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
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