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Team Challenge, Las Vegas, December 2nd, 2012

Hey remember me? I used to blog here. LIfe got in the way and I’ve been a little MIA.

While I was gone I ran this little race called The Las Vegas 1/2 Marathon, oh you know, NBD.

Check that. It was a total big deal. Here’s how it went.

We arrived in Vegas on Friday and the race wasn’t until Sunday night. I had never been to Vegas before so I was pretty pumped to see the city and try to soak it all in. Friday night my team went out to Senior Frog’s and had dinner. I sat at the table with two of my teammates who I didn’t really know. Through the meal and conversations, I realized that I actually knew of my teammates. Well…kinda knew her.

Sometime last year, or maybe even two years ago my sister was getting her hair done at a new salon. Because my family talks about my butt as much as I do, she revealed to her hair dresser that I had UC and MS and that I blogged about it. The hairdresser revealed she also had UC and my sister encouraged her to check out my blog and connect with me because the salon is only a few miles from my house so we must live close to one another. Well, the hair dresser never emailed but it was a cool story nevertheless.

Michelle and I

Fast forward to Senior Frog’s and the hairdresser is Michelle, my teammate sitting across from me at the table. I don’t know if there has ever been a more serendipitous moment in my life.

Saturday night was the pasta party, which is a lot of carbs and inspirational talk. It was nice, a bit of sensory overload, but nice. After we left there, we went to a Cirque show. I chose to see Zumanity because if there is a show with acrobatics AND nudity, I’m all in. It was pretty amazing. Sunday rolled around and the nerves started. The worst part was that the race didn’t start until like 4pm, so I had all day to sit around and be nervous. Normally when I run, I dont eat, or I eat very little before because I don’t want to have to poop especially for long distances. Well this plan was totally shot because our race wasn’t until the evening. I knew that I couldn’t skip all meals before the race so I was really nervous about what to eat. So I went with the safe breakfast foods, soft stuff, everything I’ve ate before and there was no issues. I had walked around a lot the days previous to the race, and my feet were hurting a little so that Sunday morning and afternoon I just sat around in our baller hotel room and lounged in my comfy bed, napped and watched some tv. As race time approached, I really didn’t want to do it. I was worried about my knee and my lack of training and I just wanted to not show up, and just pretend like I wasn’t there for TC.
I’m dumb.

Begrudgingly I started to put on my race clothes, which I fretted over. Too warm? Too cold? Too tight? Not enough pockets? It almost felt like I had never ran before in my life. I was so nervous.

Finally I was out of time. I put on the rest of my clothes, my RFID shoe tag and walked downstairs to meet my team to take the bus to the starting line. This was it. I got down there, and started chatting with my team, and I realized I was ready. I was calm. I was happy. I even had a wonderful young lady who follows me on twitter come up to me and chat with me.

Then I got the phone call. I had actually put on the wrong piece for the RFID tag on my shoe. It was up in my room. The bus was outside and if I didn’t have it, then I wouldn’t have any timing for the race. It wouldn’t even register that I ran it all at. So I panicked. I had to get up to my room and back before my team got on the bus and that was just impossible. Someone told me there would be more busses so I just had to run and hope that I’d catch a bus, if not…I wouldn’t be racing at all. I hauled balls, got the tag, got back and caught the last bus with Team Florida. Crisis averted, although I was panicked and flustered and not cool and collected which was not good. I got to the race, and I couldn’t find anyone from my team, but I did find Lauren from Forward is a Pace, who is responsible for talking me into doing TC.

I waited in line for the bathroom for what seemed like forever, was worried I’d miss the start of the race, and when I got out I saw that my corral was WAY down the line. Balls. So I literally ran to catch up to them. I got to chatting with some more people while we waiting for the start of the race. I had the Girls with Guts symbol on the back on my running singlet, and I had a few people tell me they knew about GWG, which was really cool.

The start line was in sight and as I approached the wind had picked up to what seemed like 50 MPH. It was like a damned tornado out there, dirt and dust flying everywhere with a particular affinity for my eyeballs. But then the gun sounded and it was time to run. The sun had already set, the temperature was chilly but got comfortable when I started to move and as I moved it felt good. I was passing a lot of people, saw many of my teammates and that was really cool. The lights in Vegas at night are amazing and having the whole main strip closed so we could run down it was a really cool experience.

I’ll be honest, I felt like I was killin’ it. I had a great pace. I felt strong, I wasn’t walking. It was like the stars were aligning for me to run the race of my life. The miles were falling away and I felt super good, but then I slowly began to hit a wall. So I ate some GU and kept on chuggin. Along the way I passed a chapel and noticed a TC singlet on the person getting married and I was like “oh cool! Getting married during the race!”. I looked closer, and realized it was one of my teammates. So I stopped running to watch their ceremony, which was awesome. Over all in the race, I stopped once for a bathroom break which was SO awesome. Around mile 8 or 9 things started to get hard. I walked for the first time, which was amazing to me. Like I said, I felt like I was killin’ it. I knew that it was just a matter of the mental battle at this point, that keeping my head in the game was all that was between me and finishing.

I chowed down some more GU, and just kept on crusin. My knees started to hurt a bit, my hips were a little achey, but nothing like how they were in the past. I got to this point where it was much easier to run than walk. Walking was painful, and threw off every rhythm I had. I could see the finish line way in the distance and I knew I was close but it was like one of those trick finish lines where it looks close but you’re in Vegas where buildings are huge and you have no real depth perception. The finish line was far. I started getting annoyed, I wanted to be done. It felt good and I was really proud of myself but I was tired.

Finally. I was there. I was disappointed when there were no fireworks upon my crossing of the finish line. There was no medley sang just for me and no dance crew out there. Not even a damn reporter. Total bullshit. But there were 1,000 photographers shoving cameras in my face as I tried to get to the end of finisher’s section. Every single race photo is awful by the way, which is just super.

So…I did it. I didn’t die. I even liked it. The next day I was sore for sure. I walked all kinds of funny but everyone else at the airport did too, so we all knew it was the 1/2 marathon pimp walk.

I did not hit my goal. My goal was under 3 hours and my time was 3 hours and 3 minutes. When I take into account that I stopped to watch a wedding, I think I would have hit my goal, which is just mildly frustrating. Overall. I think I did pretty well, and I was really surprised at how far I pushed my body and for once, it didn’t push back.

I’m not going to lie…all the training on Saturday mornings and in the heat or the cold…was worth it. That feeling of accomplishment was pretty intoxicating. Everyone is congratulating you, and there was this overwhelming pride of knowing where I had started in 2009 with UC and where I just finished. In Vegas. After a 1/2 Marathon.

It was the ultimate “suck it” to colitis. I was really proud of myself, which is often hard to accomplish when you often feel like a leach on those in your life. TC is really about hitting your own goals and competing with yourself. Sure, I wanted to hit my goal, but I wasn’t racing anyone else there. I was so focused on myself and my run that no one else mattered.

I had a lot of people come up to me before, during, and after the race when they recognized the GWG logo on my back and that was really amazing. Sometimes Charis and I sit here behind our screens thinking that GWG resonates with people, but it wasn’t until I was around people who knew about us that it really rang true. That was an added bonus to the weekend.

Am I done with TC? I thought I would be. I might be. But it comes to Chicago in June…and that might just be too close to turn down 🙂

 

 

My Ostomy Journey

Today is World Ostomy Day, and it has brought up some interesting emotions and realizations for me. I want to share some things with you. Intimate thoughts, and unflattering pictures.

Pre-op surgery # 1. March 2010

That picture is me before my first surgery. Very sick. Very overweight from steroids. Very scared. Very VERY horrified I’d have to have an ostomy. VERY embarrassed of myself and my life. Ashamed. I wrote about what I had expected my ostomy to be like here. I wrote that I hoped I’d look back with fond memories, and in fact, I do. Having my ostomy taught me humility, but more importantly it taught me to laugh at things I couldn’t control. I remember trying to maintain a positive outlook and I just kept telling myself, ok its just 9 months. Its JUST 9 months. 9 Months. Thats it, just get through it.

But then things started to change. Slowly, I wrote this entry just 4 days after my first surgery, and even here I was writing about how I didn’t like my ostomy, but I already felt better. I remember it felt so foreign on my body. I didn’t want to touch it or hear it, or see it, and if I heard that plastic crinkle it just reminded me of the bag I was now stuck to.

My belly post-op. I was embarrassed to really show my ostomy, so I hid it and didn’t really take pictures.
The one and only photo of my first stoma.

It seemed like it took forever for Surgery #2 to get here. There was 6 months in between surgeries, and a lot happened in those 6 months. I tried to return to work, but just couldn’t seem to get my head in the game. I lost my job and my pending time off didn’t really help my case either. I didn’t know a soul with IBD and I desperately searched the internet for friendly words and advice and the only place I really found to be helpful was Jpouch.net. You see back then, HONESTLY, there were 2 websites about jpouches on the internet. We’ve come a long way since 2010. I found a friend, Brevin, who told me about Camp Oasis and how he’d just volunteered, and I thought well, that sounds cool, I’ll look into it. I contacted my local CCFA and had an interview to be a camp counselor which literally consisted of my crying in our directors office because, for the first time ever, I was in the presence of someone who understood how lonely it was. She was telling me about camp and how the kids who come there feel lonely and isolated and that camp was a safe place for them. And I just lost it because I was desperately searching for something like that in my life. My first year at camp was interesting. At the time I really didn’t see how magical it was or how it had changed me. I even wrote that it wasn’t as good as I thought it would be. I didn’t leave with new best friends. I didn’t really leave any different than I had arrived…or at least I thought. What I didn’t know, and I didn’t see was that camp had changed me and empowered me in ways I never even realized. And I would really need what I learned there when my second surgery came and went and was unsuccessful.  That first year at camp wasn’t about the people that I met, it was about what I learned about myself and that is what I took away.

Surgery #2 was supposed to be my second step and I was supposed to get a loop ileostomy and have my jpouch created and put in place to heal for another 3 months and then I’d be done! That didn’t happen and I was devastated and depressed and yet again alone. At that time, I had you guys. I had this blog and that was really it. I didn’t really connect with my camp friends that first year, and other than my family, I was so devastated. Thats the only word I can think of to describe how defeated I felt. I thought colitis was still winning and I just didn’t know what else I could really do at that time but crawl into a hole and stay there. And  I did. For a long time. But I knew that if I wanted a jpouch someday, I’d have to work for it. Literally, I had 6 months and 40 lbs to lose before my surgeon would even try again. So when I could, I got a personal trainer and started working out. I WOULD have a jpouch. I WOULD get through it. And I did. I worked my ass off literally. I worked out like it was my job and I learned how to work out with an ostomy, and I learned how to talk about having an ostomy and about my life more in person. With real people not just to the internet. I explained my life and my ostomy to my trainer at the time and while I could tell he didn’t really get it, he still encouraged me. He wouldn’t let me say “If I lose the weight”, he would say “When you lose the weight”. He honestly taught me an amazing lesson in positivity. He taught me how to picture what I wanted and that the mental game is more than half the battle. It IS the battle. He is still my trainer today, and has turned into a really good friend. A friend that puts me in headlocks on a weekly basis, isn’t afraid to tell me when I look like shit, and make me work really hard. But a friend that taught me how to believe in myself, and that if I pushed, my body could do it. I could do it. Again, I didn’t know I was learning these things at that time, but I was, and these are skills I still have now.

I wore my “Lucky Lass” shirt to my pre op appointments. I knew I needed some extra luck.

Surgery #3 came around in March 2011. I did it. I lost the weight I needed to lose. I drove my ass back to Cleveland and I walked into Dr. Remzi’s office and I was ready. Let’s do this. I was never more prepared for a surgery in my life. I was mentally strong, and physically stronger than I had been in over 2 years.
The surgery came and went and was flawless. I left Cleveland in a timely fashion and felt like a damned rockstar. Until a day later when my stoma separated. And I have never been more horrified in my life. I had also been fighting that nasty ulcer, and that combined with the separation made me absolutely terrified. Again…I felt defeated. Would ANYTHING work properly? Would I ALWAYS have problems? So back to cleveland I went. Defeated. Frustrated. Angry. Depressed. But this is why I learned that sometimes, you don’t have a choice. You have to keep going, and trying because there is not another option. And as much as it sucks, you pack up everything you JUST unpacked, you call your mom crying, and you ask her to come over help. You learn to ask for help. You let you mom make phone calls for you, and then you have your Dad come pick you both up and drive you 4 hours right back to Cleveland. I think I cried the whole way there because I just couldn’t think of anything else to do. But right there, in that time, I learned how amazing my family was. I mean I knew it before then, but it was moments like this that I knew I’d never be able to do it all without them. I also learned that no matter how old I was, there would still be times that I wanted and needed my parents to come to my rescue and that it was ok to ask for their help and to depend on them because sometimes they wanted to be needed too.

My third stoma. My prednisone scarred stomach. Horrible JP drain.

So after that got taken care of, I went home mentally exhausted, but at the same time I knew that if I just made it until June, I’d have my takedown. I just had to make it 3 more months. And then I had an MS attack that took my vision and all of my optimism. I was told I’d have to push back my surgery…again. And this my friends, is when I lost it. Right there, that was my rock bottom. Physically and mentally overloaded and after years of just pushing through, I caved. Everyone has breaking point and that was mine. I retracted into myself, I stopped answering the phone, going places, eating. Everything. I learned why people choose to die over choosing to keep going. I learned that I had that choice too and it took me a while to choose to keep going. I had tons of support from everyone here, but at that time in my life, I had to choose to live on my own.

And I did.

During all of this I also found a new surgeon because I was having problems with my surgical team at Cleveland. And then…it was June. My takedown was scheduled for June 6th and when June 1st hit I had this mini identity crisis. I was so excited to take the next step in my IBD journey and try out my jpouch that I had worked SO hard to get. But at the same time it was like diving head first into the unknown. It was like my first surgery all over again, I was scared, and nervous, and doubtful that it would even work. I took tons of pictures of me with my ostomy because I wanted to remember myself in that place. Happy. Healthy. Confident. Proud. I wanted to remind myself that if I could feel this way with my ostomy, that I could take on the world with my jpouch.

I never posted some of these pictures, because its one thing to be confident, its another to post half naked pictures of yourself on the internet. But you know what internet, I look back at these and I see progress. I see a body that I worked hard to get, even though it wasn’t perfect. I see scars that are healing nicely. I see that I was starting to build myself back up.

My last picture with my ostomy.
Surgery # 4 was different.

I was so prepared for it. I was so ready and I thought it would be easy peasy but it wasn’t. It was a difficult recovery. But when I woke up in my bed the first thing I did was reach down to feel for my bag. And it wasn’t there. I didn’t feel relief. I wasn’t super happy. I actually mourned the loss of my ostomy a little. For the next few weeks I kept reaching down to touch my bag, or adjust the stool. I had created all these habits from having the ostomy, and I never even realized it. It was almost like a nervous tick, I just did things without even thinking about it, and now…I didn’t have to. It was weird. The other day I was actually thinking about how fast we create habits…and then how quickly we forget those habits. I probably stopped checking my “ostomy” just a few weeks after surgery. At the time, I felt like I’d always be checking for it. So quickly we forget.

Former ostomy site.
I don’t want to ever forget. I remember my ostomy like I remember an old friend. I learned a lot from it even though it caused me stress and frustration. I am thankful I had it, because it saved my life. Having my ostomy introduced me to so many new people, and put me in many new situations that I would have never been in. IBD changed me, but I think having an ostomy molded me. It helped turn me into this person who I think is pretty great. Like I said, my ostomy taught me humility, but it also taught me how to be proud of myself and my accomplishments. I learned about my own personal drive in life, and my passions. My ostomy took me to new places, and I’m not just talking about an OR table, or comedic situations that would make that scene from Bridesmaids look like a disney movie. I’m talking about the places I’ve gone, the people I’ve met, and the places that I went in my own evolution.

Today is World Ostomy Day, and on this day every year, I’ll remember how I got to where I am. I actually kind of wish I had an Ask Me About My Ostomy shirt because I am more than happy to tell anyone about my front butt that saved my life.

Invisible Illness Week Is Over. FINALLY.

So now that Invisible Illness week is over I feel like I can sigh a sigh of relief. I have to be honest, I hate Invisible Illness week.

But Jackie, you have multiple invisible illnesses, shouldn’t you be a cheerleader for people like you during this week?

Yes. I should. I am always a cheerleader, but frankly during Invisible Illness Week, the world gets inundated with people who just whine and complain about whats its like to be us. It is blog post after blog post about why people don’t understand and how hard it is to be us.

Oh Barf.

Almost NO ONE takes this week to talk about invisible illnesses and educating other people. You rarely see the blog post talking about how a life that changed for the better because of their illness. I agree that this week is a good time to explain to the rest of the world what is it like to live with an illness, but part of our job as patients, is to market that information. This week should turn us all into marketing professionals. We should be marketing our disease to people. Marketing is about creating interest and its an opportunity to educate. If you just sit around and whine about how bad your life is, no one wants to buy your product. Instead you have to be honest, open, upfront, but without all the “woe is me” bullshit.

Frankly I don’t think there should be a week about invisible illnesses at all. I think we should all be out there every day advocating for ourselves and our illnesses. Posting a graphic about the week and how hard it is to be you, once a year, doesn’t raise awareness. It makes people hide you in their news feed.

And don’t even get me started on the “spoon theory”. If there was one piece of illness propaganda out there, it’s that. It has been the catalyst for all people with chronic illnesses to complain about their lives. So take your spoons and shove them up your ass. Stop whining.

Everyone is allowed a pity party. I have mine. I’ve had plenty of them right here on this blog. But every post I make is not about how hard is it to be me. It’s not about how people just don’t get me. It’s not me making excuses about how my illnesses hold me back. A pity party is what you get to do after you have a bad day or experience. It is not the state you should be living your life in. You have a chronic illness. Have a good cry. Ok…now move the fuck on and do something about it. Take your meds, see your doctors, advocate the hell out of it, and smile because you’re doing the best you can everyday.

Show people that these diseases cannot and will not break us. Its marketing. Its how you present your product. I would rather be the strong product with loads of facts and information that people pick up because it looks good, and get pulled in by reading the label. Those of you who just bitch about what your life is like can stay on the bottom rack of the dented can section. Let me know how that goes for you.

Still talking about running…

Last night I did not have a good run. Rewind.

Last night I stopped over at my Grandparents house for a quick visit and I was like “Hey Grandpa, did you hear I ran a 1oK?” My Grandpa is in crazy good shape for being such an old dude. Hes in his 80’s and walks everywhere, eats right, and shovels my snow in the winter. He could give any 25 yr old a run for their money, I swear.

This is the same Grandpa who when I was younger, would comment on my weight and what I was eating… So when I prompted him with the 10K I totally thought he would be all “Yea I did. You’re so amazing, favorite granddaughter of mine”. Instead, he said “I was surprised your body could do it”.

Hmm.

So without pushing the topic anymore, I wondered, did he say that as a compliment, or an underhanded comment. I’m not sure. I decided to go with compliment.

Anyway, so I went for a run last night because I had the itch to go. That “I want to/need to run” feeling is new for me, and its kinda cool. It feels like its going to set you up for awesomeness. I was wrong.

Last night at 8:30 it was 88 degrees. I wanted to try to do about 4.5K which is what I did in similar conditions the other day. Well I screwed myself because I started out too fast. I was trying to measure/time something and I screwed myself up. So then I was frustrated and stopped to stretch a bit. Then I got cornered in a conversation about epilepsy and diet by some strange guy on the sidewalk. Well it was more of him talking at me, than a conversation.

So anyway I was frustration and kept going. I couldn’t find my pace. It was hot.

After what felt like a good distance, I turned on the home stretch to get home…and finally found my pace. Damn it. Instead of pushing it, I ran until I got home and just stopped. Once I found that pace, it felt good, but I knew if I lost it again I would have just gotten frustrated. To make it worse, when I got home, I realized I had only really run just over 2 miles. So I was disappointed.

Then I thought about what my Grandpa said. My body has been to hell and back. It was hot as hell outside. And I still ran 2 miles. Not to mention that MS is SERIOUSLY affected by the heat. There are organizations that give out cooling vests to MS patients because our brains just short out in the heat basically. I do this sometimes. If I’m out in the sun all day I just get to the point where I can really think straight or make decisions about anything. I also get crazy tired. When I first started working out, my body temperature was a serious problem, because it would get so high that I couldn’t really perform tasks correctly. So yea heat and MS = a problem.

It is almost as if the universe is working against me and my fitness goals. But you know what? Eff the universe. I’m gonna run a 1/2 marathon in December. At least that’s what I’m going to plan for. Diseased body or not, I’m going to try to do that. And you know what? I think I’m going to succeed.

So you know what Grandpa? I’m surprised my body can do this too. But it can. And so I will.

And on that note, Kayla here is my current playlist. I didn’t put the songs in this specific order for any reason, its just how they got added.

Bad Romance – Lady Gaga
Ocean Avenue – Yellow Card
Harder To breathe – Maroon 5
This Love – Maroon 5
Life of a Sales man – Yellow Card
ET – Kay Perry/Kanye
Comeback Kid – Sleigh Bells
Fighter – Christina Aguilera
Independent – Lil Boosie
Bulls on Parade – Rage Against the Machine
Go your own way – Fleetwood Mac
Way Away – Yellow Card
Breathing – Yellow Card
Dance With Me – 112
TwentyThree- Yellow Card
Pressing on- Reliant K
Fixed At Zero – Versamerge
Miles Apart – Yellow Card
Who I am hates who I’ve been – Reliant K
Let me see your hips swing – Savage

What I think about Jack Osbourne's MS diagnosis

I’ve recently had a lot of people ask me what I think about Jack Osbourne getting diagnosed with MS. So here’s where I show you guys what a jerk I really am.

I’m glad that he got MS. Ok wait. Rewind. I’m not happy Jack Osbourne got MS. I honestly don’t wish MS or IBD or any other disease one anyone. Except Hitler. I wish an ass disease on him, for sure.

Anyway, what I’m saying is that I wish more celebrities had diseases like MS or IBD. I am inclined to think that statistically more of them have these things and just don’t disclose it to the public, which is their right, but frankly its not helping anyone else out.

I wish that more high profile people were public about diseases because thats where REAL awareness comes from. Those of us in these communities raise awareness all over on smaller scales. Runs/walks/local newspapers/ect. But when a high profile celebrity gets some kind of disease it makes global news. Jack’s MS was trending on twitter. And its not just the regular news, its entertainment news. This is the kind of thing that really does reach the masses. Jack’s diagnosis was everywhere from The Today Show to OK magazine and every blogger in between. Every time one of our causes can get press like that, it is a good thing.

And heres the real kicker. When famous people have diseases, it becomes important to them. What happens with things that are important to famous people? They raise money for it. Think Michael J. Fox. Seriously, how many people knew about Parkinson’s before him? More importantly, how much money has Marty McFly raised for Parkinsons? A TON. Celebrities have fundraising magical powers that the rest of us can’t even fathom.

So its wrong to wish diseases on people. But is it so wrong to wish that a few less of us “regular” people got them and a few more “people in high places” got them? Unfortunatly in a time where our society is fascinated by celebrities, they are the ones who are capable of real change. Once something gets on the celebrity radar, awesome things can happen. Look at Casey what’s his face from American Idol. I don’t watch that show, but he got famous there, and now look at the awesome things hes trying to do for Crohn’s? Look how many more people are learning about IBD because of him? Hell, I know who he is and he has IBD. Awareness is working. Its all about how far your reach goes and as “regular” people our reach only goes so far.

I will say that I think its brave and a little inspiring when celebrities are open about their medical conditions. I wish that those who were in hiding would realize how many people they could help by just telling their own stories.

 

As a side note: I saw some comment about Jack where someone said that he probably got MS from all of his drug use. I wanted to reach through my computer and rip that persons face off bath salt style. THIS is exactly the kind of ignorance we’re all working to prevent. THIS is why when famous people get a disease, it is an opportunity to teach the masses. I wish I could call Jack up on the phone and tell him everything I learned through my MS diagnosis. I think that my MS diagnosis was a lot scarier than IBD because that disease is 100% different person to person. Symptoms aren’t even the same, disease progression is unpredictable, and the possibility of complete disability is there and its a crap shoot if you”ll get hit with it or not. But what no one told me when I was first diagnosed is that there are people like me out there. Knock on wood. People who have little to no problems with MS. People whos life gets disrupted but not sent off course and who are still happy and mostly healthy even almost 6 years post diagnosis. Again…thats the kind of thing I want the world to know. Maybe Jack’s MS will be like mine, and now he can be a voice of hope for others who are newly diagnosed.

 

Update: Casey what’s his face has colitis, not Crohn’s. My bad, I should have known that because I have UC to. Keep workin on that awareness buddy. Not quite there yet!

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