What is Normal? Am I Normal?

 

Recently, it has been suggested to me that because I am receiving treatments regularly, the treatments mean that I’m not really sick. The assertion is that on treatment, I lead a “basically healthy” life and that I am “pretty normal”.  Well, let’s go ahead and examine this idea of normal:

  1. The Treatments. One Friday every four weeks I take the day off work for treatment. I have to explain to co-workers each month that no, I cannot respond to emails or dial into their conference calls because I will be at an infusion center. I will be surrounded by other patients and hooked up to an IV pump for 8 hours. I will call my company’s HR hotline to get my monthly confirmation number and explain why I will be out of the office all day. In addition to the 13 daily medications I take, I will now add an over-the-counter cocktail that my doctor and specialty pharmacist came up with to help with my reactions. I will time these meds precisely, or they will not work and a reaction will start. I will spend all day at the infusion center where the choice of activities is: sleeping, reading, playing on my smart phone, or staring at the white brick wall. Once they give you the IV Benadryl, it’s hard to read and you are often forced to sleep. The only food or drink there is what you bring with you.  At the end of the 8 hours, my body is so exhausted from processing all of the fluids that it is difficult to walk to my car. Even my voice sounds tired and affected.  I fight rush hour traffic to get home. Once home, I am physically exhausted but cannot sleep. No position is comfortable as I deal with leg cramps. The rest of my weekend will go as follows. Option A:  I will be weak and tired all day Saturday and Sunday. I will be either in the bed resting or asleep. Option B:  My trusty cocktail has failed, and I will have a reaction to the treatment. I will develop a histamine headache. The headache will be so severe that no pain killer or migraine medicine will touch it. Once the headache begins, the vomiting soon follows. I will spend 12 hours on Sunday with my head in the toilet. Soon, it is Monday and time once again to go back to work. Sounds like how most normal people spend one weekend a month, doesn’t it?

 

  1. The Fatigue. It is the number one complaint I hear from those of us with chronic illness.  Unless you have experienced it, you have no idea. Before I was sick, I could do anything. I remember pulling all-nighters in college. I could do a whole marathon shopping day at the mall and then go out to a movie and dinner date at night. I could work an eight hour day and still do house cleaning or craft projects at night. No more. My most recent shopping trip? It started at 10am, and by noon, I needed to sit down. If I do something major like a college football game, the rest of the weekend is spent recovering in bed. If I have a big party or wedding to attend, I am resting up until the event so I am sure I will be able to go. After working a full time job, it’s all I can do just to eat dinner and get ready for bed. If I go out to dinner on a week night, I spend the rest of the week in bed by 7pm just to make up for it.  And don’t even ask me about housework. Getting through the daily stack of mail can be challenging enough.  Sounding normal yet?

 

  1. It’s Just a Cold. Normal people come down with colds. They miss a couple of days of work. For me, there is no such thing as a cold. When you pass a cold on to me, it manifests as pneumonia, pleurisy, acute bronchitis. For me, it is two weeks of short term disability, IV antibiotics or a possible hospital stay. Girlfriends I meet for dinner or the co-worker in the cube outside of my office hacking up a lung, they all say the same thing:  “It’s just a cold. Calm down.” What they don’t know is what I heard at my most recent doctor’s visit:  “Kelly, one good pneumonia or flu is all it’s going to take to kill you.” Normal worries so far.

 

  1. The Medications. As I mentioned earlier, I take 13 different medications every single day. Most are pills I swallow throughout the day. Twice a day I inject into my stomach. The injection sites sometimes bleed, so most of my clothes have blood stains on them. The meds have to be timed carefully. If they are not, I can vomit my next meal. It takes a long time each week filling up my pill organizer that I must remember to take with me everywhere I go. I have to keep up with 13 prescription refills so as to not run out. And let’s not even discuss how much all of these meds cost, most of which have no generic. I carry an excel spreadsheet list in my wallet of medications, doses, etc. at all times to hand to new doctors. All pretty normal, right?

 

So ok, admittedly I am very lucky that there are treatments for some of the illnesses I have. And mostly when you see me, I look pretty normal. And no, I don’t take that many sick days from work. And I do most things that normal people do. But for those suggesting that I’m not really sick, and that I’m pretty normal- would they like to trade places with me? How about for just a month? They’ll get the treatment, they’ll lead a “pretty normal life”. But if this is normal, you can have it.

Article written by Staff Writer, Kelly Clardy

 

Kelly lives in Atlanta with her husband and kitty. She developed PIDD in 1995, went undiagnosed until 2007, and has been receiving IVIG ever since. She also has: capillary hemangioma of the colon, chronic anemia, Hashimot’os disease, insulin resistance, and a host of other diagnosis. By day, she’s a Senior Project Coordinator and a Zebra. She can be found lurking on twitter, @collie1013 and on Facebook at Kelly Jaeckle Clardy.

©2024butyoudontlooksick.com

  • No body understand that, now while using discoveries of new technology in health science people can get quality medications and has improved their chances of living longer. Simultaneously technologies has their own evil, In my opinion at this time extra peoples are dying as a consequence of highway mishaps and also gruesome impact of climate change. The forthcoming is even awful when battles will likely be fought for water and food.

  • I am a writer BUT the truths I find in here would be “too much for Italians to get into deal with here in Milan”
    It’s much easier to “say I have Ms rather into looking into more” and what it really is.
    Hey at least I’ve not been given any other MED’S since I was told by a PRIVATE doctor that’s got me using ONLY HOMEOPATTIC medicines over here in Milan since 1998 when he told me “you have a virus” since at the hospital I was told “you have something that we don’t know how to classify” so they put on my LIST you have MS.
    That is not something easy to get rid of “other’s” that tell you have MS and “don’t worry.”
    Ironic as I am, I will be labelled like this for my entire life.
    I am normal or what?
    So what others think, I am what I am, if they like it or not.
    Why bother. I’ve got other things to deal with like “what will I get for my PERMANENT DISABILITY PENSION FOR LIFE, when I got bitten in VAN. B.C. and had a high fever in 1991 and thought I’d die.
    But here I am in Milan, Italy even getting found by Dr. Ernie Murkami that got me “inspired” into looking into what that darn VIRUS of MINE really is? Other to do what more? Helping others in dealing with it them selves through “MY OWN HUMOUR?” How about to “LISTEN WHAT I AM TALKING ABOUT?”
    Am I normal DO really normal people do what I am doing?
    No, not at all. Too simple.

  • Ellie

    I have so often exactly what is normal.. Normal considering the disease and other things we have, normal as in the sight of the general population, it is not normal to have to take 13 pills every morning? Is it normal to have to remember, since you are disabled and go nowhere, have no clue what day or time it is so when lunch is at 6 PM since you were awake at 4 am trying to deal with what is wrong??????? So these meds I take three times a day with breakfast lunch and dinner, just when do I take them???? I appreciate my prior life, I think about it often. My life now is NOT normal! How do you go about making a life that is disease ridden normal????

  • Alex

    OMG! I can so relate! I have FM, CFS, IBS and a few other alphabet soup diagnoses. The fatigue sucks major. I just caught a cold. luckily my colds don’t usually lead top pneumonia or anything but they still hit me pretty hard. I used to be on approximately 30 medications, vitamins and minerals in the forms of pills, injections, patches and a couple of other delivery systems and I would carry around a laminated spreadsheet with all my meds and dosages and what not. It’s like you were writing about my life! And my friends and family like to say my life is pretty normal too. As if! Feeling like an 80 year old at 23 is sooo not normal. Great article!

  • Nancy Johnstone

    This is so descriptive! Well done–wish I could explain even to some close friends–just how it is. I missed a board meeting last night–haven’t been able to drive to get groceries, etc. in over a week. My daughter got me some groceries Sunday, but it’s a long trip for her, over 60 miles round trip. I’ve been much worse the last year or so. I’ve got another sinus/ear infection right now. I’m also having bad side effects from the IVIG, which is every 3 weeks. I’m fairly new to this group; I don’t know what a ZEBRA is?? Thanks for the support and understanding.

  • Teresa Cook

    Just a question but has anybody truly found something that helps for pain from fibro and lupus flares?
    Also great article…

  • natty

    Wow Kelly, you have just described exactly what people think of my life too.
    How though do you explain to the healthy people what it’s like?
    My ‘friends’ at work would just read your excellent article and shrug, thinking we are exaggerating.
    I guess they are lucky because they don’t understand and haven’t experienced it.
    But a lack of experience so commonly turns into a lack of interest, or worse, just uncaring intollerance.
    I work with doctors and yet they think I am normal because I look it.
    Their patients with the same conditions as me are treated as very special but because I turn up for work most days, they ignore my suffering completely.
    Keep strong, although there is no answer to the problem, at least we are not alone.

  • Elyce

    Such a powerful article. Thank you for sharing it, reminding us to think and think again about how we perceive or judge others.

    (and by us I’m still someone recovering from breast cancer, but the prognosis is good and I don’t have complications, so I guess that makes me “normal” lol)

  • Colleen

    Thank you so much for this. THis is the first time I am writing although I have read these posts often. It has been three years struggling for a diagnosis and still not completely clear about that. But I find it is not only family and friends that look at me as if I should be normal or able to function normally. It is often me too! Do any of you struggle with that? With medication and rest I have a few good days or a few great hours. Then my mind says this is over. Or it never was. The denial or hope or optimism or guilt say I should be able to keep up and to function and re-join the fray. Then the medications and side effects and fatigue and other symptoms return. They may be a bit less – but the uncertainty of how they show up reminds me it is real. It is important to keep working hard and keep fighting and although staying positive – keep aware of what the new “normal” is for me. Do you all go through that? Does it get better? Thanks for all of you and people who will share their experiences.

  • Fran

    Ohhhhhhhhhhhhhhhhhh – to be ‘normal’

  • Collie1013

    Thanks everyone for reading the article! And thanks so much for your comments! I so appreciate it! As for the Zebra– that’s what the PIDD community patients are called (Primary Immune Deficiency Disease). Short definition- in med school, docs are told “if you hear hoofbeats, think horse, not zebra.” But, in the PIDD community- we are the zebras- nothing is normal with us. I actually had a doc say that to me once, “Kelly, we are looking for horses here, not zebras.” Ah-how very wrong he was. Nancy J- if you’d like- send me a direct message – I’d love to give you info on the “cocktail” – it’s been a life saver for me. Before the cocktail, I ended up in the ER after IVIG. Has made a huge difference in my reactions. thanks again! wishing you all tons of spoons! we need them I know! -kelly

  • Miranda – I meant to ask about the zebra too!

  • Dottie Balin

    Kelly, excellent article. I can relate to your article very much. Especially with “It’s just a cold.” With Lupus, MS, Fibro, and a host of many other health issues to numerous to mention, I can understand. My family looks at me very strange, when I ask if anyone has a cold before I plan on a visit. Thank you for sharing your story. Be strong and keep writing. 🙂

  • michelle

    Wow you hit the nail on the head with the fatigue! Im on social security disability and I have a 16 year old daughter who has health issues also. She takes up alot of my energy and no one understands when I say Im tired. They say well dont you have like a million hours stored up by now? Dont ya just love those comments! Try dealing with your illness and your childs illness and mix in some teenage hormones and drama and see how much enerygy you will have! I should have said that but I didnt I was too nice!

  • zebra in california

    Love the article. Too many people see me as ‘normal’ because 80% of the time I can manage my energy and do alot of things. Can’t do everything I did before I got sick and I continue to improve BUT am tired of people looking at me like I’m either normal OR those that know I’m sick underneath just treating me like I’m an invalid. I am who I am – depending on the day and time. I’m fortunate to be sick because it put a whole new perspective on life and I’m even more fortunate I’ve been able to progress in health. But don’t judge me either way!

  • Candy

    I think I’m pretty normal. But I guess if you would ask others, I gather they might say different. lol
    Currently my mother and I are estranged…we were getting along okay for a while. She had a fall a few months ago and I had gotten in the habit of going to see her as often as I could. It was better than sitting here, within the isolated retirement community where I live. I haven’t really liked staying home lately…was too lonely for me. I do go out but mainly for errands and such. Going to see her gave me a chance to escape some of the unpleasant things I deal with living all by myself….unfortunately, that time seems…I don’t know…

    Been having problems with my computer but in some ways, I still am starting to have regrets I ever got the darn thing. lol
    Have met some who have completely misunderstood me and my intentions….or abandoned me when I needed them the most. I know I am hard to deal with sometimes but I hate to think that when the going gets REALLY tough, I will have no one around left who understands. I admit I can be overly sensitive but unlike my brother, I want to avoid becoming so bitter that I shut down completely. But it seems when I do something others do (like complain or innocently ask about or for something), I get labeled as manipulative or accused of feeling sorry for myself. My mom has been independent for awhile but her fall has required her to get a cane and she HATES it. She tells me she never thought she would be in the position she is now. I feel the same way…but like I said to her, “I don’t feel there’s anything wrong if you have periods when you feel sorry for yourself”. At least she seems to have friends who understand and ones she can depend on, no matter what kind of mood she is in. Lately, I have felt that has been lacking in MY life. Was in a depression group on Facebook and they seemed to be the ONLY ones who “get it”. I have had lupus for YEARS…but it hurts more than someone else I “met” who also has the same thing acts like she hates me now. I doubt she would even spit on me if I was on fire. lol

    Maybe I don’t do as well as others in juggling my spoons”…but right now, I can’t seem to find many…

  • Fab article! I can’t exactly relate, but in the first few years of my illness I led a completely normal life – normal that is apart from literally dozens of symptoms attacking me from many (most?) angles. So I did all normal activities (albeit some with a lot of difficulty) – definitely normal on the outside. But on the inside, normal? Nowhere near close! What 7-8-9 year old lies down on the floor immediately on enterIng the house after a Saturday afternoon outing and won’t move for hours, preferring sleep on the floor to any number of wonderful treats offered. Those years of leading an almost normal life whilst feeling anything but and thus deemed by other kids and adults a faker were in many ways as difficult as being bedridden, continually dependent on others and with far worse symptoms due to the attitude I faced back then from EVERYONE including teachers and of course doctors. Well done kelly for juggling your life so well with ill health and ill health related issues constantly present in the background (and at least monthly pushing through to the foreground). You clearly know how to make good use of your spoons (whenever anyone has that talent NO-ONE realises how much they’re struggling and suffering). All the best, emily ps I have really really extreme ME/CFS/CFIDS these days.

  • May I ask what a zebra is (other than the African animal?) I am completely lost on this one. Thanks for humoring my ignorance!

  • Jenny – like Crystal said, get a disability lawyer. It worked like a charm for me, I was recording checks within 6 months. They know the right phrasing, and exactly when and what to push on. They gather statements from doctors for you and do all the legwork. Like Crystal mentioned, they only take money if they win, and it’s money you never had in the first place. You really can’t go wrong! Good luck to you. Play your best self when you go into court too. If you need to wrap your wrists or ankles for pain, do it in a contrasting color and wear a skirt so they can see. Use a cane or wheelchair if you have to, explaining this is a bad day for you. Don’t lie, but let them ‘see’ that you are in pain. Most healthy people done believe you are sick or in pain if you look fine, well, hence the name of this website.

    Kelly, another awesome article! I too, am amazed you can work a full time job! You are one tough chick! Keep the great writing coming!

    Miranda

  • I hear it all the time that I look fine. I tell people all the time walk a mile in my foot steps then tell me how it feels to be so exhausted you cannot walk across the floor or you cannot spend time going places with your daughter or you depend on your daughter’s help to do laundry and cook meals. I get so discouraged when I don’t know what I can do from one day to the next.

  • Nancy

    Thanks! I feel less alone, but have said the words that you have written so perfectly. I used to ask my friends if they ever wanted a wheelchair to get around in some days….they laughed and said ‘You’re soooo funny!” I thought my fatigue was the same as all over-worked women. I was wrong. Some people don’t understand what it takes for us to do the smallest tasks – the rest before and after AND the stress of doing it. For a year I lived my life just ticking things off my daily list just to function. That is not living. That is just functioning. I’m working on including some fun into my list……but the list has to go. It’s making me crazy.

  • Wow, you go through a lot, I don’t have all the illnesses that you have and don’t have to go through the iv day, thank the lord. I do take 18 prescription meds a day. I take a total of 41 pills a day between prescriptions and supplements and Sunday mornings are spent filling the weeks supply in the weekly dispenser. I too do not take sick days, as in calling in sick, I force myself to go into work, migrane, pain, cold, whatever, but it’s never enough for management, they get upset that I have to take my sicktime (which I have earned) to go to the Doctor. Huh. Every one else calls in when they have a migrane, when they have a cold, hello, I’m here, I know we have deadlines, I need my job to pay for my meds. Hello. The med list, gotta have it, Dr asks have your meds changed? Out comes the list, lol.

    I really admire all you do. Keep on keepin on.

  • Elspeth

    Remember this – Normal is just a setting on a dryer. 😉

    I’d also recommend a disability lawyer. I had to get one in order to get my disability claim settled. There are lots of good info sheets on this website – http://www.bccpd.bc.ca/advocacypubls.htm#cpppublications

  • Amy

    “isabelle janicaud
    February 20, 2011 at 2:04 am
    its funny,but Lupus has taught me a new kind of ‘normal’…and its awwesome,yes im sick,yes im broken,but i get to watch the native baby birds grow up and just ‘BE”…this is definately a priveledged club.”

    I really love this comment. Learning just to “Be”, living in this moment has really given me a great coping tool. My body finally said “enough”. Sometimes I feel my body energy wither but my soul is still in tact. I try to just roll with what ever and in “rolling” with it have seen some cool things- love my baby birds too.

    Reading the other posts makes me grateful also that my symptoms are managed well right now.

    Loved the article Kelly

  • Crystal

    Jenni – I can highly recommend getting a disability lawyer. They only charge if you win and then the payment is taken out of your back pay before you get it. 3 years ago I decided I had to try for it but went to a lawyer before filing and won my case. It was even retroactive to the last time I’d been able to work 2 years before.

    One of the best tips was when filling out paperwork be very specific. If you say you do laundry write down every step you take like if you have to use a grab tool to pick up the laundry because you can’t bend over.
    Best of luck on your case.

  • Teresa

    I feel the same way Kelly, I don’t get infusions but everybody thinks I’m ok. I have Lupus and now have custody of my 4 grandchildren and sometimes I am so tired that I want to just run as far as I can go. It is not the children’s fault but there mother and father and I don’t know if I can continue doing this.

  • Shari Schindel

    Wonderful article! I also relate. Btw, what is a zebra?

  • Rae

    Very well said. “Normal” is a dream that I have a lot of the time and I’ve realized that I have a new “normal” now than I did before.

    I am recently diagnosed (August of last year) with Psoriatic Arthritis. I am still working on different meds to see what will help. Next month I start Methotrexate which scares the daylights of me. My current meds are helping somewhat, but we want to see if there is something else that might be better.

    And I get the strange looks when I get out my antibacterial hand wipes (wet ones…they are made for kids actually). I carry the little packets that each contain one in my purse, and I have the tub of them in my vehicle and in my book bag (Yes, I’m attempting to get a college degree in the midst of all of this). Because I have skin problems, i can’t use the waterless antibacterials. People loot at me like I’m some kind of germ freak when I use them.

    How do other people on here deal with the anxiety? I find that I now have pre-“event” anxieties when there is something coming up that I really really want to do or feel that I really need to do. I try really hard to fight it, but sometimes it doesn’t work and I know the stress of worrying just makes it worse. I try to be smart and pace myself (save my energy) for it, but I still sometimes spend the day or two before worrying that I won’t feel good enough (have the energy) to do it.

  • Leina Cooper

    Thank you for the wonderful article….I grimace at the thought of how your hands felt after the typing 😛 I really appriciate being able to read about others with illnesses that I can relate to. and @ Jenni: I have been turned down 2 times for disability too. I have lupus, CF, Shorgen’s, Fibro, and Reynaud’s. They say the same thing about me…it felt like you were describing me when you wrote about your days…stay strong and good luck on your hearing!

  • Excellent article and one I can certainly relate to!!

  • Nancy Johnstone

    Great analysis, Kelly. I was diagnosed with CVID in ’04; started getting IVIG then, and was working full time. I was already diabetic, but then pills only. ’05, coronary artery disease; oh yes, osteoarthritis, COPD (26 yrs), asthma, severe allergies; apnea, & various disk problems, & osteoporosis. I’d like more info on your “cocktail” for IVIG; I go to dr’s office, & don’t use more than Tylenol, but am having more side effects. Muscle cramps & pain are more long-lasting. I had to go to part-time teaching Jan ’08, & “retired” early, June ’08. I also get Xolair, but my med list is around 16-18, depending. the last 8 months, I usually can’t drive myself to IVIG, which is every 3 weeks now.
    Fellow travelers, what do you do for side effects? Please help.

  • isabelle janicaud

    its funny,but Lupus has taught me a new kind of ‘normal’…and its awwesome,yes im sick,yes im broken,but i get to watch the native baby birds grow up and just ‘BE”…this is definately a priveledged club.

  • Wow, you don’t take many sick days? I am lucky when I have a day that I can stay out of bed for 8 hours at a time… they are rare. I have FM, Lyme, and CFIDS/ME. It’s been many, many years since I was able to work a full time job, and over 3 yrs since I was able to work part time outside the home. Of course, SS disability does not believe me, they insist that I should be able to get up and go sit at a desk… tehy cannot comprehend that most days I don’t have the energy to even get out of bed and eat, much less shower, get dressed, and drive somewhere! Today, I went out. I woke up at 11am, and managed to eat breakfast, shower, and throw on yoga clothes (which are comfortable, since clothing often hurts), and leave the house by um, 4pm. 5 hours to get myself to the point of leaving the house. And many days I can’t do that much. Remind me how it is I’m supposed to be fit enough to work???

    I have my disability hearing this coming Wednesday, and am terrified. This is my 3rd appeal, and I’ve heard that they really split hairs. Thankfully my doc is standing behind me, but I’ve been warned that I will probably be turned down because I don’t have tons of doc appointments… well, since I haven’t been able to work in over 3 yrs even part time, how on earth am I supposed to go to the doc all the time? Not to mention, there are no cures for my illnesses. I’ve already done all of the treatments that are readily available… I have had much better success with alternative treatments, but they are expensive! I was very fortunate that I was able to get certain alternative treatments as barter for some web work that I am able to do at home on the good days.

    Then again, I don’t think I can walk into my hearing and tell the judge that I am seeing a shaman for my illness and that the root cause is from my parents, my sister, and a past life 😉

  • Cathy

    Ditto! Must share!

  • Tonia

    Great article.

  • Lori

    I can so relate…a common cold turns in brochitus and a sinus infection and the fatigue is just aweful. Vacuming is an all day thing and I sleep or have to rest in my chair for what is left of it. Doing the dishes after cooking…ya right. Walking up stairs is a chore. I have migraines, fibromyalgia and epilepsy and I take a bunch of pills for them just to have what I consider a normal life… Great article! Thank you for writing it!

  • Wow! I thought I had it bad! I am tired all the time and supposedly have fibro along with lots of other no-so-nice maladies. I try to keep the pharmaceuticals to a minimum. diclofenac and excedrin migraine are staples for me. I am accostumed to being in some sort of muscle, joint,bone/tendon pain most of the time. Prescription strength vitamin D., Protonix for my stomach and thats it! I have developed a longing for a great new sleeping pill (selenor) but with my annual prescrition deductible of $100, I cannot afford the selenor so I will just go with what I have. I have ok days and bad days and a few good ones every couple of months. I am grateful to have a working husband. I don;t know how I would get by without him and his support both financially and emotionally. I only hope that my plethora of maladies goes away or at least keeps quiet enough for me to live a somewhat normal life!

  • Dale

    Great article Kelly! You make all of us Zebras proud. Can’t wait to read your next article.

  • Michelle

    I too spend a day at the infusion center, every three weeks though. I receive blood transfusions, and luckily I’m not sick afterwards, I usually feel better. I won’t commit to plans within the next couple of days after because I sometimes get cluster migraines from my back and neck getting twisted up in those vinyl recliners that don’t recline very well for the 8 or 9 hours I’m stuck there. I hear the same thing from people too, that I lead a fairly normal life. That’s what they see. I’m better than a few years ago when I was in a medical crisis for a good 10 months before I started getting the right treatments, in addition to the treatments for the chronic anemia. So I made a list of the hours I put in on treatments, medical management (meds, SSI, etc.) and appointments. When I rattle off the number of hours spent yearly to them, they shut up pretty damn quick.

  • Another great article Kelly!

  • Amy

    Thank you for putting this into words so wonderfully. I think I will keep it handy for those who can’t understand how I feel – I agree with Dana, above – it feels a bit like my story.

  • I can *so* relate! In fact, you could have been writing MY story when you talked about fatigue and colds – I *never* catch a cold anymore. And let’s not even discuss my meds cocktail…

  • Maureen Mcgowan

    Excellent article! I can relate to a degree. I get IVIG also for common variable immune deficiency. I’m lucky to get my infusions at home and I don’t get the reactions. I also have EDS and fibromyalgia and the fatigue is brutal. Thanks again for a great article.