Links for help on a day like today

If you are struggling today (or any day)…reach out for help.

 https://www.facebook.com/AFSPnational/photos/a.69058467304.61653.27817332304/10155670794262305/?type=3&theater 

And also, this article is helpful:

http://mashable.com/2017/10/02/las-vegas-shooting-emotional-coping-mental-health/

 

Purpose and control

I was watching television and a character said he became a doctor because it was always his way to try to control things. Being a doctor made him feel he was in control of his life and his patients’ lives.

I was sitting there watching and it was like one of those AHA! moments. I started wondering if my fiction writing (which I’d been doing since I was a pre-teen) was my way of controlling things in my life. Or finding a way to have control in a world where I really had no control, especially when I first became sick…which is when I started intensely on my writing career and when I was first published.

When I talked about this with T, it also made sense as to why I haven’t been able to write very much in the last few years. I’ve worked so hard to release my idea of controlling everything, and so my default way of writing–and seeing my writing–is no longer the same. T said she could see exactly what I was dealing with, and she felt the discovery was a very interesting and insightful one. I’m not sure how I will be able to write again, but T thinks I’ll find a way. I certainly don’t want to go backward in order to find my ability to write again, but as I am now, I feel like my solace in writing is gone. I used to be able to disappear into my books and create lives and worlds where everything was the way I wanted it to be. But now, where I see that control really is an illusion–even though I’m still working on that in my own life–I’m not sure how to create stories the way I used to.

At the moment, I even feel like I’m struggling to get my ideas across in this post. I feel jumbled and like the words I want are not here. It’s sad and disappointing right now. The thing that I always went to feels like it’s well and truly gone. I mean, I know I haven’t worked on any of my books in recent years, nor have I really started anything new of note, but I guess I thought it would still be there to save me.

It sounds dramatic, but really my writing did save me when I got sick. There were days I never made it out of bed except to go to the bathroom, and yet those were the days where I wrote my books. Those were the most productive days of my writing career. Through pain and vertigo and fatigue…I wrote my books. I wrote deep into the night, hours and hours at a time, and slept through until noon. I would eat lunch and then go back to my writing. It kept me sane, it gave me a life to live when I couldn’t live my own life. My hands would cramp, my arms would ache (I wrote my books in longhand), my neck would hurt…but I kept writing. That was the first time I ever wrote a full-length book, and it was the first time I persisted in finding a publisher for that book.

And here I am, in need of that solace, and unable to find it.

I’m not the same person I was, no question about it. I just don’t know how to be the person I am and still have the purpose I had then.

 

Finding connections

I wasn’t sure what to do this year about mother’s day. Last year I sent Hub off to his mother’s house without me, and I spent part of the day with my brother and his then wife (now ex-wife). I talked with T about this on Friday, because I feel some guilt about not going to my mother-in-law’s to be with her, but I just am not ready yet this year. I know she understands–as does Hub–but I am at heart a people-pleaser, and so the guilt sat heavy with me. In the end, though, I couldn’t make myself go.

My father had mentioned to me Friday evening that he was going to go to the cemetery to visit my mother’s grave and he asked if I wanted to go. I didn’t answer him at that point, but Sunday morning when I saw him, he brought it up again. He said he knew it made me feel “uncomfortable”, but he wanted to make the offer for me to join him. I tried to be gentle in responding when I said to him, “I don’t feel uncomfortable about going, but the truth is, I don’t feel a connection to Mom there. I don’t feel it to Nana and Papa, either…it doesn’t work that way for me.” (my grandparents are buried in the plots next to my mother). For real, I feel more of a connection to my mother in her “den” closet, where she had a bunch of books stashed on a bookshelf…gardening, trees, cookbooks…I stumbled on them at one point and ended up crying. Because that’s my mother. The cemetery is just a marker for her physical body’s last resting place, but it has no history for me with her. My father only said OK and that he was okay to go alone, which I had to trust was true.

Somewhere around ten a.m., I texted my brother (the one with the ex-wife) to see what he was doing that afternoon. He said “nothing”, so I asked if he wanted to do something. What I really wanted to do was go back to the nursery where Mom and I used to go all the time, and where he and I went after she died. I also offered up the opportunity for him to come to my house to help me bake peanut butter cookies, which he (and my other brother) scarf up as fast as I can make them. His response was a preference to go to the garden center, so in some corner of my mind I knew it was the right thing to do. Even Hub said as much when I told him my plans for the afternoon while he was with his mother…he said my mom would be happy to know I was spending time there with my brother.

So after lunch, my brother and I set out for the nursery, which is about 20 minutes away. We talked a lot in the car about how he’s been doing with his depression and his medication, as well as some other health issues he’s dealing with. But once at the nursery, we talked about plants. We walked around the big place for about two hours–which leaves me exhausted and in pain today unfortunately–just chattering and touching plants and gagging over the high prices. We bought absolutely nothing, but it was worth the time and energy and pain, because it felt right. This brother and I, we have always been the closest of the siblings–with the exception of his married life where he withdrew from the whole family…and even then I tried to stay in touch with him as much as it was possible–so this connection felt good to renew. I know he’s struggling with his depression and his newly single life and his desire for a partner and…well, lots of stuff. And part of today was to remind him that he’s not alone. Doing that for my mom and for him made the day work for me.

I miss my mother so terribly. Every day. I feel like my identity without her has been lost. I don’t know how to get it back…yet. I’m still searching, and maybe someday I’ll find my purpose again.

I described (to T and a friend) the run-up to mother’s day as “being poked with a cattle prod when you’re already on fire”…and it’s true. That’s so much how I felt with all the television commercials and the holiday displays in all the stores and the radio commercials and facebook and instagram and on and on. I worry that it will always feel this way, this painful, this sad, this lost. Living without my mom has changed my life and changed me at my core. I don’t know how to adjust to that, or that adjustment is even possible. Somehow, I have to find a way forward. Last night I watched Bad Moms on television while Hub was still at his mother’s. There’s a point in the movie where Mila Kunis is talking to her movie daughter and she basically says, “I know you can make it through this because I’m your mother and I know what you’re made of.” It was such a dumb, funny, stupid, crazy movie, but that scene and those words (which I can’t remember exactly) really hit me hard. I know my mother believed in me and believed in my strength and my ability to persist. I hope I can find a way to continue to make her proud in that aspect as I try to find my way.

---

 

As a minor update, I finished all my bactrim pills successfully. I don’t know how much I feel better, but so far it seems the smell is gone, so I take that as success. I wasn’t too much more itchy the last day and half, so that was good. My stomach isn’t entirely back to normal yet, but I know the bactrim stays in your system for several days following the last pill. So hopefully another couple of days and my stomach will be better.

 

March not better

I thought February was bad. March has been worse.

I’m feeling so shitty, I can’t even. Period. I spend much of my days fighting the nausea and the fatigue…I’m exhausted before I get going. And now…and now, my imbalance is back in a big way. I’m struggling to walk without falling over, and I’m back to touching walls and handrails and tables and whatever in order to keep myself stable. This is a huge slide backward for me, as I haven’t had this kind of imbalance in quite some time.

I went back to the doctor AGAIN because I’m still exhausted and I’m still nauseated. She told me I was acting better this time versus the last visit, but she’s still thinking I have a virus that I need to just “wait out”. She sent me for more blood work (ANA, rheumatoid arthritis, lyme, iron, b12), but everything came back normal. My b12 is a tad on the low side for my history but still in the normal range. I’ve ordered my b12 sublingual pills and will start them ASAP. Maybe it’s that, maybe it’s stress and grief, maybe it’s something else. I have no idea and apparently neither does my doctor. She said to drink more water and walk outside for 20-30 minutes a day. She says dehydration can cause nausea–and maybe it can–but my drinking habits haven’t altered much. Except now I feel like shit and so I don’t want to do anything, including drink. If I go walk outside my allergies will get worse and I’ll have more breathing trouble and more snot and more post-nasal drip and more nausea. The doctor didn’t care for that and told me to do it anyway, that being outside and walking will make me feel better and get rid of my fatigue. I’m not eating much because I’m so nauseated all the time. I rush through eating what I can before I feel like I can’t put anything else in my mouth at both lunch and dinner, then I leave my dishes in the sink and go back to the couch.

I spend most of my days on the couch, barely even bothering to look at my computer. I try to stay upright, but I’m so exhausted all the time that I end up stretched out and wishing that the day was just over. I don’t know why I wish for that because at this point tomorrow will be much of the same. I feel like I’m sliding into this despair of thinking that I’ll never feel better. That it will always be like this. I am trying to push past the exhaustion and do stuff–I did three loads of laundry on Sunday–in the hopes that if I ignore what’s going on it will go away. But by the time I do anything, I feel this crushing fatigue again and I end up on the couch. Or in bed.

Sleeping is a negatory. I try to sleep but it doesn’t work, and when I wake up in the morning I can hardly haul myself out of bed. I don’t feel rested or refreshed or like I even closed my eyes. I want to cry but I’m too fucking tired to cry.

I was supposed to go see my massage therapist on the 14th but our local snow canceled that appointment. I was also scheduled to go tomorrow morning, but I literally got an email at 9:30pm saying she’s sick and has to cancel. And for sure I’m grateful because I do NOT want to get sick and it sounds like she has the flu, but I’m so disappointed. For one thing, I was hoping some trigger point release would help with my imbalance and nausea (hoping, though not confident)…for another thing, getting onto her schedule is a bitch and even though I rushed I struggled to get back onto her calendar. It’ll be two weeks before I can get back in to see her, which might not be horrible because if she DOES have the flu I wouldn’t want to be back in her “hands” too soon. But it’s hard to miss appointment after appointment when I’m feeling so poorly. Hub tried to send me a link to a list of massage therapists in the area, but none of them do trigger point AND it’s hard to just find a new massage therapist. It’s like a mental therapist…you have a relationship built up. It’s not so easy to walk into someone’s space and get naked and let them rub you for an hour.

I see T on Friday, which is the day after the one year anniversary of my mother’s passing. Just happens to be how it worked out. Considering how things are going at the moment, it’s going to be a long, sobby appointment.

I can’t stand this constant nausea. Every time I swallow I feel sick. Every time I move I’m wobbly and off balance and that makes the nausea worse. If I didn’t have the dogs, I’d be in bed all day. I gave thought to going back to bed after lunch today because Butthead had peed and pooped after HER lunch so I knew she’d be okay for a while, but I didn’t want to give in. I’ve been in that place where I didn’t get out of bed for weeks (with my prilosec fever) and that’s a bad road to head down. It only makes me weaker and makes me feel worse.

Hub’s birthday dinner with his family is this coming weekend. I don’t know how I’m going to go…by 3pm, I’m so exhausted I can barely sit at our kitchen table for dinner, how am I going to get out and go to a restaurant and be “on” for his family? For hours… We didn’t go out on his birthday because I couldn’t get up the energy. We didn’t go donate the dolls and bears I crocheted to the police station because I didn’t have the energy to leave the house.

I don’t know what to do now. I don’t know what path to take. I don’t know how to do anything right now.

 

 

Don’t pigeon-hole me

I had a very very bad night last night. Even before I was ready to go to sleep, I was feeling uncomfortable. My hands and arms were tingling, or feeling like they were going to be tingling, and no amount of moving them or rubbing them or moving around made it better. Hub went off to sleep, with an early morning alarm to go to an on-site meeting that required a two hour commute (each way). I sat up for a while because my right elbow started hurting. Then my left inner arm starting hurting. The tingling was still going on in both hands. I was so unhappy. I couldn’t lie down and get comfortable, so I kept sitting up in the dark (I had turned the TV off by about midnight in the hopes that I could go to sleep). I was rubbing my hands and bending my elbow repeatedly.

And I did the worst thing I could do. I thought I remembered that pain in your elbow was a symptom of a heart attack, so I looked it up. And it was…and I knew immediately I’d made a mistake by confirming that, and I turned my phone off immediately. I tried again to go to sleep but now both arms were hurting, the elbow, all the tingling, and my body was getting weary from sitting up for so long. I hadn’t slept a wink.

At one-thirty a.m., I had a panic attack in my pitch black bedroom, with my husband snoring beside me. This panic attack in particular consisted of violent trembling of all my limbs. I knew what it was and I let it come because I had hoped it would tire me out and let me give in to sleep. Instead, all the symptoms I’d had before the attack were still there…and I still couldn’t get comfortable enough to sleep. So I sat up for another hour or so and ended up with a second panic attack. Same violent trembling and fear, with all my pain symptoms still hanging on afterward.

So I woke Hub up and told him I needed to call an ambulance, because I was feeling really poorly, I felt short of breath at that point, and all my other symptoms remained. While he got dressed and went to the bathroom, I pulled on some clothes and tried to get downstairs to wait for him. He called 911, requested the ambulance, then called my father so he could take care of our dogs. It was about three thirty in the morning.

I wish I could say the EMTs were kind and compassionate when they arrived, but they weren’t. The lead guy started asking me what was going on, and I told him. He immediately asked me if I had any history of anxiety…which I said I did, but that it was well-controlled most of the time. And that my symptoms had all come about prior to any feelings of anxiety. He told me to follow him to the ambulance–Hub helped me out through the garage while the EMT just walked off–and told me to get in through the side door (again, Hub helped me up the steep steps). Inside the ambulance, the EMT hooked me up to the blood pressure cuff and oxygen finger thingy, then started asking me questions again. He kept telling me that my tingling and pain could be from anxiety, and I kept telling him the tingling and pain were PRIOR to me feeling anxiety. My vitals were pretty high, so he directed me to work on my labored breathing while he filled out some chart and told me he and his partner didn’t usually work our local area. As my vitals came down a little, he announced that maybe I wanted to just go back in the house and let them go back to the station. “We’re not in the habit of kidnapping people and taking them to the hospital if they don’t want to go…”

I just stared at him. I was giving him information on “bilateral” arm pain, shortness of breath, tingling in both arms and hands…and he was telling me to go back to my house. I told him in no uncertain terms that I was very familiar with my anxiety and that this wasn’t anxiety…and that I wanted to go to the ER to find out what was going on. He kind of sighed and said, “okay, but you need to keep working on your breathing and anxiety so once the doctor sees you, they can evaluate you without the anxiety in the way.” Then during the ride to the ER, he asked me, “how many times have you done this? gone to the ER in the ambulance?” I said, “this is the first time.” All he said was, “Oh.”

WTF.

At the ER triage, he told the nurse FIRST that I had a history of anxiety. During his recitation of my history and presenting pain, he told her at least two more times that I had a “previous history of anxiety”. They took me to a room and told me to scoot from their gurney to the hospital room bed, then said, “the nurse will see you at some point.” and they left.

Hub FINALLY found me a few minutes later, without any assistance from any of the nurses or the EMTs, who were all standing around chatting at the nurses’ desk. We sat in the room and waited for about half an hour (or 45 minutes?) before the nurse and PA came in to see me at the same time. The PA started asking me questions about how I was feeling, then looked at the computer and said, “You have anxiety issues?” I said yes, but that this was not the anxiety, that I have been managing my anxiety extremely well for quite some time–the PA looked at Hub as if she was expecting him to argue with me, but he confirmed what I was saying. So the PA said, “why don’t you let us get you started on some fluids and some anxiety medication?” I said, “no, I don’t take medication for my anxiety. I manage it without medication.” The PA looked dumbfounded, and wanted to know what she was supposed to do. I told her that I was afraid the pain was symptomatic of a heart attack, and I wanted her to check to see if that’s what was going on…or if it was something else and WHAT the something else might be. The PA asked again about giving me anxiety meds, or something for the pain in my arms. I said I didn’t want pain meds (which she told me would be anxiety medication anyway), that I had anxiety medication at home but that I didn’t take it. Again, I got a look from the PA that said she was sure I had lost my mind.

At this point, the nurse stepped in and said, “oh, I do the same thing. I carry my klonipin with me all the time, but I haven’t used it in years.” The PA looked both confused and annoyed at that point.

The PA said, “I can do a whole work-up, but your history says you had an EKG in June with a stress test and that’s the GOLD STANDARD. So if it was clean, you really don’t need to do anything here.”

I told her I wanted to know what was going on, what the pain was and why was I feeling really poorly. So she said she’d order the EKG, bloodwork, heart enzymes, and a chest and neck xray to see if there was anything going on there. She left the room, and seriously? That was the last time I saw her. We were there for another two and a half hours and she never came back into the room. Neither did a doctor. The nurse took care of us, did the EKG and told Hub about thirty minutes later that an attending said it was normal. She did the blood draw and then told us about an hour later that the results were all clean. She took me to get the xray (because their orderly was MIA) and she was the one who came back to say the xray was fine and I could go home. In the time we were there, she was in and out of our room a lot, talking with us about her history of anxiety, and how people who had never dealt with it didn’t understand. That she knew what I was saying, and how I was feeling about the meds, and how she understood that I was identifying pain not associated with my anxiety.

I felt so demoralized by the EMTs, the PA, and the other staff there (not including the good nurse). I am very open and honest about my anxiety. I feel it’s important for medical personnel to know my history in full, which includes my anxiety. I’m so disappointed that doing so in this instance gave the EMTs and the PA the reasoning (in their minds) to shove me aside, to not take me seriously, and to abandon my care.

We were released from the hospital and got home around six forty-five in the morning. Hub had to bow out of his meetings, he retrieved the dogs from my father’s house, and we both went back to bed. I slept for about two hours, then dozed fitfully for a little while after that. When I woke up and went downstairs to have some lunch, I found that I still had all the same symptoms as the night before. The tingling comes and goes–and is in my legs and feet and sometimes in my face–my back is hurting, I’ve had a headache on and off. I don’t know what’s going on.

Hub reminded me today that fall is usually when I get a pretty bad flare of my myofascial pain syndrome. So is that what this is? The pain is in different places and the tingling is new. Of course I know that my MPS symptoms have changed over the 15 years I’ve had it, but this all feels different. I don’t know why I feel that way, but I do.

Even so, I have no idea what to do now except push through and try to keep my anxiety in check. I am scheduled to go in to see my massage therapist tomorrow to try to get some trigger point work in, with the hopes that it will relieve some of the pain if it is in fact related to my MPS.

The panic attacks don’t feel like a huge setback (a small one, yes), mostly because I knew what was going on and I actually welcomed them with the hopes that just going through it would give me relief on the other side. Almost like if I gave it permission to happen, then I was okay with it happening.

Now…I’m tired. I hope I will sleep. Hub is working from home tomorrow for most of the day, I have the massage therapist, then I’ll be alone for a bit while Hub is visiting a client. Well, the dogs will be with  me and my father is nearby, but I’ll have to take care of the dogs and feed them and stuff on my own. Hopefully I’ll feel up to it.

 

Who do I do for?

Maybe about a month ago, I said to my father, “What do you think about having the family over for a Memorial Day barbecue?” He agreed, and although I offered to host the dinner at my house, he said it was fine to have it at his house.

I made this suggestion for a couple of reasons.

1. My aunt and uncle (my mother’s brother and sister-in-law) have been trying to get us to come to gatherings at their house or their daughter’s house since my mother’s passing two months ago. In both cases, I declined, as I was not ready. My father went to the mother’s day gathering, and came back saying it was very difficult for him.
2. My brother has told me how he wants “the family to stay together” and that he doesn’t want to give up “family get-togethers” even though Mom is gone. (I have so much more to say about this but…enh)
3. I don’t want my aunt and uncle to become disconnected from my father and/or from the rest of my siblings and me.
4. I wanted my father to have something to look forward to

I figured this would be very low key, so I didn’t make a big thing of it. I invited my aunt and uncle, my cousins, a friend of my mother’s, and my local siblings. I told people to bring any kind of side dish that they liked to eat, but that we would provide the grilled meats. I didn’t think about anything until I needed to buy the food a few days before, and even then I kept pushing it out of my head.

I thought Memorial Day would be easier because we don’t associate the “holiday” with my mother. In past years, if we ever did anything for Memorial Day, it was an impromptu cook-out at my house mostly because Hub wanted to grill anyway and sometimes my parents and brother would join us. I thought this would make everything easier.

When I went over on Sunday to bring some food ahead of time to my father’s house, I asked him if he wanted help setting up in the dining room, which is where we normally host more than the immediate family. But he wanted to have everyone in the kitchen. We went through a bit of work to make that fit, but he seemed to want to stay away from the formal dining room where we usually have gatherings. I understand, so I didn’t discuss it with him, we just did what we needed to for the kitchen.

There was a snafu with the grill, but we managed to get food grilled and put out on the island for people to serve themselves and then sit at the table together. I felt very disconnected from everyone. I spent most of the two hours disengaged and quiet. No one seemed inclined to hang around after eating.

My aunt–the one who can’t seem to get past her own grief for her mother–put her hand on my shoulder on the way out and said, “It’s a good first step, right?” I wanted to punch her in the throat. Instead I said, “thanks” and turned away.

We cleaned up, then everyone pretty much left. When I thought my father was okay, Hub and I went home. I was a bit annoyed at the “side dishes” that people brought (someone brought a little package of pre-cut fruit, someone else brought a little bowl of cut veggies, and someone brought a bowl of cole slaw), but I really just wanted the evening to be over.

I didn’t want to have this get-together. I didn’t want to be the one arranging it. I didn’t want to be there. I hated the whole thing. I didn’t do any of it for me. If it had been my preference, I would have not had any get together. I’m not ready. I’m not interested. It hurts too much.

My brother, the one who has said how upset he is that the family isn’t getting together? He’s the one who hardly ever spent time with my parents. He’s the one who doesn’t stop by and visit, or instigate any get-togethers. He never hosts anything at his house. He never arranges any family get-togethers. He never even calls to say “we’re heading out to dinner, want to join us?” He says he is going to invite our father out to eat to stay in touch with him, but he hasn’t done it. My brother’s wife saw our mother maybe once in the last difficult two months of her life. She just didn’t care. My brother suffers from major depression. He is being treated for major depression. I want to do what I can to help him. I don’t know how he is helping himself in this arena of staying in touch with the family. I think he is relying on me to do it, and I don’t want to do it. If he wants the family to continue to get together, he’s going to have to participate. Because I’m not going to step into my mother’s shoes and take over. It isn’t me. And I don’t want the things he wants. If he wants those things, he’s going to have to do them.

My father…I don’t know what he wants. I don’t think he ever HAD to do anything with regards to family gatherings, so he just doesn’t do it. If I don’t do it, will the family slow fall away from each other? My father doesn’t want to do anything. He never had to pay bills–my mother did that–so he has no clue what money he has or doesn’t have. He doesn’t know about his the house or car insurance. He doesn’t want to know. My brother–the one who lives with him–is basically doing all the bills. And the grocery shopping. And the cooking.

I basically just spent the last ten minutes sobbing. I’ve cried myself to sleep the last two nights. Today I just feel overwhelmed and completely overemotional and this isn’t even the first time I’ve cried today. Apparently not the last, either. As soon as I catch my breath, I just start again.

I miss my mother so much I can’t even… I just can’t even. Period.

I’m in pain. My body hurts. I saw my massage therapist but it didn’t help and she’s going on maternity leave so I won’t see her for months. I’m not sleeping. The acupuncture isn’t helping. My health anxiety is suffocating me. I haven’t been able to write anything (my books or anything other than the blogs) for years. Since before my mother got sick. I can’t figure out the paperwork for my mother’s bonds.

I feel like … nothing. I don’t want to engage with anyone. I don’t want to do anything. I don’t have the energy to be the person everyone else seems to need me to be. Not right now. Not today.

 

 

 

Kristen Bell talks about depression

Another worthwhile (though short) article about a celebrity who has dealt with depression. I appreciate her candor and agree with what she’s said. I just wish she had shared a little more about her personal journey.

http://motto.time.com/4352130/kristen-bell-frozen-depression-anxiety/

 

The men-all-pause

I was really concerned about my surgical menopause, after having my ovaries removed in the second surgery. Everyone talks about hot flashes and night sweats (which are apparently hot flashes but at night) and moodiness. Among other things, of course, but those are top issues that women report. I wasn’t sure how soon I’d be feeling the effects of the surgical menopause, as anecdotal reports varied, depending on the individual. I figured mine would be slightly delayed, because of my weight–fat around your waist especially is full of estrogen, and that would likely keep me from falling into the surgical menopause immediately. But even women who are overweight often have menopause symptoms immediately after surgery, so you just never know.

I had one hot flash (so far), I think. I’m not sure if it was because I was getting a fever from an infection, but it felt like what I’ve heard a hot flash feels like. But beyond that, I haven’t had hot flashes, per se. I just…get hot. And then I get cold. And then I got hot again. Especially at night, I go through this cycle of having the ceiling fan on and an oscillating tower fan right next to the bed, and I start with my sheet and comforter on top of me. Then I get hot, so I throw off the comforter, then I throw off the sheet. Then I get cold, so I pull the sheet over me, but that’s not enough because the oscillating fan is blowing RIGHT ON ME, so I have to pull the comforter over me to get rid of the chills. But then I got hot, so I get rid of the comforter, but I’m too hot for the sheet, so I throw that off again. Then I’m cold, because FAN BLOWING ON ME, so I yank the sheet over me again, and then the comforter. And then I repeat this cycle. At some point, I know I fall asleep, though I don’t think there’s been a pattern of whether I have the sheet and/or comforter on or off me. I just know that repeatedly through the night I wake up and go through the cycle of hot cold hot cold sheet comforter sheet comforter hot cold hot cold. And no matter how many times I wake up and go through the cycle, it keeps me awake for about an hour as I cycle through the hot cold sheet comforter routine. I don’t really SWEAT like a lot of women talk about (sweating through their night clothing and/or sheets), my internal thermostat is just messed up. But really, I don’t sweat too much anymore unless it’s really humid out and I’m working my ass off at something, then it’s like face sweat and, well, boob sweat, but not all over sweat. So maybe I just don’t sweat enough to have night sweats. Either way, this hot cold cycle is annoying and unfortunately affects my sleep, but it’s manageable. Because I don’t sleep well most of the time anyway, so this is nothing new.

I thought for a while I was having dry mouth from the SM, but that went away about a week after my last round of antibiotics (from the incision infection). I am having some headaches, which could be the SM or it could be allergies. I’m pretty new to these spring and summer allergies, so I’m still trying to figure out what is an allergy symptom and what isn’t. My hair isn’t falling out, yet, and I’ve had no moodiness. None, zip, zero, nada, zilch. I thought that would be a big thing for me, because I do trend to moodiness, but nope. No crying jags, no anger, no swing from happy to sad. I’ve been pretty okay–moderate–and I keep wondering when it’s going to hit me. More than the hot flashes, even, I thought it was going to be moodiness. I warned Hub, and apologized before I even went into surgery. My fingernails, though, are bad. I’ve always had issues with my fingernails, but over the last ten years or so, they’ve been pretty good. They would grow fast, and if I kept them trimmed to a certain length, they weren’t too prone to breaking. And they grew at a pretty good pace. Now they’re breaking all over the place, and not growing back very quickly.

What is most distressing for me at this point is the fact that I’m losing words. Or not being able to find the words I want. Hub has found himself jumping in to try to finish sentences for me when I stop to try to find the words I want. The words that might be just out of reach, or totally out of reach. I find myself pausing a lot, searching for words when I speak, searching for words when I’m writing something (an email, a blog post…doesn’t seem to matter). I feel like something is wrong with me. I mentioned it to Hub who suggested it might be the hormone shifts, and I think I read that somewhere, but I’m not 100% certain. Whatever it is, and I hope it’s SM, it’s scary and frustrating and distressing. I’ve always been someone who thinks thoroughly before I speak, but I’ve never had this much loss for words.

I have had much more muscle pain, which can also be a SM symptom. I saw the massage therapist last week and she beat the hell out of me. I was actually hurting for three or four days before it started to recede. But again, I do have myofascial pain syndrome, which is a muscle disorder, so it could be that I’m in a flare because of all the hormonal changes (and the physical stresses I’ve been under because of the surgeries and because of the care I’ve had to give to Butthead after HER surgery). It’s so hard to tell what is SM and what might be something else.

I’m having lots of dreams and nightmares…much more than before. Prior, the dreams would generally happen in the morning, after Hub got up but before I would get out of bed. Now they’re happening all night, and when I wake up and go back to sleep, I fall back into the dream/nightmare again. They’re vivid and uncomfortable dreams, and they generally leave me feel unhappy and distressed.

Oh, and the hormonal acne shit is driving me a bit batty. I thought with the lack of hormones, the monthly acne would go away. Nope, instead it has gotten worse. It’s all along my jawline, my chin, along the sides of my nose and nostrils, and around my mouth. Prior to the surgery, I would have one or two pimples per month, but now I’ll have several at a time. It’s frustrating because I don’t know what to do for it. Before I would wait it out because, well, hormones. Now, if I don’t really have hormones, when will the damn things go away? Bleh.

It’s still possible for other symptoms to crop up at any point. I have my fingers crossed that nothing gets worse and everything gets better, but I’ll do my best to cope no matter what comes.

 

Picture this…

Oh yes, well, um, sorry, but no can do.

Ask me to picture something in my mind and my creative brain will give the a description of the “picture” to the smallest detail you require, but I cannot actually picture what was described. I can’t bring up an image if I close my eyes. I do not see a photo, a television or movie screen, art on a canvas, my husband’s face, my beloved deceased Sweet Pea…

Ask me to describe any of those things and I can (and will). Ask me where something is in my house and I can tell you, down to what close, what shelf, which side of the shelf, behind what other object. I can…but I can’t bring up an image of that item. I’m broken that way, and I don’t know why.

The reason behind this weird rant is that I get to fly (woo hoo–not) in September to my niece’s wedding. I haven’t flown in more than 25 years. Prior to that, I flew several times…mostly on full size airplanes, but twice in a small six-seater plan (flown by my aunt and uncle). Not one of the flights I’ve been on has been uneventful. I’ve had really bad take-offs, really bad turbulence, really bad landings. One flight had turbulence the entire flight. Another flight, we were landing in a storm and the 747 we were on–full size plane–actually tipped sideways as we were descending to the runway. The flight with my aunt and uncle, the landing was so windy that not only did the plane sway violently as we tried to descend, but my two younger cousins who were sitting across from us, facing us, were throwing up as we tried to land. And they flew almost every weekend with their parents (my aunt and uncle–the pilots).

I don’t like to fly. I’m not a good flyer. I will pretty much drive almost anywhere rather than fly. But driving to my niece’s wedding did not seem to be prudent, in that the drive would be 12-14 hours long, for a four hour wedding. And the wedding is on a Sunday afternoon, so getting home would take us into the work week, which was going to be a problem for Hub. In addition, if I drove, my parents were going to want to drive with us…and my father is not a good driver anymore. It’s sad to say, but true. He has some physical issues that wouldn’t be good on a 12 hour trip, and he’s not one to let others drive even though we’re all perfectly able. Plus, his reaction time isn’t so good anymore. And no matter how I tried to work it, I couldn’t talk my way out of attending the wedding (I’m not particularly close to my niece as my brother and his family have lived that distance away from us for most of her growing up years and they rarely visit).

So to that end, we have to fly to the wedding. Hub and I are flying into the destination Sunday morning and flying home Sunday night. We’ve made this decision because of Butthead, who had her crutiate ligament surgery less than four weeks ago. She’ll still be in “recovery” when we need to be at the wedding, so we don’t want to leave her for too long. We’re fortunate that a very good friend of mine is going to come stay with the dogs while we’re gone for the day…and I trust her with our dogs. Before we go and after we get back, we’ll be watching my parents’ dog, too. But she can’t be with Butthead in a normal fashion because Butthead can’t play yet (see crutiate ligament recovery), so we have to restrict their together time and it has to be very supervised.

I was trying to find ways to make flying an easier experience for me. Initially, T suggested hypnotherapy, and I tried to get appointments with local hypnotherapists, but one was booked for a year (a YEAR), and the other could only fit me in with two appointments before the flight, one of which was barely three days before the flight, so I cancelled those. I tried a third hypnotherapist, but she was traveling in August and September and wouldn’t be able to fit me in before the flight. I was hoping to try other options, one of which was a guided meditation someone made for me to reduce my flying anxiety. Although it was a nice meditation, it included bringing up a picture of a plane in my mind and replacing it with a picture of something nice. But I realized at that point, I wasn’t able to bring up either image.

So I turned to youtube hoping to find some videos on hypnotherapy and/or relaxation techniques for flying. But once again, they were all trying to get me to PICTURE things in mind. Picture things to relax, picture things to move into a hypnotic state. I can’t do those things, and I was stressing out so much over it that I was in tears. Hub told me there must be another way to relax or move into a hypnotic state without picturing things, but I couldn’t find anything. Everyone wants you to picture good things, or picture a staircase, or picture your loved one…a beautiful meadow, a waterfall… and I can’t. It’s so frustrating it really pushed me over it tears. It’s the first time I’ve cried since my second surgery. And it wasn’t hormonal, it was just pure frustration and distress. And it sucks.

I don’t know what’s going to happen. I hope I’m going to be able to get through the flight(s) easily. I’m not thinking about the anxiety of the flight, I’m more thinking about how annoying the trip is going to be. I’ve never been through today’s security measures at an airport (again, haven’t flown since 1989) or had to think about getting patted down or going through an xray machine. Or the size of our carry-on bags. Or how big and busy the airports will be, or the parking… I’m bringing my crochet and a book, and my iPod. I hope I’ll be able to distract myself enough to not be miserable the whole flight.

 

Don’t pity me

I’m doing that just fine all on my own. Bleh.

Seriously, this is the first day I’ve been able to concentrate even a little bit. Prior, I was feeling very foggy and dizzy, and like my eyes wouldn’t focus. It was pretty horrible. Thursday I was trying to be a good girl and eat protein, so we had some deli turkey in the house in preparation. Turns out there’s something on there in the gluten range (maybe the seasoning? we don’t think we’ve bought this meat before, it was fresh-made at the store) that was affecting me and I spent most of Thursday suffering from hot-face, which made me miserable. It wasn’t until after I’d had some for dinner that I realized it was probably the turkey and I had to just wait it out. I didn’t start feeling that going away until sometime Friday mid-morning. Meanwhile, my sleep has been close to nil. That has been kind of horrible because it aggravates anxiety big-time, as all us anxiety sufferers know. My PVCs remain annoying…

I’m in some mild pain, but taking ibuprofen twice a day, just to help speed healing, I hope. Friday the doctor’s office called to check on me and the nurses warned me to be very aware of blood clot symptoms, especially with the weekend coming. She told me to not wait and go to the ER if I felt I had symptoms. So now I’m spending the majority of my time worrying about a blood clot. Fan-fucking-tastic. And apparently this is an issue for MONTHS after a surgery. So my leg is bothering me and it’s kind of freaking me out, but I am trying to remind myself that it’s probably a muscle ache and maybe must my knee hurting (which is normal for me). I’m afraid…there’s so much going on in my body, I have no idea how to identify what is normal and what is not. My heartburn is pretty bad (with accompany nausea!…yay), even though I’ve gone back on my regular digestive enzymes and probiotics…they haven’t really taken over yet. So that means I’ve got pain in my chest which radiates to my arms and back. And I have to decipher that as being different from being short of breath and in pain which could be a clot my lung (versus in the leg, of course). This has not been a good experience for me…I’m sure T is thinking “Ooooh, exposure therapy” but I’m thinking OMG how am I going to get through this?

I feel very split up about all this…trying to realize I had major surgery and still feeling like I’m supposed to be active to help heal. They’re all telling me to listen to my body, but my body LIES to me. So how am I supposed to know how much to rest and how much to do? I had major surgery and yet they sent me home five hours after. Which is it? Major surgery and rest, or get up and move? I’m FINALLY able to stand up and sit down without groaning from the pain and stretch, but it’s still uncomfortable.

Eating is difficult because of the nausea and the heartburn. I have no appetite, but I know without food I won’t gain stamina or energy. I’m trying to drink but I’m NEVER a good drinker so I’m sucking with that, too. Which apparently could lead to more potential blood clot issues. So much fear in my body at the moment. I told T when I had my phone appointment on Friday (which I could only talk for half an hour, I was so out of it) that I feel like I’m in the midst of anxiety even though I didn’t feel ANXIOUS. She said it’s my body responding to the trauma of the surgery…and to just try to use my tools even though it’s not really “anxiety”.

My head feels full and pressured. I have a headache (while I’m taking 800mg of ibuprofen…wtf is up with that?) and I’m so tired all the time. I want to be past all this NOW.

On top of all that, Hub has a really bad cold that came on Tuesday night. I’m SO lucky that I haven’t gotten sick yet, even though he’s feeding me and getting me drinks. It’s really really sucky, though, because he’s not touching me. No hugging, no kisses, no rubbing my back or my hands or my arms. No comfort. It’s a really big loss for me… I want so much to be soothed and because we’re trying to keep me from getting the cold, I feel bereft and alone.

Like I said, I’m doing a find job of pitying myself. And now the eye floaters are back, so I’m done here.