Tuesday, December 20, 2011
Just another day
Friday, December 09, 2011
A fire and a good blanket
If you ever had a chance to sit and watch a roaring fire with a warm blanket on your lap, I am sure you can agree there is nothing like it. What makes it even better is when you are chilled to the bone and not feeling up to snuff. The flames have a calming effect, and the heat is a welcomed band aid.
I woke up today, for the first time in weeks , with the weight off my chest. I actually feel I can take a deep breath again. It is so refreshing, and honestly long over due. The medications are finally kicking in, I have been doing nothing but resting. Which if anyone knows me, is not an easy feat! But I have listened to my doctor, my family, my friends, and nurse Annika. Today is the first day I have been out of my pajamas, and will admit that I was not smelling so good, so a shower was a treat today. I did a load of laundry, packed my son's bag for cubs winter camp, and just snuggled with my mutts. I received several emails, a few phone calls, two visits, one special delivery from one beautiful woman ( wink, you know who you are!) I just got surprised from another friend. Her children are in a home school group, and a cute Christmas card came hand signed by all the kids,delivered with some hand made truffles. Thank you madam, and tell your kids thanks for bringing it over. I truly value all the love and concern I have experienced over the last few days. God is grand! Thank you Lord for the support you offer, and for your gracious healing hands. Thank you for warm fires, fuzzy blankets and loving mutts! I could do without the sloppy kisses that come with them though. Amen.
I woke up today, for the first time in weeks , with the weight off my chest. I actually feel I can take a deep breath again. It is so refreshing, and honestly long over due. The medications are finally kicking in, I have been doing nothing but resting. Which if anyone knows me, is not an easy feat! But I have listened to my doctor, my family, my friends, and nurse Annika. Today is the first day I have been out of my pajamas, and will admit that I was not smelling so good, so a shower was a treat today. I did a load of laundry, packed my son's bag for cubs winter camp, and just snuggled with my mutts. I received several emails, a few phone calls, two visits, one special delivery from one beautiful woman ( wink, you know who you are!) I just got surprised from another friend. Her children are in a home school group, and a cute Christmas card came hand signed by all the kids,delivered with some hand made truffles. Thank you madam, and tell your kids thanks for bringing it over. I truly value all the love and concern I have experienced over the last few days. God is grand! Thank you Lord for the support you offer, and for your gracious healing hands. Thank you for warm fires, fuzzy blankets and loving mutts! I could do without the sloppy kisses that come with them though. Amen.
Wednesday, December 07, 2011
A gliche in the silver lining
Yesterday I received the lowest, or the lowest blows. We are talking gut wrenching, heart breaking reality. I was given the news yesterday that I had cystic fibrosis. Now you may be wondering " Am I missing something here, ? " Yes, six years ago I sat in front of one of the leading doctor's in cystic fibrosis care in Canada, while she explained to me" Genetically you have cystic fibrosis, but from a medical stand point, you are symptom free, and we will only monitor your care once a year for statistical purposes. Just for the benefit of clearing things up, to this date my lung function has been amazing, I had full pancreatic function, and besides having some bowel issues ( which only one doctor would admit it was a complication of cystic fibrosis) I was symptom free.So I had cf, but I didn't have cf. Year after year I would go to my cf clinic. I would do my bone density scan, fecal studies, blood work, x-rays, and my pulmonary function tests. All would come back wonderfully, with averages above average even for a "regular" woman of my age. I turned 39 this year, and my body started to fight me in so many functions. I noticed colds hung on longer, my bowels were too frequent ( 4-6 a day) and my belly pain was horrible. I started to pay more attention to my stomach ( besides the fact that it forced me to notice with the worshipping of the porcelain queen) I pretty well chalked this up to my body healing from gallbladder surgery and just being run down. At Annika's appointment last week I had advised the doctors to take extra care in washing their hands, as I have been fighting a cold for about 4 weeks. The whole family had it, and I joked that I am sure Annika will come down with something soon.
Well after all my yearly tests at London, I was ushered into a clinic room, the norm for my yearly clinic. The difference was I was feeling like crap. I couldn't get warm, and I just felt generally weak. I couldn't believe how this cold got the better of me. It was getting really frustrating from my point of view, and I voiced my concern to my nurse. Well after a kind, but stern tongue lashing, I was advised that from blood, xrays and PFT's, the evidence was there that I had a chest infection. I was also told my pancreatic function was gone, and this was the explanation for my bowel issues.
Do you know what a brick to the side of the head feels like.....I sure as hell do! My new doctor came in. A very kind gentleman that stated he understood that I have been told alot in the last few minutes, but from his point of view, I was full blow cystic fibrosis status......WHAT, WHAT, WHAT????? He wanted me to start seeing him every three months. The dietitian and the physiotherapist would be in to go over my care. They wanted a glucose tolerance test, because my blood showed CFRD. My first reaction to this was shock! All these years, and all the remarks from doctors stating this was just a formality, I wish all my cf patients were as easy to care for as you. So after a 5 hour appointment and a bag full of new prescriptions , I made the journey home to process everything with my family.
All these years, under the belief that I was one of the lucky ones. I was untouched from this silent stranger cf! I HATE CF! I HATE CF! I HATE CF!
All these years I have fought for my daughter's cure, my daughter's control, my daughter's future. Never knowing I was fighting for my own.
All these years of misleading me, of no treatment, of no physio!
So now my lung function is half of what it was 6 years ago. Now my pancreas doesn't work, now I have to do physio everyday like my child. I am sure there will be many that will read this and think " Welcome to my world!" but what they don't understand is I was told by many cf doctors, your mutation in little lung problems and full pancreatic function.
WTF?
I asked my doctor......why was I told this? Why was I given false information? Why?
I had access to a vest for the last 6 years, yet my old cf doctor told me there was no need. Proof was in the history....I went 33 years without knowing I had cf. Why should I change anything now.
The doctor replied" Your mutations are in the top 32 mutations tested for. From our research , less that .08% of people with cf have my genetic makeup. So that limits the doctors and their resources. Of those .08% of the cf population, I am one of the oldest with this makeup from what he can see. Most are infants or teenagers. Of all those with my mutation, none are showing any symptoms of cf. So I guess in a way I am a matriarch....lol. Oh lucky me! He then went on to say it is possible with these mutations, that cf doesn't present itself until a person's more mature years. I guess a way of saying I am old!
So basically he will use my information , to place in the cf data banks, so future cf patients with my mutation will receive preventative care. His fear is that in 6 years my lung function has decreased 50%, he doesn't want that trend to continue on. He doesn't want me on the transplant list in 6 years.
Annika was diagnosed, I went through all these. I know next comes depression, mourning what once was. But the best of all after all that comes the fight. The fight to prove all statistics wrong! This cf messed with the wrong bitch!
To all reading this, give me some time to process this, give my family time to process this. Thanks for your support. So now my silver lining is gone. Truth be told, I always had a thing for gold anyways~
Well after all my yearly tests at London, I was ushered into a clinic room, the norm for my yearly clinic. The difference was I was feeling like crap. I couldn't get warm, and I just felt generally weak. I couldn't believe how this cold got the better of me. It was getting really frustrating from my point of view, and I voiced my concern to my nurse. Well after a kind, but stern tongue lashing, I was advised that from blood, xrays and PFT's, the evidence was there that I had a chest infection. I was also told my pancreatic function was gone, and this was the explanation for my bowel issues.
Do you know what a brick to the side of the head feels like.....I sure as hell do! My new doctor came in. A very kind gentleman that stated he understood that I have been told alot in the last few minutes, but from his point of view, I was full blow cystic fibrosis status......WHAT, WHAT, WHAT????? He wanted me to start seeing him every three months. The dietitian and the physiotherapist would be in to go over my care. They wanted a glucose tolerance test, because my blood showed CFRD. My first reaction to this was shock! All these years, and all the remarks from doctors stating this was just a formality, I wish all my cf patients were as easy to care for as you. So after a 5 hour appointment and a bag full of new prescriptions , I made the journey home to process everything with my family.
All these years, under the belief that I was one of the lucky ones. I was untouched from this silent stranger cf! I HATE CF! I HATE CF! I HATE CF!
All these years I have fought for my daughter's cure, my daughter's control, my daughter's future. Never knowing I was fighting for my own.
All these years of misleading me, of no treatment, of no physio!
So now my lung function is half of what it was 6 years ago. Now my pancreas doesn't work, now I have to do physio everyday like my child. I am sure there will be many that will read this and think " Welcome to my world!" but what they don't understand is I was told by many cf doctors, your mutation in little lung problems and full pancreatic function.
WTF?
I asked my doctor......why was I told this? Why was I given false information? Why?
I had access to a vest for the last 6 years, yet my old cf doctor told me there was no need. Proof was in the history....I went 33 years without knowing I had cf. Why should I change anything now.
The doctor replied" Your mutations are in the top 32 mutations tested for. From our research , less that .08% of people with cf have my genetic makeup. So that limits the doctors and their resources. Of those .08% of the cf population, I am one of the oldest with this makeup from what he can see. Most are infants or teenagers. Of all those with my mutation, none are showing any symptoms of cf. So I guess in a way I am a matriarch....lol. Oh lucky me! He then went on to say it is possible with these mutations, that cf doesn't present itself until a person's more mature years. I guess a way of saying I am old!
So basically he will use my information , to place in the cf data banks, so future cf patients with my mutation will receive preventative care. His fear is that in 6 years my lung function has decreased 50%, he doesn't want that trend to continue on. He doesn't want me on the transplant list in 6 years.
Annika was diagnosed, I went through all these. I know next comes depression, mourning what once was. But the best of all after all that comes the fight. The fight to prove all statistics wrong! This cf messed with the wrong bitch!
To all reading this, give me some time to process this, give my family time to process this. Thanks for your support. So now my silver lining is gone. Truth be told, I always had a thing for gold anyways~
Monday, December 05, 2011
A visit to Children's Hospital
This past week we just had a cystic fibrosis clinic. I always dread these clinics. Often I am reminded of my failures. My failure to fatten my child. My failure to be there as a doting mom, because often my health is very poor. My failure to fix my child's every need. Even though my head tells me these failures are out of my control, my heart still aches when she fails to meet the normal requirements of her health. I know I have no control over the infections she gets, I do everything to avoid them. Keep a clean house, stock my fridge with fresh foods, keep my children active, and give them the appropriate medications and vitamins. Still a part of me holds myself liable for a poor PFT, or for a virus, or poor weight gain. The mom in me tells my head.....hook her up more often to her G-tube, do more physio, make better , nutritious food. I beat myself up for all her bodily failures. I cringe in the parking lot every cf clinic. This clinic we went and did her PFT's first. Last visit she blew an 80 FEV, this time she blew an average of 100.....100%.....perfection. Her xrays were spot on, and her blood was great. Her vitamin levels where right on. We are just waiting for her sputum results. For the first time in a long time, I felt good leaving her clinic. I half expected it to be a joke, I truly was waiting for them to chase us into the parking garage to tell us they mixed up the test results. But here we are after a nice, quiet weekend, still no call from London. Still functioning . Still relishing in the results. Annika's lung function is amazing, all signs of infection in her blood are gone, she grew 2 cm and gained 3 lbs since her last visit in August. God is good.
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