Domperidone...Again

Yesterday I trooped back in to see my surgeon, Dr. Marrujo, to be checked up on as far as my health goes. Since having Alfred--my pacemaker--turned off in February, I've slowly gone down hill, though it's really just been in the last six weeks that it's been really noticeable. We discussed the fact that my bloodwork came back normal--no real shocker there--and what the next step should be. 

Domperidone. 

I've taken this medication before, albeit, about five years ago, and it didn't do anything for me except make me feel weird. Since, five years ago, I had to get it from Canada and it wasn't necessarily regulated properly, I'm going to be seeing a Dr. Lim who is running a trial here at Kaiser to see if, with the proper dosage, it does what it's supposed to do. 

Like most any other person with a Chronic Illness I'm like "great ANOTHER medication". You really just want to be done with everything, if I'm totally and completely honest with you. You get incredibly tired of having medications upon medications in your nightstand and being in different trials and it getting you nowhere. 

I. Am. Just. Tired. I'm not giving up! I'm just tired. I'm sick of losing weight and gaining weight and losing it again. I'm sick of my hair dying. I'm sick of the dry skin. The insomnia. The body pain. It's just a lot to handle when all I want to do is help other people. That's what I LOVE to do. I want to help others, not be helped and it sucks. 

Pity party over. 

So now I wait for Dr. Lim's office to call me so that I can meet with him to make sure that I qualify. Then, I guess, I will start Domperidone...again. 

Musings of A Girl In Pain At 1AM

It's 1:30AM here in Southern California and I'm lying in my bed "wide awake" because everything burns and hurts. Every joint. Every muscle. EVERYTHING hurts. My jawbone and teeth ache. My hands burn as if someone is trying to set them on fire. The pain is uncanny! Even my poor little pinky toe...poor little fella! 

I do not, that I know of, have fibromyalgia. Friends have asked if its a possibility and I just say:: No, I'm getting old and I don't eat! Lack of basic nutrition will make you she in places that you didn't know we're possible of even aching--like your hair. 

In the last 3 weeks my Gastroparesis has been at 100%+ and food is a definite enemy. My mantra has been "Food Is Not Your Friend", but of course it is and it's just my cranky stomach telling me otherwise. I LOVE food and I love to eat and cook it, but right now, I want nothing to do with it. It makes me physically ill, I barf it up, we are not friends. Because of this I haven't eaten much more than handfuls of crackers at a time (last night I ate some mac & cheese!) and have lost at least 7 pounds as a result. 

On Wednesday I saw my surgeon, Dr. Marrujo, thinking he would probably turn my gastric neurostimulator Alfred back on, he didn't. He said, because it seems to not really have done much, if anything for me, and I'm doing so poorly now, I am at a crossroads as to what to do next. He suggested seeing a Dr. Lim and trying Domperidone, but I've tried that before and had no success. I was honest and said:: I don't often cry about my situation but I cried last week. Im tired. Im tired of being sick. Im sick of being tired. I just don't want to do this anymore. I don't know if I qualify for getting tunes and I don't know if that's what I'm asking for but I'm just done. He questioned what I meant by "tubes" and I said:: for hydration...for food...for something. I'm just done. I just want to go to sleep and wake up not feeling like this. 

I'm thinking he might have thought I'd lost my marbles there for a minute. 

Anyway, he changed my as-needed pain medicine from Tylenol with Codeine to Norco to see how that goes and had me do blood work and is going to see me in two weeks. In true Spoonie fashion my blood work came back normal--I can see the results online--and here I sit, aching like I've gone 76 rounds with Mike Tyson. 

I KNOW that I'm lucky that I can function as well as I do, but I can feel it slowly disappearing as the days and weeks go by. Maybe what I need is a break from work, which is soon coming. Summer break starts in a week. But, at the same time, I have no idea what I REALLY need--besides a LOT of prayer. It's all so frustrating. It's all very tiring. I just want the pain and the nausea to stop. I want to go to sleep and wake up refreshed in the morning. 

That's not too much to ask for, right?

Coming to Terms With Your New Diagnosis

I've been diagnosed with Gastroparesis for five and a half years now, so it's been a while. I'm not an expert and I'm not licensed in anything, so the advice I give below is just from my own personal experience; however, I think having trotted down this road for some time now, it gives me a margin of "expertise". Along this road I have also been diagnosed with a couple of other diseases or conditions along the way, just to keep life a little extra spicy. Because one disease isn't enough!

So here is my (TOTALLY non-professional) advice on how to cope with being newly diagnose:: 

1. TAKE TIME TO SOAK IT IN

Just take the time you need to take it in, whether it be to shed tears, sleep on it, laugh about, to absorb it, whatever the case may be (everybody is different). Take the time you need to go home with the information and the diagnosis(es) your doctor has given you and sit with it. Ponder what this all means to and for you. Often times you've already been dealing with this disease for months to years, just without a name. Now it's just taking in the fact that you have a name to stick with all of the turmoil you've been experiencing. 

2. RESEARCH IT

After you've absorbed your diagnosis, take any information your doctor has given to you and read it thoroughly. After that, jump onto the Internet and see all that it has to offer...the good, the bad, and the ugly. Life is NOT going to be all peaches and cream with your disease/condition, so why live in a fantasy world, right? 

3. SHARE WITH FAMILY, FRIENDS, AND LOVED ONES

This is a step that is, sometimes, the hardest for newly, and old-ly (did I just make up s word?!) diagnosed to do. Those  who are not sick do not understand Chronic Illness, BUT how will they understand if we do not share what it is our illness is and how effects our lives? 

I, personally, am as honest as I can be with everyone in my life. I tell them about food not staying in, food staying in too long (if you catch my drift), being in pain, wanting to pass out, being tired, dry skin, dying hair, and all of the other parts that go along with my diseases. There's no other way for them to understand what it's like to be in my body if I don't tell them. 

4. FORGIVE YOURSELF

Every day is not going to be your day. Every week is not going to be your week. You're going to have missed plans, disappointed friends and family. It happens. But they do not (fully) understand the battle that you are fighting with your body every second of every day. Forgive yourself when those missed opportunities happen. Sure, you'll feel sad and disappointed, but you'll come to realize that you're ability to get up tomorrow is WAY more important than going out for a drink with Bobby tonight. 

5. ELIMINATE THE HATE

If there are people in your life who continually being you down, hate on you for your disease(s), your inability to go out the way you used to, etc despite you having explained why, then it's time for you to have a serious chat with them. After said serious chat and no change, give them one to two months to get their act together and then give them the boot. Your health is ENTIRELY too important to waste time and energy on negative people in your life who don't want to take the time to try and understand the changes in your life. 

6. FIND OUT WHAT WORKS FOR YOU

Everyone, the doctor, the nutritionist, the physical therapist, the psychologist, your family, friends, people with the disease, people with family who have the disease, people who schlep holistic stuff...EVERYONE will give you advice. It's all well meaning. It's all overwhelming. Find what works for YOU. It takes time. It takes failure. It takes experimenting. But do what works for you without all of the voices telling you what to do. 

Those are just a few of the tips that I have with coping with a new diagnosis. There are, I'm sure, more that I could come up with, but these are what I came up with for you all today. I hope that you find them useful and can pass them along!