Today was better then last night but I am feeling quite exhausted again this evening. With the shunt adjustment comes a time of adjustment for my head as well. It takes a little while to become accustomed to a different level of pressure in my head, so I don't feel as good and feel like I am out of balance. They usually say to give it a week and it hasn't been much over 24 hours now, so hopefully this will ease up as the days go by.
The Lord has been faithful to us. Sometimes it seems overwhelming to think about dealing with this indefinitely but then I realize that I am lacking faith. God has a purpose through it all and will carry us through during the good and the not so good. So we will take it a day at a time and keep working on trusting Him to take care of the details. Thank you for caring!
Tuesday, September 29, 2009
Monday, September 28, 2009
Dr appointment
Well, I have "graduated!" I don't have a scheduled visit with any doctor right now. Wow!
Today I met the neurosurgeon. It was as I expected. He was very kind, but really had little to add. The headaches are mild and holding fairly steady so he basically said we won't worry about it until or unless it becomes intolerable. He said that he really doesn't have many tools in his aresenal to treat this besides adjusting the shunt and surgery, which I knew. So we will keep praying that things stay ok. Today he did adjust the shunt open one more notch, which reduces the pressure in my head a little more. This is the most open that he dares to go, and it is a little risky. He thought about it for a while and finally decided that we could try it. The only way we will adjust it open any more would be if we are desperate. This setting is just below the "normal" settings. Again, we will live day by day and appreciate each good day that we are given.
Today I visited the hospital and went to the wing that I stayed in most of the time. It was overwhelming and a bit emotional for me. I saw some of the nurses that cared for me, which was fun, but it brought back some of the emotion of feeling trapped there. I so longed to come home without really understanding how sick I was some of the time so seeing it all again was a little hard.
The pain in my right side continues on and off, particularly after I eat the "wrong" things. Tony, I will probably ask you some questions soon but at this point I am pretty sure it isn't my gallbladder because they took it out along with my appendix as a preventative for future infections this summer when they had my abdomen spread open. The pain isn't right in the middle but middle right under the bottom of my rib. Since it is food that causes the pain the doctors believe that it is the pancreas still acting up but the tube from my shunt is draining in the area around my liver so that could also be causing some irritation as well.
Well, I am so tired I can hardly sit in my chair right now so I will head to bed and answer a few emails hopefully tomorrow!
Today I met the neurosurgeon. It was as I expected. He was very kind, but really had little to add. The headaches are mild and holding fairly steady so he basically said we won't worry about it until or unless it becomes intolerable. He said that he really doesn't have many tools in his aresenal to treat this besides adjusting the shunt and surgery, which I knew. So we will keep praying that things stay ok. Today he did adjust the shunt open one more notch, which reduces the pressure in my head a little more. This is the most open that he dares to go, and it is a little risky. He thought about it for a while and finally decided that we could try it. The only way we will adjust it open any more would be if we are desperate. This setting is just below the "normal" settings. Again, we will live day by day and appreciate each good day that we are given.
Today I visited the hospital and went to the wing that I stayed in most of the time. It was overwhelming and a bit emotional for me. I saw some of the nurses that cared for me, which was fun, but it brought back some of the emotion of feeling trapped there. I so longed to come home without really understanding how sick I was some of the time so seeing it all again was a little hard.
The pain in my right side continues on and off, particularly after I eat the "wrong" things. Tony, I will probably ask you some questions soon but at this point I am pretty sure it isn't my gallbladder because they took it out along with my appendix as a preventative for future infections this summer when they had my abdomen spread open. The pain isn't right in the middle but middle right under the bottom of my rib. Since it is food that causes the pain the doctors believe that it is the pancreas still acting up but the tube from my shunt is draining in the area around my liver so that could also be causing some irritation as well.
Well, I am so tired I can hardly sit in my chair right now so I will head to bed and answer a few emails hopefully tomorrow!
Wednesday, September 23, 2009
Wednesday
I have nothing new to report, which is a good thing I think! My headache is staying pretty steady at very tolerable. I hope and pray it stays like this! The pancreas is still bothering me. Yesterday morning I had an episode that was a little scary. I suddenly had extremely intense pain in my right side where the pancreas is. It came on very quickly and lasted maybe 30 seconds and then receded. It totally stopped me in my tracks and I was alone at home which scared me a bit since I couldn't move. So I don't know what that was, but this pancreas issue is getting a little old. I am longing for a good ole steak and some mexican food! :)
Friday, September 18, 2009
Another week
Time keeps passing. . . I feel like I say that over and over! :)
My mom reminded me that I am getting better because I am starting to see so many projects around the house that need to get done. I was expressing frustration that I just can't seem to get these things done and she reminded me that this is a very good sign because a few months ago and before with headaches, I couldn't think well enough to figure out what needed to be done. My sisters were checking the kids' clothes because I didn't have the where with all to figure out what they might need or what they had grown out of. So I may not be getting many projects done, but I am sure seeing them! :) My poor, poor husband. :)
My head is still doing pretty good although not quite as good as it had been. Maybe we can have the shunt adjusted open a little more when I go the end of September. I am a little nervous about that because the more that it drains the more likely it is that my brain will collapse on the tubing. We don't need that because that would then mean another surgery--yuck! So we will see what he has to say. It is still very good yet, though. I can think, listen to music, etc. It would be "interesting" to experience this headache in another time of my life just to see what I "normally" would think of it. I really think my pain tolerance has gone through the roof. I had a tetnus shot a month ago and I remember last time I thought it was achy and uncomfortable. This time I didn't notice it. The same holds through today--I had a flu shot and they warned me that it would probably ache for a few days and I am not feeling anything. Kind of funny. That is a very good thing, I guess!
My mom reminded me that I am getting better because I am starting to see so many projects around the house that need to get done. I was expressing frustration that I just can't seem to get these things done and she reminded me that this is a very good sign because a few months ago and before with headaches, I couldn't think well enough to figure out what needed to be done. My sisters were checking the kids' clothes because I didn't have the where with all to figure out what they might need or what they had grown out of. So I may not be getting many projects done, but I am sure seeing them! :) My poor, poor husband. :)
My head is still doing pretty good although not quite as good as it had been. Maybe we can have the shunt adjusted open a little more when I go the end of September. I am a little nervous about that because the more that it drains the more likely it is that my brain will collapse on the tubing. We don't need that because that would then mean another surgery--yuck! So we will see what he has to say. It is still very good yet, though. I can think, listen to music, etc. It would be "interesting" to experience this headache in another time of my life just to see what I "normally" would think of it. I really think my pain tolerance has gone through the roof. I had a tetnus shot a month ago and I remember last time I thought it was achy and uncomfortable. This time I didn't notice it. The same holds through today--I had a flu shot and they warned me that it would probably ache for a few days and I am not feeling anything. Kind of funny. That is a very good thing, I guess!
Monday, September 14, 2009
Moving on
Ok, I had to get past a few things last week and am determined to move forward. I really am, too. I just have to remind myself of that. Sometimes people see me for a short time and assume that I should be back to normal because I seem normal for those moments. Then I get frustrated because if they think I should be back to normal, I really should. I try to do too much then get stopped and am miserable. What a windy road we walk sometimes.
I decided on Thursday that I am done with hats. My hair is about 1/2 to 3/4 inch long now and mostly covers the incisions in the front. I even went to church without a hat this Sunday for the first time I think since December. Wow! I must say I feel like I forgot to fully get dressed when my hat is missing, but it is so nice not to have it on. When I am around people that don't know me I still get double takes and looks, but I guess I did when I had a hat on, too.
Since I have enjoyed the Psalms so much I am doing a study on the Psalms of Ascents, and that has been so good for me. The Lord has been so gracious and patient with this impatient woman that lacks faith even though He has been so faithful to me. I pray that my faith continues to grow through the trials He has set before me.
I decided on Thursday that I am done with hats. My hair is about 1/2 to 3/4 inch long now and mostly covers the incisions in the front. I even went to church without a hat this Sunday for the first time I think since December. Wow! I must say I feel like I forgot to fully get dressed when my hat is missing, but it is so nice not to have it on. When I am around people that don't know me I still get double takes and looks, but I guess I did when I had a hat on, too.
Since I have enjoyed the Psalms so much I am doing a study on the Psalms of Ascents, and that has been so good for me. The Lord has been so gracious and patient with this impatient woman that lacks faith even though He has been so faithful to me. I pray that my faith continues to grow through the trials He has set before me.
Wednesday, September 9, 2009
whining
I was so down yesterday. It seems like this just never ends and I so long to be healthy. I think a variety of things hit yesterday including a long holiday weekend with extra activities, wrong food and continuing weather fronts coming through. My side hurt, my head hurt and I was just sick of it. When those things happen, of course everything else looks worse than it is. I become so overwhelmed with everything and it just seems like there won't be an end or "resolution." Of course, life is complicated with four children and a business to run. Then the loneliness sets it and I can just get myself into quite a downward path.
Thankfully today my side isn't hurting as much and my head is feeling better which helps me to put things into perspective. It could be so much worse--and has been!
Thankfully today my side isn't hurting as much and my head is feeling better which helps me to put things into perspective. It could be so much worse--and has been!
Friday, September 4, 2009
Another week nearing a close
Time just keeps marching on! I just can't believe that it is Labor Day weekend already!
I am doing about the same. By today I was more tired after working mornings this week. It seems to just wear me out. My long incision is still bothering me, and I am noticing it more as I wear pants and jeans that rub against it instead of the sweatpant material that is much softer that I have worn more since coming home. It is still a thick scar and very red. The others seem to be looking better and fading a bit. The rash has improved although it is still there. I think it will probably just keep improving with time.
This time of year does concern me a bit. The last three years I have declined rapidly during the later fall season so I am praying that this fourth fall dealing with these problems will go much better. I don't dwell on it but it is always in the back of my mind that things could deteriorate again in the next month or two. That scares me to think about it but yet I know that the Lord will give me and our family the strength to deal with it if that is His plan. He has been so merciful to us already.
I am doing about the same. By today I was more tired after working mornings this week. It seems to just wear me out. My long incision is still bothering me, and I am noticing it more as I wear pants and jeans that rub against it instead of the sweatpant material that is much softer that I have worn more since coming home. It is still a thick scar and very red. The others seem to be looking better and fading a bit. The rash has improved although it is still there. I think it will probably just keep improving with time.
This time of year does concern me a bit. The last three years I have declined rapidly during the later fall season so I am praying that this fourth fall dealing with these problems will go much better. I don't dwell on it but it is always in the back of my mind that things could deteriorate again in the next month or two. That scares me to think about it but yet I know that the Lord will give me and our family the strength to deal with it if that is His plan. He has been so merciful to us already.
Tuesday, September 1, 2009
Progress
I feel like I can say that I am making progress! I have been working mornings at the office the last few days. It is still very overwhelming but I am thankful to be moving forward. I can honestly say that I am not "as" exhausted by things as I have been--or at lest not as frequently. I still get pretty wiped out quite regularly.
My kids are through their first week of school and it seems to be going well for all. Tara particularly is thrilled with school and she wishes she could go every day like her siblings. That will come. Be careful what you wish for! :) I remember wishing that life would slow down, and did it ever! Not really what I had in mind!
The eating is improving. I ate a little bit of beef roast tonight, and while it made me a little nauseated, it wasn't terrible. Progress!
My kids are through their first week of school and it seems to be going well for all. Tara particularly is thrilled with school and she wishes she could go every day like her siblings. That will come. Be careful what you wish for! :) I remember wishing that life would slow down, and did it ever! Not really what I had in mind!
The eating is improving. I ate a little bit of beef roast tonight, and while it made me a little nauseated, it wasn't terrible. Progress!
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