Gastroparesis and Losing Your Job
Hopefully by the title you can guess what has happened in the nine months I have been away. I will be going back to posting every Wednesday for those of you that follow the blog. Sorry for being away so long.
So much has happened since I’ve been gone. I went on short term disability only to have my long term disability denied when it came time to transition. I was told the reason for the denial was the lack of clinical evidence. So I have obtained a lawyer and we will se how that goes. Due to this denial I lost my job. Let’s be honest, we all knew I would not be able to go back but it was still a very harsh blow.
I’ve never been fired before. That being said, I was already feeling pretty useless as a human being. Being a stay at home mom that can’t do most everything a typical SAHM does had already negatively impacted my self worth. Then being hit with losing my job because of attendance issues, well that was just the straw that broke the camel’s back. I went into a deep depression, I slept constantly, I cried constantly, I was a joy to be around. That last part was sarcasm if you couldn’t tell.
It was a nasty week until my SO reminded me how much I actually do for our household. He said that some people in our situation would not be doing as well as we do. We still have the money for utilities, the mortgage, family vacations (when my health permits) and other entertainment things because of all the little things I do. In fact we live more richly now than when I was working. I use several rebate apps when shopping and I am very active in one web page in particular. Combine all that with my coupon usage and eBay sales, I easily save this family of five $600 a month. That was the boost I needed and what actually dragged me out of my depression.
You may not be able to do what you used to do but you are still a useful and valuable individual. I look around at my kids and they are all happy and smiling, even though they have to do the picking up, laundry and dishes. They are polite and caring people and I did that somehow. I urge you to find something for you to do. I’ve listed my toddler’s too small clothing on eBay and it only takes me a few minutes. I’ll post some links to the apps and web pages I use to supplement my SO’s income. This is my hobby, it’s new to me and I find I enjoy it and it makes me feel like I contribute.
Gastroparesis isn’t the end of your usefulness you just have to be sneaky and find new things you can do. I know eight hour days are not in everybody’s book. I know they aren’t in mine. And I also know everyday things aren’t in everyone’s book, mine either. But I can do an hour or so on my good days and that’s what makes me smile. Using that hour adds up.
Swagbucks: I just cashed out a $50 gas card and a $25 Target card on Swagbucks. Last month I cashed out $160 in Target giftcards on Swagbucks, and the month before I cashed out for a $100 restaurant card and a $25 Target card. So in two months and nine days I’ve cashed out $360 total. I love Swagbucks!! If you would like to join use this link:
http://www.swagbucks.com/refer/PWelsh8001
iBotta: This is a grocery rebate app, which is amazing since we are on a strict grocery budget. They offer new deals each month and the offers refresh. So if there is an item with a rebate that I need more than one of I will get the one, wait for the rebate to refresh and get it again. I like this since I don’t have to be at the store to use it. I can write a list for my SO and scan the items and reciept when he brings them home if I am not well that day.
If you’d like to join look in the Play Store for Android users: https://play.google.com/store/apps/details?id=com.ibotta.android
For Apple users: https://itunes.apple.com/us/app/ibotta-cash-back-app.-grocery/id559887125?mt=8
and use this referal code:
ddruoa
Shopmium: This one is a slow earner for me because I do not regularly buy much of the rebate offers they have, but any rebate is good money and this goes straight into PayPal with no minimum balance requirement.
For Android users: https://play.google.com/store/apps/details?id=com.shopmium
For Apple users: https://itunes.apple.com/us/app/shopmium-grocery-coupons-cashback/id453007855?mt=8
And use this referral code:
MAFFHUWC
I’ll let you know of any other apps I run across. New posts on Wednesday starting this week.
Hang in there,
PattyCakeDoll
Gastroparesis and the Fight
Last week I was in the hospital for dehydration. Luckily I was able to leave before my grandfather’s funeral, two hours before to be exact. I made it to the funeral with my slippers on because I didn’t have time to get my dress shoes from home. I was so glad I got to go. Today was my follow up appointment at the gastroenterologist at Vanderbilt. I will say that today my doctors failed me miserably.
I was ready to go with my list of questions and my list of things I can no longer do. I had quite an extensive list of both. I got to ask none of my questions at all and my doctor simply glanced over my inabilities before he got his instructor to come in and tell me there was no reason I could not do the things listed. To give you an idea the list is as follows;
Home
Cannot shave legs – causes pain in abdomen
Cannot tie shoes
Can’t pick up 3 year old
Cannot use dust pan
Cannot pick up floor
Blood Glucose is difficult to manage
Cannot have sex
Can’t load/empty dishwasher
Can’t load/empty dryer
Can’t clean litter boxes
Can’t feed/water pets
Can’t have 3 year old sit on my lap or cuddle
Can’t give toddler a bath
Having trouble concentrating
Can’t change toddler’s diaper unless toddler is at waist level
Work
Can’t eat at work
Nausea meds make me tired
Prolonged speech can cause nausea and vomiting
Can’t sit for long periods of time
Get car sick
Have infrequent breaks
Need a trash can near desk
Surprise vomiting (caused by a burp or cough)
No pain management
Having trouble concentrating
Anyone with GP can tell you these are perfectly logical as bending at the waist can cause pain, nausea and vomiting, while sitting for long periods makes the stomach even more sluggish. I even wrote y doctor a nice missive in case he did not let me talk;
I cannot work like this. Between the pain, nausea, and vomiting I cannot function as a human being. I don’t wear pants because bloating is an issue. I don’t wear tennis shoes because bending over can cause vomiting and abdominal pain. I feel like a useless person, as if I am a failure to my family. Shopping is an adventure because there is no telling if and when I will vomit or if and when the stabbing pains will hit me. I am filled with anxiety when I have to leave the house. At home after I eat or drink I keep a large cup nearby for when I vomit. There is nothing quite like running through Kroger or Target to get to the restroom with a mouth and hand full of vomit. Unless that is running from your desk the same way so as not to set up a vomit chain reaction.
After all of that and all the doctors could say was there was no reason I could not do those things. I got to ask one of my fourteen questions today; what to do about work. The answer? I was told I could go back to work tomorrow. I have lost faith in my health care system. I am vomiting up my guts, I have lost fifty pounds in five months and the anti nausea medication isn’t working not to mention they have taken me off all pain medication and I can go to work tomorrow. What about all my questions they didn’t have time for?
What are our options for long term treatment?
What are the side effects of taking erythromyacin long term?
How are we going to treat nausea?
What is our plan for dehydration?
Can we get home health for emergency fluids?
Will my nutrient absorption continue to drop as the disease progresses?
Is a 50 pound weight loss in such a short time cause for alarm or are we waiting until I get to a “normal” BMI to worry about that?
Is it okay to only be drinking two Boost shakes a day and can I live off of that?
Why is my hair falling out since my thyroid levels are good, is that a sign of a nutrient imbalance?
What is the short term treatment plan? What are we going to do about this right now?
What is our action plan for when I have another flare up?
Will an NG tube be a treatment option?
Will this disease eventually leave me disabled?
But instead of getting to ask these questions the good doctors at Vanderbilt instead told me, when my SO spoke up about how working would be near impossible because of the vomiting and pain, to deal with it.
I know this post is going off to rant land but I am absolutely appalled! Deal with it, there is no reason you can’t do those things, return to work tomorrow. I fight every day to be heard. I fight for every scrap of medical assistance given to me. I fight every day from sun up to sun down trying to get enough nutrition to survive. I fight my stomach to keep it all down. I fight my insecurities so they don’t take over my life. I fight my insurance to cover testing and medical leave. And now I fight my doctors. I want to be heard, I want someone to listen and I want a doctor with compassion. Every day with gastroparesis is a fight. I cannot understand medical professionals that cause us to fight them.
This month is gastroparesis awareness month, help me spread the word so we can get doctors that listen and better treatment options. We can win this fight together! #cureGP
Gastroparesis and Family Gatherings
By now most of you know my grandfather died, he was 82 years old and lived an amazing life! You can read his obituary here: Harold Welsh. Looking through the scrapbooks of his life was very enlightening. He had some major accomplishments and went all over the world. He was truly a great man. We all gathered as a family last week to share our stories of Pa and reminisce before the funeral on the 24th. As with most family gatherings this involved food.
We have a chef in my family, my “baby” cousin. He is a great chef and he brought his talents to that dinner. Being the weak willed person I am, I ate. Turkey, stuffing, potatoes, sweet potatoes (don’t ask me why it was thanksgiving themed) a recipe my Granny used to call corn is king and rolls. Now as you already know, eating solid food for me is a big no-no. So I vomited once there and about a million and one more times at home. I was miserable! My stomach hurt, I was so very nauseated and I felt like at any moment I was going to pop. I guess I did in a sense. So after that night I got to thinking, because after all there is a funeral coming up and all good southern women feed the family, what can I do to stop this from happening again?
I came up with a few ideas that I think may help me in the future. You may have seen my Twitter post about Beech-Nut pouches. I swear by those things. When I cannot stand to eat another bowl of soup, or make another glass of juice or drink another meal replacement shake, I pull one or two of those out and have that instead. Most times they stay down nicely. So I started a “meal kit” for my purse. I have two pouches, one veggie one fruit, a meal shake and something I absolutely love that I find works for me, seaweed.
I get these roasted seaweed snacks from our local Asian market and it satisfies my need to chew without 1) filling me with unnecessary air like gum does and 2) being a lot to eat. Each little stick of roasted seaweed is 10 Cal to give you an idea of how much actual food it is. I haven’t had a problem digesting these, yet. I will say yet because gosh only knows what can happen.
So I have a game plan. But I want to ask you, what do you do for family gatherings? Got any ideas or tips that you think will help?
Gastroparesis Why?!?
You may be right where I am right now asking yourself why. Why did this happen, why me? Trust me I am right there with you. Right now I am asking myself these very questions. Obviously, if you’ve read my other posts you know, I am a diabetic, however until Gastroparesis my diabetes have been under terrific control. Many doctors will come out and say, this is because of your diabetes. In fact my first doctor said this without looking at my 6.5 A1C that I’ve had for the past five years. The fact is if it isn’t diabetes causing your gastroparesis, chances are you will never know what caused it.
Like I said before I was having issues far before my youngest daughter was born so I can rule out C-section as my cause. I am not completely throwing out the diabetes reason either. Even though I am meticulous about my diabetes there are always unforeseen complications the disease can cause. In short this is not your fault. This didn’t happen because you are a bad person, which I am sure you are not, it just happened. There is no reason to beat yourself up about that high blood glucose reading that one month or eating that slice of birthday cake. Too often we play the blame game for our health and we need to stop doing that.
Idiopathic gastroparesis, does that sound familiar, means the doctors have no idea why you have gastroparesis. If the doctors have no idea then there is no way you can expect to understand the reasons why either. Of course there is always the odd man out and that would be gastroparesis caused by medical accident, such as a surgical mistake. In that case you know exactly what happened or at least you have an idea and I urge you to look further into it.
Most times gastroparesis is very much the luck of the draw. I know it is horrible, the constant pain, nausea, and vomiting are sometimes too much for me as well. Food is a big part of our lives, even if it wasn’t before it is now. So much of life with gastroparesis is making sure we are eating the right thing or that we have the right food when we go out so we can avoid the pain and nausea. Sometimes this can have a negative impact on enjoying life but I have found that having a few pouches of pureed fruits and veggies that I can grab and go with helps a great deal. I know we all hate to think that “baby food” can be a good option but it can. I recommend having a few on hand.
Basically gastroparesis sucks and it sucks when you or someone you know has it. My goal is to help raise awareness of this disease. I would like your help, you can help by clicking the following link and signing the petition. The link will also help by sending emails to your congresspeople and the President . http://www.petition2congress.com/17206/petition-recognizing-gastroparesis-as-disability-by-ssa/?m
Gastroparesis How?!?
One of the questions I hear the most is, “How did you know you had gastroparesis?” In short I didn’t. I’ve had symptoms for years but I just had no idea what was going on. About five years ago I started having nausea that would not go away. So I went to my then doctor and was recommended that I have my gallbladder removed even though I had very few small gallstones. I had that removed and ended up back in the hospital for abdominal pain thought to be caused by the surgery. I now believe those were the first real pangs from my gastroparesis that I was experiencing.
After that I started noticing spikes in my blood sugar. Not just small bumps after I ate but giant leaps hours after I had eaten. One particular day I remember I called my then doctor to let them know my blood sugar had spiked to 380 six hours after I ate one corn dog. A corn dog! Let’s have a nutrition lesson here the average corn dog has about 33g of carbs, there is no way a 33g of carb corn dog could raise my blood sugar 280 points, ever! My then doctor’s associate told me to calm down, not take anymore insulin and drink lots of water. No sense of urgency there. She said that the corn dog likely raised my blood sugar. Keep in mind this was six hours after I ate. I then told her she was “full of bologna” and I was dismissed from the practice. Heaven forbid in America you demand appropriate healthcare and research when odd things start happening to your body.
So after five years of pain, strange blood sugar spikes and frustration with our medical professionals here in my home town I finally got a PCP that was smarter than the average medical bear. My advice to you: if you feel there is something wrong if you have pain or abnormal blood testing results, do not relent. You have the right to decent medical care. You have the right to have your symptoms researched. That is what we pay medical professionals for, to help us discover what is going on with our bodies. I am telling you now I am glad my now PCP listened to me. This is a journey that I am on and I want to be able to help others. Help me raise awareness by signing our petition and letting your President and congress people know: http://www.petition2congress.com/17206/petition-recognizing-gastroparesis-as-disability-by-ssa/?m
Gastroparesis, What?!?
Gastroparesis, what in the world is that? I could bore you with the clinical definition but in short this is a disease where the stomach slowly becomes paralyzed. Why am I writing about it? Well I recently joined the nearly 5 million Americans that have this disease and let me tell you the experience is much different from the definition.
Definitions are nearly almost cut and dry no room for question, but living gastroparesis is anything but cut and dry. I’ve known something was wrong for a while because I would get very frequent nausea and vomiting. In fact it was becoming so frequent my PCP actually brought the fact to me when I went in her office for another bought of vomiting. “Pattycakedoll, you seem to be having this issue a great deal. I am setting up an appointment with a gastroenterologist.” Then whiz, bang, boom, I’m diagnosed with gastroparesis and here we are talking about it.
I just thought the kids kept bringing me home school presents of 24 and 48 hour stomach bugs that would sometimes leave me feeling sickish for weeks or months after. I thought the stomach pains were normal for after my C-section. Nerve damage can sometimes happen and my OB/GYN said it was normal. I couldn’t stand to have my stomach pushed on which when you have a toddler is a constant thing. There were days when all I would eat was a snack bag of chips or a bowl of cereal and then there were days when I felt as if I would be hungry forever. The day i went to my PCP and she said this to me I had lost five pounds from my visit three days prior. By the time I saw the gastroenterologist the next week I had lost an additional two pounds. That’s seven pounds in three weeks, but that isn’t too bad right?
Fast forward to nearly four months later and here I am typing this up forty pounds lighter. On average I have lost 10.5 pounds a month. Not too bad when you take in consideration that I am obese. The mouth sores however were terrible. The stomach acid was burning my mouth because I was vomiting so much. I was regurgitating after every meal and I use the word meal loosely. My PCP eventually had to prescribe a numbing mouth rinse just so I could get some relief. The stomach pain was so bad I ended up taking a strong pain pill, but I could not take that long term since it slowed the digestion even more. With the nausea, vomiting and stomach pain you can forget about working.
I tried to go back to work this month but to no avail. I gave it 100% though. One day I had to leave my training room and sit crying in the hall because the pain was more than I could take. I ended up getting a liquid medication that day to help make my stomach move but it did not work so great because later that week, same thing. I finally decided that maybe my gastroenterologist wasn’t having my best interests at heart so I called another for a second opinion on treatment.
That brings every one up to date. I’m going tomorrow for an edoscopy which should have been done before a gastric emptying test, I’ll go into that at another time, but it wasn’t. I just want to bring awareness to this disease because before I was diagnosed with it I had no idea what it was. I had never heard of it and I knew no one that had it. I have done tons of research on it in the four months I have known I’ve had it and I am hoping to share what I have learned with all of you. My blog has changed, no more artsy stories, no more bleak poetry, just gastroparesis. Why? Because I know there is someone out there right now where I was four months ago, scared, with no clue of what gastroparesis is, how they got it and what’s going to happen to them next. We are each of us different, there is no gastroparesis norm. You can have high motility but terrible nausea and vomiting or you can have no motility and never feel sick. Know that you are not alone and no it is all not in your head. We need a community and people to help us bring the word out.
Help me please by taking time to sign this petition http://www.petition2congress.com/17206/petition-recognizing-gastroparesis-as-disability-by-ssa/?m= Many of us with gastroparesis cannot work due to the pain and other associated symptoms. Please help raise awareness.
About Love
In my life time I have only truly loved three times, romantic love. Every time I do open up and love, those sneaking insecurities come back. I will not lie, I hate feeling insecure and I wish I could stop feeling that way. When this happens I hold on for dear life and end up pushing that loved one away. I feel it now. I know what will happen and I know there are friends that would say, “Tricia, that is a self-fulfilling prophecy.”
If it is I wish I could let go of this feeling. All it takes is a word and the flash of green enters my body and worms its way to the center where it sets up and waits. It is waiting now, it is there and there is nothing I can do about it. Hell, there is nothing anyone can do about it. Every word spoken could be perfect and precisely the thing I need to hear. Every hug or kiss could be timed just right and it would still be there. The fear that it brings is paralyzing. It is as these times I find myself shutting down emotionally, throwing up a make-shift wall to protect what part, if any, of my heart that has not been touched.
Then comes the questions; “What’s wrong? You are so quiet, is something the matter? There is something on your mind, what is it?” How do you tell someone loving them scares the shit out of you? How do you say that the only fears you have in the entire world are death and losing the ones you love? The truth of it is, I never saw the point. I have never understood why we are here making connections and then we die. It all seems so pointless. Why does it matter?
I could guess all day long why these connections matter, but I would have no idea where to start. I do not believe in a heaven, I barely believe in an afterlife at all. That’s just the thing, in my book it is black and white; alive or dead, there is no in-between. With that being said, all I see is loving someone and one of us getting hurt when the other eventually and inevitably dies. Then what happens to that love? Where does it go? How do you learn to put it away and be grateful for the time you had? I never learned that.
As a child I was told I would live forever, no lie. Being raised a Witness really fucks with your self perception. I can clearly remember my mother telling me that we were in the end times and that when they came the faithful would live forever. As a witness there is no heaven and no hell, there is just alive and dead. Eventually the end times will come and Christ will resurrect the dead to live forever on paradise on Earth. How twisted is that?
I had faith. I used to have a never-ending supply of faith, and then I woke up and realized how crazy all that sounded. Then I did research and found Charles Taze Russel. If you have no idea who that is, you should look it up and prepare yourself for a wonderful ride of fantasy. When I read about Mr. Russel I lost all faith, it was shattered. Faith in religion and faith in people. I cannot have faith in a person when it is so clear to me that people are not naturally good. People are naturally deceptive. We all create a web of lies to keep ourselves content.
All I see when I look at the world is a giant web of lies that if I found the right thread would unravel and fall apart. How can I keep the flash of green, that doubt, uncertainty and jealousy, out when it is all I can see? I want to be able to trust that love is enough. I want to have faith in those I love, but my faith in those I love has been shattered so completely that I would have no idea how to start.
My dad left when I was twelve. We had gone to visit my Nana and he literally brought me back to my mother and left for Illinois that night. I saw him so few times during my teen years. I have seen him more as an adult than I ever did as a teen. I could never call him because he never knew what to say to me. Shortly after he did that mom had to start supporting us on her own. That meant a job where she traveled. Boy, did she travel. She would be gone for a week at a time. Maybe as a teen I did not need her there as much, but it would have been nice.
I feel that every one I have ever loved just leaves. They all have their own thing they need to take care of and I become the background. I have fought for those I love, I have cried for them and I have broken down when I could not find the right solution. I was so angry as a teen. I was so alone, so I learned to be alone.
Alone there is only one person you must have faith in. If you cannot have faith in yourself then why even go on? Mom says I am never alone, I always have a boyfriend. Be that as it may, I am always alone. I may always have a boyfriend, but they usually just fill up a space not a need. When someone takes the time to try to fill that need, it scares me. The green creeps in and I end up running scared. After all, if I leave first they cannot leave me.
What happens next? Do I run or do they? I have never been good at being honest because what I think is so harsh that every one I know would be in shock to hear any of it. This is me being honest; I could run right now and break my own heart so that I could save the pain of them breaking my heart for me. I have, in the past, done this and I did not lose any sleep over it. I literally cut and ran to avoid being hurt by someone else. I hurt them on purpose, to save myself the pain. I hate that I did that, but it is done. I will not go into detail because I am honestly ashamed of what I did.
So many relationships and all I ever said was I hated being someone’s back burner babe. What I never said is that it was comfortable there. I have always wanted more, but the more is what scares me. On top of that, when the more is not constant the green sneaks in. However I am not totally hopeless. When I love, when I am truly there, when that green is able to come in, I take that chance. I let go of my blanket and leap. Then I am stuck here writing because I can never find the right words when I speak.
What’s wrong? Why am I so quiet? What’s on my mind? I am scared to death. I am afraid to love because I am afraid to lose that person, whether it be to death or to something else, I am terrified. I cry myself to sleep most nights because I have no idea why on Earth I am letting myself go through this. I have no idea why they stay. It is beyond me to think that they could possibly love me as much as they say they do and then they show me and I want to run. I hate that I want to run. It makes me so angry with myself but it is what I have always done. I am done with running. I am so sick of running so tired of breaking my own heart. I do not want them to break it for me. I want, for once in my life, for my faith in a person to not be misplaced. I want that faith to be worth it. Even though I feel I may be sorry for keeping that faith here I am holding on for dear life fighting the urge to run.
Behind the Smile
I just need to say this and get it off my chest. Sometimes I feel so betrayed and then I realize the only one I have to blame is myself. The betrayal is always of my own making, I betray myself. Every now and then I catch a glimpse of her in the mirror and I want to bash her face in. Not that it would do any good since she is just the woman I used to be.
The woman I used to be stayed with her husband for almost three years while he beat her and openly cheated on her with his assistant manager.Occasionally she pops in to make sure I know just how much I have stayed the same. She whispers in my ear those words that kill me, the ones that cut, “You are nothing and that is all you will ever be.” When she says it I feel it and then I live it. I want to turn her off. I want to never see her again as long as I live, but she will always be there. She’s right behind the smile.