Feeling a Bit Down but I Have Hope

I am feeling a lot better since the surgery. I'm still in a little bit of pain because I haven't healed all of the way. I feel it every time I eat, which is conditioning me not to eat. I'm trying. The vomiting is still occurring but I'm used to it at this point. I'm able to leave my house more even though I still have to carry a bucket. But, that's OK. At least I'm more mobile now that I used to be.

I'm mostly upset because people have been saying that I'm too sick to think for myself - which isn't true. I may have a chronic illness, but I've got full control of my mental faculties. It hurt my feelings but I'm going to move on from it. People are entitled to their opinions, and I can't change it.

I am still waiting to hear back from the knee doctor about my implant and back surgery. I'm waiting for my insurance to get back to the doctor about the trial. I hope to hear something from them soon because I really miss hiking. I'm hoping that the trial cuts the vomiting in half, since that's my pain response also, so that I can get on with my life. As a Geologist, I'm going to be required to hike. Plus, it's something I love.

I thought about trying to attempt to do Yoga on the Wii Fit because I miss Yoga, too. But, I may need a chair for balance. I can't decide if it's a bad idea or not. I can't squish my stomach or I'll regret it later. I may not have any structural damage to my knee but the nerves are still misfiring. I really need to see a neurologist. I need to figure out the cause of all of these nerve issues. Gastroparesis is caused by damage to the vagas nerve and my knee has nerve problems as well. It's just too much of a coincidence to ignore.

Other than that, I'm feeling much better than I have in months. I'm getting used to this illness. I've lost a bunch of weight, so some of my clothes no longer fit. I need to go shopping for new clothes. It's not the way I wanted to lose weight but I've lost about 25 pounds so far.

All in all, I am feeling optimistic. I have hope now. I didn't before. I think I will be able to live with this and be fine. I need moral support, certainly, and not people tearing me down. I know it gets frustrating to listen to someone complain about being sick all of the time, but please be patient with me. I'm trying my best.

Motility Specialist Follow Up

I had an appointment at 8:30am this morning with the Specialist but let me give you some background on the past two days. I was up all night, really, really nauseated. I took my pain medicine and my anti-nausea medication but it did nothing to get rid the knot in my stomach. To explain how my stomach feels - imagine you're nervous before a test and your stomach is in a huge knot. Then, add an intense burning, sharp pain like you've been sucker punched in the stomach with an ulcer. Then, imagine that you had food poisoning and you just felt like there was a giant greasy ball just hanging out in your stomach. If you combine all of those feelings, that's how I feel on a daily basis with the nausea. That's the best way I know how to describe it.

So, I was up all night getting sick. I thought maybe the vomiting would help but my stomach managed to spasm enough that I pulled a muscle.

I had an appointment scheduled for the Motility Specialist, which was lucky, and got to go in this morning to talk with her about my Smart Pill results. She said that the Smart Pill did show a delay in my gastric emptying, confirming what I already knew, I have gastroparesis. She told me I needed to follow up with my GI doctor now, so I'm wondering what was the point of seeing the Specialist if she's not going to treat me for this rare condition.

She did prescribe an antispasmodic, which should help with the pain after eating. That's leftover from the ERCP that my regular GI doctor did. However, both doctors cannot explain the vomiting. The best theory that I have gotten is from my regular GI doctor - the food that I eat sits in my stomach for days until I get food poisoning and vomit it up. So, essentially, I always have food poisoning. I have to make an appointment with the Nutritionist and come up with a diet plan.

Vomiting is also my pain response, so I hope that once I get this trial for my knee, the vomiting will be cut in half.

The Specialist then told me to see my psychiatrist because I'm already on an antidepressant and anxiety medication. The drug to help treat this is also classified as an antidepressant. You can read about Nortriptyline HERE.

I called his office and I'm waiting for him to give me a call and let me know if he will prescribe it. I just saw him two days ago, and he knows about my gastroparesis. I don't think he'll have a problem prescribing it but I would like to start it as soon as possible since it takes a while to work. This should help with the gastroparesis, some. I don't understand why the Specialist couldn't just prescribe it. It's not controlled. I get the drug interaction thing but she knows ALL of the medications I'm on. Oh well, I'll wait around and see what my other doctor says.

So, that's my news. Gastroparesis is confirmed, which I already knew it would be. I've had the ERCP and I'm going to try this medicine. I would really like to have my normal life back. I miss being a social butterfly and I miss leaving the house.

My friends and family have been a great support network. I cannot tell you how much it means to me for the encouraging words, funny pictures to cheer me up, coming over to hang out because you know I can't leave the house. It really does mean so much to me. And of course, for reading my blog. I wasn't expecting for it to be as popular as it is. I just wanted to say thank you to everyone for being there for me. It really does make me feel better knowing that I have such great friends and family, and of course, a wonderful husband. I honestly could not get through this without you guys.

It's also nice to feel validated that this isn't all in my head. I've gotten that from a few past "friends." I felt isolated for a while because people viewed me as negative and attention seeking, but I know my body better than anyone and I'm glad I stayed persistent. I try not to be negative but I have bad days just like everyone else.

If there is anyone out there who reads this blog and has medical issues, my advice is to find a doctor who will listen. I cannot tell you how many bad doctors I've gone through until I found someone who understood and helped. Keep trying. I know it can be discouraging but you have to be your own advocate.

My doctor was right about starting this blog, though. It has helped me to get everything out and to channel those negative feelings into something positive for someone who may have the same issues I do without a diagnosis. I think my friends understand me better now, too. You can tell someone you're sick all day long and they'll get annoyed at you for always being sick, but you have to help them to understand. This doctor is the best doctor I've had yet and I'm glad that I finally know what's going on.

It's hard living with a chronic illness and it can get you down ... but be strong and fight back. I am going to. I am determined to lead a normal life again, and I will; one day at a time.

GPACT

I found two pictures, courtesy of GPACT that made me feel a bit better. I'm still vomiting, even after the ERCP. I'm still in pain from healing as well.

I met with the knee doctor yesterday and he's just waiting on the insurance to improve the trial.

More information can be found HERE.

So, I guess I'll wait. Hopefully, if I can control the knee pain, the vomiting will be cut in half since it's my pain response. I'm trying to figure out if the vomiting is actually coming from my gastroparesis or if it's caused by pain. It's a hard thing to determine.

I just feel very tired and weak. I have a cold, too. I've been sleeping a lot the past two days hoping I'll feel better.

GPACT could really use your help if you are interested in donating to help find a cure. The information can be found HERE.

They write on their Facebook page:

G-PACT Fact, Day 31- As we close out DTP Awareness Month 2012, we want to thank all of you for your support!

G-PACT is a non-profit which was founded on Aug. 23, 2001 by a group of patients. Most of us are on disability from this (and/or
a combo of other conditions) and saw the needs that so many patients had. We fight this every day along with you. We are all volunteers which can make this very difficult as our health is very unpredictable. You understand! A small handful of volunteers have run G-PACT, which has become international and reaches out to over 30 countries and all 50 states, from hospital beds, nursing homes, and home computers all over the world.

An added challenge is that we do not work from a centralized location and are scattered across the world. While this allows anyone to get involved, sometimes it can also take us a little longer to get everything done.

These are two unique challenges we face as we fight for you. We volunteer up to 80 hours a week during busy times, so we appreciate your patience and support as we work hard to bring you the best that we can given the circumstances! We are inspired to continue our work because we see progress and feel that our work has made an im-PACT.

There is still time to do things from this month. We extended the media letter writing campaign in order to accommodate some events taking place this weekend. Please send us your letters so we can begin putting final details into the project. Awareness and a cure is important as the death of another member harshly indicates.

If you would like to help us in any way to continue our work, we could use additional funding to continue our work, volunteers to lighten the load on a few of us, or other contributions to help us get things done. Increasing awareness is vital and awareness events are appreciated to help spread the word. If you would like to do anything, please contact us at contact@g-pact.org. Donations can be made through Paypal at accounting@g-pact.org or on our website at www.g-pact.org/giving.html. There are many ways you can help, even if not financially. We appreciate hearing from you and knowing you support the work that we do.

We do this for you and we fully understand what you are going through! That's why we are so passionate!

Even though today is the last day for DTP Awareness Month 2012, we do not stop. We do this year round. Look for activities coming up in 2013 and many ways to increase awareness and get involved in some of our political advocacy work. We are encouraged by the approval of Linzett yesterday, and hope to see many more in the near future until everyone has something that works well for them. We all want to eat normally again! :D

Feeling Good Even When You're Feeling Down

I found this on Facebook today and I thought it was worth sharing. It almost made me cry. Even though I don't have fibromyalgia, this applies in my case with Gastroparesis as well. I thought it might help some people out there.

Chronic illness can have a devastating impact on your psychic well-being. No matter how agonizing the physical distress, the mental anguish can be more difficult for you to bear. Self-doubt, self-loathing, helplessness, powerlessness, anxiety and fear are some of the demons that people with fibromyalgia (FM) and chronic fatigue syndrome (CFS) battle daily. Illness can wipe out self-confidence and peace, and in their place leave painful doubts about what is real. So what can you do?




Part 1, Feelings of Self-doubt



"Am I really sick? Am I imagining this? Am I weak? Did I cause this ... if I had eaten better, exercised more, been more positive, would I be well today?"



Anyone who begins each day awakened by pain is convinced that something is wrong with his or her body. But when a doctor can't find anything and the family members grow suspicious, it is difficult not to doubt yourself or to drop into depression.



Recognize your self-doubting, self-blaming thoughts quickly. We talk to ourselves all day long, often in a negative manner. Learn to talk to yourself as you would talk to a good friend. You have an illness and you did not cause your illness. You need comfort and understanding. You deserve such care even from yourself when you are feeling ill.



Also, express your need for understanding and validation to family members and friends - ones you trust will listen and be in your corner. A good support group can be helpful too.

There are four parts to this series. I have included the other three below.



Part 2

Self-dislike

“How can I look attractive when I am so dependent? Who wants to employ someone who might be ill all the time? Why can’t I beat this illness? If I had greater integrity, I wouldn’t be so incapacitated.”



Persistent self-doubt results in self-dislike. It’s difficult to feel self-respect and self-affirmation when, in addition to feeling ill, you are overwhelmed with constant misgivings about your condition. This is especially true when these inner doubts are further fueled by the skepticism of others.



Liking ourselves seems to be a goal for all people. For whatever reason, we all tend not to like ourselves. We are critical of our own bodies, our hair, our size. In an effort to overcome our self-dislike, we base our worth on things that we can do better than others – make more money, keep a perfect house, have more accomplishments.



Our worth is not based on who we are but on what we can do or what role we play. Illness usually undermines that foundation of worth. We just cannot do what we once were capable of doing.



You must learn to go deeper to appreciate your true self – someone who doesn’t always feel well. Know and accept your limits. Focus on what you can do, not what you can’t. Count your blessings and learn to appreciate what you have.



One person with chronic illness looks in the mirror every day and says ten positive, self-affirming things to herself, such as, “You are ill, but you have the courage to get up and do what you can.”



Try to love yourself as you love those dearest to you. It is not easy, but love starts at home with you accepting you.

Part 3

Fear of Mental Illness

“Is this all in my head? If I were a more optimistic person, would I feel better? Am I neurotic or depressed? If I’m not sick, am I crazy?”



Possibly no fear is as harrowing as the fear of insanity. Loss of control is frightening; loss of mental control is terrifying. Our mind is our sense of ourselves and gives us our understanding of the world around us. To lose our minds is to lose connection with ourselves and communication with everyone and everything else. Images of what we would be like without our mental faculties are chilling images of blubbering, incoherent, incontinent unfortunates. Any threat then to our sanity is a dire threat to our well-being.



When you feel ill, horribly ill, yet the doctors cannot find anything wrong, when they suggest the cause is stress or imagined or mental, it is very difficult to keep trusting your own experience. Most likely you have endured the horrors of the diagnostic ordeals that you were put through, but your battles may not be over. New symptoms can crop up at any time, and you need to rely upon your instincts to determine if they are just FM/CFS-related, or if they require additional medical attention.



How do you ward off the fear of mental illness? You do this by trusting yourself and by accepting your illness. Learn more about your illness and its symptoms. Talk to others who share your condition and who experience similar symptoms (use our discussion board). Don't allow prejudicial messages from family members and from doctors to cause you to think that you are imagining your illness. Your fibro is REAL. Find a doctor who understands and who will work with you in finding what therapies are good for you. Above all, don't doubt yourself. No one knows your body as well as you do.

Part 4

Giving in to Illness – Or Giving Up

“How do I fight such an illness? What’s the use? Maybe if I get even sicker, people will see that I really am suffering. Maybe I should let myself go and really look sick. I would rather die than face this for the rest of my life.”



We all occasionally feel sorry for ourselves. But self-pity is not attractive; nor is it conducive to a healthy mind set. Feeling sorry for yourself fosters self-absorption and its consequent behaviors: complaining, petulance, demands for service and attention. This leads to loneliness and sadness.



When we stop trying to cope with our illness, to understand it, to deal with it as courageously as we can, then the illness can crush our spirit. Living with chronic illness is a soul-sized battle. If the flu can momentarily flatten us, chronic flu-like symptoms can be devastating! Excruciating pain and indescribable exhaustion both seem like torture. The men and women besieged by chronic illness need all the support of their spirits and all of the inspiring support of those who know and love them.



How do you keep up the fight? Take one day at a time. Get up right away in the morning. Don’t lie in bed and think hopeless thoughts. Live today, doing what you can, not letting yourself worry about what you might not be able to do tomorrow. Be thankful for what you have rather than think of what you have not. Strive for the courage to accept your illness with dignity – not denying it. Care for yourself wisely and care for others generously. Enjoy beauty wherever you find it.

It's nice to know that there are people on your side when you're feeling down and to know that how you feel is NOT your fault. I was feeling a bit down earlier because I started vomiting again but it's not my fault. I am tired of thinking that this is my fault. It's important for anyone with a chronic illness to remember that, no matter what you're told.

Day 8 - Free of the Hospital!

They let me out today! The nurse woke me up around 11am and told me she was there to take out my Picc Line. I was half asleep and she took it out. The second nurse came in and gave me my paperwork and took me downstairs to the car. I didn't get a chance to see the doctor before I left but she told me to follow up with him as needed.

I'm still in a great amount of pain - especially when I eat but I guess that's to be expected since he cut into the muscle that controls bile release for digestion. I wonder how long that will take to heal.

So, I'm at home, trying to get comfortable and trying to rest. It's hard because my sleeping schedule is so off from the hospital. I didn't get enough sleep because I was poked every 15 minutes. Now, I can't seem to settle down to sleep but I'm tired and really anxious for some reason.

I feel like I'm about to have a panic attack and there's no reason for it. I'm tired of being ill. I get frustrated not being able to do things with my friends because my digestive system severely handicaps me. I just hate feeling left out of everything because I'm too tired or sick to participate. It's to the point where people don't even ask me to do anything anymore. That really sucks. =(

At the moment, I'm just really lonely and bored.

Day 7 - Hurts like hell ...

The charge nurse came in and lectured me about walking around the hospital while the nurse was administering my medication. The thing is, I had been walking around the hospital before yesterday - before the complications of pancreatitis hit. Now, it hurts so badly, I'm having trouble getting up and going to the bathroom. My abdomen feels like someone squashed it or possibly I had a line drive hit into it. The pain is sharp and intense.

I was asleep when the doctor came in to talk to me but she's going to draw more blood for lab work to see about my lipase levels. She told the nurse that they're slowly trending downward. I hope so, I'm ready to go home. I'm so tired and I want to actually get some sleep. Having pain medicine every 6 hours isn't really doing me any good - it hurts so much. I don't know why doctors decrease pain medication right after you have surgery, it seems weird to me. You think they would want to make me comfy until I go home.

I'll update more when I talk to the doctor.

Update: The doctor is moving me from IV medication to oral medication and is giving me full liquid trays to see how well I tolerate them. She has decreased my IV fluid intake from 200.0mL/hr to 100.0.mL/hr.

My room was like a party today. All I wanted to do is sleep, since I've gone without sleep for a week in the hospital.

I was visited by:
1. A Physical Therapist
2. An Occupational Therapist
3. My Doctor
4. The Nurse
5. The Tech
6. The Teaching Nurse
7. A Patient Advocate
8. A Patient Volunteer
9. The Floor's Chaplin
10. The Charge Nurse
11. The Charge Nurse's Director


I just really wanted to be left alone. I wish they would increase my pain medication because my side hurts so much. I'm hoping they'll let me go home tomorrow since I was able to keep down the liquids today. I really want some real rest. =(

So, I guess I will keep you updated on what happens tomorrow.

Day 6 - Day After Surgery (Oxygen Issues Again)

This marks the sixth day of my hospital visit. I'm waiting on the lab results to see if any of my enzymes have gone down. My side is still in some pretty bad pain from yesterday and my throat is sore. I hope they feed me today. I'm really REALLY hungry. Also, I have a fever but my blood pressure went down to 127/80. That's good news! Hopefully, it will stay down. It goes down with the pain medication. I don't think they'll send me home today but I'm not sure. They want to make sure that I don't develop pancreatitis.

You can read more about Pancreatitis HERE.


I was able to catch a couple of cat naps last night but woke up to horrible pain. I'm really exhausted. I'm hoping that when I get my Dilaudid and my Phenergan in a hour that I'll go to sleep. I think I'm going to stay up for a bit and see if food comes.

I think I overheard them saying in the surgical room last night that I could resume a liquid diet this morning. I thought I also overheard them saying when they took the breathing tube out that I stopped breathing for a few seconds. They had to put a breathing tube in an sedate me completely for the procedure because I had been vomiting so much. The anesthesiologist said that he didn't want me to vomit during the procedure and then drown in my vomit.

I'm not sure if I really did hear that or if it was imagined. I imagine it was true because they put me on more oxygen and kept me on it. My oxygen levels did go down to 80 day before yesterday. I wonder why it keeps doing that? It's worrisome. So, I have to wear oxygen all of the time now.

Right now, I'm just anxious. I'm scared about classes, I'm scared about the future, I mean, what if this isn't the solution? What if I keep getting liver stones? I also don't know what to do about the gastroparesis. I'm going to ask my doctor today if he found any results from my Smart Pill test later.

I need to make a follow up appointment with my knee doctor. Next up, is the trial surgery. *sigh*


UPDATE: The doctor just came in to talk to me about my ERCP. She said that the sphincter they were worried about was almost closed shut. When the doctor made the ERCP incision, he released it which caused all of this "gunk" to flow out of it. That included blackish looking sludge along with gravel shaped stones. So, their theory of the sphincter was right on the money. My labs are slowly going down and the doctor is going to increase my pain medicine (since I just had surgery and it's wearing off quicker now) and advance my food this evening. If all goes well, they're going to send me home. Again, they want to make sure that I don't develop pancreatitis.

I should have asked her for something to help me sleep. I haven't slept almost the entire time I've been in the hospital. I'm exhausted and I hurt. I can't get comfy. So, I guess we'll wait. I'll keep you guys updated.

Day 5 - Post Surgery

So, I had my ERCP done today. They found a sludge like material along with some gravel like material in my bile ducts. The doctor cleaned everything out and made an incision in the sphincter in my bile duct so that it will release bile for digestion easier.

The heart echo and EKG were both normal.

The doctor said that he was going to watch me overnight to see how I felt. And of course, I'm really annoyed now because I'm on pain medicine and my husband is trying to be super helpful. That's even more annoying when I'm on pain medicine. The kitchen just brought me food and he wouldn't let me eat it because I'm not supposed to have anything by mouth until tomorrow. I snuck a couple of carrots though ... and that lemon icing cake looked really tasty. =( I should have eaten it anyway, I'm starving. Now, I'm even grumpier. It's mean to put cake in front of me when I can't eat it.

My nurse is going to give me my antinausea medication and I'm going to try and sleep since there's nothing else to really do and I can't drink anything to ease the scratchiness in my throat.

But, everything's OK so far. I guess we'll wait and see if I develop inflammation of my pancreas.

Day 5 - Surgery Today

The nurse came in and took another EKG today since my last one was a bit abnormal. The doctor yesterday said that the Zofran could have caused that too and took me off of it. He said for me to list it as an allergy from now on. Another nurse came in and took an ECHO of my heart as well, just to follow up on the abnormal EKG. If everything looks fine, I'm having my ERCP procedure done at 2:00pm today.

It was hard to sleep last night. My night nurse lectured me and told me that my pain medicine was as needed, I didn't have to have it every two hours. The problem is that when I go to lay on that side, it's startling and wakes me up with a jolt because it hurts so much. Plus, people kept waking me up to get my vital signs and to draw up lab work - it's hard to sleep in a hospital. She's the second night nurse I've had who has lectured me about pain medicine.

I hope after today, I'll need less of it. I kept trying to explain that I have liver stones and they're painful but I guess the night nurses don't care. They probably don't like that I make them work.

I'm laying here pretty nervous and tired. I want to get this procedure over and done with. My doctor was also going to find out the results of the smart pill and share it with me. I've been placed on blood pressure medication as needed while in the hospital because my blood pressure keeps going up.

I guess I'll let you know what they find as soon as I know! Wish me luck!

Day 4 - Telemetry

The nurse told me today that I'm going to be on telemetry today. I guess they're still monitoring my heart. My blood pressure came down with the medicine from 180/117 to 123/82 today. So, that's a big improvement. I feel a little better already! The doctor came in to see me and said that they would do the procedure for the ERCP tomorrow. He said it could be around late afternoonish like 2pm or 3pm. I'm a bit nervous and scared. I hope this procedure works and that I'm feeling much better after. I have a feeling that once they go in, they won't find anything.

I'm meeting with a cardiologist today because my qrt wave is prolonged in my EKG. My nurse said that Zofran can cause this but they're keeping me on telemetry as a precaution. So, I guess I'll be able to update you more on that later.

The Cardiologist came in and told me that they were going to keep me on blood pressure medication as needed until I left the hospital. After that, I need to make an appointment with my regular doctor and talk to him about my pressure. I also am having an echo of my heart done in the morning to see if there are any concerning abnormalities. The Zofran has been stopped and I guess they're waiting for the Zofran to leave my system before they can test my heart.

The Cardiologist did say that my blood sugar was high yesterday but they reran the tests and I'm not diabetic, so that's good news. I wasn't aware that there was a possibility that I could be.

I'm still wearing the oxygen and now I have a telemetry unit hooked up to me. I'm starting to have more wires than Frankenstein! =) Oh! I also just became the mayor of my hospital on Foursquare. Sad, right?