Deployment Journal/Blog Week 52

Well, people…one year ago this week we had said goodbye to Earl for a year tour in Iraq. That journey is finally over, and I can honestly say I am a better person for having gone through it. I’m not naive enough to think he won’t deploy again, but having an idea of what to expect next time will hopefully make it easier.

I know I’ve been posting a lot of random things lately about my health, and so I thought I’d use this last journal entry to educate any of you who still may not be clear with what is going on with me.

Almost 8 weeks ago, I noticed my muscles were really sore and tight, like after a super-hard workout the previous day. Isaiah had been sick with an ear infection and I caught his cold, so the first two weeks, I attributed it to viral illness. We drove the 19 hours to San Diego as planned, and while I had difficulty getting dressed and washing my hair, I wasn’t overly concerned. We were in San Diego for two weeks, and I noticed my soreness was increasing and became more concerned. I went to the Naval Base ER and got on an antibiotic and felt hopeful for recovery.

I took an extra day driving home just to make sure I wasn’t overdoing it with my health, and the kids, dogs and I all arrived safely on Monday, July 12. All my body wanted me to do was rest and my muscle fatigue/weakness was definately worse. I could no longer squat down and tie my shoes, even sitting down and standing up were difficult. I wanted to have the house just perfect for when Earl returned, but I started to realize I had to let go of some of my control issues if I wasn’t going to lose my sanity. I begin giving the kids more chores around the house and resting on the couch a lot. I was able to unpack and then the girls did all the little cleaning jobs to make the house look nice for Earl.

The day after we returned from San Diego, I got into my primary care provider to tell him about my symptoms that had been getting worse over the previous 4 weeks. I saw him the next day and he ordered lab work and sent me on my way. 3 days later, they called me back in to say that my CK (Creatinine Kinase) was extremely elevated. This lab test shows muscle damage/inflammation and a normal result is less than 140. My result was over 9,000. He started me on Predisone immediately, which suppresses the immune system. He wanted to wait on another lab to see if I had certain antibodies that would indicate an actual autoimmune disease.

That next Monday, I called the office and they confirmed that there was an autoimmune disease process going on, and they would be referring me to a specialist. This is where the frustrating part began. Tricare needed to approve the specialist, and then after the approval, the Specialist scheduled me 4 weeks out to be seen. After several phone calls to my primary care provider, he spoke to the Specialist directly and I was scheduled to be seen the next day! Being your own advocate is CRUCIAL in healthcare…praise the Lord for my RN background and persistance! The other terrible thing about this Monday is that we took our little Princess in and her back injury was too far gone, so we had to have her put to sleep. Talk about crying!

I saw Dr. Titova on her lunch hour the following day and she is incredible. She told me that she thought I had polymyositis, but that it was extremely rare and they needed to definately pinpoint it down and that would require lots of diagnostic tests. She increased my Predisone dose because I was increasingly becoming weaker, not better. They drew 18 vials of blood (not kidding), took a urine sample, did hand and chest x-rays and scheduled 3 other procedures to be done in the next 5 days.

The first procedure was an eletrodiagnostic study which involved placing needles in my leg muscles and firing electricity into them to test response/damage. The doctor said that I was a 10/10 on the damage scale…one of the worst he’d seen. That was performed on Friday, July 30th. I was home over the weekend and continued on my Prednisone. That is a harsh drugs with many side-effects, the main one I’ve complained about is insomnia/restlessness. (You may have noticed it’s 0349 as I’m writing this-LOL).

Anyway, Monday, August 2nd, I went in for my MRI of my lower extremities, which took almost 3 hours to do. I dozed on and off the first 2 hours, but I almost had a panic attack the last hour. My butt and back were so sore! They did let me get up for one short break, but I NEVER want to to that again! Give me the needles in the legs, please!

Tuesday, the 3rd, I went it to see the surgeon about getting a deep tissue muscle biopsy, and thanks to a cancellation (totally God’s hand), I was scheduled the very next morning as his first surgery. They did put me to sleep and left a good 4 inch scar with 9 stitches for me to remember them by. Then, it was just waiting on all these results and hoping the prednisone would soon kick in and help with my muscle fatigue/function.

On Monday, August 9th, I went back to Dr. Titova (my rheumatologist) and she said the electrodiagnostic and MRI alone confirmed the Polymyositis and the biopsy would surely do the same. In my mind, I’m thinking,”Great, now I have this big scar on my thigh and it wasn’t REALLY necessary!” But my glass half-full husband said there’s other things they could find and it would help them with other people down the road, since it is such a rare disease. I love that man 🙂

My focus on Monday was “how handicapped am I going to get?” I already depend on Earl to dress and bathe me, and the kids have to pick up stuff I drop 10 times an hour! My doctor’s concern was short-term treatment. She said if we didn’t get my immune system stopped, it would start to attack the muscles affecting my major organs-particurlarly my lungs. So, I had to refocus on day by day treatment and living the best I can right now. That is also why I decided to cut my hair…I could no longer care for it because of my limited range of motion above my head.

Her aggressive treatment is as follows; 3 IV infusions of methylpredisone, which is a super kick-start to shutting down my immune system. I received my first infusion Wed. the 11th, and am going in today and tomorrow for another one-hour infusion. Next week, I’ll be getting a low-dose chemotherapy drug called Rituxan. I will receive it once a week for 4 weeks and my doctor is hoping I will see major improvement in muscle damage and functionality. It’s not actually approved for PM(that’s the cool lingo, now you know), but she gave an example of a 19 year old who couldn’t even feed himself, and after getting this drug, saw improvement the first week. She also told me to expect to be on Predisone pills for at least another 6 months. All of this is designed to “kill” my immune system, before it “kills” me.

If you’ve been following my status updates, you’ll know that I can’t sleep well. That has been a bonus in that I’ve gotten a lot of organizing done around the house, as long as I don’t have to reach up high or low! I had a major blow to my pride today when I took Isaiah to soccer camp and tried to climb the bleachers on my own. I fell really hard in front of all the parents, and because of my weak arms, I couldn’t get up. I was just laying there like a beached whale…very humiliating. The parents were all super nice, but I tried to explain what was wrong with me and just started crying. It’s hard, because I look normal on the outside, but feel like a bowl of Jello on the inside!

Earl has been INCREDIBLE!!! God’s timing and hand are in this all the way. If he were still deployed, I would be stressed trying to go to all these appointments, keep the kids fed and cared for…not to mention myself. We have such wonderful friends here and they have been helping us too.

I appreciate all your prayers, and I recognize so many of you are going through hardships of your own. We are growing so close to God through this, and I’m praying more for others than myself now. I would like to request special prayers for Earl and the kids. Coming home from war is an adjustment in itself, but to come home as a caretaker to a sick wife is an extra stressor for him. Also, I can tell the kids are confused about my illness. Here they’ve been without Daddy for a year, and now Mommy can’t pick them up or play with them(I am still reading books to them, so don’t worry).

I love you all and hope this is informative but not TMI…I know you all have lots going on and I don’t want to be self-centered. This is my life and I’m sharing it. 🙂 Have a wonderful week/weekend and send messages/call anytime. I’m trying to stay busy with stuff I can do easily, so if you see me pushing Scentsy products more, don’t get annoyed! I had been praying about going back to work as an RN when Earl returned, so this is a definate “no” from the Lord on that! I’m also going to stay as involved as I can with my PWOC Bible study group, and Earl and I are getting to know the people in our Sunday School class too.

Home: 253-964-2004
Kathy’s cell: 253-228-4145
Earl’s cell: 253-228-2315
Short hair again!My IV site in arm and my biopsy site on thigh. I know…I look like I was hit by a truck!

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    • This brought me to tears! I hate that you and your family are going through this, yet I marvel at your strength! Thank you for sharing your story, and I will keep praying for you and your family.

      August 12, 2010 at 6:38am · LikeUnlike
    • Stephanie Wilkinson Malon Wow, Kathy. I knew something painful was going on from your updates but I had no idea things were this serious! God always has perfect timing and we are all thankful that Earl came home exactly when you needed him. I just stopped and prayed for you and Earl and the kids. Praying for these meds to work! Thank you so much for the update, and of course, keep us posted.

      August 12, 2010 at 6:51am · LikeUnlike
    • Kathy, many prayers that this treatment plan works quickly for you and that it doesn’t have too many difficult side effects. I’m so glad that Earl is with you.

      August 12, 2010 at 6:53am · LikeUnlike
    • Joan Narron

      My darlin’ dear… you are a ray of sunshine that beacons the Hope we have in Christ. It is my earnest prayer that during this trial you and your family would be securely wrapped in the Loving arms of our Father. It is my prayer that it’s His will to heal you according to His plan and I look forward to the testimony that will further come from this. I am thankful for the love you have for your family and that you don’t give up. I pray that y’all are lifted up in grace and carried by love. See More

      August 12, 2010 at 7:08am · LikeUnlike · 1Loading…
    • Jenny Levart Hi Kathy! I’m praying for you and your family.

      August 12, 2010 at 7:19am · LikeUnlike
    • Christopher Wayne Sumpter Thanks for sharing your struggle. You will very much be in our prayers.

      August 12, 2010 at 7:23am · LikeUnlike
    • Susan J Bruce I am so sorry to hear about your illness, thanks for sharing, it helps me know how to pray. How did your body handle the Rituxan? Life is so unfair sometimes, I keep saying “Lord, help me to learn my lesson quick so I don’t have to go through this again!” Bless you all!

      August 12, 2010 at 7:42am · LikeUnlike
    • Sharon Knierim Rotz

      My dear Kathy……I am soooo sorry for what you are going through!!! I know this is a great time of learning to rely on others and God. Isn’t it funny how we can be so well one day and fall apart the next? I know you are strong and are learning a new level of trust in our awesome God. He will take care of us!!!! Of that I am sure! Ed and I are praying for you often……we know somewhat what you are going through because of Kayla…..she didn’t have the debility you have, but the extreme pain and throwing up all the time (poop)! I am so thankful you had the RN background so you could push for your care. You really do need that now days.May God hold you in His arms and may you relax and let Him care for you like he does the birds of the air and the flowers of the field!!! I love you! How long do you have to take the chemo meds? Can this be cured, or do you live with it? See More

      August 12, 2010 at 7:55am · LikeUnlike
    • Erin Moore Praying for you and your family.

      August 12, 2010 at 8:12am · LikeUnlike
    • Tawnya Carter Conway Hang in there Kathy! My thoughts and prayers are with you and your family. I hope you start seeing some improvement over the next couple of weeks as this has got to be so tough on you. You are such a strong, positive woman…..I know you will get through this. Thinking of you……

      August 12, 2010 at 8:20am · LikeUnlike
    • Netra Williams It IS the will of God to heal. I know-he did it for me. Trust and believe that healing is for you-even when you are not able to see it–It is possible. Find healing scriptures and say them daily. I am believing that you will be made well.

      August 12, 2010 at 9:26am · LikeUnlike
    • Doris Quigley This definitely helps me to understand better what is going on but also brings tears to my eyes to realize what you are going through. Prayers will be lifted daily for you and your family.

      August 12, 2010 at 10:04am · LikeUnlike
    • Katie Donnelly Dunn Wow, Kathy, I don’t know what to say…my heart just breaks for you! I had no idea that it was this bad! I soo wish we lived closer so I could give you a big hug and help you out with things. Since we don’t I guess a virtual hug will have to do {HUGS}!! I will be praying that you start feeling better real soon!!

      August 12, 2010 at 2:05pm · LikeUnlike
    • Marcy Simons You really do have such a great spirit. In just the short time I have known you, your attitude has been such a blessing to me. I stay at home with the kids, so if you ever need anything, just give me a call and let me know.

      August 12, 2010 at 4:31pm · LikeUnlike
    • Cindy Reinholt Love you Kathy. thanks for sharing. so sorry about your illness. so very glad that Earl is there for you and the kids. Keep trusting the Father. He will be there for you through it all. we’ll be praying you!

      August 12, 2010 at 4:56pm · LikeUnlike
    • Ed Rotz I’m bummed! Your PM diagnosis surely has turned your life upside-down. In spite of your challenges, you are one tough, spunky, courageous young lady. Your sense of humor is refreshing as is your basic attitude about the junk that has infiltrated your body. Would love to see you, Earl and your kids again someday. Be assured of our continued thoughts and prayers….

      August 12, 2010 at 5:28pm · LikeUnlike
    • Kathy, I just read your blog. I’m so sorry to hear about all the pain your in. I’ll have to Google PM. It sounds so painful, but you have such a positive outlook. You’re such a strong person! Miss you! And I’m glad Earl’s back!!!

      August 12, 2010 at 6:32pm · LikeUnlike
    • Kayla Matos

      I love you, Kathy.

      I hope you know that I have a pretty good idea of what you are going through from standing up for yourself in the medical world, to tests being given, to surgeries, to the medical world being tough to work with, to getting iv infusions. If you need someone to talk to, pick up the phone and call me! I will do the same. Having support out there from people who “get it” is so nice. I am praying for you and Earl and the kiddos. So glad Earl is home to help you out.See More

      August 12, 2010 at 7:09pm · LikeUnlike
    • Barbara Meurer Van Horne

      Well Kathy, you just finished one of the toughest years you’ve had to face only to have a new trial, not just for you, but for the family. Stay positive and let the prayers and meds work their wonders. I know you and your family will do well. I have a favorite mantra I borrowed from a favorite saint that endured much suffering…it is ‘Jesus, I Trust in You!’ I know your faith is strong and that you know that you are NEVER given more than you can endure…Jesus, I Trust in You!See More

      August 12, 2010 at 8:12pm · LikeUnlike
    • Kathy- you, Earl, and the kids are in my prayers. Be as strong as I know you are. Take care!!!!!

      August 12, 2010 at 8:49pm · LikeUnlike
    • Brent Bestwick Kathy & Earl – the Bestwick’s are right there with you guys in spirit; wish we could be there in person! All these worldly cares are so temporary; sometimes God reminds us clearly of our eternal lives by showing us that our earthly lives are nothing permanent. This will be one of those chapters that you and the kids will talk about being in the past and learning so much from.

      August 12, 2010 at 9:13pm · LikeUnlike
    • Brent Bestwick ‎…and by the way…I firmly believe that God FREQUENTLY gives us MORE than we can handle, so we’ll have no choice but to lean on Him and get that much closer to Him, eventually understanding that it’s really all about doing things His way and in His strength.

      August 12, 2010 at 9:16pm · LikeUnlike
    • Shamira L. Blockmon I wub my Mrs Kathy 🙂 I am so happy that Earl is home and now we can run (well not literally run more like stroll) the streets together lol. I pray every night that you get better and remember what dont kill you only makes you stronger. I will always be here for you if you need ANYTHING.

      August 13, 2010 at 4:28pm · LikeUnlike
    • Praying God would be your strength.

      August 13, 2010 at 5:59pm · LikeUnlike
    • Julia E. Clay-Hamm you all are constantly in our prayers!

      August 13, 2010 at 10:49pm · LikeUnlike
    • Kathy, You are in my prayers.

      August 16, 2010 at 1:37am · LikeUnlike
    • Lindsay Heard I had no idea what you’ve been battling, but I know if anyone can remain reslient in God’s strength, leaning wholly on Him, I know you guys can. Brent is right….He’s rendered you dependent on Him and will show you His glory no matter how He chooses to manifest that. Man I want to hug you (but not too hard!) We are and will be in prayer for your family. Much love, girl.

      August 17, 2010 at 10:39pm via mobile · LikeUnlike
    • Kathy James Morris I love you all so much and am encouraged as I read your comments. I know with family, friends and God, I can make it through this, and still be my crazy self.

      August 17, 2010 at 11:02pm · LikeUnlike
    • Allie Caton Bestwick

      kathy, i read this and am so sorry i didn’t respond right away. i’ll probably just ditto what everyone else has said, but really and truly, WOWIE GIRLFRIEND! ;O so sorry this is happening but was ABSOLUTELY BLOWN AWAY BY YOUR FAITH RESPONSE. wish i could say i’ve responded likewise in life altering situations. i was encouraged and humbled all in the same moment. you and your fam have been so much fun and such a blessing to us. i love our hp chats and expect many, many more in future so keep on kicking this thing so we can get back to hp girlie!!!! q is here squirming on my lap so typing this is extremely difficult. i’ll msg more later! LOVE YOU LOTS AND LOTS AND BUNCHES AND BUNCHES FOREVER!!!!! 🙂See More

      August 18, 2010 at 9:13am · LikeUnlike
    • Gwen Lee Praying praying and more praying. I am suprised I did not see this sooner. So sorry girl. So how are you today?

      August 18, 2010 at 1:17pm · LikeUnlike

    • Finally read all of your blog. I’m so proud of you. You are an amazing woman of God. So many have commented how I feel for you that I don’t want to sound trite or redundant. I just love you so much, Kathy Morris. I’m praying and believing that our God—the master of Heaven and Earth—will touch you and heal you. I’m praying for Earl and the Kids too. That a peace and trust in God will settle over them and bind you all together. Just know the McCowns love you so so very much.See More

      August 18, 2010 at 10:27pm · LikeUnlike
    • Kathy James Morris

      Today has been difficult because my muscle pain is WAY worse after the chemo. I’ve had zero nausea, but I guess the chemo is attacking my immune system at the source-because I hurt more all over than before. Anyway, we had dinner from a friend again and I took a long nap and am taking it easy on the couch. We had a talk with the kids tonight about trusting in God and growing closer to Him and each other through this. Please pray especially for Hannah…she hasn’t been around me for the last two weeks that I’ve gotten so bad, and she’s crying a lot to see me like this. I pray the Lord grows her faith and she isn’t seized by fear or anger. I love you all and appreciate each of you in my life!See More

      August 18, 2010 at 11:27pm · LikeUnlike
    • Sarah Ellsworth Sutterby Kathy, I can only imagine what you must be thinking or going through! As a nurse we often “know too much” and that makes it hard to be the patient! I am so amazed at your amazing faith in our Lord Jesus Christ! Someday you will understand why he put your family through this long painful trial! I love you and miss you! Be strong Kathy! God Bless!

      August 19, 2010 at 1:50pm · LikeUnlike
    • Sharon Myers

      Thanks Kathy for sharing your story and know that I am praying for you. Your husband is loving you as Christ loved the church and gave up himself for her. I thank God for the wisdom of the Dr. and for you sweet sister. I love how vulnerable you are and how open and free you are. Our Saviour feels your pain, sorrow, and deepest need. He never allows anything in our life that He knows we can not handle. Please let me help in any way that I can. Love you deeply in Christ. Sharon See More

      August 22, 2010 at 10:29pm · LikeUnlike
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