The things that I love to do are going to be greatly hindered, if not right smack at the tippy-top of the No-No List with a PICC line: being at the barn/riding my horse, playing my drums, hula hooping. Though we don't know for sure at this point, I'm told I could possibly have my PICC line for six months. There's no way around the fact that this treatment is going to be difficult and inconvenient.
Someone once told me that I have a very creative way of solving problems. That may have been a polite way of saying that I am headstrong, stubborn and persistent. Lucky for me, in the case of chronic illness, those are pretty good traits to have! They help me to endure when life is throwing lemons (and Lyme!) at me.
If you tell me I can't play drums because I have a PICC line in my arm, I will tell you that the drummer from Def Leopard only had one arm. If he could drums with only one arm, so can I! (Apologies in advance to my neighbors!) If you tell me I can't hula hoop around my upper body, I will tell you I can hula hoop with my lower body. I've even seen people do some pretty cool hooping tricks with their feet!
I don't want to put myself in an environment where I am putting myself at a great risk for infection because of my PICC line, but if you tell me I can't be at the barn, well, my heart will break into a thousand pieces. I will probably show up at the barn anyway, maybe in a biohazard suit or perhaps with my arm wrapped in bubble wrap. If you tell me I can't ride my horse, I will tell you I can still groom my horse. And if you tell me I can't groom my horse, I will tell you I can still bring a blanket and lie in the grass next to her. I will find a way to do the things I love to do. (These same traits make me a rather difficult patient for my poor doctor, sometimes.)
Is it any wonder that today, I randomly came across this quote that I love: Don't let what you cannot do interfere with what you can do. While I haven't quite come to terms with having to get a PICC line, I am taking baby steps toward acceptance and I know that I will find a way to do the things that my heart needs to do to make it through the dark days of treatment. I will find a way.
You are so strong, you can do this! After about two weeks or so I was able to do everything I could before. I was told I could lift light weights for working out if I wanted to. I can lift my daughter, vacuum, clean off the snow on the car with that arm. It just needs time to heal before you do too much. I know you can do this and it will be worth it in the end!!! Love you girl~
ReplyDeleteSo what happens after the PICC line treatment is finished?
ReplyDeleteThanks, Julie! Love you lots, pal!
ReplyDeleteNicole, ideally I will be in remission. If not, I will likely switch to an herbal protocol for as long as I can to give my body a break from the harsh treatment. My doctor really wants me to see one of the top Lyme doctors in the country, who is in DC. At this point, I cannot because of financial reasons; however, if it comes to that, then we will cross that bridge when we get there. Feel free to ask me if you have any more questions or if you need a pony to snuggle! <3
Hi Aly,
ReplyDeleteI agree with Julie, once the initial soreness wore off (about two weeks) I could do everthing I felt like doing. The only thing that has hindered me is an occasional tough herx or manuevering the IV schedule to fit my ideal schedule.
It's a little scary. I must confess, I wrote goodbye letters (just in case), I was worried-not about the actual PICC but where my mind and soul would be when I was so drugged out. And when I start new meds, it takes me a few days to balance myself out but easy peasy compared to what I originally thought. No need for the letters ;-)
I am hopeful this will really help you. It has been a blessing for me.
Thanks, Ginny! <3
DeleteSo glad I decided to check up on your blog tonight because I am facing the same fate! After holding off from the PICC line for the past three years, I have finally given in and accepted that it is the next necessary step towards getting better. I have done all of the orals, Bicillin shots, herbals, RIFE, microcurrent, even IV vitamin C treatments but I am waving the white flag and getting the line put in. I have the same fears that you do so I will keep checking your blog to see how you are doing and I will keep you posted. It is nice to be sharing the journey with someone else. Good luck girl!
ReplyDeleteAnonymous, do you have a blog so I can follow your journey, too?
DeleteSorry...no blog. Never did get around to doing that, although I probably should have!
DeleteI can tell by reading this post alone you will have no issues with figuring out how to work around your PICC. After a week or so you have your new routine and hardly notice it. FYI; Glad Press'n'Seal (saran wrap) is a godsend for showers!
ReplyDeleteMight be helpful; Its a group for 'Picc'ies and 'Port'ers :) ... https://www.facebook.com/groups/310697972297445/
I just learned what Press'n'Seal is a few weeks ago. I didn't think we'd be meeting again like this! Haha.
DeleteI will check out the Facebook group now. Thanks, Firefly!
I am in the same boat. I've been treating with orals for almost 10 months and have fought against the picc line the whole time. Now I am planning on begging for it at my next appointment........ The neuro symptoms have me prisoner. I am happy to follow along with you; it makes me less scared:)
ReplyDeleteHop in the boat! We'll have to make sure our arms don't get wet, though! :)
DeleteKeep me posted on how you're doing and let me know if you have a blog I can follow along.
Hi Alyson,
ReplyDeleteWell, my PICC line is in and the procedure wasn't bad at all. Didn't hurt a bit! My arm was a little sore for a couple days but it didn't bruise or swell at all. I got all of my supplies delivered that day and my infusion company (Coram) has been great! They sent me rocephin in syringes to "push" over about 10 minutes so I don't feel like I am hooked up to something all day long. I give it to myself twice a day. Wrapped my arm in plastic today to take a shower but basically made sure no water ran over my arm anyways just to be safe. So far so good. Next hurdle will be the first dressing change on day 7. I will keep you posted. No major herxing yet but starting to feel increased leg weakness, fatigue and low grade temp which are all normal for me when I am on treatment. Do you have a date yet for when you are getting your line?
Thanks for the update! We are having an issue with the insurance (a problem on OUR end; not theirs) and that is holding everything up. Hopefully it will be cleared up soon so we can get the ball rolling! I've been completely off treatment for 4 weeks! I'm so ready to get the show on the road!! Keep me posted and good luck!
Delete-Alyson
Hi Alyson,
ReplyDeleteMy PICC treatment is not going as well as I had originally hoped. The rocephin made me REALLY sick in the first 5 days (GI intolerance, lost 7 pounds I couldn't afford to lose so I am back down to 102, been in bed for past 15 days) so they stopped that drug and switched me to vancomycin. It is much easier on my stomach but requires me to be hooked up to the IV pole for 3-4 hours a day plus weekly blood work to check levels.
Unfortunately, it seems that the insurance company will only be covering one month of treatment as well, despite the 19 pages of medical records I sent them proving neurological involvement from the Lyme and two episodes of meningitis. So, now the battle begins to get more medicine covered. As of January 25th they will cover NOTHING...no meds, no nurse visits, no tubing, no gloves, not even a single alcohol prep! Like most of us fighting this disease...I do not have the funds to pay cash for all of this stuff.
I left my job in August 2011 because I was so sick and have been slowly burning through my retirement money just to pay for my treatment and support myself and my mother. Don't get me wrong, I am blessed to still have health insurance and I was granted disability so I have a minimal check that arrives every month but I paid more out in medical bills last year than I took in from disability.
I just wanted to update you on the PICC line situation as I know you may be beginning the journey. Like you, I have treated for many years using pills, shots etc before going this route. I can honestly say that I may NOT be keeping this line in for much longer than the 30 days of treatment that my insurance is covering. I know that it is not enough time to do what I need to do since I was bitten 13 years ago and I have been very sick but...the pills and shots were working, just very slowly. I had hoped to give them a little boost with some aggressive IV meds.
However, if the IV meds will prevent me from having a roof over my head, food on my table and will shorten the length of time that I can afford pills to treat my disease then what good am I doing myself in the long run? I guess my point to all of this tonight is to suggest, if at all possible, to plan for the long term aspects of your PICC line therapy, see if your insurance will cover for longer than a month of treatment and don't be afraid to change course or abandon ship if you feel in your gut that the PICC is not working out for you.
Part of me feels guilty for pushing for the line, spending the money already to get it, going through all of this etc just to "quit" now but truth be told...it is more courageous to walk away from a treatment when you know it is not right for you than it is to stay with something that doesn't feel right just to save face. You know your body the best so throughout this journey with the PICC line, make sure that you listen to it. Good luck girl~
I'm so sorry you're going through all of this on top of your illness. This disease is so unfair! If you "like" the Facebook page for this blog, you can send me private messages and we can keep in touch that way. I don't know your name, so be sure to let me know it's you if you do.
DeleteI'm so long overdue for a blog update, but I will try to get one up in the next few days so you know where I stand with the PICC line.
Hang in there, friend!
-Alyson