Friday, September 25, 2015

Don't choke!

Day 6-10

So I may be slacking a little but this last week was craaaaaazy!

Our poor 13-year-old pup Chelsea has had a week long panic attack and I went back to work on Monday. So this week was a blur.

But it has now been 10 days post surgery and some things are...well they just are. My burping... or urge started to decrease around day 6 and has continued to not be as bad. Maybe I am just coping with it more, I don't know. I will say... actually getting out a real burp is the most amazing feeling ever. It disgusts me that I feel this way... but no joke... it is amazing!

Day 8 was interesting. I experienced my first real bout of dysphagia.. which I had heard about. I had a bite of a waffle with banana. I apparently did not chew well enough because the food got stuck in my esophagus. It is pretty uncomfortable, borderline painful. I tried to drink some water but nope. There was not room so most of it all came back up. Good news I can vomit! Sorry for the TMI but helpful to know if you're dealing with this! This happened to me today as well but it didn't last as long... stupid waffles and bananas. I realized walking around for about 5 minutes or so helped to resolve the issue. But every day that passes I'm thinking less and less about the Linx, so I am getting back to old habits. I guess this is a good and bad thing!

Things that I find hard to eat: Waffles, bananas, crinkle cut fries. I don't know why... they just are.

Today was also my first day back exercising. The doctor said as soon as the soreness from my incisions was gone, I could start working out again. Today I did a yoga class. I tried to be careful not overdoing it, but overall I did everything pretty much as normal.

I am still dreading the week 4 mark as it looms closer and closer... it's like scar tissue is closing all around me... in my mind.

Overall, I am doing well and still have not had any reflux since day of surgery! Woo! No more morning sickness!

Saturday, September 19, 2015

I've got to admit it's getting better... a little better all the time

Day 5

This has probably the best I have felt since surgery. I haven't really noticed my incisions, except when one my dogs steps on our cuddles up to my stomach. You can't help but notice then.

Still eating as normal. Still sleeping well. Still dreading week 4 mark. But I can't stop it now. I feel like I am climbing the roller coaster and once I hit week 4, it will all be down hill from there. I have read a lot of people are back to their pre-surgery diet and eating around the 12 week mark. So by Christmas I'll be good to go..... Christmas... so close yet so far!

The lump in my throat is not really an issue anymore. My neck is no longer stiff, which makes me think that was a result of the gas used during surgery. But my biggest problem and most annoying problem is still urge to burp. I drank a carbonated beverage and had no issue, but about an hour later, the pain of not being able to burp came back. Hot tea has helped to kind of suppress it for a period of time, but it just keep coming back with a vengeance every time. I am trying some gas relief to see if that will help.

I go back to work on Monday and I am pretty excited to get back to a life of normalcy. I am bad at letting myself recover because I constantly want to go, go, go. There is always something I need to do. But I just have to keep reminding myself that the to do list will be there tomorrow.

It's so hard for me to push this cuddle muffin away... until she steps on my stomach... then it's really easy!

I'm home!

9/17/15 & 9/18/15

Day 3 & 4

First full day home. My neck is killing me! It feels like my head weighs 30lbs! I literally have to lift my head up with my hands if I want to move from laying down to standing up. Other than that inconvenience, getting in and out of bed hasn't been an issue... not that it ever was.

For breakfast I had yogurt, no problem. Lunch was leftover Mexican food, no problem... just need to eat smaller bites and chew more. Dinner was pizza. In the time it took my husband to eat three pieces, I just barely finished one... and my husband is not a super fast eater.

The good news about eating slower is that you eat smaller portions. So if you don't practice portion control... you will after this surgery!

Still have a bit of a lump in my throat but I haven't noticed it as much.

The swelling around the incisions has gone down a lot! So yay! Normally looking belly soon!

The biggest annoyance aside from my neck is burping. I keep having the urge to burp but then nothing comes up, and it's a bit painful when air gets stuck below the Linx. This is apparently normal too. I hope this resolves soon.

I decided to become a cyborg

9/16/15

So much has happened since my last post, but the main thing is that my RA is officially in remmission! Woo! So if it's not one thing... it's the other. This is just another reason why I feel like a 75 year old.

Since about the age 3, I have dealt with GERD (gatroesophageal reflux disease.)  Since reflux has always been something I've just dealt with, I didn't realize just how bad my reflux was until I went to Mayo Clinic in April 2014. After increasing my meds to little avail, the next option was surgery. So here I am today post op in a hospital room. 

I opted for the LINX Managment System instead of the much more difficult and complicated but gold standard Fundoplication Surgery... aka a stomach wrap. I had to stay overnight but I understand some places hospitals consider this an outpatient surgery.

After scouring the internet for information and patient experiences with this surgery, I came across a guy from the UK who blogged about his experience. It was so helpful for me to read someone's firsthand experience, so I could know what to expect and gave me a better idea of questions to ask my surgeon before I went under. So I am basically writing this so maybe someone else who is preparing for this surgery can find this helpful and get a better understanding of what to expect.

Day of surgery
Yesterday I checked in at 5a to get this party started. I was told the surgery would take 1.5 hour but I think lasted closer to 40 minutes. Before I knew it I was back in recovery waiting for my room to be cleaned. I woke up with no pain and just slight discomfort. I have 4 incisions just below my ribcage and one in my bellybutton. This is a laparoscopic surgery so the incisions were only about 1cm. My surgeon was able to use glue to seal me up instead of stitches. 

After about an hour I was finally taken to my hospital room. I ordered some room service and ate with not a lot of trouble. I did, however, quickly discover that food gets stuck in your esophagus easily if you aren't careful. You have to figure out how to eat with your new, little device. I read this before and highly suggest to anyone having this surgery to remember to CHEW, SWALLOW, WAIT. I noticed water helped to push food through if I was having a bit of trouble.

So my first meal was half of a turkey sandwich on white bread, cottage cheese and peaches, and mac and cheese. Like I said before, not a lot of problem. Just had to take small bites, chew throughly and wait for it to pass through. For a snack later that day I ordered some fries, which were a little more difficult to deal with. They just wanted to hang out in my esophagus. I drank a lot of water with those guys. For dinner, it was pizza, peaches and a chocolate cake. So yum... I am actually surprised how good the hospital food has been. 

Day 2
So here I am, day 2... still in my hospital room waiting to see my surgeon so I can be discharged. Still feeling good. The pain meds and anesthesia that I received during surgery have worn off a bit but still no pain, just some discomfort in the area of the incisions. The biggest pain has been a severe stiff neck. I am contributing it to the gas used during my surgery. It has improved with heat.

But let's get to breakfast, biscuit and gravy, peaches and a hardboiled egg. The egg was a little difficult to go down because it was so dry... and so is my mouth. So it just didn't want to go down. But overall again, not too bad. I had a little pain/discomfort when I swallowed too big of a bite, but it went down after a bit and with the help of water.

I have a little bit of nasal drainage this morning and a lump in my throat, which I was told is normal. I am easily about to get up and walk around, not really any movement restrictions.

My surgeon finally came in around noon to discharge me and I was out of there!

I have read and have been told I need to exercise my esophagus so the scar tissues doesn't cause the Linx to not be able to expand. So my goal is to eat at least a little something every 3 hours or so. I am the type of person that can go all day until dinner without food if I am staying busy. So eating on a schedule will probably be a little difficult for me. I have heard the hardest recovering time is between the 4 and 8 month mark. That is supposed to be the time when scar tissue forms, so... looking forward to that.

And here are some nice stills from my surgery. You are welcome.

Here's a link to the post I found before surgery that really helped me get a better idea of what to expect.


Monday, February 4, 2013

Things be happening

The following post I wrote on my flight back from my wonderful trip to DC to visit my bestie Jenna in August 2012. It was before I got engaged, before my job position changed, before a lot of awesome things and other things happened in my life. Since I already had a lot written and I haven't posted in quite some time, I thought I would go a head and share.

Here I am at a cruising altitude of 39,000 feet and it is hard for me to sit still in my middle seat. Sorry people to my left and right. I don't think I have stopped moving this entire flight. The past week I have had an overwhelming feeling of joy that things are happening, and I have so many exciting things in store for my life in the near future. Some things I know, others I things I have no idea but I am excited. 

One amazing thing is the start if a new med! The most recent try after my failed Humira attempt was Orenzia. Unfortunately, that made my WBC spike to what my doctor said was "scary high." Always comforting to have your doctor use the word "scary" when talking about your condition. So this Friday we head forward to infusions. I have had an infusion before. Basically I get to sit in a chair for 3+ hours attached to an IV. I will say at first I was very not excited about this. I think it frustrated me that my RA controls a large part of my life and the previous treatments were, for the most part, not very time consuming and relatively a breeze. Now we are talking about having to take a big chunk of time out of a day every 8 weeks. However, I am looking at the positive side of this and I'm thinking how many books I get to read, all the "me time" I get to have, all the movies I get to watch. It really won't be too bad of a thing to deal with. Plus new meds and research are constantly coming out so I very well could not be doing this for the rest of my life.

And then the plane landed. 

So to catch everyone up to speed, I got engaged since then! :)



Spencer and I have been dating since 2010 and I love him soooo much! I couldn't have asked for a better man. The stuff he puts up with...God bless him.

This was right after dinner... his "I am so exhausted I don't know whether to puke or faint... I just can't talk right now" face.
And every girl has to have a nails done ring picture. I had my nails done for about 2 months in hopeful anticipation :) 
Spencer proposed at the Chihuly Exhibit in the Oklahoma City Museum of Art on September 21, 2012.

From there I was in the middle of trying an new medicine, Remicade. My doctor wasn't seeing the results she wanted, so she upped the meds and the frequency of the infusion to every 6 weeks. 


I actually didn't mind getting the infusions at all. They had nice big comfy chairs, I always brought my computer and I definitely got some good quality "me time."

Unfortunately after I think 7 treatments, I was feeling bad again just a week after the infusion, which shouldn't happen. While my blood tests showed my RA was partially controlled, my doctor said she thought we shouldn't waste any more time on this drug because it is not giving us the results we want. 

So now we are caught up to today. New day, new drugs.

I am now taking the newly approved Xeljanz. I am again super excited about this one, despite the whole "newness" thing. But what are you gonna do. All drugs were new at one point. Someone has to be a guinea pig. 

Xeljanz is an oral pill taken twice daily, which is awesome because taking a pill takes like .5 seconds. So that's like a second every day instead of 3 hours plus treatment every six weeks. The other thing is, this drug has shown really good results in people where other medications were not effective. It works on an entirely different pathway than any other RA medication (DMARDS, Biologic, NSAIDS, ect.). And I've tried them all so yay for new meds! My doctor said several of her patients reported improvements in just a couple of weeks. 

Maybe it is just me being hopeful, but I will say, this has been a pretty decent arthritis pain-free week. The only downside I have experience is a little nausea, but I am used to that. So as I enter week #2 on Xeljanz all I can do is hope and pray that this is my perfect cocktail.... minus the daily predisone.... which I would like to stop taking before my wedding... because it is making me gain weight and there are few things more frustrating than gaining weight that is out of your control. If I am going to gain 10 lbs in a month, I would like it to be because I enjoyed a delicious double cheeseburger from Patty Wagon. Not a crappy tasting 10mg steroid pill. Please and thank you.

Jeremiah 29:11
"For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you. Plans to give you hope and a future."

Monday, July 9, 2012

Bottoms Up

Here's to a new week and good health.

We have now begun yet another change in meds to find my perfect "cocktail." Two Fridays ago I started a new treatment. Orencia. The first treatment was an infusion that will hopefully help jump start the medicine. After that I am now back to weekly injections of stabbing myself in the leg. Luckily after my first round of shots, it seems to be the most painless injection I have taken thus far. That is compared to Enbrel which to me felt like someone was pouring alcohol on an open wound. Humira wasn't too bad but Orencia has been a breeze, thank you Jesus!

So we shall see here in about 2-3 months if this works!

On a side note, I have begun to acknowledge (I say acknowledge because I knew this was true but refused to actually do this) that along with my exercise routine, there are certain things I need to include and take out of my diet. Studies have shown that RA symptoms can be greatly affected by what you put in or leave out of your body (This is really just health in general... you are what you eat).  So there is a blog I follow and she had some great suggestions for things to eat and do and things to not eat and do.

While all of her suggestions are specifically talking to people with RA, really they can be for anyone who wants to try to live a cleaner, healthier lifestyle.

Changes I have made so far.... reluctantly:
Reduce meat
Eat more fish
Reduce gluten
No nightshade veggies (see below) which includes potatoes... I miss my fries!
Pretend to reduce sugar... it's baby steps.

Below is her post: 

PRIMARY DIETARY OFFENDERS:

1. UNHEALTHY FATS. Trans fats and other hydrogenated oils are the primary offenders. “We know that as little as 3g of trans fats a day can lead to an increase in heart disease and stroke risk,” says Fred Pescatore, MD. Saturated fats from animal products also are linked to the production of inflammatory chemicals.
2. REFINED CARBOHYDRATES. Inflammation can impair blood sugar regulation, which is worsened by eating refined carbohydrates/high-glycemic index foods, such as sugar and white flour.
3. ANIMAL PRODUCTS. Meat, poultry, eggs and shellfish are all high in arachidonic acid, a compound that contributes to inflammation. Eat organic when possible, and choose fish, white meat chicken and nonfat dairy products to lower arachidonic acid consumption.
4. GLUTEN. Wheat and many other grains, like rye, barley and spelt, contain a protein called gluten that may be associated with inflammation.
5. NIGHTSHADES. Potatoes, tomatoes, eggplants and peppers are members of the nightshade family and contain a compound called solanine that can trigger inflammation in some people.

INFLAMMATION BUSTERS:

1. SALMON. Wild-caught salmon is high in omega-3 fatty acids, which reduce inflammation. (Avoid farm-raised salmon; it’s higher in arachidonic acid, as well as PCBs and other toxins.) Herring, mackerel and sardines are also rich in omega-3s.
2. WALNUTS. A source of omega-3s, walnuts appear to counter some of the inflammatory processes that lead to heart disease. They are packed with other healthful compounds, including vitamin E, which is a powerful immune booster, says Pescatore.
3. ONIONS. Onions are high in quercetin, a type of antioxidant that inhibits enzymes that trigger inflammation; onions also contain sulfur compounds that are used to manage the body’s immune system. Other sources include apples, broccoli, red wine, red grapes or grape juice and tea.
4. BLUEBERRIES. Blueberries are loaded with anthocyanins, a type of polyphenol antioxidant that boosts immunity and protects the body from free radical damage, which triggers inflammation. Other good sources of polyphenols include blackberries, strawberries, raspberries and cranberries.
5. SWEET POTATOES. Sweet potatoes are rich in carotenoids, antioxidants that, like anthocyanins, boost immunity and minimize inflammation. Other good sources of carotenoids are deep orange, red, yellow and green fruits and vegetables, such as carrots, winter squash, red peppers, mangoes and papayas.
6. SPINACH. Spinach is rich in inflammation-fighting carotenoids, as well as immune-boosting vitamin E. Other greens that are great for immunity are kale, chard, turnip greens and mustard greens.
7. GARLIC. Like onions, garlic is rich in sulfur compounds that stimulate the immune system by boosting the activity of natural killer and T helper cells, which manage the immune system. Garlic is also a potent anti-inflammatory agent.
8. PINEAPPLE. Bromelain, found in the pineapple stem, is an enzyme that decreases inflammation and has some immune-enhancing effects. Pineapple is an excellent source of the antioxidant vitamin C.
9. GINGER. Fresh ginger root acts as an anti-inflammatory by inhibiting COX-2 enzymes, part of the chemical pathway that produces inflammatory chemicals.
10. TURMERIC. Turmeric is the key component in curry, turmeric contains curcumin, a compound that has anti-inflammatory effects; like ginger, it works as a COX-2 inhibitor, says Reinagel.

We will continue to struggle with flares but it's possible to have less of them as we can support our 'healing system' to become virtually pain free!

WAYS TO SUPPORT YOUR HEALING SYSTEM:

1. NURTURE. Nurture your body to give it quality fuel in order to sustain a strong immune system. Personally I chose a version of the Mediterranean Diet rich in fish, vegetables and olive oil which helped me. (olive oil, extra virgin, first cold press)
2. HUMOR. Keep a good sense of humor and laugh often, surround yourself with positive fun people. This is very important for your healing system; your endorphin levels will soar and the side effect is stress relief!
3. EXERCISE. Exercise helps us manage our weight and moods. It promotes better health in numerous ways. Exercise can be fun things, like dancing, biking, or even taking a belly dancing or tap class. Swimming is excellent, it's what I did for a year when I couldn't walk.
4. WATER. Drink ample amounts of pure, clean water to help your body rid itself of toxins and keeps organs working more efficiently. It's recommended by health professionals we drink 8 glasses. Do not substitute other beverages, the body needs clean, fresh water, preferably at room temperature so not to chill the organs.
I use Lemon slices in mine, which also helps encourage elimination.
5. VITAMIN D. Vitamin D is derived naturally from the sun. Nutritionists now suggest we need daily exposure to the healing rays of the sun. Early morning, until 10 and early evening after 3 is the best. Avoidance of the sun is not considered a healthy choice. Another option, Cod Liver Oil, get the best, I suggest Carlson's.
6. EXTRA VIRGIN OLIVE OIL. Use 'First Cold Press' for salads and table use. For cooking, Coconut Oil which does not change to a killer fat during the heating process. Jeanne Calment, who holds the record for the longest confirmed lifespan, reportedly attributed her longevity and relatively youthful appearance to olive oil, which she said she poured on all her food and rubbed into her skin.
7. ORGANIC. Go Organic! Organic fruits and vegetables have more flavor, higher nutritional content and less toxins. Organic vegetables have a shorter storage life but they contain a higher amount of live plant enzymes necessary daily to aid our digestive process.
8. FRUITS AND VEGETABLES. Eat fruits and vegetables that are local when available and in season. Lightly cooking vegetables is advised. *Juice whenever possible. I recommend 4 days a week.
9. REDUCE MEAT. Reduce the amount of beef and pork, eat instead chicken, fish, eggs, beans and tofu for protein sources.
10. SUPPLEMENTS. Add quality supplements to your diet everyday to ensure you are receiving adequate amounts of all 50 required nutrients required by the body. I use Standard Process. When looking for a quality supplement it is important to know the manufacturing company produces products which meet or exceed established standards of excellence in supplement manufacturing.
11. LIFESTYLE. Lifestyle changes can make a big difference, get proper rest and enough quality sleep. Listen to your body, it will signal you with symptoms of distress when it's heading towards illness. Listen to it!

Thursday, April 26, 2012

I climbed a mountain!

My name is Tiffany and I have a problem. I am terrible at taking pictures when I should, and I keep them on my phone for way too long without doing anything with them. My phone is just a jumbled mess of pictures. So today I thought, you know, maybe I should post that trip to Denver back in September on Facebook. I am pretty sure I told many-a-person that I would share the pictures... 7 months later is still timely.

So I created my Denver/Albuquerque album (if you're my FB friend you can check them out) and forgot how much fun and how memorable of a trip that was. For one, Denver is gorgeous and so much fun! Second, we got to spend the second half of the trip with some of Spencer's best friends in Albuquerque. They are definitely some of my favorite people! But one day on the trip, a couple of us decided to go hiking... up a mountain... a little more than 12 miles. And in case you forgot the direction of a mountain... it goes up!

So that morning, we got up early, packed our Gold Fish and PB&J's, filled up our Camelbaks and started trekking up this thing. What really scared me the most was the thought of coming foot to face with a rattle snake. Stu and Jenna, who live in Abu and hiked with Spencer and I, talked about how they've seen rattle snakes along the trail and it's not a big deal. Really?! A rattle snake? Not a big deal?! Needless to say... a majority of the beginning of the trip, my eyes were locked on the ground looking out for death.

This was my forced "I'm having fun and not worrying about snakes" smile.


After about mile 7, I was tired and I figured if the snakes got me, well at least I died in a pretty place. The hike was so beautiful the entire way up. It is so amazing to see God's creation from this perspective. I've always said that the higher you are in altitude the closer you are to God... mainly because the higher you are, the closer you are to certain death if something goes wrong... just saying. How many people pray for the first time in years during bad turbulence? Man a lot of death talk on this post. I promise it gets happier.


Then after more than 4 hours and 12 miles, we made it to the summit! It was the most incredible feeling! This of course was back in September, but my stomach gets all butterfly-ee when I think back on that moment. That moment of feeling like you conquered... no kicked something's butt! I think back to how bumpy my health was then and how many strides I have made up until now. If I was able to climb a mountain at one of my worst points, think of the things I have to come!


I may never run a half marathon again but hiking almost a half marathon ain't half bad. (I bet there is a pun somewhere in there) I know it's only been a year, and I know my battle has just begun, but by golly, I have faith that can move a mountain! I have faith that things happen for a reason. It would be lovely to know that reason right now, but I know I will look back at these years, just like looking back at these photos, and I will have that butterfly-ee feeling because I will finally get to see how each experience, wether good or bad, was just a trail up the mountain. And when I reach the summit, it will all be worth it.