You ever just have enough? vent

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kpeachy75
Regular Member


Date Joined Sep 2005
Total Posts : 250
   Posted 1/19/2009 10:16 AM (GMT -7)   
It's been a while since I've been on the boards. But I really need to vent.

Do you just ever get tired of having lupus? I am tired of having huge bruises all over me that just show up the day afer being lightly tapped by something. I hate looking like a freak with all these stretch marks from all the stupid meds that made me balloon into a weeble wooble. I hate the fact that, after five years, my husband still doesn't get the fact that I can't hold a normal 9 to 5 job because some days I'm just too tired to work. I hate that no insurance company in the US will cover me for less than the mortgage of my 3 bedroom, 2 bath house each month. Does the government just want us all to croak, because that's the message they are sending. I hate that my husband is afraid to touch me because he thinks he is going to cause me pain. I didn't ask for this burden and I hate that others around me don't have to deal with this. I hate going to the pharmacy and leaving with more bottles than people three times my age. I hate that I take more coumedin than my parents and inlaws (6mg / day). I am mad and I have (stupidly, I know) boycotted my meds for the past three days. Maybe it's just me being rebellious.

Sorry, I guess I am losing my patience with this disease. Bad week.
Take care, peachy
 
Diagnosed with lupus in May 2005. Daily Medications: Prednisone, 5 mg; Imuran, 50mg 2x a day; Warfarin, 5 mg / day; Zoloft, 100 mg / day; Plaquanil, 200 mg 2x a day; Nexium, 20 mg / day; Tramadol, 50 mg 2x a day (as needed) and Tylenol. Supplements: 1500mg calcium; 2000 IU of Vitamin D; 400mg magnesium; Centrum Silver (and I am 30!)


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/19/2009 11:20 AM (GMT -7)   
(((( peachy)))) I am there with you, I hate this disease and all it brings with it too but I don't think stopping your meds is the answer and it may be adding to your frustrations. I don't like taking all my meds either but I know if I don't I cannot function, not that I won't but I can't. Do you feel your illness is under control, if not it may be time to see the doctor. You should also share with him/her how you are feeling, sometimes doctor's can surprise us with their support and understanding.

Is there a local lupus support group you can attend? It may be just what you need, especially if you're not getting a lot at home. This disease is too hard to deal with on our own, this board is a great support but sometimes we may need more. I am sorry I have no words of wisdom, all I can say is live each day one day at a time, do what you can when you can and always try to think of something positive because things could always be worse. Hang in there and please stay in touch with us and know we are here for you.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


kpeachy75
Regular Member


Date Joined Sep 2005
Total Posts : 250
   Posted 1/20/2009 9:59 AM (GMT -7)   
I've gone three days without meds. My joints are a little stiff but that's it. I know long term its not a solution and I'm going to start them again today. Maybe its just my way of rebelling. This disease can be very emotionally draining sometimes. I guess everyone has a breaking point. the in-person support groups here are not very inspiring. These online groups have really been a godsend for me. My husband and I chatted last night and he said that he thinks that he worries more about my health than I do. I just don't want it to control me. I try to think of it like a child that I have to take care of and that will always be a part of my life. Does that make any sense?
Take care, peachy
 
Diagnosed with lupus in May 2005. Daily Medications: Prednisone, 5 mg; Imuran, 50mg 2x a day; Warfarin, 5 mg / day; Zoloft, 100 mg / day; Plaquanil, 200 mg 2x a day; Nexium, 20 mg / day; Tramadol, 50 mg 2x a day (as needed) and Tylenol. Supplements: 1500mg calcium; 2000 IU of Vitamin D; 400mg magnesium; Centrum Silver (and I am 30!)


kpeachy75
Regular Member


Date Joined Sep 2005
Total Posts : 250
   Posted 1/23/2009 6:28 AM (GMT -7)   
Ok. This post is probably more like a blog of what happens when you skip your meds. Two nights ago I was out with friends and I got spacy dizzy. I ended up getting to a hotel and slept. I finally told my husband about how I had not taken my meds and he was pretty upset. The next day I took my morning meds (pred, imuran, and plaq) but not the zoloft. During the morning I found myself forgetting little things that I normally wouldn't. So at lunch I took the Z. At night I took my amildopine, imuran, plaq and coumedin. I've been okay without pain meds so far.

I feel a ton better already.

Moral of the story is as much as we hate these meds we really do need them. Meds are our friend.

Thanks for watching! lol.
Take care, peachy
 
Diagnosed with lupus in May 2005. Daily Medications: Prednisone, 5 mg; Imuran, 50mg 2x a day; Warfarin, 5 mg / day; Zoloft, 100 mg / day; Plaquanil, 200 mg 2x a day; Nexium, 20 mg / day; Tramadol, 50 mg 2x a day (as needed) and Tylenol. Supplements: 1500mg calcium; 2000 IU of Vitamin D; 400mg magnesium; Centrum Silver (and I am 30!)


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/23/2009 8:52 AM (GMT -7)   
(((( Peachy )))) you are right this disease is draining and I think we all rebel at some point, hang in there it sounds like you have w wonderful husband. He worries about you and wants you to take good care of yourself, your disease doesn't have to control you but you have to take care of it, just like you said, it's like taking care of a child. We have to listen to our body and rest when needed, eat right, stay hydrated, light exercise when we can, etc. I am glad you are back on your meds and feeling better. Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/25/2009 11:12 AM (GMT -7)   
Thank goodness I'm not the only one! I got those freaky stretch marks too! And my man said I look "yellowish." I bruise fast too. I'm tired of the medication. I'm tired of side effects. I look at my pill box, I'm like uggggg I dont want to do this. My man has to push me to take it now. Im so sick and tired of meds. I'm tird of being sick. I actually even told my parents to kill me (apparently I was half asleep and hanging over the john and called them on my cell). I'm also tired of falling, especially down the stairs. But thats because of my eye patch..I cant see out my eye yet well. Well I have sigt I should say, just not single vision out of the eye haha. So I wear a patch to get at least one vision same.
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: Imuran, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 1/27/2009 6:01 PM (GMT -7)   
Hi. I'm new to this site. I am 52yrs. old and I have lupus, sjogrens's disease and fibromyalgia. Last May I had my fourth spinal surgery due to degenerative disc disease. I was diagnosed with Lupus and Sjogren's at Mayo clinic 4 yrs. ago after 30yrs of doctor hopping to get someone to listen to me and get some sort of diag. These last two weeks I have felt horrible. I went to a new rheumatologist 3wks. ago to see if my current treatment was the right one. She insisted on doing all of the blood work all over and said that on that particular day my worst problem was fibromyalgia and bursitis in both hips and shoulders. I talked to her about pain control meds......I very rarely take pain meds because they are so hard to come by and I try to save them for the horrific days. She totally dismissed my question and said to come back in a month for the results. I am frustrated beyond belief. Does anyone have any suggestions?

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/27/2009 6:36 PM (GMT -7)   
I doubt that too many doctors prescribe pain meds the first time you see them. If you can't wait a month, can your former doc call in a refill? I'm sure you took your chart and the records from mayo to her, but if not, that's the first thing I'd do. I'd bring it up the next time you see her. If a doc dismisses my questions after I press them, I look for another doctor.

Good luck.
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

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