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.

National Sibling Day

Today is National Sibling Day. I have been very blessed in that department. I married into a family of 7. My guy is the middle. I was very close friends with the 6th long before he and I met. So when we married I was added to the fold like another sibling. I talk to his sisters more than he does usually.  And his eldest brother is very protective and great at making me feel loved.

I also have 3 adoptive siblings. They've never made me feel less even though I've lived away from everyone for over a decade. I'm included in everything even if I can rarely make it.

I have 1 biological sibling. He is a couple years younger. Long time readers have seen me boast, fret, worry, and agonize at distance. I've vented when we fight. We're in a place where he has pretty much disowned me. And honestly that's okay. He doesn't understand choices I've made and I can see that. He hasn't seen me every day to watch my health fail. He hasn't been to the monthly doc appointments. He hasn't watched my weight plummet and jump for no reason but that my body is rebelling against me. He hasn't held my hand at heart appointments and hematology workups as we analyze all the ways my body keeps refusing to get healthy. He hasn't held me as I cried because I couldn't climb a hill with my kid or swim the length of the pool. Or cuddle in the same position. Or even stand up.

He has seen me maybe 3 times in 5 years. And those 5 years have resulted in a completely different me. And have meant making horrible choices. Choices to give up work I loved because I just couldn't keep up. Choices to end friendships, to isolate myself more as I poured every ounce of energy into my family. And not even into house work but just into the loving of them. The cuddles and emotional stuff they needed. I had to make hard calls on all sorts of things.

And one was that a relationship with my father was just too stressful to keep fighting for. I love my dad. I genuinely believe he loves me and my kids. I believe he wants the best for us. I even believe he has realized how amazing my husband is. We just communicate in incredibly different ways. And while it isn't his intention I'm often left very hurt by our meetings.  I know that, especially with my health so crappy, I just don't have the energy for that. And I am sorry that hurts my brother and my dad. I know it sucks to be the person cut off. Which is why I don't blame my brother. He is angry and frustrated and feeling protective of our dad. That's a wonderful thing. On days like these I miss who we used to be. Healthy and fun and best friends. And I pray for him often even if he doesn't believe in God.  I do. I believe in him. I'm proud of him. I wish him nothing but wonderful things. I truly hope he has a phenomenal life.

Happy National Sibling Day brother.

No-poo or as I prefer to call it "Chem-free hair"

This is day 1 of my new chemical free natural hair care journey. Most call it "No-poo" but poo sounds too much like poop to me and poop related to my hair is just ick.

Okay to start from the beginning. I liked this idea for 2 reasons. First I have always been chemical sensitive but as my fibro has progressed it has become worse. My skin hurts and burns from deodorant. My body itches from regular soap. And my scalp is an itchy mess. My second reason is the practical side from a prepper angle. If SHTF I hope to still have fabulous hair.

This pick is 2 days in. On day 1 I did a clarifying shampoo for my final chemical wash. It is supposed to shorten the transition time. I finished it off with my new form of conditioner. A spray bottle filled with water, a 1/4 cup apple cider vinegar, and 10 drops of peppermint oil.

The second day the real fun began. I used a pointed tip bottle with a cup of water and 1 1/2 teasp of baking soda to scrub my hair. Just squirted the mixture against my scalp and scrubbed. Rinsed. Then sprayed my hair and let sit a bit and rinsed.

My mixtures might change as I try to find the right balance but thems the basics. I plan to blog every week at least to keep track of the progress. Hopefully it makes my scalp better. Others have reported that their hair has thickened, strengthened and the color became more rich. I'm excited to see what happens.

Why talk about being sick?

I take part in a great weekly chat on Twitter (@writerkimwalsh) every week called #SpoonieChat. This week a question was asked by a participant. "Do you write about your illness anywhere else and if so why?" Of course I answered in that little allotted window that I do, to hopefully share my blessings and raise awareness. I wanted to expand here though.

I am sure to some on my fb I probably sound whiny or like a complainer. I honestly am one of the most positive people ever. I have to be. After my diagnosis I joined groups, followed pages, collected links. One thing was clear. Almost every person facing invisible debilitating illness feels alone, unheard, and unable to share their thoughts and feelings.

For years I'd been sick. Over a decade before diagnosis. And I rarely shared how I felt. We had family live with us who were surprised by how awful I tended to feel. I learned to hide it from a dad who brushed me off and a brother who laughed at me. To them I was an oversensitive manipulative drama queen.

Once I saw how similar others felt I knew I had to help that. I am lucky in that the man I married, my children, my inlaws, and my Mom are very loving, understanding, and compassionate. Once I was diagnosed they researched and rallied behind me. So I vowed to be brutally honest about how I felt. To show that 1: those feelings are normal, pain is shared 2: no one is alone 3: you can still be happy despite an illness and 4: to help others see the life we lead is still full, still.

This is a battle we are not alone in. And the more we share with the world the more we realize that as well as teach others understanding.

I know I'm in my own way but I feel stuck.

I've been looking for inspiration in many places these days. Trying to get back to writing. Sometimes just combing through the #writingprompt tag on twitter works to move me. Today the one that jumped was "Write about what is getting in your way."

Honestly I am in my own way. In my writing career, in my life in gerneral. I just have no idea what to do about it. Blaming my dad and the regular self esteem slaps or my fibro is easy and even truth in a way but honestly it comes down to fear. Fear of failing at writing, at being a wife and mom. Fear of the unknown. Fear of pushing my body into another setback. Fear of letting those I love down even more. Fear of my dreams being permanently taken.

It sucks to realize I am held by fear.

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!

Off topic

This post is not about politics, guns, prepping, or anything relevant to our usual topics. I just needed a place to put down my thoughts.

   I was recently diagnosed with adrenal fatigue. It has caused me to be hypoglycemic. It has also caused a hormone imbalance, low blood pressure (like low enough that I should go to the hospital almost weekly), low cholesterol.....oh yeah and I also got mono on top of all of that.
   Fun stuff, right? I forgot to mention fibromyalga also goes hand in hand with adrenal fatigue. Lila was right. She has been convinced I had fibro for years.
   My doctor is big on changing lifestyle rather than handing out meds. I like that. At least I thought I did until I was told I could no longer eat carbs or sugar. Honestly, I am just griping. I needed to cut way back on those things anyway. And I really WOULD rather fix this with diet. I have to be careful to balance any carbs or sugars with protein. If I don't my blood sugars skyrocket then drop low enough to make me lose consciousness. One good thing that has come of this is that my little Boston terrier is now a service dog in training. She had been cuing in on my lows long before I knew I was having them. I just thought I was sick. One morning she jumped up into bed with me and refused to let me up. I checked my sugars and was very low. She now alerts me when she smells the change in my blood sugar level and when I ask her to check.
   The hormone imbalance can be reversed by eating three eggs a week. I am not fond of eggs and this has been hard for me. I am learning to be creative!
   The low blood pressure can be raised by adding more salt to my diet. It is more of a long term fix though rather than a quick fix when I find myself in trouble. One way to raise blood pressure quickly is with caffeine. I don't drink coffee or black tea (yuck). Pepsi or most other caffeinated beverages are out because of the sugar content. I would just be fixing one problem and creating another one just as bad. Energy drinks can cause stroke and I am already high risk due to the blood pressure issue. So what's a light headed girl to do? I found some energy strips at our local GNC that are caffeine, ginseng, and Vitamin B. PERFECT! I keep those in my purse along with my blood pressure monitor and my blood glucose meter and my jerky. I have had to learn to carry a big purse.
   The thing that is honestly the worst is the fibro. I absolutely loathe feeling this way especially when there isn't a lot to do about it. Today is a bad day. Yesterday was worse. I have a lot on my plate and no one to help take up the slack. I can only work outside when it is cool. I can only work in the house until my body screams at me to stop. Stress shortens the time I can do anything. I have three little boys who create stress and toss it around the house like confetti. They fight, they destroy, and they make messes faster than I can clean them even on a good day.
   I feel stupid. I lose track of conversations even before they are through. I will argue a point with someone until they laugh and point out that they are saying the same thing I am. I am just too out of it to realize it. I almost wish I didn't know about the fibro. At first I was relieved to have a diagnoses of any kind. Now I have a name to get mad at. I KNOW what is causing me to feel this way and it pisses me off. Maybe it is just something to blame, but I sometimes find myself in a fury with an invisible foe. It's hard to fight an enemy you can't see or smell or touch. I can however feel it and it sucks.

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!!

It is National Fibromyalgia Awareness Day!!!

It is a day pretty important to me. FMS is a large part of my life though I have tried very hard to not let it be the defining point in my life. I was officially diagnosed about 8 months ago. I think my journey started when I was 14 though. I read an article recently on risk factors for fibromyalgia and discovered I fell into a pretty much guaranteed group. I am female, I discovered through research there is a family history of it on my maternal side, I have sleep issues, I have a personality that hates stress and gets depressed easily at times, and I suffered an auto-immune illness in the form of Mono as a teen. I was a walking bottle of FMS perfection.

So among the beautiful plethora of symptoms/concurrent issues I have the obvious widespread pain. My legs tend to be the worst and I have had that for as long as I can remember. It can be anything from a dull ache to a minor throbbing to an intense burning and can be just my knees or from toe to hip. Over the last few years the pain has spread. In times of stress or when I am on my period the pain can be through my shoulders, from finger tip to elbow, base of by neck, across my forehead, base of my spine, lower pelvis, and jaw. I have been diagnosed with TMJ, which is a lovely jaw issue that can require surgery and means I sleep with a mouth guard to help reduce the pain. I have migraines. Luckily I started meds for those and have been able to go from a couple of days a week to a couple a month if that. I have developed a lovely oversensitivity in the pads of my fingers and toes making certain days very difficult to walk, cook, write, type, touch anything, and I removed my acrylic nails because getting them done became agony. I have the extreme fatigue. Getting one major chore done along with the needed daily chores and taking care of Lexi in a day is a good day! I have discovered that my issues carrying my babies very likely relate to the FMS making the choice to tie my tubes a good one. I can be very forgetful and tend to have lists in my phone for everything as well as all tasks scheduled into my calendar so that I won't forget. My joints crack regularly and fairly painfully. I suffer from depression. I am obsessive over certain tasks and need order in certain things to reduce my anxiety.

Those are the bad days, lol. Stress increases the chance of a bad day. Over-activity increases it. I tend to isolate myself from situations that could cause stress to reduce the chance of bad days which makes me come off as a hermit. Add that I genuinely love just being with my husband and girls watching movies and i often frustrate others. I promise it is not you. I really just am content in my solitude and much less likely to be miserable so I don't venture out often. I am on a great medicine called Savella for the FMS and it has helped to make the good days out number the bad days. I absolutely still react to stress and still have days where staying in bed would be lovely if I didn't have a toddler. I am blessed to have a guy whose response when I apologize for being a broken horrible wife in my worst moments just hugs me and says "You may need a little extra patience and a little extra care, but I would not change a single thing about you!". He is one of the best things in my life. I am just like everyone else it just takes me longer and some days I am lucky to get to it at all but it will get done eventually. I love as much, I laugh as much, I cherish every moment with my family and I count every single blessing in my life. Fibromyalgia is one tiny part of me, it is not who I am. I am a wife and a mom. I am a writer, a designer, a reader, a cook, a teacher, a lover, a friend. I just happen to have Fibromyalgia.

CNN has great info on FM and you can also learn more at the National Fibromyalgia Association website. Take some time to read about it and learn. It is not in my head. It does not mean I am a hypochondriac. It is a real syndrome that affects millions around the world and each and every one of those sufferers deserves your love, understanding, and support!!!