The Flare Before Christmas…

Hello Friends!

Just before Christmas we had an awful cold snap. I remember waking up that morning feeling incredibly stiff and dejected. I knew what was coming. It’s much easier to see the signs when you have been through something multiple times. Unfortunately, this particular flare was very painful. It reminded me of just before my diagnosis. It was such an awful feeling! I remember the feeling of complete dread knowing that I couldn’t stop it and that this could ruin my plans to go to see our VA family. Β (Thankfully, it did not!)

So how did I get through it?

*I made sure to take all of my meds every day.

*I ate my safe flare foods for three days straight so I could enjoy my Christmas meals that I had carefully planned.

*I took 1 tsp of baking soda with water to help with the acidity in foods. It tastes horrible, but it helps! (I have since added to more supplements to my regimen and I’ll be sharing soon about those!) If you are on a low sodium diet, this is not the answer for you!

*I also took Prelief with every meal.

*I didn’t remember to do them every day, but I tried to incorporate my stretches to strengthen my pelvic floor muscles.

* I used a heating pad before my stretches.

*I wore pj bottoms/leggings. (Loose clothing is best when in the throes of a flare!)

*I lowered my expectations and made sure to institute quiet time every day.

The last one was key for me. I had a few activities planned that I had to drop in order to feel up to the trip ahead of me. This has been difficult for me, but it honestly gets easier with time. It becomes so much more important to be fully invested in moments with family than using that time and energy to invest in activities that you have added to your list that (may be important), but are not necessarily more important than your quality time with those you love. This is something that I have to continue to practice because it’s very natural for me to want to go above and beyond for my family. I want to make everything special, but sometimes the special moments are made when we are just together. You can’t carefully orchestrate a special moment. It doesn’t work that way!

Another thing that I’ve learned from my experiences with IC is that there are many causes to flares and usually it’s hard to tell why. (If you can figure out what happened, that’s great! You may be able to use specific therapies to help shorten your flare time.) The best thing to do is do NOT panic. Stress can cause flares and it can also make flares worse. It’s a vicious cycle. So be aware! I hope these tips are helpful for my fellow IC warriors/sisters!

<3 Anna

Cystoscopy and Laparoscopy: Pre and Post Surgery Thoughts

Hi guys!

I’m finally blogging again! Post surgery was tough, but I’m getting stronger every day. I have an appointment with my Urologist on Wednesday and an appointment with my gynecologist next month. They should be able to explain things better and how we will move forward. πŸ™‚

Pre-Surgery Thoughts:

I was pretty nervous before surgery, for obvious reasons. I don’t know many people who enjoy being put to sleep, having zero control, and knowing you will wake up in pain. Pre-Op eased my mind some. I was able to watch a computer video on how a laparoscopy is done and then discuss the procedure with my doctor. She answered all of my questions and it just left me more than ready to get that thing done!

The evening before surgery, I prepped my hospital bag and purchased a larger size of leggings, a gown, fun socks, mints, and post surgery food and bottled water for my room.

Hospital day socks! :)

Hospital day socks! πŸ™‚

Post Surgery Thoughts:

After surgery, I felt fine. The meds were strong for this one! πŸ˜‰ The nurse gave me a few crackers and ginger ale to start and then she suggested peanut butter and graham crackers. They were amazing after not eating for several hours. Everything went crazy when the nurses helped me out of the bed to go to the restroom. I was bleeding and wouldn’t stop! There were 3 large blood clots in the toilet and after two visits to the restroom it wasn’t improving. The nurses were worried and called my doctor and she was very busy with another patient, so I was given to another doctor in the same office. She told me that it seemed that my cervix was nicked in surgery and that that I would need two stitches. I was furious. I cried, which probably made people think I was scared, but more than anything I just wanted to go home. The lap and cystoscopy were done…This wasn’t part of the deal. πŸ™ There wasn’t much time to discuss or think, because I had eaten there was a greater risk of me getting sick and having to stay in the hospital if I used anesthesia. So I opted out of that. I held my nurse’s hand and did some very lamaze like breathing to power through those two stitches. The stitches thankfully did the trick and after a little more monitoring I was able to go home around 1:00pm. (I had been at the hospital since 6 AM. ) John and I were both relieved to be able to pick up some lunch…Chic-fil-a for the win! And head home for some much needed rest.

cystoscopy2

This is my bladder. The top pics are before my bladder was filled. The bottom was when my bladder was filled to capacity. Apparently, compared to the normal 1, 000 mg. I can only hold 700 mg and that was what they could do. It could be much less than that on my own. :/ They did a biopsy on the very red part. I’m hoping I’ll get more info on Wednesday’s appointment.

The Verdict:

I have Interstitial Cystitis and Trigonitis. Trigonitis is inflammation on the bladder that is actually near the cervix. Apparently, these two are the cause of all of my pain during pms and menstruation. (I also just purchased some vitamins and supplements that I’m hoping will help with my hormone balance. (Every time I ask my doctor for help with it, she just suggests the pill and that has never been the solution for me. So here’s hoping this will work!) The Trigonitis is very similar to IC, but has different symptoms…fun times—I have both. :/ My Urologist treated it while he was in, but like IC you can treat Trigonitis, but there is no cure. It’s just very difficult to treat. Since surgery, I’ve had the typical good days and bad. I hope that my upcoming appointments will give me more answers and direction for what comes next!

Incision on belly button and one on my left pelvic bone area.

Incision on belly button and one on my left pelvic bone area.

It took me about 2 weeks to get back to some kind of normal. I was given painkillers, but they didn’t agree with me. The first was Vicodin and it made me wired. This was terrible because after surgery you really just want to sleep. Next up, was Tramadol. It worked fine the first night, but the next day I fell asleep and it caused my heart to hammer in my chest…umm..thanks but no thanks! So I ended up taking the max. dosage of Motrin and now I’m only taking it as needed. It was very difficult to power through the pain with less pain killers, but I was sick of all the unwanted side effects.

Beautiful flowers from my dear friend, Whit. <3

Beautiful flowers from my dear friend, Whit. <3

I’m so thankful for all my family and friends! The calls, texts, messages, flowers, and more…mean so much! All of the well wishes definitely helped me to push myself to keep going and to take each day in stride. I’m healing and getting back to my new normal. With chronic illness, there is always pain. A surgery can’t fix everything, but it can give answers and help us to know what our options are for helping me to live life more comfortably.

Before I leave you, I would like to share this link that was a super awesome help to me when getting out of and into bed. Check it out here!

What are your tips for recovering from a surgery? What helped you to get back on your feet? πŸ™‚

<3 Anna

Interstitial Cystitis Dietary Guidelines

Hello Friends!

Interstitial Cystitis

Since the month of September is Interstitial Cystitis Awareness Month, I thought that I would spend the next four Mondays sharing posts that are relevant to Interstitial Cystitis. (You can find even more information on our IG account and my FB page. ) This week I’ve been sharing dietary guidelines. Diet plays a very big role in decreasing discomfort and pain for those of us with IC. One thing you must know up front—What works for me, may not work for someone else with IC. (Interstitial Cystitis is a very individualized disease. This is one of many reasons it is so very difficult to diagnose!)

BEVERAGES:

Hydration is very important for everyone and that doesn’t change with this diagnosis. It does, however, make things a little tricky. This requires balancing hydration and frequent restroom visits which can be a major nuisance for everyone involved. Β I mostly drink water, Teeccino Dandelion Caramel Nut (morning treat now that I can’t have coffee), and hot/cold chamomile or peppermint teas. I sometimes get vanilla or caramel frappes at Starbucks and obviously have them made with just milk. I also drink almond/coconut milk with cereal and things like that. I absolutely CANNOT have caffeine, carbonated beverages, or alcoholic beverages. These send me into bladder spasms and pain for weeks/months. πŸ™ I also CANNOT have any citrus—so lemonade, orange juice are out as well. (I rarely do this, but when I do have orange juice—I get low acid and water it down a ton!)

FRUITS:

Fruits…it seems like an easy category, but it’s NOT! I’m very limited on what fruits I can actually eat. As I said above, citrus fruits are completely out. Bananas are safe for some people, but I’m not one of those people. :/ Right now, I’m able to eat blueberries, pears, and certain kinds of apples. I still need to experiment with melons to see if honeydew or watermelon would work for me. (Cantaloupe is usually not tolerated well. I have no idea why!) I also enjoy dates, raisins, and coconut without any issues. Coconut has definitely helped with making my limits not feel so unbearable!

VEGETABLES:

Vegetables are easier to fit into my diet. I can eat most anything and it has been fun to expand my horizons and try new things! The major no-nos for vegetables are tomatoes (which I know are considered a fruit…It’s just weird putting it in that category.), raw onions, chili peppers, anything pickled, and certain kinds of beans. Vegetables that I love are: sweet potatoes, bell peppers, broccoli, cauliflower, radishes, parsnips, asparagus, squash, zucchini, and okra. πŸ™‚ I really don’t feel too limited with vegetables. Sometimes it stinks that I can’t have tomatoes for a good sauce, but I’m learning to work around it.

MILK/DAIRY:

Since I’ve already discussed beverages, I’ll just skip on to food items. I can eat frozen yogurt, but not refrigerated. I’m not sure what the difference is. As far as cheeses go, I eat mozzarella, mild cheddar, and sometimes Parmesan. Heavily processed and spicy cheese are a no-go! Cottage and ricotta cheeses are also safe! πŸ™‚

CARBS/GRAINS:

I have found that gluten doesn’t do me any favors with my bladder, so I try to not eat it very often. I’m usually more relaxed about that when I’m out, but at home I’m (pretty) strictly gluten free! For example, when I’m out I’ll have a burger and usually take the top bun off…fewer calories (Not that I’m counting! ;)) and less gluten. Heavily processed breads, pastas, and cereals are bad news.

MEATS/FISH:

Meats are pretty flexible. I just need to avoid super processed and canned meats. I don’t enjoy those anyway, so it’s not a huge loss! I’m careful to get bacon that is free of nitrates and extra processing measures. I do the same for deli meat. I don’t eat deli meat too often, but I’m careful about what I buy and made this change before my diagnosis.

NUTS:

I typically eat almonds and cashews. Peanuts and most oils are also safe. Hazelnuts and pistachios are to be avoided and pecans are iffy for me.

SEASONINGS:

Garlic has become one of my new best friends for seasoning my food. Turmeric is also a great one! They both have tons of benefits as well! Big no-nos are ketchup (tomatoes again!), mustard, vinegar, soy sauce, any spicy seasonings/foods.

FOOD ADDITIVES:

Things I should avoid: ascorbic acid, MSG, aspartame (NutraSweet), saccharin, and foods containing preservatives, artificial ingredients/colors.

Any questions? The IC diet has definitely presented its challenges, but when pain comes into play…I try to play it safe most of the time. Sometimes I rebel and pay for it, but I’m only human. πŸ˜‰

<3 Anna

The Good, The Bad, The Ugly (August edition)

Hello Friends!

It’s time for another edition of The Good, The Bad, and The Ugly! The good news is that my list of good is so much bigger than the bad and ugly. I think that doing something like this really helps your mindset. You realize that you have so many more things to be grateful for!

The Good

pawpaw

August 1 was a bittersweet day for me. It is my grandmother’s birthday and the anniversary of my Paw Paw’s death. He passed away August 1, 2012. It was a precious time to watch Tom and Jerry with Declan and keep his memory alive.

brooklyn

Our beautiful niece, Brooklyn Naomi was born on August 5, 2016. <3

It was finally time for my urology appointment. (More on that in The Ugly.) So my news there was less than stellar, but I really like my new urologist and I feel like I’m in good hands.

johnsbig303

We celebrated John’s BIG 3-0 and our 8th wedding anniversary this month. <3

beachtrip4

Our beautiful niece, Abigail turned 4! I can’t believe it…This also means we are not too far from having a 4 year old in our household as well. :’)

We signed D up for Fall Soccer and his first music class. (Through KinderMusik)

As you can see, we have a lot to be thankful for and a lot of great moments this month! <3

The Bad

I have had moments this month where my pain was so intense. I had a horrible flare just before my urology appointment. I am forever grateful that I have a good urologist and he was able to prescribe me Uribel to help me get through it. It was so rough. :'(

This (obviously) has not helped with depression. I’m still fighting it out, but I have had some very blue moments and days.

The Ugly

Declan has had some MAJOR tantrums lately. I know he is growing and learning to express himself, but SON! The whining and shrieking needs to stop. Anyone want to loan me some earplugs? πŸ˜‰

The urologist agreed with Dr. Lovin, I’ll need to have a cystoscopy (A procedure where the doctor stretches your bladder) and laproscopy soon. Right now, we are looking at insurance (fun stuff!) to determine when the best time will be to schedule said surgery. I’m nervous/anxious to have it done, but I know I’m in good hands and God is always with me. This year is already jam packed with activity, so I’m thinking (right now) that the surgery will be in January, but nothing is on the calendar yet.

I honestly, just feel blessed to have a good list that is so much longer than the bad or ugly. I will press on and September will be awesome too! πŸ™‚

Share your Good, Bad, and Ugly moments for the month of August in the comments below! I always love hearing from my readers. You make my day! πŸ™‚

<3 Anna

IC has changed my mindset, but I’m still me.

Hello all!

Next month, is Interstitial Cystitis Awareness Month and it has me thinking about how much this diagnosis has touched my life. Many things have changed—not just the fact that I take medication and am on a more limited diet. That’s only the tip of the iceberg!

Depression is very common for people with chronic illness(es). This isn’t too shocking considering the every day pain and limitations. Despite these facts, we have to find a way to cope with this several years/lifetime challenge or we are setting ourselves up for a very negative life. No one wants that!

icribbon

IC has definitely changed my mindset, but I’m still me!

1) I’m learning to embrace the good days, because I never know how I’ll feel each day.Β 

Flares can come without warning and stick around for weeks-months! :'( This is teaching me to be more productive and intentional with my time.

2) I’m learning healthy ways to cope with negative thoughts and feelings.

It is so easy to just give into the negative! (A battle I continue to fight every day!) The best thing to do is to stirs thing up! Tackle a project that you’ve been meaning to finish, a diy project, read a book, whatever you can do to distract your mind from the negativity. You don’t have to give into the negative thoughts. YOU have a choice. <3

3) I’m learning to not feel guilty about my pain.

I did not ask for this. No one does! I can’t continue to beat myself up over a diagnosis that I didn’t ask for and you shouldn’t either!

4) I’m learning my limits. (Though I am really great at bending them too far!)

I can usually recognize what my limits are each day. Β I’ll be honest, sometimes I take things too far because I’m sick of limits and sometimes it’s just me thinking like the old Anna. I forget sometimes when I’m feeling “normal” that pushing too hard can result in a flare, exhaustion, both. :/ It’s a balancing act, for sure!

5) Self care is so important.

I think (especially) for mothers, It’s easy to think that our needs don’t matter. Once you become a parent, your needs go on the back burner and your kid is front and center. In some ways, this is only natural, but your needs matter too! If you don’t take care of yourself, you can’t give of yourself. Self care isn’t selfish. It’s smart! It’s the best you can do for yourself and for those around you. <3

This diagnosis wasn’t easy for me to accept. (No one enjoys being told that you have to change so many things in your life and so quickly!) As you can see, it hasn’t all been bad though. I’ve grown and become stronger because of these challenges thrown my way. I’m becoming a better person in spite of all of this and you can too! Β Don’t let whatever challenges stand in your path now, keep you from growing and becoming a better you. <3

Have you ever had an obstacle (such as a diagnosis) help you become stronger? What did this obstacle mean for you and how did you find the positives?

<3 Anna

Diagnosis: IC…What now?

Hello Friends!

Before you begin reading this post, you may wish to check out this one first! πŸ™‚ In that post, I discussed signs and symptoms for Interstitial Cystitis (IC) and how to get a diagnosis. Today I want to share with you all some wonderful resources to help if you are at the beginning of your IC journey. (I’m far from a veteran. I was diagnosed back in February and had symptoms begin in 2012.)

4 Great Resources

Once you are diagnosed, you will be bombarded with tons of information. It’s hard to sort thorough it, but below are a few resources that have been absolutely vital in keeping me positive on this journey. Check it out! It’s good to remember that knowledge is power. The more you know, the better you can cope!

IC Network and Shop

This website has tons of information and is a wonderful support for those suffering from IC and other similar conditions. The IC shop has a variety of helpful items. I’ve bought medical alert cards, special IC friendly candies, and more!

IC Optimist

This is a super informative quarterly magazine that is jam packed with the latest research, recipes and more! You can learn more about the magazine on The IC Network website.

ICN Food List

This app is so great! I can search a food and see which list it is on. There are three lists: Bladder Friendly Foods, Foods Worth Trying Cautiously, and Foods to Avoid. It especially helps when eating out! It’s nearly impossible to think of every ingredient and whether it’s safe off the top of my head. This makes things so much easier! I will say that it does not have every food on it, but it’s fairly close.

Nikki Cooks for IC

This is a wonderful blog for IC friendly recipes. She hasn’t updated since January 2015, but the recipes that are there are very tasty! I love the IC Friendly Nachos, salsa, and White Chocolate Brownies. Yum!

I hope that this list was helpful! Does anyone have any other websites or resources that they would add to the list?

<3 Anna

Do I have Interstitial Cystitis?

Hello everyone!

Ever since my diagnosis, it has been my desire to raise awareness for Interstitial Cystitis. This disease is incredibly difficult to diagnose. (It can take years! It was around 2 1/2 years for me.) If I can help educate and raise awareness, maybe I can make someone else’s diagnosis process easier!Β Today, I will share the signs, symptoms, and how you can seek a diagnosis.

Do I have Interstitial Cystitis-

Signs and Symptoms

Looking back, I can recognize signs/symptoms of IC around Declan’s second birthday. I noticed that I was struggling to urinate and I was having to go more often. Just before Christmas that year, I was diagnosed with a UTI. (Interstitial Cystitis is often misdiagnosed as a Urinary tract infection. Unfortunately, overuse of antibiotics only weakens your immune system and you become vulnerable to chronic illnesses, such as IC.)

The tell-tale signs/symptoms of IC are: (My additional comments in bold.)

Bladder pressure and pain as your bladder fills up.Β (You feel amazing relief after you pee, but it is very short lived. Read on to see why. :/)

Pain in your lower stomach, lower back, pelvis, or urethra.Β (Yes, to all of the above. My back pain is super present most of the time.)

For women-Pain in the vulva, vagina, or area behind vagina.Β 

For men-Pain the scrotum, testicles, penis, or the area behind the scrotum.

The need to pee often! (More than the typical 7-8 times daily!)Β (Yep, I’m thankful that cutting off fluids by 6pm has helped me tremendously!)

The feeling that you need to go right now, even though you just went.Β (This is so horribly unfair, but spot on.)

For women-Pain during sex.

For men-Pain during orgasm or after sex.

Are you experiencing any of these symptoms?

Please be sure to schedule an appointment with your primary care physician/gynecologist. They can help you rule out other possible causes: Urinary Tract Infection, Kidney Stones, etc.

So your doctor suspects Interstitial Cystitis, what now?

There are a few options that you should discuss with your doctor. (I had a potassium test done for my diagnosis and I wouldn’t recommend that route to anyone.) I say this because now I’m in the process of trying to schedule a cystoscopy with hydrodistention. I would recommend a cystoscopy because it will give you a complete picture of how bad your IC is and the best courses of treatment. It’s easy to feel intimidated and exhausted when you are seeking a diagnosis, but don’t let anyone talk you into doing something you do not want to do or do not believe is best in the long run.

If you found this post to be helpful, please share! I want this post to get to as many people as possible. I would love to keep others from having to wait years for a diagnosis.

<3 Anna

My Pitcher is Empty, but it will NOT go Dry!

Hello all!

Yesterday, marked a huge step in my IC journey. It took me a little over two years to be diagnosed. (I was diagnosed in February of this year.) Since February, I have been treating my IC symptoms with Aloe Vera, Pyridium (only during flares), Benadryl (when needed for allergies, (There has been a few studies done and there is a link between allergy sufferers and IC.) other supplements, essential oils, Tiger Balm, etc. Some of these things have helped me and others not so much. I went in to speak with my doctor about the pelvic ultrasound that didn’t happen (I was in so much pain that I couldn’t make it to the doctors office.) and better ways to combat this thing! We came to an agreement that the pelvic ultrasound needed to go on the back burner. (I’m so thankful for that. I am not looking forward to that day again. I’m glad it is in the more distant future.) I also made the decision before the appointment that if my doctor offered drugs, I would take them. This was a hard decision as well because I was really hoping that natural approaches would help, but so far they are not working well enough alone. It’s time to bring in the heavy hitters.

Mandy-Hale-Self-Care

So I now have a few medications that I’m on. I’m not happy about it, but I’m hopeful. It has been a discouraging and an exhausting time in my life. I want to pour into others, but I know that right now my pitcher is empty. There is a long road ahead to fill it up. I’m happy to be on that road now.

Today, please look at yourself. Are you eating well? Are you drinking enough water? Do you need a little sunshine in your world? Do what you can to take care of yourself. Autoimmune Diseases creep in without warning…If you neglect your body, it will turn on you. Take care of you, so you can take care of those around you. ***Self care is NOT Selfish!***

<3 Anna

TN Trip! (Pt. 1)

Hi guys!

I’m currently waiting on the nurse at my gynecologist’s office to return my call. It’s been a rough couple of days. I’ve been flaring all weekend (IC talk for bladder pain and tight muscles all weekend. :'( ) This one hit me particularly hard because I haven’t had one in so long. I have the usual day to day pain, but not the intense pain of a flare. It’s awful. I tell you all this for a few reasons. 1) I want to share my journey and experience with you all. 2) I want to raise awareness. I can count on my hand how many people I’ve met that know what Interstitial Cystitis is. I wasn’t aware of it myself until I began researching my symptoms and talking with doctors. 3) If you can’t vent on your blog, where can you vent?! 4) IC is very isolating at times. It can make you feel so alone when you have never met a person who suffers from it. I follow IG accounts and message boards and even though that is helpful…it’s not the same. I have family and friends who are as supportive as they can be, but I know it’s hard for people to understand. So if this reaches someone else who is feeling alone because of IC, Please know that you are not alone. There are so many others out there struggling with this disease and we should all reach out and support one another through the trials and victories. Hang in there! <3

So if you think about it, please pray that the new meds give me some relief. I have a trip this weekend with family and I would like to feel much better than I am currently. Speaking of family trips, I want to share with you some of our pics from our recent visit to TN.

Day 1:Β We left our home on that Thursday morning. We had three different vehicles all on different time schedules, so we planned to meet at the cabin some time after check in that day. On our first day, we stopped to check out the mountain views, grabbed some fro-yo, and checked out a waterfall.

TNTrip35

Selfie break!

TNTrip1

Sweet Frog, please! D chose Salted Caramel with M&Ms. πŸ˜‰

 

TNTrip2

I chose Cheesecake and added blueberries. Yum!

Total Tourist shot. ;)

Total Tourist shot. πŸ˜‰

Daddy helping D get a better look at the waterfall.

Daddy helping D get a better look at the waterfall.

TNTrip3

Friendly Falls

Day 2:

We went to lunch at the Old Mill Restaurant and spent the day at Ripley’s Aquarium. It was a very full fun day! πŸ™‚

Baby Karson checking out the fish.

Baby Karson checking out the fish.

I think they would have been perfectly happy looking at this first tank for awhile. ;)

I think they would have been perfectly happy looking at this first tank for awhile. πŸ˜‰

Chilling with the penguins.

Chilling with the penguins.

Penguin hugs!

Penguin hugs!

Starfish love! <3

Starfish love! <3

D loved the jellyfish.

D loved the jellyfish.

Stop by the blog tomorrow for the remainder of our TN vacation! You can check out even more pics on my FB and IG!Β Thanks for stopping by!

<3 Anna