Hello everyone!  I hope this post sees you well and everyone had safe and happy holidays!  Honestly I haven’t posted anything since this past summer, since I have begin Skyrizi.  Reason being, nothing much has happened, except life of course.  I have had a few ups and downs and in betweens since last talking to ya’ll, so here we go!

When I was having all the problems this past summer, I was in between the medicines Rinvoq/Stelara and Skyrizi.  There was probably a month and a half between the meds that I was really in a tailspin!  Finally, I was approved by my insurance for my next medicine, Skyrizi.  I had to do 3 start-up infusions, then every 8 weeks with a pre-filled pen I could do at home.  Everything performed without a hitch and I got my energy back and life has been great.  I began to clean out/organize things around the house, enjoy going out with friends/family and doing everything to the fullest!  In the back of my mind though, I know through experience that all this can be stripped away quickly at any minute and I have been cautious and more aware of the things I eat/drink, especially here lately.  I am wanting to plan a vacation this year so I need to ensure I am living a healthier life so I am not sick during the vacation.  It has been so hard to plan anything long-term because I don’t know what I’m going to feel like that far out, so say a little prayer for me please!

I hoped that by taking Skyrizi, it would heal my fistula as well.  So far, I still have my fistula and I did, for a time, have ongoing (one after another) urinary track infections until my Infectious Doctor had me take Cefdinir (antibiotic).  I had taken this in the past and it worked miracles for me!  I went from draining my bag 12-14 times a day to around 4-5 times a day.  I have been on it since I have been taking the Skyrizi, so I’m hoping when I get off the antibiotics that it wasn’t the Cefdinir that made me feel better but the Skyrizi.  We’ll soon find out.

When my home health nurse drew my blood back in October, I had the best blood count I have had in a very long time!  My hemaglobin (blood) count was normal when it had been low for a long time, my magnesium levels were normal finally and my liver enzymes were in the normal range as well.  I was so amazed at all these counts being normal because I haven’t seen it that good in so long!

Around the beginning of October, my home health nurse told me that I would be getting a letter in the mail telling me that my pharmacy/home health provider will be closing at the beginning of this year.  That means that I would be losing my nurse/friend that I have had since 2020 and I couldn’t believe what I was hearing.  She had been through a lot of things with me, including the death of my dog and my many hospital visits.  I also valued the information she would give me about what’s going on in the medical world and about my health.  She too was worried about her job and what she would be doing with the changes going on.  We both were bummed but thought we would have until the end of the year as her being my nurse.  She came every Monday to my house to change my dressing so the first Monday in November she came, changed my dressing and left.  The next day I received a call from the pharmacy telling me they found me another pharmacy and a new home health facility and they will take over starting next Monday!  I called my current nurse to tell her what was going on and to tell her my goodbyes and I never seen her again.  That was hard.

So I have another pharmacy and I had another home health nurse for about 3 weeks until my insurance told them that they wouldn’t pay for the nurse to come to my home, I should be going somewhere to get my dressing changed.  All of this has just snowballed me and it is so much different from what I was used to for 4 years.  I know sometimes change is good but I still don’t like it.  I now go to a local hospital’s infusion center to get my dressing changed and that’s something right there…The first time I had my dressing changed there, the nurse was very high-strung and got stressed with something else going on and took it out on changing my dressing.  The second time it was changed, another nurse pulled my PICC line out a bit to arrange it in a different way.  OUCH!!  I decided that I was going to ask my GI doctor at my next appointment if I can get my PICC line out.  I’m so done with it.

Oh yeah, by the way, the all too familiar pain that was previously in my right side, is trying to come back.  Every now and then the pain comes back and will last for about 2-3 days and go away…all I can do is to take it day by day-and pray.

Chow for now,

Kelly