It has been a long time since I have really written any negative thoughts about this illness. Tarlov Cysts are not something a lot of doctors are informed about, thus there is not a lot of understanding. Radiologist seem to be noting them more often then they would have 20 years ago, but that does not help too much. I was one of the lucky ones out there and my first MRI noted them. So I did not have to go through the barrage of doctors, physical therapy, and prescriptions that just make life more miserable. Yes, I saw several doctors and yes, was treated as if I had lost my marbles. But I will say it is in the past for me. I will leave a doctor’s office if they try to assume I am a wack-job. But I go in, prepared with literature that they could easily find since most pay for journals to cover their supposed field of expertise.
All that being said, I have let you know that my newest MRI showed some things that did not make me a happy Tarlov’er. So here is what is haunting me. So, What the heck do I do? I know that the rate of progression for my current symptoms is following the rate of my introduction to this disease. If you have read my blog, you know that I steer away from narcotics. So I have been trying to deal and manage with the discomforts that are progressing since January’s fall. But the levels of discomfort seem to be growing to down right pain. Then the electric hum, in my legs, is making an appearance in both legs at the same time. That is a hard one to tolerate. I can take one leg; but both? I’m sitting here shaking my lovely head “no”.
Here are a few of my fears. Something I rarely share is the “fears”. Since the issues are going up my spine and possibly into my brain stem, I know about some of the tests that are administered to get a complete diagnosis. One of those requires dye put into the spinal column. Ok, if I agree to have that done, I know full well that the tiny hole they will make may not close. We are talking extreme pain until it heals. That is pain on top of what I will already be going through. This test requires being awake for it and not moving. Sorry, I move when in pain. I get twitches all the time. Will I be the one to cause myself damage if I jerk while the contrast is put in? Then if I am able to not jerk, I think, what if we have an earthquake and the doctor administering the test slips up? Yep, I must be a Sheldon, I can think of some doosies of scenarios. I also know that the more you mess with your spine the more you are harming your total health. There are connective tissue diseases, auto immune diseases, there is the chance of infection, and the list goes on. Can you tell my brain is on doomsday over-drive?
I also fear that is I sit here, and do nothing, that I will make all things Tarlov Cyst worse. You know, the sitting on brimstone, the rocks crammed along my tailbone, the hum in indiscriminate parts of my legs, the loss of the use of my feet while driving, heck my freedom to hop in the car and go eat a burger. Then I fear the damage to the nerves that control the bladder and bowels, the bee stings in unmentionable places, my vision, my sleep, my headaches. For those that have not caught on, these Cysts can affect a heck of a lot of the body for them supposed to be asymptomatic. [Sarcasm!]
Then we have personal-life sides of this disease. The lack of understanding we are faced with from all fronts. The “why aren’t you doing this’s”. The “why can’t you do that’s”. Add the “who do I share with ”questions you ask yourself. We even have the “why did this have to come back?” “Can I not get a break?” You know those thoughts you get when you start pitying yourself. Yep, I have had several good cry’s that have not helped a tiny bit.
Let me lighten the mood a bit. We needed to have the roof replaced. So that was scheduled for the 28th. 6:30 am I get a doorbell ring! This girl had just dozed off really good. Don’t bother me that early, please. Who was ringing my doorbell? The roofing group. I was not trying to use my stairs that early and especially after having to take a narcotic to ease my body a few hours earlier. Attempting stairs, much less walking a straight line, was not happening. I just cracked a window and said, “can I help you this early?” Yep, I had to get the barb of “this early” in; to my disappointment he did not even notice. He barely could speak English and said something about the roof and his boss. I said, “whatever” and went to my back door to move my veggies to the back of the deck in the hope they did not get damaged.
But I think they have been pretty busy all morning. They took breaks in rounds, and then half took their lunch while the other half continued working. But something that surprised me was how they cheered each other on. They clapped, whistled, and hooted each time a chore or stage was complete. Just think how that makes them feel to celebrate a completed job.
What hooked my brain is that I have never ever had anyone cheer for me at a workplace. Oh, I had a few reviews that they boringly said I was exceeding my requirements, but never any cheering, slaps on the back, that the roofing crew were giving each other. They even had a woman in their crew, and they cheered her when she completed something. You heard/read that right. They celebrated her work.
I then started thinking that not too many people cheer a chronic illness person on. No cheers for doing a simple chore that can be challenging to us, but simple for others. Heck, I sure would love a cheer or high five for running the vacuum cleaner; even for lugging a load of laundry up the stairs, in three trips to break the weight into manageable safe levels. My sarcastic-self thought that I should look online for a cheering app to download on my tablet, so I can play it when I do one of my chores that will set my body into a flare. Think about it, you vacuumed and then you just touch the app and give yourself a bow. [oops, sarcasm again]
Anyway something that had me hitting a prescription bottle again, so soon, was the noise. We all know the old roofing had to make an exit so the new could be put on. With about five men on the roof, with those flat shingle removers scraping and scraping and scraping; that did me in. The scraping sound wasn’t too bad, it was the sound of the metal hitting the nails. This roof was put on with real nails, no nail gun. Then you had one guy walking the roof and banging the stubborn nails down flat. I was thinking to myself that it sounded just like being in an MRI machine. I tried putting an earpiece in to listen to my music but that did not work. I was almost to the point of going outside and asking them to give me a 15-minute break when it finally got quiet up there. Yay, they had finished that part of the tasks. Any who, we all lived through the roof replacement.
But I did put a call into the surgeon’s office and discussed some things with the nurse. I came to the decision to go in for a consult. That way I can ask all the questions this brain can dream up in the next two or so weeks. Now to go collect extra copies of MRI’s and CT scans. I have my copies, but the doctor wants his own copies that I have not opened on my own laptop. I guess that I made a ‘big girl’ decision by making that appointment. Am I still scared, you betcha! Will I fly? Heck no! Being the summer, the rates for better-than-coach is too much and then just the thought of how tight the seating is makes this lovely body tense.
I hope that if you are having fears about your illness, or just anything in life, you will learn to share those fears.