Fiercely Independent Pam

Tag: Don’t Let the Hard Days Win!

  • Six Years Ago: My Adventure with Blood Clots Begins.

    I’ve said it before- I have a love/hate relationship with Facebook Memories. Today, it reminded me that six years ago, I was fighting a giant uphill medical mountain. Besides doing a round a plasmapheresis(at the time they believed I had MG- Myasthenia Gravis). It turned out the multiple blood clots were found in my lungs (PE’s).

    The nurse and doctor worked quickly with a heparin drip. Then the reality of things came into focus. I would be at risk for additional clots for the rest of my life and would need to take a blood thinner forever too. I was placed on Eliquis, which requires less work than Warfarin.

    It was a scary diagnosis and I couldn’t do anything but follow the doctor’s orders. I knew having blood clots, especially in my lungs, was bad, but I just wanted to know what then soultion was going to be. Sometimes it amazes me to think about what I have gone through and that I am still hopeful and open to the next medical adventure.

    The good news is that despite going through three rounds of plasmapheresis, doctors were able to dismiss the MG diagnosis and needed to look for other answers. I had a muscle biopsy to confirm that it was not MG. This didn’t help the blood clots, but was still very good news.

    The bad news was a couple weeks later, I developed other clots, this time it was a DVT in my right arm. Since I developed a clot while taking Eliquis, the doctors considered that a failure and placed me on Warfarin and with all the monitoring it required.

    I was happy to find out at least that I could do my own monitoring of my INR for being on Warfarin. I was given a little machine similar to a blood sugar machine that uses a sample of blood. I do this once a week and then the clinic calls me back and gives me instructions for taking the Warfarin for the week. This is a big difference than when my father was on Warfarin and had to go to the clinic every week for a blood draw. So far, (knock on wood) the Warfarin has done its job to prevent future clots.

    Memories give us strength. They remind us what we have been through. For some people finding out they had multiple clots in their lungs might of put them over the edge, but not me- I challenge myself to keep going and not let anything stop me!

  • The Name of the Game is to Stand at Many Different Heights and Gain Some Strength Too!

    Today was my last therapy session for the week. I worked with the OT assistant, who is wonderful. She and I figured out the best thing to do is stand up several times with one of them consisting of walking to the scale and getting a measurement.

    Each time I went to stand, I lowered my lift chair to make it harder. We have a goal of getting it lower than the toilet so that is not a problem either. Eventually it needs to be pretty low so I can get in and out of cars.

    My goal is to be using my Zeen at least part time by then end of next week. I know if I start using it, my legs will get stronger making my efforts to stand so much easier. It is just a matter of standing long enough to get in the Zeen.

    This weekend will once again focus on whatever I can do to help my legs and arms get stronger to make my efforts to stand easier. I know these extra exercises are making a difference. I will continue to complete the various exercises, especially any that involve lifting my botom

    I really want to be able to not only use the Zeen, but also start using the toilet again. That would be a huge movement towards independence. I don’t even want to try the toilet until I know I can be successful and because it is so hard to stand off the toilet and so embarrassing if I can’t.

  • Working Hard, Focus on the Goals of Independence and Success!

    I am a big believer that goals are only as good as who you share them with.I spent a great PT session today standing and walking a little bit from my arm chair and gradually lowering the arm chair. I did this until I was exhausted. I felt good about being able to stand on my own. Its all a matter of focus on what needs to be done.

    Looking forward, I would like to try being on the Zeen next week or the toilet. I have to decide where I am going to focus. It would be huge to be able to actually use the toilet and be able to get up from it unassisted. At this point the unassisted is the most important part.

    I still have a OT session this week and hoping to work on some transfers (pivoting instead of using the transfer board.) Again, it’s a matter of focus and energy conservation to get this done. This will be most possible from my arm chair to wheelchair and bed to wheelchair.

    In other news, I managed to completely get ready on my own today. I managed to set my clothes out and other than that, I was able to do everything!I needed to focus and make it happen. I am finding my independence one way or another!

    I even had maintenance install my new toilet riser so it set up for when I am ready. I got them to do it while they were here changing light bulbs. I am setting myself up not only for independence but for success as well, all through focus.