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Category Archives: ER

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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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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Good news, bad news

Which did ya want first?

Remember how I said that G-d didn’t want me to exercise? I’m pretty sure that was reiterated to me Tuesday night. How? Well, thanks for asking.

I decided that since I had trouble with the bike, and I was feeling somewhat better after a weekend of rest and antibiotics, that I would try the treadmill instead. I was going to start off easy, like with the bike, and just get on and go for a few minutes. As I’m walking, I feel my plantar faciitis flaring up but I try to ignore it. I knew it would be an issue. My knees, too, but I keep going for just the few minutes I wanted to accomplish. When I’m done, I’m a good girl and I go right into the shower to clean up and I climb into bed for my evening. About twenty minutes later, I’m sitting up in bed with my legs stretched out in front of me. I twist hard and far to the left with just my upper body, bend at the stomach, and reach for the outside of my ankle where it feels like something is biting me. I can’t find anything, so I start to straighten and zzzzzowie!

My stomach to the left of my belly button twists viciously, making it feel like my innards are being grabbed and twisted hard in opposite direction from my outer flesh. It’s, like, the worst pain I think I’ve had in recent (all?) memory. It feels like my stomach or my intestines or something got yanked and twisted around. And it scares the crap out of me. I get out of bed and try to stand, but I can hardly breathe I’m so terrified. And then it’s over in less than two minutes. And I’m standing next to the bed and I don’t know what to do. I know Hub is downstairs, but he’s busy recording a podcast for at least another twenty minutes. So I try to get back into bed carefully and I wait for him to alert me that he’s done. When he does, I ask him immediately to come upstairs and I try to explain what happened.

He looks mildly alarmed (and upset that I didn’t call him right away) and asks me if I want to go to the hospital or what. It’s now after eight p.m. and I know the ER is going to suck, as it always does. Hub suggests the walk-in clinic, which is close to the hospital, so if they can’t help me it’s a short ride to the ER. I call my dad and tell him Hub is going to bring the dogs over in case we get stuck out for hours at the clinic or ER. I don’t really like leaving the dogs over there now that Mom is gone, because Butthead eats stuff in their yard and then pukes it up (either there or here) since her stomach is so sensitive. No matter how many times I tell my dad and brother about it, they don’t seem to take us seriously. Anyway, I get dressed, then meet Hub downstairs and we go out to the car.

The walk-in clinic is not too busy and they basically take me back in about five minutes after checking in. The medical assistant asks what’s going on, then says something to the effect of, “Gee, I hope your intestines didn’t get all twisted up, because that can happen!” in a kind of chipper voice. I wanted to punch him in the throat. Hub says, “Uh, hey, guy, she kind of has anxiety issues, so let’s not just throw random theories out there if you don’t mind.” The medical assistant nodded and smiled, then left the room. From there, despite the lack of patients, it takes over an hour for the doctor to come in to see us. She asks for bloodwork, pee, and an xray. Says she doesn’t know what it is. It doesn’t feel like anything is twisted when she does a physical exam.

I take care of the pee, the phlebotomist comes in to take my blood (Hub leaves the room, ha!), then we sit and wait (me in a gown and my underwear!) to be taken for an xray. The staff seems pretty nice, but slow-as-molasses. It’s already after 10pm, which is their closing time, and we’re basically still waiting for xray. They finally take me in, do the xrays, and we’re back in the exam room while the staff is cleaning and closing up around us. FINALLY the doctor comes in and announces “KIDNEY STONE!”

What-the-ever-loving-fuck?

So she tells me it’s going to be excruciating pain passing a stone, but that it’s already in my ureter and down partway, smallish in size, and hey, it might pass without any pain, but not likely. So you want vicodin or what? I say, in a small voice, I can’t do vicodin as it makes me nauseated and dizzy. She offers me tylenol with codeine instead and I take it. I ask how long to pass the stone and she says “Oh it’ll be gone by morning. Drink a lot…a LOT of water and be prepared to take the pain killers. Seriously, keep them right next to your bed and be ready to pop them.” We wait around another twenty minutes for xray films on cd, which I’m supposed to take to the urologist as soon as possible. We finally leave and get home, and Hub goes to retrieve the dogs. I shuffle to bed and spend the next three hours pounding down bottles of water as fast as I can, hoping to push the stone through. I also go looking for information on kidney stones (I know, it was dumb) and find that those who get stones (“stoners”) will likely continue to get them for the rest of their lives. Of course, my father informs me he had one once, but only one. So maybe I’ll be lucky like that. Or not. Who the hell knows.

I stay up until after 2am, peeing into a strainer they gave me trying to catch the stone so the doctor can have it analyzed and see how to change my diet to not get any more. Peeing into a strainer is awkward, ya’ll. And uncomfortable. And all the while I’m just WAITING for the excruciating pain. It’s coming at some point, and I am terrified. People say it’s the worst pain they’ve ever felt. Worse than labor without pain medication. Brings big strong men to their knees wailing like children. I put the trashcan right next to my bedside because vomiting is highly likely they say. I take off my necklace that I wear all the time so it doesn’t get in the way if I have to bend over to vomit into the can. I leave my hair tied back for the same reason. At about 2:30am, I give up and try to sleep, but lying down makes me feel nauseated (another symptom of stones!), so I prop myself upright and doze off.

At eight a.m. I wake up and call the urology office to make an appointment. They can’t see me until Thursday afternoon (it’s now Wednesday 8am). I ask the person on the phone what to do until then. She says “did they give you medication?” and I said just the pain pills. She asked about the strainer, I said yes. So she says she’ll see us Thursday. Uh, okay, thanks. I spend the entire day in bed, exhausted from the fear and the anxiety and the kidney stone. On and off I’m sure I feel the radiating “flank” pain they were talking about, but it’s mild. My back aches (another symptom!) but it, too, isn’t much worse than normal for me. Hub is taking care of me, making sure I’m still drinking a lot, and making sure I try to eat something. He’s working from home and spends most of the day in the bedroom on his work laptop so I’m not alone.

Still no hellish pain, so I go to sleep sitting up again Wednesday night, but middle of the night I toss the pillows and lie down. I sleep until Hub wakes me to say good bye…he has to be in the office for a few hours before my appointment. I spend most of the morning reading kidney stone stories on reddit, still waiting for the other shoe to drop (the horrendous pain) and wondering why the hell the stone hasn’t passed into my strainer and why I’m not having to pop pain pills like everyone else.

FINALLY we go to the doctor. They make me fill out stuff on a computer thingy even though I filled everything out online at home the night before. They give me a cup and I go pee, for the first time in over 40 hours, I’m not peeing through a strainer. Yay. Then back into the waiting room, where we sat for over 40 minutes until the nurse calls me back. She’s nice, we joke a little, she asks what we’re in for. When I say kidney stone, she cringes and says, “Ugh.” But tells me the doctor will be in shortly, then leaves my xray up on the computer screen for the doctor to see.

Luckily, the doctor comes in shortly thereafter and we go over why I’m there and how I was diagnosed. Then she sits at the computer and looks at the screen and frowns. Then makes a face. She asks again what happened to lead me to the walk-in clinic. She asks again about pain, nausea, backaches, fever, vomiting…none of which I really had in any major way, except for the initial “short” incident. Then she says… “it’s not a stone.”

WHAT??

She says, “Clinically speaking, if you had a stone in your ureter like they thought you did, you’d be on the floor crying and in pain.” And that I’d have been in pain the whole time, basically, even though it might have come and gone in waves. She tells me the spot is a calcification in a pelvic vein called PHLEBOLITHS. I ask her to please repeat that and she does (I still don’t get it but I look it up when I get home…of course), then she says it’s benign, nothing to be concerned about, comes with aging.

What is the meaning of PHLEBOLITHS are noted in pelvis?
A phlebolith is a small local, usually rounded, calcification within a vein. These are very common in the veins of the lower part of the pelvis, and they are generally of no clinical importance. When located in the pelvis they are sometimes difficult to differentiate from kidney stones in the ureters on X-ray.

Good news, no kidney stone. Bad news, I just spent the last 48 hours freaking out over nothing. Oh. My. Gawd.

We still don’t know what the initial pain was from. It was terrifying. She says she wants to get a ct scan to make sure nothing else is going on, just out of an abundance of caution. I tell her I have to get a ct scan for my 1 year post-cancer check next month, and can I combine the two so I don’t have to do two separate scans. She says “sure” and says to check with my gyn oncologist to get what he needs. She prints my referral for the scan and walks me out. She tells me to come back if I start feeling poorly, otherwise she’ll wait to see the scans.

It’s possible the horrifying pain was from a muscle cramp (in a weird fucking place), but I’ve NEVER felt anything like that before in my life. I just don’t know, and won’t know if anything else is going on until after the scan. I’m waiting to hear from my gyn oncologist to see if I can go ahead with the scan now, instead of waiting for the appointment next month.

Stupid treadmill.

 

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The end of days

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

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

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

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

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

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

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

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

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

She wasn’t wrong.

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

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

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

 

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1 degree of madness

This recovery has not gone well at all.

The surgeon told my husband and mother in the hospital (while I was in post-op recovery) that the surgery went “perfectly” — it only took 30 minutes versus 90 and I lost no blood.

When I woke in recovery, I felt awful and dizzy and nauseated. They moved me to a cube where my husband and mother were waiting, but I couldn’t open my eyes and there was some kind of goo all over my face (forehead, cheeks, nose–which later I was told was from the tape from the breathing tube, but I didn’t have that issue last time). I was so dizzy that I couldn’t open my eyes. I hurt all over. I stayed in the hospital longer this time than the last time. They took me into surgery early (like 8:30am) but we didn’t leave until 5pm. That was over an hour more in recovery this time.

On the way out, the nurse handed over prescriptions. We were both horrified to see the surgeon was sending me home with injectable blood thinner. I had to inject myself in the stomach once a day subQ for fourteen days. I HATE NEEDLES and Hub is so terrified of needles that when he has to have his blood taken for testing, he has to go to a specific lab that has a gurney because he has to lay down because he has passed out in the past. Hub tried to get the injections from the hospital pharmacy so the nurse could demonstrate the first injection, but when he got there they were closing. FUCK.

So we came home and he went back out to put the prescriptions in. The prescription said to start the shot the next day, so I tried desperately to ignore the thought. First night, Hub helped me clean the area with alcohol and I gave myself a shot while he was looking in the other direction. The shit burns…for like 20 minutes afterward. It’s bad. I hate it. I have four more to go.

Saturday night I went to give myself a second shot, but I was really cold. But my face was so hot. So I gave myself the shot, Hub gave me an ice pack for my face, and then he put a blanket over me because I was shivering uncontrollably. And then I had a full-on anxiety attack. I was lying prone on the bed, head covered with the ice pack and a towel, body covered with a blanket, feet up on a pillow, crying and shivering and it was terrible. TERRIBLE. Overnight that night, I was SO HOT. I was sure it was from the surgical menopause. I didn’t sleep, I sat up all night feeling hot and sweaty and miserable. The next day, Sunday, I was pretty miserable. I was able to do my shot that night without another anxiety attack, but I was so hot all the time. I finally started taking my temperature when I couldn’t sleep again. I have 3 thermometers… two oral and an ear one. Two of them were new because I thought my old thermometer wasn’t working right so before this surgery I ordered a new oral and decided to try the ear one. By 1am, all three were reading 101 or over. The surgeon said if I had fever over 101 to seek attention. I woke Hub and we had a long conversation about what to do…ER, walk-in clinic, wait for the morning. He HATES the ER because no matter when we’ve gone, it’s always been mobbed and we end up having to wait forever to get out of the waiting room. It’s a terrible process there…they always seem overcrowded and understaffed. Our choices were limited and I was so freaked out about the fever, that we headed out, leaving the dogs alone in the house because I didn’t want to wake my parents and scare them if we could get in and out at the walk-in clinic. So at 1am Monday morning we headed out, but the walk-in clinic was locked up and closed down, even though the hours showed them as being open.

So at 1:50am, I checked in at our local ER. My temperature on their unit was 100.8 and my pulse was high. I felt like I was burning up. The triage nurse offered me ibuprofen or tylenol but I said no because I had just seen the terrible new report on NSAIDs and heart issues (also the reason why I’ve taken NO pain killers after this surgery). So we sat in the ER while I was hot and cold, waiting for someone to call my name. They took me back for blood and urine and an IV, then sent me back to the waiting room. By about 4:30am, when the triage nurse came to take my temp again and it showed 101.3, I took the tylenol. It was another hour plus before they took us back to a cube. The nurse came in about half an hour later and took my vitals again…the fever went down somewhat and my BP was low. About twenty minutes later, the PA came in and said my bloodwork indicated an infection…probably a UTI. She did a physical, then decided to send me for a CT (with IV contrast) to make sure I had no abscesses from the surgery. Went for CT after giving more pee for a culture (which the next day came back inconclusive), then waited around for IV antibiotics. CT was negative, so they gave me the IV antibiotics and by 8:30am they sent us home with a week of oral antibiotics. Hub and I both went home and straight to bed. He slept

For two days I suffered with the fever, taking tylenol every six hours to keep it below 100 degrees. I’ve never had a UTI before, so I had no idea about the symptoms, even though the PA asked me and the surgeon’s office asked me (when I called to report in Monday afternoon). I thought I was just recovering from surgery and the pain was from that. I thought the fever I had was just hot flashes and night sweats. I just had no idea.

Did I mention also that my baby tooth and the surrounding gum has been irritated since surgery? Even though I told them about the tooth, I think he bonked it. And I don’t have the energy (or the immunity & stamina) to go to the dentist and have them rip it out. Plus, I’m on blood thinners, still, so I suspect going in to have the tooth removed right now is probably not a good idea.

I’ve been SO tired during all this. I assume it’s not just the (second) surgery, but also recovering from the infection. And also the antibiotics are making me nauseated 24/7. I get out of bed and within an hour or two, I can barely keep my eyes open. Then the rest of the day I’m struggling between trying to rest and being exhausted. I am not moving around nearly as much as I did after the first surgery, so despite the fact that I DESPISE the injectable blood thinner, at least it has helped my anxiety somewhat about the blood clots.

I’m also struggling from nightmares about the cancer and tomorrow’s follow-up appointment with the surgeon. I know he’ll have the pathology report, which will set me forward to the next step in this journey. At the very least, I made it through yesterday (Sunday) without a telephone call from him (which is how I heard about the cancer initially, with a phone call from him on a Sunday during lunchtime). It was harder than I thought to go through the day yesterday, as every time the phone rang, I was sure it was going to be the surgeon with bad news…

It has amazed me at how I could tell the different between 98.6 on my thermometer and 99.1. I can feel the heat start, I can feel the chills start. It’s not even a full degree difference, and yet I could tell when it was time to check my temp and take more tylenol. It’s the same with the house thermostat…there’s a major difference for me with 1 degree whether it’s the heat or the a/c. Is everyone else so sensitive? (this was the reason behind the title of the blog post, so I figured I’d better explain the non-sequitur.)

 

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Another detour

This trip has been exhausting and I haven’t really even left my house. Technically, I did the three hour tour, but otherwise I’ve spent most of my time housebound. Not to say I’ve been immobile because my anxiety over a blood clot has not allowed that. But walking around the first floor of my house (with Butthead following me around) is not exactly doing much of anything. I have otherwise read, watched television, or played Two Dots on Hub’s iPad.

I did make another detour. Sunday I was feeling pain in the back/side of my left calf. I was trying not to be too concerned about it, but not succeeding very well. By Sunday night, I was unable to sleep because of the fear of a blood clot. My legs have been bothering me a lot (walking around in my “house slippers” has probably not been the best idea), in all areas, mostly due to my chronic myofascial pain. But this pain I was having in my left calf felt different. It was a burning, stabbing feeling. I saw no redness, no swelling, found no heat on the skin, but I knew not all those things had to be present for it to be a blood clot. Monday morning, Hub was supposed to go to work but I made him stay home and in turn he made me call the surgeon’s office. I was considering the ER to have them ultrasound my leg, but Hub didn’t want to sit there for ten hours waiting to be seen if we didn’t have to.

So I called the doctor’s office and left a voice mail. One of the nurses called me back (they’ve all been very nice, despite me feeling like a whiny baby) and told me she’d write me a referral for a doppler sonogram of my leg and email it to me. I had to find a radiology center to go to on my own, since we’re in completely different counties. So I called the local imaging center nearby and the nice scheduling person got me in that afternoon. I went to the appointment and they took me only about ten minutes late. But the lady doing my doppler sonogram ultrasound thingy was not very nice. She seemed annoyed to be dealing with me and despite me attempting to be nice (as my heart pounded and my PVCs bumped in my chest), she had no interest in returning the favor. I’m not saying she was mean, but she certainly had no interest in being kind or compassionate. Hub reminds me later that it could have been anything–an argument with a coworker, a crappy boss, a sick child at home–but all I knew at the time was that it felt very uncomfortable and I worried whether she was really doing the ultrasound properly.

I asked politely if she could tell me anything and she said no, that they’d send the results over to my doctor’s office later that afternoon (it was 3pm by the time I left). I went home and tried not to cry, but trying to convince myself that if there was some huge blood clot, they’d be required to send me to the ER without delay. So I waited for my doctor’s office to call…and I waited…and I waited. And the office closed. And I spent the evening bound up in PVCs and fear, repeatedly looking at my calf and waiting for some sign of swelling or heat or redness.

Tuesday morning before I even got out of bed, I asked Hub for my laptop and I logged into my email to see if there was an email from the doctor’s office, but nothing. On a prayer, I signed into their healthcare portal and found the test results sitting there (they hadn’t been there the day before). There was a single sentence from the doctor’s office saying “tests came back normal”, but I opened the report anyone to read it carefully. Beyond it saying the report indicating they saw nothing abnormal, they did indicate the test was limited because of my “body habitus”. Meaning, I was too overweight for them to perform the test appropriately. I’ve have ultrasounds of my heart, of my stomach, of my pelvis and I’ve read EVERY SINGLE REPORT and never seen that phrase written before. Are my legs heavy? Yep, they are, and I am well aware of that issue. But what does that have to do with the work they’re performing? There’s no more fat on my legs than there is on my stomach, so I was kind of upset. And I know she pressed really hard on my legs with the ultrasound thingy, because later I was feeling the residual pain from that.

I’m really tired of being anxious about this shit. And I’m tired of the PVCs that are hanging around. My incision is getting slightly better, but there are ends of “fishing wire” sticking out, which I assume are the internal stitches poking through the skin. I’m able to get up and down for the most part, and I finally walked down all our steps today (thank goodness for our elevator) but haven’t walked UP them yet. My legs still hurt and that stabbing burning pain in my calf still comes and goes. On top of all that, my neck is killing me (I can’t turn my head to the right) and my back hurts and my arms are achy. I’m overcompensating for my abdomen with all my other muscles and they’re ALL complaining. I asked the nurse about going to see my massage therapist but she wanted me to wait until after my appointment next week with the surgeon.

Oh, and the headaches are hanging around, which is very frustrating. They feel like pressure headaches and I haven’t been able to get relief from them for a couple of days. That, too, makes me nervous.

Positive note, I did go with Mom to her radiation appointment today. Unfortunately, while she was in her treatment my stomach decided to be unhappy, but I managed and made it back home to rest. I had a little trouble getting into and out of their big SUV, but I didn’t injure anything, so I guess that’s good. Friday I go to see T, but I don’t think I’m ready to drive yet, so Hub is going to take me.

This has been so difficult. Even thinking I would have trouble after the surgery, I wasn’t really prepared to deal with all of this. I hope it ends up being worth it…not that I can go back anyway. I wish I knew when I’ll be able to get past these concerns over blood clots. And also, making myself go through this sort of “exposure therapy” was really rotten. I don’t like it at all.

 

 

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Don’t tell her I said so

But my momma is past the point of “getting old” and to the point of “being old”. This isn’t particularly news to me because as an adult (e.g. past my teens), I’ve been really close with my mom. So I’ve seen her at her most active and agile, and now I’m seeing her age. I’m the youngest of my siblings, with my mom having given birth to me in her thirties. I’m about to hit 42 years old. She’s in her mid-70s.

But it isn’t the “age” part of old that I’ve seen, because I’m well aware that age is just a number. There are days when I am positive I feel older than she does. But these days, I’ve seen the changes in my mom…and my dad. She’s walking more slowly, has less balance than she used to, is not nearly as agile, and has less stamina for pretty much anything. Her hearing has been going for a couple of years, and now I see her eyesight is failing somewhat. There was this point when a switch happened. When she stopped being the mom I knew for years and years, and she became an old lady. She looks like my grandmother, and is starting to act like my grandmother. She’s dressing like my grandmother, and wearing her makeup like my grandmother. It’s a frightening prospect for me, especially considering how close we are. Since I moved out of my parents’ house at 22, I’ve talked to her at least twice a day on the phone (once a day on the weekends). Minimum. For 20 years. Straight. Unless one of us has been on vacation, which doesn’t happen all that often on either of our parts. Now? We live within stone’s throw of each other. If we don’t see each other once a day, we still talk at least twice a day, sometimes more.

Close, ya’ll. She’s my best friend, other than my husband. She’s my role model as a woman and a mother.

Why am I saying this at this time? Presently, she’s in the emergency room. My brother called me and said, Mom isn’t feeling well. My mom never says stuff like this. Even when she gets a migraine, she never says stuff like this. I knew she’d been having some issues, but she promised me she was watching them. Now I don’t think she took them seriously enough. I’m kind of mad at that, but what can I do? So when my brother said she wasn’t feeling well, I said “take her to the ER right now.” My dad called their HMO and diddled around on the phone for like 30 minutes. I got my mother on the phone and said, “Tell dad to stop screwing around and take you to the ER. That’s what the ER is for. GO.” When my dad got on the phone, I said, “STOP SCREWING AROUND and take her to the ER. Go. NOW.”

They finally said they were going, so I ran over to their house so I could see her before they left. She looked old and tired, worn out, but she was standing and walking on her own. I walked with her to the car, kissed her, and said to call me. I’d already asked her if I could go with them to the ER and she’d said no. So when my dad asked if I wanted to go with them, I said no. She’s since called from the ER and said that they told her it would be five hours before they could see her. I’m not surprised. I’ve been to that ER a couple of times. It’s horribly busy all the time, and we’re in the midst of the polar vortex thingy…so they are probably seeing cold weather issues, too. I’m angry and upset that she has to sit there for five hours, but if I have to tie her down, she’s staying until they see her. This has gone on too long.

I already told her that I’d come up and spell my dad (and bring him some food because he’s diabetic) in a couple of hours if they are still waiting. I made sure she’s warm enough and doesn’t need anything, then I let her off the phone.

When my brother first let me know she wasn’t feeling well, I started shaking. Adrenaline rush so bad I thought I’d rattle the windows. I talked to Hub on the phone and tried to calm myself. I talked myself into what might be happening to her–something benign but unfamiliar to her–and made myself chill out before I saw her leave. I wanted her to know that I was not freaking out while she was in the ER, potentially having her own anxious moments. And I’m not freaking out…I don’t feel on the edge of a panic attack or anything. But I damn worried, because what she described to me doesn’t sound so benign to me. I’ve already had to clench my hands from googling, because that’d be no damn good for me. Even if I knew what was really wrong with her–not likely to be found out for sure from google anyway–I can’t fix her. So I am NOT going to google.

Which is why I’m blogging. Even though I’ve now come to a halt with it. Dammit.

They literally waited 5 hours to get back to see a doctor. At present, she’s waiting for a CT scan, likely not to get it before midnight. And then they wait for someone to read it before a doctor comes back in. Hub and I went in to sit with my parents for a couple of hours while they were in the waiting room. We brought my dad some food and we kept my mom company so my dad could take a breather. Then we left them again, and within 30 minutes they were taken back to a room. Now they wait…and we wait.

God bless, I want to google so bad I feel like a junkie. But the truth is, I’m scared to. I’m scared to know what might pop up with her symptoms. I’m scared to get any real ideas in my head. I feel really deep inside me that it’s going to be something big, and that thought is so overwhelming.

I called my parents back and talked to my mom so I could tell her what the CT scan is going to be like. She’s never had one and I’ve had several. Luckily, it’s not a major deal…the worst part is the gross contrast drink they make you swallow. I hope it made her feel better to know what was coming…I know I always like to know. I feel so freaking helpless. I want to be there with them, but I need to be able to help later if she needs me. And if I’m there all night, I’ll be completely unable to help tomorrow or later in the early morning. Fortunately, one of my brothers (and his wife) went to be with my parents for a couple of hours when they transported my mom to a different facility (stupid HMOs).

I hope there will be news to report before this posts.

**I’m hopeful after having talked to my parents several times that she’s only dealing with a couple of infections. We’re still awaiting confirmation.

***Yes, infections. She’s getting multiple rounds of antibiotics over the course of about 12 hours. Then they hope to send her home.

****Well, she got transported to a different facility to get a second round of IV antibiotics. They wanted to do another test, but they couldn’t make it happen, so she’s scheduled that for next week. Meantime, she’ll be on two sets of antibiotics to knock out the two infections they found. When she got home, I ran over to see her to make sure she was all right. She was tired but okay. I haven’t spoken to her since, so I hope she’s sleeping. And I hope she takes things a little more seriously after this, and doesn’t wait over a week when symptoms are bad.

Meanwhile, I’m at least proud that I didn’t freak out at all. I didn’t google anything except what one of her medications was, and I made Hub watch me google it. All I did was confirm it was an antibiotic (I’d never heard of it), and then I closed the browser without reading ANYTHING else about it. Hopefully the antibiotics don’t overwhelm her system and she gets better quickly. I was up past 4:30am texting with my brothers and talking to my parents on and off. I got very little sleep overnight, so I’m hoping to turn in early tonight. We’ll see how that works out.

 
2 Comments

Posted by on January 12, 2014 in anxiety, control, ER, family, fear, google, love, stress, worry

 

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