The rest of it all (with a bit of pretty at the end).
Dayne’s father died a few months back and he’s never quite rebounded. He was there with his dad right up until he took his last breath and was the only one in that messed up family able to make the hard decisions that needed making. It was emotionally raw and tragic for Dayne and he fell apart in a way I’d never quite seen before. It scared the crap out of me, honestly, as Dayne is the strong one. He’s the one who protects us all and keeps us safe from all physical and emotional threats out there. To see him down was terrifying.
If you read previous posts (there are a lot I just drafted and didn’t publish so I’m not sure exactly how much I’ve shared here) there was a renewed engagement with his half sisters and step mother for a brief period as they united in their grief. I was worried about the expectations that were being hinted at….that we would be in close touch with two sisters I really don’t much like (for many reasons, most of which involve their treatment of Dayne for all of their lives) and that we would be starting to visit his step mother. I make no secret of my distrust and general dislike of these people (to Dayne, of course, not to them directly) but I told him I was willing to take part in whatever he felt he needed….whatever what he thought was best for him and our son. I reached out to them all after George died and was either rebuffed or was sent a long list of complaints about how Dayne wasn’t living up to their needs. He did try to offer them as much support as he could, even going to visit his step mom on several occasions, but they all started up the same old bullshit and the lies began to pour from their mouths.
The step mother said one thing about George’s belongings and estate to Dayne, another to the sisters. We were told everything of his was gone…sold and given away so there was nothing left for Dayne. The sisters were allowed into the house to take whatever they wanted of their father’s, provided the mother wasn’t wanting it. George had a lot of computer and electronic things that Dayne would have enjoyed playing with and/or just having, knowing his dad had treasured them, but it was not to be for him. In the end, all he asked for was one of his dad’s work shirts, a portion of his ashes and his old, favourite coffee mug. The shirt was given to his sister, the mug is nowhere to be seen and the ashes are being held for ransom at the step mother’s house. Dayne is struggling between trying to do what he knows his dad would have wanted and to protect himself from more pain delivered by the hands of these women who spent so much time hurting him.
As it stands right now, we have nothing of George’s and we’re not sure that anything at all will come our way. Dayne is making peace in his own way but, seeing the outright terror in my eyes at the suggestion of making these people a part of our inner circle and having them become actual family, he’s not really talking about it much with me. It’s hard. I want to be there for him (and I am) but he wants to protect me. He wants to talk to his dad or his best friend, both dead and gone, about these things and not lay them on my lap to deal with along with the rest of our lives. I’m trying to support him in every way I can.
Work is stressful for him too and he brings that home too. It’s too much…all the stress of his work, my work, Colt’s future, his dad dying (and grandmother shortly thereafter, although, Dayne’s mother insists that she was NOT his grandmother as he is NOT her son). Throw in the medical soup I’m currently swimming in and we’re overwhelmed. I just want to find a way out of this for all of us….run away somehow and not face all this stress day after day. In the end, we mostly sit and don’t talk about these things, choosing to treasure the precious moments when we can be a family without death and work and disability and disease clouding everything over.
The narcolepsy is sort of under control for me right now. Stress makes it worse so yay me….*sigh* The nightmares are not as bad and the sleep walking has slowed dramatically since taking a sedative at night to make me crash. The Modafinil is keeping me mostly awake through my days but the stress at work is making me feel like I’m going to have a freaking heart attack if I take my afternoon dose through a stressful moment.
The arthritis is making me want to rip my entire skeleton out of my body and stomp on it until its gone. Spring is hard. I’m in so much pain I can barely stand it some days. My spine, neck, shoulders, neck, jaw, face and head are never quiet and even when I up the pain meds and anti-inflammatory meds I only get the edge off long enough to have my entire focus on it all day. It hurts to sit, stand and lie down. I have seriously limited mobility in my neck and just….owww. Everything hurts. Everything inside, everything outside. Nerves are screaming down my arms from my shoulders, through my face from my neck, down my legs from my lower back. Double sciatica and a funky new foot drop that accompanies has made coping with the rest all the more fun. I need more meds to keep this under control but the pain meds are sedating which throws off the narcolepsy issues and I end up stressed, heart pounding in my chest, exhausted, nearly falling asleep on my feet and in so much pain I can’t even figure out what to do to relieve it….even for a moment. Luckily, the night meds keep me down so I don’t wake up every five minutes in pain…..that said, waking up is dreadful and takes far too many moans, groans and agonizing movements for someone my age. My spine feels like it’s all bone-on-bone from the very top to mid shoulder and then I have two particularly painful areas thoracic and lumbar. My doc wants a new MRI but I’m not too anxious to get it done. I know the drill by now….I do the tests, they look at them, they say “woah that’s a lot of degeneration for someone your age” and then I’m told I can either up my meds or cope. I don’t really get to up my meds without worsening the sleepiness, which is already freaking terrible, so I just go on, as I was, just with more pain.
So hooray. I’m tired; still dreaming; exhausted; stressed; worried; worried about Dayne; worried about Colt; worried about work; in pain from head to toe and basically just living from day-to-day because I don’t have a good enough reason not to.
Now, time to sleep. As long as I can keep the depression at bay, I’ll make it through all this. The good news is that we bought a gorgeous gazebo for the back patio and it is up, decorated and feels like an escape from everything out there in the shaded sunshine. My photos are keeping me going – some are so beautiful they surprise me. That’s a wonderful thing to be thankful for. Dayne found me a photo printer and surprised me last week so I’ve been running it dry for days. I’m going to surround myself with images I love until something changes and I can let go of some of this horror I’m dragging around with me. Here’s a few I put up at work to help me remember the good in life:
I use photography to lose myself in moment of beauty and OMG I have just taken about 300 photos that are so lovely I can’t stop the slide show of them going over and over my computer screen. I usually only post photos to my photo blog, but these ones I wanted to share with you guys. I hope they bring you as much peace as they do me. xx
I need to write a post on a specific kind of meditative photography Birdie told me about last week. It’s AMAZING in concept and it echoes so much of what I already love about taking pictures. Will try to catch you up soon.
So…I’m kinda down. Kind of worried too. I get this way now and then and it usually passes but I find myself operating on the periphery of my life just to make sure things keep going along as they should while, really, I’m feeling pretty terrible.
I had an appointment with my rheumatologist the other day. About three years ago my GP sent me to see her as a new patient, hoping to find an answer for some of the pain I was having. They didn’t know about my spine then so it was still all rather vague and everyone kept wanting to diagnose me with fibromyalgia. I was sent to see a fibro specialist twice and both times he discharged me, telling me that I had absolutely no symptoms of fibro, even though the wide-spread pain seemed familiar…it just wasn’t what was getting me. Anyway, this rheumatologist saw me and was very concerned right off the bat. She was talking about all kinds of auto immune diseases that it seemed like I might be suffering from and ordered up a huge panel of blood tests. When I returned for the results I was told that it was good news – everything came back okay. There was no rheumatoid arthritis, no lupus, nothing obviously auto immune going on. So….I was happy about that, of course, but also a little dismayed. I’d been seen by so many specialists at that point I was giving up on diagnosis. When she told me about the blood test she was pretty curt and then mumbled something about a fibromyalgia pain clinic that she thought I might get some good from and left the room. She didn’t come back…just up and walked out, leaving her resident behind with a baffled look on her face. I was upset and left, in tears, all the way through the waiting area. I felt like she had dismissed me and that all of my concerns were just blown off. I was having trouble walking (had terrible bilateral sciatica then…all nerve related because of my spine but I didn’t know why my legs hurt so much back then) but I hurried out anyway and vowed I was done with specialists. I didn’t want to see any more of them about this…ever. I cancelled my one year follow up that she scheduled for me and just went on with things.
Years later, my GP decided that she wanted me to see her again to see if anything had changed of if she had any new recommendations for medication that I might try. I went back and was met with the same concern and compassion…she talked about all the auto immune issues that I might be facing and took a huge lot of blood work for testing. She had a look at my most recent MRI’s and said that nothing seemed to have changed too much with my cervical spine and the osteoarthritis present there so that was good. She doesn’t really like to prescribe much in the way of pain killers for OA so she had nothing to add there. One of the worst symptoms I have with the OA is headaches that come from the nerve pain (I think) and muscle changes that result from the compression and degeneration in my cervical spine and my body’s attempt to protect my damaged parts. Headaches are not a part of the treatment set for rheumatology so they don’t even want to hear about it. “Not our area” I was told, again when I mentioned it. Her newest resident came into see me for my follow up, as they usually do to collect all the info and then the consulting doc joins afterwards to make sure the residents get as much experience as possible.
“So, have you been looked at for fibromyalgia?” Was her first question.
I must have looked dismayed because she quickly carried on. She basically told me that the OA seemed to be the same as it was last time we checked and that, if the meds I’m on now are taking the edge off the pain and making it manageable, that was about as good as it was going to get, pain control wise. They had no recommendations for changes there. As for the rest of me, they still had no idea. The markers were not found for lupus, again, and even though the RH levels were higher than normal, I didn’t fit the criteria for RH. It was good that none of that stuff showed up but I could feel a dismissal coming and I braced for it.
In the end, after seeing the actual rheumatologist, everything was repeated to me to be sure that I understood. They were not going to recommend anything medication wise. They said that if I could work full time, I was fine, despite being in pain all the time. As long as the meds I’m on now are taking the edge off, that was all I was going to be getting. Then she walloped me with the next bit though….I totally wasn’t expecting it.
“I’ve been talking to the sleep specialist who will be doing your study and we’ve concluded that much of your pain is likely due to whatever sleeping issue you’ve been having. Quality of sleep can greatly affect the body’s ability to cope with pain and there are many studies supporting that. We think, barring any surprising results, that your sleep study will answer most of the questions you have and, hopefully, will be something that can be treated to improve it so you end up with a reduction in pain from the OA.”
…. huh. Okay. I get that….I truly do, however, it was TEN years ago that I started this quest to find out what was going on with my body. Yes, I’ve had sleep issues all my life but it’s only been a year and a half that I’ve been passing out on my feet, falling asleep at work, struggling to hold onto consciousness after I’ve been awake for a couple of hours every day. The pain started ten years ago. I do know the cause of much of it, now that I know what’s been going on with my spine, but there’s nothing that can be done for that, I keep getting told. Nothing. I’ve seen a neurosurgeon and an orthopedic surgeon and neither can do anything surgically to help so I’m left with pain management, however, no one is interested in helping me manage it beyond ‘taking the edge off so I can keep working’.
Okay. All things considered, I wasn’t seeing her again for the pain. I’ve accepted that this is what my life will feel like, pain-wise, for the rest of time and it will only get worse from here. I realize there is no miracle cure or medicine that will help and that I just have to focus myself on moving forward without giving into it until I can’t anymore and, most certainly, the sleep issue is what is causing me the most difficulty right now. The thing that is really bothering me is that the rheumatologist is trying to blame the pain on the sleep issue.
Why is it that having OA all through my spine, disc degeneration in my entire cervical and much of my thoracic and lumbar spine is not enough of a reason for these people? Are there patients all over the place with this condition that have no pain at all? All the docs seem to be looking for a different reason for my pain. They attribute much of it to my spine and then just say ‘well, that is what it is” and we move on. I have joint pain all the time in most of my joints but, aside from arthritis in my shoulders, there’s nothing else going on. I’ve given up on looking for a reason for that since no one seems to think it important, and now docs are telling me that my sleep issues are to blame. For joint pain? Sleep issues are to blame for bilateral joint pain?
Here’s where I get all messed up in the head. Maybe, if all of the pain I feel is being caused by..well, nothing….it’s not really there. I’ve tried this angle many times….even went to see a psychiatrist about it (which totally screwed me for years because that psych visit on my patient record instantly made many docs dismiss my case) and he seemed to think it was unrelated. He totally agreed with the PTSD and attachment disorder but it’s rather unlikely that either of those would cause joint pain. But….now I’m fucking terrified that I’ll go for this sleep study and they will find nothing. Nothing will be wrong, nothing will show up and nothing will be done. They will all look at me like I’m crazy, like many of the previous docs did, and they’ll be pissed that they wasted their time doing such in depth testing on someone who has nothing wrong with her. Yesterday, I didn’t take the stimulants. I wanted to see what would happen if I missed them for several days in a row….kind of to prove that there really is something wrong with me. I started crashing around 11 and by the time 2 pm rolled around I was struggling to keep myself awake. Walking around outside in the freezing cold, running up and down the stairs, splashing cold water on my face, drinking coffee, working standing-up in my office…nothing helped. My eyes would close on their own and I’d start to dream….hear things and see things…the scene in front of my eyes would change from reality to a dream scape and I’d be sleeping and waking and sleeping and waking every time I stopped fighting, even for a second. I got home after work and lay down on my couch and fell asleep….slept from 5:00 pm through to 630 this morning and could have gone much, much longer had I the opportunity. I’m wiped out today and I have a blazing headache…pain all through my body too. I’m worried it’s just a withdrawal effect from the meds though so I’m going to stay off them for the rest of the week to see if I improve. I’m really, really worried that nothing will come of this and then I’ll be dismissed by everyone….forever. So, I have OA in my spine and I keep getting told that’s “all” that’s wrong with me, aside an obvious sleep issue which I’m now worried I don’t actually have. It’s not normal for people to feel this way though so….I don’t know. I just don’t know. I’ve fought so fucking hard to overcome the depression/anxiety and ptsd crap. I’ve dealt with the pain and will continue to do so. I’m trying so damn hard to keep everything going …. if this sleep thing comes up with nothing that I didn’t already know I’m done. I’m sick of feeling like I’m wasting everyone’s time with this stuff. It’s embarrassing.
I guess this is just the way it is. I’m afraid to hope for anything to be found so that I can get back to living a relatively normal life again. Maybe this is just my normal. I wish it wasn’t so damn hard to work with, is all.
Bah. Fuck it. Time to work then I’ll go home and sleep again. Maybe that’s all I’ll ever do.
If I already wrote and posted this, forgive me. I can’t quite get my head straight today. So tired. *Yawns*
I think I’ve written that I finally got myself a sleep study date? I gave up calling and calling the respirologist’s office (the secretary wasn’t answering for me – I knew she was there but she didn’t pick up or even open her email. Grrrr). I eventually, near my last day of work before Christmas, just called the sleep clinic itself, knowing it would be them who made the actual appointment when it finally happened. We played phone tag for a few hours but when we connected the woman on the other end was so compassionate and understanding she almost made up for the bullshit of having to chase these docs around for a year.
The reason for this particular delay in scheduling was that it was a complex study she was trying to book me in for that would take over a full day. She needed to have techs and the fellow I saw available not only for an overnight study, but also for a full day following. They will be admitting me at 8 pm one evening in March (the earliest time that would work at all) and I’ll be hooked up for a regular overnight study where they monitor my vitals with electrodes and watch my brain as I move through sleep stages…or don’t move through, depending on what’s going on. They will be waking me early in the morning but I’m not going home at that point…I have to stay for a full day following and they are going to have me nap throughout so they can monitor my o2 sat and sleep cycles through the day while I have that blasted sleepiness crawling all over me. No meds, of course, so it will be just sleepy me. The clerk told me to bring a laptop and some books…things to do so I’m not just sitting there for my awake periods. I laughed and told her I could likely sleep straight through if they wanted but she didn’t laugh back.
“Oh my. That must be horrible…feeling like that all the time.” she said.
I nearly burst into tears. lol…*sigh* It’s nice to be understood for once.
So, they will be waking me during my daytime naps at different points to monitor my physical reactions. They want to get me in REM as many times as they can but I don’t think they realize that I’m almost constantly dreaming. It should be interesting for them, at the very least.
Looking into it more, it seems that this type of study is done more for suspect narcolepsy or other underlying conditions, as they can pinpoint sleep apnea pretty quickly on a regular overnight study. I suppose that if I’m obviously suffering from that they will just discharge me in the morning…
I’m happy about this. They are taking this very seriously, I think. I’ve looked back through the sleep study records that are publicly accessible (I can’t look into anything using work or my connections there as it’s a breach of privacy and totally not allowed) and I think they only do about 5-10 of these per year. We are a huge organization…two massive teaching hospitals connected to a very well respected medical school, three rehab homes including a vet centre and two long term care facilities, a regional cancer center and a children’s hospital that is rivaled only by Sick Kids in Toronto (where I started my premature life!). That they only do so few per year means they’re taking me very seriously indeed.
So yay for that. Maybe 2016 will hold some answers for me and I can get back to a more normal life? Fingers Crossed.
I have a particularly difficult time reaching out to people when I’m not feeling well in the head…I can talk about the physical stuff with greater ease because pretty much everyone can identify with that and it’s not so scary to listen to…it’s just human. The emotional/mental health stuff seems to take on a sort of threat to people….or maybe it’s just my perception of things…those are often slanted through PTSD goggles so I’m never 100 percent sure I can trust them. I am a dweller by nature which becomes obvious quickly to those who come to care about me, so I understand their aversion; they don’t want to watch me drown myself in misery when they know I can work with it on a much better and healthier level. Still though, I don’t feel much like I can change that. I can stop talking about it, certainly, and can just put on a different face and go about my day, but that does not change how I feel, just how I appear. Is that better? I suppose it is to the person who is desperately back peddling out of my line of sight to avoid the conversation I’m trying to have with them. Generally, I just don’t start the conversation in the first place. I feel like I’m treating a friend as my therapist when I do that and I don’t think that’s fair, so I just keep the thoughts inside me. Mike used to say thoughtless things about how he was providing me with free therapy when I went to him feeling troubled. It made me never want to share anything with him again, but, I think that was his point. Anyway….I’m sure you understand what I’m saying, it’s hard when there’s no one to talk to and you want to talk. Although I don’t suppose there is anything to talk about. I feel crappy and that’s about it. If you know me and happen to care about me, you probably already know why so what’s the point of rehashing it all outside of my head again? It will just end up making you feel worse and me feel the same in the end.
My rheumatology appointment went much better than anticipated yesterday. I think my family doc must have said something about how must my last visit upset me because the formerly rude and dismissive rheumatologist was very kind and supportive. She showed renewed interest in my case and talked about future planning to get things under control. She thinks the exhaustion and fatigue has to do with whatever underlying issues I have going on.
“Your spine is terrible and your headaches, neck and shoulder pain are clearly coming from that issue,” she said. “but if we take your spine and head out of the mix, you are still left with a lot of complicated and ongoing issues to deal with. I want to figure out what is causing those things.”
The spinal stuff can’t be helped, I know that. Surgically there is no option so it’s a matter of pain control and trying not to lose too much range and mobility between now and when I’m finished with this body. It will only get worse, not better, so my coping skills are going to have to continue to increase as I go. I think I can do that for a while yet, so no worries there for the immediate future. “The rest” as far as my doctor saw it includes the joint pain, the weird discolouration of my arms and legs when I get cold, the constant overheating and hot flashes (which, although related to hormonal changes in my body, are not necessarily related to peri-menopause like my GP thinks, says my rheumatologist), the depression to a degree and the excessive sleep/fatigue/exhaustion issues. “But I’m not *fatigued*,” I told her. “I’m shutting down; dropping off to sleep on my feet. I’m losing consciousness while I fight to stay awake in the middle of talking to someone at noon with a coffee in my hand and 20mg of Dexedrine in me.”
“Yes, but if you’re not sleeping at night, and by that I mean restful sleep, not this pain or dream interrupted, waking every 20 minutes sleep you describe, what else do you think is going to happen? Your body shuts down because it needs rest.”
She made sense there. I imagined just staying awake for weeks on end without all the other complications and can imagine my body would shut down much like it wants to do right now.
“Do you feel rested when you wake up? Even after a 20 hour sleep?” She asked.
“Maybe for a few hours. I’m not sure though….I’m not sure ‘rested’ is the right word, but I’m not actively fighting sleep immediately upon waking.”
She just stared at me with her head cocked to one side, waiting for me to catch up to her. I saw her point. She went on to tell me that fatigue is important when it comes to the body’s ability to fight pain.
So, in the end, she was pleased to hear about the sleep consult next week. She also happily pulled up all my blood work from last appointment and said she was going to repeat all the tests to see if anything has even slightly changed. She’ll see me back in six weeks and we will go from there, she says. They took vials of blood from me and I left the clinic feeling spacey and exhausted then I went home after work and slept from 5 pm until the alarm went off at 6 am the next day feeling like I’d just gone to bed.
I’m feeling pretty lost in all of this right now. Work is nothing but stress and a pounding sense of failure, home is fear and stress and guilt that we haven’t managed to provide Colt with more stability than one single family of people who we can no longer count on like we have all these years. Things with Dayne are fine but he is one to roll with the punches in life. We could pretty much not speak to each other for a year and nothing would really change between us. He’s as solid as a rock, that man, and I know he will always, always, always have my back.
I’m a little depressed, a lot in pain and everything else feels suspended in the air.