Okay, we're taking another diversion here, because I got the document I was waiting for. It was a little different than what I'd understood, but still, I need to be straightforward, because if I'm not (and I mean not only about this, but in general regarding this blog) eventually I could be discredited. It's possible that I could be discredited anyway, because I'm not telling you everything because 1) I don't have enough space here or time to write that much either, and 2) I don't remember everything (I don't have a photographic memory, for example). I am of the persuasion that neutrality is generally a myth, including in research, despite the best efforts to reach something reasonably close to neutrality. And since I'm writing about myself it seems I'd be even more foolish to claim absolute neutrality; I am an interested party in my life story, after all. One thing that might run in my favor, regarding neutrality I mean, is that I'm at a point in my life where I feel I don't really have that much too lose and I'm not particularly dependent on anyone either, if these things weren't true it'd be much harder to even attempt neutrality.
So here goes (my fibromyalgia stress levels are rising as I write this):
***
Because of what happened in Vienna (1987-1989) I have to deal with the issue of my psychological wellness. I'd rather begin that discussion, however, before we get to that point in my biography. So this is it, and I feel like a lot is on the line. I'm going to skip over my time in Vienna (1987-1989) altogether at this point, so you'll get the before and after picture and have to wait till another post (or posts plural) to learn about the Vienna situation.
***
The first time I remember any mention regarding my mental health was at a visit to my primary care physician (PCP), who had been my PCP since probably junior high, so at least 10 years, despite not living in Seattle part of that time. I was back living in Seattle after I finished my second year at Bible school, however, and it was on a visit to him, maybe the August, 4, 1986 one which was between deputation trips and after the June 1, 1986 visit to the Boulder, Colorado Community Hospital where I was diagnosed with asthma and given an inhalant to use, that my primary care doctor commented how I'm able to take a lot of stress. The last inhalant prescription record I have is for that period is Oct. 1986. I don't think I was using it when I left for Vienna, however. I think my primary care doctor thought the asthma was stress-induced.
I don't remember any suggestion being made that I needed any psychological treatment at that time, despite the stress and physical effects of it. I'll talk about this more later, but I hated public speaking and doing deputation was very stressful for me because of the public speaking aspects of it. I eventually became an instructor, but in 1986 I still hated public speaking.
It may also be worth noting that this doctor treated my whole family, including some extended family members in the area, and he knew about psychological issues in the family, but still didn't indicate that I needed any help at that point.
***
In 1989, after my return from Vienna, I did go to some counseling (I have 2 detailed receipts from those visits). The indications on these receipts was the International Classification of Diseases 309.28: "Adjustment disorder with mixed anxiety and depressed mood". I don't have any indication that I was on any prescription medicine for this diagnosis. I don't remember being on any either at that time, despite the indications of my journal of the time showing that I was going through a lot of struggles as a result of my experiences in Vienna.
***
In 1998 I was diagnosed with hepatitis C, which was first noticed by the Red Cross when they screened the blood I'd donated. On Jan. 6, 1999 I signed the agreement with the Pennsylvania State University-Hershey to participate in the Schering-Plough Phase II trials of PEG Interferon. I was in treatment group III and received 1.5 mcg/kg QIW + ribaviron 1000/1200 mg/day for 4 weeks, followed by PEG Interferon 0.5 mcg/kg QIW+ribaviron 1000/1200 mg/day for 44 weeks. No adjustments were made based on my having genotype 2a of the hepatitis C virus, which has an excellent response rate, especially compared genotype 1, which is by far the most predominate genotype of the virus in the USA. (I'm sure I'd contracted it by blood transfusion in Russia.) A week ago I was telling a university-based gastroenterologist about this, and in the middle of my story said I was taken off the medication after only 8 weeks he interrupted me to say that 8 weeks is normal for genotype 2a. But I was supposed to be on these medicines 52 weeks.
Anyone who is familiar with interferon knows that it's one of the drugs that is infamous for its side effects, although it's used in situations where the benefits generally outweigh those side effects. So, for example, a little discomfort for a few months is preferable to having to get a liver transplant, and hepatitis C is the number one cause for needing a liver transplant in the USA. I gave myself the interferon shots every Friday, and my last shot was July 2. My semi-weekly trips to Hershey and the lab tests done there show that my ALT readings were down to 13 by June 7 and my AST readings were at 19, well within the normal range a month before I had to stop taking the medicines.
It was a 2 hour drive for me to Hershey, and I began to have side effects that hindered my ability to make that drive. On May 24 I tried to make that drive, but was too weak, so I had to stop at Lewistown (maybe 1/3 of the way there at the most) to their e.r. The discharge paper doesn't give a diagnosis but tells me to follow up with the doctors in Hershey. I found a friend who very kindly drove me to Hershey the next day to keep my appointment.
I have a reliable source, the US Federal Drug Administration (http://www.fda.gov/cber/label/pegsche080701LB.htm) printed out July 12, 2002, that lists a whole slew of side effects of those I experienced: fatigue/asthenia, constipation, wrist pain (thyroid tests were negative), concentration impaired. This text also says that it has caused fatal and nonfatal bleeding colitis.
Another publication from SafeMedication.com (Aetna links to it, for example) lists these relevant symptoms (some overlap from above): trouble in thinking or concentration, metallic taste, fever, loss of appetite, nausea or vomiting, unusual tiredness. One side effect that I think I was close to was "stupor, obtundation and coma". This document lists the loss of concentration and coma side effects as "indicating need for medical attention." Under "Medical considerations/Contraindications... Risk-benefit should be considered when the following medical problems exist:... Psychiatric conditions, sever, or history of..."
The following are excerpts from my health journal, which I wrote August 4-5, 1999 (remember I had the shots each Friday):
5/23 [Sun.] "Over the weekend I started feeling wors[e]. I think the fatigue and weakness first started and then on Sunday evening I had trouble following a conversation with a couple I was meeting with.
5/24 [Mon.] "Try to make it to Hershey appointment. I woke up feeling weak and called down to Hersey and left a message on their voicemail saying I was leaving, but I felt badly and so wasn't sure I'd make it or not - just to warn them. I walked across the street to the post office and was in tears from weakness. I got in the car and found that as long as traffic was smooth I could deal with it. But with the concentration and all, when I got to Lewistown, about 30 miles, I realized it probably wouldn't be safe for me to try to drive any farther. So I went to into the emergency room. They didn't find anything, taking blood tests.
5/25 [Tues] "Tet ride to Hershey; ALT first reads in normal range... I remember feeling like opening a juice bottle was difficult, because of lack of strength.
5/28 (Fri) begin lower dosage of interferon per schedule.
5/28 - 6/21 Feel fine; work overtime on research project. I really was feeling pretty good and even following [i.e., immediately afterwards] administration of interferon I had little side effects at this time. Mainly appetite change continued.
6/22 [Tues] doing data processing all day at temp job; drink over 8 quarts of liquid; in evening not able to read for working on research project. I couldn't believe I had this insatiable thirst and just was a sieve - but didn't feel bloated at all... Then in the evening I couldn't read the text I was working on, data analysis of case studies. This started my trying to find what I could do. The next day I tried knitting and my hands started aching, what seemed like carpel tunnel syndrom to me, by mid afternoon. I don't remember when I started having trouble with constipation. The doctor had approved me taking meamucil and Senokot-S (the latter as needed). I also started drinking prune juice.
6/24 [Thurs.] condition worsens, so that Hersey & State College doctors order me off meds. I don't remember what happened on the 28th and 29th. But on the 30th I slept a lot of the day and later afternoon, I think around 4:00 or so, I woke up feeling like I was going to pass out, that what I called it at that time. I was really scared and called my parents in Seattle. They had people calling me the next few hours. I managed to get through to a local help line to have them call me throughout the night as well. Sometime in the middle of the night - perhaps 11:00 or so, I felt my legs getting weaker. With drinking so much I often had to get up in the middle of the night. So the next time they called I asked them to stay on the phone (I had a cordless phone) while I dragged myself across the floor to the bathroom. My arms were still strong at this point. I got about half way to the bathroom (ca. 15 feet) sitting on my rear and pushing some with my legs, but mostly pulling with my arms. Then that was too much for my legs so I rested and asked them to call back. I didn't use my legs the rest of the way and just dragged them. That's basically how I got back to bed too. Then by morning my arms were weak and I called 911. This was the worst it got. I also never had the feeling of going to pass out again either. I was in the hospital 7/1-2.
This goes on like that and after the day by day account I discuss a few issues in more detail and what happened even after I was taken off the interferon. Even at the end of July I was still having concentration problems, so I had to cancel a conference presentation I'd been accepted to give, and since my physical strength/health took even longer to recover reliably, I had to cancel a Christian Peacemaker Teams trip to the West Bank too.
I actually ended out being in Centre Community Hospital twice from the Interferon. The first discharge paper, dated July 2, 1999 (I wasn't admitted that time, but was only in e.r.), gives the instructions to see my PCP in 2 weeks and take Prozac 20 mg once a day. The second discharge paper after I'd been in the hospital 5 days, dated July 9, 1999 only says to avoid alcohol and call to make an appointment with my PCP. The second time I was in the hospital the ambulance had to take me there and I was carried out on a stretcher. I clearly remember how hard it was to hold the phone as I was laying in bed, I was so weak. In e.r. they said they didn't have a detox unit (!) so the best place they thought of for putting me was in the psych. ward. By that time I was willing for anything just to recover from this horrible ordeal. I agreed and I had to attend group sessions but other than that I say my primary care doctor, the hepatologist and neurologists, as I started developing ticks that later developed into nocturnal myoclonus that was a whole other ordeal that still sometimes bothers me, as does the IBS that I never had before the Interferon.
But the point is that one of the things Interferon is famous for is its psychological side effects, especially for people with prior mental health conditions. After all was said and done, I was not treated for any mental health conditions nor diagnosed with any. And that was after several days in the mental health ward, where there was plenty of opportunity to diagnose me with something.
***
I've been working on this all afternoon and it's involved me looking for and switching between different sources of information, but from here on it will be a lot easier. I do have to take a little break - for laundry and other things.
I was hoping to go to the "Y" today, but I got so caught up in doing this that it's now too late and they've closed. I have to exercise for my fibromyalgia, so I'll do some things from home and hope to go tomorrow.
Now we'll take another fast forward jump to 2007.
***
After moving here the first time in the fall of 2006 I soon began having a lot of health problems. Along the way I saw neurologists and one neurologist sent me to have a neuro-psych evaluation done because of my occasional poor concentration complaints.
Here are the summary comments from the neuro-psychologist (M.D.) that carried out that April 24, 2007 study:
"1. Relatively unremarkable neuropsychological study.
2. Estimates of her current level of intellectual functioning lie in the above average to superior range.
3. An isolated finding felt to be a relative inefficiency was noted in initial consolidation of a list-learning task. This may be secondary to some attentional issues.
4. Memory functions remain well preserved with no sign of decay of information over time.
5. This profile does not follow a pattern which would suggest either cortical of frontal0subcortical pathology at this time.
6. Mild neurobehavioral features of anhedonia, decreased energy, hypersomnolence and mild pessimism are noted. Her level of severity in this area does not meet criteria for pharmacologic intervention.
7. Monitoring of her cognitive status with repeat neuropsychological examination can be conducted as felt to be clinically indicated."
***
Psychology comes into play in my current life because of the fibromyalgia. When I was up north living in my brother's apartment, I didn't wanted to go to someone good to treat my fibromyalgia, because doctors are all over the board on what they think about it and how they treat it, and I was spoiled by having a good doctor down here. Where I was living up north was hicksville, and while there might be some very good small town doctors in this case I wanted to find someone who might be more of a specialist. I found out about the NYU-Syracuse Pain Treatment Center and after about 3 months (starting before I moved up there) I finally got accepted into their program. So they were the ones who primarily treated my fibromyalgia during that time. On my last visit to them in December they asked if I'd ever behavioral training therapy for my fibromyalgia. I hadn't, but had heard of it, so agreed to try it out. We didn't know at that time that that was going to be my last visit to them at Syracuse, but they referred me to someone outside the university that does this kind of thing.
My first appointment was for Dec. 23, 2009, but I found out at the sleep study Dec. 21 that I had a fever, so I called on the 22nd to reschedule for when I was better. He called me back on the 23rd just and hour or 2 after I had that fateful meeting with my brother in which I was evicted, uninvited for Christmas, etc., etc., so, as you can imagine, I was pretty distraught, so I don't know what he thought of me based on that phone call, but we agreed to meet the 24th, despite my fever, because of the turn of events in my life. I did buy the behavioral therapy book he uses with his patients, but we ended out just talking about my family and the current situation. Although it was a 2 hour drive, I saw him a few times. On the 24th, after I got home I had a 101.8 fever.
I agreed to take the MMPI2 at the last meeting I had with him and I was driving to a community health talk on balance being held at a local hospital when he called. He said he preferred I'd pull over while we discussed the results. In the phone conversation he said there was nothing particularly bad in the results, just some possible anger. There was nothing demanding medical intervention, though. And under the circumstances I was in I think it would have been abnormal to not be angry.
This is what this doctor (Ph.D, P.C.) says in writing about my psychological condition:
"[Meg] had two significant elevations on her MMPIw clinicals subscales. Scales 3 and 4 were elevated. Individuals with her profile type are suggestive of having problems with emotional control. She may have tendencies to be passive-aggressive and impulsive. She may overuse denial to control aggressive impulses and may have special difficulty controlling her anger. Under stress, she may have somatic complaints. There were no significant diagnostic considerations stemming from her profile, but rather just identifying potential maladaptive personality traits."
You caught that, right? "[N]o significant diagnostic considerations...'!
***
I even have MORE evidence concerning my emotional condition.
Upon returning here, I found that my fibromyalgia doctor now has a special fibromyalgia clinic which includes the attentions of a ... you guessed it... psychiatrist. Today I just received a report from him, and I'll just draw from the summary part. At the beginning this report, the psychologist notes that he is making these statements after just 2 hours with me (in addition to the testing).
"Premorbid intellectual functioning is estimated to be within the average range based on a traditional measure (TONI-III...). Performance on effort testing indicates good efforts which suggest the cognitive results are an accurate portrayal of [her] functioning.
"Ms. [Capalini's] current cognitive abilities are consistent with [her] estimated premorbid ability across cognitive domains that include processing speed, visual abilities, motor skills, and mental flexibility. [She] exhibited relative weakness in processing speed and memory. Ms. [Capalini] exhibits significant difficulties in recalling learned information. However, Ms. [Capalini] has the ability to recognize learned material.
Ms. [Capalini's] responses and behavioral observations suggest that [she] may be well functioning but has a tendency to downplay psychological stressors and emotions. [She] appears to experience anxiety related to [her] medical conditions and physical limitation, which elicits feelings of inferiority and guilt...."
He goes on in this vein using his professional judgment to predict possible areas I might need work on, such as asserting myself in conflict situations and receiving help from others. His recommendations are based on my test results and a two hour session I had with him prior to the testing, although I also see him every time I also go in for my regular fibromyalgia appointments as part of the fibromyalgia clinic.
***
That's all for today. I've spent a good part of my day on this and I do have other things to do. You're going to need to remember this for when I get to my 1987-1989 time in Vienna, because you see all the documentation I have that I am pretty emotionally stable, even in the face of the odds being against me, such as while taking Interferon and being confronted with the health and other problems I have currently. This document both pre- and post-dates Vienna, including immediately before and after.
~ Meg
