Friday, August 05, 2011

How to have the best months of your life

I started this week with vertigo so bad I couldn’t get out of bed. It was an infection of a part of the ear which is inaccessible and was told it is “medically one of the most debilitating”. Since I wasn’t sure, between the pain and my world being literally on ‘tumble dry’ that I would make it for very long (since the nausea is pretty intense), as I had been eating only about 5-7 meals a week for the last few weeks. The current manager Fran, telling the Assistant Manager NOT to let care workers in isn't helping this (currently I am the ONLY 1 out of 6,000 clients whose building owner/manager will not allow a lock box for the workers to get a key, but won't let them in either).

Back to medical week! You would think a specialist appointment where he tells me that ‘others (xxxxx) died a couple years ago with this disease’ would depress me. Except it is about the level of exercise and the level of autonomic failure, particularly of my diaphragm and heart. The muscle failure, and function failure of my diaphragm is causing breathing problems and loss of oxygen. After taking a long history, labeled ‘difficult and complicated’ (the disease, not I), we talked about the amount of exercise I do, why I do it, and the results it brings (sweating, reduction of edema, pushing blood and oxygen to the extremities and into the capillaries). He stated that ‘others would have died a couple years ago’, that is, without the proactive targeted exercise I do.

The hour at the specialist started with him telling me I couldn’t have this disease as women’s in their 20’s don’t have this complicated a disease. It was the only time being told ‘Your disease isn’t possible’ got a smile, as I explained that I was actually not in my 20’s anymore.

No specialist had ever talked about who died and why, and who lived and why, before. Is there going to be a miracle cure? No. After a specialist and regular medical appointment this week I may have Kidney problems, and am having catheter specialist coming to the home on Monday (oh, that is going to be fun, right!!). And if the specialist is right he wants to take a Biopsy of my Kidney….while I’m awake. That isn’t going to happen, but I still have a stack of vials of blood he wants. And the Diaphragm problems means lung weakness and breathing with the top of my lungs. This is ‘bad’. Plus, in just over five months I am now stabilized at just under 50% of the maximum of Fentynal, and I take them every 48 hours instead of every 72. I still hurt in joints, muscles, nerves but can function, think and sometimes speak (I wasn’t doing so good yesterday after a quadruple intensive exercise session at the Y: only those who work with me several days a week could understand anything I said at all).

The Specialist identified I was taking my syn-thyroid at the wrong time and that it is likely too low. This means I can have less fatigue. And he was the first specialist to acknowledge that something I do because it seems to work (intensive boxing and exercise to make myself sweat) is keeping me alive longer.

Of course, after being told that I am alive because I exercise, I went the next day and exercised like crazy. This it turns out caused massive heart erratic and diaphragm/lung failure which worsened every three hours until I was significantly elevated just to breathe: imagine is as keeping your head above water – if the bed is lowered, even in sleep, I drown. The bright side was waking up to a face that was Edema free(notice the original artists' sketch of me as Oracle from Comic-Con at top left behind me).

In order to lower the edema, I have to retone the muscles, cells and walls which have been stretched. That is a lot of exercise over a long period of time. But the specialist explained that some of what I do, while painful and hard, isn’t actually suicidal and stupid.

Specialist: “If you aren’t dizzy then it doesn’t matter.” (regarding increased heart rate on being vertical)
Me: “Except that I have a heart rate of 176 to brush my teeth, I’ve checked.”
Specialist: “If you aren’t dizzy, then it doesn’t matter.”
Me: “Even over my maximum heart rate? That’s when I tend to pass out.”
Specialist: “Yes, loss of functional oxygen in blood to the brain. But until then, it isn’t dangerous.”

He also explained that what seemed like seizures after I pass out was in fact a combination of lack of oxygen, heat, high heart rate and high blood pressure causing a reaction which looked like a seizure but wasn’t (errr...I hope Linda remembers this). Which means that I can continue working past those incidents.

I am still limited by being MORTAL and though I exercised for an hour at close to my maximum heart rate or higher Wednesday night, I won’t be able to walk, hike, run or the like since just holding on to my walker and using the quad muscles I have still, due to the extremely high heart rate from being upright, is like sprinting up stadium stairs while carrying 100lbs. You might be able to do it for a while, or even get used to doing it for a couple minutes, but that’s all. And you are going to be REALLY tired and sore afterward, no matter how hard a person trains.

So at the beginning of the week, I was looking at how I don’t have that long before I die. While now I am looking at lung, heart, kidney, (perhaps liver) and other problems, but I have the chance to PLAN and try to live longer. Having that makes a big difference. Even knowing that I will run out of pain meds in the future means I need to fight for the highest quality of life now. I know my quality of life is low now and will be as low or lower again BUT I can fight to get it as high as possible and live longer hopefully. I just have to continue to do what is hard and painful and difficult.

Just having the chance to FIGHT for a better life is the gift I have been granted. Let's see what kind of journey I can make of it. It IS going to be an adventure. First, having a little less vertigo and more rest probably would help.

I hope you have a good weekend. I am planning to get out of here for the first time in a long time and go see if the blackberries are ripe. I want to see the world. Thank you again for your comments, letters, postcards of support. I am going to make these next months the best months of my life, if I can. Because I know how easily they can simply go away. Having a diseases like this makes a mockery out of anything ‘expected’ – I do when the disease allows it, and I am working so it will allow me out a lot more (I have most of a pizza gift certificate left for example!).

To try and distract from the pain, I have been watching The Good Wife, on DVD (Season 1 cheap from the UK!). It is produced by Ridley and Tony Scott of Gladiator, Black Hawk Down, American Gangster fame. Together with Michelle and Robert King (writers of all 46 episodes) it has gotten the Golden Globe, six more awards and 39 more nominations. I avoided it because I thought, ‘Oh great, another ‘loyal’ wife as sleezy husband claims he is changed after sex scandal’ But that is covered and done with in 10 minutes. Then it is about a top lawyer who stopped after only a few years practice, now a junior lawyer at a firm, fighting it out (two hires for six months, only one is kept) to keep her job and prove herself more than just a ‘face’ off the tabloids.

While she dresses like Jackie O. is making a fashion line, she’s learned how to not back down, how to let silence do the talking for her and to know when to push her advantage. Each episode is her participation in another case, sometimes as first chair on a small case, sometimes just as a lowly researcher, as she gets dumped the pro bono work, then pulled off for ‘all hands on deck’ disaster regarding a big client.

It has gotten me through one day and a night of extreme pain, which is a high recommendation.


wendryn said...

I'm glad you are still breathing, though it sounds rather challenging at times. Somehow I get the impression you are happiest when you are fighting...

They aren't letting care workers in? Isn't that illegal or something? That's ridiculous!

At least the specialist doesn't sound like an idiot.

I'm glad you have something interesting to watch! I haven't started that show yet.

Lorna, Bob and Liam said...

I remember that one of your goals in the past few months was to cycle a marathon. It sounds like getting the exercise that you need (that "walking up stairs with 100 pounds) might end up serving as that marathon... after all, it's the desire, motivation, will, effort that counts, yes? So running/walking/cycling down a roadway, or doing what you have to do to keep yourself alive - in the end, it seems like you still can compete and excel and come out a winner.

Your building manager's issues with allowing care workers access - this sounds like a pretty good case of systemic discrimination (when a rule that seems neutral on its face is actually discriminatory when applied to someone with a protected status, such as a physical disability). I wonder if you had a chat with her about the possibility of a human rights complaint, if she'd be a little more cooperative... hmmmm.

I'm glad this specialist is validating some of your issues (and your actions regarding those issues, such as exercise) and seems to be on the ball regarding certain things like your meds.

I hope you find your blackberries (isn't it a bit early? It is up here in Nanaimo) and whatever other natural beauties come your way this weekend - we have Tiger Swallowtail butterflies fluttering around our yard and leading our two new kittens a merry chase.

Much love,

Lorna, Bob and Liam

Linda McClung said...

It's not often that we come out of a specialist's appointment feeling positive. For me it usually a frustrating experience.

With this one, we knew he wasn't going to miraculously find a cure, but I was pleased that he could give some explanations to oddities and also possibly improve your quality of life.

As for the rushing out to exercise, I will try to help you find a balance as to how much. That way you won't be in constant pain from muscles rebuilding.

I hope the change in synthroid will make a difference too.

I'm looking forward to getting outdoors with you tomorrow.

Anonymous said...

I am so glad for this news, I sent you some gloves so I hope they are useful in the exercise. Linda is right about the balance :-) loads of love, Nicci xx

Elizabeth McClung said...

Wendryn: Leave all doubt behind, I AM HAPPIEST WHEN FIGHTING. This disease is like a leech, or a collection or parasites which drain me without the slightest chance to fight back - now I can.

Yes, it contravenes basic human rights to stop the works sent BY the BC GOVERNMENT to ensure I get basic care. However, as VIHA does not want to tell the owner of this building that until care is allowed to me, all VIHA buildings and computers will be flagged to withdraw the basic care to him and his family - the hospital and the care workers come from the same organization: VIHA. Blood work and if an ambulance will even pick you up all go through the SAME agency. So when VIHA gets serious, and Beacon, the largest non-profit organization in Victoria gets serious and tells the largest private owner of rental buildings and on the board of the local university that no, if his loved ones are in a car accident they will not be allowed in the door of the hospital, as that is HIS POLICY.

I may seem overly serious about this. Well, I recieved ZERO care for two days while Linda was away because of this. Almost weekly I have a day without care - this is why I eat only 5-7 meals, meals on a day when workers call Beacon, then VIHA and spend 25 minutes AFTER the assistant manager has said 'No' or Fran has looked at them, seen the tag of care worker and turned away. Does this man want HIS children in a room with no way to move, no food, no water, no care for two days? Does anyone? Yet that is what he has decided as the final offer to put in a lock-box in ANY part of the apartment was rejected. We have tried for four YEARS.

Elizabeth McClung said...

Lorna: I still have a goal to wheel the marathon, and I WILL wheel a 5K as one becomes available - oddly not a lot in the midst of summer here.

No, desire counts for nothing. Only the absolute brutality of doing it counts medically, and only doing as a completed goal counts for me. I do a 5K or so weekly in a long training wheel.

As for my health, I hate the exercise, as if I have had almost no sleep, if I am barely functional, and only with assistance can get to the Y - I still MUST exercise 40+ minutes without a single break, with a speed and intensity which puts push-ups at two to three a second and sit ups usually combined with boxing at several a second. Then I box three rounds of three minutes, usually a 'speed minute' and if that means the worker pushes me upright and I can't see, or I am screaming, I CANNOT STOP. As to stop would waste the two hours getting me ready, the 25 minutes to get the sweat starting, because I stopped. It would all mean nothing, I would spend 40 hours recovering for NOTHING, as it benefited my health not one iota.

And in the end, no matter how much exercise I do, I will still die, and soon.

So for me, I make goals so that I may achieve them, or so that if I die, I die while in the attempt of something literally unbelievable, a palliative end stage individual going from hospital to training and back to hospital. The first question I said regarding an in-dwelling catheter was, "I don't know how that will work with doing a 10K", particular where they tape it to stay.

The idea is nice, but it is not me.

I think this could go before the renters board, and only a couple months wait too (and the fee, of course).

It was reported there were blackberries in Port Angeles, and if they have them, we do as well.

Linda: I agree, I felt, except for the biopsy, almost cheerful.

I have almost given up the idea of going to the Y daily, so how about every OTHER day? That's compromise, right?

Aviatrix said...

I wonder if there is someone else living in the building who would agree to let your care workers in.

Do the care workers call the manager's suite and the manager says, "nope, don't know you, can't come in"? Your life is bizarre. I think you need a trained squirrel that will go and bite quite a lot of people on your behalf. Alright, that makes no sense, but neither does all the weird discrimination you get.

Tina Russell said...

Yay, Beth! (huggles) I’m glad you found a specialist who can listen to you and appreciate what you do and how you are. You die _hard._ I keep preparing to mourn and you keep beating expectations. I love how you accept that your body is dying and so you push every last ounce of it that you can. When you die, I’ll have a tear and a smile because I’ll think about how, no matter how hard it was, you never gave up on living. (Then I’ll start bawling and be really sullen for a while, of course.)

I should say, you _are_ blessed with youth, Beth. I’m glad the doctor noticed. You’re actually my only friend who isn’t in their teens or twenties... I guess I see you as ONE OF US! Except wiser, of course (but still prone to hyperactivity and effusive sexuality, bwahaha!!). Oh, and you totally are Oracle. I’d definitely call you for intel when out on a dangerous stealth mission.

God bless, Beth!

Noisyworld said...

Wow, a helpful doctor, not enough of them about!
The situation with care workers' access to the building is ridiculous :( There's got to be a sensible solution- if only I could work out what it was lol

I hope you find a happy medium when it comes to the exercise routine, it makes me feel tired just reading about it!

Anonymous said...

youre a winner,, hang in there Tiger=)

SharonMV said...

dear Beth,
Hope you found some blackberries! The new specialist actually seems to be treating you as an intelligent human being! A very good sign. he listens & shares what he does know with you. Having your thyroid level right really helps with energy. It's very upsetting for me when I have the will to do things and due to low thyroid or low adrenal,I just can't. Even with your powerful will to fight, athletic abilities and the motivation that your life depends on it, can use the help of having the right amount of thyroid hormones.

The fact that your land lady will not let in the care workers is unmitigated cruelty. I hope you can resolve this problem.

Love, Sharon

Olivia said...

It's sad that its so amazing to find a specialist who (a) seems to have useful knowledge/expertise and backs up your own expertise on your condition and (b) facilitates your own fighting. So fight on Beth!

I received a lovely parcel from you today with doggie treats, manga and other goodies. I quickly realised why the dogs were so interested in what I was opening! I'll send you a separate email but wanted to say thanks here too.

Raccoon said...

I think that's one of the only good things about not eating -- you don't have a lot to regurgitate. As for the building manager... is it possible to lodge a civil rights violation complaint against her?

Or, if you do manage to get consistent help, maybe give them a key?

Aww. The doctor knows how to butter up his patients. ;)

A catheter specialist? I've never heard of a catheter specialist. Taking a biopsy of your kidney; aren't biopsies of internal organs supposed to be done under anesthesia? That's a surgery, I thought.

And just because a doctor says exercise is good for you it doesn't mean to overdo it!

"... I have the chance to PLAN and try to live longer." I thought you had been planning and trying to live longer?

Yeah, I avoided "The Good Wife" for the same reason as you. Maybe I will try catching an episode online.

As for the weekend... I hired a new person who had her first day, and I was able to get two of the three cats living here microchipped. I'll get the last one next weekend. And I got some fruit at the downtown farmers market, which only has produce and a flower stand and a guy making balloon animals for kids; nothing like the ones you're able to go to...

JaneB said...

Yay for a supportive specialist and for something to fight for and the tools to fight... we're cheering you on.

Neil said...

You, and Kidney Biopsy: two things I can't see working well together. Having had it done to me, I can report that they do use a local anesthetic, but then I had to lie on my back for 24 hours (I suspect that was longer than normal, because the idi- er, the doctor was rushing and took 12 tries to get three pieces for his sample).

The landlord and Fran not letting Beacon into the building is DEFINITELY a human rights case. Of course, you have to have the time, energy, and possibly the finances, to fight such a fight. I can't see the case lasting very long once they got you into the room, though...

Fran would allow the care worker in if you met the worker at the door yourself? If that were possible.

Once again, I wish I had enough money to help you two get some quality of life for a few months. Argh!

Love and zen hugs,

GirlWithTheCane said...

I think you're inspirational. said...

I'm another "girl with a cane" and I also think you're inspirational. I also frequently get the comment "you can't have that, you're too young" or similarly silly declarations (not even about diagnoses, but about SYMPTOMS). I've often thought (shame shame shame) that if my condition were more "serious" than a lifetime of pain and infertility, my doctors would take me more seriously. I'm sorry to see that's not true. Thanks for writing this and everything else (and for coming to see my nascent little blog). And thanks for articulating what it's like to do this with a partner. My girlfriend and I just got engaged, and she seems very similar to Linda when it comes to caretaking (she has to remember my symptoms and regimens for me, and often speaks more than I do in appointments, because I just end up crying or shouting). Anyway, thanks.