My Story - August 2003

This is the story of the most difficult time of our lives. May the telling of it bring hope to others and help me to heal.

9/4/03 Thursday 9 am

This is the day we see the specialist in LR, and I am asking God to have mercy on us in every way. Phil seems to be doing somewhat better and yet he was crying again yesterday. When I asked him why, he said, “Sometimes I think I won’t ever get better.” I kept thinking about that phrase “sometimes I think”. That is what is wrong with us - sometimes we think, instead of simply trusting God.

During my “Breaking Free” Bible Study this morning, God again gave me Isaiah 61:3 and I felt like He said that instead of ashes, mourning, and despair, He will give me a crown of beauty, the oil of joy, and a garment of praise.

I have loved you with an everlasting love; I have drawn you with loving-kindness.

I will build you up again and you will be rebuilt, O Virgin Israel.

Again you will take up your tambourines and go out to dance with the joyful. Jer. 31:3-4

5 pm

We had a very easy trip to LR and a friend met us in the waiting room. We got there an hour early and they took us back 45 minutes before our scheduled appointment! We were very surprised at what the doctor thinks that it actually is. Dr. K. thinks that Phil has atypical inflammatory bowel disease and that the Pyoderma and the Rheumatoid Arthritis symptoms are a “side-effect”. If this is true, I think that it is very good news. He said that you treat bowel disease with something other than a steroid. He said that prednisone can make you feel “crazy” and can definitely cause blurry vision, and that these side effects should decrease as the dosage is decreased. He is going to let Dr. D. make the decisions on the prednisone. He looked at Phil’s ankles and said that it definitely looks like Pyoderma. The only bad thing was that Dr. K. is absolutely insisting that Phil get a colonoscopy and the thought of another procedure is almost more than he can bear. While none of this is good to have, inflammatory bowel disease is far better than Arthritis, and I am very encouraged.

At first, things didn’t seem to be going very well, and since we were taken back before our friend even got there, I went out to talk to her while Phil was waiting for an Xray,. She sat in the waiting room the whole time praying for us. She is a true and precious friend. When I went back to Phil, I started seeing things differently and then when Dr. K. came in the second time, I asked a lot of questions and was actually encouraged. Prayer changes everything.

This morning during quiet time, I felt like God said, “I don’t want you to be afraid.” Of course, I felt a little fearful then, wondering what was going to happen. As Dr. K. was examining Phil, he was very interested in his spine because he hadn’t known about the birth defect in his vertebrae. At one point he wondered out loud if Phil had “Ankylosing Spondylitis”. Of course, I knew what that was because I had read all about it on the Internet! It is a very bad form of inflammatory arthritis affecting the spine. I had a brief struggle with fear and then made a decision that I was absolutely NOT going to live like that again. I refused to fear and then it was gone, and after the Xray, Dr. K. said that Phil’s spine was fine.

My Story - August 2003

This is the story of the most difficult time of our lives. May the telling of it bring hope to others and help me to heal.

9/2/03 Tuesday 7:30 pm

A woman in my Sunday School class, went to heaven last night. I think that’s a much better way of saying it. It was unexpected, even though she had ovarian cancer. She looked fine the last time I saw her, which was about 6 weeks ago.

Today I started working 20 hours a week at the store and it was hard because I know the store isn’t doing great financially and that he is doing this to be kind and also because he doesn’t want to lose me altogether

Phil is about the same, which isn’t saying much. I don’t know whether it’s the prednisone or the depression, but half the time it’s like he isn’t all there. I will talk to him and not be able to tell whether he even heard me because of the vacant stare on his face. Yesterday we worked out a schedule of daily activities for him and that seems to have helped today. He is very much like a little child, needing to be told what to do - even with the most basic things, such as eating and drinking water. It’s very upsetting and I cry almost every day now. In a lot of ways, this is harder than when he was in the hospital, although I don’t feel afraid, just discouraged.

The support system is quieter, mostly invisible, although I know it’s still there. People don’t call anymore or come over. After all, he is supposedly well now. On Thursday we will go to a specialist in Little Rock. I am trying to not expect too much from him.

My Story - August 2003

This is the story of the most difficult time of our lives. May the telling of it bring hope to others and help me to heal.

8/30/03 Saturday 10 pm

It is so nice to be at home and not at the hospital, and it is really nice not to be afraid. This has been the nicest day in the past 2 months. No one has asked how Phil is. I’ve been able to get a lot done and yet have felt relaxed and took a wonderful nap.

I sort of had a melt-down earlier this week. For 5 out of the last 6 business days, I have been at the medical clinic for one reason or another for either Eva or Phil, plus I took Phil to see Dr. D. on Wednesday, and I guess it was too much. The last straw occurred on Thursday morning. Eva had seen Mike on Tuesday about her hypoglycemia and he wanted to do a 5-hour glucose tolerance test on Thursday. Since Kevin had to go to work, I said that I would come and be with her after I was finished at work.

Even though the Lord had told me to leave Phil alone, I had been so very frustrated and had been pushing him to try going back to work, and he had told me that he needed a note from Dr. H. saying that he could go back to work part-time as able. I asked the nurse for the note and she had come back to our waiting room saying that Phil had called and said that he was not going back to work next week and didn’t need the note. She made it sound like that was the only reason he had called (it wasn’t) and I was furious. I said that I wanted the note so that whenever he decided to go back, we would have it. I told her that all he does is sit in his room and that he was afraid to re-enter real life. (In fact, he had said to me, “You need to get on with your life.” like he was dead.) I had expected trouble physically but was totally unprepared for emotional problems.

She finally agreed to give me a note and while she went to get it, I called Phil because I was so angry that he had caused all this trouble with the nurse. While I was still talking to him, she came back, handed me the note and then stood there. After I got off the phone, she said, “The doctor said that work is the last thing that he needs to do.” As we talked, she said that I needed to get him out of the house every day because that would help him. This was a total surprise and at first, I couldn’t even think of anywhere to take him until Eva suggested the store where I work.

Looking back, I can see that being at the clinic all that day and then having the nurse lay that responsibility on me was just too much, but at the time all I was aware of was feeling overwhelmed and also feeling very resentful towards Phil. I felt desperate to get away from him and be alone, but felt like the doctor and nurse were expecting me to keep him with me all the time that I wasn’t at work and that I had to think up places to take him. It felt like (feels like) I have a small child to look after and it was so unexpected and just too much.

Yesterday I cried through my whole quiet time. I thought that maybe it was just a needed release but when the time was over, I wasn’t finished. When I came home after work to get Phil for his “outing”, I couldn’t even be nice to him and knew that I had a major problem

First, we went to get his paycheck, but I realized that he didn’t need to go into that building, so I went in intending not to tell anyone that he was in the car. But the secretary needed him to sign something and then when I opened his check, it looked like a regular paycheck so we thought something was wrong. I told her that he was in the car but I didn’t want anyone else to know, so she walked out there with me. As they were looking at his check stub and trying to figure out what had happened, I saw a folded yellow note at the bottom of the envelope. It said that due to donations, they were able to make payroll for him. When I handed him the note, he started to cry and cry. It was hard for him and kind of awkward because Wilma was there and he couldn’t stop crying. She was sweet though.

After that I did other errands, including going to the medical clinic to get another prescription for him, this time for an anti-anxiety drug. We ended up at the church building because I wanted to drop off the tithe, plus I thought that we both needed prayer. By that time, he was a wreck emotionally. We sat in the prayer room waiting for the pastor and Mark, and Mark rushed in to get a book. On his way out, he stopped and hugged Phil, and after he left I told Phil that was a big deal because Mark isn’t really a hugger. He started tearing up again and said that he was probably going to cry when they prayed for him. They came in and I left because I needed individual ministry. Throughout this ordeal, we have been together more than ever before and it has been good for our marriage, but I need to be separate from him now. I was craving separateness.

When it was my turn, Mark came and told me that he had to leave. He was very sorry and was sweet about it, offering to meet with me any time that afternoon, but by then I was feeling better because Phil and I had talked in the car and I was able to tell him how I was feeling. The pastor and I mostly talked and then he prayed and it was OK.

When I went back into the sanctuary to find Phil, he was sitting on the front row crying and crying. Everything having to do with worship is dead in him and it had just hit him and he was grieving intensely. God had given him a vision and it was dead. I told him that this is actually a good thing because it needs to die so that God can resurrect it.

I wonder how long it will be. How long until Phil is better? How long until the works of our hands are burned up? How long until the resurrection and fulfillment of the vision we feel like God has given us? How long?

Taking a Break

I'm taking a break from posting about our medical/spiritual journey and posting something current.

I've got a million things to do! So why am I writing instead? Because it helps settle my spirit so that I can move through my day peacefully.

For a while now, I have been posting entries from my "book" which are simply journal entries which have been selected and edited. It is the story of Phil's medical crisis which began in 2003. There is a counter that tells me how many times the page has been visited. It appears that I am the only one visiting my blog and that is only to post daily. It is discouraging that no one cares about my story, especially because it's a little scary to share from my heart. But probably they don't even know my blog exists. I could "tell" them on facebook but I'm not sure I want all my friends to read it. I will keep on posting (and it should take a year or more) but it feels lonely right now.

When God tells us to give thanks for the hard stuff, He doesn't mean to thank Him that one day it will all be over, which is what I tend to do. I'm trying to do better. When I thank Him (the right way) for the hard stuff, I have found that He begins to show me how He can use it for good and that changes my perspective and then it's easier to thank Him. It's like an upward spiral.

OK, now I will go and get on with my day.

My Story - August 2003

This is the story of the most difficult time of our lives. May the telling of it bring hope to others and help me to heal.

8/27/03 Wednesday 9 am

I am so frustrated, mostly with Phil but also with my life. First the good news. God provided $1000 through Phil’s parents right when we needed it.

This morning, the noise in the car engine seemed worse so here I sit at the car place for the second time in a week. I am frustrated but not afraid.

Phil is doing better and seems fine to me. I am really frustrated that he won’t at least try to go back to work for an hour. He doesn’t hurt at all and his feet are fine. He isn’t sleeping that much anymore since he cut down on the iron, and he isn’t that depressed any more. The only complaint he has it that he “can’t concentrate”, whatever that means. I am so frustrated and when I talked to God about it, I felt like He said - In quietness and trust is your strength. (Is. 30:15) In other words, I need to leave him alone and trust God.

Since I started taking communion daily (on Aug. 18), I have noticed a few changes. First of all, I have felt very close to the Lord and filled with love for Him. I guess that’s what the word “communion” means. I have also noticed some physical changes. My intestinal problem seems to be completely gone and my heel doesn’t hurt as much. My left shoulder feels like it is (slowly) getting better.

This morning, as I was taking communion, it occurred to me that the bread represents Christ’s body upon which He took the stripes for our healing, and the wine represents His blood which brings deliverance. Together, the wine and the bread represent salvation. So we have salvation, healing, and deliverance symbolized in communion, which is the same thing the Lord speaks of in Isaiah 61:1.

My Story - August 2003

This is the story of the most difficult time of our lives. May the telling of it bring hope to others and help me to heal.

8/25/03 Monday 8 am

This morning during quiet time, God gave me an amazing verse that I am very excited about.

I have taken out of your hand the cup that made you stagger. Is. 51:22

I hope that this means that the hardest stuff is over. When I read it, I felt like He was talking about Phil’s health. And then I believe that He gave me some other verses.

Then your light will break forth like the dawn, and your healing will quickly appear. Is. 58:8

Though the mountains be shaken and the hills be removed,

Yet my unfailing love for you will not be shaken nor my covenant of peace be removed,

Says the Lord, who has compassion on you.

O afflicted city, lashed by storms and not comforted,
I will build you with stones of turquoise, your foundations with sapphires.
I will make your battlements of rubies, your gates of sparkling jewels,
and all your walls of precious stones.
All your sons will be taught by the Lord, and great will be your children's peace.
In righteousness you will be established:

Tyranny will be far from you; you will have nothing to fear.

Terror will be far removed; it will not come near you.
If anyone does attack you, it will not be my doing;
whoever attacks you will surrender to you.
See, it is I who created the blacksmith who fans the coals into flame
And forges a weapon fit for its work.
And it is I who have created the destroyer to work havoc;
No weapon forged against you will prevail, and you will refute every tongue that accuses you.
This is the heritage of the servants of the Lord,

And this is their vindication from me, declares the Lord. Isaiah 54:10-17

One week ago today, I started taking communion every day during quiet time, and I have noticed two things. I have felt closer to the Lord all week and have been filled with love for Him, and my shoulder hasn’t hurt as much. I really, really like doing this and highly recommend it to everyone. Phil has started doing it too.

My Story - August 2003

This is the story of the most difficult time of our lives. May the telling of it bring hope to others and help me to heal.

8/24/03 Sunday 4 pm

We spent Friday morning at the medical clinic and Phil seemed worse and worse to me. I felt certain that Dr. H would hospitalize him. He got so tired that I had to ask them if he could lie down. He got up from the wheelchair and onto the examining table and fell promptly sound asleep for about an hour. So imagine our surprise when Dr. H walked in and said that his lab work was great. His hemoglobin was up from 9.8 to 11.4 (12-13 is normal). I thought of the verse in Hosea 11 that said - But they did not know that I healed them. Dr. H gave him some anti-depressants which we thought would also help with the fatigue, but they haven’t. Now he is in a better mood when he is awake, but he is still spending 75% of his time sleeping.

This morning in church, God was telling me to trust Him generously in the area of finances and that somehow by doing that, I will be “sowing faith”. I don’t understand that at all, but I do want to trust Him whole-heartedly. He said that He will meet all our needs. During worship, I felt like God gave me Isaiah 61:1-3. I felt like verse 3 was for me, and that He was saying that although now I have ashes, mourning, and despair, He will in time remove these things and bestow on me a crown of beauty, the oil of joy, and a garment of praise. I felt like verse 1 was for Phil. I felt like God was saying that He is anointing him to bring salvation to the lost, bind up the brokenhearted, and release the prisoners from darkness (salvation, healing and deliverance).

A friend called this morning and told me that her daughter had been raped a few days after she graduated from college. It has been extremely hard for the whole family, but they are doing everything right for her. It’s hard when evil happens to God’s children because we think we should be immune to things like that. A lot of godly people I know are going through tremendously difficult things right now. P seems really lonely and is reaching out for a friend, and so I think that I am going to try to call her every weekend for the time being.