[teachmom67]

Last night I was filling my med. sorter and I felt really down about the number of pills I have to take. It seems like every time I turn around, a doc says I need more pills. I have lupus meds, depression meds, stomach meds, allergy meds, sleep meds, pain meds, vitamins for vitamin deficiencies... vitamins and minerals to help other vitamins absorb better. and on and on. Sometimes I wind up just taking "the bare minimum" and sort of skate by when I feel like I can't swallow just one more darn pill. The funny part is that it isn't as hard to swallow them as when I was first dx and had such dry mouth problems. This is more of a mental thing I guess likely more of a down feeling about being so darn sick.

Amy

 

[chel]

pill count

Hi Amy,

It sounds like you're a fellow teacher in the Midwest. Me too. Nice to meet you. I've had SLE since.. mmm... 1991? Your post reminded me of one morning I was laying out the pills to take. I had set all the bottles on the counter and picked out the required number to take (just for the morning dose). In the low lamp light and their images reflected in the mirror behind, I just sagged to the floor feeling disgusted about the numbers. Then... I went to get my camera and took a photo... then, I poured the disgust out into a poem and when I was finished, determined to do everything I could to start eliminating some of them.

If I couldn't eliminate them, okay. But if there was anything I could change (diet, exercise, sleep pattern, over-working) I was determined to do it.

I'd like to say I'm 100% in control of my health today but that's not accurate. I'd like to say I'm in great physical health but that went by the way side from the depression, the exaustion, the loss of balance, yadda yadda. But, I don't face the pills in the same way now. I manage my pills, I don't feel like they're managing me.

Remember, every day YOU decide what to do for your body. YOU decide if you want the pills to ease the pain, to regulate the systems, etc. You are in control of that. Make wise decisions. Those around you gain strength and courage by watching your personal health struggle. And you can endure. And you can again find hope, laughter, and peace.

~chel

 

[Douglas]

Howdy Amy,
I only have nine pills in the morning and five more during the day but I know what you mean.
"Sometimes it so discouraging to take so darn many pills"; but it is a lot better than not taking them.
Douglas+

 

[macfamily53]

HI Amy

I am sorry that you feel that way about your pills(((hugs))).I do know what you mean though.Today i was thinking about the fatigue and pain i been in also.I go to the rhueme tomorrow to find out what the heck is going on with me and find out what is going on with me and am afraid she is going to want to give me more meds also.I just want to let you know i understand what you are going through.I do have to agree with you douglas as it is much better then the horrible pain.Hope you feel better real soon((((hugs))))

Tammy

 

[onetay]

Amy,
You are not alone with this feeling for many of us pills are the diet we are on. I wonder some days if there is room for food in my stomache lol. It seems that there is a medicine for everything these days not sure to say thank god or to cry. I am sure that everything we are given is to help us manage the disease and problems that come with it better but at some point can't they combine some of them for a one pill fix all, well it was just a thought not a good one lol. I am sorry you seem down today and wish I could cheer you up but am having a hard time as know what you are feeling. Well sending you good thoughts and best wishes to finding a way to handle all the pills in your life.

 

[momof2boys]

Hi Amy! I find I have a love... hate relationship with all my pills.

I love them because they do actually make me feel better :spin:

But I hate to take them all! In fact I'm dealing with the side effects of one of my plaquenil pills getting stuck tonight, you know the bitter, nasty taste that will not go away!

But I deal with it so I can continue on my fight!

Delana

 

[nicky00]

Yes Amy
I do know what you mean.

I sometimes think when I look at 'my plastic storage box of medications'.

" What happened", How did my life get like this etc.

It dosnt last long the feeling, and I think about all those people who's lives are similar if not more serious than mine and that stops me in my tracks.

If we look around us we are not alone

Nicky

 

[lin]

Hiya Amy, i know just where your comming from ovey, it just gets you so down at times, i wont go into how many i take morning and night, but like you i fel ive just about come to the end of my tether, And its not me at all

Think when we are feeling rough and flaring like i am and proberly you are, it makes things ten times worse, here is me helping you ,i cant help my self, its a dam good job we all have each other thats all i can say.

and sometimes just the thoughts of popping them all with water makes you feel yuk doesnt it?

(((((((((((((((((((((((((HUGS))))))))))))))))))))))) Lin xxxxxxxx

 

[peonyprincess]

Amy,

I can totally understand your disguist in taking so many pills. I imagine alot of us are in the same boat. I've often wondered what kind of a cool mural that I could create with all the pills I take in a month. ai feel very fortunate in that I have help financially with my medication expense otherwise i couldn't take a fourth of what I take. I have one med that I take three times a day and the cost that the insurance company picks up is $708.00, yes thats a month. I have others that are in that $200-300 range. I really feel for those people that fall thru the cracks and don't have the medical coverage that is necessary to cover the medicines, the doctors visits, lab tests, etc. When I was working as a nurse, I often wondered why we would see the same people over and over in the hospital. Little did I know how much of a financial hardship alot of these meds people are on. For the elderly, there are several different programs to assist them on buying their meds, but there really isn't anything in place for the young and middle aged with kids. That alone can be a financial hardship then add in a beta blocker and alot of people unfortunately have to make a difficult choice, meds or school supplies, food, glasses for their kids, braces, etc. I wish there was more help available to help more people.

As for the amount of pills that we have to take, I wish someone would find a cure for Lupus so that none of us had to make a meal out of our meds that are necessary for our survival. Maybe someday.


Nancy

 

[Jesse88]

We all understand how you feel. I'm worried about telling my rheumy about what's going on because I'm afraid I'll have to go back on the MTX injections or take more pills. Since I'm having stomach issues, it's a real concern. Guess I need pills for that too.

When I get down about all the pills I try to remember how it was before I had them. Not good. Not good at all. When I think of how people used to suffer before these meds became available, I thank God we have these pills we love to hate. I sure do wish I could go back to the way I used to be, but since I can't, I'm so grateful there's medication that can help me.

If it helps, keep venting here to us. We know exactly what you're feeling and can relate to your frustration and sadness. We're all in this together.

 

[cad]

Hi Amy,
I totally understand yours and everypone elses prediacment. It definately is a catch 22. Yes we need to take them beacuse if we didn't we probably couldn't function and would have no quality of life but then there are side effects to the drugs and they are a constant daily reminder of illness.

Just wanted to say that it is normal to get lie this when taking loads of meds as lots of others have said. We just have to try and also remeber that we do take them for a very good reason and if we didn't really need them then we wouldn't be taking them.

Hope you feel better soon.

Take Care

Cassie

 

[teachmom67]

When I'm feeling pretty functional, I don't mind the pills and am able to be so thankful that I have them. I know full well that without them, I likely wouldn't be alive right now. I definately wouldn't be able to sit here and type. The pills get hard and discouraging when I feel like I'm losing a my grasp on being a functional mom/teacher/person. I guess it's at those times I must somehow want them to be the cure all solution and they are letting me down.

I had a stress echo today and my heart is o.k, but I came so incredibly close to passing out... I even got the dark fog coming over... I am tired of not knowing if I just have to live like this or if there is anything that can be done.

A

 

[stef]

Hi I recently bought a plastic pill sorter cos I was getting very confused with so many pills! It makes me smile to see I'm not the only one who finds herself counting out pills on a weekly basis and trying to swallow as many as possible in one go - the after taste is yuck!! I know I can't survive without all my pills but at times the sight of them gets me really down! A month ago my blood pressure shot through the roof and had to rush to the ER - an ignorant and rude nurse asked about my medication and made a rude coment about the amount of pills I took - something about me being too young to be taking so many pills, and what was I going to leave for old age!!! It amazes me how ignorant some people can be! Anyway it geat to be able to share experiences with dellow sufferers.
thanx for being there
stef

 

[tbunny1]

:sadwalk: What strikes me as so sad about all the meds I take is that they are mostly for treating symptoms, not disease.

Pills for inflammation, a handfull of different ones for pain, another for BP, yet another for edema. One for clotting, five for psych and neuro manifestations, vitamins and supplements to counter act the effects of the others. A pill for the stomach, because I take so many darn pills. Argh!

I get the same frustating statements from ignorant people - how can you possibly need to take so many pills? Even the doctors go there! Then we discuss it, I tell them I would love nothing better than to be able to drop some of them. After medical review, nothing changes - if anything they add something more.

Where is the pill to prevent instead of manage symptoms? Here's hoping some brilliant researcher comes up with something soon for us all.

 

[sushi]

i echo your words tbunny1 i echo your words.

 

[LupusLyn]

I too agree what a pain it is to take so many pills! I wouldn't want to be in the shape I was before the pills either. I have cronic pancreatitis added to my list of dx. and I wouldn't want to be without pain meds when I need them. I think its a "pain" to try to remember to get the prescriptions refilled when they run out.

I often think of the nice necklace all these pills would make if I put a string through them and let my granddaughter play with it. :lol:

Take care swallowing all those pills!

Lyn

 

[cjmclaughlin]

This is a major vent of mine also...I hate that at 32 years old I take more pills them my 80 year old grandparents combined. I know that they seem to be helping but it frustrates me so much that I am taking them but not seeing the lupus symptoms going away completely.