Tamarra's fight for her life

$16,385 of $50,000 goal

Raised by 128 people in 27 months
Last year a campaign was started to get Tamarra to the Cleveland Clinic for her rare SMA which was the only clinic in the country that may have an answer. We were able to raise $47,740 to help her and Bryan get her there and help with some other medical bills. I have closed that page to start this new fight.

Surgery after surgery there have been no answers for Tamarra. Cleveland was able to do some re-routing of organs and it was unfortunately a temporary fix. Now trying to gain weight and keep nutrition in her body, Tamarra is still in the fight for her life because that is what she does, fight. 


The next step is to get her to a hospital that Bryan found that will put her in a coma and try to get her body nutrition that way. Sounds extreme, well it is. It is also very costly.  I know you have given with all of your hearts, your dollars, and your prayers. But this is what Tamarra and Bryan feel are the next best steps in keeping her alive and kicking (FYI no coincidence I just heard the song Alive and Kicking as I post this)! 

Here is the most recent post from Tamarra (8.20.16): "This is a rare share for me, the look of full blown gastroparesis with diverticulitis on the side. ED's love to ask, rate your pain and what does it feel like.. "Um, an 8 and as if someone has a balloon with spikes and razors and is blowing it up" but they don't like that. In this pic you will also see my heart monitor (yes that to is making my life that much harder) my posts are not for sympathy, my posts are for awareness, awareness of illnesses that the naked eye can not see and I am the only one who can feel them. Today, I'm fighting and it's the hardest battle I've had in a long time. The pressure, the fear, the pain, the rapid heart rates, the blood pressure, the inability to work threw it. I know I have a lot of people praying and keeping me in your thoughts and tho I feel some days I just want to scream and yell and beg why, I don't. I fight my thoughts, I fight my body and I fight my meds (I hate them) Bryan tries so hard to help but even he doesn't know how, he quietly sit and tickles my back, arms and legs as I bawl and roll around in this pain that seems to channel my inner Freddy Kruger, the monster which has chosen my body to live in. You can't always be positive (even when people say "you're so positive and strong") I hide it. Inside I'm terrified, I hurt, I beg for answers as to why me.. I know one day we will know "why" but today, I am weak, today I can not find comfort, today I want to go to sleep and sleep the whole night"




If you can share this... continue to pass it along hopefully these new funds can be on their way to being raised to help this amazing family.
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It has been a minute since there has been an update on Tamarra's fight. This is from Tamarra this morning:

A few months ago I called my doctor and told her somethings wrong and I believe I needed a GI series done. She ordered one and blood work. The GI scan showed I have a full centimeter of stomach up in my diaphragm leaving just 1/2 cm of stomach left. Found the left side of my intestines (I have split intestines trying to keep my SMA under control) were not working. Any time anything went that way my body would try to push it the other way. The best way to help that is I have to lay down to try and thin whatever’s not moving to hopefully get it thin enough to just slide down or get it to go to the other side. The test also showed my nissen has become unwrapped...again... that being unwrapped causes my dysphagia to go into hyper drive where I choke any time I swallow solid or thick consistency. It showed my esophagus is now at 60% instead of the 80% it was in February.
Surgery is in the future.
After the scan I had an upper scope to see what my surgeon can do to try and postpone surgery. My esophagus opening was at an ‘8’ (that is the size of a small straw) he dilated me to a ‘18’ which made me happy because that means I can eat again. Haha. It’s the small wins I’ll take. I do need surgery to try and salvage my stomach and have another nissen but since I’ve had 3 this year my surgeon is trying to wait til next year.
I’m here to tell you, my body has its own time frame.
Blood work came back as well, I’m anemic, severely dehydrated, dangerous low levels on iron, b12 and d3 along with other things blood likes to show (I remember these 3 because I have to do infusions because of them haha) I get iron infusions weekly, a b12 shot weekly and have to take D3 daily. I’m in pain daily. Eating is very scary, I’m afraid of the body repression’s I receive. I constantly look pregnant and hate it. My heart is over working which causes its own types of side effects. At some point if I can get myself steady enough my cardiologist will burn the Vegas nerve in hopes to stop these spikes that go above 150 for no reason.

Finding the strength and motivation to keep doing this is really hard and so very frustrating. I feel a lot of guilt for being sick and definitely not “jolly”. I hide a lot especially when visually I know I can’t hide. True tests for me are how hard I have to focus and take the time to breath through stressful times or I’ll end up in the ER. Sometimes I do not have time to get my meds so curling up is the better option I suppose. lol. I cannot take showers unless someone is home, my heart rate and blood pressures spike to high which could cause me to pass out. The way I can describe what I feel daily is that theirs a volcano by my bellybutton which the lava flows up to my throat met by a “lump” (you know that lump feeling before you cry? That’s the lump I’m talking about) once it hits that lump I get signals that I’m choking. I either cry, cough, cough till I cry or drink... a lot... (and no not alcohol lol). I’ll tell you my current emotional hardship that I cannot over come.. I get hives.. everywhere.. I feel like a monkey constantly scratching my belly and face.. I feel like I look like I have the chickenpox or something else, maybe this is when people can see I’m “sick”. Just kidding those people give me weird looks like I have the plague. Yes, people suck. My body denies the bodies natural pain reliever which causes the hives. Frustrating is an understatement.
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From Tamarra today:
This is just a slight glimpse of my last 4 weeks.. I take a lot of sideline photos do to my inability to physically do much. If it was easy I would have no purpose to raise awareness. Awareness that I am sick and what I have is incurable, awareness that even though I am sick (a lot) life still goes on and I do what I can, awareness that nobody should ever be alone and when you're fighting a battle choose your warriors. I've been knocked down hard these last months and have even lost friends because of it. Everyone makes sacrifices, I just hope those who do them choose to see the positive. I'm no optimist but I do enjoy laughing, spending time with my close group and feeling the genuine care and concern. Life is hard, i was never taught it was easy, life hits you but dust yourself off and get up. I'm no angel or devil, I am me.. I hide nothing about me.. I never look for sympathy, I don't need it.. this last month I've had to stop working, that has been my hardest obstacle. Harder than having allergies to everything, harder than being stuck every 5 days, more painful than my blood clots, saddened I cannot beat my own stubbornness. I speak about being sick to raise awareness about my illnesses, and try to show that even though I cannot do much, I do my best to make sure my family and friends know how much I love, care and appreciate them.. How deeply grateful I am for everything everyone has done or said.. This is not a post about losing, this is a post about awareness and no matter the trial you can ALWAYS smile! #awareness #gidisease #smasyndrome #gastroparisis #divercuticulitis #esophogealdisease
The picc line into Tamarra's chest
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Hello Everyone! Jessica here. It's been a minute for an update, because this is the longest Tamarra has gone into a year without having a major surgery. However, yesterday WAS major.

This is from Bryan yesterday: We got the news last month that Tamarra 's entire GI tract is dead. No movement, no blood flow... Nothing. This means even the feeding tube won't do any good. So while they try and figure out options, she's getting a TPN line which will deliver nutrition directly to her blood line. This comes with 12 hour a day feedings and a host of new issues- infection, monitoring blood sugar levels, and very scary potential risks, but still she fights on. Waiting to go into surgery for placement now and hopefully will go home this afternoon. If your so inclined, throw up a prayer, a virtual high five or just a positive thought to the universe on her behalf. Be grateful for every moment because you never know how they're measured.

Thank you everyone for your continued support for this amazing family. Hopefully this helps to ease a little of the financial burden.
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Tamarra has started a blog to talk about her illness and what she goes through every day. We still have a long way to go.

http://livingwiththeincurable.blogspot.com/
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$16,385 of $50,000 goal

Raised by 128 people in 27 months
Created August 25, 2016
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$100
Anonymous
11 days ago
1
1
$10
Tanya Deneen Street
11 days ago
1
1

My heart goes out to Tamarra for being so strong in the face of SO MUCH physical and emotional difficulties! You are a WARRIOR and even though it may not seem like it...God is sustaining you! I'm continuing to pray for a complete restoration of health and return to a normal life void of doctors, medicines, test and surgeries. But mostly fun times and love with family. You inspire many who may be dealing with health issues and show them how to smile through the pain! Much love to you and Bryan! :)

LU
$100
Lori Urrutia
4 months ago

We love you!

$25
Anonymous
4 months ago
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