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Shock and OW!

I know that I said previously that I wouldn’t be seeing the neurologist for my EMG until September, but that changed.

I had such a terrible weekend. Saturday I basically did nothing because I felt so weak and tired. We went to bed at our regular time that evening, but at 12:30am Sunday morning, Hub and I were awakened by SCREAMING smoke alarms. In our house, all our smoke alarms are interconnected, so if one of them detects something every single alarm goes off. Not only does it make that horrendous alarm noise, but it also yells “FIRE! FIRE! FIRE!” I literally sat straight up in bed and hit Hub in the chest to wake him, then I turned the overhead light on. The dogs were freaking out, I was trying to get dressed, and Hub was trying to unhook himself from his CPAP machine, all while the alarms are screaming and yelling, and the dogs are running around the bedroom (we keep them closed in with us at night). We finally are semi-dressed and have shoes on and we open the door to the hallway and the screaming gets louder because there are more alarms in the hallway and in each of the bedrooms. I tried to get the dogs downstairs to give them treats (they always get treats when there are loud noises) while Hub tried to silence the smoke alarms (the dogs are still freaking out and Butthead races into her crate and won’t come out even though there’s an alarm nearly over her head still screaming). We don’t see or smell fire anyway, but Hub goes to investigate the whole house while I retrieve Butthead and rush the dogs outside and away from the noise. When Hub comes outside he tells me he has ripped down several of the detectors and the noise has stopped. I’m not happy, I’m afraid that there’s a fire in the attic or in the walls or there’s CO2 somewhere and that’s why the alarms went off. So at about 12:45, I find and call the non-emergency number for the fire department, and I explain what is going on. They take my address and say they’ll be out to the house shortly…and while we’re waiting the alarms go off again, so Hub rips MORE detectors off the ceiling and when the silence reigns again he takes the dogs into the basement so they can’t get out of the house and I go outside to wait for the fire department. To try to shorten this story–which really has nothing to do with this post–the firefighters come out to the house in the middle of the night, and after inspecting the entire house, they figure out that ONE of the smoke detectors has malfunctioned. And because it was wired into the “system”, it sets off all the other detectors in the house. Bless them, the firefighters were pretty awesome, and by 1:30am, they were walking back down our driveway in the darkness to load back up onto the firetruck they had left in the street. We were awake, trying to re-settle the dogs and ourselves, until about 2am.

Okay, so Sunday night I pretty much had a bad breakdown. I was just sobbing over how bad I was feeling and how tired I was and how afraid I was. I felt like I was getting worse, that my weakness was worse, my fatigue was worse, my imbalance was worse, and that now I was having trouble with my hands/arms and not just my legs.

For only the second time in the four and a half years I’ve been seeing T, I actually contacted her to seek guidance and help after-hours (or out of a normal session). The only other time I’ve done that is when my mother died. I am so grateful and so lucky that she took the time to talk to me in email (which is how I contacted her). I can’t say anything got resolved or that I even felt “better” in that moment, but knowing someone was out there to reach for–and who would reach back–was enormously helpful. Yes, Hub was here and he was being supportive, but this time it took a more confident and experienced communication.

When I finally caught my breath, I was so exhausted from struggling during the day and crying for hours that I went to sleep at 9pm. When I woke up the next morning, I called to see if my primary doc could see me, even though I didn’t think it would be helpful. They were able to fit me in just before lunchtime, and Hub took time off of work to go with me. After that phone call, I called the neuro’s office to see if he had any cancellations where he could fit me in for my test. The receptionist said no right away, because she had just gotten off the phone with someone else asking the same thing. So I asked to leave a message for my doctor, and I told him I was feeling worse and that I was having trouble with my hand/arm. He called within thirty minutes and fit me in for the EMG for two days later (that’d be today).

I went to my primary, who said she didn’t know what else to do for me except to send me to see a sleep doctor to see if I was having some kind of sleep disorder, and also to an infectious disease doctor to talk about Chronic Fatigue Syndrome. We were sitting in her office and I was so damn tired and frustrated that I literally put my head down on the edge of her desk and tried not to cry. She asked me what was going on and I told her, I was exhausted, frustrated, and scared. She immediately asked me if I was depressed. I was both annoyed and frustrated with this, because ANYONE in my shoes, with this length of exhaustion and weakness, and not knowing what was wrong, would be afraid and sad and upset. I thanked her for the offer but said I wasn’t ready to do that right now. She told me to try to stop focusing on my symptoms because I would surely make them worse by doing so, and to continue with my neuro appointment.

After that, we ran off to get my blood work done for the neuro and then we went home. Fast forward (cuz this is soooooo long), I spent most of today trying not to think about the test and/or what it might or might not say. I semi-obsessively check my laptop to see if my blood work has come in while trying not to spend time searching Dr. Google. We finally head off to the neuro office and within about ten minutes we are back in the testing room. I had read a little about the test(s) and heard both that it was no big deal and that it hurt like a mo’fo. I think I ended up somewhere in the middle.

The neuro doctor is very quiet in general, so there was almost no talking. The room had to be like 85 degrees, which I assume was on purpose because some of the testing is on muscles and maybe the heat keeps them relaxed? The first part of the test was where they put some thingys on you and then send an electric shock through certain nerves. The second part they use needles, stuck into your muscle, to record some kind of feedback. I asked what the needles were like and was told they are thinner and shorter than acupuncture needles. When he started zapping me with electricity, I asked if the needles hurt more or less, and he said “there’s no electricity with the needles” and went back to his zapping. So after another few minutes of silence and him randomly saying “zap here”, I ask him if his patients say the electricity is worse or the needles, and he says “it goes both ways.” *sigh*

The zaps range from a slight sting to a full-on-stick-your-fingers-in-an-outlet zap to OH SHIT THAT HURT LIKE A MO’FO. Fortunately, they are pretty quick zaps–up and down both legs in multiple places and along one arm and hand–and within about forty minutes we are moving on to the needle part of the test. He actually started with my arm and it really wasn’t all that bad, as long as I didn’t look at what he was doing. When he moved to my first leg, it was fine until he went into the inside of my calf and then it HURT. Especially he had trouble finding the right spot to be in and he had to sort of shift it around and push harder and that was pretty bad. The same issue happened with the other leg, but then we were pretty much done. After I got dressed, I asked him if he saw anything and he only said, “nothing jumped out at me” and said he’d have to go through all the data that had been collected during the test in the computer. I asked if there was anything I should or shouldn’t be doing, and he only said to stay hydrated and to rest. He scheduled us to come back for a follow-up for next Wednesday, so I have a week to sit and wait…

Tomorrow morning I go in for my CT Scan for my cancer follow-up. My father is driving me because Hub has to be in the office and I feel so weak and off-balance that I am afraid to drive myself. Friday I have a massage therapy appointment, which I hope I can get to, and I might have to have my father drive me again. I had cancelled my PT appointment for this past Monday because I didn’t think I’d be able to do it. I hope I can return to it this coming Monday, because I need to continue to try to make progress on my shoulder.

For now, I have a headache and I think I need to go to sleep. I have to get up early to start drinking the crap for my CT Scan, so off I go.

 

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Exclude me?

My last appointment with T, I was telling her how horrible I’ve been feeling physically again. Among the conversation–other than grief and emotional issues–she mentioned that she had gone onto an exclusion type of diet. She’s been having some gastro issues, along with her fibro and post-shingles issue. I don’t know how SHE got onto the idea of doing a food change, but she mentioned to me that she was doing it and how well it was working for her.

I have already eliminated gluten due to a wheat allergy. In the past three months or so, I have cut out a majority of dairy in the form of cheese (I could never have imagined!), though I have not been entirely strict about it. Mostly I cut cheese out because I felt like I was eating it daily because I was accustomed to eating it and not so much because I was enjoying it. So I have changed to eating cheese when I want it–which isn’t as much as I had thought–and similarly with other dairy items. Again, I didn’t cut it all out, I just cut back a lot. Maybe 70% less than before.

The exclusion diet that T had been trying was something called the Whole30. I’ve been reading about it and learning the rules, and Hub and I have decided to give it a try. What makes it less…stressful, is that they suggest you do this for 30 days and then start re-introducing “non-compliant” foods one at a time to see what kind of reactions you have. When I say “reactions” this time, I mean physical and emotional reactions, as well as digestive/allergic reactions. Apparently Whole30 excludes all grains (including corn), legumes, dairy, certain oils, and added sugars (no matter if it’s real or fake sugars). They also urge people to eat as clean as possible, with organic (and hormone-free, and non-gmo, and humanely raised) meats, fruits, and veggies. Of course that can be difficult for a lot of people, both in terms of access and budget, so they suggest you do the best you can within your circumstances.

Generally speaking, Hub and I eat pretty balanced meals at dinner. We cook a lot, mostly because of my wheat issues and Hub’s diabetes. What will be more difficult is breakfast (which I don’t eat and I have a tolerance issue with eggs, which mostly is what they recommend for breakfast) and lunch. I don’t eat or like breakfast foods, so I am concerned about how to handle that. I eat split pea soup with mushrooms every day for lunch, with little variation. It keeps my bowels working well and it also means I don’t have to THINK about what to eat every day. On the Whole30, no legumes means no split peas. Hub eats a lot of dairy and lots of bread (and grains) and cereal, especially for breakfast. He eats lunch out when he’s at the office more than he takes food from home, which means more adjustments for him.

Although I’m worried about what I’m going to eat, I feel like it’s going to be easier for me in most instances than for Hub. I don’t eat out nearly as much as he does (mostly once a week so we can spend time with my father), I don’t eat hardly any bread–and can give up the stuff I eat without any problem–and I don’t eat cereal. I can more easily adjust to eating no added sugar because I don’t add sugar to anything except tea, which I rarely drink. (And when I say no added sugar, I mean NO SUGAR in any ingredient in any form in any item with the exception of naturally occurring sugar in whole foods.) And I think I can adapt my “first meal” of the day more easily than Hub, because I’ll just eat leftovers from one of our dinners. Also, I don’t get bored with food to the point that I won’t EAT the leftover food. I’ll just eat it because it’s easy, but Hub will turn his nose up at it if he’s “bored”.

We’ve already started a menu for the first week, at least for dinner and for Hub’s lunches. I’ll probably eat more salad than I have in recent months, because I’ll put leftover proteins on a salad and eat it that way with homemade oil and balsamic dressing, or homemade mayonnaise (or I’ve found “compliant” avocado mayo).

The Whole30 says no snacking because if you’re hungry in between meals then you’re not eating the right amount of proteins and fats with your meals. Lots of people in videos basically said they snacked on veggies or protein snacks when they thought they were hangry in between meals. Again, the idea of the Whole30 is supposed to be “resetting” your mindset when it comes to what you’re eating and why you’re eating it. Some people do the Whole30 because they have a kind of addiction to food, or an unhealthy relationship with food (hello! right here!), while others use it to figure out what might be bothering them physically or emotionally.

T told me she had tons more energy, stopped using antacids, her fibro pain was reduced, and her post-shingles pain was reduced. A lot of people I’ve seen on youtube or read on blogs have had similar responses, with reduced pain, reduced inflammation, and better gastro symptoms, better sleep, better energy while on the Whole30.

It’s going to take a lot of planning and forethought for us, which is difficult because a lot of evenings we’re kind of like scrambling for dinner…and we never have lunches or breakfasts pre-planned. We’ve never planned out meals for the week on a Sunday, or cooked lots of meals in advance… We’ll see how it goes. We’ve been talking a lot about it for the last two weeks (we wanted to wait until after the wedding to start, because eating out is nearly impossible to do on the Whole30 plan), and hope that we’re doing enough planning to make it through the month. I really want to try because if there’s some kind of foods that are bothering me and causing me this hideous fatigue, I want to know. If it isn’t rooted in food, then I can move on from that.

I do see an allergist in the middle of August, so I hope to eliminate that possibility as well. The neuro test isn’t until the first week of September, so that’s kind of a long wait for me, which sucks. Until then I have to just keep pressing on, and rest when I can’t do anything else. *sigh*

 

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He’s leaving on a jet plane

Fortunately, I know when he’ll be back again.

But right now, that doesn’t really help. Tomorrow morning we’ll be driving Hub to the airport at 4am so he can catch a 6am flight to California for his sister’s wedding. And then I’ll come home and it’ll be me here with the dogs.

I had my appointment with T today and we talked all about this. I’ve got my plans made for the four days and four nights he’ll be gone, which include A LOT OF BOOKS from the library and a massage scheduled for Tuesday. Plus, I figure I’ll be renting lots of movies either from amazon prime or our on-demand cable television. And if things get bad enough, I’ll go spend time at my father’s house with the dogs. Not sure I want to sleep there because taking the dogs and all their paraphernalia will be a pain in the ass. Additionally, T reminded me to text her if I need to talk to her. I suspect I’ll be reading a lot of books to waste the time, both day and night, and napping on and off during all hours. Mostly I’ll be scheduling myself around dogs’ schedules for food and trips outside…and then trying to nap when they are sleeping.

Also, to prepare, we bought a security camera floodlight thing, that alerts me if there’s movement outside the door…and I can open the app and see live video of what’s going on (and it records the video if I miss the alert). It also turns on the floodlights with movement at night, along with low-light live (and recorded) video. So, at least I have that extra bit of security for myself.

Part of what I talked to T about is the fact that I don’t really know how to be without Hub anymore. I know how to be alone when he’s here (or at work), but I don’t know how to be alone when he’s not HERE. I’ve known him for longer than I’ve NOT known him. It’s been years since we’ve had any major separation (4 since his parents’ accident where he was gone for 3 days unexpectedly, but closer to 8 years for anything longer than those couple of days), and at that point I had my parents helping me while I stayed at their house…and we had Sweet Pea, who was easy as pie to take care of. Now I have this big house and I have Butthead, who requires a lot of energy and close watch. And I don’t have my mom nearby to hang out with when I get lonely, sad, or scared.

Another part of my concern is that Hub has health issues. He has diabetes (with minor leg and feet circulation problems), high blood pressures, and has a history of supra-ventricular tachycardia. I mostly am worried about him getting a blood clot in his leg from the traveling in the airplane…and even worse I’m worried that he won’t realize there’s something wrong. Or he’ll think whatever it is that is wrong isn’t a big deal and he’ll ignore it and not get to a doctor. Or that he’ll ignore it and get on the plane to come home and make it worse. The possible thought of losing him–especially considering how hard it’s been to lose my mother–is really overwhelming. I’ve been trying really hard NOT to impose my fears on him. The only thing I suggested is that he try to keep moving his feet and legs around on the plane just because of his circulation issues…and that’s all I said.

The probability of him having any kind of major problem is pretty low. The probability of me having any kind of major problem is pretty low. I have to just keep reminding myself that we’ll get through this. A week from now it will be over and we’ll be back to normal programming.

Until then, I am trying not to judge how I am handling things. I’m going to do my best to do my best, and then whatever happens happens.

(day one post)

 

 

 

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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.

 

 

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Sleep? Why bother…

Apparently this is what my body and brain has decided. Sleep unnecessary.

I know that for real it has to do with my mental, emotional, and physical pain. All of those wrapped into one, split into pieces, kneaded into each other, and then rolled into a throbbing ball of oneness. I’m so on edge that one small scrape and I’m raw and bleeding profusely, figuratively.

I cried on the way to the grocery store this morning. Not because I had to go to the grocery store, not because I was worried about being able to afford the trip to the grocery store, not because I was afraid I was going to have an anxiety attack in the grocery store… I cried because I couldn’t not cry. I’m tired, I’m not sleeping, I’m worried about Hub and I’m worried about Butthead. I’m worried about myself, too. My grief is overwhelming every part of my life and I can’t seem to dig my way out of it.

Hub is agonizing over a job offer–in part because it might mean less flexibility and he worries that he won’t be able to come home if I need him–that he received on Friday. I’m worried for him because I don’t feel that the company was being up front with him…they kind of bait and switched the job position (which they apparently did to the guy before him, someone Hub knows). I am concerned he won’t have any backup on his work, and I’m worried because if this is how they treat potential employees, how do they treat current employees. But Hub is unhappy in his current job and looking for a way out. Our health insurance changed due to the buy-out, so he’s both unhappy with the new corporate owners and unhappy with their shitty health insurance. Unfortunately, the potentially new company has equally shitty health insurance…so that kind of cancels out the pro/con in that category. Now they’re not budging on a concession he asked about (a minor concession on their part!), so that might be the end of that. I only hope that his current corporate overlords don’t decide that he’s no longer needed before he finds something else.

Butthead is randomly puking again. I mean, it’s good news that she’s not persistently puking like the last episode where we ended up rushing her to the vet hospital and coming home with anti-vomit pills… But this randomly throwing up (twice in the last four days…one of which was this morning which was another reason why I was so upset) is so frustrating. We don’t know if she’s sneaking and eating bad things outside or has gastritis and so her stomach hurts her or what… We’re at the point where we’re acclimating her to a basket muzzle that she’ll have to wear anytime she’s outside so she doesn’t eat crap off the ground and make herself sick. It’s hard and sad to make her wear a muzzle because she’s a good dog, not aggressive, shouldn’t have to wear it. I know it’s uncomfortable and bulky and just plain weird for her, but we don’t know what else to do with her. We can’t figure out what is wrong with her. And if it’s that she’s eating stuff outside that’s making her sick, there’s nothing else we can do other than the muzzle. For the past month or so we’ve been out there with her every minute, following her and standing over her and making sure she’s not eating things. But with the snow and ice, and my physical capabilities being limited at this point…I couldn’t keep up with her and I think she might have eaten something that made her vomit last Thursday when I wasn’t standing over her. We just don’t know what to do with her… So I’m worried that she’s going to vomit again like the last episode. Ugh. So far it’s been these two random episodes and today I spent time on and off modifying the basket muzzle to try to use a quick-snap collar to hold it on her head versus the old-fashioned buckle which is a pain in the ass to get on and off of her, especially with her floppy ears and long hair.

Even though I’ve been feeling ultra shitty and exhausted, we had to do a bunch of things this weekend. Most of which we accomplished. Unfortunately, one of the things was cleaning up the caulk in our master shower which seemed to be growing mold behind the caulk at the joints of the floor and wall. Hub is not flexible, so he had trouble sitting on the floor and scraping at the caulk, so I did 90% of it. Which, of course, hurt my arms, shoulders, and hands more than they were already hurting. The end result, though, is that we need to call in a professional to look at our shower because this is the second time in a year that we’ve ended up with this problem. Last time my brother helped me strip and re-caulk the shower, but now we’re in the same place again… There’s something wrong if there’s mold and mildew growing behind the caulk, especially since we bought mold-resistant caulk. This all means that we don’t have a shower in our bathroom and we have to haul ass to the shower on the opposite end of the house…past all the windows in the front of the house and over the foyer area of the house. It also means we have to haul all our paraphernalia into the other shower, which is smaller than our master shower. It’s not a huge deal, it’s just more stress. And more stress in having to find someone who knows what they are doing to come into the house to fix whatever is happening. The stupid sub-contractor that our builder hired to do our bathrooms did not know what they were doing. They screwed several things up in our master bathroom and ruined a lot of our shower floor tiles by having to go back and chip out all the wrong grout they put in. So we were left with grout over top of grout, and chipped tiles. And the slope of the floor is really bad, which causes water to pool in different spots in the shower and leaves our grout with water stains where the water sits. It’s shitty and depressing and frustrating. That’s all in addition to whatever this caulk situation is.

I have my mammogram on Wednesday. We finally got our health insurance cards from Hub’s new corporate overlords. I opened the mail, found the card, and called for my appointment all within about ten minutes. The first they had was a week away (now this Wednesday) and I took the appointment. I am pretty paranoid about keeping up with my mammos, so I’m glad that it’s only about ten days overdue from the day I had it last year.

I was supposed to have a relaxing massage last week. I had it scheduled in between two trigger point appointments…I normally go to TP massage therapy once a month (ish). So I scheduled the relaxing massage exactly two weeks after one TP appointment and two weeks before the next TP appoint. And then it snowed, and my relaxing massage appointment got canceled. And I really really wanted it. I mean, not enough to endanger my therapist or myself, but I’m so disappointed. I knew this was going to be a difficult month (technically, it’s been a difficult year so far), so I had planned for the relaxing massage–which I never get–and then plans went pfffft. Since my massage therapist only works two days a week, there were no openings for me to do a make-up massage. I don’t know when I’ll be able to fit it in again.

I told T on Friday that I want this grief to have some kind of end date. But with every day, every month, it stays. It’s a solid burden that I carry with me every. This month is especially difficult as it’s the (one year) anniversary of Mom’s death. And with every calendar day I think of what I was doing on “this” day last year. How we had no idea what was coming. How we took her to an arboretum in the city trying to perk up her spirits…not knowing how soon it would get so bad. How it happened so fast. How I was late to Hub’s birthday dinner last year because I was with Mom and Dad helping them with something. How it was only days after his birthday that she was in the hospital and then hours later that she was gone. Grief has no end date. It plays by no rules. It doesn’t give a shit who you are or what you want. It lives and breathes and grows and growls and harps and hammers and changes and does whatever the hell it wants. And it sucks.

 

 

 

 

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On dogs and doctors and days (long)

It’s been a busy month. Today is the 18th, just FYI.

I got my eyes checked–for the first time in at least six years–only to find that my prescription has barely changed. In fact, the doctor wanted to roll back my prescription a smidge but I declined. I just picked up my new glasses about an hour ago and when I put them on, I felt weird. I think we ended up a tiny bit stronger, but the technician said it could also be the upgraded coating on the lenses that made me feel funky. I’ll have to ease into the new glasses, which is fine because I still have an old pair to use in the meantime. The new glasses have half-frames, so they should be lighter on my face. The second pair of “new” glasses I got are actually one of my old frames with new lenses. I would say it was cheaper to do it that way, but honestly by the time I picked the first set of new frames, I was so freaking tired of looking at frames that I just told her to put new lenses in my old frames. They were in fine condition and they were going to be my back-up pair anyway. Everyone I worked with at the optometrist kept repeating that I had single vision lenses (instead of bi-focals) and they all sounded surprised. Kind of annoying, but honestly the major reason I didn’t go back to get my eyes checked in the last six years is because at 39 years old, the optometrist told me at 40 I’d be needing bi-focals (because that’s “the age”) and I didn’t want bi-focals so I didn’t go back. And here I am, six years later, still no bi-focals. So poo on all of you. Meanwhile, I also hate getting my eyes dilated, but this optometrist had some new-fangled technology that let them take pictures of my eyes and I was able to put off dilation again.

Monday we took Le Moo for her annual “senior” check-up at the vet. We took Butthead, too, because we’d noticed her front two bottom teeth were disappearing. The vet assured me that it wasn’t likely to be the case when we talked in email, but we brought her anyway to make sure. Le Moo is healthy and has lost about 10% of her weight. She went from 94 pounds to 86 pounds, which we are doing on purpose because as she ages she seems to be more prone to limping after running or playing. She’s a big girl and we’ve always had trouble getting her to lose weight, so we gave up and she pretty much maintained a steady weight for all the years we had her. Then we saw the limping issue and we started getting really strict and we’ve noticed it paying off. We’ll keep up with it and try to keep her from injury. The vet looked at Butthead’s teeth and said they aren’t disappearing, the gum is growing up over them. Nothing to do unless it bothers her and so far she hasn’t complained. Unfortunately, the vet is 90 minutes away, so it kind of takes up several hours just going, doing the appointment, and coming home. So Hub’s MLK day off was pretty well used it by that. I’m glad Le Moo is doing well…she’s somewhere around eight years old, which is getting up there in big dog years. And ya’ll know I worry. We’re going to have to get her back to the vet to get her teeth cleaned (she’s got bad teeth, yo), so we’ll be making that trip again in the next month or so. Yay.

So Tuesday was my six month check-up with the gyn onc surgeon. Because of Hub’s status with his company (they got bought out and are in transition), I didn’t want him to have to take a day off to accompany me to an appointment that would likely last less than 15 minutes. So I sent him on his way to work and girded myself for the hour ride to the onc’s office. Under normal circumstances, I would have been nervous but okay to make the trip on my own. I made the appointment for after rush hour and I plotted my route to go on the mostly un-used toll road to avoid further traffic. But…it rained. I knew it was predicted to be “light showers” so I told Hub I’d be fine on my own. When I got on the road it was lightly showering. Ten minutes in, before I even reached the toll road, it was pouring. And I was sweating bullets, hands clutched on the steering wheel, talking myself into being OK. I don’t like driving in the rain and I hate driving on wet roads. I have been in a full 360 degree skid behind the wheel before and it’s not fun, so I try to avoid driving in weather. In addition, the toll road is 60mph, and the highway that I was supposed to be getting on at the other end is 60mph, with lots of traffic. So when I rolled onto the toll road, I basically planted myself three or four car lengths behind a dump truck and kept speed as comfortably as I could. Halfway along the toll road, the dump truck changed lanes and sped off. WTF. But I stayed steady and with the few cars on the road flying around me, I made it along the toll road. At the other end, I decided to exit early onto a main road that cuts through the city that I knew would have lots of traffic lights and lots of cars, but also slower moving. And I splashed my way along for half an hour until I got to my destination. It was a good thing I left early, and I made it with ten minutes to spare at the doctor’s office. The doctor was “only” 45 minutes late (we’ve actually waited for 2 hours for prior appointments!), he spent less than 10 minutes with me…several of those minutes were taken up when I told him my mother had passed and we talked about that. He said everything looked good for me and without any concerning symptoms he had no reason to run any tests. In July I’ll repeat a CT scan as part of my follow-up at my two year mark.

Luckily for the trip home it had stopped raining but the roads were all wet. Even so, I made my way along the major highway back to the toll road, and then meandered along the toll road toward my exit. Unfortunately again, the exit ramp I have to take from the toll road to the highway home is a HUGE flyover, which I don’t even like to drive on DRY pavement. Instead I took the exit for the opposite direction which is a normal exit and I turned around at the first traffic light. And I headed home on more regularly traveled roads, which meant I was more comfortable even though the streets were still wet.

In March I will go for my mammogram. It’s still hard for me to go to these appointments and to know when I get home that I don’t have my mother to talk to about what happened. I thought it would get easier, but so far it hasn’t.

Tomorrow I go for a “consultation” to get my hair did. The salon I selected (different from the one I used last year…partly because the stylist never answered my queries and now because I find out this new salon has more “organic” hair dye) wants me to come in to meet the stylist and to let the stylist see my hair and confirm what I want done. If all is well, I go in early on Saturday to get all the colors. ALL THE COLORS. When I was younger I used to box dye my hair all the time, mostly variations on reds because I didn’t like my plain brown hair. At some point I became too ill physically to dye my hair so I stopped. Then I did it a few more times when I was feeling better, but it was a pain in the ass and everything got all stained (including ME) and I didn’t really love the results, so I stopped again. One year I went and got my hair all chopped off and then I had the salon dye my hair but… well, I wasn’t really keen on how it looked and it seemed like the color washed out pretty quickly and I didn’t want to waste my money.

Only last year did I decide to get something done again and I wanted it to be a little funky to make my mother smile. I got a combo of auburn and violet done, but Mom never noticed and the final look wasn’t as pronounced as I had hoped. Over the past year I haven’t bothered to do anything except let my hair grow out. But after my breast MRI and my colonoscopy and my eye exam, and now my onc follow-up, I knew I wanted to do something fun to celebrate the positive news I’ve been getting. I’ve been stalking Instagram (which I don’t use) for different pictures of what I wanted and I am vacillating between something oil-slick color looking and something more jewel-toned, but there’s definitely gonna be blues and purples and maybe some teal and pink. We’ll see what the stylist says tomorrow. If I can get a picture of before and after, I’ll come back and post them.

I’ve also gone past my birthday. My father asked me three or four times if I wanted to go out to dinner for my birthday (he called around lunchtime) but I kept saying no. I felt bad because I know he likes to go out to dinner and I am sure he felt it was what he could do for me, but I didn’t want to go out. I stood my ground and I thanked him, but said I wanted to chill at home. Hub acquiesced and didn’t do anything special for dinner, but we were together so that was fine. The weather outside was crappy and icy so I was just as happy to stay inside and just BE. My aunt–who doesn’t do so good with the whole grief support thing–called and kept me on the phone for 45 minutes talking about stuff. Two of my three brothers emailed me to wish me happy birthday, and my very old dear friend did the same. But no call from my mom, which was the hardest part. Just knowing the whole day that she wouldn’t be calling and we wouldn’t be talking. It sucked. And now it’s over for another year.

Friday I will literally be in therapy while the inauguration is going on. Like I had planned it that way. The rest of the day I will be avoiding all manner of television and radio and social media. Bleh.

I am still in a pretty good amount of physical pain. The nausea is still around but it feels like less often, so that’s good. Sleep is still sucky. The imbalance is so-so. My jaw pain is still bad, though. Headaches are not quite as bad. I broke down and saw my massage therapist last week so she could work on the TMJ pain, which worked pretty well for about a day. Next week I go back to her for my regular body-work session. One day I’m going to schedule a woo-woo relaxing massage with her because she’s damn good at it (I had one shortly after my mother died as a gift to myself) and I really want it. I wish my insurance covered that shit because it is physically helpfully to me just like physical therapy was, but it’s not covered. And it’s pretty expensive for an appointment…not that I think it’s overpriced. My massage therapist is a boss and hella good at her job…and she works fucking hard to help me. I can’t even imagine how hard it is on HER body to do the work she does! I have no idea if she’s in line with other massage therapists, but I know she earns every damn dollar during our appointments.

I just realized how long this was. I’m gonna end it now. I should have broken this up into separate posts, but in my head it all felt related. Thanks for sticking with me.

 

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And then I cried…

I saw T for my appointment on Friday and I pretty much cried through the whole thing. She tried to reassure me that what I’m dealing with is grief, not a major depressive episode. It’s also combined with where I am in my life, which is kind of lost and stagnant. I’ve been struggling with finding my purpose–or reclaiming it if that’s the case–and she thinks that is making me feel worse. I miss my mother. I miss her love and her support and her company. I am tired of being unhappy with who I am. I’m tired of being unhappy with how I feel about myself. I cried for all of it. I cried on the way home, too. I felt weepy most of the day. Then again, I’ve felt weepy pretty much all the time the last couple of weeks.

When I woke up Friday morning, I found that our upstairs air conditioning had frozen over. Again. For the last three (or four maybe) years, the system has frozen over at least twice during the summer season. Initially, we were told finding a small leak was near to impossible, and we should just refill the refrigerant unless is became an on-going issue. When it became an on-going issue, they tried to find the leak but couldn’t. We’ve been through several different HVAC companies, and no one could find a leak. We were told it was probably in the attic in the line that runs between the outside unit and the inside unit. The only way to “fix” that was to replace it entirely. Entirely$$$$. So the second time it froze over this season, we tried a “sealant” along with a dye, to try to trace the leak. No surprise based on our luck, the sealant didn’t work and Friday morning I saw the ice building up on the system again. Talk about wanting to cry. Not only does it mean more bullshit to deal with, but it also means no air conditioning on our bedroom level. And no a/c means no sleep. If I try to sleep on the main level where there IS a/c, I can’t get comfortable and therefore no sleep. The HVAC guy came back today (that was three days with no a/c in our bedroom) and told us that he found evidence of leaks in the unit inside the house. So now we have to scrape up money to pay for that repair…the part was barely under warranty (somehow we got stuck with a crap warranty for five years instead of ten) but labor is never under warranty. I had to go find some kind of proof of when the unit was purchased because basically we are at 4 years and 11 months. Stupid jerks. Now it’s a couple of days before the part is in and then we schedule for the work to be done.

We’ve been sleeping with the windows open at night, since the weather has cooled off somewhat. Unfortunately, that means my allergies get triggered. And the upstairs gets humid, because air movement is limited. We have NO cross-breeze possible in our bedroom. Boo. I have summer allergies and I have mold allergies. So no matter what, I’m feeling it and now I feel like my bedroom is just coated in allergens from having the windows open. Ugh.

I feel like I’m a walking vat of injury and tears and pain. My stomach is giving me trouble. Not in the normal way, but in a spot of pain that is showing up in a weird place. It’s not an area I’ve had pain in before…and I can’t identify what is causing it. I hate that. I’m having some other uncomfortable pain in uncomfortable places that aren’t really proper to discuss with people. I’m not sure why, but it’s just more to irritate me. There’s a spot on my back shoulder that’s getting rubbed by my bra, and even when I try to sleep it’s irritated.

What’s wrong with me these days? I’ve known my body has been falling apart for years, but this is a whole new slew of stuff. Unfamiliar stuff.

I’m tired. I want to go to bed. The room is too hot for that during the day, even if I were to do it.

I’m whiny. Don’t listen to me. I’m done.

 

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Probably TMI for most

Well, I won’t go into all kinds of details, but still, you’re forewarned.

I was talking about some anxiety in my last post. Here’s what is going on. I’ve been doing hypnotherapy during a few of my regular therapy sessions with T in order to work on my cardiophobia. We’ve actually been working both with CBT and hypnotherapy for my fear of exercise. Part of my fear is because of my heart, but part of my fear is also putting myself in more pain than my daily dose…on purpose. I’m in pain pretty much most days, but exercising means I’ll be suffering more pain because of strained muscles and such.

So part of my therapy is to exercise. Shocking, I know. We have both a treadmill and a recumbent bike in our house (the treadmill is like…oh, 15 years old, but it still works!), so I have options on what I can do for exercise with machines. The bike is newer than the treadmill and it has those little dohickies on the handles that measure heart rate, which is a no-no for me. Just watching the heart rate go up is an anxiety trigger. So many people say exercise helps their anxiety, but it’s actually a major trigger for me. I started riding the bike (I figured it was lower impact on my arthritic knees than the treadmill) every night, with the intention that I was riding it to work on my fears, not on my weight loss. It gave me permission to see the exercise as something different…not to be perfect at it, not to think that if I only ride it a few minutes every night that it was a failure because a few minutes is a waste in the weight loss world. No, it’s part of my therapy, part of my recovery, and even sitting on the damn machine is an accomplishment.

I started slow with the bike, literally and figuratively. And I met my first goal of riding the bike three days in a week…and then I just kept going. I’ve been able to increase by one minute since I started. I’ve learned not to put my hands on the heart rate dohickies…and if it is too tempting, I’m going to put socks over the handles to make them not work. I listen to a little music, I play a game or two on the iPad if I have it. I go in, I get on, I ride, I leave, I recognize the accomplishment of what I’ve done. I went ten days. Some of the days I could have talked myself out of it (the a/c upstairs died again…my knee hurt, I had another owie which I’ll explain shortly) but I didn’t talk myself out of it. My mental recovery seems to be so much easier for me to work on than my physical. I haven’t really ruminated on that very much, but I suspect that is coming in therapy soon.

Monday night I went to shower and I realize there is a redness under my right boob. I’m endowed and…droopy. I’ve been that way all of my adult life, I’ve never gotten a heat rash or sweat rash under my boobs before (I am wondering if this is because of the surgical menopause and hormone issues). I don’t sweat like normal people. My first thought was oh shit it’s breast cancer because it was only under one boob and I know that there are some breast cancers that present that way. I managed to convince myself it wasn’t cancer even before the redness showed up under my other boob. At that point I was pretty well sure it was a heat rash (or sweat rash) from riding on the bike. So now I’ve got knee pain, foot pain (stupid plantar faciitis) and underboobs rashes. *sigh* I go buy these things that go under the boobies that is supposed to help wick away sweat. The are uncomfortable and weird and they move around. Joy. I also buy some tea tree oil and a powder for rashes and fungus, in case it’s a yeast fungus under there. The under-boobie wicky thing seems to help but not make it go away altogether yet.

Wednesday night I’m on the bike again (I’ve even been able to ride when I’m home alone, which is a big deal for me because if I have a heart attack on the bike…and I’m alone… shudder) and I’m like what is that pain? It’s in the crease of my left leg where it meets my groin. And I’m thinking it’s another damn heat rash. Great. I put some gauze in the crease and try to deal with it for overnight. Next day, I put another clean bit of gauze there to keep the area from rubbing and getting worse and I go about my day. I get on the bike again last night and I’m like … unh, that hurts. I finish my predetermined ride and go shower and suddenly I’m realizing it’s not the heat rash in the crease of my leg that was hurting. I have a cyst…my guess is an infected cyst (I get sebaceous cysts under my arms sometimes, but not for a while) or it could be an ingrown hair. It’s, uh, down there. Ya’ll ladies know what I mean. It’s in an unfortunate place, making sitting, standing, walking, lying down all very very uncomfortable. Dammit.

I tell Hub about the issue (he looks somewhat horrified), I go to sleep and wake up this morning first thing to call my doctor’s office. I don’t want to mess around with this area, so I beg them to fit me in today. They do and I go see one of the other doctor’s in the practice. She says “abscess” but won’t otherwise identify if it’s from a cyst or an ingrown hair. She doesn’t want to do anything with it but suggests I see my gyno to see if they want to drain it or what. I tell her my gyno is an hour away and not likely to be able to fit me in today, so she suggests I see the gyno in their extended practice and she goes to make an appointment for me. When she comes back, she tells me I’ll be seeing the nurse practitioner that afternoon, and oh by the way here is a prescription for bactrum (antibiotics). Oh how I love pills. And ABs are my favorite.

I go back later to see the NP, who tells me she can’t drain cysts and all the doctors are booked. But she graciously offers to do a lookie loo to see if the cyst actually needs to be drained. She measures it and says it doesn’t look too big, but writes down the info for future reference in case I come back with an issue next week. “Good news!” she chirps. “I wouldn’t drain this. It’ll drain on its own. Take your ABs and use warm compresses and a sitz bath as often as you can manage.” We talk about timing for when the pain will abate and what to expect from the “draining” and I go home.

The first time I saw the cyst last night, it was white. By the time I got home and everyone was done poking at it, it was a purple-red. Yay. (I told you, TMI.) Upon getting my ABs, I come home and go look up my blog post from when I had to take these particular ABs, and I apparently have nausea, bad taste in my mouth, and dry mouth (editing to add, and dry/itchy eyes near to the end of the course of ABs) to look forward to for ten days at least. Two pills a day over ten days. The NP told me to be happy, the other option is something like 4 pills a day over 20 days or something ridiculous. But at least I have experience with this AB, so maybe I’ll be okay with taking it more easily. (Prolly not, but one can hope.)

This is what I get for exercising? One time I went to vacuum my bedroom…I plugged in the vacuum and 10 seconds later the circuit blew. I reset it, plugged the vacuum into a different outlet across the large room and 10 seconds later another circuit blew. I reset it, used a plug in the upstairs hallway and THAT one blew. I decided at that moment that G-d did not want me to vacuum. I wrapped up the cord and put the vacuum away. So, is this what I’m getting about exercising? Multiple messages saying “don’t do it!” Well, another conversation for therapy, I guess.

Also, ow ow ow ow. 😦

 

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The end of days

****WARNING****  this post contains frank conversation about death and dying. If you are triggered or distressed by this kind of imagery or thoughts, please don’t continue reading.

Mom has since passed away. I am thinking a lot about her last days. Regrets linger over things I couldn’t change.

I was trying to get private duty nurses in to help us take care of her in an appropriate manner. I know my father was struggling to keep Mom feeling comfortable and such, but I don’t feel like he was tending to her hygiene in a good way. He was thinking like a husband, not like a caregiver, and was letting her stay in dirty clothes because he felt it was easier for her. Mom ended up with a bed sore from sitting in one position all the time, and she was sitting around in dirty shirts and pants (not filthy, just not fresh clothes every day). I didn’t realize what was happening because I wasn’t living there until after the bed sore appeared and I found out how he was taking care of her. Then Dad and I tried to take care of Mom, but it was a struggle, especially since I wasn’t there all the time. I’d get calls at 11:30 at night, or 2 in the morning, asking me to come help him clean her up. At that point, they were still struggling to use the bathroom in some normal fashion…and it WAS a struggle. Then as Mom’s capabilities decreased, Dad still wanted her to use the bathroom, which required even more of my assistance more often. It wasn’t that this was an issue for me–despite my lack of experience in caring for an adult in this situation–it was that I didn’t LIVE with them. Yes, I live close by, but it’s not the same…he wouldn’t call me until it was too late and he was in the bathroom with her and needed help. And the rest of the time he didn’t make her move from her position in the recliner…which meant she was probably sitting in wet and/or dirty pull-up adult diapers. It was a sad and painful situation for all of us.

I struggled to find someone to come help us, in part because my parents didn’t want anyone to come in and help, but also in part because I was afraid to make the wrong decision on who to bring in. In the end, I found a group to help us, referred to us by one of the women who cared for my grandmother in her last years. Unfortunately, that woman was out of state now, so I relied on her network of people who still lived here. The main issue is, I regret not forcing this on my parents earlier, because maybe we would have avoided the bed sore. Maybe it would have kept Mom a little more comfortable, and maybe it would have helped Dad hold onto more energy.

I also struggled with the idea of forcing hospice on my parents. Although I knew it would be helpful, again my parents refused to use the service until I basically gave them no option. And it was really too late. We were formally enrolled in hospice on a Friday night, and Mom passed away five days later. Well, it wasn’t completely too late, because the hospice nurses were helpful for those last fourteen hours or so, just in a crisis kind of way.

The biggest regret isn’t even something I have control over, which I realize makes no sense. How can I be regretful over something I didn’t do? Anyway, my father was watching Mom’s blood sugar because it had been going higher. The doctor said it was steroid-induced diabetes, but now I’m thinking it was Mom’s body’s way of shutting itself down in a way that wasn’t so painful. But really, the point here was, her sugar went way up, Dad panicked and called 911, and they took her to the emergency room. There, they went by protocol and began giving her fluids and heart medication (her heart rate was high), then sea-sawing back and forth with medications trying to get her sugar to the right level. Not too high, not too low…while forcing out the acids from the ketoacidosis she was dealing with. The fluids, though, were an issue. She became swollen in the emergency room and then later in the room when she was admitted. She became less and less aware of what was happening around her (she was pretty unaware when they called 911), but she was still verbalizing some things. When they went to change her and clean her up in the room, I shooed everyone out (other than the nurses, obviously) for privacy, but I stayed so she wasn’t alone. And she verbalized a lot during that time…a lot of chanting NO NO NO and OW OW OW when they moved her around. I hope to heaven that was involuntary and that she wasn’t really feeling those things because it just about killed me at the time. When they finished taking care of her, I ran out of the room in tears. And I was absolutely furious that my father kept refusing pain medication for my mother. He wanted her to “wake up and recognize” him. She was long beyond that, but he kept refusing the pain meds because he thought it was the medication and/or the high glucose that was keeping her “drugged up”. No matter what we did to try to show him that she was in pain, he refused to see it. He was so deep in his own pain over losing her that he refused to see beyond that. I’ve since talked to T about it and am trying to accept that he was dealing with the situation the only way he knew how, but there’s still a part of me that hurts at how he treated her in those last days/hours. She should have had pain meds every time they changed her and cleaned her, or moved her, or did anything to her.

It’s my understanding from the hospice research I did that giving Mom all those fluids likely hastened her death, and potentially put her in more discomfort because the fluid goes to places it shouldn’t…like lungs. So there’s another part of my regret…that she had to be in the hospital, getting medication after medication, and hours and hours of fluids. And that she was in pain and discomfort for so long. Even before she was admitted to a room (we got to the ER at 5:30pm and she was admitted to a room at 7:30am the next morning), I was asking how and when we could take her home. The hospital staff wanted to stabilize her from the ketoacidosis…and my father agreed with them. By the time we were able to convince him that we were going down a road we didn’t want to travel, we rushed through to get her home that evening. And my uncle was able to convince my father that Mom needed morphine. We made doubly sure that she got another round of the morphine before they put her in the transport ambulance and transferred her home. And once again, I was the one who had to push to get Mom home…I was the one who organized the transport, the oxygen, the meds for home, the private duty nurses to be waiting at home for us to arrive…and on and on. I’m the baby in my family, and yet I was the one dealing with everything.

We had more issues at home with the oxygen tank. No matter what plug we put it in, it would shut down after 10-20 minutes. T says it was Mom’s spirit shutting down the unit because she didn’t want the oxygen. I wouldn’t be incredibly surprised to know that was true. The hospice nurse arrived and immediate administered more morphine because Mom’s face was scrunched up. Then she began going over instructions on how and when to give medication at home. We had a private duty health aide staying overnight and she learned the information (along with my sister-in-law) from the hospice nurse. The hospice nurse–along with my siblings and my husband–made me go home for the night at that point. Even though they were still figuring out the oxygen machine, they had plenty of people there to handle things–plus the hospice nurse–and I was really so far beyond shut down that I couldn’t have helped even if I had wanted to. I had been going since 8am Monday morning, right through to that time which was 11:30pm Tuesday night. I hadn’t slept or napped any of that time, and I’d barely eaten, though I had managed to try to stay hydrated as much as possible. This was the point where I reported to T that I really gave up. Someone else had to take over what was happening and what needed to be done. Where in the hospital is had been all me handling things, at the house at that point, there were seven or eight people sharing the responsibilities. I wish some of those people had stepped up at the hospital, so I hadn’t felt so alone with all the responsibilities.

The next morning, our “regular” hospice nurse came in to talk to us, to evaluate Mom, and to give us some more education on what was happening. She changed Mom’s medication schedule, administered some more meds, and then she sat us all down in another room. She said that from her experience and based on her examination, she didn’t anticipate that Mom had much time left. She said she wasn’t a doctor or God, but she had two decades of experience and she doubted we had more than 24 hours. She said she’d been surprised before, but she wanted us to understand that we were very near the end.

She wasn’t wrong.

Within the hour of that statement, Mom stopped breathing and her heartbeat slowed to a stop. Dad was with her, the rest of us were in the next room with the hospice nurse and had rushed in when we heard Dad yelling. Only one of my brothers and his wife weren’t in the house with us when Mom passed. The hospice nurse was still there and she continued to monitor Mom with her stethoscope until Mom’s heart had completely stopped. The minutes and hours following are a mishmash of images and phone calls and information and scheduling for things to happen. I was the one doing all of that, and although I’d like to say I remember none of it, a lot of it is burned in my memory banks.

I have traumatic flashbacks of those last thirty plus hours. I’ve started working with T about it, because there are too many images, sounds, and smells in my head that are haunting me. Already one session/set of exercises with T have helped. I go back on Monday again to continue working with her.

This was not how I had hoped my mother’s last days or hours would come about. I know many will say “it is what it is” but that doesn’t stop me from feeling sad about it. The best thing that came out of this is that we WERE able to get Mom home in time for her to pass there. That’s what she wanted.

 

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Too much or too little?

I had a session with T today, which was kind of all over the map. Part of what I wanted to talk to her about was V (pt 1 and p2). I haven’t written much about my sessions with V because I haven’t felt like we’ve done what I wanted to do. Very specifically, I approached and began seeing V so that I could attempt to do hypnosis with a therapist who specialized in it, versus seeing a hypnotist who had no therapeutic training. I was looking to get assistance with my insomnia type symptoms (I say “insomnia-type” because I don’t feel I have true insomnia, I just have shitty sleep), which was something V said initially she could help me with. In the end, she preferred not to use “hypnosis” and instead went with “breathing and relaxation” techniques to work with me. As well as EMDR.

I’ve had seven or eight sessions with V, and while I did discover where my “not enough” feeling came from, I haven’t had any progress with my sleeping. And I haven’t felt any other progress, nor has V seemed interested in pursuing hypnosis. I also feel very uncomfortable that at least once a session, she’ll say she’s not sure if X will work, or that she also struggles with sleep but I shouldn’t be concerned it will always be that way for me. I just feel like I’m talking to a therapeutically trained ME. And I don’t want to talk to me… It sounds weird, but that’s how I feel. So I pretty much had decided to discontinue sessions with V, but I’ve never…fired a therapist before. I didn’t want to make V feel badly because I didn’t want to continue. I know it isn’t my issue and she is a professional, but honestly she feels so insecure to me that I hate to feed that feeling by firing her. But I’m not getting what I want from her and I don’t want to continue if that’s the case. I already have T–who works well for my on-going needs–I don’t need another regular therapist.

So when I sat down after dinner, I crafted a short but complimentary email, and after re-reading it a couple of times, I sent it. Now I wait to hear back. Unh.

My plan, at this point, is to give acupuncture a go. I’ve had it before and although it didn’t help at that point (for horrendous menstrual cramps about 16 years ago), I know it does work for a lot of things for a lot of people. I just need to work appointments into my schedule, because I know acupuncture is an on-going treatment that often works better with multiple appointments per week, or at least one every week for a lot of weeks. But I definitely want to give it a try, for the fatigue/insomnia as well as chronic pain. T approved of the plan I had set out, and reminded me that I need to keep myself balanced or I was liable to break down.

That was the other conversation I had with her. I wanted to really find out how I know if I’m just avoiding everything by trying to stay busy and/or zen/zone out. I know in my heart that I’m feeling the emotions relating to my mother’s illness and the situation we are in. But I am concerned that maybe I’m not giving my emotions ENOUGH attention. How do I know? How do I know that I’m not mis-using my coping skills for avoidance purposes? She said there’s no answer that suits everyone. To try to pay attention to whether I’m avoiding things that need to be done or dealt with by using my coping skills, or if I’m still addressing things while fitting my coping skills into my life. And that if I spend more time coping/avoiding some hours/days/weeks, that I shouldn’t be too concerned.

I’m not well known for allowing myself to be emotional, so I worry about me avoiding or repressing the emotions surrounding what is happening daily. I just can’t decide what feels right and balanced. T tells me to quit worrying about it. Seriously, has she met me? 🙂

 

 

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