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027Hello everyone!  This is my first blog page so I’m still learning…..

In the next few weeks I’ll be posting a lot of information about superior mesenteric artery syndrome, a rare disorder that I have.

I hope you stay tuned for more ☺

 

 

Surgery

So……went to see my surgeon yesterday.  Looks like surgery soon.  He said we have given this 9 months to try and reverse the SMA on my own and I’m not progressing, so time for surgery.  Our original goal was 3 to 6 months, but I had to try! 

He will be doing duodenojejunostomy or DDJ which is easier than trying to say it…lol.  Basically he will be by passing the compression.  He said it’s not a cure but it will help improve my quality of life.  I sure hope so cause I’m ready for that to happen. 

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I’m nervous of course, but I know God is there and will continue to take care of me.
Hopefully he can do it laproscopically, but he said he’s have to wait and see, depends on scar tissue from previous surgeries and the severity once he’s in there.either way it’s ok, they are warrior battle wounds just to show I’m a fighter!

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Thank you for the prayers and kind words.

A Typical Day For Me With SMA

I’ve never been a morning person…ask anyone that knows me.  Now I’m really not a morning person because mostly I don’t sleep at night very well.  Its usually 3ish am before sleep even comes, and when it does it’s on and off and not restful.  So I roll out of bed, make coffee and takes me at least 2 hours to wake up (that’s on a good day)
On a not good day, depending on if I wake up with severe nausea or a migraine, or just pain, I may stay in bed. 
There is usually no warnings when the pain, migraine , nausea or even diarrhea, or constipation or vomiting might present.  Its hard to plan anything because you just don’t know.  I try to keep going with a smile unless it’s so bad I just can’t, then I retreat to my room and pray it’s just a bad dream and it will all go away when I wake up.  But alas it’s still there…..ugh!

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It’s so hard to explain to people why you can’t do or go somewhere, even if they know you well.  Family is the worse, I feel like I’m disappointing them and it breaks my heart, so if I’m even a little bit able, I put on my big girl panties and a smile and trudge on.

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UGH!

I m sorry I haven’t updated in a few days….I have some things in the works to post on some nutritious things to eat and drink.  I have had my own health problems and our family just found out that one of my niece’s has some serious health issues of her own she is dealing with right now. 
You know life doesn’t stop because shit happens but sometimes we have to put things on the back burner for a minute and do a lot of praying for each other!
So hopefully if I’m feeling well enough I’ll finish my post on some foods and drinks that I’ve been doing

Thank y’all for your patience

A Small Victory

I have been really stressed out the last week about this disability with my work.  I called my doctor yesterday and asked if he could send something to my job stating whether I could go back to work.  My surgeon released me because I haven’t had surgery so it was up to my GI Dr now.  So I called my job this morning and my Dr sent them something……very limited lifting, and should only work 15 hours a week as tolerated…..needless to say I won’t be going back to work anytime soon….now to start over with the disability part.

Disability ups and downs

I have been on short term disability through my work for 6 months due to SMA.  I got a phone call yesterday that they denied long term disability.  They had a disability nurse look at my records and said since I am maintaining my weight I’m fine and can go back to work…seriously!
I politely explained to the lady on the phone that the condition I have is rare and that most doctors don’t know anything about it, and how do they expect their nurse to be an expert on it.  I also explained that weight is NOT the only symptom….there’s a host of other things….not being able to get out of bed because one is in such pain, how many underwear you have to buy because you can’t get to the toilet in time, the nausea, vomiting, bloating, malnutrition, weakness, and it goes on and on!
She was very sympathetic to the situation but that doesn’t change the fact that all the shit we go through, they don’t care about. The ER visits because of dehydration and pain and migraines.  The feeding tubes, the replaced feeding tubes, being the medical industries guinea pigs….I guess that’s why they say they “practice medicine”.
I am just so over fighting everybody to get them to understand!
Sorry for ranting but it’s so frustrating!

My personal journey so far!

Some of you know me well, some may know me through my support groups, some may not know me at all.  I want to share my journey today since I was diagnosed with SMA.
I was diagnosed with SMA in September 2015 after a going to my oncologist at Baylor in Dallas for my 1st cancer check up after having a volleyball size tumor and both ovaries taken out, that turned out to be non invasive cancer.  My oncologist told me the cancer had not returned but there was something else.  My duodenum was dialated to 6.6cm….he suspected SMA and sent me to a GI Dr at Baylor. I had no idea what this SMA was and so I googled it and was scared to death! The GI Dr did an endoscope and verified SMA.  She then sent me to a surgeon.  The whole time my head was spinning!
I go into the surgeon and he’s very nice, very knowledgeable on SMA and reassures me.  My first step was to try and gain weight (i had lost 35 pounds in like 6 months).  So lots of protein, lots of calories, small meals several times a day, positioning(laying on my left side with my knees to my chest) for 20 to 30 minutes after eating.  A lot of soft foods that would go through the compression easily…..mashed potatoes, yogurt, smoothies, shakes….that did not work, I lost more weight.  By Oct 2015 I was at 94 pounds.  My surgeon ordered an NJ tube(feeding tube that goes in your nose, down the esophagus, past the stomach and past the SMA compression into the intestines. 
This in itself was a very strange experience for me, I was awake during the procedure which was done by interventional radiology for correct placement.  After placement you’re basically ready to start feedings.  For the first month my nutritionist had me on bolus feeds, which I found out I was not to be on because it can actually hurt the intestines rather than help.  So then the Dr put me on a feeding pump 24 hours a day.  This helped a lot!  I gained up to 103 pounds in 3 months. I could still do my soft foods by mouth as well.
In Feb 2016 I had an upper GI with small bowel follow through to see how the SMA was doing.  The duodenum was now dialated to 8.8 cm.  In March 2016 I had another endoscope done.  They removed my feeding tube when they did this.  The compression still there.  Also found gastritis and acid reflux. They have not replaced the tube I am maintaing my weight at this time.  Still eating the soft foods…I have added pea protein to my diet for my muscles and nutrition. I added aloe Vera juice for the acid reflux.  I also take a liquid vitamin.  I take meds in liquid form due to the compression.  I still do positioning as well. 
The most recent Dr visit which was Friday…..I have been having trouble with severe nausea, bloating and diarrhea.  I have to get a SIBO (small intestinal bacterial overgrowth) test done, seems SIBO is common with SMA( because we can’t digest well,)  and a fecal test.  Will update on that when they are done.

Not all of the SMA warriors are the same, we all tolerate different foods, meds, and daily things differently.  Please always check with your doctor before starting anything!