Got up at 5 AM so that I could get a shower in before we left for Minneapolis. Used the bathroom and got dressed. Tried waking my husband up again, since the alarm had not had the desired effect. Turned the bedroom lights on. Went into the front room and turned on the lights there, so I could start taking my morning medicines.
Returned to the bedroom and told him he had to get up. Then I laid out my clothes to wear to the infusion center. Fed our cat, then went into the front room to drink my breakfast. (Meal supplement shake, not alcohol like you were probably thinking!) Once I had finished breakfast, had to take a good bowel movement. Ended up stopping the toilet up.
My husband had to take the plunger resolve to the problem. When he was done, he had to use his bathroom which is downstairs. He came back up, so I took the three ibuprofen tablets I need to kill the pain of the water hitting my sub-pubic catheter. Went into the bedroom and got undressed. Went into the bathroom and removed my underwear. Turned the water on hot to get a warm temperature in the bathroom sink. Let my husband know that I was ready to get in the shower.
He came in and helped me onto the shower chair in the tub. Since I had gotten the water to a warmer temperature in the sink, you would think the water coming out of the shower head would be warm to start with. Never works that way, unfortunately. Took a few seconds to get the warm shower I was hoping for, but eventually it warmed up enough to start washing my back with my shower brush. Put the brush down on the shower floor and got my hair wet. Reached around with my left hand to grasp the shampoo from the side of the shower. Got my hair covered with the sham (fake) poo (shit) and proceeded to scrub my hair. When my hair had been washed, started to rinse it out completely. Made sure it was out of my eyes, then reached to the right side of the shower to get my conditioner.
Smoothed my hair down then started applying conditioner. Once my hair had been thoroughly, conditioned put the bottle back where I had gotten it from. Picked up the soap from the shelf and started washing my body. When I finished soaping up, rinsing started. Used a plastic cup to help reach where the clean water from the shower head wasn’t reaching. Then I started rinsing out the conditioner I had applied to my hair. When that was complete, did one last rinse down my back, then turned the water off.
Yelled to let my husband know I was finished with the shower. He came and put me on my wheelchair. It was then that I noticed I had forgotten to put what we affectionately refer to as my “crack” (because it dries my crack) towel on my wheelchair. Had him grab it, while I transferred to the toilet. He put it on my wheelchair, so I transferred back to my wheelchair. He used my bath towel to dry his hands then he gave me the towel so I could get myself dried off. Hung my towel back on the towel rack, turned off bathroom lights, then went into the bedroom.
Got fully dressed and returned to the front room. Had my husband apply a small amount of Lidocaine and Prilocaine cream to the port on my chest that goes directly to my jugular vein. That way it would be numb before the nursing staff had to access the port for the infusion at 11:30 AM. For some unknown reason the numbing cream has to be on for at least 3 hours before nurses can safely accessing my port, have really good reflexes if I am not fully numb.
Since I was now completely ready, he went downstairs to take a shower. I grabbed my shoes out of the bedroom, than came back and started doing a fill-it-in puzzle until he was ready to get his breakfast. Put my shoes on, then moved the bag with all my supplies for the day out where he could get to them.
He took my bag and went to move the car to the driveway for our detached garage where my ramp ended at the gate to our backyard. He came back into the house to brush his teeth. I grabbed my emergency inhaler and cell phone and went out the back door for some fresh air, since it was still cool outside. Came back up the ramp and reopened the back door so he would now where I had disappeared to. Went back down the ramp and out the the back gate. Heard the car make a little noise. He had unlocked it from across the yard!
He locked up the house and then came and helped me get into the car. Since we were way ahead of schedule we decided to go ahead and visit the store where he had planned to go after he dropped me off for my infusion. The store is where I get my urine bags from. Had used the last of my overnight urine bags a few days ago. He was also supposed to get me a new leg bag, The leg bag is what I use when visiting a normal doctor, since it can have urine samples drawn from it. He came out of the store and we drove to the infusion center.
The center was short staffed, so they didn’t come out to bring me back until 11:45. Went over the recliner the nurse had selected for me to get my Tysarbi infusion in. We ran through the required questionnaire. Like what was my full name, had I experienced any new or worsening symptoms, had any steroids administered, or other new medications. Since I give any changes to my neurologist before I had arrived, told her he had cleared me for my infusion. She got the apple juice and two ibuprofen tablets I had requested. With that complete, she placed the supplies to access my port on my right side of the table. Asked if she was going to check my blood pressure, so I could finally cross my legs. She had thought it was already done. She got the equipment, took my blood pressure and temperature. Now I got to cross my legs like normal. Unbuttoned my shirt so she could clean the cream off my port.
I took my face mask and put it on. Not sure why my body decided to try chewing on the face mask, but the nurse asked if it tasted good or something. Hadn’t even realized what I was doing. She pulled it out of my mouth and we both started laughing hysterically! At least I made her day. For the record, the masks don’t have any flavor to them. She cleaned the site and sterilized the area before inserting the infusion needle. Since I had let the cream on the needed time, didn’t even feel a thing. There was a good blood flow coming from my port, she flushed saline down the port to remove the traces of my blood from my line. Then she hooked me up to receive my Tysarbi dose. She asked if I needed anything else. Told her I brought all the supplies I needed with me like normal.
Began playing solitaire on my tablet, while eating a fruit and grain bar for a snack. Washed it all down with the apple juice the nurse had given me. After my snack was complete, read a werewolf romance book on my tablet. Normally, prefer vampire love stories but this was a good read. Went back to playing solitaire. The infusion machine started beeping like it was done, but 9 out of 10 times it lies. It was lying again. Another nurse came and jiggled the line and quieted the machine. She told me I still had about 15 minutes of dripping to go. So went back to playing solitaire.
Finally, the machine started beeping again. Was back to the first nurse. Asked her if it was lying again. Nope, I was actually finished with my bag of medicine. She unhooked me from the machine, flushed my line with saline again. Asked her to place my wheelchair where I could reach it, because I needed to use the restroom. (Had already tried to reach it from the recliner they had put me in. Have arms that are as short as the rest of me!)
She asked if I needed help wheeling over to the bathroom. Told her the exercise would be good for me to move myself over on my own. I get cramped up from sitting still for so long. The bathrooms actually inside the infusion center are much better than the public ones in the building. Was washing my hands after using the toilet and accidentally managed to spill a little of the soap on the container. Was great soap, but it had the appearance of human snot. Let the nurse know what was actually on the soap bottle, so it could be cleaned up. Have a tendency to make bigger messes when I try to clean things up for myself, so I didn’t even attempt it.
Returned to the recliner I was assigned to be in. Went back to playing solitaire. They set a timer when our infusions are complete so they can observe us for a full hour. The hour drags by extremely slow, makes watching paint dry seem like an interesting adventure! The timer went off, the nurse came over to push heparin down my port so it would remain viable for next time. She took my blood pressure one last time. I called my husband to let him know I was on my way out of the infusion center. The nurse pushed me with my arms full of my bag, emergency inhaler, and my cell phone. He was no where to be found. The nurse took me out the door, I told her he was probably using the restroom. Sure enough, just as she started walking away, he came out of the men’s bathroom.
He made the comment that she didn’t stay to talk with him like normal. Let him know they were really short staffed today. He took me out to where we had parked our car, and helped me get in to the front passenger seat. Once I was safely out of my wheelchair, he took it and collapsed it to put in the back of our vehicle. Traffic was behaving oddly (turns out there was an accident killing one of the workers at the new Viking’s stadium). Took a few wrong turns to make it safely out of the area of the clinic.
Headache started on the right side of my head. Ignored it like normal. We made it back to our house. Jason got my wheelchair out and brought it to my side of the car. Had more strength from the infusion, but the pounding in head kept me a little slower than normal. He put the my bag on my lap, put the other bag containing my urine bags on top, then he gave me my emergency inhaler and cell phone back. He pushed me with all the crap on top up the walkway to the house.
My husband unlocked the house doors, took my bags and let me take myself in. He let me start putting my stuff back where it all belonged. Then he left me to get out of my shoes as he went to go get us a meal from the local Culver’s restaurant. While he was gone, I grabbed a more comfortable pair of shorts and went into the bathroom to empty my urine bag. With that complete, I removed the bag and put on my catheter plug. Put the empty urine bag up on the shower chair, put on my comfortable shorts, then cleaned up from using the restroom.
Took my normal 3 PM medicines, since I missed getting to take them. Our cat had barfed on my husband’s recliner while we were gone, so I cleaned that up. Heard the animal getting sick in another room, so poured myself a glass of cranberry grape juice and put it on the kitchen table. Then went in search of the mess I had heard being made. It was right in front of my electric wheelchair by the back door. Cleaned that up, and heard it get sick again! This time it was in MY office! Not in one place, but two. Was coming to my wits end with the cat! Got those messes cleaned up. Was finally washing my hands when my husband made it home with our meals.
Cat vomit makes my husband lose the contents from his stomach. That’s why I clean the messes up for him. He put my meal on the table by the drink I had poured. With a pounding headache, I began eating. It was late enough by the time I finished, took my quarter to five pills. noticed I had forgotten to put my anti tip bar back on my wheelchair. Got that issue resolved. My spouse went down to his man cave to play video games. My headache and I switched the television to the right channel to receive the 5-o-clock news when it came on.
STILL HAVE POUNDING HEADACHE!!!