I am home!!!!!!!!!!!!!!!!!!!!!!!
Again, I have to kind of apologize for not being the greatest at keeping the blog up to date. So much has been going on, and I have been so very, very sick that it just hasn't been possible to blog.
The pain med switch has ended up being the best decision ever made. I am so thankful that the Lord basically backed us into a corner and left us with no other options. The first day was a little rough, as the med has to build up in your system. Once it got to a good level, though, I felt MUCH BETTER! My blood pressure and heart rate went back to non-dangerous levels. I SLPET through the night, I napped during the day, I started to feel like a human being again instead of a crazed-with-pain-sobbing-sleep-deprived-insane-feral Hannah. Not to be dramatic or anything.
The difference was extremely marked, and noted by every single person involved with my care.
And we were all very thankful.
After a few days of weaning off the other meds and watching me to make sure I remained stable (and I did!), the doctors felt comfortable discharging me to follow up with Rheumatology and Pain Management.
The Pain Management NP came in on Wednesday and we were both all smiles. I was so relieved to be in less pain. He was so relieved that I was in less pain. He sighed and smiled and confided, "Oh, I am SO glad that this plan worked. If this didn't work, we didn't have any idea what else to do to help you. I had consulted with my doctor and others, and this was a stab in the dark. We were very concerned that we'd never be able to get your pain under control."
This was NOT very reassuring to hear, haha! It just makes me thank God all the more that He DID allow it to work. I thanked the Pain NP profusely for his help. Honestly, this is the best pain control I've had in months. There's a baseline of pain relief in my system that doesn't make me feel drugged or loopy - just less pain! If I need to, I can still take a pain pill on top of the med, but the pain is not like it was.
I still have a high WBC, my labs reflect that I'm anemic and malnourished, as well as indicating some possible new endocrine and autoimmune issues, I'm still running daily fevers and night sweats despite the high-dose steroids... The Colorectal Surgeons weren't up to the task of sorting all these issues out - I will need to get a non-surgeon to take a look at all that. ;) I am absolutely confident that just being at home will allow me to heal up and get much healthier.
Where I go from here.... basically, I have some kind of systemic autoimmune inflammatory process going on... Rheumatology is the specialty that is supposed to manage this in the long-term. I made an appointment with a new Rheumatology office. Making an appointment with these people is very challenging. I began calling on Monday, and continued to call daily until I got a live person on Wednesday. I explained that I'd been in the hospital for 5.5 weeks and my discharge was contingent on securing an appointment with a Rheumatologist in the next week. The lady dryly informed me that the earliest available appointment was in late August, and she did not have the time to schedule me today. I could expect a call back from her in 1-2 weeks to schedule an appointment. Then she hung up.
I was, um, surprised, to say the least! And a bit miffed, but I just kept trusting God... and later that day, someone from the office called me and set me up with an appointment to see the Nurse Practitioner next Tuesday! What a miracle! The process of finding a Rheumatologist who will "work" with my personality, set of health issues, lifestyle, etc, can be a major challenge. I am praying that this visit will be a good one that will yield some answers and a good plan.
I felt like a celebrity as I was wheeled off the floor and down to the car... everyone waving and smiling at me... I don't know that I've EVER been so happy and thankful and excited to be going home!
Since arriving home, I've set up several follow up appointments with my specialists, cleared up some steroid questions with the Endo Doc, and organized my meds. I now have a CRAZY med schedule. So many different meds. But it is now much better organized than it was at the hospital, where I literally received a med EVERY SINGLE hour throughout the day and night. Now it's much, much better, but it is still like 15 different meds several times a day. Aaah! I will be excited to see if I can pare down on some of these meds very soon.
Please keep praying! The hospital leg of the journey is ended for now... but the journey continues... I now need to find doctors who will work with me, find treatment(s) that will work to get and keep my body where it needs to be, wisdom and patience for dealing with the MOUNTAIN of bills and paperwork, and rest and healing and nutrition at home!
I am SO incredibly blessed and thankful for each one of you who follow my journey... who pray... who root for me... please know that you make a HUGE difference in my life!
Also, please, please pray for my IBD buddy Laura. She is going through unimaginably difficult times right now. Please pray for strength and endurance and relief and encouragement as she faces incredible pain, disappointment, and awaits a big operation.