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.

Pace yourself

I had a chance to live a more normal life, so what did I do?
-I showered, instead of bathing.
-I baked cookies.
-I ran errands.
-I drove.
-I socialized.
-I lived a life.
-I made the most of it.

-I overdid it.

It's hard to pace yourself when your body suddenly isn't telling you to stop.

But now, I'm at the bottom again, and it's a long, slow climb back up. I hope to deal with it better next time I get out. I hope I've learned. I also hope it's a shorter climb and a longer peak next time.

It's so hard being back down at the bottom, unable to get off the couch. Barely able to walk. Trouble catching my breath. Pain, extreme fatigue, overwhelming feeling of sickness. Such a long way to fall, and so suddenly. How will I ever climb back out of this hole again?

Getting Carried Away...

Things that are better, at least some days:
-waking up at 11:00, naturally, instead of noon
-able to wake up at 10:00 to an alarm one day, with no consequences, no nap
-able to take a shower instead of a bath
-able to shower more frequently
-able to have more active and upright time, on some days

The thing is, good days and bad days are a part of Chiari. They are a part of POTS. Good days are not unheard of. This doesn't necessarily mean anything. So I have to be careful not to get carried away, right? Keeping that in mind...here I go anyway:

I'm feeling like there are possibilities for my future. I'm considering looking into a new career. Am I crazy? I have no idea how plausible this is. I seriously would need to get SOOOO much better. I have no idea how much better it's possible for me to get, or if it will last. But maybe...

Resilience

Hope is a scary thing.
I wish I could stop myself.
Cause I can never handle the let downs
Not another let down
Not this time.
I've done everything.
I've given up everything.
I lost everything and rebuilt.
Then I did it again.
And again.
I've waited.
I've endured.
I continued waiting.
I've been shut down so many times.
I've gone through more pain than I ever imagined I could.
But I did not give up.
I kept going.
I came very close.
I hit rock bottom.
Then I hit even lower.
I waited and endured and withstood even more pain.
This time should be my time.
If there is any way for me, this is it.
There's nothing else to try.
This has to be it.
It must be.
I don't have much left in me.
I don't know how to give much more.
It hurts too much.
I just don't think I could give any more.
But that's never really true, is it?
As much as it hurts, I always find a way.
I persist.
I push forward with might.
I always find new ways to forge ahead.
So it's never really over.
There's no last chance.
As long as I can always find a way to keep trying.
------------------------------------------------------------------

Sorry for any typos and the unorganized nature. This is just stream-of-consciousness. I don't really know anything about poetry. Just wanted to get some thoughts out.

I dedicate this to all of my Chiari friends that also persist in a daily battle. It takes strength and resilience. I don't know how some of them do it with a smile on their faces! I don't necessarily stay positive. I just don't give up. And that will still get you from one day to the next, which is all you can do sometimes.

In reality, I know that many people have this surgery and get better. Other people have this surgery and don't get better. And others have this surgery, get better, and then get worse again. There's still not enough research. It's still so early. There's no explanation for the outcomes. The doctors are doing their very best to help us with limited information. And I am very grateful that there are doctors out there willing to try.

At the very least, I have recovered from the side effects of the surgery at this point (no more crazy autonomic instability--back to normal POTS). Surgical pain is mostly gone--still some sharp pains in my head at times. My skull has healed in a strange way--it's got a pretty large protrusion that is very sore and sensitive. My scalp still has very strange sensation (hypersensitive and partially numb at the same time). My hair is growing back at the usual rate.

But I also feel that the number of good days is increasing. It's nothing dramatic. If I'm improving, it's at a very slow rate. I would call it incremental improvements. But that's good enough for me. I wish I could see into the future to know how much better I will get and how long it will take. Then I could plan better. I could decide if it makes sense to choose a new career and go get the necessary training. Will I ever be able to work a real job? How many hours a day? Would I be healthy enough to work reliable hours? I'd like to work. I'd like to contribute financially to the family, and feel like I have a purpose.

I will save the more long term question of having a family for another day...

For now, I will just keep going. Living every day as best as I can. Trying to be upright and active without overdoing it. Keeping track of any improvements without expecting too much of myself and my body. Being grateful for wherever I'm at in my long recovery process, and trying to be patient to find out where it will end up. Trying not to get carried away and be accepting of wherever I may land.

Never giving up. I must remember that recovery is not a linear process. There are always steps forwards and backwards. After the busy holidays, I should expect some bad days to follow. But I must remember not to be discouraged by the bad days, even if they last for a few weeks. The good days will return, and ultimately, recovery will progress forward.

Of course, I must also keep in mind that we have no idea how far this recovery will progress (thus, not getting carried away).

Okay, I've said way too much, which tends to happen this late at night. I will probably not be waking at 11:00 tomorrow, as it is 3:00 here. My body is used to 11 hours. A bit less tonight I guess. Just got carried away again.

Finally, A Response.

Xray of my new fusion

MRI showing the suspicious fluid which glows bright white

So, I finally heard from my doctor, and I did get some surprising news.

He looked at the scans. He said that the fluid in the picture is not spinal fluid! I don't have a leak. It is actually chemicals that were put in during the fusion. And my fusion looks exactly how it should look at this point in my recovery! So, everything is healing well. That part is a relief.

As far as my return of symptoms, my surgeon believes that they are being caused by my cardiovascular problems. He believes that I will need a pacemaker to stabilize my heart rate and blood pressure. He believes this would alleviate many of my symptoms.

I also talked to my local cardiologist today, since my 30 day event monitor is complete. He is referring me to an electrophysiologist. He also suggested that I may benefit from a new type of pacemaker.

Coincidentally, my POTS doctor, Dr. Grubb, installed the first in this new generation of pacemakers this past June. It is particularly advanced, and especially able to help stabilize both heart rate and blood pressure. [Correction: This is a false statement, which will be amended in the next blog entry.]

Here's a brief article describing this pacemaker: http://utnews.utoledo.edu/index.php/06_03_2010/patient-travels-from-dc-to-receive-new-generation-pacemaker-from-utmc-surgeon

My next step will be to contact a local electrophysiologist and to schedule a consultation with Dr. Grubb. I understand, of course, that there will be another waiting period.

Wow, I sure get to practice patience a lot.

In the meantime, I'm going to try to keep a good record of my heart rate and blood pressure. I find my current situation to be quite difficult to describe. Also, it's complicated by the multiple medications that are helping to raise my blood pressure, which stabilizes my heart rate, to some extent. It's hard to know how severe my situation would be without these medications.

That's all for now. It's a relief to know it's not a leak. But I guess the saga is never really over, is it? I don't want a pacemaker. I don't want heart surgery. But I would do pretty much anything to feel better at this point, obviously.