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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And Now I Shake

ECG complex.

ECG complex. (Photo credit: Wikipedia)

For the last six weeks I’ve felt light-headed; I’ve often brought this up to my internist and she has always said that it’s my low blood pressure ( 80/60.) “Salt your food” she murmurs, “stand up slowly from a seated position.” Then she adds: “That happens to me too!!” (Now I’m SURE we can be best friends because we have so much in common.) My husband insists that it has been happening more often and he has nagged me to see my doctor for a few weeks now, I’ve refused.

Yesterday I had an annual physical with my gynecologist who I like but totally FORGOT that she’s a worry wart like I used to be. Notice the PAST tense. I casually asked her if she thought I needed to see my internist about this small issue. She said “yes” and “that it might be a problem with my heart “valve.” The only “v” word I expected to hear from her was “vagina”( if there are any guys reading now is your opportunity to run) valve did not make me happy. I finally confessed to my husband, tried not to look at his smug face and called to set up an appointment.

I described feeling light-headed, having to bend my head down to prevent fainting, feeling very warm, getting a massive headache but never passing out. I could reach a chair or a bed and sit down and I’d be fine in a few minutes. It never happened when driving and obviously if I felt weak, I wouldn’t go out. It did happen going up or down stairs but I always held on to the banister. It was NOT, in my estimation, dangerous.

Now that I had conceded, a nurse gave me an EKG which was perfect with the oddest exception. My whole body started shaking. Once or twice lately I have noticed that my body starts shaking uncontrollably and I can’t stop it. I have asked my husband if he could see it and he has always said “no.” I think it’s one of those “guy” things. The nurse noticed it right away, I’m sure a best friend could as well.

So now, I could add “shaking” to my long list of maladies. Along with Fibromyalgia, almost passing out, Thyroid disease, Auto-Immune disease of the thyroid,  impaired hearing, I shook. I felt like one of those bobble heads except it wasn’t just my head that bobbled, it was my body wobbling. A nurse took five or six vials of blood and then the doctor told me (wait for it…) I had to go to the cardiologist for an echocardiogram and even worse, a stress test. No, No, No! Ugh, this is sweat and embarrassment  in front of others and I hate that kind of stuff. I gave my husband the evil eye, actually two evil eyes. They scheduled me in six weeks, obviously not a crisis situation to them (Thanks, honey!)

My doctor used this new phrase at least five times during my seven minute visit: “due diligence. In my language that means ” I’m running these tests to cover my ass.” For someone who used to get anxious for days, even weeks, I only got anxious for about five minutes which for me is zen-like (and that’s when they  told me I had to see the darn cardiologist.)

As soon as we got home,  I made myself my old standard comfort food, an American cheese sandwich on soft bread with butter, some salt-ridden baked sour cream and onion Lays potato chips( for medicinal reasons only) and a cold Yoo-Hoo to drink. For dessert, nothing speaks comfort more than a dish of really rich vanilla ice cream, softly melting in a red ceramic dish. No drugs of any kind were necessary. No jelly on pizza, I required nothing else. Damn, I was proud. But, I still have to do those stupid tests unless, as my sister suggested, I cancel?! What do YOU think?

Woman in Café with Yoo-Hoo and Cigarette, afte...

Woman in Café with Yoo-Hoo and Cigarette, after William Glackens (Photo credit: Mike Licht, NotionsCapital.com)

Feel Good, Eat Cake

I just read a friend’s blog and while I have never met her in person, I worry about her. There is a definite bond for those of us who have some kind of chronic disease or illness. We feel for each other, and we really do care. I see myself sometimes in her writing,  stressed out, anxious and at times depressed. I have been there, done that.

Luckily now (even though I still have the same illnesses) I have taken the time to listen to my inner self (when it works). Sometimes it’s better than listening to many other people. Who knows you better than you? Also, apparently the medical world is trying (and succeeding) in making women go crazy. Let’s blame them. In light of this, take the newest controversy which has been a staple in womens lives for years: (and encouraged by all doctors)  calcium supplements.” You MUST take them”, my gynecologist says. “Definitely says my internist,” you HAVE to, it’s for good bone strength and preventing osteoporosis.” Oh, okay, absolutely. Now, just recently “we did a little research and the calcium supplements are now related to an increase in heart disease for women.” Huh?  I don’t understand how on earth we are supposed to know what to do, what to take. No one is making it easy for us, especially doctors. Ask a number of doctors one question, take your pick of the answers they give you. Why does this always seem to happen to women and not men? How come they don’t get conflicting and controversial views half as much as we do?

It’s all personal choice. Remember the saying “everything in moderation?” (if not, my dad used to say it all the time). I think that’s mostly true. Denying yourself certain things, certain foods will make you (okay, definitely me) crave them more. So, if you want dessert, order dessert. You don’t have to eat the whole thing. Ask the waiter or waitress to give you half and put the rest in a container to take it home if you want. As my friend Bruce always said “no ask, no get.” It’s really as simple as that and a motto I live by. (Thanks, Brucie)

We all have our individual preferences and rituals. For example: I make a mean banana bread (if I do so say so myself). I know that if I add raisins to the banana bread I could probably, with enough time, eat the whole thing. However, if I put raisins and chocolate chips in (the family favorite) I don’t eat much at all. Why? I don’t really like the addition of chocolate when I love anything raisin-like. It’s all a matter of trying to think things through first and that, I admit, is harder than it sounds and it  is an ongoing problem.

Let’s all try to worry less, walk a little more, take in a few minutes of sunshine and try to live life day by day. Not only “one step at a time” but one crawling, aching, stiff joints and baby step at a time. We’re all in this together.