A Step in the Right Direction

Last week I finally heard back from my new neurologist. I had already seen the hematologist about the blood clotting issues, but had been waiting on the referral to the new neurologist. I got the call, and nurse told me "right now, we are looking at 9:30am... on May 29th..."

My heart sank.

I knew that there are tons of people out there that have issues, but I also wanted to make a plan so I could get my life back on track. I told her that would be fine, but asked if I could be on a cancellation list. She told me that was fine, and I will hopefully hear something a lot sooner than May.

On Monday morning, I was home with Alex. I had cancelled my physical therapy appointment because he wasn't feeling good, and we were about to take a rest. I got a phone call from the nurse, asking me if I could make it to the neurologist on THAT DAY at 1:30, since she'd had some cancellations.

YES!!!

I told her I'd make it work, and would have to bring a kid with me. I was SOOOO excited, even if that didn't leave me time for a shower. I never like to go in public "undone," let alone meet a new doctor that I have to convince I am not crazy. I did my hair and slapped on some makeup, and we headed out the door.

I was having trouble over the past week, where even when I went to sleep at night I could watch my body spasm and twitch about. Sleep had gotten interesting, and I really just wanted some relief. While I surely didn't think I had a ticking time bomb sort of issue, I was about to lose my mind!

I arrived at the doctor, and filled out fifty seven pages of medical history. I pretty much told them everything that every happened in my life, which has been a challenge to write since my handwriting has gotten funky. I remember thinking to myself "I need to type all of this so I can just hand them a copy, and make multiple copies of that." I also remember thinking I would look really cool handing a booklet to my doctor. Hypochondriac anyone?

But once you've had cancer, they kinda expect you to give tons of info. And if you don't, they ask you TONS of questions anyway. So, I am thinking the booklet might be a good plan.

The nurse was incredibly friendly, and told me Alex was fine to sit with me. I could tell he was nervous, because he opened his water to drink it and spilled it all over the floor. Without missing a beat, she handed him a few paper towels, and told him it was only water. I appreciated that she did her best to make him feel at ease.

I was a bit nervous, meeting a new doctor and all. I was also nervous to talk to the doctor in front of Alex, because I don't want him worrying about me. The good thing about Alex, is he has the ability to hyperfocus. It can be really bad when you are trying to get his attention, but it was fantastic when I was conversing with the doctor. She even giggled when he made motor noises while playing his game, because he was completely oblivious to her in the room and our serious conversation.

The doctor: when she walked in, I was a little nervous. She looked nice, but she also looked extremely professional. I had thought back to all of my doctors I've seen, and I have had some doozies. Unfortunately, that makes me a bit skiddish when meeting new docs. I just didn't want her to think I was crazy, because I was tired of my issues being belittled. The truth I have learned is that if I am a male with the exact same issues, I would be taken seriously. Because I am female, sometimes they play the "hysteria" card, and blame it on hormones or mental illness. It's a sad world in health care when doctors play this game. They threw that crap on me the week before I found out I had cancer. One minute I am just crazy; the next minute they are telling me I have cancer, and apologizing. Nice...

So, I answered her questions, but I didn't want to divulge too much info yet. I didn't want to run her off. She seemed nice enough, and she was really thorough. She started with the hospital event in December, and went over that info with me. She made a plan for the stroke care, since she said it was probably a Transient Ischemic Attack. It sounds like the same thing that happened in 2009, and she was glad the hematologist was looking into the cause. With infertility issues that may have stemmed from this clotting problem, and the TIAs, she decided that I needed to remain on long-term aspirin therapy, and look at minimizing other stroke risk factors. Fair enough. We talked about those, and got a plan squared away.

I was already beginning to love her, because she was actively making a plan. I had concerns, and she was validating them and making a plan! No finger-pointing or whining! Just matter-of-factly telling me what we had to do, then asking me if I thought that was a reasonable plan.  Then she moved on to the other issue...

I was really nervous to talk to her about the tremors, I guess because I get emotional about them. I really didn't want to cry in front of the doctor, but it happens when I have to tell her how embarrassing this has become, and how it has affected my personal and work life. I could already feel the tears well up as she started asking me one hundred questions. When I started telling her how I shake when I write, when I type, when I put on makeup, that's when I started to cry. I realized that everything I do to get ready, to be productive, to be a human being, is now affected. I told her how even when I sit and watch tv at night, I feel the twitching and spasms, and see parts flop about. 
She told me it sounded like I had rest tremors and tremors with activity. I agreed, and told her that has been what confused me. I seem to overlap with the Essential Tremor and Parkinson's Disease diagnoses, and that confused me. I explained all of the family members that had both ET and PD, and told her that essentially there was a "whole lotta shakin' goin' on." She really appreciated that comment, and her giggle lightened the mood quite a bit.

She asked me "why on earth has no one tried medicines for the tremors?" I told her how people observed them, but either shrugged them off as anxiety or told me I was crazy. I know I've had stress in the past, but this has gone on for too long, and it's gotten a lot worse! She told me that wasn't a very smart plan, and she wants to start me on meds right away. The only way to know if they will work is to try them, but she wants to start me on the most conservative (and cheapest!) drug first. She wants there to be benefit, but not at the expense of side effects, or building up a tolerance to meds early in the treatment phase. She told me that meds should help me function easier, and that I can work on exercises to build up my strength and balance, until those start giving me more trouble. Essentially, she let me know that all of this will progress, but a proactive approach will help me function independently for longer. I liked the sound of that. 

She also wanted ALL of my records from all the other doctors, because she wanted to sort through everything and see what they were searching for. With the swallowing issues that required esophageal stretching at the Mayo Clinic, she wants to make sure that wasn't related to the swallowing problems of PD.  The balance issues that have caused broken bones and injury sound like they've been linked to it as well. I had to wonder what would have happened if I had met her five years ago instead of the other twenty doctors. I guess we can't go back, and it's really worthless to think about all of that. I'm just glad I've found her now.

So, I started on propanolol, and I went ahead and started a more aggressive dose. This is used to lessen the tremors, and decrease the anxious reaction they are causing. It's actually a beta blocker used for people with heart issues. She said it was a good first choice because it didn't have a lot of side effects, and it was cheap. I just have to be careful of standing up too quickly- sometimes the blood pressure can take a dive, and people pass out. I think I can remember that if it means making a difference in my daily routine! She said I could feel results fairly quickly, but to give it a week or two to really gauge its effectiveness. She asked me if it was reasonable to meet back in two months to see how the treatment is working, and for me to promise I will get an opthalmology evaluation and talk to my sleep dr again. PD has sleep problems associated with it, and she wants to make sure we are all on the same page.  I hadn't been to the eye dr in a while, but have had some vision issues associated with both the TIA and my daily life. My left vision has been blurry off and on, and she said that very well could be creating that nausea feeling, and the headaches I sometimes get. She wants to make sure everything is intact from that perspective, and I am grateful that she's on the ball.

So, after getting back into Tullahoma, I stopped by and picked up my new meds. I was a bit leery that a drug costing $4.25 a month could be the answer to my worries, but I gave it a shot. I took a pill and went about my evening routine. I really didn't expect much of anything to happen.

I did feel a bit more relaxed about life. Honestly, I didn't give a flip what happened that evening, which was kinda nice. I didn't feel drugged or anything, but it seemed like things moved slower. It wasn't half bad. I couldn't tell if the tremors were less, or if I just didn't care... LOL

I headed to bed at a reasonable hour, and woke up at almost 7am!! WHAT??? I had slept almost 10 hours and didn't wake up! That NEVER happens. Ok, I did remember waking up briefly one time in the night, because I was having really odd dreams. On Tuesday morning, I did a little research and found out that was one of the commonly reported side effects (vivid and sometimes strange dreams). 

Day 2 was pretty decent, but I found myself sleeping quite a bit during the day. That was a little strange since I had slept so long the night before, but I was wondering if I was finally catching up on sleep.  Tuesday night, I was asleep by 9pm. What time did I wake up Wednesday? 7AM!!! ANOTHER 10 HOUR NIGHT!!!

Of course, I woke up once or twice from strange dreams again- nothing scary, just very realistic and odd. I can't remember them now, but they were worth waking up for.  Today I had to go meet someone for lunch, and I was a bit nervous. This was the first social opportunity since starting the medicine, and it gave me an opportunity to see the meds in action. I've been getting anxious because I don't want to look odd in public, which I am sure makes everything worse. Well, the thing that makes it worse is when people point it out (which happens EVERY DAY). I really didn't want to look out of place, and I practiced my hand-holding I do to make it look like I am thoughtful instead of shaky...

I took half a dose earlier in the day, and the other half an hour before lunch. I wondered if the dose was what made me sleepy the day before, and I didn't want to risk that with the driving to Murfreesboro. So, I figured the split would lessen the blow of the meds. 

I am happy to report that lunch went well! Either I didn't care about the shaking, or it really did help! Or, my lunch mate was just too polite to ask... LOL  It was nice to be out and be social, even if it did mean I had to sit and worry about this issue for two hours. At least I was getting out there and living life! And because I am like Garfield and love me some lasagna, that's what really pushed me to go... ;-)

We'll see what happens over the next few weeks. I meet with the hematologist next week to come up with a plan for my blood, and I go back to see my orthopedic surgeon to address my healing of my knee. I am supposed to start back to work the week after that, if I am about to get a handle on my health. I want to balance a medication that makes me safe and productive, with the ability to be productive at work and do what needs to be done. The reality is that teaching special education requires 150% alertness and physical function, and that's what is making me apprehensive right now. When I take a med to increase my physical ability, I am sacrificing alertness. At some point, I need to make a decision about what's best for me and my career. Unfortunately, I've always been the provider and never got to worry first about my health and comfort. Right now, as a single parent and provider, I am trying to be thoughtful in balancing my well-being with the well-being of my children. Pray for me on that aspect.

What I'm really hoping for is some time to make a plan. The whole reason I created this blog was as an extension of my project I did for turning 30. I still had goals that I wanted to complete by 40, and I guess I've been lax in making a plan about getting anything done. Maybe the best part about facing my new reality is knowing if I want to reach those goals, I need to plan on sooner rather than later. That's probably true for all of us, so I guess it's a good thing to realize now. :-)

Mother's Day

I remember the projects we would make in school for Mother's Day- the handprints that we would morph into flowers, hearts, or some jungle animal. We would make cards where we would guess our mother's age, tell her how much we loved her, and list our favorite things about her.  We'd make a craft or little token to attach to the card, and mothers' faces would beam as they opened our handmade gifts.

Over the years, I came to realize what it really took to be a mother. I knew that they would be the parent to get up in the night when I was sick, and my mother always made my lunches, listened to my worries, and made sure my hair looked nice for picture day (and every day). 

But I didn't understand the REAL scope of being a mother until I actually became one.  I remember waddling into church on the Mother's Day before I had Alex (only a few days before I went in the hospital). I remember being MISERABLE, and knowing this all needed to end soon. I remember my exhusband handing me a gift, but saying something along the lines of "even though you aren't a mother yet..."

I was confused: what the heck was I doing? I guess I was just hanging out in physical agony, waiting to finally be a mom. I surely wasn't up fifteen times a night either in the bathroom or groaning from heartburn... I wasn't waddling down halls physically LIFTING my belly because the pressure was separating my pelvic ligaments. I wasn't seeing spots and having headaches because I was "pretending to be a mom."  That pregnancy earned my Mom status from the very beginning... From the moment I knew I was pregnant, I worried constantly about the well-being of my child. And this hasn't ended, even as he (almost six years-old) sits next to me while I type.

Being a mother is a neat thing: we have a chance to care for, support, and encourage our children in all facets of their lives. Don't get me wrong- I'd like to go to the bathroom in peace or even read a book every now and then. But I wouldn't trade the fact that my children WANT me involved in their life.  I like that I am able to be there for all major moments of their lives.

What makes it hard is that I am a single parent.  It's tough when I am the sole parent, and I am currently running low on energy. I am remembering back to about 1.5 years ago, when I was balancing working and raising two kids.  I remember how Carly was 2.5 years old, and was having a hard time sleeping through the night (ears were causing night SCREAMING). I remember collapsing into my office chair at school in between classes, and wondered if I could fall asleep instantly. I was running on empty, and I wondered how single mothers did it when they didn't even have a support system.  I was grateful that I had my parents around to help me raise the kids, and I felt really bad for those women that are really going it alone.

Now that the kids are 4 and almost-six, I realize they require a lot less energy.  This is good, because I now have a whole lot less energy to give.  I am three weeks into no thyroid hormones, and still have two weeks to go.  I feel like a snail, and snails don't raise human babies! There's a reason!!!  I try to put on a brave face and suck it up, but inside I am DYING.  For example, I want to review my week for a moment (before I start my guilt-trip, which I am entitled to):

On Monday, I worked all day.  Then, I took an end-of-course test to a homebound student, and sat while she took the test (which was untimed).  Afterward, I headed home and got to the house as everyone was eating dinner.  Thankfully, I had a little time to eat, check homework and get kids ready for bed.

On Tuesday, I worked all day as well (including hosting some meetings- prep work for that!). At the end of the work day, I flew out of school and headed to pick up kids, change clothes, get pizzas, and head BACK to school to host an honor society end-of-the-year picnic. I stayed at the school pretty late, then got the kids home in time to give them baths and head to bed.  I crashed without doing any more work at home.

On Wednesday, I worked all day, then headed BACK out to homebound to give another EOC test.  I felt like I was there FOREVER (because it was untimed!). I got home in time to eat with the kids, then did spend a little bit of time with them.  I was grateful to see them, but I was also EXHAUSTED at this point. I wondered how on earth I was supposed to make it through the rest of the week...

On Thursday, I headed to work at 6:55am, and came back home at 9:25pm.  After working all day, I gave the FINAL EOC test, then did drive home quickly to recurl my hair, move laundry, lay out pajamas, and kiss the kids (since I wouldn't see them that night!). I got back in time for the awards banquet, stayed until after 9pm, then headed home to fall asleep as quickly as I could to wake up at 5am and repeat...

Except last night, I spent the entire night sick. Which made Friday morning MISERABLE... And I did make it through today, but BARELY.

I am not listing my schedule to show off anything, or as a guilt-trip on anyone else other than myself.  I am honestly surprised I am capable of such a schedule. I am also wondering what the heck I am thinking?!?

Someone out there is probably wondering "why are you teaching homebound while sick?"  Well, the short answer is "when I have to pay bills, the companies don't care that I am sick, and they really don't care that I am STILL not receiving my full child support..."  So, instead of working abbreviated days (which would be smart with my physical state), I am working OVERTIME.  I know hospital bills will add up, and continue to add up as both children have surgery in July.  So, I take the work as it's offered.

The guilt trip? It's on me. I felt absolutely TERRIBLE I didn't see my kids much this week. I know this is not a normal week, but I also felt like I missed a lot of important things. It's hard enough when there's only one parent- it's pretty bad when the one parent is trying to see them at least once a day.  On Thursday, I was asking my boss how long he thought the awards dinner would last.  He told me, and I said "that's fine- I just wanted to know if I should tell my mom I won't be able to tuck the kids in." He made a sad face at that response, and I could feel tears welling up in my eyes. It really sucks to do this alone sometimes...

It feels a bit different in light of the cancer, and all that's come along with it. Whereas I would normally feel exhausted, and try to keep positive about the fact that one day they will grow up and leave and I will miss them... Now, I feel a bit guilty, because I know they will have normal days, and no matter how I feel I try so hard to appreciate them, to leave them with good experiences, and to make everything ok, because heaven forbid something happens- I wouldn't want them remembering when I lost my temper!!  Balancing all of this has really just left me drained...

The truth is, I love my children more than anything.  They are the whole reason I am keeping on.  Honestly, after all that's happened, I would have thrown in the towel long ago.  They keep me going, because if nothing else- I need to make money to take care of them! But it's not just that- I know I want to show them that there are low points in life, and that we just need to push on until we get out of those spots. And right now, I am trying my best to show them a good example.  If I didn't have to be an example, I'd happily pull the covers over my head and try again tomorrow.

I remember the Mother's Day after Carly was born.  I had spent five days in the hospital following Carly's birth.  After spending a night at home, we packed up the goods, and I went to stay with my parents (along with Alex) for a few days.  I stayed there for a little bit, and moved back to the apartment in time to spend Mother's Day with my ex's family.  Carly's pregnancy brought serious complications as well, and I was still trying to recover (along with parenting a two year-old, and doing a lot of this by myself). I was grateful for my mother, who was trying to continue working while getting up with the baby through the night while I stayed with her.  And my sister-in-law Alli would come over and help with the little ones so I could try to nap.

So, when Mother's Day rolled around, I remember riding with Chris to go visit his family.  He stopped to get gifts for the mothers in the family. He pulled out two giant vases of roses for his mother and grandmother.  He handed me a small vase of tulips- because I didn't like roses... I was beginning to see a trend about his opinion of what I was actually doing here...

And maybe that's where my confusion about Mother's Day comes about. I am not playing the blame game, but I believe anyone would start to wonder when things like this kept coming up. I know it's not about recognition from a spouse or other adults, but that is KINDA the deal. Especially when this woman is the REASON for the children.

And this is why I am so thankful my children are at an age where they tell me every day that they love me.  I know they do love me, but there is something about hearing those affirming words- and saying them as well. They are good for the soul, and make every day feel like Mother's Day.  Even when I am out of energy. Even when I feel guilty about balancing work, school, daily obligations, and family. Even when I wonder what the future holds.  Even when I wonder how much fight I have left to give- they are there to whisper "I love you's" in the night.

And that will forever be the greatest gift I could ever receive- Mother's Day, and every day.