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Category Archives: medications

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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Calgon take me away

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


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

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

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

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

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

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

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

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

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

 

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Viral return (not)

Friday of Father’s day weekend, I was back in bed shortly after lunch. It was reminiscent of that time period starting in February and lasting through to May, when I was then diagnosed with a sinus infection. At the time I was diagnosed with the sinus infection, I began to wonder if the “down” period I’d been having–which was being blamed on a virus by my doctor, and grief by my therapist (and me)–was actually the result of the sinus infection. Shortly after the anti-biotics started kicking in, the fatigue started going away. I was not splayed out on the couch all the hours I was “awake”, and I wasn’t falling asleep in my food. So I came to the conclusion that it was the sinus infection knocking me out, and I went about my life.

But the 16th, it hit me just after lunch and I ended up going back to bed shortly after eating some soup. I had plans to go out with my brother and his new girlfriend (our first meeting with her) Saturday night, but the way I’d been feeling on Friday, I wasn’t sure I could make it. I spent most of Saturday in bed again, feeling exhausted but not sleeping. It was so frustrating. I was nauseated almost all the time, felt off-balance, weak, and just plain worn-out. I hauled myself out of bed to go out to dinner with Hub and my brother and his girlfriend, but basically felt like crap all evening. Sunday was Father’s day and we were supposed to go over to my father’s for a cookout. I stayed in bed most of the day with the hope that I would have enough energy to make it through the evening at Dad’s. I didn’t do much of anything once we were there, I ate very little (which was how I’d been eating since I started feeling shitty, because the nausea is so bad that everything looks and smells gross…), and we stayed only long enough to eat, chat a bit, and that was it.

Monday morning I made an appointment to see the doctor again, but instead of staying in bed, I tried to go back to my normal routine. All the times I’d been in bed, I wasn’t sleeping…I was just lying there thinking of how tired I was. It felt stupid, so I decided to just stay awake in my recliner and try to act as normal as possible. As the day went by, I decided that I needed to get back to my cardiologist. The extreme fatigue and nausea and weakness was enough to spur me to make an appointment with him, even though I doubted it was a heart issue. I didn’t want to wonder, and it’d been a year since I’d last seen him. I decided that there was no reason for me NOT to go see the cardio, so I made the appointment.

As it turned out, I had both appointments on the same day, one in the morning and one in the afternoon. I saw the cardio first, and even though there was a scheduling snaffu, they saw me anyway. The doctor did his regular exam, talked to me for a bit, reviewed my tests from my primary earlier in the year, and did an EKG. He said he saw nothing to suggest there was a heart issue, that my test and exam were both normal. But, he said, since I’d had the stress test last year, he suggested I go ahead and get an echo-cardiogram to round out the cardiac testing. So they set me up with an appointment for this week (tomorrow) at their other office, which had an opening sooner than the local office.

I went in to see my primary that afternoon. We talked about how I was feeling, then she did HER exam. She asked if I was getting the same *smell* as when the sinus infection was diagnosed last time and I said no. I don’t think I am, though sometimes I get the phantom idea of the smell… But since it’s not consistent like it was last time, I think I’m imagining it as the memory of what it was. Without any other options, my primary suggested it might be allergies. Her thought was to try allergy medications to see if it made me feel better, and then to consider seeing an allergist. Last time when she didn’t know what was going on, it was as virus. This time, allergies.

So I said THANKS, gathered myself and left the offices. I did make an appointment with an allergist recommended by my cousin, who is a pediatric allergist and whose husband is allergic to everything and loves his allergist. Sadly, they can’t see me until mid-August. So I have to decide what to do between now and then.

Although I am still tired, it’s not as all-consuming as it was that Fri-Sat-Sun, and I’m using a homeopathic nasal spray (with capsacin and eucalyptis) to try to keep my nasal passages open and draining. So if there is a potential for a sinus infection brewing, I’m at least keeping the sinuses draining instead of stagnant. It’s an interesting spray, with not as much burn as I’d expected. It does seem to keep my sinuses open, so that’s good.

Prior to all of this, I also saw my orthopedic doctor about my left shoulder. I can’t raise my arm above shoulder height, and moving it in certain directions is incredibly painful. He took an xray, did a physical, and pronounced me with an impingement. I gotta get in to see the physical therapist to start working on it. He said if PT doesn’t work, it’ll be a steroid shot. Ech. I haven’t made an appointment yet because I’ve been run-down with everything else.

July is going to be mobbed. I have my 2 year cancer check, which will include a CT scan after my visit with the gyn onc. I also have a trigger point appointment, I need to get my hair “fixed” for my cousin’s wedding, and…well, I’m going to see a psychic-medium about my Mom. And then my cousin’s wedding. Plus we need to find a dog-sitter for when we’re at the wedding. I’m not sure when I’m going to fit in PT. Ugh. Of course this arm-thing has been going on for several months, so it’s not like I don’t know how to deal with it…

Did I mention the wedding at the end of the month is a FORMAL wedding? At a local Four Seasons fancy-shmancy hotel. I had to find a formal gown (A GOWN), I had to find shoes (I hate shoes), and just tonight we went out so I could get the dress altered because it’s too long and I hate the sleeves. But I liked the rest of the dress and it was on sale so I bought it and just told the seamstress to hack off the sleeves.

AND I’ve been helping my father clean some stuff out of his house for donation. Which means I was also cleaning some stuff out of MY house for donation. Hub and I stopped tonight and dropped off a ton of sheets and blankets (and 2 twenty pound boxes of dog treats) at our local animal control/shelter.

I need a nap.

 

 

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Bad bactrim bust

So here’s the history on my sinus infection and the antibiotics I was prescribed.

I’ve taken 8 days of bactrim, 2 pills a day. After the 2nd full day, I have been able to take the pills without having Hub sit with me for an hour. Today I took it after he left for work so I was home alone! I have four little shitty pills left in the container. In addition to all the stuff I’ve previously talked about–including HORRENDOUS heartburn/reflux–I’m now getting itchy. Mild but diffuse. My head, my arms, my back, my legs, my face, my hands, my ears…all little creepy crawly itchy spots. No rash, thank goodness, but itchy.

The heartburn has given me pain in my stomach in addition to chest-heartburn pain, throat burning, inflamed throat-feeling, and it has given me the GERD cough.

I called the doctor’s office twice, and both times I pushed the button to “speak to a staff member” and both times I literally let the phone ring for 3-4 minutes before hanging up. I left a message for my doctor in my online portal, but sometimes they don’t respond to that for a day or two. I ended up calling back and pressing the button for scheduling. The woman who answered said they are really busy (great excuse) but she took the message for me and forwarded it to my doctor’s office. She said either the doctor would call me back or her nurse would.

I do not want to take another pill. I’m concerned this is the beginning of an allergic reaction with hives and the whole schmear. As it is, it’s going to take 3-4 days for the medication to get out of my system…I could possibly still get hives or more itching during that time. The problem is, I don’t want to  have to start over with another antibiotic. Bleh. I’m crossing my fingers that the doctor says 8 days is enough for now and to see how I feel in a week or two.

The smell SEEMS to be abating somewhat, but it’s not GONE. I hope it gets gone because it’s still really irritating. I’m half concerned that I’m getting used to the smell and won’t be able to tell if it’s really gone or not.

SO the doctor’s nurse just called me back. She asked if I had a rash or hives with the itching and I said NO. She said that itching is a side effect of bactrim, and as long as there’s no hives or rash, I can try to finish the last four pills. She said that an actual allergic reaction would include hives or a rash, versus just itching. She recommended benedryl to help with the itching. I don’t take benedryl–or anything if I can help it–so I haven’t decided what to do yet. I haven’t had itching overnight, so I might try to take another AB dose tonight and see how it goes. I mean, I only have FOUR PILLS (two days) left, I don’t want to start all over with a new course of antibiotics if I don’t have to.

But maybe I’m going to ask them to put bactrim on my no-no list from here forward.

 

 

 

 

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Bactrim blues

So I’ve taken six pills so far for what my doctor diagnosed as a sinus infection.  I wanted to make note of what has been happening with the bactrim, at least for my future reference. Here’s what my historical experience prepared me for:

Upon getting my ABs, I come home and go look up my blog post from when I had to take these particular ABs, and I apparently have nausea, bad taste in my mouth, and dry mouth (editing to add, and dry/itchy eyes near to the end of the course of ABs) to look forward to for ten days at least. Two pills a day over ten days.

I’m definitely getting a lot of heartburn/acid reflux. My appetite is nil and the nausea is there for sure. My stomach hurts almost all the time, but that could also be from the acid reflux/heartburn. What is also a bit distressing is that last night before dinner (after the 4th pill at 9:30am that morning), I had a really bad hot flush on my face and ear, and I had anxiety. I’m not sure if the anxiety came from the hot flush or from the ABs. So I took another pill this morning at about the same time as yesterday…and tonight the hot flush started again before dinner. I didn’t even wait this time, I just got a cold pack and put it on my face until I was pretty well frozen. I didn’t get the anxiety, but I also stopped the hot flush early on, so maybe I stopped the anxiety before it started.

There’s no discernible change in the smell issue, yet. I’ve been trying to use different essential oils to distract myself from the smell (I just realized I had some good oils downstairs I could use…brown sugar and vanilla!), but it doesn’t last long.

Last night we invited my father over for dinner since my brother (the one that lives with him) is out of town for several days. Then tonight we went out for burgers with him and my other brother. Tomorrow Dad’s going to the grocery store with us in the morning, basically because he’s tired of being stuck in the house alone. He and I talked about how hard it is to be alone in the house all the time (while his house-mate is out of town), and I told him how concerned I am about being alone when Hub goes away. I told him I might end up sleeping there at night and he said if I did then they would be able to help me with the dogs in the early morning hours. I said I’d let him know. I’ve been going out for walks every day and when I get to his house, I call him to tell him to send his dog into the yard with us…sometimes he comes out to chat at that point. It’s hard because I used to do this to go hang out with Mom…and it’s not as easy to find things to talk about with Dad all the time. But I’m trying t keep up with the walking outside, so if he wants to chat with me he’ll have the opportunity.

I’m really tired of feeling so crappy. I want to regain my energy. I want to move forward.

 

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What is that…smell?!

So I think it was Friday when I first noticed the smell. It might have been Saturday, it might have been Thursday. Initially, it was like, WTF smells funny? And I was walking around sniffing. Smelling my clothes, smelling my hair, smelling the blanket on the couch. Then I started thinking it was one of the dogs that smelled bad…because of course they do, they’re dogs. But no, this smell was not the dogs. And it wasn’t the Hub. I thought it might be an old bottle of shampoo I’d been using because honestly, I was smelling it everywhere I went.

I have a very sensitive nose. I think I’ve mentioned that before, either here or in comments elsewhere. I smell every-damn-thing. And there are some smells that just drive me crazy. This was one of those smells. I’ve spent hours trying to define it…it’s like smelling some hot, stale air that is being blown on you constantly. I briefly thought it was the fans on my laptop, but then I realized I was smelling it away from the laptop and even away from the house.

I changed my shampoo, I changed my clothes, I cleaned my hairbrush, I stopped taking the b12 pills that I’d started a few weeks ago…but I just kept smelling it. Sometimes it would go away, then it would randomly come back again. Then I realized that I had a weird taste in my mouth, too. When I wasn’t so intent on the smell, then the taste would bother me. So, like I should never do, I went to Google. I had trouble figuring out what to type in, but I tried a couple of different things and ended up with stuff like: medication side effects, tonsil stones (WTF), tonsillitis, sinusitis. I was fairly convinced that this was tonsil stones, mostly because I had no symptoms of tonsillitis and almost none for sinusitis. I’ve never had tonsil stones before and I couldn’t see any evidence of them, but seeing inside my own mouth is kind of difficult for me. So in effect, no matter what the diagnosis is, the SMELL was coming from me. BLECH. Hub swears he doesn’t smell anything (which the doctor later confirmed on her own behalf), but I SMELL IT.

As I’d mentioned, Hub’s insurance didn’t kick in until May 1st, so Monday morning I asked Hub to contact his HR department to get membership information so I could call my doctor’s office for an appointment. Unfortunately, she didn’t get back to us until late Monday night…and then I had a massage therapy appointment Tuesday morning that started before my doctor’s office opens (Tuesdays are late days for the dr’s office). After my massage therapy, I called the doctor’s office and got an appointment for the following day, which is today.

The doctor pronounced this as a sinus infection. She said my tonsils look like a sinus infection and the “smell” and “taste” symptoms are also signs of sinus infection. I have no pressure or pain, no green gooey or globby snot, just constant post-nasal drip (which I have from allergies) and the smell and taste issue. I’m walking around with this horrible smell in my nose and this yucky taste in my mouth…and now I get anti-biotics.

I HATE PILLS.

Ten days of 2 pills a day–one in a.m. and one in p.m.–which means I get to have pill anxiety twice a day for ten days. Yay. The doctor prescribed bactrim, which I took last year after my cyst issue, and apparently once before that I think for my post-surgery infection. I found this from last year’s cyst blog post:

Upon getting my ABs, I come home and go look up my blog post from when I had to take these particular ABs, and I apparently have nausea, bad taste in my mouth, and dry mouth (editing to add, and dry/itchy eyes near to the end of the course of ABs) to look forward to for ten days at least. Two pills a day over ten days.

I took my first pill about 90 minutes ago. About twenty minutes in, I had an anxiety “flash”…which kind of means I had that ripple of anxiety wash over me and I felt like something wasn’t right. But Hub was with me, and I told him, and I went on trying to distract myself for the hour post-pill-taking. My mouth still feels weird, but I suspect that’s the yucky taste in my mouth bothering me. I’m feeling pretty relieved because Hub says he’ll be working from home both tomorrow and Friday, and then he’s home for the weekend as well, so I won’t have to take any of the pills on my own for a few days. Hopefully at that point I’ll be okay to take them on my own.

And hopefully this smell will go away FAST. It’s really been driving me pretty cray-cray.

 

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A new character emerges

As if my life were a book. Ironic since I used to write those.

I’ve been hiding in plain sight recently. My world has seemed to orbit around my food issues (another blog) and my father. And then the election. Oh God, the election. Please, another day.

Today is for my dad. My father was born eleven months after my mom, so he is almost a year younger than she. And yet, he has always seemed to be older than her, and his health has not been the greatest. He–like me and others in my family–has been overweight all of his adult life. He never had a good diet, he never exercised regularly, and for as long as my mother has known him, he has smoked a pipe. He’s been through cigarette phases and on occasion would enjoy himself a cigar, but his vise is really his pipe. As kids we had to live with it, though my mother always hated it and the smell of it makes me physically sick. When my parents had a house built in the late eighties, my  mother told my father he was no longer allowed to smoke in the house. He had to sit in the garage or on the porch he insisted the house have. He was only allowed to smoke in HIS vehicle and then only if he was alone. When they had their current house built, the rules were the same. Still now, on days when the wind is blowing just right and I’m outside, I can smell his pipe smoke coming from his garage. I still hate it. He has a smoker’s cough, a wheeze when he breathes, and his teeth are in terrible condition. His skin is bad, he has zero taste buds and absolutely no sense of smell.

In his sixties, my father was diagnosed with type 2 diabetes, high blood pressure, and high cholesterol. He didn’t care and he didn’t take medication and he didn’t change any of his habits. To this day, he doesn’t stay on medication. He takes it randomly and is convinced that the pharmaceutical companies are all out to make a buck and none of the medications do anything. He also randomly goes on and off all kinds of herbal “medications” with the expectation that they will solve all his issues. And again, has no consistency with them. He reads every alternative medical article and pamphlet he can and spouts his knowledge to whoever will listen.

Now, he is not really able to manage his sugar levels, despite attempting to go back onto his meds “consistently”. He will randomly announce he is off carbs and only eating protein, then not follow through. He will randomly announce he is off meat and only eating cheese and fish and bread. And pasta. He won’t follow through on any of that, either. And he has diabetic neuropathy in his feet. Very very bad neuropathy. He is in pain every day, often severe, and has been for at least four or five years. One time he told me he figured losing a foot was bound to happen to him. He was resigned to it. It hasn’t happened yet, but he’s not very actively doing much to keep that at bay.

My father retired from his job in the fall of 2003. Since that time, his life’s passion has been to read and smoke in his garage. When my mother got sick, he took care of her. His life then revolved around doctor’s appointments and combing through medical or alternative medical articles on the web. When Mom died, he crawled into his book and his pipe and refused to come out. Randomly he would tell me that he didn’t want to leave the house anymore. Randomly he would tell one of my brothers that he was crying “a lot”. So when my father had a medical issue crop up and he made an appointment to see his doctor, I went with him. I didn’t ask, I just showed up at his car the morning of his appointment about ten minutes before he was due to leave. When we saw his doctor, he told her that he was crying a lot and really didn’t want to leave the house. She asked him some questions and they talked–and he cried–and they talked more. And she asked him to try Lexapro. And she warned him it would take 4-6 weeks before he might feel any change, but that it would help him manage the depression until he was able to manage it himself. Or until it “lifted”, since she felt it was due to my  mother’s death. He promised her he would try it, and we went home with the pills.

Two weeks after starting the pills, he told us that he was feeling a bit better. He was doing more and talking more and crying less. Three weeks after starting the pills, he abruptly quit them without telling anyone, including his doctor. When I found out, I asked why and he told me he didn’t like the way he felt on them. But he couldn’t explain that any further. I asked him to alert his doctor–which he did by email–and he said if he felt like the depression was a problem, he would go back on the pills. Which we all knew was a damn lie.

It’s been about three months since he took the pills. Roughly two months since he stopped. He has admitted to me since then that he feels responsible for my mother’s death (which is not rational), and he told my brother (I learned later) that he stopped taking the pills because it made the feeling of loss and pain go away. And he wanted to feel the pain of my mother’s death. He was punishing himself for her death. And more recently, he has told me that he isn’t enjoying his books anymore. The one place he was able to hide and pass the hours every day. So when he had another health issue come up, I did the repeat dance and showed up at his car the morning of his appointment. And in the doctor’s office, after he went through the current medical issue, I brought up the depression and his loss of enjoyment of his books.

The doctor asked him to try another medication, which he refused. I didn’t know at this point why he stopped the meds and he refused to tell the doctor, only saying he didn’t like how he felt on it and “didn’t know” what that meant. After explaining to my dad about the chemicals in his brain being responsible for the depression, the doctor suggested he go see a mental health professional, possibly one that would be able to help him find a better medication for him. He said he’d think about it–after he cried and I cried–then refused to discuss it any further. My brother and I confronted him the next night about doing something, seeing someone, SOMETHING, and he refused to talk to us. He later told another of my brothers that “nothing is wrong with my brain!” in response to conversation about the depression being related to his brain chemistry.

I am feeling so helpless. Although his cognition isn’t great–which he has admitted–he is still in his right mind. We can’t force him to do anything. But I can’t give up and let him just spend his last years rotting away. I’m not asking him to be someone he’s not, but I hate that he has lost even his love of his books. Today I made an appointment to see our family Rabbi so that my brother and I can go speak to him. He’s been a part of our lives for over 45 years, and he’s a trained counselor. I hope he might have some suggestions, and/or consider helping us talk to my father.

I knew my mother’s death would be hard on my father. I had no concept of what that really meant IRL.

 

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Don’t pigeon-hole me

I had a very very bad night last night. Even before I was ready to go to sleep, I was feeling uncomfortable. My hands and arms were tingling, or feeling like they were going to be tingling, and no amount of moving them or rubbing them or moving around made it better. Hub went off to sleep, with an early morning alarm to go to an on-site meeting that required a two hour commute (each way). I sat up for a while because my right elbow started hurting. Then my left inner arm starting hurting. The tingling was still going on in both hands. I was so unhappy. I couldn’t lie down and get comfortable, so I kept sitting up in the dark (I had turned the TV off by about midnight in the hopes that I could go to sleep). I was rubbing my hands and bending my elbow repeatedly.

And I did the worst thing I could do. I thought I remembered that pain in your elbow was a symptom of a heart attack, so I looked it up. And it was…and I knew immediately I’d made a mistake by confirming that, and I turned my phone off immediately. I tried again to go to sleep but now both arms were hurting, the elbow, all the tingling, and my body was getting weary from sitting up for so long. I hadn’t slept a wink.

At one-thirty a.m., I had a panic attack in my pitch black bedroom, with my husband snoring beside me. This panic attack in particular consisted of violent trembling of all my limbs. I knew what it was and I let it come because I had hoped it would tire me out and let me give in to sleep. Instead, all the symptoms I’d had before the attack were still there…and I still couldn’t get comfortable enough to sleep. So I sat up for another hour or so and ended up with a second panic attack. Same violent trembling and fear, with all my pain symptoms still hanging on afterward.

So I woke Hub up and told him I needed to call an ambulance, because I was feeling really poorly, I felt short of breath at that point, and all my other symptoms remained. While he got dressed and went to the bathroom, I pulled on some clothes and tried to get downstairs to wait for him. He called 911, requested the ambulance, then called my father so he could take care of our dogs. It was about three thirty in the morning.

I wish I could say the EMTs were kind and compassionate when they arrived, but they weren’t. The lead guy started asking me what was going on, and I told him. He immediately asked me if I had any history of anxiety…which I said I did, but that it was well-controlled most of the time. And that my symptoms had all come about prior to any feelings of anxiety. He told me to follow him to the ambulance–Hub helped me out through the garage while the EMT just walked off–and told me to get in through the side door (again, Hub helped me up the steep steps). Inside the ambulance, the EMT hooked me up to the blood pressure cuff and oxygen finger thingy, then started asking me questions again. He kept telling me that my tingling and pain could be from anxiety, and I kept telling him the tingling and pain were PRIOR to me feeling anxiety. My vitals were pretty high, so he directed me to work on my labored breathing while he filled out some chart and told me he and his partner didn’t usually work our local area. As my vitals came down a little, he announced that maybe I wanted to just go back in the house and let them go back to the station. “We’re not in the habit of kidnapping people and taking them to the hospital if they don’t want to go…”

I just stared at him. I was giving him information on “bilateral” arm pain, shortness of breath, tingling in both arms and hands…and he was telling me to go back to my house. I told him in no uncertain terms that I was very familiar with my anxiety and that this wasn’t anxiety…and that I wanted to go to the ER to find out what was going on. He kind of sighed and said, “okay, but you need to keep working on your breathing and anxiety so once the doctor sees you, they can evaluate you without the anxiety in the way.” Then during the ride to the ER, he asked me, “how many times have you done this? gone to the ER in the ambulance?” I said, “this is the first time.” All he said was, “Oh.”

WTF.

At the ER triage, he told the nurse FIRST that I had a history of anxiety. During his recitation of my history and presenting pain, he told her at least two more times that I had a “previous history of anxiety”. They took me to a room and told me to scoot from their gurney to the hospital room bed, then said, “the nurse will see you at some point.” and they left.

Hub FINALLY found me a few minutes later, without any assistance from any of the nurses or the EMTs, who were all standing around chatting at the nurses’ desk. We sat in the room and waited for about half an hour (or 45 minutes?) before the nurse and PA came in to see me at the same time. The PA started asking me questions about how I was feeling, then looked at the computer and said, “You have anxiety issues?” I said yes, but that this was not the anxiety, that I have been managing my anxiety extremely well for quite some time–the PA looked at Hub as if she was expecting him to argue with me, but he confirmed what I was saying. So the PA said, “why don’t you let us get you started on some fluids and some anxiety medication?” I said, “no, I don’t take medication for my anxiety. I manage it without medication.” The PA looked dumbfounded, and wanted to know what she was supposed to do. I told her that I was afraid the pain was symptomatic of a heart attack, and I wanted her to check to see if that’s what was going on…or if it was something else and WHAT the something else might be. The PA asked again about giving me anxiety meds, or something for the pain in my arms. I said I didn’t want pain meds (which she told me would be anxiety medication anyway), that I had anxiety medication at home but that I didn’t take it. Again, I got a look from the PA that said she was sure I had lost my mind.

At this point, the nurse stepped in and said, “oh, I do the same thing. I carry my klonipin with me all the time, but I haven’t used it in years.” The PA looked both confused and annoyed at that point.

The PA said, “I can do a whole work-up, but your history says you had an EKG in June with a stress test and that’s the GOLD STANDARD. So if it was clean, you really don’t need to do anything here.”

I told her I wanted to know what was going on, what the pain was and why was I feeling really poorly. So she said she’d order the EKG, bloodwork, heart enzymes, and a chest and neck xray to see if there was anything going on there. She left the room, and seriously? That was the last time I saw her. We were there for another two and a half hours and she never came back into the room. Neither did a doctor. The nurse took care of us, did the EKG and told Hub about thirty minutes later that an attending said it was normal. She did the blood draw and then told us about an hour later that the results were all clean. She took me to get the xray (because their orderly was MIA) and she was the one who came back to say the xray was fine and I could go home. In the time we were there, she was in and out of our room a lot, talking with us about her history of anxiety, and how people who had never dealt with it didn’t understand. That she knew what I was saying, and how I was feeling about the meds, and how she understood that I was identifying pain not associated with my anxiety.

I felt so demoralized by the EMTs, the PA, and the other staff there (not including the good nurse). I am very open and honest about my anxiety. I feel it’s important for medical personnel to know my history in full, which includes my anxiety. I’m so disappointed that doing so in this instance gave the EMTs and the PA the reasoning (in their minds) to shove me aside, to not take me seriously, and to abandon my care.

We were released from the hospital and got home around six forty-five in the morning. Hub had to bow out of his meetings, he retrieved the dogs from my father’s house, and we both went back to bed. I slept for about two hours, then dozed fitfully for a little while after that. When I woke up and went downstairs to have some lunch, I found that I still had all the same symptoms as the night before. The tingling comes and goes–and is in my legs and feet and sometimes in my face–my back is hurting, I’ve had a headache on and off. I don’t know what’s going on.

Hub reminded me today that fall is usually when I get a pretty bad flare of my myofascial pain syndrome. So is that what this is? The pain is in different places and the tingling is new. Of course I know that my MPS symptoms have changed over the 15 years I’ve had it, but this all feels different. I don’t know why I feel that way, but I do.

Even so, I have no idea what to do now except push through and try to keep my anxiety in check. I am scheduled to go in to see my massage therapist tomorrow to try to get some trigger point work in, with the hopes that it will relieve some of the pain if it is in fact related to my MPS.

The panic attacks don’t feel like a huge setback (a small one, yes), mostly because I knew what was going on and I actually welcomed them with the hopes that just going through it would give me relief on the other side. Almost like if I gave it permission to happen, then I was okay with it happening.

Now…I’m tired. I hope I will sleep. Hub is working from home tomorrow for most of the day, I have the massage therapist, then I’ll be alone for a bit while Hub is visiting a client. Well, the dogs will be with  me and my father is nearby, but I’ll have to take care of the dogs and feed them and stuff on my own. Hopefully I’ll feel up to it.

 

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It might be nothing

Or it might be something. She literally said this to us. “It might be nothing. Or it might be something.”

So my  option is MRI or needle biopsy. I asked her for her preference, she said it could go either way. Needle biopsy only checks that one spot, so other things might be missed. MRI could show more stuff that might potentially be benign but end up requiring further investigation to find out such. As in, false positives.

I had so hoped to hear “Enh, it’s nuthin’. Nice to meet you. Off you go!” I guess they really don’t do that these days.

So now I wait to hear from their scheduler to set up the MRI. And of course, she’s out today. If I don’t hear from her by mid-afternoon tomorrow, I’ll call the office.

I’m not keen on MRIs. The last one I had, I was in the emergency room, and I got ativan both in pill form and intravenously to help with the anxiety. This time the doctor prescribed valium–two pills, one an hour before, the other when I get there if needed–in case I feel I need it. I’m not sure I’d be able to take it. The doctor said the MRI for breasts is different than a regular MRI, in that you are lying on your stomach and your boobs hang through the table. WTH.

So I didn’t get what I had hoped for. And for the moment, what I have is more waiting.

And our a/c froze up again yesterday morning (refrigerant leak that no one can find which means for the past 3+ years we’ve had to recharge our system 2x each summer), so I had to sleep in the family room on the couch. Upstairs felt like outside (90 degree heat index yesterday all day) and I couldn’t breathe just going up there to brush my teeth and change my clothes. The couch was pretty horrendous, so I barely slept. Yet another HVAC company came out to try to seal the system and recharge it again. And they put dye into the system in case the sealant doesn’t work. More $$ out the damn door on this stupid HVAC system.

Ugh.

 

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Probably TMI for most

Well, I won’t go into all kinds of details, but still, you’re forewarned.

I was talking about some anxiety in my last post. Here’s what is going on. I’ve been doing hypnotherapy during a few of my regular therapy sessions with T in order to work on my cardiophobia. We’ve actually been working both with CBT and hypnotherapy for my fear of exercise. Part of my fear is because of my heart, but part of my fear is also putting myself in more pain than my daily dose…on purpose. I’m in pain pretty much most days, but exercising means I’ll be suffering more pain because of strained muscles and such.

So part of my therapy is to exercise. Shocking, I know. We have both a treadmill and a recumbent bike in our house (the treadmill is like…oh, 15 years old, but it still works!), so I have options on what I can do for exercise with machines. The bike is newer than the treadmill and it has those little dohickies on the handles that measure heart rate, which is a no-no for me. Just watching the heart rate go up is an anxiety trigger. So many people say exercise helps their anxiety, but it’s actually a major trigger for me. I started riding the bike (I figured it was lower impact on my arthritic knees than the treadmill) every night, with the intention that I was riding it to work on my fears, not on my weight loss. It gave me permission to see the exercise as something different…not to be perfect at it, not to think that if I only ride it a few minutes every night that it was a failure because a few minutes is a waste in the weight loss world. No, it’s part of my therapy, part of my recovery, and even sitting on the damn machine is an accomplishment.

I started slow with the bike, literally and figuratively. And I met my first goal of riding the bike three days in a week…and then I just kept going. I’ve been able to increase by one minute since I started. I’ve learned not to put my hands on the heart rate dohickies…and if it is too tempting, I’m going to put socks over the handles to make them not work. I listen to a little music, I play a game or two on the iPad if I have it. I go in, I get on, I ride, I leave, I recognize the accomplishment of what I’ve done. I went ten days. Some of the days I could have talked myself out of it (the a/c upstairs died again…my knee hurt, I had another owie which I’ll explain shortly) but I didn’t talk myself out of it. My mental recovery seems to be so much easier for me to work on than my physical. I haven’t really ruminated on that very much, but I suspect that is coming in therapy soon.

Monday night I went to shower and I realize there is a redness under my right boob. I’m endowed and…droopy. I’ve been that way all of my adult life, I’ve never gotten a heat rash or sweat rash under my boobs before (I am wondering if this is because of the surgical menopause and hormone issues). I don’t sweat like normal people. My first thought was oh shit it’s breast cancer because it was only under one boob and I know that there are some breast cancers that present that way. I managed to convince myself it wasn’t cancer even before the redness showed up under my other boob. At that point I was pretty well sure it was a heat rash (or sweat rash) from riding on the bike. So now I’ve got knee pain, foot pain (stupid plantar faciitis) and underboobs rashes. *sigh* I go buy these things that go under the boobies that is supposed to help wick away sweat. The are uncomfortable and weird and they move around. Joy. I also buy some tea tree oil and a powder for rashes and fungus, in case it’s a yeast fungus under there. The under-boobie wicky thing seems to help but not make it go away altogether yet.

Wednesday night I’m on the bike again (I’ve even been able to ride when I’m home alone, which is a big deal for me because if I have a heart attack on the bike…and I’m alone… shudder) and I’m like what is that pain? It’s in the crease of my left leg where it meets my groin. And I’m thinking it’s another damn heat rash. Great. I put some gauze in the crease and try to deal with it for overnight. Next day, I put another clean bit of gauze there to keep the area from rubbing and getting worse and I go about my day. I get on the bike again last night and I’m like … unh, that hurts. I finish my predetermined ride and go shower and suddenly I’m realizing it’s not the heat rash in the crease of my leg that was hurting. I have a cyst…my guess is an infected cyst (I get sebaceous cysts under my arms sometimes, but not for a while) or it could be an ingrown hair. It’s, uh, down there. Ya’ll ladies know what I mean. It’s in an unfortunate place, making sitting, standing, walking, lying down all very very uncomfortable. Dammit.

I tell Hub about the issue (he looks somewhat horrified), I go to sleep and wake up this morning first thing to call my doctor’s office. I don’t want to mess around with this area, so I beg them to fit me in today. They do and I go see one of the other doctor’s in the practice. She says “abscess” but won’t otherwise identify if it’s from a cyst or an ingrown hair. She doesn’t want to do anything with it but suggests I see my gyno to see if they want to drain it or what. I tell her my gyno is an hour away and not likely to be able to fit me in today, so she suggests I see the gyno in their extended practice and she goes to make an appointment for me. When she comes back, she tells me I’ll be seeing the nurse practitioner that afternoon, and oh by the way here is a prescription for bactrum (antibiotics). Oh how I love pills. And ABs are my favorite.

I go back later to see the NP, who tells me she can’t drain cysts and all the doctors are booked. But she graciously offers to do a lookie loo to see if the cyst actually needs to be drained. She measures it and says it doesn’t look too big, but writes down the info for future reference in case I come back with an issue next week. “Good news!” she chirps. “I wouldn’t drain this. It’ll drain on its own. Take your ABs and use warm compresses and a sitz bath as often as you can manage.” We talk about timing for when the pain will abate and what to expect from the “draining” and I go home.

The first time I saw the cyst last night, it was white. By the time I got home and everyone was done poking at it, it was a purple-red. Yay. (I told you, TMI.) Upon getting my ABs, I come home and go look up my blog post from when I had to take these particular ABs, and I apparently have nausea, bad taste in my mouth, and dry mouth (editing to add, and dry/itchy eyes near to the end of the course of ABs) to look forward to for ten days at least. Two pills a day over ten days. The NP told me to be happy, the other option is something like 4 pills a day over 20 days or something ridiculous. But at least I have experience with this AB, so maybe I’ll be okay with taking it more easily. (Prolly not, but one can hope.)

This is what I get for exercising? One time I went to vacuum my bedroom…I plugged in the vacuum and 10 seconds later the circuit blew. I reset it, plugged the vacuum into a different outlet across the large room and 10 seconds later another circuit blew. I reset it, used a plug in the upstairs hallway and THAT one blew. I decided at that moment that G-d did not want me to vacuum. I wrapped up the cord and put the vacuum away. So, is this what I’m getting about exercising? Multiple messages saying “don’t do it!” Well, another conversation for therapy, I guess.

Also, ow ow ow ow. 😦

 

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