Hi all my faithful readers and new friends! I hope today finds you well. I am trying to soak up every last bit of sun before it is gone. I love this weather!!! High 60's to low 70's, the brightest/bluest sky imaginable, bright white puffy clouds...ahhhh. Not too hot, not too cold, and the perfect dose of natural vitamin D.
I wanted to report on the port for those of you considering getting one. Mine has healed up nicely. The treatments are now about an hour shorter because the meds run smooth and steady and there is only one poke. It is perfect and I love it. I always thought ports went out of the skin but I was wrong, it is completely under the skin so no maintenence on my end either...sweet!!!
In other news, I have a confession to make. I cannot sew! I know, what kind of mother am I? I have, however had a sewing machine in my possesion for the last 3 years, it is the old Kenmore type that is built into a table, so I have been using it as a table and the dust on the machine is crazy! But, my IVIG nurse said, hey we are together for 6 hours anyway, want to learn to sew...would I? Yeay!!! I now have a new hobby, and homework:)
That is about it for an update, I hope you all find yourselves well and happy and strong!
Jen
Showing posts with label port. Show all posts
Showing posts with label port. Show all posts
Wednesday, October 6, 2010
Thursday, September 16, 2010
Med changes, job changes, surgery, oh my...
So you were probably all thinking...hmm, Jen has been quiet, she must be feeling great! Well, I was, and then bam, I found out that I was losing my job. The job that I have loved for 3 years, in the field I have specialized in for over 13 years. As you can imagine my stress level went through the roof and my MG did not react well at all. Things will be okay and everything happens for a reason so I will not go into detail here other than to say I am at peace with it and I am reassessing what this means for the future. And on to med changes...
I saw my neuro in late August and he said that I am really not improving at a rate that he would like to see. That was actually good news for me because it means there is hope for more days without symptoms. My average day lately has me with double vision about 50 percent of the time, needing the walker for at least a few hours, and periods of swallowing and speech difficulty. I have also had fatigue greater than I can put to words and pain in my back and neck that does not easily relieve itself. I stretch, I walk, I do deep breathing, I take meds, I am still in pain.
So for the med changes, I am now on double the dose of IVIG every week. Instead of a 4 hour treatment (which I loved because it flew by) I now have a 6 hour treatment every week. Also, my veins just can't take the constant IV's so on Monday I had surgery to have a port placed. The surgery went well but the anesthesia caused a pretty severe MG flare for the next couple of days. Today I feel like I am back to my "normal" weakness level so that is a good thing. My doctor also upped my Cyclosporine dose back to 100mg a day and the stomach issues are back with a vengence..yuck! He said if that continues then we will switch to a different long term immunosuppressant or try Rituximab.
Say some prayers for my poor battered skin. It turns out the more you are exposed to chemicals the greater the chance for an allergic reaction. I am allergic to tape, tegaderm, opsite, and band aids. My skin actually blistered and tore off with the tape removal and I look like a burn victim in spots...not fun on top of everything else.
Other than that, and I know it is alot, I am hanging in there, keeping my spirits up. The family is doing great. School is in full swing so we have been busy with homework and what not. I hope all of my readers are well and enjoying the fresh fall air.
I saw my neuro in late August and he said that I am really not improving at a rate that he would like to see. That was actually good news for me because it means there is hope for more days without symptoms. My average day lately has me with double vision about 50 percent of the time, needing the walker for at least a few hours, and periods of swallowing and speech difficulty. I have also had fatigue greater than I can put to words and pain in my back and neck that does not easily relieve itself. I stretch, I walk, I do deep breathing, I take meds, I am still in pain.
So for the med changes, I am now on double the dose of IVIG every week. Instead of a 4 hour treatment (which I loved because it flew by) I now have a 6 hour treatment every week. Also, my veins just can't take the constant IV's so on Monday I had surgery to have a port placed. The surgery went well but the anesthesia caused a pretty severe MG flare for the next couple of days. Today I feel like I am back to my "normal" weakness level so that is a good thing. My doctor also upped my Cyclosporine dose back to 100mg a day and the stomach issues are back with a vengence..yuck! He said if that continues then we will switch to a different long term immunosuppressant or try Rituximab.
Say some prayers for my poor battered skin. It turns out the more you are exposed to chemicals the greater the chance for an allergic reaction. I am allergic to tape, tegaderm, opsite, and band aids. My skin actually blistered and tore off with the tape removal and I look like a burn victim in spots...not fun on top of everything else.
Other than that, and I know it is alot, I am hanging in there, keeping my spirits up. The family is doing great. School is in full swing so we have been busy with homework and what not. I hope all of my readers are well and enjoying the fresh fall air.
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