OUCH

Just now recovering from a painful end to a really long day (followed by a really long nap).

Monday was a great day in PT, actually managed to use the elliptical machine for 5 minutes, but was exhausted so really prefer the bikes for stamina building. Monday was Holly's b-day so we had a nice little get together with cake & ice cream. I think I was trying to keep up the distractions from what I suspected might be a rough day on Tuesday. I told Holly that of all the treatment here (including the operation) I was most fearful of infusion day. I commented that I would rather have 6 needles in the back in a row, than have a hospital attempt to find a vein to access for infusion. At least with the surgery they put me under, before they began their IV search adventure.

I have realized pain is a very personal experience. For the last 3-4 physical therapy sessions the center has also had a young mother relearning to walk after being in a wheelchair due to what looks to be a stroke in childbirth. Her hour is full of non stop complaining and some screaming as the therapists attempt to get her muscles working again. The therapist asked me to tell her if I had any pain (I think the screaming put everybody a little on edge) and I said I would only do so if the pain was unbearable, the rest is just a fact of life (and amazingly something you get used to - another remarkable discovery MS has afforded me).

So while the doctor tells me I will feel a pinch, what I actually feel is the burning/digging sensation of a needle going in to my spine. Painful - yes, doable - very, and lasts for a sum total of 1 minute tops.

Now on to the infusion. I warn the nurses of my disappearing veins - and request they try and find something in the arm, as for some reason the pain receptors in my hands (though they are numb to touch) seem to be heightened. So off we go with the tourniquet on (first) my left arm. Oh my, they have located what they identify as a great vein, higher on the arm than I like, but still the arm - could I be this lucky? Unfortunately that vein "pops" and makes a bit of a bloody mess, so back over to the right arm - three sticks with no luck, and finally they get me to agree to try the hand and they head back over to the left arm.

Having a needle go into my hand feels like a hot poker driven under my skin (if tortured with this method, I wouldn't last 10 minutes and that may be optimistic). I will never complain, I know this is required and that they would love this to be over as much as me. The needle goes in, but then because they don't immediately access a vein they move the needle around underneath the skin and that pain is excruciating. I grit my teeth and close my eyes, but the tears still manage to escape and after about 2-3 minutes this attempt too is given up. The nurses leave to find my spinal injection doctor (my nurse feels so bad she is hugging me and apologizing, which just makes me feel even guiltier). The injection doctor feels quite confident he can do this, and he makes a similar attempt on my right hand for another few minutes of digging with no success (and now my head is pounding, along with the pain in both hands). They page the doctor who is known as the infusion specialist and after a ten minute wait, he arrives looks me over and believes he can find a vein in my wrist if I will promise not to flinch.

Now I am holding up the other patients who have started their infusions and will have to wait for me to get a ride back to the hotel. So now I not only have guilt for my tears and causing all these problems, but I am holding everyone up. So to make a long story short (and how is that possible at this point) - after a few minutes the doctor found a vein in my wrist, which I now know is every bit as painful as the hand, but it does mean success.

Another interesting realization over my two years of infusion difficulties b/c of my small veins - is the medical communities lack of awareness of this pain (among other pain). They seem to think the pain is from the needles (okay that does hurt). But for me the pain is the burning sensation of the needle being in the vein - and that doesn't stop once they get the needle in but lasts the entirety of the infusion and only ends after the needle is removed (and in the case of my hands usually lasts a few hours after - with major bruising for at least a week). Moving my hand, covering it with a blanket or a heating pad while the needle is in - causes the pain to be intensified (I actually see dots of light), and I know they are trying to help but enough already. Even the most excruciating pain is doable if you know it will only be for a fixed amount of time (just a lot of slow breathing and counting). So when the doctors in each case, suggest leaving the port in for several days until my next infusion - they only are looking at it from a difficulty of the medical provider, the idea of that pain going on over 24-48 hours can push me as close to hysteria as I have ever been.

So enough of my rant - I am fine. Stem cells are in without a reaction. Okay, other than the four pieces of gauze I still have in place to staunch the blood from the veins that popped or rolled) and now have a lovely day of PT only before my return on Thursday for my last spinal injection of cells(#8) and stem cell infusion (#2). On the bright side, it can only get better - now that I (and the docs) have had this test run.