Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newly Diagnosed..

i too am getting the same from everyone in my family to get on ssi, but i am unsure what to do as well, i am 32. i had to quit my job because of all the pain and dr visits. everyone tells me here that you have to fight for ssi for years, i just dont think thats right if you have this much pain then have to go through a fight to get ssi. i hope you are doing ok with your diagnoses. when they first said as to me i know i had a strange look on my face i had never heard of it before then they throw this big word at you, lol. and your going huh? lol. well any way i hope all goes well for you. we all just have to keep doing the best we can right! Deah

I guess fortunately my dad did not have to fight for his SSI he got it on the first try. The hardest part for them was him having to be off work for the 6 months before they could get it.

Are there a lot of people on SSI on KickAS? I know some are from out of the USA but I was just trying to decide how often people are not able to work with AS...

hello again, just wanted to respond, i have not been working for 5 months or so now, the reason being i was working in a factory where there was so much lifting and bending my body could not take it, i got to the point i could not even get out of bed in the mornings let alone keep up with house work, ect. i still push my self to the limits, lol .they had me on so many meds it was also hard to be at work. for example they put me on a strong dose of flexiral, i could not even stay awake let alone work. along with predisone methotroxate, indosine, and others all at the same time, seems like they didnt help a whole lot either, but anyways it just got to the point something had to give so i stay home, and babysitting a little now, but without ssi or something it is hard. i went off all meds a few months ago, because they told me all the ones i was on could make you bleed to death internally. so i have not even seen a dr since then and it is bad. i told my family i would deal with the di, without meds, but seems like that is not a good idea either, lol.

Hello Deah

I'm 32 like you, and I really can't figure myself not working at all. With the AS we have many pains, but there are ways to control them. Also we can find large periods when the disease rests a little, and the pains are "softer". You need to learn how to control the flares.
Medication is important specially during this flares.
I take NSAIDS occasionaly, but lesser and lesser since I started the no starch diet. It's worth a try. I was very skeptic at first, it took me months of reading thins. And finnaly I realized: well I have a stamp on my forehead saying "incurable", what do I have to loose? If I can live on without daily meds that may ruin my kidnes or liver, that would be great.

Besides, not working means staying at home more time. That can drive people mad, specially women. Going off to work makes you feel alive, talk to people, realize that are other persons with problems, and that they still fight and push their life forward.

I must be kind of masochist, but when I feel like giving up (we have to accept that this happens sometimes, and there is nothing we can do to stop it), it makes feel better watchig some TV shows of people who suffer from disasters or with diseases far worse than AS. As long as they don't concern kids. This makes me cry.

Rest for a while and thing of some of the working possibilites you may have. Maybe a part-time job? This would allow you to rest more, and also find time to do exercise, like swimming. I do it daily and it is a gift a found in my life.

All the best of luck for you

Zélia

Still working on the motivation for the NSD/LSD as well as the exercise. I have had a hard week this week though. My Grandma died on Tuesday. The funeral is tomorrow. It has been rough. To much to deal with much else. My life is a mess lately! Hopefully I will be back on track soon... I have to get my house clean first lol. This site has really been great lately though. I find myself going to check posts like every hour hehehe... I think I am addicted! Just have to start posting more, I just dont know to many people yet... I am a little shy so hope fully in the next few weeks I will make many new friends as so many have given such great words of encouragement already! Thanks you all!

Sara, don't stress about little things like the house. You've been dealt some great blows lately, with your Dx and grandma dying-those are tough ones.

Take one step at a time. And one bite too. You want to go LSD, pass on a slice of bread, or something else. Maybe just one thing per day. Don't worry about an extensive exercise program just now, work into it-maybe a walk around the block, or 2 or 3 leg lifts while still in bed-grow into your changes. Your house is messy? You should see mine-well, er, not!!! I'm happy if dishes are washed, laundry gets done, groceries bought, you get the picture. The floors get swept when my back says it's OK to sweep and so on and so forth.

Have a good cry when you need one. If you feel you need a hug, give a hug-you always get one in return.

Thank you for the kind words. I am trying to take it all one step at a time. Which can be hard because I am a do it all at once kind of person. i have no patience! lol I have though cut out the bread and pizza from my diet and it is working wonderfully. Should find out this weekend if i am pregnant or not and if not I can go back on meds agian... but hopefully I am You all have been so great. I hope to learn as much as possible and maybe I can be the one with the encouraging words for the next newbie!

Hi Sara..
Just wanted to say welcome! Sorry I hadnt responded..sick kiddos so it's been a long 2 weeks of sleep deprivation.

I think everyone covered about all the bases and wanted to offer my experience as well. First of all dont let all this AS business overwhelm you. It may seem that way but knowledge is power when it comes to fighting this disease.

I had my almost 12 yr old pre_AS days ...my 5 1/2 yr old was when I first got sick...serious stomach issues related to AS but I didnt know at the time..went full blown about 8weeks post partum. I did have symptoms since I was about 6-7 yrs old with my knees and back pain since I was about 16 yrs old..I am now 37. I would have terrible spasms & be out of work for weeks at a time. Didnt think anything of it since the docs thought they were pulled muscles at the time. Lucky for me I had a sharp Orthopedic doc who shipped me to a Rheumy after my 2nd child was born and was tested for the HLA b27 and AnA test..and xrays showed the AS monster was around. I had my son after I was full blown. He was a surprise pregnancy and risky since I had back surgery a year before. I had all 3 of my kiddos by c-section. The only one that was due to As was my 3rd child and that was because I had inflammation in my pelvis from the AS monster so it would be too risky to try for a natural. The other 2 were just big and refused to want to leave my tummy.

This place helped me so much and I would recommend you check out the NSD/LSD forum. Following a low starch diet helped control my colitis problems and some of my flares. Exercise is key and I think thats the only thing that has kept me sane and my body from being completely wriggled up although it's hard at times.

The new biologics have showed some promise for many members here and hope you find the right combination of modifications to help you fight the AS monster...
take care!

You should carefully consult your health care professionals to help guide your diet during pregnancy -in your case during your anticipated pregnancy. You should work together with professional advice to make sure you are obtaining adequate and appropriate nutrition during pregnancy.

Here are souces, some less technical and some more technical, that provide information or cautions on dietary interventions which result in restriction of carbohydrate during pregnancy:


NON-TECHNICAL SOURCES OF INFORMATION ON CARBOHYDRATE NEEDS IN PREGNANCY

http://www.centerforwomenshealth.com/pregnancy.htm
…Pregnancy is one of the most nutritionally demanding periods of a woman's life. Gestation involves rapid cell division and organ development. An adequate supply of nutrients is essential to support this tremendous fetal growth. While caloric needs increase only 15 percent (300 cal/day) the requirements for some nutrients doubles during pregnancy. Pregnant women need to choose nutrient dense foods to assure adequate nutritional intake…

Complex Carbohydrates:
A pregnant woman's calories should come from all three energy sources: proteins, fats, and complex carbohydrates. If you restrict your carbohydrate intake during pregnancy you can put the fetus at risk. Without carbohydrates your body will burn proteins and fat for fuel. Two things happen physiologically with this: 1. There may not be enough protein available for the developing brain and nervous system of your baby, and 2. Burning fats can release ketones (an acid by product of fat metabolism) that can be destructive to fetal brain cells and the delicate acid-base balance of the fetal system. Low carbohydrate diets can be dangerous in pregnancy.

http://www.mdadvice.com/library/urpreg/wbw7.htm
Carbohydrates
There is no recommended dietary allowance (RDA) for carbohydrate intake during pregnancy. Calories from carbohydrates should make up about 60% of the total number of calories in your diet. Adequate carbohydrate intake can help avoid formation of ketones, which accumulate in the blood when carbohydrate intake is low. High levels of ketones may be harmful to the growing baby.

http://www.bidmc.harvard.edu/display.asp?leaf_id=2394
"Carbohydrates
Carbohydrate - The Major Player in Your Diet
“ Approximately half of the calories in your diet should come from carbohydrates. There is no specific number of grams of carbohydrate recommended because the amount of carbohydrate in the diet depends on caloric needs, which are highly variable. This recommendation may come as a surprise to you, as many think of pregnancy as a time when protein should constitute the majority of the diet…

Do Not Restrict Carbohydrates During Pregnancy
Restricting carbohydrates can be very dangerous, especially during pregnancy… When your body breaks down carbohydrates, glucose (sugar) is released. Your baby needs glucose to develop a health nervous system. If you do not take in enough carbohydrates, your body will, instead, begin to break down its fat reserves to nourish your baby. When fats are broken down, ketones (not glucose) are released. There is some evidence that these ketones may be harmful to the baby's developing nervous system. …”

http://www.emedicine.com/med/topic3234.htm
Prenatal Nutrition
Authored by Dominic Marchiano, MD, Fellow, Department of Obstetrics and Gynecology, Division of Maternal Fetal Medicine, University of Pennsylvania
Coauthored by Serdar H Ural, MD, Assistant Professor, Department of Obstetrics and Gynecology, Division of Maternal Fetal Medicine, University of Pennsylvania

"The demands of pregnancy necessitate additional dietary requirements. Obviously, additional energy (caloric) intake is required to support recommended weight gain. Because energy requirements in pregnancy are increased by 17% over the nonpregnant state, a woman of normal weight should consume an additional 126 kJ/d (300 kcal/d); however, this energy should be of high nutrient density. Nutrient density reflects the amount of protein, vitamins, and minerals per 418 kJ (100 kcal) of food.

Protein should comprise 20% of a normal pregnancy diet. The recommended daily allowance (RDA) in pregnancy is 60 g. Fortunately, most American diets already contain more than enough protein. Pregnant women should be aware that many animal sources of protein are very high in fat and might contribute to excessive weight gain; therefore, animal proteins should be taken sparingly. Fat should only comprise 30% of a normal pregnancy diet. Carbohydrates should comprise the remaining 50%. "

RESEARCH ON CARBOHYDRATE RESTRICTION/DEPRIVATION IN ANIMAL MODELS

http://www.ncbi.nlm.nih.gov:80/entrez/qu...3&dopt=Abstract
Kubow S, Koski KG.
Maternal dietary glucose-lipid interactions modulate embryological development in vivo and in embryo culture.
Biol Reprod. 1995 Jan;52(1):145-55.
PMID: 7711173; UI: 95226562
“We suggest that a carbohydrate-free maternal diet with apparently adequate levels of essential fatty acid can contribute to embryonic growth retardation both in vivo and in vitro by perturbing embryonic essential fatty acid metabolism.”

http://www.ncbi.nlm.nih.gov:80/entrez/qu...9&dopt=Abstract
Taylor SA, Shrader RE, Koski KG, Zeman FJ.
Maternal and embryonic response to a "carbohydrate-free" diet fed to rats.
J Nutr. 1983 Feb;113(2):253-67.
PMID: 6822899; UI: 83111210
“…whereas the remaining embryos succumbed to embryolethal conditions more directly related to the metabolic consequences of carbohydrate deprivation.”

http://www.ncbi.nlm.nih.gov:80/entrez/qu...3&dopt=Abstract
Koski KG, Hill FW.
Effect of low carbohydrate diets during pregnancy on parturition and postnatal survival of the newborn rat pup.
J Nutr. 1986 Oct;116(10):1938-48.
PMID: 3772523; UI: 87035911
“…The data demonstrate that maternal dietary carbohydrate is required for fetal growth, normal parturition and postnatal survival of rat pups. The results indicate that late gestation, parturition and the neonatal period may be especially vulnerable to maternal carbohydrate deprivation.”

http://www.ncbi.nlm.nih.gov:80/entrez/qu...0&dopt=Abstract
Romsos DR, Palmer HJ, Muiruri KL, Bennink MR.
Influence of a low carbohydrate diet on performance of pregnant and lactating dogs.
J Nutr. 1981 Apr;111(4):678-89.
PMID: 7218040; UI: 81169930
“…but fewer pups from bitches fed diet 2[carbohydrate free] were alive at birth (63%) than from bitches fed diet 1 [control diet with carbohydrate] (96%). Only 35% of the pups whelped by bitches fed diet 2 were alive at 3 days of age…. We concluded that pregnant bitches require dietary carbohydrate for optimal reproductive performance.”


HUMAN STUDIES: LONG-TERM OUTCOMES ANALYSIS ON ADULTS WHOSE MOTHERS WERE ADVISED TO INCREASE ANIMAL PROTEIN AND DECREASE CARBOHYDRATES AS A DIETARY INTERVENTION DURING PREGNANCY:

http://www.ncbi.nlm.nih.gov/entrez/query...t_uids=11751704
Shiell AW, Campbell-Brown M, Haselden S, Robinson S, Godfrey KM, Barker DJ.
High-meat, low-carbohydrate diet in pregnancy: relation to adult blood pressure in the offspring.
Hypertension. 2001 Dec 1;38(6):1282-8.
PMID: 11751704
"To examine the hypothesis that a high-animal protein, low-carbohydrate diet in pregnancy is associated with raised blood pressure in the adult offspring, we performed a follow-up study of 626 men and women in Motherwell, Scotland, whose mothers' food intake had been recorded during pregnancy. The mothers had taken part in a dietary intervention in which they were advised to eat 1 lb (0.45 kg) of red meat per day and to avoid carbohydrate-rich foods during pregnancy. The offspring were followed up at age 27 to 30 years, and their systolic and diastolic blood pressures were measured. Women who reported greater consumption of meat and fish in the second half of pregnancy had offspring with higher systolic blood pressure in adult life (regression coefficient, 0.19 mm Hg per portion per week; 95% confidence interval, 0.04 to 0.35; P=0.02). High maternal consumption of fish, but not meat, was associated with higher diastolic blood pressure in the offspring (regression coefficient, 1.00 mm Hg per portion per week; 95% confidence interval, 0.18 to 1.82; P=0.02). These associations were independent of maternal blood pressure, body size, and smoking habits during pregnancy. Although we cannot exclude confounding by maternal saturated fat or salt intake, the findings support those of a study in Aberdeen showing higher blood pressure in men and women whose mothers had eaten a high-animal protein, low-carbohydrate diet in late pregnancy. These associations may reflect the metabolic stress imposed on the mother by an unbalanced diet in which high intakes of essential amino acids are not accompanied by the nutrients required to utilize them. "

http://www.ncbi.nlm.nih.gov/entrez/query...t_uids=10901561
Shiell AW, Campbell DM, Hall MH, Barker DJ.
Diet in late pregnancy and glucose-insulin metabolism of the offspring 40 years later.
BJOG. 2000 Jul;107(7):890-5.
PMID: 10901561
“…CONCLUSION: High intakes of protein and fat during pregnancy may impair development of the fetal pancreatic beta cells and lead to insulin deficiency in the offspring…”

http://www.ncbi.nlm.nih.gov/entrez/query...t_uids=12915635
Herrick K, Phillips DI, Haselden S, Shiell AW, Campbell-Brown M, Godfrey KM.
Maternal consumption of a high-meat, low-carbohydrate diet in late pregnancy: relation to adult cortisol concentrations in the offspring.
J Clin Endocrinol Metab. 2003 Aug;88(8):3554-60.
PMID: 12915635
"...The specific advice given to mothers in this study precludes direct application to other populations, but the findings provide the first human evidence that an unbalanced maternal diet during late pregnancy may program lifelong hypercortisolemia in the offspring."

WOW that is crazy. I am rethinking even cutting out bread at this point now! I will definately talk to my OBGYN about it when I get pregnant! I am thinking that if I am not pregnant this month ( I will find out this month ) I am going to make a pre pregnancy apointment with the OBGYN to find out about what I should do about the AS and preparing to be pregnant. You know we decided to start trying two weeks before my AS diagonosis, and this whole AS has made it so [**BLEEP**] complicated! UGH! It is really getting depressing, I just hope that I get pregnant soon so that I have something wonderful to look forward to. I really need something right now...