Last year I did a series of interviews and other presentations about the challenges a lesbian can face in trying to obtain competent care from healthcare workers. Including some of the whoppers some idiot doctors have confronted me with such as, yes, I’m sure I’m not pregnant. An argument I had with an idiot Middle Eastern doctor in the ER who insisted I could be pregnant and not know it. Uh no! While my partner and the gay x-ray tech howled with laughter.
This is a real problem because a lot of drugs have off label uses. Birth control can be used to control fibroids as well as curtail unwanted pregnancies.
I run into this constantly. My work sends out a health tip brochure every few months based on your prescriptions. I take a drug at low does that used to be prescribed for depression at much higher doses. I take it for closed brain trauma and migraine prevention. I keep getting hints on controlling my depression because I take this drug. I talked to my pharmicist about it and she said it isn’t prescribed for depression any more. It’s mostly for CBI and for nerve pain now but it is still reported as a depression drug.
It also gets reported to the MIB. In case you didn’t know there is a bureau similar to a credit bureau that tracks your prescriptions not by your diagnosis but by what you are assumed to be taking it for. Any employer or insurance provider has access to this MIB, medical information bureau and it is off wrong because of off label drug use and you can be refused insurance or a job because of a disease you may not have and you will never know it.
So some pharmacist deciding not to provide care can and is way off base by assuming you have a certain disease.
I have now had a colonoscopy, an endoscopy, an ultrasound, a celiac test, and as of this morning another blood test and I have the implements for an Arts and Crafts project the next time my colon kicks into action. That should be fun, NOT! They gave me a huge paper bag filled with implements and tubes to fill up. Yeah, that’s a subtle thing to carry across the work floor to the head. That’s worse than trying to hide two extra strength Kotex.
This time we are testing for several kinds of parasites. Where I would have picked up one I have no idea. Every place I’ve been including camp was filled with other people including small children. No one else is sick that I know of and the doctor agreed the chances of a little kid picking up something if it was there are better than even mine.
He also wants me to do a milk challenge but I pointed out this is off one week and on one week and if it’s milk I’d have it all the time since I swill milk with almost every meal if I’m not drinking tea. He did confirm something I’ve always wondered about, people of Scandanavian and Northern European gene pools are rarely really lactose intolerant. Everyone can be if they go off dairy for 6 months but a constant milk drinker no, doesn’t really happen. There is a reason Scandanavia, Minnesota and Wisconsin are covered in cows. http://en.wikipedia.org/wiki/Lactase_persistence, “Roman authors recorded that the people of northern Europe, particularly Britain and Germany, drank unprocessed milk. This corresponds very closely with modern European distributions of lactose intolerance, where the people of Britain, Germany, and Scandinavia have a high tolerance, and those of southern Europe, especially Italy, have a lower tolerance.”
So Saturday morning I have to drink three glasses of milk, shucky darn. It’s either that or stop dairy entirely and see if it stops. Not doing that, I’d have nothing to eat. We did find out that I have yet another food allergy, I found out I was allergic to soy during the first part of this odyssey so maybe there is another hiding somewhere but I have no clue what it would be.
If I don’t have parasites then the next fun test is an MRI of my small intestine. He did tell me if it’s my small intestine then it will be very difficult to diagnose.
My doctor is one of the best in the area and is a professor at a very respected medical school and one of their hospitals. He knows what he is doing but this is getting really annoying. He told me yesterday that he always trusted what I said because I’m a “straight shooter” and don’t mince words.
This is driving me crackers.
I remember the woman at the North Hollywood library pointing to her daughter who was sitting near me and telling my mom her daughter had the mumps. I remember having the mumps and thinking it was the worst sore throat I’d ever had. I remember my dad calling me chipmunk for days. I remember living on big stick popsicles because it was the only thing that soothed my throat and lying on a hot water bottle to sooth my ears.
I remember the pain of the doctor taking off the bandages on my eyes after my eye surgery when he shown a bright light in my eyes to see if they would react. I remember seven years of seeing nothing out of my left eye and having limited sight in my right. I remember my first word according to my parents was “LIGHT” because light is important to a kid with limited sight. I remember my mom telling me I had had a twin. I remember mom telling me I couldn’t see because someone had given her the measles when she was pregnant with me. I remember getting my first pair of glasses when I was two and a half and my mom told me later I shouted, “I can See!” but I really couldn’t I could just see better than I had. I remember the kids who called me 4 eyes in school and the one who shoved me down and broke my glasses because I was the only one in the entire school in 1959 who had glasses in first grade.
I remember going to school with deaf kids whose moms taped the hearing aid batteries to the top of their heads. I remember Steve and his Braille type writer and guiding him around Grad Night at Disneyland with my friends because no one else would help him. I remember kids with CP and the ones who couldn’t walk at all, all of them because their mom’s like mine,had had German Measles.
I remember my mom’s friend Mrs. H who gave rides in her chariot (wheelchair) to all the kids to make sure no one was scared of people in wheelchairs or who couldn’t walk. I remember riding in her lap and her telling me about having polio. I remember getting the first polio vaccine in a sugar cube after standing in a long line at school with my class mates and having to get another one a year later because it didn’t work.
I remember having the chicken pox and thinking I wanted to scratch my skin off my body and my mom telling me if I scratched I’d have a scar so I picked a spot on the back of my knee to scratch because I HAD to scratch something or I would go insane and the scar on my left arm where I scratched without thinking. I remember baths in huge tubs of oatmeal because the doctor said it would help and it did, for about an hour. I remember the blisters and wondering where the next one would appear. I remember two weeks later my little brother getting the chicken pox so bad on his eyes they had to bandage them. I was 6, he was 4..
I remember him getting the measles and being so sick but he never got the mumps but I would get the measles 12 years later my Senior year in high school and giving it to my class mates. I remember the school nurse not letting me go home even though I had a high fever because my mom was at work. I remember walking home carrying my guitar in the pouring rain and thinking how good it felt. I remember the next morning when all hell broke loose. I remember fainting at the top of the stairs after telling my parents I didn’t feel well and I was thirsty. When I fainted I missed the wrought iron at the top of the stairs by less than an inch and my sister told me I looked like the Statue of Liberty because I went down holding a cup of water high in the air and going straight back. My last thought was “Don’t spill the water.” Dad said I was dead weight and impossible to move until he got my brother and I only weighed about a hundred pounds. I remember all the red spots. I remember the nurse being furious at me for exposing the school and her face when I told her it was her fault when she was the one who hadn’t let me go home. I was off school for two and a half weeks.
I remember it was the first day of the Sapporo Olympics and my mom gave play by play yelling up the stairs of the Opening Ceremonies because I had to sit in the dark and wasn’t allowed to read or watch tv because it would damage my eyes.
I remember getting the Hong Kong flu in high school after the rest of the family had gotten it and stayed home together and had what I thought was fun and I was home alone and miserable in 1968. I always get the flu vaccine.
I remember my dad telling me about losing his mom after his little brother was born in the Spanish Flu epidemic in 1919.
I remember the doctor trying about once a year to give me the smallpox vaccine and it never would take but they kept trying for years. I’d get the scratching on the skin and nothing and mom telling the doctor that my not reacting scared her. So I have no small pox scar that was such a badge of courage that every kid had one on their arm.
I remember when the only vaccines were DPT and mom and dad telling me how horrible Whooping Cough was.
I remember pain and sickness and trips to the doctor and I know that now that is totally unnecessary and that today’s parents never had to have any of that and they don’t remember how scary it was for us and for our parents when we caught diseases that there was no vaccine or cure for except time and hope.
Today was sooo much fun. I spent the morning at Huntington Hospital’s Imaging dept getting an Ultrasound of my whole abdominal region and then a mammogram that was long overdue. I decided to take the train just in case they decided to keep me because if I got admitted then the parking would be outrageous.
So I got up at o dark hundred to take the Orange line to the Redline subway to Union Station and then to the above ground train, the Gold Line. I love the Gold Line it’s the prettiest of our trains and goes through Chinatown and then up through Highland Park to Pasadena. It’s being extended but it isn’t open yet.
Anyway it’s a fun way to travel the distance and way better than fighting the freeway at that time in the morning. The Ultrasound was interesting because I could see the tech’s face and I got the feeling she wasn’t liking what she was seeing but they aren’t allowed to tell you anything. Somehow the process of lying flat made my back go into spasm and that made for more fun. Then I had to truck on down to the Breast facility for tits in a wringer although it wasn’t as traumatic as the last time. The machine didn’t seem to need to compress as hard either that or the tech wasn’t as big a sadist.
When I was little I had a lot of trips to the doctor and my reward for going through it with minimal fuss was a See’s candy sucker. So I promised myself one on the way back. Union Station has a tiny See’s candy stand and a boatload of their suckers. Strangely the most pillaged portion of the sucker display was the chocolate one. I treated myself to 2 since I had 2 procedures. I figure I earned it big time. If you haven’t ever had one and you are out here in California find a See’s and treat yourself. They are hard candy and last forever if you don’t bite it. Anyway it was the only way Mom could get me to cooperate as a kid if something was going to hurt a lot. Like the time I was so skinny and got a shot and the doctor put it through my whole arm and I saw it come out the other side. I remember looking at the doctor and just staring at him while he took it out and tried again. I didn’t cry but I remember wishing him really bad things. He was in his 80’s by then and his son was the one who delivered all of us so it was a family enterprise.
Anyway, I took the trains and the Orange Line back to work and now I wait for someone to read the films and tell me why I hurt so effing much.
For those who are new to this blog, one of the people I love best in the world has ALS. Her ALS has progressed to the point where she cannot breathe on her own and is on a ventilator. She can’t cough or blow her own nose any longer. This puts her in great danger if someone exposes her to cold germs or other viruses because she no longer has those bodily defenses and defenses they are since they are the main processes the body has to rid itself of toxins that enter the respiratory systems. And it appears she developed bronchitis because someone had a cold and was near her. So there was a trip to Emergency yesterday because she had difficulty breathing even on the ventilator.
She is dependent on modern medicine and while herbs and homeopathics are excellent in theory in pagan practice. They aren’t great for someone who can’t verbally indicate clearly to her caregivers what exactly is wrong. ALS patients eventually lose the capacity for speech because of the neuromuscular changes to the diaphragm, lungs, mouth and esophagus. No muscles, no speech eventually. I suspect evenly scented candles are out now since even a fire in fireplace can irritate someone who can’t cough.
So thank you if you sent energy yesterday, it was much appreciated by M and all of us who love her dearly. Hopefully, you never know anyone with ALS. It’s a terrible disease and a robber and a thief as you are very mentally aware as your own body becomes your prison.