LOL
Let's see what the Universe has planned for me....
In the meantime,
Friday, August 10, 2012
Out for a few days, don't forget me!
I just wanted to say that I will be out for about 10 days. I need some well deserved rest and relaxation. I appreciate everyone who has been coming by, whether "sutmblingupon" or visiting regularly, and don't want you to forget me. I will be back!
LOL
Let's see what the Universe has planned for me....
In the meantime,
LOL
Let's see what the Universe has planned for me....
In the meantime,
Wednesday, August 8, 2012
Radiofrequency Neurotomy for pain relief
It's been really quiet with my boys gone on vacation. It's RELAXING.... I'll admit, I feel kind of guilty....but it's a well deserved guilty.
On my visit two days ago to the pain specialist, we planned to do radiofrequency on my lower back. Radiofrequency Nurotomy basically involves burning the nerve endings on the spine in order to provide pain relief when all other methods have failed. However, there are steps that have to be performed before jumping right into this. The first and less invasive method tried is pharmacology. Ideally, a non-narcotic medication such as Cymbalta, Wellbutrin, Lyrica or Neurontin, would be preferable to most doctors, but narcotics like Vicodin and Percocet are also recognized as viable. It's also necessary to rule out any physical damage that may be causing the pain such as herniated or bulging discs that may need to be addressed through other means such as surgery or physical therapy. This would be done with imaging like an MRI or CT SCAN. Next, facet injections are used to deliver numbing medication into the spine. If there is any pain relief, it is a positive response and it would be viable to move on to the next step. For some people, facet injections alone are enough to provide pain relief, but for most relief will last from an hour up to a week before the pain returns. In some cases, a step may be added here, in the form of an epidural injection. This would depend on patient history, prognosis and how aggressive the patient wants treatment to be; in some cases an epidural may be enough to control pain. If there is no success with an epidural, or it is not used, then radiofrequency would be the next step.
http://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain
In my case, we skipped the first step altogether because I can't take any neuropathic medications, they all give me adverse effects from depression to violent migraines. I also can't take any narcotic medications because I have developed allergic reactions to them within the last year. This is something that actually gets me on the doctor's good side, they know I'm in pain but am not drug seeking....then I frustrate them again when they try to give me NSAID's but I can't take them either because I have erosive esophagitis because of the GERD. Then they don't like me anymore and say "Well what do you want me to give you? What can you take?" I just say "Nothing, I'll be okay. It's just another pain."
**NOTE: These side effects, from what may be serotonin syndrome, to allergic reactions which may be mast cell reaction or ideopathic anaphylaxis are linked to EDS, but there is still research being done on these subjects.
I've already had 2 rounds of facet injections, one on each side with positive results. The first one lasted about a day. The second lasted about 1 month on and off until it wore off completely. I've noticed increased pain if sitting for 1 hour or more. I have to lay down more often throughout the day and if I have a long day I may need help getting up from bed the next day. Because of my history and prognosis, we're just going straight to the radiofrequency and skipping the epidural. There's no point in trying something that may not work and will just subject me to an unnecessary procedure that could cause more harm, the radiofrequency will get right to the point and has higher probability of being effective. Of course EDS'ers are full of surprises so if 30-50% of people get significant pain relief for 2 years, and 50% get some pain relief for a shorter amount of time, I'll probably be in that lower and shorter range, that's still better than now! My life changed the 1 month that I had pain relief from the facet injection alone. It changed enough for me to notice when I went back to having pain, so I'll take those odds.
The doctor and I also discussed getting the initial facet injections in my cervical vertebrae because of the continuous spasms and bursitis I get. Before we do this he will have me see the surgeon again to approve it. I've had imaging previously which showed C3 was starting to bulge, C4 had arthritis and C5-C7 is my fusion (which was 75% fused already!). I'll speak with the surgeon about the possibility of chronic dislocation of the shoulder leading to the bursitis, and my wrists. I don't think dislocating that will deter from having the injections done, if I am dislocating I don't feel any pain directly related to it, I just feel the bursitis and muscle pain....I'm happy to let go of that! But, maybe he can prescribe a brace for support when I sleep and on busy days.
I've already been explained that radiofrequency HURTS and that I'll be in increased pain for about 1 month afterwards....and that's PER SIDE...I'm getting both sides done. They're done 1 week apart just to make sure that there's no adverse reaction to treatment.... and to prolong torture as much as possible for their sick entertainment....Joking, LOL!!!
I'm sure I'll be fine. I made it through the acid reflux surgery with no pain meds, I'll make it through this too! I'll just do some auto-hypnosis and EFT before the procedures and....
..... trust that all is and will be well....
On my visit two days ago to the pain specialist, we planned to do radiofrequency on my lower back. Radiofrequency Nurotomy basically involves burning the nerve endings on the spine in order to provide pain relief when all other methods have failed. However, there are steps that have to be performed before jumping right into this. The first and less invasive method tried is pharmacology. Ideally, a non-narcotic medication such as Cymbalta, Wellbutrin, Lyrica or Neurontin, would be preferable to most doctors, but narcotics like Vicodin and Percocet are also recognized as viable. It's also necessary to rule out any physical damage that may be causing the pain such as herniated or bulging discs that may need to be addressed through other means such as surgery or physical therapy. This would be done with imaging like an MRI or CT SCAN. Next, facet injections are used to deliver numbing medication into the spine. If there is any pain relief, it is a positive response and it would be viable to move on to the next step. For some people, facet injections alone are enough to provide pain relief, but for most relief will last from an hour up to a week before the pain returns. In some cases, a step may be added here, in the form of an epidural injection. This would depend on patient history, prognosis and how aggressive the patient wants treatment to be; in some cases an epidural may be enough to control pain. If there is no success with an epidural, or it is not used, then radiofrequency would be the next step.
http://www.spine-health.com/treatment/injections/radiofrequency-neurotomy-facet-and-sacroiliac-joint-pain
In my case, we skipped the first step altogether because I can't take any neuropathic medications, they all give me adverse effects from depression to violent migraines. I also can't take any narcotic medications because I have developed allergic reactions to them within the last year. This is something that actually gets me on the doctor's good side, they know I'm in pain but am not drug seeking....then I frustrate them again when they try to give me NSAID's but I can't take them either because I have erosive esophagitis because of the GERD. Then they don't like me anymore and say "Well what do you want me to give you? What can you take?" I just say "Nothing, I'll be okay. It's just another pain."
**NOTE: These side effects, from what may be serotonin syndrome, to allergic reactions which may be mast cell reaction or ideopathic anaphylaxis are linked to EDS, but there is still research being done on these subjects.
I've already had 2 rounds of facet injections, one on each side with positive results. The first one lasted about a day. The second lasted about 1 month on and off until it wore off completely. I've noticed increased pain if sitting for 1 hour or more. I have to lay down more often throughout the day and if I have a long day I may need help getting up from bed the next day. Because of my history and prognosis, we're just going straight to the radiofrequency and skipping the epidural. There's no point in trying something that may not work and will just subject me to an unnecessary procedure that could cause more harm, the radiofrequency will get right to the point and has higher probability of being effective. Of course EDS'ers are full of surprises so if 30-50% of people get significant pain relief for 2 years, and 50% get some pain relief for a shorter amount of time, I'll probably be in that lower and shorter range, that's still better than now! My life changed the 1 month that I had pain relief from the facet injection alone. It changed enough for me to notice when I went back to having pain, so I'll take those odds.
The doctor and I also discussed getting the initial facet injections in my cervical vertebrae because of the continuous spasms and bursitis I get. Before we do this he will have me see the surgeon again to approve it. I've had imaging previously which showed C3 was starting to bulge, C4 had arthritis and C5-C7 is my fusion (which was 75% fused already!). I'll speak with the surgeon about the possibility of chronic dislocation of the shoulder leading to the bursitis, and my wrists. I don't think dislocating that will deter from having the injections done, if I am dislocating I don't feel any pain directly related to it, I just feel the bursitis and muscle pain....I'm happy to let go of that! But, maybe he can prescribe a brace for support when I sleep and on busy days.
I've already been explained that radiofrequency HURTS and that I'll be in increased pain for about 1 month afterwards....and that's PER SIDE...I'm getting both sides done. They're done 1 week apart just to make sure that there's no adverse reaction to treatment.... and to prolong torture as much as possible for their sick entertainment....Joking, LOL!!!
I'm sure I'll be fine. I made it through the acid reflux surgery with no pain meds, I'll make it through this too! I'll just do some auto-hypnosis and EFT before the procedures and....
..... trust that all is and will be well....
Sunday, August 5, 2012
Physically, emotionally, mentally spent...
Sadly, I haven't been able to write for a few days. I've needed to but just haven't been able to. These days it just seems as if nothing is going right and as if nothing I do helps.
First my wrist. It's not broken and apparently the ligament is not torn. Yay me...That's as far as any good news is going to go. I went to the Ortho the Urgent Care referred me to, and their x-ray's were much clearer. The diagnosed De Quervain's, fancy name for tendonitis. After asking the routine, do you type a lot? do you have toddlers? because that is the population the most see it in, I made it easy for them and said "I have EDS, this is just par for the course". We agreed on a steroid shot in the tendon after explaining that this would be my 3rd shot in my right wrist, and 1 in my left left wrist in the last 3 years, upon hearing that he suggested that we talk surgery at the follow up appointment. SURGERY?! REALLY?! I'm not ready to talk surgery, I haven't gotten over the last one! UGGGGGGHHHHH!!! AAAAAAGGGGHHHHH!!!
It's been 4 days since my steroid shot and I'm feeling MORE pain that BEFORE the shot! I've never had this much pain after a steroid shot to the wrist. I didn't even have pain when I hurt myself in the first place! Well, tomorrow I have an appointment scheduled with the pain management specialist at CAST. Fortunately, he can treat tendonitis, as well as, bursitis and migraines! I have planned a few topics for discussion: bursitis and possible chronic dislocation, any testing that could be done to detect this (such as wear on the joints) and whether there might be a sling I can wear on busy days or at night; facet injections for neck/shoulder pain; migraines and occipital/trapezium injections and how long it would take to get in to actually see him for these when I'm status migranosus; and of course, treating my biggest current concern, the tendonitis! I don't see why they wouldn't be able to do another shot right then, they also have x-ray there so they could take another look. I would definitely trust them to give me an unbiased opinion on whether surgery is really needed, and trust their referral to be the best possible, since they don't do any work on hands themselves.
It's been hard to get anything done with the wrist splint and the added pain. I can't write, hold a utensil to eat, forget driving...it's sooo freaking painful! I drop everything! I go to grab my phone and I hit and drop the phone, the remote, the Ipod, the water bottle and anything else that's nearby...stupid left hand! And don't get me started on doing my hair! MY HAIR! I can't even tie a ponytail because I can't twist my hand!
My son has also been going through a crisis period with his Bipolar Disorder. During his last doctor visit we decided that adding a morning dose of Seroquel might help keep his mood more stable. He did well on the samples so we decided to get the script; the insurance company denied the coverage. Since then, about 3 weeks, he has been having mood swings and violent rages. He was in partial hospitalization all last week, but was discharged this week because he had to visit his paternal family. I know he doesn't like being out-of-control, and it hurts me to see him like this. It is a daily struggle with him, a very exhausting day-in-day-out, because every little things is like going into combat! Asking him today to put away the dishes that yesterday he put away with no trouble or argument, could result in harsh words, yelling, and broken dishes. Perceived wrongs result in threats. And my heart breaks a little more each day because I worry about his future, his safety and the safety of everybody in the house. He's supposed to start school 2 days after he returns from his trip. He'll also have a follow up scheduled with his doctor and therapist. We all know he may need to go back to partial hospitalization...but at least there is a plan in place for his return.
So this past week, when I didn't write...I was physically, emotionally and mentally spent. Having my wrist in a splint and hurting is exhausting and so limiting. Helping my boys pack for their trip did not help. Worrying about my boys just spent me because I tried and tried and tried to figure out how to postpone this vacation so my son could stay in treatment, but between airfare and a cruise it was economically impossible to change. Nevertheless, if he had to be hospitalized, I would let all the travel go in a second! And, I'm sooooo emotionally spent. I locked myself in the bathroom and cried and cried and cried. I cried because I felt powerless, becuase I felt helpless, becuase I felt frustrated. I cried becuase I didn't know what else to do but cry, because I can't always keep it together, because I don't always have the answers. I cried because it's all just too much for me so I surrendered...
...I cried remembering to just let go and let God. To just let things unravel trusting that God's plan for all of us is in place, that everything is as it should be, and that everything will be alright, and He has us all in His hand...
First my wrist. It's not broken and apparently the ligament is not torn. Yay me...That's as far as any good news is going to go. I went to the Ortho the Urgent Care referred me to, and their x-ray's were much clearer. The diagnosed De Quervain's, fancy name for tendonitis. After asking the routine, do you type a lot? do you have toddlers? because that is the population the most see it in, I made it easy for them and said "I have EDS, this is just par for the course". We agreed on a steroid shot in the tendon after explaining that this would be my 3rd shot in my right wrist, and 1 in my left left wrist in the last 3 years, upon hearing that he suggested that we talk surgery at the follow up appointment. SURGERY?! REALLY?! I'm not ready to talk surgery, I haven't gotten over the last one! UGGGGGGHHHHH!!! AAAAAAGGGGHHHHH!!!
It's been 4 days since my steroid shot and I'm feeling MORE pain that BEFORE the shot! I've never had this much pain after a steroid shot to the wrist. I didn't even have pain when I hurt myself in the first place! Well, tomorrow I have an appointment scheduled with the pain management specialist at CAST. Fortunately, he can treat tendonitis, as well as, bursitis and migraines! I have planned a few topics for discussion: bursitis and possible chronic dislocation, any testing that could be done to detect this (such as wear on the joints) and whether there might be a sling I can wear on busy days or at night; facet injections for neck/shoulder pain; migraines and occipital/trapezium injections and how long it would take to get in to actually see him for these when I'm status migranosus; and of course, treating my biggest current concern, the tendonitis! I don't see why they wouldn't be able to do another shot right then, they also have x-ray there so they could take another look. I would definitely trust them to give me an unbiased opinion on whether surgery is really needed, and trust their referral to be the best possible, since they don't do any work on hands themselves.
It's been hard to get anything done with the wrist splint and the added pain. I can't write, hold a utensil to eat, forget driving...it's sooo freaking painful! I drop everything! I go to grab my phone and I hit and drop the phone, the remote, the Ipod, the water bottle and anything else that's nearby...stupid left hand! And don't get me started on doing my hair! MY HAIR! I can't even tie a ponytail because I can't twist my hand!
My son has also been going through a crisis period with his Bipolar Disorder. During his last doctor visit we decided that adding a morning dose of Seroquel might help keep his mood more stable. He did well on the samples so we decided to get the script; the insurance company denied the coverage. Since then, about 3 weeks, he has been having mood swings and violent rages. He was in partial hospitalization all last week, but was discharged this week because he had to visit his paternal family. I know he doesn't like being out-of-control, and it hurts me to see him like this. It is a daily struggle with him, a very exhausting day-in-day-out, because every little things is like going into combat! Asking him today to put away the dishes that yesterday he put away with no trouble or argument, could result in harsh words, yelling, and broken dishes. Perceived wrongs result in threats. And my heart breaks a little more each day because I worry about his future, his safety and the safety of everybody in the house. He's supposed to start school 2 days after he returns from his trip. He'll also have a follow up scheduled with his doctor and therapist. We all know he may need to go back to partial hospitalization...but at least there is a plan in place for his return.
So this past week, when I didn't write...I was physically, emotionally and mentally spent. Having my wrist in a splint and hurting is exhausting and so limiting. Helping my boys pack for their trip did not help. Worrying about my boys just spent me because I tried and tried and tried to figure out how to postpone this vacation so my son could stay in treatment, but between airfare and a cruise it was economically impossible to change. Nevertheless, if he had to be hospitalized, I would let all the travel go in a second! And, I'm sooooo emotionally spent. I locked myself in the bathroom and cried and cried and cried. I cried because I felt powerless, becuase I felt helpless, becuase I felt frustrated. I cried becuase I didn't know what else to do but cry, because I can't always keep it together, because I don't always have the answers. I cried because it's all just too much for me so I surrendered...
...I cried remembering to just let go and let God. To just let things unravel trusting that God's plan for all of us is in place, that everything is as it should be, and that everything will be alright, and He has us all in His hand...
Wednesday, August 1, 2012
Follow up on my wrist...
I wrote previously about my first dislocation. Well, it kept getting more bothersome. Today I wasn't even able to lift cups or use my hand to push thing, like the coffeemaker; mind you, I have a pretty simple run-of-the-mill coffee maker, none of the stainless steel K-cups stuff. So I decided to go to the Urgent Care and have them take a look and do some X-rays. Better safe than sorry. If it was just a sprain then I had lost nothing and my mind would be at ease. But with EDS, nothing could end up being a huge something and require fixing that could end up leading to surgery.
I'm glad I went to the Urgent Care! My wrist is fractured. Not only that, the POP I heard....was the sound of the ligament being torn from my wrist!!! The nurse and doctor kept asking and telling me that I must be in terrible pain. Weird thing is, I'm not! I have some discomfort, but it's more of an inconvenience that anything else. The doctor asked me what pain meds I could take..."None", I said. Then she asked about ibuprofen..."I can't take it or Naproxen", I said. "Then what can you take for the pain?!", she asked..."Just Tylenol" I said...."Does it help?"she asked..."It's going to have to" I said. LOL. She gave me a referral for an orthopedic specialist and said it was important they see me because of the torn ligament..."it might be serious". I explained to the doctor about the frequent bursitis in my shoulder and my thought that maybe I was dislocating through the night and didn't know it. Her thought was that because I'm a pretty advanced case of EDS and have so much degeneration, I was probably a chronic dislocator and didn't know it. She said, "I'm more surprised that you say you HAVEN'T dislocated or broken anything before. This is a pretty serious injury. And, I don't doubt that you are dislocating through the night." WOW, chronic dislocator? Serious injury? please no more surgery...
All I can say is, I'm sooo glad I had hypnosis! I've heard about how painful fractures, breaks, and torn muscles and ligaments can be, even making football players cry. I DID NOT FEEL A THING! And, I'm so glad because that's one more pain that I can do without. Even the bursitis isn't as painful. I still have to take the Robaxin and Flexeril, but the level of pain is somehow more manageable. I'm still going to ask about the shoulder sling though. I think it will make a difference and bring the pain down even more by preventing it.
For now, I was told to keep wearing the wrist splints that I usually wear when my wrists are hurting from the EDS. I just have to wear them all the time as if they where a cast, and they're just as good. The benefit is they don't get hot, sweaty or itchy. I have to admit, I do take them off for a shower but I just don't use that hand. After all, they're removable so why should I cover them with a plastic bag? Let's just make things easier, right? Vacation is also coming so I'll probably take an ace bandage that I can tie really tight so the splint doesn't get wet and start to rust inside.
I'll see the orthopedic specialist on Friday morning and find out what happens from here. They got me in fast!
Tomorrow I have the two week follow up for the acid reflux surgery. The surgeon may get an earful from me. Today I was not able to eat until 3 pm! I tried eating some mashed potatoes earlier, but they cam right back out. I tried drinking Gatorade, but I couldn't swallow. Darn his nurse! This is NOT normal! And why the heck is HE NOT AVAILABLE?!
Let's see what the Universe has in store for me tomorrow...
I'm glad I went to the Urgent Care! My wrist is fractured. Not only that, the POP I heard....was the sound of the ligament being torn from my wrist!!! The nurse and doctor kept asking and telling me that I must be in terrible pain. Weird thing is, I'm not! I have some discomfort, but it's more of an inconvenience that anything else. The doctor asked me what pain meds I could take..."None", I said. Then she asked about ibuprofen..."I can't take it or Naproxen", I said. "Then what can you take for the pain?!", she asked..."Just Tylenol" I said...."Does it help?"she asked..."It's going to have to" I said. LOL. She gave me a referral for an orthopedic specialist and said it was important they see me because of the torn ligament..."it might be serious". I explained to the doctor about the frequent bursitis in my shoulder and my thought that maybe I was dislocating through the night and didn't know it. Her thought was that because I'm a pretty advanced case of EDS and have so much degeneration, I was probably a chronic dislocator and didn't know it. She said, "I'm more surprised that you say you HAVEN'T dislocated or broken anything before. This is a pretty serious injury. And, I don't doubt that you are dislocating through the night." WOW, chronic dislocator? Serious injury? please no more surgery...
All I can say is, I'm sooo glad I had hypnosis! I've heard about how painful fractures, breaks, and torn muscles and ligaments can be, even making football players cry. I DID NOT FEEL A THING! And, I'm so glad because that's one more pain that I can do without. Even the bursitis isn't as painful. I still have to take the Robaxin and Flexeril, but the level of pain is somehow more manageable. I'm still going to ask about the shoulder sling though. I think it will make a difference and bring the pain down even more by preventing it.
For now, I was told to keep wearing the wrist splints that I usually wear when my wrists are hurting from the EDS. I just have to wear them all the time as if they where a cast, and they're just as good. The benefit is they don't get hot, sweaty or itchy. I have to admit, I do take them off for a shower but I just don't use that hand. After all, they're removable so why should I cover them with a plastic bag? Let's just make things easier, right? Vacation is also coming so I'll probably take an ace bandage that I can tie really tight so the splint doesn't get wet and start to rust inside.
I'll see the orthopedic specialist on Friday morning and find out what happens from here. They got me in fast!
Tomorrow I have the two week follow up for the acid reflux surgery. The surgeon may get an earful from me. Today I was not able to eat until 3 pm! I tried eating some mashed potatoes earlier, but they cam right back out. I tried drinking Gatorade, but I couldn't swallow. Darn his nurse! This is NOT normal! And why the heck is HE NOT AVAILABLE?!
Let's see what the Universe has in store for me tomorrow...
Monday, July 30, 2012
On the Role of Family and Friends
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....
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....
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.
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