I just bought a cane. A dull pink one straight from the pharmacy. If it really helps my balance issue I will special order a cane that will have turquoise and a tiny bit of shiny silver and beautifully polished … Continue reading
I never stopped being a patient, not since my thyroid went out of wack 3 years ago, not since I was told I had Fibromyalgia (and then told it was a “lazy diagnosis”) Not since the prednisone, the hospitalization for eppiglottitis the 24/7 cough that would not go away, not since I was sent to the Pulmonologist, the ENT the addition of 5-7 different medications. Not since my stint in the packed emergency room with an overnight stay in the hospital with the worst pain I have ever had in my life.
Here I am again, world! Stuck and pissed off with yet another chapter to my ever-so-boring and relentless saga of pain, chronic pain, auto-immune diseases, Hashimoto’s Thyroiditis, lack of energy and tonight, a really bad, horrible, disgusted and angry, almost-in-tears mood.
The latest is that my Synthroid level ( TSH) is very, very low, too low said the doctors. To those in the Club of Thyroid Disorders out there, (COTD- I made it up but it works) I know you will understand. The T4 is perfect. One doctor, the evil endocrinologist (lower case on purpose) sent a prescription (albeit the wrong prescription) in the mail telling me (no, writing me) he was surprised with my numbers but I should reduce the Synthroid medication (buzz word) to 50 mcg. First I was at 88, then 75, now 50??? That’s like telling someone who has the flu, to get up out of bed and do somersaults while standing on their heads, backwards. I’m down enough people, now this? It makes no sense.
I wrote to my Guru Dr. in the City who handles the type of Autoimmune Disease (Hashimoto’s Thyroiditis) as in***THYROID DISEASE to tell him. He suggested that my” Endocrinologist” do a simple TRF blood test and he guessed I might have something called Secondary Hypothyroidism ( I know, I could so be on Gray’s Anatomy with the amount I’ve had to learn and remember.)
Here’s the problem. The nasty, dull, mean-spirited endocrinologist (lower case on purpose again) who I am going to DUMP as soon as I find a new one, refuses to talk to me on the phone. Just for a couple of questions. “No, come in”, he said. “I just want to ask him a question” I pleaded to his nurses “No, come in.” I’m seething. First of all I have never heard of a doctor that won’t take a phone call for a question (I wasn’t demanding to speak to him at that moment) and that absolutely refuses to return a phone call from a patient. Second, he knows about my Guru Doctor in the city since I have copied him on everything. (Do you think this could be a terrritorial thing?) Third, he did not believe that I had, indeed, a note from my Guru Dr. to suggesting he test me for TRF (whatever it is). No. What? You heard me. No. No phone call, no question, no way, no how. “It is too difficult to explain on the phone” the nurse parroted. Are you kidding me? I had one question about the blood (yes, in the lab in the office) test and a simple thought: wouldn’t it make sense to test the TRF level FIRST (as my Guru Doctor said) then to start on a regimen of a new medicine that could take 4-6 weeks to kick in? Isn’t that throwing the donkey in front of the carrots? (or whatever that stupid expression is.) Not to mention, I do not want to go back to a doctor that treats me with such disrespect (and he always has). I know he doesn’t know that the fifty dollar co-payment would be hard for our unemployed selves. I understand that, but, a 30 second phone call?
Well, you know what the answer is I’m sure. “No”. So here I am, calling new Endocrinologists (one is on vacation until the 20th, the other does not return phone calls) waiting to make an appointment. Oh dear Lordy, Lordy, it’s July and the doctors (at least the ones I’m trying to reach) are on vacation, and of course you cannot leave a message.
I have that creepy, queasy, angst-ridden feeling in my stomach. What now, I ask? I can’t reach any doctor AND short of sending an “I BEG of you” message to my Guru Doctor (which I will do anyway in the early a.m.) I will be sitting home in a flurry of frustration and anxiety. I will be sitting on my bed, fed up, confused and furious and yes, a little scared too. A little courtesy, perhaps DOCTORS?? Yeah, right.
I feel totally helpless and demeaned. I feel anxious and confused and ignored. Does anyone understand this? Is this the time for an out and out binge on sugar- laden treats? Can I run and hide from my anxiety for a few minutes with cookies and chocolate, and that sweet powerful surge in energy? This doctor says Yes. Absolutely. Starting Now.
The almost 16-year-old young lady lies beside me as we watch her favorite show, Glee. I watch that with her to bond, to share something with her, to enjoy something together. I try to make a casual reference to a theme in the show that I feel is important and she totally shuts me off. “I don’t want to hear about it” she says harshly, hand raised in the “stop” position. Sometimes I don’t know who she is or how she works. Granted, she is the opposite of me in terms of personality, she is more like my husband. She keeps things deep inside her where I wear my heart on a sleeve. If there is something upsetting me it shows on my face, 5 miles away but she wouldn’t notice that or can’t pick up the social cues. I don’t know if it’s her style or her personality or just how her brain works. My son, on the other hand, just has to look at me from afar and ask “what’s wrong?” But he and I are much more similar in nature so that really is no surprise. We have the ability to think the same thing at the same second, to understand each other with a simple glance, to read each others mind. I love and like my children equally, believe me, but some things are easier when you can identify more with a person’s style.
I find my daughter to be embarrassed by me, by the way I say” Hi “to her friends,( I know, better to stay silent and move away) to the way I dress, eat, and even dance alone in my room. I feel I can do nothing right with her most of the times, (and I am sure, she feels the exact same thing about me) with the exception of driving her to the mall when she wants to go, or paying for a short skirt or a bikini. Then, she is all smiles, warmth, happiness with free-flowing, easy gratitude. It’s when I say “no” that brings out the tone of voice I find less than respectful and the teenage girl “attitude.” Mothers, I’m sure you know what I mean: tone, eye roll, silence, shoulder shrug, etc.
I feel like I’m being used; I know I am being used. I know it’s supposed to be natural for mothers and daughters to have these ongoing battles but how long are they going to last? I want my daughter back, please return her to me, I promise to be patient. I’ve had differences with my own mother from time to time but they were emotional in nature and usually when I felt hurt. With my daughter, she acts like a part of the family, but sometimes in it for herself. She will smile sweetly and talk softly when she wants me to take her to the nail salon or to buy her a frozen vanilla latte from Starbucks. But, when the “boys” were out-of-town and I offered to take her out to eat at her favorite restaurant, it was a distinct “No Thanks!” because she would be embarrassed to be seen with me on a Friday night, alone. Sigh, there is a part of me that totally understands this, I probably went through similar things myself, maybe I hid it more. But, as a parent, it still stings, no doubt about it.
Maybe it’s the entitlement issue, the me, me, me, all me generation as my husband and I call it. We don’t differ our parental styles to our son and our daughter but their attitudes are totally different. I DO NOT favor one child over another but yes, I do understand my son better than my daughter. She will not let me in, I try not to take it personally, but it’s hard to do. My daughter, at this age, basically lets her best friends in, they are her life and it’s perfectly age appropriate; family is just making cheese sauce for her pasta or driving her to the mall so she can be with her aforementioned best friends.
I feel hurt and angry and very, very tired. If only once in a while I would get a genuine sign of affection or gratitude or heaven please help me, both, it would make me feel happy, no ecstatic. My goal is this: tomorrow I will go to the library and get the book I reserved aptly called ” Get Out of My Life but first can you drive me and Cheryl to the mall?” Maybe I will get some answers, at the very least, I think I will be getting support and explanations. That alone, is a very good, first, small step.