It’s been a couple years…

~ ceena03 ~ Leave a comment
Missing my 2nd and 5th year… 😦

Wow…. I can’t believe it has been a couple years since I have wrote on here. So much has happened, I won’t even try to bore you with all the details. ; ) But… years 3 -5 I had no new progression!!! Had a scare with my 5 year scan, the radiologist reported there was a new lesion, I freaked majorly. My neuro went through all my previous scans and found it in a previous scan from 2o11 or 2o12 (I can’t remember which), so crisis averted. I am still in remission. 😀

Couple pictures from our last time in Chicago for HSCT related reasons, we didn’t know it would be our last time, to top it off I didn’t take many pictures for once. Lol:

Even… ok you know what, side note here: It has been so long since I’ve been on here and they have changed so much. I am getting slightly discouraged. I can’t keep my text the way I want it, so I give up. So if the text changes I apologize, lol.

So as I was going to say, even with that great news I am still struggling with my MS symptoms. Some days are really good, some days are really bad, and some are ok. I just at times feel useless to this world. This pandemic does not help. Mentally I have been a mess. I hope everyone is staying as safe as you can and hang in there. Speaking of pandemic…. vaccine. It is fantastic news, and if I was a normal person health wise, I wouldn’t hesitate at all to get it, but here’s the thing… Dr. Burt I know was not all for vaccines or getting revaccinated if you lost immunity to some, which I did, but could depend on herd immunity. Regarding the flu, I just stayed as safe as I could during flu season. But Covid. I can’t keep living like this. It is not even just MS or HSCT, I have other risks for Covid also. I am leaning towards risking it and getting the vaccine, but I’m absolutely terrified. I will be talking to my neuro about it on feb. 4th, but I know in the end it will be up to me. I don’t know what the likely hood is that this could bring my MS out of remission, and Dr. Burt has left so can’t talk to him. So that is my next dilemma, and it scares me so badly. Both are horrible diseases, one is just much more deadly. I just can’t imagine going back to the way I was progressing at such an alarming and fast rate, so much unknowns, scared as things got taken away from me (ex. vision issues, feelings, energy, & more). Whether this makes sense I don’t know, I’m just confused and freaked out and I wish Covid would just disappear, but we all know that will not happen. 😦

What have ya’ll been up to if you’ve been staying isolated? Or staying home more than usual? I have been hooked on animal crossings for the switch most of the time. I burnt myself out on that. Now I’m playing House Flipper. Haha don’t judge. My son makes fun of it, but there is something relaxing about cleaning up and renovating houses. Hehe. Otherwise I’ve been working on my crafts when I’ve been up to it, trying to keep up with exercising. One thing I don’t know what I would have done without this past year is my kitties. My kitties and some of my fav. craft projects from last couple of years:

One thing I miss so very much, is missing a year of my nephew’s life, when he grew the most. He’s a year and a half now. I am beyond grateful we got to spend some time with him on Christmas Eve, masked up and safe as could be of course. 🙂 And I am beyond excited and so blessed as I have another niece or nephew on the way! ❤

Well that’s my update after 2 + years. I will update once I know for sure when/if I get the vaccine and how it goes if I do. Otherwise for now, as hard as it is staying home and staying safe for 1o months, I just try to remember how blessed I am that I am still in remission and how lucky I am for the few people I have in my life. I look forward to the future. ❤

Everyone stay SAFE. And if you’re struggling, hang in there. I’m not going to say who on here, but someone very dear to me had struggled a lot in the past couple years, and at points this year was at the lowest you can be. I also know of others who have tragically done the unthinkable and taken their own lives as they thought they had no other choice. PLEASE please reach out. There are people who always care. Please believe me.

– Carina ❤

Very late 2 year Update…

~ ceena03 ~ 4 Comments

So… 1st of all… I hope all my fellow HSCTers are doing well! 🙂 ❤ I have been very out of the loop lately… but more on that later…
2nd of all… about our 2 year visit!!  I left off on my last blog post that I was horribly nervous about my 2 year follow up. I thought for sure MS was back with a vengeance. And I was terrified it was going to be true.  Before all the tests and the visit with Dr. Burt, we chose to go to Shedd Aquarium this year:


Just a few pics of probably over 1oo…. Lol.  I really wish I would’ve updated this sooner… probably would’ve remembered more to put in, stupid memory. Lol.
During tests and such I found out that my EDSS has stayed about the same, which I can handle. Better then getting worse for sure.  I told the person who was doing that testing (Mind you no MRI results yet, so I still think my MS must be active again), my concerns about how I feel like compared to others that I am not having miraculous huge improvements.  Sure I’ve had improvements, and I knew Dr. Burt told me at the point I was at, that he could only guarantee stopping the progression, but it’s still hard to see so many others with these huge improvements.  She said of course that I can’t compare myself to others and that even if I didn’t know it, there are many like me.  So that helped some… especially after struggling so bad with that stupid math test.  Maybe before my final follow up I’ll get it down somewhat… :’D
On to result day:
Anxiety overload.  I remember that.  Lol. He told me absolutely NO progression on brain or spine!!!! I think I was in shock at that point…. Lol. Which led him to discuss depression and anxiety issues.  He actually spent a lot of time with us that day, it was weird… lol. 

2 Yr - Results 01 - Brain2 Yr - Results 02 - Spine

Just adore him though…. he has given me 2 years of my life back! Even though I don’t have those miraculous huge improvements, I still am able to do more then what I was.  At this point the biggest thing I’m having a hard time accepting is my eye issues due to 3 major relpases that I never fully recovered from:
1 – Nystagmus Relpase. Worst relapse I had… severely limited my ability to drive <<I still miss it to this day!>>, my ability to watch tv at any angle unless I am staring straight ahead, my ability to turn my head without getting dizzy and nauseous and more. But, I must try to remember, I can see, and I am not getting worse!
2 – Optic Neuritis #1. Was scary losing most of my vision in 1 eye. The way colors faded….and what I went through steroid wise… ugh. But I was told once I got through it not to worry… because it’s unlikely to have 2 optic neuritis relapses… yay…
3 – Did I say yay? Haha. Optic Neuritis #2.  No explanation needed. Lol.
So to this day that is my biggest debilitating thing due to MS I am trying to accept and live with.  At this point, it is not thought I will see many more improvements from the HSCT, which again, is ok.  At the rate I was going, I wonder if I would still even be here? So since I have my life, I can learn to live with this and everything else MS has done to me, because I no longer wake up everyday wondering what MS can take from me that day. So I got this. Accept. Be Grateful… cause that I truly am.

So, moving on from my 2 year follow up, the reason I’ve been out of the loop lately on any HSCT/MS sites or with talking much to anyone:
As many of you know, I lost my mom unexpectedly almost 6 years ago.  When I lost her, I felt like I lost most everyone in my life along with her.  I didn’t know what I was going to do.  If it wasn’t for my Grandma, I don’t know what I would’ve done.  It took her awhile, but through it all she helped me find my faith again.  As the years went on after my mom’s death, I saw her go downhill.  But she was my Grandma… she talked about the end of her life coming, but, nope.  I needed her and she needed me, so she’d always be there.  Well long story short…. (and I have tears just trying to type this), we had to get her in an ambulance at the beginning of November as she was not doing well (and boy was she mad), only to find out she had lung cancer (which we knew deep down), to find out she had about 6 months, to watch her give up very quickly, watch her lose so much of who she was, being there daily as much as I could…. leading up to the worst night on December 7th… I told her stuff that evening, although I didn’t know if she could hear me… my Aunt & I had an extremely rough evening with her….and then she passed the next morning.  The 6 months we were given turned into a month.  So after that…. idk. And that’s kind of still where I am at… i don’t know.  I miss her and my mom so much it hurts.  But… at least neither of them are suffering anymore.  And then the day after Christmas I got sick.  That lasted like a month and a half.  Got better for like a week or so, then the flu got brought into our house.  Max had it.  After much debating, he got on tamiflu and improved very quickly.  And I went on tamiflu for prevention (Still on it, plegh).  So, that’s why I’ve been quiet, but, I feel like it’ll be ok.  So… Carina is back. With lots of personal goals I want to accomplish. 🙂 ❤ 

My Grandma and Me many years ago 🙂
Gotta love my Grandma on her 3 wheels!! ❤ Gonna miss seeing that bike out this summer, 😦

 

– Carina ❤

PS – Sorry so long…………..

It’s been 2 years….

~ ceena03 ~ Leave a comment

Wow!! It’s been since my 1 year update since I have blogged at all! I am so sorry!! 😥 And this one will not be very long until I get back from Chicago for my 2 year follow up.  We leave on Monday morning. I am so so nervous!! I don’t think it’s been until recently that I have truly been terrified that I could no longer be in remission. I have not been feeling the greatest since about the beginning of August. Nothing new symptom wise that I can remember (make a list of symptoms you have before you go into transplant btw… I wish I would have!), but…. I just…. i don’t know. I don’t know if it’s stress… or nerves…. over thinking…. fear…..???? Leading up to this 2 year mark since transplant I have thought a lot about where my life was heading, how fast I was going downhill… how bad the relapses were, and how terrified I am of going back to that. Back to the unknown. Although I have not improved symptom wise very much compared to others, I am functioning somewhat  better.  I am not as afraid of waking up every day not knowing if I will be able to walk when I get out of bed, or if my vision is going to go away again and worse, or permanently and so much more.  But now, I am afraid of going back to being afraid.  Idk. I suffer from really bad anxiety and it has gotten significantly worse since transplant. I am not sure why.  I still have 3 and a half more days until I find out my results… and I would really like to enjoy my time with Nate & Max and try not to be worrying the whole time.  Worrying changes nothing I know… so I wish I could just turn the worry switch off. Lol.  Please just pray for no progression or enhancement.  I will definitely update my blog after we get home.

We will be heading to the Shedd Aquarium the 1st day! I am definitely excited! I’ve always wanted to go there. Tests day 2. And Dr. Burt Day 3. <=== can’t wait for day 3.

Below are some pictures from this summer.  We did go to Mt. Olympus also! Those are the times I must remember! There is absolutely NO way before transplant I would’ve enjoyed anytime there…. or made it through a day. It was amazing…. totally draining…. but so so worth it!! I can NOT tell you a time that I went somewhere with the boys and was actually able to truly enjoy myself at times without being in tears.  I can’t thank Nate enough for everything. He has been there through so much with us…. and still is.  I bet he really cannot wait till wednesday is over with. Lol. Anyways…. back to the summer!!

Still loving to woodburn!!
Max’s 1st day of 8th grade! High school next year!!! Yikes!!
I spent a lot of time in lazy rivers at Mt. Olympus! And I could have my phone in the water with me!! Lol
After my 1st rollercoaster that I’ve been on in 15-20 years! And despite my nystagmus it didn’t make me sick!! YESSSS!!!!
Summer days outside 🙂

 

I really did enjoy a lot of this last summer.  So blessed and grateful for every single day.

I hope & pray everyone is staying safe in all the fires, hurricanes and such. ❤

I will be updating soon with results…. good results…..

Xoxo

~Carina ❤

IT’S BEEN 2 YEARS!!!! (And 2o lbs. gone this year! 🙂 )
2 years since transplant!! And Hopefully that MS is still striked out!!!!!!!

1 year Update (Very Late) & Worchester House Pics

~ ceena03 ~ Leave a comment

               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:

 

(Brain)
(Spine)

 

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)

~ ceena03 ~ Leave a comment

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!!

~ ceena03 ~ Leave a comment

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):

Swimming!!
Watching Knockerball in Edgerton!
Fun @ the park in Edgerton!
The fair!!!!

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:

It’s like a theater in my son’s room… lol
Lots of basketball fun on the 4th!
Lexus re-introduces me to the snapchat world… lol
Ssshhhh….. they were making Lexus cupcakes for her birthday 😉

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…

~ ceena03 ~ 1 Comment

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.

Yup… how I feel everyday lately. On the way to the dr. for depression/anxiety issues. Lookin just peachy huh? 😉
Right


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…

~ ceena03 ~ 1 Comment

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!!!!!!

Are they not the most adorable kitties when they cuddle??
She loves me 😉
My little Sparky boy!

^^^^^
Would go crazy without them ❤

Good job Max!! Finally got his YOLO shirt!!!
So proud of him for participating in this group 🙂

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

1st puzzle since transplant!! Went pretty good!! 🙂
Still coloring… Lol 🙂
Max and I are still messing with glass art. It’s fun to experiment with 🙂
Mine 🙂
Max’s 🙂
All done… time to find a new project! We are done with glass art for now! 🙂

^^^^^^^^
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…

~ ceena03 ~ Leave a comment

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

Yup… in bed with 2 of my kitties… didn’t want to move.
Snow in April? Doesn’t help things.
Depressed + Don’t Feel Good = Hopelessness
Yup….

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!

Sorry Benny 😉
Color time ❤
Need a t-shirt now!
Let me know if anyone is selling them again!
Down a jean size!!! YES!!!!

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….)

~ ceena03 ~ 1 Comment

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!