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Category Archives: angry

His new job update

So Hub went to his orientation today for his new job. And those…the new employer doesn’t allow you to start on their health insurance until the first of the month following your start date. For Hub that means we won’t be covered on their insurance until May 1st. What the hell is that? I’ve never heard that kind of thing before. So now we have to pay through the nose for Cobra from his old job for a month to make sure we are insured for the month.

Also, their information on their mental health coverage is written up weird, so I have no idea whether or not my therapist is going to be covered. Or if I have to have pre-authorization for my mental health coverage, which I’ve NEVER had to do before. Are they going to put a cap on how often they’ll pay for me to see T? I hate this shit, I really do. I just don’t have the energy or patience to deal with this stuff right now. Really, I don’t.

And post-orientation, Hub has no idea what he’s supposed to be doing tomorrow or who he’s reporting to. What kind of orientation is that?

Ugh. FRUSTRATED.

 

 
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Posted by on April 3, 2017 in angry, anxiety, hub, insurance

 

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The 1st of March

It’s the first of March. It’s the first day of the month during which I lost my mother last year to her cancer.

Yesterday I went to see my massage therapist. It was a long appointment and the therapist worked hard on my trigger points. With all the pain I’ve been in, she really had to do a lot of work on my upper body. Arms, upper chest, shoulders, neck, my entire back, my glutes. I came home feeling exhausted and so weary. I probably shouldn’t have driven home myself but I made it successfully. I had the air conditioning in the car full blast to keep me alert, but I think once I turned into my driveway my brain sort of gave up. I drove up the driveway but…when I turned my car toward the garage so I could make a K turn to park in my usual spot, I went just a little too far. And I hit the garage door. Again. I wasn’t going fast and I didn’t hit hard, but I pushed the already damaged door in just enough to break the bits on the inside that hold the panels to the rollers. I did this years ago (like 3 years?), but at that point I had backed into the garage door and the molding at the edge of the door. I broke my tail light and dented the garage door. The repair guys came out then and just repaired the stuff inside and said it’d be okay. Well, it WAS okay until I hit it again yesterday. The guys came out today and said the door parts were damaged beyond repair and we’d likely have to replace two of the panels. They are supposed to call tomorrow or Friday to let us know the cost. I don’t know what happened…and I can’t believe I hit the garage door a second time. I guess I’m thankful that this time I didn’t damage my SUV and that Hub couldn’t have cared less that I hit the garage. He was more upset that I was so upset with myself. We can’t use the garage until we get the repairs done, which doesn’t really affect me because I don’t park in the garage but it means Hub can’t put his car in the garage. Again, he’s totally not upset about the damage, but I am.

So I haven’t been sleeping much at all for the last six weeks or so because of all the pain I’ve been in. I slept about an hour or two (fitfully) Monday overnight to Tuesday because Hub went to an overnight sleep study at our local hospital. Tuesday I had my massage therapy, and Tuesday night I was in extra pain from the trigger points she worked on. Today, Hub worked from home and I spent most of the day on the couch trying to find a comfortable position. I’m not sure I’ve tried to describe this before, but when my massage therapist works on trigger points, I am often left with a feeling of horrible bruising (without any bruises) and like I am resting on golf balls that are pressing right on the bruised points. All my body weight right on those bruised spots with hard golf balls pressing right into those spots. It’s painful. Even moving is painful. The best thing I can do is not move. Find a position that doesn’t put too much pressure on any of those spots (and they are numerous and spread throughout my back, arms, shoulders, and butt) and then don’t move. So I was stretched out on the couch while Hub was working nearby and everything is hurting…and I start crying. I’m exhausted and in so much pain and I just feel overwhelmed.

And I’m sad. I miss my mother so much every single day. And I know now that March was the beginning of the end for my mother last year. And I’m thinking of the things we were trying to do with Mom last March…and how fast it went in the end. The tears just came and I let them. I feel so sad. And lost. I can’t believe it’s been almost a year. I can’t believe how much time has passed without her. How life has gone on for so long without her. It hurts. Physically and emotionally and mentally I am just exhausted and sad.

 

 

 

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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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Birthdays and grief

My mother’s birthday was a few days before the holidays. As one of my brothers said to me, “I’m sure it’s not creeping up on you, either…” And it wasn’t. T thinks that a lot of my pain and anxiety were around the colonoscopy without my mother being there, and because of my mother’s birthday, and because of the holidays without her.

Yeah, I knew her birthday was coming. I knew it was going to be bad. I also knew I had somewhat of a plan for the day. Before Mom got sick, when she was still crocheting, she hooked up a bunch of preemie hats for our local hospital’s NICU. At the time, it wasn’t a lot of hats, so we kept saying we were holding off before taking them in. After Mom passed, I took all of the small amounts of yarn I had and crocheted more tiny hats. Then I put them all into a bag and left them in my library. Because I knew what I wanted to do.

On Mom’s birthday, I woke up and got dressed. And I called my father to see how he was. He said he was just going to call me because he was going to the cemetery and he wanted to know if I wanted to go. I didn’t really, but I didn’t want him to go alone. So instead of answering him directly, I said if he would take me up to the hospital to drop off the preemie hats, I would go with him to the cemetery. He said okay, so we left about ten minutes later.

At the hospital–where my father’s sister (my aunt) was admitted and stayed for several days, and where my mother went for her lymphedema wraps–I left Dad in the parking lot and I went inside. At the main desk, they checked me in and directed me to the NICU. As I made my way down the hall, I saw someone walk into the elevator, so I hurried to join her so I could save some time waiting for another elevator. Inside, the woman standing across from me smiled, then looked at the bag in my arms and her smile got wider. She asked me if I was bringing hats to the NICU. I said yes, and her eyes seemed to sparkle. She was heading for the NICU herself…she had twin girls who had been born before Thanksgiving–when they were due after Christmas. I said congratulations and I hoped they were doing well, which she said they were. And she told me, “They brought me to see the girls for the first time, and there they were in hand-knitted hats, and it just made my heart skip a beat. That someone out there did that for me and for them, complete strangers!” Her smile was so big.

When the elevator doors opened, I walked with her down the hall and into the NICU waiting area. I wished her luck and she disappeared behind a door that the nurse unlocked for her. I approached the nurse, who was behind a glass windowed reception area, and I put my bag of 40 hats on the counter in between us. And I announced that I was there to drop off crocheted hats for the babies. In all sizes, all colors, all different types of yarns. The nurse smiled and took the bag, then started going through the hats. She oohed and ahhed over some of them, and even rubbed a few on her cheek and said how soft they were. She told me how wonderful if it was to have them, and wanted to know “how many women are there in your group that made these?” I laughed and said it was just my mom and me. The sweet woman said, “oh my goodness, please give your mom a hug for me!”

I basically nodded and smiled, gave a wave, and left the unit for the safety of the hallway. It was hard. I tried not to cry as I made my way back through the hospital and out to the car where my father was waiting. Fortunately, he was busy navigating the parking lot and trying to figure out the best way to get to the cemetery, so our conversation was pretty sparse.

When we were done and I was home, I cried. I cried because those were the last hats I had from her. I cried because I missed her. I cried because I hated where I was in my life without her.

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When my mom was going through chemo, I made her a bunch of hats for her to wear after she lost her hair. Years ago, probably six or seven years, before I was crocheting, she was supposed to crochet me an open-weave sweater to wear over a tank top. She never got to it, for various reasons. I don’t even know what happened to the yarn we picked out. She crocheted me a shawl for my brother’s wedding, and added crocheted sleeves to an evening gown for my cousin’s black-tie wedding. So I really have nothing I can wear that she made for me. I wish I did. The last thing she crocheted was a lap blanket that she was expecting to donate, but a few days after she died, I took it. I wrapped it up in tissue paper and put it into a plastic bag that a set of sheets came in, and I put it away in my guest room. It’s in a drawer in my grandparents’ dresser. It’s ugly as sin color-wise, but I can’t bear to part with it. I also have a ruffled ball that was supposed to be for a baby that was a test-project. It’s on a shelf in my bookcase hidden behind some doors with the perfume that I took from her bathroom drawers a few months after she died.

I honored my  mom as best I could on her birthday. My birthday is coming up soon. Hub usually cooks me a special dinner and he’s been asking me what I want to eat. I kept putting him off, because I honestly do not want to celebrate my birthday. I finally told him I didn’t want anything special on my birthday because I didn’t want to have my birthday. I don’t even want it to be acknowledged, because it’s just another reminder to me that she isn’t here with me. Last year she was in brain radiation on my birthday…she was just getting over the symptoms of the brain mets. We were dealing with the lawyer trying to get my parents’ trusts all finalized and stuff.

Last year, five days before my birthday, I had to call an ambulance at 11pm for Hub because he had an episode of paroxysmal supraventricular tachycardia (PSVT) where his heart rate was sustained up around 225 or 250bpm. They had to stop his heart twice with medication to get it reset. We went to his follow-up appointment with his cardiologist on my birthday.

Right now, I’m in pain. My arms and back and neck and shoulders hurt. I have headaches on an almost daily basis for multiple hours at a time. My hips hurt when I try to sleep. I still have nausea. I still have jaw pain. I still have anxiety over the jaw pain, though it’s not as persistent as it was in the past few weeks. I’m not sleeping much and I’m not crocheting because I hurt too much.

I don’t want to celebrate. Right now I just want the days to be days, so I don’t have to be so sad.

 

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I don’t wanna (stomps foot)

This morning my brother and sister-in-law flew in. Tonight we had dinner at our house, with Hub and I cooking breakfast for dinner. My father came over, one of my brothers who lives locally came over, and the my SIL and brother from out of town. It was kind of a last minute get-together, but that’s fine. I didn’t want to go out to dinner again (Hub and I took Dad out last night), so we volunteered to cook for everyone tonight.

Tomorrow, we go to the cemetery to have a very small and short ceremony to reveal Mom’s headstone.

Everyone left an hour ago and since then, I’ve been feeling…not ready for tomorrow. There’s absolutely nothing I have to do for the ceremony. We’ve already bought and prepared some food for afterward at my parents’ house, and there’s nothing left to do tonight. I don’t even know if the phrase “not ready” is appropriate.

I don’t wanna go tomorrow. I just don’t wanna.

I’ve known for weeks this was coming up. And as this last week has approached, I’ve felt more and more pain in my body. And more and more angry. And more and more upset. And amazingly enough, I’ve been sleeping even less. No matter how I try to fall asleep, or stay asleep, or get comfortable, or turn out the lights early, or try to linger in bed longer…I’m even more tired.

I’ve talked to T about some of this. She gave me some insights on William Worden’s “grief tasks” which are a slightly different theory from the five stages of grief (1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance). The four grief tasks are:
1. Accept the reality of the loss
2. Work through the pain of grief
3. Adjust to an environment in which the deceased is missing
4. Find an enduring connection with the deceased while embarking on a new life

These tasks are supposed to be wrapped up in each other, so that even while you are working one, you are likely working others at the same time.

Right now, all I know is that I don’t want to go tomorrow. I don’t want to be wrapped up in sadness. I want to talk about Mom and about the good parts of her life. I don’t want to stand there and focus on the grief of it all.

No one really wants to talk about her. I want to remember her life, not languish in her sickness and her death. There was so much more to her than her last two  years. So much more to her than cancer. So much more to her than metastases. So much more to her than her death. She had a life! A long and amazing life. A life full of love and travel and learning and joy and … life.

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Tomorrow will come and go. Another day marked off our calendar, another task completed (the installation of the headstone and the “reveal”)…and still she is gone.

I used to write poetry, just like I used to write fiction books. I tried to write a poem for tomorrow but came up empty. The words don’t come anymore. There’s just this emptiness and the fervent wish to express myself somehow. And then the inability to do so.

 

 

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These days (on God and faith)

There are days I wake up feeling mad at God. And days I go to sleep feeling mad at God.

I’m not overly religious, but I was raised with religion. I follow many of our traditions but I do not attend services every week. I did not grow up attending services every week. My life now as an adult is pretty close to my life growing up. My family’s traditions and habits stayed with me through the years to now. When my grandfather died, my mother started taking my grandmother to weekly services because my grandmother found comfort in the ritual. And I think it gave my mother special time with her mother. When my grandmother passed away, my mother continued attending weekly services because I think it became comfort to her. She generally attended the services with my father, who only went because she did. Sometimes she went alone, but that was pretty rare.

I do not find comfort in weekly services, so I never got into that tradition. I found comfort in my family. That family is in chaos without my mother.

I’m angry at God for taking my mother away. I’m angry at God for not giving me the ability to heal her. I’m angry at God for leaving me with this emptiness, this pain, this loneliness. I’m angry at God for putting my father through his own personal hell.

I’ve had previous tiffs with God. When I first got sick, I was so involved with being sick that I didn’t have time to think about God’s part in it. When I got sick again–more on top of the first illness–I was tired and I wanted to just give up. I didn’t think about why I was sick, only that I was. But as the years went on and my chronic pain and other chronic issues continued, I got mad at God. Why was He letting me be in pain all the time? Why wasn’t He helping the doctors figure out what was wrong with me and how to help me?

Why did He give my grandfather leukemia? Why did He let my grandfather suffer? And why did He let my grandfather die at only 82 years old? Why did He give my grandmother an eye disease that left her mostly blind? And then the stroke? And the dementia? Why did He let her linger year after year, lost in her own mind, needing others to care for her physical body because she was no longer able? My uncle, my aunt…on and on.

Why the cancer released on my mother’s body? Why did it have to be so aggressive? Why so fast, so hard? Why did it have to ruin her body and her mind at the end? Why did He have to take her away from us?

I know a lot of people who find comfort in their faith. Some give all their problems to God and accept whatever the answer is. I don’t know how to do that. I don’t know how to get past the anger. I’m not saying I spend my days raging at God, because I don’t. But there are days when I sure want to rage and scream and ask WHY WHY WHY. How do I have trust in God and in a universe that has stolen my mother from me?

I watch commercials and I’m angry at kids with their mothers. When I’m out in stores I silently scream at kids with their mothers, wanting them to relish their time together because it won’t last. I’m jealous of Hub, who has his mother in his life. I’m so pissed off that my brothers had my mother in their lives longer than I did. I know these are petty things and don’t change what happened, but they are more reasons why I question God and faith and religion.

So many things in life I can attribute to decisions made by human beings. Why the election results? Too many people made the wrong decision. Why are people being killed in our cities? Too many people make wrong decisions, do bad things, trust the wrong people.

Why did my mother get an aggressive and rare form of cancer that took her away from me too fast and too early? I can’t blame that on a person or a decision. I can’t point to something and say, “oh that’s it! that’s why she’s dead and I’m living my life without her and my father is barely living a life at all…” Who else is there to look to? Who else was there to make the choice to give her cancer and take her away other than God?

Is any of this rational? Is anger at God rational? Does God even care if I’m angry at Him? Does God even care at all? Am I terrible for even asking these questions or feeling these feelings?

Hub often calls himself a heathen. He grew up with religion because his mother (and then his step-father) were religious. But he was very turned off as a youngster by the religious leaders in his community and he moved away from his religion. At this point I think he considers himself to be agnostic, though he deeply respects my feelings for my religion and traditions. These days I can more clearly understand his feelings, though not because of any religious leaders, but more because of my current predicament.

Despite my mother’s faith in her religion for most of her life, I don’t really know how she came to grips with any of this during her illness. It wasn’t something we discussed, mostly because I’m not sure she wanted to think about dying. At the end, I don’t know how much of her mind was still there, so I’m not sure she had time to question her faith. Even when we were at the point that the cancer had spread and there was no other medical intervention available, I don’t really know that she knew that. None of us wanted to say that outright to her, and when she didn’t ask specifically, we kept the information to ourselves. In those final days when her mind was still with her, we didn’t talk about the fact that her death was imminent.

I don’t know how to forgive God for my mother’s illness and subsequent death. I don’t know how to let go of the anger.

 

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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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