What has been happening since the Mayo Clinic

I know I haven't really updated since I went to the Mayo Clinic or even really talked about how I am doing. I went off the Medicine they put me on about 3 weeks ago. The medicine helped with the pain and seemed to make the tremors is my hand better and the speech problems I sometimes have. Those things were nice, but they couldn't out way the fact that I was not able to function. The longer I took it the more withdrawn I became. If anyone asked me how I was doing I would just burst into tears! I wanted to get things done around the house but instead I would sit on the couch and stare into space knowing I wanted to get up and be productive!! One morning I had to have something done for Clay's school and so I decided not to take it until later. The longer I waited the more I realized how much it was messing me up! Fortunately it was about the time I was suppose to call the Dr. and let him know how it was working for me. That is just what I did and he told me to quit taking it! YAY.

What now? He told me that he was meeting with another Dr. who is trying some new treatments for this kind of pain disorder. What this may en tell I do not know. I don't see him until the end of the month. As of right now I am taking my Lyrica and have to take Hydrocodone at night if I want to sleep. I am not to keen on taking that stuff and even cut the dose in half. I am so fearful of becoming addicted so I try to limit how often I take it.

Craig and I have talked about going ahead and meeting with the Surgeon at the Mayo clinic that does the "Deep Brain" Stimulator. Not because I am considering it at this time, but because we would both like to be more informed about what it can do and the success rate. It is hard to find anything about its success on the web.

As this progresses I seem to becoming weaker on my left side, and it is almost impossible for me to stand in the shower with my eyes closed to wash my hair. I can't wear my glasses for long periods of time anymore because the earpiece causes the nerve pain to kick up and when it is in your face it is the worst. I wish there was a simple solution to all of this, but it seems as though I will be my own best advocate. There just aren't too many options out there. Oh they are willing to give me lots of drugs that would make me numb and possibly I wouldn't care if I was in pain, but I can't stand the thought of that...I will just keep on doing what I am doing for now. I know that I was not put on this "journey" for no reason. I am excited to see what God has in store for me down the road. I will be in touch.

Blessings,
Keri
Isaiah 41:10

Things I am Thankful For

There are so many things that I am unable to do now, and for so long I dwelt on them. Things such as, not being able to do hair down to not being able to run after my kids or have a tickle fight with my husband. There are many things inbetween those that would take too long to write out. The last few months I have realized that I have so much more to be thankful for and that those things are important, but not so that I need to sad and mourn them. I am so thankful that I have a supporting family, a husband and kids who know my limitations and love me anyway. I am thankful for the roof over my head and food on our table. I am thankful for great friends who have supported me through all of this and still are there for me. I am thankful for a God who loves me and has never forsaken me.

What are you thankful for?

Happy Thanksgiving!

Blessings,

Keri

"This is the day The Lord has made. We will rejoice and be glad in it." (Psalm 118:24)

How do you hide your pain?

I think back over the last 5 years and reflect on how I would hide the pain. The first few years I just stuffed it as far down deep inside as I could. Not wanting to take the medications the doctor would prescribe because they made me tired and not myself. This resulted in terrible stomach issues and I had to take medication to repair that!

After a while I realized the pain was here to stay so I began to put on my "Go out in public face." You know the one I am talking about... Makeup, Hair just right and a big smile on my face. Throwing myself into my job listening to all my clients troubles and to forget my own. Then coming home and suffering until the next day. I know my husband and sons will attest to this. I have been a bear to live with at times. I hate what I have put them through, for what? So I could be tough and no one would see me weak and vulnerable.

I did such a good job of hiding my pain that when I finally couldn't do it anymore many were shocked to find out I even had health issues. I realized how silly it had been for me not to share what was going on in my life. How many prayers from others I had missed out on. I didn't want to be a whiner, but truly I have talked to so many that have hidden the pain they carry around for the very same reasons. I am not saying that I will be going around telling everyone my pain level or the physical things that are happening to my body as a result of this disease I have, but rather that if someone asks I will be a little less behind my mask and allow them to care.

I hope you will share your Mask stories with me!

Blessings,

Keri

Proverbs 3:5&6
Trust in the Lord with all your heart
and lean not on your own understanding:
in all your ways acknowledge him,
and he will make your paths straight.

Where The Journey Began

My journey for a pain free life started in May of 2004. The day started out as any normal day would, getting the kids off to school and getting ready for work. (Let's back up a little. I am a hairstylist and have been for 20 years. I owned my own salon at the time and was a busy mom and wife.) I went off to work and as the day progressed I began to have bouts of dizziness and just not feeling myself, even the girls at the salon noticed this. I came home got the kids to bed and decided to do the same. My husband was out of town, but would be in late that night so I went on to sleep taking some decongestant thinking the dizziness might be from my allergies. I woke up when my husband came in and when I did the dizziness was worse and now my left arm was numb and my chest was so heavy it felt like there were bricks on it. He quickly decided we should go to the emergency room and I was not going to argue I was SCARED! When I arrived at the emergency room they treated me as if I was having a heart attack, I kept thinking this can't be happening to me I am only 37 and am healthy!! When the doctor came in and was telling my husband that my EKG was abnormal and they were going to give me an aspirin and place a nitro patch on my chest I couldn't believe what I was hearing, this can't be real. After blood work came back somewhat normal they decided to go ahead and keep me overnight for observation.

After being admitted and taken to a room I got the worst headache I think I have ever had in my life. The nurse said it was from the nitro patch. Wow I hope I never have to have another one of those in my life.

The next morning they did another EKG and decided that what seemed abnormal the night before was normal for me. The on call Doctor came in and told me that I probably had acid reflux and vertigo. Told me to contact my family doctor for a follow up and if it didn't get better to let him know. So began 5 years of a million tests and several misdiagnosis! It would take me a book to let to tell you all I have had done to me. Lets just say if you have to have some kind of test done I have probably had it and can tell you what it involves:).

Last month I decided, with the help of my Neurologist to make a trip to the Mayo Clinic in Jacksonville, FL. I had seen this Neurologist 3 times and he felt I had some kind of Central Pain Disorder, but wasn't sure where it was coming from. Instead of starting all over here and going down a bunch of rabbit trails I should go there. What an experience! I won't go into long detail, but they give excellent care and are very efficiant. I was there for 10 days and by the time I left they new what was wrong! I have Thalamic Pain Syndrome, which falls under the Central Pain disorder umbrella. Unfortunately there are not many treatments for this. The meds they gave me made me so sleepy that I couldn't function. Their advise there was try these for 6 weeks and if that doesn't help come back down for a consult to have a deep brain stimulator implanted! What?!! Brain surgery!! I have done a bit of research and I don't feel that is an option right now. Any of you out there be given that option? Please let me know what things you all are doing to help manage your pain.

As of right now I am only working part time. This way I can control my enviroment and rest when needed. I try to stay as active as possible, but as many of you know excersise causes pain! I just try to write everything down and remember what triggers it and how bad the outcome!

I am so excited to get this blog up and running! Let's be on this "Pain Free Journey" together and help to encourge one another! It is tough to have a illness that no one can see and if they do not suffer from it, can't imagine its effects on ones life!

Blessings,
Keri