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Calgon take me away

Preface: This blog is about me and my experience/feelings with regards to medications. It is not a judgement on or valuation of what anyone else does/feels with regards to their anxiety, depression, pain, insomnia, allergies…etc.


Monday morning I went to physical therapy for my shoulder. I’ve been going for close on to six weeks I think, but only once a week because they are so booked they can’t usually fit me in twice a week. This past Monday, I actually cried during the appointment because the pain was a) so bad and b) so frustrating. For the first three weeks or so, I was doing my exercises religiously at home. Then the therapist started adding in more and more exercises–without giving them to me in written or picture form–and I got overwhelmed and lost. I still try to do stuff daily, but it’s not everything I should be doing. Even so, I’m continuing to progress with my flexibility, but the pain continues. And I guess because the therapist is trying to push my range, the pain is…bad.

I am extremely sensitive to medications, and have been for most of my adult life. I don’t even take OTC pain killers like ibuprofin or acetaminophen or tylenol because they either screw up my stomach or they don’t work. I will take anti-biotics when prescribed, but I hate the experience and it’s mentally very challenging for me.

So last night I was in the shower and thinking about how much my shoulder still hurt, how sore it was, and I was under the hot spray of water and thinking…if I only took pain killers this would be a lot easier. And I knew…I KNEW part of the reason I don’t take pain killers or cold medication or antihistamines or sleeping pills or any other medication is that I would cause a bigger issue for myself. It’s NO LIE that I have medication sensitivities…I very much do have them. But maybe if I searched hard enough I could find things that work for me. I don’t do this…and here’s why.

About fifteen years ago I had a bad cold…a sore throat that was horrendously painful. I started using these OTC throat drops that had some kind of liquid medication in the middle. It was probably Haul’s brand, probably cherry flavored. I used them constantly in the beginning and they seemed to help. Then my throat started getting better but I literally got addicted to them and was continuing to suck on them like they were candy. I had to use them. I was addicted and I had to have one in my mouth almost all the time. It was vaguely terrifying when I finally realized what was happening (maybe like 3-4 weeks later). I quit them cold turkey and made Hub take the bag to work with him to throw away. I knew if they were in the trash in my house, I would dig them out and eat them. I don’t buy those kind of lozenges anymore, though in the last two or three years I have started buying honey-drops for sore throats.

I don’t do drugs and I don’t drink any alcohol and I don’t smoke. I never did any of those things. I feel like if I did or if I started using something like pain killers or anti-anxiety medication or sleeping pills, I would be using them constantly and for the wrong reason. I’d be in less pain, I’d probably have less anxiety, I might sleep more, but I’d also be zoned out and not living. I would just figure out the best way to shut myself off from everything and everyone in life by doping myself up on OTC or prescription medication. I would be gone, in every sense of the word. I’m not sure I’ve ever admitted this fear to anyone out loud, but in my heart I know that I’d use the medications to hide away. I’m not sure I’d be doing anything illegal or overdosing on the meds–or even overusing in any significant way–but I’d be using them in a way that would excuse me from life.

I feel like my anxiety over medications keeps me safe from all of this. Yes, I DID use some pain medication after my first surgery, but it was only a day or so (and so regimented!) and then I used tylenol. And then after a day or so I used nothing. The second surgery I didn’t use pain meds because I didn’t like the way they made me feel the first time, so I used tylenol as needed and I suffered through. I suffer through pain on a daily basis because I’m afraid of who I would become if I muted all the pain in my life…physical and mental.

Before I first got sick in 2001 (at 29yo), I’m not sure I ever really needed medications. Sure, I probably took cold meds on and off over the years, and never gave it another thought. Yes I did use Advil every month for cramps (which is how I ended up with stomach issues!) and probably occasionally for headaches. But after I got sick, everything changed, including who I really was. Who I really am.

The physical therapist said that I could go back to my Ortho doctor and ask to get a steroid injection to help with the pain as we continue with rehab, but I declined. I hate the pain I live with daily, and I hate the pain that reduces me to tears during PT, but the pain reminds me that I’m alive. I’m alive and I’m experiencing life.

This all sounds very fucked up. I guess I’m not surprised at that revelation.

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What am I going to do

I’m still feeling lousy. There are days when I barely have the energy to do anything, including feed myself. I force myself to get up, do things, take care of the dogs and myself. In between, I rest. I get outside with the dogs for a 10-20 minute stroll every day around the yard as the weather allows so I am at least moving somewhat. I’ve read a couple of books and I’m trying to do some crocheting in small doses.

But I feel lousy. My imbalance, the nausea, heartburn, fatigue, pain…it’s all still here. Sleeplessness, heat intolerance…I’m hot and cold all the time. Sometimes I feel sweaty when there’s no sweat. Sometimes my hands and feet are sweaty and clammy. Today I have tingling in my fingers and face. And always the pain in various parts of my body. Both shoulders are bad, and for one of them I can’t lift my arm up above shoulder height. I’m eating small amounts of food and feeling full, then feeling hungry again later. Rinse and repeat when I eat again…small amounts of food and feeling full, then hungry again.

Our health insurance doesn’t kick in again until May 1st. Even so, the last time(s) I saw my doctor, she found nothing troubling. It could still be grief. I’m sad a lot, but I’m also exhausted a lot. Sometimes I’m not sure if I’m sad or tired. This stuff has all been going on since the beginning of February. It doesn’t seem as if it’s going away…it’s coming up on three months. I can’t imagine it’s just going to disappear anytime soon.

As if I didn’t have enough to think about, the biggest issue looming is that Hub is flying to California soon for his sister’s wedding. He’s going to be gone for five days. And I’m going to be alone, having to take care of myself and the dogs 24/7 for those days. I’m going to be in this big stupid house all by myself, day and night, for five days. I’m going to have to be up early to feed the dogs, and then I’m going to have to be up and alert late to make sure they get out at night before bed. And then I’m going to be alone overnight in the darkness. I haven’t been alone like this since before I first got sick over 17 years ago. The last time Hub traveled–maybe eight years ago–I stayed with my parents with the dog we had at that time so they could help me.

But it’s different now. My mother is gone, and she’s the one who kept everything in line in their house. My heat intolerance is bad and Dad still keeps their house too hot for me, so I’ll feel horrible all day and not sleep at night. Butthead is difficult to keep track of, and I can’t trust my father or my brother to make sure she’s not eating things in the yard late at night or early in the morning.  The friends I have who are local have their own lives, work, families, pets, I can’t ask them to come help me. I considered hiring someone, but having a stranger in the house while I’m here alone is frightening to me. I’ve considered staying up all night and sleeping all day, but the dogs go out multiple times during the day so I’d have to be awake and dressed to do that repeatedly during daylight hours. That means no sleep at night and basically no sleep during the day. I could try to sleep at night but being alone in the house overnight is scary for me and I’m not sure I’ll sleep. Not sleeping will, of course, make everything worse.

This all makes me feel like an invalid. But I’m honestly afraid to be alone 24/7 for five days. I don’t know how I’ll deal with pain and anxiety and exhaustion without any support or reprieve from taking care of the dogs and myself. There are moments when I think I will be able to handle it, and then there are moments when I am positive I won’t be able to handle it. The truth will probably live somewhere in between, in the end. I have avoided thinking about this since February, when Hub bought his tickets, but it’s coming too soon for me to keep pushing it aside.

 

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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.

 

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Liar liar brain on fire

I’ve been struggling with my health anxiety for over a week. As per usual, it’s pretty centered around my heart. I’ve made an appointment to see my cardiologist, but the online scheduler only had an appointment for NEXT Monday. I’m going to call in the morning to see if they have anything sooner, whether it’s a cancellation or what. If they can’t fit me in sooner, I might also check with my regular doctor–but getting in to see them is pretty difficult these days.

I keep trying to tell myself that if I’m still alive after this week of potential heart pain, then it’s likely just anxiety plaguing me and not a “real” issue. It’s my anxiety lying to me. My left arm hurts, my back hurts, my jaw hurts, I feel slightly off-balance, I’m nauseated. All those things could mean a heart issue…and all those things could be just my daily life. I can’t get around my lying anxiety brain to figure it out. I’m both hot and cold, sometimes feeling sweaty when there’s no sweat there. Right now my palms are warm and feel like they’re sticking to my laptop, but my feet are freezing cold and clammy.

I’ve had a pain in my lower right back today. I always have pain in my back, but this feels different. Is it real or anxiety? I hate that I can’t tell. I don’t understand how I’m supposed to know what is real and what isn’t. I don’t know when to seek emergency treatment and when not to. I don’t want to spend my life in the emergency waiting room…our local ER is terrible and our trips tend to last no less than 6-12 hours there. Most of that in the waiting room trying to get a bed to be seen (usually by a dismissive physician or physician’s assistant).

I’ve been depressed and not acting normal, not moving around much, not eating well, not drinking my water. I know this is all contributing to the fact that everything hurts me, but I can’t seem to get around it. I’m sitting poorly, also contributing to my pain. I’m not sleeping, some of which from pain, some because of the fear of having a heart attack.

I can’t even tell you how many good-bye letters I’ve written. In my previous house, I used to have them scattered around in weird places. Mostly hand-written in the dark of night when I was sure I wouldn’t make it through the night. Sometimes I write them on my computer and drop them into weird folders. Am I the only one? Does anyone else do this? I so wanted to write one the other night because it was that bad. I didn’t do it. I wanted to wake Hub and tell him good-bye, just in case. I wanted to do it before he went to sleep. I write the notes because I don’t want to frighten my wonderful husband…I can’t stand keeping him awake when he’s the one getting up early every morning to take care of the dogs and then go to work to support both of us.

I was sitting here earlier, just waiting for the time to go by. And I started wondering WHY I was hoping for the time to go by more quickly. I know I want to get up first thing and make calls to the doctor, but really, what is that going to solve? I’m not likely to get an appointment right away, so I’m still stuck in this anxiety limbo.

As I type, I’m restless. My jaw is hurting again. My back. My arm. I want to sob, but crying only makes me feel worse. I want to curl into a ball, but it hurts too much. I want to lie down and go to sleep but I’m afraid. I heard once that there are more heart attacks in the early morning hours, so I’m afraid to go to sleep because I’m afraid to have a heart attack overnight or in the early morning hours. For some reason my brain thinks that if I’m awake, I won’t have a heart attack. Or maybe I think if I’m awake, I’ll be able to get help if I start having a heart attack. Probably the latter.

This sucks so much. I hate this health anxiety. I hate that this is one of the few things that I’ve not been able to conquer. Sometimes I do so well, but other times I’m just so suffocated by it.

 

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Unnoticed and feeling the guilt

I am having a bad day. I am going to whine about it. You are forewarned.

Technically speaking, this is day 2 of the “bad day”. On Monday, I decided for no apparent reason that it was time for a haircut. I don’t like haircuts, they give me anxiety. More specifically, making the appointment and going to the salon (and being IN the salon) gives me anxiety. The haircut is not that big a deal for me anymore…I know it will grow back. I know if it’s a bad cut, I’ll deal with it somehow. It’s just hair. I came to that conclusion when about 8 years ago I cut off 23″ of hair and sent it off to one of the organizations that makes wigs for children with cancer. It was the same way that time…I made the decision, I went, it was over with, I survived it and the ensuing days/months/years with short hair (for the first time in 30 years). Since then, the change from long(ish) hair to shorter hair doesn’t bother me. But having to call to make the appointment…and then survive the appointment, they are anxiety-making.

I am not good at small talk. People think I’m good at it, but I hate it. I spend days before trying to think of things to say and/or talk about. Then I feel like an idiot having the conversation. I don’t know the stylists, I don’t know their lives or their interests…I just feel dumb. In addition to that, I have anxiety over the hair washing station. I hate having my head resting on that thing because it hurts. I’ve heard of instances where people can have strokes from resting against those tubs (true? not true? does it matter to anxiety? nope). I also end up with muscle strain from being stretched to sit with my head on that tub thingy. Sometimes I wash my hair at home and go with wet hair so they don’t have to wash it again. But then I feel like the haircut isn’t as good because they didn’t see my hair ahead of time, dry, to see how it needs to be cut. I also feel judged when I’m sitting in the salon…just because I feel like it’s a frufru place. I feel out of place there.

Okay, so I called and made an appointment with the stylist I saw last time. She does an okay job and isn’t overly talkative. She looks like Pink! I’m just saying, she’s a bombshell. I’m always intimidated by her. But I wanted to get something fun done and she’s the queen of that kind of stuff (her instagram rocks). I found a color I wanted for my hair and brought it with me. She did the color job, cut my hair, then blew it out (without asking). I both love and hate having my hair blown out. I like it because it’s different and I can’t do it at home. I don’t like it because it doesn’t look like me and then I never know how my cut really is with my normal hair. I left the salon (after leaving a rully nice tip because that’s how I have to be) and came home. I wanted my hair to be reddish purple. Yes, I said it. My hair is normally brown. I used to dye it red all the time…oftentimes a very unnatural red because box color is hard, ya’ll. So I came home and I am looking at my hair and it’s reddish. But I see no purple. I had worked myself up to purple-ish hair and it’s just…red. Hub says he sees purplish, I don’t see it. I’m disappointed. I haven’t washed my hair yet so I have no idea if the cut is okay, but even if it isn’t…it just is what it is. And it’s shorter than I expected…as it always is.

So I’m home. And I’m trying to ignore my hair. And I talk to my mother, who only knows I went to get my hair cut. And she’s telling me that my brother (who lives with them) is upset about something he didn’t know about…because he has to know everything. Even when it has nothing to do with him. And I’m one of the people who knew about this…THING that has nothing to do with him. Part of it was my doing. So she asks me to tell him about it and I get mad. I tell him, then I tell him if he has questions he should ask her…which he doesn’t bother to do. He just wanted to be mad and make my mother feel badly. He’s really self-centered and doesn’t think about other people. He’s sure the world should revolve around him. His schedule, his knowledge, his life. It’s very difficult for me because although he’s older than I am, I often feel like I’m taking care of him. I often feel like everyone is catering to him, even though he’s entirely capable of being an adult.

So that was yesterday, and now it’s today. I go over to go with my parents’ to my mother’s lymphedema appointment and I tell my mother than I’m angry with my brother. She takes his side, tells me not to be angry. And I tell her I’m allowed to be angry. Then she tells me she likes the color of the pants she’s wearing. I bought her those pants so she’d have something with larger legs that would cover her lymphedema wraps. I picked out the color for her, I ordered the pants, I did it without asking because I knew it would be helpful. She said she liked the color of the pants but didn’t say thank you to me for taking care of it for her. She didn’t mention one word about my obviously reddish hair. She only told me not to be mad at my brother because “he can’t help it” if he is the way he is (she made him that way because she lets him get away with it) and told me she liked the color of her pants.

I helped her roll her wheelchair into the bathroom so she could go before we left for her appointment, then I sat down in their living room and texted Hub and said, “I feel unnoticed and unappreciated.” He wrote back that he was sorry, that he loved me, and that he liked my hair. I help my mother down the hall in her wheelchair and into the mudroom to get her coat on. We get in the car. There’s no conversation because I don’t initiate conversation. Normally I try to keep Mom occupied, but I didn’t today. We get to her appointment and the therapist starts talking about wrapping Mom’s legs at home. And I’m volunteered. Because my father has no patience. And who else is there? And in my head I’m already thinking of how often I’m going to need to unwrap and rewrap her. What weird hours of the day she’s going to want that done. The therapist tries to train me to wrap my mother’s legs–feet, calves, thighs–so she does one leg and I do one leg. My OCD gets to me, it takes me three times as long to wrap the leg I’m working on versus the therapist (I know, she’s been doing it for 14 years…but it’s my brain hating on me). We finish up and go back to the car. I’m silent on the way home, though I’m texting with another brother about some paperwork we’re trying to finish up for my parents. And we’re talking about the brother who lives with my parents and how frustrated I am.

We get home. I put together all the wraps from the last appointment to take home so I can wash them…because who else is going to? I ask Mom if I can get her anything and she says no. Then she says, “You got your hair cut?” I said yes. That was the end of the conversation. I put my coat on and came home to take care of my dogs and wash the wraps.

I feel like I’m unnoticed and I feel terrible for feeling this way. I wouldn’t be anywhere else. I wouldn’t NOT do the things I’m doing. I wouldn’t not buy the clothes she needs, or try to buy the wheelchair cushion she needs (it’s too hard and it makes my back hurt–not thanks for thinking of it, but can we try finding something different…), or wash the wraps, or go to the appointments or buy the food or supervise the cleaning people or clip her toenails or cut her fingernails or make her soup the way she likes it or  … or… or…

But I’m still a person. I still want to be seen as a person. Their daughter, their sister…not just the person who is doing all the things that no one else is doing. Not the person who had to learn how to read and decipher legalese to figure out their trust paperwork. Not the person who had to figure out how to deal with their bonds, or transferring their accounts into the trust…or how to move all her volunteer work to other volunteers. I’m still me. I’m still part of the family, I’m not just a personal assistant or representative or paid caregiver. I want to be acknowledged, I want to be noticed, I want to be appreciated for the things I’m trying to do to take care of things. No, I want to be noticed and appreciated, period.

I’m tired. I can’t take a break because there’s no one else to do these things. They won’t let me hire someone to help them. And honestly, even if they did, they’d probably want me to be there to supervise them, like with the cleaning people. I’m not able to do as much at my own home as I used to. Laundry falls behind. The dogs get left at home more and more…I don’t see Hub as much. The dishes stack up in the sink or sit in the dishwasher. Things that need to get done are not getting done at all. I feel lost, like I’m losing who I am. And I feel absolutely horrible about feeling that way because I love my parents and I want to do everything I can to help them. I didn’t know this would be so hard. I’m terrified because I know this is only going to get harder as Mom gets sicker. She’s lucid, though she has trouble hearing and remembering things right now. But in truth, this isn’t the mother I remember, even in the last couple of years that she’s been fighting with this. She’s unhappy. She’s moody. She’s short with her temper. She acts like a petulant child. She complains that no one does anything right. I know she’s sick. I know this is incredibly difficult for her. Which is all the more reason why I feel horrible for feeling the way I do.

I try really hard not to be short with her, and I try to do things the way she wants–generally asking specifically what she wants and encouraging her to tell me how she wants it done. She’ll tell me it’s fine, then complain when it isn’t done to her standards or satisfaction. As soon as I walk into the house she starts complaining…about my father, about something that happened or didn’t, about the doctor, the pills, the cleaning people, the phone calls, the crochet, the television…whatever is sitting on her mind. She doesn’t even say hello or ask how I am. She almost always asks about Hub–who we all claim is her favorite child–but she doesn’t often ask about me. That’s another reason why I feel like I’m invisible. If I limp because of my plantar fasciitis, she might see it and say “why are you walking like that” but that’ll be it. Most times she won’t even notice.

I know that’s my mother still in there. I don’t think she knows that I’m still in here.

 

 

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I’m cheating on my therapist (part 2)

You might want to read part 1 first. It’s kinda long…

Session number four (at least of the “active” sessions) started out with V talking to me about being bullied again. But this time, it was my grandmother that we were discussing. During my very first conversation with V, we were talking about those “resource” people and V was asking me about extended family like aunts, uncles, grandparents, etc. I told her that I loved my grandmother very much, and that she was a big part of our lives growing up and into my adulthood. But that I had some mixed feelings about her, because she was always harping on my weight.

And like some weird television show, I had one of those epiphany moments. I realized very clearly how abusive my grandmother had been to me all my growing up years. How much she had damaged me, hurt me, bullied me, abused me. There was no physical abuse. She loved me. But she hurt me so much.

She compared me to people around us, other girls, other women. She told me I’d never be happy if I didn’t lose weight. She told me that I wouldn’t get a husband if I didn’t lose weight. She took me to her aerobics class as often as she could (very often in the summer when I was out of school), where I was forced into working out with other women of all shapes and sizes. Then she pointed out how I couldn’t keep up with this woman or that woman. She compared me to her (younger) friend’s daughter, a girl who was two years ahead of me in school. Pointed out how slender and in-shape that girl was, how smart she was, how happy she was.

She watched what I ate when we were together. She pointed out what I shouldn’t be eating. She encouraged me to deprive myself, and to eat only the things she gave me. She chastised me when I ate too much, or pointed me away from the cookies or the cake that she had baked for others in the family.

I was the only girl in my family, the youngest of four. I was also the only one of the kids who was overweight. I snuck food because I felt deprived of the food. Oh don’t get me wrong, my mother was watching me, because she, too, was unhappy that I was overweight. But she was more subtle about what she did and said. And she didn’t do the overt comparisons that my grandmother employed.

I went to fat camp, subsidized by my grandparents, because I know my parents couldn’t have afforded it at that time. It was a spectacular failure. I might have lost five or ten pounds at the time–the diet was very restricted and the activities were very forced on us–and I gained it all back very quickly…and then some, I’m sure. And my grandmother pointed it out, reminded me how hard I worked at the camp, and how I was letting it all go to waste.

I loved my grandmother very much. She loved me. She had her own weight issues, her own body image issues…I know this affected her and how she treated me. I know it affected her and affected my mother as well. That doesn’t mean what she did to me all those years wasn’t painful and damaging. As an adult, I understand where it came from for her. I’m working hard to separate her as the woman who loved me from her terrible behaviors toward me. I’m trying to remember that I’m NOT damaged. I am whole and I am okay.

My grandmother is only part of the reason that I never feel like I’m enough. Good enough. A good enough daughter. A good enough sister. A good enough wife. A good enough friend. I work ultra-hard, go the extra mile, do all the little things and the big things…and yet even when people are appreciative, I worry that it wasn’t enough. That I wasn’t enough.

My mother had three boys. All she wanted at that point was a little girl. A daughter, who she could dress in lace and ruffles, who would wear sweet pink dresses and play with baby dolls, who would love her tiny tea set and be the epitome of every dainty little girl. I was none of that. I hate lace and ruffles–they made me itch–and I wasn’t overly fond of pink. I hated dresses. I never once picked up a baby doll and I totally ignored the expensive and lovely tea set that I’m told my uncle bought for me at my mother’s urging. I played with the boys’ toys, with the boys themselves as often as I could work my way into their play-time, and I wore pants and tee shirts. And I was far from the dainty little girl she had hoped for. Very very often, my mother would speak of me, and then tell people all those things…I waited so long for a baby girl, I wanted to dress her in lace and ruffles, I wanted to see her play with baby dolls and tea sets. She never wanted any of those things… Over and over my mother would tell people of my failures. My mother loves me and I love her. If you read any of my blog posts, you can’t miss that. We’re amazing friends. I’m in awe of her. I’m deathly afraid of the day I will lose her. AND she made me feel like I wasn’t enough while I was growing up. I wasn’t who she had expected me to be.

I try so hard to be enough. I’ve been bullied and abused and put down for who I was. I only ever wanted to be loved.

As we were talking about my grandmother–and in part about my mom–V asked me to picture myself as a child. I could immediately remember my little bedroom. The walls were painted a pepto bismal pink, my white iron daybed mattress covered in strawberry shortcake sheets (which were in part pink), the white dressers and desk that had once belonged to my mother, the deep cranberry wool carpeting that my grandparents had passed down to me from a previous house. The full length mirror on the back of my door. The tiny little black and white television on my dresser, under the shelves that held the dolls my grandparents brought for me from every trip they took out of the country (I had never asked for dolls, they just bought them for me). The window air conditioner an uncle gave us for my bedroom. V asked me what that little girl was thinking, and I blurted out she just wants to be loved….she doesn’t want to be alone.

In previous sessions with T, I didn’t really understand talking to the little girl that I used to be. I’m not sure why this time it was more accessible. Maybe because of the revelations I had about my grandmother and my mother. The thing is, I don’t know how to make it better for that little girl. I was alone. I felt unloved. I’m not alone as an adult. I have a wonderful relationship with my mother, I have a good relationship with my father and my brothers. My husband loves me very much. I have a very good friend whom I’ve known since second grade. And yet I still feel not good enough. I just want to feel good enough.

I don’t know what’s going to come next. I was supposed to see V again next week but I’ve canceled the appointment due to my mother’s health. That doesn’t mean I’m not thinking about all of this when I have free brain time, but I’ve been pretty occupied with my mother’s appointments, her care, and taking care of her personal and business issues. I have another appointment scheduled with V in a couple of weeks. If I can manage the appointment, I will. In the meantime, I’m still seeing T, so maybe I’ll be able to address some of these thoughts with her. We’ll have to see how it goes, considering everything else happening at the moment.

 

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And so I fly… (part 2)

I flew to Chicago for my niece’s wedding (I forgot to note that my Dad picked up a Bailey’s and cream for me at the open bar…I rarely drink, but I finished the small glass of it, hoping it might help me chill a little before the flight). It was a very pretty wedding, but we had responsibilities at home and so didn’t want to have to stay overnight away from home. So like idiots, we decided to fly in the morning of the wedding (1 1/2 to 2 hour flight) and then turn around and fly home that night. The wedding was at 3pm. Our flight home was at 9:30pm, but remember you’re supposed to be at the airport two hours early to make it through security and to your gate in time to board. Ye-ah. Considering our first foray had a one hour wait in line for security screening, I’m totally understanding the 2 hour timing. I was sure, though, that there wouldn’t be much of a line at seven at night. No shock that I was wrong…it took about forty minutes to get through security this time. And guess what? This time they made me get back into the xray thingy a second time. Then the TSA agent made a face and while I was IN the xray thingy, she made me pull my pants all the way up “to your natural waist, hon”. Um, okay. Problem is, the pants I decided to travel in are my slouchy pants, but I did as I was told. She looked at me again and said I had to pull the pants waaaaaaaaay up so that the crotch wasn’t hanging down away from, well, my crotch. So I yanked my pants up as high as they could go, but she wanted me to also spread my legs farther apart. Which I did. When I came out of the xray machine, she made another face and said she was going to have to pat down my waist and my legs, to which I said, “Okie dokie.” Meanwhile, Hub, who was behind me, scooted through the xray and was putting on his shoes while I was being patted down. Might I mention that his pants were also baggy? But they were jeans, so maybe that’s different? Or they figure men need more room in their crotchal area than women, and thus I was some sort of threat with my saggy crotched pants? Dunno, but I did what I was told. They also wiped my hands with a piece of something-or-other and threw it into a machine. Came back clean and we were waved on our way. So, that was an experience. (Did I also forget to mention that during our flight out, we saw a female TSA agent patting down a lady who was wearing spandex? Who would have been unable to hide anything if she had wanted to? Because I could see the brand name of her underwear through her spandex? –also, said lady was very trim, so don’t think that was fat-bashing, it was just a spandex thing…and a thing about how TSA could possibly think she was hiding something from them…)

Once again, the gate we were going to was at the farthest end of the airport, literally. So we were off on our hike to the gate, where we starting hearing announcements almost immediately that our flight was moved to another gate. The actual last gate in the terminal. Which was already crowded with people, as it was technically two gates in the same area. So we had to stand for twenty-five minutes until they were ready to start boarding because the chairs in the area were all occupied, either with people or, rudely, with their STUFF. And here’s where it starting getting really bad for me. First of all, I was tired and in pain from the first flight, all the walking in the airport, and the hard chairs at the wedding. Then, I started thinking about how we were sort of crammed in like cattle, and that the airline we were taking home was Spirit, which is a discount airline. I bought these tickets because they were the latest flight out we could get (technically it’s considered a red-eye because we were flying “overnight” due to the time change), and because it was a full-size airplane (versus American Eagle which uses a very small-ish plane). But at the gate I was thinking maybe Spirit was flying old planes that no one else wanted. Our plane was already at the gate and I could see it through the window. It arrived and was deplaning as we were told our gate was moved to that gate. And we were scheduled to board only half an hour later…how do they clean a whole plane in half an hour? How do the pilots get to rest in between flights? I saw the flight crew leave with their bags, but then I watched the two pilots get off the plane and go retrieve food for their dinners. As they came back with food, I said to Hub “two hands on the wheel Mr. Pilot-man!” out of jest, but it freaked me out a bit. Were we flying old creaking airplanes with crew who couldn’t make it onto one of the big airlines?

Listen, for those who don’t have anxiety, you have to understand that those of us who do, our thoughts aren’t always rational. I don’t know those pilots, I don’t know the airplanes, I don’t know shit about Spirit except that it’s “no-frills”. I have no clue if their training is different or requires less air-time for the pilots, or if the planes are made specifically as no-frills for Spirit or if, indeed, they are just older planes. But these are the things my brain was telling me at the time.

This time I had purchased the “big seats” in the emergency exit row because they were only a few dollars more when we booked. And I thought on the flight home it would be worth it since we’d both be tired and stressed. It was a good thing because Spirit’s seats are even closer together and smaller than United, which also pushed me further into the “rickety old airplane” theory. We boarded in the second zone/group and found our seats pretty quickly. Just a minute or two later, our seatmate (again the window seat) showed up, and I was relieved to note he was pretty slender, though tall. We let him into his seat, then tried to get settled ourselves. We had tons of legroom and just a little larger set of seats than we’d had on United, but we were also responsible for the emergency exit in the case of, well, an emergency. The seats were old looking, and everything around us looked kind of sparce and ghetto. Nothing seemed…finished. Like the plane was from back before they made things…pretty. It sucked, ya’ll. It really revved up my anxiety because it made me feel like we were flying secondhand airplanes. And to make things even more fantastic, as we were finishing up with boarding, two girls stumbled onto the plane, one of them making loud, drunken apologies on how they were running late. Then they proceeded to take the seats–you guessed it–right in front of us, one on each side of the aisle. Oh jeez. They were probably just barely into their twenties, drunk and acting stupid (one more than the other), and being really loud. They were punching each other back and forth across the aisle. Then the flight crew came to do their safety speech, and lucky them, the steward had to do his speech and demo right there next to the drunk girl. I’m pretty sure one or two of the times he bent/knelt down to pick something up off the floor, the drunk girl touched him inappropriately because he sort of started and then glared at her. Then another steward came to talk to her while the safety demo was still going on. After the safety demo, the steward put the stuff away and went back to the front of the plane briefly, until the girls starting acting up again, then he came back to quietly chastise them and warn them about further disturbances. The drunk girl started making a fuss and he shut her down, very quietly and very politely. She asked for her neck pillow from the overhead compartment, which he nicely retrieved, then within minutes she was asleep, flopped about like a doll.

I hated her. I hated the guy sleeping next to me. I hated the others asleep on the late-night flight. It sucked because I was really upset and unable to even sit back and relax, and there they were sleeping! So we head off to taxi along the runway and I plaster myself to Hub’s side again, while he’s watching an episode of Firefly he’d downloaded (to distract himself…poor Hub, being upset himself and having to deal with me…*sigh*). I had my headphones on again, but this time the plane was even louder and I had trouble drowning any of the noise out. As we took off, I felt like the plane was rattling around me, again like it wasn’t made very well or was old and on it’s way to tearing to pieces. I pressed my face against Hub’s shoulder and I cried. It was so hard to maintain myself at that point. I wasn’t having a panic attack, at least not in the way I know them, as my heart was very steady and I didn’t feel that overriding sense of doom and despair…I just felt tired and overstressed and I just wanted to be home. I didn’t want to have to fight my way through the discomfort of the turbulence or the feeling of the airplane dipping and turning, or ascending or descending. I just wanted to be done. I wanted the day to be over. I wanted to not be so tense or feel so vigilant. Hub had spent the entire day watching the clock, checking his phone nearly every twenty minutes (he told me) to make sure we were on schedule wherever we were. He told me as we were heading home from the airport that it made him feel in control. We both knew that was a crock.

The flight continued, as did the extraordinary noise (how did those people sleep through all that?). Twenty minutes prior to descent, the pilot came on with the announcement that we were approaching our home location. I spent the next twenty minutes clutched up against Hub, vacillating between crying quietly and telling myself that we HAD to go through the turbulence and descent in order to be done with all of this. Descent seemed to take forever, and although I thought I was more prepared for landing, this one was soooooooooooo loud and bumpy, it felt like the brakes were screaming the whole time. We finally taxied around to the gate and lined up to get off the plane. I was exhausted, beyond what I’ve felt in a long time, because it was all wrapped up in the physical and the mental and the relief of it all being over.

Only later did I realize that when I’d done some searching on the best place to sit on a plane before the trip, all the articles said to sit toward the back where there is less noise and less feeling of movement. I doubt highly about the movement, but from these two flights back-to-back, I do realize that it was quieter in the back of the plane. I didn’t hear them testing the flaps on the plane, I didn’t hear and feel the landing gear going up and down, and in general the engine noise was lessened in the back of the plane. Also, in the dark on the way home as we were approaching descent, I glanced out an open-shaded window and saw what looked like lightning, which freaked me out. I suspect it was the lights on the wings blinking, but that’s not something you see from the back of the plane, either. The drawback is, there are no seats in the back of the plane with extra legroom (that I’m aware of), so you get screwed on that. Do you deal with the extra noise and such and get larger seats with better legroom, or do you squish into the back seats for the reduction in noises? I dunno, but I will note that my flight out (back seats, smaller, less legroom) was an easier flight for me than the one coming home with the bigger seats. Then again, I was exhausted on the way home, and probably a little over-tired from the alcohol I’d consumed (which I literally never drink, ever, mostly because I don’t enjoy booze and the stuff that I do like–Kahlua and/or Bailey’s–make me so sleepy that I’m ready for a nap immediately upon finishing what is in the first glass I’ve had).

When we got off the plane, it was like the airport was deserted. We had to make the long walk to the baggage area to try to find the shuttle back to the car. Then it was a ride from the airport to the parking garage once the shuttle picked us up. And then from there, we were off for home, where our pups were waiting for us with much glee. We were very fortunate that a good friend of mine hung out with the dogs all day, while my parents’ hired a pet sitter to come watch their dog for the day we were gone. At one a.m., we picked up my parents’ dog and brought her to our house to spend the final night with us until my parents arrived back home. We were all sacked out by 1:30am, none of us really wanting to get up just a few short hours later to start the week.

By the time this posts, we’ll have already taken Le Moo in for surgery to have a thing removed from her eyelid, and my mother will have had her second infusion of the new medication to shrink her cancer. Later in the week, if needed after Butthead’s xrays (same time as Le Moo’s surgery), we’ll be back for another session of water ballet!

I am so glad this trip is over. I’m thrilled for my niece, and I hope she has a happy and love-filled life. But after this, she can come visit me.

 

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