Baby Steps

I (finally) had my follow up appointment with my neurologist on Tuesday. My husband came with me, mostly because I am still not allowed to drive, but also as support. I like it when he tags along because he is one of my biggest advocates. He is all about helping me communicate with the doctors to try to move forward and find a solution to my problems.

As it turns out, there only three medications out there that can help with the neuro-pathic pain I have on my right side. I have tried all three. Amitriptyline I can no longer take because one of the side effects is seizures. Well, I already have those. Don't think I would like to have any more. Lyrica, the second one, is one I have taken before and complained about endlessly. I took Lyrica about two years ago when I was trying to finish my Bachelor's degree. I didn't like the initial side effects. It made me very loopy for a very long time, until I got used to it. Then it made me gain a lot of weight. My previous doctor took me off of it because he thought it was responsible for my memory problems. It wasn't. There was no change to my short term memory issues after we changed my medications around. Neurontin is the third medication for the pain. It isn't working at all. The Lyrica did it's job. When I think back on things, I remember being much more active than I am now. I was in less pain. Not pain free, but better off than I am now. I think that is a better place to be. So we decided to try the Lyrica again.

I have to go through the loopy stages, which I really hate, but I hope and pray that it will be worth it. One of the added benefits is that it is also an anti-seizure medication. So if all goes well, I may even have a reduction in the amount of seizures I have. It's hard not to get my hopes up about it, but it sure would be nice to be able to take myself to the grocery store, the library, the mall, my friends' houses, anywhere really. I even had hopes of going back to work, but I know that is probably not ever really going to happen. So I'll just keep on keeping on with the writing.

I got the courage up to submit two shorts to a competition recently. Mine weren't chosen, but it was fun writing them. I also participated in the National Novel Writing Month (NaNoWriMo) in November. I didn't make it to the desired 50,000 words in 30 days. In fact, I only wrote 6,337 but it was a lot of fun writing it. And I'm not finished, just distracted. I will complete my novel and continue on to finish my non-fiction piece as well. I am finally feeing good about things.

Laura's Bad, Awful Day

Whenever I have a bad day, or even an unlucky string of them, I often think back to a Sesame Street book I remember reading when I was a child. Grover's Bad, Awful Day is a book about how things in Grover's world went from bad to worse to truly awful in the eyes of a child. I can really relate to that right now. As an adult I no longer get too bent out of shape when I spill my milk or leave my lunch at home. The things that get me down are no longer the problems of little monsters. I have adult size problems now that require more than my Mommy and a little ice cream to help me figure them out.

It has been so hard lately not to get discouraged at the lack of progress I seem to be making. If anything I feel like with every step forward I make, I take two steps back. This week alone I had a debilitating migraine, killer chest pain, nearly unbearable right pain side, and two seizures. I have had to face the facts that even if my heart is in the right place, I can't do everything on my own.

I realized that I am still just so angry. Not in a "Why me?" kind of way, but more in an "I don't understand" kind of way. I don't understand why I can't just hop back on where I left off. I don't understand what I'm supposed to do now. I don't understand how I'm supposed to fix this. I don't understand why my case is so special that no one can figure it out. I can't figure out how best to make myself understood.

The only solution to my problems has been to let go. I don't have the luxury of being too proud to accept help. It's ok to let people in and let them do things for me and for my family. They wouldn't offer if they didn't want to do it. I offer to help all the time because I truly want to be of assistance. Why should I feel so skeptical of others? I need to accept my limitations and move on. No big deal, right? (I say that, but it is still a big deal)

So maybe my bad, awful days aren't as bleak as I imagine. I have family and friends to help me through, if only I will let them. Bad days are good if for nothing else but to make the rest of the days look good by comparison.

Making Plans

October 29 is World Stroke Day. I love telling people my story, but I still struggle with living with the aftermath of my stroke. Sometimes I don't know what's worse. Trying to explain myself to doctors that don't  understand or being forced to explain myself to people that make me feel like I'm just giving excuses. This week has been a tough one on us. I say "us" because recovery is a family affair.

I had two of my seizure-like episodes (un-diagnosed but suspected to be a form of epilepsy) this week. After I have one, it takes me a few days to recover. I feel exhausted and drained for sometimes a week afterward. My seizures consist of periods of time in which I sort of just black out. Most of the time I remain conscious, but every once in a while I lose that time entirely. During these episodes I am unresponsive, dizzy and nauseous. After these episodes I am nauseous, I usually have a headache, I am tired and my right arm and leg hurt even more than usual. Sometimes I get angry and obstinate after these episodes with whomever is directly around me, but not always. I am not supposed to drive for six months after I have an episode. Even though they haven't been able to diagnose them as seizures, I have "periods of non-responsiveness" and am therefore not permitted to drive. I'm a liability.

This weekend I have volunteered my services for the annual Fall Festival at my children's elementary school. I felt so bad telling the PTO (of which I am a member) that I am happy to help out, but I cannot do much of anything. I need to have a job where I am sitting most of the time. I always feel like I am giving excuses when I have to say things like this. We had a hard time finding student volunteers this weekend because our Fall Festival coincided with the local high school's Homecoming Dance. And here I am saying, "Well, I'll help, but not that much." I'm in charge of tickets that day and I agreed to help with clean up. It's just the looks I get when I try to explain why I can't be on my feet all day, why I can't use my right hand, why I can't run multiple booths, why I can't carry anything too heavy... Excuses, excuses, excuses...

Next weekend we plan on taking the kids to the Renaissance Festival. My husband is so concerned about me and knows that I will do anything not to ruin my children's fun, including letting myself go through the day in pain, that he wants to rent me a wheelchair for the day. I think it's a good idea. I know that I can't go the entire day walking around without having to be flat on my back for the entire next week because of the pain it will cause in my right leg. My medication isn't working, something I need to call my neurologist about. Again. I don't know why she's so stuck on me taking Neurontin, but that's a different story. It has me wondering now if I can persuade my doctors to help me get a permanent wheelchair. We already know that I end up being housebound because I can't walk due to pain. I avoid day-long activities and outings because of it; have for three years now. I have even turned invitations down because of the physical exertion that it would take just to go out. To us it makes perfect sense, but I don't know that it will make sense to the medical community. I guess it doesn't hurt to ask. And it's not like I would take advantage of it. I would only need it so we could do all day outings like museums, fairs, festivals, concerts and such.

Stroke recovery is a never ending process. It has been quite a journey trying to find the right doctors, haggle with insurance and fight for my patient rights. It upsets me that I still have to deal with stares and ugly looks from perfect strangers when I park in a Handicap space. But I have finally found my voice. It took a stroke, but I feel I finally know who I am. Deal with it.

Bad Medicine (One Week and Counting...)

It is no secret that I have been a big proponent of Botox for migraines. It was the only thing that helped me control my migraines when they got so bad that I was suffering from them on an almost daily basis. Unfortunately, I only received one round of Botox for migraines before my insurance lapsed due to a job change. I am currently awaiting approval for the treatment to restart under our current insurance plan; but let me tell you a little story about what happens when your insurance company takes the liberty to charge you for a treatment you never received.

In June of 2012 I received my first Botox treatment and it was meant to be re-administered every three months. Late August of 2012 I called the doctor's office and requested the reorder. I knew at the time that my husband would be changing jobs and that our insurance would be lapsing on October 15. I informed the doctor's office of this. I called the office every week through mid October to inquire about the Botox order and was told that it had either not yet been ordered or had not approved by the insurance company. By the last conversation, I told them it was too late and the order would have to be cancelled.

Many months later I began to get bills from Optum Rx (previously Prescription Solutions) for $105. I had never used Optum Rx, so I never opened most of the letters I got from this company. I didn't know at the time that they were previously Prescription Solutions. By the time I opened the letters, the debt was in internal collections. Well, unfortunately for me, my new insurance company, in their infinite wisdom, has chosen Optum Rx as their mail order provider for all my convenient prescription needs. And now Optum Rx has placed a hold on my account because of this $105 debt.

I called Optum Rx and very clearly stated that I am NOT validating this debt, but I am inquiring to find out what it is about. Guess what? It was about the Botox treatment I never received. Say what? I told the lady on the phone the whole story, but she could have cared less because, after all, she has a designated script to stick to. She has to get me off the phone to get to the next caller. She said because the Botox was under my name and was shipped to my doctor, it was my responsibility. End of story.

Two Problems with that:

1) I cancelled the order.
2) Prescription Solutions had a policy that they had to have my verbal permission to act on my behalf in order to ship a controlled substance. How do I know this? Because I had already been through the procedure once before. AND because they called me exactly one time to try to get my permission for said shipment. I missed the call and it had gone to my voice mail. That prompted me to call my doctor's office to reiterate that I no longer had insurance and to cancel the order. Why do I remember this? Because I went off on them about having had two months to do their job and having done it very poorly.

The Optum Rx lady suggested I call the doctor's office clear up my debt but that the hold on my account would still stand. So I told her that I would never choose by my own free will to ever use Optum Rx as a mail order prescription company. I hate mail order services and much prefer my local Walgreens. Yeah, I said that.

So I called the doctor's office and they called me back the next day. She was very nice and genuinely sounded concerned, especially after I told her the story about they had dropped the ball and that I was now seeing someone else (it not me, it's you). She read my file notes to me. According to what the insurance company told them, they tried to contact me multiple times and due to nonpayment from the patient (me), they were unable to ship the Botox.

What?!?! Hold the phone.

If you consider calling me once and leaving me one voice mail, contacting me multiple times, then yes, you contacted me multiple times. In June of 2012, when I had my first Botox treatment, I paid for it happily. Of course, I also recall giving the company handling this controlled substance my verbal permission to act on my behalf. It was procedure because the FDA regulates Botox shipments. I also remember Optum Rx (then Prescription Solutions) leaving me that one message seeking my permission to ship the Botox. They never got my permission to ship anything. It may have my name on it and may have been shipped to my doctor, but I never gave them my permission. So it is really my responsibility? And here's the kicker.

Wait for it...

My doctor's office never received a shipment of Botox with my name on it. What they did receive were a bunch of nasty notes from Optum Rx saying that I am a patient that refuses to pay for services.

Services Optum Rx claims to have rendered. Services I never received. Services my doctor's office can prove they never provided me. Not to mention a now missing box of Botox. I bet the FDA would love to hear that.

So to update my little story, Optum Rx requested my contact information on Friday, October 4, 2013 for customer service to be able to reach me. They haven't reached me yet... I'll let you know how it goes when they do. Till then, I'll keep posting Bad Medicine if you'll keep sharing it because as a stroke patient, I know how important it is to keep to my medication supply in stock.

Small Complaint

I don't quite understand how some things operate. I take Neurontin to help with the chronic pain I developed after my stroke. I started on a low dose and went up to a higher dose. The medication is not working to alleviate the pain, by the way. The higher dose was making me drowsy. I called the neurologist's office yesterday to tell them it makes me too drowsy to take during the day.

The last time I was in the office, I told her the medication wasn't working. That was the reason for the increase in dosage. The response to my most recent complaint was to decrease the dosage. How does that help? If the lower dosage wasn't helping the pain (Hell the high dosage isn't helping the pain) why am I even still taking the damn medication? I'm right back where I started. I'm taking the minimum dosage that I already said didn't work. I'm so frustrated.

On top of that, no one has ever figured out what causes the pain to begin with. All I've ever heard is that it happens but is highly unusual. Well, guess what. Nothing about my case has been 'usual' since it begin. I had two strokes at the age of 29. None of the medication has ever worked. All my other doctors gave up and just pushed pills. No one will formally diagnose me with seizures or chronic pain but will tell me that's what I have. No one will help me apply for disability. And now I get to keep taking a medicine that doesn't work? For what? My next appointment isn't until December. And doctors wonder why I get so frustrated with my health problems.

One Week Later

It has been one week since I started taking Ranexa for my chest pain. The good news, the very good news, is that I can walk across the parking lot without sounding like I ran a three minute mile. That brings me one step closer to my goal of being able to work out again. Then maybe I can counter act the weight gaining side affect of my other medication. The bad news is that it still makes me really nauseous so I haven't been able to eat as much as I would like. My chest pain has decreased as well. I am so much more comfortable than I was a week ago. Not perfect, but a significant improvement.

Today I am going to call the neurologist and talk to her about the side effects of the Neurontin. That's the one that is making me gain weight. But I can't exactly call in and say, "Hey, my vanity is getting the best of me, is there anything else we can do to help with my chronic pain?" But it does make me really drowsy during the day. And that is a really big problem because I have things to do that don't always include sleeping on the couch. Then again it is a really good excuse not to do housework...

I may have to rethink this...

Cardio Says What?

Yesterday I had my follow up with my cardiologist. He hasn't given up on me yet. We went over all my test results again, talked about how I was feeling, and tried to come up with a plan. And I found out I lost two pounds.

One of my previous test results indicated that I had an increased risk of having a blood clot somewhere. We had decided that it was probably because of the existing clot I have in my left carotid. We know that I don't have any clots in my arms, legs or lungs. So now the current theory is that I may have some very small clots in the vessels in my heart. I think it's similar to angina. When the oxygen gets cut off to those parts of the heart, it can cause pain.

To help out, we are going to try a new medication that is for chronic and recurring angina. If it works, great! If not, we'll revisit the situation in two weeks. I'm not a big fan of the side effects, though. The medication is Ranexa. It makes me feel dizzy and nauseous but I'm going to stick with it. It's too early to tell if it's working or not yet. But considering that I've been living with chest pain and shortness of breath off and on for three years, I'm willing to try anything.

The Ruby Slippers

I had set myself on a predestined path. I married young. We children early in our marriage. I had returned to school to get started on a career in forensic science. I was on my way. I have always been a little like that. My own little freight train, chugging along, not paying much attention to what was going on around me. I liked having everything planned out. I liked the comfort of knowing what was going to happen the next day, week and month. I enjoyed the routine of my little life.

When my stroke derailed my plans I tried to make it a temporary stop. I went back to school within a year. And I failed fantastically. I went back to work. And I failed fantastically. I tried to stay home and I failed fantastically. My place in the world had changed. I had started on a journey that I was ill prepared for. The things I wanted and the things I needed were at direct odds with each other.

I wanted an education. But my short term memory had been affected by my stroke. I had a hard time remembering what was discussed from one class period to the next. I couldn't hold on to information long enough to pass the exams. Medication was affecting my concentration. I have seizures because of my stroke and have to take medication to prevent them. They have the unfortunate side effect of messing with your ability to concentrate. After one full year back, a change in majors, and money spent just to drop courses, I made the decision to put off going back to school. Probably forever.

I wanted a career. When school didn't work out, I set about trying to find a job. I found a part time job that I adored. But after two days on my feet, I spent three days on my back. Being active for two days in a row proved to be too much for my post-stroke body. I was less active in school than I was at work. It proved to be too much when my seizures returned and I was put on driving restriction. Eventually I got to the point that I could barely move so I made the decision to walk away from my job.

Now I am at home. I like working on my scripts and on my blogs, but it has been quite a transition. I still have days that I can barely walk even though I don't do nearly as much as I used to. I don't do much housework, but that is a personal decision. I just never developed the taste for it. Besides, I have kids to do it for me. All in all, I hate being at home. I loved the hustle and bustle of my old life. I loved work and school and kids and family and doing it all at the same time. Now everything feels so slow. I move at a snail's pace. I am home waiting for the kids to get home. I home waiting for my husband to get home. I am home waiting for the next time I have something to do. I am at home waiting to get away from home. I am always waiting. I don't have my own life anymore. And it drives me crazy on an hourly basis.

I'm a person in transition. I don't know who I am anymore or where I am going, but I am learning to do it on my own terms. I need to. I used to think I knew everything. This experience has been good for me if for nothing else than to teach me to slow down and appreciate my life. I get it, but can we move things along now?

"I am convinced that the only people worthy of consideration in this world are the unusual ones. For the common folks are like the leaves of a tree, and live and die unnoticed.” 
― L. Frank Baum, The Land Of Oz

The Scarecrow

We had a change of insurance this year and with that change I opted to find a new neurologist. I grew tired my last one because he began to treat my problems by shoving more pills at me instead of listening and trying to correct the problem. I know that I have some weird problems and I know that I am an unusual case, but if you're not capable of dealing with it, I would much rather be passed on to a colleague than just passed by.

After my stroke, I developed chronic pain in my right side. It is constant but varies in intensity. Some days I can barely walk, but others I can be pretty active. My new neurologist is not willing to rule out a form of epilepsy due to stroke. And finally, my migraines have worsened considerably over the last three years. So you can imagine why I can be a bit of an enigmatic patient.

I am still leery of my new neurologist because she seems very focused on getting one particular new medication to work for me. But she did take me off of two other ones. And as far as I am concerned, the fewer pills, the better. She did refer me to a headache clinic because she realized that my migraines were out of her realm of expertise. I am grateful for that. And when I do go in to see her, she sits and talks to me like a person should. She never rushes, interrupts or makes assumptions. She listens and makes me feel like she may really have my best interests at heart. In between appointments, her nurse calls to check on my progress. So I think I'm going to stick with her a while longer.

My headache specialist has been really impressive. He made me feel normal. I wish he dealt with chronic pain, too. I got re-approved for Botox for migraines. I am really excited about that because Botox was the only thing that helped to prevent my migraines. He is also trying to find out what is causing all my headaches. I have them nearly everyday. And for anyone that has had migraines, I hope you can empathize. For anyone that hasn't, I hope you don't think I'm just whining about a headache. This doctor has told me that if we can get down to the root of the problem, we can help make my days more pain free. That would be grand.

Pain is the biggest side effect I have from my stroke. I remember it setting in right away. I remember being in recovery and being pain. According to the neurologist it happens, but it is highly unusual. So I thought maybe if I deal with the things that aren't so unusual, I can slowly start feeling better. I'm working on my migraines and my chest pain. Writing helps me work on my agraphia, which is trouble writing after a stroke. I am doing really well with my aphasia as well. Every once in a while I slip and say something really off the wall. But my brain seems to be making the new connections I was promised it would.

"Brains are the only things worth having in this world.” 
― L. Frank Baum, The Wonderful Wizard of Oz

The Tin Man

When I had my first stroke in May 2010 I was lucky enough to have a neurologist that went searching for the cause. The cause ended up being a congenital heart defect that had gone undetected my whole life. I never had a heart murmur, chest pains, or shortness of breath. But I had a stroke at the age of 29. I had open heart surgery to correct the hole in my heart and subsequently had another stroke. Since then, I have had a lot of problems with my chest.

I remember very clearly what happened when I saw my heart surgeon after my surgery. I had made an appointment with him because I was experiencing moderate chest pain and shortness of breath with very little exertion. It was quite a while after my surgery. The pains of the procedure had faded and a new pain had set in. My cardiologist wasn't being much help so I thought I was getting a second opinion. The surgeon came in and sat with me for a moment. Literally. His clinical diagnosis after one minute was that I was depressed and that all the pain was in my head.

Eventually the ache did die down but it never fully went away. I never was able to get back up to my previous level of activity because I have never been able to breathe again. I have always had shortness of breath after minimal activity. It doesn't stop me from trying. During the school year, I walk two miles everyday walking the kids to and from school. I do yoga when I can. I still run errands and do things around the house. I'm waiting for this Texas weather to cool down so I can work in my yard more comfortably. So I am not inactive. Just not back to my old self. In March, out of the blue, the pain came back and the shortness of breath got much worse.

Off to a new cardiologist I went. At first I really liked him. He seemed to be excited about the challenge I brought him. He got the old test results from my hospital stays and started ordering new tests. When everything came back normal he started running out of things to test. My EKG was normal. My echo-cardiogram was as normal as can be for someone who had heart surgery. The only blood clot I have is the one in my brain. My stress test was normal, aside from the chest pain and shortness of breath. My lungs are clear of any blockages. My oxygen levels are great. In fact, the only thing that has come back abnormal are my triglyceride levels, which no one has a good explanation for. They are high even though my life style would actually lower them. I've always been a mystery.

After my last test, his nurse called me to give me the results and to schedule a one month follow up. I asked her if there was anything I could do in the mean time to help with the chest pain and shortness of breath. And she said no and proceeded to schedule the follow up. I cried. But I was crying a lot those days. I remember the last time I was in his office. This doctor who had seemed so excited to have a challenge had come to standstill. I saw it in his face. I have seen that look in many doctors before him. And it's not his fault. Not really.

No one knows what to do with me. What do you do with a girl who had two strokes right before her thirtieth birthday? If I was in my eighties, maybe feeling this bad all the time wouldn't be so abnormal. But here I am, in my thirties, trying to raise my kids and have a normal life. Everything has changed so fast that I would really like to have the stability of keeping the same doctors. My follow up appointment is on Monday. I hope he either has new ideas or good news. I guess we'll see.

“I think you are wrong to want a heart. It makes most people unhappy. If you only knew it, you are in luck not to have a heart.” 
― L. Frank Baum, The Wonderful Wizard of Oz

A New Leaf

I decided to move Dizzy Diaries over to this platform because I know that if I open Blogger and see Dizzy Diaries (the blog that started it all) staring at me right in the face, I'll be more apt to updating it like a good writer should. I haven't updated Dizzy Diaries since I decided to leave my job this past Summer. That was one of the hardest decisions I have had to make. So many things have happened since then and I can't possibly relay them all at once. I've decided to break this down into different sets of blogs. This one is going to be the hardest one to write. I want to to share with you the emotional turmoil I went through this summer. One of the things I know I need to work on is sharing the emotional side of stroke recovery, chronic pain, and migraines.

A month ago if you had asked me how I was doing, I would have said I was fine. And I would have been lying through my teeth. From June through most of August I struggled with, what for me, was a pretty severe depression. I felt that I had lost everything and ended up right back where I never wanted to be. Stuck at home. I never wanted to be a housewife and a stay at home mom. I tried it and failed miserably. I am no good at being at home. I'm a terrible housekeeper, I'm impatient, and get anxious when I have to stay in one place for very long. All I ever wanted was a family and a career. I got my family and was working toward a career as I went back to school. But, I had to quit school because of my memory and concentration problems that were a result of my stroke in 2010. So I set about finding the career I always wanted. I did. I loved my job in assisted living. But my body hated. I started having seizures again. I had to make the decision to take care of myself. Unfortunately, that meant staying home again. And that broke my heart.

I spent so many days crying and whining and trying fruitlessly to find a way to change my situation instead of finding peace with it. Nothing was going to make me feel any better. Then came the news that I was no longer allowed to drive because I was experiencing periods of non-responsiveness (my seizures). Color me thrilled. Now, not only did I feel like I was being shoved into this pretty little prepackaged idea of "Happy Homemaker", now someone was trying to try to tie an apron around me and slap some heels on me. I can't even leave my house? Are you kidding me? May as well throw me a vacuum cleaner and a cute polka dot dress. I'm really more of a shorts and sneakers kind of girl.

By the end of July I blew up. The kids were arguing, the mother in law was butting in, the husband had started a new job, the house was a mess, I needed some things for dinner and I was miserable. I yelled some obscenities, stormed out the door and drove to the grocery store. And do you know what? The world went on.

When I got back, I made dinner and locked myself in my bedroom. I think even my husband was afraid to come in at first. I couldn't stop crying. My daughters had written me an apology note because they felt it was all their fault that mommy was going crazy. I still have that note. I think that note saved me. I could do this. I didn't want my kid's memories to be filled with this crazy woman who blew up and stormed out of the house. This woman who cried about everything and stared off into space. Who didn't take them to the pool or the park or play games or sing songs or danced or tickled them or smiled anymore. This woman who always yelled and never strayed far from the couch or the bed. Who was she? Certainly that's not me. Can't be me.

Change doesn't happen overnight. I wouldn't say that I'm even completely better yet. But I feel more like the Laura I knew. I get up every morning and talk to the kids while they get ready for school and we all walk to school together. I laugh more, smile more and yell less. Most days. I have a lot of doctor appointments right now trying to fix the physical things I can fix. I know that will go a long way to helping me heal. I am surrounded by people who love me and support me and forgive me more than I forgive myself. I know I can never repay them, but they know I love them. And I hope that'll do.