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Category Archives: weight

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.

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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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Whole30 end of days, or…?

So yesterday was our official 30th day of Whole30. Hub and I had several conversations over the weekend about what we are going to do, one of which was kind of an argument. During which Hub told me he never wanted to do this, that I made him do it.

WHUT.

I originally started discussing this with him weeks before we started, and he said if I was going to do it, he was going to do it with me. He said he had hoped it would break some of his bad habits and help him get on track to eating in a more healthy fashion. Now he says this was all my doing and he never wanted to be involved…and he was angry that I seemed to be “bait and switching” him in the last week of the program. In that, I started asking him if he was thinking of how he was going to maintain any of the new habits he had created or if he was going to go back to his old habits. He said, “You said this was only thirty days and now you’re acting like we’re going to eat this way forever!”

*sigh*

I said I wasn’t saying that at all, only that after all the hard work he went through to make all these changes, why would he let that all go and fall back into all the old habits he had. As addicted to sugar and carbs as he was, I was SHOCKED at how well he did getting off all gluten grains and sugar. If that was so successful, why would he go back to eating and drinking all that sugar? Yes, if you want something, eat it consciously, knowing what you are doing. Not mindlessly because that’s what you’ve always done and without any enjoyment of the actual thing you’re eating. I told him, if I want ice cream, I’m gonna eat it. But I’m gonna do it when I want it, not every time we pass an ice cream shop because it’s RIGHT THERE.

He was really mad, but I’m not entirely sure he was mad at me. When we went to the store the next day, we were looking for sausages for him and the ones we saw had sugar in them. I asked him which flavor he wanted and he said no, he didn’t want any of them because they had added sugar. So after all that argument and him blaming me for everything, he’s decided to pay attention to what he’s eating still? I really had hoped this would allow him to modify his eating patterns, not that he give everything up altogether, you know? It’s where I wanted to be, so I thought he would feel the same way.

He said he doesn’t want to have to think about food choices like this. That it’s too hard. I told him I live like this every day because of what I have to eliminate from my diet. That it’s hard, but sometimes we have to do that kind of thing. He’s never had to. Even with cheese, he can eat it to a point, but in excess it gives him stomach issues. So he just eats it and gets sick sometimes and doesn’t get sick other times and oh well! He has diabetes, but he told me it “wasn’t that bad” on a scale of diabetes. Ignoring the fact that he’s on three different diabetes medications to keep him below an 8 A1C…which he’s only a sneeze below. And even the medications are barely working, as his A1C has been rising until this last blood test, where it fell 3/10ths of a percent, to like 7.6. Maybe if he were able to change his eating habits, he’d be able to get off one or two of the meds and find a better way to handle the diabetes. But he doesn’t care and isn’t interested. Or is he? I don’t fucking know anymore.

I told him I’m not going to tell him what to eat. I didn’t do it before this program and I’m not going to afterwards. I thought he wanted to make a change since he was willing to join me in the program, but now I’m not sure. And all I can do is pay attention to what I’m doing and hope things work for me.

Let’s NOT EVEN discuss that he lost 10 pounds in the 30 days and I lost NOTHING. Jerk.

We’re supposed to be considering re-introduction to the food groups we eliminated. I’ve been having some stomach issues the last two days–despite not changing any of my freaking foods–so I’m waiting at least a day or two before making any re-introductions. I don’t want to go into the “test” phase already f’d up.

So I lost no weight, no mood differences, I don’t have any increased energy, my stomach and digestion was no different, I didn’t sleep any better, and my overall pain did not change. Pre- re-introduction. Yay.

 

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Whole30 week 3 done

Blerg.

I don’t feel any differently than before I started, except today I had a weird snack-attack. I’m not sure what it stemmed from and I tried to make my way through it by sticking to the “program” and attempting to eat a “small meal” rather than an actual snack. Then I got partway through the food and I was feeling uncomfortable in my stomach. So I put the food back in the fridge for later, but at the moment I still feel kind of full and bloated. Not sure I’ll be eating dinner or not…Hub is out for most of the evening doing some work stuff, so I’m on my own.

The “program” says that by this time I should be feeling “Tiger’s blood” and be full of energy. Big N-O on that. And despite the “program” purporting otherwise, I have no reduction in my aches and pains…and in fact I’ve gotten a new foot pain that has bothered me enough that I asked my massage therapist if she can squeeze me in tomorrow for an hour to take a look…or a feel, even.

We’ve continued with our food planning, but this weekend we didn’t do a big cook like the previous two weekends. Of course we had just cooked a whole chicken Saturday night, so maybe that counts. Plus, it’s meatloaf tomorrow night, which will give us a bunch of usable leftovers.

Although we are not supposed to look, I have been keep track of my weight. Initially, I lost three pounds the first week, but I’ve since put it back on. Not really sure what that was about. Lots of people said they lost weight, even though the “program” says it isn’t really for weight loss.

I don’t sleep any better and in fact have struggled to fall asleep during these weeks. Some of that might be the excess pain I’ve been dealing with. I just can’t get comfortable these days. It sucks.

That’s pretty much it. Today’s been a crap day…PT was a bitch for my shoulder. Despite my increased functionality and range–to some extent–the pain has not reduced. It’s very frustrating. The PT keeps telling me I’m improving and doing well, but my pain is still there and so I feel kind of defeated.

Blerg.

 

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Cardiophobia

cardiophobia

Cardiophobia is defined as an anxiety disorder of persons characterized by repeated complaints of chest pain, heart palpitations, and other somatic sensations accompanied by fears of having a heart attack and of dying. Persons with cardiophobia focus attention on their heart when experiencing stress and arousal, perceive its function in a phobic manner, and continue to believe that they suffer from an organic heart problem despite repeated negative medical tests. In order to reduce anxiety, they seek continuous reassurance, make excessive use of medical facilities, and avoid activities believed to elicit symptoms. The relationship of cardiophobia to illness phobia, health anxiety, and panic disorder is discussed.

I had no idea. Did you even know this was a thing?? (edited to add that personally, I don’t actually make “excessive” use of medical facilities…but I do think about how often I go to the doctor and I think about how it would be to go to the doctor every time I felt health or heart anxiety)

I did a bad thing and I googled something semi-medical. I googled “I am afraid of exercise.” And lo and behold, there are people out there just like me, who are afraid of exercising because of cardiophobia. There are other reasons for fearing exercise, but I was mostly focused on the cardiophobia because that’s my issue. Cardiophobia is the main culprit of my health anxiety, although these days I do have some mild cancer recurrence fears, too. By the way, I survived my google espisode and I REALLY only looked at cardiophobia postings…I did not stray or fall down any medical google rabbit holes. Go me.

I had my appointment with my cardiologist this morning. I have mentioned this before, I believe, but I like this man because he’s non-judgemental about my weight and talks bluntly yet kindly when we meet. He listens to what I’m saying before starting in on any exam. He even listened to me when I said I was afraid to exercise because of my heart, and that I was working on it in therapy. He did an EKG which came out fine, then said we hadn’t done a stress test in many years (not since I first saw him probably in 2012 or 2011)…and he said we could do it right away if I was amenable. I said yes, of course, because no time like the present. The stress test was with an EKG and blood pressure cuff hooked up to me, but no echocardiogram like Hub had a week or two ago. The nurse said they only do echocardiograms when there’s a potential structural defect, which the doctor was not concerned about.

The stress test was hard for me. At one point, the BP cuff was so tight (I hate when it starts to tighten, stops, then starts again like it’s starting over…) that my entire right arm from cuff down to my fingers was beet red. I told the tech that the cuff was way tight and she reset it. But those stress tests make you go fast and at an incline on the treadmill and that’s hard. It was already hot in the room and I’m pretty heat intolerant. When they went from high speed and full incline to cool down, I got woozy and I told them. The nurse said that happens and it’ll go away, which is kind of did. Except for the fact that I am having a lot of imbalance issues (like being on a boat rocking up and down) these days, so it didn’t fully go away.

They unhooked me and gave me a cup of water, then the nurse left to consult with the doctor. When she came back, she said they saw no blockages and no abnormalities on the test results, so I was free to go home. Hub was waiting in the waiting room and he helped me out to the car because I still felt overheated and wobbly.

Do I feel better? I’m not entirely sure. But at the very least, when I go in to see T on Friday and we start working on my specific health and exercise anxiety, at least I can say that I was cleared by the cardiologist. Unfortunately, I’m dealing with heartburn again, which had mostly been under control up until about two weeks ago (a lot of this pain is probably the heartburn crap, which I think started out “silently” and is now just getting worse and worse. I’m going to get back onto my digestive enzyme regimen, with the exception of having to find a new digestive enzyme pill because the previous stuff I was using had to be purchased through a practitioner and the nutritionist I was seeing for it refuses to respond to any of my inquiries. I think she’s pissed that I stopped coming in for appointments.

Anyhoo, I’m cleared by the cardiologist. I go in to see T on Friday for hypnotherapy and Neuro-Linguistic Programming. NLP’s creators claim a connection between the neurological processes (neuro-), language (linguistic) and behavioral patterns learned through experience (programming), and that these can be changed to achieve specific goals in life. Apparently NLP is something that hypnotherapists can try to use to help along with the hypnosis. I don’t know squat about it, but we’ll see how things go.

I’ve already had one hypnotherapy session, just an induction where she wanted to see if I could go into a hypnotic state. We tried again on the last session, but I was so mired in grief that I basically burst into tears mid-hypnosis and that was the end of that.

I’ll talk about hypnotherapy in another post soon.

Hub and I started and stopped acupuncture, but are planning to start it again because we both felt it was somewhat helpful for certain issues. We were supposed to start again this week, but my cardiology appointment screwed that up. Hopefully next week.

There’s today’s update.

 

 

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Another detour

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

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

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

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

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

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

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

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

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

 

 

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Decide to stop

I wish I could. I wish I could just decide to stop worrying. If I could even just decide to stop worrying about ONE THING. I wish I could.

I’m nauseous a lot these days. I thought it was the hormones that did it, but the pills are over with and so is my cycle. Why am I still nauseous? My stomach is less than happy, but that’s not terribly new for me. Today I’m sitting here waiting for Hub to come downstairs to lunch and I get jaw pain. I feel nauseous and I get jaw pain. Past couple of days my arm has been bothering me. My left arm. So we all know what those things mean, right? My heart. There’s got to be something wrong with my heart. I’ve been to the cardiologist, and he’s told me he sees nothing wrong (other than these fucking PVCs). It’s a recent visit, so what could have changed between then and now. Not much, I suspect. But still, my health anxiety ramped right up like it was never gone. Not that it was GONE, just that I’ve worked really hard to try to deal with it. I haven’t yet worked myself into full panic mode here, but that doesn’t mean feeling the way I’m feeling now is easy. It sucks.

I have this imbalance issue. If anyone has ever been on a boat and then when you get back onto land, you feel like you’re still on the boat. The ground under you feels like it’s moving and uneven. You walk like you’re drunk sometimes. For most people, their balance system readjusts soon after being on land (soon ranges in length of time, but for most people their system DOES readjust). For me, I had no boat ride, I just got the imbalance. It never really goes away, but sometimes it’s less noticeable than others. And sometimes it’s way more noticeable. Since the hormone jump, I’ve been dealing with it daily, walking down hallways and holding onto the walls. Always touching something nearby to ground myself from falling over. I don’t usually fall, but it often feels like I’m going to. It also makes me feel weak and out of control of my body. It’s not fun. This isn’t a health anxiety thing…I know what this is (or at least what the doctors tell me it is) and I’ve lived with it for 15 years. But like I said, sometimes it’s way less noticeable. Right now, very noticeable. It affects a lot of what I do and how I do it. This is really part of the reason I stopped driving, for fear that this imbalance turns into vertigo (which it has a couple of times) and for fear that the imbalance will affect my ability to react while I’m behind the wheel. I have driven the past couple of weeks, but not much. I would really hate to lose that accomplishment.

I feel like I’ve fallen backwards, both in how I feel physically as well as mentally. I know how clearly one is connected to the other. It’s easier to feel good mentally when you feel good physically. My challenge is how to disconnect the two and learn to feel good mentally even when my body doesn’t play along.

Does anyone else rock forward and back when they feel anxious? Or jitter their leg(s)? I have always rocked to try to distract myself from the anxiety. The leg jitter? That’s more to get the excess energy out, I think. I’ve been doing both more often, which is another sign that my health anxiety is getting the best of me.

Why do I worry so much about my heart? My parents and maternal grandparents have (had) no heart issues. My father’s parents both died of heart problems, but it was either when I was very young (too young to understand) or before I was born. I don’t know why the focus is there. I’ve always been overweight and I wonder often if I feel like I’m punishing myself for being overweight by worrying about my heart. Like being fat equals dying of a heart attack. I don’t know. I wish I could figure out how to forgive myself for being fat to see if that would help me let go of the health anxiety. But again, that’s something I am working on…

 

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