So my CF doctor has been asking me to see a PT at the hospital for several months now. When I switched to the adult doctor, it was one of the things they told me they do differently. My pediatric CF doctor was also licensed as an adult doctor, but the majority of his cases were children. And when my husband and I started trying to conceive, he decided to cut the cord so to speak. Yes he has had patients become pregnant, but because the adult team was/is just as good…he (the peds doctor) knew it was the right time to switch. I was excited for the change, but I knew I would miss the team terribly. I sobbed the whole way home…an hour driving in the car. Yup, that wasn't an easy transition.
One of the things they do differently at the adult clinic (same base hospital) is monitoring everything regardless of how you're feeling. I was used to pretty much only being monitored when I got sick. I saw the PT once when I got my vest eight years ago. I hadn't had a chest Xray in years and I had never had a glucose tolerance test. (GTT is the test for diabetes, since CF patients can develop it later in life).
Anyway, that switch took place about two years ago. And starting last fall, my new doctor asked me to consult with the clinic's PT who specializes in CF. Because of my work schedule, I was just able to go a few weeks ago. It was actually perfect timing. I had started working out using a DVD set. It's called T25 and is part of the Beachbody (P90X) program. It is a lower intensity, but gets good results and my friend had it so she let me borrow the set. The program I did was 25 minutes a day of pretty intense workouts. Each day is a different focus…cardio, abs, lower focus, upper focus, and total body circuit. So you work out 5 days a week, then have a stretch day and a day off. It was great for the first two weeks. A half hour a day, I could do it right when I got home before hubby got home, then I'd cook dinner.
At the beginning of week three (right after Easter), I started getting this severe pain in my mid-back on my right side. Like right at the bottom of my shoulder blade. I took a few days off and then got back to it. At the end of that week, the pain was back. :( I knew my appointment with the PT was coming up, so I stopped working out. After a few days I made the trek into the hospital to see him. He did a lot of strength tests, we talked about my exercise routine, and I did a treadmill test. I have very weak shoulders and hips, which is probably why my shoulder had started bothering me. He was very knowledgable about this particular program I was doing, so that was a bonus! Since some of the DVD's have a lot of floor exercises, including planks, push-up walks, and others, the PT suggested I do a modified version and only do the planks until I build up strength.
As for the treadmill test, that was also mediocre news. The good news is that my legs got tired before my lungs did…but that was also the bad news. The way he explained it…the fact that my lungs didn't tire out was great. That means, I have good lung function and I can workout the rest of my body to get up to snuff. If my lungs had gotten tired first, it would be much harder to gain that function/strength with exercise. The reason this was also bad news was that it means my body is VERY out of shape. #feelingfat ;) I have always made up excuses for myself. And yea sure, I work 40 hours a week, 6 days of the week, take care of my house, my husband and myself. I don't always have time for exercise. But the moral of the story is I need to find time. I need to do this for my own health, especially since we want a family. I want to be able to see my family and grow old with them.
Coincidentally, the same day I saw the PT, I got approved for a grant through the CF Lifestyle Foundation (here is their website http://www.cflf.org) to pay for a gym membership! So last week, I got my butt to the gym. I am really hoping this helps me to stay accountable and actually do the workout. I did the elliptical, treadmill and some weights twice last week. And then yesterday I started the DVD workouts again too. I am hoping to sort of alternate, gym 4 times a week and some DVD's in there too. With my gym membership, I will get a one hour free training session and I actually can't wait for that! I want to know what weights to do for different parts of my body and how much to lift. Here's to a new awakening, and a better me! I will try and update my workouts once a week and maybe that will motivate me more. To share what I've done and keep track. I am so excited for this opportunity and so grateful to CFLF for this grant.
Monday, April 27, 2015
Sunday, April 19, 2015
Infertility Week
Apparently it is infertility week. I was planning my next post on being a general CF update, but I think a lesson on our fertility journey will be better for right now. Especially given what happened to me last night. I was out with a bunch of girl friends…two of whom have beautiful babies! Of course we get talking and the subject of babies comes up. One of the girls knows about my struggles to conceive, but I really don't/didn't want to discuss it with the others. Its a painful discussion and I really don't want sympathy. But of course, the one who doesn't know about our struggles asked if we are trying. I wanted to pour my heart out, but at the same time I didn't. I don't want to cry, i don't want them to feel badly. It was a big struggle going on in my head. I think she asked in an excited way…an "oh a playmate for my baby would be great!" sort of thing. But I just can't come to terms with the discussion. YES I would love to give your daughter a playmate, YES I'd love to join the "mommy club"…but I couldn't face that discussion. Its so difficult to talk to people who don't understand and thats why I started this blog. This is where I can pour my heart out, my deepest thoughts and angers and I can lash out without worrying about what people think…and maybe someday I will share this story with pride (with a baby on my hip). But for right now, we are winging it. Maybe it will happen soon, maybe it will happen in years. There is a reason and time for everything.
My husband and I decided three years ago to stop our birth control and sort of "go with the flow" to get pregnant. We tried off and on for about two years before we decided to seek help. At times during those two years, we tried in earnest…temping, timed intercourse, watching my cycle. Nothing worked. For about a six month period, I was also in a drug study for CF treatment and we did have to stop trying, but I never went back on hormonal birth control. The definition of infertility is typically that you try for one year and if you're not pregnant…you seek help. Or you wait longer and then seek help.
We talked many times over the course of our two years. The subject of seeing a fertility specialist was a daunting and scary one for both of us. I was eager to go after a year of trying, husband not so much. I never pressured him, I would gently ask and if wasn't ready, then I wasn't ready either. It had to be a decision that we made together. So right around the two year mark, he asked nonchalantly "so…do you still want to see the sperm doctor?" Or something around those lines. Typical guy response. Of course I wanted to jump right on that and make an appointment, but again, I didn't want to pressure him. So I waited a few months or weeks, I can't remember and then I asked him again. He still seemed interested so I went for it.
In October of 2014, we had our first consultation. It was mostly a fact getting experience for the doctor. He asked about both of our medical histories, etc. Because of where I was in my cycle at that time (I think like cycle day 8, so at the very beginning)…we had to wait a whole month to start any testing. I was instructed to call on day one of my cycle and they would schedule it all. Everything had to be done on certain days to see if I ovulated, to see if I had the right hormone level and to see if my tubes were intact and clear. In the meantime, husband scheduled a semen analysis. (I swear I would much prefer any of my testing over that particular test!)
A few weeks after all of our testing was done (so about 6-8 weeks after our initial consult), we met with the doctor again. Apparently all of our testing was normal! His swimmers were good quality and quantity. My tubes were clear, hormone levels good and I appeared to ovulate normally.
Because it had been so long trying and NOT conceiving, our doctor told us he could try a few different things. He could try IUI or intrauterine insemination, which is the less invasive procedure. The short of this procedure is that they give the female hormones to "force" ovulation, and then on the anticipated day of ovulation, the male goes in to the office and produces a sample. A short while later, the female goes into the office and the sperm (in a large syringe like apparatus) gets placed directly in the woman's uterus, bypassing certain parts of the female anatomy.
Our other option was to go directly to IVF, in-vitro fertilization. This procedure is much more invasive and requires many more hormones for the female. It works the same in the beginning, they give you medication to ovulate, but in higher quantity so that you release more eggs. Then the doctors go in and retrieve the eggs. The male then produces his sample, and the two are placed together in a petri dish and you hope that some of the eggs fertilize for use later. The fertilized egg(s) are then placed back in the female with the only thing left to happen is to attach to the females uterus.
Two weeks after each of these procedures, the female goes in for a blood pregnancy test. We decided (or insurance did) that we would go with IUI to start. Our insurance covered the majority of this, so thats what pushed our decision. We tried twice and got nothing. After the second one, we had a death in the family so we decided to take the month off. I wanted to be there with my family and not have to rush around for tests and procedures. In a sick twist of irony…I got very sick the day before the funeral…and I couldn't be there for/with my family. It truly broke my heart. But looking back that was a good time to stop our treatments because I wouldn't have been able to do it with being sick.
It has since been a few months and we have not yet been back to the fertility center. We are not financially or emotionally ready to take the step to IVF. We can still try the normal way and see what happens. We know there is nothing holding us back, so maybe that will break our curse. And maybe it won't…we will be patient. And when the time is right it will happen or we will decide to try something else.
Thanks so much for reading all this mumbo jumbo!
If you are looking for more info or stories of infertility, I love this one. I follow this family on Facebook, you've probably read about them. The Gardner Quads. She posted a link to her very first blog post this morning…and with me being new to the blogging world, I hope it is etiquette correct / ok to share her post. She writes wonderful stories about her journey and portrays some of my exact feelings! Please go read it. If you have not struggled with infertility, it may help you understand what someone else is going through…and if you have struggled or are currently struggling it will make you feel less alone.
http://gardnerquadsquad.com/two-years-ago-yesterday-my-story-with-infertility/
My husband and I decided three years ago to stop our birth control and sort of "go with the flow" to get pregnant. We tried off and on for about two years before we decided to seek help. At times during those two years, we tried in earnest…temping, timed intercourse, watching my cycle. Nothing worked. For about a six month period, I was also in a drug study for CF treatment and we did have to stop trying, but I never went back on hormonal birth control. The definition of infertility is typically that you try for one year and if you're not pregnant…you seek help. Or you wait longer and then seek help.
We talked many times over the course of our two years. The subject of seeing a fertility specialist was a daunting and scary one for both of us. I was eager to go after a year of trying, husband not so much. I never pressured him, I would gently ask and if wasn't ready, then I wasn't ready either. It had to be a decision that we made together. So right around the two year mark, he asked nonchalantly "so…do you still want to see the sperm doctor?" Or something around those lines. Typical guy response. Of course I wanted to jump right on that and make an appointment, but again, I didn't want to pressure him. So I waited a few months or weeks, I can't remember and then I asked him again. He still seemed interested so I went for it.
In October of 2014, we had our first consultation. It was mostly a fact getting experience for the doctor. He asked about both of our medical histories, etc. Because of where I was in my cycle at that time (I think like cycle day 8, so at the very beginning)…we had to wait a whole month to start any testing. I was instructed to call on day one of my cycle and they would schedule it all. Everything had to be done on certain days to see if I ovulated, to see if I had the right hormone level and to see if my tubes were intact and clear. In the meantime, husband scheduled a semen analysis. (I swear I would much prefer any of my testing over that particular test!)
A few weeks after all of our testing was done (so about 6-8 weeks after our initial consult), we met with the doctor again. Apparently all of our testing was normal! His swimmers were good quality and quantity. My tubes were clear, hormone levels good and I appeared to ovulate normally.
Because it had been so long trying and NOT conceiving, our doctor told us he could try a few different things. He could try IUI or intrauterine insemination, which is the less invasive procedure. The short of this procedure is that they give the female hormones to "force" ovulation, and then on the anticipated day of ovulation, the male goes in to the office and produces a sample. A short while later, the female goes into the office and the sperm (in a large syringe like apparatus) gets placed directly in the woman's uterus, bypassing certain parts of the female anatomy.
Our other option was to go directly to IVF, in-vitro fertilization. This procedure is much more invasive and requires many more hormones for the female. It works the same in the beginning, they give you medication to ovulate, but in higher quantity so that you release more eggs. Then the doctors go in and retrieve the eggs. The male then produces his sample, and the two are placed together in a petri dish and you hope that some of the eggs fertilize for use later. The fertilized egg(s) are then placed back in the female with the only thing left to happen is to attach to the females uterus.
Two weeks after each of these procedures, the female goes in for a blood pregnancy test. We decided (or insurance did) that we would go with IUI to start. Our insurance covered the majority of this, so thats what pushed our decision. We tried twice and got nothing. After the second one, we had a death in the family so we decided to take the month off. I wanted to be there with my family and not have to rush around for tests and procedures. In a sick twist of irony…I got very sick the day before the funeral…and I couldn't be there for/with my family. It truly broke my heart. But looking back that was a good time to stop our treatments because I wouldn't have been able to do it with being sick.
It has since been a few months and we have not yet been back to the fertility center. We are not financially or emotionally ready to take the step to IVF. We can still try the normal way and see what happens. We know there is nothing holding us back, so maybe that will break our curse. And maybe it won't…we will be patient. And when the time is right it will happen or we will decide to try something else.
Thanks so much for reading all this mumbo jumbo!
If you are looking for more info or stories of infertility, I love this one. I follow this family on Facebook, you've probably read about them. The Gardner Quads. She posted a link to her very first blog post this morning…and with me being new to the blogging world, I hope it is etiquette correct / ok to share her post. She writes wonderful stories about her journey and portrays some of my exact feelings! Please go read it. If you have not struggled with infertility, it may help you understand what someone else is going through…and if you have struggled or are currently struggling it will make you feel less alone.
http://gardnerquadsquad.com/two-years-ago-yesterday-my-story-with-infertility/
Friday, April 17, 2015
A Little Background
When CFer's have our checkups, we call them clinic visits. I typically go every three months, unless I get sick. But even when I get sick, I am lucky enough that my doctor doesn't necessarily need to see me. He will call in some meds and I am good to go from home.
When a CFer gets sick with a lung infection, it can take any number of medications to get us better. There are a few oral antibiotics, which for a non-cfer, would be considered the big guns, the good stuff, or really strong meds. For a CFer, these meds are simply old hat. We've been on them 218,937 times (or something like that), we know the drill. For a CFer, the "big guns" are IV antibiotics…which for some are also "old hat". We've also been on these many times, but when we are on these is typically when the others don't work or we aren't getting better or we keep getting sick.
I have been extremely blessed over the last three years in that I have only had to use oral antibiotics. It has been a whole three and a half plus years since I was hospitalized for a lung infection. It has been three years and about 2 months since I was on home IV's. I have several theories as to why I have been this healthy:
1) I don't teach anymore. I went to college to pursue a degree in education and I was able to finish my college career in 4.5 years. Again, I was relatively lucky in my health. When I finished college, I decided to substitute teach, hoping that someday I'd break into a local school district and have the job of my dreams. That never happened. For that, I am grateful. I subbed, (including several long term positions in the same classroom for weeks at a time) for around 5 years and was sick ALL the time. Also teaching put a huge stress on my body…the workload was tough and I dealt with a lot of needy students (for lack of a better word). I was emotionally drained thinking about "my kids" and what they went through on a daily basis. It hurt my heart to see them struggling in school and know that they weren't getting the help they needed outside of school. I just wanted to help them all. To this day, I still think of many of them and it has been four years since my last subbing job ended.
2) My husband and I bought a house. We were living in an apartment building with lots of other people…and smokers and animals. Honestly, even though the animals and smoke were within the walls of their own apartments, I think it definitely affected me negatively. We love our home and couldn't be happier with the location.
3) Also, when I was subbing, I was working two jobs. Subs don't really make much money and I didn't want to get rid of my retail job in case I needed to fall back on something. So I subbed most days and then worked retail 2-3 nights a week and on one weekend day. It was extremely stressful and put a huge strain on my body. When I stopped subbing, I stayed with my retail job for 3 years until last summer when I got a new job in customer service. With this I am able to work 37.5 hours a week and be home to cook dinner. I have a better commute and am able to spend more time on my treatments. And I don't have to take work home and I enjoy my colleagues.
I was going to post my clinic update along with this post, but I am kind of running out of time here. So I will split it and update my clinic visit next time. :)
When a CFer gets sick with a lung infection, it can take any number of medications to get us better. There are a few oral antibiotics, which for a non-cfer, would be considered the big guns, the good stuff, or really strong meds. For a CFer, these meds are simply old hat. We've been on them 218,937 times (or something like that), we know the drill. For a CFer, the "big guns" are IV antibiotics…which for some are also "old hat". We've also been on these many times, but when we are on these is typically when the others don't work or we aren't getting better or we keep getting sick.
I have been extremely blessed over the last three years in that I have only had to use oral antibiotics. It has been a whole three and a half plus years since I was hospitalized for a lung infection. It has been three years and about 2 months since I was on home IV's. I have several theories as to why I have been this healthy:
1) I don't teach anymore. I went to college to pursue a degree in education and I was able to finish my college career in 4.5 years. Again, I was relatively lucky in my health. When I finished college, I decided to substitute teach, hoping that someday I'd break into a local school district and have the job of my dreams. That never happened. For that, I am grateful. I subbed, (including several long term positions in the same classroom for weeks at a time) for around 5 years and was sick ALL the time. Also teaching put a huge stress on my body…the workload was tough and I dealt with a lot of needy students (for lack of a better word). I was emotionally drained thinking about "my kids" and what they went through on a daily basis. It hurt my heart to see them struggling in school and know that they weren't getting the help they needed outside of school. I just wanted to help them all. To this day, I still think of many of them and it has been four years since my last subbing job ended.
2) My husband and I bought a house. We were living in an apartment building with lots of other people…and smokers and animals. Honestly, even though the animals and smoke were within the walls of their own apartments, I think it definitely affected me negatively. We love our home and couldn't be happier with the location.
3) Also, when I was subbing, I was working two jobs. Subs don't really make much money and I didn't want to get rid of my retail job in case I needed to fall back on something. So I subbed most days and then worked retail 2-3 nights a week and on one weekend day. It was extremely stressful and put a huge strain on my body. When I stopped subbing, I stayed with my retail job for 3 years until last summer when I got a new job in customer service. With this I am able to work 37.5 hours a week and be home to cook dinner. I have a better commute and am able to spend more time on my treatments. And I don't have to take work home and I enjoy my colleagues.
I was going to post my clinic update along with this post, but I am kind of running out of time here. So I will split it and update my clinic visit next time. :)
Monday, April 6, 2015
Why I started blogging
Let me preface this by saying, right now I am in a good place mentally. Prior to this story I am about to tell, I was also in a good place. That's the thing about trying to conceive, no one tells you how difficult and how emotionally draining it can be. In one respect, you can see each new month as a new chance, a clean slate. On the other side, your heart is breaking because yet another month has gone by and it is another lost chance. One day you are perfectly happy and blissful in your life, the next you are depressed and feeling like you're missing out on something incredibly amazing.
A few weeks ago, I got a text from a friend. We haven't seen each other often since she had kids and when I try to make plans, there is always some random excuse (I swear she wrote the book on making up excuses). Well this "friend", we'll call her X works with a woman who has a child with CF. I guess she's not a child, she's an adult now. And it just so happens, I know this family personally, we grew up in the same town and I almost went to the same school as the girl. Well anyway, the texting conversation started off harmlessly, and then suddenly X brings up this family. She did it in a very round about way, almost like the only reason she texted me was to talk about this family. We were talking about one thing, then she sends me a picture of this CF mom's tattoo and starts in on how the daughter with CF gave birth to a little girl a few weeks ago. The text went like this "I will tell you this because I want to give you good news, but I hope it doesn't hurt. Her daughter made it through pregnancy and had a healthy baby girl yesterday. S said for someone who was told her daughter wouldn't live past her teens, wouldn't get pregnant, wouldn't carry to term, just had a girl and I cried for you because because I miss you and because of all you go through and how strong you are and how much my heart hurts for you."
When I first got the text, the only part I saw was her daughter made it through pregnancy. At first, my heart broke because I thought maybe she got sick after the birth. Any number of things could have happened. I realized quickly that was not the case. But at the same time, all I could think about was that first part. About the birth. I cried for myself, and for my family…who is missing out on the love of having children. In my heart, I wanted to be happy but I was so envious I couldn't think about that. Little did X know how much this news really did hurt. I think it physically hurt my heart because it wasn't my turn. Each day gets easier, but each day gets harder.
Now as I am typing this post out, I realized what X said in the second part of that message (the non-italiscized part). I think I was so blind to the fact about the baby being born that I literally didn't even see what else was in that message. Here I am, angry, sad, and upset that yet again it wasn't my turn…I didn't even see the love in that message. Honestly, as I went back to read it today, that part wasn't even in my memory at all. I am glad I went back to read the message, I just wish it hadn't taken me several weeks. I am grateful for loving friends and I hope that one day we will be able to spend more time together without making excuses.
Wednesday, April 1, 2015
Well, I suppose my first post should be an "About Me".
I am 31 years old born and bred New Englander, which means, I love the snow and I love the ocean. But I will still feel compelled to complain if the weather is one extreme or the other. ;) Currently we are eagerly awaiting spring…with snow still on the ground!
I was diagnosed with Cystic Fibrosis when I was six months old. I was listed as failure to thrive, meaning I wasn't gaining weight and was getting sick because of that. I have lived the last 31 years to the fullest and I intend to do the same with all the time I have left in this world. I have had moments of illness over the years, but I have been blessed with relatively good health for the last three years. I graduated college in 2006, worked for several years as a substitute teacher and then changed careers to customer service. It has helped my health immensely to be away from lots of sick kids. In that time, I also got married (4 years this month) and my husband and I moved from a small apartment to our first home. We've been here for 3 years.
We are currently trying to conceive our first child with some difficulty. I have been off birth control for almost three years and nothing has happened for us yet. We have seen a fertility specialist, had all the tests and were able to do 2 rounds of IUI with no success. Our insurance will not pay for more IUI's and we aren't sure we are financially or mentally ready for the next step. So we decided to take a break for a while and plan our dream vacation! We are hoping it will take some stress off of trying to conceive and maybe later this year or next we can begin treatments again.
This blog will be mostly about those two important parts of my life and any other ramblings I may feel like sharing. I hope you enjoy reading!
Aside from those tidbits, I love to read, knit, crochet and I got a sewing machine for Christmas. I love to make people happy with my craft skills. I also love to cook and try new things. I have even gotten my husband to enjoy his vegetables!
I am 31 years old born and bred New Englander, which means, I love the snow and I love the ocean. But I will still feel compelled to complain if the weather is one extreme or the other. ;) Currently we are eagerly awaiting spring…with snow still on the ground!
I was diagnosed with Cystic Fibrosis when I was six months old. I was listed as failure to thrive, meaning I wasn't gaining weight and was getting sick because of that. I have lived the last 31 years to the fullest and I intend to do the same with all the time I have left in this world. I have had moments of illness over the years, but I have been blessed with relatively good health for the last three years. I graduated college in 2006, worked for several years as a substitute teacher and then changed careers to customer service. It has helped my health immensely to be away from lots of sick kids. In that time, I also got married (4 years this month) and my husband and I moved from a small apartment to our first home. We've been here for 3 years.
We are currently trying to conceive our first child with some difficulty. I have been off birth control for almost three years and nothing has happened for us yet. We have seen a fertility specialist, had all the tests and were able to do 2 rounds of IUI with no success. Our insurance will not pay for more IUI's and we aren't sure we are financially or mentally ready for the next step. So we decided to take a break for a while and plan our dream vacation! We are hoping it will take some stress off of trying to conceive and maybe later this year or next we can begin treatments again.
This blog will be mostly about those two important parts of my life and any other ramblings I may feel like sharing. I hope you enjoy reading!
Aside from those tidbits, I love to read, knit, crochet and I got a sewing machine for Christmas. I love to make people happy with my craft skills. I also love to cook and try new things. I have even gotten my husband to enjoy his vegetables!
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