Some Days Are Worse Than Others

The title says it all and it is the story of my existence. I was about 33 when my Lymphedema symptoms began, problem was no doctor I went to knew what it was. No one could figure out why my right leg stayed puffed up or why I retained fluid the way I did. Heart? Nope. Diabetes? Nope. X.Y.Z., 1.2.3?? NADA. Finally after about 2 years and two hospitalizations someone figured it out. Then I spent another two years trying to find someone who could help me. I finally realized that I was my best advocate and healer so I hit the internet for answers. I learned more in 6 months than any Doctor could tell me. I am not saying you should not see doctors, I have a wonderful one now  I would not trade for the world but I do believe we have to take our lives and health into our own hands and used good judgement. We have to push our way through the red tape and the lack of care that can sometimes be presented in the form of cut backs, non availability or just plain ignorance or lack of care.

After my husband died, I was left with no insurance and I was in the situation of not having enough money to get good medical care but not being poor enough to get Medicaid/free care. I struggled with my medical conditions, new problems presented themselves And my condition worsened to the point I became disabled. I applied for disability but because My husband and I made the decision to home school  our kids I stayed at home most of their childhood and did not work the preceding 10 years from the time of my illness so therefore, I did not accumulate enough "work credits" in that 10 years to get disability. Never mind the years I worked before I was a mother  and let's not count the years I worked to save up for the house I currently live in. I can collect a portion of my husband's SS when I am 70, how nice of those *&%$#@

Anyway, I deal with pain, depression, aggravation, stupidity, red tape, indifference and just plain "I don't give a shit" attitudes all of the time. I do not ask for pity, only understanding. I don't want a hand out, I want a hand up and I want my tax money I invested in the SS system when I was young, healthy and working! I want more programs to help people who want to help themselves. I want less spoon feeding and more opportunities to get up on your own two feet and thrive without welfare or any government involvement . Most of all, I want The Health Care System, The Government and Society in general to realize and truly UNDERSTAND that having Lymphedema is life changing and painful, and debilitating and agonizing. The care we have to have, the things we go through daily just to be able to walk around without collapsing is exhausting. I cannot enjoy a movie with my kids, I can't sit long enough to watch a movie. We do movies at home where I can lay on the bed or sofa. I can't go to family parties and outings unless I have access to a place where I can lay down or at least prop my legs up. I cannot walk long distances so there goes anything fun like hiking, flea markets, the beach, public festivals and celebrations. I could not even enjoy the Fourth of July fireworks downtown with my mom and kids, I couldn't endure the walking or the sitting. 

No one understands the loneliness, the isolation, the feeling of doom and gloom. The feelings that life is passing me by. I can not do any of the things I once enjoyed. I loved live music shows and dancing.... OH I loved to dance! Those days are over for me. I can't walk most days without stumbling and I fall several times a year. This past week alone I fell twice, one time was really hard, full body weight on the concrete side walk, right on my right side which is the worse side. I can't even garden or work in my yard like I once did. I can't walk the dog, I can't run and play with my little niece. Little things most people take for granted every day I can't do. Oh I try... believe me I do. I either end up hurting myself or I end up in bed for two or three days in agony. The worse part and the part I try to ignore is the judgement of others. I hear the whispers and I hear the grapevine rumors. Instead of compassion and understanding, instead of offering to help around my  house or take me out to do something I CAN enjoy I get indifference or unkind remarks or just flat out ignored. 

I kept my latest diagnosis to myself, I knew it would draw negative comments but I finally told a family member who blabbed to everyone and next thing I know I hear that I am CRAZY. I called the family member and two other people that I knew would run straight to the grapevine and informed them that My Shrink says I am NOT crazy, life has just kicked my butt one two many times and I am a strong, intelligent articulate lady who happens to have a near non existing support system and way too much BS for one person to have to deal with alone. I have Post Traumatic Stress Disorder folks.... I am not crazy, just filled to the top with stress and anxiety and I am BS intolerant. My medical doctor advised me to get some new friends, find some new hobbies I could do and leave all the drama filled family stuff FAR behind. So, that is what I have been doing. I have become selfish. I have become self-serving and I have become self-centered. I should have done it years ago.... 

So today is pain filled and I have sat at the computer typing this far longer than I should have. I have to go now and lay down for at least an hour then go do a sink of dishes and lay down for another hour. This is my existence. Pain, Aggravation, Doctors, Medications, Special diet, Special Exercise, Special Accommodations and Needs, Depression, Anxiety, Worry, Boredom, Grief and an entire plethora of other issues that have made my time here in this world a mere existence, no longer a real LIFE.

FIREWORKS!!

HAPPY INDEPENDENCE DAY!! 

Today was a lazy day, cooked hamburgers with mom and the kids and just hung out with them outside. It was unusually mild today, not even hot. In fact, right now there is a cool breeze blowing and the humidity has dropped.  

This evening mom took the kids to see the fireworks down town and as I write this, they are there waiting for the festivities.  I, unfortunately have to miss the fun because my leg, as usual is acting up and it is not safe for me to be in crowds with the way I seem to fall on my face so often. Having a mobility issue sucks when you LIKE to be mobile. When you LIKE to do things and go places and you can't. Not safely anyway. I have fallen twice in 5 days, the first time was full body weight on the sidewalk and the second time was going up concrete stairs, two lousy steps and I fall on my knee, head and arm.

It is not a total bust, there are fireworks all over the hood tonight and I am watching a nice show as I type. We have a bottle of Blackberry Merlot for later and I am going to be with the ones I love so life isn't all bad :)

Oh wow, it has just started to rain! What a bummer, I hope the show isn't canceled! There will be some disappointed peeps coming home if it is :(

Idle chatter on a hot day....

It has been blazing hot here in J-ville Florida, the humidity will kill ya. We don't have air conditioning so the heat makes us all tired and unfortunately LAZY.  There is so much I need to do yet I do not have the desire nor the energy.  My poor plants wilt if they are not generously watered every day and I do so hoping to have a decent harvest of veggies.  So far I have had some onion, garlic, peppers and greens. I am waiting on broccoli and more peppers.  Mom bought me more seeds, Blue Lake Green Beans, Carrots and Bib lettuce. The lettuce has to be planted later, it prefers cooler temps but the beans and carrots will be planted tomorrow.

I am having problems with my chickens eating their eggs and I have followed all of the online advice I could find so I think at this point I just need to start over with new chickens. For the price it is costing me to feed them, I could be buying a whole lot of eggs!  The idea behind having chickens and a garden was self sufficiency and to add to our food stash. I fear hard times are coming, things will only get worse and I think more people should be thinking about growing food and storing some away for a rainy day.  I advise everyone to at least put together a two week emergency kit. Make a list of everything your family would need for 2 weeks and slowly buy those supplies and build your kit until you have all you need. After that, you can buy more items and expand  beyond two weeks. 

Yes, I am a long term prepper, I store long term items and as much of everything as I can but even if you don't have the desire or room for this  at least have enough on hand to get your family through an emergency or unplanned event such as job loss, illness, etc. You just never know when this may be the edge you need to get back on your feet or stay on them...

The Male Species....

I know for certain I will never understand the male species.  It is extremely hard for me to trust people, but especially men. I meet men all of the time who fall head over heels for me in pictures even though I tell them the Gothic make up washes off, you still have to deal with the woman beneath and she can be a handful!  Still, they come forth and they swear they are different and they say they love who I am and what I look like under the make-up then within a short amount of time they just disappear or I catch them in all kinds of lies or find out they are on sammich shy of a full picnic. I am quirky, I am unusual, but I meet some down right crazeeee men!

  The latest man I met pursued me for a couple of weeks online, finally started exchanging regular e-mails then text then phone. He says he was divorced , lived outside of Jacksonville and owned his own business. At the time he was working out of town supposedly and was calling me every night for days and we were making plans to meet when he came back to town. Suddenly he just stopped calling, stopped answering my calls and texts and has just disappeared. I checked with local hospitals, hospitals where he said he was working and yes... even the obituaries but nothing, nada. Everything seemed awesome, the last time we talked he was saying how he was suppose to be back in town in a couple of days and he could not wait to see me.  So, I left one last message, waited for four days (at this point it had been over a week since I heard from him) and last night I deleted him from my phone.  I just wish he would have at least said goodbye.

 I am a closure kinda person, I need it. It drives me nuts not to know WHY. Same thing with my ex bf, After two years in a relationship he just stopped calling and answering my calls and after a week he finally answered my text and said he was moving on and when I asked him why he didn't tell me he said "I figured you would figure it out" So this time it took me less time to "Figure it Out," I was just hoping for a different ending. At least it didn't take me two years to find out that I had made a huge mistake.

 So.... Once again I have decided that men are way too unpredictable and usually crazy or filled with secrets and/or lies.  Once again I have searched for my new dark Prince and once again I have been disappointed. I have come to the conclusion that there is  no Dark Prince for me, only memories of my one, true, dearly departed  Prince, the one and only Knight of my heart. I think I would rather live with the memory of the love that was real and lasting torn apart by mortal death  than to keep searching for something that is a mere illusion and fleeting and filled with deceit. Yes, I would rather be married to a memory than to go another round at creating a living reality. How very sad.....

Back from the Land Beyond...

Well here I am, a year from the last post and I promise I have a good reason. The pc died, fried to toast and the one we were given was very old and not able to perform even basic functions so I have been waiting patiently until I could get another computer to get back on my blog. I have the pc, now I need to get back to work.

My personal situation is better, not great but better than last year so I will call that a major blessing. My health continues to deteriorate but that is to be expected of Primary Lymphedema. There is no cure, only maintenance. I still refuse to pollute my body with narcotics, I use herbs (legal ones :) )  and I take muscle relaxers to ease the cramps in my legs which are what trigger the worse pain. On a bad day I take Ibuprofen, on a real bad day I just lay in bed and wonder who I can bitch slap to feel better. Actually the list is long, but the consequences not worth the momentary joy... well... maybe it would be worth it, I will have to seriously think that one over :)

My life has seriously changed in the past 9 years, even more so in the past three. I long for the days of past when I worked the clubs, danced, partied and was the Gothic social butterfly who had few cares and lived for the moment. I have learned many lessons, have experience some major defeats but I refuse to let it control me. I won't fall victim to my past and I will not repeat past mistakes. 

I am writing again and trying to figure out some way to make some extra income. My disability was approved but the payment is small and barely covers the bills so I need to be smart and creative. I am gardening again but due to my limitations physically I have to grow my veggies and herbs in containers which is ok by me, as long as I can still grow them.  I have chickens too and I am adding more edibles as much as possible. In my blog a year ago I kinda ranted a bit about preparedness and how everyone needs to learn some skills and grow some food. I still feel that way but I don't want to get preachy about it so all I will say is don't think the Government will take care of you in an emergency and don't think you will be able to get by on credit cards or that people will band together and help you. Perhaps at first, but if things really go South, except for small communities and bands of family the only person that will help you is YOU.  

So I will try to be diligent about blogging, it's a good outlet because I do spend at least 5 minutes a day suppressing the desire to bitch slap someone so maybe this will be good therapy :)

Until next we meet....

Your  Fairy Gothess Mother

:)

Has It Been This Long?

I created this blog to vent and hopefully enlighten and educate a few peeps but I have not done much with it.   I get so side tracked with what's going on in the world and life in general I  let weeks, then months fly by.

I have gone through some changes in these past few months, I think it actually started 4 years ago. No, it was almost 8 years ago when Mike (my husband) died.  I am not the same person I once was, in fact I know I will never be the person I was. Part of who I was included Mike, his influence, his support and most of all his love. I spend most of my days wondering if he would be disappointed in me, hell I am disappointed in me. I have made some decisions that have not benefited me, but at the time I thought they were sound.

 I am currently undergoing a transformation in my life that I hope will lead to better things for myself and my kids. Michael is about to enter Job Corps and Rhiannon is leaving March 15th for a train trip to Connecticut. She is supposed to only stay a couple of weeks, maybe three, but she has friends that want her to move there and if she can find a decent job and a place to live long term she may stay. It is hard for me to accept that my babies are no longer babies. They think I don't trust them to be their own person and live their own lives but the truth is I don't trust the world. Maybe I have become paranoid  but this world has become too wicked and my kids mean everything to me. I want to protect them and guide them and make sure they have everything they need or at least the means to get everything they need.

 Life has been hard for us, with lots of ups and downs and for the last two years it has mostly been down. Financially, I am the most broke I have ever been in my adult life. Emotionally I am the most fragile I have been in my entire life.  I have isolated myself for the most part, I just don't want to be around people. I have had too many so called "friends" abandon me, Too many family members back stab me and too many people in general take advantage of me. I tend to keep to myself mostly and the eerie thing is I LIKE it. I like being alone. I feel safer, I feel less stress. I don't want to be surrounded by fake ass people who claim to care only to show later that they are just like everyone else. Save me the drama and the trouble.... I get tired of fake ass smiles and fake ass "I love You" comments. I don't even read face book anymore, I catch people in lies there, funny how people like to post all of their dirty laundry for the world to see then get upset when they are caught in a lie. Don't insult me, I may have a broken down body but my mind is still sharp.

I have found that I have little tolerance these days for the outside world, little tolerance for most people in it. I see the world in general as going to hell in a hand basket and most people are happy to go along for the ride. Most people are spoiled and have a sense of entitlement. Most of them are clueless about how bad things are getting in this corrupt world and within our own corrupt government. Our entire society is on the verge of collapse but people exist  and go on like nothing is wrong. I see our country as being divided into several socio-economic classes and most of them are the have nots or barely haves.Unfortunately most people have put themselves into this mess and refuse to change. I tell people all of the time they had better prepare for troubled days ahead by doing simple things like paying down debt, store up food and items you need, store some gas, invest in some silver and most of all, learn to live frugally and learn some skills that will insure your survival should we have a social breakdown. Most people think i am nuts but we will see who is starving and doing without and who will be comfortable and fed. I truly believe things are going to get ugly in the next five years, hell it is already bad!  Most people just don't realize it yet....

Anyone with half a brain and a clear focus reading this please start making changes today.... Store some food, learn wilderness survival, plant a garden, learn some crafting skills, buy a gun, get plenty of ammo, pay down your debt and secure your property and family. Take off the blinders people and PLAN!  It is the only way anyone has any chance of even attempting to survive... the government sure as hell won't be helping you and if you think they will you are a fool.  Educate yourself and prepare for your families survival. Get hard, get tough and get READY!

Menopause: AKA A Day In Bitchville!

Yes! I am menopausal! And all of you just thought I was a natural born bitch :)  Well, yeah, I guess I am, but the hormones bombarding my bloodstream certainly do not help matters. I have no idea why (other than the menopause) what my problem was today, I just woke up all weepy and crabby. Poor kiddos got the riot act around 7am followed by an emotional sobbing outburst, then a burst of physical energy that had the house clean in an hour. I had a shower, breakfast and retired to my sanctuary by 10am.  I was fine after that, down right pleasant in fact.  I do't know who pissed in my cornflakes but I think they got the whole box!


At least my pain level wasn't as bad as usual, otherwise the hissy fit may have lasted all day. For those of you who don't know me personally, I have a chronic illness that affects my life in many negative and not so fun ways. I live with daily pain that ranges from "Dang, that hurts!" to "Oh My GOTH! Somebody gag me and flog me and......" No, wait........ Somebody get the freakin morphine!! Actually I do not take medication anymore than I have to and I don't take anything strong, but some days I pray for the legalization of Marijuana. Oh yeah, I prayed for that before I got sick, silly me :)