It has been a long time since I made a new entry here; unfortunately, it is not because Colleen is healed and life for her is back to normal. Her symptoms have actually worsened a tad most days, and days that are defined as "pretty good" for her would be defined as "sick" for a healthy person.
There is always an inspiration behind my blog posts - something happens, and instantly a blogging idea goes into my brain, and off we go. This past week, I left on a trip to Boston with members of my family to go see Fenway Park (more on that in another blog post coming soon). Before the trip, I got into a random conversation with my niece about her baking prowess, and asked her to make me anything that has lemon in it (I can eat, drink, and sleep anything that has a lemon flavor to it). Of course, the conversation lead to Colleen's favorite type of cookie - the basic, yet always a fan favorite, chocolate chip cookie.
As you may have guessed, Colleen ended up with a batch of chocolate chip cookies. A simple gesture with very little planning involved - but sometimes, little gestures can go a long way - a long way to make a person feel at least a bit better about themselves, even as they battle a dreaded condition. No, the first gift one thinks about for a person with a bad digestive illness is a plate of cookies - Colleen will eat them at her own pace. That isn't even really important. Sometimes, a gesture to show someone you care or thinking about them can go a long way in improving the mental side of things - even if only for a brief moment or two.
Now, if you are reading this from afar, I am not necessarily suggesting you run out to your nearest bakery to get a cake for your sick family member. If they can't tolerate an occasional desert at all, then you really shouldn't feed the temptation. But there are a lot of little things one can do to make life feel a bit better - a bit more special - for a sick family member. Little things can go a long way - especially if the person you are caring for is too ill to do the big things you may have in your mind.
As stated above, Colleen's condition is not better - it is not improving. As always, you look at someone with a disease like this from the outside, and you may not even realize just how much pain they are in - Colleen is on the smaller side to begin with, and because she doesn't get the bloat that some people with digestive issues get, she may look just as healthy now as you ever remember her. As I have said previously, if someone has a cast on their leg, you likely will instantly assume it is broken. That person has a visual clue to lead you to what may actually be wrong with them. If someone nearby is sneezing, you may conclude they have a cold - or allergies. This time, your sense of hearing can lead you to a reasonable conclusion. There is no sense that can lead you to a reasonable conclusion about someone who is sick on the inside. They look normal, often act normal in an attempt to hide their illness, etc. There is no visual clue sometimes - often, no audio ones either. Someone on the street isn't going to walk up to her and ask "What is wrong?", because nothing even appears to be wrong.
But sometimes, we have to take a bit of a step back. Look hard enough, and you will quickly see that the person is not looking quite as "normal" as you would expect. There may be a look of defeat in their eyes - you may catch onto a vibe of despair, of frustration, anger - all kinds of emotions that sometimes you can figure out just by observation, even if they APPEAR to be normal.
Colleen has dealt with this condition for four years - she has been to at least ten doctors, various specialists. She has tried various medications, has seen a chiropractor or two, a holistic doctor, and a few scam artists who pray on the sick in order to put some extra money in their own pockets. (By the way, if you are a healthy person reading this and are saying "I would never fall for any kind of scam!", you may be in denial - a sick person has the mentality of "Well, maybe this actually will work - and I will never know unless I try it!" Yes, that is exactly what a scammer wants - but there are legitimate people out there who aren't scammers who still try approaches that don't work - so figuring out the good people who just can't help vs. the bad people who just want to take as much money away from you as possible can be hard). She has tried needles and aromatherapy - two tried and true methods that can get you real results - without any kind of relief.
Why is that? We don't know - but there is one very real possibility: We are fighting one thing, but the real problem is something entirely different. If your car breaks down due to a dead battery, and the mechanic decides to replace your muffler, the odds are that the car won't work. The new muffler may help the car in other ways, but it still won't accomplish what replacing the dead battery will accomplish: Getting the car to actually start again. That could be happening here - the things Colleen has tried (like the aromatherapy) are not likely hurting her system in any way - and could be improving something within her body as a whole. But it isn't fixing the PROBLEM, because the treatments she has tried are designed for another problem that she doesn't actually have. How do you figure out the exact issue Colleen has? We have been trying to figure that out for four years now. Maybe the doctor in Baltimore will get us there (We visit him again in July), or maybe he can refer us to someone else in his hospital who may start us on a new path. Or perhaps we are actually on the correct path, but keep choosing the wrong fork in the road. Whatever it is, things haven't improved - that much is certain - and Colleen is left to fight a disease with every ounce of her energy, while also keeping a smile on her face and a good attitude despite fighting a true demon inside of her.
As a loved one of someone with any kind of medical issue, you need to be your loved one's advocate. You have to make sure they KNOW you are on their side - that you care just as much today as you did a year ago. Or five years ago. You don't ever want your sick relative to have to worry about where you stand - because they have enough to worry about. So keep fighting along side of them, go to every appointment you can get to, and let them know every day how much you love them. In essence, you can be their chocolate chip cookie.
