As the time goes on...

As the time goes on, I continue to have procedures, try new medications, and participate in pelvic floor therapy (which has now totaled several years)  I have not made much progress, the insurance is not wanting to approve any more sessions.  I do participate in Myofascial release which is a type of massage technique used to break up the scar tissue in the fascia. This is in hopes of helping my Cerebral Spinal Fluid to continue to flow without obstruction throughout my spine and to my brain. I have monthly membership at a local massage place.  Not many masseuse are trained in this technique, I am very lucky I have found one close to my home.  I continue to be wheelchair bound when going outside of the home shopping etc.  The spasms from the Pudendal nerve and injury to my spine is much to great to withstand walking/standing for longer than just a couple minutes.  My Dr has ordered an electric scooter for me, although I have not yet received it. 

I was recently able to take a trip to Rocky Point Mexico.  Do not let pictures deceive you.  I struggled...   I did well the first and second day.  My goal was to get to the beach.  Our condo was on the beach, although it was too far for me to walk, so my husband drove me down there to the pool/beach area.  I was able to get a arm/shoulder/neck massage on the beach.  I ended up with hives on my neck from the massage, those that know me well know just how sensitive my skin is.  It could have been the essential oil she used, or the sun, or a combination of the two.  I was then forced to take Benadryl to control the spreading rash the next couple days.  One thing about my illness is the constant rashes, I have become "used to it".  The methotrexate has helped slow them down a bit, but those that know me, know I can break out in a heartbeat to just about anything that touches my skin.  The sun is not my friend, and I should not be in the sun. according to the warning on the medication packet.  So I try hard to stay in the shade, but enjoy these types of outings by protecting myself the best I can with shade, sunscreen, sunglasses, coverup, and even a hat.  The 3rd day of the trip I spent the whole 24 hours in bed, I did not get up once, not once, so when you say to me "I am glad you had a good time, or you look so good, etc, please know, there is so much more behind the scenes.  My husband was able to go off with our friends that 3rd day without feeling guilty, I have gotten to the point of communicating with him how much it means to me that he has fun and takes advantage of that time away. There is nothing he can do to help me by staying behind, all I did was sleep, I wanted him to have fun and not be confined to the condo just because I was.  I am happy he chose to go out and about and use that time for himself.  There is nothing anyone can do to help me when I am in that "state".  It happens often.  I wear myself thin for a day or two, and crash the next couple days.  Its a pattern that has become all to familiar.   Probably a great subject for another blog!

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