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Scarlet Moon

Looking back at 2013. . . wow was it a doozy!! We had a lot going on with our family and I had quite a year from July to now. I had been busy as the summer began with landscaping and then in the blink of an eye, it all exploded! In May my BFF's dad had really started to take a turn for the worse and the week before Father's day, he was back in the hospital and it was touch and go for awhile. I just kept praying that he didn't pass that weekend. He didn't and while I heard he was doing better, what I didn't hear was when they planned to let him go home. It was always contingent on something or another so I had suspected he was either sicker than she could accept. Days turned into weeks and in mid July he passed. I had been busy doing heavy lifting outside and was not feeling well for awhile but assumed it was stress related and really didn't think much of it.

That week in July was awful. The day after my friend's dad passed was my niece's birthday. And while there was excitement that she turned the big 10, it was also a difficult day as Lady, my beloved cockatiel had a stroke. I knew at that moment that he would be leaving me, but my family was not ready for it. We took him to the emergency vet and he had perked up a bit so I was advised to watch him and see. The next day he didn't eat and then he suffered a second stroke that night. The following morning, on Thursday the 18th my sister and I took him to the vet for the final time. It still breaks my heart to think about it. I had spent the night of the 17th with him on my chest, snuggled up in his favorite robe and said goodbye. He was with me for 24 years and I really wished I could have held him as he passed. Due to how they would have to put him to sleep, it was not possible. They usually gas birds for surgery so they gave Lady gas to put him to sleep then gave him an injection to stop his heart once he was sleeping under the gas. Taking him out so I could hold him would risk waking him up and could cause him pain in those final moments, so vets do not allow it.

While it was awful and heartbreaking to have to take that final vet visit, in my heart I know it's what he wanted and that it was the right thing to do. He kept looking at me like "Why aren't you helping me?" And there was nothing I could do. He couldn't stand after the second stroke and all I could do was to give him peace. I loved him too much to let him linger or to face a cruel drawn out death.

I came home from the vet and put myself together because my friend needed me. Her dad died. I won't deny my heartbreak but this was her dad. When I walked into the viewing room, she ran up to me and nestled into the crook of my neck and finally let go. As we sat on the couch and her hot tears fell onto my skin, I knew I was where I belonged. I had not planned to tell her about Lady until after the funeral but her fiancé asked about the feathered kids and once more tears fell. I know she was upset that I did not tell her, but I also know that she understood and would have done the same for me.

I think on that day we both cried for ourselves, eachother, and then to just cry to cry. The following day I went to the funeral, wake and on the way home I saw puddles of water on the road. I walked in the door after a very long day. .and long week. . low and behold. . no power. I just sat on the couch and cried. It was unbelievable bad luck but I was grateful that the storm had not taken down another tree.

The following few days I worked on prepping my yard for a delivery of glass mulch. I was schlepping dirt and doing hard physical work. It was therapeutic and kept my mind off of the past week. It was no surprise I was sore and tired--after all I had a week from hell and was grieving. I came in hurting and just exhausted. I had moved about 400lbs of dirt that day so I really thought I needed a hot shower and to lay down for a bit. I was watching a movie and all of the sudden I started to shiver. I knew that that meant but I was too cold to move so once the rigors stopped, I forced myself to take my temp and it was over 102. I took a few aspirin, called my mom and sister. Told them I had a fever but it was 9pm. I'm taking Tylenol and will go to the ER in the morning. No point in going at this hour when I know I'll be admitted and they won't have a room anyway. It was a great plan until I sweat through several shirts and my fever spiked almost 2 degrees within an hour. Not surprisingly, I quickly changed my mind and went to the ER knowing I was once again septic.

After a week of tests and cultures etc, everything came back negative but I was still fighting a fever. It would break but still hover around 99. I was sent home. I was anxious to go home as my glass mulch had been delivered and I was anxious to finish my project. I went back to life as normal as possible and I got a phone call telling me to call the floor doctor. I was unable to contact him as was my family doctor. when I went in for my follow up with my GI I told him I still had this lingering fever and that the hospital called and said something finally turned up on the culture but the floor doctor told me he could not disclose what that was. Honestly, I tried to pull it from him. My GI sent me to ID. Got me in the next day I think. I saw the same doc I had seen in the hospital for ID. She flipped through the chart and was furious that they did not call her to tell her that the cultures were positive and not only were they positive, they were positive for acinteobacter. I think I might have spelled that wrong. . .but it's not a concern. What WAS a major concern was that I was very sick. Once more I was sent to the ER. This time with a note saying I was positive for acinteobacter and that I was to be place in quarantine. I spent another week in the hospital. This time they removed the port and we did the whole 9 yards again. I was one sick gal.

When I came home, I had a message from Facebook from someone I dated years ago. I don't use facebook so I was really surprised to see this contact but I really had no reason to avoid it. I responded after a few days of thinking about it--I flat out asked him what he wanted. Turns out he's in the middle of a divorce and he wanted to start to get to know eachother again. Chris and I dated over 20 years ago and the last time I saw him, he and his wife were having difficulties. They were separated but had kids so they worked it out for the boys. Since then, they added a daughter to their family and a lot of resentment. He has full custody of the kids and we have been dating since September. The divorce will be finalized in a few weeks and for now we're taking it slow. There's a long way to go before meeting the kids or remeeting the family. . .. If you asked me 22 years ago I would have laughed at the thought of us being more than we were. But now it just feels normal and right when we're together. Like we've been together 22 years. Very odd and welcome. I'm anxious to see where the new year will take us but am enjoying the ride.

I also found out that there was still an energy credit for windows for 2013. Extended through 2013, actually. I had planned to replace the windows this spring but things fell into place and that is happening now. I had my patio door and entry door replaced yesterday. The new windows come next week. I'm really excited for those to come in. My windows are the original 40 year old windows. They're all being replaced with highly energy efficient windows. The house will have a completely different look with the casements verses the single hung and sliding windows. And be warmer. A lot warmer.

Grandma just went back to Florida yesterday. I won't go into that cuz it's a very long story. It's been a very busy year.

As I bid 2013 adieu, I raise a toast to the new year and look forward to a year of new beginnings. Happy healthy new year to all.

Scarlet Moon

It seems like the past two weeks all I have heard has been sad news. Needless to say, Sue is on my mind. She was very open and knew she had limited time left on Earth and I think while you know that is true, you don't realize how quickly time passes. We get wrapped up in our own lives--either dealing with the day to day, or our own issues--and before you know it those that we love and care about slip from us.

A very close friend's father has been slipping for the past year or so. Last week he was back in the hospital with the same elusive symptoms. Many tests have been run and it sounds like they have a treatment plan or a plan of action, but I have my doubts. There have been treatment plans made and changed and I think there's so much hope that this will "fix" him, that denial has crept in. They did give him a feeding tube and being able to get proper nutriton may help, but my heart tells me otherwise. I hope my heart is wrong.

Last week, my great uncle passed. It was truly a blessing. He had been in Hospice for nearly 3 years and he suffered. He looked like he was in pain the last two times I saw him. . . I think the last time was a year ago or so. Yesterday they had the viewing, memorial service, military honors and then dinner. It was a long day. The service was nice and my aunt seems o.k. She's 94 I think, and my grandma's sister. She looked so frail and I know her heart is bleeding and will for awhile. They were married for 65 years and attached at the hip. It's one thing to know that he's dying, but because he was still at home, he was still part of the family--and there. Now that his physical presence is gone it's hitting her hard.

The service was nice, and I was sitting one row behind my aunt and one seat to the left. I kept an eye on her for much of the service. Her whole body shook with silent sobs and it broke my heart. I wept for her and her loss. Yes, she had 3 years to say her good-byes, but time slips by. It becomes normal for him to be physically there and occasionally respond. Life changes and while you know that time is slipping by, it's hard to acknowledge that when someone is physically there and unresponsiveness is normal.

There wasn't a dry eye when the Marines gave their tribute. My dad broke down--started to sob. I've never seen my dad cry like that. I didn't want to draw attention to it. I was sitting between him and my mom and I just reached over and held his hand. He squeezed me and it was an unspoken moment. That made me cry more. My dad had a massive heart attack 4 years ago--on my birthday of all days. Worse birthday I've ever had, but he's still here so it was the best gift I could have been given. I don't know if it was the situation or realizing that we could have been watching his military tribute. To be honest, it doesn't matter. We just sobbed and shared a special connection. As they played Taps, I don't think there was a dry eye among us. When the Marine gave my aunt the flag, she was a little hesitant to take it. He was young, 25ish. No older than 30. When she reached out to take the flag, he gave the standard speech then slid it between her hands and held her hands for a few seconds as he kinda placed them on the flag and whipsered to her that God blessed her with a beautiful family and with her permission he would like to pray for her and her family. It was a genuine act of compassion and very touching to see that amount of compassion for a stranger. My aunt is very religious and I know that small act of compassion meant the world to her and at that moment it was exactly what she needed.

Truthfully, she won't remember most of yesterday. It was overwhelming and will be a blur. She probably won't remember the Marine's face or his compassionate words. I doubt they were meant to be remembered or even heard by anyone else--but they were and for a moment all of the sad news of the past two weeks slipped away and I couldn't help but to feel renewed faith in humanity. Then in a blink, my Reiki training kicked in and I felt the overwhelming emotions in the room. As an emotional empath I feel the emotions of others and it drains me. I have to put up a protective sphere of white light for protection in highly emotional situations and I was surprised that it broke. I was even more surprised by what I felt. Yes, there was a sense of loss, but there was so much more love that it shocked me. It wasn't the love of the Universe or the universal life energy or God to some people; it was a different type of love. When you connect to the Universe, the love is an overwhelming sensation but it is unique because it feels as if your body is melting and becoming one with the energy around it. The sensation of a physical body ceases to exist, you feel love and peace, then you see and feel the energy in everything and understand how we're all just a brushstroke in a painting. Yes, if you look close enough you could identify it, but in reality it is essential to the rest of the painting and it melts into the picture. This wasn't that kind of love or feeling. It was as if it were being showered on me and erasing the sorrow. For a brief moment I saw Uncle Frank smile and heard his laugh. I thanked him and felt his spirit join us as we saw his physical body for the last time. As we filed out of the room, I couldn't help but to smile. Great grandbabies far too young to understand death were being packed up to go to the restaurant. Uncle Frank does have a beautiful family and his legacy lives on.

Scarlet Moon

It's been a miserable week and a half with sinus nonsense but last week the migraine hit. 4 days with a sound,light,and smell sensitive headache was too much and I broke down and went to see my family doc on Monday. He wasn't in-- and I saw one of my least favorite doctors at the practice who confirmed what I already knew. . . the mother of all sinus infections. When the migraine moved from just light to sound and smell, I knew it was a sinus infection, not just weather.

I have been going to the same practice for about 20 years and Dr. P's a newer doc. Odd fellow but nice. I explained the situation and he didn't understand that I had an IV port. Not unusual for me to have to show it and re-explain that I have short gut syndrome and antibiotics tend to come out the same way they went in. I always go on IV antibiotics for a shorter duration. There's a ton of records in my file of this as well as scripts for it. He explained that the computer doesn't allow him to write it so he can't. If it's not in the database, it's not something they can write. What??? I'm a seasoned patient. This was not a new invention or a new drug, or a new concept. He did look at the chart and found multiple scripts for it, and after some fussing around with the computer, did find it and was able to write a script. When I asked what to do about the migraine, he told me to hold on and that it will clear up in 3-4 days. 7 at most. If it doesn't clear up in a week, come back. Uh.. no. I'm a frequent flier with sinus migraines and know as soon as they hit a certain point, they're not clearing up. I took everything over the counter including my go to always works, Hyland's Migraine with no success. It was time to call in the Imitrex. He again looked at the chart and saw that I wasn't trying to shop for meds--why anyone would shop for Imitrex is beyond me.

It was a bad one, and it took 2 doses to clear most of it. I still had a bit linger, but it wasn't bad enough to take a 3rd dose. I'm still dealing with a sinus headache but have kept it from going to a migraine with Excederin.

Today the sinus dam broke. I took my 5th dose of Cipro and the sinus dam broke. I am going on my 3rd box of Kleenex today. Crazy that all that mucus just started to gush at once. My nose and lips are raw. I'm coating it with vaseline so when I wipe it doesn't rub against the skin. Later tonight, I'll put some quality cream to help it to heal, but at this stage, Vaseline seems to work best. I'm hoping it slows down a bit before bedtime. Been a busy day. Went grocery shopping, crashed my computer and am now leaking non stop. . . I think tomorrow my butt will become one with the couch and we'll go from there.

Scarlet Moon

I don't even know where to begin so I'll just dive in. On Tuesday a guy I dated a few years ago stopped by. We've remained friendly and would say hi every now and then. We realized when we were dating that we really were not a good match for eachother. We have similar interests but he would like to be a dad and I have no desire to have kids. I cannot have kids so it has never really been an issue for me. I had had surgery about a year before we met and was struggling with my body image and sexuality with a stoma. We were attracted to eachother and Brian became my lover for awhile. I will always be grateful to him for reminding me that I am a woman with a stoma, not a stoma with a woman attached.

When he found out I went into renal failure and ended up back on the IV nightly, he didn't know what to think. I think he can't wrap his head around the whole situation because he really hasn't been around me while I'm getting my fluids. . or long enough to understand that I'm not home bound--or dying. We lost contact for awhile. I think he called a few months ago out of the blue, then called asking if he could stop over on Tuesday. He was nearby (he lives about an hour from me) and just wanted to pop in for a bit. .

It was a nice visit. He stayed about 2 hours. There is still chemistry between us, but we were both trying to read the other so it was a little uncomfy. I cannot deny that I enjoyed his visit, and it was good to see him. . . until I saw the way he looked at my box of IV fluids. It was a look of saddness, sympathy, and confusion. It was a reminder of reality and I struggle with someone looking at me like they think I'm dying. I'm not. I can't deny I'm not well, but you can still be ill and have quality of life. Some days are better than others and you can be very healthy and not have quality of life just as easily as someone who is ill.

When Brian left, he gave me a hug and held me a little closer than a friend would, and far longer. I can't say I pulled away or tried. When he left, he left me reeling wtih confusion. I felt a little relieved that he didn't assume he could fall back into a position of being lovers, and I have to admit that part of me was expecting to have to discuss not going down that road at this time. What I did not expect was to feel so--- I can't really put it into a feeling or even a word. I just realized that I missed a man's touch. Granted he didn't really touch me, but I miss the physical intimacy of a relationship. I miss being held close, I miss feeling someone's arms surrounding me like he's protecting me. . there was this part of me that had to step back and ask if it was Brian's touch or touch. I realized I missed a man's touch. . . yet I don't have the energy to put into dating nor the desire to deal with the creeps. I haven't thought much about my relationship needs since Brian and I drifted apart and to be honest, I didn't expect to have any feelings of seclusion pop up and having them threw me for a loop.

After spending some time trying to sort it all out, I confirmed that I am comfortable with my current relationshipless status. I've done the Internet dating thing and wow. . it's frightening.

I like being single, but then I get these reminders of basic needs that I miss more than I think. I can't say I'm opposed to dating, but I can say that right now, I just don't want to. I'm not going to worry about what ifs, and if something happens where Brian and I slip back into bed. . well, so be it. Knowing Brian and myself and our past, we both are aware of where we stand with eachother so there would be no one hurt. Besides, maybe it would do us both a world of good. Time will tell.

Scarlet Moon

I've been on the additional dose of Paxil for about 3 weeks now and I think I'm back to normal. It feels good to finally be back in a position where I feel normal again. I'm busy doing some spring cleaning and that's helping too. As silly as it sounds, keeping busy has been quite a help. I'm doing stuff around here for me, not to just pacify the time so that makes me feel productive again and I need that. I was also asked to do pre-launch testing on the social groups. There's a lot to learn and it's exciting to learn new skills and to try to figure things out. I'm glad that I can help out before they go live. This site has given me so much and it's the least I can do--besides I'm enjoying it.

A friend gave me her hubby's working novel to read. It's a vampire thriller. Not something I'd typically read, but it's pretty good for a first novel. I still have more than half to read but at this point, it's pretty good.

I'm also enjoying my book on quantum theory. I do think that the book needs some editing. It is written in techinical writing so it's repetative by nature, however there are a few paragraphs repeated as if they were cut and pasted. I think it could easily drop 100 pages to make it more readable. Right now it's in a section where it's proving that all religions are valid as Consciousness/God exists. I have some issues with the way he treats faiths that are not Christian based. He is quite arrogant and talks about how new agers are staring at crystals hoping for something but not really wanting anything. I think that's an unfair assessment. Even a bit arrogant. He chooses to exclude pagan religions yet focuses a lot on Athesism and delights in proving that they have to believe in a God figure. If you're going to try to prove all religions are valid, how can you pick and choose to only focus on religions that stem from Hinduism, or was it Buddhism and Judaic origins? It seems like a cop out to not embrace his goal in proving all religious beliefs are valid if he ignores some. I'm getting a little tired of reading the same thing over and over so now I'm skimming until the next section. I did that at the end of the last section too. When he gets near the end he seems to feel the need to summarize it 3 or 4 times before moving on. It could be editied out. :) Oh well, onto the next chapter, right?

Scarlet Moon

Busy week. Today is the first time this week where I didn't have to go anywhere. Plenty to do. . starting with laundry and I still have to clean and pack up Sasha's travel cage. . AKA Jasper's visiting cage. Saw my doctor and we upped my Paxil a bit. I actually upped it last week and started sleeping better within days of taking it. He agreed that was a good move and if things don't improve in 2 months or so then I need to go back and we'll tweak things. I feel defeated. I think some of it was hearing things aren't going to get better, then the catheter breaking on Sunday and the surgeon being a dick on Monday. I just have felt frustrated for awhile but it seems to have crossed over into defeated about a week or so ago. It's been a long time since I've felt that way. So I'm going to putz with things around here that need to be done and see if maybe I can distract myself for awhile while the meds build up and kick in. I also decided last week to start shutting off the computer and TV. I usually have both on and decided to unplug for awhile. Maybe that will help with the odd sleeping habits too.

Scarlet Moon

I started this amazing book on quatum physics. I have to kinda lay out where my strengths and weaknesses in science are before writing about the book. Science comes naturally to me, biology and geology. . anatomy. Breeze. Chemistry was hard because of the math. . and I don't handle much beyond x+2=3

I taught English for a reason! lol! I never thought I'd understand quantum physics and I have to say it's fascinating. It is so metaphysical and completely beyond what I expected. There's a lot of philosopy in it too. I'm stunned that I get this and that I'm excited about it. I'm reading a book now http://www.amazon.com/Quantum-Physics-Experiences-Consciousness-Religion/dp/1478176431/ref=sr_1_8?s=books&ie=UTF8&qid=1361238321&sr=1-8&keywords=quantum+physics where the author is using quantum physics to talk about religion and the afterlife.

It's a hard read because it's technical writing. It also needs to be edited. And the guy gets moments where his ego takes him off on tangents and does a little scientist bashing. Not in a debate type style, more like just flat out saying they're idiots. At any rate I'm getting to the point where it's talking about NDE--near death experiences-- and his theory is that the tunnel in a NDE is a wormhole. that's an interesting concept. He also points out that since the human brain has no location for consciousness, that essentialy we cannnot truly exist on this plane so we exist elsewhere and when we experience a NDE, this wormhole is taking us back to that location where we truly exist.

Considering I've had OBE as well as NDE, I find this fascinating. I know that there were times when I was not in this body. I also know that after the last three surgeries I was in a different location and would check in so to speak with this place. The last two surgeries were a doozy and both times I was in a room of nothingness for awhile. I was told I wasn't allowed to open the doors--not that I could see them--and I would be told when I could go anywhere. I know that beyond that door was space. It was breathtaking to see the stars and planets, but I also knew if I opened those doors I had to leave and could not come back to this room. I wasn't being punished or making a decision. I was told it was a place to heal. I'd come to for awhile, then go back into the nothingness. It was soothing to be there and I found comfort in the room. As I started to be well enough to leave ICU, I started to sleep and have dreams. The room just kinda disappeared. I had wished I still had the option to go there. I didn't feel ready to leave it. So considering the wormhole theory and the idea of consciousness, it would seem during that time that I floated in a place where time did not exist, pain did not exist, was I visiting my actual consciousness and actual being during the times when my physical body needed to heal?

Interesting stuff! It really makes you think about the universe we live in. It's also very metaphysical and that surprised me. I've only read about 1/3 of the book. I think it's about 500-600 pages, and he still hasn't hit on religion or multiverses or the soul. I"m sure my thoughts about my darkened healing room might change as I continue to read more of this book and more on the topic.

I never would have thought that quantum physics is so easy to understand. I get the concepts, I skip the math. I don't get it anyway so looking at an equation means nothing. I get what he says the equation means, but not the actual math. Never in a million years would I have thought there were relationships between quantum physics and metaphysics. That totally blows my mind and makes me curious to know more!

OMG--I just read this before hitting post. I am such a major geek! Oh well, it is what it is.

Scarlet Moon

Yep. . another ER visit last night. I went to flush my IV and the next thing I knew, I had a wet pajama top. Wonderful. This time there was a little hole but they still had to cut off about 3" of catheter then reconnect it all.

I saw the surgeon today and he wants to wait to remove it. I'm concerned that it might be faulty. Two breaks in 6 weeks? I've had 4 of these things, not one sprung a leak. His logic is hard to disagree with. I have not gone 9 months without having a catheter infection. I'm about 6 months in on this one. He doesn't want to take it out to put a new on back in if I go septic in a few months. Granted, no one wants to do that but he's right. He also said it looks like there's enough line to be repaired two more times. At least one--depending where it breaks. IF the catheter if faulty then it will go bad in time and need to be replaced. There is little risk that it will break off in the veins because it is bathed in fluids and that causes it to stay supple. Cleaning it with the Chloraprep doesn't help keep it supple, but it's the best way to clean it and the way I was taught to do by Cleveland. Not to mention, my homecare nurses. So I'll keep doing as I was taught. Hope I don't go septic and hope the line doesn't break.

Aside from that, I'm just tired.I've been spending less time on line. I need to start unplugging at night and right now that means shutting off the computer and the TV and winding down a little earlier. I'm hoping to get back into more of a routine and hoping if I do that, then I can get back on a normal sleeping schedule. Time will tell.

Scarlet Moon

I saw the urologist yesterday and she released me!!! I did not expect that. She tested the urine and it was perfectly sterile. The ultrasound after showed an empty bladder. But that's not surprising cuz the infections start in the kidney and then go septic. She was floored and angry at first when I told her Dr. Topf put me on a water pill. Stopped typing in my chart, looked up and said, "He did WHAT!" I imagine she had the same look on her face as my mom did when I told her my kidney doctor's putting me on a water pill.

I just asked her to let me continue and explained that he put me on Rx potassium chloride, and some of my electrolytes are being tweaked as needed. That's a daily thing sometimes. Her demeanor changed, she broke out in a smile and shook her head. She said "Joel is a genius when it comes to fluid (IV) patients. No sane urologist would have ever recommended that to lower the Rx induced blood pressure, nor would any other doctor". She swas kinda talking to herself when explained that it was simply "genius" to force the kidneys to kick out the excess salt from the IV fluids, to replace the potassium and hopefully even raise my potassium levels. It solves the problem of the kidneys shutting down by forcing them to push out salt, it lowers the blood pressure due to the excess sodium and the postassium helps lower it a bit too due to the sodium-potassium pump.

So after hearing that, she told me that she did the tests as Dr. Topf requested, there are no physical defects in the bladder and we know that the kidney infections originate in the kidneys. There is no reason for her to continue to see me when he has it under control. I have not had a kidney infection in about 6 months, maybe longer. She said she feels she will be standing in his way and that if I need her, call. Otherwise good luck! It's exciting to cut one doctor off of the never ending list.

I see my GI on Monday for our status quo update. I expect the exact same reaction from him when he finds out that I'm on a water pill.

It's been a long time since my last entry and it's just been a bit overwhelming for the past 2-3 weeks. I've been in quite a funk, well that's not true. I've been quite frustrated. It's the stagnation issue again. I got my yearly letter to verify that I am still eligible to be on medical retirement. The disability fun will come later. I get so frustrated when I have to fill out this form and re-live all the nonsense of the past year. List all my hospitalizations, surgeries, so on and so forth. It's depressing to look at somthing and see that once again I was sick all year. I had a kidney infection from Jan to April, then it came back in June and went septic. Another 10 days in the hospital, more surgery. . . limitations. . There was not a single month last year where I didn't have some sort of medical issue. Even after the IV port was removed and replaced, I ended up with a cold or flu that I could not get rid of. I even started this year off on a brilliant note--not even a week into the new year, my IV line split and had to be repaired. I'm hoping this will be it for awhile.

My energy is still low. I finally got a Rx for B12 injections. I called 2 weeks ago and no one had any in stock yet. With any luck someone will have some. The sublingual aren't enough and they make me jittery and on edge. That doesn't help the situation either.

This March will be my 5th anniversary of closing on my house. That means I've been out of work for 5 years. I liked working and I miss it. I miss having deep discussions with some of my colleagues, the socializing, the feeling normal part of it. I'm not very productive and I don't have the energy to be productive.

I used to use my brain far more than I am. Buying the Kindle has helped with that a bit because I'm reading more. It's nothing for me to read 20-30 sample books over a day or two. I haven't found anything I want to dive into. Although I was watching Ancient Aliens yesterday and they were talking about string theory and the concept of a multiverse. I downloaded a bunch of samples to see which is best. I might delve into something like that. Then again I downloaded a few books written by Stephen Hawking about the universe and maybe those would be a good place to start. I want something that will make me have to think and make me rethink about how I see the world. String theory might do that. Maybe some of the brain cells that just haven't been used in awhile will start to light up again.

About 4 weeks ago, I started to get back into crystal meditation and to fall back into my metaphysical self. I'm comfortable there, and have greatly missed my healing stones and judging by the way they're reacing to my energy, they've missed me too. I've been sleeping on the couch cuz I sleep so deeply in my bed that I don't wake up and my bag just overfills and I leak. My crystals and healing stones are in my bedroom, my metaphysical sanctuary. I'm bringing a few down here and starting to scatter them through my home.

I'm also thinking of going back to vegetarianism. I can't take the smell of meat anymore. I know this is cyclical for me. And every few years I go through this phase where walking in the meat section of any store makes me want to vomit. I can smell the blood an iron and it makes me sick. I've always been that way with seafood but the meat comes and goes. As it is, I'll rarely eat pork due to the smell. Occasionally, I'll have sausage or bacon. Ribs maybe once a year. It smells like when I had to disect a fetal pig and makes me sick. Chicken is ify. right now I can't stand the smell of it raw. And it wouldn't be so bad, but as it cooks, I get more and more nauseated. I don't mind the smell of it cooked, but it might just be a matter of time before that puts me off too. I am o.k. with cold cuts. Maybe it's just the raw aspect that's causing the issues again. I started to stock up on the beans and read up on the nutritional aspects. I haven't been a full vegetarian in about 7 years. I didn't have a stoma back then, but considering everything passes out so fast as it is, I highly doubt much will change for me, but I do plan to talk to my GI about it. He was o.k. when I stopped eating meat before--but I was stomaless. I don't need to cause more problems for myself either. I saw a book about being a week day vegetarian. Maybe that's a good idea. I'm not eating it cuz it puts me off, but maybe I can tolerate it two days a week? I suppose time will tell.

Scarlet Moon

Once again Squirt pumped out enough gas to plump up my bag to near bursting and I woke up sprinting before leaving a trail of shit. I have gone through a full box of wafers this week. I fall asleep for more than 2 hours and liftoff! Then twice I just filled it up so much that it had nowhere to go except under the wafer. I seriously think that I could create my own power supply. Crazy. The odd sleeping patterns aren' t helping. I' m not up cuz I can't sleep. i'm up cuz Squirt started to gush after I changed him. If I go back to bed I'll just wake up covered in dookie. Then I' ll get a nap mid day from exhaustion and be up until 3 again. I need a B12 shot and there's some manf problem. 6 weeks on sublingual now and still can take one and go to sleep. 1500mcg twice a day should do more. Nasal spray has mixed reviews and I can' t justify dropping $100 for a single month supply to see if it is slightly better than sublingual.

Have to go through email too. Over 400 messages that aren't crap. I have to install Win 8 again. If i don' t register by the 31st, I lose my free upgrades. feels like I' m being forced into it and that's just shitty. They did fix the cursor jumping so that should help. It's why I put 7 back in.

Well I just felt a gush so maybe Squirt is done for a bit. Apologies for typos-- on the Kindle. Laptop claims issues with connecting. If I owe you a pm or email. I' m sorry. just behind with everything.

Scarlet Moon

back home

Thanks for all the love and concerned sent my way. My family lives near by but it takes homecare an hour or two to return a call so there was no need to call and get anyone riled up to wait. Besides, my dad is an early riser and when I called him around 7 or so, he had been up for hours. We got to the hospital and after a surgeon looked at the line and deemed it broken, he sent his resident in to "MacGyver" it. He had never seen one or placed one so I explained the parts and how they do the surgery. Offered to let him see it on YouTube. .he passed. He could see what needed to be done. So they cut the line below the blow out, separated the hub and collar from the broken section then replaced the hub and collar on the new cut.

About 5 or 6 hours had passed at that time so I insisted they run TPA through it to break up the visible clots that looked like a solid clot. When they tried to draw them out, they couldn't. TPA had to be worked in as it dissolved the clots in the line. Finally it was able to be flushed to the end. About 20 minutes later they drew it out and there were no clots in the 10cc of blood/TPA mixture so it was flushed with saline and I went home. . and took a nap.

I wasn't too concerned with if it could be fixed. I had sat through training with Cleveland on what to do if it broke or sprung a leak as well as what they can and cannot repair. My concern was that the clots could have damaged the catheter valve making it unusable. That would have ended up with it having to be removed ASAP. It goes into the superior vena cava and the tip is millimeters from the heart. . needless to say I was more worried about clots breaking off and being pumped elsewhere. . . But that is averted and hopefully won't be an issue in the future.

Scarlet Moon

Woke up with a little bit of blood in my IV catheter again. Not really sure why this is happening, but I did what I was taught. . draw back a bit to clear any potential clots (Lactated Ringer's has calcium in it and can cause blood clots it has long contact with blood). . it looked good. . no clots.. .just blood sucked into my syringe. So I took my saline flush to flush and the next thing I know I'm wet. . and bloody. . and a little confused. . so I gently push my flush and see the leak. . lovely.

I'm waiting for a call from homecare.. why I don't know. I know that they're going to send me to the ER for this. All that has to be done is for the line to be cut and capped below the blow out. So instead of getting dressed and getting the feathered kids up and ready to spend the day alone, I'm putzing with my email, reading some news stories, and blogging. I figure the damage is done. I have it clamped with a plastic hemostat. . it's not an open line now that it's clamped off. . and I really don't want to call my dad yet. I'd go alone, but since I don't know what they'll end up doing, it makes more sense to have someone go with me. I see no reason why they'd keep me. I'd fight it. I see no reason to remove the line. I know it can be repaired from the troubleshooting booklet and Cleveland's mammoth catheter care binder and training. . . they are the folks who gave me a plastic hemostat to clamp off blow outs and save the line.

I hope this isn't an indication of how 2013 is going to be. . . oh.. .phone..

Go to ER. Damn. . not really a surprise. Well, time to wake the feathered kids and get a move on it. Maybe if we get there by 8, we won't spend all day there. . . still I'm going to pack some ostomy supplies just in case. . .

Scarlet Moon

Happy 2013 to all. I am a little shocked as to where the last 3 months went. It seems a blur. I had intentions to post more often, but they were sidelined. I ended the year with some bug and am starting the new with a bug. . .I hope this isn't an indication of what the year will bring. I think I've had this bug since before Thanksgiving and just haven't fully recovered. I get well enough to feel normal, then get run down again and end up with another fever and case of barfing and the shits. Yesterday just before the family came over for our gathering, I started to dry heave. . .dry heaved so hard that I sprayed mucus all over my sweats. I could not believe I "shit" myself. I got dressed and puked a few more times over the evening. Everyone enjoyed the soup and sandwich spread and poker. I drank some ginger ale and fluctuated between hot and cold sweats. Everyone left about 7 and I think I crashed by 9. The nieces and nephews were getting tired, my mom and grandma had an early flight today and my dad was just beat. Today, I've done nothing but some light laundry and run to the toilet. I'm pumping out about 400cc every 30-45 minutes. I can just feel and hear the gush--fills the bag in one gurgle. It's o.k. It needs to flush out.

I'd like to say that at this moment I have some profound words to say. . but I don't. I'm tired. I ache and am going to take my second handful of Lomotil and hope for the best. Maybe by 11, it'll slow down enough where I can actually sleep.. . maybe.

Scarlet Moon


I think my bout with an odd flu is finally on the way out. After nearly a week of sleeping, sweating and sleeping some more, I woke up yesterday feeling pretty good.. . actually ate something more than crackers. I'm down 6.5 lbs . . and that's not a real worry since I have that and more to spare. Besides I'm sure I'll put that back on making Christmas cookies. So now I'm still trying to shake the sleepy feeling and start to get back into a normal routine. . . lots to do this week. Doctor appointment on Weds, hair appointment on Friday, cookies to make this weekend. . . and I have to admit that I'm still dragging ass. . . .

Scarlet Moon


After two busy days, I spent the better part of my day on the couch--sleeping. I hate this. It's not a need to rest, it's a need to lay down or collapse. One way or another, I'm going down or out. So now that I've slept all day, and took another nap from 6ish until almost 8pm, I'm sorta up. Waiting for my first round of IV fluids to empty so I can swap bags and call it a night.. .again. Sigh.. so much to do around here and it just doesn't get done because I get so worn out so quickly. Some might be the dehydration issues and I honestly don't know what the nephrologist will do on Weds. Part of me hopes he takes me off the chlor something or another and the other part doesn't. It's doing what it's supposed to do.. . . keep me peeing. I'm peeing. And as long as I'm peeing the bacteria isn't lurking in the kidneys. It would be easier if things started as a bladder infection. At least I'd have some warning before the 105 temp and blue lips strike. . . but I don't. And if the kidney infections don't start then I don't go septic. My grandma will be here in less than 2 weeks. . . I just wanted to feel half way decent to be able to take her shopping or to visit family with her and my mom. Doesn't seem like tis' a hell of a lot to ask but I should know better and that with bowel disease even asking to sleep for a solid 2.5 hours is unreasonable. The last time I slept through the night was before surgery in 2010 when I was in Cleveland a week prior to surgery and on NPO for 4 or 5 days. The bowel shut down and it was the first time since the previous failed surgery that I had slept for more than 2 hours at a time.

My niece had a good time at the vet. Monkey is a perfectly healthy stuffed animal and got a bandage on his tail and a toy for being such a good monkey. Sofie was thrilled and I think she enjoyed going. Sometimes she's hard to read, but she showed Lena Monkey's special bandage as soon as we got home so I think it was a good experience. I should call my sister tomorrow and see if she said anything about going.

Sasha is healthy. hard to believe a year ago she was so ill. We go back in 3 months and he'll check her cone to make sure it's still a good fit--not choking her--and to do the beak trim. She can chew wood. . but sofar the only wood she WANTS to chew is the wood on my wall. It's real wood strips that have to be oiled every so often...no paneling or laminate crap. That she likes. . . and t-shirts. But t-shirts don't actually do a damn thing to wear her beak down and she's not chewing on my walls. . no matter how much she likes them. I hung a piece of molding where she's tasted the wood and it has made her lose all interest in chewing it--for now. I hope forever but at least for now I don't have to worry about her destroying my beautiful wall. She's been attentive to my "nap" episodes lately too. Flies down from her stand to come and preen me awake. It is a little freaky to wake up and feel her preening your eyelashes or eyebrows. . . but she's doing it because she's protecting me. Lady did the same thing too and will still do it when his legs aren't sore. Since he doesn't fly it's a lot more work for him.

As you can see I have nothing of any value to blog about today. . .and it looks like my IV bag is ready to be swapped. So I can once more, go back to sleep and hope that tomorrow will allow me to be somewhat productive. . . or at least let me run an errand or two. ..

Scarlet Moon

Once again reality kicks me in the ass. . . . got my lab results and not surprisingly, I'm dehydrated. I don't know what the levels were last time cuz I don't have a hard copy. I can't compare how much more dehydrated I am, only that two tests confirm it. One did last time so that's not a good sign. I'm not surprised and expected it. The exhaustion to the point of fallng down is back and so are the nose bleeds. For me, they tend to come with low B-12 levels or dehydration. The humidity is 75% in here. . sure isn't cuz I need to add moisture in the house. I just took a B-12 shot yesterday, there's no reason for a random nose bleed today. . . except dehydration. I know my body. . I'm pretty accurate with knowing what's really going on by my symptoms.

But again, the real issue is preventing another kidney infection. I'm on a medication that forces my kidneys to keep working which means I'm peeing. Not a lot, but I'm still peeing. . . and that helps to remove the bacteria. . .and prevents the kidneys from shutting down and me sliding into renal failure.. . . again. If that happens, it's a guaranteed kidney infection and a guaranteed bout of sepsis.. . and saves me from having to hear how I ruined Christmas.

I see the nephrologist on the 12th. . 2 weeks. . and I don't know if he'll want to take me off of it. Which is the lesser of two evils, allowing me to be dehydrated a bit. . I can't add to my fluids. . .or the kidney infections which always go septic? It's the sepsis. I feel like I"m in a catch 22 and there's no real good answer to it. I'll find out more on the 12th.

My mom brought the nieces and nephew over after school today to play. buggers had a half day for conferences. They had a blast and played really nice together. David didn't even go ballistic when he saw that Lena had dressed up his alligator in drag.. complete with a little pink purse and purple wig.

I missed my 1-4 nap and am dragging ass right now. So I think I'm going to change into some PJ's and get the IV started. That way if I go out, it's already in and I won't be late with it tomorrow.

Scarlet Moon

Thought once the barfing stoppped I'd be out of the woods. . I was wrong. Yesterday I cleaned the birds cages. . not a good cleaning, just removed poopy papers, used the poop off wipes along the edges and vac'ed. slept another 4 hours after that. Ate some cereal and collapsed again until about 10:45 this morning.

I'm worried though. . . I'm feel dry. . my eyes are sticky and painful. I think some of this is good old fashioned dehydration. I see Topf in about 2 weeks, but the labs aren't back yet. I have a humidifier and it's on. . .I keep it a swampy 75% humidity in here for the birds. . so it's not a matter of the change of seasons. If I add more moisture, it rains in the basement.

Well, no time for that. . I have to get dressed and pick up some eggs and milk before my afternoon collapse. . . if the feathered kids don't get the daily hard boiled egg, it gets ugly. . . and I cracked the last egg this morning. . .

Scarlet Moon

Bootie bags

Nope. . not a post about ostomy bags. . bootie bags. . .purses or totes made from the top part of jeans.. . my 9 year old niece came over after school and we cranked out 4 bootie bags. All the cutting was done for her and the pinning was too. It was just faster and easier for me to get it ready to go and have her whip them out. She did a good job and I'll post pics under "Bootie bags" in the gallery. When I posted asking about easy sewing projects there was some interest in the bootie bags, It's a super easy project and makes a sturdy bag. We made them larger. . so I bought jeans that were 14/16 or so. I'm so picky about my purses. .but can always use a tote bag or a bag for groceries.. . so I decided to go with a larger tote size. I know my family's gals are pretty set on a purse too. Lena is pretty excited that she has a new sparkly "duffle bag" and showed it off at karate tonight. That was cool to see. She's proud of it and should be.

I also heard my 4 year old niece helped my mom do some actual sewing. Helped her push a needle though something. So she said she wants to sew too. . and I told her as soon as her foot reaches the foot pedal, she can help. I stared Lena off when her blanket's binding needed to be replaced and she was in charge of the foot pedal. She had to stand on it with both feet to get it to move. . then after awhile, she sat on my lap and "helped" hold the binding. I'll have to keep an eye out for easy projects to keep the interest there. I learned at my grandma's knee. . but by time I was Lena's age, I already knew how to crochet and do needlepoint. . hook rugs. . uh. . even embroidery. I never really had the fear of the needle that she has. . and she has no reason to be afraid of it except that she's convinced herself she's going to somehow manage to sew her fingers together. She knows there's no way her fingers can fit under the needle and that he presser foot has a small finger guard. .. but 9 year old fears aren't always rational.

I was lucky, our local Salvation Army had clothes 50% off. . . no sense in spending a lot on jeans I'm cutting up. I got two pair with the tags still on them and they had embellishments on them already. . then two more which were lightly worn and had embellishments on them too. So I got 6 pair of jeans and a formal dress up dress for my niece for $22. One pair of jeans fit me, so I kept them. Because the jeans had decorations on them already, there was no need to buy iron on decals. Once pair had embroidery with glass beads on the front pocket and leg. I cut the decoration off the leg and made it into an iron on patch to fuse to the butt pocket. No sense wasting pretty decorations. Besides, those jeans still had the original tags on them.

So we finished our bags and I wanted to take her out to eat before karate class. .. of course she wanted McDonalds. I talked her into trying a local restaurant, but they were packed. About 15 people ahead of us wait. We didn't have that kind of time. .but my niece likes Chineese food and they seat pretty fast. So we tried a new place not far from her dojo. . . not too impressed. But Lena actually ate so I was happy. Now, I have awful gas still. The last time I ate Chineese food, I had such bad gas that it blew off my bag. .. . must be MSG. . . just odd. So at the current moment I'm a walking fart factory again.. .a tired, recling fart factory actually. Wish me luck. . no bag explosions tonight!

Scarlet Moon

lol! Feeling a little cheeky tonight. . . I have two beautiful birds. Lady is 24 years old. Cockatiel and arthritic. He's on some herbal meds as well as Meloxicam to get him through the winter. But the sad reality is that he's ancient in cockatiel terms. Most don't live past 17. He has a good home and an excellent vet. . and is in excellent health. He could live many years. His mate--yes his. . .see 24 years ago we got Lady as a tyke. . he didn't have his first molt so when the old vet sexed him, he sexed baby feathers. She was really a he. Should have waited to sex him based on his "affectionate" moves. When birds hump, boys hump tails down, girls tail up. If ya don't get it. . think about it and it makes perfect sense. . Anyway, Lady is trained and he has trained me well over the years too.

My problem is Sasha. Sasha is about 9. Quaker and just sassy. She's a plucker. . . a little spitfire of OCD and anxiety in parrot form. I got her last year when my homecare nurse and friend asked me to take her in. I had lost Lady's mate, Popcorn, several years before and she knew I'd give Sasha a good home. Sasha's owner was 84 and knew nothing about parrot care. So Sasha came to me with all her chest feathers plucked out, and her flesh torn open. Muscle was exposed. She was a mess. Septic too. Our vet confessed he never expected her to survive. But she did and she continued to grow healthier and healthier. She's still an OCD/Anxiety basket case and will never get the lovely little cone and collar removed from her head.. .so she'll be my little cone head forever. She's happy, she's healthy, she flies perfectly and most of her feathers are coming back. She'll always have a bald spot where she ripped her flesh open. So she still looks like a half plucked chicken with a cone on her head. lol. But she's my cone head.

Sasha did not have a name when she came to me. Lucy called her birdie or the birdie and because Sasha was so ill, she was easily trained to sit on Lucy's shoulder for hours on end. Sasha was deathly ill. . .she didn't care to go anywhere. Now she's fiesty and healthy and I'm having a hell of a time training her. She, on the other hand, is training me quite well. When she flies off I consistently go to pick her up. When she lands somewhere she knows she's not allowed, she laughs and I pick her up and put her back on her cage.

So I saw a bunch of videos on clicker training. Uh. . that almost works. I'm getting no positive responses from her with the clicker. When she does something good, I click, she hears the noise and then gets a pumpkin seed--salt free. Well, all the clicker manages to do is to freak her out and she takes off flying. I have no idea why it freaks her out, but it does. As soon as she sees it, she freaks. So scrap that. I had to lightly clip her wings cuz she flew into the patio door and stunned herself. She still has excellent flight. Clipping wings will not prevent flight if it is done properly. It should limit distance and altitude--but they still can go quite far.

I have tried to get her to come to me when she flies. . I offer her a pumpkin seed and she's learned to snatch that from my hand or fingers mid flight. So I started to palm it and she'd touch to grab the treat and take off again. She doesn't actually land and won't. . .but I'm still trying. She has plenty of places where she can perch and I won't take her flight away. It's not healthy for them not to fly.

Lady has never flown. He's plucked his tail out all his life. Looks like a chicken butt and he has no balance without a tail. Drops like a rock. But still when I take him up a flight of stairs or down, he still opens his wings to "fly". When he gets his full flight feathers in, he gets ballsy and decides to hurl himself off his cage and "fly". You'd think after 24 years he'd stop cuz he should know a 5 ft drop on a 90 gram bird means quite a fall. . but it's instinct. So when he does that, I clip his wings and he only "flies" when I pick him up or put him down. He's my special boy. I'm 38, he's been with me almost my entire life.

Broke my heart when Popcorn passed. She was about 20. Beautiful bird, sweet personality. I still miss waking up to her chewing on my nose ring. . . she'd be tugging on it and I'd wake up to her ass in my face. Popcorn flew quite well too. Landing. . well, she'd run into walls. Not a good lander unless she was clipped. Woke up from a lot of naps to her ass in my face and beak tugging on a nose screw. She only wanted the stone.

So back to my sassy little Sasha. . I have no idea how to work on training her to fly to the places she's allowed or to come to me when she feels she has run of the house. . . and let's face it. .she does. She's outsmarted me. She's not stupid. . the bugger has the ability to comprehend and to think as well as a 3 year old. . . so I'm trying to train a feathered toddler to fly to me and to not land on my furniture. Some days I think I'd have better luck nailing Jello to the wall. . . oh wait, isn't that what they say about raising teens?

It's back to parrot training videos and searching for new training techniques. Clicker training and bribery by treat are not working for us. . . maybe she'll stop being so stubborn and learn that flying on the furniture means going on her cage. I have to admit, since Lucy hacked her wings, it's only been 2 months or so that she has been able to fly. She still has some more flight feathers to come in. I gotta get her to learn that flying to her play areas are o.k. Putting treats there isn't working so I have to come up with a way to outsmart and outwit a little green parrot. . . or cave and place a sheet on the back of my couches. . .and that's not gonna happen cuz I am not letting her think it's o.k. to poop on my couches or on the carpet, or my bed. Her play areas are designated poop zones with places for her to poop. Flying on the furniture wouldn't be an issue but when birds take off or land, they often poop to make themselves lighter. And Sasha always poops when she lands. . . . always. Now I can wave at her and she'll take a detour and go back to her cage if she's trying to land on my couch. . .can't do that when she takes off and goes upstairs into my bedroom. . . so for now I'm closing doors and limiting when she thinks she can go. . . maybe she'll get it. . .it's only been 2 months.

She has a follow up with Dr. B in about 3 weeks. I plan to ask him what is a good method to break the new found flight issue. He's an avian specalist, I'd think he'd be able to recommend something. Who knows, maybe in 3 weeks she'll pick up on it.

Scarlet Moon

Thanksgiving is right around the corner and it's going to be a busy week. Today I finally steam mopped the floors and changed the runners/rugs so I feel like my house is cleaner. Now I just need to start cleaning out my spare room. . aka my sewing room and put all the crap away. I got sick a year ago and all the crap I didn't feel like dealing with went in there, then the ostomy supplies ended up taking over for awhile, and now it's just extra medical stuff and random crap. It stresses me out thinking about it.

The sewing machine in that room needs a tune up so I've been using the one in the playroom. I don't even know if they make machines to fit in those nice desks anymore. . .. Anyway my niece is coming over Tuesday after school (half day) so she can work on our bootie bags. I'm really excited for her to build confidence on the machine and this is such a simple project that it's a good one for her to do. And with Christmas around the corner it will give her a confidence kick when she sees everyone open theirs. Sewing is a dying art and a fabulous creative outlet. It's like putting together a fabric puzzle--especially quilting. You gather all this fabric and decide what goes where to build a mental image of what the finished design will look like. I love the design process, but I also love being on my machine. Nothing else is there with me. I can lose myself in it.

The only other hobby I've had where I could totally lose myself in it was my motorcycle. . . and I miss riding but for now my riding days are over. There's this part of me that wishes I would have replaced it after it was stolen and totaled but I was moving and it made more sense to put that money into my home. I needed appliances etc. Couldn't take them from the condo. .. Then I had surgeries and now I don't know that I belong on a bike. Last thing I want to do is to be on a bike and realize I need to empty and lose focus on the road. I can see that happening so I keep my endorsement valid just in case someday my health will allow me to ride again and my finances will allow for a bike. Two big ifs and whens. . . . . I loved that bike. . broke my heart when it got stolen. But I did laugh my ass off when the idiot who hot wired it used it in a robbery and she torqued out on him. It caused him to drop the bike but what dumb ass steals a 250cc Ninja to rob a liquor store and use it as a get away vehicle? I bought the bike cuz she topped out at 90mph. And yeah, I got her there while on the backroads. Red lined my car and bike on 'em. I think my next one would be a 500. I loved that 250 though. . . and it's probably best if I get one that won't hit 150 mph.. . so maybe a 250 is best. No matter what it would be another Kawi crotch rocket. I just loved my Ninja. Maybe after grad school is paid off. . or if I ever am allowed to go back to work.

I don't know what will happen if I'm ever cleared to go back to work. My teaching license is expired. I can't take a clas to prepare for a new career or to renew my license. My regional union told me that even if I were on my deathbed and attached to a dozen machines in the hospital, if I took an online class that means I can go back to work and I'd lose everything. No doctor will release me under current conditions anyway and my GI already said I can't go back until the Groshong removed. It's like asking for sepsis otherwise. As of now I'm unhirable . . . and a bit frustrated. I feel stagnant and I hate feeling stagnant. I bought a house planning to go back to work in the fall and I was so sick I couldn't leave the house let alone go back to work. I don't regret it though. After they keyed my 6 month old car and stole my bike, not to mention the 3 breaks ins, I was glad to leave that condo. This house has always been my sanctuary. . . but if I knew I wasn't going to go back to work in the fall, I don't know that I would have closed on it. I planned to have a much higher income when I signed those papers. Oh well. . it is what it is. I'm happy here; but more importantly, I'm safe here.. . .and a very wise woman once told me that sometimes that's all that matters. And I think Martha was right. You can't put a price or value on feeling safe in your own home.

Scarlet Moon

Just a short one today. . .I really needd to get better at blogging to keep track of what's going on so I have a record. Not that I have problems remembering it, but it's nice to look back and see things you don't always remember or to notice thigs you didn't put together. So. .FINALLY got the whole Rx issue resolved. The potassium chloride was cleared and deemed o.k. by my doc to do. . .silly to block it because I take bowel meds. I get that it could cause GI bleeding. . . but as a patient if I'm willing to take that risk and tell her I'm fine with it, I don't see why I couldn't have signed off on that. So they had to wait for my doctor to say he knew I was on the Donnatal and was o.k. that it was a GI bleed risk. I put the info in Mediguard and there are more interactions with the Chlorthalidone and Paxil than anything with the potassium. But I did take it and I did get a bit of a woozy feeling and start to pee.. not much more, but some more. My blood pressure dropped from 158/95 down to 135/82. It hasn't been that low since starting the IV fluids. . . so I'm hoping it works as it should. Maybe I'll even get back to my normal 110/70. We shall see.

I am worried because I've been so thirsty today. I haven't been that thirsty since I went into renal failure. I'd be more concerned if I wasn't peeing. . which the chlor.. is supposed to make happen. I'm back on the IV now. . .and maybe after I get the 3 liters that thirst will feel quenched. We'll get a better idea of how it's effecting the fluids and electrolytes after next week's labs. .. I just don't want this to end up causing total dehydration. Drinking helps me feel like I'm quenching thirst. . .but it just comes out of Squirt so it really isn't. . but that's what the IV's for.

It's only 9pm, but I'm tired so off to watch Criminal Minds and with any luck the potassium will absorb much better than the potassium gluconate and take care of the leg cramps and I won't be walking the halls at 3am anymore. So many good things could come out of this medication combination. .. i know. . .don't jinx it. :)

Scarlet Moon

Yesterday was a blur. . I slept all day. Probably a good thing as I didn't have to deal with the pain. No real vomiting. some dizziness and feeling sick, but other than the pain, it wasn't nearly as bad as last year. . . then this afternoon about 7pm I got cold. . started to shiver kinda cold. I don't even need to take it. . .but I did . . and I had a pretty decent temp. Over 100. . .So about an hour later the pain came back with vengence. I felt like my legs and shoulders were being drawn and quartered. . .then every joint in my body started to ache. .I wasn't having any of it so I took two Aleve, then about 2 hours later took 2 more. That finally killed the pain. Probably took a little more than I should have, but considering half of my meds pass through, I'm not really worried about an overdose.

Still waiting for approval for the potassium chloride . .. not in a hurry cuz I won't start it until after this Reclast mess is done. I have such a high pain tolerance. . I've rigid sigmoids without anything. . . but this kind of pain is just unbearable. It's right up there with the Remicade joint pain. . . every joint on my toes feels like they're being pulled apart from the rest of my body.

Naturally my family's worried. . . just what I need another fever with the groshong. . but I really think it's due to the Reclast.

Scarlet Moon

Reclast treatment tomorrow at the hospital. Last year I got super sick and spent a week puking. Nothing stayed in or down. So more than likely I'll be off the grid for about a week. . . .

Scarlet Moon

My kidney doctor appointment was good.. . . .I think. .. I hope. . .

There are no physical reasons for the kidney infections.

The sepsis is the main problem and we KNOW it comes from kidney infections.

The kidney infections are due to me not peeing from dehydration.

Dr. Topf is a fluid expert. He has oddball patients like me who have kidney issues due to secondary reasons. So stepping back our main focus is to stop the sepsis. So we're going to try a water pill and potassium supplement. The theory is that since the kidneys are doing their job of not letting fluid out when water reserves are low, we have to force them to let go of what they're holding on to. If we do that, they'll flush the bacteria out and the kidney infections should stop. In theory. this makes sense to me. It's logical. It would fix both problems. . the sepsis AND the high blood pressure caused from the IV hydration. I like this approach as it seems more logical and "natural" than putting me on medication for high blood pressure when I don't have heart disease and I really don't have renal disease. . . this all the bowel's "fault". If we could fix the bowel, everything would go back to place.

The problem is that I'm still dehydrated. At this moment while on an IV you could draw my blood and it would show that I'm dehydrated. It could shut the kidneys down and throw me into renal failure. The bigger worry is that I could lose too much potassium. My potassium is always low anyway. It takes 3-4 potassium supplements a day to keep it around normal. So he put me on a potassium pill as well. It should be better absorbed than the over the counter supplement, and hopefully will keep those levels where they belong. . .cuz if they don't it can screw up the blood pressure and cause an irregular heart beat. If it dropped low enough, I could die. But I have a good relationship with my body and can tell when things are off. I know which electrolytes are off by where and how I cramp. I'm not really worried about this.

So in a week I have labs drawn to check the potassium levels and then in a month I go back for a follow up.

There was a drug interaction with a bowel med so Rite Aid had to call to let the doc know. Then my pharmacist wanted to switch it to a tablet because I should absorb it a bit better. Truth be told, I wouldn't start it until after my Reclast treatment on Friday anyway. I don't want to start a new med and drive down to Detroit not knowing how it will make me feel.

My mom's kinda pissed that I agreed to this. .. I think part of her feels that it's asking for dehydration and a run with renal failure and it's a bad plan. . . but I think she's more scared than anything. She's tired of seeing me sick and I assured her that she might be tired of seeing it, but I'm the one who has to live it. I get that there is a risk with this, but if we do nothing I risk renal failure and sepsis again. What's worse for me. . try this and if it backfires, it backfires; or do nothing and I end up septic again. I don't know how many times I can take a bout of sepsis. Since March of '09 I've been septic after both surgeries, and 5 catheter lines. . or 4. . anyway 6 or 7 times in not quite 4 years. Low potassium is an easy fix, they give you a bag of potassium via IV. . . Plus I get potassium in my nightly bags of lactated ringer's. I'm not worried. I know I'm in good hands.

I have been sick for all of my 7 year old nephew's life. I haven't worked since '08. I had a stroke, 2 bowel surgeries, countless procedures, tests, too many tests. . . I know what it feels like to be tired of being sick. I'm 38 and I haven't even been able to date for the past 5 years. . . I lost my teaching license because I can't take classes to renew. I can't take classes to renew or I risk my medical retirement. I had to take a medical retirement or I lost my health insurance and when you're facing a surgery where you know you'll be in Cleveland Clinic for a full month, you do what you have to do. It's not fair that I had to give up my career. It's not fair that I'm still paying on my MA, it's not fair in any context, but that doesn't stop me from fighting.

Bowel disease is unfair and cruel. This was supposed to be over 11 years ago when I had my colon removed and j-pouch done. It was supposed to be over after the c-diff infection got cleared up. It was supposed to be over after the Remicade,hgh, octreatide. .

So we'll see. If you don't hear from me in a few days, I'm at "club med" again. .. .

Scarlet Moon

I see the kidney doc tomorrow. . wonder what he'll want to do about the chronic UTI's after reading what the urologist said. Tired today. Spent a good amount of time over the past two days going through stuff and winterizing the house. A little too much time doing it. Tea kettle is on the stove, and in a few I'm gonna relax and check on the election status then call it a night.