SOML

On December 4th I went into another Sickle Cell crisis, the worst of my life. My husband had just gotten off of work and I was trying to wait until my OB appointment that afternoon. I could not believe the pain. I thought I had some weird form of sciatica which caused me to be unable to walk but by Wednesday, my mother-in-law had come home from lunch and found me sobbing and delirious from the pain and demanded I go to the hospital or she was calling 911.  My husband had just pulled up and I somehow made it to the car with the help from him and his dad.  I never even thought this pain was related to sickle cell but all my lab work came back verifying I was having a crisis and my blood pressure and heart rate were so high they told me that if continuous morphine did not work I'd be delivering my baby the next day.  I did not sleep, I literally couldn't move because of the pain, my husband had automatically brought our bags, but I figured we wouldn't need them and with ...

If you are keeping count, 32 weeks has come and gone and now I am being told to hang on until at least 34 weeks. Considering that I am in significantly less pain now since the blood transfusion, I believe I can do it physically. But mentally I have hit a block a few weeks back where all I did was cry over the guilt of wanting little man out and being exhausted from the amount of things that are happening during this pregnancy. I am so hard on myself but I find solace in the fact that I have handled this situation with understanding and determination; what mother wouldn't? I tell myself "one day at a time" or as on Finding Nemo "just keep swimming" and rely on close friends and family for that extra boost of support. I am holding out and taking it as easy as I can but as some symptoms and pain decrease, others ramp up their efforts which are a normal part of pregnancy. I have a list of complaints but I will save it for those unsuspecting sympathetic ears. --Yes,...

So while I use this blog so that people who know and care about me can keep up to date, I often find it  tedious to keep explaining things. With that said I'm keeping this one short.  I was recently hospitalized again. I went in because of the pressure I felt to my spleen from the uterus and was riduclously scared that it was going to burst randomly. While in the hospital my spleen was checked and is still at 16cms, but my blood levels dropped dramatically and I had to get a immediate blood transfusion. It has also been decided that I will not be delivering vaginally due to the amount of pressure my spleen will have to take during pushing. This news did not make me happy. I was given steroids to grow his lungs and we are waiting to hit 32 weeks before a scheduled C-section. The hope is that I will be able to live with the pain until then, but at this rate, I'm not optimistic about that at all. The pain is astronomical and the more I deal with the pain the more upset and angr...

A few people have asked me am I going to be able to deliver vaginally. Now, I did think that I had addressed this in one of my previous blogs, but maybe I didn't. So here is the deal. Because I have Sickle C Disease, I am at a greater risk of clotting. And due to the risk of clotting associated with c-sections, this doubles my chance of clotting in my limbs and even having a blood clot travel to my lungs (pulmonary embolism) which could kill me. Therefore, I will be induced and delivering vaginally unless my team and I decide my life or the baby's life is at risk.  So, for those of you who automatically assumed I was having a c-section, you assumed incorrectly. We are getting this little man out the old fashion way!

I just spent 3 nights in the hospital....again. This time I knew the pain was inevitable but I did not expect it to progress so quickly. I had been feeling lethargic and having moderate pain since last weekend (the 15th) and knew the new cold weather was to blame. I went to a routine growth ultrasound on Tuesday for baby and the ultrasound was so painful on my left side that I nearly jumped off the table. The ultrasound tech mentioned it to my high risk specialist and he was concerned. He told me that my uterus (and baby) were pushing up against my enlarged spleen so the pressure is causing the increased discomfort and pain. I asked how baby was doing and he tells me, "It's not the baby I'm worried about."  The plan of action was to go in to the hospital if the pain was too much to bear at home and to make sure that he was contacted. I was told that I needed to make it through Thanksgiving (as I mentioned in my previous post) and that baby would be born in December ...

I was at a routine growth ultrasound yesterday (I have them every 4 weeks) and was totally surprised when I was able to have a 4D experience. I was very glad my husband was there as we just stared at our baby's face. No skeleton-hollow face to wonder at anymore! I'm so in love. It's sick. :-) On a less than enthusiastic note, my uterus is now pressing into my spleen and they are not sure how much more pressure it can take with it already being enlarged. I was told to make it through Thanksgiving, but it looks like I will be induced mid-december.

Whenever little man is ready, he can come. Sure, sure, that may be awhile, but I'm waiting. Why? Because I hurt 90% of the time I am in pain. I have been in the hospital more than I'd care to count at this time. And even though I want him to stay in until he's ready, he's competing with my enlarged spleen and liver and has made contact. Can you imagine being kicked an enlarged organ? Not to mention that he may be snatched out depending on how the rest of the pregnancy goes. Just great. Whenever and however he arrives I can't wait to meet him.

I have to say that I am sick of being sick. Tired of the hospital stays and doctors. Tired of well wishers and concerned emails, texts, and phone calls. It's not that I don't appreciate them, it's that I am constantly having to remember all the drama of this pregnancy. I live it everyday.

FML

Everyone wants to know what the heck happened last week (4th-10th of September). So here you go! I had been in a sickle cell crisis since last Monday and on Wednesday the 7th  I finally went to the ER for what I assumed would be for a few hours of oxygen, fluids and pain medication. I had been in the ER about 4 weeks ago and since then the abdominal ultrasound showed that my spleen had grown 6cms which is the cause of my ridiculous pain. Long story short I was transferred to a Denver hospital and was told I'd need to have my spleen removed. They had the top people in sickle cell and high risk pregnancies at the university hospital for the state of Colorado and said now was the time to have it removed since I am in my 2nd trimester and there is a possibility my spleen will destroy valuable blood that the baby and I need.  How scary. I wasn't allowed food or drink (horrible that's all I could think about is food as baby kicked around in there) and was constant...

Almost a month after my last post I have decided to post something else. Nothing informative mind you, unless you care about my health and well being. ha! So, I am positive that I am growing a Stewie Griffin and he is trying to kill me. This has been confirmed by our latest ultrasound which showed a boy. Great. Now that those suspicions have been confirmed and I still can't rest easy at night. As far as the sickle c disease is concerned, I have been to the ER twice in the last week for at least 6 hours at a time getting fluids, oxygen and meds. They've performed an abdominal ultrasound and what seems like a million vials of blood to see what's going on. Yeah, all that just so they can tell me I'm having a sickle cell crisis. Go figure, I think I knew that when I came in. I was in so much pain I couldn't sleep. The emergency backup of pain meds did nothing, fluids did nothing, rest did nothing....get the point? I will say that I am actually looking forward to lab...

Notice of Disclaimer: I am writing this out of frustration. Not necessarily toward one person but toward many, so if you know me, don't take it personally . I am constantly surrounded by people who do not understand the nature of Sickle Cell Disease, in particular Sickle Cell Anemia or Sickle C Disease. Most people don't even realize what these illnesses entail or how it affects a person.  This is where I come in. I seem to be the banner person. The one tokenized, poked and prodded for information or, better yet, ,the one left to defend myself, my treatment, my sickness, my absences from other people's lives, etc. And. It. Gets. Really. Old. Really. Fast. I know one other person with sickle cell in my circle of friends and acquaintances and I don't know how she does it! ----Now for the kicker---- Being pregnant with sickle cell and having to defend treatment, sickness and absences all while being incredibly hormonal and mostly disgruntled is even worse. This is...

We found out we were going to be parents almost a month ago and although the news is very exciting and was planned, it is also daunting. We face major obstacles due to me having Sickle C Disease and how the pregnancy will affect my body.  So far, it hasn't been too bad. My major complaints with Sickle C are always that my spleen hurts, that I just don't "feel good," fatigue, and joint aches and pains. While my fatigue seems to be extreme at times with me sleeping horrendous chunks of time, I am willing to say it has not been unbearable. I am still able to keep up with my fluid intake and prenatals. I think the most interesting problem that I have had so far, and one that has just started recently, is hip and pelvic pain. For example, my hips and pelvic area throbbed all night and into today with almost unbearable pain. At 8 weeks pregnant, this doesn't seem to be "normal." I suppose this is something we will have to discuss with my many doctors ;) Yes,...

And here it is. After just one or two youtube videos on how to do the crochet stich; the finished product. Yay me!

It has become very apparent to me that my life has morphed into someone else's.  The things that I used to find easy, have become difficult. The stuff that made me so happy, like putting the finishing touches on a music track, have become meaningless.  It's very hard to maintain your sense of self when you battle with your disease every single day.  When your disease decides whether or not you will feel up to going out with friends, make it to class, or get out of bed. For a long time, it never affected me. I just knew there were certain things that I couldn't do like go to the top of Pikes Peak because of the altitude. But I never let those things bother me. Now it tells me what I can do. It rules my life.

Today I went in to have the dreaded stereotactic biopsy and after they prodded and prodded trying to find the suspicious cluster of calcification they couldn't pinpoint its location. I was on the table PRAYING I did not have to have that gigantic needle put in me.  I had family and friends praying for me.  The power of prayer is REAL They finally took me to another room and did several more shots on the mammogram machine and determined that the cluster is not in my breast AT ALL . Thank God! I don't have to worry about getting another mammogram until I am 40!!!!! & no people, this is not coincidence this is God. They have been tracking these clusters for close to a year.

I think this video says it all. Now time to freak out. EEK!

It seems that I have slept my life away this week! Starting with the fluids and meds on Monday, things have just gone downhill from there.  On another note, when I went to my appointment with my hematologist, I had to get on the scale.  Yeah I think it was broken because there is no way I way that much! Okay.  So maybe I do weigh as much as it said! Which means I am the heaviest I have ever been in life and that has to end.  [Insert exercise here]--I wish it was this easy! So today, when my husband was on his way out the door to walk the dog, I came with. It was pure torture. He runs these blocks every morning but I only walk to my car. Shame I know.  This weight is definitely motivation to get moving because I do not want diabetes or any other problems that may come with being overweight. And now it's time for the oxymoron of this post, I made a fudge chocolate cake.  I am totally screwed when it comes to getting rid of these pounds.

This song says it all.

& Today I am going in to get fluids pumped into me and hopefully some medicine to help my achy body and spleen. I have patiently waited out the weekend so that I could do this without a trip to the ER. I also just went ahead and did my dirty work and scheduled my biopsy. BOOOOOOOOOOOOOO As you can tell. It is definitely Monday. That is all.

It dawned on me that many of you who are not close friends have no idea why I'd be in pain or learning to crochet ;) Well it's because I have Sickle C disease, a "mild" form of Sickle Cell Disease. I say mild because at the moment, I'm sure my pain could match someone with full blown sickle cell anemia. Take a look at some personal anecdotes from people with the disease as written for the New York Times. Pain, Persistence, Family - Sickle Cell Disease SCD is such a complex disease that it has been called invisible due to the pain that is internal and that varies from person to person. No one can readily see the affects of this disease and have no idea how to relate to you while having a pain crisis. Why is there pain? Because individuals with Sickle Cell Anemia, Sickle C Disease and Sickle B disease have abnormally shaped hemoglobin, or blood, which can often get stuck in the veins which can cause pain in several different areas of the body. Blood cells can also...

Another weekend has begun that has slowly crept under the radar. While everyone is planning barbecues, hikes and get togethers, I, friends, am in bed. No, not the ultimate luxury weekend full of slumber. Yet, another crisis weekend. What does it feel like? Like I was beat down and my whole body aches. Ouch. And this has been going on for a few days. So to keep myself amused and from the sneaky side effect of illness called depression, I shuffle through a few things. My newest hobby, wait for it.... crocheting. Unfortunately, my works of art look nothing like this. In fact, although I am very embarrassed to do so, I will show you my lumps of yarn. But considering how long this pain will last, I'm guessing my lumps will start to look more and more like they should....and along the way I will figure out what exactly it is I am making. I also spend plenty of time on my kindle. Currently I am ready the Westmoreland series by Brenda Jackson. I always love a good romance book. I beli...

I am always wondering what life would be like if I was someone different. And yet, I feel that I probably would want to be me again. There are certain things that I have to deal with on an everyday basis that I know very few others can even understand or want to know. Which is why I have resulted to the infamous blog. So I can scream and whine and not a soul can say anything to me...especially if i disable comments.