Tag Archives: vertigo

Where am I

Well, mostly house-bound due to the migraines and related symptoms and episodes. I go to see my therapist and to doctor’s appointments (too many), but otherwise I go nowhere right now. I missed all the winter holidays with my family (who are almost next door) because noise and light and visual stimulation would just make the migraines worse. I also did not go to mother’s day at Hub’s mom’s house, but for more reasons than the migraine shit.

I completely changed my diet for 5 months, eating no grains, no sugar, no dairy, no gluten (well, I’ve been that way), no nightshades. I’ve lost 45 pounds (that I could afford to lose, but I lost it over 3 months which is too fast) and my food anxiety is still here. I eat the same basic foods over and over again, and I don’t eat any snacks or drink anything other than water. At the moment, I continue on this very restricted diet because I’m afraid to add anything back in because it might trigger an episode of vertigo or nystagmus.

I thought I was doing better (see my last post) but then I had multiple episodes of vertigo and nystagmus again, even when I didn’t change a thing I was doing or eating. Horribly depressed, we squeezed onto the specialist’s schedule again and made the trip to see him. One of the things he had given me initially was a prescription for klonopin and zofran. He told me to take both for the drive to his office about 40 minutes away in the city. I did, and had a very disassociated conversation with myself while we were driving and waiting for the doctor. Needless to say, if I have to use the klonopin again (it’s a vestibular suppressant), I will only take half a pill.

The specialist told me I had done all I could with diet, so he wanted to put me on a preventative medication. Unfortunately, there’s no targeted migraine medication (yet), so everything is off-label for other issues. After talking about my sleep issues, he offered me a tricyclic anti-depressant at very low doses. I have medication anxiety due to my incredible sensitivity to medications of all kinds. The first two weeks I had to wait until Hub was upstairs with me and he had to literally hand me the pills. After that (and talking to my therapist a lot in therapy), I tried to just consider the pills with indifference rather than with fear or hope. I take them okay now, but…they have side effects of course (including incredibly vivid horror nightmares that I’ve woken Hub up in the middle of the night because I’m screaming in my sleep). Even at low doses, I am sensitive. And in fact, I had started making the rounds of testing and other doctors because my hands and feet started feeling incredibly cold and both fingers, toes, and feet started turning blue-purple. Talk about anxiety! I tried to reduce my dosage of the medication, but my migraine symptoms started coming back the very next morning. So after five days of that I went back up to the higher dose I’d been on for 3 weeks and I went for ultrasounds of my legs and the arteries in my legs (two different tests). I also saw a rheumatologist and then a vascular surgeon because one of the ultrasounds came back showing that I might have an issue with an artery in my ankle or something? In the end (and this is from Monday of this week) both the rheumatologist and the vascular surgeon said this is Raynauds due to the medication. It’s been suggested I wean off the meds and try something else, although Raynauds is generally not dangerous just inconvenient and annoying. At the moment, though, the meds are helping me to some extent so I need to decide which is better, stay on with side effects or go off and feel like absolute shit while trying another med that may or may not work.

So for the moment, I’m holding on the current medication at the current dosage (MAV specialist wanted me at a slightly higher dose than I am now) until after I see the cardiologist tomorrow because the meds I’m taking could have (or be having) heart implications for me. Another reason I might need to consider switching to a different preventative.

I’m tired all the time, more from anxiety and stress than anything else. Hub is still taking care of so much, and I worry about him. We have someone coming in once a month to do a heavy cleaning of the house, but Hub tries to keep up with everything in between. I barely see my family, I don’t go to any gatherings because the noise and visual stimulation is too much. I don’t see or talk to any of the few friends that I have. I don’t crochet, I don’t read, I don’t use the computer. This is the first time I’ve been on the laptop since my last post in January. I mostly use my iPad and phone, and even then not that much and it does bother my eyes and head.

Meanwhile, I need to find a new neurologist because the MAV specialist said if I’m going to change medications he doesn’t want to deal with it. Which was disappointing and frustrating. He said if his first line of medications doesn’t work with a patient, he then suggests they have their primary doctor manage other medication trials…but I don’t want migraines managed by a primary. And plus, I have to find a new primary because during this round of *shit* hitting the fan (blue fingers, blue toes, was it a blood clot or peripheral artery disease or…) she ordered two tests but MIS-ordered one of them. So I had to go to two different testing locations when I could have gone to one, and I had to pay for two tests when it should have been done in one. AND THEN when one of the tests came back she sent me a note in my portal saying everything looked fine, only I pointed out that the radiologist’s note said one of the results noted “diffuse disease.” And she wrote back, “Oh, I must have been looking at the wrong test results, thanks for pointing that out” and then she sent me referrals for the rheumy and vascular doctor. WTF. How do I trust anything she’s done or said over the 12 years I’ve been going to her? She isn’t reading the reports or paying attention to the results or whose test is whose? W.T.F. So yeah now I gotta find a new primary and start all over again with my complicated medical history. Sigh.

I hope the meds continue to make me feel less awful and that I can keep taking them. Meanwhile, I muddle along. Maybe next week I’ll be able to crochet more, or do more with the dogs, or read a few pages in a book. Or maybe I’ll feel better for a day or two. I seriously don’t even know what to hope for at this point.


Tags: , , , , , , , , , , , , , , , , , , , , , , ,

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.


Tags: , , , , , , , , , , , , , , , , , , , , , , , ,

And so I fly… (part 2)

I flew to Chicago for my niece’s wedding (I forgot to note that my Dad picked up a Bailey’s and cream for me at the open bar…I rarely drink, but I finished the small glass of it, hoping it might help me chill a little before the flight). It was a very pretty wedding, but we had responsibilities at home and so didn’t want to have to stay overnight away from home. So like idiots, we decided to fly in the morning of the wedding (1 1/2 to 2 hour flight) and then turn around and fly home that night. The wedding was at 3pm. Our flight home was at 9:30pm, but remember you’re supposed to be at the airport two hours early to make it through security and to your gate in time to board. Ye-ah. Considering our first foray had a one hour wait in line for security screening, I’m totally understanding the 2 hour timing. I was sure, though, that there wouldn’t be much of a line at seven at night. No shock that I was wrong…it took about forty minutes to get through security this time. And guess what? This time they made me get back into the xray thingy a second time. Then the TSA agent made a face and while I was IN the xray thingy, she made me pull my pants all the way up “to your natural waist, hon”. Um, okay. Problem is, the pants I decided to travel in are my slouchy pants, but I did as I was told. She looked at me again and said I had to pull the pants waaaaaaaaay up so that the crotch wasn’t hanging down away from, well, my crotch. So I yanked my pants up as high as they could go, but she wanted me to also spread my legs farther apart. Which I did. When I came out of the xray machine, she made another face and said she was going to have to pat down my waist and my legs, to which I said, “Okie dokie.” Meanwhile, Hub, who was behind me, scooted through the xray and was putting on his shoes while I was being patted down. Might I mention that his pants were also baggy? But they were jeans, so maybe that’s different? Or they figure men need more room in their crotchal area than women, and thus I was some sort of threat with my saggy crotched pants? Dunno, but I did what I was told. They also wiped my hands with a piece of something-or-other and threw it into a machine. Came back clean and we were waved on our way. So, that was an experience. (Did I also forget to mention that during our flight out, we saw a female TSA agent patting down a lady who was wearing spandex? Who would have been unable to hide anything if she had wanted to? Because I could see the brand name of her underwear through her spandex? –also, said lady was very trim, so don’t think that was fat-bashing, it was just a spandex thing…and a thing about how TSA could possibly think she was hiding something from them…)

Once again, the gate we were going to was at the farthest end of the airport, literally. So we were off on our hike to the gate, where we starting hearing announcements almost immediately that our flight was moved to another gate. The actual last gate in the terminal. Which was already crowded with people, as it was technically two gates in the same area. So we had to stand for twenty-five minutes until they were ready to start boarding because the chairs in the area were all occupied, either with people or, rudely, with their STUFF. And here’s where it starting getting really bad for me. First of all, I was tired and in pain from the first flight, all the walking in the airport, and the hard chairs at the wedding. Then, I started thinking about how we were sort of crammed in like cattle, and that the airline we were taking home was Spirit, which is a discount airline. I bought these tickets because they were the latest flight out we could get (technically it’s considered a red-eye because we were flying “overnight” due to the time change), and because it was a full-size airplane (versus American Eagle which uses a very small-ish plane). But at the gate I was thinking maybe Spirit was flying old planes that no one else wanted. Our plane was already at the gate and I could see it through the window. It arrived and was deplaning as we were told our gate was moved to that gate. And we were scheduled to board only half an hour later…how do they clean a whole plane in half an hour? How do the pilots get to rest in between flights? I saw the flight crew leave with their bags, but then I watched the two pilots get off the plane and go retrieve food for their dinners. As they came back with food, I said to Hub “two hands on the wheel Mr. Pilot-man!” out of jest, but it freaked me out a bit. Were we flying old creaking airplanes with crew who couldn’t make it onto one of the big airlines?

Listen, for those who don’t have anxiety, you have to understand that those of us who do, our thoughts aren’t always rational. I don’t know those pilots, I don’t know the airplanes, I don’t know shit about Spirit except that it’s “no-frills”. I have no clue if their training is different or requires less air-time for the pilots, or if the planes are made specifically as no-frills for Spirit or if, indeed, they are just older planes. But these are the things my brain was telling me at the time.

This time I had purchased the “big seats” in the emergency exit row because they were only a few dollars more when we booked. And I thought on the flight home it would be worth it since we’d both be tired and stressed. It was a good thing because Spirit’s seats are even closer together and smaller than United, which also pushed me further into the “rickety old airplane” theory. We boarded in the second zone/group and found our seats pretty quickly. Just a minute or two later, our seatmate (again the window seat) showed up, and I was relieved to note he was pretty slender, though tall. We let him into his seat, then tried to get settled ourselves. We had tons of legroom and just a little larger set of seats than we’d had on United, but we were also responsible for the emergency exit in the case of, well, an emergency. The seats were old looking, and everything around us looked kind of sparce and ghetto. Nothing seemed…finished. Like the plane was from back before they made things…pretty. It sucked, ya’ll. It really revved up my anxiety because it made me feel like we were flying secondhand airplanes. And to make things even more fantastic, as we were finishing up with boarding, two girls stumbled onto the plane, one of them making loud, drunken apologies on how they were running late. Then they proceeded to take the seats–you guessed it–right in front of us, one on each side of the aisle. Oh jeez. They were probably just barely into their twenties, drunk and acting stupid (one more than the other), and being really loud. They were punching each other back and forth across the aisle. Then the flight crew came to do their safety speech, and lucky them, the steward had to do his speech and demo right there next to the drunk girl. I’m pretty sure one or two of the times he bent/knelt down to pick something up off the floor, the drunk girl touched him inappropriately because he sort of started and then glared at her. Then another steward came to talk to her while the safety demo was still going on. After the safety demo, the steward put the stuff away and went back to the front of the plane briefly, until the girls starting acting up again, then he came back to quietly chastise them and warn them about further disturbances. The drunk girl started making a fuss and he shut her down, very quietly and very politely. She asked for her neck pillow from the overhead compartment, which he nicely retrieved, then within minutes she was asleep, flopped about like a doll.

I hated her. I hated the guy sleeping next to me. I hated the others asleep on the late-night flight. It sucked because I was really upset and unable to even sit back and relax, and there they were sleeping! So we head off to taxi along the runway and I plaster myself to Hub’s side again, while he’s watching an episode of Firefly he’d downloaded (to distract himself…poor Hub, being upset himself and having to deal with me…*sigh*). I had my headphones on again, but this time the plane was even louder and I had trouble drowning any of the noise out. As we took off, I felt like the plane was rattling around me, again like it wasn’t made very well or was old and on it’s way to tearing to pieces. I pressed my face against Hub’s shoulder and I cried. It was so hard to maintain myself at that point. I wasn’t having a panic attack, at least not in the way I know them, as my heart was very steady and I didn’t feel that overriding sense of doom and despair…I just felt tired and overstressed and I just wanted to be home. I didn’t want to have to fight my way through the discomfort of the turbulence or the feeling of the airplane dipping and turning, or ascending or descending. I just wanted to be done. I wanted the day to be over. I wanted to not be so tense or feel so vigilant. Hub had spent the entire day watching the clock, checking his phone nearly every twenty minutes (he told me) to make sure we were on schedule wherever we were. He told me as we were heading home from the airport that it made him feel in control. We both knew that was a crock.

The flight continued, as did the extraordinary noise (how did those people sleep through all that?). Twenty minutes prior to descent, the pilot came on with the announcement that we were approaching our home location. I spent the next twenty minutes clutched up against Hub, vacillating between crying quietly and telling myself that we HAD to go through the turbulence and descent in order to be done with all of this. Descent seemed to take forever, and although I thought I was more prepared for landing, this one was soooooooooooo loud and bumpy, it felt like the brakes were screaming the whole time. We finally taxied around to the gate and lined up to get off the plane. I was exhausted, beyond what I’ve felt in a long time, because it was all wrapped up in the physical and the mental and the relief of it all being over.

Only later did I realize that when I’d done some searching on the best place to sit on a plane before the trip, all the articles said to sit toward the back where there is less noise and less feeling of movement. I doubt highly about the movement, but from these two flights back-to-back, I do realize that it was quieter in the back of the plane. I didn’t hear them testing the flaps on the plane, I didn’t hear and feel the landing gear going up and down, and in general the engine noise was lessened in the back of the plane. Also, in the dark on the way home as we were approaching descent, I glanced out an open-shaded window and saw what looked like lightning, which freaked me out. I suspect it was the lights on the wings blinking, but that’s not something you see from the back of the plane, either. The drawback is, there are no seats in the back of the plane with extra legroom (that I’m aware of), so you get screwed on that. Do you deal with the extra noise and such and get larger seats with better legroom, or do you squish into the back seats for the reduction in noises? I dunno, but I will note that my flight out (back seats, smaller, less legroom) was an easier flight for me than the one coming home with the bigger seats. Then again, I was exhausted on the way home, and probably a little over-tired from the alcohol I’d consumed (which I literally never drink, ever, mostly because I don’t enjoy booze and the stuff that I do like–Kahlua and/or Bailey’s–make me so sleepy that I’m ready for a nap immediately upon finishing what is in the first glass I’ve had).

When we got off the plane, it was like the airport was deserted. We had to make the long walk to the baggage area to try to find the shuttle back to the car. Then it was a ride from the airport to the parking garage once the shuttle picked us up. And then from there, we were off for home, where our pups were waiting for us with much glee. We were very fortunate that a good friend of mine hung out with the dogs all day, while my parents’ hired a pet sitter to come watch their dog for the day we were gone. At one a.m., we picked up my parents’ dog and brought her to our house to spend the final night with us until my parents arrived back home. We were all sacked out by 1:30am, none of us really wanting to get up just a few short hours later to start the week.

By the time this posts, we’ll have already taken Le Moo in for surgery to have a thing removed from her eyelid, and my mother will have had her second infusion of the new medication to shrink her cancer. Later in the week, if needed after Butthead’s xrays (same time as Le Moo’s surgery), we’ll be back for another session of water ballet!

I am so glad this trip is over. I’m thrilled for my niece, and I hope she has a happy and love-filled life. But after this, she can come visit me.


Tags: , , , , , , , , , , , , ,

And so I fly… (part 1)

Spoiler alert: I made it home alive (and so did my husband).

Yeah, so the trip is over and I survived the flights both going and coming back. It was not fun either time and I hope to not fly again. Ever.

Our round trip was Sunday. On Friday night I started getting nervous. More about whether I was going to forget something or get to security and have to throw something away. But behind that, I was starting to get nervous about the flight itself. Hub isn’t a good flier either, so he was starting to get nervous, too. In some ways, that made me feel better because he doesn’t have anxiety and yet he was getting worried about the flight. Anyway, we left for the airport and parked our car in the daily lot, then grabbed the shuttle to the airport. We found the security line, which ended up taking almost an hour to get through. It was crazy ridiculous. I did what I was supposed to, including putting my liquids (mostly makeup) into a clear baggie and on the conveyor belt outside of my small bag. But guess what? After going through the xray doohickey, they stopped me and a female TSA agent said she was going to have to pat me down around my waist and my ankles. I actually thought nothing of it at the time, just let her do her thing, then grabbed my stuff and my shoes and went to where Hub was putting his shoes back on. We hurried along to find our gate, which seemed to be the last gate on that concourse, of course. Once we got there, we found seats and tried to stay occupied. We had about 45 minutes before boarding. I kept asking Hub if we needed to be in line for something because people kept lining up, but he said they were getting their seat assignments, which I had already done online when I booked the tickets. Also, I had checked in online (for both flights) the day before so it would save us some time and money.

They finally started boarding the flight. We were almost in the last group to board because our seats were in the back of the plane. I haven’t been on a plane in 17 years, so I forgot how small the aisles and seats are. And of course, I’ve got nicely padded hips…and our seats were in the back, so I had to pass alongside all the passengers already boarded. That kinda sucked. When we got to our seats, we found the person in the window seat was already there. Thank goodness he was a small guy, so I didn’t feel like I was smushed in between him and Hub, who is a big guy. We put up the arm rest between Hub and me, then I went to find my crochet in my bag. But I realized REALLY quickly that there was absolutely no elbow room to crochet. Ugh. I was really counting on that as part of my relaxation technique. So I swapped it for a book, then plugged in the headphones for my iPod and put the earphones over my ears. Were you aware that United uses their headrest tvs to show the safety video? It’s like a commercial and they tried to make it entertaining. Hub and I just rolled our eyes through the whole thing.

Lucky me, the little guy at the window seat kept his window shade open. So I pretty much had to crank my head toward Hub the whole flight. I clutched onto Hub as we took off, wrapping my arms around his arm so that I was pretty much attached to him. I did that almost every time I felt the plane bank, or there was turbulence, or we sped up or slowed down. I felt every single shift in the plane. Every single shift. I am so hyperaware of movement because of my vertigo and imbalance that I knew when the plane climbed higher or descended even a little. I tried to think of turbulence as pot holes, though that didn’t help very much (we had a good amount of turbulence as we ascended, then more during the length of the flight). I cranked my music and tried to sing along in my head. I tried to read but the book was terrible and I couldn’t concentrate. The woman in front of me put her seat back–of course–so I put my table tray down and just rested my head in my hand and my forehead against the back of her headrest (against the tv screen, technically). I had the little air blower from the ceiling on high, so that blew down the back of my neck and kept me relatively cool. I swayed my head to the music, tapped my fingers, and intermittently clutched at Hub as we flew. With the time zone change, I was having trouble tracking how long until we were supposed to land. At one point I was all happy because I thought we were going to start descending any minute, only to realize we had almost forty five minutes left. That was just less than half the flight. UGH. So back to the music I went, swaying and singing silently.

The pilot announced we were going to start descent, so of course I plastered myself to Hub, even though we still had twenty minutes before landing. I closed my eyes and just tried to ignore everything except the music I was blasting in my ears. The landing was hard and fast, and it felt like it took forever to slow down and stop. Everything was so loud…louder than I remembered from all those years ago. It took forever to get off the plane, because as I mentioned we were in the very back, just four rows from the bathrooms. It was interesting to watch the debarking process, because people were really patient and allowed other passengers to get off in order. All except ONE GUY who was sitting behind us who had jumped up as soon as he could, and instead of letting us out like he should, he pushed his way right up along our seats so Hub and I (and our seatmate) couldn’t get out in order like everyone else. SO RUDE, dude! I mean, really? How much faster were you going to get out by being an asshole?

Have you ever flown into O’Hare in Chicago? That mo’fo is HUGE. Walking to find the baggage area to get outside for pickup took forever. We used the moving sidewalks, too, but I was so tense on the plane and so squished into the seats that I was exhausted and in pain. It was kind of slow-going. But we had landed 30 minutes early (YES!) in comparison to the schedule, so we had some extra time to get outside. One of my brothers picked us up (along with some relatives coming in at the same time but via a different airline) and we were off to the hotel to meet my parents and change our clothes for the wedding.

Our flight out was an hour and forty minutes. The wedding itself, specifically, was thirty minutes long. Then we sat for ninety minutes in the reception room, as appetizers were circulated and the open bar, well, opened. I hadn’t eaten before flying (it was too early) and after we landed we went to the hotel. I had packed a tiny bag of gluten free cheese crackers, which I inhaled at the hotel (along with about six ounces of apple juice), but that was all I’d eaten all day. Unfortunately, every single appetizer was either breaded and fried, or had some sort of bread base (egg rolls, spanicopita, bruscetta), so I had nothing to eat again for those ninety minutes. I had two Shirley Temples and some water…and a few Hershey’s kisses that were on the table. That sucked. I was so hungry and I was getting a bad headache. Then the soup came out…but I can’t eat soup because it’s usually thickened with flour. But the waitress said they had some fruit, which she brought out for me and a few other people there who had allergies. That was some awesomely tasty fruit, ya’ll. 🙂 Then they served salad, which was good enough.

Luckily, my brother (it was my niece’s wedding) had arranged for a gluten free meal for me, which turned out to be pretty tasty. I was impressed because normally “gluten free” means plain and dry. But it was pretty okay, including a nice big baked potato, which I scarfed down like I was starving. They ended up bringing out chocolate mousse next, but I was too worried about being sick on the flight home that I didn’t eat it. Before we knew it, Hub and I were retrieving our bags from the car and changing back into our travel clothes in order to leave for the airport to fly home. When we went in to hurry around and say good bye, they were just serving the wedding cake (which I couldn’t eat anyway) along with what looked like ice cream or custard or something, and maybe some other small desserts. I’m not sure because we were already a few minutes behind schedule and it was more important to me to say good bye to my family than to see what we were missing dessert-wise. Then we were gone, on the road to heading home.


Tags: , , , , , , , , , , , , , ,

1 degree of madness

This recovery has not gone well at all.

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

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

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

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

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

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

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

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

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

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

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


Tags: , , , , , , , , , , , , , , , , , ,

Don’t pity me

I’m doing that just fine all on my own. Bleh.

Seriously, this is the first day I’ve been able to concentrate even a little bit. Prior, I was feeling very foggy and dizzy, and like my eyes wouldn’t focus. It was pretty horrible. Thursday I was trying to be a good girl and eat protein, so we had some deli turkey in the house in preparation. Turns out there’s something on there in the gluten range (maybe the seasoning? we don’t think we’ve bought this meat before, it was fresh-made at the store) that was affecting me and I spent most of Thursday suffering from hot-face, which made me miserable. It wasn’t until after I’d had some for dinner that I realized it was probably the turkey and I had to just wait it out. I didn’t start feeling that going away until sometime Friday mid-morning. Meanwhile, my sleep has been close to nil. That has been kind of horrible because it aggravates anxiety big-time, as all us anxiety sufferers know. My PVCs remain annoying…

I’m in some mild pain, but taking ibuprofen twice a day, just to help speed healing, I hope. Friday the doctor’s office called to check on me and the nurses warned me to be very aware of blood clot symptoms, especially with the weekend coming. She told me to not wait and go to the ER if I felt I had symptoms. So now I’m spending the majority of my time worrying about a blood clot. Fan-fucking-tastic. And apparently this is an issue for MONTHS after a surgery. So my leg is bothering me and it’s kind of freaking me out, but I am trying to remind myself that it’s probably a muscle ache and maybe must my knee hurting (which is normal for me). I’m afraid…there’s so much going on in my body, I have no idea how to identify what is normal and what is not. My heartburn is pretty bad (with accompany nausea!…yay), even though I’ve gone back on my regular digestive enzymes and probiotics…they haven’t really taken over yet. So that means I’ve got pain in my chest which radiates to my arms and back. And I have to decipher that as being different from being short of breath and in pain which could be a clot my lung (versus in the leg, of course). This has not been a good experience for me…I’m sure T is thinking “Ooooh, exposure therapy” but I’m thinking OMG how am I going to get through this?

I feel very split up about all this…trying to realize I had major surgery and still feeling like I’m supposed to be active to help heal. They’re all telling me to listen to my body, but my body LIES to me. So how am I supposed to know how much to rest and how much to do? I had major surgery and yet they sent me home five hours after. Which is it? Major surgery and rest, or get up and move? I’m FINALLY able to stand up and sit down without groaning from the pain and stretch, but it’s still uncomfortable.

Eating is difficult because of the nausea and the heartburn. I have no appetite, but I know without food I won’t gain stamina or energy. I’m trying to drink but I’m NEVER a good drinker so I’m sucking with that, too. Which apparently could lead to more potential blood clot issues. So much fear in my body at the moment. I told T when I had my phone appointment on Friday (which I could only talk for half an hour, I was so out of it) that I feel like I’m in the midst of anxiety even though I didn’t feel ANXIOUS. She said it’s my body responding to the trauma of the surgery…and to just try to use my tools even though it’s not really “anxiety”.

My head feels full and pressured. I have a headache (while I’m taking 800mg of ibuprofen…wtf is up with that?) and I’m so tired all the time. I want to be past all this NOW.

On top of all that, Hub has a really bad cold that came on Tuesday night. I’m SO lucky that I haven’t gotten sick yet, even though he’s feeding me and getting me drinks. It’s really really sucky, though, because he’s not touching me. No hugging, no kisses, no rubbing my back or my hands or my arms. No comfort. It’s a really big loss for me… I want so much to be soothed and because we’re trying to keep me from getting the cold, I feel bereft and alone.

Like I said, I’m doing a find job of pitying myself. And now the eye floaters are back, so I’m done here.


Tags: , , , , , , , , , , , , , , , , , , , , , , ,

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.


Tags: , , , , , , , , , ,

A driving impression

At the height of my chronic illnesses, and for years after, I did not drive. One of the things I live with on a daily basis is vertigo and imbalance. For many years I had noticeable imbalance every single day, with the concerns of true vertigo in the back of my mind. So since I worked from home, I did not drive. If I went somewhere it was with someone else and that was completely fine with me.

Prior to that, I’d been driving since I was sixteen and was very independent. I loved driving, especially in my convertible Mustang with the top down in the lovely spring and fall seasons. But I gave up the Mustang at some point–it was in bad shape anyway–and we purchased our first SUV. I loved driving the SUV, though not as much as the Mustang. Then it ended with the onset of my imbalance and vertigo issues.

In the last 18 months, I’ve taken to driving here and there on an as-needed basis. Mostly I would follow the hub to or from a location when we had to leave a car somewhere. Last fall, I started driving myself to my therapy appointments, to prove to myself that I could do it. Even when I felt mildly crappy, I drove myself. Even when I felt anxious, I drove myself. Only when I started to go downhill physically and mentally (thank you very much, Prilosec!) did I fall back on having someone drive me to my appointments again.

In the last couple of weeks, I’ve begun driving to my therapy appointments again. One day it rained, snowed, was windy, and sleeted all on the same day and all during my drive to-and-from, and I still managed to drive myself. I’ve even stopped and gone shopping on my own, twice. These are big things for me…not so much because I couldn’t do it before, but because I didn’t. I’m feeling mostly confident that I won’t have a vertigo or imbalance episode while driving (which could have injured others as well as myself), so I’ve been getting out on my own. Last week I also had to drive to my PT appointments because my aunt was in the hospital and my regular chauffeur (my father) has been staying with her. I don’t love driving myself to PT because when I come out sometimes I’m really tired or my arm or shoulder hurt, and I worry that I might not be able to handle the car. But the drive is generally 15-20 minutes, and I can work it out so I’m on back streets almost the whole way, so I’ve sucked it up and done it.

I tried to explain to someone (I forget who) that I didn’t miss driving when I wasn’t driving. I missed the independence, and the feeling of independence, but I was okay with not driving. But when I am physically driving, I enjoy it. Of course, my drives are in the 15-20 minute range, and I have no traffic to deal with, so that does help!


Tags: , , , ,

More of me

You can read my profile page here. That’s a short and shorty about me. But I wanted to introduce myself a little more.

I’m in my early 40s, and I’ve been married to my husband since 1999. We have been together since 1992. I spent the beginning of my career as a computer network administrator, then when I first got sick in 2000, I started my career as an author.

In late 2000, I began feeling sick and run down. My job was pretty high stress at the time, so I originally thought that I was “burned out” from working in a high-stress, fast-paced job. I suffered from walking pneumonia during this period of time, which kind of started out my illnesses. I became unable to work, so I took short-term leave from my job to try to recover. Unfortunately, my health continued to go downhill and my employer could not hold my job open.

I began making the rounds to every specialty doctor you can think of, trying to figure out what was wrong with me. I suffered from extreme fatigue, body pain, stomach pains, muscle pain, headaches, jaw aches, and of course, anxiety over all of it. At the time, fibromyalgia was barely coming to light, and many doctors didn’t believe it even existed. We weren’t sure if it was what I had, but the symptoms seemed to match. After going everywhere else, including a neurologist (who sometimes diagnoses fibromyalgia), I found a local neurologist who specialized in Fibromyalgia and chronic fatigue syndrome. He didn’t take insurance, but by this time I was desperate to find out what was wrong with me.

The neurologist told me I did not have fibro or chronic fatigue syndrome, but instead could be categorized under the heading of “myofascial pain syndrome”, now called chronic myofascial pain. It has some similarities to fibro, but is inherently different. Fibro has tender points and generally the pain is all over the body. Myofacial pain syndrome has trigger points, and it tends to be more localized to certain areas. The neurologist coudn’t be sure, but it’s possible I had a virus that weakened my immune system, and then my body wasn’t absorbing b12 or iron, so those stores were impossibly low in my body. Without those two essential vitamins and nutrients, my muscles could not repair themselves, and so I got weaker and weaker, and the myofascial pain got worse and worse. The treatment was iron and b12 supplementation, plus physical therapy to help rehabilitate my muscles. I was on that treatment schedule for over 9 months. Since then I’ve been on and off both supplementation and PT in order to keep up with my myofascial pain syndrome issues.

The neuro also found that I had TMJ, and sent me to a dentist who specialized in TMJ. She was able to help me a lot with the headaches and jaw pain by fitting me with a mouth guard to sleep in. I chewed the hell out of that first mouth guard, but after that was never able to get one that fit the same, unfortunately.

In 2003, I got sick again. I began to get dizzy spells and my anxiety peaked again. I couldn’t get out of bed without feeling like I was falling over. Even in bed, I was dizzy and unbalanced. There were times I worried I would fall out of bed when I was laying down! We began the rounds to doctors yet again, trying to discover what was wrong with me this time. Most of them had no answers, just like the first time around. After a lot of my own research and a final visit to a specialized neurologist whose work with vertigo was fairly renowned, they diagnosed me with migraine associated vertigo. Most people who have migraines get visual auras where they see spots or light, or have some other visual disturbance. Many people who get migraines have pain in their heads somewhere. For me, my “aura” was vertigo and imbalance, and I had no pain (silent migraine). The only treatment was medication, and since I was not interested in that, they gave me some balance exercises and told me that it was possible my brain would compensate for my new “normal”…the imbalance I was living with. And truthfully, that has happened to a point. Over the 10 years I’ve lived with this issue, we’ve come to realize that some of my “migraines” are triggered by food and some are triggered by seasons (potentially, seasonal allergies). More recently I’ve been dealing with bouts of positional vertigo, but they have so far been minor and I can manage them.

In 2010, I began dealing with a new issue, where I was having extreme facial flushing to the point that I needed ice packs and my ears would turn bright purple. I also felt agitated and highly anxious…jittery. It took quite some time to realize that it was only happening after eating, so I began to suspect a food allergy. At the time I was eating a lot of couscous, which is a pasta product made from semolina wheat, and I began to narrow down the “reaction” to wheat. I decided to go gluten free, which was the easiest way to avoid wheat at the time. Now I know it’s a wheat allergy and what I was feeling was as close to a histamine reaction as you can get. If I go out and accidentally have wheat in my food, I know it within 10 minutes. It’s so strange, but after searching the internet again, I’ve found other people who have similar reactions to wheat and/or gluten.

More recently I’ve found that I am carbohydrate sensitive, so I try to keep an eye on how many carbs are in my meals, without really “restricting” myself. It’s so much fun trying to figure out what I can and can’t eat! I am lucky, though, that my food-related issues are not severe and do not result in emergency situations. However, the thought that it might progress to that is a source of “food” for my anxiety.


Tags: , , , , ,