Well I am officially done with my second round of PT of the year. I am "sort of" better than I was :-/ At least the shoulder joint is OK, and no surgery is needed. The bad part is there is still a lot of pain and instability. For example, Monday it was 90 degrees. Then yesterday is was down to 50 degrees - a difference of 40 degrees in 3 days. My shoulders were really upset about this! Both shoulders were popping, subluxing, spasming, etc. I got a nasty migraine too.
I'd told the PT people that I only have 20 "physical medicine" visits per year. I've already used over half. So I was able to cancel one appt. and I have about 8 left I think? Something in that range. I wanted to leave some in CASE (knock on wood) I hurt myself, need surgery, have ongoing issues that need more help or who knows what. I am still doing the exercises for my hips and now my NEW!! and improved shoulder exercises.
My stomach is still not "great" so I'm debating what to do about that. I think it has more to do with my migraines than anything physically wrong with my stomach. My stomach usually cramps up before or after I have a headache. Soooo I don't think there is much a doctor can do about that. Since they can't stop the migraines, the stomach cramps won't stop either. It seems to also occur more often with rainy weather. I'm afraid if I went to a new GI doc and said I have stomach cramps during rainy weather, and I can't eat X, Y and Z, he or she would pretty much laugh me out of their office.
I'd like to get back to acupuncture. Maybe that would help my stomach. However I need to pay off some of these bills first. We just paid off my son's braces. Now we have his marching band fees as well as all the co-pays from all my PT and my MRI! Blah!
Friday, May 24, 2013
Thursday, April 11, 2013
More shoulder PT - but better!
From reading my latest posts you may think I am a grouchy angry person, but in reality I'm just frustrated :-( I get tired of living in pain, and no one seeming to be able to help! That does make one a bit grouchy. So I went back to my orthopedic surgeon who operated on my shoulder back in 2009. . .he sort of shrugged me off like I was making a big deal over nothing. But, he did do a few x-rays, and then said I could have a cortisone shot (boo), more PT (boo) or have an MRI and see what was going on in there. I chose the last option because I'd already done the first two multiple times in the past, with very little results. So I fought back my nervousness and fear, and had my MRI. Then I fought back more anxiety to go back and hear the doctor say the results. Yes after all my bad experiences with doctors I have started to have panicky reactions in doctor offices.
This time the doctor once again shrugged me off, saying there was nothing wrong with the joint! I guess that's good, as I didn't want surgery. But I didn't like how he was sort of saying my problem was no big deal. He suggested I try PT again as he thought the issue was coming from the back of my shoulder and it was not an area we had necessarily worked on before. So I sadly agreed and he made some condescending remark along the lines of, "Cheer up! It just might work." :-/
So I went in yesterday but for some reason felt strangely calm? I was in severe pain that day and decided to wear my TENS unit so they could see what I am dealing with. They could see I'm not making this up. The PT was amazingly smart and knowledgeable about joint hypermobility!!! I was shocked. I told her I'd been there multiple times for PT in the past for both my shoulders and neck, and when I did the amount of stretches they wanted it made me MORE bendy and made me feel worse. But, if I didn't do any stretches my muscles would cramp and lock up. She said, "Yes it's a catch 22 isn't it?" She said I was very knowledgeable and educated about my hypermobility issues. She felt the main problem was instability in the neck, and muscles not holding my shoulder blades flat. She taped my shoulder blades and I immediately started feeling better. She demonstrated how when she held my shoulders back into place, I could raise my arms much better. My arms are NOT weak, because I do my exercises faithfully every morning! It's just the muscles in the back that hold the shoulders in place.
Overall I was shocked and amazed that this PT took the time to care, and figure out the problem instead of jumping me through the regular hoops like all the other PTs have done. She said, "There's no sense making you do the same things before that haven't worked." I was like, "What??! Can you say that again?!" She even told me to quit doing the neck stretches they had given me earlier, because it was just making my neck more bendy. She was even concerned about neurological issues with my neck. This lady gets 5 stars!!!
This time the doctor once again shrugged me off, saying there was nothing wrong with the joint! I guess that's good, as I didn't want surgery. But I didn't like how he was sort of saying my problem was no big deal. He suggested I try PT again as he thought the issue was coming from the back of my shoulder and it was not an area we had necessarily worked on before. So I sadly agreed and he made some condescending remark along the lines of, "Cheer up! It just might work." :-/
So I went in yesterday but for some reason felt strangely calm? I was in severe pain that day and decided to wear my TENS unit so they could see what I am dealing with. They could see I'm not making this up. The PT was amazingly smart and knowledgeable about joint hypermobility!!! I was shocked. I told her I'd been there multiple times for PT in the past for both my shoulders and neck, and when I did the amount of stretches they wanted it made me MORE bendy and made me feel worse. But, if I didn't do any stretches my muscles would cramp and lock up. She said, "Yes it's a catch 22 isn't it?" She said I was very knowledgeable and educated about my hypermobility issues. She felt the main problem was instability in the neck, and muscles not holding my shoulder blades flat. She taped my shoulder blades and I immediately started feeling better. She demonstrated how when she held my shoulders back into place, I could raise my arms much better. My arms are NOT weak, because I do my exercises faithfully every morning! It's just the muscles in the back that hold the shoulders in place.
Overall I was shocked and amazed that this PT took the time to care, and figure out the problem instead of jumping me through the regular hoops like all the other PTs have done. She said, "There's no sense making you do the same things before that haven't worked." I was like, "What??! Can you say that again?!" She even told me to quit doing the neck stretches they had given me earlier, because it was just making my neck more bendy. She was even concerned about neurological issues with my neck. This lady gets 5 stars!!!
Wednesday, March 13, 2013
More shoulder craziness
So my hips are doing a lot better! They do pop and lock up occasionally but no more numbness and tingling. However all the extra exercises have aggravated my shoulders :-( There are exercises where I pull on my hamstrings and some yoga-type poses which tend to irritate my shoulders. With EDS it seems to be a case of "Fix one thing, another one goes out." My right shoulder keeps sliding out of place and it is very painful. I suspect this happens when I sleep on it wrong. Also anything involving manual labor seems to make it extremely "ticked off."
The left shoulder seems to do it also but not as severely. It is getting so bad it is pulling some ribs out of place. I suppose (BIG SIGH) that I should call the shoulder doctor again but I'm not looking forward to it. More PT, an MRI and who knows what? The front of my collarbone has been popping and making odd squeaking noises. No joke. The back of the shoulder makes very loud popping and crunching sounds when I move it. This had started when I had surgery on it the first time and the doctor had assured me it was just the shoulder adjusting to its new position. But the sounds never went away - they got worse!!!
I've been trying to do my shoulder exercises as well but some days it is just too sore to even use the arm at all. Like yesterday - I worked one-handed most of the day. Some better pain medication would also be nice but the downside to that is if it feels good then I use it and feel worse later. What I need is a nice long vacation on a tropical island and someone to bring my healthy gluten-free food while I recuperate.
Wednesday, February 13, 2013
Emotional stages of food allergies
Yesterday was my birthday and I was hit square in the face with another one of those "situations" where I felt left out due to food. No one ever gets me food! I tend to get a little cranky about this on occasions. To be fair, one lady did buy me some fudge and I didn't have the heart to explain to her that I couldn't eat it due to the a.) sugar; b.) excess cocoa; c.) dairy; d.) possibly eggs or other things not listed. I just smiled and said, "Thank you," then felt horribly depressed. Most people around here get huge smorgasboards for their birthday. I got NOTHING... NO THING to eat. Apparently people are so confused and bewildered about what I could possibly have that they just give up and don't get me anything. This is curious to me - why don't they ask? I can eat many fruits and veggies. Small amounts of cheese. Plain potato chips and plain tortilla chips. Hummus. Guacamole. Nuts. DARK chocolate. They could even go to a health food store and buy some gluten free vegan cookies or chips but nope, I guess that is too much bother :-(
It sort of hurts my feelings because I am a very giving person and am always bringing food for others. One of our co-workers has cancer and I'm currently in the process of collecting two boxes of stuff to cheer her up in the hospital. But when it's my day nobody tries to help me. I wanted to throw a big pity-party for myself after all that! I did manage to make some gluten free vegan cupcakes and some coconut milk ice cream but I was too sad to really enjoy it. Hubby tried to cheer me up by saying, "Next year I'll try to make some for you." I think he could as it's really not any more difficult than making standard unhealthy cupcakes.
I think my problem is I'm the only one eating this way around here. In the Midwest there is not a lot of healthy food around. I noticed that when flying. The airports on the coasts had fresh fruit and many healthy and gluten free options. As soon as we got to Ohio, the "fresh" fruit was covered in some weird chemical preservative and there was nothing else for me. So I'm kind of the odd duck in this area. I think healthy eating is slowly catching on more but it's not as common as on the coasts. I am also the skinniest one because I don't eat much junk food. In fact I would like to gain some weight but how can I when no one ever brings me food??? I make all my food myself from scratch. The only prepared stuff I ever eat is gluten free Chex and the gluten free chips or snacks I buy for work.
This lady's blog sort of sums up how I feel http://cintism.com/?p=107
I do not feel sad or "deprived" anymore except during holidays and special occasions. I guess, like she says, it's because those events revolve around food and when you can't partake you tend to feel left out. So I've made progress overall but yesterday was just a dark spot for me.
It sort of hurts my feelings because I am a very giving person and am always bringing food for others. One of our co-workers has cancer and I'm currently in the process of collecting two boxes of stuff to cheer her up in the hospital. But when it's my day nobody tries to help me. I wanted to throw a big pity-party for myself after all that! I did manage to make some gluten free vegan cupcakes and some coconut milk ice cream but I was too sad to really enjoy it. Hubby tried to cheer me up by saying, "Next year I'll try to make some for you." I think he could as it's really not any more difficult than making standard unhealthy cupcakes.
I think my problem is I'm the only one eating this way around here. In the Midwest there is not a lot of healthy food around. I noticed that when flying. The airports on the coasts had fresh fruit and many healthy and gluten free options. As soon as we got to Ohio, the "fresh" fruit was covered in some weird chemical preservative and there was nothing else for me. So I'm kind of the odd duck in this area. I think healthy eating is slowly catching on more but it's not as common as on the coasts. I am also the skinniest one because I don't eat much junk food. In fact I would like to gain some weight but how can I when no one ever brings me food??? I make all my food myself from scratch. The only prepared stuff I ever eat is gluten free Chex and the gluten free chips or snacks I buy for work.
This lady's blog sort of sums up how I feel http://cintism.com/?p=107
I do not feel sad or "deprived" anymore except during holidays and special occasions. I guess, like she says, it's because those events revolve around food and when you can't partake you tend to feel left out. So I've made progress overall but yesterday was just a dark spot for me.
Thursday, January 17, 2013
Physical therapy report
Yesterday I was finally discharged from about a month's worth of physical therapy for my sciatica and hip pain. I am glad to say it is much improved. All that remains is a slight tightness in the tailbone area. . .the PT in charge of my care said that is what usually happens. I am to continue my exercises and hopefully work the rest of that tightness out. I doubt it will go away 100% - this is probably the best it will be due to the wobbly joints and instability.
The worst part of this whole PT experience was the traction machine. It consisted of laying on a table and being strapped down really tight while a machine pulled 50 lbs. of weight on my hips. It loosened my hips up quite a bit but the straps made me dizzy and then I developed rib pain so severe I couldn't use my arm or turn my body! Maybe a rib was popped out, I don't know. But I only let them do that twice. It helped a little but otherwise it was terrifying. Another odd thing was they had me walk on a treadmill BACKWARDS. I was imagining what they would say if I went to the fitness gym at work and did that.
Otherwise it was just straightforward exercises, many of which I had done in yoga class a couple years ago. I jokingly said, "Hey maybe I should just go back to yoga class," but the PT and I both agreed that my joints were way to wobbly for that. I can do some selected poses on my own, but other poses are definitely too dangerous or would aggravate things more.
A sidenote: I have never told this particular place about EDS because it is too stressful and I don't want to waste energy arguing with people who are not open to new info. I generally wait for the right time to bring that up and the assistant PT gave that to me. She kept commenting that my "joints are so hypermobile" and I am "too petite and don't have enough muscle to keep the joints in place." I was like yeah that is EDS all right, but I didn't say anything. She kept saying that and then asked if I'd had blood tests. Finally I got sick of her asking and digging and prying, so I asked her if she'd heard of Ehlers-Danlos Syndrome. She said "No, what's that?" and I said "Basically what you said, my joints don't stay in place."
Now the weird thing about it is she didn't ask how to spell it, or any more details. She said "Oh." and got really quiet. I thought if she really WANTED to learn she would ask more about it, or how to spell it but she got really silent and that was the end of it. I was thinking to myself "Yeah this is why I don't bring it up - they don't listen!" I suppose it would be better to have a brochure or book or something I could hand her, but I didn't and she didn't seem to want any more info. It was just odd. I got stressed out just from that little interaction because I felt she was not listening or not taking me seriously. In all honesty if they are treating my symptoms I'm satisfied with that and I don't care what name they call it. I know some day people will know what EDS is. My family doctor knows I have it. But I just don't have the time or energy to convince all these specialists and specialist's assistants and therapists etc.
P.S. Update from last posts: everyone around here has gotten the flu including some who got the flu shot! So my family is a little less weirded out by my Christmas illness. At least 20 people have died in my state. It's crazy.
The worst part of this whole PT experience was the traction machine. It consisted of laying on a table and being strapped down really tight while a machine pulled 50 lbs. of weight on my hips. It loosened my hips up quite a bit but the straps made me dizzy and then I developed rib pain so severe I couldn't use my arm or turn my body! Maybe a rib was popped out, I don't know. But I only let them do that twice. It helped a little but otherwise it was terrifying. Another odd thing was they had me walk on a treadmill BACKWARDS. I was imagining what they would say if I went to the fitness gym at work and did that.
Otherwise it was just straightforward exercises, many of which I had done in yoga class a couple years ago. I jokingly said, "Hey maybe I should just go back to yoga class," but the PT and I both agreed that my joints were way to wobbly for that. I can do some selected poses on my own, but other poses are definitely too dangerous or would aggravate things more.
A sidenote: I have never told this particular place about EDS because it is too stressful and I don't want to waste energy arguing with people who are not open to new info. I generally wait for the right time to bring that up and the assistant PT gave that to me. She kept commenting that my "joints are so hypermobile" and I am "too petite and don't have enough muscle to keep the joints in place." I was like yeah that is EDS all right, but I didn't say anything. She kept saying that and then asked if I'd had blood tests. Finally I got sick of her asking and digging and prying, so I asked her if she'd heard of Ehlers-Danlos Syndrome. She said "No, what's that?" and I said "Basically what you said, my joints don't stay in place."
Now the weird thing about it is she didn't ask how to spell it, or any more details. She said "Oh." and got really quiet. I thought if she really WANTED to learn she would ask more about it, or how to spell it but she got really silent and that was the end of it. I was thinking to myself "Yeah this is why I don't bring it up - they don't listen!" I suppose it would be better to have a brochure or book or something I could hand her, but I didn't and she didn't seem to want any more info. It was just odd. I got stressed out just from that little interaction because I felt she was not listening or not taking me seriously. In all honesty if they are treating my symptoms I'm satisfied with that and I don't care what name they call it. I know some day people will know what EDS is. My family doctor knows I have it. But I just don't have the time or energy to convince all these specialists and specialist's assistants and therapists etc.
P.S. Update from last posts: everyone around here has gotten the flu including some who got the flu shot! So my family is a little less weirded out by my Christmas illness. At least 20 people have died in my state. It's crazy.
Friday, January 4, 2013
My new juicer
I survived the holidays 2012. . .
Just barely. . .I came down with the flu/bronchitis/virus whatchamacallit that is going around my town. The night before Christmas Eve I started feeling really weird - coughing and short of breath. That night I came down with a 102 fever! The next morning when I tried to get up to feed my kitty cats, I nearly passed out. My heart was thumping in my chest a mile a minute and I broke out in a sweat. I had to sit on the floor to give my poor cats their food. Needless to say I didn't do much on Christmas Eve or Christmas Day. I missed the church service I was supposed to sing at but considering how awful I felt, I really didn't care. We were going to eat at my grandma's on Christmas Day but my fever was still nearly 100, so we didn't go.
I had to drag myself into work on Dec. 26 because my workplace has a weird attendance policy. I was very weak and still not feeling right, but most of the fever had left. As the week wore on I gradually felt better but now I have this nagging cough that refuses to leave! It is really tiring and annoying! But I haven't had time to go to the doctor because all my time has been spent at PT for my hips. My hips are quite a bit better, but not 100%.
Sat. we had another Christmas party which went surprisingly well. I brought a crapload of "safe" food for me and for once I did not feel deprived. It was all stuff that was pretty easy to make and didn't require a lot of arm strength. New Year's Eve we went out for dinner which my stomach did OK with, but then I got a migraine and had to head to bed WAY before midnight. I also managed to catch the movie "Les Miserables" I'd been dying to see. We had dinner with my family on New Year's Day and that was awful. There was some type of weird dynamic going on; I personally was not upset that I'd missed Christmas because I don't care about holidays anymore. But apparently some other family members thought it was truly horrible I'd gotten sick on Christmas. They thought I had to "make up for it" by being there on New Years? But frankly I didn't care at all. I was exhausted from all the coughing and the migraines brought on by the coughing. Holidays are NOT fun for me anymore and I just wanted to be at home, curled up in a warm blanket with my kitties on my lap. Would they have RATHER I showed up Christmas Day and sneezed all over them so they could get the flu?! Why did they want to squeeze out the tiny bit of energy I had left now?
When I went to eat my food I had my usual pile of vitamins and supplements and someone made a comment about those. That pissed me off. Also someone asked what I got for Christmas and the first thing I thought of to mention was my new juicer, since it was the LARGEST present I received. This family member then proceeded to tell me that juicing was weird. I told them that I wanted to try it because I thought it might help my stomach. After it was all over I was pretty much pissed off for everyone trying to insinuate I was a sick freaky person, and I just wanted to get out of there ASAP.
The next day I went to work and one of my co-workers informed me I had lost weight. I was like gee thanks lady. That's all I need. Thanks for boosting my confidence there. I'm just lucky I survived!
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