Whazzup???!!! (5-26-16)

Oh, so very much! Jonathan's Graft vs. Host disease has settled in his digestive system, primarily in his stomach and intestines. It's not fun, I can tell you that! Add to it that he somehow contracted norovirus, and it requires even more medication. The "upside" is the steroids (prednisone) he takes for the Graft vs. Host disease increased his appetite and he's gained back the weight he lost. He goes to COH twice a week, and I normally take him on Fridays, which is an all day trek. When I get home, all I want to do is eat and sleep. I've become notorious for yelling "Leave me alone!" once I get in bed on Fridays. Not even promises of treats will cause me to get out of bed.

Then there's Daniel. While he had no ill effects from donating, his seizures started up about 5 weeks ago after being seizure-free for nearly a year. We had been gradually decreasing his phenobarbital since September last year, and he had recently decreased to 1/2 of a 32.4 mg tablet at bedtime, so he went back up to a full tablet at bedtime. I picked him up on Tuesday night so he could see the Specialist yesterday, and then stay over with us until Monday night (5-30) Today, Shilo and I decided to drive from Long Beach to CiCi's Pizza in Corona because pizza is Daniel's favorite food. Never mind that Shilo is gluten intolerant! Shilo ate salad and the pizza toppings, and I ate the outside crust he left, plus salad. I'm a carboholic, but I think I can go until next month without bread. (Roll me home, boys!)

Child #5 told me on Mother's Day that he and his lovely wife are expecting their second child. I'm so very excited about this! 9 months ago, they were separated, and heading for a divorce, and now this! I'm really happy that they decided to get back together and make it work.

My oldest, who I invited to move in with us in September last year after a nasty breakup has only reinforced my feelings that I'm too soft-hearted when it comes to my offspring. If anyone deserves a paddling, it's him, simply because he refuses to follow basic rules, and getting him to move out is futile. Maybe if he'd make an attempt to catch up on the back rent he owes, I'd feel better about it.

Child #3 is is living happily on the East Coast with his girlfriend. I love hearing from him, and spent over an hour on the phone with him on Mother's Day.

Then there's Daddy Wayne (AKA: Daddy #2), who recently had his other leg amputated. I visited him about 2 weeks ago in the Rehab section of the hospital he's in, and I was shocked! He was mostly unresponsive, and when he finally responded just as I was leaving, he said all sorts of crazy things. I figured he had just been through too much, and waited two days and called him. He didn't answer. I waited an hour and called again. Both times I left a message, but I was getting worried. He always calls me back right away. Every few days I called, and on Monday I decided I had to do the thing I dreaded: I called his roommate (AKA: The Ex) and told her about my concerns. She was extremely kind, and explained that he had been over-medicated, and the dialysis wasn't filtering the medication from his blood, and as a result, he was poisoned! I have seen him in bad shape before, but this is the worst I've ever seen him. Fortunately, he was already recovering by the time I spoke to her, and he called me Wednesday while I was out, so I took Daniel with me, and we visited him. I even took a short video recording of him explaining what happened so I could share it with anyone who was interested at the Pasadena Munch.

Oh, you wanted to know about me? Well, I'm still standing, and I'm learning more about myself every day. I still have horrible insomnia, and I'm doing my best to stay positive about all this, and, honestly, I realize that that I should count my blessings, because I know how very fortunate I am to have what I do, and because I'm not gonna give up, I'm planning on heading back to the dungeon again soon.

The Complications of Complications

It's not a brag when I tell people that I've pushed myself past the point of exhaustion over the past 7 months. Rather, it is a confession. A confession that I'm not a supermom, I'm human. I've done my best to stay strong and keep my Family together, and keep myself together a well. All those days I slept maybe 2 hours at a time and then was (mostly) awake for another 30+ hours. It can really mess with your head. At first you feel invincible, but after a few weeks, reality sets in and you crumple up in tears, just wanting 8 hours of uninterrupted sleep.

Everybody else isn't only your focus, they become the focus of everyone else around you, and you disappear. Heaven forbid you should mention how you're feeling because it's not about you, it's about them. You start to feel guilty when you do things for yourself, and you know that you need whatever that thing is. Oh, and the sleep? That feeling of helplessness eventually disappears, and you become invincible again. It's similar to a manic episode, but it's not, and no amount of (prescribed) drugs will allow you to get the sleep that evades you, and the emotional rollercoaster becomes a waking nightmare. I've been there. I've been there a lot. So many tearful confessions in the middle of the night. Not even sure of what I needed, but knowing I wanted something.

I can look back now with a clear head, and besides the obvious, (sleep) what might have been helpful is having someone outside of my Household insist on making sure I was getting enough food and fluids. Dragging me away from the hospital, pushing me into having fun. No one is to blame on that, well, no one but me. I effectively pushed others away because my brain was mushy from a lack of proper rest and nutrition. It took Jonathan “ordering” me a month ago to actually go out without feeling guilty, and I came back from that feeling even worse. It took me until today to analyze it and tear it apart. At first, I thought it was my social anxiety rearing up its ugly head, but it was more than that. I had forgotten how to enjoy myself, and I had gotten so used to taking care of things that I pushed others away. I defeated myself.

This brings me to now. Today, May 4, 2016. I slept last night. I slept this morning too, and it was uninterrupted. I ate yesterday and consumed about a gallon of fluids. I've had nutritional food today as well. I might even gain back the25 pounds I lost. That's okay. Right now, at this moment, I have inner peace. Don't be lulled into thinking things are good, because they're not, but I've learned something: I have been suffering from the complications of complications, and now that I know what it is and what it's done to me, I can work on getting better. Can I fix the other complications? No, but that's what the doctors are supposed to do.
 

The Complications:

When someone has cancer, or AIDS, or any other life threatening illness, complications are mentioned, but they really aren't expected. This isn't to say that they rarely show up, but most people don't want to hear about it. They don't expect it, and the Specialists and Doctors and Treatment Team are constantly observing and looking to be sure that the most common ones (fever, rashes) don't occur. Steroids (Prednisone) and other medications are routinely prescribed as a precaution. Jonathan currently has 20 different medications prescribed, most as a precaution, and some to deal with his constant pain. Most days, he does well, and he's in a good mood, and if it wasn't for his bald head and the mask he wears you wouldn’t realize he was sick.

When Jonathan called me on Friday, April 22^nd, just as I was fixing dinner, he had a high fever and needed to be taken to the hospital immediately. No, not the local one. City of Hope. I left instructions with Stitch and Shilo and headed out the door. Once there, they took his vital signs (weight 64 kg, mentioned because it's important!) assigned him to a temporary room, and did a series of tests on him, including an EKG, chest x-rays, and blood cultures. He was admitted, and I brought him home Tuesday night. He was feeling weak, but better. I had planned on driving him to his regular check up on Friday (April 29^th) so his early morning call wasn't unexpected, but he sounded horrible. I had to assist him into my car, and get a wheelchair so he could get around. When it was time for him to see the doctor, he got up on the scale and I panicked! He was down to 59 kg! I'm not very good at math, but I knew it was a loss of at least 10 pounds in a week! His Doctor was naturally concerned, and after a long Q&A, Jonathan was sent to get a 4 hour IV therapy. He also decided that Jonathan might be having complications related to his transplant, so an endoscopy was ordered for next (this) week. What was supposed to be about an hour turned into an all day event.

In the meantime, while all the above was going on, my oldest child (age 32) did something stupid and was giving me all kinds of unhappiness at home, including having to deal with his father (actually father of all my offspring). My ex-husband was the source of nightmares for years, and even though I no longer have them (at least not ones with him in them) I have a lingering disgust when it comes to him, and I cannot be civilized, no matter how much I try. That was settled by Saturday (April 30^th) but the damage was done, and he brought his daughter over for the weekend without checking first. I Love my granddaughter, but I also appreciate advance notice.

So, fast-forward to Monday (May 2^nd) and Jonathan asked me to take him for his followup appointment the next day (yesterday) because he was having the endoscopy as well, and that requires a driver (me!) I didn't sleep at all (as mentioned in the beginning of this journal entry) but I got him there. This time, because I was less worried, I listened as the doctor explained his concern/theory. Apparently Jonathan has Graft vs. Host Disease (https://www.nlm.nih.gov/medlineplus/ency/article/001309.htm) that has settled in his stomach. The endoscopy (that started 3 hours late) confirmed it. I take Jonathan back on Friday to discuss possible treatments, but I understand this may be a long term thing. Oh, and I'm going to listen to him and get out more often, because it makes him happy to see me happy, and if I happen to distance myself, know that it's not you, it's me.

All Over Again

Yes. Things have been rough lately. I've shed way too many tears, and my emotional pain has sometimes been unbearable.  I've been here before, and I've suffered these all-too-familiar feelings before,  I know what it is like to feel alone in a crowd, to feel unloved in a room full of lovers. To feel hopeless, helpless, unloved, unwanted undesired. To feel like a failure.

Still, I also know the Joy of Loving someone, truly Loving someone, and knowing that they Love me back. That undeniable feeling of Hope and Joy for someone who truly 'gets' me. Feeling invincible. The butterflies when I'm being held, touched and kissed. The sharp intake of my breath when I'm being kissed or held, and I'm just floating on air. The pleasant giddiness of it all.

Just because I know that wonderful feeling, it doesn't prevent the earlier-stated negative emotions from coming on, and, granted, I have earned my stripes in the suffering department, so it's not really an overreaction on my part. I would almost dare to challenge anyone who feels I'm weak to walk a mile in my figurative shoes and get through it without feeling despair at times.

But this "All Over Again" I'm referring to is is the Love. No, there's not a recent Love or attraction over the past few days. Nothing like that. It's that I was reminded again how well Fetlife archives messages from our past by a friend, so I took a trip down 'Memory Lane' back to 3 years ago when I was in a fragile state over the unexpected death of my Mother, and things felt hopeless for me. I read messages that started off so innocently, and how they turned flirty, and then developed into a mutual wanting, and then Love, and how it happened over the course of a few months. I started reading them analytically, but in the hours of reading, I found myself falling in Love all over again with him.

I've never stopped Loving him, but the weight and burden of going through this shitstorm called life, I forgot just how much I'm Loved by him. I forgot how shy we were, and how afraid we were of opening up to each other. I forgot what a delight I was to him, and how much tenderness was expressed between us. I needed to remember that it's still here. That our commitment to each other still stands. How much he loves not only me, but Stitch as well.  The sacrifices we all made so we could be a Family.

Yes, I always say how important it was and is, but I forgot all those wonderful feelings that came with it.  How he described me in his early journal writings. His eagerness to please me, and my uncertainty of whether I could actually take a chance with someone new, someone who had what I thought of as character flaws, most notably smoking cigarettes and an aversion to rejection that was so strong, I wound up in an M/s relationship against my better judgement with him.

I'm alone right now. Stitch is asleep in his room, and Shilo is at work, but reading those notes, messages, and journal entries have me feeling it all over again. Falling in Love over and over again with someone is perhaps the best feeling of all.  Remembering how very precious I am to someone else. Retracing those first few steps into an unknown and untested territory.  Giving up, giving in. Feeling all those feelings just like the first time, but knowing the rest of the story. The one that says "and they lived, and they laughed, and they hoped and they dreamed. They had struggles and storms, and held onto each other when things were tough, and even though there were times that they got frustrated and felt like giving up, they didn't. They just kept Loving each other whether they were crying or at odds with each other, because that's what people who Love each other do. They don't give up."

I think that's the best part. Whatever discouragement I've felt is now tempered with falling in Love once more with Shilo.

Addendum: Stitch and myself have been together for 12+ years, and while it may seen to some that Stitch is on my back burner, it's not that at all. We seem to weather storms together without the uncertainty that has happened more recently with Shilo. This isn't to say we don't have our 'moments,' it's that we are so established that we don't worry. Stitch is a talkative extrovert. I know that one day, it will be the same with Shilo even though he is a quiet introvert. It's the difference between the tested and not-so-much tested, the new and the not-so-new.

https://www.youtube.com/watch?v=eZi6qNi9TeU

I'm On The Hunt

The natives are restless, I'm restless, can't sleep. Longing, desiring, wanting something, someone who can feed my inner hunger.

WAIT! I hear you yell. “Aren't you satisfied, happy with what you have?” I stop to consider the question.

My reply:

I'm very happy, but they deserve a rest sometimes, and I'm capable of so much more, and I want to share what I have. I want to paddle someone's ass to a pink perfection while Shilo observes contentedly, and Stitch fetches water for me. I want to feel the raw energy of someone enraptured with my eyes and attentiveness. I want to feel a body drenched with satisfaction and endorphins caused by my actions. I need to feel useful.

I've spent 6 months in a shell, in survival mode because of things going on in my Family and Household. I'm like an animal that has spent time in hibernation and has awakened, hungry and desiring what I've gone so long without. I've crawled through a long dark tunnel, and I can feel the
warmth of the sun, and I smell flowers and promises in the wind. I hear water, a brook, perhaps? rushing nearby. I'm ready for it!

Like a Warrior in a time of Peace, I know that this moment isn't promised forever. I want to celebrate the victory while I can, because I know all too well that it can be a fleeting thing, and I want to feel refreshed for when the enemy attacks, but I hold on to the hope that it won't happen.

Times like now when all is well with my world is what keeps me going when I'm in the trenches, when I am hibernating, when I am barely surviving. It gives me something to look back on, something to look forward to.

I've thinned out and my eyes are a bit hollow as a result of what I've been through, but I am still strong, and I want to share, so please allow me to hunt, to share, to laugh, and celebrate. And, if you are desirous of my offerings, come to me, and I will share. Isn't that what Community is all about?

Threats and Promises

I'm currently locked out of Fetlife due to a clerical error. Whenever I do get back on, I'll probably post this there. In the meantime, if you are easily disturbed by violence, etc, I ask that you refrain from reading this, or read it at your own risk.

YOU HAVE BEEN WARNED!

Threats and Promises can be either good or bad.  There are occasionally good threats and bad promises. It all depends on the point of view of the recipient.  As for me, I won't make a promise I can't or won't keep. Still, I often do things I say I'll do without the words "I promise."  I'm in need of an emotional dump, and right now (9:45PM PDT on Sunday, April 10, 2016) I'm not sure how this will all end, my jumbled thoughts dropped out of my head and onto the computer, nor am I sure how long it will take for me to put it all down, because I mostly type with one or two fingers.

I don't need to put this down, but my defensive side forces me to: Yes, I was sexually abused as a young girl, yes, I've been assaulted numerous times, including in an abusive marriage that lasted nearly 13 years, and I've been raped more than once, with the last one being so traumatic that I have "shut down" several times since then. (July 2004) Still, this has nothing to do with my sexual preferences/practices or my involvement in BDSM. I don't see myself as a victim, I see myself as a survivor. Still, the memories will sometimes make me cry.  I have PTSD. I have "triggers" that affect me. Some I'm aware of, others that take me by surprise.  This doesn't make me weak, nor do I want or need anyone's sympathy. Acceptance is fine. I'm not fragile. Time has taught me that I can make it through the pain.  I'm picky about the Ones I go to when I need to be held and comforted. They know who They are.

'Deadbeat' (the father of my children, and the man I stayed married to for 13 years) never threatened or promised. Instead, it would often come swiftly and unexpectedly.  It took me nearly a year after I left him to feel safe enough to tie my shoes unless I locked myself alone in a room.  I would rather trip over loose shoelaces than dare to put my head down long enough to retie them. It wasn't the fault of my children that I was often beaten for their actions.  I always thought 'better me than them' but sometimes, they would be beaten as well. Two months before I left for good, he gave me a black eye just before I got into the car to visit my family. I had told them many times over the years that I was in danger, but I think the black eye finally got their attention. I can't begin to count how many times I was told "Try and work things out, give it time." Sometimes, it's just not enough. Sometimes, nothing is good enough. Sometimes, you need to realize your own value and walk away.

I don't recall every instance, but my sexual desire was nonexistent, so Deadbeat would often take me in my sleep, and then wake me up and hand me a towel to clean up. I was a member of a very conservative church, and I was told by the Pastor that it was my "duty" to give him (Deadbeat) sex whenever he wanted or he might find someone else.  Looking back, I think it's funny. After I left, I found out Deadbeat cheated on me numerous times, and then accused me of cheating and beat me.

In spite of all that, I remained trusting of others, and I discovered that most people were good. I became fearless, and even though I often had night terrors that would make me wake up screaming, I did okay.  Once, when I was living on a boat moored off of Catalina Island with my boyfriend at the time, my screams caused the Harbor Patrol to pound on the doors because someone thought I was in danger. When they saw that I was physically okay, and was told that I had night terrors, they noted it, and we were no longer disturbed by them.

My boys would sometimes have friends over, and my screams would wake them. I used to apologize for frightening them in the morning, but it eventually got to the point that all their friends knew that my screams were 'normal' for me. Now that they're a distant (bad) memory, I ask myself how anyone could consider it normal. I will sometimes wake up scared by something in my dreams, but nothing like it used to be.

My ability to easily trust others was taken away when I was raped in July 2004. Nearly twelve years later, and I still take my time in inviting others into my life. I might have hundreds of Facebook friends, but it's a very few people that I call "friend." There are people who have known me for years and they only know my nickname. Since my home is my Sanctuary, I rarely have people over anyway. "It's not you, it's me" applies in this case.

Looking at the clock, and other than two five minute breaks, I've been at this for 90 minutes.  I'm still not finished, but where I am now isn't exactly where I thought I was going. I still need to get to the place I was heading, and I will get there in time.

I've covered Threats and Promises from others and I barely touched on mine, which is where I really wanted to go. Thank you for being brave and patient enough to get to this point. I wish I could promise you it will be worth your time, but I can't.  That decision is yours.

I love many people, some know it, some suspect it, and others have no idea just how deeply I love them. There are only two people who I am "In Love" with, and they are Stitch and Shilo. I've Loved Stitch longer, but that does not mean my Love for Shilo is less, nor does it mean my Love for Stitch has diminished. Love is not divisible, it is something that can only be multiplied.

Love is perfect, but it doesn't mean that my relationships are perfect and painless. I could only wish for that. In this case, the pain and imperfections in my relationships remind me that I am alive. Like the waves of an EKG, it has it's ups and downs. "Happily ever after" is a fairy tale. My life is not a fairy tale.

I'll tell you that life is often ugly and scary, and sometimes you think you've reached the top of a hill only to discover that there's HUGE mountains ahead. It's not easy.  It's a fact. This isn't a complaint. Nobody likes a complainer, but nearly everyone likes likes the truth, even if it's ugly.

Stitch isn't as healthy and strong as he used to be. He's often tired and surly, Choosing to argue instead of trying to understand.  He often pushes thruogh at the expense of our relationship. I've told him I'd rather have cuddle time than a clean yard, but because Shilo has had his own health issues, Stitch feels it's his 'duty' to take care of things.

Stressors will often cause me to have digestive issues, and, combined with my medications, my stomach is frequently tied up in knots. My SAD is at its worst in April, so the uphill battle is often lost by me.  It's easier to give in and quit than lose and be unsuccessful in whatever I want to do.

Then there's Shilo. Where Stitch is able to use his verbal skills and express himself, Shilo is often silent. Fortunately, he keeps an online journal for me. He hasn't always been completely truthful in them, especially when it comes to things that he's afraid I'll be disappointed in him about, (Smoking comes to mind) but it's still a useful tool. Shilo will often guard things and hide them instead of being vulnerable with me. I've come to accept that it's just how he is.I'm not sure if he realizes the pain I occasionally get from that part of him, but, just like him. I often guard that part of me.

I'm not going to hold back. It's past midnight now, and a new day (Monday) and I need to get it out. This is something I've held close, but it's been to the detriment of my relationship with Shilo. We've both been through so much with each other. and I admit, I've gotten 'soft' when it comes to him.  The 'soft' has nothing to do with my Love for him, it's mostly had to do with me wanting to avoid long periods of silence (our way of "arguing") and because I've felt like crap. The past few weeks Shilo has been very confrontational and critical (unlike him) and instead of rising up against him (which is something I'll often do with Stitch) I just back down quietly and stew in my own juices. This won't continue much longer. Shilo knows I won't allow myself to react in anger, and I often choose to take a "cooling off" period before dealing with things.  This "backing down" isn't "cooling off" it's me retreating in my emotional cave.

If you'll go back up to paragraph 5 (6?) I made mention of my my former Pastor telling me about my duties and warning me of possible consequences that might occur if I shirked them. I only mentioned the sexual there, but there were other warnings as well. What was unknown then (but known now) is that I have bouts of severe depression. Depression doesn't always manifest as sadness. It has many facets. So here I am again, only in the other seat. No threats, promises, warnings, or guarantees. Only an observation: The reaction is retreating and depression, but one day, there will be action. I have no idea what the action will be. I know what I desire. Love is perfect, and I keep my Promises. I guess the last two sentences about covers it.

This took 3 hours from start to finish. Maybe this is my action, or maybe it will inspire positive action in others. Bedtime!

Getting Burned ~ A True Story

Yes, it's April Fools Day, but this isn't a joke. Still, I wish it was...

Sunday, March 27 was Easter. It's a Christian Holiday celebrated by Christians worldwide. However, because I live in the good old U.S. of A, it's become a day of food and fun, much like the Pagan feasts on which they (Christians) borrowed many years ago.

So, on to my story...

Shilo worked on Sunday. In fact, he works every Sunday evening from about 3PM until about 6 the following morning.  In other words, he works a very LONG shift. This is so he works 3 nights a week instead of the traditional 4. This means that any Sunday Holiday is either celebrated Saturday night before, or Thursday night after. I go all out on preparation of Holiday meals.  My planned meal for Easter was ham, gluten-free (I use corn starch instead of flour) potatoes Au gratin, and broccoli.  I bought the bone-in ham, Yukon gold potatoes, cheese and broccoli last Saturday.

I put the ham flat side down in a roaster pan and ignore it. I always make the glaze separate because I prefer to pour it on my meat when I'm eating it. As for the potatoes Au gratin I do most of the potato slicing using the side of my grater, then Shilo takes over cutting the small pieces I leave with a knife. I make the gluten-free cheese sauce while the potatoes are boiling. When the potatoes have boiled long enough, they go into a strainer.  I usually have Stitch help with that, but he was hiding in the bedroom, so Shilo helped instead. Maybe I wasn't clear in how I usually dump the potatoes, but when I dumped, I got a splash-back of boiling water on my right leg.  Yeah, it hurt like a motherfucker, but a little cold water on the spot and I was fine.  That was burn #1.

Burn #2 was when I took the aforementioned ham out of the oven.  Well, not that moment, but when I used the large fork to turn it over to cut, I lost my grip, and splash! went the ham in its juices, and it got all over the tight tank I was wearing. I ran out of the kitchen screaming in pain, all the while pulling off my clothes. I got into a too-cold shower and screamed more. I eventually settled, and got clean. Fortunately, the 4 inch square of burned skin was a light pink, and not as bad as it felt when it happened. I'm pretty sure I did the right thing by pulling my clothes off immediately. Needless to say, Shilo sliced the ham for me to avoid any further injury to me.

I will admit that the food was so good, it was almost worth the burns.  I'm feeling okay today, and the burns are almost completely gone because I took care of them right away.

Thank goodness I don't have to do anymore major cooking till Thanksgiving!

Being The Flower

To those of you who celebrate Easter I hope it's happy. To the rest of you, I hope you're having a wonderful Spring day. I wrote the following as my Facebook status:

Sometimes you just have to ignore the rubble in your surroundings and notice that there's a flower growing right in front of you. It doesn't see the destruction. All it cares about is the sun's warmth. Today I want to be the flower.

I've been through a most difficult 6 months. The only reason(s) I'm not lost is because I have wonderful people who care, and I have Faith in God. (Sermon over)  Battling the darkness and depression has often been a second by second thing. Sometimes I win, but others (many more) I've lost. It's so much more than Jonathan's cancer. My long-term Therapist/Psychiatrist retired in January, and my closest female friend moved on to bigger and better things (a high paying job) in September.  Yes, I'm happy for them, but my happiness for them isn't enough. Those are just a tiny part of what has brought me down, but this journal entry isn't intended to be a pity party.

I have difficulty in admitting my weakness and asking for what I need. Fortunately, there are people who know that the more I push away, the more I need whatever it is. I have friends (and I don't use that term lightly) who have only known me since all these changes took place. They don't realize how happy/crazy/unedited I can be. Well, today I'm gonna be that flower. It's not going to be easy. I've been working on being that flower for the past few weeks, and I've failed miserably. Still, today is a new day, and I have managed to expand my horizons a little bit. I'm focusing on those things.

Today I am a flower. I am The Flower.

https://www.youtube.com/watch?v=ORA9pzKDgbs

(3-21-16) Twelve Days Post Bone Marrow Transplant

I held off on writing this in hopes that I'd have good news, and everything would be neatly packaged.  I temporarily forgot what a cruel sadistic bitch cancer can be. I'm not wanting to be "Doom and Gloom" either. Still, the truth/the facts need to be shared, if only so I can relieve myself of the burden that I'm carrying. I'll also do my best to share some of the brighter moments in my life here because I want my readers to know that I do have a few good things going on. If this seems jumbled at times, please understand that I'm running on empty and I really should be in bed. Speaking of bed, I'll start with the good news that my long-awaited CPAP supplies arrived this week. My tubing was full of holes thanks to one of the cats, and I couldn't breathe. I've managed to sleep really well since receiving the supplies 3 days ago. The only "bad" news is that they are no longer completely covered under my new medical insurance and I had to fork over 20%. Still better than paying full price!

Bone Marrow Donation Day 1 (3-8)

Up before the buttcrack of dawn (4:15AM) to pick Shilo up from work in Hollywood, then drive home to Long Beach, get Daniel out of bed, feed him 2 bananas (for the potassium) and have him take 5000 mg of calcium in addition to all his other medications and a light breakfast and get him to City of Hope at 7:45. Naturally, the traffic wasn't cooperating, and I was having a hissy fit. Still, we got there in time, and Daniel managed to put up with the IV's in both arms. One to remove the blood and stem cells, the other to return the blood, calcium, and saline solution. Once he was settled (an hour later) I took a walk to the cafeteria building and grabbed breakfast (scrambled eggs crisp bacon and oj) As I walked back to the building where Daniel was, I got a call from my girlfriend telling me she had arrived and was waiting for me. It took everything I had for me to not let go and just cry. She spent most of the day with me, and even went to visit Jonathan. She also drove me to Smart & Final so I could get a large box of "Cup of Soup" for Jonathan because he was having difficulty swallowing and couldn't hold down any food. She had an appointment later in the afternoon, so she left early, but she was with me when I really needed someone, and I'm still trying to figure out how to show my gratitude to her.  "Pay it forward" I guess.  After his 8 hours was up, I fed Daniel and then we went up to see Jonathan.  Yes, I was (justifiably) worried, and he was surprised when I told him that we'd be back in the morning so Daniel could donate more. The way it was explained to me is that because Jonathan is bigger and outweighs (or outweighed) Daniel at that time that he'd need more than what could be donated in an 8 hour period. The drive home was uneventful, but as soon as I got home, I had to drive Shilo back to work. I got home at 8PM and was asleep by 8:30.

Bone Marrow Donation Day 2 (3-9)

 Up at the buttcrack of dawn (5:45AM) and pretty much repeated the previous morning except the traffic was better, and I felt a little more confident and relaxed than the previous morning. I also knew that my girlfriend wasn't going to be with me until the afternoon, and that she would have her Dominant in tow as well. Since my stress level was low, I was actually able to enjoy the day and I visited Jonathan at lunchtime so he could get me food (at his insistence) and by the time I got back, my friends had arrived.  We had a relaxing conversation and when Daniel was finished, we all went to visit Jonathan to wait for the bone marrow transplant. They stayed for just a little while, but Jonathan's face lit up when he saw them, and, in turn, it made me happy.

The Bone Marrow Transplant (3-9) and Aftermath

The transplant was actually much less intense and exciting than I thought it would be. The oncologist came in and talked to us (including Jonathan's girlfriend) about how it is done (the same as a blood transfusion)and signs to look for.  Halfway through the first bag, I took Daniel home so he could recover from the excitement from the past two days. I woke up briefly at 8AM and gave Daniel his meds, and then slept until around 3PM. When I called Jonathan, he was very weak and sick feeling.

The Days Following

Because he was feeling so bad, I held off on calling Jonathan directly (I called the nursing station instead) until Saturday afternoon (3-12) and I told him I'd be there Sunday at 4:30. My ex-husband was leaving as I arrived, so I said a brief "hello" as he walked out. By this time, Jonathan had gone 2 weeks without adequate nutrition due to the vomiting, and the oncologist explained that he would be giving Jonathan the necessary nutrients via his IV.

The Past Week

I knew that Jonathan was feeling rotten, so I only called him and spoke to him twice. I took Daniel with me yesterday (3-20) and we arrived at 4:30 and stayed an hour with him. The change in the past week is remarkable (and not in a good way)  Jonathan is VERY sick, unable to eat anything. He's getting nutrients via IV to keep him alive, and he had a platelet transfusion early Sunday morning, and he will get another PLUS a regular blood transfusion early this morning (about 3AM)

Ask me if I'm worried? Well, a little bit. He hasn't been able to eat and hold down regular food for 3 weeks, and if he gets out of bed, he vomits. For the first time since his original diagnosis in October (5 months ago) he talked to me about dying, only this time instead of crying and saying he didn't want to die, he spoke about it in a very matter of fact way. I can't even express how much it disturbed me.  He also told me that he's tired of most people and that he was glad I didn't call him every day because all he wants to do is sleep. I told him that I will visit him every Sunday at 4:30 because it's the most convenient day for both of us.

My Thoughts

I'm thinking of meeting up with my ex-husband later in the week (after Wednesday) and discussing my concerns with him. I realize it won't change anything, but I think in this case, we really need to present a united front. I don't think he understands just how serious this is. I'm wondering if Jonathan made arrangements for when he dies (I mean, we're all going to die eventually) and I'm not even sure how to approach it. Parents shouldn't even have to think about stuff like this. Still, with Jonathan failing and his attitude, I have no choice but to consider this.

The Bright Side

Yes, there's a bright side! There is a good chance that this is temporary and Jonathan could get through this hell in the next few weeks and even have a full recovery. This is "just" a waiting game while his body adjusts to (yet another) change.

I saw my (new) Therapist/Doctor on Friday and I'm down to 201 lbs. I'm not dieting or starving myself, but I've changed what and how often I eat, and it's paying off. I really dislike changing Therapists, but my last one retired in January. Maybe the discomfort is related to having to open up to someone new. I don't hide my lifestyle, and sometimes they can be unintentionally judgey. Her only questions were about jealousy and/or abuse. I think I answered her concerns to her satisfaction.

Finally, Daniel hasn't had any issues/side effects from giving his donation, so he will be going home tomorrow (Tuesday) night. I think the past 3 weeks have been difficult on him because he misses his school. Also, in the remote possibility he has to do this again, he won't have to stay with me so long. We were extra-cautious because of his seizure disorder, but since it was so easy, we won't be as worried.

Now I can go to bed.

Last-Minute Update

Tomorrow morning, Daniel goes in to City of Hope for the bone marrow donation, He has been receiving daily injections of Neupogen from me, and tonight, because I was otherwise tied up, he injected himself. I can't begin to share how proud of him I am. He's been taking this very seriously, knowing that this could save Jonathan's life.

So, what's the change? Apparently, Jonathan won't be getting the transplant tomorrow after all. It seems that there's some additional processing/testing Daniel's bone marrow will need to go through, so Jonathan will get the transplant on Wednesday instead.  I'll find out what time Wednesday before I leave City of Hope tomorrow.

In the meantime, please keep my family (especially Jonathan and Daniel) in your thoughts and prayers,

Merry

Over The River And Into The Woods (3-3-16)

I haven't written much lately about my son Jonathan. Since his release from City of Hope on January 29^th, things have been somewhat quiet. I've taken Daniel (AKA: Child #4) there for consults because he's the only sibling that was a 100% match, and that in itself was a miracle. Still, there has been lots to do in preparation for the bone marrow donation and transplant. I drove Jonathan back to City of Hope on Monday (2-29), so they could prepare him for the transplant. Part of this is receiving radiation 4 times a day, plus strong chemotherapy. This will effectively kill all his immunity to illness, but it will also ensure that Daniel's bone marrow will be able to do it's job when Jonathan gets the transplant.

For the past 2 ½ weeks, Daniel has been on a high protein, low fat diet, and has been taking multivitamins with iron, and calcium supplements in addition to his regularly prescribed medication, which includes B-6 and D-3. He's also had to increase his fluid intake. This means I have to constantly remind him to drink both water and milk. Then he complains about needing to use the bathroom. Still, he understands how important it is for him to do all this, and he knows I'm on him about this because Jonathan's life is at stake.

I will repeat it again: 

Jonathan's life is at stake!  As a Mother, it scares the shit out of me. Even with all the treatments, blood transfusions, chemotherapy, and soon-to-be bone marrow transplant, Jonathan might die. Yes, he was able to walk by the river, but he's gone right back into the dark woods! The emotional ups and downs have left me feeling shattered at times. Still, right now, I have to be strong and put on my “brave mommy face.” I don't have time to be sad, feel vulnerable, or even cry. Honestly, I'm not sure if I could cry. I've cried so much since that day in early October, that I wonder if I even have tears left.

So, here we are. After I took Jonathan to City of Hope, I picked up Daniel and he will be with me until about March 20^th. Tomorrow (Friday 3-4) we will go to City of Hope so we can start the process so Daniel can donate his bone marrow. Every day until Monday, I will be injecting Daniel with Neupogen so his bones will produce bone marrow stem cells. On Tuesday morning, I will take him to City of Hope where they will harvest those cells by taking blood from him. This will take about 8 hours. I can stay with him the whole time, but I'm not sure if I'll be able to handle the stress. For those of you who offered to sit with me in the beginning, and I politely turned you down, I think I'm ready to accept the offers now. Tuesday will be a LONG day, and the distraction will be most welcome.

Once the cells are removed, Jonathan will get the transplant via a transfusion. My plan is to stay until that is finished as well. I can't begin to express my gratitude for all the encouragement I've received from everyone and I'm reminded how fortunate I am. Still, I will take my chances, and ask for something more: If you are healthy and you have O+ blood, and you live in the Southern California area, and you are willing to donate blood on his behalf, please leave a comment, and I will tell you how you can help out Jonathan and people like him. If you are any other blood type, your help would be appreciated as well.

Kinky

Something's happened. Something's changed. It's left me with very mixed emotions.

Looking back, this is probably the last thing I could have imagined. I acknowledge that I'm constantly learning and evolving/changing. The changes of the past 6 months have more to do with it than I imagined, and I've been helpless to fix or change most of it. Deaths, illness, accidents and disasters. I've been living it.People have generously offered to help me, but I honestly didn't/don't know what kind of help I need. Medical bills have piled up, and I don't like feeling like I owe people money. Never mind the utility bills as well. Between my 911 heart attack scare that included an ambulance ride, Shilo falling and breaking his ankle on the way up to a local dungeon in October that still hasn't properly healed, and my fall that included broken ribs that still hurt, I'm not in very good physical condition. However, I have managed to lose a few pounds. Still, feeling sexy/sexual/desired has gone out the window. The nearly constant discomfort coupled with a lack of desire has affected me.

I don't want anyone feeling sad or sorry for me, and I don't want sympathy either. I just want to do an emotional dump because it's overdue.

Soo... Back to kinky. Kinky has gone out the window. Actively participating in BDSM with Shilo and occasionally Stitch did something for me. I felt alive and we all enjoyed ourselves. I don't feel that any more. I don't feel vanilla either. It's like I'm just existing, waiting for something. So, imagine my excitement when Shilo hinted that he was feeling well enough fora disciplinary session last week. It was heavy on my mind, and we discussed it in depth this morning as I drove him home from work. I picked out a few implements and did my best, watching his pale soft skin turn a bright blood-red color, I checked in with him often, and the look of satisfaction on his face was nice, but all I wanted to do was go back to sleep.

It leaves me asking where Mistress Merry went.  No gleeful laughter on my part, and I didn't demand anything either. FUCK!!! Who is this that took over my body and emotions anyway? She's not much fun! Did I hear someone in the audience ask if I wanted to try submitting? No, I definitely don't want that! Been there many years ago. It's not for me. No, I just want the old me back.

If you happen to see her, can you please tell her I want her to return? Thank you!

Something to Think About

I mentioned in my previous post my desire to reconnect with certain family members, but I really haven't acted on it. There's just so much other things to do, so the "priority level" isn't as high. I still have 11 months till the end of this year to make an effort. Don't get me wrong... I have made a few tiny moves towards doing it, but there's still the fear of rejection. I still hold certain people at an arms length due to me still nursing my hurt feelings, but I'm working on that as well. Like I wrote before, it's a desire, not a need.

I also decided in December I'd do a "Happy/Funny" jar of events in my life, so when I feel sad or bad, I can refer back to those events. I don't have something for every day, but I'm fine with that. I also don't have a jar. Instead, I have a Document on my computer for it. Some days (like Friday, for example) I have more than one thing, so it makes up for those less than stellar days.

I also try to remind myself of all the skills I learned last year, especially where it comes to Shilo's need for gluten free foods. I even have a few personal favorites that I've learned to make, such as gluten free chocolate peanut butter pie, and gluten free potatoes au gratin. Honestly, most of my cooking was gluten free to begin with, and I was surprised to find that out. It was mostly prepackaged foods that have gluten in them, so I have to read labels. Of course, I still eat food with gluten in it (I love my bread!) as does Stitch, but we try to eat those things when Shilo is at work. Naturally, I work hard to ensure that I always make as many items as possible gluten free, because I hate to see Shilo in gastrointestinal distress or sad that he can't have something I've made.

My son, Jonathan, has gotten occasional "breaks" from being in the hospital by his Oncologist at City of Hope Hospital, but just recently spent 8 days in getting more chemo. He was released last night, and I drove him home.  He's gearing up for his planned bone marrow transplant in February. He also told me that they are discussing radiation as well. I'm just happy that he's gotten better than he was, and his attitude is so positive. I attribute this to the power of prayers and positive healing thoughts that he's received.

I'm not sure if I mentioned that Child #4 (my disabled son, Daniel) was a 100% match for Jonathan in my previous post, so I'll mention it now. His Neurologist has approved for him to be the Donor, (and Daniel has expressed a desire to do so) but the Transplant Team at City of Hope Hospital has to approve it. Let's all hope and pray it works out! No matter what, though, I will say that this demonstrates the Love my kids have for each other. Yes, there is one that was/is negative about this, and balked at being tested, but the others have shown so much Love, that it doesn't matter.

Please continue to keep my Family and Household in your thoughts. Thank you!

New Year, New ME?

Not really... I'm still me, and still recovering from my accident of Friday, November 13th. Ribs still hurt, and trying to get comfortable in bed is a bitch.

My son Jonathan is feeling/doing better, thanks to the Team at City of Hope Hospital. It's a long process, but I trust it will work.

Again, for the God-knows-how-many years in a row, I've purposely avoided making resolutions, simply because they usually wind up disappointing me, but I have decided that it's time for me to make an effort to mend fences and/or rebuild bridges. Dealing with the possibility of Jon's imminent death reminded me that even though I might not get along with a family member, they're still my family, and we all want(ed) Jonathan to get better.  We shared the same goal, so perhaps putting aside our differences would be a good thing. My Mom has been dead for three years now, and she was the glue that held us together.  Maybe it's time for us to try to get along and have a little face time. I'm sure it would make life a little better, especially if we approached it from  the outlook that we share a common goal. It's just an idea in my head that I've vocalized only a few times in the past 18 days. There are other people who aren't family, but it's all in the thinking phase.

In other news, I weighed in on Friday (1-15) at 204 pounds! It's been a long time since I weighed so little, but I'm hoping that losing weight is a trend that will continue. No real diet, no real effort on my part, just a switch to my eating schedule. I've reduced my snacks and absent-mindedly eating. I stop when I'm satisfied, and let Donna (the pit bull) eat what's left. Yes, I still eat junk food on occasion, but I rarely desire it.

My Psychiatrist/Therapist told me a few months ago that he was retiring at the end of January, which was a huge shock to me. I had no idea he was so close to 65. I honestly thought he was close to, or just barely 50, but it's not like I asked him. My final appointment was on the aforementioned date. I didn't spend long with him on Friday, but I did tell him that I'd miss him. I've opened up more with him than I did with anyone else, so it's a huge loss for me. I really dislike change, and seeing someone new causes me LOTS of discomfort and anxiety, but I've met my new (to me) Psychiatrist/Therapist before at an activity, so I'm hoping it will go smoothly. I guess as long as she follows my two guidelines (1. I only call in a real emergency, so please take it seriously and return the call immediately, and 2. Don't fuck with my medication) and doesn't judge my lifestyle choices, we'll get along just fine.

Shilo is still recovering from his broken ankle, so I still do all the driving. I've adjusted my sleep cycle (another reason for the weight loss?) and I will admit, I feel better emotionally than I have in any other previous January in recent memory.

Stitch? Well Stitch is Stitch, only his hearing and memory loss is getting worse. Shilo occasionally jokes about Stitch forgetting the way home, but it seems to be an inevitable thing for him. I worry, but what can I do? I try my best to make sure he's happy, and I remind him of my Love for him as often as possible. His only child will be a first-time parent in March, and there was a baby shower this past weekend, Stitch is soo excited, and we had a nice time. His ex-wife was there, and thanks to our kids being friends for 20(!!!) years, we get along just fine. Honestly, I understand why they got divorced, and because I know his side, and can completely relate to her side, there's no animosity at all. Besides, our kids set us up, and I think they knew what they were doing. It's been nearly 12 years now, and while there have been adjustments and changes, we're all happy.

So, that's my update. Happy New Year!
♥
Merry