Week in Review 23 January 2010

There are subjects that I have not caught you up on since returning to work full-time. I am going to use this week in review to address the various issues that actually encompass more than just this past week.

Iron Infusions: The study included receiving 1000mg of IV iron infusions. I received 200mg Mondays and Wednesdays for 5 days. Throughout the process, the clinical specialist drew blood to check my haemoglobin and ferritin levels. This study will go on for a year although no more iron infusions are to be given. All subsequent visits are geared towards monitoring my blood levels to see how I fare over the course of the year. On day 35, after the final infusion, my haemoglobin only rose to 12.1 (normal is around 12.3-16). However, my ferritin level (one of the key indicators in my case) rose from 5 before the study to 96. While I am pleased with the ferritin level, I still have borderline iron deficient anaemia. I am disappointed that my haemoglobin did not rise any higher. I am curious to see how the blood level results will be over the rest of the year. My savings grace is that I have not had to pay for any of this as being part of this clinical trial, and the added bonus is, once I have completed the yearlong study, I will be compensated for my travelling costs.

Vitamin and Mineral Deficiencies: If you recall, I began having symptoms of ataxia on 13 November 2009. It began with being unable to keep my balance then progressing to ocular involvement called nystagmus then to short-term memory loss. I failed certain neurological tests (most notable the Romberg test. The combination of all three symptoms indicated that I had Wernicke’s encephalopathy that does, in effect, eventually causes organic problems with my brain. If left untreated, the transient symptoms will become permanent. It was suspected that mine was caused by a vitamin B1-Thiamine deficiency. As a result, my GP decided to run a huge panel of vitamin and mineral blood work. The results showed that my B1 levels were undetectable as well as my Selenium levels (essential for the proper functioning of the immune system). I was ordered to start taking 100mg of B1 twice a day and 200mg of Selenium once a day. After six weeks, the repeat blood tests showed marked improvement and my balance had almost come full circle, although I still have some ocular involvement and short-term memory loss (my brain is healing slowly). Another level that was far below normal was vitamin D. Instead of taking an OTC version of vitamin D, my GP wrote a prescription that I am to take once a week for eight weeks, then once a month forever. This does not even include the fact that I have to give myself 1000mcg vitamin B12 shots monthly forever. My doctor essentially told me that I would be taking these vitamins and minerals forever, along with a multi-vitamin that I am supposed to start taking. Coupled with all of my bipolar medications and the ones for my continued high blood pressure, I am swallowing a horde of pills a day.

Individual Therapy: Now that I am no longer in group therapy, I have starting seeing an individual therapist. 20 January was actually my third visit with her following the intake assessment and one follow-up appointment a couple of months ago (my group therapy took precedence). This visit I determined that one of the first factors I had to deal with was my borderline personality disorder.  You’ll note further down in the link what the causes are—I meet all of them. In examining the causes, I decided to deal with my disruptive family history first. I have discussed at length in previous entries how I have been treated as a pariah at holiday gatherings these past seven or eight years always celebrated at my niece’s home. She patently exclaimed that I was not welcome the first time she hosted these events. I ended up attending, even though I had not received an individual invitation, as a result of my nephew’s insistence. He said, “Alix, family is family. You belong there.” When I showed up at the front door with my nephew, my niece clearly displayed her anger and let me know I was not welcome, but she could not refuse my entry because other people had already noticed me, so she was stuck. The entire time, even my mother showed her displeasure, I was uncomfortable. Always the queen of protocol, she said I should not have come because I did not receive an invitation. To this day, I have no idea why my niece hates me—my mother will not volunteer any information and my sister even told me not to confront her daughter. So much for my supportive family.

Getting back to my early years, I was sexually abused at age five. Upon my mother and older sister finding out, my mother shook my shoulders and told me I was never to ever speak of this to anyone. This was during a generation when it was not understood nor dealt with. I was made to feel as though it was my fault. The family dynamic changed forever after that. I felt abandoned by everyone because no one would help me with all of the shame and guilt I felt. Years later, those memories were buried during the haze of my years-long addiction to smack and coke (I used to shoot speedballs). I eventually cleaned up and have been clean for 23 years. However, during my detox period, all those memories came flooding back. I worked up the courage to confront my mother about the sexual abuse and at first, she denied it ever happened. Then, with further insistence, she simply said it was in the past and refused to discuss it with me ever.

A few years later, my parents had a huge celebration for their 50th wedding anniversary. I was living out of town, but my mother wanted my son and me to attend. I simply asked if that particular family member who abused me would be there and she replied yes. Then she told me that I was only welcome if I did not create a scene. I promised I would not (always being the dutiful little girl trying to find that ever so elusive but never found approval). However, I was very anxious about seeing this family member (whom I shall refer here as L). I had not seen L since the memories surfaced. I was not sure how I would react. When I saw him I felt a flood of emotions wash over me and I was not sure I would be able to control myself, but I remembered the promise I had made to my mother. He acted as if nothing had ever happened. I kept my limited contact to perfunctory responses and immediately found someone else with whom to interact.

The next two obligatory times I had to be around L was my father’s funeral and my nephew’s first wedding. I could not keep my distance as far as I wanted because these events were small family gatherings, but I was determined never to attend any events where he would be present with the exception of my mother’s eventual funeral.

Or so I thought. My sister called me this week and told me she wanted to do something special for my mother’s 90th birthday in September. She wanted everyone to be there. Not only will I have to deal with my niece (a favoured one as she has produced my mother’s only great grandchildren), but there is an outside chance that L will be there. My sister did mention that L had declined because he had already booked a hike in Italy and that was his priority. To tell you the truth, that pissed me off. Isn’t my mother’s 90th birthday, an occasion that will never come again, something that should take precedence above all else? Tell me that he did not know that the week he booked his hike was during my mother’s birthday and that it was her 90th. How callous can someone be? Of course I already had a very poor opinion of him (to say the very least), but this was the last straw. As oxymoronic as this sounds, I hope he changes his mind, if only for my mother’s sake.

So, getting back to my therapy session…I made it a special point to tell P that this celebration would be coming up in September, one that is creating enormous anxiety for me, even now. I need to process all that has happened since childhood. Since the event is not until September, this will give me quite a while to try to come to terms with everything. I wonder what the process will be concerning trying to deal with everything. I can only afford to see her every two weeks, so I hope we can accomplish a lot.

My Psychiatrist: I am now seeing him every three weeks—a far cry from weekly appointments along with daily phone check-ins. R seems pleased with the state of my bipolar disorder, and so am I. The cocktail he has me on (Lamictal 200mg 2/day, Geodon 80mg in the morning and 240mg at bedtime, Provigil 200mg 2x/day, Lexapro 40mg daily, Ativan 2mg 4x/day, and Ambien 20mg at bedtime) has been very productive. I am being cautious about the Lexapro since it is an anti-depressant. In bipolar patients, while these types of drugs can battle the profound depression I found myself in, I have to be aware if I progress to any mania since these drugs can produce this side effect. I am monitoring this very carefully. I do not want to mess with this cocktail as it is servicing a precious need of keeping everything in balance right now. However, R has discussed getting me down to a maintenance cocktail that would probably result in taking me off some of this medication. I do not think I am ready for this yet. It been too soon since I tried to commit suicide. While I have made great strides, I still feel as though, at times, I am teetering on the edge. Even though my next appointment is not until 04 February, I know I can call him at any time. He always calls me back and spends however much time I need without the cost of an office visit. I am very blessed to have such a wonderful psychiatrist.

My return to work: The days leading up to my first day back to work on 04 January was met with much trepidation. I was full of fear and anxiety as much as I tried to stay in the moment. As part of my medical disability status, R sent a letter to the group managing my FMLA program indicating that I should only work four-hour days the first week and six-hour days the second week. My manager was very supportive about that suggestion. I also asked my manager if I could adjust my schedule to work 0700-1530 opposed to 0800-1630 which he agreed to. This serves a two-fold purpose. First, it frees up the afternoon to make available opportunities to have my continued appointments without missing work. Second, I am finished working while the sun is still shining—something that is important to me. I used to hate waking up in the dark and finishing my day in the dark, especially during the Standard Time Zone in winter.

The first two weeks my manager wanted me to concentrate on taking some mandatory computer-based training that was indicated during my absence. Then he wanted me to cull through the 1000+ emails that had collected during the three months I had been away. Just as an aside, no one from work ever knew why I had been on medical leave. Nevertheless, I had to explain to my manager that one of the side effects of my “treatments” was a vitamin B1 deficiency which resulted in a transient short-term memory loss. He seemed to take that OK. But that factor gives me a lot of anxiety as I don’t remember how to do a lot of my job. I was only in this new job for two-and-a-half months before being gone for three. So, I am still on my learning curve. My team may not appreciate the fact that I still have to ask questions, especially on some things of which I had already displayed knowledge.

After the first two weeks, then all of my clients were informed that I was back to supporting their accounts. Just when I had cleaned up my email box, as of the 19th they started flooding in again, yet another source of anxiety. I made it clear that I was not capable of working any overtime, so I am always left with emails that I have not read by the end of the day only to snowball into the next day. Too many critical projects are all happening at the same time. Meanwhile, my day-to-day responsibilities go on.

I try to stay in the moment each day and that, along with relaxation techniques such as being mindful and deep breathing, are helping somewhat. I have to admit, my Ativan plays a roll here as well. My goal is to do the best I can for my clients during my eight-hour day, and when that is over, to simply walk away from the laptop and let my business line go to voicemail (I work from home). I am giving myself room to acknowledge that I am going to be slow on the uptake for a while, but I have to believe that, at some point, I will be back up to speed.

Overall, I am now in a much better space than three months ago. I am quite surprised at the insight I have discovered about myself along the way. I know I will never “recover” from my bipolar disorder and will be on my meds for the rest of my life. That is a sobering thought (and an expensive one—the Geodon alone costs about $1200 before my $1200 yearly deductible is met). It hurt to pay that much a week ago for my refill, but how many people can say that they have met their deductible during the second week of January! At least now, my coverage for everything is at 90%.

I know this was a long entry, but I had so much to review. It is my intention to do a week in review each Saturday since I am back to work full-time. I have to admit, after being on the computer all day at work, sometimes the last thing I want to do is to get back onto my own computer after work.©2009

My First Day Back to Work

I woke up yesterday morning about 15 minutes before my alarm had been set. I got six-and-a-half hours of sleep and felt well rested. I woke up earlier than I had to in order to enjoy some time drinking my hot tea and settling my anxiety about this eventful day. I had no idea of what to expect.

I spent my last day on full time disability (Monday) talking to my manager. He assured me that everything would be fine. The disability claims group approved me to go back to work from the 5th to the 11th at fours hours a day and from the 12th through the 18th I’d be working 6 hours a day. I explained to him the downside of my vitamin B1/Thiamine deficiency with regard to my short-term memory loss and he understood that it was going to take some time for my brain to heal.

This first week back all he wanted me to do was to go through my email inbox and blow away the majority of the unread emails as my back-up team members were taking up the work covering my clients while I have been away. For these two weeks, my out-of-office email auto reply and my outgoing voicemail message still shows me being out of the office. My manager does not want me to interact with my clients for these first two weeks. He felt that I needed a gradual immersion back into the fold. I am so grateful to have such a wonderful manager. After talking with him, my anxiety levels were reduced.

Well, the moment I had been dreading was finally upon me—opening up my email account. There were 1000+ unread emails just waiting there for me. I took a deep breath (and an Ativan, I will admit) and sorted by sender. It turns out that there were so many I could just delete. When all was said and done, I ended up keeping 73 emails that I felt I had to read which I did. Many came with important attachments about my specific accounts that I would have the need to use later. I saved and filed all of those in the appropriate folders; the next thing I knew, it was 1100.

Oh yeah, my boss did agree to letting me change my work hours and now I will be working 0700-1500—no more overtime hours allowed. I am so grateful for those two situations. I wake up so early anyway; to have to wait until 0800 would be counter-productive. In addition, the upside is getting off at 1500 while there is still sunlight. This gives me the chance to accommodate any doctors and therapists appointments. I never did like working the normal eight hours where the sun was just coming up when I started work and already set by the time I was finished. I hate Standard Time and the sun setting so early in the Winter.

My day actually went quite smoothly. I was very methodical in how I approached the day; I received excellent support from my boss; what more could I have asked. Since my day started at 0700 I was done at 1100. I had the rest of the day free and I realised that I needed a distraction so I would not dwell on what may or may not occur my second day back. A friend of mine had been sick over the weekend and I called her up telling her I was going grocery shopping and asked her what I could pick up for her.

When I arrived at her house, my heart just went out to her. She looked liked she felt so miserable. We settled in and spent about two-and-a-half hours just talking. It was exactly what I needed to divorce myself from anticipating the worst for the next day.

Overall, it was a good day. I am not going to fret about the upcoming days or pile more on my shoulders (emotionally) by projecting outward on the worst-case scenario. I have hope that my job will be far more manageable now than it ever was before. Staying in the moment—what a marvellous tool!.©2009

Appt with Psychiatrist #7

Following on the heels of my appt earlier with my GP, I gave my psychiatrist the results of the blood work and he was clearly pleased that my Thiamine (B1) levels were undetectable. Pleased because there was a solution. He did express concern that I had to begin treatment right away so I would not suffer any more brain damage if some of my cells had already started to die, a result of how long the B1 had been so low. Since it was not measured until November 12 and I had already begun showing the signs of ataxia well before that, (I had never sought any medical advice because I just thought I was getting clumsy), he said there might be some slight damage. However, if I don’t begin the B1 treatments immediately, there will be continued damage to my brain cells resulting in continued ataxia, possible permanent short-term memory loss and possible ocular involvement (I am already showing signs of saccadic movement in my eyes when I am reading—worst case scenario is to develop Wernicke-Korsakoff syndrome—some symptoms I am already showing). I told him that I gave all the information to my GP’s nurse so they can call in the prescription to my medical insurance prescription service (no local pharmacies carry it). That means at least ten days without treatment. If they choose not to call in the prescription, but write one for me to send in, that’s an additional five to seven days. Since today is Thanksgiving day, I probably will not hear back from my GP’s nurse until tomorrow or Monday, still more additional days until treatment can begin.©2009

Appt With My GP #2

Well, the results of the rest of the blood work has come in and what my psychiatrist and GP thought has been proven true. My Thiamine (B1) level was so low it was undetected—clearly the cause for my ataxia, which has grown worse since first diagnosed—my balance has worsened. My GP is looking for an injectable form where I can give myself the IM shots as I do with my B12. None of the local pharmacies carries it, but I did find out that my medical insurance prescription service could supply me with a 90-day supply that is not outrageous in price. I called my GP’s nurse back, gave her all the information with which to call in the prescription, and asked her to call me back with a confirmation that the order had been called in. I left the message around 1400, but I have yet to hear back from her. I don’t know how often I will need to give myself the B1 shots (I do the B12 once a month), so I will need those instructions as well.©2009

Appt with Psychiatrist Week 5

On Tuesday, after posting this entry I called my group therapist out of politeness (yet another quirk—I can be completely suicidal and yet stop to be polite…go figure!) to let her know I would not be attending yesterday’s session. This was after canceling my psychiatrist’s appt for today and my appt with my GP tomorrow. In that state of mind, I did not want to be around anyone who was going to parse my emotions. When she asked me why I wouldn’t be attending, I simply replied that I couldn’t deal with being around anyone. Then I sorta lost it on the phone despite my keen attempts to be stable. I ended up telling her what had been going through my mind on Monday night when I was quite suicidal and how reading a comment yesterday morning on this post before calling her upset me so greatly. She asked if I could read to her the comment and then my response to that comment. She tried to remind me that this comment only represented one person’s opinion—an opinion that she was allowed to have, but one I did not have to agree with, nor let it have power over me. We talked on the phone for about an hour (unheard of with most in this community). I also told her that I had canceled the other two appts as well. She asked me if I was still feeling suicidal and I had to tell her that I did not know. Then she asked me if I could make a commitment to her to remain safe. If I didn’t tell her what she wanted to hear, I knew she would call 911 because she said as much. Not wanting to go there, I told her what she wanted to hear. Then she asked me if I would be able to call her before she left the office later that afternoon and I said I would.

When I get in this state, I always sabotage myself. That’s why I canceled the other two appts. I simply no longer cared about wanting to get better. However, after talking with her, I rescheduled both appts.

Well, the rescheduled appt with my psychiatrist gave me a valid reason for missing Wednesday’s group that I wanted to do in the first place. When I went in to see him yesterday morning, I could not make eye contact with him. His primary concern is that the meds cocktail he has me on is not working to get me out of this severe depression. He decided to finally add an antidepressant to the mix and gave me a sample of Lexapro. Not wanting to trigger a manic phase, he only wants me to take 5mg once a day. I also told him of my financial problems since I incurred all these medical bills. I also found out Monday afternoon that my 16-year-old Honda with 250,000+ miles on it was not long for this world (power train and transmission—the same quote I got from three different auto shops). I simply cannot afford to buy another car, and the cost to repair my car was going to be four to five times the blue book value of the car, an amount I couldn’t afford anyway. He told me not to worry about the cost of the Lexapro, as he would keep me in samples for the time that I felt I needed it. That doesn’t even touch the $175 I just had to shell out on my other bipolar 90-day scripts.

I also convinced him that my balance was much better and that I thought he and Wallace had just been alarmists. I said that because I don’t them to make such a big deal of my continued imbalance. I received some of the results from that blood work that Dr Wallace had ordered.  The Magnesium, Phosphorus and Zinc were all within normal limits (albeit on the low side). Now we are just waiting on the Selenium and the most important one of all, the B1 which, in part, may be causing my ataxia (we already know that my B12 is on the low side of normal, so I’m back to giving myself the shots again once I mail off Dr Wallace’s scripts—and I don’t even know if I have the money for all of those). I am sure my B1 should come back too low to account for the ataxia; I just don’t want to think that it may be because of an organic process in my cerebellum. If my B1 is too low, I wonder if they make an IM version I can use to shoot myself in my thigh, or if it only comes in IV form (we already know that I can’t absorb it orally because of my bypass surgery). Dr Wallace also wants me to schedule a time when I can get the Infed, the iron infusion by IV, but when I did that before, it was approximately $1600 a pop. The doc said I might be able to participate in a clinical trial currently being offered so I could receive the Infed for free, but I’ve yet to hear a reply on that one. If I can’t qualify, I won’t be able to raise my Ferritin levels, already abnormally low, even though my hemoglobin is only just slightly lower that normal in comparison.

So here I sit Thursday morning with nothing to do. I don’t know what I am going to do with my car. At some point very soon, it will die on me. I just hope I’m not on some interstate when it does. When it does crap out on me I will truly be up a creek.©2009

Appt With My GP

Ahh, Friday the 13th—ya gotta love it!

OK, yesterday I went to see my GP as a follow-up to all that fasting blood work. My psychiatrist actually called him at lunch before my 1615 appt to discuss his concerns about my apparent declining health. My psychiatrist told him that I flunked the Romberg test, so my GP performed some additional neurological tests on me. He confirmed that I have Ataxia, a neurological sign and symptom consisting of gross lack of coordination of muscle movements. There are many culprits, so I am choosing to ignore the more dreaded causes. There does appear to be an association with B-12 and B-1 (Thiamine) deficiencies, however.

On my lab results, my B-12 was within normal limits; however, not suspecting anything along these lines three weeks ago when my GP ordered the fasting blood work, he did not test for B-1. He decided to order more lab tests: Magnesium (serum), Phosphorous (serum), Basic Metabolic Profile (a repeat from the last one), Zinc, B-1, and Selenium. They are suspecting that the Ataxia may stem from a vitamin/mineral deficiency. The only problem is that my body does not absorb vitamins and minerals properly (I had gastric bypass surgery in 2003 which bypassed the ileum and a good portion of my jejunum, the two sections of the small intestine into which the stomach dumps). Most vitamins and minerals are absorbed in the jejunum, which may explain why I may have a serious deficiency. I can’t take vitamin pills; I’ve tried with no success with iron when I was severely anemic before resulting in an IV infusion of iron. Couple this with the fact that I am not eating anything (I lost 17 pounds since 21 October), thereby not gaining any nutrients from food; this can make for a nasty combination. It took three years for my ferritin (a protein that stores iron and releases it in a controlled fashion) levels to tumble down to 2 (normal is 20-200ng/mL for females) (and now it is down to 5), so maybe it has just taken longer for these vitamins and minerals to reach abnormally low levels. Sure beats the hell out of the idea that I may have some morphological problem in my cerebellum, a region of the brain that plays an important role in the integration of sensory perception, coordination and motor control. [gosh, I bet you didn’t think you’d be getting anatomy and physiology lessons on this blog :)].

I didn’t leave the GP’s office until 1800. He spent two hours with me. Now we wait for the results and these are specialized tests, which may take a couple of weeks on one or two, especially the Selenium (I hope that doesn’t translate into big $$$—I’ve enough medical bills as it is). These are so rarely ordered that the lab manager had to get out two huge reference books to look up what color top the test tubes had to have in order to collect the blood in the right test tube. And here she though she was wrapping it up for the evening when I was walked back to the lab! (I never seem to do anything half-assed). Meanwhile, I bought a cane this afternoon so I can walk without falling over. Yeah, that does a lot for my butch image…lol.©2009