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Sick and fragile

I’ve been MIA, but not because I wanted a blogging break. Not because I wanted to stop reading social media, or reading books, or crocheting, or using my laptop or iPad or phone.

I’ve been sick. Sick to the point that I was initially bed-ridden, mostly house-bound, and unable to function. It has been close to hell-on-earth. It’s an experience I had hoped to never have again, but the universe doesn’t seem to give a shit about my hopes.

In mid-October on a Saturday, I went to the local Renaissance Faire with Hub, Brother#2 (B2), my MIL, and Hub’s aunt. We were there for most of the day…it was overcast and mostly mild, though I went prepared with a mini-fan hanging around my neck. I haven’t been to the RenFaire in years, mostly because it’s the same acts and shops year after year. Hub likes to go and it’s one of the few times he gets to spend time alone with his mother, so I encourage him/them to go on their own. This year, though, B2 was in town and he expressed interest in going. I didn’t want him to have to go “alone” and I didn’t want him to feel obligated to follow Hub and his mom & aunt around, so I went.

By the time we were ready to leave, I was exhausted from walking around. I’d eaten very little, drunk nothing, and once in the car realized that not only was my body painful and weary, but I had a huge headache. On the car home, the headache turned to migraine (which I seldom get actual migraine headaches), with the fun of light and sound sensitivity. When we finally got home, I took two Tylenol (I never takes meds), drank almost an entire bottle of water, then went to bed. The next day I felt okay, but Monday I started feeling worse. The headache was back, the light and sound sensitivity were back, and I was nauseated. Again I took two Tylenol and went to bed…for most of the day. Then Tuesday I had a vertigo attack that included nystagmus. If you are not familiar…nystagmus definition. This is a factual definition. Emotionally, nystagmus is hellatious, makes you feel sick, keeps you from being able to stand, move, or even see properly. It’s terrifying. TERRIFYING. Add that to the spinning of vertigo and…I can’t even.

For the next six weeks, I had periods of vertigo and nystagmus added in with the nausea, light and sound sensitivity, headaches, increased tinnitus, and major imbalance. Imbalance to the point that I wasn’t walking on my own…if Hub wasn’t around I had to use a walker or cane. The vertigo and nystagmus came and went without provocation, and there was nothing I could do to stop them, either. I had to wait it out. Sometimes it was just a few minutes worth, sometimes with the nystagmus it went on for hours…once it stayed over 18 hours, through my sleep. I was extremely fatigued, so I basically went to sleep at 8pm and woke at 7am most days. Even when I was awake I was exhausted. I was barely eating anything (and not very balanced foods), and in 3 weeks I lost 20 pounds.

Hub made doctors appointments for me because I couldn’t do anything for myself, including talking on the phone. I went to my primary doctor who said it was a sinus infection and tried to put me on antibiotics. I didn’t believe her so I went to an ENT who said it was migraine and tried to give me a migraine medication. I took half of a pill and within half an hour got nystagmus that lasted for ninety minutes, so I didn’t take it again. Then Hub called the doctor that I had seen in 2004 for what was then diagnosed as Migraine Associated Vertigo (MAV), later the term was changed to Migraine Associated Dizziness. The doctor is one of the few who specializes in neuro-vestibular disorders in the country…his office was scheduling appointments into 2019. Hub pleaded and cajoled with the scheduling office, who contacted the doctor’s staff to indicate that I was a previous patient who was having a bad relapse. Bless Hub, he was one squeaky-ass wheel and he got me in for testing the following week, and then in to see the doctor the week after the tests. Meanwhile, I found a physical therapist who specializes in migraine associated vertigo and we set up appointments for balance retraining therapy.

After the testing (some of which I refused to do because I’d had it before, it was HORRIBLE to go through, and it had been inconclusive in the past — specifically the caloric testing) was completed, I started on the migraine diet (in other words, I stopped eating pretty much anything other than plain homemade protein, plain broccoli and cauliflower, and sweet or white potatoes plain) and began seeing some relief from the vertigo and nystagmus. It was slow, but progressively moving in the right direction. My balance remained bad, but that I could deal with…the nystagmus and vertigo were almost too much to bear. I was horribly depressed, crying a lot, unable to get out of the house, and living in darkness because of the light sensitivity. And every sound made me cringe in pain.

I saw the physical therapist for evaluation. She did a lot more testing than I expected, provoked nystagmus and vertigo, and asked me so many questions. The appointment was almost 90 minutes long…it was crazy. She said it was clear I had a history of motion sickness and balance issues, that my vestibular system was highly sensitive, and that combining that with the potential migraine issues, she couldn’t really pinpoint one reason for my issues. But she thought she could help me with balance retraining for my brain and vestibular system. We set up appointments for the following few weeks and went home. I was beyond exhausted.

Then I went to see the specialist who went through a few more tests, took recent history, and did his exam. He felt confidant that I was experiencing a relapse of the MAV, now called Vestibular Migraine (VM). He gave me printed information, recommended a book (that I’d heard of but never owned) on the migraine and headache diet, then recommended several OTC vitamins. He said if I didn’t see positive progress in 6-8 weeks, we could discuss prescription medications. But he said that since I’d been majorly symptom free for many years, he felt I could get there again with the diet and the vitamins.

I was depressed and exhausted. I was struggling to eat anything because I was afraid it would provoke the vertigo and nystagmus. I began (and am still) over-analyzing every food and food additive…so I basically only eat whole food that we make at home. And I’ve hardly varied yet outside my standard “safe” foods. I had stopped eating salt (in case I had Meniere’s which is salt-induced), and only added that back into my food in the last two weeks. I had stopped eating mayonnaise (which I love) because of all the additives, so we tried to make our own at home with limited ingredients, but it was kind of a disappointment. And I found I didn’t want to put it on much of what I’m eating at the moment, so we haven’t made it again. I tried the magnesium that the doctor recommended, but instead of helping to relax my muscles it actually gave me muscle aches and cramps…so I stopped taking it.

I started using my iPad to check email a few times a day in December. Around the same time I tried crocheting a little at a time. Both provoked my imbalance and rocking/swaying feelings, and made me tired. Only in the last week have I been able to turn on my laptop and use it briefly. Hub has been doing everything, including taking care of the dogs, hiring a dog-walker to handle the dogs when he isn’t home (at work) because I couldn’t, paying all the bills, doing all the shopping…everything. He finally caught a cold and slowed down…so I started trying to do more. Then I caught his cold and I’m still sick now. My brothers have tried to help out here and there. I stayed home for Thanksgiving (Hub made us a turkey breast) and I stayed home while Hub went to his Mom’s for Christmas. I only started wearing my glasses again yesterday, as I was afraid they would make my imbalance worse. Fortunately, my glasses don’t seem to bother me…important because I gotta go get my driver’s license renewed in the next two weeks and I need my glasses for that.

So, here I am, trying to get my life back. And I’ve added in this new fear of food. There have been some issues I won’t talk about, and then on Friday a health incident with my father, which I WILL blog about in a day or two. As for now, I need to get off the laptop because I’m starting to feel rocking/swaying from the screen.

 

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Calgon take me away

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


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

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

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

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

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

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

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

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

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

 

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2190 days

Six years.

It’s been six years since Hub and I had to let our Sweet Pea go to the Rainbow Bridge. I post about her every year, usually before the anniversary of our loss, but this year I didn’t. I’m writing this today, ON the day, 6 hours after we let her go. Today, as it happened on the first year anniversary, I am alone at home. Hub has been out since early this morning and will not be home until late tonight. I have not and will not bring up the anniversary to him…he deals in his own way and I deal in mine.

I was re-reading what I’ve written in the past on this day, and I cried. I cried for the pain of losing her, I cried for the pain of loss, I cried because it hurt me how much she was hurting in the last weeks. We never had a final, concrete prognosis of what would have happened if we had made her try to hold on…would it have been days, weeks, months? It didn’t matter in the end, because there was too much pain in her for us to even consider prolonging her life. There was no way…

In all I’ve written, this is what I would want to say again and again. I just don’t want to find new words this year.

In 2011, she started slowing down. Not surprising to us, because based on what we knew we adopted her, she would have been going on 12 years old. That’s old-age for a large dog. Then, in late July of that year, she developed a cough. It scared me. We took her to our vet, but he found no reason for the cough…but found an auto-immune disease that would explain her increased and pretty marked lethargy. And as the tests continued–along with medications–the news got worse. And so did Sweet Pea. She became unable to walk the stairs to our bedroom, so Hub began sleeping on the couch in the family room to be near her. She started having trouble walking down the three deck stairs to the yard, so Hub began helping her out to the front yard down only two concrete steps (one step out the door, then the concrete porch and one step off the porch) to do her business. Then she began having trouble getting up…and the medications made her pant heavily…and they made her painful. And every day, I died a little inside. Not only because we knew this was serious–likely fatal–but because she was suffering. Even though it was only a little at that point, there was no uphill from there. I prayed she would give up. I prayed G-d would take her in her sleep–though she only dozed during the day, she was restless at night. I prayed that we would get some kind of report saying there was no hope and that it was time. I got none of it. The tests were inconclusive, but experience from our vet said there was likely nothing we could do except extend her life a few weeks or a few months…maybe. But in the end, she was not going to last long…and it was not going to be an easy time for her. And letting her hang on and die “naturally”…our vet said it would be painful for her. Like drowning, or being unable to breathe…struggling, gasping. It was three weeks from the first vet visit for a cough to the day we took her in for her last visit. In between was medication, tests, an emergency drive two hours away to an ER vet for a transfusion (where she had to stay locked in a cage overnight without us) during a bad hurricane, there was a bad reaction to the infusion, more tests…and pain. My sweet, loving, gentle girl snapped at a vet tech who barely touched her, snapped at our vet when he tried to help her, and cried. She’d never done any of those things in the nine years we’d known and loved her. She’d never snapped at anyone, ever, over anything. Man or beast. And then there were the eyes. She watched us every day, with these big, sad eyes. Pain seemed to radiate from her gaze. We hesitated to touch her because we thought it caused her pain. I laid on the floor with her in our dining room…the softest carpet in the house, and I stroke her paw. I stroked the spot from between her eyes down to her nose, so lightly I barely felt her fur. I wanted to hold her and hug her close, but I couldn’t. I wanted her to make the decision for us, but she refused. She refused to stop caring for us. She refused to let go, because she knew it was her job to see to us first. We had no choice. We had no fucking choice.

We took her in to the vet. I talked to her from the moment they put her on the table until long after she was gone. I told her that we were letting her go, and that her job was over. That it was our turn to take care of her the way she had taken care of us for the last 9 years. I told her it was all right, that she could go, she could be free of her body that was betraying her. And I cried like I’d never cried before. I told her how much we loved her. I told her how thankful we were to have her in our lives. I told her how much we would miss her. I sobbed and I petted her and I held on to her. I smelled her fur and her feet and touched her ears. And I cried. And inside, a part of me curled up and died with her.

We took her to our property and laid her to rest in a pretty spot near my parents’ dog, who had died one year prior. It was incredibly hot and humid, but my family–my brothers and my parents and Hub–dug a hole. Deep and wide, so there would be no concerns about the animals in the area. And it was so hot out, but they did it. And they put her in the grave, wrapped in her two favorite bed covers, with a couple of her favorite toys and an unwashed shirt of mine that smelled like me.

I can’t tell you the tears I’ve cried for my girl. I can’t tell you the hole in my heart from the loss of her. I can’t tell you how much I’ve changed because of her. I can’t explain how much I’ve changed with the loss of her.

I’ve written about her a lot. A lot in the first year she was gone. Not as much during the second year, though I’ve talked about her often in a professional and personal setting. I think about her every day. I’ve gone back and read the things I’ve written about her…and cried like it was the day that we let her go. I did it today in preparation for this post. It was incredibly painful. It IS incredibly painful.

I posted this on her six month anniversary, elsewhere. I re-read it earlier and every word is still the truth for me today.

I woke this morning early, looking directly at the clock by my bedside. The clock shows not only the time, but the date…and I almost felt my heart stop. I had been crying most of the night after I turned off all the lights. Images of the day we let SP go were running through my head, making me sob like it was the day it happened. I am crying now as I type. So when I woke this morning, I was fuzzy-headed, and I could swear the clock was telling me today’s date was 3-3-12. How could that be? I knew today was the six month anniversary, and that SP had left us on 9-2-11. I couldn’t believe I had missed the day, although I have been feeling the pain of this date for weeks.

I stayed in bed for hours, long past my husband let Le Moo out and went on his way to work. I stared at the clock, tears clogging my throat as I berated myself for missing the 2nd. It wasn’t until I was standing outside with Le Moo, staring at the trees in our back yard, when I realized that my clock must not have allowed for leap year. I KNEW today was the 2nd…I knew today was the day. I had spent hours thinking about it, not knowing how I could have been mistaken.

I feel whipped and beaten. I spent most of the hours crying last night and early this morning thinking that I desperately wanted to go to the basement and bury myself in the dog bed SP slept on in our old house in our bedroom. It’s an atrocious 70s orange color, something I found at overstock and bought merely because at the time it was the only memory-foam dog bed I could find big enough for her that we could afford. She loved the bed and we put up with it because of that. I mean that color would burn your retinas and I have no idea why it was ever made, but she loved laying on that thing. I suspect before the afternoon is over, I will be sitting with that bed, trying to find her smell and looking at the dog hair I hope it still clinging to it.

I cannot tell you how often I ache over the fact that I do not have a pawprint from her. I know there is one embedded in my heart, but I wish I had one to look at and touch. I have finally put one picture of her on my wall in addition to the polaroid picture I keep next to my bed. I want to put up so many that I fear it would cover the entire wall…but then I think it would kill me to see them.

I feel like I cannot get past this loss. I feel like I will never get past it. I still think of her every day. I still wish that she was here with us. I still look to step over her next to the bed. I cannot believe I have woken up without her every day for the last 180 days…how is it possible? How have I made it?

SP, I carry this pain of your loss every day. It is a part of me and will always be. I miss you so much that sometimes it hurts to breathe. And he misses you, too. I see it in his eyes and I feel it in his heart, even though he doesn’t show it the same way I do. You know how much he adored you, how he lived for those early morning and late night conversations with you. How he looked forward to coming home from work every day to see you waiting for him at the window, or at the top of the stairs, wagging that gorgeous tail of yours. How we both loved your big brown eyes and the “eyeliner” that Mom swore you woke up early every morning to put on. I miss touching your soft fur, feeling you snuffle my face and my eyes and my hair. I miss hugging you and calling you Sweet Pea. I miss singing to you when we went downstairs every day for lunch. I miss you, dammit. There isn’t a thing about you I don’t miss. The way you would eat your food, then come find one of us and burp right in our face like it was a “thank you”. The way it felt when you leaned against us, sharing your love with us. The way you used to run out into the yard to see neighbors walking by the fence…the way you used to run back to the house looking happy and “lighter” after you poo’d.

And as I sit here, I remember your last days, and I sob for the pain. I remember sitting on the floor in the dining room, on that atrocious pink carpet you loved to use as a scratching post for your toenails…I was already in pain as I considered what lay ahead of us. That we would have no other option but to let you go, to take away the pain of your disease. I remember posting here, asking for guidance and support, knowing that we had to do the right thing. I remember laying there with the laptop nearby, wishing I could hold you close and never let you go, but knowing even the smallest of caresses could cause you physical pain. I remember touching your paws, hoping it would not be too much for you. I remember using one finger to stroke the spot between your eyes and down your snout, praying it would not bring you pain but give you comfort and show you my love for you. I remember sitting in the family room, begging him to take a picture of the two of us because we had NONE….but only hovering over you because I was afraid to touch you. I hate those pictures. I remember taking you to the vet hospital, and sitting in the car with him, both of us dreading the moments because they were our last with you. Your beautiful gorgeous face, watching us, looking so tired and old and sad…the pain from the meds and the disease having beaten the life from you. And when we arrived, how you tried so hard to get out of the car on your own, but we wouldn’t let you. We were so afraid you would hurt more. The moments when we stood with you in the exam room, as the vet gave you treats to say his goodbye to you. The way you laid there on the table, so trusting and loving, but so tired. I hated every second of it. I hated that we had to do it. I hated that it had to happen. I hated that we had to let you go. It was so bittersweet to see the pain lift from your body as your life ended.

I am literally doubled over in pain, sobbing with the pain of this all. Of the memories. Of the loss. Of the regrets.

I love you, Sweet Pea. I love you, Sweet Pea. I love you my precious beautiful Sweet Pea.

It’s been so many years without my Sweet Pea. 2,190 days…the Polaroid picture of her is still in the exact same place next to my bed, on the corner of my dresser. Every now and then I go look at pictures (other than the one that is the background on my laptop) and a few videos we have of her. On the landing going upstairs, there’s a picture of her front and center on a console table…I never want to forget her smile, or what she brought to my life.

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I miss her so much.

 
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Posted by on September 2, 2017 in anxiety, crying, death, dogs, grief, loss, love, Sweet Pea

 

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Shock and OW!

I know that I said previously that I wouldn’t be seeing the neurologist for my EMG until September, but that changed.

I had such a terrible weekend. Saturday I basically did nothing because I felt so weak and tired. We went to bed at our regular time that evening, but at 12:30am Sunday morning, Hub and I were awakened by SCREAMING smoke alarms. In our house, all our smoke alarms are interconnected, so if one of them detects something every single alarm goes off. Not only does it make that horrendous alarm noise, but it also yells “FIRE! FIRE! FIRE!” I literally sat straight up in bed and hit Hub in the chest to wake him, then I turned the overhead light on. The dogs were freaking out, I was trying to get dressed, and Hub was trying to unhook himself from his CPAP machine, all while the alarms are screaming and yelling, and the dogs are running around the bedroom (we keep them closed in with us at night). We finally are semi-dressed and have shoes on and we open the door to the hallway and the screaming gets louder because there are more alarms in the hallway and in each of the bedrooms. I tried to get the dogs downstairs to give them treats (they always get treats when there are loud noises) while Hub tried to silence the smoke alarms (the dogs are still freaking out and Butthead races into her crate and won’t come out even though there’s an alarm nearly over her head still screaming). We don’t see or smell fire anyway, but Hub goes to investigate the whole house while I retrieve Butthead and rush the dogs outside and away from the noise. When Hub comes outside he tells me he has ripped down several of the detectors and the noise has stopped. I’m not happy, I’m afraid that there’s a fire in the attic or in the walls or there’s CO2 somewhere and that’s why the alarms went off. So at about 12:45, I find and call the non-emergency number for the fire department, and I explain what is going on. They take my address and say they’ll be out to the house shortly…and while we’re waiting the alarms go off again, so Hub rips MORE detectors off the ceiling and when the silence reigns again he takes the dogs into the basement so they can’t get out of the house and I go outside to wait for the fire department. To try to shorten this story–which really has nothing to do with this post–the firefighters come out to the house in the middle of the night, and after inspecting the entire house, they figure out that ONE of the smoke detectors has malfunctioned. And because it was wired into the “system”, it sets off all the other detectors in the house. Bless them, the firefighters were pretty awesome, and by 1:30am, they were walking back down our driveway in the darkness to load back up onto the firetruck they had left in the street. We were awake, trying to re-settle the dogs and ourselves, until about 2am.

Okay, so Sunday night I pretty much had a bad breakdown. I was just sobbing over how bad I was feeling and how tired I was and how afraid I was. I felt like I was getting worse, that my weakness was worse, my fatigue was worse, my imbalance was worse, and that now I was having trouble with my hands/arms and not just my legs.

For only the second time in the four and a half years I’ve been seeing T, I actually contacted her to seek guidance and help after-hours (or out of a normal session). The only other time I’ve done that is when my mother died. I am so grateful and so lucky that she took the time to talk to me in email (which is how I contacted her). I can’t say anything got resolved or that I even felt “better” in that moment, but knowing someone was out there to reach for–and who would reach back–was enormously helpful. Yes, Hub was here and he was being supportive, but this time it took a more confident and experienced communication.

When I finally caught my breath, I was so exhausted from struggling during the day and crying for hours that I went to sleep at 9pm. When I woke up the next morning, I called to see if my primary doc could see me, even though I didn’t think it would be helpful. They were able to fit me in just before lunchtime, and Hub took time off of work to go with me. After that phone call, I called the neuro’s office to see if he had any cancellations where he could fit me in for my test. The receptionist said no right away, because she had just gotten off the phone with someone else asking the same thing. So I asked to leave a message for my doctor, and I told him I was feeling worse and that I was having trouble with my hand/arm. He called within thirty minutes and fit me in for the EMG for two days later (that’d be today).

I went to my primary, who said she didn’t know what else to do for me except to send me to see a sleep doctor to see if I was having some kind of sleep disorder, and also to an infectious disease doctor to talk about Chronic Fatigue Syndrome. We were sitting in her office and I was so damn tired and frustrated that I literally put my head down on the edge of her desk and tried not to cry. She asked me what was going on and I told her, I was exhausted, frustrated, and scared. She immediately asked me if I was depressed. I was both annoyed and frustrated with this, because ANYONE in my shoes, with this length of exhaustion and weakness, and not knowing what was wrong, would be afraid and sad and upset. I thanked her for the offer but said I wasn’t ready to do that right now. She told me to try to stop focusing on my symptoms because I would surely make them worse by doing so, and to continue with my neuro appointment.

After that, we ran off to get my blood work done for the neuro and then we went home. Fast forward (cuz this is soooooo long), I spent most of today trying not to think about the test and/or what it might or might not say. I semi-obsessively check my laptop to see if my blood work has come in while trying not to spend time searching Dr. Google. We finally head off to the neuro office and within about ten minutes we are back in the testing room. I had read a little about the test(s) and heard both that it was no big deal and that it hurt like a mo’fo. I think I ended up somewhere in the middle.

The neuro doctor is very quiet in general, so there was almost no talking. The room had to be like 85 degrees, which I assume was on purpose because some of the testing is on muscles and maybe the heat keeps them relaxed? The first part of the test was where they put some thingys on you and then send an electric shock through certain nerves. The second part they use needles, stuck into your muscle, to record some kind of feedback. I asked what the needles were like and was told they are thinner and shorter than acupuncture needles. When he started zapping me with electricity, I asked if the needles hurt more or less, and he said “there’s no electricity with the needles” and went back to his zapping. So after another few minutes of silence and him randomly saying “zap here”, I ask him if his patients say the electricity is worse or the needles, and he says “it goes both ways.” *sigh*

The zaps range from a slight sting to a full-on-stick-your-fingers-in-an-outlet zap to OH SHIT THAT HURT LIKE A MO’FO. Fortunately, they are pretty quick zaps–up and down both legs in multiple places and along one arm and hand–and within about forty minutes we are moving on to the needle part of the test. He actually started with my arm and it really wasn’t all that bad, as long as I didn’t look at what he was doing. When he moved to my first leg, it was fine until he went into the inside of my calf and then it HURT. Especially he had trouble finding the right spot to be in and he had to sort of shift it around and push harder and that was pretty bad. The same issue happened with the other leg, but then we were pretty much done. After I got dressed, I asked him if he saw anything and he only said, “nothing jumped out at me” and said he’d have to go through all the data that had been collected during the test in the computer. I asked if there was anything I should or shouldn’t be doing, and he only said to stay hydrated and to rest. He scheduled us to come back for a follow-up for next Wednesday, so I have a week to sit and wait…

Tomorrow morning I go in for my CT Scan for my cancer follow-up. My father is driving me because Hub has to be in the office and I feel so weak and off-balance that I am afraid to drive myself. Friday I have a massage therapy appointment, which I hope I can get to, and I might have to have my father drive me again. I had cancelled my PT appointment for this past Monday because I didn’t think I’d be able to do it. I hope I can return to it this coming Monday, because I need to continue to try to make progress on my shoulder.

For now, I have a headache and I think I need to go to sleep. I have to get up early to start drinking the crap for my CT Scan, so off I go.

 

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I need a minute

I had my hair colored yesterday (more in another blog), which took about two hours. This morning I had to get up early to go to PT (her first appointment of the day) so that I could get to my neurology appointment on time.

This was my second PT appointment, the first with full treatment since initial appointments include lots of time for evaluation and pre-treatment measurements. I’d been doing the stretching exercises she assigned me since Friday, so I have been doing some work. Today, though, she did some more stretching…and it hurt. The physical therapist is a very nice, very low-key woman, who spends most of the appointments so far reassuring me that I will make progress and I will feel better. I’ve told her that I am VERY familiar with PT, as I’ve been multiple times over the years. Even so, she seems intent on keeping up with the reassurances…I guess she thinks she is being encouraging, I’m not sure. Anyway, the appointment was painful and I left feeling sore and tired.

When I got home, Hub told me he couldn’t go with me to the neurologist because he had a big meeting come up at work. My father offered to go, but I really didn’t want to have to deal with my dad’s pushiness, especially with a new-to-me doctor. So I said I’d be okay, and when the time came I headed off to the doctor’s office.

The doctor was on time, which was shocking to me, and his space in the suite was a combo office and exam room. It was a little odd, I’ve never seen anything like that. Normally you are in an exam room or you meet with the doctor in a separate office space. We sat down and he asked me what was happening. I gave him my history as best I could–including the recent bloodwork done that had all come back normal–and told him the issues I was having recently. He asked me a ton of questions, most of which I gave negatory answers to…it almost looked like he was reading from a list on his laptop! He then went through the litany of physical neuro tests–most of which I’ve been through before. When that was done, we sat back down at his desk and he stared at his laptop for a minute. Then he started saying that I didn’t fit in this category (ALS) or that category (Myasthenia gravis) or even that category (Guillain-Barré)…and each time he described WHY I didn’t fit. Having been alone, I tried to remember every reason why I didn’t match those categories, but I was busy thinking “oh, but I do have trouble swallowing!” (but I don’t REALLY) and “oh, my upper body IS weak” (but not REALLY) and “oh, I do have tingling!” (but probably that’s when I overdo or my limb falls asleep). It’s like he was giving symptoms (more than I just described) and I was latching onto them, worrying that maybe I really did have those symptoms and they were just on the mild side and what if I had missed the symptoms??

It was hard. I don’t remember which disease was ruled out by which missing symptom(s). I know he didn’t specifically rule out MS (multiple sclerosis) and I don’t know why.  I was afraid to ask. The final result was the he wanted to start with bloodwork for some muscle thing, and that he wanted to do an EMG (electromyogram). He said he had time to do it later that afternoon or tomorrow because of cancellations, but I didn’t want to do something unknown when I had the wedding this weekend. I said I wasn’t available and at that point the best they could do was schedule for the end of August. So I put it on my calendar and left the office.

I drove home, feeling weak and tired…and so disappointed, even though I really had no hopes for the appointment. I guess some part of me thought something would come of it, but it had to be pretty far buried in my subconscious. When I got home, Hub was still on the phone for his meeting, so he slipped over to greet me briefly. I said I was going upstairs to change my clothes, then decided I wanted to lie down for a while. I called my father to update him, had to listen to him talk about the time HE had some sort of muscle electricity test thingy twenty-plus years ago for a possible pinched nerve, then I stripped and got into bed. I barely settled in when Hub came in to check on me…he wanted to know if something happened that I hadn’t told him.

I cried. I don’t want to be sick again…or more than I already am. I’m tired of being sick. I’m tired of being tired. I’m tired of not knowing. I’m tired of having to change my life because I’m sick again, or more. I’m tired of having to grieve for the life I had, or the one I’ll never have, because I’m sick again, or more.

Hub hugged me, and even though I knew he wanted to hover and smother because that’s his M.O., he left me to rest. I just wanted a minute to mourn, you know? I needed a minute to come to terms with the disappointment, with the fatigue of it all. No one ever knows what is wrong with me. I’m always a syndrome…a catch-all that I’m dumped in because I don’t match any known disease or medical terminology.  I’m tired. So fucking tired.

I laid in bed for several hours–though I got up briefly to eat some soup because I hadn’t eaten or drunk anything prior to that–and just did nothing. I just couldn’t get up the energy to participate in life. My body and my soul didn’t want to body or soul.

I got up and had dinner later, and I talked with Hub like I was “normal”, but inside I’m hurting and I’m disappointed and I’m lost. Again. And writing these things has me crying again…

 

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One year.

I love you, Mom.

Every moment, even the difficult ones, were a blessing for me because they were spent with you.

I mark this day in honor of a woman whose life mattered.

I mark this day in honor of a woman who loved her family beyond what words can express. It was immeasurable.

I mark this day in honor of a woman who is loved beyond her time on this earth.

I mark this day in honor of a woman who was generous, intelligent, compassionate, and downright amazing.

I mark this day in my heart and soul, like a tattoo that can never be removed.

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March not better

I thought February was bad. March has been worse.

I’m feeling so shitty, I can’t even. Period. I spend much of my days fighting the nausea and the fatigue…I’m exhausted before I get going. And now…and now, my imbalance is back in a big way. I’m struggling to walk without falling over, and I’m back to touching walls and handrails and tables and whatever in order to keep myself stable. This is a huge slide backward for me, as I haven’t had this kind of imbalance in quite some time.

I went back to the doctor AGAIN because I’m still exhausted and I’m still nauseated. She told me I was acting better this time versus the last visit, but she’s still thinking I have a virus that I need to just “wait out”. She sent me for more blood work (ANA, rheumatoid arthritis, lyme, iron, b12), but everything came back normal. My b12 is a tad on the low side for my history but still in the normal range. I’ve ordered my b12 sublingual pills and will start them ASAP. Maybe it’s that, maybe it’s stress and grief, maybe it’s something else. I have no idea and apparently neither does my doctor. She said to drink more water and walk outside for 20-30 minutes a day. She says dehydration can cause nausea–and maybe it can–but my drinking habits haven’t altered much. Except now I feel like shit and so I don’t want to do anything, including drink. If I go walk outside my allergies will get worse and I’ll have more breathing trouble and more snot and more post-nasal drip and more nausea. The doctor didn’t care for that and told me to do it anyway, that being outside and walking will make me feel better and get rid of my fatigue. I’m not eating much because I’m so nauseated all the time. I rush through eating what I can before I feel like I can’t put anything else in my mouth at both lunch and dinner, then I leave my dishes in the sink and go back to the couch.

I spend most of my days on the couch, barely even bothering to look at my computer. I try to stay upright, but I’m so exhausted all the time that I end up stretched out and wishing that the day was just over. I don’t know why I wish for that because at this point tomorrow will be much of the same. I feel like I’m sliding into this despair of thinking that I’ll never feel better. That it will always be like this. I am trying to push past the exhaustion and do stuff–I did three loads of laundry on Sunday–in the hopes that if I ignore what’s going on it will go away. But by the time I do anything, I feel this crushing fatigue again and I end up on the couch. Or in bed.

Sleeping is a negatory. I try to sleep but it doesn’t work, and when I wake up in the morning I can hardly haul myself out of bed. I don’t feel rested or refreshed or like I even closed my eyes. I want to cry but I’m too fucking tired to cry.

I was supposed to go see my massage therapist on the 14th but our local snow canceled that appointment. I was also scheduled to go tomorrow morning, but I literally got an email at 9:30pm saying she’s sick and has to cancel. And for sure I’m grateful because I do NOT want to get sick and it sounds like she has the flu, but I’m so disappointed. For one thing, I was hoping some trigger point release would help with my imbalance and nausea (hoping, though not confident)…for another thing, getting onto her schedule is a bitch and even though I rushed I struggled to get back onto her calendar. It’ll be two weeks before I can get back in to see her, which might not be horrible because if she DOES have the flu I wouldn’t want to be back in her “hands” too soon. But it’s hard to miss appointment after appointment when I’m feeling so poorly. Hub tried to send me a link to a list of massage therapists in the area, but none of them do trigger point AND it’s hard to just find a new massage therapist. It’s like a mental therapist…you have a relationship built up. It’s not so easy to walk into someone’s space and get naked and let them rub you for an hour.

I see T on Friday, which is the day after the one year anniversary of my mother’s passing. Just happens to be how it worked out. Considering how things are going at the moment, it’s going to be a long, sobby appointment.

I can’t stand this constant nausea. Every time I swallow I feel sick. Every time I move I’m wobbly and off balance and that makes the nausea worse. If I didn’t have the dogs, I’d be in bed all day. I gave thought to going back to bed after lunch today because Butthead had peed and pooped after HER lunch so I knew she’d be okay for a while, but I didn’t want to give in. I’ve been in that place where I didn’t get out of bed for weeks (with my prilosec fever) and that’s a bad road to head down. It only makes me weaker and makes me feel worse.

Hub’s birthday dinner with his family is this coming weekend. I don’t know how I’m going to go…by 3pm, I’m so exhausted I can barely sit at our kitchen table for dinner, how am I going to get out and go to a restaurant and be “on” for his family? For hours… We didn’t go out on his birthday because I couldn’t get up the energy. We didn’t go donate the dolls and bears I crocheted to the police station because I didn’t have the energy to leave the house.

I don’t know what to do now. I don’t know what path to take. I don’t know how to do anything right now.

 

 

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Sleep? Why bother…

Apparently this is what my body and brain has decided. Sleep unnecessary.

I know that for real it has to do with my mental, emotional, and physical pain. All of those wrapped into one, split into pieces, kneaded into each other, and then rolled into a throbbing ball of oneness. I’m so on edge that one small scrape and I’m raw and bleeding profusely, figuratively.

I cried on the way to the grocery store this morning. Not because I had to go to the grocery store, not because I was worried about being able to afford the trip to the grocery store, not because I was afraid I was going to have an anxiety attack in the grocery store… I cried because I couldn’t not cry. I’m tired, I’m not sleeping, I’m worried about Hub and I’m worried about Butthead. I’m worried about myself, too. My grief is overwhelming every part of my life and I can’t seem to dig my way out of it.

Hub is agonizing over a job offer–in part because it might mean less flexibility and he worries that he won’t be able to come home if I need him–that he received on Friday. I’m worried for him because I don’t feel that the company was being up front with him…they kind of bait and switched the job position (which they apparently did to the guy before him, someone Hub knows). I am concerned he won’t have any backup on his work, and I’m worried because if this is how they treat potential employees, how do they treat current employees. But Hub is unhappy in his current job and looking for a way out. Our health insurance changed due to the buy-out, so he’s both unhappy with the new corporate owners and unhappy with their shitty health insurance. Unfortunately, the potentially new company has equally shitty health insurance…so that kind of cancels out the pro/con in that category. Now they’re not budging on a concession he asked about (a minor concession on their part!), so that might be the end of that. I only hope that his current corporate overlords don’t decide that he’s no longer needed before he finds something else.

Butthead is randomly puking again. I mean, it’s good news that she’s not persistently puking like the last episode where we ended up rushing her to the vet hospital and coming home with anti-vomit pills… But this randomly throwing up (twice in the last four days…one of which was this morning which was another reason why I was so upset) is so frustrating. We don’t know if she’s sneaking and eating bad things outside or has gastritis and so her stomach hurts her or what… We’re at the point where we’re acclimating her to a basket muzzle that she’ll have to wear anytime she’s outside so she doesn’t eat crap off the ground and make herself sick. It’s hard and sad to make her wear a muzzle because she’s a good dog, not aggressive, shouldn’t have to wear it. I know it’s uncomfortable and bulky and just plain weird for her, but we don’t know what else to do with her. We can’t figure out what is wrong with her. And if it’s that she’s eating stuff outside that’s making her sick, there’s nothing else we can do other than the muzzle. For the past month or so we’ve been out there with her every minute, following her and standing over her and making sure she’s not eating things. But with the snow and ice, and my physical capabilities being limited at this point…I couldn’t keep up with her and I think she might have eaten something that made her vomit last Thursday when I wasn’t standing over her. We just don’t know what to do with her… So I’m worried that she’s going to vomit again like the last episode. Ugh. So far it’s been these two random episodes and today I spent time on and off modifying the basket muzzle to try to use a quick-snap collar to hold it on her head versus the old-fashioned buckle which is a pain in the ass to get on and off of her, especially with her floppy ears and long hair.

Even though I’ve been feeling ultra shitty and exhausted, we had to do a bunch of things this weekend. Most of which we accomplished. Unfortunately, one of the things was cleaning up the caulk in our master shower which seemed to be growing mold behind the caulk at the joints of the floor and wall. Hub is not flexible, so he had trouble sitting on the floor and scraping at the caulk, so I did 90% of it. Which, of course, hurt my arms, shoulders, and hands more than they were already hurting. The end result, though, is that we need to call in a professional to look at our shower because this is the second time in a year that we’ve ended up with this problem. Last time my brother helped me strip and re-caulk the shower, but now we’re in the same place again… There’s something wrong if there’s mold and mildew growing behind the caulk, especially since we bought mold-resistant caulk. This all means that we don’t have a shower in our bathroom and we have to haul ass to the shower on the opposite end of the house…past all the windows in the front of the house and over the foyer area of the house. It also means we have to haul all our paraphernalia into the other shower, which is smaller than our master shower. It’s not a huge deal, it’s just more stress. And more stress in having to find someone who knows what they are doing to come into the house to fix whatever is happening. The stupid sub-contractor that our builder hired to do our bathrooms did not know what they were doing. They screwed several things up in our master bathroom and ruined a lot of our shower floor tiles by having to go back and chip out all the wrong grout they put in. So we were left with grout over top of grout, and chipped tiles. And the slope of the floor is really bad, which causes water to pool in different spots in the shower and leaves our grout with water stains where the water sits. It’s shitty and depressing and frustrating. That’s all in addition to whatever this caulk situation is.

I have my mammogram on Wednesday. We finally got our health insurance cards from Hub’s new corporate overlords. I opened the mail, found the card, and called for my appointment all within about ten minutes. The first they had was a week away (now this Wednesday) and I took the appointment. I am pretty paranoid about keeping up with my mammos, so I’m glad that it’s only about ten days overdue from the day I had it last year.

I was supposed to have a relaxing massage last week. I had it scheduled in between two trigger point appointments…I normally go to TP massage therapy once a month (ish). So I scheduled the relaxing massage exactly two weeks after one TP appointment and two weeks before the next TP appoint. And then it snowed, and my relaxing massage appointment got canceled. And I really really wanted it. I mean, not enough to endanger my therapist or myself, but I’m so disappointed. I knew this was going to be a difficult month (technically, it’s been a difficult year so far), so I had planned for the relaxing massage–which I never get–and then plans went pfffft. Since my massage therapist only works two days a week, there were no openings for me to do a make-up massage. I don’t know when I’ll be able to fit it in again.

I told T on Friday that I want this grief to have some kind of end date. But with every day, every month, it stays. It’s a solid burden that I carry with me every. This month is especially difficult as it’s the (one year) anniversary of Mom’s death. And with every calendar day I think of what I was doing on “this” day last year. How we had no idea what was coming. How we took her to an arboretum in the city trying to perk up her spirits…not knowing how soon it would get so bad. How it happened so fast. How I was late to Hub’s birthday dinner last year because I was with Mom and Dad helping them with something. How it was only days after his birthday that she was in the hospital and then hours later that she was gone. Grief has no end date. It plays by no rules. It doesn’t give a shit who you are or what you want. It lives and breathes and grows and growls and harps and hammers and changes and does whatever the hell it wants. And it sucks.

 

 

 

 

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The 1st of March

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

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

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

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

 

 

 

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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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