HOT, HOT, HOT

This weather is just killer. I don't have any energy to get stuff accomplished…and I really don't feel like working or working out! ;)  My house is a mess, I really hope no one stops by because it just ugh.  I need to do laundry, but its in the basement and I hate lugging it all down there and then bringing it back up and folding it.  I'd much rather have snow piles up to my ears…well I may not exactly be ready for this again…but I'd settle for under 90 and lower humidity.

This is the view from sitting in my car after one of our many snowstorms this past winter.  It was literally up to my shoulders.  My city was supposedly labeled, "the snow capital of the US".  It was a pretty extreme winter.

Of course, last week after my post and after my great update at the PT…I ended up with some moderate belly pain one evening.  I called CF clinic the next day and they sent me for an X-ray the same day.  Apparently I had a "lot of stool" built up in my colon.  So I was feeling pretty awful for a few days while that passed.  In the midst of that, I started coughing more than my norm.  So I called the doctor again on Monday.  They must be so sick of me!  LOL.  I am still feeling pretty bloated, but the pain in my belly is gone.  I also started Cayston (an inhaled antibiotic) for my cough.  So far it does seem to be helping.  I'm bringing up more junk and my cough doesn't seem as tight.  

Other than this heat, I really can't complain.  Our garden is looking awesome!  I'm spending a lot of time crocheting or knitting.  I have tons of friends and a coworker having babies lately.  So lots of small projects.  I'll try and do a whole update on that later with pictures.  I am so proud of (and in love with) ALL the things I make.  As much as I hate to give them away, I know they are going to good families who will appreciate them.  Some things I've made of late…lovey blankets (my new favorite thing, so quick and easy to do…and adorable), head bands for baby girls, large blankets, hats of course.  I have been slowly working to clean out my craft room and it really seems to be helping motivate me to craft more and use what I have!  Its a slow process, but when I feel motivated, I'll clean for a half hour or so and so far it looks really good.  The crafting is a cathartic thing for me.  It keeps my mind occupied while also relaxing me at the end of the day…as long as I'm not too tired.  Its like free therapy!  And crocheting and knitting can be done in front of the tv, so I am still spending time with hubby too.  

Miscellaneous Updates!

So I went for my 8 week PT check up yesterday.  At least thats how long I think its been since my initial visit.  I was there about a month ago right before our cruise, but when I started this process it was a few weeks before that.  So he said I am doing phenomenally! I was so happy to hear some good news.  It was a rough morning at work since I only work the half day on Tuesdays and we were busy.  And I was in a rather iffy mood.  I don't get to the gym as much as I'd like, so I thought I wouldn't be seeing any improvement.  It came as a bit of surprise at how excited my PT was for me.  He is very encouraging and always has an uplifting way of looking at things.  When I said I wasn't going as much as I wanted to…he said "but its so much more than you were doing."  And "you have to start somewhere, you'll work your way up to more".  And when I said that my family was ragging on my because I couldn't remember the exercises…he said "screw them.  don't let them get you down."  LOL  Funny thing is, I was thinking the same exact thing, but he said it before I could!

So far I am still loving it!  Last week, I went to the gym once and did cardio and weights.  Then Saturday, I went for a walk with a coworker after lunch. Of course I didn't have the right shoes, so my hips were a little sore after the walk.  It was pretty hot all last week and exercise was difficult even in the AC'd gym.  I had to keep slowing down on the treadmill to catch my breath.  But overall, I am doing pretty awesome.  I did cardio at the gym on Monday this week, skipped my weights because I knew I'd be doing those the next day at the PT office.  AT PT, we went over another set of exercises to do, a little bit of a step up with the intensity.  They are exercises I can work into my regimen and they are things I never would have been able to do when I first started this process.  Planks on an unstable Bosu Ball, staggered push-ups (yes I can do real push ups now too!), weighted push ups, step exercises.  So excited to start working these into my routine!

I had my CF clinic visit with my doctor last week…I go there every three months.  PFT's are stable!  I think the number was exactly the same as three months prior…haha.  Hows that for consistency? If you've ever done these tests before, its pretty difficult to get the same exact number because they make you do three (or more) tries.  I was able again to speak with the dietician.  I have been having some digestive issues, especially at cookouts lately.  I will eat something crummy, but oh so yummy, and almost immediately will get very bloated and uncomfortable.  I have never really run into this before, always been pretty good as far as CF tummy issues.  Dietician suggested staggering my enzymes a little better…maybe take two when I start with appetizers, then if I am still eating 90 minutes later, I can take some more.  Again, I've never really had to adjust my enzyme dose very much.  My prescription is for 4 pills with meals and two with snacks.  And sometimes I don't even take them with the snacks.  So I will have to keep that in mind when I am at my friends cookout this weekend and see if it helps.  I also asked her about snacking for/or after I go to the gym.  This is an ongoing issue with me.  With CF, we use a lot more energy than a "normal person" just to breathe…so we need to snack more often.  Not to mention our bodies don't digest the foods we do eat, so we aren't able to absorb the nutrients as well.  When I go to the gym, that urge is even greater…especially right after and into the next day.  I've been doing yogurts (go me!) even though I am not a huge fan of the texture, I've been doing it because I know that is a better snack than cheez-its or ice cream for example.  The other interesting thing she suggested is to buy a big bag or pack of raw almonds and make my own "100 calorie pack".  So this way, I don't have to pay for the pre-made individual packets which are always so much more expensive.  So I had my mom grab some with her wholesale club card.  I am going to try roasting them and salting them, then freezing them in plastic bags in about a 1/2 cup increments.  I also really enjoy cottage cheese and crackers as a healthier snack.

Of course my doctor asked about updates on our trying to conceive efforts.  We are still trying the normal way for now.  My husbands new insurance doesn't kick in until August 1, so we are hoping (if we don't get preggo before) to go back to the fertility treatments sometime after that.  I started a few new vitamins that are specially formulated to help woman trying to conceive.  I hope they aren't hoaxes…haha…but the reviews on Amazon were very good.  Don't worry, thats not the first place I heard of them.  I have some online forums where people use them and they do come from a legit place. I wanted to look at the reviews on Amazon because it was different than the company that makes the meds.  Meaning the reviews would be more abundant and less fabricated.  I'm also trying the grapefruit juice thing.  I have tried this in the past, but I don't think I was consistent enough in drinking it and I don't think I drank enough each day of my cycle.  INSERT TMI: For those that don't know, it is supposed to thin mucus, making it easier for spermies to reach and fertilize the egg.  It may be an "old wives" tale, but at this point, if you told me to stand on my head for an hour after doing the deed…i'd happily do it.  LOL.

So once our insurance kicks in, I will have to call them and check on fertility coverage.  Depending on what they cover, and what the copay is, we will move forward. We also both have secondary insurance because of our disabilities, which our original fertility clinic didn't accept.  Because of this, we couldn't proceed with IVF at that time.  The copay would have been pretty steep.  So IF our first insurance has a smaller copay for IVF, we can go back to our original clinic and start right away.  If the new insurance still has a high copay, I will have to call our secondary insurance and see if they have fertility coverage, which they probably do not. At that point, we'd probably try a few more IUI's with the new insurance, since those copays are usually smaller than IVF.  If they do have coverage, we may have to look for a new clinic that will accept the it.  I don't know if I've said this before, but we are very lucky to live in MA because it is mandated that private insurances cover some form of infertility coverage.  It is a proven medical issue.  But our secondary insurance is like medicare, so not sure about that.

Clinic PT visit

So I have been meaning to write about this for a while now.  Ever since I started at the adult CF clinic about 2 years ago, they told me part of their routine was meeting with a PT once a year.  They didn't want to bombard me at first with all of their policies if it wasn't necessary and if I didn't have days off.  But I finally went to meet with the PT (he specializes in CF care) at the hospital where my clinic is back in February or March I want to say.  Long story short, I didn't realize how weak some of my muscle groups are.  Shoulders and hips for one.  At that point I hadn't been to the gym in a few years and rarely did any walking.  When I had my old job…I at least walked around the store and NEVER sat down.  Moved things around the store, so at least that was some form of exercise.  My job now, I pretty much sit down all day.  So I am going to just outline what these visits with the PT have entailed one by one.  Because since that initial visit, I have been back to see him twice more.  Insurance pays for it, so why not.  And with my new gym membership, I really would like to have more exercises to do in my arsenal while I'm at the gym.

Visit one:  I can't remember if I blogged about this or not, so I will just briefly go over what we did to the best of my memory. We talked for a while about how much I exercise, how healthy I am CF-wise, and my daily routine of CF care.  He did some strength tests…you know the kind where you push against his arm and you have to keep it stable.  Or raising my arms above my head.  Different stuff.  I then did a treadmill walking/jogging test.  In addition to having weak shoulders and hips, we realized I have pretty low exercise tolerance despite having high (for a CFer) lung function.  Its a good thing that my lung function is so high…we can work with that.  From what he said, its easier to increase exercise tolerance with higher lung function than it is with lower function.  I hope thats coming out the right way. So we left that meeting with an agreement to go to the gym more often.

Visit two:  At the first visit, my PT said to email him with any questions and if I felt like it, I could email him monthly on my progress.  So after a week or two at the gym, I emailed him.  I told him I'd met with a trainer at the gym and went over some exercises to do, but that I wasn't too happy with what he had shown me.  The gym trainer was not all that knowledgable and only showed me the bare minimum.  So the PT emailed back and said basically that I needed a more comprehensive program to strengthen ALL my weakened areas.  So he offered to have me come in and he'd show me different things.  He broke it down into sections, upper, lower and core.  We did three different exercises for each area, two reps of each.  It was about a 45 minute workout.  And while I was doing it, I could definitely feel my lung junk loosening up!  My cough was more juicy and I was able to move stuff around!  I was instructed to go to the gym 2-3 non-consecutive days per week…do 15 minutes of cardio to warm up, then go through that routine we had done at clinic.  I won't go into all the exercises because they were tailored towards what I need.  Another CFer may need something different.

Visit three: We did pretty much the same thing as visit two.  Although he added a walk test.  I walked up and down the hall for 6 minutes and he measured how far I walked.  I think I failed this part pretty bad!  LOL.  And it was not for any specific health reason…I could have gone faster/further but its really awkward walking up and down the length of a hospital hallway.  *shame*  So after the walk test…he showed me another set of upper, lower and core exercises.  So now I have 6 upper exercises to choose from, 6 lower, and 6 core.  I am instructed to choose one from each area, do the exercise, repeat once…then choose another set, repeat, then another and repeat.  So all in all, on one day at the gym…I'll do my 15 minutes of cardio, then I'll do three upper exercises, three lower and three core.

I'd highly recommend this to any CFer who is looking to increase exercise ability.  My PT knows what he's talking about, is knowledgable and experienced and he loves what he does!  He's so easy to talk to and I really hope that I can start to see results soon like some of his other patients.

Back to the Grind

Apparently its been a while since I posted!  Wooops!

Last time I posted that I had an awful week as far as exercise goes.  Well the last two weeks have been even worse…but for good reason.  Husband and I went on VACATION!!  We took a cruise to Bermuda.  It was fantastic.  There was only one day (the very first day at sea) that had bad weather, and bad sea sickness as a matter of fact.  It was lovely.  Actually, the seasickness wasn't too bad, it could have been worse, but I did definitely feel the 7-12 foot wave swells and just had to kind of lay low that day.

I think with the whole build up  to the vacation and then the actual vacation I was so exhausted/relaxed/happy that I didn't really feel like exercising.  I did not want to use the ship's gym because it probably rarely gets cleaned and the PT I've been working with was totally ok with that.  My plan was to maybe do some stuff in our cabin the week we were away, but that didn't happen.  The whole week prior to the cruise was spent getting ready, cleaning the house, doing all the laundry and packing…and then of course I couldn't contain my excitement.  So by the time we got on the cruise I was ready to chill and do nothing.  And relax.  Sit by the pool, sip a few drinks, eat a lot of food.  Honestly, I didn't feel like doing much else.  I don't know if this is a CF thing (as far as the exhaustion issues) or just a normal vacation reaction.  I don't necessarily regret the cruise, we are already talking about when we can go on another, but I wish we had participated more.  Gone to more shows, played more games.  But then again…we went on this vacation to sit in the sun and relax and eat good food (there is SOOOOOOO much food on these ships, OMG).  By the end of the day we were wiped out just from that, so we would go back to our cabin and sit on the patio enjoying the sounds, sights and smells of the ocean.  Or we would walk around on the top deck of the ship and enjoy the sunset.

But I need to get back to the gym.  That will happen today.  I promise.  After I go to the craft store, a very dangerous place if you ask me.  ;) I was going to go to the gym over the weekend (we came back early Friday morning), but again, I was still so exhausted and had more chores that needed doing.  I don't want to make excuses, but I need to make sure my body gets enough rest so that I don't end up getting sicker than I am.  I did come down with a cold on the cruise which is not surprising to me. There are 3,000 people aboard the ship and we did *gasp* eat the buffet several times for breakfast and lunch.  I tend to shy away from buffets because of the germs and dirty little hands that reach over the counter, but I couldn't really help it.  The buffet (and all other restaurants on the ship) were delicious and when you are sitting out by the pool its much easier to run into the buffet for a quick bite than to go back to your room, get dressed, and go to a sit down restaurant.  So anyway, I don't think the cold has gone to my lungs, but there is still a ton of drainage from my sinuses and a terrible post nasal drip type cough.  I have to call the clinic for a refill on something today, so I will run it by them on how to proceed with the symptoms.  Honestly, I think once I start exercising again it will get better.

I mentioned earlier that I have been meeting with a PT at my CF clinic.  I will blog in more detail the things we've been going over because I think it deserves its own post.  But if you have the opportunity to meet with a PT that specializes in CF Care, I'd HIGHLY recommend it.  He has been fantastic and really knows his stuff.  We are very lucky at my hospital to have him!

I will leave you with some of my favorite pictures from our week away.  And yes there will be dolphins.  :) They swam alongside our boat for a while on our very last day at sea!  Pretty exciting!

This was our last sunset in the port in Bermuda. We had one more full day (we left at 5 pm, so we missed that sunset).  *sigh* It was just stunningly gorgeous!

The view from our room while we were cruising.  I seriously could sit and watch and listen to the ocean all day.  I am definitely an ocean lover.

Pulling into port.  I believe we circled the island so that we could get some pics. It looks stormy in this shot, but it actually turned out to be a really nice day later on.  We docked around 11 am and I think by 1 pm it was sunny and warm.

We went on a wheelchair accessible bus tour.  Unfortunately, we didn't really have time to make many stops, but the tour was definitely worthwhile.  We got to learn a lot about the architecture, history and the beautiful beaches.  This beach was also down a large hill, so would have been inaccessible for a wheelchair.  There was a small accessible beach near the dock that we went to one day also.

Eeeeeekkk!!!  <3 <3 <3  

A gorgeous sunrise from our balcony.  As you can see, the seas were very calm when this shot was taken.  

Exercise Update

Well last week was pretty awful!  :(  I almost didn't want to even post my update, but what would be the benefit if I can't see the weeks that I am not doing well.  Right now, I will be able to look back and see why I didn't go to the gym much last week, and hopefully change that for future weeks so this doesn't happen as frequently.  (Looking back, I guess I did better than I thought I did…I still went three times last week).  Ironically, I can keep track of my exercise routine on my fertility app!  So I type in what I did and then I can go back and see.  For those that don't know, these fertility apps help you to track ovulation and your period so that you can plan baby making around the right times of the month.  You can add in your emotions on a certain day, whether or not you did the deed, answer questions about your cycle, track your temperature (which helps to pinpoint ovulation..or when the egg is released and ready for fertilization) and a number of other daily activities.  It really helps to keep everything handy on one app.

Sunday (May 17):  30 Minutes of cardio and 20 minutes of weights.

Monday: 30 minutes of cardio

Thursday: 30 minutes of cardio and 20 minutes of weights.

So now today is Tuesday and I am feeling down because I haven't worked out since Thursday.  My reasons will probably be lame excuses, but I am attributing it the holiday weekend.  Fridays are difficult because its the end of the week and I am wiped out by then!  And I prefer to go every other day, don't want to exhaust my muscles too much.  Eventually, maybe I will be able to go more days in a row, but I don't want to burn myself out.  Saturday, I wanted to see my cousins new baby.  *sigh*  I love baby snuggles.  Since Hubby and I are going on vacation soon, I wanted to see the baby before we left because who knows how long it would be before I got another chance.  Not to mention I like to bring new parents a nice meal and if I wait a month, its not as meaningful, I would think.  Sunday was just a huge cookout at my Aunts house.  Again, its my only day to sleep in, so if we have plans, I can't always fit gym time in.  And yesterday, I think the gym was closed.

But today is a new week!  I had emailed my PT at CF clinic two weeks ago to update him on my exercising routine.  I told him I have been doing cardio, shoulders and abs…and he was kind of like you should be doing more strength since you also have weak hips, legs and basically everything.  LOL.  *insert shame face*  So he offered to help me figure out some good activities for everything and added bonus…its covered by insurance!  So I am working a half day today and going in to see him this afternoon.  He says he will be able to show me all types of exercises and weight training to strengthen my whole body.  I hope this session is as helpful as I want it to be and that its not a waste of my time.

Exercise Update

Sunday (May 10):  15 minutes of weights.  This was my ab and shoulder work. Then I also did 25 minutes of running on the treadmill.  I alternated 5 minute warm up, 5 minutes running, 5 minutes slower, 5 five minutes running and then a 5 five minute cool down.

Wednesday: 15 minutes weights, ab and shoulders again.  And again 25 minutes running/walking on the treadmill.

Thursday: 40 minute walk along the river after work.  It was a gorgeous day!  A coworker and I brought sneakers and walked after work.  So I was walking and talking for 40 minutes.  Walking and talking has always been difficult for me as I get very out of breath.  I am hoping with all this exercise, that will get better.

Friday:  15 minutes of weights, abs and shoulders.  And again 25 minutes of running/walking.  Today I was able to do 7 minutes of straight running, then a few minutes slower, then another 5 minute running spurt.  So in total I ran at speed 4.0 for 12 minutes!  My distance in still pretty low, I think I hit 1.3 miles or so.  I'd like to work up to be able to do a 5K distance.  Not sure if I'd ever actually do a 5K, but maybe if I can gain some confidence, it will motivate me to register for one.

Sunday: TONS of yard work.  I consider this exercise because I was super sweaty and salty by the end and I was getting out of breath.  I was lifting plants, shoveling dirt, picking weeds, spreading mulch and raking.  But I am happy to say it was worth it because our yard looks perfect!

Unfortunately, I did not do before and after pics, wooops.  And I did not plant EVERYTHING in these pictures yesterday, but I did do a lot of work.

In this picture, I only did the plant on the very end of the house, you can barely see it, but it'll probably come back stronger next year.  Its difficult to see, but it is a lilac bush!  I adore lilacs and LOVE the scent.  I debated whether to do this one in the front or the back, because we will more often sit in the back so I think I'd have enjoyed it back there.  But husband said we already had too much out back! I will settle for this being outside my bedroom window!

In this picture, I laid out the raised garden bed.  Again we debated where to put this because it is vegetables and will need full sun.  This seems to be the sunniest spot as we are surrounded by trees in the back and bushes on both sides of the yard.  It doesn't appear sunny in this picture, but this was taken late in the day around 6 or so.  I also spread the mulch around the patio and planted that gorgeous blue hydrangea.  I have another on on the other corner from last year that hasn't quite come up yet.  I also moved the hosta (thats the plant you can see straight ahead in the opposite corner).  Because of where we placed the vegetable garden, that plant was blocking an entrance to the patio.  Those come back heartier and heartier every year!  ((it only kind of bothers me that our patio is no longer symmetrical))

The vegetable garden has only a few plants for now.  I want to start small and if this works, then I'll add more next year.  We can always buy more of those wooden beds.  So for now, we have a tomato plant, eggplant plant and zucchini.  The marigolds are there to keep out animals. And there are two potted plants (with I think geraniums) on the front steps and two on the side steps (with full sun/hearty impatiens) for some color in the front of the house.  There is also a hanging plant near the side entrance/driveway.

Mother's Day

I wasn't going to post about this day because honestly I didn't/still don't know what to write. I wasn't expecting to have such mixed emotions, but as the day got closer, it was harder and harder for me to grasp and I don't want to be a "debbie downer" all the time on this blog…but hey, this is what I started the blog for.  I needed an outlet for my feelings when a therapist or social worker is unavailable.

I am not a mother yet.  I have wanted to be a mother since like forever.  I always wanted to take care of my little cousins and I begged my parents to have more children so I could snuggle babies (they didn't listen of course…and I only have one sister).  I love looking at baby equipment and if I do get pregnant I pretty much have my whole nursery picked out.  I dream of the day that I can start knitting or crocheting projects for my baby.  I don't want to start now, because I feel like I may jinx it in some way.  I have not purchased anything for my own future children because it would be too heartbreaking to have in the house.  I love to nurture and help and I want to be able to watch my own children grow, not just other peoples kids.

My mom lost her mother at a very young age.  My heart breaks for that.  Although I may not say it to her, I am incredibly grateful to still have my mother around with me.  And also my paternal grandmother.  We are all very close.  My sister and I spent the day with mom, thats all she wanted.  We weren't supposed to spend money on her, just time.  We took her to lunch and then went over to my grandmothers, where my dad and uncles were helping Nana. Nana (and our family in general) has had a difficult few months and it was lovely to see her and just talk.

So overall, I did have a nice Mother's Day.  It is the start of a new month of trying to conceive, of new hopes that this will be the month.  And if not, in the words of Tom Petty "I won't back down".  I will not give up.  My husband starts his new job in a few short weeks and if we still are not pregnant the normal way, maybe we can go back to fertility treatments as soon as our new insurance takes effect!