Monday, December 27, 2010

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?

Wednesday, December 22, 2010

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.
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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.

Wednesday, November 10, 2010

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.

Monday, October 25, 2010

Here's an email I sent to my surgeon that summarizes my post-operative struggles:



I had the MRI and xrays done this week that Dr. B requested based on my post-surgical cardiological problems. I wanted to make sure that Dr. B has a full picture of my post-op symptomatology to consider, along with the images, when they arrive.

My cranio-cervical fusion revision was August 19. My time in the hospital went smoothly. Immediately after surgery, we noticed a complete improvement in my pupillary reflexes as well as my swallowing. I flew home on August 27. I experienced dramatic symptom relief in the following days. I experienced relief of all of my POTS symptoms, my headache, and my fatigue. My balance was very steady, and my "brain fog" was gone. I woke up every day feeling energized and light. I built up my pace and endurance on daily walks very quickly.

September 7 was the first day I noticed a change. When I went from sitting to standing, my vision would black out. This caused me to check my blood pressure. It was 90/70, which was quite a bit lower than it had been when I was feeling good (around 120/80). I also felt a headache this day. In the following days, I had low blood pressure (as low as 80/40), vision blackouts, legs giving out, palpitations, nausea, chills, and fatigue return.

On October 5th, I went for a walk with my heart rate monitor on, and noticed my pulse get very low (HR=38). This happened several times in the following days, in conjunction with reduced consciousness. During a reduced consciousness time, which can last for several hours, or even much of the day, I experience limpness, lethargy, reduced awareness, reduced alertness; and trouble focusing, understanding, and producing words.

In addition, my dysphagia, which had gone away, has started to return, which choking on water and pills.

My pupils only work sometimes.

My baseline headache has gone and returned.

My fatigue and flu-like feeling have gone and returned.

My autonomic dysfunction has gone and returned, however, it used to be strictly POTS. Now, my blood pressure can be too high or too low; my heart rate can be too high or too low. So, my POTS doctor doesn't know how to treat me, and my cardiologist is considering a pacemaker, pending the results of my 30-day event monitor. I have marked heart rate lability and blood pressure lability. In addition, I experience shortness of breath, and my lips are often blue.

I expect this recovery to be a long one, so I don't mean to complain. But I did want to alert you to the seemingly complete elimination of my symptoms in my early recovery, followed by the return and even worsening of many symptoms right now. It's hard to understand and hard to explain what has happened.

I cannot remember anything happening to my head or neck that could have caused any damage.

I am continuing with my Forteo shots at this time, and to the touch, it feels that my skull has filled in with bone.

Thank you for considering my situation.

Monday, October 11, 2010

Bradycardia, Reduced Consciousness

I know. I'm a delinquent blogger. It's just hard to know what to say when things are going wrong and not looking up. So, I'll simply report the facts.

I've been having a new symptom, and some more worsening symptoms. I've had some spells of prolonged bradycardia, as low as 38 beats per minute. I haven't lost consciousness. But I have had many different levels of reduced consciousness, and it feels like I'm never fully awake anymore. I am often in this state at least 6 hours a day: reduced awareness, reduced alertness, unblinking, limp, lethargic, difficult to rouse. I've reported this symptoms to my POTS specialist and my neurosurgeon. I'm now on a 30-day holter monitor to try to catch the bradycardia episodes (of course, the lowest I've recorded is 46, but we're getting closer). My heart rate is also hyperreactive to anything I do, but the monitor is really able to catch that. The most it can record is 2 minutes and 15 seconds a day. I would need more of a 24-hour holter for that type of problem.

The POTS specialist says that this is not related to POTS. Tachycardia is typical of POTS. Bradycardia is not. So this is a new and unexplained symptom.

My surgeon also ordered scans of my cervical spine that we're arranging to have set up. I guess he's worried about the bradycardia episodes being related to the fusion.

I also need to have my Lithium levels tested, although my dosage has been constant for a long time.

I still haven't actually had an appointment with a doctor about this new problem.

During the bradycardia episodes, and actually most of the time, my state of consciousness has been reduced. I've been really out of it. Staring. Limp. Weak. Tired. Short of breath. Not very reactive. Can't think much (Reduced mental status).

Besides all of this, essentially every symptom I've ever had has returned or gotten worse.

Sunday 9/26
Fatigue/Lethargy
Pain: 3, Achy
Walk: 30 minutes, up and around the hill

Monday 9/27
Fatigue/Lethargy
Aches/Pain after walk
Chills at night
Exercise: 27 minute walk, 20 minute bike

Tuesday 9/28
grocery trip: bad, caused a spell of reduced consciousness
Fatigue/Lethargy
Aches
Chills
Headache: brain, especially at the back--definitely Migraine
30 minute walk w/ ankle weights

Wednesday 9/29
Fatigue/Lethargy
No appetite
31 minute walk, 25 minute bike

Thursday 9/30
Fatigue
Achy
No appetite
Migraine
Exercise video: 40 minutes, Heart rate: 170

Friday 10/1
saw a movie in the theater
GI distress

Saturday 10/2
Collapsed when climbing stairs
Unable to move all day: restricted to bed

Sunday 10/3
bike 15 minutes

Monday 10/4
bike 20 minutes

Tuesday 10/5
Migraine
Nausea
Fatigue
Muscle aches
Bruised feeling all over
Joint pain
Reduced appetite
22 minute walk

Reduced consciousness spell: weak, tired, out of it, short of breath, palpitations
120/76-HR 48
126/81-HR 47
134/88-HR 44
134/83-HR 44
138/90-HR 39
136/89-HR 42
134/81-HR 42
Lasted at least 3 hours

Wednesday 10/6
Recumbent cross trainer-10 minutes
Reduced consciousness spell
135/92-HR 39
145/94-HR 40

Thursday 10/7
after breakfast, resting
feeling "normal"
102/67-HR 81
102/64-HR 88

Later, out of breath just talking
108/72-HR 53

Friday 10/8
Begin 30-day Event Monitor

Rest after exercise: HR 52

Saturday 10/9
Decreased consciousness most of the day, HR low was 46

Sunday 10/10
Decreased awareness, decreased alertness, weak, tired, HR low was 48

Monday 10/11
Zoning out all day. Low so far around 52. Will probably get lower later, as it usually does. It seems to trade off between low blood pressure and low pulse, so I'm always symptomatic, but always just barely conscious.

It seems like I should see a doctor, but the cardiologist just gave me this monitor. Don't know who I should see.

Sunday, September 26, 2010

Some bad days, Days in Bed, A Plateau

Friday 9/17
Switch to hypomanic
Awoke with heart pounding
Sharp pains in right rod
Nausea
Chills
Spell: decreased conscioussness

Saturday 9/18
Nausea
Hot/Cold
Body aches
Sensitivity
Fatigue
Heart pounding
Lethargy
Chest pains
Couldn't get out of bed all day
Walk: 10 minutes- excruciating

Sunday 9/19
Fatigue early
Better energy
Less pain
Reduced consciousness spell
Heart feeling better

Monday 9/20
Lethargy improved
Heart improved
Reduced consciousness spell
Low blood pressure all day
Nausea
Abdominal pain
Chills
Low pain level: 2-3
Bike: 20 minutes HR 120's

Tuesday 9/21
Flu-like symptoms
Hot/cold
Lethargy
Nausea
No appetite
Migraine kept me up at night
Exercise video: 20 minutes- HR 120's

Wednesday 9/22
No appetite
Flu-like symptoms
Walk: 20 minutes

Thursday 9/23
Nausea
Hot/cold
Headache: Top of head/forehead

Friday 9/24
Migraine woke me from sleep
Flu-like symptoms
Walk: 34 minutes- HR 130's/140's

Saturday 9/25
Sick
Pain
Headache
Back left upper skull pain/throbbing- 8
Bed day
Walk: 5 minutes- excruciating

Tuesday, September 14, 2010

Four Weeks Post-op

My recovery is progressing and improving, but not in a linear fashion, of course. Recovery is always "2 steps forward, 1 step back." It's very frustrating, but overall, I can tell that even with multiple setbacks and plenty of symptomatic days, I'm still getting better overall.

Friday 9/10
Pupils functioning fully.
POTS symptoms much better.
Exercise tolerance improved.
Intractable headache
Walk: 2 laps
Walk: 2 blocks

Saturday 9/11
Walk around golf course: 23 minutes
Active day
Headache

Sunday 9/12
Walk: 2 blocks
Active all day
Headache
Pain, neck and head: 6

Monday 9/13
No activity all day
Bike: 8 minutes
Headache
Lethargy
Nausea

Tuesday 9/14
Headache
Walk: 18 minutes
Headache worsened: 7
Bike: 6 minutes

Wednesday 9/15
Physical therapy
Bike: 12 minutes

Thursday 9/16
Grocery trip
Heart palpitations/pounding
Nausea
Walk: 30 minutes

Thursday, September 9, 2010

Three Weeks Post-Op

For some reason, by the time we got home from the hospital, it looked like my recovery was going to be one of those rare quick and dramatic recoveries; a sharp contrast to the long and drawn out recoveries that I'm used to.

For ten days, my body surprised me. Besides the surgical pain and the post-surgical "quirks," I was symptom-free. Really. No headache (again, besides localized surgical pain). No nausea, no facial pain, no POTS symptoms. I was amazed.

I certainly wasn't expecting this when it happened. It seemed too good to be true. I tried not to get my hopes up. But it really seemed the the surgery had very quickly solved all of my major complaints.

Then, Tuesday happened. Blackouts, collapsing, low blood pressure, pupils not working, tachycardia, palpitations, arrhythmias, the old headache, body aches. They all came back, and have persisted.

Now, I never expected to be symptom free, at three weeks out, or ever, really. But for ten days, I was. It's hard not to wonder why I was doing so well.

Especially something like pupillary constriction. That was immediate after surgery. It was perfect. And now, it's sluggish and incomplete. What changed to make this happen, along with other symptoms coming back so abruptly? My blood pressure hadn't been noticeably low since surgery. Now, it seems to be constantly low.

However, I know to expect a long recovery. I expected not to see symptom relief for a long time. Twelve months is a good guess for recovery time from symptoms for this operation. POTS recovery can take longer than that, and it is not expected to be complete.

But for those ten days...I had such a feeling of well-being. It felt like I had a new body. I just wonder what that was about...

------------------------------------------------------------------------------------

I had my first physical therapy appointment on Wednesday.
The script from Dr. B only had one instruction: "Optimize neck ROM" (range of motion).
So, when I went to my appointment, that's what we started doing. Stretching. I left with quite a headache. I wrote to my nurse, to find out if this was okay. She said that no stretching is to be done. Just massage, warm compress, and later, ultrasound, and TENS. Quite a contradiction to the script. Hopefully, we'll get this straightened out.
I also hope I can find a physical therapist that can give a good massage. He seemed to be scared to touch me. I need to get to a massage therapist, and fast!

------------------------------------------------------------------------------------

I really wish those ten days hadn't happened. They got my hopes up and left me disappointed with my current condition. I'm actually having a good recovery. I'm still in pain (between 4 and 7). I have a lot of trouble finding a way to rest my head on a pillow at night. But I'm getting out for daily walks. I'm able to get in and out of bed easily. I still have a lot of fluid. Once that is absorbed, the pain should decrease. It's still much better than I expected. I know it's good. I'm working on readjusting my expectations. I knew it was too good to be true. That's why I didn't want to admit just how well I was doing. I didn't want to admit that my headache was gone. But I was really ecstatic. Now, I've actually been crying for three days straight. It doesn't make sense, because I know how lucky I am, still. I guess I just really got my hopes up that things were really going to stay so drastically better so early on. I wish I could stop crying. I know it's ridiculous. Oh well, I will adjust my expectations again, in time. I've done that enough times in my life; I'm sure I can do it again.

Tuesday, September 7, 2010

19 days after surgery

Day 14
Day 19


I've had some strange "side effects" from surgery that I expect to wear off after some time. Some have already begun to wear off.

First, my voice was very weak, strained, and hoarse after surgery. Luckily, this one has already improved dramatically.

Also, my jaw cracks on the right side when on open it. This is also happening less.

My right ear has been behaving very strangely. At first, it would vibrate and buzz at certain sounds. Now, it just echoes my voice and amplifies sound sometimes. Getting better.

There is a strange clicking sound and feeling in the back left side of my head with the impact of walking. I wasn't sure if this would improve, but during today's walk, for the first time, the clicking decreased in frequency.

The back of my head is still full of fluid. It is one large pocket of fluid. I have trouble resting my head at all, because of the pressure of the fluid. Still waiting for the fluid to be absorbed and the pressure to go down.

In the time from pre-surgical testing to the time I got my stitches removed, I lost 10 pounds. That wouldn't be hard to gain back, but I'm hoping to gain back more muscle than fat, so it could take some time.

On Saturday, September 4th, I took my first shower. Washing my hair was near impossible. My head and scalp are so sensitive to the touch. Just moving my hair around is painful at this point. Unfortunately, as I did wash my hair, I noticed it falling out in chunks. It was distressing. Luckily, I wasn't left with nothing. This was apparently an effect of the eight hours of anesthesia. Hopefully, I won't lose the rest of it! It seems to come out at the lightest touch.

Sunday and Monday, I began having new, sudden, sharp pains in my head. I'm sure that's just part of the healing process.

Today, I had a bit of a rough time. My vision has blacked out three times. I collapsed once. My blood pressure has been low today, around 90/70. I've also had palpitations, tachycardia, and the feeling of a very reactive heart.

I'm also feeling very achy today and my joints hurt more than they have been.

I've been feeling emotional today, too. Knowing that the POTS recovery will take a long time, and certainly wasn't "cured" by the surgery. Everything in its own time.

Tuesday, August 31, 2010

Recovering




Well, it's been 13 days since surgery. I would say that this fusion surgery didn't hit me nearly as bad as the first fusion did. I prepared for the worst, again, and this isn't it. That being said, I'm still in quite a lot of pain. The new rods feel terrible, but that's normal. It's quite a weird feeling, having my old rods gone.

There's still a fair amount of swelling. I actually have what feels like pockets of fluid on either side of the back of my head. It's very strange to touch. So, I'm still icing that area a few times a day to try to reduce the swelling.

Also, my muscles are in extreme spasm. The muscle relaxants are helpful, but some intensive massage therapy will be necessary for these muscles to really let go. I use a heating pad on my neck and shoulders to help relax the muscles. Massage therapy and physical therapy will start next week.

Tomorrow, I get my stitches removed. Yay! On Saturday, I'm allowed to wash my hair! That's 16 days after surgery that I will finally be allowed to wash what's left of my hair. Luckily, my incision is closing up really well.

While on my current pain regimen, my base level of pain is about a 6. It's tolerable. Nothing like I expected based on my first fusion.

The improvements I've seen so far:
*Swallowing
*Pupil constriction
*I can now stand with my eyes closed without falling over!

The single most important factor that has gotten me this far in my recovery is the amount of support from family and friends during this challenging time. I have never felt alone. I know how lucky I am to have so many supporters to help me through.

Sunday, August 15, 2010

Making the Switch

I'll be switching over to Caring Bridge for the coming weeks, for post-surgical updates.

http://www.caringbridge.org/visit/carolynrichardson

Thursday, August 12, 2010

How are you feeling about your upcoming surgery?

Am I nervous? No. Not really. I know what to expect. The only thing to be nervous about is that my bones fuse the way they are supposed to this time. What I feel is much more a feeling of dread. I dread waking up after surgery. I dread the time in the hospital and all that comes with a major operation. Mostly, I dread month after month, alone in my bed, wondering if I'm going to feel that horrible forever...seeing no signs of improvement, wondering if I'll ever get any better. I dread that darkness returning, that hopelessness that accompanies unending pain and sickness, when things are supposed to be finally turning around. I dread the dark days.

"At least you know, one week from now, it will all be over with." No. One week from now, it begins again.

Wednesday, August 11, 2010

The end of life as we know it

So, in four days, we're leaving for our trip. If all goes according to plan (meaning, I get approved for surgery based on my traction results), I will go through some very traumatic times in New York. I am really worried about pain management after surgery. In the past, this has been a major concern, because of my allergic reactions to everything. I'm also worried about the usual issue of getting my GI system working again after surgery. It's an even bigger concern this time, because this will be the longest surgery I've ever had (8+ hours).

And, being a female, with very thin hair, I will be sad to lose most of it for this operation. My hair grows thickest in the area where it will be shaved. The area that I keep is actually quite sparse, so I really won't be left with much. I wouldn't care too much, except that I am planning a wedding, and I know it won't really have time to grow back.

Anyway, back to things that actually matter. On Tuesday, I will have Invasive Cervical Traction. This is a surgical procedure. I will be awakened in the operating room, so I can be involved in providing subjective information about the feel of the positioning of the skull. They will also be taking images in the operating room, so they can take measurements to determine precisely the right location for my skull.

If all goes well, I will be approved for a revision of my cranio-cervical fusion. I will be having my existing hardware removed. The bolts will have to be removed from my skull, and the screws will have to be removed from my spine. The titanium rods will come out. Next, they will begin to reconstruct a new fusion, in a new location, with all new materials. The titanium is a stronger alloy than was previously used. They will also include cadaver fibula bone and bone powder. This will encourage my bones to grow around the new materials to form a bony fusion. They will hold it all together with a wire. The goal is for a more solid fusion to be formed and for that fusion to be in an optimal location.

I am mostly just dreading recovery at this point. It's all I can really think about. With POTS (dysautonomia), anesthesia is a trigger that can worsen your symptoms, and it's really hard to come back from. So even though they say there is an expected 2 month recovery, that's not really how it works with POTS. I would say that I still haven't recovered from my tethered cord surgery 2 years ago, in terms of my autonomic dysfunction.

Hopefully, this surgery will be able to alleviate some autonomic symptoms, making the POTS recovery easier than it has been in the past. Even so, it wouldn't be strange to spend the next year of my life working on regaining my ability to be upright.

The thing is, I'm not starting out at the top. I'm actually quite ill going in to surgery, so the time of rebuilding may be very long. One to two years would not be unusual for my autonomic system to require to adjust and allow me to recover fully.

With POTS recovery, you have to walk a very fine line of working enough to start rebuilding your cardiovascular system and working too much. Even working a few minutes too many may cause you to spend days unable to get out of bed. I know because I've already been through all of this before. I've already gotten myself from a mostly bedridden state, similar to this, to a place where I could work out at a gym and drive and work part time. The problem was, I was still restricted to bed much of the time. That's because I was limited by my sub-optimal fusion in my head. This time, there should be no restrictions on my recovery.

However, I still no better than to set really high expectations for myself. I don't expect to live pain free. But I hope that my head pain level is significantly decreased. I don't know if my fatigue will improve. If it doesn't, I can always try treating it again with Narcolepsy meds. I really hope my POTS will be improved, with a combination of surgery, physical therapy, and hard work. I believe my nausea and swallowing problems are the most likely to go away. I don't know if my overall body aches could be improved. I assume joint pain is related to EDS and won't be improved. So, I'm not sure what these means for quality of life. I there was a quality of life scale at TCI. Right now I'm around 45/100. They say you can hope to move up by 20-30 after surgery. My quality of life could improve to 75/100. Is that too much to hope for? I'm so scared to be let down again by another surgery. I'm even more scared to give up another year of my life just to be let down again by another failed surgery. But I must believe that there's a chance, or I wouldn't be doing this. I'd have to be crazy to try this again if I didn't believe that it was going to help me.

But it will all start at the bottom. First the pain. Pure survival. Next, the physical therapy and massage therapy to begin moving again. Then, all the will-power I've got to fight the exhaustion and get my body working again.

These really are my last few days of the status quo. Everything will change.

I will be fighting every day to endure the immense pain caused by the surgery. No one can say how severe it will be, how hard it will be to manage, or how long it will last.

I'm as ready as I'll ever be.

Surgical updates will be posted at my caring bridge page, not here on my blog. That will allow family and friends to receive e-mail updates to keep informed.

http://www.caringbridge.org/visit/carolynrichardson

Thursday, July 8, 2010

Big News

I have a surgery date. I am booked for Invasive Cervical Traction 8/17/10. If the traction test is positive for instability, they will go through with Cranio-Cervical Fusion Revision on 8/19/10.
My pre-surgical testing is 8/16/10. So, we will be flying into New York on 8/15/10. It is uncertain how long I will stay in New York after surgery at this time.

That's the schedule.

There's a lot of pre-operative planning to be done. All of the paperwork is done online now, so I can gradually chip away at that over time. I need to get a pre-operative physical with my general practitioner and I need cardiac approval with an echo-cardiogram with my cardiologist. I'm also supposed to have at least a few weeks of physical therapy. We'll see how much there is time for.

Plenty of preparation.

In terms of my feelings, I completely understand that this is good news. The best news I've gotten in a long, long, long, long time. My stagnant life will finally move forward. Something will change. In the big picture, this is a good thing, because my quality of life is likely to improve...eventually. When I first got the news, I was ecstatic. However, my enthusiasm was short-lived.

Please don't accuse me of being pessimistic here, because we all know that would be the worst thing in the world. I'm just human. I'm facing the scariest surgery I've had so far. I've been through a similar operation in the past, so I know approximately what to expect...torture, a living nightmare. Remember, I'm allergic to all of those wonderful pain meds that ease the process for most. And the allergy meds don't seem to help me. So I feel the full reality of what they do to my head unarmed. It's a battle.

So I know I should be the happiest girl in the world right now. But I'm scared and anxious. It's making me irritable about the whole thing. I don't like to think about surgery or hear about it or talk about it or plan for it. But I understand that I have no choice. I just don't want to be happy about it right now. I'm so glad that the time has come to get it over with. But am I really happy about giving up my mobility for the next year of my life? About facing pain levels above an 8 possibly for months on end, like last time? About being restricted to bed for several months, maybe more? After the fusion surgery, the never-ending pain pushed me to suicidality after 5 months. It's hard to be happy when facing this again.

Now, my life has been so restricted for so long. With many symptoms and much pain. And I'm about to tell the doctors to go ahead and make it worse?

By the way, if a patient does not have POTS, the recovery from this surgery is expected to be about 2 months. Unfortunately, I have POTS, which is a chronic illness. It may become "easier to manage" with this surgery, but no one expects it to go away. Any surgery causes a POTS relapse: the more invasive the surgery, the worse the relapse. This is an 8+ hour reconstructive cranio-spinal surgery. They will remove my current hardware and replace it with all new hardware and bone, completely rebuilding my cranio-cervical junction. This essentially "resets" the nervous system. That's as invasive as it gets for POTS.

No risk, no reward. Right?

So, I completely understand that this is wonderful news. I just don't feel it. The long-awaited surgery has just become very real.

Friday, June 25, 2010

Trip to New York June 18

June 18 was the big day. It was officially 2 years after my tethered cord surgery and my previous invasive cervical traction test.

Gustavo and I went on this trip. We stayed at the Variety House.

In the early morning of the 18th, I went to get new imaging done. 2 MRIs, 2 CTs, and several x-rays. Of note, we did a flexion and extension x-ray. I was surprised to find that during the extension x-ray, I was able to extend my head back all the way until it was touching my upper back, despite having an intact skull to C-4 cranio-cervical fusion in place. That's EDS for you. Super flexible!

Anyway, my appointment at The Chiari Institute was scheduled for 3:00, so of course, we went in at 6:00. We talked with Andrea, a very nice nurse practitioner for quite a while. We discussed all of my symptoms and my current condition. After that, we waited a bit more. Then, we finally went in to see Dr. B. It was his last appointment on a Friday evening, so he was very relaxed and making jokes. We got to meet with him in his main office instead of an exam room. During the visit, I did not feel pressure to prove myself to him at any time. Instead, he just explained what the next steps would be for me, in detail.

1. Need a good DEXA scan. Good means borderline normal, or a T-score at or above -1.0.

2. Need to continue treatment for bones now and after surgery.

3. Invasive Cervical Traction needs to test positive for instability.

4. Cranio-Cervical Fusion Revision will be performed.

Dr. B said that no bony fusion formed between the skull and C2, so the area has collapsed, due to osteopenia. That is the reason why the symptoms never got better, and have even gotten worse.

This is why it is so important to have strong, growing bones at the time of fusion.

Instead of one solid mass of bone and titanium, I have just naked rod connected to my bones. The area never filled in with bone.

The newest revision technique has been very successful at preventing this problem. It involves replacing 90% of my hardware. It also involves using a cadaver fibula in the shape of a V along with ground up cadaver bone, all tied together with titanium wire. This all encourages a bony fusion to form.

This surgery has been successful for many people and formed solid fusions for them.

It felt like a very successful visit, and I feel like there are not many roadblocks left on my way to surgery.

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Next, I went to my general practitioner this week. He listened to the update, and he immediately prescribed Forteo for me. Awesome. I started it on Monday! So I'm back in the bone-building game.

He also ordered a new DEXA scan to be done, which I had done yesterday. We got the results today. Unfortunately, the results were not what we were hoping for (-1.5 and -1.7). I believe very strongly that the difference has to do with slight differences between machines. My former endocrinologist told me that every single DEXA machine reads differently from every other machine, so you should try to stick with the same machine. Also, on the DEXA results, it says that changes of <5% are not statistically significant on repeat scans.

So, my current plan is to continue DEXA treatment for 2-3 more months, and then have a repeat DEXA on one of the other two machines that I have been using for treatment, whichever one I can get in to use. I truly hope that that makes the difference in the results that I need. When we're looking for such small changes, it seems like anything could make the difference. Hopefully, it really is just the change in machines.

The hard part will be convincing insurance to cover another DEXA this year. But it's so important, I would do whatever it takes to get another one this year. I can't put surgery off forever, not when I know how good it could be. This is just one more frustrating delay.

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My roommate at the Variety House was recovering from this exact surgery. And she was doing remarkably well. She felt so much better. She looked so good. She sat up by choice. Her post-surgical pain seemed minimal. She went into the city to see a show! Her success is my new inspiration to keep going until I have this surgery.

Saturday, May 15, 2010

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chiari I Malformation, Postural Orthostatic Tachycardia Syndrome (Autonomic Dysfunction), Ehlers Danlos Syndrome, Cranio-cervical instability/Functional cranial settling

2. I was diagnosed with it in the year: Chiari in 2002, the rest in 2003

3. But I had symptoms since: 1998-ish

4. The biggest adjustment I’ve had to make is: giving up on the idea of having a career; getting used to a drastic reduction in ALL activity

5. Most people assume: that if I look like everyone else, I must feel like everyone else. That if I put a smile on my face, then I’m doing just fine.

6. The hardest part about mornings is: Facing another day. Knowing it will feel like 10,000 days. Feeling like I weigh 10,000 pounds. Feeling worse than I did the night before. Feeling more tired than I did the night before. Feeling like my life currently holds such little meaning—why should I force my body out of bed just to watch TV all day?

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: My laptop…connection to civilization

9. The hardest part about nights are: Being all alone with my pain and my thoughts, and unable to sleep, over and over and over again.

10. Each day I take __34__ pills & vitamins (Plus fish oil and any as needed meds, like pain meds). (No comments, please)

11. Regarding alternative treatments I: generally stick to what a doctor recommends, with a couple recent exceptions. I believe in empirically-supported medicine. I love massage therapy!!!

12. If I had to choose between an invisible illness or visible I would choose: I think I’d prefer a visible illness, because then people would understand immediately that my smile does not come easily. It is a gift for them.

13. Regarding working and career: When I thought I was getting better, around 2007, I had a piano studio of 24 students. But it was really a ruse. I was living off of stimulants and narcotics. I couldn’t keep it up. My body started protesting with narcoleptic episodes. As soon as I slowed down on the meds, my ability to work slowed down, too. I’m now down to about 3 half-hour lessons/week. And even that is a challenge. I don’t even know if this is the career I want to stay with. It’s just the only career I thought I could pull off as I was going through college. I have no idea if or when I’ll be able to work more. And I have no idea what job I would have chosen without limitations, or if I'll ever find a different one.

14. People would be surprised to know: that I never have a moment that is symptom free or pain free. I cannot remember what it feels like to live without pain. Also, the severity of everyday fatigue.

15. The hardest thing to accept about my new reality has been: My lack of independence and loss of social life. They do go together.

16. Something I never thought I could do with my illness that I did was: Graduate from a 4-year college. At one point, I also got into really good physical shape. I hope to do that again when my body allows.

17. The commercials about my illness: n/a

18. Something I really miss doing since I was diagnosed is: Gymnastics, Exercising, Singing, Performing on stage in some way.

19. It was really hard to have to give up: Driving…I need to drive again for my sanity. I feel so confined.

20. A new hobby I have taken up since my diagnosis is: I started a support group, but then became physically incapable of running it. I read a lot of books, but that’s not new. I watch endless hours of tv, but I’m not proud of it. I guess I’ve learned to relax. I always used to be so busy and stressed in high school and younger.

21. If I could have one day of feeling normal again I would: spend it doing all of the things my fiancĂ© has always wanted to do with his partner, but can’t with me. He deserves that day of normalcy even more than I do. So it would be his choice. I think it would involve skipping and jumping and running (for me).

22. My illness has taught me: how to relax. How to listen to my body. How to revise my expectations for myself in life. How to accept myself as I am now.

23. Want to know a secret? One thing people say that gets under my skin is: if you just stay positive 24/7, you’ll be better off. That’s not necessarily true! Okay? We need to live in the real world, and we need to accept our circumstances as they are in order to cope with them. Not just pretend that everything is fine and put on a happy face. No one should have to pretend to be optimistic 100% of the time!

24. But I love it when people: Care, Listen, Learn about my messed up brain. Especially doctors.

25. My favorite motto, scripture, quote that gets me through tough times is: “A journey of a thousand miles begins with a single step.” –Lao Tzu. Because what can we really do, other than persevere.

26. When someone is diagnosed I’d like to tell them: Allow yourself to grieve, time and time again, over everything you lose to this illness. It’s the only way you will learn to accept your new self.

27. Something that has surprised me about living with an illness is: How ignorant the entire medical community is about all of these illnesses. The number of times and ways they have let me down.

28. The nicest thing someone did for me when I wasn’t feeling well was: Lay next to me, without touching me, when my skin was too sensitive to be touched. Just because my skin hurts, doesn’t mean I don’t want to be held, just that I can’t be.

29. I’m involved with Invisible Illness Week because: n/a

30. The fact that you read this list makes me feel: Heard.

Friday, May 14, 2010

A Day in the Life (with Chiari/POTS/EDS/Cranial Settling/Cranio-Cervical Instability)

I wake up around noon (please don’t express jealously--that's just mean). I immediately feel the aches and pains of the morning and the headache of the day, but it’s usually too soon to know how bad the day will be. At this point, I can only tell if it will be an easy or a difficult wake-up. Some mornings, I wake up feeling like I’ve actually slept. Most mornings, though, I wake up feeling the peak of lethargy. Either way, I drag my heavy body out of bed and head downstairs.

First, I eat a bowl of Grape Nuts on the couch. This is followed by my morning pills. I may or may not have a dramatic and prolonged choking spell on a pill, or even my water, for that matter. At this point, I am unable to move until lunch time. I force myself to eat lunch exactly two hours after I finish eating breakfast. The routine is helpful in remembering to eat, because hunger often never comes. Quite often, before lunch comes, I have a spell of reduced consciousness. My body goes limp, and I am unable to respond to much. If anyone is around and realizes that I am not just asleep, they may come and force a salt pill and water in my mouth. That will resolve the spell within ten minutes, most days. If no one is around or notices, I may remain semi-conscious for an extended period of time, unable to do anything. For lunch, my mom or my fiancé helps me to get apple slices and Triscuits. Then, I take my lunch pills. At this point, I am still unable to get off the couch for several more hours.

On a good day, around 5:00, I will be able to go get washed up and dressed. I don't have the energy for a shower every day, or to even get dressed every day. But most days, I do get to eat dinner and take more pills. Since I can’t drive, there is nothing to do after dinner. I don’t have the energy anyway. I’d like to go for a walk around the block for my Physical Therapy, but currently, I’m not allowed to, because I’m so likely to have a drop attack. (I would enjoy getting out of the house, but even a walk around the block causes a considerable increase in pain, even on a good day. But this isn't allowed right now.) So, I generally just sit around and watch t.v. until 9:00, because that’s the only time of day that I may have company. At 9:00, I may try a few exercises (planks, toe raises, etc.). I’m always too tired, but I’ll force myself somedays. It is pure torture to exercise. If you see me exercise, you'll wonder what is wrong with me. But that's just the look of pain on my face from the exercise.

Miraculously, the best time of day for me, and many POTS patients, is late at night, which is why I’m typing this at 2:00 a.m. Unfortunately, this is another lonely time of night. Lately, the loneliness leads to a lot of tears, but that's not too unusual. It also ends up being a very unproductive time. But it’s hard to go to sleep too early, when it’s the best you’ve felt all day.

I've skipped over exciting things, like drop attacks, where I collapse straight to the floor in the middle of whatever I'm doing, or days of horrifying pain that prevent me from leaving my darkened bedroom. We'll skip any emotional peaks or particularly strange symptoms. We'll stick with average days.

So, that’s life. And I think it explains why I find it essentially impossible to work, nearly impossible to work out, and why I haven’t been able to maintain any friendships in years. How do you maintain a social life with a life like this (other than a virtual one)? Virtual friends are great, but they may or may not be counter-productive to real life relations, or so I’ve heard.
And so, I keep on living. Thank goodness for compassionate caretakers and little canine companions.

Disclaimer: I don't mean to say that this is what a day in the life of anyone with these conditions is like...just that this is what an average day at this point in my journey is like.

Friday, April 30, 2010

Nothing New

No new developments in my medical life.

This Monday, May 3, the Fox show, "House," will be focusing on diagnosing a patient with Chiari Malformation. The episode is called "The Choice." Based on the promo, we know three things so far: 1. The patient is male. 2. He is accused of faking his symptoms. 3. He begins lactating. The second fact is very common of Chiari patients. And the lactating seems to be a sign of hormonal imbalance, probably caused by flattening of the pituitary gland, which is also common in Chiari patients. They just had to find a shocking presentation of the disease for the show. (At least this is my analysis.)

I'm pretty excited to see it. I hope a lot of people see it. We'll see if it can bring some awareness to the condition.


I found a compilation of symptoms of autonomic dysfunction that is really comprehensive. I'm including the link here. I'm also going to include a few that I found to be particularly specific to me that I hadn't seen before.

http://heavenleigh412-ivil.tripod.com/id23.html

-"Irritability due to decreased blood flow to the brain"

-"Inability to tolerate changes in temperature"

-"Abnormal deep tendon reflexes"

-"Intelligence is normal when receiving adequate cerebral perfusion."

-"Disruption of sleep/wake cycle usually consisting of increased energy late in the evening and lowest energy level in the morning regardless of amount or quality of sleep."

-"Need to sleep 12-14 hours in order to complete simple activities of daily living."

-"Distorted depth perception resulting in a feeling of unsteadiness. Often appears to be "clumsy" or excessively cautious when climbing stairs or reaching for an object."

-"Decreased awareness of what is in the peripheral visual field. This often causes the patient to startle because he/she did not perceive anyone or anything next to them.

-"Frequent "bumping into things." Attributed to a combination of visual and depth perception deficits."

-"Noise sensitivity. Loud or beating sounds can cause pre-syncopal episodes. Difficulty filtering out sounds. Easily distracted by sounds."

-"Sensitivity to odors. May cause extreme nausea, retching, vomiting, dizziness, and headache."

-"Sensitivity to touch. Mild pat on the arm or squeeze of the hand can cause excruciating pain, especially right after an episode or if the patient has not had enough sleep."

-"Taste and appetite changes. Fruits and other acidic foods may taste extremely acidic. Foods may taste differently if patient is tired, stressed, or post-syncopal episode."

-"Speech disturbances: Inability to finish a thought, loss of train of thought, especially if up and about for 2 hours or more without lying flat and resting."

-"Comprehension difficulties. Inability to follow a conversation. May hear words but be unable to understand their context in a sentence. Cannot focus on more than one activity at a time. May not realize they are being addressed. Looses conversation focus when topic is changed. Is easily distracted from the conversation focus by any environmental stimuli.

-"Memory recall deficits in long and short term memory. Improves with lying down and resting."

-"Abdominal migraines. Severe stomach pain triggered by large meal or sitting or standing too long. Usually resolves if patient lies quietly."

-"Drifting to the right or left when walking."


I just found these to be interesting, as they are all quite specific symptoms that may not have been noted elsewhere. I found them all at the website listed above.




Monday, April 19, 2010

More Doctors

Appointment with Endocrinologist 4/5/2010

I don't quite know how to explain what happened at this appointment. It didn't go well. It felt like an interrogation, actually. First, she asked if my surgeons were satisfied with my recent DEXA scans. I told her that I wasn't sure, but I thought that they wanted me to continue on the medication, since I am still in the range of Osteopenia. She said that this was ridiculous, and with any other patient, we would be celebrating right now. She said that she would not renew my prescription for Forteo any longer, because my bones are strong enough as they are, and no reputable surgeon would require them to be any denser. The interrogation began. She started asking me questions about the reasoning for each of my surgeries and what improvements I saw with each one. Then she questioned why I was having my current surgery. She told me she thought I should consider if I really needed the surgery, and getting a different surgeon. At the very least, she thought I should see a neurosurgeon that she recommends for a second opinion...a neurosurgeon that doesn't even specialize in Chiari, much less cranio-cervical instability and fusions. Before I could even ask her the rest of my questions, she walked out of the appointment, not to return. It was completely condescending and rude. I felt like I'd been slapped across the face. At the same time, I wasn't surprised. I've been through all of this before. It's just been a while.

I did learn one positive thing at this appointment: I asked her if my salt intake was affecting my bones, considering I take salt tablets regularly, so I get more than the average recommended amount. She said that all of my tests showed normal amounts of sodium in 24-hour urine samples, and I don't need to worry about my salt intake at all. YAY!!! My body simply metabolizes much more salt in a day than a normal person, so the salt doesn't leach calcium from my bones. So, as long as I don't take more than I feel I need, I'm fine. I know I was taking 5-6 tablets a day when I had those tests done. So that should be a safe amount for me.


I am not certain if I will return to this endocrinologist. I may need to find a new one to prescribe Forteo, which I know won't be easy, from experience. But I will wait for now.


Appointment with Dr. Grubb 4/14/2010

My appointment with Dr. Grubb was excellent.

He is unhappy for me that I need another surgery, but he is in support of the surgery, and expects that I will see some improvement in POTS symptoms from the surgery. It seems we have come to the understanding that my POTS symptoms will never be cured. But he says that if the surgery helps, then the symptoms will be easier to manage with medications.

Surgery recovery is expected to cause another large setback in POTS symptoms. There is simply nothing to do about that. But if I am struggling a lot, I should consider contacting him. Perhaps to consider IV fluids to get me through the rough time.

Exercise is still Dr. Grubb's number one concern. He suggested a recumbent bike for ongoing cardio exercise. We are looking into buying one used. They are quite expensive. But if we can find a good deal, it may be a possibility. I'm also supposed to walk around the house wearing ankle weights to build up leg strength. We'll see how that goes.

He's changing my dose of Midodrine a bit. We're going to try for higher doses with breakfast and lunch to see if I can be active earlier in the day. Usually, I cannot walk around until after dinner pills.

Finally, he wants me to add a couple of supplements. He wants me to be taking D3 in liquid form instead of solid form. Also, I'm supposed to look for a flavored liquid fish oil supplement. That sounds absolutely disgusting to me, but I guess I could try it. (I'm particularly picky, so I'm really not sure if it will work out...)


Upcoming Appointment with Dr. Bolognese 6/18/2010

I have an appointment set to see Dr. Bolognese in New York. Here is what I know about it:

The surgical committee did NOT deny my ICT (Invasive Cervical Traction) because of bone density. They did not believe there was enough evidence showing I was a good candidate for ICT.

So, protocol states that to qualify for ICT, I need to have a consultation at TCI (The Chiari Institute) with new imaging and new testing showing that I have symptoms of cranio-cervical instability/cranial settling.

After the appointment, the surgical committee will vote on ICT again.

If they determine me to be a candidate, I will have ICT.

If the ICT is positive, the surgical committee will vote on surgery.

If they determine me to be a candidate, I will have the cranio-cervical fusion revision.

It's a TON of red tape, but it's the only way that I will have this surgery. And it's the only way that they can be absolutely certain that I need this surgery, and that this surgery will help me.

So, this is the way it needs to be done.

It's a long, long, long road since that first surgery in 2002.

This time, I'm hoping to recover from surgery in time to have my wedding in the summer of 2011, whether or not I have hair!

Monday, April 12, 2010

Exercise and Doctor's visit

First, I have been exercising regularly (but not quite daily) since March 1st. It has been pure torture, to be honest. I wish I had a gym available to me, but I certainly can't drive to one right now, and I don't belong to a gym, much less one that's open at 10:00 at night, and I don't have a personal valet to drive me to one, anyway. So I'll just have to deal with that. That means that I don't have a recumbent bicycle for cardio (or the seated elliptical trainer from PT). So, I have two options, depending on the day: take a brisk walk around the neighborhood or climb up and down the stairs in my house. I hate the stairs, but it feels like good exercise. My best is up and down 40 flights in about 20 minutes. It hurts my joints and I have to monitor my heart rate carefully. Every time my heart rate surpasses 170 bpm, I sit down. It happens pretty frequently. I break out a good sweat. I can't describe how horrible it feels, but it's what I'm trying right now.

That's cardio. For strength, I do weight lifting with a 5 and a 10 lb. weight, and I do various core exercises. They feel terrible, as well, but what are you gonna do?

Easter week, I was feeling quite a bit better. But I think it was just a fluke. I'm definitely back to where I was, if not worse. I can barely move most of the time. It seems like I save up all of my energy for exercise, and then I suffer for it the rest of the time.

There's a study taking place right now by a research team in Texas on POTS and exercise. It has been accepted for publication in the American Journal of Cardiology. I will link to the findings when they become available. From what I've learned so far, I may be going about this exercise all wrong. This team advises only sitting exercise...no standing, or you will "overtax your system and setback your recovery." Maybe that's what I'm doing right now. They advise the use of a rowing machine or a recumbent bicycle for cardio every other day. No walks! Certainly no stairs. That does sound more manageable. I will have to consider this more. I look forward to the research being published. For more information, read here: http://www.potsrecovery.com/


I have an appointment Wednesday in Toledo with Dr. Grubb to discuss my POTS treatment. I plan to ask him for his advice on exercise, although I know he generally advises leg strengthening the most. I don't have a leg press machine at home, so stairs are probably the best thing I've got, along with ankle weights. (I wish I could still go to the gym!) I don't have any other specific questions, so I will just see if there is anything else the good doctor has to offer at this time.

I have more on which to update, but it will have to wait until after this trip to Ohio.

Tuesday, March 30, 2010

Surgical Review Board Says....

No to Invasive Cervical Traction at this time.

I'm not surprised, nor am I disappointed, as I did not expect anything at this time. It's too soon, and I know it.

Oh, the wonders of having very low expectations and very little hope (for now).

Dr B, however, wrote to me directly, telling me that I should schedule a follow-up visit with him, now. I really don't understand why I would need to see him right now. He's the neuro-surgeon. I don't qualify for invasive traction or re-fusion at this time. So, why would he want me to fly to New York to meet with him right now? Maybe he's changing my surgical plan? I'm just not sure why I need this appointment right now. This is the waiting time. Waiting for the bones. Then, when I have a better DEXA scan, wouldn't that be a logical time to have a follow-up visit? When my body is ready for surgery?

I'm going to ask my nurse about the details of the visit, to see if she has any answers. But I suppose, if THE man wants to see me, then I probably want to see him, too. I don't have much else to do right now, to be honest. Really quite bored.

Tuesday, March 16, 2010

Maybe...

I heard from my nurse at TCI, and she said that Dr. B is willing to see me for a follow-up appointment now, meaning that he thinks my bone density has shown enough improvement. However, we need to wait until the surgical review board votes to determine if I am approved for Invasive Cervical Traction. So, I was given the option of going to see Dr. B right away, or waiting until a decision is made on the traction. I decided that for financial reasons, we will wait until a decision is made on the traction, and hopefully do both things on the same trip to New York. Of course if it isn't approved, then the whole trip will be delayed anyway.

That's the update...not much of one. I'll write again when I have actual news, from the surgical committee, since they seem to decide everything now anyway.

Wednesday, March 10, 2010

Reassessing

As I discussed in the last post, I've needed to reassess my situation, based on the fact that my surgery will most likely not be this spring. (I haven't yet heard anything final from my nurse at TCI or Dr. B...I'll let you know when I do hear something final.) I am determined to not let this discouraging news paralyze me.

So today, I would like to write about what my new plan for the next months of my life will be. Without a plan, it's easy to lose hope. But with it all written out, I can know that I am on track for a determined future.

First, I need to hear from TCI, of course. I need to find out what bone density numbers I should be aiming for, so I can know how soon I should plan on having my next DEXA scan. Also, I'd like to ask them for a prescription for a new CTO (cervical-thoracic-orthosis). I haven't been able to wear mine, ever, because it doesn't fit right. I'd be interested in getting either an Aspen CTO or a custom CTO. This may allow me more upright time during the day until I can have surgery.

Next, I made an appointment to see my endocrinologist. I would like to discuss several things with her. First, I'd like to make sure that she is willing to extend my Forteo treatment until surgery (and for at least 3 months after surgery, to allow adequate bone growth after surgery). I'd also like to find out if she has other recommendations to raise my bone density. I'd love her advice on specific exercises I can do or any dietary changes I can make. I am also curious if there are any other supplements she can recommend or if she would recommend a limit on the amount of salt I take in each day.

Also, I have made an appointment to see my POTS specialist. I need to see him yearly. I would be interested in his ideas on how to manage exercise with the extreme heart rates endured by my body.

I also need to get a new local cardiologist to monitor my bicuspid aortic valve and valve leakage problems. I need a new echocardiogram as well.

Dr. F recommended that I try Myofasical Release. However, I have yet to find any doctor that practices this within the confines of evidence-based medicine, so it is not covered by insurance, and I am not really interested in it at this point in time. I know that physical therapists have other therapies to offer that may be of benefit (like laser therapy). Unfortunately, only myofascial release was recommended at this time.

I have gotten orthotics for my shoes. They are extremely uncomfortable, but supposedly, that means they're working! If they were all squishy and gel-based, they wouldn't be doing anything for my sagging arches. Mine are made of cork and leather, and they are serious business. I think I am gradually getting used to them.

Since I got my bone results at the beginning of March, I have started two things: I've begun nightly exercise, no matter how terrible I feel. I can tell that I am stronger already. I'm following my own exercise plan, based on the equipment I have available, and the ridiculous number of exercises I've learned in my year of private training and multiple stints of physical therapy. But I really have to base the plan on my body's abilities for that day.

I've also reduced my salt intake by 66%. I'm now taking only 2 salt pills a day (instead of 6). It's a challenge. I've added Gatorade, and I think I'll need to add more. I just may chug Gatorade all day. I'm wondering if I can cut the salt pills in half, so I don't get such a megadose of salt. Just a little kick to keep me going. Then, maybe I could take them more frequently and not zone out so much of the day.

Besides that, I also plan to take a Spanish class at the local community college this summer. They offer a blended course (half classroom, half online). That way, you spend half as much time in the classroom. And classes are offered in the evenings. So, it would be a real possibility for me. It might be overdoing it, but I'd really like to do this.

So, that's the plan. I just need to hear from TCI for confirmation.

Monday, March 8, 2010

Dealing with Disappointment

I've been forced to learn a lot about dealing with disappointment in my years of being sick. The most constant disappointment has always been the failings of my body. I had to learn in high school that for some reason, my body couldn't do the things that it should be able to do. I missed out on opportunities that I could have enjoyed. Every day was more challenging than it should be. But I learned to deal. I had no choice but to get through high school, excel in my courses, and move on to college. So that's what I did.

My next major disappointment came with the first surgery, in July 2002. It was an initial success. I felt better than I'd ever felt. So, when I began a quick decline after six weeks, having to eventually drop out of college, that was a major disappointment. But I learned to deal. I needed to remain a student to keep my health insurance. So I enrolled in community college and adjusted my expectations for myself. I also made an appointment at The Chiari Institute (TCI). I had to wait 9 months to go there. In that time, I became quite underweight, and lost most of my ability to function. But I kept pushing on, with a new goal in mind.

At TCI, we made plans for another surgery, a cranio-cervical fusion. I went through hard times. I missed out on a lot of life. But I believed that if I got through this, I would have my life back. So, I kept pushing.

My next major disappointment came after this surgery. Despite intense physical therapy, massage therapy, and a lot of patience, I wasn't getting any better. There was nothing more that could be done for me at the time. And my body was more broken than it had ever been. I was very lost for a while. In the end, I had no choice but to form a new plan and start moving forward again. So, I kept working and found a way to return to my college, in an electric wheelchair, 9 months after surgery. It was a long road, but I worked hard, with a goal in mind, and graduated school as planned. I even began working, part time, after graduation. I started my own piano studio, teaching 10 hours of lessons a week.

Unfortunately, the next disappointment was never far behind. As hard as I tried to pretend that I was fine, it was clear that I was not. My symptoms were unbearable. I hadn't contacted TCI in a while. When I did, they ordered some tests. They decided it was time for my next surgery. Life would need to be put on hold again. In June 2008, I had my spinal cord untethered. During the same trip, I had a life-changing experience: I had invasive cervical traction repeated. This test came back positive. This means that even though I already have my head fused to my spine, I still need more surgery to correct a problem of functional cranial settling in the area. So, I had a new reason to hope. The surgery on my spinal cord didn't seem to help much. I have actually been on a decline since then. I would have begged for them to perform the other surgery that day, but they wouldn't. They won't perform the surgery until my bone density improves.

That has been a new source of disappointment for me: my frustrating bone density. When I was first tested, my bones were practically average; just a little soft. But not strong enough to qualify for surgery. Unfortunately, the first endocrinologist I saw refused to treat me. There were two reasons: he refused to treat a pre-menopausal woman for osteopenia. And, he refused to treat osteopenia that was so mild. When I brought him a note from my neurosurgeon, he refused to see me anymore. He did refer me to another doctor.

The next doctor had similar concerns. The medications used to treat osteoporosis and osteopenia are untested in women my age. So you need to have really bad bones to get approved for them. It was decided that we would start with non-drug treatment. Unfortunately, my next DEXA scan, of course, came back worse than the last. So surgery was looking further and further away. Then, in October 2009, we finally started with a drug treatment (Forteo). Since it is such a strong drug, there was hope that it would show significant improvement after 4 months of treatment, which is when I had my next DEXA scan. Unfortunately, this showed very little improvement. So, we are back to waiting. This may mean postponing my wedding this time. We had actually planned the date based on having surgery sometime around this April. So, we may have to re-think that.

If I've learned anything from all this, it's that there are ways of coping with major life disappointments. For me, I need to stop and grieve over the loss. Then, I need to re-assess the situation. Then, I need to set new goals and time-frames. Then, I will be able to accept my situation once more, and keep moving forward. Of course, I know that disappointment comes in cycles, and acceptance doesn't last. So I don't expect to stay in this part of the cycle.

Monday, March 1, 2010

Misinformed

I received my DEXA results in the mail today. Apparently, the woman I talked to on the phone misread the results. I actually made very little improvement. I haven't heard from The Chiari Institute yet, but I am very doubtful that these results will qualify me for anything. But, here they are:

DEXA scan performed 1/14/09:
Lumbar Spine:
The average bone density of the L2-L4 region = 0.989 GM/CM2
T-score = -1.8
Findings consistent with Osteopenia.

Femoral Necks
The average bone density of femoral necks = 0.855 GM/CM2
T-score = -1.3
Findings consistent with Osteopenia.

DEXA scan performed 2/22/10:
Lumbar Spine:
The average bone density of the L2-L4 region = 1. 029 GM/CM2 (an increase of 0.04)
T score = -1.4
While the value has increased, the findings are still consistent with Osteopenia.

Femoral Necks
The average bone density of the femoral necks = 0.830 GM.CM2 (a decrease of 0.025)
T-score = -1.2
The value has decreased, but the T-score has not significantly changed, and the findings are still consistent with Osteopenia.


Basically, this means that I was misinformed. I was told that these T-scores were positive values, but they are actually negative values. That makes a huge difference. If the numbers were positive, I could reasonably be approved for surgery this spring. But with negative numbers and bones still osteopenic, I will have much longer to wait before surgery. There's no way to predict how much longer the wait will be at this time. But, just for fun, I would guess the earliest I could be tested again would be 6 months from now, in September. However, if I wait until November, it would be a full year of treatment. Either one of those is a possibility. Insurance may require that I wait until January. So even that is a possibility. At this point, my doctor has only prescribed 6 months of Forteo. Clearly, I will need more than 6 months of treatment to get my bones dense enough for surgery.

My plan right now is to see my endocrinologist as soon as possible to ensure that I continue Forteo. It would also be good to hear from TCI what numbers they are looking for me to achieve, so that I can convince my endocrinologist to continue with the treatment.

Either way, this is a considerable step back in my progress.

I thought that this leg of my journey, the waiting part, was almost over. I thought I'd be planning two trips to New York in the near future.

Instead, I'm facing many more months of the same. Waiting. Missing out on work. Waiting. Missing out on life. Waiting. Possibly delaying my wedding. More waiting. I just may be the most patient freaking girl in the world.

Thursday, February 25, 2010

My Appointment with Dr. Francomano

I've been meaning to update on this for a while. I just haven't been able to get it done.

Dr. Francomano has very thorough appointments, and she even sends you home with a summary of everything discussed during your visit. So, I just have to go through my 8-page "Initial Consultation Summary" and decide what information is the most important. I'll do my best below. Afterward, I'll include any thoughts on the appointment.

First, there was a very complete medical history taken. I'll skip over that, since that information is all available at my website, which is now archived (http://zippergirl28.tripod.com).

There is then a list of diagnoses from my history:
*Chiari 1 Malformation, decompressed 2002
*Dysautonomia, POTS, diagnosed 2003
*Cranio-cervical instability/cranial settling, status/post fusion 12/2003
*Occult tethered cord, status/post untethering 6/2008
*GERD
*Paipilledema
*Osteopenia, diagnosed 3/2008
*Hyperparathyroidism
*History of Vitamin D deficiency
*IBS
*Scoliosis
*Restless Leg Syndrome/Periodic Limb Movement Disorder
*Hypovolemia
*Bicuspid Aortic valve
*Aortic Regurgitation

Surgical History
*Tonsillectomy, 3/2002
*Posterior fossa decompression, craniectomy, C-1 laminectomy, 7/2002
*Invasive cervical traction, 11/2003
*Cranio-cervical extraction fusion, skull to C-4, 12/2003
*Cholecystectomy, 4/2008
*Section of Filum Terminale, 6/2008
*Repeat invasive cervical traction, 6/2008

Hospitalizations
*1/16/03-1/25/03: severe drop attacks and blackouts, diagnosed with POTS

Known Allergies
*Compazine: dystonic reaction
*Wellbutrin: seizure
*Sulfa drugs: severe gastrointestinal distress
*Opiates: rash, severe pruritis
*Adhesives: skin deterioration
*Sensitivity to many medications, especially antibiotics and narcotics

Review of Systems
Frequent fevers
Difficulty falling asleep
Difficulty staying asleep
Chronic fatigue
Nearsightedness
Ringing in the ears
Swallowing difficulties
Shortness of breath
Ches pain
Racing heart beat
Light-headedness
Fainting
Heart murmur
Exercise intolerance
Nausea
Abdominal pain
Digestive problems
Urinary urgency
Urinary frequency
Easy bruising
Temperature instability
Migraine headaches
Non-migraine headaches
Tremors
Numbness
Frequent falls
Brain fog
Loose joints
Joint pain
Joint subluxations
Muscle pain
Scoliosis
Vertigo
Palpitations
Myoclonic jerking

Next was the review of my family history. I list a couple of the key points here:

A three-generational family history was obtained. Pertinent findings include:
*Joint pain and history of two shoulder dislocations in one family member
*Knee subluxations and joint pain in one family member
*Joint laxity in one family member
*Joint laxity and history of dislocations in one family member
*Knee subluxations in one family member
*Intra-cranial hypotension, spinal cord leak, hip subluxations, and joint laxity in one family member
*Degenerative disc disease in one family member
*Osteoporosis, scoliosis, arthritis, and loose knees in one family member
*Migraines, early-onset osteo-arthritis, weak ankles in one family member
*loose ankles, runner's knee, and tendonitis in wrist in one family member
*Atrial septal defect, arthritis, and degenerative disc disease in one family member

Pertinent Findings from the Physical Examination
Height: 64" (I shrunk again!)
Facial Features:
Grey sclerae (The whites of my eyes are not white when you shine a light in them; they're grey, because the connective tissue is very thin.)
History of dental crowding
Palate: High, not narrow on examination, but she is status post palatal expansion
Uvula: asymmetric
Other: widely dilated pupils, symmetric, reactive to light (must have been a good day)

Neuromuscular
Abnormal: absent proprioception, marked dysmetria on finger to nose testing, difficulty with rapid alternating movements. Reflexes are 2-3+ and symmetric. Downbeat nystagmus noted. No clonus, no Babinski. (Basically, this means that I have a number of strange neurological responses.)

Musculoskeletal
Downsloping ribs present (My ribs go down lower than they should, so there's a short distance between my rib bones and my hip bones.)

Beighton Score
Passive dorsiflexion of 5th MCP >90 deg. R and L (My pinkie finger can be bent back beyond 90 degrees, barely. That gets me 2 points.)
Thumb can touch forearm R and L (I can do this on both sides, getting me points 3 and 4.)
Elbow hyperextension beyond 10 deg. R and L (She actually measured. Every other doctor just "eyeballed" it. Both elbows did bend backward more than 10 degrees. Points 5 and 6)
Knee hyperextension beyond 10 deg. R and L (Both were quite bendy. Points 7 and 8)
Can touch palms on ground with knees extended. No (I always could do this one, but haven't been able to since my detethering, for some reason. So, my Beighton Score is officially on 8 out of 9. Much higher than other doctors have measured it.) Measurements to follow.

More hypermobility
Able to touch tongue to tip of nose

Shoulder Hypermobility: Hyperextension on both sides

Elbow Hypermobility:
Left: 15 degrees hyperextension
Right: 11 degrees hyperextension

Hip Hypermobility: Hyperextension on both sides

Knee Hypermobility:
Left: 20 degrees hyperextension
Right: 25 degrees hyperextension

Small Joint Hypermobility
CMC joint hyperextension
MCP joint hyperextension
DIP joint hyperextension
(My hands really are not very flexible. You want to see crazy flexible hands, you should see Gustavo's. He doesn't have EDS. Just stretchy hands.)

Pes Planus present (I have flat feet.)
Piezogenic papules present (These little tiny bumps that appear on the inside of my heel when I stand.)
Scoliosis present
Straightening of the cervical lordosis present
Straightening of the thoracic kyphosis present
Lower thoracic lordosis present

Skin
Soft texture present.
Hyperextensibility of the skin present (I never thought I had this. But she stretched the skin on my hand and around my neck and I guess it stretched more than normal.)
Translucent skin present (We all knew this one...everyone whose ever tried to do my makeup!)
Scarring present: atrophic scars on both knees. Well healed surgical scars, cervical and lumbar.
Evidence of bruising

Other Findings
She is wearing a Vista collar. There is a II/VI systolic ejection murmur heard best at the left upper sternal border.

Impression
Based on the above, it is our impression that Ms. Richardson has joint hypermobility, soft, translucent, stretchy skin, and craniofacial features consistent with classical Ehlers Danlos Syndrome. Her bicuspid aortic valve and the atrial septal defect in her [family member] are of interest and may suggest a specific sub-type of heritable connective tissue that has been described recently.

The family history is remarkable for connective tissue findings on both sides of the family and it is possible that she has inherited one allele from her mother and another from her father.

Other notes
"EDS affects collagen. Collagen is a protein, which acts as a 'glue' in the body, adding strength and elasticity to connective tissue.

It is important to note that the range and severity of symptoms may range from person to person, even within the same family. Most types of EDS are inherited in an autosomal dominant manner. This means that if a parent has EDS, each of his or her children have a 50% chance of also having EDS.

(We also discussed the genetics of the trifecta. She agreed that it is much more unpredictable, and while research is being done, we may never be able to predict or prevent passing on the trifecta. She couldn't say much more about advising me in my decision, because we just don't know. She was aware of "trifecta families", in which both Chiari and EDS seem to be passed down at a much higher rate than they would on their own.)

Individuals with joint hypermobility often experience chronic muscle and joint pain. The age of onset may vary from adolescence to older adulthood. The pain can vary in the number of sites of the body that it affects, in duration, severity, and response to therapy. The severity of pain is generally greater than what is expected based on physical and radiologic examination. Sleep disturbances and chronic fatigue are often present among individuals with chronic pain. Affected individuals are often diagnosed with chronic fatigue syndrome, fibromyalgia, depression, and hypochondriasis prior to receiving a diagnosis of joint hypermobility. The cause of the pain is not entirely understood. However, it is thought that the pain experienced by individuals with joint hypermobility is related to myofascial and neuropathic pain. Myofascial pain is usually located around or between the joints and is often described as aching, throbbing, or stiff and may be caused by muscle spasms. Chronic joint instability may cause the myofascial pain, as the muscles attempt to respond to the joint instability. Neuropathic pain may be caused by nerve impingement (caused by subluxed vertebrae, herniated discs, osteoarthritis, or other subluxed joints) and is often described as electrical, burning, shooting, numb, tingling, or hot or cold discomfort." All quoted from Dr. Francomano

Recommendations
Aquatic physical therapy for muscle strengthening (however, she said to hold off for now, because my body is not ready at this point)
Myofascial trigger point workbook to help with myofascial pain
Lidoderm patches for pain
Actipatch for pain
Orthotics for flat feet (I wonder if I just get these at the store, or go to the orthotist?)
Diclofenac topical for joint pain
Epsom salt foot baths
Follow up with TCI as planned

And that was it. I really like her. I would say the only thing that disappointed me a bit were the treatment options. I didn't realize there was so little to do for EDS pain. I'm not sure where to find a myofascial release practitioner, and she prefers that it is a physiatrist, and I prefer that it is one covered by insurance. Either way, I'm not sure that right now is the best time to start a new therapy regimen.

Also, I had 8 questions I prepared for her, but she didn't really have any answers for me.

She had no ideas on recovering from surgery.
She had no ideas on finding a physical therapist or a myofascial release specialist.
She had no ideas on my episodes of reduced consciousness.
She had no ideas on maintaining bone density after discontinuing Forteo.
She had no suggestions on IBS other than fiber.

So, I guess I thought she would have more to recommend on those ideas, but I definitely should have focused more on EDS, but those really are related to EDS, mostly.

I'm still glad I went. I have a definitive diagnosis. I have another specialist on my side. And I believe I'll be able to count on her if a problem arises.

Tuesday, February 23, 2010

A Very Big Day

After being diagnosed with osteopenia in March 2008, then continuing cranial settling in June 2008, I knew exactly what I needed to do. I needed to have my cranio-cervical fusion revised. I knew that if I could have my skull raised and re-fused into the sweet spot, I would have less pain, more energy, and a higher quality of life. Dr. Milhorat believed that was in my future, and I do, too. Before I could have that surgery, I would need to have my osteopenia corrected. The medication Forteo was recommended for me by my New York doctors.

Unfortunately, this would be a much bigger challenge than I anticipated. My first endocrinologist refused to treat me, because I was too young, and my osteopenia was not severe enough to require treatment. So, I went to a new endocrinologist. She insisted on trying a year of conservative treatment first. I had no choice. She was willing to work with me and my doctors in New York, so she was the best choice I had. The conservative treatment involved calcium supplementation and mega-doses of vitamin D. I ended up with too much vitamin D in my system, but I still wasn't absorbing enough calcium, based on the blood and urine tests. So, on October 26, 2009, she finally prescribed Forteo, which is one of the only medications known to actually rebuild bone.

I used my Forteo as prescribed, in daily injections. The time until my DEXA bone scan passed so slowly. But when the day finally came, the question was: had it been enough time? Had the bone had enough time to grow?

I had my bone scan yesterday. I got the results over the phone today.

This is how to understand a DEXA scan results:
A T-score compares your bone density to the optimal bone density for your gender by standard deviation.
Here's the scale for T-scores:

Osteoporosis: T<-2.5 Osteopenia: T= -2.5 to -1.0 Normal Bone Density: T= -1.0 to 1.0 Increased Bone Density: T> 1.-0

Here are the results of my DEXA scan performed 1/14/2009:
Bone density at the lumbar site: T= -1.8
Bone density at the femoral site: T= -1.3

Here are the results of my DEXA scan performed 2/22/2010:
Bone density at the lumbar site: T= 1.4
Bone density at the femoral site: T= 1.2

This shows a significant improvement after only four months of treatment with Forteo!!!!!

So, I emailed my nurse in New York immediately. I told her my results. I told her to watch the mail for her copy of the results. And I told her that I'm ready any time for the consultation and invasive cervical traction. So, I expect to hear back from her shortly. And I'll keep you up to date.

UPDATE: I LATER FOUND THAT THESE RESULTS WERE INCORRECT AND I WAS MISINFORMED. THE POST-TREATMENT T-VALUES ARE NEGATIVE SCORES.

Sunday, February 7, 2010

An Eventful Day

Friday was quite an eventful day, which is pretty impressive, considering my many limitations.

It started off with a morning in which I couldn't sleep too much. This has continued since then, and I know I'm leaning toward the hypomanic side, so I blame it on this. Due to this, I started reading my book around 8:00, and I got out of bed around 9:15. I ate breakfast. Then, went back upstairs and sorted out some of my stuff (in the a.m. hours). I took a Provigil at this point, because I knew I would need it for the day. (I'm not taking Provigil with any regularity anymore, because it makes me do more than my body is capable of doing.) Next, at about 11:00, I got in the bath, which is actually quite an arduous task, for me. I packed up the rest of my stuff for my weekend in Wisconsin. My mom and I left the house at 1:15 (This is a very active start to the day).

We went to a 1:50 appointment with the eye doctor. I had two scans done there. Since I have very large pupils that are completely non-reactive to light, I didn't need to be dilated for either scan (just another sign of worsening autonomic dysfunction due to brainstem compression). One scan was a 3D optic nerve scan. This was just a couple really bright flashes in each eye. Really bright lights. It took a 3D picture of my optic nerves. Next, I had an optical coherence topography scan done. This one is pretty cool. It shows the depth of the optic nerve. With these scans, they were able to determine that my vision is essentially "safe." Even though the discs are bulging, underneath it, there are thousands of healthy nerve fibers. So, my vision is not at risk, over time, or with surgery. She also explained the bulging as an anatomical anomaly. Whereas most people have optic nerves that are "innies" (think belly buttons), I have "outies." What a perfect explanation, right? So, that's why my optic nerves always look so funny, and seem to perplex so many doctors. I may not have even ever had papilledema in the first place. But my weird optic nerves did catch the needed attention to get a brain mri ordered in the first place. Just another weird anomaly of my very interesting anatomy. I really do have an interesting list of birth defects. What a weird little girl my parents never knew they had!

After the eye doctor, we were hoping to catch a 3:37 train to Milwaukee. Unfortunately, there wasn't nearly enough time to get to the station. So, we had to stall. The next train was at 5:32. It seemed like a lot of time, but the station was a ways away, in rush hour traffic, in snowy weather. So, we decided to stop at Costco to sort out a membership issue. Then, we stopped at Subway to buy my dinner that I would eat on the train. I got to the station by 5:00. I had to sit around a bit, but it's better than missing my train.

Okay, are you ready for another train story?

Well, I was ready for my train this time. I had my bags. I asked for help with only getting my walker up the stairs. Sounds easy enough. I was the last one onto the car, as always, because I'm handicapped. So, I stood there alone, trying to fold up my walker while holding 3 bags. It was actually really hard to do. You need to get the walker at just the right angle to fold the sides in. By the time I had it folded up, I saw that there was absolutely no where to put it. There's only one place on each car to put walkers and wheelchairs, but the area isn't actually reserved for them. It was completely full of suitcases. I decided I would just lean my walker sideways against the suitcases and get to a seat as soon as possible, because I know how hard it can be to find a seat. Unfortunately, I was too late. The train started moving. My walker was already folded up. There was nothing on the walls to hold on to. I fell flat on my butt, and with the movement of the train, rolled backwards onto my back. Everyone in the train car was staring at me, but no one moved to help me. I really didn't know what to do.

Luckily, on my train each weekend, a guy named Marty sells concessions. He is one of the friendliest guys you'll ever meet. While I was on my back, he came running down the aisle. He immediately moved the baggage out of the way for my walker. One lady whined/complained ("Hey! That's my bag!"), but he didn't care at all. Then, he told the person sitting in the front seat she would need to move. She looked shocked and appalled, but she did it immediately. Because Marty meant business. Keep in mind, the train attendant didn't do any of this himself, even though it's his job. Marty helped me up and even brought me a free bottle of water. It's amazing. Everyone will stare at you. But not a single person other than Marty offered to help. They even looked annoyed at having to do anything that might disrupt their day.

So, I should have been set for the rest of my ride, right? No. Because I'm me. But really this part of the story isn't about me, so I will do my best not to make it about me. After about 10 minutes of our ride north, our train came to a sudden stop. The emergency brake and been pulled. I was facing backward (bad idea), so the pressure on my neck of the inertia of the train was intense. The lights flickered off and on. It was a little scary. A very vague announcement was made about an "incident" and a "delay." So, we sat. For quite a while, we were under the impression that something was wrong with the train. Eventually, during one of my phone calls with Gustavo, he read online that pedestrians had been hit by a train in Lake Forest. I knew immediately that it was our train. We learned later that two teenagers were hit, and at least one of them was killed by our train. We stayed where we were for 2 1/2 hours. No passengers were allowed off the train. Marty wasn't his same cheerful self, but he did sell out pretty much all his merchandise, especially all of his alcohol. But we, the passengers, were never officially informed of the nature of the "incident." We figured it out on our own.

My back was in serious pain by the end of the night. The seats recline, but just barely. And my head pain spread throughout my skull. I felt very faint during much of our delay. But again, this night wasn't about me. Some passengers didn't realize that this delay wasn't about them. For example, as we were waiting, one woman was making very loud phone calls during most of the ride. On every phone call, she would say, "I'm having the worst day ever. You wouldn't believe what's happening to me." I understand that it was an uncomfortable inconvenience. But we had a bathroom and concessions that didn't quite run out. So, I'd say, we didn't have it so bad. The families of the victims had a very bad day. The train engineer that left the train with a pale, blank face after having seen everything happen: he had a very bad day. But for the passengers, it couldn't possibly be the worst day.

But, I'm very glad it's over, and I'm very sorry that it happened. It's just a rumor, but I heard that they were just walking across the tracks, and didn't see the lights. There was another death at this same station just a couple months ago.

Moving on, because it's hard to think about this too much.

For me, personally, I need to figure out how to work out the train ride a little bit better. I certainly don't have a manageable system figured out yet. I could go back to the wheelchair, because then I won't need to stand up on the train, but I will have to deal with the lifts and the fact that I don't get a real seat; I have to stay in my wheelchair. That causes the bumps of the ride to be especially rough. So I don't like that option. So, I think what I need to do is the following:
*Get in line with my walker, but collapse the walker on the platform, so I don't have to do it on the train, as it takes up valuable time.
*Ask the attendant to stow the walker for me AND assist me to a seat, so I don't fall down.
*Bring less baggage.
*Wait until the train has definitely stopped to stand up, or I will just fall down again when it lurches at the end.
Maybe, if I do these things, I won't have so many little disasters on the train. I'm still feeling the falls. I really cannot stand up whenever the train is moving. It just multiplies my vertigo, making it impossible to stay upright without strong assistance.

Medication update:
The side effects from the Topamax are wearing off (the tingling), but I don't think my headaches are any better. I will try to increase the dose this week. The Mobic, which is supposed to be like Celebrex, but better, isn't working well at all. I think I'd be better off with Advil, at this point. So, I'm going to test out Celebrex soon.