Changing the standard of thinking.

I Like Having a Personal Nurse and Getting Shot

ShotIt’s been a few months now, and Beautiful has taken over giving me my testosterone injections for me since it’s so much more tolerable in my butt than in my thigh. I highly recommend it for anyone who has someone around to do simple maintenance stuff like this, but I don’t recommend pissing them off right before it’s time for your dose. ๐Ÿ˜‰

Our first intro to doing it was when we went to clinic and asked Sue if a nurse could show Beautiful how to find a good placement. If I had known it was this simple, we might not have bothered. Here’s how it went: “Grab his butt [grabbed as much of a handful as she could] and shoot him anywhere.” “Does it matter where in what you grab?” “Nope, butt is butt. Anywhere is good. He obviously doesn’t have a lot of depth to work with [thanks], so aim for the thickest part.”

I was cracking up having my shorts halfway down one side with a nurse with gloves feeling me up holding on to a chunk of my butt for 15 seconds while Beautiful watched as the nurse then shoved a 1.5″ needle in to the hilt. Yes, I was still smiling, because nurse shots almost never hurt and it was funny to see Beautiful’s reaction to such a violent stab.

For reals

So, the next week, it was time for her audition. She did good, but suffice it to say that she needed to work out how to hold the syringe to be able to draw back to check for blood and still squeeze it in, too. After that got figured out the next week, it has mainly been getting over the fear of hurting me. Truth is, it only hurts if 1) it hits a nerve or 2) you don’t thrust hard enough to break the skin. You can’t do anything about hitting a nerve, but not breaking through the skin is my only hesitation now.

She hasn’t failed on the stab for about a month now, so that fear is mostly gone. It does take some getting used to having a non-nurse do something with a needle that long, but maybe a nice uniform would help some people. Hey, it could be fun!

She does a REALLY great job for someone so new to all of this medical stuff. She sort of knew what she was getting into when she said “yes,” but I’m sure you can’t ever really know what it’s like to live with a CFer and deal with things that we deal with.

Imagine all that she’s done for me in the last 5 years:

I know that not everyone’s family can step up to do things like she has, but I highly recommend it if they are willing to try. It’s so much better to be loved on with medical care by family than calling in a home health person and dealing with all of that paperwork and bringing someone else into your life. I’ve got to give kudos for Ronnie giving Mandi all those shots (NSFW) in the rear a few months ago… and videoing it from 2 angles for our amusement. Go check it out if you haven’t seen it.

Open Talk: Most Embarrassing Coughing Fits

This entry is part [part not set] of 19 in the series What CFers Do

DisappointedToday was the coughing fit of all fits: publicly. I didn’t even have the “luxury” of having this grand mal fit at someone else’s house. It happened at church, thankfully after the service and while waiting for a meeting to start. Here’s what happened.

My best friend’s dad came over with his camera for us to take to California with us, so I was sitting there opening the case with Beautiful to my left, my mom-in-law in front facing us, and my bro-in-law and his girlfriend on my right. There was a note on the camera that said he’d switched the camera out of shooting in RAW format, so I was going into the menu to do that immediately. I didn’t remember it until later, but Mom2 was telling me about the photos on the server for me to look at and we were in the middle of a conversation about photos for the new website.

Then I had one of my coughs that sends the world black, my tongue numb, and everything goes away. Everything.

It came on without warning, no pre-coughing or anything. Blackness.

The next thing I knew, Jose, one of the elders and a family practice doctor, was over my right shoulder, Beautiful was back on my left, and Mom2 was having a clear freak-out along with her about what just happened. What did just happen? “You dropped the camera on the lens,” they said. “You weren’t answering us and you were shaking like you were having a seizure.”

“Okay, answer me this, what is her name?” Jose asked me pointing at Mom2 after I insisted that I was alright, though I freely admitted to flat-out blacking out. “Mary-Lynn,” I replied. “OK, he isn’t disoriented, which is one of the main symptoms after a seizure. Can you walk to the kitchen with me so I can test your gait? A lot of people behind you are concerned for you and I just want to be sure you are really okay.”

I have rarely ever been that embarrassed in my life. Certainly never at my home church where I’ve been since I was 16 and most people know I have CF. At that point, I still didn’t know what had happened other than blacking out and dropping the camera. “It’s not like I fell,” was all I was thinking until we started for the kitchen and then I started thinking, “what did they see? Why is that person smiling at me now?”

I’ve never felt so at the mercy of my damaged body before in my life. I had lost complete control of everything, making me extremely glad I didn’t have to go to the bathroom at the time.

In the kitchen, he took my pulse and blood pressure. Both were elevated, but within reason for such a coughing spasm. He would have been concerned if I had lower blood pressure. His O2 meter hadn’t come to life because it was too hot from being in the car, but since I was carrying on conversation fine, he let it be.

What really happened

So on the way home, Beautiful told me what I did. We were talking and I started coughing, but really badly. She was shaking my shoulder asking me if I was okay, but I didn’t respond. She shook harder and yelled louder. Still no response. That’s when the freak-outs began because people look to her to know if things are OK. Things were not OK. She got up to go get Jose, and the others rushed with her. They were only gone 10 seconds, but I’d gone into a slouch back with my head looking up and my tongue out and my arms down at my sides in stiff-fashion, still coughing hard and my whole body was shaking.

Then it was over.

I hope that never happens again. Ever.

Has anything like that ever happened to you?

Still Compliant, Still Gaining Weight

20_47-BMIAs quite a few of you on Twitter and Facebook are aware, I had another intestinal scare on Thursday. You see, Beautiful wrote about enzymes on Wednesday and every time she or I write about anything to do with blockages, something happens. Without fail. It’s really quite creepy and must stop this time. I’ll get to my lungs and weight soon, but first, it’s story time.

Thursday morning

I woke up feeling out of sorts and shrugged her off and indicated that I wasn’t feeling well when she came to wake me up on Thursday. I got up around 8:30 and started my treatments, but was feeling sore and crampy, only it wasn’t in the usual blockage area indicated from my long history of blockages. Like a seasoned veteran, I weighed the pros and cons of having an omelet for breakfast and just went for it with plenty of enzymes.

I got upstairs to start work around 10:00 and was more or less completely unable to concentrate. The cramps were coming in waves and in harder and harder force, but I can tell the difference between a resistance cramp and an uncomfortable cramp. These were the latter, no nasty, tight ball of crap anywhere to be found by exploratory pushing of my squishies. Sore, yes, but I didn’t have the tell-tale knot of disaster. Beautiful went back downstairs seeing my clear distress and got me a 20oz Gatorade and an extra Dulcolax to hydrate and flush anything that was in there.

Thursday afternoon

I was feeling better by dinnertime and insisted on eating despite Beautiful’s firm reminder that I “felt fine” before our Outback dinner for my birthday 2 years ago. [Read more…]

To Operate or Not to Operate? THAT Is the Question

Nasal polypWe’ve both been eagerly anticipating my sinus appointment today for a couple of weeks now. It’s been almost 7 weeks since my last appointment with Dr. Tabor when we scheduled my surgery for June 13th. I’ve been on vancomycin for over a month using the pulsating Pari Sinus machine that precious few people have. On a side note, that device is a dream, and I’ll be writing up something about it very soon.

We scheduled the visit today to determine if the abx were working enough to avoid major surgery. He’s not entirely certain that operating will relieve my headaches, but is “willing to give it a try.” I have to chuckle at that as a services professional myself. Of course, it will help some, but it might not be an all-in-one relief. I know what he means, which is why I am willing to go for it, but not if we see clear improvement with meds.

Interesting phenonmenon

Then something interesting happened when I was in Chicago for 4 days: I didn’t have a single headache, at least until the last morning… but that may have a pretty traceable cause. I was talking to Sue one day after I got back and told her about that strange lack of head pain and she immediately said, “allergies.” There seems to be enough of a reason to believe that our location here in piney, grassy North Tampa has been causing my extreme headaches due to allergies. We will soon see if that theory holds true as we head to So Cal on Tuesday for a week. If I don’t have any headaches for a week, we’ll have to figure out an allergy-related cure to my pain.

Back to the appointment. Yesterday morning while I was still doing my treatments, I got a call from a blocked number. It was the doctor’s office saying that won’t be in clinic [today] and will take my pre-op appointment on the first Tuesday in June as a appointment before sending me over for labs for surgery. First, I was really, really mad that after weeks of waiting, he tells me the day before my last chance to get sucked out before vacation that I can’t see him. I called the scheduling nurse and left a message to call me back if I could be seen Friday or Monday after his surgery time.

She called back in the afternoon, but I was on a call with a client, so Beautiful took the call for me (Thanks, Babe! Having you around is awesome!) and told me that he had already left down for a family emergency and would be back in time for surgery Monday, but would be operating all day. Alright, at least it was an emergency, so now I don’t feel bad about it, because I was fuming earlier that I could have gone any day this week or last week and been better off. We were even debating calling Dr. Seper to see if I could slip in for a sucking since it wasn’t really my decision to switch doctors as much as it was clinic’s choice to work with a doctor out of their hospital. I don’t think it’s necessary, given how much work I have to do before we leave, but maybe Monday would be a good shot in the dark.

So, all of that said and done, we are thinking we should call scheduling and cancel the surgery because we were supposed to have an opportunity to inspect my progress on abx. If we decide I still need to go under the Black and Decker, then we can do it as soon as he has an opening because I don’t have any travel plans for the rest of summer.

What would you do in my situation?

I Like Having a Personal Nurse and Getting Shot

It's been a few months now, and Beautiful has taken over giving me my testosterone injections for me since it's so much more tolerable in my butt than in my thigh. I highly recommend it for anyone who has someone around to do simple maintenance stuff … [Read more]

Open Talk: Most Embarrassing Coughing Fits

Today was the coughing fit of all fits: publicly. I didn't even have the "luxury" of having this grand mal fit at someone else's house. It happened at church, thankfully after the service and while waiting for a meeting to start. Here's what … [Read more]

Still Compliant, Still Gaining Weight

As quite a few of you on Twitter and Facebook are aware, I had another intestinal scare on Thursday. You see, Beautiful wrote about enzymes on Wednesday and every time she or I write about anything to do with blockages, something happens. Without … [Read more]

To Operate or Not to Operate? THAT Is the Question

We've both been eagerly anticipating my sinus appointment today for a couple of weeks now. It's been almost 7 weeks since my last appointment with Dr. Tabor when we scheduled my surgery for June 13th. I've been on vancomycin for over a month using … [Read more]

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