Showing posts with label Fibromyalgia. Show all posts
Showing posts with label Fibromyalgia. Show all posts

10 August 2018

Fibromyalgia Friday

Happy Fibromyalgia Friday. Here are some of my favorite new quotes:




Hope these have been encouraging to you. Have a good day.

09 August 2018

Chronic Illness: Dreams and Depression

Happy Thursday my friends. Sometimes I find myself floundering these last 3 1/2 years. Come November it will be 4 years since I first got ill, first with tonsillitis and then chronic fatigue syndrome (later diagnosed as fibromyalgia). 
Since I cannot work nor finish my dissertation, at times I feel very depressed and lost. There were times when I felt especially lost because I could not drive myself outside and was reliant on medical transport to get to the doctor's office or friends to come visit me. Thankfully I have been able to move on from using medical transport and my wheelchair. I can even drive around town on a good day and sit through a theatrical performance. Yes I am usually incapacitated the day after but it's so important to feel some sense of freedom and enjoy opportunities for pleasure. And I don't even know what I would do without my beautiful dogs and family. Their love and support means so much and is able to bring a smile to my face even on the dreariest of days.
But what i meant to say before I got longwinded was that my therapist this week asked me why I could not start working on my dream. At first I thought it was laughable but heck, why not? I might not be as capable as when I was running around London and studying for my degree. But I do have a mind, sluggish as it might be, and so why not do some investigative work and poke around at fulfilling my dreams? Just because one is disabled and incapacitated in many aspects does not mean that I cannot dream and make the most of whatever this is.

Surely there is a purpose, yes?

22 July 2018

WW: Stuffed Green Peppers


Good morning! Today I want to bring you a tried and true recipe that will make your Weight Watchers experience that much easier. The stuffed green pepper. I remember my mom making these on a regular basis as a child. At the time weight loss was not an issue so the pepper was stuffed with steamed rice before she added the meat. However since we're trying to stay low in smart points I am going to skip the rice for today. But do know that Weight Watchers does not shun rice in general.

Ingredients:
2 bell peppers (any color will do)
1 pound ground meat
1 egg

these ingredients measurements will vary depending on personal taste
green bell pepper, chopped
onion, chopped
zucchini, chopped
tomato sauce
parsley, optional
low-fat cheddar cheese, optional

Directions:
  • preheat the oven to 350 degrees
  • wash and core the two bell peppers and place them in a baking dish
  • sauté the ground meat
  • don't forget to drain excess fat
  • mix the ground meat with the chopped vegetables and egg and any spices
  • stuff the ground meat and vegetables mixture into the bell peppers
  • bake for 20 minutes
  • add tomato sauce and cheddar cheese
  • bake for another 10 minutes
  • top with parsley before serving hot
If you are looking for a starch side dish, consider 1/2 of a small baked potato (2 smart points) or 1/2 cup of steamed rice is 2.5 smart points.

Accessible: Can't chop? Can't cut? If you don't have someone who can help you out in the kitchen (thanks Dad!) consider adaptive utensils and cutting knifes for those of us who are disabled, have arthritis and hand muscle weakness. Popular brands are Sammons and BunMo.

20 July 2018

Blogging With a Disability

Disclaimer: This post contains affiliate links.

Four years ago I was living life to the fullest believing my dreams were about to explode with rainbows and pixie dust and etcetera. Turning thirty years old I believed that it was going to be the best year of my life. It was indeed a fabulous year in London going to grad school and learning in some of the greatest museums and galleries of the world with an international cast of classmates and new bffs.

Fast forward to November 21, 2014, and I woke up to a nightmare. I could not feel my feet nor fingers. I couldn't see clearly and my eyes were burning for no apparent reason. My brain was overwhelmed in the midst of a fog I could not seem to escape. And worst I could not walk or move without intense pain. I was literally crawling from my bedroom into the kitchen for a glass of water I could hardly even hold. Welcome to my new "normal".

It's been almost four years and while some things have gotten better others have gotten worse. Even my primary physician says I have regressed in several areas. Ah, life.

Dragon Professional Individual for Mac 6.0 (Physical version)Because of my pain in my arms and hands, I can hardly type due to pain and numbness. I try to use Apple's free dictation app for my blog posts, emails and Siri dictation services on my iPhone for my tweets and facebook posts. Unfortunately the Apple dictation app on my MacBook is devious and will constantly delete what I've already dictated, and write things I never said. Talk about wanting to bang my head against the keyboard.

Trying to figure out a way to get Dragon Professional Individual for MAC. Even my therapist is telling me I need to get it... If only it didn't cost so much for the Mac version.

I have tried to look for alternative ways to blog. There's been my attempts at vlogging on YouTube but the setup and then the editing and posting is draining and difficult on the arms and hands and brain.

So here are some of my favorite tips for blogging with a disability:

The most recent tip I have tried is to create several posts in advance and schedule them for future dates. I love this!! It allows me during a "good" hour to create some blog posts that can come out later when I am not necessarily able.

Copy and paste. Nobody says you cannot copy and paste previous work to use as a template. Also when I am sharing calendar information, it is perfectly ordinary to use the script they've created as a starting place.

Do you have any tips? Suggestions?

Until next time,


17 July 2018

WW: Day 1 Snack

Morning! Happy Tuesday! Time to share a recipe for everyone's favorite food group. Chocolate. 

Come on, you know you love it.

Thanks to Weight Watcher's website and booklets I discovered a mouth watering way to satisfy my summertime craving for s'mores and a chance to indulge in some chocolate.

Bring on the S'more!
Recipe:

Ingredients:
12 mini marshmallows (1)
10 semisweet chocolate chips (1)
4 graham cracker squares (4)

Equipment:
Lighter

Directions:
Divide the marshmallows and chocolate chips on top of two graham cracker squares. To get the wonderful burnt taste to the marshmallows while also melting the chocolate down, use a lighter to catch each of the marshmallows on fire. Easy peasy. If you fancy the full effect add two more graham cracker squares to press down on the gooey marshmallows. If you'd like to save two smart points, try it as an open faced s'more such as Weight watchers recommends.

Accessible Note in the Kitchen: And for those of you with hand troubles like me (thank you Fibromyalgia) the hardest part is handling the lighter! If you have troubles with a lighter feel free to put your s'mores in the microwave for half a minute or bake in the oven at 375 for 5-10 minutes until the chocolate is melted and marshmallows are gooey.

So here is to positive healthy eating!

My Goal: 40 pounds
Day 1 Weight Loss: 2.7 pounds (!!!)

Next time we will discuss my Day 2 menu that includes dinner out and about without breaking the scale.

16 July 2018

WW: Day 1 Lunch + Dinner


For lunch on Day #1 I had some left over tuna fish (2 Smart points) with 15 Lays oven baked potato chips (2 Smart points) for a quick and easy lunch.

Alternative options: Some of you might like an open face sandwich. You can use one slice of bread for two smart point as well. Reduced calorie bread is one smart point per slice. Another option if you would prefer bread is to have an English muffin. I believe it is two smart points for a light muffin. I decided to avoid any sugar that might be in the bread and enjoy dipping my tuna fish with chips.

Tip: To keep your tuna fish light in smart points, consider using light mayonnaise and maybe substituting it all together with mustard which is zero points. I stuck with some reduced fat mayonnaise which is 2 smart points for 1 tablespoon, mustard and a spoonful of relish which is approximately one smart point.

For dinner I celebrated a good day done With 2 eggs, veggies and a peach that equal zero smart points. I have to read anywhere specifically the said you need to have fewer smart points at dinner time but I figured it won't hurt to try. I would have taken a picture but I was hungry and wanted to eat so started the wolfing it down before I thought to pull out my camera. LOL. But I think we all know what eggs and veggies and a peach look like don't we? And by the way if you live near Trader Joe's and fancy some peaches they have a great deal on a flat of peaches that are just delicious.

That's it for now. I hope this is been educational and helpful for you all. It's always helpful to know what works and that you're losing weight in the process Well being healthy. In particular I am trying to avoid too much sugar and the emotional snacking that comes with being home during the day with my thoughts.

Accessible Note in the Kitchen: And for those of you with hand troubles like me (thank you Fibromyalgia) the hardest part is prying open the tuna can! If you have troubles with a can opener try an electric one, ask a friend for help, or get one with a tab.

So here is to positive healthy eating!

My Goal: 40 pounds
Day 1 Weight Loss: 2.7 pounds (!!!)

Next time I will share with you my new favorite Weight Watchers chocolate dessert and snack that is only 5 to 7 points depending on a couple choices you might make. And you can still lose weight eating it!

15 July 2018

WW: Day 1 Breakfast

Morning! Happy Sunday! Time to start on our adventure towards healthy eating. I wanted to start off with a recipe for everyone's favorite meal of the day. Breakfast.

Multigrain Belgium Waffles! (2.25 smart points!)
Mix together:
1/3 Cup Trader Joe's Multigrain Baking & Pancake Mix [4 Smart points]
1 Egg White [0]
1/2 Cup Unsweetened Original Almond Milk [<1]
1 Tablespoon Oil [4]

Split batter into 4 sections. Personally my Belgium Waffle maker makes 2 whole waffles which I split into 4 portions.

Because fruit counts for zero points, feel free to top your waffle with your favorite assortment. On Day #1 I used fresh strawberries. Yum!

If you're looking for a little something sweet and moist, consider pureeing some strawberries with water in the blender [Zero Points] or you can add up to 1 Tablespoon of Sugar Free Lite Syrup for 1 Smart point!!

For some added protein, I also baked one slice of Turkey Bacon (1 smart point) on the side. But you could also choose zero point eggs.

Easy peasy and yummy. And for those of you with hand troubles like me (thank you Fibromyalgia) the hardest part is the few seconds stirring the batter at the beginning. Heck you could use your mixer if you want!

You can have your carbs and lose weight too!

x

My Goal: 40 pounds
Day 1: 2.7 pounds (!!!)

Come back later for my Day 1 lunch and dinner.

09 July 2018

Fibromyalgia: A Good Day

FYI: For any new readers, thanks for visiting! And many pardons in advance for errors because I use a dictation app to write my posts due to my pain.

After my last post on my Fibromyalgia frustrations you probably are wondering what I would consider a "good day"...

Man, that is a really tough one! Today I was reading an article on questions to ask your doctor about Fibromyalgia and Chronic Fatigue Syndrome (another diagnosis that's been floated around) and I wanted to hurl. It was so sad and depressing to read questions such as whether I should take my medication and when I'm having a good day feeling fine. I wanted to laugh, cry, hurl, et cetera. What gibberish to say that I was having a fine day and didn't any my medication. With my medication I'm lucky enough to feel a level VI pain on a good good day. And Yes I was a deliberate good good day. LOL. But the truth is I don't know what it means anymore to feel fine. I don't know what I mean to say is this too much exercise? I don't know what it means to Question how much is too much. Actually I do know that question. There are times when I wonder are you going grocery shopping on a Saturday with my dad that will have me incapacitated for the rest of the weekend. Or whether going to retirement party at a friends home will be too much and cause me to have anxiety, excessive exhaustion and horrible pain otherwise can be avoided. So yes I do know the latter question but I wish oh yes I wish that I knew the question of can I take my medication on a fine day when I don't feel like I needed. That would be a fabulous day.

But we are speaking in real terms and so I will describe today what a good day is. Yesterday I had a good day. I rested in the morning, Took my medication, petted the dog, did a little Google research of no importance, made lunch, and managed to shower. All before 4 o'clock in afternoon. And this was thankfully a good day and gosh darn it I lost my page again. I am just complained about how much I hated dictation app because I'm always losing my space, having my work deleted, or being transferred to a completely different page that has nothing to do with my. Post. And guess what it happened again. So let's try to keep this short or I might go crazy LOL. So mom suggested we go to see a movie to get out of the heat because our home does not have air conditioning. Heat wave days are the worst especially because of my heat intolerance in combination with the lack of the cool air. So we googled movies playing and I am woefully out of touch with what is playing currently. We decided on Antman, bought our tickets online and headed out to them mall. I am thrilled to say we found a parking spot in the very front of the lot's. Thank God for my handicap placard and for perfect timing. We parked and walked over to the red Robin next to the movies. Somehow I must've been woozy and more uncorrelated on my feet than usual so walking with my cane was quite amusing. Thankfully no one was tripped away needed to our destination in one piece. We were seated at a booth which is always my favorite meaning I can stretchout my legs to the other Seat and propped my elbows and wrist up on the table. Yes I probably would not work in a fine dining restaurant but this was a chain burger restaurant. Perfect for slouching getting comfortable or at least as comfortable as can be in a public environment.

After dinner mom and I went to the movies discovered our seats were upstairs so thank the Lord there was an escalator so up we went. I was doing pretty fine after our dinner so we settled in to the so Called recliner seats which were really not. The good thing about our seats was that because they were in the front row of the balcony I was able to stretch out my legs and I was able to use the armrest for my elbows and wrists. So we settled in and had some good laughs watching Ant-man. Gosh darn it. Fails me once again. Okay back to the story. As far as comfort goes I would rate these chairs a C. They were comfortable like sinking into a couch and had the necessary armrest. Unfortunately they did not recline so my neck and back suffered more than I'd hoped. The tough part was when the movie was over I was pretty week and unbalanced getting up. So took a little maneuvering to get out of my chair and out of the Cinema. We walked slowly back to the car and by the time I had open the passenger door I was counting my lucky stars that moms car was so close. I don't know if I could've walked anymore steps. What's that saying, God only gives you as much as you can handle? Was quite true in our case that evening. So we headed home I grab my ice pack my pillow and laid down to cuddle with my dog as much as he will let me. That my friends is what I would call it a good day. My pain level was primarily at a low of six. I was with my mom. Being with people is always a blessing. I did something different that I can't even remember the last time I did by going to dinner and a movie. I Lived to tell about it. That is a good day.

What is your idea have a good day? Feel free to sharing the comments below as I go get a fresh ice pack and some more medication for my pain LOL. Hey I didn't say life is perfect or even back to what I would call normal but it's something. Days like these I think of when I'm feeling exceptionally frustrated with my situation. Until next time xo.

PS thank you for overlooking the errors due to my using a dictation app.

05 July 2018

VLOG: Chronic Illness + Socialization

Bonjour! Hola!
With the recent holidays just past I thought it was a good time to share about the exhaustion that comes from socializing for anyone with a chronic illness such as Fibromyalgia, Chronic Fatigue Syndrome and/or MS... Think it's easy for someone like me to come out and visit over a bbq? Think again...


01 July 2018

God HAS a plan...

Happy Sunday and 1st of July!
My body is tired, drained and achy which always makes me feel more drained and tired emotionally so if you are like me looking for encouragement here are a few of my favorite quotes:





For more of my favorite quotes check out my Pinterest boards.

28 June 2018

Fibromylagia Frustrations

Hi guys! It is been a while since I gave a health report. Sometimes with dictation Apps I want to scream! For instance right now it just deleted everything I had already written. Somehow it thought that I said the words undo it. The joys of not being able to use my hands properly. The little women review that I wrote last time actually took probably 2 1/2 hours for me to right with hunting and pecking type motions. And even though I was just hunting and pecking with my main two fingers I still had a lot of pain in my hands and wrists afterwards. That's not of course to say that I didn't enjoy seeing Camarillo Skyway Playhouse's Little Women production. So let's talk about health...

Today I went to see a new neurologist. He was a very how do you put it matter of fact type doctor. He was reading notes on the computer from my previous doctors I assume and listening to my answers at the same time. He did do a check up and had me walking. It was very interesting because I did not have my cane and he had his hand on my elbow to steady me. He kept asking me to walk faster and laugh out loud Thankfully there is no falling on the floor that would've been very embarrassing. Not sure if I accomplish what he wanted but it was an experience. He seems to think that I have fibromyalgia as my first rheumatologist diagnosed me and so did the neurologist at Cedars-Sinai. So what do we do with this? He is going to be giving notes to my pain management specialist and my primary doctor. He's just keeping up with physical therapy and of course the usual exercise. He even mentioned possibly getting a personal trainer to help me on a day-to-day basis. I don't think that is one of the things insurance covers LOL. So what am I thinking?

I would love for the doctor or any doctor to say that I have one diagnosis and this is how we heal it. Unfortunately no one has ever been out to do that for me. Even the doctor says that it is likely I have several issues including fibromyalgia, cervical stenosis, possibly dysautonomia which that other rheumatologist suggested, and something to do with my lungs that the pulmonologist is working on. Yes. Deep sigh. If only things were simple LOL. So where does this leave us? Sometimes I feel like we're always going back to square one. I have tried diets (eg. Whole30), acupuncture, herbal supplements, et cetera.

Oh my gosh! Speaking of difficulties with dictation apps, it just decided I needed to open another webpage and closed out of my blogger page just now. I have had to go back and retype or redictate several sentences. Thankfully blogger saves automatically at different time points. But you can see how silly and crazy it can be and how difficult type/dictate a blog post every once in a while. Let alone emails and text messages. Okay off my rant and back to my original post…

I was saying it seems like we have tried most everything that Medi-Cal here in California Will cover. I am very grateful - - - please don't question - for all the wonderful doctor and money saving opportunities I have had through Medi-Cal such as my great surgery at USC Medical Center. It has been a true blessing these past few years. But hopefully we are looking at the bright side my disability will come through this summer and I will be eligible for Medicare. That does mean payments but I will have my disability check to cover it. Sorry I hope this is not huge Post full of errors and run-on sentences.

So the next step… I am looking into a clinic in Mission Viejo that my brother recommended. His coworker had a great experience there and was able to fully recover from her own autoimmune disease. There's a lot to research and look into. But we shall see! I am just so grateful for the support I have from my parents and my brother and my good friends. Where would I be without you all?
Lots of love. Time to go ice my elbows and my neck maybe take a nap. LOL. Hey all in the day of the life of someone with a chronic illness, right? XO

05 December 2017

Health Alert: Ventura Fires

hi loves. if you are like me with an impaired immune system and suffer from an invisible illness, please be advised smoke and fire season is no joke. several years ago i had valley fever and was at least 10 miles from the fire. you never know and it can be very crippling!

so here are just a few hints for how to help yourself during fire season:
- keep indoors unless necessary.
- stay HYDRATED! you need to flush out your lungs.
- wear a mask or cover your mouth/nose when outside but know those won't help with fine particles!!
avoid burning candles, frying meat, even vacuuming, which can all add more tiny particles to the air.

and please remember dogs, horses and livestock are also susceptible to catching valley fever and other smoke induced illnesses. for info on valley fever in dogs - check out VCA.

21 November 2017

Health: Three Years...

My home in London. 2014.
3 years ago, I was living the dream in London making lifelong friends and studying for my Masters. On 21 November 2014 I went to see my physician after things got worse post my earlier episode of Tonsillitis. My health had deteriorated as if overnight going from one day when I was up and about to the next when I couldn't see clearly, I was experiencing terrible neuropathy and weakness and pain in my hands and feet meaning I had to crawl to the kitchen for a glass of water that was too heavy for me to hold and I needed friends' help getting down stairs and to/from the doctor's office. Life was impossible or so it felt. Mum even had to fly out on Thanksgiving Day to help me pack up and fly home for the unforeseeable future as I recovered.


The doctor on 21 November 2014 (3 years ago) said that I had Chronic Fatigue Syndrome/Post Viral Fatigue and even gave me a doctor's note to take to doctors and employers excusing me because of "fatigue". I couldn't help laugh because it sounded so insane and I couldn't imagine anyone taking this diagnosis serious. Thankfully my advisor/professor at the university was extremely helpful and has been throughout this crazy process. Friends were AMAZING (Huge shout outs to Natasha, Mafe and Ola) and I couldn't have felt more loved if I tried.
pre-surgery. 2016.
Fast forward 3 years and what has happened...

  • I was diagnosed with CERVICAL STENOSIS and DEGENERATIVE DISC DISEASE in Summer of 2016. This really came as a huge surprise and is thanks to my neurologist, Dr. Alboiny, for being thorough in his research!!!!
  • I was diagnosed with FIBROMYALGIA in January 2017.
  • I experienced with LYME supplements but felt no difference.
  • I gained 30+ lbs. thanks to LYRICA and a couple other medications. BOOO!
  • I had SURGERY on 7 September 2016 at USC. What an amazing facility and staff.
  • I've sampled almost all drugs possible but am down to two -- Gabapentin and Duloxetine.
  • I've been in physical and aquatic therapy since 2016.
  • I was able to complete my university assessments (not including the dissertation) for decent marks.
  • I have been to the ER twice, once having to stay in hospital for a week of studies.
  • Have my very own wheelchair and walker and shower bench.
  • Adopted a Yulin Survivor dog, Hastings Alyosha, in February 2017.
  • Fallen at the Dallas Fort Worth Airport and been laughed at by staff there!
  • Applying for disability... what a nightmare.
  • Used several types of wrist/hand braces without success.
  • Been told by pain management specialists there is nothing they can do for me.
  • Seen countless doctors and specialists locally and at Cedar Sinai and USC.
I'm still at home, folks. Yep. 

My rescue dog. February 2017.
I still cannot use my hands to even cut a piece of fruit or meat. I use the free Apple dictation service (Horrid) and hunt/peck with my fingers. I use pillows to prop my hands/arms up to help lessen the pain. I still cannot walk without my walker or the arm of a friend/family member. There is constant neuropathy and pain in my hands and feet. I am using ice at all times when home for back, neck and legs. 
with Ashley at Sister Act. 2017.
I am not able to work or finish school in my current state. And now to add more to think about, I found out that my university has a 'standard' limit for how many years a student can be enrolled - 4 - and that means I am no longer enrolled as a student and would have to RE-enroll (£$) to complete my graduation project/dissertation.
My girlfriend Laura took me to tea for my birthday. 2017.
My happy days consist of some of the following: loving on my rescue dog (Hastings Alyosha) and our other rescue dog (Shadow), getting my afternoon nap (medication makes my fatigue/exhaustion even worse), making breakfast and lunch, being able to put away the dishes, making my bed and taking a shower, checking social media, taking the dogs on a short walk around the block, and/or maybe a conversation and visit from a friend. That's my day, folks. And usually I have 3-4 medical appointments per week so that takes up a lot of my time too.

And thanks to my blog I have been able to have excursions to the theatre or an art exhibit or the circus or etc. but those excursions come with a cost of 2 days at least of rest afterwards plus extreme pain when sitting or walking or just breathing.
an art exhibit i was able to attend in 2016.
Man, I did not mean to make this post a downer. Just wanted to share what's happened in the past 3 years. Trying to figure out what next... Physical therapist says I am walking better with more fluidity (no more tin soldier -- Yay!!) so that is probably our biggest cheer. Aside from that, nothing seems to be working much. We will continue to see... Right now my hands are screaming from hunting and pecking on the keyboard and my brain hurts from dealing with the faulty dictation service and I have a head cold (rah rah). To bed I go.

happy times in London with Natasha. 2014.
Have a great night and a huge thank you to all my amazing friends and family who've stood by me and not forgotten me and loved on me. I don't know if I would be here without y'all. <3 The hardest part of this illness is the "isolation". I cannot get myself out to see folks as I used to, I cannot pick up the phone without my hand spasming and I am often so tired and drained that the idea of texting someone is too trying and tiring. And i know people are busy and without me being at the same social gatherings it becomes hard too on others but without my true girlfriends and Derek I don't know how I would have survived the last 3 years without going seriously insane. 
So thank you Natasha, Ashley, Laurie, Laura, Kaz, Derek, Ola, Mafe, Heather and Misty for not forgetting me. Thank you for holding my hand, sending me mail, letting me cry, sitting there, and getting me out of the house among civilization!! You guys will never know how much you have helped.

20 November 2017

Vlog: A Bad Day

what does a bad day look like?
Don't let the smiles fool you...

22 September 2017

Chronic Illness: Feeling Low?

HI folks. If you are like me, you probably have terrible bouts of loneliness and depression. Not fun. But the good news is that there is always something worth smiling about and worth looking forward to. But we just have to remember, right? That's the tough part.

So hopefully this short video will be encouraging and so will these quotes I have found for you tonight.
YOU ARE NOT ALONE.








xo Joy