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Jan's Corner 2004
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PC. As to the pain verses 'unsightly nail' issue, I'm not absolutely certain, but I've always thought there are degrees of severity to PC. In other words, side effects such as sores on the feet may not be as bad or even not there at all for some with PC. Many years ago I was told by a doctor that my case was one of the most severe. I can't remember which Dr. and have no documentation - it's just been in the back of my head. If that's true, it really could mean the nails are the most disturbing thing. I've corresponded with a woman who had the nails removed -- a painful procedure which I've opted not to do. I also heard from a mom whos child's PC nail got caught in the car air vent because the nails were so long. It surprised me that someone could let that become such a problem as we clip and trim daily. I guess the point is, there are people out there with nail issues and they may be more prominent particularly if side effects such as painfully sore feet aren't severe. As a teenager and younger, I hated the looks of my nails, as do my young boys do now. For example, for Nate (age 6) right now, the nails are a big consideration. But when his feet start hurting like Sam's (age 8), the nails will probably take back burner. Also, as a more confident adult and in a secure relationship with a man who loves me, t he nails are so secondary, I hardly notice them. But I can see people perhaps in a different situation really struggling over the nails. I continually hid my nails throughout the dating scene and in social situations. And I still sometimes get annoyed when strangers in public places loudly ask me what's wrong with my nails - like a checker with a long line of people behind me who stopped everything to inquire about my nails. What are your thoughts?
PC. As to the pain verses 'unsightly nail' issue, I'm not absolutely certain, but I've always thought there are degrees of severity to PC. In other words, side effects such as sores on the feet may not be as bad or even not there at all for some with PC. Many years ago I was told by a doctor that my case was one of the most severe. I can't remember which Dr. and have no documentation - it's just been in the back of my head. If that's true, it really could mean the nails are the most disturbing thing. I've corresponded with a woman who had the nails removed -- a painful procedure which I've opted not to do. I also heard from a mom whos child's PC nail got caught in the car air vent because the nails were so long. It surprised me that someone could let that become such a problem as we clip and trim daily. I guess the point is, there are people out there with nail issues and they may be more prominent particularly if side effects such as painfully sore feet aren't severe. As a teenager and younger, I hated the looks of my nails, as do my young boys do now. For example, for Nate (age 6) right now, the nails are a big consideration. But when his feet start hurting like Sam's (age 8), the nails will probably take back burner. Also, as a more confident adult and in a secure relationship with a man who loves me, t he nails are so secondary, I hardly notice them. But I can see people perhaps in a different situation really struggling over the nails. I continually hid my nails throughout the dating scene and in social situations. And I still sometimes get annoyed when strangers in public places loudly ask me what's wrong with my nails - like a checker with a long line of people behind me who stopped everything to inquire about my nails. What are your thoughts?
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December 2004
Merry Christmas! from Sam, Nate & Spencer
25 December 2004
My Favorite Shoes
1 December 2004
The day I walked outside and found my shoes in the backyard, chewed up by my cute new puppy, I cried. Yes, that's right. I actually shed tears over a pair of shoes. My favorite shoes. The perfect shoes – a type of ankle boot to be precise. I paid $70.00 for them. I would have paid $300.00 for them. When I bought them, if I would have known how wonderful they would feel on my feet, I would have bought 10 pairs. When I went places, I planned my outfits around those shoes. If the clothing didn't look good with the shoes, I would find a different outfit to wear.
Most PCers (including me) seem to hurt more when it's hot. As a result, many Pcers I've met prefer sandals. But I've yet to find a pair of sandals that give my own feet the comfort and support those particular ankle boot type shoes do. So I wear them all year long, and if need be, I take them off while I'm sitting to air out my feet, so the pain doesn't get too intense. But for standing and walking (even with crutches), nothing beats those heavenly shoes. And heaven must have been smiling on me, because thankfully, I was able to take those chewed-up shoes to a shoe repair shop and they were fixed as good as new, giving me the same comfort and support as before my darling dog took them to her teeth.
Now those shoes are three years old and getting quite worn out. I've dreaded finding a replacement pair. How many pairs will I end up buying to add to my collection of shoes that felt good in the store, but hurt terribly after a few times of wearing them? Finding the right shoes is so tricky.
Thanksgiving day I hit the jackpot. While skimming through the after-Thanksgiving sales in the newspaper, I saw my favorite shoe/boots in an ad, labeled with a different brand name, but they looked just the same. The next day I went to the shop to see if they really were the same. The salesman must have thought I was crazy as I tried on shoes that looked exactly like the ones I had just taken off. And then crazier when I asked if he had another pair just like them in the same size. The shoes were 60% off that day and I happily bought both pairs. They are now waiting in their boxes on a high shelf in my closet, out of the reach of my dog, waiting for my current pair to fall apart. And if you see me 10 years from now and I'm still wearing the same kind of shoes you saw me in this year, don't worry about my lack of current fashion because frankly, I'll take my comfy shoes over style any day.
November 2004
School Bus - Part Two - Resolving the Problem
1 November 2004
A while ago, I wrote about my 5 and 7 year old boys with PC getting spit on by a group of older boys while riding the school bus. Many of you commented on that incident and I promised to tell how we handled it.
A neighbor reported that her boys knew the names of all those bullies and were going to report them. She also said the bullies had threatened Sam and Nate, saying if my boys ever touched them (the bullies) with their nails, they would beat up Sam and Nate.
Note: It's interesting how little my boys will tell me about being picked on or bullied. I'm grateful I'm able to be home each day when they walk through the door. I often ask each of my kids the same two questions "What was the best part of your day?" and "What was the worst part of your day?" My advice to parents: Talk with your children because kids may be picked on and they just don't tell.
After talking with my neighbor, I was angry. No more did I think this was something my little boys had to put up with. If kids spit on a child with no arms or on a child because he had a different skin color would it be tolerated? And honestly, I was afraid for my boys. And mad. There was a momma bear in me I hadn't known existed up until that point.
Fortunately, I'm married to a calm, wonderful man who reminded me that we didn't want those kids to be our boys' enemies. After carefully talking it over, we decided to go to the bus stop where the spitters got on for a PC public relations campaign. That bus stop was far from our own stop so we didn't know these kids. But the next morning, Dave, Sam, Nate and Spencer and I all went to their bus stop with smiling faces and introduced ourselves to the children waiting there. We told them our names and then I explained very simply about MY nails, how they were just like theirs except the nails grow up, instead of flat, and how they weren't contagious. And of course, I then told them how Sam and Nate's nails were the same as mine and it was no big deal – just a bit different. A few parents were waiting with their young children and we told them what we were doing. We were happy for their support in our public relations campaign.
As it turned out, about 20 or more children got on the bus at that location. So Dave and I divided up as kids continued to arrive, giving our spiel over and over. Many children heard it several times. Some sweet children were even showing us oddities about their own nails.
But because there was that momma bear in me, I had to say quite sweetly how awful it was that some kids were making fun of Sam and Nate, even threatening them and spitting on them. "Can you believe it?" I asked in a shocked voice. I went on to say how bad I felt that their names had been turned in by some other kids and that they were probably going to be expelled from riding the bus.
Our PR campaign evoked three responses. First, some kids were penitent. One sorry boy even said, "I think I'm going to get kicked off the bus." The second response we got was to be ignored by the main group of bullies (whom Sam and Nate discreetly pointed out to me). They clustered in a group and would not come near us. They knew who we were and would quickly glance over at us. Third, and most importantly, we enlisted the compassion and help of a whole new group of kids, including some very nice BIG boys, who now understood a little more about PC. Never again would our boys have a problem on that bus.
We kept it upbeat, positive and friendly. We felt very good about what happened at the bus stop. For that second group of boys, I'm not sure what they were thinking, but I wasn't sure trying to teach them empathy would be enough. And they did do something very wrong. When the bus came, we waved hello to the driver. She recognized us with Sam and Nate and said she'd received the names of the persecutors from some other children (our neighbors). She was aware of the problem but was a substitute driver and didn't know how to stop it, but now that she had names of the bullies, she was turning them in.
We put our kids on the bus there and sent them off to school. Dave went to work and I went home and called the school to report what we'd done. The school said the names had indeed been turned in by the bus driver, but the principal was out for meetings that day so they weren't sure what could be done. I replied that I didn't think the bus was safe yet for my boys to ride home on and said I'd be at the school 20 minutes before school let out to follow up.
I arrived at the appointed time, and the person who takes the principal's place when she's gone was there to meet me. She told me she'd called in the boys one by one and each was expelled from the bus until his parents had signed his slip. I humbly and gratefully thanked her for her help.
I waited until school got out. Sam and Nate were very excited to see me and wanted a ride home. But I said to them, "You HAVE to get on that bus and ride it home – this day more than any other day." So I waved and said hello to all our new friends that we'd made that morning, many who continued to seek me out to talk with or say hello to for the rest of the school year.
I know I can't intervene for my kids on everything that goes badly in their lives. I can't and I won't. Believe me Sam and Nate both have dealt with bullies many times all on their own. But in this case it was time to step in. (Especially when 5 and 7 year olds are being ganged up by 10 and 11 year olds.) Hopefully we all learned something that day about solving problems and making new friends. So for all you who wanted it, that's the end of the story – and with a very happy ending!
September 2004
The world has shrunk
25 September 2004
Did you know the world shrunk during the past three months? At least for me in did. In that time, I've met 27 with PC. That's an amazing number considering the fact that before this year, the total I'd met was zero. If you add the people with PC that I've chatted with by email or phone in the past months, the total goes even higher.
I don't quite know how to explain what it means to meet people for the first time who know exactly what it's like to have this strange disease. I've known people without PC for years who still don't quite understand what I've got. Some people think it's worse than it is, while others can't quite comprehend why my feet hurt. Thus, to meet someone who knows exactly what I'm going through, well, it's hard to explain. We don't even have to say a word. We just seem to have an instant bond.
Last Thursday, I met for the first time a young woman with PC. She's a lovely person, a student here in Salt Lake City, who found PC Project through the website. We met in front of her apartment. I can honestly say I loved her and connected with her from that first moment. We hugged and the bond was there. You don't just do that with other people. You don't go meet someone at a swimming pool and hug because you both like to swim. You don't go meet the person who's helping you with your child's classroom Halloween party and hug because you both love children. But it somehow happens with PCers.
Meeting someone else with PC brings that incredible bond because I know THEY know what its like – and no one else really does, no matter how well you explain it or describe it. But my fellow PCers – they know.
That's what was so amazing about meeting PCers in both Kansas City and Dundee. I still feel so connected to them and I genuinely care about them, even after a relatively short meeting time. And it's interesting, once we meet, it's not enough to just know they understand. Finally, it's a chance to show my feet and nails to others and to compare and see similarities and differences. And even though there are some differences between us, that's okay too, because at least they still know, better than anyone else in the world, what it's like.
The first night I was in Dundee for the patient meeting, I met everyone and had this incredible experience of sharing and talking, just like in Kansas City. Afterwards, I went back to the hotel room I shared with Mary (you know, my mother-in-law, the Mary we all know and love) and we were chatting, tired, but on a happy high. And suddenly, I just felt overwhelmed with emotion. Maybe it was just jet lag, but it felt incredible to be with people who understood – not pitied, mind you, just understood. I also felt just as emotional about the fact that scientists and doctors who have dedicated their careers to skin diseases were there to host and be part of the patient meetings. To have scientists and doctors who were genuinely interested in understanding, well, that doesn't happen every day in a PCer's world and the only way they'll ever really know how much that meant to me is to have a heart transplant – from me!
All I can say is thank you to the many people – PCers, scientists, and others – who have sacrificed so much and have made these connections possible. You have touched my life, have given me great hope in the goodness of mankind, and have made my world that much happier. What marvelous people you are!
August 2004
Back to School
17 August 2004
Today I registered my three boys for the new school year which starts in just over a week. Already I'm wondering what this year will be like for Sam and Nate, my boys with PC. There are a few things I do every school year that I hope will help my kids. First, I explain to Sam's and Nate's teachers at the parent/teacher conference before the first day of class what PC is and how it affects them. This year I'm excited to hand them each a copy of PC Project's current brochure and website address. (Just send an email to request as many copies as you'd like.) PC is so tricky because sometimes my kids can participate in activities, but when their feet are infected or extra blistery, they cannot. Near the end of the last school year, Nate had a huge blister that flared up at school and his teacher saw his PC feet for the first time. When I came to the school, she met me in tears. This teacher was always understanding, but up until that time had never quite realized how much pain he was in. It's my opinion that educating others can go a long way in helping them feel comfortable about something they don't understand.
Second, I will make a plan with the teacher about whether or not to officially tell the other students about PC and how. I will wait to talk to both my boys and their teachers to see how we should handle this. For Sam and Nate, something so formal didn't seem to be necessary in Kindergarten and 1st Grade. But since 2nd grade, (Sam is starting 4 th ) Sam's peers have been much more aware of his nails and the fact that walking is sometimes hard for him. I've especially found it very important to communicate to other children that PC is NOT CONTAGIOUS. As much as I'd like to live inconspicuously, the reality is, other children are noticing and we have a choice to be offensive or defensive. We're finding the offensive can alleviate teasing, cruel words and even physical hurting (But not always.).
At the first of the last school year, after meeting with Sam's teacher, she and Sam decided it best to tell the class about PC and why sometimes it hurts and is hard to walk and sometimes it isn't. I offered to come and explain, but Sam didn't want me there – he wanted to do it by himself. This teacher gathered the class on a big rug and started the discussion by explaining to the class about her bad knee – how sometimes it hurt and sometimes it didn't and sometimes she needed a knee brace and sometimes she didn't. Then she turned it to Sam and together they explained PC and how Sam's feet were like her knee. Because of our previous discussion, she was very knowledgeable and was able to help Sam articulate. Sam loved how the discussion went and the school year was the smoothest he's had thus far in regards to teasing.
Nate just finished 1 st grade and up until towards the end of the school year, other students weren't bothered by his nails and feet. Then at a dance festival, where all the kids took off their shoes and socks, other children saw his sores and suddenly some friends he had all year didn't want to play with him anymore. From then on, until summer vacation, Nate refused to wear sandals. Needless to say, this year, we may be much more pro-active in formally educating his peers.
Another thing I do is volunteer in their classrooms. This serves many purposes. It's fun to be involved and it keeps me in touch with the teachers. It helps me keep things in perspective too - PC isn't the worst thing that could be going on in a child's life. But the biggest advantage to volunteering at school is I meet the kids in the class. They see me with crutches and always know whose mom I am. They say, "Hi!" and smile at me because kids are basically good and bask in any attention even a boring adult like me will give them. And when I'm helping them read or whatever, they see my nails and ask me about them because I'm friendly and it's okay. I explain to them easily and say "just like Sam's" or "the same as Nate's" and all of a sudden, thick nails aren't so bad. It's a good little PR campaign to help my boys out as they learn to be strong enough socially to answer the questions or handle rude comments themselves. My boys listen to how I respond and hopefully they're learning.
We've also role played at home how to answer questions, especially obnoxious questions. I'm trying to teach them to act as if it's not a big deal, because when they act like it is, or act embarrassed, it only makes the situation worse. I did observe Nate answer a question using the exact answer we role-played. He even did the shoulder shrug when he replied at the end of his simple nail explanation, "No big deal." And the child he was talking to shrugged as well because really it is no big deal if my nails look different than yours. But obviously, that doesn't work every time as Nate and Sam well know. But we just try to educate the kids and it can help a lot.
The last thing I do to help prepare my kids for a successful school year is something I would do anyways because it's who I am. I am very involved in my neighborhood, community and church. As a result, many parents and children know me and my family and hopefully think we're okay. Because we go with others to neighborhood barbeques, community plays, church functions, etc., they understand PC and how it affects our lives. Our kids play together and then they go to school together. And these great parents are teaching their kids about accepting other kids with differences, namely my kids.
Will Sam and Nate have a perfect school year? No, there will always be kids that pick on them, call them names or say other means things. They've already expressed some trepidation about certain children that target them. I know I can't protect my kids from all of life's problems, but like all parents, I will do my best to guide them as they learn the tough lessons of life. Most of all, my boys hopefully will always know that home is a safe place where they can get empathy - but not pity - and lots and lots of love.
As a parent, I've still got much to learn. If you have experiences you can share, or tips or ideas that you think could help us parents of PC children, please write me or post it on the Message Board so we all can learn.
July 2004
Positive Aspects of PC
8 July 2004
So often we hear about the agony of having PC. I will be the first in line to tell you how it hurts, how it's limiting, and how I long to run, run, run. But, since I write to depict life as it really is with PC, to be fair, I have to list some of the positive aspects of having PC. Here's a few:
- I don't understand the meaning of a hang nail.
- I have very flexible legs from putting my feet close to my face to trim sores for so many years.
- Right as I entered puberty, I took the drug Accutane to see if it would help my PC (it didn't) -- however, my complexion was perfectly free of acne throughout my teenage years.
- At Disney World I can go in a special ride line – and my family too. Of course, I figured that out in the evening after having been there all day. But no matter – we went on more rides in one hour than we had all day!
- Another advantage of having PC is after years feeling too proud, I finally applied for and received a sign to hang in my car which allows me to park in handicap parking places. Not only does it save my feet, I'm almost always guaranteed a great parking spot, especially at big events in sports, plays, concerts and so on. And everyone likes to ride in my car!
Another positive PC solution -- I was able to waiver Junior High Physical Education (PE). That means I missed all those dreaded co-ed activities in standard gym issue at a time when I was full of whacky hormones and low self-confidence. Actually, I waved PE in High School too, but everyone tells me even that wasn't as awful as Junior High PE. Instead, I was able to fit extra classes into my schedule that were fun and didn't discourage me. Classes like arts, orchestra, Spanish, debate and journalism. I was even a DJ for my high school's local radio station and the school's sports editor. Instead of sitting in PE classes I couldn't participate in and longed to be a part of, I was able to develop talents in other areas. I might add, I did take PE in college, but then options were greater and more suitable for someone with sore feet.
One of the happiest things that happened to me as a result of PC came during my college years. A music band I just love came to town. The concert was open seating so students lined up at the doors all day to get good seats. Because of work, I couldn't go wait very early. I joined my buddies about an hour before the concert several hundred people from the door. And wouldn't you know it? It just happened to be handicap awareness week. Never before had I received preferential treatment. But there I was with my crutches when an usher came and INSISTED I enter the concert early. I admit I was a little embarrassed. I hadn't put in the time waiting that many others had. Then, of course, I had to take my crew of ecstatic friends with me. Not wanting to seem too greedy, I chose the middle of the SECOND row. We watched the band warm up, goof around, and finally, we enjoyed the most incredibly fun concert I've ever been to. I still smile thinking what a blast that was on the second row instead of on the back balcony. I'd never before wanted special treatment because of my PC, but I must confess, this time I was perfectly fine with it.
Having PC has taught me a lot of things. Perhaps that's another entry for another day. For now, let's just say it's taught me to count my blessings. My feet hurt but I do have feet. I can always find someone with problems a whole lot worse than me. Probably the greatest advantage I enjoy from having PC is a sure knowledge that the people in my life are solid individuals, who have demonstrated by their actions that they are not superficial people who care about looks or what others may say. It's a big positive to know my closest friends are not shallow, but terrific people with strong characters, who look at my heart, not at my beautiful nails and feet.
So friends, tell me your PC positives. Better yet, post them on the message board so we can all be uplifted. Just today, I had to have a cyst removed that had become inflamed and infected. Okay, I'm a wimp and it hurt. After the major pain subsided, I started laughing. The doctor asked what I was laughing about and I said, "Oh my life, I just have to laugh at this." Don't get me wrong, I'm not valiant. Remember I'm on crutches while so many of you are gritting out the walking on your own. But if life is tough, we can laugh or we can cry and it's just so much more fun to laugh!
May 2004
Genetic Testing
26 May 2004
I recently had the privilege of being genetically tested for Pachyonychia Congenita. I am one of the fortunate ones who was diagnosed correctly with PC as an infant. I've heard of many PC patients who for years went undiagnosed or misdiagnosed. However, since we started the PC Project, there was a little doubt that nagged in the back of my head which said, "What if it's not really PC?" After all, there are other disorders that mimic or are similar to PC. And there I was, and my family too, committing time and money to begin research on PC and what if I really didn't have PC at all?
Therefore, it was a privilege to be tested. The testing involved a simple withdrawal of blood at a nearby hospital. Once those first results came back, I was given a 'cheek swab' kit. which was easy to do in my own home. The results were explained to me personally so I could understand them.
Frankly, it felt great to confirm exactly what I have. I say that because whatever the diagnosis was, it would not have changed the fact that I have thick nails and sore feet. At least now I knew that we at PC Project are focusing on the right target. I also very much like knowing which specific gene is mutated so that the research can focus exactly on that specific problem. I hope you all have this opportunity and I am grateful to PC project for making this possible for me.
Infected Nails
7 May 2004
Today, I'm typing with only half of my fingers. If my corner is to describe "Living with PC" then today is the day to tell you something I dread about PC life: Infected nails! I rarely get them. But lately, I've had a slew of them. A week ago the nail and surrounding skin on my pinky finger swelled up like a big red balloon. A thick red line ran from the nail to the end of my finger. I soaked my finger in warm water until the nail was very soft. Then I used a clean, sharp razor blade and gently cut through the nail just a little bit to let out the thick, yellow pus. Then I soaked the finger again to get out any more pus. Because the nail bed was exposed, I applied antibiotic ointment and a band-aid for protection. Pus has continued to ooze out of the nail for the past week, but the red streak did go away. I played the odds that the nail would heal on its own without an antibiotic. If I ever see a red streak on one of my boys, it's off to the doctor we go – that day .
I've had another infection on my thumb nail that I was able to lance as well, but it didn't hurt as much and now it's healing. However, I woke up at 5:30 this morning to the throb of another swollen nail on the same hand. As usual, the pain was so bad I couldn't sleep. Once again, I soaked, lanced, and bandaged the nail. But the pain is so intense, I can hardly think about anything else. This nail also has a red streak traveling from it up my finger. I also have three nails on the other hand that have become red and swollen today and some of the blisters on my feet have been infected as well. It's like infection is raging through my body.
This time I'm not playing the odds that the infections will heal on their own. This kind of pain is frustrating. Something as simple as putting on socks is tedious with so many nails affected. So, soon I'll be picking up a prescription for an oral antibiotic. Fortunately for me, I have a good relationship with my dermatologist. He trusts that I will only ask for a prescription when I truly need one. And he can trust me. The last thing I want to do is overuse antibiotics – especially since I rely on them so much when infections get this bad. I'm grateful for my doctor, because when I really need an antibiotic, I'm typically in a lot of pain and going through the motions of a doctor's visit is only more difficult. But if he ever feels like he needs to see me, he'll let me know and I'm happy to come on in to get his medical care.
And today I need it the medicine. I'm already dreading the three nails that are already starting to throb but don't seem to have pus in them yet. The nail on my pinky finger that's healing is still oozing pus, and the one I lanced this morning, well, let's just say when something hurts this much, it's hard to focus much on anything else. My boys are coming home from school soon. We'll go to piano lessons, the pharmacy, and then the annual school carnival. At the carnival, while my kids go from activity to activity, I plan to find a spot on the grass to sit because my feet are sore from the heat of the day and yes, my fingers hurt so badly I can barely stand to touch anything with them. I've no doubt, the many parents I know will come and sit with me and we'll chit chat about kids, school and summer plans. And that will be good, because they will have no idea that they are keeping my mind off my pounding fingers. I'll be happy for any diversions while I wait for the antibiotic to fight off the infections so my nails can get back to "normal".
April 2004
Spring Break
8 April 2004
The boys are home, so there's a lot of family time this week. Over the past few weeks, I prepared the patient-to-patient tips (posted on the For Patients section of this website). It was great to read all of the emails sent to PC Project and sent to me. I also went through all the information on the Patient Message Board. We're discussing many of these comments with various physicians. I've been given the assignment to test a couple of things and will report what I find. While the scientists search for the real cure, it will be great if we can cooperate together and find suggestions to help one another lessen the effects of PC. Have a wonderful Easter!
Big Brother
19 March 2004
One of the most traumatic days of my life as a mother was when my friend and neighbor called to tell me about an incident on the school bus. Sam and Nate had already come home from school that day and had reported nothing unusual. I'm a mom who fortunately is able to be at home when my kids come home, and each day we go through the routine of talking about school. So I was surprised when my neighbor reported that her twin boys, who were in the oldest grade on the bus, told her that a bunch of kids who got off at a different stop, all paused on their way off the bus to spit in the faces of my sons, Sam and Nate, because of their nails. Sam was 7, Nate was 5. My friend was concerned not only for my boys, but also for hers, because she said her boys were so mad they were planning to pound those kids the next day. We worked it out another way, but my point in sharing this now is this: I'm grateful for those "big brothers" Sam and Nate had on their bus ride home. It made me remember my own 'big brother.'
Though I was often asked, perhaps sometimes rudely, about my nails, I never as I child received the ridicule and persecution my boys deal with today. Has the world gotten meaner or was it because of my big brother? Greg was only a year ahead of me in school and everyone liked Greg. They called him "Smiley" from grade school through college. He played basketball. The girls liked him. But mostly he was just a nice guy. In junior high, we rode the bus. At the end of the day, when the bus dropped us off, we had only a block to walk home if we cut through a field. But a person with PC starts a day fresh and ends it sore. I don't ever remember asking Greg to carry me home. But many, many times, he would take our backpacks, my violin, and his trumpet and run them home. Then he would run back and piggyback me home. Lot's of kids got on and off at that bus stop. But looking back, I don't think anyone would've ever dared say anything mean to Greg's shy, funny looking sister. The year he went to high school as a 10 th grader was the year 9 th graders were moved to high school as well, so went to high school at the same time. For the next 3 years, we drove to and from school in an old green truck. I didn't hang with him at school like a pesky little sister, but my claim to fame was that Greg was my brother and because he was respected, I've do doubt some of that respect trickled down to benefit me. Yes, I had a senior year without him, but by then I was gaining some of my own confidence.
I am so grateful for a 'big brother' who was never embarrassed to be with me. He certainly made the road easier for me. Now, as my kids deal with the cruelties of other children, I say 'Thanks for good friends and neighbors who are courageous enough to step in and play that part.'
Doctor Visits
3 March 2004
After setting up a new home in a new town after I married Dave, I went in search of a local dermatologist because, well, that's what we PC patients need -- a good dermatologist. Besides, I liked to go to one every couple of years, just to see if there was anything new in the treatment or cure department. I always thought I d hate to not be cured simply because I didn't make a doctor's ppointment.
Anyway, I made an appointment with my assigned HMO dermatologist. At his office, I introduced myself and showed him my hands and feet to see if there was anything he might have to offer by way of treatment or care. He excused himself from the room for quite some time. Finally, he came back into the examining room with a big thick medical book. He pointed to the open page and said "You have Pachyonychia congenita."
I hope you're smiling while reading this. I thought it was very amusing that a doctor assumed I'd lived 25 years and did not know why my nails looked the way they did or why I walked with crutches. Needless to say, I graciously thanked him for the information and never made a return appointment.
Now, don't get me wrong. I have ZERO bad feelings for this good doctor who wanted to help. It's just an example of how rare PC is and also, how important it is to find a good dermatologist who cares about you as a patient and is familiar with PC. I would even go so far as to say it doesn't even matter if the doctor doesn't know about PC at first as long as he or she is willing to be educated and understand what you're dealing with.
I know from many of you who have contacted us, that others have had similar humorous and even some sad or unfortunate experiences with different doctors. We hope our website (and our brochure) can help with communication with doctors as well as with others. We are grateful that already doctors have found our website and contacted PC Project as a resource and referral for them to get help for their patients. Yes, our goal is THE CURE, but in the meantime, we want to make life as pleasant as possible along the way for both PC patients and the excellent doctors who work with PC patients.
February 2004
"So...did they find a cure?..."
21 February 2004
I recently had the great opportunity of meeting the most amazing people. I just attended the first PC Symposium ever. I say "first" because there will be more. I wish everyone interested in PC could have been there to listen to incredible minds talk about us – or at least our genes and our skin. I confess, I was a bit nervous to meet doctors who I know think on a way higher level than me. (I'm more on a "What shall I fix for dinner tonight?" level.) But, I soon realized that these great people are just that – people - albeit very smart people, but very GOOD people. My only hope is that they had as good a time as I did.
"So...did they find a cure?..."
As soon as I saw my children after the big weekend, Nate asked, "So did they find a cure for Pachyonychia?" Sam was a little more realistic and asked if we made some steps towards finding the cure. I was happy to report to my boys – and to you – that the first steps have been made. I'm absolutely convinced we will one day reach our goal.. We are committed for the long haul. There's a 'summary' of what's planned on the Events page under 2004 Symposium.
My one worry, well, not worry, just a thought, is that I didn't look "pained" enough to truly represent what PC patients actually go through. We from the PC Project kind of laughed about it afterwards that maybe I seemed too 'okay.' After the first night, my feet were hurting so badly, I upped some pain medication so I could enjoy the Symposium. You know if your feet are hurting to a certain point, you don't care much about other things.
Needless to say, if any doctor ever reads this, you can rest assured I paid dearly come Sunday night and Monday. The pain medication doesn't stop the damage you do when you walk and when the medication wears off -- the damage remains. Don't feel badly for me – I'm smiling while writing this. I think I'm basically a happy person, but that doesn't mean I don't wish to ski with you all someday! And that goes for all the other PC patients out there.
People Who Care
10 February 2004
Tomorrow, the first guests for the PC Symposium will be arriving here in Utah. How I wish you all with PC could come and listen to the presentations and discussions. I promise we'll keep you informed on the website about what happens. As a person with PC, I understand how anxious you are for ANY information about progress towards a cure. Right now, on the eve of the symposium, I'm very thankful now for the people in my life who are sacrificing so much time, energy, money and even sleep to make this symposium a reality.
It makes me reflect on my life as a single person with PC – back when I felt like I needed to hide my nails and tell stories – or should I say "tales" - about why I sometimes used crutches. Who'd have thought then that I'd marry into a family that would not only accept me the way I am, but work so actively to find a way to relieve my pain.
Sometimes I've felt like because PC is so rare, people may be interested in it in passing, but no one besides the family I was raised in really cares. After all, everyone has problems of some kind or another. So for me to now be surrounded by people who cheer me on, don't pity me, and who are working so actively to help the PC Project cause, well it is absolutely humbling and overwhelming. I am extremely blessed.
I share this because I want all of you who read this "Corner" who have PC to know that there are people out there who not only care about me – but they care about you. People involved in this project who don't have PC weep when they read your e-mails. They are also uplifted and amazed by you. We may be strangers in that we haven't met, but that doesn't mean we don't care about each other and want each other, even perfect strangers, to have better lives. We're all in the same human family and we're all here to help one another, including those with PC.
January 2004
Pain vs. "Unsightly Nails"
5 January 2004
Note: as we work on the PC Project goals which include a Registry and a questionnaire to find information which will be useful to researchers, we've had some discussion as to what the major problems are for PC patients. Here is Jan's informal response. We'd like to hear your informal comments as well - please send us your thoughts on this to firstname.lastname@example.com. PC Project Webmaster.
PC. As to the pain verses 'unsightly nail' issue, I'm not absolutely certain, but I've always thought there are degrees of severity to PC. In other words, side effects such as sores on the feet may not be as bad or even not there at all for some with PC. Many years ago I was told by a doctor that my case was one of the most severe. I can't remember which Dr. and have no documentation - it's just been in the back of my head. If that's true, it really could mean the nails are the most disturbing thing. I've corresponded with a woman who had the nails removed -- a painful procedure which I've opted not to do. I also heard from a mom whos child's PC nail got caught in the car air vent because the nails were so long. It surprised me that someone could let that become such a problem as we clip and trim daily. I guess the point is, there are people out there with nail issues and they may be more prominent particularly if side effects such as painfully sore feet aren't severe. As a teenager and younger, I hated the looks of my nails, as do my young boys do now. For example, for Nate (age 6) right now, the nails are a big consideration. But when his feet start hurting like Sam's (age 8), the nails will probably take back burner. Also, as a more confident adult and in a secure relationship with a man who loves me, t he nails are so secondary, I hardly notice them. But I can see people perhaps in a different situation really struggling over the nails. I continually hid my nails throughout the dating scene and in social situations. And I still sometimes get annoyed when strangers in public places loudly ask me what's wrong with my nails - like a checker with a long line of people behind me who stopped everything to inquire about my nails. What are your thoughts?
Day-to-Day Care
January 2004
This is Jan's response to a request to describe for a dermatologist the basic day-to-day care for herself and her boys.
This is my own personal approach and should not be considered as 'advice' or medical instruction. It is just what I personally do for myself and family --
To care for the sores on my feet, I use three main tools:
- Large nail clippers: I cut pieces of sores that are awkward or dangle and hard to get to. I also use the edge to scrape at soft sores that are too tender to touch with a pumice stone or too bloody to touch with a blade.
- Double-edged razor blades or a scalpel is my favorite choice. A doctor's scalpel with interchangeable blades works well for whittling down the callused sores. I prefer the razor blades because they bend and you can slice more sore at a time. Don't just start whacking - be careful not to go too deep too soon. You need to whittle at the sores. I regularly make myself bleed because I'm hurrying. The goal is to cut the sores down as much as possible without reaching live skin. I trim my boy's sores with the blades. I usually have them bathe first so the sores are soft. With me however, I sometimes like them soft, but sometimes I like them hard. I don't usually soak my sores first, because if they're too mushy, they hurt. (My boy's sores are mostly hard calluses, while I have some that are really mushy right now and that makes it very difficult for them to be sliced.) Also, one blade per trimming. They get dull really fast and to cut with dull blades is awful and not nearly as safe.
- Pumice stone. This is so handy when sores are really dry. Take a stone to the dry sores and the stuff will sluff off easily. Many times I trim with the blades then use the pumice stone to smooth over the rough edges. And not all stones are created equal. You don't want to use a fancy, smooth one. You want the roughest, jaggedy one you can find. I sometimes buy several to get the perfect one. But nothing feels better than taking that stone to my tired feet. Now, if my feet are sore after a long day with shoes, there's no way I'll touch them with the stone. But if they're not too bad and VERY DRY, the stone is great.
I do have a little power tool sander, but I don't use it much because, like I said, every sore is different.
Notice, the tools I use depend on the softness of the sores and the condition of the sores. My sores vary even on each foot. In one trimming session, I typically use all three tools. I have a special trimming box for my tools and a big piece of slick card board to catch the shaved sores which are thrown away. That keeps things tidy. I also wash my hands WELL before and after. When I finish trimming, I always soak my feet in water and wash them with a good soap. I use Dial. I've also used Phisoderm (a prescription) soaps. Then I dry my sores and lather them with Vaseline.
As a doctor, you might tell your patient to always use rubbing alcohol on the blades or between cuts as a precaution against infections. Like I said, I just use a fresh blade for each trimming session because I do it so much.
I know when I let my sores grow too big, they hurt WAY more. Even my boys come to me when their sores need trimming. They know it hurts more. Also, my feet don't get infected nearly as much when they are trimmed. If the sores get too big, they get a whitish layer underneath them that will even fill with pus at times. And even if they don't, that whitish stuff is much more tender and sore. My feet also feel hotter, if that makes sense, when the sores are too thick. It's just an incredibly uncomfortable feeling, besides the fact that I feel like I'm walking on rocks. Also, a white film of skin will tend to spread out from the yellowish sore and again, fill with pus.
I trim my boys nails after they take long baths and with the same combination of large clippers and razor blades. Keeping the nails trimmed and groomed seems to help avoid infections that appear to occur more often if the nails get too large
Trimming sores does take practice I started young with a scalpel and I may have my boys do the same. I think you probably could've figured this all out on your own. I hope I'm not insulting your intelligence.
CREAMS, OINTMENTS, ETC. I've had creams with acid prescribed to me before. I can't remember a name of any, but they've been more a bother to me because sometimes, I don't want my feet that soft, because the creams make them more tender. Also, I still have to get the soft sores down. One more thing -- when pregnant, my sores look like bloody oatmeal. One well meaning doctore gave me a cream I put on my sores. I thought I'd die, my feet burned so badly. I finally called my uncle, who is a dermatologist in San Francisco and read the prescription to him. It had over 40% acid in it. The consistency was like Vaseline. I stuck that stuff into my mushy open sores and my feet burned for another day even though I tried to continually soak it out. I've yet to experience anything like that kind of pain.
I only bring it up because a lot of doctors have prescribed creams with a little acid for me and they've been ok. I'm just saying, it depends on the state of the sores. Someone might find it useful. But again, I'm all for the good old fashioned tools.
I do like Vaseline A LOT. I put it on each morning before I put on socks. My feet feel much better in my shoes. I also do it at night after I've trimmed my feet. I think it's just a balance between having sores that are too mushy or too dry. If they're too dry, they hurt or sore crack. Foot care is so much figuring out what's best for your feet at different times of the day, month, etc.
Also Bactriban and Neosporin types have been helpful to put onto open sores. And if pain is really bad on an open sore Americane is great. It's a hemorrhoid ointment, but I went through tubes and tubes during pregnancies because my sores were all open and mushy and it numbed the pain.
Recently one of my boys had an infected nail. That means the nail was filled with pus, the surrounding skin was red, and the nail was extremely painful. When a PC nail is infected, it usually pulsates or throbs so it's hard to ignore. Of course, the fastest way to pain relief and healing is to relieve the nail of the pus. That used to be a traumatic experience, but now we've found what we think is the best way to get that pus out as painlessly as possible. If you've found something better, please let us know!
First, we soak the nail so it's good and soft. In the case of a young child, that's easily done with a long bath. While the nail is still soft, it can be penetrated with a double edged razor blade and large nail clippers if necessary. Because of the pressure involved in cutting the nail with the large clippers, we use them only if the nail has an extra tough edge. You use the clippers to get past those edges so you can work with the razor blade. But if you don't need the clippers, stick only with the razor blade. It's our favorite tool, and we like the double edged blades because of their flexibility. With the blade, I gently slice off parts of the soft nail until the pus is reached. Once the pus runs free, the nail needs to be washed with good soap and soaked again in warm water to continue to draw out remaining pus. Sometimes Neosporin and a band aid will help my children feel better about the whole process. Often, just having the pus out and the intense pressure relieved makes the pain lessen almost immediately.
As you get older, you react more quickly. The moment I feel that 'thumping sensation," I head for my tools and take care of it. It's harder with young kids as they may ignore it longer.


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BMC Racing Team's Manuel Quinziato registered his best finish since 2010 with fourth place on the final stage of the Eneco Tour of Benelux after teammate Daniel Oss figured in a small chase group late in the 208-kilometer race.
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Quinziato said he and the rest of the BMC Racing Team were motivated to get a solid result after a crash on Saturday's stage knocked world road champion Philippe Gilbert and Taylor Phinney out of the race. "The five guys left here really wanted to try to win the stage," he said. "We did everything we could and Daniel did a nice job We tried so we can be happy with that." With 30 km to go, Oss attacked out of the peloton and began a chase of breakaway group that had splintered. "Without Philippe and Taylor, we had to do something," Oss said. "I tried for the team and for myself and for my teammates. It was also good for Manuel. He was able to stay safe and quiet and prepare for the sprint." Oss and his group were caught before the climb to the finish of the Kapelmuur, where Quinziato sprinted to his best individual result since another fourth-place finish on Stage 7 of the 2010 Tour de Suisse. BMC Racing Team Assistant Director Fabio Baldato said he happy with the display of a never-give-up-attitude. "We saw the team fighting today," he said. "Yesterday we lost everything. Today, I am proud of what the riders did."
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Very nice..congratulations
Very nice looking bear. Big congrats on getting it still hunting - definitely not an easy thing to do. I too really like my ASAT 3D leafy suit and attribute some of my ability to get close to animals and not spook them to its ability to break-up my human form so well.
Thwack and its down with small broadheads!!! Nice a 30yard stroll and it all over.
Passed through the shoulder blade and into the vitals, down in 30 yds; that's why I like small broadheads.
Did you get a pass thru with the moab...?
& congrats!
The area I was talking about is Timber company property, behind locked gates, but accessable for the general public by foot, or bicycle, no moterized vehicles, but it is subject to fire control issues. Cannot build a blind on Timber company property. Have had one trail camera stolen, and one broken trying to steal it.
Was this gov land , or guided. I want to go on a bear hunt next spring, it will probably have to be guided, I know nothing about bear hunting. I know north Florida was full of black bears when I hunted there.
Some of us Oregon guys have plenty of bears to try and harvest. I've been chasin the one in my avatar ever since he showed up on my trail camera, ( the photo over there in the upper left ) 15 minutes after I changed the batteries in the trail cam. In the same area, we ran a string of 3 cameras, over that summer, we indentifed 12 differnt bears, all within a 3 mile strech, 6 miles from home. He's smarter than I am, so far! Photos below where taken a week apart, same spot. Slightly differnt angle, 3rd pic is what changed the angle. In the last pic, you can see the stick that has the two white dibbons on it, laying down, the result of the 1st pic. I figure that he's 42" tall at his shoulders.
nice kill!!!
Congrats on a nice bear Capt. Wish we had bear here in Kansas. lol
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Reporter's Handbook: Key Industry and PhRMA Facts
Key Industry and PhRMA Facts
Research and Development (R&D)
Time to develop a drug = 10 to 15 years
Development Costs: Average cost to develop a drug
(including the cost of failures)
Early 2000s = $1.2 billion
Late 1990s = $800 million
Mid-1980s = $320 million
1970s = $140 million
R&D Spending by PhRMA Members
Year | PhRMA Member Spending
2013 $51.1 billion
2012 $58.5 billion
2011 $49.5 billion
2010 $50.7 billion
2009 $46.4 billion
2008 $47.4 billion
2007 $47.9 billion
2006 $43.0 billion
2005 $39.9 billion
2004 $37.0 billion
2000 $26.0 billion
1990 $8.4 billion
1980 $2.0 billion
Economic Impact of the Biopharmaceutical Sector
Direct jobs = More than 810,000 in 2013 (most recent data)
Total jobs = About 3.4 million in 2013 (including indirect and induced jobs, most recent data)
- Medicines approved 2001-2011 = 340
- In the 29 years since the Orphan Drug Act was established, 398 orphan drugs have been approved
- Only 2 of 10 marketed drugs return revenues that match or exceed R&D costs
Medicines in Development
2011 = 3,240 compounds
2001 = 2,040 compounds
Value of Medicines
- Cancer: Since 1980, life expectancy for cancer patients has increased about
- 3 years, and 83% of those gains are attributable to new treatments, including medicines. Another study found that medicines specifically account for 50% to 60% of increases in survival rates since 1975.
- Cardiovascular Disease: According to a 2011 statistics update by the American Heart Association (AHA), death rates for cardiovascular disease fell a dramatic31% between 1998 and 2008.
- HIV/AIDS: Since the approval of the antiretroviral treatments (ART) in 1995, the U.S. AIDS death rate has dropped by more than 80%.
Generic share of market
2011 = 80%
2000 = 49%
About PhRMA
The Pharmaceutical Research and Manufacturers of America represents the country's leading biopharmaceutical research companies, which are devoted to inventing medicines that allow patients to live longer, healthier and more productive lives. PhRMA companies are leading the way in the search for new cures.
PhRMA members alone invested an estimated $51.1 billion in 2013 in discovering and developing new medicines.
PhRMA is headquartered in Washington, D.C., and also has offices in Albany, Atlanta, Baton Rouge, Boston, Denver, Indianapolis, Olympia, St. Paul, Sacramento, Amman and Tokyo.
The association is governed by a 31-member board of directors. There are two categories of membership in PhRMA:
Any person, partnership, corporation, or subsidiary, division or unit thereof, in the United States of America or any of its territories or insular possessions, significantly engaged in the manufacture and marketing of finished dosage form ethical pharmaceutical or biological products under his or its own brand names for the cure, alleviation, mitigation, treatment, prevention or diagnosis of disease, and significantly engaged in pharmaceutical, biopharmaceutical or biological research and development of new molecular entities or new therapies, preventative, or in vivo diagnostics, or new systems of therapy, prevention, or diagnosis and who will continue to conduct such research and development.
Associates shall be persons, partnerships, corporations, or subsidiaries, divisions or units thereof, not eligible for membership as defined above, and not subsidiaries or divisions of or owned by a company engaged in the manufacture or marketing of finished dosage form pharmaceutical or biological products, who are: Engaged in research and development (significantly engaged, for profit, in biological research on their own behalf directly related to the development or production of ethical pharmaceutical or biological products for the cure, alleviation, mitigation, treatment or prevention of disease).


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DJ Ev & Stretch Armstrong, Back To Back
This mix TAPE that my man DJ Ev and I put together in '96 was a little ahead of its time. Why? Well let's see- great tunes that hadn't been released, exlusive verses from some heavies, no filler, great cuts, and a really crafty mix with all the right sprinkles and touches. It was pre-Pro-Tools (I think I was using Session 8 at the time to do my radio edits for Hot), and we made it on an ADAT with a sampler, doing punch-ins. On the real, Ev has always been one of the most gifted djs on the cut. Though it says that there is an Ev side and a Stretch side, that isn't really how it went down. We basically ran around town for a few days, collected the DATS, recorded some people and then spent a day and night in my home studio til it was done. I was never into making mix tapes or later, cds, and when I did, it was because someone like Ev was persistent enough to convince me. Later, I did some cds with Whoo Kid, but I saw where that was going pretty quickly. I just had no interest in being affiliated with music that I didn't like, and Whoo Kid, who wasn't even a dj, was all about the names, not the music. The first Murder Mixtape we did was ill, but the third was suspect. Anyway, back to DJ Ev- the first time I met Ev was at a party in Manhattan, and he was cutting up doubles bonkers with a lit cigarette in one hand. Talk about nonchalant. I think Ev remains less known than some other djs because people in the business always saw him as a serious threat. I mean, really- you ever notice how some of the nicest djs get overlooked and some real cornballs get serious shine? You know the drill.
DJ Ev & Stretch Armstrong "Back To Back" Side A
DJ Ev & Stretch Armstrong "Back To Back" Side B
33 comments:
- Pete said...
I really liked the murda mixtapes, especially the one where you two were in the whole Matrix getups.
In High School, I remember walking up Fordham Rd, after class to get your tapes when they dropped. Needless to say those tapes helped a scrawny white kid with bad hair and unflattering glasses, with zero sense of rhythm get through the first two years of high school.
Any chance of seeing some of the late-era Hot 97 shows on here? I used to listen to those late on Sunday nights. One of the more memorable shows was with G-Dep and Black Rob. I think I may have those freestyles on tape somewhere back home.
What was on the cover of the third Murda Mixtape?
- April 5, 2007 at 10:50 AM
- Ya-Sin said...
Pretty good stuff. I enjoyed the Murder Mixtapes when it came out (even though u might not have)Maybe a lil bit off topic but u have any Funk Flex mixes back when he was still a guest Dj for Chuck and Red or his early days at Hot? He was serious in his prime
- April 5, 2007 at 12:43 PM
- Anonymous said...
I enjoyed the Murder Mixtapes (even though u might not have). On a side note, u have any Funk Flex mixes from when he was still a guest dj for Chuck Chillout and Red or his early Hot97 days? Say wat u want about him, dude has skills, especially when he was in his prime
- April 5, 2007 at 12:47 PM
- charlie said...
this website is the truth. it's like i had a dream and it actually came truth. i ain't even being corny yo. stretch thank you for this shit. i especially liked hearing the artifacts demo. you gotta post some more demos of anyone bro. peace thanks again for this shit
- April 5, 2007 at 1:44 PM
- enigmatik said...
Thursday Night Throwbacks...thank you very much!
- April 5, 2007 at 5:52 PM
- samba. said...
- This comment has been removed by the author.
- April 5, 2007 at 6:06 PM
- samba. said...
dayyymm... seriously dope! thanks for this
- April 5, 2007 at 6:07 PM
- Anonymous said...
I can't even say how much we appreciate this. I'm sure you already know.
Whoo Kid is gonna send yayo to slap your family.
Stretch I got some stuff for you. Are you interested in old marley/red alert/ pete rock/ chuck chillout/ etc tapes?
and TONS of westwood?
p.s. Can I come To your house and digitize every tape you have? ..i kid..
happy passover kid..
- April 5, 2007 at 7:34 PM
- Lord Vas said...
Didnt you have that mixtape with puffy, had that dope freestyle with Craig Mack & Biggie, any chance of digging that up???
- April 5, 2007 at 7:52 PM
- Create And Hustle V. 2.0 said...
i love this blog glad you do it
- April 5, 2007 at 10:59 PM
- SLurg said...
>Didnt you have that mixtape with puffy, had that dope freestyle with Craig Mack & Biggie, any chance of digging that up???
...And a dope freestyle with Redman as well !!!
- April 6, 2007 at 2:57 AM
- illest said...
I have this tape and the wax. And that Pete Rock Strange Fruit buttas was my shit. Did you have any Pete Rock buttas like some exclusives from futureflavas? I know he blessed you with some joints.
- April 6, 2007 at 5:30 AM
- DJ SOUL said...
Oh shit... U took it back to the fall of 96...
Looking at the artwork, I have to ask; whatever happened to P-Type graphics and Reg P?
Those dudes had the mixtape game on lock when it came to providing artwork... All while they worked at Kinkos downtown... Now that's classic...
- April 6, 2007 at 9:48 AM
- ozzino said...
damn, got this tape from a friend of mine who made a trip in NY.
I defenetely used to LOVE it!
- April 6, 2007 at 10:12 AM
- Anonymous said...
much appreciated, as always!
could you please post up the tracklist as well?? or anybody?!
lookin forward to the b-side.
one love
- April 7, 2007 at 4:39 AM
- Anonymous said...
Can't wait till you post the B side! Thanks so much for this
- April 7, 2007 at 9:05 PM
- Pete said...
Stretch, we need side B.
I'm going to download both sides and dub them from my laptop to a blank tape.
- April 8, 2007 at 9:42 PM
- djducats said...
Someone slid me part of this mix back then... one of the sickest intro's I've ever heard. Good to hear a quality version finally and in it's entirety!
Thanks Stretch!
- April 9, 2007 at 6:30 AM
- Dante said...
I have this in the crib!!! Ill!!!
I want some of the Hot shows as well. Hook it up please...
- April 9, 2007 at 8:43 AM
- s. phill e. said...
Yes, that would be cool to see some of Stretch's Hot 97 shows posted on here. I was feelin the XL Radio show when it was on in the late 90's..one of the few decent offerings that station had along with Future Flavas! Aside from that I am definitely feelin Stretch's comments on the DJ scene...that does seem to be the case. There are some wack-ass dudes out there that call themselves dj's when, as I believe DJ Premier put it, they are merely putting out "compilation cds", NOT MIXES.....Well, this Back to Back joint is the shit. I have never heard it before until now and I am thankful as fuck!!!!!!! I will be bumpin to this for a good minute...PEACE btw, Stretch, how about anything from the South just to switch it up for a sec...got anything interesting you can post along those lines?? I've been living in FL for a good minute now and the "dirty dirty" is definitely growing on me...Ever since I heard the Youngbloodz first album, I have been a believer....haha...Those boys can put it down among many others in the South...Yes, there's lots of garbage, but quite a few gems....aight Peace
- April 10, 2007 at 7:58 PM
- Anonymous said...
YO! dem phone numbers still work?..j/k.
peace homie
- April 10, 2007 at 8:39 PM
- Anonymous said...
Shit os too dope, this like some sort of b boys wet dream! Much respect to you and yours stretch and cucumber slice!
- April 11, 2007 at 12:43 PM
- Sentenza said...
Stretch man, this blog is the illest. Keep droppin the shows man, they're rediculous and all Im listening to these days. Major props.
soulbrothernumberone.blogspot.com (needing an update)
- April 13, 2007 at 8:51 AM
- Agent Moulder said...
Bananas! I rocked this tape 'til it almost popped. Shit reminds me of when you and then Ev were over in the UK with Semtex and I. The good ol' days. Long time no speak Stretch! Hope all is good. Dillon
- April 17, 2007 at 2:27 PM
- Anonymous said...
man thank you for puttin this tape up. This shit brought back so many memories of me hittin up beat street in downtown BK for the ill mixtapes..throwin it in the barely workin AIWA cassette player..This joint got ridiculous burn..especially that Sky is High joint by ghost...
- April 18, 2007 at 2:52 PM
- Anonymous said...
I got this orignal tape althought the cover is black and white. Thanks for postin this old stuff Stretch and givin the back stories.
- April 22, 2007 at 9:10 PM
- Anonymous said...
Hey Stretch do you have the DJ Ev Hotter This Year mix tape? Can you post that up here.
I have several of your old tapes, just need to find them at my parents house in Brooklyn and will give you a shout when I get them.
- May 9, 2007 at 8:01 AM
- Phatdaddy151 said...
Yo Stretch,I definately still bump this one in my deck, I have been tryin' to find U 4 years YOU WILL BRING THE REALNESS BACK I kno Its ya man from back ins da day dat used to run w/ Thats Them AKA Artifacts,Kool Ass Al
- May 12, 2007 at 5:17 PM
- Crucifixio Jones said...
I was stationed in Japan 'round '96-97 when this tape came out and a female friend of mine sent this to me; I must've played that one minute of CNN's "Illegal Life" over and over until the tape nearly broke. Crazy thanks for digitizing this and throwing it up on the blog! I hadn't heard it since back when I had that tape and for me, it was the first time I heard "Illegal Life"; after I got CNN's actual CD, I was DISAPPOINTED with the official version. For me, this joint is the realest!
- May 30, 2007 at 11:19 PM
- Kwis said...
This was one of the few mixtapes I managed to snag living in Cleveland. I thought all mixtapes were this fantastic. I remember making my first trip to NYC in 97 and being very disappointed to find out they weren't. Thanks Stretch.
- June 10, 2007 at 10:38 AM
- MoneyMarc said...
Classic!!!! I still have this mixtape chillin' right in my home studio was just lookin' at it the other day. 96 it's bee a long time
- December 18, 2007 at 7:07 PM
- carrybagman said...
I'm just rockin this tape now, better late than never...thanks for the massive posts stretch...if you asked me and my friends about hiphop in 96 we would've said it was all over...wrong once again...
- January 11, 2008 at 12:18 PM
- Doete said...
Ewwww...Not the Back 11 Back ft: Stretch & EV!!! This is one of the dopest tapes I have. I still got this in my colletion. My man Drastik (Pgh) had Ev come to Pittsburgh, Pa. a few times back in the day. I got stuck bumpin this tape for months when it came out. Now Ill bang the cd for a minute! Thanks Stretch!
- January 19, 2008 at 1:01 PM


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We reserve the right (but are not obligated to) review all submissions and edit or remove any review in any manner which we deem necessary. Your review should be posted within seven days. Filter by rating: 5 Star: (0) 4 Star: (0) 3 Star: (0) 2 Star: (0) 1 Star: (0) 5 out of 5 worth every dime Written By George, Alexandria, Ky on Thursday, August 26, 2010 These are the best marine speakers I have ever heard. Even with the stock Sony head unit the results are out standing. I would highly reccomend these speakers to anyone. Especially those who really enjoy thier music. At first I thought they were a little expensive, but after the fact I must say they are worth every penny. 13 out of 13 people found this helpful Was this review helpful? Yes | No 5 out of 5 JL Audio M650-CCX-CG-WH Written By supercarbon, ND on Friday, June 11, 2010 I got 4 of these, unable to find a review I wasn't sure what to expect. All I have to say is WOW! 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GD, congrats on the house. I have been busy all week and not been on here much. Happy moving.
GD, congrats on the house. I have been busy all week and not been on here much. Happy moving.
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Congratulations grave,Glad it came together for you and family.
I want to die peacefully in my sleep, like my grandfather.. Not screaming and yelling like the passengers in his car.
got most everthing moved on sunday.i still have all the kids back yard stuff to grab but we are moved in for the most part.cant find the camera to take pics of the house but i will soon.today i took out a section of cupbords that where in the way,it opend the kitchen up a bunch.next month on dropping the trees.nice to be home.


text:
"The supreme happiness in life is the conviction that we are loved, or rather, loved in spite of ourselves.
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"Victor Hugo Quotes." Quotes.net. STANDS4 LLC, 2014. Web. 31 Oct. 2014. <http://www.quotes.net/quote/38605>.


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The Professional, Dansko's flagship style, offers total support and comfort.
Available in these colors...
Thick yet supple leathers without additional dyes keep the leather breathable, durable and comfortable.
Polyurethane (PU)
Dankso Stapled Clog outsoles are designed to be suitable in workplace environments where excesses of vegetable oils and animal fats are present. Slip resistant tests have been carried out by SATRA, the world's leading research and technology organization for the footwear industry.
Dansko Stapled Clogs feature:
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