We are in Milwaukee

We made it. We took a different route this time on 20 instead of the interstate. It was a beautiful drive but a little longer.

This was a day of firsts for this trip. Every other trip to Milwaukee we first stopped in RV hospital for pain meds by shot to helpe me make the trip and I didn't need that this time. My head did pretty well. Kyle actually had someone to visit with on the way here--otherwise I was zonked or in total misery. My head did remarkably well today although I am starting to feel it now. My stomach did pretty well but it is pretty painful tonight.

The surgery is tomorrow at 11:30 and I am looking forward to having this done and hopefully move forward with life. I am really sick of dealing with medical issues!

A baby born and time ticking down

My sisters baby was finally born yesterday afternoon! A sweet little boy--that wasn't so little! Fully 9 lbs and 19 inches long, they named him Kayden Dean. We are so excited for Tami and Jeremy! My baby sister is now a mommy, too, and so excited and happy. I am so happy for the new joy in their lives--what a blessing.

In our home, the last bit of laundry is getting done and the kids are getting packed. The best part about this surgery is that I am feeling well enough to get these things together myself. All the other surgeries I haven't been well enough to think through what needed to be done (& couldn't move around well enough to do it) so Lisa or one of my sisters would come and pack up the kids and sometimes even pack me up. My wonderful sister in law, Lisa called this morning to ask if I would like her to stop to pack up the younger kids this morning and it was so nice to be able to say that I was going to be able to do it this time. :) Hopefully I will do as well as they have done.

A few details

I am officially preregistered, although that is becoming a bit laughable as well. When the nurse pulls up my file they see how many times I have been in and really find they don't have to ask me much and there isn't much new to tell me since I have been through the routine a few times.

The surgery is scheduled to last an hour. I will be in recovery for about an hour and then in a room for a few hours until I am doing well enough to depart. I told the nurse that I hoped to skip out of the hospital but she thought that might be a little optimistic :) although she agreed that this surgery should not be as major as my last several. I have to smile at what my neurosurgeon might think about having to do an abdominal surgery. No big deal? A step down since he is used to dealing with the brain? A change of pace? Doesn't matter really, but little things tickle me sometimes.

Quiet

I have been a little quiet. This week has been going well overall. My abdomen is hurting but not as severely as the previous week. My headaches are still in check. I am so thankful for these things! Life is far from normal but the closest to normal that I have been for a very long time.

Surgery is Monday and I am looking forward to having that done. I am optimistic that the surgery will go well although mentally prepared for whatever can happen. Compared to all the surgeries fooling with my brain this seems like a walk in the park. I jokingly told Kyle that I think I might be able to skip out of the hospital this time. :) That might be a big exaggeration but it sounds nice! Our hope is that I will have the surgery Monday morning, stay overnight there that night and we hope that we will be able to drive home Tuesday. We'll see how I feel, though.

Happy Birthday!

We are celebrating two birthdays today. My oldest son turned 14 today. How can that be? Where does the time go? It has been a big week for him. . . he turned 14, had his last day of 7th grade and had his braces taken off. I still remember the day he was born like it was yesterday and now he is nearly as tall as I am. My son, I love you so much!

Today a very dear friend, Mary, turns 40 as well. Mary, I know that this day is a day to celebrate and yet moving into another decade is a bit daunting. Remember, I am following you to this milestone in a couple months. :) Mary is a true and dear friend. We have been friends since our college days and she has been there for me over the years, particularly through these last difficult years. Thank you for always reading my blog, writing me frequent emails and notes, bringing me meals, treats and all the other kind things you have done to encourage me. You have been a true friend through thick and thin. I pray that you have a wonderful birthday!

A quick note about myself--today so far has been the best day I've had for a few weeks. My head is a little clearer and my abdomen isn't hurting as much. :)

Theological hurts

Sometimes people mean so very well and yet things can hurt so much. It seems that I periodically run into the idea that if I pray hard enough and believe in Jesus enough that I will be healed. The opposite of that, of course, is that I must not because I am not healed. It hurts when people talk to me about praying more and believing more and being confident that if I do that I will for sure be healed. Certainly that is never intended by the very well meaning people that talk to me about this, but it is hurtful all the same. Perhaps I shouldn't even write this here because I really don't want someone to read this and be offended or hurt by my words. But over the years I have heard this multiple times and each time I have to work through a grief process and then remind myself that this really isn't a Biblical concept and I have to let it go. One very clear example in the Bible is Paul when he requested that God remove a "thorn of the flesh" and he was denied. God said no--and I don't think it was because Paul didn't have enough faith, didn't ask sincerely enough or didn't pray enough about it. Sometimes the Lord chooses to answer yes to our prayers and sometimes He chooses to answer no. The hard part is accepting the no. Please never hesitate to talk to me about your faith and confidence in God! I just need to be clear that we have accepted that the Lord may heal me and His answer may be no. It isn't an easy thing to accept, and we continue to plead with Him for healing but yet we know that we don't always get a "yes" and that His plan may be altogether different then ours. Ok, now I will get off my soapbox. :)

Ascension Day

Today we celebrate the Ascension of our Lord. My family is at church tonight but I was not able to go this time.

This hasn't been the best day. My head is hurting more today and my abdominal pain isn't letting up at all.

I am adding a picture of the wonderful people in our office for two reasons. First--they are just awesome! They have taken such great care of our clients, been trustworthy and extraordinarily supportive! Second, I have had some people ask me to post a picture of me with my wig and this is the only picture I have with it on. Since it presses on the tubes that run behind my ears from the shunts I am not able to wear it long at all. From left to right there is Joyce, Michele, me and my husband Kyle.

Wednesday

I had my pre-op appointment and I think I passed. So much repetition since I have done this over and over again, but the clinic is so kind and gracious in taking care of me again and again. I've decided that medical clinics, hospitals, doctors and neurosurgeons should have something like frequent flier programs--I would certainly have earned a lot of points! But I'm not sure what the points should earn--illness seems to take the joy out of a lot of things that would normally be considered fun and enjoyable. Oh, well. Hopefully I will get off the "frequent patient" list in RV and Milwaukee and become the normal person that goes in for a sore throat every couple years. Not likely, but it really sounds nice!

My headache continues to be bothersome particularly to noise, but I can still think and handle the smaller everyday noises. Could it be that this new drug is helping? I dare not hope to much but it seems to be a slight possibility. My stomach issue seems ridiculous compared to my head but still causing me significant problems. My walking down the street is done. There are times I can move better and times it hurts to breath because it makes my stomach move. What a silly problem in the scope of what I've been dealing with, but very real all the same.

I really don't remember what normal life used to be like--running around with the kids, doing errands, cleaning, gardening, riding bike with the kids, playing games outside with them. I don't think they remember what it is like to have a normal mom either. I think of the Israelites wandering in the desert for 40 years and I think my 3 years of wandering through my personal desert. 40 years is a long time! Three years have seemed like a lifetime.

Monday

"Be still and know that I am God." I have decided that I really need to focus on this and remember that although I don't understand why I am going through this that God does. Not an easy thing, by a long stretch. Sometimes I am depressed, sometimes angry, and sometimes I can accept it. I really do long for an end to it all, though.

The surgery is scheduled for June 1 in Milwaukee at 11:30. I am having my pre-op appointment tomorrow so if there are any cancellations they will call me and I will have it done earlier. I won't actually be awake--which is a relief to me after I have had time to think about it. I won't go under general anesthesia--for which I am thankful--but they will make me drowsy and forgetful. It sounds to me like Versed (sp?) which is a drug that I appreciate. I spoke with the nurse from Rock Valley today and they were not able to get a local neurosurgeon to do the surgery for me. I have to many problems so not too many want to touch me with a 10 foot pole.

My lower abdomen has gone into rebellion. I am having more pain in my stomach the last four days then I have ever had--and it is pretty constant. If I had to choose between head pain and stomach pain, though, it would be hands down stomach. It can hurt like crazy sometimes but my mind still works. The headaches are still bothersome but don't seem to be progressing much. I started the new drug Friday night and I hardly dare hope that it is holding them in check. It isn't gone but just not progressing. I will continue living and dealing with it one day at a time.

Saturday

I took the first dose of my new med last night and so far it hasn't produced any bad side effects. The doctor started me on a very low dose in hopes of avoiding the problems so maybe that is helping.

Today we went to the Tulip Festival parade in the afternoon. I was concerned about the logistics but Kyle was able to drop me off not so far from the parade route with chairs. Afterwards we walked across the street to the park and I sat in my chair while Kyle took the kids on a ride. I had earplugs in so the noise was controlled enough to make it all workable. I've had a couple days of stronger abdominal pain again so that has been not so nice but the headaches aren't getting worse.

neurosurgeon news

I spoke with the neurosurgeon today. He does think that the tubing may be causing the problem with the lower abdomen and is scheduling "surgery" to cut it shorter. I hesitate to call it surgery because it sounds like they can keep me awake, open up the incision between my ribs and pull out the tube. Then he will cut it short and sew me back up. Can't say I would want to watch, but sounds pretty simple. I like simple! He was open to me having it done locally, which I will check into, but my guess is that a local surgeon won't want to take this on.

He is going to have me try one more drug that is known to effectively treat the Intracranial Hypertension. Unfortunately, I took this drug once before at the very beginning of the headache treatments and was not able to tolerate the drug but I told him that I was more then willing to try again. I have taken so many thousands of dollars of drugs over the last few years since trying the drug, so I will give it another shot--maybe I will tolerate it a little better this time.

Finally, I asked him about consulting with a ns in Ohio that I have heard a little about. He suggested instead that I see this doctor to see if there is any additional work that can be done for me. The Ohio doctor reportedly has done some research into this disorder so perhaps he would have another idea. I am honestly reluctant to go to yet another doctor--I am so weary of all this. I have an appointment scheduled with this new doctor in July, though, so we will see. . .

Wednesday

Today I have appreciated not being nauseated.

I continue to walk, do little exercises, avoid caffeine, and take Relive--a food supplement. I am almost through that supply and am going to quit taking that and move to good vitamins. Truly I am doing all that I can to strengthen and take care of myself. I have also learned through this process that deciding to be better, being optimistic, ignoring pain and trying to go with attitude just doesn't make much difference when the health issue is debilitating. I'm sure it doesn't hurt, but I cannot will myself better. Maybe that sounds silly but sometimes I think people may think I like being sick or that if I would just toughen up it would be so much better. It just doesn't work that way. I don't spend much time worrying about what others think but that does cross my mind sometimes as this stretches on and on. I would just love to be fine and disappear into normal life with absolutely no attention. I would love to bring meals to others and serve others in other ways and I hope someday I will be able to do those things again. Thank you for being so patient with me until I get there!

Tuesday

I gave up the 2nd drug that was causing the nausea with the last one taken on Sunday. So now instead of the big "3" issues, I am down to two. The nausea is gone and I feel like I can eat again. I had really hoped to stick it out with the drug, but it seemed that the longer I was on it, the more severe the nausea, etc., became so we finally decided that we had had enough of that. I made it nearly 2 weeks on the drug with the last week at a half dose (and double the nausea!).

The headaches aren't terrible yet, but I think I am starting to get that headachy look again. I really hate that!

We are still waiting to hear from the surgeon about the tubing in my abdomen, but I am fairly confident that it is still what is causing the pain there. That is still very on and off with it being worse during or after activity like walking or leg excersizes.

I am discouraged with the headaches. What else can I say? It is overwhelming to think about going back into the pain again. I can still think but knowing what may be coming again is something I can't let myself dwell on right now.

Here we go again?

I did make it to church last night but ended up needing earplugs and left right after. The noise is definitely becoming a problem. The headache this morning has intensified quite a bit. I'm not sure how I can do this all over again. Lord, please give us strength.

18th Anniversary & Mothers Day

We have been married 18 years today. Wow!

I have been able to go to church quite a bit but didn't go this morning. The nausea is just too strong. That seems to get a little better as the day goes by so maybe tonight will work. Tara is not feeling well, so she is keeping me company at home this morning.

Saturday

I have improved a little although I am still struggling with the big three--nausea, abdominal pain & headache. The doc didn't call yesterday so I don't have news there. Yesterday I decided that maybe I am being a wimp with my stomach so I did leg exercises but that was a mistake--my lower abdomen really hurt after that.

The family is slowly getting better. Tara has a touch of it but she is pretty tough and doesn't seem to notice it much until her temp really goes up. Kyle & Riley still sound congested but feeling a better. I have some congestion and have probably been running a moderate temp but that isn't a big deal so far. So I think the "plague" is finally making a slow departure from our home.

Rough day

Yesterday was a rough day. I woke up around 4:30 in pain with a triple whammy. Major nausea, strong pain in my stomach & my headache was much worse. An anti nausea med helped with the first and the rest seemed to improve a little as the day went by, but it really wasn't a very pleasant day. I was well enough by evening to go to the older kids' piano duet recital but I was pretty wiped after that.

Today seems to be starting better.

How am I doing?

I think the question about how I am doing is the most common question asked, and mostly asked very sincerely. So I thought I would try to answer as well as I can.

Right now I am probably overall doing the best I have been since January. I am gaining strength. My headache continues to be tolerable. The headache is probably a more bothersome headache for most people but I can deal with it and as long as I stay away from noisy situations and keep the tv volume quite low I can have that on in the room. My stomach can feel just a little achy but very livable and it can become painful enough that I can barely walk--all throughout each day. The ringing in my ears is becoming louder. Sometimes it amazes me that others can't hear the whistle that I am hearing. :) The new medication has started making me more and more nauseated and causing some gi problems so I am going to try it at half a dose to see if that is more tolerable. I am willing to stick that out b/c I can still eat parts of the day and it isn't as intensely nauseating as the med I had to quit.

My attitude goes up and down. I really try to focus on staying positive and remembering that God is fully in control. However, even though my strength is improving, I can probably only do about as much during my full day as I did pre-illness in an hour without thinking about it. So my best since January isn't all that impressive in comparison to the normal person. That can be highly frustrating and then depressing. Sometimes I think that when I am doing "better" I get more frustrated because I can think and see what I can't do. Today Kyle went away for a show for Pizza Fresco that we had hoped to go away to as a family for our first time away in a very long time. I had looked forward to a family time so much but last week we knew that there was no way that I could handle the trip so he went alone.

So I continue to work hard on living day by day, taking walks--now to the end of the block and back--and doing what I can to get stronger. I am guessing I will hear from the ns on Friday. Thank you for reading today.

x-ray

I had the xray done today. My very untrained eye leads me to believe that the most recent shunt tubing is not bothering me because it went down to the incision and then sharply veered to the right. However, the first shunt tubing used to loop down into the pelvic area and then about halfway back up my abdomen. Now it looked like it is mostly coiled down in my lower abdomen/pelvic area right where I am having the pain. So I think I can see what is causing the problem but I am far from a doctor so we will see what he has to say when he sees the results. We will be mailing it tomorrow.

It seems like the headache continues to bother me just a little more. We continue to live day by day. The Lord's grace continues to be sufficient each day and that is all we can ask for.

Kylie and Kyle were sick again today and Riley dropped tonight. Tara was complaining a bit when she went to bed. They went to the doc today while I had my xray and they don't have the swine flu. :) It is a nasty virus, though, so you might not want to visit our house right now!

Sunday

I am so thankful that I was able to attend church twice today. It wasn't as easy today as my lower abdomen is hurting more and my head is bothered more by the noise. Also, about half my family is sick! Tanner started the whole thing the end of last week and Kylie picked it up and can't seem to shake it. Now my poor husband is feeling quite miserable. They all run a temp around 101-102 and have the respiratory stuff particularly in the chest. We are hoping everyone starts getting better and would prefer if I don't get it! Coughing and sneezing is starting to hurt my head more again. Also, I thought Tara had pink eye but now I am thinking it might just be the cold settling in her eye. We'll see how she looks tomorrow. What a bunch of sickies we are!

Yesterday was a busy day. For the most part I watched Kyle & Tanner plant the garden--oh how I hate not doing it myself! I got a couple things in but I am thankful that Kyle doesn't mind doing these things. Our garden is small--postage stamp size. We grow just enough to eat and share a little but we all love it. This year we have tomatoes, potatoes, yellow squash, cucumbers (my favorite!), beets, onions and brussel sprouts.

Before this illness began plaguing me I was the type of person that had a hard time sitting in one place for long. I rarely sat to watch tv b/c I always had to much I wanted to do. What a dramatic change my life has taken!

ok

Yesterday and today haven't been the best days again. The headaches have stepped up a notch and my stomach continues to plague me. It is hard to say what is happening. I started a new drug Wednesday night and also doubled the dose of the drug I started the week before. Both of them are considered "preventatives" so we will see what they will prevent. The good news is that although I am more nauseated I have been able to eat. I haven't been taking sleeping pills for a few weeks and that has gone well although I am starting to wake up earlier again b/c of some pain.

I will probably be having an x-ray of my abdomen next week to see where the tubing is. The ns ordered it but it hasn't been scheduled yet. He called to discuss things today and when I recognized his voice immediately he laughed and said that it isn't a good sign when you know your neurosurgeon's voice right away on the phone. I told him that I am really getting sick of this (nicely) and that I was ready to be done with it. He jokingly said that I should have told him that a long time ago and he would have just taken care of it then. More seriously, I asked him why this continues to plague me and he said that I am a very unusual case that just does not respond to normal treatments. I asked him if he wished that he had never heard my name and he said that he actually was very glad that he has been able to work with me. I think that I am presenting a challenge for him.

I so very much long for normal life, with normal problems and normal busy times and labors. Normal probably doesn't exist for anyone but we are so far from it and I wonder if we will ever get near to it again? I really do believe that the Lord is leading us down this path for His best purposes but I don't think I will every understand what His best purpose is in this. I guess I don't need to, but I so long to resume my old life. For now I continue to pray for strength and courage and try to focus on the many things that I have to be thankful for.