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Category Archives: health anxiety

Test results update

I’ve completed recent tests and received all the results.

Neurology
Neurology tells me my blood work is completely normal, which tested for myasthenia gravis and muscular distrophy. My EMG was “long and thorough” and normal. My first and follow-up physical exams were normal. In our follow-up appointment last night, the doctor finally admitted that he was looking for signs of MS–which he says he didn’t mention prior because he doesn’t like to frighten patients–but found none. After he said that, he said he could suggest a brain MRI, but found no symptoms to support getting one. I told him I’d had a brain MRI five years ago at an ER visit and that they found no signs of any issues (other than a schwannoma that was then “not found” at a follow-up appointment). He said if it was five years ago, and I was 40, that if I had MS, they would have seen signs of it already in the MRI. So that was even more reason to skip the MRI. His final words? Wait it out, see if any other symptoms come up, and go out about my life. He said I could try seeing a rheumatologist, but it seemed like a half-hearted suggestion.

Allergy
I saw the allergist on Tuesday. He was very nice, listened to everything I had to say and asked questions. He told me up front he didn’t think the fatigue/exhaustion was related to allergies, but said it was worth finding out what kind of allergies I had going on. He didn’t seem to understand my wheat “allergy” and asked a lot of questions…including when I told him that I’d been gluten free for at least twelve years, he said “and you’ve never eaten just a bite of anything? not even cake or cookies?”

W.T.F.

Would he say that to someone who had a reaction to peanuts in the past and thought they might have peanut allergies? “Not even a peanut butter cup? Not even half of one?” It was a little frustrating. I’m not sure if it was because I’m fat, or because he didn’t think the “allergy” I had was important enough? Either way, I just said, “No, it makes me feel incredibly horrible and I saw no reason to do that to myself on purpose when I knew what the cause was and it could be avoided.” He accepted that and moved on, but I suspect he didn’t really believe me. He tested me with the skin test, both a needle and a “scratch” test (not at the same time or in the same spot), including tests for wheat, rye, and barley. I had no reaction to any of the needle test–including zippo response on the wheat–but the scratch test (which is more “invasive”) popped “mildly” on dust mites. He did not test me for wheat on the scratch test… However, I will note, that when they did the scratch test version, within five minutes of them doing it, their “histamine” scratch area gave me the same response as what I get to eating wheat. My face started to get red and hot, as did my ear. When we went back so the nurse could read my results on my arm, we told the doctor, and all he said was “interesting.” But for me, it shows me that THAT response IS my histamine response, and points back to the wheat giving me a histamine reaction. In the end, he noted it as an “adverse reaction” to wheat reported by the patient. WhatEVER. I read that both skin and blood tests for allergies are only 60% accurate anyway.

Gyn/Oncology
I had my CT scan last Thursday. For the first time, I had terrible stomach issues after drinking the barium, which sucked. I made it to the radiology office, had more stomach issues, then had to stand and talk to the check-in person while she figured out what needed to be done. Then I had to go wait because they wanted to call my doctor’s office to confirm they didn’t REALLY need without contrast as that causes unneeded radiation in my particular case. When they finally got through to the doctor and recalled me to the check-in station, I was then informed that I had to pay for the CT Scan because I hadn’t met my deductible and that I had been notified ahead of time that I would put down a couple of hundred dollars in advance and follow-up the remainder payment later. I had been told no such thing…and I was PISSED and tired and felt like shit and I paid the advance because I needed the test and so what was I supposed to do? The woman doing the CT was SO NICE y’all. She really took care of me, was kind, and helped me work with my impinged shoulder. When we were done, I went back out to where my father was waiting for me in the car because I haven’t been driving myself due to my leg weakness and my imbalance and fatigue. The radiologist said my doctor would have my results by the next afternoon, but I heard nothing. I spent the weekend feeling mild terror, because when I was diagnosed with the cancer, my oncologist actually called me on a Sunday  night during dinner. It was like a little bit of PTSD to get through dinner Sunday night, but no phone call came. I finally found the results online at my oncologist’s portal on Tuesday, which said the scan was clean. Oddly, I never got any notification or update directly from the doctor, which was unusual for him.

Insurance bullshit
As it turns out, apparently the radiology center was correct and I had to pay my entire deductible for the scan because I have SHITTY-ASS INSURANCE (this is new insurance for us since May b/c Hub changed jobs). I’ve never had to pay anything for CT’s or x-rays or blood work when I go to a lab/radiology center. And I also see now having inspected the insurance more deeply that they don’t even cover 3D mammograms. And not only do I pay deductibles for all this shit, but I also have to pay 10% co-insurance. Let’s not forget that I have a huge deductible for out-of-network which means they aren’t even close to covering any of my sessions with T. I seriously thought that we had the most obnoxioiusly horrendous insurance until Hub got a job offer from someplace new and we found that they were offering something called an EPO, which would cost us $50 more a month than we’re paying now and offer us waaaaaay  less coverage. Apparently EPOs are the “new” thing that are essentially HMOs without needing referrals to see specialists, plus they have higher deductibles and cover fewer things. And insurance companies are suckering people in because they think the EPO is more like a PPO (higher level of coverage and out-of-network coverage) when in fact they are more like HMOs. So insurance companies are yet again screwing customers with lies and deceptions. Woo-hoo. Hub, in fact, turned down the job because of the health insurance and was then told the next day that he was the second “high profile” candidate in recent weeks to turn down positions because of the health insurance.

Primary care doctor
My last appointment with my PCP left me with the suggestion to go see a sleep doctor and/or the infectious disease doctor for chronic fatigue syndrome. She also told me she won’t write a note to the insurance company that indicates I have myofascial pain syndrome without me coming back in for yet another appointment–which will cost me even more money–so that insurance might consider covering some small portion of my trigger point therapy. (Neither would the neurologist, despite the fact that MPS is supposedly a neurology classified syndrome AND I was IN HIS OFFICE when I asked him.)

And so, here I am, in the same place with no plan forward. I am pushing myself to do more to see if I can just IGNORE the symptoms away. My imbalance is bad and I’m struggling to keep myself upright. I DID drive myself to PT on Monday, but it is literally five minutes from my house, on two roads that see minimal traffic. When I talked to my PT person, she said she had a client who was diagnosed with a virus who had horrible fatigue for over a year…but that after that she was fine.

I am burned out on doctors. I don’t know what I’m going to do now. Wake up, step forward, keep going. Try not to let my anxiety get the better of me as much as it has. Accomplish things when I can and celebrate when I do. Rest as needed.

 

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Bad bactrim bust

So here’s the history on my sinus infection and the antibiotics I was prescribed.

I’ve taken 8 days of bactrim, 2 pills a day. After the 2nd full day, I have been able to take the pills without having Hub sit with me for an hour. Today I took it after he left for work so I was home alone! I have four little shitty pills left in the container. In addition to all the stuff I’ve previously talked about–including HORRENDOUS heartburn/reflux–I’m now getting itchy. Mild but diffuse. My head, my arms, my back, my legs, my face, my hands, my ears…all little creepy crawly itchy spots. No rash, thank goodness, but itchy.

The heartburn has given me pain in my stomach in addition to chest-heartburn pain, throat burning, inflamed throat-feeling, and it has given me the GERD cough.

I called the doctor’s office twice, and both times I pushed the button to “speak to a staff member” and both times I literally let the phone ring for 3-4 minutes before hanging up. I left a message for my doctor in my online portal, but sometimes they don’t respond to that for a day or two. I ended up calling back and pressing the button for scheduling. The woman who answered said they are really busy (great excuse) but she took the message for me and forwarded it to my doctor’s office. She said either the doctor would call me back or her nurse would.

I do not want to take another pill. I’m concerned this is the beginning of an allergic reaction with hives and the whole schmear. As it is, it’s going to take 3-4 days for the medication to get out of my system…I could possibly still get hives or more itching during that time. The problem is, I don’t want to  have to start over with another antibiotic. Bleh. I’m crossing my fingers that the doctor says 8 days is enough for now and to see how I feel in a week or two.

The smell SEEMS to be abating somewhat, but it’s not GONE. I hope it gets gone because it’s still really irritating. I’m half concerned that I’m getting used to the smell and won’t be able to tell if it’s really gone or not.

SO the doctor’s nurse just called me back. She asked if I had a rash or hives with the itching and I said NO. She said that itching is a side effect of bactrim, and as long as there’s no hives or rash, I can try to finish the last four pills. She said that an actual allergic reaction would include hives or a rash, versus just itching. She recommended benedryl to help with the itching. I don’t take benedryl–or anything if I can help it–so I haven’t decided what to do yet. I haven’t had itching overnight, so I might try to take another AB dose tonight and see how it goes. I mean, I only have FOUR PILLS (two days) left, I don’t want to start all over with a new course of antibiotics if I don’t have to.

But maybe I’m going to ask them to put bactrim on my no-no list from here forward.

 

 

 

 

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Bactrim blues

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

Upon getting my ABs, I come home and go look up my blog post from when I had to take these particular ABs, and I apparently have nausea, bad taste in my mouth, and dry mouth (editing to add, and dry/itchy eyes near to the end of the course of ABs) to look forward to for ten days at least. Two pills a day over ten days.

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

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

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

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

 

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What is that…smell?!

So I think it was Friday when I first noticed the smell. It might have been Saturday, it might have been Thursday. Initially, it was like, WTF smells funny? And I was walking around sniffing. Smelling my clothes, smelling my hair, smelling the blanket on the couch. Then I started thinking it was one of the dogs that smelled bad…because of course they do, they’re dogs. But no, this smell was not the dogs. And it wasn’t the Hub. I thought it might be an old bottle of shampoo I’d been using because honestly, I was smelling it everywhere I went.

I have a very sensitive nose. I think I’ve mentioned that before, either here or in comments elsewhere. I smell every-damn-thing. And there are some smells that just drive me crazy. This was one of those smells. I’ve spent hours trying to define it…it’s like smelling some hot, stale air that is being blown on you constantly. I briefly thought it was the fans on my laptop, but then I realized I was smelling it away from the laptop and even away from the house.

I changed my shampoo, I changed my clothes, I cleaned my hairbrush, I stopped taking the b12 pills that I’d started a few weeks ago…but I just kept smelling it. Sometimes it would go away, then it would randomly come back again. Then I realized that I had a weird taste in my mouth, too. When I wasn’t so intent on the smell, then the taste would bother me. So, like I should never do, I went to Google. I had trouble figuring out what to type in, but I tried a couple of different things and ended up with stuff like: medication side effects, tonsil stones (WTF), tonsillitis, sinusitis. I was fairly convinced that this was tonsil stones, mostly because I had no symptoms of tonsillitis and almost none for sinusitis. I’ve never had tonsil stones before and I couldn’t see any evidence of them, but seeing inside my own mouth is kind of difficult for me. So in effect, no matter what the diagnosis is, the SMELL was coming from me. BLECH. Hub swears he doesn’t smell anything (which the doctor later confirmed on her own behalf), but I SMELL IT.

As I’d mentioned, Hub’s insurance didn’t kick in until May 1st, so Monday morning I asked Hub to contact his HR department to get membership information so I could call my doctor’s office for an appointment. Unfortunately, she didn’t get back to us until late Monday night…and then I had a massage therapy appointment Tuesday morning that started before my doctor’s office opens (Tuesdays are late days for the dr’s office). After my massage therapy, I called the doctor’s office and got an appointment for the following day, which is today.

The doctor pronounced this as a sinus infection. She said my tonsils look like a sinus infection and the “smell” and “taste” symptoms are also signs of sinus infection. I have no pressure or pain, no green gooey or globby snot, just constant post-nasal drip (which I have from allergies) and the smell and taste issue. I’m walking around with this horrible smell in my nose and this yucky taste in my mouth…and now I get anti-biotics.

I HATE PILLS.

Ten days of 2 pills a day–one in a.m. and one in p.m.–which means I get to have pill anxiety twice a day for ten days. Yay. The doctor prescribed bactrim, which I took last year after my cyst issue, and apparently once before that I think for my post-surgery infection. I found this from last year’s cyst blog post:

Upon getting my ABs, I come home and go look up my blog post from when I had to take these particular ABs, and I apparently have nausea, bad taste in my mouth, and dry mouth (editing to add, and dry/itchy eyes near to the end of the course of ABs) to look forward to for ten days at least. Two pills a day over ten days.

I took my first pill about 90 minutes ago. About twenty minutes in, I had an anxiety “flash”…which kind of means I had that ripple of anxiety wash over me and I felt like something wasn’t right. But Hub was with me, and I told him, and I went on trying to distract myself for the hour post-pill-taking. My mouth still feels weird, but I suspect that’s the yucky taste in my mouth bothering me. I’m feeling pretty relieved because Hub says he’ll be working from home both tomorrow and Friday, and then he’s home for the weekend as well, so I won’t have to take any of the pills on my own for a few days. Hopefully at that point I’ll be okay to take them on my own.

And hopefully this smell will go away FAST. It’s really been driving me pretty cray-cray.

 

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What am I going to do

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

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

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

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

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

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

 

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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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