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Update on me:) questions and a recent realization

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Posted 11/2/2009 9:25 PM (GMT -5)
My random thoughts....lol.

Well, I have been on 100mg amox 4 times per day since October 11. So far? Not really much to report. I am nauseas almost all of the time. Appetite was non-existent and now hits hard, but rarely. Dizzy, bad back and rib pain. My skin hurts! Very weird. Oh, and headache..almost constantly and nothing gets rid of it.

I have ordered Emu oil for my rib pain, but don't have it yet. I am trying ginger for my nausea but keep forgetting that I have it, so I don't know if it works or not. I haven't been doing detox baths or footsoaks which is really stupid because I know they work! But, I am just so super lazy and tired all of the time. I am out of money just from all of the vitamins/probiotics/herbs etc. that I have had to buy just between last month and this month. But, I am too sick to work! This is such a hard situation!

Some days I feel like I am getting my brain back, but then other days it is like I have early stages of dementia.

Does anyone know where/how I can get the spices for the detoxing cheap? I looked online at bulk ones, but they are like a high quality spice and more expensive. I'm not gonna eat it!lol.

And, I did have a realization yesterday. I have been beating myself up over the years when I have been too sick to work. Feeling like a complete and total failure, loser, waste, you name it. My parents are helping me now, otherwise I would be homeless. And, I feel TERRIBLE about this! I am too old for them to be supporting me! My realization is this: if I were married and too sick to work and my husband was supporting me, no one would think anything of it. It would be perfectly normal. But, since I am not married, I have to rely on my parents and this is shameful? I think not! I don't care what people think about it anymore! It still bothers me because I wish my parents didn't have to help me, but I am blessed that I have family who can and will help me. Everyone who wants to make fun of me for that or talk behind my back can kiss it!

Anyway, those are my ramblings for the day:) I don't have my sleep study results yet, but have started waking up not breathing again. It happens like 3 out of 7 nights and it is very scary. I take medication to help me sleep and I am afraid I will sleep right through an episode. So, they better freaking hurry up and get me oxygen!

Also, feeling kind of lonely. For the last year I have been totally anti-social. I was agoraphobic for a while, but my new meds are helping with that tremendously. But, it kinda sucks because I am craving interaction! All of the time! And the more I get, the more I want! I almost NEED to go back to work, but I just can't. I just don't know what to do!

Posted 11/2/2009 9:36 PM (GMT -5)
Hey alone,

I'm so sorry you're going through that. You said you were taking 100mg of amox 4 times a day. Did you mean 1000mg 4 times a day? 400mg a day is not enough.

This disease is hard to deal with and is VERY expensive even with insurance. I am married and we still struggle getting the things I need. My last bloodwork alone was $3000.00!! I'm sure I will have a nice bill to pay. And who cares if your parents are helping. We all need help sometimes. Feel blessed that you have parents that can help. Those people that are "talking" do not know anything about this disease. Don't worry about them. They are just ignorant!

What supplements are you trying to find?
Posted 11/2/2009 9:43 PM (GMT -5)
You are going to love the Emu Oil! Peppermint tea works for the nausea too! And it's cheap! I saw the cayenne pepper at Target for 7.99 and to me (single mom, laid off) that isn't cheap. I'm just going to do the detox baths with the Espom Salts & hy-peroxide. you can get those items at the dollar store or walmart!

I have always been super independant and hate asking for help. Actually I can count on one hand how many times I've asked for help. But this Lyme is making it really difficult to be independant! It's frustrating but it won't always be this way, right?

My friend has the same sleep issues. That would just terrify me!!!

I know all about the lonely thing. I have my kids, but during the day it's just me and the toddler and he can't talk yet. I just started blogging 2 days ago. You should try it! Although I'm not sure if anyone is reading it, it feels like I am typing a letter to an old friend, or someone that cares. LOL Not sure you are into that sort of thing but if you are we can be blog friends. LOL :) Where are you located anyway? if you don't mind me asking that is!
Posted 11/2/2009 9:49 PM (GMT -5)
Thanks girls!
CG...I did mean 1000. I'm sorry! I am just not used to typing that many zeros at the end of my milligrams:(
I am looking for the cayenne pepper, dry mustard, rosemary...and the other one, I can't remember:) in bulk. I haven't tried sam's club yet cause I just don't have the money right now. I do have some of all of them, but not much at all so I wanted to see if anyone knew where I could get a big supply for less.
Jenn..I am where the outlet mall is....know where I mean? If not, I will message you!lol. You can get some of the spices at the dollar tree...I got crushed red pepper..cause isn't that the same things as cayenne? i am honestly not sure, but it was a dollar so I bought it! $7.99 is waaaay too much! The grocery store I go to it is $5.99 and I think that is too much. I never have blogged...that does sound like a cool idea though. We could be blog buddies:) I don't know how to blog!lol.
Posted 11/2/2009 9:57 PM (GMT -5)
I am very sorry for your tribulations, Alone&Scared. I can't write much tonite, but please know that you are NOT alone and NOT the only one scared!
Posted 11/2/2009 10:05 PM (GMT -5)
Thank you! I hope you are feeling ok hun!
Posted 11/4/2009 1:05 AM (GMT -5)
An inexpensive place I've found online to purchase bulk herbs is Hanna's Herbs at hannasherbshop.com.

A&S, do you think you have sleep apnea? Is that why you got a sleep study done? Just recently I read, for the first time, sleep apnea on a list of Lyme symptoms. That was a surprise. Of all the things that are wrong with me, the apnea was one I thought was independent. If you do have sleep apnea and you have a lot of symptoms, starting on the right treatment will help you feel better. It made a huge difference for me. Before I started using a cpap machine I couldn't even drive anymore, my heartbeat was constantly irregular, my blood pressure was dangerously low, I would fall asleep at any time, I had chest pain and dizziness, and I couldn't think straight. Now those symptoms are gone. Also, I'm told that getting good sleep will help with the Lyme symptoms, too. I'm still working on the good sleep thing, but at least now my insomnia is not due to apnea and it is not nearly as bad as it used to be. I'm glad you got tested. Apnea is another health issue that is often overlooked by doctors and misunderstood by the public.

Rose
Posted 11/4/2009 3:57 PM (GMT -5)
Thank you Rose! yes, I do believe I have sleep apnea. When I was 19, my anxiety attacks started. I didn't know what was going on. I thought I was going to have a heart attack. I would wake up in the middle of the night not breathing and it was like the wind was knocked out of me. I would have to get up and start running down my hallway (stumbling and almost passing out the whole time) just to start breathing again! But, I didn't know there was any treatment for it, so I just never did anything. When I got on antidepressants this stopped. But, since then I have had a couple of reoccurences. The last 4 nights (not including last night..thank God!) I have been waking up not breathing. My Dad stayed overnight a couple of weeks ago and he slept on my couch, but he said I was snoring really loudly and it sounded like I was not breathing. So, that is why I asked for the test. I called today to see what the results were and they said "the doctor isn't in during the week and they have to review them"...I am confused by this because aren't doctors only in during the week? I dunno!
My rheumatologist also told me that not getting good sleep is now being linked with fibromyalgia and chronic fatigue, etc...he said when you don't sleep properly that the pain is worse. So, I am really hoping that I can find a way to get a good night sleep and get rid of some of this pain!
I am so glad that it helped you! It is overlooked..I have said things to my doctors in the past and they were just like 'oh you probably have sleep apnea,' and that was the end of it..Really? I had to specifically ask for one..crazy!
Posted 11/5/2009 12:31 AM (GMT -5)
I know what you mean. I even went to a cardiologist about the heart irregularity, and I mentioned that I thought I had apnea. He looked at me and then said it was unlikely and elected not to refer me to the sleep clinic. He preferred to tell me that people can develop an irregular heartbeat for no reason.

Loud snoring is a sign that you could have apnea, because the snoring is caused by an obstruction. I often had chest pain in the morning, a function of my body working hard to overcome the breathing difficulty. If you take medication for sinuses or congestion and you can do without them for a night, when you go back to the sleep clinic, don't take your meds. That's what I did the second night because I wanted to be sure I did nothing to impede the snoring. I wanted my test to be as accurate as possible.

This leads me to wonder - how come we have to ask for the test? I had to ask for the Lyme test also, even though I have since found out I had so many Lyme symptoms anyone with a medical degree should have been able to figure it out. Pretty dismal situaiton when you have to depend on yourself to figure out what medical tests your doctor should order.

I hope you let us know how your test comes out.

Rose

Rose
Posted 11/5/2009 11:12 PM (GMT -5)
Iwill most certainly let you know! (if I ever find out!Lol). I think I may  have still be using an inhaler and taking prednisone for bronchitis when I had the study, it may have interfered. I surely didn't sleep like I usually do, and I didn't have the normal headache when I woke up, so my results probably weren't accurate.

It is crap that we have to ask for these tests. Sleep apnea can kill you, but most doctors just don't care. It is all about not ordering tests and getting more money from our insurance companies. I was sick for at least 7 years before anyone ever tested me for lyme. I live in PA! Come on ppl! It isn't like it is rare in this area. Also, i know I have had mono before and my dr always told me that I didn't. FIrst thing my Lyme doctor said to me was, "well, you definitely have lyme and you have also had mono at some point." I knew it! Grrrr. We should be allowed to order our own tests....I think ppl would actually get proper treatment that way!

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