1 year Update (Very Late) & Worchester House Pics

               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:

Museum ^^^^
Lake (Below)

                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 ❤ 

The month leading up to my 1st stemmie birthday… (Posting a couple months late)

Well…. it’s actually October… but decided I should update.  I will be doing my 1 year Chicago follow up sometime very soon in a separate post….. because it definitely deserves it’s own post. 😉
The month prior to my 1 year follow up…. well… was miserable.  A lot going on with people in my life…. and…. I got sick.  Come to find out the 1st thing turned out to be a UTI… which I had a feeling… but doctors just didn’t want to listen… 😦  Once I was finally able to get in meds I felt so much better.  And then I got hit with some kind of stomach bug.  And during that month of both of those sicknesses my MS symptoms were flaring up so bad.  I thought for sure… between that and stress I was doomed and my MS was active again.  So that on top of anxiety & depression issues sent me into a huge downward spiral. But more on that in my next post also 🙂
My main thing with this post…. as people around me keep getting sick as the seasons change… it’s reminding me… that although my immune system is definitely stronger then it was at this point last year…… to be careful.  Because catching anything can take a much bigger toll on me then it has in the past.  😦  So anyone who is just starting recovery or is just starting the process or if you’re a year out…. keep your hands washed and away from your face…. ❤ ❤
114
Before I end this post for now…. a couple things to brag about quick from during that time frame when I was doing ok:

109
My 1st Woodburning with color added that I made for my son. ❤
110
My son on his 1st day of 7th grade!!!! I am SO SO proud of how wonderful he is doing!

It sure does take me awhile to woodburn because of my eyes…. but I just take my time…. and it’s so worth it and stress relieving.  I enjoy it so much.  We also went to see “Heaven is for Real Live” in August here in our city.  It was long…. it was during the not feeling good phase… but it was so so worth it!  To hear their story… to worship and sing with that stadium full of people was absolutely 1 of the most amazing things I’ve ever experienced!!  If you have not read the book “Heaven is for Real” I strongly suggest it.  I fell in love with the book… then the movie…. and so to have the amazing blessing to see them live and be around so many people just praising the Lord was amazing.  I am so thankful that I was able to have that opportunity… and thankful for HSCT… because although I had to use my cane and the boys to get around that evening and was miserable…. I think a year before hand it would’ve been much worse, I will always be thankful… for everything.  And try to remember this during bouts of depression or anxiety attacks…
Well I will end this… I just wanted to remind everyone to KEEP YOUR HANDS WASHED!!!!  Since most sicknesses are spread from touch……… 😉  I will update soon on how my 1 year appointment went in September!!!!! Xoxo

~Carina

Day +327… What a summer!!

Wow… I can’t believe it’s been almost 11 months since I got my stemmies back!!  I can’t believe it… I could never see this far down the road… and now I am almost there…. just can’t believe it. Bear with me in this blog as I have so much to say!!!!

First of all… since my last post… I am still fighting the depression/anxiety battle.  The dr. I need to see is not available until the end of September… so in the meantime trying everything I know of to keep myself as calm as I can to get through this.  I almost want to laugh at myself… why do I feel like this since on my good days life is so amazing?  Here are some of the things I got to do this summer…. which… summer… is a time I do not leave my home… especially the last couple of years.  The fact that I was able to go to these places and enjoy myself somewhat… blows me away…. (we won’t mention what I feel like afterwards for days… lol):

Amazingly fun times!! I got to go swimming with Karen and the kids… hard time getting back to car but the water… felt amazing!!! We also got to go to Edgerton Tobacco Heritage Days.  Got to watch everyone play Knockerball!  Looked like fun but I know my limits and I know how hot it was…. and if I got knocked down which we all know would happen… I wouldn’t be getting back up. Lol.  We also went to a cute little park there after getting some bacon wrapped brats from my cousin. Yummy!  Then the fair… it was almost 9o degrees… but it’s been quite a few years since I was able to go… so we tried it.  Within mins I said oh no I can’t do this.  Nate got me an icee and got me in the shade… and I lasted 3 hours!  Max had fun too and went on some rides with some friends.  I couldn’t do much but I was able to go and play my coin game and just enjoy being out and about… it was enough for me and I was so happy.  By the way… that was last Thursday… it is now Tuesday… and I am still recovering from it.  Took so much out of me but so worth it.

So that’s been my summer and things I’ve done that I haven’t done in years… and never would’ve attempted until now.  To wake up… relax… and then be able to tackle these wonderful things have been amazing.  And has helped with the depression a little… until I’m down for days because of it. Lol.  Otherwise have just been enjoying time with Max while he has been home… and have had the nieces around a lot.  I love them all to pieces:

ALSO….. I saw my eye dr. and neuro in July.  Neuro 1st….. she is impressed and happy that I am not getting any worse.  She wanted to check my vit. D levels to just make sure all is good and either way re-start vit d3.  Well so glad she checked… my Vit. D levels were very low.  So on 5,ooo IU’s a day now and hopefully when we re-check i’ll be good.  Since it is thought that Vit. D deficiency can possibly play a roll in MS is why she wanted me to have enough.  An extra cushion against MS as she said.  Lol.  But either way was good it was checked.  And THEN… my eye dr.  So get this…. every single year since I have needed glasses…. my eyes have got worse every year.  This year…. THEY GOT BETTER!!!!!  We were both like WHAT??  So new prescription as usual… but this time it is a more weak prescription instead of needing a stronger one!!!  So absolutely thrilled.  She is still going to do Optic Nerve scans every year just because of the 2 optic neuritis attacks I had… Idk if it’s because she may have doubts but ah well. Idc… I’m a happy duckling!!!

                                            ^^^^^^^^
Been coloring a lot lately too. Lol. I hope everyone is having a great summer. Chicago contacted me last week to set up my 1 year. Sounds like Sept. 14th.  They will get a hold of me when they have my final schedule put together!!!  I can NOT wait for my MRI!!!  A little over a month to wait….. ahhh!!!!  

 ~Carina 

Not HSCT Related… but…

So this blog post is not really HSCT related… but it sure is affecting recovery.  Depression… anxiety. Throughout my life I have battled depression for as long as I can remember.  I have been through so much… but I don’t think I can blame it on anything.  Since I’ve lost mom… this is definitely by far the worst I’ve been.  I am not sure what has brought it on… the worst anxiety I remember ever having… the most depressed I can recall being ever… but not because of some event that has happened, just with myself.  I feel so worthless… and that’s just the beginning.  If you are reading this looking into going into HSCT, and you have suffered depression… just my advice… make sure you have it under control… and have someone in your corner.  I knew this was going to be hard… but I think, even though I lost a lot of people along the way due to this disease (MS)… even going through this in attempts to make your life better… and realizing it caused you to lose even more people… and that…. I’ve realized… who do I really have?  I know what I wanted out of this…. Dr. Burt thought I was worth it… but what did he see I didn’t?  I am crying so hard as I write this. I have finally opened up and getting some help with all this…it’s going to be a process though as I should’ve called my other clinic today… but was so wiped by the time I got home I didn’t.  So this is why I haven’t updated lately.  I have been trying to figure out how to deal with this…. I waited a little too long.  Please don’t judge me based on this… another fear.  Just understand… not even for me… but maybe a loved one you know, a friend… a coworker… anyone… if they suffer from depression and/or anxiety… don’t judge.  Trust me…. they have no control over it.  I have seen online so many people who judge and say that anyone who is ‘sad’ or ‘anxious’ should be able to just deal with it and take their mind off of it.  It’s not that easy for everyone.  Trust me… if I could escape my thoughts for the last couple of months to even just get 5 mins of happiness or peace from not worrying about anything…. I would.  I can’t take it… and it makes you feel weak.  And if someone seems like they are all alone… give them 5 mins. of your day… because you never know how big of an impact that can make.  I am not asking for any sympathy…. but maybe if this ever reaches 1 person who judges someone with these issues and maybe makes them re-think the way they react to others with either of these issues…. would make it worth it.


And to my fellow HSCTers…… I continuously am reading ya’lls updates… I just don’t comment, especially lately for obvious reasons.  But I read…. and inside am so happy for good updates. If I see someone having a rough time… believe me… you’re in my prayers.

~Carina ❤

I need a Cheerleader…

Okay…. so usually I try to stay optimistic through everything… especially the past couple years.  But… I don’t know if I can right at this moment.  It’s hard because you watch so many people on their recovery from this procedure.  You have some that seem to just fly through it with no difficulty, some that have some issues, some that are having a really hard time…. and some that have many problems.  So, I feel like I should be all positive…. but I can’t always… and when I’m not… I try not to post or write a blog.  But then like tonight… when I have just had it and it’s not going to be a motivating blog… I feel guilty. I know so many look at these blogs, I know I did.  I also feel guilty for complaining… because I personally know of others who are having a much harder time then I am and many more issues.  I feel like I have had it pretty easy for the most part.  But… I don’t want to lie per say… and make it seem like this is an easy road for those coming into it, and I don’t want to seem… like… well… like a cry baby to those who have it worse.
So…. my point? Lol I don’t really know… so here it is…. this sucks.  Don’t get me wrong… I am soo soo blessed and so so so so SO grateful I was able to have this done.  It’s just… you never know what to expect.  I recently had a symptom come back worse then I ever remember having it.  Wanna know? ****Don’t laugh…. or do? At this point ah well…. lol****  Ok… so numb/tingly right armpit. Hahaha I laugh even when I say that word.  ****Immaturity I haven’t over come yet**** haha.  But…. as funny as it is…. it is so so uncomfortable!  And then of course… I freak out…. I just had an enhancement mri in March.  That was supposed to lessen my fears.  But this comes back…. I ignore it…. and then my anxiety sneaks in somewhere… and it all builds and builds.  Weather changes….. 80 something one day… 50s the next…. then 70s…. it’s messing with me.  These MS hugs have become so intense that I just want to cry.  And there is so much that has been miraculously so much better since transplant and i love it!  There are things I have not been able to do in years and years… But I don’t know when to stop doing things… and then daily symptoms I still have get so bad and I wind up in misery by evening/night. So that’s where I am at.  Yes I have emailed 1 of my nurses at Northwestern once, no answer. So I let it go at that (I know they are so busy and over what is hopefully minor just ugh).  I see my primary in a week for other things plus ask him to run some blood work just to make sure nothing else is going on.  So yeah…. if you are looking into HSCT just don’t expect it to be a walk in the sunshine for sure…. rollercoaster recovery is no joke.  Don’t get me wrong… if needed… I would do this transplant again in a heartbeat.  I believe in it and Dr. Burt.  Unfortunately I’ve always had bad anxiety and depression issues.  On meds… but give me enough time and too much time alone…. I tend to think the worst.
So I just thought I would update and vent and sorry I am not all full of joy…. lol. Maybe a good night’s sleep and tomorrow I will be????  Hehe.  But I will not end this entry without pics of some positives and my pets of course!!!!!!

^^^^^
Would go crazy without them ❤

^^^^^^^
Janesville (and Max!) Mobilizing 4 Change!!! 🙂 ❤

^^^^^^^^
Puzzle… Coloring… Glass Art.  How I spend my time to distract myself and relax. 🙂

I hope everyone has a wonderful Mother’s Day tomorrow!!  **To my mommy in heaven: I miss you so so much!!!  I have a gift for you tomorrow… you’ll know what it is…. Love you and miss you mama!!!!**  Everyone take the time tomorrow to tell your mom’s you love them!  Again sorry about the complainy blog, I’m sure it’s blabber/rambling too, and of course I don’t take the time to edit it… so sorry… 😦 Lol…  next one will be better 😉 

XOXO

~ Carina ❤

Depression… then Heat…

So I am now over 7 months post transplant… and up until a few days ago… here is how I felt:

Yup…. nothing seemed to help… and I couldn’t tell you what my deal was. In the middle of it I did turn 31.  Still lingering but hoping I can fight through it.  I’ve fought with depression my whole life. This was the worst I remember feeling in quite awhile though.  Maybe it’s loneliness?  I am home alone a lot.  Or missing my mommy? Who knows?  But it’s up to me to snap myself out of it and get back on track with recovery here.
So during the depression/anxiety phase…. as you see it snowed.  Temps were cool.  50’s got me excited.  But then the temp. has climbed the last couple of days.  Friday I got in the car and unlike before… I didn’t get an MS Hug instantly when I got in. Which was quite amazing.  But my nystagmus & eye issues still worsened.  Some pain & tingliness.  Took a walk after we got home from school… and it was the roughest so far.  Legs (especially right leg) was acting up so bad.  Didn’t last too long.  Overall…. better then I remember it being like previous summers.  But then Saturday came.  My Grandma picked me up and we went to a few rummage sales.  Temps hit 8o this time.  Well by the end of that…. the dreaded MS Hug… and pain just radiating down my right arm from my back.  Quite painful and scary.  BUT…. I must remember….. my MS has stopped progressing.  I have NO enhancement!  And because of that any side effects of the damage MS has previously done to me I can deal with.  I just gotta remember although some days I feel spectacular…. certain things will still send me on a fast downhill. But that’s ok.  I am alive… I am fighting…. and I have people I love so dearly.  I am blessed.

Some random pics below.  I think Benny didn’t like me putting bunny ears on him.  When I am sitting down and not overdoing it my eyes are still working with me enough to color and do crafts.  And I finally got my HSCT shirt!!!  But I ordered it when it was cold…. so now I need a t-shirt.  If anyone knows of anyone selling them again PLEASE let me know!!! ❤  And the last picture…. I only have 1 pair of jeans that I like…but they are a little loose.  So I bought another pair a size smaller…. I didn’t think they’d fit… but they did!!!!  Despite when I was depressed badly I still tried to exercise everyday…. and move.  Before transplant I couldn’t barely get myself on the stationary bike… let alone do anything afterwards. Now even on bad days I can get myself on it…. so yay!

I hope everyone of you had a wonderful Easter.  Thank you to those who continue to offer your support and prayers to me.  I can’t thank you enough.  Ya’ll have a wonderful week and enjoy life in whatever way you are able to.  Xoxo

~ Carina ❤

Chicago… Day #2 (Posting late….)

So… I am writing this late… but I feel I still need to brag about my free day in Chicago.  It was a miracle. ❤ These are the moments I thank God for, it’s the little things I used to take for granted.  I could not ask for more… that’s for sure.
We woke up, had breakfast and checked out of our hotel.  Grabbed some stuff from car, and headed off to Prentice.  Rainy and chilly day it was.  Max wanted to stop by the fish Wed. (and who am i kidding? I did too.. lol) but we were in a hurry. So we made sure to stop by on our way to Prentice (These are inside the children’s hospital part):

Then we continued to Prentice. First we stopped by Lee Lee’s room.  She is such a sweetie!!! Adore her!!! **Hoping as I type this she is maybe being discharged to head home ;)**  Then we stopped by Jackie’s room. I had never spoke to her but heard she had no one with her, so Max & I went in to say hello and drop off a little goody bag.  I usually do not do that… I am one of the shyest people you will meet, probably half the reason when I started this process I avoided meeting people, and regretted it.  Jackie… if you see this, I want to say i think of you daily.  You are amazingly strong to go through the transplant process alone. **Hugs** to you and I hope you are doing well and hopefully seeing your family very soon (If you have not been discharged yet)! ❤
After that Nate went back to car to get a different coat and Max & I headed the other way towards the Contemporary Art Museum.  We stepped out the door…. and oh my, they do not call it the windy city for no reason!!  The rain was painfully cold, and the wind took Max’s hat with no warning.  Thankfully he was able to catch it.  Then we braved the rain and cold to get closer to the museum.  I wore my shoes that are breathable so I don’t get too warm and have MS symptoms act up.  Well… in the rain that was a bad idea.  Felt like I had ice water in my shoes.  Brrrr!
So before this… I can tell you by this point in the day I would be wiped and need a long re-coop session before I could do anything else.  But not today! Once Nate caught up we walked to the museum. My squishy feet and soaked head to toe (Mind you… I told the boys to make sure to bring warm coats because I didn’t want a repeat of last March. They did… but I didn’t. Lol so I was walking in this wind and rain with wet feet and a light sweater. Lol).  The stairs leading up to the museum entrance… well there is a lot. I didn’t even know there was another option. I was ready to fly up them, then Nate asked if I wanted to take the handicapped way.  I said nah I got this.  He didn’t seem to positive. Let me tell you…. I rocked those stairs.  Even during pretesting I could barely do like 5 steps without getting so completely weak with numbish tingly legs… and heavy legs… and no energy what so ever left. But this day…. great day:

Is that not the most amazing thing ever??? Could I do that everyday? Probably not. But before…. it was no days could I do that.  Is that just not amazing???? Ahhh!!!!  I did have my cane… but even with that prior to now that stair trip would have not happened. To add on to that… we went to every part of the museum pretty much and I sat down only a couple times… and not for that long!  I was all good until heading back to the car to leave Chicago. Dropped my cane twice.  Second time in parking garage was a super sweet guy who hurried to come help me.  But Max noticed 1st and got to me.  I told the nice guy thank you so much.  It is amazing when things happen like that… to know there are people who still can take a minute out of their day to help someone is just so neat, because everyone seems so busy all the time these days. ❤
So that was my 2nd day… just amazed me that I was able to last from wake up time till after museum with no breaks really.  We left in a hurry after that though because I knew as we got closer to WI the threat of a mix/snow was there.  And anyone who knows me…. I do NOT do well on the roads in that stuff.  Ever since an accident involving a state patrol like 13 years ago. Lol. But I think I did fairly well and kept as quiet as I could so Nate could just concentrate on driving. Lol:

52
fun fun (sarcasm)

So that’s the end of that short Chicago trip.  March – 2o16 = 1 year off of all DMD’s for MS… and no enhancement/activity on MRI! Blessing!!!!!!!!

~ Carina ❤

53
My Featured Image… but putting it here too to make sure ya’ll see it! Found it on google images and really like it!