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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Inject Yourself !!!

It’s  been a very long time since I started my journey into medical madness. First stop: Menopause. Second stop: an underactive thyroid. Third stop: Hashimoto’s Thyroiditis (an auto immune disease) Fourth stop: Fibromyalgia. I was being treated for my underactive thyroid with  Synthroid and more synthroid. Cymbalta was added on top of Prozac, intertwined with various other drugs for various other ailments. Then, a very long period of feeling like I had the flu without a temperature, no energy, no strength, every body part and his brother ached, all I wanted to do or was able to do, was pretty much, sleep. I felt and looked like hell.

That was about a year and a half ago until I was forced to see a specialist in NYC that dealt with joint diseases and auto-immune diseases only. That became the start of more medicine, but more hope.  I had to keep a journal of how achy I was (yes) and how tired I was (still yes.)  Then came Plaquannel, high doses of Vitamin D and after that, folic acid. After a few more months he added methotrexate and to contradict some of the really bad side effects of methotrexate he added Levocoir or something that sounds like that.  That worked and it didn’t work, sometimes it worked and sometimes it didn’t. There was no rhyme or reason as to when it would work and when it would not. In addition, he had me see his colleague ( girlfriend) an OB-GYN, and start me on bio-identical hormones.  I always swore, absolutely, positively swore I would NEVER , ever take HRT (Hormone Replacement Therapy.  Again, I started rubbing the Estrogel in my arms every day. When does it stop? When do I stop?

Since I have not reacted most positively to all the drugs listed above, my guru Dr. wants to go to even stronger meds, including injectible ones. That’s right, injectable drugs, in my thigh, given by me, every day. From the diary he asks me to keep from one to ten, one being a mess and ten being (in my words)euphoric or on top of the world, I am at best a five. He is not happy with that number, he wants it to increase to an eight. I will never be a ten, with my auto-immune disease, but I should be higher than a five or sometimes a two. At least that’s what he says, my Guru Dr.  Me? I’m not so sure.

How much though, is too much?  How much more medicine to I want to take in my already overly medicated body. Why isn’t a five acceptable? Are these his standards, or mine? I am weary of taking stronger drugs and injecting them daily. For what? A higher quality of life? I have an acceptable quality of life and I am beginning to think that that’s enough for me. The name of the drug he wants to introduce by injection is Enbrel. Since I become hysterical at looking drugs up on Web MD, my husband always reads it first. For him to shake his head and say, “I’m not so sure about this one…..” is tantamount to me shrieking, feeling sick and fainting all at once. My husband is a calm man, I am not considered to be calm when it comes to medicine, illness or personal safety. I admit it. I worry.

Yes, I would like to feel better than I do but at what cost? Doctors often breezily refer to drugs with well known risks as if they were telling you to take a multi-vitamin.  I am going to have to seriously think about the next step, although I’m pretty sure I know what I am going or NOT going to do. I don’t want more drugs in an already inundated body. I don’t want to inject a drug that has more negative side effects than it does worth. I’m sick of all of it, sick of feeling poorly, sick of taking drugs and sick of Dr.s and yes, sick of myself.

I can’t tell you what I am DEFINITELY going to do, I need much more information. Why is a five in a range from one to ten such a bad thing? What about the hidden side effects of all these different medicines? And, what about quality of life? Maybe being a ten is not for everyone, or a nine, even an eight. Now I am going to weigh all the risks and get more facts,  but, for the meantime I will stay at five; and just be very grateful for that.