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Disease and Illness

 
Nothing makes you feel more helpless than when you’re in pain or watching a child, spouse or parent suffering. How do you cope with illness in your family? Have you been diagnosed with a chronic disease? Have you survived a debilitating illness? Do you worry about world health epidemics affecting your family? Share your stories and support for others.
Comments
Replied By: vaughn72 on Jul 6, 2014, 2:20PM
I am trying to get back in to back in to the workshop they need something on paper saying I have Severe Intellectual Disability, for me to get back in to the workshops. I need to redo my paper work for them again. And this there rules not mine, I be honest I am unable to take care of myself at home .And For me to go back to the workshop I need the wheel chair back with the seat belt it is for their bus . Renee been helping me out with my personal care reason is I been having 35 seizures a day and I can’t afford the co pay is 100.00 for my seizures doctor. And I had been fallen in the bathtub from seizures. And I injured my back again at home the back pain won’t go away at all. I don’t have the co pay for DR Gubb .I am having trouble walking from my seizures and seeing double vision after my seizures. This much easier for me to write down what Is going on since I can’t talk much no more at all. My words don’t come out right no more there are times I struggle to talk    . And I was bitten from several ticks could have carried the Lyme disease from the deer ticks. But I was told Lyme disease it is hard to fine in the blood. Since I had been bitten having headaches, joint pain won’t go away and flu like. But I won’t be able to come in since I don’t drive any more at all. and millers is refusing me a wheel chair and a wheel chir ramp for the house.and I have always been meanlty handicapp since birth and looking for a changing table for my wife be to dress me and etc. be easiers on her back
 

 
Replied By: jphook27 on May 27, 2014, 4:49PM
Thank you Dr. Phil for creating this most helpful App! My family and I have used it several times!!! It's the same amount as our co-pay, and it's so nice to be able to get help without being exposed to other illnesses.
 
Replied By: survivebyfaith on May 4, 2014, 9:30PM - In reply to sweeneykitkat
I admit I didn't read your whole entry. The title was enough to catch my attention. I, too,was diagnosed with gastraporesis, in addition to my GERD(reflux). I struggled with keeping weight on, let alone gaining weight. I was on Reglan for over four years with very little effect. I could count on one hand items I could eat without getting sick. At one time I was down to 78 pounds. All that time I couldn't get over 90 pounds

During a hospitalization to replenish my electrolytes, my primary care physician I had for not quite a year suggested I try probiotics instead of Reglan. For awhile, I was on two Align and one Florastor every day. Almost immediately I noticed a dramatic change. For a year, I have been able to eat whatever I want. I take one probiotic a day.

Ask your doctor about trying a probiotic.

God bless,

Julie
 
Replied By: asrogers on Apr 4, 2014, 5:04PM
 

I have seizure condition. I am mother of three healthy children and I have been living with this condition with regular checkup with a neurologist through my adult life. The largest employer in my small town created a mock rehiring process to get rid of me upon learning that the employer provided health insurance would be expensive for me and the expenses of health insurance have been increasing. The mock process they have created was extremely cruel, discriminatory and it was watched by everybody in horror, but it was orchestrated by the university EEOC officer, who is the wife of a supreme court judge in our State. The attorney I asked to help, made an agreement with the employer in 2006 that the employer would not give out any information about me except for written request and even so just stating the start and end of my employment.

This agreement has been violated before it was signed, after it was signed, crisscrossed politicians, legislators, Town Police officers, health employers, professional circles – any area of my life. By this time this abuse, the isolation and the debilitating effect on my work  is causing more and more stress and it has deteriorating effect on my health.

 

I clearly cannot end this without help. What is happening to me is  an example of the social stigma attached to epilepsy, while it should not be this way, bcause I am an excellent teacher and I never had seizure in the presence of my students - in fact, before this abuse started I hardly ever had any seizure.

I need help to take up the violations of an employer with 10,000 workers against myself alone.  The agreement was never enforced, anybody who is disturbed by the excellent work I do against all odds is  
freely harrassing me.
 
On behalf of so many very talented, bright, ambitious seizure patients I need somebody to help us to stop the horrible stigma of this illness before the stress caused by these circumstances would take my life.
 
I have a lot to do offer   and I would like to be alive and offer it and stop an education institution from the violations of the agreement they have signed but never cared to follow.
In 2005 I have received the ...............institution Educator Recognition Award from the institution that ousted me and violationg the agreement and ridiculing my health condition instead of assisting me to do more for young people.


I need help from somebody! I have asked Dr Phil to help me, but so far I did not get help from the show.

If somebody could help - please, please help me!

Thank you        

 
 
Replied By: lakeeriestorm on Mar 6, 2014, 12:51PM
Yes, you read that title correctly. And yes, I'm going there! I'm going to talk about something that most women want to keep private because of the embarrassment involved.

I have searched and searched and then searched some more for any and all information I can get about this condition. Every article, blog, etc that I have found only talks about women who get vulvar varicosities during pregnancy and are lucky enough to have them just go away on their own. End of story. No big deal. The problem is, however, that is not the end of the story and they are a big deal for some women. A very big deal, in fact. Why are these few unfortunate women overlooked? I really don't know but I'm hoping I can change that.

Let me start by telling you my story:

When I was 17 I noticed a small lump on my labia. I kept it to myself because it's not really a subject I knew how to bring up in conversation! After graduating high school I moved out of town and got an apartment with my best friend. This new found freedom meant dating which almost always leads to sex. Being the responsible 18 year old that I was, I made an appointment at Planned Parenthood to have my first gynecological exam. The lump on my labia had gotten a little larger so I asked the doctor about it. What came next was quite terrifying for an 18 year old girl! The doctor said she was referring me to a gynecological oncologist. Now, I was not the most intelligent gal out there but I did know what an oncologist was and I was scared to death!

I asked my mom to go with me on the day of my appointment with the gynecological oncologist. As we sat in the waiting room surrounded by mostly elderly females, I grew more and more terrified at what I was going to find out and the waiting was pushing me over the edge. Finally it was my turn to see the doctor. Doctor Oakley was amazing! He made me feel comfortable and relaxed which almost made me forget why I was there. After the exam I sat there holding my breath waiting for the bad news.

Wait a minute! That wasn't the dreaded 'c' word I was expecting! It was something I not only wasn't expecting but also something I've never even heard of. Vulvar varicosities. So, was this good news? Dr. Oakley explained to me that I had varicose veins on my labia. Just like the kind you get on your legs. Because the lump was gradually getting bigger, Dr. Oakley suggested I have surgery to tie off and remove those faulty veins. This surgery would result in removing the part of my labia where the veins were – a partial vulvectomy. So, definitely better than cancer but not something a young 18 year old girl wants to have happen. I would be deformed. But cancer free so I was quite thankful.

The surgery was a little more involved than the doctor originally thought it would be. He ended up having to remove more faulty veins than expected but it went smoothly and I only had to spend one night at the hospital. The recovery was horribly painful and slow but I got through it and was thankful to be able to start my new life lump free and labia free.

Fast forward several years. I went through three pregnancies and with each one I got vulvar varicosities that did not go away after the pregnancy. Actually, the lumps just got bigger and more painful. It was actually so bad that I couldn't even wear a swimsuit because the lump was visible through the tight material. So, back to the doctor I go. Unfortunately, not only had I moved to a different town but Dr. Oakley had moved out of state. My obgyn referred me to a general surgeon who performed another partial vulvectomy, although there really wasn't much vulva left on that side! This time the doctor sent me home the same day as the surgery and my recovery was even more painful than the first time. I was bedridden for a couple weeks and just absolutely miserable. The pain medicine my doctor prescribed was useless and I spent a lot of time crying. I didn't think I would ever get through the pain but I eventually did and was anxious to look at my new body.

What I saw was horrifying! I looked like some kind of mutilated monster! It looked like the doctor used a chainsaw. Not only was my labia majora completely removed on the one side but my labia minora was also damaged. It had a shredded look to it. From that point on my appearance 'down there' became who I was. I was no longer feminine. I was grotesque. Sex with my husband only took place at night with all the lights off. I immediately covered up after showering or changing clothes. There was no way I was letting anyone see my deformity!

As the years went by my physical appearance became only one of the problems I was left with after the surgery. Because of the lack of 'padding,' wearing snug fitting clothing, especially jeans, became uncomfortable. Also, I was back to not being able to wear a swimsuit because of the extreme lopsided appearance. Sex also caused some discomfort.

That is when my search for labia reconstruction began as well as my search for other women who may be going through the same situation as me. To my surprise, I struck out with both searches. Sure there were plenty of plastic surgeons doing labiaplasty, but that was just for women needing minor repairs. I needed a whole new vulva!

I am not giving up my search for a surgeon who is willing and able to do the reconstructive surgery for me. And since I can't find a support group of other women with similar experiences I may just have to start my own. My hope is with this blog I can get the ball rolling on bringing together women willing to discuss their journey with vulvar varicosities.
 
Replied By: cashamarie on Mar 4, 2014, 7:48PM
Dear Dr. Phil and Jay, I think your "Doc App" is a wonderful tool from what I hear. However, you must have forgotten about people like me - POOR . Sadly, I can't use your app because I cannot afford an IPhone and do not foresee myself ever being able to afford one. I guess you forgot about those us who need your app the most - yes, those of us who are poor and can't even afford co-pays.
 
Replied By: sweeneykitkat on Feb 14, 2014, 10:54PM
My name is Jessica-Faye Watters and back in 2009 I was just an ordinary Canadian girl living in Ottawa, Ontario with my best friend. I attended college while working at my favorite movie theatre (was employee of the month May 2009, just 1 month after being hired). I was making the transition from Animation to possibly Scriptwriting after achieving a certificate in Pre-animation/Illustration; my dream being to at least release an on-line comic of the storyline my roomie and I had been developing the last several years. 1 year prior I had learned from some blood tests that I have a Hypothyroid and had began treatment for it. It was a little distressing to hear but also explained why I had been sick so often as a child, the condition weakening my immune system; however, I never could have predicted what the future had in store for me . . .
- Constant abdominal pain
- Constant Nausea
- Vomiting (inability to keep ANY food down)
- Low Potassium, Magnesium, & Iron
- Muscle aches and weakness
- Hypersensitivity
- Insomnia
- Dehydration
- Abdominal Bloating
- Stomach Distention
- Unintended Weight Loss of 120Lbs
Sadly the above list has been my life for the last 3 years, a diagnosis only being found 1 month ago. I suffer from a condition called "Gastro paresis". Simply explained, this is a disorder that slows or stops the movement of food from the stomach to the small intestine. Within our bodies is the vagus nerve that controls the muscles of the stomach that normally contract to break up food and move it through the gastrointestinal tract as well as the hormones and enzymes that helps us digest food. Gastroparesis occurs when that nerve becomes damaged by injury/illness and the stomach muscles cease to contract normally. This slows or all together stops movement of food from the stomach to the small intestine.
As mentioned earlier it all started late 2009; I had bronchitis as the winter weather came which carried on into November just as H1N1 (swine flu) broke out. With my thyroid condition and my body already weakened it wasn't too long until the swine flu became an issue as well. As others around me gradually got better my symptoms continued to worsen. My occasional fits of abdominal pain became a constant, like someone's elbow being pushed into me or a monster thrashing about inside, I can no longer eat without the pain increasing and spreading to my left side, joined by a tightening and pushing sensation literally forcing my food back up. This is sometimes accompanied with lots of acid, another dimension of pain revealed as my right side throbs heavily. This can even happen with water if I'm not careful. I feel the abdominal pain when I try to sleep, a spasm that feels like a monster inside tearing my innards up. I'm now on a constant pain patch to help keep the pain from completely incapacitating me and sending me to ER which has happened several times. I never knew I could hurt so much.
The worst ordeal was on July 13th during my 10 day hospitalization when I had to have a feeding tube inserted through my nose, bypassing my stomach and into my small intestine; the feedings were not staying in and I vomited a deep dark green. It was extremely painful which lead to a 7-9hr period of excruciating pain throughout my body. After being heavily medicated the pain slightly subsided. On July 15th it was discovered that the tube was no longer in my small intestine but up in my chest. It had to be removed immediately.
I've had numerous trips to ER for dehydration, and low potassium, once being told I couldn't leave the hospital because I could drop dead at any moment. I have lost approx. 120lbs, leaving my 5'7 figure gross and boney at the current weight at 88lbs. My bones and muscles ache, and I have hypersensitivity to touch and temperature. Some days I have just enough energy to do some stretches and light exercise; many days the pain and weakness make it impossible to even get out of bed. Almost every test imaginable was conducted to determine what could be causing all of this. A CT-scan in late 2010 showed the physical presentation of Superior Mesenteric Artery Syndrome, a rare life threatening disorder, though my doctors believe further testing dismissed the mechanical presentation. The diagnosis of Gastro paresis was finally found with a Gastric Emptying Study first performed November 2011 and again October 31st 2012. This was conducted by eating a single piece of toast and an egg treated with minimal radioactive material, then over the period of several hours images are taken to track how the food empties from the stomach into the small intestine. According to my report these are the average percentages compared to my results:
1 hr normal: 37-90% mine: 99%
2 hr normal: 30-60% mine : 88%
3 hr normal: 0-30% mine: 54%
4 hr normal: 0-10% mine: 44%
I was told by my Gastroenterologist that the motility has worsened since the last test.
I worry about malnutrition, infection and possible complications that could be developing such as my hypokalemia (low potassium). I desperately have fits of anxiety, I've heard of different treatment options but I have yet to find anyone who's 100% recovered and my electrolytes have grown so bad that the motility medications are now dangerous for my heart and have caused bad side effects, even resulting in trip to ER.
I try to have a normal life, though this condition has made it hard to make ends meet, taking me away from my schooling and job with rent, debt. medications and basic living requirements. I try to keep myself busy with my art. I'm constantly hungry, though the pain from eating can make me weary. I try desperately to get the weight back on so I bare through it; cooking is actually my passion so I bake and prepare fun, yummy meals for my friends and family. In the past some suspected bulimia and anorexia, which cut into me deeply. I was a proud, happy woman back in 2009. I've never measured the value of myself or others by weight. I have seen two psychiatrists who have completely ruled out eating disorders. I explained to them all of the emotional issues that have come hand and hand with this, such as insecurity being around others and nightmares and my first one explained how starving children he dealt with while he worked in the military experienced the same state and that once my condition progresses my emotions should return to normal.
I appreciate all of the love and support my family and friends give me. They do so much I cannot even begin to thank them enough. So many trips to ER, words of encouragement, shoulder to cry on and reasons to laugh, I would give them the world if I could and it still wouldn't be enough. If my own pain wasn't enough, I hate for my loved ones to have to suffer through this. After 4 years, of living in Limbo, I want to spread awareness for this dangerous condition. Had I known what Gatsro Paresis was sooner, perhaps I could have been strong enough for the motility medications to work. People are dying, literally starving to death; some of us are quite visible ill with tubes and scars, while others appear completely normal, their suffering invisible to the world. It took years before GP was finally diagnosed, so I did have to undergo thorough psych evaluation to rule out any possibilities of an eating disorder. From the bottom of my heart I WANT TO PUT WEIGHT ON! I MISS MY OLD SELF! When I gather the courage to look at my old photos I can see my old smile, the warmth in my eyes and I remember how great things had been. As time progresses through the photos I can see the exhaustion and pain showing through, in my eyes and body language. To look in a mirror now both scares and disgusts me. My bones stick out, there're bags under my eyes, I have the build of my 13 year old brother and my hair has thinned even more than it was before. My old life wasted away bit by bit as well as my femininity. It has been 100% ruled out by several professionals, and I myself have never lost the will to want to eat/gain weight, but there's always the suspicion hovering in the minds of those who don't understand. I hope more research will be aimed toward developing an effective treatment, not only for those of us who suffer now, but people who may be diagnosed later.

Thank you in advance for taking the time to read. Attached is the link to my story on CTV Ottawa last night as well as a breakdown of what I've undergone the last 4-5 years until finally arriving at my diagnosis:

CTV piece:
http://video.theloop.ca/home/watch/ottawa-womans-deadly-weight-loss/3177715892001/#.UvlB0piPLDe

MEDICAL HISTORY

---
2008
---

JUNE: Diagnosed with Hypothyroidism

---
2009
---

OCTOBER: Nausea and vomiting begins

NOVEMBER: Shortness of breath and chest pain added
Diagnosed with Bronchitis

DECEMBER: Diagnosed with H1N1

---
2010
---

JANUARY: Consultation with Dr. Keays
Bronchostomy diagnoses inflamed left lung
Ultrasound
Right Upper Abdominal Pain

MARCH: Diagnosed with dust mite allergy

APRIL: Upper Endoscopy

JULY: Low Iron levels

AUGUST: CT scan
Diagnosed with Diverticulosis

SEPTEMBER: Esophageal pH monitoring

DECEMBER: CT scan
Diagnosed with SMA syndrome

---
2011
---

JANUARY: Double Contrast Upper GI Series
SMA Syndrome ruled out

APRIL: Consultation with Dr. Fairfull-Smith

MAY: Consultation with Dr. Abaskharoun
Upper Endoscopy
Prescribed Tecta

JULY: Consultation with Dr. Mimeault

SEPTEMBER: Follow up with Dr. Abaskharoun
Unchanged by Tecta

OCTOBER: Elevated Cortical Levels

NOVEMBER: Ultrasound
Cushing's Syndrome ruled out

DECEMBER: Low Potassium Levels
1st Gastric Emptying Test

---
2012
---

JANUARY: Consultation with Dr. Bismil
Eating disorder ruled out
MRI

APRIL: ER Trip
Possibly diagnosed with Gastric Emptying Syndrome

MAY: Consultation with Dr. Lee
Colonoscopy
Meckel scan

JUNE: Consultation with Dietitian

JULY: NJ-Tube Recommended
10 Day Admission to Civic Hospital

SEPTEMBER: Colonic Transit Study (slow transit detected)

OCTOBER: 2nd Gastric Emptying Study (motility worse)
Diagnosed with Gastro Paresis
 
Replied By: brooke55 on Feb 1, 2014, 4:42AM
 
Ok here are my symptoms.. extremely bad bleeding from my but some small blood clots and pain in my but...boils on backof my tongue pressure on my bladder constantly hungry stomach swollen

I'm soo scared just whant to know what it might be and what to do plz tell me asap


All that blood cam out my butt at once what is going on should I
Go to the hospital..plz let me know
 
Replied By: jmrodriguez on Dec 1, 2013, 8:21PM - In reply to jmrodriguez
 
Dr. Phil, please take a look at my story and my pictures. I need help in a diagnosis for me and then to have my children checked. I have had 34 surgeries and I am 34 years old. I can guarantee I am very unique, I have been to many Universities and to some of the very best centers, including the Mayo Clinic in Rochester, MN. I cannot afford on my own anymore of the testing, travelling ect.. I already spent our savings in searching for answers. My body is changing and I know its not for the best. Please help if you can, I could really use the help. Thank you and god bless!
 
Replied By: jmrodriguez on Dec 1, 2013, 8:16PM
I have been asked multiple times by many people to write a book of what I have gone through over the years , while dealing with what I call a "medical mystery". I would not even know where to begin, and can only imagine how long it would take. So I will give you all a little bit of my story. When I was young, maybe around the age of 7, I noticed on the top portion of my right foot that my skin was very different. I was able to pull on it and stretch it out like play dough, sort of like nylons, the skin was very thin. I thought it was pretty cool, who else could do this to there skin, I would wonder. As I recall, it began with my skin changing and spreading around my entire right leg, and then I started to have a lot of weakness in that leg. I was not able to fully keep up with my peers growing up, my leg always hurt and felt so weak, I knew I was a little different then others. Over many years, my parents took me to several Doctor visits, many specialists and I am sure that I had countless tests done, I remember feeling like I was always a guinea pig. As I got older, my skin really changed on my right leg, it became very thin, translucent, and discolored, and always ached. During school, the kids would ask me at times, what is wrong with your leg, and of course I was embarrassed, but I would always try not to show it, and would just let them pull on my skin and sort of make a joke out of it, that way nobody ever knew how I really felt about it. Come on, I hated my leg, I wished all the time that I could have a new one and thought it would just go away, but that was not going to happen, in reality. It was , and is my leg, so I learned to live with it. While still attending "assumptions, or guesses". Around the age of 14, I noticed my skin was changing, turning red and bluish, and very discolored around my chest area. After the discoloration of the skin, it started to get very thin, translucent, and painful. It was like the skin on my right leg, it had spread to my chest. Still visit after visit, there are no answers or explanations to why and what is causing these changes. Not fun, during your teenage years for this to be happening, Why me, is what I would wonder. At 18 years old, I became pregnant with my first son, Carlos. I had a good pregnancy for the most part, delivered a healthy and cute baby, could not have been any happier. After the pregnancy I began to notice that instead of my right leg being smaller then the left as usual, it was swelling up a lot and giving me a great deal of pain daily. Still visit after visit, no reason to why this was going on. I soon became pregnant with my second son, Anthony, and it was a good pregnancy as well, I had another healthy baby boy. After the birth of Anthony, I had a tubal ligation as the doctors, myself and my husband thought would be best, due to my medical problems. After my tubal ligation I had another surgery, that I thought went as planned, however a few days after I was discharged I ended up returning to the E.R. department, I had a major complication following the surgery (will not name the surgery, due to being personal). I am going to jump ahead, so in my mid 20's my leg got worse, way worse, it would swell up so bad that the skin would tear open and leak lymph fluid. Sometimes I would even have to cut my jean off just to get undressed. At this point it was almost impossible to wear a shoe on my foot. I was hospitalized so many times that I can not even count anymore to due getting infections in my leg. It was so terribly painful and embarrassing. Finally after many visits I was diagnosed with chronic lymphedema. At least I had an answer, but they could never give me a reason why or what caused me have the lymphedema. Years of dealing with the severe, and I mean severe swelling, and the pain was horrible, but I did not have a choice, it is my leg and I needed it. Eventually it led me to having an amputation of toes 3,4, and 5, around 5 years ago. It was a tough decision, but the pain that I was feeling was so bad and miserable that I new I had to make the tough decision, better my toes then my leg, I would think. The surgery went as planned, I remember the first time they unwrapped the bandaging I could not even look, I was terrified. One morning while in the hospital I looked at my foot when nobody was in my room and cried. A few days after the amputation, I woke up in the hospital and decided to take a shower, so I took a shower, got back in bed and had breakfast. That is the last thing I remember, before waking up and the nurses asking me what my name was, did I know where I was and the current year. I also remember my family looking at me, and I could not figure out why everyone was starring at me. Soon I found out that the nurses came into my room to check on me and she found me blue and unconscious. My oxygen level had dropped to 31, very dangerous so they ran test after test, but there was no explanation to explain why this happened. That was a very scary and emotional to go through, but I made it through the surgery and healed after a few months. About a year later, I had a visit at OHSU and they sent me to a vascular anomalies clinical visit, where I saw multiple providers at a time, to see if they could determine what was wrong with me. They ordered a lot of tests to be done and finally found out that I had a very extensive arterio vascular malformation (An Arterio-Venous Malformation, or AVM, is an abnormal collection of blood vessels. Normally, oxygenated blood is pumped by the heart through branching tubes called arteries to the brain, where it enters a fine network of tiny vessels called capillaries. It is in these capillary beds where the blood nourishes the tissues. The used (deoxygenated) blood then passes back to the heart through branching thin walled tubes called veins. Arterial-Venous Malformations are areas that lack the tiny capillaries. The location of the connection between the artery and the vein is called the shunt. The area of tissue is called a nidus of the AVM. An AVM can be thought of as a "Short Circuit" where the blood does not go to the tissues but is pumped through the shunt and back to the heart without ever giving nutrients to the tissues. Due to the severity of my malformation, the doctors at OHSU had referred me to a specialist in Denver, Colorado by the name of Dr.Yakes. So I travelled to Denver several times and had back to back surgeries done, typically three in a row, due to the cost of travelling I could not go back and forth from Washington to Denver as often as needed for the surgeries on my AVM. Finally, a doctor at OHSU was trained on the surgical procedures and I now see him to do my surgeries. I have had I believe 17 surgeries on the AVM as of today. I will always need the surgeries every few months to correct the AVM, it will never go away or get heal. However these surgeries have improved the size of my leg, I can now fit in a shoe most of the time, and my leg does not swell up so bad anymore, but I still have my good and bad days. I am so grateful for these procedures, even though they caused multiple ulcers, pain and infections, I have seen an improvement for the first time in years. Three years ago I had a major surgery, Gastric Bypass, I went to the University Of Washington for the surgery. Two days after surgery, I had a major complication arise, I ended up in ICU for a week. I has an upper GI bleed, it was the most embarrassing moment in my life, so horrible. I had a very large amount of blood transfusions. I remember clearly each time I would bleed out, I would look at my husband or the nurse in the room and say, "hear it goes again", and I would pass out from the amount of blood loss. Then I would come back around, this happened so many times, it was a terrible feeling. During the last episode in which I bleed out, I remember my husband asking me "who are you talking to"? I was talking outloud and I remember there were three angles in sattin looking gowns looking down at me, and I was telling them, I was not ready to go, that my kids needed me". That was one moment I would never forgot, I never gave up, even though it was so very hard not to. I still cry today in regards to that moment. The doctors took me back in to procedures and surgery and never determined why this had happened or what caused the upper GI bleed. It has been three years since that surgery and I have lost a great amount of weight which helped a lot. I have continued with my surgeries as need on my AVM. I also has a few surgeries to remove some of the thin skin around my chest so I would not get any infections. I had my gall bladder removed as well. Everything was going all right for the most part. In May of 2013 I started having some very intense pain in my stomach and back, which led me to go to the E.R. I was then rushed by ambulance to a larger hospital to a surgeon who was ready to do an emergency surgery. I had twisted bowles, perforation of my bowles and an internal hernia. I made it through the surgery, had a lot of pain and soon was discharged from the hospital. After the healing process all was good for a few months until the end of September when I had to call 911 for an ambualnce. I was having the same type of pain, and again had another emergency sugery for twisted bowles and hernia repair. This was miserable two major surgeries within 5 moths of eachother for the same thing, How could this happen to me or to anyone? The surgeon informed me that my intestines are very fragile, loosing the collagen, sorta like how my leg and chest has lost the collagen. He also informed me that I have several DVT's in the mesentetic and portal veins, which is very rare. So I have been put on blood thinner medications for life. I recently had some blood drawn for testing and it came back positive for a rare mutation called Homozygote MTHFR C667T, which is a bood disorder causing my blood to clot quickly and easily, making me a very high risk for blood clots, strokes, heart attack, ect. I always say and think, "could it be any rarer"? The pain has increased rapidly around my chest and back, in the area where the skin is so very thin lately. I have terrible headaches, strange muscle contraction pains in my stomach, pain near my chest, and many more symptoms, but I still remain positve after having around 33 surgeries so far, and being told I have chronic Lymphedema, Klippel Trenaunay Weber Syndrome, Ehlers Danlos Syndrome, and a rare gene mutation. I know that I am very unique, and my medical problems are extremely rare, but I always stay and think positive. I still dont have very many answers or reasons, I am just always told its so rare and unique, and that I just need to find the right person which may lead me to tanswers. The doctors have given me many diagnosis over the years, however one doctor never agrees with the thoughts of another, they all say something different, and I know that is just because they truly dont know what is going on with me. I need answers and I need them now, I know my body and things are really changing, I can feel the difference and it is deffinetly not a good feeling. I will always stay strong and think positive thoughts and I will not give up until I get answers. There is always hope, if you believe.
 
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