Just Breathe

The past week has been incredibly stressful, and I'm not sure why.

Wait, I have an idea why...

You know how there are said to be five stages of dealing with grief or a loss? It's a fluid process, and people move through the stages at different rates, and sometimes in different orders. Well, I think I've been going through sort of a grieving process. It's been four months since I had my broken leg and surgery, and I ended up with a visit to the hospital for blood clotting issues and a mini-stroke, then sat in the neurologist's office while she confirmed my fears of Essential Tremor and/or Parkinson's Disease (by fears I mean that I am smart enough to know what that can do to an active and excited young person).

So, my automatic response to any news like that is to pretend everything is great, and picture the ten thousand things I will do to show the world that I will overcome. If there's one thing you can do to tick me off, it's telling me I can't do something.  Even though people didn't actually SAY I couldn't do things, as a special education teacher, my mind automatically went to all of the things that will happen and how my life will never be the same.

On top of that, my shaking has been pronounced enough to start causing some injuries if I'm not careful. On a completely related note, I am thinking of retiring from mascara...

So, back to the process. After making the list of things I am going to do to show whatever is going on who's boss, I then fall into a funk. Man, I could write a manual on myself by now. I guess I need to give myself credit- a lot of people spend thousands on therapy to figure out what I already have. I have seen myself go through it before, and knew it was coming. I embraced the funk (NEVER thought I'd type that sentence in my life, so there's a first!).

It hit me when I had to resign from my job. Until then, I had been on medical leave, and I could pretend that everything was going to be great. This was just something simple, and I would bounce back in no time. Problem is that I spend 8-10 days a month at a medical facility, I have to put great care into most EVERYTHING that I do, and it's just getting worse. I think that bounceback is going to take a while...

As far as the job is concerned, it wasn't fair to the students for them to keep wondering if I was returning. I got into teaching because of the kids, and I know more than anything that they need consistency. They need it in behavior support, and they need it in teachers and staff. I couldn't lead them on when I honestly didn't know when I would be healthy to return. I also didn't want to return too soon, and risk having a MAJOR setback from stress (heart attack or stroke). I'd sucked up the stress for too long, and I knew it would eventually get to me.  So, I know I'll find something new that might balance everything out, and for right now I am going to focus on getting back to a balance. Find the new me. Some cool new age jargon like that...

So, during this funk, I was sitting in a chair and staring out the window. I had days when I honestly didn't want to move. It wasn't depression- it was just time where I could slow my body down. My body has caused so many symptoms, it's like I am always on high alert to notice things. I needed time to slow my body down so I could really think. It turns out those days were useful. I was able to prioritize some things, and make a plan for moving forward.

Today, I rejoined the yoga world. I had wanted to do it for some time, but I wasn't able to modify a lot of the positions to accommodate my leg. It turns out the knee is a pretty vital piece of the body, and every position change affects it (as I found out right after surgery!). This morning I went to run errands, then returned to stretch out and let my mind wander.

Actually, the video I used focused more on my breathing. I had to laugh at first, because it seems like such a simple task. Don't get me wrong- I love yoga, and I enjoy how relaxed I feel afterward. I have done various routines for many years, but I've never seen a video that spent the first twenty minutes leading me through various breathing exercises. The narrator told me to really feel my breath, and welcome it into every cell in my body.

I believe in traditional medicine, but I also believe a lot of alternative strategies work as well. Together, I think you can make a great treatment plan for a patient. No matter what I was wanting the meds to do, I wasn't focusing on a plan that would help me maintain and build some strength, work on my balance, and promote deep breathing and stress relief.  I think I finally found my missing piece!

After the yoga routine (4o minutes!), I decided to head outside for a walk. I had only walked short jaunts around the neighborhood, so this would be the first time I headed out any longer. I am going to my physiatrist on Friday, and I wanted to be able to give her an idea of what my body could do. I know it seems odd when people think "it's been four months, so why are you still hurting?" Well, the doctor looked at my wound and said the scar isn't even healed all the way, so everything under it is still working. He gave me an injection for all the inflammation in my actual knee, which is keeping healing from happening. Then, there's the broken bone, which does take a while (especially in a weight-bearing bone). He told me he wouldn't clear me for the football field for 9-12 months, and from what he hears, a special education classroom is a similar environment (insert laugh here).

I walked at a moderate pace for about 25 minutes, and took a path outside the neighborhood. I remember getting fairly far down the road and thinking "I sure hope I can walk all the way back!" and "maybe this is why I stay close to home?"  My leg was starting to bug me, and I knew it was going to be an interesting night. I know I have to push myself, but I also have to balance that with not causing more damage. So, I headed home and put it up for a while.

We headed over to my best friend Robin's house, and played with the kids and ate pizza for dinner. I was glad to be able to chat with a good friend, and enjoy some family time. This reminded me of another crucial component of my plan to feel better: I need to schedule more social time. In the past four months, I've had a habit of being a bit of a recluse. All of the medical appts have exhausted me, and that made me not want to get out and actually talk to people. Add to that the fact that I have felt yucky a few of the days, and I am surprised I didn't scream when I saw daylight today. I know I need to get out more, and today starts my plan in that respect.

In these stages that I'm going through, I guess I'd be Acceptance by now. I've made a plan, so I guess that comes after realizing life probably won't go back to the way it used to be.  That's ok; we just have to adjust. 

And breathe.

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. :-)