2015 Off To A Busy Start

I started 2015 out by getting round three of Botox injections for chronic migraines, going to my primary care physician for my monthly check-up and going to the rheumatologist. The good news is, I do not have Primary Sjogren's Syndrome so I do not have to begin immunosuppressive therapy. The bad news is, we still do not know what is going on. That is ok. I'm not giving up.

I have been consecutively losing weight for the past few months without an exact reason why. I lost six pounds from my appointment one month ago. My PCP said my BMI is right on the cusp of being too low. We reviewed my diet, I am eating all of the right things. My gastroparesis is so unpredictable and has been flaring up a lot lately. When GP is flaring, I pretty much know what foods I can safely eat, but even then I am not guaranteed. I do not get really nauseous, I just spontaneously vomit with only a second or two warning. If I overeat at all, it all comes back up. I listen to my body. When it tells me it is satisfied, I stop eating. I've been eating baby food to get more nutrients from vegetables in smaller portions. I am not sure why I am losing so much weight. My eating habits haven't changed from November to January. My PCP says I should try to find a favorite junk food that I can tolerate, and eat that because I need more fat and calories. I have lost over 30 pounds in the past 6 months. Below are a few pictures that I took about three weeks ago when I weighed a little more than I do now.

Sucking in to show the difference.

My yoga pants are not supposed to be baggy.

 The weight loss concerns me, especially because I am not trying to lose weight. I wish I knew what is causing it. I hope that it is just a really bad GP flare and things will even out once things settle down. I am not starving myself. I am not trying to drop weight. I think I look unhealthy. In these pictures, I am 15 pounds below my baseline weight. When I was really sick with GP in 2010, I only dropped a few pounds below my baseline weight; nothing like this.

The medical team told me I have had gastroparesis my entire life and they do not know why. I really am a medical mystery. The rheumatologist said she has been very intrigued by my case, because I have such a fascinating, difficult illness. She just wishes she knew what was going on exactly and if there was a way to treat it. We still don't know if all these illnesses are connected or if they are occurring independently of each each other. Either way, I keep on fighting and try to remain brave.

I continue to have seizures and "seizure like" activity. I have to use my cane for my right legged weakness. My right leg trembles if I stand and put any pressure on it. I am still determined to be as independent as possible. I am struggling but I keep the smile on my face. I am grateful for each new day that I have. I am not giving up hope. I cherish the moments. I know there is a reason why I am going through all these trials. I know there are so many people out there who have it so much worse than I do. I try not to complain too much, if I do, I apologize. I do have days that are better than others, but each new day is truly a gift for me.

I am so grateful all of my family and friends that have stood by me and helped me through all these battles. Every little thing helps. Thank you so much.

 I made the decision  to be more open about my struggles, not for pity or sympathy, but to help raise awareness and educate others. This has taken a lot of courage and bravery to do this. Originally, migraines were my biggest issue, as time has gone on, I have been blessed with other challenges as well. Sharing my story, my ups and downs is very therapeutic for me. I started my Facebook page and my blog after much coaxing, begging and support from my little girls.

https://www.facebook.com/amberandhermedicaljourney?ref=hf

I had no idea my page would grow the way that it has, and I am so grateful for all the supporters. I am just 10 likes away from 900 supporters. This is huge for me! I remember only a few months ago when I was wishing my page would get at least 50 supporters. I couldn't have done it without all of you and I thank you for helping me and supporting me along my way.  My invisible page helps me in so many ways. I draw so much strength and courage from others fighting a similar battle. My goal is to help people any way that I can. I hope that by sharing educational articles, videos, memes, personal experiences, etc. that people will have easy access to some educational material. I want people to know that we are all suffering our own battles that nobody even knows about, so we should treat everybody with love and kindness. I want to help make a difference in this world, even if I make a difference to only one person.. As I find ways to help myself, I hope that in turn I am in someway helping others as well.