Tag Archives: immune system

Sometimes I just want to scream- an update on our diseases.

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I am trying to process all this new information, come to terms with it, understand it…. but its hard to come to terms with things that are maybes, things that aren’t for sure.

With the Celiac process I also felt sorrow, and guilt (because mummy didn’t know) and then I read and read and read and learned whatever I could, made a support group because there wasn’t one, met others and I processed. I not only processed but I excelled in my knowledge, helped others (and still do) and it was all ok. Celiac was ok, our disease was not a lonely thing. We were “severe” symptom wise and issues wise, not those happy go merry celiacs that go out and function somewhat normally. We had issues, many of them. Now ofcourse I know most of those issues were probably not celiac at all but all the other crap that we now know about.

Trying to process a disease that I have to google every time I need to write it because I cant learn to spell it (hypereosinophilic syndrome) , trying to process a disease that she probably has but they dont want to say for sure yet because there is no damage, (lupus and rheumatoid arthritis), trying to process and understand a disease that is super rare and the only specialist that deals with it in the country we live has closed down his email and no doctors know how to get us the help we need (Ehler Danlos Syndrome). What else…? Haha, I mean, we for real have to think twice to make sure we include everything when we are told to give a medical history. The allergies and the celiac take a backseat will you, you are so minor I mostly forget! I even find that offensive myself as a celiac advocate, but it is how it is right now.

Then there is her immune system, a system that we know its faulty, but they cant figure out what part. She gets sick and her system doesn’t respond, she doesn’t fight. Her levels are ok on paper, but in reality…. not so much. They are testing and re testing, the road has already been so long, and yet there is an awfully long way to go before we actually get to someone saying a. yes, this is whats wrong with her immune system, or b. There is nothing wrong with her immune system and whats happening is a symptom of her other disease(s) that are not yet fully diagnosed. 

Meanwhile we are at home a lot. We rest. We eat. We try to live a normal life. What is normal anyway? This is normal to us, pretty much has been for years, naming the crap really doesn’t make much difference in how we live, although I must say I do feel better.

When baby girl says she has a bad day now and she’s tired, I let her stay in bed all day. A year ago I would have felt guilt, guilt that she isn’t playing outside, guilt that we never DO anything, guilt that she didn’t get enough fresh air etc etc etc. All that guilt by the way, it wasn’t my guilt, it was the guilt that society puts on you when you have a child that doesn’t look sick. If they don’t look sick they cant be, and so they must conform to a life where you do stuff every day, go out every day, dont use a puschair when you are 6 etc etc etc. Now the only guilt I have is that I pushed her when obviously on those bad days she needed to rest.

Oh, and I have guilt about her hair! Gosh, this hair that we grew and grew, and she would cry when we brushed and I thought she was just being a kid. She asked to cut it, and I didn’t say no, but I talked her in to keeping on with growing it long, every time. Now after reading and reading I realise that most EDS patients have “hair pain”, many cant stand to have their hair brushed as there is so much pain involved. Who the hell am I to try to talk her in to having it long?? I listen now. I have learned to listen with ears that aren’t tainted by our societies pre set expectations of what life should be like. I listen like a true listening expert and whats more, I hear her.

I will keep processing, I will keep on hanging in there. Check in on us on facebook (which is far easier to update then here).

Love and spoons

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Germs, school rooms and dreaming of a farm!

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Not feeling very “bloggy” lately. I can honestly saw we are all exhausted.

End of May, I finally went to the hospital and handed all our papers in. So many hospitals working together on our case. I just wasnt ready to hand it in sooner. It looks like they will still want us to go to Warsaw to check something there. We have the unexplained signs of autoimmune activity and bla bla bla. Bla bla bla may seem a bit blasé, but I just cant manage more then that right now. Im tired of “it” constantly being what our life revolves around. Waiting now to see how often we need to re test her igg’s also.

On a very positive note, she has not had pneumonia since she was taken out of school. TOUCH WOOD (as she sits downstairs with a big wheeze and a cold). She even had the same 48 hour cold / virus that here brother had a few weeks back, and hers ALSO lasted 48 hours. I almost cried with relief. I had no idea her immune system knew how to do that!!

The doctors are hopeful that this break is all that we need, but lets see, only time will tell.

On the school front, we have our plan, and our back up plan. She will have tutoring in school 3 times per week without germy other kids around. Hopefully she will still be ok with this once flu season starts, if not we will have to take her out fully. Im ok with all of this, I have gone over the plan in my head a million times!

New house is looking fab, and thanks to my Pinterest research, our school room eats other peoples school rooms for breakfast! We LOVE the school room, its probably our favourite room! A couple of more things to do, then its all ready.

We had Celiac kiddos birthday party just a few days after moving in, and it was fab! I thought the preparations would send me in to a stress fit, but it really wasn’t so bad! Guess Im becoming a pro at catering to people the gluten free way. Even the corn free and egg free is getting a tad easier, although I do miss being able to buy bread!

Our biggest enemy lately is not gluten anyway, its those pesky germs that everyone carries around, the stuff that lives in peoples noses, the stuff that little kids sneeze out and cough out and touch and then attack celiac kiddo with. Ok, fine, nobody is attacking, but sometimes it really feels like it. Its SO hard keeping her safe without going overboard.

I go to the supermarket early in the mornings now when its not so busy, that way she wont need a mask, more times then one Ive changed checkout after seeing a snotty cashier sneeze / cough in her hand and then carry on moving peoples groceries to bags. I don’t even want to start thinking about the stuff we don’t see!

Im telling you, the only safe way to live is in a house in the country, where you grow and raise your own food! It used to be a sort of joke I told, but I am more and more serious about it as time goes by! haha (any excuse to wear wellies full time really).

So, thats us! 3 more days of school, then maybe, hopefully, we can all re gain some energy! Which might mean more blog posts. Lucky you 😉

-Linda

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The image is of a big scary germ. Obviously. Just incase you didn’t get it 😛

Yesterday my heart broke a little……

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We were sitting in school Celiac kid and me, waiting to pick up big brother. All of a sudden I realised she wont be back there, not just for ages, but ever. The school is building a new building, and if/when she does go back, it wont be there.

Its very different sitting in school knowing you can send her back any time you like because you took her out, just for a bit, to sitting in school knowing she cant go back for a year or 2 because the dr. said so. Even though its what my mummy heart has wanted and thought about for some time, the fact that we now have it on paper just seems so final.

The lumps in my throat got all big and horrible and for a horrible moment I thought I might cry. I didn’t. Thankfully, lucky none of my closer mum friends were there, because if one of them had asked how I was doing the floodgates would have opened.

Im ok, its for the best, and I know that. But there is still this huge sadness inside that soon A’s class wont be her class anymore, it will just be the class that she should have been in if she attended school. As new kids come and go, “her class” wont even know who she is anymore.

Onwards and upwards now with positivity. I am mourning but I should be celebrating, because we may be looking at a year or two with no pneumonias, and maybe even no hospital stays? Thats got to be a good thing, right? A year or two with mummy all to her self, a year or two of doing whatever she wants (within limits obviously). A year or two of me not stressing every time the phone rings (incase its school calling to tell me to come get her quick). A year or two with one on one teaching and learning!!

Bring it on, Im ready (or am I?…)

-Linda

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An unwilling homeschooler

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Yup. Not only am I one of those mums *insert eyeroll*, I am now also about to be one of THOSE mums *insert even bigger eyeroll*.

We are back from the lung hospital. We have the results from the immunologists. And guess what, there is nothing wrong with with our kid! (Apart from recurring pneumonias with low oxygen levels).

PCD, CF, back normal, no growths or foreign objects in the lung. No asthma although she may be heading that way. A couple of new allergies diagnosed. All immune levels are ok, some a bit low, but within the accepted range, some signs of autoimmune activity that needs to be followed up but thats it.

The doctors agree that its not normal to get so many severe pneumonias, and they agree the low oxygen levels that go along with it are also not normal, all our specialists were so sure they would find something, either in the lung or with her immune system, and I know I shouldn’t be disappointed, because obviously its great news that she’s ok and its not one of the big things, but I cant help but think that this isn’t over at all….

Oh, and there is a plan. Her pulmonologist and immunologist agree that she needs “time off”. A year off school I asked, and the reply was; “probably more like 2”.

I should be happy about this as well as my gut instinct has been telling me for a good year or two now to take her out of school so she can rest, but again, I feel cheated somehow, I wanted a better answer, an answer where we could actually DO something.

I know, it makes sense to have her rest and not be near other kids for a couple of years, if one pneumonia takes 6-12 months to get over she really does have her work cut out for her. But a diagnosis of ‘lots of bad luck and vicious circle and immune system that needs to mature etc’ just doesn’t sound very much like a real diagnosis to me.

One of her antibodies to pneumonia was a little low, but not so much, her overall igg is a bit on the low side but acceptable, the igg1 a bit on the low side but acceptable. FUCK acceptable. Acceptable doesn’t get us anywhere. What if we wait two years and then after that there is no change?

Now back on to the steroids also, yeah, the ones that make her not grow and suffer from bone pain. The ones that make her cry walking down the stairs, the ones that when she came off them she rapidly grew 3 cm!

Im so so tired.

On the bright side we have had doctors confirm she shouldn’t be in school and the paper work to support it. On the not so bright side I need to come up with a home schooling plan in a country where you are only allowed to home school in extreme cases and if so then it must be in Polish.

Anyway. Bla bla. Still sort of processing all this, and Im feeling positive, ish, but also not so much.

Deep breaths and all that.

-Linda

Krakow for the day

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So yesterday we went to Krakow. Met a wonderful professor who spoke exellent english, she took her time to explain things thoroughly and answer my many questions in regards to previous results. We are now looking at antibodies to different pneumonias and other illnesses, she suggested that although the IGG subclasses and overall IGG was ok (a tad low but ok) that maybe perhaps the issues is that the immune system , although it has what it needs, doesn’t function normally when there is an infection, she will follow up with us once we have been to Rabka. She even gave me her personal mobile number. Such a relief.

We came home, and I was so tired I ate and went to bed with the kids at 8pm! Probably a good thing as I wont be getting a bed in Rabka! Ha.

I need to say that I have been so surprised by the lack of negative attention we get from A wearing a mask, I expected stares etc, but we have had none of it! Some looks, yes sure, but accompanied by smiles, nothing else. Infact, yesterday in the Krakow hospital a man came running after me to ask where I got the mask! She was wearing her pink minnie mouse mask at the time. I am so glad we got them, it was the right choice for sure. And the immunologist agrees she should absolutely wear one in crowded places until we have a firm diagnosis.

I wish I had been able to help the man with finding them, he spoke no english and me explaining etsy in Polish may not have been very successful! Good luck to him, poor family feeling that they need one. Makes me want to give him a hug.

-Linda

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Everything happens for a reason…. right?

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Not going to update you all on speculations. There are many. When I asked our doctor if they would find it this time the reply was ‘we are not letting you go til we have’. Feels good, reassuring. I cant wait now to find out, I cant wait so that we can help her.

This last pneumonia scared the living daylight out of me…. at one point we had 12, yes twelve doctors in our room, from ICU, pulminology and immunology, all trying to figure out what to do with this tiny weenie little girl who kept going lower and lower with her oxygen levels.

She didn’t speak for 4 days, then on the 5th day small words came. Day 6, finally sentences. Im in bits now. I wasn’t then. I was the calm and collected super mum, always am. After… thats another story. Day 8 we went home. We have enough medications on the dining room table to run a small clinic.

So now what? We wait, we wait for test results on the IGG subclasses (other fancy terms no parent ever should need to learn!), then once we have those we go to Rabka, another hospital in the mountains, but with more advanced diagnostic methods, they may need to see the inside of her lungs (how the hell this happens I have no idea, Im scared to ask).

Then after that, unless we have a 100% diagnosis at that point we are off to Krakow to the immunology hospital there, who have diagnostic tools that they don’t have here.

Whatever is going on with pumpkin pie, its not her celiac. This crap, its something else. No stone will be left unturned, but the belief is that its her immune system, something I have been saying for a couple of years now.

I do believe everything happens for a reason, and if this is what we have been sent to deal with then so be it. We need to try to make the best of it and do the best we can to make life as “normal” as we can, for celiac kid, but also big brother who always ends up coming second.
And no matter what we are going through, there are always people who have it far far worse. Complaining wont help.
We are still lucky. We could be the far far worse people….

-Linda

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We have the muppets.

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Sometimes I think to myself, if I wrote about ALL the stuff that happens in our life, people would think I made it up. So I wasnt going to write about the last few days, but I will anyway. Because Im laughing now, and its funny in a comedy movie sort of way. Short version.

Thursday afternoon going home from school A (Celiac kid) says her cheek hurts ALOT. I think maybe she has a small sore in her mouth, maybe she got contaminated. With clean hands I check the inside of her cheek. Nothing there.

Fast forward to two hours later, I’m lying on the sofa playing some game on my iPad, kids are watching TV. I turn around to look at A who is whinging about her cheek and I literally FLY up and in to action. Her cheek, on the side, slightly below the ear, has swelled up to golf ball size! All Im thinking is airway! What if the swelling is inside too! Call our doctor who says she cant see us straight away but to take her to the emergency room. We already had shoes on! GO! Mad drive through the city. Get to emergency room. 2 doctors and 4 nurses then spend ten minutes arguing about how to do our paperwork, kids are Polish, but have no pesel numbers (long story). Im thrusting my credit card at them saying it doesnt matter we arent asking for free care, we will PAY, just please LOOK at her. Finally another doctor looks at A while the others argue with her that its against the RULES (people in Poland are very concerned about rules and the right way to do things – at times, its infuriating – because while they all argued, A had swelled up further). She reassures me there is no threat to the airway, but because we are paying we must go to another part of the hospital. Off we go, its far enough that we need to drive around.

We get to the gate I think we are meant to go in, and the man speaks no English, I refuse, REFUSE to give up, so I shout at him in English, Im tired of being ignored (in general, not by this man), its a hospital, my kid needs to be seen and I cant understand you and LET ME IN GODDAMMIT! Barrier opens. Jenki bardzo! (later I realise we actually parked in the doctors only parking, poor guy, but at least shouting in english sometimes works. I need to send the poor guy flowers or something, I thought he was just being difficult because I was speaking english – oops!)

In this part (of the hospital) we are helped instantly. The hospital is huge, clean and very empty. A doctor and a med student see us. After a while the Dr calls for all the english speaking med students to join. Story of our lives, A is an interesting case, but hey, the more the merrier 🙂

The doctor is very concerned that it looks like mumps, and although A has been vaccinated we are at that point again where we wonder, does A’s immune system know she has been vaccinated? I call my husband, tell him it may be mumps, he’s like a gigantic question mark, SWINKA I say. Because Im getting really good at Polish disease names and hospital lingo.

Because its suspected mumps we need to go to another hospital. Some infectious disease place. The couple behind us warns me in english the place looks awful and not to be frightened, its not as bad as it looks. I think in my head it must be like the Poznan place and smile and say thank you.

GPS and me and kids drive to the other hospital. Well. GPS takes me to allotments in the middle of nowhere, I reverse, go around. Search. Eventually hubby has to help by phone, him and his Polish friends all get involved. We need to go to opposite the graveyard! but opposite the graveyard there is something that looks like an old deserted asylum, the kind of place horror movies are made in, you go in…. but NEVER come out….. I drive around, many times. I find a door, hubby says, ‘Go in and ask’. I sit, in my car, thinking NO WAY. Im laughing pretty much the whole time, I actually started laughing already in the first hospital, because these things, they only happen to us.

I take photos, because Im thinking no one will believe me. They are all iPhone photos, not great quality, but I have to share them…..

 

So, hubby calls them, and they explain exactly in which part of this huge complex they are. By this time its getting dark, and the feeling that Im in a scary movie is hard to shake off.

I park, away from walls and shadows, haha! And walk towards the building. A nurse nods and smiles and points to some chairs under a tree. Wait there she says. Im not kidding. Under a tree.

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Part of me now thinks Im in some joke show, you know where they pull a prank on you and someone will jump out in a minute and explain its just a joke.  That doesn’t happen. Instead a dr. opens the door and lets us in. She doesn’t look like someone from a joke show OR a scary movie, she speaks english and she’s lovely. She examines A and says no tests needed. She believes its an infection of the salivary gland and not mumps. She goes to type some forms for us and I cant help it, I have to snap some more photos, because  feel like Im in a time warp of some kind and Im in the wrong decade… possibly even century!

I get my paperwork and get in the car. My phone beeps and I look, its from hubby. ‘So, is it muppets?’.

-Linda

A note, I have now been to 5 different hospitals in Poland and although two of them were extremely old buildings the staff have all been great. Most medical facilities in Poland look nothing like the one above so don’t let this post put you off.