Friday, December 5, 2014

Strange Days

It's a strange thing when what you have been trying to avoid most for 8 years becomes the future you must face. First there's a time of relief.  Everything you have done to prevent something from happening ultimately did not work. Huge sense of relief comes with that knowledge. You are no longer trying to hold back the sea. No longer looking for minor positives in the most mundane of medical test results. This fight is over. Relief.

I very much wanted to be one of the ones with my disease that are able to find stable enough ground to just keep going. But my heart seems to be set against this. It just does not want to get smaller. So now it's time for a drastic change.

Thankfully, the bulk of my testing is done for now. There will always be more tests, more pills, but no more big hurtles right now. For this I am grateful. I recently went through a short period of panicking at the thought of being touched. Too many painful intrusions from the medical community I guess. Unfortunately, it translated to freaking out at the thought of someone hugging me or coming into my personal space. I could have almost kept this to myself and my beloved caregivers, but my birthday fell right in the middle of this embarrassment. I didn't follow up with any of my friends to see if they were still coming. If I had talked to them, I probably would have shied them away. I almost didn't show up. But my beloved small group of friends are...I can't even think of the right description right now, but trying to makes me smile. Adventurous, spontaneous, extremely giving, loyal and at times totally forgetful. Which is why they were not there. It makes me happy just knowing that they are in the world just being themselves, doing all that they do.

Now I am trying to plan for a future that I am not sure exists. Legal papers, house repairs, house updates. Lung transplant for a pulmonary hypertension patient is a little tricky. All of my blood vessels are under more pressure, so I am fast to bleed. They will also have me on large doses of anti clotting solution. Then there's the right side of my heart. It's 3 times too big and pumping hard. When my lungs are replaced and the pressure is relieved from my heart, it will keep trying to pump at the same rate. Way to hard and fast for healthy lungs. It's supposed to take a couple of weeks for it to stop trying to compensate. The walls of the right chamber have also thickened up to be able to keep up with my body's needs. Right now I am still okay, but if getting the lungs get drawn out too long then I may have to also have a heart transplant. But we are not there yet. Please give me time to take care of what I need to, but please make this over with soon.

I think about swimming a lot these days. Floating on water. I daydream that there is a pool in our backyard. Nothing deeper than 4 feet. Just big enough to do a handstand in the middle without hitting the edges when my legs come down. A semi circle bench and then a small waterfall in the middle of the seating on one end. Not the huge kind with water going just over the rocks. More like a short waterfall shower so that I can sit on the bench in the pool and have water pour over my head. Salt water pool. In my favorite daydream there is no chlorine smell. Just the sound and feel of water surrounding me and pouring down on me. This is the image and feel that my mind takes me to when I try too hard to think of other things that I cannot change. One more thing I am thankful for.

Thursday, April 24, 2014

The Right Words Correctly Felt

There is a popular story amongst PHers, although I do not know that it is exclusively ours but it could be. The story goes that there are two women friends out to lunch. One of them has PH, the other is healthy. The healthy friend is curious and wanting to be supportive, asks what it's like to live with PH. The friend responds by getting up from the table and collecting all of the spoons off of the other tables in the restaurant (probably quite slowly) and brings them back to her friend. She tells her that each day she starts with a certain number of spoons and that each thing she does takes away from that number. Start the day with just a few spoons and it doesn't take much to run through your supply.

Personally, I never liked stories like these. Too....cutsie.  But it gives a quick language between PHers that provides comfort and immediate empathy. The story also narrates to others outside of our world what it's like for us. But still, spoons just aren't my thing. I guess I am a little grateful that the woman didn't grab all of the knives from the other tables. "The Knife Story" seems like it should narrate something a little different. Although the facebook posts could get interesting. "So many things to do today, and I've already run out of knives."  Or if they had been at a cheap fast food place, thus naming it "The Spork Story".

Last month my family and I staid the weekend in Beavers Bend. We used to do this every year, but over time - actually almost all at once, many of us left home for other states.  Now some of us are back, all of us are older, and having these weekends together is even more special. At least to me they are. I'm not doing any roller skating in front of the cabins anymore, and I don't think any of us own a tennis racket. But we did sit outside and blow bubbles. We went on a train ride, grilled, played games.

I've found that family relationships get trickier and yet simpler as I've gotten older. I still hope the best for everyone, but it seems to hurt my feelings more now when I see them making excuses for unfortunate behavior. I know the reality of my situation, and I think my family does too, and not talking about it is kind of my way of staying positive. But too much watching others behave poorly kind of weakens the resolve to stay private. Well, that and tiredness. Tiredness always spills the beans. I bet some extra spoons would help clean that mess up. That paragraph barely makes sense. Must need nap.

And so I divulged to a few family members in a weak moment that things were not getting better. I am not holding stable, that everything I do in hopes of this has showed little effect. I told them I felt like I was caught in a mudslide moving quickly down a mountain and there was nothing I could do to stop from being devoured.

This month our PH support group meeting was a little different. We spoke to a group of people with various other lung conditions. During our story sharing it very unexpectedly came out that many of us do feel like we are at the edge of some presipice looking down. Walking on the edge of a cliff, at the top of a roller coaster about to drop down. How's that for relatable Spoon Story?

Wednesday, March 19, 2014

And Then Everything Changed Again

I have been losing track of time. I think it was almost a year ago that I changed PH doctors. About a week later I was put on a schedule of Flolan increases. I'm truly hoping the next time I read this post that a cure has been found and what I have put my body through will be a distant memory. Actually, lunch today is a distant memory so safe bet that even without the cure I am going to block most of this out. Oh bother.

Each increase, done every two weeks, has been a new adventure. For one of them I was really sleepy until the next increase when I had a headache until two days before the next increase. That one brought nausea. Some are a random combo of side effects. I now have a box of immodium at each of my caregivers homes, along with pain and nausea meds. I lost 20 pounds last year and I sleep with oxygen on. I also use it after meals and whenever someone just offers to turn on Darth Vader. Not so named for its looks, but rather for its sound as it pumps air down a canula to me.

 My platelets have staid down, so this past year has seen some pretty spectacular bruises. Most notable would be the black eye I gave myself from rubbing my temples during one of my two week headaches. That one just laughed at pain meds. Next notable was when I rolled out of bed hitting and taking with me the nightstand drawer. My cheek hit the corner of the table, my arms landed hard on my porcelain trash can and bed frame sideboards. It didn't help that our bed sits high. So many bruises. Karl was concerned about being seen with me in public. Thankfully, the weather was cooler that usual and wearing a cardigan everywhere was not out of place. Must remember to not roll out of bed during summer. And there really was no reason for it to happen. I was awake, my tableside lamp was on. I think the only reason why I went over was because my pillows were arranged a little funny. I was rolling over and the pillows kind of kept me going in that direction.

So many events that I had to cut short, not getting to spend as much time or even any time with loved ones. Snapping more for no reason at all. I noticed a pattern of prolific imaginative cursing whenever I was tired, so I trained myself to say "biscuits" instead. Jane still recognizes it as being fowl language and will still leave the room even when I whisper "biscuits". At least it's more socially acceptable in the children's section of Target.

Having PH was already life limiting. Adding on med increases takes away so much more. But then there's the hope that it will all be worth it. That when you are done increasing, you will have gained health back and will be able to make up for the time you lost.

And then sometimes it goes the other way. I don't know why, but my heart is just unwilling to fully cooperate. My last MRI showed that the left side of my heart does have a little more room to beat, but the right side is still three times too big.  The blood test that measures the amount of heart damage I have is getting worse and faster. But still we hope. Still we do these increases. And another MRI is just over a month away. I'm guessing that afterwards I will be told that I will have to be on the lung transplant list again. This time it will be for real. I'm getting around pretty well, but with the stress that my heart is under, the worry is that I will go to sleep and then just not wake up. It's a little strange to wake up from even a nap feeling relieved to do so.

So I am flailing. I've started going to an energy healer about twice a month. Having enforced meditation time has been very relaxing and I always leave feeling happier. I have started seeing a personal trainer twice a week. If there is a chance that I am going to being having a major surgery, I want to make sure I have as much strength as I can muster. I enjoy the workouts even though I think the pain of creating new leg muscles is cruel for someone on diuretics.

I worry for my husband and family. I knew that death was part of life, that was the package deal. What made me fully understand this was losing my dad. Living without someone, even a person that you had problems with, is hard. Not having their voice in this world, them not being reachable, knowing that their experiences here have stopped, that's harsh. It's hard to figure out how to live that way. I see people on facebook who are obviously unable do so. I very much want to spare my husband and family and friends this experience. Ugh. I have got to stop moving the tissue around the house. I shop at Costco, there is no excuse for this.

I have got to get some sleep. This was a good start. It's nice to get this all down. Whenever I think on these things, my mind floats me back up with hope that maybe this round of increases will work, that I shouldn't worry because everything could work out and then I would have wasted perfectly good time worrying. We could find out that pixie sticks cure PH. Anything is possible.

Monday, March 17, 2014

Just.. Ugh... Everywhere

As I am sure I have mentioned many times before, I am on massive diuretics. My heart and kidneys just can't handle my water addiction, so I take lots of little white pills. An inconvenience, but whatever. The annoying part is how often I'm in the loo. I sometimes feel like I have visited every public restroom in the greater DFW metroplex. All of this sitting has taught me a few lessons and I now have a bit of a personal manifesto.  I have considered mass mailing parts of my list to gas stations and restaurants. Undecided on whether or not to include a complementary air freshener.

Always put toilet paper on the seat before you sit. This insures that you know ahead of time about any water droplets left behind and if there is enough toilet paper on the ring. This is a vital step that I believe is worth a few seconds of closed knee dancing.

Bathroom doors should always have a coat hook. Two would be better. Locks should be regularly checked and repaired when needed. Having to hold your purse on your shoulder and keep one foot against a door of the handicap stall takes practiced balance.  Not that I often use the handicap stall, it's just that sometimes you aren't given a choice.

There should always be a trashcan next to the door. I have a preference for grabbing bathroom doorhandles with the paper towel that I dried my hands off with. My 3 to 5 ft. dunking skills are pretty great, but an extra trash bin is just courteous.

I absolutely hate it when the floors are wet. I don't want to have to worry over whether or not my long line touched the floor. The line would be okay, but I keep it tucked against me or in my pocket, so...ew.

All this being said, let me tell you about how I tagged two bathrooms in one week.

One was in the emergency room. I had a pump malfunction and had gotten a bolus of my heart medication. The malfunction was totally different from any of the others that I had before, and I truly thought that the problem was with the internal part of the line. I had never had a bolus before and I thought I was going to have a heart attack. The whole thing was just weird.

Of course, if I had thought about it for more than a second, I would have remembered that I was using a new refurbished pump and I would have started by trading it out with my old reliable one. But I didn't think of the obvious until I was already in the emergency room being x-rayed, stuck with rather large needles and hooked up with my very own ekg. Sticky tape everywhere.

They had me take my shirt off and put on one of their gowns, but let me know that I could keep my jeans on. I thought this was a benefit. Then I was asked to give a urine sample.

I had my pump on my shoulder, jeans around my knees, trying to keep 10 yards of hospital gown and long line out of the toilet while holding a coffee mug sized sample cup between my legs, desperately hoping that I was capturing anything because I had somehow gone into silent mode.

Well my cup runneth over. This was something that I could not see until I was prying it out from between my knees. The cup was covered in urine but I couldn't do much about it in my current position. I tried to utilize the closest ledge, but it was half the width of the huge cup and it tilted towards me. I opted for the equally uneven sink thinking that with it I at least had a 50/50 chance that it would fall into the sink and not on me.

I gratefully used one of the wipes they provided and somehow managed to get dressed and quickly got the lid on the cup. Urine immediately started leaking from the top and onto the sink and floor. I couldn't figure out what the problem was, and I couldn't make it stop leaking. So, handling it like an explosive, I took it back to the toilet and slowly removed the lid. I finally figured out that the flimsy handle on the cup had a leak. I resealed the container and then looked around the small room surveying the damage. It looked like a small boy tried aiming while chasing a squirrel. I cleaned up as best as I could. The whole thing made me feel like Leslie Nielsen was going to bust in at any moment.

I was in there so long that my nurse finally came to check on me. Nothing like being 37 and having someone ask if you need help doing something you've written a manifesto for.

High on the rush of my first act of nature's vandalism, I tagged a Starbucks. Actually, I tagged myself at a Starbucks. I try very hard to buy a little something from the places that I intend to quickly use and then quickly forget about. Gas stations make this easier for me by providing oversized peanut butter cups for my travelling companion.  Starbucks actually poses a slightly greater challenge because of the need for strategic caffeinating. Best not to get hopped up on lattes late at night when you already have an insomnia problem. But oh the temptation.

It was dinner time, my mom and I were heading home from the mega grocery store, and I very suddenly absolutely had to stop. Thankfully, there was a coffee shop oasis just seconds away. I think that if I visited there on a more regular basis that maybe I would not have been so distracted with all of the coffees and sandwiches. Must...not...order...latte. I tried to pick out my snack en route so it would be ready by the time I reemerged a lighter woman, but there were too many choices. The slight slow down was my downfall. I made it to my destination and all was going well until I saw that I had left the door unlocked to the single throne room that I was occupying. All cushioned seating was taken outside my door that just happened to open out directly to the room. Anyone else trying to occupy my space would have given everyone a glimpse of my one woman show. The door could not remain unlocked. I tried with my best muscle control to stop midstream to push the button, but I failed like Jane when she rushes from her squatting place when being asked if she wants to go to the park. Except I did not also twirl like she does.

Turns out, the door was locked the whole time. I hadn't realized that it was an "outie" I cleaned up as best I could, and then confused my mom by turning down food (free food!). I think I said something like, "Yeah... we should go now." I wonder if the baristas noticed that I tipped without ordering.

Lessons learned: When given a hospital gown, just get undressed. Inspect any small plastic cup that you are going to pee in for cracks. Hospital cleaning staff needs a tip jar. Double check bathroom locks before unzipping anything. Carry hand sanitizer. Starbucks sells decaf lattes and passion lemonade iced tea.

Sunday, November 18, 2012

Something's Missing

If you told me that someday I would miss a man that cackles like an old woman, manic to distraction, and still pulled stunts like peeing in his sister's shampoo bottle, well I would have told you that you were as crazy as that guy sounds. It's been six years since Dad was killed by a drunk driver, and I miss everything about him. Well, almost everything. That shampoo business was just wrong.

I wish I could say that I honored him well today, that I did and cooked all sorts of fun stuff. Instead I watched sad movies, ate little and napped long. But something that I'm truly thankful for, I had a nice dream about him. I think it's hard enough to have a dream about the person you want to see most, but to do it and have the person look how they are supposed to and act like they are supposed to is darn near impossible for me. Usually my naps include some stressful nightmare. This dream was lovely and fun. When I got up, Pandora played lots of Van Morrison.

A very long time ago, I went to an outdoor Van Morrison concert with him and my family. I was too young to know who I was listening to, and all of the music sounded the same to me. What stayed with me from that night was resting on our picnic blanket and watching the clouds drift. And how happy he was to see this guy sing.

I have a small dark bonus that surprised me. I can't remember the date I was diagnosed with PH. I know it was just the month before he died, but I have no idea when. So many other people that I have met have that date seared in their mind. I can barely remember the moment I was told.  I gotta say, I'm kind of grateful for that. So much about this condition is paralyzingly scary, but having such an immense distraction happen at pretty much the same time really helped to cement that this is just a thing. Today I have PH. Who knows about tomorrow?  It's not something that made his death meaningful or anywhere close to worth it, but it is the tiniest string of silver, and I need every trick to keep my mind on track.

I know I'll be thinking of him even more over the next few days, and I'll try to contain any manic overabundance of cooking, but I will be practicing my crazy hag cackle and my kitchen dancing skills. Just me and Van.

Saturday, November 17, 2012

Not The Blue Ribbon I Was Wanting

Winter has awoken, and so has my internal champion weight prized pig. And she is huuungry. Christmas before last, our family lost someone who was deeply cared for. I marked the occasion by putting on 5lbs. I guess over the last two years I had been worried that my 5 would be lonely, so I gave them another 5. Now I'm in no pants land. The size I should be in is snug and the size larger falls down.  My abdomen stays on the tender side because of water retention and my ever changing Flolan Rorschach spots. So it's either wear something that hurts or risk accidentally pantsing myself. I'm starting to see the sense in velour jog suits.

When I was at my if-I-turn-sideways-you-can't-see-me-weight, I was thrilled to put on some poundage. I needed the body fat to stay warm, not get painfully hungry, not fear wooden benches. I don't think you can know the importance of a padded bottom until you sit down hard at a picnic table. The extra weight seems to fit me well, I've gotten more complements than ever. But still....

Somehow this last 10 seems unfair. Like squatters have taken over my thighs. My goal is to evict 5lbs. Doing so will put me back into all of last year's fashions and pants size. So, in an effort to reclaim what is mine, I decided to write down the healthy meals that are easy for me to make and then cross referenced them with what I actually had in the pantry and then made out an excel file of the items (numbering 8) I needed and which stores I would need to go to (numbering 4) . Then I had to clean out the fridge of desserts and dinners past that were not actually going to get eaten, got rid of the stuff that no one should eat, poured over recipe books sure that someone else could come up with better meal plan that did not include protein powder mac&cheese. Grilled my husband on what he liked to eat, tried to come up with a game plan of restaurants that were safe for me to eat at (sushi, Thai, salad bar), realized that even what I actually eat there is never as angelic as I had originally hoped (fried tofu, green curry, opt for pizza instead of salad). Decided that I could no longer be trusted to eat out and must give it up. Mourned the loss of my lunch's out with mini ranger cookies. After 2 hours of making myself crazy, I decided that just paying attention to what I ate would be easier.  Today was going to be the first day.

1 cup OJ mixed with fresh Pomegranate Cranberry Juice
100 Calories

Breakfast 7a.m
1 cup Buckwheat Flakes with 1/4 Banana and Flax Milk
200 Calories

Snack 10a.m.
1/2 small bag Potato Chips with 1 tbl Salmon Spread and Cherry Coke
310 Calories

Lunch 12:30p.m.
Cheeseburger and Fried Onion Petals with Iced Tea
Oh the humanity! Calories

Stop on the way home 1:15p.m.
Chocolate Croissant and Almond Pastry
Oh the pounds will show up tomorrow, bet they're on your bottom, tomorrow! Calories

Nap to avoid eating anything else 1:37p.m.
Considering a sleeping pill - does it have calories?

Woke up waay too soon.
3 bites of Almond Pastry, 1 of Chocolate Croissant
1 Zantac after I remembered that heartburn was the reason I woke up. Pastry did not help.
Doesn't count, still asleep. Calories

Dinner 6:30p.m.
Rotkohl, Steamed Asparagus, Honey's Turkey Meatloaf
No idea, but I didn't use oil, butter, bacon, salt or cheese, so I don't care. Calories

11:30p.m. Bedtime
5 large purple Grapes
? Calories

Okay...sooo. Yeah. How have I not put on 15 lbs? How did I fit all of that food into me? Is there any Cherry Coke left? At least I know that whatever I do tomorrow will automatically be better than what I did today. Especially if I put the cola in Karl's lunch bag.

Tuesday, October 16, 2012

Runaway Shopping Cart

Day 1, Living Like We're On Food Stamps
Breakfast started late, so I made a quick pad thai, Karl had coffee and I had iced mint green tea. 
Total cost: $1.75

Then we went to Costco.  The experiment was declared dead all of four minutes later. One of our staples was on sale, so we loaded up. A third of the month's food budget was gone. We celebrated by going to Burgers and Brats - I had a veggie burger with onion rings, Karl had the Road Rage Burger with fries. We both had iced teas.
Total cost: $23.46

After my nap, I had a small ramekin of greek yogurt with a bit of blueberry jam and a glass of my iced mint green tea.
Total cost: 50cents.

Dinner was chipotle honey braised chicken with cheesy rice.
Total cost: $5.50.

What I decided to do instead was to create one chart for our monthly expenditures and another for what exactly I'm buying at the grocery store. The second chart also tracked what got used up, and what got tossed. These charts are kept on the front of the refrigerator.

This system has totally worked. 12 days into the month and I have already been shamed into eating out much much less. Our household had collectively eaten out more times than days had gone by for the month. Unfortunately, Jane and Coco cannot be included in the math. If they were, I so would have had Thai food today.