"Begin today and write in it your goings and comings, your deepest thoughts, your achievements and your failures, your associations and your triumphs, your impressions and your testimonies. I promise you that if you will keep your journals and records, they will indeed be a source of great inspiration to you, each other, your children, your grand-children and others throughout the generations. Remember, the Savior chastised those who failed to record important events." --President Spencer W. Kimball

September 3, 2012

Rainbows Always after the Storm

I know I've mentioned in several of my posts about Ova's situation with his health....or, I take that back, I haven't really mentioned anything about it except that he's bed ridden and in pain and we don't know what's going on. 

I've wanted to write about it for some time now, but I haven't really had the right words.....and everytime I try to start to type things out, I just end up crying....not able to really get out what I'm feeling, or what I want to say....and then it ends up getting deleted. 

I don't want to come across whiny or ungrateful or 'why us' or 'why me'.....but I don't think I can write about it and not come across that way....so I just write.....let me just preface by saying that I AM grateful and I know and understand how blessed I am....sometimes it's just hard....

Sometimes I feel like I can't catch a break.....my baby Katea is an amazing little miracle, and I'm so grateful for her!  Her amazingness far outweighs the trials we had to go through with her pregnancy, delivery, sister's death, months spent in the hospital, worrying if she'd live or if she'd be normal.....it FAR outweighs all that stuff......but unfortunately it doesn't erase it.

Ova lives in pain...constantly....24 hours a day, 7 days a week, 365 days a year....I can't imagine living like that.  He can't even explain what is wrong with him.  He doesn't even know. Is it his bones? His muscles? His skin? He can't tell...everything just hurts.  Most of the time he's able to live with it and carry on through the pain.....and then sometimes, when it flares up, he just can't.  When it hits him really bad, he physically can't walk...sometimes for months.  The longest period of immobility for him was in 2008 when he was bedridden for 8 months.  During those times, the pain gets so severe that if we even touch him, he almost starts crying.

A little over 5 years ago when he had his first really big flare up, I actually called 911.  The ambulance came to our house and put him on a strecher and took him to the hospital.  They ran a bunch of tests on him, drew blood...he peed in a cup...x-rays....everything.  Everything they tested for came back fine and normal so they just discharged him.  We followed up with his doctor who ran more tests on him and did a CT-scan, MRI, spinal tap....they stuck a humungous needle in his knee and pulled out some fluid to test for gout...and everything came back normal.  I actually thought it was gout the first time he started complaining...I mean, gout sounds like a more logical explanation......he's tongan, he loves pork and sea food, the pain was in his legs/knees/feet/hands/fingers.....I totally thought it was gout...and I actually hoped it was gout so he could just stop eating certain foods and pop some magic gout pills and be cured.  No such luck.  The normal level for gout is between 4-8 and his was 6.8, well below the critical level.

So What the heck is wrong with him?

While doing all the testing, they saw a lot of arthritis in his joints on the x-rays....but since they ruled out gout, they drew some blood and checked his rheumatoid levels to check if he had rheumatoid arthritis.  That also came back normal, so they just diagnosed him with lupus.  That was their cop-out answer and I felt like it was just their way of getting rid of us because they had already done a ton of tests and still couldn't tell us what was wrong with him.  Lupus is a type of arthritis, it's an auto-immune disease that attacks the whole body and there is no cause for it and no cure for it.  Keep in mind that he was not physically able to walk at that time, so I was pushing him around everywhere in a wheelchair....back then I was pregnant with Filimone....8 months pregnant, pushing my husband around hoping and praying that they could find out what was wrong with him and fix it.  No such luck.  They sent him home with steriods and pain killers and he must have tried every steriod out there....nothing was working for him, so they kept switching to try and find one that did.  Finally they found one that worked and helped lessen the pain enough that he could walk. 

He's had a few pretty severe, bed-ridden flare ups since then....and he's in the middle of one right now again.  He can usually feel when they're coming on...and everytime he says to me "babe, I feel it coming again" my heart drops and I cringe because I know it means months of severe pain for him....months of single parenting for me....and months of stress.  I get so frustrated, not with him because it's not his fault at all....just with the not knowing and not being able to do anything about it.  The steriod that finally worked for him 5 years ago now doesn't work at all now....so we're back to square one.  He physically can't walk....and is in exchruciating pain all the time....he can't leave the bed at all.... I don't want to sound like I'm complaining because I'm not.  I love Ova and would do anything for him...it's just the frustration of not knowing what is wrong with him.  I feel like I try to do everything and it's just not enough....and what I struggle with most is that life must carry on.  He's right there at home, in bed, all the time....but I miss him....because I have to do everything by myself and go to things by myself.  I do everything with him when he's ok, so when he's not, I'm lonely.  That sounds so selfish of me to worry about my lonliness...when he's in so much pain...but that's what we're dealing with.

He got to the point where he would refuse to go to the doctor....which would infuriate me....I didn't understand why he didn't want to go and try and get help.  Then he explained to me that I just don't understand.  I don't understand how painful it is for him to move....and then to go through that much pain just to have a doctor tell you they don't know what's wrong with you, and just give you a ton of different medications or to do the same tests over and over again with the same ending results just wasn't worth it to him.  I was so glad for the explanation because honestly, I was getting so mad thinking that he didn't want to get better....that he was fine to sit in bed all day everyday and do nothing....when in fact, that wasn't the case at all.

Ova is a really hard worker, but this illness that he has obviously affects his ability to work.  He's been so blessed over the years to have landed such amazing jobs, but unfortunately none of them have worked out....because of his illness.  This last job that he had US Synthetic was so good to him and they worked with him more than any company ever would or should have.  They gave him time off when I was in the hospital before I had baby Katea, and when she was in the NICU they let him take time off when he needed to, like if she was having a bad day or something.  They worked with him when he first got sick.......but we knew it couldn't last forever.  How can a company keep an employee that can't work and has no timeframe of when he can work again?  We were expecting them to let him go, that would have only made sense.....but they kept working with him.  Finally on May 3rd, he got the call from them that they were really sorry, but they had to let him go.  I was devistated.  But I completely understood and was so grateful for how patient they had been and how much they had helped and cared about him.  Like I said before, he's a really hard woker, and they love his work ethic, so they told him that whenever he figures out what's wrong and he gets healthy again, that he can call them and if they had any open positions...they would try to help him out.  Such a great company.  Ova was our sole provider at that time.  I was still employeed with SkyWest, but I had been on leave for a year, ever since I was pregnant with baby Katea.  We were worried about how we were going to survive financially, but God is good and he always seems to know right when to throw a rainbow to us in the middle of a big huge storm.  My leave happened to be ending soon at SkyWest, and I was able to go back to work part-time to get somewhat of an income while I looked for a full-time job. 

Ova's doctor right now, Dr. Zachary is really good and he genuinely cares about Ova and our situation.  I don't know how many times I've called him stressed and worried about Ova and how much pain he's in...and asking what else we can do.  His nurse assisstants know me by name and they are always so concerned when I talk to them.  I've cried to them on the phone several times.  Even Ova notices the difference in how much they care.  The last time we went to see him, he did some pretty extensive testing....pretty much tested for every single thing that could be tested.  Everything looked ok.  His blood pressure was good, his chloresterol was good.....the only thing that was different was that his uric acid level was a tad bit higher than before at 8.7....but Dr. Zachary said it was probably because he hasn't moved for so long.  They drew blood and did x-rays and the whole 9 yards.....same thing we always do, but the feeling was different.  He wasn't checking to get us out of there quick like most of the other doctors we have seen before......he was being thorough because he actually cared and really wanted to figure it out and help.  It's really amazing how much his care and demeanor affected Ova and my attitude and perspective on our whole situation.  Gave us hope that he would keep pushing to figure it out.

Since all the tests came back normal, but the x-rays obviously showed arthritis....he suspected that Ova has RA, rheumatoid arthritis....but he can't diagnos it because he's not specialized in that field, so he referred us to a rheumatologist.  Since rheumatologists specialize in arthritis, they would be able to do more testing and really get down to the root cause of all his pain.  The waiting list to get in to a rheumatology specialist is ridiculous!  I called to schedule an appointment back in May and the earliest they could see him was in November.....I cried to them on the phone and explained my situation, but they just said "ma'am, everyone that needs to see us has to wait" so I begged her to please let me know if there were any cancellations at all that would move us up so we didn't have to wait 6 months to get seen.  A couple months after I scheduled the appointment, they actually called back and said they had a cancellation and could move us up to the end of September.  Even though it was still so far out, 4 months is way better than 6.

With the appointment scheduled, all we could do was wait and pray that his pain would lighten up.  Then we got hit with yet another curve ball.  Since Ova had lost his job, and our insurance was through his work.....we had no insurance.  I was working at Skywest, but they don't give insurance to part-timers.....so we had to do the only thing we could, we had to get him on medicaid.  I don't like to use government assistance, but I sure am grateful they are there to help when we absolutely need them.  I scheduled his appointment with the rheumatology specialist with the medicaid, since that was the only insurance he had.  Then I got a call from them the beginning of August saying that they apologize, but they no longer accept medicaid as an insurance and were going to have to cancel the appointment that we had been waiting for for so many months.  They said that medicaid hasn't been paying them, and the doctor was no longer going to accept them.  In that moment I think my heart broke and I felt overwhelmed and completely helpless.   I started calling around to other rheumatology specialists to see if I could set up an appointment with them, but nobody took medicad insurance.  Finally I called the medicaid office and asked them for names and numbers of rheumatoid specialists in Utah that accept medicaid.  NOT ONE.  All our hopes of finding out what was wrong with my husband were shot down in that moment...and there we were back at square one.  Now I needed to look even harder to find a job so I could get insurance for him, so I could get my husband back!

Needless to say, it's been a rough year.  If I sat and focused on all the trials we've been handed, I think I'd be depressed....but I can't.  I have to stay focused on the positives and all the blessings I have....I have to for my sanity and especially for my kids.  Ova is here, he's alive and we will figure it out.  Baby Katea is alive, strong and so amazing.  Makai, Filimone and Lautala are healthy, beautiful and smart.  I have a job and am able to work. We have a house, vehicles, food on the table.  Through it all, we are blessed.  And, just like they always say, after the trials come the blessings......it's so true with us!  After the trials, there are ALWAYS blessings.  Maybe the Lord is just testing us right now to see if we're able to stay strong and grateful through it all.....I don't know, but I do know that he must have something wonderful in store for us, and I can't wait to see what that is!  :)

3 comments:

Mua said...

You're awesome Mon! Keep staying strong and positive for your family, and everything will work out with Ova's situation. Good luck in the job hunt, I'm looking myself and just getting more and more stressed. Sorry to hear his appt got cancelled, I remember you telling me it was the end of this month you guys would be able to see a specialist, hopefully you'll find another doctor. We'll keep Ova in our prayers. Love you guys!

Melissa said...

Wow, Monica! I can't believe what has been going on. I am so sorry to hear about Ova and what is happeneing to him. So sorry about what it is doing to you too. You are one amazing woman!!! I will be down in S.L.C next week. Can I give you a call and come visit you? Take you out to lunch? Clean your house? Watch your kids so you can rest? Let me know! Sure love ya! Tell Ova hello and hang in there for us. We will be praying for you.
You are right, the Lord always knows what is best. The hardest part about that is that we don't see the outcomes and the blessings that are waiting to happen. Hang in there girl!

Kassie said...

You are so amazing.. all of you! Not a day goes by I dont think of your family and the strength you exonerate. You're an example in so many ways and I am so grateful that I have you as MY friend.. I love you dearly.. I'm a phone call away if you ever need ANYTHING!!!