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 :)
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