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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.

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Shock and OW!

I know that I said previously that I wouldn’t be seeing the neurologist for my EMG until September, but that changed.

I had such a terrible weekend. Saturday I basically did nothing because I felt so weak and tired. We went to bed at our regular time that evening, but at 12:30am Sunday morning, Hub and I were awakened by SCREAMING smoke alarms. In our house, all our smoke alarms are interconnected, so if one of them detects something every single alarm goes off. Not only does it make that horrendous alarm noise, but it also yells “FIRE! FIRE! FIRE!” I literally sat straight up in bed and hit Hub in the chest to wake him, then I turned the overhead light on. The dogs were freaking out, I was trying to get dressed, and Hub was trying to unhook himself from his CPAP machine, all while the alarms are screaming and yelling, and the dogs are running around the bedroom (we keep them closed in with us at night). We finally are semi-dressed and have shoes on and we open the door to the hallway and the screaming gets louder because there are more alarms in the hallway and in each of the bedrooms. I tried to get the dogs downstairs to give them treats (they always get treats when there are loud noises) while Hub tried to silence the smoke alarms (the dogs are still freaking out and Butthead races into her crate and won’t come out even though there’s an alarm nearly over her head still screaming). We don’t see or smell fire anyway, but Hub goes to investigate the whole house while I retrieve Butthead and rush the dogs outside and away from the noise. When Hub comes outside he tells me he has ripped down several of the detectors and the noise has stopped. I’m not happy, I’m afraid that there’s a fire in the attic or in the walls or there’s CO2 somewhere and that’s why the alarms went off. So at about 12:45, I find and call the non-emergency number for the fire department, and I explain what is going on. They take my address and say they’ll be out to the house shortly…and while we’re waiting the alarms go off again, so Hub rips MORE detectors off the ceiling and when the silence reigns again he takes the dogs into the basement so they can’t get out of the house and I go outside to wait for the fire department. To try to shorten this story–which really has nothing to do with this post–the firefighters come out to the house in the middle of the night, and after inspecting the entire house, they figure out that ONE of the smoke detectors has malfunctioned. And because it was wired into the “system”, it sets off all the other detectors in the house. Bless them, the firefighters were pretty awesome, and by 1:30am, they were walking back down our driveway in the darkness to load back up onto the firetruck they had left in the street. We were awake, trying to re-settle the dogs and ourselves, until about 2am.

Okay, so Sunday night I pretty much had a bad breakdown. I was just sobbing over how bad I was feeling and how tired I was and how afraid I was. I felt like I was getting worse, that my weakness was worse, my fatigue was worse, my imbalance was worse, and that now I was having trouble with my hands/arms and not just my legs.

For only the second time in the four and a half years I’ve been seeing T, I actually contacted her to seek guidance and help after-hours (or out of a normal session). The only other time I’ve done that is when my mother died. I am so grateful and so lucky that she took the time to talk to me in email (which is how I contacted her). I can’t say anything got resolved or that I even felt “better” in that moment, but knowing someone was out there to reach for–and who would reach back–was enormously helpful. Yes, Hub was here and he was being supportive, but this time it took a more confident and experienced communication.

When I finally caught my breath, I was so exhausted from struggling during the day and crying for hours that I went to sleep at 9pm. When I woke up the next morning, I called to see if my primary doc could see me, even though I didn’t think it would be helpful. They were able to fit me in just before lunchtime, and Hub took time off of work to go with me. After that phone call, I called the neuro’s office to see if he had any cancellations where he could fit me in for my test. The receptionist said no right away, because she had just gotten off the phone with someone else asking the same thing. So I asked to leave a message for my doctor, and I told him I was feeling worse and that I was having trouble with my hand/arm. He called within thirty minutes and fit me in for the EMG for two days later (that’d be today).

I went to my primary, who said she didn’t know what else to do for me except to send me to see a sleep doctor to see if I was having some kind of sleep disorder, and also to an infectious disease doctor to talk about Chronic Fatigue Syndrome. We were sitting in her office and I was so damn tired and frustrated that I literally put my head down on the edge of her desk and tried not to cry. She asked me what was going on and I told her, I was exhausted, frustrated, and scared. She immediately asked me if I was depressed. I was both annoyed and frustrated with this, because ANYONE in my shoes, with this length of exhaustion and weakness, and not knowing what was wrong, would be afraid and sad and upset. I thanked her for the offer but said I wasn’t ready to do that right now. She told me to try to stop focusing on my symptoms because I would surely make them worse by doing so, and to continue with my neuro appointment.

After that, we ran off to get my blood work done for the neuro and then we went home. Fast forward (cuz this is soooooo long), I spent most of today trying not to think about the test and/or what it might or might not say. I semi-obsessively check my laptop to see if my blood work has come in while trying not to spend time searching Dr. Google. We finally head off to the neuro office and within about ten minutes we are back in the testing room. I had read a little about the test(s) and heard both that it was no big deal and that it hurt like a mo’fo. I think I ended up somewhere in the middle.

The neuro doctor is very quiet in general, so there was almost no talking. The room had to be like 85 degrees, which I assume was on purpose because some of the testing is on muscles and maybe the heat keeps them relaxed? The first part of the test was where they put some thingys on you and then send an electric shock through certain nerves. The second part they use needles, stuck into your muscle, to record some kind of feedback. I asked what the needles were like and was told they are thinner and shorter than acupuncture needles. When he started zapping me with electricity, I asked if the needles hurt more or less, and he said “there’s no electricity with the needles” and went back to his zapping. So after another few minutes of silence and him randomly saying “zap here”, I ask him if his patients say the electricity is worse or the needles, and he says “it goes both ways.” *sigh*

The zaps range from a slight sting to a full-on-stick-your-fingers-in-an-outlet zap to OH SHIT THAT HURT LIKE A MO’FO. Fortunately, they are pretty quick zaps–up and down both legs in multiple places and along one arm and hand–and within about forty minutes we are moving on to the needle part of the test. He actually started with my arm and it really wasn’t all that bad, as long as I didn’t look at what he was doing. When he moved to my first leg, it was fine until he went into the inside of my calf and then it HURT. Especially he had trouble finding the right spot to be in and he had to sort of shift it around and push harder and that was pretty bad. The same issue happened with the other leg, but then we were pretty much done. After I got dressed, I asked him if he saw anything and he only said, “nothing jumped out at me” and said he’d have to go through all the data that had been collected during the test in the computer. I asked if there was anything I should or shouldn’t be doing, and he only said to stay hydrated and to rest. He scheduled us to come back for a follow-up for next Wednesday, so I have a week to sit and wait…

Tomorrow morning I go in for my CT Scan for my cancer follow-up. My father is driving me because Hub has to be in the office and I feel so weak and off-balance that I am afraid to drive myself. Friday I have a massage therapy appointment, which I hope I can get to, and I might have to have my father drive me again. I had cancelled my PT appointment for this past Monday because I didn’t think I’d be able to do it. I hope I can return to it this coming Monday, because I need to continue to try to make progress on my shoulder.

For now, I have a headache and I think I need to go to sleep. I have to get up early to start drinking the crap for my CT Scan, so off I go.

 

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I need a minute

I had my hair colored yesterday (more in another blog), which took about two hours. This morning I had to get up early to go to PT (her first appointment of the day) so that I could get to my neurology appointment on time.

This was my second PT appointment, the first with full treatment since initial appointments include lots of time for evaluation and pre-treatment measurements. I’d been doing the stretching exercises she assigned me since Friday, so I have been doing some work. Today, though, she did some more stretching…and it hurt. The physical therapist is a very nice, very low-key woman, who spends most of the appointments so far reassuring me that I will make progress and I will feel better. I’ve told her that I am VERY familiar with PT, as I’ve been multiple times over the years. Even so, she seems intent on keeping up with the reassurances…I guess she thinks she is being encouraging, I’m not sure. Anyway, the appointment was painful and I left feeling sore and tired.

When I got home, Hub told me he couldn’t go with me to the neurologist because he had a big meeting come up at work. My father offered to go, but I really didn’t want to have to deal with my dad’s pushiness, especially with a new-to-me doctor. So I said I’d be okay, and when the time came I headed off to the doctor’s office.

The doctor was on time, which was shocking to me, and his space in the suite was a combo office and exam room. It was a little odd, I’ve never seen anything like that. Normally you are in an exam room or you meet with the doctor in a separate office space. We sat down and he asked me what was happening. I gave him my history as best I could–including the recent bloodwork done that had all come back normal–and told him the issues I was having recently. He asked me a ton of questions, most of which I gave negatory answers to…it almost looked like he was reading from a list on his laptop! He then went through the litany of physical neuro tests–most of which I’ve been through before. When that was done, we sat back down at his desk and he stared at his laptop for a minute. Then he started saying that I didn’t fit in this category (ALS) or that category (Myasthenia gravis) or even that category (Guillain-Barré)…and each time he described WHY I didn’t fit. Having been alone, I tried to remember every reason why I didn’t match those categories, but I was busy thinking “oh, but I do have trouble swallowing!” (but I don’t REALLY) and “oh, my upper body IS weak” (but not REALLY) and “oh, I do have tingling!” (but probably that’s when I overdo or my limb falls asleep). It’s like he was giving symptoms (more than I just described) and I was latching onto them, worrying that maybe I really did have those symptoms and they were just on the mild side and what if I had missed the symptoms??

It was hard. I don’t remember which disease was ruled out by which missing symptom(s). I know he didn’t specifically rule out MS (multiple sclerosis) and I don’t know why.  I was afraid to ask. The final result was the he wanted to start with bloodwork for some muscle thing, and that he wanted to do an EMG (electromyogram). He said he had time to do it later that afternoon or tomorrow because of cancellations, but I didn’t want to do something unknown when I had the wedding this weekend. I said I wasn’t available and at that point the best they could do was schedule for the end of August. So I put it on my calendar and left the office.

I drove home, feeling weak and tired…and so disappointed, even though I really had no hopes for the appointment. I guess some part of me thought something would come of it, but it had to be pretty far buried in my subconscious. When I got home, Hub was still on the phone for his meeting, so he slipped over to greet me briefly. I said I was going upstairs to change my clothes, then decided I wanted to lie down for a while. I called my father to update him, had to listen to him talk about the time HE had some sort of muscle electricity test thingy twenty-plus years ago for a possible pinched nerve, then I stripped and got into bed. I barely settled in when Hub came in to check on me…he wanted to know if something happened that I hadn’t told him.

I cried. I don’t want to be sick again…or more than I already am. I’m tired of being sick. I’m tired of being tired. I’m tired of not knowing. I’m tired of having to change my life because I’m sick again, or more. I’m tired of having to grieve for the life I had, or the one I’ll never have, because I’m sick again, or more.

Hub hugged me, and even though I knew he wanted to hover and smother because that’s his M.O., he left me to rest. I just wanted a minute to mourn, you know? I needed a minute to come to terms with the disappointment, with the fatigue of it all. No one ever knows what is wrong with me. I’m always a syndrome…a catch-all that I’m dumped in because I don’t match any known disease or medical terminology.  I’m tired. So fucking tired.

I laid in bed for several hours–though I got up briefly to eat some soup because I hadn’t eaten or drunk anything prior to that–and just did nothing. I just couldn’t get up the energy to participate in life. My body and my soul didn’t want to body or soul.

I got up and had dinner later, and I talked with Hub like I was “normal”, but inside I’m hurting and I’m disappointed and I’m lost. Again. And writing these things has me crying again…

 

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Two year cancer update

This past week I went to see my gyn oncologist for my annual cancer check-up. Oddly, the office was very quiet and they took me back on time. Normally the place is mobbed and we wait forty-five minutes to an hour to see the doctor. I’m not complaining, it was just so weird. As it was, my original appointment was at 2pm, but the Thursday before my appointment the office called to say the doctor was going to be out of the office at that time and could we move the appointment to an earlier time. We, of course, got there about twenty minutes early, and during that time we saw my doctor wandering around casually like he had nothing much going on. Normally he’s running from one exam room to another and never comes out to the front the entire hour or so we’re waiting.

I wasn’t sure if all this was a good omen or a bad one.

My blood pressure is always good in their office. This time, though, the wrist cuff they normally use wouldn’t stay velcro’d on, which was a bit upsetting because it made me feel like my wrist was too fat. I had to stop myself and change my inner monologue, because every other time we’ve been there the wrist pressure cuff has worked. I assume this particular one was losing it’s velcro power. So the nurse did an old-fashioned manual check and again my BP was pretty awesome. Normally I get white-coat syndrome and my BP is kind of high, but at the gyn/onc’s office it’s in the normal range…and I have no idea why.

Le Dottore came into the exam room wearing an awesome royal purple tie with white polka dots. Purple is mine and my mother’s favorite color, so I took that as a good sign. I even told him how much I loved his tie and he said purple was his favorite color. We did the exam–which took no time at all–and he pronounced everything “awesome.” I asked about my yearly CT Scan, because the original plan in 2015 had been yearly ct scans every July, and yearly paps every January. This last January he said paps every TWO years…and this week he said he saw no reason for a CT. I said I thought it was yearly CT’s and paps every 2 years. He said “no reason to do paps unless there are symptoms” and basically the same for the CT scan. He said my exams have been perfect and without symptoms, he didn’t see a reason to do the scan. I don’t know if their policies have changed due to new information or what, but it was kind of stressful to hear that they wouldn’t be following me as closely as I had been told. I said I was a little concerned about not doing a CT, but that I understood getting a CT subjected me to radiation (which can actually cause cancer), so the choice wasn’t cut and dry. He said it was my choice, we could do one now or talk again next year. He said recurrences happen most often in the first two years, but even that was a low number (he said 10% but I’d read 15%). But again, he was happy to give me a referral if I wanted the CT. I asked for the referral but said I’d think about my options.

I discussed this with Hub and with T, and in the end I think I’m going to get the CT scan. I’m too worried about all the bits inside that he can’t see or touch, where cancer could be growing without any symptoms or pain. (My mother had cancer recurrence and she had no physical symptoms that she spoke of.) If I didn’t do the CT when I could have and then something happened, I’d beat myself up something fierce. And since “ct scan radiation causes cancer” is actually NOT something they can prove scientifically–it’s a guessing game because they can’t subject people to CT’s to see if they get cancer–I’ll be taking what is an unknown risk versus the actual risk of missing something growing.

I’ll be waiting until after the wedding to do the scan so it doesn’t make me feel lousy or sick this week when I have so much to do. And I’ll have the relief of knowing there was nothing to be seen that could have been seen.

Two year cancer check achievement unlocked.

 
 

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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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