Based on yesterday’s evaluation and really paying attention to my body, I realize I’m going too fast too soon. While I *canI go for 20 minutes on the Elliptical, it may not be the best idea for me at this time. I’m now going to pace it at 10 to 15 minute trips aiming at 1/2 mile to 3/4 mile. I can pretty much go for 5 minutes without any breathing or sweating trouble, although my right knee to hip bothers me a lot after only a couple of minutes.
The PT evaluation we mainly focused on my back & hips although we may wind up hitting other areas, but I think if my hips and back get stronger then my endurance will increase. Since I have an elliptical machine at home, they recommended me to come in twice a week and I can work on the Elliptical Machine at home on my off days. They did have me walk on the Elliptical there to see where we started with baseline and I actually went as slow as I did the first day I got on it. My lower extremities were really bothering me a lot yesterday.
My last follow up went so well I didn’t cry when I left. We discussed my muscle & joint pain and my desire to start moving more. This lead to a discussion of physical therapy. I’m going today for my first evaluation. I hope they can help.
How am I doing?
When I compare to how I was last year this time, I am doing really well. I have some energy to do some things which is leaps & bounds of where I was last year this time. My PICC was pulled on December 2nd. They did blood work before they pulled it because they know my veins are something awful and getting more than a vial or two of blood without the picc is torture. It was basically a check to make sure everything was okay and they also did a few (a lot) of nutritional blood work. Something that we never imagined would happen would be that one of the labs would come back so low that it would require IV. My Iron. When I got those results, I just hung my head because I knew what it meant. I’ve had it before. I went in for my first IV last Tuesday and forgot that when it’s been a while that they require a “test” dose – which is 1/2 the amount plus Benedryl. Well, I can’t tolerate Benedryl. I can, but it puts me into a zombie coma for at least 24 hours. Driving is OUT when I’m on Benedryl. So we had to postpone it. We did a Lactated Ringer (since I was on oral antibiotics that week) and simple blood work.
Simple is crazy. We *barely* got enough to do the simple CBC/Chem panel (and they threw on a test for Ferritin just to ensure the first time was right) and the results were a bit tainted because the blood came out so slowly that it could have tampered with some of the results. So my liver enzymes were elevated (which meant I had to STOP my treatment week) and my sodium was low (it always is, especially when I am getting blood from NOT a PICC since I have to pretty much double or triple my water intake to help them get a stick) and my Ferritin was still low (we’re accepting those results as true & accurate since it was the same as the previous test). So I get to go in tomorrow – for a redo of the tests & my first IV of Iron. I am not looking forward to it because basically it causes major memory lapses (the benedryl zombie coma) and I just essentially lose 2 or 3 days. Fortunately I have nothing planned really, but still.
I’ve always been fairly active. That is until I got Lyme Disease. Even without flat out exercise, I was still relatively active through my position at work. You can’t NOT be active and be a preschool teacher. It’s just not an option. However, March of 2014 was my last day at work and the duration of the IV therapy caused me to be very sedentary. A sedentary lifestyle can be just as bad for you as Lyme! But, I didn’t have an option. I have horrible sweats with Babesia and with a PICC line you have to sweat as minimally as possible (don’t want that dressing to get wet) so adding in exercise was not an option for me. BTW: I’ve read that Babesia LOVES to “eat” Iron. That may explains why I’ve now had to go through Iron IVs. Back to the exercise. One thing that I’ve been noticing is that I absolutely have no stamina. We’ll go to the store and my legs & lungs would be winded before I could get into the store. You can’t just jump back into something as if you’d taken no time off so I decided to take it REALLY slowly. We have an elliptical machine that has pretty much collected dust since it was purchased. My husband used it for a while, but then stopped. I began using it on January 13th. I took it “out” for a spin and my first day – 5 minutes. It was bad. My legs were wobbly, my heart was racing, the sweat was horrible and I had only gone a measily – 1/10th of a mile. I collapsed on the couch and cried.
Keep in mind I have a goal – sort of. I am in the process of planning to have a Lyme 5K in North Carolina in May 2016. Last time we had a 5K – I was able to walk/jog the 1 mile. I don’t remember the time I had (it took more than 30 minutes), but I remember the feeling of – at least I completed it. Ultimately the next 5K, I’d like to be able to actually complete the 5K and not just the 1 mile. I have plenty of time to prepare my body for this, but when I saw what it took to only complete 1/10th of a mile – I realized that meant it would take me 50 minutes to complete one mile. My body had gone WAY down hill. There was no way I could even walk for 50 minutes if I was wobbly after only 5 and the “couch to 5K” while would work for many absolutely not an option for me. Some people say it’s too slow, but it’s not slow enough for someone like me. Plus factor in outside conditions and my body wouldn’t be happy. So Elliptical machine it is and I will take it really slow. I am hoping that by the end of February I can use the Elliptical for 20 minutes without feeling wobbly all over. This is at the very basic level – no incline & no resistance. We’ll see how it goes. I am hopeful because I’ve already increased my time from 5 to 10 minutes. I still feel wobbly at the end, but at the 5 minute mark I’m good and my rotations per minute are faster.
There you have it. And btw: last year I tried to use the Elliptical and my legs were so weak I couldn’t even get one rotation. I really should be pleased as punch that I made it 5 minutes that first go around.
I had my PICC pulled on December 2nd.
On the first week, I used both Nasacort & DoTerra Coconut Oil often.
The first two days i used Nasacort twice daily (once in morning & once before bed). I used the Coconut Oil 6 times a day. Once after the Nasacort dried, three to four times in the day and then once in the middle of the night. Then I reduced the Nasacort to once daily (since I realized it was only supposed to be used once per day per directions on bottle). I used the Coconut Oil four to six times per day and the Nasacort once per night for the rest of the week.
On December 5th, my arm started swelling in the center (insertion point) and itching, but by next morning it felt much better.
On December 9th, I stopped using the Nasacort and only used the Coconut Oil. I used it 3 to 4 times per day depending on how itchy my arm was. I did this for one week.
On December 16th, I stopped using Coconut Oil multiple times per day. I used the DoTerra Unscented Lotion twice daily (once upon waking & once upon going to bed). If I had an itchy spot during the day I would put a little bit of Coconut Oil on it. Some point during this week, my dry spots improved. It still itchy & you can still see a bit of irritation. However, compared to the first week it feels amazing! I plan on taking a picture of my arm on Tuesday (3 weeks post pull). – I forgot to take pictures. My arm looks pretty good. There is a slight itching every now & again and it’s a little splotchy in spots, but overall it’s doing well. 🙂
My arm feels so absolutely weird.
I had an appointment at 10am and my nurse called me right back for my blood work. After filling up a lot of tubes, I got to pee in a sterile cup. THEN – I laid down one last time for her to undo my dressing. Now last time, I had mine taken out while sitting up. This time however, they had me lay down and look right. I had to take a deep breath and then she slowly pulled it while I held my breath. Truthfully, it feels a little weird, but it doesn’t hurt during the process.
Typically they use some sort of tegaderm with sterile gauze, but with me – that’s not an option. So she put the sterile gauze on and mummified my arm with coban. She said when I got home I could remove it. I did. It looks so weird! It sort of hurts right now so I’m going to keep it covered for the rest of the day with a small once inch strip with sterile gauze, but the insertion point definitely looks better than it did the last time.
I’m sure it will start to feel more nornal as the week goes on. I called my best friend and said there was something missing from my heart. 😉 Priscilla now has a friend – Nick. Nick the PICC treated me much better than Priscilla the PICC. Thank you Nick!
I had my follow up on Monday the 24th. We discussed my picc line and briefly a port option. However, we both decided that it was time that my body have a foreign object break. My veins are so poor that he wanted to get one last great blood draw before we yank the thing so he left me to hang out in the hallway while he decided which tests he wanted to run. He told the nurse and I waited. I texted my husband to let him know it was coming out and continued to wait. He came out to tell me the sad news that they had r un out of the vials they needed for some of the tests he wanted run. The other nurse came over to let me know she requested a rush on the order and was hoping it would come in on Tuesday. They scheduled my blood work and big yank on Tuesday morning.
On that evening (about 5:30PM), they front office staff calls me to let me know that they had not received any word the the vials were going to arrive in time and rescheduled me for Wednesday just in case. They would call me if it did come in, but they didn’t think it would arrive for Tuesday labs. They were concerned it would not arrive even for Wednesday. I tried not to get my hopes up, but honestly they were. I was disappointed Monday night that it was not the last night I would be sleeping with my totally tubular friend. I woke up on Wednesday morning and thanked my dear friend for being not too big of a pain the past 11 months & 11 days – and off hubby & I went.
I sat in the waiting room and then the office lady that called me opened the window and said it would be just a few minutes and apologized for everyone that was waiting. I turned around and said, “quick question. Did it come in?” She gave me an empathetic half smile and said she was sorry but it had not. I turned back around and a tear fell from my eyes. I tried not to get my hopes up, but they were anyway. The reason why I didn’t just leave is that I needed a dressing change because it would not hold up until the next time they’d be open since they would be closed the next 4 days. I joked with the nurse that I shouldn’t have to pay for my dressing change – because it was their fault they didn’t have the supplies – and my line should have been pulled on Monday. She agreed and said they had some supplies donated and they wouldn’t charge me for the dressing change. We decided instead of trying on Monday to try for Tuesday (December 2nd). I’m not sure whether the supplies will be there for the blood work, but I’ve been extremely patient and am ready to have a tube free arm. If it’s not there, I may be taking a 3 to 4 hour trip to Asheville to get the vials myself.