Friday, March 7, 2014
I have been making a concerted effort to eat more, and more often. I’ve always gotten stressed about “meals” because I just can’t eat copious amounts of food at one sitting. So I graze through the day but sometimes forget that it’s okay not to eat full meals like other people. My body just can’t process that much food all at once. So it’s oatmeal when I wake up (most days) with fruit and smart balance butter. Later I have leftovers from my dinner the night before. In between all this I snack a lot and have added things to my diet that are high in fat.
But the pain has an insatiable appetite, Picture Pac Man eating your food. Pac Man being the tumors. The adrenaline from fighting the pain eats away at the pounds and no matter how much or what I eat, it doesn’t stick And I’ve added things to my diet that I normally never eat because the food is hard to digest. I’ve been eating ice cream made with coconut milk (mainly). It does have some milk in it and my tummy is sensitive to it but it’s very high in fat, which I need. I also bought chicken sausages the other day. I have very high cholesterol so I have to be careful but at this point, who cares, right?
And that is my conundrum. I am absolutely ambiguous about living. Perhaps that is what my soul is here to learn. How to love life regardless of the body’s particular challenges, which seem way over the top sometimes. Okay, most times. I say I want to go HOME yet I get scared when the weight starts falling off again. And when I get a notice that it’s time for my mammogram (having had breast cancer, I should have had a double mastectomy instead of just the right) I don’t want to bother because I’m so thin there is almost no breast tissue. However, there are multiple tumors all over my chest and getting a mammogram hurts like the devil. So I’ll probably let it go. Because even if the cancer was back, I am not going to treat. Not even a mastectomy.
When I think about not fighting anymore, I feel this little piece of me putting on a pair of boxing gloves and getting back into the ring. An uppercut here, a jab there and a full blown knock-out to my head, which has so many tumors in it my ears, ring constantly. I have had tinnitus for over 24 years. I’m used to it so it’s not maddening anymore. Unless it gets so loud I can’t hear. My ears, my eyes, my legs and all that is inside of me scream for release. But my soul screams “No, not yet” Maybe it’s just fear of the unknown. Or fear of the known, but forgotten. I do so wish I could remember what came before this.
Yesterday, I took my car in for emissions testing. I timed it based on what I heard years ago about how to avoid long lines. So I went after lunch time and at the beginning of the month. The whole thing took 15 minutes….no lines and I passed. I was worried because I so seldom drive it I thought there would be a problem. I was so overjoyed that I got it done (I had been struggling with whether or not I should even keep it but I’m not emotionally ready to let it go) that I high-fived myself when I got home. Really. Little victories.
Posted by Sherri at 8:47 AM
Tuesday, March 4, 2014
I have been reading and thinking about soul survival, life after life and reincarnation. So I’m reading and re-reading a stack of books on the topic. In doing so, I have been pondering three separate events that were past life experiences (I think). One was spontaneous and no imagery was used. The other two were guided, though one of those was a group thing. I want to emphasize that all these experiences happened years before I became dependent on opioids for pain control. If anything, those medications stopped the process and I miss it terribly. They have been happening since I was very young; I just didn’t appreciate it until they were gone. These three are just a sampling of things I have experienced (as mentioned earlier)
This happened about 1988 or so. A friend asked me to accompany her to a past life seminar given by a local woman. I was skeptical beyond measure, and went with a kind of eye rolling acceptance which really isn’t very supportive but hey, I was young. The leader had this crystal bowl and a crystal wand which she ran along the inside of the bowl. The sound was the same as when you dip your finger in water and run it along the rim of a crystal glass. Eerie sounding. While she did this, she chanted a bit and then instructed us to go down a path, find somewhere comfortable to sit and then the rest I don’t recall.
I don’t recall because I had gone into some kind of trance. I saw myself as a little boy in the desert. I looked up and saw a stern looking man on a camel staring down at me, somewhat annoyed. I must have been about five years old. After a minute, a huge black spider crawled up my leg, bit me, and I “died”. When I came to, people all around me were asking if I was okay. I had no idea why they were concerned, but apparently, I had been making quite a bit of noise. I laughed it off and frankly, didn’t even remember the incident I just relayed until months later.
Okay, here’s the deal and this is where is gets “hairs on the back of your head standing up” My whole life I have been TERRIFIED of any spider, big or small. I actually had been known to leave my bedroom and sleep in the living room if I spotted one in there. Once, I woke up my roommate’s boyfriend to kill one that was in the bathroom. A phobia times 100. About three months after the “regression” I noticed a spider crawling around and I bent down, scooped it into a cup a let it out. I stopped in my tracks, realizing I had been doing this for a while now. I could not figure what changed so rapidly and abruptly. Then I remembered the regression. And for the first time since it happened, I remembered the details.
Phobia cures? Past life? Who knows. But it’s something to consider.
This was a spontaneous experience and not a result of regression or meditation or hypnosis. And again, it happened a good 18 years before I was taking any medication and nothing recreationally.
I was in a health club working out. I was there early because I worked there too and it was just the staff before we opened. I had finished up and went into the steam room, where I had gone many times before. I was sitting in there alone, quietly, not thinking of anything when suddenly out of nowhere panic hit me like a freight train. I FELT and SAW dozens of naked bodies around me and we were all gasping for air. The steam was suddenly gas and I knew I was about to die. Frantically, I groped my way to the door, got it open and still gasping, slid to the floor.
A few people were walking past and stopped to make sure I was okay. After a few moments I was, and even went back into the steam room because I knew if I didn’t, I’d have the start of another phobia.
What was that? I don’t know. And I know that as a Jew, stories of the Holocaust were plentiful and it could have easily been the product of a memory of a story. But I don’t think so. I think it was a memory of an experience.
This was an actual guided regression and happened when I was first beginning to take medication. But I was not “high” from the drugs. In fact, those who take opioids for pain don’t experience the high that addicts do. If they are lucky, they experience a lessening of the pain.
My memory of this experience isn’t as clear as the other two so I hesitate to use it as an example. But my therapist has reminded me of it from time to time and her memories of my experience, her notes, and what I expressed remain clear with her.
I saw myself as a little girl in a small, weathered wood house in a rural area. My dad was trying desperately to save the family from bad men, who turned out to be Nazis. He failed, and I was taken away. I don’t recall much after that. Again, the Nazi theme may be due to my Jewish heritage; on the other hand, from what I’ve been reading, it sounds like patterns are repeated in each life we live, assuming we live more than one. And I respect those who don’t buy that. On the other hand, it would make sense that my previous deaths have been violent, my lives troubling and challenging physically.
I want this circus to be over. Grant it, most people live their lives challenged in some way. In fact, I think those challenges are necessary for spiritual growth. There is this Chinese proverb (I think its Chinese) that goes: “May you have an easy life” and it’s considered a curse.
It’s a curse because if your life is too easy, if you don’t have challenges, you don’t grow spiritually. Or rather, you don’t have the OPPORTUITY to grow spiritually. The more we resist our challenges, the more they persist, and the less we grow.
So be grateful for your challenges and take the opportunity to learn from them.
Of course, upset and anger is always yapping around my feet like a small dog on a tear. And when the pain is really bad, the dog is always hanging around.
Posted by Sherri at 1:49 PM
Wednesday, February 26, 2014
When I was 11 years old my paternal grandmother was sick with bladder cancer (though at the time I didn’t know why she was ill). One day, a friend and I rode our bicycles to her apartment, which wasn’t far. I was in her bedroom, patting her on the shoulder and telling her she was going to be alright, the way I had seen grown-ups do it. What happened next astounded me.
She held my hands, looked me in the eye and said “No sweetie, I’m not. I’m dying. And that’s okay because it’s all a part of life. I don’t ever want you to be afraid of it”
I don’t think I breathed for five minutes. I was afraid and unsure of what I heard. But it wasn’t death that frightened me. I was wondering why my grandmother, whom I was especially close to, would talk to me like I was a grown-up. Nobody talked to me like that. This was 1964. It frightened me because I knew she told me this for a special reason, I just didn’t know what it was.
As time moved on, and especially now, I have a deeper understanding of why she shared that with me. I was diagnosed with NF at age 11. I don’t know if my grandmother knew specifically about the diagnosis, or if she just sensed I was different. I was sick a lot as a kid, much of it before age 11. So she saw those illnesses and maybe she sensed my physical being would be challenged during my lifetime. Not much was known about NF back then anyway; it wasn’t even called NF. So who knows what she knew. She was sensitive in ways not recognized back then and even now, for some people.
I’m thinking of that now because I’m re-reading books on the soul, as well as ones I haven’t yet read. I’m recalling experiences I have had with the other side and telling myself that there is no way they can’t be real. My experience with helping that woman cross over comes to mind (I wrote about it on this blog…”First Encounter” I think I called it) as well as some other unworldly things that I know was not “swamp gas” (no UFO sightings, just an expression). These experiences all happened 20 years prior to me needing the drugs I use for pain today. Now, I don’t have them anymore. The drugs surpresss whatever gift I had. Not entirely, but enough.
As my NF progresses and it seems to do so daily, I feel life kind of closing in on me and I get scared. And if I’m lucky enough to feel her, my grandmother soothes my fractured heart, my frightened mind and my sore body as she says “…it’s a part of life and I don’t want you to ever be afraid”
The pain is so very bad lately, all I want is to go HOME
Posted by Sherri at 6:06 PM
Monday, February 24, 2014
Okay, I’m back. Lots of pain today, CBD hasn’t done much of anything though I got some weed high in CBD and that seems to help. It just needs to be delivered by smoking it, unfortunately.
The CBD oil I ordered is brown and thick and kind of gross. I’ve tried putting it under my tongue like it’s suggested….but my lips and teeth turn greenish brown and when I brush my teeth, the stain gets on my toothbrush. It seems to work okay if the pain is kind of middle of the road…if I need to go out I like to dose up (when I’m not the one driving) I just tried it again. It’s pretty yukky but if it works, who cares?
I called the library to ask about bookmobiles and it turns out they actually deliver books and CD’s and DVD’s right to your door! Once a month, Books on Wheels will come by with the requested items, which I have always done online. But getting to the library when the item beomes available is a challenge and of course, I need to watch the mileage each month. So I am grateful for this new development.
I need to renew my license plate tags and this year, emissions testing. Not quite sure how I will manage that. And, because I seldom drive, it might not pass the emissions test. Sigh.
For the first time in a while, I didn’t watch much of the Olympics. I was so turned off of ice skating by the way they chose the team (one person skated better than the one who went) that I am no longer interested. I ice skating has been losing a lot of ground because it’s very subjective; even if someone falls they get a pass if the audience likes them.
Vinnie and I are still together though the sometimes monster (biting, torn down a curtain rod with curtain in my bedroom, knocking things over constantly) is definitely on probation. We shall see.
I pray your pain is manageable and you trip here is a happy one, in spite of, or perhaps because of, our challenges.
Posted by Sherri at 10:27 AM
Tuesday, February 18, 2014
Well, the CBD is a bust so far. Big surprise. My pain receptors are full and opioids do nothing so I thought a back door approach might work. Will use what I have left, but the pain is just getting worse and worse. It doesn’t help that a 10 pound cat loves to sleep right on my legs. I told him he could only sleep there is he would heal me. And he’s a whirling dervish in the mornings. Knocking things over and breaking a few. If anyone wants him….(kidding…sort of)
I have been going over my wishes for after I die with my family. Still working on a backup plan if the bio storage thing that CTF is supposedly putting together isn’t up and running. I have a call in to the pain clinic at the U to ask them if they have a body donation program. I just want it to be for NF research and nothing more. And before that happens, I want the traditional Jewish way of watching over the body after the soul exits, for three days (loved ones take turns).
It’s difficult to have these conversations, but necessary. I encourage you to have them with your families, whether or not you are ill, because you just never know what is going to happen and you don’t want your loved ones and or friends wondering what you would have wanted. Part of me just doesn’t care, but I did put a few things together besides what to do with my body.
I’m not sure how much longer I can do this (the blog). I will try, but it’s been getting harder and harder because of the pain and my mental and emotional health. But I’ve enjoyed doing it and it has kept me somewhat sane. If I don’t write anymore, I thank you all for reading and I hope it’s helped you sometimes, in some ways. We shall see….
Posted by Sherri at 7:44 AM
Saturday, February 8, 2014
I’ve been looking at end-of-life decisions lately. My dad, who will be 90 next month, has been going over everything he wants with my brother and sister. I’m not involved because I can’t be there physically. Which means I won’t be able to say goodbye to my dad at a gathering of any kind. And, he wants to be buried next to our mother, of course, in MN. We now live in WA state. This stuff is so hard for me. My dad and I have gotten real close over the last 20 years or so….maybe a lot longer. We talk daily. I know that it’s more important to have a good relationship than it is to just be at someone’s funeral, especially if you are carrying regrets. And a little piece of me has already made peace with it. Still.
Anyway….I’ve been planning everything for myself in my head for a long time and I finally wrote much of it down. One of the hardest questions to answer, one that my brother asked me, was “what my wishes are” for after I die. I’ve got everything in place for before I die in terms of living wills, power of attorney and DNR, but what about after?
And what about after, anyway? Being put in the ground never really appealed to me…probably an irrational fear of not really being dead. And being cremated REALLY doesn’t appeal to me. I’ve been thinking seriously about donating my body to NF research. So I emailed them. I’m already in the NF Registry, which is a great thing to do in the event that some kind of research or clinical trials start because then they have a data base filled with potential lab rats like me. And if I qualify (who knows if it works in reality; in theory, its great) for one of those trials, they have all the information without me having to be aware of a trial….they would contact me.
So I emailed them about body donation and they wrote right back telling me that as it happens, they are in the middle of organizing a “BioStorage” system. She wrote that they get occasional requests for this so that’s why they are working on it. I can’t believe they haven’t before….I mean, what is research if you don’t have the bodies to look over forensically? I just don’t want to end up on an autopsy table for first year medical students. Not that they don’t need bodies as well, for obviously they do, but I lived the whole of my life battling this disorder and if they can find one tiny little clue that may help someone else with NF….I’d like to be able to help.
The way I figure it is that I’ll be done with my body and G-d will be caring for my soul. Why not? Of course, the same fear of “really” being dead applies!
Posted by Sherri at 9:56 AM
Sunday, February 2, 2014
I’ve been investigating cannabis oil with cbd, which is not the same as thc, the ingredient in pot that makes you high. There has been lots of talk lately about cannabis oil with cbd, which has been proven to end seizures and help with chronic pain and a host of other things. Without making you high or even tired or goofy.
I had some weed that had more of the cbd in it and it was great. It really helped with the pain and did not make me “high”. But I’m having a hard time finding it. I haven’t even gone into a marijuana dispensary yet because it is too damn hard to find them and to get there.
It is profoundly frustrating when our government continues to consider cannabis as something worse than shooting heroin, or just as bad. Of course, if people actually started to improve, what would become of “medicine” and the doctors who treat us? Scientists have been trying to “cure” us for many lifetimes, but every time they come up with a possible solution, it is shot down. Think of all the out of work doctors, nurses and other health care professionals if the answers to the most perplexing questions were actually solved. Makes you think. The pharmaceutical companies would rather poison us with man-made copies of the real thing. And charging a lot more.
The pain has been horrific these days. Can barely go out the damn door. Lately the pain has been like withdrawal symptoms; legs jerking around and folding inward, toes curling. I am willing to try anything, even if it kills me. Because I can’t stand much more of this life.
I try, I really do. I think about what my purpose here on Earth is; I try to understand what it is that I am missing in terms of that purpose, and whether or not I am just avoiding some of the bigger questions. But the pain keeps me from considering much of anything these days.
And then, for one or two days, I think I have my gastro issues in check….but I’m losing weight again and there isn’t much I can do about it. I eat. I eat all through the day, small amounts. But pain burns adrenaline which burns calories so keeping it on is impossible. I cannot tolerate any of the drinks with the added calories.
I’m so ambivalent about being alive, I’m sure that’s the crux of the whole thing.
Posted by Sherri at 10:36 AM
Wednesday, January 22, 2014
The tumors in my left leg are killing me. I had at least two things I wanted to get done today but had to ax both of them. I hope tomorrow is better because I actually have four things that need to get done and I was going for two in a day….last week I had something every day of the week. This week….moving is not going to happen. That’s what happens if I push too hard, like I did last week.
Vinnie, my kitty from…not sure where, is getting into everything now that he’s feeling his new “home” is safe to explore. He was sitting in the fireplace this morning. Luckily, I haven’t had any fires so far this season so it’s clean. Just what I need; ash paw prints everywhere.
I’m thinking of calling my pain doc to get the name of a surgeon he had told me about a while back. I just HATE having to see doctors, especially new ones that don’t know anything about me or my limitations due to the pain. They just don’t get that I can’t sit for 30 minutes waiting for them to call me. And getting there is always a challenge because my helpers can’t take me because it’s in a different county. I’m on the border and they can’t cross over. Some will do it anyway and report the miles but not that it was out of county. These two won’t do that.
Wednesday: made it to two stores, sent Hamid, my helper, to get my meds. It’s pathetic, really. My life feels pathetically worthless sometimes. When I’m deep in the abyss, like I am now, I feel nothing but contempt for this world and my being in it. It’s very hard to stay focused and positive when all my available energy goes to dealing with the pain. Overcoming, ignoring, praying, meditating…
And the list goes while the fist goes up as I shake it at the stars that won’t move, not for me, not for anyone, not even for themselves.
I’ve been wondering about something a lot lately. I doze on and off during the day; not sleeping but going unconscious for a few seconds or a few minutes at most. Sometimes my brain is aware that I’ve slipped away and it becomes an out of body experience. Everything is different for those few minutes and when I come out of it, it’s not like waking from sleep. It’s like coming back from somewhere else. Somewhere I can’t stay. Not yet, anyway. I used to have lucid dreams all the time. Before the pills so if anyone thinks my experiences with the dead and with lucid dreaming aren’t real because of the drugs, remember it’s the drugs that killed the ability. I never took so much as an aspirin during those years. Maybe the skill is trying to make a comeback.
If you’re breathing, you have to keep pushing. Those are the rules. Damn.
Posted by Sherri at 1:26 PM
Monday, January 13, 2014
Control. We all want it or think we have it. But in reality, the only control we have is how much orange juice to pour into our glass. And maybe not even that, given the butterfly effect. Sigh.
I was thinking of this because while in mind-numbing pain of late, my brain goes in many directions or sometimes, in one. And lately I have been obsessing about that case I mentioned in the post below. No names needed. Anyway, I was thinking about the child’s mother, and how overwhelmed she must be (to say it lightly) with everyone from lawyers to doctors to the press and the public in general. I do not envy her her situation. But mostly, I do not envy her for the terrible blow that has landed on her poor soul.
And I ask myself this question. Has anyone in her life ever taken her aside, shut all doors and just ask her to tell her/him about her daughter? No mention of tonsils, illness, hospitals, lawyers or anything that led to this horror. Just talk with her about her beautiful daughter with the infectious smile. Omit nothing, Have her share everything she meant to her, still means and what she had planned for herself. Let her talk herself blue in the face, but interrupt any mention of the issues that have grabbed on and won’t let go.
Because in the opinion, and it is only that, comes from someone that, like most people on this planet, knows deep grief of her own, though not the loss of a child,. For me, grieving could not begin until the clouds parted and I saw my life for what it is. Filled with intractable, non-stop physical pain as well as tons of love .For her, she must begin to see that her daughter has most likely moved on. If not, and if you believe in such things, she too is grieving. For her mom. But this should not be mentioned. No guiling, no lecturing, no comparing who is right and who is wrong (because we do not know and I doubt we will ever know much of anything though we think we do) and no talk of anything except her daughter. The one she will love for the rest of her life. She also has another daughter who needs her. I cannot begin to imagine what she must be feeling. But part of it might be some serious questions.
There was this great line toward the end of that movie “Phenomenon” with John Travolta. He had this experience that everyone thought meant he was visited by something from outside our solar system. In truth, he had a tumor that caused the change in him. He of course, fell in love, and just before he died he asked the woman if she would love him for the rest of his life. “No,” she replied “I’ll love you for the rest of mine”
Posted by Sherri at 4:32 PM
Friday, January 10, 2014
Oh man, the pain has been so out of this world I can hardly breathe. I think that losing Oliver is still hitting me over the head and hard. I love Vinnie and he is the sweetest cat ever with lots of kitty still in him. And I do think Oliver sent him to me but I am frightened now of the level of pain and whether I can deal with him long term. Right now he is eating me out of house and home. I just thought Oliver would want me to rescue another cat, like I rescued him. And like we rescued each other. I just thought Oliver would want me to rescue another cat, like I rescued him. And like we rescued each other.
I’ve been thinking about all my challenges and how the worse it gets, the more opportunity to grow spiritually and show grace and dignity. I’m at about 30% in the grace and dignity department. And my computer is going haywire…having a hard time writing this. Yet another opportunity! I do not now, nor I have ever thought I had more or harder challenges than anyone else. I am lucky in so many respects I feel ashamed to complain at all. And yet. But whether the challenge is ours, personally, or whether it involves a loved one, it’s all the same. Rising to the occasion. I just want to rise out of here sometimes!
I have been following that story about the young girl who died (brain dead) after surgery. I had not understood the difference between coma and brain dead until now. That poor child is not coming back to this world from what I understand about it now. Her mother can’t let her go and removed her from the hospital (legal battles will continue I am sure) and found a place through a lawyer (of course) who took her. Feeding tube, breathing tube, dead body. The brain is what tells the body what to do…apparently; in addition to telling me to breathe it tells me to grow tumors. But I digress.
I feel for her mom, I really do. And what do we know, really, about what is to come? Nothing. We know nothing. I read that her case will not set a precedent; they released her on the condition that it read they were releasing a corpse. This is so sad it hurts me to read and write about it. I do so because again, our challenges are for us. That little girl is done with her challenges on Earth. Her mother is not. I pray she can let her daughter go. She will have to, and soon. I just want her to be at peace.
Posted by Sherri at 4:14 PM