Emotional Breakdown Days

So, some days, I just have to break down. I feel it building over time. I know the breakdown is coming. But it's still so overwhelming when it finally hits.

Today, there were several factors contributing. I've just started rebuilding a home piano studio from nothing, after having to stop teaching 2 years ago (and once before that). So, after advertising for months, I finally have some new students. It seems like it should be easy: one student a day, four days a week. But I've been completely disabled for 2 full years (and a while before that). And I've been working so hard on rebuilding my health since my cranio-cervical fusion in August 2010. I know from my first fusion in 2003 that it takes about 2 years to fully rebuild. But I also know it doesn't always work, since my first fusion failed. I've been devoting all my energy to getting healthy (and planning my wedding, which was last summer, then marketing my new piano studio in a new city). But still, most of my energy since surgery has gone toward getting healthy. I eat healthy. I allow plenty of time for sleep (but can't actually sleep lately). I don't push myself too hard very often. But I do push myself enough to get the minimum of exercise needed each day to keep my POTS under control. But in reality, I spend a lot of time resting and taking care of myself.

But it just ISN'T ENOUGH. I am still SO sick. A GOOD day for me is when I get myself breakfast, take my pills, rest in the recliner for 2 hours, get my lunch, take my pills, rest 2-3 more hours...then maybe am able to get dressed by 3:00. 3:00 is a great day! This only happens after I've had tons of salt and water and high doses of Midodrine PLUS caffeine pills to get me going. I can have a couple of "active hours"-meaning not in bed or in the recliner. Most days, I get dressed just before dinner to be honest. And I still can't shower as often as I'd like. About twice a week.

Supposedly, my head has been fused in the optimal position this time....and so many people just like me are completely relieved of symptoms after this surgery....blah blah blah. My head hurts!!! My constant head pain is lower than before...around a 2 at it's lowest. But about half the days, I get a migraine, cluster headache, or a pressure headache that blasts the pain to a 7-10. And these headaches are all day headaches. And that's just my head.

Today, I had a baseline headache of about 4, but I had severe nausea all day. No vomiting. I know, I'm lucky there's never vomiting. But nausea and zero appetite are pretty freaking miserable too. Of course, sometimes I can eat, but my GI tract doesn't know how to digest food, and I get very sick from that. Anyway, today I was super-nauseated with a mid-range headache. I got through breakfast and lunch. And then, I crashed, which is a possibility every day. Something in my careful daily formula didn't work right, and I just never got going. I could barely move. When my husband got home around 3:30, I couldn't react to him. I could barely see through my slits of eyes. He rushed and got me a salt pill and water. That didn't work so we got a caffeine pill. I chugged 20 ounces of water. About 20 minutes later, I was finally a bit awake. But not enough to get up...just to open my eyes and maintain a conversation.

I had to teach a piano lesson at 5:45. And, like magic, I pulled it off. It's amazing how much you can fake. It took everything I had.

Then, the realization set in. I have a new piano student tomorrow. I have another new student on Monday and another new one on Tuesday. What in the world am I thinking??? How do I expect to build a business with my health like this? I didn't make it to the music store, so I don't have all the materials for the new student tomorrow. Plus, tomorrow is a 3:00 lesson!!! Why did I ever agree to teach at 3:00! And what am I thinking taking on new students when I can barely survive a day?

That's when it all just broke down. I just had to cry and cry at my mess of a life...at how hard it all is...at how pointless all of this hard work seems. I rebuild a business for what? Just to get overworked and end up having to quit again??? And disability won't even pay me since my marriage. So I can't even help that way.

But it's not just that. After we got married, I realized that I could get dressed most days, and my husband was gone a lot of the time. And I wanted something to do with my time. Something useful. Something to help out. Especially since we are barely getting by right now...or actually not really getting by.

Accepting less from myself is something I've done so many times. There were very high hopes for my life. I was supposed to do something great. I had straight A's, was talented, excelled at everything I did. I could do anything. Then, in high school, I had to start accepting less. At first, I just took one less AP class. Then, I went to a small school, cause it was close to home. In college, I had to take a year off for my first cranio-cervical fusion. I had such trouble picking a major, because I wanted to do more, but had to accept less. I finally settled on an interdepartmental major...just so I could graduate. And chose a career that I had already been doing for a few years, but didn't really enjoy. I went on disability at 22, and was in an electric wheelchair. I rebuilt, but got knocked back down and had surgery again at 26. I was down for a while. Now I'm rebuilding again. But it feels like a pointless cycle. Rebuild your life. Become more. Do something with yourself. Get knocked down so hard you have no choice but to do nothing. Accept less. Just survive. Start to rebuild again...

I don't see the point right now. It's all so hard. But for what? Should I even be doing this? Or should I accept that I can't do this? That my body is just not getting better and this cycle is pointless. That no matter how hard I try, my body will fail me. That the other shoe will always drop. This EDS body is not getting stronger. It's getting harder to hold together. My joints will continue to hurt worse my whole life. These symptoms are not going away. Headache is not leaving. Extreme fatigue is going nowhere. It's all just learning to cope. Learning new ways to manage. But it's not really about getting better anymore, is it? I'm past that point. I will have "good" and bad days. But I won't get better. This is the body I'm stuck with for life. And I should know from experience, that acceptance is the real key to emotional coping. If I can just accept that this is the state of my body, then I will be able to deal with it.

There's no more fight to "recover." It's just an ultra-marathon now...the kind with frequent obstacles, and uphill 90% of the time. It's all about endurance. And the only way to endure is to stay strong. Accept the course of your life. Accept this is the crappy body you're stuck with for life. There will be some better days. But most of them will be the same miserable fight you've been dealing with for 10 years.

I can't imagine why anyone would read this. But I had to write it today. It just got to be too much today. Some days are brighter. I know this intellectually. But it's a stormy life. And I've got to hold on tight, cause it's not getting any easier. I know that I wouldn't face this life without my husband, the best friend a girl could ever have, and my mom, who always listens and knows what to say, even when there's nothing to say. I would not deal with all of this without the love and support of my family. I would just give up.

I'm done with metaphors for tonight. Sorry. It's a rough one.

Happy Thanksgiving

I'm sorry if my last post painted a sad picture-my mood is definitely affected by the long days alone in my apartment. However, it's not all so bleak. My dear husband, Gmex, is the best partner I could ask for. He is constantly supportive of me. He takes care of me on days I need it, but also encourages me to do as much as I can comfortably do. He is always thinking of what might make my life easier and more comfortable. He's very patient when my body gives out or my mood plummets (or both happen at the same time!). All while working toward his PhD way more than full-time.

I couldn't have asked for or expected to find such an ideal life partner for myself. I know I'm a very lucky one, as chronic illness destroys so many relationships. We just make the most out of the time we can spend together. I obviously try to be as supportive and helpful as possible, but he deserves most of the credit for making it work. I know there are more good men out there. But I have the only one I'll ever need. I hope that everyone in my life finds this kind of satisfaction, recognizes it, and appreciates it.

In other news, I'm dealing with migraines that may be cluster headaches. Unfortunately, insurance only covers 8 Relpax a month, and I have the torture headache more than 8 consecutive days when they come. It's gone for now, but I am so scared for when it will start again. I have an appointment at a headache clinic in January.

I had an ob-gyn scare, but the biopsy came back clear. Ultrasound will be tomorrow.

Finally, there is a fascinating new theory on the cause of the EDS/POTS/Cranio-cervical Instability conundrum. Dr. Diana Driscoll has these conditions, as do her children, and she's been conducting clinical trials to support her theory. You can find it at http://www.prettyill.com.

Hope everyone is doing well. Happy Thanksgiving!

Married Life

I've been married for 3 months and living in Wisconsin with my husband. This means I don't live near family right now. So I spend a lot of time alone, while my husband is at work...and I mean, a lot of time.

I've been seeking work, but it's quite difficult getting a new piano studio going in a new area where you don't know everyone.

My health is still up and down, but reaching a better point, I believe. It's hard to write that at a time when I don't feel good at all, but overall, I know it's true.

I sleep about 10 hours now, down from 12, which has changed things quite a bit. Getting off of Topamax was difficult (insomnia, migraines...), but it was really decreasing my energy, so I'm glad to be off of it.

A Day in The Life
I tend to wake up around 10:00. I eat breakfast and rest until noon. On a good day, I try to get dressed and ready for the day from 12:00-1:00. I eat lunch at 1:00. Then, by 2:00, I'm ready to start the day. This only happens on good days, but it's a big improvement over the 6:00pm ready time I used to have.

This means that I really could work a few days a week pretty successfully. I just have only 1 student right now.

It's a bit of a difficult adjustment, getting used to being a "housewife." I spend the days doing laundry, cleaning, cooking, etc. I don't really mind. But it is lonely. I am proud when I have really productive days. But so many days are not too productive, and that's when I tend to get down. Finding piano students is mostly a waiting game. I put my information out there, but then just wait for someone to call.

So, I'm off to make today a more productive day. Gotta start somewhere. Why not laundry and a shower? Hopefully I'll be able to pull it off today.

Massage Miracle

Okay. I would never do this. But when something works, it works.

I think you can tell how desperate my situation has been. Bedridden.

June recommended trying massage therapy, heat, and muscle relaxants for 2 weeks, before we do any scans, in case I strained a muscle and had spasms going on from overuse.

June was right.

But more unbelievable than the fact that muscle injury could have been causing my vast array of symptoms is the fact that I found a brand new massage therapist in a new city, and he gave me the most effective massage of my life. In the past, I've never had a massage with noticeable lasting results before. But this was a new kind of massage. He called it neuromuscular. It didn't hurt. It was very slow motion. I didn't know it could possibly help so much. When he told me the effects would be more noticeable and improving over the following 24, 48, and 72 hours, I smiled, but didn't really believe him. But I wanted to.

But then, he was right. It's only been 48 hours actually, but the pain in my upper back is drastically improved. And I believe that my crazy EDS muscles were pulling on my spine and irritating my nerves. Because other symptoms have improved too, especially the nausea.

I do have a migraine today. As soon as I see him again, I will ask if he can work more on my neck to try to help the migraine area more. But he has already given me such a huge gift.

So, I'd like to share his website with anyone who may be in the Milwaukee area...even for a day. Just go see him. I'd even travel from surrounding areas to see him if I didn't live here. His name is Stuart Blystone. From my experience, he knows what he's doing, and he can really help.

Here's Stuart's page:
http://www.milwaukee.massagetherapy.com/

I just wish that all of my Chiari/EDS/fusion friends could find a massage therapist like him.

Maybe one day I'll find a physical therapist that can be helpful like some of my friends have found.

But I'm certainly grateful for the help I've found. I'll let you know how it goes in the future.

(I am simply sharing my own experience, and this should not be seen as a substitute for medical advice. I'm also not getting paid anything to share this information with you. :))

Dear June

I sent a message to June last night. I think it summarizes my current concerns:


Hi June,

This is Carolyn Richardson. I'm writing with a problem. I'm not sure who to go to for help, but it seems that your and Dr. B's opinion would be the most helpful place to start in trying to figure out my current situation. I got married sixteen days ago. The wedding day was fabulous. I was able to stand a lot of the day and even dance for a couple hours in the evening, though we did sit during the ceremony. Not surprisingly, the first week after the wedding, I rested a lot to recover from the exhausting day.

One week after the wedding, my husband and I moved into a new apartment. This day, there was a lot of cleaning, packing, lifting, and moving into the new place. It was a very strenuous day. I rested a lot, and I didn't carry anything too heavy, but I tried to do my part in any way I could. Since moving day, I have become sicker and sicker, and I have now been completely bedbound for 5 days. I'm having troubled describing the symptoms to family, because they are not exactly like my usual symptoms. They are a little different. If I am not laying flat, I now get a headache and nausea again. But my worst problem is a severe, burning pain in my upper thoracic spine that is very difficult to alleviate without very specific positioning. It also comes with severe nausea. And I've lost my appetite almost completely. I have a sense that my spine is being compressed intensely, and that it makes me choke and gag, along with the pain in my thoracic spine, and later, the headache.

I don't want to get stuck in this whole bedbound thing again, as I had just been getting healthier and I've been exercising regularly. I had even just begun looking for work again. I am on the verge of beginning my new life, in a new state, with my new marriage, healthier than ever. But the move has crushed me.

What should I try at this point? The pain in my back is so intense, I can barely find a tolerable position to rest in. And I can't sit up for long, because the nausea overtakes me. I'm also just transitioning to a new insurance, so I haven't seen anyone locally yet, but I should be able to very soon.

Are there any scans I can have done, to check on my fusion, or on the spine (area between the shoulder blades)? I'm sure I could get my GP to rewrite them.

Do you have any thoughts on what these symptoms could be?

Thank you so much for your help.

The Long Road of Recovery, 10 months post-op

I know. After four months, you can't really call yourself a blogger. I have excuses and explanations. Instead, I'll try to remember, with my limited memory, what's been going on, or at least where I'm at now, 10 months after my cranio-cervical fusion revision.

The fun stuff: I've been planning my wedding. It's less than 6 weeks away. Am I prepared? Of course not. I'm not magically healed and functioning like a normal person. I've done what I've been able to do and planned what I can, and the rest will get done well enough. I don't have too much anxiety about it though. I'm actually just looking forward to a very happy day.

I am concerned about my stamina on such a long day like a wedding. It's difficult to be "on" all day, when your body feels so "off." It actually makes me quite emotional to have to fake it for too long at a time. But I'm doing all I can do to prepare, like plenty of rest and enough exercise, trying to build up my endurance. I'll also just have to get lucky and have a "good day" that day, plus schedule a lot of breaks during the day, which is not quite typical for a bride, but what I'll need to do.

Onto the next:

SYMPTOMS

Of course, I look back, and I'm so happy for all progress I've made. But I still tend to disappoint myself with my limitations and my remaining symptoms.

Headache--Migraines occur an average of 2-3 days per week. The tryptans help, but only at the higher dose, which makes me drowsy.

My constant headache is still present. It worsens throughout the day. I believe it may be a tension headache due to muscle atrophy and spasm in my neck and shoulders. I try to make it to the massage therapist. I also exercise at the gym now and am really trying to strengthen everything. My head feels heavy, but after wearing a collar for so long, I'm sure those muscles are very weak. It's a slow rebuilding process to try to decrease the tension headaches. (I've never found a physical therapist that was capable of treating me in any useful way, due to the complications related to all of my conditions, so I just manage as best as I can.)

Fatigue--sucks. But I've been working really hard to fight it. Exercise helps (I joined the gym again.) Just getting dressed most days, doing activities around the house, and trying to get out of the house helps build up your stamina, when you don't overdo it. That line is so easy to cross, it's scary. I'm also taking Provigil. It's crazy expensive, so I only take half the prescribed dose, and I divide that dose during the day, because it seems to wear off. I may need to raise my dose though. I have zero caffeine intake, for multiple reasons. I'm working on building up my energy. I get enough sleep, so I should be able to make it through a day. I'm just experimenting with increasing my salt and fluid intake even more, which seems to be helping with POTS/fatigue. Often, other symptoms also limit me, like...

Body pain--joints and muscles. My muscles sometimes ache for no reason. My joints always, always, always hurt. Whichever joints are being used will start to hurt. If I lean on my wrists, they will be so sore. If I walk or stand, my knees will hurt the most, but my spine will hurt, too. I've had just about any body part randomly become almost unusable for stupid reasons, like driving. Random muscles or tendons seem to seize up when I use them (just like my neck does--always). I have shin splints now, so those hurt whenever I walk around or stand still. My feet hurt like heck after I am on them for about an hour, no matter what type of footwear I have. So after a longer period of time, they hurt a lot worse. I also began having jaw pain when I eat anything too crunchy (like raw carrots). These symptoms are ALL Ehlers Danlos symptoms.

POTS symptoms--improved since surgery, but still difficult. I basically never pass out anymore. I also refuse to use a wheelchair anymore, but will on occasion use a "cane seat," which is just a little portable seat, so you don't have to stand in one place. A recent heat wave gave me a POTS setback. I can't be anywhere near heat, or I become almost comatose. And when I say heat, I mean when the house temperature is set at 79 degrees instead of 73 degrees. I don't dare to go outside when it's too hot. Unfortunately, I am that heat sensitive. It makes the difference between a day sprawled out on the couch chugging water and salt, trying to raise my bp, while being basically incoherent, and a day where I can walk all around the house and do laundry, get dressed, shower, etc., with very little rest.

I have plenty of other fascinating symptoms to discuss, but that seems like the major ones for now.

So, my favorite feature of my blog has become:

A Day in the Life

So I'll bring it back now, to show where I'm at.

People see me for a snapshot of time. Time when I'm dressed, perhaps bathed, might even have makeup to cover an outbreak of acne. It's also usually a time when I smile, and pretend I don't feel how I'm feeling. I put things in a positive light, because I've been told a million times to focus on the positive. Apparently positive "energy" is magic. I do recognize my progress, which I couldn't be more grateful for, after how long I've waited for it (first surgery 2002). But people don't ask what I really go through from day to day too often, because that's usually not what they want to hear when they ask "How's it going?"

But here, I'll try to explain an "average" day. Which is quite difficult, if you think about the difference between a good day and a bad day. But I'll just talk about the past week, to make it easy.
Basically, I wake up around 10:30.
I prepare and eat breakfast and take pills.

I prepare and eat lunch around 1:30 and take pills.
I prepare and eat dinner around 5:30 and take pills.
Around 7:00, I either get dressed, or shower and get dressed.
Then, I can begin my day.
I can go to the store, meet up with a friend, go to the gym, clean up around the house, do laundry, etc.
Too bad I have to get ready for bed by 11:00, even though I'm not tired.

I know this begs the question: what do I do all day? Unfortunately, this question always feels like an accusation of laziness. But to satisfy curiosity, I'll try to answer. Due to jaw pain and dysphagia, my meals take a lot of time. (Seriously, an hour each.) I also have to keep my body reclined for much of the early part of the day, due to POTS. I'm still working on finding energy earlier in the day, whether it comes from salt, Provigil, or something else. But lethargy is another reason my day takes so long to kick into gear. Perhaps part of it is a lack of motivation, because I don't have too many things on the schedule right now, but I do usually have a to-do list, with things that I really want to get done.

This isn't to say that I don't ever schedule activities in the afternoon (although I don't in the mornings). And I need to get used to this schedule, because it's the only time I'll be able to work. But when I do go out in the afternoon, I have a hard time getting through anything. Plus, my body pays for it later.

Another part of it seems to be that I seem to zone out a lot during the day. I blame it on a lack of oxygen to the brain. It's like the world moves in slow motion for me. The little on-off switch in my brain is flipped off all day. And on a good day, it gets flipped back on by 7:00 PM.

FUTURE
So, my life is in a transitional stage this summer, and I'm definitely thinking about everything that is going to change. For one thing, on the day of my marriage, I will no longer qualify for disability. I will also be switching to Wisconsin state employee insurance. So, there's a lot to think about and plan for.

The biggest thing left for me to figure out is that I need to start working again. First, I need to replace the disability income with my own income. Then, I need to make additional income to help in my new household. I have to help support myself, and with my medical needs, that costs a lot. But I can't take on too much, or I will overwhelm my body. But I'll be in a new town, so finding new piano students, enough to make the needed money, but not more than my body can handle, will be challenging. And it's always difficult starting a new business from scratch.

I'll try to post again soon...

Progress

It seems that I've let quite a bit of time get away from me. However, I'm glad to say that a lot of progress has been made in this time. This month is my sixth month after surgery.

I had another week of severe bradycardia, but this time, there was a clear cause: we had just raised my dose of Lithium. So, it is now clear that Lithium has been causing my bradycardia all along, including in the time right after surgery. I quickly weaned off of Lithium after this discovery, because bradycardia is very dangerous and uncomfortable. (I should have gone to the E.R., but chose to avoid it; a risky choice.) My heart rate has been much more regular since then, and never ever lower than 70 bpm. This gives me much more "conscious" time.

Just this past week, I ran out of Topamax and wasn't able to get it refilled for 7 entire days. I had a migraine every one of those days. Sunday was the worst of it. I attended part of my brother's college graduation, but at high cost. For a few hours, I labeled my pain at a 15. I couldn't help but scream. On Monday, I was able to obtain two bottles of Topamax. But over the weekend, the answering service could do nothing for me. I just barely avoided the E.R., only because I hate it so much.

Onto the good news.......

I haven't used my wheelchair or my walker in 2011. I'm gradually driving more. I'm taking a Spanish class at community college, which I attend independently. I'm trying to fit in adequate exercise. Overall, my pain has decreased. I'm able to think clearly more of the time. I can sit up and walk around more of the time, with increased stamina.

I'm still fighting fatigue, but Provigil helps with this. I have good and bad POTS days, but there are more good ones, and the good ones are much better than they ever used to be. I usually have a bad POTS day when I've overdone it the day before. I never sleep through the night. Despite my one reliable nightly wakeup, I seem to require less sleep lately, often waking at 10 a.m. (about ten hours of sleep).

I am to the point that I believe I will look for part-time work in the fall. I still don't know how well I be six months from now or one year from now. But I fully expect to continue to improve. I am wondering what career path will be right for me. It's hard to make plans, when you don't know what to expect. But to even to be able to consider new plans is more than I ever expected. I am considering grad school. I'll be meeting with a career counselor at my alma mater in a couple weeks. It may be too soon, but I'm ready to get the ideas flowing!

Also, looking forward to my wedding in July. Plans are going well.

Thank you to everyone for your support!

Please keep my Chiari friends in your thoughts, as not everyone has reached a hopeful stage in their journey yet.