Road Trip...

I'm sitting in the waiting room of my neurologist's office, at the University of Miami. These appointment days are always so hard, physically. I dread them!!!! Tomorrow I have to come back for two more appts, it will be horrible.


Okay, I need some birthday candles to blow out, because I have some wishes. First, I wish doctors made house calls, preferably at the same time so they could "discuss" and stop contradicting each other. If I get a second cake/wish, then I would love to go to my appt's in a chauffeur driven limo, with plenty of space to put my legs up and my head down......


....... Okay, the doctor called me in and abruptly pulled me from my birthday candle daydreaming. I'm now home in bed... Hallelujah!!!!!!!!!!! Can I hear an AMEN?!?!?!?!


Today was such a bad physical day for me. Having to do the Miami trek was the worst ... unfortunately, I think tomorrow will trump today. I am too weak and in too much pain to walk more than room to room in our house. The extra walking at UM was just too much. My balance was horrible and my legs got so heavy, it was hard to put one foot in front of the other. I have to say that my neurologist's office is the one place where others do not assume I am drunk/drugged, because we are all in the same boat....the Titanic... J/K... Tom Sawyer's raft...


I usually don't go in to too much detail about my appt's, but in thinking of all the sick readers of this blog, I'll throw some current information out there. Every once in a while, I think it is good to open up about my issues ... considering that this is what the blog is about. Like I have said in previous posts, I want the chronically ill to know that I do identify with them.


As sick as I am today, it was a good appointment and worthwhile. I have many issues, but this neurologist is only focusing on my leaking spinal cord fluid. Once he gets a handle on this, he is going to get back to the MS concerns, with the elusive lesions that are needed for a diagnoses. The suspected MS component is by far the least of my concerns....both regarding symptoms and the fact that there is no treatment for PPMS. It can take a really long time to be diagnosed, especially since they are thinking primary/ progressive MS. At this point, I do not have an MS diagnosis and my other issues are more concerning. We'll get that figured out eventually.


I was under the impression that the leaking fluid was not a concern (this is where my son Chris would say "and you got your medical degree from where????") anyhooooo, my doctor said that he suspects I am leaking a good amount. Still not being concerned, he then told me that it can kill me....whaaat??? Okay, he now had my attention. He said that if my brain isn't sitting in the fluid, it could rupture arteries around my brain and some other things. I do know that people can leak fluid and never know it or have problems.  Guessing my doctor is basing his concern on my test results and symptoms.



I have a few more tests to do, then it would be on to the neurosurgeon.. ..draaaaaging my feet...literally and figuratively.



Back to the spinal cord fluid issue.  My doctor said that he has another patient with the exact symptoms as me, with the exception that she has to be brought in to her appointments on a stretcher...UGH!!!  He did say that this is a postural issue.  So, along with my autonomic dysfunction which causes my blood to drop to my legs when I am vertical, my csf leaks also occur when I am upright. 




This has shifted to priority for now. I am having a special MRI, which would measure the fluid around my brain. Also, he will be looking for MS lesions at the same time. I was surprised that this MRI, of only the brain, will take close to two hours :(. I have had countless MRI's over the years I am so beat up by the time the test is done. In the past, any lasting longer than an hour, would have been for more than one area. My problem is lying perfectly still for such a long time... It destroys my muscles and I have to be helped back to the dressing room...even though I pre-medicate with Vicodin and Xanax.


Tomorrow, I have an appointment with my immunologist, which is another major contributing factor to my overall poor health, due to my seriously compromised immune system. We have a ton of blood work to go over. This will be an important appointment too. Immediately following is an appointment with a new pain management specialist.


I can't believe how many details I am leaving out. I think if I really delved in to all that is happening to me medically, you would all think ... Really?????? No, reeeeaalllyy????? I can never list it all in one post, because it really is hard to believe.....so, wanting to appear credible, I will give snippets from time to time.


As most of you know, I have a second, more private blog. I limited it to those that are also very ill, as well as others that have been to hell and back for various reasons. I loved going to that blog on the rare occasions that I really needed to let it all hang out. It was a great, safe place to talk about things that I wasn't comfortable talking about on this blog. Unfortunately, I found that it popped up, simply from googling my name. Not feeling so safe anymore, I deleted all the posts. It was entirely too personal to be so public. I might start it again with a fictitious name.. Cathy Springsteen perhaps???? 


I'd like to think of something that I am grateful for, before signing off. The hard part is picking just one! I'd have to say that it would be the super fun third birthday party for my sweet Gabby! It was the best and we all had a great time!!! The kids are too precious for words - little bundles of love! A nice thing about writing this blog is that I wouldn't have otherwise stopped to think of something to be grateful for today... :)


Even though I am writing this in bed, this is still too much. If I can, I'll write tomorrow after my appointments.


Hoping there is a limo outside tomorrow, to drive me back to Miami...


If you know my mom, please don't mention my blog to her....thanks..not even that I'm still writing...very important to me..


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