talk to him and plead with him to see me. P.S. he said no  but referred me to a pediatric neurologist,  (what?)

DO YOU SEE WHY I NEED HELP?

He also suggested a fat biopsy. A FAT BIOPSY? What on earth is that? I googled it and it really made no sense to me plus it’s always a bad idea when I research something, a very bad idea. He also recommended Hormone Replacement Therapy. My jaw dropped. He said what?

Yep, the dreaded  (my own personal view) of adding more medicine to my body?

I also have Eppiglottitis, and have had this three times already. Figure that one out. I have posted many articles about it, it’s deathly pain, its sword-like plunge  beneath your throat. Many readers have read this article and many ask me questions. I know there is a vaccine to prevent this for infants, I’ve asked several doctors about giving it to me. There answer is a confused look on their faces and they say “we can’t.” Why, I pursue, “because it’s for children.” Take a chance, do some research, you can’t even try?? Have you ever had that horrific pain? I also fall down from low blood pressure (we think) and randomly shake.

I have more symptoms but I don’t want to scare you away!

Does anyone have any connections? I’m realistic, not stupid. Please forward to anyone you may know at The New York Times or Dr. Lisa Sanders or The Mayo Clinic.

Please.

Thank you in advance.

 

 

 

 

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Who Am I?

Who am I?

Image by stevec77 via Flickr

Am I more than the sum of my symptoms or less?  It started with menopause, the entire disintegration of my body. All of a sudden my thyroid became underactive and I thought I had achieved a state of false bliss. Just add Synthroid and  I will be able to eat AND lose weight at the same time” Well, as it turned out, not exactly. The image of every foodie fat girl eating AND shedding pounds like my hairy mutt sheds her fur was not accurate, I was disappointed. I was  in pain all the time, my favorite phrase: “I feel like I have the flu but without the fever.”  I ended up not just having an underactive thyroid but I had Hashimoto’s Thyroiditis, an auto immune disease of the thyroid, basically my own cells were attacking me. My internist nodded her head and said “there’s really nothing more I can do” and as I lay there sobbing, undressed in the exam room, she clicked on her brown high-heeled shoes turned swiftly and marched out of the room.

One doctor led to another and another all with differing points of view. The second Rheumatologist  diagnosed me with Fibromyalgia but still, my aches and pains continued.

The third hot-shot doctor specialized in RA and Auto-Immune Diseases. “Fibromyalgia” he said, “that’s nothing but a lazy diagnosis.” We treat the auto-immune disease, straight and simple. Of course, not that simple. He started me on Methotrexate which helped but landed me in the hospital for my second bout of Eppiglottitis and possible lung damage. I develped a 24/7 cough, asthma and breathing difficulties, the pain from the Epiglottitis was excruciating. Several prescriptions and an inhaler later I came home.

They stopped the Methotrexate and he put me on Cellcept which worked well, with the exception of intense intestinal distress that forced me to stay in the house (and close to the bathroom for 8 entire weeks). I complained after four weeks and hot-shot ignored me and said “stay on it another four weeks” and like a fool I listened.

If I was rich I would go to the Mayo Clinic but having had no income in a year, that rules that out. One day at a time? How about one moment at a time? Today I stayed in bed, napping and trying to calm my internal self. Part of me wants to kick and scream and fight, the other part is too tired and weak to even imagine it. Along with the aforementioned symptoms I also have narrow-angled glaucoma which is very serious, interstitial cystitis, TMJ and a connective tissue disorder as well as a balance issue. Who have I become? When did all all these symptoms become me?

My latest blood tests come back next week and with it, I hope, will be some helpful information. I am tired of being tired, sick of being sick. I feel horrible when I fall and my two sweet children and darling husband come racing up the stairs to see what happened….again.

Help me, fix me, try me, define me.