Advocating For Myself


Advocating For Myself


On Tuesday it was my turn to see our GP. My partner wanted to come along, and I just let that ride. Then she decided she needed to nap instead. I cheered inwardly, because it meant I could speak privately with our doctor without a fuss.

The appointment was a little strange, and we kept jumping back and forth among the topics, which were as follows:

1. I am not impressed with my GP's filing system.

Excerpts from the transcript:

Dr. N: Have you ever had blood transfusions or hepatitis?
Ejourneys: Blood transfusions when I was seven.
[Dr. N talks about testing me for hepatitis.]
Ejourneys: I was already tested for hepatitis. Came out negative.
Dr. N: Did I test you?
Ejourneys: Yes. I was recently tested for hepatitis. In fact it was back in May, if not in January.
Dr. N: Hepatitis you probably haven't had with me. You might have had it someplace else.
Ejourneys: No, this was recent.
Dr. N: Who did it?
Ejourneys: I believe it was done in this last May's blood work. I have the printout --
Dr. N: The blood work was just a CBC, I just put in the garbage. I didn't order a hepatitis profile on that. It was just a CBC.
Ejourneys: I will check at home, because I -- I scan all that stuff into my computer. I'm pretty sure I was tested for hepatitis and that it came out negative.
Dr. N: Well, I don't have a copy of that.
Ejourneys: I mean, it makes sense to test me because my mother had hepatitis. That was before I was born. But I believe I've been tested.
Dr. N: Oh, here it is. Oh, it says hepatitis panel. Did you come and pick up a copy from here?
Ejourneys: No, I picked up a copy from .
Dr. N: Let me have them print me up a copy. One minute.
Ejourneys: Okay. And if they can't do it here, I can send you one from home.
Dr. N: I can get it on the computer. I had them print it out. They didn't send me a copy of it.

Boy, if that doesn't reinforce my drive to get and scan our records! Holy crap. Dr. N was able to get a printout from the computer, but I offered to send her a copy of mine because I wanted to be helpful. ;-)

Back in 2008, she had examined my partner, detected uterine fibroids, and referred my partner to an ob-gyn. That referral had led to my partner's hysterectomy in Feb. 2009, and we had specifically requested that the records of that be sent to the GP. Many months later, the GP called and asked if there had been any follow-up from her initial referral to the ob-gyn. o_O Supposedly, she had never received the hysterectomy records!

Hmm, maybe I should start doing replacement GP-shopping.

PS: I learned pretty early on that if I picked up blood work results from the GP (13 miles from home), they would charge me a dollar a page. But there was no charge when I picked it up from the blood draw facility about a half-mile from home. No-brainer there.

2. I explain the facts of life to our GP.

I'd been talking about caregiving at this point.

Dr. N: She has no family at all? You are it?
Ejourneys: I'm it. She has family. They are uninvolved. They don't even call.
Dr. N: How did you know her, or whatever?
Ejourneys: We've been together since December of 1995, when she -- it was before she really started showing a decline. And I have no family.
Dr. N: power of attorney for each other.
Ejourneys: I have power of attorney for her. Considering her condition, I had to take her off my POA. My POA is now with a friend.
Dr. N: Has she ever, your friend, ever seen a psychiatrist? She probably needs to be --
Ejourneys: I'll give you the whole rundown if you've got the time. She's been -- she has seen three therapists down here.
Dr. N: Mm hm.
Ejourneys: None of them was a psychiatrist. The first one saw her for two years and then went on sabbatical. Passed her on to a second, who gave her a preliminary diagnosis of schizophrenia, disorganized subtype, and then was maxed out of . then went to a third therapist of her own choosing, who saw her for a year and then retired.
Dr. N: If you want, I can refer her to a psychiatrist.
Ejourneys: She does not want to go. I have raised this issue with her. She went to one psychiatrist. I called around; this was when we were trying to get her disability benefits, which she cannot get for -- it's a timing issue, unfortunately, even though she has MS. We saw up in . , with two weeks' lead time, admitted that she had only glanced at [partner's] records. She went strictly on what was saying. was giving her bodily complaints.
Dr. N: Yeah.
Ejourneys: She prescribed citalopram, low dose. took it, had side effects, decreased the dosage. experienced brain shock, or as put it, it felt as though a cherry bomb were going off in her head. She suffered falls. And when I learned that had not in fact gone over [partner's] records, we high-tailed it out of there. Unfortunately, had been recommended to us by two other doctors, and the reason why we went to her, in addition to those two recommendations, was because hardly any psychiatrist was willing to see someone who was applying for disability benefits. We have since learned -- we've been to four disability lawyers -- that because of the timing, is ineligible for disability benefits.... I cannot force to go to a psychiatrist or to another therapist....Unfortunately, one difficulty that I've been dealing with is that [partner's] perception of her medical condition differs from mine, differs from doctors'. But there is only so much that I can do, given my limited legal authority.
Dr. N: She has some issues. She tends to diagnose too many things that are not there.
Ejourneys: She has a bachelor's in biochemistry and a master's in immunology, to give you an idea of the type of person she used to be.
Dr. N: She's an obsessive-compulsive kind of person.
Ejourneys: Yeah, she was diagnosed with that as well. Now, she did see Dr. . He was a specialist to whom we were referred by . According to , has an unusual type of MS that acts like traumatic brain injury. Most of her damage is in her prefrontal cortex. She had extensive neuropsych testing at . And her test scores ranged from the second percentile to perfect. So it's really spot damage. What that means is that she has a lot of delusions, a lot of verbiage to try to back up those delusions. One that she keeps insisting is that in 1982, when most likely her MS started materializing, she argues that the doctors deliberately gave her MS through CT scan X-ray brain surgery. She's due for an endoscopy on Monday. She's worried about that. She's calling around because she thinks the contrast media used gave her varicose veins. So whether or not she actually goes in for that endoscopy is anyone's guess at this point.
Dr. N: What if she gets so disabled that you can no longer take care of her? Does she have long-term care insurance?
Ejourneys: No. I've consulted with my lawyer, and basically , as sick as she is, is not sick enough, especially since her verbal abilities are so high. According to her neurologist...he can tell when she's on her best behavior, is the way he put it. And according to , the brain damage that has can be and is mistaken for schizophrenia, because that's how it affects her brain. says he cannot tell -- everything is so deeply intertwined, he cannot tell where her MS ends and her mental illness begins. And basically it's a waiting game for me. I have to just wait and see when-slash-if she becomes sick enough so that a competency hearing is called for. It is not yet called for. She is not yet sick enough. She can do her ADLs. And as long as she can do her ADLs --
Ejourneys: I should let you know -- I think, when was here in June, you were mentioning Medicaid. And just to let you know that --
Dr. N: Did you apply?
Ejourneys: is not eligible for that. Unfortunately, I had given her savings in case anything happened to me. So she is over the maximum.
Dr. N: [inaudible; something about being unable to go to a nursing home unless one is on Medicaid] Unless you are cash-free.
Ejourneys: Yeah.
Dr. N: So right now she's okay. But I'm just saying long-term.
Ejourneys: Yeah. You know, it's a one day at a time thing.

There's a reason I had to do all this explanation. After my partner's barrage of tests in 2011, I had a thick stack of records that I offered to give to Dr. N. Dr. N had refused them, showing us her folder on my partner, which was already several inches thick.

One more reason I think it may be time to go replacement GP-hunting.

3. So, why am I here again?

I'd had a complete physical back in January of this year. Our GP wanted to see me half a year later because my lymphocyte count then had been at 50.8. It read 53.1 in May.

Dr. N: One thing was, you were a little high on on your lymphocyte count, so we repeated that. Remember?
Ejourneys: Mm hm.
Dr. N: That came up high again.
Ejourneys: Okay. What does that mean?
Dr. N: Well, that means your bone marrow is making more lymphocytes. See, the lymphocytes are supposed to be below 43, 45.
Ejourneys: Okay. You say the bone marrow is making more lymphocytes. What are the implications of that?
Dr. N: It can be sometimes a low-grade kind of leukemia or low-grade kind of lymphoma.
Ejourneys: Okay.
Dr. N: If you really need to get to the bottom of it, you need to go see a hematologist and do a bone marrow biopsy.
Ejourneys: Okay. Is it high enough to warrant that kind of thing?
Dr. N: A lot of times we don't treat it. See, it was like that in January and this is May, four months later. Last year was still like this. In 2009 it looked okay.
Ejourneys: Okay. Could that be as a result of -- of various stressors? Because after 2009 was when things really started getting rolling in my caregiving and was going to all sorts of specialists --
Dr. N: Every six months I can follow it up. If the lymphocytes start going up to 70-plus, then you need to.
Ejourneys: Okay.
Dr. N: If it stays around 50, I'll keep monitoring it.

I am really happy my partner wasn't with me! I'm sure she would have freaked out. After I got home she suddenly noticed a red spot on my shoulder and another on my back -- the kind of thing one gets with age -- and got worried. She worried because she thinks she has ataxia telangiectasia (a rare neurodegenerative disease that first manifests in early childhood, and for which she has not been diagnosed), due to her own red spots, so now she wonders if I might have it. I told her I'm not worried.

4. Not with my body, you don't.

I've had invasive testing procedures in the past. They haven't bothered me in general, but a colonoscopy is different (I explain why in this entry). In short, my abdominal surgery when I was a kid places me at an increased risk for something to go very wrong.

Every time I see Dr. N, she brings up the colonoscopy. Tuesday was no different. On Monday night I printed out the following to bring with me:
a. "Colonoscopic perforation: Incidence, risk factors, management and outcome," in World Journal of Gastroenterology, Jan. 28, 2010.
b. "Screening for Colorectal Cancer" from the U.S. Preventive Services Task Force, mainly for its section on fecal DNA testing.
c. "What are the risk factors for colorectal cancer?" from the American Cancer Society.
d. My genetic data printout for colorectal cancer risk, from the site 23and Me.
e. Stool DNA test info from the Mayo Clinic.
f. "Stool DNA test for colon cancer not yet cost-effective," from Reuters, Sep. 20, 2010.
g. Policy statement on Stool DNA tests from my insurance carrier.
h. "CT scans are the best alternative to colonoscopy to investigate bowel cancer symptoms," from Cancer Research UK, Feb. 14, 2013.

From item (a), above: "Although CP is a rare complication, it is associated with a high rate of morbidity and mortality. This unpleasant complication could result in operation, stoma formation, intra-abdominal sepsis, prolonged hospital stay, and even death."

That's not good for anyone, let alone a solo caregiver with no backup for herself, never mind for her caree.

Dr. N: What about colonoscopy? Do you have the paperwork?
Ejourneys: I have the paperwork and there's something I want to show you here....As far as the colonoscopy for me is concerned, this [inaudible; both of us speak at once]. The thing is, though, "other risk factors include previous intra-abdominal surgery." You've seen this. This is a serious business, as well as more risks for women than for men. So that, combined --
Dr. N: That is something you have to decide whether you want to take the test and do it, or you don't want to do it.
Ejourneys: Exactly. In terms of risk factors for lifestyle, none here for polyps , none, none. In terms of other people in my family with cancer, parents, no cancer. Paternal grandmother died of pancreatic cancer.
Dr. N: doesn't mean anything.
Ejourneys: Right. None down the line. Ashkenazi, which is typically higher, but --
Dr. N: That is something that you decide, whether you want to do it or not.
Ejourneys: Yeah.
Dr. N: I have thousands of people having colonoscopy. Maybe one in 10,000 have a perforation.
Ejourneys: Exactly. Except that they don't have this , okay? Three-point-five out of 100 women, my genetic data is lower than the average genetic data for women in my population. So, less of a risk. Lifestyle, less of a risk. I was also looking into alternatives, such as fecal DNA.
Dr. N: Who's going to pay for that? Medicaid --
Ejourneys: I'll tell you something. Looking at the cost of fecal DNA over here, which the Reuters report is saying right now it's running about $795 -- that was less than I paid for [partner's] colonoscopy when she had it last. So I'm certainly willing to pay for fecal DNA for me because it's a safer alternative.
Dr. N: I don't know the [statistics?] -- you can talk to the gastroenterologist. Go for a visit, talk to them, and see what they say.
Ejourneys: Okay. And this is what says. So they're considering it as well.
Dr. N: But if you do it and you find something, then you have to go get a biopsy.
Ejourneys: Right.
Dr. N: They can't do a biopsy from that.
Ejourneys: Exactly. And I'm willing to do that because of --
Dr. N: Talk to the gastroenterologist. They should be able to guide you with that.

It occurs to me that Dr. N interrupts me almost as frequently as my partner does. :-)

When I got home, the trash can my partner had put out the night before had still not been emptied. It was still before 5, so I called our utility while she spun her latest theory.

Partner suggested that our trash hadn't been picked up due to our collection bottle of used homemade salad dressing. (I eat my salads with tuna or chicken, so I don't want that meat and fish in the excess dressing hanging around.) The utility has taken those bottles before without a problem -- but that had been before my partner's recent stint in the ER.

What does the ER have to do with used salad dressing? I'm so glad you asked. :-)

As I reported here, my partner is convinced the ER nurse was an undercover cop who was looking to nab her. My partner carries salt with her in an old film canister, and she believes the undercover nurse cop thought it was cocaine.

Therefore (my partner reasons), our bottle of used salad dressing must have been mistaken for some kind of dangerous chemical that the trash collectors didn't want to touch.

(Hey, NSA! *waves* Yoo-hoo! I hear you do a lot of surveillance. So, if you're listening in, would you please send an agent over to my house? Someone who could maybe sit down with my partner and reassure her? She probably wouldn't believe the reassurances anyway, but I could really use a spell with her sharing all her theories with somebody else. Kthxbai!)

PS: On the phone, I was told that the trash truck would return on Wednesday for our garbage.

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EJ, I also hope that you can find a real GP just for you. I can't imagine enduring that kind of visit and your patience remains stellar! I also cancelled my colonoscopy appt and decided enough is enough and definitely not warranted. My sister is a nurse and will Not have one. I applaud your decisions and glad you keep the records like you do. That record keeping will probably save your or your partner's life, you are the ultimate caregiver! I am cringing because Elly is going to a new GP Saturday while I am on vacation. NurseySister will be taking her so she is in good hands but I still am frustrated with the timing- Dr office called and changed the appt because they had an earlier opening. It never occurred to Elly that she should check with me to see if it would work. Best wishes and I'll bet stress if working on that bone marrow issue!


Thanks for your post I can totally relate.\r\n\r\nI agree.They don't listen! For goodness sakes that is a major part of their job. I changed physicians because I finally fond one that listens plus he laughs at my sometimes dark sadistic humor about caring for my mom.


EJ sorry I didn't read all of this but you deserve to be treated with kindness and respect . . and to have to put POA for someone else besides your partner must hurt! And I hope you can practice what you said to me which is you deserve privacy, especially when you are giving yourself your own Doctor visit. Mixed emotions I'm sure. And I particularly like when you say not with my body you don't! And also to the government saying 'You're not sick enough to get help'! Heard a long time ago . . . \"Life Law vs. Legal Law\". OK I guess I really related to this Post! Whew! Sorry you're going through all this and thanks for sharing! ((((((((hugs)))))))) now go play your 'autoharp' is it???\r\nil