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Finding connections

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

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

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

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

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

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


 

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

 

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Bactrim blues

So I’ve taken six pills so far for what my doctor diagnosed as a sinus infection.  I wanted to make note of what has been happening with the bactrim, at least for my future reference. Here’s what my historical experience prepared me for:

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.

I’m definitely getting a lot of heartburn/acid reflux. My appetite is nil and the nausea is there for sure. My stomach hurts almost all the time, but that could also be from the acid reflux/heartburn. What is also a bit distressing is that last night before dinner (after the 4th pill at 9:30am that morning), I had a really bad hot flush on my face and ear, and I had anxiety. I’m not sure if the anxiety came from the hot flush or from the ABs. So I took another pill this morning at about the same time as yesterday…and tonight the hot flush started again before dinner. I didn’t even wait this time, I just got a cold pack and put it on my face until I was pretty well frozen. I didn’t get the anxiety, but I also stopped the hot flush early on, so maybe I stopped the anxiety before it started.

There’s no discernible change in the smell issue, yet. I’ve been trying to use different essential oils to distract myself from the smell (I just realized I had some good oils downstairs I could use…brown sugar and vanilla!), but it doesn’t last long.

Last night we invited my father over for dinner since my brother (the one that lives with him) is out of town for several days. Then tonight we went out for burgers with him and my other brother. Tomorrow Dad’s going to the grocery store with us in the morning, basically because he’s tired of being stuck in the house alone. He and I talked about how hard it is to be alone in the house all the time (while his house-mate is out of town), and I told him how concerned I am about being alone when Hub goes away. I told him I might end up sleeping there at night and he said if I did then they would be able to help me with the dogs in the early morning hours. I said I’d let him know. I’ve been going out for walks every day and when I get to his house, I call him to tell him to send his dog into the yard with us…sometimes he comes out to chat at that point. It’s hard because I used to do this to go hang out with Mom…and it’s not as easy to find things to talk about with Dad all the time. But I’m trying t keep up with the walking outside, so if he wants to chat with me he’ll have the opportunity.

I’m really tired of feeling so crappy. I want to regain my energy. I want to move forward.

 

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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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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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No Joy Whatsoever

So Saturday the 4th in the evening, I got hit with a wave of exhaustion and wooziness and then weakness that left me feeling like I wasn’t able to stand long enough to even shower. Sunday morning I thought I was okay, but by 2ish, I was feeling the same again. This was more than just feeling tired, it was long past tired. It was close to how I felt the day after my surgery. Exhaustion, severe and overwhelming. Weakness like I had no muscles left after a 100 mile walk in one day. It was beyond beyond.

Monday morning I called my doctor’s office but no joy for an appointment, so Hub and I went off to a local walk-in/urgent care clinic not far from our local hospital. After 2 1/2 hours of waiting, ekg, bloodwork and pee, the doctor (who was wearing a face mask and coughing phlegmy) told me she found nothing in my tests but couldn’t rule out a stroke so I needed to go to the ER.

At 2pm, we checked into the ER and spent the next 5 1/2 hours being pushed from triage, Ekg (again), bloodwork (again), pee (again), the “main” waiting area, then to a small, isolated, windowless room with several other couples and individuals (some of which were contagious based on the fact that two of them were wearing masks–both of which then took off their masks while they were in there with us). This cramped little space is where we sat for another 90 minutes while they gave me IV fluids, while the others around us also sat getting IV treatments…along with two older people slouched over in wheelchairs (where there was no space for them) and another person slept on a chair. They finally found us a room in the ER, where the PA who saw us did a neurology physical test, said probably no stroke and they don’t want to do a CT without a real reason. So she did thyroid test (again) on the bloodwork which came back normal…as did all my blood work from both walk-in clinic and the ER lab. So she sent us home saying I should see a neurologist as a follow-up.

My doctor’s office called the next day and said, “come in so we can talk about what’s going on”, so I did on Thursday. Part way through the appointment (at 3pm), the doctor said “you’re having shortness of breath and leg pain, you need a lung ct and leg ultrasound to rule out DVT and lung blood clot”. Luckily for us, the nurse was able to hustle us an appointment at a local radiology office instead of sending us back to the ER again. Unfortunately, the nurse at my doctor’s office made an appointment for us at the location that was forty minutes away in the “city” versus the one that was ten minutes away and the same distance from our house. And she actually only made the CT appointment, not the leg ultrasound appointment. We were lucky that the person managing the location we went to fit us in for both tests within an hour…and the techs were both very nice about the situation.

The radiology place won’t tell us anything, they just fit us in for both test and sent us home at 4:30. I called my doctor at her office, who said she would call from home and get test results (bcuz her office closes at 5pm) and call me once she has them. She called at about 5:50 to say both tests were normal, for me to pick up in the inhaler she prescribed because my chest had sounded “tight” and she was thinking I might have asthma…and then I should rest, hydrate, and get back in touch if I get worse.

I’m at home, still feeling crappy and tired and weak. I’ve been eating normally, trying to drink as normal as possible, and trying to rest. Because of how badly I was feeling, I had a shitty panic attack Sunday afternoon (before the walk-in/ER visit) that I kept trying to get out of but it just kept recycling when I thought it was over.

Ten days after my appointment with my primary, I went back for a follow-up because I wasn’t feeling much better and the inhaler was giving me leg cramps. The doctor listened to my lungs and pronounced them clear, said I could stop the inhaler, and that I should go home and hydrate and rest some more. She said there’s a virus going around and that it wasn’t unusual for the main complaint to be exhaustion. And in fact, she was leaving shortly after my appointment because she was having the same symptoms I was (although she was also getting a little cough).

So I’m still home, still hydrating, still trying to eat normally, and I’m resting so much I’m tired of resting. Sadly, I’m still feeling really overtired and I have no energy for anything. It’s been a struggle for me to keep up with taking the dogs out repeatedly during the day (and I can’t leave Butthead outside alone because she eats stuff in the grass and then gets sick), and I’ve hardly been able to do more than one or two loads of laundry in a day. Going to the grocery store or to my therapy appointments leave me exhausted. Tomorrow I go for massage  therapy and I have no idea how I’m going to feel afterwards.

And through all of February, my pain has been ramped up. I can’t seem to get around it. My muscles all hurt. My stomach hurts. I’m having lots of trouble sleeping. I haven’t crocheted since January. I haven’t done much of anything since this all started…

Tonight…well, tonight Hub goes for his sleep study to see if he has sleep apnea. That means I get to go out into the dark and the cold tonight to let the dogs out before bedtime. It also means I will be sleeping alone tonight. Not a happy me!

Did I mention that Hub’s job is transitioning now that a bigger corporation bought his smaller employer? Did I also mention (can’t remember if I have) that they’re screwing around and even though we technically have health insurance with the new company we won’t actually have cards until some unknown time in mid-to-late-to-end-of March? So if we get sick or need the ER or to see a doctor or to GET OUR MAMMOGRAM we can’t. Or we pay on our own and maybe the insurance company might reimburse us later for some small portion of the amounts we paid? (*sob*) Talk about anxiety…

 

 

 

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A new character emerges

As if my life were a book. Ironic since I used to write those.

I’ve been hiding in plain sight recently. My world has seemed to orbit around my food issues (another blog) and my father. And then the election. Oh God, the election. Please, another day.

Today is for my dad. My father was born eleven months after my mom, so he is almost a year younger than she. And yet, he has always seemed to be older than her, and his health has not been the greatest. He–like me and others in my family–has been overweight all of his adult life. He never had a good diet, he never exercised regularly, and for as long as my mother has known him, he has smoked a pipe. He’s been through cigarette phases and on occasion would enjoy himself a cigar, but his vise is really his pipe. As kids we had to live with it, though my mother always hated it and the smell of it makes me physically sick. When my parents had a house built in the late eighties, my  mother told my father he was no longer allowed to smoke in the house. He had to sit in the garage or on the porch he insisted the house have. He was only allowed to smoke in HIS vehicle and then only if he was alone. When they had their current house built, the rules were the same. Still now, on days when the wind is blowing just right and I’m outside, I can smell his pipe smoke coming from his garage. I still hate it. He has a smoker’s cough, a wheeze when he breathes, and his teeth are in terrible condition. His skin is bad, he has zero taste buds and absolutely no sense of smell.

In his sixties, my father was diagnosed with type 2 diabetes, high blood pressure, and high cholesterol. He didn’t care and he didn’t take medication and he didn’t change any of his habits. To this day, he doesn’t stay on medication. He takes it randomly and is convinced that the pharmaceutical companies are all out to make a buck and none of the medications do anything. He also randomly goes on and off all kinds of herbal “medications” with the expectation that they will solve all his issues. And again, has no consistency with them. He reads every alternative medical article and pamphlet he can and spouts his knowledge to whoever will listen.

Now, he is not really able to manage his sugar levels, despite attempting to go back onto his meds “consistently”. He will randomly announce he is off carbs and only eating protein, then not follow through. He will randomly announce he is off meat and only eating cheese and fish and bread. And pasta. He won’t follow through on any of that, either. And he has diabetic neuropathy in his feet. Very very bad neuropathy. He is in pain every day, often severe, and has been for at least four or five years. One time he told me he figured losing a foot was bound to happen to him. He was resigned to it. It hasn’t happened yet, but he’s not very actively doing much to keep that at bay.

My father retired from his job in the fall of 2003. Since that time, his life’s passion has been to read and smoke in his garage. When my mother got sick, he took care of her. His life then revolved around doctor’s appointments and combing through medical or alternative medical articles on the web. When Mom died, he crawled into his book and his pipe and refused to come out. Randomly he would tell me that he didn’t want to leave the house anymore. Randomly he would tell one of my brothers that he was crying “a lot”. So when my father had a medical issue crop up and he made an appointment to see his doctor, I went with him. I didn’t ask, I just showed up at his car the morning of his appointment about ten minutes before he was due to leave. When we saw his doctor, he told her that he was crying a lot and really didn’t want to leave the house. She asked him some questions and they talked–and he cried–and they talked more. And she asked him to try Lexapro. And she warned him it would take 4-6 weeks before he might feel any change, but that it would help him manage the depression until he was able to manage it himself. Or until it “lifted”, since she felt it was due to my  mother’s death. He promised her he would try it, and we went home with the pills.

Two weeks after starting the pills, he told us that he was feeling a bit better. He was doing more and talking more and crying less. Three weeks after starting the pills, he abruptly quit them without telling anyone, including his doctor. When I found out, I asked why and he told me he didn’t like the way he felt on them. But he couldn’t explain that any further. I asked him to alert his doctor–which he did by email–and he said if he felt like the depression was a problem, he would go back on the pills. Which we all knew was a damn lie.

It’s been about three months since he took the pills. Roughly two months since he stopped. He has admitted to me since then that he feels responsible for my mother’s death (which is not rational), and he told my brother (I learned later) that he stopped taking the pills because it made the feeling of loss and pain go away. And he wanted to feel the pain of my mother’s death. He was punishing himself for her death. And more recently, he has told me that he isn’t enjoying his books anymore. The one place he was able to hide and pass the hours every day. So when he had another health issue come up, I did the repeat dance and showed up at his car the morning of his appointment. And in the doctor’s office, after he went through the current medical issue, I brought up the depression and his loss of enjoyment of his books.

The doctor asked him to try another medication, which he refused. I didn’t know at this point why he stopped the meds and he refused to tell the doctor, only saying he didn’t like how he felt on it and “didn’t know” what that meant. After explaining to my dad about the chemicals in his brain being responsible for the depression, the doctor suggested he go see a mental health professional, possibly one that would be able to help him find a better medication for him. He said he’d think about it–after he cried and I cried–then refused to discuss it any further. My brother and I confronted him the next night about doing something, seeing someone, SOMETHING, and he refused to talk to us. He later told another of my brothers that “nothing is wrong with my brain!” in response to conversation about the depression being related to his brain chemistry.

I am feeling so helpless. Although his cognition isn’t great–which he has admitted–he is still in his right mind. We can’t force him to do anything. But I can’t give up and let him just spend his last years rotting away. I’m not asking him to be someone he’s not, but I hate that he has lost even his love of his books. Today I made an appointment to see our family Rabbi so that my brother and I can go speak to him. He’s been a part of our lives for over 45 years, and he’s a trained counselor. I hope he might have some suggestions, and/or consider helping us talk to my father.

I knew my mother’s death would be hard on my father. I had no concept of what that really meant IRL.

 

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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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