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.
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