Turning Around

While it's true that bad things can't happen forever, I was seriously beginning to doubt that this summer. I haven't written outright about my lousy summer because it was too depressing and I didn't think it would be interesting to read about.

So here we are, the end of August. It's honestly been about two months of sad thing after bad thing after expensive thing (repeat). But finally, finally, the last week or so has really brightened up for us. So here is some good news I have to share!

Doc had to wear a cone and a Thunder Shirt after his first surgery to keep him from scratching his wound.

After two surgeries, our dog Doc seems to be cancer free! The doctor removed a lump initially which turned out to be slightly (though not aggressively) cancerous. We did a second surgery to make sure all of the margins were clean from the first surgery and they were! So we are very happy about that, and Doc is extremely happy to be out of his cone.

On the very same day we got the "all clear" on Doc, I went straight to Cause for Paws and filled out an application for the kitten I've had my eye on for three weeks. I picked her up the following day, after convincing Todd that we should give it a try. "She's a very special kitten!" I said. And little did we both know how true that would end up being. 

Pippa is the sweetest little thing, very gentle with her claws; she has gotten used to the dogs and now swats at their tails like Maya; she and Maya have become best play buddies, which I was hoping would give some of Maya's playful energy an outlet; and her markings are so unique and fun to look at! I told her to not be in any hurry to grow, and I kind of hope she will stay small forever.

This one likes to cuddle!!

I had very good labs, x-ray and PFTs last week, followed by a good 3-month appointment with Dr Reynolds. There isn't much going on right now, which is awesome, except for some coughing at night which is actually a pretty unpleasant problem. It wakes me up, so does Pippa, wanting to play, and Gus, wanting to go outside... it hasn't been very restful lately. 

We finally got some tangible news about the Volkswagen buyback program for my car! Now we can start making decisions based on the facts instead of abstract ideas. I love my car. I really don't want to give it up. But whether I sell it back or keep it, I will still be awarded a few thousand dollars of settlement money. So we will see.

I saw a couple of old friends last week who I hadn't seen in a while. It was so good to catch up! And it's always neat to see people's reactions to me when they haven't seen or talked to me in a while. It's easy for me to forget how far I've come without people reminding me now and then. Along those same lines, my brother is back in the country from his family's five+ month excursion in Europe. It's strange but it feels so much better knowing he is back on the same continent as I am.

Our soap making is going well! Our last batch turned out especially cool looking. We were trying a new honey base for the first time and had a lot of fun trying different variations of things with it. 

I think this bar was my favorite. It's honey base with apricot seeds, lemongrass scented.

We have begun the process to get a home equity loan to make much-needed updates on our house. Unfortunately, there aren't a lot of "fun" things on the list, but I know that we will both enjoy our screened-in porch more once the roof is raised and we have a fan and lights (and maybe speakers?) out there. We are going to pay off our HVAC loan and replace the main house roof. We have some trees that need to be taken down in the back yard, branches trimmed. We are getting a new mattress! Ours is starting to sag rather badly. We are also going to upgrade the electrical outlets in the house and do some other electrical upgrades. Lastly, we both have "wish lists" of a couple bigger things we have put off buying the last couple of years. There is much more to do if money permits; we'll just have to see how far we get.

I have not eaten any meat (except fish, which I never intend to give up) in the last few weeks. I do not want to call myself a vegetarian. That name just doesn't seem to fit me. For now, I am going with the term "conscientious eater," and it does not mean that I will never have another bite of meat. It just depends on the situation and me making the best decisions I can at the time. I do have to say, I have had fun trying new vegetarian recipes. I've always been so afraid to become meat-free(ish) because I am not a very good cook and I feel like you have to be more creative without meat. But so far it really is working out. And while I'm not sure how thrilled Todd is about it (I'm pretty sure he's eating meat every single time he's at a restaurant) at least he hasn't vocalized any disappointment.

Lastly, my volunteering has gone gangbusters lately! It is a slow time right now for my Transplant Games duties, so I have committed myself fully to being in charge of the Lung Transplant Foundation's Casino Night auction in early November as well as helping with other things.** Since I am in charge, I am making the auction very NC-handmade goods focused. I think it's going to be really unique and lots of fun! I am also working on how to make the process more efficient. So if anyone reading this has done this before and has wisdom to share, I am happy to hear it.

I have a couple of trips coming up - mountains for Labor Day and Michigan the week after that - which should be fun. I am also starting a writing class the week after Labor Day which I'm really excited about. The class is called "Real Writing" and should be a good guide for me to improve how I write about myself and my own experiences (mostly pertaining to my health). I am signed up with a friend, another cystic, who I met at Duke but who has been healthy enough to stay off the transplant list. He is a great guy, very introspective with an interesting life; he has also been through a tremendous amount with his health that he wants to write about. I'm looking forward to the writing but also to spending this time with him.

**If you are local and are interested in tickets, please go here: http://lungtransplantfoundation.org/casino-night-tickets/.
If you are unable to attend but generously would like to make a donation anyway, please go here: http://lungtransplantfoundation.org/donate/ and donate to the National Chapter.

My First Normal Person Cold!

Our new cat Maya (aka "Kitten")

I have had lots of ideas - new year thoughts, writing my donor letter, resurgence of soap making, losing a beloved cat and the shenanigans of our newest feline family member - but I have been slack about writing. I'm sorry! Although I am tempted to do one of the "update" blogs that I so despise, I am going to resist and instead talk about my first real person cold last week! (I will mix in some catch-up pictures instead.)

Monday morning I woke up feeling awful: sore throat, productive cough, swollen glands, and a bad headache. Fortunately, I had no fever and my mucus was nothing but clear. I can't tell you how strange it is to have a cold with normal people's mucus! Every time I coughed I swore it was going to be a big gross blob, but it wasn't! So weird.

We went to Michigan for Christmas. Here, Simon reluctantly poses for a photo.

Todd was concerned and thought I should call my coordinator. Duke being Duke, they wanted me to get a slew of tests to rule out strep, flu, and to check my white blood cells and other blood work. I dragged my ass out of bed and Todd took me to Duke Hospital in Raleigh. I was coughing uncontrollably - that devilish tickling in your throat - in the lab waiting room. It reminded me of the bad old days of suppressing coughs in public.

After the Duke excursion, I went home and went back to bed. I can't remember what else I did, but it probably involved binge watching Nurse Jackie.

I have been cooking at home more and eating better because of a meal ingredient delivery service I started using. This Italian meatloaf turned out really well!

One thing that kind of sucks about transplant - besides being dragged out of bed for proactive tests when all you want to do is lay around in your pajamas - is that you aren't allowed to use any of the traditional "cold and flu" remedies. You are stuck with Tylenol and Guaifenesen. It's hard to find, but Guaifenesen in liquid form does exist - it's like a stripped down version of Robitussen. After that, you are relying on what feel like old-fashioned home remedies like cough drops, hot showers, hot tea (no honey!), getting lots of sleep, and good old sweet time. It's very primitive for someone who has undergone such a complicated life-saving surgery.

The good news about my labs was that I was negative for flu and strep. The bad news was that my kidney functions were not good - my creatinine had spiked way up to 3.0! Because of this, several medication changes were made. They told me that drinking 64 oz water/day was mandatory, and more fluids beside that, if possible. I've developed a system for that and I've really tried to lay off dehydrating beverages.

Soap making is picking up again! 808 Soap has a new client opening a salon and she wants to sell our bars. Here are some sample size hearts we made her for Valentine's Day.

As a side note, all of this was happening during my COBRA transition period - a time during which I am technically covered (but only retroactively) but sort of not covered. Fortunately with many phone calls I was able to straighten everything out and the insurance ship is now sailing smoothly.

A short regression: Somewhere in the middle of all of the calls and emails with my coordinator, tracking all of the medical changes that were going on, and getting procedures done, something occurred to me: I am damn good at being a patient. I know, who cares, right? And - here's the weird thing - I actually kind of miss it sometimes. I know that sounds crazy, but it's what I've known all my life. Doctors, clinics, labs, medication changes...it became so much a part of my life before transplant that in some ways it's actually difficult to leave behind.

Don't get me wrong, there is a LOT that I don't miss - the hours of treatments, the weeks of IVs, the days I felt like crap. Good riddance to all of that! But there is a human connection and special kind of attention one gets with doctors, nurses, lab technicians, even fellow patients, that I miss. In ways I feel totally disconnected from my old CF community - because once you get new lungs, you have "transplant," not CF. This could be another whole blog but I will stop there.

Anyway, fortunately this cold turned out not to be anything serious. I'm very grateful for that. (I also live with that whole "when is the next shoe going to drop" feeling in the back of my head. Could this be the beginning of my downturn??) And in a way, I'm glad to have it behind me because I always felt it looming in the background, and I had some idea of it being really really terrible to go through a viral flare-up with a suppressed immune system. But it wasn't! It was just as miserable as a normal person gets. Hooray for normal!!

Belize and Beyond

It's a cold, rainy day - perfect for catching up on my blog.

Sunset over the swimming pool

We made it to Belize! Hard to believe that was already almost a month ago. Belize is beautiful and we had a good time. Unfortunately, the weather was very rainy (yeah, I know it's a rain forest!) and I got a little stir crazy. But it was probably what I needed to have lots of time to lay around sleeping and reading.

We had absolutely amazing food - fresh fish and seafood every night, lobster!! - drank lots of Belikin and rum drinks. Todd went fishing. We had one amazing day of snorkeling where we saw sea turtles, tons of fish, beautiful coral and swam with the (harmless) nurse sharks. The resort was very nice, the staff were all super friendly and the rest of the company there was enjoyable.

Backing up just a little bit...

Had a pulmonary check-up/re-check from IVs three days before we left for Belize. It was an incredibly intense appointment. After three weeks of going into the hospital for Colistin and all the crazy side effects, switching meds around and exercising my numbers were still crap: 34% FEV1 at 34 years old is NOT where I want to be. I think that was even a little lower than before I went on IVs. Ugh.

When Dr. Coakley walked into the room, I was crying, so disheartened by the numbers and feeling so frustrated and hopeless. Todd was with me. The three of us talked for a long time. In true Coakley fashion, we went through what we had done and concluded we had taken the best steps. Did we get the results we wanted? Absolutely not. But had we done the right things? Absolutely.

And as much as transplant and declining health feel like they are creeping up on me, he assured us that we aren't there yet. And, like always with this disease, you just have to keep trying things to find something that will work. Things are just getting trickier, but that is no reason to dispair.

We both walked out feeling extremely positive and, if it was even possible, even more impressed with Doctor Coakley than ever before. I love this man!!!

The Best Thanksgiving Ever

Chef Jay carves his masterpiece

I have usually gone to Cleveland for Thanksgiving in recent years. And I usually drive. The only way I could make it happen this year (with my aging car and not wanting to take extra time off work) was to fly up on Wednesday and come back on Saturday. The visit was short but sweet.

Child labor: the girls haul my backpack up two flights of stairs to my room in the attic

I seriously had one of the best Thanksgivings ever. My step-sister and three nieces (age 9 and 7-year-old twins) came to pick me up from the airport. "Hi Aunt Laura!" They were so cute and excited to see me. By the end of the day they were crawling all over me and sitting in my lap, and of course trying to recruit me to play the game of the hour. So sweet. They crack me up.

Then there was SIMON, my brother's 2-year old. My brother, his wife and Simon arrived Wednesday as well. We all met up at my dad's house before dispersing for the evening. Simon is amazing. It is no surprise that both his parents are professors. He is so smart and talks and talks what seems way above what normal kids his age would. He has the biggest most beautiful blue eyes. And he is so careful and gentle with things, and very polite and well behaved. Love love love!

So what made this the most amazing Thanksgiving ever? For one my dad was doing pretty well health wise, better than when we saw him this summer. That was awesome. Secondly, I got some one-on-one time with almost everyone, and lots of niece and nephew time. Thirdly, the food (compliments of my step-brother, the amazing cook Jason) was absolutely phenomenal. To top it all off, we had the prettiest snow, falling in big flakes, covering things just enough to be perfectly picturesque. Enough to make this ex-northerner a little sentimental.

Amazing Annual December Soap Event

We again participated in the Raleigh LGBT Center's First Friday event last night. It had been a while since we did a soap display so we were kind of scrambling around a lot this past week. Our soap looked so so good. I think I was most proud of this display than any other one we've done. There were no bars that looked amateur. We rocked it!

Wintergreen tree, lemongrass scrub, cinnamon clove gingerbread man, lavender star

That All Sounds Great, But How Am I Really Doing?

So glad you asked! As you have read, I have a lot of awesome things going on in my life and am surrounded by amazing friends, family, pets, doctors...what more could I want?

Well, I want to be able to sweep my house, walk up stairs and carry groceries to the car without getting short of breath. Getting out of breath sucks, it really does. It has made exercise so much more difficult for me; I've had a very hard time motivating myself to do it. I know I need it more than ever, if I am going to recover my numbers that is how it will happen. But I can't seem to get over the hump.

I have been working on acceptance. I need to accept where my lungs are at, adjust my life to work with how they are, and realize that I am going to have to let some things go. It sucks but I am not the only one to ever have to go through this. But while I am trying to accept things, my sadness and frustration is still very much alive below the surface...I've been having a very hard time with my new position in life.

I have more outwardly becoming a "sick person." It is harder for me to control my coughing during the day, at places like work, I'm congested, my voice sounds like I'm sick but I'm not, my shortness of breath (walk too quickly and also talk? not anymore). I know I've talked before about handling health decline with grace, but damn this shit is hard.

A Change for First Friday

Our latest batch all ready for First Friday September

808 Soap has had First Friday, a downtown event during which art galleries stay open late and entice people in to browse with free wine and beer, on the third floor of a really old and quirky building downtown (Father & Son) for a year-and-a-half or so. We were all set for First Friday September with 25 new bars of soap and then... we found out that our normal place is still trying to resolve some issues before they can have big events again.

After a brief moment of panic, we decided to ask our friend who owns a bar downtown and, while 'selling bars in a bar' has a cute ring to it, we really weren't expecting much. It would be totally different than our normal crowd, would not get busy until later in the night after we were done, and who even carries cash anymore?

But it actually turned out really great! (Sadly, I got not a single picture.) Though the bar is the opposite of Father & Son in almost every way (3rd floor - basement; hot - cool; light - dark; cramped room - lots of space; limited alcohol selection - infinite choices of alcohol) somehow it worked. We sold 9 of our 25 bars in just over 2 hours of time, which is a good night for us.

So what is the future of 808 soap's First Friday? With the holiday season soon approaching, we definitely need to figure it out. Father & Son will likely remain a good place to sell during the rest of the month, but First Fridays there may never be the same.

Elaine and I at our display at Father & Son

Figuring it out

Allergy testing

My goal for last weekend was to chill, chill, chill. And chill I did. It felt strange, but was very nice. :) Finished a book, napped, went to a movie, caught up on my trashy TV. I need to do that more often.

This week has, as usual, been go-go-go. The highlight of the week, appointment wise, was my allergy re-testing on Wednesday. We tested all 108 (a very auspicious number, no?) environmental and food allergens, and the only things I was allergic to was ragweed and...cats. Sadly. This is actually amazing, though, because when I was first tested in 2007 I was allergic to - seriously - the large majority of environmental allergens that we tested. This means that the allergy shots have been doing their job. Yay! We are going to beef up my serum for cats and ragweed and hope that will help me be able to cut back on my Prednisone dosage, which is now 10 mg per day.

My leg has continued to be bothersome and painful at times. My PT has been going along well but also feels like a bit of a crapshoot. I mean, on Saturday, after I've been going there for a month already, the therapist says to me, "I'm still trying to figure out just what's going on here." I know I have only seen her three times, but really?!? I go through 30 mins of 20-questions -"does this hurt?" "what is your pain level for this?" "if you do this, is it better or worse?" - I walk out feeling a bit better, but wondering why in the world it takes that much maneuvering just to feel a little bit better. It just doesn't seem fair. Actually, I am really frustrated and I hate it right now.

Onto merrier things: this weekend, our friend started refinishing our deck. So far, awesome! Can't wait to see the final result. Last night, Todd took me to a concert of a band he saw a bunch of times in the 90s but who hasn't played for a long time and I really enjoyed it. Today, Elaine and I made soap, working around her upstairs which has been inundated with stuff from her basement which flooded two weeks ago. It was good to make soap after so long of a break. Had some really cool ideas today. I'm lately feeling like such the 'ideas' person lately, and it is a role which I really like.

Ta-ta!

Not great, not terrible - somewhere in between

It is hard to describe how the week has been without sounding complain-ey, which is about my least favorite thing in the world. I will try to be brief on that stuff. But let's start with the good news!

808 Soap had a really successful First Friday. Several of our friends came out, and we had a really good time hanging out with everyone at Father & Son. We are doing a fundraiser for the Cystic Dreams Fund (founded in memory of my good friend Paul Mooney) giving 20% of our sales this month.

We also had a Kentucky Derby/Poker Tournament party yesterday that was a lot of fun. My horse was ahead until the very end! Such a tease. Really, we know next to nothing about horse racing but it is fun to get into it one day a year. Todd ended up winning poker! And I came in 5th place out of 20 people.

Also, had some really nice bike rides this week, continuing to enjoy the spring weather. On Monday, we rode to J. Betski's, a Polish and German restaurant not far from our house, and enjoyed an array of kielbasa, bratworst, pierogies and a strudel for dessert. It was good. :)

In less exciting news, my leg has continued to give me problems. I have been limping around now for over two weeks. I don't even notice it anymore, which is kind of sad. I was too busy to make it the chiropractor this week, but I was beginning to think I wasn't going to solve the problem there, anyway. I think this is an issue with my sciatic nerve, and I have an appointment with my primary care doctor tomorrow to start getting to the bottom of this. Biking or doing my elliptical machine don't seem to bother it, but walking a lot will irritate it. Fortunately it's not painful most of the time, for which I am thankful.

Also, the cold that I've been messing around with recently dropped into my chest sort of suddenly and I ended up taking Tuesday off work just to sleep all day. I did feel better after that. By about Friday I began to realize things might actually be settling into my sinuses, and I called my ENT to get on the antibiotic rinse we talked about. He was in surgery all day, and then when something did get called in, there was a problem at the pharmacy, and then my insurance didn't want to pay for it (that is very unusual.) So it will be Tuesday at the soonest before I can get on that.

I have mentioned here before about my father's respiratory problems and his pursuit of a lung transplant. He is now almost through with the evaluation process, and then his case goes to a committee to decide if he is eligible or not. Things are looking pretty good at this point. It is exciting, and also scary.

What I haven't mentioned is that my mom is also having some health issues right now. She has been off work on disability for the past couple of months not able to walk around easily. After this and that it was determined that she will need a hip replacement surgery. I hate that she has to make a decision like this, but I also believe that it can help her not only to be in less pain but also to get around more easily - she needs especially to be able to go see her new grandson when he is born in September (yay!). I'm also hoping that it will help get her into a better routine with being more active and being able to enjoy (hopefully soon!) her retirement.

Todd's dad is also having to deal with some progression in his cancer. But I think they've figured out another type of hormone treatment that might help him - after that they would have to try chemo. In the meantime, he and Todd are planning a trip out to Montana in June for two weeks. We hope the new hormone treatment will help, and that he can enjoy another good stretch of health.

So yes, I have a lot going on both with myself and my parents right now. As for me, I'm not really sure where I'm at. I am certainly not out of the clear as far as needing IVs. I have an eye to next weekend's camping trip, and I really want to be able to go - of course, only if I am feeling well. Maybe treating my sinuses will calm down my lungs. My lungs aren't terrible so I have some wiggle room.

My plan for the week is to get on the antibiotic sinus rinse and continue to push myself to exercise as long as I have the energy. And just take it day by day.

Unexpected weekend at home

Diosa was being especially cute the other day and several photographs were taken

Since I am stuck this afternoon sitting on a heating pad, I might as well write my weekly blog entry. I am sitting on a heating pad in an attempt to get my glutial and hamstring muscles to ease up a bit. I have had issues with my right hamstring for about a year (not continuously.) But I woke up today and it is much worse than I ever remember it being. I am hoping that my muscle relaxer kicks in soon. More on this in a minute.

When I last wrote, I was optimistic that Sunday night would be my last lovenox shot. My coumadin clinic appointment on Monday did indeed bring good news: while not yet in therapeutic range, my INR was going up, and since I was out of the six week post-clot danger zone, my doctor said I could go ahead and stop the shots. I told him before we decided that, I needed to tell him something: I had been having wrist pains exactly like when my clot was diagnosed on Thursday and Friday. It wasn't as bad or for as long, but it was definitely consistent and had the same pattern as six weeks earlier.

The doctor left it up to me and we decided on the cautious route of doing shots for another week until my coumadin level is therapeutic. Incidentally, he wasn't too alarmed about the pain. (Here I was thinking I would be dropping a big bomb telling him...that it could mean my clot had reformed or in some way worsened.) He said it's common to have residual pain or swelling even after treatment. I still didn't think it was a great sign, and I asked if this meant there would not be any way I would be on this treatment for three months. He said three months was still completely feasible and that we'd just have to see.

Anyway, the good news is that the shots have not been as painful or left as bad of bruises for whatever reason this week. So yay for that. And I have not had any more bleeding incidents, so hopefully that one was just a fluke.

I lied: there is more good news. I have been feeling really good this past week, lung wise and mentally, too. I went for three or four bike rides and went to yoga twice. Also walked the dogs a couple of times. I have been tapering my prednisone down from the 20 mg upped dosing that I was on for a month or so to try to get my pfts up. It has made me a little short of breath, and, the frustrating thing is, my pfts never really went up. But I feel great! So I'm thinking I will have to taper slowly - my lungs may just be suffering some seasonal strain from allergens even though I'm not having typical allergy symptoms - and possibly stay at an increased dose for a while longer.

So yes, I am very happy having had a normal and active week. Plus, I have been getting a lot of compliments lately about how I look and my new haircut, which is nice. :)

Now I am feeling a little restless... Todd and I were supposed to go to the beach this weekend but he came down with a nasty cold and was not feeling up to it. Then I woke up today with this super-tight muscle issue. I'm wondering if it is because of all the activity I've been doing? I'm not sure if there is evidence for that except for the timing of an active week and, now, a very tight muscle. Also, I thought the initial flare-up a few weeks ago was because of having gotten out of my exercise and stretching routine for so long. Who knows.

Supporting local craft makers at the Handmade Market!

But I decided it wasn't going to ruin my day, so my soap partner Elaine and our silent partner Maura and I went to check out the Handmade Market downtown this afternoon. It was really great to see all the things there - jewelry, t-shirts, stuffed animals, metal work, glassware, pottery, body products...of course we were especially interested in the soap! We were also getting ideas for how to set up our own stuff if we do this event, or an event like this, in the future.

Over the river and through the woods

The really exciting news is that I am done done done doing stuff/setting up/preparing/etc. for the two First Friday events my soap partner and I are doing on the 3rd. I am really happy with our display at Designbox, which has three containers halfway filled up with the soap on top of that - orange lentils with our scrub soaps, wild rice with the goats milk, and oatmeal for clear glycerin. Here is a picture:



Thanksgiving:

I felt like I overcame a million obstacles and back-and-forths about my trip to Cleveland to see my dad and step mom and her family Thanksgiving - a trip I had planned for so many months that the thought of giving it up was devastating. I ended driving my mom's brand new Prius up there! So nice of her to let me do that. And I had a wonderful, wonderful time. We all jive really well. Even after 5 days there, I could have stayed longer. Here is a picture of my dad and I right before I left:



Also while I was there, I ended up coming down with Todd's cold, which I had tried so hard to escape. Fortunately, with the herbs, Vitamin C, zinc, green tea and lots of water, my symptoms were pretty mild. But it definitely lingered, and has continued to affect both my lungs and sinuses.

To finish telling you what's up now, I have to fill you in on what happened after I had to stop Tobra b/c of the ear ringing a few weeks ago. The first few days after I started having worsening lung symptoms. I got pretty upset because, well, one, it's easy to be hyper-emotional when you're in the middle of an infection; two, I was worried about being able to have Tobra in the future; and three, probably the biggest thing, I didn't want to lose ground on the two weeks I'd already had on IVs!

At my two-week follow up appointment, when I thought I might be declining again, I was surprised to have my highest PFTs since 2007. But with the uncertainty of my lungs after the abbreviated course of Tobra, we decided to keep the picc line in and follow up after Thanksgiving. I did start to feel better after a couple of days - my energy was increased and my lungs started feeling good. And then...Todd got a cold. And a week later, so did I. And the cold lingered in my head and stirred up my lungs, which brings us to now.

I usually write a lot on here when I'm sick, partly to keep people informed and partly for catharsis. But I haven't really felt like it. A lot of the reason is that I have been frustrated with not knowing what is coming next...I need to be a more patient patient.I've felt like I'm planning my immediate future around the outcome of my next doctor's appointment - and I've been so long up and down (several months, really) that my internal compass is all out-of-whack: I don't know which of my instincts to trust.

So here I am, missing more work this week (but working some from home, thankfully.) I am almost out of sick leave so if I do IVs again, I'm going to have to do all the FMLA stuff. I am currently treating my sinus infection with two orals and an antibiotic rinse, but my lungs are feeling so sticky and congested. I really just want to feel good right now.

Anxiety...not over

me, holding our beautiful le tour de femme sign

The event is over!! As much as I was looking forward to it, I am so relieved to have it over with. The biggest success was the cool people we met, some networking and getting our name out that happened. I think we sold about 17 bars, which would be slammin for First Friday at Father and Son. But the disappointing thing was that we had this awesome display of yellow ribbon and flowers we had made just for the event that hardly sold at all! When we told people half the profits were going back to the event, they thought that was so neat...but not neat enough to buy, I guess. The fact that we did not take credit cards also slowed down a few sales, as we suspected it might.

some of our ribbon and flower soaps

There was a breast cancer survivor selling t-shirts that she designs and prints herself with different cancer sayings. I bought one that says "fight like a girl" that is a really cool design and ended up going back and getting another one for a gift. Here is her website.

Anyway, at the end of the event we struck up a conversation - she offered to buy the ribbons that hadn't sold and wants to sell them on her website, which she wants to expand to include more than t-shrits. She asked if we could do them in pink goat's milk, which would be a cinch for us! She said that when she was getting chemo, her skin was SO INCREDIBLY DRY that she ended up having to get special soaps and lotions. And she found this place at the farmer's market that sold goat's milk soap that she loved. Anyway...as all good connoisseurs of soap know, once you use good soap, it's hard to go back. So she said that selling our kind of soap to the cancer community is actually a kind of service to them. Very cool!

So that we tour de femme, 2010. And I couldn't have done it without my friend, helper, and the prettiest soap pusher in the Triangle area (at least), Deana. Thanks, girl! I can't pass over Elaine and Maura either. While they weren't there, were an essential part of helping me get ready for the event. Missed you guys!!

the lovely Deana

I had hoped that after the event, I would breath a huge sigh of relief and my anxiety level would drop several notches. Unfortunately, this hasn't been the case. Which has left me in a guessing game as to the culprit of my recent spike in anxiety - is it one of the two antibiotics I'm taking? Or just an underlying problem that is getting worse? I have no idea, but my symptoms, at times, continue to create a major disturbance in my life. Last night I was up for a couple of hours trying to calm myself down enough to fall asleep. Was my blood sugar low? No. Maybe I had to use the bathroom. Yes, ok, again? Is my heart beating as fast as I think it is? Yes...ok, I need to chill...deep breaths...feeling a bit relaxed; then notice my heart pounding in my chest...maybe I should test my blood sugar again? Over and over like that. Never what I would consider a full-on panic attack, but feeling on the verge of it happening frequently.

My trusty Valium doesn't seem to be working as much as it used to. I'm not sure if I have developed a resistance to it or what. But I am definitely pursuing switching to Xanex. My friend gave me a couple and, while it took a bit longer to work, it lasted longer and was more effective. But I am concerned that it might make me sleepy, which I don't want if I'm at work or anytime I would need to drive so...yeah, I'm calling the shrink tomorrow and going to see if I can move up that appointment.

Fun stuff outta the way

I got the fun stuff out of the way in my last blog. Now time for an update about the serious stuff!

So the big, huge, ginormous news in my life is that my dad, who has emphysema and has had increasing difficulties over the last two years, has decided to see whether or not he is eligible for a lung transplant. The last time he was in the hospital, which is when I was in Montana, a transplant coordinator approached him and said that ostensibly he seems like a good candidate. So we will see how it goes.

I had talked to my dad about transplant a couple of times. I really thought that he was not open to the idea. But now, I think that "dismissal" was at least partly because his situation did not seem serious enough to him. But after having had a rough summer, things changed.

Even being the veteran I am dealing with lung disease and transplant, this is a lot of emotions to deal with. And I'm not quite sure how far I've gotten with it all. It is so hard to be so far from my dad (he is in Cleveland, OH and I am in Raleigh, NC.) It is hard to gauge how someone really is just by the phone. I'm currently planning to go up to visit him the entire week of Thanksgiving. I went up there for a week in April and it is so much better than the short visits. So I am focusing on that.

So that is the dad news. Now for the 'me' news:

1. I came down with a cold in Montana and I have been slowly, SLOWLY coming back from it. I have not been to yoga or exercised since we got back two weeks ago because I was worn out at the end of the day. Finally, today, Todd and I rode bikes downtown. It felt good to move again. And I will be back to yoga this week, too.

This is my first cold since starting on the NAC hard core and I have to say - again - I think it helped me a lot. My one year since IVs anniversary is coming up (Sept 29, baby!) and so I was really depressed at the thought that I would not make that mark because of situation that was preventable. Hopefully I won't have to worry about that now. My lungs are still a little more congested than usual, but each day seems a little better.

2. I went for a consult for another GI doctor about my gallbladder issues last week, this one at UNC, where all of my other doctors are. I really liked the woman. It was nice that she wasn't stumbling over the names of my CF medications and she didn't have to ask why I was on things. I completely agreed with her course of action 1. redraw my liver functions to make sure they are still not elevated; 2. redo the ultrasound from July to see the status of my sludge (since I have not been having too many symptoms, it may have gotten better); and 3. after seeing those results, then think about referral to a surgeon.

She did not agree with the previous doctor's recommendation of an endoscopy (nor did I). And, unlike the other doctor, she said my pain very well could be a result of my gall bladder. (Another interesting thing I found out was that the difference between sludge and stones is not a matter of consistency but rather size; so, enough sludge can cause the same sorts of pain and problems that stones do. But sludge, unlike stones, has the ability to be reabsorbed by your intestines and go away.)

3. My brother came down for a visit last weekend from Michigan. It was so good to see him! I love me some brother. He actually came down because we took my mom to see Garrison Keilor (of whom she is a huge fan) as our mother's day present for her this year (Summer of Love Tour, above). She had a great time. I was feeling pretty awful because of the cold, but I still enjoyed his visit. :)

4. My soap partner, Elaine, and I are getting ready for a big soap event in three weeks. We are going to be selling at a women's charity bicycle race called le tour de femme. So we are busy not only making soap but also trying to figure out how we are going to set up under a tent. We hope to do more craft type shows (there is this really cool thing in Raleigh called the Handmade Market that we want to get in on) but this will be our first one! Unfortunately, Elaine is going to be in NY during the event, but I will have a friend or two to keep me company.

First Friday Soap Debut

First Friday was a success! We don't have the final count on how many bars of soap we sold but there was a big dent made in our display for sure. Thanks to all of our wonderful friends who came out to support us!

Here is a brief run-down. First of all, to set the atmosphere, I have to describe the building this all takes place in to you. Father and Son is ostensibly an antique shop housed in a 100-plus year old three story building downtown. It is actually one part antique, two parts vintage clothing, three parts retro stuff from your childhood - and the top floor is broken up into several artists studios. It's a pretty funky place (with no air conditioning.)

So anyway, the evening started out kind of slow. When we got there a little past 7, the band was warming up downstairs, there weren't many people browsing. Some of our friends began to stop by and we had time to chat with them. When the third, behind the scenes, member of 808 arrived, it was time for the champagne toast!

Things started to pick up around 8 and then got really busy between 9-10. The whole night we were doing a raffle to give away a couple free bars of soap. That gave us a good conversation starter when people walked into the room. I was a little nervous to start, but it definitely got easier. I had a hard time seeing myself as an "artist" the way I felt people would see me. That's all new to me!

My favorite thing was that a couple of people came in and were really blown away by the soap. They'd say "whoa!" like they'd never seen anything like it before. One guy in particular was really enthusiastic about it. It was a neat crowd and a very good night.

Unfortunately when it was all over, I was totally exhausted. I had a busy week preparing for soap, and recovering from Boston. I've been thinking so much about the whole experience up there meeting everyone - and still missing Paul. The last couple of days I haven't felt quite right, almost like I'm about to come down with something but no real symptoms yet. I'm hoping with rest and trying to take it easy I can fight it off. I can always hope!

We are off to the beach today for a wedding. We'll be spending several days there with Todd's family and I'm really looking forward to it. I really wish I felt better! I will have to listen to my body and will continue to nap and hydrate as much as possible.

Pictures from top: our soap display; Elaine and I at our first First Friday; front window of Father and Son.

808

I am pleased to announce that after months of deliberations, we finally came up with a great name and logo for our soap: 808! Not only did we like the sound and look of "808" (it's symmetrical and we have a really cool font), but we liked the idea of having a number - something that doesn't have other associations with it.

It doesn't seem like finding a name would be a hard thing but we really struggled with it. I don't think either of us knew what a long process it would be. Many thanks to our good friend and awesome graphic designer M. who put much of her time, creativity, and love into it. :) Oh, and in case you were wondering the significance of "808," it is the address of my soap partner and dear friend E. - that house is where all the magic happens!

Round two

On Thursday we made soap for the second time in preparation for our First Friday debut May 7. Our first batch a few weeks ago we make a bunch of scrubby soaps. These are bars made of white glycerin soap with things like honey, Vitamin E oil, buttermilk; exfoliants like oatmeal, apricot seeds, pumice; and scents like vanilla, coconut, almond, lavendar - and we made many combinations of the above ingredients trying to perfect our recipe.

For round two we wanted to try one new technique called marbling and also make a bunch of embedded objects in soap. Marbeling starts with a square mold into which many random different colored layers are poured. It involves a lot of attention because you have to pour the next layer when the previous one is cooled but not too much. And you are constantly having to reheat all the different colors of soap you pour because they cool off so fast. E. was in charge of that and she did an awesome job! Here are a couple of pictures of the mold along the way and then the final product:





While E. did that, I focused on the embedded soap. First I made a bunch of small, cute things to embed. We have some really cool molds - stars, butterflies, and a new frog mold we were dying to try out. Here are some of those before we popped them out.


Although these are small (and cute!!) they proved very difficult to get out of the molds. That is my least favorite part of the soap making process. We may start to invest in some (more expensive) silicone molds that are a breeze to work with.

Step two was embedding in clear glycerin. We had another new mold (especially for the frogs!) that we were excited to use. Unfortunately it didn't turn out. The soap was too cloudy and the frog wasn't visible. Some things you just never know until you try. Without another mold big enough for the frogs, we decided to wrap them up and sell them on their own. (And I might have saved a couple for one of my nieces whose birthday is coming up and who I recently discovered loves frogs.)


The butterflies and stars turned out well. I love the two shades of purple stars - that is my favorite bar of the ones I made. Here is a picture of that bar as well as a few other goat's milk bars (wrapped!) that I made - lots of pink and purple this round!




The lesson for the day was that while E's bars turned out the most awesome of the bunch, she made 8 bars of those while I made - no kidding - 25 other bars. We need to figure out a way to speed up this very awesome technique. The frog embed bust was a big bummer, too. We will try to see if there was something we could do differently to get it to turn out.