Infusions

Not much to report, still feeling pretty good, just some slight muscle soreness in the knees and fatigue. I got a call yesterday and my infusions are scheduled for April 12 and 26, which great as it means I got approved for funding for them. Now I'm just getting ready to go to Iowa :) Home sweet home! In my opinion... exactly what the doctor ordered! :) It's amazing to think that over a year ago I couldn't even comprehend traveling in a car for 5 hours, and now, no worries! :) Grateful for what I have accomplished and look towards hope and guidance as what I am to accomplish in the future.

 

And we're off...

So I have officially reached day 5 of my prednisone withdrawal and good news is that I haven't had any fevers. I'm so excited about this that I can hardly stand it. Last summer when I went down on prednisone I had fevers ever day and muscle pain. Well today I woke up and took a walk outside if that is any indication of how my muscles are feeling. My walk is slow, but hey, its exercise! :) Someone asked me the other day how my "lungs feel" and I guess the best way I can describe it is after I do any sort of exercise... even go up the stairs, it tends to feel like I was under water holding my breath for a really long time... you know that uncomfortable burning feeling. We're hoping this will only get better as I continue to exercise my "lungs." I also did a little pilates today... it was probably the funniest thing, but hey... its a step in the right direction. I'm looking for a low impact way to gain muscle... any ideas? e-mail.

20 mg. prednisone, Iowa, and peep martinis :)

So... day two of declining on prednisone and so far things haven't been too bad. I'm a little bit more fatigued and my knee muscles are sore, but no fever and no extreme muscle pain... we'll see how the rest of the weekend goes though! :)

Good news... I keep having to go to the bathroom, kind of personal, but ya know that means the fluid is starting to come out of me :) and that is just awesome!

Another huge accomplishment as I am able to keep walking with the encouragement of Chris by my side. The walks range from 15 minutes to 30 minutes (with some breaks in the middle to catch my breath). Its been great to enjoy the sunshine outside :)

We have a big week next week which we are excited about. My sorority sister Trisha and I are having an American Idol night on Tuesday... although neither one of us can get into this year :( and then Thursday we head down to Iowa to my parents house for Easter weekend, with a little stop in Cedar Rapids to have dinner and celebrate with Molly and Neil. I haven't been home for Easter since I was a sophomore in college... can hardly wait. My mom and I are already planning on having peep martinis :)

Here's the recipe if anyone wants to try it :) I'll let you know how it goes!

1 oz limoncello
1 oz raspberry vodka
1 tsp frozen pink lemonade concentrate
1 pink peep

Mix the liquid ingredients in a shaker with ice, pour into a martini glass. Don’t forget to float the peep.

Friday Thankfulness:


1... Being able to go down to 20 mg. of prednisone
2... Randome phone calls from my brother
3... The thought of going home next week :)
4... EASTER!
5... Home cooked meals
6... Oatmeal raisin cookies
7... Date night with my husband
8... SPRING WEATHER :) and walking outside
9... Wedding talk with Molly
10... Sorority sisters

Another infusion in the works...

Just returned from my doctor's appointment, I finally get to go down to 20 mg. of prednisone! :) WOOHOO! All of my levels are hovering right above the normal levels, which is good, but not great. My doctor sent in the paperwork for me to start another infusion of Rituxin. We are going this route for now, as the other drug, Actemra, they haven't quite worked out all the kinks in regards to dealing with shipping and insurance companies. So, two 6 hour infusions are in my future! :)

The good news is that all of my joints are checking out really nicely, and even though I've gone down in prednisone, I haven't gotten weaker, which is a great sign in regards to my muscle disease.

There are signs of my disease starting to act up again, i.e. rash on my eyelids and knuckles, raynauds starting to show again, and my white blood count is going back up, but hopefully we'll get the infusion and not have to go back up on prednisone.

There are still issues with the lungs, and I'm now looking into other pulmonologists. We're unsure if my lung capacity restriction is because of my disease or weight gain of my prednisone... more to come on this matter.

So the next few days will be rough but hopefully by Monday I'll be back to my normal "self." I'm looking forward to seeing if my face deflates at all from the prednisone, as so far it hasn't.

So that's the good news (well in our world) for now, hopefully nothing crazy happens with my blood test results, but it is me, so you never know! I tend to have the best of luck sometimes! :) More updates to come later, but as of right now, we're feeling good! :)

Day 3...

So Day three is upon me and... NO FEVER! :) Knock on wood, but so far so good in regards to coming down on prednisone. The only things I've had are some headaches, fatigue and slight muscle soreness above my knees... I'll take it. Chris and I keep waiting for the ball to drop, but hey maybe my body is just as ready as I am to get rid of this prednisone! :)

So I've been taking lots of baths with epsom salts... totally recommend it for people with any muscle soreness. But also, today I took a bath with one of my Blissful Bath fizzy balls (its a bath store we have here in Eagan). Chris and I have become obsessed with them... they have such neat stuff. Anyways, I tried the fizzy ball "Oh my aching muscles." Totally recommend it... not only are my muscles relaxed and calm, but my skin feels amazing. It does turn the water green... so I kind of felt like a wicked witch melting but follow this link if you want to check it out http://www.blissfulbath.com/view.php?c=bathe&p=bombachymuscles.

One hurdle jumped...

Well... I accomplished a little hurdle this past weekend. One of my sorority sister's is getting married and she had her bachelorette party here in the twin cities. I was super excited about it, I would get to see some girls I haven't seen since my wedding! Although I had major feelings of being excited, unfortunately leading up to it were feelings of utter nervousness. Like I said... I hadn't seen these girls since my wedding... so 50 pounds and a bloated face later, my self esteem hasn't been too high. I know they don't care, but its a personal or as Chris would think "girl thing."

It was really hard for me to muster up the courage, as its always easier to just not go and hide under the covers. I even wore a dress, which hasn't happend in nearly a year. Its so hard getting ready these days... nothing fits right and everytime I look in the mirror I want to cry. I know its only temporary, but it doesn't make things any easier. Chris is amazing, telling me how great I look and everything, but although his words help, its how I feel inside that I just can't change until my "normal" face is back.

So, driving into Minneapolis I was really nervous, but once I got to the party all of my nervousness faded. It was SUCH A POSITIVE BOOST of energy to see old friends... all of my insecurities immediately left. I almost completely forgot I was "sick" quite frankly... until we started walking to the restaurant. That was a little stretch for me, but I did it. By the time we got to the restaurant my lungs were on fire and my legs felt like rubber, although it was only a few blocks. Luckily for me, I have learned to just stand in the corner and breath slowly through my nose to calm down my breathing. It takes about 15 minutes, but as long as I don't spaz out about not being able to breath properly, its something I can easily deal with.

I had to leave around 9 pm, due to medicationg and such, but it was so great to see everyone and have a distraction. Although leading up to it I had a lot of insecurities and was really nervous, I realized I was surrounded by people that didn't care what I looked like, just as long as I was me. So... one hurdle jumped.

Chris and I were able to walk outside again today. The breathing is getting a lot better, I only had to stop twice and they were only for about 2 minutes. Chris keeps saying "baby steps." I'm starting to get antsy to reach the toddler stage. I know patience is a virtue, but I'm going on a year and a half now... you can see why I would be ready to go. After the walk, my muscles were sore so I ended up taking one of my "epsom" salt baths. This is great for anyone dealing with muscle soreness. Its become my life saver in the past few months. After that, I started to feel the fatigue of the weekend and did have a little low grade fever, luckily it only lasted for about an hour and a half.

Big doctor appointment on Wednesday... a little anxious about it. Hopefully I learn more about what the next steps and will be able to go down to 20 mg. of prednisone! The day I'm completely off prednisone I'm throwing a party... just you wait! :)



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My mom is the best...

So its been kind of crazy week. Unfortunately I was feeling a little under the weather last weekend and by Monday morning I was calling into the doctor. I ended up having an infection, which I suspected and they put me on antibiodics right away. Unfortunately, those didn't really kick in until Wednesday. So Monday and Tuesday night were the worst. Both nights I didn't fall asleep till about 5:00 am... not fun. Luckily Wednesday night I was able to fall asleep around midnight and slept all the way until noon. Much needed R&R.

I wasn't able to do to much the past three days, but luckily my mother-in-law (who is amazing by the way) and Chris' sister and her husband brought over food and company on Wednesday. It was so nice to have a home cooked meal without the work. So thankful.

So yesterday, I finally started to feel better and we were able to go visit my sorority sister, Nicole and her husband. So much fun. It was so nice to get out a house and Nicole and her husband are such a breath of fresh air. Thank you so much for having us! It was great for both Chris and I to get our mind off stuff and just enjoy company of a great couple!

So today is my mom's birthday... in accordance with my Friday thankfulness she has to me one of the most thankful things in my life. I don't know what Chris and I would do without our parents, but especially my mom. Everytime she comes up she's cleaning stuff and organizing and making meals for us to have on hand for weeks. But most importantly, she has been there for support from the very beginning. My mom has always been my best friend, but these past few years our relationship is only grown and we've only become closer through this situation.

My mom is one of the most incredible people I know. She has one of the best attitudes and she exhibits the grace and beauty that I hope to achieve some day. I have found that all of moral values and convictions have clearly come from my parents and I hope some day that God grants Chris and I with children and if I could raise my children just like my parents did with me and my brother, I would be outperforming. One of my favorite qualities about my mom though is her ability to have fun. To me she's known as Mom... to her grandchildren she is known as Gaga.. yes she is obsessed with Lady Gaga... her cell phone ring tone is Just Dance. Two of her favorites songs in life are "Yeah" by Usher and Outkast's "Hey Ya." I don't know what I would of done without her this past year, as she always knows how to make me laugh. Thanks mom! :)

Friday Thankfulness:


1... My mom :)
2... Key lime pie... thanks Nicole! :)
3... Keegan and Mia are feeling better! :) Yeah!
4... 60 degree weather in March :) IN MINNESOTA!
5... Getting to see sorority sisters tomorrow :)
6... Receiving sweet cards in the mail, thanks Marie :)
7... Get text pics of Mia standing by herself! :) Such a happy sight.
8... Late night movie watching with Chris... yes we watched Meet the Robinsons AGAIN last night!
9... My husband... can't say this enough but he has been wonderful this week (as always)!
10... My mother-in-law, she did the dishes for us and helped clean up after Wednesday... HUGE help! :) She is so thoughtful! :)


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Tomato Face...

Okay... so I just have to share the most annoying thing EVER. Pretty sure this is due to the prednisone, but I keep getting "hot flashes" in my face. You'd think I'd have a fever, but I don't and my face gets BRIGHT red... and due to the "moon face" from the prednisone I look EXACTLY like a tomato. Just need a green ribbon in my hair for the stem... yep picture it... you know its funny! :) Although funny, it is becoming ever so annoying and seems to flair up when I get STRESSED or excited. The STRESSED part seems to be happening a lot lately too! Craziness.

Anyways, Chris and I had a nice, relaxing weekend without ANY hustle or bustle. We were able to walk outside two days in a row and it felt great. I walked about a half mile or a little over and only had to stop for a couple of moments to catch my breath. But overall, my body is feeling "okay." The BIG doctor's appointment is in a week! Crossing my fingers...





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Fever today... down for the count!

So unfortunately, I woke up this morning with a low grade fever and muscle aches... also some congestion. My whole family was has encountered the flu, etc. and I think it might be taking a little toll on my body as well. Laying low today, which is a bummer as I was suppose to meet a sorority sister for lunch! :( No fun.

I've been having a really hard week, so this just tops it off. Its been really hard for me this week not to get "negative." I feel that the drug prednisone although has helped, it still hasn't helped me enough so that my lungs are doing better... with that frustrating news from Monday, I just look at myself and begin to cry. The effects the drug has had on my body are just unruly. I feel that everyday I find a new stretch mark (striae). This use to not bother me too much as it was on my stomach only... Hey... i'm 25 but I'm okay giving up two piece swimsuits. But in the past 2 weeks, the stretch marks are showing up on my upper arms. Its so hard to deal with emotionally. Its times like these I ask myself... is it worth it. Still trying to find the "light" at the end of the tunnel. Like I said... I'm having my first negative week.

I'm fortunate to have an amazing husband... honestly, I don't know how he handles everything. A day never goes by without him tell me he loves me and how beautiful I am. I really hit the lottery when I married him. I don't know where he finds the strength to deal with everything. He truly is one the strongest people I know. I thank God daily for putting this amazing man in my life. I wish everyone could see and experience how wonderful he is and appreciate it to the fullest.

I figured I'd end this blog on a positive note!

Friday Thankfulness:

1... My best friend Molly got engaged! So happy for her!
2... The snow is melting... I see cement and grass!
3... MY friends... they're always here for me no matter what.
4... Being able to go home for Easter... first time in 5 years!
5... Painting my toe nails hot pink... first time in a year!
6... Being able to walk 15 minutes on the tredmill.
7... My Rachel Ray cookbook... we tried 4 new recipes this week... they were amazing and healthy!
8... Harry Potter books... if all else fails in cheering myself up, I just open one of them up and it does the job.
9... Tums... enough said.
10... Great family and friends allowing me to do some "work" for them i.e. wedding programs and birth annoucements... it gives me something to do! :)


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Lung appointment

Quick update after our lung appointment today. Unfortunately, the pulmonary function tests from last month are correct with this month's findings. So that means that my lung capacity has gotten worse. Although my blood levels are looking better, the last part of my disease to respond to the medication is always the lungs. With that being said, we are confused... as they have gotten worse since November. We believe that this might be a direct correlation of the increased prednisone use during those months which led to weight gain. I have my rhematologist appointment on the 24th. So we will know more then in regards to the next "treatment" option.

Since the doctor wasn't sure if the decreased pulmonary function was due to my disease, weight gain, or decrease in prednisone, she tests my lung capacity which hasn't occured since my first diagnosis in 2008. At that time I was using 70% of my lung capacity, unfortunately I am now only using 45% of my lung capacity. As you can tell, Chris and I found this news very frustrating and confusing... as through all the medications, tests and trials, and havoc on my body, it seems that the lungs are just not wanting to cooperative. The doctor is not sure if the 45% is permanant or if it will get better upon losing the prednisone fluid and weight--- again back to the trial and error and waiting period.

On the positive side, my heart looks great based on my echocardiogram and my oxygen level is steady at 95. This is encouraging as obviously oxygen is getting to my heart. Hopefully we will have some conclusions on the 24th and decide whether to continue with the infusion, or try a new released infusion treatment.

We thank you all for your continued prayers and support. This has been a very hard year and a half, and although we don't quite see the light at the end of the tunnel yet, we know it is quickly around the corner. It is hard for us not to get "negative" or "down" but we continue to strive on and thank you all for your comfort.

It has been hard to not get frustrated and angry today... hopefully tomorrow we will find peace and clarity with this resolution. Until then...



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Big NEWS! :)

So some big news and decisions occurred in the Hatch household. First... one of my best friends, Molly, called us to tell us she was engaged! Best news ever! Molly has been my best friend since 5th grade! We're so happy for her and her fiance Neil... they're thinking Fall 2011 in NAPA! :) How much fun!
Another big decision that occured was Chris and I decided that this Fall is the time for him to start his MBA. He took his GMAT before we got married, but we have been holding off due to my illness. This is something I have really been praying about and trying to figure out when the best time is. We definately have high hopes that by fall I'll start to get into a "normal" routine. Although it will be hard, as he'll be studying a lot and going to classes, which leaves me by myself, I think this is the best time. He definately deserves this opportunity to improve his education. I'm so proud of him. So yeah... big exciting stuff. Off to the pulmonologist this afternoon. Chris is able to go with me... yeah. I hate this appointment. Hopefully it'll be better than last months! :) Thanks for the prayers! :)
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Pictures from ATLANTA!

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Friday thankfulness...

Friday Thankfulness:


1... The fact that Chris and I were able to visit my brother in Atlanta and had an amazing trip!
2... Hearing Mia go "what's that."
3... Hearing Keegan sing her princess songs... "I knew you..."
4... Oatmeal from Trader Joes.... so yummy!
5... The fact that its 40 degrees right now and the snow is melting... bring on the Spring weather!
6... Thankful for my husband that two friends came over the other night! He was able to have some "guy" time.
7... Talking "girl" talk with my sister in law, Kelly
8... The amazing communication my family has...
9... My pink John Deere sweatshirt... I sweat it is the most comfortable thing... plus I'm representing! :)
10... I'm feeling good "physically"

I've had a really good week in the sense that physically I've been able to do many things. I know I'll never feel back to "normal" but I feel as if I'm close to what my normal is going to be. It seems that what is bothering me know physically is effects from the prednisone. Hopefully on the 25th I can go down to 20 mg.! YEAH!

Emotionally I have been having a couple struggles... as anyone would. It was hard looking at pictures of myself... It's hard to accept gaining 40 pounds in fluid weight when you had no control over it. I'm fortunate my husband and sister-in-law, Kelly, have actually been the most positive ones and the best in dealing with this. I'm lucky to have them as a support system.

I've been kind of stressed lately, which is not good for my condition as it triggers it. So trying to find ways to relax and "de-stress." We've had some "drama" in our life... seems to always be the same people that just think of themselves and their situations that tend to create "drama" or "issues" in our life the past year... I personally don't think they understand our situation entirely. But anyways, prednisone causes me to have high anxiety, mixed in with some issues with some people, and bingo... my emotions have been crazy! Its hard to keep things under control... Chris is more calm about things than I am, even without medicine. I keep trying to ignore the "stressors" and kind close certain people out of my life that tends to cause this anxiety... for whatever reason... they seem to keep puring it on as of lately. Trying to find ways to deal with this, when you have so much other stuff going on in your mind, is hard. Its times like these I'm ready to pick up and move to Georgia or somewhere closer to my family. All the "drama" is in Minnesota... which after 3 years of living here... I still don't like it-- no offense. Hopefully this weekend will bring peace to some issues and I can learn to live and let go. I keep praying to God for advice and to "be the bigger person." But the more I'm the "bigger person" the more it seems other people become "the lesser person." Not sure if that makes sense... needed to vent to myself for a little bit :) A little lonely on a Friday afternoon.

My anxiety is high right now due to my lung appointment on Monday. Hopefully we will have better test results! Fingers crossed...


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Mia's first birthday

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Great news...

So yesterday I had my blood tests to see if my white blood count had risen.  Last doctor appt. it has risen from 15 to 21... this is something that is continually not stable.  Depending on the results, we would know more of whether I would right away need a Rituxin infusion.  Luckily, my white blood count stabilized to 17!  Woo hoo!  Hopefully we'll be able to keep it stable until my doctor's office is ready to distribute the new drug, Actemra.

Another positive side is that Chris and I had a wonderful trip to Atlanta to visit my brother, sister-in-law, and nieces.  We were joined by my parents, and on Friday, Kelly's mom and step-dad.  It was a great celebration of little Mia's first birthday.  It amazed me how much both girls had already grown since Christmas.  Mia continues to shake her hands and make the "o" face and little Keegan is growing to be such a nice little lady.  She is really starting to showcase a sweet personality.

Funny story with Keegan, my brother taught her to sing Jason Aldean's "Big green tractor."  It is the cutest thing... of course her version is "take a ride on papa's (my dad) tractor."  Keegan was also able to experience her first "Papa Princess Date" of which she got to go to Target and pick out a toy.  Don't worry... she was decked out in a tiara and dress.  This is a tradition carried over from my dad's dad, where he use to take us on secret missions... too cute.

It was great for Chris and I to relax with family and "get away" from everything.  I did surprisingly well on the plane, with only a little anxiety and cramping.  Overall I've been feeling pretty good!  Hopefully it continues as the month goes on!  Thanks for all the prayers and positive thoughts!