If she's back I should be too!

I guess if a revival is in the works I should help. 😀

Life has been challenging but good. I'm working with behaviorally challenged foster kids as a caregiver. I'm very blessed that my health has improved enough for me to work. Things have been a bit challenging financially for a while. Husband never got the job we were expecting so things got very tight. Add the debt from all my medical bills when we lived in Nevada and we got stuck in a rock and a hard place. We actually had to file bankruptcy purely because of the medical bills. We so need health care reform that deals with the outrageous costs involved. Through all that I learned that more than half of the bankruptcy cases filed are due to medical bills. It's mind boggling.

One positive has been that all my food storage and other preps have come in very handy. We've not starved and we've been able to pay bills. I have been considering school for my BS but unfortunately aid goes off your 2014 taxes which was a much higher income. Together we make less than half of Husband's former income. Ick. Luckily cost of living is very low here. Since I can't get aid I'm looking at a bookkeeping course. I had to open a gofundme for it and wow is that humbling. I spent so long raising funds for other families that being on the other side is a huge eye opener.

On the prep front we are hoping to get a garden planted this year to help with food and food storage costs. We have plenty of space for it and with Husbad working locally we have more time to do it. Cross your fingers.

All in all life is good. Kids are fantastic. Monkey is now 7 and she is in 1st grade. She reads at a 5th grade level and does math at a 3rd grade level. Bug is 14 and ending her 8th grade year. I'm way to young for a highschooler. Ack! Our home is beautiful and we are together. Makes it a pretty good life.

Getting discouraged.

I started a new fun business venture. One that lets me fulfil a dream while being within my ability due to my health. I have thrown myself into it. Honestly not earning much yet because I want to make sure I start off exactly as I am. That has meant making sure that my customer base knows I am in it for more than money. I am truly in it for them. My director nominated me for a pretty great training program and I was thrilled to get in. It is all about becoming a director myself and building my business. However my lovely constant companion means I do things very different than most. I do my whole life different. Chores get spread through the week. Cleaning my floor is an all day multi step process. My differences may get me booted from the program and I have to say that kind of hurts. To know that yet again this junky disease might mess something up sucks. I truly wish it would leave me something.

Am I joining a new club?

Might be! My FMS has been pretty interesting lately. I finally gave in and went to the pain clinic. Was put on an med regimen that seems to help in the pain sphere. A side effect has been loosing more weight. I am down to 148 at last doc visit. One not so fun thing has been a complete lack of appetite. I have never been a large eater but now I actually have to remind myself to eat or I can go the whole day without a bite and not notice. It has however made me notice more when I am having sensitivities to food. My most recent flare began after eating my favorite meal. Chicken fried steak, mashed potatoes, and brown gravy. Within hours I was in the bathroom with stomach cramps that were excruciating. I proceeded to be sick through the night. I was so weak and sick through the next day that I stayed on the couch all day. Then the next day I woke with a horror of a migraine. I think our presidential candidates tried to have a boxing match in my skull and caused my brain to swell. It was awful. I luckily already had an appointment at my clinic scheduled. I am loving them. I was very against going due to my past history with drugs and the horror stories but they are a whole body wellness kind of place. I have done physical therapy there and message therapy. Been great. Anyway my doc had some big concerns. Due to my sensitive stomach she suspects Celiac's or at least some significant food allergy issues. Hence the new club. So I need to find a good GI and get checked out. She also wants me to find a new primary doc. They handle a lot of my needs but some needs need a PCP and mine just hasn't done some things I guess she should be. My hematologist who monitors the lymphocyte issue said as much when I saw him in April but to have another of my team make the same recommend must mean its true. She feels I need more blood monitoring due to being a chronic illness patient. She also thinks I need someone who does more than write a prescription. Which I agree with. I guess I just figured she was doing what she was supposed to be doing. So wish me luck. I am trying to take my health in hand but the road is a long one, longer than I ever dreamed. I had really hoped that a diagnosis would mean fix but at this point I will take what I can get. Much love to all!

Hot potato Lila!

Do you remember as a child playing the game called hot potato? You and your friends sat in a circle and passed a ball as quickly as you could without dropping it. If you let it drop you lost. Now imagine that game and every person in the circle is a doctor. A Hematologist, Primary Care Dr., Rheumatologist, Endocrinologist. They pass that potato so fast it blurs. I realized today I am that potato. FMS makes me that untouchable unwanted potato. Every doc runs a battery of tests just to rule out things so they can prove something else. Finally I thought I had hope. I found a well respected Rhemuatologist. FMS is after all in that category. Went in and she tried some meds and ran her slew of tests. Her meds made me sicker. Her tests agreed with everyone else. I am the healthiest sick person in the world. Today I was told that the nature of FMS makes it difficult for her to help me so she is passing me on to a pain management specialist. I get to add another doc to the circle. I am so frustrated I just sat in the car and cried. I wanted to avoid that fate. I battled during my teen years with a host of things, addiction being a close friend. Maybe I was lucky I faced that so young. I was very healthy and to a teen months feel like eons and I was through my bottom and clean by the time I was 17. It wasn't an easy road. I made it harder for myself by being deceitful and destructive. Then I found my guy and the world seemed to complete itself. I have never looked back and never wanted to. Even before I converted to the LDS religion I didn't drink. I didn't smoke. The only time I ever took a strong prescription was when my girls were born and when I had kidney stones/infection or my wisdom teeth pulled. I don't even allow them to numb me at the dentist anymore. So this prospect has me very upset. I do not want to take pain drugs. The thought of risking that just terrifies me. Yet it has also been shown that so far the biggest proven help for FMS is pain drugs.

This potato is so overcooked.

Saw the Vampire!!

Had a visit with the Hematologist today. I have mentioned before that I was sent to him because I abnormally bruise and bleed and my bruising lasts for a long time. He ran the gamut of tests in the beginning and ruled out everything he could think of by blood work. We didn't go more in depth because my blood really didn't indicate a need. Anyway he has been monitoring me for over 2 years now. Once again my white blood count today was in the red. He isn't worried because while I go into the red every so often I bounce back up to normal between those low counts. As usual my lymphocytes were elevated. The lymphocytosis is why he has continued to monitor me. He was going to cut me loose from the monitoring and just see me if my PCP had a concern with blood work until I said she never does blood work. He was a bit annoyed at that. In his mind the fact that I have a chronic and as of now incurable illness that is being managed to him means that I should be having regular blood draws. So I will do a lab for him in 6 months and another visit in 12. Honestly the monitoring is a bit of a comfort. If I do ever get cancer we will catch it pretty quick. Plus his level of care and interest in me is a lot better than my PCP. I wish he could treat the fibro but it is not his field. Uggg... If only I could find a good rheumatologist here. I need to find one. I am going to call the one my doc tried to send me to again. According to our insurance she does work with us so maybe if I talk to them I will get in, lol.

All in all a normal day in the life of a chronic junky illness. Stupid fibro.

Shooting fun!

This has been a great weekend with my love home from work. Soon that will be a rare thing as once his machine is in the ground it requires 24/7 babysitting and that usually means 7 days a week for him. We took advantage! Saturday was spent in blessed relaxation with a dash of Bass Pro tossed in. I have a love/hate relationship with that store. I love all the things I find but I hate the dent in the wallet. Bought a ton of skeet so the boys could play.

Then today we got up early and went out to shoot again. The friend who joined us last time had made a couple purchases of his own and brought his wife along this time. She is a fibromite so it was nice to discuss shooting with someone who gets our specific drawbacks even though they are just now building their own collection. J.W. brought out one of our other rifles. I had never shot the .17. For some reason I had assumed it was like hubby's bad boy in the kick range and have just stayed away from it. Yeah I know I should know better after reading and stuff but hey, I am still a relative newbie. So i shot that today. Love the lack of kick. The rhythm of it was beautiful. The FMS difficulty was that I could not hold it up, shoot, chamber a new round, and shoot again. In a way it made my accuracy more surprising because I would have to lower my barrel, chamber, then raise again to shoot or my muscles threatened to give.  Left me with shoulders burning tonight but it was a lot of fun.

Nephew once again proved why I think he has major skills. Boys were shooting skeet. He had his 10/22 up and was just looking through the scope next to them. Both missed one of the skeet and with that rifle he shot the skeet out of the air. To prove it wasn't a fluke we had him lower and raise and shoot on the pull. Darn kid did it again. He has some skills.

So the day was good. I shot my rifle and the 9mm and got to play with the .17. Had the husband shoulder the shotgun so I could feel how it did with the short barrel on it. Still youch. Otherwise a very positive and fun day!! We needed it! There is some sick building in the house. 3 kids so far. I already have the aches so i know I am up next. Means I have a few miserable days ahead. I really need to find a good rheumatologist and stop putting it off. I need to get ahead of this fun that is my life. I keep saying I have accepted my new normal but just by not figuring out treatment beyond my meds shows I am not fully owning this and doing all I can to relieve the gunk. Uggg....... Fun stuff. Happy Sunday y'all.

Bad news/ Fabulous news and great new friends!!!!

I am a kick me and then lift me up girl so bad news first. I seem to be in a lovely flare due to our record heat. Yay me!! It sucks tush. Trying to get the 3 kids that go to school back on decent sleeping schedules for school monday adds stress and my previous post about family drama added stress. So I hurt. Boo.

Now to the FABULOUS NEWS!!! We have been BLACKLISTED. I know. Pretty cool right? Okay so if you are not on the list or your do not read the blogs on the list you probably think that I am in a Fibromyalgia induce brain fog and have completely lost my marbles. You would be wrong, teehehehe. See that pretty image over there -----> that says The Gun Blog Black List? Click it. My awesome friend North made this list. Basically a play on the fact that the anti-gun fun haters stalk us gun happy hillbilly dummies and talk about black listing our evil ways. So now there is a black list. A finer bunch of bloggers you will not meet....err....read, hehe. So go check out the list that we have been included on despite our newbie ways. Click around. You will find some great people there!!

Now for the new friends. I added some more links to our ever growing blogroll as well. I added a few and am sure I have forgotten who all I added but I do know I added Matt's blog Troublesome Times finally. We have another of his blogs up but this one is where he is at these days!!. We also have TinCan writing from Nine Pound Sledge Hammer. His wife has FMS like me and he writes a good blog. Very neat guy! Also got Tam's frequent partner in crime up on The Adventures of Roberta X. Red Woman is a fabulous read out of Oregon and her pics make me miss the PNW. Finally Tales From The Clothesline is awesome. A prepping mom that Stephen introduced me too. Fabulous writer!!

The Monster List for FMS and feeling rather out there.

As I try to figure out this thing called Fibro (And pull Gracie along because I am pretty sure it is what she has too since she has never been able to get diagnosed either.) I discovered a fellow sufferer who turned her high-octane exhausting career into a wonderful job where she gets to be home but still make money and she helps those of us who suffer with her. She became the Ask.com guru on FMS and Chronic Fatigue Syndrome. She keeps up on research and posts valid tips and things stemming from that research to help us in our own journey's. She has what she calls "The Monster List of Fibromyalgia Symptoms". It has over 60 things related to our lovely life. Some even are their own disorders or diseases. At last count I have 43. I am afraid I am developing another. I feel very frustrated. I feel like such a frumpy failure some days. Not trying to complain and my hubby tells me I am being silly but some days I am lucky to keep track of the girls and cook dinner. I am usually in shorts and a tank. I don't wear makeup. Being raised by a single dad until I was 16 meant that learning girly things never really happened. My amazing guy tells me often how beautiful I am and how amazing and I am so lucky I have that in my life because if I had someone who had no patience for this and who expected some perfectly coiffed barbie all the time I would feel even worse. Ugggg..... That is one of the rough things about this illness. It is ever changing and because we have to limit ourselves and completely change how we do things it means that we learn very quickly if those around us truly love us for better of for worse. I am lucky. I know some who aren't.


On another pity Lila party moment: I had a moment today where I was reminded yet again how very different I am from some of the people who should be closest to me. I don't know how it happened or why but I seem to be even farther away from some of the people I love. I do love them, so much. My life is about love. I just seem to have nothing what so ever to relate to them with. About the only thing we seem to share anymore is a love for my girls but even then it is rough because what we value is so different that often blind trust has resulted in some situations that haven't been ideal. Humph..... This trying to vent but also be respectful is a precarious line. I want to have good relationships with everyone I love but I also don't know how to do that most days. I am happiest at home or with my husband exploring somewhere, metal detecting, shooting, doing what we do. My faith is so important to me yet places a wedge because either they aren't sure they believe at all in anything bigger than themselves or they aren't sure they like what I believe. How do you find a place to heal old wounds to the point of closeness when you are so very different?

So this is how it went....

Hehehe. We went camping for the weekend. I went up Thursday with Monkey, Bug, and Nephew. I pulled the trailer myself on the 3+ hour drive and set up camp. The idea was to have me go up early before the holiday rush to make sure we had a good spot. None of us are afraid to rough it and actually enjoy it but one of the sisters is 5 months pregnant so we decided to use an organized campground with bathrooms and running water. That was the plus side, the down side was the people, the paying for the spot, and the fact that we couldn't have our quads at our camp. My nephew seemed rather surprised that I knew what I was doing with pulling the trailer as well as setting up camp. Goofy boy. I tried to explain that I camped a lot as a kid but I don't think he got it.

Friday early we took out the quads for a ride since nephew is a very capable driver. It was fabulous! Beautiful scenery and a huge well maintained trail system focused on the quads meant less hard to the surrounding area because everyone wasn't making their own trails. By 9 PM we went from 4 to 28 in our camp. Yes we make a big bunch and that wasn't every one.

Saturday and Sunday was spent together just letting the kids play. Each sibling took a meal to feed everyone so things were spread around evenly. We had quad rides, hiking, and cave exploration. We told stories, did skits, and made smores.

I think all of us were sad to leave on Monday despite the fact we were all in sore need of a bath. It is a wonderful treat to have so many of my husbands siblings together. (6 out of 7)

Now I am home. My reader has well over 100 posts to read. I make a dent and more pop up. If I don't comment a ton do know I am reading all of it, lol.

One bad thing is that now that I am home I am in a flare. When I am in a need to function mode I push everything aside and do what I have too. Since we were camping and that meant no child safe room, no ideal sleep environment, no sticking to my diet and the like I pushed on, ignored my body and functioned. Now I am paying for it. I hurt all over. Large smears of dirt turned out to be bruises and even Tylenol is not touching things. I stumbled across a wonderful website called But You Don't Look Sick and the creator has a great way of explaining her Lupus. FMS is very very similar to that. By her spoon theory I borrowed against my spoons and am now spoonless for a bit until I can recover. It sucks like crazy but I wouldn't change it because I had so much fun being with every one. I did hold myself back on somethings and I did make sure that when a ride was being especially brutal I took it slow so as to lessen the beating my body took. I have learned to try to balance though I admit I didn't do a very good job of it this weekend. I won't be surprised if I end up sick on top of my flare. Bleck!

Well I am off to bed blog friends! Night. I am glad to read of all of your doings and thoughts and look forward to continuing to catch up!

Oh and the chili was amazing!!