TERRIFIED...need some encouragement

Discussion in 'Fibromyalgia Main Forum' started by dd, Jul 9, 2003.

  1. dd

    dd New Member

    I've been sitting here deciding wheter or not to post because I don't want to sound like a cry baby but I really need some encouragement because I am terrified out of my mind.

    I was scheduled to have my 1st IVIG treatment tomorrow...just got a call from the infusion office that they need to move me to Friday morning because the IgG serum won't be there until late tomorrow afternoon. So, now another night of practically no sleep because of the worrying. I have only gotten about 2 hours of sleep in the past 2 nights because I have been laying awake thinking about everything and anything that can go wrong with this treatment. I try not to think like this but I can't help it...my mind just keeps racing and going to all the worst case scenerios that can happen...like a blood clot, severe allergic reaction, etc. I know that I should be concentrating on the positive things that could happen...like getting better but it seems like my mind is in one mode here...TERRIFIED!

    I have called and spoken to the nurse that will be doing the infusion a couple of times. She keeps assuring me that everything will be alright...that it's normal to be scared and that they will keep an eye on me and monitor all my vitals, etc.

    What I really want to do is cancel but I know my whole family is really counting on this to make me better...and so am I if I could just get past this fear. Geez, now I am really sounding like a big baby!

    I just can't even think straight.

    I have been taking Xanax to calm me down and to try to help me sleep but it's not working AT ALL.

    Please, ya'll say a prayer for me. I could really use it right now. Every muscle in my body is so tight from the stress that I can barely move...not to mention the FATIGUE. I already feel like a walking zombie from no sleep.

    Thanks in advance for the replys.


  2. jkd7058

    jkd7058 New Member

    Know that we all are here to support you in anyway we can. Here's a cyber hug to help you through (((((hug))))).

    Let us know how things turn out.
  3. Cactuslil

    Cactuslil New Member

    I does become frightening to go into a procedure especially after some other things have backfired; you do get jumpy.

    It pays to slow things down sometimes and get and give a little more information. I live in absolute horror now of receiving morphine after have an anaphalectic reaction; was told one more shot or tablet and I would be dead before I could call 911; Tardives Dystonia if ever given Thorazine and the local goatroper here was chasing me down the hall with his hypo after I called a procedure from which after four hours of digging the "experts" could not mark the area on the chest wall. To hell!

    Sorry for the tangent but truly, I know how you feel and lay in bed myself; now tied to an O2 concentrator, thankfully as it was a fluke the apnea was discovered; I'm in a chair much of the time and the degeneration was hastened by my decision to go off Pred. after 6-years.

    Debbie....I will be praying for you and your family. I don't want to be the devil's advocate but do listen to that still small voice. Of course your family wants you whole but if we could will ourselves whole we would all be well!

    Just know what you are getting into (forgive me but I've been so out of it I did not recognize the procedure); pray and seek what your higher power is trying to tell you.

    Fear is a powerful thing and I used to be without fear. I am seeking once more to find that element of faith. Butif you have concerns seek answers that may comfort you. Love CactusLil'
  4. JP

    JP New Member


    The waiting and then waiting more is very stressful. Try to concentrate on the Nurse's experience and reassuring words. I had a bit of anxiety before my last procedure, an epidural for pain management. The actual experience was very positive.

    Keep breathing...Jan
  5. dd

    dd New Member

    still scared!!!

  6. Jen F

    Jen F New Member

    I know how awful it is to be terrified and panicked.

    I hate medical procedures too.

    but, this sounds like it will be okay. If you are worried about reactions, perhaps you can ask them to drip it in really slow at first, if you are going to have a reaction you would probably feel it right away and it could then be stopped.

    I bet you will be surprised how much easier it will be than you imagine, but that doesn't help you much right now, does it?

    Keep breathing.

    maybe go have some chocolate ice cream, or something similarly decadent and a real no no and try to focus on that?

    my best wishes are being sent your way.

    See if you can take something strong for the anxiety before hand.

    If you are terrified and can't do it, so be it. I have backed out of a medical procedure before due to fear.
  7. Dogtired

    Dogtired New Member

    Hi Debbie,
    Hang in there, the procedure sounds intimidating to me (not familiar with it). Also sounds like people are pressuring you to "get well" on command. I hope you can let that go - it is not your responsibility to heal at their pace! At this point just getting through it is enough and give yourself credit for having courage (even if you decide not to do it- you always have that option).
    Anyhow, when I am anxious, distractions like a good movie or even just stepping outside for a few minutes helps me calm down a bit.
    Hope it goes well for you!
  8. Dara

    Dara New Member

    is, or what it's for, but I do understand the fear that goes along with having a medical procedure done. I always imagine the worse, and then usually it turns out to be nothing. But, I do have to agree with what some of the other posts said, if you have a "feeling" that it's not right, then I wouldn't do it. I think a lot of us are very intuitive and we should follow those feelings. I also have had severe allergic reactions, I can' spell what it's called but it's something "shock". I ended up in the ER with throat closing, etc. If that is what you are worried about, could they possibly give you an IV of Benadryl just before they do the procedure? When my daughter was being treated for Leukemia she almost always had a bad reaction to the blood transfusions, so they always gave her an IV of Benadryl just as a precaution. If they could do that, maybe you would feel better about it.

    I wish you luck and I'll be thinking of you. I'm sure everything will work out just fine, but if you decide this isn't the right time to do it, just cancel and you can do it later.

    Take Care,
  9. Mikie

    Mikie Moderator

    I'm so sorry for all this delay and stress. I am keeping you in my prayers. When all this is over and you are feeling better and I'm out of this flare, we will get together with Kathy for lunch. Hang in there.

    Love, Mikie
  10. bamboo

    bamboo New Member

    if it would feel helpful to you, tell us more about the purpose of the procedure, etc. either way, like many others, i feel a lot of anxiety when i have to face anything new that will affect my body. i do find that one thing that helps is to learn everything i can about it beforehand. i really applaud your willingness to ask for support here - i will be keeping you in my thoughts through your appointment! <<BIG HUGS TO YOU>>
    we're with you, debbie!
  11. dd

    dd New Member

    Tomorrow I am having IVIG (Intravenous Immunoglobulin)infusion. I was dx'd with a PID (Primary Immune Deficiency) on June 20th...I am low in my total IgG levels and also low in subsets 1 and 3 of the IgG levels. This is probably the cause of my CFS. I did a post a couple weeks ago explaining what PID is...my mind isn't thinking very clearly today but if you want to look at the post, it explains everything in detail.

    Since my body doesn't replenish my immunoglobulins I need to start these infusions to get my levels back into the normal ranges so I can fight infections and get my immune system working again. The replacement immunoglobulin serum comes from blood donors...approx. 50,000 people. These are 'professional' donors for this specific treatment...they have been tested for viruses, HIV, Hep.C, etc and then the blood goes thru a cleansing process that is very detailed before they even give it to a patient.

    The infusion itself takes about 6 - 8 hours. They have to administer it very slowly because the serum itself is very thick and can cause side effects...mostly flu like symptoms but some people get other reactions like anaphalaxis sp? shock, blood clots, very low BP, and some are even allergic to the serum itself. The reason that I am concerned is because I already have servere allergies to almost everything including meds and I also have low BP to start with. They do premedicate with Benedryl and Prednizone to minimize the reactions. I am allergic to Prednizone so they are going to use Solumedrol instead...hope I'm not allergic to that too???

    I will have to get these infusions approx. every 3 weeks...maybe more maybe less depending on how fast my body uses the serum up. It's kind of like 'fueling' the immune system up. When the 'tank' runs low I will have to get 're-fueled'.

    What I am really afraid of is the fear of the 'unknown'. I have STRANGE reactions to things that 'normal' people don't...that is so common with most of us here. The last time I took Benedryl I was very hyper and it made my heart rate go sky high...this is what they use to pre-medicate with. I know it is SUPPOSED to make you drowsy...but not in me.

    I guess I am going to 'suck it up' and go in there with a positive attitude that all will be fine and keep my mind on 'good thoughts' and keep invisioning a healthier future. I am going to take a picture of my 3 children with me to hold onto for inspiration and a couple of Chicken Soup for the Soul books for more inspiration.

    I will let you all know how it goes. If this works well for me maybe it could help others.

    Thank you all for continuing to think of me tomorrow.


  12. pands45

    pands45 New Member

    You are a very brave person to be going through all of this. Hang in there. I will be praying for you as you know we all are. I dont post much, but when I see someone so upset, I want to help in any way I can. You are in my prayers. Good Luck, everything will be ok. :) Sherri
    [This Message was Edited on 07/10/2003]
  13. AnnetClo

    AnnetClo New Member

    I read your post and can really identify with your fear. Even after working 18 years in an ER (or maybe because of that)I still get almost paralyzing fear whenever I have to have any procedure. Like you, it's the fear of the unknown. I go over and over every what if I can think of (at least a dozen times). I wanted so much to cancel my surgery for the fusion in my neck, but didn't because I didn't want to disappoint or inconvenience my family. But honey, we're survivors. We have fought tooth and nail to get some semblance of our "old" life back. And I know you're very strong. I believe in my heart that everything will be fine and I will keep you in my prayers. But saying all that, trust yourself. You know better than anyone else what's best for you. If you need to cancel, do it, but do it without any guilt whatsoever. Just know that your friends here are with you, whatever your decision.