It has been almost a full week since my last post and it was overwhelming to receive the thoughtful “tweets” and comments of support from the aforementioned bloggers in that post. Being the typical type A to the extreme person that I am I feel disappointed in myself that it has taken me so long to getting around to writing another post. I can justify it by saying I haven’t been feeling well and that I have yet to determine if the nausea or the fatigue has been what has kicked my pale Irish butt.
I’ve been sleeping or letting my mind wonder in the cocoon I’ve constructed ever so masterfully in my bed between Target organic sheets and a LL Bean Warmest Primaloft Comforter wrapped in a Portuguese Flannel Duvet. (Sounds lovely doesn’t it ? I am just mentioning it in case LL Bean is looking for a catalog writer otherwise it is heavy as heck and often has me holding my bladder like a petulant toddler because I just don’t want to come out from under the covers that offer me safety and warmth.)
Either way, I am here this morning and in the words of one of my favorite BBC character’s, Hector MacDonald, ” This is a three dram problem.”
I have two major life events that are stressing me to know end right now. The first being my upcoming surgery, which I can not believe is only seven days away, and the second being that the surgery is going to be taking place in New York City. (You can read more about clinical trial surgery or my GiveForward Campaign if you would like.)
Unfortunately, I don’t think I can take the MacDonald approach and drink my problems away. Even if I could that just wouldn’t be in my nature. My liver did not receive any genetic coding from my paternal Irish side. (Oops, off on a sidetrack again.)
The worst thing about Idiopathic Intracranial Hypertension (aka Pseudotumor Cerebi) is how much it can vary in person to person. Along with the fact that it is rare (1 in 100,000) and often people make comments to you such as, “you look perfectly healthy”.
Trust me looks can be very deceiving. That is the tricky thing about Idiopathic Intracranial Hypertension. It is different in every patient, except for a few tell tale signs. Those signs being the patient is often female of child bearing age, overweight or has been on certain medications (Vitamin A meds for acne, certain oral birth control, tetracycline’s, lithium), they have swelling of the optic nerves, and more than normal cerebral fluid.
The physical symptoms vary just as much. Some women say the pain is excruciating, while others say it is bearable. It is hard to gauge. It can go into remission for months or even years. That is my primary goal of the surgery is to kick this into remission, hopefully for good, like a lot of patients have done in the countries that offer this procedure as a treatment.
These past five days or so haven’t been so bad in regards to the headaches for me except for the occasional sharp pain when I cough or tilt my head the wrong way. However, the fatigue, nausea, and the back/shoulder pain (where excess fluid can collect) has been pretty rough. I’ve been sleeping longer and weirder hours than usual, which has made planning for going to NYC difficult (hard to do when you sleeping in the daytime and nighttime – for a city that never sleeps they sure do have set business hours). I am just glad that I don’t have any left side mobility issues like I have had in the past, that my balance is fairly good, and my vision is holding in there.
Before, I walked around, when I could, for almost two years with this condition with no tell tale headaches or loss of vision. Instead I lost my mobility on my left side from my arm down to my foot for weeks or months at a time. It was the worst tingling sensation imaginable and I often felt off balance. I had at least three blackouts. I cringe looking back at how infrequently I was able to shower or maintain my apartment because of the mere fact that I just didn’t have the physical fortitude. During that time I no longer recognized myself. It seems that the balance and tingling issue might have been cleared up with a standard medication, but the medical staff isn’t 100% sure. I pray that issue never comes back again.
Okay, sorry for overly long ramble. When I could have just summarized it but saying I am as nervous as can be about the upcoming surgery. I make a horrible patient ! I am not use to being the patient rather I am use to being the caregiver.
Having surgery and going alone is a huge stressor, but I am use to doing things alone. It does worry me though being a caregiver to loved ones in the past after surgery what happens if I can’t quite take care of myself for several days. I think that is another reason why I am freaking out about going to New York City. Seriously, freaking out. I’ve lived in different countries where I haven’t even spoke the language and I have seen my fair share of this country, but New York City has always been one of those cities that when given a choice I was more that willing to pass on.
They call it the city that never sleeps. Well, I need my sleep. Long live Ruhezeit, quiet time ! I love organization, yet I can make no heads or tails of their public transportation system. It frustrates me to no end because it is like they have never seen Montreal’s beautifully color coded and symmetrical grid of a metro system. I am still looking for a good site with travel tips for the city.
I know I won’t be doing much travel while I am down there, but it would be nice to have an option or two. Somehow I declared this was the year I was going to start celebrating my birthday’s again even if I was by myself. This year that puts me in the city and so far the most creative I’ve got going is a Gilmore Girl marathon (thank you, Netflix) and over priced take out if I am out of the hospital by than. I am worried about that as well. The hotel the hospital recommended at a “discount” rate is apparently close to the river. It has good Tripadvisor reviews, except for some comments from users saying things like “well, it down by the river, so you know what that means”. Nope. I actually don’t know what that means unless you are referring to the timeless Chris Farley skit !
Yep, as you can see I am not only a rambler, but am a worrier.
Well, thank you for stopping by and baring with me as I get the hang of blogging. I really think learning to condense my words and use them more effectively should be on my long to do list.