Bad Day

Well, it's been a week since I've last written. Is that a good sign or a bad sign? Neither, I guess. I might have been a little busier than normal. We had our Chiari meeting, but it was a very small (but friendly) group. My Uncle Jim is in town, which is very exciting. I met with a chiropractor last week. He's giving me a free initial evaluation and formulating a treatment plan. Don't worry, the plan involves absolutely NO adjustments of the spine. Not smart with Chiari, EDS, or Osteoporosis. He does want to try some energy healing. I don't believe in it too much, but he feels that he can reduce my body's pain reception, so I don't feel as much of this pain. Who am I to turn down the offer?

I'm also eagerly waiting for my appointment with Dr. Wilkin, the neurologist and pain specialist, on July 20...that was the earliest appointment there was.

I've been using a Thera Cane for trigger-point therapy. I like it. I'm glad I have the option of giving myself a massage, essentially.

I received the long-awaited packet of surgical reports from the hospital in New York. Unfortunately, they sent tons of papers, but none from my cranio-cervical fusion, even though I explicitly requested it. I'll have to start the long process of requesting those particular pages again.

I don't think I'll wait anymore to send the package to Dr. Menezes. I can send him the surgical report later. I just don't want to wait anymore, so I'll be getting the package together this week.

Today was a day off, because work is very slow this summer. But I would've had to miss work anyway, because it's been a VERY sick day. I haven't been able to get off the couch at all, except for bathroom trips. Otherwise, I'm totally stuck here. Even lying down, it's hard to get comfortable after being here all day. I've been nauseated, tired, out-of-it, crabby, and in lots of pain. I had a low BP spell where I was barely conscious and not able to move. My joints hurt, just laying around on the couch...my knees and hips hurt. And I have an ice pick over my right eye, in addition to all over head pain. It's hopefully peaking right now, at an 8 or 9. I haven't been able to eat much, and I have the feeling of a lump in my throat that makes me want to gag constantly. That also makes it feel like I can't breathe.

I want to buy a cane that turns into a seat, since my walker doesn't always fit in places, like restaurants. I've just got to decide which one to get, and wait a while, since I'm not allowed to buy anything else this month. There's a few on amazon.com for around $20.

In my free, bored time, I've found something really fun to do. I signed up for a free 7-day membership of lumosity.com. It has some really fun games to train your brain! I love it! I don't know what I'll do when my membership runs out. It's so addictive! I love all the different games.

Okay, back to dealing with overwhelming pain and sickness.

Heat

The heat was killing me today. Going into my car is complete torture. Wearing the collar in the car makes it even harder to stop sweating. I just get overheated so easily. And then I went inside a building, then back out to the car several times. Those changes in temperature really cause complete exhaustion. I barely made it home. The drive home was a little rough, cause I was really losing alertness. Since then, my headache has just been building and building. And my body hasn't been able to reach a comfortable temperature since then.

This weekend was fun, but exhausting. On Saturday, we went to a Hawaiian restaurant and show to celebrate my grandparents' 55th wedding anniversary. On Sunday, we went to dinner for Father's Day. It was a nice weekend. I'm just all out of energy to type about it. The words are not coming to me today.

Home alone

I'm home alone on a Friday night, and I'm actually fine with it. I think that's a good sign for my self esteem. Although it might just mean that I'm becoming agoraphobic, due to my dislike of crowds, my fatigue, and my need to be horizontal most of the time. Nonetheless, I'm sure in a less secure time in my life, or when I'm feeling sad about my life, I wouldn't be happy to have a night to myself.

It was a rough, fatigued day, because it was hot and humid, and our air conditioning didn't seem to be cooling the house very well. It sounded like it was running, but nothing was actually coming out of the big vents in the hall.

I'm officially not allowed to spend any more money for a long time. The only big thing I've bought this month is my gps device, the delivery of which I'm anxiously awaiting. I think it was a good purchase, because it comes with traffic updates with no ongoing fees. That should really help me in planning my route up to Milwaukee each week starting in August! I know that traffic will be key to making the drive short enough to survive. So, it wasn't a bad purchase. But add that to a few medications, new contacts, and a few "non-essential" purchases, and you get one scary credit-card bill!

Well, I missed dinner tonight, so I'm going to go eat a baby spinach salad. I'm not sure what else I can eat right now, only because I'm pretty nauseated.

I would love a massage tonight. I ordered the thera cane, so soon, I'll be able to see if I'm able to give myself some trigger point therapy. With the crazy rock-hard muscle spasms in my neck and shoulders and lower back, it seems like they must be contributing to this monstrous headache. My head is seriously killing me tonight...as always. But my spine is really painful tonight, too, in quite a few places. My knees are also killing me. I stood up at a store for about 20 minutes, which was a pretty stupid idea. My body is hurting all over now. But it's nice to be home and out of the rain.

I have some news: I have actually agreed to visit my cousin's chiropractor. But before you freak out, please know that I am completely against having anything in my spine cracked. No adjustments! I agreed to go with him, because he actually provides other treatments, including trigger point therapy, electric muscle stimulation, and physical rehab. However, I'm only go to meet him and see what treatment he would offer and how much it would cost. It's important to note that none of this treatment would be covered by insurance, so I probably won't be able to do anything.

Maybe the best idea would be to get a prescription for trigger point massage, which my massage therapist can't do without a specific prescription. But if she does it, it WILL be covered by insurance, completely.

Okay, need to eat. I also hope to go to sleep early tonight so I can get my schedule back on track.

The next Very Important Person: my cousin Laura

I've gotten very behind on my tributes to the very important people in my life. There are still so many to mention, but the person of the day is my cousin Laura.

My dad and Laura's mom are siblings. She is my only in-state, female cousin. And lucky for me, she's just a year and a half older than me, and we grew up just a couple towns away from each other. As kids, we would have sleep-overs pretty often. She played with Barbie's, and I played with American Girl dolls. She liked cats, and I liked dogs. (I remember there being debates along the lines of: "Cats rule! Dogs Drool!") And she liked to sleep in, while I was crazy enough to wake up at 6:00 in the morning. (Which is funny, because now she wakes up every day for a real job, while I stay in my pajamas until 3 in the afternoon.) But we made it through those drastic differences (hyperbole). In high school, we spent more time together. She even introduced me to my high school boyfriend of 2 1/2 years, Bobby.

I believe it was the summer after my junior year of high school that Laura developed a spontaneous spinal cord leak, causing intracranial hypotension and a temporary acquired chiari malformation. She was in the hospital for weeks. The doctors tested her for everything, and they never figured out what was wrong. They did attempt a spinal tap multiple times, only to find that she had zero pressure in her spinal cord. She suffered from low-pressure symptoms for quite a while. For Laura, going to a chiropractor actually helped her symptoms to resolve, thank God.

So, when I received my diagnosis a year later, Laura was the first person I called. When I had my first spinal tap, Laura was the first person I called. Even though she suffered during an acute period of illness, I know that she truly understands what it feels like to be this miserable. This year, she will be walking in the Chiari Walk, and she has been amazing at helping to get the word out.

Laura is the closest thing to a sister that I have in this life (although I have two amazing brothers and a sister-in-law that will have to be mentioned in a later post). I know that we will be close for our whole lives. I am so grateful for her constant support and compassion. And considering that I had to steal this picture from her facebook page, we definitely haven't spent enough time together lately. I hope I don't take her for granted. And yes, this could be seen as my passive-aggressive way of apologizing for dismissing the chiropractor recommendation so quickly. I know you just want what's best for me, and I think you are amazing. Love you cuz!

Symptom Watch and Alternative Treatments

My head is killing me. It gets blurry at the top of the pain scale, but I'll call this headache an 8.
My heart and breathing have been bad on and off.
I actually don't have a stomach ache today (which leads me to be more confused about whether or not I should see a GI doctor, since my symptoms are intermittent).
My knees have been really sore. The fibulas have been popping out often, which is probably the cause of the pain.
My muscles are insanely tight. I have large "marbles" of muscle throughout my neck, shoulders, and lower back.
The fatigue has been keeping me in bed for 12 hours nightly, and then on the couch for at least another 6 hours EVERY DAY!
For the hours that I am upright, I have to wear my neck collar all the time. It is the only thing that keeps the symptoms from becoming unbearable, most of the time. If I had a CTO that fit or a traction device that was made for my size, it might also help with symptom alleviation.
I have difficulty sleeping at night. I have trouble falling asleep. Then I wake up after about 4 hours, and I'm wide awake. I cannot fall back asleep by any method other than medication. My whole life, I was successful using progressive muscle relaxation to fall asleep. But that doesn't work for this kind of awake. I feel unnaturally wide awake...especially knowing how much sleep my body requires.
And my head pain is horrible! Did I mention that? So much pain. It hurts through the back of my head, my temples, the top of my head, my forehead, behind my eyes, my cheeks, and my jaw. So, pretty much everywhere.

I wanted to share a few articles about chiropractic care and Chiari. I will also include articles about cranio-sacral therapy and Chiari. Chiari is a contraindication for both of these types of treatment. Both treatments can actually make the symptoms of Chiari worse. I believe that most practitioners mean well when they use these therapies to try to help Chiari patients. They simply are not adequately trained or equipped to improve the situation. And the treatments they have to offer are not safe for those with fragile cranio-vertebral junctions and CSF pressure sensitivity.

http://www.chirobase.org/17QA/chiari.html

http://www.pressenter.com/~chip/chiro-nono.htm

http://jnnp.bmj.com/cgi/content/extract/70/6/816

http://www.pressenter.com/~wacma/chiro.htm

http://www.quackwatch.com/01QuackeryRelatedTopics/chirostroke.html

http://www.quackwatch.com/01QuackeryRelatedTopics/cranial.html

http://www.massagetoday.com/mpacms/mt/article.php?id=13387

However, massage therapy can be helpful. I do get massages, and they do provide some amount of relief. It is just very temporary relief. I would probably experience less pain if I had daily massages, but obviously, that isn't a feasible option. I did read about something that has helped a fellow Chiarian to relieve the terrible knots of muscle. It is called a Thera Cane. It is a tool that maximizes leverage to allow for beneficial self-massage of "hard, knotted trigger-points". I'm considering buying it, although I just feel that I can't spend any money right now. (I recently bought a GPS for my car, some more salt pills, and new daily contacts. My bank account is a bit depleted.)

Also, the neurologist that I am going to see next month is part of a group called "Integrative Pain Medicine". They believe in the use of both medical and holistic treatments for the management of chronic pain conditions. I hope they can come up with something to help me survive until surgery.

I'm also concerned (although this is all based on hearsay). I've read about multiple patients now that were scheduled for Cranio-Cervical Fusion surgery, and upon completing osteoporosis treatment, it was found that surgery is no longer an option, due to some amount of bony fusion between C-1 and the skull having formed. The problem: whatever kind of fusion is forming in these patients, it is not fusing them in the needed extracted position. Only surgery could do that. Something seems to have gone awry at TCI. (Again, keep in mind that I don't have any real evidence of this.) Dr. B doesn't seem like himself. He is no longer promoting surgeries for which he used to advocate so strongly. I truly hope this doesn't happen to me. If anything, maybe my conservative treatment for osteopenia will prevent any improper bony fusion.

I just have my whole future wrapped up in this surgery. I can't move into the next stage in my life until I have this surgery. I just can't wait. I don't know how to wait any longer. Not when my body is torturing me daily.

I've been watching "Mystery Diagnosis" daily since it became summer rerun season. I relate so much with the suffering patients; but when they are diagnosed and treated, I get jealous. These people are very unfortunate in the medical world, because they've gone so long without diagnosis. But on this show, most patients return to their normal life after treatment. It just seems so unfair that with my conditions, people suffer endlessly. So many are enduring so much pain right now. Please keep my Chiari friends in mind, including Kristen, Hannah, and Hannah!

Symptoms continue...

So, I haven't slept well for a while. I'm not sure what to do about it.

I'm also a little concerned about seeing a new doctor. I have to figure out what kind of information to bring to him about my multiple conditions and symptoms. He'll have to get a complete symptom list, to say the least.

Tonight, I'm afraid that I won't be able to fall asleep again. And even when I do, I know I won't stay asleep.

My muscles are so tense. There are marbles throughout my neck, shoulders, and back. I could use some mega deep-tissue massage. I'm trying to stretch and do some self-massage, but it is so freaking tight!

And my headache is terrible. Really so painful.

Symptom Watch

Sunday: We had visitors to our apartment during the day. It was really fun! I saw my friend Heather. We had a great time catching up, and she brought me books to borrow! Then we had Julie and Claire over for dinner. Gus cooked. I actually stayed awake all day.

I've been paying for it since then. Sunday night, I did not sleep well at all. Monday, during the day, I slept most of the time. I accomplished essentially nothing.

Monday night, I had a lot of trouble sleeping again during the overnight hours. So, I couldn't get out of bed until noon today. And I'm still tired now, and I haven't been able to get up. But I'm off to the bath to get ready for work, no matter how hard it is.

I did get an appointment scheduled with Dr. Wilkin, a neurologist in a group called "Integrative Pain Medicine". Hopefully he'll have something new to try.

I also contacted the hospital in New York, and they said that they are in the process of collecting my surgical reports.

Lastly, I still need to consider a GI doctor, for my confusing digestive problems.

Off to the bath.

Enough

Okay. My pain has been at a consistently high level for too long. I worry most about how it is affecting my loved ones and our relationships. I'm not the person I want to be. And I know how tiring it can be to see me sick and in pain all the time.

So, even though I've seen multiple pain doctors in the past, and they have all run out of ideas for me, I'm going to try again. I have had a couple of recommendations. One is a neurologist in Schaumburg that has experience with Chiari patients, and is apparently not afraid of pain medication. (Dr. Lawrence Wilkin) The other is a pain management specialist in Morton Grove that deals with pain related to spinal fusions quite aggressively. (Dr. Howard Konowitz)

I'm not sure how to decide which doctor to try first.

I also need to arrange an appointment with a gastroenterologist, even though my symptoms are very intermittent and unpredictable, so probably hard to diagnose.

I just want to be a better person. And maybe I could feel even a tiny bit better while I'm at it.

Irritable

So, unfortunately, yesterday was another bad day. Most of the day, I was just so low on energy that I was a bit like an angry zombie. It was another bad mood day, and again, I was really irritable toward my poor mom and boyfriend. I wish I could be in a good mood all the time, or at least more of the time. But I just don’t seem to be handling my symptoms very well lately. It’s so overwhelming. And it can make me mean. I know it is wearing on them, as even the most patient people have their limits. And they are just as frustrated with my worsening symptoms as I am.

I’m incredibly frustrated by the postponement of my surgery for another 6+ months. I’m even more concerned about my friend Hannah. She had her fusion revision scheduled for next week. Drs. Milhorat and Bolognese agreed that she needed the surgery. But apparently, the newly-appointed director of The Chiari Institute informed her that her surgery was cancelled, because it wouldn’t help her, so it was unnecessary. WHAT? I have no idea who this guy is, where he came from, or if he knows what he’s talking about. But how does he have the power to overrule a decision made by the most experienced doctors there? I don’t have any more information about this situation, but I will post if I learn more.

This certainly makes me wonder if having my fusion revision at The Chiari Institute will even remain a possibility for me. If her surgery is now considered "unnecessary", how do we know that my surgery won't also be deemed "unnecessary"? I hope that Dr. Bolognese will somehow be able to rectify the situation. Really, he needs to be promoted to the director position. He has earned that position with his experience. He needs a new partner with Chiari experience to help him out with the overwhelming number of surgeries that need to be done, but he should be in charge. I don’t see how any doctor coming in from the outside would be able to fill Dr. M’s position. Dr. B is the only one with enough experience to be making the major decisions.

In any case, I am relieved that I am in the process of contacting Dr. Menezes. I have everything together except for the surgical reports that I haven’t yet received from the hospital in New York. On Monday, I’m going to have to call the hospital and see if it is in process. Hopefully, that will be able to be sent out soon. I’d really like to know if I will have Dr. Menezes as an option for this surgery. It would be reassuring at this point, even though he’s never seen the inside of my head, which makes me uncomfortable.

Last night was another night when my body made it very clear how much I need this surgery. On the way home from work, I developed terrible stomach cramps. The pain was so intense that I couldn’t breathe normally. I went ahead and ate a bit of my Subway sandwich, after taking a peppermint oil capsule and a digestive enzyme. That pain actually eased up, for once. Unfortunately, it was immediately replaced with an “exploding head”. I had the headache all day, but it really worsened in the evening. The pain was unbearable for several hours, during which I turned into an irritable, cranky, PMS-ing witch.

Manual traction helped (lifting my head with my hands), so I tried real traction. First, I tried the Pronex. Unfortunately, it not only squeezes my ears uncomfortably; it also seems to press right against the rods in my skull. It just hurt too much for me to feel any relief. Then, I tried the inflatable traction. Neither of these fit me quite right, because my neck is smaller than the recommended sizes for each device. When I was sitting up, the inflatable traction caused too much jaw pain. (Does this sound a little like Goldilocks to you?) Then, I tried it laying flat. Unfortunately, in that position, the back of the device presses into the hole in my skull, which blocks off the flow of cerebro-spinal fluid, causing a pressure build-up. This is due to the fact that my craniectomy area is rather large, and only covered with skin. A titanium mesh plate would normally be inserted to cover the area, but there wasn’t room for it. So it was determined that it would be safe to leave it uncovered. It’s mostly okay, but at times, there are problems with having an area of your brain exposed. For example, if you just tap the area with your finger, it sounds like you are tapping a microphone inside my skull. Weird...

Eventually, I went ahead and took a Vicodin and an Ambien last night. The Vicodin doesn't actually relieve the pain, but it does somehow make it more bearable. It's hard to explain, but it's the truth. And the Ambien failed. I was awake for at least two hours before I fell asleep. Wonderful.

Today, my headache is not as bad as last night, but not much better, either. I'd say last night I reached a 9, and this morning I'm around a 7. Thankfully, I don't have anything that needs to get done today. So, I'll just lie here, watching the time pass me by. I do wish I could make more out of this life. But at this point, all I can do is try to endure it, which has been my approach to much of my life. Learn to cope. I've been learning since I first developed symptoms in junior high. So many days have been lost to pain. So many opportunities have been missed to sickness. This hasn't just been one sick year of my life. After all this time, it IS my life. Every day that I lie in bed, I feel that I am wasting precious years of my life. I've learned that each day is something to survive. Every day presents a new battle to fight. But there is no point in grieving over the lost years. Only acceptance is meaningful. I look forward to a time when I'll be able to live more fully.

So, here’s to hoping for a better weekend, for my mom’s and boyfriend’s sake. I also hope that my Chiari friends have a better weekend; especially Hannah, whose surgery has been postponed indefinitely (I am so saddened for you, Hannah.), and Kristen, who’s symptoms of cranial settling are worsening, just like mine (I'm sorry you have to feel this way, too!).

Profound fatigue

Yesterday, I had debilitating fatigue all day. I was forced to sleep or rest the entire day (even on 200 mg Provigil). It is so frustrating. But I am very grateful that the headache intensity has dialed back down to the usual level. I slept for 12 hours last night, and the fatigue is back today. I have to find a way to take a bath and go to teach a lesson. Searching for any ounce of energy in my weighed-down body.

I am so honored by the number of people interested in the Chiari Walk this year. The walk will be September 26th at 31 sites across the country, including one in Palatine, Illinois. I'll include the information here for anyone else interested:

The national walk information page: http://www.conquerchiari.org/walk%2009/Walk%2009%20General%20Info.htm

List of walk sites: http://www.conquerchiari.org/walk%2009/Walk%2009%20List%20of%20Sites.htm

Printable flyer for the Palatine, Illinois walk: http://www.conquerchiari.org/walk%2009/flyers%2009/PALATINE-IL%20FLYER.pdf

Walker registration form: https://www.conquerchiari.org/ccwaa09/ccwaa_register.asp
*If you are registering for the Palatine walk, you can choose to join my team, which is called "Courageous Carolyn".

Thank you so much to my friend Jennifer for creating a team in my honor.

Torture headache...and late-night thoughts

Hasn't let up all day. Medication barely touches it, but I have to try something. The inflatable traction helps a bit, but only while my head is lifted pretty severely, to the point that my jaw is tightly clenched. I had Gus do manual traction, and all of my pain went away. But that's very temporary, too. And as soon as he lets go, I feel like I am being crushed. At least I know that re-fusing me in the right place will take away all of this pain. I just have to find a way to survive. Today was hell. So, so much pain. I doubt that I will be able to sleep much. Maybe a sleeping pill combined with a pain pill will give me some tiny break from this agony.

The manual traction really shows me how much pain I am living with. There is a constant heavy weight on top of my head, just crushing me. There's a feeling of sickness inside my core that goes away with my head in the right position. There's pain through my face and a feeling of pressure throughout my skull that goes away. I can't imagine what my life would be like if all of these symptoms that are such a constant part of my life could be relieved. I have an idea what it would feel like. Manual traction gives me a glimpse of having a totally different body. It feels like anything would be possible if I could just get fused in that perfect spot. Of course, there is always the fear that it won't work...the fear that I will be just another example of a failed fusion surgery. I know that surgery failing is a possibility, and that I may have this pain for a lifetime. But I have to believe that there is a chance that it will work...a chance that I will be different. Without that hope, without that light at the end of the tunnel, there's no reason for me to persist. I just don't know how to go on living like this. How to continue working??? Functioning? Getting out of bed, ever?

How to not cry every moment of my life, knowing how much I've missed out on, how much I will miss out on. Knowing that I'll never know what my life could have been; who I could have become. Knowing that I will not be able to have my own child...to pass on a part of myself and create a new person. That's a very big deal to me, considering how much I am like my mom...how important she is in my life. Knowing that the possibility of having a child of my own doesn't exist. My broken body doesn't have enough to offer. It wouldn't be able to survive pregnancy. And even if it could, my diseased genes should not be passed on. Who knows if I will ever have what it takes to care for any child, even if it is not biologically mine? How empty would my life be? I love my dogs more than most people, but that isn't the kind of fulfillment I need from my life. I need a bigger meaning for my life. Someone to teach the things that I'm learning. But it isn't a dream of mine to teach my own child how to deal with these horrible illnesses. I won't pass this evil on. This disease must be stopped. And the best way I can think of is to not pass on my genes.

I do have hope that the next surgery will do it. I just have to figure out how to get there...how to survive that long, how to make my future happen. How do I face a single more day like this? I don't want to wake up. I want to go to sleep...the kind of sleep where you can get far enough away from your pain...where you get a break. But I don't want to wake up anymore. Too much pain. Too much straining of my body, watching it deteriorate and waste away. It gets harder and harder to do anything, as my body gets more and more out of shape, my muscles waste away, and my veins get worse and worse at pumping my blood back to my brain. I don't know how to keep trying. And yet, I really have no alternative. It's not courage. It's that I wasn't given a choice in this matter. I used to think death was a reasonable alternative, but I now understand that it's not an option. It doesn't even feel fair at times. I am trapped in this life...in this damaged body. Shouldn't I be allowed to choose death? But no, I have too many people to live for. I can't abandon them. It feels like an obligation at times...like I'm being forced to keep living this life. But I am not suicidal anymore. I promise you that. I'm simply stating that I do not have any option but to continue living, to keep trying, no matter how terribly hard it gets. But that is not bravery on my part. It's simply having no way out of my situation.

I am incredibly grateful to not be alone in this constant, daily battle. Without the unfailing support of my loved ones, I would have given up many times over. In that way, I am the luckiest girl in the world. I am truly blessed. I hope to continue to share about my closest supporters in future posts. I am also grateful to have a place to release my negative, depressing thoughts. It helps to keep me sane. I am humbled that anyone reads this, and even more humbled that people are not scared away by my true feelings.

Crazy headache

I woke up with this headache, and it is insane. I've been incapacitated all day. I have trouble choosing pain numbers, but I feel like this is about an 8. And I've had it since I woke up this morning. If I had this headache all the time, I would never leave the house. I'm very grateful that it isn't always this intense. Please fix me already!!! Whatever you have to do. I'll take it. Just fix me now!

Here's a link to a bio on Dr. Menezes, showing how well-respected and prolific he is in the medical world:
http://www.neurosurgeon.org/history/honoredGuests/bio.asp?ID=54

Bad symptoms

My head is exploding. It hurts all over. Even through my face. The pain is astoundingly intense. It really does feel like pressure pressing out around my skull: top of head, temples, and cheekbones are the worst. I also have pain throughout my body, too. The fatigue is very strong today, and the nausea is ever-present, as well. But, it is time for work. Luckily, only 2 lessons. I saw the psychiatrist today, which was altogether banal.

If only I could be having my head cut open and re-set today. Please????? I'll beg.

That's when you know you're ready for surgery: when you know what type of hell the surgery brings, and you'll do anything to get it. Then, you know it will be worth it to you. If your life is already so miserable that this outrageous surgery sounds better, then surgery is the right choice.

Depression continues, due to continuing symptoms and surgery rejection.

Good news: Gus and I put down a deposit on a new apartment, in Milwaukee. I haven't seen it yet, but I'm sure he chose the right place. It's tiny, but it has an underground garage for parking, an elevator, and central air!

Life goes on, whether or not my body is ready for it.

Symptom watch

Post nasal drip still making me cough. The coughing is driving me crazy. If my throat would just clear, I'd be fine. Until then, my chest hurts from the deep coughing. And the pressure in my head just can't take any more of it.

I have a low grade fever (99, because my "normal" is around 97). I also have my regular body aches back, but in addition, I feel bruised. My upper arms, my outer thighs, around my ribcage, and neck/throat are affected. I'm just really tender to the touch. I don't know if this is part of the mystery virus or just a random symptom. I'm done with all of my prescriptions, so I'm trying to just wait it out. Unfortunately, my body is not great at healing.

I've been in a bad mood today. I'm upset about my surgery, definitely. But today was just a bad mood day. Those days just happen. I just acknowledged the mood, and tried not to take it out on anyone.

People have trouble understanding my need for the walker, but it is simply an assistive device to help with vertigo and sudden loss of balance. No, my legs are not too weak to walk, and I do not plan on making them any weaker. I just want to stop falling down everywhere and clinging to walls.

Why the delay?

Post nasal drip is giving me the feeling that I need to cough constantly. So my head is still killing me from the excessive coughing. Ugh.

In March 2008, I was diagnosed with mild osteopenia. I was told it would take about 12 months of treatment to prepare my bones for revision surgery. So, I went to an endocrinologist, seeking treatment for my weakening bones. Unfortunately, this endocrinologist thought that I was crazy, asking for strong medications for having bones that were simply on the low side of normal density. After one appointment, this doctor refused to see me ever again or treat me.

In June 2008, I had my de-tethering surgery, which just felt like a stupid stop along the way to recovery. So, I made it through that surgery, and as soon as physically possible, I was out seeking treatment for my bones again. I was even more convinced of the necessity of the surgery after my Invasive Cervical Traction. In this procedure, they lifted my skull off my spine, and showed that many of my symptoms will be instantly relieved. Unfortunately, it wasn't until December of 2008 that I found a doctor willing to treat my osteopenia.

Even then, my doctor is using "conservative" methods to treat my bones. So, it's not certain whether or not my bones will be ready in time for my next DEXA scan, in 2010.

So, that is the reason for the delay in my revision surgery, which was supposed to take place this summer (like, right now). Instead, it's much more likely that I will have to wait a whole extra year until surgery. I'll aim for spring 2010, if possible. It's just hard to imagine being sick so much longer than I need to. It's also hard to imagine that I could be getting this surgery over with right now, but instead, I will have to anxiously await surgery for quite a bit longer.

Answer to the question: Blame the endocrinologist.

Bronchitis and Lots of News

So, I'm still working things out. Today is the first day that I've had no fever. But I have a nagging cough that is very deep in my chest. So, it seems that it has turned into bronchitis now. I don't have any more prescriptions to deal with it, so I'm sticking with maximum strength Mucinex and maximum strength Robitussin. They don't do much. I just have to hope that it gets better soon.

As far as my other symptoms go, the coughing is still making my headache worse. The pressure is pretty bad. I could use some traction to relieve the head pain. I also need a massage, since I missed it last week. I've also been very tired all day. Very, very tired. I slept 14 hours last night, and I feel like I could do it again right now. I used my walker for the first time today, and it really helped me deal with the balance problems. So, I'm a big fan of the walker.

I'm a bit concerned about summer work, because my schedule is not going to be regular, and I won't have regular income.

After sending a second email, I did hear back from Dr. B, through June. Unfortunately, Dr. B says that my bone quality is not yet ready for a revision surgery. He blames this on my endocrinologist avoiding the use of Forteo, which is the most effective bone-builder, according to some. He says that waiting until 2010 for my next DEXA scan should be fine. Probably, the longer I wait, the better the chance of having dense enough bones show up in the scan. So this means, NO SURGERY THIS YEAR. I'm just going to have to get used to that, I guess. Have to adjust to staying sick a lot longer than I'd hoped.

There's a really interesting article I found on POTS. It's pretty good at describing the lifestyle:
http://www.bendbulletin.com/apps/pbcs.dll/article?AID=%2F20090531%2FNEWS0107%2F905310408%2F1041&nav_category

Here's an interesting article on the reasons why Chiari surgeries fail:
http://www.conquerchiari.org/subs%20only/Volume%205/Issue%205(4)/Symposium%20Failed%20Surgery%205(4).asp

The most exciting news: There is a Conquer Chiari Walk Across America site in Palatine again this year. The walk will be on Saturday, September 26th. All the information can be found here: http://www.conquerchiari.org/walk%2009/Walk%2009%20General%20Info.htm