Friday, August 30, 2013

Even in the Darkness I See the Light

Here I am again. Can you guess why? Never in a million years did I think going off these wicked drugs would bring me down so deep I feel like a prisoner in my own body. I thought when I decreased the drugs it would be like magic and I would feel better. I thought the fatigue and lack of any energy would disappear and I would be fine. Wrong. It is worse. This week I have stayed home everyday and tried to get myself moving with no avail. So I did what any person in detox would do, I rested. My pain, swelling, and stiffness have increased significantly but I am hoping the longer I am med free and if I continue to be wise on the food choices I make that I soon start to feel better. I tell myself seven years of drugs in my system and a few weeks off isn't going to cure what ever the I want it to cure. My sleep has been greatly disrupted by pain as I flip and flop more than I ever had before. Getting out of bed is torture. Typing this hurts my hands. I want my coffee but I am being vigilant about not putting inflammatory drinks or food into my body. I know coffee may not be bad for inflammation but the sugar and powder cream are. I instead start my day with tea. I have many varieties to choose from and to sweeten it up I am using honey. I am forcing more water down the hatch in hopes that is cleans my system out faster. Plans tonight are to go to a few stores with Rich and out to eat. I'm pretty sure the dinner will not be perfect but I will keep doing what I am doing the rest of the time. When I ponder on this new journey I wonder. Wonder if I will be able to stay off the drugs. I wonder if I am  strong enough. I wonder in a month if I will be better or worse. I tell you if I continue to get worse I may be forced to add a drug. Do I want to? No way! I really don't. I know I am strong in fact I know I am very strong, maybe not physically but mentally because if I wasn't I would have caved last week and already started back on the drugs. But then if I did go back on them and not give my body a chance to see what happens then I would wonder what would have happened if I waited. I don't want to live with that regret since I have been contemplating this no drug thing for well over a year. I cry out to God and wonder if he hears my cries, sometimes I wonder if he even cares. I have to believe he does and I have to believe he will lead me out of this dark valley when the time is right. His timing is always so much different than mine. Time will tell and for now I push on. Mind over matter. When my body hurts and forces me to lay down, I do it. When I feel parched I drink even though I have been drinking enough to hydrate an elephant, water is good for you, remember? When I want to eat the ice cream in the freezer I tell myself, "You think you feel bad now? If you eat that things will get even worse," and so on. It is a struggle almost a challenge for me to be the winner in all of this but I can do it! At least right now I can. I know as long as I live in this minute telling myself I can get through it, and don't look to far ahead, it makes it a little easier in some odd way. I have always been the end person. You know the one who sees the end in everything. Every project, everything I do has an end and my goal in this is the end but I have to say this non-drug life makes it hard to see the end, at least the end I want. I don't know what is going to happen and for me not to have control is scary and I don't like it at all but I will use my mind to fed in the good instead of trying to figure it all out. When I think to far ahead it gets sort of jumbled up and I can't think straight. So for now I think of today. Getting ready to go out into the world that has no clue. Watching people race around in the busyness of what? I don't understand that world anymore and have a hard time in it. The pain and fatigue will make that even harder tonight but I will have my sidekick along for the ride so that always makes it easier for me, not for him I am sure. I must go now and lift myself up to make it the best day it can be!

God Bless!


Monday, August 26, 2013

Another Perfect Example

Yesterday as Rich was reading the Sunday paper he said to me, "Here you go. Michigan State is looking for people with chronic illness to team up with a first year student, you should do it." I've heard of this once before but it was a little different. The participants would be sent into the room with a certain disease, which they really didn't have, and the student would diagnose them, as the mock patient recited from memory all the things that were not wrong with them. This new program is much different as the student comes to the house of the chronically ill person and interviews then six times a year in the patients own home. It sounds like a great program. The student gets more personal and actually sees, not only how the patient lives, but the day to day struggles the patient has in their own home, on their own turf. I always say that when you go to the doctor for a twenty minute appointment there is no possible way you can explain what has been going on with you for the past six months in that short of time. Living with chronic illness is much different than that. plus, unless you are really down, you are looking your best when you go to the doc, which looks much different than your daily life and grind. On some days it is a night and day drastic change so having someone actually come to your house sounds like a perfect lesson plan.

Rich and I had a nice day together yesterday celebrating our anniversary. When we got home I was in so much pain I had to sit and pull myself back together so I decided to read the article. Much to my surprise they only wanted people with "real" chronic illnesses like parkinsons disease, cancer, etc. Of course there was no mention what so ever of the over 100 autoimmune diseases that millions of people deal and suffer with on a daily basis. I might add not only suffer with but also do their best to live with and have some sort of a normal life. After I read the article all I said to Rich was,"They only want people with real diseases not the ones like people like me/us who live like we do.
I still don't understand why autoimmune disease is swept under the rug like it is no big deal. My only speculation is that there isn't much known about autoimmunes so it is easier to pretend like people don't suffer as much as someone with a "real" disease. I use to get so mad about things like this but now I sigh. I get sad. I don't understand. It breaks my heart for all the people who suffer from this real pain that can knock you on your butt in an instant. Example: Yesterday after our date we decided to stop at the store to pick up a few groceries. We got inside and I knew it was a bad idea. We walked over to the produce and the pain I was experiencing was so bad I asked Rich for the keys and was forced to go back to the car. I don't understand how diseases that are no big deal to the world can knock you on your ass in a minute or why these diseases are not taken seriously.

I thought about the article for a few minutes longer in silence as Rich did some stuff at the kitchen table. Then I told Rich it always makes me chuckle when people don't care or haven't cared about what we go through between taking care of me, treatments, appointments, loss of life so to speak, etc, but when they get sick or have arthritis they want me to answer all their questions. Annoyed? Yes! This really gets me because I don't understand. Just as the world doesn't understand autoimmunes I don't understand uncaring people.

I wish I hadn't read the articles and this is the reason I don't read the paper or watch the news. Like I said I don't get angry but it stirs up emotions I have spent countless hours working on controlling my mind when it comes to being ill all the time. Hours I have spent finding my peace and just being okay with it all. In the end it is all good. Just another perfect example of how autoimmune diseases are not taken seriously. That's all.

God Bless!


Thursday, August 22, 2013

What I Wish People Could Understand

Living a chronically ill life in a healthy world is hard. After the past few days I began to think hard once again on this subject. I try my hardest not to do this as I have accustomed to the normal world and know what to and what not to expect from it. Why then, at times like the last few days, do I start to dissect it over and over again? I don't know. I guess it is the fact that even though I look healthy I know I'm not while everyone else see's the put together part and has no idea what so ever what I and other chronically ill people live with. Once again, no worries, I am here to educate.

I am still in wedding recovery mode but I would do it all over in a minute. If you have been following me you know I am off all my arthritis drugs now. If I am able to stay on my feet I do fine fine. It keeps the joints oiled somehow but I have no idea how. The absolute hardest part is sleeping. The pain is keeping me awake all night long. I am stiff as a board and my brain wakes me up screaming at me telling me to move. The worst part is by the time I am finally able to sleep it is early morning so then I end up in bed until ten or eleven, except for the past two days. The first thing I wish people could understand is you do not call a chronically ill person before 10 AM, even then you are pushing it. My nights are not good so when I finally get to the stage of sleep where I can actually sleep I don't need the phone ringing to wake me up. Fortunately my friends and family understand this but how do you get the stupid telemarketers to understand this? Or the mail order prescription place? Or the.........insert whoever else who doesn't get it here. I know when the phone rings that early I need to get up and check it because if it is my family and there is an emergency I want to know, not an issue for me when it is them. But when I get out of bed and make it over to the phone moaning, groaning, stretching, running into and holding onto the walls to finally get there and see it is no one who really needs me I get angry. My mind goes to that crap place where if I could reach through the cord I would grab the person and wrap it either the cord or my hands around their neck. Yes, I do have an evil side and when it comes out it isn't pretty. So lesson #1 DO NOT MESS WITH MY SLEEP it is not a great way to start the day because I am pretty sure I would have slept until noon today since the same thing happened yesterday morning. Sleep is crucial!

The next thing I wish people knew was that the phone call forced me to wake up and call back the person who called right away. Half asleep and still in pain it had to be done. It was like a business call where I had to do some thinking. Calls like these to most people are not a big deal, for the chronically ill they are exhausting. On the phone for almost an hour and I feel like I need to go back to bed especially since I feel like I am still there anyways. Time to the chronically ill is precious even a tiny amount of time on the phone can wear us out. Yes, I know, it makes no sense to some but to those of you who live it, you understand perfectly. #2 Understand ill people get wore out very quickly so make you time with them short and to the point,

The next adventure happened not much after I did the business part of the day. I turned on the computer and guess what? No internet connection. Of course in my head I am thinking this is going to be a great day.
It seems with every storm there is some issue here with our internet or our television. So I did what needed to be done and got it working once again. By the time I came back up stairs the tv was working and after it goes out and reboots it always goes to the Christian channel. There stood a guy with a piece of blueish gray cloth asking people to send in a donation and they would send you the blue cloth which was sure to cure your cancer if you shoved it down your shirt and kept it with you all day. Are you friggin kidding me? This kind of mumbo jumbo drives me mad and I'm pretty sure if I could have put my hands through the tv I would have strangled him with my bare hands too. I believe, I pray, I pray for others, I believe in miracles but I don't believe sending in a donation into somewhere is going to cure you. I can't believe a piece of fabric is going to cure you. Sure it might comfort you if you believe it to but cure you hummmmm. What a racket they have going. Plus, my biggest question is, "What do you tell those people who keep your stupid cloth in their shirt and still die?" I wish people could understand these lies they are told. God doesn't work like this, at least in what I have witnessed in my life. #3 Don't fall into the traps that make people rich. I know it may be easy for the ill to do so especially if they have no hope left. Your hope has to be in God and in your beliefs not in what a baldy on tv tells you.

This was just the beginning of the day. I have been up for and hour and a half. Crabby? Yup as I wonder how many other people and what other nonsense is going to make me crazy today? It seems when the day starts off bad the rest of the day follows but I have hope. I haven't looked at my facebook yet and I am sure I will get uplifted there, I always do in one way or anther. It is my friends who give me strength to get through my hard times and the people who cause me grief are the ones I stay away from. I can't afford anymore negative then already comes my way. The pain and living with it is bad enough I can't waste precious energy on negative people or things that surround me. I will forget this morning. I will move on and make it a better day, pain and all. I will be thankful for the people who understand me but I sure wish the ones who didn't would at least try. #4 Try to understand someone not by your standards but by theirs.

God Bless!


Monday, August 19, 2013

It's All In The Way You Think

Believe it or not I survived Rich and Leah's wedding without drugs. I never would have thought it possible even a few months ago. Truthfully, I never would have believed even a year ago that I would stop any of my drugs but here I am almost drug less. Well, except for the ones I have to take for other issues. It feels so good to be free almost like an eagle tied to chains and then the chains have been broken and he is free to fly. I don't know how else to explain it.

The other side of the story isn't so freeing. The pain that has intensified. I knew for a while, I even prepared myself mentally, over the past few months to be ready for my left foot to give me issues the day of the wedding. I was fine with it. Mind over matter and I knew I would be okay. Whatever, I can always lay low the week after the wedding and baby my foot to at least get it back to it's normal state of pain and swelling. The one thing I didn't prepare for was that my right knee was going to start to give me issues. Can you even imagine being over weight and having intense pain in your left foot and even more intense pain in your right knee as it is clicking and clacking out of place with every foot step? Wow, talk about being an actress at a wedding, I was. It really wasn't that hard. I tried not to think of the pain and every time I felt the pain I would think of Richie and Leah and their happiness or about having all of our families all together for a whole day. This doesn't happen often so the happy thoughts and the love over ruled the pain. Walking normally with pain on both sides of your body is hard. You become the master of being fake and never allowing anyone to really know how bad it is, even those the closest to you. Well, at least until about nine thirtyish that night. Wham. I had to stop the acting. I quietly left the reception to retreat back to the room where we all got ready for the wedding. I pulled up to chairs, one for the big ole booty and one for the legs/feet. Ahhhhhh, let me tell you that never felt so good. As I sat there I didn't know what to do. By this time the pain was almost unbearable but I knew we only had a few hours left so getting some pressure off the legs for a bit helped. The sad part is I wasn't able to say goodbye to some of our friends and other people who were there. I hate that. The part where pain takes things away from my life and relationships. I hate when pain controls me and I have to give in. It is so heartbreaking, but I also know there is a time where I must give in and take care of me. It's hard when you are not a quitter but you must control your mind enough to tell yourself it really is okay.

The reception ended I was still in the room. We all went to a fire and had S'mores and it was so nice. We didn't last long down by the fire but I am thankful I was able to go. Rich and I helped everyone get back to their rooms safely and finally got to ours. By this time my ankles were like balloons and I seriously cannot remember being in so much pain in my life. I was awake until three am trying to help ease the pain. Creams, lotions, massaging, meds, pillows to prop myself up on and the list goes on. Finally, I'm not sure if the the pain got a little less intense, or if I was just getting use to it the way it was, but I finally feel asleep after a few hours. All in all I must say this was one of the best days of my life a day I will never forget. The pain? Forgotten, almost. The day, the love, the knowing Richie and Leah are so happy together? That can take any pain away! It's true you really can make it through anything if you just put your mind to it!

God Bless!