Wow… I’m sorry… I’ve been bad keeping up with this lately… things got so chaotic, summer was busy, then Chicago.. then the holidays. Then not feeling well after the holidays… ahhh!
So to begin with… each venture to Chicago gets and more enjoyable each time. I physically seem to enjoy myself a little bit more each time! This trip down there my highlights was visiting at Prentice, the Science & Industry Museum (Awesome!) & being able to walk under Lake Shore Dr. to make it to the Lake:
On a side note, I always had doubts about staying at the Worchester House because of things I had heard. Well this time I didn’t have a choice. There was a convention (when isn’t there? Lol) but this one left no rooms anywhere…. So I had to. Well…. Idk why I waited so long.. the only thing that I was afraid of that lived up to be unbearable was the beds It was painful and hard. So next time we will make sure to bring air mattresses or foam toppers (yes we will stay there again. Lol) The thing that made me the happiest was there was WiFi!!!! Heard so many people say they didn’t have it…. So it must’ve been added more recently? Either way…. Happy happy! So otherwise it’s like an apartment building…. You have keys to get in the front door (secure! Yay!) and a separate one for your room. Otherwise the rest is what you would expect… kitchen, bathroom, closet and sleeping area. Nice tv. Just remember to bring your own kitchen pots and/or pans if you plan on cooking… and anything else kitchen wise you would need. Took some pictures:
Now… for the big appointment after mri and all the fun bloodwork. 😊 Well 1st of all… we had just left lake Michigan and were going to find something to munch on cause it was lunchtime, and then my phone rang. It was Dr. Burt’s office asking if I could come in early… way early… like right then. So I said yes we will be right there. Well…. We booked it. Like power walking and any short cut we could take. I couldn’t believe how fast we were moving… I was wiped. But made it there. Went in for appt. with dr. burt 1st. Had a new nurse… somehow she managed to get the wrong patient and was getting my weight wrong… and then asked if I was 5’ something, I was like I wish but no… I’m like 5’3 or 5’4. So after all that and vitals and height and weight and all that…. She realized she had the wrong person pulled up. She pleaded that I not tell dr. burt. Lol… oh my. So anyways… he finally made it in…. gave me my mri results:
Yay!!!! No enhancement or progression on brain or spine!! *happy happy grateful dance* So happy. He checked me over… answered questions and went on his way. I notice people get different answers on revaccinations. He left it up to me and had Kate talk to me more. She explained that yes it’s up to me. Others have gotten revaccinated. There is that chance that it could reactivate MS though…. Just because a vaccine stimulates your immune system. So idk. I went home… found out I’m no longer immune to Measles or Rubella (I think that was the only 2) and I decided for now I’m not going to get revaccinated. I’m too scared too. Even afraid to get the flu shot even though it’s not a live vaccine…. I’m just worried. After that I had to go get EDSS testing done and then we were on our way back home. 😊 I was a happy camper for sure! ❤
Since we went to Chicago for the 1 year appointment…. I’ve had ups and downs. Holidays were stressful on me… but made it through. This month (January) I’ve had some lingering cold… I think I am better and then it’s still there. I have been in so much pain… and my nystagmus has been horrible. I’m hoping it’s just from being sick. I’m still fighting with anxiety pretty bad unfortunately. Very lonely. It’s hard when you can’t drive far and absolutely no one ever stops by. It’s been hard but maybe someday I’ll find a friend who has the time to come see me… (wow I sound pathetic don’t i?) There has also been a few deaths this month which is always on my mind. Most recently Uncle Mike on my stepdad’s side of family. My heart aches… not just for me but for his whole family. They’ve been through a lot. But he is no longer suffering… and is with his dad… wife… and others now I believe. I just wish everyone would get along and make time for loved ones and be there for each other while they can.
Ok so I got off subject…. So what this blog was intended to be about is yes…. At 1 year out I was still in remission!! No MS treatment meds since March/2o15. It is truly an absolute miracle. I still have a lot of really bad days…. But to know that I’m not getting worse is all that matters to me! My good days I can enjoy with little fear that something the next day will come up to disable me more. ❤ ❤
Everyone take care.
~ Carina ❤