or so said my horror scope today. I kinda laughed cuz Reality has been here for a while. Reality is I feel like I have been hit by a bus. Reality is my legs don’t work like my brain or my heart is telling them to go and they are saying “Nahhhh.. I wanna hang out here for a bit, You reallllly don’t expect me to hold you up and move across that floor. Im gonna just chill here for a bit.” Reality has been here for a while. I don’t really believe in those horroscope things. I always thought they were comical and just entertaining to read and I still believe that. They are so generic and you can fit them to your life in some aspect always. which is very true. you can. Cuz boy has reality set in. I could sooo apply that to my life.
We made the trip to Birmingham really well. It was hard don’t get me wrong. sore is not the word for what I am today. We found the hotel with pretty much ease. Thank you lord for Mapquest.
The hotel was gorgeous. IT was The historic Redmont hotel that had the winding stair case, marbel floors, grand piano, consierge type of hotel. Not the “we will leave the light on fer ya” kind of place at all. The room was small but in a spacious kind of way. It ws laid out nicely. Close to the Hospital. The consierge’s name was Don. HE ROCKED. He was very personable and friendly. HE even jetted us to the resteraunt, Jim and Nicks, when the one kinda close by was not really what I wanted to eat. We went to. It was a kinda hole in the wall barbeque place that if your in Jackson and you remember the old Iron Horse Grill. It was kinda like that (my family will know what Im talking about) kinda wood beam showing factory raw looking place with wood floors. They had these muffin roll things they serve as an appetiser that OMG I almost filled up on before my food even arrived. The consierge came back and got us and shuttled us back to the hotel (how is that for service!) was a very nice place.
The hospital was very impressive it was like a mall. IT was so huge. We were at UAB, Kirkland Center. It had a library and esculators and was just unbelivable. was massive on the inside as well as out. My Dr was from Pakistan I believe, you could tell he was VERY smart and knew his stuff (and not from Alabama). He was very personable asked me a kabillion questions and poked and prodded, bended and flexed me in every way possible. Made me attempt to walk on tip toes and heels. I did the drunk driver test and failed miserably. I guess all that says is I always look like a drunk whether I have been drinkin or not.
He brought me back to a little room that they look at all the tests and stuff in, was kinda cool and showed me my brain on the computer (was awesome, YES I HAVE A BRAIN!!! I SAW IT!! SO THERE BIG BROTHER! I SAW IT! NEENER NEENER!) WE have proof whhewhew I have a brain. It was kinda freaky too though seeing all the lesions, But the important thing is we saw the lesions. LOTS of them. BUT the main one that they are concerned over and that was causing my issues.. was on my brain stem going down to my spinal cord. It was as big as the part where the fluid is wide, and as big round. He said that is the one that is causing my most trouble and the one they need to watch out for. He explained the number of lesions although not good, isn’t as concerning as location. The ones in the frontal lobes are causing all my cognitive issues, the one on my spinal stem is the one causing my physical walking and movement issues. He recommended I get another mri Since it had been a few months to see if it had gotten any bigger. He said that is the one that is causing my legs to be wonky and my arms to feel freaky and all the issues im having is from that one right there. The other ones yea were bothersome and all but not causing the havoc that one on the spinal stem was causing. Also causing the hugs that Im having that hurt so bad I can’t even tell you what it feels compared to besides child birth.
His recommendation.. go on either Rebif or the Copaxone. The difference? Glad you asked, I said same thing. Rebif you take every other day, has lots of side effects (feel like you have the flu which well I pretty much feel like right now anyway..) Copaxone, you take every day but less likely to have side effects. Which one will I choose? Again Glad you asked. I am thinking of going with Copaxone with the less side effects. WHY? because this is me we are talking about and if there is a side effect to be had…. NANCY JONES WILL HAVE IT! I will be the text book case they want to take a photo of. That my friends has happened with lots of medications. (can we all remember lyrica for a second?? 1 in 90 cases to have the reaction I DID.. thank you) I think I will go with more often less side effects kinda dose. I have a 5 year old I have to keep up with, I dont have time to lay in the bed. I have memorys to make and pages to scrap. No time to feel like crap. so I say go with whatever will keep me walking but not side effecting.. so to speak. Now another lady I respect highly told me to be careful, After she took it for 2 weeks she broke out in hives from it. so JUST BECAUSE the first couple weeks are event free, it could still happen keep benadryl with me at all times. SO, I will heed her advice. We will go back to my regular dr here in Mobile and give him the report from Dr. Bashir. He will set me up with a home health nurse to teach me how to auto inject the shots. should be easy huh? deep breath.
Its a sacrifice. Sacrifice this to keep doing what I want to do. which is walking and playing with Bella bug being a wife to John and scrapping. SO thanks to the dr’s for figuring out this difficult puzzle (finally) and helping us embark hopefully on a longer remission time. I got so spoiled, even got to work for a while and was a normal person. I can pin point exactly where it went downhill and I went out of remission before my life went to squat. Lots of people didnt understand and or see what was happening. Heck I didnt see it either. I should have recognized more what it was. But, I can say I miss that so much.I miss being around people and having fun. You would have never known I had anything wrong then except when I had to go on that study crapp. which was a nightmare. Stayed sick. OH well hind sight is 20/20It Is what it is..
I hate worse right now these hugs where my rib cage feels like it is hugging and squeezing my stomach to the point I upchuch. we take wal mart bags every where we go to be sure I dont spew all over the car or something. That was an important part of our trip because even with the air conditioner going full blast… I still got hot. OK Im tired of talkin about all that crapp LETS talk about the fun stuff.
I got to go to the two scrap book stores there. At, Scrapbook Mania, I saw a big poster of my friend Cheryl Mezetti I was crakin’ up cuz she is NOT that type of person and probably would be red as a beet if she saw her face that big on the front of a store. I should have taken a photo of it. I was so crackin up. I know they thought I was nutso cuz I was laughin walkin in the store. NOTHING about their store, It was awesome, just laughing that I KNOW Cheryl would have died to see that. That was scrapbook mania. India the owner there was so sweet. Her store was adorable and had alot of the product I had never seen in person. She had it set up very cute! Cheryl is coming in August to do a class there and I SOOOO wanna go. IM tryin to convince JOhn I NEED to do this. (even thought the trip is so long and hard but It would be worth it) CHeryl is a good friend and she doesnt make it down here taht often. That will probly be the closest she will come. NOT TO MENTION she is OMG talented and I could learn soooooo much from her. Anyway got to do some convincing on that. but first I HAVE TO FEEL BETTER and get where I can go! I got some adorable papers I had not seen in person that I had wanted there. yes when you see them in person it just makes you swwooon.
On the way home, we stopped by Scrapbook etc. It was in an outdoor strip type mall like we have here at spanish fort. as matter of fact looked just like it. Modeled the same way. IT was a very Cutesy upscale store. JAM PACKED with product. I got to meet my blogging bud ADRIENE there. She is so adorably cute and so are her kids. They are so well behaved not running around mama this and mama that like most kids. THey sat quietly while we visited a bit. SO well behaved. Did I mention how cute she is? I felt like a beached whaled beside her (love these meds) She took a picture I will share after she emails it to me.
This store had a ton of stuff in it. You could hardly move they had so much awesome stuff. BOth of the stores had that HUGE accucut machine you can run 12 x 12 papers through and cut out your own stuff. I was so impressed and thinks I needs one of those rofl (way tooo expensive I tell ya)
Alot of the products had been picked over as well(both stores) but that is expected just like mania, since CHA is coming up. It has been so long since I had gotten out and been to a scrapbook store. I was like a kid in a candy store.
They did have a couple things that were different that I didnt have. So John let me get a few things from there too. SOme of those awesome prima flowers I love the painterly petals. THEY are sooo cute. anyway.. It was fun.
We stopped at the little learning store next to them and got Bella a puppy webkins. SHe will lvoe that. she told us to bring her something from Beringhams (rofl) so that is what we got her from (Beringhams)she has been wanting a puppy so there ya go
We drove home and I was so exhausted I went straight to bed. IM still just give out today feel like I have been hit by a semi. Muscles hurt I didnt know I had. but we are home. IN MY BED! so that is good. OK there ya go. THat was our trip and all the info.
I think IM going to lay back down a bit Im still just exhausted, and sore. I hope everyone has a very good day and thank you for your continued prayers.
hope the new meds work really well for you with NO side effects.
yay i hope the meds work out great for you my love and i am soooo jealous you got to meet adrienne….
good luck with everything!
I pray that you will not get any adverse side effects from the new medication. Hugs to you Nancy
Nancy, am keeping you in my prayers, that the med will work, and that there will be NO side effects!! So glad you got to the two stores. Thats always so much fun! And I am hoping you can get back there to see your friend!!!
Its good to hear from you Nancy and I so hope and pray that the meds work well with no or minimual side effects…I’m glad you got to visit some scrap stores and had a bit of fun anyway…I’m thinking of you and praying for you((((HUGS))))) Patti
Nancy — you inspire me!! You are such a strong woman — your dd and dh should be proud. I hope this visit and new meds will be a positive turning point for you.
So happy you got the answers you needed so you can move forward with treatment. Don’t worry about the shots-it’s easy. Just wish I lived around the block cuz I’s stop over and give em to ya for free-right in the butt!LOL!!
Hey, sis. My prayers, as always, are with you! I hope the Copaxone works and the side effects are not even an issue! I love you and want you around for a very long time. I depend on your comedy emails to perk me up!!! (((HUGS-the painless kind))
Nancy I hope this is what you need girl, I am ready for you and I to make some road trips!!!! I want to go see Greta and Elizabeth and shoot we can make a big ole loop and meet all our peeps!!!! Get well!!!Love Ya!!!!
Nancy, I am saying prayers for you that this med works and you have no side effects!! You are such an inspiration to me! Shoot if I lived close I would come give you your shots…I give DH insulin shots 3 times a day. I am so glad you got to go have some fun on your trip to the Dr also, now rest up and get over that soreness!! (((gentle hugs)))
i hope the meds work for ya chickie – and wow !!! on visiting the stores. i love fondling papers and stuffs. hugs and prayers chickie. miss you!!!
I hope the meds work for you…You know I am still praying for you. I really like Jim and Nicks..oh and glad you got to go to Scrap Etc…ok I remember last time I went you said I didn’t take you..so why didn’t you stop by and pick me up..j/k…glad you made the trip ok.
I’m so glad you had a good trip. Birmingham is known for its great medical centers, so I’m glad you were able to come up here.I am SO sorry I didn’t get to meet up with you and Adrienne. Did she tell you about me having a dentist appointment at the same time? yuck! (Next time you head this way we can try again!)