I had to do it. I had to start prednisone again. The pain and limited mobility just got to be too much. But, I was given the choice to start it, in fact I had 2 prescriptions: I filled one and had it ready just in case, the other is on hold at the pharmacy and I can fill later if I need it again. Sad but true., I always have one on back-up! The one I had already filled I sometimes carried with me when my pain got to be an "8" on my pain scale. I was tempted to start it many times before today but I resisted as much as I could. I've been holding out for 2 weeks. I really, really did not want to have to take it! Another reason I waited was that my pain varied, it would get really intense several times a day but with the muscle relaxers, rest and ice, would come back down to a "5". However, because I was compensating with the rest of my body for the pain in my shoulder, everything else got affected: biceps, triceps, trapezium, and wrists. I'm having to wear wrist splints so I don't continue injuring them, but when I use them in puts the strain back in my arm and shoulders. I am so exhausted at the end of the day! In the end, EDS won over my will power. I'll be seeing the pain management doc in 1 month exactly and we'll talk about trigger point injections and cervical facet numbing at that time. Right now I need some relief...there are no brownie points for suffering.
I visited the new migraine doctor. He's actually an internist but has a specialty in treating migraines related to Ehlers-Danlos. He recently co-authored a paper on the subject with Dr. Tinkle, who is world-renowned on EDS. The doc, tested and confirmed the seriousness of my postural orthostatic tachycardic syndrome (POTS). He took my blood pressure lying down: 112/88 (I'm pretty sure) and when he stood me up it dropped to 92/66. I was so dizzy I had to hold on to a table and my chest was hurting! He said it was no wonder I was always fatigued and the significant drop put me at risk of passing out, in fact, he was surprised that I haven't passed out yet. I said it happened all the time, even while walking. He prescribe Fluorinef to help retain water (great, as if I weren't already) and raise blood pressure. Guess what Fluorinef is???? Yep, cortisone! Gatorade isn't cutting it, but I told him I noticed the difference when I did and didn't take it; when I take it the auras are not present. This confirmed it for him.
I guess all roads lead to prednisone. Could it be any more obvious? Even the trigger point injections have cortisone in the them. I know there will always be some well wisher or just someone who believes they have found the fountain of youth and cure to all ailments: vegetarians, vegan, organics, hydroponics, vitamins C, B, D, Calcium, Magnesium, Potassium, Fish oil and Omega 3's, CoQ10, ginger, honey, cinnamon, high protein, low carb, no carb....I have been there and I have done that! I still do some, many of these. But, there is no magic bullet. There is no cure. There is management. Part of that management is a healthy lifestyle and that is where these fall. I love my family and friends. I am tired of advice. Please understand, being tired of advice does not make me resistant to being helped. It also does not mean that I do not want to feel better. It means I must be careful with what I put in my body, because even seemingly harmless things can cause devastation. For example, TENS and massage have been harmful, so accupuncture is contraindicated; please do not insist! It also means that if it had any hope of making me feel better, LEGITIMATELY, I would have looked at it, and/or so would my team of doctors. But, please don't stop caring, I still need love :) that doesn't hurt.
As always trusting and listening...
Friday, July 6, 2012
Monday, July 2, 2012
Grey and Drab or Green and Alive
Well I'm pretty much set to go for the acid reflux surgery. All I need to do is call the doctor's office and tell them I want a to schedule. It was confirmed that I have the hiatal hernia, it's not big but it's something that has to be "fixed" anyway. The surgeon asked "are you ready to start feeling better?" Is that a trick question? I told him first needed to see the orthopedic surgeon for my neck and shoulder. This will mean another x-ray and MRI. He mentioned he and the ortho, who see each other in the OR's, spoke about me as they were passing each other!! LOL!! He said poor Dr. Shanti had lost sleep worrying about me and how to help because my symptoms showed up post-surgery. (Dr. Shanti is such a sweetheart and always runs on time too!) I'll see him on Thursday. They're going to do an x-ray in office, but if an MRI requires precert which can take a week and up to two to get approved. I can be a week into healing from the acid reflux surgery before the approval comes in. On a funny note, pretty soon I'm going to start glowing in the dark with all this radiation!
I met with the new physical therapist today. I was referred to her by the rheumatologist becuase she specializes in hypermobility (same thing as EDS). She was fantastic! She taped me all up using physio-tape, with the purpose of assisting and supporting my joints and muscles into the correct positions and not be fatigued or overworked. As she was putting the tape up, I could feel the difference it made! The left shoulder felt like it was in place and I wasn't working as hard to hold it up; the right shoulder felt less fatigued from compensating for the left. She taped the back and I felt my posture straighten even more! I already have good posture, but I have to work HARD use all of my muscles to keep it up. The tape relieved the overburned muscles and I was able to straighten up normally...RELAXED. She taped the lower back and I felt my stomach muscles loosen up! It was unbelievable! Had I not experienced it myself I would NOT have believed that this simple method would offer such relief! I could breathe. I could take DEEP breaths! My stomach was not clenched! The best way to describe it is that my body felt...quiet. The therapist asked what level of pain was compared to when I got there. I was at a 5 on arrival, which is my baseline: constant pain that needs to be managed but isn't becuase there is nothing to manage it with. I was at a 3 after the taping!!! I have experienced less than a 5 on two previous occassion: the first day of morphine post spine fusion in December 2012, the body gets used to it after that 1st dose (then I developed an allergic reaction); the 1st and only week that Lyrica worked for me in 2009.
I don't want to get overexcited about the tape. The tape will get wet, stretch, etc. and I'll have to endure the weekend until my next visit. But, I also know the tape is only a temporary tool while the therapist and I work exercises, proper mechanical movements, posture, balance, breathing, etc. She was glad to hear that I was already doing some Pilates and core excercices. They don't get very many people who stay active and continue to stretch and move their body even when it's in pain. (PAT ON THE BACK FOR ME: YAY ME!!!)
Meanwhile, I also have to go to the GYN. To complicate matters, Mirena isn't working for me. Surprising? I think not! A check up, some blood work. First, is Mirena in place? Second, any new cysts or endometriosis? That would mean biopsy...I will leave it there. At this point I don't want to think about any other possible ramifications. But, we have tried everything else....
However, I have a bad feeling about the left arm and shoulder pain. The previous physical therapist and this new one both think the pain and numbing stem from cervical vertebrae issue. This is what my feeling is too. I'm bracing for impact.
Looking on the positive side, ask and you shall receive: I know I landed with the right physical therapist! I like that she's going to incorporate the Pilates and core exercises, deep breathing, mechanical movements, etc and I LOVE the taping! Yes, more taping please!!!
There are times when it just doesn't seem to stop. Things just keep coming. I have to keep reminding myself to look at the positive, to look at was green and alive, instead of what's grey and drab (thanks Dr. Richardson). Sometimes, I'm so exhausted from keeping my body upright, holding my neck straight on my shoulders, reminding myself to unclench my stomach, to relax the shoulders, to breathe. This makes the green easy to loose sight of. Perhaps, becuase I'm NOT breathing, or becuase my head weighs too much on my neck. Perhaps this make the grey so easy to focus on. Let's hope that this new person has been brought into my life to lighten my load. Perhaps I have just had a glimpse of the green, the light, the life, the vibrancy and the calm and am greedy for more.
How much grey is left? The green is coming.
I asked for the Doctor of doctors...we'll see what lies ahead and continue trusting that all will be well. The green is coming. I continue listening...
I met with the new physical therapist today. I was referred to her by the rheumatologist becuase she specializes in hypermobility (same thing as EDS). She was fantastic! She taped me all up using physio-tape, with the purpose of assisting and supporting my joints and muscles into the correct positions and not be fatigued or overworked. As she was putting the tape up, I could feel the difference it made! The left shoulder felt like it was in place and I wasn't working as hard to hold it up; the right shoulder felt less fatigued from compensating for the left. She taped the back and I felt my posture straighten even more! I already have good posture, but I have to work HARD use all of my muscles to keep it up. The tape relieved the overburned muscles and I was able to straighten up normally...RELAXED. She taped the lower back and I felt my stomach muscles loosen up! It was unbelievable! Had I not experienced it myself I would NOT have believed that this simple method would offer such relief! I could breathe. I could take DEEP breaths! My stomach was not clenched! The best way to describe it is that my body felt...quiet. The therapist asked what level of pain was compared to when I got there. I was at a 5 on arrival, which is my baseline: constant pain that needs to be managed but isn't becuase there is nothing to manage it with. I was at a 3 after the taping!!! I have experienced less than a 5 on two previous occassion: the first day of morphine post spine fusion in December 2012, the body gets used to it after that 1st dose (then I developed an allergic reaction); the 1st and only week that Lyrica worked for me in 2009.
I don't want to get overexcited about the tape. The tape will get wet, stretch, etc. and I'll have to endure the weekend until my next visit. But, I also know the tape is only a temporary tool while the therapist and I work exercises, proper mechanical movements, posture, balance, breathing, etc. She was glad to hear that I was already doing some Pilates and core excercices. They don't get very many people who stay active and continue to stretch and move their body even when it's in pain. (PAT ON THE BACK FOR ME: YAY ME!!!)
Meanwhile, I also have to go to the GYN. To complicate matters, Mirena isn't working for me. Surprising? I think not! A check up, some blood work. First, is Mirena in place? Second, any new cysts or endometriosis? That would mean biopsy...I will leave it there. At this point I don't want to think about any other possible ramifications. But, we have tried everything else....
However, I have a bad feeling about the left arm and shoulder pain. The previous physical therapist and this new one both think the pain and numbing stem from cervical vertebrae issue. This is what my feeling is too. I'm bracing for impact.
Looking on the positive side, ask and you shall receive: I know I landed with the right physical therapist! I like that she's going to incorporate the Pilates and core exercises, deep breathing, mechanical movements, etc and I LOVE the taping! Yes, more taping please!!!
There are times when it just doesn't seem to stop. Things just keep coming. I have to keep reminding myself to look at the positive, to look at was green and alive, instead of what's grey and drab (thanks Dr. Richardson). Sometimes, I'm so exhausted from keeping my body upright, holding my neck straight on my shoulders, reminding myself to unclench my stomach, to relax the shoulders, to breathe. This makes the green easy to loose sight of. Perhaps, becuase I'm NOT breathing, or becuase my head weighs too much on my neck. Perhaps this make the grey so easy to focus on. Let's hope that this new person has been brought into my life to lighten my load. Perhaps I have just had a glimpse of the green, the light, the life, the vibrancy and the calm and am greedy for more.
How much grey is left? The green is coming.
I asked for the Doctor of doctors...we'll see what lies ahead and continue trusting that all will be well. The green is coming. I continue listening...
Tuesday, June 26, 2012
Hamster on a Wheel
Well, we all know pain is not a new feeling, experience or event for me. So here I am again. But, this time it's a little different, I can't raise my arms and my shoulders and neck hurt to even touch. I wondered if it was because of the TENS unit or Methotrexate withdrawal, but I searched information on these subjects and neither of them had contraindications. The closest I came to my question was that the TENS can cause muscle soreness if used all day or too long the same day. However, it should not cause pain to this extent. TENS should feel soothing, even in its muscle soreness; it should be a "good" soreness, like after working out and getting in a hot tub. I understand that with the EDS my response to any treatment will be different, apparently, even the response I have to "soothing" treatments. Sheesh!
I called the pain management clinic to get trigger point injections as they had said. After all, I can't use medication so I figured they could get me right in. Nope. The soonest they could get me in....17 days!!!!!!! I have pain NOW!!! In 17 days I'll be in AGONY!!! I will have gone to the ER! Not to mention I'll be in recovery from surgery so I may not even be able to make that appointment. Surgery + Agony from Muscle Pain - Pain Medication = I don't even want to think about it!!!! Really??? 17 days is the earliest you can get me in??? You're a pain clinic!!!
I decided to put in a call to the Orthopedic Surgeon and go the route I did not want to go...Prednisone. Yes, it's THAT BAD! The Physical Therapist had spoken to him about the cervical instability and radiating shoulder so the doc had a heads up. He said the doc said to just to call and he'd call a prescription for the prednisone and/or get me in to see him. I let the nurse know that I couldn't raise my arms and that it was painful to touch. I also let them know about the trigger point injections (maybe he'll do them?) and that the pain management center couldn't see me for 17 days. However, my biggest worry? That C-3 has gotten worse since it was already starting to bulge. Problems in C-3 and C-8 present as muscle and weakness in shoulder and neck area. It is not unusually for vertebrae above and below fused vertebrae to become herniated as they have to compensate in flexibility for the fused vertebrae that are no longer as flexible. In EDS this is exacerbated even more, especially in those with hypermobility of the spine (like me) because the spine is supposed to be even more flexible.
It feels as if one thing gets fixed, or at least it seems as if I'm getting a step-up on things, another thing breaks. I recently explained it better as feeling like I'm in a hamster wheel. I'm running, spinning, putting forth all this effort and getting nowhere. I'm exhausted! Of course, I'm not literally in a hamster wheel, that would be silly! What I mean is, it may be time to get off the wheel and accept that Prednisone is not my enemy. It may allow me to live with little (or no) pain, do physical therapy, do pilates, go grocery store.. in other words live a semi-normal life. But I admit, I'm scared, terrified, about the weight gain. People are so judgmental! I can never go back to Puerto Rico, talk about judgemental people, where the first thing out of people's mouths is: "you used to be so pretty, what happened to you? too much ice cream?" They have no idea: 3 surgeries in 7 months and many more looming in my future, a minimum pain level of 5 everyday. But, can I blame them when I judge myself so harshly? It's hard for me to look in the mirror and remember the girl that looked back used to be a size 0, then she turned into a size 14, and sometimes she becomes a size 16 if she's been on prednisone for a month (did you notice that I went from 1st person to 3rd person?). It's hard and sad for me, because being on prednisone means there's no chance I'll ever get back there again. And those people for Puerto Rico are right, she used to be so beautiful.
As always, leaning on faith to lead me down the right path. Trusting that God, Doctor of doctors, will lead my doctors down the right path towards my healing. Believing that the Universe has conspired for my greatest good. Listening for answers...
I called the pain management clinic to get trigger point injections as they had said. After all, I can't use medication so I figured they could get me right in. Nope. The soonest they could get me in....17 days!!!!!!! I have pain NOW!!! In 17 days I'll be in AGONY!!! I will have gone to the ER! Not to mention I'll be in recovery from surgery so I may not even be able to make that appointment. Surgery + Agony from Muscle Pain - Pain Medication = I don't even want to think about it!!!! Really??? 17 days is the earliest you can get me in??? You're a pain clinic!!!
I decided to put in a call to the Orthopedic Surgeon and go the route I did not want to go...Prednisone. Yes, it's THAT BAD! The Physical Therapist had spoken to him about the cervical instability and radiating shoulder so the doc had a heads up. He said the doc said to just to call and he'd call a prescription for the prednisone and/or get me in to see him. I let the nurse know that I couldn't raise my arms and that it was painful to touch. I also let them know about the trigger point injections (maybe he'll do them?) and that the pain management center couldn't see me for 17 days. However, my biggest worry? That C-3 has gotten worse since it was already starting to bulge. Problems in C-3 and C-8 present as muscle and weakness in shoulder and neck area. It is not unusually for vertebrae above and below fused vertebrae to become herniated as they have to compensate in flexibility for the fused vertebrae that are no longer as flexible. In EDS this is exacerbated even more, especially in those with hypermobility of the spine (like me) because the spine is supposed to be even more flexible.
It feels as if one thing gets fixed, or at least it seems as if I'm getting a step-up on things, another thing breaks. I recently explained it better as feeling like I'm in a hamster wheel. I'm running, spinning, putting forth all this effort and getting nowhere. I'm exhausted! Of course, I'm not literally in a hamster wheel, that would be silly! What I mean is, it may be time to get off the wheel and accept that Prednisone is not my enemy. It may allow me to live with little (or no) pain, do physical therapy, do pilates, go grocery store.. in other words live a semi-normal life. But I admit, I'm scared, terrified, about the weight gain. People are so judgmental! I can never go back to Puerto Rico, talk about judgemental people, where the first thing out of people's mouths is: "you used to be so pretty, what happened to you? too much ice cream?" They have no idea: 3 surgeries in 7 months and many more looming in my future, a minimum pain level of 5 everyday. But, can I blame them when I judge myself so harshly? It's hard for me to look in the mirror and remember the girl that looked back used to be a size 0, then she turned into a size 14, and sometimes she becomes a size 16 if she's been on prednisone for a month (did you notice that I went from 1st person to 3rd person?). It's hard and sad for me, because being on prednisone means there's no chance I'll ever get back there again. And those people for Puerto Rico are right, she used to be so beautiful.
As always, leaning on faith to lead me down the right path. Trusting that God, Doctor of doctors, will lead my doctors down the right path towards my healing. Believing that the Universe has conspired for my greatest good. Listening for answers...
Saturday, June 23, 2012
On Pain Management
Well, I went to the pain management doctor yesterday. It was an interesting experience. First one doctor comes in, a "Fellow" in pain management and takes my history. He knew what EDS was and knew that it caused disc degeneration, but was surprised that I had so much disc degeneration without sustaining any falls or accidents. I'm surprised that he's surprised; or should I be alarmed? concerned? surprised that I have progressed or degenerated that quickly? He begins asking me about meds I have or have not tried. I was ready! I had made a list of EVERYTHING that I had EVER tried just so they knew that I had exhausted every possible means of therapy before pursuing this path. Again, he was surprised, but also glad that I was so prepared and knowledgeable of my medical history. It really does make it a lot easier for both them and me because it cuts down on redundancy and they see you me different eyes. They see me as a knowledgeable person who is in control of my medical condition, or at least as an active participant in its management. I would recommend this to anyone who needs to seek a second opinion on a particular situation: write down any medications you have tried, if you experienced side effects, if it was helpful or not, and any complimentary treatment you have received and if it was helpful or not; also think of anything that makes your condition better or worse. This will cut down on time and, again, the doctor's will look at you in a different light; you will have the upper hand.
Anyhow, the doctor came back with reinforcements, the treating physician, after all they are usually dealing with narcotics and this is the doctor that signs away his license, and another "Fellow". Not a good sign. The treating physician was knowledgeable in EDS and explained that they generally do not like to use narcotics in EDS because pain is generally chronic and tends to increase necessitating the need for a increase in medication. Furthermore, my history to sensitivity to opioids made it hard to treat and indicated that what LITTLE options were available should be reserved for the event of a serious injury or future surgeries when they would really be needed (i.e. Dilaudid and Fentanyl). He knew that I had exhausted non-narcotic treatment options such as Neurontin, Cymbalta, Lyrica and could not take Naproxen and anther NSAID's. It boiled right down to: THERE ARE NO MEDS WE CAN GIVE YOU. My heart sank...I would have to live with this every single day...on a good day a pain level of 5...on a bad day 8...and on a really bad day wanting to go to the hospital. Bear in mind I'm not talking about migraines, this is just EDS pain.
However, he suggested that I use of a TENS unit, and explained that the electrical stimulation offered the same pain relief as an Oxycodone. I could use it as much as I needed and anywhere I needed. He also stated that they could do trigger point injections on an as needed basis. He offered to do them that day because he could feel how tense the muscle was. I told him, that was at a pain level of 5 so it was pretty bearable at that point. Since they can only do these injections about every 3 months, and for me, they only last about 1 week, I would wait until an 8 or above (i.e. hospital level).
Yesterday I also had an upper GI with barium and confirmed that I do have a hiatal hernia and reflux. I knew about the reflux, no surprise there. But the hernia was confirmed. Well, besides the Prednisone weight, which thankfully is slowly starting to come off, the hernia explains the bloating in my upper stomach. Anything I eat or drink gets stuck in the esophagus and is slow to pass through into the stomach. Plus it is refluxed and well....you have a perfect bloat! As I was doing the test the Radiologist Doctor said the little bits of barium the had me drink were being refluxed immediately. I wasn't even feeling that, but he could see it! YUCK!
Well, yesterday was a day of conflicting emotions. I was happy the hernia was confirmed. It's and easy fix that's taken care of in the same acid reflux surgery. I was also happy that there was an explanation for this bloating and stomach distention! I knew it wasn't my eating, any little thing I ate or drank, made me puff up and I could hardly breathe, so I knew it had to be something else. I felt relieved that once I have the surgery I'd be able to breathe normally after drinking a cup of water and the bloat would fix itself.
Then, after the pain management visit, I was left almost numb becuase I didn't want to consider all the implications of what they had just told me. But, once I processed them, I'm left worried and disappointed, but I guess I got something out of it. I'm worried about what I'll be able to take for the pain after the surgery. It's not spine surgery, but it's going to be uncomfortable (to say the least) and Tylenol just isn't going to cut it. The TENS unit is great, so it made the visit worth it. But, I just don't feel comfort that there isn't really a medicine out there for me if there is more severe and generalized degeneration; was that doctor surprised about my degeneration so far? The Rheumy is going to have me start Celebrex for inflammation after I'm healed from the surgery, but it takes a month or so to kick in. He's also thinking that prednisone will be the only option for me. I guess in a way that constitutes pain management....does it? should it be something to pursue this early, or when I'm in a constant level 8 pain?
As always in faith...I'm listening for answers to my questions, to being led to right decision for me. Sometimes answers come in the form of feeling at peace with the decision we make.
Anyhow, the doctor came back with reinforcements, the treating physician, after all they are usually dealing with narcotics and this is the doctor that signs away his license, and another "Fellow". Not a good sign. The treating physician was knowledgeable in EDS and explained that they generally do not like to use narcotics in EDS because pain is generally chronic and tends to increase necessitating the need for a increase in medication. Furthermore, my history to sensitivity to opioids made it hard to treat and indicated that what LITTLE options were available should be reserved for the event of a serious injury or future surgeries when they would really be needed (i.e. Dilaudid and Fentanyl). He knew that I had exhausted non-narcotic treatment options such as Neurontin, Cymbalta, Lyrica and could not take Naproxen and anther NSAID's. It boiled right down to: THERE ARE NO MEDS WE CAN GIVE YOU. My heart sank...I would have to live with this every single day...on a good day a pain level of 5...on a bad day 8...and on a really bad day wanting to go to the hospital. Bear in mind I'm not talking about migraines, this is just EDS pain.
However, he suggested that I use of a TENS unit, and explained that the electrical stimulation offered the same pain relief as an Oxycodone. I could use it as much as I needed and anywhere I needed. He also stated that they could do trigger point injections on an as needed basis. He offered to do them that day because he could feel how tense the muscle was. I told him, that was at a pain level of 5 so it was pretty bearable at that point. Since they can only do these injections about every 3 months, and for me, they only last about 1 week, I would wait until an 8 or above (i.e. hospital level).
Yesterday I also had an upper GI with barium and confirmed that I do have a hiatal hernia and reflux. I knew about the reflux, no surprise there. But the hernia was confirmed. Well, besides the Prednisone weight, which thankfully is slowly starting to come off, the hernia explains the bloating in my upper stomach. Anything I eat or drink gets stuck in the esophagus and is slow to pass through into the stomach. Plus it is refluxed and well....you have a perfect bloat! As I was doing the test the Radiologist Doctor said the little bits of barium the had me drink were being refluxed immediately. I wasn't even feeling that, but he could see it! YUCK!
Well, yesterday was a day of conflicting emotions. I was happy the hernia was confirmed. It's and easy fix that's taken care of in the same acid reflux surgery. I was also happy that there was an explanation for this bloating and stomach distention! I knew it wasn't my eating, any little thing I ate or drank, made me puff up and I could hardly breathe, so I knew it had to be something else. I felt relieved that once I have the surgery I'd be able to breathe normally after drinking a cup of water and the bloat would fix itself.
Then, after the pain management visit, I was left almost numb becuase I didn't want to consider all the implications of what they had just told me. But, once I processed them, I'm left worried and disappointed, but I guess I got something out of it. I'm worried about what I'll be able to take for the pain after the surgery. It's not spine surgery, but it's going to be uncomfortable (to say the least) and Tylenol just isn't going to cut it. The TENS unit is great, so it made the visit worth it. But, I just don't feel comfort that there isn't really a medicine out there for me if there is more severe and generalized degeneration; was that doctor surprised about my degeneration so far? The Rheumy is going to have me start Celebrex for inflammation after I'm healed from the surgery, but it takes a month or so to kick in. He's also thinking that prednisone will be the only option for me. I guess in a way that constitutes pain management....does it? should it be something to pursue this early, or when I'm in a constant level 8 pain?
As always in faith...I'm listening for answers to my questions, to being led to right decision for me. Sometimes answers come in the form of feeling at peace with the decision we make.
Thursday, June 21, 2012
Exhausted and looking forward to...
I...am...exhausted. I'm so exhausted I would not be able to express to you with words how exhausted I am because I would not be able to speak. I can't think. I can't read a book. I want to, I just can't.
It's been a long week with doctor appointments, physical therapy, mine and Ian's, Jan's driving school and their baseball schedule...and that's without having to stay for their games and practices. Yes, judgmental mothers of the world, I am one of THOSE mothers, that drops her kids off at practice and leaves without setting foot outside of the car! It just goes to show you, that you never know peoples' circumstances. Maybe THAT person is suffering from an illness and isn't just dropping the kids off because she thinks its a babysitting service, maybe she just can't stay because the sun makes her sick, because her backs REALLY hurts, (and all of her other joints too), because she has surgery coming up and needs to get her affairs in order, or maybe she's caring for another family member, who is going through something like this. Well, that's my two cents. Anyway, Mark gets to ALL the games and practices and cheers them on and is the supportive parent, LOL.
I'm also overwhelmed. This week alone there were 8 medical appointments: vocal test, rheumatologist, physical therapy (me), physical therapy (Ian), surgeon (new), MH therapy, pain management (new), barium x-ray with swallow for upper GI (diagnostic for pre-surgery). This is about an average week of medical appointments, only the doctors, tests and days of the week change. Its a lot to handle! And driving is so painful! I also have to add, I am scared to see new doctors. So far, this week I have been SOOOOO lucky, in that they have been EXTREMELY friendly, they have made me feel at ease from the very first minute, and have been VERY knowledgeable in EDS!!! In fact, the surgeon asked for a test pre-surgery saying he would be surprised if I DIDN'T have a hiatal hernia because it's so common in EDS and I already have the advance GERD that goes with it! The Gastro that referred me, who is also relatively new, is such a sweetheart too! But, tomorrow I see the pain management people and I'm so scared that they'll think all I want is pain drugs. I'm sure they see that a lot, and I do want them to be able to find SOMETHING that I can use, especially post-surgery, but their facility has so many resources: TENS, PT, electro-stim therapy, ultrasound...that I know would be useful to me. Besides, I'm allergic to so many pain meds, that have got to know I'm not drug seeking! I'm also willing to do the work to feel better, but there HAS to be SOMETHING to at least EASE the pain when it gets really really bad.
With how overwhelming this all is, I hesitate,(roll my eyes and want to slap someone) when I hear, "maybe you should get a second opinion..." I think the medical team I have really is doing the best they can considering my circumstances. I have changed doctors when I have felt uncomfortable or felt that their attention and care has been sub par. I know that "a second opinion never hurts" but when a third and fourth are being sought it gets to be too much. At some point, there has to be a decision made, you have to follow your gut, there needs to be continuity of care. There will always be someone that says their doctor is better, or such and such professional went to a better school, that's all great but how are their bedside manners? what about rapport? what about treating the individual, not just the symptoms or the medication, as in complicated cases like me? There is no textbook for people like me...they have to think outside the box! LOL
It may sound odd, but I'm actually looking forward to the surgery because it means there will be a recovery period. I need a break. I need to slow down...without feeling guilty about it...without worrying about dinner, folding laundry, driving anywhere...
It's been a long week with doctor appointments, physical therapy, mine and Ian's, Jan's driving school and their baseball schedule...and that's without having to stay for their games and practices. Yes, judgmental mothers of the world, I am one of THOSE mothers, that drops her kids off at practice and leaves without setting foot outside of the car! It just goes to show you, that you never know peoples' circumstances. Maybe THAT person is suffering from an illness and isn't just dropping the kids off because she thinks its a babysitting service, maybe she just can't stay because the sun makes her sick, because her backs REALLY hurts, (and all of her other joints too), because she has surgery coming up and needs to get her affairs in order, or maybe she's caring for another family member, who is going through something like this. Well, that's my two cents. Anyway, Mark gets to ALL the games and practices and cheers them on and is the supportive parent, LOL.
I'm also overwhelmed. This week alone there were 8 medical appointments: vocal test, rheumatologist, physical therapy (me), physical therapy (Ian), surgeon (new), MH therapy, pain management (new), barium x-ray with swallow for upper GI (diagnostic for pre-surgery). This is about an average week of medical appointments, only the doctors, tests and days of the week change. Its a lot to handle! And driving is so painful! I also have to add, I am scared to see new doctors. So far, this week I have been SOOOOO lucky, in that they have been EXTREMELY friendly, they have made me feel at ease from the very first minute, and have been VERY knowledgeable in EDS!!! In fact, the surgeon asked for a test pre-surgery saying he would be surprised if I DIDN'T have a hiatal hernia because it's so common in EDS and I already have the advance GERD that goes with it! The Gastro that referred me, who is also relatively new, is such a sweetheart too! But, tomorrow I see the pain management people and I'm so scared that they'll think all I want is pain drugs. I'm sure they see that a lot, and I do want them to be able to find SOMETHING that I can use, especially post-surgery, but their facility has so many resources: TENS, PT, electro-stim therapy, ultrasound...that I know would be useful to me. Besides, I'm allergic to so many pain meds, that have got to know I'm not drug seeking! I'm also willing to do the work to feel better, but there HAS to be SOMETHING to at least EASE the pain when it gets really really bad.
With how overwhelming this all is, I hesitate,(roll my eyes and want to slap someone) when I hear, "maybe you should get a second opinion..." I think the medical team I have really is doing the best they can considering my circumstances. I have changed doctors when I have felt uncomfortable or felt that their attention and care has been sub par. I know that "a second opinion never hurts" but when a third and fourth are being sought it gets to be too much. At some point, there has to be a decision made, you have to follow your gut, there needs to be continuity of care. There will always be someone that says their doctor is better, or such and such professional went to a better school, that's all great but how are their bedside manners? what about rapport? what about treating the individual, not just the symptoms or the medication, as in complicated cases like me? There is no textbook for people like me...they have to think outside the box! LOL
It may sound odd, but I'm actually looking forward to the surgery because it means there will be a recovery period. I need a break. I need to slow down...without feeling guilty about it...without worrying about dinner, folding laundry, driving anywhere...
Friday, June 15, 2012
My new pain scale
I've devised a new pain scale for myself. From 0-10: 0 means no pain (not surprising), 5 means pain is present but is tolerable, (again, not surprising). here is where I change it up: 8 means pain is really intense and I'm not getting any relief from any of my meds, tears are starting to come to my eyes and I'm continually asking myself, why must there be so much pain? why? why? why? I'm pacing myself because the pain can only get worse and the next steps are drastic steps. 9 means I would consider going to a hospital. I'm generally reluctant about this because the first thing doctors unfamiliar with me or a patient like me think is "drug seeker", then they're stumped because I'm allergic to everything and go into a "we don't know what we can do to help you" mode. The hospital generally ends up being a loooooong waste of time for a few short hours of relief, if any relief at all. 10 means I would think about taking my life because its just too much to bear; I haven't gotten there yet, thank God! Right now I would say I'm at an 8. Nothing is helping and the nearest doctor visit is Tuesday; this will be a long weekend for me and I will medicate as necessary to make it to Tuesday. Desperation is starting to set in. At this point, and under these circumstances, I would have to reconsider not wanting to taking prednisone ever again.
I can't read a book or my kindle because I can't hold it up, my arm is too weak and the circulation drops so I get pins and needles. I can't watch TV because my neck can't hold my head up, or at least that's how it feels and with cervical instability from EDS its physically true. Only laying back and staring at the ceiling provides any relief, but how boring is that? I can lay on my sides, any side, for only short periods of time because of the pain and burning in my neck, arm, shoulder and back.
Remember those truly dark days I mentioned in a previous post? This is one of those dark days or week.
In the midst of this, "I" has sunk into a deep depression and enters quasi-catatonic states. He worries me and his therapist and psychiatrist are very worried about him. Even his brother is worried about him and knows he's not being himself because they're not fighting anymore! If by Monday he has not responded to the new med we may have to consider hospitalization. This breaks my heart. For love of my teenage "baby", I lay aside all of my pain in an attempt to rouse him from these states and engage him in activities, conversations and games. I'll have him make choices from what's for dinner, to what TV show to watch, any little thing that will require physical and mental exertion. Despite how painful driving is to me, I will drag him to MH therapy, physical therapy, psychiatrist appointments, and baseball practice, whether he wants to go or not.
However, after all of that, I will collapse at the end of the day and pay for it dearly in mounds and waves of pain that only overmedicating with appease. To make things a little easier on myself, I'm going to have J get his permanent driver's license, hopefully by the end of next week. I this will help lighten the load for me significantly.
As always, in faith, seeking peace....and listening
I can't read a book or my kindle because I can't hold it up, my arm is too weak and the circulation drops so I get pins and needles. I can't watch TV because my neck can't hold my head up, or at least that's how it feels and with cervical instability from EDS its physically true. Only laying back and staring at the ceiling provides any relief, but how boring is that? I can lay on my sides, any side, for only short periods of time because of the pain and burning in my neck, arm, shoulder and back.
Remember those truly dark days I mentioned in a previous post? This is one of those dark days or week.
In the midst of this, "I" has sunk into a deep depression and enters quasi-catatonic states. He worries me and his therapist and psychiatrist are very worried about him. Even his brother is worried about him and knows he's not being himself because they're not fighting anymore! If by Monday he has not responded to the new med we may have to consider hospitalization. This breaks my heart. For love of my teenage "baby", I lay aside all of my pain in an attempt to rouse him from these states and engage him in activities, conversations and games. I'll have him make choices from what's for dinner, to what TV show to watch, any little thing that will require physical and mental exertion. Despite how painful driving is to me, I will drag him to MH therapy, physical therapy, psychiatrist appointments, and baseball practice, whether he wants to go or not.
However, after all of that, I will collapse at the end of the day and pay for it dearly in mounds and waves of pain that only overmedicating with appease. To make things a little easier on myself, I'm going to have J get his permanent driver's license, hopefully by the end of next week. I this will help lighten the load for me significantly.
As always, in faith, seeking peace....and listening
Wednesday, June 13, 2012
Lessons about pacing
So much pain. Everything is so hard to do. To make it worse, Mark is out of town and everything is left to me to manage and I just CAN'T DO IT. I can't get the boys to baseball practice after having to drive to doctor's appointments, the pharmacy, and keeping things together in the house. Driving is too painful and my pain is already out of control. In addition, managing a child with Bipolar Disorder takes a lot of energy. I hear the frustration and disappointment in Mark's voice when I tell him "I just can't get them to practice. I just can't drive any more. I just need to stop, rest and let the pills and ice work." Maybe I just think I hear the disappointment in his voice, in the pause after I tell him I can't, I won't. Maybe its just disappointment in myself, in what my body can no longer do, especially after riding high all of last week.
Last week I was feeling good and riding the prednisone wave until it wore off and I crashed...HARD! I can see how it can be confusing for all of us. While the going was good I was cleaning the house and doing some re-organizing. I was able to do some grocery shopping and push myself in physical therapy. I seemed like the person I was a couple of years ago. But, that was last week. Now its gone. Now the pain is so bad sometimes I want to throw up. I even think of going to the hospital just so they can give me even a few short hours of relief, but the hassle of going to the hospital isn't worth it...and whatever they do wont be permanent. I know the muscle relaxers, the ice and rest will allow the irritation to subside and the pain will eventually go away, but for now, the end is nowhere in sight. I can't even think! The pain clouds my thought process, my judgment. I can't hold a book or my kindle in my hands because the pain runs from my neck and shoulder down through my arm. It doesn't matter anyway because I can't concentrate to follow the words on the book...so much for distraction. It's my fault though. I have been reading a couple of books on Hypermobility and EDS and if there's one thing they absolutely stressed it was PACING! During the good times, make sure to schedule rest, during the painful times, schedule more rest...I did not heed their advice. I hope I have learned my lesson. I say hope becuase its still hard not to wish to be who I was, but I will get there...we, as a family, will get there. The mourning will subside and acceptance will come. I already signed Jan up to get his permanent license so that he can help me out more. Mark travels a lot and driving is too much, so Jan can do more...like drive himself and Ian to baseball practice!
I finally gave in and asked the genetics doctor for a referral to pain management. There has to be something to make this at least more tolerable, right? I hadn't pursued this before because on my journey to diagnosis I heard from so many doctors that I was drug dependent, or over medicating, or its just not possible that Cymbalta and Lyrica don't work, or it can't be that bad. I felt judged, insulted, hurt. I felt I was being called a drug addict and a liar. It just made me feel more inadequate and weak. I doubt myself and wondered if there was something wrong with me because I couldn't handle this and maybe everyone else in the world could. But the pain was so unbearable it took my breath away and the medicine they gave me made me sick!!! Now I know, that I actually have an incredibly high threshold for pain and am incredibly stoic, waiting too long before treating my pain. I also learned that according to EDS standards I have been under-medicated all this time. How dare they judge me! How dare they qualify my pain! How dare they make me think I'm weak when I have been incredibly strong!
However, in taking this steps towards formal pain manegement treatment another challenge begins. I pose a treatment conundrum for any doctor. I can't be treated with narcotics/opioids because of allergic reactions which have become progressively worse. I can't take naproxen or ibuprofen because of ulcers. I can't take SSRI's or SNRI's (antidepressants and its relatives, some of which help relieve neuropathic pain) because they worsen the migraines. Right now muscle relaxers are the only thing that are providing any relief, but they pose a danger for Ehlers-Danlos because the longer I take them they higher the likely hood of dislocations and subluxations. Right now I'm taking 3 muscle relaxers at the same time; needless to say, not good for my loose joints as well as for driving. As always, when I see a new doctor I have to begin the process of "convincing" them that "yes I have tried all of these medicines" and they all cause side effects, and "no, I will not try them again" and "no, just because I will not try them again does not make me resistant to treatment". Believe me this can be quite difficult when a doctor has been trained to believe that this MUST work on ALL patients! Hopefully, because the doctor I have been referred to, who is a specialist in patients with EDS, will be more understanding, and will make this process less grueling. I may have to refer THEM to consult with my primary care physician for evidence!
Another reason I waited is that because of these same challenges, I didn't think there was anything left for me to treat pain. I still don't expect much from it. But, now that I have experienced the difference between, me with pain and me without pain, I want more! I researched the UC Pain Management Center and saw the various therapies they offers including TENS, which I think might benefit the scarred tissue in my left shoulder that continues getting irritated and "spastic". I have allowed myself to feel a tiny sparkle, a glimmer, of hope. It's been so hard, disappointing, soul crushing, to go from feeling great to excruciating pain once again. I must say, I don't want to be on prednisone again unless its absolutely necessary, like for asthma or an allergic reaction. As a hypothetical, if presented with the choice between prednisone as a pain relief option and noting else, I really don't know if I would choose the pain. I want to be pain-free, or at least have a better quality of life, but prednisone has too many side effects. Right now I can't wait to loose this weight and feel like myself again. Yes, we are a society that relies on image too much, but such is life. I also don't recognize myself, my body, anymore and that doesn't help me feel any better. Its a vicious cycle:
pain, which requires rest to reduce damage, prednisone to reduce inflammation, prednisone weight gain, rest equals no exercise to lose prednisone weight gain, increased pain because of not exercising :0(
As always, trusting that God will send his angels to guide me along the right path. I continue listening...in faith.
Last week I was feeling good and riding the prednisone wave until it wore off and I crashed...HARD! I can see how it can be confusing for all of us. While the going was good I was cleaning the house and doing some re-organizing. I was able to do some grocery shopping and push myself in physical therapy. I seemed like the person I was a couple of years ago. But, that was last week. Now its gone. Now the pain is so bad sometimes I want to throw up. I even think of going to the hospital just so they can give me even a few short hours of relief, but the hassle of going to the hospital isn't worth it...and whatever they do wont be permanent. I know the muscle relaxers, the ice and rest will allow the irritation to subside and the pain will eventually go away, but for now, the end is nowhere in sight. I can't even think! The pain clouds my thought process, my judgment. I can't hold a book or my kindle in my hands because the pain runs from my neck and shoulder down through my arm. It doesn't matter anyway because I can't concentrate to follow the words on the book...so much for distraction. It's my fault though. I have been reading a couple of books on Hypermobility and EDS and if there's one thing they absolutely stressed it was PACING! During the good times, make sure to schedule rest, during the painful times, schedule more rest...I did not heed their advice. I hope I have learned my lesson. I say hope becuase its still hard not to wish to be who I was, but I will get there...we, as a family, will get there. The mourning will subside and acceptance will come. I already signed Jan up to get his permanent license so that he can help me out more. Mark travels a lot and driving is too much, so Jan can do more...like drive himself and Ian to baseball practice!
I finally gave in and asked the genetics doctor for a referral to pain management. There has to be something to make this at least more tolerable, right? I hadn't pursued this before because on my journey to diagnosis I heard from so many doctors that I was drug dependent, or over medicating, or its just not possible that Cymbalta and Lyrica don't work, or it can't be that bad. I felt judged, insulted, hurt. I felt I was being called a drug addict and a liar. It just made me feel more inadequate and weak. I doubt myself and wondered if there was something wrong with me because I couldn't handle this and maybe everyone else in the world could. But the pain was so unbearable it took my breath away and the medicine they gave me made me sick!!! Now I know, that I actually have an incredibly high threshold for pain and am incredibly stoic, waiting too long before treating my pain. I also learned that according to EDS standards I have been under-medicated all this time. How dare they judge me! How dare they qualify my pain! How dare they make me think I'm weak when I have been incredibly strong!
However, in taking this steps towards formal pain manegement treatment another challenge begins. I pose a treatment conundrum for any doctor. I can't be treated with narcotics/opioids because of allergic reactions which have become progressively worse. I can't take naproxen or ibuprofen because of ulcers. I can't take SSRI's or SNRI's (antidepressants and its relatives, some of which help relieve neuropathic pain) because they worsen the migraines. Right now muscle relaxers are the only thing that are providing any relief, but they pose a danger for Ehlers-Danlos because the longer I take them they higher the likely hood of dislocations and subluxations. Right now I'm taking 3 muscle relaxers at the same time; needless to say, not good for my loose joints as well as for driving. As always, when I see a new doctor I have to begin the process of "convincing" them that "yes I have tried all of these medicines" and they all cause side effects, and "no, I will not try them again" and "no, just because I will not try them again does not make me resistant to treatment". Believe me this can be quite difficult when a doctor has been trained to believe that this MUST work on ALL patients! Hopefully, because the doctor I have been referred to, who is a specialist in patients with EDS, will be more understanding, and will make this process less grueling. I may have to refer THEM to consult with my primary care physician for evidence!
Another reason I waited is that because of these same challenges, I didn't think there was anything left for me to treat pain. I still don't expect much from it. But, now that I have experienced the difference between, me with pain and me without pain, I want more! I researched the UC Pain Management Center and saw the various therapies they offers including TENS, which I think might benefit the scarred tissue in my left shoulder that continues getting irritated and "spastic". I have allowed myself to feel a tiny sparkle, a glimmer, of hope. It's been so hard, disappointing, soul crushing, to go from feeling great to excruciating pain once again. I must say, I don't want to be on prednisone again unless its absolutely necessary, like for asthma or an allergic reaction. As a hypothetical, if presented with the choice between prednisone as a pain relief option and noting else, I really don't know if I would choose the pain. I want to be pain-free, or at least have a better quality of life, but prednisone has too many side effects. Right now I can't wait to loose this weight and feel like myself again. Yes, we are a society that relies on image too much, but such is life. I also don't recognize myself, my body, anymore and that doesn't help me feel any better. Its a vicious cycle:
pain, which requires rest to reduce damage, prednisone to reduce inflammation, prednisone weight gain, rest equals no exercise to lose prednisone weight gain, increased pain because of not exercising :0(
As always, trusting that God will send his angels to guide me along the right path. I continue listening...in faith.
Thursday, June 7, 2012
On feelings
A friend asked that I write more about my feelings and how I'm coping through my ordeal. I pondered this and thought, "but I am writing about my feelings what does he mean?" Then I looked deeper and admitted to myself that, truly, I have been holding back. One reason for this is that, despite all evidence to the contrary (such as this blog :), I don't like to whine about my pain, about my sadness or about my problems in general. Another reason for holding back is that there have been some truly dark days, and I have been afraid to scare the reader. There have been days when I have told myself aloud "I will not be on a 72 hour hold. I can handle this. I have skills and a support system" then proceed to list my phone tree in my head. I do not think it unreasonable for someone who lives in chronic pain and cannot take any pain medication to also have depression and contemplate negative and dark thoughts, even if for a fleeting moment. Rest assured, they are fleeting moments. I love my family too much to give in to such ideas. . Finally, I thought that it might bore the reader with a rehashing of the same feelings. However, if this is to be an autobiographical account of my experience then I must be true and raw as to my experience. So I thank my friend for getting me back on track and to what the original purpose of this blog was meant to be....reader be darned!
With wanting to express my feelings in mind I stopped and asked myself "what would I do with a client in this situation? First, I'd meet them where they're at; then, ask them to focus on what they're feeling not what they're thinking." Keeping this in mind, I searched for where it is that I'm at and came up with: I'm in a place of mourning. I know, mentally, the old me, the old way of life is gone, but its still too recent, too new and emotionally it still hurts. Although I know that old life is gone, I haven't completely assimilated it, there are still things that remind me of that old life and cause me to cry. For example, Sunday I went to my boys' baseball games and even though I was in the shade, with a cool breeze (I was freezing), and I was drinking Gatorade I got dehydrated and near sun poisoning. It just served to remind me that the person who could walk down the beaches of Puerto Rico under the sun and without a care in the world, is gone...she's DEAD and she will NEVER come back. Things will never be the same, EVER!!!
I haven't yet gotten to adapting and becoming the person I'm going to HAVE TO BE to live this new life. I don't know that person yet. I think that as one part dies another part will have to replace it...if I allow it. And that's harder than it sounds. Some things are hard to let go. Even simple things that most people take for granted. For example, sandals! They are so beautiful, come in so many colors and styles, but when I use them I end up with knee pain, back pain and migraine pain (all about spine alignment that starts at the arch of the foot). Sounds like a no-brainer right?? You'd think so, but having experienced so many losses at the hands of this disease already, I want to rebel against losing sandals too! I also want to rebel against having the boys' lives pass me by while I'm stuck in the house (which is why I'm thinking of completing my transformation into full vampire!) Now I can't attend the games between the hours of 8 am - 8 pm (LOL) so I rebel against seeing the disappointment in their faces, and my ensuing feelings of self-hatred at missing yet another game. It feels like Sophie's Choice! Attend the games and risk sun poisoning, dehydration, migraine for 3 days, neck and back pain because I was sitting in a lawn chair through a double-header; or, stay home and make dinner for them, work on my physical therapy exercises to reduce pain and recover as needed, but feel disappointed and disgusted at myself?
In the meantime, after his manic episode, my son has become depressed although, thankfully, not suicidal. His doctor has added Abilify again as an "antidepressant" since he has historically become manic on antidepressants but has responded positively to Abilify. He's been sleeping 14-15 hours a day, looks almost zombie-like, is irritable and cries easily. He doesn't even want to play basketball outside!!! Oh, let me not forget, he got Shingles too, the poor guy :( So now he's on Seroquel, Trileptal and Abilify...no I don't think they're too much, I think they are just right for his condition and the way his symptoms have developed. These are also the only meds that have worked for him.
On a positive note, I started doing some Pilates at home. Just the mat exercises that I've seen on YouTube and in Pilates Style magazine. I have to say I'm pretty proud at myself! I'm not as deconditioned as I thought I was, probably because of the physical therapy. I find the exercises pretty easy to do, which seems to be the norm for Ehlers-Danlos/hypermobile people and continue to astonish myself at the way my body bends and how I can hold certain positions. Maybe I'm being overambitious but....I'd like to be able to do Barre Ballet at some point :)) The Pilates stretches actually feel GOOD on my joints, as if they had been yelling STRETCH ME!!! STRETCH ME!!! After reading on EDS, they probably were so now I'm taking advantage of them. Plus, I've been on prednisone for a month now and really want to get this bloating off.
On a negative, another surgery is looming in the not-so-far future. This would be my 3rd in 6 months. It be acid-reflux surgery. I hate that it's called that becuase I feel it implies that I'm just FAT and eat fatty greasy foods when in truth I eat fruits and yogurt and cereal. Anyway, twe've tried every medication possible to no avail. If it continues untreated the erosions and ulcers in my esophagus could perforate the wall (WHOA!) needing major surgery or could turn cancerous (Double WHOA!). After that, they will check my vocal cords to see if there has been any permanent damage from the reflux. Worst case scenario? You guessed it, another surgery! So I get to worrying, with all my med allergies, what if something happens in surgery? and what can they give me for pain?
As always, I keep praying and listening. I continue to see God's hand in everything I do whether its through moments that might be called "serendipity", a book that reaches my hand at just the right moment, or a person that stops me and says some kind words...just keep listening.
With wanting to express my feelings in mind I stopped and asked myself "what would I do with a client in this situation? First, I'd meet them where they're at; then, ask them to focus on what they're feeling not what they're thinking." Keeping this in mind, I searched for where it is that I'm at and came up with: I'm in a place of mourning. I know, mentally, the old me, the old way of life is gone, but its still too recent, too new and emotionally it still hurts. Although I know that old life is gone, I haven't completely assimilated it, there are still things that remind me of that old life and cause me to cry. For example, Sunday I went to my boys' baseball games and even though I was in the shade, with a cool breeze (I was freezing), and I was drinking Gatorade I got dehydrated and near sun poisoning. It just served to remind me that the person who could walk down the beaches of Puerto Rico under the sun and without a care in the world, is gone...she's DEAD and she will NEVER come back. Things will never be the same, EVER!!!
I haven't yet gotten to adapting and becoming the person I'm going to HAVE TO BE to live this new life. I don't know that person yet. I think that as one part dies another part will have to replace it...if I allow it. And that's harder than it sounds. Some things are hard to let go. Even simple things that most people take for granted. For example, sandals! They are so beautiful, come in so many colors and styles, but when I use them I end up with knee pain, back pain and migraine pain (all about spine alignment that starts at the arch of the foot). Sounds like a no-brainer right?? You'd think so, but having experienced so many losses at the hands of this disease already, I want to rebel against losing sandals too! I also want to rebel against having the boys' lives pass me by while I'm stuck in the house (which is why I'm thinking of completing my transformation into full vampire!) Now I can't attend the games between the hours of 8 am - 8 pm (LOL) so I rebel against seeing the disappointment in their faces, and my ensuing feelings of self-hatred at missing yet another game. It feels like Sophie's Choice! Attend the games and risk sun poisoning, dehydration, migraine for 3 days, neck and back pain because I was sitting in a lawn chair through a double-header; or, stay home and make dinner for them, work on my physical therapy exercises to reduce pain and recover as needed, but feel disappointed and disgusted at myself?
In the meantime, after his manic episode, my son has become depressed although, thankfully, not suicidal. His doctor has added Abilify again as an "antidepressant" since he has historically become manic on antidepressants but has responded positively to Abilify. He's been sleeping 14-15 hours a day, looks almost zombie-like, is irritable and cries easily. He doesn't even want to play basketball outside!!! Oh, let me not forget, he got Shingles too, the poor guy :( So now he's on Seroquel, Trileptal and Abilify...no I don't think they're too much, I think they are just right for his condition and the way his symptoms have developed. These are also the only meds that have worked for him.
On a positive note, I started doing some Pilates at home. Just the mat exercises that I've seen on YouTube and in Pilates Style magazine. I have to say I'm pretty proud at myself! I'm not as deconditioned as I thought I was, probably because of the physical therapy. I find the exercises pretty easy to do, which seems to be the norm for Ehlers-Danlos/hypermobile people and continue to astonish myself at the way my body bends and how I can hold certain positions. Maybe I'm being overambitious but....I'd like to be able to do Barre Ballet at some point :)) The Pilates stretches actually feel GOOD on my joints, as if they had been yelling STRETCH ME!!! STRETCH ME!!! After reading on EDS, they probably were so now I'm taking advantage of them. Plus, I've been on prednisone for a month now and really want to get this bloating off.
On a negative, another surgery is looming in the not-so-far future. This would be my 3rd in 6 months. It be acid-reflux surgery. I hate that it's called that becuase I feel it implies that I'm just FAT and eat fatty greasy foods when in truth I eat fruits and yogurt and cereal. Anyway, twe've tried every medication possible to no avail. If it continues untreated the erosions and ulcers in my esophagus could perforate the wall (WHOA!) needing major surgery or could turn cancerous (Double WHOA!). After that, they will check my vocal cords to see if there has been any permanent damage from the reflux. Worst case scenario? You guessed it, another surgery! So I get to worrying, with all my med allergies, what if something happens in surgery? and what can they give me for pain?
As always, I keep praying and listening. I continue to see God's hand in everything I do whether its through moments that might be called "serendipity", a book that reaches my hand at just the right moment, or a person that stops me and says some kind words...just keep listening.
Wednesday, May 30, 2012
On challenges and loss
I've had a very emotionally and physically draining Memorial day weekend. A week and a half ago my son and I started with asthma possibly because of the heat and high pollen count. We spent the time "sealed" in our house with the central cooling systems fan on so there would some ventilation while having the HEPA filter keeping the house clean.
First, understand my son has been diagnosed with Bipolar and Asperger's and he NEEDS outdoor activity in order to have just the right amount of stimulation for the Asperger's and ventilate negative energy; if he doesn't do this he is NOT the same person! Sunlight, is also, for now (we'll see after the EDS diagnosis), good for because it keep his sleep/wake cycles in balance. So at this point, we're already in trouble. He also had some work to finish on a project in a class he knew he was failing, so sprinkle in a good dose of anxiety. Finally, add to the mix some steroids in the form of a medrol dosepack to throw off his hormones and med balance and you've got just the right combination for a mood disorder and autism meltdown! That's exactly what happened. We had to call 911 in order to keep him and the family safe, and went to Children's Hospital for the psych consult just to make sure we were all on the same page. He already had a regularly schedule therapy appointment the next day and was not a danger to himself or others, so we got to take him home. However, I'm still seeing some of the crankiness which may be the downswing towards depression. I think the old name, "manic-depressive", really captured the essence and swings of the condition. Oh well.
The following day I had 2 doctor's appointments. The first with my orthopedic surgeon. I learned that my C3 vertebrae is starting to bulge a little bit but at this time requires no treatment because its not pinching any nerves. However, it will be routinely monitored because with Ehlers-Danlos I can deteriorate quickly and things can change in no time. I also learned that my neck is completely straight. The doctor explained that is part of the reason for the new bulge and the old herniations, and its what makes me prone to the arthritis of the spine, and may eventually cause bone spurs to develop because the ends of the spine rub up against each other. I'll definitely Google more on this! I also learned the muscles on my left shoulder show scarring because the herniations from C5-C7 went untreated for so long it resulted in damage, hence when I experience muscle spasm they are extremely severe and prolonged. Great! So I will continue PT and use the muscle relaxers as needed but only sporadically so as not to create more medication allergies.
Next appointment was with the Pulmonologist. I had already been on a prednisone pack due to anaphylaxis caused by the MS Contin (morphine sulfate continuous or long acting). I was off a week then I began with asthma symptoms again but Proventil did not seem to be doing anything so I was started on Brovana. It seemed to be helping but I had "coughing fits". He found that my lungs were clear and that I had difficulty on inspiration not expiration, therefore it did not seem as asthma. I did spirometry and a nioxin test and the results supported it was not asthma. He seemed to think I had a vocal cord issue and I confirmed I was schedule to have a vocal cord test because my voice would come and go, become hoarse and had trouble swallowing. AHA! Vocal Cord Dysfunction the great Asthma Imitator, he called it. Apparently, my vocal cords do not open to allow air into my lungs but air can come out...pretty dangerous huh? High dose prednisone on a taper and some antibiotics for a sinus infection. Great, as if I haven't gained enough weight already on the other 2 prednisone packs, now I have take HIGHER doses for a LONGER period of time! Well, I guess not breathing altogether would be worse. I managed to move the vocal test to be done in 2 weeks, he said "tell them the Pulmo said the vocal cord issue is affecting your breathing and needs to be taken care of!" He also said he believes this episode is a direct result of the anaphylaxis...uh,oh! So my throat WAS closing I just didn't know it??? Better keep that EPIPEN even closer!
Next, follow up therapy for my son. Family session between my son and I. He refused to talk at first; I shared my view of things. The therapist did a lot of talking and finally got him to talk. She's so good with him and he really likes her so she gets him to come around. He talked a little more the last few minutes and finally managed a smile or two.
Then I had to run him home, get him a quick bite to eat and get him to his baseball game (all within 30 minutes!). I forgot his evening medicine! Run back home, get my oldest son, grab the meds, drop them off with my husband, run the oldest to his game, come back home. Made it just in the nick of time because I had a nebulizer (breathing treatment machine) that was going to be delivered and the guy was about to leave! My entire body was shaking and I was overheating, not good for ortheostatic tachycardia. My knees were giving out, my ankles hurt, my head was pounding... was it really 7 pm and I really had 1 bowl of cereal and 1 vitamin water all day???
Finally, I had to write a painful email. I wrote to my work supervisors that I would not be coming back to work. As soon as I sent it the email I started crying like a baby. I cried straight non-stop for about an hour and after that, everytime I remembered the email, any of the wonderful co-workers and friends I made at the agency. And of course, I cried when I thought of all the children I had helped or the children I would NOT help. I think I could feel my heart breaking. I could feel ties and bonds severing. It was like a life-line had been lost. I had not worked since December, but being on leave meant there was a chance I would return, there was still a connection to the agency and its members, a connection to those that were and would be my clients, and a direct connection to the Counseling field. It represented a loss in so many ways. A loss of personal vitality, individuality, independence, perseverance, and a loss as my role of advocate and healer. I'll still go to conferences and trainings as much as my body will allow, but it's not the same. I had specialties in my field and was looked to for advice and recommendations. I already feel like an outcast.
I know I was right choice. I really need this time to make the most out of my new treatment plan and get Ian started on his. There will be too many appointments and catastrophic days like yesterday. Too many days unable to breathe and possibly more surgical procedures. Besides, what better way to act as healer and advocate that to be my child's and my own. This was my first step in this new role.
As always, with faith before me, I believe that when one door closes a window opens, and an ending marks a new beginning. There will be better days ahead, let this be the beginning of those days.
First, understand my son has been diagnosed with Bipolar and Asperger's and he NEEDS outdoor activity in order to have just the right amount of stimulation for the Asperger's and ventilate negative energy; if he doesn't do this he is NOT the same person! Sunlight, is also, for now (we'll see after the EDS diagnosis), good for because it keep his sleep/wake cycles in balance. So at this point, we're already in trouble. He also had some work to finish on a project in a class he knew he was failing, so sprinkle in a good dose of anxiety. Finally, add to the mix some steroids in the form of a medrol dosepack to throw off his hormones and med balance and you've got just the right combination for a mood disorder and autism meltdown! That's exactly what happened. We had to call 911 in order to keep him and the family safe, and went to Children's Hospital for the psych consult just to make sure we were all on the same page. He already had a regularly schedule therapy appointment the next day and was not a danger to himself or others, so we got to take him home. However, I'm still seeing some of the crankiness which may be the downswing towards depression. I think the old name, "manic-depressive", really captured the essence and swings of the condition. Oh well.
The following day I had 2 doctor's appointments. The first with my orthopedic surgeon. I learned that my C3 vertebrae is starting to bulge a little bit but at this time requires no treatment because its not pinching any nerves. However, it will be routinely monitored because with Ehlers-Danlos I can deteriorate quickly and things can change in no time. I also learned that my neck is completely straight. The doctor explained that is part of the reason for the new bulge and the old herniations, and its what makes me prone to the arthritis of the spine, and may eventually cause bone spurs to develop because the ends of the spine rub up against each other. I'll definitely Google more on this! I also learned the muscles on my left shoulder show scarring because the herniations from C5-C7 went untreated for so long it resulted in damage, hence when I experience muscle spasm they are extremely severe and prolonged. Great! So I will continue PT and use the muscle relaxers as needed but only sporadically so as not to create more medication allergies.
Next appointment was with the Pulmonologist. I had already been on a prednisone pack due to anaphylaxis caused by the MS Contin (morphine sulfate continuous or long acting). I was off a week then I began with asthma symptoms again but Proventil did not seem to be doing anything so I was started on Brovana. It seemed to be helping but I had "coughing fits". He found that my lungs were clear and that I had difficulty on inspiration not expiration, therefore it did not seem as asthma. I did spirometry and a nioxin test and the results supported it was not asthma. He seemed to think I had a vocal cord issue and I confirmed I was schedule to have a vocal cord test because my voice would come and go, become hoarse and had trouble swallowing. AHA! Vocal Cord Dysfunction the great Asthma Imitator, he called it. Apparently, my vocal cords do not open to allow air into my lungs but air can come out...pretty dangerous huh? High dose prednisone on a taper and some antibiotics for a sinus infection. Great, as if I haven't gained enough weight already on the other 2 prednisone packs, now I have take HIGHER doses for a LONGER period of time! Well, I guess not breathing altogether would be worse. I managed to move the vocal test to be done in 2 weeks, he said "tell them the Pulmo said the vocal cord issue is affecting your breathing and needs to be taken care of!" He also said he believes this episode is a direct result of the anaphylaxis...uh,oh! So my throat WAS closing I just didn't know it??? Better keep that EPIPEN even closer!
Next, follow up therapy for my son. Family session between my son and I. He refused to talk at first; I shared my view of things. The therapist did a lot of talking and finally got him to talk. She's so good with him and he really likes her so she gets him to come around. He talked a little more the last few minutes and finally managed a smile or two.
Then I had to run him home, get him a quick bite to eat and get him to his baseball game (all within 30 minutes!). I forgot his evening medicine! Run back home, get my oldest son, grab the meds, drop them off with my husband, run the oldest to his game, come back home. Made it just in the nick of time because I had a nebulizer (breathing treatment machine) that was going to be delivered and the guy was about to leave! My entire body was shaking and I was overheating, not good for ortheostatic tachycardia. My knees were giving out, my ankles hurt, my head was pounding... was it really 7 pm and I really had 1 bowl of cereal and 1 vitamin water all day???
Finally, I had to write a painful email. I wrote to my work supervisors that I would not be coming back to work. As soon as I sent it the email I started crying like a baby. I cried straight non-stop for about an hour and after that, everytime I remembered the email, any of the wonderful co-workers and friends I made at the agency. And of course, I cried when I thought of all the children I had helped or the children I would NOT help. I think I could feel my heart breaking. I could feel ties and bonds severing. It was like a life-line had been lost. I had not worked since December, but being on leave meant there was a chance I would return, there was still a connection to the agency and its members, a connection to those that were and would be my clients, and a direct connection to the Counseling field. It represented a loss in so many ways. A loss of personal vitality, individuality, independence, perseverance, and a loss as my role of advocate and healer. I'll still go to conferences and trainings as much as my body will allow, but it's not the same. I had specialties in my field and was looked to for advice and recommendations. I already feel like an outcast.
I know I was right choice. I really need this time to make the most out of my new treatment plan and get Ian started on his. There will be too many appointments and catastrophic days like yesterday. Too many days unable to breathe and possibly more surgical procedures. Besides, what better way to act as healer and advocate that to be my child's and my own. This was my first step in this new role.
As always, with faith before me, I believe that when one door closes a window opens, and an ending marks a new beginning. There will be better days ahead, let this be the beginning of those days.
Wednesday, May 23, 2012
The day I got my diagnosis...
I finally had my appointment with the geneticist. Their process is pretty simple. It consists of an initial interview with a genetic counselor but its really more of background gathering not "counseling" really, genetic or otherwise (just a personal irk). She asked questions regarding family history such as "do you know anyone else in your family that has the same problems you have?" I had NO IDEA if anyone else in my family had this type of problem or hypermobile abilities. I know my father and grandfather had long fingers and played the guitar well, so does my oldest son, did that count? Believe me, I keep tabs on my family history and I know who has diabetes and heart disease, who died from a stroke or old age, and of course, I know ALL of the mental health problems diagnosed or not! But this? Did they even have this back then??? This is what they called double "jointed-ness" accompanied by growing pains. I don't think either of those things were ever recognized before my generation. Now its was an ability that is put to use through gymnastics, swimming and its expected side-effects are arthritic like aches and pains and, at its worst, joint dislocations and surgeries. I will add that I did the gymnastic and swimming thing when I was a child and had "growing pains" all the time!
After gathering information, the genetic counselor then meets with the geneticist for a couple of minutes prior to the doctor meeting with me. She gave him the "case history" and put him "up to speed". I could hear them speaking outside my door but I couldn't really make out much of the conversation. I started getting extremely anxious and I felt my heart drop. I couldn't answer the questions about my family history so I couldn't possibly have this, could I??? I had failed the test! This would be another dead end and I would go home with no answers...again.
The doctor came in the room and immediately put me at ease with his awkward geekiness and his huge smile. He reviewed with me what the genetic counselor had just explained to him (impressively accurate for just a 2 minute conversation!). He asked me to stretch a few joints. Then he showed me how my body was stretchy-bendy compared to his. WOW! This was something that I could do easily without gaving it a second thought, my surprise was that others COULD NOT bend that way. And here I thought I was such a wuss, I'M ELASTIGIRL!!! (Ironically, Mark does remind me of Mr. Incredible :)
The doctor then explained that to be diagnosed with Hypermobility, I needed to meet 5 out of 9 hypermobile joints: I had 8 out of 9. I didn't make the 9th because I couldn't put the flat of my palm (my fingers were flat on the floor) to the floor while bending over keeping my knees straight by just about .25 mm...I mean really!? Then he checked for additional hypermobile joints that are not part of the official diagnosis but cause symptoms nonetheless: jaw, knees, and fingers are hypermobile too. He also suspects my inner ear joints which cause frequent ringing in the ear and instability, and he doesn't doubt my spine disks slip in and out which is the popping I keep hearing. He also believes I have cervical instability which exaplains MIGRAINES!!! He added a referral to a EDS/migraine specialist to work on that. I would also have to drink Gatorade everyday because of POTS.
He went on to explain that once Hypermobility is diagnosed Ehlers-Diagnosed is officially diagnosed if the hypermobility is causing significant problems. He said "obviously in your case it is." UNDERSTATEMENT OF THE YEAR!!! With so many hypermobile joints he was surprised I've never dislocated anything and said I would have to wear a medical alert bracelet so special care would be taken in an emergency situation, "they may not know what EDS is but it will cause them to look it up in the book." LOL
However, the single most important statement that doctor said to me was, "day after day we get people like you come into our clinic having heard it all: lupus, arthritis, having surgeries that didn't help, intense pain, migraines, easy bruising, intestinal problems and its good to tell them that there is something that explains all of their symptoms. I bet you've also been told that it's all in your head, that you're just making it up, that its not that bad. The diagnosis doesn't change anything but its very much real. You also have to understand that the changes you're going to have to make are life-long."
I didn't know what I was feeling. I didn't know if I should cry, hug him, laugh....my brain was in shock! I was stuck in a moment of appreciation. Appreciation for his words. Appreciation for an answer. Appreciation for getting positive feelings back, if only for a moment.
So after the appointment I did what any reasonable girl who had just received life-changing news would do...I got a makeover! It was just at the Dior beauty counter at Kenwood but it felt FANTASTIC and I deserved it!
The bad news: Ian will be evaluated by the geneticist next Friday. Our primary care doctor diagnosed him with hypermobility and he's experiencing joint pain, skin rashes after being in the sun and he's already had 3 migraines this month (with loss of vision). I gave the geneticist a heads up about it. He already let me know that Ian would need to start physical therapy now to help avoid problems later, he'd also get evaluated by orthopedics because he has flat feet which is affecting his lower-back, and spine stability and may be contributing to the migraines. I think I may have to apply for Ian's SSDI too.
So here's what I'm looking at: life-long physical therapy for both of us (Ian at Children's, mine at CAST), rheumatology for both of us (Ian at Children's, mine at Norwood) MH therapy for both of us (different offices) management of Ian's Asperger's and Bipolar, orthopedics (possibly same doctor), migraine management for both of us (possibly same doctor), asthma management (same doctor), medication regimens for both of us, school catch up for Ian due to his appointments. LOTS and LOTS of medical appointments...going back to work???
After gathering information, the genetic counselor then meets with the geneticist for a couple of minutes prior to the doctor meeting with me. She gave him the "case history" and put him "up to speed". I could hear them speaking outside my door but I couldn't really make out much of the conversation. I started getting extremely anxious and I felt my heart drop. I couldn't answer the questions about my family history so I couldn't possibly have this, could I??? I had failed the test! This would be another dead end and I would go home with no answers...again.
The doctor came in the room and immediately put me at ease with his awkward geekiness and his huge smile. He reviewed with me what the genetic counselor had just explained to him (impressively accurate for just a 2 minute conversation!). He asked me to stretch a few joints. Then he showed me how my body was stretchy-bendy compared to his. WOW! This was something that I could do easily without gaving it a second thought, my surprise was that others COULD NOT bend that way. And here I thought I was such a wuss, I'M ELASTIGIRL!!! (Ironically, Mark does remind me of Mr. Incredible :)
The doctor then explained that to be diagnosed with Hypermobility, I needed to meet 5 out of 9 hypermobile joints: I had 8 out of 9. I didn't make the 9th because I couldn't put the flat of my palm (my fingers were flat on the floor) to the floor while bending over keeping my knees straight by just about .25 mm...I mean really!? Then he checked for additional hypermobile joints that are not part of the official diagnosis but cause symptoms nonetheless: jaw, knees, and fingers are hypermobile too. He also suspects my inner ear joints which cause frequent ringing in the ear and instability, and he doesn't doubt my spine disks slip in and out which is the popping I keep hearing. He also believes I have cervical instability which exaplains MIGRAINES!!! He added a referral to a EDS/migraine specialist to work on that. I would also have to drink Gatorade everyday because of POTS.
He went on to explain that once Hypermobility is diagnosed Ehlers-Diagnosed is officially diagnosed if the hypermobility is causing significant problems. He said "obviously in your case it is." UNDERSTATEMENT OF THE YEAR!!! With so many hypermobile joints he was surprised I've never dislocated anything and said I would have to wear a medical alert bracelet so special care would be taken in an emergency situation, "they may not know what EDS is but it will cause them to look it up in the book." LOL
However, the single most important statement that doctor said to me was, "day after day we get people like you come into our clinic having heard it all: lupus, arthritis, having surgeries that didn't help, intense pain, migraines, easy bruising, intestinal problems and its good to tell them that there is something that explains all of their symptoms. I bet you've also been told that it's all in your head, that you're just making it up, that its not that bad. The diagnosis doesn't change anything but its very much real. You also have to understand that the changes you're going to have to make are life-long."
I didn't know what I was feeling. I didn't know if I should cry, hug him, laugh....my brain was in shock! I was stuck in a moment of appreciation. Appreciation for his words. Appreciation for an answer. Appreciation for getting positive feelings back, if only for a moment.
So after the appointment I did what any reasonable girl who had just received life-changing news would do...I got a makeover! It was just at the Dior beauty counter at Kenwood but it felt FANTASTIC and I deserved it!
The bad news: Ian will be evaluated by the geneticist next Friday. Our primary care doctor diagnosed him with hypermobility and he's experiencing joint pain, skin rashes after being in the sun and he's already had 3 migraines this month (with loss of vision). I gave the geneticist a heads up about it. He already let me know that Ian would need to start physical therapy now to help avoid problems later, he'd also get evaluated by orthopedics because he has flat feet which is affecting his lower-back, and spine stability and may be contributing to the migraines. I think I may have to apply for Ian's SSDI too.
So here's what I'm looking at: life-long physical therapy for both of us (Ian at Children's, mine at CAST), rheumatology for both of us (Ian at Children's, mine at Norwood) MH therapy for both of us (different offices) management of Ian's Asperger's and Bipolar, orthopedics (possibly same doctor), migraine management for both of us (possibly same doctor), asthma management (same doctor), medication regimens for both of us, school catch up for Ian due to his appointments. LOTS and LOTS of medical appointments...going back to work???
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