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View Full Version : Scariest week ever!!



Sarah2010
07-27-2010, 03:36 PM
SO my fellow lupies, it's been over a week since i've been plugged into the outside world! It feels so good to be back...So in my recent threads, i've complained about weakness, pain, fever, chills, nausea etc.etc.....I couldn't have been more right for complaining about these symptoms because I was SICK.
Wed. morning my mom called the ambulance to come get me, I was virtually non responsive, I couldnt walk, was faint etc..they brought me in and gave me IV fluids, and tylenol for my scortching 103.5 fever and did a througho exmiation. they gave me a chest x ray, CT scan..the whole works...Without finding out results, they admitted me to a room, because, they knew I was sick, and wasnt going to be sent home in that condition....ANYWAYS..long story short....It turns out my body was trying to fight some sort of infection, and couldnt because I was severley anemic. The first thing they did was give me a blood transfusion...that was verry scary, but it seems to have worked!! I also had a lymphnoid biopsy done yesterday, and am still waiting for the results. I am finally home today after 6 gruling days in the hospital..but I am feeling a little bettter. They arnt exactly sure where the infection was comming from, but i've been pumped full of antibiotics and steriods and am going to take it verry slowly untill I get my land legs back. Ive never been so scared in my life....Lupus is a scary thing!!!! I just wanted to let u in on my scary experience this past week...thanks for listening. XO
-Sarah

Angel Oliver
07-27-2010, 03:54 PM
OMG Sarah,

Im sorry to hear what a very bad week you have had.But so glad they helped you feel a little better and get some tests done.I hope you keep resting and let us know when you get the results back.Hope you feel allot better soon.Keep posting when you can.

lots of love
Amanda.xxxx

Linda From Australia
07-27-2010, 06:20 PM
Rest up Sarah and try to do something you enjoy during your down time - perhaps start reading a series of novels to get your mind off everything that pulls you down.

slim
07-27-2010, 07:43 PM
Hi fellow floridian

I can understand what you mean about a rough week this year is what i call hospital year. Last vist in june had to be wheeled out of my Rheumatologist office to the Er after getting IV because the pain was so great I couldn't move. Prior to that went to the ER for flare up and pain radiating down my left arm which i couldn't move and found out that I
had two disk in my neck that were basically mush and had to have surgery two days later so I wouldn't end up paralyze from the neck down. I was out of commision for 6 weeks
and ill know in October if I am completely healed or if I go back under the knife and this time my neurosurgeon would remove a bone from my hip to replace the titanium i now have. i am currently having a flare up and and muscle spasms from the left side of my neck to my scapula and had to have 3 IM injections from my neck to scapula and today had 500mg of solumedrol and another dose tomorrow. I am usually a hard headed person and won't get treatment until I litteraly can't walk. I have a high tolerance for pain and I am constantly fighting my lupus because I refused to let it beat me. I'll tell you what my Rheumatologist told me "Life is a bitch and it just so happens to be happening to you" I love that because I have a weird since of humor. So I leave you with this yes this is a scary disease but you will get through it take it one flare up at a time and leave the what if at the door their ain't shit we can do about it! FEEL BETTET. SLIM

Sarah2010
07-28-2010, 06:28 AM
Hey guys...thanks for listening..It helps to just get it off of your chest how scary things have been, because I know that some of you have been in the same or similar situations. I am at home recovering nicely, and had a fantastic nights sleep last night FINALLY!! I didnt have a nurse checking my vitals every 3 hrs, or a blood draw in the middle of the night, or that pesky night light that they have in the rooms at hospitals...lol..I am just taking things slowly because i'm scared to every feel that badly again...I'll tell you what, getting a blood transfusion, when needed is fantastic, I fel better than I have in a long time. Linda, I se that you are anemic...how do you mangage yours? Have u ever had a transfusion?? I'll let u all know the reslts of the biopsy in the nxt few days. Untill then, lets "Keep on, Keeping on"!!! XOXOX Really do love you guys. TTYs
-Sarah

SandyR
07-28-2010, 07:03 AM
Oh Sarah I am sorry to hear about such a bad week. Flares are so scarey when they stop us in our tracks. I am glad your mom was there with you and knew to call an ambulance and that things are beginning to feel a little better.

Linda From Australia
07-28-2010, 07:07 AM
Sarah it is good that you are starting to feel a bit better. When I took my daughter to see a doctor on Monday, I told him about my Lupus and he told me to make sure that if I had a good day, to only do 50% of what I have planned or I will be sorry for days later. Boy is he right.

I am not really coping with the tiredness, (also the nausea and the runs from Plaquenil) I have been taking iron tablets for a month now (Only been diagnosed for SLE for a month) and I am more tired than ever!!!! This is the second week back at school after the kids had a 2 week winter break. After teaching all morning, by lunch time I really feel that I need to go home and sleep, but I can't. I didn't have any classes this morning so I went in at lunch time. I managed better for the afternoon lessons. Tuesdays I have a student free period just after lunch, so the break gives me enough energy to teach for the last lesson of the day. This is the same for Fridays. But on Mondays and Thursdays I teach all day and I am finding it difficult to cope. Mind you, the blood transfusion idea sounds like fun... I wonder how I can manage to get one.

Sarah I was remembering about how when you were first diagnosed, you strongly resisted taking any medication - you thought you could fight this disease by healthy living - and then BAMMMM you found out what the consequences of that was. Well you are teaching me very important lessons - to live a healthy life and to listen to my doctors and take whatever is offered to me. When I see the Rhuemy for the first time on August 27 I am going to ask him to hit me with everything in order to control this disease so I can get on with my life. It is a pity you got so sick so quickly, that is one thing I do not want to happen to me. I really want my kidneys to get sorted, but I just have to wait for a few more weeks yet.

rob
07-28-2010, 08:33 AM
Hey guys...thanks for listening..It helps to just get it off of your chest how scary things have been, because I know that some of you have been in the same or similar situations. I am at home recovering nicely, and had a fantastic nights sleep last night FINALLY!! I didnt have a nurse checking my vitals every 3 hrs, or a blood draw in the middle of the night, or that pesky night light that they have in the rooms at hospitals...lol..I am just taking things slowly because i'm scared to every feel that badly again...I'll tell you what, getting a blood transfusion, when needed is fantastic, I fel better than I have in a long time. Linda, I se that you are anemic...how do you mangage yours? Have u ever had a transfusion?? I'll let u all know the reslts of the biopsy in the nxt few days. Untill then, lets "Keep on, Keeping on"!!! XOXOX Really do love you guys. TTYs
-Sarah

Hi Sarah,

I'm very glad to hear that you are back at home, and starting to feel better. It's amazing what just one good night's sleep can do for a person. Go easy on yourself, and take things slowly for now.

Rob

Sarah2010
07-28-2010, 03:39 PM
Linda. That is funny that you remember my resistance to the medication in the beginning. I now know, more than ever, that if you want to get better, stay better, or even function....YOU HAVE TO TAKE THE MEDS!!!! For the first time in my life, before I went to bed last night, I was wishing it was morning already so I could take my next dose of Prednisone and Plaqulnil!! I was hypersensitive to the side effects of the medicine in the beginning, but now I know that a little weight gain, nausea and jitters has got nothing on the alternative..which is being sick to death in a hospital. So with open arms I LOVE my lupus medications!!!!!!! I'm a changed woman :). Linda, hang in there with the fatigue..I can relate..but now that my meds are almost right, I am feeling less tired. (Dont get me wrong, I still take a power nap almost every day :)) Make sure when you see your Rhumy on the 27th, that you listen to him!!! They get paid the big bucks for a reason....I had to learn the hard way, and would hate for you to do the same. TTYS
-Sarah

Sarah2010
07-28-2010, 03:46 PM
Linda, one more thing...I had a transfusion because my blood count was wayyyyy super low and couldnt be corrected with just iron supplements fast enough... I am taking iron pills in adition to the transfusion also. Maybe talk to your doctor about it, it might be the boost you kneed to get you on the healing path..I swear by it!!! Its like getting your oil changed...everything is just running better..lol..
Also, now that I feel so strongly about blood transfusions and how important they are, I was on the red cross web stie, and am looking to host a blood drive in my community!!! Im feeling super proactive!!!! I want more people to get involved with something as easy and important as donating blood! Of course I wont be donating...but I will serve refreshments :)C'mon lets join together and do some good for our community and others!!! YAY BLOOD!!!

jmail
07-28-2010, 05:12 PM
What kind of anemia do you have, Sarah2010? I'm mildly IgG and IgM low. One of those two (the IgG??) has numbers 2 and 4. It's a sitch where you can't fight-off infections, and have to go to the doc at the first sign of a sinus infection or head cold... Sort of scary, but at least I don't have to do the transfusions (and I hope NOT to have to)... Sorry to hear of the ordeal, but glad your feeling better, and strong-willed about the meds... lol

Sarah2010
07-28-2010, 05:56 PM
Hey JMail,
Im not sure what type of anemia i have. I'll ask the doctor next check up..I actually didn't know that their was more than one type. Whatever the type I have...I think its the one where my body can't fight off infection. Because before i went to the hospital, I was fighting a sinus infection and the FLu at home with antibiotcs..and my little body just wasnt cutting it...so........I guess i'll have to learn more about anemia....I did have steak for dinner tonight( it was delicious)...I'm not the steak type...but im gonna get that iron up and keep it up if its the last thing I do!!
-Sarah

jmail
07-28-2010, 07:14 PM
Spinach... ee-yuck - but I eat it now... lol

Sarah2010
07-29-2010, 06:23 PM
Wanted to let u all know that my biopsy report came back NORMAL today!!!! YYYYYYAAAAAAAAAAAAAAAAAAA!!!!!!!!! Woot woot!!!! Im so happy!!!

Serenity81
07-29-2010, 07:12 PM
I love the oil change analogy! I seriously laughed out loud, & my dog looked at me strange... but hey.

I'm so glad to hear you're feeling better after that crazy week, I can definitely understand why you were so scared.
I tend to be pretty stubborn myself, I think maybe we all are because most of us go so long having docs telling us there's nothing wrong that we get so used to just trudging through and making due. Once I got my diagnosis, I was alot like you, thinking I could make due without meds. Even now, it's hard for me to look back and see how far I've come because I still have more bad days than good, but on the really bad days, it's easier to see just how much better I had been feeling up until that point (if that makes sense).

It's a long road, but I'm hoping for some consistent good days in the future, for myself and all of my lupie friends here, too. =)

Nonna
07-30-2010, 05:23 AM
Sarah, glad your scary week is over. Rest up and stay healthy. I'm celebrating your biopsy results with you.

Nonna
twitch. Twitch

Hunniebun
07-31-2010, 12:33 PM
Geeze Sarah, I am sorry that happened and glad that you are alright now! The same kind of thing happened to me back when I was 16 years old, almost all my white blood cells were wiped out, was seizuring right there in the ER, I nearly lost my life and they had no idea why back then, I was in the hospital for a week or so.
I've never had a blood transfusion though.

Good that your biopsy is normal, and keep on those medications!

Sarah2010
08-01-2010, 06:54 AM
Hey Jmail...

I went to the Dr the other day...turns out I have autoimmune hemolytic anemia...I dont know too much about it, but I know that it causes my red blood cells to burst, thats why they disappear so quickly....I am still learning about it...
-Sarah
P.S. It was cloudy and overcast here yesterday, so I finally got to go outside and get some exercise...I got in the pool and stretched my achy joints, and took one lap around my house and yard....I didnt move mountains, lol..but I did get moving!!! It felt good :) I was exhausted afterwards..I have a LONG ay to go....

debbie-b
08-01-2010, 07:31 AM
Linda, one more thing...I had a transfusion because my blood count was wayyyyy super low and couldnt be corrected with just iron supplements fast enough... I am taking iron pills in adition to the transfusion also. Maybe talk to your doctor about it, it might be the boost you kneed to get you on the healing path..I swear by it!!! Its like getting your oil changed...everything is just running better..lol..
Also, now that I feel so strongly about blood transfusions and how important they are, I was on the red cross web stie, and am looking to host a blood drive in my community!!! Im feeling super proactive!!!! I want more people to get involved with something as easy and important as donating blood! Of course I wont be donating...but I will serve refreshments :)C'mon lets join together and do some good for our community and others!!! YAY BLOOD!!!

I am glad, that the transfusion made feel so much better.
Here is an idea for your blood drive, put up a big sign that reads:

HUMAN OIL CHANGE HERE.

Debbie

debbie-b
08-01-2010, 07:33 AM
Hey Jmail...

I went to the Dr the other day...turns out I have autoimmune hemolytic anemia...I dont know too much about it, but I know that it causes my red blood cells to burst, thats why they disappear so quickly....I am still learning about it...
-Sarah
P.S. It was cloudy and overcast here yesterday, so I finally got to go outside and get some exercise...I got in the pool and stretched my achy joints, and took one lap around my house and yard....I didnt move mountains, lol..but I did get moving!!! It felt good :) I was exhausted afterwards..I have a LONG ay to go....

Oh wow, I have had hemolytic anemia. I will tell you my story later tonight, it's a long story. I have to go to work now.

Debbie

Sarah2010
08-01-2010, 02:06 PM
Debbie....
Im seriously laughing out loud "HUMAN OIL CHANGE"..that is so funny...I wonder if it will bring in more donors?? I saw you said that u HAD that type of anemia...that makes me hopeful that mine can go away. Id love to hear your story when u have time. I'd also love to learn more about it myself, i'm scared that it can happen badly again, and i'd like to learn how to prevent it. TTYS
-Sarah

debbie-b
08-01-2010, 05:56 PM
Ok Sarah here goes my story.
In 1979, I was 5 months pregnant with my second child, it was 31 years ago, but I remember all the little details, like it was yesterday.
All of a sudden, I started feeling really weak, I couldn't even lift my one and a half year old daughter, who was a feather weight. Then I started to hear my own heart beat in my ear.
Went to my doctor he did not find anything wrong, except that my blood pressure was low.
A few days later I went grocery shopping and passed out. Ambulance was called and with my little daughter placed on my legs, I was taken to the hospital.
I was admitted right away. Blood tests have shown, my hemoglobin was at 2.6, at 2.0 you usually slip into a coma.
I have received 22, yes, 22 blood transfusions, they where immediatly destroyed, as soon as the blood got onto my bloodstream. It was very painful, when my body was fighting of that new blood, I started shaking, like I have never done before, so bad, it hurt.
The doctor was baffeled, he had never seen a case like this in a pregnant woman. He even did a direct transfusion, from a family member.
It was so bad, that they didn't know, if I could be able to stay pregnant.
He started me on the highest dosage of cortison ( it was called Urbason in Germany)
that has ever been given to anybody. I don't remember the dosage anymore, but when I was released from the hospital 3 MONTHS later, I was send home with a 100 mg a day.
Needless to say, I have had the moonface, big time.
Long story short, after my second daughter was born, ( thank God, she was healthy), I was weaned off the cortison and things went back to normal.
They had no idea, where all this came from. The doc was joking, that I was carrying a vampire.
Now this many years later my rheumy is convinced, that I had lupus back then, but was not diagnosed until three years ago.
The oncologist in Germany told me, to eat alot of canned mandarines. Which I still do.
It sounds scary and it was, but if you listen to your body, you can prevent it, from ever becoming life threatening.
I hope my story helps you a little bit. Make sure you get your blood checked regulary.
Feel better.

Debbie

Sarah2010
08-01-2010, 06:33 PM
Hi Debbie..
Thank you for sharing your story with me :) I am so thankful that you had a healthy safe delivery after all that u had been through...I am shocked that you have had 22 transfusions!!!! seriously, my jaw dropped when I saw that number....I cant believe that your body was rejecting the blood...I wonder if they know why it was doing that. Also, before i recieved my transfusion, I was sooo scared that I was going to have an adverse reaction...THANK GOD I didn't, and that it really helped me. I also can't believe how low your blood count was!!! I was only at about a 7 and they transfused right away...I am so sorry that u had to deal with that, im sure it was a very scary time for you, especially while you were pregnant...Im sure u had undiagnosed lupus then..maybe if they would have known it was lupus they could have treated u differently somehow... SO anyways...you dont have the anemia anymore?? Did it just go away?? Do you take a daily iron supplement? Are you talking about canned mandarin oranges? I'm sorryI have soooo many questions for you about this...but i dont want this ever to happen again, and I want to take the right steps in preventing this.. And also I do get my blood checked regularly...about once every 2 weeks or so.never longer...TTYS XO
-Sarah

debbie-b
08-01-2010, 07:00 PM
Hi Debbie..
Thank you for sharing your story with me :) I am so thankful that you had a healthy safe delivery after all that u had been through...I am shocked that you have had 22 transfusions!!!! seriously, my jaw dropped when I saw that number....I cant believe that your body was rejecting the blood...I wonder if they know why it was doing that. Also, before i recieved my transfusion, I was sooo scared that I was going to have an adverse reaction...THANK GOD I didn't, and that it really helped me. I also can't believe how low your blood count was!!! I was only at about a 7 and they transfused right away...I am so sorry that u had to deal with that, im sure it was a very scary time for you, especially while you were pregnant...Im sure u had undiagnosed lupus then..maybe if they would have known it was lupus they could have treated u differently somehow... SO anyways...you dont have the anemia anymore?? Did it just go away?? Do you take a daily iron supplement? Are you talking about canned mandarin oranges? I'm sorryI have soooo many questions for you about this...but i dont want this ever to happen again, and I want to take the right steps in preventing this.. And also I do get my blood checked regularly...about once every 2 weeks or so.never longer...TTYS XO
-Sarah

Yes, it all went away. I do get my hemoglobin checked quite often. It is always in the normal range. I don't take any iron pills.
Yes I am talking about the canned mandarin- oranges, he said they have alot of something, I can't remember.
If you get yours checked that often, you have nothing to worry about.

Debbie