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Have to get it out

post #1 of 18
Thread Starter 

I am worse than struggling. I am 10w1d. This technically means I have only been recieving HCG in high enough doses to test for 6-7 weeks. I have lost 11 lbs. I cannot do anything. By ANYTHING (I don't think anyone understands this) I mean I don't DO dishes, I DO NOT cook, I don't clean, I barely get out of bed. I'm always freezing but if I stand for to long I feel overheated and need to pass out (or lay down). It has been extremely hard to get anyone in "authority" to understand my needs. I STILL have not met "my" OB (I hate this office, not staying) but have talked to other MW/ob in the office. The last one (a mw) asked me if I was anorexic. i had just said not 5 minutes ago that i MISS DONUTS. that doesn't compute to me. I had said I just did not want to eat, I can't eat, IT HURTS. She then tells me that I should eat every 2 hours and even if i don't want to to just say the mantra in my head "this isn't for me it's for my baby". I was flabberghasted. I wasn't even mad until I thought about it more but what does not compute about IT HURTS TO EAT. PAIN from eating is a huge deterrent and shouldn't be ignored! Like I can just stop having food hurt me by saying that. I was also told that I am most likely not going to get any help. There isn't anyone who is going to want to repair the diastasis recti or the umbilical hernia since it will all get stretched again but it's SO OPEN and my "swayback" pushes everything out even further, I'm SURE that this is a partial cause/effect of continued intestional distress. I tested negative for celiac but am unlikely to get the gastro to schedule any kind of "oscopy" to see if I have chron's or some other PROBLEM going on. It's like they all think it will be better for me to be on vicoden for the severe pain (of which the intestional has NOT BEEN DIAGNOSED) of my back and guts ALL THE TIME instead of running the damn tests. Really going #2 10x a day doesn't seem to be a problem FOR THEM. I really hate "health care". STUPID. If I had any energy I would bash in their windows I am so upset.

 

I am researching into more homeopathics and came across a very strict chron's/ibd/autistic diet (inclination to bash my head is scaring me) that I started even though I don't have enough information or food to keep it going. It's so very restrictive that I will have to cook everything from scratch on my own though. I have so little energy this is hugely daunting. Also b/c it cuts out the carbs of almost all foods it's going to be very hard to gain any weight until i can make some of the safe cake/bread and slather it with honeybutter (my only source of real weightgain i suspect) but i don't have some of the ingredients AND i am only able to use nut flours which can also still be hard to digest. Mostly though broth is going to be a new staple for me, it has made me feel better but i'm out and need to make it from scratch to get all the good stuff. At least I know how to do that! Just have to go shopping. Which I have now relegated myself to using the electric wheelchair carts b/c I can't shop, think, and walk. I wish i had a wheelchair for my house (but the house wouldn't be accessible with it anyways).

 

I don't get how I even got pg. This isn't anything new, just the slight change of pg hormones (my first 2 pg were a BREEZE) and my fear of the vicoden that has pushed me into having to do something.

 

I'll end on the positive note that I went to my first ever acupuncture appt last thursday and LOVED it. I am going 2x a week for the rest of the year (we think i have 12 visits a year and it starts over in jan so we'll use them up). I also ordered a big homeopathy batch of meds ($150). Cell salts to use instead of prenatals (since i can't/shouldn't take them) plus some remedies I had been given before that I am low on and will try to use more often to get better. So far the babys heartbeat has been great.

post #2 of 18
Wow, that sounds aweful! I think that most of the medical community has their heads up their butts when it comes to good nutrition. Most people don't realize it until they try to find an answer. I don't have time to write much, but I know other mamas on this group can chime in. We also follow a "restricted" diet, and while it is hard, it shouldn't take long for your energy to increase. Your body will thank u and once you learn what works it will get much easier. Big hugs, and hang in there...it will get easier.
post #3 of 18

I'm so sorry you're struggling. My issues are a bit different, but suffering from HG, I know how difficult it is to find people to understand and support you - luckily, my provider is amazing. I really encourage you to keep squawking unti you get the care you deserve.

 

Hang in there...I hope you feel better soon.

post #4 of 18

I don't really "belong" here, because I'm due in April, but I saw your post on new threads, and had to respond.

 

I felt like that for the longest time. I don't have many of the same issues that you do, but a few of them (mainly the intestinal stuff) I have had pain when eating for as long as I can remember, but never a diagnosis. And for the last couple of weeks/a month, I've had to use the electric wheelchairs, too. I'm really sorry you are going through this. I hope you can find things that make you more comfortable, and find a practice/provider that you feel comfortable with that will listen to you. I've never been a big fan of doctors, really, either.

 

I'm glad your acupuncture went well. I've heard that can be *very* helpful sometime.

 

*sneaks back to April DDC*

post #5 of 18
hug.gif That's quite a load of intensity you're dealing with there crazyeight. We were doing a pretty restricted diet like the one you mention for about six months or so as well (working on food allergies/intolerance). Yes, it's pretty difficult to keep up with. Do you have a crockpot? Trying to always have a pot of broth going for making soups, or whatever, has been really beneficial for us. I've weaned us off a lot of aspects of the diet with the possibility of picking things back up at some point, but yes, I needed a break from all the work and the kids needed a break from the social restrictions as well. Is it just you on the diet?

Glad baby is doing well! And joy.gif for accupuncture. I've been meaning to pick up some cell salts but keep getting sidetracked eyesroll.gif . Hang in there! I know how hard it is to find really good, quality medical care where your providers actually listen to you.
post #6 of 18

My friend has crohn's and is I think 30 weeks pregnant, she has that intestinal pain from eating and it got bad enough she was in a hospital for week recently and she had to get IV nutrition hooked up to go home. She is now on IV nutrition, raw milk and broth I think. From your description you could have crohn's or some other intestinal thing for sure. I'd find another doctor if you can. The one you have sounds really stupid. And yeah, sadly stupid doctors are becoming more common.

 

I'm sorry you are going through this and I hope you find some relief soon. hug2.gif

post #7 of 18
Thread Starter 

i have "self diagnosed" at least as IBD, but chron's is even more fitting for the intense pain. when i have some mental clarity i know what i NEED to do but i am to the point of being unable to do it myself. i don't know if the GI is going to slough me off instead of trying to find a diagnosis and am wondering if i will be able to get a feeding tube although an iv would be better to completely bypass the absorbtion and digestion problems. i FINALLY got the results from my thyroid and hemoglobin tests from 10/24. hgb is already down to 11.2 (12 is the minimum) and that was weeks ago. no idea how low it is now but i could stop by the wic office when i go to town and ask them to do a quick test and weight (which i don't need for my knowledge but to shore up my med records).

i have a crockpot (not sure where though and will take immense energy to find :( but when i can get to the store i will be making lots of broth. it is the only food that feels good but doesn't stick with me. i have had to stop myself from slapping people when they say "I'm starving" like uh no...you have NO IDEA what that's like. i would love to go to the hospital for a week.....seriously want a bed, tv and my computer and an iv sounds like heaven.
 

post #8 of 18

IV nutrition was hard for my friend to get. She's been in the hospital about 3 or 4 times this pregnancy because of the intense intestinal pain. She might need surgery on her intestines after the baby is born. And IV nutrition can't provide ALL of your nutrients, only about 60% so, you still have to take something by mouth, I guess liquid nutrition stuff. I would try to get a colonoscopy if you haven't. 

post #9 of 18
Thread Starter 

yes i'm the only one on the diet. bf didn't believe me when i said i can't eat beans and the ONE BEAN i ate from a bite of his food made me throw up (and i completely stopped digesting anything i ate after that but before i threw up). it's an immidiate cause/effect now. even safe foods make me feel gross until a few very slow well chewed bites. my kids are picky brats so they aren't going to touch 99% of what i make (except eggs) until i start some baking with sweet stuff and i pretend it's just my "gluten free food" not veggies hidden in everything. bf is good with fresh veggies and is more a raw and/or vegitarian when is alone but doesn't get the rest of what i'm talking about.

post #10 of 18
Is there anyone around you that you can hire for a couple of days a week on the cheap to help you out a little? Maybe a teenager looking to earn a few extra dollars?
post #11 of 18

hug.gif  A couple friends of mine have crohns and it sounds very much like what you are describing.  Both had issues with finding a doc who would take their complaints seriously, and we are near Boston, which is a huge medical hub.  Both really had to take matters into their own hands.  Both do the Simple Carbohydrate Diet, and both had absolutely tremendous results.  Do everything to find that crockpot, and start making some broths.  Once you make that choice, and your body starts to be able to do its job, you will start to feel better really quickly.  If I remember correctly, some of your kids are old enough to be able to help you out some, even if you need to supervise? Or maybe BF, or some other family or friend could step in and take over some responsibility? I wouldn't worry about what BF thinks, or if your kids are picky, do what you need to do to get better, that is the biggest priority.  Your kids need you to be better, even if they complain a bit about the food.  Sometimes people don't take these things seriously until we break down and ask (or demand) some help.  As you cut out things that make you sick, and replace them with things that you can tolerate (things that you feel okay eating, not things that the particular diet says are okay at this point), then you should start craving things that your body needs. And keep in mind that vitamins and supplements many times are loaded with fillers and stabilizers, which can be wheat derived (I am making an assumption that you are cutting out wheat...if you aren't, you probably should).

 

I have no "diagnosed" condition, just a laundry list of stuff that is irksome, and my son has a lot of random issues as well.  We generally eat grain free, corn (and many of the derivatives) free, dairy free, and soy free (which basically ends up being very similar to the GAPS diet which is based on SCD).   It is HARD to change your mindset, but that's what you have to do.  For me it was like quitting smoking (yes, I was a smoker before DS came along duh.gif), and cutting the foods gave me withdrawals.  I really had to choose to be healthy.  But, as I said before, the better you eat, the better you feel, and the less the lifestyle feels like a chore. 

 

Anyway, please ask someone for help, and don't be afraid to change your diet, it will work wonders.  Worry about the diagnosis later. 

post #12 of 18

I agree 100% with babysmurf!!

 

With DC #4 I was so so very sick.  I had stomach pain every other day from eating foods that most people think are ok.  I went to the ER with violent vomiting and such severe pain I was almost hallucinating.  I went to the ER about 8 times in this condition until I finally realized they weren't going to help me :(.  This was 7 years ago and on a military base (don't even get me started on them).  They would test all my vital organs, white blood cell count, ultrasound of baby and tell me everything was fine and they just didn't understand why I was behaving the way I was :( and according to all their tests I was FINE.  At one point they even  tested me for drugs (because clearly I was lying about the pain and the insane vomiting MUST be from drugs.  The only thing that would help me was morphine and phenergan but they already thought I had a drug problem so why would they give me the ONLY thing that gave me any relief :(  So sad. 

 

A friend finally mentioned that gluten could cause these in some people I took matters into my own hands.  I did lots of soul searching, and internet searching, and finally eliminated it  (I do realize that yours is more than gluten though).  It took a long time, and I made a lot of mistakes, but finally cleared it out of my system completely.  It took a long time before I started to feel better but gradually I did and the slip up became less and less.  Finally after baby girl came I demanded they test me for Celiac disease, they did, it was positive.  I was told I would need to see a GI doc for a biopsy and would need to add gluten back to my diet for 3 FULL months in order to get an accurate result.  I told them to go F themselves and I didn't need their d@mn biopsy to confirm anything, I was feeling better and that's all that mattered to me.  I haven't had gluten intentionally in almost 7 years and life does NOT suck any more.

 

Hang in there mama, do what's best for you and advocate for yourself.  You have to DEMAND what you need instead of asking, tell them you'll report them if they don't do the test and someone else's proves this problem is real.  I've had to do this.  I told a Dr once that I wasn't leaving until they helped me and I sat in the waiting room and sobbed until the office manager came out to get me and offered help LOL

 

I hope you gets some answers mama!!

 

post #13 of 18

I am not sure this applies or would be appropriate for you, but wonder if juicing or smoothies would be helpful for you? I know juice was all I could consume the first few weeks, and is what I go to when I feel I cannot get anything down.

 

Regardless, I can only imagine how hard this must be. Please keep us posted.

post #14 of 18

Is there a gluten free nutritionally dense 'shake' you could drink, like spirutein?  Or have you tried this already? 
 

post #15 of 18
Quote:
Originally Posted by JNajla View Post

Is there a gluten free nutritionally dense 'shake' you could drink, like spirutein?  Or have you tried this already? 
 


I have not tried this.  I'm actually in a good place with my diet now, my story is 7 years old :) I just remember how bad it sucked and how sucky the Docs were when they ignored me.  Actually, today was really rough and the only thing I could get down was a smoothie ... it stayed and I'm feeling a bit better.

 

Do you drink these, or is there something else in them that makes you sick as well?  I remember the pain like it was yesterday and know how bad it sucks :( I would starve myself before I caused the pain intentionally!

post #16 of 18
Thread Starter 

I am feeling a little bit better. The scd is definitely a piece of the right puzzle. I am actually also wondering if it could be candida overgrowth although i do NOT have any yeast, rash or skin problems. They overlap in some area's but contradict in others which is very difficult for me right now but I am going to get a blood test (they've done so many already that are just routine!) and when I was in the hospital and possibly another lab there seemed to be an infection going on which is what leaky gut would point to as well. Leaky gut could be chron's/celiac/ibd AND candida though but at least that meshes up.

I went to MFM yesterday and it was a much better experience. I have been on scd for a little under a week (all safe foods, not stage 1 or intro b/c i need to eat) but I showed up with a heart rate of 140! They waited for the GI to send over their results of my celiac and IBD (both negative) results and I was at the office for 2 hours, they gave me a room where I could lay down and a blanket. I saw the first woman I was scheduled to see but she left and consulted with another dr. I am being referred to internal medicine and also setting up the GI appt again with instructions that procedures are allowed.

I am still very weak and tired but not being on the vicoden and not having to have 20 BM's a day is a small improvement. I am hoping to go and buy a smaller crockpot b/c I think mine (large) one is burried in a huge box that I cannot lift still in my RV.

I'm worried about next week though. The kids are out of school and my step son will be here so there's 4 kids with NOTHING TO DO and the house won't clean itself (i keep begging)

 

I have looked at protein drinks off and on, it's hard to figure out between scd diet and candida diet which foods ARE ok and which are going to lead to pain or overgrowth and the additives in most (or hemp seed or other food I can't have) make it extremely difficult to pick one that tastes good enough to buy and is acceptable to the gut so I've given up on an "easy" thing to do. Smoothies are somewhat ok. I can't have a lot though as the raw fruits (and seeds) are bad for chron's and the sugars are bad for candida, green smoothies are acceptable though and I'll probably have one later with spinach. I hope it doesn't hurt.

 

Another weird thing (which is candida indicitive) is that I am much worse in the mornings (morning sickness LMAO) from 3 a.m. until about 3p.m. and then FINALLY i get HUNGRY, like the real me. I feel alive and Ok although still very slow and painful I feel better. Either this is due to not eating the right foods in the morning (the past 2 days is banana, egg "pancake") or is just a symptom of having to gear up for the day/get past "morning sickness".

 

Mentally I'm a little better, it goes back and forth every day though and I am anxious b/c of these problems all the time. There's a list of "SHOULD DO-ITS!" in my head but my anxiety of the pain and tiredness and just getting something done that helps more than it takes away (calorie/energy wise) is hard to figure out. I just feel better when I lay in bed and don't move except to sit up and eat or go to the bathroom i don't like moving at all.

 

When I was at MFM yesterday though they asked me if I was commited to keeping the pg. They are concerned that I will decline inevitably to death although I may not be close to that now, it at least was enough for her to mention which, oddly, makes me feel like they are better equipped to help me, b/c it does feel like dieing! To have your nutrition just flush right out of you and to watch the lbs fall off plus the extreme weakness, it's scary on top of difficult. I hate feeling this way and not even being able to know that those around me understand that this is simultaneously ABOUT ME (to get well) but also I have not been well in so long that being pg is the only reason people are jumping, the decline is faster whereas it wasn't even monitored before and would less likely to get help b/c I wasn't "in danger" enough. Rock meet hard place. Hello my life. :/

post #17 of 18

IME any one of those things are going to cause enough inflammation in your body to exhibit overlapping symptoms.  Luckily, the theories on how to treat are very similar and are based on traditional or even "paleo" themes.  The fact that there is so much overlap (besides being logical, IMO) makes me think that there is definitely something to these diets/lifestyles. Anyway, i really hope that you can start to make up some broths/soups, those will be the easiest things for your body to digest.  And make sure that you are trying to get down plenty of fat.  If you are worries about yeast, I would be cautious with coconut oil, as that can cause die off and make you even more miserable (that was the case for me).  I would stick to clarified butter, butter, or olive oil.  I drizzile it over everything. (It will help your body absorb the fat soluble vitamins) I would also be careful about overdoing the green smoothies, it takes a lot of work for your body to convert the phyto nutrients into a form that you are able to absorb.  For now, animal products and well cooked veggies are going to be easiest for your body to use.  The less stress you put on your body to get nutrients, the better right now.  Also keep in mind that these issues are passed on in families, so I would try to pay attention to your kids...I think you mentioned that they are crazy about baked sweets, and that sent a red flag up for me in terms of being yeasty.  It's super duper hard to make changes all at once, but I would try phasing out the sweets.  Start using honey to sweeten at first and then slowly reduce the amounts that you use.  It will also help you if you only need to make one big stew rather than separate meals for everyone because they are "picky". 

 

Is your DP into grilling or braising meats? One of the things we try to do is cook up a bunch of meat on the weekends, then I use the gravy or make a broth, and use the meats to make stews for the week.  I think for a family your size you would have to cook two huge hunks of meat at the same time, so that you are able to have left overs.  Having the meat already cooked makes my job easier on those nights I just need a break. 

 

Hugs!

post #18 of 18

Perhaps this will encourage you a bit.

 

My sister was incorrectly diagnosed with chron's and celiac and found that the only thing that helped was a strict candida diet. After 6 years of struggling with humiliating monthly accidents, violent pains after eating, an inability to gain weight, she's finally able to live a normal life. The first month of the Candida diet was miserable for her, (during the candida die-off period) but now she is thriving. There are some stats floating around on candida websites that claim that something like 70% of Americans have some level of candida imbalance, I can't vouch for how valid that statement is but it seems to be a growing issue. I myself find that I feel remarkably better when I stick to a Clean Candida eating plan. It may not be what helps you, but I though it might be worth knowing that it helped some others. 

 

I hurt for you when I imagine you feeling the same helpless pain my sister was in. I hope that you're able to find some relief and comfort soon. 

 

Sending good thoughts your way.

 

Crystal Marie

“above all things have intense and unfailing love for one another, for love covers a multitude of sins ” 1 peter 4:8
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