In another attempt, once again, to jump start my writing….I am coming to WordPress with some random stuff from the past weeks, to bring things up to speed with where I’ve been and what I’ve been up to.
I want to take this time to apologize to those who have been waiting for the remaining installments of the “Erosion” series….I was unexpectedly gobsmacked by the emotional upheaval the series brought to my mind (buried, as it was, deep in the recesses of my memory)…and so I am still unsure if I will get back to it and finish or just let it hang. Memories can be intensely strong, even after 40 years. The messed up teenager inside me is still reeling from bringing it all back. So bear with me. Maybe some day…
In any event, some new things have been happening lately. I began seeing a nurse practitioner that works in the rheumatology clinic here at one of our large hospitals. She has been “interesting”….I have seen her exactly twice and so far, I am not quite sure, but I think I like her. Although I detect a bit of staunch rigidity in her approach to those in chronic pain and taking pain meds….”you certainly do take an awful lot of medicine for pain….”, while slight shaking of head. But then, no more commentary, so not sure exactly what she was thinking. Actually all I take for pain is Vicodin, gabapentin and ibuprofen, some Triavil and some supplements. Although the Vicodin is 3-4 times a day, the dose is not large when you consider the amount of pain I am in on a daily basis. I only wish it would all actually work better.
When I first saw her, I presented with most of the symptoms of Sjogrens disease, and asked her about it. She immediately examined me, sent me off to the lab with orders for tons of blood work and xrays of hands, feet and lumbar spine (I also have progressive osteoarthritis). The xrays showed “degenerative changes”, in other words, osteoarthritis. No surprise there. Although the blood work was negative for Sjogrens, because I meet the criteria for symptoms, they have decided to treat me with Plaquenil.
When they first put me on the Plaquenil, because of the amount of joint pain I have been in, they decided to jack up the Plaquenil with a “short burst” of Prednisone. I began with 25mg for 3 days, then 20mg for 3 days, and on and on until I came down to 5mg for 3 days, then off. The nurse told me I would “feel like cleaning my house”. She failed to tell me that I would also feel like punching a wall.
The Prednisone set me on a crazy freaking bitch from hell ride that lasted several weeks and god help anyone who got in my way. I have only been off the Prednisone for one day and I am still feeling like someone slipped me a Nut Job Pill from hell….. the mental & emotional “turmoil” (a nice word for it) made me feel like I was truly flipping my lid. I felt like a mad woman. I shared this with some of my friends who have also been on it and one gal told me not to feel bad….her husband was on it once and he got so pissed off at something that he slammed his laptop to the floor and broke it. She also shared with me that once she herself was on it and she recalls throwing a chair at her husband as he ran down the hall! LOL! So….evidently the way it affected me was not unusual. Another gal told me it made her “one mean bitch”.
Now that I am off of it, I am hoping to come back to my senses so that I don’t end up either in jail or in the hospital. This is intense medication, that I hope to never find myself on again. Although, truth be told, I actually DID clean one bedroom from top to bottom, I felt so damn good. I could not believe how normal I felt physically….my pain was nearly completely gone for about a week. I was just reveling in it and tried to enjoy it, knowing that soon I would come crashing back to reality once the stuff was out of my system. Unfortunately, that reality is now and the pain is rolling back over me like waves off of the coast of Maui.
Anyway…..the Plaquenil is supposed to help with joint pain. So I am waiting. They say it can take anywhere from one to three months for it to begin working. I am not sure yet if I feel like it’s helping the pain…it might be. I’ve been on it since Christmas, so it’s been almost one month. My osteoarthritis is bothering me, with the thumb I injured and my lumbar spine being the most painful. My fibro in my hips and muscles all over still hurt as well. So maybe we’ll give the Plaquenil a little more time. It is supposed to help halt the progression of Sjogrens so I suppose I will stay on it at least a good six months, to give it a chance. Anything is worth a shot.
Some of you may recall the news about my old GP that jumped ship on us several months ago without a word. I saw this doctor for 10 years and he evidently got in a fight or something with someone at the office and left the office without a word to his patients or even the staff at the office! Needless to say, I was left high and dry, without a regular doctor now for all these months. The one NP and a couple docs have been trying to juggle his patients with their own for all this time, also trying to get a new doc in there to pick up the slack….anyway, they have been refilling my meds all this time but now they want me to “come in and be seen”…..since I have not been in for an appointment since Dr. C left. I made an appointment with the NP for Friday. I am a little concerned because I told them when I made the appointment that I might need a refill of my Vicodin before the appointment…..and could the NP please order me a refill if I promise to come to the appointment (like a good girl, of course I didn’t say that but I felt like it)….the receptionist said she would ask her and that she probably would. Well…..the NP did order some Vicodin but only 10 pills. Hmmmmm. That’s interesting. Since she knows I take 3-4 pills a day…..for her to only order 10 pills makes me wonder if I am going to have an “issue” with this NP. I am getting my strategy together, figuring out exactly how I am going to have to handle this situation.
I would certainly hope that this NP, who has never laid eyes on me before, will not be so obtuse as to mess with my pain meds on the very first time she sees me…..knowing nothing about me or my history. I am prepared to discuss with her the fact that I need these meds to give me only just a modicum of a quality of life, the ability to work at my job as an antique dealer….and surely she will not try to cut me down or even remove these meds without even understanding that I have been a chronic pain patient for 31 years. I have been on these pain meds for at least 15 years and only had the dosage upped one time in 15 years. I would hope that would speak volumes about how I am a good girl and don’t take more than I need and never rock the boat….. And with all that said, I know that with one stroke of the pen in my chart, she could alter my life as I know it. If she so chose to, she could make my life even more of a living hell than it already is….by trying to mess with my pain meds.
I do have other options if she gives me a hard time. Although I so hope she doesn’t, because I don’t have the energy to try to fight yet another medical professional for the meds I need to function. I sincerely hope she doesn’t mess with me…..please god.
The other options are: a doc my husband and I met at an Urgent Care facility back in the fall. He was aware of Dr. C’s sudden departure and offered to take Dr. C’s place as our doctor. He seemed very nice and he might be a possibility for a new doctor altogether. Also, the NP at the rheumatology clinic said that they would be happy to dispense pain meds IF I signed a “pain contract”….which means that I would promise (pinkie swear) that I would only get my meds from them and no one else, and that I would take them as prescribed. (as if I’m a third grader in time out) Of course, I told them I would have no problem with a pain contract but as of right now, I’m all good with the office where Dr. C was.
If it becomes a problem getting my meds at Dr. C’s office, I will pick Door Number One or Door Number Two. Surely one of those will provide what I need. I just hate being put in this position yet again. I can’t count how many times in the past 31 years I have had to fight and cajole and use all my wits to gain access to the medicines that make me able to run a small business and clean my house and do my laundry……as if I was asking for PLUTONIUM or something. Geez. It’s not like I’m trying to get high, people….I just want my pain to ease up a little. Is that asking so much?
On another note, my hubby’s job is on a teeter-totter right now. The union voted against what the company said they “needed” from them to keep the company afloat. We have been giving back and giving back, and then the company mis-manages everything and we end up paying for their ineptitude. The guys are sick of it. But now, Saturday, comes another vote and this one could be critical to whether the company can keep going or not. Personally I think it’s all bullshit but who knows. This could mean the end of hubby’s career as a truck driver if the company falls apart. We would have to retire from it earlier than planned and our lives would change drastically. Talk about pinching pennies. Wow. I am worried. But we will figure something out. We have some 401k money (not much, but some) and we could use it to pay off some of our debt and save the house. But he would have to find something to do and I would have to really amp up my antique sales in order to stay afloat ourselves. A hell of a thing, when you are starting to age and something like this could throw us into chaos. I guess it happens.
So anyway….that’s the story from here in frigid central IL…..the high temp is supposed to be ZERO tomorrow. Zero degrees for a high….I am so sick of this crazy ass cold weather I could scream. I get so stiff. Oh well. That’s life.
Til next time…….. xoxo