Autumn Nervousness

It would appear that Fall has arrived. The Autumnal Equinox occurred at precisely 4:51am on 09/23. Of course, I really don't know what that means. I thought an Equinox was a car made by a currently striking American automaker. Well, my friend Joe, who is a meteorologist, explained that the Autumnal Equinox "is one of two times of the year when the sun crosses the equator, and the day and night are of approximately equal length." OK, that is cool. It is also cool outside! This morning when I went to work we had already hit our high of 75 degrees. By the time I came home from class tonight it was 59 and falling. Regardless of the temperature and the shortness of the day, I love Fall. I do. It is my favorite season hands down. I like the crisp air, the soft ground, and the bright color of the trees. With Fall I'm reminded that it is time for nature to take a long winter nap, and begin the renewal process.
Perhaps it is time for my own renewal process. Perhaps it is time for me to begin healing.

Tomorrow, I begin my journey. I will undergo testing so that my pulmonologist can figure out how best to treat this disease that is making it difficult for me to breathe. Tomorrow is the chest CT scan, and the echo cardiogram. I won't have the results back for a couple of weeks when I meet with my doctor again. It is going to be a long day, and not very enjoyable, but I will be a cooperative patient; as always. I'm a little nervous although I have been through this all before. The processes are all too familiar. I know what pain to expect. I know that when I'm finished, I will feel like I have been through a fight. I know that I will also feel relief. Relieved that this step is over, that I can look ahead to the next step, and that I can hope for the future.

Time for "Us"

This was such a beautiful day. There is no other way to put it - beautiful is the best description. The temperature was in the upper 70s, there was a nice breeze, and lots of sunshine. Tyler and MacKenzie were off to their dad's for the weekend, so it was just Larry and I. We got up early and went to church, and afterward, Larry suggested that we take my new car out for a little road trip. I can't remember the last time that he and I just got away for an afternoon together.



We drove to Dyersville for lunch at the Country Junction restaurant, which incidently, has the best pie in the entire world! Then we headed to Dubuque to visit the Arboretum. They have a beautiful botanical garden there, and with Larry being a horticulturist, he was in his element. It was apparent that the plants had sustained some early frost damage, but many plants were still blooming. The bees and the butterflies were getting one last sip of nectar before fall days and frosty nights settle in. They have done a lot of work there at the Arboretum. It's hard to believe that it is all done by volunteers. There was even a lady out there today weeding the expansive Hosta beds. She greeted us with a friendly, "Hello! Beautiful day, isn't it?" as we walked by on the trail. I was armed with my digital camera, snapping photos along the way. I'm no Ansel Adams, but I do like to take pictures. One of the new features at the park is a large lagoon filled with Koi. Some of them were the size of a small school bus, and when they saw people at the edge of the water, they would swarm there thinking that food was coming. I imagine that they have been conditioned to that behavior. The Arboretum grounds are slightly rolling, and there are a few steep hills which were a little challenging. We walked through what was left of the Dahlia beds, the Canna Lilies, and the wildflowers. Some of them still hanging on to their blooms, and some even have yet to open. Lastly, passing the rose garden, I saw a peach colored rose. It was brilliant in color, and looked as though it had recently opened to its peak. The rest of the blooms on the plant were dried up already, and the plant was nearly ready for hibernation. Not this bloom though. It was still green around the stem, and the petals were still soft and strong. This rose had yet to succumb to the forces that nature had in mind for it, and it was not ready to give up its one last bloom. As I stood there looking at it and appreciating its beauty, I wondered; If God allows this rose bush to bloom in the fall of its life, then He can help me to make the most of mine.

Today in Bible Study, our pastor reminded me that Jesus said, "Come to me, all you who are weary and burdened, and I will give you rest." (Matthew 11:28).

I need to remember that. He will give me rest. He will take the burden of illness from me, and He will work this all for my good.

All of this remembered as I stood and stared at that peach colored rose.



On the way home, Larry drove, and I slept. Larry held my hand all the way home. He hasn't done that in ages.
Maybe he really does still love me after all.

A New Challenge

As if I didn't have enough to deal with.

In recent weeks and months, I have not felt like myself. I have been tired, dizzy sometimes, and just kind of "blah." Since it was beginning to interfere with my life, I decided to mention it to my pulmonologist as I had my yearly appointment scheduled anyway. He thought this would be a good time to do a pulmonary stress test to see how my pulmonary system (heart and lungs) react to exercise. I told you all about this before; Well, now I have a diagnosis...

I have Pulmonary Arterial Hypertension (PAH). It is a disease of the pulmonary arteries, where the pressure required for the heart to pump blood through them is strained due to a blockage or thickening of the arterial walls. The doctor is pretty sure that this is due to my past episodes of Pulmonary Emboli (blood clots) and more than likely, it is old clots that are taking up the space. I'm having an echo cardiogram (ultra sound) of my heart next week and a chest CT. These will measure the actual pressure level, help the doctor figure out what is causing the blockage and determine how much damage has already been done. There is no cure for PAH and it is progressive. I won't get any better. They can treat the symptoms as they occur with medication, and someday, I will probably have to have oxygen therapy. Right now, though, they are looking at just increasing my Coumadin dosage to thin my blood further and allow it to pass more easily through the arteries. I am limited in what I can do physically - nothing strenuous. I'm tired a lot. And since this news just came last week, I'm still dealing with it. I should have the final results of all my tests in about 3 weeks. So - I'll keep you in the loop as I know more.
If you would like more information on PAH, you can go to this link: http://www.mayoclinic.com/health/pulmonary-hypertension/DS00430/DSECTION=1 It has a lot of information.

I know that God will not give me more than I can handle and that He will use this for my good. I have to believe that. God is the only one who is going to get me through this - one way or the other.

My Brightest Bright Spots - My Friends

Today, I felt like I was moving in slow motion. I got quite a bit done at work, although it didn't feel that way. What was this slow motion-like feeling? Was I sad? A little. Was I depressed? Not really (and yes, there is a difference). I know what it was; I was lonely. I was needing my friend-my best friend.

Her name is Ami. She and I share the same interests, the same values, and even similar diseases. Isn't that funny? Who would have thought friendship could be found based on a medical condition? People tell me it happens all the time. Well, it is a first for me. Anyway, Ami and I both have a blood clotting disorder. I'm always harping on her to make sure she gets her blood work done and takes her medicine like she is supposed to, and she is always harping on me to take my own advice and believe her when she tells me that "everything is going to be ok." I love her because she understands me, and because she doesn't let me get away with anything. I don't know what I would do without her. She is one of the brightest bright spots in my life. We all have those people; the ones that can make us smile just by being in the same general vicinity. I'm fortunate to have several.



Take for instance, Karen. Karen is Amanda's mom. You remember her, right? Amanda is the one that Tyler is best friends with, that is in show choir with Ty and Mac, and goes to school with them? Well, Karen is my"life raft." She has always been there when I needed to cry...or laugh. She is there when I just want to hang out with someone, watch movies, or eat ice cream. I can completely be myself around her. I think sometimes, that she could have easily been my sister. She assures me that I'm not crazy, even when I'm feeling like I'm out of my mind. I love her because she gets what its about. She knows what it means to make sacrifices for the sake of the children, but she also knows that we moms need our time too.



Then there is Bob. We work together - well, not together, but in the same building. He is in a different department, on a different floor. Our communication is generally via email, or in a committee meeting, but he is easy to read and for that I'm grateful. Bob gives me permission to feel like I'm OK. He gives it to me straight, and whether I like it or not, "it" is the truth. Like today: I emailed him to see how he was feeling (he had broken his ribs a couple weekends ago doing stuff a man his age shouldn't be doing), and I thought I would bring him up to date on what was going on with me. He sent back the following message: "Keep me posted............ I know you didnt ask, but my recommendation is start walking EVERY day, take vitamin C, cut way back on sodium and saturated fats, drink TONS of water and get plenty of sleep. Doc Bob out ;-) " I love unsolicited advice. ;-) His emails make me smile, and I feel fortunate to have him as a friend...another bright spot.



With these three individuals at my side, I can't lose. I will never have to laugh alone, I will never have to cry alone, and I will never have to fight alone. They are my best friends, and although I don't tell them very often, I love them.



My Brightest Bright Spots.

No Improvement

The pulmonary function test I underwent yesterday was interesting. I was met in the pulmonary testing lab by Lori, a cheerful, yet sarcastic, middle-aged woman. She was obviously tired from a long day; her hospital lab jacket was unbuttoned, and the white shirt underneath stained from whatever it was she had for lunch. I found out, much to my delighted surprise, that Lori is a genius! Let me explain...

If you have never had a pulmonary function test, this just might interest you. If you have had the pleasure you can stop reading now. Still with me? OK. As with any testing at the hospital, paperwork must be done. "What medications do you take?" "What allergies do you have?" "What blood type is your first born child?" The formalities done, the fun begins.
"What wrist would you like me to use?" Lori asks as she wields a syringe with a 2 inch needle attached to the end.
"What wrist?" I ask apprehensively. I knew what was coming next.
"For the blood gas I have to do. It has to be arterial blood so we draw it from the..."
"Yes, I know where it has to come from. I am a real chicken about this, so I have to ask...how long have you been doing this?" My face must have been ashen. Lori looked at me calmly and said, "24 years. Is that OK?" She smiled and immediately put me at ease. I extended my left hand to her, and she placed it with the inside of my wrist facing up, on the table. I looked away, not having the heart to watch this procedure. I barely felt the needle go in, and I didn't feel her puncture the artery. I looked to my arm and saw the blood, very dark red, slowly filling the syringe. "How did you do that?" I asked her.
"Very slowly," she said. I proceeded to tell her about previous blood gas procedures I had endured where the lab tech, or the nurse, jabbed the needle in and then had to dig for the artery before finally getting the sample they needed. This always left me bruised and full of anxiety. She shook her head and proceeded to explain that the only way to do this blood test was slowly and deliberately to minimize the pain. "Not everything needs to be done quickly, even in the ER," she said. Lori was now my best friend.
Next came the prep work for the test itself. I changed into sweatpants, while Lori gathered the supplies she was going to need to "hook" me up to the computer. I couldn't help but laugh to myself at the thought of me hardwired to some kind of monster computer like out of a sci-fi novel. My bare chest, neck, shoulders and forehead (yes, my forehead) had to be cleaned off with alcohol. Adhesive patches with electrodes attached to the places that had been cleaned...11 in all. Wires seemed to be sprouting from all over me. Just as I was wondering how we were going to keep all of these things on, Lori appeared with a piece of mesh. It was stretchy, like elastic, but soft like gauze dressing. It was in the form of a tube, and she said that she was going to put it over my head. I'm thinking, yeah right you are. You are NEVER going to get that thing over my head and around me. But, she did. She cut holes for my arms to slip through, and frankly, I thought it looked pretty attractive. Over that, was a blue scrub shirt -- now this was great! I love the soft cotton they are made of, and the loose fit was very comfortable. Now, we just had to wait for the doctor to come in.
About 15 minutes later, in walks Dr. C., my pulmonologist. This is the man who treats me for the blood clotting disorder that I suffer from. He, too, looked like he'd had a long, difficult day, but he was still as personable as always. I climbed on the bike (stationary, of course) and Lori hooked me up to the computer. She slipped a white cotton headband over my forehead to hold the electrode in place that would measure the oxygen in my blood. The "Darth Vader" mask was next; a blue neoprene/sponge mask with a breathing tube attached to the front. This covered my nose and mouth, allowed me not only to breathe but to talk, swallow, etc., which was quite comforting. I was dreading having a tube shoved down my throat, drooling and gagging as I pedaled my way into the medical journals. The test began and I pedaled...keeping it at 60 rpms or above...the tension slowly but constantly increasing...5 minutes...6 minutes...Lori checks my blood pressure...8 minutes...10 minutes..."Give me another minute and a half, Cara," cheers Dr. C...12 minutes...Lori checks my blood pressure again...14 minutes...Hello! I'm dying here!...15 minutes...STOP! Lori runs another blood gas. This time I'm so exhausted, I don't notice that she uses the same hole as before. Dr. C. is reading over the information that the computer was spitting out at him. I'm breathing heavily, sweating, but all in all, feeling pretty good. At least, I didn't pass out. Dr. C tells me then that he let me go an extra 4 minutes longer than most because I was "doing so well." Sadist. As Lori gets me unhooked, removes the mask and the headband, Dr. C. comes over to me and says, ever so gently, "You did great. Your oxygen/CO2 transfer was good. I'm concerned that lactic acid built up in your leg muscles very quickly, which isn't quite what we would like to see. Also, your EKG is abnormal." Abnormal? He said, my EKG was "abnormal." He continued to explain that compared with the EKG I had done last year, that there had been significant changes. He is suspecting Pulmonary Arterial Hypertension. What the hell is that? He said that he would order an ultrasound of my heart to look at it further, and then we would talk more about it when I came in to see him on the 20th. Interestingly enough, my mind kept drifting back to that disturbing statement, "...your EKG is abnormal." What does that MEAN exactly? Of course by the time I decided I wanted to ask, he was already gone, and it was just me and Lori. The wires were removed, I unstuck the adhesive patches, and changed into a clean T-Shirt I'd brought along. Two hours from my arrival at the testing center, I walked out of the hospital, knowing only that there was something wrong with my heart.
Thankfully, I had class to divert my thoughts for a little while. There is nothing better than a writing course, taught by a bespectacled, salt and pepper-haired, semi-good looking professor (who is a little obsessive about correct grammar) to take one's mind off of one's abnormal EKG. I found out that I received an A on one assignment and a B+ on the other (I think). Not bad. We laughed as we studied the grammar snafus of previous students, which was a good way to lighten the load on my mind. Then, Professor B. said that he was going to let us out an hour early. Damn. I wasn't ready to face real life yet. Leaving meant going home and fielding questions from my family about my test at the hospital. I wasn't ready to talk about it. If I talked about it out loud, then it would become true. Still, I couldn't stay at school.
At home, Tyler asked me about the test almost right away. We went downstairs to my office, I began explaining what they did to me, and we looked up Pulmonary Hypertension on the computer. The Mayo Clinic has good information, as does the American Heart Association and the Pulmonary Hypertension Association. What I learned was that there is no cure, the symptoms are treatable by nasty medications with horrid side effects, and that it is almost always fatal. I'm not ready to deal with this. Especially since we don't know for sure if that is the problem. I'll have to wait. I have 8 days to think about it, worry about it, panic over it. I called my mother and told her about my test and the abnormal EKG. I shouldn't have called her until I knew more. Now, I have her all worried about it.

I'm going to hope that whatever is causing my symptoms has a name. I'm going to hope that it can be treated. I'm going to hope that I get to see my children grow up, get married, and give me grandchildren. I'm going to hope.

Stress? What Stress?

Stress can take numerous forms. It can be positive or negative, healthy or unhealthy. Stress can come from a number of people or places; work, home, the boss, friends, family, pets, etc. Some would say that moms are experts in the fields of stress management...

If that is true - I WANT THEM TO TELL ME THEIR SECRETS!!!

I'm going crazy. There, I've said it. It is now official. I am completely and totally out of my mind. Kids I can handle. Going back to school, is do-able. I truly do love my job. My husband is a decent enough guy that is easy to live with. Why is it then, when combined, the preceding put me at the end of my proverbial rope?

Kids: Yes, they are back to school and learning lots of new things. Mac is earning straight As already and adjusting fabulously. Tyler, in 8th grade and at the end of his middle school career, has fallen back into the old habit of doing his homework but not turning it in? His teachers are helpful - full of suggestions for getting him organized. Evidently, they do not understand my son. I could go on and on about the challenges of having an ADHD child. Some of you would take the role of the skeptic, saying that he isn't ADHD, it's just an excuse for laziness. Others of you would be empathetic to the situation. I need to work with him more - that is a virtual certainty. But - when?

College: When I went back to school in the fall of 2003, people asked me how I would fit it all in. My response was, "It will just fit." I was right about that. School crammed its way into my life and the consequences have been late nights (like this one), less sleep, but yes, growth and knowledge. I wouldn't change a thing. There is now light at the end of the tunnel with graduation just within reach. Spring of 2009 is my goal; and I WILL get there. I will wear my battle scars proudly, but I will get there.

Work: I said I love my job. I do. I can't imagine doing anything else right now. Keep in mind, that if I weren't typing, I would be making this statement through clenched teeth with my fingers crossed behind my back. Deep breaths, Cara, deep breaths.

Husband: God bless Larry. He puts up with more than he really should have to and I love him for it. I suppose I don't tell him enough. I have been so stressed out lately, that just about everything I say is dripping with sarcasm, and it is not directed at him personally. When I'm like this, I guess I just find fault with everything and everyone.

And then there is my health. I'm not 40 yet, but these days, I feel 60. What I wouldn't give to have the energy level of most 40 year-olds I know. To be out playing with my kids, fielding softballs with the church softball team, to be running, biking and hiking. I can't. Something is amiss with my pulmonary function. I'm having a pulmonary stress test tomorrow that will hopefully shed some light on the issue.

I'll keep you posted.

In the meantime, pray that I find resolution to my stress. Pray that I can truly give it up to God and let Him do the worrying. Right now, I find that most difficult.