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View Full Version : I think I am just gonna fall apart :(



TracyDawn
04-27-2005, 08:31 AM
BEFORE they get me diagnosed completely. On top of my other myriad symptoms I now have this awful pain in my right side (both front and back). Rash on my face. Bruises on my legs and I KNOW I haven't run into anything. So I go to the dr this morning. Pee'd in the cup and she did a pelvic (what FUN those are - NOT!!) She has no clue. So I have to go have a pelvic ultrasound tomorrow. She also told me to call the Rheum. and "harrass the daylights out of them" so they'll move my July appt up. (If her office hadn't screwed up in the first place I'd have already seen them by now) So I called and they don't have any sooner appts. I'm on the cancellation list but if it takes this long to GET an appt. who in the right mind would cancel???
I HATE THIS!!! I feel like I am slowly falling apart and they'll find out what the heck is wrong when they do my autopsy. :cry: :cry: I've been living with this for 7 years now and slowly going downhill the whole time and I STILL have no answers. All I keep getting is "we don't know" and prescriptions for pain meds. And while I do appreciate those, it isn't what I need. I need answers. I need to know I'm not a nutcase. I need HELP!!! I try to stay positive and take things one day at a time but it just ain't happening today. I just want to sit down and cry all day. Think that might help? I doubt it but it's how I feel. Sorry for the poor me post but I have no one else to talk to that understands.

derlinda
04-27-2005, 10:44 AM
so glad that you posted. i just spent the last hour walking around the house crying. feeling lonly, sick and lost. just wanted you to know that ou are not alone out there. i know one day i will feel better, as will you. but in the mean time i'm just going to push through, cry and show up for life the best i can. i know things could be worse but this sure feels bad.

sending you good thoughts. we will pull through!

melinda

TracyDawn
04-27-2005, 11:45 AM
Thanks Melinda. I'm sorry you are having a rough day as well. I think crying is medicinal in it's own way, cleansing I guess. Not to mention moistening dried out eyes LOL
I really hope your day/week gets better. {{{HUG}}}
Tracy

derlinda
04-27-2005, 01:39 PM
hey tracy we both made it to "tadpole", i guess thats somthing :lol: !

my body feels worse but my heart feels a little bit better, think its all that crying...

take care,
melinda

TracyDawn
04-28-2005, 05:27 AM
So sorry your body is feeling worse. Hopefully today will be a better day for you. I'm feeling a little better emotionally too today which is good cause yesterday I just wanted to crawl in a hole. :(
Too funny on the tadpole. Wonder what the big fish are called? ROFL
{{{HUG}}} Try to rest and relax today ok?

pharmacygirl34
04-29-2005, 12:02 AM
Hi there :D
Well your not alone. All of us have gone through this process of being passed from one doctor to the next with no difinitive answers. It is frustrating. I live in an area where rheumys are gold. I had to wait for a month and a half to even get in and see one. So I made appointments with 2 rheumys and was on the cancellation list too. I totally understand where you are coming from. Something someone suggested on another site was making a list of all of things you want to talk about. This was the best idea ever. I saw my rheumy and forgot half of the stuff I wanted to cover because I had no list. So this next go around guess what, I am making my visit and money count by bringing that list.

When all of these symptoms began appearing about 5 years ago I too thought I was a freak and chalked it up as so. Now I know that I am not a freak just my body is. LOL. No seriously I can now understand why these things are happening and what is causing it. I wish the doctors could come up with an answer as to why it happens, but for now I am glad they can come up with what I have. That was half the battle there.

The next battle is finding something that will eleviate the pain and make us more mobile and feel human again. This is tricky since everyones body with lupus has similar symptoms but reacts differently than each others. What works for me may not work for you. The nice thing is that we can try it though. Each time we try it we might find it works even if only for a little while. And relief no matter how long it lasts is a blessing.

I wish you the best and hope you can get in to see your rheumy soon and get some answers. This will help your mental health as much as anything.

But remember we are all here and when everyone else on the outside world has no clue as to the pain and hardships you go through daily, we do. We are living it right along with you. So let it out friend. It is okay.
We understand and you are not alone.

If you want to talk sometime feel free to contact me. I use msn messenger and my e-mail is on my profile.

Good luck and keep intouch as we are anxious to here what is happening and how your doing.

Always,
Angela

dency
04-29-2005, 09:11 AM
Since we are all tadpoles here maybe we will turn into frogs...and then princesses/princes. Thanks for the laughs ya'll (from Texas) I needed one. My hands are going numb while I'm typing this...one of my biggest lupus complaints lately.

I have had abdominal pain they can't track. I had the full round of ultra sounds and they found cyst on my ovaries but that didn't account for where the pain I'm having is coming from. It's on both sides and hurts in the front and the back. Luckily it comes and goes. It gets worse when I do too much.

You are the CEO of taking care of yourself! So look at all the Dr visits etc as part of your high powered job. I know, it's a hugh pain. We all hate it.

A good cry always makes me feel better too. A nurse clued me in to crying in the shower. If you have kids that is a great place to let go. No one can hear you and your eyes don't look so bad when you get out. My mom died of lupus at age 60, four years ago. I was having a really bad day with pain and when I picked up my 13 year old from school I was crying. When she asked me why I was crying I told her I now knew better what my mother had gone through and I had a whole new appreciation for how strong a woman she had been.

Thanks again for the chuckle. You have support here!

Dency

TracyDawn
04-29-2005, 10:54 AM
Thanks ya'll (Dency I'm originally from South Georgia LOL) you guys are great.
I'm doing a bit better today. Had the ultrasound yesterday and that was a nightmare. The same nurse that screwed up my Rheumy appt didn't fax the paperwork over. REally tired of her messing with me like that. Luckily they felt sorry for me at Radiology and went ahead with the u/s. Not that it did any good. She never went near my right side where the pain is. She was more interested in what wasn't there.
I had to have a hysterectomy in 2001 for a tumor, cysts, endo, pain and bad af's. Had been dealing with all that since I started af at age 12. So 14 years of that. Luckily I was able to have child in the middle of all that. anyway the tech kept asking me why I had to have they hyst and didn't I know that it doesn't cure endo?? HELLOO!!!!! I HATE when they do that. Of course, I DIDN'T know the endo wouldn't go away. The only thing I was told was there was a chance the PAIN wouldn't completely go away. Didn't find out til after that the endo could come back (and has!!!). I just thought it was very rude of her because that is a personal thing, and was such a HARD decision for me. I still have issues with it, especially when my son keeps saying he wants a brother or sister. :( I'd LOVE to be able to give him one. But it ain't in the cards. Not right now anyway. It's all I can do to take care of what I have right now, much less add in more to have to depend on me ya know? Anyway, I was a mess when I left there.
Pain is still there but I'm dealing with it. As usual. LOL So having a better day emotionally today anyway.
Thanks for letting me know I'm not alone. {{{HUG}}} I hope you all have a great PAIN FREE weekend.

derlinda
04-29-2005, 02:46 PM
i thought i was the only one who cryed in the shower. it's a great place because i can really let go and my house mate won't hear me.
glad to hear most of us are doing a little better today.
i have to have a hard conversation with a guy i really like. i have just starting to date since i was told i have lupus 2 years ago. i have gone out with this guy 3 times and really like him. he keeps pushing to go for big hikes, climbing, and bike riding. i keep finding ways out of it but its time to let him know that i have lupus limitations. i really don't want him to run away, but thats part of this illness. have any of you had to have this talk with a guy and had it turn out better then you thought?
it's been making me weepy all day today...... blaa!! :oops:
be well,
melinda

spacey
04-29-2005, 10:54 PM
:P I was feeling very sorry for myself. I hadn't had a major flare in about 4 years and now I am totally down for the count. Just took two weeks off of work and taking tons of pills, and had an allergic reaction and now am off all pills and feeling pretty miserable. So as bad as it sounds its nice to read about others in the same spot. No one around here understands Lupus and I feel they are all saying, hey you were fine two weeks ago, whats up? 8) So sorry you aren't feeling well and wishing you health, humor and remision.. thats whats keeping me going knowing it went away before and hopefully will again. keep :lol:

derlinda
04-30-2005, 05:50 AM
sorry your in a flare, but i think your right to hold on to the hope that it went away befor and it will go away again.
i to am in the biggest flare i have ever had since i was told i have lupus.
its been so long and i feel so bad that its hard to hold onto the hope of feeling o.k again. but this will pass for both of us!
please let me know how you are, sending everyone good thoughts!

melinda

spacey
04-30-2005, 09:27 AM
:( I'm sorry you too are in a flare. Holding on to good thoughts is really hard some time, but sometimes its all we have. I am going to a naturapath on Monday. I just can't choke down these pills any longer. If Lupus doesn't get me, the reaction to all the pills will. I hope you start to feel better. I'll let you know how my visit goes on Monday. Stay positive, take care :P

derlinda
04-30-2005, 09:50 AM
wow, good for you! i'm saving my $ to see a naturapath here in boulder.
i have this secret fantacy that if i totaly change my diet i will be restored to health. i hear alot of people talk about no meat, dairy, sugar, coffie or glutin. it seems to really help some folks. what are you hoping the doctor will help you with?

love,
melinda

spacey
04-30-2005, 09:59 AM
I became a vegatarian 6 years ago, and have not had a big flare in over 5 years. I'm giving up sugar and caffeine also. I'm hoping they can help the swelling , pain in my joints, and help me sleep. I've had these panic attacks lately driving to the beach. I read that it is lupus related, so I'm hoping to get help with that too. I guess I'm hoping for quite alot. But I've read alot lately about ph levels and seretonin and dopemine levels and instead of pain relief and masking the flare, some treatment for why and what s happening would be a positive addition. My insurance pays for most of it, so I'm hopeful. After so many years without a bad flare, this is really hard to take right now.

TracyDawn
05-02-2005, 05:31 AM
Good morning ya'll. I hope you had a good, pain free weekend.
I just read that you both are in really bad flares and for that I am sorry. For me the only thing that seems to help with that the most, is staying out of the sun completely except walking to my car. My dh had dark tint put on my new car (got it in January for my bday :) ) so that when I am in it I am blocked out, and the same is on his truck for when I ride with him. The only problem is I LOVE riding with the windows down :lol: But I seem to be feeling better since I've stayed inside most of the weekend.
I hope you both are feeling better. Can't wait to hear what the nat. says Spacey. I've been trying to decide whether to take that route so would really be interested in hearing what they say.
O and question for you-do you thing becoming a veg. has helped you? I used to eat meat all the time but I've noticed that I have cut way back because sometimes just looking at it makes me cringe??? Really weird to me as I've never had that reaction before :lol:
Mel - as for the new guy. Not sure if you have told him yet but it is important that you do. You ARE worth making the changes for your health and if he can't accept it then he really isn't the right guy for you. If he walks out then it's HIS fault not yours. You can't help the cards you were dealt and you need (and will find) someone that will love and accept YOU for the person you are, not the person they want you to be. My dh and I have had some issues with this, mainly with him saying "You weren't like this when we got married" I told him that I didn't ask for this and if he couldn't handle it then he needed to leave. He married me for better or worse, sickness or health and unfortunately we got dealt the sickness card before most couples have to deal with it. WE have slowly adjusted and he is more able to handle the "issues" that I have. It really helped him to talk to a friend that had a wife with Lupus so he could understand he wasn't alone and that I really wasn't crazy. I think we (I know *I* do) that in a relationship we aren't the only ones dealing with Lupus. I know we are the ones with the disease itself, but it really affects our partner more than I thought, which makes sense since you are with them day in and day out. I think for my dh the hard part was (and is) accepting that he can't "fix" me. It's all about acceptance I think. Anyway, I just wanted to let you know that we are hear to listen whether it be good or bad, but I really hope it turned out well for you if you did tell him. {{{HUG}}}

spacey
05-03-2005, 10:03 PM
Hi update on naturapath: they took blood and friday they will let me know what treatments I will get. Being a veggie kept me flare free for over 4 years. I truly believe that of course doctors don't, but thats o.k. Recently I have been way overdoing at work and home, coaching my doctors basketball, working 12 hours a day..... :twisted: Started to get little signs and ignored them, bigger signs and ignored them, and then I was done in. Could not move, pain, swelling....I think the hormones or additives or something makes me sick. I would literally get sick in my stomach if I looked at or ate meat or chicken. So I stopped eating it and felt so much better. So I am really hoping all goes well friday. sss Stay well :!: :!:

silverlioness
05-17-2005, 10:26 PM
TracyDawn's first post feels like a page out of my life story. I feel like I'm falling apart almost every day. I get weird bruises, too. Doctors ask if I bruise easy- not really, I just get unexplained bruises. I've made that same "joke" about the autopsy. In fact, just yesterday to my mother-in-law. I get the "I don't know" all the time, too. I want so bad to say "then find someone who does." What kind of a doctor sends a patient home with "I don't know" as a diagnosis?

Luckily, my rheumatologist has good availability, but he mostly works with other illnesses. Unfortunately, no one ever offers me pain medicine. I have to force myself out of bed every day and they give me Celebrex. Yea.

I've been sick a long time, but just got diagnosed three years ago. I figured it out on my own at first. It was a relief to know I'm not crazy. I know no one in our families understand. My mom wouldn't even believe I had lupus until last year.

derlinda
05-18-2005, 05:45 AM
hi silverlioness,

sounds like you are not getting the support you need, i know how that feels. i have been using web sites like these for help and it has done me a world of good. i have gotten some great advice and feed back.

i also live in colorado, i think it's really hard on us because we are so close to the sun. i have bben sick for a while and i am working really hard on just taking it a day at a time :roll: , the more my attutude shifts the less my body hurts.

do you go to denver for your doc?

best,
melinda

pharmacygirl34
05-18-2005, 09:00 AM
Oh my gosh, ditto on all of it. And you are right this website has been the only saving grace I have had after being sent through a variety of doctors and feeling like a meat platter being served for all but no one will say if its good or not. I will be so glad when the medical community as a whole understands Lupus. They have put so much effort into the outerspace things like mars but can't explain our Lupus. It is coming though. The more people (sadly) that have this the more this community will come together for the better of our peoples.

Hang in there, because here we do understand and we know your not crazy. I thought the same thing for many years but now I have an answer. Half the battle there, just knowing what is wrong. Second half, how can we fix it.

Here there are so many people that have tried so many different types of therapy that it gives us lupies something to go on and try to better our lives. If something doesn't work, its okay back to the drawing to board to try another remedy.

I have found that what works one day on me doesn't neccesarily work on me the following week. It is a day by day struggle, an added challenge the life we are given.

Your mental thoughts and process's will be your best weapon when your body fails to comply with your standards. It can be hard to be upbeat when you are in so much pain and have been debilatized in some way. But you do have this site and somebody will listen. It may take a while for a reply and it maynot, however you will be heard by someone who is hear because of our common challenge.

Hang in there. Keep your spirits up. It is all you have got and nobody or no disease can steal that away from you, unless you let them. I keep telling my self this and when I get down I come to this site and I feel better when I leave it. I have vented, and hopefully gained some insite where there was none before.

Love to hear from you gals,
Angela

Poncho
05-18-2005, 06:53 PM
Hi Everyone, I have been to so many doctors, treatments, clinics and hospitals I lost count. What I did not lose count of was which doctors helped me the most as my time with Lupus and Ra increased. Some Rheumies I sware are retarded I tell them the same thing like every 5 minutes then they look at me as if I am insane about what I told them, so I said chuck this I show them where it hurts and explain exactly what the hurt feels like. I am on 20 kinds of meds and the problem for many people with Lupus and RA is those meds stop working after a period of time because they were orginally made for short term use. The doctors have nothing to replace them except pain, sleep, or depression medications, or medications like aspirin, tylenol etc which after taking 12-16 a day you realize you need to increase to narcotic strength pain killers. When these dont work they suggest pain clinics and yes all kinds of alternative therapy, beware of lumbar blocks, they could help one minute the next make you worse. And also dont spend $ on everything people suggest to you that is supposed to help you think painfree and stressfree. My aunt sold my parents and I pignoginol it turned out to be tree bark. Don't get desperate like we did, look somewhere else like within yourself and review others wwho have years of experience in sickn ess. Please dont take chances in the sun in any manner shape or form until you find out what your sensitivity level is. Stay inside and find out what you can and cant do there first, then work your way outside. I am seriously thinking about a morphine patch because the doctors informed me that my intense pain is from soft bones and RA in every connecting joint in my body. It's addictive and I need to remember that I can get extremely depressed but what am I now? What are you now? That to me is the question you need to think about first and foremost. What will benefit you and aid you in being able to do the simple things in life others take for granted? Tough questions, tough love, tons of tears, tons of laughter and alot of 1 song that fits the situations best for me I sing it out and sometimes make it my prayer to God, It's I Can't Get No Satisfaction by the Rolling Stones, Remember its not because we haven't Tried.

silverlioness
05-18-2005, 11:15 PM
Hey Melinda-

My doctor is in Lakewood. I originally went to a doctor in Denver. His office was in an annex to St. Anthony's Central Hospital. He didn't even deal with autoimmune disorders and saw me anyway. He told me I didn't have lupus that my primary care was just being over-zealous. So, I changed doctors. I like the guy I see now. He's a little strange, though. Thanks for responding.