Here I Am Again...

I miss blogging.  I keep saying that, and I keep stopping because I am boring.  I started going to a counselor and she suggested journaling.  This is my way of journaling... blogging.  I will really try again, but you will have to hear the good, the bad, the chronic and the "old adventures" we have been on.  Normally we are a boring, but a comfortable for us, couple.  I spend my days dog paddling and he spends his days caring for me and drowning from it.  

Today I spent an entire day going to the Dr.  3 Drs, I went to one, went to the next, I waited 1.25 hours in his office room for him, gave up, left, went to another and came back to the one to wait another 1.5 hours.  He is worth the wait, but I am sick and didn't feel like sitting for 5 minutes let alone hours - and then, because it was an all day affair and Steve had other things needing done, I had to drive home.

My truck is driving funny, so I took most of the backroads from Tulsa, crossed the river, and made it just in the nick of time to the pharmacy to get my pain patch I had been out of for 4 days.  1st Dr apologized profusely for not getting it renewed in time.  I hurt.  I need that pain patch.  When they finally got me on a medication to get the lupus under control, and Dr decided to add the pain patch - it was a game changer.  The two together have made my life so much easier!  Praise God!  

Dr #2 & #4 decided that instead of getting IgIV every 28 days he wants me to get it every 21 days.  It takes 7-ish hours to infuse, I have to pre-medicate with lots of antihistamines prior to infusion so I don't have a reaction for it, so I am basically comatose.  If we try to go faster, I have a terrible infusion migraine for a week.  Doing it slower I have "infusion flu" for about 4 days.  If I try to do anything for those 4 days, I get the migraine. 

Dr says he needs to do my infusions every 3 weeks to get my IgG level up to 1100 if possible.  He is increasing to every 21 days to see if it helps me back to back and chronic infections.  His thoughts are if it does help the infections, it is an IgG problem, if not, it is an ICL problem.  One can be fixed with the increase, the other cannot be helped.   We will do this for 6 months.

So, now I get to do this every 3 weeks, lose the next week to "infusion flu" or "infusion migraine" have two good weeks then start it again.  Oh the joys... no, I am not looking forward to it - and I hate that Steve feels like he must go with me because it not only wastes my day but it wastes his as well.  Yes, I know it isn't truly wasting... it does make me feel better.  But if you know me, sitting, laying, sleeping, resting... does not come easy to me.

I still suffer from fatigue.  Severe fatigue.  Some days are better than others, but gosh, I feel like I have run a marathon if I leave the house.  At home, I can sit and rest as needed.  Out... not so much.  Even riding and not going in any place is exhausting.  I will never get past that, but some days are better than others.  When I make sure to walk every day it does help.  With our winter this year, that has been difficult.  We do have a road out front I can walk on, but I prefer to walk around the fence line of our pasture.  Isn't that strange?  I am more private than I ever imagined... food for thought.

Chronic disease is tough.  I don't care what you have.  It sucks.  So many people, like me, have multiple diseases and coping is a real struggle.  That is why I went to a counselor - to help me figure out how to quit drawing into myself when I am struggling so hard.  My sweet hubby probably asks me 50 times a day if I am ok. I am definitely not the person I used to be; energetic, and a go getter.  Now I seem to withdraw into myself to cope... constantly trying to figure out how to fix how I feel today.  

Anyhoo, here I am, today you got the bad.  There will be good.  Today, I just needed to journal my thoughts and frustrations.  There are a lot.  

Tomorrow is another day.  I plan to sew.

Good news!  Rod, Steve's step-dad turned 90 today!  He is an amazing man and listening to his stories is just wonderful.  In 90 years he has seen and done a lot.  Love him forever.  He had just a few cards to open.  We did a card party thanks to Covid.  

Happy Birthday, Rod.  I hope it was wonderful!  

Here is a picture of Steve's mom and Rod that we took last week. 
I sure love them both.  They are a fun couple.  :-)