I've had a very emotionally and physically draining Memorial day weekend. A week and a half ago my son and I started with asthma possibly because of the heat and high pollen count. We spent the time "sealed" in our house with the central cooling systems fan on so there would some ventilation while having the HEPA filter keeping the house clean.
First, understand my son has been diagnosed with Bipolar and Asperger's and he NEEDS outdoor activity in order to have just the right amount of stimulation for the Asperger's and ventilate negative energy; if he doesn't do this he is NOT the same person! Sunlight, is also, for now (we'll see after the EDS diagnosis), good for because it keep his sleep/wake cycles in balance. So at this point, we're already in trouble. He also had some work to finish on a project in a class he knew he was failing, so sprinkle in a good dose of anxiety. Finally, add to the mix some steroids in the form of a medrol dosepack to throw off his hormones and med balance and you've got just the right combination for a mood disorder and autism meltdown! That's exactly what happened. We had to call 911 in order to keep him and the family safe, and went to Children's Hospital for the psych consult just to make sure we were all on the same page. He already had a regularly schedule therapy appointment the next day and was not a danger to himself or others, so we got to take him home. However, I'm still seeing some of the crankiness which may be the downswing towards depression. I think the old name, "manic-depressive", really captured the essence and swings of the condition. Oh well.
The following day I had 2 doctor's appointments. The first with my orthopedic surgeon. I learned that my C3 vertebrae is starting to bulge a little bit but at this time requires no treatment because its not pinching any nerves. However, it will be routinely monitored because with Ehlers-Danlos I can deteriorate quickly and things can change in no time. I also learned that my neck is completely straight. The doctor explained that is part of the reason for the new bulge and the old herniations, and its what makes me prone to the arthritis of the spine, and may eventually cause bone spurs to develop because the ends of the spine rub up against each other. I'll definitely Google more on this! I also learned the muscles on my left shoulder show scarring because the herniations from C5-C7 went untreated for so long it resulted in damage, hence when I experience muscle spasm they are extremely severe and prolonged. Great! So I will continue PT and use the muscle relaxers as needed but only sporadically so as not to create more medication allergies.
Next appointment was with the Pulmonologist. I had already been on a prednisone pack due to anaphylaxis caused by the MS Contin (morphine sulfate continuous or long acting). I was off a week then I began with asthma symptoms again but Proventil did not seem to be doing anything so I was started on Brovana. It seemed to be helping but I had "coughing fits". He found that my lungs were clear and that I had difficulty on inspiration not expiration, therefore it did not seem as asthma. I did spirometry and a nioxin test and the results supported it was not asthma. He seemed to think I had a vocal cord issue and I confirmed I was schedule to have a vocal cord test because my voice would come and go, become hoarse and had trouble swallowing. AHA! Vocal Cord Dysfunction the great Asthma Imitator, he called it. Apparently, my vocal cords do not open to allow air into my lungs but air can come out...pretty dangerous huh? High dose prednisone on a taper and some antibiotics for a sinus infection. Great, as if I haven't gained enough weight already on the other 2 prednisone packs, now I have take HIGHER doses for a LONGER period of time! Well, I guess not breathing altogether would be worse. I managed to move the vocal test to be done in 2 weeks, he said "tell them the Pulmo said the vocal cord issue is affecting your breathing and needs to be taken care of!" He also said he believes this episode is a direct result of the anaphylaxis...uh,oh! So my throat WAS closing I just didn't know it??? Better keep that EPIPEN even closer!
Next, follow up therapy for my son. Family session between my son and I. He refused to talk at first; I shared my view of things. The therapist did a lot of talking and finally got him to talk. She's so good with him and he really likes her so she gets him to come around. He talked a little more the last few minutes and finally managed a smile or two.
Then I had to run him home, get him a quick bite to eat and get him to his baseball game (all within 30 minutes!). I forgot his evening medicine! Run back home, get my oldest son, grab the meds, drop them off with my husband, run the oldest to his game, come back home. Made it just in the nick of time because I had a nebulizer (breathing treatment machine) that was going to be delivered and the guy was about to leave! My entire body was shaking and I was overheating, not good for ortheostatic tachycardia. My knees were giving out, my ankles hurt, my head was pounding... was it really 7 pm and I really had 1 bowl of cereal and 1 vitamin water all day???
Finally, I had to write a painful email. I wrote to my work supervisors that I would not be coming back to work. As soon as I sent it the email I started crying like a baby. I cried straight non-stop for about an hour and after that, everytime I remembered the email, any of the wonderful co-workers and friends I made at the agency. And of course, I cried when I thought of all the children I had helped or the children I would NOT help. I think I could feel my heart breaking. I could feel ties and bonds severing. It was like a life-line had been lost. I had not worked since December, but being on leave meant there was a chance I would return, there was still a connection to the agency and its members, a connection to those that were and would be my clients, and a direct connection to the Counseling field. It represented a loss in so many ways. A loss of personal vitality, individuality, independence, perseverance, and a loss as my role of advocate and healer. I'll still go to conferences and trainings as much as my body will allow, but it's not the same. I had specialties in my field and was looked to for advice and recommendations. I already feel like an outcast.
I know I was right choice. I really need this time to make the most out of my new treatment plan and get Ian started on his. There will be too many appointments and catastrophic days like yesterday. Too many days unable to breathe and possibly more surgical procedures. Besides, what better way to act as healer and advocate that to be my child's and my own. This was my first step in this new role.
As always, with faith before me, I believe that when one door closes a window opens, and an ending marks a new beginning. There will be better days ahead, let this be the beginning of those days.
Wednesday, May 30, 2012
Wednesday, May 23, 2012
The day I got my diagnosis...
I finally had my appointment with the geneticist. Their process is pretty simple. It consists of an initial interview with a genetic counselor but its really more of background gathering not "counseling" really, genetic or otherwise (just a personal irk). She asked questions regarding family history such as "do you know anyone else in your family that has the same problems you have?" I had NO IDEA if anyone else in my family had this type of problem or hypermobile abilities. I know my father and grandfather had long fingers and played the guitar well, so does my oldest son, did that count? Believe me, I keep tabs on my family history and I know who has diabetes and heart disease, who died from a stroke or old age, and of course, I know ALL of the mental health problems diagnosed or not! But this? Did they even have this back then??? This is what they called double "jointed-ness" accompanied by growing pains. I don't think either of those things were ever recognized before my generation. Now its was an ability that is put to use through gymnastics, swimming and its expected side-effects are arthritic like aches and pains and, at its worst, joint dislocations and surgeries. I will add that I did the gymnastic and swimming thing when I was a child and had "growing pains" all the time!
After gathering information, the genetic counselor then meets with the geneticist for a couple of minutes prior to the doctor meeting with me. She gave him the "case history" and put him "up to speed". I could hear them speaking outside my door but I couldn't really make out much of the conversation. I started getting extremely anxious and I felt my heart drop. I couldn't answer the questions about my family history so I couldn't possibly have this, could I??? I had failed the test! This would be another dead end and I would go home with no answers...again.
The doctor came in the room and immediately put me at ease with his awkward geekiness and his huge smile. He reviewed with me what the genetic counselor had just explained to him (impressively accurate for just a 2 minute conversation!). He asked me to stretch a few joints. Then he showed me how my body was stretchy-bendy compared to his. WOW! This was something that I could do easily without gaving it a second thought, my surprise was that others COULD NOT bend that way. And here I thought I was such a wuss, I'M ELASTIGIRL!!! (Ironically, Mark does remind me of Mr. Incredible :)
The doctor then explained that to be diagnosed with Hypermobility, I needed to meet 5 out of 9 hypermobile joints: I had 8 out of 9. I didn't make the 9th because I couldn't put the flat of my palm (my fingers were flat on the floor) to the floor while bending over keeping my knees straight by just about .25 mm...I mean really!? Then he checked for additional hypermobile joints that are not part of the official diagnosis but cause symptoms nonetheless: jaw, knees, and fingers are hypermobile too. He also suspects my inner ear joints which cause frequent ringing in the ear and instability, and he doesn't doubt my spine disks slip in and out which is the popping I keep hearing. He also believes I have cervical instability which exaplains MIGRAINES!!! He added a referral to a EDS/migraine specialist to work on that. I would also have to drink Gatorade everyday because of POTS.
He went on to explain that once Hypermobility is diagnosed Ehlers-Diagnosed is officially diagnosed if the hypermobility is causing significant problems. He said "obviously in your case it is." UNDERSTATEMENT OF THE YEAR!!! With so many hypermobile joints he was surprised I've never dislocated anything and said I would have to wear a medical alert bracelet so special care would be taken in an emergency situation, "they may not know what EDS is but it will cause them to look it up in the book." LOL
However, the single most important statement that doctor said to me was, "day after day we get people like you come into our clinic having heard it all: lupus, arthritis, having surgeries that didn't help, intense pain, migraines, easy bruising, intestinal problems and its good to tell them that there is something that explains all of their symptoms. I bet you've also been told that it's all in your head, that you're just making it up, that its not that bad. The diagnosis doesn't change anything but its very much real. You also have to understand that the changes you're going to have to make are life-long."
I didn't know what I was feeling. I didn't know if I should cry, hug him, laugh....my brain was in shock! I was stuck in a moment of appreciation. Appreciation for his words. Appreciation for an answer. Appreciation for getting positive feelings back, if only for a moment.
So after the appointment I did what any reasonable girl who had just received life-changing news would do...I got a makeover! It was just at the Dior beauty counter at Kenwood but it felt FANTASTIC and I deserved it!
The bad news: Ian will be evaluated by the geneticist next Friday. Our primary care doctor diagnosed him with hypermobility and he's experiencing joint pain, skin rashes after being in the sun and he's already had 3 migraines this month (with loss of vision). I gave the geneticist a heads up about it. He already let me know that Ian would need to start physical therapy now to help avoid problems later, he'd also get evaluated by orthopedics because he has flat feet which is affecting his lower-back, and spine stability and may be contributing to the migraines. I think I may have to apply for Ian's SSDI too.
So here's what I'm looking at: life-long physical therapy for both of us (Ian at Children's, mine at CAST), rheumatology for both of us (Ian at Children's, mine at Norwood) MH therapy for both of us (different offices) management of Ian's Asperger's and Bipolar, orthopedics (possibly same doctor), migraine management for both of us (possibly same doctor), asthma management (same doctor), medication regimens for both of us, school catch up for Ian due to his appointments. LOTS and LOTS of medical appointments...going back to work???
After gathering information, the genetic counselor then meets with the geneticist for a couple of minutes prior to the doctor meeting with me. She gave him the "case history" and put him "up to speed". I could hear them speaking outside my door but I couldn't really make out much of the conversation. I started getting extremely anxious and I felt my heart drop. I couldn't answer the questions about my family history so I couldn't possibly have this, could I??? I had failed the test! This would be another dead end and I would go home with no answers...again.
The doctor came in the room and immediately put me at ease with his awkward geekiness and his huge smile. He reviewed with me what the genetic counselor had just explained to him (impressively accurate for just a 2 minute conversation!). He asked me to stretch a few joints. Then he showed me how my body was stretchy-bendy compared to his. WOW! This was something that I could do easily without gaving it a second thought, my surprise was that others COULD NOT bend that way. And here I thought I was such a wuss, I'M ELASTIGIRL!!! (Ironically, Mark does remind me of Mr. Incredible :)
The doctor then explained that to be diagnosed with Hypermobility, I needed to meet 5 out of 9 hypermobile joints: I had 8 out of 9. I didn't make the 9th because I couldn't put the flat of my palm (my fingers were flat on the floor) to the floor while bending over keeping my knees straight by just about .25 mm...I mean really!? Then he checked for additional hypermobile joints that are not part of the official diagnosis but cause symptoms nonetheless: jaw, knees, and fingers are hypermobile too. He also suspects my inner ear joints which cause frequent ringing in the ear and instability, and he doesn't doubt my spine disks slip in and out which is the popping I keep hearing. He also believes I have cervical instability which exaplains MIGRAINES!!! He added a referral to a EDS/migraine specialist to work on that. I would also have to drink Gatorade everyday because of POTS.
He went on to explain that once Hypermobility is diagnosed Ehlers-Diagnosed is officially diagnosed if the hypermobility is causing significant problems. He said "obviously in your case it is." UNDERSTATEMENT OF THE YEAR!!! With so many hypermobile joints he was surprised I've never dislocated anything and said I would have to wear a medical alert bracelet so special care would be taken in an emergency situation, "they may not know what EDS is but it will cause them to look it up in the book." LOL
However, the single most important statement that doctor said to me was, "day after day we get people like you come into our clinic having heard it all: lupus, arthritis, having surgeries that didn't help, intense pain, migraines, easy bruising, intestinal problems and its good to tell them that there is something that explains all of their symptoms. I bet you've also been told that it's all in your head, that you're just making it up, that its not that bad. The diagnosis doesn't change anything but its very much real. You also have to understand that the changes you're going to have to make are life-long."
I didn't know what I was feeling. I didn't know if I should cry, hug him, laugh....my brain was in shock! I was stuck in a moment of appreciation. Appreciation for his words. Appreciation for an answer. Appreciation for getting positive feelings back, if only for a moment.
So after the appointment I did what any reasonable girl who had just received life-changing news would do...I got a makeover! It was just at the Dior beauty counter at Kenwood but it felt FANTASTIC and I deserved it!
The bad news: Ian will be evaluated by the geneticist next Friday. Our primary care doctor diagnosed him with hypermobility and he's experiencing joint pain, skin rashes after being in the sun and he's already had 3 migraines this month (with loss of vision). I gave the geneticist a heads up about it. He already let me know that Ian would need to start physical therapy now to help avoid problems later, he'd also get evaluated by orthopedics because he has flat feet which is affecting his lower-back, and spine stability and may be contributing to the migraines. I think I may have to apply for Ian's SSDI too.
So here's what I'm looking at: life-long physical therapy for both of us (Ian at Children's, mine at CAST), rheumatology for both of us (Ian at Children's, mine at Norwood) MH therapy for both of us (different offices) management of Ian's Asperger's and Bipolar, orthopedics (possibly same doctor), migraine management for both of us (possibly same doctor), asthma management (same doctor), medication regimens for both of us, school catch up for Ian due to his appointments. LOTS and LOTS of medical appointments...going back to work???
Wednesday, May 9, 2012
Human existence
It's been a while but I haven't forgotten about my chronicle. Never! I've just had a few things happening between excruciating pain and having an electrode implanted in my stomach.
Going back approximately 6 weeks. I was having issues with my stomach (again) and despite the feeling of fullness, I decided to eat an apple because I had not eaten since breakfast and it was after 6pm. Costly mistake. I threw up for hours! Secondary to the "gastrointestinal distress" (as my son would say) I ended up injuring the muscles on the left side of my neck and shoulder due the stress of vomiting. My left neck and shoulder was left sensitive post-surgery, because it was the most impacted by the herniated discs, and now I get horrible spasm. So for the last 6 weeks I've had neck and shoulder spasms...HORRIBLE EXCRUCIATING spasms. I couldn't turn my neck or relax my shoulder. Heat and ice wouldn't help and physical therapy would only loosen it for a few hours.
A week ago, thinking the pain was as bad as it could possibly get, I took some pain medication, an opiate, hoping to get a little bit of relief. I don't use this type of medication often because of the risk of rebound migraines and because I'm prone to allergic reactions. Well.....I got an allergic reaction!!!
Yep. A full head to toe, red, itchy rash, palpitations, racing heart (125 bpm), high blood pressure (140/110) with shortness of breath. And that was AFTER 2 doses of 50 mg of Benadryl! I was hooked up to an EKG, had more Benadryl and some prednisone. At discharge my heart rate was still 100 bpm, and BP 130/100. I was sent home with instructions to use 50mg of Benadryl every 2-4 hours, a medrol dosepak and an EpiPen.
I was seriously wrong in thinking the pain couldn't possibly get any worse. 2 days later I was back at the doctor's office, because the thought of having to endure another hour, let alone another night with the pain, which was now spread down my back and arm made me nauseous and made me cry; I JUST COULDN'T TAKE IT ANYMORE!!! I had to hold my head up with my hands because I didn't think my neck could sustain my head up. I was told "No more pain meds for you. Your reaction was pretty significant and each time it will get worse. I don't know there's anything we can do for you." We finally reached an understanding about using muscle relaxers since a spasm was the core of the problem, rather than a pain med which would only have masked it anyway. I would also be able to follow up with the orthopedic surgeon in a week for a more thorough evaluation and treatment. Fortunately, I'm a well established patient and there was no question about the legitimacy of my condition and that I was not there as a "drug seeker" otherwise I might have been forced to take my life.
I do not make that last statement lightly. The amount of pain I was experiencing was utterly unbearable and incompatible with human existence even at its barest and most minimum. It was inhuman, cruel, vicious, maddening, destroyer of spirit, breaker of will. When faced with the thought of being an entity subjected to this torture for the rest of my life, my thoughts turned bleak and hopeless.
I am glad to say that the muscle relaxers have helped significantly but I have to take them on the hour without fail or I will pay for it! I still have a limited range of motion, am not able to carry much weight with my left arm (up to a water bottle), and I get hurt when I drive among other things. But the pain no longer feels unbearable. It's inconvenient, uncomfortable and sharp when I move or use those muscles the wrong way, but it's manageable.
I don't know what's down the road. I don't know if I can keep taking these muscle relaxers for a prolonged period of time. I don't know if there will be a process of degeneration or progression related to this syndrome and it scares me to think that this is what a life with Ehlers-Danlos will "feel" like for the rest of my life. But for now, I have "survived" and "endured" this "episode".
I continue to seek peace and listen
Going back approximately 6 weeks. I was having issues with my stomach (again) and despite the feeling of fullness, I decided to eat an apple because I had not eaten since breakfast and it was after 6pm. Costly mistake. I threw up for hours! Secondary to the "gastrointestinal distress" (as my son would say) I ended up injuring the muscles on the left side of my neck and shoulder due the stress of vomiting. My left neck and shoulder was left sensitive post-surgery, because it was the most impacted by the herniated discs, and now I get horrible spasm. So for the last 6 weeks I've had neck and shoulder spasms...HORRIBLE EXCRUCIATING spasms. I couldn't turn my neck or relax my shoulder. Heat and ice wouldn't help and physical therapy would only loosen it for a few hours.
A week ago, thinking the pain was as bad as it could possibly get, I took some pain medication, an opiate, hoping to get a little bit of relief. I don't use this type of medication often because of the risk of rebound migraines and because I'm prone to allergic reactions. Well.....I got an allergic reaction!!!
Yep. A full head to toe, red, itchy rash, palpitations, racing heart (125 bpm), high blood pressure (140/110) with shortness of breath. And that was AFTER 2 doses of 50 mg of Benadryl! I was hooked up to an EKG, had more Benadryl and some prednisone. At discharge my heart rate was still 100 bpm, and BP 130/100. I was sent home with instructions to use 50mg of Benadryl every 2-4 hours, a medrol dosepak and an EpiPen.
I was seriously wrong in thinking the pain couldn't possibly get any worse. 2 days later I was back at the doctor's office, because the thought of having to endure another hour, let alone another night with the pain, which was now spread down my back and arm made me nauseous and made me cry; I JUST COULDN'T TAKE IT ANYMORE!!! I had to hold my head up with my hands because I didn't think my neck could sustain my head up. I was told "No more pain meds for you. Your reaction was pretty significant and each time it will get worse. I don't know there's anything we can do for you." We finally reached an understanding about using muscle relaxers since a spasm was the core of the problem, rather than a pain med which would only have masked it anyway. I would also be able to follow up with the orthopedic surgeon in a week for a more thorough evaluation and treatment. Fortunately, I'm a well established patient and there was no question about the legitimacy of my condition and that I was not there as a "drug seeker" otherwise I might have been forced to take my life.
I do not make that last statement lightly. The amount of pain I was experiencing was utterly unbearable and incompatible with human existence even at its barest and most minimum. It was inhuman, cruel, vicious, maddening, destroyer of spirit, breaker of will. When faced with the thought of being an entity subjected to this torture for the rest of my life, my thoughts turned bleak and hopeless.
I am glad to say that the muscle relaxers have helped significantly but I have to take them on the hour without fail or I will pay for it! I still have a limited range of motion, am not able to carry much weight with my left arm (up to a water bottle), and I get hurt when I drive among other things. But the pain no longer feels unbearable. It's inconvenient, uncomfortable and sharp when I move or use those muscles the wrong way, but it's manageable.
I don't know what's down the road. I don't know if I can keep taking these muscle relaxers for a prolonged period of time. I don't know if there will be a process of degeneration or progression related to this syndrome and it scares me to think that this is what a life with Ehlers-Danlos will "feel" like for the rest of my life. But for now, I have "survived" and "endured" this "episode".
I continue to seek peace and listen
Wednesday, April 25, 2012
Limbo or waiting game
I seem to be in a limbo of sorts. I kind of waiting game right now. Maybe this is part of the stillness I'm supposed to be in, part of the trust in God I'm supposed to experience. Some of the things I'm waiting for are the disability process to take place, to meet the disability lawyer, for the first disability approval/denial letter, the first appeal, the second appeal. Hopefully, I don't have to go through all of that and the Universe has already conspired so that it is approved of in the first instance. Being sick is extremely expensive. Thankfully, my family has been blessed and we have been able to manage so far.
I'm also waiting for the appointment with the geneticist. I have mixed feelings about that appointment. I'm ambivalent with a little tinge of avoidance, but truthfully, I'm scared. I'm scared because all my my hopes are riding on him, on this appointment. No one wants to be diagnosed with a painful illness with no cure and virtually no treatment. I certainly don't. But anyone would want to know the name and face of what has been hurting them for so long. Once you know the name of your opponent it isn't as scary and healing can begin: physically, mentally and spiritually. However, if all my hopes are resting on this doctor and diagnosis, what will happen if its negative? At times, I feel like I don't want to see the doctor because it will be final, I either have it or I don't. But while I'm in the limbo there's the possibility that my joint pain, my headaches, my stomach problems could be caused by this mystery syndrome and there's a certain hope in that state of uncertainty. Of course I am going to my appointment, I need and want to know one way or another. I have to admit, there is also a certain amount of hope and relief in looking forward to finally having a diagnosis. I'll cross the "what if" bridge if I get to it.
I also have to wait for my appointment to have a numbing treatment in my lower back. Unfortunately, the first series doesn't usually work so I have to have second series before I start getting relief. More waiting.
This creates more waiting regarding returning to work. That's a real quandary. I don't know what will happen there. I just graduated form a very expensive school, in the career I have always dreamed of, working with the population I want, immediately working at a good agency, with great supervisors. That is a very rare thing! Am I throwing all of that away? Could I work 1-2 hours a day and see what happens? What if I can't keep up? What about do no harm? I get exhausted just from going to the grocery store! It would be irresponsible of me to take clients on and have to leave them because I can't keep up. I've had 3 doctors and a doctor in physical therapy tell me I can't work and have to go on disability. I experience a great deal of anxiety thinking about how to solve this situation on my own, cognitively. I churn it, twist it, add it, subtract it, multiply and divide it and cannot see its answer from where I'm at right now. All I see is joint pain, back pain, fatigue, migraines, nausea, stomach pain, juggling doctors appointments, therapy appointments, pills, pills and more pills. I don't see a clear solution. I think this is one I have to place in the hands of my Higher Power and trust that he will make the path clear in a manner that will be best for all in involved.
I am fortunate as my husband has been extremely supportive and has not added pressure related to getting back to work, getting a diagnosis, medical bills, housework, dishes, dinner or our weed infested yard. It can always be done tomorrow or doesn't need to be done at all. He encourages me to take a break, reminds me of things often because he knows that I'll forget and even does the grocery shopping because I can't.
In this time of stillness, this limbo, I continue to seek peace and listen for answers.
I'm also waiting for the appointment with the geneticist. I have mixed feelings about that appointment. I'm ambivalent with a little tinge of avoidance, but truthfully, I'm scared. I'm scared because all my my hopes are riding on him, on this appointment. No one wants to be diagnosed with a painful illness with no cure and virtually no treatment. I certainly don't. But anyone would want to know the name and face of what has been hurting them for so long. Once you know the name of your opponent it isn't as scary and healing can begin: physically, mentally and spiritually. However, if all my hopes are resting on this doctor and diagnosis, what will happen if its negative? At times, I feel like I don't want to see the doctor because it will be final, I either have it or I don't. But while I'm in the limbo there's the possibility that my joint pain, my headaches, my stomach problems could be caused by this mystery syndrome and there's a certain hope in that state of uncertainty. Of course I am going to my appointment, I need and want to know one way or another. I have to admit, there is also a certain amount of hope and relief in looking forward to finally having a diagnosis. I'll cross the "what if" bridge if I get to it.
I also have to wait for my appointment to have a numbing treatment in my lower back. Unfortunately, the first series doesn't usually work so I have to have second series before I start getting relief. More waiting.
This creates more waiting regarding returning to work. That's a real quandary. I don't know what will happen there. I just graduated form a very expensive school, in the career I have always dreamed of, working with the population I want, immediately working at a good agency, with great supervisors. That is a very rare thing! Am I throwing all of that away? Could I work 1-2 hours a day and see what happens? What if I can't keep up? What about do no harm? I get exhausted just from going to the grocery store! It would be irresponsible of me to take clients on and have to leave them because I can't keep up. I've had 3 doctors and a doctor in physical therapy tell me I can't work and have to go on disability. I experience a great deal of anxiety thinking about how to solve this situation on my own, cognitively. I churn it, twist it, add it, subtract it, multiply and divide it and cannot see its answer from where I'm at right now. All I see is joint pain, back pain, fatigue, migraines, nausea, stomach pain, juggling doctors appointments, therapy appointments, pills, pills and more pills. I don't see a clear solution. I think this is one I have to place in the hands of my Higher Power and trust that he will make the path clear in a manner that will be best for all in involved.
I am fortunate as my husband has been extremely supportive and has not added pressure related to getting back to work, getting a diagnosis, medical bills, housework, dishes, dinner or our weed infested yard. It can always be done tomorrow or doesn't need to be done at all. He encourages me to take a break, reminds me of things often because he knows that I'll forget and even does the grocery shopping because I can't.
In this time of stillness, this limbo, I continue to seek peace and listen for answers.
Friday, April 13, 2012
Without saying a word
I've written about my faith in the past. I've been relying on it a lot lately and have been letting myself be guided by it. Maybe because I'm exhausted of hitting dead-ends, maybe because I have to believe there is something more, maybe because I just need to be believe in something. No matter what the reason, I've allowed a complete surrender of myself and my fate. I've allowed a complete breakdown of my walls come what may. Sometimes that breakdown comes with tears while on my knees. Sometimes it comes in the form of a conversation with a higher power, with God, as I'm driving my car. It doesn't matter how it comes, I just let it flow and trust that I will be taken care of no matter what my fate is, and that I will be directed in whatever my path should be. I should just be still.
Ironically, or maybe purposefully, in this stillness I have had two breakthroughs. They may be minor to the external world but they are satisfying and validating to my internal world. They give me hope and peace and they allow me even more stillness. They show me how I'm being taken care of by The Force, The Universe, My God while all I am doing is taking the time to take care of me, being still and looking to be at peace.
The first came when my therapist stated that she believed my symptoms were not psychosomatic. She stated that she "truly believed" they were organic in nature. She also believed the manifestation of depression was dual in nature, partly organic, that is depression caused by whatever disease was causing the physical symptoms, and partly mood related, that is as a result of coping with the organic disease and chronic pain. This was huge! This was something I knew in my core to be true but could could never, in a million years, make anyone believe could be possible, let alone someone in the medical or allied fields. And now I find a person reflecting my inner thoughts and feelings without my having verbalized them! I felt like crying, screaming, jumping, shaking...but I had no words, I was frozen, paralyzed because I could not believe that someone understood. Someone...finally...began...to understand, to see through to my core. And I didn't have to say a single word.
The second breakthrough came while visiting my primary care doctor. It was actually a visit for my son but he looked over some records that had come in for me because he calls me "his special patient". He suddenly stopped and got the light bulb look in his eye. He asked me a few questions, had me do a couple of movements and tested the elasticity of my skin. He said "I think you have Ehlers-Danlos Syndrome. I can't believe I missed it before. It explains every single stinking symptom you have from the headaches to the degeneration in your spine." He went on to state things like, "you hurt all the time and people thing you're just a whiner. You hurt and you don't know why you hurt. They tell you its just in your head, that you're just anxious and depressed which makes you anxious and depressed. Your stomach doesn't work right." He explained that EDS is a degenerative disorder in which the body stops producing protein and collagen necessary for the muscles and joints. Joints are extremely flexible and makes the prone to dislocations. They also pretty much hurt all the time for no reason, and they hurt a lot. He said "I would diagnose with EDS right now. You fit the criteria. I still want you to see a geneticist so he can confirm it." As terrible as the diagnosis is, it was still affirming. It was real. He believed me. And I never had to say a word. He externalized what I knew in my core to be true, and that felt good. It felt life-affirming....ironically, because EDS is not the diagnosis a person wants to hear.
However, having a name for what ails me gives it a face so I feel I can fight against it. I can treat it like the enemy, I can treat it like my new normal. There is a protocol for it versus shooting blind and seeing what sticks. But, it is early. In the meantime, I will continue to be still. I will continue to trust. I will continue to look for peace.
Ironically, or maybe purposefully, in this stillness I have had two breakthroughs. They may be minor to the external world but they are satisfying and validating to my internal world. They give me hope and peace and they allow me even more stillness. They show me how I'm being taken care of by The Force, The Universe, My God while all I am doing is taking the time to take care of me, being still and looking to be at peace.
The first came when my therapist stated that she believed my symptoms were not psychosomatic. She stated that she "truly believed" they were organic in nature. She also believed the manifestation of depression was dual in nature, partly organic, that is depression caused by whatever disease was causing the physical symptoms, and partly mood related, that is as a result of coping with the organic disease and chronic pain. This was huge! This was something I knew in my core to be true but could could never, in a million years, make anyone believe could be possible, let alone someone in the medical or allied fields. And now I find a person reflecting my inner thoughts and feelings without my having verbalized them! I felt like crying, screaming, jumping, shaking...but I had no words, I was frozen, paralyzed because I could not believe that someone understood. Someone...finally...began...to understand, to see through to my core. And I didn't have to say a single word.
The second breakthrough came while visiting my primary care doctor. It was actually a visit for my son but he looked over some records that had come in for me because he calls me "his special patient". He suddenly stopped and got the light bulb look in his eye. He asked me a few questions, had me do a couple of movements and tested the elasticity of my skin. He said "I think you have Ehlers-Danlos Syndrome. I can't believe I missed it before. It explains every single stinking symptom you have from the headaches to the degeneration in your spine." He went on to state things like, "you hurt all the time and people thing you're just a whiner. You hurt and you don't know why you hurt. They tell you its just in your head, that you're just anxious and depressed which makes you anxious and depressed. Your stomach doesn't work right." He explained that EDS is a degenerative disorder in which the body stops producing protein and collagen necessary for the muscles and joints. Joints are extremely flexible and makes the prone to dislocations. They also pretty much hurt all the time for no reason, and they hurt a lot. He said "I would diagnose with EDS right now. You fit the criteria. I still want you to see a geneticist so he can confirm it." As terrible as the diagnosis is, it was still affirming. It was real. He believed me. And I never had to say a word. He externalized what I knew in my core to be true, and that felt good. It felt life-affirming....ironically, because EDS is not the diagnosis a person wants to hear.
However, having a name for what ails me gives it a face so I feel I can fight against it. I can treat it like the enemy, I can treat it like my new normal. There is a protocol for it versus shooting blind and seeing what sticks. But, it is early. In the meantime, I will continue to be still. I will continue to trust. I will continue to look for peace.
Sunday, April 8, 2012
Well it happened
Yep. What I said would with the Cymbalta, happened. And then some! It almost killed me!
It was my 7th day exactly on Cymbalta. All week I had flu-like symptoms as in aches and pains, but no fever or runny nose. Every day I had a headache. But on the 7th day I got a vicious migraine that crippled me and felt like my right lobe was cracking. I started treating with an Imitrex shot. It seemed to work early on allowing me to go through the activities of the day. But by early afternoon I was useless. I couldn't even enjoy Judge Judy! I took the second Imitrex shot and it was the same as nothing, I might as well have avoided trouble and expense of the shot altogether. I took two Tylenol just to feel I was attempting to obtain some relief.
By 8pm I had iced down my head and was working on my second ice pack and decided I needed to move onto something stronger so I took a morphine and a Robaxin. Mark was rubbing my head and covering my eyes to help keep the light out. Finally, I was able to get some relief and fell asleep, with the icepack under my right lobe.
The next day, I still had a migraine although not quite as vicious but still crippling. I moved to Frova just to try something different and longer acting in treating the migraine. It took half the day to take effect, but by early afternoon I was pain free. However, I still had the flu-like symptoms, but other than feeling warm to the touch, I didn't have a fever. I also had difficulty swallowing and it was painful to swallow, it felt as if there was something stuck. I also had a blood spot in my eye. I did sleep most of the day, whether due to the flu-like feeling, or the migraine.
I don't want to think of what would have happened if I had taken the Cymbalta one more night. I just think, thank goodness! I know there will be several doctors or so called specialists saying maybe I did have the flu, or maybe it was something else or maybe, maybe, maybe... Well, I say to them, maybe its the Cymbalta! In fact, I KNOW its the Cymbalta, becuase EVERY time I take a SSRI or SNRI I get sick! And after this I say its progressively getting worse!
Nobody knows more about me than me!
It was my 7th day exactly on Cymbalta. All week I had flu-like symptoms as in aches and pains, but no fever or runny nose. Every day I had a headache. But on the 7th day I got a vicious migraine that crippled me and felt like my right lobe was cracking. I started treating with an Imitrex shot. It seemed to work early on allowing me to go through the activities of the day. But by early afternoon I was useless. I couldn't even enjoy Judge Judy! I took the second Imitrex shot and it was the same as nothing, I might as well have avoided trouble and expense of the shot altogether. I took two Tylenol just to feel I was attempting to obtain some relief.
By 8pm I had iced down my head and was working on my second ice pack and decided I needed to move onto something stronger so I took a morphine and a Robaxin. Mark was rubbing my head and covering my eyes to help keep the light out. Finally, I was able to get some relief and fell asleep, with the icepack under my right lobe.
The next day, I still had a migraine although not quite as vicious but still crippling. I moved to Frova just to try something different and longer acting in treating the migraine. It took half the day to take effect, but by early afternoon I was pain free. However, I still had the flu-like symptoms, but other than feeling warm to the touch, I didn't have a fever. I also had difficulty swallowing and it was painful to swallow, it felt as if there was something stuck. I also had a blood spot in my eye. I did sleep most of the day, whether due to the flu-like feeling, or the migraine.
I don't want to think of what would have happened if I had taken the Cymbalta one more night. I just think, thank goodness! I know there will be several doctors or so called specialists saying maybe I did have the flu, or maybe it was something else or maybe, maybe, maybe... Well, I say to them, maybe its the Cymbalta! In fact, I KNOW its the Cymbalta, becuase EVERY time I take a SSRI or SNRI I get sick! And after this I say its progressively getting worse!
Nobody knows more about me than me!
Monday, April 2, 2012
Guilt, worthlessness and hope
So what has been going on...feelings guilt and worthlessness. I feel guilty because I'm not working and I see Mark get up everyday and go to work. And I see the boys wake up early and go to school. Meanwhile I stay home. I realize lots of stay-at-home mothers do this, but these families have chosen to have stay-at-home mothers and its usually when the children are young, not when they are 15 and 17.
!feel guilty because I can't even keep up with the house work most of the time, or even with the cooking. The boys help me a lot with that. I feel guilty because I've gotten an expensive education and I'm not really making use of it. I feel guilty because I had a good career and I feel it slipping it through my hands but I can't reach out and grab it. I feel guilty and worthless when I can't drive Jan to band practice and can't drive myself around because of the migraine auras. I feel worthless on days when I think of going back to work, or cleaning and cooking and know that I can't because something or everything hurts. I feel guilty because I'm depressed.
I feel a little less guilty when I'm able to cook a nice meal for Mark. I feel a little less worthless when I'm able to clean at least one room in the house, or fold the laundry. I feel a little less worthless when I'm able to put on some eyeliner and lipstick because my depression isn't as crippling that day.
I was recently told that I need to engage in some type of creative activity because I have too much "stagnated trauma". She doesn't know the half of it! I was told that I need to "act as if" to help my depression lift. I'm not adverse to trying creative outlets but planning attending an activity can be difficult. The boys can't be left alone together in the house and I can't always drive.
Then I started thinking about what activity I would like to do, what it is that I would really enjoy doing if I were going to commit to something. I wouldn't mind taking an art class. I also know of cake decorating classes nearby, even if I never decorate a cake in my life. But what I would really truly want to do, is take a creative writing class! That would truly give flight to my spirit and open windows into my soul.
I feel guilty that I want to take a writing class, or an art class, or cake decorating class. I feel worthless that with my level education that is what I have been reduced to.
But giving flight to my spirit.......it almost gives me hope.
!feel guilty because I can't even keep up with the house work most of the time, or even with the cooking. The boys help me a lot with that. I feel guilty because I've gotten an expensive education and I'm not really making use of it. I feel guilty because I had a good career and I feel it slipping it through my hands but I can't reach out and grab it. I feel guilty and worthless when I can't drive Jan to band practice and can't drive myself around because of the migraine auras. I feel worthless on days when I think of going back to work, or cleaning and cooking and know that I can't because something or everything hurts. I feel guilty because I'm depressed.
I feel a little less guilty when I'm able to cook a nice meal for Mark. I feel a little less worthless when I'm able to clean at least one room in the house, or fold the laundry. I feel a little less worthless when I'm able to put on some eyeliner and lipstick because my depression isn't as crippling that day.
I was recently told that I need to engage in some type of creative activity because I have too much "stagnated trauma". She doesn't know the half of it! I was told that I need to "act as if" to help my depression lift. I'm not adverse to trying creative outlets but planning attending an activity can be difficult. The boys can't be left alone together in the house and I can't always drive.
Then I started thinking about what activity I would like to do, what it is that I would really enjoy doing if I were going to commit to something. I wouldn't mind taking an art class. I also know of cake decorating classes nearby, even if I never decorate a cake in my life. But what I would really truly want to do, is take a creative writing class! That would truly give flight to my spirit and open windows into my soul.
I feel guilty that I want to take a writing class, or an art class, or cake decorating class. I feel worthless that with my level education that is what I have been reduced to.
But giving flight to my spirit.......it almost gives me hope.
Friday, March 30, 2012
Identifying the ideal support
The last few days I have taken time to meditate on what course of action, or in-action, I think would be best from here on. I know I'm tired of explaining myself to doctors. Explaining that SSRI's cause side effects and that I'm allergic to opiates, and that no I do not take pain medications despite my pain, no really I DON'T TAKE PAIN MEDS!!! That led me to think about what has been sustaining through this experience. I have my faith in God. I have my family. And, I am attending counseling. Being a counselor I think that is the least I could do. I have also had support from several of my classmates who are also counselors.
I was recently in communication with a friend, a classmate, and she told me about a career opportunity she is being offered in which she'll have a private office and will partner with a pain management clinic. What are the chances, right? I thought it was pretty cool that she would be able to incorporate her counseling degree, with her eastern holistic practices while working in tandem with the western pain management office. What a fabulous idea! Why don't other pain management offices do this? She's a terrific counselor, a quick thinker and very resourceful. But, she's also genuine in letting a person know "this must be horrible for you!" and "tell me about it" and "do you have a support system" and that's when her ideas kick in!
She was a little scared after learning about my experience and wondered if she would be strong enough to help someone like me. That made me think what I, and I think any pain patient, would want the ideal counselor to offer them. Counselor to counselor, I would tell her, think of the core conditions and you're offering us the perfect experience. To the layperson it translates as:
1) We want to be listened to, genuinely. We don't want to lay these burdens at the feet of our family because they already feel helpless that they can't take our pain away and make us feel better. ~ Men feel especially helpless because they are so used to "fixing" problems and being done with them. These are not easy fixes like taking the garbage out or doing the dishes. ~ We often have to hide the pain from our children, no matter how bad it gets, or we have to miss out on family functions, which brings on guilt. We have to feel that its ok, that someone forgives us and that despite that our kids will turn out ok, we're just doing our best. ~ Women are generally caregivers and can suffer burnout from helping their partner through this experience in addition to carrying household duties. ~ A marriage can suffer if the couple does not keep sight that they are a team and are both working against the pain. They need to make time for each other, even if its just movie night at home while the kids are asleep or at grandmas. If they can't have sex, intimacy can still be found in any form that is still acceptable to both. It can be in the form of "snuggling" or just talking while looking at each other in the eyes. However, this cannot be one-sided experience, the person with the pain needs support and the partner will start building resentment.
2) To be believed. We are told so often by the medical community "it can't be that bad", that we just need to "loose weight and exercise more", or were just "depressed and anxious" which then makes us depressed and anxious. All the while we know we are hurting and the pain is real. Honestly, we are more likely to follow all of the previous advice from someone we feel is on our side and coming from a place that is caring, rather than from a place of judgment or "non-belief". Let our time with you be our sacred time where you trust us and allow us our grief for the life we have to mourn, and the life we have to adjust to because it is our new "normal".
3) To be witnessed. We want to be seen as a human being. Remind us that we are a person, a human being, and have the right to be live normal lives. See us. Not a patient, or a number, and not even as a compilation of our multiple pains, conditions, medications. Remind is that we can start by "living one day at a time and if that's too much, then 1 hour at a time". Slowly, gently, tell us that we can start with small steps like painting out nails one day, then lipstick the next, changing out of our sweatpants, washing our hair, shaving. . But, we want to be reminded, praised, and noticed for those minor changes and moments of growth that we do make. And, if we don't, its okay, you trust that we will make them when we're ready. We are not being judged.
I've heard that statement "one day at a time, and if that's too much one hour at a time" from two different people involved in my care, they had no connection to each other, and its had the most impact for me. It helps me get the dishes done, get make-up on, sometimes run errands, and sometimes not, because I just can't do anything at all. And I know its okay. I think maybe my angels sent me that message.
I know my friend will be great.
I was recently in communication with a friend, a classmate, and she told me about a career opportunity she is being offered in which she'll have a private office and will partner with a pain management clinic. What are the chances, right? I thought it was pretty cool that she would be able to incorporate her counseling degree, with her eastern holistic practices while working in tandem with the western pain management office. What a fabulous idea! Why don't other pain management offices do this? She's a terrific counselor, a quick thinker and very resourceful. But, she's also genuine in letting a person know "this must be horrible for you!" and "tell me about it" and "do you have a support system" and that's when her ideas kick in!
She was a little scared after learning about my experience and wondered if she would be strong enough to help someone like me. That made me think what I, and I think any pain patient, would want the ideal counselor to offer them. Counselor to counselor, I would tell her, think of the core conditions and you're offering us the perfect experience. To the layperson it translates as:
1) We want to be listened to, genuinely. We don't want to lay these burdens at the feet of our family because they already feel helpless that they can't take our pain away and make us feel better. ~ Men feel especially helpless because they are so used to "fixing" problems and being done with them. These are not easy fixes like taking the garbage out or doing the dishes. ~ We often have to hide the pain from our children, no matter how bad it gets, or we have to miss out on family functions, which brings on guilt. We have to feel that its ok, that someone forgives us and that despite that our kids will turn out ok, we're just doing our best. ~ Women are generally caregivers and can suffer burnout from helping their partner through this experience in addition to carrying household duties. ~ A marriage can suffer if the couple does not keep sight that they are a team and are both working against the pain. They need to make time for each other, even if its just movie night at home while the kids are asleep or at grandmas. If they can't have sex, intimacy can still be found in any form that is still acceptable to both. It can be in the form of "snuggling" or just talking while looking at each other in the eyes. However, this cannot be one-sided experience, the person with the pain needs support and the partner will start building resentment.
2) To be believed. We are told so often by the medical community "it can't be that bad", that we just need to "loose weight and exercise more", or were just "depressed and anxious" which then makes us depressed and anxious. All the while we know we are hurting and the pain is real. Honestly, we are more likely to follow all of the previous advice from someone we feel is on our side and coming from a place that is caring, rather than from a place of judgment or "non-belief". Let our time with you be our sacred time where you trust us and allow us our grief for the life we have to mourn, and the life we have to adjust to because it is our new "normal".
3) To be witnessed. We want to be seen as a human being. Remind us that we are a person, a human being, and have the right to be live normal lives. See us. Not a patient, or a number, and not even as a compilation of our multiple pains, conditions, medications. Remind is that we can start by "living one day at a time and if that's too much, then 1 hour at a time". Slowly, gently, tell us that we can start with small steps like painting out nails one day, then lipstick the next, changing out of our sweatpants, washing our hair, shaving. . But, we want to be reminded, praised, and noticed for those minor changes and moments of growth that we do make. And, if we don't, its okay, you trust that we will make them when we're ready. We are not being judged.
I've heard that statement "one day at a time, and if that's too much one hour at a time" from two different people involved in my care, they had no connection to each other, and its had the most impact for me. It helps me get the dishes done, get make-up on, sometimes run errands, and sometimes not, because I just can't do anything at all. And I know its okay. I think maybe my angels sent me that message.
I know my friend will be great.
Friday, March 23, 2012
This is it. This is my life.
I've allowed myself time to mourn. I don't know how long it will last but I feel I deserve it. Its not self-pity, its an adjustment period since I have to get used to the idea that I have exhausted all avenues towards healing and hit dead-ends. Yes, I have tried eastern-healing methods: chiropractic, massage therapy, trigger point-therapy (and they have both been so excruciatingly painful that I haven't been able to continue), supplements, meditation, hypnotherapy, even past life regression...you name it, I've tried it.
Yesterday, through swollen eyes, and through teary prayers, I know that God was sending angels my way to let me know that he had not abandoned me. That even this, he was with me. I heard him in the song playing on the radio, in the words of a friend over the phone, in the message of another friend on Facebook, and in the message in a little magazine that I had postponed reading until yesterday. Even the title rings true. It goes like this:
There is no place else to get to and no other place you are supposed to be.
Honest.
This is it. Really. Your Life. Your own Life.
It might not look like you thought it would.
It might not feel like you wish it did.
But it is yours.
And so the question is...
What is stopping you from occupying it?
What story are you telling yourself about why you don't pitch a tent in your heart
and demand the truth about you aren't looking in the places where you are being
unjust to yourself?
What are you telling yourself about why you won't claim your life as it is...
Now? Instead of waiting for something else, better, more brighter, to happen.
What does it mean to occupy one's life?
What does it mean to truly LIVE in one's own body?
What does it mean to truly LOVE even when you are hurt?
What does it mean to have compassion when you yourself are feeling like a victim?
I want to know...what does it mean to you? To occupy your great life?
And Yes you can choose for it to be a great one, even with how it is right now.
What it means to me is that I live like I am living.
Instead of living like I am dying.
Even on days when it feels like my heart will never drop its oldest scabs and reveal
new skin.
What it means to me is to keep finding the YES in every single day.
To become present as often as possible and look around.
To live the questions.
To keep my hands in creation, in paint, in prayer, in poetry.
To stand with my sisters and brothers who occupy the world
with out chants and tears and trusts.
And to no matter what, to give my great work.
Whatever my great work is in each day.
To live it. To give it.
I want to occupy my life as I belong to it and it belongs to me.
There is nothing else that needs to happen in order to say...
I am doing it now.
The only thing we have to do is choose and keep on choosing.
Though rumor has it, it is easier to choose your life in the company of companions
who can say--Yes, I see you. Yes, I hear you. Yes, you are doing it.
Finally,
we remember that life is good after all and still on our side.
Even when the outlook is grim we have some understanding
that we are a part of a great unfolding. A mystery.
And that no matter how bad it gets, our response is still the same...
we have to keep on living and loving and giving and breathing.
And eventually,
not too far away we find we are willing to admit
through surrendering our old sorry identity that we are living it right now.
This is it.
In all its glory and all its mess and all the grace given and received.
We belong to life. An life belongs to us.
Amen!
Yesterday, through swollen eyes, and through teary prayers, I know that God was sending angels my way to let me know that he had not abandoned me. That even this, he was with me. I heard him in the song playing on the radio, in the words of a friend over the phone, in the message of another friend on Facebook, and in the message in a little magazine that I had postponed reading until yesterday. Even the title rings true. It goes like this:
Everyone has a story worth sharing
My Journey
Occupy Your Life
by Shiloh Sophia
Whole Living Journal
There is no place else to get to and no other place you are supposed to be.
Honest.
This is it. Really. Your Life. Your own Life.
It might not look like you thought it would.
It might not feel like you wish it did.
But it is yours.
And so the question is...
What is stopping you from occupying it?
What story are you telling yourself about why you don't pitch a tent in your heart
and demand the truth about you aren't looking in the places where you are being
unjust to yourself?
What are you telling yourself about why you won't claim your life as it is...
Now? Instead of waiting for something else, better, more brighter, to happen.
What does it mean to occupy one's life?
What does it mean to truly LIVE in one's own body?
What does it mean to truly LOVE even when you are hurt?
What does it mean to have compassion when you yourself are feeling like a victim?
I want to know...what does it mean to you? To occupy your great life?
And Yes you can choose for it to be a great one, even with how it is right now.
What it means to me is that I live like I am living.
Instead of living like I am dying.
Even on days when it feels like my heart will never drop its oldest scabs and reveal
new skin.
What it means to me is to keep finding the YES in every single day.
To become present as often as possible and look around.
To live the questions.
To keep my hands in creation, in paint, in prayer, in poetry.
To stand with my sisters and brothers who occupy the world
with out chants and tears and trusts.
And to no matter what, to give my great work.
Whatever my great work is in each day.
To live it. To give it.
I want to occupy my life as I belong to it and it belongs to me.
There is nothing else that needs to happen in order to say...
I am doing it now.
The only thing we have to do is choose and keep on choosing.
Though rumor has it, it is easier to choose your life in the company of companions
who can say--Yes, I see you. Yes, I hear you. Yes, you are doing it.
Finally,
we remember that life is good after all and still on our side.
Even when the outlook is grim we have some understanding
that we are a part of a great unfolding. A mystery.
And that no matter how bad it gets, our response is still the same...
we have to keep on living and loving and giving and breathing.
And eventually,
not too far away we find we are willing to admit
through surrendering our old sorry identity that we are living it right now.
This is it.
In all its glory and all its mess and all the grace given and received.
We belong to life. An life belongs to us.
Amen!
Thursday, March 22, 2012
Dis-appointment
The day before my appointment a friend emailed me and in her email she wrote "I hope you find what you are looking for at Cleveland Clinic". That made me stop and think. What was I looking for? Was I expecting a magic pill? Was I looking for them to think of one more diagnostic test that no one else had thought of that would shed light on what has happening in my head? was I looking for them to think of some "House" like diagnosis or treatment? I decided that what I was looking for was relief. I was looking for at least 1 of my many pains to decrease or subside. I often pray for it. I often cry and pray for it at the same time when it just becomes so overwhelming that I haven't slept for days, and can't sit, stand, open a jar, read a book...can't think or stop crying. That's what I wanted to find.
So yesterday I went to my appointment at Cleveland Clinic with my friend's statement in mind. I was not expecting a magic pill or one-step fix all, but I was wanting some recommendations and insight that would lead to the relief of 1 of my pains. The 1 pain that at this time is not degenerative in nature and is "benign". When I walked in the doctor's office, the first words from her mouth were "I don't have a magic pill, or magic bullet for you. In fact your chronic daily headaches may never go away." WHAT??? What just came out of this woman's mouth??? NEVER GO AWAY??? She said a multidisciplinary program would work best for me...okay, I was with her so far. She said, "first we take you off of ALL of your medications, from Tylenol to Methotrexate." NOT GOING TO HAPPEN! "Then we put you on an antidepressant." KEEP DREAMING!
I listened to every word she said. She did not hear a single word I said. It didn't matter how many times I explained to her that SSRI's make me sick because of Serotonin Syndrome she insisted that I had to be on it. She asked what symptoms I had when on the SSR's, I would explain it was pull my hair out, vomit, go to the ER at the very first dose, sick (classic SS symptoms), she still insisted. Even though my doctor gave her a list of the all the ones that had been tried with the same results, she insisted that I had to be on it. Did I mention Serotonin Syndrome is potentially fatal?
Then we have the methotrexate she would discontinue. It is helping and because of it I am able to move my hands, wrists and knees (as long as there isn't a storm or its not too cold). It is supposed to slow the progression of the degeneration of my spine. She looked at an x-ray done at the Cleveland Clinic and stated "there's nothing there, just some mild degeneration and arthritis". Excuse me did you just use the word DEGENERATION and MILD? Yeah, that's how the one in my neck started. The idea is for it to NOT DEGENRATE!!! Flexeril is absolutely necessary or my spine would not move AT ALL. Asthma? I've had it since I was born and it has improved since I have been on the methotrexate. I haven't had a single sinus infection, or asthmatic episode.This might indicate there was an underlying autoimmune response that triggered it and the methotrexate isdecreasing that. Also, a doctor at THE CLEVELAND CLINIC, had a RULE IN of seronegative Lupus! Get your act together people! Get on the same page.
I will say, I wasn't opposed to not using Robaxin and morphine. However, I just had major surgery 3 months ago so it is not unreasonable for me to still have some pain, and that's what these two medicines are for. Therefore, they will naturally be eliminated as I recover from the surgery. But, we still have to solve the mystery of the continuous auras that began when I started physical therapy, and the why when I have physical therapy I get migraines that rank a 10 out of 10 on the pain scale.
So all in all, my visit to the Clinic was a disappointment; a dis-appointment. I left feeling hopeless and I have been crying since last night, at every interval that I can be out of the boys' sight. Today I'm having a real tear fest and I'm so glad that I'm home alone so I can really let it out. Its very cathartic, and I have insight when I emerge. However, I can't help but feeling hurt at the doctor's attitude and lack of empathy for real and genuine pain that I, and no doubt others, feel when they come to seek help. I realize its a headache clinic but when there are multiple conditions that need to be treated simultaneously then a TRULY multidisciplinary treatment plan with these other factors in mind needs to be created. Having tunnel vision is not in the patient's best interest, and frankly, seems reckless.
So, as the song goes, and with my friend's statement in mind: I still haven't found what I'm looking for. I'm tired. Tired of doctors. Tired of explaining myself. Tired of hurting. Tired of crying. So for now, I just want to rest, be still and breathe.
So yesterday I went to my appointment at Cleveland Clinic with my friend's statement in mind. I was not expecting a magic pill or one-step fix all, but I was wanting some recommendations and insight that would lead to the relief of 1 of my pains. The 1 pain that at this time is not degenerative in nature and is "benign". When I walked in the doctor's office, the first words from her mouth were "I don't have a magic pill, or magic bullet for you. In fact your chronic daily headaches may never go away." WHAT??? What just came out of this woman's mouth??? NEVER GO AWAY??? She said a multidisciplinary program would work best for me...okay, I was with her so far. She said, "first we take you off of ALL of your medications, from Tylenol to Methotrexate." NOT GOING TO HAPPEN! "Then we put you on an antidepressant." KEEP DREAMING!
I listened to every word she said. She did not hear a single word I said. It didn't matter how many times I explained to her that SSRI's make me sick because of Serotonin Syndrome she insisted that I had to be on it. She asked what symptoms I had when on the SSR's, I would explain it was pull my hair out, vomit, go to the ER at the very first dose, sick (classic SS symptoms), she still insisted. Even though my doctor gave her a list of the all the ones that had been tried with the same results, she insisted that I had to be on it. Did I mention Serotonin Syndrome is potentially fatal?
Then we have the methotrexate she would discontinue. It is helping and because of it I am able to move my hands, wrists and knees (as long as there isn't a storm or its not too cold). It is supposed to slow the progression of the degeneration of my spine. She looked at an x-ray done at the Cleveland Clinic and stated "there's nothing there, just some mild degeneration and arthritis". Excuse me did you just use the word DEGENERATION and MILD? Yeah, that's how the one in my neck started. The idea is for it to NOT DEGENRATE!!! Flexeril is absolutely necessary or my spine would not move AT ALL. Asthma? I've had it since I was born and it has improved since I have been on the methotrexate. I haven't had a single sinus infection, or asthmatic episode.This might indicate there was an underlying autoimmune response that triggered it and the methotrexate isdecreasing that. Also, a doctor at THE CLEVELAND CLINIC, had a RULE IN of seronegative Lupus! Get your act together people! Get on the same page.
I will say, I wasn't opposed to not using Robaxin and morphine. However, I just had major surgery 3 months ago so it is not unreasonable for me to still have some pain, and that's what these two medicines are for. Therefore, they will naturally be eliminated as I recover from the surgery. But, we still have to solve the mystery of the continuous auras that began when I started physical therapy, and the why when I have physical therapy I get migraines that rank a 10 out of 10 on the pain scale.
So all in all, my visit to the Clinic was a disappointment; a dis-appointment. I left feeling hopeless and I have been crying since last night, at every interval that I can be out of the boys' sight. Today I'm having a real tear fest and I'm so glad that I'm home alone so I can really let it out. Its very cathartic, and I have insight when I emerge. However, I can't help but feeling hurt at the doctor's attitude and lack of empathy for real and genuine pain that I, and no doubt others, feel when they come to seek help. I realize its a headache clinic but when there are multiple conditions that need to be treated simultaneously then a TRULY multidisciplinary treatment plan with these other factors in mind needs to be created. Having tunnel vision is not in the patient's best interest, and frankly, seems reckless.
So, as the song goes, and with my friend's statement in mind: I still haven't found what I'm looking for. I'm tired. Tired of doctors. Tired of explaining myself. Tired of hurting. Tired of crying. So for now, I just want to rest, be still and breathe.
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