It is just shy of one year since the last time I posted here. Nothing has changed. Actually yes it has changed. It's worse now. I could have written the same post today. That is very sad to me. I have an appointment with my primary care doctor tomorrow afternoon to get test results. I'm also waiting on test results from my second ACTH test. I had this one done up in Denver. To date no one has yet taken the time to look at the big picture or patterns and trends of my labs and symptoms. It's very frustrating. I'm extremely irritated today. Everything David does makes me mad. He just told me to call the community office tomorrow and tell them that they can't h-*ave anyone play with a ball out in the playground anymore. Um, we chose to live right next to the pool and the playground so we have to put up with balls thrown and kicked into the side of the house sometimes. I'm not going to call and tell them no one can play ball on the playground. If he wants to he can but I'm not going to do that.

I'm having some strange, new symptoms today. Since mid April I've been stumbling. I'm afraid people will think I'm drunk in public. In the beginning of May I hit my head one night but have no memory of how I did it. I had a lump and bruise on my forehead the next morning. I've been having trouble for a few weeks with telling right from left especially when I look in the mirror. I know what side something is on but am convinced it's on the other side. This morning I woke up and didn't know what day or time it was. I had to ask David and still didn't believe it when he told me. I looked at my phone and didn't believe it either. I'm having a lot of trouble typing on the laptop today. I'm making lots of mistakes. It's irritating and annoying. I thought about going to the ER but don't want to deal with David. I could go myself so he could stay home with Bayou but I just don't feel like doing it today. I'll see the doctor tomorrow and see what he says.

I feel like I have so much going on that I don't know what to focus on or what to mention to the doctor. He at least seemed interested last time I saw him in helping me figure out what is going on. I don't know if I actually believe him or not. No one besides Shellie has really cared enough to look at the big picture. They don't have time, it's too complicated and it spans years. So who has time for that. I don't even have time for that. I've been spending all my time putting the puzzle pieces together but no one seems interested in looking at what I've put together. I've seen 3 specialists in the last month and all 3 have told me to come back in 2 months. What am I supposed to do in the mean time? Get sicker than I already am? I don't think that after 2 1/2 years I am going to magically get better by waiting for 2 months.

The new ideas they have are:

• too many steroids (oral, inhaled, sprays and injections and maybe topical) causing adrenal suppression or insufficiency
• it's all due to my state of obesity
• endocrine problems that don't seem to show up on tests
• HIV
• Lyme Disease
• an unknown illness/syndrome/condition

I don't know what to make of any of it. 

I'm cutting back on meds because:

• I'm taking too many (14!)
• I'm still not feeling good
• there are way too many interactions
• there are way too many side effects
• they are not solving the problems

In 17 hours I will see the doctor and I don't know exactly what to do. What's important? What's not? I don't know.

I try to pare it all down but it's almost impossible to do that with being sick for over 2 years.

I feel like I can't believe in tests because flagged tests mean nothing and tests come back normal when there is obviously something wrong. If I can't find someone who can help me I don't know what I will do. It's not like I can ignore this and just go on with my life. It's there every day whether I pay attention to it or not. I am beyond frustrated.

I don't want to have something wrong there just is something wrong.

Tired of it all today

I'm feeling really down today. Even if the doctor figures out what's wrong with me (hormones, adrenals, Lyme, thyroid, blah, blah, blah) the treatment for all of them seems so complicated. The more I read on facebook groups the less I want to know what's wrong. So many people feel worse by treating their illness. At least now I know I'm going to feel crappy. Why take hormone replacement or supplements or whatever and have it wreak havoc with my system? It doesn't seem worth the risk. I see Shellie in 9 days and I'm not even sure now that I want to ask her to run anymore tests. The only one I think I will do, because it's an at home test, is the A1AT deficiency test since I have a genetic marker for that one. I don't think I'm A1AT deficient but I'd like to know that for sure. I don't think that getting tested for Lyme Disease 25 years after I had been treated for it makes any sense even though a doctor recommended it. Adrenal fatigue isn't an illness even though a lot of people treat for it. There's no real way to test for adrenal fatigue. The tests they do are for adrenal disease, which I apparently don't have at this point. It's all so frustrating to me. I know I am fatigued, in pain, can't tolerate cold, am losing my hair and have trouble breathing but there's no labs that tell me why. I am B12 and Vitamin D deficient but I don't know if that accounts for what is going on with me. I guess I could talk to Shellie about that. I'm just feeling like it's all pointless today. Shellie isn't going to be able to do anything for me and I don't want to spend a ton of money on stuff that insurance won't cover (like supplements or BHRT). I can't afford it anyway. Frustrated and dejected.

I got all the fruits and veggies at Sprouts and haven't juiced any yet. I have eaten a few pieces of fruit but not enough to make a difference. I just feel like it's pointless. I lost 15 pounds in 2 weeks juicing and gained it all back when I stopped juicing. I don't think I could do a 60 juice fast like Joe Cross did. In fact, I know I couldn't, mostly because David wouldn't be able to because of his diabetes. Doing it alone would be too difficult. I don't know what to do. I'm sick of getting tests done only to have the results come back negative. I don't want to have anything wrong with me but something is causing these symptoms. There are so many people out there with the same symptoms and everyone thinks it's something different causing it (adrenals, thyroid, pituitary, hormones, Lyme Disease, etc.). How is a person supposed to figure it out especially when there aren't any specific tests for all of these syndromes? Sometimes, like today, I think that if I just stopped thinking about it and got on with my life I'd be fine but I feel bad whether I want to or not. Just not thinking about it doesn't change it. This pity party I'm having today isn't helping me either. Nothing helps.

So where do I go from here? I could ask Shellie what she would do if she were me but I'm afraid to hear her answer. I think that mostly she is just humouring me. I mean, I don't think she's running the tests for no reason, she knows I'm not feeling good but really, a year into it and I still don't know much of anything. Nowhere is where I go from here. At least for today. I'm still waiting on test results but don't think they will show much beyond the vitamin deficiencies. I'm not taking any supplements for them right now because I want the test results before I treat for anything. I was hoping Shellie would have called me by now but I may just have to wait until I see her on the 9th. I'm getting tired of waiting for test results and doctor's appointments. I'm just sick of it today.

Shopping for fruits and veggies is fun!

I got up early this morning and went to Sprouts to load myself up with fruits, veggies and nuts. I felt better just doing that. I'm not hungry though so I haven't really eaten anything today besides some walnuts. Tomorrow I will start juicing again. I also was able to get to the pet store to get food for Bayou. Great accomplishments considering how bad I feel.

I had my phone conference with Dr. Nancy Mullan this morning. She spent about 25 minutes with me. She suggested some testing and finding a doctor who can help me. I'd hate to not see Shellie but I do need someone who can actually do something besides order tests. One of the tests Dr. Mullan suggested was a Lyme Disease test by IGeneX labs. I contacted them today and they are sending me a kit in the mail tomorrow. I was treated for Lyme Disease about 25 years ago. I was on an antibiotic for a while but then never really followed up on it. I hope Shellie will humor me and have blood drawn for the test. If she doesn't I don't know what I will do. Dr. Mullan also said I should get a serum Lithium test done. I'll ask Shellie about that and the FT3, RT3 and TgAB thyroid tests. I've already been looking for doctors who treat alternatively. I found a couple here in town who both take my insurance. I need someone like Shellie who will work with me but can then know what to do to treat me. I'm just kind of tired of the whole thing today. I don't want to give up because I have to feel better but I'm just too exhausted to keep up this mental pace.

At least I got to the store today.

Still ill

I'm eating poorly, I'm not sleeping well and I'm tired and sore. I've been doing a lot of research and lab results organizing which isn't really helping me right now. I'm still waiting on test results from the 18th. It could be another week before I hear anything so I have to be patient. But I don't want to be patient. I want answers now. I'm not doing myself any favors by the way I'm eating so I've gained back all the weight I lost. I need to get back to juicing and a plant based diet but I'm so fatigued that  thinking of doing that exhausts me even more. I'm going to do it though, whether I like it or not. It's what is best for me. Not eating or eating just junk isn't good. In fact, it's terrible. I can feel the poisons I'm putting in my body. I need to get good fruits and veggies and nuts and seeds in my body again. Tonight I feel bloated and sick to my stomach. That's what I get for going off the food plan I was on. I'm not drinking any water either and that never helps. I'm very dehydrated. I can feel it in my feet of all places. They are cramping up. I'd like to go to the store tomorrow but may not make it until Friday. I have to get a shower, which right now exhausts me, and I have a 15 phone conference with a doctor in California at 10:30am. I've been getting up later because I feel bad again and it's going to be hot tomorrow so going out later in the morning won't work. I may just have to do it though because Bayou needs dog food. She'll be out by afternoon time tomorrow. And it's almost 1am and I just took my meds about a half hour ago so I won't be sleepy for probably another half hour. I'm just really treating myself poorly right now. I feel like I shouldn't ask anyone for help because I'm not willing to help myself. I have to be willing to make changes first. No one can do anything for me if I'm not going to jump in first. I'm getting more depressed with each passing day. And I know it's all due to the poor eating habits I'm back into. I better try to go to bed. I'm just depressing myself even more. Goodnight.

Overwhelmed with information

I've been doing a lot of reading about genetics, B12 deficiency, Paleo diet and test results. I'm trying to educate myself for my next appointment with Shellie. I watched a one and a half hour video today about the MTHFR gene and what happens when it doesn't work correctly. It was fascinating! I learned a lot even though there were some things I did not understand at all. I tried to focus on the B12 stuff this time around and what the protocol is for dealing with the issues I'm dealing with. One of the things that really stuck out for me was that I have to get protein in my diet. I'm going to check into the Paleo diet more and see if it is something that I could sustain. My eating hasn't been great the last couple of days because I'm not all that hungry. In fact, I don't think I've had anything at all to eat yet today and it's almost 2:30pm. That's not good. I have to get back on track with my eating as soon as possible. It's hard though because I am so tired and have absolutely no energy. It's hard to stand for very long. I think I will make myself a turkey and cheese bagel though just so I have something. I'm running low on a lot of things but don't have the energy to go to the store today. I'll try to go in the morning. I guess a banana would be good to eat too. Just something to get some food in my stomach. I'm not strong enough right now to make a juice. It takes too much energy to get all the fruits and veggies ready and then stand there and juice it all. Even though it only takes about 10 minutes total I just can't do it today. That's how bad I'm feeling. I'm anxious to get my test results back from Shellie. I want to know what my B12 and D3 are doing along with the hormones she is testing. I won't be surprised if it all comes back normal though. I made a complimentary 15 minute appointment with a doctor in California. I don't know what she can tell me in 15 minutes but I'm happy to talk to her. Her consult fee is really high so I don't know if I would follow up with her at this time (I'll have to save up for whomever I consult with) but I'm grateful that she gives out so much information and is willing to talk to me for 15 minutes. I'd like to see a genetics doctor through my insurance but I don't know that they would be of much help. I'll talk to Shellie about it and see what she thinks. I can always do my own consult with someone on the phone if a genetics doctor isn't in the cards. I'll just have to put money aside until I can afford it. It will have to be done eventually. But first I think I need to change my diet and wait on test results before I do anything. The video I watched cautioned everyone to not just start dumping supplements into your body all at once. There are steps to be taken first and then adding the supplements one at a time every three days. There is a lot to digest but I'm doing my best to understand and take it all in.

The cleaning lady is here right now so I'll wait until she leaves to get something to eat. I'm feeling kind of hungry right now which is good. I'll start with a banana and work my way up to a sandwich if I can. I have to do what is easy at this point because I'm so low on energy. I know if I eat better I will feel better but the paradox is that I don't have the get up and go to do anything. Mornings are better for me and since I only slept about 2 hours last night I'm even more tired than usual. I'll have to make a point of going to bed by 10pm tonight and not staying up all night doing research. I also put a binder together of all my lab results, genetic testing and symptoms. It's all in one place now. It will be easier to deal with that way. I can take it with me to my appointments if I need to but probably won't have a great need to do that this next time. I'll just bring the page that has my questions on it. Being organized is my thing and just knowing that I have that binder makes me feel better.

There are about 6 fires burning in Colorado right now and the smoke from some of them is reaching us in Colorado Springs. It's been hazy and smells like a campfire outside. It's irritating my throat and eyes. These fires will be burning for days or longer so there's not much relief in sight unless the wind blows in a different direction. I'm using the inhaler Shellie gave me but I'm not sure if it's helping or hurting. I'm going to ask on the STTM board if it is hurting me to use it. I don't think it's helping with the air hunger yet but I guess I won't know if I don't use it consistently. I won't use it though if people on the board say it can be harmful to someone in my situation.

Bayou has been in her kennel for almost 3 hours now. She's being so good today. I can't wait to let her out once the cleaning lady is done. I'm grateful to have someone clean the house though because there is no way I could do it. Just doing the dishes and laundry is plenty for me. And I have to be up by 8:30am tomorrow because the guy is coming to mow the lawn at 9am. David was thinking of going up to Denver with Gabe tomorrow but I don't think he'll end up doing that. I'd prefer that he stay home. He wouldn't have to leave until about 11am but I'd like him to be home with me tomorrow. I miss him when he is at work. I get lonely sometimes. Lynn didn't answer her phone so I haven't really had anyone to talk to and I have so much going on that I want to talk about. I'm sure she'll call me later when she gets up. I think she was up all night too.

That's it for now. The cleaning lady is almost done. David will be home soon too. He was going to look at some golf clubs after work (he got off at 1:30pm today because he went in very early). The pace will pick up a bit once Sharon is done and David gets home. It's not that I have to do a lot it just gets busy once Bayou is out of her kennel and wants to go in and out. Plus I need to do something for dinner. I'll probably just heat up leftovers for David and make a sandwich for myself. Okay, this is really it for now. LOL

Saw the PA today

I was nervous going in to see the PA today because I was so prepared (spreadsheet, requested tests, questions, etc.) but I should have known better. Shellie has been so cooperative and easy to work with in the past that I knew I could count on her. She appreciated my spreadsheet and me being so detailed. We went over all the tests I had written down and we discussed the ones I've already had and wouldn't need to repeat at this time. She did agree on redoing the B12 and Vitamin D test though since I have consistently been low on both and it's been 3 months since my last tests. She also agreed to look at the female hormones. We haven't tested those before and so she thought that would be appropriate. She also has a doctor in mind if I do have any issues. We talked about my 'air hunger' issue and she decided to give me an inhaler for 3-4 weeks to see if it helps. I've been wheezing once in awhile and she's hopeful it will help with that too. I got my blood drawn for the labs today and should have the results back within 2 weeks. I have an appointment to go back in 3 weeks to follow up on how effective the inhaler is with the 'air hunger' issue. Overall I feel the appointment went really well. Oh, and she also encouraged me to get Methyl B12 instead of using the tablets. I really felt like she listened to me and that she wants to help me figure out what is causing my fatigue, intolerance to cold, hair loss, lack of appetite, air hunger, etc. I don't want to get my hopes up too much that we'll find answers but I have to admit that I am feeling hopeful. If nothing else we can rule out some other issues.

I'm still very tired today. Just going to my doctor's appointment wore me out. I didn't get anything done around the house and certainly didn't get any grocery shopping done. I'm going to try to go to the grocery store tomorrow morning before it gets too hot or it rains. We're out of a lot of stuff so I have to go to the store. I made the sorbet last night without a banana and it was terrible. The banana gives it the right taste and consistency. Definitely have to get some bananas. I'll probably have to go to Sprout's and Target because I need some paper goods at Target and I need to get the Methyl B12 at Sprouts. Hopefully I can do both. Sprout's will be the priority though. Paper goods can wait until Thursday if I can't do both. If I get out there early enough I think I can do it.

I haven't juiced for 2 days now because standing at the counter is difficult. I'll try to get back to it tomorrow after I go to the store. I'll need a nutritious, refreshing juice once I get home.

So, it was an encouraging day even though I'm still feeling fatigued. That's it for now.

Feeling ill again

The last few days, even though I've been trying to eat well, I have been feeling sick again. I am fatigued, lethargic, cold, anxious, feel like I'm gasping for air at times and sleeping a lot more. I have trouble getting to sleep at night sometimes. Other nights I fight through sleepiness to get to bed without falling down. I feel off balance too. I do see the PA tomorrow morning so that's good timing. Oh and my appetite is waning again. I've put my significant labs in a spreadsheet for her to look at (I know, I'm such a geek and have too much time on my hands). I'm going to discuss some additional testing with her. I don't know which of the tests she will want to do, if any. I trust her judgement and will go along with whatever she wants to do (or not do). I'm tired of thinking of all this stuff and don't think they'll find anything through routine testing anyway. I never know when I'm going to feel this bad so it's very difficult to plan anything. Just walking around the house tires me out and hurts. My legs are sore again but not as bad as they were just a few days ago. I'm anxious to see Shellie tomorrow and see if she is just as stumped as Dr. Koren or if she would be willing to do some more testing. I'm not due for another CT scan until August to check on the benign growth on my adrenal gland. I want to keep an eye on it though since it did grow a small amount from December to February. Something is causing me to feel this way and I wish I could figure out what it is but testing is not really leading me anywhere at this point.

I did do some genetic testing on my own through 23andMe. I haven't decided yet if I will pursue researching it or not. It's very complicated and I'm not sure if it would help anyway. I think I'm just tired overall of looking through test results and trying to learn what it all means. I do know that I'm sick and tired of being sick and tired. My B12 and D are consistently low for the past year at least. I'm sure that has something to do with how I'm feeling. I've been reading about B12 supplements and think there may be something more effective to take than B12 tablets. They haven't helped at all. There is a supplement called Methylcobalamin B12 (methylated B12) that are sublingual lozenges. They might be more helpful but I want to check with Shellie before I make any changes. I think the D3 I'm taking is okay though. I'll have to ask on the adrenal board I'm a part of to check on that for sure though. From the small amount that I could understand of the genetic testing it looks like B12 and D problems are an issue for me but I don't understand the testing well enough to know for sure.

I did ask about getting consults for the genetic testing and just to get additional info is $50. A consult with a doctor is $250 (which I can't afford). I don't think insurance will pay for that but I'm not sure. I'll have to check into that too. I may do the $50 consult though so I can get some more understanding and learn how to research my results.