Bad experience this morning and still having one!

    • Anonymous
      May 31, 2009 at 2:55 pm

      Last week I was doing so good. And did a few projects around the house. Was trying to help my husband out in that room he is remodeling for me and painted a ceiling which was a small room. Very small room. Did a little bit of caulking for him and canned my homemade beef stew. It was a great week! I was going to try cutting the grass with our riding lawn mower Friday but my legs were feeling a bit wobbly and my body and mind told me no! Yesterday we got up and went to Lowes and the Produce and hit a big huge Yardsale and I found quite a few things. Have not been to a yardsale in a long time. We came home and I fixed hot dogs for lunch and dinner and I got super sleepy. Felt so drained. So I basically did nothing but rest. That stinken nerve damage stuff! I hate it! For last night I still wanted to sleep and was drained. No energy at all! Lupus causes that when you go into a Flare!
      This morning though I woke up and my head feels numb, my nose feels numb, my ears feel numb and it tingles like a vibrator! Both arms from my fingertips to my shoulder blades are both numb and weak feeling and my legs are going bonkers! I got up out of the recliner this morning and when I did one foot was so dead that it felt parylized and I could not even move it! It turned inwards and I almost fell but was close to the couch to catch myself!
      Andy has made me do nothing today. Constant bedrest! So I am laying around. Being a Sunday and no good doctors at an ER that can handle me! He called my regular doctor and he uped my Steroids again and wants me to contact that Rheumatologist I just recently saw but if I can’t reach that doctor he wants me to go straight to the ER or contact my Neurologist in Wilson. Either way I am to see somebody no matter what tomorrow. If I get any worse today then he does not want me waiting and get myself to the ER.
      Now we all know what’s it like to go to an ER on a Sunday afternoon! Would be a pure joke! But boy am I feeling bad! Even my head feels funny! I hope this higher dose of prednisone helps me! If not then I am in deep trouble. Could be CNS Lupus kicking in again which I have bad luck with on a constant basis. Something they get controlled and then it keeps coming back. But this nerve damage stuff is kicking my @@@ today!
      You know! For those of us that have all the problems we have with GBS, CIDP and Neuropathy. I am giving each and every one of you a Cyber Hug today! None of us don’t diserve this mess! And I wished they had a better treatment that would cure us all!
      Every person on this website being the way they have been dealing with what they have, I truely must say that we are strong in many ways and so supportive. This website truely has some wonderful people! I wished I could meet you all in person. For each person in here is truely very special and a great asset to this site! Well off to bed I go. Can’t seem to keep myself awake today! Hugs family! I love you all so much!
      Linda H

    • Anonymous
      May 31, 2009 at 5:08 pm

      [SIZE=”4″]I hope you feel better Linda. As I was reading your post, I was thinking,Double the steroids!!! I too am fighting a stubborn flair up.Its been aleast a month & a half. Everytime I try to decrease the roids, I feel worse. I don’t want to go to high because of my hip. I’m walking a thin line. [/SIZE]

    • Anonymous
      May 31, 2009 at 10:56 pm


      Hang in there. I am glad you are taking the day off, and even more happy that others are stepping up for you. I hope your days tomorrow and Tuesday are better.

      I was a day of rest today as well. And it was inside. I hated it, the outside was so pretty today after so much rain. Oh well, there will be other sunny days !!

      Take care, and rest.

      Dick S

    • Anonymous
      June 1, 2009 at 7:38 am

      My husband just called his boss and told him he might be in today or might not. He is going to call several doctors today my Rheumy and Neurologist and see whom can see me! One is in Wilson and the other one is in Greenville. Hopefully the Wilson doctor will see me for I really don’t feel like riding to Greenville. Last night was even bad and I am going to increase the steroids again this morning. I kept getting a nerve in my right foot too that was acting up. Sharp sharp pain in the heel of my foot and everytime it would strike pain it went all the way up to my neck like being electrically shocked. Left leg this morning is still dead feeling. I have had motor and sensory nerve damage but the motor nerve damage comes and goes. But this time it hit a certain area and I can barely walk. Been using my wheelchair this morning and yesterday between bedrest. I am already dressed this morning just in case they tellus to come on in. So just waiting for the offices to open up so we can make the calls! I hate taking high doses of steroids too for I fear that word Hip Replacement. I too have weak bones because of long term use and the day is coming when the Prednisone might not help me there either! When it rains it poors. Hope its just a flare and not CNS problems. But the way I felt last night and this morning. I think it’s CNS Lupus. My head was pounding last night.

    • Anonymous
      June 1, 2009 at 9:20 am

      Hope you are feeling better Linda!!! REST!!!!! I’m worn out just reading what you have been up to!! Keep us updated when you are well rested! Take care.

    • Anonymous
      June 1, 2009 at 10:06 am

      Hi Linda,
      I feel so bad for you. I hope you get to a doctor that helps ease the pain. Must have been something in the air yesterday. I too had severe nerve pains in my feet and hands and stayed in bed a lot. Sounds like you did an awful lot. When we feel good we have a tendency to keep going. This is a good reminder we are special and need to take rests. Wish I coyld give you a Cyber hug too. Good luck today.

    • Anonymous
      June 1, 2009 at 10:42 am

      Well we called everybody that I see and the Rhuematologist can’t get me in today but can see me on this coming Monday at 9:45. Said to go to ER if I get worse. So I will just have to suffer a good week, that’s all! 🙁 Unless they get a cancellation and they will call me if that happens. This is bad to say this but everytime I go to an ER in my local area I come home worse than when I got there. LOL! Only thing they will do is check me out and do labs. Once I mention CIDP and Lupus they will give me something to ease my pain and then send me home making me bedridden for several days because I stayed up half the night waiting to be seen and then they tell me to call my Rheumatologist or Neurologist the next day after being seen. I have suffered like this before so I guess one week of more suffering won’t do any more harm. If I think though that the steroids that are increased aren’t going to help and I see myself getting worse tonight then I will go to the stinken ER! But if I go then I will try to sweat it out until 4 in the morning or 5 in the morning. Maybe then I will get lucky and be the first patient they will see! I hate to say this but you all surely don’t want to live in my area. The Healthcare in my area stinks! Unless you travel which I am now doing. But the doctors here are hard to see when you need to see them except for my primary care! I looked online this morning in my area to see how many Rheumatologist were located in my local area. Only 1 which is the birdbrain that caused this mess on me 7 years ago. The rest are all 50 miles away from home. I will just rest and read a book or watch a few good DVD Movies. I have Marley and Me and , Seven Pounds and Twilight which I fell asleep on a few weeks back watching so today I guess will be movie day and will probably fall asleep on them today! LOL! I’m getting offline and Andy is heading out the door to go to work and demanded I stay in bed today! He doesn’t even want me going to the bathroom and fixed my lunch in my portable fridge beside my bed. Yep! We have an emergency station in my bedroom! Portable fridge where he fixes me a sandwich and chips for lunch. 3 cans of soda in the fridge with an ice tray. A couple of fruit cups in the fridge. And then he gets out the Portable toilet chair and sits it at the bedside! He comes home and does not see any urine in that pot, I get reamed a new @@@&&&&! Walker is beside the bed. Wheelchair is beside the bed and the telephone. My meds! Lets just say he has me trapped in where there is no reason for me to get out of bed unless there is a fire! Then I have permission to get out. He will go to work and around lunch time pop in being sneaky checking up on me. Making sure I am not out and about doing a NO NO! Then I will get the every two hours phone call! Hey! I better not complain about him! Not too many husbands or wives are like this when they have a sick family member! My husband is wonderful and very loving. I must say that I am very fortunate to have him in my life! I try my best when I feel good to show him how much I appreciate him being in my life. I try to cook good meals for him and freeze meals so he won’t be over pushed. That is another reason why I have been canning alot making meals for us. He can use them on my bad days and not be busting his back working all day and then come home having to cook! Well I am going to get offline. Time to try and get some rest. The higher dose of steroids this morning is helping a tiny bit. So hopefully today I will start feeling better. But am not going to do anything at all this week! Nothing! Hugs
      Linda H

    • Anonymous
      June 1, 2009 at 5:50 pm

      Hi Linda,
      Glad to hear you are going to rest. I know what you mean about ER’s. For something like this all they can do is give you pain meds. Resting in your own bed sounds more beneficial. Hugs to you and your very caring husband-he sounds wonderful.

    • Anonymous
      June 1, 2009 at 7:13 pm

      I am new to forums. I have cidp which effects my hands/fingers, L more than R. Have been on PE since 9/07, which helps. Had 5 day trial of ivig 11/06, that didnt help & was worse than any chemo I ever remember going thru after dx with b-cell non-Hodgkins Lymphoma 15 yrs ago. I have had various other problems too, but that can wait . I do also have some leg sx & use a rolling walker (buggie) for long walks thru stores, etc……I want to offer my prayers & support to Linda H . You seem to be going thru a particularely ruff patch. …….I have already learned so much from everybody……..Hugs, Jan

    • Anonymous
      June 1, 2009 at 8:50 pm

      Hope your bed rest gets you feeling better this week.

    • Anonymous
      June 2, 2009 at 8:07 am

      Thank-you all family for wishing me well! I’m still resting! The high doses of steriods are helping a tiny bit and I did get some sleep last night which is good!

      Jan! Welcome to the forum! Very nice to meet you and I hope we see you posting with us in here! Got some very nice people in here with alot of support! And we all need that support at times!

      Today I am going to lay in bed and maybe do some sea shell art if my hands let me glue things. Been working on that piece for a while. Might try to finally finish it!

      Today is my Birthday too! Think I might do some browsing in Ebay and see what I want to treat myself with! LOL! Tonight my daughters are coming over and my husband when he gets off of work has a surprise for me! Hmm! Wonder what it is? I really wanted to go out for my Birthday but being sick right now it’s just to risky. So I will enjoy my resting doing nothing around the house day!

      I feel a little better this morning but still not all well! The bad feelings comes and goes. But thank-you all for the kindness in your heart! I hope today we all have a nice day and feel good! Going to be in the mid 90’s here today! And it’s not even summer yet! Hot one! Hugs
      Linda H

    • Anonymous
      June 2, 2009 at 12:14 pm


      Have wonderful birthday

      Hope you have the best day that you can.

      Wonder what the surprise is???


    • Anonymous
      June 2, 2009 at 10:17 pm

      Thank-you Rhonda and Jan! Pleasure to meet you Jan and welcome to the site! Wonderful group we have in here! One big family with different things going on! But we all seem to understand each other and how we are feeling and are very supportive! Not everyday you find a group like this on the internet! Thanks to the internet we can all share our experiences and give one another support! So we hope you come in more often and join the crowd!

      Still feeling rather scanky and got really dizzy this evening. Weather here too is a hot one in the 90’s and humid. Which don’t help much! Plus I had alot of company today due to it being my Birthday. Aunt came over and had a cake and card with $25.00. Sister and mom came buy and there was $30.00 and then my mom gave me $150.00. Then my son mailed me card and there was another $100.00. My daughters went in together and gave me $150.00 and my husband gave me a $100.00. I earned $555.00! LOL!

      They know we have been remodeling a room making it a food pantry. And I wanted to buy a new wood door with a glass screened door. What I wanted was going to cost about $650.00 for both doors! I’m $95.00 short but have that already so maybe in a few weeks I can get my door installed! Remodeling that room has cost us more than we thought. Recession has the cost of everything going bonkers! That one little room has cost us $800.00 so far and then the $650.00 for the door. And then I wanted to buy a new washer and dryer!

      Looks like I am going to have to wait on the washer and dryer. Mine still work and still have good life to them. They are only 6 years old. But I wanted to get a more energy saver kind. That will be my Christmas this year! LOL! My freezer is new though. Bought that last year! So it’s fairly new! But giosh have things gotten high!

      The back board we placed in my kitchen I spent $600.00 for and that was high! It’s rediculious the prices of things right now!
      I am off to bed now! Been so sleepy today and having a time keeping my eyes open. The prednisone is helping some but just a tiny bit. Wished my darn labs would hurry up and get in! Some have come back but 3 have not!

      My CPK was abnormal, Electro Serum Protein is abnormal, ESR was high. ANA was high and we are waiting on IGA IGG and IGM to come in. The ANA is indicting that my lupus is in a nasty flare! If the IGA, IGM and IGG come back showing any positives then he will talk with me on Monday about that. And also wants me to get new labs done on Monday! So we will just wait and see what happens Monday!
      Well off to bed I go! Hugs
      Linda H