Posted by: hockeygrl1 | October 25, 2014

The Ride

What is it about life? How it hands you all these twists and turns and makes you feel like you’re riding a roller coaster and you’re unable to get off. The more you try to get off, the faster the twists and turns come at you. You feel like it will never end. I mean, will it end?

Is there a way to get off? Or to at least have the twists and turns slow down so you can catch your breath. Catch your breath and have some joy in your life because it’s not a fun ride on this roller coaster. It takes all your strength to not cry and to steel yourself to continue on this ride that is beyond your control.

You put on an act so no one knows what you are really feeling. So they can’t see your pain. You’re screaming and no one is hearing you. So you continue to ride and hope it will stop.

“Follow your dream no matter what.” – Jared Leto

This quote has been bothering me for some time. I mean, how can you follow your dreams when you’re stuck on this roller coaster called lupus? Do I just stop dreaming? Do my dreams have to change now? Does my life need to continue to be on hold while I grow older and battle this disease? Is there a way to still be able to follow my dreams?

While I’m on this roller coaster others are continuing to live. I’m falling behind, far behind and in order to catch up I need to get off this roller coaster, but every time I see an exit the door is slammed in my face and the ride begins again.

Round and round I go. This medication to treat this and that medication to treat that. Countless doctor’s appointments and needle pokes. The pharmacists, lab technicians and receptionists know me by name. They’re friendly faces amongst the other riders of this roller coaster. Those riders get to leave. I try to follow but cannot undo my seatbelt.

Everything has a cost. This horrible ride is not free. Each medication has its own consequence and these consequences are further hills and valleys on the roller coaster. I feel that people are starting to hold these against me. I feel life is one giant side-effect and the twists and turns of these side-effects make me sick.

It’s not just the side-effects. It’s the toxicity of the pretty pills they supply me with. This is just another curve in the tracks. To treat the disease I need to take medications that kill other things in my body. Other things go wacky just like this wacky ride but these things are considered minor compared with the other option, falling off the tracks at full speed.

Continuing to ride I notice people looking at me differently. Hell, I look at myself differently. Some parts of me I don’t even want to look at at all. The ride has changed me again and it’s not what I wanted or expected and it’s put a damper on any sex life I thought I’d ever have again. The roller coaster speeds up and I’m on it alone once again on a Friday night.

I’m riding this ride that no one can understand. They try to, but can never fully join me on this crazy ride. Friends pop in and out of my life. They can’t handle the ride. The thought of staying on this ride forever makes them stay away, distant and unable to communicate with me.

People are lost; those that can’t handle my illness. My heart is broken by a man that said he loves me. The ride was too much for him. I wonder if I’ll ever find love again.  I have lost the feeling of my heart in my stomach that happens when you go down a hill permanently to protect myself from being hurt again.

I have begun to wonder if the disease or the roller coaster ride are making me sick. Continuing to battle becomes hard. Looking for a way off consumes me. Trying everything until I just throw my hands up in the air and surrender to the ride believing it will never end.

Falling in to the deepest dip in the tracks I feel like I cannot go on. Laying down in the roller coaster car is all that is possible. Tears are running down my cheeks and I cannot do anything to stop them. There’s nothing good or happy in my life. I wonder where I can find the strength to go on because this ride is happening whether I want to take it or not. The fact that I have no choice is killing me.

This ride has also hurt me financially. I think back to the days when I had a career and made money that supported me and my children. I end up on a ride within a ride when dealing with social security. Applying and getting SSDI has many twists and turns and low dips. I’m on the ride with SSDI for a year. While fighting this battle I have lost other battles and my house and have to deal with a low dip and turn and move into my parents’ basement. The pain from this is so great that I feel I will never recover. It adds to my loneliness because who wants someone that lives with their parents.

Dreams…. How can I even have dreams anymore? This ride has taken them away. It’s not like I haven’t dealt with this before. I guess that I was never strong enough to follow them anyhow. Starting at 18 is one thing, starting at 42 and on this ride called lupus is another.

Dreams… The ride goes on as I focus on the past. It was all about making everyone happy; doing what was right. There was no encouragement to do what I really wanted, not that that’s a valid excuse.

“Follow your dreams no matter what.” Did he consider people that are ill and their dreams have changed. No not changed. They still have those dreams but are now on a different roller coaster and on this coaster they are fighting for their life, yet they still have those dreams and feel that these dreams are now unobtainable and the more they think about it the more angry they become. The roller coaster takes another turn.

I feel worthless, useless, and ugly. It feels that the more I fight to get off this ride the more it sucks me in and won’t let me go. I wonder why bad things always happen to good people. It’s true. Bad people get away with everything while good people get sick, are hurt or killed. The feeling to punch something comes over me. Or maybe scream, but I wonder if anyone can hear me as I speed by on this roller coaster.

Dreams… You always have them, you always want them, you strive to reach them, you stumble on the way to reaching them, but you get up and try again. Riding this roller coaster has taken its toll. Hearing people talk about their dreams and how they can reach them kills me. All I can say about my dreams is that I took the pretty blue and pink pill that is toxic.

The ride goes on and on. I’m still trying to escape but can never get the operator to stop at the station. It’s a great big circle going round and round, never ending, always running. Explaining my illness to someone else is hard. It’s not cancer but is treated with chemo, I didn’t contract malaria but I’m taking medication to treat that. I try to tell them what these do to my cells in my body. They are kind and pretend to understand but I know they don’t and they never will. I begin another lap on the track of the roller coaster.

Dreams…  I see other people talk about how this quote inspired them to chase their dreams and I wonder what kind of roller coaster they are on; what kind of twist and turns they’ve had and how they have overcome them. I wonder if they’ve had something such as illness permanently change course with no choice but to ride that ride and never get off.

I sit here and wonder if this ride will ever end. I want to get off and follow my dreams, but am frozen in place in the car on the roller coaster with one hand on the buckle hoping it will unbuckle and let me go. I wonder where I can/will go.  Is it possible to dream of anything other than being healthy?

Can I dream of finding love again? Are dreams of a career,, not just a job possible? Can I make a difference and raise awareness about a disease that affects millions, but no one knows about? Will there ever be medications developed to specifically treat lupus, not like it is now where there is one?

Dreams… The roller coaster speeds up and I feel like I need to vomit. I’m just going in circles, not moving forward on this ride. How can you reach your dreams when you’re really going nowhere? I’m stuck in a spiral of thoughts. Trying to figure out what to do next.

Can my dreams come true? Will this ever end? Does anyone care?

I begin to dream again and hold on to the thought that I’ll be able to get up from this fall and rise again stronger.

Posted by: hockeygrl1 | December 23, 2013

How I was Diagnosed with Lupus

I’m going to commit myself to writing. There it is; I said it. This is after I read Nikki Sixx’s This is gonna hurt and The Heroin Diaries. If he can do it (yes I know he’s famous and that’s why he has a book) than I can do it. After all, I’ve looked up to him since I heard “Shout at the Devil” at age 12; followed by my all time favorite song “Home Sweet Home”.

I suppose this is enough of the ode to the beautiful Nikki.

What should I tell you? My life has not been easy. I’ve lived in the lower middle class my whole life. Now it seems that the dollar amount that was considered middle class has swung to the right while incomes have not…. It leaves me as lower class now. Yes a lot of people are doing a lot with less these days, my family included.

It feels like since I’m starting over, I have so much to tell you about my messed up life. Here’s a brief summary: Bullied all through school, only got a handle on it my Jr. and Sr. years of high school, fighting with my mother (I love my mother but this is a big part of who I am today), a disease that was hindering my progress that was only finally diagnosed at age 35, a marriage and a divorce, 2 kids that I raised mainly alone with some help from family, a controlling boyfriend, a not controlling boyfriend but he couldn’t handle me being sick, buying a house, losing a house, moving into my parents basement and now trying to figure out what I want to do with my life. (you can breathe now)

Where do I start? This is where I get stuck.  I have too much to tell you and I don’t know how to get it all out of my head.

I was just flipping through the pages of This is gonna hurt again for inspiration. Between the pictures and writing, there has to be something that gets me going. I look at the pictures, all beautiful in their own way; the lighting, the subject, and the pose; it all brings the picture together to tell a story. And it’s beautiful.

Seeing a picture of a gravestone reminded me about the day I had to face my mortality. Not because of drugs (I can’t say I’m totally innocent here but alcohol is my drug of choice) but because of a disease. This is something I had my whole life, but no one knew it. I can name countless times I was in what they call a flair and doctors told me to slow down because I’m just over tired and never looked for this *shakes head in confusion*. Who can sleep all day and then still sleep at night? Me. The doctors never found that odd enough to run some simple blood tests. Oh well, it’s done. Can’t change it.

My body crashed on October 3, 2007.  I will never forget that day and how it has drastically changed my life and the life of my children. Thinking back brings tears to my eyes. Really what I see is my dad sitting at the end of my bed as I’m rolling around in pain with my bucket incase I vomit. He is trying to look strong, but is wringing his hands. I know he’s scared shitless. Maybe more than I am at this point because I’m so sick I’m not even sure what is going on around me.

They ask me to pee in a cup before I change into my hospital gown; all the while doctors and nurses are flying around my room getting things ready. Even now, I’m surprised they let me out of their sight. I do all the things you’re supposed to…. wipe with the special wipe from front to back and make sure it’s a mid-stream sample. Then I lift the cup up and holy fuck! My pee looks like coffee. I sit there for a moment already feeling like I’ll puke and start to sob.

What is going on with me? I was just in the gym the other day running on the treadmill. I drink water instead of pop and cook my meals at home. How can this be happening?

I get myself together and go back to the room. I sneak a peek at dad as I set the sample on the counter. He’s trying to hold back tears. He shakes his head as he tries to hold of the urge…. He’s trying to be strong for me.

I get into that sexy gown they have and climb under a warm blanket while they look for a vein in my arm. (Me, my mother and daughter have the worst veins for drawing blood and placing IV’s) It takes a few tries because I’m dehydrated. Needing to settle for my hand as a last option, I let out a squeak of pain as I feel the needle slide up and in my hand. I’m thankful it’s over.

And thankful for what comes next considering the prick in my hand was way less painful than the feeling of someone hitting me with a sledgehammer in my back – oh wait, I need to vomit again – . I’m writhing in pain. There are no questions from the doctor as he just gives me morphine. I feel the warmth take over my body slowly from the needle in my hand. That arm first, then my belly, now legs and finally my head and back. *sigh*

Finally, some relief. You know how you don’t really know how much pain you’re in until it’s gone? No? Then you haven’t felt real pain.

Slowly I begin to settle down and lay still under my warm blankets. Always with the bucket close by.

Now the questions come: When did this start? What do you rate the pain at now? Can you hold down water? When was the last time you ate? When did your urine change color? Do you have pain in any other area?

I do my best to answer the rapid fire questions coming, to my surprise from the doctor instead of the nurse. He is looking in my ears, nose and throat as he asks. You know the standard thing doctors do every time you visit their office. He looks to my dad to see if he has anything to add.  Dad just shakes his head. I can tell hes holding back his emotions again for my benefit.

They push more morphine when the first blood tests come back. The doctors realize how much pain I am really in; Pancreatitis with lipase numbers in the thousands. I think normal is around 100 or something. Yes, this is a very painful affliction. I seriously think someone is stabbing me in my back. I surrender to the warmth again, but unforchantly this causes the next couple hours to become a blir.

I’m trying to remember the tests that were run that night; CAT scan, more vials of blood, x-ray and who knows what else. I wonder if I was that doctors only patient. It sure seemed like it that night or maybe it was the morphine.

I know I wasn’t in the ER long before they decided to admit me.The treatment for Pancreatitis is to not eat or drink until your lipase and albumin are closer to normal. At this point I was so sick, I didn’t care.

Dad had the difficult job of arranging care for my children and dog for my hospital stay. I had the job of contacting my employer to let them know I’d be out of work for at least a week.

I didn’t know that this wasn’t the end of the story at that point. There were other worries the doctor was checking on, but I was so far gone from the morphine that he didn’t tell me.

My dad gave me a big hug and kiss on the forehead and told me to just rest and get better. He’d take care of the kids.

I had never rode up to a hospital room on a gurney.  Even when I was in labor, I walked. This time I was so sick I hardly remember getting to my room.  Looking back, that day is all a big blur. Doctors, nurses, IV’s, blood drawn, X-rays, CAT scans, more drugs.What did happen to my ice cream bucket?  I really didn’t know what was going on and if I did I would have been scared shitless.

That first night every 4 hours I’d push the button for more drugs. The pain was worse than labor and I didn’t know if it would ever end. There was no mention of lupus at this point. The focus was to make me comfortable and they did with lots of drugs.

Don’t go to a hospital expecting to rest and get better. I guess getting better will happen, but resting is a whole other thing.  They wake you up in the middle of the night, yea, every 4 hours to take your vitals. I don’t get it. Why wake a sleeping sick person? Nothing pissed me off more. And they’d ask you your name and date of birth. Read the bracelet; I was happily drugged up. (enough of my rant)

The days started to run together and I’d swear that it was a week before anyone mentioned lupus. I knew all about my pancreas and they were trying really hard to figure out why it was acting up, but not a single word about lupus.

Funny thing, they thought I was an alcoholic, yep me. They tested my blood because they didn’t believe me. (I don’t need to drink. I choose to drink. There is a big difference.)

I knew it would be about a week stay because I couldn’t eat or drink while I waited for my numbers to go down. I was sharing a room with someone that could eat and drink so mealtime sucked. Yes, I got to smell food I couldn’t eat 3 times a day and when my mouth was dry I had to swish and spit; nothing by mouth except a tiny amount of water with pills 3 or 4 times a day. I thought I was going to lose my mind, but by the third day the stomach stops growling and I didn’t even know I was hungry anymore.

The hardest part was when my kids visited. I didn’t know how to explain my illness to a 12 and 14 year old. It was really hard when they weren’t sure what was wrong with me or how long I’d be in the hospital. My mom and dad were helping with the kids and dog as I mentioned before. My children wanted to stay in our house alone with the dog, so mom and dad would feed them dinner and bring them home. They spent 2 weeks like this. The guilt I felt was unbelievable.

The second day I was in the hospital, the doctors sent me for a special scan of my pancreas, gallbladder and all the pipes and stuff attached to it.  The tech told me it was going to take an hour and I had to lay with my body in the tight tube still as I could the whole time. About half way threw the tech needed to step out of the room for a little bit. I don’t know why I didn’t have a button I could push if something went wrong…. but I didn’t and something went wrong.

I got that familiar feeling in my stomach. The awful nausea that I had for months leading up to this hospitalization. I couldn’t do anything. I was in a tube up to my neck, laying on my back. All I could do was turn my head and vomit in my hair. I started to cry. It’s just unbelievable to me at this point. How could this happen? What was wrong with me? Would I ever feel better? I was laying on a metal table puking in my long hair. I wasn’t just crying; it was sobbing. I was thinking, “Why me?” and there was no answer.

I had to lay there, in my vomit until the tech got back and then he cleaned me up the best he could because if i moved, the hour long test would have to start over. A nurse had to help me wash my hair. I was too sick and exhausted to do it myself. Really all I could do was sleep. There was no eating; just lots of pain medication to get me by.

I guess that’s why much of this was a blur; the morphine, but without it, the pain was unbearable. Maybe not being able to remember is best. It was a scary time… a time that brings me to tears when I think about it to this day.

I think it was days before the rheumatologist was brought in. I could be wrong. My urine was still red. Red with blood. This is when lupus was brought up. When they said something was wrong with my immune system the first thing that popped into my head was AIDS. It seems stupid now, but that was what I associated with an immune system disease. I panicked for just a minute thinking “How will I tell Eric” (my boyfriend at the time). Than the nurse said, “It could be lupus.  We are pretty sure, but we’re going to do a kidney biopsy to confirm.”

Ok, lupus…. What the hell is lupus? I’ve heard of it. I think my friend from work Mary has it and gets sick easily, but what does this really mean. Did I catch this? Why didn’t someone catch this sooner? I thought, “What the fuck am I going to do?” and began to sob, I mean ball for the first time since I entered the hospital i was really scared.

I asked the nurse if they had any information I could read on lupus because I wasn’t sure I knew anything about the disease, the treatments or prognosis.

I’m shaking my head right now.  I was 35 years old when this happened. I just bought a house, got a new job, had a boyfriend and a dog and now the shit has to hit the fan.  Why me?

I was reading the printout from the nurse…. “Lupus is a chronic inflammatory disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.” Great it can affect anything, not just my kidneys. “ The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.” What face rash? I’ve never gotten one. No wonder why the doctors didn’t catch it.

On to the symptoms section… “No two cases of lupus are exactly alike.” Really? This isn’t sounding good. “Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.” This could be permanent? Yea, it did kick my ass suddenly. “The most common signs and symptoms include:

  • Fatigue and fever
  • Joint pain, stiffness and swelling
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
  • Skin lesions that appear or worsen with sun exposure
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches, confusion, memory loss”

There has been some fatigue lately. I have been falling asleep on the couch right after work before I have even made dinner. But other than dry eyes, I haven’t had any of these.

Causes: “Lupus occurs when your immune system attacks healthy tissue in your body. It’s likely that lupus results from a combination of your genetics and your environment. It appears that people with an inherited predisposition for lupus may develop the disease when they come into contact with something in the environment that can trigger lupus. The cause for lupus in most cases, however, is unknown.” Unknown????? What do you mean UNKNOWN???? How can they not know why I have this fucking disease? If they don’t know why, how can they fix me? Am I going to die? what about my kids? I need to be there for them. Why me???? (I’m balling at this point.  Just sobbing into my pillow and of course a nurse walks in)

I had to let her take my blood pressure, temp and pulse again.  Every 2 hours. It drives me crazy. I said it before, you don’t get rest in the hospital.

By now I’m really freaked out. My urine looked like coffee and it felt like someone was stabbing me in the back and all I wanted to do was sleep and now I had to battle a disease with an unknown cause; unbelieveable.

The complications section is long so here are some highlights…. “Inflammation caused by lupus can affect many areas of your body, including your:

  • Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and leg swelling (edema).
  • Blood and blood vessels. Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).
  • Brain. If your brain is affected by lupus, you may experience headaches, dizziness, behavior changes, hallucinations, and even strokes or seizures. Many people with lupus experience memory problems and may have difficulty expressing their thoughts.
  • Infection. People with lupus are more vulnerable to infection because both the disease and its treatments weaken the immune system. Infections that most commonly affect people with lupus include urinary tract infections, respiratory infections, yeast infections, salmonella, herpes and shingles.
  • Cancer. Having lupus appears to increase your risk of cancer.”

This disease sounds just lovely. I’ll lose my mind and body and have an increased chance of cancer. I can’t get a break.

It was late at night by now and I was scared out of my mind.  They were taking a kidney biopsy in the morning and I have to stay awake while they do it. I decided to read the rest of the information on lupus in the morning.  I got morphine and a sleeping pill that night.

I didn’t really read the treatment section.  I was stuck on the things that could and were going wrong in my body and facing the biopsy was scaring the crap out of me.

The next morning was the big procedure. I told them I was a wimp when it came to needles and things so they gave me a valium to relax me but not put me to sleep.  It was done in an operating room, you know, freezing cold, sterile, bright and scary. There was a CAT Scan machine in there so they hit the kidney. The worst part was numbing the area all the way down to my kidney with novocaine. It took many shots, but who knows how many because I was loopy again.

Then it was time to stick the big needle gripper thing in my back.  At this point all that was felt is pressure because the novocaine was working.  I went in and out of the CAT scan machine multiple times until the doctor had the needle in the right spot and wola! a piece of kidney was pulled out of my body.  It looked like raw liver by the way.

I had to spend the rest of my day laying on my back because of the chance of internal bleeding. Yes, everything was risky and there was hardly any good news. Oh yea, it was going to take 2 weeks for the results. I was thinking, really?? But they were already sure it was lupus, they just didn’t know the extent of damage to my kidneys so on come the medications.

I wrote earlier that lupus is different in everyone so the treatment is different in everyone too. The doctor wanted to give me chemo. Yep, the treatment for lupus can include chemo. I chose not to get chemo because it could make me sterile. Instead we decided on CellCept, prednisone, and plaquenil. None of these drugs were developed to treat lupus.  CellCept is an organ rejection drug, prednisone a steroid and plaquenil is an antimalarial.

This was the beginning of the end of my stay in the hospital.  I was on a soft food diet; broth, pudding, bananas…. nothing exciting and my numbers were saying the pancreatitis was getting better. My urine was still brownish red, but it would stay that way for months. One of the joys of having kidney problems as well as having to store urine in your fridge when you do 24 hour urine tests… gross!

Eric (my boyfriend) brought me home. I was so weak. He was a sweetheart and got pizza for dinner for the kids. I don’t think I ate any.  Bella (my dog) missed me so much she climbed on my lap and would leave my side.  She even came to the bathroom with me. My kids watched a movie with me that night to get some mom time. It was all I was up to.  I was still so sick and the exhaustion was unbelieveable.

This was just the beginning of my journey with lupus. I’m still trying to adjust to life with it and make life better for myself and others. Who knows what the future will bring.


Posted by: hockeygrl1 | November 16, 2013

The diagnosis is…


I had my Endoscopic Ultrasound (EUS) on Thursday and met with my doctor on Friday to discuss the results.

Just in case you don’t know what pancreatitis is, here’s a definition from WebMD:

“The pancreas is a large gland located behind the stomach and next to the duodenum (the first section of the small intestine). The pancreas has two primary functions:

  1. To secrete powerful digestive enzymes into the small intestine to aid the digestion of carbohydrates, proteins, and fat
  2. To release the hormones insulin and glucagon into the bloodstream; these hormones are involved in blood glucose metabolism, regulating how the body stores and uses food for energy.

Pancreatitis is a disease in which the pancreas becomes inflamed. Pancreatic damage occurs when the digestive enzymes are activated before they are secreted into the duodenum and begin attacking the pancreas.”

There are two types of pancreatitis; acute and chronic. Acute happens suddenly for a short period of time. Chronic pancreatitis occurs most commonly after an episode of acute pancreatitis and is the result of ongoing inflammation of the pancreas.

Symptoms of acute pancreatitis may include:

  • Upper abdominal pain that radiates into the back; patients may describe this as a “boring sensation” that may be aggravated by eating, especially foods high in fat.
  • Swollen and tender abdomen
  • Nausea and vomiting
  • Fever
  • Increased heart rate

Symptoms of chronic pancreatitis

The symptoms of chronic pancreatitis are similar to those of acute pancreatitis. Patients frequently experience constant pain in the upper abdomen that radiates to the back. In some patients, the pain may be disabling. Other symptoms may include weight loss caused by poor absorption (malabsorption) of food. This malabsorption occurs because the gland is not secreting enough enzymes to break down the food normally. Also, diabetes may develop if the insulin-producing cells of the pancreas become damaged.

They compared the results to the one I had a year and a half ago and saw significant changes (worse) from the last one. so the diagnosis is Chronic Pancreatitis. They took a biopsy to see if the problem is autoimmune. The results of the biopsy are not in yet. They did see fibrosis and the doctor that did the EUS stated that my pancreas look like one of someone much older than 41.

The treatment is going to be enzyme replacement therapy. I take one pill before each meal or snack to place the enzymes that the pancreas would secret already in my digestive system and hopefully the pancreas would work less. I’m just going to have to live with the chronic pain because taking pain medications could cause the pain to be worse and addiction.

I still need to meet with my primary doctor to discuss my dizziness and fainting. This is keeping me from returning to work. I’m sure they don’t want me to faint in front of the guests.

I’m at a loss with this diagnosis because the pain is hard to take and I feel so weak and dizzy right now. I’ll keep you up to date on here.

Posted by: hockeygrl1 | November 12, 2013

Update day 2

Today wasn’t the best day. I had my CT scan this morning than an appointment with the doctor at 10:30.

They didn’t see anything abnormal on my CT scan. I need to have an endoscopic ultrasound. At first they were saying the next available  appointment was 11/211. I was like hell no! Now my appointment is this Thursday.

The doctor will send a scope down my throat this scope has a small ultrasound transducer on the tip. This allows the doctor to obtain higher quality images of my pancreas and ducts in my digestive system.

So what is going on? Pancreatitis is inflammation of the pancreas, the organ that secrets digestive enzymes in to the gastrointestinal tract. They have already taken my gallbladder out, gallstones can cause pancreatitis. Other causes are chronic alcohol use, trauma , medications, tumors and genetic abnormalities.  Trauma and medications have been rules out as well. The EUS will check for clogged bile ducts, tumors and genetic abnormalities.

The whole other thing that Haas me so upset is that the doctor is leaning toward this being idiopathic pancreatitis….. That means they have no idea why  I’m getting it but I’ll get it for the rest of my life. Right now that would mean dealing with this chronic pain and stomach upset.

Keep me in your thoughts.  I don’t know how this will turn out

Posted by: hockeygrl1 | November 11, 2013

Mayo Update

Well I’m here. They’ve taken blood and my pancreas numbers are still high. My doctor is running a test that has never been ran on my blood before. He’s checking to see if it is lupus. After 6 years finally!!!

Tomorrow is a CT scan just to see how my pancreas looks. I’m sure it’s not normal so they are looking to see if it’s enlarged and inflamed or if it has damaged or dead tissue.

The crappy news is my apt is at 7:30 and to take the shuttle we need to leave here at 6:20…. crazy mother

Anyhow- I’ll update you again tomorrow

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