I can totally relate to every question. My Mom is always calling me about the latest fad in boosting my immune system. People always comment that my allergies are bad...I don't have any. Strangers in the store hear me cough or blow my nose and tell me the perfect solution to cure it...I wish. Most of the time it is easier to do as you suggest. I tell them, "yes, I will have to try that" or "yes, allergies are horrible this year" I am tired if trying to explain in 5 minutes all that I go through...it doesn't seem worth it, unless it is a close friend or Family member. Even most of my friends and Family don't get the disease. I have CVID and try to explain it...but they don't seem to grasp it. I am a positive person, so people forget I am sick, even though I struggle everyday. I really appreciate IG living for giving me this outlet. People who totally understand me, more than anyone else! Thanks for all you do!!!

-Amanda from California

We all mean well...
Let's continue to empower our friends and family with Immune Disease...
You are not alone and you can have happy days!!!

I have spent my life deflecting really pushy people about what vitamins and new herbal fads I should try.  So much so that I almost have to be rude to those pushing it because they are certain that is all I need to feel better and they don't drop the issue.  Even after I explain over and over that I'm not vitamin deficient.  Also they don't seem to understand the fact I don't want to throw in a random pill to my mix of 21 I already take.  I always just say "thanks for the advice, I'll look into it"

And the biggest I think is "you look fine."  I've been dealing with that forever.  I know some mean well and just want to  let me know that I look well.  But for others its a judgement.  In fact when I tell people I'm on disability, I always have to explain why because I ALWAYS get a look of judgement - that i'm faking or something.  I think everyone I see always says "how are you feeling" ... and I get  " but you look great"  I always say "well, if i have to be sick, at least I can still look good" sort of make a joke out of it.  

Another one i get is, you need to think  more  positive. This one REALLY makes me angry.  Basically you are saying that I brought this upon myself because I don't think positive enough??? Do you know how hard it is to be all cheery all the time, when you are sick, miserable, and fighting insurance 100% of the time?  Someone once told me if i thought more  positive, I would not  get sick again... I actually had no response to that brilliant comment.

I also get that I should exercise more.  Gee that would be wonderful if I wasn't miserable from chronic fatigue and going to the grocery store wasn't such a major miserly itself.. sure I'll run to the gym with all that extra energy I have.   I usually tell them that I don't have energy to do my daily things I need to get done, that I try to walk when i can" and leave it at that.

There needs to be more education about these diseases.  No one understands them and I find that what people don't understand, they don't try to learn about.

So in part to deal with these misconceptions, I created a blog / diary type thing for people to read, so they could maybe understand a bit of my life better.  

http://detourfromnormal.blogspot.com

I can so relate to all of this...

I have family in the medical field that unfortunately knows nothing about my PIDD (CVID), so they assume I should be able to go back to school and work with out any problems.  It is so frustrating for me because I find myself having to deal with there denial about my daily pain and disabilities.    

I'm at the point where I can't get through to them, I give them links & literature,  and they don't read it... It's like talking a brick wall!

PIDD can play a big part with depression- get help if needed!  I literally have put on and lost almost 80 pounds in the last 2 years...  I eat when I'm sad...

About the Allergies,  I'm finally going to be tested later this month...

I can totally relate both to the article and to everyone's comments. I am a nurse and even my nursing friends/colleagues don't understand. The comment I get the most is "you sure are sick a lot!" and advice or the latest fad for what I could do to help. Doctor's don't even understand. I stopped trying to explain it a long time ago. I try to avoid the subject altogether!

This seems to work best to explain my CVID to well meaning strangers.

Me: Have you heard of the "Boy in a Bubble?"
Them: Yep.
Me: What I have is a lot like that, but not as severe. I can live in the world, but have to be much more careful of germs than you do.

Usually, that's enough to make them realize it's serious and  that any continuing questions will likely involve medical speak that will make their brain hurt.

Kris:  Tell you what girl, while your immune system may be giving you grief, your biting-edge sarcasm is in FINE FORM - nothing wrong there!  Keep fighting the good fight, and many thanks for all you do!

This is so great -- what we all think and never say.  

You are such a worry wart, kids just get sick.....so maybe he wont be an NBA player.

I'd like to say.  Yep, all of his 5 year old friends weigh 28 lbs...  and its normal to have the doc on your speed dial....ME WORRY????  We arent worried about the NBA, we wanna make to age 6!!

What we say: I really try not too worry; so how is Sallys cold?  Do you need me to bring in dinner???

I like how people have posted their complaints and the responses.  Good job, keep up the great work

Kris, excellent capture of the general ignorance of this largely unknown and misunderstood and misdiagnosed and very real and debilitating disease.

Those afflicted by this disease are often silent about their struggles and quietly succeed in spite of them.  Unsung heros, the difficulty factor for sufferer's lives is at the top of the scale.  

The longer I live the more I realize how much more there is to learn and why it is safer, and less harmful to those suffering to demonstrate my ignorance and offer unsolicited and unhelpful advice.

Instead, insightful inquiries about the disease and the challenge it creates for sufferers allows all of those who aren't afflicted to become educated and demonstrate genuine empathy.  Not out of pity or to be seen by others, but out of genuine interest and concern for the sufferer's welfare.  

It has inspired me over and over to see those I know who suffer from IG and related challenges not only strive and overcome, but excel in and out do non-sufferers in many areas, in spite of the pain and fatigue.  

I appreciate Kris and all she is doing to educate all of us and look forward to reading more and becoming more aware of how to help and support this community.

When I told someone today that I've been really sick for the last 6 months, and it's been a struggle, I was sweetly and kindly told, "I hope you get over it!" I told her, "I won't get over it, but I will get through it."

Great Blog and wonderful comments. I really like this new feature of the website! It's important for others to know that they aren't alone in their feelings, both their frustrations and their hopes!

The what we would like to says are great!  I think I have actually said a few of them come to think of it  

A number of years ago, my sister kept pestering me with all of these herbs, mineral supplements, etc. that I should use to cure my non existent immune system.  The coup de grace was my mom's funeral.  I finally said to her in the car on the way to the cemetary--"This is not the time or the place.  I do not ever want to have this discussion again."  And she has respected me all these years.

I too get the allergy bit.  I too don't have allergies and say "Yes, allergies are bad this year."  Coughing--I just say my lungs are acting up and let it go at that.


My favorites are the "You look great" and are you better yet?  My responses are: Thanks and for the better one--"working on it. How are you?"  Deflecting the endless questions and focusing it back on the asker usually sends them off on a monologue about their cold or hangnail and then I can zone out and try to be strong enough and have enough energy to make it through the conversation.

I am always looking for the nearest chair and if people want to know what i am really thinking, I would say "looking forward to my next nap" but of course I don't.  I also know where every bathroom in town is and use them all when out and about.  This is the one I find it hardest to bear the snide remarks about...any ideas.  

I have heard so many of these comments and questions about my beautiful two grandsons from some family members.  Sometimes our little grandsons simply do not feel well but they are so brave and keep moving forward.  One is quiet and the other one more out going. Maybe one day one feels good and the other one doesn't.  It just adds more stress to the situation because they do not educate themselves and suggest this or that but the last suggestion of  anti depressants was over the top.  God Bless you and your staff (do you have a staff, ha) for all you do and this foundation and education us.  Jo Cusick (Num Num)

I thank God for this site, blog & community!!  I experience these types of questions so much to the point that I'm an expert on the deflecting questions or having rehearsed generic responses for these types of situations.  Sometimes I just don't even want to be around folks that are always asking these questions (especially the exercise one).  I know they don't mean any harm but it's just dog on annoying.  

When I read all the questions well meaning people ask and reader comments I just laughed.  It gave me a good chuckle and let me know I'm not alone and it's just not me.  Thanks guys...I'm not feeling good today either, so this was great!

I love the comments! I have CIDP and I've heard these everyday for almost 10 years now from doctor's, friends, and especially family. Their answer to all my problems: the wheelchair, the severe fatigue, the weekly IVIg treatments, all the medications I have to take, the loss of feeling in my whole body, the loss of all reflex's, etc. is due to the fact that I don't have a job. So they've found the cure for CIDP, GET A JOB! Better yet, because IVIg started to work and I began to walk after six years in the wheelchair,depending upon others and social services to help me, my neurologist saw me walk into his office for the first time in all those years (this is after confirmation from three neurologists of the diagnosis), said that there's no way that I could be walking again since he'd seen me last (eight months previous) and immediately ceased my treatments, my pain medications, and was going to take all my other medications away because I certainly had to be faking all the EEG's, the Nerve Conduction studies, his tests, etc. I had to threaten to sue to stop him from taking the last of my medications away from me. After that it took over a year of finding a competent Dr. and another year of pain because no one would prescribe pain medication because they believed the last doctor before I got back on the IVIg, pain meds and back into a remission of sorts. Now Insurance doesn't want to pay for most medications anymore, doctors don't want to see you because all I have is Medicare, I'm walking fairly well again and people say I look just fine and how come I don't have a job and exercise more because that's the real problem? No wonder people get depressed. Have a nice day everyone in my place, and for those who are not, keep coming up with those cures. One might just work yet!

You're playing my song....

I can't begin to count the number of people who tell me I look fine. In my mind I'm thinking "Oh really?" Guess they haven't seen me on the days when I can barely get out of bed due to pain and fatigue or when medication side effects necessitate staying near the bathroom. Oh wait, they don't see me on those days, because I'm unable to get out and about for them to actually see me.

I've also been asked about the prayer thing, if I'd ever gone to a healing service. Yes, I have, and no, nothing happened. Thanks for asking.

I've been told that drinking coconut juice will fix me right up. And I've been told about going to a chiropractor (Getting my spine in alignment will cure my immune deficiency? This I have got to see.) Of course, there are those who have what I term "magic elixirs" that cost a fortune and are really no better than eating healthy.

The depression thing? Going back to work will alleviate the depression and I'll feel absolutely marvelous, not to mention give me an income where I have enough money for more than just my needs. Gee, never thought about that. Guess I should try it - only I'm not sure anyone would hire me given the number of days out of the month I'd be absent getting an IVIG treatment or off to see one of my many specialists, not to mention the days when I can barely get out of bed. Of course I'd like to have a little money left over at the end of the month. Do you think I really like spending hundreds of dollars for medications above and beyond what the provincial government will cover? (Trust me, Universal health care is not all it's cracked up to be.)

And then, of course, there are the specialists who don't know much about PIDD and tell me that I need to get active. The exercise and interaction with other people will make me feel so much better. Aauuggghhh! It's really a huge pain when I have to educate my doctors.

I would so love to have all of these people spend a month or so in my shoes, and then see what they would have to say....

This is great. I receive the IG living on line today while I was getting my IVIG. I was reading it and crying....
This is such an isolated disease, the first time I meet other people living with PIDD was at the conference in Saint Louis. And now this blessing to be able to share feelings, with other people that are suffering the same symptoms, side effectes, headaches, bathroom stops, pain, and "not so smart" questions.
I cry today because I felt supported, by people that I never met, the people around me, my family, friends, my partner are very supportive, but most of them don't understand how we feel and our fight to have a normal life.
Thank you

This blog is a great thing!!!!  I have MMN and to be able to connect with others who have a form of neuropathy and "are okayed" to deal with IVIG infusions is a good thing.  "Life" ran me ragged this spring and it took me a month to recover my energy.  I was starting to really get panicky that the MMN was acting up bigtime and two days ago my energy seemed to re-emerge!!!  I was able to work in my garden and I truly cared how it looked.  What a gift!...

You know that saying "if I had a nickle for every time...." That pretty much sums it up!!!  And, Connie, OMG...the "but you LOOK so good" comments are enough to make me scream sometimes.  I'm thrilled I look okay, I actually TRY to.  My son, who is now 19, probably summed it up the best when he was in kindergarten and his teacher gave me those questioning eyes... "My mommy has an invisible disease, it's on the inside so only Superman can see it!"  (out of the mouths of babes...)

One thing I'm finding mildly annoying, but it's really not anyone's fault is, "You look GREAT!" My head is pounding, my infusion site is itching, my fractured rib is throbbing, I'm exhausted, and I look great. I wonder how I look when I really am great (I forget how that feels, though)?

I think one of the best ones I've had so far was about a month before the holidays and a friend asked me what my plans were. When I replied that I didn't know if I would see my extended family because I needed to make sure no one was sick first my friend replied, "Really? You can't go even if someone just has a little cold?".

I have also had well-meaning people tell me all about the immune boosting "supplements", so I especially appreciated what you'd like to say in response to that one. :o)

I have CVID diagnosed about 2 years ago.  I think mine is the reult of Prednison use for a long period of time.  I am asthmatic.  I  am an RN  who worked in a hospital that every time they stripped, cleaned and waxed the floors through me into respitory distress.  That is when all my problems started. I also have had fibromyalgia for many years and I don't know if that accompanies it.  I do the Subcu therapy weekly.  There are times I just want to stop the treatment all together.  I feel bad about feeling this way because so many of the comments I have read sound like people are far more sick than I am.  I really haven't had the sickness that som many of you have had, just all the asthma attacks. Now I don't even know what my asthma triggers are.  But I understand how you feel when you get "your sick again" or the looks like you look fine, must be just wanting attention or a hypochondriac.  This is the first time I have talked about CVID.  My family can't look at me when I have the needles in my leg, they go to other rooms in the house until I am finished with the treatment.  It is very easy to get depressed. And I won't even get started on insurance coverage.  Thanks for letting me vent.  

Wow, what a great place to be able to come and talk about our experiences. I am very lucky in that my sister has CVID as well as I do, so at least we can commiserate with each other about the needles, etc. My family is very supportive and understand the disease which is another good thing. My husband is a wonderfully supportive spouse for me. He is never bothered by all my naps or things I cannot get done, places I cannot go. I just hate the feeling of always feeling completely drained.

Kris McFalls writes an insightful and humorous story for a subject that really has no humor unless the affected person choses to use humor. I have known a couple of young men that suffer from this disease and they have gone through more than I would like to remember. They have done this with grace and dignity.
I think the article is great on two counts. First, it says what all sufferer would REALLY like to say; plus it opens the door for others to share what they have had to use humor for when they are asked stupid questions. Guess it isn't just the sports commentators or people at funerals. I hope that everyone will take the opportunity ed to share your feelings...it can only help.

Like they say if you don't laugh you'll just cry.  I learned a long time ago that there are people who are interested and want to be educated and those that enjoy living in the dark ages.  Information is the key to our peace of mind and our sanity.  It allows us to take what control we can over a situation we have no control over.  It makes life bearable and on many occasions a way to make it from one day to the next.

Hilarious!  Everything you said is so true.

Kris,

You really hit the nail on the head with those comments!  So funny!  We've all been there & I now have the better to laugh than cry attitude!  Keeps me from going crazy!  

As far as the "you don't look sick" comment....there is a fantastic website called  www.butyoudontlooksick.com about dealing with chronic illness.  The "Spoon Theory" describes exactly how most of us feel every day.  I have printed it out for my family & friends to read & it has really helped them to "get it".  My best friend often asks me now, "how many spoons" I have when I talk to her.  
www.butyoudontlooksick.com/.../  

I had 1 friend tell me that if I just squirted betadine up my nose it would solve all my sinus problems.  Oh, really?  5 sinus surgeries & countless antibiotics (both oral & IV) & Vivaglobin now for 2 yrs after fighting my insurance for 2yrs before that (remember that Kris???) And I could have been cured if only I had heard about the betadine cure sooner!  

The 1rst ENT I ever went to told me my whole problem was that I was just depressed!  Heck yeah I was depressed but that was because I felt like crap all the time, had excruciating sinus pressure & infections,  had doc appts & tests out the wazoo all while working full time as a brand new RN with 3 kids & a hubby at home!  I argued with him & then (this is the insane part), he told me I needed antidepressants & to not worry about them making me "stoned".  "Look at me", he said.  "I take them & I'm not stoned!"  OMG!  I was thinking, well, now that you mention it buddy, I'm not so sure you are NOT!  I could not get out of their fast enough & never went back!!!

These are the stories I can laugh about now.  I have others that arent so funny tho, like having coworkers & boss treat you like a faker 'cause you miss more work than anyone else.  Listening to their comments about how they are never sick or tough it out & come to work anyway.  They don't get it.  You would think the medical community would be more understanding but unfortunately I have not had that experience.  Thats why it helps me so much to talk to others with PIDD - that has been a life changing experience for me!

I am so fed up to HERE with the depressed/anxiety thing I keep reading in my doctors' reports.

Well of course I'm depressed and anxious. Among other things, I have to deal with this clueless PCP/[fill in the blank] who is not helping me feel better. And by the way, I am not so depressed I'm eating too much or too little; that aside from trying to sleep through pain, that I'm sleeping too much or not enough; or that I've lost interest in the things I love to do.

I'm depressed and anxious because I CAN'T do the things I love, I'm depressed and anxious because I'm so exhausted from being sick and in pain that I'm struggling to work and earn a living (like any form of disability payment is going to pay my bills - ha!), I'm depressed and anxious because if I don't work, I'm going to end up living in my car after I file for bankruptcy, I'm depressed and anxious because my husband left me because he was sick of my being sick and he found someone who wasn't sick all the time, and I'm depressed and anxious because the medical professionals I look to for help are uncaring idiots who only see that I'm depressed and anxious.

Argggg.

I'm incredibly fortunate to have a family doctor who cares, who takes me seriously, and who makes sure I get the specialists I need. Most of my specialists are excellent, some are even the tops in their field in Canada and sometimes even internationally. My family doctor listens to me, and if I feel the specialist isn't doing his job, he will refer me to someone else. I wouldn't trade him for anything...

Connie, you are so blessed!

Great blog.  I sure hope I haven't been toooo dense in my comments to family and friends over the years.  This kind of information is helpful to avoid such encounters.

Thanks Kris! I have forwarded this blog post on to all those well meaning friends and family members who I feel sure really just want to be supportive and helpful - I pray this is the case.

I love the comments I get that if I could just get Laurel (5 years with CVID) to eat her fruits and vegetables then she would not get sick all the time. Wow!? I say thanks and always ask how they successfully get their children to eat all their vegetables. What I want to say is - Really? So do you like to eat all your vegetables when you have a "snot-filled" nose and can't really taste anything or do you go to your comfort foods when you are sick?

Thanks Kris for being a champion for all of us living with PIDD!

I was diagnosed with CIDP in 1996 and have been receiving IVIG treatment
on/off since.  One home healthcare nurse administered my infusions for nearly two and a half years then left that company.  The nurse they sent thereafter for the next six months was much less desirable / not so good at doing 'the stick', always having to stick me twice or more and on one occasion a record six (6) times.  On that day I was totally traumatized.  I telephoned the nurse that had left this company to enquire what I needed to do to again retain her services.  The following month, she was back in my home under her new company along with a cost of meds and services (of exactly the same as before with absolutely no difference) except the cost from February to March had nearly trippled, and each month after that the cost followed suit.  At first, I thought the increased amount had to do with unnecessary equipment that the new company sent to my home, charging me a rental fee
when they actually knew I had no use for such equipment-then they retrieved that equipment after two months. (It had not even been removed from its original packing).  Nevertheless,  the nearly trippled
cost continued.  Is it reasonable that the cost has increased that much of late?  Or is the increase related to the move to the new company to get my old nurse back?

THANK YOU EVERYONE!! This is my first IG Blog and I will have a smile on my face for a few days because of your comments and insights.  I am not alone in dealing with all the stuff that goes with CVID.  My favorite helpful tip from my mother over the years is this one; "You need to open all the windows in your house and give it a good airing out. You need to get rid of the germs in the house."  

Thanks Kris, For this forum for our stories and experiences.  We've ALL been there, done that with all these stories and comments.  It's amazing that most of us still have a sense of humor and none of us has "gone postal!"  
     My personal favorite story relates to a woman who's spiritual orientation caused her to maintain that I "had asked for this."  This was just a couple of months after diagnosis and I was still so wretchedly ill that getting dressed and leaving the house briefly was overwhelmingly exhausting. That was in her favor however, because in my mind I desperately wanted to beat her senseless...on the other hand, that would have been redundant, would it not?
    We laugh so we can cope with these hidden diseases and not lose ourselves to them.

I can't begin to say "right on Kris"! I have had to explain this illness soooo many times to my boss who apparently had a brainectomy along the way.  But you are out so much yada yada yada
I was having trouble with my port and talked to my immunologist that we should have it taken out but the window of opportunity was somewher in the week of the last infusion.  So my infusion is Monday  Well I immediately went to the surgeon the day that would be Tuesday after my infusion talked about it and he said he would schedule it within the week. (Nice guy - looks like Austin Powers - hmmm).  I immediately called my stupidvisor again if you are keeping track is still Tuesday and told her I don't know when he can schedule it but as soon as I know I'll let you know.  Well I called on the surgeon on Wednesday and he said he could do it on Friday but I had to quickly go get pre op labs done.  So I rushed into my stupidvisors office and said surgery is friday - I have to go get bloodwork done and this leads to my all time favorite  You can't have your surgery because we all have a vacation day.  So as my blood was boiling over I said why let your whole staff go on vacation day.  No answer needed or given.  2nd question do you know how difficult it is to schedule a vascular surgeon's time AND the ORs at the hospital on a rush basis? She took my pre-op papers and said this is mine.  I tore it out of her hand and said oh no due to HIPPA regulations this is not for your eyes.  She was severly reprimanded the next day and the dance continues with yet other issues.  

I have been out 2 weeks since last infusions due to headaches (someone didn't calculate the infusion time properly and thought we were going for an olympic record)  I used to have 2 infusions per mo at 10 hrs each.  We changed DRs and brand and now have it to 6 hrs once a month.  Ms Nursypants did it in 3 hrs.  

Then a new thing - I kept getting severe nosebleeds.  Didn't worry about the first one - thought it was the headache.  But the one I had the one day I went to work - I lost a sinkful of blood once we got to the sink I Let me tell you Mrs Stupidvisor almost fainted. (she has kids)  So before the paramedics showed up I said to her see when something goes wrong it really goes wrong kind of the way it is with my other issues.  So got to ride in an ambulance not once but twice more the next day.  I have been out of work since.  And now its infected.

If you don't already have it - keep a piece of paper with all your meds and surgeries and stuff including a brief description of what CVID is.  It was really hard trying to answer these things with a towel stuffed around my neck and tissues being shoved at me and throwing the last set on the floor AND trying to pinch my nose.  At one point I said hey I can't breathe and they panicked and thought I was having a heart attack but I said no the towel is actually in my mouth.  The paramedics were actually very nice I could tell the guy was trying his best but well.  Then I yelled at him - No sirens, no IV no morphine - what kind of EMT are you?  He said the kind that hands out tissues.  

Oh and the 2nd set of paramedics wouldn't touch me because when I tried to explain the CVID through the boody towel they said oh you have AIDS.

One more hint.  I have read many of us do have depression (who wouldn't with all this kidding) but when I'm not at work I don't take my pills.  So after some very tough days (I live alone) my mother said do you have groceries?  Being in my almost golden years and overweight I said you have seen me do you think I would miss the chance on having food in the house?  Not nice of me.  So we hung up and I cried for an hour.  Not good because I can't blow my nose.  So I called and apoligized and all is good but note to self take depression meds even when you don't think you are depressed.  You would think we would learn since we all have medical degrees......

Therefore, when I can get up in the morning whether it is rolling out of bed or just waking up on the couch because I fell asleep there - its a GOOD DAY!!!!  

Great comments

My three favorite diagnoses from MD's are:

1. You were divorced 10 years ago. Maybe this pain  is a delayed reaction.Age 33.
)Pain in pelvic area- pre cancer of cervix)
2. Take a vitamin.
(a hematologist I saw at age 27 when bronchitis was becoming chronic.
3. Get a hobby.

I was finally diagnosed by an Ent after failed sinus surgery at age 57.
My former PCP.

When I was young I was always sick in out of hospitals..i was told i had an immune problem...so like all of you im sure you had problems wiht work/school..i just went to docs and got anitbotics orally/and or Iv. and just been dealing with it. I recently had my immune system tested again because Ive been frequently annoying my docotor with more than normal for me sinus/bronchitis infections..(shes great and isnt annoyed, but i always feel that way) Anyway, my levels came back low and she sent me to a hemotologist...and my first appt. i brought my labs and anything that has recently related to my problem. The docotor came in and he asked me what i was seeing him for, I told him...and then he says to me "You don't look Sick"...I just froze and all i could even think to say was "Thank you?"...That threw me a little..and then he asked me some questions like you dont get sick alot?..im like yeah i get frequent sinus/bronchitis infections...and hes like "really"
Mind you this is even before he looks at any of my lab results...Im not sure if he was trying to be rude or what but thats what i got off him and hes known to be a great doc. Some how we got around to talking about my mono infection i had and my lymp node that got swollen..he said he really needed to see the lab report about it...and i said i brought it and the nure put it right in my chart..(which he had in his hand)..I said this like three times befor he even looked for it. Any of you had any experience like this??? I just dont know what to think about it.

Rosie
Thisis all so true!
You need to see an immunologist not a hematologist.
Are you on IVIG or subQ?

IMHO, it would be a really good idea to get info from the IG Living folks or the IDF or Jeffrey Modell people to help you find a top immunologist in your general area.  Once you have been properly diagnosed amd a treatment plan is in place you might choose to see a different doc for run of the mill issues but one who will work with the specialist's plan of treatment and one who is willing to interface with the specialist as well.  Wish you the best, keep us up on how things are going for you.  (PS: Last doc I saw told me I "looked pretty good". I replied, "Thanks, but when I'm well I don't have dark circles and bags under my eyes nor a red nose either.  I also have some color to my skin (and don't look like a cadaver.)

When first dx, has anyone ever had a family member purposely visit while ill and "forget" to tell you.  My youngest son's wife failed to advise me that the baby was ill when I attended a birthday party at their house.  Of course, I was holding, kissing and cuddling the little guy and, yep, was sick for the following two weeks.  I really think that she thinks I'm making it all up.  Any suggestions?  She and I aren't close, it's always all about her family and my son goes along with her.  I'm about ready to just "write them off," but I love those g'babies.

I love this blog, I have almost wanted to take a few people out including doctors. recently a visit to the ent reminded me of all the 25 years that it took to get a diagnosis... I have been having a problem with one of my ears, constant fluid over the last several months that other physicians have noticed but was not infected, so not treated. However, last week wound up with a severe earache that was on the 10 scale totally killing me, went to primary they put me on prednisone along with antibiotic because the ear is infected,,, followed up with the ent several days later he said I don't believe it unless I see it myself, your ear looks fine......HELLO!!!!!!could be that I have been on antibiotics for a week!!!!!

I am now going to take my own advice that I give to my group members and anyone who asks,,,, I am finding a new ENT....

oh and by the way, he said before he left the room, you look really great and healthy.

I do love the responses that you have come up with though, the prednisone just may make those statements pop right out of my mouth

Late to the party I know...but I just got my IG Living Magazine in the mail and read about this blog, and had to put it my 2 cents...

A little background: I was diagnosed with CVID when I was 5, started IVIG when I was 14 (one of the 1st) and am now 41, so I have been dealing with this a long, long time. I've been fortunate that I have always had good doctors, amazing and supportive parents and friends, and a wonderful husband (no kids.) I am in pretty good shape, considering all the years I have been dealing with CVID. I have asthma due to repeated lung infections, mild hearing loss due to multiple ear infections, and sinuses that predict the weather (though fortunately I have never had to have sinus surgery.) But I am still able to work a full-time job and lead a reasonably "normal" life as long as it doesn't disrupt my infusion schedule.

My parents regularly waged war with schools and insurance companies when I was growing up; now I fight the insurance wars and have had so many issues with employers that basically I choose to stay "in the closet" (so to speak) in the workplace. I know that I am very, very fortunate, but that doesn't mean I haven't had some very dark days.

I have heard all of the above comments and more. My grandmother told my parents that the reason I was sick all the time was because I was "too spoiled" and they just needed to let me "play in the dirt" so I would "get tough." One of my aunts tried several times to take me to a faith healer. I went through adolesence when AIDS came into the public eye, and many of my classmates and even some of my teachers thought I had AIDS (not a good thing in a small town dominated by rednecks, believe me.) I have encountered the AIDS thing as an adult as well; it seems to be the first thing that pops into people's heads when you tell them you have an immune system disorder. I have also had people tell me I need to try vitamins/accupuncture/a vegetarian diet/a gluten-free diet/a macrobiotic diet/yoga/tai chi/meditation/prayer/bible study/more exercise/less exercise/smoking pot (seriously!!!)/stop smoking pot, drinking, doing drugs/etc...you name it. (And I do not drink or do drugs of any kind...except the ones prescribed to me. Never have.)

I've also seen sort of another side of the "you don't look sick" attitude. When I do let people in and let them know about my CVID, I get a lot of compliments on how "strong" I am and how "well" I handle it and what an "inspiration" I am, and I almost hate that more than the "but you don't look sick!" thing. Because like I said, I've had some very dark days. No doubt the whole "maybe your immune system is weak because you're depressed" thing is BS, but I think there is a real issue with chronic illness and mental health. I have had two major bouts of depression that required medication and therapy. I am "stable" now, but it's another condition that requires constant maintainence. I still have to keep some klonopin in the house for the occasional panic attack. My internist, who cares for people with a variety of chronic illnesses, thinks mental health counseling should be mandatory for the chronically ill, because almost every chronically ill patient he has goes through a depressive episode at some point. As much as none of us like to be pitied or patronized, being told how strong you are and/or that you need to "stop whining and be greatful for what you have" is just as bad. I don't want to be strong all the time. Sometimes I just want someone to hold me and let me cry. (My hubby is great at this, fortunately.)

As much as I wish I could make a snappy...ok, rude...comment everytime someone says one of "those things" I usually just smile, make polite small talk, and move on. One thing that has been very helpful to me was something that one of my therapists suggested: get a notebook and write letters to all those people who make you angry and do you wrong. Don't hold back. Tell them everything, don't mince words. Drop those swear words as often as you need to. Mailing these, of course, is not a great idea. But just the act of writing them can be amazingly cathartic. (Some people recommend burning them as well.)

Anyway, I've gone on waaaaay too long, but just wanted to share my thoughts. Thank you all.

If I've tried different natural products to help build up my immunse system.  I usually smile say thank you and change the subject.  If that doesn't work and I"m feeling a bit freasky I say, "I'd have to have an immune system for anything to work."  If the person is just being a pain about it I just walk away.It all depends on the day that I've had on what I say. The other thing I love is, "you do look you have anything wrong with you".

I enjoyed reading all the comments that everybody shared. The other day I came upon an article in an Oprah magazine I was reading while I was waiting for an ultrasound. It has helped me the last two months tremendously. I hope it helps
someone else, too.
      It was titled "Martha Beck's 5 Rules for Lasting Joy."
        1. Honesty is the best policy .
        2 . Give up on toxic people.
        3.  Let it go
        4 . Trust your gut.
        5. You are more powerful than you know.

      I hope this helpful ! I used it the other day when I really felt like punching my PCP in the face after she rolled her eyes at me ! Lol of course, she is no longer my doctor. Hang in there everyone.

What they say: "But you have energy for this, so you should have energy for that."  

What I want to say: "Oh, really? Thanks for letting me know. I'll get right on living life like everyone else, instead of laying here in a stupor of weak muscles and mental fog. Found that extra energy right here on my bedside table!"

What I really say: "I'll push through to my detriment again so you don't have to do without."

I get all sorts of comments from all sorts of people. However I feel free to be sarcastic, sorts the wheat from the chaff in my book. As if a person cant handle sarcasm, they sure cant handle being friends with a chronically ill person!!!
I also use the Bubble Boy to educate people on what type of disease I have. And point out he was born without and science helped him. I was born with a low one till my immune system simply stopped making T and B cells. None. And that science helps me live as well.
That I have to be very careful of germs and I refuse to shake hands because of it. I also let people know we live by chemo protocols, and please respect our wish for me to remain healthy and not have to run to the ER a couple hous after ya come over while sick. Unfortunately, have had nurse friends not understand or respect that.
That was when I got really proactive about telling people, even strangers about it. So I wouldn't have to play the PI version of Russian Roulette and shaking hands. Or having people come over.
All my Zebra and Unicorn people, you are fantastic and keep on doing whatever makes YOU happy!!!! Whatever that is!!!