Why do people think that every ones lives are like theirs, why do we compare ourselves to others? No one knows anyone else or their story. I don’t know what you have been through before you cut me off and give me a dirty look even though the walk sign is flashing and you’re driving. I am not mad at you when something comes up and you are late. I do not judge you when you are yelling at your child or partner in the middle of the store. I do not know your day, life or struggles. I do not need to, I try to be compassionate and let you be you. I for sure do not come tell you that you should not park in the handicap parking spot, or walk around your vehicle making sure you have a handicap sticker.
I am sick of feeling like I am holding up society, a burden even. Humans have no time for the strange. I walk with my son in malls and people almost run into him. I stop to cough and people run into me or run from me. My daughter is a hyper brat because she physically cannot sit still or stop making some sort of noise. My hubby has panic attacks and storms off, people look at me and my kids like we our abused.
I was talking to this lady on the phone the other day, simply clarifying a form that I am supposed to send to her, and she actually says I am sorry I am getting frustrated with your questions. I am sure I am not relaying what is needed clearly, but can she not see on my file that both my children have special needs, could she not her my son crying in the background and my daughter chatting/yelling in my ear about whatever she can think of so that I am paying attention to her and not who is on the other end. On top of this trying to log into my account to find the exact from so I don’t have to go through this again for the third time. I got off the phone and simply started to cry. My husband held me as I sobbed into his shoulder saying “I am not stupid” I am an exhausted Mom trying to organize and keep track of the never ending shit that is being thrown at me. I have encountered this situation with the government workers many times and also school, hospital and even some home situations. I have enough guilt and emotions going on in my head and don’t need to be brought down even further.
I feel lost, alone, scared and guilty most days. I try to be organized. I try not to run late for appointments. I try to keep my schedule straight. I try damn it….I try…..
Earlier my daughter and her friend did a present exchange. My baby girl got exactly what she wanted, however her friend got a plush animal that my child also really wanted… Well she cried and wanted her friend to go home and basically lost her shit. She also saw a video that her friend received from Santa and she broke down into sobs asking why Santa hates her, what she can do to get off the naughty list, she must be stupid. We hugged her told her we were sure she was on the nice list and that she was a very good girl.
To read this I bet you would think my daughter is an entitled brat, but earlier that day she helped her Grandfather vacuum, went out of her way to get her brother more lunch and feed him that soup. She also cleaned up her and her brother’s toy mess. She is a very emotional impulsive girl. She does not care that your feelings are hurt from the truth or from how she is feeling, she does not care that she is being rude or interrupting. UNTIL she sees tears or someone struggle. I should not even say that she does not care; she doesn’t understand why she upset you. She does have a heart of gold. I love her and she is teaching me so many things every day. She teaches me the true meaning of unconditional love, she teaches me patience (Man does she test me on this one) she also teaches me new ways to express emotions. When she is secure, like in her home she blows up, yells acts angry, does hand stands, cartwheels, dancing and more. For years I have felt like her anger was personal, but I am realizing she is actually freaking out to let out her energy that she has been holding back.
Try to not scratch an itch or not drink when you are real thirsty, this is how it is when she cannot move, twitch or even make noise. She also seems unfocused but lots get fooled by this, she is fully paying attention to everything, she can follow ten conversations in the same room. We can’t go to most restaurants as her senses are in overdrive and to combat that she acts out and can’t sit still. She will tell me when people smell weird, or like someone else. She tastes everything, even non edible objects.
She has to be a character every day, either an animal or a fictional character like catwoman etc… I wish she would feel secure in her body but she doesn’t and I have learned to work with this. I always encourage and compliment her when Kylie is around, but I also will play along to a certain degree and work with her characters.
She is sore all the time, crying out in pain due to joint pain, but out of the house she keeps it in. She holds back her tics and tries very hard to hold back her yelling. So at home she lets this all go. I love this girl. She is a true warrior. She fights (or feels like she has too) against others and also against her own little body.
Keep fighting my princess, keep fighting…
It has been too long since I have had the time to just sit and write. Finally on this wonderful snowy day I have the time to do so.
Since my last post I have been surrounded with nothing but medical appointments, scares and holding my breath. The funny thing is this is not about my CF at all. You would think that one family should only be allowed one sick/disabled person per house hold. I guess this is not the case.
You don’t know how scary it is when your baby is not quite right. Not meeting mile stones or just always in pain. Our first red flag should have been when my beautiful daughter would only eat orange for a week, or would only be carried a certain way. She would cry so hard in the car that she would hyperventilate. I thought she would outgrow this and just loved her for who she was. As she grew it did not get easier, other issues rose and my little girl was always complaining of muscle pains. Also she was always on the go, even with 104 fevers she was on high speed. We took her to the Doctor with this fever and the doctor said “she looks fine” took her temperature and took back her fine comment. She had a bad case of strep. She was my feisty red head, and that is all I thought for a long time.
Well all this was going on I gave birth to my son. His first red flag was birth, when we were in the hospital for three nights. My son decided to come out while I was not fully dilated. The nurses did not have time to set anything up, after a night of contractions he came out to fast. He was very bruised. The nurses told us that he was fine though. So after three nights we were sent home. He had some problems latching and seemed to sleep a lot, like all the time. I had to wake him to make sure he would eat. At our two week appointment we were told his head was on the small size, so he needed an MRI and X-ray. Just to make sure he was ok. He was three months when we got the results and everything seemed alright. I knew in my heart something was not alright. He would gasp in his sleep and I would have to touch him or pick him up and then his breathing would return to normal. I was on guard with him, ALWAYS.
He was about 6-9 months when I was becoming even more concerned. He could not hold himself up, or even turn over in his crib. I decided we needed a specialist. Hubby and I brought him to a well known childrens hospital. The nurse there told us, yes something was going on and he needed to be followed, and probably would need to go to therapy. They described him as having hypotonia. About a month after that we got a call and started physical and occupational therapy. We also saw a pediatrician that agreed with me that something was off and we needed to see a neurologist. I also noticed his eyes were not focusing, so we were also referred to an ophthalmologist. Turned out that on top of his low muscle tone he also had lazy eye. So we had to patch his eye everyday for 2hrs. Thus started our monthly eye appointments and weekly therapy appointments.
We just took it day by day, loving our wonderful children, and working around or with their needs. My superman was 32 months when he was watching Pokémon and all of a sudden he stood up and started walking and saying Pikachu. I cried and laughed at the same time. From then on he should stand and walk when he had something to hold on to. He was given a walker and special footwear to help him. When my boy turned three he had another MRI. The results blew us away. His brain had so much scarring. His neurologist was even shocked. We were told he has Cerebral Palsy and nobody would be able to tell us what he would be able to do. At the same time as this was, my daughter was having her own obstacles. Her sensory input was in overdrive and sounds and smells would send her running. She was either extremely happy or extremely agitated. I took her to the pediatrician and explained everything. Everyone just thought she was hyperactive. I knew deep down it was more. She had to taste everything, even what shouldn’t be tasted. She would have urges and just do them; she had/has no impulse control. We finally started seeing a behaviour specialist, and he was and is very supportive. He noticed she was shrugging a lot during one session and asked that I watch for more consistent movements, or repetitive movements or noises. It took me 2 days. I was shocked. She had whole leg spazums, constant shrugging, also no voice control. So we had her hearing and eyesight tested, nothing was out of the ordinary. She did need glasses but so did hubby so we thought nothing of that. After two weeks of video evidence and keeping track, she was diagnosed with tourettes. The Dr also wanted blood test cause she was always getting sick. Her white blood cells were high so he thought maybe allergies. She was tested and guess what, no allergies. To this day and a couple more blood tests her white cells are still high. She started getting dizzy and even blacking out a few times. She also gets this sudden pain in the back of her skull that cripples her. She tells us after the pain it feels like hot water is running through that spot and down her neck. Her muscles are still always sore and she will cry in pain some nights and mornings. She has only slept through a handful of nights since birth, waking with terrible nightmares or worries. I wanted her checked for an inherited muscle disease that runs in hubbys family. It is called Charcot-Marie Tooth. The Dr agreed and sent us to a genetic counsellor, which we already saw due to our son. The genetic counsellor also wanted to test the children for CF just to rule that out. Well we got their results at the same time and surprising us, our son had no abnormalities. However our firecracker had a duplication of chromosome 17. This explained the behaviour issues… Also the cf sweat test came back negative for our son but our daughter had a high salt level, so more blood tests for our baby girl. Turns out she is a carrier for CF but does not have it.
Well this Momma bears mind started putting everything together, and HOLY CRAP… all my children’s issues are related to the 17th Chromosome. Hubby and I got our blood taken to see where this was inherited from (which we already knew) surprise it was Hubby, we got his results last week and he indeed has the same as our daughter. About 5months ago hubby had to go on sick leave, he started suffering panic attacks, joint pains, migraines, and mood swings, also loosing feeling in his hands and lower legs. A year ago he woke up one morning not able to walk, it took him a few days to be able to move and he has not been the same since. Our family doctor did a bunch of blood tests and ordered an MRI and referred him to a Dr with some knowledge of CMT. His results showed that his Thyroid was REALLY overactive. So he was given treatment for this and diagnosed with hasimoto-thyroiditis. This helped with weight loss but not his other issues. So now we are waiting for Hubbys CMT results and the upcoming genetics appointments…
This is why I have not been blogging; my life has been surrounded by tests appointments and struggles.
I now have to go and carry my son down the stairs, give my hubby his pills and make sure my daughter is not climbing the curtains, and then once everyone is fed and had their meds, I will sit and have my three masks. Would I change anything…? NOPE…
These issues make us who we are. We are the closest dysfunctional family I know. We do things unconventional but always together. Hold your family close people, cherish every moment. Love each other for your differences. Oh and most of all take some time to just breathe…
Ok, it has been way to long since I have last wrote on here.
Life has been crazy for this cfer. My health has been doing pretty great considering. I got really sick in September of last year; I lost 10 pounds in two weeks. I got a lot of comments like Wow I wish I could do that… Yeah well I wish I couldn’t do that…
As everyone knows I started Kalydeco about a 1 ½ ago. I have never felt better I am so thankful and not a day goes by that I am not grateful for this new lease on life. I am however going through some situations that I have never had to deal with before.
First my weight…I can no longer eat whatever I want…No more burgers for breakfast. I went from 112 when I started K to 160 in 6months… yup that was a shock… I have been working out daily and eating a healthy lower fat diet (I still have my 15-20gm of fat twice a day) However with the weight came an increase in energy and more exercising has kept my lung function up. I still lose the weight very quickly when sick as I mentioned above. I have not let myself go to 160 again but make sure I have some weight in case I fall ill.
Second… I seem to have lost my corpse bride complexion. Yup the green zombie hugh is gone. I have actually been asked if I was pregnant because of my new healthy glow…lol…
Then there is my posture. I no longer need to slouch with my shoulders up to breath. I have also noticed that the hollow in my throat is not sucked in anymore. My clubbing is decreasing slowly still and I am starting to get my smell back. I could not smell anything a year ago and yet now I get faint smells like perfumes, fruits, and coffee mmmmmmm
The only scary thing that has happened is that my mind has blocked what it felt like to not be able to breathe. I think back to 1year ago when I was being evaluated for a transplant. I remember how scary it was and I remember the gasping and all the problems I faced like not being able to walk from my basement without coughing… The puking when I couldn’t stop coughing… I know I don’t ever want to go back to that… however the actual feeling???? I guess it is because your body blocks out the pain. The only thing I am sure of is that I will work my butt off and never ever get complacent with my lungs. I know that I still have a lot of scar tissue and still have 5 or more infections a year that need antibiotics.. I feel amazing and I am trying to live one day at a time.
Just keep swimming…Just keep swimming..
So I have registered to walk in the Great Strides walk for Cystic Fibrosis this May. I want to make a difference well I can. I went to my doctor appointment last week and my lung function was down a touch, not a big problem for a cfer true, but I am a little run down and so put on a new antibiotic. Which I really hope works otherwise it’ll be back in the joint for a tune up for this chick. Anyway I realised I better get this butt in gear and start doing things I have always wanted. So I now have a Well I live list not a bucket list, I am not doing these things before I die, I will be doing these things well I live…
I just want everyone to know that living with Cystic Fibrosis has made me a fighter. Well regarding health matters, I am a chicken when it comes to other things, like spiders…little aliens sent to stalk me and torture me…Sorry that story is for another day.. Anyway.
I am never going to give up in this battle, I will breath so deep that it feels like my lungs are going to pop, trying to get every ounce of breath I can. Then I will blow out as fast as I can as if I can blow cf away…
I will dance till I can’t breathe, not caring that I look like an angry ape chasing something. I will walk until my lungs bleed.
CF will not be what drags me down.
Stayed tune for the adventures of a CFer with flare and attitude.
SIDENOTE: If you wish to sponsor me for the walk here is my link.
So I went to my first concert ever Friday night…I am actually well enough right now to go and do these sorts of things, so I am trying to live my life and have adventures.
First of all it was AMAZING. I went to see Hedley and they were so great, lived up to all my expectations. They sound better live then they do on their albums. I really would have liked to meet them and ask them to spread the word about CF but oh well, can’t have it all.
So the concert started and as soon as that first drum was hit. I felt it in my chest. It was like the best physio I have had in a while. The vibrations and singing had me coughing up all the crud. I felt wonderful after.
So today I got up sang my heart out as loud as I could as I danced around the house. My kids stared at me like I was crazy for a minute but then thought what I was doing looked like fun, so all three of us ran around singing ,dancing, falling over and laughing. It was fantastic and I feel so energized, my winter blues are gone, and I am not taking half a day before all the crud is out of my lungs, all the crud came out about ½ hr into our dance fest.
It has made our entire day better, not just physical but emotional as well… So thank you Hedley for the start of this new CF routine. As always you guys ROCK!!!!!
Living with a unexpected expected expiry…
My parents were told when I was diagnosed at 16months, I wouldn’t live past 5, that I would not walk for a long time because I was just to underdeveloped. While within a month of the right treatments I was running and playing and ahead of my expected motor skills… Then my parents were told I would not make it past 18…
At about 13 I started seeing an amazing Doctor who told me you can live as long as you’re determined too, He told my parents I could live to be a Grandma if I looked after myself. He was positive and respectful. He changed my outlook on CF.This blog is a shout out to this man, as I was thinking about him this morning. If I could find him I would not know what to say cause thank you is not enough. He gave me the determination and reached me even during those damn rebellious teenage years.
I still had everyone around me telling me oh your still alive, yup seem to be thanks I would say… or the question my husband loved, should you really plan for a long term relationship with her…We were 16 when people were saying this…I am proud to say I have been with this same man since 1997 and we are happily married with two children. He is the love of my life.
While I am now 32 and living, not expired…No one knows when their time is coming. Yes we may have some advance notice, but we don’t need to hear that we are past our best before date.
Ground control to Major Tom, HELP…..
So I have tried to get in contact with everyone from my fav bands, to Ellen..I get that these are very busy people and pretty positive that they don’t even see what I am writing..But HELLO, FATAL DISEASE HERE… I don’t want my name known or to get any money, I simply want CF to gain popularity…Right now CF is that quiet loner in school that no one really notices unless it is in thier face.. This is sad for many reasons…
1…Are we not alone enough, not being able to be in the same room with another with cf. having the support online is great, but there is nothing like getting to know someone face to face. Which will never happen!!!. This is due to the fact that every individual person with CF carriers their very own bacteria that could cause great harm to another…This does not affect anyone without cf, so no worry there.
2…We are secluded in the hospital (which I do like the private room) we are secluded in clinic, and we get secluded in public due to our lovely hacking cough… It is funny that my hubby and kids find me in stores by my cough.
3… I have to put myself in a bubble per say, well still trying to live…I have secluded myself from gardening, I happen to get pseudomonas infections every spring from gardening…I have secluded myself from public pools, hot tubs, heck even cleaning fish tanks… Just in case….
All I ask is for some CF publicity to make it well known. People are not going to help with something they know nothing about…
I am really hope that not just people with CF are reading this, cause we all need to….
SPREAD THE WORD…CYSTIC FIBROSIS IS OUT THERE………………
You would think after 32years of going to the doctors every three months give and take, that I would be a pro…well heck no, I am still that terrified little girl, holding tight to the hand of my loved one. I am so nervous every time, I can’t sleep the night before, or eat the morning of; even if I am feeling great I still get so scared. I can’t explain it, I know the Doctors are there to help me, but they remind me of the truth. I need to improve in my eyes, and I know that might not be realistic (and I get reminded of that) but in my mind I can improve, this is just temporary.
I am preparing for my PFT (pulmonary function test) next week. It is like an exam for me, and anything under 40% I fail. I blow in balloons, I puff up and blow out as fast as I can every morning and night for 10min, anymore and I feel faint… I start this routine about two weeks before my appointment. I look after myself and exercise all the time, but just before my Dr Appointments I up the game.
I will do anything to hear those words; you’re doing really well, keep it up. Or the piece of resistance, let’s try a month without antibiotics cause your doing so well.
Wish me luck; I hope I am just full of hot air…
The other day I got a FB message from a fellow CFer, and she brought up how CF needs to be more public for children, that she hid her CF from her peers. Unfortunately so did I, and who knows how many others did the same…
I had so many stories to cover my butt. I have asthma is a big one I used, just because everyone knows about asthma and would ask no questions or give me that look. My pills I would take in secret or sometimes not at all, and oh how I would regret that the next day…
Once when I was in public school, someone saw me taking my pills, and told the teacher that I was popping speed…Yes I am a hyper person but that is just silly…After this event I told the teachers but no one else. I kept it like a shameful dirty secret.
The people I did choose to tell, well they didn’t know enough about my cf so I could manipulate my disease to make it much less severe than it was. At one point when I was a naive teenager going through the whole I am indestructible stage, I tried smoking. My friends that knew would ask if I should do that, and I would respond by saying my CF only affects my stomach. They didn’t know enough to doubt my lies… (I paid for those lies with a two week stay in the hospital) The other thing I would do was make silly things up. I told a few people that my vit e was hash oil to increase my appetite. Anything to make cf sound cool or like a very minor issue.
I got ill many times not doing my routines and taking my meds like I should have, and I wish I could have been open stood up and said, yeah I have CF. I chose to stand out in other ways, to hide the cf part of me. I dressed in unusual ways; listen to unusual music, things to make people know me for anything but, oh there is that girl with cf… I grow everyday to overcome this…even now while I am having a mask I make sure I am not in front of a window in case someone were to see me, and not because of my cf this time but what if they think I am smoking a bong or something. I am trying to build awareness so that young cfers do not need to feel this way anymore. Wear your cf on your sleeve you didn’t ask for this, this is just how we were made…