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.

Adventures on IVs

Sometimes it seems like every day on IVs is an adventure. Here are some of the highlights and lowlights of the past week.

• Last Saturday, I had my first Tobra levels which were, thankfully, right on target. That means my dose was good and, more importantly, no rechecking necessary after a changed dose. (Tobra levels require two sticks, pre- and post-Tobra.)
• On Sunday night my arm started getting really red (partially) under where my dressing was. This required a visit from the nurse Monday morning (the third in four days). We discovered that I was probably allergic to a new type of cleaner they use in the dressing change kits. To be safe, we went back to the old cleaner and also used a new kind of dressing for people with sensitive skin. It has been better, but still a bit itchy under there. I think it's just the dry weather.
  
• Tuesday evening was the second evening in a row that I noticed slight ringing in my ears, more like a high pitch sound, actually. It only lasted about 10 seconds. Ringing in the ears can be a side effect from Tobramycin and can lead to permanent ringing - yikes! Tobra can also cause temporary or permanent hearing loss. Unfortunately, it is has happened to a good number of people I know in the CF community. I've had the "ringing" happen before sporadically, but never consistently. My doctors and the home care company were quite concerned...they wanted to know the exact details. Luckily, I had Tobra levels scheduled again for Wednesday so we could make sure my dosing was correct. Unluckily, I've found out hearing loss/permanent ringing is something that can happen even if your levels are in check.
  
• Second set of Tobra levels on Wednesday also ended up being good. Yay! Unfortunately, the second poke hurt like hell. In fact, it still hurts. I admit, I can be a baby about blood draws, but ugh. Sometimes it just hurts like hell. Fortunately, not very often. Question mark on where they are going to draw my next set of levels now that my good vein is out of commission for a while.
• Mid-week was when I really started feeling better from the meds. The biggest change is that my energy is so much better. But my temp is also down, lung pain gone, appetite WAY up...now I'm just waiting for things to look a bit better with my lungs. Still, it's so much easier to deal with all this shit when you are feeling halfway decent.
• Both Wednesday and Saturday, we went to see two good Hurricanes games. Not health related, but still exciting. :)
• Friday night - I had my first beer in a really long time. It tasted really good. Recently, I have basically cut out drinking and caffeine - just to give my body and my mind a break. I like it.
  
• Last night and tonight, I got an "itchy arm" in the arm my picc line is in. It started with a "scratch me" feeling and before I knew it, my arm was all red. No idea what caused it but I hope it's not related to any of the medicines I'm on.
• Did I mention I'm not looking forward to Tobra levels on Wednesday?
  

I guess that's all for now.

Update: Monday am - discontinued Tobra due to overnight ear-ringing (tinnitus). While I am happy to have one less thing to do and not get levels drawn anymore right now, I am a little freaked out about what this may mean for the future. It sucks to have complications with (what might be) the only thing to really kill one of my bugs.

I tried to talk Dr. C into half-dosing until Thursday (which will be the 2 week mark) but he didn't think that was a good idea. He cited some study that shows most people get all the clinical benefit they are going to get after 10 days on IV antibiotics, and I am at 10 days now, so not the worst thing in the world. Honestly, I would be more freaked out right now if I wasn't feeling better. In the future, he said, we may either do Tobra or Tobi, but probably not both at once anymore. And I am to follow up with the ENT for a hearing test in a couple of weeks. Many hearing complications during IVs can be reversed, but some, sadly, cannot.

Sun and sand and IVs

Our nephew, Sawyer, making a sand castle

My life has not been lacking of medical adventures since I last wrote. But first...

I spent an amazingly awesome and relaxing weekend with Todd's family at Holden Beach. While not an ideal time for a trip out of town with how I've been feeling, our two-and-a-half-year-old nephew and his mother had flown out from Montana and since we do not see them much, I definitely wanted to spend time with them. We had thought we would go to the mountains to see them but it turned out they wanted to come to the beach. So the two of them, plus Todd's dad and brother, the two of us, and four golden retrievers all packed into a house that Todd's aunt generously lets us use down there. We had two amazing beach days of weather in the 70s, sunny, beach practically to ourselves. It was little Sawyer's first trip to the ocean so we got to see him have a blast with that. We also ate a ton of fresh shrimp, and I attended my first oyster roast! (I had two oysters and they were kind of gross, but not as gross as I remembered them to be. I gave it a try at least.) It was a really great time.

So, rewind: Last week's adventures began on Tuesday when a co-worker pointed out to me that my "feeling extremely speedy" side-effects from the Wellbutrin XL I had started weren't necessarily normal. I did some research and found out that, indeed, a large amount of people have had issues (of the same sort) with generic Wellbutrin, bupropion, which is what I was taking. I contacted Dr. M - he had heard of this but thought it was an issue that had been cleared up years ago. I guess not! (While the two substances are chemically the same, or, at least very close, the "extended release" of the generic has not been thoroughly studied. At least that is what I gathered through my research.) So far, so good with the actual Wellbutrin XL.

Next up: Wednesday night we went out to celebrate a friend's birthday. I had a good sized meal and also dessert. I was stuffed. I came home and Todd stayed out for a while. After a bit, I thought my blood sugar was low and indeed it was about 40 - dangerously low. I drank some juice and started eating sugar, but I was so full it was becoming uncomfortable quickly. I started to worry, what if I got sick and couldn't keep sugar down before my blood glucose could rise? I kept checking and my blood sugar would barely rise or sometimes fall back. What the heck was going on?!

It took all my self-control to not completely freak out. Here I am, 11:30 at night, alone at home, scarily bordering on losing consciousness or what I didn't even know. FINALLY, it came up to 70. I was feeling nauseous and bloated and decided to take a shower to try to relax and take my mind off things. I have found that distractions are amazingly good for anxiety. When I got out of the shower, I was still feeling shaky, although my sugar hadn't dropped much. I got sick. I ate more sugar. I promised myself that I would never again not take my blood sugar before eating (a bad habit I have and something I had done that night.) Finally, finally, finally, it got better. I took a Xanex and, when Todd got home later wondering why I was still up at 1:00, I burst into tears...

The next afternoon, another mini-debacle. I had a late lunch, did my insulin (of course I was diligently checking my sugars from the moment after the previous night's episode), and was on my way after work to get my Xolair and allergy shots and noticed in the doctor's office that I was about 60. I politely asked for some juice since I was sick of Starburst and sugar packets from the night before. And I kept drinking more and more but my sugars stayed the same for a while before coming back up. Something truly odd was going on!!

Thus began a weekend of scaling back settings on my pump. I would get low after a meal, scale back my bolus; I would get low between meals, scale back my basal. It took several frustrating days (and by the way, you know you've been checking your blood sugar a lot when you prick yourself and blood comes out of four places on your finger) but I finally figured it out by Saturday. But what in the world had caused it??

The cause is a total mystery. Both the Wellbutrin and Actigall, which I started a few days before this happened, do not have low blood sugar associated with them. Could the Actigall have broken up something in or near my pancrease, maybe in a duct or something, and now insulin can get out more easily? That seems plausible to me, although there is absolutely no evidence to support it; the others are that one of the medicines caused me to become more sensitive to insulin, that the medicines somehow interacted in an unusual way, or that it was just completely random! In any case, I am on almost half the amount of insulin that I was before this happened. That is amazing and a really good thing; it's just that I want to know WHY!

Is that enough adventures in one week for one girl? I think so! But unfortunately, this is a new week. While my weekend was amazing, I for whatever reason today woke up feeling what I can only describe as "cystic-ey" ... my lungs feel tired and perpetually full of junk; and even after a good cough there's another rattle behind it. So after trying so long and so hard to get over what probably started as a cold two months ago, I am getting a picc line placed and will start soon on IV antibiotics. Were IVs inevitable this entire time? Maybe... but I was happy with the progress I was making the last few weeks, and there was too much going on for me to tell for sure my lungs were the things that needed more treatment. I think I made the right decision. Wish me luck!

On hold

Gallstones can cause complications in the gallbladder, liver, pancrease, or the ducts around those organs - depending on where a stone gets lodged

It has been an event-filled week, without being busy. Why? Because I have had appointments and medication changes but haven't done much else - been focusing on me and what I need to do to get back to 100%.

When I wrote last Sunday, I was having a lot of issues with anxiety. It hasn't gone away completely, but it has been much better overall this week, and for that I am thankful. More on that in a minute.

I went to see the gallbladder surgeon on Monday. I talked a lot to both the doctor and the resident there, both of whom I liked decently. From their point of view it is pretty straight forward - they recommend surgery (laparoscopic) to everyone who has any kind of problem that they think likely related to sludge/stones in the gallbladder. So it didn't matter to them that my symptoms are "minor" - the only time they recommend pills (the only alternative treatment) to people for gall stones are if they are not strong enough to go through surgery.

But I became interested in the pills when I learned from a fellow cystic that she had been on the medicine (Actigall) for years and hadn't needed surgery. And I had learned from Dr. C, my CF doc, that many people with CF are on Actigall as a preventative (it's supposed to help break down stones and prevent new ones from forming.)

The drawbacks to Actigall, according to the surgeon, were 1) It's expensive 2) I'd likely have to be on it for the rest of my life. I guess surgery is supposed to seem like a piece of cake compared to these things?? For one, it's not expensive - it comes in generic and the full price for a 3-month supply was $170 (I paid $30). Secondly, has this guy seen my sheet of meds? It is literally almost an entire page of stuff...stuff that I will have to be on for the rest of my life.

So the surgeons did not convince me, at least not for now. I want to try the Actigall and see how it goes. (The surgeons weren't opposed to my proposed plan.) However, these guys did make me feel like I would be in good hands if things got worse - and they very well may - but there is just no way to tell. And I don't feel confident enough that they will to take the plunge into surgery now.

Whew! That is a load off my mind. I hope between the Actigall and some tweeks in my diet, I will be good to go.

Speaking of my mind... I went to see a psychiatrist on Wednesday. Throughout my life, starting in childhood, I have been to various councilors. But this was, I think, my first real deal shrink with a prescription pad! His name is Dr. M and he is retired from UNC in private practice. He seemed very laid back, level-headed, soft spoken. I told him about all that is going on in my life right now...I cried some...nothing abnormal.

When he was trying to determine whether or not I am depressed right now, the first thing he asked was how had I been sleeping? I laughed. Sleeping has been a complete debacle for the last two weeks in our house...I ended up on the couch about half the nights because I would wake up from Todd's snoring in the middle of the night and not be able to get back to sleep. One is NOT getting a good night's sleep if they are 1) waking up 2) laying there for an unspecified amount of time trying to fall back to sleep, all the while (sorry, Todd) cursing their snoring partner and 3) eventually having to go make up the couch to sleep on and reset a different alarm. So yeah, I failed that question. Or passed with flying colors, depending on your perspective.

How about my appetite? Meh - been terrible, but that's mostly because of the antibiotics, I think. Have I been crying more than usual? Uh, yes. I had a meltdown in the office of the new head of our department two days earlier (don't worry - it was totally fine, she is a very caring and understanding woman. But, it's evidence that I am really overwhelmed.)

I left Dr. M's office feeling a lightness that I hadn't felt for a while; and wondering why the hell I hadn't thought of going there sooner. I also left with three prescriptions - an antidepressant (Welbutrin, which I was on for a year about 7 years ago), a new med for anxiety (swapped out Valium for Xanex), and something to help me sleep (trazadone). So much starts with a good night's sleep - I have to get that under control for my brain to normalize again.

I started the Wellbutrin on Thursday and it's making me a little *nuts* (very speedy feeling during the day) - so far I've been able to deal with it, though. I know it will get better. And it hasn't led to any anxiety, thankfully. In fact, I've not used the Xanex except to help me get to sleep, so that is good. If you're wondering why I haven't been using the trazadone for sleep, it's because when I got home and looked it up, I found out it is an antidepressant that is used "off-label" for sleep. For some folks, it's a miracle drug - non habit forming, you can take it as needed, it's cheap. But I didn't want to throw that into the mix since I am already feeling odd with the Wellbutrin and still getting used to Xanex.

So that was basically my week - interspersed with waxing and waning on needing IVs or not. My lungs are still doing pretty well, but I had a couple of "yuck" days (no fevers, though) - but I began to wonder if I couldn't remedy that with some good nights of sleep and, frankly, being less depressed. So I push on...

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.

Not so flying colors

An x-ray of a healthy set of lungs

I wish I could say that my one year anniversary since needing IV antibiotics (9-29-10) passed with flying colors. But unfortunately, this isn't the case.

Under one theory, the so-called "Montana cold" never really went away and is now causing me to need intervention. Under another, a series of other things converged to lead me to the same place. Either way, a couple weeks after all my viral symptoms were gone, I was feeling lousy in several ways (see my last blog) - the only exception being that my lungs felt fine.

Tired of not feeling myself, I contacted my doctor Sunday night and we arranged for me to come in Thursday to discuss my recent anxiety/depression and his thoughts on gallbladder surgery. Then, that night, I woke up at 6:30 am feeling like crap, with a fever and chills, and a pretty decent pain in my left upper lobe. I contacted Dr. C again Monday and he got me in this morning.

The verdict was mixed. PFTs were fine. (Sidenote: I expected this, but still, yay! After a month of hardly any exercise - first the cold and then "exercise time" turning into "nap time" - I was pretty psyched.) X-ray showed a spot of infection in my left upper lobe, where the pain had been. Let me say, things are not nearly always this neat when it comes to x-rays and symptoms. I have been on IVs before with a nearly normal x-ray. I could only wonder if the spot was there before the pain or vise versa. Because, really, my lungs have been totally fine lately.

Everything else (oxygen level, weight, etc.) was fine.

But, one plus one equals intervention: The x-ray/lung pain or the fatigue/malaise might not be enough on their own, but together, they spell antibiotics. IVs were discussed, although not necessarily recommended. Since my lung symptoms seemed under control (pain was much better today), we decided to do a tobi/mino/bactrum cocktail. (Tobi is inhaled Tobramycin twice per day and Minocycline and Bactrum are antibiotics which target the other major bug that I culture.)

In discussing the possibility of an antidepressant, Dr. C was quick to hand me off to a psychiatrist. He says he has a "low threshhold" for sending folks for referral because 1) talk therapy can be as effective as drugs with none of the side effects and 2) those people are much better versed in the nuances of the medications. (I only half believe that, knowing that much of the process of finding the right med is trial and error. But anyway...)

There was one positive development...switching gears here to the gallbladder issues. Thanks to my wonderful online CF forum, a drug called Actigall was suggested to me. This medicine is used to break down existing gallstones (or, in my case, hopefully, gall sludge) and also to prevent formation of new sludge/stones. One of my CF friends has been on it for years and has not needed other intervention. I hope this will be the case for me. Anyway, my GI doc approved it, and Dr. C wrote me a script, so I am anxious to give it a go.

Since it was obvious the gallbladder surgery had been weighing heavily on my mind, Dr. C suggested that I talk to a surgeon at UNC to see what they recommend based on my information. We agreed, the more information, the better to help me make this decision.

So I'm on this antibiotic cocktail starting tomorrow, and missing at least three days of work this week. I hope I start to feel better soon.

Busy bee

I've been busy.

I am always busy, but particularly with the soap event we have coming up in a week, there has been more to do than I ever imagined. Not that I am doing it alone. But it has taken more time and mental energy than I thought.

I want to tell you about something strange that happened. First of all, my energy still is not my normal since my cold four weeks ago. It has been hovering around 90% for the last two weeks. It's enough that I'm working my normal hours, but not enough that I've been able to exercise like I would like to. (Sadly, that is the thing that gets dropped after work, errands on the way home (which sometimes seem endless), napping, and doing therapy...by then it is dinner time.)

Starting the week before last, I have found myself extremely tired after work. Like, I'm fine until I leave the office, but starting at that moment, all I can think about is taking a nap. And the 35-minute drive has seemed tedious for the first time since I started my job. It was one such day that I was driving down the highway and felt an incredibly strange sensation wash over me - it started as I-don't-know-what and ended as a panicked type of feeling. I pulled over, checked my blood sugar (which was a bit low but not enough to cause crazy symptoms), regrouped and then continued on. But what was it?

Since then, I have been getting feelings of panic from time to time throughout the day - especially when I am driving. It never escalates into a panic attack, more an underlying sense of unease or nervousness about my well being. I have noticed that it happens more often when I am tired. Afterward, I decided that I was doing too much, and that I needed to reprioritize: not work over my 5 hours per day; make sure I was getting enough rest at night and napping after work if needed; and really trying to exercise, if I had the energy.

Basically, it's how I get when it's time for IV antibiotics, only my lungs are doing great right now. I'm ready for the world to stop, or at least slow down, while I take a rest and then rejoin when I'm feeling up to it again.

My week of reprioritizing had mixed results. And let me tell you, it has been really hard to slow down. Almost like I am addicted to stress or busy-ness - how un-yogic is that! Anyway, I did manage to get more rest (napped every day after work - very unlike a healthy me) and worked less, but my anxiety has continued, and my sleeping seems (while I don't allow it) to be somewhat insatiable.

So what's going on? Yes, life is busier than usual and I have personal and family health issues I've been dealing with. But I feel like with my dad having been sick, and the pending decision about gallbladder surgery, my body is just now catching up to the emotions I've been going through for the last month...and it's not handling it well. I've also found myself feeling depressed.

I wonder if it's time to talk to a councilor - or even begin a spurt on an antidepressant (while I dislike the idea in general, I also used it before to get through a tough time in my life.) And I also wonder, if something has to give, what is it?

I know one thing for sure: I can't go on like this. And if I do end up going through gallbladder surgery, I want to have all of this unusual emotional stuff as sorted out as possible.

My goal for next week is basically the same - I'll let you know how it goes.