Gastroparesis AKA GP

So, after doing every GI test known to man, I was finally told that I have Gastroparesis. The medical team was blown away because they had never seen a case like mine. They said that it looked like I had had it since birth. They said they had never seen a stomach that had been "rigid" an entire person's life. Yep, that's me! The Statistic! Which, when they explained it to me, it totally made sense. 

Growing up, I ate like a bird (still do). I am the slowest eater. I get full after a few bites. As tempting as it would be to overeat, I cannot. If I eat even one bite too many, it comes back up way too quickly. (I apologize if this is TMI or kind of gruesome) I was accused my entire life of having an eating disorder because I didn't eat much and because I vomited if I ate too much food. I did not have an eating disorder my entire life. I did develop an eating disorder my sophomore year of high school because I was so depressed. We moved my sophomore year. We moved from a very small town to a very large city. I knew nobody in the school. I was so shy and quiet and making friends was not an easy feat for me. I felt so out of place and alone. I developed an eating disorder because it was one thing in my life that I could control. My eating disorder was short lived because I had an amazing psychology teacher that helped me through it. Looking back now, I don't know how I made myself throw-up. I hate throwing up.

When I started having all of my stomach issues, I thought that my short bout of eating disorder had caused long term damage. When I asked my Gastroenterologist if this were the case, he told me absolutely not. Which is good I guess, because I carried so much guilt already.

After eating the radio active eggs and measuring how much food I had left at certain intervals, it was determined that I have delayed gastric emptying. My stomach is very rigid. It is paralyzed. I am limited on what foods I can eat. I pretty much live on the BRAT diet. Bananas, rice, applesauce, and toast. I have to eat bland foods or I will puke.  I never know what food I am gIt an happen at the most inopportune time.

I have been lucky thus far and have not needed feeding tubes or TPN.

GP is very painful. I get severe stomach cramps. I keep a warm rice pack on my abdomen as much as possible. Weight flucuates a lot throughout the day, and I can get very bloated. I can start the day with a flat belly weighing 108, but by the end of the day, I can look like I am 7 months pregnant and weight 113. I have not found anything that is effective against all the bloating, that doesn't make me sick in the meantime.

Quick overview, Gastroparesis (GP) affects the digestion of food. One has difficulty absorbing essential vitamins and minerals. People with GP, have delayed gastric emptying. Food can sit in my stomach for 2-3 days. GP affects the peristalsis. Pacemaker are now being installed in the stomach to help with gastric motility. My GP has not gotten to that point where I need to start worrying about that. Gastroparesis is a scary thing and it can totally control ones life with the nausea, bloating, stomach cramps, puking, and diarrhea to name a few.

Thank you for taking to time to read this.

We are Warriors!

My daughter had to stay home from school today because she has an awful stomach bug. I was up caring for her and she kept telling me that she was sorry. I told her that she had nothing to be sorry for, but she said she was worried about me because she knows how "fragile" I am. I told her "Nonsense, honey! You don't have to apologize to me, I am your Mommy and this is what Mommy's do. Besides I am a warrior, and I want to take care of you. You are more important than my issues, and besides, I am having a better day than I have had in days".

 So, I spent the day taking care of her and snuggling with her.

I was wearing my mask because my white blood cell count is low, and I need to do what I can to prevent myself from picking up any viruses. Used a lot of clorox wipes, blue puke bags and lots and lots of hand washing. I had a migraine start to escalate, so I put on my Cefaly in hopes of preventing it from escalating further. As I washing my hands, I glanced up in the mirror and started laughing. I looked fantasmic. I had my sleeping goggles on top of my head, Cefaly on my forehead, glasses on, mask on, and telemetry monitor on. I had to laugh, I looked cosmic! Even though Mallory was feeling yucky, I said (in a robot voice) "Mallory! I am not your mom, I am a robot". She started to giggle. I heard the most heavenly words "Mommy, I love you! Even when you don't feel good or I don't feel good, you always find a way to make us smile. We are Warriors (as she makes growly noise)!"  

 Ha! Ha! I look beautimous!

Yes Mallory, we are Warriors. Warriors don't give up. Warriors keep on fighting, and we find another way around if there is something blocking our way. It was a trying day, but I wouldn't change it for anything. Even when sick, we find ways to smile and make the best out of our current situation. I know that I will remember this day for a very long time, and I am sure Mallory is going to remember it also. 

Morale of the story: Don't give up, keep moving, find another way, and don't forget your smile along the way. :)

I especially love the bed head hair sticking out in the back!

Mallory and I had a great laugh.

Why I am so open...

This has been a very trying week to say the least. I don't know why, but this has been a very difficult week full of lots of tears.

I am not giving up hope nor will I ever. I am determined to make a difference in this world. Why am I so open and share so much about my life? Do I do it for attention? NO, not in the least. I decided a while ago that in order for others to understand how truly horrific migraines can be, they needed to see the good, the bad and the ugly.  I felt that if I were only sharing the happy moments of my life, it would appear as though my life is all sunshine and lollipops. Of course we don't like others to see us at our worse, but I gave up on that a while ago. If they don't see migraineurs suffering at their worst, the stigma will live on. It was very hard to open myself up and share all the details of my medical issues. Sharing my story has been very therapeutic for me. I am able to educate others, as well connect with so many people that suffer with migraines and other comorbid illnesses as well,

Throughout this journey, I have learned a lot. I don't take the little things for granted. I try to spend as much time with my family as possible. Before I was diagnosed with Chronic Migraines, I had no idea that migraines could be chronic. I thought there was no way that I will have that many migraines a month (15+ ). I thought I was just having a few horrendous months, but they would pass and I could get on with my life. Boy, was I ever wrong. I have migraines every single day. My baseline pain in 5/6, but I can function through it. I push myself. I am determined not to be a couch potato and do nothing with my life. That isn't me. So, I have found a few things to help occupy my time and learn at the same time.

I started "Making the Invisible Illness, Visible" on Facebook, because my daughters highly encouraged me to do so. They were like, having your own FB page will help boost awareness. My oldest daughter told me that it would be very beneficial, because my personal page wouldn't bombard all the people that didn't want to read about my migraines and such. Creating that page has helped me so much. I share personal things I have gone through, I provide educational links so people can learn more about a specific illness, I post inspirational memes, and whatever else I feel like. I think it helps me to talk about it and share my experience with others.

I would like to update my blog every day, but I am too sick or too exhausted to think of a sentence, let alone several sentences.

I am very depressed right now, basically because I'm stressing about finances. I  am also grieving the Amber that I once was. I fight. I am determined to get to the root of all of this. I refuse to let the chronic illnesses define who I am. I want to have as much control of my life, that I possibly can. I use up all of my spoons in a day and I have to borrow from other days, just so I can spend quality time with my family. There are days that I know I am going to pay for it later, but that's ok. I want my family to remember happy smiles and positive outlook can make a big difference.

Living with a migraine every day, can be challenging. I don't do anything for my migraine until the pain starts to escalate beyond by baseline pain level, which is a 5/6. There are trigger I can avoid, but there are several I have no control over, such as weather/shifts in barometric pressure, full moons and other environmental factors.

I do my best to just keep dancing it out, but some days my body wins. I do need love and support, every chronic illness person needs love and support. Thank you for reading. Hope y'all have a good day, free from pain.

Lost and Broken

I have not posted to my blog in a while because I have been struggling emotionally, physically and mentally. When I am down in the dumps, I have the tendency to shut everything out. I know it is a bad way of coping, but that is how I have been my entire life. I go to private, personal therapy once a week, and I also go to group therapy once a week. It is something I really need to work on, but at the moment in time, I am not ready to deal with that. My therapist says I need to work on other things first, such as loving myself. Crazy right? I love to reach out and help others. I love to smile. I love to see other people smile. Yet, I do not think highly of myself. I have always had a low self-esteem, so my therapist is working with me on this in private and group sessions. The past couple of months have been so trying. I have been so scared and terrified of the unknown. I continue to run fevers. I have had to go to the ER twice. Once for stroke like symptoms and seizures and another time because I collapsed on my way to an appointment. I hate being this enigma, this zebra, this puzzling patient that nobody can figure out what the heck is going on with my body. I had to go to a hematologist/oncologist last week because my blood levels keep dropping. My body isn't producing blood as quickly as it should. My white blood cell count is pretty low (3) at the moment, along with red blood cell count, hemaglobin and hematocrit are low. My HCT (hematocrit) dropped 2 points in under two weeks. There is a big question as to whether it has to do with my bone marrow production or other. Doctors are trying not to do anything invasive at this time, if possible, for fear that I will bleed out if they do. It is frustrating for many because they don't understand why the doctors don't just go exploring and try to find the cause. But since I am "stable", we agreed it is safer to do the less invasive tests first. I don't want to bleed out and I know the doctor doesn't want me bleeding out on his watch. They are keeping a close eye on my white blood cell count. The word "leukemia" came up, but as of right now, all is clear, thank goodness. I have to do a 24 hour urine collection for more tests. I continue to battle daily migraines. On a pain scale with zero being no pain at all, and 10 being the worst pain that one has ever experienced, my baseline pain is 5-6 on a daily basis. I never say my pain is a 10, because it can always get worse. The pain for the rest of my body has been a 9 the past few days. It hurts so bad just to walk. I wince and cry out in pain. I am so lost right now and so scared. I am sinking into this deep, deep depression because I am battling so many unknowns. I have no control over my flare-ups and attacks. I am stressed to the max about finances. I don't know how we are going to make it through this. It doesn't help that I have to keep having more tests done. I am not giving up. I am just so scared right now, but I know that this too shall pass.

Dance It Out

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What next?

I do my best to stay positive, strong and never give up the fight, but lately, I am so overcome with emotion that I don't even know where to begin.

Originally I was put on disability because my migraines had turned from getting 3-4 a month, to getting one every single day of my life. Since then, I have been diagnosed with other issues. Currently, I am more scared then I have ever been in my entire life, but I am not giving up. I am still staying positive and staying focused on what I am fighting for. I am fighting to make the invisible illnesses, visible, to people that don't understand all the "invisibles" out there.

This week has been weird. I had to go to Infusion Center to get migraine cocktail and 2 liters of fluid. My cocktail consists of Magnesium-Sulfate, Phenegran, Toradol, Solu-Medrol, and Depacon. It takes about 6 hours. The infusion does not instantly make me feel great, but it helps. I usually have to rest a day or two before I start to feel the effects. It kicked the migraine I had by Tuesday, but by Tuesday night I had an atypical migraine for me. It was in the back of my head and pain shot all the way through my brain and out my left eye. I couldn't move without puking. Ugh! I think, really. Can't I have a day where I feel enough to actually get things accomplished and feel like a normal person? For now, the answer is no, but I am not giving up or giving in. I will fight to the bitter end.

I have internal bleeding going on somewhere, but doctors are unsure of where. Currently they are trying to be as least invasive as possible, due to my history. One of my doctors called my yesterday and told me that my blood levels are very low. He is worried. He wants me to set up an appointment with a hematologist, because my body is not producing enough blood. I don't know what that all means, and right now, I am ok not knowing. I didn't make the phone call today, because I just couldn't do it. I would just break down into tears. I am in a denial/this can't be happening phase.

Right now I need all the love, strength, prayers, positive thoughts, etc. that I can get. I am finding that I can't do this all myself. I wish I could. I hate asking for help. I am feeling pretty worthless right now, because I can never accomplish what I would like to do. I am so exhausted and just want to sleep all the time (I am sure it is because my hematocrit and hemaglobin are pretty low). I still push myself and try to do a couple things. I take Ozzy for his daily walk, even if it is only for 10 min.

I am terrified of it all right now, but I know that things will happen as they are supposed to. This is my trial and I accept. I will go through all these challenges, 1) because I obviously have a lot to learn and 2) I would rather it be me going through this than anybody I loved or cared about. I don't want my loved ones to ever have to experience something like this. I will take the pain and suffering to spare them. This is my trial and I will endure to the end.

Don't judge by appearance.

I am sorry it has been so long since I have posted anything. This past month has been so hard for me. Long story short, I am going through a period, where I deeply grieve myself. I am in mourning for the person that I used to be. Seems that as time goes on, I lose more and more of my independence. I have gotten used to using my cane. I do not need it 100% of the time, but I was told by my doctors that I have to have it with me at all times to help with stability. My right leg completely gives out without notice. I have times that I am very unsteady on my feet. I get so light headed and weak within 2 seconds of feeling normal. My driving is very limited. My house is a big mess, but I can only do a little each day because I don't have the strength or stamina.

I have cried a lot this past month. I am struggling. I am so very scared, because of the unknown. Changes are happening so fast and I feel so helpless. I know we are all going to die one day, but I don't want to die yet. I have high hopes that I won't, but I am also realistic. When it is my time to go, I have no control, and I will have to say my good-byes. I pray that I will be around for at least 20+ years.   It is hard to explain because mostly everything I am struggling with, is internal. You can't look at me and automatically know that I am sick. When people see me and I am wearing make-up, hair is done, and my brave face is on, people always say "you look so good". It is easy to judge by outward appearance. So, I will share with you, what I posted on my FB page "Making the Invisible Illness, Visible".

Remember the old saying "Don't judge a book by its cover"? With all my invisible illnesses, I sometimes feel like I am being judged by how I look externally, and not how I feel internally.

We all have our own battles. No one person's journey is the same as another's. We are all individuals. So why judge or push something away that you don't understand? Why not take a couple minutes to stop and think before assuming? I am a work in progress, I am not perfect, nor have I ever claimed that I am perfect. I can say that I truly care when I ask how you are doing. I don't want the answer everybody expects, "I'm fine". I want to know how you are really doing.

As a chronic illness warrior, I have mastered my brave face and I do my best to keep pushing forward, but there are days that I literally can't get out of bed and I hate days like that. I want to be with my family. I would love to be able to go to work. I would love to have more control of my life, but at the moment, my body has more control, but I am fighting it. I refuse to give up. I rely on smiles, laughter and sarcasm to help me cope. Am I brave? I try my damndest, but I do have my days that I don't have the strength. There are days that I am so scared that I just sob, secretly, behind closed doors when nobody is around. Whether you are strong and brave or weak and timid, we are all deserving of love and compassion.

Please don't assume, that as chronic illness sufferers, that we are fine. We need love, strength, compassion, and support more than ever. Take it from me, living with chronic illnesses can make you feel pretty damn lost and alone. One day you're working and feeling great and then BOOM! Next thing you know you are being told that you can no longer work, your driving is limited, you have to have a cane to help with stability, you have to depend on others.This has been so hard for me, because I am an independent person. I love to help others, but I have a hard time accepting help. I want to keep living my life as before, but realistically, I know that I can't. I carry so much guilt, pain, sadness, etc. because I can't be the person I want to be. I am a go getter. I truly loved my job and I miss it so much. I am mourning me. I am not the same.

The thing that has been hardest for me, is my short term memory is not the best. I have a hard time speaking. I can literally forget what I am talking about mid-sentence. It is utterly humiliating and oh so embarrassing. Going from a girl that could pretty much remember anything to a girl that forgets everything, is so humiliating! I will wake up sometimes and I won't even recognize my own surroundings, at all. I am completely disoriented. Frequently, I have to ask somebody what they are talking about when they answer a question that I asked. The person then has to explain what my question was, and sometimes I will remember the answer they gave me and other times, they have to repeat the answer also. It has been so hard for me.

So much I want to do, but I am not giving up. I keep pushing. I will fight until the day that I die. I will continue to smile and make the most of what is given to me. I don't like to dwell on the negative, but someday's I have a pity party, to which we are all entitled to, but I don't let myself stay down. I get back up and fight and push even harder. I choose to look for the positive. I choose to seek what I can learn from all this. I choose to be my own advocate, and I won't give in until somebody will listen to me. Those of you that know me well, know that I am persistent and I back up my persistence with research, studies and facts. I am not only fighting for myself, but for all the chronic illness warriors out there.

NEVER! NEVER! NEVER! GIVE UP! (Winston Churchill).‪#‎dontjudgeapersonbytheirappearance‬

Mrswelches Warriors

‪#‎spoonie‬ ‪#‎chronicillness‬

-MrsWelches

That is a quick run down. I will update more , hopefully, tomorrow. Please pray and hope for an end in sight of this wild ride. I am getting motion sickness and just want to land with both feet safely on the ground. I am a fighter and I will fight until the day I die. I refuse to quit and take no for an answer. My current challenges:

• Intractable, chronic daily migraines
• fibromyalgia
• Reynaud's Phenomenon
• Sjogren's Syndrome
• Depression
• Several different types of anxiety.
• Painsomnia
• Gastroparesis (my stomach is paralyzed, and it takes forever for food to move through my digestive tract)
• Mysterious blood disorder that I am being worked up for