So I feel like I just keep posting here what I write in my blog... but it is all I have the energy for these days. I promise that one day I will be up for more chatting and discussing instead of just copying what I've said elsewhere. But for now, here's what is going on:

So, it has been a while since my last update. I have really been struggling with pain since my trial SCS was taken out on Friday. I had such amazing (99-100% relief of my neuropathic pain) relief and when it was taken out, I not only felt all of the neuropathy pains again (zero to full force in 30 minutes which was TOUGH to handle), but also the surgery pain. The pain was truly awful, and I slept the majority of those three days (Fri, Sat, and Sun) away. Finally today my back is mostly better. It hurts a bit, but not nearly like it did.

I am so ITCHY though and it is driving me crazy. I have heat rash. I took my fentanyl patch off on Friday so that I could put heat on my back since it was so sore… and I ended up getting heat rash from it--grr. It is nasty! I’ve never had this before and I used to use the heating pad on the highest setting every single day--and I only used it for two days on the lowest setting (and a tshirt and sweatshirt on). I have been putting lanacane on it, but it doesn’t help for long. I looked online and it said to not put creams on it because it could make it worse--so I don’t know what to do. I am probably going to try taking some benadryl. It is up where I can’t reach it (I think) so I have to wait for my mom to get home. I hate being itchy, especially around a sensitive area. I want to scratch it, but when I scratch the incisions, it hurts. So I am trying to not scratch at all.

So, I don’t have a whole lot to talk about in regards to the last few days since I pretty much slept them away. Sleeping truly is the only time I don’t feel pain, so when I have horrible days, that is how I escape the pain when I can’t do anything to help it.

So let me back up to last week. The last time I wrote was on Thursday. I went to have the SCS trial removed, and I was NOT looking forward to it. It wasn’t too painful to have it taken out, but I was bummed to have the pain come back so quickly after it was removed.

As I said, I slept the majority of the weekend away. Yesterday was the worst day as far as the neuropathy goes. I seriously slept almost the whole day away. I basically was only awake from 7 pm until midnight or so. The rest of the day I was in and out of sleep pretty much the whole day. I didn’t sleep more than 2 hours at a time, though, and I was still exhausted. Even when I took my spasm medicine that knocks me out, I slept for such short time periods. It was NOT fun. I can’t remember if it was last night or the night before, but I had a really awful dream. All three nights I had crazy and scary dreams, but this one was particularly awful. It was about a killer who kept getting into my house and trying to kill me and my family… and somehow he had brainwashed my mom so she kept letting him back in the house and when I would tell her that we needed to call 911, she would brush it off and ignore me. I was so scared when I woke up that I called my mom when I woke up from the dream. I was so scared to close my eyes and go back to sleep.

I have finally been totally approved for SSI and Medicaid--I knew I was approved back in September, but I had to wait for them to check my bank statements, etc. I figured the money would go into my bank account today but it hasn’t yet--I talked to my case worker and she said it may take a day or two extra, but hopefully I will be getting 3-4 months back pay soon--along with the Nov. money. I will be getting the low amount until December when I will get $674/mo. That is going to be so helpful because I have bills to pay and things I need for my health! =)

I have a date for my SCS permanent surgery--at least if everything goes as planned and insurance issues don’t hold it up. It is set for November 10th at 7:30 am--registration at 6 (and that’s an hour drive away--so very early morning).

It feels like -forever- because the pain is really horrendous… yet it is really soon at the same time. 9 days--yippee!!!

There is a site that I go on a lot with several different forums. They are mostly based on neurological health problems, though there are forums for chatting and other things as well. A lot of my friends on the SCS forum have come up with names for their SCS implants. After all, it is something that is living inside of you that you were not born with. It is a chance for freedom and a better future. A best friend that takes the pain away (or at least eases it up). It is a miracle.
I have thought about what I should name mine. I don’t usually name things. My friend Candice named my car Klondike, but that is really the only thing of mine that has been named beyond stuffed animals and my three cats (two of which I named). I thought of several--the close second place was going to be Ray, after my grandpa on my dad’s side of the family. He meant the world to me when I was little, and I thought maybe I’d choose “Ray of hope”, Ray for short. I changed my mind, though… and decided on HOPE! Because honestly, what better word could be used to describe something that has the potential to get me out of bed and allow me to live my life the way I want to?

So my SCS implant will be referred to as Hope. I am going to try to explain this name every time I post something and talk about it, because otherwise it wouldn’t make much sense to a first-time reader. However, Hope is MUCH easier to type than spinal cord stimulator implant. So, Hope it is. My absolute favorite word and the one thing (besides God) that I cling to with all my strength. J

Just 9 short days and Hope will be a part of my life. I cannot wait!

I am not looking forward to the next few months, though. I can’t have people visiting the week or so before surgery because my immune system is weak from the steroids I am on and I need to stay healthy so it doesn’t have to be rescheduled. And then after surgery, it will probably be a few months (maybe more) before I am really up for having visitors or sitting online to chat.

It took me until today to feel pretty good after the trial surgery--and that was so small compared to the next surgery. This surgery is a bit different from the lead wire surgery (the permanent one, not the trial--it is obvious that they are different) because it includes a laminectomy to get the paddles in the right place. I’ve read that it usually is 3-4 months before people feel good enough to go back to their normal lives, and can even take a lot longer (and sometimes shorter), depending on the person.

I am looking forward to the spring when it is helping me and I am healed from surgery. I am not, however, looking forward to going through the back pain of surgery again (and at a more intense level). I am also not looking forward to missing out on Thanksgiving celebrations and possibly even Christmas. If the permanent implant surgery goes like my trial did, it will give me relief but I will be in a lot of pain from the surgery itself and will not be up for visitors for a -long- time. So, it is possible that there may be a large amount of time that I am not online or available by phone and whatnot. It is extremely hard to find a way to lay where I can type with the limitations after these surgeries. It was hard enough to do that after the trial, and that was so minor compared to the next one. So, I will probably be MIA for a while with only a few updates when I am feeling up for it.

9 more days and Hope will be a part of my life… and Hope will change my life. Just like HOPE truly has changed my life in many many ways. It seems like Hope is the PERFECT name for an object that is going to change my life and give me a chance at a brighter future. Besides, my cats are all boys, so I need a girl in my life

I know to most people it probably seems silly to name such a thing as an implant… but it makes sense to me. If people can name their cars and other objects, why not name something that is going to change my life? It also helps save me a lot of time typing out the very long name each time. =)

I am going to post this and check out a few blogs before I head to bed. I have been awake longer today (15 hours so far) than I have been in the last 2-3 days combined, I think.

I hope that everyone is having a good day--happy November, everyone! This is going to be a tough month for me, but in the end it will be well worth it. Please please pray with me that the surgery would go as planned and that there would be no serious complications… and that I will get similar relief from the permanent implant as I did from the trial one. I greatly appreciate your thoughts and prayers. God, prayers, hope, and love--it’s all I’ve got… and all I really need! =)

Well, aside from the pain that has come back......SARAH! This is wonderful!
The SCS did what it is supposed to do! This is really gonna make a huge difference in your life!!
I'm thrilled you'll be getting your implant in the very near future as opposed to having to wait for months like others had to do!

And naming your SCS is fantastic! Several here have done it!
"Hope" is beautiful! And you initially were thinking 'Ray of Hope'.....and of course me being the VAIN one......I was gonna say HEY! How about "RAE of Hope".......

God Bless you Sarah!
Thank you SO much for the update!
Rae

Sarah so glad to hear you got so much relief from your trial. Nov 9th excellent. Brilliant you have something to look forward to. Don't be getting bogged down with what pain you will endure post surgery. Think positive and remember after the initial pain of the op there is a bright future ahead


Good luck

Jackie

haha Rae I love you!

I am so stuck on Hope, but it is indeed going to be my little Ray/Rae of Hope. After my grandpa who is so special to me... and one of the first friends I met who enlightened me about life with a SCS. Perfecto! =)



Insurance approved it, so the date is now final! November 10th it is! 8 more days!

Gosh .. I'm excited for you ... November 9th ... not long now! I'll be thinking of you .. and with you all the way in spirit. (hug)

Hahah .. do any of you find you get all emotional for people on this forum .. I am crying, proper snotty tears now for you ..

Saffy, you are too cool!

Doesn't that sound like a good idea for a title to a book??
Sarah! You are a writer!
We need to find you a publishing company!

Who knows......'Proper Snotty Tears' could go on to getting a SCREENPLAY!
......I think we got this excited on Mark's thread.....yes indeed!

......propersnottytears.......too cool.....

I love it, Saffy! haha

And Rae--I LOVE writing. I so wish I could do it more. I have lost a lot of inspiration for writing with all this pain. I used to write childrens books--and have dreamed of writing a book about this whole experience.. following God even when the pain is awful--and knowing it serves a purpose far beyond what my mind is even capable of comprehending.

I miss writing... and reading, for that matter. Both have gone by the wayside... it was bad enough to limit them, but now I haven't done -either- for months. How sad to not make it to my goal of reading 100 books this year... how sad that I haven't read a book in a few months. It makes me so sad.

I am excited for Wednesday. One more week... it's coming soon!

I am a bit nervous that we are thinking my daily headaches could be caused by a problem in my neck or back (since I already have such problems there).. and in a week, no more MRIs are allowed. How have you guys dealt with that? My surgeon said that with my extent of problems in my back, it may be hard to get care in the future without the clear images from an MRI.. and that worries me. Still, that alone is not enough for me to cancel this--99-100% pain relief was too wonderful and I am not giving up on that unless I have no other choice!

I cannot wait for this next week to pass... I go to my doctor for my pre-surgical physical tomorrow.. and need to get a flu shot. They are happening today and tomorrow for free (at the college.. through my mom's insurance) and if I don't go there, then I have to pay for it... but if my doctor will say that I am high risk, I can get it done any time (by appointment) on campus--but NOT in the student union where they are being done today and tomorrow... thousands of healthy and sick people--I cannot risk getting sick. I don't know what classifies as high risk.. so I may have to risk it or just end up paying for it.

I am on steroids that weaken my immune system... and am having surgery in 1 week--I cannot afford to get sick! I have already told everyone that after today, I cannot have any visitors until I am healed (some at least) from surgery. I can't risk someone bringing some sickness into my house--I catch everything anyway... and then with the steroids--yikes. I did tell one friend she can come over tomorrow since today is her birthday and she has other plans... only because we've been trying to get together for 4 weeks and it hasn't worked. But that's it--nobody else allowed in my house! The last thing I want is to catch something and have to put this surgery off. Nuh uh. I need it--and I need it now!

We are definitely all going to be sending out those good vibes over these next few days.
"Cough!" .. Umm .. tis ok, I turned away from the computer *grin* .. actually, it was just a crisp going down the wrong way.

This time next week I'll have seen my Nurse Specialist (Debbie) .. I've got a whole load of questions for her that I didn't think I would have. I thought I'd read enough already, but coming on here has opened my mind to so much more.

Good Luck tomorrow Saffy Keep us updated

Jackie .. what are you on!? It's next Monday, not tomorrow/today. (Checks calendar .. yup .. Monday .. heheh! My husband and my youngest daughter who will be caring for me in the first week or so are coming in to see the Nurse with me)