Friday, September 28, 2012

So Many Needles…

Writer, ms.about.com
 
This evening as I was going through my nightly ritual, I thought about a blog that I wanted to write about relapses. My mind was busy writing and rewriting the introduction as I automatically washed my face, brushed my teeth and prepared my syringe to give myself my nightly injection. The shot went relatively smoothly, with the sharp pain registering intensely, then quickly receding to become a dull throb when the needle was removed.

I then dropped the used syringe into my large red sharps container. Except it didn't fall in when I released it, but protruded from the top of the opening about a quarter of an inch. My container had become filled to the top with used syringes.

I wanted to shake the container to see if I could make the syringes inside settle, giving me a little more room. When I pulled it out from under the sink, I was shocked at how heavy it was. Once I got it on the counter, it also seemed much bigger than I had expected. And it was full – a couple of shakes did nothing to make more room.

I contemplated the sharps container in the bright lights of the bathroom and unexpected emotion surged in me. This big red box was heavy and full of little bits of daily pain that had accumulated over the past year and a half, injection by injection. I started going down the "why me" road, but decided to be proud of myself instead. This container full of syringes represented many moments of overcoming the self-doubt that had told me I couldn't stick myself one more time. It represented staying with the treatment path that I have chosen, even when I had strange reactions and lipoatrophy that disfigures my body. It was concrete proof that even though I might "look so good" to the outside world, I have a disease that compels me to stick a needle in myself every day.

I also thought about how strange it is that no one besides my husband would see the container full of syringes. I wanted to show people, to put it in the middle of the table during a dinner party and say, "Let's talk about this now." But I wouldn't ever do that. Besides the fact that it has a biohazard sticker on it, making it an inappropriate centerpiece, I think it would also be profoundly disturbing to people who know me, although I can't put my finger on why that would be. It is just too tangible, too real, and maybe too intimate to be whipped out and passed around.

In the end, I stuck the container back under the sink, figuring that I could force a couple more syringes in there before needing a new one. Instead of writing my intended blog on relapses, I decided to write this blog about my experience with my full sharps container.

What about you? Go look at your sharps container. Pick it up and give it a shake. Peek inside. What is your reaction? Would love to hear from you.
 

43 comments:

  1. 20 years of sharps containers....how many have i disposed of? IDK

    ReplyDelete
  2. Do the injections make you feel better? I was recently diagnosed am a leaning towards not trying the shots due to the side effects etc. As of now, I am able to "live" without needing them.

    I love how you said, you would like to put it in the middle of the table at the dinner party. I feel the same way, why does everyone think they shouldn't bring MS up? We want to talk about it!

    www.chicagonow.com/upsanddownsofayogamom

    ReplyDelete
    Replies
    1. It sucks to stab yourself everyday...but i'm on copaxone which is a daily shot...the only side effect is at the site,once you get used to it it's really not thad bad..my advice is if you were diagnosed recently do treatment you'll have a better chance at living a normal life..ms is an unpredicable disease...you never know when an attack might happen...you not being on treatment,you may be able to a week,amonth, maybe 5 years with nothing happening..but i wouldn't want to take that chance..good luck with your decisoin...hope this helped:) It's not an easy road..but have faith..my biggest fear in life is needles,ironically i've been stabbing myself for a little over a year,i'm proud of myself.

      Delete
    2. Between my Step Mom and I we estimate that together we have injected ourselves 4,163 times, with 3 of the 4 major treatments out there. My Step mom and I both have MS and she has been on Avonex for about 16 years (has NEVER missed a dose) and I started on Copaxone for 5 years, stopped after 4.5 to get pregnant and have my son, after my son I was hit with a huge relapse (and I think it was only because I stopped treatment) so I started Rebif and stopped that just short of 2 years. Up until this year I have had major relapses every year since my son was born! Only downside of the shots was my pale fair sensitive skin HATED the injections, I'd get HUGE welts that lasted for days then would turn to bruises, and the worst part was the atrophy all over my body! I was doing shots daily or every other day for years. Since I was diagnosed at 22, I am still young and like to be in bathing suits and hang out with friends during the summer but Injecting myself around 2000 times took its toll and I have atrophy in my stomach, hips, legs, arms (its worse in my hips and stomach because those were the not so bad spots to inject because there is a little more meat there, so when my arms and legs were sore and I would go to a hip or spot in my stomach that I hadn't done in awhile so I wouldn't hurt so much) then having to explain why you have what looks like a GIANT ANT BITE on your stomach to your friends always opens up the "I have MS and I have to give myself shots..." conversation when your just trying to have a good time. You can try to time the shots so it'll be after your plans or try to do the shot in a "Hidden" spot but it never works, someone always sees it!

      On a good side they make autojects so all you have to do is load it an push a button so really you never see the needle and the initial shot doesn't really hurt at all its the burning or itching after at the site that kills! I don't want to sugar coat anything for you so I apologize if it seems harsh because that was my honest to god relationship with the shots it sucks but that’s why we are fighters if we are strong enough to put up with the obstacles and what if's MS throws us we can handle these small speed bumps to stay strong.

      If you think about it the shots and the possible side effects that you may or may not experience is one of the only predictable things about MS that we come to expect therefore we gain control over a small aspect of our MS. Yes you know its going to hurt after its done but tell your self I'm going to do it anyway because I know this pain will end and by sticking with treatment I am taking another step to control MY MS because IT doesn’t control me! From my own personal experience getting on a treatment plan (no matter which one you choose) will give you the strength to fight, hope for a cure, courage to smile and support from so many. All of this is built up by treatment because you discover what you never knew you had.

      In case you were wondering I have been on Gilenya (1st oral treatment) for almost a year now and I feel remarkable, no major relapses to report and my MRI has no changes!! If you (or anyone) wants to keep in touch, need a friend or just want to vent shoot me an email heatherize.it@gmail.com

      Many I Love Fight MS,
      Heather

      PS I used an empty XL Hard Walled Kitty litter container for my sharps and because you could sort of see through it, and I didn't have much space to hide it, it often became a favorite musical instrument among my friends, it does carry a nice rattle sound when half full :)

      Delete
  3. I have just started my treatment and am finding it really tough have thought about quitting loads of times already. Don't like the awful sting and the feeling of the needle coming out. But I have every reason to hope and pray that the stuff I am pumping into me will have some kind of effect my one year old baby daisy I will not let this disease beat me.

    ReplyDelete
    Replies
    1. Do you ice up before and after the injection? My MS nurse gave me that advice when I began my injections in April 2011 and it helps me tremendously. As well as switching to a smaller size needle and taking two Advil and two Benadryl before hand to offset the physical feelings side effects (flu-like symptoms for some). Good luck!

      Delete
  4. I have just started my treatment and am finding it really tough have thought about quitting loads of times already. Don't like the awful sting and the feeling of the needle coming out. But I have every reason to hope and pray that the stuff I am pumping into me will have some kind of effect my one year old baby daisy I will not let this disease beat me.

    ReplyDelete
  5. I have been doing Betaseron for about 5 years now, and my disease has barely progressed. The evidence is pretty clear that if you want to stay mobile and healthy, your best bet is interferon treatment. Once you get used to it, it's really not that bad. It's just a small, unpleasant part of the day, and really not a big deal. Consider, diabetics inject themselves multiple times per day!

    ReplyDelete
  6. I see my collection everytime I open the fridge, I hadnt yet got a sharps container when i started my injections, so I used a 2 liter bottle. When that filled, I dropped them into a vase on top of the fridge. It doesnt seem like alot, but then you pick it up and that puppy is heavy, and i see a flower arrangement of needles in a vase packed so tight you could just about hold it upside down and they wouldnt come out. Sometimes I want to showcase them as well- as to say "look what the heck I have to do to myself!" I think because each time I have to inject myself I still am nervous, i still have a glass of wine or three to get up the nerve,and because I still turn my head the other direction as I plunge the needle in so I dont have to see it- each time it still feels like the first time and thats why I didnt realize how many was in my collection. I'll be getting one of those containers

    ReplyDelete
  7. Every time I use the injection it's a sharp pain that just reminds me of MS. My husband was sitting next to me once when I was taking the shot. I made a face as usual when the needle hit and threw it away...all in the days work lol. I was quiet surprised when he looked at me and asked me " does it still hurt?" After 4 Years I just looked at him and said a prick is a prick if anything my skin is more sensitive to it then before because of the constant bruising. MS is something that I hate but at least I am still around. For better or worse this will not stop my life...it will make me value it more. I stick to my needles but they are also a reminder of studies working toward this disease. Ironically it is increasing in this world but that also means its increasing the studies towards a better tomorrow
    And tomorrow is a better day cause I am still around to see my kids grow and I am still around to thank the new day with a relapse or not I am still around...can't ask for more

    ReplyDelete
  8. I was on Avonex for 11 years and used the big red sharps container as well. I have just switched to Copaxone because of some liver issues and am pleased that the sharps container now is very small! You just snip off the needle into this little device which will hold 3,000 I think. The rest of the vial can then be thrown in the trash. In 11 years, I have gone through a fair share of sharps containers. I don't think I've ever had a visceral reaction to it! I'm not necessarily enjoying the daily, stinging, burning shot and hope to maybe go back to Avonex at some point. they now have a "pen" to use to inject, I see. Yeah, I am committed to doing this. I have to be. The few relapses I have had have not been pleasant and if I weren't on the medication, who knows how much worse they might have been! Keep up the good work!

    ReplyDelete
    Replies
    1. I started Avonex in 1997 and when I heard about the pen I was excited... until I used it. It's a lot bigger than the photo and very plastic. To get the needle to inject you need to push the pen down on your leg and then push the button. Sounds easy. It wasn't. The injection is not as smooth as the auto-filled. I do know that this is a new product and in time it will be better.

      Delete
    2. Oh, I forgot. You need to put the WHOLE pen into the Sharps container. The container I had would only hold 2.

      Delete
    3. Thanks for the info! After 11 years of self injecting I got pretty efficient at it. Good to know maybe the pen isn't necessarily the best thing since sliced bread!

      Delete
  9. When I first started injecting 16 years ago, I used the empty laundry detergent bottles so I wouldn't have to pay for a container. It smelled good every time I'd open it to dispose of a sharp. Now they send the ugly red ones free with my Copaxone. It sits right beside my bed because my shot is the last thing I do before I go to sleep. I wish I could count how many I've gone through, but it really doesn't matter. It's just a part of my life now.

    ReplyDelete
  10. I loved this blog! It is sooo true! Thanks for sharing what I feel. My disease is invisible to others and the treatments hidden. I brave it alone in the bathroom every night when everyone else has gone to sleep. Sometimes you feel like crying, sometimes you feel like shouting "good job" and sometimes you feel like telling the mirror how proud you are that you've stuck yourself again, but you always feel the ouch. When I show my family or friends my injection sites, the look on their faces.... I will suffer in silence as long as I can, and be thankful my disease remains invisible. Thanks for sharing how it feels though when you look at all those empty shots. 1,800+ and counting. :)

    ReplyDelete
  11. I have been on Rebif shots 1 year now. At 1st it seems overwhelming and at 1st i had a panic attacks giving it to myself and wondering if my body can take it. I was overwhelmed to say the least. Now, it has become almost routine and now that i'v'e mastered the injection somewhat and my body has adjusted to the medication, i am so grateful that it exist. I'm grateful that scientist would choose this as their career path to make our lives better. My recent mri showed unchanged. This desease for me is mind over matter. Choose to find the good around you and do as much as YOU can to help others. Just know your limits and when you need to rest, then rest. I don't think my days will ever be the like they used to be, but it is comforting to know so many people are out their helping each of us the best way they know how.

    ReplyDelete
  12. I also use the nifty needle clipper from SHared Solutions! They say hundreds will fit in there. I am stil working up to 365 :)

    ReplyDelete
  13. Just passed 5 years this month. I use a HUGE plastic container to store used Rebif needles (I think it used to have animal crackers in it!). I pull it out every now and again to see how far I've come. Literally and figuratively.

    ReplyDelete
  14. I was on copaxone for two years. It stopped working and with the new research on tysabri and the blood tests they do now to see if I had the JC virus (which I dont) I made the decision to go on the infusion therapy. Best decision I have ever made. I would recommend it to anyone. Virtually zero side effects now that we know I dont have JCV.

    http://www.tysabri.com/pml-risk.xml
    http://ms.about.com/od/treatments/a/Testing-For-Jc-Virus-Antibodies-For-Tysabri-Related-Pml-Risk.htm

    ReplyDelete
  15. I filled a couple of milk jugs and dropped those off somewhere to be disposed of, can't remember where. A hospital I think. Then somewhere along the line I got an actual sharps container which is 3/4 to 4/5's full. I have had MS for 17.5 yrs. I tried all the ABC drugs, of which, only Avonex worked until my body decided to build up antibodies to it. Then Tysabri came out!! I was so excited!! Then after 2 doses it got pulled for 10 months. When it came back out, while receiving my second dose, I had an allergic reaction and ended up in an ambulance in anaphylactic shock! That was almost a decade ago. Since then my Dr. and I have been treating me symptomatically. Which means I now have, in addition to my neurologist, a Urologist and a Pain Dr.. Three specialists at double the co-pay, for a person receiving SSDI. Not the greatest, but they have me still functioning, somewhat. I rarely leave my house. But, when I need to, I do...with the use of a cane or a walker or a wheelchair. I did receive a powerchair last year. I now just need a handicap accessible van to haul it around. Or get signed up for Flextran. Although, I do hate asking for help and avoid it at all costs. I have never played the pity card, either. To which I say, Good for US!! It is what it is. If I could change it, I probably wouldn't. I know the disease I have. I know my limits. I am, for the most part, comfortable. Albeit with a SLEW of medications! But, I am making it! Day by day!!!

    ReplyDelete
  16. Just this morning, I packed up another full container for mailing to where ever used needles go. I use Rebif, 3 times a week shots. I do mine on Tuesday, Thursday and Sunday. Most people look forward to Friday. I am happy when Thursday comes, no more shots until Sunday, Yeah! I am lucky. I have a wonderful wife who gives me my shots. We make a routine. She helps me through it. I was diagnosed 2 years ago next month. Does it still hurt? Yes, every time. The bruises are ugly. Is it worth it? You bet. I had an MRI done after a year and it showed no new lesions and the ones I had did not grow. I have had no relapses or exacerbations in the 2 years. I hope it stays that way. I am riding in the Bike MS Bay to Bay Tour 2012. Check out my page: http://main.nationalmssociety.org/site/TR?px=8925558&pg=personal&fr_id=18684 Thanks, Brenda

    ReplyDelete
  17. No mater who i've called can't find away of disposing of my sharps containers.......

    ReplyDelete
  18. I guess since I just got diagnosed with MS it has yet to occur to me to hide the big red box, but of course I live alone so that may have something to do with it also. It sits atop my refrigerator for all to see when they walk in my kitchen, my meds have their own shelf inside and I don't hide the fact I take the shots. I guess it is easier for me to just put it out there and let that do the speaking for me so I don't have to explain anything myself.

    I should think about moving the big red box to under the sink or in the closet I guess, but right now it is keeping me sane and reminding to take my shot each morning!

    ReplyDelete
  19. Sick and tired of needles, yes!!

    I am almost 2 years diagnosed, November 2010. I tried Copaxone and after a few months wasn't doing well on it, let alone hating the daily ritual. Next I moved on to Tysabri. I wasn't JC positive so that was good. After about six months my Dr had me take an antibody test because she suspected I had become allergic to the Tysabri.

    I received an email while on a trip to Peru to not have any more infusions (I was due the day after I got home) because I had the antibodies. Now, after a few months respite to empty my body of the Tysabri, I am trying Avonex. The idea of giving myself a shot without the pen terrified me. I need to titrate the first four doses with a regular needle.


    With the nurses training it wasn't so bad so I think I will make it through until I can start with the pen, 2 more shots. My brother has been on Avonex for almost 11 years and just started giving himself the shots when the pen came out. He's a big chicken. And why not if a nurse would do it for him.

    I also am getting monthly IvIg infusions, so I have several different big red boxes and now a big purple one for the Avonex pens. I was wondering where a good spot to keep it would be and now I know- under the sink!

    ReplyDelete
  20. I have two bio-hazard containers almost full and looking at it is a constant reminder of what I have to go through. I never am able to forget I have MS but through the grace of God I am able to get through it. God blessed me with a wonderful husband who is willing to give me my shots and when I am having a bad day and don't want to take it he reminds me why and that I can't ever give up. I have been fortunate so far with not having a major relapse. If and when it happens I will deal with it. But I try to remind myself the injections are helping me not have a relapse. My advice is to keep your head up and looking forward.

    ReplyDelete
  21. Yep Julie mine is at that point right now. I’m on Rebif and do my shot every other day. I have been doing it since 2002. You have me thinking about how my container represents a part of my life that I never thought I would ever have to experience.

    I sometimes don’t do it because I get sick of it, however I know that is not the answer and stop doing that. Thank you for sharing Julie.

    ReplyDelete
    Replies
    1. I'm grateful to my Sharps container and Biogen to still being vertical! Amen :)

      Delete
    2. Charity Lee
      Arlington, TX
      Dxd 2001

      Delete
    3. I'm grateful to my Sharps container and Biogen to still being vertical! Amen :)

      Delete
    4. I'm grateful to my Sharps container and Biogen to still being vertical! Amen :)

      Delete
    5. I'm grateful to my Sharps container and Biogen to still being vertical! Amen :)

      Delete
    6. I'm grateful to my Sharps container and Biogen to still being vertical! Amen :)

      Delete
  22. Hi Julie. This resonated with me, and I got a little emotional. Thankfully, I don't have to inject myself because I am on Tysabri. However, I fear that I might have to one day. I appreciate that I can just get my medicine once a month, and then when I walk out of the facility I can forget that I am sick. However, I know what those moments feel like when something catches your attention and BAM, you are reminded that you have MS. I live in NYC and recently when I was riding the subway I saw a poster promoting BIKE MS. In that instance, I was slapped back down to reality and reminded that she, I have personified "MS" as a female, is trying to dominate me right now. I started thinking about how unpredictable the disease is. In my mind I heard a sinister cackle, like Maleficent the Mistress of Evil from Sleeping Beauty lol. My mobility, among other things, is threatened. I feel like this is a war. My sadness became anger, and then my thoughts of doom were interrupted when I arrived at my stop. Independently of those fleeting lapses of dialogue with her, I refuse to give up control and be her subordinate. Keep your blog coming, I like it. 
    Best,
    Charise

    ReplyDelete
  23. Julie I chose 2 1/2 years ago to get a BD needle clipper that still is going and not filed yet! So I don't have a large red biohazard bin to remind me every day how sick I am. This is clipping off the part that is biohazard and when done that is disposed of. So I don't have a big bin as a constant reminder . They are only a couple dollars and you can get it Walgreens etc. I got mine on amazon .

    ReplyDelete
  24. Julie,
    I was diagnosed a little over 2 years ago and give myself a daily shot. I too have kept my shots, from the beginning. I do not have a sharps container so I put them in 2 liter bottles on my dresser. I have quiet a few now and keep thinking I would love to find a way to make something of them as a tribute to never giving up. I would love to melt down the glass and make some sort of sculpture, but not sure that is possible. I approached a glass sculptor about this and his response was just a look of horror and to say it would be a hazard to his health. I keep on saving them, hoping I will find a way to create something beautiful with them some day. Thanks for your blog, you often say exactly what I am thinking.
    Heidi

    ReplyDelete
  25. was taking avonex then rebif for 16 yrs. As long as dmds work is the key. can deal with shots as long as disease is stable. unfortunately many slip into spms.

    ReplyDelete
  26. I used to take avonex once a week. It wasn't working out, I ended up having more relapses. Now, I'm taking rebif. The bad part is that after a year of rebif, I had two attacks in a row just last month. I might have to switch to tysabri.
    I'm lucky that my parents get rid of the needles as soon as they can, my sharps box is full of stuff from my last steroid infusion.

    ReplyDelete
  27. I assume you are taking Copaxone. Why aren't you using one of the needle clipper containers that are usually used for diabetic needles? I just clip off the needle and throw the rest in the garbage. Easy, and no more piles of Sharps containers. Just sayin.

    ReplyDelete
  28. I enjoy reading everyone's comments. I have been diagnosed for 3 months now and on Copaxone daily. I use the needle clippers. Our local Wal-Mart has them. It's great to clip it and be able to throw everything else right in the trash can. However, working in the medical field I know that our local hospital disposes of sharps containers for our patients. You might check with them.
    ~Stay positive and strong! The best is yet to come.~

    ReplyDelete
  29. I get angry !.. I do extavia every other day. always a sore spot. I was just diagnosed with MS 11/29/11 at age 41. My husband helps because I can not stand to do my own shot. I watch my kids pretend to give me a shot with their toy medical kit. Mom's "new normal".. anyone else dislike those words.
    I know it is helping. but it still makes me angry that I need to do it. get I still get the " why me" . Selfish I know, Guess I am still learning how to cope.

    ReplyDelete
  30. This comment has been removed by the author.

    ReplyDelete
  31. First, after I give myself a shot I take the "plunger" out of the syringe and toss it. Second, I put the "safety cap" back over the needle. Third, I take what looks like a pruning shear but is actually a scissor-like device sold to slice through even the toughest blister packaging like what calculators usually get packaged in -- I use it to snip off the head of the needle and that's what I toss in the sharps container. This technique may seem like a lot of work but it isn't. The whole "cut n' toss" procedure takes less than a minute, maybe only 20 seconds if speed is an object. With this technique it takes at least two years to fill up the container and the container is not all that big. It was the freebie the doctor sent me home with.

    ReplyDelete