Tag Archives: doctors

Gratitude Heals

Life has been a whirlwind this past week. After a holiday weekend spent working on projects and playing games with a good friend, our lives were upturned when my fiance’s father was hospitalized Tuesday.

Pops is still in the hospital today, and likely will be for at least another week, though we don’t know for sure yet. So while I wait for a call back from his doctor, I’ll share my gratitudes here, and send some positive energy into the universe on his behalf.

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*I’m grateful for friends, framily, and loved ones who have been sending prayers and good thoughts for Scotty’s dad.

*I’m grateful for the nurses and staff who have been taking such good care of Pops, and who have answered all our worried calls with calm reassurances.

*I’m grateful for a dear friend who’s come back into our lives, who has been my strength this last week. I’m thankful she was able to spend Saturday with us, and provide some smiles when we needed them the most.

*I’m grateful for our doggy and his snuggles. They might not cure what ails us, but they come pretty darn close.

*I’m grateful for an afternoon at the dog park, watching our doggy play and run. That little bit of fresh air cleared our minds and temporarily eased our hearts. It’s the simple things, sometimes.

*I’m grateful for the Dutch Bros. gift card we received for Christmas which means we’ve been able to treat ourselves to hot tea and coffee while we’ve been driving back and forth from the hospital. The little pick-me-ups have been heavenly.

*I’m grateful for the long-burning holiday candle Cathy gave us for Christmas. The scents of cinnamon and pine are extremely soothing while I sit and wait for the phone to ring.

*I’m grateful we were able to make changes to our phone plans last month, so that we now have the unlimited minutes and texts for all the necessary phone calls and messages. We’d make the calls anyway, but it’s nice to know our bill won’t be astronomical when it comes.

*I’m grateful our car has been able to make the repeated trips to the hospital (it’s a 40 minute trip to where Pops is), despite it desperately needing an oil change and transmission flush, which we can’t exactly afford right now. I’m also thankful for lower gas prices which make it not so damaging to the budget to have to fill up the tank over and over again this month.

*I’m grateful for Scotty’s boss, who understands family comes first. Who made sure Scotty had time off to be at the hospital while Pops was admitted, and even paid him for those hours.

*I’m grateful for all the compassion, love, and strength we’ve received from friends far and wide. For the phone calls, text messages, emails, and tweets. For the smiles and hugs. For the prayers that keep coming, and all the positive energy that is flowing from everyone. It is all felt, and very much appreciated.

*And I’m grateful for my own treatment and doctors, who’ve made it possible for me to be able to be by Scotty’s side through all this. I’m grateful my body has cooperated this past week, and hasn’t punished me too badly for the excess stress and worry. I’m grateful that tomorrow is infusion day, and that I will be receiving some blessed relief so that I can continue to stand by his side and be strong for him.

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There’s Always One More Thing

It would appear I’ve picked up yet another cold.

Like I needed another thing on my plate.

This past month has seemed like one thing after another. I’ve done my best to stay positive and just keep rolling with it, but at some point, we all break. I’ve kept much of what’s going on quiet for two main reasons. One- we still have more questions than answers. Two- I really didn’t want to be a downer. I wanted this holiday season to be filled with light and joy. And so I just kept plugging away, decorating our home and making plans.

Then this cold came.

I woke up Saturday feeling mostly fine. I had a little stuffiness but figured it was due to the dry air, as it’s been cold and we’ve had the heat turned up. I went with Scotty to visit his dad that afternoon, and then went out that night to watch Scotty play. By the end of the night, I was sneezing away and felt like my head wanted to explode. Last night, I knew it wasn’t just allergies or dry air, I could hear the cough rattling in my chest.

And that’s when I wanted to break down. Because I’m tired of being sick. I’m tired of cancelling plans and having to reschedule and back out of promises. I’m tired of doctor appointments and tests and more medicine. I’m pissed that once again I have to push back my Remicade infusion, leaving my body open to further pain and complications.

Because it isn’t just about the cold.

It’s the TMJ diagnosis and finding out there’s joint erosion in my jaw. That I may need surgery on my mouth. That there are days where talking is painful. It’s the bouts of temporary paralysis while dreaming and/or waking up that terrify me. It’s the overwhelming signs pointing that stress is taking its toll on me, and the overwhelming amounts of stress that keep pouring in. It’s the nerve pain that shoots down my legs.  It’s the sleeping problems, the headaches, the soft food only diet, and oh-look-mother-nature-decided-to-visit-this-week-as-well.

It’s the feeling that it’s always ONE MORE THING with me.

It’s the worry I see on my fiance’s face, even as he’s trying to be so strong for me.

Today I go in for an MRI of my brain and I’m waiting to hear back on when I can get scheduled for the EEG the doctor ordered. I’ve cleared my calendar for the week and am bundled up with hot tea, Mucinex, tissues, my heating pad, and Austin Powers. I’m doing the best I can to practice self-care, while working to let go of the negative and focus on the happy.

I appreciate all of your comments, love, and support. I will do my best to keep writing and sharing my path. But if I miss a day here and there, or don’t get to my email right away, know that I’m taking care of me- one thing at a time.

 

I’m Grateful For You

It’s a chilly morning here in the PACNW and I couldn’t be happier. Fall is swirling outside my windows with the howling wind and occasional downpours. I’m bundled up in cozy jammies, slippers, and a fuzzy blanket. My days are now filled with cups of hot tea and apple cider. And gratitude. Always gratitude.

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*I’m grateful Scotty has an understanding and emphatic employer. It’s rare these days to find someone who understands that while work is important, family comes first.

*I’m grateful for framily who visits with a gorgeous, air purifying plant to decorate my home and help me breathe better. A fellow spoonie who constantly goes out of her way to make my life better.

*I’m grateful for blogger friends who help me navigate this world as I continue to expand my horizons. Friends who answer texts, even while out celebrating. Friends who answer the call of “HALP! I don’t know what I’m doing!” with a laugh of understanding.

*I’m grateful for a partner who does the little things. The ones he thinks don’t matter, but they all add up to make my days so much smoother and easier. He makes the role of caregiver look easy, though we all know it is not.

*I’m grateful for a kiddo who is honest and upfront with us, even when he’s broken something he knows we can’t afford to replace. He is not in trouble because he came to us and told us what happened instead of trying to hide it, and he is already working on a solution.

*I’m grateful for a doctor who understands my life in pain, and never doubts me. He helps me manage those pain levels without judgement. He never questions me when I tell him I hurt, he just works with me to find me the best comfort available. His staff are all equally caring, and it makes it easy to turn to them for help.

*I’m grateful for framily who send me tools to help me on this journey with chronic illness. And chocolate, because obviously. For cookbooks and letters that make me smile. For notes and lists of treatment options. For a little something that touches the heart and lets me know you thought of me while you were continents away.

*I’m grateful for gift cards and the little I earn from various rewards sites that allows us to keep our heads above water.

*I’m grateful for understanding friends who don’t hold things against me, even when I hold them against myself. Especially then. For friends who know I haven’t forgotten about them, even if it appears I’ve fallen off the map.

*I’m grateful for all of you. All who read my words and offer encouragement and support. All who pass my words on to others. Each of you gives me the purpose to get up each morning and pour my heart out for the world. You give me strength to reach a little further, and share my words among other avenues.

I’m Grateful For Negativity

When I woke up this morning, I wasn’t feeling very grateful.

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I’m currently fighting off a nasty sinus infection that resulted from the chemical poisoning a few weeks back. The antibiotics are wreaking havoc on my body, and we had to push back my next infusion, so I’m flaring on top of everything. Clearly, I’m loving life right now.

But then something on Facebook stopped me in my whiny tracks. And I realized something very powerful.

I’m grateful for all the nay-sayers. For everyone who’s ever told me I couldn’t do something. For all the people that told I’m not strong enough, or pretty enough, or thin enough, or just…ENOUGH.

For the doctors who told me it was all in my head, and the ones who told me I’d succumb to this disease and be in a wheelchair by now. For the nurses who were rude and treated me like a hassle.

For the “friends” who left when things got rough, and the people who never gave me a chance.

I’m grateful for all of this negativity, because I chose to thrive in spite of it all.

I am doing it. I’m living. I’m writing. I’m DOING. I’m strong, and pretty, and my man happens to like my curves, so there! I am more than enough.

It’s not all in my head, and I haven’t allowed RA to overtake me. While I might need a cane sometimes, I’m not in a wheelchair yet, and I have no plans for one.

And those friends who left? They made room for the people I really needed in my life. They opened the doors for my framily to walk through, and so I’m grateful for them.

I’m grateful for everyone, everything, that has made my life challenging. Because it all has made me who I am. And who I am is someone who’s not giving up.

Ten Things For Which I’m Thankful

Yet another prompt from the SITS Girls, and it couldn’t have come at a better time.

Yesterday we were jarred awake at 2:30 am by a very loud boom and the deafening silence that said our power was out. Though we were able to go back to sleep, the power was still not back when it was time for Scotty to get ready for work, so he got to shower in the dark. The power finally came back to life right before 11:00 am, right around the time I was starting to panic about the food in my freezer and refrigerator.

Anyway, I told you all that to tell you this: You don’t realize how much you rely on things and/or take them for granted until they aren’t there anymore. So here are some things I’m trying not to take for granted today:

*Electricity. The microwave and toaster and TV and my laptop and the router which allows me to have WiFi for my phone. These modern conveniences are vital in my life, and I find I go just a little bit crazier without access to them.

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*Scotty. That man loves me when I’m crazy, when I’m sick and whiny, or when I’m panicky and hysterical over silly things. He calms me down, listens to me rant, and provides chocolate when all else fails. He is my rock, my safe harbor, and I would be truly lost without him.

*Fall. I’m so happy fall has decided to come to my little neck of the woods. Gone are the 90 degree days, and here are days of drizzly rain and cool winds. Now is the time for hot tea and apple cider, oatmeal for breakfast, and soups in the crockpot. This is my time.

My Girls

*Framily. Otherwise known as friends who are more like family. Nolan and Court. Tracie and her family. Teala. Natalie. Cindy-Lou. Fallah. Kerry. Cathy. Cathi. Rene. Rob. Shevaun and her family. Joules. Dawnie. Kristen and Seth. Amanda and John. These people lift me up and inspire me daily.

*My Doctors. And their staff. A medical community that genuinely cares about me. They call to check on how I’m feeling, and answer my litany of questions without any frustration. They help me to live the best life with chronic illness, and that’s no easy feat.

*Blogger Gals. The ladies from Ask Away Friday who have become friends, mentors, and bringers of inspiration. Bloggers I’ve known/followed for a while now who continue to make me want to be a better writer. Please check out the Blogroll in the sidebar to send these lovely peeps some smiles.

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*Jojo. The light of my life. My legacy. His text messages keep him here with me, even while he’s miles away plowing his way through middle school. The fact that he wants to play Fantasy Football with Scotty and I. All the little ways he tells me he loves me, and loves Scotty. His smile which will warm my heart always.

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*Toddy. Our adorable little doggy who loves me to pieces. His tail wags, snuggles, and kisses never cease to make me grin. When he senses I’m not feeling well and cuddles at my feet, like he’s guarding me from the yucky RA monsters. The way he snuffles and barks in his sleep as he dreams of…whatever doggies dream. The little dance he does when we ask if he wants to go for a ride in the car. The sheer JOY on his face when we take him for rides. He is a light in every single day.

*Music. Our extensive music library. The ability to stream music via my phone. That I can sit here and sing along as the words flow. New artists, old favorites, it all blends together to soothe me and encourage me. I close my eyes and let the melodies and lyrics carry me away to a place where the pain can’t quite reach me.

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My beautiful Oregon Coast. This was taken by me, about this time last year.

*Beautiful Photos. Instagram, Tamara’s blog, Facebook. The faces looking back at me from the frames on my wall. They keep loved ones near, show me places I can only dream about visiting, allow me to live vicariously through my friends, and show me glimpses of your lives. They capture memories and inspire me to remember the good, each and every day.

 

What are YOU thankful for today?

Truthful Tuesday: I Have Hope Again

I have a million and one things on my to-do list today, so here’s a few truths to carry you over until I can fill you in with a proper update:

*I had a fantastic appointment with my new rheumatologist. She has a game plan for getting my body back on track and helping me live the best life possible with RA.

*My new doctor does NOT believe that RA has attacked my spine but has ordered Xrays to be certain…and to also find out for sure what is causing the lower back/hip pain.

*I am blessed to have a partner who is incredibly supportive, who holds my hand through this up and down life with chronic illness.

*I met a new friend on Sunday and I think we really hit it off. I’m excited at the possibility of expanding my social circle and trying new things. I’m really tired of being a hermit.

*My dear friend Kristen will be moving to Canada in a few short months and while I’m super excited for her, I will miss her terribly. I know we’ll still talk, but my heart is saddened to know she won’t be able to just drop by and chat like she did last night. Those visits warm my heart so much more than I could ever find the words to say.

*There is very little in this world that can’t be made better by singing along with classic rock at the top of my lungs. It might not solve all my problems or erase the stress, but it sure helps in the moment.

*I am loving therapy and my new therapist. I find myself looking forward to my appointments with her and I know this is a good thing for me and my life.

*For the first time in the last few months, I’m really feeling hopeful. I wake up excited to face my day, even despite the pain that still racks my body. Yes, there are still stressors, but I finally feel like I’m in a place to better tackle them. I have hope again.

Spoonie Life: What’s Right For You

I belong to many different online support groups for chronic and invisible illnesses. I didn’t jump into all of them right after my diagnosis, in fact, many of them have only been since I started the Spoons 4 Spoonies project.

There are many benefits of the groups. We share inspirational or funny photos, tips to battling our diseases, or just the knowledge that we’re not in this fight alone. Which is no small thing, really.

However, there can be a down side. Sometimes it’s hard to see that there are SO MANY of us out there that are hurting and sick. Sometimes the tips that are meant to be helpful can be too pushy and not helpful at all.

We’re all only human, after all.

One of these groups recently shared a blog about things you should and shouldn’t do with a chronic illness. And while it had some great information, there was one item that really irked me. It was saying that you should immediately change your diet to one excluding dairy, soy, gluten, and anything else that might possibly cause a problem.

This is advice I’ve heard many times since my diagnosis, and not once from any my doctors. It is flung far and wide on the internet without any recommendation that you first discuss any extreme diet changes with your doctor.

And this is why that’s an issue for me…

Not any one diet will work for everyone. While soy might irritate my friend, I can tolerate it just fine and it has NO impact on my RA or anything else. I can have most dairy, but straight milk is not good for me. However, I know others among my groups that don’t have any difficulties with dairy.

Yes, there is some research out there that certain diets can help relieve some symptoms of various illnesses. Will it work for everyone? Nope. Just like each medicine doesn’t work for every one of us. Discussing diet options with your doctors means that you can find a plan that WORKS FOR YOU. Just like discussing treatment options with your doctors means that you can find a plan that is designed to work for you.

I’m not telling you to not make some changes to possibly ease your pain. I’m not telling you that you must, either. I’m telling you to make informed decisions that involve your medical caregivers so that you can get the very best results FOR YOU.

As for the next person who tells me to I need to give up gluten, my doctor says I can have all the bread I want. Excuse me while I go make some toast.

I’ve Got Answers!

I promised that when I had some concrete answers about my recent medical struggles, I would share them here.

I share for those who love me, so they can know I’m still standing and fighting. I also share for those of you who may stumble across this space because you’re struggling. So you may know that you’re not alone, and maybe you’ll find some hope in my words.

Just after my son left to head back to his father’s house, I started to have extreme pelvic pain. Because I have implanted birth control and don’t really have a cycle, I knew these weren’t female pains. Or, at least not the normal ones. At first I tried to write the pain off as RA settling in my hips. I restricted some of my walking and tried some different yoga stretches. My fiance rubbed my lower back each night so I could sleep. We tried it all.

Nothing seemed to help. There were times the pain was so bad that I would curl into a ball and sob uncontrollably. When the bleeding started, we rushed into the ER. The doctor there told me I’d had an ovarian cyst that ruptured and another one in my left ovary that was “concerning.”

I followed up with my doctor, who referred me to an OB/GYN. In the meantime, I was rushed to the ER three more times. The pain was so bad at times that I couldn’t eat. It got to the point I was told to stop all exercise. No bending, and absolutely NO lifting. Doctors threw around things like Endometriosis, Ovarian Cysts, and the ever lovely, “It’s all in your head.” It was clear to us that there was SOMETHING wrong, but nothing was showing up on their tests.

When I was finally able to see the OB/GYN, I was both terrified and anxious. I craved relief so badly that I was willing to sign the paperwork for a hysterectomy that day. Instead, after she performed my exam, she said I didn’t need surgery. It wasn’t my lady bits acting up at all, it was my bladder.

WHAT?!?!

We ran some tests to see if it was an infection. In the mean time, I also had some blood work done to check for some things that had showed up in my family history.

Within days of each other, I got a call referring me to a hemotologist to discuss a rare blood mutation and I got a call from the OB/GYN telling me there was no infection, I needed to be tested for Interstitial Cystitis (IC). For weeks leading up to the appointments, I was a constant mess. Anxiety, fear, and pain warred inside me.

This week I had my appointments and got my answers.

Yes, I have a genetic mutation that actually runs pretty strongly in my family. Fortunately, my particular mutations are not as bad as they could be. At this time, all they indicate is that I’m at a higher risk for a stroke or heart attack. But we talked with the doctor about lowering my other risk factors and we’re confident that I’ve got many good years left ahead of me.

The testing for IC was positive. While this might sound terrible to some, I’m happy to finally have an answer for this horrible pain. There is treatment for it, but it’s on the spendy side. So while we wait to see about getting me insured, I can control most of the pain with diet changes. While some items will make me sad to give up, it feels good to know that I can take an active and direct approach to controlling my symptoms.

As for the cysts, we’re looking at possibly changing my birth control method. While this method has worked well for me in the past, all the changes in my body have made it not a great option for us now.

August and September were rough months here. It seems as though every free moment has been spent in the hospital, at a doctor’s office, or a pharmacy. I’ve missed out on things because I’ve been confined to bed or my couch, in pain.

But not anymore. I have answers and a clear path to move forward. I have great doctors that are all working together to give me the best care and keep me as healthy as possible.

I have the tools now to take care of myself and be the best me I can be.

I must thank all who have prayed for us, sent well wishes, sent care packages, and for all the texts and phone calls during  this time. Your love and support is how we’ve made it. Without it, we would have been lost. From the very bottom of my heart, thank you.