Here's the weekly update collected from various emails and other writings...
It's been a very busy week... I am working five days straight doing child care (Wednesday-Sunday), and I set my mind not to skip church on Sunday. (I didn't skip! Woo hoo!) That means today is going to be one long day. This means that I'm really having to make a point to have my "me time" and not waste it. That's not very easy, but I'm getting a lot of practice using my time more mindfully throughout the day instead of zoning out a fair bit of the time and using mindfulness some of the time.
Tuesday afternoon I had a meeting with one of the associate pastors from my church. I'm trying to work with him on an effort to start a disability ministry, and I'm in the process of writing a proposal to submit to the church council. It's taking a lot of concentration, and I'm trying hard not to leave it half-finished. It's hard to stick with it when I can't work on it while C is here, and it's hard to put time into it when I have to balance it with down time.
On July 22, I had an exam under anesthesia to determine whether my right retina was attached. It is, including the macula. A small area which was previously attached is not, and the doctor will be monitoring it in case of further progression. He does not believe it poses a significant risk and reattaching it would not be worthwhile since it is very thin.
I got a flashlight from Dad and have been doing tests on my eyes. Dr. Trese said he had noticed "increased pigmentation" in the area of the macula, which is the area of the eye that sees colors and small objects. The other areas all around it see motion and no colors, and a person cannot read with these areas. I asked on the ROP email group whether this pigmentation could affect a person's vision, and the answer that I got is that nobody knows. Some people have a little bit of pigmentation and very poor vision and some people have a lot and their vision is fine. What seems to be the case is that there is only a very small area left that I can see out of and a lot of times things just are not hitting that area, so sometimes I see clear but most of the time I see fuzz. My field used to be pretty big when I was a little girl, and even up until the time when I went to SFA. I can remember the way the light on my scanner looks and seeing the color of the carpet where I lived in 1995, which tells me that I had stability until at least 1995. The flashlight now looks like a little tiny dot, not a nice strong beam. That is assuming it makes it into the non-fuzz.
The flashlight test on my left eye is very interesting, and I have a hunch that whenever they get around to working on it it may end up being the better eye. It's not just that it's more responsive. The area that gets light is larger--the flashlight actually looks like a beam, even with the damage. I understand why it always tested as a nonfunctional eye in the doctor's office when I was little. Compared to what I could see with my right eye, it is nonfunctional because the vision I had in my right eye back then was a lot more functional than anyone probably was able to explain to my parents at the time. If my left eye has always been white because of cornea damage, probably no one had ever seen that I had any attachment worth saving until I convinced someone to do an ultrasound--they weren't possible when I was a baby. So it seems God's been preserving it all this time for when I needed it most--normally my brain would have ignored that eye completely. Anyway, the way that my left eye sees right now is comparable to the way my right eye was seeing before my first transplant. That's a hopeful sign, and I think I need to be sure to discuss that with Dr. A. when the time comes. (I really hope it's soon.) I feel like this is an important point in my life and God is about to do something that I've been waiting on for a long time, but I have to answer some very important questions in myself first about my beliefs and my attitudes. These are things I addressed somewhat in my July 22 entry. Can God use people with disabilities just the way they are, and can a nondisabled person advocate effectively on behalf of people with disabilities and minister effectively to and alongside them?
I went to the doctor on July 28 to follow up about my Topamax. I've had some problems with rising pressure in my eyes which could have been the Topamax and could have been my other eye meds. I was put on meds for the pressure, and it's lowered nicely now. But the Topamax also increased my nystagmus (jerky eye movements), which was already a problem. It was so bad that I could really not see anything at all--by the time I saw something, my eyes had already jumped away from it. So we lowered the Topamax to 75 mg/day instead of 100 mg. I wasn't happy about it because the 100 mg was doing a great job with both my psychiatric and neurological symptoms. My mood is a little less stable, and I don't like that. I do think I can tolerate it--I was doing ok without meds, but life sure is a lot easier with them. He put me on Atarax at night for anxiety and allergies, and we'll see if that helps me stay off Xanax. I'm not having a problem with Xanax abuse, but I really don't like having it around and I don't think he likes prescribing it. I know I can tolerate Atarax well, and I do need something for the allergies. So we'll see if controlling the anxiety helps a bit with the mood stability issue where I can't get the Topamax high enough. I've been at 75 mg for a couple of days and the nystagmus is markedly improved. My vision is also much, much better. I have been able to locate some objects and navigate around in the house, which is a substantial improvement. If I can maintain an acceptable level of control of symptoms at this dosage, I'll stay with it. I hope not to have to lower it any more. So far I'm very pleased.
I've discussed the Topamax issue on several email lists, and a number of people have expressed alarm at the fact that my doctor would prescribe a medication for me that has a known risk of serious ocular side effects. I can certainly understand the alarm--some doctors do dismiss risks, and in the case that mine had done this it would be worth addressing the issue and trying another medication. However, my condition has been treatment-resistent for a long time, and the only thing it responds to well is antiepileptics. Unfortunately, I experienced significant weight gain and metabolic side effects on other antiepileptics. After doing research on the other medications that are possible treatments for me, I am able to determine that my doctor has good reason to believe that Topamax is most likely to control the symptoms successfully with the least amount of side effects. Knowing the mechanism of the ocular side effects (angle closure glaucoma caused by dislocation of the lens), we discussed it and determined that since I don't have a lens in the functional eye, the potential benefits are worth the risk, and I did not begin taking the medication until receiving approval from the eye doctors. I was instructed to go to the doctor if I experienced vision loss or pain, which I did.
Because I have multiple eye problems, I am also on other eye medications which can raise the intraocular pressure. There is no way to determine with certainty that Topamax was even responsible for the rise in my IOP. It happened to occur at the end of my first week on 100 mg, but I also responded well to glaucoma meds and I had a history of difficult-to-control glaucoma before Topamax anyway. So all of this could have been very coincidental. Why am I going on about this? I guess because just as there are doctors who don't pay attention to FDA warnings, there are also situations where a medication is the last resort or the best med for the symptoms despite the horrible side effects, and the best course of action is to do whatever can be done to make the most of a less-than-ideal situation and try to balance the side effects with good symptom control. It's important to me that people understand this when reading about my life with multiple disabilities/health issues. Things are very hard to balance out because one med affects the other health condition and vise versa. That's one of the things that is so frustrating for me: knowing that ideally things should be a lot easier but they just aren't.
Another example of this: I have discovered that if I eat a big meal at night with my Atarax, I'm not a zombie the next day. This is good. I get the benefits without the side effects. What's the catch? I don't get to lose weight. Can I get this effect if that big meal is a bunch of veggies? I'm not sure. I'll have to try it out after I've been to the grocery store. But this presents me with another dilemma: whether to be an overweight person with energy or a thin zombie. I think I'd rather be overweight with energy. I'll be criticized for it; but I'll be criticized for being a zombie, too, and probably assumed to be less capable. So in the long run, being overweight is probably the better of the two choices.
I have a job interview on Monday. I'm trying not to let my hopes get so high that I get hurt too much if it doesn't work out, but it sure would be cool if it did! It's 25 hours a week at the crisis pregnancy center, requires a social services Bachelor's or advanced degree with volunteer or ministry experience. The center is only three blocks away, so I could walk to work! It would require doing some significant paperwork but also training the volunteers and most of the counseling of the clients, which I would love. In Anderson a dream job like that would be very hard for me to find!
I think I could really enjoy working at the center. Despite my negative emotions about my own inability to have a child and the feelings of jealousy I sometimes face toward younger moms, I also want to do something to help them make wise decisions and provide well for their children. That's a lot of what drives me to do the work I've done with parents of children with disabilities, many of whom are young mothers or moms of preemies whose children were born prematurely after infertility treatments. I don't have negative feelings toward them personally because of my own plight, and I recognize that my choice to adopt rather than conceive is my choice. I wouldn't deny anyone the right to infertility treatment. My main concern is that people who choose infertility treatment exercise wisdom following the conception and not take that baby lightly. Having a child is not a right. Parenting is a responsibility, and it begins with conception and carrying the child. Many people know this, but I know a fair number who don't--they think of pregnancy solely as a medical condition and think they should be able to do anything during pregnancy that they would do otherwise. without regard for the fact that there is another living being who is affected by their actions.
I think it's interesting that one of the requirements for working at the center is a commitment to sexual purity. Ironically, some of the people I know who are most committed to sexual purity would be most judgmental toward girls who come to the pregnancy center. They would have a difficult time talking compassionately with them--there was a time when I would have been one of them. I would have judged them harshly because they had been irresponsible with their sexual activities. I wouldn't have wanted them to be blessed. Watching C has helped me to have more compassion for single moms and to realize how difficult life can be and how important those blessings are for girls who have them, even when they are taken for granted. Most young single moms don't have the benefit of seven or eight adult family members who are available and willing to babysit and chip in for child care expenses while Mom finishes school or works a $6/hour job with unpredictable scheduling. At $6/hour, it's hard to pay rent, car, food, utilities, and child care, let alone do any of the fun things normally associated with "happy child life"--the things Americans consider rights for any child. I bought a book called Working But Poor but haven't read it yet. It's next on the reading list... I'm sure I won't be surprised. It doesn't surprise me that single moms stay on welfare... If they work these little jobs, even full-time, they won't make much more than they get on welfare--and they'll lose the other benefits and have the added difficulty of finding good-quality child care on top of it. I can't be judgmental of them anymore for taking what blessings they have the opportunity to take.