Monday

Time seems to be creeping by. Why does time fly when you are having fun but barely move when life is tough?

Another day of challenges. I suspect that I have been having spinal fluid leaking since the spinal tap, which is probably what has intensified the headache so much. I am finding that if I lay down for most of the day I can control the pain a bit and today I was able to be up a little more before it became unbearable. I can have a blood patch done, which seals the small hole in the spinal cord but I think that I will just let it heal on its own at this point and stay down.

Another disappointment--my local doctor once again applied for me to go to Mayo and we got the rejection letter today. It is discouraging to be rejected by a hospital that is supposed to be for difficult cases. The letter is vague but I think that they believe there isn't much else to do.

My sister Renae is getting records together and we are going to send them to UCLA and a univerity ns group in St Louis and a university ns in Columbus Ohio. They were each chosen for the fact that they have each worked with at least once case like mine. So we will see if I will get the acceptance letter or rejection letter from those, but at least we aren't counting on just one.

Sunday

I have found that if I stay laying down for quite a while that my headache is more manageable. The longer I am up the worse it gets, which to me (non neurosurgeon that I am) indicates a low pressure problem. My family is getting involved to help me get some help somewhere. They have some ideas but we are a ways from answers at this point. Living in the midwest does limit my options that seem more doable.

Saturday

I am not so confident that the drug coctail is going to work. The second dose was this morning. It gives me some relief but not dramatic. It has gotten stronger this afternoon so Kyle just gave me another shot. One more day and then we may need to come up with a new plan.

Friday continued

I had the drug cocktail this morning which was a good thing because the headache was very strong again. It helped for several hours but by 4:00 I was quite miserable again. Kyle gave me a shot at 5:00 which has made it bearable. I'm hoping that tomorrows second iv dose will give more long lasting relief.

Friday

My greatest fear was realized. . . Dr Heffez said there isn't anything he can do.

I called my doctor in RV and we are going to try an iv drug coctail for three days in a row in hopes that this is just a "normal" headache and that the drug will break it. I am praying that this will work.

Thursday continued

I guess the headache was more than slightly stronger. I tried a few of the things that will sometimes give me a touch of relief but instead it continued getting stronger. By lunch time when Kyle came home he decided that I probably should have a shot to ease the pain. It is still quite strong but a bit more manageable than before the shot. I have stayed away from any meds (except the Sunday it started) just so that I could truly gauge where I am pain wise. Today it was well worth giving in on that. I don't think any of this is related to the spinal tap simply because I didn't feel much different yesterday afternoon/evening when I usually will feel different.

Romans 5:3 & 4 More than that, we rejoice in our sufferings, knowing that suffering produces endurance and endurance produces character and character produces hope. . .

Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.

Great reminders to me that my situation is not hopeless no matter how it appears to me sometimes.

Thursday

I was able to have the spinal tap yesterday afternoon in RV. The pressure came back lower than it ever has. I really don't know what the next step is. I have such a fear that he will tell me that he is sorry and there is nothing that he can do. I don't think I can live this way.

His office called yesterday saying that he will call either late today or tomorrow since today is his surgery day again.

The headache is slightly stronger today.