*long story warning.* Hi, my name is Rema and I have SMAS- Superior Mesentric Artery Syndrome, a very rare syndrome at that, Gastroparesis (also rare) and my body is now not absorbing nutrients which is leading me to feeding tubes or a picc line for TPN until we figure out the next steps with surgery and my body decides to work again. Gastroparesis translated means "stomach paralysis" it's basically where the muscles in your stomach stop working and can't empty itself. I go 2 1/2 hours away to Danville hospital Monday for that, so fingers crossed! Three months ago, I would have never thought I'd be this sick. I'm not myself, my body no longer feels like my body, most days I don't want to fight anymore, but I know I have to because my babies need me, I just feel awful, so, so awful. I'd never wish this upon anyone. I know most of you have been wanting to know what exactly has been wrong, but it wasn't up until recently that we got official answers (aside from the same small findings over and over again) and so I decided to wait to talk about it. 6 long weeks of testing, hundreds of tubes of blood, countless amount of I.V's, so many scans they had to stop because I was getting too much radiation, losing over 20lbs in the first month alone, being in an out of the hospital, so much suffering, so many tears and scary moments, Isaiah also got suspended from work because of it all and has been out the past 4 weeks, so we've had no income coming in at all...but, we finally got an answer, which is all we wanted as things were getting bad, fast. I truly almost cried happy tears. Probably not an answer most would want to hear, but when you've had to suffer so bad for what feels like eternity, that's all you can do. Cry happy tears!!! Most kids don't live past 18 months with SMAS, but adults are a bit different and with the right steps and successful surgeries/treatments, have a much better chance these days living with it, but like anything, anything can always happen and puts me at more of a risk for future obstructions again. I have gone to sleeping normally to "sleeping" straight up against the wall with 8 pillows. I have gone from not using the bathroom, to going multiple times a day like clockwork waking me out of my sleep. I have been puking blood and passing out-i actually fell down the stairs a few weeks ago from passing out again, which was scary as I was home alone with the boys. and i also passed out another time while they were in the bathtub again, home alone with them. I thank God it was only for a short amount of time because my youngest could have drowned! I went from being able to hike for miles to not being able to walk a few feet on my own or being able to take a full shower on my own. Walking is a struggle, standing is a struggle, my body is just getting so weak. I went from eating all day and night long to not being able to eat or drink at all. A few weeks back, I was still able to drink about 4oz's of liquids a day throughout the day, even though it made things worse i sucked it up and delt with it. It was the same thing every night. Take a bite or two of food for the day and force some liquids into me, then laying down and trying to fall asleep as fast as I could before the unbearable pain started and leaving me feeling more sick than I already was feeling and a giant belly that looked like i was 9 months pregnant. But now, I'm down to absolutely nothing. No foods and now no liquids, not even an ounce. So this is where the TPN/feeding tubes come into place, until I can do it on my own again. It's sad to think I'll have to miss out on holiday dinners with family and my favorite thing I look forward to every year, the chocolate festival...anywho, back on track...I have an appt. with a specialtist 3 1/2 hours away at the hospital in Philly on Thursday who knows/is more familiar with SMAS and my gastroparesis, etc. This is really an important appointment for me. Now for surgery- they are deciding what to do as it can be done a few different ways. It is a VERY big, open surgery that isn't done often and recovery is months. Like all surgeries, there's risk for complications, but, this one is again even higher and any small accident can kill me instantly as they'll be working with my superior mesentric arteries, other major vessels/nerves and my aorta which leads directly to the heart. They will basically take apart and reconstruct the entire area where my duondum (part of my small intestine) is. Right now, mine is being is being compressed between the SMA and Aorta. That is also most likely what caused my obstruction last month. The surgery isn't always successful, but I'd rather try knowing I tried rather not having a means of life and die. If you made it through this, thankyou for taking the time to read my story. I will try to update as I go along or have Isaiah update for me if I cannot.
I originally didn't want to make this because I told myself it wouldn't come down to this point, but everyone was telling me to and so i thought long and hard about it and did it. I'm not one to ever ask for help as we always give when we can, but everyone made me realize that it's okay to do so. With no income coming in for the past 4 weeks have put us behind and I'm not sure when or if he will be going back, or what I'm supposed to do if he does as I can't be left alone anymore and need care for myself, along with the boys. I just can't care for them anymore and they don't understand. Levi is 2 1/2 and Xander just turned 1 so they'll only understand so much. I cry every day. I try not to around them, but sometimes I can't help it. Levi gets upset, cries with me and covers me in gentle kisses asking why I have a "boo boo" and Xander doesn't understand why I can't hold him anymore. It's just so hard! But I'm going to continue to battle this for them. My name is Rema and I am a SMA warrior.
All money will be going towards gas, tolls and medical bills not covered by insurance, along with parking. Every time I have to see the specialtist and surgeon in Philly, ontop of the $80-$100 in gas and tolls, we're charged $30-$40 to park, even with validation!!! Which is definitely not doable for us right now financially every time I need to go and I have appointments and procedures/scans weekly with different specialtists, multiple times a week all within one- 3 1/2 away, each way. Even just sharing this would be so very appreciated. Thankyou all again for reading such a long post if you did and if there's any questions I can answer, please don't hesitate to ask as I plan to be as open as I can about it all minus some things that i feel should be better of kept private. -Rema.