Saturday, February 23, 2013

pills, Pills, PILLS & bills, Bills, BILLS

I’ve been a bit occupied the last few weeks. Can you guess what with? =) It might be difficult to understand why I’m so frantic about Nami’s medicine given that despite taking them he’s still having about 300 complex-partial seizures a day. Seems likely they aren’t working, right? All it took was one day of forgetting to give him his morning dose to realize how dependent he is on his medicine. After the missed dose Nami turned purple, was freezing cold, and didn’t move from his position on the couch all day. He was basically in a constant seizure. Unfortunately, I didn’t realize that the morning dose had been missed until giving him his evening medicine.

I have nightmare after nightmare about counting out the pills for the week. Viliami is currently on 5 anti-epileptic meds that he takes twice a day and I am also taking medication for different health issues. In my nightmares someone or something knocks the pills out of my hands and spills them all over the floor. I go into hysteria, screaming at whomever/whatever caused the problem as I frantically try to pick them all up and get them into the right container before my sons come and ingest them. I figure these nightmares are a reflection of our current life situation.

Where there are pills, there are bills. I need to be able to face the reality that bills will never stop and I will never be caught up. That’s just part of the facts of life. Our poor mail deliverer must hate us. I drive by our mailbox each day, sometimes multiple times a day. I often think about stopping but most of the time I choose to just drive on by because I'm afraid to find out what’s in there. By the time I bite the bullet and go pick up the mail, it is so jammed in there that there are many rips in the paper. I begrudgingly pull and yank at it until I get it all out. I usually drop a bunch of it so I have to run after the items and pick them up and then I place it in the front passenger seat. Sometimes it takes a couple more days before I build up the courage to bring the mail inside the house. Unfortunately I sometimes stuff it in a corner on our counter for even a couple more days. By the time I get to it, it usually takes at least an hour to go through and sort all the mail and recycle all the junk. Then I’m so tired that I can't bare to face all the new-found problems that the mail revealed so I put it away for a little longer. All the while, more mail is piling up in the mailbox.

While going through my bills a few weeks ago, I noticed a weird charge from a pharmacy on my credit card statement. I didn’t recognize the name of the pharmacy and the charge of $16.66 was a weird number. I saw it and didn’t feel like I could deal with it right then, so I waited a week before looking into it further. I finally called and found out it was charged through my old insurance company's mail-in pharmacy. I explained, "Our insurance was canceled 5 months ago. You don't have any right to charge our card." The pharmacy explained that they had our card on file from the year before and so when the bill came through, they just paid it with the card on file. I questioned HOW a bill came through to them if I wasn't even insured by the company that used them. They confusingly explained how the pharmacy that sent the bill to them was their sister pharmacy or something and that I should call them. Of course they didn't take any responsibility for their mistake and told me they could refund my money but that I would be sent to collections for not paying. At this point I knew something was really wrong. Little did I know the nightmare that this one phone call would cause!

I called the pharmacy who had sent the bill and asked them what insurance they had on file. They said the name of our old insurance company. I asked them how they got that information as the only insurance we had ever discussed since starting to deal with them was our current insurance. They responded that when they looked up who to bill our old insurance information popped up as the current insurance so they billed them. I asked them to please change the information to our new insurance company and they said they couldn't do that. WHAT?!?!? That makes no sense! I told them, "When I go to Walmart Pharmacy I give them my insurance card, they run the prescription through and then get me the script. Why can't you? Where is this mysterious machine that is sending you the wrong information and how do we get it to stop?" We talked in circles and nothing they said made any sense whatsoever. They told me to call my old insurance company to make sure it's canceled.

To make a long story short, there was a series of unfortunate events that led to me being told I would need to pay my old insurance company $10,700+ for the 30 day supply of these little babies:
Alrighty...I’ll just go write a check since I have that much money lying around! So because multiple companies did NOT do what I asked them to do, I have to pay? And, in the meantime, the pharmacy that we are forced by the FDA to use for this medicine will not fix the mistake nor will they send our next shipment of meds. Needless to say, I was a panicking mess.

43 phone calls to 5 different companies and 5 days later, I finally got an emergency shipment for a 14 day supply of meds. The next week I made at least 5 more phone calls before I was finally able to get a regular shipment scheduled. The meds arrived and so did a bill for $2700 when I was not supposed to be billed anything. I’m still not sure how it will all get resolved, but I have no more energy to deal with it right now. No wonder I hate my mailbox!

Monday, February 11, 2013


For months now, my most constant feeling has been numb…nothing. It is what I wanted…the point I aimed to arrive at. Caring for Nami is heart-wrenching, painful, too much to bear. Our family has endured one blow after another. It got to the point that I was no longer able to handle any more blows and I wasn’t even surviving in survival-mode. I needed nothing-mode. That sounded nice…a place where I felt nothing. I worked on pushing feeling out of my head and my heart.

In the past few months there have been moments of such extreme anguish that I was unable to block it completely out. I crumbled to pieces when Nami was scheduled, then unscheduled for brain surgery. I scolded myself when I groaned and sobbed with the pain, “How could you let yourself get your hopes up!?! You know better than that! Don’t get your hopes up because when you do they always come crashing down. You know you can’t handle the agony!” Other moments of anguish were the multiple times in the last few months that Nami has been hospitalized due to uncontrollable seizures. When these medical emergencies arose, I felt extreme stress and grief, but then I tried to quickly bury these feelings.

I am unable to handle the pain I feel every time I watch my child seize, so I push it under. Nami seizes so many times a day. I want all of it gone. I just want numbness. I haven’t ever been a drinker of alcohol, but I've crave wine in hopes that it will calm me and make me feel numb. I have gained a new comprehension of why people abuse drugs. I have wanted drugs to mask the pain I feel. I have even wished for a meteor to strike my room so I would no longer have to feel this despair. I have been desperate to get away from it.

[Here is a link to neuropsychologist who talks a little about families of people with TSC. It is a few minutes long but goes into some explanations the hardships on the family and why. How Physicians Can Support the Family ]

After a while, I got quite successful at not feeling. I often went through the motions of my day, not realizing how I got from point A to point B. I got to the point where I talked about Nami’s 100+ seizures day after day after day without feeling. I got to the point that I was no longer able to cry. I consciously knew that what I endured at particular moments should be bringing me to tears, yet I sometimes just sat for hours in front of the television feeling nothing. I wasn’t even aware of what I was watching. I just knew I didn’t feel and that is what I wanted.

What I didn’t realize is that pushing feelings away resulted in numbness from extreme sadness AND happiness. The problem with feeling numb is that you block out any real feeling at all. In the past couple of weeks I have finally been able to feel REAL joy again…the joy I had unintentionally suppressed for months. It has felt wonderful to feel joy again! Unfortunately a greater realization of the anguish I have has come seeping back in and I find myself wanting my brain to block out the pain again. We recently added a 5th anti-epileptic med to Nami’s mixture and now he is having more trouble breathing as he seizes. He’s had a few seizures where I held him as he gargled for breath during a 2 minute seizure. He is still having well over 50 seizures a day. I don’t even know how to count the seizures anymore. I wonder if I should even count the less severe seizures or only the severe ones. If I only counted the scarier ones it would be about 20-40 a day. If I counted ALL the seizures it’s probably well over 100 each day. Nami slept well for 2 days after adding the new medication. Then he began waking up at 4 am again, not to return to sleep. He often only sleeps a few sporadic hours each night. This has sent me desiring that meteor to strike again.

As if enduring a life with epilepsy wasn’t enough, the sad reality is that epilepsy is only ONE facet of Nami’s disease. There is so much more that we have to constantly deal with in TSC. What I have recently realized is that I cannot survive without feeling joy. The problem is that moments of joy are not enough to off-set the moments of pain so I’m not sure how to balance my feelings. I need to constantly reevaluate our circumstances and figure out how to get through each one. This takes a lot of work. I am learning that I need to go through this sometimes excruciating work so that I CAN feel the joy. I am happy about the bits of joy I have been able to feel again. I had forgotten they existed. Thank you family! I have enjoyed being able to feel again, yet this week I somehow often wished the pain I felt was numbed again. I have to figure out how to balance the pain that comes along with allowing myself to feel because I know that I really need to be able to feel the joy. In order to help myself, I have taken time tonight to record some of the things bring me great joy:

  • Believe it or not, I love teaching, especially anthropology (sorry sociology…you’re a great subject but just not holistic enough for my taste. =) I love the journey I’m taken on each day in each class. I love my students who are such good people.
  • I LOVE to hear about my friends and family’s lives. PLEASE don’t stop sharing them with me. Many people have made statements such as, “I shouldn’t be complaining to you. You have so much more to deal with than me.” I don’t want people to feel like they can’t share their lives with me. PLEASE share your lives with me. I NEED it. 
  • This little guy makes me laugh more than anyone else. Today he and Nami were up on the counter, playing in the kitchen sink. When I walked into the room and looked at them he scrambled off the counter, onto a chair, put Salesi’s ear bud in his ear, looked forward (away from me) and acted like he had been there the entire time. Hmm, does he really think he just tricked me?:
  • I am impressed with any and all progress made by this little guy. He has recently started to string two words together more often. It seems like I hear him say a new word almost every day. I love it, even if he doesn’t use it in the correct context or never says it again:
  • I have enjoyed going on two dates with my husband over the last couple of weeks. It is going to be fun to learn to laugh together again as with the help of my family we have scheduled in weekly dates to our lives:
  • I would not be alive today if it weren’t for these guys. I love spending time with any and/or all of them. I cannot even begin to recount the service they have rendered us. I do not have words to express the joy they bring me:

There have been multiple times that I have felt tempted to revert back to numbness since I started allowing myself to feel happiness again. Throughout my life I have often heard the saying, “There is opposition in all things.” This saying doesn’t seem to apply in the way I expected it to for me. I guess I expected that the amount of great pain I feel would be counteracted equally with great happiness. Instead, most of my days are filled with stress and frustration, and I only have momentary glimpses of happiness. I’m still trying to figure out how to negotiate this disparity in my brain. Does this saying mean those glimpses of joy will be so much greater than they would have been had I not felt such extreme pain? I’m not sure. I do hope that one day I will have a greater understanding of life and find myself better fit to handle it. In the meantime I will continue to strive to feel joy and happiness amidst all the difficulty that TSC brings.
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