Monday, November 9, 2009

It Could Be

It could be worse

Yeah, but right now it’s pretty bad to me.

Never compare two people’s levels of pain, despair, sorrow, hurt ect….

There is just no way to compare.

I wish more than anything I could say that my head feels great and that I feel like going out and jumping right back into life, but I don’t.

I know that the people in my life mean well but trying to push me into going and doing when to sleep and telling me I don’t need to take this and that medication is well….not helping. Frankly, it’s hurting.

A big part of it is they want the “old” Brandy back. Well I do too. But I am not so sure that will ever happen. What if it never happens?

Everyday I wake up and pray that today is the day. That today will be the day my head decides to behave and not hurt. I have had an ongoing excoriating headache for almost a solid year. Yes, there have been breaks in the pain but those are few and far between. Now, just stop for a minute and place yourself where I am. In that one year, four brain surgeries, meningitis, hospitalizations, E.R. visits, blood draws, C.T. scans, spinal taps, PICC line, the list goes on. I have missed soccer games, volleyball games, awards days, field trips. The list goes on and on.

Today is my birthday……

What do I wish for? What do I want for my birthday?

I have a very simple wish and want this year.

I want to be pain free.

But what I really want;

I want to wake up everyday and my head not hurt.

I want to not have to take any medication, not even a vitamin. I only want to have to see a Doctor for a yearly physical or maybe just a nasty cold. I want my long hair back and these scarves and wigs thrown away. I want the scars on my stomach and arms to be faded away. I want to be able to sleep like a normal person without the help of a sleeping pill.

Above all, all I really want for my birthday is what and who I used to be. I am just not sure that will ever happen and maybe it is time to start to acknowledge that and learn how to cope with who the new me is.

So Happy Birthday to me and here’s hoping that 31 is a heck of a lot better than 30!

I found this quote and thought it was something to ponder.

“When life veers from the course you had planned out, re-evaluate your priorities and maybe you’ll find that what you have is better than what you had planned”

Tuesday, November 3, 2009

Number 4

Number 4

That’s right number 4. This is the fourth surgery I have had since March. I am beginning to become an old pro at this. If that is at all possible.

This surgery was a little different in a few ways.

For one thing, this time they put the shunt on the left ventricle on the upper left side of my head whereas in the past surgeries they had placed the shunt in the right ventricle in the lower right side of my head. The reasoning for this is there has been so much trauma to the right ventricle and it basically is becoming harder and harder to go in on that side. I have tiny ventricles to begin with so the extra trauma is not helping. Typically they (neurosurgeons) do not like to go in on the left side because it is a more complicated surgery and poses more risk. What are those risk you ask? Well to be honest, we never asked. LOL. It had to be done and frankly in this situation I would rather be ignorant.

The seconded thing that was different was that Wes could not be there. He had flight training and well, unfortunately the last day of training was on Friday. He would finish up his training in Charlotte and drive to Baltimore.

I was also surprising clam going into this too. Heck after four surgeries in less than a year you tend to become rather calm about the whole matter. Mom and I drove up the day before and Dad flew in. I did not sleep much the night before but was ready to get going.

Pre-op seemed to take forever. This time I had an extensive meeting with Anesthesia. During my last surgery my jaw locked up and my mouth clenched tight causing problems with airway tubes. This can be as a result of repeated surgeries and being put under anesthesia many times. We were told for future surgeries to let the Anesthesiologist know about this so that they could be prepared to deal with it if this should happen. To try to prevent this from happening they used a different type of medication to put me to sleep and as a caution had equipment in the operation room that they would need just in case. By the way, my jaw did not lock up and the Anesthesiologist did come by to check on me two days later, (I thought that was impressive because she certainly did not have to, in fact this is the first time I have ever had one check on me afterwards) she said that because they had the information of what had happened last time they were able to use different medications and that helped prevent an ugly incident. She was very nice.

So a big hug and kiss from Mom and Dad and off I went.

The next thing I know I wake up from surgery and OH MY @%#^@%^!!!!!! I have never felt pain like that before in my life. Between my neck and my head I am not sure what hurt more. Apparently, one reason that they do not like to do shunt placement on the left side is because it involves a lot of tunneling in the neck. Um yeah. I can attest to that.

As for the pain, they were doing a really horrible job controlling it. Let me remind you all that these days I see a Pain Management Doctor and with that I have simply graduated from most simple types of pain relief. They had me taking something right out of surgery that I already take at a higher dose three times a day every day. Now I am not a Doctor and do not claim to be one but HELLO!!!!!!! This will not work. So needless to say my first night after surgery was horrible. So Wes (he got there Friday night around 10) asked nicely about finding something better to control the pain, when that did not work he had to get firm about it. Finally I had relief. Well, as much relief as could be expected.

To be honest much of Friday thru Sunday is mostly a blur. Between the agonizing pain and the medication I just do not remember much. My in-laws were in Pennsylvania visiting my brother-in-law and his family and heading home so they stopped by for a brief visit which was wonderful.

Overall I have to say that I am somewhat disappointed with the aftercare this time around by my Doctors and Sinai. My pain management afterwards was less than adequate. My Doctors knew what my current medications where and did not seem to take that into account. I also had a Nurse Practitioner from you know where come by to see me on Monday morning. She walks in, never telling us her name and says “Okay your times up, time to go home”’. Ummm I don’t think so. That was not the only thing about her that hit me wrong but I think will refrain from discussing it further. Let’s just say a call was made to Dr. D’s office that she was to never set foot into my room again.

I guess the most disappointing thing about the aftercare was that we had to call Dr. W and Dr. D’s office to see if they were going to come see me before discharge as by Tuesday neither of them had. I did see Dr. W and he does not want to see me again until mid December or early January. I have yet to see Dr. D. Even going up for my post-op appt she had an emergency surgery and I had to see her PA. I know that cannot be helped but what could be helped would have been for her to see me in the hospital before I left. I was discharged on Wednesday and very ready to get home.

From this surgery I left with 25 staples in my head and neck. (yes, Wes counted) I also had incisions in my abdomen that were done laparoscopically. As for my hair, they basically parted it down the middle and shaved the entire left side. Yep, you read that right, shaved the whole left side. When I got home I went to my hair stylist and had her match the right side also. My previous surgeries they had shaved the bottom right side and I was able to camouflage it, this time there was no camouflaging what had been done. I mean really I was only left with a patch of long hair at the top right of my head!!! What was a going to do, a comb over? Believe me I tried, it just wasn’t happening.

I now am the proud owner of a ton of scarves and also a beautiful wig of long brown hair that looks quite fabulous!! I took Wes to help me pick it out and to tell you the truth it was very traumatic. I never dreamed in a million years I would be looking for wigs.

As for the question that is on everyone’s mind- I am sorry to say that No, my headaches are not gone. They are still very much here, still hurt and I just don’t know if they will ever go away.