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.

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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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Test results update

I’ve completed recent tests and received all the results.

Neurology
Neurology tells me my blood work is completely normal, which tested for myasthenia gravis and muscular distrophy. My EMG was “long and thorough” and normal. My first and follow-up physical exams were normal. In our follow-up appointment last night, the doctor finally admitted that he was looking for signs of MS–which he says he didn’t mention prior because he doesn’t like to frighten patients–but found none. After he said that, he said he could suggest a brain MRI, but found no symptoms to support getting one. I told him I’d had a brain MRI five years ago at an ER visit and that they found no signs of any issues (other than a schwannoma that was then “not found” at a follow-up appointment). He said if it was five years ago, and I was 40, that if I had MS, they would have seen signs of it already in the MRI. So that was even more reason to skip the MRI. His final words? Wait it out, see if any other symptoms come up, and go out about my life. He said I could try seeing a rheumatologist, but it seemed like a half-hearted suggestion.

Allergy
I saw the allergist on Tuesday. He was very nice, listened to everything I had to say and asked questions. He told me up front he didn’t think the fatigue/exhaustion was related to allergies, but said it was worth finding out what kind of allergies I had going on. He didn’t seem to understand my wheat “allergy” and asked a lot of questions…including when I told him that I’d been gluten free for at least twelve years, he said “and you’ve never eaten just a bite of anything? not even cake or cookies?”

W.T.F.

Would he say that to someone who had a reaction to peanuts in the past and thought they might have peanut allergies? “Not even a peanut butter cup? Not even half of one?” It was a little frustrating. I’m not sure if it was because I’m fat, or because he didn’t think the “allergy” I had was important enough? Either way, I just said, “No, it makes me feel incredibly horrible and I saw no reason to do that to myself on purpose when I knew what the cause was and it could be avoided.” He accepted that and moved on, but I suspect he didn’t really believe me. He tested me with the skin test, both a needle and a “scratch” test (not at the same time or in the same spot), including tests for wheat, rye, and barley. I had no reaction to any of the needle test–including zippo response on the wheat–but the scratch test (which is more “invasive”) popped “mildly” on dust mites. He did not test me for wheat on the scratch test… However, I will note, that when they did the scratch test version, within five minutes of them doing it, their “histamine” scratch area gave me the same response as what I get to eating wheat. My face started to get red and hot, as did my ear. When we went back so the nurse could read my results on my arm, we told the doctor, and all he said was “interesting.” But for me, it shows me that THAT response IS my histamine response, and points back to the wheat giving me a histamine reaction. In the end, he noted it as an “adverse reaction” to wheat reported by the patient. WhatEVER. I read that both skin and blood tests for allergies are only 60% accurate anyway.

Gyn/Oncology
I had my CT scan last Thursday. For the first time, I had terrible stomach issues after drinking the barium, which sucked. I made it to the radiology office, had more stomach issues, then had to stand and talk to the check-in person while she figured out what needed to be done. Then I had to go wait because they wanted to call my doctor’s office to confirm they didn’t REALLY need without contrast as that causes unneeded radiation in my particular case. When they finally got through to the doctor and recalled me to the check-in station, I was then informed that I had to pay for the CT Scan because I hadn’t met my deductible and that I had been notified ahead of time that I would put down a couple of hundred dollars in advance and follow-up the remainder payment later. I had been told no such thing…and I was PISSED and tired and felt like shit and I paid the advance because I needed the test and so what was I supposed to do? The woman doing the CT was SO NICE y’all. She really took care of me, was kind, and helped me work with my impinged shoulder. When we were done, I went back out to where my father was waiting for me in the car because I haven’t been driving myself due to my leg weakness and my imbalance and fatigue. The radiologist said my doctor would have my results by the next afternoon, but I heard nothing. I spent the weekend feeling mild terror, because when I was diagnosed with the cancer, my oncologist actually called me on a Sunday  night during dinner. It was like a little bit of PTSD to get through dinner Sunday night, but no phone call came. I finally found the results online at my oncologist’s portal on Tuesday, which said the scan was clean. Oddly, I never got any notification or update directly from the doctor, which was unusual for him.

Insurance bullshit
As it turns out, apparently the radiology center was correct and I had to pay my entire deductible for the scan because I have SHITTY-ASS INSURANCE (this is new insurance for us since May b/c Hub changed jobs). I’ve never had to pay anything for CT’s or x-rays or blood work when I go to a lab/radiology center. And I also see now having inspected the insurance more deeply that they don’t even cover 3D mammograms. And not only do I pay deductibles for all this shit, but I also have to pay 10% co-insurance. Let’s not forget that I have a huge deductible for out-of-network which means they aren’t even close to covering any of my sessions with T. I seriously thought that we had the most obnoxioiusly horrendous insurance until Hub got a job offer from someplace new and we found that they were offering something called an EPO, which would cost us $50 more a month than we’re paying now and offer us waaaaaay  less coverage. Apparently EPOs are the “new” thing that are essentially HMOs without needing referrals to see specialists, plus they have higher deductibles and cover fewer things. And insurance companies are suckering people in because they think the EPO is more like a PPO (higher level of coverage and out-of-network coverage) when in fact they are more like HMOs. So insurance companies are yet again screwing customers with lies and deceptions. Woo-hoo. Hub, in fact, turned down the job because of the health insurance and was then told the next day that he was the second “high profile” candidate in recent weeks to turn down positions because of the health insurance.

Primary care doctor
My last appointment with my PCP left me with the suggestion to go see a sleep doctor and/or the infectious disease doctor for chronic fatigue syndrome. She also told me she won’t write a note to the insurance company that indicates I have myofascial pain syndrome without me coming back in for yet another appointment–which will cost me even more money–so that insurance might consider covering some small portion of my trigger point therapy. (Neither would the neurologist, despite the fact that MPS is supposedly a neurology classified syndrome AND I was IN HIS OFFICE when I asked him.)

And so, here I am, in the same place with no plan forward. I am pushing myself to do more to see if I can just IGNORE the symptoms away. My imbalance is bad and I’m struggling to keep myself upright. I DID drive myself to PT on Monday, but it is literally five minutes from my house, on two roads that see minimal traffic. When I talked to my PT person, she said she had a client who was diagnosed with a virus who had horrible fatigue for over a year…but that after that she was fine.

I am burned out on doctors. I don’t know what I’m going to do now. Wake up, step forward, keep going. Try not to let my anxiety get the better of me as much as it has. Accomplish things when I can and celebrate when I do. Rest as needed.

 

I look normal

Yeah, I look normal. Fat, but normal. Short, but normal. Brown-haired, brown-eyed, but normal. Rosacea-faced, but normal.

I’m not “normal”. I have invisible illnesses. I have issues that most people wouldn’t understand. I have to do things and live in ways that most people can’t understand.

I loathe being judged for how I manage my life. It’s rude, it’s insensitive, it’s unkind. If you don’t know what someone is going through, consider giving them the benefit of the doubt. Consider that someone outside your tiny world is living their life the way they have to for their own reasons.

Once again, our air conditioning is not working right. We have an upstairs system and a downstairs system. It almost seems like our upstairs system is FINALLY working properly after years of instability due to refrigerant leaks that no one could find the source of. But now, our downstairs system is acting up. It’s been tripping our circuit breaker randomly. Seems to be at the end of long, hot days, so we assumed it was being overworked. Then it started happening more often recently. This morning, it was tripped when I went downstairs first thing this morning. So I went to the electrical panel and reset the breaker, assuming it must have tripped last night because of the humid weather. Before I could leave the room where the panel is, I heard the circuit breaker trip again, almost immediately. I went back to reset it, but again it tripped right away.

We’ve already had an electrician out to check the breaker, which is fine. Last week, we had an a/c guy out to check the system because of the repeated tripping of the breaker. He found nothing, but suggested that based on the symptoms, it was likely our compressor was going bad. It’s not even six years old. But he wasn’t confident that was the problem, so he left with the suggestion that we consider a maintenance contract, but because we’d already established a potential problem, the contract wouldn’t cover that. So WTF was the reason to get the contract? Now, today, the breaker wouldn’t stay on, it kept tripping, which meant a call to another a/c company to see what THEY had to say. Which also meant in today’s hot and humid weather, we had no a/c on our main floor.

I have incredible heat intolerance, and my body does not regulate heat/cooling very well. That means if I go outside and it’s hot and humid, when I come inside it takes me hours to cool off, even when our house is well-climatized. In addition to the heat intolerance and regulation issues, I also now have hot flashes to deal with. If you have hot flashes, you know that for some reason your body does not dissipate that heat very well. It’s like you are being boiled like a lobster without any relief. I wear sleeveless shirts every day, all year round. I overheat so easily, it’s ridiculous. And once I overheat, it can linger. I keep ice packs in the freezer to help me when I get desperate for relief. Also, parts of me get cold from being in the cold (fingers, toes, arms), while the rest of me is hot. WTF.

The a/c guy who came today did all his tests, got the system running, but couldn’t find the actual problem. Could be X or Y or Z. Potentially Z could be the compressor, which turns out to be almost $1300 to replace, not including parts as those are under warranty. The a/c guy, as he was taking my money for the visit, asked what we normally keeping the house temperature at. I told him 65 degrees (although upstairs it’s lower) and he looked like he wanted to pass out or throw up. He told me that’s probably why the compressor is giving out so soon. He told me, “you’re killing your compressor. you really need to have the house set at 70 degrees. a normal setting would be 72 degrees.”

When the house goes up ONE degree, I can tell. When it’s 2 degrees over what I’m accustomed to, I get hot. I know when the a/c has tripped the circuit almost right away. This person, who has no idea about my life, my pain, my heat intolerance…he has no right to judge how I keep my house. Of the things that I have to live with, this one I at least have some ways to help myself. I keep my house like a refrigerator because I have to. I don’t have a choice. I didn’t choose to be this way. I didn’t ask to have these issues. I am living the way I am because I have no other way to live.

I can’t even tell you how difficult it is to be this way and have to be somewhere other than home. Heat can trigger a hot flash, which exacerbates the problem. Even at my dad’s house–where he keeps his a/c at 72 degrees–I am incredibly uncomfortable. In restaurants, I am always hot, which really ruins what could be a good meal and a relaxing evening. Go to someone else’s house? The doctor’s office? A store? A movie? A concert? The library? The hair salon? Even in a cotton tank top, I overheat. It SUCKS.

I’m still feeling crappy. Almost all my joints hurt. All my muscles feel weak. I’m really tired. Next week, I have an appointment to see a neurologist because my primary has no clue what to say to me. She went through the suggestion of virus, sinus infection, allergies. She told me to move around more, to drink more, to rest more. I have trouble getting up on my feet, standing on my feet, walking, sleeping, sitting, bending, moving…I’m going to have to explain all that to the neurologist who knows nothing about me. I’m hoping for compassion and understanding and open-mindedness. I expect none of it based on previous experience with doctors.

People who look at me don’t see my pain. They don’t know from looking at me that I have a shoulder impingement so I can’t lift my arm, or pick things up, or weed my garden. That random movements of my arm sends shooting sciatica-type pain down my arm. Sometimes petting the dogs hurts. I can’t put my clasp bra on normally anymore. Pull-over bras are almost as difficult to get over my head. Pulling shirts over my head hurts. Opening doors with that arm hurts. Reaching for soap with that arm hurts. They don’t know from looking at me how much harder it is getting every day for me to wash my hair. I can’t shave my armpits because I can’t lift the bad arm and I can’t reach the other pit with the bad arm. They don’t know that standing on my feet hurts my ankles and my knees, or that bending over hurts my shoulders and my neck. They don’t know that sometimes (but not every time) turning my head can instigate imbalance. They don’t know that when I stand up (or sit down even) it feels like the muscles in my legs might not support me, and/or that I feel like I’ve run a hundred miles (but really I can’t even walk a mile). They don’t know that I can’t pick things up because my arms feel weak, and I often worry I’ll drop whatever I’m attempting to pick up. They don’t know that I worry that I can’t take care of myself during the day, let alone take care of my dogs, because of these things they can’t see.

I look normal, but realistically I am anything but. You can’t see it, but it’s true. It’s anything but easy, but this is the only life I have. I already know that I have to spend more, do more, prepare more, worry more because of how I am…you poking at me for having to do those things is cruel. You judging me for how I have to live my life is shitty. Don’t do it.

(obv this isn’t aimed at my readers, so take no offense, I just needed to rant)

 

 

He’s leaving on a jet plane

Fortunately, I know when he’ll be back again.

But right now, that doesn’t really help. Tomorrow morning we’ll be driving Hub to the airport at 4am so he can catch a 6am flight to California for his sister’s wedding. And then I’ll come home and it’ll be me here with the dogs.

I had my appointment with T today and we talked all about this. I’ve got my plans made for the four days and four nights he’ll be gone, which include A LOT OF BOOKS from the library and a massage scheduled for Tuesday. Plus, I figure I’ll be renting lots of movies either from amazon prime or our on-demand cable television. And if things get bad enough, I’ll go spend time at my father’s house with the dogs. Not sure I want to sleep there because taking the dogs and all their paraphernalia will be a pain in the ass. Additionally, T reminded me to text her if I need to talk to her. I suspect I’ll be reading a lot of books to waste the time, both day and night, and napping on and off during all hours. Mostly I’ll be scheduling myself around dogs’ schedules for food and trips outside…and then trying to nap when they are sleeping.

Also, to prepare, we bought a security camera floodlight thing, that alerts me if there’s movement outside the door…and I can open the app and see live video of what’s going on (and it records the video if I miss the alert). It also turns on the floodlights with movement at night, along with low-light live (and recorded) video. So, at least I have that extra bit of security for myself.

Part of what I talked to T about is the fact that I don’t really know how to be without Hub anymore. I know how to be alone when he’s here (or at work), but I don’t know how to be alone when he’s not HERE. I’ve known him for longer than I’ve NOT known him. It’s been years since we’ve had any major separation (4 since his parents’ accident where he was gone for 3 days unexpectedly, but closer to 8 years for anything longer than those couple of days), and at that point I had my parents helping me while I stayed at their house…and we had Sweet Pea, who was easy as pie to take care of. Now I have this big house and I have Butthead, who requires a lot of energy and close watch. And I don’t have my mom nearby to hang out with when I get lonely, sad, or scared.

Another part of my concern is that Hub has health issues. He has diabetes (with minor leg and feet circulation problems), high blood pressures, and has a history of supra-ventricular tachycardia. I mostly am worried about him getting a blood clot in his leg from the traveling in the airplane…and even worse I’m worried that he won’t realize there’s something wrong. Or he’ll think whatever it is that is wrong isn’t a big deal and he’ll ignore it and not get to a doctor. Or that he’ll ignore it and get on the plane to come home and make it worse. The possible thought of losing him–especially considering how hard it’s been to lose my mother–is really overwhelming. I’ve been trying really hard NOT to impose my fears on him. The only thing I suggested is that he try to keep moving his feet and legs around on the plane just because of his circulation issues…and that’s all I said.

The probability of him having any kind of major problem is pretty low. The probability of me having any kind of major problem is pretty low. I have to just keep reminding myself that we’ll get through this. A week from now it will be over and we’ll be back to normal programming.

Until then, I am trying not to judge how I am handling things. I’m going to do my best to do my best, and then whatever happens happens.

(day one post)

 

 

 

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.

 

Who do I do for?

Maybe about a month ago, I said to my father, “What do you think about having the family over for a Memorial Day barbecue?” He agreed, and although I offered to host the dinner at my house, he said it was fine to have it at his house.

I made this suggestion for a couple of reasons.

1. My aunt and uncle (my mother’s brother and sister-in-law) have been trying to get us to come to gatherings at their house or their daughter’s house since my mother’s passing two months ago. In both cases, I declined, as I was not ready. My father went to the mother’s day gathering, and came back saying it was very difficult for him.
2. My brother has told me how he wants “the family to stay together” and that he doesn’t want to give up “family get-togethers” even though Mom is gone. (I have so much more to say about this but…enh)
3. I don’t want my aunt and uncle to become disconnected from my father and/or from the rest of my siblings and me.
4. I wanted my father to have something to look forward to

I figured this would be very low key, so I didn’t make a big thing of it. I invited my aunt and uncle, my cousins, a friend of my mother’s, and my local siblings. I told people to bring any kind of side dish that they liked to eat, but that we would provide the grilled meats. I didn’t think about anything until I needed to buy the food a few days before, and even then I kept pushing it out of my head.

I thought Memorial Day would be easier because we don’t associate the “holiday” with my mother. In past years, if we ever did anything for Memorial Day, it was an impromptu cook-out at my house mostly because Hub wanted to grill anyway and sometimes my parents and brother would join us. I thought this would make everything easier.

When I went over on Sunday to bring some food ahead of time to my father’s house, I asked him if he wanted help setting up in the dining room, which is where we normally host more than the immediate family. But he wanted to have everyone in the kitchen. We went through a bit of work to make that fit, but he seemed to want to stay away from the formal dining room where we usually have gatherings. I understand, so I didn’t discuss it with him, we just did what we needed to for the kitchen.

There was a snafu with the grill, but we managed to get food grilled and put out on the island for people to serve themselves and then sit at the table together. I felt very disconnected from everyone. I spent most of the two hours disengaged and quiet. No one seemed inclined to hang around after eating.

My aunt–the one who can’t seem to get past her own grief for her mother–put her hand on my shoulder on the way out and said, “It’s a good first step, right?” I wanted to punch her in the throat. Instead I said, “thanks” and turned away.

We cleaned up, then everyone pretty much left. When I thought my father was okay, Hub and I went home. I was a bit annoyed at the “side dishes” that people brought (someone brought a little package of pre-cut fruit, someone else brought a little bowl of cut veggies, and someone brought a bowl of cole slaw), but I really just wanted the evening to be over.

I didn’t want to have this get-together. I didn’t want to be the one arranging it. I didn’t want to be there. I hated the whole thing. I didn’t do any of it for me. If it had been my preference, I would have not had any get together. I’m not ready. I’m not interested. It hurts too much.

My brother, the one who has said how upset he is that the family isn’t getting together? He’s the one who hardly ever spent time with my parents. He’s the one who doesn’t stop by and visit, or instigate any get-togethers. He never hosts anything at his house. He never arranges any family get-togethers. He never even calls to say “we’re heading out to dinner, want to join us?” He says he is going to invite our father out to eat to stay in touch with him, but he hasn’t done it. My brother’s wife saw our mother maybe once in the last difficult two months of her life. She just didn’t care. My brother suffers from major depression. He is being treated for major depression. I want to do what I can to help him. I don’t know how he is helping himself in this arena of staying in touch with the family. I think he is relying on me to do it, and I don’t want to do it. If he wants the family to continue to get together, he’s going to have to participate. Because I’m not going to step into my mother’s shoes and take over. It isn’t me. And I don’t want the things he wants. If he wants those things, he’s going to have to do them.

My father…I don’t know what he wants. I don’t think he ever HAD to do anything with regards to family gatherings, so he just doesn’t do it. If I don’t do it, will the family slow fall away from each other? My father doesn’t want to do anything. He never had to pay bills–my mother did that–so he has no clue what money he has or doesn’t have. He doesn’t know about his the house or car insurance. He doesn’t want to know. My brother–the one who lives with him–is basically doing all the bills. And the grocery shopping. And the cooking.

I basically just spent the last ten minutes sobbing. I’ve cried myself to sleep the last two nights. Today I just feel overwhelmed and completely overemotional and this isn’t even the first time I’ve cried today. Apparently not the last, either. As soon as I catch my breath, I just start again.

I miss my mother so much I can’t even… I just can’t even. Period.

I’m in pain. My body hurts. I saw my massage therapist but it didn’t help and she’s going on maternity leave so I won’t see her for months. I’m not sleeping. The acupuncture isn’t helping. My health anxiety is suffocating me. I haven’t been able to write anything (my books or anything other than the blogs) for years. Since before my mother got sick. I can’t figure out the paperwork for my mother’s bonds.

I feel like … nothing. I don’t want to engage with anyone. I don’t want to do anything. I don’t have the energy to be the person everyone else seems to need me to be. Not right now. Not today.

 

 

 

Unnoticed and feeling the guilt

I am having a bad day. I am going to whine about it. You are forewarned.

Technically speaking, this is day 2 of the “bad day”. On Monday, I decided for no apparent reason that it was time for a haircut. I don’t like haircuts, they give me anxiety. More specifically, making the appointment and going to the salon (and being IN the salon) gives me anxiety. The haircut is not that big a deal for me anymore…I know it will grow back. I know if it’s a bad cut, I’ll deal with it somehow. It’s just hair. I came to that conclusion when about 8 years ago I cut off 23″ of hair and sent it off to one of the organizations that makes wigs for children with cancer. It was the same way that time…I made the decision, I went, it was over with, I survived it and the ensuing days/months/years with short hair (for the first time in 30 years). Since then, the change from long(ish) hair to shorter hair doesn’t bother me. But having to call to make the appointment…and then survive the appointment, they are anxiety-making.

I am not good at small talk. People think I’m good at it, but I hate it. I spend days before trying to think of things to say and/or talk about. Then I feel like an idiot having the conversation. I don’t know the stylists, I don’t know their lives or their interests…I just feel dumb. In addition to that, I have anxiety over the hair washing station. I hate having my head resting on that thing because it hurts. I’ve heard of instances where people can have strokes from resting against those tubs (true? not true? does it matter to anxiety? nope). I also end up with muscle strain from being stretched to sit with my head on that tub thingy. Sometimes I wash my hair at home and go with wet hair so they don’t have to wash it again. But then I feel like the haircut isn’t as good because they didn’t see my hair ahead of time, dry, to see how it needs to be cut. I also feel judged when I’m sitting in the salon…just because I feel like it’s a frufru place. I feel out of place there.

Okay, so I called and made an appointment with the stylist I saw last time. She does an okay job and isn’t overly talkative. She looks like Pink! I’m just saying, she’s a bombshell. I’m always intimidated by her. But I wanted to get something fun done and she’s the queen of that kind of stuff (her instagram rocks). I found a color I wanted for my hair and brought it with me. She did the color job, cut my hair, then blew it out (without asking). I both love and hate having my hair blown out. I like it because it’s different and I can’t do it at home. I don’t like it because it doesn’t look like me and then I never know how my cut really is with my normal hair. I left the salon (after leaving a rully nice tip because that’s how I have to be) and came home. I wanted my hair to be reddish purple. Yes, I said it. My hair is normally brown. I used to dye it red all the time…oftentimes a very unnatural red because box color is hard, ya’ll. So I came home and I am looking at my hair and it’s reddish. But I see no purple. I had worked myself up to purple-ish hair and it’s just…red. Hub says he sees purplish, I don’t see it. I’m disappointed. I haven’t washed my hair yet so I have no idea if the cut is okay, but even if it isn’t…it just is what it is. And it’s shorter than I expected…as it always is.

So I’m home. And I’m trying to ignore my hair. And I talk to my mother, who only knows I went to get my hair cut. And she’s telling me that my brother (who lives with them) is upset about something he didn’t know about…because he has to know everything. Even when it has nothing to do with him. And I’m one of the people who knew about this…THING that has nothing to do with him. Part of it was my doing. So she asks me to tell him about it and I get mad. I tell him, then I tell him if he has questions he should ask her…which he doesn’t bother to do. He just wanted to be mad and make my mother feel badly. He’s really self-centered and doesn’t think about other people. He’s sure the world should revolve around him. His schedule, his knowledge, his life. It’s very difficult for me because although he’s older than I am, I often feel like I’m taking care of him. I often feel like everyone is catering to him, even though he’s entirely capable of being an adult.

So that was yesterday, and now it’s today. I go over to go with my parents’ to my mother’s lymphedema appointment and I tell my mother than I’m angry with my brother. She takes his side, tells me not to be angry. And I tell her I’m allowed to be angry. Then she tells me she likes the color of the pants she’s wearing. I bought her those pants so she’d have something with larger legs that would cover her lymphedema wraps. I picked out the color for her, I ordered the pants, I did it without asking because I knew it would be helpful. She said she liked the color of the pants but didn’t say thank you to me for taking care of it for her. She didn’t mention one word about my obviously reddish hair. She only told me not to be mad at my brother because “he can’t help it” if he is the way he is (she made him that way because she lets him get away with it) and told me she liked the color of her pants.

I helped her roll her wheelchair into the bathroom so she could go before we left for her appointment, then I sat down in their living room and texted Hub and said, “I feel unnoticed and unappreciated.” He wrote back that he was sorry, that he loved me, and that he liked my hair. I help my mother down the hall in her wheelchair and into the mudroom to get her coat on. We get in the car. There’s no conversation because I don’t initiate conversation. Normally I try to keep Mom occupied, but I didn’t today. We get to her appointment and the therapist starts talking about wrapping Mom’s legs at home. And I’m volunteered. Because my father has no patience. And who else is there? And in my head I’m already thinking of how often I’m going to need to unwrap and rewrap her. What weird hours of the day she’s going to want that done. The therapist tries to train me to wrap my mother’s legs–feet, calves, thighs–so she does one leg and I do one leg. My OCD gets to me, it takes me three times as long to wrap the leg I’m working on versus the therapist (I know, she’s been doing it for 14 years…but it’s my brain hating on me). We finish up and go back to the car. I’m silent on the way home, though I’m texting with another brother about some paperwork we’re trying to finish up for my parents. And we’re talking about the brother who lives with my parents and how frustrated I am.

We get home. I put together all the wraps from the last appointment to take home so I can wash them…because who else is going to? I ask Mom if I can get her anything and she says no. Then she says, “You got your hair cut?” I said yes. That was the end of the conversation. I put my coat on and came home to take care of my dogs and wash the wraps.

I feel like I’m unnoticed and I feel terrible for feeling this way. I wouldn’t be anywhere else. I wouldn’t NOT do the things I’m doing. I wouldn’t not buy the clothes she needs, or try to buy the wheelchair cushion she needs (it’s too hard and it makes my back hurt–not thanks for thinking of it, but can we try finding something different…), or wash the wraps, or go to the appointments or buy the food or supervise the cleaning people or clip her toenails or cut her fingernails or make her soup the way she likes it or  … or… or…

But I’m still a person. I still want to be seen as a person. Their daughter, their sister…not just the person who is doing all the things that no one else is doing. Not the person who had to learn how to read and decipher legalese to figure out their trust paperwork. Not the person who had to figure out how to deal with their bonds, or transferring their accounts into the trust…or how to move all her volunteer work to other volunteers. I’m still me. I’m still part of the family, I’m not just a personal assistant or representative or paid caregiver. I want to be acknowledged, I want to be noticed, I want to be appreciated for the things I’m trying to do to take care of things. No, I want to be noticed and appreciated, period.

I’m tired. I can’t take a break because there’s no one else to do these things. They won’t let me hire someone to help them. And honestly, even if they did, they’d probably want me to be there to supervise them, like with the cleaning people. I’m not able to do as much at my own home as I used to. Laundry falls behind. The dogs get left at home more and more…I don’t see Hub as much. The dishes stack up in the sink or sit in the dishwasher. Things that need to get done are not getting done at all. I feel lost, like I’m losing who I am. And I feel absolutely horrible about feeling that way because I love my parents and I want to do everything I can to help them. I didn’t know this would be so hard. I’m terrified because I know this is only going to get harder as Mom gets sicker. She’s lucid, though she has trouble hearing and remembering things right now. But in truth, this isn’t the mother I remember, even in the last couple of years that she’s been fighting with this. She’s unhappy. She’s moody. She’s short with her temper. She acts like a petulant child. She complains that no one does anything right. I know she’s sick. I know this is incredibly difficult for her. Which is all the more reason why I feel horrible for feeling the way I do.

I try really hard not to be short with her, and I try to do things the way she wants–generally asking specifically what she wants and encouraging her to tell me how she wants it done. She’ll tell me it’s fine, then complain when it isn’t done to her standards or satisfaction. As soon as I walk into the house she starts complaining…about my father, about something that happened or didn’t, about the doctor, the pills, the cleaning people, the phone calls, the crochet, the television…whatever is sitting on her mind. She doesn’t even say hello or ask how I am. She almost always asks about Hub–who we all claim is her favorite child–but she doesn’t often ask about me. That’s another reason why I feel like I’m invisible. If I limp because of my plantar fasciitis, she might see it and say “why are you walking like that” but that’ll be it. Most times she won’t even notice.

I know that’s my mother still in there. I don’t think she knows that I’m still in here.