Hi everyone"
I thought I took a lot. Oh yes. I forgot my eye drops and ear drops. My husband doesn't complain about the number of pills or the cost. He's the best. I think i "ll keep him another 53 years.I have confidence in all my drs. until do not, I will do as they say. Have a good day everyone.
Cindy
Kaycie, I became curious so I put one day's worth on a piece of paper like Flutter did earlier so I could get an accurate count. There are 53 pills in the photo, and I take 2 more that are in the refrigerator (probiotics) so it's really 55. :( I have 7 autoimmune diseases, plus fibro, plus Lyme disease and 3 other tick-borne illnesses, plus diabetes, high blood pressure, degenerative disk disease..... well, the list goes on and on. I admit that some of the pills in the photo are over-the-counter supplements and vitamins: vit D, multi-vitamin, Florastor (another probiotic), cranberry concentrate (I get frequent UTIs), curcumin, milk thistle (for my liver, I have autoimmune hepatitis. I'm sure that most of you don't have as many diagnoses as I do, and I hope you never will!
I traveled to St. Croix a couple of months ago and I took my pill organizer with my daily doses but I also took the original bottles just in case. No one even looked twice at them. You are supposed to be able to take your pills just in an organizer type thing without the bottles but I am leery of the (very few) over zealous TSA agents. I did have one agent search through my hair (I have plates in my head and I guess it lit up their new scanner.) Whatever you decide, I would most definitely take the original bottles on all controlled substances and always keep your meds in your carry on.
M_rod424 said:
18 for me too. I have two that are critical and could cause hospitalization if missed. I hate it too, but fortunately my husnand is wonderful. about helping me fill the monthly box. What concerns me is that we are traveling abroad and everything I read says pills need to be in original containers. Even if I get the smaller size bottles it will take half a suitcase. I purchased a sorter envelope and thought I’d just take copies of the script from the pharmacy but now i don’t know. I planned to take all controlled substances in original containers. Nay suggestions?
WoW ~ I feel so much better now.
Sorry you have to deal with so many different medications. How in the world do you ever keep up with it all. (((HUGS)))
JoAnn O'Linger-Luscusk said:
Jen, So sorry to hear you join the medication festival that turns out to be NO fun but you know you still want to fight Lupus!!
I’m now 44 and take 12 pills daily. Officially diagnosed at age 28, but started going to Drs at age 20 & unless you actually see a Rheumy docs have no clue about Lupus or what it is. Funny thing my regular Gen Practioner figured it out due to the fact I had the same symptoms as his own sister w/Lupus.
Back in my 20s all I really had trouble w/was terrible joint pain, sometimes, I couldn’t walk across a room. At age 31 I had my 2nd child and had a very healthy pregnancy, baby was even 2 days LATE! Anyway, after the stressful delivery on my body I had a a month long bloody nose, pluersy in my lungs, blood clot in leg that traveled to my lung.
Then after that it seemed like most Extreme Fatigue set in and to this day gets worse every year.
Then about 7 yr ago all he’ll broke lose, went to bed one night like normal and it felt like 15 min. passed when I woke up very confused in the ER w/hospital gown & Cathator(spell?) and I C my husband and ask what happened…Grand Mal Seizure! Lupus had attacked my brain!!! Soon after seizure I was diagnosed w/hypothyroidism, high blood pressure, (and it’s been low my whole life), then I had a Stroke! I was lucky and came out of that with only migraines for awhile and a life time of coumadin, 3 epilepsy pills, and anti seizure implant, anti-depressant to help keep my spirits up and you can see where other pills fall in. Those pill boxes really do make life easier when you take multiple meds.
Your not alone, we are here for you and know exactly what you mean and what your going through!
Smile Today
LucyLou
I'm at 13 every day...and from 15 to 18 during a bad flare. NO of course we don't like or want the effects of all these chemicals on our body...be it our eyes, our hair, our joints, our spines, our connective tissue, or our organs we can't see. We do it only to manage to endure the ravages of this nasty disease that those not INSIDE us...can't see...experience with us...or feel the agony of. I am on plaquenil and prednisone daily also...plaquenil 2X a day...sleeping meds to offset the hype of the prednisone...which only works sometimes...not all times...folic acid, potassium, Lasix to counteract the swelling and keep my now low functioning kidney functioning a bit better and several others...and I hate it BUT...I like to be able to walk...be it limping and in pain...I like to be able to do 1/4 of the things a normal person my age can do...I like to be able to smile...I like to be able to welcome a visit now and then and NOT look exactly the way I feel.,,,which is usually like hell...I like to be able to do the laundry, feed the pets,bake a cake, hug people, care at ALL...so I take the meds and watch out for the negative effects as much as possible. My alternative would be to lay in bed or on a couch somewhere...moaning in pain... unable to move much and swelling all over my body instead of just my face...with ugly weepy skin rashes, mouth sores, and other agonies...while the connective tissue is eaten out of my body and my organs are attacked viciously. WE TAKE THE MEDS BECAUSE WE LOVE LIFE AND THE PEOPLE AND PETS AND RESPONSIBILITIES IN OURS...AND WE WANT TO MEET THOSE RESPONSIBILITIES AND ENJOY THEM A LITTLE BIT... AS LONG AS HUMANLY POSSIBLE. WE TAKE THE MEDS SO THE PEOPLE AROUND US HAVE THE ABILITY TO CONDEMN US AND JUDGE US FOR IT...SO THEY DON'T HAVE TO SUFFER AS MUCH AS WE DO. WE TAKE THE MEDS TO LIVE...EVEN IF THEY DON'T QUITE GET THAT...AND WE SELDOM BLAME THEM FOR JUDGING US POORLY.. MOSTLY...WE TAKE IT ALL... AND THE SIDE EFFECTS...BECAUSE WE LOVE. END OF STORY.
Thanks Flutter.... ((((((((((hugs)))))))) to you too! Like so many of you I suffer from brain fog and memory loss, so it's hard to keep track. Every Sunday I fill a medicine box for the week with all my meds and it takes me about two hours because I keep checking and double checking to make sure I'm putting the right number of pills in the right places!
Flutter said:
WoW ~ I feel so much better now.
Sorry you have to deal with so many different medications. How in the world do you ever keep up with it all. (((HUGS)))
When my hubby DOES say anything about it...I just say..."When and where did you get your medical degree Dr. Quack? " and I laugh. I am lucky though...that my hubby mostly says it with concern...and not as a judgment. We've been married for 37 years...so he knows pretty much how I was before this disease really lowered the boom on me...and how I am on the meds...so he KNOWS it has mostly helped. I have had this disease for up to 60 years now...depends on which Dr. is weighing in on that...earlier in life there were short flares...and very long remissions. Now...there are longer flares and shorter remissions...and there is MUCH more damage apparent. One thing I am pretty sure of is...I have lived...and will die with this disease. The meds are ALL attempts to make that life more palatable and less painful and damaging...so I will continue to follow that path...and pray it continues to work as well as it has so far in life for me. To do anything less is not being pro-active in fighting the effects of it...in my mind. I would not let ANYONE...Dr.s, friends, OR hubby...deter me from seeking the best possible outcome for myself. It IS after all...my life, my pain, my battle, and my disease. When THEY have had it as long as I have...I "might" take their advice. Till then...as pretty much always with this particular disease...working your way through it is like a maze. There will be dead ends...and passages that get your further ahead...and that is the way I see finding my way through the various meds and treatments. Best of luck to all of you who are dealing with this nasty little hidden disease! Sending you hope and encouragement.
I take 17 types some double, and also breathing treatment, I use oxygen at night while I sleep and artificial tears, so its the meds to live and maintain my current health or die a quick painful death. Any day above ground is a good day.
4 prednisone, 4 cellcept, 1 effexor, 2 nifedical. Beyond that, pain is subjective. I just deal with it as best as ai can. If its too bad, I go home, I go to bed. Right now my biggest concern is breathing. I need to find a Pulminologist and have them figure out what’s going on. My fingers always hurt, but that doesn’t bother me as much as the shaking or fast heart beat. I get nauseous, but the dizziness is worse and I black out at times or get near that point. It’s hard, but I never asked for pain killers because I never gave it thought. In a way, I don’t like the idea of my body saying I don’t hurt if I do hurt. It makes me think that maybe I will end up pushing too hard and too much if I don’t know what my body really feels like. I know me enough to know that if I don’t feel pain, I will not stop. I will work too much and make myself sick. Or even more sick than I am. There are days when I hurt so much I can only cry. Nights when I can’t sleep past pain. Sleep would be the only thing I really would like back.
Do any of you take a pain killer for sleep? That might be something I would like. I am so tired, and only sleeping 5-7 hours makes me so much worse.
Guys, how many of you are working? On disability?
On disability. The last year I worked, I was allowed to work part-time from home... I went on disability in April 2011.
im there too---16 a day
16 prescription pills a day plus 9 vitamins/supplements
I’m so glad I started this discussion. Obviously it hits home for all of us.
I’m on disability and have been since 2006 due to a severe motorcycle accident. I’m positive I had some undiagnosed autoimmune stuff going on then also. I had back issues prior but being flown 40 through the air bouncing face first and landing flat on my back didn’t help. I got to ride the helicopter though lol! They say that a trauma like that can bring out something like this much more quickly. My rheumy actually participated in a study in Europe regarding that.
Yep, know what you mean only too well. I take 9 at night, used to be 10 til I quit taking Topamax, and take 3 in the morning and Duexis two more times during the day for pain. My husband says the same thing when he sees me refilling my pill box. I feel like a pharmacy most of the time. LOL
I've been on Disability since '92. I tried having my own business, an art gallery, for awhile but it got too hard to keep it open enough to make any money so closed it a few years ago. It was mostly a big deduction for our income tax. My husband said it was an expensive hobby. :0)
Mindy Wolff said:
Guys, how many of you are working? On disability?
Hi
I just gave up my small business. I had consignment formal wear and I do formal wear alterations. The fatigue made me give it up. I rest or sleep 17 hrs a day. I do some alterations at home. I do 3 or 4 bridal gowns a week. I'm not too sick (yet).
Cindy
I never use pill organizers. I use drawers and the bottles are up or down for the next round of pills. Pull out the drawers for morning, mid day, evening and night. The respiratory stuff is separate and much easier to keep track of. Ha Ha Ha Ha Ha Ha . . . and I eat organic food.
You have to hold on.
freightliner said:
Hi
I should get some more pills to catch up HAHA!! How do you keep track of so many? I have trouble keeping track of the ones i take.
Cindy