continuing along

I seem to be holding fairly steady. Yesterday wasn't so great, but still quite tolerable. Things seem to stay fairly busy and sometimes I am amazed at how much I am doing while other times I get a bit frustrated at how little I can do. What a crazy problem. It boils down to perspective. If I compare it to life before headaches, I am doing pathetically little. If I think about what I could do 6 months ago or a year ago, I have made progress.

Probably the best thing to me right now is the typical person that sees me doesn't immediately worry about me collapsing in front of them. I think I am looking pretty normal. A few months ago if stranger saw me they seemed to become quite concerned about me staying on my feet. Now I really don't get comments from strangers--it is nice to blend in. :) Although having hair covering my head probably helps that a bit. :)

Have I said lately how thankful I am to be alive? I am so glad that I am here with my husband and kids, seeing their programs and hearing them talk about things that are exciting them. It would have been easier for me if I hadn't pulled through everything, but I would have missed so much! It makes me sad thinking about my kids growing up without a mom. I am thankful that the Lord saw fit to keep me here a while longer. I may not be the "old" mom that could do everything I could do with and for them before, but at least I am here.

Busy times

It has been a busy time again, but I am doing ok over all! The older kids were in the school play and did a great job. The school auction was fun but much too loud (even with earplugs) so I paid for the short amount of time I spent in the actual auction for a couple days with a stronger headache. Yesterday Tara slammed her finger in the door and really hurt her finger. Kyle and I were gone so Tanner cleaned it up and wrapped it. Since she was playing I didn't worry much until I took off the bandaid this morning. The flesh was scraped way down and very swollen. I may have seen bone--there was a spot of white--so I brought her in. It wasn't broken and no tendons severed so they cleaned it a little more and sent us on our way. It looks really awful. No stitches I think because it was too swelled and not enough flesh to stitch. I've never had a strong stomach but thought after all the surgeries I have had that I would be a little tougher, but this one was a little much for me. I held it together but . . .I decided Kyle might have to take care of the daily rebandaging of this one!

It's been a year. . .

since Kyle and I said our good-byes. A year ago today I had a complication a day after a shunt surgery and we both thought I was going to die. I rather suddenly had incredible pain in my head that pain meds couldn't touch. It was a horrible time of incredible pain and tearful good-byes as I tried to give a few messages for Kyle to pass on to those I love. Facing death tends to refine you. I remember little about the time, but I do remember Kyle holding my hand and periodically reading to me from the Psalms. . . the only real comfort that I had.

I am thankful to be able to look back at that day and a few others that we thought may be the end and know that I am still here. The Lord has a plan for my life--a plan for each of our lives. I am thankful that I am still a mom to my kids and a wife to my faithful husband. The Lord has blessed us.

And Kyle tells me that it is a Saint Patricks Day that he will never forget.

Sabbath

Another day of rest has come and is nearly gone. How quickly time seems to be going by.

Well, Friday was a big day and I didn't feel so good Saturday. But today has been better again, so that recovery period isn't too bad. So what did I do Friday? I worked for 2 hours at the office, drove to Sioux City, had lunch with my sister while my van was worked on, drove home, rested then had supper out with a few friends. Our oldest daughter also had two friends overnight for her birthday. Not an exceptionally strenuous day for the normal person, so Kyle had to laugh a little that I had really accomplished very little but needed a day to recover. But the other side is that I actually did all of those things and a few months ago I never would have been able to do that much. So I can't measure my accomplishments by what others can do but by the tiny steps I continue to take in the right direction.

The Lord has blessed us so much. We have had a tough time, and had significant challenges. But God has been so good to us and provided the grace and strength each day in the exact measurements that we have needed. If I didn't know with all my heart that God is in control, that he has planned this difficult time for my growth and time of testing, I don't think that I would have made it. I really don't know how a person that doesn't have a sincere faith in the Lord can deal with the things that we have endured. He didn't make it easy for us, but he didn't promise easy. He did promise to be with me every step of the way, though, and what a comfort that is.

Accomplishments big & small

I actually drove myself to Sioux City and back today--about 45 miles each way. This is the first time that I remember over the last year or two that I have done that. I am thankful it went well!

The other accomplishment is rather funny but I am excited that my toenails are growing again. They really stopped growing for at least the last year. I guess my body was putting all of its energy into just getting better and now it has a little more energy on the side to do the menial things like growing toenails. :) I noticed about a month ago that my hair is also beginning to grow a little faster--back to normal. So I guess these things are small signs that I am getting better. Praise the Lord!

Holly

A person named Holly commented on my blog. If you are reading this, I would enjoy having you email me! You are the first person that I have found that have both chiari and intracranial hypertension. My email address is in my profile.
Thanks!

Tuesday

My head is still doing pretty well. I am so enjoying the moments of feeling fairly clear during the day. I am still quite exhausted by night time, and of course my head doesn't feel as good as evening arrives.

The rash is a bit of a mystery. The dermatologist told me that it is an infection but the lab results came back negative, so now he isn't sure what it is, either. I think that I will wait and see if it starts getting better as I continue to apply a medication to it twice a day. It is really very minor in the scope of things, but a bit irritating. My lower back is the worst, but I have a few spots on my legs, stomach, arms, and have occasionally had one on my face and in my mouth. Gr. . .

Saturday

The busy days continue, but I am doing ok. I am very exhausted by the time I get to bed, but I am making it through the days with several rests in the chair interspersed through the day.

My sister Renae moved to town this weekend. Everything went quite well although I wish that I was able to help more than I can. Someday I hope that I am able to do more so I can be of more help. But a day at a time.

My head has been staying pretty steady lately at a very tolerable level. My ears ring all the time yet but I am tolerating noise a little better I think. I am so thankful to be at the point that I am. I long for more, yet when I think about where I came from I am amazed that I am doing this well. What a blessing it is.

Have a blessed sabbath.

busy days

The new muscle relaxer seems to be working pretty well, so I will probably try to get a prescription for that one.

The days seem to be so busy lately. Kyle has had lots of church meetings lately. We had four parent/teacher/student conferences last night. Tara had her ears checked again and they are looking pretty good! (What an answer to prayer!) She had a little "negative pressure" in one ear, but no holes, fluid or infection. At this point we will just wait and see what happens.

I finally saw the dermatologist today in SF. Evidently I have an infection that is causing the rash and sores. Probably should have checked it out a few months ago, but now is better than never. So hopefully I can get that cleared up. I didn't think to ask but I am now wondering if an infection may be somewhat delaying my regaining of strength? Probably not, but I can always hope that there is a reason that can easily be resolved and I suddenly become strong again!