… Don’t come again another day.
On July 3rd I had my last IVIG treatment, and since then my pain has increasingly gotten worse.
By “worse” I mean: stronger shooting/throbbing (upper and lower) back pain, stabbing sensations in my feet and legs, constant pins and needles in parts of my legs and now on the bottom of my feet when I put pressure on them (this has made even standing/transferring so difficult that my eyes often fill with tears. This occurred last year too, but the IVIG stopped it), numbness in a portion of my face and some areas on my legs, thighs and hips. And to top it all off: the number of falls when I stand/transfer/walk a few feet has nearly tripled… Ugh.
Throw in the usual side effects: sleepless nights, high blood sugar, headaches, fatigue, dizziness, nausea, frustration, massive hair loss (I usually have to resort to wearing hair extensions when it isn’t pinned back), anxiety, extreme loneliness and sadness accompanied by the shedding of many tears (mostly from pain but sometimes out of frustration) – and that sums up a typical day in my life. Amazing, isn’t it…?
I’m still on the extremely long waiting list for the pain clinic. My family doctor had reached out to my neurologist to expedite the process and his response was that he had no influence in the matter. That’s a load of [beep]! I have been in enough hospitals and have dealt with enough specialists to know that they just need to make one call and then the patient gets on the priority list ASAP. I have no idea why my neurologist does not want to do that. Does he think my pain is not severe enough? Is there some other reason I am not aware of? Ridiculous.
Thankfully my shock and disbelief is shared with the home care nurse that visits me weekly. She is very persistent and just today wrote a note to my specialist urging immediate action. I simply don’t know how I’d be able to survive the current level of pain without stabbing someone – or myself – if I must continue to endure this arduous situation for another 2 years. (In case you’re wondering – it’s been a year so far!)
I see my neurologist soon so I hope this can all be sorted out. I’m afraid I won’t be very assertive about it because sometimes I suffer from what I call “Hospital Submission”. Hospital Submission is the state of being extremely passive, which is caused by prolonged hospital stays. The patient becomes accustomed to constant prodding from nurses/doctors and just submits to everything.
Regardless if I’ll exhibit “Hospital Submission” or not, I know my home care nurse has my back. If I don’t get the expedited referral; she will (she told me as much! Hah!). I’m very fortunate and feel absolutely blessed to have the support from her and my home care staff. They are amazing – all of them! Thank you for caring and going above and beyond!
Thanks for reading. Diane.
Nurse report to neurologist: “Pain remains an issue. [family doctor] made referral to pain clinic @ [hospital] but we would like you to put an urgent referral as well. As you are aware she has tried multiple things to relieve pain to little or no effect. Pain remains @ 7-9/10 to lumbar, legs and bottom of feet. Current [medications] hydromorphone 6 mg [4x a day]. [No] sleeping, multiple falls, [low] appetite, [high][illegible]. Thanks in advance.
UPDATE 09/03/14 I saw my neurologist today. He emphatically explained how he has no influence at the pain clinic at the moment and the current state of affairs there, and I believe him. We talked about different pain medications I could take on top of my current doses, and he wrote several new prescriptions. I also took a strength test and my right leg has gained strength! My left leg remained the same. Progress! :)
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