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Pretty good, actually. I was just talking to my cousin and told her I hadn't had a major flare since I lost my first 75 pounds!
Back before my DS, the only thing that would work for me was prednisone, and you know how that makes you blow up! Now, Plaquenil is doing a great job for the lupus, and Lyrica is doing a great job for the fibro!
Of course, I think the weight loss helped them both, although I have to be careful not to overdo on the exercise. Mine is limited to aquacise, mostly walking the 4 foot warm water pool at the hospital's health and lifestyle center (read: upscale health spa), and using the water's resistance to boost the effectiveness of leg lifts and such. Since I'm only 5'5", my entire body is immersed in warm water while I exercise. The only way I got in was that they do have clinical memberships, which your doctor can help you sign up for, and that's only $55.00 a month. I never checked to see if my insurance would cover it, since it is a prescription, but I don't think they will. Otherwise, the membership is over $200.00 a month, plus there's an initiation fee. It is really a nice place, though, cedar lockers, a sauna, steam room, Jaccuzi and Olympic swimming pool as well as the warm water pool. They also have exercise classes, equipment, an indoor running track, juice and snack bar (great fruit smoothies!), and *free* coffee!
I'm gearing up for skin removal, Phase One (lipo to get the fat deposits out of the hanging skin) and Phase Two, actual skin removal from my thighs. I know, it's trauma, which could set off the mother of all flares,but my PCP, Rheumy and DS surgeon all agree again, that the benefits outweigh the risks. No more infections, which actually can and have set off flares,and I will actually be able to go without the blasted capri-length body shaper! That's why I'm trying to tone as much as I can, so the surgeon will have some nice muscle to re-drape things around.
I'm going to try to get to this board more often!
So.. did your weight loss help with your lupus...I'm assuming you have SLE and not some other type, correct?
HW 405/SW 397/CW 138/GW 160 Do the research! Check the stats!
The DS is *THE* solution to Severe Morbid Obesity!
Good to see you! Sounds like you and I have a lot in common. How are things going for you?
Just FYI -
My surgeon is no longer practicing as well. He actually did more high risk patients (super morbidly obese) and probably bypassed more than they would ever do today. His focus was on a patient never having weight regain - I have to eat like you do as well. You are not alone
If you are having problems with weight loss - there are digestive enzymes that your doctor can prescribe for you that help with absorption. I would try that before IV nutrition.
Also, I find that no-one understands my walk. I had a girlfriend who happened to have surgery and then was diagnosed with a number of auto-immune diseases. She apologized to me for not understanding- her attitude towards me prior to her diagnoses was to "suck it up" girl and get it together. Now she also suffers from pain and debilitating fatigue. She says now she understands. I now don't expect anyone to "get" it and do the best I can.
Good luck with your walk
Fellow lupie
B
Yes, there are doctors who will perform plastic surgery on a lupus patient. I chose the path of showing him how committed I was by sharing by diet and exercise program. I had a GREAT surgeon. He did a total lower body lift (Tummy Tuck + booty lift) and a hernia repair (complication of my WLS surgery). He did a wonderful job... I am estatic... I was able to drop down at least 4 pants sizes. I am excited every time I see a flat tummy and can fit comfortably into bikini underwear. Do your homework and ask questions up front - somethings we are reluctant to talk about. Tummy tucks can have an enormous effect on your sex life (I think for the better) - numbness may be a life long issue. Ask the questions. don't be afraid.
B
Don't forget to factor in the emotional aspects of this flare! I found that flares tend to be around times when I have a difficulty saying no. But then again, it can as simple as exposure to certain drugs or environmental conditions (eg. UV light fixtures). Hang in there - you can conquer this one too!
B
Hey Scout.... feeling for you!
I too, have lupus, fibro, raynauds, Sjorens, - you know it... the list gets longer
My advice to you - follow the medical advice and find something you can do well in bed. During one bad spell I crotched each of my friends an afghan. That way the time is productive and I had something to show for it.
Dont hold yourself accountable to standards that apply to healthy people. Your job now is to heal - your number one priority
Congratulations on hanging in there - this too shall pass
B
My, My, My. You have been through a lot. Congratulations on your survival and recovery!!!
After all you have been through - be patient with yourself. The puzzle of lupus is that it can affect any organ.
Did you mean you have lost 105 lbs or weigh 105 lbs? Rest, rest, rest.
B
Don't quit cold turkey.... make a plan
Helpful book -" coping with prednisone"
Try also to cut salt intake and usually prednisone gives me the "munchies" - you may be consuming more than you realize
Remember your body has a long memory, particularly if you have yo-yo dieted and it will fight to regain its old normal. When I first had surgery - I was on clear liquids and still my body would maintain weight for 3 wks - stubborn : )
You might also try a support place like WW to make sure you get a balanced nutritional intake - you can't live on protein shakes forever - a good time to learn skills you will need to know for a lifetime. When you start to lose again, Don't be surprised if the weight doesn't come off right away. Don't give up!
B
Hey PY - my best suggestion is know yourself.
I was diagnosed with lupus in 1999 after my son's birth - although I had been struggling with symptoms for years. I had weight loss sugery Nov 2004 - a radical version of RNY I knew that it would be difficult to revise my eating/lifestyle habits of 45 yrs, so I chose a surgery which virtually had a history of no weight regain but could have chronic malabsorption issues.
I have friends who have had RNY and virtually gained all their weight back!!!! I couldn't face that possibility. Choose one that you can live with for the rest of your life. My advice in terms of lupus - rest and exercise, exercise and rest. Choose a surgeon who listens, and who has a good track record --- talk to some of his patients who have had the surgery and ask about his after-care. Do his patients participate in a support group? (My surgeon made it mandatory)
All the best to you
B
on 2/11/13 3:37 am
In today's complex world of medicine and healthcare, certain medical terms, as well as medical "slang" and those handy medical abbreviations, often go misunderstood. Most of us are too embarrassed to say "what does that mean?"when something comes along that we don't understand, so in the medical world, we more often than not remain in the dark. With the premise that knowledge makes you a better person, let's take a look at one of those medical terms to gain a better understanding of its meaning.
Bariatric Surgery is simply a glorified name for "weight loss surgery." You may have heard the terms gastric bypass surgery, adjustable gastric band or lap band surgery, which are both forms of bariatric surgery. Let's look at the specific types of weight loss or bariatric surgery available and review the differences between them.
The two most common forms of bariatric surgery are the adjustable gastric band surgery and the Rouen Y gastric bypass surgery. They are both offer very effective weight reduction solutions but are actually very different from one another.
Adjustable Gastric Band surgery (AGB) or lap band surgery involves the the fastening of a medical device near the very top of the patient's stomach. Under normal cir****tances, the stomach in most of us is about the size of a football or roughly 6 liters in volume. After the band is secured to the stomach, it is inflated with saline solution, which constricts the band, closing the stomach and creating a much smaller pouch that will hold only about 1 ounce. This obviously greatly reduces the amount of food the patient is able to consume in one sitting. Over a relatively short period of time, the patient is then able to lose a great deal of weight simply by the high reduction of caloric intake. The fact is, most bariatric surgery patients will lose 75% of their weight within the first 12-14 months following surgery with the notion that they should reach their weightloss goal by the end of the 24th month.
Rouxen Y Surgery (RXY) or otherwise known as Gastric Bypass Surgery is considered a more involved procedure. In RXY surgery, the end of the esophagus is severed at the point in which it meets the stomach and a one-ounce pouch is formed at the end of the esophagus to take the place of the patient's stomach. Next, the small intestine is cut relatively close to where it joins the large intestine. That end is then brought up to the patient's one-ounce pouch, thereby bypassing the majority of the small intestine. This restructuring of the digestive system takes the form of a "Y" within the patient's body, which is why the "Y" is included in the name of the surgery.
The AGB surgery has traditionally been performed as a laparoscopic surgery. Recent advances in laparoscopic surgery technology and the development of new instrumentation have made RXY surgery less invasive and taxing on the patient. Many doctors have been doing both surgeries using laparoscopic techniques for quite some time, while others still prefer traditional surgery. I would certainly ask your surgeon about his preferred method before moving forward with weight loss surgery.
Both surgeries have advantages over the other in terms of making one procedure more appropriate than the other for any given individual. Lap band (AGB) involves no cutting of the stomach and typically takes about one hour to perform making it easier on the patient than gastric bypass surgery. However, gastric bypass surgery is known to offer better weightloss potential than the purely restrictive lap band procedure.
In either case, mal-absorption occurs making supplementation with bariatric vitamins and bariatric supplements extremely important going forward after surgery. In order to maintain optimum health, the bariatric patient should consider a multi-vitamin, B12, Iron and Calcium supplement. There are specific vitamins and supplements on the market for bariatric patients designed to work best with their new, re-engineered digestive systems.
As with most medical procedures, bariatric surgery carries risks of complications. Each patient should be aware of these risks before going through the procedure of choice. With lap band surgery, erosion of the band can occur with the consumption of alcohol and certain spices as well as certain types of medications. Also, slippage of the band is common if the person eats too much food. Surgery is then required to fix the band. Just as with any surgery, infection can occur during the lap band or gastric bypass procedure. Remember, following doctor's instructions before and after your surgery should certainly minimize the chance of any complications.
Daily Food Journal (or 'Confessions of a Rabbit')
A good friend of mine asked about protein-carb-fat breakdowns etc. for me on a daily basis, so here is what a day of raw food-ing looks like for me.This version of raw eating is very different than how I started out. Originally, I had a very light, lean and cleansing version of raw, only eating twice daily to minimize toll on the digestive system (and thus maximize energy!), but now that I've been raw for a while, and more importantly am nursing a fantastic baby girl, I am eating much more of a 'building' diet, as well as supplementing.
I haven't tracked my nutritional details in months ... so this will be a good test if my 'eating to appetite' and following my cravings is keeping me nutritionally balanced ...
Breakfast
16 oz. water (yay hydration!)
16 oz. of Amanda's Green Goddess Juice
*5 stalks of celery
*1 apple
*smidge of fresh ginger (very warming for February in Canada)
*1 lemon (peeled - as my juicer is a slow low friction juicer and coughs when it encounters tough matter)
*A few leaves of spinach, or dandelion greens or other green goodness
2 Bananas
5 Medjool Dates
Snack
8 oz. green smoothie (what Gwen didn't drink of her basic smoothie + some extra ingredients for Mama)
*couple small bunches of spinach
*1/2 cup frozen mango
*1 tsp. spirulina
Savoury Chia Crackers
Lunch (i.e. Uber-Salad)
1/3 head of Romaine lettuce
3 Tbsp hemp seeds
1 cup of fresh veggies
*red pepper
*tomato
*carrot
*celery
*mushroom
A sprinkle of sea vegetables
Braggs Liquid Aminos (tamari-type of sauce for a dressing)
1 tbsp. raisins
1 tbsp. nutritional yeast
Snack
Banana
2 Dates
Supper
Raw Tacos from Ani Phyo's 1st cookbook
*2 leaves of Romaine Lettuce
*1/4 cup raw soaked brazil nuts
*spices & salt
*cashew cheez
*red pepper corn salsa
Supplementation (tomorrow's post: Which supplements I take & why)
*Vitamin K2
*Vitamin B12
*Vitamin D2
*Omega3 with DHA + EPA
*Probiotic
The results ....
Calories: 2380 (a good number for a nursing mama)
Protein: 69.5 grams (way higher than I thought it would be since I don't try to eat protein)
Fat: 85 grams (this sounds high, but works out to 31% of my calories which is in line with conventional advice on fat intake)
And here is the nutritional breakdown (courtesy of mega-awesomeNutritionData.com)
I'm very pleasantly surprised. My Carb/Fat/Protein ratio is right where I like it to be - I have maximum energy with 60/30/10, and feel quite satiated on this ratio, especially while nursing. 80/10/10 is extremely cleansing, but I find 60/30/10 to be building which is what a nursing mama needs.
My vitamin and mineral profile is pretty good too. It would be better but many of my favourite superfoods are en route from Naramata BC (goji berries, raw cacao etc.) and thus I'm not getting as many vitamins and minerals right now as usual, as I'm out of some of these key staples.
The one element I'm getting 0% of (the Ch) ... is Cholesterol. I'm ok with that.
Amino acid profile looks pretty good too - could do with more Lysine - I've always had trouble with this one (it's Lysine-Tryptophan actually) which should be no surprise as this is common in meaty foods. I'm going to try adding a few more crimini mushrooms to Uber-Salad to help until my goji berries get here. And in the spring ... I'm going to raid my lawn for lambsquarters (good source of this amino), when I'm dandelion leaf scavenging as well.
What a great exercise - I'd recommend anyone do this once in awhile to check-in and see what their baseline nutrition is. You may be surprised at how many vitamins and minerals you don't need to be supplementing because you're getting them from a beautiful diet.
xoxoxox
hope this helps you
when having this surgery research is vital i researched 3 years before i committed to RXY gastric By pass best choice in my option!
love your life NOW
Dr. Pinky
check me out www.thepinkrabbithole.com
