A picture from last night. My head resting on INDY’s headrest I am passed out and not breathing. I am wearing a eye-patch as during my conscious states my eye finally had opened but the image had not integrated in my brain (just garbage). I am my sleepwear, which I lived in much of this week. On a 3 or 4 setting of oxygen and ‘Rabid’ my squirrel is on my lap. If you want to know why I call the squirrel ‘Rabid’, he tends to vibrate at very high speeds, is easily bored and well, look at those EYES! My fingertips are purple and my entire arms and torso is in secondary Raynaud’s (I lost consciousness due to lack of oxygen in the brain). I had pushed the panic button because I could not call Linda, without oxygen to my vocal cords. My heart had just stopped long enough to cause a major problem of loss of oxygen to my system, and I would soon need reviving, so I pushed the button while I could.
People see me with squirrels. People see me doing things like going to lava. And yes, my hair is falling out and I look like crap and I am visually ill an on oxygen but I am still out there doing stuff! Right? Wrong.
From ‘Anticipatory Grief Package’: A Patient’s Perspective “It is important for people to pace themselves and save their energy for the activities that are most important to them.”
I spend 99% of my time looking like this (the unmoving paced person), feeling like something scraped off the side of highway that stinks and sticks. I am in INDY, supported in my back and body by the Wheelchair INDY or the hospital bed, with head support. I do that so I CAN send postcards, and so that I CAN send emails and packages. I am now in constant oxygen deprivation, low saturation levels and so I have to focus and stay focused to get what I want done. Like blogs and like going out and feeding squirrels. This is my life.
“Loneliness increases as family roles change and the patient becomes more dependant on care.” Well, why don’t I continue as I was in Hawaii? Well first off, I didn’t have much longer that I could have lasted in Hawaii, and have been bleeding from somewhere, nosebleeds, spontanous bruising, anal, oral, lung bleeding ever since returning. I hope to build up reserves, and I am happy I went to Hawaii but there was a calculated cost beyond the financial (which cleaned us all out). This is another picture of me, here, I am not sure, maybe in pre or post seizure as my eyes seem open but rolled back. I am on the face mask, continuous flow oxygen at maximum with a ‘rebreather’ mask to increase the percentage of oxygen. See, I could BE in Hawaii because I had two people to bring me back from the edge of death and they did, they did many times a day. I have permanent damage from the trip, and I am LUCKY to have it limited to the areas it is. It was a great trip. But when I only have one or two hours of care a day, then trying to be at that level of activity is a good way to fall over due to lack of oxygen and stop breathing. And when Linda comes home four hours later, that is still how I will be. I know that because every week, even without 24 hour caregiving, I still have to be resuscitated or assisted in breathing, in stopping a seizure cycle, in regulating my heart about a dozen times a week.
You, the reader, you get a massive pain spreading across your back, or in your chest, it is hard to breath, it is spreading down your arm. You look down and you see a hand that has purple fingertips, and now blue fingertips and purple to the first joint. Someone calls 911 and you go to the hospital. This is a MAJOR event in your life, this is a heart infarction and the next one is going to be if not lethal, then will likely trigger a stroke. This is an event people often experience ONCE in their life. When they die.
I experience that almost every day.
After the squirrels, after the nice pictures, and the eagle, when Cheryl went home; I had gone without much sleep and pushed myself without reserves. Not low on reserves, but no reserves. So my legs stopped, and my arms. I sat there in INDY and waited for wetting myself. Linda was exhausted, my fingers were dusky and turning black, my thumb was black, my palm was black. That is how bad my circulation was. Linda got me into the bathroom and on the toilet. I had retention (I was too weak to trigger the muscles to allow me to pee – if you are older, these wear out and you pee yourself, if young sometimes, this happens, you are stuck, until it backs up into your kidney). Linda was too weak to be able to move me. “Beth, you have to help, PLEASE, please.” she begged me.
I couldn’t. I couldn’t move my legs, my hips, my arms. I was barely hanging on to conscious. I had been expending energy to hide the amount of care I needed. Part pride, part love I thought. Now I wondered if leaving Linda with an unrealistic idea was love or not. And when the reserves are gone, they are gone. So, I am stuck on a toilet, she is exhausted. What now?
She went and slept. We had, she had, NO ONE we could call. My parents response has been a combination of distancing and pretending that everything will work out so long as they don’t see it. We were alone. She gave me a drink to drink and when that was absorbed in 20 minutes I had enough strength to help drink the rest of it. Eventually I peed. Two hours later, she was stronger and so was I, and together we got me into bed. We also used a word to look into: Sling.
The amount of energy that most people expend making a nice Sunday breakfast is what I have for a week or half a week. That’s why Linda takes pictures of what I do. So, yeah, I’m really ill. REALLY ILL. Now does that mean that Hawaii was it? The last hurrah?
I am a calculating and ruthless bitch. Because my opponent is Death. Death feels no remorse, no feelings at all. There is no sorrow at taking me too soon. So what if I want what other people have as a sign of adult: understanding mentally, a job, goals, dreams, friends, to be treated as an equal? So what? If I ever miscalculate and I have, and Linda or some person at a place where I am usually banned afterward catches me, and I end up in hospital and that’s a mistake I can’t make again. So it happens right now I have minimal medical care. But I have oxygen and pills. I have a computer and wheelchairs. Sometimes I have both eyes, sometimes just one. It is what it is, and I have to win anyway.
So if it takes me 40 minutes to get out of bed, and it does, most days, takes 10 minutes to get a hand moving and under control, then that is what it takes. And if I miss the wheelchair, then I drag myself. Because that is what it is. This is it: life. There is no replay, there is no retake. If I want to live, then I have to keep going.
Most of the time I grin when I am in pain like when your skin is peeling the next day from a bad burn, a real bad burn. I grin because someone just told me that “Oh you won’t be able to take your wheelchair...” As I roll past them. The amount of times I have calculated the odds of just surviving getting to my pills in time, something like using up three days worth of energy to show some AB person who articulated that I must live in the box is nothing. It is so nothing, I give it a fierce grin.
I think back to Fredrick II, or ‘Fredrick the Great’ in Prussia, who grabbed Silesia from Austria, starting wars lasting 20+ years and resulting in the ‘Seven Years War’ which pitted the small Prussia against France, Austria, Russia and every other land power. Fredrick, one of the last great leaders to fight as not just the King but the General, in the field of battle, faced odds of 2 to 1, 3 to 1, French Armies, Austrian Armies and he won. Because he had to win. If he lost a SINGLE battle his small country was not doubled in power which Silesia would do, but lost. Only Britain was helping then financially. In 1759 it seemed that everything that Fredrick had fought for was lost. 47,000 Russians beat 26,000 Prussians; the French forced the surrender of Prussian Troops and Fredrick lost half his army in one battle, his worst defeat. He considered giving up and abdicating. I consider giving up. Giving in to the pain. Not coming back when they push and prod me to ‘breath’, and I start to follow that, but I do come back.
Fredrick considered suicide. And looking at what kind of death I have in front of me, I consider suicide a lot. It is not pretty, in the same way I am not pretty. I was never beautiful, but I was pretty, a strong woman and cute in my own way. But I won’t look like that again, I won’t be getting stronger. The arrow has pierced my breast, the saber is thrown from my hands. I was looking at pictures of me fencing last night and my goodness the power I had. Fit and strong. But that was then. Now I am mortally wounded. And so that is where for most the story stops.
I am not most. Nor was Fredrick. He went down among the people, and raised another army. The next year at odds of 3 to 1 Fredrick won, but the battle raged on, literally the entire continent of Europe was against him. And in the next year Prussia lost its last port to the sea and thus help from the British. Everyone believed that Prussia’s end was here, the army down to only 60,000 men. And then…..again, considering suicide, Fredrick found out that the Empress of Russia had died and Peter III ascended. Now Peter III LOVED Fredrick, because Peter III thought he was like a hero from a storybook, and in many ways he was. A King who risked everything for his nation, who every year took on the worst attacks and won, who faced the worse conditions and when it seemed that wounded in so many areas, Prussia was done, Fredrick went to the countryside and showed the people that THEY are Prussia. And he rose again, in front of a victorious army. Peter III withdrew the Russian troops and got Sweden off Prussia’s back and so Prussia took on and won the Austrians and French. It was the miracle. A miracle that had been hard fought for.
This did not last long as Catherine, Peter III’s wife (know later as Catherine the GREAT) thought her husband an idiot and killed him, then ascended the throne and settled the war, having everything return to what it was BEFORE the war. Prussia remained, Fredrick remained, and Silesia was part of Prussia, part of what would become Germany.
So, some interesting history, so what. The so what is that in two hours, after spending 4 hours with a doctor, and up late last night ill, I am going to badminton. Because at badminton I sweat, and if I sweat another week. I live. Or my chance of long term living increases. My chance of going to New Orleans increases. And heaven those, including the parts of myself screaming, “No, no, let us rest!”, heaven help those who try and stop me.
Because I haven’t exactly got over into ‘acceptance’ yet in the grief cycle.
One of the reasons I was at the doctor was medication, including more heart medication (we are now MAXED out Ms. Heart, okay?!) and florastor, my probiotic which is a prosthetic intestine for me. We are down to 12 days of florastor and then, though I am malnourished, I will have no way to absorb nutrients. That is on my wishlist. And unashamed so, because if I have to beg in the street…I have a cup. Yes, the needs seem high now: another wrist support and a book or something for Linda to have down time with. Linda, who alone, waiting for the help from Beacon and VIHA has not had a night off in over six months. She is always and ever there for me. I wish I could cradle her. I wish I could give her rest. Give her a weeks vacation. And I can’t even give a book. We need wireless phones (because sometimes like I couldn’t get off the toilet, I can’t get out of bed to let the ‘caregivers’ IN), Linda is figuring out which ones, and then they will show up on the wishlist. By Nov. 2nd, I have to sign up and I am signing up for Boxing because the longer I sweat, the more my skin, the largest organ in the human body, heals. And I need that. I am also signing up for badminton and volleyball. I have no money to sign up with. We found out today that I need to get oils, as my body can absorb the oils of the vitamins it is malnourished in having while it cannot absorb the vitamins. Boxing is $55, Volleyball is $45, the oils I don’t know. To some it may seem little to some it may seem doable, this week it is…….yeah. If you want to help, go to the blog, A Girl's Gotta Fly and email Linda. Because I can't REMEMBER, I don't understand the math things that well so she does that, and I try to focus on the surviving (and the flying!). So you can email her over at Girl's Gotta Fly if you are interested.
I am hoping, but I am not asking. I would if I could ask for help for Linda. Help her, but I don’t know how. Come over and watch me for a night, help me with my pills. But that is impossible for most if not all. And for money, I know how many people are having tough times. And look at me, I just went on vacation (a vacation that extended my life from months to over a year - survival). And in time, I will have resources. But now I don’t. I have no income and no health to generate it. And yet, I sell on Amazon, I will sell on ebay, I will create a nest egg and have that emergency money. It is just I kind of used emergency money on loot for people in Hawaii (I was one of those people, I admit it), and then with Tall Girl closing. I would not have the PJ’s in the picture at the top if I didn’t go and get them at the sale, that is how little clothing I have. I am using the same shoes I had when I was fencing.
Enough said on that, because I think I know that those who understand realize I am grateful for friendships, for all the forms of giving, which include even reading and try as much as I can to reciprocate, because that is what friends do. I just know that I am going tonight and I am going to boxing on Monday, I just don’t know how. And I believe that in a week or so, I will be able to eat because I have the probiotic and oils I need. I believe that. Because if I don’t live, then I can’t do what I am meant to do, which is be there for as many people as I can, as many as my energy allows.
I die, I am brought back, I am wounded and bleed, I am in pain and struggle, spending so much energy to survive so that I might sit still and save the rest. I save it so I might spend my energy on others. Making sure that the others who feel the ‘alone’, others will have some way, some hope to get them through the winter. And I will help them find that. I will be with them. That is the other 99% of my life. Surviving on the edges. And sometimes it means eating ashes, like sitting on a toilet waiting for someone to be strong enough to lift you. And sometimes it means dragging yourself. And sometimes, it means getting a letter saying, ‘Your letter/gift/emails made the difference……’
Oh, and I WILL get to New Orleans.
7 hours ago