Wednesday, April 21, 2010

Hold the Mayo.............not in a good place.............

I was just called out by a friend on my last post about Mayo, she said it was a cop out, and she was probably right. I had promised to be honest with this blog, but just in a bad place today and figured it was better not sharing it. I feel really ashamed with how I feel right now, as I know when I look back in a month or a year it will have all turned out good and I will feel stupid for where I am at right now. But at this moment it doesn’t feel good and I am really struggling. Let me back up and explain why…….

Ok first of all, why I am doing the Mayo thing in the first place, or more appropriately what I expected or hoped to get out of it. I went into this with one goal, finding out if there was any marked improvement in the nerve function in my right side and if there was to understand how to continue that progress. I expected the testing would be pretty simple, another EMG/Nerve Conduction test and comparing that against the old one. I expected this little because when this happened 14 years ago no one had answers on exactly what the damage was and I had long ago accepted that I would live the rest of my life only knowing when it happened and with the assumptions that it was all from the shunt pulling out of my spine. I gave up over a decade ago on any more understanding than that. I had moved on. I have spent the last 5 months with Gui doing everything I can to get what I can out of the body I have. In the process I found a great level of confidence in what I could do with what I had. I can honestly say there were moments in the last few months, and especially in Israel this past trip, where I even forget I was damaged goods! I saw my body as functional for the first time in a long time, and felt secure that others did too. It was a great feeling and something I had become really comfortable with. I thought I had engrained it, I was wrong, so wrong.

Let me explain a little about the Mayo Clinic before I go any further. If I wasn’t the patient in all this, I have to tell you I would be standing in awe of the system at Mayo. Talk about efficiency, it’s amazing. Essentially what happens is you start with meeting your dr (in this case Dr Cross, who I had not met before). After a lengthy meeting with the Dr. (I was shocked how much time she spent with me, with an institution as well known and famous as Mayo I expected 5 minutes with a Dr who thought they were way too important to waste much time on me, I was wrong. She was amazing and was really interested in what was going on) a plan is developed. This plan involves all the tests and other doctors they want you to see. And you start seeing them IMMEDIALY. The plan includes appointments strung out over the next few days. You then go on what feels a lot like a scavenger hunt, moving from one place to another in this huge clinic, which is spread out all over the city of Rochester, MN. You then end up with a follow up appointment back with your doctor (mine is May 12th) to go over all the results and findings.

I mentioned efficiency, this is a huge clinic, they see thousands of people a day, but what I was struck by is at not one of my appointments did I wait more than 5 minutes in a waiting room. For as full as the waiting rooms were they just keep people moving. On day one I had blood work, EKG, xrays, urinalysis and an MRI. I have two more days of testing coming up. Still coming up I have medical genetics testing, fasting blood work, a 3 hour MRI (to look at my full brain and spine and all the arteries and veins), a consult with a neurosurgeon, a consult with an internist, an EMG (muscular and nerve testing).

Obviously this is way more than I expected, and that is why my confidence in my body started to fall apart. Dr Cross did not come at this with just the “let’s compare” I was ready for. She from moment one wanted to find the why. She wanted to know exactly what had gone on. Especially since her evaluation of my body confirmed something I have thought all along (but never said to her), that for where the damage is theorized to be (lumbar spine nerve roots) ½ of my symptoms (face, arms and torso) make NO sense. There is definitely root damage, hence the drop foot and some of my symptoms, but there has to be more. Her working theory is that I have multiple issues going on, and that the none leg stuff may be related more to an issue with my spinal cord than the nerve root damage.

All in all, this is great, don’t get me wrong. I would love to have answers. But I have to admit opening that door did me in. I have coped, I have accepted and now to have to wonder and face it all again just threw me for a loop I wasn’t ready for. I was totally jarred by one of her comments as she was watching me walk. She made the suggestion that I might want to consider wearing a leg brace again to deal with the drop foot. I know her intentions were positive, but it wasn’t something I was ok hearing. I gave up the brace a decade ago because of the stigma of using it (not to mention it was annoying) but to hear the person who I had hoped would tell me how to get better start at that spot broke my heart. I was not ready to have to face being disabled again and it hit me like cold water.

The rest of the day just re-enforced how 15 years has changed really little, and each appointment cracked my confidence a little more. By the time we got to the MRI I was fully shattered. I have HORRIBLE veins. I have since my years on prednisone and I had really hoped in 15 years they had gotten a little better. I was optimistic when the person drawing my blood got it on the first try, obviously that was a fluke. An hour was spent with 4 people trying 8 times to get an IV in me for contrast for the MRI. It was just like it was back in the 90’s when they used to have to call the surgeons to start a line or consider a central line (the conversation yesterday was we were one stick from inserting a PICC line).

I know I shouldn’t be where I am at today with all this, but if I am honest (what I was told I wasn’t being in my previous post). The last 36 hours has shaken me to my core. It has me wondering why I am wasting time and money with a trainer if I am going to end up back in a leg brace and if all that work has left my body just as broken. Don’t get me wrong, I know I have lost the 70 lbs. I haven’t lost sight of that. But the weight is just a side effect of what I really thought I was getting out of training, and today I just don’t know.

It is hard to admit but I walked into the club tonight (after avoiding going to work out today) and I felt as out of place and inadequate being there as I did when I joined in November. For the first time in months I felt like everyone was staring at me and laughing at me. I was supposed to be working out with Gui’s boss while he is away and I just can’t do it. I cancelled all my sessions with her. Some of that was because of schedule conflict issues with Mayo and work, but I know had TB been around I would have worked to find a solution. I just don’t feel like I can handle how inadequate I feel about my body right now with her or anyone. Part of me wonders what is the point anyway. Am I kidding myself that the working out is going to make any of this any better? Have I just been playing a head game with myself the last 5 months? If I am totally honest, I am not even sure I want to go back to training when TB gets back, that is how far I have been shaken. I just don’t know if it’s worth the effort any more. I thought I had come so far and to hear the doctor’s first suggestion be to go back to the leg brace has sent me down a slide I had never expected.

I will say I now realize scheduling this while TB (Gui) was away was one of the stupider things I have done. I never imagined how much this would knock me backwards and while him being here would have done nothing to prevent that, having the person around who can usually successfully kick me in the butt when I start to crumble related to my body would have been at least a chance to pull myself out of this hole. Instead I feel like I have just curled up in the bottom of it and don’t know where to turn or whether to just stay here and accept it all as the way it is going to be.

Total truth, a big part of me has considered just scrapping the rest of the testing even at Mayo but I am forcing myself to go ahead. The damage to my confidence has already been done so I might as well keep walking through the door I opened and maybe get some answers. That is part of what is also eating at me, what if I have done all this, put myself through all this and I hear on May 12th, well we really don’t know…….I just don’t know if I can handle that.

But before I can worry about that I need to get through these next two days of testing. Tomorrow is going to be the hardest, another MRI (I am very claustrophobic), more blood draws and more IV’s. Can’t say I am looking forward to it in the least.

3 comments:

  1. Tammy Region-LandrethApril 22, 2010 at 12:28 AM

    You can do it Pam, I know that it gets discouraging, but we with these mysteries have to keep on pushing, there will be a light at the end of the tunnel, you just have to keep looking for it! Don't let yourself down because that is who YOU have to look at each day in the mirror, nobody else. You are the only one that you have to please now, and if you give up do you really want to let yourself down again? Keep looking for that light because someday it will be there....

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  2. Tammy, thanks for your note. It was ironic to me as I read it that you mentioned looking myself in the mirror. I realized last night that it was the first time in a couple months that I looked at myself in the mirror and was repulsed with what I saw. Other than looking in the mirror while I work out (a major hang up of mine) I had gotten past that. It's all frustrating!

    Off to day 2 at Mayo.

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  3. Pam
    I know that I do not know you very well. But I read you blog most days and I am inspired by it.. To see all that you have done, with what you are going through is amazing. Don't give up on yourself. You have come a long a ways.

    I had a friend who had cancer, the Doctor told him he had 3-6 months to live. It is 11 years later and he is going strong.. WHY? It is because he has the same positive attitude that I have seen in you.. The power of positive thinking can make you go farther then you ever thought possible..

    Don't give up Pam. Be the person you have been since November.

    On a side note.. Tiffany does give a good butt kicking, So I may have canceled with here to :)

    Scott

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