To me, the fallen petals represent what has happened to our lives. And the ones that are face down are things that we can't do at all anymore. And the ones that are still face up are the ones we can still do... but at a price.. not like we used to be able to.
I took this picture after a rain storm and Fibro is the storm that has come thru all of our lives.

Saturday, January 29, 2011

My Fibro Thought I Had Forgotten About It.

 January 29, 2011 Note:  I've not been to this blog in sometime and discovered that I had several completed posts that I never scheduled for posting.  Hmmm.  Can we say fibro fog?  So here are my thoughts from August 18, 2010.  BTW, I'm still waiting for my SSD hearing.  Sigh...

What a day!Yesterday afternoon my fibro slapped me up side of the face and said, “Hello!Like it or not, I’m here.” My pain level shot up through the roof and put me down in the floor. Guess it thought I forgot about having fibro. Like that’s possible. I went to bed and slept, got up and had dinner with my darling hubby and then went to sleep some more. It’s 4:30 and I’ve had two naps today – long naps of 3 or 4 hours each. Truth be told, I wouldn’t have gotten up had I not had a phone meeting scheduled with my case advocate in my attorney’s office. She was filling out even more forms for my Social Security Disability appeal. Alicia is my hero today because I think I would have pulled my hair out answering those questions if I had to sit down and fill out the SSD forms myself. Just talking to her was exhausting but I was so proud that the fibro fog didn’t kick in and I was able to answer all her questions.We didn’t even have to play the guessing game over what word I was trying to remember or anything like that. Sad that I’m excited about that isn’t it? I forget what percentage of my back pay they get, but it’s worth it just to not have to fool with it. She said they have a 96% success rate and I certainly hope I’m not one of the 4%. While I doubt I get any more money than I’m getting with my LTD insurance claim, it will be nice to have it done and over with.

My pain level is frustrating me so much as is the fatigue. The heat has been horrendous and I am staying inside as much as I possibly can. The heat has made the fatigue so much worse. Usually, I can work through the pain if I have to but there is no way to work through fatigue. If it was a life and death situation, I guess I’d be on the death side. My pain even with medication is up towards 10 today. It’s time for another pain pill. I hate taking them because I know that I will eventually get to where I have to take stronger meds the more I take. But what do you do? Do you hurt and lay in bed or do you take the meds and have some sort of a life?

The myofascial pain has been awful for the last few weeks as well. The pain from my knees down has been the worse pain. My arms are tender to touch and sometimes I hurt my self just by scratching.< But my legs, oh my! On top of everything else I have severe edema and need to wear compression hose. Problem is, some times the CMP is so bad that I can’t stand the compression hose touching my skin. When this happens, I normally can’t stand the pain of putting them on. Even with the hose, my lower legs and ankles swell a lot. Without them, below my knee resembles a light pole – no calves, no ankles, just a round pole. And of course, they hurt so I spend my time with them propped up as much as I can.

On my two denials from SSD, they said that they believed I could no longer function as a paralegal or a secretary but that I could be a store clerk. Would someone please tell me, how I’m supposed to be a store clerk? I don’t think I’ve ever been anywhere that the clerks could sit down and prop their feet up or take a nap when the fatigue was just too much. I’m also wondering if they think that store clerks don’t have to remember things. One of my memory problems is that I can not retain what I learn.Teach me today and by Saturday, not only will I not remember how to do it, I won’t remember you teaching me to do it. With that problem, how am I supposed to learn to run a cash register, store rules, etc.

I’ve often heard it said that SSD turns you down 2 or 3 times just because they think you’ll go away and they’ll save money. This Southern Lady ain’t going away so they need to approve me and quit wasting everyone’s time. I’m tired, I hurt but I’m not going away. I’ve worked hard since I was 17 years old. I’ve put in my time, and now it’s time to get some of it back. I use to know someone who joined the Navy, got yelled at in boot camp and had a nervous breakdown. (I personally think he deserves an Academy Award for his acting but that’s another story.) Last time I was in contact with this person, they were getting over $20,000 a year in VA benefits.If that BS can be approved, then SSD shouldn’t have a hard time approving me.

I am climbing down from my soap box and rambling on to do something in the house. Until tomorrow folks may you pain be low and your spirits high.

Do you remember to praise God in your struggles?

As I was going through my emails, I had forgotten that I had signed up at a website called A Virtuous Woman . It's a ministry for women based on the scriptures of Proverbs 31. I've been receiving emails about a devotion series that's going on at the site and decided to check it out. I came across a discussion on 2 Corinthians 1.  I thought the verses that the writer was talking about were encouraging words for those of us with chronic health issues and all that goes with them.
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." 2 Corinthians 1:3-4
How often do we remember to praise God and ask for His comfort when we are in the pain that we are? I know for me it's not nearly as much as I should. Several years ago Bill was having a horrible time with back pain. One night nothing would help. He took all the pain pills he could. Lay on the heating pad. All to no avail. Because he didn't want to wake me up, he said he literally crawled to the living room and then couldn't get up off the floor into his recliner. As he laid his head on the chair, he said the only thing he could do was to call out to God saying "Please help me.” Bill said that was the only prayer he could put together the pain was so bad. As he lay there calm came over him and he was able to get up in the chair, kick back and go to sleep. When my pain began to get so bad in 2009, I remembered that story for comfort at times when nothing else would help. When I turned to God for my comfort, He heard my prayers and gave me the strength to get through the day. What we consider “getting through the day” is usually much different than those without the pain we deal with every day of our lives. Still to us, it is a huge accomplishment.

Paul goes on to say:
 "We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that might not rely on ourselves but on God, who raises the dead." 2 Corinthians 1:8b-9
Verses 8b - 9 remind me of our daily battle with life. There is nothing easy about our life. We face pain, families and doctors who don't believe we are sick, financial struggles because we are no longer able to work. Even basic household chores are the same type challenges to us that marathon runners face. Some of you may think I exaggerate about the house work being like a marathon. Trust me, for some of us it is not an exaggeration. I think it's safe to say that we are under great pressure that we have no ability to endure on our own. I think you would agree that we also have times in our life where we have felt that we can't go on and feel like we've been given a kind of death sentence.

It's such a simple thing to say a silent prayer and ask for comfort from our pain or other obstacles in our way. It's a simple thing that I often forget to do until I've used up all my earthly means of finding comfort or trying to work through the obstacles for myself. I've decided to challenge myself to do everything I can to become a person who turns to God first instead of trying to solve the problem by my own means. Will you join me in taking on the challenge?