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I feel lost and scared...please answer...need advice! Any support groups?!?

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Posted 2/15/2013 6:37 PM (GMT 0)
Thanks so much for reading...I have to vent...

I'm not going to lie, I am sitting here crying as I stuff my face full of potato chips...I drank three glasses of wine last night and had a cigarette. The night before last I had a whole bag of Cheetos and 2 beers. Since I was diagnosed with Lyme - and other subinfections- last week and put back onto norco ( weened off of last year bc PCP did not be believe anything was actually wrong with me- which was a very hard process) and told I had to go on a strict gluton free diet and strong antibiotics (which I start Monday) that are going to make me extremely sick, I have wanted to do nothing but "get myself f*c*ed up." I am extremely upset that I am doing this. I know that I should be taking better care of myself and I feel guilty because I have a loving husband and two toddlers. However, I have this feeling of "I just don't give a crap" right now. I have spent every waking moment for the last 5 years fatigued and in severe pain, and I thought that finding out what was actually wrong, and that "it was not all in my head" would give me validation- but right now I am just plain pissed off. No one around me understands and since it's not something they can see or that is tangible, I think they are still leary that I am indeed sick.

Even after the diagnosis I know I have a very long road ahead of me to get better. I wish I had support because I desperately need it. I hope I can become strong enough to follow the diet and get it together. I have to, I know, but I am just so scared. I have never been on a glucose free diet, I have no idea where to even begin. I want my kids to have a mom who can take them to the park, the grocery store, the mall....

I feel so nauseous and yet all I want right now is a glass of wine and my bed. However, I have my two babies to take care of and it never seems to end...
Posted 2/15/2013 6:43 PM (GMT 0)
PS- I do know how to spell...lol. My computer thinks it is smarter than me and I also developed dyslexia...

On a side note- I used to conquer the world. I was very type A, and would accomplish anything I wanted. It's not that that desire is gone....I just cannot seem to reach it...if that makes any sense.
Posted 2/15/2013 7:19 PM (GMT 0)
Didn't you know, this IS the venting forum too tongue . As far as the diet goes I understand. I went to a nutritionist/herbalist that deals with lyme and she said not everyone has to go on such a strict diet. For me, also - it is probably most important to keep weight on so glucose/gluten/dairy free isn't really an option unless I want to be a cow full time and eat all day. But I still have modified my diet a LOT, gradually. No need to do it overnight. And honestly that has happened since October and I am now having no difficulties following it. I am still low glucose, low carb, no alcohol but I definitely don't eat junk food or even processed food. What region are you in?? I still eat chips but they are like weird quinoa chips with homemade salsa. Personally, for me, I want to get healthy fast. I'm impatient. So I don't want to put junk in my body.

You poor thing, goodness and two babies too!?! There are quite a few mommies on here I'm sure that will have some good advice for you as well. Perfectly OK for you to be sad and cry. And don't feel guilty. You live in PA -  Who knows maybe I will get better in like 3 weeks of starting treatment and I can come visit you LOL! I can take away your junk food and wine and give you water and healthy "junk" food and we can whine (instead of wine). The biggest thing is even if you feel like you are alone and NOBODY around you understands...everyone on this forum understands and knows what you are going through and that you aren't crazy. Its okay to be scared. I haven't even begun treatment and I'm terrified. This whole thing started for me because I had a reaction to cephalexin....which isn't even very effective for bartonella...so if it isn't even That effective...what the heck is it going to be like when I start the big boys antibiotics.... confused . I have now learned that my heart has been affected and my kidneys so.... POOP.

Posted 2/15/2013 7:28 PM (GMT 0)
Hi Momof2 again! Girl let it it out and cry! Have your last glass of wine (make it a good one) and start to slowly get your diet together. I can't wait to see the herbalist. My doctor is an integrative and a God send. Lord knows how many freaking doctors I saw before her.

But back to you...yes this is the place to vent, let it out, learn, laugh (yes we laugh on here) and let us know how you are feeling. Some of us are on here daily and I have to say how much I love this forum!

Praying for you for my dear and reach out if you have questions.

opugirl its so funny because right now I'm snacking on some tasty quinoa and black bean infused tortilla chips that are gluten free and WOW they are tasty!

Peace and blessings!
Posted 2/15/2013 7:30 PM (GMT 0)

Hi Momof2,

It's like reading my own reaction the first months after diagnosis.

It was like I was torn in 2. I had been looking for a cause for my extreme fatigue, huge list of very bizare symptoms, decreased intellectual capacities, my overall never ending pain for about 17 years. Now that I finally had a diagnosis, I was feeling sooooo bad, and sooooo freakin' angry!!!!

I got diagnosed in May or June 2012, and only started treatment in the first week of August. It was so bussy at work, and I was so worn out that I just couldn't dive into it. I had a three week holiday in July, and decided to just go on a holiday with my husband, charge the batteries and then get started. I think I was extremely angry for about 6 months, then it got slowly better.

I've been thinking, and I think it was some kind of mourning/grieving period - I lost more than half of my life to diseases, it felt like another slap in my face. It was horrible. There was finally the proof I wasn't crazy or imagining things, I was angry at all the past doctors, I was angry about the lost time, on the other hand I felt as if I really should be happy with a diagnosis, but I wasn't.

Just cry if you need to, don't be shy about that, you've got every right! It'll take take some weight of your shoulders.

Also: feel free to post here - it really helps!

It makes sense: wanting to achieve/accomplish things but never getting to it, getting dumber.

Hang in there! I've read plenty of stories here about people getting better - I try to keep that in mind.

And also: you love your kids and you husband, don't blame yourself, this is circumstancial, it's not your free choice!

Posted 2/15/2013 8:17 PM (GMT 0)
Hi there, I am two kids also, and have been through what you are talking about. With the gluten issue, I have it also, and have taken it out of my diet, at first it was a little difficult, lots of things I loved to eat has wheat in it. It just got to the point it was making me a lot sicker, my stomach would hurt so bad , I stopped eating it. The worst for me was taking out the sugar, I love sugar, and I love pop.

I try to think about the things I could eat, I am on the cave man diet, and I can eat lots of meat and veggies. Instead of Pop , I drink tea , and it's okay.

For meals, I make lots of chicken, beef , with fresh veggies, and drink lots of water. Since you have kids too, they will follow what you eat, my kids have started not wanting to eat anything processed, because they know it makes their mom sick, so they are eating very healthy now as well.

There is a huge gluten food market, it's expensive, but I have found if I buy the rice bread , and freeze it , it last me weeks, so it's not to bad. I can't afford only organic food, so I buy fresh vegetables, I cook with a lot of extra virgin olive oil instead of butter, and I use a lot of fresh garlic, and onion for flavor. I was always a pretty good cook, and I figure if I mess with the recipe enough it will taste good.

I don't drink at all anymore, and sugar had to go, becomes it helps feed the bugs. It will take time, it's not going to happen over night, but you will find your groove. As for the support system, some people can't handle Lyme, I have people in my family that will not talk about it, maybe they think if we don't discuss it , it will go away. I am living proof that is not the case. So hang in there, we cry a lot, and rant when we have to. Lyme is a serious disease, and the people that doubt our pain would only have to live in our bodies for one day to understand.

Give yourself some time, so many people are now gluten free, I gave up dairy as well, and that was hard for me, I love my hazelnut creamer, but it had to go, so I can get better. It's a long hard road, but we will get there, and so will you.

Justme
Posted 2/15/2013 10:46 PM (GMT 0)
Oh, yes you are in good company. I think we should all relocate to an island somewhere where we can have someone make all the good food that we can eat and where someone delivers all our meds to us and massages us and we can sit on the beach and look at the sea and then nap. I have 3 kids and a husband that cannot deal with this Lyme diagnosis. He thinks he is being supportive but I had the most horrific appt with my LLMD with my husband today because of my husband that left me crying ALL day- not what I needed at all, but it comes from his fear and grief over this disease but boy am I pissed.

And speaking of pissed- I am really pissed at having this really complex illness and it takes a long time to get over that and to get the diet thing right too. The quinoa chips sound really good- I think a visit to Whole Foods this weekend is in order! I am also on the cave woman diet and I do think it help- I know the gluten and sugar make me feel bad and they feed the bad bugs!

This is a great supportive forum for venting- I come here everyday for support and hope you will too! Yes, we cry, we laugh, we deal with our real life with Lyme right now but we will hopefully all heal one day soon! But drink your wine and eat your sugar and make your changes slowly and keep on coming to this forum!
Posted 2/15/2013 11:12 PM (GMT 0)
Hahah....thanks for your responses. Wow, I was definitely having a drama queen moment lol. I am also 33 and was bit in 2009. So, I have spent almost half my life dealing with this...

Anyhow, I used to be an avid gym-goer?!! Is that a word lol. Now that the docs told me I can't have things I want them bad. Tonight will be my last glass of wine! Well I am supposed to stop by Monday, so we shall see.

I definitely want to eat healthier. I have put on an extra 54 pounds in the past three years. I feel self conscious over it (but during that time I had two beautiful babies). However, with each pregnancy my symptoms got worse and I had such a hard time taking care of them and trying to get to the gym. In a weird way I am really looking forward to not drinking or eating junk food. I just need to come up with some simple recipes. I have no motivation to cook and my husband works A LOT!

I'm in Ohio, not PA....doc is 5 hours away :-(
Posted 2/15/2013 11:32 PM (GMT 0)
Shadow 69- yes, my husband is treading on water right now too...lol. He has not really said much since my official diagnosis but has told me, "You are always hurting and complaining, so how am I supposed to know when it's bad?" I think steam came out of my ears, but I do understand what he is saying bc I know that I complain during a flare up. Mind you, it's mostly bc I want help with our 1 and 3 year old children. He tends to want to sleep in on the mornings he is off and when he goes grocery shopping he gets potato chips and wine and all the crap I cannot have anymore. It just frustrates me bc he could just look at a piece of cheesecake and I would gain the weight. This has been a very trying time for our relationship. It's not bad enough that I had to go on a leave of absence from work, but I have the kids and he works 24 hour shifts....I feel isolated...that's what I meant by support lol. I get uncomfortable when I meet or talk with friends now bc of my neurological problems ( which prob frustrates me the most).
Posted 2/16/2013 2:57 AM (GMT 0)
Hello! I just responded to your other post :o). We really do have a lot in common :o)-fellow Ohioans, I'm 34, both have young children, former teachers. Hopefully we can help each other through this rough time.

I was giggling as I read some of your post because I too am a cheetos and potato chip junkie, LOL! That's what I miss the most about health/diet changes. I can do w/o sweets, but the salt and grease gets me every time.

My recommendation is NOT to go cold turkey w/ the gluten free and other diet changes. I tried that and failed miserably and then got really angry, but then went slower and have been much more successful. This is what worked for me:
(do these a couple of weeks apart, just take it slow)

-Start by adding in lots of veggies, as many as you can.

-Find other healthy foods that you can buy pre maid or that are easy to cook such as hummus w/ veggies, eggs, yogurt, almonds, guacamole w/ veggies, etc. Make sure you always have these to snack on so you don't reach for the chips.

-Eliminate anything that obviously contains gluten such as pasta and bread, then start looking at food ingredients for gluten (such as salad dressings, sauces, etc.). I like the taste of UDIs gluten free bread. It's the only gluten free bread that I think tastes okay. I always toast it and I don't eat a lot of it because it's expensive, but I use it as a treat for a sandwich or pizza w/ their pizza crusts. My local Kroger carries it; it's near the deli w/ the fresh breads.

-Then start eliminating sugars. Stevia is okay for us to have. Just make sure it's pure stevia w/o anything added, which I found in the organic section of my Kroger. I honestly haven't eliminated all sugar, but I just try not to take in too much. I did just eat a piece of v-day chocolate. I have to have treats now and then or just get POed that I can't have anything.

Some other tips:
-Look for slow cooker recipes. That's the easiest w/ kids. Then you can throw everything in in the morning and not have to try to cook w/ 2 toddlers w/ you. Soups, chili, chicken are easy to make in the slow cooker.

- Ask friends and family to prepare meals. Explain your diet restrictions and see if they can help. Also, ask for them to grocery shop. I'm unable to grocery shop a lot of the time and have had to rely on friends and family and my husband. I send my hubby w/ a detailed list and that cuts down on the random foods that he usually buys.

-Make smoothies-I use almond, hemp, or coconut milk (also in the organic section of Kroger), w/ kale, and frozen blueberries. It's simple and provides a lot of nutrients. It's good when I feel too sick to my stomach to eat anything and my kids LOVE the smoothies.

-Also, when you feel so sick and are laying down watching t.v., watch shows like Rachel Ray and The Chew. I've started doing that and get good meal ideas. I've never been much of a cook, but I'm using this time to learn.

You're right about the alcohol. If anything needs to go right away, that's it. We already have neurological problems and that just intensifies it. I occasionally get non-alcoholic wine just so I feel like I'm having a treat, especially if we're around friends that are drinking and I want to feel like I'm treating myself. Of course, it does have sugar, but it's ok in moderation.

I hope these tips help some! Just take it slow and remember that you are on your way to healing. I also think of the diet changes as a way to help my whole family be healthier. I try to get my kids to at least taste the foods I buy or make. I just got my daughter to try hummus and she loves it.
Posted 2/16/2013 10:14 AM (GMT 0)
Mystery Illness- yes, it seems we do have a lot in common! I laughed out loud when I read your comment about sending your husband with a detailed list...hahah. On Monday he "surprised" me while I was at the lab and went grocery shopping. I had a list and coupons clipped...everything...I was so mad...God Bless Him, he tries. My email is posted if you or anyone would like to email.

Thanks for your replies!
Posted 2/16/2013 4:13 PM (GMT 0)
I swear the first big fight we had in our marriage 15 years ago was in the grocery store!! over store brand vs. name brand AND we still fight about it. I can send him with a list etc. but with his ADD he will forget the list and come home with $100 worth of groceries and forget the 2 things I asked for and then tell me the store was out of it! It is maddening. Does your grocery store have delivery? I would do that if I had little kids again and couldn't go alone. I also do green drinks to get my greens in. I love veggies, but it is a lot of work. I use a juicer and i do half a cucumber, handful of kale, spinach, half a lemon, 1-2 apples, sometimes carrots and/or zucchini and I think it is really tasty. I also recently discovered Kind bars and Lara bars which are gluten and dairy free. Good luck you will get there!
Posted 2/16/2013 7:31 PM (GMT 0)
No delivery, I wish!!!! I am tempted to pay my kids babysitter, who is 19 and in college to go shopping for me hahahaha! I laid in bed one night when I couldn't sleep and thought about paying her to fold and put away my laundry, and grocery shop. I'm too type A personality though! Lol
Posted 2/17/2013 3:47 AM (GMT 0)
If your babysitter will do the shopping and laundry, pay her to do it!!!

I have always been very type A also. Lyme has taught me to let go and let it be. I also think of the song " Let it Be " by the Beatles whenever I'm having a hard time w/ my type A tendencies.

I have had many different people help me w/ my kids and household stuff over the past 18 months of this illness. Everyone does things differently, but I've learned to just realize that and still have them help me. Now, I did type out a list of the things that are helpful to me with instructions of how we do our laundry, LOL, but I released control. Help with the laundry has been HUGE for me. The lifting, carrying, etc. is hard on me physically and it's just so constant with a family of 4. I have my babysitter that comes part-time do most of our laundry. She puts the kids stuff away and leaves my hubby's laundry and mine in a basket in our room. It's a huge help!
Posted 2/17/2013 4:58 AM (GMT 0)
Momof2withlyme,

There has been a lot of good advice given here. I would also like to make some comments.

You have good reason to be angry and upset. Don't feel guilty about venting. We are used to that here. Just be aware that once treatment starts that you want to keep as positive and optimistic as possible. You are going to need all of the positive energy that you can muster.

I know that you feel overwhelmed right now, and that is normal. Most of us were in your shoes when we first entered into this new dimension that you just stepped into. Everything pertaining to treatment, supplements, detox, diet, finances, and lifestyle changes are new and overwhelming in scope. I remember those days clearly. My family survived all of that and so have many others. You and your family will triumph over this as well!

Our head Moderator (Traveler) often gives out some great advice that I now give as well- START OUT SLOWLY. Mystery Illness said the same thing regarding diet changes. There is no need to feel totally overwhelmed. Frankly, I believe that if you try to make too many changes at once, that it would be a shock to your system, and that can't be good.

Please try to not feel victimized. You are not a victim. You are in control. Make changes as you are comfortable in doing so. I would start out by introducing a modest level of detoxing, and only add to it as you are comfortable. As far as the Antibiotics are concerned- your doctor is a realist. However, i would negotiate with him/her as to the schedule in starting them. I can tell you that if you are put on high levels of 3 Antibiotics at the same time, that it may be VERY rough! Maybe it would be better to Start with 1, then start with the 2nd two weeks later, then start with the 3rd two weeks later after that. I would encourage some of the other members to pipe in here with strategies that worked for them.

Another suggestion is that you and your husband should be mentally prepared ahead of time for is the level of stress that will arise once you start treatment. The other variable to be addressed is time. Time tends to wear you down. Your husband is the one that will need the extra prepping at this point. He will have to consciously make the decision to exercise infinite patience and toleration towards you and the circumstances. I know this from personal experience. Please show him what I just said.

Please do not feel overwhelmed at all. Start out sensibly and moderately in all things. You can make adjustments as you go along. Believe me, you will make a lot of adjustments as you gain competence in understanding your situation, and what works and what doesn't.

That is all I am going to say, as you have already been given some great advice. We are here to hold your hand during the days ahead!

Don
Posted 2/17/2013 5:42 AM (GMT 0)
im just like you, but my doctor wont diagnose me or seriously treat me, so at least your getting meds!!! I have to go in and fight with my doc on wednesday to try to get him to give me more.

im 34 and have twin 2.5 year olds and a 5.5 year old... and i have to care for them 6 days a week caues my hubby has to work 7 days a week and we are broke...

its an emotional and physical roller coaster thru hell, these diseases. i cried all day the other day. then i was scared, then i was raging mad at the doctors...
its truely a fight for your life
Posted 2/17/2013 10:40 PM (GMT 0)
Hi Lyme mom,
I am new to this site, and ave mostly been reading. I felt compelled to post to you. I know you are in a bad place right now but hopefully one day you will be looking back and able to help other cope through this awful disease. I know it is overwhelming...only do what you can do. Baby steps. I mostly wanted to tell you after reading your Cheetos comments this: I have been searching for tolerable Gluten free foods for my son. I have found a line called simply natural by frito lay for Cheetos, ruffles and Lays. I have been buying the Tostitos, which taste great and also the sea salted potato chips by lays. 3.99 a bag at stop and shop. Also Bell & Evans breaded chicken tenders gluten free taste normal, got at my local health food store and Trader Joes crispy chocolate chip cookies...MMmmm. Just some of the things. Have found...it's trial and error. Hang in there, you are not alone!
Posted 2/17/2013 10:52 PM (GMT 0)
Hi Momof2withlyme
I have three babies and was just diagnosed with Lyme and have been so angry, scared, sad...you name it. I feel i will never get better and no one believes lyme is what is causing my symptoms that I am just crazy and that I am hurting my children because I am so sick.
I have no joint problems just neurological and such so it's even harder because everyone thinks I am fine when I am struggling to get through a day or an hour.
I would love to hear some success stories and stories of length of treatment before normalacy was in sight :)
Posted 2/18/2013 2:26 AM (GMT 0)
kdrose, you will get better. It's a rolercoaster ride and is a long, slow process, but you'll heal from this. Just take 1 day at a time, sometimes 1 minute of hour at a time! I'm 6 months into abx. treatment for LD and Bartonella and I'm seeing improvement.
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