been awhile

I just updated my carepage... figured id "cheat" and use it to update the blog too... I should probably update this more often too. I have som funny things Ive seen

I know it has been awhile since the page has been update and lots of you have been so wonderfully been asking how I have been doing, asking what’s been going on, how can you pray for me ect… and well its really hard and complicated to keep a care page updated when you have chronic illness because there is ALWAYS something, and I mean ALWAYS something whether its thrush, ear infection or having stress fractures in your feet. It also gets tiring writing about things because it’s a constant reminder to me of how sick I really am, and well that’s no fun. But here I am updating the page because well there are things to update you all on and I appreciate all the wonderful support that you give me – and well things are rough now and we could use an extra dose of lovin & prayers these days J

OK… in attempt to catch you up to speed since JULY yikes! In bullet form here we go on the major things, especially things we have been following on the page.

-       Fall has been rough… first time not going back to school whether as a student or a teacher.  I spent two weeks in CDH for an RA Flare. My fixed income changed because of disability status and my insurance changed. EEK.

-       Left knee with the GIANT wound -After four and half months, it is finally all closed. YAY. What a crazy adventure that was. We are now just working on try to work on scar healing, getting it to go from purple to pink - so I can have surgery on the knee. I DO need a total knee on this knee but CAN NOT have surgery until the scar on the knee is PINK because of how fine and fragile the skin is on the knee, until then we can only do pain management – boo.

-       Right Knee- Norma. We found out that when I fell I cracked the knee cap-hence why I have been in so much pain. It has since healed there is nothing to do- I just live with how it is. I injured my ITband pretty bad so we are working on that in PT now again. We cannot and will not do surgery on Norma because of how complicated my body is.

-       Been having some real bad GI problems on and off since July, got cDiff in summer so now infections are harder to treat in me and will soon be having some GI testing done over next week

-       RA flare really messed with both feet and have been in PT for both of them

-       Have had multiple bad ear infections in and recently learned that my TMJ is now being effected by RA (if you knew me in high school you know this is NOT cool)

-       Diabetes has been a roller coaster since RA flare but slowly being back on track. Got really sick to do one medication and had to go off it and trying to figure out new treatment plan

-       Addisions is still up and down but lately it is “stable” we are jus trying to figure out how taper down off the prednisone, and it of course does not go well

-       Sojgrens has been acting up like it usually does in the fall-dry dyr skin, cotton mouth, bloody noses ect.

Other big news… With everything going on we thought it would be good to get some fresh eyes to look at things. My insurance does not cover out of state so I cannot go to Mayo, Hopkins or Cleveland Clinic. SOOO I currently am in the process of getting things rolling to be seen at the University of Chicago- not sure what all this will entail we are still working out ALL SORTS OF DETAILS, we just know that’s where I am going. They have my information and my primary cares info and we are working with a friendly man named, Lloyd. I am so thankful for my brother and his wife  and so THANKFUL for them -its getting us places thereJ They will get my file, I will see specialists, probably have some test done ect and we will see what they have to offer in terms of my treatment. This does cause me quite some stress & anxiety but I know the end result is  hopefully a good thing.

Currently… we are working on figuring out GI things & GI testing… going to PT for both feet and my ITband for right knee, Norma… looking into TMJ issues AGAIN… figuring out new insurance… working on finding out governmental assistance and new finance situation… and getting things ready for U of C…

just trying to make through each day! LOTS OF CHANGES THIS FALL, and they haven’t been the most fun, so please keep the prayers coming my way, I appreciate them. I will keep you posted as things start to progess with U of C!

Thanks so much for everything!
Lots of love

Mandy

"Whatever I have, wherever I am, I can make it through ANYTHING in the One who makes me who I am" Philippians 4:13

Beach day!!

If you know me, you know I LOVE the beach! Every summer since i was a baby my family goes to St. Simons Island GA. It's one of my happy places. I love it.  One  of the many large bummers about having rheumatoid arthritis and Addison's disease is I have NOT been able to go to the beach...whether it be Georgia or Florida beach or even Chicago/ Lake Michigan beaches. I have not been stable enough, medicines weren't right, reactions were too risky ect,,, well... TODAY... Jess, Riley and Sandra and I drove about two hours to Warren Dunes in Michigan and spent the majority of the day there and it was fabulous! I had so much fun and highly enjoyed it!! Even better... IM NOT IN YHE ER right now!!! Yes I am sore but that's ok, thats why we have ice and pain meds...walking in loose sand is tough stuff!, throw in it two bad knees and its real hard... But I'm ok!! It was a wonderful day and ill take that. Yay!!!

The view all day!

The dunes from afar!

Sandy Toes

Ry and her squinty face

Burying my feet in the sand

Riley snuck up on Sandra and just jumped right on her!

Old self and healthy body

Tonight as I have been lying in the hospital bed I've looked at my bruised arms from IVs, the rash on my arms, the medical bands on my wrist and my giant belly... Ive been looking at my life right now... i cant work, i can barely go for long walks, its hard fi climb stairs, I'm jn some sort of Pain all the time...i dont like It. With that I've been thinking of the "old Mandy" who was in shape, healthy, had cute hair, could wear contacts & make up and looked pretty good. I could be spontaneous, I could work, I could run... I could do what I wanted... I miss that. I miss healthy Mandy. I'm not the biggest fan of RA, AI, Diabetic Mandy.  I feel like I could be a cousin to Jobba The Hut. I wonder what lies ahead and hope things can/will change....

In hospital bed tonight July 7, 2013

- At a restaurant  June 30, 2009

latest carepage

Here is the latest CarePage update...

The adventure continues… 

On Monday I saw Dr. Sigalove, the plastic surgeon, my older sister went with me, and agrees he’s nice to look at J ha ha BUT he said the wound is doing what he had hope it would be doing slowly healing and making new tissue. Yay! So, surgery to close the wound was schedule for two weeks on Tuesday June 18. It is suppose to be outpatient and is being done at CDH. He is pretty much doing a skin graft on me. They will put me under. The wound will be “surgically cleaned” and then A patch of skin will be taken from my thigh, and then be put over my wound to “patch it up”. I will be in a immobilizer for 4-7days because its right over my knee so it cant bend. After the immobilizer it will take about a month for the rest of it to recover and heal. SO, for the next two weeks I need to continue to bandage my knee and do wound care –UGH. SO annoyed and sick of this.  I am having to switch the type of wound care that I am doing for the next two weeks, which is a pain. I was using this stuff called Prisma, which was like a form of collagen that helps produce tissue growth, healing and keeps the wound moist. The prisma dissolves and you don’t have to take anything off when you change the bandage. Well, I have to go back to “wet to dry” bandages. Which means I take wet gauze and pack it in the wound and then put dry gauze on top. This is a little more painful, because every time you change the bandage you have to peel off the gauze off the wound, which then “peels” a thin thin layer of tissue off – it hurts. Dr Sigalove wants this bandage type because it helps keep the wound more “raw” and keep infection away better. UGH. I am for some reason really worried and freaked out about this surgery… Dr Sigalove, my primary care, rheumatologist and endocrinologist have all gotten “worry phone calls” from me and all have reassured me, this is the right thing to do, it should go fine, and we are taking all the necessary precautions.  I will go to the wound care clinic on Friday the 7^th and 14^th to keep on eye things until surgery.

This coming Monday June 10, is the “oral surgery” to get rid of my wisdom tooth. As a precaution I am starting an antibiotic this weekend, and will have to take a stress dose of my medicine for my Addisons. Otherwise, im being told this is should go smoothly and without complications

On Thursday June 13 my next Actemra infusion is scheduled as well as seeing Dr Rhew, my rheumatologist.

I will continue to wear the air cast on my right ankle for the next two weeks as well. My right knee, Norma, and the ITBand issues are really bothering me and cuase a lot of discomfort, despite doing everything I am told to do, so I will head back to orthopedics to address that next week as well.

Thanks for all the encouraging notes, emails and texts… I love them. Im that person who keeps things like that and appreciate it, so thanks.  To answer the “how am I” question its sorta trick and a very loaded question… I am doing alright.  Things are hard and discouraging at time . They also are beyond overwhelming and wearing on me. Meltdowns are more frequent, as well as tears,  but im trying to keep my head above water as much as I can. Ive told some that this whole knee/wound thing is really throwing me for a loop and the diabetes diagnosis makes me a little crazy – not to mention the other diseases im trying to manage. But I am trying my best and trying even harder to be more open with people and reach out for more help, not as easy as one would think… I do NOT understand why God has thrown all this my way, but for some reason he has, so I will keep the hope and faith and continue to truck along on these not so fun adventures.

Love to all

Mandy

Tooth & knees

For some reasons my last three posts did not post. So here is the update I wrote for my CarePage

"whatever I have, wherever i am, I can make it through anything in the One who makes me who I am." Philippians 4:13

Lately I have to keep reminding myself of this verse... I have been through hell and many, many different health trials so with each little set back or new thing that has come up I need to tell myself that by the grace of God I keep living with my diseases and getting through each health adventure, so somehow I can make it through what's currently on my plate..

Well, last week I cracked a tooth, which led me to the dentist on Saturday. Turns out the tooth I cracked, is a giant wisdom tooth and now has an exposed cavity. Awesome. My dentist said it needs to be removed, which means oral surgery and for me to see an oral surgeon. My tooth was filed down and feels quite funny, and there is a hole in it from the cavity, eek, don't like mouth things. Today, I met with the oral surgeon and he could not have been any nicer of a man. However, his assistant kept calling me Barbie, I've been called Candy before but not Barbie. Always, he Took lots of time explaining things to me Aaaaaaand gave me good news!! My tooth as nasty and big as it is in perfect position to be removed, He told me not sweat it and will take probably 5-10minutes and he'll be done. I'm not going to get any anesthesia bc we agreed I have a pretty hight pain tolerance so, I'm just going to get numbed up and have headphones on.  This means bc I am not being put under I don't need stop any medicine or worry about my infusion! AAAAANNNNND they ran things through the system and I'm still covered under works dental insurance! Praise The Lord. As of today I'm schedule to have this done on Monday June 10. 

Monday (memorial day) I ended up in th ER for the afternoon and early evening due to my Addison's starting to act up to a reaction from a new medicine. Thankfully, we got on top of things quickly, I got the medicine I needed via IV and IV fluids and was able to go home that evening.

Today I also went to orthopedics where things didn't really go as I thought. The LEFT knee, Erhel, the one with the giant open wound actually is healing nicely and the skin  is "granulating nicely." Woo Hoo the doctors said it looks great - personally I still think its nasty looking, sorta like a weird brain or hamburger meat :) we still can't address the other issues with knee until the wound is healed.  Ive had no mor signs of infection since last week and see wound care tomorrow. This Monday, I see Dr S to go over surgery details to get the wound closed up.  Now, since my second fall, I have been saying that Norma, my RIGHT knee the one that was replaced was bothering me. So they did X-rays and looked at it. Sure enough I have injured my IT Band and its is SUPER inflamed at the knee. This injury is what has been causing my knee, hip and leg pain and really hurts. This type of injury is seen a lot in marathon runners or triathlets and come one we all know how much of a marathon runner i am! On top of the IT Band injury I also have done some damage to the tendons and muscles under my knee cap and badly bruised my knee cap. While my knee was being examined he noticed that my right ankle was still swollen and so he began to ask questions about my ankle. I said how I had twisted it the first fall but was just told by ER doctor that it would hurt and was sprained, no X-rays were take of ankle. This concerned  my doctor SOOO I got X-rays of my RIGHT ankle... And what do you know bones are bruised and there was/is a slight fracture to my ankle. So fun. He looked at me and said typically we would cast you but can't because of my ITBAND injury and my other knee being injured and wide open, so I'm in a air cast now, which actually feels nice on. My doctor and his NP both saw me today and both looked and me and said how sorry thy were for me and were shocked that I was actually walking around considering my left knee is injured and has a huge open wound, my right knee has a bruised bone and IT Band injury and my right ankle is partially broken... I probably should of burst into tears and collapsed on the floor but sorta just sat there in disbelief and asked what am I suppose to do?! And was thinking this is some nasty joke. I was told to keep doing what I am doing and to stay off my feet and sit... Because I can barely walk and I can't swim until wound is completely healed, it doesn't leave one with many other options, since ya know i have to busted knees and a busted ankle.So, yes that is me, with a bandaged knee, air cast and using the walker occasionally.

 Besides just being overwhelmed by life I think I am just numb to things right now because there is just so much to deal and process. If I think of it all at once I fear I will explode or melt down... But I'm doing my best. So... Until I figure out surgery for the knee, I guess I will be taking it REAL slow and easy AND will be trying to ask for more help... Which does not come easily for me and going one day at a time I appreciate all the kind words and encouragement and love all the prayers. Thanks for joining me on these craZy adventures! 

Much love

 Mandy

Oh yes waiting room fun sitings ...  a elderly man in SHORT running shorts with a mustard yellow sweater with a Dino on it,  a girl who unfortunately wore white shorts with bright rainbow underwear, a child ran out of the dentist office crying and yelling and squirted toothpaste on their mom while she paid

Seriously?!?

*beware of nasty picture at bottom of post


Well...
I was with my cousin walking today with my walker.
Somehow I slipped.
Fell on my knee and split it wide open again...yes the same knee.
Had to call 911.
Went in ambulance to hospital.
It's awful!!
I guess if you reopen an area that was stitched, you can't reclose it.
The wound needs to heal from inside out.
It's about 10cm long and in one area about 3cm wide.
It's huge and nasty.
I was admitted to hospital.
Tomorrow will be seen by team of doctors to make official plan.
Tomorrow I was suppose to get infusion - not sure if that will be able to happen.
My diseases are really complicating things.
I have no words to describe my frustration.
I have no words to describe how disappointed I am about Friday.
Ill know more tomorrow...

Prednisone

LATELY

Yes... its this type of post again... lately... I have so much to say, just don't know who wants to hear it and is it really important? However, lately I have felt defeated, overrun, frustrated and alone - so not very fun. Being in and out the hospital is quite stinky, then realizing there is NO END in site - ever for living with these two diseases... So, I hit low points, and lately we have been low. However, I have great support with my friends and family and therapist who help me a lot.

Anywho... healthy wise.. My Sjogrens has really been bothering - really bad bloody noses, dry throat and my eyes are killing me! So we are trying to figure out some new things to try. I am scheduled for hand surgery this Thursday January 31 to do a trigger finger release of three fingers. We are also continuing with doing the Actemra infusions every three weeks and that seems to be helping a lot more than every four- i don't have the the 4th week slump/shut down. WE still struggle every week to get an IV  which is no fun at all. My Addison's has been controlled lately and we are still working on tapering the steroids, slow and steady. On Thursday I had my last orthovisc injection in my knee - which KILLED, but am hopeful that I will get a relief from the injection despite the pain they initially cause. My skin is becoming an issue again- probably due to all the weather changes, so I will see dermatology soon to address my rashes and falicuitis.

I have really been thinking about what it means to live a life full of suffering... I am thankful that I have a God who cares for and me loves - i know He will help me through anything, but man oh man is it hard!!

What was going on

This is part of an email I sent my family on Sunday, it does a little explaining of Addisons Disease and how it works with my crazy mixed up body. Hopefully give you a little clearer pictures of what was going on the past week or so. 

What's been happening.

I have Addison's Disease (adrenal insufficiency).

I have Stills Disease/Rheumatoid Arthritis.

I am allergic to nonsteroidal antiinflamatories (NSAIDS)

This combination is very strange and rare.

Whenever the RA acts up I have to go on steroids not NSAIDs. When you are on steroids you can not just stop taking them you have to taper off them, especially higher doses.

Your adrenal glands make a type of "steroid" that control a WHOLE LOT of things. When you have Addison's your adrenal glands "shut down" and don't make what they should so you have to take a type of steroid so your body can function. 

My Addison's can act up anytime my body experiences stressors, get sick, RA flare or just out of the blue. When AI acts up my body kinda shuts down... I get very nauseous, diarrhea, lighted headedness, stomach pains, body aches, body temperature go nuts..these are all signs of danger that I could be going into a adrenal crisis (bad news bears). In order to help and avoid a crisis, I need to get larger amounts of the "steroid" your adrenal glands make, this is given via IV and I also need to be pumped with fluids - which means hospital. After being pumped on the larger amounts you have to taper off them. The taper needs to go slowly so the Addison's doesn't act up, which is tricky. It's important to taper off the steroids so your body can adjust and compensate back to normal.

With the AI things can also escalate rather quickly and at times strangely.  Unfortunately,  neither RA or AI  is predictable - which as you know is frustrating and at times complicated & scary. It also means ER & hospital visits so I can get the higher doses, bigger medications my body needs and all my issues can be addressed & monitored. When I have a RA flare - AI needs to be addressed. If I get sick, a cold etc - AI needs to be addressed. If I experience weird amounts of stress - AI needs to be addressed. Since, a lot of AI symptoms can mimick and appear like the flu, a virus, food poisoning... I have to be in good communication with doctors (which I am) and have a action plan set in place (which I do) so we can figure out what we are dealing with. 

So, as you can see, there is not formulaic treatment for me. There is no formula. Ever.  And if you ever feel confused and frustrated in understanding what's going on with me, know that you're not alone. As I constantly put my life on hold and I'm consistently reminded how little control I have over my health, I am often frustrated. It's a merry-go-round that I feel like I can't get off.  

This week i was at the beginning of a adrenal crisis. Was pumped with fluids and given IV meds. The doctors and I have done lots of communicating and talking about things and making different plans for treatment. The taper this week has gone slow and has been tricky bc I kept having set backs with AI. Currently, (Sunday evening) I am NOT in fluids anymore and heart is stable. Everyday we have been tapering down on the steroids by 25mg.

NINE DAYS

After NINE days... Yes, NINE... I am home!!

I am cozy on the couch with my girls!

Still here...

It's been a week and I'm still here.

Addison's

Well, I've had a rough weekend which ended with going to the ER around 5am on Monday all because of Addison's Disease. I am still in hospital and will most likely go home Thursday. We had to change around the drugs for the AI which has to be done very slowly. I thought I understood Addison's and what the adrenal glands so but I have learned a lot more about the disease and what they do- its kinda crazy. So, here I am back in hospital it's crazy. I'm trying not to get too down and frustrated but if its not one disease it's the other!

Home

I hope everyone had a wonderful Christmas! I unfortunately spent it in the hospital but am home now- came home Wednesday morning.

A holiday RA Flare

Well, RA decided to give me a flare up for this Christmas season and a nasty one. It started Thursday afternoon and just went downhill and fast. I played the mental game...I need to go the ER, I don't want to go to the ER game for a while Thursday night. Finally went in around 4:00am... Had a HORRIBLE experience in ER, horrible... But was admitted around 9:00am. Things are bad. Awful. I'm miserable. RA acts up then so does AI... Sheesh So, as of now earliest is Christmas Eve ill go home, but we are going moment by moment...

Here is a pink 4ft soft and snugly elephant from my mom. It's acting like a body pillow.

lately...

so, its kind of obvious I haven't been around lately on the blog, truth be told I don't know what to say about these last two weeks, except my new normal and way of life has really hit me. I am too sick to work and am not working - thats pretty stinky. I have been kind of down. Don't know what to do with my days. I find myself "missing" lots of things, even though I have so much to be grateful for. 

Life with RA thankfully has been pretty normal. I have minimal joint stiffness in the morning. Wake nauseous. My knee hurts no matter what I do. My hands ache all the time. I have better energy and can get out and do a few things each day. I don't sleep well and my whole body aches at night. My eyes are super dry and I wake up every morning with a dry mouth and bloody nose.  My Addisons is like a ticking time bomb I feel. If RA acts up, Addisions Acts up. If I get sick Addisions Acts up. But lately, its been pretty stable. Every now and then some BP issues and feeling dizzy but nothing thats to crazy. Thats my normalcy. Sounds awful, but I am use to it. 

Then there is just other parts of my life as well that hard and need working on.

Life is hard. Thats why we go day by day.

Done!

All my disability paperwork with Teachers Retirement System is all DONE! I will start getting checks once month at the end of November.

Cardiology

Today I saw nice ole Dr P. for follow up from all my recent trips and stays to CDH. Every visit I had some issue with either my BP, heart rate or light headedness. It was a pretty good appointment. I'm in no immediate danger for a heart attack- which is always nice to hear. Most of the issues I have been having or had were directly linked to either my Addison's acting up or when my RA flared- which is also "good news" meaning there is nothing new happening. My orthostatic hypotension still being managed by meds- he did say my heart works overtime to "correct" this issue and thats my pulse shoots up way high and BP doesnt drastically change, which i guess is ok thing. I am having testing done to make sure everything else checks out ok and to look at inflammation around the heart. They did a EKG at last ER trip so that didn't need repeating, ill have a stress test and echo done here soon. In the meantime nothing is changing which is good.

Rheumatology Update

On Thursday I saw my favorite Rheumy Dr. R for my monthly check up. Last month I saw her right before my Actemra infusion, this month I saw her after my Actemra infusion. She like me is amazed and what a difference the infusions have on me! Its crazy, in a good way. Speaking of infusions we talked A LOT about them and how we LOVE IT but also how hard it is on me. Its hard because I get them every four weeks and the last week is a slow decline for me meaning- my symptoms get worse and worse as the day comes for my treatment.  We talked about the possibility of changing the length int between treatments and this is what we are going to try... This next treatment will be three weeks from the last, partially because of the holiday and partially because we want to see what will happen. I will then see her four days after my treatment. We think we then move the treatments to every 25 days instead of every 28 to see how that helps. Things that we will need to watch my blood work and track symptoms during these new trials to see if they make in a difference in how I feel. WE know we like the drug but now need to work on the timing of it.

As most people know my veins SUCK and I have an AWFUL time anytime I need my infusion or anytime the ER/hospital needs a IV i have problems. When at the infusion center I talked with the nurse and a patient about what is is like to have port put in.  So, Dr R and I talked about my troubles with IVs and if port would be beneficial. Dr R said that ports can cause lots of problems because of the high risk of infections, possible site for blood clots and you need to make sure you keep it clean. Ports are used A LOT with patients who receive chemo, but have an end in site for their treatment-meaning they are not used for  a LONG time. I unfortunately have no end in site for my treatment and so that is one of the main reasons why Dr R does not want me to get one. She is open to the idea of a pic line.  A picline is different than a port but hard to explain so you click on the link for info. A picline is easier to to take care, can get flushed and changed so that is what we would look into. However, because of past with the PEs and DVTs i will need to talk to hematology and see what Dr L has to say about it and she has the final say. Getting a picline or port kinda of freaks me out and is a nice reminder of how sick I am, however the thought of not getting poked a minimum of three times every time I need an IV sounds nice. They can also use it to get all the blood draws form me as well.

We then also look at all my joints and are so happy that the swelling, warmth and redness goes away and is stable because of infusions. Thank the Lord. Because things are being more stable we address the "damage" that has been done to my joints, which is never any fun. I need a new left knee and hand surgery on both hands. We can not really do any thing with my knee until my foot is healed and I can not have hand surgery until I am off the blood thinners... so we just wait. No Fun.

Due the weather changing and the cold coming we started to discuss the issues I usually have from teh cold and how to address them. Some of those issues are:
- hives from wet rain and extreme cold
- rash coming back and other skin problems
- heart acting up with extreme weather
- stiffer joints in the morning
- Sjogrens being more active with dry mouth and dry eyes

I will go back to see Dr R on the 20th after having my infusion on the 16. Until then I am trying to wear my braces as much as possible, doing what PT exercises I can, relaxing and sleeping..blogging and crafting! I also have more appointments coming up.. I see Cardiology on Monday and Hematology on the 8th and will update you on the heart and blood after I see those doctors. Thanks for the love and support!

Its hit me

So, it has been one month since I resigned and its finally catching up with me... and its hard. My new reality is slowly sinking in more and more that I am DONE teaching full time in a classroom with 20 something kids - its hard, its strange, its weird and makes me sad. I miss seeing my friends at work. I miss lesson planning and creating things...but mainly I miss the hustle and bustle of all the kids, the laughter of the kids, the learning that happens with the kids... I miss it. But I know resigning was the right thing. My poor body is fighting so hard and I need to take care of it and help it as much as possible. I have moments where I don't want to get of bed because I don't see the point, or moments where I just want to cry because I am so sad. I get so mad and frustrated at the diseases I have and how much they have taken over and ruined parts of my life. Then I remember things will be ok. I am ok and my needs will be taken care of.

"So don't worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today." Matthew 6:34

 I am still waiting to hear from TRS on the status of my disability papers but at this point am still waiting, which is hard.

Fort Wayne Trip

Today I got home from my first trip away in two and half years! I had a WONDERFUL time visiting my sister and her kids in Fort Wayne. It felt SO nice to go somewhere and by myself! The drive both ways was beautiful- i love the Midwest in the fall! Heather has a very welcoming and beautiful home! When I got in their guest room she had a cute little basket to "welcome" me - it had cute little Bath & Body Works set, a fun mug & tea and cozy socks-so thoughtful! When I was there the kids had school and Eric worked & had to coach so I got lots of sister time.  I had a really great time and am SO thankful everything with my RA and Addison's stayed under control so I could enjoy my time there.  I did learn that traveling & being away with RA can be challenging - I will write more on my thoughts on traveling later- for now enjoy some of the pictures of time away!

Me and my older sister Heather

Due to the fact that I am not on as many meds and certain meds anymore I got the ok right before I left to have wine! So Heather got some great wine for use to enjoy at night while we hung out and watched Dancing with the Stars and other TV shows at night!

On Tuesday I called it "Mandy and heathers day of fun" It was such a nice day out we went out to lunch and sat outside in the sun! Then Heather treated me to No Chip Manicure - we got pretty fall colors (picture doesn't do it justice). After our manicures we went to hobby lobby because it was right next door and I couldn't resists, plus we were planning on crafting later. Heather works at bakery and makes Ice Cream Cakes, so she took me to her store and I met her friend Suzy and got to get a yummy cupcake-her store is SO cute! After visiting her store we went to Starbucks then picked up Abby and Jake from school. Then we headed home where she made our grandma wickwares -yummy apple crisp...it was great day

Abby had half a day on Wednesday and had her friend sleep over.  We had gotten fabric at hobby lobby so I made them matching satin flowers. The girls also collected leaves so Heather and I could wax them and make her a leaf garland as well.

Abby and I being silly on the ipad. I had lots of fun with Abby this trip as well. She was home every day after school and had a half day as well one day. We did lots of giggling, played barbies, watched movie and I helped her with some of her homework. 

Haley and I tried to take a nice picture together but she couldn't stop laughing! We had fun at night talking. On Wednesday we spent the afternoon braiding hair, playing on pinterest and watching Friday Nigh Lights. We talked high school and how at times in life its so much better to laugh and things then cry :)

my nieces! My nephew Jake was "too cool" to get in any pictures and was very busy keeping up with social life, as most 14 year old freshman boys are. It was great to see Jake as well-hes gotten so tall!

This is Simon. He is such a fluffy, fun and snugly dog. We bonded.

Driving home after a great trip!!