Diabetes-Johanna

Well my weightloss isn't going too well right now. My body is still changeing due to my counting calories and the exercise but the scale has stood still for almost 3 weeks I'm afraid. This week hubby and I are racing to loose 1,5 kilo each so hopefully it will show some results - but it's still frustrating. But to be honest... this happens every time I try to get a healthier lifestyle going. It takes a long time for my body to catch up and do what every other persons body would have done - loose the weight. I remember before we went to Australia we went to the gym 6 days a week and still my body did not react the same way as my hubbys. I almost didn't loose any weight but then eventually something happened. I took a week off from the gym and just rested and that week I lost a lot of weight and after that the body started responding correctly. Right now a lot of stuff in my life is connected to my exercise and the gym. Exercising gets the endorfins going...

I read a lot of articles about how you can exercise and loose weight... well yes you can but you have to do 7000-7500 kcals to loose 1 kilo. I mean... that's too much. If the goal is to loose weight then it's 90% the food and 10% your exercise - so that's something to Think about if you're frustrated about not loosing any weight even though you're training. My diabetes is still perfect from counting calories and I couldn't be happier. I really should send in an HbA1c just to see the real differense. I'm expecting it to be grand so I really hope that it is but you never know until you get the results. Maybe I'll try and send it in on monday och tuesday. My weight have been still for a few weeks now and it's been frustrating for me as well but now it has started to move again. We've had a couple of weeks with sick kids, being sick our selfs and all routines you get from being at work just went out the window. But... three days back at ...

My mom is visiting us for a few days while dad is on his golftrip. We were watching old videos of the twins and it just hit me that I had totally forgotten what it was like to have normal babies. The way they moved, the sounds they made, how they laughed and what they laughed at, the... just the normal and non-pressured everyday we had back then... Today Freja turned 3 years... time has just flied and we have so much going on all the time and sometimes we just forget to enjoy the moments, to saver them. Having a special needs child means to have a more strained everyday. Looking at the videos there were also videos of Freja before we knew anything was odd about her - it was a bit bittersweet. She was so cute, such a sweet baby and how could we ever think something was odd about her.  She is still so cute and so sweet but she is not an ordinary baby and living in it we maybe don’t think that much about it, but when she makes progress we get super happy - much happie...

Känner att jag nog ska göra ett inlägg utifrån hatattackerna i VM och det stundande valet Sverige ska göra för framtiden. Jimmy Durmaz var så hyllad efter insatsen i kvalet och det är förvånansvärt vad snabbt "fansen" vände honom ryggen efter matchen mot Tyskland i lördags. Att kalla honom diverse skällsord (rasistiska skällsord), fälla diverse rasistiska kommentarer och mordhota hans liv, hans frus liv och hans barns liv... ja det har sänt oss, de riktiga fansen, i chock. Det är ett fruktansvärt beteende. "I med- och motgång tillsammans" det är så man är ett riktigt fan. Eller som min kusin skrev "i landslaget är vi gula och blå, inte svarta och vita" och så tycker jag att det alltid är. Ja vi ser olika ut men det har vi alltid gjort; en är lång och en är kort, en är normalviktig och en är smal, en tycker om gröna kläder och en annan gillar rosa, en har blåa ögon och en annan gröna, en har nästan vitt hår och en annan helt svart. Varför spelar hu...

Being a special needs parent is different! Imagine being overjoyed about your kid rolling of the couch - of course not because it hurt them but because they managed to roll over. Or being overjoyed because your baby shewed on... well anything really cause it means sparking that curiosity that most kids have early on. Imagine being burnt out from worrying, from fighting for your kids needs and rights, from making every appointment, from waiting for the diagnosis, from being left to fend for your own family, from feeling like you are all alone. But you're not! There are so many familys in the same situation and they need someone to connect with as well. To be allegable for the Swedish Habiliation unit you need to first get the diagnosis wich leaves a lot of familys in nowhereland while they are waiting for the diagnosis. We waited for 9 months, however our specialist unit helped us getting assessed by a psycologist that could refer Freja onwards to the Habilitation u...

We've been talking about the Swedish welfare system for children and people with disabilitys. The running party did downsize that welfare system a few years ago and have now changed colors pending the upcoming election. However that downsizing period did a lot of damage to people, parents, familys and childrens lifes in order to get to those cheating the system. In my opinion there is a very easy way to get to the cheaters - LSS need to cooperate with the Habilitation unit. That way there would be no middle man able to cheat and all LSS really would need is a consent from the person or the parents. Easy... Freja is disabled so we have nothing to hide and no reason to cheat the system so please... get my consent and just help us without us having to go through such a long process or having to wright the longest application (again) cause the Habilitation unit could just deliver that directly! I mean... our lifes will already be hard - always! So why does everything surro...

So... a while ago I posted about how I don't feel like myself anymore - that this experience with my daughter and me being burnt out-depressed-anxious has changed me. Well I'm glad to say that I'm starting to feel like myself again, something I actually didn't think was possible. My hubby told that 'Yes you will come back again' but I didn't really believe it. I was torn down and needed to slowly build myself up again and it was a lot of work, a lot of hard work. I've been working 50% now (started with 25%) and soon I will go up to 75% so I'm well on my way. I'm thankful for my supporting family, my amazing doctor and insightful therapist. Mental health usually intails stigma but in truth we all meet difficult times and you never know how you'll react. I never thought this would've broken me but it did. BUT there is a way back and eventually you'll get there. Nobodys life is perfect all the time cause life moves in waves ...

I’ve always been more rational than emotional. What happened with Freja and how that burned me out, the depression and the anxiety has luft me with my emotions more on the outside. I think those that have met me would probably not describe me as emotional, maybe they would even describe me as harsh. So this new life being so close to tears, to all my emotions is really hard getting used to! Last year one of my favourite artists died and I got really emotional. I wasn’t a hardcore fan, I hadn’t Even seen a show, but I loved the music and every playlist I ever made had at least one song by the band. Being more emotional means I feel more for others than I used to. I’ve always had a lot of empathy and compassion for others but now I just tear up aswell, a lot.  So a few days ago Swedish superstar Tim ”Avicii” Bergling dies. He was only 28 years old, it’s very sad and very chocking. I mean almost everyone listen to his songs and love them so there are a lot of people m...

Finally we have had two weeks without any of the kids being sick, I was the only one with a little bit of a cold but it's gone now. Finally!!! So last week I managed to go to the gym tuesday-saturday-sunday. It feels really good to be back at it again. Saturday I went to a training session in a group, it's the toughest session in our gym I think, anyways the instructor is so good. But training that hard when I'm not in shape gave me the worst muscle fever. Even though I have lost a few kilos it still feels like such a long way to go before I reach my goal. After the twins I had 5 kilos extra but after Freja it was kaos and then when we started investigating for a diagnosis it just got worse and worse - so now I have made it difficult for myself and I have to loose 20 kilos! Aahhrggg... Well I am on my way now so I just need to keep my focus! I'm really looking forward to better regulated diabetes, better fitting clothes and just feeling better overall. Th...

Idag rockar många sockorna! Det uppkom ju som ett sätt att uppmärksamma Downs syndrom men vi som har ett barn med en väldigt ovanlig diagnos som också är ett syndrom och som också är en avvikelse i en kromosom - i gen TCF4 i kromosom 18 - vi rockar också sockorna... fast vi kan göra det varje dag! ;) Stora barnen har börjat prata om att Freja är annorlunda ibland. Vi pratade en dag om att de kunde gå när de var 1 år och någon dag efter det så pratade de med mig om det som "mamma, när vi var 1 år då kunde vi gå, men Freja kan inte gå!?", "nej Freja kan inte gå än men hon kanske kan lära sig det", "ja och hon kan lära sig att prata", "ja kanske, vi får se. Vi hoppas att hon ska lära sig att prata men annars kanske vi kan ha en app där hon kan trycka på bilder så att vi förstår vad hon vill", "ja och då pratar hon så", "ja då pratar hon så". *snyft* Barnen är väldigt uppmärksamma och de förstår så mycket fast de bara...

Yesterday was a really good day! Nice weather and I got a day with friends just hanging out and talking about life and whats next. It was really nice and I realized that I miss hanging out with them a lot. Our family life is full on, we have our three kids and weekends are often holy and it's often family time. During the week I pick the kids up a couple of hours before David comes home, then it's dinner and often after that bedtime. During the week there just isn't time for much else, not right now anyways. The kids need their sleep and still goes to bed at 19. We get them up at 6 in the morning and they can still be very sleepy. Well, wonder how they will cope with after school activities when that time comes. They have one activity at sundays now. Anyways, what I was getting at is that it was noce to have a little break, hang out with friends and just be me. But I still suffer from residue from my burn out/depression/anxiety so when I was just about to g...

Förslaget om att dra in personlig assistans för barn under 12 år och äldre över 80 år blev nedröstat - eller inte ens nedröstat för det var aldrig en fråga om att ta upp det! TACK OCH LOV! Ibland undrar man hur de tänker när de kommer med ett sådant förslag!? Upp till 12 år, alltså nästan tonåringar, och då ska man inte kunna få den avlastningen... på 12 år! Alltså hade förslaget gått igenom hade man haft minst lika många sjukskrivna föräldrar som barn med funktionshinder eller behov av personlig assistans. Nu utreder de att ändra i assistansen istället - för att urskilja de som behöver mer omvårdnad. Ibland kan allt kännas så himla hopplöst och man verkar inte kunna påverka någonting utan allt bara händer mot en. Jag kanske får ta och bli politiker! Hahaha... Dock tycker jag att regeringen borde införa an väldigt enkel förändring; ge LSS möjlighet att ta in journalkopior direkt från Habiliteringen/utredande enheter eller andra medicinska instanser. Detta borde redan v...

When we had twins our pediatric nurse was really worried I was getting a postpartum depression - but i was really just tired... so so tired! I think there are many similaritys between being depressed and sleep deprived. Sleep is just so important for your well-being. Sleep, excersize and food. ;) I've been reading a book by Swedish brainscientist (is it even called that? hahaha) Anders Hansen called "Brain Power". It is really good and it explaines why you need these things for your brain and how you can mend os heal your brain. It gives you some epiphanys and you hopefully get determind to test the thesis that the connections in your brain will improve in a year if you sleep well, eat well and excersize at least 30 minutes three times a week. I'm already a believer, I just really wanna believe that I can change things for myself and my well-being so I'm gonna do this and I hope I can make it a habit and not just testing the thesis. I wanna live well,...

I have always prioritized my kids before all else - I even think I made a post about it cause my diabetes suffered a bit. Right now I'm trying to prioritize my own well-being cause it's really bad right now. I gained a lot of weight during my last pregnancy and havn't lost any of it, this effects my diabetes demanding more insulin and being harder to regulate, loss of strength both physical and psycological among other stuff. It's been really hard to change my mind set and actually allow myself to go to the gym and take that time to get back to a good feeling for and about myself. Just being at the gym three times a week at least 30 minutes each has made a ton of differens for my psyche. Right now I havn't been able to train because of the child deseases the kids bring home from day care have just relieved each other just when I think I'm getting better! I really miss the gym right now and hopefully I can go there soon. February is usually calle...

We were watching a speech by an American psycologist about todays social media displays. All the pictures you see are perfect, the perfect dinner, the perfectly cleaned house, the perfect family Picture, all the perfectly happy people with perfect make-up, perfect hair, expensive clothes and accessories. That is a hard reality to live up to. However, the thing is that nearly nobodys life is like that - nobody lives in a perfect house ad. When you actually live in your house that will show no matter how much you clean or how many times you do a raid to pick up all the stuff your kids spread over the floors - your house will never look that perfect, that untouched. And why should it? In these pics you only see a fragment of that room and they have probably just pushed the mess out of the way to get that "perfectness". For adults, hopefully, we can see past that and understand what reality actually looks like, but for kids and young adults it may not be so easy. It ...

Asså diskussionerna kring LSS blir bara värre och värre!   Om vi först ska ta personlig assistans till våra äldsta - alltså alla över 80 år. Man har arbetat hela sitt liv eller kämpat hela sitt liv men helt plötsligt betyder det ingenting. Du får ingen medbestämmanderätt över ditt liv utan ditt enda val är ett boende. Idag när vi vet att den stora majoriteten vill bo kvar i eget boende så länge de kan, också idag när en flytt från eget boende kan leda till en snabb försämring av hela allmäntillståndet hos den äldre. Men detta blir belöningen för våra allra mest utsatta. Skam.   Om vi nu ska ta barn upp till 12 år. Oj jag får tårar i ögonen bara av att tänka på vilka ord jag ska välja för att beskriva det svek som dessa funkisfamiljer nu känner, som vi känner. Att som enda avlastning få valet att lämna bort sitt barn på korttidsboende känns verkligen helt orimligt. Föräldrar med barn som behöver hjälp med det mesta i vardagen, som bara vill kunna umgås och leka med sit...

Jag kan inte släppa alla dessa tankar om LSS. Jag har nu haft diabetes i 15 år i år, shit 15 år, och en sak med diabetes som brukar beröra mig är familjer som har barn med diabetes och speciellt när de inte får den bästa hjälpen som finns tillgänglig. Det finns till exempel blodsockermätare som mäter kontinuerligt och som larmar, antingen till handenheten eller till telefonen (man kan ha flera kopplade nummer), och för mig är det HELT ofattbart att dessa barn inte får en sådan enhet direkt. Här har vi familjer i kris som måste gå upp en gång i timmen VARJE natt för att mäta blodsockret på sitt barn med diabetes. Diabetesen beter sig oftast annorlunda på små barn än på vuxna, och annorlunda på tonåringar än på vuxna, och annorlunda på nydiagnostiserade än på de som haft diabetes en längre tid. Men att bevilja dessa kontinuerliga blodsockermätare för dessa familjer hade gjort så himla stor skillnad för deras livskvalitet och deras ork - dessutom hade det underlättat för förskola...

I see all these pregnancy- and babypictures everywhere and it’s hard not to feel afraid for them! My whole pregnancy with Freja all ultrasounds showed a healthy baby with good heartrate! After she was born she developed och progressed the way she should for the first 6 months! She was like any other child without a neurological condition. And still... she didn’t turn out like any other child! I’m so glad that we are done with having kids - we have three beautiful hooligans and that is really more than enough! Having identical twins is a low procenter at 0,25 % chance, and both surviving is probably even less of a chance. Having a child with Frejas PTHS is for now around 1:100 000 so thats really low chance of that happening - and since neither of us were carriers, it was a spontanious mutation of the gene, I think that’s even more rare. And to be honest pregnancy never agreed with me. I had hyperemesis both times, with the twins I hurled every day from morning until ab...

Ja men detta känns ju rättvist... I fredags tog jag sista penicillindosen, jag väntade 24 timmar och sen gick jag och tränade. Åh det var jätteskönt och det kändes så bra och motiverat för en gångs skull - riktigt go känsla. Jag har verkligen saknat det för senast var nog innan jag blev gravid med tvillingarna, vi har ju tränat efter det men det var nog ändå inte den känslan som jag har nu! På lördagskvällen sen så började jag få lite känning av förkylning men tänkte att det skulle gå över... men vaknade i söndags med dunderförkylningen Allan! SJUKT ORÄTTVIST!!! Jag har varit jätteskötsam under sjukdomsperioden, jag har inte tränat något men jag har ätit nyttigt, jag har tagit vitaminer och varit väldigt duktig. I min deppiga period hade jag med all säkerhet köpt en påse chips och ett choklad eftersom det är synd om mig när jag är sjuk (haha som en förkyld man) men inte denna gången. Ändå så fick jag denna "bestraffning"! En annan anledning till att jag såg f...

Sitter just nu och går igenom alla foton sedan Klara och Stella föddes - kan man ju göra nu när jag och Freja är hemma på penicillinkur! ;)   Tanken är att jag ska börja ta tag i deras fotoalbum. Först ville jag beställa fotoböcker som då redan är klara och inbundna men dels är det lite mysigt med riktiga album och handskriven text och sen vill jag dessutom kunna sätta in dagis-/skolfoton så att de får dem samtidigt.   I alla fall så blev det ju väldigt tydligt när jag kom in på 2016 att vi nog levde i förnekelse kring Freja för redan på fotona så kan jag nu se att hon är ju långt efter i utvecklingen och när jag dessutom precis gått igenom tvillingarnas bebis-/barnfoton så är det fruktansvärt stor skillnad redan i början.   Jag vet att vi diskuterade det flera gånger men det är lätt att skjuta de tankarna ifrån sig för ingen vill ju ha ett sjukt barn.   Blir lite ledsen av de första månadernas bilder, inte för att det var sorgligt utan för att det v...