Dr called yesterday....

   I could have done this blog entry last night but to be honest it would have been a lot of raw emotions and I really just wanted to not focus on that dr call.
   Dr B called before I got home to take Steve to the IV thing. I knew when I stepped in the door that something was up.
   The MRI scan shows that Steve has two active lesions on each side of his brain and one active lesion on his neck/spinal cord. The dr emphasized these were new and active. And by active that means they are not done doing whatever fun things they are going to do. But it puts a medical term to what we've seen going on. Steve's old symptoms from nearly two years ago...extreme tiredness, achy legs, and speech issue when tired (with the speech issue now magnified to any time he's the least bit tired) and his new symptoms of tingling hands/feet/back/chest/stomach, stiff hands and toes, gait/balance issue. What is interesting is Steve nailed the problem before the scan came back. Said he just "felt" he knew what it was.
  So where we stand now is he will be monitored, have blood work to see if his body can handle the meds she is thinking of moving him to, new meds possibly, possible steroid push again. Love how with MS the most repeated word is possible. It may possibly do this, we may possibly have to do this. No wonder drug companies consider so many MS drugs as new age or specialty because there is no clue on whether they really do anything.
  So to say it was a rough evening is an understatement. We went and did the IV thing (which went well) and we kept the attitude normal around here the best we could for Kaya's sake. We answered her questions honestly. In her mind Daddy has a spot on his brain that is eating at something. Which, is scarily close. We explained to her that it may mean a few dr appts and finding out what works and that she didn't have to worry. That it was ok to be upset and scared but we'd answer everything the best we could. She was satisfied with the talk and we left it at that.
  Steve's next biggest fear is another MRI scan due to the cost. 900 a pop isn't chump change and we just had one this week. Another fear is that we fought to get into the copay program for his current shots...will our insurance cover the new medicine and will there be a copay program out there? How long will he fight side effects? Will it be a weekly shot, daily shot or a pill?
  So a lot of questions on our end and worries but they'll be answered soon enough.
  We've had lots of friends,coworkers, and family rally around us. That means more than anything.
  My entry last night would have been crying inside, fear, and anger at this dreaded disease and worry for my husband. Today....after an extra hour of sleep and laughing at Steve's steroid energy lol I can see a bit clearer. Is there still tears inside some? Yep. Is there still worry for my hubby, fear of what can happen and money worries. Yep. But inside I know we can beat this and it's just a rough patch. The scariest thing is we won't know what all the lesion can do till it's done doing it's thing. Then we have to hope Steve's body repairs the spot and tries to heal itself.
   So focusing on this deal but not letting it bog us down. Just another bump in the road on the way to the top of the mountain :) :)

Rough couple of weeks...and trying to stay strong

  I could sum up the last few weeks in four short words...very tiring and frustrating. We had been noticing that Steve has been more tired than usual. We had noticed his words in the evenings late were slurring a little. We noticed his gait was dragging a bit more. The Saturday we started the garden...by that evening he was holding his head and completely drained. Maybe we wanted to pretend that it wasn't happening. No, we knew something was going on but we thought his normal fix all...rest, a few headache pills and staying cool for a few days...would fix it. It didn't. By Easter afternoon it was apparent something was not right. His speech was very noticeably slurring,he was exhausted just walking to the garage, he was to the point that he wanted quiet and to just lay down.
   Monday morning he called the dr and as soon as she heard his symptoms...stiff hands, toes and fingers that were locking up overnight, tingling feet/hands, itching/tingling burning back,chest and stomach, slurred speech and balance issues she immediately got him in on Tuesday.
  Tuesday I worked a straight shift and took off to the next town to the drs office. As soon as he opened his mouth and walked onto the scale, she had that "look". The same look she had gave us nearly two years ago. She performed a few tests, checked his vision, checked the new vitamins he's taking for any problems then said it "I'm almost certain you are having an exacerbation." The fancy medical word for relapse. She told us that she thought it was confined to his brain/neck cord due to how it was affecting his speech etc. Ordered an MRI scan for the next day and lectured him to not put off symptoms. Easy to lecture on but hard to follow when symptoms of every day things meld into relapse symptoms but I appreciate her fast response to our calls.
   Wednesday we arrived at the MRI place, next town over, at 1. Steve took his pretty high dose of Valium to relax him for his test. Once in the MRI room we realized the dr's secretary had faxed the wrong MRI machine order. Steve can ONLY do open MRI's due to vertigo and enclosure issues in the enclosed ones. Dr faxed correct orders and then they tell us...our apt has moved to 3:45 for the open MRI. Push back stressed feeling and went and grabbed lunch  and poked around the local garden store. Half way through the store Steve's medicine starts kicking in so we get back in the vehicle, head back to the MRI place and Steve grabs a nap in the car. Thankfully he woke easily and by 3:45 he was in the machine, I had my less than desirable magazines to read lol and the 3 hr MRI started. They do his brain and neck with no dye first. Stop and let him stretch then inject dye and do it all again. VERY long, very tiring. Especially when for the last two weeks we have not had any great sleep. He can't sleep much due to feeling like crap, I can't sleep with him up and down.
   The dr also decided Steve needed to do a 3 day regimen of steroid IV pushes to push back the relapse symptoms and jolt his system. So today we sat for 2 hrs and did the IV...we will do it again on Friday and then the final on Sat. Kaya came with us and behaved awesome. Once they started Steve's IV and Kaya was sure he was ok (and I was too lol) we headed across the street to the park for 45 mins then back to sit with Steve and get us all something cold to drink. The steroids make Steve's mouth feel like he's sucked on a roll of pennies so he's constantly munching hard candy. They tape the IV insert tube to his arm so they don't have to retube him (saves him pokes and us money) for the next 3 days. After the IV bag we headed out for icecream. By day 3 of the steroids he'll be like a monkey on crack...super hyper, nearly unable to sleep etc as it's revving up his body, then day 5 he'll crash wayyy low (I'm talking low) and the mood swings will happen...then he'll be back up to normal and feel great. It's a weird deal but it does work.
  Steve has stressed about the cost. Dr is $140 after insurance per visit (he had 2). MRI cost $900 up front after insurance. It'll be another 300 for the tech to read it. Then we'll get the bill for the dye and needle. Roughly $260 PER bag of steroid plus fee for the tubing etc. Not cheap. But I told Steve it is what it is. We can't change the price or what needs done. If it cost a million bucks to make him feel better, we'd figure it out and do it.
   I wish I could say it's all sunshine and smiles. It's not...it's HARD. I am one tough cookie, or try to be but I won't lie. Last night I found myself tucking Kaya into bed, making sure Steve had a cold drink, the ipad and was ok....then I started to take my hair out of my ponytail to get ready for bed...and the tears started. And they kept going. Hard, tired fed up tears. Tears that had been building at the corner of my eyes for weeks. Tears of frustration, fear. Tears of anger. We are all tired. Steve is frustrated (his hands are so stiff he could barely write his name at the MRI place), tired. Kaya knows Daddy doesn't feel good. I walk the line of trying to not be too worried/too naggy/ too babying of him while not stepping over to being bossy or making him feel left out. I've seen a strong man sit down on the porch chair, put his head in his hands and cry because he feels so out of sorts, so useless. Is he? No but it's hard. We had began talks of whether we wanted to have another child and what life would bring, we had started laying out summer plans, we had big things on the horizon, Steve hadn't had any relapse issues...then BOOM. The proverbial other shoe fell and it fell harder than normal. I let myself cry until I realized that two years ago this week was when he landed in the ER. Two years ago that he had almost the exact same situation. And it's been two long years before anything has cropped up. THAT is a blessing in disguise and sometimes hard to see through the tears of aggravation.
   Tonight I sat on the porch. Tired. Aggravated at how some family has handled this situation. I don't do drama and Steve doesn't need someone falling apart he needs them cheering him on. He's not laying in bed wasting away. MS hasn't beat him. He's just hit a bump in the road we will drive over and be ok. I found myself thinking Man, I'm wore out I've pushed it at work and not even had a lunch all week to be home in time to do all these appts. Then I mentally smacked myself and thought "I am so lucky that I could work my schedule to be with my husband. I'm so blessed that my Mom took a half day vacation day to babysit Kaya so there was no stress in that area while Steve did his MRI. I'm so lucky to have a daughter that can behave for the 2 hrs we have to be at the infusion place to do steroids. We are blessed with a good medical staff, nice people at the MRI place and IV place. That every day my brother has sent his love to us, my Dad has checked on us and my Mom has pushed those tears away by being strong and I follow suit.
   I've seen some of those young people battling MS and various ailments at the Neuor office..those people in wheelchairs or can't speak. They have it rough. We are simply having a rough patch that will work out.
  I'm thinking good thoughts that once this week is done things will calm down, fall into place and I hope that some people that have relied on me to do all the legwork will do some of their own and call and check on Steve. People don't realize how much that phone call can mean.
  Most importantly I know my husband's inner strength and will power. I know that he is a Daddy and hubby first, MS patient wayyy down the list. Medical bills are always going to exist but at least we pay ours/can pay ours and we do things on our own. We are each other's strength during hard times.
  This evening the drs office called with the MRI results but we were still at the hospital. When we got home they were already closed. Maybe it's for the best. One more night of not positively hearing "relapse" or knowing it's attacking/attacked this part of his brain may be what we need. We'll find out the results tomorrow, then head to another IV infusion.
  One thing I know is that I love my husband. I cannot imagine life without him or even without him involved. We do most things together and one wink out of him still melts my heart. Neither of us do drama and we don't have time to fall apart. SO others can follow suit and be on our team, or they need to move to the side to let us keep our stride. If it ever came down to something serious...then we face it together and we find what works for our quirky little family :)
 

Easter

   The Easter season has went well. Weather has been great. Kaya got to enjoy an Easter egg hunt and party with her little cousin at our cousin's place of work. Both had a ball, gathered a lot of eggs and I love that Kaya handed a little girl that was having a hard time finding eggs one of her own :) After a fun hunt Kaya and her cousin enjoyed cookies, punch and coloring.
  We normally host Easter dinner and this year was no different. I decided to change up the menu from the normal we have. Steve did a Cajun deep fried turkey (he has the market on deep fried turkey...I've never had any as good as his!!). I did homemade biscuits, deviled eggs, fried potatoes, and southern fried corn (a house fave!). Also made Hawaiian wedding cake. My mother in law added in a veggie tray, cheesecakes and pop. Had my Dad, my mother in law, my brother in law and his friend in and there was no complaining about the meal lol
  Kaya was excited to see the Easter Bunny found her basket on the bar and filled it (I LOVE this idea mainly because I hate buying a new basket every year and there's only so much reuse ideas you can come up with without getting stuck with a ton of old baskets.) and left her a surprise in the garage. One happy kiddo. She was excited over the candy, her new shorts and odd n ends in her basket but loved that she said "I'm most excited it's a family day" :)
   Steve has been feeling pretty tired lately and laid down right after eating, then got back up to visit. Once everyone left Dad fixed our rider (VERY thankful for that...I can push mow the yard and I did last summer but the rider is faster and with the heat we've been having in the summer...yeah). Then we did an Easter egg hunt with the golden egg having a quarter in it. Kaya loved it.
   Very nice day full of fun, family, laughter, food and blessings!

2014 garden is underway...

   Our compost dirt is awesome this year. Black gold as Steve calls it lol The only thing I wished we had thought of when we did our original bin was to either have raised it higher or to have added the door to the front. But it's still functionable and we will remember it when we get our new one built.
   We decided to brave it last weekend and while enjoying the awesome weather, get the garden started. We still have two more beds here to do and our garden to put in at my Dad's place but so far we've planted here: 

  Kale, broccoli, cauliflower, lettuces, green beans, peas, onions, Swiss chards, and our cilantro on the seed rack is going like crazy.
   This year we also decided to put in a sour cherry tree. Good for eating cherries right off the tree or for canning. We have a patio peach from last year that makes mini peaches that you can use for jams/jellies or baking. So hopefully the cherry tree will take off too.
   

:) :) :)

 

 

LOVE THIS :)
We weeded garden beds last evening and turned the dirt. Ahh love seeing all that rich black dirt

turned over. Plotted out what is going where. Figured out how much dirt we needed to add to what beds, what beds needed a bit extra of nutrients and how we need to change up where certain things are (Take the warning seriously about NOT planting tomato plants next to cauliflower...it will ruin your cauliflower for sure!!)
This is the first week of warm nice weather. Gentle breeze (other than yesterday and it was strong enough as Kaya says to "knock the curls off your head!" LOL) Getting us itching to start the garden and envision the bounty we'll have. What we don't grow here or at Dad's we will get from the local farmer's market.

We still have to till at Dad's but things are going well. Chickens are doing awesome there and Sardine and Rose have proven themselves good layers. We now have our first dozen fresh brown eggs :) Kaya is super excited as are we :)

I HATE

  There are two letters when written beside each other that I detest. Rarely do I give into emotions and just say it..but ..I. HATE. MS. I hate those two letters that combine to make my husband feel so wore out that he actually cannot sleep. Those two letters that sum up a mass disease...MS has something like 50,000 symptoms!!...and makes people quickly dismiss it.
  I hate how Steve battles it so hard and when he gets to where he is feeling great..it rears it's ugly head and says "HAHAHAHA YOU just thought you was feeling better". I hate how the disease can make his legs hurt endlessly then toss vertigo on top of it. I hate how it is a battle of wills within Steve. He can sit on the porch and ache or he can sit in the house and ache or he can lay in the bed and ache. On a good day it's still there....lingering in the shadow, taunting, causing the person that is fighting it and their family to wait for the other shoe to drop. I hate how it makes me feel as if I don't have the support system I should out of some people, I hate how it makes me wish for one day those folks would battle this in Steve's shoes or mine..and I hate how it caused me to be bitter till I realized...it's their loss not ours. We have who we know is behind us 100% and will always be there for us...fair weather isn't our thing.
  It forces wives to have worry in the back of their head that today it's going to start a relapse. That today may be the day it affects some serious part of the body. Today is the day it will decide to show us who is boss. It forces us to be doubly careful during flu/cold season because what Kaya and I can get and be over in a few days...Steve will battle for weeks. Which alters MS shots, which starts issues again if let go too long.
  It forces Steve to feel like inside he can't win some days. If he pushes himself hard to do things with us....tomorrow will be rough. If he doesn't go with us and rests...then he feels as if he misses out. It makes me feel if I say "Hey go with us." that I pressure Steve to do things or make him feel as if he has to...but if I don't ask it makes me worry I'll make him feel as if he can't keep up or is left out.
  I hate how it makes him cranky even though he tries to hide it. How it makes his eyes have that "I'm so tired of being tired look". How it makes a strong man just want to curl up under a blanket and rest.
  I hate how every person battling MS feels as if they are the only person battling it simply because it's a hard disease to understand. I know at times I've felt like it's us against the world because all of my friend's and coworker's husbands are healthy or have no issues. I'm thankful my friends are all nurses or medical fields and understand it 100% and have been our rock when we needed them. And I've realized that looks can be deceiving...just like with MS. Steve doesn't "look"sick...and I've found out some people I know/work with/friends with have situations that I never knew of till we started talking.
  Two years ago this month MS decided to become part of our lives. Two years ago around end of May or so we had the name Multiple Sclerosis attached to our lives forever. A good 6 mo into that first year we fought insurance companies, we fought getting into a program to even be able to afford Steve's MS shots, we fought family that just didn't understand, we fought fear daily, we fought medical bills, we fought iv drips of Steroids to prep for some serious MS meds, we fought reactions to shots that made Steve burn alive with 104degree fevers AFTER 1600 mg of ibuprofen, shakes so hard it literally wore his arms/legs out, and mood swings that would cause anyone to throw their hands up.
  But you know what...after getting this rant out I realize...we fought it and we won. Nope, MS isn't gone it's still alive and kicking..but so are we. Emotions can be on high but I've learned to stop wondering why those we love just don't get it and don't realize what a phone call checking on Steve would mean to us or just being there for us means. I've learned to stop questioning why things go the way they do. I've let my anger go and I try hard to let my fear go. I hold tighter those that are there for us, my Mom/Dad/brother that are our rocks, those that do understand and my awesome coworkers.
   We are in this for the long haul and I have no desire to lose my husband or give in to MS. I'm tired of hearing people say "You're so strong." For what? For being there for my husband that I took the vow to love and cherish, sickness and health? For standing in the shower letting my tears out so Kaya is no wiser that I worry? For doing what I know Steve would do for me? Nope, I'm not strong...I'm a team player and I love my husband to the end of the world. Then I get aggravated at myself for getting tired of people saying "you're so strong" because I know they only truly care and may not always know what to say.
   I hate that MS makes people uncomfortable at times and the less they know about the disease the less they seem to say or ask. I believe education is the key in any situation.
   He's Kaya's superhero in a cape, the "Daddy has a disease but it's sure not contagious" theory. The man who hung the moon for her and she has to have a kiss from every night or she gets upset.
   So maybe the world needs to look at MS through a child's eyes. It is what is. But it's not the person as a whole.
  Ok...so I feel better after this mini rant. :) As I've always told Steve "Babe, we've got this" :)

Kindergarten Roundup

 
   Ugh. All week those two words have nagged at me. Kindergarten roundup. Kaya has been a ball of "I AM NOT DOING IT" for weeks. Steve has been on the line...very encouraging to Kaya but secretly dreading it. Me...I've put on a brave face but I've been a bundle of nerves and today as the clock ticked closer for me to get off work and hurry home ....I felt like I'd puke lol
   Got home, fixed Kaya's hair (not Daddy's strong point lol) helped her in to her adorable outfit she picked out, told myself I could do this lol and off the 3 of us went to her school.
   Steve went to the same school (he's went to nearly all the schools in the system due to moving etc) and he told Kaya he loved it.
  Snapped the above picture as they walked across the crosswalk holding hands. Captured it perfect....Daddy has always been there to hold her hand when she needed it and always will be.
   As we got closer to the school she walked ahead of us alone. May sound silly but it was hard seeing my curly headed baby walk so sure towards that school. As we drew nearer I felt her hand lace into mine...never has that hand felt as small as it did today. I know on the actual first few days of school it will feel small again..but today it felt tiny. One side of me grasped her hand super tight just as nervous as she was but the realistic be a big girl now Mommy side...grasped it as if it was a normal day and following the paws on the wall...we found our room.
   I can say the paperwork went quickly and Kaya marched right out the door with another girl to begin her test. A friend of Steve's was enrolling her little one so they talked. I won't lie I texted my little brother...my calm always in any storm ...lol :)
   She rocked out the roundup and did excellent other than the areas we knew she'd have trouble in. She's hardheaded in two areas and we have been working hard on that area. We really liked the teachers we talked to, the atmosphere was nice and I told them bluntly I came out of a tiny school system of everyone knowing everyone and I felt a bit lost...they just guided me through things.
  So dang proud of our baby. She's a brave one and faced right up to what she needed to do and scored perfectly on several parts of the tests.
  They are offering a summer course...4 wks of half days, for all kids that didn't attend preschool and I think we are going to send her. Just to take the uncertainty of getting on a bus, waiting in line, raising your hand etc so she has less to worry about.
   Time sure does fly. Where my tiny little baby once was stands an eager, hard headed little lady. Opinionated, self assured, dreamer. I've always said I won't be a parent that says you have to measure up to anything but your own happiness and the best you can do, that won't fret over what other parents do or how they do it...and I guess come this fall we'll start a new journey together. I want Kaya to always reach for the stars, always be improving and learning but I also want her to know I accept her as she is. That she can do anything she wants (she wants to be a veterinarian and a research veterinarian for all types of animals and travel around the US doing it) and we will be right there behind her...the loudest, proudest cheering squad ever :)
    So we begin a journey that has my heart walking around on two legs exploring a new world, gaining knowledge, friends and seeing life in different ways. I hope the world is gentle with her, that she keeps her spark and that bit of quirkiness that is Kaya. I think we can do this................