Saturday, May 7, 2011

How Am I?

That seems to be a common question. For most of my life I believed that it was just a coined phrase and that no one really wanted to know. Everyone always answers "fine".  If you don't really want to know, stop reading here - the next paragraph will answer how I am . I guess I am in one of those moods to let it all out.

5 weeks ago my glomerular filtration rate was 43. Last week it was 34. That puts me 4 points away from stage 4. I had more labs drawn Thursday that I don't have results on yet, and I am currently doing a 24 hour urine collection for creatinine and protein.

My heart rate is running high 90s - low 100s at rest. In the past Dr. Haddadin has said that is too fast. I don't know what he will decide to do - he may insist I try a new medication. I feel better overall on what I am taking, but will defer to him to decide what is best in 2 more weeks.

How do I feel? - I get sharp pains in my head that only last for a minute or so. I get severe muscle cramps all over my body but they are less frequent than when I was taking Multaq. At times I shake all over. When I stand up I sometimes get very unsteady, and sometimes everything goes black. Walking to the bathroom makes my heart race. My body is so tired but my brain won't shut off to let me sleep. At times I am very nauseated. My nose swells shut at times. I itch all over. I get rashes. My eyes water constantly. My feet look like balloons - so does my face, and I have a Buddha belly from the prednisone.

As for anaphylaxis, the last one was Wednesday night around midnight. I did ok after using my Epipen, extra Benadryl and prednisone.

My internal medicine doctor signed paperwork for me to get a handicap parking placard. Now if on the rare occasion that I decide I want to go in a store or restaurant I won't have to be hauled so far across parking lots in a wheelchair. It will make it much easier for who ever is driving me. Kristen is the best wheelchair motor so far. She is so patient. It is very rare that I leave the house anyway because I am so afraid of getting exposed to something and going into anaphylaxis in a public place. It is bad enough at home, but it really freaks people out when they don't understand what is happening.

Scott is having a really hard time with his back. He was unable to make it to work 2 days last week.

I miss being independent. I miss going to work. I miss my friends. I really hate that I can no longer go jump in the car and take off for where ever I want to go. As much as I hated housework, I would love to be able to just mop the floor or clean the bathroom.

So - what do I do to keep from going insane? Not much at the moment - watching TV mainly. Facebook. Ravelry. Dreaming of my grandson. Petting my dog. Watching birds and squirrels outside my house. Knitting a little bit. I try to sit outside a little bit each day but I get really congested. It is amazing that I can get congested  with the amount of medications I take, but they seem to make no difference to my seasonal allergies.

Now please don't think that I don't know that I am very fortunate. There are so many people who are in much worse situations -- people who are so much sicker. I have a great family to take care of me and some people have no one. I am blessed.

Next week I am going to go to stay with Casey for a couple of days. It will be nice to get to spend time with her and  JW. "We" are going to decorate the baby's room - that means Casey and  JW are and I am going to watch. Casey has promised me a special dinner of stuffed peppers. Yum!

Tomorrow my little brother is cooking lunch for all of us. I am looking forward to having some of his ham. He is an excellent cook.

Happy Mother's Day to all.

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