Easier To Move A Mountain Than To Clean A House

General
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Okay so maybe it is not easier to move a mountian than to clean a house and maybe I just am oversensitive and overwhelmed but today I feel like my own family and friends might actually cause my death long before PsA or the medications I take for it ever could.

There is no check list that I have found or set guidelines that I know of that say this person is on immunosupressant drugs for PsA and so the following things need to be done to keep them from catching every darn bug and flu you germy people are carrying on your person into their home and leaving all over their house!

I am a mom of 5 and I have never and I mean this NEVER EVER sent my kids to anyones home sick and when I know someone is going to be coming over for a visit I ALWAYS warn them via phone email text whatever way possible if someone here is sick. To me this is a normal rational way of behaving and I am upset when other people are offended by me asking them to please not come over if they are sick. I actually have been yelled at for not exposing my children to enough germs, my kids play in the mud and rain and outdoors but I apparently am not a good mother according to my MIL unless I allow them to play with children who have a cold flu or sniffle so they can buld up their immune system young (balderdash). When our premature baby was born we were given loads of warnings for the hospital and even told when released from the hospital to try to limit contact for 2 weeks and allow for her to adjust to her new home and siblings in peace before inviting the rest of our family and friends over to meet our new arrival so you can imagine my surprise when MIL arrived at the neonatal unit expecting to hold her grandbaby who at the time was not even allowed any physical contact (sigh)

Anyway I digress I have always lived by these rules even before having children of my own because I grew up with a little sister who had Cystic Fibrosis and I carry the gene for it. I have always been a sickly person any cold, flu or bug to be had I would most definately catch spread to my entire family and then catch again and thus my nickname as a child was typhoid mary (thanks mom). When I would get sick my parents would make me stay in my room and would make my sister whom I shared the room with sleep elsewhere because the simplest of colds would turn into a month of symptoms get everyone else sick and then get it once more as a secondary infection for good measure before getting over it.

Even the weakest of all medications that may possibly have a 1 in a million chance of weakening your immune system ends in me being sick all the time not just a little bit but majorly. I am talking lung infections to the point of hospitalization stomach flu to the point of hospitalization or weird infections like lock jaw where not only did I have to be hospitalized but I also had to be fed via a tube down my nose just to get nourishment into my body.

Now having explained all of this my question is why are there no guildelines for home cleanliness and personal hygiene for guests who visit people who have not only a compromised immune system and take immunosuppressant drugs but specifically those who suffer from Psoriasis or Psoriatic Arthritis?

Where is the common sense in people that says you just coughed, sneeze, spilled egg (insert bacteria here) on the counter wiping it with a dry towel is not okay! You are only rubbing it into the counter and the next moist object to touch that spot will most definately pick up that bacteria pass it around to the toddlers and the teenagers and not only will your whole family get sick but since my children go to 4 seperate schools you have now put the entire town at risk of "another Hillebrandt plague!" Yes this is how our town knows us... we are the sick people ... the pediatrician said we actually threw off the stadistic for the small village we live in when all of our kids came down with scarlet fever at once and that triggered a call from bigger health officials wondering why so many cases in such a short time had occurred in this area (not a proud moment I can assure you). Nonetheless we keep a clean home and children who are exposed to normal life conditions who would most likely not get sick very often if everyone else would stop sending their sick kids to our house to play with promises of its only an allergy ...3 kids with fevers later oh whoops sorry but better they build up those immune systems now right?

Anyway does anyone know of any guidelines for how to protect against germs and bacteria for the compromised immune systems of people with PsA or complications from PsA?

Are there guildelines for immunesuppression therapy treatments in general for cleaning and protecting against germs and bacteria? If not are there guidelines for each individual medication?

How have things changed for you guys?

Do you have your own rules for cleanliness in your home because of your medications or your PsA in general?

Do you have rules for your family and friends who visit?

Has your doctor ever put limitations on where you can and can not go due to the medications you take? Mine suggested I not be the one to take my children to the pediatrician. He also suggested I avoid school and church functions and whenever I can not aviod them to at leat wear a mask. Am I the only one whos doctor sets such high standards?

Feeling like no one will ever understand my situation and I am sick of being sick with things that could have been avoided because everytime I get an infectious type of illness I end up having to stop the medications that control my disease which sends me into a flare and what hubby and I refer to as the circle of suck =/ as a joke on the circle of life (lion king).

Please I really need advice, tips, help, and if possible websites or books or medical journals or heck any such place where guidelines exist other than in my head as so many people are suggesting.

Also I am American and live in Germany I am fluent in German but find it a thousand times harder to express my concerns in German especially with no other material type evidence to back up my claims except the words of my doctors and specialists who are according to a certain someone (MIL) all quacks anyway.

Thanks a ton in advance and sorry this post is so long and that I ramble in circles. This has been a really hard year for me and I am feeling like I am the only one who actually cares about my health. I know my family cares but they are also to afraid to stand up and say no your runny nose can not come in.... my teenagers and even my husband say they feel bad turning people away because we have no real valid proof except the warnings from my doctors who apparently have no actual printed material on the subject for PsA but do have tons of literature for the same medications (exact same treatment in fact) for patients with cancer which when shown to others leads to them saying but you do not have cancer and thus having all of my wishes ignored.

2

My rheumy has NEVER told me any of those things other then take the usual precautions. So sorry you are having so many troubles. Have you considered a second opinion? Best of luck ..........HUGS

3

http://en.wikipedia.org/wiki/Immunosuppression

http://en.wikipedia.org/wiki/Susceptible_individual

I understand your concerns.

As far as keeping house, I have a lady come in and vacuum and scrub my floors every week, makes it easier for me to take care of the other things as pushing a vaccum, broom or mop, that are so hard on me.

I use alot of Clorox and Lysol wipes for things but always have sick grandkids in and out, so never get all of the germs!

Sorry that you are so suseptible to all of these germs! I suppose I may be in time too, but want those kids near me!

I hope you can work with your Dr and find a happy solution. In the meantime, try google in German for the above topics, you may just come up with what you need!

Wishing you well,

SK

4

I have had a few second opinions and they all sing the same song, a cross between the medications and my now damaged kidney and liver issues has brought an onslaught of concern from the internist, rheumy, dermy, and ortho so much so that my internist does all my regular care and writes all my meds with of course the orders coming from the rest of the specialists, but to ensure no one gives me anything that could do more damage than has already been done. My immune system can not fight off anything anymore and it is getting old always being sick with a cold or flu or stomach virus on top of everything else and there to not getting any respect from the people who bring the germs into the house. Its got me frustrated and overwhelmed and really on the verge of tears I just can not handle anymore. My MIL has arthritis and has had surgery on her hands and knees but has managed to have no flares since the initial onslaught that did the damage requiring those surgeries which were common then and are in fact no longer done now because they never actually helped but anyway she is a source of discontent for me to an extreme. She visitied (from the US to here Germany for 22 long days) summer 2011 arrived with strep and I got sick then the toddlers then the teens then my husband and then me again while we were sick she went on a trip from here on a spur of the moment trip to north Germany where there was an outbreak of EHEC which ended in over three thousand of people being ill and around 50 people having died. She was in the city where it started from tainted food and was angry when she returned and we asked for her to wait 2 days before revisiting us, 3 days being the time we were told by doctors to wait because the infection time with that strain was slow to show itself, thousands of people were so sick they had to be put on dialysis and we at the time had children ages 15, 14, 12, 2, and 1 and were concerned for their safety. In the end all was well and the visit went on. This summer she returned mind you these visits are uninvited and she stays with my husbands family ....her ex husbands family to be more clean and causes a lot of disruption for everyone especially my husband but we do our best to get through because she is in her 60s and both her children fled to Europe upon reaching adulthood (to escape her) and she doesnt have any pets or any other family back in the US who will have anything to do with her. I as a mom have a soft heart for how awful that must feel for her and so she comes and we smile and we get through until she flips out which happens every summer. This year she came with a norovirus and literally infected us all she herself ended up in the hospital after arriving here in germany and told the doctors she had not been feeling well on the flight the day before she came to our home which now has hubby and myself and our kids 16, 15, 13, 3 and 2 our oldest 3 faired faily well aside from battling one another for entry to the toilet but our youngest 2 ended up in the hospital where they were accidentially misdiagnosed with rotavirus and thus put in the wrong quarantned area and hence caught rota virus on top of norovirus and were very very sick our 3 year old for 8 days our littest for 10 as she was a preemie things hit her harder it seems not only that but our kids also infected others in the quarantine which if you can imagine was an awful all around experience. My MIL was not sorry she actually said i did not pay thousands to fly here to see my son only to have to stay away because you are all germaphobes. And so the story goes that she comes without caution or care for how it affects us and we end up sick it has been very hard on me now hubby and I were highschool sweethearts now in our mid 30s youd think shed get used to be but thats another storey all together. She is not the only person to have such wanton disregauard for the health and safety of others however its actually become a common theme for sick friends to visit and literally lie about their symptoms as allergies or having eaten something bad and we all get sick. I can not understand this mentality and it makes me angry my PsA has landed me in a wheelchair able to walk only with use of 2 canes and then only very short distances, I have lost pretty much the ability to grow hair in the places i do not have PsA and in the places I do the hair that grows only causes the infected areas to become more extreme I have been in a constnt flare state for 2 years now with red angry swollen joints my right thumb and 3 toes on my left foot has become disfigured. I have reached a breaking point I can take no more pain no more stress and no more ignorant people who say things like well at least you don't have cancer or things could be worse, who then bring in sicknesses I can not fight off which take a toll on me and get my kids sick which means I push myself even harder because I am a mom first and froemost before I take care of me I take care of my family. I have been on Remicade, Humira, Enbrel, Cyclosporin, prednisolon, sulfasalazine, methotrexate, Ibuprofen, Tramadol, Zopiclon, Tilidin and an army of other mmixtures from NSAIDS to DMARDS to TNF Blockers and all for nothing but now the damaged organs I must be extra careful with and it seems no one else has ever had anything like my situation before anywhere and my doctors who do their best to protect me and keep me healthy can not do so simply because no one believes what they say is true because there isnt a printed anything that backs it up. I hate the stubborn stupidity that causes others to disreguard others from the moms who send their kids to play at my hosue with my kids knowing their child is contagious to the family who visits and think that their plane tickets cost was more important than the health of my family. The entire summer I struggled I put off going into the rheuma klinik so as to not be an inconvience to any of the family who visited and with every once of my strength I had I did my very best to get through the visit my husband was angry with the world for how I was being treated by his family and our friends and he tried to help as much as possible but even then it only made matters worse.One night my husband cut my steak which he did to be sweet to save my hands because the doctor told him to take over little things when possible (which makes me love and appreciate him all the more) but his mother begane rubbing her hands and talking about her arthritis and in the most condescending way said "but ohhh we ALL know you hurt more". This was said a thousand times over to the point that the last 3 days I sent the teenagers out with their friends to just be kids and to not have to sit and stare at their grandmother who by golly had no intrest in seeing them anyway but sure was not okay if they spent the summer having fun elsewhere I left hubby and the 2 littest with the visit of his mother on his own and hid in my room only to come out to cook or clean when necessary. I was miserable and sad and lonely and angry and all of those other things one is when ones treated unjustly. The visit ended and I thought I would have peace til next summer only it seems that because of the MIL disregarding my illness so had everyone else we know. No one called anymore before coming no one bothered to warn us they were sick and everyone took on the attitude that while i have PsA it can not be that bad. I woke up to a world of people who could care less about me or my family and I am angry. My doctors all say the same you are taking medications that are used to treat people with cancer you must be cautious you can not allow sick people into yuor home and you need to limit your activities outside the hosue. The have given us a hospital type dispenser for hand sanitizing told us to have people who come in remove their shoes and coats and wash their hands when they arrive, to allow no one in whos sick or had a fever within 48 hours, to avoid places germs are in large quantities like the pediatrician and school/church gatherings unless wearing a mask and/or gloves, the doctors are taking my very odd not in any of the rule books for PsA case very seriously so I have to wonder why isnt anyone else? and why am i even bothering asking this? why dont i just put my foot down (gently lol)? Why are my husband and I both so afraid of the stress others cause us if we do not let them visit rather than what can and does happen when we let them visit? Why do i put myself at risk? But mostly why the heck cant I find one darn case like mine anywhere in any of the literature for PsA? Why is there not a phamplet that says heres what PsA could look like if your doctors screw up and mix medicines that cause organ damage? Why arent there more warnings for the things that can go wrong when medications fail!!! Why didnt anyone stop this from happening, why is it me sitting here now trying to live out the rest of my life with pain meds and having to be careful not to damage anymore organs which means i cant take the normal mixtures that bring actual relief from this disease! There is no more maybe this will work and the flares will calm and I will get my mobility back there is no more hope for better days we are now left with hope for days where it doesnt get any worse and I am one very angry Mama right now. My situation doesnt fit in the playbook for PsA which is already an unfair awful disease to begin with but because no one can google whats going on with me because no one can read about my cases issues specifically what gives them the right to go on pretendng like it doesnt exist? How can people be given facts not only from myself or my husband but also from my doctors and hospital staff and the rhuema team and decided because they cant find those same facts word for word online then they cant possibly be true? Im sorry for this rant but I really needed to get this off my chest... I can not comprehend disreguard for others simply because it makes life more convenient .....

Liz said:

My rheumy has NEVER told me any of those things other then take the usual precautions. So sorry you are having so many troubles. Have you considered a second opinion? Best of luck ..........HUGS

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I know im coming off angry and bitter in my responses but to be clear its nothing to do with you guys i love this forum you all have been wonderful to me its just been a nightmare for me. I was diagnosed and being a book worm I did my reading I asked questions I felt informed ad ready to take on all the good and the bad. Then it all went wrong and now I am overwhelmed and underinformed and terrified that any more mistakes and I wont be here to rant about them. There is no much information no one tells you simply because they do not know your home dynamics or forget. My doctors never mentioned anything about not being around people who have been given oral polio vaccines they did tell me not to get any immunizations but not once did anyone anywhere say stay away from other people who have recently gotten an oral polio vaccine. For the most part oral polio vaccines have been stopped in many countries all over the world but on another note they are still used in many countries and in the unicef program no one could have known we would be sponsoring a child from a third world country no one could know that we would get to meet that child or that the child would get immunized right before arriving in Germany but that is what happened. Now I did not catch polio thank goodness for that but I could have. No one told me even that there was a chance for that to happen I fould out by chance when we met with the other children and hosts and someone said their husband could not attend because he was on methotrexate and the rsk of catching polio was very high considering the childred all received oral vaccinations before arriving. I did not panic okay I lie I did panic but inwardly I did however bring it up to my doctors the same week and have since been given the all is well- the doctors themselves actually had to look it up to see if my fears were even waranted and two of them seemed quite shocked to find that there was a very real threat and they had had until my very odd case no idea of. Maybe living in a small farming village is not such a bad thing when it comes to the lack of information because it also saves a lot of unneeded fear and worry. Then again had I not heard that conversation, asked my doctors about it, had they never been informed because they never needed to look up anything that strange maybe someone else down the line would suffer because of that lack of information Germany has many refugees from all over the world and maybe someone else would not have been so lucky- Knowledge is power its a scarey form of power because you can never know everything and sometimes its what you dont know that puts you at the most risk. here is a link to the mayo clinic webpage that explains why you must avoid being around anyone who has taken an oral polio vaccine recently if you are taking methotrexate

http://www.mayoclinic.com/health/drug-information/DR600919/DSECTION=precautions-

"While you are being treated with methotrexate, and after you stop treatment with it, do not have any immunizations (vaccinations) without your doctor's approval. Methotrexate may lower your body's resistance and there is a chance you might get the infection the immunization is meant to prevent. In addition, other persons living in your household should not take oral polio vaccine since there is a chance they could pass the polio virus on to you. Also, avoid other persons who have taken oral polio vaccine within the last several months. Do not get close to them, and do not stay in the same room with them for very long. If you cannot take these precautions, you should consider wearing a protective face mask that covers the nose and mouth."

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Fortunately for you, you are not taking it as chemo therapy (which the Mayo article is talking about) The dosage which is 1000X greater dose than that for PsA and have those worries....

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All my doctor told me is that I cannot live in a bubble. I have to say though that I do have your concerns and fears, I am a newly diagnosed person, but I have found this site to be a godsend to me for I have learned so much. Hang in there!

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Actually I was at the time taking it as chemotherapy ...which is part of that led to the ultimate fail with my organ issues. I was so misinformed 2 years ago when everything started to get complicated but i thought i was highly informed i thought my doctors knew what they were doing and the treatment plans were the right thing to do. I went inpatient for nearly 4 weeks back then when the doctor decded that long term chemo would be a sound plan but first we would do a trial run high dose intense chemotherapy which was meant to shock my system one round stay 2 weeks another round same intensity and 2 more weeks in and if we see improvement then we would do it as outpaitent through the hospital at of course lower doses until we found a good balance ....I had a port put in after my second round to make the outpatient treatment possible and went in once every 2 weeks for 10 hours to be monitored before during and after treatment via IV ..... The fact is though the risk is for anyone taking Methotrexate especially while on Biologics.

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My insurance specified that I had to start with the least expensive treatment, so my first drug was Sulfasalazine, no help, just a stomach ulcer. On to the next on the list, good ole' Methotrexate. After about 3 months, woke up with blisters all through the inside and outiside of my mouth. Went to my Internist he said, "What in the hell are you doing on a Chemo drug when you have Arthritis, you should be on Enbrel" Week later Rheum tells me the blisters were from the MX, so on to Enbrel.

Will be evaluated end of Jan, if not significantly better, it's on to Humira.

Costochondritis was added to my long list, and for the second time I was told that I have had this for a LONG TIME.

He swears it is a genetic disease, so that means it was in the DNA at conception. WE have been screwed since birth! All it took was a stressor for it to BLOOM!

MamaMeli, I don't know how you are going to control people in and out with a MIL and five kids. Best of luck, it's a tough one! I feel for you!

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Maybe I should post this just to be clear. What happened to me is not common and is not a valid fear for every person being treated for PsA. I had to put it as best as I can a backwards progression meaning I had the arthritis issues which went misdiagnosed but treated to an extent due to the fact that I had never had any skin issues ever at least not until we had our 5th and last baby when Psoriasis finally showed itself.

We had our daughter and I lost a large amount of hair which can be normal after child birth but even more so after a traumatic bodily even which was her birth an emergency c-section sterilization and repairing of damage caused from a pervious emergency c section due to a car accident. 13 years ago our son was born at 28 weeks because we were hit by a drunk driver and my water broke now he is fine a totally normal (if teenagers can be considered normal) healthy child but soon after his birth we lost a daughter our first little girl because of the damages that the car accident and sons subsequent birth emergency c section. We were told because of said damage we could have no more children which hit us very hard we had 3 wonderfully adorable sons but lost our only baby girl and time went on. Out of no where after 7 years of no femine cycles I was in my doctors office because I had been feeling sick and we fould out we were expecting after many fears we had our 4th son and 18 months later our 5th and last child our princess who because of a whole mess of issues was born 8 weeks early via emergency c section in which i was asleep for the first time I missed the birth of my baby apparently i had bits inside that had attached themselves to the scar tissue from the car accident and previous birth which created a risk for a normal delivery and so on. Long story just getting longer but if you can imagine anything that could go wrong health wise and throw it all together that would be my story.

As you can see my issues are complicated and probably do not make any sense now thats its nearly two am but I am doing my best. Anyway massive hair loss and then where it fell out on my scalp appeared the Psoriasis. Before the Psoriasis showed up I was being treated by Orthopedic doctors who were having a hard time understanding why I has issues with arthritis like swelling but tested negative for rheuma factors on top of that I have massive loss of muscle connectivity and near constant tendonitis so much so I had to have my left hand operated on back in 2005. My toes seemed to show similarities to bones which have died but three phase bone scans showed active circulation which contradicted the bone death assumption.

Added to kidney damage I had from a kidney/bladder infection when I was a teenager that had gone untreated until I came down with a near 104 fever and my mom rushed me to a hospital. You see my case is a mix of other issues causing treatment to be very complicated added to the fact that I had been misdiagnosed and mismanaged for nearly 12 years now that we have been in Germany. The doctor who initiated the over the top therapy really had a firm belief that his plan would stop the progression. He switched my medications including the biologics many times before some of them even had a chance to firmly take hold at once point in a matter of 9 days i went from methrotrexate prednisolon cyclosporin to humira methotrexate sulfasalazine.

Through my life there have been many medical issues that have caused a lot of things to go extremely wrong my frustration is there is no text book that lists if this went wrong then this can go wrong and so on. To sum it all up most people with PsA have enough issues worries and fears which are all very real and I do not mean to knock the disease or treatments at all this disease is wicked and evil and cruel and makes no apologies, but for my case its a mass of the disease added onto other issues added onto misdiagnosis and overzelous doctors which ended in a terribly complicated mess that has become my life. Explaining it all sounds like some sort of crazy story people would see in a movie and half of it doesnt make sense unless you actually have known me since childhood where you could have witnessed the mass failings of my health and my health care. No one can actually understand it all it overwhelms even me and if I cant grasp it than I know I cant expect anyone else to but i wish sometimes that people took what my doctors specialits husband and I tell them and made the choice to call and say " hey I am sorry but I have strep throat so I am gonna stay home instead of visit but as soon as I am well again we can make it up" intead of dragging in their whatever bug they have and infecting me and my family. I am angry that I cant just say here read about it on this page or in this book or in this phamplett and just respect the disease, medications, or hell my family just cause there is a lot of us and getting us all sick is just down right rude.

Most people with PsA will never live through the events I am living through but nonetheless will have their own set of why doesnt this happen to anyone else, from anything to medications that do not work to complications from other diseases and I so not mean to play the oh woe is Meli fiddle because I know darn good and well we are all struggling and all fighting to find a sense of normalcy in the chaos that is life with PsA.

But just for today take pity on a mom of 5 who has a throat that feels like she ate a glass cactus who is up after 2am because apparently the toddlers also have eaten glass cactuses and are miserable and are waking one another up in tandem and also one has wee'd the bed which meant mommy had to carry heavy lumpy sleeping child to the couch go and strip and redress his bed and then replace heavy lumpy sleeping child while trying to ignore her 3 teenagers who have already started the "i hink im dying moans" to get out of going to school inthe morning. A wife whos husband who dispite it all has to go to work and care for the rest of this mob all because someone came to visit while sick without considering what would happen after they left and now the poor guy is coughing so bad I decided to stay with the toddlers and let him sleep even though he knows that me and the toddlers sick at the same time will bring doom to us all between my immune system and their still developing ones.

Overwhelmed Underslept and have to see at my internist at 10am .....wish me luck I am off to bed ..... Wether you are or arent in my time zone sleep sweet when its your turn and may your night be pain free and peaceful

11

Thank you for the luck always needed in the chaos that is my life. My kids and husband actually are quite awesome its just the monster in law and other random people we encounter who think that a sniffle is not something you should worry about but can not grasp the concept that with or without PsA bringing a sickness into a house of 6 is just plain ole mean lol My family can pass a cold for two months altering the symptoms like mutant chemists on holiday in a lab >.< I had one plus on my side before this was PsA officially I had been misdiagnosed but on medication which left me with 10 years of meds we had tried but had not worked so when the official diagnosis got handed down I was able to skip in line so to speak and jump right into the big guns which sadly is no longer an option anymore but still if there was an option I would try it. I dont regret the failed treatments I do know the doctors, nurses, specialists, and everyone involved in my care wanted what was best I just wish my body would stop acting like a stubborn toddler and actually let something work. I am so sorry for the ulcer issues are you on a medication to protect your stomach from all the other medications? I take Omeprazole and I can say that at least my body allows it to do its job which has caused a decrease in tummy pain =D

SK said:

My insurance specified that I had to start with the least expensive treatment, so my first drug was Sulfasalazine, no help, just a stomach ulcer. On to the next on the list, good ole' Methotrexate. After about 3 months, woke up with blisters all through the inside and outiside of my mouth. Went to my Internist he said, "What in the hell are you doing on a Chemo drug when you have Arthritis, you should be on Enbrel" Week later Rheum tells me the blisters were from the MX, so on to Enbrel.

Will be evaluated end of Jan, if not significantly better, it's on to Humira.

Costochondritis was added to my long list, and for the second time I was told that I have had this for a LONG TIME.

He swears it is a genetic disease, so that means it was in the DNA at conception. WE have been screwed since birth! All it took was a stressor for it to BLOOM!

MamaMeli, I don't know how you are going to control people in and out with a MIL and five kids. Best of luck, it's a tough one! I feel for you!

12

I am lucky that where I live EVERYONE is paranoid about getting each other sick so we never get kids or adults coming over who are sick. Everyone is so busy that getting sick is something they can't afford. Plus copays keep going up so people don't want to have to go to the dr. because it is so expensive. So I don't need a special "it's because I have a compromised immune system so don't come over".

Plus, we've pretty much cut everyone out of our lives who aren't understanding and respectful of our family limitations. My oldest has Asperger's (autism spectrum) and between that and my severe PsA I don't have energy to educate people. If they say something stupid several times they are gone (like "vaccines cause autism, you know" or "have you tried cherry juice for your arthritis?").

13

Mamameli,
I think you’re right to expect the common politeness of people caring enough not to bring in germs of colds etc into your home especially as you and your family experience such extreme outcomes from this.

A good friend of mine has chronic asthma and every cold she comes in contact with ends with her suffering a chest infection. She then has weeks on antibiotics and steroid treatment.

She now politely refuses entry to anyone with the suspicion of a cold! It doesn’t make her popluar but if people don’t care about her she said she’s had to develope a thick skin to save herself

14

I have five kids, take care of other people's kids often, my kids have friends over, etc. etc. etc. Whenever we invite someone over, I make the friendly reminder that my immune system isn't fabulous, so if anyone is coughing (and it's not allergies) or someone in your household has vomited within the past 24 hours, please don't come. This is the basic rule amongst my group of friends, so that makes things easier.

My house is by no means immaculate. Seven people live here. We do wipe down surfaces appropriately. Sometimes when we have guests, they don't. Instead of making a big deal if it, I just do it myself. I also try to, as a general announcement, let people know that my energy levels are low, so if they wouldn't mind cleaning up the mess they/their kids make, that's appreciated and let them know where to find appropriate cleaning supplies.

My kids actually got chicken pox from a child who was vaccinated for chicken pox. Several vaccines are live vaccines, and most people don't know they can give people the disease they've just been vaccinated against. This can be dangerous with people with lowered immunity, the elderly, infants, etc. There are also many, many people who have been vaccinated for things and have not become immune ... the stats are something like 50% of people who were vaccinated against chicken pox are not immune, lower percentages for other vaccines. I got whooping cough as a child around 3 months after being vaccinated for it! Some vaccines also "wear off" as a child reaches adolescence, so many teens aren't immune either.

Basically my view is this - I can exist being paranoid about catching everything or I can LIVE my life. This doesn't mean that I don't do my best to avoid getting ill, but it does mean that I don't stress about it if I come in contact with someone who is sick. Stress lowers your immune system and inhibits your ability to fight illness and infection.

15

I know a lot of the issues stem from my own fear of confrontation where i do say dont come over sick and make it clear about my health issues my husband also has psoriasis skin issues only so far but way more severe than mine but still we have the issue of people who really have no regard even if i was not sick i dont want sick people getting my family six there are 7 of us plus 2 cats and a tarantula lol enough work thank you very much. I think im going to take that friend of yours wisdom and become a lot less popular and put my foot down swiftly to nip this issue in the bud. I had 3 lung infections since last november 2 stomach flus a bout of lock jaw caused by some infection that could be seen in my blood levels but still not figured exact cause I am just tired of being sick with random illnesses that people bring over. When we had to do a complete no one in the house for 6 months a while back no one here got sick not once so i know its possible to stay healthy and im just fed up i know i sound ranty and bitter but darn it all I am lol

Louise Hoy said:

Mamameli,
I think you're right to expect the common politeness of people caring enough not to bring in germs of colds etc into your home especially as you and your family experience such extreme outcomes from this.

A good friend of mine has chronic asthma and every cold she comes in contact with ends with her suffering a chest infection. She then has weeks on antibiotics and steroid treatment.

She now politely refuses entry to anyone with the suspicion of a cold! It doesn't make her popluar but if people don't care about her she said she's had to develope a thick skin to save herself
16

HUGE net hugs your way I can totally relate.... I am moving more toward the route of I dont have the energy to educate people and am just done. My kids and husband are great and their teenage friends actually are more aware and concerned and respect the idea of not coming over sick so i know that not everyone is completely ignorant of the concept of compromised immune systems its just the ones that stubbornly defend that its not an issue or that i should expose the kids to more to help them when they are older or plain out lie about being sick (uuggghhh). Our 15 year has learning disabilities and takes a lot of time and energy to help him my husband and him both have adhd no one can grasp the idea of an adult with adhd who is more than willing to help but will say start dishes have the phone ring answer it walk away from the dishes while talking and then start something else because his mind has checked off dishes even though only started and not done. He does get therapy and has learned to live with lists and carries a self made book to make notes in for each day but teaching our 15 year old these same lifestyle changes isnt always easy and hes easily frustrated with himself for being stupid when he is absolutely not stupid he has to try 3 times harder with everything than most kids. Our 3.5 year old is on the spectrum between Aspergers and Autism and still in the diagnostic process . hes luckily a sensory seeker which means hes a ball of cuddles and giggles rather than avoiding contact but its hard when people do not have a clue and offer up advice like a swat on the butt would fix that right up when hes overstimulated and melting down and all we need is a few minutes of calm and quiet. My tolerance for peoples rude behavior has been spent. I love kids I come from a huge family and have my own large family we always have "spare kids" visiting who somehow go from problem kids to helpful respectful angels when here and I love having family and friends around me. I do not love unwanted parenting advice and or medical advise from people who have no clue what its like to live the lives we live. I was told my the man who runs the local gas station he used to have skin like mine and he cured himself by putting caulk all over the infected areas and peeling it back off. Ohhh really yeah umm i do not think i will be trying that cure but thank you for the absolutely absurd advice >.< Keep your chin up you are not alone if you ever want to rant cry laugh or anything drop me a line ^^

Marietta said:

I am lucky that where I live EVERYONE is paranoid about getting each other sick so we never get kids or adults coming over who are sick. Everyone is so busy that getting sick is something they can't afford. Plus copays keep going up so people don't want to have to go to the dr. because it is so expensive. So I don't need a special "it's because I have a compromised immune system so don't come over".

Plus, we've pretty much cut everyone out of our lives who aren't understanding and respectful of our family limitations. My oldest has Asperger's (autism spectrum) and between that and my severe PsA I don't have energy to educate people. If they say something stupid several times they are gone (like "vaccines cause autism, you know" or "have you tried cherry juice for your arthritis?").

17

I've been dealing with PsA for 30 yrs and I've learned over time how being "not nice" to some people by dismissing them from my life leaves room for wonderful friends who "get it" to come into my life. I have a small circle of friends who are AWESOME. Only one has a chronic disease, but somehow the others just intuitively understand how to treat me. I feel able to talk about how I feel, and they don't say "but aren't you better today?". I guess I've seen the benefits of NOT expending energy to try and educate people who seem determined not to understand. There are A LOT of those people out there.

18

I seem to be a magnet for those people who cant or wont understand. I am from the US but have been in Germany for 12 years you would think by now we would have a larger circle of friends but sadly we do not back home we still talk to family and friends via phone emails texts and snail mail packages and letters some of them I talk to daily I know they would understand and we never had these issues with our circle of friends back home. Here its not so easy the language barrier is not the only barrier we have tried to overcome its the lack of family here and close friends are hard to find when you already have a life full of kids and jobs added to the odd situation our family is in and a fear of offending anyone and you get a lot of strange misunderstandings toss in a relative who comes from across the ocean and takes over your lives for months at a time wether you want them to or not and you get the mess we are in. Not to say Germans are not friendly they really are but it seems that investing in friendships with the crazy americans with all those kids is not something many welcome they are friendly and polite but are more like to send their kids to play with ours than to ever actually want to meet up and combine a trip to the park or whatever with the kids. We get it we are odd but we arent changing anytime soon except to make our lives a bit more simple by cutting out the people who cant respect our way of life

Marietta said:

I've been dealing with PsA for 30 yrs and I've learned over time how being "not nice" to some people by dismissing them from my life leaves room for wonderful friends who "get it" to come into my life. I have a small circle of friends who are AWESOME. Only one has a chronic disease, but somehow the others just intuitively understand how to treat me. I feel able to talk about how I feel, and they don't say "but aren't you better today?". I guess I've seen the benefits of NOT expending energy to try and educate people who seem determined not to understand. There are A LOT of those people out there.

19

I feel I can’t do anything else from so far away but to say a prayer for you and your family. God bless you. May he bring you peace and comfort from your troubles and illnesses.

20

Prayer is a wonderful thing thank you =) Im having a better day today my sons operation went well and that took a lot of stress off now for a weekend of crafting with the kids we are starting to make our christmas cards and decorations this year we may be done before new years lol

Skz500 said:

I feel I can't do anything else from so far away but to say a prayer for you and your family. God bless you. May he bring you peace and comfort from your troubles and illnesses.