I just realized today for the first time in months that I remember what I did for my 16th birthday. I remember going out the Sunday before my sweet 16, and seeing Pirates of the Carribean 4, the plot of the movie with how shockingly good it was, even getting Jordans ice cream sometime in there, and eating at Friendlys. Tyler was away on senior trip, and the Lakes Region Health Fair was the day before (when Jake, Elisabeth, Ian, and Kaity showed up to see me). All the memories are falling into place where they belong, and the wall in front of them is slowly breaking down. On the third week of Rocephin, I already see miracles happening. I'm walking and talking normally, thinking fairly clearly, sleeping a bit better, and remembering again! Praise God, and hopes that I will only get better from here on out.
The last birth control I was on was for the ovarian cysts. This time around we are trying a contraceptive called Seasonique which stops the cycle and would treat the symptoms and pain of endometriosis. Hopefully this will work better than the last one. My ultrasounds have all been clear and not found any evidence of cysts since the initial cyst and surgery. We just are at the last rope and thinking maybe some endometrio cells escaped from the surgery or maybe the Lyme has caused my womanly parts to form endometriosis from all the inflammation and cysts. Therefor I would have pain all the time like I do, and some cysts like I have had, and a contraceptive that stops the cycle for 3 months should help. Now its just a waiting game to see if it works.
Its the third week of Rocephin treatments now. I notice no improvement other than the pain I had shooting down my elbow from the Picc procedure has diminished. It started getting better after 5 days of heat packs and ibuprofen. I'm much more comfortable with moving and using the arm now, and even sleeping on it. Though it took me 2 weeks to get a real shower and the wrapping it up process was not fun, I have adjusted. My mom does the IV treatments every 12 hours for 4 days a week. Shes comfortable with keeping it clean and we are careful not to get the tip dirty. We have a fold up light weight side table or TV tray that we cover with the medical sheet and use for our treatment area. When the weekly VNA (visiting Nurse) comes to change the bandage she likes to have an area to set up shop. We noticed problems with the little blue line kinking because the butterfly was not up high enough to keep it straight, and therefor I had troubles with the IV treatment for a week, but she fixed it so it doesn't kink and I can do things while getting my treatment. Having the Picc in is not the end of the world, its a challenge to not get it wet in the middle of the summer but it is manageable. Now I'm just trying to do visualizations and rest enough to let the medicine do its job.
I have been waiting for IV Rocephin for a long time, with that gut feeling that it would be the magical treatment. My Lyme literate doctor in the state finally started the Picc process and the Lyme Specialist in Vermont sped everything up.
Last Saturday I had my horse show, which was great until I got so tired that I don't even remember the end of the show, going home, or the whole battle with my eyes rolling back in my head and yet again being unable to talk or breath.
Monday I showed up at 9am at Concord Hospital for my Picc Line procedure. It started by wheeling me into the room (I couldn't walk again), changing into a johnny and preparing for the procedure. The whole procedure went like this: Sterilize ten times over, numbing shot which stung quite a bit and didn't even seem to work, going into a vein and stretching it out to find out that one wasn't going to work, going in for a second time and stretching it out which was the worst part of the whole procedure and I was lucky enough to get it twice in one arm, getting it in but it being coiled and not going down towards the heart, first exray: not in far enough, second exray: in too far, pull out 3 cm, third exray: PERFECT! Well it took long enough. 3 Hours and a sore jaw later I relaxed my tight muscles to feel the swelling and aching pain in my arm. I went straight home to put a heat pack on it and take ibuprofen and Tylenol which worked great. Then I was off to the Occupational Therapist who informed me I couldn't be treated until we had clearance from my doctor. The rest of the day I spent thinking about the painful procedure. It did not go as planned or expected and I would hate for someone else to not be aware that the 'little pinch' most people describe might not be the glorious silver lining you receive. What a tiring procedure.
I will receive 2 gm of IV Rocephin for about 30 minutes twice a day, for four days a week. This means every 12 hours (8 am and 8 pm) my mom will alcohol swab, flush with saline, swab again, attach antibiotics, swab again, flush again, and then we are done. Also once a week I will have to get blood drawn and have a nurse change the dressing to keep it clean and dry. That will probably be the one day I wrap it with saran wrap and tape to take a very delicate shower.
So hopefully this works, because if not this is quite the process and struggle. Off to try to upload videos on my you tube account from the horse show and my experiences with the tremors. Hope all other Lymies are getting well and resting up.