RSS

Category Archives: anxiety

Health insurance fiasco

I’m still not doing well. I’m posting from my iPad because I have to vent and I don’t see my therapist for another week.

We get health insurance through Hub’s job. Always have…and we are picky about the jobs he takes because of my health issues. We always try to get a PPO so I can pick the doctors I see, since I have complicated issues. In the past few years, the job offers that Hub has received have come with progressively worse health insurance options. He turned down two jobs because they didn’t offer any PPO (or POS) plans.

The company he settled on this past December offered a PPO with a 500$ per person in-network deductible, and 1500$ per person out-of-network deductible. That’s high for us, but he was able to negotiate a higher salary to cover the extra expense. Sadly, we are paying a LOT for this plan…the other plans were 1000$/3000$ plan and a 1500$/6000$ plan. Per individual, remember. That seemed outrageous.

The company’s policy renews August 1st, and we just got the new plan info. They are offering a catastrophic plan, and the 1500$/6000$ plan. That’s it. And for the privilege of getting the non-catastrophic plan, we are paying $70 more a month than we are now. We are getting less coverage, higher copays, higher drug copays, higher deductibles, all for more money.

And even better, the company is blaming the increase in costs and reduction in options on the employees using their health insurance this past year. Literally, this is what they just said during the open enrollment meeting.

What. The. Fuck.

As if we aren’t stressed enough. As if we didn’t hate the current plan…it already gives me distress to go to the doctor and get tests done when needed. It already upsets me to go to therapy and see that money going out of our account. Six thousand dollar out-of-network deductible.

If it didn’t make me feel a thousand times worse I would be sobbing hysterically.

Advertisements
 

Mammogram scare

Because I had endometrial cancer, I have to be extra vigilant with my mammograms. Apparently there is an increased incidence of breast cancer and colon cancer in people who have had endometrial (estrogen based?) cancers. So I try to be vigilant since I started getting mammograms.

I normally get my mammogram a day or two after I’m eligible. I had this year’s appointment set, but the morning of I woke up feeling really bad, and I ended up with vertigo episodes. So Hub called and cancelled and I rescheduled two weeks later. I went to the same place I always go to, only now I was pushing a rollator for balance in case I got a spin while there.

The technician was very nice and the tests went as expected. You spend more time waiting for your appointment than the actual (2d and 3d) tests take. I went home feeling I had done my duty and all was well. Only I got a call several days later from my gyn-oncologist’s office (his nurse) saying they found a new mass that they wanted to do more testing on. I had to set up a diagnostic mammogram and an ultrasound.

AFTER I freaked out for several days, I started looking at the reports and realized that I have (what I had been told five years ago was) a cyst where they thought they saw a mass. Because I’ve lost so much weight, I think the tech was a little overzealous grabbing my looser skin, and she got the cyst all squished up onto the plate for the mammogram. But I wasn’t taking any chances, so back I went for the follow-up testing. The new tech put a little thingy on my cyst when I pointed it out and took their diagnostic pictures. Then they sent me to the ultrasound room and the tech did her thing in there. The radiologist came in to see “live” testing and pronounced it “probably benign.” WTF? He 97% sure it was a benign fibroadenoma, and was nothing to worry about. But now he had ME freaked out again, so I set up an appointment to see my breast surgeon (from the last time they “found something” which thankfully ended up being nothing). When I got in to see her, she looked at the films and reports and then at me (it’s next to my boob in the area they call the axilla) and said “that’s a cyst.” I said “why did the radiologist call it a fibroadenoma?” She said, “they are trained to look for breast issues, so that’s all they think about.” She told me if I wanted to have it removed and tested, she would do it, to have 100% certainty that it was a cyst and nothing major. I said “YES PLEASE” so I didn’t have to think about that 3% is it or isn’t it? Or that something was hiding behind the cyst that they couldn’t see on the mammogram because the cyst was in the way…

I schedule the out-patient surgery (local anesthetic), but then ended up with all that shit about the Reynauds and artery issues and so we postponed. I’ll need to reschedule that soon.

So hopefully this is another year gone of mammograms with nothing coming of it. Except more stress and anxiety. I’m having a lot of that these days.

That’s it for now.

 

Tags: , , , , , , ,

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: , , , , , , , , , , , , , , , , , , , , , , , ,

Links for help on a day like today

If you are struggling today (or any day)…reach out for help.

 https://www.facebook.com/AFSPnational/photos/a.69058467304.61653.27817332304/10155670794262305/?type=3&theater 

And also, this article is helpful:

http://mashable.com/2017/10/02/las-vegas-shooting-emotional-coping-mental-health/

 

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

Calgon take me away

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


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

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

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

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

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

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

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

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

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

 

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

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.

 

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