Huzzah!

I am infection-free! First time in 3 months. No UTI, no kidney infection, no lung infection … nadah!

On a happy note I am to have an appointment on December 14th for a follow-up with Herschorn. The secretary, Holly, squeezed me for 8am. 8am you gasp… that is an ungodly hour. And it may be so, but considering it can be upwards to a 3hr wait to see Dr Herschorn being one of the select individuals to have an appointment before 9am means we are seen in a timely manner.

Holly squeeze me, as a favour. Seems I don’t hound her when I do show up for appointments, bugging her with the refrain of “how much longer is it going to be?” I have been going to Dr Herschorn since 1990 and I am well aware of his tendancy to squeeze in as many patients as possible, and occassionally taking time out to do an ultrasound or x-ray, thereby extending a patient’s appointment from 5 minutes to an hour sometimes. Or he gets called in for consults.

Holly stated rather loudly “you don’t hound me, you are low maintenance” while I was booking my December appointment. There were other patients surrounding her desk, getting rather antsy and pissy with her because of their appointments. I just quietly asked for an 8am if it were possible.

Sometimes it behooves us all to pay attention to how we treat others. On occassions such as this being polite and patient pays dividends. Being a mean pissant, though in the right, can be to one’s detriment. And we should all bear in mind that it is the secretaries who act as the border guards to our doctors, be nice to them and they will treat you well. I also hold to same theory with regards to nurses – except for the truly incompetent ones, then it’s a case of having a discussion with the Department Head.

Sunnybrook ER

I haven’t been feeling well for a while now. I went to a walk-in clinic on Septemer 21, cos I had an increase in mucuous production plus an increase in sediment — a definate sign of a UTI. At the clinic the doctor asked me how I knew that I had a UTI – I said my stoma hurts. He gave me a double-take, said “excuse me” and I said “yes, my stoma hurts”. Normally one does not need to drop their trousers to expose their abdomen when complaining about a UTI, but he wanted to see the stoma. Anywho, I pee’d in a cup and the GP gave me a script for some Septra.

This week I got a phone call late on Monday telling me that the results were in from my urinalysis, and that I was to come in to the clinic. I went on Tuesday, and the GP said that the Septra I was on wouldn’t work as the E.Coli was resistant to Septra — told him I already knew that as I had some abdominal pain now, and the mucuous was getting quite dark. I also told him that I found it unacceptable for a lab to take nearly 8 days to get results to a patient, as a UTI if gone untreated can spread to the kidneys.

GP begged me to go to the  ER, so I paged Urology at Sunnybrook and they told me to try Macrobid (one of the few drugs the e.coli was sensitive to). I went to the ER yesterday cos there was more blood in my urine, and boy did I have an experience…enough of one that I am drafting a letter to Sunnybrook’s Patient’s Advocate Office.

I got to ER and was triaged adequately. My vitals were taken, details were written down, and I was registered … all quite quickly. I sat in the waiting area for about 90 minutes, which isn’t too bad. As I am still on the MRSA-Danger List they had to get a cubicle ready that could handle such a dangerous creature as myself.

Got into Green-ER (Sunnybrook has different areas of ER, each colour indicating the severity of the emergency) and onto a stretcher at 19:30. At about 20:30 I asked one of the nurses at the nursing station if someone was going to come and check in on me, as I had been on the stretcher for an hour. I was told that they were quite busy, and that they were handling patients in terms of their severity.. I kept my mouth shut, but only about a third of the beds in Green-ER were filled, so there was no chaos going on. Just before 21:00 a nurse walzes over, takes some blood and starts an IV. I had asked the nurse earlier for a kidney dish as I had to cath, and that seemed to cause some problems as the poor woman actually had to get off her arse to get me a container to cath into (I had to give a urine sample, ergo my concern about pee’ing into the requisite cup).

At about 21:30 a Dr Horowitz, a 1st year Urology Resident (who I had spoken to earlier) came into ER and he & a medical student were taking care of me. A dip-stick test of my urine confirmed the UTI, but it will take a couple of days to get the culture results back. In the meanwhile we were waiting for the blood cultures. I had a slightly elevated WBC, but still within the acceptable range. At about 23:00 Dr Horowitz said I could go home, that he would be signing the discharge papers immediately.

At 23:40 I was still on the stretcher, waiting for the IV to be removed. I asked my “nurse” if I could go home. She said she’d check on the work orders to see if there were any discharge orders. 10 minutes later she’s chatting with a co-worker over some training issues, not looking for the discharge order. I went over to the desk and she said rather firmly that I was not to leave the cubicle, to which I indicated that I had been waiting for 45 minutes to get the IV out.

The nurse huffed and treated me as if I was some mean-spirited, demanding and belligerant patient. I can’t remember the name of the nurse, and to be honest I really don’t care. But if anyone does recognise this description I would suggest you avoid her as she’s got a major attitude problem – she’s about 5′7″, chin length very straight blonde hair, slender (almost skinny), wears glasses & fine bone structure.

What has shocked me with regards to this visit to the ER are several factors:

-I indicated that I had MRSA, so when I got into Green-ER there should have been a hazard sign put up… it didn’t go up for nearly 2 hours while I was on the stretcher

-when I spoke to the charge nurse (I assumed she was such, not once did she get up between 19:30 to 23:30 to see any patients, she just sat at the station plucking away at the keyboard) she seemed to act as if I was a huge burden asking for a kidney dish and having the unmitigated gall to suggest that there was a lack of care cos I was not seen for over an hour

-the nurse who “took care of me” (and I use that phrase loosely) had a serious attitude problem, not once taking note that if a patient has been discharged that they should be released in a timely manner.. no one was being resuscitated, there was no heart attacks, no vomitting, no one being placed on a ventilator…nothing like that in Green-ER, so the place was very quiet.. why ignore the patients?

As I said, I will be writing a letter to the Patient’s Advocate Office to share my concerns over this lack of patient care. The triage nurse was great, kudos to her, but the rest… they are a disgrace.

Toilet Self-Absorption

I’ve blogged about this in the past and I guess I am still astounded at the self-involvement and lack of consideration of others when it comes to toilet etiquette. Today I went to the ladies, with my “pee kit”, to cath.

The disabled cubicle was occupied, so I waited hoping that it was actually a lady who really needed the cubicle and not just another self-absorbed yoga nut who needed the space to change into the latest in Lululemon-wear. I know, I was being far too idealistic, but one can hope and dream. It actually was a slender yoga outfit wearing woman who came out of the cubicle.  At first not a single ounce of remorse on her face, until she saw what I was gripping tightly in my hands – yes, my “pee kit”.

I don’t use the disabled cubicles cos I feel like it, or because I like room to spread whilst having private personal moments on the commode. I use the blasted cubicles cos I need the space to prepare for the catheterisation – which takes upwards to 10 minutes at a time, as it involves getting the tube of MUKO out, gauze, tape, the catheter, a syringe, and a couple alcohol swabs.

Why must people be such self-absorbed pigs when it comes to the disabled cubicle. It exists for a reason, and that reason isn’t so that one can get into the fitness gear.

Oh My Stoma, How you Delight Me

I haven’t blogged in a while, and not because I didn’t have anything to “report” on but mostly due to sheer laziness.

I continue to have problems with my stoma, with my attempts at intermittent catheterisations tending to fail within a day or two of the foley being removed. Back in mid-August Dr Herschorn removed the foley and I was able to go 10 days, cath’ing and then one day I couldn’t. We tried last week and I managed to last 8 hours before dragging myself back up to Sunnybrook.

This time round Dr Herschorn removed it just this past Tuesday and so far I’ve manage to go 48 hours without too much difficulty. I have figured out a way to cath which causes the least amount of discomfort (i.e. no bleeding of “rosebud”) and is sitting on the toilet is a reclining position, lifting up the abdomen to make the stoma opening larger and using gobs & gobs of medical lubricant. So far this has been working but my back hurts because of the funny toilet implements on commericial toilets — not like a flush handle ramming itself into the small of your back to make one feel truly alive.

The last weekend of September Starkman’s Medical Supplies is having an Ostomy Open House where I can get supplies at 10% off and as I have a credit with them of about $35 just imagine how much gauze, lubricant, surgical tape and stoma-care wipes I can get…actually not that much, it’s all fairly pricey. But I’m looking forward to this Open House, mainly so that I can mingle with others of my same “plight”.

On a very happy note that which I call the “Death Diet” is still holding, haven’t gained a pound since coming out of Hospital on August 5th. Still hate pasta, ice cream, pierogies, bread, potatoes, and rice.

Festivals, PPDs, and Community Involvement

Yesterday evening I attended the Building Bridges Pub  Moot, which is an extension of the Toronto Pagan Conference — the goal being more community inter-connectedness, and networking.

A few comments were made yesterday which make me uncomfortable:

  • We must support festivals by attending them, as a sign of support for the organisers. My question is, what if the schedule of workshops, and/or presenters are not to the liking of the majority of the “community”, should we still attend? Isn’t it much more direct to not attend and low turnouts would be a direct indicator of what people do not want?
  • One cannot be considered as contributing to the community unless they attend the various festivals. I’m sorry, I don’t camp ergo I don’t go to the outdoor festivals, does that make me the equivalent of a dried up old newt useless to anyone? I don’t go to these festivals, for the most part, because of medical reasons…I will not use a port-a-potty, outhouse or a dug out hole; I will not use a portable shower; I need the bare minimum of some semblance of hygenic facilities.
  • One is not contributing towards the community unless they are willing to step-up to the plate and organise something for the good of the community. There will always be leaders and there will be followers, the followers outnumbering the leaders by a huge margin. Should the community become full of only leaders? I don’t organise anything cos for the most part people are not interested in Baltic Reconstructionism, they are still working with the confines of neo-paganism which still casts circles, uses athames and chalices, handmaidens, a priest & priestess, calls the four quarters and so forth. Why should I put out the energy? I once had a Druidic Seedgroup in Toronto, but try as I might people weren’t coming even though I held open circles…now, wiccan open circles oh yeah  you can get a good turnout but anything else you’d be lucky to get one or two peeps.

All of these comments I heard yesterday by speakers at the Pub Moot has made me view them in a different light. These comments, I found, border on being ignorant, intolerant and pompous. There seems to be this expectation that we need to support each other in all the different endeavours we have. But why should I if I find their businesses questionable? Why should it be automatically expected of me? My inability to camp isn’t just confined to me, but to many others…. are we unacceptable because we don’t make an “effort”?

Visit to the ER

I was not feeling that great this past Saturday and had some abdominal pain. As my latest stay in the hospital started with abdominal pain I was freaked. I paged Urology and ended up speaking to Dr O’Malley, a first year Resident, who suggested I try some Tylenol. He called 2 hours later to see if it worked and I said no, the pain was still there. It was suggested that I come into ER.

I was also having some problems taking deep breaths. Respirology, Infectious Diseases and Urology all told me when I was being discharged that if there was any slightest change in my condition I was to get myself to ER immediately; and I did so.

It was a 3 hour wait in the waiting room at the ER but eventually I was taken in. While waiting I was taken into an assessment room where 4 vials of blood were taken and an EKG of my heart was done. The heart was fine, my blood pressure was slightly elevated though, pulse was normal for me. When I was taken into a cubicle I was assessed by one of the ER doctors. A urine sample was taken, my bladder was flushed, and a swab of my nose and perineum were taken (cos I had MRSA 1.5yrs ago, and I need to have 3 negative swabs to take me off the MRSA list). It was a case of just waiting to see what the blood work and urinanalysis showed.

The blood work showed that my white blood count is normal, it was 5.3 which is in the lower half of the acceptable range of 4-11; when I was admitted last month my WBC was 15. The urine showed an infection, though for some odd reason the urine coming out of me was clear and pale – so I guess we caught the infection early. An IV was started so that a mega dose of some IV drug could be run into me, and I was given a script for Septra for 14 days.

On Sunday Dr O’Malley rang me from the Urology Ward to check on me, to see if I’m doing okay. I was – the abdominal pain had lessened somewhat.

Today, Monday, I went in for a Cystoscopy and Dr Herschorn found 2 bladder stones. One of the downsides of my surgery a year and a half ago was a greater chance of developing bladder stones – as the mucous (my bladder never grew from my birth, so it was augmented with intestinal material, ergo the mucous which is naturally produced by intestines) if not pee’d or flushed out can accumulate and turn into little stones. I have two, though they are very small. According to Dr Herschorn I would have a local anaesthetic and with the scope they would remove the stones…if it were not possible to remove them a little laser would be used to break them up.

Adventures in Healthcare

Well, I got sick again. Blast this decrepit body!

I went to Emergency on July 17th at 2am with severe abdominal pain. I was in ER for a few hours and was prescribed Macrobid by the ER doctor – a certain Dr J Thurger. I was sent home, hopped up on morphine. A few hours later the pain was worse, I had chills and was shivering so much I could barely stand. I called for an ambulance and got myself back to the ER. My heart rate was 175 bpm and had trouble getting oxygen in, so I was connected to an oxygen tank. Finally got to the ER and a team of nurses were working on me to get an IV started and to take multiple blood draws.

I was put into another room, thankfully I  didn’t have to move, they just moved the stretcher I was on. One of the Residents from Urology came down for a consult and he irrigated my bladder. What came out was huge bloody chunks of mucous and deep red urine. Macrobid is a fairly weak drug, so it would have never been able to kill off what was now a raging Urinary Tract Infection. The Resident manage to irrigate about a litre of sterile saline through me, and the stench was overwhelming.

I got admitted to the ward on July 19th, so yeah I was in ER for nearly 2 days before they could get me a bed. I got onto the ward (Urology Ward, C2 at Sunnybrook Hospital). It seems that superficially I was doing okay, but on July 21st I collapsed vomitting blood and stopped breathing. I was rushed to the Critical Care Unit (ICU) where I was intibated and then placed on a ventilator for nearly 10 days. Seems the UTI spread and I had an infection in the blood, and then it spread further to my lungs. I had pneumonia, and a fairly deadly one as I couldn’t breathe.

Eventually I was moved to D4, which is step-down ICU where it’s 2 patients per nurse while CrCU is one patient to one nurse. I was in D4 for a day and a half, and while there I had a number of tests done. I had a doppler of the legs done, as Respirology was concerned that I might have blood clots that could cause problems for my lungs. The doppler was clear. I had a number of chest x-rays, and was taken down to Angioplasty to get a PIC line inserted – a PIC is a catheter surgically inserted into a vein, for those of us with crap veins which have been tapped out. With the PIC in the central line (IV) in my neck was removed, as was the collapsing IV in my left wrist.

I was deemed fit enough on July 27th to go back to the regular ward. I was placed in isolation, as I was exposed to MRSA 18 months prior. I was on two different  but powerful drugs – Vancomycin and Levequin. I was in isolation because my MRSA is a danger to the elderly and the very young – and the ward was full of older men recovering from prostate surgery. I had a hard time the first few days, with me discovering that morphine now makes me wheeze and makes it difficult for me to get any breath in.. there goes another painkiller I can’t use. I was on puffers for a short while, but even those proved to be detrimental, with them causing me to vomit and cough rather violently.

While in hospital the nurses irrigated my bladder every 3-4 hours, to make sure there were no mucous plugs which could contribute towards another UTI. I was weak as a kitten and could barely stand but I practiced everyday and got stronger.

I was eventually discharged on August 5th and sent home. The first few days I was scared to sleep on my own. The whole experience of not being able to breathe on my own freaked me out, and still does. So for the first few days after my discharge Squirrel, Tarotcub and my mum took turns spending the night at my place, checking on me periodically to make sure I was okay.  I’m feeling better now, but am still freaked and am pleased that I am under orders to flush the bladder every 4 hours, which means I wake up in the middle of the night — my alarm clock is my friend as it beeping at me every 4 hours is very reassuring with regards to my fears of not being able to wake up.

I was scheduled for a cystoscopy for August 12th. I got to the Cysto Clinic and my doctor decided that I was still too weak for the procedure, so I’m to go back this coming Monday. While there I asked my doctor about this latest adventure. I was feeling sick towards the end of my hols in June and paged the Urology Resident on Call on June 27th from the airport (Pearson) as my stoma was infected. My doctor said yes, it probably started back then. He was shocked when I told him that I was at the ER earlier on July 17th and that they discharged me with a script for macrobid.. he looked livid, and he does have a reputation for being super protective of his patients, so I wouldn’t be surprised if he reems them out for nearly killing me.

I am still waiting for a call from Respirology as they need to run tests on me cos of the lung issues.

Currently I am at home, fluttering about my flat in a hospital gown. I’m still rather weak, but I am getting stronger. This latest bout has adjusted my tastebuds somewhat and now I find pasta and pierogies disgusting – like eating very thick wallpaper paste. Ah well.

June 24th/25th

June 24th was a lazy day, just waking up a little late in the day and spending time on a patio or two with Kimo and Remigijus. At some point I was to come over to Irena’s, where my father was visiting with his cousin.

Kimo, Remigijus and I met up on Vokeciu Gatve and went questing for some tea. As June 24th was a National Holiday (because of the Rasa celebrations that lasted all the previous night) most shops were closed. The goal was to go to Skonis ir Kvapas - a tea shop, but it was closed.  So we ended up going to Cili Kaimas on Vokeciu Gatve, for some “light snacks” which consisted of chicken wings for me and cepeliniai for both Remigijus and Kimo.

We whiled away the afternoon and at some point I poked Remigijus to remind him that we had to get to Irena. Woosh! Off went the taxi, taking us over to Irena for our visit. Whilst visiting with Irena there were quite a few bottles of alcohol already open, ready for drinking and the television gently flickering away with an open air concert at Nida for Rasa – we ended up watching a children’s concert.

Went hom and realised that I had not handed over the half-empty bottle of red wine to Kimo that I promised, so I dutifully rang him and he meandered over. It was a good close to my hols in Lithuania – visiting with relatives and meeting up with Kimo for the first time.

25th it was up bright & early to get to the Airport for my flight back to the UK. The flights were uneventful, with a short sprint to make it through the transfers hall in Riga to making a connecting flight back to Gatwick — only had 30 minutes between decent into Riga and boarding for the flight to Gatwick. But I made it!

Got to Gatwick and the construction there was hell yet again. Took nearly 2 hours to get through Customs as only 4 wickets were open to handle non-EU citizens, and there was a large number of us. Got through and by that time my wee little cherry suitcase was sitting all forlorn next to an empty carosel.

Took the train to Brighton and just spent the rest of the day relaxing. Did go to Waitrose to stock up on some food and proceeded to Tweet away with the peeps I was to meet up with the following day for the “Beanie Piss-Up” with rah_rah, akacarlos, mrspboutique, special_noodles, nancetron and ruharper.

June 23rd – Rasa!

The morning of the 23rd I woke up not feeling well, I had actually not been feeling well for several days. My pee was pink (meaning blood) and I had abdominal pain. I was to go visit my father and then we were to go off to his cousin Milda’s sodas for a light lunch and some gentle relaxing conversation in the middle of her huge flower garden (nearly an acre of fruit trees, vegetables and flowers). But I called saying that I was going to a medical clinic to be taken care of. I did go to one and I got rather lacklustre care — the Soviet system of medicine did not disappoint me, let me tell you, the utter lack of care and knowledge of the advances in medical science are still quite prevalent.

My father got anxious and didn’t want to go to Milda’s, but I reassured him that I’m okay, I got a script and was resting up.

Later I met up with Kimo and whoosh! We were off to Verkiu Parkas for Rasa!

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Rasa is but one of several different names for the Summer Solstice – the others being “Jonines” (for St John’s Day), Kupolines (because of the kupoline on which everyone throws vainykai [flower wreaths] onto as part of the celebrations). Kimo and I arrived around 7:30pm and it was a bit of a hike up the hill as there were hundreds of cars already parked around Verkiu Parkas. Got to the site and there were already several hundred people singing, dancing, going into the woods gathering branches and flowers and braiding their flower crowns (if a lady) or oak leaf crown (if a man). Various different ethnographic groups were there, along with members of Romuva and Kulgrinda – preparing the fire altar.

The formal opening of Rasa started with the ceremonial lighting of the fire altar – there were hundreds of us, watching and singing whilst the fire was being lit and carefully tended and propitiated by the ritual leaders. I too sang and thankfully I knew most of the songs – my favourite being “Dega Ugnele”.

Once the fire was lit we were each given some grains/seeds and it was suggested we make offerings to the fire. There was also black bread shared amongst all of us, as part of the opening rites.

Afterwards there was singing, dancing around the various different bonfires, throwing the head wreaths onto the kupoline, and general merriment – all in honour of the Sun Goddess Saule’s descent into the sea and waiting for her rising again.

My cousin Remigijus also came to help my first proper Rasa. I wasn’t feeling too well, so I didn’t partake in much of the merriment, but I did manage to wander about in Kimo’s wake – being introduced to various individuals from Romuva — and all in awe that I have managed to maintain the Romuva mailing list for over a decade now. Drank some gira (kvass), munched on some nuts and bread. It was all great fun.

The greatest part of Rasa for me, and I agree with Inija Trinkuniene on this, is that Rasa isn’t just for the pagans — all Lithuanians, no matter what their own personal religious beliefs, flung off the cares of the world to take part in this most ancient of celebrations of the Sun. It was fantastic being part of it all, watching an entire city (Vilnius) spend 2 weeks celebrating the upcoming Solstice — the build up was amazing and I wouldn’t have missed it for the world.

June 22nd

I woke up at an early hour to get ready to meet up with my father at his cousin Algirdas’s place. I admit, I was expecting us to go somewhere like a sodas (small farmstead only a couple of acres) but instead it was a day for us to hang out. We went to a Maxima which is like the Lithuanian Tescos to just walk about and eat a small snack at the Cili Kaimas which is part of the Cili chain in Lithuania which specialises in different foods, Kaimas is for “farm” or “traditional” food – which invariably means vast quantities of potato dishes and beer.

Got back to Algirdas’s place and his wife, Emilija, had prepared what is considered a light lunch – some appetizers of cold cuts, pickles, cucumbers, tomatoes, herring and bread. The entree was baked chicken breast with cheese & mayonaise — which I couldn’t eat due to my lactose intolerance.

I was to meet up with the Trinkunai at their flat at 3pm so I took a taxi over. It was a very pleasant 2 hours I spent with them. Jonas seemed genuinely happy to see me make a visit to him & Inija. I was asked about the gossip/news of North America. I was also asked other interesting questions as to what caused me to turn towards Romuva, especially when there are other more prominent pagan traditions in North America – like wiccan, druidry, asatru, etc. Was also asked how my parents managed to get my to get fairly fluent in Lithuanian — that part was easy to answer, which is my parents never allowed english in the house when I was young, it was either salt on the tongue or no acknowledgement of whatever I was saying if I spoken english, so the only way to get things done or answered was to speak in Lithuanian. As to why I turned to Romuva, that is an interesting question and I have decided what did cause me to turn towards it is that it feels natural for me, as if I feel at home, like slipping on a comfortable pair of shoes. The other pagan traditions do not feel natural, for my temperment, spiritual needs and philosophical outlook.

I was loaded down with issues of the Romuva magazine, The Oaks which is a journal released each year to coincide with the annual WCER gathering – World Congress of Ethnic Religions.  Also got Jonas’s latest book, the latest Kulgrinda CD – the theme being the songs & chants prevalent in Grand Duke Gediminas’ court. I was gently chastised for having such a short visit to Lithuania and it was strongly suggested that I come next year to the annual Romuva summer camp – so I hear and obey, I shall endeavour to do so. Jonas has been thinking of putting together a practical tome together – section on Zemyna, for example, give a general explanation of who she is (Earth Goddess and daughter of Saule the Sun Goddess and Menulis the Moon God), how she is propitiated and then provide source material to show how this knowledge has been acquired — liaudes dainos, tautosakos etc. I admit, if Jonas can put this together I would be hugely excited to get it into my hot little hands.

We chatted about how Romuva is coping in Lithuania and the many interviews both Jonas and Inija give. Romuva, as a movement, started back in 1967 and both of them are working on transitioning the administration over to the next generation – an example being that for Rasa this year they wouldn’t be in Vilnius to lead the celebrations – others would do it. But they both have big plans and are still tirelessly working to promote Romuva.

Afterwards I toddled my way home, which is approximately 3km from the Trinkunas flat. Stopped along the way to pick up some refreshments for myself. Had a good full day and i was quite pleased with myself.

Later on I threw caution to the wind and had a chocolate croissant. I have to admit, with the food being generally lacking in fibre I was not feeling all that “cleansed” so I was hoping that an overload of lactose would clear me up. I also drank a litre of milk… eventually it worked, the following morning.

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