Posts Tagged ‘PsA’

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Where Have I Been?

September 27, 2015

What a loaded question! I’m sorry I neglected this little project of mine and I think maybe the time has come to get back to this. I felt the kick in the pants from Callie’s Mariner when she featured me as a part of a growing merchant marine blogging world in her Sept. 21st post “Shipmasters”. So if you have journeyed here from her page, let me say “Welcome!” If you’ve been a long time visitor and you just got notice that I’ve posted something, let me say “Thank you for returning!”

I did post earlier this year that I had a tonsillectomy and septoplasty back in March. What I haven’t posted is that on April 11 I ruptured L4/L5 and I underwent a discectomy, laminectomy, and spinal decompression on June 22nd. The Chief was home in March for that surgery and the trip to the ER. He returned to work the day after his brother’s wedding. He wasn’t home for the MRI or the surgeon consult. I had asked if we could wait until the Chief was home for the surgery but that was out of the question. I was allowed to complete my obligation for a long term sub job and given one week to get everything squared away. The hardest part of that experience was the helplessness I felt when the Chief had to tell me that his emergency back-up plan fell through.

Let me be perfectly clear, if an emergency occurred the Chief would have left the ship by any means possible even if he didn’t have a relief on board. I have no doubt in my mind of that. It helped that for 48 hours he was actually in port.

It is just that I know he felt a bit peeved and frustrated with the situation and I felt a bit miffed at the mother and MIL actually getting in a tiff about who would have more time with my children. T1, whether she was just parroting me or actually felt as strongly, was a bit put off by the whole situation as well–considering she really didn’t need a babysitter. I even had to ask my new sister-in-law if she would come to the hospital to help me so that my father didn’t have to (love the man but he is not the one I wanted helping me to the bathroom … I can at least joke that I’ve unintentionally mooned my new SIL).

I healed remarkably well. Because my body had been under assault for months, I have a very painful flare up of my psoritatic arthritis (PsA) and had to stop the heavy duty drugs 5 days post-op so I could at least take my Enbrel shot. I would have to wait until my doctor cleared me (and removed my stitches) before I could start the Methotrexate (MTX) again. I have been cleared to run and weigh lift again. My surgeon had to remind me that unlike his regular patients who are still sitting on the couch and taking Percocet I am going to feel more aches and pains because I AM working out, running, and challenging my muscles and nerves to work and heal. I take 800 mg Ibuprofen when things are inflamed and a muscle relaxant when desperate. I have managed a 11:30 minute mile already… next goal is to work on the second mile.

Emotionally there have been other events that have occurred in the past 10 months that I am not at liberty to post about. Those things and not having this blog as the outlet it had served as in the past made letting blogging go for a while a necessity … plus laying flat on your back and not wanting to blog using my smart phone kept me away too.

Besides Callie’s gracious mention, I also think it will be important to blog about this time in our lives. The Chief will have 25 years with his company in the spring of 2016. I’m in such denial that I added a year! (“What? No! You don’t have 25 years until 2017!”) We had made an agreement that he would try to make it to 25 years if I seriously looked for employment by then–my mother did not work a steady 9-5 job until my freshman year and I wanted to give that to T2 as well.  Right now the Chief threatens to quit (rightly so) every other day. I was called in the second week of school to do a sub job for the assistant librarian (the same one I subbed for just before my tonsillectomy). I am hoping that if she considers retiring at the end of this school year that I can apply for (and get) her job. And that thought rocks my world sometimes–full-time work for the first time in more than 15 years!

This transition time in our lives will be crucial. Many career military marriages fall apart upon retirement. The Chief and I have fabulous examples in our parents (51 years and 48 years respectively) and we have worked hard ourselves to avoid many common pitfalls. I can honestly say the Chief and I are much stronger than we were a few years ago. I will have to blog separately about some lessons learned but if you haven’t read The 5 Love Languages you really need to–it was eye-opening! Understanding the Chief’s love language during the past 6 months made me fall even more romantically in love with him after 20+ years!

So Welcome and Thank You! Here’s to a new and continuing journey!

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E.o.t.T.: This… and Fail

December 14, 2014

“It is funny how when you have autoimmune diseases your normal is the equivalent of someone else’s awful. Which is okay because they shouldn’t have to feel the pain we do or understand it. We wouldn’t wish this pain on anybody.”

Exactly. This. But like my rheumatologist said, “The good thing about running in the cold is that everyone’s joints will ache and you can tell them that this is what you run with every day!”

So I ran a 5K Jingle Bell Run for Arthritis this morning and what a fail.

Let me back up. I had my personal best time at the 5K I ran for Making Strides Against Breast Cancer. Thought things would just transition right to training for the next race in 8 weeks. Didn’t exactly happen that way. We lost time for one thing or another. Oh, yeah, two incidences of tonsillitis in the month of November. Now I remember.

I remember the first time I tried running a 5K with the Chief walking Crook and Heddie and meeting me back at the car. Not bueno. 35:27 or something like that. 3 minutes slower than my new record. And … I had to walk some. Ugh.

About 10 days ago I developed intense pain in my left hand. Gripping the steering wheel or the bar at the gym made me want to jump out of my skin. And the residual burning pain… for the birds! I knew it wasn’t the bone so I also knew if I went to a clinic and they saw nothing on x-rays, I would be going to an orthopedist anyway. I just went right to the ortho. And yup, bones looked great. “Are you sure it is not numb or tingling?” “Yup. No tingling. Pain and burning.” So the PA went out to consult with the doctor. “She’s describing… Is it possible?….” then loudly from the doctor, “I don’t see why not. It’s entirely possible.”

“So, anatomically hands and feet are the same. Have you ever heard of a neuroma?” I had. My mother had them. In her feet. We’re talking about my hand. “What you’re describing is like that and I checked with Doctor So-and-so to see if he agreed and it is entirely possible that you have a neuroma in your hand.”

Seriously? Can I be any more of a medical freak?

6 days of prednisone to see if we couldn’t get the inflammation under control and no heavy lifting for 1 to 2 weeks. Oh, and don’t make a fist when running (my middle finger presses right on the spot when I make a fist). At first I wasn’t going to take the steroids because I really didn’t have a lot of pain at the appointment. The following morning I was driving the girls to school because I was subbing and I just barely touched the steering wheel and @#$%^&.

T1: Hey, Mom. Don’t use that hand in school. You might say something.

T2: Yeah. You might embarrass me.

Me: Thanks for your concern. Feeling the love.

I took the meds as soon as I got home from the job.

6 days seemed to only barely take the edge off. Of course I still tried benching (less weight though). I thought I’d feel like Wonder Woman like I did back when I took a short course of prednisone when we didn’t know I had PsA. Nope. I was so messed up and exhausted. Not a good week. I did manage to get in a full 5K but I didn’t time it to see where I was at–I was just wanting to get a full 5K in a week before the race. My sprints weren’t bad but I was running into the wind.

The pain is gradually becoming less and less so hopefully I can avoid a cortisone shot. Just the thought of that sends me into an anxiety attack.

Back to the race. I partied the day before. Sodas, caffeine, cookies, whoopie pies, chicken salad, etc. When we came home, I was a little hungry but didn’t eat anything. I couldn’t unwind at all and tossed and turned and finally took a third of a sleeping pill. 7 a.m. came way too early. Should have known when the cold wasn’t making me do the pee-pee dance that I was dehydrated. By mile 1 I was feeling queasy. My blood sugar was dropping fast. I needed more protein last night and perhaps this morning. After the race I was shaking for quite a while as I waiting for the watered down hot chocolate and the delicious scone the Chief and the girls brought me to take effect. Even later at church a friend remarked that I looked pale and puny.

The only thing in my defense is that for an arthritis run, there were way too many hills and there is a feeling amongst even the fastest runners the course was a bit longer than a 5K. I was psyched out by the course–I wish I had been mentally prepared. I couldn’t help it. I had to walk and that is the kiss of death because it hurts so much more to start back up. Everyone is congratulating me for finishing but it doesn’t feel like finishing if I had to walk portions.

Worst time results ever. 😦

P.S. Due to the tonsillitis, I am looking forward to possibly having a tonsillectomy and adenoidectomy. Yeah me.

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Musings of my Blog-iversary

December 9, 2014

So 11 days ago WordPress kindly reminded me that I have been masquerading as Snipe Wife for 4 years now. Wow. Hard to believe. I also now have 200+ followers. If you’ve read my blog long enough you know how I feel about at least 50 of those being robots or people who just want to hawk their own websites and having nothing to do with merchant marine affairs or anything else I post about. Really, WordPress, why can’t I click “delete” on some of these pointless follows? But 200 followers in 4 years is not bad for being an anonymous blog.

I had started the blog with much trepidation but with amazing support from a fellow blogger. I spent the month posting on FaceBook my 30 days of thanks and posted them on Dec. 1st. I honestly don’t know which FB friend started that but for 4 years now I have continued the tradition.

Four years ago I suffered probably the second most traumatizing event in my life. If you read the last few entries on that list, I described a desperation and despondency; anxiety that would spiral out of control; a pain that would stick with me for years. The purpose of the list is to count your blessings. I don’t post on FB “If you love Jesus, you’ll repost this” pithy sayings and “challenges” … instead I was trying to list what I was more than grateful for, knowing the source of all the blessings in my life. My intent was to never stand before anyone and say “Thank God I’m not like that tax collector; look at what I do” (Luke 18:9-14). My intent was not to make anyone else feel bad they didn’t have fabulous baby sitters to make their lives easier or to criticize anyone else’s husbands who can’t stand in the Chief’s amazing shadow. But my attempt to just show, rather than “repost”, my gratitude was twisted in the brutal attack.

The following years I debated even doing the list but I felt it was important to write these blessings down, to show my children later so that they too could appreciate all that we have been blessed with to cultivate giving hearts in them. I would struggle and lose steam as the month wore on and I got closer to the anniversary of that trauma. I questioned whether posting such a list was vain and pithy and whether it made others uncomfortable. And yet as I read the daily posts of other friends who joined in, I never saw the same flaws in their lists. I was encouraged and uplifted by their thoughtful lists. I was much harder on myself.

Interesting that I saw a lot of 3-day and 7-day thanks challenges starting in the fall this year. I did not participate because I was going to make my 30 Days of Thanks again this year. And it was going to be different. I was going to truly focus of finding something that day that I was thankful for. I would make it less of a laundry list. Yes, I always started off with giving credit where credit was due–that wouldn’t change. But if I was thankful for a rainy day then I would thank God for that rain. Yes, I’m still thankful for my fabulous friends and babysitters and I can’t live without them but I was focusing on the little things, the things we really take for granted.

I didn’t necessarily post every day; instead toward the end of the month I posted every couple of days. Not because I lost steam or had doubts… I just wanted to think about the thing I was most thankful for.

I didn’t lose steam because I didn’t hear those brutal words anymore. There was a fundamental shift in letting it go. Letting go and trusting in healing God provided me. It wasn’t over night but it was so much better than the two years of pain that left me with generalized anxiety and the onset of psoriatic arthritis. The healing continued to evolve and my trust in God has grown.

I’ve even told total strangers on the merchant mariner wives FB that I write this blog. I haven’t given up on this blog, I just write when the mood strikes me. I’m less self-conscious about it … even coming to terms with creating boundaries with the Chief about his input. Four years… lots to be grateful for, lots of lessons learned. Lots of healing.

To my 200+ followers, real or not, thank you for sticking with me on this journey.

 

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Thankfulness 2014 Week 1

November 11, 2014

Nov. 1 Today I am thankful for God who deserves all the glory and praise. I am nothing without HIM and I need to trust and rely on Him more. I am grateful He uses even my flaws and mistakes to better me or to make a difference in this world. I am thankful He has given me another day.
FB on my phone ate my status…

Nov. 2 I am thankful for this Lord’s Day. I was so happy to be back to my young ladies class and my co-teacher Heather M. I learn so much from them and today was all about growing in knowledge of God. The aches were catching up to me but I am thankful for this day of worship and rest.

Nov. 3 I am thankful for the husband I was blessed to find 21 years ago. The love and devotion he has shown me and the girls and all the sacrifices he makes cannot not be adequately described. This past week he has risen to all occasions even while sick to make sure everything for our family went smoothly while I worked and ran an event. I could not have done it without him. He is my best friend and partner, chief engineer and head of family. His generosity astounds me and we are instilling that in our children (even if they act spoiled!) I thank God for the Chief every day.

Nov. 4 I usually do these in a particular order but because today is the birthday of a wonderful friend, today I am thankful for the friends in my life who have been my rocks, my sounding boards, my champions, my confidants, my sanity, my hilarity, my partners in crime. As an introvert you are few and far between and to the ones who have been here the longest–I am in debt to you (you know who you are–especially the birthday girl!) I know often I get the better end of this deal but please know that I am so thankful for you, besties, and you make the world a better and brighter place.

Nov. 5 I am thankful for the blessing in my life that is my Bright Light. What an amazing young woman she is becoming. The journey that we have shared in the last year alone has been a privilege and wonder to take with her, bringing us closer even as she becomes more independent and sure of herself, learning some tough lessons and staying true. She is rising to the potential both D and I have always seen in her and couldn’t be more hopeful for her bright future. She didn’t come with an instruction manual but I learn from her all the time and I am humbled. What a gift from God.

Nov. 6 I am thankful for the Happy Girl in my life. From the beginning she made sure to let us know she was going to do things in her own unique and creative way, not sitting in anyone’s shadow and daring anyone to try to ignor her. She is truly a funny little person and makes me laugh often. She is coming into her own, even if doing with a bit more attitude and moodiness than her usual happy self, and watching her grow is a joy. And from the beginning that joy she freely shares has been such a gift from God in times of need. My joy and my comfort… 🙂

Nov. 7 I guess what I said in my share post yesterday was my thankful thought… I am thankful for the advances in medicine that came up with biologics. Aches and creaky joints mean I am still here for one more day but I don’t have to live those days in crippling pain. I get to be here and not only watch my children grow but be part of their lives. Since my diagnosis my fabulous trainer has kept me going and I’ve done more than I thought I could … getting ready for my 5th 5 K in December (and I hate running!) Yes I desire a permanent cure but I am thankful for the “thorn” of this illness too. It brought me to my knees and when I finally learned to trust God he gave me the spiritual healing I needed.

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