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.

A special day

Today is a special day. I have been thinking all day about the best way to capture it, to express my happiness and gratitude of being committed to Todd for two years.

I am thankful for Todd every single day... For his support, encouragement, ability to set me straight when I am feeling lost, for his willingness to help and uncanny ability to know when I don't want help, for his intelligence and meaningful insights on the world, for my favorite person to sit down and have a beer with, or watch a movie with, to go for a bike ride with, to have silly imaginary conversations between our pets with...I love you lots, T! And I am lucky to have you. Here is to many more years.

Good, active, yet gimpy week

I am officially off the lovenox shots since Monday and I have to say...it is a little anti-climactic considering how much I was dying to be off them the past six weeks. Nonetheless, one week of no pokey is definitely a good thing.

The du jour happening for the week has been the issue with my leg that I spoke about in my last blog. I was able to get things loosened up but the pain and stiffness in my leg and glutes has continued. Two visits to the chiropractor later, I am able to walk almost normally and my muscles have loosened up to the point where at least I feel I can stretch them productively on my own, which is good. I'm hoping for a massage this week to continue loosening things up. The muscle twitching I was having has stopped, but - somewhat alarmingly - my heel and part of my foot are still partially numb. I am keeping a close eye on that.

Anyway, the other fun thing from this week is that I ended up catching Todd's cold. Fortunately, it has not really slowed me down at all, seems to be affecting me mildly. Which is really awesome. I am still feeling really good overall.

It has been so nice out this week - 70s and low 80s, sunny - that we went for a couple of really good bike rides downtown. It is so fun riding downtown - makes me feel so urban. :) Friday night, we rode downtown to dinner, then to a show; Saturday we sat outside and had lunch, did some much-needed yard work, then met friends out for a birthday celebration. Today, I am going to go back to yoga (took the week off because of my leg), wrap up soap in preparation for First Friday, and then grill out. I'd say that is a very good weekend!

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.

Mother Nature is a Bitch

My inner kid wants to do some complaining about what a pain in the ass it has been dealing with this blood clot. There continue to be issues getting my coumadin levels in range and I had one bleeding incident this past week. Fortunately, it resolved itself and I am fine now - except I am left with the near constant dread that something could happen or go wrong at any moment. It's not fun.

Bruises from the lovenox (the other thing is the insertion site for my insulin pump); what you can't see are the speckles from every single shot I've had to give all around my abdomen.
My doctor: "I've seen worse."

But I am also tired of complaining about all this, so that's all I'll say about that.

Couple of things I wanted to talk about:

1. We had some CRAZY storms come through the city yesterday - crazy as in tornadoes, many trees down, lots of power outage, etc. I was actually in Durham when it happened. When I came home, at first I didn't even realize much had happened. There was some debris and small branches in the street but nothing major. Then I took a walk around the neighborhood... the streets behind us got hit really hard - a giant tree tipped over and crushed a pick-up truck; a tree fell across the road; a tree crushed a storage shed and another fell over a big power line. It was pretty crazy.

Big tree that fell over and crushed a pick-up truck about a block from our house

Fortunately, my nagging Todd to get our trees trimmed last January really paid off. We had no major limbs down in our yard, no trees, and, luckily, we did not lose power. (See my FB page for more photos from the 'hood.)

In a neighborhood a couple of miles from us, some of our friends were not so lucky: one friend had a tornado come through her back yard. Two trees fell on her house but she was okay. Another friend had trees down, a storage shed flipped over, fence destroyed and neighbors on both sides had damage to their back decks (one almost destroyed.) Everyone I know over there is without power.

2. I spent Thursday, Friday and part of Saturday attending the Full Frame documentary film festival in Durham. I LOVE documentaries. Our friend works on the committee and has generously given me or me and Todd passes for the last several years. Unfortunately, two years ago we either had our ceremony or were in Ireland; last year I went to go visit my dad after he'd gotten out of the hospital; so I hadn't been able to make good use of the pass until this year. I really experienced the festival - went to 3-4 movies on Thursday, 5 on Friday, 1 on Saturday (I was getting very tired by then.) :) There were some amazing documentaries and I am so thrilled that we have a festival like this so close to where I live.

3. After my Saturday movie, while Raleigh was getting pummeled with storms, I had a chance to meet up with a long-time online friend with CF named Melanie. I have probably known her for 6-7 years I would guess. She lives in CO but has moved to Durham for health reasons in the last year. I think we both knew that we would hit it off, and we totally did. We had a really enjoyable, relaxing time together. I look forward to seeing more of her now that we have connected.

I usually don't like to make my posts super long, but I had to tell you all that stuff! What I was originally going to write about was my "Goals for 2010" that I created last year on the sidebar of this page:

• Paint all the rooms inside my house
• Clean out the attic
• Exercise or yoga 5-6 days/week
• Simplify! Don't buy stuff I don't need
• Be punctual
• Check out other yoga studios around Raleigh & save for yoga teacher training
• Start selling our soap!

You will notice the list has been replaced by a new list for the coming year. However, to reflect on these a little... I did not paint all the rooms in my house; however, I did paint our bedroom an amazing shade of blue that makes me very happy. I have a plan for our bathroom, which is the next target. I still want to paint my office purple. I am formulating a plan for the house - like what to improve/in what priority vs. do we fix up basic stuff and then someday move - but I am making progress on that as well.

After I painted the bedroom

Attic: this is something that simply must happen soon. The reason is that one of the next home improvement things I want to do is add insulation to the attic, and all our stuff will need to come down to do that. So I want it to be as organized - and paired down - as possible. I would call Todd a pack rat, but it's really just laziness..he's a lazy rat lol. But I love him. :)

Exercise: certainly this goal has waxed and waned. Suffice to say that when I am feeling well, I usually do a pretty good job with this. Right now I am staying really active, I am happy with my weight - I have not ballooned up since my last infection - and it feels great.

Simplify/Punctual: I still have room to go with simplifying, but I have been a lot more conscientious about it - and I think as a result of that I have made better purchasing decisions. My punctuality has improved a lot. I am hardly ever late for work; appointments I could still be better about.

Yoga: I did find a studio that I like - yay! But I have not attended as many classes there as I would have liked. Still need to work on finding a weekly class that fits into my ever-changing schedule. The teacher training I have decided to hold off on. It's not a commitment physically or financially that I am willing to make at this time. Plus, I just don't feel the desire like I did before. Maybe sometime.

Elaine's awesome marbled bars

Soap: Well I think you all will agree that I have knocked it out of the park on this one! Our soap selling at Father & Son has been a big success. We have been able to make a small profit which surpasses our original goal of being able to break even. We have met some great people that are part of the Raleigh art scene. Most importantly, we have remained true to our motto of "Keep it fun!" There were definite moments of feeling out the best direction for us to go in order to keep it fun for both of us. What can I say, Elaine and I are great partners and work really well together. We respect each others' wants and needs and we have been able to maintain an operation that provides us both with a much needed creative outlet.

Here's to a great 2011!

Weekend with family

Brother Nathan, me, Todd, mom, Uncle Roger, Cousin Anne and her daughter Miranda on my back deck

In the interest of trying to blog more regularly - here I am!

Last time, I held off talking about my mom's 70th birthday weekend. A couple of months ago, I had the idea that with mom turning 70, we should do something special. That turned out to be a very successful gathering of her fairly small family that is very spread out (Florida, Pennsylvania, Virginia, Michigan).

My brother and I told my mom that we and Todd were going to take her out to a nice dinner at a surprise location. That gave me the flexibility to find a place that would fit everyone who could come. We ended up at this family-owned Italian place downtown - the food was good, the wine better, and the wait staff was top notch. We had a private room, which was cool. And boy oh boy was mom surprised! We had a really lovely evening - and weekend - with family and one of my mom's oldest friends from Michigan.

The weekend was a MUCH needed reprieve from my slugging around here.

Basically my health stuff has leveled off, although I have still not been able to get my coumadin levels to where they should be (which means I'm still doing the terrible nightly shots.) Today marks approximately the month anniversary for discovering my blood clot. Risks start to taper off increasingly after six weeks, so I am well on my way. And I FEEL good, which is always great.

But I have still been having some mental struggles. My anxiety over this situation (I hope) peaked on Sunday... I had my first real panic attack in a long time (I'm talking years.) It was scary. While I've had a lot of small incidents, I really had a hard time calming myself down from this. I was convinced there was a problem with my heart, which was racing and pounding - I even started to pack a bag for the hospital.

I think what happened was a perfect storm of being at the beginning of a Prednisone burst (can make you feel speedy, or can make your heart race), starting on a new medicine that was making me feel a bit funky, being at the end of a week during which I had experienced a lot of off-and-on anxiety, and, possibly, watching an intense hockey game. :)

Without publicly divulging too many details of my mental health, I will say that I had an appointment with my psychiatrist that week - timing of that could not have been better. And he started me on a new medicine, hopefully temporarily, to help with my funk and anxiety of late. So far so good with that, although I hated the idea of it. He also told me to not hesitate to use my Xanex, and even suggested I take one regularly before bed to help a bit with the next day.

Mental Xanex

It has been an eventful couple of months since I last wrote. I am usually more than happy to talk about my health, but lately I have sort of gotten tired of that. It is the same sad story, and I'm so ready for this chapter to be over.

Brief (and I mean brief) of the last couple of months:

- I recovered well from my IV antibiotics in December and felt good until mid-January. Immediately upon return from a long weekend in Cleveland to visit my dad, I developed what turned out to be the flu. I went to clinic looking pretty much the worse they'd ever seen me and end up in the hospital for four nights. (We missed a planned overnight to Charlotte.)
- My last day in the hospital, I decide to take the plunge and get the much discussed and pondered port-a-cath instead of another picc line. (It will make the IV process easier and it will allow me to stick more to my normal routine during that time as well.) The procedure goes really well!
- A week later, I start having radiating pains into my wrist and shoulder. Turns out to be a blood clot. I am hospitalized again after a fairly traumatic night in the ER, and put on anti-coagulants. I am scared I will lose my port but that turns out to not be an issue at that time. I make a deal with the doc that if he lets me out, I will not get on the plane the next day for Vegas. I miss our much-anticipated vacation to Las Vegas - pretty much the icing on the cake of shittyness.
- The treatment for a blood clot is a pain in the ass. Well, literally it begins as a pain in the abdomen with these horrible shots I had to give twice a day until my coumadin levels were stabilized. (Coumadin is a very tricky medicine to regulate and has a very narrow range of effectiveness.) I start a series of appointments to the coumadin clinic at UNC where I will be monitored (i.e. on coumadin) for at least three months.

For those of you who know nothing about blood clots (which was me three weeks ago), the big danger is a pulmonary embolism - where a piece of the clot breaks off and gets into your lung causing major problems. Major as in, possibly over half the people that get them are dead within 2 hours of the event. My doctor guesses the odds would be even higher for me.

The signs of a pulmonary embolism, it turns out, are extremely close to many things that are common for people with CF, especially if there is a history of anxiety: Sharp pains that increase when you inhale, sudden shortness of breath, rapid heart rate, an unexplained cough sometimes accompanied with blood. The bottom line is, are you freakin' kidding me?!? I have pain in my lungs all the time, I cough all day long, and shortness of breath and rapid heart rate are really common with heightened anxiety. So in addition to being anxious the PE might happen, I worry that the anxiety symptoms themselves could be the start of a PE!

But back to the anxiety in a minute. Being on coumadin is tricky for me for a couple of reasons. One, I have been known to have lung bleeds from time to time, and if that were to happen now it would be greatly exacerbated. I have had to cut out herbal meds and supplements because so many things can react with coumadin. I have cut one of my inhaled meds that can increase the chances of bleeding to once a day. I cannot take any OTC meds besides Tylenol without explicitly asking them. And lastly, I have to try to be consistent in the amount of green leafy vegetables that I consume, because Vitamin K in those interferes with it as well. Other than that, I'm to carry on with life as normal! (Haha.)

So, while my lung bleeds are often tied to something (i.e. sickness or being around smoke), they have sometimes - like on the night of my 30th birthday dinner - been perfectly random. I went to the bathroom. Cough, cough. Oh my! It even happened in yoga one time after I bent over quickly. Fortunately it has never been a lot, but man, it is one of the scariest things I have ever experienced. A tiny bit of blood like that makes a big impression. So I have been extremely paranoid and watchful for this to happen since I was released from the hospital.

In addition to that, every ache, pain, etc. is cause for alarm. If it is in my arms or legs - is that a sign of another clot? (In my defense for not sounding totally looney right now, my coumadin levels dipped dangerously low last week so that I had basically no protection. They could have been low for as much as a week, so I thought it plausible that something new could have cropped up.) If it happened when I exercised - could that be an irritant to cause bleeding? (Exercise is a trigger for some people with CF.) Which brings me to last Friday.

I was driving to work and had some sharp (although mild) pains in my lung. I spent the next couple of hours agonizing (i.e. completely freaking out on the inside) on whether or not to page the doctor. I felt surely they would send me to the ER for a CT scan to be cautious I wasn't having a pulmonary embolism. (Side note: we had a surprise 70th birthday party planned for my mom that night with family coming in from four states - I did not want to sit needlessly in the ER and miss that.) But, a pleasant surprise, they did not.

I developed another nagging pain in my lung Saturday night. It seemed similarly mild, but when it came back again this morning in the same place I was concerned enough to page the doctor again. Again, they reassured me, if this was a life-threatening PE, I would definitely know that something was majorly wrong. Whew!

So yes, I have been somewhat down, also angry about the blood clot, and sad to have yet another thing to deal with for my entire life. (More on that in another post, if I think of it.) My anxiety has been pretty bad - I've regularly had mini-panic attacks or the start of a panic attack that I was able to divert. I am proud that I have gotten through all of this with approximately 2 Xanex. But, as I told Todd, I have been a frequent user of the mental Xanex. It works pretty well, but I'm hoping my need for it will soon be over.