SjoDry is back!

Greetings friends & followers.

I’m back and filled with a jumble of hyper emotions. As all Sjoggies do from time to time, I have been stuck in ‘down & out’ mode for awhile now. That included a 5 day stay in my local hospital, followed by several days at home on my back. Now I know that I have declared many times that I think about retirement more & more. And admittedly, I don’t mind the occasional day of getting caught up on talk shows & Dr. Oz. But truthfully, when faced with several days of incapacitation (I think that’s a word)…the truth of the matter is that I love working & would much rather be productive than wiped out. I’m too neurotic when I am sick and focused on how bad I feel.

In addition to my Sjogren’s, I have now discovered that I have a moderate to severe immune deficiency. I mean, it wasn’t a huge surprise..I always knew about the IgA Deficiency. However, my system has just decided to add an IgG Deficiency with it. The more I research these illnesses that plague me, the more I am intrigued at their connections to each other. Apparently, 25% of people with immune deficiencies will develop autoimmune illness(es). Who knew? I always wanted to be the lucky recipient of something..but I had a lotto type thing in mind…not illness. Anyway…as it turns out, the treatment for these immune deficiencies are what they call IVIG infusions. Apparently, one can receive a once a month IV infusion of the replacement antibodies, or they can be administered in a mode that is called, Sub-Q. I think that still involves a needle under the skin with liquid being injected (just on a regular weekly basis instead of once a month).  I have now had my first infusion at the local hospital infusion center. Well..I guess I can spare you the ugly details of losing my breakfast and move right on to the week from hell that followed.

What I find incredibly frustrating as a patient with chronic & multiple illnesses is never knowing which thing is causing which thing!! Seriously. We Sjogren’s patients always have a fatigue component to our everyday lives that does not go away. After taking my first infusion, I can only describe what happened to me next, as something akin to being hit by a mack truck. And I am really not exaggerating!  The fatigue multiplied to a degree that I can not recall having had since the 1980’s from being treated with a heavy-duty cancer drug (for what I now know was an incorrect diagnosis of Hepatitis C). I suddenly had flu-like symptoms and a low grade fever with chills. As I mentioned before…I found myself trying to figure out what the heck is happening here. Is this a flare? Is this a worsening of all of my chest pains and the pneumonia I was being treated for in the hospital? Or perhaps it has something to do with the Pericardial Cyst that was discovered behind my heart with my recent Cat Scans? Or wait a minute…maybe that infusion did this?? Is this what happens when one gets an IVIG infusion? Of course..I had to go to the Immune Deficiency Forum that I follow & ask those IVIG infusion questions to other immune deficient patients? As it turns out..yes..it is entirely possible and very likely that the infusion of antibodies went into battle with the underlying infections that have maintained permanent residence within SjoDry for so long. Oh my. Is this what I have to look forward to each time I have a treatment?? Yikes! I can only hope that it gets easier over time since this is a treatment that will be required for life.

So that my friends is where and what I have been up to or I suppose I should say, “down to”. But as in most down times… eventually, things look up.  SjoDry is up and at em’ again and feeling much better. And I can at least say that the experience of feeling that wiped out, certainly makes me appreciate whatever my “normal” is. Here’s hoping you are feeling you’re best normal@!

SjoDry

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About vitalsignspgh

Sandy Burkett is the Creative Engineer, President and Owner of Vital Signs. Vital Signs is a certified Native American/Woman-Owned custom sign and graphics company located in Carnegie, PA.
This entry was posted in Random, Searching for Answers, Symptoms and tagged . Bookmark the permalink.

11 Responses to SjoDry is back!

  1. Lisa Welch says:

    Glad to hear you are feeling better, SjoDry! But very sorry you have even more to deal with!

  2. Becky Mc Dowell says:

    My goodness! I think I understand somewhat how you feel. I was recently diagnosed with Gastroparesis (slow stomach emptying) and I believe I feel worse from it than I do with my 10 other conditions added together. But, all we can do is take one day at a time, be thankful for medications & treatments, and enjoy our “good days” when we have them.

    • vitalsignspgh says:

      You’re right Becky. It is one of those things that people tell other people, “Just take it one day at a time”…yet, the reality is that; that is the only thing that we can do. After having a really horrible week, I won’t complain about my yucky normal anymore 😀

      SjoDry

  3. Dee says:

    Hi Sandy,
    Long time, no talk. It sounds as though you have been through the wringer. I am so glad you are making progress. You have been on a very long road and hopefully you will continue to feel better after the infusions. My daughter and I think of you often and laugh at your great sense of humor. Just wanted to check in to see how you are doing and that you are O.K. I am no longer legally blind after two eye surgeries in the past week which is a good thing. A little tougher because of the sicca syndrome. It is tough when you thought your house was clean until you get your vision back and you realize that your house wasn’t clean at all. Take care, think of you often, keep that great sense of humor always.
    Dee

  4. blackbirdatnight says:

    Hi! I have been following your blog for a short while and enjoy reading your posts.

    The thing that strikes me is how different we (people with Sjogren’s or other autoimmune diseases) can be! I have elevated IgG and greatly elevated IgA. I have had no explanation of why this is so, although I see the SSF of America lists elevated immunoglobulins as a potential diagnostic test for Sjogren’s.

    And yet, here you are with a deficiency! These diseases are so complicated and confounding. I understand sometimes why research has not yet got to a place where we have more help, and yet, I wish we did!

    The fatigue seems to be a common component. I honestly find it the most debilitating part of the whole syndrome. You can use eye drops and gels for dryness, but there’s no over the counter remedy for fatigue at the most elemental level. During a flare, I feel like I’m 90 instead of in my forties.

    I hope you feel a little better soon.

    Take care,
    Jane

    • vitalsignspgh says:

      You’re right Jane…it’s crazy! The more I research..the more I keep finding these strange connections.
      I am a regular visitor on the Sjogren’s World Forum…and I kept seeing other Sjoggies on that site talking about their immune deficiencies and IVIG infusions. I was wondering why there were so many of us sharing immune problems also? I found myself thinking that it was like the chicken & the egg question…which came first? I originally thought that the auto-immune problem caused the immune deficiency…I now believe that it was the opposite of that. I learned that 25% of immune deficiency patients will develop an autoimmune condition or two or three. Wow.

      Thanks for your kind thoughts. I do feel better. My horrible post-infusion week made me really appreciate whatever mediocre normal I am used to. I’ll take it!! Have a great rest of the weekend 😀

      SjoDry

      • blackbirdatnight says:

        I haven’t had much time or energy to hang out at Sjogren’s World, but on the occasions I’m looking for knowledge and end up there, I really appreciate it as a source of shared wisdom and experience.

        I’ve likewise dealt with depression long-term, and I’ve been reading a lot about Sjogren’s and depression, and that too seems a chicken-or-the-egg problem. I became depressed before I became ill, but I wonder if the depression was really just one of the first manifesting symptoms.

        I’ve read a lot about autoimmune disorders being kick-started by trauma, and I feel that’s how it started for me. I had a severe episode of food poisoning with months of abdominal pain and nausea, and I never recovered. There seems to be a lot of ways that it can develop, and many theories, and I don’t think any of them are necessarily wrong. We’re all different.

        I understand what you mean about mediocre normal! It’s sad that we have to appreciate that, but like you, I’ll take what I can get!

        Take care,
        Jane

  5. Teresa says:

    Do you think the ivig helped at all? I’m starting it soon and everything I’ve read is scary! I already feel bad and don’t care to feel worse.

    Thanks!

    • vitalsignspgh says:

      Hi Teresa,

      I do think that the treatments are helping. I started the infusions at the end of Aug. I got one respiratory infection a month or so into the treatment (when I had only had 2 treatments & not enough time to build up in my system). But since that time I think that it seems to be working. My fatigue level is still pretty high…but I am happy to have the fatigue vs.chronic infections that continue to drag me down. Try not to let anyone sway you in
      your decision to just give IVIG a try. You are the one that suffers each day. You are the one who will have to learn how to live with this disease daily.

      Good Luck to you!
      SjoDry

      • Teresa says:

        Thanks, did your side effects lessen after you had the first treatment? I’m going to do it if the insurance will approve it. Any helpful hints or coping tips during the process would be great. It is so easy to lose yourself in this disease. Acceptance has been the hardest part!

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