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.

The Summer Without Sun

It's largely been a shitty summer. I'm not going to say that everything went wrong that could have, but at times it really did feel that way. Between bad news, house problems, pet ailments and a few health bumps, we have absolutely earned a problem-free rest of the year. Perhaps some bits about all of this will come out in my later blogs, but for now I am just going to talk about my mysterious allergy adventure.

It started in early June the day I drove up north for the Transplant Games in Cleveland. That morning, I had gone to Duke for labs and another neupogen shot to boost my white blood cells, which had been low for months. Between then and when I arrived in Cleveland, 10 or so hours later, my face had flared up into a red, itchy, bumpy mess! And I'd itched my forearms so much that they were bruised. Thankfully, I was staying with my step-mom, a retired dermatology nurse, so she knew just what to do to calm things down. We went back to basics with cleanser, hydrocortisone and some benadryl. It took several days, but things did improve.

Things went from bad...

...to worse over the course of this ordeal.

The next problem arose when I tried to find a sunscreen to wear while I was out at the Games. Many of you know that transplant patients have a 50% increased risk of developing skin cancer than the normal population. So daily sun screen is part of my everyday routine, and when I know I'm going to be outside I'm even more careful. Luckily I did have some sun-protective clothing with me but, honestly, most of it is such a drag to wear! Plus, I always like extra protection on my face anyway. We literally tried every brand of non-comedogenic sunscreen available in the grocery store and every single one of them irritated my face. This was the start of my summer without sun.

over-the-counter non-comedogenic sunscreens

Moving past some unimportant details, the rash was basically gone by the time I got in to see my regular dermatologist. But it was such a mystery. Had the rash been from the neupogen shot since it first appeared the same day I had my most recent injection? I racked my brain to figure out any new products I may have used and to which I may have had a reaction. I could think of nothing. And an allergic response to neupogen - especially after having had it several times - was apparently not very common. We were puzzled.

Then it came back - we didn't know why - and I went back in and my doctor took a biopsy. And I waited. By this time it was past the date of my needing another neupogen shot but the doctor wanted me to hold off until the biopsy results came back, so I was just hanging out with low white blood cells, not being able to use sunscreen...it was great. Finally, the biopsy came back! It showed an inflamed follicle; it was a little ambiguous what the cause could be, but since I'd seemed to have had an allergic reaction that brought on the rash in the first place, we decided to do an allergy patch test. 

During the month I waited to get in for my first of these appointments, I had dreams of finding a magical sunscreen after my allergy testing. I was told that the skin test doctor was a "miracle worker" at finding products people could use. And that after my testing I would have a "safe list" of products that I could use. In the meantime, still no sunscreen, still covering up in the sun (hot!), and sometimes just avoiding it altogether, staying home watching Netflix instead.

a pic of filling up the patch slots

Patch testing is not like allergy testing with tiny needles. Instead of needle pokes, small amounts of chemicals are placed on an adhesive strip with ten small circles into which they are placed. Also, instead of finding out results right away, the ordeal is a six-day process that allows for a delayed reaction to show. Without further ado, here is a rundown of my testing!

• Day 1: I arrive at my appointment with every single product that I use on my face and skin. It fills a big canvas shopping bag. Based on chatting with me, the doctor orders the Duke 80 (the 80 most common chemicals to which people are allergic), the fragrance (45), the sunscreen (21), the cosmetics (39) and the essential oil (11) panels plus three extras. Then we look at ingredient lists of all of my personal products. I probably had close to 60 and she narrowed it down to 26 for testing. It occurred to me how strange it was that even though I use mostly natural and organic products (I realize, those terms can be relative) there are still a ton of chemicals in those things! (808 Side note: It really made me appreciate the "purity" of the soap we make, using things like glycerin or goats milk base, real honey, oatmeal, coconut oil, apricot seeds or cocoa beans.)
  
  

  

  All of my products.

  
  Next they prepare the trays. All of the chemicals must be put out fresh so this cannot be done ahead of time. While one person works on setting up the usual chemical panels, another inventories all of my personal products and takes a tiny amount of them and puts into the circles on the adhesive strips. It is very meticulous work and gives me time to fill the nurse in on all of the pet drama we've had. I joked that I should have run across the street for an iced coffee because this ended up taking at least 30 minutes.
  
  Finally the fun begins! They take each strip, about six inches long and two inches wide, and stick them methodically to my back, starting up top and working their way down. They make purple marks around all of the strips so they will be able to tell where the dots are when the strips are removed. The doctor's assistant runs out of room placing the strips on my back with about 6-7 strips to go, so we also end up using the top of my thighs. I wish I would have thought about how this would affect walking! But we couldn't really use my stomach because of all of my surgery scars and various marks and bruises from my insulin pump and continuous glucose monitor.
  
  

  

  Not enough real estate on my back.

  
  
  The last step is to secure everything. Meticulous nurse takes specially designed non-allergic torture tape about two inches wide and tapes over every single strip on my back both horizontally and vertically. And then some. By the end, when I stood up, I felt like I was wearing a straight jacket. It was hard to move, bend, twist, and it ended up a tricky job to turn my head to look back while driving on the way home. My job is to keep this tape dry and intact for the next two days: No showers, no sweating (do you know how HOT it's been??), no exercise, no scratching, no tight clothes, no sleeping on my back (sleeping was actually the worst, even not on my back. Basically, do anything at your own risk of having to repeat this whole hellish exercise. It was not fun, people. But it did end up being a very good party trick! I love showing off medical weirdness.
  
  

  

  A strange picture of my back bound up.

• Day 2: Two days later I go back for them to remove the tape. The excitement is palpable. Few things have ever felt better in my life. However, even after removal, my back and legs were still sticky, and I still cannot take a shower, so I spend the next few days with clothes half sticking to me and, again, trying not to sweat, wearing clothes that will not be ruined by the purple ink markings on my back and taking sink baths. I had a few random itches when the tape was on, but so far there is nothing turning red or starting to turn red where the samples had been.
  
  
• Day 3: After a very dirty and stinky weekend during which I probably moved and sweated more than they would have liked, I go back on Monday for my final reading. But I'm not expecting much. I have watched my legs and had several people look at my back and nothing, nothing is even close to red or suspicious looking. The doctor diligently feels every single row of spots. She's looking for any skin that's raised or, obviously, red. She finds nothing. Well, one kinda, sorta, maybe, but it's a product I haven't used in a very long time so that's really not helpful.

So what does all of this mean?

It could mean several things, none of which mean that an iota of good came out of this process. First, my immune-suppressant medication could have affected the test. Sometimes that happens with transplant people. Secondly, the test could have shown a false negative. This sometimes happens with anyone. I also think this could mean that either substances got rubbed or sweated off, although they said they suspected that. Third, the initial breakout could have been from something other than an allergy, but the fact that a seemingly allergic reaction corresponded with it sent us on the wrong trail. Forth, the test could have been accurate and the massive breakout was just a one-time, freakish thing for an unknown reason.

I highly doubt that last thing, and I've actually tested it since: I went back to one of my old SPF moisturizers (the doctor said I could run these self-tests to try to see which things were really ok or not. It involves putting the substance on your skin - not necessarily your face, but I thought what the heck, I'd stop at the first sign of irritation - twice daily for a week or two to see if redness/reaction occurs) and began using it for a few days. At least two times that I put it on my face, my arms would violently begin itching right away. Strange, but repeatable, so that one is off the "safe" list. I will set it aside to see if I can start seeing a trend with any of the other products I do.

The really good news that I discovered during all of this is that I tolerate most of the Bare Minerals products very well. I have used their make-up in the past when my face would act up, and their face wash for years - it's the most gentle, least drying face wash that I've found. Unfortunately, they have now stopped making that kind of face wash, but I have found one from their new line that works almost as well, and, anyway, I don't react to it. I have also purchased a plain facial moisturizer from them which is so nice after only being able to use a thick, oily, ingredient-less moisturizer called Vanicream these last few months. And - big bonus - I also found that their SPF 50 mineral shield will not make my skin break out!! Of course this stuff is pricey, but it is worth it to finally have a sunscreen I can safely use.

Bottom line is that I have no idea what brought on this allergy even after all the sweat and stink and experimentation. I hate mysteries like this! So I'm cautiously going forward, trying things one by one, being disciplined even though I miss my old lavender and other natural and organic hand and body creams so much. In the end, I know that I will likely be donating a lot of my products to friends, sadly, and that I will have a much smaller treasury of face and body products to use. I enjoy that stuff so much. I really do hope  that most of this ends up to be a fluke and that with removing a few of my suspicious products, things will stabilize again.