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theLword
04-20-2012, 07:05 PM
I'm 25 years old, it's Friday night & I'm laying in bed.

I increased my dosage of Amlodipine last week. My doctor warned me that the number one side effect is swollen ankles. I took the lowest dose of 5mg for the past month and had minimal bloating, but no swelling. This past week has been very stressful. I noticed everyday this week that by the end of the day my feet looked a little swollen, but nothing too serious or even noticeable by anyone but myself. Until today. My feet were fine until lunch. It was a beautiful day out today and for 15 minutes at the end of lunch my coworkers and I sat on a bench outside. As soon as I headed back into my office I felt a sharp pain where I recently had a Pernio lesion. I was wearing knee high stockings (since I have Raynaud's this has become a habit) so I went to the bathroom to take them off and figure out why my feet were hurting so badly. As soon as I walked out of the bathroom without my stockings on I realized that my feet were beet red and about twice their normal size. I work in a hospital. Within 30 minutes every single person who works on my unit asked me if I was okay because my feet look, "red and weird." Eventually the head doctor told me that I don't look well and that I should leave early for the day. So I called my boss (I'm a social worker) and headed home to change my shoes. Turns out my feet were so swollen that my shoes were actually cutting off my circulation.

Tomorrow I have a wedding shower for my college roommate that's two hours away. I'm just driving up for the shower and then driving back. I'm going to see friends who I haven't seen in almost 3 years. I recently decided to forewarn a couple of my closest friends of my new diagnosis of Lupus in hopes that it would mean not having to talk about it at the shower.

So instead of staying home and putting my feet up I made a poor decision and I went out to buy a maxi dress to wear to the shower and cover my double-sized legs. I'm paying for it now. My feet are starting to look a lot better, I put them up on pillows for a couple of hours. But I am not feeling better. I have a slight temperature (which has a huge effect on me) and to be honest, I just don't feel right.

I know that I'm rambling and it's fine if you stopped reading a couple paragraphs ago, but I'm going to continue my rant! :) My boyfriend stopped home and asked me to join he and his friend for a drink. I explained to him that I wasn't laying with my feet up in the dark watching a movie for no reason and that I had a fever and wouldn't be joining him since I have to be up early for the shower tomorrow. His response was that there is a fever "thing" going around right now and I better not give it to him. I stated that fortunately he cannot get what I have and he laughed and said that I'm ridiculous.

I get that this is new, not just for me but for him too. I've tried so hard to be patient and to give him the time he needs to accept that I am sick but he's not coming along as quickly as I need him to. He's my best friend and the love of my life, but if he can't get this.. then I don't know what will happen.

I watched Simply Love tonight (as recommended by another post -- that I would link to if I had the energy to do so after this insane rant). The worst thought crossed my mind and I feel so horrible for thinking it.. I have never had a distinct butterfly rash and after watching the movie I thought to myself.. I want that. I want something that you can see. I want people to look at me and know that I am sick. I invest so much into myself to look good and I feel like it is working against me instead of for me.

Thanks for listening/reading. I will dedicate this rant to all of you who are also laying in bed on this beautiful Friday night. Know that you're not alone and that although I don't know you.. I understand you.

steve.b
04-20-2012, 07:41 PM
something that has helped me is
http://forum.wehavelupus.com/showthread.php?11692-The-Open-Letter-To-Those-Without-CFS-Fibro

the link for its origional site is
http://notdoneliving.net/openletter/cfsfibro

steve.b
04-20-2012, 07:47 PM
a couple of other things i have learnt.... the hard way.

stress is a major trigger for me.
even a little stress will make me feel unwell.
major stress and my body goes haywire.

sun is not good for us.
when you are feeling good.... a little sun may be ok
when you are not feeling 100%... no sun is good.
when it is hot.... no sun is good
even flouro lights can effect many of us.

rest is the only cure when inflamed.
inflamation will not go away if you continue to do activities.
inflamation medication does help.... but rest is essential.

ritzbit2
04-21-2012, 06:30 PM
My feet swell all the time too :/ it can really makes things hard to do when it hurts to get up and walk. Keep your feet up as much as you can and if they continue swelling I would look into getting TED hoes, they really helped with the swelling in my feet last year. I'm sure your boyfriend will come around. Give him time to figure out what all you being sick means.

Shine
04-22-2012, 09:07 PM
I have never had a distinct butterfly rash and after watching the movie I thought to myself.. I want that. I want something that you can see. I want people to look at me and know that I am sick.

I can completely relate to this. I think my partner thinks I'm insane because if I have the slightest flush in my cheeks I'll bug her..."Look at this...what do you think? Do you think it could be? I mean...it looks like the pictures. Maybe it is..."
I want evidence. My bloodwork has never been clear-cut either which is even more frustrating. I feel like a fraud when I bump into people who have heard I've been unwell...but there I am, ta dah! All showered and shiny and on my feet in the supermarket.

It's understandable to want a physical sign. To say "Look...I am ill." Invisible illness is frustrating for us and for our partners. My partner says "You need to keep talking to me because I have no idea whats going on...unless you're in a major flare you don't look ill." So keep talking. Ask your partner if he's noticed any differences in you...about how often you go out, how tired you seem, how much you sleep, how much you talk. He'll learn to recognise the subtle signs that you're really feeling utterly crap. Show him things online...drill the point home. He has to understand to be a support for you.

The link Steve has put up is really very useful xx

theLword
04-23-2012, 07:32 AM
Thank you all so much. Joining this forum has really kept me going in the past month. I greatly appreciate all of the encouragement and support.

Seeing my college friends went well. I recently bought a new car with a sun roof so I was proud of myself that I wore a hat during my long drive up to New York this weekend. The only rough part was that I was shaking pretty bad for most of the day, I'm not sure what from? Maybe a side effect from medication?? And also when I was driving, and I've noticed this before, after a while my right leg starts to cramp up. By the time I got home I was in a lot of pain.

But today is another day :)

Shine
04-25-2012, 07:21 PM
My legs cramp when I'm driving and sometimes it leaves me with jelly legs when I get out! Driving looks easy...but it isn't always. I have problems with my arms and shoulders when driving too. Good on you for wearing your hat :)

Are things ok with your partner? Did you show him the link?

theLword
04-26-2012, 10:27 AM
Things with my partner have been a little better. I'm hoping that he's slowly but shortly coming around. However one of his, friends who I have only met once, was over the other night. His friend has been having issues with his eyes and since I'm on plaquenil I was more interested that I usually would be. Out of no where my boyfriend explained my interest by bluntly say.. oh yeah, she has lupus. So matter of fact. His friend of course reacted as I would expect someone to when someone tells them they have a chronic illness. I'm hoping by partner took something away from it, but I guess only time will tell.

Shine
04-26-2012, 09:49 PM
Your partner sounds like my brother...blunt as! Because he's not experiencing it he won't be quite as eloquent when it comes to describing it as we would...but I think that he told his friend shows he's open to talking about it, he's not pretending it doesn't exist which is a good thing.

My partner reckoned I used this forum too much. This was after she'd told me she doesn't understand and no matter how much I explain how I feel to her she just doesn't get it. So I pointed it out - people here understand how I feel.

Don't you just wish they could live with it, just for one day?

karene8
04-29-2012, 06:23 PM
Hi M,
I just read your post and I didn't get bored half way through, I kept on reading because I came to this site to find other people who feel like me. You were the first thread that I looked at and you have amazed me at how much like me you are. I am in a relationship also and feel how you do, that I am very misunderstood about my disease. I have been searching for the butterfly rash like you, and have hoped that it would appear so I can see some sign of the dreaded disease. Well guess what? It showed it's little pink wings across my face only two days ago. I couldn't believe it. I thought I would never see it and there is was. Even my daughter said I had it and wow, was my face hot. The heat that comes off this butterfly rash could fry an egg. lol. i have recently had a flu shot to protect me throught the winter and I think that caused a flare. I just wanted to let you know how much you remind me of me and please don't feel like nobody understands, because like you, I do. Talk soon, take care, Karen. xx

tgal
04-29-2012, 08:24 PM
Hi M,
I just read your post and I didn't get bored half way through, I kept on reading because I came to this site to find other people who feel like me. You were the first thread that I looked at and you have amazed me at how much like me you are. I am in a relationship also and feel how you do, that I am very misunderstood about my disease. I have been searching for the butterfly rash like you, and have hoped that it would appear so I can see some sign of the dreaded disease. Well guess what? It showed it's little pink wings across my face only two days ago. I couldn't believe it. I thought I would never see it and there is was. Even my daughter said I had it and wow, was my face hot. The heat that comes off this butterfly rash could fry an egg. lol. i have recently had a flu shot to protect me throught the winter and I think that caused a flare. I just wanted to let you know how much you remind me of me and please don't feel like nobody understands, because like you, I do. Talk soon, take care, Karen. xx

You bring up a great point that I want to speak to. As Lupus patients we should always get the flu shot but we need to make sure we don't get the one made with the live virus. There is one made with it and one without so always make sure to get the one without or it could cause issues

deannegirl
04-30-2012, 11:31 PM
M, I'm right there with you.

My boyfriend is very loving and tries his best to be supportive; I have to give him credit for attempting to understand a very confusing disease that I am often overwhelmed and confused by myself! However, when he wants to do a lot of fun activities on a Saturday and I feel like crap I tend to suggest, “why don’t we do ONE fun activity and then relax around the house the rest of the day?”. He’ll constantly try to negotiate with me, tell me to take an ibuprofen and I’ll “be fine”, etc. He just absolutely doesn’t understand the severity of the symptoms I’m experiencing despite his best efforts – mostly because I rarely “look sick” to the outside world! It is very frustrating. The other thing is just like you said above -- you tell them you have a fever and they immediately think, oh you have a "bug!" when we know that its the Lupus. I get joint pain and muscle cramps every few days or so REAL bad, and he'll ask me EVERY TIME without fail, "what did you do to bring THAT on?" As if we're climbing mount everest in our sleep or licking bathroom door handles to get sick.

After the 100th time explaining myself I just feel like not talking about it with anyone else except for fellow sufferers anymore....I’m excited to start posting on this blog! After spending most of my life with unexplainable symptoms that no one else understands, can relate to, or wants to hear about – I’m looking forward to a little “bitch-fest” once in a while with Lupus ‘friends’ who can truly relate and understand! We all need a little empathy once in a while. Hang in there. I understand you too.

~ Deannegirl

30/f California. Diagnosed November, 2011
Plaquenil, Xanex, Ibuprofen, Omega 3 complex, Iron, Vitamin D, Calcium, Cranberry

deannegirl
04-30-2012, 11:36 PM
And also when I was driving, and I've noticed this before, after a while my right leg starts to cramp up. By the time I got home I was in a lot of pain.

OMG I am SO glad you brought this up, this is one of those symptoms I've had forever and thought I was just crazy!

I get joint pain and muscle cramps often but they are almost always more severe or isolated to my right side. In fact, sometimes when I drive my right foot and/or knee starts to have stabbing pains and I either have to put the car on cruise control, or drive with my Left foot to survive on long car rides! If I don't, the pain can be excruciating! Today the joint pain in my wrist and hand was so bad, I ended up controlling the mouse on my laptop with my left hand, and typed most of my emails with just one hand today. It's truly crazy how the pain just settles on one side of the body like that. I've searched medical sites and none seem to mention this phenomenon but if you look at this and other Lupus/SLE message boards I've seen comments like these relatively often.

I wonder if/when they'll figure out why??

~Deannegirl

theLword
05-01-2012, 06:23 AM
You bring up a great point that I want to speak to. As Lupus patients we should always get the flu shot but we need to make sure we don't get the one made with the live virus. There is one made with it and one without so always make sure to get the one without or it could cause issues

Thanks for this Mari, I wasn't aware! I will have to look into this since my job requires I get a flu shot. When I got the shot this past fall I ended up getting sick from it, so I will have to make sure it's not the live virus next time.

theLword
05-01-2012, 06:30 AM
OMG I am SO glad you brought this up, this is one of those symptoms I've had forever and thought I was just crazy!

I get joint pain and muscle cramps often but they are almost always more severe or isolated to my right side. In fact, sometimes when I drive my right foot and/or knee starts to have stabbing pains and I either have to put the car on cruise control, or drive with my Left foot to survive on long car rides! If I don't, the pain can be excruciating! Today the joint pain in my wrist and hand was so bad, I ended up controlling the mouse on my laptop with my left hand, and typed most of my emails with just one hand today. It's truly crazy how the pain just settles on one side of the body like that. I've searched medical sites and none seem to mention this phenomenon but if you look at this and other Lupus/SLE message boards I've seen comments like these relatively often.

I wonder if/when they'll figure out why??

~Deannegirl

Hi Deannegirl, I give you the warmest welcome that's possible when you join a site for a chronic illness :)

My boyfriends lack of understanding also usually makes me doubt myself as well. I'm constantly thinking to myself.. well maybe I'm not that sick or maybe the doctor was wrong. I had a realization last night while getting ready for bed. It was that unfortunately I am sick and the doctor was right! It's not normal to constantly not feel well and be exhausted, to have mouth sores, to have purple feet, to have sores of your feet, to have a low grade fever every night, etc etc etc. I went for a "jog" with a boyfriend this past Saturday. I put jog in quotes because even I have never jogged so slowly, but my boyfriend set the pace and deep down he must know I can't do it. But we did this 3 days ago.. and my legs have never hurt so badly, still. Every day it's something new.

I read your post and I am so sorry that it took so long for you to finally get diagnosed. I can't even explain to you how angry it makes me. After reading post after post of people saying that it's taken 15+ years to finally be diagnosed it's almost enough to make me go to med school. Your daughter is very lucky to have you so proactive in her life. Since you are her biggest advocate I am sure she be able to find health.

Look forward to more of your posts!

Oh and happy Lupus Awareness Month!