Have to have a blood test then an infusion in Minneapolis later today
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Category Archives: Infusion Update
Prompt for the Day: “Out of Reach”
The choice of words for the Daily Prompt for today is “Out of Reach“. When you only stand a lowly five feet one inch, what isn’t out of reach? If you want to be even more realistic am a short person confined to a wheelchair, due to multiple sclerosis.
My life is basically out of reach these days. Dreamt of being an astronaut when I was little, didn’t find out until college there was a height requirement. That dream was several inches out of my reach. Dated a boy in college with major mommy issues. Ended up breaking up with him. The ass wipe then broke into my apartment and stole a pair of my underwear! Tried getting the local police to do something to help. They just about laughed at me to my face. So the security of getting police help was way out of reach while living in that apartment complex!
Took a chance using a local dating service. Met some more real losers. Answered a want ad from the local newspaper of a guy looking for companionship. He was better than the first people I met from the dating service, but he just wanted a one night stand. Finally saw a guy from the dating service that looked interesting. Only problem was he worked nights at the local G.E. plant. We agreed to meet at a local restaurant after he got off work one night. Basically ended up being just about love at first sight. The only thing out of reach was we met after midnight and I had an early college class the next day. We went our separate ways with the exchange of phone numbers.
He called me up in the after noon of the next day. At a more reasonable hour we met again at the same place. We started talking about where we were currently living. Told him what road I lived on. He then told me the name of the apartment complex I lived in! Scared the shit out of me. Was this guy a stalker or what? He laughed and told me he lived in the same complex! Just on a different side of the mass of buildings. We each were using different laundry areas or we would have met earlier. After we had finished our meals we went to our own vehicles.
He called me later to talk before he left for work. I was smitten. He was not so far out of my reach!
Set up a Blogging Event for assignment in Blogging201
Created a blogging event to meet the requirement for today’s lesson in my Blogging201 class. Wanted to give the blogging community a place to talk about how they deal with health problems. You never know maybe the person in a different country has better ways of feeling better!
They may have had really good experiences with a particular hospital or doctor. Maybe they lived through what amounts to a horror story. Set up a page to host the event. It can be found at: https://hallenterprises132.wordpress.com/how-do-you-sur…es-in-you-life/
Description and Basic Instructions for Participating: Everyone has a general way of dealing with their health crises. What I want to do is open a place for sharing wisdom, horror stories, and just general ways you personally cope with your health related difficulties.
Set up a e-mail address to receive event related messages. It is : saintpblogging@gmail.com.
Actual name of the event: How do you survive health troubles in you life?
Type of event, I chose from the long list was: Non-Fiction & General Blogging
The deadline for the event ends on Thursday October twenty ninth.Event Deadline: 10/29/2015
The link to my event specific page is : https://hallenterprises132.wordpress.com/how-do-you-sur…es-in-you-life/
Infusion this past Wednesday
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!!!
Courage Kenny Rehabilitation Appointment
Had an appointment yesterday with a doctor at the Courage Kenny hospital in Minneapolis, Minnesota. Dreaded the appointment, because I had been through three weeks of hospitalization for rehabilitation back in 2009. Was terrified they would try locking me away in a hospital again! Turned out the doctor was easy to get along with. The only problem is the exam room was way too warm for my body’s liking.
Have low blood pressure normally, except when I visit a doctor’s office. Then my pressure shoots off the roof! Been scared of doctors since I was younger. Hated needles and hated the doctor I saw back then. He kept telling me I was imagining my problems. Had to move away to college to discover I had multiple sclerosis!
She went over all the paperwork, I had typed out instead of writing like I was supposed to do. Figured the doctor would actually want to be able to read the paperwork, instead of trying to interpret my chicken scratch of handwriting I currently am able to produce.
When she got to the part about my actual bowel movements, she determined that my chronic constipation may be the underlying cause of my urine tract infections. She suggested I take a single Colace pill a day. Had Colace on hand, but had been afraid to take it too frequently to avoid becoming dependent on the drug. The doctor assured me it was not habit forming. So now I take a Colace pill every morning, after I squirt my Flonase up each nostril. Manageable solution for my constipation at last!
My back pain is a lot better know that I am not constipated, too! The blood in my urine does not seem to be a problem now, either. Still urinating very frequently, so am not sure my urinary tract infection is truly gone.
Interesting few days
It started with an appointment with a nurse from my neurologist’s office. She was going over the results from my neuropsych testing back in June 2015. Turns out they discovered I was color blind! Knew that since I was in high school. Am both depressed and anxious. No surprise there, either. The appointment cost my normal co-pay for a specialist of $50. They also determined I had a spatial vision problem. In English it means I have problems judging distances. Learned that one a long time ago the hard way. Putting a full glass of liquid on a flat surface like a table is a challenge for me. Good thing I haven’t driven since before we moved into this state back in 2008.
So the Physician’s Assistant prescribed Lexapro 5 MG once a day for the depression and anxiety. The only side effect I’ve experienced so for (maybe) a migraine like head ache. The reason I said maybe is there was a pressure front moving through the area at the time. Pressure fronts can trigger migraines in me.
After that was. over went downstairs for my normally scheduled infusion of Tysarbi. While there, I asked the nurse if Tysarbi could be causing my case of Athlete’s foot. She said it is possible since it lowers my immune system’s ability to fight off infections.
The next day my husband went downstairs to start our laundry, when my cell phone rang. It was my father-in-law calling trying to get in touch with my husband. He had been in a car accident while on his way back from a trip to the state of Texas. He told me not to worry, he had just bruised his hand a little. Told him I would have to hang up so that I could call my husband. Called him and asked him to call his step-father who had been in an accident. My husband got in contact with my father-in-law and agreed to meet him at the mechanic where the vehicle had been towed to. We used to use the mechanic before we moved to our house. He got the clothes in the wash then left.
Got a call from my husband when he arrived at the mechanic’s. The vehicle will probably have to be totaled due to the damage. His step-father had done a heck of a lot more damage to himself than he let on to me. My husband took him to the urgent care clinic to have him looked over and get his hand X-rayed. Then he contacted his mother to let her know where her husband was! My husband grounded his step-farther from driving for a month. When his mom arrived, she grounded her husband too. Turns our he had broken his hand. That is JUST a little more than a bruise in my opinion.
My husband came back home, then the company we purchased my husband’s motorcycle from came to tow the our motorcycle away because the brakes were no longer working properly. I have still not had the chance to ride it with him yet! He is not a happy camper with his motorcycle in the shop!
The next day, my husband had a chiropractors appointment in the morning. He got his back adjusted then went grocery shopping for the week ahead. It was around 3 PM by the time he got back home! Once home, he got a call from the motorcycle repair shop letting him know the problem with his motorcycle was from a problem that had a recall out to be fixed by the manufacturer.
They weren’t authorized to do the recall work required. They towed the motorcycle at their cost to a company in the area that could take care of the repair. It will be fixed there then returned to the place we had bought it from for other repairs that we had requested they complete while they had it. Brake light modulators for safety, both of us agreed was well worth the added investment!
My father-in-law is now resting safely at home with his wife and cat. Our motorcycle is in a different repair shop than the one we purchased it from. No clue when we will have it back. And I still have NOT gotten to ride the machine, yet! No clue why I miss it.
Creating a Feature on my blog Updating how my Infusions are affecting my Multiple Sclerosis
Our assignment for today with the Blogging 101 course was to create a Feature to add to our blogs. Since most of my blog posts deal with my health in some way or another I am creating an Infusion Update category that I want to include in my blogs at least by evening on every Thursday.
My infusions tend to always go well, it is just what happens on the 28 days between each infusion that is interesting. Some times end up with a UTI (Urinary Tract Infection) because my immune system is lower than most people’s is due to the drug that is infused in my body. Also means I tend to get sicker than normal. If my husband is exposed to the slightest bug at work, it may not affect him, but I’ll end up coming down with whatever bug is going around.
Got a call from the manufacturer of the drug Tysarbi, which I get infused into my body every 28 days, today. The lady wanted to know how the medicine was preforming for me. Explained that it worked great back in 2010 when I started on it. But by early 2012, the great feeling I had gotten from the lessening of symptoms started wearing off after 3 weeks. By 2014 the good feelings would last only 2 and a half weeks. Now I have total loss of cordnation after two weeks.
Only 5 more days until my next Tysarbi infusion! Fortunately, our house is set up for me to move around in safely with during my periods of no coordination. Especially since I am uncoordnated except for the 2 weeks after my infusions!
Exciting day – new cushion for chair seat!
Man who originally delivered my wheelchair back in 2013 delivered the replacement cushion for the wheelchair yesterday! (Unfortunately, the cushion needs replacing after two years. Talk about faulty design!) When the chair was originally delivered, he had to take the frame apart a little to remove spacers in the frame so it would fit through the bathroom door in the crappy apartment complex where we were living at the time. Was told it was a handicap accessible apartment when we moved in!
Now we live in a house that we purchased and moved into, in a nicer city that we can make changes to home as needed. Have a wheelchair ramp from my back door to the outdoor gate. Now, weather permitting, I can come and go as I please. The main floor of the house is completely accessible!
Had the gentleman park in the driveway of our detached garage, then enter through our house’s back door. He got the board from my old seat then added it in the new seat cushion. Now I have a much more comfortable chair, like I had when I first got the wheelchair back in 2013. While he was on site asked him how to tighten my brakes, because they were failing to hold the chair still on a regular basis. He taught me that all I needed was a few turns with an number 4 Allen wrench. My eye sight is so bad that I had failed to see that the chair had a place that required adjustment by Allen wrench.
Now my husband and I can take care of the chair, since the owner’s manual that came with the chair hadn’t told us how to keep the brakes tight. Asked the gentleman about what it would take to replace the other anti tip bar an my wheelchair , since it was damaged after the first ice / snow in 2013. Apparently, my health insurance should cover the replacement! If I had known that, it would have been replaced a long time ago.
The apartment complex had failed to clean the handicap parking areas after the winter mix fell. Was able to safely get out and go to my infusion appointment, but when we got home it had snowed even more. So getting from the car to my wheelchair cost me the use of one of my bars! It was so badly bent that it could not be reused. My husband was able to cannibalize the bent bar’s insides. He inserted them in the bar that was not bent, but had lost it’s inside parts. With the unbent bar and the guts from the bent bar, he was able to fit my chair with the left anti tip bar. So have been surviving on the one bar since winter of 2013.
Want to be able to do some gardening next year, but will need the chair to be able to get around the back yard safely. Don’t feel secure with operating it with just the one bar on it like I have been doing.
Got my infusion on Wednesday!
Needed it since two weeks after my last infusion!
The infusions are not lasting as long for me as they did when I started on this medicine back in 2010. When I first started getting Tysarbi infusions, I would be able to fully function until my next dose 28 days later. 2012 started seeing a decline in the length of benefits. Would only remain functional 3 and a half weeks after infusions. During the second half of 2014 went down to 3 weeks flat.
Now the infusions only last two weeks. Then I am back to being completely clumsy 24 hours a day. Good thing the house we purchased is set up for my lack of coordination! Have handle bars on the upstairs bathroom toilet and a safety rail on my side of the bed in our bedroom.
Even better is the wheelchair ramp that leads from our main level back door all the way to the gate out our fence by the detached garage’s driveway! Now I can actually leave the house unassisted. Whole new concept, independence!
Saint P. Blogging 