Been a long time!

Wow, I had not realized how long it had been since I wrote here! So much has happened. 

Its been a long road, where to start. 

My pain is being managed better.... After much argument with my Dr! I was on Opana ER once a day ( 30mg) plus 15mg morphine 3x a day. Well, the Dr decided he wanted me off the morphine. Ok, he put me on the 30mg Opana ER as well as a 10mg Opana ER. It worked pretty well! 

Well there was a problem with pharmacys getting Opana, ( and mine failed to mention that they could get the generic!!) So of course my Dr was out, so the referring Dr just switched my prescription mg for mg to morphine! Now if you don't know about Opana, it is 10x stronger than morphine! So I was effectively cut to 10xs less all at once. So when I went back to see my Dr to have him up the doseag, he wouldn't!!! He said I was just "hypersensitive" to pain!I wanted to show him how hypersensitive his face was to my fist! 

About 3 months later I found out that the generic Opana was available, with some arguing the Dr finally put me back on it! Yay!!!  Pain relief once again! At least managable pain relief!

Also, for the last 4+ years I have had some extreme stomach issues. I was told ulcer, gastritis, Gastroparesis, and even accused of being anorexic/bulemic! I went from 135-140 down to 92 pounds......

Well,I had seen something in my hospital chart from 2013 during a heart issue called SMA. I kept asking about it and kept being blown off. It showed up again during another test.  Finally I told my Dr to really look at it. ( I had to literally show him how to find it on his own computer!!!) And he went hmmmm. So I went for tests, MRI, CT scan, and lo and behold I have a rare condition called SMA syndrome. Superior Mesenteric Artery syndrome. Its a chicken and the egg as to whether weight loss causes it or it causes the weight loss, what causes it in the first place. Trauma (like a car wreck, severe blow to the abdomin) has been listed, born with it, so many theory's., But this is what it is in a nutshell; the fat pad between the Mesenteric Artery and the Duodenum goes away and they become entwined causing the duodenum to become constricted. It causes severe weight loss, malnutrition, nausea, inability to eat, vomiting, pain, and so much more! Treatment is so varied, like me, I finally was put on Feeding Tubes called a GJ tube. One goes into my stomach and the other into my small intestine. I have my pump run all night and it goes straight into the small intestine. 

So far I am one of the lucky ones. I have gained 20 pounds so far! But I still cannot eat much because I still get so nauseous and it's 50/50 whether I will keep it down. If I reach my goal weight ( 130-135) but still cannot eat, I will have to have surgery. They will either surgically separate the Artery and Duodenum, or cut and slice to bypass The duodenum all together.... 

The mortality rate of this illness is 1 in 3 die...... So when I say I'm one of the lucky ones I mean it. 

So many comorbid illnesses come with it, like Nutcracker syndrome. Same Artery, but this time it constricts the left renal veins. I have that as well. 

There is Marfan syndrome, Edwin Barr( I think that's how it's spelled) SIbo, Gastroparesis, and again so many other things. 

I'm just so thankful to still be alive! I am finally getting my energy back, I just had my tubes replaced with a small low profile one that doesn't show near as much under my clothes!

There have been bumps of course, i was told the tubes my be permanent.... I refuse to believe that! I also developed an intolerance to the feeding formula and am waiting for a new type, I still deal with a lot of nausea on a daily basis. But again, I'm here! I'm alive!! I'm going to beat this!!! There are support groups on FB SMA awareness, and a couple of others. It was thought, and some reports still say, that there are only 400 cases....the truth is there are between 48,000-98,000!!!! Yes that's a big speed, but awareness is growing every day! Contact me if you are interested in learning more. 

Again, I have survived endometriosis at a time it was the dark ages ! Lol with a hysterectomy at age 27

I survived a heart attack at age 47.

A horrific car wreck that totally rearranged my life in 2002.

Now this horrible illness. Like everything before, I will beat this! I have amazing support, family, love, and so much. I am truely blessed.