Difficult for you, or me?

A common theme that runs among chronic illness, whether the victim of it or their caretaker, is the disappearance of friends, family, spouses, significant others, and so forth. The most common reason, if one is given, seems to be that, "It's just so difficult for me to see you this way". Well now, doesn't that make sense.

Always an Addict

I recently switched doctors. Although my children and I shared the same doctor for over 8 years, it had become impossible to get appointments in a reasonable amount of time. This doctor knew everything about my family, and had literally been caring for my son since he was born. When she switched offices, we had followed her. Leaving her wasn't a decision taken lightly.

 I've been seeing my new doctor for over half a year now. My family was extremely pleased with her. I've been battling some pretty nasty health issues of late. On my last visit I was told they wanted to take a urine sample to see if there was another cause for my lower back pain. When they sent me an email update that the visit summary was available, I jumped over to see if the lab results were back. They weren't, but the lab summary stated, "urine today due to pain". Fast forward a couple of weeks when I log back into my account to see if the labs had posted yet, since my doctors office had not called with the results. Imagine my surprise when I saw that a full drug panel had been done on me! 

Due to my chronic pain issues, I do have a prescription of Hydrocodone 325/5mg. I am prescribed enough for 2 pills a day. Every single month I have meds left over. 

At each doctors visit I take my bottle with me. It's a habit I picked up in 2001 when I was first diagnosed and had only 4 years clean time. Since I have always filled out my doc profiles legit and checked the little box beside the question that asked about previous drug abuse, doctors worry about someone with only a few years clean that have health issues which cause chronic pain. I didn't mind....... back then! 

Now, I rarely even have a prescription for pain medication. Through the years, I managed to find alternate ways to manage my pain. I'm proud of that. Narcotic pain relief isn't really relief at all. It dulls the pain, bringing it back with a vengeance when the meds wear off. This typically results in the patient taking the medication every 4-6 hours to keep that rebound pain away. It's a nasty cycle. It's no wonder people become addicted to prescription medications so easily. But I know this! 

I've spent over a decade of my life working with addicts. I'm aware of how the medications work and why it is literally a physically painful process to come off of them once addicted. 

If I were going to abuse prescription medications, wouldn't I go to a pain clinic that takes one look at all my medical diagnosis and is ready to prescribe me anything I ask for? The same pain clinic's I've complained about for years because they don't want to manage your pain, but merely drug you enough so that you don't know who you are, much less feel pain? Why would I stick to a measly bottle of 60 5mg hydrocodone if I was looking to get high and abuse them? If I were abusing them, how could I have pills left over every month? 

This May I will celebrate 18 years clean time. 18 years of not abusing drugs, prescription medications or alcohol. 18 years is a big deal. I was 19 when I got clean. 18 years is almost half my life span. At 13 years old, I was prescribed an addictive medication. I despise that no one talked to me or my parents about the risk of addiction. I despise that, as a result, I lost the next 6 years of my life. I spent 6 years of my CHILDHOOD strung out. I've spent 36 years of my entire life CLEAN. Six years of MY life that was WASTED because a doctor felt it was more important to drug me then to deal with the effects of the abuse I was enduring. Six years of MY life that was WASTED because a doctor didn't care if I ended up addicted, as long as my parents kept bringing me back and paying the bill. I'm proud of the woman I've become. I lived through a kind of hell most people can not even imagine during the 6 years of my life that I wasn't clean. 

It wasn't easy getting clean. Getting clean meant I had to deal with my Post Traumatic Stress Disorder. Getting clean meant I had to feel emotions about incidents I just wanted to forget about. Getting clean is, to date, one of the most difficult things I ever did. As I've mentioned before, I wasn't even aware of what addiction was. Other addicts taught me about addiction. Told me what it meant, what their lives were like. Told me that I didn't want the life they had and I should get out while I was young. When I realized that I was addicted (I was 18 then), I started thinking deeply about what that meant. 6 months later I woke up one morning and declared, "I want to get clean". After the initial jokes of "take a shower" subsided, the same addicts who told me that I didn't want their life were the ones that sat by my bed as my body was wrecked for days. Yeah, getting clean was one of the worst experiences of my life. It ranks right up there with being gang raped. Getting clean is, most likely, the hardest thing any person will have to go through. It means making amends with those you've hurt. It means dealing with the hurt and pain you were trying to run away from. It means accepting responsibility for your actions. 

And apparently, to my current doctor, it means "Once an addict, always an addict".

Ironically enough, I accept the phrase "Once an addict, always an addict". I know to never take a prescription that can alter my senses if I am extremely sad, depressed, or feeling any type of negativity. I will lay in bed and suffer through my physical pain rather than take something that will also deaden the emotions I may be feeling. I know that, even though I never think about getting high anymore, that I easily could. I know that somewhere, hovering around the edges of my mind, is that girl that was so easily addicted and then kept with the addiction because it was better than dealing with the hell she was living with. The same girl who kept taking the meds even after she left her current hell, and told herself it was because of the hell she had run into. That girl is still somewhere deep inside of me. I hold all her memories, all her fears, all her reasons for running. I'm not that same girl, but I cling to the belief that she is still inside of me and could resurface. 

However, I know firsthand that having been an addict does not mean that you will never be able to remain clean I know that having been an addict doesn't mean that my pain can not be managed without abusing it. 

I know that if a doctor has concerns, they should DISCUSS THEM WITH ME, instead of being sneaky to get a drug test behind my back. I know that I deserve a doctor to be as honest and upfront with me as I've been with EVERY SINGLE ONE since the time I first got clean.

 I am angry. I am hurt. I even feel betrayed. I was told that my kidneys and bladder would be checked to attempt to determine if anything else was causing my pain besides the issue we knew of. Instead, they didn't check anything except to see if I was abusing drugs. I was lied to by my medical provider because they assumed that, since I readily admitted I had been an addict between the ages of 13 and 19, I must be an addict now.

 Guess my family will be searching for a new doctor. Honesty runs high on my list for a medical provider.

SC's Pain Scale

0. Pain is constant but at a level I can push through and accomplish tasks. Completely able to “fake” not being in pain in an effort to prevent people from treating me differently than they would a typical person.


1. Pain is constant and I'm still able to accomplish tasks, but I must take frequent breaks throughout the day. Still able to “fake” but usually make excuses when taking breaks such as, “I'm just tired” or “I just need to catch my breath”.


2. Pain is constant. I'm accomplishing tasks but am having to take breaks after each individual tasks, such as loading the dishwasher. My ability to “fake” is limited, and I tend to only visit with those that I know very well.


3. Pain is constant and is now inhibiting me from accomplishing most tasks. I have only a few spoons (refer to The Spoon Theory) and have to determine what my main priorities are. I try to make spending time with my children the priorities, but often necessities such as grocery shopping or work over ride. I can only “fake” for very short periods of time (5-10 minutes) but those that know me very well are able to determine my level of pain and start asking me what I need and how they can help (yes, this annoys me and I'm still learning how to accept help)


4. Unable to “fake” not being in pain. Laid up in bed. Muscles in esophagus, lungs, and throughout body are in painful spasms resulting in difficulty breathing, swallowing, walking. I'm giving my wheelchair and my walker the evil eye, realizing the love/hate relationship I have with them. I'm not leaving the house and if I do, I'm a curled up bumbling mess.


5. This stage is, simply put, “Why is it humane to put an animal out of it's misery when in pain, but not a human? The word humane has human in it for crying out loud!”

Hope

I had hoped the day before yesterday was a fluke.

I had hoped that, by some miracle, it wasn't going to happen again.

Summer had been so good to me.

Why couldn't it just last forever?

Yet, this morning I woke with that old familiar pain. The pain that causes you to scream out loud and moan when moving, despite your best efforts not to. The pain that makes you want to plead with someone to knock you unconscious. The pain that radiates through all parts of your body. The pain that feels stabbing, burning, piercing, throbbing, pounding, radiating all at once. The pain that makes you laugh at the sad faces on a scale of 1 to 10, knowing that the majority of people out there have no idea what pain like this is like. The pain doctors say "most people" would not be able to handle. The pain that doctors willingly, with no questions ask, want to prescribe Oxycontin and IV drugs for. The pain that I can't take prescriptions for because the side effects render me useless as a mother.

I do this every year. I feel so much better through the warm and hot months that I start to secretly, inwardly hope that I've gotten better. I know that the doctors have told me there is no cure. I know that the doctors have told me that it will only get worse. I know that the doctors have given me a death sentence.

Yet, I can't help but hope. Hope that somehow, someway, it will get better. Hope that I won't end up spending most of winter in bed. Hope that I can run and jump and hike and bike.

Then, when cooler weather hits, and I wake unable to get out of bed without help, the feeling of defeat starts flitting around the edges. The anger starts to rise. The reality of how complicated life is as a single parent that can't hold down a "real" job. The unjustness and unfairness of it all. The envy that comes with seeing capable people with healthy bodies. I want to scream to God that it isn't fair.

Yet, I know that life isn't about fair. It isn't. Life is what it is and the only part we can change is how we approach it and deal with it.

Problem is...... financial responsibilities don't stand by and wait till summer comes back with warm weather and the bodies ability to function.

I am feeling very defeated today. Very tired. And above all else........ in PAIN.

2nd Day in Bed

It is days like this that I wish I had someone to talk to that understands. Someone that realizes I have pushed and pushed my body far past what it could handle. Someone that understands I am taxed beyond all means and that just because I looked "OK" a few days ago, doesn't mean I really was. 

I want to be able to walk out the door, knowing that I can fall back on all the experience I have in the work force and get a job easily. I MISS a real, printed on paper paycheck every week. I MISS busting my tale at work and then coming home to being a single mother. I MISS having the bills paid every month and not having to worry about which ones are not getting paid. I MISS being able to care for my body on my own, showering, washing hair, etc. I MISS being able to keep my house clean and all the chores done. 

I MISS BEING NORMAL

I try so very hard to look forward and focus on what I can do. Yet, when I am stuck in bed......when I have to have help to make it into the bathroom.....when someone else has to make my plate and help clean up the mess when I drop my food all over me......these are the times I think about all that I used to be able to. The time when I was a single mother, working and going to college. When my house stayed so clean you could eat off my floors without fear of germs (OK, so I was/am OCD).

I have enrolled in college. The entire degree consists of online courses. Only one will be work intensive, with multiple assignments and labs due weekly. I spoke with the department head for over an hour. I didn't tell him about my health issues. I didn't tell him that I'm choosing this field because I need a job where I can work from home, in case I can't get out of bed. I didn't tell him that I'm choosing this field because I feel I can only work part-time, around my bodies needs, and I hope this field will pay enough that I can support my family with part time work. I didn't tell him that I am unsure how I'm going to manage college, health issues, and be a success. 

I hate being stuck in bed. Regardless of everyone telling me it does not constitute failure on my part, the time spent away from my children and the state of my home makes me feel otherwise. 

I won't give up. I'll keep putting one foot in front of the other, metaphorically of course. I'll keep believing that somehow it'll all work out. I'll keep striving to be able to find a way to support my children and have income to provide for their needs. 

Someone asked me how I could believe in God after  all I've been through. 

Truth is..... if I didn't believe in Him, I'd have ended it all long ago. 

My New Year's Accommodations

Well, I can honestly say that my New Year's did not go as I planned. I had planned to spend this New Years the same way I have spent the last 14...curled up in bed with my kiddoes, bed piled high with snacks, and watching the ball drop. We always talk about the events of the past year, and what we hope to accomplish in the upcoming year. We eat lots of junk food, cuddle and critique the bands that play.

However, this year, just as the ball was dropping....I was having an IV blow out! Yep, I was in the hospital. 

I'm not even going to go into the long story of how I ended up here, or why I'm still here. Let's just say I've been in massive pain since Wednesday and docs are still trying to get it worked out. The docs have made it very clear I'm not leaving until they get it all figured out and I'm no longer in pain. The pain started the last day of October, so frankly, I'm ready for it to go away as well.

One of my goals for this year is to try to look at things in a more positive perspective. So, I'm going to start today! I'm in the hospital, I'm in pain, and I could whine and complain alot right now. Instead, I'm going to look at the bright side! So, here goes.....

1: The constant nausea is a sure fire bet that I'm going to lose weight

2: I don't have to do any housework

3: I don't have to wash laundry since all I'm allowed to wear is a gown

4: I get to wear a stylish, comfortable, gown that shows any in the room my derriere. Wondering how this is a positive? Well, if I want to get rid of someone, I just crawl to of the bed! ;)  

5: I am now throughly educated on the best place to place an IV, where not to place an IV, and what an IV feels like just before it blows. 

6: Should I feel like it, I have access to cable television. 

7: I've been here so long the nutrition guy knows be my name and even knows how I like my tray being left!

8. I get these cute little leftover treats from the hospital holiday party.

9. It's legal for me to get "high" now.

10. I have people come check on me every little bit!

11. I don't have to shave!

OK, so obviously I'm really struggling with this whole optimistic looking at the bright side. I'm trying though. I have my laptop and  I also can watch Netflix which has an assortment of inspirational movies (watch The Encounter). The doctors are promising to make sure I am well before sending me home, unlike the hospital that released me Wednesday, which thus resulted in my passing out on my bathroom floor!

Most important, I have God. He's right here with me and He loves me. God is good, ALL THE TIME.

PS. This blog was written under the influence of legally administered prescription medications and under duress of extreme pain. Therefore, any and all statements are to be taken with that in consideration. That said.....next person that shows up to visit has to help me shower!

Who Has It Worse Than?

For two weeks I’ve been in intense, debilitating pain. A week ago I prayed and told God I’d reached my limit. I begin to pray before doing each and every thing, even attempting to toilet. Four days ago I started crying each night after the children were in bed. Three days ago my husband had to start helping me shower and dress. Two nights ago I became completely overwhelmed and discouraged as I looked around at all the housework that was piling up.

Last night, I asked my husband to hold me. As he snuggled next to me and draped his arm over my side, the pain almost knocked me over. Each breath I took felt as if someone was driving a knife into my lung. I thought if I slowed my breathing….if I took small breaths instead, that I could bear it. But, instead, as much as I wanted the safety, comfort and security I felt wrapped in his arms, I had to ask him to please stop. Silent tears soaked my pillow. Before the night was over, I ended up lying, once again, on the floor to sleep. Sleep though eludes me. Every thing hurts, even my eyeballs. I sleep only when I am overpowered by the exhaustion, and even then I wake often.

 I can not count the times I’ve had to tell Pookie that I couldn’t hold him, cuddle with him, or even let him hug my neck because the pain is to intense. The pantry is getting bare as I haven’t even been able to make my mind work enough to process a grocery list or meal plan. The laundry is piling up, the house getting messy, everything becoming disorganized and behind, despite my attempts to keep it from happening again.

This morning I had a family meeting with the children and explained that I have truly reached the end of my rope. There is hardly anything I can do now. Once again, my children are feeding me and helping me move around. My husband is bathing me and dressing me. I’m having to cancel plans and events because the pain is to much. Once again, I am trapped within my body…….a prisoner confined by pain and fatigue…..the jail my own body.

This morning my 5 year old saw a commercial on television of a child with cleft palate. He asked about it and after explaining, I also explained that the child doesn’t have the money to go to the doctor. His face lit up and he said, “We have money to go to doctors. Let’s give him the money so the doctor can fix him. When he’s all better, I’m going to hold him, and hug him, and play with him!”

Today I thought of a mother whose only been given months to live. I thought of my uncle whose been diagnosed with lung cancer. I thought of my mother who has battled chronic fatigue and other issues since I was a child. I thought of my best friend who died 14 years old from a misdiagnosed brain tumor. I looked at the picture on my mantle of a precious angel taken long before his time at the hands of an abuser. My heart is swollen with the love I feel for all those struggling in this world and I know that not only am I not alone, but that I don’t have it “the worst”.

What is “the worst” you might wonder? Is it the person who dies alone? Is it the person who dies leaving behind children? Is it the children left behind? Is it the parent unable to be a parent who instead have her children caring for her? I could go on and on, yet there is one thing I have learned over and over again. There is only one group of people that really have it the “worst”.

That group is the people who don’t have God to carry them through when all their strength and energy is drained. The people who don’t know that God loves them no matter what has happened in their life. The people who, when they have no human being there for them, they don’t know they can turn to God with their cares and sorrows.

Medical Professional? Where?

I've lost track of all the specialists I've seen since I was first diagnosed in 2003. I've seen several rheumatologists, pain specialists, neurologists, cardiologist, the list goes on and on. They have all done one thing in common ....... contradicted each other. 

I can not begin to describe my frustration. Supposedly, at present, rheumatologists are the "go to" specialists for Fibromyalgia and Connective Tissue Diseases (Lupus, Rheumatoid Arthritis, etc). Yet, it seems that these specailists are at a loss. Some still feel that it's an imagined disease. Others feel that strong narcotics and muscle relaxers are the only key since it's impossible to improve quality of life. Some feel that narcotics and muscle relaxers should not be used, but rather the pain should be dealt with and used as a sign of what you should and should not do. Some believe that there are a myriad of symptoms that falls under these diseases and that they often overlap in symptoms. Others believe that there is a strict criteria of symptoms for each disease and that symptoms don't overlap. 

I have been told that my symptoms are caused by Fibromyalgia and Mixed Connective Tissue Disease. I've been told that I don't have either, and that there is something else causing the symptoms (though that doc wasn't sure what it was causing it). I've been told that I should work through the pain and that I should stop when I feel pain. I've been told that my symptoms aren't caused by either Fibro or MCTD and that I should go see a particular specialists, only to have that specialist tell me it is the Fibro and MCTD. I could go on and on. 

Now, I'm just tired and frustrated. It appears that, although diagnosed with Fibromyalgia, MCTD, and Reynaud's Phenomena.....the only one that can be successfully treated is the latter. I've been told that I'm a difficult patient and won't have any relief because I refused to the prescriptions of Oxycontin offered me. This was after I made sure the physician had duly noted my previous drug addictions as a teen. I've been told that narcotics offer no real relief to the pain and worsen the fatigue. 

I've had medications that successfully help manage my pain without affecting me mentally suddenly no longer be covered by insurance. I've had medications that would help not be covered by insurance because the FDA had not explicitly approved it for my specific use. I've been unable to get certain medical care that has been proven to help because it's considered "alternative". I've been denied medical coverage o quoted rates that were so astronomical that I'd never be able to afford it. I've had to wait over 6 months on a waiting list to get in to see a doctor. 

I've had to argue with some doctors to prescribe me certain medications that I've used before because they didn't think it would work. I've had to argue with doctors that if I'm only asking for 30 Hydrocodone's every 3 months, there is no way I'm abusing them! I've been told that if I refused the pain clinic's prescriptions (the oxycontins) then there was no point in being given prescriptions for medications not as strong. 

Why am I harping on this now? Well, I recently had a doctor's appointment. It was my second visit with this particular doctor and I'd hoped that this would be a doctor that valued the whole body approach (do these doctors exist anymore). Tired of having several different specialists who all contradict each other, I want one doctor who can assist me in finding a combination of both medicinal and non-medicinal ways to improve my quality of life. Yet this specialists literally.......yes literally.....shrugged her shoulders and told me she didn't know what to tell me. She then named out some other specialists I might could see, telling me that she knew some of my symptoms could not be caused by MCTD or Fibromyalgia. This after years of being told by other doctors that the symptoms were a direct result of these diseases. 

I've heard very good things about a handful of doctors in relation to MCTD and Fibro. Yet, none of them accept insurance, none of them are nearby, and they all want astronomical fees. 

I can't help but wonder...............what exactly is going on with the medical field these days? How can several different physicians tell me opposite things and declare them to be truths? How can medications shown to help people not be covered by insurance but medications with a lower success rate be covered? Why is it that specialists won't work together as a team, but rather feel there is some sort of competition between them? 

I long for a time when your physician knew you by name. The time when they knew your family and asked specifically about them when you came in. The time when your doctor could discuss with you all your symptoms, and various solutions as to how to treat them. A time when your doctor actually researched any symptoms they weren't familiar with and found out information about what might help. 

I'm fortunate that my children got to experience this type of care when they were first born. Their pediatricians and doctors have all either retired or moved to another practice. I've been searching for a doctor that can offer me that type of care, and am continually discouraged not to find it. 

I'm not alone in this. Many people find that they receive more information about what will help them from support groups and message boards then from specialists and physicians. More and more people are turning to online pharmacies or even moving to states where medicinal marijuana is legal. Many people have quit seeing physicians completely and turned their back on the medical field that seems to only make things worse. 

Although I feel that the health reform has a lot of good suggestions, I feel that there needs to be a focus on quality healthcare and not just quantity. I have health insurance but prior to the Clinton Administration was one who would never have qualified due to pre-existing conditions. Even now, if not for the year I spent with state funded health care, I wouldn't have the paid health insurance I have now through my husband's employer. But, if I didn't have health insurance, would I want to pay for the medical treatment that I receive now? I'm not saying that focus shouldn't be put on helping those without insurance to obtain it..............but if everyone is going to be forced to obtain insurance, then shouldn't the medical care at least be of a greater standard?

I Did It Again

After weeks of battling disabling pain, fatigue, headaches, nausea and more, I had started to feel better. My husband and I spent two nights away at a cottage where I slept the majority of the time. Feeling more refreshed then the preceding weeks, I decided to follow up the mini-vacation with a trip to Biltmore Estates. Overall, I accomplished more in one day then I'd been able to do in months. I alternated between my hip locking on me, and the pain in my head causing me to take many more breaks then I expected. I spent the majority of the time sprawled out in the grass on the estate as my five year old ran, flipped, and climbed walls (literally). When we stopped for dinner on the way home, I told my husband that I was in immense pain, but that it felt good to know the pain was a result of having done something. I told him that if I was going to hurt, I'd rather it be from accomplishing something rather then from laying around in bed. 

The next morning I woke determined to push myself harder then ever before. If I could hang with Biltmore, then I could at least catch up on some housework and start packing for our upcoming move. I tackled the kitchen. I pushed through the pain, the fatigue and the headache. I swept behind appliances, boxed up items to give away, and bleached everything that could be bleached. I even managed to drive a short distance down the road (although the pain almost prevented me from making it back home). 

I went to sleep last night thinking of how much I could get accomplished this week if I kept up at the same pace. I thought about how I'd always let the fatigue and pain stop me, but this time would be different. I allowed myself to dream of all the fun things I'd be able to do with the children with my new found strength and vigor. Dreams of hiking trips, fishing adventures, and field trips filled my mind as I feel into the embraces of sleep. 

Then, today came. I woke with a fatigue so severe I couldn't get out of bed. After a few more hours of sleep, I managed to make it to the couch where I gave the older two children their daily chore and schoolwork assignments. I checked a couple emails and messages, and went back to the couch. The fatigue and pain today has been unbearable. At noon I went to lie down with my youngest  during his nap/rest time. I slept for two hours only to wake feeling more fatigued and in pain then when I first laid down. I dragged myself to the couch and gazed upon the chores that I had dreamed of accomplishing today. I begin to berate myself for once again having gotten my hopes up. 

Don't I know that each time I dream of accomplishing "normal" things, I am deeply disappointed? Haven't I learned yet that the unbearable pain and fatigue always come back and stop me? How did I not know that if I "over-did" it, I'd pay for it? Why did I think this time would be different? 

Rather then sit and bemoan my misfortune, I decided to blog. To get it all out in print and release the despair I feel at this moment. 

I had a   physician tell me long ago that I was living in denial. That I was not accepting the limitations of my physical body and that until I did, I would remain unhappy and unable to feel contentment. She told me that I needed to quit thinking about the things I had done and enjoyed before, and find the "new me". How ironic that the things she tells me I am refusing to accept, are the same types of things that I feel makes my child so unique and special. 

So, here I am today. Once again let down from having allowed myself to dream of a "normal" life. Yet, I find comfort in the fact that I don't have to completely accept the "new me". I know that God has promised to one day "wipe every tear from their eyes. There will be no more death or mourning or crying or pain." I think of the lyrics to one of my favorite songs where Chris Tomlin sings, "I will rise, when He calls my name, no more sorrow, no more pain." I know that God will strengthen me to accomplish His will today, no more and no less. I know that God "gives strength to the weary and increases the power to the weak......those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

While visiting the cottage on my husband's and my mini-vacation, I saw a quote in a book. It was a quote that I used to have posted in my bedroom as a child, in my locker at school, and in my cubicle at work. It merely stated, "Life is 10% how you make it, and 90% how you take it." 

My broken body today is out of my control. I can only do so much.....eating healthy, getting enough sleep, taking vitamins, stretching, etc.....the rest is out of my control. Yet, there is One who is in control and who provides me with all I need. I tend to lose sight of all God has given me and dwell on what it appears I have lost in my life. Yet, I have so much to be thankful and grateful for. God continues to bless me each and every day. Today I am even thankful that my pain and fatigue has caused me to stop and realign my thinking once more towards my heavenly Father.

Trees Outside My Window

Whew, where do I start? I’ve been offline for 2 weeks due to modem issues and a phone company that doesn’t know up from down. I logged on yesterday to find my inbox flooded with emails and my Facebook bombarded with everyone who worried about me when I disappeared from cyber world! You have no idea how wonderful it made me feel when I logged on to FB yesterday and almost immediately someone asked me, “Have you updated your blog yet?”. Wow! Someone missed my blog? That’s gotta be success!

So, what has everyone missed? Well, I’m getting married in less then 3 weeks. We don’t have the rings, the flowers, a reception planned, or a honeymoon location. We might not even get to take a honeymoon unless we take the children with us since our youngest hasn’t been doing too well. He’s having almost daily meltdowns, sometimes several a day. I just can’t see leaving him for several days while this is going on. So, looks like our honeymoon will instead be a family vacation.

I just put the youngest down for a nap. We laid down on the couch together. Our couch sits in front of  the window. So, when lying down you can face the back of the couch and see the trees and sky above it. It looked like this.

I was watching the trees and how they swayed. Although there is no wind to be seen at ground level, the tops of the trees were ever so slightly swaying in the wind. It amazed me that they could sway like that without toppling over. Each tree is a different size. Some are skinnier, some thicker. Some are taller, some shorter. They brave wind, rain, and ice at times (not much snow in these parts but occasionally). They stand tall, bending under the weight of whatever nature tosses at them. Yet, they still keep themselves firmly bedded in the ground. Sure, sometimes trees fall and they tend to come up from the roots. But, I’m thinking those are the trees that have taken years and years of abuse and let it get to them. I mean, one storm won’t uproot a tree. But, if that tree has had its roots slowly rotted away from sitting in to much water, or has had termites infest it, or had disease touch it……after years and years this tree will fall. Of course, maybe that tree is in someone’s yard and they love it. Maybe that tree holds the children’s tree house. For whatever reason, maybe someone took the time to care for it. They brought in soil to replace what had been eroded away. They treated the infestation of termites or treated the disease the tree had gotten. Through the years they tended to and cared for this tree so that when the storm came, its’ roots were still firmly embedded.

I think that those of use who battle chronic pain and health issues are like those trees. Each day life erodes a part of us away. We keep standing tall though, bending under the weight some days, but springing back up when that weight lifts a bit. Yet, day by day, year by year, life erodes us away. Suddenly one day we look down and realize that the next storm that comes by is going to knock us completely over!

It’s so important that we surround ourselves with others who care enough to provide the attention to us that we need. We need, more so then many others, someone to bring us soil when ours has eroded away. We need, more so then many others, someone to help us treat the diseases that wreck us. We need, more so then many others, someone to help us get rid of those pesty negative thoughts that run through our head. We need to know that when the storm comes, we’re firmly embedded in the love of our friends, family and God.

Unfortunately, many of us suffering with chronic ills find it hard to trust. So many times we’ve had friends disappear because they “couldn’t handle” seeing us ill. Or, we had friends disappear because we could no longer actively participate in their lives the way we once did. We’ve had loved ones look at us in disbelief and with no understanding. Everyone suffering with chronic ills knows “the look”. It’s the look that someone gives when their not understanding has turned to exasperation and they are done with us. It’s the look that someone gives us when, since they don’t understand, they feel we must be faking or that it’s all in our heads. It’s the look that erodes the soil that we are embedded in.

Yet, God knows exactly what we need. If there is someone eroding your soil, then God is going to make sure that there is someone else putting even more back. It’s up to us to allow that person to do so. Sure, it makes us vulnerable. I mean, it’s hard to open up and allow someone to help when so many others treated us so negatively after we became ill. But, if we don’t let God help us through the people He has here on earth, then we’ll be like that tree that falls when the big storm comes.

Fellow fibromites, let others into your life. Let others replace the soil that has been eroded. Let others treat the disease and help rid of us the pesty negative thoughts. Let others step into our lives and carry us at times if need be.

Fellow fibromites, let us be the trees that stay standing after the big storm!

To each of you who take on the hard task of carrying the soil to us….To each of you who take on the hard task of helping treat the disease….To each of you who take on the hard task of helping rid us of those pesty negative thoughts……Know that you are truly sent by God and we are grateful.

I QUIT

Most of the time, you'll come to my blog and find, what I hope, is a small ray of sunshine. You might find information about fibro you didn't know thru useful links. You might find that there is someone else who knows exactly what you go thru and how it feels. Hopefully, you walk away comforted. This is one of the many ways I've come to learn to deal with my diseases.

Then, there will be days like today. Days when you come to my blog and I will tell you how I feel at this particular time. I day when I can't help but think, even if I know deep down it isn't true, that no one else knows the depths of despair that I feel at times.

This isn't an easy blog for me to post. It isn't the type of blog I ever thought I would post. But, if I've learned anything at all from my new fibromites and my new church family, it's that letting things out can be beneficial, comforting and healing. Yet, there's that part of me that's screaming..... "Whoa Whoa Whoa! What are you doing? Are you crazy? You know not to let people see this part of you. You know this makes you V U N E R A B L E !!!"

Yet, I started this blog with the intent to give people, both fibromites and those who know a fibromite, a realistic view of what dealing with chronic pain, fatigue, and mental fogginess is like. I've visited blogs where the fibromite (or other chronic pain sufferer) always posts bright cheerful posts, day after day, and never appear to have a bad day. They never lose hope, never get frustrated, and appear to be the "perfect" chronic pain sufferer. Well, I'm not buying that for one single minute.

So, what kind of day am I having? Well, I'm typing this from my electric wheelchair. Yeah, sure I'm grateful that at least I'm not confined to the bed. I'm grateful I have a home large enough now to maneuver the stupid clunk of metal and batteries. I'm grateful I can get around. Yet, I hate Hate HATE this stupid chair. I mean, it screams at me with this loud huge voice, "Ha ha, gotcha again!" I pass the mirror and feel like breaking it just so as not to see my broken body is this God forsaken chair. I feel like just screaming at the top of my lungs, but don't because I know that'll result in knotted muscles thru my jaws, neck, shoulders and send my pain level thru the roof and shooting into the farthest reaches of the universe.

My legs went on vacation. They'd been hurting for three days. Then, day before yesterday, from the knee down, they went on vacation. Suddenly instead of legs, I had two very large cooked spaghetti noodles. It wasn't like when your hand falls asleep and it feels heavy. Nope, my lower legs felt light as everything. I can't tell you the disgust I felt at moving them around and watching them flop around lifelessly. You can only imagine ........ well, actually if you haven't dealt with this, you can't imagine what it's like trying to sleep when you can't move your lower legs. But then again you probably don't know what it's like to wonder if you really hurt anything when you ran over your foot (that you can't move and can't feel at all) with your manual wheelchair. You know, the manual wheelchair you had your fiancée push you in because you were worried going to get the electric one would wake the 3 year old. The chair that you had to be pushed up to the toilet in and then had to have help getting on and off the toilet. Yeah, the chair that usually lets you know your going to feel humiliated and embarrassed at some point during the day.

My legs felt better yesterday when I woke. Better then they had in days actually. AND they were working better then they had in weeks! I knew to take it easy though and I thought I did. Apparently though, joining my fiancée and his mother for lunch (his birthday dinner) was too much because after only a couple minutes of standing thru the church's initial worship service, I felt my legs start to go out. I tried to "fake it" leaning against my fiancée and the row of chairs in front of me, but then suddenly he was holding me up completely and keeping me from falling to the floor. So, I sat down. I know that no one at my church looks down on me for having to take a seat during the worship service, but at the same time it was a blaring neon sign above my head flashing "ha ha ha fibro strikes again".

If you don't realize it yet, fibro is the biggest monster to have ever attacked me. That’s not a little thing. I’ve lost my virginity to rape. I faced beatings and rapes daily at the hands of the man who’d promised to cherish and honor me. I ran for my life down the road in the middle of the night carrying a 3 year old son and 3-month-old daughter. We survived, barely, and spent 3 months in battered women’s shelters before getting a place. I sat in the next room as my dear friend, unbeknownst to me, decided the hate from his own mother was enough reason for him to take his own life. I attended the funeral of my best friends little boy, who was brutally beaten, starved and abused by his step-mother before she finally gave the life ending blow. I have seen some of the darkest, vilest, most horrible things this world has to offer and I walked thru. Yet, even thru all this, fibro is by far the hardest, meanest, cruelest, most evil monster I have ever had to face. And on days like this I am sick and tired of this monster.

Where was I? Oh yeah, my legs (if you can call them that today). I left church last night in a wheelchair. Not my own because …..well, just because. When I got home my wheelchair was brought form the house so I could get inside. I didn’t sleep well last night. Kind of hard to do when you’ve got these dead weights attached to your body and have to reach down to move them by hand each time you want to reposition yourself. 

Today I woke and it all just hit. Due to the stress that has been inflicted upon me the last few months from others, my fibro has flared beyond belief. I’ve been toughing it out thru it, no choice really, and just kept moving forward. I’ve known that it was only a matter of time before parts of my body went on vacation. This has happened before and it was always when I was over stressed and pushed for to hard for to long. I just kept thinking….if I can just get thru “this”, then I’ll take a break. But then “this” would be done and “they” would create more trouble, resulting in another “this” to get taken care of. This has gone on since January! My body, instead of rebuilding and relaxing during the summer, instead of recouping from the pain and grossly limited mobility the winter inflicts had to deal with heaps and heaps of stress instead. This all has resulted in me being where I am now. Stuck in this stupid chair with parts of my body shutting down. And, I still have to go to court tomorrow, more stress. I KNOW it’ll get dismissed like the rest, but the preparation, time and energy put into preparing for the case has taken away so much of my life. I think all my spoons (refer to The Spoon Theory in right tab) are gone for the next 3 months!!! I’m so very tired.

Fibro is a monster that steps into your life and then takes you life. This monster takes everything from you. It takes your physical body and mangles it so that you are left with a husk that can only register pain, and does so in a totally whacked out pain. I have days where my children can not TOUCH me, much less hug or kiss me, because I can’t handle the pain. Today, my fingers feel like someone is cutting a gash against the top of each one as it strikes the corresponding key on the keyboard. The ceiling fan can’t be on today because the “comforting breeze” is actually razors scraping off my skin. I’ll probably be stuck in the same clothes I’m wearing today for the next few days cause their my frumpy fibro clothes I have to wear when my skin can’t tolerate anything else.

I’m dreading being stuck in the house. Since I can’t hold my head up very well, without enormous pain, I can’t use my manual chair. And with no way to transport my electric chair, it means I’ll be stuck at home for weeks. I don’t know how I’ll survive court tomorrow. I’m going to ask the bailiff to please hear our case first because after 30 minutes in my manual chair, I’ll be in to much pain to effectively present anything.

I guess it all boils down really to being tired. Tired of every little thing taking my energy. Tired of not being able to be the mother I want to be. Tired of having to have a messy house thru the cooler months. Tired of being cooped up inside. Tired of knowing this stupid monster is gonna reach up and grab hold of me at some point in time, no matter what I do.

Will I quit? No, I have three very very very important reasons to go on. I carried each of those reasons within my body for 9 months before I was able to meet them face to face. They’ve changed my life in a way that is indescribable and saved my life more times then I can count. I’ll keep waking up (since getting up may be out of the question) and show them a smile when I tell them I love them. They’ll remind me that even though sometimes they get mad that I’m sick and take it out on me, that they know it isn’t my fault and that they love me no matter what. I’ll look at their beautiful faces and know that they were, and always will be, God’s greatest gift to me.

So, yes, I’ll keep going. I’ll ask God to please let the feelings I have today to pass quickly. I prefer to be the one offering cheerfulness to others, the one that supports others, the one that holds it all together. I don’t like being the one in need. As yet, I haven’t reached the point where I have total acceptance of my diseases and the full limitations they inflict on me. I don’t think that’s a bad thing either. I remember when a psychologist with fibromyaligia told me, years ago, that my stating I would walk again was my living in a denial and I’d never be a complete person without accepting those limitations. Well, I didn’t accept them and after 2 years bedridden, I did walk again! You see, God knows exactly what my limitations are. He also knows exactly how he can use me for His will despite those limitations. My limitations change day to day. Today, I’m grossly and even, in my mind, disgustingly limited. But tomorrow is another day.

I want to take a moment to thank my beautiful children. You alone make each day worth living and I hope that you always know that. I know that sometimes, despite my best intentions, the pain of fibro pushes thru in the form of fangs, claws, pointed tail and pitchfork and I’m so sorry that you ever have to see me that way. Yet, you have been troopers. You’ve faced your own health issues and mine with a courage that I’ve never seen before. I not only love you guys, you are such a deep part of me that I know I was never whole before you each came into my life.

I also want to thank my fiancée. He opened his home to us when we had no where else to go. He had never made fun of my health issues, never told me he thought they were “all in my head” or “fake”, never encouraged me to “try harder”. He and I have our differences, and sometimes I wonder how I ended up with him as he does me, but life was so much more hard and lonely before he came along. Thank you my dear for all you’ve done.

I want to thank my fellow church members who have kept me in their prayers of late. I have the joy of seeing such wonderful scriptures posted on their various profiles and it seems they appear just as I need them. Also, I was supported today with their post of the following scripture.

“"I can do ALL things, through CHRIST, who strengthens me" Phillipians 4:13”

And last, but no where near least, I want to thank my new fibromite friends. This morning, I didn’t think I could make it thru the day. But they have left me the most amazing messages today. They have pulled together to catch me as I was falling and they are ever so gently lifting me up. I want to end this blog today with the beautiful messages they left me today. Because, without them, you wouldn’t have had the opportunity to read all this.

“Also, nobody expects or should expect everyone to be happy as a clam all the time. You are more than welcome to boohoo all you want.”

“I agree some days its just too much. You may feel like that”

“I am so sorry you are having a rough go at it today. You will be in my thoughts and prayers today. Please post later to let us know how you are doing. Hang in there. :-)”

“a good boohoo may not be just what the doctor ordered, but it sure helps us once in a while - so you go on ahead and let that boohoo out….! I'm really glad to see the words "want to quit" rather than "going to quit" - please, please, please keep it that way!”

“hang in there ….., hoping your day gets better.”

“Vent! Let it out! Get it off your chest! You can't be happy and upbeat all of the time-none of us can. We care about you and know what you're going through and are hear to listen anytime you need us. Please come here and know you are supported and loved……. just please don't try to hold it in. We are here to listen and help God hold you up when the going gets tough.”

“I hope you feel better, You are always here for the rest of us. We all get down, but remember we all care about you.”

“How can u be sad? You have wonderful kids, a loving husband to be, fb friends and your church. What you do not have time to be sad!!! I want you to look in mirror and smile no no Smile smile like you are 8 and just getting a new front tooth! Now isn't that better? :0)”

“always remember that you are a strong, inspiration to all of us that are suffering with you. You're blog and your comments are so meaningful to all of us. I will pray for peace for you today.”

“We are here for you Melissa rather its gloom and doom or uplifting. Rest today and gather your strength for tomorrow. I am still praying for you. Gentle hugs”

“don't give up sweetie pie, you are not alone! you have us. u must rest today and look hard for that beauty, you will find it, it is there! i promise. you have inspired me so much. just let this day be a grieving day and a bad day. it is ok to have a bad day and be down. we are here for you xo”

How Chronic Illness Changed Me

  --> -->Before you start to read this blog, please know that you can click on the words that are colored blue to be taken to website that will give an explanation of the word. Thank you for your time in reading today's blog. Thank you to my family and friends for inspiring me to make my writings public and thank you to my online fibromite family for giving me the support and understanding I've lacked all these years!

I was on top of the world. I was working a fabulous job that I loved with great money and great benefits. I had two perfect well-behaved children. I was moving to the state I loved. I was going after the "American Dream". I would have my own home, a nice car, and my children would never have to wear hand me down clothing again. Nothing and no one was going to stand in my way. Or so I thought. 

I woke the morning before I was to rent my U-haul and couldn't move my legs. I thought I'd had a stroke. I was terrified. Within a week's time, I was in so much pain I thought of banging my head into the wall to knock myself unconscious. The only thing that stopped me was I feared I wouldn't succeed and would only hurt worse (although I wasn't sure that was possible). 

I remember lying in bed as still as I could because every movement was like razors carving up my skin and as if knives were slashing thru my innards. I couldn't stand it when the air/heat cut on cause the air currents moving across my skin were agonizing. I had to force myself to chew food since doing so created driving pain in my jaw. I had never experienced such pain. Me, who had stood proud after giving birth to a 9 pound, 4 ounce, and 21 inch long child with no medication at all........couldn't handle this. My children had to aide me to the bathroom and fend for themselves at the young ages of 5 and 2 years of age. 

So begin my trip to a specialist. A rheumatologist. I thought he'd be my savior. He supposedly knew all about the Rheumatic disease that it was suspected I had. I ended up being diagnosed with Mixed Connective Tissue Disease (exhibiting signs of Lupus and Polymyositis), Reynaud's Phenomena, and Fibromyalgia. I was overwhelmed, scared, terrified. I was so glad that I had a doctor who was able to diagnosis me, and who could give me the help I needed. 

During the period I saw this doctor, I listened to him wholeheartedly. I was devastated when he told me I would never get better then I was then, that I would stay on medications my entire life and that I would always require care (such as the nurse that then came to my home each day to bathe me, feed me, and help with my medications). When the doctor prescribed me a new medication, or upped my dosage, since I was getting worse and not better, I obediently took my medicine. After all, isn't that what we are supposed to do? 

By the time I quit seeing this doctor, I was on 21 prescriptions. My 5 foot 7 inch frame had dropped to 89 pounds. My toenails and fingernails had fallen off, my head had numerous bald spots, and the inside of my mouth was raw and painful. I couldn't move, couldn't eat, and honestly believed I was going to die soon. My children cried often due to my deteriorated health and their own fears concerning my illness. 

I left that doctor and his over prescribing ways and settled for a local home doctor who didn't believe I needed to be dosed to the gills! After a year, I was able to pull myself out of my wheelchair and stand with assistance. I remember the first time I walked with help! I remember the first time I made it halfway around the block (with assistance but still walking). I was carried home the rest of the way....but I HAD WALKED!! With each step I took I thought to myself, "Hmpf Doctor......I'll show you". 

I ended up marrying (a mistake but another blog for another time) and got pregnant with my third child. Suddenly, it seemed I was CURED! I felt it as early as my second week pregnant. I was ecstatic. Although my marriage was falling apart, and we were losing our home....I could move, walk, hike even! I took the kids and spent 3 months on the Appalachian Trail with them. It, to date, was the best time of my life! When cold weather came my body started to ache again. I moved temporarily in with my parents and the rest of the pregnancy was painful to every part of me....some parts I didn't even know could hurt! 

I've never gotten back to that wonderful feeling I had when I was pregnant. I've since had a hysterectomy so I won't get it back again in that way. I did stay in remission from the Mixed Connective Tissue Disease that I had and to date, it hasn't come back! 

I'm no longer chasing the American Dream. I'd like to own my own land, and will do so, but it's no longer a motivating factor in my life. I've had to change my perspective in life. I've had to learn how to, each and every day, find the beauty in the world. Often it's the smile of one of my children, or their hug when it doesn't hurt too much. Sometimes it's a butterfly floating past the window, or the leaves as they fall from the trees. Many times it's something I never saw as beautiful before, like the way a millipede moves it's legs when it moves. 

I've had to learn to live with things that before I would have never lived with. Sometimes it's dirty dishes in the sink overnight cause I can't bend over to load them into the dishwasher. Or maybe it's having to wear super soft clothing with little to no seams when I go out, even though I think I look froopy. It could be the kids having to eat cold cereal for breakfast or canned ravioli for dinner. I used to beat myself up over these things....but in the long run, is that what anyone will remember? 

I've learned to laugh at all kinds of things. I've learned to joke around about the things I can no longer, or rarely do. I laugh when crazy things come out of my mouth because Fibromyalgia affects your brain. I joke with the kids when I'm limping around and they lovingly refer to me as "Mama Gimp". And sometimes I laugh for absolutely no reason at all! 

I also cheer the small victories. Shaving my leg, cooking a meal, remembering to call someone, making it through the grocery store, even being able to make the grocery list. These are the small things that I celebrate. Recently I started a new medication and was able to do math. Now, that may not seem like a big deal until you look at my history. Prior to Fibromyalgia, schooling was no problem. I was the straight A, 4.0 GPA student. After Fibro, simply math stumped me. Suddenly, with the new medication, I could do math again! When I told my children and showed them, their faces lit up and they hugged me. We cheered and celebrated all day, much to others people's amazement! Hey, when life gives you lemons.......make lemonade! 

I've learned never to judge a book by its cover. I remember one day at a supermarket being outraged that I'd just seen someone pull into a handicapped parking spot and then walk in as if nothing was wrong with him. I figured it was their grandparent's parking decal. I was livid! Yet, now I'm often the person parking in the spot and walking in as if nothing is wrong. Granted, I can make it in, but after getting what I need, I most likely won't make it out so well, or even without help. I remember looking at people who wore baggy sweats, hair undone, and overall looking frumpy and shaking my head. I mean, couldn't the at least take the time to dress? Now, I'm the one wearing frumpy clothes since my skin won't tolerate anything else. I'm the one with messy hair since I couldn't lift my arms to reach behind my head to brush it. Yeah, I don't judge people by what I see anymore. 

I've learned that playing a board game with your kids means more to them then wearing new clothing. I've learned that cooking a meal and being able to feed my loved ones brings me much more satisfaction then driving a new car. I've learned that the "American Dream" wasn't my dream after all. 

Fibromyalgia has changed me. It's made me see life for what it truly is. It's made me appreciate those I love and those who love me even more. Would I take my life before Fibro if it were offered to me again? Would I choose to live pain free if it meant going back to who I was before Fibro? Sometimes I get depressed and feel overwhelmed. Sometimes I long and cry for a day with no pain. Sometimes I complain. Would I choose to live pain free if it meant going back to who I was before Fibro? Nah..... I don't think so. Fibro, in a way, saved me!

I Got To Shave My Legs !!!!

I've mentioned previously that with fibro, you have to find beauty in different places then before. Often, that beauty is found for you. 

Shaving my legs is a big deal for me. I have to carefully weigh the pros and cons of doing so. Will it require so much energy that afterward I won't be able to care for the children? Will it cause so much pain afterward that I won't be able to sleep? Do I have enough spoons left for the day to do so? (shaving legs takes about 3 spoons) 

Today I had a lot to consider. First, my legs were starting to look a lot like a man's. Although I could care less, we do live in a society that dictates that most women shave their legs. Second, tonight is our financial class and I needed to be able to make it there. Third, I still have to dress, dry my hair, and prepare dinner. 

Today has been a good day though. The head pain that has been plaguing me on and off for the last few weeks is today, just a nagging pain. I was able to stretch out alot of the knots I woke with this morning and figured a long period of time in a hot shower would work out the rest. Dinner is going to be easy tonight as it's BarBQ Chicken, baked potatoes, and corn on the cob. Once my roommate gets home, he'll take over making sure the children are ready to go and all I will need to handle is getting myself out the door. Overall, it seemed like a good day to do it. 

*sigh......as I type the bottom finally let out and it's now pouring rain. Rain and I disagree. Cold and I disagree. Put them both together and we practically hate each other. We'll see how it goes. I'm off to start dinner. I usually try to start it 3 hours before it's time to eat since I now have to take so many breaks in between and it takes twice as long to do certain tasks. 

But you know....even if the rain gets me down, even if I miss the class tonight, even if I end up to exhausted or in to much pain to do anything...............

MY LEGS ARE CLEAN SHAVEN!!!! WHOO HOO!!! 

Changes

Today started as every day does with me. I open my eyes and am instantly bombarded with the pain throughout my body. Then, I feel exactly how exhausted I am from the lack of sleep I've gotten through the night. I feel a sense of dread knowing that as soon as I move, a thousand, brilliant flashes of pain will flash through parts of my body I never even noticed I had before I got "sick".

Yet, once again, the demands of motherhood necessitate that I do what seems to be the impossible. One of my children come to help work out the knots that have formed thru the night. It's ironic in a way, if I didn't have them, I'd probably give up and stay in bed. But, since I do have them, they help me every morning reach the goal of getting out of bed.

After the children work on me a bit, it is time for me to drag myself out of bed. I must forcefully straighten my body as I walk to the bathroom, thinking to myself that I should probably use my wheelchair to conserve strength. But, I stubborn. I have to at least make it to the bathroom with some semblance of self before I'll start my day.

My day consists of nothing compared to my life before illness and chronic pain. Yet, I've learned to fill the voids that existed when my former life was taken from me. My days now consists of checking the kids schoolwork, planning dinner according to how much pain and energy I'll have by then, checking my emails, and now this....letting others in to know my daily battles.

Dinner is always tricky. I have to plan it first thing in the morning. I usually have a good idea then of what I'll be able to accomplish. I weigh out my to-do list, figure out how much energy and strength it'll take, then figure out how much is left for dinner. Our cabinets and fridge range in food from purely instant to practically gourmet. The latter doesn't happen in the cooler months, but sometimes during the summer I'm able to plan ahead to take a day to cook. It's one of my own indulgences that leaves me unable to do anything the following 2-3 days. Yet, some things are worth it and cooking a wonderful home cooked meal for my family is worth being out of commission for a few days.

The children's schoolwork doesn't always make sense to me. Hard to believe that I was a straight A student and now I struggle at times to figure out if the children did their work correctly. Often, while looking at their work, I have that nagging feeling that I know the answer....it's there somewhere.....lurking in the far depths of my mind where the fibro fog has covered it in layers.

If I'm having a good day, I'll manage to get a few loads of clothes folded. My oldest puts the clothes from the washing machine into the dryer. My middle child takes dry clothes from the dryer and puts them on the couch for me to fold. They both alternate helping me get the clothes sorted and into the washer to start the process. Although I often refer to The Spoon Theory to tell how my day is, I find that I tend to also weigh it according to laundry folded. Folding three loads of laundry is a really great day for me and probably means that dinner will not be completely instant!

Each day there is one thing that remains constant. That throughout all of it, I could not do anything without Him. He gives me the courage to go on when I feel I can't handle another thing. He gives me extra spoons when I need them (read The Spoon Theory to understand the significance of spoons). He soothes me when I cry, patiently listens when I am angry and yelling my wrath, and offers me comfort even when in my distress I disrespected him.

Remember "Footsteps in the Sand?" I read it as a child for the very first time. I purchased the address book I read it on and still to this day have possession of the outer cover of that address book. I look back over the scenes from my life, and can only rarely see a time when their were two sets of footsteps. God has carried me the majority of my life. What would I do without Him?

My desire now is to come to a place in my life where there are usually two sets of footsteps. A place where I am standing on my own two feet and with God's help can reach out to others and help them face the horrors I have in life. My illnesses knocked me off that goal for a while, but I've come to realize it is only one more pair of shoes I have worn. It opens the way for that many more people to be reached. I've walked in many shoes. Now it's time for me to find the pair that fits me and wear them from here on out. He'll be there for me through it all. I could never have made it without Him.

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalms 91:4