Mommy truths

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Interstitial Cystitis: My Story

I guess it’s about time to tell the rest of my story… I have not updated in well over a year. I stopped updating because it was really the hardest moments of my life, and was barely surviving. In my last update post, we thought we had found the source of my pelvic pain. I was VERY wrong, I still had a long journey to go before that happened. Through the past two years I learned of many women that I have known my entire life… that have what I have! We don’t talk about it much because well, for some of them it’s an embarrassing issue I’m sure. But I still think it’s one that needs to be talked about so that more women can be diagnosed sooner than the usual 5 years or more it takes most to get diagnosed correctly.

Anyway, IT is called Interstitial Cystitis. It’s an evil disease, hard to detect, and pure hell for it’s victims. The non medical way of saying it, is that the lining of the bladder is missing, leaving acidic urine to burn the open flesh that is now their bladder. No one really knows what causes it. But it causes a few different side effects, and it’s quite different for each person. To name a few, it can cause urgency, frequency (some women go to the restroom 60+ times a DAY), and pain. My main symptom… severe pain.

It was March of 2012, and I woke up one day with pelvic pain. I had no idea that it would NEVER go away. I had no idea that I would see more doctors than I can remember, more surgeries than I can remember, that I would lose my womb for no reason, or spend countless nights in the fetal position crying, having no idea what was wrong with my body. I spent more sleepless hours than I can count scouring the internet, medical journals, mystery illnesses, reading blogs and finding so many other women asking the same questions.

I literally could not function more than going from my bed to my couch, bringing my heating pad with me and IPAD for research, spending my days attempting to play with my children from the couch but still looking for answers, doctors, whatever it would take to help me. I did finally find an amazing doctor who BELIEVED ME. In this horrible world of drug abusers, it has left those of us that are truly in pain, unable to get help. I’ve never been so thankful in my life to find this doctor, and to see my doctor every single month for the last year and a half, every month giving me her time, doing everything we could to keep me comfortable and to find the cause! Without her I don’t know where I’d be… I was diagnosed finally this past February.

They say this disease has the pain equivalent to a stage 4 cancer patient. I’ve never had cancer, but I can’t imagine greater pain that what I have, and I’ve given birth not medicated. It’s considered incurable, we are left to simply treat symptoms. A friend once told me she was shocked at this information, because although her friend had mentioned a couple times that she had IC, she never mentioned the horror of it. I was glad to have opened her eyes to be more supportive of this other girl’s pain. Just because you can’t see it, and we don’t show it, doesn’t mean it’s not hell.

I sit now, two and a half years since my first hints of pain, and I’m a completely different person. I often wonder why God would let his children go through life this way. I wish I could answer that, I am mostly clueless. But I HAVE learned a lot of things. I learned every day is a gift. Every memory made is a gift. People take for granted the painless lives they live, and its hard not to get mad when I see them take it for granted! I’d do anything to take a jog, or heck even a walk through the neighborhood without paying for it in extra pain for a week. People take health in general for granted, treating it like an invincible part of their life. I’ve also learned that people are judgmental. I was absolutely judgmental of people who “claimed” to have chronic pain, or headaches… I sincerely apologize. I will never say there aren’t pill seekers, because it is a massive problem in this world, but I will never judge first when someone says they have pain.

I even felt guilt about “natural living” blogging! I didn’t feel like I had the right write those things, while at the same time going to doctors every week and truly, now and maybe forever I can not live without pain medicine. The sad thing is I know people will judge, and think they would never take it, or would just fix what was wrong naturally. I’ve tried every natural thing I could find, even doing things most people in the world wouldn’t even consider! Natural is certainly my first choice, my Dr. probably gets annoyed because I question everything! But until you KNOW what pain feels like, pain at a 10 on the pain scale, every second of your life, you can not even fathom, and I guarantee every person would have to resort to pain medicine. However, I WILL blog about natural living, but modern medicine has saved my life at this point. It may even be harming my internal body in ways, but we only have this one life, and I choose to enjoy it with my children and husband until I find a cure. In this journey I have found the balance between natural and western medicine.

So, that’s what I wanted to share. I just want everyone to be aware of a couple things.

*If you have pelvic pain, whether it is your bladder (my pain was rib cage to thighs at times!) or not, message me and lets talk about it before you let a doctor talk you into a hysterectomy! Interstitial Cystitis is more common than you think! Men and women can have it, and most take 5 years or more to diagnose it correctly.

*If you know someone with IC, I guarantee they are smiling through the pain. Just be aware, and let them know that you care.

*Take care of your body!!! I know too many 30 year olds that are literally falling apart, having surgeries, on daily meds, or in pain. That is SO wrong! It’s MOSTLY our lifestyles that are killing us… and I do think that your lifestyle will make or break your quality of life, no matter what age you are. Some things are genetic, sure, but we need to take more responsibility.

And for those of you who have brought me through my personal hell… My selfless husband… and my children, mom and dad, sister, doctor, a friend with IC, and those who have not been present but have been praying, you have all shown me incredible love and care, and I appreciate every one of you more than you know. I still have a long way to go, but feel I have made it past the worst with your help.

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Thanks, Pharma. You created the “anti-vaccine movement”.

Here we go again!

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LA Times and the Whooping Cough story…

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Linton Family Christmas Card/Blog

Merry Christmas from the Linton Family! I meant to make my family Christmas card a tradition… I sent one out last year but I guess the tradition stopped there because I just didn’t get around to it this year. BUT thankfully I do have this blog and thought it would be fun to fill my friends and family in on how our year went!

Let’s start with my sweet kiddos. Alexa turned 9 this year and started the 4th grade! I asked her how her year went and she said she had two favorite things about this year. The first was that she started playing soccer. She got to be goalie half of the time and it was so fun watching her jump and slide to catch those soccer balls! I was quite impressed at how feisty my little girl was (she definitely got those skills from daddy!). She plans on playing again next year and hopefully making her first goal! Her second favorite thing was diamond mining in Arkansas on one of our family trips. I’m not sure if she was more excited at the possibility of finding a diamond or just getting to get muddy head to toe all day long! She is certainly an outdoor kind of girl!

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Kalin Jade, my super social 5 year old started Kindergarden this year. She flies through her work and will be reading very very soon! She just counted to a hundred last week and is quite proud of herself. She says she is the smartest person in the world… I love her honesty though, this girl will say anything and everything that comes to her mind! I asked her what her favorite thing was this year, and it was when we went to Sea World. We had planned on just going to Dallas for one of our trips, and when Kalin told me her life dream was to touch a dolphin, we just couldn’t resist making her dreams come true! We took the trip to Dallas, but also went even further down to San Antonio to Sea World. Our first stop was straight to the dolphins. We fed them and it was quite rushed, and it turned out we could only get one or two of us to pet a dolphin, and Kalin was unable to. We enjoyed the rest of the day but it was nagging on my heart that we had come all this way just for her to fulfill her dream and it hadn’t happened! So we went through the line again to feed the dolphins, and we did it!!! She fed the dolphin, got to pet it and we even got it on film! Success! It was my favorite moment of the whole trip as well. I also just have to mention, Kalin learned how to swim, which is a shock because before then… She wore about 4 different kinds of floaties if she was anywhere close to water!

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And then there is Adelyn Grace. She has truly turned from baby to big girl this year. She is two, and is definitely living up to the “terrible twos” at times! But her cuteness makes up for every naughty moment! Her very favorite thing in the world right now is jumping. We got her a trampoline that will fit in the house for Christmas and I seriously can’t wait to show her! She loves babies, playing with her sisters, painting, cooking… She HAS to watch Sid the Science Kid every single morning when we eat breakfast together. She also can play iPhone and iPad better than any other two year old I know! She takes hundreds of “selfies” pretty much every day. I love my spoiled little munchkin, she keeps us on our toes and I can’t wait to see what she has in store for us next year!

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Phillip and I have really enjoyed a blessed year with lots of impromptu traveling. We don’t usually go too far, but we love taking trips with the kids and enjoying their young years! Every trip is an adventure, and we love it. We also got our first boat this year and spent most of our summer on the lake. I learned to drive a boat and Phillip learned how to wake board… The kids tubed a lot and we built lots of campfires and just enjoyed the beautiful outdoors. Phillip had a pretty good hunting season with his new bow! Alexa got her first bow too, and can shoot really well! I am still enjoying being a stay at home mommy and teacher. I think I’ve gotten the hang of homeschooling! It’s so fulfilling to see Kalin learn to read and that I’m the one who taught her. Did I mention Adelyn can count to 3!? Haha, so proud!

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Next year we look forward to many things! January will be our TEN year anniversary! We already have our getaway planned! Who knows what else we will do, we usually don’t make big plans and just go wherever the wind takes us! There will be lots more soccer, gymnastics, and trips to wherever. Anyway, we hope everyone else enjoys their Christmas and the new year! Don’t forget to take time out for some impromptu family trips, make some dreams come true, or sit and watch a fire under the stars together. Life is sweet!

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