Dreamscapes

Last night I awoke around 3:00 and couldn’t fall back to sleep. Part of the problem was physical – knee, hip, and foot pain that I couldn’t get rid of no matter what position I was in. But the bigger problem was mental. I started worrying about things like getting Apria to pick up their equipment before I was charged for another month of service after Walgreens delivered (Walgreens has been wonderful so far). I also worried about getting an appointment scheduled for Dr. DeHart in March. She didn’t want to see me that soon, but Metlife, my short term disability carrier, requires it. Then there was the issue of getting the office notes faxed to Metlife (I had a horrible time trying to get this done in Jan/Feb and ended up picking up the notes myself and having Greg fax them to Metlife, although DeHart’s office finally came through at the last minute). I was too worried and anxious to fall back to sleep.

I’ve also noticed a common recurring theme in some of my dreams. In several dreams now, I’ve been away from home, without a car, without a working phone, out of reach of Greg, and sometimes out of oxygen. These are not quite as bad as the train wreck dream I had a couple of months ago; actually, it wasn’t a wreck so much as just me being hit head on by a speeding train. There was nothing else to the dream. It took a split second, and is still crystal clear. The simplicity of it made a big impression, I guess.

O2 needs. Who knew it would be so hard?

O2 needs. Who knew it would be so hard?

Today I learned that I cannot get the oxygen therapy service I need to continue being active with water and pulmonary therapy. Apria is unwilling to provide me enough portable tanks, but they can provide the high-liter flow concentrator. Lincare will not provide the tanks without also providing a concentrator. As soon as I can stop crying long enough, I’m going to call Walgreens. I think that may be my last option.

Time on my hands, believe it or not

Time on my hands, believe it or not

I stopped working on November 9, 2009. Lots of other things have happened since October, but I would rather spend this time writing about my day today. Maybe details will surface from recent past events, but it’s not a priority. Except for this important point. We made a second trip to National Jewish in December after the bronchoscopy cultures identified a mycobacterium. I’ve been taking a variety of heavy-hitting antibiotics to try to fight the infection and not cause too many serious side effects. Also, Cathy Vance and her husband Terry came to Albuquerque for a whirlwind visit right before the second Denver trip. We had a great time getting reconnected.

Today was Saturday. I felt “aimless,” as I explained it to Greg, because I don’t know what I should be or want to be doing with my time. I went to Hobby Lobby for jewelry supplies (pottery shard earring repairs) and to Macy’s to see about a bed comforter set. Then at home, I took down old curtains in preparation for Greg to install new rods for new curtains, and did several other ½ tasks. While all these things were “on my list,” it still felt like wasted time. And for some reason, suddenly we both want to rearrange all the furniture and go through all the closets and storage boxes to get rid of clutter. Greg says it’s because he wants to do pre-spring cleaning.

God reminded me of a couple things today. First, when things aren’t going right, it is because Satan doesn’t like what I’m doing and wants to derail me. “Count all things joy.”

Second, I tend to stress myself out for no reason, especially when I have too much time on my hands. I’ve always been this way, but now it actually matters to me. God reminds me to enjoy each moment, especially those spent with other people. Just simply enjoy them. I think that it pleases God. And it pleases me, too.

I must have done something right!

After hearing the doctors at National Jewish finally say things like “terminal lung disease” and "less than 5 years to live," Greg and I were finally able to talk about our feelings to each other. It was tearful, of course. I still don’t know why Greg loves me so much, because I don’t feel like I do anything for him (he has always done EVERYTHING for me). But this is what he said to me: “All it takes is one look from you from across the room and you fill me up. With one look, I am whole. I am loved, cherished, enriched. I am complete. That is everything!”

Thank you, God, for whatever it is I did right! And for giving me this indescribable man to share my life with.

I should mention here that we're not buying the 5 year prognosis. I was originally diagnosed with this disease in 1995. 14 years (and two diagnosis changes) later, I'm still going -- although a little slower. Nothing about my case has been textbook, and there's no reason to think that will stop now. Still, it's a good idea to be prepared.

It's an awkward time

It's an awkward time

I'm fresh from a week at National Jewish Health in Denver, having had dozens of tests and procedures performed to try to diagnose and treat my lung disease. The final diagnosis is interstitial lung disease (probably the sub-category called usual interstitial pneumonitis), which has a very grim prognosis. The doctors tell me that if nothing changes in my treatment, I won't live 5 years. And, if treatment changes are made and one year from now I am assessed at the same lung function levels I am today, we will consider it a success. The meaning of words like "treatment" and "health management" have changed significantly for me in the last few days.

I'm on oxygen 24/7 now, which means I must calculate how much O2 (that is, how many and what sizes of tanks) I'll need whenever I leave the house. I also have to be prepared for problems like car trouble and equipment malfunction, so that means carrying spares of everything. I will never be truly portable again. And riding in someone else's car as a passenger seems like it would make it easier. But in fact, it makes it more of a challenge. I am fortunate to have a Honda minivan, which is configured nicely for a person with arthritis, with plenty of room to set my tank upright in its trolley on the floor in the back seat. Most cars (not including vans) are just not as user-friendly for people who carry O2 equipment. For me, the Odyssey is perfect.

I'm still working. My family is encouraging me to file for disability. But from what I've read, I must stop working in order to begin the filing process. Because I work a fairly sedentary job, I can still function well enough to do my work. I'm at that awkward stage where it is an inconvenience (and annoying) to deal with the tanks (I usually carry 2, just in case), but I can still do my job. This sounds like a bad situation to be in. But when I think about the next phase of this disease, I can't believe I haven't pursued the disability claim yet. I never thought it would be difficult to make this decision, assuming that "decision" is even the right word. It's not like I can just choose to become disabled. The decision will be made for me by analysts who examine my medical data and absentee records. My choice, I guess, is in deciding when to stop working. But if I can work, I want to work. It is a dichotomy. And to make it more of a challenge, I don't particularly like this job that I'm still capable of doing.

I'm guessing that at some point (a few weeks? 6 months? A year?) I won't be able to carry enough O2 with me to do a full day's work, or I will feel too bad to come in to the office. When that happens, the disability "decision" will be easy. In the meantime, my family doesn't understand why I continue to work. I'm not sure I do either, except that part of me is scared to death to stop working.

Walking with Monty

 
Yesterday I took my dog, Monty (Basset hound), for a walk. Or I tried to. I was using a small portable O2 tank with a conserving regulator set at 5 LPM. 5 LPM is lower than my official dose of 6 LPM when active, but it is the highest setting on that regulator. It has been sufficient in the past, at least for the most part.

Usually, if my O2 saturation rate drops below 92, I will slow down or stop or focus on my breathing method and my O2 usually comes up to an acceptable level. But this day that didn’t happen. Even though I was doing my breathing exercises the entire time, my oxygen levels hovered around the low to middle 80’s during most of the walk, whether I was going uphill or down, and it didn’t recover when I stopped. Even Monty, who thinks of a walk as a long series of smell stops, thought I was going too slow. It wasn’t until I reached the driveway that my O2 sat rate finally climbed to 90.

I know I need to order the high liter flow conserving regulator that goes up to 6 LPM. There is only one made that goes up to 6, near as I can tell. Once I surpass that liter flow dose, I’ll no longer be able to use conserving devices. My world just keeps getting smaller and smaller.

I realized a few days ago that it will be tricky for me to negotiate a buffet line at a restaurant now. My husband and I used to love to go to Furrs with my parents. Greg tells me not to give Furrs up yet, that he will carry my tray. I am so very lucky to have him! I will be giving up a lot of things in my life over the next months and years, and he is determined to make that progression as slow and as painless as possible. I love him so much.

Memories and blessings

Memories and blessings

Every once in a while something triggers the thought that there are many things I'm going to miss in this life. It usually starts out when I am petting one of my cats, or gazing at the mountains on a particularly clear day, or talking on the phone with a relative. But lately it always ends up with the image of Greg and me crying the night we first broke down about my prognosis. We wept together, speechlessly, at the dining table on the patio just as it was getting dark. I have never seen Greg so broken, sad, and afraid. It very nearly broke me in half. I hope I never see that look on his face again. But I know I will.

I remember the first time it occurred to me just how important memories are. I've always been the type to dwell on bad memories, criticizing myself and replaying the memories of regretful mistakes over and over in my mind. I'd always wished I could selectively recall only the good things, and just let the bad things go to the wayside, as long as I've already learned their lessons. I thought that life would be better if it were filled only with the memories of good times, successful choices, admirable acts, and kind or thoughtful words.

Even the negative memories are crucial to the balance of a meaningful life. The seemingly simple function of recording and retrieving a memory is actually an amazing thing. Memories are carved into the brain like grooves, and the more often a memory is retrieved (recalled), the deeper and stronger that wrinkle becomes. So why don't we do that more often with the happy memories, so they can be retained accurately and clearly long into old age? (Perhaps some of us are better at this than others!) But the reality is that even the unpleasant memories are sweet and enriching, in a bizarre way, partly because they trigger strong emotions that are sharp reminders that we are alive and human, but also because they play such a great role in shaping our ultimate character. On a more basic level, memory is just another function of the human body, any one of which may fail eventually and we miss it when it's gone. After watching my mother gradually lose the ability to recall her memories accurately, I came to the blunt realization that the simple ability to recall something -- anything -- is a blessing, even a luxury.