Wrapping My Head Around the Number of Meds I Take
Every morning and evening, I pull out my big bag of medications. The evenings aren’t as bad as the mornings. For the second round of the day, I take fewer meds, and I’ve had the entire day to accept that I must take them if I expect to help my body fight for some semblance of health.
It’s a mental challenge to take all of these pills. I was never one to solve my pain problems or other ailments with medications. Hot toddies, leafy greens, hydration, and rest have been my go-to regimen for much of my adult life. Then came lupus, and now not only are the medications never-ending, they’re also cruel and harsh in their effort to help the body.
I tend to insert humor into everything I do, especially in stressful situations. For example, I call my steroids “Almond Joys,” after the famous candy bar. If you are in the U.S., you may be familiar with the candy bar’s commercial jingle: “Sometimes you feel like a nut, sometimes you don’t!”
I refer to anything in capsule form as jelly beans. (I don’t have any small kids around that could overhear this and become confused.) They are not fun to swallow.
In years past, I have not always been so strict with my medication regimen, because I hate taking all of these things. It seems like whenever I go to the doctor, I am given something else for the latest development. So, what started as two pills has crept its way up to nine.
As a result, my bone density has been affected, my ability to fight off infections is completely wiped out, and my ability to be out in the sun is no no longer. These medications do good, but they also impact my way of life in negative ways. Remembering the good they do can sometimes be difficult.
I need to remember that by taking my medications, I am doing more good for my body than bad.
Kellie’s daily medication regimen. (Photo by Kellie McRae)
The other issue I have with these medications is that they don’t always work. I’m sure there are plenty of lupus warriors out there who can name a million and one medications used to treat it, because the cocktail is always being changed. It takes a while for the medications to build up in the system, and once they do, they must be given a chance to work at their full capacity. After that, you will learn if it’s the right medication for you.
The most recent addition to my drug regimen literature says it will take up to 12 weeks to see any progress. If it has no effect, then we’ll try another drug. For someone like me, this is akin to torture, because I just want to eat plants and have my body heal itself.
For the past five years, I have eaten a vegetarian diet or been entirely plant-based. While I like eating good, fresh foods, sadly, my body still requires medications. I just have to do my best to have the best frame of mind when it’s time to take them.
I also take vitamins for anemia and certain deficiencies, but the idea of having to get these things from sources other than food still throws me off a bit.
How do you deal with handfuls of medications? Have you come to accept that it is part of your daily life, or do you struggle with taking your meds, too? Please share in the comments below.Â
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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Comments
Maureen
Hi Kellie, While I don't take more than 2 meds I can appreciate your story. I too was always a health nut, never took meds...healed myself with food, yoga etc until Lupus hit.
So yes, it also took me awhile to accept that putting these chemicals into my body was necessary. On days when I forget one here and there I then deal with the fear of what 'missing that med' may do to me?! if anything. My Rheum recently prescribed Benlysta Injections. My insurance Co. denied it.
I received the EOB yesterday...the med is over $4,000 for 3 mths. and my copay would've been very high anyway. So, my decision is made for now re: that. I've heard that the med company give grants to pay for your med etc. but I just don't have the drive to work on all of that. Perhaps my mind is happy it got denied?! LOL. Keep strong Warrior. I send you love, hugs and support. Maureen
Kellie McRae
Hi Maureen, I'm glad you have a good attitude about them denying the injections. It really is hard knowing that you are doing yourself harm as we are trying to stay "well". Almost seems counterproductive but our minds for sure, must be overcome as well. I am sorry that your insurer denied it, I have my own gripes about that kind of stuff...another article lol But I am sure you doc will have an alternative. Glad you are only taking 2 meds, sending you good vibes that it either stays that way or decreases.
Judy Marley
I concur, after several years of trying various drugs I now have a regimen which together with my vitamins is a lot more of pills, but without them my immune system would go out of whack. I also eat many leafy greens and vegetables and fruit, this was an easy choice as I never was a big meat eater.
A positive attitude and some form of exercise is so beneficial and I am fortunate to be able to do that.
Kellie McRae
Hi Judy, you said so many good things here. BUT to me, one of the most important things is indeed having a positive attitude. This can really beat you down mentally and having a way to try to pick yourself up again when you can't pick your body up is very important for sure.
Brenda Trapasso
I wish I only had nine bottles of pills. Lol I’ve got a basket full and a port in my chest for infusions. Like you the side effects are sometimes horrible but they do help. The frustrating thing with lupus/RA is its all trial and error to see what works.
Kellie McRae
Hi Brenda, Its the trial and error thing that bugs me as well but with lupus affecting us all so vastly, its not like taking a tylenol, pretty much EVERYONE will get some sort of relief from a headache if they take one but lupus, you don't know what the heck will work and sometimes it works but only for a short time, then you gotta add more nonsense to the basket. I try to focus more on the "they do help" part. Sounds like you do as well. Thanks for sharing with me.
Patricia Hurse
I take a lot of meds and I hate them. I take 10 in the morning and 5 in the evening. I have osteoporosis from all the years of Prednisone. I'm in pain all day long nothing helps. I was diagnosed in 1994.I admit the last few years have been the worst but I keep going
Kellie McRae
Hi Patricia, so you're like me, a ton in the morning and a half-ton at night. That's how I feel when taking them. I'm glad to hear you keep going, I hope you find some semblance of relief. Stinks being in pain all the time. Sending you comforting vibes.
Fiona
Hi. I'm so glad there is one like me. I was smiling to myself thinking oh boy my feelings exactly. You go girl. Love this piece on MY WOLF
Kellie McRae
Hi Fiona, I had a feeling I wasn't alone. These meds are not fun but we do what we must. Thanks for stopping over!
Elaine
Hi I was diagnosed with lupus in 1985 just a couple of months after giving birth to my son. It has been a long up and down journey. I've had 2 kidney transplants due to lupus nephritis, the last one Dec will be 17 yrs, mitral heart valve replacement both knees replacements, My latest lupus involved diagnosis was 3 years a flare-up in my brain called cerebritis. I've also had intestinal severe bleeding the Gastro said were related to lupus are the meds. Not to mention the horrible flares in between, well to say,it's been a long frustrating 35yrs. With the love of family and the Glory of My Lord and Savior during the ups and downs over the years, I've been blessed. For me it's been all about my mindset, eating as well as possible. Working closely with my doctors and taking my meds correctly and promptly.
Kellie McRae
Hi Elaine, I honestly think mindset really is big. So much happens to our bodies and you've got so many more years of experience with this than I do and I have learned in this short time if you don't get your mind right, nothing else will be right. Its hard making the decision to be positive but it helps us tackle the other nonsense that our bodies go through. Thank you for sharing your story, 35 years is a long time! You have to be one tough cookie and an inspiration to those around you. I appreciate you for sharing for sure!
Carol W Waldenburg
Hello Kellie and everyone! I have had a hate/hate relationship with meds since being diagnosed about 15 years ago. I have a serious gag reflex so taking the larger pills really sucks and I take more meds than my 80y/o mother does. I can get really down about this - I so like how you re-framed the medications themselves as Candy! That will help me. I Have to do it.
I have had such an unhealthy relationship with medications that at times when I have felt very down and hopeless about the future I have stopped taking some of them - especially the big tablets that are difficult to swallow. That's a VERY bad thing to do and I know self-sabotaging and punishing. If I don't take most of my meds for two days I am SICK, SICK, SICK, and unable to function - it amazes me how bad it becomes in only 48 hours. I get scared about this fact too - God forbid I was somewhere caught without my meds - I literally would not survive. This is indeed a horrible disease that robs you of more than you could ever guess when you're first diagnosed.
On a happier note - I have never gone to the "poor me" place and been very angry with the universe, God, my parents (for my genetics) . . . I've always thought Why Not Me? This attitude helps me through the bad times - this and the support of two bestest friends. This is a must, must, must for us - we must be open with at least 2 people who we don't bullshit about how we really feel and who we can really go to when it is THAT bad.
Don't give up my sisters AND brothers who suffer from this. There are dark, dark days, but we can do this with each other and by refusing to let ourselves give in to the BAD like not taking our meds!
Carol
Kellie McRae
Hi Carol, You and I are def having the same battle. I have at times not taken the meds but now I have suffered those consequences, I am always looking for ways to get over the icky feelings of taking them. Those big ones are the worst. I call them throat openers :-/ I try to take them first and get them over with. I started buying applesauce and found that helps but I don't always have it available so I just grin and bear it. Its good that you never went to the poor me place, from your last response, I didn't feel you would be the type of person to get bogged down in a pity party. I have my moments and when I feel I am stuck there for too long, I reach out to my therapist. I appreciate your words of encouragement. We could def all use some pick me up help from those who understand the things we deal with. Thank you!
Carol W Waldenburg
Kellie, I was reading again about your story and I believe you live in Mexico - yes? I speak conversational Spanish, love the Latin culture, food, music, etc... I have thought about moving to Mexico - Isla Mujeres in particular - and also some Central American countries. One of my biggest fears is, of course, my medical issues/needs/meds/etc ... Could you shed some light on this, please?
Thank you, CArol
Kellie McRae
Hi Carol, I keep threatening to visit Isla Mujeres but I'm such a homebody that I rarely venture out when I really should. As far as healthcare, I have a mixture of what I do. I do much of my maintenance things here in Mexico, the care is wonderful and then I also get a lot of things done at the VA that is more preventative I guess like mammograms and such. I do this primarily because of 2 reasons, I'm self-insured and for my benefits to stay active with the VA I must use their facilities from time to time so I schedule appointments with them when I am visiting friends and family. I definitely encourage you to do the research on the area where you want to live, also check with the farmacias to be sure they have your medications. I recently had a situation where one of the medications was really difficult to get and I was without for 5 weeks. My rheumatologist here (in Mexico) stepped in and The Lupus Foundation of Merida got the meds for me, told me how to get them next time I was low but in the interim, I went to the States and got a refill from the VA. If you are concerned with the facilities, I don't know what is available in Isla Mujeres but here is a video where I did a tour of the hospital here that I use.
Marilyn Shoults
I have been diagnosed with lupus for 30 yrs. My meds have changed so many times either because they have not worked, or concern for side effects. Started with aspirin, loved predisone, my pain eased and helped with energy. I was so upset when the doctor would no longer prescribe it, I had a huge weight gain and developed Type 2 diabetes. I have taken biologics, narcotics(no longer),pills to sleep, I take IV Rituxin,1/2 dose every 3 mos because,the full dose wears off around 4mos. I take vitamins, and it takes me an hour to fill my pill boxes. I have to try to not feel like a failure as a wife and mothe, and most days do well.I will have to say, there are things that will sound crazy, but lupus slowing me down,kept me from pushing my life working to the max and missing out on my teenagers life as they grew into adults.And spending time with my husband. But,I still grieve what I have lost to the"wolf".The NSAID's I took caused GI bleeding and the resultant scar tissue resulted in an ileostomy,gastroparesis. I was independent and now my husband has taken over things I used to do and he never complains. So, tho I hate what lupus has taken from me. My energy, brain,and my hair,my colon. Oh,yeah!the money I spend on meds and doctors. But,I am thankful for realizing the things that I do have.The unconditional love of my husband,children and friends and a closer walk with the Lord.