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Category Archives: tinnitus

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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Struggling

I’m still struggling. Last night was a bad night. I ate something that did not agree with me and for the remainder of the night, I was awash with anxiety. It was a typical gluten’d feeling: hot face, feeling hot and cold, anxious, antsy, wired, and thinking about my health. The few times I managed to doze off, I had terrible dreams that stayed with me even after. When Hub went downstairs to work this morning, I dozed again and had more dreams. Bad ones. Unhappy, uncomfortable ones. I’m tired, and I feel down. At the moment, I’m struggling not to cry.

On top of already feeling like crap today, two different times on tv they were talking about women’s health. The first one was heart health, and how women’s symptoms of heart attacks are different from men. When I saw that the segment was upcoming, I took the dogs outside and stayed out for at least half an hour so I would miss the whole thing. It’s too much of a trigger for me. But then as we were getting ready for dinner, there was a local report about breast cancer and how women are just skipping their mammograms. Since my mom was diagnosed with uterine cancer, I’ve been struggling not to dwell on the potential for the hereditary impact on me. I’ve never had a mammogram, though I’m 42. The year that it was first recommended to me, I was unhappy with my gyno, so I didn’t follow through. I’ve not been back to any gyno since that whole episode, so there’s been no one to write me a script to get one. And truthfully, I’m afraid of what might come of it. Now with my mother’s diagnosis, I’m even more afraid of cancer than I was before. Even though my mother did pretty well (relatively speaking) going through her surgery and chemo, I’m way more sensitive to everything than she is, and I’m afraid of everything surrounding the potential of cancer. Surgeries, chemo, pain, nausea, etc etc. But still, the segment on the news triggered me, and I feel anxious and upset. I know part of it is because I’m really tired, but part of it is because I am me.

Tomorrow I go back to the dentist for a cleaning. I’ve enlisted Hub to drive me to and from. I expect he’ll sit in the waiting room and wait for me, even though the dentist is only 15 minutes away from home and it’s only a cleaning. And if they let him, he’d come back and sit with me while I got the cleaning. I haven’t had a cleaning in about 3 years, and prior to that I was in and out of the dentist’s office fairly regularly. I didn’t love it, but I didn’t hate it. But my anxiety is worse now than it used to be for me. And this dentist is new to me, as is the hygienist I’ll be seeing tomorrow, so I’m apprehensive. I’m not anxious yet, but we’ll see how the night goes. Unfortunately, my back has been bothering me all afternoon, but I’ve already rescheduled once and I’d like to get this over with. I know the anticipation is worse than the actual appointment will be. I’ve had enough cleanings to know that they are generally uncomfortable, but not life-threatening. However, this IS the first time this hygienist will be dealing with my frakin’ baby tooth. Urg.

I had my session with T this past Friday. I ended up crying in session, because I told her how much I miss my writing. She keeps telling me that I need to get back to it, because it is my purpose. Without it, she thinks I’ll continue to be stuck and struggle. I want to write so badly, but it isn’t working. I’m angry that my books don’t sell anymore, and that no one ever gives me any feedback. It’s like dumping a child out into the void, never to be heard from again. It’s hard to continue to put yourself out there and never see any kind of return. In that same vein, I made a hand-made crocheted gift for a friend, sent it to her, and never heard back from her about it. WTH. It’s painful for me to say, but I want to be validated. I want someone to say THANK YOU. To say, “Whoa, you put your heart and soul in that. That’s awesome.” What I get is radio silence. And it makes getting motivated to do stuff very difficult. It used to be that I’d write for myself, but that doesn’t seem to be enough for me now. I need to find that kind of satisfaction for myself again, and quit worrying about other people validating me.

I do feel like I’m a bit depressed these days. I’m tired and angry and stuck. I’m in pain. My tinnitus is acting up big time. My weight is still an issue. I have anxious moments. Is that reason enough to be sad? Or is this a depressive episode? Does it matter?

 

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This body

Last night I was not able to fall asleep, so I started working on my thankfulness list. I don’t do it every night anymore, but I still do it when I need the reminder. Or when I need the distraction. Last night was probably both.

One of the things I decided I was thankful for last night was my body.

This body. The one I’m in right now. The only one I have. The one I claim has rebelled against me for years. That has failed me. Yes, that body.

This body, that is too round, too fleshy, too fat. Too dimply. Too hairy.
This body that requires effort to haul around, with muscles that are too tight, joints that that are too painful.
This body that has acne and scars and rosacea.
This body that has allergies and vertigo, migraines and imbalance.
This body with feet that are too big, ankles that are too chunky, thighs that are too wide. Hips that are too wide. Shoulders that are too wide. Butt that is too big.
This body that has hair that is too coarse, too wavy to be straight, too straight to be curly.
This body that has fingernails with ridges, that split long-wise when you sneeze.
This body that has one patch of skin on one hand that itches unbearably but looks completely normal.
This body that has skin on both hands that are dry and crack and bleed all year ’round, that make people ask me what’s wrong with me.
This body that has one eye that doesn’t move right, so that I can’t see to my left without turning my head.
This body that has saggy arms and saggy jowls.
This body that has a stomach that is too big and sticks out to the front like I’m pregnant, but is narrower on my sides than my hips which means I can never find jeans that fit.
This body that has breasts that sag. That don’t fit into bras properly. That need to have extra padding (that I don’t freaking need) to hide my nipples.
This body that has rolls and creases.
This body that has sebaceous cysts. Sometimes in bad places. Sometimes in REALLY bad places.
This body that has trigger points and muscle spasms.
This body that has tinnitus and ears (and cheeks) that burn and turn red-purple from being flushed for no reason (and/or because of allergies).
This body that has stomach issues. Constipation. Diarrhea, bloating, gas. A bladder that keeps me awake at night after drinking less than 4 ounces of water. Or no water at all. (WTF)
This body that doesn’t allow me to sleep. Or get rest. Or feel refreshed. Or find relaxation.
This body that houses my anxiety and my depression.

This body that allows me to help take care of my parents. My husband. My brothers. My aunts and uncles. My dogs. My friends.
This body that makes soup for my mom that is the only thing she can eat the Monday, Tuesday, and sometimes Wednesday that follows her infusions. That makes ice cream which still tastes good to her even when the chemo messes with her taste buds.
This body that carries me through the day so I can crochet chemo hats for patients who need them.
This body that moves me from place to place. That gives me the ability to raise money for charities that are important to me…charities that bring help and healing to many people.
This body that permitted me to write books that touched other peoples lives.
This body that houses my brain. And my heart. And my soul.

I want to love this body, I really do. I want to ignore all the first list and concentrate on the second smaller list…I’m trying. Some days it’s not so bad. Last night when I was trying to remember to be thankful for this body of mine…in the dark of night when I’m trying to ignore how loud and fast my heart rate feels/sounds, saying how I am appreciative for this body of mine felt worthwhile and important. Today, when I’m standing in front of the mirror and I see my naked body, it’s only the first list that crowds my mind.

Without this body–MY BODY–I am nothing. I need to remember that. I need to love my body no matter its form. BECAUSE of its function.

 

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Me speaking to me

My last appointment with T (last week) was partially about Robin Williams, as I felt like it was interesting how it had affected me. RW was a part of my entire growing up years, both in film and on TV, and I was sad. Sad for him and sad for his family. But I also found it interesting how people responded–more about his life and his humanity than how it ended–so we talked about that a bit. Then we talked about how I’ve been kind of stuck on watching (or mostly listening) to Frozen. The songs seem to touch me in some way, and T encouraged me to continue to listen to the songs and “let them do what they need to do for you.” I don’t really like the animation–it in fact is rather offensive to me–but the songs are hitting me right now. So any time I have nothing on the television to watch, I put Frozen on and while I’m doing other things, I enjoy the songs. And it isn’t just “Let it go” that works for me, it’s almost all the songs…even though I don’t necessarily know why.

Once we were finished talking about that, we started talking about my previous homework. T has asked me to listen to a couple of specific Miles Davis songs, to see if that kind of music would move me, but again it was a bust. I see music so different from her (and others, I’m sure) because it’s more a “friend” or companion for me. It’s not about the emotions of the song, or even the words…it’s just about the companionship. I always have something going in the house–the TV or music–because I don’t particularly like silence. Sure, there are times when I will be in silence, but most of the time I like some kind of noise when I’m alone. I have tinnitus, and the way I chose to deal with that is that I keep noise on all the time to keep the tinnitus at bay. So television and music is just background noise…company, that is all. So finding the emotion she is looking for just won’t work for me.

We talked a little about the issues I have with eating–thinking about it so much, and how I not only pre-think it, but then I think about it as I’m eating and after I’m eating–and how that was going. I asked her if I’d ever told her about my grandmother. My grandmother loved us all, and was a huge part of our lives. Being the only girl, I got a lot more of her attention than the boys did, which was not always a good thing. My grandmother had her own weight issues, as did pretty much every woman in my family and in my life. As I was really in the hardest time of my life, pre-adolescence and etc, she was learning how to eat healthier and exercise. She went to extremes (which was “normal” for lots of people during that time period) on a low-fat diet, trying to control her cholesterol and blood pressure and weight. She went to extremes working out as well. And she talked about everyone around her, family and friends and strangers. She talked about their weight and how it fluctuated, and she talked about their size and the food they put in their mouths. And I was always overweight, so she put her hooks into me and tried to “help” me. She took me with her to her aerobics classes, and told me I needed to lose weight and eat differently. This went on for years and years. I never lost weight because I snuck food and I ate the things I wanted to eat when she wasn’t around. I hated dealing with her during those years, even though I loved her so much. I wanted to please her, but I hated that she hated how I looked and who I was. As a child, I had no idea that it was HER who had the issues and that she was projecting them onto me. At about fourteen, maybe a little younger, I was out with my grandmother and my mom. We were shopping for bathing suits for my grandmother because she was headed to Florida for the winter and while there she taught water aerobics to her elderly community every day. So she needed multiple bathing suits and she wore them out. So we went to Loehman’s, which if you don’t know, they were a discount store and their changing rooms were just a big open room where everyone could see everyone. We found her a couple of suits to try and went into the room to keep her company while she tried them on. After she bought stuff and we were back in the car, my grandmother immediately starting talking about some of the other women in the room. How heavy they were, how they didn’t look good in what they were trying on and if they just lost weight they’d look so much better.

I got so mad. I was always the good kid, I never talked back and I clung to my mother all the time. I never stood up to anyone, I never gave my opinion because I didn’t want to have a confrontation. Maybe I was younger than fourteen, maybe I was twelve or so, I’m not sure. But I was sitting in the back seat of the car and I said, “You need to stop!”

“Stop what, darling?” my grandmother asked.

I told her to stop talking about other people’s weight. Stop talking about what they look like or what they should or shouldn’t be wearing, or should or shouldn’t be eating. Stop judging them. She had no idea what I was talking about. I told her she talks about everyone like that, whether she knows them or not. And I said to her, “What if you overheard someone else talking about ME like that? That I’m too fat to wear a bathing suit? That I’m too fat to be eating that bagel? That my hips are huge and my thighs must jiggle…”

I don’t think she got it because I recall her saying, “But you just need to lose some weight and you’ll be so pretty!”

My mother looked at me over the seat back–she was driving–and I think she felt appalled. But she said nothing. I told my grandmother that every time she said those things about other people, she might as well have been saying it about me. Then I fell back against the seat and clamped my mouth shut. It’s possible my grandmother may have apologized and said she would try not to talk like that anymore, but I’m not sure if that’s real or I made that up as an adult to make myself feel better. I only know that things didn’t really change, as she continued to watch my food intake and my weight.

T asked me if I had ever told my younger self that it was not my issue but it was grandmother’s issue. I didn’t answer, but apparently I had a look on my face because T sort of smiled and said that it was clear I didn’t believe what she was saying, that it would make a difference. I asked why she said that and she said that every time she talks about being kind to my younger self, I make a face. I told her I didn’t understand how to do what she was suggesting because I AM an adult, and as an adult I understand what the issues were. And how was I supposed to talk to someone (my younger self) who didn’t really exist anymore. And she tried to tell me that younger self still lives inside me and she’s STUCK because I haven’t gotten past those traumas of my youth. I said I didn’t understand how to talk to “my younger self” in the manner she suggested. So she asked me to try to picture that day and picture all the details. Then picture myself as an adult sitting next to myself as a child. And then talk to younger self about how the things my grandmother was saying and doing were HER issues and not mine. That I’m a fine and creative child, sweet and compassionate, smart and worthy.

I could only tell myself that it was my grandmother’s issue, not OUR issue. Then I cried, and I asked T if I could go home and write this instead of saying it out loud. She said “sure” and asked me to email it her before our next session. I think mostly because our time was up. I still haven’t written it, but I will. I just don’t know how it will work for me or how it will make a difference. But I always promise to try things…and if they work that’s great. If not, I will try the next thing.

Anyone else talk to their “younger self” ? Does it help you?

 

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Chutes and Ladders

Do you remember the game Chutes and Ladders? Did you play it as a kid? I did. I was not a competitive child, and have remained that way as it pertains to games and board games. I like to play, but I don’t like to play cut-throat. I think it comes from being the only girl among my siblings…I hated being ganged up on, and I hated feeling left-out. I wanted everyone to enjoy the game, not lord their win over each other. There are games I refuse to play with Hub because he’s all about cut-throat wins (Monopoly for example…Hub is forever trying to make horrible trades whereby he would be taking all my money on the first go-round. What fun is that?), and that isn’t fun for me.

Okay, so anyway, Chutes and Ladders.

Chutes and Ladders board

You were supposed to make your way up the board, landing on squares that let you climb the ladder–and therefore jump ahead quickly–and avoid landing on the squares with the slides. Those damn slides that set you back soooo far in the game that it was nearly impossible to win. Unless you were playing with Mom, who cheated and fell down a slide immediately after you did so you were both in the same boat. (Love you, Mom!)

So you see that long slide in the middle of the game that originates up there at 87? And slides all the way down to 24? Ye-ah, that’s about how I feel with regards to my knees and my health in general right now. Okay, maybe just my knees (my health is probably 47 –> 29), as I feel I have slid a long way backwards, even though I am still in PT. I’m having trouble walking, both knees are attempting to give out occasionally, and I’m in pain most of the time. Even when I’m not standing, my knees are bothering me. I have to keep my legs elevated, as leaving them bent and hanging–like sitting in a chair or on the couch–leaves me in more pain. But laying in bed or sitting on the recliner with the foot support up…I have trouble finding a comfortable position. Both knees are unhappy being straight and unhappy being bent. They are unhappy going from straight to bent, and bent to straight. It sucks, as pretty much everything hurts. Walking on them is equally as difficult, as the pressure of weight makes everything feel exponentially more painful. Sleeping is uncomfortable, too, as I can’t lay on my back and straighten my knees–that hurts–and lying on my side puts weight on one knee or the other. Even with a pillow between, that weight is not comfortable. I’m not walking up and down the stairs–I haven’t for about two weeks–and I’m not going outside with the dogs (with the exception of Snow Day #2).

Top that with the back pain I’m having these days, and sleeping is very very difficult. That means I’m not sleeping, which is bad, bad, bad. Sleep is where your body gets refreshed, and with no refresh I just go further down the slide. I’ve been feeling crappy. I know that isn’t a technical term, but it’s the truth. With the bad knees, the back pain, and the not sleeping, I just feel crappy. I’m dealing with headaches, a stiff neck, and some fun positional vertigo. I’m also feeling the imbalance that waxes and wanes, but never really leaves me. It’s been more noticeable in recent days, which contributes to the crappy feeling.

Have I ever mentioned I have tinnitus, too? I am rarely ever in a dead-quiet room, because without some noise, my tinnitus gets really aggravating. I fall asleep to a radio, I read with the television on, I write with the television on, I have music on when I’m working. My tinnitus is bugging the crap out of me today. I mean, really, WTF.

And as of sometime this afternoon, I’m getting weird shooting pains up my thighs. I assume it’s a muscle thing, but who the hell knows. Tomorrow I go see T and I am guessing based on my post tonight, I’ll spend the majority of my appointment bitching about that crappy slide from square 87 to square 24.

 

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