My New DreaMS

Even though we were discharged from the hospital, things for Danny have been far from smooth sailing for him.  Thankfully we haven't seen much of these episodes he was having but he has been having some significant discomfort. He was seen by Dr K last week to see if we can get on top of what was going on, but all the tests, labs, and X-rays didn't show anything other then a bunch of air in his intestines. Darn!!  A few days later he started to have some excessive BM and more discomfort.  I ran a sample over to the clinic and the next day I got a call that he tested positive for another C Diff infection. Shit - Literally!  Danny started on an antibiotic that will last for 10 days in hopes to knock the infection out. I've seen his eyes more and even a few smiles :). So I'm hoping to continue to see improvement with him.
The school year is coming to close for Ms Av in 7th grade. I can't believe she'll be in 8th grade next year. WOW!  I'm So proud of her and dedication to education. Another straight A year for her so Bring on 8th grade!!  For Memorial Day she marched in the parade for the first time in Band. They sounded really good and for the time frame they had to practice and memorize I'm amazed at how well they did.

The beginning of the Memorial Weekend Av went to the Dells at the Wilderness with her cousin. She had a BLAST!!  Of course it was no fun coming home, but I think she enjoyed some down time. Summer is right around the corner so let the camps for Av begin. Her first camp is going to be a week long confirmation camp which is about 1 hour north of home so not too far but she's not too impressed as they go 3 days after school gets out. The end of June she has diving Zones over in Iowa for the weekend and then she'll stay they through the week and do a diving camp there too. Should be fun, she really misses the Hawkeye Dive Camp there. It was her first diving camp ever and she still says it's her favorite. As of now Av would really like to go to Iowa and be a Hawkeye....time will tell to see where she ends up going to college.  It'll be neat to see what she's going to be when she grows up.  Skies the limit!! Av's been seeing a new physical therapist about her knees.  This one is doing a technique called dry needling and then add electrical current to the needles while they are still in.  She says it's helping, slow and steady I guess.

Dan has the new building construction progress moving along. It's really cool to see it take shape.    I can't wait to see what will occupy the spots.

 At least I know I'll be getting some flowers - teehee. Between installing equipment in a couple laundries for others, a big sanitary addition in the town, some sanitary lift station issues, the regular 911 calls for the fire dept and first responder, maintain our 2 laundries, and our running around the country with Av this summer - Dan is always on the move and busy. I surprised Dan with an early Fathers Day/40th bday present and got him tickets to go to Bristol in August for the night races. It's been on his bucket list for awhile so Dan and I will be camping in the RV in the Bristol Campground and taking in the NASCAR experience with seats on the Front Stretch.  Should be a great time ~ now to work on care for Danny!!

I went and got my roses tattoo on my back redone last week.  It's amazing and beautiful.  Another one of Jake at Wicked Ink's creations.  Here is the before and after photo....can you believe he designed this all free hand and on the spot.  It's looks so different, I'm in awe as to what he can do. "Not all illness is visible ~ Not all pain is obvious"

I've entered in a whole new experience with my MS. Last Thursday I had a permacath central line put in my chest so I can receive plasmapheresis which is where they are taking my blood out, spinning out my plasma, then replacing it with albumin, and giving it back to me. It's thought that the protein that is attacking my system is located in my plasma so if it's taken out and hopefully reset I will have less MS issues. Right after the line was placed they put me in a room and started the new treatment right away.

The treatment goes pretty well, other then I freeze as they are taking everything out at body temp around 98 and then it comes back to me at room temp about 71. So I sit and just shiver!!  I have this everyday for the first 5 days (except I was able to not go over the holiday weekend) and then once a week after that.
The line has been complete hell!!  I had alil sedation and I could still feel the discomfort of the line being threaded in my chest, then when done they gave me no pain meds and I'm telling you, wow is it uncomfortable. It's day 5 for me and I finally can lift my arm on the left side, turn my head side to side, but I still have a significant pinch in my chest when I take deep breathes in.  It seems I either have a skin reaction to the stuff they put over the line to keep it clean and sterile OR I have an infection. Today during my treatment they did a swab/culture to see if it's infected and then as a precaution they gave me an antibiotic.  Of course I would get red mans syndrome from the antibiotics which was pretty miserable.  I turned red, hot, and itchy all over...nothing alil benadryl and tylenol couldn't help though.  Looks pretty bad doesn't it.  UGH!  I'm so done with MS and all the grief it's giving me ~ DONE!!

I have a neurologist appt tomorrow so we'll see what she has to say...if this treatment is going to be a  new normal for me I am going to push for an alternative way other then this line in my chest.  It sucks!!
Stay tuned ~ I hope you all had a safe Memorial Day!!