~ Dreading next week

      I have been in Physical Therapy for over a month now. It is a lot of hard work. I now have a 45min program I do at home with my hips / legs using straps, rods and hard foam squares. I am supposed to be doing the "home program" 2 times daily. I haven't been doing as I was told. I have only been doing it once a day except on Wednesdays, Saturdays and Sundays I do 2 times. When I mentioned this to the physical therapists they seems genuinely happy about my progress. It wasn't the reaction I was expecting. I was obviously slacking off. Instead of getting the firm words of warning I was looking for, to help get me back on track.... I received words of encouragement and a green light to continue doing the home program as I had been doing it the last three weeks. They went on to tell me they are very pleased with my progress and can tell I am working on my program at home because of the swelling and less shaking. I am unsure why having a swollen right ankle and swollen / hot to touch left hip are good but they seem to know what they are talking about.

     While I am at my sessions, so far, I am given much more time than my appointment slot. Anywhere from 1 and half to 2 half hours. My allotted time is 30 mins. I think. I couldn't afford to go for as long and as frequently as they originally wanted. So far, I haven't been charged extra nor has my insurance been billed for the excess. The majority of the time during sessions is spent in odd contraptions designed to "build up muscle" in my left hip. They keep saying "Before your assessment in October". They are referencing my appointment on the 6th. They have to hold me up during much of the exercises as I have no balance. It is embarrassing that I have to be held up by my hips and under my arms. I know they don't mind but.. I just feel so ashamed that I can't make my body do what I need and want it to do. When I asked if these stretches and contraptions would ever get easier or if I would ever get my balance back I was told quite plainly "no".  I always knew, in my heart that I would never get my balance back. That I would never walk normal again. Still, it hurt to hear it said out loud. Each time I ask "Why we have to do this" I am told same thing over and over "Get ready for your assessment in October". To "Build up as much muscle as we can in your left hip before your appointment". With the constant reference to my appointment on the 6th, I must admit I am rather anxious and nervous now. They are all very kind and gentle. I hope I didn't portray them otherwise. They all genuinely care for me as a person and it is clear they want to help. Their concern is very evident. I have the "Department Lead" working with me as well as his assistant. They took some sort of class recently and have me doing the oddest exercises with belts at home as well as in the session. All the while adding more and more as I get to where I can do each new one efficiently. I am now down to only 45 mins for all 28 modules of my daily at home program.  I am very discouraged as I don't have the balance needed to do it as efficiently as I would like. Also, it is uncomfortable having someone constantly holding my hips. My hips are so hot and tender these last few weeks. My left more so than the right. The right is one that tilts up and to the rear, into my ribs.  My left is the one being crushed by my torso and pelvis as my spinal deformities progress.

    I am unsure and frankly anxious as to what will happen during my appointment on the 6th. Will it be more images? More measurements? More or less medicines? Will we delve deeper in the Surgeons? I was given a LARGE list of things to do and people to see at our last meeting. I have done all that has been asked of me to the best of my ability. My balance is getting worse. My secondary compensatory curves are hurting quite a bit. My primary progressive thoracolumbar levoscoliosis doesn't "seem" to me to be getting worse, but I am told I am looking worse. I suppose it could be that I am just looking at myself daily and do not notice? I have no idea if there are even any "visual" signs to tell me if the lordosis is doing, but I am sure they will want to look into that. I am unsure if I have lost any more height as I have avoided measuring my height the last 2 months. The pain, with all my meds, is about 5-6 in the morning so that is still much better than my usual. Afternoon to evening transition is moderate at about 7-8 level. All of which are still better than my "normal". Sleeping however is ..tricky again. I am going down for 3-4hrs still. Only difference is that I am waking 10+ times per night again. It was hard at first, but I quickly slipped back into the sleeplessness. Funny how we can become accustomed to such things so easily.

     Inside I am anxious. Scared. I know I will face anything the best I can.... I just wish at times I was.. better, stronger. In my heart I wish there was something we could do to stop and slow down the progression.. but on the other hand I know what my only option left is. Gosh, I just do not think I can afford surgery.

     ...I am so glad it is nearly time to make chocolate baskets. Lights and cinnamon apple. Crisp mornings and slow cooked soups. Early morning wake-ups from cold and giggly noses and toes. Gosh, I love Fall & Winter.  Thank goodness I can enjoy these things during such an uncertain time in my life.

*warm hugg*
       dani

   Today was my last day in Physical Therapy. I have been released as having "achieved the outline" that was laid out by my spine specialists. I think I only need "check-ups" to make sure I am on track sporadically. Everything that I am currently doing.. IE My new "daily" exercise program. Is right on target and they are now a part of my everyday life.

     He said there were a number of problems that he is going to high light in his report. My balance, of course. My walking, I already knew that. So did the specialists. He has to report about the increase in my primary curve and the progression of my compensatory curves, again I knew that. The constant swelling in my left hip is showing that the joint is no longer able to function properly. We just weren't able to achieve anything with my left hip. It doesnt have much space due to the deformity. What he told me next was a .. concerning. He and the specialists had eluded to it before though last month.

     I have what they are calling "Neurologic" symptoms. "Distress symptoms". These little sections of my spine.. I would say little 2 inch radius circles around my lower lumbar spine "quiver" all the time. Right up next to the spine itself. It is really quite annoying. With every part of my back and hips on fire and burning at the end of the day, I just never thought much of it. The deep "Itching" is apparently a "neurologic" symptom as well. As are the "Ice" sensations near my groin and upper thighs. Numbness is increasing in area sizes and duration (2 days most often) down both legs. He seems the most concerned over the "quivers" along my lower spine. He said he was going to stop by and talk with them about it today.

     I really hope that the spine specialist are satisfied with my progress tomorrow. I hit the ground running and worked hard to achieve everything that has been asked of me. So, we will see what happens.

*warm hugg*
        dani

    I had my appointment with spine specialist on Wednesday. We went over my physical therapy. She wanted to see me walk. She is pleased with progress on my walk. It is only moderately painful to walk now. It is more than she expected. She was pleased with my progress but still concerned that I cannot walk without pain and limp/rotation up of my right hip. Wanted to see me try to balance my weight on the heels of my feet, then on my balls / toes. Both times I stumbled, fell and couldn't do it. My balance is a problem that will not get better no matter what I do. It will get worse as my spinal deformity progresses.

     She said she was extremely pleased with the physical therapy and my new life changes. I did tell her the same that I told both physical therapists. That I have tried hard to do twice a day but in the end I seem to only be able to manage once a day except on Wednesdays, Saturdays and Sundays when I can do 2 times a day. Again, I was told the same exact thing word for word that the physical therapists told me. "We say twice a day in the hopes you will at least do it once a day at home. You have exceeded our expectations. You are proof of what physical therapy can do when it is done correctly. We are all very pleased with your progress and please continue doing exactly as you have been." She did go in to what "usually" happens when patients are sent to physical therapy. It was like she had memorized what the two physical therapists had said word for word. They send patients down and the only time the do their "modules" is when they are in the physical therapy center. I find that highly unlikely Who would waste time and precious resources to turn around and not do what they are supposed to do?

     She and the Team Lead are concerned about "neurologic" symptoms. Concerned about my balance and visual signs that I am progressing despite my best efforts (trust me I am working really hard to do everything I have been asked to do). The endocrinologist has cleared me. The physical therapist has cleared me. All the other specialists have sent "great reports regarding your progress.".

    I can "enjoy your holiday with your babies." "You've earned it. Spoil your angels." and that "we will pick things up and begin images and consult in January." "I have to say it, you are my star patient. I wish I had more like you. You are proof.". I couldn’t even look her in the eye at that point. I was sure I was beet red!

     So, I am stable enough to seek surgical help. I am a candidate now. I am also "stable" enough to have a holiday with my family "unless something happens or your have a pain spike please do not wait. Call me. Don't Dont wait. We will take care of anything that comes up."  I do have to continue my medications at the same rate. I knew that. I do have high pain spikes still, like today. I have been on the verge of vomiting all day. I hate that I am still stuck with the pain & muscle relaxer combos. The.. "fogginess" wears me down sometimes, but I just do not want to go any higher unless I have no choice. So, for now, I will tuff it out.

    In January we will x ray the length of my spine. Measure the cobb angle of my primary progressive thoracolumbar levoscoliosis. My secondary thoracic Dextroscoliosis. See how much my compensatory tilt has progressed / check on the degeneration in my cervical area. I am not sure what to expect at that time. I know there is damage to my spinal cord and narrowing of space and discs space as well as permanent damage to many of the vertebra. It It is all "normal damage" for people who have a progressive spinal deformity. Also, no more "testing". After two full years of blood work and genetic testing I am "Adult Onset Idiopathic"... which is fancy talk for "we don't know". But, on a much brighter note, the statement "we don't know" only cost $450.00 for the last and final genetic test. Not $4,500. With a little luck and a lot of prayer hopefully I will be in a position to financially afford to consult a orthapedic surgeon / can make it until then before anything major happens. 

    Something else happened that was very unexpected. The nurses all admire the jewelry I make for the girls (I've never worn my own jewelry as I have metal allergy). Last time I went in the girls were wearing their "Birthday Watches" and I was asked to bring in some adult jewelry. So, this time I brought an adult set made from Jasper and Swarovski Crystals. The ladies were ecstatic and praised my work. Gosh it felt so good! Later when I came home I was so sleepy! It was like someone bonked me over the head with a sleeping stick. I went to go lay down. When I woke up David told me that the nurses called and wanted me to stop by with some adult jewelry sets that are for sale. Can you believe it? I of course said yes! Then today another one called and wanted to know if I had anything in the 25 dollar range. She didn’t even SEE my work! I said of course can we see all of your together? So, it looks like next week I have some jewelry sales.  

     I see my propensity to write a large novel hasn't changed, so I will end this hear. Thank you all for being there for me. It means a lot to me.

*hugg*
  dani