Oh my

 Well...yesterday I began infusions of a new miracle drug called Actemra at the Infusion Center.  About 7 minutes into the infusion I started  to feel "funny"  ....my throat felt scratchy and constricted.  Something was not right.  A heavy weight descended on my chest, like I might drown.  It was hard to breathe and difficult to swallow.

Luckily Nurse Lynn was there within seconds and stopped the IV and began to administered other meds.   She called a code and soon the room was full of Nurses and a Doctor...more meds were given after another bout of feeling "more funny" ...finally I started to feel better but was still wonky and then began to feel better....just tired. 

I will live to see another day.  The meds made me real sleepy and I spent the afternoon asleep.   Far Guy was with me for the infusion and kept watch over me in the afternoon. 

Darn.  I failed another med.  It seems hopeless...I wonder if they will ever find a RA med that will work for me??  So far I have failed Arava ( mouth and tongue ulcers), Humira ( six months with no change in symptoms), Enbrel (extremely high blood pressure), Orencia ( tremors, headache, fatigue) and now Actemra.

Enough excitement for the week.  My RA Doctor is aware and I have an appointment to see my Primary Care Dr in Grand Forks, ND next week.

Far Side

 

Double Flowering Plum

 The Double Flowering Plum is in bloom, the blooms are sparse most likely from last years drought.

Perhaps this shrub needs a total cut back or rejuvenation. 

It rained on the blooms. 

I am spending most of my time on the couch; shivering, waves of nausea, headache, tremors, in pain and very dizzy, Far Guy keeps one eye on me.   Withdrawal from some medications (Cymbalta) is not easy. I did a six week taper...and still have horrid symptoms.  Poor Far Guy had to take over cooking   cook if he wanted to eat. 

One day on the new Blood Pressure medication was all I could take...I will wait a few more days to try that again. 

Far Side

Headed to the "Home"

Far Guy takes medication daily for the unbearable pain of Trigeminal Neuralgia. He is on a new form of Tegretol and the added med Baclofen. He must take his meds four times a day. The Doctor suggested 10-2-6 and 10. Well, fine we can do this, we are after all two fairly mature normal adults...RIGHT?..well maybe that is stretch of my imagination.

I got organized with the "new plan"..the container is filled at the end of the day. I did it a few nights, now Far Guy is in charge of doing it. On the weekend he "forgot" his meds at home, so his doses were late. Sunday was a pain filled day for him, at one point I was sure that we were going to end up in the ER. But he made it through the night and actually felt pretty good yesterday morning. With our new system he is supposed to tell me when he takes his meds. So he tells me "I took my pills", but then he forgets to take them. HE LIES..well maybe he just stretches the truth..he thought about taking them..but the container does not lie, if the pills are still there it is quite obvious to me that there is a problem. I have now enforced a Witnessed Medication Program ...he must bring the pill to me wherever I am at..put them on his tongue and I must see him swallow them.

I started this new WMP last night. Last evening around six o'clock I was having a really fun time catching up with a friend on the computer. Far Guy interrupted me and said "I need to tell you something, but you have to promise not to get mad and yell, or bitch at me all night." I agreed very reluctantly. He said "I have not taken any of my meds today" I replied .."But you told me you took them??" He quickly stated "You promised..not to YELL." I did a slow burn and logged out of the chat room. THEN I began to sing to him..singing is not yelling .. "La La..you forgot your meds again..I can't believe it La La..I am so upset.. La La I don't know what I am going to do with you La La LALAAA." About that time my brother knocked on the door and interrupted my singing which may have escalated to uncontrollable bitching. Far Guy was saved from my wrath and said to my brother "Thank God you are here, she will shut up now." I just held my head in my hands, we are destined for the "Home" if we don't get our poop in a pile pretty soon.

Truthfully, I was tempted to hit him with the invisible hatchet that I carry to protect him from insensitive people.

Today is a new day, the WMP is working, I set the oven timer for four hours..it will ding at the appropriate time for the next Witnessed Medication Ingestion. If either of us wore a watch perhaps we could set an alarm reminder, but we are retired and time is usually not an issue. When we get to the "home" someone else will be in charge and they will have a watch:)