Nieces

My sister from Fort Wayne is in town for the weekend. So, last night I had my two teenage nieces sleep over and then took them out for cinnamon rolls in the morning. There was LOTS of laughter and giggles. I LOVE seeing the friendship and love between the two of them... How they cuddled on the couch during the movie, helped each other with their bags an holding the door open, getting dressed in my guest room, how they laid in beds and talked, sang songs... The two love each other and genuinely care for each other. I feel so blessed to be their aunt and call them family. It fills my heart and "good happy" tank up. And wow... Teenage girls... :) love my nieces.

Pool Girls

So my girls love the baby pool and my sisters newly fenced in backyard. Today, Olive played so hard she actually fell asleep in the pool!

The girls trying to figure out how to get into the BIG pool!

Darla loves to sit in pool and soak in the rays

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!

Orthopedics & knees

I am so thankful that someone invented waterproof band aids, and that there is one big enough for my knee! I love being in the pool, if I could live in one I would. So, as you can imagine I've been swimming a lot since Thursday. Even though i "pay for it" when i get out of the water & later that night, its worth it My townhouse complex has a pool, my sister has a pool and I belong to Wheaton sports center which has the warm therapy pool! Pools everywhere!

Anywho... A few little updates on the kneeS after seeing orthopedics today. We shall start the left knee, the one that has the wound and I call Ethel. Yes, I name my knees. The wound looks good... Was told it will take a good 2-3 months for the rest to completely close. Yikes. But the days of bandage changes and gauze are over with and band aids are the new normal for the wound. Now, since I first fell back at end of April we have not been to adress how my knee was hurt. Then I fell again in may, and then we had the skin graft surgery SOOO NOW we were able to address issues with the knee. Now, I have been able to tell that things are not right with my left knee but didn't realize HOW BAD. Turns out ONTOP of arthritic changes, I have bad patella tendinitis AND a torn meniscus. Yup, which means surgery. (Cue the watery eyes in Mandy) Then, came time to talk about Norma, my right knee, which has given me no real issues until I fell. Turns out my scar tissues has broken up and is shifting in my knee, as well as there being some loose bone fragments. These pieces are rubbing, crackling and cause shifting. Also, that the synovial fluid around my joint is still greatly effected by RA and this irritates the scar tissue and fragments. The only way to fix that yup surgery (cue tears completely running down Mandy's  cheeks). There is ALSO a possibility that I have cracked or slightly chipped a part of my my replacement but it isn't completely for sure, which this means surgery. (Cue full blown tears and sniffles from Mandy, which lead to a hug from doctor). SO NOW WHAT?! Seeing as those I was told that BOTH knees need surgery. I looked at my doctor and all full of tears and choked out to  him, "I can't, Big mike, I just can't." Then sorta of had a "why me, I can't handle this, I can't catch a break" meltdown in the office...thankfully Big Mike and his nurse listened and calmed me down. Then we talked and put our heads together. Here's is what we came up with...

- I can not have any surgery on Ethel (left knee) until the wound is completely healed, which earliest would be three months - SOO we are NOT going to bring the "s" word up until then and we will revisit it then

- a cortisone injection was given in Ethel to help with pain

-holding off on MORE physical therapy bc I said I would do it on my own AND  I was given the OK to go to the pool as often as I liked! Was also told I can ride a bike again! Yay! Anyone up for a ride on the tandem! 

-there is nothing really but surgery that can help dear ole Norma the right knee, so we checked prescriptions I have here at home for pain, and I ordered new electrodes for my HWave Machine to just help manage pain & discomfort. RA sure has gotten the best of My knees! SOO... I have given myself a minimum of no surgery for three months and am ok with our game plan. I got hugs from everyone in the office and made my appointment for three months and left. I want to TRY to enjoy the rest of summer and establish some sort of routine and normalcy. I will swim and bike and walk as much as my diseased body will let me and I will TRY not to think about surgery on the knees for the next few months bc a lot can happen between then - especially when your name is Amanda Jane :)

Now, this is a side note... I know people want to help, I know people worry about me and care for me, but I would GREATLY appreciate it if you would NOT bring up my two falls and me falling. The "suggestions" I have been getting from people are NOT  helpful. The "jokes" about me falling or how to stop me falling are NOT nice, actually have hurt my feelings and have gotten really old. Please trust me and that I have gone over every angle of my falls and how to prevent new falls from happening with MULTIPLE doctors that I see and I am doing everything in my power that I can so it does not happen again. 

I can not thank you enough for all the prayers and many nice notes. They are greatly appreciated. Hope you all can enjoy the rest of the summer- it sure has just FLOWN BY!!!

Love to all

Mandy

Good news

It has been a very busy couple of days since I was discharged on Monday. I had a huge set back Monday night and was super sick again all night. So, Tuesday morning I called Dr Chang and he made a new game plan... Treat me as though I have cdiff  so I started the antibiotic flagryl right away on Tuesday. Tturns out I actually do have cdiff, results came back tuesday night, and was told Wednesday morning. I also have a UTI that we are treating too. Because of these infections I can not get my infusion until I am finished with my antibiotics so, Monday the 22nd I am scheduled to get it. Eek! 

Ok... THE GOOD NEWS... WE LOVE GOOD NEWS....

- saw dr kassar on Wednesday. He said my Addions is being very well maintained and we are going to lower the dose on one of my meds! He also said my diabetes is controlled and my sugars are the best they have ever been! So good I only need to test them once a day!

- on Thursday I saw Dr Sigalove. Got all the stapled taken out of my knee and thigh, he said that the donor site is healed. I think it looks awfully weird but hey, healed ill take it. The knee looks great and there is only a section about the size of a quarter that needs to close. But looks good, so good, I just get to use band aids to cover it aaaaaand I got the OK to swim!!! I just use a waterproof bandaid to cover it... And yes that afternoon I went to my sisters and got in the pool and was there again today! 

- saw dr Kungl today and my rash is pretty much all cleared up, a few more days using the anti fungal cream. We also then went over everything from past two weeks and talked about other upcoming appointments I have. She also agrees with me... No surgeries or procedures, we want my poor body just "to be". Let things settle, heal and try to get more normalcy

Well hope everyone is doing well. Thanks for the prayers.

Mandy

Home!

I am home!!!! Uhhhh.... So nice to be with my girlies and home. Very very thankful I had fun good nurses while I was there who helped me a lot. Turns out on top of the fungal gastroenteritis and the nasty rash, i also have a pretty bad bladder infection. So medication was started for that. I still feel nauseous and have bad abdominal pain but it is tolerable. Was told I may feel icky for another week or so but the worst is over. Ill be taking it easy the next few days, just thankful to be out of hospital. Thank you for all who helped take care of the girls while I was in hospital, for the nice messages and all the prayers. Next, I see my endocrinologist for the Addison's and Diabetes on Wednesday , then thursday see dr Sigalove for the knee and infusion on Friday.

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

Hospital...

Well... I am still here at CDH. I ended up throwing up a few times last night and again this morning. Ugh. They will not let me go home until I keep food in me and the abdominal pain gets better.. My thrush is also not clearing up like it usually does so that stinks. However, my rash is clearing up and looking better and better and is way less itchy. My knee as looked at and things look good there. The donor site also looks good, it just is itchy. We also ran some tests to look at my kidneys and stuff and are waiting for those results. I am tired of being here but the nurses have been great and really helpful and cheerful. I've also had some visitors yesterday and today since I'm not considered contagious anymore. Really hoping the soup and food I've eaten and dinner will stay down. SOOO far I haven't puke since 8am this morning. Here's hoping things stay in me and the night goes well... Thanks for the prayers...

Walking the halls with twins.

Sick and I'm hospital

Well... I hope everyone had a safe & happy fourth! I love that holiday everyone is just happy and having fun with family & friends! So, I have been bummed bc I have NOT been feeling week since I was discharged on Tuesday. I need some prayers that things get better soon, I am hospital and really wanting to leave! I ended up seeing my primary care doctor on Wednesday bc my rash had gotten worse and I started to have diarrhea again. She gave me a game plan and I went home. Well, that night I was up again going to the bathroom constantly and I itched SOOO bad from the rash. Thursday morning I tried to take my medicine and eat a banana and puked it all up, and then continued to dry heave, I also was having horrible pain in my abdomen. I called the doctor and they said I had no choice and had to go to ER. So, my friend Kirk picked me up and dropped me off at ER, where there was no real wait, I got a great nurse and a doctor who "knows" me. He hated what rash looked like and. Was concerned about all the diarrhea and vomiting, so I was give a bag of fluids and meds in ER and then was admitted to hospital.  I was MISERABLE. Because I am immunosuppressed I have a hard time fighting infections and can't handle being sick. Dr Chang, who is Gastro doctor and dr rhews husband came and has been treating me. He reran tests for cdiff, did an ultra sound of abdomen to look at things and did a bunch of blood cultures and blood tests. Turns out that I gastroenteritis the kind caused by bacteria/fungus and is infectious, and th bacteria/fungus is also causing my rash. And being on the antibiotic i was on was just making things worse. Getting my Infusion makes me very prone to Bactria and fungal infections that most people can just fight off with no problems, me not so much. I have started a fungal antibiotic cream for the rash which is helping, and meds for all the GI issues. I also have been on morphine  to help with all the pain I have in my abdomen.  I can not go home until can handle solid food, which I just tried eating. I am so tired of this and can't believe how sick I got and so fast. Because I am sick and have An infection I can't get my infusion either :( I feel very gross and icky and just praying this clears up soon and would appreciate the prayers. I did get a good room and could see fireworks being shot off from like 4 or 5 different locations! I also habe had wonderful nurses.Thanks for the prayers, here is hoping I can eat and go home tomorrow.

Knee & hospital

From CarePage...

On Friday evening I got to remove the giant immobilizer! It was SOO nice to get that thing off, however I took a few steps into my kitchen and got intense pain bc the knee "cracked open" and bleed like crazy for a bit. Was told that could happen and well it did!Those ten days in the immobilizer were way harder than I thought they would be. I only had to be in it for 10 days bc that is how long the skin on the knee needs to "set". I lost a little more of th graft so I'd say about 30% of the graft has taken, the other part of the knee is just open...I get to practice being patient some more bc the other portion of the knee just gets to take time and heal on its own. My thigh, the donor site I was told looks great and is healing just fine. It still hurts but is becoming more bearable each day. I will see orthopedics within the next week to address issues with both knees, was suppose to go Monday but had to cancel bc I was in hospital. I see Dr Sigalove on 11th to get staples taken out of knee and get the yellow mesh covering taken off my donor site. 

Some other adventures... I got thrush yet again thank you antibiotics and steroids. And began treatment on friday for that. Sheesh. Saturday, was my 31 birthday and I had a bit of a car accident, and am praising God I am ok and that no one else was involved. Pretty much i was driving down Geneva Rd, my car smelled really funny and felt funny and all of a sudden it sounded like a cannon being shot, pieces of my car flew in all directions and my tire flew off my car along with the fender! It scared the shit out me. I was able to steer the car over to the side of the road. It was so weird and crazy! The police and I were shocked that the fender, wheel, and other parts didn't hit any other cars and that I didn't hit any other cars! Crazy.  I have not been feeling the greatest all week and I knew it was from the antibiotic I was on for my knee. Well, things took a turn for the worse Saturday evening. From about 11:30pm - 4:00 am I was going to the bathroom about every 20min, and then around 4:00 is when I started to puke and then dry heave. After talking with my sister in law and brother they confirmed what i knew I had to do and that was to to ER. So, around 7:30 my cousin came and picked me up and we headed to CDH. It was SOOO nice in the ER. There was no wait, I got a doctor I've seen before and I got a fantastic nurse! Having Ari and her lil Levi in ER also helped! Well, they got the IV bag going in me and FAST since I was quite dehydrated. Well, I was actually admitted on Sunday morning and was discharged this afternoon (Tuesday). All the doctors were pretty certain I had gotten the bacteria infection called "c diff."  Turns out and praise The Lord I do not have it! Which shocked the doctor as well. However, what was making me so sick was the antibiotic I was on for the knee. So, that was stopped on Sunday. On Sunday and throughout my time in the hospital I complained that my skin was SUPER dry and itched a lot...woke up Monday with a awful rash on my arms, this rash got worse throughout Monday and Tuesday morning I started Bendarly for it since I'm already on steroids. However, the rash has continued to spread and is on my thighs and patches on stomach too-it's sooooo itchy, and although the hospital gave me this special lotion, it feels nice but hasn't helped the rash. So, ill be calling my primary care in morning since it continues to get worse, it's now on my chin/neck. We think that this too is from the antibiotic and just a delayed reaction, but I'm not to sure I agree with that. Late Monday evening I noticed that my hospital gown had some blood on it and that my "chest" hurt, sure enough it looked like a stretch mark or two had split open and it was all red, raw and nasty, so nurse helped me clean it all off--- when doctor saw it this morning she said it was a fungal infection that had began to bleed. Awesome. So... I'm at home with cream on my chest for an infection and just keep coating my arms, thighs and stomach with lotion for this itchy itchy rash!  NO FUN.

So... PRaise The Lord I was safe on Saturday and that I do NOT have cdiff like all the doctors thought I did.  Prayers are needed that my knee does NOT get infected since part of it is open still and I am NOT taking any antibiotics anymore. That we figure out what is going on with this rash on my skin and it clears up. Also, that the infection on my chest clears up.

I also have my infusion on Friday and am worried like always bout the IV, especially since I had seven total pokes this weekend for the IVs. ER got it on first try but then it blew and they needed to start a new on. I have one the biggest IV bruises I've ever had on my arm - so pray IV on Friday goes well.

If you ask how I am you will get the response "ok" because well I am. I just feel numb lately and do not want to feel anything bc there is just too much. . Could be worse, could be better, so I'm OK.

Thanks for the prayers I appreciate them. Love to all!

M

Good day

This week there has been a whole lot of sitting on the couch and watching movies, TV and getting snuggles. I have been sooo frustrated with my knee and this giant brace/immobilizer has really been a pain. My thigh burns like crazy and my knee itches and stings. SOO crazy and maddening. However,  I've also been super blessed this week by people coming over to help me...

- my sweet cousin & her kids spent the day with me

- my friend and her husband brought me dinner & helped me with an ant problem in my kitchen

- my neighbor has come and helped with bandage changes and made dinner

- my other neighbor grilled for me one night

- my mom went grocery shopping for me

- one of my best friends & her little girl have come in the morning to help me get ready 

I've been surrounded by lots of love and help, I am blessed.

Today I spent the day at my sisters pool with friends & family. Bummed I can't swim but it was great to be outside and with people who I love... Came home to a oober clean house too! . My ankles are hurtin and swollen but that's not bad considering how warm it's was... It's been a good day!

One more day in brace....

Graft updates

"God Knows." A simple yet powerful reminder. A friend of mines niece got really sick and I followed the moms blog to get updates on the little girl. I was amazed at the moms transparency to everything that was going on and she kept saying "God knows." Which is so true. I don't know. Doctors don't always know. Friends & family don't know, but God knows, so that is what I'm clinging to - God Knows. And so I put my hope and faith in that, because nothing seems to make sense to me and I really don't understand why things are happening. 

Went to see Dr Sigalove today and my good friend Lori came with. Sure enough my complicated body seems to complicate things. I have no immune system, I have problems healing and we unfortunately are seeing how this can negatively effect me. Turns out that only 40% of my graft has taken, and there is even the possibility that the skin that is there could end up not staying and sticking as well too - we will know by the end of the week exactly how much will have permanently taken. I don't understand. I don't. Friday things were awesome and looked great... And now... Only 40% has taken and that might not even stay. Stupid body. BUT, God Knows. While in the office Dr Sigalove also, removed about seven staples and the skin that did not take, so the knee/graft site sort of got cleaned up a bit. Now the knee is being bandaged a different way again. The donor site is looking good, and we changed the way that is being bandaged as well too. I need to wear the giant brace/immobilizer for another 5 days. I am doing another week on heavy antibiotics as well too. I will continue to bandage graft site and donor site until July 11. Ill go back to see Dr Sigalove on the 11, and he take the mesh covering off my donor site and remove the other staples. Ugh....BUT... God knows.

Snuggles

The girls have not left my lap side since they got home this mornin.

post-op

This was posted on my CarePage

Since coming home on Tuesday, I quickly realized wow, I can't do anything on my own! I was thinking just my knee would be immobile - nope... It's my entire leg! From ankle to hip. So, I have been trying to figure out who can help me! I can just make it to the bathroom and back on my own and can make it up the stairs to get to bed. I am very thankful for all who have helped come over in the morning to help me get ready for the day and for coming over at night to help me get to bed. It's been very challenging. My mom oh so graciously paid for the girls to stay with the Vet until this morning, and they are all clean & tuckered out.

When I keep ice on my donor site and take my pain meds, the pain is manageable. My knee isn't too painful, just stingy from the staples. It can't really bend because of THE GIANT brace I'm in.

Yesterday (Friday) was a good day. I spent it with my friend Angie. We hung out all afternoon and evening. She took me to my first post-op appointment as well. Which was like going to a spa! It's the new location and where all the plastic surgery esthetics stuff is done, and all the lovely ladies who worked there all looked like they had work done. Anywho... The nurse took my giant surgical bandages off -ow! And looked at the graft site and said, "wow, that looks fantastic!" She then looked at the donor site and said, "this looks amazing as well" when do I ever hear things like that at the doctor?!?! uh never! SOOO yeah things were healing like they should. I was then shown and told how to care for both sites and bandage them up. The donor site is super sensitive and will hurt like it does for about another week. The graft site should remain ok, since it is immobile. Everyday I need to change the bandages. Well, after the appointment Angie agreed with me that my leg with both its sites has just become a larger pain in the ass then it was before because I can not do the bandage changes on my own... Meaning I need more help! Sheesh. So, yay yesterday good day.

I did NOT sleep well yet again, because well who can sleep flat on their back and not move at all or bend a leg - not many.  Very uncomfortable. This morning my cousin Ari and her two boys were coming over to help me get ready for the day and then Hang out and help me. On their way to my house, they got to pick up Darla & Olive from the vet for me! Yay, girls are home and snugly. Well, I got bombarded by hugs and kisses from two little boys and the doggies when they came into my bedroom! When, Ari unwrapped my donor site, things looked the same and good. She added the ointment, put the pad back and wrapped it back up with ace bandage. We then slid the immobilizer off my leg, and unwrapped the knee/graft site.... and my eyes couldn't believe what I saw and I looked at Ari with watery eyes... There are about three staples that are loose and a part of the graft has "peeled" away from the knee and it looks drastically different than yesterday. I know I was told to be patient and that healing was going to be real tricky I was just HOPING things would go well. Sure enough, I called Dr Sigalove and he told me how to rewrap the knee a little tighter and that I need to see him first thing Monday morning. He might do a procedure in his office to help the graft he might not be able too. He then explained to me again that some times grafts don't take all the way and how tricky of a spot my graft was...he then also told me how sorry he was that this has happened. So, I am frustrated. I don't understand why things like this keep happening. I am praying that things heal and that God continues to give me the strength to get through this all. But boy is it maddening. 

Until Monday... I will continue to sit and watch TV, movies and the hawks. I am asking and receiving the help I need. Icing my sites. Taking my meds. Monitoring my sugars. Doing everything I can. 

Thank you for ALL the help... Thank you for the encouraging words... Thank you for the prayers. Here's hoping things take another turn, only for the good.

Friday fun!

Yesterday I had a great day, and the majority of the day I didn't even feel or realize I was sick...I felt like good ole Mandy. What made it so great was I spent the day with my good friend Angie. Angie and I went to grade school and high school together, and we got reconnected about three/four years ago and she has been a good friend through all this health crap with me. We had lunch together, watched TV, got super silly and laughed a lot...we even decided to dye my hair! It looks awesome! Nice work Ang. We had dinner with her husband, really good Mexican food from El Coco Loco and even just sat and talked... It was great! I needed a day like that, so thankful for Angie and her husband, some of the nicest most genuine people I know. Not to mention Diesel , their fur kid- love that dog. So, yay for a fun Friday with friends!! Thanks Franklins! 

Home!

Please not i am under the influence of narcotics as I write this.

Well I am home, got here around 8:00pm and Morgan is taking care of me and is sleeping over. 

They ended up calling me and asked if I wouldn't mind coming in early bc Dr Sigalove was ahead of schedule! When does that ever happen? So, Morgan and I headed over just shortly after 1:30. I got right into the lab, they checked us in right away and I was taken back. They were so on top of things and so efficient! I saw dr Sigalove and went over things with him and he initialed my knee. after that th nurse and Morgan & mom came back to be with me and were there when Dr Concrad, anesthesiologist came in.  My IV got put in on the first try! Once IV was in I was given meds, Dr Conrad gave me some Versaid, I got a little loopy, hugged Morgan and mom and was back in OR just before three. Surgery went "extremely well". Surgery was done around 3:45. I had some issues in post-op with nausea and getting pain under control... This pain is VERY different than pain I typical experience. It's like very sharp stinging and intense burning pain. My thigh hurts way worse than the knee right now. I was give IV pain meds, anti nausea and then packed down with ice bags. I spent the majority of recovery back in post op. around 615 I was taken out if post op, to th stage 2 recovery where I saw Morgan and mom again. We were there for not that long and then Morgan took me to culvers for a chocolate shake and we picked up prescriptions at Walgreens. My knee has 15-20 staples. I am in a big immobilizer ankle to thigh, and then huge surgical bandage from knee to hip! I am doing ok. Tired & drugged. It hurts a lot. And looks like ill need WAYmore help with things than I thought! I will see Dr Sigavlove on Friday to get surgical bandages off and shown how to bandage the donor site (ugh more bandaged changes) and they need to look at knee as well.

Thanks for prayers, keep them coming!

Mandy

Surgery

First off, yesterday it was a beautiful day out...and ya know what?! I was outside ALL day and for the first time in THREE years I did NOT get hives, did NOT get tachycardia and did NOT end up in ER... Praise The Lord!!! New Addison's meds are doing their job.

So... Here we go tomorrow (Tuesday) surgery on the knee to close up the wound! Anyone want to trade places with me? I keep telling myself this is going to go well, I am ok, this isn't MAJOR surgery, I've been through worse.... But I'm still am anxious, worried, and stressed mess!! Here's the run-down...

Midnight stop eating.
8:00am stop drinking.
10:00 dropping Darla & Olive off at vet for the night :)

My good friend Morgan is coming around lunch time and is my surgery buddy. mom will come out eventually.

2:00 get to CDH and do last minute labs they need.
2:30 surgery "check in"
4:00 scheduled surgery start time.

Surgery is about an hour, once I am put under. Here's what I know. They surgically clean my wound and "trim" any unviable tissues off the knee/wound. They are then "slicing" a patch of skin from my thigh. (Think of like a cheese slicer). They stretch and clean that skin. The NEW skin is then placed over my open wound like a patch and will be stitched on/over the wound. He is not sure if he is going to use a "wound vac" yet, but I could have a wound vac put on over the knee to help with healing. My knee will be wrapped & and I will be in a immobilizer. The "donor" site, my thigh, is sort of like a nasty road rash burn and heals on its own. It is scheduled as outpatient with the possibility of staying the night. I was told this an uncomfortable healing process and I will need to be patient - fun. Having this RIGHT over the knee also makes the healing tricky. Otherwise... Ill find everything else out tomorrow when I see Dr Sigalove.

Praying it all goes well... Praying I don't get any infections... Praying the skin graft "takes" to the new site... Doing a lot of praying....

Ill be sure to get an update out tomorrow evening to let everyone know how things go.

Thanks everyone.
Love
Mandy

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

Ribs

Broken ribs are pretty stinky. Two years ago when I slipped on the ice outside my house, I broke a rib and didn't know it. Well, when I fell two weeks ago I broke some ribs in my right side and its been such a pain! For a week I couldn't sleep, and then I slept in my chair for a few nights and now I can sleep I just can not sleep on my right side or turn. It has hurt to do everything! I had no idea how awful it could be. I've had trouble bending over, doing my hair, getting dressed and it really has been very painful. As I have continued to walk, my knees hurt but its been my ribs that have been more of the issue. I'm hoping by next week the pain is less and doesn't really bother me for the walk.

Slow motion - wham!

So, I had nothing planned for this weekend. I was going to try to finish some hair clips and headbands I started a long time ago. Well, Jess called me Saturday wanting to go to breakfast/lunch so I thought sure! We had a lovely time at Egglectic cafe I had a very yummy omelet. Then went to a little consignment store to look for things for Riley. After that I wanted to go to Re:New spring sale. Re:New is this great store that teaches local refugees sewing skills. They take donated materials and resue them to make beautiful purses, bags, pencil cases ect. I love the store and what they make. Well, after we were there we were leaving and WHAM! In slow motion I fell hard and on my knee. Jess saw it happen and I felt it coming but it was totally in slow motion and like we both were trying to say NOOOOO she's going down and wham! I fell like a ton of bricks and you could hear it, apparently there was quite a large step down that i did not see. My left knee has a nice raspberry cut and both swelled right away. I felt ok yesterday but today man oh man do I feel it today! I'm so sore, knees are little bruised but I am sore. Crazy. Here's hoping pain goes down and stiffness loosens up.

Here is a link to Re:new.... www.renewproject.org check it out!