|
September 2007 - Posts
-
|
Regular readers will have noticed – I haven’t exactly been blogging a lot lately. I’m sure you won’t be surprised when I say a lot has been going on here.
I had such a perfect report from my trip to NIH, and yet every since I’ve been back it seems like it’s been one thing after another. Dizzy spells, bleeding sores around my stoma etc. We are so short staffed at work and each problem is more time away from the job, as well as from all the things that are important to me.
My apartment is filthy. I finally made it to the grocery store and got some healthy food, but I’ve been living on vending machines and takeout for weeks now. Obviously, that can’t be doing good things for my health, but I’ve either been sick, or in such a frantic state trying to catch up that two hours to walk to the grocery, shop, and walk home have seemed like a luxury I couldn’t afford.
Work is stressful anyway, but when you feel like you’re down in a pit, and every time you try to climb out the earth just gives way, it’s even more stressful. It’s stressful to feel as though you’re not doing a good job, but to be so frantic to get it all done that you can hardly concentrate. It’s like trying to take a sip of water from a fire hose with a tea cup. In the past, I’d have been able to work a few nights, or weekends, and pull it all out. These days, I just get too tired to do that for several weeks. I don’t know if that’s an old age thing, or an HPS thing. I do know that all these little annoying health issues aren't helping. I do know that my days of all-nighters or working 14 plus hours a day for more than a few days are over. I can’t do it.
And, frankly, that’s just the tip of the iceberg. There’s much more to the story, both at work and at home.
A long time ago I vowed to be open and share everything about my HPS experience here, with the exception of a few things that are personal to family members. I intend to keep that vow, but right now I can’t share the whole story of what’s been going on, and why I’ve been so absent. You’ve got a whiff, but in fairness to me it’s a story I want to tell in context, and so will save it until I can give the context.
I will say, however, that whether it’s thanks to the stress, perhaps aggravated by starting birth control pills to control bleeding, or thanks to something we haven’t completely figured out yet – my blood pressure became a big problem this week.
It’s been doing a worrying upward creep for a while now, and I had already scheduled an appointment with my doctor this week to talk about blood pressure medication. Those dizzy spells I’d been having started to return, and last week when I was home with ostomy issues I started to notice that my blood pressure was even higher than usual. This past weekend and week, however, it went from high to very high – at least very high for me. The dizzy spells went from these little spells to Wednesday feeling as though I couldn’t get enough air all day. My chest was pounding. It felt as though my whole body was about to spontaneously combust. It would rev up, then fall down, then go back up again.
My doctor gave me some medication for this problem (which I’ll explain in more detail later) but by that evening it seemed to be getting worse. Even as I was climbing into bed my blood pressure was sky high.
I called my doctor back, and I e-mailed Kevin and Dr. Markello. My doctor wasn’t around, but my old doctor, the one I loved so much but could never get an appointment with, happened to be in and helped me out. I ended up staying home another two days to try to get this blood pressure under control. I’m pleased to report, it is much improved this evening. I’m a bit panicked about what I’ll be walking into Monday morning since I haven’t checked my e-mail. I was afraid it would send my blood pressure back up if I was worried about work. Who am I kidding. Love it, hate it – I’m always worried about work.
Although the blood pressure is improved, I feel like a wet noodle! I’ve never had blood pressure issues like this before, but I can’t imagine living very long like that all the time. Even though my heart isn’t pounding and my chest isn’t tight, it almost feels sore or bruised. My muscles have been so tense for so many days that as they start to relax, they feel sore. I’m sure it’s partly the medication, but I get up to try to do something simple like put a load of laundry in the washer, and I feel wiped out again.
So, that’s what’s been going on with me. I do hope to catch up on some blogging. Throughout all of this, I’ve had so many things on my mind (besides the chaos that’s been going on) and I’ve greatly missed blogging. It’s therapeutic for me.
|
-
|
This week is a big week in HPSland. This coming weekend is the second annual HPS Family Conference in Puerto Rico. I can’t tell you how much I wish I was there. Just as they did last year, HPS Network Puerto Rico has done an awesome job generating media interest and putting the conference together.
It’s also an exciting conference because nearly all of our doctors from NIH will be there. That is a real testament to their commitment to us – I know it wasn’t easy to make that possible. A very special thanks to Dr. Gahl, Dr. Markello, Dr. Guchicco, Dr. Merideth and Dr. Yao for being willing to invest so much of their personal time on this project.
Kevin, our nurse practitioner, and Jose, the scheduler a.k.a translator, a.k.a problem solver (think Radar and Clinger from M.A.S.H.) have been in Puerto Rico since this past weekend. They’ve been traveling the island with Hilda, a nurse who has worked with the HPS patients at NIH for years. She retired last year and now works with us as a volunteer, but ironically, I think she’s working more hours as a retired volunteer than she did when she was fully employed at NIH. The trio, from what I hear, have been doing interviews, visiting families from house to house, etc. trying to educate people about Hermansky-Pudlak Syndrome, its risks and the research underway. (A big thank you to all of you!)
Another exciting development is that some of our HPS troupe will be visiting a medical school in San Juan on Thursday to talk to the medical students about HPS.
We are also very excited that our doctors-only evening, and the family conference on Saturday, are generating a lot of registrations from doctors. Somehow, it was worked out that the doctors will be able to receive continuing education credits for their attendance. Since they’ve got to have their credits for the year in by November, there’s been a lot of interest.
Lastly, a very special thanks to Ivette for working so hard on this conference.
I was thinking the other day about a friend of mine that was disappointed she was unable to participate in one of the trials, and another who was working on a fundraising project, and another who has connected to a newly-diagnosed family and is trying to offer some moral support, and so many others. I was thinking about how much the HPS Network is like the concept of the body of Christ. (I hope no one is offended by that comparison.)
There are no unimportant parts of the body. There are a lot of down sides to having an ultra rare disorder, but perhaps one of the up sides is that we can all gain such a sense of empowerment by playing what ever role our talents best fit. Some of us are the toes, others the legs and others the arms. We all depend on each other. Some of us are best at fundraising. Some of us are best at supporting the people who are good at fundraising. Some of us are writers and are helping to document the story of what it’s like to live with HPS. Some of us bring an astute sense of business to helping the Network run. Some of us are great at generating new ideas, while others are better at keeping track of the fine details to make a project happen. Some of us are great at being a caring, listening ear for others. Some of us are good research candidates, and others have the spiritual gifts to pray for the Network and the needs of everyone involved.
It’s neat to watch people of such a varied background, with nothing in common but a wonky gene, come together, beat the odds and make great things happen.
One quick addendum – please pray for everyone’s safe travel on this trip. I grew up around airplanes. I not afraid of flying etc. Still, the idea of more than one of our doctors on the same plane, or in the same van etc. makes me send a few extra prayers up to heaven.
|
-
|
The past two weeks haven’t exactly been the best weeks. While I’ve had some health problems, thankfully I’m not really “super sick.” Instead, I seem to be annoyingly sick. Maybe sick isn’t even the right word.
As I had mentioned before, week before last I was at work and suddenly had these dizzy spells and felt as though I were going to faint. We guessed that maybe it was the antibiotics I was taking for a staph infection. Since I’d already been on them six days, we decided to quit them and see if the dizzy spells went away. They did, sort of.
I slept huge chunks of last weekend. I have a tendency to sleep when I’m sick, or about to get sick. But, given my stress levels lately, I chalked up the 12-hour naps to pure exhaustion. And maybe that’s right. Maybe I’m just worn out. Monday went fairly well at work, but about a half hour before I was supposed to leave to go home I felt “the itch.” It was a “code brown” – an ostomy leak in progress. Since it was so close to the end of the day, I rode the bus home praying that the dike wouldn’t break completely before I was able to attend to it.
When I got home I discovered the sore area under my stoma was bleeding again, and as I tried to clean it, it was quite sore. I’d had several leaks the week before as well.
That same sore spot was acting up before I went to NIH, so I’d requested to see an ostomy nurse while I was there. She came, looked at my little skin issue, helped me clean it well (because it was so sore) and suggested I seek out an ostomy nurse at home who could more regularly help me.
I hadn’t exactly gotten on top of that mission when I got home. The dizzy spells started, work was falling apart, and so I put it off. I hadn’t really had much luck successfully connecting to an ostomy nurse at home, and I expected it to be a hassle.
Monday evening I seemed to be having “code browns” every few hours. I couldn’t keep a pouch on, which meant I pretty much didn’t sleep. By morning I’d broken a record – four hours leak free – and so I thought maybe I’d finally had “the magic touch” and off to work I went. By 10:00 am I was having another “code brown” and had to go home.
Thankfully I have the sort of job that you can pretty much do from home easily – that is if your computer is working. Mine, however, has been dying a slow and painful death for months. Ryan’s laptop is great, but not for pulling 12-hour shifts. I tried to wade through work, exhausted, moving back and forth from my desktop to my laptop, all the while changing my ostomy every so many hours.
Wednesday I was afraid to go to work. I hadn’t slept again for fear of waking up in a pool of pooh. Every time I have to take a cab home from work, it’s about $25 with tip. I can’t do that every day.
So, I struggled to work from home and track down an ostomy nurse.
The last time I complained about ostomy issues at the Family Medicine clinic, I got a referral to the wound care clinic 28 days later – hardly a hell of a lot of help when you’re afraid to go anywhere for fear you’ll find yourself in public with poop running down your legs. My good friend “Dr. Karen, a.k.a Karen Tillman” coached me through that little crisis. I showed up at the wound care clinic, even though I no longer needed their help, just to try to connect with an ostomy nurse. I got a pager number and it’s been a very weird catch-as-catch-can arrangement.
So, by Wednesday this little project has reached a new level of urgency. Even though I’ve only seen my GI doctor once, I really liked him. I thought, being a GI doctor, he could probably suggest how to get plugged in with an ostomy nurse. So I tried to call his nurse. I guess I must have sounded really desperate on the phone (probably the lack of sleep coupled with frustration) and suddenly my GI doc was on the phone telling me if my stoma was bleeding, to get myself to the ER. No, no, no…I tried to explain what was going on. He was so nice. Within five minutes the hospital’s ostomy nurse was calling me back. Yes, progress!
It turns out the reason I’ve always had such difficulty connecting with the ostomy nurse at KU is because they don’t actually have an outpatient ostomy clinic. As I might be requiring a bit more in the way of ongoing care, she referred me to St. Luke’s Hospital.
I went to see my new ostomy nurse today for the first time. She was lovely and very helpful. She tried a number of different pouches, but decided the one I was using was probably the best for me because my stoma is a bit close to my waste line.
The one thing she did suggest, however, was kaltostate for the bleeding area. This stuff comes in small sheets and is, essentially, seaweed (although it doesn’t look like the seaweed you eat, so there’s probably more to it than that – I’ll be looking it up soon). You cut off a little strip the size of the wound and it both protects the wound from being torn open again when the pouch is removed, and it helps clotting. She set me up, and so far, I’ve had a leak free day.
I needed it. I’m so far behind at work. Between my incredible fatigue this week, the constant ostomy distractions and my ever crashing computer – I haven’t exactly been on top of my game at work. That, coupled with my boss being out etc….and let’s just say if I weren’t already stressed – it feels as though someone is slowly turning the stress meter up and up and up.
And this brings me to the dizzy spells. They’re back, but it’s hard to explain because they aren’t like the ones I had right after I got back from NIH. And I don’t know that dizzy is the right description. It isn’t as if the room spins or anything. It’s more like suddenly I feel flush, and then odd, as though the world is far, far away. I feel short of breath, almost as though I’m being closed in, except I’m not.
I thought perhaps it was the incredible stress I’ve been under – that maybe it was psychological. And maybe it is.
But, as if I don’t have enough going on right now, last night my ear started hurting. It’s been hurting on and off, but not badly. It seems to hurt more when I move my head. When I went to the doc for the dizzy spells, they checked my ears for an ear infection and they were fine. I’m wondering though if maybe it’s more of an inner ear thing – my ear hurts but not constantly, and not that badly.
The other possibility is my thyroid. Despite starting medication for an under achieving thyroid, my thyroid numbers are still moving in the wrong direction. Could that be causing any of this?
On top of all that, I think I’m getting a urinary tract infection.
I sound like the biggest hypochondriac alive! I’m afraid if I march into my doc’s office with this whine list, she’ll think I’m bonkers. I have an appointment next week, so I’m hoping some of this stuff just goes away by then, or at least doesn’t get any worse. I can’t miss any more work!!!!!! I’m almost beside myself.
|
-
Don’t worry, I’m not lost. I am, however, having some health issues, life balance issues, major stress issues etc. So, that’s why you haven’t seen much blogging lately.
Today I had to come home early from work, once again, thanks to a “code brown.” We’ll blog about that later. But, while I was laying on my bed, upset and in a bit of pain, I was listening to NPR and heard the most delightful segment on Talk of the Nation. It helped me calm down.
They were talking about lost and found items. They interviewed the guy in charge of lost and found at Grand Central Station about all the wacky things people have lost, and the extent to which they’ve gone to find the owners. Another guy was interviewed who has started a magazine called Found that looks like a blast to read. I’m going to have to check it out further. Essentially, his magazine is full of stories about found notes, lost items etc. They were very interesting - some sad and some funny.
If anyone’s interested in little entertaining, human interest reading, I strongly urge you to check out the radio show and the magazine.
It made me think of something I once lost that I would LOVE to find again. Before my blogging days, I kept a journal. When I was first “officially” diagnosed with HPS I recorded it all in my journal. I recorded the day that doctor started asking me the questions that caused me to google Hermansky-Pudlak Syndrome for the first time. I recorded my thoughts during my first trip to NIH. I recorded my thoughts about my first HPS conference. And, wouldn’t you know, just when that particular journal was so full I was almost ready to start a new one, I left it in the seat pocket on a flight. I tried to call the airlines and find it, but to no avail.
Can you imagine finding someone’s journal in the seat pocket on a plane? Most people wouldn’t be able to resist. They’d read it, maybe hoping for a little scandal, something salacious maybe? And instead they’d find this horribly emotional, terrified, story about getting diagnosed with a rare disease. I bet that was a shocker!
So, just in case there’s someone out there that stumbled upon my diary in the seat pocket of an airliner (I think it was a Southwest Airlines flight) – I want it back.
|
-
|
I was a bit sorry I had to mark such a huge event, the opening of the GI protocol for Hermansky-Pudlak Syndrome at the NIH, with such a quick post the other day. So, here are some more thoughts on this subject.
First, if you’re interested in more information, you really need to call Donna at the HPS Network. If you call or e-mail me, I’m just going to tell you to contact her. I wasn’t at the meeting she had with Dr. Yao about the specifics of the protocol, so what I know about it is general information only.
The other quick little disclaimer I want to throw out here is that these are just my thoughts as a totally non-medical person. So, if anyone out there wants to correct me or take exception with my thoughts on this subject, please have at it.
The opening of the GI protocol is indeed a big event for us. Huge! Exciting! A major step forward! I’m thrilled.
A few of you wrote to ask me if this was indeed the first HPS GI protocol at NIH, remembering a call for volunteers that went out a few years ago.
That’s true. Several years ago Dr. Mannon and his team opened a research protocol to study the GI issues of HPS – but that was research only. They performed colonoscopies and endoscopies of several HPS volunteers, some with bowel disease and some without. They were trying to better understand the nature of the Crohn’s-like symptoms among many HPS’ers. I remember that protocol because I was one of the volunteers.
This time around, however, the protocol isn’t just collecting samples for research. This time they are evaluating which Crohn’s treatments seem to work best for patients with HPS, and hopefully, they’ll start to gain a better understanding of why certain treatments work better than others. That information will hopefully provide the clues they need to then develop even better treatment options.
That’s why the protocol is so exciting for us. It’s the beginning of greater things to come, we hope.
As I said before, the protocol is small and there are a lot of criteria that have to be met, and exempting criteria that you can’t have, to qualify. You must not be on certain types of medications. You must be sick enough that your GI symptoms are active (needing ongoing treatment) but not so sick that you’re encountering many complications. That’s easier said than done. You can’t have had certain types of surgery. Your blood work must meet certain criteria.
There is a method to the seeming madness. I think they’ve set up the criteria as it stands because they feel it will give them the best picture about whether changes in treatment are having any effect. If someone is too sick, or has too many drug reactions etc. – how can you be sure whether bad results are due to those drug reactions, or simply barking up the wrong therapy tree?
In the end it’s for the benefit of us all.
I am so grateful to our researchers – all of them. I feel honored to know them. They have a difficult job, more difficult than we as patients often appreciate.
From my perspective, sometimes this work can be so hard. I was so naïve when the Pirfenidone trial opened. I wasn’t part of the Network yet for the first trial, and so I approached the second trial not fully understanding what we would be in for exactly. Yes, it’s exciting to have the trial open, to know that we’re working our way closer to the goal. But there were things I didn’t think about in the beginning.
For starters, I remember thinking Kevin was such a pessimist for thinking the recruitment for the trial would be so hard. It seemed to me like we had HPS’ers needing this sort of help coming out our ears. Finding 40 patients seemed like nothing. Boy was I wrong!
I didn’t appreciate how hard it would be to overcome many of the socio/economic obstacles we’d encounter. But perhaps the thing that has impacted me most personally that I didn’t anticipate was the number of people who would not qualify for the trial because of other medical reasons.
During the past two years there have been nights on the phone with other HPS’ers who didn’t make the trial because of other health issues. They are hard conversations for me. Sometimes I feel a kind of guilt for even trying to be encouraging or comforting because I did get into the trial. Who am I to know what it was like to be turned down? I can well imagine, but it’s not the same.
Other times it’s frustrating personally to encounter people who would make the trial, but don’t want any part of it. It isn’t that I don’t respect their position. I have to respect their choice. Besides, it does us more harm than good to have people admitted to the trial that aren’t dedicated to it. In the end, that’s worse because it could lead to bad data for a good option. But, that doesn’t mean that there aren’t days when that’s tough for me.
It’s worth it though. It’s worth it to make the research move forward. It’s worth it for the benefit of everyone – HPS’ers now and in the future.
I worry that I might not sound as excited as I truly am about this development. I am so hopeful about the outcome. I’m hopeful that the GI folks at the NIH will fall in love with the HPS community. I’m hopeful that perhaps our Crohn’s-ish “stuff” will help to shed light on better treatments for everyone with Crohn’s. I’m hopeful that perhaps, eventually, following more and more HPS’ers with bowel issues, they’ll eventually figure out why only 20 percent of us develop the bowel issues, while the other roughly 80 percent don’t. Could the answer to that question perhaps be a clue in the bigger HPS puzzle? Is there a relationship, a link if you will, between the lung and bowel issues, and could that be another clue?
There’s so much to learn both in pursuit of better treatments and in pursuit of the cure. Opening this protocol is a nice, big step in the right direction.
|
-
Do you ever wonder why you are where you are today? How did you end up in your chosen field? What attracted you to it in the first place, and would you have made a different choice under different circumstances?
Recently my friend Tina was a kind of mentor/camp counselor at a special summer “camp” for blind and visually impaired kids interested in science, engineering or mathematics careers. I wish I could have been a fly on the wall during the week of exploration into all sorts of things such as astronomy, chemistry and biology.
The idea of going to “science camp” would have never caught my interest back in my school days. I would have avoided it like the plague. Today I find myself wishing I had a stronger foundation in these areas – thanks in no small part to this HPS mystery brewing inside me. I guess I fit my chosen profession, journalism, in one respect – it drives me nuts to have a question, and not be able to find the answer.
After returning from NIH I was chatting with my mom on the phone. I was telling her about our little field trip to the lab, and seeing the cells in the microscope (actually on the computer monitor.) We got to talking about my interests as a kid, and how ironic it is that now I have some interest in these topics.
Sometimes when my mom and I talk about my childhood and education, my mom can get defensive. As an adult, I’ve made decisions that were contrary to what the “experts” told her she should do for me growing up – things like using a cane or trying to learn Braille. I think perhaps she thinks that I think she made “mistakes” in those areas. I think nothing of the sort. My mom did the best she could. She was a bulldog of an advocate for Ryan and I growing up, and she followed the conventional wisdom of the time. She did the best she could, and she must have done an okay job. After all, I’m independent and gainfully employed today. Even today there’s no consensus or clear direction on some of these issues.
So it was refreshing to have a conversation about this aspect of my education free from any tension. My mom said that it had never occurred to her or my dad to try to encourage me in these areas of study because they didn’t seem like a good career fit for a legally blind person. I always felt I simply had a lack of aptitude in these areas, and that my parents knew that.
I’m not saying that indeed, I’m a bit lacking in talent for these areas, but now, because of my newfound interest, I wonder if I was more lacking in encouragement and nurturing in these areas rather than just being really bad at them.
I always struggled with math. I can’t even tell you how many teary evenings were spent around our dining room table at homework time when I was in high school. The frustrating part was I usually got the concept, and yet would constantly make some small error along the way – like copying numbers incorrectly, that would trip me up and leave me frustrated.
As a junior in high school I was taking algebra/trigonometry and spending hours upon hours every night struggling. It was affecting my overall emotional state. I was so discouraged and frustrated and felt so stupid. I remember a meeting was convened to evaluate whether I should remain in the class. As miserable as I was, it annoyed me that the offered solution wasn’t more help; it was to simply drop the class. I stayed in, and got a “B” in the end.
Biology, however, was something I was actually pretty good at, although I lacked any real interest. I remember after one particular exam the teacher essentially chewed out the class for turning in such a lousy performance. She told them that if I, a legally blind student, could ace this test the rest of them should be able to do the same. I was mortified. What was she trying to do? Ensure I was a social pariah for the rest of my high school career??? And what was this statement supposed to mean “if even Heather could ace the test…” Why wouldn’t I be able to ace the test? What did that say about her standards or expectations for me?
Sometimes I read the parent boards on the NOAH site, or the comments of new parents on the albinism international list, and I wish I had the time and resources to spend more time offering a few words of wisdom.
New parents of children with albinism, understandably, are often quite pre-occupied with how well, or poorly, their child sees. So often the words of support in return point out the great variability in vision among people with albinism and stories are shared about older children whose vision didn’t turn out to be that bad. That is great, but as someone on the lower end of the albinism vision spectrum, I can’t help but want to give a little different answer (although I simply can’t always respond.)
My answer would be more like this. The vision of children with albinism varies greatly. Do what you can to stimulate visual development and make the most of what God has given – but please, please know that no matter what a child’s vision ends up being, their future is bright. In the end the amount of vision isn’t the determining factor in how complete and normal a child’s life turns out to be. It only impacts the tools a child needs to get there.
What determines how complete and normal a child’s life turns out to be more often comes down to the expectations set and the attitude embraced by the family. Just take a look around the blindness community at all the accomplished blind adults I never knew as a child – the chemists, biologists, mathematicians, lawyers, politicians etc. Don’t let your child’s future be limited by your own hang ups about vision, or driving, or what you think a visually impaired/blind person can do. Set the bar higher than that and reach for the stars.
In the end, I became a journalist. To be honest, it was a career choice that didn’t go over well with a lot of people. To them, it made about as much sense as being a blind biologist or any of the other things I wasn’t supposed to be able to do.
I don’t know why it was so easy for me to envision this career path, and not others that were supposed to be out of my reach. I don’t know why I was able to step out on a limb for journalism and not something else. And now, with 10 years of experience under my belt, I’m considering other career paths. In the end maybe it doesn’t matter. This was God’s plan, and my journalism-related skills have proved useful in ways I could have never imagined.
So, now in midlife, I’m facing a whole different set of challenges and looking for ways to not be limited by them. But that’s another blog entry.
BTW – if you’re looking for resources for blind and visually impaired kids interested in math and science, or you’re an adult trying to figure out how to adapt lesson plans etc. check out: http://www.blindscience.org/ncbys/Default.asp
|
-
|
First, let me apologize for the quick and dirty post. (See last entry – grin!) I really want to blog at length about this, but I’m under some big bad deadline pressure right now. It will have to wait until the weekend.
But, I do want to get the word out that the GI protocol is open. This is exciting news as it’s the first treatment protocol at NIH devoted to the bowel issues of Hermansky-Pudlak Syndrome.
The tough part about it, however, is that they are only accepting 10 patients and those 10 patients have to meet a pretty long list of requirements, plus not have any of the long list of exclusionary criteria. That means that not everyone I’d like to see get into this protocol is going to be able to do it.
If you do have bowel issues related to HPS, and you are interested in going to NIH for treatment, please contact the HPS Network and check it out. It can’t hurt to find out if you’d meet the criteria, and even if you don’t, it’s helpful for us to know you’re out there, you’re having issues etc. This protocol, like the lung protocols, is only the beginning. We need your information to keep pushing the research forward.
|
-
|
I feel like one of those bobble toys where the head spins around and then pops off.
My phone was ringing with Hermansky-Pudlak Syndrome calls before I even got out of the shower this morning. Frankly, that was the highlight of my day. I love working on HPS things, even on the days when the calls are tough and emotional. And today there have been some tough and emotional things going on in HPSland. I feel like it’s what I’m supposed to be doing.
But that doesn’t pay my bills. Work pays the bills, and work is a big stress pit right now. I can’t get into all the reasons why, but the fact that my boss is on maternity leave and our editorial assistant, while eager and smart, is a bit wet behind the ears, isn’t helping. It really would have been ideal if we’d been able to hire him well before my boss left for her leave. He needs to be trained, and I’m doing a lousy job of training him because I can barely keep my head above water.
Our publisher is running the ship while our editor-in-chief is away. Sometimes it’s hard to draw the line between all the great things we could do that would make the magazine even better, and what we can realistically accomplish with our given resources. She lives in the land of the former, and I live in the land of the ladder.
Then factor in things like my wonky body. Hey, guess what – I get tired. I especially get tired when I’m taking home work every night. And when I get tired, my nystagmus is a mess. And when my nystagmus is a mess, it’s really hard to edit things because your eyes don’t want to stay still long enough to focus on a line of text.
I’m in the process of rewriting my feature. I’d written it as assigned, but then it was decided it would be even better if done a different way. And it will be better – and I’d like it to be better – but it’s not the only thing I have to get done, and get done NOW! Personally, it’s not the priority I would have made.
Tonight I took home some articles to edit. One came in from a freelancer, and it’s just not what I was looking for at all. It needs a lot of work. I’m tired and I can’t focus on the words. I don’t have time to give it back to the writer to rework. It’s part of a supplement and it has to go to the printer ahead of the magazine. It needs to be done NOW!
I have a bunch of other stuff I need to edit to keep our editorial assistant moving forward, but I haven’t had time because of the two projects mentioned above. And it needs to be done NOW!
Oh, and then there’s the other five articles I’m supposed to have done this week. And they need to be done NOW!
Oh, and then because I’m an idiot, I took on a freelance story this week. Why, you ask? Because I need the money. Those dizzy spells last week cost me about $70. It wasn’t in my budget. I need to make it back.
When I left work today I felt like a wind up toy ready to burst. I felt so stressed out and overwhelmed. And then as I sat on the bus home, I felt down right pissed off. (Excuse the language, but mad or angry don’t quite cover it.)
I’m doing the best I can. I can only edit one thing at a time. No one is going to die if I finish my feature tomorrow or the next day. These work issues are not life or death. One thing HPS teaches you is what having a real problem means. Why am I pushed to the limits for something so trivial? If I’m going to be this stressed out over work, there should be a real sense of mission about it. This level of stress should be reserved for things that really matter – not unrealistic goals or profits or personalities. And yet, it’s now late at night and I feel like my body is still racing.
I’m trying really hard to get it all done and not complain because I need a favor, and I dare not ask until the issue is in better shape.
In October there’s going to be a conference of genetics counselors in Kansas City – yep, right on my back doorstep. Another item on my list that needs to be done NOW! is an application to go representing a patient advocacy group. I have GOT to make that happen, but it will mean missing two days of work. I also need to miss a day of work in November for the HPS board meeting, and then there’s the last NIH trip of the year. I’ve now used all of my vacation, sick and personal days. I’m well into FMLA territory. I’m skating on grace until the end of the year.
The genetics conference is important, however. Most parents of children with albinism end up visiting a genetics counselor at some stage. So often it seems a guestimation of the type of albinism is made based on physical appearance and the family is sent merrily on their way with their diagnosis. Rarely is a mention ever made of HPS, to be on the lookout for bruises or nose bleeds etc. What if children with albinism were screened for HPS as a matter of course? What would it take to make that happen? What are the pros and cons? Too often children with HPS, or adults for that matter, aren’t on the HPS radar until something bad happens. Surely it doesn’t have to be that way.
My “style” if you will, when dealing with a new group, a new segment of outreach etc. is to sit back and observe and figure out who is who, and what is what. I’m not hoping to attend this conference and change the world. I’m hoping to maybe learn a little more about this segment of the medical world, better appreciate how they work and what they do, and hopefully make a few contacts or allies that can help us figure out how to get children diagnosed early.
Everyone please forgive me for being slow to respond to e-mails. We’ve got a couple of fundraiser ideas and I need to e-mail some of you back about those projects. But, it isn’t falling into the NOW! category just yet.
|
-
|
Since stopping the antibiotic I’ve been feeling better and haven’t felt like I was going to pass out. That was scary. I’m not real interested in doing that again.
I have been very, very tired, however. Maybe fighting something off? Who knows.
But then last night I was sleeping soundly, even dreaming, until I woke up about 3:30 am gasping for breath.
I seem to have a talent for being able to unfasten all four clasps on my CPAP mask and toss it across the room without ever waking up. Although my current mask is the best one so far, I still have a tendency to do this.
I like to sleep on my side, and I have a feeling that the mask’s seal somehow gets unsealed, and in my sleep I find the escaping air annoying. So, off the mask comes.
When I woke up I was maskless, so I suspect I’d had some kind of apnea event and my body, trying to breathe, woke me up. Just a theory mind you.
The weird thing was I couldn’t seem to catch my breath. I was breathing okay, yet I had this feeling like it wasn’t enough. I crawled out of bed and grabbed my rescue inhaler out of my purse, thinking maybe it was an asthma thing? That did seem to help.
But as I sat in bed trying to relax and breathe normally, I had the most horrible thought.
Is this what it might feel like someday if my pulmonary fibrosis gets worse and my lung function is in the crapper?
I used to think about this when I was first “officially” diagnosed with HPS five years ago. But since then I’ve settled down when it comes to anxiety about the future. After my fantastic test results at NIH, I’ve actually been floating on the clouds at the thought that we might be able to stave off this thing for years and years. Just maybe….so far so good.
So why on earth did this horrible, horrible thought pop into my head in the middle of the night?
I’m embarrassed to even admit it, to be honest. How stupid is this? Where did this come from?
I started to feel out of breath again at the thought, but this time I think it was anxiety. I’ve never had a panic attack before, but I think I was approaching that territory there in the dark of my bedroom at 3:30 am.
Calm down, you must calm down…you’re making it worse….I thought to myself….you’re being a drama queen….cut it out. Good thoughts…..
I started praying, “Oh Lord, you’ve got to help me calm down. You’ve got to help my brain change the channel….”
I tried to take slower breaths, relax the muscles in my arms and legs. I thought about the lyrics to some of my favorite songs in my head. Calm…..calm……
Today, in the light and sanity of the morning, I’m completely perplexed by this. Why this thought? Where did it come from? And how am I going to make it go away?
|
-
Below is a press release from the Coalition for Pulmonary Fibrosis regarding an advertising campaign they are launching to try to get Congress to approve more funding for research on Idiopathic Pulmonary Fibrosis? Bravo to the Coalition!
I’ll let you read the release, and then I’ll make some comments at the end.
Coalition for Pulmonary Fibrosis Launches Aggressive Ad Campaign Directed at United States Congress
Organization Urges Congress to Increase Federal Funding for Deadly, Incurable Disease
Click Here to View our Advertisements
San Jose, Calif. (Sept. 4, 2007) -The Coalition for Pulmonary Fibrosis (CPF) is launching an advertising campaign aimed at Members of Congress in support of its National IPF Awareness Week Sept. 22-29, 2007.
The campaign, which includes both print and online ads, will kick off on Sept. 6 and urge Members of Congress to take action to increase research funding for idiopathic pulmonary fibrosis (IPF), and to improve education and awareness of the disease in the medical community and general public. Prevalence of IPF has increased more than 150 percent since 2001. There is no FDA approved treatment and no cure for the disease that will claim 40,000 lives this year.
"The silence around IPF is deafening," said Mark Shreve, chief executive officer of the CPF. "This campaign represents the voices of thousands of patients who are too debilitated to travel to Capitol Hill during IPF Awareness Week and speak for themselves."
The campaign will appear in print in Congressional Quarterly's CQ Today on Sept. 6, 12, 20 and 25, and in Congressional Quarterly's online publication HealthBeat the weeks of Sept. 10 and 24.
"This campaign is a critical component of IPF Awareness Week to advance our efforts to represent the needs of this community of patients and researchers as aggressively as possible," said Shreve. "Our goal is to get the attention of Members of Congress and their staffs to gain their support for increased funding for research, education and awareness while also furthering legislation that impacts IPF patients and their families."
The ad campaign was created pro bono by Jeff Hardy, owner of Floor Eighty-Four Studio in Los Angeles, Calif. Hardy recently lost his grandfather to IPF.
To view the CPF's ads, please click here.
About Idiopathic Pulmonary Fibrosis (IPF)
IPF is a lung disorder characterized by a progressive scarring - known as fibrosis - and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from IPF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. IPF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis.
About the Coalition for Pulmonary Fibrosis
The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for idiopathic pulmonary fibrosis (IPF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure pulmonary fibrosis; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of IPF issues; and works to improve awareness of IPF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 13,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with pulmonary fibrosis. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
I’m very excited about the work that the Coalition is doing to advance research into pulmonary fibrosis. The more we learn about pulmonary fibrosis, idiopathic or genetic, the better for everyone. The Coalition does an awesome job of advocacy. There will be things learned that will help HPS’ers.
However, because most people develop pulmonary fibrosis for no known reason, everyone seems very stuck on “IPF.” But all that really means is that research hasn’t figured out the cause yet. As funding increases for research, that will change. There is a cause. There is a reason. I can’t help but wonder if this terminology, in the end, will be limiting.
Those of us with pulmonary fibrosis because of Hermansky-Pudlak Syndrome have a lot of offer pulmonary fibrosis researchers. Because most pulmonary fibrosis is idiopathic, it’s impossible to study how the disease develops early on, or how it might be detected earlier. Yet we know that people with HPS types 1 and 4 develop pulmonary fibrosis. We might not know exactly when, but we’ve got a pretty good idea it will happen. We are a perfect model for research that would benefit not only HPS’ers, but the pulmonary fibrosis community as a whole.
Indeed some of our researchers at NIH are working on some really exciting stuff. When they publish it, you can be sure I’ll be blogging about it. So, why would you limit funding to IPF? It seems like a matter of semantics to me that has the potential to get in the way.
For years now the HPS Network has been working hard to even be included in medical text books as a cause of pulmonary fibrosis. I think we’ve made some headway there. Now one of the challenges I’m working on this year is to find ways to make “the list of possible causes of pulmonary fibrosis” in sources of information geared towards patients.
It’s not unusual for HPS’ers to find us only after being diagnosed with IPF. And often that’s by sheer dumb luck. I can’t help but wonder how many HPS’ers there might be in the general pulmonary fibrosis population who simply haven’t connected their albinism to their lung disease?
|
-
|
The last few days had the sort of excitement I could really do without, thank you very much. I’ve missed another two days of work and given that we’re so short staffed, this is not good.
Wednesday evening I ventured down the street to the drug store about a mile away. I felt so tired. The drug store has been under renovation for nearly a year. I think someone is making a career out of the project. That means that every time you go to get something, it’s been put in a different place.
And this time the mission was of a female nature. I went to the pharmacy and tried to get the attention of the female pharmacist, but she was busy so the guy had to help me. He had an African sort of accent and couldn’t seem to understand what I was after. How do you explain what a maxi pad is to a guy who doesn’t seem to speak English?
He took me over to the bladder control section. This was not working, and I was feeling increasingly tired and getting cranky.
So, a female manager stepped in to help, but rather than walk over to where we were standing and lend a hand, she had to shout directions to him from across the store. So much for a little privacy.
I walked home with my package and when I arrived, I discovered that I no longer had my keys. Sitting on the floor outside my door, I turned the contents of my purse upside down trying to find my keys. How could I have lost them???? I felt so tired that the thought of walking another mile to the pharmacy and back again was just more than I could do. And, of course, my mobile phone was happily charging inside my apartment.
One of my neighbors came home and called the landlord for me. The commotion in the hallway caught the attention of the other neighbors, and we all ended up in the living room of the woman that lives across the hall from me. I felt so bad because I knew she wasn’t really expecting company.
As we sat there talking about the neighborhood, the laundry room etc. suddenly I began to sweat as though I had just done a hard workout. Everything began to turn red and the voices of the ladies seemed as though they were far away. I felt as though I were going to pass out. I felt short of breath, although I think that was probably from the anxiety of feeling as though I was about to end up in a heap on the floor for no good reason. All I could think was, I’m going to pass out right here on this poor lady’s floor and scare the crap out of her!
Funny how when you really don’t feel well your common sense seems to desert you. All I could think about was not getting sick or passing out in front of these ladies.
I asked for some water and sucked down about three glasses. The landlord arrived, let me into my apartment, and I felt better. I decided I was probably just dehydrated from the walk, and I hadn’t been able to get inside to get something to drink.
I went to bed, woke up the next morning and went to work. I had two more similar episodes at work by 11:00 am.
The whole thing just seemed so silly. I was just at the NIH last week having the most complete physical known to man. I was quite sure there was nothing serious wrong with me.
The only real change there had been was a minor little staph infection on my skin. Dr. Merideth had given me some Cephalexin for it. No big deal. It seemed to be clearing up nicely.
But you can’t be on the verge of passing out on newsletter deadline day and not have a good excuse. And I knew if I called back to the NIH, they’d probably tell me to get myself to my local doc. So, that’s what I did.
Of course by the time I got there I was feeling much better. My blood pressure was high, but otherwise everything was fine. And it wasn’t so high that you’d think I’d be passing out.
They concluded I was probably either dehydrated, or having some sort of reaction to the antibiotic and sent me on my merry way with instructions to come back if the problem kept up.
They gave me a note for Thursday expecting I could go back to work on Friday. The trouble was Friday was the height of that time of the month for me, no small thing for many of us HPS’ers. If I already wasn’t feeling well, now I was feeling bad cramps and very tired.
I was afraid to go to work for fear that if I got sick again, I’d end up with another $25 cab fare home – not to mention being sick in the restroom at work is just horrible.
So I stayed home and called Dr. Merideth. She was so nice and helpful. We decided to stop the antibiotic and see what happens. I’d already been on it for six days.
I tried to work from home Friday, but by afternoon I’d concluded it was a lost cause. I was so crampy, and so tired, that I couldn’t focus on what I needed to do. I just went to bed and slept for a blissful six hours!
Today I feel run down and tired – but I think that might be the usual HPS cycle thing.
We’re going to try Lo Ovral and see if we can’t do something about these HPS female problems. I’ve tried pills in the past, but had a bad reaction to them. These are different, and so I’m hoping they’ll maybe work better. If not, I’ll be back at NIH in December and we can re-evaluate then what to do.
|
-
The National Organization for Albinism and Hypopigmentation (NOAH) has picked up this blog in the blogs section of their Web site. I was very pleased and honored that they asked. I must, however, warn any new readers that, while I’m thrilled that anyone would want to read this blog, my intended audience is the HPS community. HPS is a type of albinism, and thus many of the issues I encounter in life are the same as anyone else with albinism. Because HPS involves other health issues, however, sometimes this blog gets pretty frank about topics that not everyone would talk about in polite conversation.
Non-HPS’ers might be a bit rattled by some entries.
And sometimes entries have nothing to do with albinism, HPS or health. Grin! This is, after all, my personal blog.
I also want to point out that not everyone with HPS has the same types of health problems that I do. There are eight known types of HPS (and probably other types not yet discovered). I have HPS type 1. You can read more about HPS on the NOAH site, or you can visit the HPS Network, a patient advocacy group just for families impacted by HPS, or a handful of other extremely rare related syndromes. Please feel free to e-mail me with any additional questions regarding HPS at hkdawn@yahoo.com – but please put HPS in the subject line. I get a lot of e-mail, and a LOT of spam!
|
-
|
I must confess, I know nothing about hockey.
Back in my much, much, younger days I was a figure skater. Yeah, I know, hard to imagine, but it’s true. To me, hockey players were those obnoxious boys that raced around the rink and messed up the ice. They’d skate around you as close, and as fast, as they could. Not being able to judge distance very well, it used to scare the begeebies out of me.
But, I think I’m about to become a hockey fan.
Regular Hermansky-Pudlak Syndrome conference attendees might remember Barry from Canada. He wasn’t at conference last year, but has been several times. He’s from Nova Scotia, Canada.
Barry is a huge hockey fan, and growing up where he did, happens to know some professional hockey players. He reached out to Joey McDonald and asked for his help to promote awareness and do some fundraising for HPS. Joey graciously agreed. Joey now plays for the Long Island Islanders, the team that plays in the arena right across the street from the Marriott where the conference is held.
Our relationship with Joey is new, but I’m personally very touched and honored that he’s willing to take us on as a special cause and help us out. That’s something really special.
So, I hope you’ll all join me in a crash course about hockey, and in becoming a huge Long Island Islander fan!
|
-
|
For those of you that wonder why I have a google ad on my blog, I assure you, I’m not trying to make a few extra bucks off of HPS.
For several years my friend Tina and I organized a trivia tournament here in Kansas City in partnership with the Alpha Lions Club. Half of the revenues went to the HPS Network, and the other half went to fund blindness-related causes the Alpha Lions Club supported (mainly the Adventure Fitness Camp Fire program for blind and visually impaired kids.) Last year we decided not to do the tournament. Tina was stretched too thin in her life, and I certainly was in mine. But, I didn’t want to lose the revenue the fundraiser created for the Network. I wanted to do my little part, and frankly, I’m not flush enough to write big checks.
So, I decided to put advertising on my blog. I blog every day anyway, so it required no extra work on my part. The ad raises a pretty steady average of about $120 every four months. Not mega money, but in a year it’s about what we raised for HPS with the trivia tournament.
And as of August 31st, we hit $120 yet again. So, I should be able to send a check to the HPS Network in about a month. Yea to blog readers!
|
-
|
There’s one picture from our little trip to the lab that I’m not going to post. Dr. Markello introduced us to a researcher named Heidi who he referred to as one of the silent heroes of HPS research. Heidi looks at our cells in a special microscope that shoots a laser through them so they light up brilliantly.
The microscope was housed in a little room in the lab, and it was hard for all of us to squeeze in there to see it – let alone for Dr. Meredith to have enough space to back up and take a good shot.
Heidi fired up the microscope and showed us both a “regular” cell and an HPS cell. The dense bodies showed up as this neon orange, and the other parts of the cell were glowing neon green to yellow. You could really see the difference in the two examples. It was actually pretty easy to see!
And I really, really wanted to see it. My nose was right up on the screen, so all poor Dr. Meredith could get a shot of was my rather large backside. I was so absorbed in the moment that I forgot she was trying to take pictures, until I heard the click of the camera.
“Dr. Meredith, you’d better not be taking pictures of my big butt…” I said. “Ummm….you can delete them later can’t you?” she answered. Ha ha ha!
I should have backed off and let her get a better shot of the microscope, but I couldn’t help it. I really wanted to see what those cells looked like, and our time was short.
When I was in college an interest in anything “science” related was the furthest thing from my mind. I remember being thoroughly disgusted I had to take any science-related class at all. I started my college career at a small liberal arts college before moving to the University of Kansas. Thus, I decided it was probably a good idea to get this silly requirement out of the way while I was still at a small school and thus could get more one-on-one help.
That meant my choices were biochemistry 101 or zoology 101. I went with zoology because my fear of mathematics was even bigger than my total non-interest in science. Besides, in high school I’d found biology pretty easy. Chemistry, on the other hand, I had to really work at to get through.
Boy did I work at that zoology class! It was hard, but I must confess, I actually really enjoyed it. I spent more time studying for that class my first semester of college than any of my other classes. And there were parts of it that I found completely stupid and frustrating. For example, for one lab test we had to identify, and learn the scientific names, for 200 different types of birds. Guess what? Just as I suspected at the time, today I can’t remember a single scientific name for a bird – and I spent hours upon hours learning them. At the same time, I found the lab experience for that test totally fascinating. As a legally blind person, I’d never really seen birds except the odd bird in a pet store. I knew what birds generally looked like, but I had no real appreciation for how complex they really looked, or how much they could vary – and not just in size and color, but things like the difference in the texture of their feathers, the shapes of their feet, or the shapes of their beaks. The zoology lab had an extensive collection of stuffed birds, and I was allowed total access to them to study for my test. I spent hours late at night with these big trays of stuffed birds, carefully groping each one. For me, it was like getting let inside the cages at the zoo to look at the animals up close – except that, of course, they were all dead.
This method of tactile discovery worked really well for the tests on sea creatures, and small mammals, but it didn’t work so great for the sections on things like basic cell structure, bacteria and other such microscopic organisms.
I had a wonderful zoology professor. He was an older guy (old enough that he’d taught biology-related classes when my mother attended the same college.) Together we spent several hours trying to find a way for me to be able to look into a microscope and actually see something. We never could get it to work.
Looking through the microscope, I pretty much couldn’t see anything. My professor tried to rig up the microscope to a television screen and project the image on the bigger screen. Now I could tell there was a blob in the microscope, but I had a hard time picking out any of the parts of the blob. And, all the blobs pretty much looked the same to me.
So “Doc,” my professor, assigned me a lab assistant to go through the lab materials with me. She’d describe what I was supposed to see in the microscope, and I’d draw a picture of what I understood her to say. She’d look at the picture, and correct anything I hadn’t really understood correctly. It worked okay.
On test day, instead of moving from station to station to identify different things in the microscopes, like the other 140 students in the class, I sat down with the professor himself and went through everything we were supposed to learn, by memory, drawing everything out on a dry erase board. I’d essentially teach the information back to him to prove I knew it.
I’m not sure if it would have been easier, or harder, to take the tests the way the rest of the students did. But I did feel a certain extra pressure to know the material inside and out since I had to take the test, one-on-one, with the professor himself. You couldn’t just do “okay” and blend into the rest of the crowd. I had to sit in the front row every day, and I knew that the professor knew exactly how well I was doing and whether I understood what he was talking about.
And just to make it even more exciting, I had learned Braille the summer before. This was the first class for which I took all of my notes in Braille. That was a feat I’d never pull off again. By the next semester I was well into Crohn’s territory, struggling with pretty severe fatigue, and I abandoned Braille for print because at the time print was still faster for me. I often think if I’d just gotten sick a semester later, I’d be a pretty fluid Braille user today. But, that’s another story.
Anyway, I did very well in my zoology class. I had a pretty solid A. But, I always wondered if that was partly because of the way I’d had to take the lab tests? What if that professor had cut me a bit of slack because we were working so one-on-one? Would I have been able to cut it if I’d had to take the tests the way everyone else did? It really bothered me.
And it really bothered me that I never got to see what the little cells and various organisms really looked in the microscope. The birds and the fish and the rodents had all been so much more interesting than I’d ever expected – I was sure I was missing out on the little cellular organisms.
As I saw no future for myself in any kind of science-related field, I just chalked it up to one of those concessions you’ve got to make and counted myself lucky to have found a way to jump through this particular hoop on the way to graduation.
A few years ago Dr. Gahl had an image of an HPS platelet in motion as part of his presentation at conference. I’m not sure if our devoted doctors really understand that if we’re not sitting in the front row, (and sometimes even then) we really can’t see their presentations. But, knowing he had that on his laptop hard drive, I had to see it. At the break I asked if I could see it again, only now close up. He showed it to me. It was in black and white, not the colors we saw this last week at the lab. It looked to me as though there were little insects of some sort moving from the center of the cell out to the edges and maybe back again. But, I was pretty happy to see anything at all.
So, when this image popped up on the screen so large and so colorful – I had to get my nose on it. I just had to. Heidi quickly pointed out some of the things she looks at – we couldn’t just stay there and stare at it – but in my mind I wanted to say something like, hold up, I need more time to look at this. To H.E. double hockey sticks with the pictures of the lab – I need to see this thing.
When I’m looking at something complex that I’m having a hard time seeing, I tend to imagine a grid on top of it, and move from section to section, taking it in only a part at a time. I couldn’t just sit there with my little mental grid and ask what each little thing was – and in the greater scheme it probably doesn’t really matter if I ever know what the differences were between the little green parts and the little yellow parts in the middle etc.
I was simply really happy to just get to see something at all.
So, I’m sorry you all don’t get to see the microscope, or my big butt – this was my little selfish moment.
|
More Posts Next page »
|
|
|