Can You Hear Me?

Hi!

My name is Kimberly.
A little bit about me: At 43, I decided to go back to school and attended design classes for interior design. Ironically, my favorite projects became refurbishing and bringing new life to dining room tables, as they hold so much laughter and dear memories. I have a special love of giraffes (did you know they can stand and run within a few hours of being born?) #giraffestrong. I drive my husband nuts with how many we have. I’m married to a wonderful man, David, who has been my rock every step of the way. He has two children, Kennedy and Patrick, whom I adore. I have a wonderful son, Manny, who has always been my light, whom I brought up as a single mom when his dad passed away at a very young age. Together, we have a wonderful blended family. And? I am a proud Grandmother!
In 2018, I embarked on running the Boston Marathon, notorious for being one of the worst marathons on record due to the weather. I ran and raised money in honor of first responders. Throughout months of training, I faced physical challenges, but my determination and commitment kept me going. I have never been one to give up on a cause I believe in. On April 16, 2018, I crossed the finish line with two battered knees, failing health (which I didn’t know at that time), and in freezing temperatures (in the 30s, with a 29-degree wind chill, 30 mph wind, and 100% rain). I did it! (That's me crossing the finish ! )
Two weeks later, I started to become extremely ill. I was admitted to the hospital multiple times, including over 60 times to the ER and twice in the ICU. Doctors could not figure out what was wrong. Boston is fortunately the hub for so many severe health issues, but unfortunately, doesn’t know much about these particular rare compression disorders. The next several years were followed by multiple surgeries for a handful of rare disorders and I had a feeding tube placed, which elevated to a PICC line placed (it’s a line that goes directly to my heart; it delivers all my nutrition) and a PEG tube put into my stomach that drains my bile. I’ve had them for the past year and four months (it’s my life support). I completely lost the ability to eat and drink anything except water.
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By the grace of God, I’m still here, and I won’t stop fighting!
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Romans 5:3-5, : "Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.".
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click HERE to learn about RARE DISORDERS


Rare Disorders
Superior Mesenteric Artery Syndrome
[WebMD]: Superior mesenteric artery (SMA) syndrome is a condition that affects the duodenum — the section of the small intestine that joins the stomach. The syndrome is caused by the compressing of the duodenum by the aorta and the superior mesenteric artery (SMA). The superior mesenteric artery is one of the major arteries from the aorta (your body’s main artery). The main artery is pretty muscular and may hinder food movement through the small intestine.
In SMA the duodenum may get compressed by the arteries, preventing movement of food through the small intestine. That causes bowel obstruction that widens and damages the duodenum. This is a very rare condition of the gastrointestinal system.
Teens and young adults are most commonly affected by this syndrome, and women are likelier than men to have it.
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Nutcracker Syndrome:
[ClevelandClinic] Nutcracker syndrome is a condition that affects your left renal vein. This is the vein that carries blood away from your left kidney and back to your heart. Nutcracker syndrome is a type of extrinsic vein compression syndrome. In these syndromes, the structure of your blood vessels puts pressure on one of your veins.
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If you have nutcracker syndrome, two arteries in your belly compress part of your left renal vein. This compression raises the blood pressure in your renal vein and forces some blood to flow in the wrong direction. As a result, nearby veins swell, causing symptoms and potentially leading to complications.
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Gastroparesis:
[MayoClinic] Gastroparesis is a condition in which the muscles in the stomach don't move food as they should for it to be digested.
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Most often, muscles contract to send food through the digestive tract. But with gastroparesis, the stomach's movement, called motility, slows or doesn't work at all. This keeps the stomach from emptying well.
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Pelvic Congestion Syndrome:
[ClevelandClinic] Pelvic congestion syndrome — also called pelvic venous insufficiency — is a chronic pain condition associated with blood flow problems in your pelvic veins. “Chronic” means pain lasting longer than 6 months that isn’t associated with either your menstrual cycle or pregnancy.
The pelvic pain associated with PCS often involves faulty veins in your ovaries and pelvis. The veins dilate (widen) and may become twisted and overfilled with blood. As a result, blood may pool in your pelvis and feel painful.
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Mast Cell Activation Syndrome
[ClevelandClinic] Mast cell activation syndrome (MCAS) is when you have unexplained episodes of severe symptoms like swelling, diarrhea, vomiting, flushing and itching. Unlike allergies, which happen when you eat a certain food or touch something you react to, MCAS episodes happen without a clear trigger.
In some cases, mast cell activation can cause anaphylaxis, a severe allergic condition that can be life-threatening. It can cause you to have trouble breathing and drop your blood pressure to dangerously low levels.
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Mast cells are a type of immune cells responsible for immune reactions. While it can be scary to have mysterious symptoms and want answers, activation of mast cells is common. For instance, conditions like allergic rhinitis and asthma, allergic reactions (like anaphylaxis to drugs or food) and mastocytosis all activate mast cells. This causes them to release proteins that give you symptoms that are bothersome at best, and dangerous at worst. Other common conditions can also cause unexplained symptoms.
Median Arcuate Ligament Syndrome
[MayoClinic] Median arcuate ligament syndrome, also called MALS, happens when the band of tissue in the upper belly area presses on the artery that sends blood to the stomach, spleen and liver. This tissue is called the median arcuate ligament. The artery is called the celiac artery.
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The median arcuate ligament creates a pathway between the chest and belly area for the body's main blood vessel, called the aorta. Typically, the ligament goes across the aorta. The celiac artery sits just below the arch.
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But sometimes, the ligament or arteries may be out of place. The ligament may put pressure on the celiac artery and the network of surrounding nerves, called the celiac plexus. This pressure can cause the symptoms of MALS. The condition can cause serious stomach pain in some people.
MALS can occur in anyone, even children. Other names for MALS are:
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Celiac artery compression syndrome.
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Celiac axis syndrome.
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Dunbar syndrome.
Treatment involves surgery to release pressure from the ligament on the artery and nerves.

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