Wednesday, November 29, 2006

New to SharingOurDays -- Living with Epilepsy

A reader requested that we add a section for epilepsy-related blogs. There aren't as many out there as I would have expected, but I've found some good ones, and here is one from Emeriol. You have to wade in just a bit to get the real value of it, but I found it well worth my time.

- sean

This post is from November 20, 2006...

No more seizures
I have not had any more tonic-clonic seizures since the last one I had at work. Since then, I printed out about 200 seizure first-aid cards and the director had them passed out to all of our staff. Hopefully if I have another one, my co-workers will be better prepared to take care of me. That, and another 200 people will have received detailed information about taking care of people who have sizures. I'm sure they will run into more than just me...

Monday, November 27, 2006

Link List at Bottom of Page

Hey Y'all,

I'm not sure what has happened, but all of our site links have moved to the bottom of the page. I've probably screwed something up and will try to figure it out tonight. Until I do, just scan down to the bottom of the page for all links.

Sorry for the inconvenience.

- sean

Reader Suggestion -- Bomb in My Belly (Cancer)

This cancer blog was suggested by Lynne Dahlborg (Life Changing Cancer -- and can be kind of sad, but extremely well written and thoughtful, not to mention very funny at times. The writer is Louise Anonymous and I think I may love her just a little bit.

Thank you so much for passing this on, Lynne!

- sean

This excerpt is from November 23...


So the online discussion took place today. I'll talk about that another time.

I also had my CT scan today. (Yes, the technician asked if I might be pregnant; I politely told him I had a hysterectomy). Radiant1 posted a comment in response to this postscript explaining that technicians are required to ask the pregnancy question, and asked him- (or her-) self how I would prefer techs handle the question. I understand that it needs to be asked -- better I be affronted for a moment than have someone expose her fetus to radiation. What bothers me is when the tech has clearly read my file and requisition, both of which clearly state that I am a 26-year old female who is having a pelvic CT for ovarian cancer follow-up. Today the tech knew the name of my oncologist, that I hadn't had blood work to test my kidney and liver function, and that I had had contrast pelvic CT scans in the past. Ding ding ding! What does that suggest? That perhaps as a gynaecological cancer patient I've had a hysterectomy?

I think I would prefer that instead of asking the pregnancy question of gyn/onc patients, techs ask "Have you had a hysterectomy?" And if the answer is no, then they can ask "Is there any chance you may be pregnant?" Obviously if they don't know someone is a gyn/onc patient, then they can't tiptoe around the pregnancy question. Hell, in the end I don't know how much I care about the whole thing. It bothers me, yes. But it certainly shouldn't drive me crazy. They're only doing their job, after all.

Saturday, November 25, 2006

New to SharingOurDays -- Another Dose! (Hodgkins Lymphoma)

Hey Y'all,

Here's a blog from Jeff, who has Hodgkins Lymphoma. What I particularly like is that Jeff has a huge nework of supporters who contribute to his blog on a regular basis. If we all had a network like this, life would be a lot easier.

- sean

"If you fail to plan, you plan to fail"

After last week's bombshell, this week has been spent developing a plan of action for handling my relapse. I ended up not getting my port placed on Tuesday, since we wanted to hammer our the exact details of treatment before geting carried away.

Basically, my PET shows 4 or so cancerous masses in various locations around my chest, and some activity in my neck (where presumably this all started). My doctor, Jeffrey Wolf, Craig Moskowitz from Sloan-Kettering in NY, Stephen Foreman from City of Hope in LA, Michael Kaplan from Stanford, and Patrick Swift from here in Berkeley all have agreed on the same treatment.

Here's the low down:

Month 1: 2 cycles of chemotherapy, each cycle will be 3 straight days of chemo. I'll be in the hospital since it's a tough couple of days on the body. I'll have a week, possibly 2, off, then a second round. The regimen is called ICE for the type of drugs used (ifosfamide, carboplatin, etoposide).

Month 2: 4 weeks of radiation. A half-hour or so each day they fire up the X-Ray machine, and aim it straight at anything that's left after the chemo.

Month 3: A Stem-Cell Transplant (also known as a bone marrow transplant). This is pretty rude procedure meant to annihalate any remaining cancer left in my body. So there it is, it appears that the next couple months are all planned out pretty well. I need to spend the next week or so getting things in order, and figuring out what I'm going to do about school. I'm also considering continuing the treatment back in NY, possibly at Sloan-Kettering, or someplace closer to Albany. Those exact details need to be hammered out, but in the meantime I'm planning on starting the first rounds of treatment here, since regardless of the location, the treatment will be the same. I head in to the hospital Monday morning, they'll place my port (permanent IV), then do a quick biopsy to double check that the cancer is still hodgkins.

Phew, what a week!


Thursday, November 23, 2006

New to SharingOurDays -- My Experience with Hodgkins Lymphoma

Here's a great blog from Jackie about her experience with Hodgkins Lymphoma.

This excerpt is from yesterday, in its entirety...

Happy Thanksgiving

Today, Steve brought home an article from a newspaper about cancer survivors and how it affected their outlook on life. This study showed that most survivors feel that cancer changed their life and in most cases for the better. Most survivors feel stronger, have a new appreciation for life, and are driven to help others with the disease. I found it so interesting because that is how my cancer affected me. Amazing how so much good can come from something so terrible! My wish is that people who know my story and read my journal learn what I have learned from having this disease through my experiences.

When I was first diagnosed, my parent's doctor told them that in a year or two I would forget I ever had cancer. That was a silly thing to say! There is not a day that goes by when I do not think about it. I must admit that on rare occasions it makes me sad to remember all that I have been through. But usually it is with happiness that I remember this experience because of the new life it has given me. And I always look back with thanks for the gift of my life and for everyone who helped me through this time.

I want to wish everyone a Happy Thanksgiving!

Wednesday, November 22, 2006

New to SharingOurDays -- Nightmare Hall

Hey Y'all,

This one is different from any blog we've yet posted at SharingOurDays. "The Dreamer" is a long-term HIV survivor and the blog only tangentially (is that a great word or what?) relates to his condition. But he does talk about it on a fairly regular basis. We wanted to include it because The Dreamer really has a lot to say and is a pretty good writer. It brings home the point that we are so much more than just a disease, and yet that colors everything we say and do and feel.

- sean

The is an excerpt from yesterday's entry...

Techno shootout at the mall

Ahhh the retail holiday season has kicked into high gear (Bah humbug!) once againm and according to Gee Dubya Boosh the economy is going gang busters, at least for the rich it is, for the rest of the sheeple it'll be charging the plastic up to the limit once again, "we can't disappoint little Pugsley on Christmas morning."

Every store I've been in is decorated, playing holiday Muzak and has rolled out holiday merchandise for sale. I drove by a local TJ Max and there were signs in the windows advertising "Genuine iPods coming in December, limit 3 per customer." I suppose yuppies give iPods as stocking stuffers, what's a few hundred bucks when stuff like Benz's, Beemers and $20,000 $100,000 home theater systems as main gifts.

Tuesday, November 21, 2006

New to SharingOurDays -- A Pastor's Cancer Diary

This is one of my favorite blogs, yet. It is written by cancer survivor Pastor Carl Wilton and overflows with heart, humor, and thoughtfulness. The bottom line is that I just plain like him, and you will, too.

This is a short excerpt from yesterday's entry...

During my chemotherapy, I simply didn’t have time for anger. I had to marshal all my emotional resources in the service of just getting by. The reality is, I’ve probably been stuffing my anger about the cancer for some considerable time. When I received first one clean PET/CT scan report, then another (in late May and early September) that was no time for feeling angry, either. I was supposed to feel relieved (and one part of me did, of course).

So what happens to all that suppressed anger? The answer seems to be that it’s coming out, inappropriately. I find I have a short fuse, these days, for petty frustrations. Other people around me have noticed it, too (in truth, they picked up on it before I did). It’s as though there’s a little voice in my head that keeps whispering, “You shouldn’t have to put up with this nonsense: you have cancer!”

Monday, November 20, 2006

New to SharingOurDays -- My Cancer (Cancer)

Who knew that NPR has blogs on its site?!? I'm sure lots of folks, and I'm pretty excited to discover it. Leroy Sievers is a beautiful writer who is creating an incredible chronicle of his life with cancer. Man, it is definitely worth our time.

The following excerpt is from November 16...

The Holidays Have Begun

Well, the holidays have clearly begun. Personally, I think it should be a crime to put up Christmas decorations or play Christmas carols until the day after Thanksgiving, but clearly all the retailers feel differently. There was Christmas stuff up before Halloween. That should be a felony.

The holidays are always a time for reflection. Last year at Thanksgiving, I didn't know that there were tumors growing in my body. I was going about my life in blissful ignorance. This year is different in so many ways, some obvious, some not. In many ways, I have a lot more to be thankful for: old friends who have stood by me in the bleakest times and new friends who already feel like old friends. I have learned many lessons and been reminded of things that I knew, but had maybe forgotten. And I have all of you, the family that has grown up around this site.

Of course, there is one sad thought floating over the holidays. I think it's probably in the mind of every cancer patient. Will I be alive for the next Thanksgiving or Christmas or New Year's? Who knows? The sad truth is that some of us probably won't be here next year. That's just the way it goes. But that shouldn't take away from this season.

As I've said before, I've postponed my next chemo until after Thanksgiving, so I expect my body and my appetite to be ready for dinner. That night, am I going to be worried about whether it will be my last Thanksgiving? Nope. And I think I will have that second piece of pie -- and yes, I will have whipped cream on it, too.

Sunday, November 19, 2006

New to SharingOurDays -- The Assertive Cancer Patient (Cancer)

Boy, this is a great one. It is written by Jeanne Sather, a professional writer who has lived through cancer and has a lot to offer anyone living with an ongoing health condition.

Excerpted from the bio on Jeanne's blog...

Jeanne Sather, author of The Assertive Cancer Patient, is an outspoken advocate for the cancer patient’s point of view. She has written about taking part in clinical trials, living with incurable cancer, “pink ribbon” marketing run amok, strategies for getting through cancer treatment, how to help when a friend has cancer, and much more.

Jeanne has also been interviewed by major newspapers on such topics as her firing while in cancer treatment, writing your own obituary, and teaching doctors how to say goodbye to dying patients. Jeanne coined the term “MIA doctors” to refer to doctors, in particular oncologists, who disappear when their patients are dying.

Jeanne began her career as a journalist, working for newspapers, magazines, and wire services, including Newsweek in Tokyo, Reuters in Seattle, MSN (also in Seattle), and a number of other publications.

Saturday, November 18, 2006

New to SharingOurDays -- Life Changing Cancer (Cancer)

The following post was taken from Monday, November 13, 2006. The actual post is longer, and I encourage you to read it. The author, Lynne Dahlborg, is a good, thoughtful writer.

Love, Cancer and Vulnerability

Lately, I've been thinking about the vulnerability of loving a person with cancer. Like many folks who are diagnosed with cancer, after my gallbladder cancer diagnosis I found that some of the folks in my life drew closer, and some pulled away. Those who drew closer have provided amazing emotional, physical, spiritual support for me. And those who have withdrawn are suddenly not in touch and not connected. I don't know whether any of my friends in the second group made a conscious decision to withdraw, or if it just happened somehow. And I don't know how many of my friends in the first group, those who have moved closer to me, have thought about the consequences of their closeness.

In the 1980s, two friends of mine were killed while vacationing in the Caribbean. Murdered on the beach, those of us left behind felt shock and horror at their sudden death. This may sound like an obvious observation, but their deaths brought me the realization that when we love someone, two things can happen. They can leave us, through death or dissolution of the relationship, or we can leave them, through our death or a decision to end the relationship. Those are the options, really. It was the first time I was able to articulate the true vulnerability of loving someone, whether it's a friend, an intimate partner or a family member.

In the past, I have been one who withdrew after a cancer diagnosis. My friend Willa was diagnosed with lung cancer almost three years ago, and soon after, we spent a wonderful afternoon eating and talking and sharing stories. She was determined to fight her cancer, and seemed convinced she would win the fight against the cancer. I left that wonderful day with a strong intuitive sense that she would not survive the cancer, and then I had to decide whether to be with her, loving her, but feeling strongly she would not survive, or whether it was better for me to withdraw. I did withdraw, except through cards and emails and phone calls. I didn't see her again before her death in May of 2005. Given that situation again, with my own experience, I would not withdraw, but I would need to decide how to talk with her about my own feelings about her illness. It's tricky.

Friday, November 17, 2006

New to SharingOurDays -- Parkinson's Straight from the Horse's Mouth

This blog is from Barbara Waters in New Mexico. She can be angry, funny, vulnerable. Always very real. It is definitely worth a read.

This excerpt is from Saturday, September 30, 2006...

Big Brother Is Watching

The hounds of hell are always snapping at your heels when you have PD. Worst of all are the unceasing side-effects, like the bronchitis I've been battling since my birthday on September 26. My gift was escaping pneumonia this time around. Second worst is constantly being harrassed by the Medical System. My two health aides reported my eating out during Hazel's visit as well as my weekly visits to the beauty parlor. Now I'm being dropped from their Medicare services and coverage. Look, folks! The only Wonder Woman ever to be cured of Parkinson's Disease. She tries to walk. She talks. She thinks. She eats. She has clean hair! Step right up and see her in her cage. Just fifty cents!

Thursday, November 16, 2006

New to Sharing Our Days -- Sean's Blog, MS Cycling Saga

Hey Y'all!

It is a little insane to start two projects so closely together -- SharingOurDays and this other blog. But that's just how it has worked out. For a while now, I've been moving toward making some sort of grand gesture in the name of better living with MS, seeking to provide some inspiration for folks and maybe raising a little money.

First, I thouight about walking from one end of Missouri, where I live, to the other. That idea began to fall away when one of my knees -- both are bad -- started to hurt. Yes, I'm kind of a wuss. However, not one to just throw in the towel, I decided to try biking instead of walking. So far, that is working out pretty well.

Since I had figured the walk would take somewhere between 14 and 21 days, I decided to stick to that timeframe, which means the trip can be a much greater distance. After a good bit of thought, I decided to completely give in to my tendency toward the grand -- my psychologist mother likes to "joke" that I suffer from delusions of grandeur. So I'm going to New York City. Yep, I'm calling it "Missouri to Manahattan for Multiple Sclerosis."

That's right, a fat guy with MS is going to spend the next several months training for a 1500 mile bicycle ride. Hopefully I'll raise some money, all of which will go to the National MS Society. Hopefully I'll actually make it.

Please join me at for daily updates and we'll find out together.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays

Wednesday, November 15, 2006

New to SharingOurDays -- The Multiple Sclerosis Companion

This entry is from November 2, 2006. Check it out...

Post Mortem on a Wedding?

Can we actually say that? How about a "wrap-up?"The wedding weekend is over and I am finally feeling unwell. We knew it was coming. The elation has worn off and the return to the rest of my vacation was a let-down.How can that last sentence make any sense? As a life-long student of language and cultures, it is a very specifically medical phenomenon. A Multiple Sclerosis phenomenon. The stress was masked by the emotional high, but it was there and doing its damage.

Yes, I am serenely happy to have added my daughter's love to our family. PappaDog is a great guy and we feel blessed. But we welcomed him ages ago; he's always been welcome in our home.

Yes, the ceremony and reception went well, exceptionally so. But they cost a fortune (for us and our kids) and now we all must adjust our finances, that were already overloaded, and Christmas is pretty much shot. Money-wise.

Yesterday I began to collect the clues of the cost to my physical and mental health. My out-going emails are getting mixed up, and I am simply not going to answer any for a while. The phone makes me jump, and I can't hear callers when I answer. A small, nagging headache points up the painful electricity at the back of my neck. I am literally dotted with tiny hives from the change in diet and a medicine patch is creating one big red rash.

My immediate boss, the one who writes the comics column, wisely insisted I take a week to prepare and a week to recover from the festivities. But not working makes me anxious. About keeping my job, about paying the bills, about dealing with Husband RJ, because I am underfoot at times I'm usually at work. Even about the blogs and my video games. Geez Louise!

Guess I'll go for a walk and contemplate the season. It's bright and sunny and warm. And I'll occupy my mind with counting blessings. That should tie me up the rest of the day.

See? I'll survive.Just wished I felt well. Not feeling well is leaving me exhausted and weepy, when I should be still celebrating. I want to still be celebrating.

Tuesday, November 14, 2006

SharingOurDays gets a new URL, keeps old one

Hey Y'all!

First of all, let me say thanks to everyone who has visited and continues to visit We've only been up for a few weeks, but we've had new visitors almost every day. It is pretty exciting, to be honest. Running this blog, I get to read some pretty amazing stories, and feel as though I'm getting to know people of every kind, all around the world. Thank you for sharing that experience with me.

Second, I'd like to announce that folks can now find us at The old Blogspot URL still works, too, but now we have an easier way to get here and tell others how to get here.Take care, and please keep sharing your stories.

- sean

Sean Spence

MS Advocate & Founder, SharingOurDays

Monday, November 13, 2006

New to SharingOurDays -- At Least It's a "Good" Cancer (Breast Cancer)


For much of my life, I've been relatively glad that I haven't won (or played) the lottery. That's right. It always seemed to me that I had pretty darned good luck, but in a mild way; and I worried that any exceptional good luck (like a multimillion jackpot) would have to be offset by a commensurately horrible experience.As you can imagine, since March 13, I've been thinking that now is a fine time to start playing the lottery.

My diagnosis was a piece of really crappy luck. And everything that has happened as a consequence is stuff that I would happily forego, if only I didn't have to have this diagnosis. And yet, it turns out that the luck baseline changes once the diagnosis is here. Although it's always sounded ludicrous to me that flood victims, for example, praise God for getting them through the flood alive (I think, shouldn't you be pissed at God for sending you a flood??), now I understand. A horror strikes, and you don't get to use your old frame anymore.

So then, I think, I've been very lucky. I was lucky that the tumor was only half the size that the doctors thought before surgery. I was lucky that there was no spread into my lymph nodes, and no metastasis. I was lucky that my veins held up to the chemo, and I never had to get a port or a pic line. I was lucky that my skin had no problems with the radiation. I was lucky with timing: we delayed the start of chemo until I finished teaching in spring, and I started teaching in fall two weeks after the end of chemo.

So I lost a summer--but I've otherwise been able to stick to the normal seasonal schedule of my life. And I was lucky that it was summer when I had to sit nauseated on the couch, since I was not expected to be anywhere by my job, and could continue getting paid without having to take formal leave--working when I could manage to. Think of the incredible luck, and luxury, of that.And I've been phenomenally lucky--in the sense of "the harder I work, the luckier I get"--because I am well insured and had planned well. Two years ago, we switched insurance plans into the most powerful and flexible PPO that USC offers. This year, I'd put extra money into our medical spending account (thinking we'd get lots of eyeglasses and physical therapy).

Also, though I didn't end up needing it, I signed up for the supplemental disability plan. All of this means that I have had virtually no financial concerns through this whole process. My out of pocket maximum for the year is just $1000, and much of that was covered by the spending account, so we've probably written less that $200 in checks so far. If I needed to go on disability, I would get something close to 6 weeks at full salary, and after that would get over 50% of my salary.

I contrast this with the experience of my aunt, who has had to go through treatment for cancer without private insurance, and who has had to forego certain treatments or certain drugs--or be told that she can't be treated with a new protocol until she gets substantially worse, because that protocol is so expensive that it can be provided for her only if her need is dire. She owes tens, if not hundreds, of thousands of dollars to her oncology hospital, and the only asset she can maintain as a result is her home.

Cancer treatment is brutal and unhappy anyway (even if I sounded chipper). When I hear other people's horror stories about insurance denials, high bills, and struggling to work throughout chemo, I feel astonished and relieved that things have been so "easy" for me. Lucky, lucky.Oh, and last week I had my first three-month check--blood tests and physical exam. I got the all clear until late January. I'm in Philadelphia at a conference, feeling energetic and healthy and fully involved in my life again. Lucky, lucky.

Sunday, November 12, 2006

New to SharingOurDays -- Dying Man's Daily Journal (Brain Tumor)

Hey Y'all,

Dealing with my MS, I don't know how many times I've said "either you laugh or you cry," and I think we all probably feel that way sometimes. I'm moved by this blog and the journal entry below, from November 9, 2006.

- sean

Joking About My Brain Tumor

I made a comment in a posting a while ago about laughing and joking around about my brain tumor. I have had several people ask how can you laugh at a brain tumor. I received a comment for sooty, who I think best summed it up. Sometimes you just have to laugh or you will cry.

Within a 12 month period I had a heart attack (my 4th), followed by a heart procedure in which a stent was placed in my heart. It was discovered I have a brain tumor. It was later discovered the tumor triggered epilepse. I was diagnosed with severe carnal tunnel in both wrists. I was diagnosed with periferal neuropathy. I was diagnosed with diabetes and some where in the middle of that I was diagnosed with the heart failure.

During that same 12 month period, our home was broken into 3 times, we were the victims of a home invasion. For my medical reasons I was forced to leave work, and we relocated to a different city, to be closer to various doctors.

All in all a pretty stressful year. It was originally with my brother Eric that the joking started. He usually picked up from my doctors appointments. It was to the point were it seemed after every appointment I was telling him, I was diagnosed with something new. First question he always asked, when I got into the car was “well what did the doctor have to say”. I need a heart procedure. Next appointment, “well what did the doctor have to say?” Brain tumor and on it went. The joking started with how I was going to have to stop going to see the doctor because every time I did, I had something new. It became almost overwelming and it was laugh or you will cry. Likely at the beginning the joking was a way of dealing with it hiding the nerves the worries. Gradually, it became more relaxed and even fun, all in a very light hearted way.

With the realization of the seriousness of my heart condition all of the other conditions seemed to just drop from sight. My tumor is slow growing and in the short haul will have minimal if any more effect on me. I will be gone before it causes any significant problems so it is like a none issue.

The main joking about the tumor comes from the questions the doctor asked shortly after my diagnosis. Conversation went something like this.

Dr. “Do you have any strong urges to do anything inappropriate”?

Me, “Huh”

Dr. “Do you ever have any urges to do anything such as urinating in public’?

Me, “NO”

Dr. “Do you ever feel the urge to expose yourself in public”?

Me, “NO”

Dr. ” Do you ever have the urge in inapporpriately touch or fondle another woman”?

Me. “NO”………. wait a minute now doc, hmm, when do you think this part might start kicking in. haha.

So I tease and get teased about partiucularly the flashing. You have to know me to really know that is something that just will not ever happen, tumor or no tumor.

A brain tumor is a very serious issue and can be a very frightening issue. I do not want to in any way minimize what others with the same condition are going through. It is just my circumstances are unique and allow for that teasing.
I really enjoy the teasing and joking. So, if you ever see me coming down the street….wearing a trench coat…..close your eyes. haha

Friday, November 10, 2006

New to SharingOurDays -- Living in the Bonus Round

Welcome to the Bonus Round. My name is Steve. I'm an AIDS survivor and this site is a personal diary. I started it back in the stone age of the Internet. I was really, really sick; stuck in bed. I needed a way to let my friends and family know how I was doing, day by day -- and to record my last thoughts before dying.

GeoCities had just come online giving out free websites. So, I created my site in the form of a diary. And soon, I was getting email from all over the world. I began to see it as a way of saying, "Look. I existed. I was here."

Online diary/blogs are not such an amazing idea these days. But back then, when the Net was new, I was one of the first. Only about 1/3 of a college class even had email. (I know because I asked once when I did a presentation.)

Well, I didn't die. In fact, I wrote a musical instead. And I survive. And people sing my songs. And now we're headed back to New York with another musical.

The diary has evolved a mixture of blog, opinion, diary entries, road trips, and (now) a backstage look at the making of our new off-Broadway musical in New York called "The Big Voice: God or Merman?."

Thursday, November 09, 2006

New to SharingOurDays -- Libbi's MS Journey

Libbi talks about all kinds of things. Entries like the one below remind us of the "little" things with which we must deal when we have ongoing health conditions.

Lazy Leg and other lovely symptoms

I have a lazy leg. Sounds a little strange, I know, but - there ya go. Strangeness is my constant companion, along with fatigue and pain."Lazy leg" refers to one of my least favorite MS symptom - the one that results in my right leg not responding appropriately when I try to do something with it that should be (pardon the pun) a no-brainer. Like, for example, walking. Or lifting my foot to step onto a curb or a stair. Or pulling on the right leg of my jeans or leggings.

This 'lazy' right leg of mine simply won't (or can't) do what it's supposed to do. So when I get dressed in the morning, I have to sit down and pull the leg up so I can put it into the leggings. I have to remember to be very careful when I'm trying to navigate on streets with sidewalks and curbs, because this 'lazy' leg will sometimes fail to raise itself high enough, and my toe will catch on the curb. And I'll lose what minimal balance I still have. And I might well fall.This is the reason I always use a cane when I leave the house; I just can't trust this damned lazy right leg of mine.It happened again this morning, when I was out on the front porch watering the plants.

The leg got a wee bit lazy and I somehow managed to trip on the doormat, and almost fall into the front door. Luckily, I still have relatively active reflexes, so I managed to put out my right hand and hold onto the door jamb (our front door is glass, and I don't want to contemplate the results of my falling into it, headlong) until I could regain my equilibrium.So there are canes stored at both front and back doors, so I won't make the mistake of going out without one.

And you thought it was a drag to remember your keys!

Tuesday, November 07, 2006

New to SharingOurDays -- NotPerfectAtAll (HIV)

"NotPerfectAtAll" is written by Dragonette, of the Netherlands, diagnosed in December of 2005 with HIV.

Here is an excerpt from October 28, 2006:
As I write here I find that it is increasingly difficult to limit myself to things that won't reveal my identity. Already if someone I know stumbled across this page and read it carefully they would know who I am. At some point I will have to stop. Maintain my privacy. But not yet. It's a compulsion. It's keeping me afloat. I have taken to writing in Word first and then extracting what I am comfortable with to this webpage, which is not the purpose of this blog for me at all, I mean, to be blunt, it was supposed to be the plastic tub next to the bed I would heave into once in a while. But I can't be too risque (risque! ha ha... I always wanted to use that word, it is a sexy cheesy Danielle Steele/Jackie Collins type of word, like allure, and evokes assosiations of daytime encounters in hotels, sunglasses crossing through the lobby and skincolored stockings and beige raincoats).

Monday, November 06, 2006

New to SharingOurDays -- MozartMovement (Parkinson's)

"MozartMovement" is written by a female Registered Nurse, diagnosed pretty recently with Parkinson's Disease. I like the way she writes. The passage below has a Christian reference or two, but I don't think non-Christian readers will find this pervasive in her journal entries or objectionable in any way. Her entries display a lot of common sense, a good connection with reality, and a poetic soul.

Here's an entry from Thursday, August 31st...


Today I was reading an article about a Parkinson's Disease treatment, and encountered the unfortunate phrase "(so-and-so) was losing her identity to Parkinson's..." Now, I've only been diagnosed since March, so my perception may be different than that of a long-term PWP (Person With Parkinson's). But regardless if I'm up in the morning and functioning as a nurse, or totally disabled in a nursing home, I will still be me! Granted, my self-image has been remodeled over the past year. Last July, high blood sugar. March, Parkinson's. May, osteoporosis. I'll admit I used to be proud of my high level of wellness, and my characteristic efficiency. Now, I have to carefully consider consumption of carbs. Walks are no longer effortless. I have to make time for tedious resistance exercises. I'm no longer able to quickly accomplish my charting at work or to cheerily pick up for others. I'm grieving the loss of the old me and inserting the new me into projected future scenarios. Truth be told, I needed to be remodeled. Christ requires humility and daily thankfulness. Things aren't perfect? More thankfulness! Some might speculate that we are dealt illnesses according to what we choose or deserve. I wouldn't have thought Parkinson's would be God's customized plan for me, in fact I can think of a lot of reasons why not. But life requires faith, regardless of our wellness level. Maybe this is God's reminder-plan for me.

Saturday, November 04, 2006

New to SharingOurDays -- Day by Day with Parkinson's

With Michael J. Fox so much in the news, we've all been learning more about Parkinson's Disease. Here's a blog I've found by a woman with both Parkinson's and a condition about which I've never heard, Peripheral Neuropathy.

- sean

Sean Spence
MS Fighter & Founder,

Friday, November 03, 2006

New to SharingOurDays -- Tim's HIV Blog

Hey Y'all!

You have to wade through just a bit to get to the heart of "Tim's HIV Blog" (under the new category to the right, "HIV/AIDS Blogs) but the wading is worth it. Tim talks a lot about "thriving with HIV" and this attitude shines through.

Tim has good advice for living long-term with HIV, such as the following passage:

For those of us who have become disabled and unable to work a daily job; we must be vigilant and watch the changes in the world today, and when energy costs keep rising, we have to be very proactive to be able to keep our way of life stable and independent if we are going to have any comfort in our private lives in say 10 years from now. For those of you who are still young and able to work; you must also be proactive and spend your money wisely so that you can also be better off in 10 years from now. It is not hopeful that things will get any better in the world, so making the right choices to keep you from becoming helpless is of the utmost importance.

Check it out.

- sean

Sean Spence
MS Fighter & Founder,

Thursday, November 02, 2006


Welcome to -- an online community for those of us living with ongoing health conditions.

If you are like me, and either have an ongoing health condition or love someone who does, then maybe you've found that sharing our stories with others like ourselves can be powerful and life-affirming.

That's the point of Our goal is to provide a central location for online journals, written by people from around the world, sharing their experiences with ongoing health conditions. Sometimes the content of this site will be sad, other times scary or happy or crazy or just whatever. Every day, right here, we will learn and laugh and cry about life and death and everything in between.

Please join us.

- Sean

Sean Spence
MS Fighter & Founder,