TELL ME ‘BOUT THE GOOD OLD DAYS

March 26, 2025

The good old days, of which I speak, are those not so good old days when I had regular arthritis flare ups, serious chronic pain and worried about losing more range of motions. And guess what? Those good old days have come back to visit!

Yes, I think I mentioned that I woke up the day after the first immunotherapy treatment with a JRA flare up. Well, every day has been the same. Some days are quite bad, with every joint affected and lots of pain in any movement. Some days are mild, noticeable, but easy to manage by just ignoring it. I never know what the situation will be when I wake up each day. I’m trying to manage it with little medical help. Ibuprofen helps some, but ibuprofen can cause bleeding, and the immunotherapy can cause bleeding as well. They only want me to use it sparingly, and only if I absolutely must. I didn’t realize how little trouble I had with the JRA anymore, other than the inconvenience of the loss of dexterity and range of motion after a lifetime of the damned disease. Now, I’m noticing the difference, because this is like it was in my childhood or young adult years. Frustrating.

And now, let’s talk roller coasters. Not the kind that races up and down hills on tracks at amusement parks, but the roller coaster of life these days. This past Thursday was a week since the first treatment. I woke up Friday with some fairly strong stomach pain. Not like what I experienced last November. That was the worst stomach pain I’ve ever had. But this was similar to some degree, running across my upper abdomen. At the same time, it also felt like heartburn, that acidy feeling. Nurse Laura told me to call if there was absolutely anything new. Was this new? Was it just a different rendition of the occasional stomach trouble I get? I didn’t know. Eventually, I did call the triage line, where they took the info and reported it to Dr. Z. He advised monitoring and if the pain got worse, go to the ER. Well, damn, I wasn’t going to do that, unless it became as bad as last November. Seriously? Go to the ER, wait hours upon hours, and be told to go home and take anti acid meds? Yeah, I decided to wait it out. By Saturday, it was definitely completely like heartburn, like I ate something that didn’t agree with me, and by Sunday morning, it was gone. End of the first roller coaster ride. Grab those safety bars!

In the middle of the night, Sunday to Monday, I woke up with a terrible pain in my left side. NOT MY HEART! It was located below my rib cage and above my hip. It felt muscular. It was bad, very bad. I could breathe but not take a deep breath. I could move cautiously, but every movement hurt. I couldn’t turn on my left side. I was freaked, definitely freaked. I’d never experienced anything like it. This wasn’t in a joint, wasn’t in my abdomen. I wasn’t sure I would be able to get out of bed.

At around 5:30 in the morning, I unconsciously took a deep breath and cried out loud from the pain. At that point, I yelled for Doug, who heard me, thank God, even though his room is at the other end of my house. I knew I could not get up on my own, and I was scared.

Doug came running—what a fantastic friend. I explained and asked him to grab the remote for my bed and raise me to a sitting position. I have one of those fun Sely beds with a remote to raise the head of feet. He raised me up, and moving that way, not using my strength, didn’t hurt at all. Doug helped me move my legs off the side of the bed, and then I put my arms around his neck, and he lifted me out of bed. There was no pain. Wonder of wonders; miracle of miracles.

I had a dilemma, because I had to pee, but I wasn’t sure I’d be able to get off the toilet on my own. When you’ve been best friends with someone for 26 years, there’s almost nothing you won’t do for each other. I did my business, and Doug came in and lifted me to my feet. Best friend ever! I did call Dr. Z’s office over this, because I just didn’t know if it was some weird muscle thing, or something to do with the treatment. Fortunately, he was the on-call doctor, and he said if it got worse, or affected my breathing more, call him back. I didn’t need to call back. I took ibuprofen throughout the day, and by bedtime, the pain was down to a light pain occasionally, and the next day it was gone. For that time anyway. Better grab those safety bars on your roller coaster car again.

The next day my stomach was on fire. This was burning. It was acid again, not pain in the sense I think the doctor means when he says call if I get stomach pain. I blamed this on the ibuprofen I took the day before.my system isn’t used to taking that much ibuprofen anymore. Before my kidney removal in 2021, I took ibuprofen regularly for my arthritis, and I took something like Zantac to prevent the stomach pain that goes along with lots of arthritis meds. If people don’t know, Tylenol does not counter inflammation, so it is not an appropriate med for arthritis. So, Tuesday was painful. I tried Zantac. I tried the nausea medicine Dr. Z had prescribed, all to no avail. In the middle of the night, I had to get up twice to throw up. ugh. Eventually, after about 24 hours of this, and vomiting my guts out, everything was fine and has continued to be fine. Hang on, there’s one more incident.

In an effort to keep my body as strong as I can, and to exercise against the negative effects of these flare ups, I started exercises classes with a company called Couch to Active. The owner developed this exercise plan to work specifically with blind people. There are personal classes and group classes. I had a personal session today, and when I got up from some things she had me do lying on the couch—which I’ve done in the past multiple times—I had a big old pain in my back, sort of by where I had that pain the other morning, but more toward the edge of my back. My coach was freaked out, thinking we’d done something wrong in the exercise. I told her about the Monday morning fun, and she thought maybe this was another manifestation of whatever was going on with my muscles in that area. We did some gentle closing things to try to loosen things up, and it did help. Sadly, yes, I took two ibuprofen and am just praying hard that it works right away, and I don’t get stomach ickiness again. I even took some Zantac right away too. Maybe that will help. The pain is already better, so maybe … I guess we’ll see.

So, life has been a big old roller coaster ride the last few days. I’ve had some quiet melting down, alone in my bed at night, stressed about all this, worried that I’m ignoring potential side effects or something, wishing hard that the arthritis would go away. Just from typing all this, every joint in my hands and arms are aching and stiff. I have to stop frequently to straighten and relax the joints, elbows, wrists and all. It’s one of the days I’m feeling down about it all and so tired.

Doug goes home tomorrow, but my wonderful sister moves in again. In the midst of feeling down, I can still feel blessed and thankful to have such a friend and such a sister. I’m so lucky!

THE FIRST INFUSION

March 14, 2025

Yesterday was the first infusion treatment. I was feeling quite anxious before, in the days leading up to the treatment, and on the day itself. Everyone around me was feeling quite anxious as well. The first two treatments I’d had either had so many side effects or didn’t work at all. Though medical types kept telling me that immunotherapy is so much easier to tolerate, and that most people don’t have a lot of nasty side effects, I didn’t kick myself over the anxiety and fear.

Rosie picked me up in plenty of time, and we headed off, my guide dog, Shani in the back seat. We found the place with no trouble, and parking was near the entrance. When we entered, there was so much noise, people laughing and talking, the place echoing everywhere. It ramped up my worries quite a bit. But that place wasn’t the infusion area. We went through a door, where blessed silence and calm prevailed. We checked in, and in a few minutes, they were calling my name to go back to the infusion room.

The room was a big open place with cubicle type areas, half walls on either side and a curtain for privacy. We walked down the long room, passing other patients, until we got to chair 20, my cubicle. There were two nurses and they had me sit in a relatively comfortable recliner type chair, and that’s where I stayed until time to leave.

Both nurses, Sandy and Cassie worked with me. I was impressed with how they did everything, because they verified each other, from accessing my port to starting the meds. Neither made an action or decision without the other’s confirmation. This made me feel safe and I started calming down.

The first step was to put a mask on my face and a drape over my chest, because they have to keep the area clean and sanitary to prevent infection. When Cassie inserted the needle into my port, there was just a tiny pin prick and no other pain or discomfort. As they prepared to start the infusion, they kept repeating the info to each other. “480 MG, 30 minutes, 316”, phrases such as those. They started the pump, and we were on our way.

They did have food there, drinks, everything from sodas to coffee and tea, even hot chocolate. The food ranged from chips and cookies to sandwiches. I had a coke, but I wasn’t hungry, so I didn’t try out their food. Rosie had water.

The atmosphere was calm and unhurried, other than various monitoring devices around the room beeping for things like batteries or infusion ending. Rosie and I talked the whole time. I was calm, not stressed out at all, and felt nothing as the meds infused my system.

One thing I was glad for was related to the dressings they used to keep the needle in place. They noticed that the tape used by the port insertion people had damaged my skin, even to an allergic reaction to it. My skin has been bright red, painful or itchy, with some actual damage, since I got the port. The nurses at the infusion center used materials for sensitive skin, and it was so much better.

Once my infusion finished, one of my nurses told me to stay for half an hour. They wanted to monitor me since it was my first treatment. They reminded me several times of various side effects and when to call my doctor about any, but they also kept assuring me that most people tolerate this treatment well.

At last, we were allowed to leave, and we wasted no time getting out of there. We made our usual Starbucks stop on the way home. I was feeling tired, worn out, mostly from the emotional roller coaster of the past days, and I went to bed fairly soon after reaching home. I got up to feed Shani, then went back to bed and slept all night until about six this morning. I already feel tired again, and I’m writing this around ten in the morning. *shrug*.

So far, I feel fine. None of the scary side effects. But sadly, I did wake up with a pretty major arthritis flare up. This was something the doctors couldn’t predict for sure, but something that was possible, since my immune system is already compromised from the JRA. It’s affecting my neck, shoulders, elbows and wrists. My leg joints, other than ankles, are artificial, so no problems there yet. This could be coincidence, but I’m doubtful of that. I’ll just have to watch it and hope it doesn’t get any worse than it is.

I have my first infusion today and will be leaving for that in less than an hour. i’ve been completely wrapped up in my head over this since last week, when I got the port. I feel overwhelmed and discouraged about it all. One treatment made me too sick to continue, and one treatment didn’t work at all. What will this one do? Will it affect my arthritis? The nurse told me to report “anything new” to Dr. Z’s office and didn’t go much in to possible side effects. Just take how I’m feeling generally healthy now and report new symptoms. Nice. Doesn’t really tell me much, what to watch for specifically, how to deal with anything that comes along. Oh well. Rosie will be here in about half an hour, so i’ll go for now. Not sure if I’ll update today, but hopefully tomorrow.

LONG DAY OF PORTS

March 7, 2025

Yesterday was port Day. It was a long day, exhausting, painful, and not necessarily a simple process. I’m going to try to keep this short, because I am in a lot of pain.

My appointment was at eleven, but they wanted me to check in ten minutes before that. Rosie drove me, and we got there in plenty of time. Showed my ID and medical insurance, signed my life away, and a nurse came to show us to our hang out and wait area.

I think there were about six nurses getting me set up. First I had to change into a gown. Then a male nurse covered me in warm blankets. Yum! so nice. In a flash, I was hooked up to a heart monitor, a blood pressure machine, an oxygen monitor, blood was drawn, and IV pieces inserted and taped down. Every one of those six nurse asked me the same three questions, multiple times.

“what is your first and last name? What is your birth date? Why are you ?”

Rosie and I joked about me replying and adding, “what is your birth date and why are you here?” lol.

After that busy 20 minutes, it was time to hurry up and wait. And wait, and wait, and wait. Fortunately, Rosie and I never run out of things to talk about. However, why on earth do they ask the patient to be there at a certain times, when the procedure won’t even begin for at least two hours, maybe more? I just wanted it to get done. Waiting just gave me time to get nervous. And I was starving and thirsty. The nurse who called me the day before told me nothing to eat or drink after midnight, and here it was about 12 hours, then 13 hours since then, even more since I’d actually eaten, and nothing was happening but me getting hungrier!

A little funny bit here. My heart monitor told us that my heart had skipped a beat. Well, that’s such a common theme in love songs or romance novels, and she and I began making up silly lyrics about hearts skipping beats. One example from me was

“My heart skipped a beat,

When the blood pressure machine began to squeeze.”

As an aside, I hate electronic blood pressure machines. They hurt my arms so much! Rosie says I should use the phrase about my heart skipping a beat, somewhere in the YA fantasy I’m writing. It’s turning out to have a lot of humor in it, so I think I will add that line somewhere.

At last, around 1PM, one of the procedure nurses, Priscilla, came in to talk to me and explain what was going to happen. The doctor was finishing a procedure, so it was still half an hour before they came to wheel my bed to the procedure room. One cool thing is that from the time you get into your assigned bed at the start of check in, that’s where you stay. They wheeled me to the procedure room, turned me on my side, put a board under me and whisked me to the procedure table. My bed waiting patiently for my return.

There were about five or six people, including the doctor, in the room. Priscilla would be responsible for giving me the drugs, under the doctor’s supervision. First she asked what kind of music I’d like. I asked for oldies, and they found an oldies channel on Pandora. That made me smile a lot. I noticed that the staff called the doctor by his first name, Robert, so I will refer to him that way. It tickles me, because I think of the Beatles son DOCTOR ROBERT. Doc Robert and his procedure assistant Gordon, checked out my chest area—now now, not that!—to see where would be the best place to insert the port. They described the process, telling me they would be stabbing me with needles that would sting and burn, to give me lidocaine and epi. They also checked out my neck, I guess for the blood vessel. The lidocaine didn’t burn at all. I’m tougher than that. But the guys touching my neck, squeezing it a little, nearly had me flying off the table. I’ve always reacted badly to that kind of thing, can’t even have blouses that button up against my neck.

Priscilla added the drugs to my IV at some point, because I began to relax. I asked her what she was giving me, fentanyl and something that sounds like “ver said”. I asked my Alexa how to spell those, but she didn’t answer me for the “ver said”. Lol. They had told me I’d probably stay awake, but I don’t remember anything much more, until they told me were were done, and they were moving back to my peacefully waiting bed.

Once back in my original spot, Rosie rejoined me, and we had to wait half an hour or so. The hospital had to make sure I was recovering okay, before they could let me go. There were some instructions about handling the dressing, when to change it, when it can come off, when I can shower, but I don’t remember a thing beyond the first dressing change should be after 48 hours. We have paperwork, and when Rosie comes tomorrow to help me with the dressing change, I’ll have her read it all to me. The dressing is miserable. there’s a big pad of stuff taped over the port area, and there is at least tape one a good part of the front of my neck. Due to limited range of motion, I can’t actually touch my neck, but moving my head, pulls on the tape on my neck. The port installation area hurts a lot, and the neck hurts, and it all also itches.

Well, by the time we left, I was so incredibly hungry, and we stopped at McDonald’s. We ordered a cheese burger for me, only catsup and mayo please, a double cheese burger for Rosie, one bag of fries, and a milk shake for me. However, when we got our bag of food, we also had an extra bag of fries, a box of four chicken nuggets. My burger only had catsup, and it also had onions and pickles. I ate my whole burger, two nuggets, a few fries and my entire milk shake! Would you say I was hungry? I was!

When we got home, I gave Doug a brief update, hugged Shani who had stayed home with Doug and his dog, and went to bed, where I stayed until five this morning.

I’m in quite a bit of pain, depending how I move my body or my shoulders, or my head. I’ve rested a lot today and will probably go back to bed in a bit after some food. Seems like I’m still hungry! I wish this dressing and tape could come off NOW! I was going to say, I don’t mean to whine, but damn it, I do mean to whine. There a pocket in my chest with a foreign object that is somehow connected to something in my neck, and will be sued to deliver what amounts to poison to my heart and then to the rest of my body. Yes, I’m whining. The port process and recovery was a lot more than I had expected. But tomorrow will come and likely I’ll feel better. Maybe.

This turned out a lot longer than I meant it to be! Sorry folks. Thanks for reading and for all the support.

WARP SPEED

March 3, 2025

Well, when things happen they happen fast, or at least in this case they are. I saw Dr. Z just on this past Monday. On Wednesday the hospital called me to schedule my port installation. The next day, Dr. Z’s office called to schedule my teaching appointment. And yesterday, the infusion center called to schedule my first treatment of the immunotherapy. A few hours later, someone from the hospital called again to pre-register me for the port and the infusion.

So, this Thursday, March 6, I’ll be going to the hospital to get the port. This means a long 4 to 6 hour day there. The prcedure takes approximately an hour, but of course there will be the early part where I go in and get set up on various monitors, and then most likely a lot of hurry up and wait. The procedure means twilight sedation, so I expect they’ll keep me a while afterward to monitor how I am doing. I’ve been doing some research on getting a port, and it looks like it will be placed either on my chest or my arm. It’s under the skin, so once the spot heals, it’s not like it sticks out or gets in the way. They have to place it where they can access a large vein, so the meds get into the blood stream easily.

The teaching appointment with Nurse Laura at Dr. Z’s office will be on the Monday following the port placement. That’s March 10. I’m thinking of bringing one of my devices to record the appointment. There are so many potential side effects, and a number of things I’m supposed to call the office if they occur.

The first infusion is on March 13. This first one will take approximately two hours. They said after that it will be about 90 minutes. They told me I’ll be enthroned on a comfortable recliner. I can have one person with me, and I can bring devices, books, whatever I need to pass the time. I practically had a panic attack after the call to schedule this appointment. I had the beginning of symptoms. I felt my heartbeat speed up a bit. I felt myself starting to pant. I was alternating between cold and warm. In an attempt to run away and revert to childhood, I guess, I went to my bedroom, got in bed, pulling the covers up to my chin. The dogs joined me there, and I got my book player. Curled up with my back against my dog Shani, I stayed there for about three hours and read, calming myself down and trying to forget.

That’s about it for this time. I’ll update as I can. I’ll update after the port insertion for sure, though that will likely be the next day or so. Warp factor 10, Mr. Scott!