This list of 50 Ways to Help a Chronically Ill Friend comes from my old blog and was inspired by the article ’50 Ways to Encourage a Chronically Ill Friend’ on the US National Invisible Chronic Illness Awareness Week website.

Read the Spoon Theory and send them a link if you think they might not have read it. It can be an amazing encouragement to chronically ill people to know that someone else understand their life.

Don’t forget they are sick! Get well cards and gifts dry up pretty quickly when you have a chronic illness, but you don’t get better and unless a hospital stay is needed, it’s easy for everyone to forget that their friend is still ill. If you know that someone with a chronic illness is flaring or is depressed or just because, send them a card or a gift – it’s doesn’t have to be much! Just the thought will make their day.

It’s likely that they will be unwilling to ask for help, but will still need it. If you want to help out, try not to ask “What can I do?” which either invites the answer “oh nothing” or means thought is needed. Instead, think of something you would be prepared to do and ask “Is it okay if I do …. for you?”.

Be easy going guests if you go visit. Don’t expect entertainment, but also be prepared to do things if wanted. Knowing that a guest isn’t bothered whether we go out for the day (it can be nice to take advantage of having someone there to go places you wouldn’t go alone) or whether they read a book or do the housework is fantastic. It takes the stress away.

Preparing food for visitors can be stressful as many chronically ill people will not always eat properly on their own and you can’t suggest crackers for lunch to a guest! Take easily prepared food like fresh bread, dips and cheese/cold meats with you, or pop out to the shops for something. Asking if anything is needed for dinner or offering to pay for a takeaway are also wonderful.

If the chronically ill person has a baby, children or even a dog, ask if they would like a break sometimes. You may not even have to take the children/dog out – just having someone prepared to come round and look after them can mean a decent nap or a long bath can be taken.

If you live locally, easy meals in Tupperware containers dropped off at the house can be a lifesaver…especially if you don’t need the container straight away so it can be frozen. Just make sure you know what they can and cannot eat beforehand! Many chronic illnesses come with dietary restrictions, and these can change with time.

Be flexible and never make them feel guilty about things they cannot do. Chronic illnesses do not give schedules of flares or unexpected issues – we do not know in advance how we will be feeling.

Ask, “Do you have an errand I can run for you before coming over?” “No matter how little you have, you can always give some of it away.” ~Catherine Marshall. Just listen . . . until it hurts to not say anything. And then listen some more. Chronically ill people usually have a lot to get off their chests and often feel they can’t burden the people around them. Let them know they can talk to you and you’ll listen.
If the situation arises, ask “Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?” It makes one feel good to know that our experience can offer someone else hope and that we still have a purpose in life.

Treat them to a gift of movie rentals via postal mail through a service like Amazon rentals. It doesn’t have to cost much and even a few months rental can be a great gift.

Buy them things to cheer them up after you’ve gone. An inexpensive colourful top, a bright umbrella, a teddy bear or cartoon….
Ask them if they’d like to join you for a spontaneous event, whether it’s a local concert, a picnic or just a trip to town. Although it may seem like they cannot go anywhere without lots of planning, if you get them on a good day, then they’ll know then and there they can go!
Understand that they live in a constant state of making decisions for which there is no guarantee they are making the right choice.

Encourage them to make a (preferably online) wishlist and to add anything they find that could make their lives easier. Financial difficulties often go hand-in-hand with a chronic illness and just because we know of something that could help us, doesn’t mean we can afford it! Then encourage other friends and family to check the wish list for present ideas.

Educate yourself. Look up their illness online and if they are having new treatments, try to learn a little about them. It helps to not have to explain every little thing and may well make you understand alot better. Reputable sites like WebMD and Medicinenet are good places to start, but remember that 1, not everything you read will be true, unbiased and completely up-to-date and 2, by the time you have a firm diagnosis, many patients are experts in their own condition(s). Don’t use your knowledge to try and correct the patient – they may simply be more up-to-date with research than whatever you read. Educate yourself and only educate the patient if they ask.

Research support in their area and then send them no-pressure I-just-heard-about-this-and-thought-you-might-be-interested emails or notes about it. More support is always good, but a lot of the time, chronically ill people may not have the spoons needed to research it. National Associations or Patient Information Points at local hospitals may know of local support groups.

Don’t forget the carers. Many chronically ill people are looked after by spouses or parents, even children. Helping the carer means that they can look after the sick person better and the sick person will not feel so guilty that their loved one is their carer. Giving the carer respite breaks, calling them up and asking “how are you doing?” and letting them talk to you frankly or even finding them support (see if they have a local branch of the Princess Royal Trust for Carers , for example) as you might do for the chromically ill person will all help.

Be their advocate. If you are at an event and walking/seating is an issue because of their disability, ask if they’d like you to take care of it. If they say you can, be firm but not rude. Don’t embarrass them by making accusations of discrimination or by making a scene.

Don’t tell them about your brother’s niece’s cousin’s best friend who tried a cure for the same illness and. . . (you know the rest).

Don’t pester them to try something you read or heard about and think might help. If you really think it might help, send them a newspaper cutting and leave it to them to decide whether to follow it up or not. Simple acts of kindness like holding the door open (they can be very heavy!) are lovely.

Never call them names related to their disability, like “hop-a-long” – at least not until they do it first and then be careful.

Never say “maybe you’re not that sick after all”, “it can’t hurt that much”, “you just have a low pain threshold” or minimise or trivialise the symptoms in any way. We get this enough from incompetent doctors when seeking a diagnosis. And far from making much of little aches and pains, most Spoonies are inclined to minimise their symptoms to the outside world – if we are showing pain, then it’s almost certainly a LOT of pain, not us making a fuss over nothing.

Temporary illnesses and injuries can help you to understand what a chronically ill person goes through, but it is never the same. We have symptoms that never ever go away and no one without a chronic illness can ever truly understand that. Be careful with simple throw-away phrases like “I know just what you mean” – you probably don’t! If you truly think you get tired or hurt like we do, then there must be something wrong with you!

If your friend has a disabled parking placard and you are driving, allow them to tell you where they want to park. If they’re feeling particularly good that day, they may not want to park in the “blue space.” Don’t be disappointed that you’ll have to walk farther – it’s a sign of independence and a striving for normality and should be encouraged as long as it’s not done to the point of overdoing things.

If you’re going out with a chronically ill friend and they mention they would like to or would normally use a mobility scooter, wheelchair, escalator, lift/elevator, etc don’t complain that it’ll take longer or draw stares. It may be the only way they can go out with you and not make themselves badly ill.

Accept that their chronic illness may be lifelong and may not go away. If they’re learning to accept it, don’t tell them the illness is winning and they’re giving in to it. They are simply being realistic!

See if there is any way you can enable them to do a loved hobby that their illness restricts. They may be an enthusiastic gardener who can’t dig or move a wheelbarrow or they may be a seamstress who can’t cut a straight line anymore. If by simple acts you can enable them to continue doing something they love, do it! It’ll be better than any gift.

Never assume they cannot do something without asking. It may be that it is something they can do on a good day and would like to, or that for them it is worth having to spend days resting before and afterwards.

Don’t not invite them to things because you don’t think they’ll be able to come. Having a chronic illness is isolating enough without feeling like you’ve been forgotten about completely.

Buy them a gift of a favourite magazine subscription. Having a chronic illness can be truly tedious at times, especially as you may not be able to get out to get things like magazines or may not be able to afford them.

If they don’t have a cordless phone, it would make a great gift! Comfortable phone headsets or phones with speaker capability make keeping in touch with friends even easier.

Ask what time of day is good for calls or visits. They may have a nap schedule they need to keep to or they may know that at certain times of day they’ll feel worse and won’t be up to polite conversation.

Be aware that what may seem like minor things to you can be big issues for a chronically ill friend. If you drive somewhere, ask if they’d like to be dropped off while you park. If you go for a picnic or to the beach, be aware that they may not be able to sit on the ground so bring a few folding chairs or cushions so they aren’t the only one perching above their friends. Walking from one shop to another may mean they need a rest before carrying on shopping. Trying to think about these things beforehand and to be accomodating will help alot…they are likely to not want to make a fuss and you helping in small ways can make a huge difference.

Give them a gift of an attractive plant like a rose bush that could be viewed from a window and say part of the gift is a planting service!

Never tease someone about how long they spend in the bathroom…don’t even mention it. If they’re taking a long time or going frequently, it’s because they need to!

If they have to stop work or receive disability benefits never say “well, aren’t you lucky. I’d love to sit on the sofa all day and get money for it”. Most chronically ill people would dearly love to be able to work and be independent…and sitting on the sofa soon gets very frustrating if that’s really all you can do.

If your friend misses a special event in your life, don’t be grumpy about it. Call and ask if you can bring some photos over and tell them all about it. Let them know that they are still a special person to them and you want them to be part of your life even if they couldn’t be there on the day.

If you’re coming for a visit or even just to go out somewhere, call and check it’s still okay before you leave.

Always ask before touching or hugging and never give them a power handshake or a friendly biff on the shoulder. Many people with chronic illnesses are in a lot of pain, particularly if they have symptoms like that of Fibromyalgia, where every touch signal can be magnified into significant pain. This changes all the time, so don’t stop hugging them, just check first and be gentle.

Recognise that pain and extreme tiredness can make anyone irritable (have you never snapped at someone when you’re sick with flu?) and that various medications can affect behaviour. If your friend does or says something rude or hurtful, give them the benefit of the doubt. They may well be horrified afterwards.

Make sure they have an answering machine to screen calls when they feel ill…and don’t get offended or call back repeatedly if you get put through to the answering machine!

Check that your perfume/aftershave is okay with them. Many people with chronic illnesses end up with chemical sensitivities where some smells can make them physically ill. They may not want to offend you even if you are unconciously making them feel worse!

Never smoke around chronically ill people who don’t smoke. As well as chemical sensitivities, they may have breathing issues or the smoke might cause problems with a weak or suppressed immune system.

Never criticise someone for taking medications that may be addictive, even if they are ones with bad associations like methadone. Pain relief or illness treatment options can be very limited and it is far better for someone to have medication that makes their life bearable even if it is addictive, than to be in awful pain forever. Recognise that mental and physical addiction such as heroin addicts get is very different to someone needing a drug because without it they can’t get up.

Encourage them to research their illness and never tell them it’s making them worse. Self-advocacy in chronically ill patients has been proven to be beneficial to the patients and can be their best hope of getting a diagnosis, appropriate treatment and coming to terms with their illness.

If they need to cry, let them and just be there for them. Never say “don’t cry” or “this isn’t worth crying about”…it obviously is to them! And remember that while help is always welcome, do not make a chronically ill person into your personal project – at least not so they notice! Constant suggestions can be stressful in themselves! be subtle and be prepared to take a step back if needed.

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I find it difficult to understand how an RN can “forget” that Imitrex (Sumatriptan) is only found in INJECTION form, not IV form for one very important reason: it can stop the heart. I have survived 3-4 IV injected Imitrex situations out of pure luck but this one was not to be without problems. It could have very well lowered my seizure threshhold, which apparently isn’t very high to begin with due to my chronic problems as well as the vast amount of maintenance medications I am on, to the point where my other medications (oxycodone or whatever) were able to trigger the seizure when normally, they don’t.

This one was different, also, in the fact that I was alone in the room (kitchen) preparing my TPN bag after taking my nighttime medications, when it happened. I was standing instead of sitting in my chair, like I was the first time, which caused way more issues. From the pain and swelling, I figure during the seizure I hit my chin on the way down and ricocheted off the refrigerator a few times with my head and then finally landed on the floor. Of course the noise was loud enough to call my husband from clear across, on the other side of the house. Because we told him how well he did handling my last seizure, not 3 months ago, he considers himself an expert (I would never wish anyone an expert on handling seizures!) and did not feel it necessary to alert the paramedics with a call to 911, like he did last time. Too bad too; I wouldn’t mind saying hi to my neighborhood paramedics. They are great guys!

He simply held me up so as not to hit my head on the hard floor again, turned me on my side to allow fluid to come out of my mouth, and then waited for me to finish shaking. Afterwards we headed to my favorite ER and had a CT scan (I’m not allowed MRIs because of my neurostimulator and portacath).

I was not given a blood test; in fact, they didn’t give me anything by IV while there. I should have received a blood test. As if I could not make it easier on them, I have an accessed portacath from which blood flows freely when needed (I’m a hard stick now that my veins have shrunk; I make it a point to have them ALWAYS draw blood and give fluid through it). I only worry about my blood tests because I have started to develop petechiae under my eyes. I’ve also been running low blood counts for the past month. If it was just under one eye, I could attribute it to the fall from my seizure, but I have them under both eyes and it is starting to spread from out under my eye to my ears and other areas on my face. Hopefully it will start to heal and stop spreading as that might indicate a bigger underlying disease. I’m not entirely ready for that quite yet (as if you can ever be ready…).

So that is what I got to do this weekend. I wanted to make it a better weekend than laying around trying to recover the energy lost during the seizure, so we headed out to the tulip festival. I’ll wrap up this update with my favorite pictures from the day. I hope you are all enjoying your weekend and are having lots of happy tummy days~

These people were only a few of the ones that asked to take pictures with Ellie and I. I found the question odd, as I would never go up to anyone else and ask for a picture with their dog, but to each their own!

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I have more to update but that will have to wait until tomorrow. I started a new medication called, Relistor, and I have started seeing new doctors due to some administrative complications. I hope everyone is having a good tummy night ~

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The latest news on the preventable hospital error front is not good: a full-out effort by Massachusetts hospitals to reduce the number of serious medical mistakes they make each year failed to produce any reduction.

The number of Massachusetts patients who were given the wrong medication, had the wrong body part operated on, or were seriously hurt or died from a fall remained essentially unchanged in 2010 compared with the previous year, according to a story in the Boston Globe .

In all, 512 patients suffered from a so-called serious reportable event in 2010, compared with 510 in 2009, according to the story.

Alarmingly, the failure to produce results followed an intense campaign by the hospitals to reduce preventable errors in high occurring areas: falls, wrong medications, pressure sores and surgical mistakes. Hospitals across the country are paying more attention to these areas because of new federal rules that will prohibit hospitals from charging for treatment that was provided as a result of a serious event in the hospital, such as an infection from a bedsore or a hip replacement after a fall.

While hospitals work to reduce medical mistakes from their end, there are a number of practical steps consumers can take to avoid serious hospital errors. Following are seven of them:

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The following was tagged by their site and I thought it would be good for all of us, even the patients, to have a little refresher course. Please, feel free to add your own in the comments below =)

Happy Tummy weekend and try to stay away from those treats! (you know they aren’t good for you) <3

Things doctors say that aren’t helpful.

APRIL 5, 2012

We’ve all had this experience. A well-meaning (we hope) physician says something that sounds like it’s supposed to be helpful but isn’t. Sometimes the effect is to belittle our symptoms or tell us no matter how hard we’ve tried to communicate our experience, the message isn’t getting through.

*I’ll add in a comment or two here. You need to have open communication with your doctors. A doctor once told me you don’t even need to like the guy (meaning my pain specialist and as a side note, why are they all crackheads (jerks)), he simply needs to provide your medication as I don’t feel comfortable. I couldn’t disagree with this statement more. You must at least LIKE your physician or specialist to enable trust, belief and understanding that all make communication possible. If you can’t get it through your doctor’s head, no matter how many different ways you’ve tried, perhaps that doctor is not for you and you need to move on to someone who is. You’ll know when you find them and they will become an entagled part of your life of chronic illness, as you both work through it together.

To be blunt you are the customer (patient) and they are the workers (doctors) and if services they provide are not up to your reasonable standards, find someone else – it is your life, don’t let some crappy doctor belittle you into thinking you aren’t worth saving or if you are not actually sick when your heart tells you otherwise. My pediatrician, Doc Saba (yes I know I am 27 years old) I have known, still talk to and visit when I fly home (I’m talking to you Dr. Saba, if I hear you tell me out of shame, one more time of coming up to my area and not visiting, there will be words), since I was five years old (he always told me that I was going to be a doctor from the very beginning – singling me out from other other brothers and sisters…how he knew is beyond me – I would have become one but am restricted by my illness until I can grab a hold of it and keep it manageable). My gastroenterologist (Dr. David Patterson) I have known for three very wonderful, trying and terrifying years (regarding my recent hobby of collecting bacteria in my ports and body) all bundled up into one. To me they are super important. They know practically everything about me and I trust my lives with them. That is the kind of relationship you need or you will never move forward. If the doctor doesn’t respect you (trust, believe, appreciate), you need to move on; and as another side note, the doctor really has no business being in that profession anyway.

Sometimes, we as patients, can be rude, ugly, impatient and incredibly stubborn, and much of the time we have every right to be those things for far more reasons than I could possibly state here. But is it really worth it? However, it is not a one-way street and perhaps the burden is heavier on the doctors to move past that and get down to the real problem. Medicine is a study of a very complex network we call the human body; one controlled by people and these people are subject to the very things that make them human (they will make mistakes). It does go both ways for communication between patient and doctor to be successful. The patient needs to simply meet them half way.*

1. “You’re just stressed out!” This is usually said by someone who has no intention of doing anything to help with stress management. My impression is that the person saying this thinks that you can talk someone out of anxiety or worry that is likely based in painful reality.

2. “Don’t worry about it.” Closely related to number 1. Often said by a doctor who doesn’t want to answer questions. It is beyond me why doctors would want their patients to remain ignorant about their condition, but I’ve seen it.

3. “You need to lose weight.” If this is followed by reasonable advice on how to do so and an offer of support,” it is highly appropriate. More often this is said and no assistance is forthcoming. Hint to the socially inept doctors out there, saying this or something like “I can see you have a good appetite” during a pelvic exam is not only not helpful it is humiliating. (This actually happened to me when I was 18 years old.)

4. “It’s not your heart.” Often said when the doctor has no intention of helping you find out why you have chest pain. Even less helpful when said to someone who is having active chest pain that is helped but not completely relieved with nitroglycerin and has a history of heart disease. I feel great remorse that I delivered that statement many times in my early career working as a nurse on a cardiac floor. I’m sure some patients were reassured, but others may have felt despair that they were about to be sent home from the hospital (again) with no help for their symptoms.

5. “You may feel some discomfort.” If something is going to hurt, you should say so. This is the worst coming from surgeons who aren’t up front about the usual level of pain and discomfort felt either during or after an upcoming procedure.

6. “It’s going to hurt.” When said with a tone of disgust and no intention of relieving the pain. Even better when followed by, “What do you want me to do about it.”

7. “Cardiac cripple” This is not a medical term and has no descriptive value. A friend of mine says it’s a pejorative term used to describe a patient who has failed to get better despite the cardiologist’s best efforts. Having been described as such to the hospitalist by my old cardiologist (who also had a nurse inform me he didn’t care to help me with disability insurance paperwork because I have “no cardiac limitations”) I am inclined to agree.

8. “You’re going to have to do better.” Said with no instructions for how to do so or even what they are actually referring to. This hasn’t happened to me, but has happened to friends of mine.

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Today has been filled with much frustration. I woke up to my own screams of pain and found out why I was in pain (not from the continuous migraine I seem to be experiencing and have for the past few days). I am in the middle of a bladder infection which proved to be resistant to the medication I was on for the past THREE days and when you couple that with a neurogenic bladder you get a bed wetting situation. Luckily the pain of urination brought me out of sleep early enough to leave only my clothing needing washing. I was then later made aware that my medication was changed and we are hoping this will finally start controlling the bacteria. Based on my last infection, I am on guard in case this bacteria translocates to my kidneys or once again goes septic by infiltrating my blood. Until the bacteria is gone, this will remain a very big and scary possibility. Not only do I have that as a risk of infection (uh, already infected but contained within the bladder) but my surgical wound where they placed my portacath is still continuing to drain. NONE of my other ports or piccs had pockets of fluid that required draining but this one, for whatever reason, is draining. Not a little bit either, but a lot. Enough for every access to require pressure to get it all out. Fact is, my body will just replace it with more fluid; fluid that when accessed is trapped in that same pocket my port is in and become infected.

I had my portacath checked on Monday (4/2/12) to make sure it wasn’t the port itself, that was leaking but after a five hour stay at the hospital, blood cultures and hours of Facebook later, we determined the port is working perfectly and hasn’t moved out of place in any way. So now we just associate the leakage/drainage to the surgery itself. I might have mentioned before but the recent port placement was harder on my body than usual. It has been swollen and bruised and tender since first placed where none of my other ports swelled or even bruised. But with this one you can see it bruising so badly that you can follow the catheter right up my neck and back down again.

With these risks, I guess I will box myself up at home and hope that no infection comes to me because I’m a walking hotel for bacteria right now.

This isn’t the only thing that has me frustrated though. I don’t often get frustrated at tests or the consequences thereof, but what has me frustrated is the stuff that I can’t do right now. I’m still recovering strength, stamina and energy from my brush with death and because of this, I can’t do what I want to do, I can’t do what I need to do and I can’t do what I will want to do in the near future. It is STILL too cold for ME to go outside and walk around. I still require a lot of sleep or I end up cranky and make posts like this. I can’t do much outside the house or I get sick from exhaustion and for whatever reason, my body’s sleep cycle is all wrong. I blame the hospital visits for that. I do what I can at and through the computer. Connecting with friends, making phone calls for appointments or just to say hello, I snuggle with my Ellie and look forward to the few hours my husband is home from work for some real person interaction.

I know it will get better. I know I will get better. I won’t drop the diseases that I have already been diagnosed with but I will get my strength back, my energy back and maybe a little part of my life, dreams and inspirations back. I’m just frustrated with how long it is all taking. And I don’t think I’m the only one frustrated with how long it is taking. Maybe once the infection is gone I can feel less sick and crappy and start doing more but for now…nothing is looking too hot.

I don’t like ending posts on a negative note so let me find a good picture. I have employed Ellie as our transporter of things from upstairs to downstairs by linking it on her collar and calling her around the house. Need your hair gel and you are upstairs…no worries. Wish she could carry the space heaters up and down the stairs. Now that would be an invention.

I had to throw this one on too. A friend’s nursing school class went green for Gastroparesis. I was in the hospital that day but this really means a lot to us. Seeing support from those who do not suffer offer hope that someday, we will be recognized as we should be and a cure or more reliable form of treatment be found.

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The night was very surreal. I would wake up but feel very weird, delusional and disconnected. It was 3:00am during one of these awake moments that my loving husband checks on me. He realizes right away that I was burning up. I’m not entirely responsive but adamant about NOT going to the ER for what is probably just the flu, especially at this time in the morning of February 12, 2012. He is not happy about it either but takes the stand that if something needs to be done, just get it done and over with. Little did he know that many somethings needed doing and it was going to be awhile before they’d be over with. He runs downstairs to get the trusty SpongeBob thermometer and finds out that it read a very convincing 103.6 (both times). That thermometer never works quite right and if it was reading a temperature, then more than likely, the actual temperature was much higher. He says to me that we have to go to the hospital right now. Ugh, I roll over and refuse. My energy at this point is rather pathetic so it doesn’t take much to convince me to grab what I could and get in the car for a ride over to the Redmond ER. *Side note: we will never again be visiting the Evergreen Hospital due to their enormously high error rate when it came to diagnosing and treating patients. So we will take the extra 15 minutes just to be in the Swedish network with doctors we know and trust.*

As I walk in bundled in my favorite blanket, half-awake and probably looking a little like death, the receptionist, upon seeing me, simply says, “Oh no.” Not exactly the words you want to hear and definitely not something that conveys any sort of positive attitude towards this downhill situation. At 3:00am the ER is not all that full and we are seen immediately, stats taken, blood taken, IVs started and the decision is made, though not as hastily as I would have thought they would be, given how obvious it is that I was septic from an infection in my port, to transport me via ambulance (yay, my fourth one) to my favorite hospital, Swedish Issaquah. My temperature continues to rise and my self-awareness continues to decline. I vaguely remember the ride to the hospital, my arrival to the ICU and the number of tubes they placed (urinary catheter, NG tube for suction – my stomach began to fill with fluid at a rate that had doctors overly concerned that I may aspirate that fluid along with it forcing me to use more than necessary energy just to breathe, breathing tubes and many PIVs for fluids, pain medication, broad spectrum antibiotics, etc.).

It would be three or four days before they would get a correct identification on the infection quickly taking my life, and for the antibiotic to bring me back from an almost coma-like state. I remember during the first few days, that I was not breathing well. I was sleeping but in my sleep I hear the nurses telling me to take a breath. For me, at the time, breathing and not breathing were the same. There was no urge to breathe and because of that, I would stop breathing periodically requiring nurses in my room 24/7 just to tell me to breathe. I was in such bad shape that the doctors discussed placing me on life-support. Life-support…in one single night I went from one extreme to the other. I was very unaware of how bad things were, who all was involved, though I do remember Dr. Patterson being there – love his accent, so I never experienced fear, the fear I’d lose my life after so many years I spent fighting for it.

The fog lifted a few days after my mom arrived. She jumped on a plane that same day Victor called her and informed her that I was not doing well. From his voice she could tell things were desperate. I will be forever grateful to have had her there with me. She fought to get me the things I needed. It was the first time I had someone else in my room with me all day. None of my family lives here and Victor has to work. I think it was Friday of that week that I began to stabilize. Well, they had gotten me on the right antibiotic and my temperature lowered to normal for the night. Waking up was a different story. I had begun to spike another high fever, my O2 stats were dropping as my heart rate escalated above 170. I was shaking from pain and fear. NOT ONE NURSE OR DOCTOR responded to my help button. I pressed it several times. Each time I’d get someone talking to me, “OK, I’ll send your nurse in…” and then another 15 minutes go by, “OK, I’ll send your nurse in…” 30 minutes go by and I’m getting worse. Scared to death I’d die alone. It was too early for my mother and husband to be by and my doctors were not yet doing their rounds. It was a half-hour after nurses changed shifts so I know they were around. But they were not by me. I desperately called people just to talk to someone, anyone so I wouldn’t be alone should I die. My husband’s phone is dead, my mom doesn’t answer, but my GI does. I’m in complete tears and hysterical by this moment and told him what is happening, he asks, “NO ONE is in your room right now?” Nope, not a soul. He told me he’d call the hospital. At that point, while waiting for Dr. Patterson to shape up the nurses (Hello, I am in the ICU – why are you all taking so long in the first place!), I called my dad. He is at home because of the flu and wouldn’t be allowed in the room anyway, even if he had made the plane trip with my mother. I told him what had happened and how scared I was and that I didn’t want to be alone. I wanted to talk to someone. He couldn’t handle it. He told me that everything was going to be fine and in that, I found enough peace to end the conversation with him as it seemed to be entirely too much for him to handle, being so far away. I took my camera and made a short video for insurance purposes to prove a severe lack of ANYONE in my room or even at the nurses station which I seemed to have a straight shot of (because those darn nurses NEVER close the darn doors!). It is slightly upsetting but I offer it here. NEVER let your ICU room be void of nurses if you are in shock. It really is common sense but for whatever reason, today, common sense failed them.

*Enter Nurse From Hell – AKA: Crystal* My husband, mother and service dog, Ellie, had already arrived to help calm me down but in strolls Crystal. For whatever reason, before she even spoke to me, she had some sort of resentment towards me. She had no business being a nurse, and an ICU nurse at that. To be a nurse requires feelings, sympathy, empathy and a general care for the well-being of any human that walks through your doors despite their shortcomings or mistakes. She possessed nothing of the sort.

As she walks in, she informs me that the previous x-rays they did last night of my abdomen (yay for paralytic ileus), my PICC line was noticed to be out of place, dangerously close to the apex of my heart (where one of the pacemakers is located and if tampered with could cause the heart to stop entirely), and they could not use it. She then stated that she would be placing another PIV to allow for fluids and medication while we waited on the PICC line nurses to assess and fix my line. Fine, do it – I am in clear need of morning medications (including the life-saving antibiotic) and fluids. Crystal notices Ellie quietly laying in the corner behind Victor’s chair. I’m watching Crystal as she places the WORST IV EVER.

How she managed to find that tiny little vein is beyond me. I can only attribute it to her skill and my clenched fist. Fact is, the vein is small and my veins are already notorious for blowing (infiltrating) and she thought she could run everything through that little PIV, including D10. D10 is basically TPN minus the lipids and a few other things. It is thin enough to be given through a PIV. However, even if it is thin, my vein is still too small to handle it and as soon as she runs the pump, I scream out in pain, crying and pleading her to stop the pump. Slowly she does so and I, not being ignorant in the area of IVs, TPN or the tubing, quickly clamp it off. She gives me the stink eye and tells me not to touch my lines. I tell her then to clamp it and flush it because it is currently burning through my tissues. Crystal simply says, “I’m just following the doctor’s orders.” I don’t care what she is doing, I’m the patient. She clamps the line and flushes it and continues to push through the rest of my medications, one including my pain medication. Before she leaves, she tries to be all stealth-like and flips on the D10 pump while I am distracted. Again the burning, stinging pain comes back. I turn to her and ask, “Did you just turn the D10 BACK ON?” She nods. I said, “well you best turn it off because the pain is making me want to chop off my hand.” “That’s a bit exaggerated,” she says. Oh no you didn’t. I reach over and clamp it myself and then demand she flush it before she leaves. And, she does…so forcefully I notice the pain returning. I yell at her, “not so hard!” “This is just as hard as when I pushed all the other medications,” she lied. By this time I’m hysterically crying AGAIN, in pain and shaking from her mere presence. This has my service dog all upset too, and rightfully so! She is there to protect me. The nurse finishes flushing and leaves the room.

My mother and husband do what they can to calm me down so as to not die from a heart rate that is way to high. The charge nurse comes in and informs me that my service dog needs to be removed from the hospital. He states that a service dog can be removed from a hospital if the presence of the dog makes his staff uncomfortable to the level that they cannot perform their work. He stated that a nurse has complained that my service dog, Ellie…

whose sole purpose in life is to be happy and share that happiness with others, showed her teeth and growled at Crystal. Ha, never heard such a load of crap before in my life! Clearly this is her way at getting back at me for doing um, nothing! I did nothing and now I have a problem and she goes along her merry way. Before the charge nurse leaves I tell him I want a new nurse. He says, “I’ll see what I can do.” “Um, no…you misunderstood me, GET me a new nurse,” I demanded. He leaves the room, Crystal comes in and informs me that I have a new nurse. But not before belittling me some more by addressing my mother with the schedule of doctors appointments and tests that will be run that day. I’m not 2, you can talk to ME. I AM THE PATIENT! I still have a write up to do for her. No need for other ICU patients to be tortured by an arrogant nurse who shouldn’t even be a nurse in the first place. She is totally on my list.

The rest of the stay was pretty normal. I was there from February 12th – February 25th. We had some issues with pain management and sleeping medications but overall, things went as they should. My doctor never fails to remind me how close to death I came during my first week there. I was delusional and very much not myself. He said that if I had come in any later, they would not have been able to help me. My husband and the doctors and nurses of the Swedish Issaquah ICU saved my life. On the day of my discharge it was snowing. It was beautiful and perfect. I went home on IV antibiotics that were delivered via drip for another week and a half. I was then to have more blood cultures done to make sure the antibiotic was successful in eradicating the infectious bacteria. It wouldn’t be until a month or more later that I would receive permission from my wonderful infectious disease doctors to have my port replaced. And I did.

The monkey is its protector. This port placement was unlike any other. It meant something to me, I beat the odds and toughed it out. Simply stated: I SURVIVED!

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A man found a cocoon of a butterfly. One day a small opening appeared and he sat and watched the butterfly for several hours as it struggled to force its body through that little hole. Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and it could go no further. So the man decided to help the butterfly by taking a pair of scissors and snipping off the remaining bit of the cocoon. The butterfly then emerged easily, but it had a swollen body and small, shriveled wings. The man continued to watch the butterfly because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened! In fact, the butterfly spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly.

What the man in his kindness and haste did not understand was that the restricting cocoon and the struggle required for the butterfly to get through the tiny opening were God’s way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Sometimes struggles are exactly what we need in our life. If God allowed us to go through our life without any obstacles, it would cripple us. We would not be as strong as we could have been. We could never fly.

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I became very upset and felt that everything in my body was weakening or stopped altogether. I was not in a place to blog. So that is why it has taken me so long to write.

But, I’m back now. I was just released from the hospital 4 days ago. I was admitted from the ER on 1/4/12 for a suspected portacath infection. I have never had issues with my port until now. Days prior to the admission, I noticed my port had issues flushing. My nurse even said it was requiring more pressure to flush than usual. It stopped drawing blood a few times that month, requiring me to go to the ER and have them re-access and TPA the line. I wasn’t at all suprised they would think infection but when the ER remembered I had a MRSA infection not to long before, they didn’t want to have anything to do with me and rushed me out of the ER (they have a free standing ER with doctor offices above) to the Swedish Issaquah Hospital for further testing and antibiotics. I said that correctly, Swedish Issaquah Hospital. I gave them a second chance. If you do not remember what happened last time, read the previous post. I was totally on them for everything, this time. Making sure I stood up for myself and get what I needed to survive a potential septic attack. I was put on contact restrictions, meaning everyone coming in had to wash their hands, put on gloves and then put on a yellow gown. This isolation was in effect for the entire 10 days I stayed.

Since they couldn’t use my port, I had to be given everything through a peripheral IV line. Those, for me, don’t work very well. The first IV line was placed by a nurse at the ER; they wanted to get me on antibiotics ASAP, so the IV would let them give me a dose before the ambulance arrived. *Sigh*

The nurse that I had made everything worse. I never had issues with their staff at the Redmond ER but here I was, striking out again. My nurse had tremors, and they were very bad. I sort of felt bad for her because I, myself, suffer from slightly shaky hands. But when she made too many mistakes because of her shaking hands, I began to get irritated. So many people would stop by and ask if she needed help (because the process was taking WAY too long due to her tremors – and they knew it too which is probably why they so frequently asked if she needed help) and she’d yell back at them, “I’m FINE!” So she manages to get a peripheral line in on the first shot with minimal discomfort. However, she did not secure the line before she took both hands off the needle to get the dressing and tape and with that, the needle came out. She told me that it was OK and she’d just use the same hole. Um, yeah – if anyone tells you that, don’t let them touch you. She did go through the same hole but of course the vein is bad now and she just dug and dug around trying to get the needle into my vein. I was practically crying in pain when she finally got it in. This was all after she clotted my port. The port was drawing blood and they needed that blood for a culture. It gave enough for the culture and then while drawing regular labs, it stopped. My only guess is that her tremor hands pulled the needle out just enough to look like it is in when it is not. So she had to draw from another vein. With tremor hands, it was another painful process and one that went so incredibly slow. They actually told the ambulance to hang back 30 minutes because she wasn’t nearly close to being done. *Rage*

I have never been so happy to see an ambulance stretcher in all my life. It meant no more sticks with the lady who had tremors, no more unnecessary pain! I got to ride again, in the ambulance. The guy back there was fun. We talked about all the old-school stuff we played with as kids that kids today would not be able to correctly identify. It was raining and the roads were jammed; it was a loooong trip to the hospital. But I was doing relatively fine. I was nervous, however, about how I’d be treated this time versus the last time. I got put on a different floor in a different ward with new people (for the most part). They were amazing. They didn’t take hours to check in on me when I asked for someone and I got my all the medicines I needed when I needed them (things like my depression medication and sleeping medications are on a rather strict schedule and cannot be missed).

Because I was in for an infection and not an ileus, I was allowed proper pain medication to help control it. I had that come every two hours with benedryl every 6 with my zofran. It worked very well. The nurses were even nice enough to help me with showers.

Ellie and my husband were constant visitors. He brought stuff to my room to help make it happier. All the nurses would come by just to see it and I was said to have the “coolest room.” I won’t lie, it was cool. Just because you are on contact precautions, doesn’t mean everything has to be plain.

A few days after I was admitted, they removed my port. I was so sad to see it go. They removed it before the cultures came back because of the intense pain I was describing. They didn’t want to take any chances and really, I didn’t want them to either. A few days after that I got a PICC line so I could run my TPN. Well that was another adventure.

The lady came in to do my PICC bedside. I was not exactly thrilled about this idea. I’ve always had them placed in IR. But OK, I trusted her. Once she placed it she asked me how I felt. I told her I heard something weird and now my neck hurts. I think your line is fine, let me get the X-ray people. Sure enough, the line went straight up my jugular. Not in position! So she pulls it back out and tries again. “Did you hear anything this time?” she asked. No, but now my shoulder that has been unbelievably painful is now in more pain. I told her it wasn’t in place, I know, I can tell. Again with the X-ray and again, not in place. She asked me if we could try again and if not then she’d pull it out to make a midline, and that would allow higher nutrition fluids to be given instead of the regular IV stuff. I’m like no, just do the midline now and I’ll see IR on Monday. Monday was a few days away but I didn’t want to be put through that all over again. She does the midline and later the nurse comes in to draw blood and bam, no blood is coming out so now it is completely useless.

When I finally got up to IR, they just used the same line and was able to put it into my SVC (superior vena cava). Took them like 3 minutes. Now I have a PICC line again.

The only thing I like about it is that it has two lumen. (GO –> HERE <-- for excellent information on Central Lines or CL) Otherwise the downside is that it gets pulled and yanked on by tons of things like chairs, doors, couches and my dog, Ellie. My new port will be placed on the 23rd of January. My ID (infectious disease) doctor said I needed to wait a week after finishing antibiotics before they could put in a new CL. The interventional radiologist decided, along with my GI doctor that a port would be better than a Hickman. My GI has seen Ellie and knows that anything that dangles has the potential of being pulled out. With a port, you don't lose access, you just need a new needle, should it become dislodged, as it has in the past.

I was kept until I was able to control pain on liquid medicine instead of IV. They never did grow anything from the cultures so they have no idea where my shoulder pain came from. It isn't completely better and I'll need to go to physical therapy for it, but it definitely isn't as sore as it was while in the hospital. I'm glad I gave them another chance. I wouldn't have met all the nice doctors and nurses if I went to the one down in Seattle. The Swedish Hospital in Issaquah is now my hospital of choice! And to top it off, they make the best vanilla milkshakes in the whole entire world. Not joking.

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