Tuesday, September 15, 2015

September is ITP awareness month

    Earlier this year I wrote about my ITP struggles this year. Seriously?! I'm in the hospital... and My ITP journey. Well, September is ITP awareness month. ITP or Idiopathic thrombocytopenic purpura
is a rare autoimmune disorder. In autoimmune diseases, the body starts an immune attack toward one or more organ systems and in ITP patients, platelets are the target. Platelets are tiny blood cells that help your body form clots to stop bleeding.

    A normal platelet count is between 150,000 and 400,000/microliter of blood.  If someone has a platelet count lower than 100,000/microliter of blood with no other reason for low platelets, that person is considered to have ITP.

    With few platelets, people with ITP often have bleeding symptoms such as spontaneous bruising, petechiae (pe-TEEK-ee-ay), tiny red dots on the skin, or for women, heavy menses. More severe bleeding symptoms include blood blisters on the inside of the mouth, blood in the urine or stool, or bleeding in the brain.

    Treatments for the disease vary depending on the platelet count, severity of symptoms, age, lifestyle, personal preferences, and any other associated diseases. Some of the treatments are antibiotics, anti-D  treatments, chemotherapy, corticosteroids, splenectomy, and more. However, some people may choose to not treat their disease and live with low platelets.

    While most cases of ITP are controlled, it can be fatal in a small percentage of ITP patients.

To read more on ITP please visit these sites:
www.mayoclinic.org
www.itpfoundation.org
pdsa.org


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Saturday, August 15, 2015

We don't grow when things are easy; We grow when we face challenges.

     A lot of people ask me how we are doing and generally the answer is okay. With everything that
has been going on lately, we have obviously been effected but we are doing okay. Still, we have changed. We are different people then before this started. I cannot speak for my sister, who I have seen grow leaps and bounds. I cannot speak for my grandmother who is our rock and has taken over driving mom to and from her doctors, making all appointments and handling pretty much everything. She is amazing, I hope to be half as strong as she is. I cannot speak for my fiance who has had to, not only work all day but then come home and take care of me and our daughter. He's had to be strong enough for all three of us on the days I could only muster enough strength to be strong for Mom. I can however, speak for myself and Haleigh.    
     Haleigh has changed in some minor ways that I guess when you think about it aren't that minor. It started with her never really having attachment issues but since February she has had issues being separated from us. Sometimes she will cry when Tyrone goes to work (which is abnormal) and worry about him getting there safely or not coming back. If I have a doctor's appointment to go to, she worries they will 'keep me' and I won't come back home again. Then once we do get back home she is attached to our hips. She needs a lot extra hugs and cuddles lately, which of course we don't mind giving. One thing that I really noticed was how Haleigh use to yell (in a joking way) at my mom when she would call her a drama queen and/or a cutie pie. However, after mom had been in the hospital for awhile and could finally talk again Haleigh relished in her grandma calling her a drama queen. Now anytime that she calls her a drama queen or a cutie pie she gets a huge smile on her face and says 'thank you grandma.'
     In the last few days Tyrone has not been feeling well, which is very unlike him. He gets sick usually only once a year, so Haleigh is not use to him being under the weather. He laid down on the couch and fell asleep and Haleigh wanted me to call an ambulance because she was convinced he was dying. I explained that not all illnesses are as serious as grandma's and that daddy was just not feeling well but he would be okay. I don't think she believed me because she took her chair and put it right in front of him. She sat in the chair with the kindle, which she barely looked at, for an hour. About twenty minutes in to him sleeping she sang him 'You are my sunshine' (which is her go to when she is upset or tired). After she sang to him she looked at me and whispered 'are you sure we shouldn't call an ambulance?' It was heartbreaking. I kept reassuring her that just because daddy was sick did not mean he was the same kind of sick as grandma. Daddy did not need to go to the hospital because he was only a little sick. Needless to say she did not sleep well at all that night. However,she is handling it better now because it has been a few days and she has realized he's not going anywhere. Then there is something that happened just yesterday. Haleigh had a friend over and he wanted to play doctor. This is a game that in the past she has loved playing. She started playing doctor with her friend but he said something like 'the ambulance will come get the patient because they are dying' and Haleigh said 'I don't want to play anymore.' She got really upset and came and sat on the couch. I asked her why she didn't want to play the game anymore and she said it made her sad and she just didn't want to play that game. It took her a few minutes of cuddles before she would go play something else with her friend. Lately playing doctor has been a favorite game but only when she's playing with grandma or a stuffed animal. I tried playing it with her recently too and she wanted to stop because she got upset. I think she is just really confused about how she is feeling. It is a lot to take in for anyone but especially for a little one. I know the experience is making her a stronger person and definitely educating her about health issues but sometimes it just sucks.
     I have been feeling very overwhelmed and depressed. I find it at times very hard to keep my head
above the merky water of depression. I feel just like this picture, as if there are things attached to my feet pulling me further and further into my depression. Some days I can get up and I feel like I will be okay and some days I wake up and I do not have the want to get up or do anything. Of course, I have to, because I have a child to take care of - along with the other children that I watch. At any point in time I have a thousand things going through my head. Lists of things that need to get done, for me, for my family, for my house, for my grandmother, for my mother, for my sister, for my cousin. Those wonderful 'what if' questions that take me back months or months and years in to the future. There are so many, that I could not even begin to list them. My depression makes my anxiety higher and my anxiety and depression cause my endometriosis pain to get worse. It is all a horrible cycle that is not ending any time soon. I try to put on a happy face for those around me. Adding me being depressed to the things that everyone has to worry about is not something I want to do. I don't want it, so I certainly don't want to burden anyone else with it. A lot of the time I get annoyed with myself for being depressed. I know it is not something I can help and I have discussed it with my doctor, we both feel it is a situational depression because I was doing well before this. It is great and all to know what is going on but another thing for that knowledge to stop it from happening. The situation is not one we can rid of until it is over and done with so, it is what it is for now. Along with depression, I am also having some very vivid nightmares. Most nights, unless medicated, I have multiple nightmares of my mother dying. Anywhere from 2 to 5 different ways/times a night. I wake up crying, fall back to sleep and she dies a different way. Obviously, I am not sleeping well and it is not boding well for my attitude or outlook on things. I am terrified I will receive 'that' phone call. The one I received for my step father and my father. The one where I cannot remember the words but I can remember my brain going fuzzy and numbness. The one where I'll hear that my best friend is gone and never coming back.
    I wanted to write this for everyone who keeps asking 'okay, but how are you really?' In a nutshell we are scared and nervous with hopes that the sun will shine soon. Things seem to be on the up-slope and we hope it stays that way. All in all I think we are doing okay. We are surviving what is happening but we are not unscathed.



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Friday, August 7, 2015

The ONE thing that has not caused a problem is now causing a problem - a mom update

     I haven't written an update on what is going on with my mother in a while because I've been overwhelmed. Either there is nothing going on and I am waiting for the next thing to happen, or the next thing is happening and I am too consumed with it all to write about it. Then by the time it is over I'm exhausted, mentally and physically, to do anything but, roughly, go through my daily routine. So, while I have a minute I want to update you all on what has been going on the last month or so.
    On July 14th, Mom went in for surgery on her throat. The doctor was not at all concerned about this surgery, however, Mom was. She was, for a while, convinced she was going to die during this surgery. She had speeches prepared for us for before she went in. I told her she could tell me she loved me but to the rest I said "knock it off." It was too much. Too much to think about, too much to handle, just too much. She did great and came out of surgery feeling pretty good. Her doctor said that when they went in, it was worse then expected but when they finished, the end results was better then they had expected. During her follow up visit a week later her doctor was VERY impressed with how she was healing.
    On July 30th Mom had an appointment with her regular doctor because she had ear infections and a fever. When we got to the doctor's office her blood pressure was pretty high. They were going to send her home with an extra blood pressure medication but I voiced my concern over how high her blood pressure was. Last time it was that high she had seizures. I wanted her admitted to the hospital because it was so high. The doctors didn't feel the same way, they really thought that another medicine will help. Honestly, doctors (or at least the ones we have encountered - other then Mom's ENT doctor) do not like when anyone other then the patient have input. I asked them to retake Mom's blood pressure, I got a grunt then a sigh, which was followed by a "You are right. We will be sending her to the hospital." Mom's blood pressure was extremely high, so she was sent to the emergency room and then admitted. They also found something in her blood work that was elevated, which indicated an infection somewhere. While she was in the hospital those numbers came down along with her blood pressure after adding two more BP medicines and she came out Saturday Aug 1st.
     On Tuesday, when I stopped by to see Mom she was having a a lot of trouble breathing. She was taking very shallow breaths and it scared me. I told her we should call her ENT or take her to the hospital. She said that as long as she was not moving around she would be fine once she calmed down. She did not want to go to the ER, she had an appointment with her ENT on Thursday and was hoping to hold out until then. Her home nurse was scheduled to come the next day and once she calmed down she was breathing okay so I didn't fight her on going to the hospital. I figured if the nurse thought something was wrong she would do something about it and until then I told her not to move.
    Wednesday, August 5th Grandma called me to tell me that they had called an ambulance and were taking mom to the hospital. While the nurse was there mom's oxygen levels dropped pretty low from her just moving from one side of the couch to the other. I was scared and anxious because I did not have a car immediately available for me. I called Tyrone to come get me as soon as he could take a break at work. Once we were there and back with mom I was a little better until they started talking about what could be wrong. More things of the same, I can handle. I was not prepared to hear that something may be wrong with Mom's heart. The first thing that was mentioned was that Mom possibly had congestive heart failure. All her signs and symptoms pointed to this. However, it was not a definite diagnosis. They did two echocardiograms (ultrasounds of the heart) in the ER while they were waiting for a room to open up because she was definitely being admitted. The second ultrasound tech did not seem to think the same thing as everyone else so I was holding out hope that it was not congestive heart failure. Once Mom was admitted and went up to her room a team of doctors came to introduce themselves. The hospital Mom is in, is a teaching hospital so you have an attending doctor (head doctor) and residents (student doctors). He had them poke around and take guesses as to what they thought was wrong with mom and again they guessed congestive heart failure. They had not yet gotten back the results of the Echocardiogram so they had no definite, nor were they cardiologists, so they were just taking their best guesses. This unfortunately was how I had to leave that night, with no answers. The next day was more of the same, testing and guessing. This day's diagnosis was pulmonary edema. It did not sound awesome either but it was not congestive heart failure so my anxiety level went down a notch or two. No matter what she had, the plan was the same, get the fluid off her lungs and bring down her blood pressure. This diagnosis did not stick however. The final diagnosis (I say this, of course, but it could always change, though it has been the same for a few days now) was moderate diastolic dysfunction which, when you google, everything comes up as heart failure. I hate google sometimes. The way it was explained to me is her high blood pressure was causing heart problems, and the heart problems were causing fluid in the lungs, which was causing the breathing problems and leg swelling. So the plan is to change blood pressure medicines to something that actually works and a water pill to get the fluid off her lungs. 
     Today is now Monday, August 10th and hopefully the plan is for mom to come home. This morning she had an ultrasound on her kidney's and I am waiting to see if anything comes of that or if she is still headed home today. Also, I am hoping they have done a recent chest x-ray to check on the fluid in her lungs, if not that is what I will be requesting when I get there. It does not make sense to send her home without seeing if the water pills are working right? So, this is what has been going on with us. Please continue to keep us in your thoughts and prayers. 

Sunday, April 26, 2015

Dewey's 24 Hour ReadAThon

I wanted to post this here because it is 22 minutes until the 24 hour mark of this read-a-thon and I just finished my 11th book. I am spending the last twenty minutes cheering on fellow readers.

11 books, 1,476 pages, 24 hours!!!






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Monday, April 13, 2015

My ITP Journey

     Friday, April 3rd was my last infusion of Rituxan. I did not really do a lot of blogging about my experiences but I wanted tom make sure I wrote down some of my feelings and side effects so if I ever have to go through this again I can remember some of the small things.
     On March 13th I  received  my first round of Rituxan. I posted about there here. The medicine had to be stopped twice because I had a few reactions. At some point between discharged from the hospital and my next appointment I started having a really bad pain on my right side after I eat. The pain would get really severe about fifteen minutes after I ate anything. It felt a LOT like my gallbladder pain did in 2001.
     On March 20th I went in to the cancer center to receive my second round of Rituxan. Before I got the medicine though I went to go talk to my doctor. My numbers were up but she was really  concerned  about the pain in my side. She was thinking it was possibly stones - which you can get despite not having a gallbladder. Which is ridiculous. She scheduled me for an ultrasound that I would have to make a follow up with my regular doctor. After that I was put in a private room - which is always nice. My Rituxan was mixed in with Saline to hopefully help me have no reaction. Plus we went up by only 50s. The medicine took about 5 hours. I was NOT expecting it to take this long but I had no reactions so whatever works! Afterwards I would feel tired. About Tuesday I started really feeling nauseous and start feeling better about Thursday.
     On March 26th I had my ultrasound and my follow up doctors appointment. They did not find any reason for my pain in my right side. It was not stones, which is good. Except they have no idea what the pain is from. They said that my bilirubin was elevated in the hospital and so he was  concerned  about my liver. They checked my bilirubin again and the number was lower but it was still elevated. He said i needed to hydrate extra and see if that helped. He and his attending truly felt that the pain that was in my side was a side effect of the Rituxan. It is not a very common side effect but it is documented. 0.6% of people experience stomach pains after the medicine. He said right now they are just going to treat the symptoms but if I continue to have the pain two weeks after my treatments then come back and they will  reassess.
     On March 27th I had my third Rituxan treatment. This time I was put in one of the round rooms. It was also my first time doing one of the fast track medicine. The medicine was only suppose to take 90 minutes. I was trucking along with NO problems then I got to the last 50ml and started having a reaction. I got really itchy all over, my head, my arms, my chest, my throat. They had to stop it and give emergency medicines -steroids and benadryl. It sucked because I was so close to not having a reaction! But I made it through. I was  exhausted  after leaving this appointment because I had extra benadryl in me. Oh and before I go on to what happened after this appointment this is where I met a beautiful uplifting woman named Kelly. She put such a smile on my face on a really hard day. She has such courage and strength. Her love in the Lord is so strong. She was such a bright light - I am lucky to have met her.
     Over the weekend following this appointment I had a few really bad nose bleeds. I was in DC so I didn't call my doctor until Monday to let her know. I was not too  concerned  but any bleeding is not a good thing for me, so I had to let her know. She decided for me to come in the next day and do a quick CBC. My numbers were steady at 155,000. The first time I was actually in a normal range! Very exciting.
     On April 3rd I had my last Rituxan treatment. Before the
actual treatment I had an appointment with my Doctor. She said things were going well and I could come back to see her in three months unless there was a problem. After I got my CBC results (the same as on the 31st - 155) I went down to get my Rituxan. I was in the COOLEST room. Two walls were windows so I could see everything. I think my nurse was amused at how very amused I was with this room. A great room to keep my mind off of everything. Again I was put on the fast track medicine and I do not think it was even noted last time that they had to give the extra medicines, so I made sure to let my nurse know. I told him I would do my best not to be the problem child. I failed. About 2/3rds of the way through I started getting itchy. It was not as bad as it was the first or third time but still itchy enough I
had to tell someone. After I told my nurse and while I was waiting for the doctors to come back with a decision on what to give me, I went to the bathroom. While I was in the bathroom the port on my IV came loose and I dripped blood all over the place. Seriously, I am the problem child. Like I said I failed, haha. So once I was cleaned up and sat back down, the order came back that I could be given benadryl (thank God, no more steroids). I was a little under 100ml I think when I started getting itchy. So once I was given benadryl I did not have much longer to finish my medicine. I am so glad I will not have to see this on my medicine bag for a while - hopefully not forever!
     After every infusion I would be super tired for a day, then all weekend I would be at like 80% but tired. Starting Tuesday or Wednesday I would start getting really nauseous. And after every meal I would have that sharp pain on my side.
     It's been ten days since my last treatment and I still have the pain in my side but not as severe, I am still a little  nauseous  but not enough to take a pill every day, and I am getting less sleepy. However, a few petechiae spots have shown up in the last few days. I'm watching to see if they go away or if more show up. I am hoping it is just a fluke.
    So that is my journey so far with the Rituxan. I wish I would have documented it better last time I took it because I do not remember anything other then some of my hair fell out and came back really thin in that spot.
     Until next time...








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Tuesday, March 31, 2015

Endometriosis Worldwide March

Worldwide Endo Walk 2015
Washington, D.C.


     This year for the EndoMarch we were more prepared, we got a hotel room in D.C. for the whole weekend. Last year, we got a hotel room outside of D.C. and only for the night of the march. This year we were much less rushed, however, you cannot account for everything. This year is was not nearly as cold as the year before but because they did not want us to have to freeze like we did last year they moved the pre-march inside a hotel. Thank goodness I
checked my facebook page right before we left because we were going to head to the designated spot in the park. Apparently, there was a lot of confusion because there was no one at the park directing people to the hotel or they were giving wrong information, I'm not sure, I am just grateful we were at the hotel. I met up with some of Team Virginia and I jumped in as many pictures as humanly possible. Last year I had NO pictures with Team Virginia and I was NOT about to let that happen again. Last year I was in so much pain from walking to and from and being in the car, this year I was well rested and ready to photo bomb as many pictures as I could!
   
     Once everyone, or the majority of people were there, we heard from a bunch of different precinct managers, wonderful ladies who told us their stories. Needless to say I had a lot of tears. It is amazing how different, yet exactly the same all of our stories are. One woman (who is also a doctor) reminded us to remember that doctors are human too, they make mistakes, they are not God. I think that is so important to remember. Sometimes it is hard to remember that these doctors do not know it all. That they are just regular people too.
   
     After we heard from everyone, we got on buses and headed to the park.
My group got separated, which I guess is to be expected since we had 13 people. Grandma actually opted to stay at the hotel and wait for us to come back. So, the majority of my group got on one bus and my two cousins and I got on another. We kind of circled the capital building and got dropped off at the park- into a sea of yellow. This is the part where it got very confusing. At one point we were  definitely  with Team Virginia. Then something happened and I seemed to lose the whole team. I don't think that we were going the right way because the walk was much longer then it said it would be, we crossed a ton of streets (which is not really march appropriate right? I mean the theory is to
stick together. No?), and we had to go up stairs. People in wheel chairs were having to get out of their wheel chairs and walk up the stairs. I just think things got confused because there was a last minute change of where everything was going to be because of the weather. Other then being exhausted, it was a great march! We came together as a group. I felt more united then we did last year. This year everyone was cheering and yelling. We were getting cars to honk their horns. It was very exciting! There was much more participation this year and it felt amazing!
   
     Once we got back to hotel we received our medals (this still really excites me!), ate, and
danced the night away. It was a great night where we could listen to other women's stories, we could make new friends and see friends we made the previous year. A night where supporters could come together and talk, because that is super important too. This disease does not just do us in, it also puts a huge toll on the people who support us. I ask my family to come to the march not just to show support for me but to support them as well. It is not an easy task to take care of someone who is not able to take care of themselves. It can be extremely frustrating.
   
     The march was a great  accomplishment! I was very excited about the turn out, not just in general but for my family; I had 12 people there supporting me. 12!! That is amazing! I am so lucky to have so many great people behind me. I cannot wait to see what is in store for next year.
3 of the babies didn't belong to our group but how adorable are they?!




*I have major brain fog right now, so if any of this does not make sense, I  sincerely apologize*


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Saturday, March 21, 2015

[Some of] My Supporters

     As we all know by now March is endometriosis awareness month and on March 1st around the world people wear yellow to show their support. Here are some of my supporters this year:

   

    


     


     


     

     



     


     

 

     


     
 
     

    


 
Happy Endometriosis Awareness Month!!!


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