Tuesday, March 30, 2010

The Pain Patch

After the whole fun trip to the social security office with a side trip on the way home to the emergency room just to kick the weekend off with a bang, we were able to make an emergency appointment with the pain doctor for the following Monday. It was an agonizingly long appointment. But don't all doctor appointments seem agonizingly long when you don't feel too swell?

A visit to the pain doctor usually is long. They have to ask lots and lots of questions as to how you are doing since your last visit. What kind of pain brings you in there to see them and so on. This you have to tell to the first nurse and then the nurse practitioner and then the doctor. As Bob is laying there in agony, I have wondered if it was possible to round up all three and have them come in there so we could do this all at once. Or maybe we could just record it and they could go over it later? I guess that is not their policy. I thought it was a good idea.

After going over what happened at the disability appointment, his overall pain levels and the concerns our family doctor has as to the effects debilitating pain has on the mind, they gave us two choices. One was a pain patch that has to be changed every 72 hours. The other was morphine. We chose the patch or should I say I chose it on his behalf. By the time we got to this part of the appointment, he was in too much pain to make a conscious thought or decision. Kind of like when we were at the ER and the nurse asked him what his pain level was at and he told them...ah, a 6 or a 7. The nurse then looked at me and I said how about we try a 12. The nurse said that she'd go with my answer since it seemed more in line with what was going on.

He also is having an awful time with his balance. His pain levels are throwing everything off including that along with some of the medication he is taking. The doctor's office was offering to prescribe a walker but Bob isn't ready to go that route right now so we opted for a four prong cane. There is nothing about what is happening to him that isn't frustrating and somewhat humiliating. It's hard when you are at a point in life, when canes, walkers and narcotics are not where you want to be or should even be. To not have any real concrete answers as to why just adds to the weight of the whole situation. There are some other things that the doctor could try to ease the pain if only we knew exactly where the source of pain is coming from. For now, those are on the back burner.

He's been on the pain patch for a couple weeks now. They are hoping between the patch, another narcotic, a nerve blocker and an anti-inflammatory, that it will help him at least have some relief. It has helped. It's brought the pain levels down a notch enough to let him sleep more than he was, to get around the house in small doses and to be able to take a shower without help. However, he still has awful periods of pain off and on during the day which they warned us would happen. We have another visit to the pain doctor in a couple weeks to which they will determine if they need to up the dosage on the patch to the next level. So far, I'm thinking they are going to have to. While it's helping, he is still not able to do a whole lot.

He's hoping that if they could just get the pain down lower, he could work. That is so heavy on his heart. His not being able to provide for us has been one of the worst things about this whole situation. We continue to pray for his healing. That God will bring that about soon but we also know that God has a plan and a purpose for all of this.

We both want to share the hope of Christ in even the most desperate situations that we face. It's hard sometimes. We've experienced despair, discouragement and moments of hopelessness but we know beyond all that, God fills us with the grace, the strength, and the courage to face each day as it comes. One reason we are able to do that is due to the prayers that are going up on our behalf and the spiritual food we are constantly feeding our souls. How could you survive one moment of affliction or trials without your eyes properly focused on the One who is our source of strength, our source of courage and on the One who gives us life? When my eyes lose that focus, that is when I fail to function in hope, courage and strength.

If you are in a desperate situation, remember that God has not forgotten you. He has his eye on you and will not let you go. Seek Him with your whole heart and hang onto to him. He is the only way, the only truth and only through Him do we have what it takes to live this life.

Wednesday, March 17, 2010

A Day at the Disability Office...

This past Friday we had an appointment to file for disability. We had previously filed awhile ago but were denied. They don't like 'pain' as a diagnosis. We could have appealed but needed an attorney which we couldn't afford and didn't know who to go with along with the fact we were scrambling to find a place to live and pack the contents of our home. So here we are again....

We visited with a lawyer recently to discuss just exactly how to go about all this and to seek some advice. He suggested we just refile and then, he would help us from there. He was pretty confident that we had a great case for filing as anything that requires Bob to attend outside of the reclined position is excruciatingly painful and leaves him curled up on the floor in a sobbing mess. The lawyer saw this in action firsthand. This is so humiliating for him but hasn't much control over it when the pain is that bad. The hard part is me getting him to the car when he's in that position.

We had previously filed online but the lawyer told us that we needed to actually go into the office so that claims person could see for herself what kind of shape he was in. I guess they have a list of mental evaluations that they make while you are in the interview. So this is what we did. We went into the office and filed.

It was a horribly long, long interview as they gathered any and all information. After about the first half hour, Bob was incapacitated and absolutely unable to answer any of the questions to which I ended up finishing up the interview for him. At some point, Bob was on the floor hunched over holding his cane sweating so badly that his hair and shirt were absolutely soaked just trying to maintain breathing that the security guard came over asking us if we needed an ambulance or medical attention. We thought if we could get him into a different position that might help so the security guard tried to help him by grabbing onto his sides which are an area of extreme pain. This just catapulted him into more pain. I felt bad for the security guard. He didn't know and felt awful about it.

Periodically, the security guard would walk by and check on him along with some of the other workers. We finally came to the end of the appointment and it was time to get to the car. It was a long, long walk to the car and I had an awful time trying to get him to it. He's so worried that he's going to hurt me or the baby but we try to manage as best we can. I couldn't leave him there. I don't think they'd allow that. :-)

By the time we got to the car, he was doing even worse so I ended up taking a stop at the ER. The pain was more than he could bear. With the help of some nurses, we got him inside and to a bed in no time flat. I am so thankful that there wasn't any wait. That was a small miracle in itself. They ended up giving him a pretty hefty anti-inflammatory/pain shot which settled things down a bit and then we were on our way.

When we got home, our family doctor called and Bob was able to talk things over with him. Coincidentally, Bob had sent him an email earlier that day explaining what a tough week he'd had pain-wise to the point, he's been having to wake me up during the night to help him. The doctor is very concerned with the amount of pain Bob is having to endure for such a long time on his mental condition so he didn't want us to wait the couple weeks we were originally scheduled to go back to the pain doctor. So he was to call and see if they could get him in ASAP.

We are hoping that we will hear something from the disability office in the least amount of time possible but it could take 3-6 months. It's in God's hands now. We have a lawyer who is ready to help when the time comes even though we still can't afford him but are confident that God will provide the necessary means as He has been so faithful through this whole ordeal. I know that He will not abandon us just as He has promised.

It's a tough place to be....'in need'. I know that disability and state help is there for those who need it but it's hard to be in a position of need. We have always loved to be the 'helpers' but have had to learn how to accept 'help'. The emotional and mental implications of having been in this position are difficult. We don't like to impose or be a burden but are so thankful for those of you who have offered your hearts, your hands and your sustaining friendship. You are a true example of what the body of Christ is and continues to be....the hands and feet of Christ.

Friday, March 12, 2010

Pain Treatment - Round 3

It's been a couple of weeks since my husbands last treatment with the pain shots in his back. Unfortunately, we've seen no relief from all three sets. It's extremely disappointing as I was sure this was going to help if only to dull the pain some which would have been a welcome result. We knew this was a possibility but yet, when you are in that much pain, you hold onto every hope that something...anything will work.

Our family doctor also ran a panel of blood work on his immune system before we proceed to seeing a immunologist. We received the results on that this week. Everything came back negative. This is great news, however, we are still at a loss as to what is causing this debilitating pain. He's seen so many doctors and had so many tests but still remains to be undiagnosed. Frustration doesn't come close to how we are feeling.

We are currently waiting on one more test result to come back. He had an EMG last week to see if they could pinpoint which nerve set is causing the problem. Hopefully, they will call soon. The waiting on test results is driving me nutty.

I'm not sure what is coming next. We need to talk to the doctor after we get this last test result back. It's a feeling of helplessness. We have exhausted so many different avenues but nothing is being revealed. Bob has been in more pain then he usually is this week if that is possible. I feel so desperate for answers so we can proceed with some kind of treatment, some kind of relief. Watching him sob from the pain and the weariness of dealing with it day after day is so draining emotionally for all of us.

It's so hard for me to hold onto hope when there just doesn't seem to be any answers or any hope of finding one. I know that God has this situation in His hands and that He has a plan for this. It's almost impossible for me in my humanness to even contemplate how any good can come from this. This is especially difficult when I feel like we are merely existing and trying to get through each hour without losing it. Sometimes when his pain level is at it's highest and he's had all the pain meds he can take, all I can do is sit there and hold his hand praying that God will give us both the courage and strength to make it through. It's my faith in Christ and not my feelings that I have to hold onto. My feelings are so undependable but God is not. He knows our pain. He supplies our needs, that also includes emotional needs and is working this all out no matter what state of mind I may be in.

We've both been fighting discouragement the last few weeks and are so appreciative of the prayers that have gone up on our behalf. This race we are running is a tough one and all the support we've been shown has been like a cool, refreshing cup of water that inspires us to get up and continue moving forward. So thank you from the bottom of our hearts for your friendship, for your love and for your prayers as we continue to search for some answers.