I want to discuss the role of family and friends is, when an individual, a family member or a close friend, is facing a chronic and debilitating illness?
Being Hispanic, I have beliefs of what family should and should and behave like. I also have past experiences that affect, distort or guide what my views of what I feel and believe a nuclear family and extended family should and should not behave like. The first thing that I would expect from family is caring. Caring as in showing interest, attitude and support. Chronic illness will be around for a long time, it's here for life. It's not the flu, and it's not a transitory issue like a one time knee surgery. If someone in the family had cancer, everyone would be around with heartfelt wishes, wanting updates, bringing food, picking up the kids so mom (or dad) can rest, so parents can have some time to themselves, and so on. Believe me, I'm not making light on the risks and pain of cancer. But cancer is "visible", people know what it is and that it could be terminal. Maybe because EDS is an invisible illness, and the mortality rate depends on the level of care and what organs the illness attacks, family forgets. In the beginning months, they call and asks how you are doing, but then they're not interested anymore. This is taking too long and there really isn't going to be an end goal for treatment, it's also too complicated with so many doctor's involved in your care and you're not going to get any better; there are not going to be any "visible" results. So, there are no more calls for updates. There are no calls to ask about the pain. No calls about what the doctor said. No calls about new treatments you're trying. No more calls about the next surgery, before or after after all, you've had so many of them. YOU ARE TOO MUCH TROUBLE FOR THEM! You have your own family (nuclear family that is) let them worry about you. There is no "let me take the kids so you can rest", if there ever was that to begin with. However, unlike the family member that can so easily let it go, the chronic illness, degeneration, disability and pain is very much present in your life day-after-day-after-day, You can't choose to let it go and not be bothered with it. So you keep feeling lonelier and lonelier.
Let me give you an example: a family member recently texted me for something and I replied that I couldn't talk now I had to get a few things done before my surgery. My family member wrote back "OK" but never asked what the surgery was for or when it was scheduled to happen. NICE!
Fortunately my nuclear family is strong. My husband and I share similar beliefs and values and our family is what we like it to be. For example, we don't drink and don't believe in having the kids in environments where there are drinkers. We're also happy to stay home and share quiet evenings together, rather than attend parties. We also share the belief that, we have children so we are responsible for caring for them. Therefore, we don't often ask for childcare, from friends or family except on the rare occasion of an emergency; plus the kids are older and usually don't require it anyway. These are just our beliefs. We are in no way perfect, it's just who we are and you may disagree. However, dealing with a chronic illness is tiring and stressful, not only for me, but for the whole family. Time off would be a blessing, but because people are not interested in the invisible illness there is no break, no time off, no respite. There is no OFFER for time off because that would mean having to ask how you are, becoming involved with you, even for a moment. Not to mention, you have an invisible illness, so WHY do you need, no, why you deserve some time off ?
Another example: one of my family members becomes upset, or does not want to spend time with the kids, because of our values and the values we are raising the kids with, are not in agreement with the family member's values; this family member wishes to impose their values and discord ensues.
Regarding friends, first you have to differentiate between friends and acquaintances. Friends stick with you acquaintances just occasionally call if they happen to see you or think of you. Friends are not family, therefore they do not have an obligation to you. They have lives and problems of their own,and should be allowed some latitude regarding if and how often they check in, and they definitely do not needed to "babysit". If you are fortunate, some friends can even become as close or even closer than family. However, through this process or, voyage of EDS, I have lost many friends and had to "refile" them under acquaintances or colleagues. This is partially die to not having the energy to meet with them in bars and other social environments. I don't drink and it would cause to much pain afterward. In short, I would be a drag to them and it would cause too much pain for me. I don't "entertain" at home because clean up would also be too much hassle and exhausting. I also get the feeling they may think I'm not exercising the "power of positive optimism" enough, as if this alone would make a chronic and degenerative illness magically disappear. Sadly, for them, I subscribe to depressive realism (read more on this in the book First Rate Madness, excellent book) so that I am realistically prepared for every circumstance. So the calls and interest dwindles from those who no longer have time to be my friends, and now live the normal life of 30-somethings. We do have a couple that visit every few months and who we vacation with. They share some of our interests and are happy visiting our home; they also help with the clean-up! I've also had the pleasure of turning a colleague or acquaintance into a friend. The times we talk on the phone, email back and forth, or have visited together have been delightful. And that's all it takes. No babysitting needed! Just some interest without the need to take on my woes. Some human interaction, some humanity, some empathy and some warmth. Come over for a movie, some coffee, a game of scrabble, some gossip...that doesn't hurt and it is sooooo MEANINGFUL and VALUABLE!
I may sound a little negative, even angry. Maybe I am. It's hard to know there are people that need support but they are abandoned because they "don't look sick" or people don't want to get involved, or just the general feeling that "it's just taking too long" so interest drops off and people that are hurting are abandoned. That one's the best! What is too long? We have to keep living with this every day for the rest of our lives and so do our families. We are frustrated and so are our families. We get tired or going to doctors, trying new therapies, new medicines, more surgeries, new allergic reactions....so are our families. We would love to say we're sick of it and we're done with being sick too!
When I grew up in Puerto Rico, this was just something we did, we cared for one another. The neighbor and family we brought over the plate of rice and beans and took the kids over to their house so mom could eat a hot plate of food and take a shower in peace. Family would come over, even once a month, just to talk, and they would call. This is what I grew up, but it's no longer the norm, here or in Puerto Rico. This is a hard concept to accept.
Many times doctor's and therapist suggest, "use family as support, keep social ties", easier said than done, they don't always stick around.
Hoping and praying....
Monday, July 30, 2012
Saturday, July 28, 2012
On my first dislocation, communication with my Aspie son and...a better week?
I just dislocated, or partially dislocated, my first joint! At least the first that I am aware of. This morning I woke up with a sore wrist, my right one. I could feel it was sore before I actually got out bed, but thought I probably just stressed my hands the day before, so I didn't really think much of it. It would just be a wrist splint day. I sat up in bed and waited for the initial vertigo to pass and when I was ready put some pressure on my hands/wrists to get up. Then I heard it, POP! I still didn't think much of it, other than it sounded different than the usual pops and crackles in the morning as things fall into place. It also felt different from the usual initial movement of things falling into place. It felt forced, harder and somewhat grind-ier. Then I felt the pain.
The pain from a dislocation/subluxation varies and managing a dislocation is not like in the movies, you don't have to bang yourself against walls and you don't necessarily have to rush to the Emergency Department. It's all going to depend on the joint, and on the nerves, tendons and muscles affected; then, whether there is damage involving any of these, and whether the joint is worn down so that it doesn't cause much pain at all. I also have a threshold for pain tolerance so, in my favor, I can probably cope with it better than most. I also don't whether the joint went in or came out, so I'll have to monitor the situation for the next few weeks and see if it gets any worse. Even if the joint went in and readjusted itself, the pain could last for weeks because it causes inflammation to the surrounding, regardless of whether there is damage or not. So, if the joint had popped back into place and I went to see my Ortho, he would not be able to see anything on an x-ray and I would seem like crazy person (LOL). Actually, my Ortho knows and understand that EDS causes a lot of pain and "weird" things to happen. (Most doctor's than know about EDS are actually quite fascinated about us) He just makes sure that there is no permanent damage that needs to be attended to and "attempts" to find something that will offer some pain relief.
I said it was the first dislocation/subluxation that I was aware of because I suspect that this is what is happening when I get bursitis and muscle spasms in my shoulder. They usually happen after a day when I have been active and have stressed my arms and shoulders. And, I've always thought that I've been hurting myself through the night and wake up with the pain. It also lasts for weeks on end and suddenly goes away. So my thought is that my shoulder dislocates/subluxates through the night, particularly after a day when I have stressed my shoulder; and it's always the left one. That is definitely something that I need to bring up with the Ortho, he may be able to prescribe some sort of sling to use through the day or even at night to prevent this from happening so often...and it is soooo often!
Dislocations/Subluxations was a subject I had to bring up with my son. He has never had one to my knowledge either. He also presents a challenge on two fronts. First, with Asperger's communication is difficult for him. He doesn't always let me know he is feeling pain, so I have to stay in-tune with his body language and ask him what he's feeling. A few days ago I noticed he kept laying on his belly and pulling his arms back. He was having back pain but never told me! When I asked him if he needed Tylenol, he said no. I had to tell him that, yes he needed Tylenol because this was a painful condition and I could tell he was in a lot of pain. Within a half hour of taking the Tylenol he was back to being his cheery self and interacting with friends. I also ordered some rubber-soled flip-flops with arch support that would offer cushioning so that he could be outside and wear all-day in the house. I can't walk barefooted anymore because it causes incredible back-pain; flat shoes and flip-flops like the one's at Old Navy do not offer support either and end up causing pain. Trust me, THICK RUBBER SOLE WITH ARCH SUPPORT! http://www.amazon.com/gp/product/B000KJ0TQQ/ref=oh_details_o00_s00_i00
I also let my son know about that distinctive POP and the pain he may feel afterward. I let him know that is something he needs to let me know about immediately so we can determine if he needs to be taken to the hospital or just monitored, but he needs to use his words!
The second situation, is that he has Bipolar Disorder and occasionally has rages. This is a risk factor because he does not measure the intensity with which he throws things, hits the wall or hurts himself. It would only be after he calms down that we could evaluate any damage to his body and it could possibly be extreme, such as dislocation/subluxationg several joints. The best we can do in this case is: make sure his medications are managed adequately, use his safety plan, call emergency services if necessary, and make sure my son is aware of the risks he is taking and have him actively and pro-actively participate in self-management for both conditions.
In the last post I had written about my allergic reaction to the surgical tape. That also means that I won't be able to use the physio-tape anymore. I found something that might be a suitable replacement, a shoulders-back posture support. http://www.amazon.com/gp/product/B0019SW8DE/ref=oh_details_o01_s00_i00
I tried it the first day I got it just to make sure it fit, but haven't had a chance to properly use it. I won't lie it felt pretty uncomfortable, but I attribute that to already being uncomfortable because of the allergic reaction and the pain and fatigue from using my accessory muscles. I'm waiting to feel better to give it a proper try, then I'll give it my own full review; the Amazon reviews are pretty good.
I'm still on a pretty limited diet even 12 days post-surgery. I've tried to add new foods slowly but most of the time it's a disaster! I tried white rice yesterday, just plain rice, it ended up coming right back out; grapes almost did the same thing. I ended taking a Zofran and going to bed to let it pass. I also think I'm lactose intolerant and milk products like yogurt and ice cream also cause heartburn (I miss yogurt). So I'm still sticking to Jell-o, fruit cocktail, frozen ices, apple juice...Today I tried some frosted shredded wheat, just a few, and I let them completely dissolve in Lactose-free milk. My son uses Lactose-free milk because it causes an allergic reaction that turns into asthma, so we had it in the house. The frosted shredded wheat has been okay. I'm so happy! I loooove frosted shredded wheat! It has the most fiber of any cereal (more that Fiber One, Granola, Kashi, Honey Bunches of Oats, and Chex) and less sugar.
On that note, through the Ehlers-Danlos National Foundation I learned about something called idiopathic anaphylaxis and mast cell response http://www.ncbi.nlm.nih.gov/pubmed/17493503
which has been linked to EDS. I have to read more on it, but it may explain why my son and I have all of these allergic reactions!
Well, all-in-all I've had a pretty miserable week. I do have the Olympics to keep me entertained, I'm particularly interested in swimming and gymnastics, sports I participated in but EDS took away from me, even as a child when we didn't know what EDS was. They're absolutely beautiful sports which demonstrate the beautiful and amazing, side of hypermobility as opposed to Ehlers-Danlos which is hypermobility with pain. I also have the Opera to look forward to tonight, I'll be watching La Traviata! I'll write a review that :) Anyway, tomorrow is Sunday and a new week begins, a chance to start fresh.
In the meantime...
The pain from a dislocation/subluxation varies and managing a dislocation is not like in the movies, you don't have to bang yourself against walls and you don't necessarily have to rush to the Emergency Department. It's all going to depend on the joint, and on the nerves, tendons and muscles affected; then, whether there is damage involving any of these, and whether the joint is worn down so that it doesn't cause much pain at all. I also have a threshold for pain tolerance so, in my favor, I can probably cope with it better than most. I also don't whether the joint went in or came out, so I'll have to monitor the situation for the next few weeks and see if it gets any worse. Even if the joint went in and readjusted itself, the pain could last for weeks because it causes inflammation to the surrounding, regardless of whether there is damage or not. So, if the joint had popped back into place and I went to see my Ortho, he would not be able to see anything on an x-ray and I would seem like crazy person (LOL). Actually, my Ortho knows and understand that EDS causes a lot of pain and "weird" things to happen. (Most doctor's than know about EDS are actually quite fascinated about us) He just makes sure that there is no permanent damage that needs to be attended to and "attempts" to find something that will offer some pain relief.
I said it was the first dislocation/subluxation that I was aware of because I suspect that this is what is happening when I get bursitis and muscle spasms in my shoulder. They usually happen after a day when I have been active and have stressed my arms and shoulders. And, I've always thought that I've been hurting myself through the night and wake up with the pain. It also lasts for weeks on end and suddenly goes away. So my thought is that my shoulder dislocates/subluxates through the night, particularly after a day when I have stressed my shoulder; and it's always the left one. That is definitely something that I need to bring up with the Ortho, he may be able to prescribe some sort of sling to use through the day or even at night to prevent this from happening so often...and it is soooo often!
Dislocations/Subluxations was a subject I had to bring up with my son. He has never had one to my knowledge either. He also presents a challenge on two fronts. First, with Asperger's communication is difficult for him. He doesn't always let me know he is feeling pain, so I have to stay in-tune with his body language and ask him what he's feeling. A few days ago I noticed he kept laying on his belly and pulling his arms back. He was having back pain but never told me! When I asked him if he needed Tylenol, he said no. I had to tell him that, yes he needed Tylenol because this was a painful condition and I could tell he was in a lot of pain. Within a half hour of taking the Tylenol he was back to being his cheery self and interacting with friends. I also ordered some rubber-soled flip-flops with arch support that would offer cushioning so that he could be outside and wear all-day in the house. I can't walk barefooted anymore because it causes incredible back-pain; flat shoes and flip-flops like the one's at Old Navy do not offer support either and end up causing pain. Trust me, THICK RUBBER SOLE WITH ARCH SUPPORT! http://www.amazon.com/gp/product/B000KJ0TQQ/ref=oh_details_o00_s00_i00
I also let my son know about that distinctive POP and the pain he may feel afterward. I let him know that is something he needs to let me know about immediately so we can determine if he needs to be taken to the hospital or just monitored, but he needs to use his words!
The second situation, is that he has Bipolar Disorder and occasionally has rages. This is a risk factor because he does not measure the intensity with which he throws things, hits the wall or hurts himself. It would only be after he calms down that we could evaluate any damage to his body and it could possibly be extreme, such as dislocation/subluxationg several joints. The best we can do in this case is: make sure his medications are managed adequately, use his safety plan, call emergency services if necessary, and make sure my son is aware of the risks he is taking and have him actively and pro-actively participate in self-management for both conditions.
In the last post I had written about my allergic reaction to the surgical tape. That also means that I won't be able to use the physio-tape anymore. I found something that might be a suitable replacement, a shoulders-back posture support. http://www.amazon.com/gp/product/B0019SW8DE/ref=oh_details_o01_s00_i00
I tried it the first day I got it just to make sure it fit, but haven't had a chance to properly use it. I won't lie it felt pretty uncomfortable, but I attribute that to already being uncomfortable because of the allergic reaction and the pain and fatigue from using my accessory muscles. I'm waiting to feel better to give it a proper try, then I'll give it my own full review; the Amazon reviews are pretty good.
I'm still on a pretty limited diet even 12 days post-surgery. I've tried to add new foods slowly but most of the time it's a disaster! I tried white rice yesterday, just plain rice, it ended up coming right back out; grapes almost did the same thing. I ended taking a Zofran and going to bed to let it pass. I also think I'm lactose intolerant and milk products like yogurt and ice cream also cause heartburn (I miss yogurt). So I'm still sticking to Jell-o, fruit cocktail, frozen ices, apple juice...Today I tried some frosted shredded wheat, just a few, and I let them completely dissolve in Lactose-free milk. My son uses Lactose-free milk because it causes an allergic reaction that turns into asthma, so we had it in the house. The frosted shredded wheat has been okay. I'm so happy! I loooove frosted shredded wheat! It has the most fiber of any cereal (more that Fiber One, Granola, Kashi, Honey Bunches of Oats, and Chex) and less sugar.
On that note, through the Ehlers-Danlos National Foundation I learned about something called idiopathic anaphylaxis and mast cell response http://www.ncbi.nlm.nih.gov/pubmed/17493503
which has been linked to EDS. I have to read more on it, but it may explain why my son and I have all of these allergic reactions!
Well, all-in-all I've had a pretty miserable week. I do have the Olympics to keep me entertained, I'm particularly interested in swimming and gymnastics, sports I participated in but EDS took away from me, even as a child when we didn't know what EDS was. They're absolutely beautiful sports which demonstrate the beautiful and amazing, side of hypermobility as opposed to Ehlers-Danlos which is hypermobility with pain. I also have the Opera to look forward to tonight, I'll be watching La Traviata! I'll write a review that :) Anyway, tomorrow is Sunday and a new week begins, a chance to start fresh.
In the meantime...
Thursday, July 26, 2012
Post-surgery Complication
I've been away for a little while because I've had a complication with the surgery. Nothing terribly serious but still very uncomfortable and worrysome.
About 3 days ago, 8 days post-surgery, my abdominal wall, or to put it plainly, my stomach started to feel itchy. Very, very itchy. So itchy I couldn't stand it! The only way I could get enough relief in order to sleep was laying sideways but slightly on top of the wounds that were the most itchy.
However, the next morning, day 9, the surgical tape had fallen off 2 the wounds. I panicked! One was still slightly open, the other was closed, but the surrounding tissue on both looked red and irritated and it was hot. I decided I was going to wait before calling the doctor's office and try to care of the wounds myself. I figured if I called they would just tell me to go to the hospital and I wasn't ready to go back so soon. So, knowing that I'm quite good at taking care of wounds, I cleaned them with alcohol and applied Neosporin 3 times a day. I attempted to cover them with band-aids to protect them, but that just irritated them more so I left them open to air out. As the day progressed I found that I was compensating with my upper chest, shoulders and neck to keep my abdominal wall extended and prevent my stomach folding because it hurt. Because of compensating, by the end of the day the pain in my neck and shoulders was unbearable. I was exhausted. I went to bed with an icepack and was asleep by 9pm!
*Note: When I say the wound was slightly open, I mean slightly, it was not a gash, nor a puncture wound. However, in Ehlers--Danlos we run the risk of dehiscence, were surgical wounds split open, not just immediately after surgery, but even years after surgery. Because this wound was even slightly open, there was a legitimate risk of this type of complication.
On day 10, at exactly 8:30 am I called the surgeon's office. The receptionist too a message and said the nurse would call me back. At 1pm the nurse had not called me back. I decided that it was time to take action. I called my primary care physician, who first recognized and diagnosed me with the Ehlers-Danlos and asked him to evaluate the incisions. Ironically, he said the wound itself was healing well, however, I was having an allergic reaction to the surgical tape! WHAT????? He showed me the perfectly square area surrounding the incision that was irritated, that's why the tape fell of! He told me not to use alcohol on it anymore which might irritate it anymore, just soap water, and Neosporin no more than twice a day, just to keep it moisturized and avoid the dehiscence risk and allow it to be aired out.
I spoke with the surgeon's nurse around 3:30 pm and let her know about my conversation with my PCP. She mostly agreed with it. I told her my biggest concern was dehiscence related with Ehlers-Danlos. She understood and also asked "had you been treated with the Steri-strips before?" I said no, and explained that for the spine fusion glue had been used. She said she would add the new allergy to the Steri-strips on my file which updates the hospital too (all of UC), and said I should let others in the future know that I have an allergy to the surgery tape. She would also put me on theNurse Practioner's client list for Monday as "to call" so that she would follow up with me because I was a high-risk patient; but if the wound opened during the weekend, I should call their office number and select the option to contact the doctor for a medical emergency.
Right now I'm in a lot of pain, but not becuase of the surgery, it's more of an exhausted pain (new pain scale definition) I can feel it in my shoulder, neck, chest and lower back...so everywhere other than my stomach :) I'm having to use all of these accesory muscles and it's wearing me down. I'm generally all-around-downright-miserable and that's making me miserable. As for my mood, I'm pretty crabby and somewhere between wanting to be left alone to die (not literally) and not wanting to be left alone becuase I would think too much about my pain. As for my family...when mamma ain't happy ain't nobody happy!
About 3 days ago, 8 days post-surgery, my abdominal wall, or to put it plainly, my stomach started to feel itchy. Very, very itchy. So itchy I couldn't stand it! The only way I could get enough relief in order to sleep was laying sideways but slightly on top of the wounds that were the most itchy.
However, the next morning, day 9, the surgical tape had fallen off 2 the wounds. I panicked! One was still slightly open, the other was closed, but the surrounding tissue on both looked red and irritated and it was hot. I decided I was going to wait before calling the doctor's office and try to care of the wounds myself. I figured if I called they would just tell me to go to the hospital and I wasn't ready to go back so soon. So, knowing that I'm quite good at taking care of wounds, I cleaned them with alcohol and applied Neosporin 3 times a day. I attempted to cover them with band-aids to protect them, but that just irritated them more so I left them open to air out. As the day progressed I found that I was compensating with my upper chest, shoulders and neck to keep my abdominal wall extended and prevent my stomach folding because it hurt. Because of compensating, by the end of the day the pain in my neck and shoulders was unbearable. I was exhausted. I went to bed with an icepack and was asleep by 9pm!
*Note: When I say the wound was slightly open, I mean slightly, it was not a gash, nor a puncture wound. However, in Ehlers--Danlos we run the risk of dehiscence, were surgical wounds split open, not just immediately after surgery, but even years after surgery. Because this wound was even slightly open, there was a legitimate risk of this type of complication.
On day 10, at exactly 8:30 am I called the surgeon's office. The receptionist too a message and said the nurse would call me back. At 1pm the nurse had not called me back. I decided that it was time to take action. I called my primary care physician, who first recognized and diagnosed me with the Ehlers-Danlos and asked him to evaluate the incisions. Ironically, he said the wound itself was healing well, however, I was having an allergic reaction to the surgical tape! WHAT????? He showed me the perfectly square area surrounding the incision that was irritated, that's why the tape fell of! He told me not to use alcohol on it anymore which might irritate it anymore, just soap water, and Neosporin no more than twice a day, just to keep it moisturized and avoid the dehiscence risk and allow it to be aired out.
I spoke with the surgeon's nurse around 3:30 pm and let her know about my conversation with my PCP. She mostly agreed with it. I told her my biggest concern was dehiscence related with Ehlers-Danlos. She understood and also asked "had you been treated with the Steri-strips before?" I said no, and explained that for the spine fusion glue had been used. She said she would add the new allergy to the Steri-strips on my file which updates the hospital too (all of UC), and said I should let others in the future know that I have an allergy to the surgery tape. She would also put me on theNurse Practioner's client list for Monday as "to call" so that she would follow up with me because I was a high-risk patient; but if the wound opened during the weekend, I should call their office number and select the option to contact the doctor for a medical emergency.
Right now I'm in a lot of pain, but not becuase of the surgery, it's more of an exhausted pain (new pain scale definition) I can feel it in my shoulder, neck, chest and lower back...so everywhere other than my stomach :) I'm having to use all of these accesory muscles and it's wearing me down. I'm generally all-around-downright-miserable and that's making me miserable. As for my mood, I'm pretty crabby and somewhere between wanting to be left alone to die (not literally) and not wanting to be left alone becuase I would think too much about my pain. As for my family...when mamma ain't happy ain't nobody happy!
Monday, July 23, 2012
Valuable list of Specialist in Ohio
I've been thinking about all of the medical professionals involved in my care. In fact, the last time I went to the Pulmo he said "you have a lot of people" referring to this. I responded "I think the only doctors I don't have are a cardiologist and a podiatrist", only half joking. He offered to refer me to some, also only half joking. But,with EDS as one thing gets "fixed" another breaks down. So, for anyone living in Cincinnati or surrounding areas, I'm adding the names of some medical professionals here, with whom I feel extremely comfortable. I know how valuable word of mouth is, but this is especially true among the EDS community. Doctors don't advertise they treat EDS and it's hard, impossible to know if they have good bedside manners, if they will include you in treatment planning, if there is a long wait in there office, if there is a long wait for an appointment (when you have an issue now!). I didn'[t know who Dr. Tinkle was until I got referred for EDS and there was a 6 month wait for an evaluation, but Dr. Nielson was available in a week and he turned out to be excellent! Knowing the people on this list are knowledgeable and sensitive to what we experience day-by-day, even though they can't begin to imagine what that truly is, and knowing they can take care of our special needs is extremely valuable indeed! So here is my list:
Primary Care: Michael Jones, CNP. Hamilton, OH
Don't be put off with him being a Certified Nurse Practitioner, he is well versed in EDS because his sister has it. He can offer referrals and do preliminary testing so you can have results in hand by your first appointment.
Rheumatology: Dr. Louis Flashpohler, Norwood, OH, and Christ Hospital, Cincinnati, OH. Listens carefully and ponders information. Likes to think about treatment carefully before using unnecessary meds. Keeps appointments tight (every 2 months) to avoid deterioration.
Center for Advanced Spine Technologies for Orthopedics, Spine, Pain Management: Blue Ash, OH and Erlanger, KY.
Dr. Nael Shanti, Surgeon. Wonderful, sweetheart of a man! So, so, sooooo patient!
Dr. Abubakar Durrani, Surgeon. Specializes in precision spine surgery. I haven't been seen by him but if C3 herniates and I stay with CAST for treatment, he would be the one working at that level. Just know that there will be a long wait to see him, and a long wait in the waiting room. People travel from all over the US to see him; he's that good.
Dr. Zeeshan Tayeb, Pain Management. Great sense of humor, puts you at ease while he's sticking needles in you, LOL! Remembers who you are and what he did to you (what needles he stuck in you), LOL. Wonderful!
Gastroenterology: Dr. Stephen Kucera, Cincinnati, OH and West Chester, OH. Knows EDS and how it affects the gastro system. Funny and likes to talk things out, but goes straight to the point.
Surgery: Dr. Thomas Husted, West Chester, OH. Keeps you well informed, good sense of humor puts you at ease, very conservative in favor of the patient, especially in EDS.
ENT: Dr. Alfred Sassler. Knows issues that occur in EDS such as acid reflux, TMJ, and inner ear hypermobility. May not have the bedside manners though.
Psychiatry: Dr. Robert Simms, Fairfield, OH. Conservative in treatment, doesn't like to over medicate. Passionate in wanting to help the patient so he listens and takes input about where the patients want to go with treatment.
Counseling: Tracy Mert, Charles Roberts, Diane Zeiger.
Migraines: Dr. Lisa Mannix. Does not accept any insurance. Doesn't specialize in EDS. Can do Botox and nerve blocks.
Migraines and Dysautonomia: Dr. Vincent Martin. Specialized in EDS, even co-wrote article with Dr. Tinkle about occurrence of migraines in EDS. Treats underlying dehydration and dysautonomia which co-occur with EDS and contribute to migraine and auras.
Geneticist: Dr. Derek Nielson from Dr. Tinkle's Office. VERY through in explaining what EDS and co-occurring conditions. Can get in to see him in about 2 weeks, rather than waiting 6 months to see Dr. Tinkle. Dr. Tinkle is leaving Cincinnati Children's and going to Chicago so he Dr. Nielson is a good option. Will offer all referrals and set goals of treatment, will make appointment for 6 months to see progress/degeneration.
Physical Therapy Specializing in Hypermobility: Kathy Loveless, South Lebanon, OH. Kathy is the one that uses the physio-tape I mentioned in an earlier post. Focuses on strengthening core with Pilates type movement and learning diaphragmatic breathing. Very knowledgeable in EDS and PT.
Pulmonologist: Dr. Richard Sternberg, Hamilton, OH. Knowledgeable in EDS and co-occurring respiratory conditions, such as collapsed bronchioles/alveoli, or reflux-disease that may be imitating a respiratory condition. Believed me when I said that I get flu shot and get the flu!
Some doctors that I have not had positive experiences with are:
Rheumatology: Dr. Surabhi Agarwal, Christ Hospital, Cincinnati, OH. Diagnosed as Fibromyalgia, Depression and anxiety. After reading her notes, she continuously said that I was anxious at her visits! I don't have Fibro trigger points and meds for Fibro have offered no help...it's NOT Fibro!
Rheumatology: Dr. Sri Koneru, Group Associates, Various Offices throughout OH. Offered Flexeril for sleep, when I let her know I still hurt and couldn't sleep, she discontinued the Flexeril and didn't pursue any other options.
Cleveland Clinic: Rheumatology and Migraine clinics were not of much help and got nowhere near my diagnosis. They suggested I get off ALL of my meds and never take anything again because "it COULD POSSIBLY cause a headache" while ignoring pain and osteoarthritis degeneration of the spine!
Gastroenterology: Dr. Pradeep Bekal, took 3 phone calls while I was on examining table, then went on to explain that he had to take the phone calls because he was really important! When I called for refill of Amitiza to treat gastroparesis (colonic inertia) they sent samples through which took 4 days! No bowel movement and pain for 4 days and then wait for the med to work!
General Surgery: Dr. Louis Thibideaux, he was fine with good bedside manner, however there was always a 1 hour waiting time in his office even with and appointment. Not someone to go back to.
As of now, I'm still looking for a gynecologist that is knowledgeable in EDS. The GYN I have now is okay but knows nothing of EDS. The fellows and residents he was training had at least heard of it but he hadn't! PCOS is linked to EDS and can cause referred back pain. I've also been having too many issues even having the Mirena so it's time for a second opinion but only with someone who is going to be of help, not just anyone. So I added a post-it note to my agenda to remind myself to ask Dr. Martin and Dr. Flashpohler for referrals. I'll then look up the doctors they offer and make my choice. We EDS'ers HAVE to be picky!!!
All joking aside, I'm fortunate that I haven't needed a cardiologist, endocrinologist, hematologist, dermatologist, neurosurgeon, oncologist, nephrologist, podiatrist, and I'm sure many other ~ists and sub~ists. Let's hope I NEVER do!!!
Let's see what the Universe has in store for me today!
Primary Care: Michael Jones, CNP. Hamilton, OH
Don't be put off with him being a Certified Nurse Practitioner, he is well versed in EDS because his sister has it. He can offer referrals and do preliminary testing so you can have results in hand by your first appointment.
Rheumatology: Dr. Louis Flashpohler, Norwood, OH, and Christ Hospital, Cincinnati, OH. Listens carefully and ponders information. Likes to think about treatment carefully before using unnecessary meds. Keeps appointments tight (every 2 months) to avoid deterioration.
Center for Advanced Spine Technologies for Orthopedics, Spine, Pain Management: Blue Ash, OH and Erlanger, KY.
Dr. Nael Shanti, Surgeon. Wonderful, sweetheart of a man! So, so, sooooo patient!
Dr. Abubakar Durrani, Surgeon. Specializes in precision spine surgery. I haven't been seen by him but if C3 herniates and I stay with CAST for treatment, he would be the one working at that level. Just know that there will be a long wait to see him, and a long wait in the waiting room. People travel from all over the US to see him; he's that good.
Dr. Zeeshan Tayeb, Pain Management. Great sense of humor, puts you at ease while he's sticking needles in you, LOL! Remembers who you are and what he did to you (what needles he stuck in you), LOL. Wonderful!
Gastroenterology: Dr. Stephen Kucera, Cincinnati, OH and West Chester, OH. Knows EDS and how it affects the gastro system. Funny and likes to talk things out, but goes straight to the point.
Surgery: Dr. Thomas Husted, West Chester, OH. Keeps you well informed, good sense of humor puts you at ease, very conservative in favor of the patient, especially in EDS.
ENT: Dr. Alfred Sassler. Knows issues that occur in EDS such as acid reflux, TMJ, and inner ear hypermobility. May not have the bedside manners though.
Psychiatry: Dr. Robert Simms, Fairfield, OH. Conservative in treatment, doesn't like to over medicate. Passionate in wanting to help the patient so he listens and takes input about where the patients want to go with treatment.
Counseling: Tracy Mert, Charles Roberts, Diane Zeiger.
Migraines: Dr. Lisa Mannix. Does not accept any insurance. Doesn't specialize in EDS. Can do Botox and nerve blocks.
Migraines and Dysautonomia: Dr. Vincent Martin. Specialized in EDS, even co-wrote article with Dr. Tinkle about occurrence of migraines in EDS. Treats underlying dehydration and dysautonomia which co-occur with EDS and contribute to migraine and auras.
Geneticist: Dr. Derek Nielson from Dr. Tinkle's Office. VERY through in explaining what EDS and co-occurring conditions. Can get in to see him in about 2 weeks, rather than waiting 6 months to see Dr. Tinkle. Dr. Tinkle is leaving Cincinnati Children's and going to Chicago so he Dr. Nielson is a good option. Will offer all referrals and set goals of treatment, will make appointment for 6 months to see progress/degeneration.
Physical Therapy Specializing in Hypermobility: Kathy Loveless, South Lebanon, OH. Kathy is the one that uses the physio-tape I mentioned in an earlier post. Focuses on strengthening core with Pilates type movement and learning diaphragmatic breathing. Very knowledgeable in EDS and PT.
Pulmonologist: Dr. Richard Sternberg, Hamilton, OH. Knowledgeable in EDS and co-occurring respiratory conditions, such as collapsed bronchioles/alveoli, or reflux-disease that may be imitating a respiratory condition. Believed me when I said that I get flu shot and get the flu!
Some doctors that I have not had positive experiences with are:
Rheumatology: Dr. Surabhi Agarwal, Christ Hospital, Cincinnati, OH. Diagnosed as Fibromyalgia, Depression and anxiety. After reading her notes, she continuously said that I was anxious at her visits! I don't have Fibro trigger points and meds for Fibro have offered no help...it's NOT Fibro!
Rheumatology: Dr. Sri Koneru, Group Associates, Various Offices throughout OH. Offered Flexeril for sleep, when I let her know I still hurt and couldn't sleep, she discontinued the Flexeril and didn't pursue any other options.
Cleveland Clinic: Rheumatology and Migraine clinics were not of much help and got nowhere near my diagnosis. They suggested I get off ALL of my meds and never take anything again because "it COULD POSSIBLY cause a headache" while ignoring pain and osteoarthritis degeneration of the spine!
Gastroenterology: Dr. Pradeep Bekal, took 3 phone calls while I was on examining table, then went on to explain that he had to take the phone calls because he was really important! When I called for refill of Amitiza to treat gastroparesis (colonic inertia) they sent samples through which took 4 days! No bowel movement and pain for 4 days and then wait for the med to work!
General Surgery: Dr. Louis Thibideaux, he was fine with good bedside manner, however there was always a 1 hour waiting time in his office even with and appointment. Not someone to go back to.
As of now, I'm still looking for a gynecologist that is knowledgeable in EDS. The GYN I have now is okay but knows nothing of EDS. The fellows and residents he was training had at least heard of it but he hadn't! PCOS is linked to EDS and can cause referred back pain. I've also been having too many issues even having the Mirena so it's time for a second opinion but only with someone who is going to be of help, not just anyone. So I added a post-it note to my agenda to remind myself to ask Dr. Martin and Dr. Flashpohler for referrals. I'll then look up the doctors they offer and make my choice. We EDS'ers HAVE to be picky!!!
All joking aside, I'm fortunate that I haven't needed a cardiologist, endocrinologist, hematologist, dermatologist, neurosurgeon, oncologist, nephrologist, podiatrist, and I'm sure many other ~ists and sub~ists. Let's hope I NEVER do!!!
Let's see what the Universe has in store for me today!
Sunday, July 22, 2012
What happens when you forget self-care
I'm still relatively pain free post-surgery, but I tested my limits yesterday and paid for it. I was feeling a little "lazy" because I had not experienced any pain and, frankly, couldn't stand seeing dishes piling-up anymore so I tried loading the dishwasher. How hard could that be right? VERY! It was only about half a load of light things like cups and silverware, but the bending motion, even while being very careful, was too much. So I ended up with some pain and was even worried that I might have hurt or undone something. It wasn't terrible pain but I couldn't sit or bend for the rest of the night and even eating was uncomfortable and caused GI upset.
The vein (literally the vein, not the skin) where my IV line was in is now scarred. I kept telling the nurse it was hurting, but they were unsure of my release day and expected to take it out "soon". I am also notorious for being difficult to get a line in because my veins are deceiving: I have the EDS transluscent skin, but the thin, rubbery veins that move around. The nurses kept flushing the line in an attempt to keep the one I had open. Now it's scarred and probably will not work in the future....such is the life with EDS.
The dizziness that I was experiencing when standing has progressed to vertigo all of the time, even while sitting and laying down. There are a few possibilities that are linked to EDS. None are life-threatening, however for an EDS'er vertigo, dizziness and low blood pressure due to POTS, can be dangerous because they create a fall risk and the possibility of dislocations, subluxations, broken bones, and herniated and slipped disks...just to name a few. Some of the possibilities for the vertigo are:
1. Hypermobility in the bones and joints connected to the ear. No treatment.
2. POTS related. Treat low blood pressure. No treatment for vertigo.
2. Benign Paroxysmal Position Vertigo (BPPV) vertigo occurs when fluid in ear moves as head moves, the brain misinterprets the signal from the ear and attempts to maintain balance creating the vertigo. It is benign so there are no risk factors. No treatment. Begins spontaneously or after trauma, ear infection. No treatment.
3. Meniere's Disease. Crystal form in the ear and get stuck in the ear canal causing imbalance when the head moves. Causes uncontrollable vertigo, nausea and hearing loss. There is a technique that assists in moving the crystals through the ear canal, but surgery may be needed.
I don't see any of my doc's until the week of August 20th...after vacation (I hope I don't fall off the boat!) I could try to move an appointment up and have my son to drive me, since I can't drive for the next few weeks and definitely not with vertigo. However, let's not forget about the dishwasher incident! I'd be in such discomfort through the doc visit and testing, that I think I'll just wait it out until my scheduled appointment.
Thinking about having my son drive me got me to thinking...my oldest son is entering his Senior year, o I only have him to chauffeur me around for 1 more year. How am I going to get around after that?! Believe me, he's not stuck in the house or having to cancel with friend's because of me: he often stays at his friend's house the entire weekend, has band practice once a week and video game night with the band members once a week, and when school starts he'll have football Friday's at his HS. He has a pretty busy social calendar! On my part, I try to stay as mobile as possible but there are days the vertigo is just too much, or the migraines, or just the pain in general. Thinking ahead about this is not selfishness. It is a genuine need that I will need to have fulfilled. Granted, it is a year away and a lot of things can happen, but being proactive is better than being reactive. and allows for better and more options.
Instead of thinking lazy, what I should have done was reminded myself that I had major surgery 5 days ago! What I should have done is reminded myself that an EDS'er takes twice a long as a "normal" person to heal from surgery, so I should have patience with myself. What I should have done is thanked my body for all it HAS done, for putting forth the extra effort and energy than a non-EDS body does every single day. What I should have done is thank my body for getting me through 3 surgeries in 8 months! What I should have done is reminded myself that experiencing the healing process is self-care.
In the meantime, waiting in faith for the universe to lead the way...
The vein (literally the vein, not the skin) where my IV line was in is now scarred. I kept telling the nurse it was hurting, but they were unsure of my release day and expected to take it out "soon". I am also notorious for being difficult to get a line in because my veins are deceiving: I have the EDS transluscent skin, but the thin, rubbery veins that move around. The nurses kept flushing the line in an attempt to keep the one I had open. Now it's scarred and probably will not work in the future....such is the life with EDS.
The dizziness that I was experiencing when standing has progressed to vertigo all of the time, even while sitting and laying down. There are a few possibilities that are linked to EDS. None are life-threatening, however for an EDS'er vertigo, dizziness and low blood pressure due to POTS, can be dangerous because they create a fall risk and the possibility of dislocations, subluxations, broken bones, and herniated and slipped disks...just to name a few. Some of the possibilities for the vertigo are:
1. Hypermobility in the bones and joints connected to the ear. No treatment.
2. POTS related. Treat low blood pressure. No treatment for vertigo.
2. Benign Paroxysmal Position Vertigo (BPPV) vertigo occurs when fluid in ear moves as head moves, the brain misinterprets the signal from the ear and attempts to maintain balance creating the vertigo. It is benign so there are no risk factors. No treatment. Begins spontaneously or after trauma, ear infection. No treatment.
3. Meniere's Disease. Crystal form in the ear and get stuck in the ear canal causing imbalance when the head moves. Causes uncontrollable vertigo, nausea and hearing loss. There is a technique that assists in moving the crystals through the ear canal, but surgery may be needed.
I don't see any of my doc's until the week of August 20th...after vacation (I hope I don't fall off the boat!) I could try to move an appointment up and have my son to drive me, since I can't drive for the next few weeks and definitely not with vertigo. However, let's not forget about the dishwasher incident! I'd be in such discomfort through the doc visit and testing, that I think I'll just wait it out until my scheduled appointment.
Thinking about having my son drive me got me to thinking...my oldest son is entering his Senior year, o I only have him to chauffeur me around for 1 more year. How am I going to get around after that?! Believe me, he's not stuck in the house or having to cancel with friend's because of me: he often stays at his friend's house the entire weekend, has band practice once a week and video game night with the band members once a week, and when school starts he'll have football Friday's at his HS. He has a pretty busy social calendar! On my part, I try to stay as mobile as possible but there are days the vertigo is just too much, or the migraines, or just the pain in general. Thinking ahead about this is not selfishness. It is a genuine need that I will need to have fulfilled. Granted, it is a year away and a lot of things can happen, but being proactive is better than being reactive. and allows for better and more options.
Instead of thinking lazy, what I should have done was reminded myself that I had major surgery 5 days ago! What I should have done is reminded myself that an EDS'er takes twice a long as a "normal" person to heal from surgery, so I should have patience with myself. What I should have done is thanked my body for all it HAS done, for putting forth the extra effort and energy than a non-EDS body does every single day. What I should have done is thank my body for getting me through 3 surgeries in 8 months! What I should have done is reminded myself that experiencing the healing process is self-care.
In the meantime, waiting in faith for the universe to lead the way...
Saturday, July 21, 2012
Post-Niessen Fundoplication (acid reflux surgery)
Well, I'm back after having had my Niessen Fundoplication (fancy name for acid reflux surgery) and hiatal hernia repair. The surgery went smoothly and quick. And I will say, HYPNOSIS WORKED! I was in absolutely NO PAIN post-surgery and left the hospital with NO PAIN MEDS! I only felt discomfort from anesthesia and gas which made it hard to breathe the first day and reason I used any pain medication. I used so little of it, the nurses constantly kept reminding me "You can use it every 6 minutes". By the time I left the hospital 2 days after surgery I had used less than 1mg of Dilaudid!!!
Post-surgery wasn't quite as smooth, there were a few bumps in the road but nothing too alarming. First, I began developing the initial signs of an allergic reaction to the Dilaudid. Some pain meds can cause some flushing of the skin, I looked like a lobster and irradiated heat! I let the nurse know and said said they had already left a standing order for Benadryl knowing my past history and it was up to me whether I wanted it by mouth or IV...IV please! We started at 12.5, standard initial dose for IV but I could get up to 50mg, I just needed to ask when I felt I needed it. I felt powerful! The doc's were listening to me and trusting I could manage my condition! (that or they were terrified, result is the same) I waited a couple of hours with no change so I asked for a second IV dose; the flushing and heat started to dissipate. Even after another Dilaudid dose, the flushing did not return. Phew!
Initially, I was told this would be outpatient surgery, however, the day before surgery I was notified I would be staying the night. I think the doc decided to be cautious precisely because of my history with med allergies...and well, just because of my history. However, the day after surgery I was still experiencing some nausea and I was held an additional night. He explained that after a Niessen Fundoplication and after anesthesia, its not unusual to experience nausea and there is a risk that vomiting might develop causing the surgery to become undone. I would need to be given Zofran to manage the nausea until it passed. I'm familiar with Zofran, it's what I use when I have an intense migraine that is accompanied by nausea; it's also what is used in cancer patients to control nausea related to chemotherapy. Zofran was of no help. I asked for Phenergan (the most wonderful pharmacological invention along with Benadryl!) but it never came...don't know what happened there....so I just used Dilaudid to fall asleep and let the nausea pass.
I'm able to ambulate around the house freely with no pain, but I don't press my luck by standing for too long and definitely don't lift heavy objects. I've graduated from a clear diet consisting of broth, frozen ices and jello, to a soft diet that includes yogurt and a little bit of milk. I won't be able to have fresh fruit for a while, and I may not be able to have seeds forever because they can become stuck, maybe meat too...it's going to be a lot of trial and error.
Post-surgery wasn't quite as smooth, there were a few bumps in the road but nothing too alarming. First, I began developing the initial signs of an allergic reaction to the Dilaudid. Some pain meds can cause some flushing of the skin, I looked like a lobster and irradiated heat! I let the nurse know and said said they had already left a standing order for Benadryl knowing my past history and it was up to me whether I wanted it by mouth or IV...IV please! We started at 12.5, standard initial dose for IV but I could get up to 50mg, I just needed to ask when I felt I needed it. I felt powerful! The doc's were listening to me and trusting I could manage my condition! (that or they were terrified, result is the same) I waited a couple of hours with no change so I asked for a second IV dose; the flushing and heat started to dissipate. Even after another Dilaudid dose, the flushing did not return. Phew!
Initially, I was told this would be outpatient surgery, however, the day before surgery I was notified I would be staying the night. I think the doc decided to be cautious precisely because of my history with med allergies...and well, just because of my history. However, the day after surgery I was still experiencing some nausea and I was held an additional night. He explained that after a Niessen Fundoplication and after anesthesia, its not unusual to experience nausea and there is a risk that vomiting might develop causing the surgery to become undone. I would need to be given Zofran to manage the nausea until it passed. I'm familiar with Zofran, it's what I use when I have an intense migraine that is accompanied by nausea; it's also what is used in cancer patients to control nausea related to chemotherapy. Zofran was of no help. I asked for Phenergan (the most wonderful pharmacological invention along with Benadryl!) but it never came...don't know what happened there....so I just used Dilaudid to fall asleep and let the nausea pass.
I'm able to ambulate around the house freely with no pain, but I don't press my luck by standing for too long and definitely don't lift heavy objects. I've graduated from a clear diet consisting of broth, frozen ices and jello, to a soft diet that includes yogurt and a little bit of milk. I won't be able to have fresh fruit for a while, and I may not be able to have seeds forever because they can become stuck, maybe meat too...it's going to be a lot of trial and error.
Monday, July 16, 2012
Conversation about surgery with my son with Asperger's
In preparation for surgery I decided to prepare my youngest son by processing any question, worries, anxiety or logistical concerns he might have. Because he has Asperger's I was ready for anything, because he also has Bipolar Disorder I was ready for anxiety to develop. So while we were out for a drive I approached the subject.
Mom: Do you have any questions for me about the surgery?
Ian: No.
Mom: Is there anything that worries you about the surgery?
Ian: No....well, are they going to break you again?
Mom: Break me again? what do you mean?
Ian: Like the last time. You went to the hospital, came back and then you didn't have a voice. Then you would have to come downstairs to remind me to take me medicines. Then you went back to the hospital.
Mom: Oh, so you're worried that I won't have a voice, or something else like that will happen and I'll have to go back to the hospital again?
Ian: Yes. I mean, Mark will be home to tell me to take my pills but....(going silent)
Mom: He's just not your mom.
Ian: Yes.
Mom: Well, last time the surgeon did his job right. He didn't break me. It just happened that they found something ELSE that needed fixing. So they helped mom! They fixed two things! That's what they're fixing now.
Ian: Oh, okay. But, if he breaks you, I'm going to have to punch him.
Mom: Okay. I guess that's fair. Deal.
His Asperger's brain is just so fun and interesting, I love it! He thought they broke me! But, he must have been feeling so scared this entire time that there was something broken, loose, maybe rattling inside of me. And he may have even been angry at the surgeon for doing something to his mom that left her different than she was before. He was scared about what was going to happen to him, who was going to take care of him with his mom broken.
Sometimes I'm scared too...okay a lot I'm scared too! I worry about having to take so many medicines and their side effects. I worry whether I will need more surgery and its complications, or conversely, whether I will need surgery and can't have it because my body won't be able to handle it, or there just won't be any pain medications available to treat me with. I worry whether my condition will cause me to deteriorate further and who will take care of my boys, are there any suitable candidates who will raise them the way I would? I worry about the cost of being sick.
I worry whether I will have the energy and strength to continue caring for Ian, managing his mood, taking him to his therapies and...OMG homework, what a nightmare!
It's too much worry to worry about it. I get whelmed and overwhelmed. I wouldn't even make it out of the bed in the morning! I think I'll just focus on the green and think about how much my boys make me laugh :))
Mom: Do you have any questions for me about the surgery?
Ian: No.
Mom: Is there anything that worries you about the surgery?
Ian: No....well, are they going to break you again?
Mom: Break me again? what do you mean?
Ian: Like the last time. You went to the hospital, came back and then you didn't have a voice. Then you would have to come downstairs to remind me to take me medicines. Then you went back to the hospital.
Mom: Oh, so you're worried that I won't have a voice, or something else like that will happen and I'll have to go back to the hospital again?
Ian: Yes. I mean, Mark will be home to tell me to take my pills but....(going silent)
Mom: He's just not your mom.
Ian: Yes.
Mom: Well, last time the surgeon did his job right. He didn't break me. It just happened that they found something ELSE that needed fixing. So they helped mom! They fixed two things! That's what they're fixing now.
Ian: Oh, okay. But, if he breaks you, I'm going to have to punch him.
Mom: Okay. I guess that's fair. Deal.
His Asperger's brain is just so fun and interesting, I love it! He thought they broke me! But, he must have been feeling so scared this entire time that there was something broken, loose, maybe rattling inside of me. And he may have even been angry at the surgeon for doing something to his mom that left her different than she was before. He was scared about what was going to happen to him, who was going to take care of him with his mom broken.
Sometimes I'm scared too...okay a lot I'm scared too! I worry about having to take so many medicines and their side effects. I worry whether I will need more surgery and its complications, or conversely, whether I will need surgery and can't have it because my body won't be able to handle it, or there just won't be any pain medications available to treat me with. I worry whether my condition will cause me to deteriorate further and who will take care of my boys, are there any suitable candidates who will raise them the way I would? I worry about the cost of being sick.
I worry whether I will have the energy and strength to continue caring for Ian, managing his mood, taking him to his therapies and...OMG homework, what a nightmare!
It's too much worry to worry about it. I get whelmed and overwhelmed. I wouldn't even make it out of the bed in the morning! I think I'll just focus on the green and think about how much my boys make me laugh :))
Sunday, July 15, 2012
EFT a tool in the toolbox
I had every intention of writing an update immediately after my second EFT session, it went really well and I got so much insight out of it. But, at the end of the day I felt exhausted and had a headache. I think in part due to all of the emotions and memories that were worked on, it felt like an overwhelming of my senses. However, since I am committed to the therapy, I worked the EFT on the feeling of exhaustion and the headache and I did get something out if it.
The technique has been amazing. One of the things that we explored was the pain in my neck. I expressed that "I am my own pain in the neck" and that the pain stems from my perfectionist tendencies. WOW! As we continued to explore this, I began feeling a tightness in my chest that I related to oppression and feeling overwhelmed at home. I made the connection that because I'm a perfectionist and set high standards for myself I expressed, "I bite off more than I can chew". WHOA! The possibilities in these statements: I've subjected myself to stress and medical issues and have been gaining weight over the years becuase I have taken on more than I can handle due to my own perfectionistic ideas stemming from cognitive distortions learned in childhood!
I also recalled a memory of being 10 years old, in school, waiting in line after lunch to go back to classroom. I was chewing on a straw and the girl in front of me accidentally bumped in to me. The straw became lodge in the back of my mouth where the molars are. I had to pull the straw out and it started bleeding a lot. I was also in a LOT of pain. But, for whatever reason, I didn't tell anyone because I thought I would get in trouble. So I just swallowed the blood, and the pain all day long. I also did not cry, because if I cried someone would ask me what was wrong and that would call attention. So I just kept swallowing the blood and the pain. I clenched my fists and was sweating cold, I couldn't think and was tense all day long and it kept throbbing. I remember getting home and going to the bathroom to rinse my mouth hoping the bleeding would stop. It didn't stop bleeding for a while and it kept throbbing for a while, but I still didn't tell anyone I was hurt, not even my mother.
Why would I think I was in trouble? It was an accident? I hadn't done anything wrong and it wouldn't have gotten anyone in trouble, so why not ask for help?
Just in that memory I gained insight into the ways that I thought I had to keep my pain hidden, suffer in silence, thought that voicing my needs would "get me in trouble" (the dramatic, hysterical woman), thought that my needs were not important, swallowed my pain (eating for comfort), and so many other things! It was so enlightening and liberating! No wonder I need acid reflux surgery, all of this feelings want to come up! No wonder I have a hiatal hernia, my stomach is full of suppressed feeling and they're about to burst out! The sour, acidic feelings that have been festering for years, have been eroding and eating their way up my esophagus even damaging my vocal chords! WOW that's powerful!
The best part is, now that I have this tool I can use to gain access to other areas that need to be addressed, hopefully before anymore damage is done to my body...and any more surgery is needed!
Now, I'm not saying that EFT, or any other therapy, is reason to ignore medical advice. Therapy, is another tool in the tool box that can be used to help manage emotional aspects of living with an organic disease. I have chosen to combine EFT and Counseling to manage pain, depression and anxiety related to Ehlers-Danlos Type III, Hypermobility Syndrome and all of its accompanying conditions. However, I continue to receive medical attention and take my medication as prescribed. I do however hold out hope that at some point I can become asymptomatic and functional and regain control over my life and my condition, not let it control me and my life.
The technique has been amazing. One of the things that we explored was the pain in my neck. I expressed that "I am my own pain in the neck" and that the pain stems from my perfectionist tendencies. WOW! As we continued to explore this, I began feeling a tightness in my chest that I related to oppression and feeling overwhelmed at home. I made the connection that because I'm a perfectionist and set high standards for myself I expressed, "I bite off more than I can chew". WHOA! The possibilities in these statements: I've subjected myself to stress and medical issues and have been gaining weight over the years becuase I have taken on more than I can handle due to my own perfectionistic ideas stemming from cognitive distortions learned in childhood!
I also recalled a memory of being 10 years old, in school, waiting in line after lunch to go back to classroom. I was chewing on a straw and the girl in front of me accidentally bumped in to me. The straw became lodge in the back of my mouth where the molars are. I had to pull the straw out and it started bleeding a lot. I was also in a LOT of pain. But, for whatever reason, I didn't tell anyone because I thought I would get in trouble. So I just swallowed the blood, and the pain all day long. I also did not cry, because if I cried someone would ask me what was wrong and that would call attention. So I just kept swallowing the blood and the pain. I clenched my fists and was sweating cold, I couldn't think and was tense all day long and it kept throbbing. I remember getting home and going to the bathroom to rinse my mouth hoping the bleeding would stop. It didn't stop bleeding for a while and it kept throbbing for a while, but I still didn't tell anyone I was hurt, not even my mother.
Why would I think I was in trouble? It was an accident? I hadn't done anything wrong and it wouldn't have gotten anyone in trouble, so why not ask for help?
Just in that memory I gained insight into the ways that I thought I had to keep my pain hidden, suffer in silence, thought that voicing my needs would "get me in trouble" (the dramatic, hysterical woman), thought that my needs were not important, swallowed my pain (eating for comfort), and so many other things! It was so enlightening and liberating! No wonder I need acid reflux surgery, all of this feelings want to come up! No wonder I have a hiatal hernia, my stomach is full of suppressed feeling and they're about to burst out! The sour, acidic feelings that have been festering for years, have been eroding and eating their way up my esophagus even damaging my vocal chords! WOW that's powerful!
The best part is, now that I have this tool I can use to gain access to other areas that need to be addressed, hopefully before anymore damage is done to my body...and any more surgery is needed!
Now, I'm not saying that EFT, or any other therapy, is reason to ignore medical advice. Therapy, is another tool in the tool box that can be used to help manage emotional aspects of living with an organic disease. I have chosen to combine EFT and Counseling to manage pain, depression and anxiety related to Ehlers-Danlos Type III, Hypermobility Syndrome and all of its accompanying conditions. However, I continue to receive medical attention and take my medication as prescribed. I do however hold out hope that at some point I can become asymptomatic and functional and regain control over my life and my condition, not let it control me and my life.
Friday, July 13, 2012
The $35 haircut and self-care
Two days ago I splurged in a most wonderful way: I got a $35 haircut! I've never spent that much for a haircut, in fact, even a mani-pedi combo is $45, what was I doing? Let me explain the reasons behind this apparent frittering away of money, which is not growing off trees these days. The last time I had a haircut, was 4 months before (give or take) and it was the cheap kind. I would usually not have a problem with this, especially since I usually just get a trim and my bangs re-shaped, except the girl totally butchered my hair! I have curly hair that will do just about anything and this girl knew nothing about how to cut curly hair. So as she pulled and my hair "seemed" to keep stretching every way she pulled she kept cutting. Instead of even layers I ended up with shelves of layers starting at the top of my head...WHAT THE...!!! There was no way to fix it. My only option was to grow it out.
Recently, I went to a friend's wedding and decided to go to the salon to have my hair straightened for the wedding. In the past I would have probably done this myself, but the Ehlers-Danlos won't allow me to hold up my arms long enough to do one piece of hair. The hairstylist, Judy, was having so much fun with my hair she not only straightened it, but even gave me a little bump and styled it. I LOVED what she did! Not only that, the entire experience was wonderful. She noticed the difference in the layers and said she could fix it and get my hair looking pretty. Judy was so wonderful that I had to go back to her. The haircut cost as much as the styling because Judy is a master stylist... it was totally worth it!
This haircut, and the $35 was also an act of Self-care: I was getting something done for me, it was getting done right by someone who cared for her clients and I knew I was going to enjoy the experience. It also needed to get my hair manageable in length and styling before surgery, also and act of self-care. It had been a few weeks but Judy remembered me, she even said that she sees a lot clients, not only in one day but through the weeks, and I stuck in her mind. She said "I'm going to take care of you". I knew these were going to be the best $35 dollars I ever spent!
Recently, I went to a friend's wedding and decided to go to the salon to have my hair straightened for the wedding. In the past I would have probably done this myself, but the Ehlers-Danlos won't allow me to hold up my arms long enough to do one piece of hair. The hairstylist, Judy, was having so much fun with my hair she not only straightened it, but even gave me a little bump and styled it. I LOVED what she did! Not only that, the entire experience was wonderful. She noticed the difference in the layers and said she could fix it and get my hair looking pretty. Judy was so wonderful that I had to go back to her. The haircut cost as much as the styling because Judy is a master stylist... it was totally worth it!
This haircut, and the $35 was also an act of Self-care: I was getting something done for me, it was getting done right by someone who cared for her clients and I knew I was going to enjoy the experience. It also needed to get my hair manageable in length and styling before surgery, also and act of self-care. It had been a few weeks but Judy remembered me, she even said that she sees a lot clients, not only in one day but through the weeks, and I stuck in her mind. She said "I'm going to take care of you". I knew these were going to be the best $35 dollars I ever spent!
Thursday, July 12, 2012
On EFT and Imagery
Yesterday, I had my first session of Emotional Freedom Technique (EFT) and hypnosis. The hypnosis was really more akin to deep relaxation, and the "therapist" explained it as such since it was we didn't have much time to go deeper. First, let me say that I can already feel the difference! If this is placebo I WILL TAKE IT!!! This morning I woke up at 6am and upon opening my eyes, I immediately took the muscle relaxers because I always end up hurting myself while sleeping; 6 hours later when I started to feel pain again, I did the EFT technique (tapping) instead of taking the medicine right away. I reminded myself to stay open to method, and if it didn't work this time I could always take my medicine and try again next time. However, I completely got involved in the EFT process, and started working through the pain, emotions and material that came up and in the end did not need any medication at all! It wasn't until 4pm that I noticed that I hadn't needed the meds at all. But, because I had to drive, which causes a lot of pain and inflammation, I took half of my usual dose as prophylactic treatment. It was HALF the usual dose! I am so excited and can't wait until my next session!
The hypnosis or deep relaxation also felt very soothing. I have never been good at meditating or following guided imagery. One reason is that when I attempt it, my inner eye is always lit up with bright lights, flashing colors, stars and other swirly things. This is due to the migraine auras and they won't turn off. Another reason is that my body also constantly feels "loud". Because the pain is constant and can be so widespread, it also feels like a vibration, a noise, throughout the body. This widespread pain is related to the use of accessory muscles utilized to support hypermobile joints, muscles, and ALL systems of the body. Perhaps that's why I feel it like a vibration throughout and see visual imagery in my inner eye, it also affects neural connections. However. I can't shut off the pain, there isn't a switch or I would have used it a Loooooong time ago! Rather, I had never had the pain shut off (other than that 1 week on Lyrica). Hypnosis felt like a shutting down of all sound and vibration in my body; it was the shut off switch. And, for the first time, I was able to produce a complete visualization with sounds, scent, and feeling, that ACTUALLY FELT RELAXING! The "therapist" had asked me to tell her where I felt safe and I answered: safe is a warm day at the beach, with a warm breeze, under the shade of a palm tree, hearing the waves, and reading a good book! WOW! Where did THAT come from??? I don't know but obviously I have been there before and thanks to the hypnosis I know how to get back there and re-create that feeling of safety and relaxation. I have a tranquil-safe place!
I'm optimistic about the long term results of the EFT even though that was just session ( plus the little bit of amateur work I have done on my own). I'm hopeful, excited and optimistic and I haven't been that in a while. Anything that will help relieve the pain and reduce medication intake without harming the body or worsen the course of the disease is A-OKAY!!!
I had to take the physio-tape off early this week because it started giving me a rash (of course). I've also been wearing the support stockings/hose for the POTS but they've been causing bruising on my legs (the EDS makes my skin thin and fragile, prone to easy bruising). I also haven't noticed any benefit to having them on anyway. I haven't noticed any improvement in the POTS with the hose and only slightly with the Florinef, I still get dizzy a lot. Anyway, that will all have to wait until after the surgery is done and healed.
Trusting that all is well...
The hypnosis or deep relaxation also felt very soothing. I have never been good at meditating or following guided imagery. One reason is that when I attempt it, my inner eye is always lit up with bright lights, flashing colors, stars and other swirly things. This is due to the migraine auras and they won't turn off. Another reason is that my body also constantly feels "loud". Because the pain is constant and can be so widespread, it also feels like a vibration, a noise, throughout the body. This widespread pain is related to the use of accessory muscles utilized to support hypermobile joints, muscles, and ALL systems of the body. Perhaps that's why I feel it like a vibration throughout and see visual imagery in my inner eye, it also affects neural connections. However. I can't shut off the pain, there isn't a switch or I would have used it a Loooooong time ago! Rather, I had never had the pain shut off (other than that 1 week on Lyrica). Hypnosis felt like a shutting down of all sound and vibration in my body; it was the shut off switch. And, for the first time, I was able to produce a complete visualization with sounds, scent, and feeling, that ACTUALLY FELT RELAXING! The "therapist" had asked me to tell her where I felt safe and I answered: safe is a warm day at the beach, with a warm breeze, under the shade of a palm tree, hearing the waves, and reading a good book! WOW! Where did THAT come from??? I don't know but obviously I have been there before and thanks to the hypnosis I know how to get back there and re-create that feeling of safety and relaxation. I have a tranquil-safe place!
I'm optimistic about the long term results of the EFT even though that was just session ( plus the little bit of amateur work I have done on my own). I'm hopeful, excited and optimistic and I haven't been that in a while. Anything that will help relieve the pain and reduce medication intake without harming the body or worsen the course of the disease is A-OKAY!!!
I had to take the physio-tape off early this week because it started giving me a rash (of course). I've also been wearing the support stockings/hose for the POTS but they've been causing bruising on my legs (the EDS makes my skin thin and fragile, prone to easy bruising). I also haven't noticed any benefit to having them on anyway. I haven't noticed any improvement in the POTS with the hose and only slightly with the Florinef, I still get dizzy a lot. Anyway, that will all have to wait until after the surgery is done and healed.
Trusting that all is well...
Wednesday, July 11, 2012
On voicing your needs...
I want to start by saying I have audience in Russia and Germany! Wow, how exciting! I know I have work to do on this blog to make it more attractive, even more informative; I promise to do it! In fact, I will be reading and learning about just how to do that while I'm laid up after surgery. I'll even try to post more often even if I have nothing to say...joking :)
Well, 1 week to go for surgery, and it's going to be a busy one! Which is exactly the wrong thing to do. In fact, I had a dream two nights ago in which I went to an emergency room and while everyone was hysterical not knowing what to do, I said "how 'bout I just lay down in the bed to start with?" Hhhmmm, is my subconscious sending me a message or what?! I will be laid up for at least two weeks post-surgery (with EDS probably more) so I'll get plenty of rest then, for now I just need to get things done.
I have decided to try EFT and hypnotherapy to try to manage pain. I figure I have nothing to loose and everything to gain. I learned a little bit about EFT during my Master's in Counseling and, although controversial, it has its place in therapy and I'm open to trying it. Frankly, I was always curious about it too. I have "hashed and rehashed" all the traumas in my past and its time to move on. EFT allows individuals to do that without having to re-tell their story (*Note: I have processed my traumas, I am not by-passing or attempting to deny them). Since I cannot take any narcotics or NSAID's, hypnotherapy might come in useful for pain management. The "therapist" and I had a conversation and she showed great concern in trying to getting a couple of hypno treatments in before my surgery so the pain would be more manageable since I may not be given pain medication, or only a few days worth. I think the conversation we had was important and led me to believe we could work together so I made an appointment with her. She explained her methods and techniques, how she worked, but more importantly her concern, openness and flexibility in client care. I will update on whether this worked! (*Note: I recommend this conversation to anyone seeking any type of therapy).
I started a little experiment in my home. In the last few days I have tried "complaining" about my pain less often. Bear with me as this may not be as obvious you think. I did this so not to burden my family as much, and well, because I know it can be annoying. When I started the experiment I didn't mention it to anyone in my house to see if: a) they noticed, b) if they noticed a difference in me c) I noticed a difference in the them. Not one said a word. They did not assume that I was feeling better and they did not seem any more cheerful either. I had been doing this for at least two weeks at this point so some results were likely to be observable. This stumped me. I finally asked my husband directly if he'd noticed a difference and how it felt for him, bear in mind, he's an Engineer and I'm a Therapist so we process things differently, his responses were "I noticed a little bit", "I appreciate it". This was not sufficient for me. The one difference I noticed was in me: I felt even more alone! I expected more from my family because it took GREAT effort on my part to keep my pain hidden away, to keep my pain silent. Speaking about my pain allowed me to share my burden. It might seem selfish, it might be annoying, but I didn't have to carry it alone. So, what about me? Speaking about my pain at the end of the day, was the equivalent of saying "hi honey, how was your day?" or asking my kids "how was your day at school?" It was an unburdening, a letting go that was heard and acknowledge by someone. I had been alone already that day attempting to carry out the few activities that I can do: cook and fold clothes on a good day. I want somebody to ask me how my day was! I want somebody to say I'm sorry you hurt! Yes, everyday! I want somebody to be interested in my painful day as much as I'm interested in their meetings and in their friends, and whether they liked dinner...and know where their clothes are...and what they want for dinner tomorrow...!
I'm not mad at my family, after all, it was just an experiment. But, not a failed experiment. I know I have to make my needs known. I have to use my words and give voice to what my needs are and how I would like them fulfilled. They are not mind readers and they can't feel what I feel. Even my son EDS doesn't feel the same level of pain I do; he's much more functional and his pain is well controlled. My family is usually very supportive. I relinquished power for a short period of time; it's time to take back and use my voice again. That's not selfish of me.
In faith, trusting that all is well...
Well, 1 week to go for surgery, and it's going to be a busy one! Which is exactly the wrong thing to do. In fact, I had a dream two nights ago in which I went to an emergency room and while everyone was hysterical not knowing what to do, I said "how 'bout I just lay down in the bed to start with?" Hhhmmm, is my subconscious sending me a message or what?! I will be laid up for at least two weeks post-surgery (with EDS probably more) so I'll get plenty of rest then, for now I just need to get things done.
I have decided to try EFT and hypnotherapy to try to manage pain. I figure I have nothing to loose and everything to gain. I learned a little bit about EFT during my Master's in Counseling and, although controversial, it has its place in therapy and I'm open to trying it. Frankly, I was always curious about it too. I have "hashed and rehashed" all the traumas in my past and its time to move on. EFT allows individuals to do that without having to re-tell their story (*Note: I have processed my traumas, I am not by-passing or attempting to deny them). Since I cannot take any narcotics or NSAID's, hypnotherapy might come in useful for pain management. The "therapist" and I had a conversation and she showed great concern in trying to getting a couple of hypno treatments in before my surgery so the pain would be more manageable since I may not be given pain medication, or only a few days worth. I think the conversation we had was important and led me to believe we could work together so I made an appointment with her. She explained her methods and techniques, how she worked, but more importantly her concern, openness and flexibility in client care. I will update on whether this worked! (*Note: I recommend this conversation to anyone seeking any type of therapy).
I started a little experiment in my home. In the last few days I have tried "complaining" about my pain less often. Bear with me as this may not be as obvious you think. I did this so not to burden my family as much, and well, because I know it can be annoying. When I started the experiment I didn't mention it to anyone in my house to see if: a) they noticed, b) if they noticed a difference in me c) I noticed a difference in the them. Not one said a word. They did not assume that I was feeling better and they did not seem any more cheerful either. I had been doing this for at least two weeks at this point so some results were likely to be observable. This stumped me. I finally asked my husband directly if he'd noticed a difference and how it felt for him, bear in mind, he's an Engineer and I'm a Therapist so we process things differently, his responses were "I noticed a little bit", "I appreciate it". This was not sufficient for me. The one difference I noticed was in me: I felt even more alone! I expected more from my family because it took GREAT effort on my part to keep my pain hidden away, to keep my pain silent. Speaking about my pain allowed me to share my burden. It might seem selfish, it might be annoying, but I didn't have to carry it alone. So, what about me? Speaking about my pain at the end of the day, was the equivalent of saying "hi honey, how was your day?" or asking my kids "how was your day at school?" It was an unburdening, a letting go that was heard and acknowledge by someone. I had been alone already that day attempting to carry out the few activities that I can do: cook and fold clothes on a good day. I want somebody to ask me how my day was! I want somebody to say I'm sorry you hurt! Yes, everyday! I want somebody to be interested in my painful day as much as I'm interested in their meetings and in their friends, and whether they liked dinner...and know where their clothes are...and what they want for dinner tomorrow...!
I'm not mad at my family, after all, it was just an experiment. But, not a failed experiment. I know I have to make my needs known. I have to use my words and give voice to what my needs are and how I would like them fulfilled. They are not mind readers and they can't feel what I feel. Even my son EDS doesn't feel the same level of pain I do; he's much more functional and his pain is well controlled. My family is usually very supportive. I relinquished power for a short period of time; it's time to take back and use my voice again. That's not selfish of me.
In faith, trusting that all is well...
Friday, July 6, 2012
On Well Wishers and Advice
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...
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...
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...
Subscribe to:
Posts (Atom)