OCD at its finest...

I am in control of everything...until I'm not...

I have always known that I'm a bit Obsessive-Compulsive. It's actually one of my finer qualities. I don't often forget things, because they are constantly spinning around in my head. This has never been a major problem. You won't see me washing my hands raw or returning to my house 14 times to ensure that they stove is turned off. However, the annoying thoughts are there. I see them get worse during times when I have little control over my environment.

We went on a mini vacation this week. We drove down to Cincinnati and went to King's Island Amusement Park for a few days. A great time was had by all!!

















Yet, ever since I cultured mycobacterium I have been having thoughts (obsessions) about germs. I have no issue whatsoever with germs in my own home. However, spending several days at an amusement park and hotel just made those thoughts overflow... Hotels are the worst. I will never let my feet touch a hotel room or shower floor. Forget about the remote control...who knows where that thing has been. I have to mentally block out the whole pillow/comforter situation, or I would never be able to get any sleep. The shower curtain is right up there with the remote. If that thing brushes my arm while I'm showering that's another 15 minutes of scrubbing that arm. Then we head to the amusement park. The railings, the safety harnesses...everything is infested with little kid bacteria. It's times like these where I wish everything with germs I needed to avoid would glow red, like in the Lysol commercial. I think the worst thing of all that made me almost panic was the pens I had to use to sign receipts. I have been trying to bring my own pens everywhere I go lately, but I only put what I could fit in my pockets to the park. A pen didn't make the cut. Next time I'm thinking of leaving some cash behind to make room for a pen.

So I noticed these things more during this trip, likely because I have been sick and am worried about what I will catch next. I'm frustrated that I caught this nasty mycobacterium and I haven't a clue where it came from. A normal, healthy person can't even catch these bugs that I have and that I'm susceptible to. I've heard that one of the side effects of some of the drugs I may be taking to treat my mycobacterium is that they can make you dangerously immuno-compromised. I'm thinking I may just have to quarantine myself in my house for the next year. OR I have to get a life and stop worrying so much!

I'm in BIG Trouble!

Note to self...you need to learn to keep your mouth shut! My husband tells me all the time that I need to try not to make people upset who cook our food and know where we live. He's a police officer, so I'm sure he's seen his share of people retaliating. I, on the other hand, always think telling people how it is in a nice way is what's called a "teachable" moment.

So a couple weeks ago a guy came to our door offering to cut our half-dead tree in our front yard down for a very reasonable price. My husband said he would talk to me about it and that he should come back. The next day the guy came back to the door, cigarette in hand, asking if we made up our mind. He had no problem blowing smoke in my face, on MY front porch. He was talking about the tree and waving that nasty smoking stick around in the air. I told him I wasn't interested right now and kept my mouth shut about the cigarette.

The tree guy just came back a few minutes ago. He asked if we had made our decision. I said that we had decided we would look into another company. He said "but I could get it out of there right now and take it with me today". I told him that, actually, we decided on another company after he came to our door smoking. He apologized profusely and said he has been "trying not to do that". I told him that I had a lung disease and breathing clean air is not a choice, but a necessity for me. I kindly told him that it offended me that he thought it was appropriate to smoke on my dwelling. He apologized again and off he went.

As soon as I shut the door I started kicking myself. I have NEVER, ever been able to get through to a smoker by sharing my story. I think I probably look too well on the outside and their addiction is probably too strong to REALLY hear what they already know. Even with some family members, I have never been able to create a "teachable moment" when it comes to smoking. It gets me angry that people born with healthy lungs would make a choice to destroy them. It angers me that those lungs will not be available for future transplants for me or any of my hundreds of friends with CF who could someday use them for a second chance at life. Although there is some controversy about this issue, it frustrates me that sometimes smokers lungs are transplanted, and this could be a factor in a post-transplant patients death. Something similar to this happened a couple months ago in the UK.

http://abcnews.go.com/Health/Wellness/transplant-patient-dies-receiving-smokers-lungs/story?id=10920607

I am very much in support of people having rights. I believe people have the right to smoke. I wish they didn't, but they have the right. However, I have rights too. I have the right to answer my door without a huge plume of smoke entering my breathing space. I have the right to enjoy dinner out with my family without having to breathe in someones polluted exhale. Thank goodness smoking in public buildings was outlawed in Ohio years ago! I truly think that people who smoke should be mindful of the consequences to others and be considerate when finding a place to smoke.

I feel like I need everyone to know that if anything happens to me, tell the cops to look for the tree guy...ha!!! The tree guy with two missing front-teeth did it ;-)

Disappointments...

I was taught the principles of the "American Dream" early in life, and I believed in the theory whole-heartedly. If you work hard and do the right thing, you will reap rewards. So I worked hard and did the right thing. Over the past couple of years, and especially in the past month, I have learned that this doesn't apply to Cystic Fibrosis. Sure, being compliant and practicing self-care can, at times, have a positive impact on health outcomes. However, you can also follow all of the rules and your disease can still progress.

I finished my IV's a nearly two weeks ago after having an allergic reaction. I thought I felt better, so the choice was made that I could end this course of IV's after 2 weeks. The first disappoint was that my PFT's did not improve, not even by one percentage point. OK, I can deal with this. Frustrating, yes...but I know this isn't uncommon. I was really hoping, though, that all of my hard work would have paid off in a tangible way. I wanted to see improvement, instead of only feeling it. I wanted hard proof. It wasn't to be had during this appointment. So I rested on the fact that I felt good. My cough diminished and I was no longer short of breathe when climbing a flight of stairs. I also learned a lesson, that I will always go the extra mile and do a third week of IV's.

Much to my dismay, I started getting junky again within 6 days. By this last Wednesday I was having a full-on lung exacerbation. I felt worse than I felt before starting the IV's. For about 4 days I tried to convince myself that this was a normal part of the IV process...feeling worse before feeling better. However, each day was worse than the one before. This past Wednesday I finally called my nurse who said that it sounds like some residual infection was left behind and was rearing it's ugly head again. Disappointment is not a strong enough word to describe how I felt when my lungs decided to fail me so soon after working so hard to improve them. I did everything right, I did what I was told, and I didn't reap any reward...

Back on antibiotics I went. This time just oral Doxycycline. No big deal, really. It's only a bummer, because Doxy and I don't agree when sun exposure is involved. We have a little family vacation planned for this upcoming week, along with a bigger family vacation in 3 weeks. All involve lots of fun in the sun. I bought SPF 100 and am going to keep my fingers crossed. I am already improving vastly. Doxy always works wonders on my lungs. I just always decline right after I go off. Maybe this time the combination of IV's and Doxy will do the trick. I'm hopeful...

Mycobacterium is my next battle to fight. My sample was sent to Murray in Texas last week. I guess my local hospital had to watch the sample for the first 3 weeks to ensure that nothing else grew. The good news is that other than the mycobacterium and staph, it was clear. Now Murray is going to watch the growth for the next 3 weeks, he's figure out my strain and come up with a treatment plan. The treatment plan will likely include 3 antibiotics for about a year. I've heard of it taking both shorter and much longer periods of time for people to eradicate this bug, so I guess we'll see.

This mycobacterium has been another huge disappointment. It may be what has been causing this decline over the past couple years. I am obsessing about how I got it. I travel so much for work, maybe I got it on a plane. I have worked for years with cancer patients, maybe I got it from one of them. That leads to obsessing about how to prevent future exposure to deadly bugs. Should I wear gloves and a mask to clinic visits? Should I start wearing a mask on all of my flights? These thoughts have been floating around and around in my head for days.

The mycobacterium also acted as a reality-check. What jumped off of the page at me when I researched this bug is that only people who are immunocompromised contract it. I guess this means I'm immunocompromised. I mean, I knew I was immunocompromised...but I guess I really KNOW I'm immunocompromised now. There's no ignoring it now. It's frustrating that I can do everything right and I won't be able to change the fact that I have a genetic abnormality that will continue to make me sick. Then, when I get sick, I will likely always need strong medications to get to some level of well. Until I don't...

I guess I would say that June has been disappointing. Not unbearable...just frustrating.

Birthing Jake 4 Years Ago Today!

Guess who's 4 years old today? That's right, my little sweet pea, Jacob! We celebrated with family on Saturday and I've been stepping on Lego's ever since. Those little things hurt...

I had a very easy pregnancy and birth experience with my first child, Emma. The pregnancy with Jake was great, but the birth was a bit more challenging...after 40 hours of labor. You heard right, 40 hours of labor! I was induced 10 days early, as I was with Emma, because my lungs were getting too crowded. I was admitted into the hospital at midnight the morning of July 21st and the induction process started. About an hour after I arrive a bright yellow "Precautions" sign was placed on my door and nurses started gearing up in space suits just to see me. To my surprise they said that I had MRSA. How did that happen? I hadn't gotten a cultured for about 4 months. Well, I guess I cultured MRSA the last time I was seen by my CF doctor, but they never told me. Huh? It was explained that it could have been a false positive, so they recultured me. The problem being that it would take at least 3 days for the culture results to come back and by that time I would be long gone from the hospital. So they had to take all of the MRSA precautions for this birth.

I started contracting very soon after the initial induction process. I was rearing to go, but there was no birthing room available for me. I spent about 24 hours laboring in a regular room, until I was moved to a birthing room. I was RARELY visited, I'm certain because of how much time and effort it took for them to suit up before popping in. Finally, the time was near. I was ready to push. Wouldn't you know, that little bugger just wanted to keep holding on. Two and a half hours of pushing later, I had a PERFECT little baby boy.

It was exhilarating, but I was exhausted. I ran a marathon in 2002 and this labor experience was 10x more challenging. After about an hour of snuggling I was more than ready for them to take my little bundle of joy to the nursery so I could get some much needed zzz's. Whoa, was I surprised to find out that my little guy was now considered a MRSA patient, so he was not allowed to go to the nursery with all of the "normal" babies. Seriously! I wanted to cry...but I did it with the help of my hubby and family.

Discharge time was nearing and my son hadn't been circumcised. I had been asking about it every 10 minutes since Jake was born. Nobody had to guts to tell me that since my baby couldn't leave the room, they couldn't circumcise him. What?!?!?! They wanted me to bring him back at a later date to do it. That just was not happening. So I pulled out all the stops...I turned on the water works. I cried and cried... *whimper* "I can't possibly..." *sob* "...bring my son back when he's even older..." *sniff* ...to get circumcised...and I've been treated like a freak...and..." *whimper* "...this has just been so hard!" *sob*. It worked! The doctor whisked my son away, did the deed, and brought him back within 15 minutes. She did a great job too, I must say ;-)

All of this just to find out that my latest culture showed no evidence of MRSA. I either got rid of it on my own or is was a false positive. I've not cultured it since.

After having a step-daughter who thinks her father walks on water and having a daughter who has always been a "daddy's girl", I finally have a little boy who loves nothing more than to kiss, hug, hold, snuggle and love me!

Here are 4 things I've learned from Jake in the past 4 years:

1) I learned who Jar Jar Binx is and that we tend to find him annoying...

2) I learned that boys of ALL ages are intrigued by their privates!

3) Jake has Asthma and severe food allergies. Seeing him struggle to breathe and rushing him to the ER during his worst attack gave me a glimpse of what it must have been like to be my mother, or any mother parenting a child with CF. I learned that it's really hard...

4) I learned that "Mama's Boy's" really do exist and they are WONDERFUL!

Happy Birthday to My Dearest, Jake!

Spirits, Sightings & Signs from Beyond

Last week I posted on my FB status that I was looking for some blog inspiration. I asked for suggestions on topics to write about. As a result of this status update I got this Formspring anonymous question:

"Have you ever seen a ghost?"

I KNOW one of my close friends who knows me well must have asked this question, wanting me to share some of my experiences in this area. Be prepared! After reading this post you will either think that I had a very special experience, or you will think I'm a huge wacko...

The short answer to the question is "yes". The long answer is that I think that after someone has lost a loved one, they often experience signs, sightings or visions that are unexplained. These signs often provide a lot of comfort to the grieving person. I feel very privileged to share that I have experienced one such sighting, many years ago.

I was 14 years old, a new Freshman in High School, when my great-grandmother from Atlantic City, New Jersey was diagnosed with terminal lung cancer. She had no one to care for her, so she moved in with my mother, brother and I in Cleveland. We cared for her, along with a Hospice team. My great-grandmother was not a spiritual or religious person. I don't believe that she had any expectations about what the after-life was like...most likely she didn't believe in an after-life at all. Several special things happened during my great-grandmothers 6 months with us.

One day after school I went to ask my great-grandmother what she wanted to eat for dinner. As soon as I entered the doorway to her room, she asked me who the two little people were standing next to me. Without the slightest pause, I responded that they were my guardian angels. I have no idea where that response came from? I continued to get my great-grandmothers dinner order and went along on my merry way. Oh, how I wish this many years later that I could have that moment back. Who, after all, has someone get a glimpse of their guardian angels. THAT only happens in the movies, right? If I could go back I would ask more questions. What did they look like? Did they have anything to say? My great-grandmother also talked to her dead husband all of the time. He resided in her TV stand...really. She had long and very interesting conversations with him. After one of these conversations she had us write a date on a piece of paper. After her death we found the piece of paper in her room. The date she had us write down,months in advance, ended up being the date she died...

All of these things were experiences of a woman who was dealing with cancer that had moved to her brain. She was also heavily medicated. Therefore, all of these sightings and signs can be passed off as hallucinations or stress on her brain. Maybe there is a physiological explanation, similar to the medical explanation given when people have near-death experiences who see the "white light". I have heard scientists pass this off as a biological reaction to a lack of oxygen in the brain. So here's what I think. I think my great-grandmother was preparing for death. I like to think that she was given a little bit of access to whatever was on the other side. This explanation gives me comfort, so I'm going to go with it.

Several months after my great-grandmother died we had moved to a new house. I was having a very difficult time adjusting to high school, dealing with my great-grandmothers death and dealing with my own health issues. One night I was sleeping soundly. All of a sudden I started hearing whispers. I opened my eyes and looked over toward my vanity, where I heard the whispers coming from. Sitting on my vanity chair was a black "shadow figure". It was looking in the mirror. When I looked, it's head turned toward me. I still could see no face, nothing identifying. My heart was pounding. I tried to scream, but I was paralyzed. My voice would not work, I could not move. I was really scared and really struggling. The figure very slowly stood up and started walking in place. It then disappeared into the vanity mirror. Just like that, it was gone. I continued to struggle for a few more minutes, until I shot straight up and gasped for air. I felt awake the entire time. I had never experienced a "dream" quite like this... I knew this was my great-grandmother. Too scared to get out of bed, I instead prayed, probably for hours, until I fell back to sleep.


I got up for school the next day with a new little secret. I finally told my friend Lisa a few years later and I was actually surprised by her lack of judgement. In graduate school for Social Work I took a class called "Death & Dying" where I started to hear about these types of sightings and signs being well documented in literature. I read a book called "Final Gifts", written by two hospice nurses, that spoke of instance after instance of similar sightings/visions to my own. This started to normalize my personal experience. From time-to-time I would share of this experience when in private conversation with close friends. If only I had known that these things happen more than I would have ever imagined. Here are some examples that have been shared with me by those close to me...

• My mother got a prank phone call in the middle of the night one day. She answered, nobody was there, she looked at the clock, then she went back to sleep. When she woke up she was informed that her father had never woken up that morning...he had died of a massive heart attack during the night. It was very sudden and he died instantly. The autopsy showed that he died very near the time that she received the prank call. Maybe a coincidence? However, we like to interpret it as her father calling to bid farewell.
  
• My friend Josh's sister died when he was 16 years old. He shared with me that he had a very similar "dream/sighting" of his sister. To this day, Josh still feels Angie's presence very often!


• My friend Julie experienced the death of a close relative. Over drinks one night recently we began discussing the movie "Paranormal Activity". A little tipsy, I let down my guard and shared a little bit about my experience with the paranormal, only to have Julie say that she had the exact same type of vision! We compared details. It was amazing how similar our experiences were...from the paralyzed feeling to the inability to speak. It was fabulous to know that I was not alone, even within my circle of friends.
  
• I have a friend in my neighborhood who had a high school friend commit suicide, while they were still in high school. This friend was a jokester...always pulling pranks and being silly. Soon after his death she had a vision/sighting where she woke up from her sleep to see and feel him jumping on the end of her bed. Of course, being as silly as he was in life, it was no surprise that he found a humorous way to reconnect after death.
  
• Finally, little Conner Jones, age 7, died almost a month ago from CF. Read this beautiful blog post about the sign Sarah Jones received from little Conner last week: http://notsobrightandshiny.blogspot.com/2010/07/he-is-here.html
  

Are we all crazy? I don't think so. Were/are we all grieving? Absolutely. Could these experiences be our attempt to cope with the loss? Yes. Could grieving cause a biological change in our brains that made us "hallucinate"? Possibly. However, I tend to think that my sighting and signs, and those of my family and friends, were real. I think that we were connected to these souls in a way that allowed them to "communicate" with us even after death. If you've never had this type of experience, I'm sure you think I need some psychological help right about now. I completely understand! Yet, I feel blessed to have had this "sighting". For years I have prayed for my great-grandmother to come back for another very welcome visit. This time I wouldn't be frightened and I would collect myself enough to try to ask all of the important questions. Apparently, it doesn't work that way...

Mutations, Uncertainty & Aging

I am a Type A personality. Most of the time it works for me, but I think in my CF world it works very much against me. I see things in black and white. Things are either all good or all bad. The gray area is extremely uncomfortable. I do not sit idly by, or go with the flow. It's not in my personality...it's not who I am. It is often seen as my biggest flaw. I am fully aware.

My gene mutation/combination is Delta F508 and R117H. "Dr. Bob" has told me on numerous occasions that the "R" mutations are very unpredictable. He can't really give me stats, because everyone with this mutation presents completely differently. I like my stats! CF stats have been ever-changing since my diagnosis. I am fully aware that stats don't mean much to each persons individual case, but I like to know my odds. Should I take the over or under? Should I put my money on red or black? The only true stat I have to go on currently is that 50% of people with CF will live to see 37.4 years of age. Does that mean I have a 50% chance of being alive 2 years, 5 months and 7 days from now (I'm not sure my math is correct...I'm just a Social Worker)? What happens after that 37.4 mark? That fact is that NOBODY can answer this question for me individually. Nobody has this answer. Ugh...there's that uncertainty thing again!

The CF world is so interesting. Most of us have a habit of introducing ourselves with our name and age. I'm known as, Stacey~ 34 yo w/cf. Nobody does that in the real world. For those with CF, our age is extremely significant. The honest truth is that I'm an aging CFer. I am completely honored to be an "old" patient...to have reached an age where non-CF people think my story is inspiring for the simple fact that I will be turning 35. When the average person says to me that I'm still so young, I think in my head that they have no idea. I wonder what they would think if they knew that I have made a conscious effort to keep all of my assets liquid and not contribute additional earnings toward my 401K. My financial guy urges me to think of the future, that 30 years from now I'm going to need this money to maintain my lifestyle. Huh, I guess I've gone with the under when it comes to finances. There's that uncertainty thing again...

I completely realize that nobody is guaranteed tomorrow. I am completely appreciative that I have been able to live to (almost) 35. I am hopeful! Anyone who knows me in my "real" life knows that I am positive. I ALWAYS try to look on the bright side...I ALWAYS try to put things into perspective, if not immediately, then eventually. So is it possible to be hopeful, but realistic? Is it OK that I sometimes feel uncertain and frightened, while mostly being positive and thankful? If so, than I am. I think I lived happily in denial for many years...but that's over. This is a process. Some days are better than others. I think it's much easier to be positive and happy when your body is cooperating. I haven't yet mastered how to keep this feeling going every moment that my body is failing me. I have learned that I need the yucky days, to help make the great one's even more meaningful.

I have had a couple of really crappy days over the past few weeks, with some amazing days mixed in. That is what has inspired this post about uncertainty. So now I'm going to complain. Here's where you can tune out it you don't want to listen to me whine... Last night we realized after 2 weeks on IV Nafcillin that I'm allergic. I had a delayed allergic reaction, 2 full weeks after starting the drug. I felt like I had the flu 10x over. I haven't been quite that sick in a long time. My lungs felt great! Everything else hurt... So I had to quit. I am a quitter. I could only make it through 2 weeks with this poison dripping into my veins, until my broken body couldn't handle it anymore. Now I'm allergic to all sulfa drugs, along with Penicillin's and I am becoming resistant to Keflex. Gotta cancel out all of those options... On top of that I now most likely have C. Diff and am on Flagyl. Flagyl in and of itself can be cruel, but C.Diff is worse. I was hospitalized for a week in 2000 for C.Diff and it sucked. I'm susceptible every time I am on IV's or long-term antibiotics, due to my history with it. Thanks goodness we caught it early this time. I am still waiting for my mycobacterium culture results, which may take weeks if not months to process. That's just the nature of that bug. I KNOW it could be much worse. I've been reading the blogs of my transplant friends and the struggles they have been faced with just recently. The crap that I've had to deal with over the past few weeks it absolutely nothing compared to their experiences. For what it's worth, though, I think this CF stuff SUCKS! Whew...that felt good!

So now I'm moving right along... Now, I'm going to flip the switch and bring it back to the moment. I am going to try to forget that I was writhing in pain during this allergic reaction last night and I am going to try to focus less on the gray area, that being the future. Today is today! Today I feel much better!

My (un)Scientific Study

I have been on my IV's for about 2 weeks now. I love the freedom of being able to administer my IV medications at home. It's not an option for everyone, so I am thankful that I have been able to take this path. I must say, the most fun part of this whole experience for me has been doing my own little experiment in human behavior.

I am fortunate enough to live right between a Target and a Walmart. They are both within walking distance. I have to admit that I am a Target girl all the way! No offense to all of you Walmart peeps out there. Target just feels a little like home. Maybe I've just become hypnotized by the logo...

I have a couple of rules I follow when shopping at Target and Walmart. For Target, I never wear a red shirt. This causes major confusion for everyone involved. I don't know how many times I have asked a random shopper in a red shirt for help. Walmart is a bit different. I can be colorful, but I must remember to wear day time clothes, that are not ill-fitting and that cover all of the appropriate parts. If not, I risk becoming one of the "People of Walmart" from the now famous website.

I have been to Target 3 times this past week and a half (yes, I go that often). I was not infusing my medication during any of these trips, so my IV lines were neatly wrapped up in a coban bandage. You can still see what's going on in there, but it's not quite as obvious as it would be if I had the medication hooked up. During each of the trips I got a few people who stared, a couple who whispered to the person they were with, a few of the cocked head and puppy dog eyes and one very frightened little girl who looked at my arm then backed away slowly until she reached the security of her mothers side. My favorite is when a person is staring and when you look their way they quickly try to look at something else. I really don't mind at all. I would stare and wonder too.

I needed Lego's for my son, who's turning 4 in a couple weeks. I've learned that when you need toys, Walmart is the way to go. WAY cheaper and much better selection. I had a few minutes one evening after dinner, but I was in the middle of infusing my meds. Off to Walmart I went anyway. I had no bandage over my line, my tubes were dangling and I was holding the medication dispenser in my hand. I walked in expecting the type of reaction I got from the Target customers, but instead I got NO reaction. Not one person seemed to notice. I walked in, loaded up on cheap Lego's, walked out and did not get a second glance or scare any children. Maybe everyone was so mesmerized by the roll-back prices? Maybe they were too busy seeking out wardrobe malfunctions?

I found that the differences here were very obvious. I'm kinda concluding that the "People of Walmart" are a bit more accepting or apathetic about differences. Keep in mind that I'm saying this as a Target girl, myself. Hmmm! It just made me think...