So I have had a really tough past few days. I am still on Prednisone, and although I am on a tapering dose (have recently tapered down to 10mg), I am still suffering from very bad adverse affects from the medication. I have been experiencing extremely painful heartburn that will happen so quickly. I am talking it will go from not being there at all to being super painful in about five seconds. In addition to heartburn, increased heart rate and bp and anxiety have been occuring quite frequently. Usually this is resolved by taking Xanax. And the worst side effect of all: WEIGHT GAIN!!!!! I have gained 20lbs in the past couple weeks since being discharged from the hospital. I am embarassed to report that this brings my total weight gain from steroids to 100lbs. I cannot believe it. It literally feels as though someone took another person and glued it on me. When you are on steroids, the weight gain is strange. The fat redistributes itself on your body...the most common places include abdomen, arms, neck, underarms, and face. The "moon face" is the worst. My face is so swollen that I can feel how puffy my cheeks are and I can see my cheeks from my eyes just by looking straight, not even looking down. Looking down I can see them for sure...If this makes sense.
I know it may sound superficial to focus on my external appearance, but it is so difficult to look like someone that is not me. I no longer recognize myself. When I walk by a mirror, I either look away immediately or my mind is suddenly flooded with negative self talk....Thoughts like "I am so fat, disgusting, ugly, I don't look right, I look like a hippo, I am so gross..." run through my brain. Since our thoughts are closely linked to our emotions (and subsequently, our behaviors), I then become angry, depressed, frustrated, and sometimes start to cry. I literally have no idea who is looking back at me in the mirror. I cannot express how that feels. When I had my normal body, I had a six pack flat stomach, I was thin and in shape, I was tan, and I felt pretty. I wasn't the hottest girl in the world, but I was happy with how I looked and I was confident with myself. Society places such great importance on our looks, even though some people like to think this is not true. I don't necessarily care how others view me but I am more concerned with how I think and feel about myself. And right now, I don't feel very good about myself.
So needless to say, the last few days have been so hard trying to cope with the significant weight loss and its subsequent affect on my self esteem. Not to mention that it feels so uncomfortable that it makes it difficult to breathe. I have been taking a dieuretic for the past week and finally it has paid off. I just lost 3 lbs. And I have been drinking a ton of water, despite how badly it hurts my mouth and throat, to try to flush out the excess water weight and toxins. I feel a little better, so that is good.
Today I went to my pain management doctor to get refills of my pain medications. That is an hour trip to Chicago each way. I did not feel well at all. My mom always drives me to these appointments, thank God, because it's too much for me when I am so sick. The mouth sores are increasing in size and number, so that was causing a great deal of pain. In addition to that I had a migraine and my right calf was hurting. That was worrying me because two years ago I had a blood clot in my left lower leg, in the calf area. That prompted me to start Cumadin and when I had a bone marrow biopsy done by a hematologist, they determined that I test positive for Factor V Liden....meaning that I am genetically predisposed to blood clots and have to remain on Cumadin forever. The pain in my right leg was not exactly the same as when I had the clot in the left leg, and there was no swelling. Yet I was still very concerned. Also I was having pain on the left side of the very lower area of my ribs. I was very fatigued and felt just a general malaise, as I often do. So not fun to travel when you are dealing with all this.
When I went to my primary care physician this afternoon he attributed my calf pain to tendonitis (which I already have in like four areas of my body) and muscle pain. Thank goodness. And my rib pain is costochondritis, which I have often as well. I have some stretches to do for my calf and he suggested putting heat on it.
I want to report some really good news! Since I have been writing this blog, I have been connecting with others who are suffering from Behcet's Disease. I never imagined that I would meet others that know exactly what I am going through....but it has happened! :) I have been talking to a few people, one girl pretty regularly. I posted her story the other day, her name is Kristi. Her and I have so much in common in terms of what we have experienced in our journey. It has been so amazing to have someone to talk to who understands and can validate what I am going through. It is very therapeutic to have her to talk to. I also have been talking with her mother, Sherry. Sherry and I have spoken twice on the phone and she is absolutely amazing. She is so incredibly sweet and caring and it's been so helpful to hear her perspective. She cares so much about her daughter Kristi and it helps me realize what my mom has been going through hearing Sherry talk about her hurt while having to watch Kristi go through all of this. I also had my mom and Sherry talk and I feel that they can build a bond and support one another because as much as no one understands what Kristi and I (and others with Behcet's) are going through, it is also difficult for people to comprehend exactly what our mothers are going through.
So despite the difficulties that the past few days have brought, I feel blessed and lucky to have these new people in my life. I told my mom tonight that I felt as though we were living in a bubble before because we had no one to talk to who was also dealing with this disease. Now I feel like we have popped that bubble and are moving forward by creating relationships with these wonderful people. I know that God has put us in contact for a reason, and I am so thankful. Thank you to Kristi and Sherry for your support. I appreciate it. And I am always thinking about you! I hope that I continue to find individuals with this disease.....not that I want anyone to have it, but I want to be able to connect with more and more people so we can support one another! Gonna try and get a good night's sleep....Take good care, all!
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