Medical Update " And the answer is....what do I not have."

FYI... writing this with eyes closed and edited it with one eye open and seeing double...Yes, I did say I was going to update the introduction of the blog because it really needs updating and the blog needs some organization, but I have forgotten how to edit that part and haven't asked for help yet... I also said I would post about all the wonderful things that that happened with beautiful pics and I have acually managed to get them off the camera, which I had to find. But I just watched like 5 episodes of mob wives in the middle of the night, weired because I say I hate shows like that. The music is kinda cool and maybe it made my drama not look so bad. I pretty sure I'm not going to have FBI agents arrest my husband at 5am or knock one of my girlfriends upside the head. That saying... I should be sleeping, but sleep has been even harder the last six months or so because of not being on the med routine I was on, and was working, until I had the whole IV thing start up in November. I'm in pain. What was working thatI felt comfortable with and I could sleep on conteracted with those new meds and so I have been up and down.
I told, and shared some gross pics , in the last medical update, the GVHD attack I had on my skin,, mouth, and eyes, which I am still dealing with. Now I had to start another med for the GVHD which is messing with the last newest med and just has made me feel worse. I'm acually typing with my eyes closed right now because I can't see well enough to type and will have to edit on more sleep. Ha but even my editing needs editing. I just hope I'm keeping my fingers where they need to be so I can read this later.
So the most recent medical news is relatively positive. I'm getting my picc line out this week and have stopped two of the medications that I started in november. Glad to stop the IV drug because it is so bad for me. However, the reason isn't because I don't necessarily need it any more but because there is no protocol for me and we are just making it up as we go. Gosh, I'm such a lab rat. So since the arm infection is better right now, the doc said he was going to talk to someone else and then we would stop. I gave him a week to call back and so I've decided to stop it and the oral med that goes with it and get this damn picc line out of my arm I have been subjected to for the last 7 months. What is another couple weeks going to do except swimming with my sweet daughter and ruining all my fashion ideas since I have to have it covered. FYI, cutting panty hose to cover is less hot, less to match with, as if I should care, and even though you can see through, well at least people don't have to don't have to wonder.
Now I can go back and mes with my meds and hopefully get back on track on getting off of them all. I think I'm pretty much telling the docs the plan and then they are oking it or not. Is it too late to go to medical school because I can go into a medical appt and pretty much tell my driver what the docis going to say and what they are going to do and even give them ideas. Medical school in Costa rica doesn't sound too bad, suely I'd get a job if I survived this and paved the way for others. It's just cheaper outside the country then I'd get more training hrere. Who am I kidding I don't want to spend anymore time in the hospital as possible because when I grow up I'm going to be a professinal artist, dancer, and singer, right?
I have had a lot of pain in my right hip and was so scared that it was going out too, but the doc said no, and added two more diagnoses to my list. Tendinitis in my knees and bursitis in my hips. That makes me feel so old. They also discovered castrates due to the long term use of medication., oh so thats 3 more diagnosis. Got a couple more with critical low calcium and high potassium, but now they say that has stablelized.
Yes, I'm still shedding. not as bad of course but bad enough that I can still just pull some off is you arein the mood to get out the microscope and still thick enough not to be able to get a stray tan without out looking like a new species of  of an African animal.
Mentally, I'm a little crazy. Been through a lot with family, deaths, dealing with not being able to drive but being too depressed to do anything that needs to be done, and soooo tired. When I was teaching I thought summers where the best. What was I thinking? Evalyn wore me out so much in the first week out of preschool I spent a whole day in bed, missed so activities, and had to call my in laws to come get her. When I have sleep I have the crazy dreams and so many are from God and are overwhelming. Hey at least we are communicating right?
My poor mouth. Most of the sores are gone but still having issues swallowing, and eating anything that my have been in the same state with something spicey. I love spicey food. But even things that should n't be spices can hurt and then I just don't eat, or eat chocolate. New diagnosis... scizophenic tasted budes. You know they have strawberry whoppers now?
A week after I saw the hip doc and he said what he siad I started having really bad painds in my froin muscle. I'm missing the three times a week PT so it could heal, if it is indeed  a pulled muscle. I rested it up and thought it would be fine then bam the pain is back. So now I have to get some more radiation thrown at me to see what's going on. I'm going to put that off this next week.
Also self image is huge, stop eating sweets right heather, thats not the issue with weight going. I have learned over four years that predizone is the weight, not piece of chocolate. Chocolate has saved my life, And I guess the predizone has too. But normal people go through a slow aging process but I just feel so ugly so fast. I'm alive, shouldn't I be thankful instead of pissed that instead of people saying, oh this must be your sister, I have to be introduced. I never got to grow old, I just got old.
Financial stress without know too many details and just feeling the stress from Jonathan was bad enough but now I see that how much of our income and debt is medical bills. I really want to find a job or really set up my epsy site with my art like I have said. People love my hand made recycled jewelry, paintings, prints, etc and have already sold some just in person. I just have to commit to the whole mailing process where they will come pick it up cause for some reason the post office seems so hard, well everything is harder when you can't drive or are too tired. I don't want to sell stuff just to pay off medical bills but also so I don't have to feel bad about doing things for myself that I shouldn't have to feel bad like getting my hair cut or a spray tan. Then I watched too many pawn shows and started thinking of all the stuff I could sell like my vintage Raggity Ann and Andy that
s going for fifty and I got for ten, But I don't want to sell them, I like them. If I start selling stuff like that then there goes my vintage clothing collection and a few other things I really like. I'd think I'd rather eat sandwiches for a month or two... I don't know. Got some stuff to put on craiglist but all that money is suppose to go to big magnolia tree to plant in my Granny's honor at the farm. Anyone own a tree farm? We do and plan little vacations here and there but most are paid for through points from paying medical bills. Yea, I don't think I want to know anymore about medical bills.
Going to Emory next week to get the special breathing treatment and IVIG to help with my immune system but don't have a ride or a sitter yet but pray that all goes well and works. I know that Dr. K wants me to go to Philly sometime soon to see a doc and get a second opinion about doing a stem cell boost, which of course no one has tried on someone like me, cause no one is like me.
Well wanted to put the good and bad out there for you all to pray for. Wish those of you that talk to me about reading to blog would comment so I could remember your pray requests and advice could be part of the blog one day book!
Thank you for your prayers and words of encouragement!

Medical update "Who is in charge here?" and other questions

        For those that this blog encourages, educates, or whatever, I'm sorry I have been distant. Just know that sometimes I let the worst get to me.  I think after my last blog and someone contacted me telling me their sister just relapse and I was the only one she could find that is still living this long. And I am the only one right now. Well, I gave them my information to get in touch with me, but I never heard back so I'm not sure if she is still with us. With that, and everything I have been going through and my family and friends have been dealing with, I realized how this blog can either affect people in a positive or negative way. That's a lot of responsibility and I wasn't sure I wanted it anymore. I was suffering terrible depression and a multitude of unanswered questions and lots of pain. I never want to write blog when I'm really down because I want to show everyone how I was able to see the light again. I just kept getting hit over and over again and as soon as I would pop up, like one of those kids punching blow up things (anyone know that the name of those things) and I would feel like writing, I would get knocked down again. (Random memory of my brother and I dancing in the basement to that sone "I get knocked down but I get up again) He was 10 and I was 20. Tangents I am known for....   So I will try to tell you the best I can what has been going on the last 6 months without you feeling sorry for me. I give all the glory to God for me still being alive and trying the thrive. I did lose 15 lbs cause my predizone was down to 5mg. But I was not eating well so I'm afraid a lot of those lbs were muscle. I was not exercising and used the excuse of my pain, lack of vision, and general depression. There is a funny story... I finally was able to fit into one of my thift store night gowns and robe and it was white. You know the kind that is the old worn polyester ones that are so thin and soft. So, I barely nicked my hand and started yelling I'm bleeding and wearing white!!! We told the bleeding had stopped but just like hospitals we make medication errors at home. I was taking twice the amount of aspirin I should have been on and so my blood was thin. I looked down and had blood on my precisous nightgown I could finally wear. I have a lot of short term memory loss but remembered an article I read about stains, very close to my face, and remembered a fifth of the article, the one I needed.... blood. We poared peroxcide on it and it was like Jesus and his angles came down and a miracle occurred... the blood disappeared in front of our eyes. I think I heard harps.
            As much as I have been through, you'd think nothing would bring me to the brink of insanity. I'm serious when I say that a 747 could crash right in front of me and I don't think I would blink. This IV medication, Amikcen (that I spoke about in the Nov 1st blog) has horrible side effects. I felt so much like a zombie for most of the first week, not to mention the new picc line in my arm that causes all kind of issues with showering, doing the IV itself, home health coming in, and skin ripping from tape after tape.. There were days I couldn't bear to even drink anything or get out of bed, feeling like a failer as a mother and wife, and praying so hard for people I care about going through terrible things.They kept changing the dose and the frequency of the dose etc.The IV is very hard on the ears and kidneys. I had a huge freak out scare when I woke up one morning and could not hear out of my right ear. I went two days thinking that I may be going deaf. Lucky for me the IV meds or changes in meds cause an increase in ear wax and completely blocked my ear. I had them cleaned and and omg did it feel good. It was gross but now I know why my pup Wallace loves for Abby to clean his clears. It really should be a spa treatment and next time I was at the doctor, if I were you, I would request to have your ears cleaned. I'm also on a pill for this rare skin infection that caused an up roar in the medication regimen we finally worked out. So I had to change a lot of medications due to contradictions which is a very hard thing to do. We had to figure out how to deal with pain management, staying fungal free, and deal with the clot in my heart. I had not, and still, am not sleeping well do a multitude of things including medication. So that happening at the beginning of winter with the business of the holidays was putting a lot of mental and physical stress on me. The long term use of steroids was really starting to mess with my vision making it harder than ever to write my blog which is truly therapeutic for me. Not being able to see well meant not driving and drove me to more depression because I had to ask for even more help.
        We missed most thankgiving and Christmas dinners due to me not feeling well and out decision to fly out to Texas to see my Aunt and Uncle. It had been able ten years since I had been out there. Evalyn did an amazing job on the plane and we had a great trip. Some family member were upset about us missing family gatherings but I do find it more important to spend time with family during the year and not just at holidays, which we make a point to do. It is difficult when everyone is divorced and you have 5 families to see. So sometimes we are just going to get the hell out of dodge.
         In January, the lump in my leg that was very deep started the slowly rise up to the surface. This was very scary for me . I have been asking for a PET scan for a while because the treatment for my all over body cancer increase the chance of all other cancers and my friends that had [assed on my still be alive if they would have had routine scans to check. I'm so sick of doctors, nurses, scheduling people etc asking me who is in charge of my care. Well , your talking to her. I'm lucky to have the brain cells left to see this and know I have to beg my doctors to work together and to request scans and tests that I feel like I needed being 3 years post BMT. At this point Im over a million dollar baby and it would be great to have a social worker that helped me coordinate my health care while I found rides and sitters. What would happen if I was 80 and didn't have anyone to help. I spend hours and hours on the phone each week trying to make things work the best for getting the appts and the people that I am so fortunate to have helping me. That's when I decided that insurance companies, pharmasutical distributers, and maybe the whole health care system never really wants us to get better. It would cost them too much.
         I finally went to the ER after the pain in my leg was just too much and spent several days in the hospital. I first went to my local hospital but as many times before they look at my file and say, "We are sending you to Emory". Actually I think this time I requested the move because there were already errors being made. But, yes, most of the time they choose to send me to my home hospital, Emory.
    Ambulance rides are not so bad. They are nice people and let me smoke my e cig (we will talk about that later) in there and once stopped cause I had to go potty. They did do an ultrasould of the pulsing lump that had a huge whie had on it and I wanted to stab it, really. The ultasound came bace as being t "tumor like". Geez... Fay, my step mom more big sister, took me to the ER and since I was going by ambulance and had done this so many times before I had her go home and Jonathan bring me some needed items. I had already been through the admitting process which for me takes forever and can be very frustrating do go through over and over. I think im up to 12 diagnosis now, 4 pages of medications, and maybe 8 or 9 doctors, and still need to go see some new ones. So by the time I got picked up, taken to emory,sat my stuff up by myself  that usually my loving husband does and knows right where  I want everything, went through all the same admitting stuff again, it was at least 3 in the morning. My leg starting hurting really bad and I looked down and it was explodinging. The nurse was in the room and I told him and he said he didn't have orders yet to get any samples. Who cares? You don't tell a baby coming out, WAIT we don't havethe orders. So I told him to give me a tube, I sanitized, put gloves on, took the sample myself, labeled the tube and put it on ice. I got an excellent sample which of course they said the next day they couldn't use it due to wrong tube color or not taken according to protocol. Whatever. I hadn't been admitted to the hospital in a while so there had been some staff change and I got to see new friends.
        About that time, my new immune system decided to attact the remaining old one, called Graft Vs Host Disease and it can attack many different parts of your body. I'm so glad it didn't attack my gut this time, I think if I have to be in diapers again I might lose it. Instead it attacted my skin (I have a blog from 2years ago where it did the same thing), my mouth with sores and difficultly swollowing, and my eyes.I have almost choked several times and think I might could have died once at the movie if my aunt had not been there. The GVHD didn't really hit hard until after I left the hospital, so then I was back again. And then again for a "tune up". Where we worked on my medications and I recieved an IV called IVGI which is the combination of 1000 peoples platelets that is suppose to help my immune system and also had to start a once a month breathing treatment that can only be given in a hospital setting and promise to take my inhailer everyday, which I forget sometimes, and my predizone went back up to 20 and in exchange I didn't have to take the horrible drug cyclosporin. It was probably the most heated discussion that my doctor and I have had. My skin is still shedding but almost better. My aunt Susan and Fred were down to see my ailing Granny (more about that later) and gently help me take of at least three layers with many to come. I was like what's his name on Charlie brown that has all the dirt around him. I couldn't go anywhere, sitting or walking, withouth the need to vaccum up huge peices of skin. Due to the picc line for the IV, I had home health coming in once a week and had the most wondeful nurse, Carmen. She loved Evalyn and Evalyn loved seeing her work and her little girl and Evalyn would exchange pictures. So now with everything else I was expected to mostrise daily and add i dropped to the list. The mouth sores have been horrible. I'm still dealing with these and can not wear my new beautiful dentures. Anything even a little spice will set me on fire and I consumed a great deal of chocolate because that was one of the only things I could taste.The medicationwas like pouring whiskey over an open wound. When I finally said enough, they started to get better and continue to do so, very slowly. I know two different languages now, one with or without teeth. The latter I have to learn again.I kid with people when they give me the "you poor thing" look and says hey.. I got a fake hip, fake spine, fake teeth, and another persons marrow, I'm going to be a bionic women and out live everyone!! That always lightens the mood. My skin was so sensitive that even clothing or even some natural items would burn my skin to the point I would have to run to the nearest hydrocodone bottle. I learned quickly about doing a test spot. My eyes, well they continued to get worse, but I would have good days and bad days. My right hip, both knees, back, and right wrist were all showing signs something wrong. I had a fall, that I risked myself while trying to train my grandparents dog. I ended up with a mild concusion and scans all over my body. So the fall was worth it because I got scans and know I don't have a tumor in my brain or somewhere else.
        Right after my Granny passed away (tell ya more later), Evalyn and I already had reservations at the hotel in the forest, my home away from home. This was the third attempt to go to the hostel since Nov. Since we were waiting to have her service for another week and a half, Evalyn and I took off on the best mother/daughter trip ever, our first, and will tell you more in the next blog. We got into a wreak on the way home and the air bag hitting my face didn't help my eyes. Everyone was ok, I got the the ticket of course.
          Right now, I'm trying to get it together. I saw the eye doc and they have added cateractes to my diagnosis list and I now have eye drops four times a day, lowered the steroids to 15, found out that my bones in my knees and right hip are doing ok for now but I have tendinitis and burcited and they have ordered exstensive PT at home to build up the muscles that have weakened so much.I'm very thankful cause I was already trying to figure out how and when these surgery would occur. Next week I'm getting my spine and neck checked out. After that my wrist and bone density and vitimin D shots, and the very slow dosage reduction of steroids. Please pray for these things and for God will in my life. I'm trying to seek him more and more and even when I feel that I can't hear him or he is not there it's people like you that help my faith even on the darkest days. Always try to look for God in the smallest places and in every smile someone gives you. I do prefer the neon signs though.

GVHD of skin... I was molting like a lizard.

Just some of what they got out of my ear.

         
     

What have you peed in lately?

Friends that came to help in the yard and the house. Thank you!

                 Well, most of you will say the toilet only, or men may say the occasional outside pee, which they really enjoy for some reason, or outside cause they were camping. I'm starting this blog off with this because I haven't blogged in a while and that usually means it's too hard to talk about, to gross, I'm too tired, or as I have said before when something is in writing it seem more real. And I promised to be real, hence the title of the blog, because I know others are going through the same thing, or will. So in the last month due to my bladder issues along with my hip problems I have peed in a coffee cup, a plastic cup, a female urinal (ever heard of that?), a bed plan, a bed side potty, and often times my depends that Im still wearing everyday. Not only is it embarressing to carry them around, wear them, but haveing to ask people to help me get them on my bad leg, or legs now. I have even peed in the floor before I could  get one on and couldn't get to the bathroom. Do you know how hard it is to potty train a child? Do you know how hard it is to train a child when you yourself have to ask her to get your "pink panties" . Luckily, she is wearing real underwear ( ok just got really side track eating chocholate and looking at Rick Steve Europe Trips) most of the time but just won't poop in the bowl, any advice? Evalyn is so sweet though, she will say do you want a pink one or a white one, mommy. She will sometimes give me a prize for going to the potty.  So at this point, I just try to laugh about it and add it to my joke of 32 going on 70. It's really fun when you tech comes in and says " Mrs. Cape, have you had a BM today??" very loudly. But I guess they are use to shit and I hate to say it but I think my husband is getting use to it also between a child and a sick wife. I feel so bad when he has to help me, or clean out my potty chair. He has to be the best man in the world.           I still do not have any teeth which I have found also affect the kissing department, as if we needed another reason not to get friendly if you know what I mean.  A friend of mine knows someone that said they would donate money for me to be able to get me some good dentures. I don't want the best but not the worse either. He is a missionary that does dental work and he is trying to work out details. I'm trying to be patience, we dont need to pay any more interest on medical bills but I feel that I'm looking older everyday. At one appointment, my sister brought me to, the nurse or tech said " Do you want your daughter in here?" Needless to say, since I used to model and people thought Jen and I were twins, I busted out crying and said " That is my younger sister, I'm only 32." Grrrrr
 I'm not sure if I ever explained why I decided to go ahead and get them all out. First, all of my doctors agreed with me, except of course the oral surgeon. I could have save, for now, 10 teeth, but the rate that my teeth were chipping and falling apart I would have need constant dental work. Not only expensive, but time consuming, and a nightmare. Also, the medication, reclape, that I needed to take soon for my s osteoporosis, may cause deformaties and other problems if I needed any work in the jaw such as a root canal or an infection. I have them ,the teeth, in a bag, I don't know why, but I haven't even looked at them yet.
            As most of you know, I had hip replacement at the beginning of April and a few week later I fell in the backyard and got 3 more fractures in my pelvis. Painful as it was, I healing faster than I thought, I just need to slow down and remember just one wrong step set me back 4 to 6 weeks. Recently, I was having swelling in my feet, nothing unusual and have found weird lumps around my body. I just got out of the hospital and they said I had cellulites, an infection of the tissue, which can be very dangerous. We are still waiting on the punch biopsy I had at the dermatology last week. They may have kept me another day if pipes wouldn't have busted in the wall and no kidding, 4 floor were flooded, all the linens used for the next day, and ceilings were falling apart. They had to move me to the cancer unit in the middle of the night after giving me my 4th IV. At the least the food is pretty go at Athens Regional.
           I looked over my medical stuff I have and I have been in the hospital every month since last Oct., except Feb, but twice so far in May. We are selling anything we can and I'm closing my booth. We also decided to cash in my retirement, no pentalty for disabilities, and will try to pay off most of the debt we have right now. Otherwise, I've also decided to use some of the money to increase my quality of life now and not bank on living till I'm 60 or something. This includes fixing our dock that is a danger to anyone that decides to get on it. I have some stuff on ebay, craigslist, and stuff for said in my front yard. I'll be posting some of the things for sale in case you are interested. A few is a white 6 piece wicker set in fair to good condition, useable, but could use some work. Another is a rare baby bumper, quilt and 2 sheet set called Sweet strawberry by pottery barn, and a queen size termperpedic classic mattress with foundation and cover. Going to a vintage store this week to see if this girl will purchase some of my vintage collection, and consigning Evalyn's clothes and shoes. Now that I'm starting to feel somewhat better I hope to finally get my etspy site up and going with my art.
         There's  so much more to say  but I'll wait for another day. Someone told me this week that if I make it through this stuff I will have a huge testimony. Funny, the day after I went to church for the first time in a while, the sermon was on trials and tests. The next morning I fell and got 3 more fractures. Ha Ha     Well, I think I will and do. God is the only reason I have made it this far and plan to keep fighting. I pray you do the same where ever you are your journey.

Evalyn giving love at the hospital.

Medical Update 3/23

Hi Everyone,
Sorry to keep you hanging for a couple of days. Believe me, if  had huge good or terrible news you would know as soon as I could type. So the good news is that I'm cleared for hip replacement, which sounds like horrible news, but compared to the pain I'm having now, it has to get better. Little Evalyn will say, every time I come from the doctor, "are you better yet mommy, can you crawl in my puppy house or take a bike rid.?" Breaks my heart.                  [

The weird news is that I'm apparently the longest living person after a BMT, with my particular leukemia, that relapsed, with this much  GVHD, and all the surgeries etc, that Dr. Khoury has seen. I hope that makes me a light to others and leads research in the right direction.

The not so good news is that my CMV levels are high again and I don't know what that means for the short term or long term.The other issues is medical bills that are really piling up. As most of you know, I got all my teeth taken out due to all the treatment I've had.  We're hoping my medical insurance will help pay for some of the dental work.

I should be having my surgery the week of April 8th and will need so much more assistance than we've had.  We are thankful to have such a good support system of family and friends. Thank you for your prayers and generosity.  Please keep it up!

Thanks!

Love, Heather                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  

Medical and Mental health 7-19

I just got finish reading Our Daily Bread. I feel that it relates to me because lately I have been putting on this front that says I'm ok. Well, I'm not ok. My sense of motherhood is not ok, my yard, my feet, oh Lord are not ok, the fact that I'm wearing adult diapers an can't make it to the bathroom is not not ok, my uncle Frank dying when the treatments, not ok, My Grandma Bobbie being 5 doors down from where her son was is so sad to me. My body hurting to the point of having to take pain medication is not ok. My husbands job sending him out of state for a week, we just found this out yesterday, is not ok. I can't even take care of myself. My booth loosing money last month, way not ok. I hope to have the website up and hopefully talk my boss into letting work via home or internet to promote our store.... maybe ok.

Not you have not thought about it before . "Maybe I'm just a burden." or lets just shoot it straight " I don't want to live through this pain anymore. " Yes, jen, I' m being a Negitive Nancy. I have so much on my "plenty plate" I can't keep up. I can't remember to take all my meds, I've lost some medical items somewhere on my trips back and forth. Now, I can't remember to take all my meds, get my daughter up to her free dance lessons, make myself pay 40 dollars for extra follow ups.

Wearing one style of shoes for the last few months, although they are cute are getting harder and harder. Finding clothes that fit me, well, that's really depressing.

I know all this sounds awful, but it is the truth. I'm so depressed and have never wanted to not get out of my bed, except I may be pooping in it.

Happier news and pics ahead....

FYI, no interventions please.
Love,
Heather

Medical Update 6/24

               Figure I could bring you up to speed my last few minutes of solitude here at the monastery. Now they are saying that all my problems comes down to GVHD.... the eyes, we knew, the skin, the stomach was the meds but is now also GVHD, and the swelling in my feet, he says that is GVHD too. My stomach has gotten somewhat better the last few days not sure if it is the medication ( the new oral chemo, not the study drug) or if just being around so much prayer the last few days, or both. Either way, I have not had diarrhea, nor had to wear a diaper. I have had to run like hell to the bathroom to pee about 6 times per night. My feet were so swollen on Friday that I could barely walk. You know the wrinkles on the back of you ankle..... well mine had none, the skin looked like it was going to bust. I've had some stomach pain that has kept me from doing some the art I wanted to do here, but I actually was able to concentrate enough to read...... out of a book. I have not had the concentration to do that. Of course I have to now buy or check these books, so I can finish reading them. Hey maybe I can finish reading Middle March which is what I was reading when I relapsed back in Oct. They finally found some emergency medication that they hope will work when my bone pain attacks so bad I'm crying and shaking. I don't understand why some people do not get that I don't want to be on a "time release" pain medication everyday when the really bad pain only happens every so often. Some  people are in that much pain everyday, and I do have pain every day, but I don't think the costs out way the benefits at this point. Plus, I can't sleep on pain pills, they do the opposite to me. Had some other medication changes and I'm starting to look like a drug addict if you looked in my case.

                This week I hope to start back to my yoga class, maybe a zumba, hope to find baby sitters,  somehow get out of going to Emory for one week, go to the children museum with my cousin, sell some items, get the website or something going for online orders, and get more people to sign up for Be the Match run. You know I have had only 2 people sign up so far... my dear cuz Shanna and her daughter. Come on folks, I know it's not till Oct but it encourages others!

                I had someone volunteer for yard work out of the blue and someone is setting up a "food train" with a meal at least once a week. How wonderful as it will take a while to recover. Dr. K said that the medication takes 4-6 weeks. I'm have very sharp stabing pains, which he is says is gas or the ulsers. Either way, they hurt bad.
           
               Today the Catholic Church celebrates the birthday of John the Baptist. I think of how much he suffered in order to fulfill his destiny to proceed the Lord. I hope and pray that all this pain continues to bring me closer to him, to give him glory in bad and good times, to reach out to others that need me , to provoke change where needed, and more my own sanctification. I must be one stubborn SOB.

Still Kicking but can't Feel my Feet

This is mostly complaining so you can stop reading now. Go ahead, I don't care.
Well, I guess it has been a while. Not much has changed medical wise and Evalyn has been a handful with her Mommy to say the least. But she is learning and I'm being consistent while at the same time letting her sleep an extra hour if I can just have some silence. It's been very hard for me to get on the computer. I'm having a lot of issues with my eyes with the GVHD and I'm so exhausted from being sick to my stomach and getting up in the middle of the night to pee with this water pill that I can just fall asleep mid type or read. Concentration is so hard. Last week. I just forgot what day it was and we didn't go to small group. I think I had to go to Emory on Tues (with my bro and sis, when we should have having fun), so that got me confused. I'm frustrated that I can't keep up with everything I need to do for myself. Give myself insulin today or do my eye stuff? nope  Poop my pants, with a phone book on, while running errands and trying to make a little money? Yep  Evalyn sure is sweet, she tries to help me so much. From unloading the car, putting on my shoes, kissing my boo boos, putting lotion on me the best she can, and just being a sweet girl, besides the yelling no in my face every 5 sec. That's ok, I always win, and she says yes unless it was a choice then she just gets in trouble for how she is speaking. She is learning so much so fast it blows my mind.


We have so much going on in our family right now. My poor Dad had a daughter, brother, and mother all with cancer and getting treatment. I have a cuz that is having some health issues and another uncle who just had back surgery. Jennifer just moved to California, which I'm so proud of and will be flying out soon if I have to wear a space suit!!!, Daniel is getting ready to make some big decisions and I feel in my heart of hearts will take him from GA for a while, I just started a new business with my art and booth lots of fun but lots of work and I Owe people money from just being broke and starting a business (hey God told me too), Jonathan's getting laid off with the potential for a couple more jobs that we know nothing about, I can't exercise due to the horror of thinking I will shit my pants while doing a zumba move, we can't find the medication that I need for when I get unbearable pain in the middle of the night and can't afford to go to the ER. Jen and Dan had to deal with that pain last week and had to take me to Emory in the morning and Daniel took me home. Thanks Dan! They want me on some pain medication everyday for something that happens every once in a while and I won't do it. I can't sleep on pain meds, heck I'm not sleeping anyway. I did sleep last night because I took something and I almost wet the bed. No kidding. My feet, ohhhh my poor poor piggy feet. I will force myself     to post a pick of them tomorrow. Please no suggestions, nothing works, it's the heat and the steroids. I suppose if I sat all day they would go down some, but I can't do it. Babysitters have been difficult to find and keep right now, but I'm glad to be at home when I can when the treat of the hospital is always looming.


Ummm .... something positive. I sang two songs at an open mic night last Monday night when my bro and sis where in town and we had a yummy dinner at the Grit. I'm planning on trying to sing at least 2x per month and build up to a 1/2 hour set. Jonathan had a great guy trip this past weekend which he deserves even more than that with all he has to deal with. My Pop seems to be feeling better and Evalyn finally said Granny.... clear as a bell. My cuz and I have plans to take the kids to the children's museum next Thursday and I sure hope it works out. I continue to meet people that I seem to be able to help and inspire for Be the Match, the Lord, and just that I'm living in general. Meet a women today that is going back to school for Behavioral Sciences, which was on, and maybe still is one day, for behavior sciences. I was able to discuss services for her son that has autism and talked to her about how God showed me to go and do my art at this point instead. I'm still working on getting people to sign up for the be the match run and raise money. I have a lot of exciting art ideas that are just pouring out of me that I can't keep up. Daniel and I are getting to go to the Monastery in Conyers basically for free because I called about my situation and they had two spots available. Please pray that this renews my strength and provides some healing and Daniel finds what he is looking for under God's direction. If I live the next 6 days, I will have made it to 32... going on 70. People ask what I want something. Lows, roof has to be fixed, hobby lobby, kroger, gas, Inokos, i tunes, vacuum, dusting, babysitting, cooking, and another year to be with my loved ones. Mostly, prayers. Liquor is good too. A good Scotch. I have way more in common with them right now than people my own age. Although, I am starting to meet with other moms and kids and that has been fun. I'll try to post some pics soon of our last play date. It was 3 boys and one girl this time! 


I have to go to Emory tomorrow... Just pray that I'm in and out without any changes this week and they just leave me alone for a little while. I'm requesting a week off, or demanding. Just one week where I don't have to go there and do something else on hump day.One less co pay, parking ticket, and gas.
 I need onion soup.  

Medical update 4/14

The first appointment with Dr. Munson, the orthopedic, was very interesting. Of course, I didn't get seen at my appt. time, why would anyone?  I felt like I said that same thing to three different people, the Dr. being the third. The first guy was super dupper cute, I meant to take a picture of him for my mother. I skipped out on taking a pic of me and Jill too :(. Guess you'll just have to live with the fart pics of my knees. The second guess I guess was the assistance, NP, or something, and looked like he needed mouth to mouth, by someone else. Dr. Munson, weird right eye, nice smile, doesn't feel that my bone infarcts (sounds like infarts, like I need more gas!, He thought that was funny), are causing the pain at this point. It's more likely the side effects of the medication. I expressed that I'm taking some PRN medication but not the everyday time release medication and I would rather go through the 5-6 hours of horrible pain then pay a 100 copay to get IV pain meds at the ER and risk getting something worse. He agreed that he would not either if the pain was not horrible everyday but then asked me if I was always this stubborn. I told him, yes,  he hasn't seen anything yet. I did mention that if the pain continued to increase that I would try the time extended. So then he said " So your stubborn, not stupid.". precisely. He said that the radiology dept at the hospital always makes it sound worse than it is, fyi, radiology is my least favorite part of Emory. Don't promise me food and not back it up!!! He does feel that I may need joint replacement eventually, but we will see. He felt that getting another bone density scan asap would be good and also getting my Calcium and Vitamins D checked again in a month. I explained that I'm going through early menopause and that my OBGYN has me on hormone replacement that should be helping my bones but with so many steroids and meds it has not helped. We may consider a more natural approach to hormone therapy. Dr. Munson, then surprising said in jest, " So now your stubborn and bitching." Thinking of the Seinfeild episode  where Elaine is concerned about her permanent record. I laughed and said that I actually pride myself in being less bitchy than most women going through the same thing as I am. I decided I liked him but not sure it was worth the $40 copay. When I return in 6 weeks we will do some more X rays to see if there are any changes. There is one surgery where they drill in to see if they can get more of the oxygen to the area that we may consider in the future. I will start physical therapy once a week, more to encourage me to keep it up at home, as soon as I get back from my trip next week... I'll tell ya all about it... so excited. Doc said I could really use massage therapy but my insurance doesn't pay for it, thanks COBRA.

My lab appointment when fine and my blood counts are doing good. The liver enzymes are reducing that they were concerned about. I saw Dr. Khoury today and we started back on the study drug, blah, but only a third of what I was taking the first and second time I tried it. We also reduced the steroids by 5mg, and I could already tell a difference with my blood sugar and my nerves. Please continue to pray that we can reduce them to the right level, I can lose some of this weight, and stop the deterioration of my bones.

After we left that appt., we had to wait on the the study drug to be processed. Than we went to the 6E where I was able to see my friend Amanda for a few min. She had bags upon bags hanging up. We need to have pole competitions in the hallway! They are going to see what another round of chemo with do and then consider a BMT. She is away from her husband and little boy, a women of God, and is in deep need of your prayers and blessings. If you feel moved by the Lord to bless her family in any other way please contact me.

The next morning, Friday, was very scary for me. I woke up with horrible bone pain. Not as bad as I had had it, but it was pretty bad. Bad enough for me to need help with Evalyn that morning and take pain medication. I cried when Diane came to get Evalyn, but Evalyn was just happy to be seeing her Poppa and eating a good breakfast. It just breaks my heart when I can't do what I need to and have to ask for more help. Pride.... not a good thing. How much more till I'm humbled enough?

My Bone Infarcts

Going to Emory today... please pray

Hi!
I'm going to Emory today to see my new bone doctor and then I will be seeing Dr. Khoury and really need your prayers. First, that that they don't admit my butt, although, I will be prepared and that what they have found already can be stopped in it's tracks so that that I don't have to have any surgeries in the near future, or ever. We have only had MRI's of my knees and they are not looking so good. Other points of pain are in my lower back and hips where they found osteopenia last year. My vitamin D levels have been very low, 9, out of 40, so my body has not been able to absorb calcium and at the same time the chemo has been taking it out. I also have pain in my wrists, hands, feet, elbows, and ankles. I would like to be able to get back to my usually exercise routine because it made me feel so much better. Also, I start the study drug again today at a lower dose. We are still experimenting about really happened last week with the stomach sickness. We ruled out C diff and CMV. It could still be GVHD or the study drug. Or it could have been a very bad stomach bug that is going around, causing me to be a hermit. Please pray that I tolerate the study drug with no rashes or stomach issues or any other side effect. I need this medication. We also get the biopopsies back today for the colon scan, please pray they are all negative.

This girl has some moves.....

Medical update 4/9 - the rest of my extended stay

I decorated my windows with the few colors I could find and steal back. 

I put this drawing from one of the students in CA right in front of the toliet.  It says I will be healed, and dance, and laugh so hard I have to go to the bathroom. 

I'm obviously writing this at different times and dates....I'm am home, sitting in my chair, took a nap in my bed today, but still do not not feel myself. When you lose a week of your life, everything just feels weird, out of wack, unorganized, like your forgetting something, missing something. I didn't blog much in the hospital because I didn't really know anything new and it was very frustrating. Half of the time it seemed like I was on the toilet, the other half I was the Easter Bunny trying to cheer  people up so that I wouldn't think about how I could eat pretty much ANYTHING. I spent a lot of time with staff that I have known for a while now,  patients that were there the same Nov 2010, I was there, escaping the hospital to go to the Michael Carlos Muesum, looking at the snapdragons, stuffing easter eggs, and meeting with PT, social workers, the colan team, nurses, techs, NP's, physicians, the boutique lady at Emory,and tellling respirtory 12x's that if do not need a breathing treatment, correcting pharmacy, through my nurse, playing my guitar, trying to understand my lab equation, and what variables are going to change this week, being scared that the hypothesis is "I don't know" since I'm such a weird case.

These were the ladies that let me join in the craft making.  .

These are flags that the Buddists make... they are all over the top of  Everest.  I made some two but made them Christian and brought some home for Jonathan and Evalyn to do.

If you don't see you name on here yet... I'm not finished. 

The square piece of paper is very neat. you put a picture, and fold up while writing prayers in it, then you decorate it with string while you are meditating or praying. 

So we have ruled out two of the four... I guess five because it could have been just a nasty bug.
The C diff and the CMV came back negative. I'm waiting to see about the biopsies, but they said that they didn't see anything. We are also waiting to see what the study drug does at a lower dose Drinking that stuff was not that bad jjust impossible to do in 2 hours. Oh, but they one of the teams leave right before me, that means they can only do one at time. I came down stairs with a mild migraine and then had to set in a room with other people getting prepped and recovering. The 12 different monitors and the florescent  light were about to send me through the roof. I finally asked if I could be placed somewhere else that I was very sensitive and getting more anxiety by the second and I was starving!! The nurse remembered me saying I was very sensitive the moment I came in so they put me back in the room where I was going to have the procedure. It was nice, quite, low light, and freezing. Ended up with a gown on, and 4 blankets, one heated. I enjoyed having some pure oxygen for a few min in a way. Weird. The staff was so nice there, but for some reason the Dr. didn't come talk to us after. I asked something about what was saying as I went under and Adam said i was talking about food.

From I love Lucy " Do you pop out at parties,  are you unpoopular?  Well all of your answers are in this bittle  lottle."  "Ummmm, it's tasty too"

Told my mom to take a pic of me after the procedure with my ears on. Not too shabby.. of course they were not running anything up my nose.

They said to stick with clear liquids for a while... ha ha. I got back to the room and downed a smoothie my mom got, 2 fish tacos, and some onion rings. My cuz Andy brought the rest and we had  good time playing the guitar singing and talking. I got you Andy.

Andy changed my guitar strings for me and it sounds great. Thanks Andy!!

I had a lot of fun being the Easter Bunny. I made a lot of people smile and they enjoyed the verses. I was able to take a walk with my friend Amanda, who also relapsed, and she now has Dr.K! My two cousins, Amanda and Kristy came to see me. Amanda and I had time to go out to eat and it was so good. We put down Easter Eggs and noticed that some them was picked up already on the way back. We also stopped by the museum again so she could see the awesome Mandala's at Michael Carols. It was great to hang out with her. Then Kristy comes and they both help me pack up and leave. Kristy use to work for Dr. Khoury and we got a picture with him and I was able to play him a song.  Amanda took me to the amazing huge Dollar Tree, then to my Aunt and Uncle house where we decided to spend the night to be able to see Scott the next day. We had a good nights sleep and I got up to fresh coffee that my uncle John was grinding.....yea yea. Then he made us amazing waffles... yum!!

Now I'm a beach bunny.

Go Amanda!! 

These snap dragons are to die for. 

Amanda is such a beautiful person inside and out. I'm so proud of her.  She bought me food thinking I was going to have to stay the whole weekend and also bought me 2 dresses that I'm collecting in ever color. Thanks Amanda.

Dr. K always wants me well enough to be able to play. 

I left Emory with a new kind of insulin, because I'm too sweet, in addition to my other insulin. So it's still 4 checks a day but 2 of each insulin. Then I started a new pill that is 4 times a day. Just wait till I write all this stuff you will be amazed. I have to make me a check list, so I will share it with you. It might help my friends. My nurse Christina and all my techs were just wonderful this week. I see the bone doctor on Thursday and Dr. Khoury is nice enough to see me on Thursday on his off clinic days just so I don't have to go down twice. Isn't that sweet? I'm hoping they are able to find out exactly what is wrong with my different bone pain and stop it in it's tracks. I'm told there is no way to reverse it, but I believe there is. Oh, I also started physical therapy. I don't know where I'm going to fit that in the schedule. My back has been hurting really bad, so please pray the the osteopendia has not gotten worse and pray for my poor teeth. I can't even get a cleaning and now after radiation and chemo my genetically incline horrible teeth are even worse. They want something like 400 for a new bite guard. Most important please pray I stay healthy and that there are no side effects to the medication, that I don't have any more GVHD, and it was just a stomach bug. I know this sounds kinda selfish, but my mom, sister Jen, and me have a vacation planned in less than 10 days to my favorite place in the world. Ossabaw Island. I really want to go. It's already paid for, and want to send some time with the girls. This week, Fay is going to help me clean up a little and start Evalyn's flower garden around her playhouse. Fay is so talented with container pots too. We are going to lay low for a while, no yoga, no story time, not too much, since I still feel weak and I don't want to get sick. Instead, I'm trying to get some kids over to play that I know are healthy. 

Thank you for all you love and support,

Heather

Medical update 4/3- Hospital Admission number... who gives a bunny tail.

Brought my letters and drawings from a class in CA. Thank ya'll so much!!! It sure makes my hospital room and my art room at home colorful and hopeful. Thanks for reminding me that God heals and that your are praying for healing. Thank you for saying a sing pretty, and that God is my warrior. Your class is in my prayers too, let me know if you want me to pray for anything specific! 

                             


       Well here I finally am, done with admissions, hooked up to fluids, got my pics up, lap top up, calm music and lamp, sitters lined up for at least the next 24 hours, still sick, tests started, first visitors and hubby gone, Easter eggs filled for staff, morning the death of my I pod and not getting to take Evalyn fishing for the first time today.... trying to make the best of it.

Conversations with Staff and Thoughts in My Head

What is your name again? (say it 10 time is my head then think) "Don't mess with the a bald bunny baby because this is my like 12th admission and I've been through hell and back,  just try to get in my way...... I'll eat you for .... well I'll just eat you." Say.... Please Bring me the comfy red chair that is suppose to be in my room, (I know I have paid for it already.) Here is a nice organized list of my meds, labeled am, mid day, pm, accordingly and it needs to stay that way, I will give myself shots thank you, no I do not want my urine or poop measured, no I want my IV on the leftside, I will be giving myself national supplements, here they are look them over......   the chair please.   Oh, hear is an Easter Egg with some candy and a bible verse. Have a nice day. Yes, I'm fine alone here... (sometimes you are in the hospital so much your family gets tired of coming and they have their own life, like work and school, and they are hurting too.)  Others will be by though, friends will go out of their way, staff will come by that I love, and if nothing else, other family will bring food, if I get bored I'll lead a yoga class or go play the guitar for someone that needs me. Or practice, paint, read, or something else to entertain myself. Or I could always get unhooked and go outside and see the flowers and meet someone cool and get them to sign up for be the match. I have the Lord, I am never alone. So by the way, I'm fine now, could I be left alone without a beep, a stick, a question, a poke, etc for like 30 min????  

First visitors getting pumped for Easter, I mean Baseball. 

My sweetie set up my room for me just like I like it..... I'm picky after being here so much, and helped me hang up stuff before running off and leaving me for a baseball game... just kidding I had to beg him to go.... Hope you have fun babe you deserve it. 

Thank you God for onion soup from Inoko's in Athens. 

                    

                    The Plan Thus Far

I saw Dr. Khoury today, nice green shirt, he seemed calm, as usual. I have lost 8 pounds, awesome, wrong way though. So here is the deal. It could be 4 different things: 
1. oral chemo- need this to live, so hopefully if it is a side effect it will go away
2. C-diff- a virus they are already treating with meds I started yesterday

3. CMV - a virus most people have, bad in BMT patients, don't really know what the answer is on this one

4. GVHD - Graft Vs Host Disease- Just got over the rash, got it in my eyes, I hope I don't have it in my gut too.... or I'm never going to get off these steroids that are cause my bones to crumble and me to be overweight. 

Funny how you have to watch what you say.... a couple months before getting admitted that first Nov 10, I complained the " I never get room service". Well buddy, I got room service for 3 weeks at the hospital."  A few weeks ago, I wrote and made the comment that I wouldn't be surprised if they made me put stuff in my ear and up my butt next. Well buddy.... tomorrow.... I get a GI Scope right up the batootie, I think that is a word. They said they would put me out, oh thanks, that make me feel a lot better, sedation is sooooo safe. 

For the bones issue we found out about the last time I was here, they are hoping I can see the doc while I'm here so I don't have to have that extra appointment. I told doctor Khoury that he was the one with the strings. 

They said something about my blood sugars but I don't know.... guess we are keeping an eye on them. 

BP is low, so they took me off the medication for now, it's because I am dehydrated. Heart rate is high as always.

Get Down Heather.... like Dance get down. Not slow down.

Plans........ I make plans, as should you, I make plans to have an art/vintage booth at a shop in the fall, to go on my trip in 2 weeks and another trip in a month, I make plans to go to Evalyn's first easter egg hunt on Sat and try a new church on Sunday, to work on her potty training, manners, and have lots of fun and plllllaaaaaayyyyy. To see the Blue Angles at the end of this month. To have an easy garden area in front of Evalyn'sappt on Friday. Will they all happen, in my condition, probably not, will some of them, yep. 

Without plans, things do not happen, things and events happen to you, but to create something out of nothing takes some creativity. That's what I like to do.... plan and organize, in my own messy way. Today, I had planned to  go fishing for the first time this year, and take Evalyn fishing for the first time. We were going to take pictures of my Granny and Pops back yard..... it looks like a botanical garden, you wouldn't believe it. Hope to get pictures or get someone to do it!!! Until then, someone catch and clean me some fresh fish because I may be starving when I leave here. 

http://www.youtube.com/watch?v=H8Q_8DvipCA-   link to video

Medical update 4/2

For those of you that don't have face book and have not heard yet, I have been sick to my stomach (like I can't go far from the facilities unless I have 8 Imodium in me). I have not had to go to the hospital amazingly since I was in the hotpital for 3 nights with nothing hardly wrong, and now I can barely move. I have been staying hydrated and started a new med, stopped the study med, and waiting to see what happens next. They said they may start me on a lower dose on Wed. May? I'm very weak and I have two sitters out this week. I'm trying to eat and drink to keep my strength up so Jonathan doesn't have to miss anymore work. That's all I have energy for now. 

Medical update 3/26- A bone in fart what?

Hi,
I know that some of you, including family, feel a little bit in the dark about last week in the hospital and what all came out of it and what all happened. To tell you the truth I'm was just as loss for words and as I said before once I put it out here, it's out, it's the truth, and well I guess after 3 sudden nights in the hospital, the death of my beloved blue iPod, and the news, I just had to pretend all was well for a couple of days. That included going to a 20's style fundraiser on Sat., doing a bunch of stuff around the house and outside I had no business doing but it made me feel good, and having company over that brought dinner and eating outside WITHOUT a stupid mask on. Watched Evalyn grow and learn right before my eyes and have everyone talk about how wonderful she is. Well, I have skipped the last two Monday's in my mind, so did Poppa, thinking it was a different day, well Monday hit hard today and I have a lot to deal with and so what if I bought two ferns I had no business touching a Lowe's. I got my Lola turtle back, HA.  So there. THERE.

Whole truth right? I'm literally crying right now because I'm just so overwhelmed at the unknown and just when I think we know what we are going to do, something happens and it changes. After the relapse, we found out that I could get the pontatinib (oral chemo from FDA)  and I was doing great, losing weight, my meds were decreasing, then BAM, rash every where, GVHD in eyes, increase in meds, molting, but still hopeful. We have been playing lab rat to figure out if the rash was GVHD or the oral chemo. Well, it's looking toward more of the oral chemo, which when I have asked well what does it matter if it is oral chemo I have to take it to save my life.... Dr. Khoury... mumbled something about maybe not. WHAT? Then BAM my blood sugar is too high and I have to prick myself and give insulin and we are not sure if this is going away or not.

As soon as I'm about to sit down and literally write myself out a med schedule for myself, Evalyn (iron,probiotics, and floride), the dogs (yogart,dental, and a shot for Chloe once a week), remind Jonathan to take his stuff to increase immune system, and the baby sitting schedules, doctors, exercise, FUN plans, etc etc. ...... I have two of the worse bone nights I have had since radiation and the BMT. Shaking, crying, calling my Poppa at 6 am crying pain. Now, I could have went to the hospital and paid what ever my expensive ER co pay is to get some IV pain meds, but i knew it would be over it at least 5-6 hours and I wanted to keep that money. Not saying I will do the same next time.

Emory calls last Tuesday and says they want me to be admitted for the night to give me some pain relief and sleep and do some tests. Code Red called and everyone pulled together and Evalyn was taken care of... Jonathan missed a lot of work, no pay there, but lots of understand caring people. Mom got off work a day early. Dr. Khoury was out of town for 2 days, that should have given me warning right there. I only took a minimal of stuff, one night right? I didn't get any pain medication till 11:30 that night and I was there at 4pm. Luckily I was not in that much pain, relatively speaking, or believe me, I would have. It was nice to see some of my friends on 6E, great staff there, and they knew me as soon as they saw the smiley face on my yellow mask. Mom and I tried to watch a movie, I kept falling asleep, she said it was dumb, so we turned it off. As you can read in the last blog, it was a lot of waiting and a lot of me taking up a room that someone probably needed.

I finally got the results of the MRI and it was what I thought they were test for. I have Avascular Necrosis. Now, I don't know if that is what I also have in my feet, hands, arms, and back when I have bone pain because in 3 days I only had 2 tests and a lot of take out food. AN is a process where the part of the bone involved ina joint loses adequate blood flow, causing the area of bone to break down. No wonder I couldn't get up off the floor without a major production. The doctor on call at Emory said there was not a way to back track, but there would be things to do to slow the process down. Joint replacement would probably be needed in the future. I'm not going to believe the whole no back track thing, There has to be something. What caused this? They say long term steroid use. I say steroids, plus radiation, plus chemo, plus tons of meds, and cancer ......SUCK.

At that point, we were waiting on what I was going to do to control the pain. We just kept waiting... my wonderful nurse Carmen was trying to get me out of there. A friend Matt showed up and we decided to break out..... I mean we broke out.... off campus to a pizza place, called everybodys. I bet you have never seen an admitted patient with an IV still in the arm, drinking a bear at lunch?? Well that was my breaking point. We got back to the room and my brother Scott who has autism came to visit me, no warning. He was fine but I had to pack up and keep getting him to lower his voice about sodas and choc easter egg bunnies because the walls are pretty thin and I was about to blow a gadget that they have not gotten a plan together. Good god, you gave me a BMT people can you not control this horrible pain that hits me in the middle of the night? Give me a shot to give myself, I'm already giving myself at least 3 a day with the insulin They offered time extended release morphine to take everyday. I took the scrip, but not planning on using it at this point. I'm taking enough everyday. My step dad Frank came to pick me up and I went home to a loving family and my baby girl asking ME to put her to bed..... then I tried to forget the whole thing. Now it's Monday, now I have to figure out what  the next step is, well, I guess we, there are a lot of you all in this with me. By the grace of God I made it to yoga this morning, only because I know that It will help me. As far as the other exercises, I'm not sure if I can do those yet or not. There is always hope.