Posted by: thedianestory | April 12, 2012

My Health Update

April 12, 2012

I realized that it has been quite sometime since I’ve posted an update. I think part of the reason is that I’ve got so many health issues going on at once that I just don’t even know where to begin anymore. By the Beginning of January this year I had really reached my breaking point. This was a feeling that I have never had before in regards to my health. For the last thirteen years I have dealt with the blows to my health head on, scheduled surgeries, scheduled appointments, took medications and just rolled with the punches. But I hit a point that I just couldn’t take anymore. And while I don’t like to live on pain medication, because I always try to deal with the root issue in an attempt to get off of medicines, I had to make a choice to just call a time out.

This required me to take more pain medication than I like to, but it also allowed me a break from being poked and prodded for awhile. I took the month of January off from appointments and just let my body and mind have a break. I was scheduled for one procedure in January and the morning of the procedure I woke with NO peace about it at all. I’ve never felt that way about any of my surgeries/procedures before. So I did what I’ve never done before – I called an canceled it. It could be rescheduled. That was really the day I realized I just had to call the time out.

By mid February my stomach issues were so flared that I had no choice but to obey doctor’s orders and go through two procedures. I had Esophageal Monometry done as well as an Upper GI Endoscopy with Bravo Capsule placement. This capsule would keep track of my PH balance in my body for 48 hours. These tests actually FINALLY revealed some issues. When I awoke from my endoscopy and the nurse told me the findings, she was shocked at my elation to be told that there was something wrong. What she didn’t realize is that this finally meant answers. Some light at the end of a three year dark tunnel.

The endoscopy revealed me to have several ulcers as well as a hiatal hernia. The manometry revealed very high pressures in my espophagus and revealed a condition called Nutcrackers Esophagus. This condition derived its name because the esophagus constricts so much and has high amounts of pressure – like it takes to crack a nut. This means that the esophagus does not allow things to pass thru as it should. All of this relates to the pain I’ve been experiencing perfectly.

So Now What?

I was put on acid medication to help the ulcers heal up and then sent to a general surgeon to see about repairing the hernia. The surgeon I saw was amazing but was very concerned about the pressures in my esophagus and wanted to speak with my GI before making any decisions. He left me in the room and went directly to call my GI doctor. Together they decided that it was not safe to proceed without sending me to San Fransisco to see the specialist that saw me when I was hospitalized there back in 2009. There is a possibility that a muscle in the esophagus is going to need to be cut in order for the pressures to be what they are supposed to be and if that is the case, the hernia can’t be repaired first because that would impede them being able to cut that muscle. So most likely the GI doctor in SF will opt to send me to a surgeon in the bay area who can do the necessary surgeries all together. These surgeries are very in depth and on the more serious side of things, so I am facing some pretty major stuff this summer. At this point I can’t even get in to see this GI doctor until June at the earliest – though I plan to keep calling to see if they can get me in sooner.

On top of it all my pelvic pain has also been causing me major strife. There was a period of ten days or so in the last month that I was literally in bed, barely able to function. I’ve been in contact with my doctor in Los Gatos and have an appointment next week with him. They are concerned because I’ve also been having horrible hip/low back pain and they are worried there may be a muscular-skelatal issue or joint problem going on. They called me today and gave me the names and numbers of a couple doctors they want me to see in the bay area. They are sending me to a Physiatrist and Rheumatologist down there, as my local RA doctor is now refusing to see me because my case is so difficult.

Finally, I have had issues with my left knee. I have had horrible pain and trouble extending it completely and pain with walking. I was sent for a sonogram which revealed a cyst on the back of my knee. My doctor injected it with cortisone last week and said after a few days it should get better. It has now been one week and it seems like it is getting worse, instead of better. I am going to give it until next week and if it is still not doing well I will call my doctor again.

Well, if you are still with me, thank you. I know this was long, but I know many of my family and friends rely on this blog to stay updated on what is happening with me. I just haven’t had the words and follow through to sit down and blog. I am hoping to get back into the swing of things here soon. I still want to finish up my posts I had planned for last month for Endo Awareness. There are a few posts I never got written because I was so sick. Thanks again for hanging in there with me. I appreciate all of your love and prayers.

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Responses

  1. That all sounds miserable Diane.
    I’m sorry.

    I wonder what the deal is with the cysts. ? Hm.

    I love you friend. Glad you called the other night.

    • I keep asking the doctors about the cysts everywhere I’ve had them, trying to get them to understand that they all must be related somehow but I’m not getting much support on that.

      So good to hear your voice and catch up. Love you. Back to the doctor Wednesday the 18th. Will post an update once I’m back from the bay.

  2. Yuck. Thanks for the update, Diane. I haven’t been online to do much more than check my email lately, but I’m glad to see you’re finding answers. You’ve probably already heard this, but just in case, people tell me that a lot of cysts are caused by caffeine. Don’t know if it’s just a certain kind, but you might try researching the two together. Maybe it will lead to something else.

    Love you, my friend! Know that even if you’re not hearing from me in a TIMELY manner, you are always and forever in my prayers.

    • Thanks Michelle. I’ve read that about cysts too. What I find frustrating is that I’ve had cysts in so many places in my body – ovaries, armpits, eye, and now knee – yet no doctor wants to try to piece it together. I can’t imagine there NOT being a common denominator amongst them somehow. I don’t believe the body produces a bad cell in several different places without them somehow being related. I wish doctors looked at the body more as a whole and not one area alone.

      You mean the world to me. Hope you don’t forget that. Thanks for your love and prayers and friendship. I love you.


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