My life saver

Today I have an appointment with Dr. Weber. I go in with my mom and my blood pressure is high and im freaking out and I have so much pressure in my head I literally think the pressure is causing me to bleed in my head and im tasting blood. I go in and he thinks maybe the high doses of prednisone is making my tissue lining in my stomach thin and im tasting blood from there. He puts me on an antiacid and XANAX. I dont know if I could have made it through this summer with out that little pink pill. It literally probably saved me. It calmed me down and I had to start out on a quarter of it and even that knocked me out. I LOVED IT. Dr. Weber was my second opinion in all of this and I dont know if I would have done ok through this without his understand and sympathy.

sore

 

I am getting all of this from a little calendar I kept, apperently today I was in significant enough pain just to write, sore back.. sore everything. I can not describe to you what prenidone does. It literally turns your world upside down. I was so depressed.

IVIG

I have an appointment at 8 am to go to Texas Oncology to see another hema becuase Dr. Periman is out of town and my platelets are falling quickly. They decided to do an IVIG treatment. IVIG stands for IV Immuno globin which is people donated antibodies. The treatment is very expensive and takes thousands of donors to make one treatment. The purpose is to see if these antibodies will kill the antibodies that are marking my platelets for death in my spleen. Im hooked up to an IV, given a bag of fluids, IV benadryl (in case of an allergic reaction) and then oral tylenol. They then start my treatment. I dont have a reaction but I have to be given a baby heel warmer becuase the fluid is so cold going into my arm my muscle is cramping. Meanwhile I KNOW I need to be sent to a rheumatologists that something is definitely wrong and no one besides Dr. Weber wants to listen to me. So today, Im having all these side effects of prednisone, ive gained about 20 lbs in a few weeks becuase of it, and my face IS HUGE! And I dont mean just kinda swollen fat i mean HUGE. I looked deformed literally. I couldnt wear my contacts becuase the prednisone messed with my vision and my face was so fat my glasses squeezed my head and gave me headaches on top of all the other things I was dealing with. I cant win.
After coming home very exhuasted and taking a nap, I wake up feeling like I have allergies and a slight cold, other than that im ok.

The killer prednisone

O yes, I am def getting my busy work done. My house is spotless, I cant think straight to do my own bills which I have done for 7 years with the same ones over and over basically. I even cleaned out my dryer hose. YEAH. I cant sleep, Im mean, I cant be around more than one person at a time, people are moving to fast around me, and im losing my mind. Then I start getting these crawling feelings inside of my head. Seriously what do these people have me on? O and I have steroid acne all over my fat face and back.. UGH

Scary

I had a CBC ran at the community hospital here instead of making the drive to Amarillo, and my results, my platelets have dropped to 33000. WTF is going on. Now im freaking out and calling Dr. Weber and saying OMG im going to bleed out and alskdjflkas djflkjaselkrj is how I sounded to him im sure.lol My hematologists obviously started kind of frekaing out too and decided that maybe the prednisone was slowing down the rate at which my platelets were falling. So here we go with prednisone again, up to 80 mg a day. The highest recommended dose. Now heres a tale to be told.

Spleen scan

I had my liver/spleen scan today to make sure that my liver was working correctly and that my spleen wasnt enlarged or anything abnormal. It wasnt everything came back just fine. The problem with today was my body hurt again. My hips and back were killing me, no one told me that coming off prednisone hurt just as bad as getting on them. The reason for that is my body was inflamed and we didnt know it, so when I started the prednisone it kind of threw my body into shock becuase the inflammation was being halted quickly, and coming off of them lets the inflammation hit suddenly. NO FUN. I dont even like taking tylenol or anything like that and I started having to take hudros to deal with the pain.

Lower platelets

On that next Tuesday I had another appointment with Dr Periman and Valerie ( my hematologists and nurse) only to find out that this emotional roller coaster I had been on becuase of the prednisone hadnt been working. I started out at 50 something thousand and had dropped to 41000. Normal range is between 150-450 thousand. Ok so what now? My hema says well maybe your just going to be a litttle harder to treat. He decides the prednisone is not doing anything for me and I can start coming off of it, so he reduced me to 40 mg a day. O and he casually mentions that they can take my spleen. EXCUSE ME dont I need that? Well turns out you really dont HAVE to have it. When I think of a spleen I think of a frog taste tesing bugs. Your spleen is what starts your immune reaction by "taste testing" your blood for anything abnormal. So basically, my body is marking healthy spleens to be killed and during this taste test, my spleen is killing them and mounting an attack against them. So yes my spleen was doing its job, but they still may want him dead.

Vacation

How can a 4th of July and getting a neice on the 5th of July suck? I dont know but it did. I was an emotional wreck. I cried I dont know how many times and I DO NOT cry. I have to be completely broken to cry and I cried just becuase I wanted to come home. We ended up coming home a day early becuase of me. I felt so bad becuase Cody hadnt got to see his brother in so long, and Mechell had barely gotten out of the hospital, but I just had to come home, I didnt know what was wrong with me.
The picture is from vacation.I had been on prednisone about 3 days and was starting to get the emotions from it.

Chest pain

I have go to into Dr. Weber again because im having chest pains. We think that I may have either pericarditis caused by the prednisone making my tissues thin and blood leaking around my heart, or maybe its in a way heartburn coming up from my thin stomach and esophagus. At this point I really think I may die. I cant handle much more. Im scared of having my spleen out and I cant get comfortable with the rituxan treatment idea. I am told over and over to try it. I will be ok. I dont want to do it. We scheduled an echocardiogram to look at my heart. At midnight this night im still up debating whether im going to do this treatment. Im so scared and I cant figure out why?

It hurts

So on Friday morning I take my first dose of prednisone and we decided to take Cody's planned vacation time and go to Port Neches to visit his brother and his girlfriend that would be having a baby over the 4th of July holiday and I really wanted to be there for that. We scramble around packing and finally get out of here around midnight. Cody drives for awhile and then its my turn. By the time we are almost there my body hurts so bad everywhere to the point I wanted to cry. Even the muscles in my hands hurt so bad I didnt want to move my hands. We finally make it there and all i want to do is go to sleep. Which finally after catching a nap, I feel completely normal.