Update: Things Change Fast!

Hi Everyone!

I realize that it has been a long time since I started this blog with good news.  There has been a lot going on!  

Let's begin by saying that I only had about three good weeks before the pain returned and returned with a vengeance.  I ended up being allergic to the medication that helped achieve remission had to discontinue use.  After trying many different medications I asked to just give up and not take any of them because it was too hard on my body with side effects, etc.  With the brutal winter (wind is my kryptonite) I wasn't able to do much at all.  

However, I did set up two more support groups that are growing every day.  The first one is for all with chronic pain and illness and is called #IamStrong.  The second is a secret group for depression/anxiety with chronic illness/pain that is by invite only.  The purpose of this group is to just be able to let it out and vent without worrying about being positive all the time or people not understanding your pain.  Of course #icstrong is still flourishing and we are nearing 800 members.  I am humbled every day as to how amazing the group has turned out and how much hope it has given so many people.

Last August, after being diagnosed with occipital neuralgia, I had to have a ct scan of my neck (because of the interstim I cannot have an MRI) and was told I may have to have neck surgery.  After seeing the biggest egotistical jerk of a neurosurgeon in Green Bay I went to Milwaukee for a second opinion.  This one was very nice but did not want to do surgery due to the issues it could cause in the future.  After my occipital neuralgia became resistant to all treatments and was spreading to my face my neurologist referred me to another neurosurgeon in Milwaukee for a spinal cord stimulator.  I met with him and right away he agreed that I would benefit from a c2 peripheral nerve stimulator but he did not do them.  He reached out to a colleague who agreed to do the surgery but first my neurosurgeon wanted me to have a repeat ct as he didn't like what he saw on my last one 10 months ago.  After that excruciating test (with myelogram so dye is put into the spinal cord) I figured that all would be set for the c2 stimulator.  However, after getting the results the next day he called and gave me the news that things have gotten worse and now the disc was pushing on the spinal cord and had to be fixed.   It was a lot to process again as I had just gone through this whole thing several months later.  I had just returned to taking classes again and had started the day before.  So, school is again put on hold.

Surgery is scheduled for next week in Milwaukee and as the time gets closer I am getting more and more nervous.  They will be removing the disc between c3 and c4 and then putting in a plate and screws. I have a great God, a wonderful surgeon, and a lot of family and friends who are sending prayers up every day so I know that it will be the best bad situation it can be.  Unfortunately, he does not think that this will fix my "c2 issues" (as he calls them) so after the long healing process from this I will be looking into the c2 stimulator as well.

Thank you all for being on this journey with me!  I cannot wait to get back to my master's program and finish my last 4 courses to be patient advocate with an MS in Human Services!

Till next time.... #icstrong #IamStrong #powerinprayer

Finally Good News!!!

This is my first blog of many in my advocacy efforts for those with chronic illness and chronic pain.  Because of the good news I received today I am going to get my application ready this week to switch to the Master of Human Services degree so that I will have the schooling to be the best advocate I can be.  Add this to the core program in Mental Health Counseling master's program and I hope that I can provide you with some great information and perspective.  But first, the good news:

I haven't wanted to say anything for fear of jinxing it but after talking to my pain management doctor/neurologist today he said I could feel confident sharing.

About two weeks ago, about as quickly as it began July 8th, 2014, my pain just vanished! With it came overwhelming nausea and fatigue as well as vertigo and some other minor issues. He is confident that this may be the absolute end to this last eight month horrible flare!!!! His opinion is that my body is getting used to NOT having pain so it is just making up for the time it took over complete control of my life.

While I will have occipital neuralgia for the rest of my life and this is not the end of my chronic pain associated with it he is certain that all the treatments I have gone through are FINALLY working!!! I will be starting physical therapy soon and will still be meeting with a neurosurgeon in Oshkosh (cross your fingers) to discuss the spinal cord stimulator just in case I should need to go that route in the future. We are not completely sure that this will be the end all so at least that will be done so surgery could be scheduled right away without waiting for an appointment to talk first (takes months).

I am on a lot of medications and supplements and will be for the rest of my life, for both the Interstitial Cystitis and the Occipital Neuralgia but I can tell you that it feels amazing to be pain free!

GOD IS GOOD!  I really want to thank you all for praying for me and keeping me in your thoughts the last year... and especially lately when it was almost unbearable. For those who have been through it with me I owe so much to you.... thank you for holding me up when I wasn't able to do it myself.

The next few weeks/months are going to be hard as I get back to the gym and physical therapy to build up the muscles that have taken a toll but Dr. B said to be optimistic because this is a great sign!!!!

I am so excited and hopeful and will be playing around with all the features of this blog experience soon... stay tuned!