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.

Chronic Illness Relapse

I don't know where to begin. I have so many emotions running through me right now. I start to write, and then walk away, only to come back to it later. Then I erase everything and start all over again.

So, how about a brief outline of background info.

In 2001 I was diagnosed with Mixed Connective Tissue Disease (MCTD) which is basically a mixture of Lupus, Polymyositis and Systemic Sclerosis. I loyally did everything my medical team told me to which resulted in my spending almost two years bedridden with a wonderful nurse caring for me. I was a full time single mother of two young children.

At the end of 2002, I weighed 89 pounds, despite being 5 foot, 7 inches tall. I'd lost much of my hair, had mouth ulcers, and my finger and toe nails had fell out. I was so weak I couldn't even keep my arm on an arm rest and couldn't sit up in a chair without supports. I no longer walked, and had to have my arm strapped to my electric wheelchair to be able to use the joystick controller with my hand. I never went anywhere except doctor appointments as I was to miserable to leave my home. It was at this time that I decided I wanted to quit taking the medications I was prescribed, and that quality of life was more important to me than quantity of life.

Throughout the next 13 years, I learned that our bodies will increase it's capacity to handle pain as time goes on. We can build up a huge tolerance for pain, if only we allow it to happen. Pain medications inhibit this process, as does most of the medications we are prescribed. I also learned that swearing off all medications is like believing I really am Wonder Woman instead of just aspiring to be like her. I discovered The Spoon Theory and made it my new motto and learn to plan my day in spoons. During the best times my house stayed clean, and during the worst times I realized that spending time with my children was more important than all the laundry being clean or the dishes always being washed immediately. Simply put, I lived.

Now, here I am. July 2016.

A year ago my body begin an attack in earnest and it hasn't let up. At present it has affected my intestines, my esophagus, and my lungs. I have an every growing crater across my lower back called morphea that is very painful deep within my body and feels as if there is a on going burning across my skin. My breathing has gotten so bad that I had to get a handicapped parking sticker, although my pigheadedness meant I refused to get a permanent one as I am still clinging to the belief that I will be better by the end of the year!

What all of this means ultimately is that I have to go back on medications that I haven't taken since I walked away from them at the end of 2002. Medications I reacted violently to and that never really seemed to help. Medications that I must take to slow and hopefully stop the morphea spreading and hopefully aide my breathing. Medications that may be able to give me a better quality of life than I currently have.

I want to look forward and not back. I want to stay focused on what all I can do, and what I want to do instead of complain and whine over what I can no longer do.

The key to contentment and happiness is perspective. I choose my perspective. It's up to me to decide to be happy.

This just means it's time to change my perspective. Nothing more. So here we go folks. A new journey, a new beginning.

And I'm gonna fight like hell. Cause that's what I do. ;)

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.

Chronic Illness & Dating

How exactly does dating with long term, chronic, invisible illnesses work? I figured that upon initially meeting someone, there would be no point in telling them about my health condition. We might not make it past 3 dates or ever see each other again, so what would it matter?

However, when does a person divulge information like that? How do you approach it? When does it become an issue that would be important to the other person?

I do unusually well during the summer months. This past winter, due to how warm the months were, has been my best winter yet. I didn't even have to dust off the wheelchair! I figure I could realistically date someone and not have to bring up my health issues until fall of this year.

Doesn't sound like me at all, does it? Me...who is always the one that speaks up for honesty and full disclosure. The one who is the first to say that by intentionally withholding information, a person is being dishonest. I'm the one who has no problem calling out others due to their giving half answers.

Yet, I fell prey to the very thing I abhor. I became dishonest by way of withholding information and only giving half answers. When asked why I didn't put the kids in public school and get a full time job, I spoke of my child's health issues and special needs as being the reason. That was honest and true, but I left out the fact that even if I did put them in public school, that it was highly unlikely my health would allow me to hold a full time job. I left out the part that to be protected by FMLA for time missed from work, I am required by law to reveal the health issues that I have. That by revealing these issues, I am left with no one willing to hire me. I left out the part that I have a fabulous full time job waiting on me, but that my health doesn't allow me to perform that job anymore. When asked why I didn't charge for all of the side jobs I do, I explained that I barter a lot. I didn't explain that most of what I had been seen doing recently was being done free because these were people who carried me through the winter. Even when asked about the dissolution of my marriage, I left out the strain that my having health issues had caused in our marriage (not excusing his actions by any means as we all know illegal drug use is not the way to deal with stress.....just making the point that chronic illness is difficult on a marriage).

There were so many other instances like this. Conversations we held that I didn't really say what I truly felt because that would lead to my having to explain why I felt that way. OR, I would say what I felt and thought, but it didn't make sense to the other person because they were never given the opportunity to see things from my perspective. Times where I was told that they thought I was holding back and not telling them something. Then, the times I would express that I did not understand what the other was trying to say, but because they did not understand my unique health issues and how it effects me mentally, they were not equipped to explain it to me in a way I would understand. We both walked away frustrated.

I feel....... hypocritical. How can I demand upfront honesty from each person I meet, yet give less in return?

At the same time, I long for what others have. I HATE the way people treat me different once they know. The look of pity that comes into their eyes. The way they start to offer to do everything for me, even when they've seen me do those things before. The way they no longer perceive me as a strong individual, but as a weak one instead. I HATE that. I want to be able to go out, have a good time, and there not be the thread of my illnesses running through each thing we do.

The people that I keep in my life on a close and personal basis, they are the ones who NEVER treat me different. They are the ones who see me the same after they found out, as they did before. They are the ones that have never once felt sorry for me. They are the same ones who will sit with me as I cry about how lonely life can be with chronic illnesses and that come together to help me make it through the cold winter months. Yet, despite that.....they never look at me any different. I have friends who, in the depths of winter, have had to help me dress and eat. They've had to brush my hair when I could not lift my arms. They've had to put my shoes on for me. They've had to take my children to appointments I couldn't drive them to. Yet, never once did they look at me with pity or as any less then the strong and independent woman that I am. These are my truest friends. These are the ones that will be by my side throughout life. (I love you Tabitha, Franny, Brandy, James and my family)

I would like to go on dates and men see me for who I really am. If I tell them in the very beginning, then they see my illness instead of me. If I wait till later, I have placed myself into a situation where I am no longer an honest person.

Where is the compromise? Is there even a compromise to be made? Even once you determine the “when” it should be divulged.....there is still the question of “how”. Maybe I should print out cards that have my name, number and a disclaimer that reads, “Dating is only allowed during warmer months” or “I go to Narnia in the winters” or maybe “Due to FibroFog and ChemoFog, I am due to completely lose my mind at any given time”. Or maybe I should just make a list of all the possible offensive things that I might do as a direct result of my health issues.

~ May ask you to repeat what you've just said....numerous times.

~ May stare at you with a blank look on my face and not understand anything you've said.

~ May substitute random words in a sentence that make no sense at all.

~ May have no recollection or memory of conversations we have had.

~ May have no recollection or memory of dates we've been on.

~ May get frustrated when I am trying my best to understand what you are saying, but it won't make sense to me.

~ May have difficulty following through on multi-step directions.

~ May lose everything, even when it is in the same spot I always put it

~ May become emotional when I have things to accomplish and am unable to do them.

~ May appear to neglect important things (such as cleaning house). In reality I am basing my day on how many spoons I have left (read The Spoon Theory available online)

~ May lose ability to spell, sometimes even the most basic of words.

I could go on and on. There are so many things that change when I have a flare coming on. The peak of the flare can be mild to bad. This one, I spent yesterday and the day before in bed. Today I've made it to the chair in my bedroom and am able to type. YAY! I actually think I might be able to shower today, though the legs are gonna have to stay hairy! ;-)

Overall, I have the best life anyone could ask for. I have incredible children and an amazing daugther that steps up to bat when I'm down and out. She has cared for her brothers, cleaned the house, cooked meals, and done all that I needed done the last few days. She has not whined once, nor complained. She has checked on me, brought me meds and applied pain patches. I have friends that have checked on me throughout the day via text. I have a friend that came at the very last minute to take me to the doc. She drove an amazingly long distance to get me there and did so at the very last minute (we had an hour to be there from the time I asked her to take me). I know that had my flare persisted through the week, that friends would offer to come cook or take the kids where they needed to go.

I have the best friends, a lovely home, and family (not necessarily blood) that would take a bullet for me if need be. I have benefited so much from these illnesses. The two years I spent in bed taught me a lot about what really matters in life. I learned to quit trying to live up to others' expectations of me. I learned that it really doesn't matter what others think. I learned that I didn't need the praise and commendation for a job well done I had craved and depended on before I got sick. I learned that there is such a thing as unconditional love and that my children show it to me even when I'm at my worse. I learned that doctors really don't know best. I learned that people who have no idea what you are going through will ALWAYS have an opinion about it, and it's best to just ignore it and walk on. I have learned that there is no room for drama in my life, and the easiest way to deal with it is to block it from your life at the first sign of it. I have learned that there are some people who can see past the illness and see who you really are, and those are the people you keep around. I've learned that there is great joy in giving and doing for others, and that is what life is about. I've learned that money doesn't matter, that insurance companies couldn't care less about what you need, and that the more material possessions you own....the more you have to clean!

Life is a learning adventure. I guess this is just part of it I have yet to learn about. As always, I'd love to hear feedback. I know that many of you who read this blog (so sorry I haven't posted much lately) have chronic illness or love someone that does. I'd love to hear your thoughts.

Remember, each morning when you wake, no matter how severe your pain, find that one beautiful thing. No matter how small or how great, find ONE beautiful thing. Cling to that as your happy thought. Mine today are the memories of the wind blowing through the leaves yesterday. Each time I woke, that is the first thing I saw from my windows. It'll be my happy thought today! ;-)  

My Year Without Sex

First let me say, I am almost convinced that this blog post will get more viewers then any of my other recent blog post simply because it has the word "sex" in the title. Come on, you know it caught your attention also.

Now, let me explain. "My Year Without Sex" is the title of an Indie Film. I watched it on Netflix tonight. I typically only watch two types of films.....films with a strong inspirational current or indie films that delve into topics I can relate to.

"My Year Without Sex" is based on a married woman with children. She suffers a brain aneurysm and although she recovers, she is told she can not do any heavy lifting, sneezing, straining on the toilet, or orgasm. As the doctor says, three of those should be preventable.

I was pleased to see a film such as this. Having struggled with various health issues through the years, including Levator Syndrome, I can relate. Most men and women who struggle with chronic health issues will find many scenes in this movie they can relate to. However, this film also looks at it from the caretakers view also. The point is even made in the film that often the caretaker's role and needs are overlooked. I totally recommend this movie to couples where one has health issues that impedes the sexual relationship within the marriage.

I personally would not let my children see this film. This movie has a strong sexual undercurrent. It points out how society (this movie is based in Australia) is bombarding us with sex. This movie advocates for monogamy in a marriage and shows how adultery adversely affects all involved, even the mistress years later. Christianity is discussed throughout the movie, presenting it both from a devout Christian's viewpoint (even showing the devout Christian at moments of uncertainty) as well as from someone contemplating God's existence for the first time in their life.

This movie also touches on topics such as living on a tight budget, keeping up with the Joneses, and other scenes that will remind you of your own life!

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.

Chronically Ill Parents and their Child's Life

My older two children are very fortunate to attend a support group. It is a group that offers support for children who have a sibling with special needs. It has been a great help to my children when addressing the special needs of their younger brother. Yet, what they don’t have is a support group for living with a chronically ill (and in pain) mother.

My children have helped me tremendously through the years. When I was first diagnosed with Mixed Connective Tissue Disease (Lupus and Polymyositis), Reynaud’s Phenomena, and Fibromyalgia in 2003, my children were 6 years and 3 years old. It wasn’t long before I was to weak to walk My neighbor came over and took my bed apart, placing my mattress on the floor. My 6 year old son and 3 year old daughter would lay a sheet on the floor beside the bed. They would then roll me over onto the sheet and pull me to the bathroom along the floor. They fed me and brought me my medications. The full burden of caring for me was on them for a very long time.

So, what about now? Do they need a support group now? With a loud, resounding yell I say “YES”. Let me tell you a little about our day.

First thing in the morning, my now 10 year old daughter comes to wherever I managed to fall asleep at (I sleep on the floor often due to the bed and/or couch hurting to much). She spends at least an hour working out knots in my muscles. She massages, puts pressure on, stretches and does whatever she can to ease my pain and get my muscles working somewhat. She has figured out through the years how to stretch a particular hard to reach muscle. She knows how to stand on me or sit on me to relieve pain and ease knots. She’s discovered how to use her body to help her in this process.

While my daughter is spending the first part of her morning working on me, her older 13 year old brother is attempting to take care of their younger brother. He’s trying to figure out what his 4 year old, sensory stricken sibling will eat for breakfast. He’s trying to convince him to take his daily medications. He’s trying to transition him into the start of the day, all while trying to keep him away from me (he likes to join in and jumps and climbers on me causing more pain).

Once the knots are worked out as best as they can be, my daughter helps me onto the couch in the livingroom. She then brings me a bottle of water, a soda, and my morning meds. After helping me take my meds, she then goes toget her own breakfast (I’m usually to nauseated from the pain to eat breakfast).

Both the older two children knock out chores after breakfast that most stay at home Mothers do. They clean up after breakfast and make sure the common areas of the house are clean. They start laundry and clean their rooms. About the time they are finishing up, I am starting to get to a point where I can move on my own. I start feeling a little less sick and ask one of them to make me something to eat. They then start on schoolwork.

There are several more things my children do in the course of a day that other children don’t have to. My daughter brings me my clothes each time I shower since taking a shower drains me so completely. She also helps me to put on my shoes when I’m unable. She combs my hair for me. Both of the children find items I misplace daily for me. They prepare breakfast and lunch most everyday and assist their father in preparing dinner each evening.

With our finances as they are, and my being unable to drive, the children don’t get to do a lot. They don’t have the funds to buy things they’d like, nor a way to get there if they wanted. Yet, they still help me.

Don’t get me wrong, my children are by no means saints. They get attitudes, roll their eyes and disobey at times. We have the same battles over chores that any other family has.

I am not always observant to their plight. I don’t always notice that, even though they didn’t get the chores done like I would have, they still took care of me and their 4 year old brother all day.

I would love for my children to have a support group that they could go to and meet with their peers. A place where they can talk about their lives, their frustration, and their feeling under appreciated. A place where they can talk about living with a mother whose memory is affected and often can’t speak what she is trying to say. A place where they can talk about how much they have on them, and meet other children in the same situation.

I am truly blessed to have the children I do. My daughter takes over getting our son ready to go to church each Sunday. Our eldest son handles most meals. Sure, the kids give me a hard time about keeping their rules cleaning and having to clean up after their little brother………..yet, they still take care of both myself and our youngest son without complaining.

Universal Health Care

I remember when I was in school, a high school band from Canada came to play. During their stay here, we got the opportunity to learn about the differences between the United States and here. I remember one of the students had a myriad of health problems. He said he'd never live in the US because Canada gave him free medical care. Free??? Although young, I was already a champion for the underdog. I quickly learned that medical care was free in other countries. Yet, I also knew that here, in the US, my mother and father didn't go to the doctor when they were sick because they couldn't afford insurance and pay the rent, much less the expensive doctor bills. 

Fast forward to 2002. I, a single mother of two children, decided to move myself and my children to Maine. I had visited the state when my oldest son was 4 years old and had gotten sick. The doctor said he could handle the trip and it might help him. I found a place I fell in love with, a place I wanted to raise my children. By the time I finally decided to move, I had a good job and, although I didn't make enough to move out of subsidized housing, I made enough to provide all our needs and even some of our wants. My health insurance benefits had just kicked in. I was young, healthy, and had a place to stay free in Maine until I found work. I knew I'd find work there. The job market was great there. I had a great reference from my employer and had proven beyond a shadow of a doubt with them that, as a single mom, I had more motivation and drive then those who could depend on their spouse's income. 

Some of you know the story, I moved our personal effects to Maine and while planning to move our furniture back there, on a trip down, woke up unable to move my legs. Enter months of doctors, specialists, tests, home nurse care, and so on. Enter car repossession (insurance company argued that the flu was a pre-existing condition of my health disease and refused to pay the disability insurance that costed me a small fortune each month). I was able to get on Medicaid, but this greatly limited the doctors I could see and the treatments I could receive. I researched my newly diagnosed health issues trying to find something to get me healthy again, yet the doctors with the most promising treatments didn't accept Medicaid. I had to settle for what I could get. While bed-ridden, unable to bathe, feed or toilet myself I was only able to get 4 hours a day with a nurse. Four hours a day with a nurse. The rest of the time my two young children, one still a toddler and the other only a couple years older, cared for me and themselves. 

A few years later I remarried. I came off my myriads of medications, designed to save me but actually making me sicker then ever, and eventually was able to walk again. I was determined to build up enough strength to just stay out of bed for the day and watch my children grow up. I lost my Medicaid because, although my new husband made very little money, it was over the $600 month limit to have Medicaid. I survived off of samples the doctors office gave me (the same samples they are no longer allowed to give without paying taxes on) and visiting free clinics. Free clinics where the doctors had no experience dealing with my specific health conditions, but could write prescriptions for pain medications or muscle relaxers (the very things I'd hoped to avoid). Life without health insurance sucked. Yet, we couldn't afford it. I had called but the premiums they quoted, based on my pre-existing conditions, was insane. It was more then all our monthly bills combined!! 

And so, for many years, I lived without health insurance. I've kept up to date on my medical conditions, studying the latest developments, reading about the newest clinical trials, seeing the wonderful medications that work wonders for so many....but aren't marketed to treat that yet. Yet, I didn't have insurance. I couldn't get in. Maybe to the clinical trials.....but that required stays out of state. *sigh

After my divorce, I qualified for Medicaid again. Excited about the advances made in the medical care concerning my various health conditions, I wanted to jump into the new treatments. Many of the patients I had talked to who used them had wonderful results, even being able to return to work after years of being cared for! I wanted that. I wanted to work. As I started going to the doctor, I found out that, although there were many drugs to treat my various conditions, they had not been "approved" to treat my health conditions specifically. So, my Medicaid wouldn't pay for it. I was told that, more then likely, other health insurance would. Yet, I couldn't afford other insurance. So, I settled for what I could get. I faced the side effects and waited. I tried the different meds that were approved but, even when they helped one medical condition, another would worsen. I kept up on my research. I talked to hundreds of patients weekly who shared my health conditions. I found out what worked for them, only to be turned down by Medicaid because those same things weren't "approved" for my conditions. 

Let me explain "approved". During the Vietnam war, soldiers were given a medication for malaria. The soldiers reported that this same medication (Plaquenil) helped relieve their rheumatic symptoms. Yet, it was 1998 before the medication was approved (by the FDA) to treat rheumatic symptoms. At this point in time, Medicaid would have then paid for it to treat rheumatic conditions.

For the first time since I got sick, I have the opportunity to have health insurance. My husband has a good insurance plan. The changes in health care over the past years means that, despite my pre-existing conditions, I can get coverage. His health insurance company isn't going to charge me a higher monthly premium to cover these conditions either (also due to health care reforms through recent years). 

I've read tons of articles lately that explain that those who can afford health insurance will cover the costs for those who don't. Premiums will rise but all will be covered. No where will a parent have to choose between paying the rent, or having health insurance. No where will a parent not be able to get the medical care they need because they make over $600 a month, but not enough to afford health care. My husband, and others who can afford health care premiums will be footing the bill for all those that can't. 

And I personally want to thank each and every one who chooses to pay their health insurance premium each month without grumbling and complaining..........knowing exactly how blessed they are. Not only has God blessed them financially to be able to pay health insurance premiums, God is now allowing a health reform to take place in America so that these same people who have been paying their premiums for years will now know that they are helping provide health insurance to so many in need. 

Jesus said that we should treat one another as we want to be treated. How many times have you seen someone who didn't have the medicine they needed, or who was sick and needed to see the doctor but couldn't afford it?? How many times have you yearned to help them, only to find out the medicine they needed was more then your weekly paycheck? 

For the first time since my getting sick, I'll have health insurance. Each week when I see how much comes out of our paycheck, I will be proud knowing that I'm  helping all Americans have free health care. I'll know that somewhere out there is a mother who is reading about all the new medications that can help her once again become employed..............and my premiums helped her to get that medication. 

I know the health reform plan isn't perfect. I know it'll take years to tweak it out and years to make sure everyone is covered. I've read the negatives and the positives of it. But all I can think about is the years I wasn't covered. The years I couldn't get the medical care I needed. The years my young children watched me writhe in pain and unable to get out bed and have to bring me food and help me toilet. If this plan was in effect years ago, my children wouldn't have had to endure seeing me so sick. They wouldn't have had the full burden of caring for me medically because there was no insurance to have a nurse come in. 

My health insurance premiums will pay to keep other children from having to endure what my children did. That's enough for me.

********************************************************************

Please take a moment to read "Lessons of a $618,616 Death" by Amanda Bennett in the March 15, 2010 edition of Business Week Magazine. (Click on the title to be taken to the website with the article)

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”