Tolerable 2008

Posted Jan 5, 2009 11:00pm

I guess I should start by saying I am sorry I have not updated my page in a few days! I have been so busy, tired and trying to re-adjust to home life that I have not felt like typing (or thinking for that matter). My best friend Rachel, from college, came up to visit on Thursday and she is still here, and let me tell you she has been a Godsend. She has taken me to two doctor appointments and carted me around town to run errands since she has been here. It is nice to know there is someone that can take you places and I don't have to worry about them missing work or school or something else important. On top of that she has helped me with laundry, cleaning etc. I hate she has to leave tomorrow, I have so enjoyed having her around. I guess I will just give everyone the rundown of what I have been doing since I have been home from my home away from home, the North Tower of North Carolina Wake Forest Baptist Hospital.

On Friday I had my first appointment with the heart clinic. They have a program where they have you come in once or twice a week and have your blood (INR) checked to make sure your coumadin is doing its job. I never knew about this clinic until now. It is a relief to be able to get immediate results. Before I had to have lab work drawn and then wait a few days to hear back about changes in meds or whatnot. This gives results in 20 seconds, like checking blood sugar, and she makes changes right there based on what my INR is. It has made me more comfortable because to be honest sometimes I feel like a walking time bomb. I am afraid some days that I will throw a clot and drop dead if my meds have not been regulated right, but this clinic has helped to alleviate some of that anxiety. I know that sounds bad that I think like that sometimes, but I think it is normal, especially when you have a clotting disorder. I have my days where I seem to dwell on being sick more than others. Those are the hard days, and the days I wish I had someone that could be here with me the whole day. For those of you that are interested I am getting adjusted the the correct INR level. On Friday I was at 3.2 and they want me between 2.5-3. When I went today I was at 2.06. I swing from low to high very quickly, so hopefully when I go back on Monday I will be perfect. When I was in the hospital (and a few times at home) I went from 2 to 6.5 overnight and started having severe nosebleeds and started peeing blood. So, like I said it is nice to have such tight control over it now.

My high dose of prednisone has also kicked in, and my face and shoulders are so tight I can barely move. I definitely have a "moon face". When I start to swell like this I hate to go out in public. I feel so bad about myself and the way I look, even though I know I cannot help it. I am slowly being weened down to a low dose, but it cannot come quick enough for me. All I want to do is eat sweets, the one thing I don't need of course. The plan is to keep me on 5-10mg until I finish chemo. The doctors said it should not only help with my brain lesions but with the side effects of chemo as well.

I also look like I have been beaten from all of my bruises and holes from my permacath and PICC line. My foot is extremely swollen and bruised from an IV there, I can hardly wear anything on them. My whole foot is purple. Hopefully I will heal up soon. I got to stop my Lovenox shots on Friday, so my belly is starting to heal a bit. I forget how sore and bruised it is and bump into counters and such. I remember when that happens. OUCH. Just a little side note here, for those of you that don't know what a PICC line is, it is essentially an IV that is put in under ultrasound, but it goes in your upper arm (or mine always has) and it has two lines coming out. This allows one line for IV hookup and one line for drawing blood. It is the greatest thing ever for those of us that have no veins. My only complaint is they refuse to insert them soon enough. They had to do an IV under ultrasound the first day I was there, why not go ahead and do the PICC? We all knew I would be back for one, and sure enough after I was stuck for the 12th time for an IV they decided I needed a PICC line. Well no crap. I told them that from the first stick. It makes me so mad when I am not listened to about that. I mean the phlebotomy people know my name and argue over who has to stick me. Give me a break. Sorry, it just makes me mad I have to go through all of that to get what I told them I needed from the first second I was there.

Anyways, Saturday night Cheston threw a party for my birthday, and we had a great time. It was so nice to be around my friends again. Even better that they all came to my house to hang out. It was a great birthday. I got lots of wonderful cards and gifts, and the best company I could ask for.

Sunday I had a bad day. I woke up to a very sore throat and stopped up nose and head. My feet felt like they were on fire on the bottom and still feel that way. I think it may be a side effect of something I am on. I went to bed at 2 Sat. night and woke at 8, then slept from 9-11, laid in bed and watched a movie and went back to sleep at 3-10 that night. I ate something and went back to bed at 12 and slept until 10 this morning. I think I have been doing too much since I have gotten out of the hospital. I am on my way to bed once again after this. I have a few more doctors appointments this week, and I will try to update everyone as I go. I feel somewhat better today, but I just feel weak and tired as well as achy all over. I think most of it is the prednisone, but I am sure my body is just overly exhausted too.

For the most part my homecoming was great, but I did come home to Dakota having a rip roaring ear infection and a backed up sink in the kitchen. Rachel and I took Kota to the vet today and got his ears checked out and got antibiotic drops, so hopefully he will feel better soon. In the process of taking him Ollie got out and ran off. We had to chase her down in the car. Luckily she just went around the block and was waiting in the front yard when we got back around the block. The plumber came and fixed the sink on Friday and then had to come back today because it backed up again. So, over all I am enjoying being home, but it is hard to adjust to being back here. Every single day is a new challenge for me. I never thought I would be dealing with a chronic illness at my age. It makes me wonder what the future has in store for me sometimes. I know I am blessed and ever so thankful that what I have isn't something more terrible than what I have, but there are days and moments that I have my "pity party" for myself. Though I am trying very hard to hold my head up and deal with it. I keep getting asked how I do it, how do I make it through whatever I happen to be going through at the time. Well, the answer is I don't have much of a choice. I deal with it or or I don't. I choose to deal with it. I also get asked how I am doing a lot. Sometimes I don't know how to answer that, but my dad and I were talking about it and I think the best answer is tolerable. I am not at my worst or my best. I am just tolerating what I can every moment and praying all I can that tolerable will turn into okay soon enough.

Thanks again for those of you that read this and keep up with me and pray for me and think about me. It is all appreciated. Remember if anyone has read a good book recently please let me know! Reading is the only thing I really truly enjoy doing when my eyesight is good enough!
Thanks and much love,
Kinsley