Thursday, May 10, 2012

Heavy

Yesterday was a strange day. Things have been super busy around here, but something yesterday made me stop, think, and reflect. Yesterday I had a visit with my mom. My mom is in the severe stages of Alzheimer's Disease at only 71 years old.

Whenever I go to see my Mom, one of the things that is usually required is some reorganization of her room. She tends to take everything she has and put them in different spots. Tuesday, I found clothes in the trash, shoes in the drawer, books under the bed, pillows in the closet and so on. Some times I choose to leave things just the way that they are, knowing that if I left, the next day they would be a mess anyway. This time, I decided to straighten things. She wasn't in her room, instead out on a walk with one of the nurses, so it gave me time to do it without her around.

So, I straightened her room and got together all of her dirty clothes to take with me. I refolded and reorganized all of her clean clothes and put them in drawers. I picked up all of her books and replaced them on her book shelves. I found the three photos that she has of my sister, myself and our kids and placed them on the shelf. She has very few possessions at this point, so going through and doing this does not take a lot of time. I did notice that I could not find the necklace that my son had made her and she used to wear all of the time. This was a warning. Clothes in the trash and a necklace missing meant that the necklace that she once held dear was gone. Probably tossed in the trash, no longer knowing how proud my son was that he made it and she loved it so much. This was a warning to see if there was anything else that needed to be taken. Anything of any value.

She returned from her walk and we sat on the bed. She was hungry and was "trying" to eat an apple. I say "trying" because even to take a bite of it as a laborious and confusing situation for her. I sat and we talked. This meant that I listened to her talk. She spouted random sentences, mostly none of them making much sense. We had a nice visit, but then I had to go. I explained that I would be back tomorrow. I knew that this meant nothing to her as she would forget soon after the words left my mouth.

I showed up yesterday, Wednesday, thinking that the Mother's Tea was at 2 pm. I got there a bit early in order to unload her laundry and to make sure she recognized me. I saw right away that something was amiss. I asked and found out that the Tea was at 3 pm. I wanted to go, but it didn't matter much, because my Mom really had no idea that it was even happening. I wasn't going to be able to stay. I had to pick up my daughter by 3pm.

On to her room,and I saw her sitting on her bed looking at a book. She was once an avid reader, but now can not read anymore, so she instead looks at "coffee table" type books. She was looking at an art book...upside down. I greeted her happily, unloaded her laundry, rearranged her drawers again, and then sat with her to talk about the book.

She went into, what she thought was, great detail about the "book." I began to realize that she was somewhere in between knowing that this was a book and thinking that this was also some sort of album about her life. Stuck in a sort of limbo. She gave me reasons why this guy put this book together, the story about it and how she fit in to mix. Honestly, most of it was jibberish. Nonsense. I sat there nodding, agreeing, and trying to interject a comment that would let her know that I was enjoying her discussion.

Then suddenly she looks down and starts talking really softly, in order for no one else to hear but me. She says, in a low and annoyed tone, something like, "There are all these families that live here and this is my space, but these people are always here, just trying to be in my business." It was not even that coherent, but I responded, "Well, Ruth (her roommate) is sleeping on her bed." She says, "No," as her eyes "point" to something behind me. She whispers, "That lady standing right over there and that crazy guy. They are just staring at us." Creepy? Yes. I knew there was no one there, but still felt inclined to turn around and look. Was anyone there? I say no. She would say yes. Her hallucinations tell her there are people in her room all of the time. That was such an eerie feeling.

We finished looking at that book and she moved onto another. Again, caught in her world, almost a purgatory of sorts. Definitely not heaven, certainly closer to hell, but a world in between. Finally, I asked to see her hand and took her rings. I told her that I was going to have them cleaned, slipped them on my own hand, as not to lose them. By the time the rings were transferred, the thought was lost. She had moved on to something else. Almost the last thing of value was being taken. The only thing remaining of value is my Mom.

We soon said goodbye, I gave her a kiss and a hug and said that I would be back on Sunday, Mother's Day, to take her to breakfast. A quick glimmer of child-like excitement flashes across her face and fades as I walk out the door. The reality that I am now her mother and she, my child has hit me again.

I was telling my sister, Morgan, about the experience. We both described it as trying to talk with a person who was mentally ill...which I guess, at this point, she is. She absolutely has her own reality. It consists of a world that we are rarely part of. There are people that play parts that only she knows, that only she sees.

This was one of the days that I left very upset. I wanted to talk with someone. Someone who knew what I was going through. The three people I called, my husband, my sister, and a friend were all unavailable. Suddenly I felt so lonely. As if I had been totally encompassed by these emotions. I can only describe it as being left in a dark room, surrounded by nothing. Isolated with my feelings and realizing that no one really "gets" how it feels. No one to rescue you, to help get you out. Heavy. Heavy on my heart, on my entire body. No one to help bear the load.

Even those, like my sister, who are also going through this, do not have the same experience as me...do not deal with my Mom on a regular basis. Again alone. I had no one to talk to and had to somehow hold it together because I had to go get my daughter from school. Hold it together for hours. She was having a play date at our house. No way to release the pain.

I know that I have friends. I have an amazing family that is and always has been supportive. But yesterday, none of that mattered. Yesterday I felt totally and completely alone. Desperate for connection, yet realizing the connection I would get wouldn't suffice. Not today.


Friday, May 4, 2012

I Am Not Normal, Thank Goodness

Another day, another test. I finally got into a pulmonologist and once again, I seem to be passing their tests with flying colors. "Your chest x-ray is normal and your lungs really sound pretty good," says the doctor. My usually response is, "Well, I am not able to breath normally, so what now?" Off to get a CT Scan and a PFT (Pulmonary Function Test). These will be checking for lung scarring, a possible pulmonary embolism, or a fungal infection.

Today I arrived at St. Vincent's Hospital at 6:45am where a friend of mine awaited my arrival. She volunteered to come with me for support and another ear, in case we were told another bunch of medical mumbo jumbo...two sets of ears are better then one.

Registration was quick, since I had been there recently for my stress test. Then I was shuffled off to Radiology, which was right next to outpatient registration. The lady checking me in was completely annoyed that they did not give me an extra sheet that I needed to have to take to my PFT. Poor thing had to walk 10 feet to the copier and make a copy for me. My friend and I were laughing that with one facial gesture and roll of the eyes, we could hear the conversation in her head. "Of course they didn't give you that sheet. They never do. Now I have to walk all the way over here and make a copy."

Despite the disgruntled lady at the desk, everything else ran super smoothly. The hospital was actually completely on time, and I went right into the back. Here, I had to get an IV and was told what actually was going to happen during the CT Scan.

Needles do not bother me, so even when she warned that they would have to use a larger needle than usual, in order to inject the dye, it didn't phase me. IV in and we walk back to the room where the scan actual goes down. The nurse warns me, "When the dye is injected you may feel really warm and like you peed your pants, but that is normal." I laugh, make a comment like, "Awesome, can't wait for that sensation." I am given the instructions that I will hear directions overhead on when to hold my breath, open my mouth and breath normally in order to do the scan. Then out the room they scoot.


I am lying there on the bed, arms up over my head, as instructed, and wait. Just then, the machine turns on and it sounds like an airplane is taking off in the room. In my head I am thinking, "Just like I am going on vacation!" The dye has yet to be injected, but then her voice tells me from above, "We are injecting the dye. Here is where you may feel the effects that we talked about." I was thinking, "Sure, maybe some older women will feel like they are peeing their pants, but not me." Man, was I ever wrong. I could feel the dye spreading throughout my body, into each extremity, into my finger tips and yes, down "there." And I will admit, yes it TOTALLY feels like you are peeing your pants....luckily, I assure you, you are not. Not only did I feel like I was suddenly in need of new pants, but it made me feel like I was on fire, from the inside out. What a strange feeling. Like nothing I have ever felt. Aside from the weirdness of now feeling incontinent and on fire, it was quick and easy. The plane once again landed, as the machine was shutting down.  IV was unhooked, I hopped off the table and was off.

Out the door, my friend was saying, "What? You're done already?" I was and we were off weaving through the maze of hallways in order to find the Pulmonary Function Lab. (Link explains in more scientific detail what I went through.) There it was. This little room with a weird machine and an odd technician. I waited briefly as I was told, "You are early. I have to finish getting the machine ready." Once the machine and the technician were ready, I came in, got weighed, my height measured and was told to sit down. In all essence, this machine was very interesting. It uses Boyle's Law in order to calculate my airflow volume, lung pressure, and flow, as calculated for a "normal" person my height and weight.

This test basically consisted of me breathing into a "snorkle-like" tube over and over. I had to pant, give deep breaths and bursts of air, and breathe normally into this tube while I had nose clips on. Then I was given an albuterol breathing treatment. This made me so jittery, which she warned me about. The technician said, "This may make you feel like you drank too much coffee." I responded, "I don't drink coffee or anything else with caffeine." She says, "How about an energy drink?" Before I respond, I am thinking, "Isn't there a TON of caffeine in energy drinks? Genius." I simply state, "Nope, haven't had one of those either." Then the jitters set in. My entire body is shaking and I feel dizzy from the medicine, but guess what? We are not done, more breathing tests. Mind you, the entire time I am taking these tests, the obese technician is trying to tell me that maybe I have acid reflux. *Insert, in my brain, a major eye roll and the conversation and judgment that makes me think, "Yes, it must be acid reflux. Must be all of that McDonald's that I have not been eating and all of that Coke I have not been drinking.* More huffing and puffing into that tube and more comments that the reason I am coughing is not mucus or fluid being extracted from my lungs, but again, acid reflux. I could not wait to get out of there.


My friend and I leave, laughing and discussing my "acid reflux." Now, this is where I get frustrated and somewhat pissed. Supposedly, by the expert acid reflux technician, my breathing was fairly "normal." Here is what I want to know, what is "normal" to a pulmonologist? Is normal the guy in the wheelchair with oxygen and a pack of Marlboros in his pocket? Because if that is normal, I am so above normal it is not even funny.

I have said this over and over. I have never had trouble breathing until I got pneumonia. From the reactions of all the doctors I have seen since, it sounds like someone dropped the ball and I should have been hospitalized in November, when instead I was sitting on the couch for weeks. No blame, I am staying in the present. But since then, I have not been able to breathe normally. That means normally for me. For a 5'3" female that is in super shape. A woman who is strong. A mom that can CrossFit and run while feeling that I am breathing through a cheesecloth. Someone who has had her blood work taken--normal. Had a stress test--heart is "more than perfect." A woman who now can walk across a room and be out of breath and have physical pain in her lungs, but will still complete a WOD for the day. Someone who eats better, works out more than most people. Someone who has, literally, NEVER, and I mean NEVER smoked in her entire life. So tell me, am I wrong to think that what is normal for the typical obese, fast food eating American is not normal for me?

In a couple of weeks I will go in for my followup and get the results of my tests. I will admit that I am feeling somewhat better. I don't feel like I can't catch a deep breath all of the time. But as I sit here, having done the breathing tests and a WOD today, my right lung hurts. It physically hurts. So, all I ask is that we figure this out and that the doctors consider that what is "normal" for others, may not be "normal" for little ole me.