Difficult Choices, Judgements, etc.

I have had migraines since I was 7 years old, but it has just been in the past 10-15 years that they have been severe enough or frequent enough to affect my life or work abilities. I have not been able to work since March of this year, and have spent the past 8 months doing more tests, trying new meds, etc., trying to find that "magic combination" that will free me from the pain so I can have a "normal" life.
We (my doctor and I) have found one medicine that is helping, but I just recently figured out that the side effects are worse than the migraines it is preventing. I had been having increasing episodes of forgetfulness, blackouts, and just a general feeling of being disconected from my body. One person described me as a zombie. I had mentioned this to my doctor, and asked if it could be the medication I was on, and he said "It might be, but I doubt it. Let's reduce the dose and see what happens." So I reduced the dose, and the problem didn't go away.
I started to get worried because I had had similar symptoms before when my potassium levels dipped down too low. I decided to start taking some potassium supplements to see if they would help. They didn't.
Then I went to see my doctor again, and his "partner" saw me instead. Because he had never seen me, and hadn't been aware of all the conversations we had had, he questioned why we hadn't increased the dosage to try decreasing my headaches even more. I explained the symptoms I was having, and how we had tried decreasing the dosage with no success, and he said, "Well, then it must not be that medication, let's increase the dosage and see if we can get rid of these headaches for you." He also prescribed another medication that he had "seen good results with". So I went from 25mg in the morning and 25mg at night, to 25mg and 75mg, and started a new med.
Within days, I went from not being able to sleep past 4, to not being able to sleep past 2:30. My forgetfulness and occasional blackouts became a 24 hr condition; I couldn't remember the names of common household items, I didn't dare drive, I would forget to eat (or feed my kids) until one of the kids would say they were hungry, then couldn't remember how to make the simplest things like cold cereal. I could/would focus very hard, and "break through the fog" when I really needed to, like when trying to remember how to cook something, but it was literally like having to take a dozen "blankets" off my brain each time I wanted to focus on something, and as soon as I finished a task, and let my mind relax at all, the fog would roll back in. I was exhausted from the effort, frustrated by the inability to do the simplest things, scared that something was seriously wrong, etc., but I was partly reassured by the fact that my doctor knew how I was feeling and he wasn't concerned. I also "knew" it wasn't the medication, cuz he said it wasn't. (right?) After 2 weeks of feeling like I was brain dead, and that my body just hadn't stopped moving yet, I mentioned my frustration to my counselor. She suggested I talk to the pharmacist.
I approached the pharmacist, and as I fumbled with my words, telling him what medication I was taking, he finished my sentence, "And you want to know if the medication is the reason you feel like a zombie, right?" I nodded and started crying. (Finally! someone who understands) He explained that the medication I am on was causing my symptoms WITHOUT A DOUBT and that the higher the dose and the longer I take it, the worse off I will get.
I asked him how anyone would choose to feel this way, and he told me that most people with migraines feel like they don't have a choice. They can have EXTREME pain that prevents them from holding a job, driving a car, & basically functioning on a day to day basis, or they can take this medication that prevents them from holding a job, driving a car, or basically functioning on a day to day basis, but without pain. He told me I am the only one who can decide what kind of "box" I want to be in. I can keep taking the meds and be pain free, but nearly helpless, or I can risk having the migraines come back. I asked if there was anything else that doesn't do that to you, and he said, "Not as effective as the one you are on."
I took a couple of days to think and pray about it, and made an appointment with my doctor to wean myself off the meds. When I told him how I felt, he dropped another bomb. The medicine I had been taking was actually an anti-seizure medication, and the reason I was feeling that way was because the medication "can cause mini seizures in some people".
I have worked my way down to just 25mg at night, and have not had any migraines for almost 3 weeks. I still have occasional forgetfulness and feel a little jittery in the evenings, and I still can't sleep past 2:30 most mornings, but I can function again. I am not so naive that I think I am cured, but if I can even keep the migraines down to one or two a week, that will be an improvement over the way my life was in March. I am just taking one day at a time, and being thankful for each day without a headache or a seizure.
This whole experience has opened my eyes to something else though. While I was walking around in this "fog", I attended a family event and overheard some family gossiping about an aunt of mine. Some comments made were, "She just sits, staring into space", "If she isn't in a daze, she is in pain", "I don't know why she even bothers to come if she isn't going to participate", etc.
I have an aunt that as far back as I can remember, she has been "sick". Every family function she has attended, she just looks miserable, and her family usually comes late and leaves early. In my mid-twenties, I found out she suffers from migraines, but at that point in my life, my migraines were still in the mid-range and far-between, so I had no idea what kind of pain she was going through then. When her husband described "suicidal" migraines, I thought maybe she was just a little more sensitive to pain than I was. Now I know what those feel like, and as I listened to her extended family talking about her, I realized she probably was taking the same medication (or a similar one) as I was. It explained her behaviour at all the family things. The zombie-type behaviour, the inability to communicate in coherent sentences, or the outright avoidance of any contact. All the time I was growing up, I just thought she was strange. Now I have seen through her eyes, and realize how unfairly I have judged.

A little girl, A woman's idea, A couple dollars, A purse

My cousin posted a blog about a little girl with cancer named Taylie http://www.tayliebug.com/Index.html and another one about a woman who wanted to help her http://adashofseason.blogspot.com/ that I wanted to share with everyone. If you add this to your blog or Facebook wall, then let the woman know, her friend will donate $2 to Taylie's family, and you get a chance for a purse.

Divorce is like...

One of my close friends just got divorced from one of my relatives, and it has been a very good thing for her. I am very happy for her, and hope that it stays a good thing for her, but from my past experience, and the experience of many of my friends and family, it isn't always a completely happy event. There is/could be a mourning period much like one feels with a death.
I have come up with some analogies (with the input of people over the years) that are perhaps a little vulgar and harsh, but many of them comes pretty close. (Most of these come from people who have gotten divorced after an abusive marriage)
Divorce is like giving birth to a stillborn child. You spend months (years) nurturing another person, sacrificing your own happiness at times, for the sake of that other life, giving up things you used to be able to do because you have to consider how it will affect "it". There are moments of pain and discomfort, but you don't complain, because you love "it", and you are willing to put up with the pain for the sake of "it". As the time passes, the pain gets more intense, and more frequent, but still, you hold on, because "it will all be worth it". "It" may kick, stretch, even be toxic to you, causing you to be bedridden or hospitalized, but you love "it" and you are determined to "carry it" as long as possible. Then one day, you find out this "child" you have nurtured, carried, loved and nearly died for is gone. Not only do you not have "it" (marriage/love), but you still have to go through the pain of delivery (mediation), funeral (court), and then all the firsts (first night, week, month, year, family gathering, holiday without "it")
Divorce is like pouring two kinds of liquid into a glass, then deciding you want to seperate them. No matter how you try, there is no way for either of you to ever come away with the exact amount, or even the exact type of liquid you put in. A small part of each other's liquid will go with each of you.
When you get married, you sew your lives together, one stitch at a time. As time goes by, some of those stitches wear out, and get loose, and if you don't repair them, the marriage can fall apart. Sometimes the marriage is so volatile that the two people are ripped apart, leaving bleeding holes where the thread used to hold them together. If a marriage has to end, the most healthy way to do it, is to gently pull the threads out, with the help of a professional. There will still be scars, but you will heal a lot faster.

Jasen Foster

Jasen Foster was one of those kind of guys who seemed to have everything. He was good looking, he was a good athlete, and despite being confident, he was nice. He was just an all around, typical high school boy.

Then one day at football practice, fate stepped in, and Jason was paralyzed on the right side. With extensive therapy, he regained partial use of his right arm and hand, but has been in a wheelchair ever since.

I was one of the lucky people who was asked to help Jason from class to class when he came back to school that first year because we had some common classes. I got to know him pretty well, and learned very fast that he was still the wise-cracking intelligent (slightly) prideful person he was before the accident. The only difference was that a lot of people could only see the wheelchair and curled up right hand, so they assumed his brain was mangled too. Oh if they only knew the conversations we had!!

I think Jason was one of the reasons I chose the type of work I do. Before his accident, I never knew how to approach someone with a disability. I was always afraid of saying or doing the wrong thing. But with Jason, I realized he was a person before, he was still a person after. It shouldn't matter whether he was in a chair, whether it was a little bit harder for me to understand the words he was saying, or whether his right hand could grasp mine when he held my hand. He was still Jason. If someone had a problem dealing with him, I saw that as THEIR problem, not his. I feel that way every time I meet a new client. Each one has a different personality, but each one is just like Jason. They are "someone" inside of their disability.

I didn't realize while we were in school, but Jason and I have a family connection. His mother and my great-uncle are siblings. Just this past weekend, my GREAT aunt and uncle were celebrating their 60th anniversary, and I got to see Jason again after about 10 years. He is still going strong, and hasn't changed a bit (except some gray hairs). Just like every other time I see him, I gave him a hug, told him I love him, and left him feeling like one of the luckiest people in the world for having him in my life.

A Busy Life is a Happy Life

Ever since I stopped working, I have been thankful for the days off when I have one of my "bad" headaches (the level 8-12 ones), but when I have the lower level headaches, I get pretty bored and frustrated.

One blessing has been my niece Alicen. My sister brings her to visit when she has to work, so I at least have someone to take care of during the day. Of course I still have my slightly disabled 19 year old son, too, but he mostly just needs supervision, not "babysitting". I really look forward to the days she comes, and dread the days my sister has off.

Weekends used to be my only days off, and I would look forward to them as a time I could recuperate and rest from the hard work of the week, but now I look forward to them for a very different reason. It is the only time everyone else is off work, and we can spend time together. This past weekend was packed especially full.

My sister worked Saturday morning, and came to my house for lunch, then we went to Spud Days in Shelley for about an hour. They had 3 different bathrooms set up, but the lines were so long at each of them, that we waited for 1/2 hour just to get in one. We spent the other 1/2 hour looking around at the booths.

Then we headed for Pocatello for Fayne (Reid) and Maxcine Jardine's 60th wedding anniversary. I got to see one of my favorite people there: Jason Foster (see post about him). Most of the Jardines were there, Uncle Dennis & Aunt Jerrilee, Garon & Norma, Earl and Gaye, and us were the only "Browers" there. Just as we were leaving, Aunt LaRee showed up.

We got back to Idaho Falls just in time for our ward party. It was held at Sealander Park, and it was really fun. They had a lot of things planned, but most of us just enjoyed sitting around talking and visiting.

There was one game that was a big hit, though. A two-person team would be blindfolded, and given pudding cups to feed each other. They were supposed to give each other instructions to their mouths, but of course it never turned out that way. My daughter ended up painting a "bib" on her partner.

I had a "level 8" headache most of the day, and didn't have as much fun as I could have had, but I definitely preferred the busy-ness of it over the idleness of some of the days I have had since I stopped working.

Just a "little" smudge on the clean slate....

Okay, so it has only been about 2 weeks since I said I was going to try to make the next 40 years more upbeat, and the last couple of days have been a little bit of the "old stuff". Not as bad as usual, but I have had 3 days and 2 nights of LEVEL 10-12 headaches, and I fell into the old "poor me" "why me" "God must be punishing me for something" thinking that tends to put me into a downward spiral toward a deep depression. I have done as much as I could as far as functioning as a mother and a person, but deep inside, I felt like my kids would be so much better with a different mother; someone who could keep a job, or at least if I can't keep a job, be able to go pick my daughter up when she is sick. I was having a level 12 headache, and she was having a stomachache, so I shuffled into her school, trying to block the light and sound with one hand on my right eye and my shoulders hunched against my ears, knowing how ridiculous I looked, but knowing how much it would hurt if I didn't do it. Even then, the noise level in the school brought tears to my eyes, so I was standing in the hall, signing her out, with one hand over my eye, one hand signing her out, tears pouring down my face, and waiting for her to come from her classroom, and thinking "my poor daughter deserves a mom who can pick her up from school without embarrassing her" I have had a lot of days like this in my life, but I was really trying not to have any in my "2nd half of life". It just was too much after 2 days and nights of that level of pain.

I thought a lot of my friend Suzanne during the painful nights when I couldn't sleep, and how she was in so much pain with her cancer, and how she still managed to stay positive about life, and I would talk to her, asking her why she was so much stronger than me or why I couldn't seem to "get over" my pity party, but didn't get any answers.

Then last night, when I was still suffering from a level 8-9 headache at bedtime, there was a special about Patrick Swayze, and he was talking about his cancer, and how it was so important to him to work right up until the end, and how he wouldn't even take his pain meds because it would make it hard for him to remember his lines. Again, I thought to myself, "What makes him stronger than me? Why can he be in so much pain and see so much positives about life? How can he choose pain in order to give pleasure to his fans instead of relief to be able to die in peace? What drives a person to keep pushing forward instead of saying (like I do) 'Why me' 'What did I do to deserve this' or something like that?"

I don't want to "Should on myself" (a phrase used by therapists), but I feel like I should be able to "smile through the pain" too, if I would just put my mind to it, but when I have one of these headaches, it is the closest to suicide I think I could ever come. I could never, EVER, take my own life, but it is the only time in my life that I would welcome death. I have even had fantasies about drilling a hole in my head to release the pressure. Or putting my head in a vice to equalize the pressure. All of these things are just fantasies, fleeting thoughts that I could /would never actually do, but as you can see, we aren't talking about a small amount of pain here. I feel like a prisoner to the pain, being tortured by an unseen force with unbelievable pain on a regular basis, and no one can tell me why.

I woke this morning with a mere 5 headache, and I am soooo happy!!! and almost like having a baby, I don't remember exactly what the pain was like, but the emotions behind the pain are fresh enough that I know I don't want to go through it ever again. But also similar to having a baby, just having it behind me is sooo nice that I am thankful for the concept of opposition. If not for yesterday and the 2 days before it, a 5 headache would really be the pits!!!, but in comparison, it is such a blessing.

So, maybe I can just put the word PAIN or HEADACHE in permanent ink on my slate, in tiny little letters up in a corner somewhere, and allow myself to have one pity party a month over it or something. Just one day? Nope. That is what I am doing this for. Put it all down, get it out of my system, start tomorrow with a clean slate. :)

"Mandy"

Mandy is a woman I met in a Battered Women's group. It is anonymous, and they discourage us from talking about what is said in the group outside the group, so I am not going to use her real name or go into her private stuff too much, but I will say that she had a REALLY rough childhood, and has had (is still) having some pretty rough patches in her marriage. She just wants to feel like she has hope for some happiness some day.

She reminds me a lot of my "breast" friend Suzanne Price Averett, and I have formed a strong attachment to her. I look forward to seeing her each week, and hearing about the small steps she is taking to fix her situation. She is NOT Suzanne, I know that, but sometimes I think I see someone inside Mandy who is a lot like Suzanne. She is strong and funny and positive and fun to be around. The problem is that very early on, that person was buried by Mandy's family and husband, and she only peeks out every once in a while in group. She is too afraid to come out anywhere else.

This past week, we were doing a questionnaire, and one of the questions was "One thing you might never guess about me is..." and she answered "I think about suicide a lot"

I immediately burst into tears. I couldn't help myself. After all I went through, losing Suz, I just couldn't imagine losing Mandy too. Especially if she killed herself. I know it was selfish on my part, but I told her how much I would miss her and asked her to think about that if she ever reached the point where she was going to go through with it. I begged her to remember that she will never be totally alone. No matter how bad things get with her family or her husband or work or school or whatever, I WILL CARE IF SHE DIES. I was saying all of this with tears pouring down my cheeks, because I felt like it might be the last time I was going to see her at that point. Later, I realized I was overreacting, and might have scared her, but I knew she was someone I didn't want to just casually talk to each week, then forget about until the next session, and I wanted her to know that. I wanted her to know she was important to me.