I shot for the sky, I’m stuck on the ground…

The sadness always follows a hard blow.

I know these feelings won’t last forever,

but it feels like it’s never going to get better. 

I feel like I am never going to get better.

It doesn’t help that I have been green with envy lately. One of the support groups I belong to for the compression syndromes has had multiple members just recently complete surgery or are scheduled to have it done soon. Despite the long recovery time, not to mention the pain and time spent in ICU, I can’t help but feel a twinge of jealousy. I’m happy they have doctors that listen to them and are willing to do research. And that they will hopefully be getting better. But I can’t help but WISH that was me.

Yes, I said it.

I am in fact JEALOUS of other people who are sick

and having surgery.

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Am I absolutely crazy or what? 

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I know I shouldn’t compare myself to others, but really, though, I am just sad that I feel like my doctors aren’t concerned about how this illness is affecting my whole life and that it seems to be getting progressively worse. Maybe that’s unfair to say, but it’s how I feel.

I mean yes, they’ve finally run some tests and tried medications, but nothing has made a difference in how I feel. There has been no improvement or relief thus far. Not everything is being documented in my medical records, according to the notes I am perfectly fine (just like my blood work). When I do get abnormal tests, they are blown off as insignificant. How can I not be sad?

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I had to put my rabbits up for adoption (still searching for a home) because I can’t clean their cages adequately anymore. My hands are so raw from all the rashes, they hurt to hold anything (even typing on the computer causes pain). My joints are so stiff and I’m too weak to carry the giant cages outside to the trash. I feel like I am falling apart.

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All I  want is to feel better. I’m willing to do or try anything to have one day of comfort. I just keep feeling worse each day that goes by, but no one besides me seems concerned about this. I’m so sick every time I eat. The pain, especially tonight, is so horrible it HURTS to breath. With every inhale I take I feel like I am going to throw up. I’ve only eaten a handful of tortilla chips today because nothing else will go down. How is this ok? or normal?

Must just be in my head then, right?

I’ve tried to take my mind off my sadness by attempting  the tricks the cardiologist recommended to help with the POTS, through water and salt loading (drinking tons of fluids and eating/drinking large amounts of sodium), and low-grade exercise. So far, I haven’t noticed much a difference, but that could be due to the fact that my stomach doesn’t seem to want to cooperate with either food or water intake these last few days. I’ve also been “running” on the elliptical for about 15 minutes a day. Even though I am not “pushing myself” too hard, my heart rate exceeds 200 b.p.m in less than 5 minutes. Shortly after, the pre-syncope comes and I have to lay on the floor until my heart rate goes back down. Today, I decided to check my blood pressure after working out. I waited until I had sat for 10 minutes or so, and my blood pressure read 28/26, with a heart rate of 135. I’m pretty sure I should be dead, according to the chart. And yes, I ran it twice because I thought it was an error. I am not sure how I was upright then, but definitely I feel the effects now.

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I am not sure if I should keep going with it or wait until my cardio tests come back. I did finally get an appointment with my primary care physician for tomorrow to get another referral to vascular surgery. After three days of calling and getting connected to the answering machine (that has been full since Friday – and yes, it was the voicemail of no return as well), so I drove down to the office to make an appointment. Yes, this is absolutely ridiculous, but at least I finally have an appointment. More testing on Wednesday in the hospital. On the bright side, at least some of the doctors are still trying. I’m just so tired at this point, I”m ready for this all to be over, but it doesn’t look like that will be the case anytime soon.

I’m sorry for the depressing post, but I just needed to get this all out of my head.

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Living with a chronic illness isn’t always about the fight to be strong.

Or motivating others.

Sometimes the hardest part of the fight is just getting through the dark times.

The times you’re in so much pain it hurts to breathe or even cry. 

Luckily, these feelings don’t last forever…

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“Hang on, when the water is rising

Hang on, when the waves are crashing

Hang on, just don’t ever let go…” (Plumb)

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Ultimate Survival Guide For When Everything You Eat Makes You Sick: Trigger Foods

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Eating for me is a complicated process. I have to think in-depth about the effects of what I’m about to put in my body and weigh the pros and cons about how it’s going to make me feel. I also need to know what’s in it to see if it will call any type of allergic reaction. In the last twenty-four hours alone, I had mild anaphylaxis twice. Not sure if this was from my swollen lymph nodes that have now moved farther south into my neck or if it was caused by the food. Seeing as I don’t eat a whole lot or a whole variety, I could have easily developed an allergy or reaction to food that I used to always eat with no problem, but suddenly can’t have due to the lack of exposure I’ve had to it in recent times. Add on top of all of this almost never experiencing the act of “feeling hungry” -and only know it’s time to eat when I’m weak and about to fall to the ground.

Considering my list of trigger foods is way longer than what I can currently consume, without becoming ill, it’s easiest to have a list of the things I can eat. I will say, though, it’s an ever-changing data base and is adjusted to how I feel that day. For example, I used to live primarily on vegetables and fruit since almost all meats hurt my stomach. Then this past January, suddenly, I stopped digesting any part of my vegetables. It would go in and come out the same. So off the list it goes and time to readjust. So what is one to do?

Step 1: Keep in stock the basics.
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Mint is great at helping all kinds of ailing stomach pains. I always make sure I have some on me, as well as next to my bed for when I wake up with severe nausea and can’t move without wanting to throw up.

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Ginger Ale is a staple that I keep in my house for the occasions when I really need it. I’m personally not a fan of “real” ginger and “ginger mints”, as I think the taste is too strong. I’m more nauseated by the strength before it has time to help, but I know it works for a lot of people. Personally, I like the store brand soda’s like Canada Dry and Seagrams, although they do have sugar and can upset your stomach even more. You just have to see what works for you.

saltines

Oh saltine crackers. You have been my hero on so many occasions when I’m unable to digest anything. Salty, bland, and simple.

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Also, salty, bland, and simple. Plus they’re not as “dry” in your mouth as saltines and you can easily break of tiny pieces without making a mess like you would with crackers.

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I know this seems like an odd choice for when your nauseated, as it’s greasy and not very healthy. But when I’m having problems with acid in my stomach, have had diarrhea, or  am feel dizzy and dehydrated, these chips are plain but loaded with salt. Lots of salt. If you can follow it with fluids, then I notice improvement with retaining fluids in my body. 

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Since we’re talking about water and water retention, we all know that water is essential in life. Being chronically ill, water is also important in keeping healthy, hydrated, and balanced. I try to drink alkaline water when possible because of all of its health benefits, but any water will do. 

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Obviously, for hydration and electrolyte balance. Often when you lose fluids quickly when you’re sick, the first thing you want to do is drink water to stay hydrated. I used to only drink water (and coffee) but my eyes would constantly twitch and I’d still feel awful. My doctor told me it was from the effects of not replenishing my electrolytes. I was out of balance and water only continued to flush my system. I prefer the G2’s, as they are lower calorie, less sugars, and are not as strong as regular Gatorades.

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For days when I can handle more substantial food, I like mashed potatoes. Actually, I love ALL potatoes, but the instant potatoes are easy to keep in the cabinet. I find if I buy mostly fresh foods, then they expire or go bad before I feel good enough again to eat. 

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I also keep these handy for the “good” days. They don’t hurt me too bad, most days. And they last on the shelf a long time. They fast and easy too.

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Last but definitely not least. Now I know caffeine can cause different reactions for everybody, but I need my coffee. It helps keep me going on those days I didn’t sleep because of pain or have to fight throughout the day to make it through all I have going on. Luckily, this is the one thing that doesn’t bother my stomach. Sadly, it’s a large part of my daily calories, but it helps keep up my current weight.

Step 2: Try an elimination diet and keep a food diary.

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If you are not sure what is causing the pain and discomfort after eating, try eliminating pieces of your normal diet to see if you can pinpoint the problem. Keep a food diary like the one above. Track everything and read the nutritional facts of what you are eating. You may not know that something in it can be a trigger for your symptoms. Share it with your doctor, maybe they can notice a pattern that you may not have even thought of.

When I started having abdominal pain again, six years ago, I tried multiple elimination diets: Gluten Free (even though I tested negative for Celiac’s Disease), Lactose/Dairy Free, Low Sugar, High Protein, etc. There’s so many allergies out there that can be the cause of excruciating symptoms. “The eight foods included in food allergy labeling account for an estimated 90 percent of allergic reactions. These eight foods are:

  • Milk
  • Eggs
  • Peanuts
  • Tree nuts (such as almonds, cashews, walnuts)
  • Fish (such as bass, cod, flounder)
  • Shellfish (such as crab, lobster, shrimp)
  • Soy
  • Wheat

Most food allergies start in childhood, but they can develop at any time of life. It isn’t clear why, but some adults develop an allergy to a food they used to eat with no problem. Sometimes a child outgrows a food allergy only to have it reappear in adulthood.

If you have a food allergy, you’ll need to avoid the offending food. An allergic reaction can quickly put your immune system into a state of emergency, affecting many organs in your body. For certain people, even a tiny amount of the food may cause symptoms such as digestive problems, hives, facial swelling or trouble breathing.

Some people with a food allergy are at risk for a life-threatening reaction (anaphylaxis) that requires emergency treatment.

Don’t ignore a reaction that occurs shortly after eating a particular food. See your doctor to find what’s causing it. Even if you’ve had a relatively mild reaction in the past, subsequent allergic reactions may be more serious. Get emergency treatment for any severe food reaction.”

Reference: The Mayo Clinic

Step 3: If nothing else works.

Or if you having a really bad flare up, try a low residue and low fiber diet.

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This a great list to get started with. It’s not meant to be a long-term solution, but eating something is better than nothing, and following for a few days gives your digestive system time to relax and reset itself.

Step 4: Look into other options.


Try Juicing.
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Or the FODMAP diet.

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It has been gaining a lot of attention recently for being one of the best diets for functional disorders.

Also, when all else fails and you can’t find relief, meal replacement shakes will at least get some essential nutrients to keep your body going. 

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There’s so many on the market now. Some are better than others, but find the best one that fits your budget and you can stomach on the bad days when you need emergency nutrition.

But when push comes to shove, and nothing works

and you truly can’t maintain a normal weight or nutritional balance

without becoming violently ill,

then there are more extreme options available, but only by your doctor:

Feeding tubes (with difference placement depending on need/situation)

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Note: Not all of the things I listed will work for everybody, but these work for me. But no matter what that is, keep it in the house at all times if possible so that if you’re having a bad day, it’ll be there waiting for you and you won’t have to fight the pain to get what you need.


Also Note: I am also not a doctor or a dietitian, so please consult a professional to discuss if any of these suggestions are right for you and your condition.