26 June, 2009

Day from hell

I just am SO wiped out still from yesterday and have this horrid headache now for four days and I'm sure it's all stress.

I spoke to Dr. P yesterday and he said after consulting with some colleagues they agreed that I should have a blood workup to make sure I don't have any underlying blood conditions. The reasoning for this is that because my vessels and tissues are so friable, they don't want me to form a haematoma whilst doing the spinal epidural, as then I would be paralyzed. I appreciate the caution, but it also delays everything. His assistant gave me a list of 3 haematologists but said that I needed to blood taken first so I could bring that with me and to go to my PCP as soon as possible. It didn't make sense to go to the PCP for blood when she had nothing to do with it, but the assistant sounded so sure I said ok. Being brain dead, I just do what I'm told. I rang up Dr. Rosen and her office said to come in. Which I did. And then I sat and waited for over an hour to see her. And whilst she's normally very understanding and accommodating, she was uncomfortable taking blood that she wasn't interpreting and not really knowing what was needed. Which I have to say I agree with. It didn't make sense to me and I did ask Dr. P's assistant over and over if she was sure that's what I should do. So I left and was quite disheartened. I picked up some food on the way back to the office as it was about half two at this point. When I got back I rang the first haematologist on the list from Dr. P. That dude was retired so the put me on to another dr. Of course my luck was that the person answering the phone was on her first day and knew nothing. She said she would have the other girl ring me back when she returned. In the meantime I rang Dr. P's office after finally inhaling my food, and filled them in. I then rang the next haematologist on the list, a Dr. Wu. Thankfully he was able to see me at 16.15!

Now you have to understand that throughout all of this I was under the impression I'd have some blood drawn, wait a couple of days and all would be groovy and I could go get the epidural. You have to imagine my surprise when Dr. Wu, after asking me a ton of questions about bleeding, explained the procedures. He first takes some blood and then sends it off for (I could have this backwards so excuse me) I believe the coagulation studies, which take a WEEK!!! THEN, after those results, he has to send me to a special lab at Beth Israel where they take more blood and do some sort of platelet study, which takes a couple of days. Whilst hearing all of this all my head is doing is calculating how soon I am actually going to be able to get this epidural. And it's not till after the 4th of July weekend by my calculations. All of this make me a very unhappy person.

So after I leave Dr. Wu's office, I ring Dr. P and get to speak to him. I was sort of flipping because no one had warned me about the length of time. He said he has to make sure about this and I do appreciate it because the worst cast scenario is that I bleed and get a haematoma on my spinal cord which would paralyse me. I don't really want that, but at the same time I am losing my mind from the pain. I'm at the point that I'm actually trying to convince myself it's all in my head and I'm imagining the pain. If only! So I ask Dr. P about Dr. Rosen's suggestion on trying neurontin, which he says is similar to Lyrica. I have been SO afraid of Lyrica because I've heard such horror stories. So he said sure he'll ring in a script for me. Groovy.

During the bus ride home though I was debating about it and when I got home I decided to go online and look up more info before I picked up the prescription. Very contradictory reports but some positive about nerve pain (the weight gain totally freaks me out) but in the end I decide to go ahead and try it. Ha, like anything is easy at this point. I get to the chemists and he tells me the doctor requested a specific number of pills, but the insurance co will only fill a lesser number. I said that is fine, as I am only going to try it for a week or two until I get an injection. He says ok, and puts it into the computer, which of course comes back saying that the doctor has to ring the insurance company for prior approval, and that can take 2-5 days. At this point I don't know how I didn't just fall on the ground and start wailing. I think I was too tired.
I rang my mother and ranted for a while, because everything that should just be simple isn't. I hate insurance companies and I really hope the President gets his public health care option, because we really do need to level the playing field here.

So that was my day from hell. I've emailed Dr. P today about the prescription problem, and I'm sure the pharmacist has rung him as well. So now it's a waiting game to see if I will get any relief or I will jump off a building waiting for some.

Venting for the day:
And if I hear one more person whinge about having a cold or the sniffles I just might kill them. Someone on FB yesterday went on and on about having a little cold and how he was sent home from work and was devastated. PERSPECTIVE PEOPLE. I know I'm not as bad as some people, but come on, a bloody cold!?!?!? Get over yourself!

25 June, 2009

Humpty Dumpty strikes again

ARGH! I just want to scream! Or jump off a roof, or in front of moving bus, but there's that daft thing in my head called a conscience that won't let me. I CAN NOT TAKE THE PAIN ANYMORE.
Tomorrow will be FIVE WEEKS of agony with this neck thing. And it's bad. I can handle "normal" pain, after all I've been through I definitely have a very high tolerance, G-d knows, but this is slowly driving me delirious.

I am sad to report that the shoulder cortisone injection and the trigger point injection did absolutely NOTHING NOTHING NOTHING. I emailed Dr. Panagos on Monday and didn't hear back, he's busy I get it but I'm being a selfish person for once and need help. Tuesday I rang his office, and his assistant said he was on the phone but would ring me back directly. Unfortunately he didn't get to until Wednesday am. He did leave a message apologising and I rang him back as soon as I received it. He asked me a bunch of questions and agreed that something needs to be done. I have no life, I get to work, by about 16.00 I'm dying in agony, then I go home directly after work and lay on the couch until bedtime, and in the middle drink wine and take klonopin hoping it will help me sleep. I still can't even lie flat on my back. Anyway I digress. Dr. P said he had put a call into Cornell for a consult as he wants me to have the spinal epidural in a hospital setting. I'm ok with waiting an extra day or two so it's done correctly but I need to know that it's going to be done soon. He said he'd ring me back and I told him I'd be in the office until 16.00 and then had a hand dr appointment and he could ring me on my mobile. Sadly I did not hear from him at all. I ended up sending him an email around 20.30 asking if he had "any news at all???". My mother laughed at that. Hey, I'm desperate. I did ring his office about 20 minutes ago and spoke to his assistant. She said he was doing a procedure and would get to him as soon as possible. I said even if he just has a message and she rings me back, I just need to know there is a light at the end of the tunnel because I'm in misery. I did apologise for being completely brain dead as all this pain has made my brain turn to mush, even more than normal!

On another note, I saw Dr. Melone yesterday. I've been putting off this appointment because last year he said if the cortisone injection didn't work I'd have to have surgery. After my trip to London though and only using my big camera for 3 days, then suffering for a week after, I had to sort something out. At least the surgery is much more minor that the last 4, and the recovery seems to be quicker. I will have a splint on but will be able to use my fingers and go back to work in a day or so. I need to find out how long it will take for my hand to be in "working order" as well as if I will need PT after. Both from a time and health insurance perspective, since they only give you a very limited number of PT visits TOTAL per year. That might work for regular people but not the special ones! I also can't schedule it till I have this back thing sorted out. I can't believe I have to have another hand surgery. It didn't really sink in until today.

Anyway that is where I am at the moment. At least I have a gorgeous new niece and brilliant nephew to divert me on occasion.

18 June, 2009

EDS

Was reading another blog by an EDS sufferer and thought she described it as basic and easily as possible, so wanted to copy it because it's exactly the same for me. For her complete blog check here.

"Due to the EDS, every collagen cell in my body is faulty and is programmed to be too stretchy and ultimately becomes like an old stretched out rubber band. Normal rubber bands are tight and when you stretch them they bounce right back to their previous shape. EDS sufferers have collagen that is already over-stretched, so when you stretch it out again, it does not bounce back to its original shape, but stays lax and loose. Therefore, we’re super-flexible…but pushing our joints to their limits (as with stretching, yoga, Pilates, heavy-lifting) does long-term irreversible damage.

Practically speaking, this means that my joints are all incredibly unstable and frequently dislocate. Some of my joints bend completely backwards (I can do neat party tricks like bending all of my fingers to touch the back of my hand) while other joints like my wrists and knees bend about 5-10 degrees backwards. The muscles around every single joint also tend to tighten way up, to do the job that my tendons and ligaments aren’t doing: keeping my skeleton in one piece. Dislocations and always-tight muscles = whole body chronic pain...

Think of EDS like extreme rheumatoid arthritis in every single joint, with the addition of random dislocations. And “every single joint” means just that: fingers, wrists, elbows, shoulders, ribs, vertebrae , hips, knees, ankles, toes, etc. People with Ehlers-Danlos Syndrome experience acute chronic pain in some or all of their joints and experience neuropathic (nerve) pain in some or all parts of their body, and some even have heart defects that can cause sudden death. Most of us have additional problems with vision, digestion, migraines, pregnancy, and our jaws and teeth. It's an all-encompassing disorder. I have the "Hypermobility Type" of EDS, and my most serious symptoms are in my entire spine, hands, wrists, ribs, knees, and hips. Thankfully, I do not have the "Vascular Type" of EDS, which can cause sudden and early death."



Needles

Saw Dr. Panagos yesterday and he feels it's a shoulder & a neck issue. Of course, why should it only be one? Anyway, we agreed to do a cortisone injection into my shoulder and a trigger point injection into the muscle near my neck. He said one of his patients had a similiarish situation and they did this and it worked. He's quite weary about an epidural for my spine because of the HEDS (Hypermobility Ehlers Danlos Syndrome) as he says that the tissues in the body have easy friability and he doesn't want to make things worse in the long run.

I asked him what we could do if this works to prevent it from happening again. He said that he wants me to strengthen but no flexibility. He suggested Pilates, and I told him my hip surgeon told me not do that, but he said just do the strenghthening bits. When I feel better I will get out my old Pilates disc and see what's there to work with. I also asked him that what if the injection helps my shoulder but not my neck, and he said last resort would be the spine injection if I am still in agony. Fun stuff!

Dr. P also asked if I have been able to find out any biological information on my birth family. He said it would be very good to know what their health situations are. I told him that there is a group in NY fighting for our records to be open, and G-d willing it will pass on the floor this year, so perhaps in a year I will have some information. If you care to help, please get the information here, and help contact the key reps and senators in NY and say you support senate bill S5269. We need our bio/medical info - especially people like me!

Today I rang my chiro to update him and I will be going to see him next Thursday. He wants me to give everything a chance to work in and settle down. I am praying SO hard that this will work. Next Wednesday I have an appointment with my hand surgeon to see about my right hand/wrist. ARGH! It never ends!

16 June, 2009

Good and bad

Well it's been quite a weekend. Thursday's prep was okay, it definitely could have been worse. I took the two tablets that came w/ the prep at noon, for lunch I had jello and 8oz of broth around 14.00 and around 16.30 started to cramps all over. I figured I should go home then in case they got worse. I started the drink about 17.15 when I got home, just wanted to get it over with. Unfortunately the doctors office said I couldn't take any valium that night to help sleep so I knew it was going to be a rough time. I drank about 8 oz. every 10-15 minutes. I made sure it was cold and I used a straw and put it way back on my tongue so the taste wasn't as bad as it would have been. I also had lemon sucking candies between each glass and that definitely helped. A few times my throat just closed up and I had to spit it out - it had a mind of it's own. I didn't really have to go to the loo for over an hour, and I was pretty much done with it by then. On and off for a little while and then just gassy for the rest of the night. I slept for a little while but was up for good at 3am! My mother was sleeping over and she woke up around 4.30am and we were up for the rest of the am.

We left the house extra early at arrived at the doctors office at 7.50am for an 8.15am appointment. Unfortunately we were told after a few minutes that the doctor had been called into emergency surgery. It happens. I said I really didn't want to have to do the prep again and they assured me they'd get the procedure done that day, and to come back at noon. I was none too happy, between my neck / shoulder agony, starving and lack of sleep. We went all the way back home and miraculously I passed out for a couple of hours. Before we left to go back to the doctors I rang to make sure he was still going to be there, and was told yes, definitely come in. So off we went again. When we arrived at exactly noon, I had a funny feeling. By 12.23 I told my mother that in 7 minutes I was going to go postal. At this point I was beyond hungry and in a lot of pain w/ my neck. Then one of the staff asked me to come to the back with my mother. I knew that wasn't a good sign. He said the doctor was still in surgery and they were expecting him at 14.30, but there was no guarantee. I could 1)wait, 2)wait for another doctor but that wouldn't be till about 15.00 or later, or 3) reschedule. I said 3 wasn't an option as I barely have any days left off and unless they were going to pay me, it wouldn't work. Wasn't keen on a different doctor doing it, but the main thing was it was even a longer wait. I went with my gut and said I would stick it out for Dr. A. Thankfully they also let me take a clonazepam to relax and gave me an ice pack for my neck. For the next two hours my mother and I sat in the back waiting. Thankfully at 14.35 one of the staff came back and said to change. I let out with such a scream! Who would ever have thought I'd be that excited for a colonoscopy. When the doctor came in I gave him a kiss! He was v. sweet and said he wouldn't have not shown up for me. I really do like him, it's so hard to find good doctors and I am v. lucky I have a few v. v. good ones. They knocked me out and all was over within half an hour or so. Dr. A said I had a v. good looking colon and he had taken biopsies but really didn't think they'd say anything. So it's v. good all looks well but we still don't have an answer as to why I keep getting the peri rectal abscesses. Oh well, I've never been easy to diagnose so why start now?!?

After we left the office on the way to get some food, I received a call from Dr. Panagos' (physiatrist) office saying that they would have to reschedule my appointment for the 16th to the 22nd. I nearly lost it and started crying. I said there was no way I could make it another week and a half without some pain relief and please to sort something out. They asked if I was an existing patient and I said yes, and then they said they'd have the doctor ring me. It was already about 15.30 at this point and I didn't think I'd hear from him by the end of the day.

Amazingly he rang me on Saturday am. He even apologised for ringing on a Saturday. I told him he could call me whenever he wanted! He suggested taking Naproxen 500mg twice a day (not doing a damn thing) and taking two valium for sleep (doesn't help, the clonazepam seems to work better but still not a great sleep). I told him my MRI was scheduled for that afternoon and he said that was good and he should have the results by Tuesday. I did email him yesterday to tell him how painful the MRI was, and that the hospital said the images would be online by Tuesday (today) morning at the latest. The last time I had one 8 months ago for my neck, lying down didn't hurt anything like it does now. 20 minutes of lying flat on my back almost killed me. I could barely move my arm and neck after the test and the tech even had to help me up. I was such a wreck for the next day even! They did give me a disc then with the images but I have no idea what that means. Dr. P emailed me back last night and said he'd ring me today after he saw the images but sadly it's 15.50 and I've still not heard from him. I did leave a message with his nurse but haven't heard from her either. I am just hoping he has a solution for pain relief and we can schedule it soon so I have something to look forward to, because I am so wiped out from this pain I just keep wishing Henry VIII was still around so he could chop my head off!

And the best news of all has nothing (sadly) to do with my health but it's still amazing. I am an aunt again! Now I have a beautiful niece, she was born v. v. early on Saturday!


11 June, 2009

Going on week no. 3

with the neck and shoulder pain. It's not gotten better at all. Last week the physiatrist gave me a taper pack of prednisone. Did absolutely nothing. Nil. Nada. Zippo.
I spent the wkend at my parents trying to not move b/c when I move it hurt more. I tried the shoulder sling but couldn't really tell if it made much of a difference or not.
Monday I rang the physiatrist and made an appt for next Tues, the 16th. It was the first available. Tuesday I was still dying so I rang back and got his nurse - yay a live person. She was very understanding and helpful and said she would talk to him and get back to me. She did in a couple of hours and asked about the pain, if it was the same as back in Dec. I said no it's worse, so she said the dr wants me to have another MRI of my neck. I asked if we should do my shoulder but she said he's pretty sure the pain is originating from the spine, so that's what we'll do. It's scheduled that for this Saturday. In the meantime he gave me Valium to take so I can sleep. I took one last night at 21.00 and ended up waking up at 5 this morning. When I got up to take a shower I was loopy and walking into doors and dizzy and thought I'd fall down in the shower. How can people enjoy this feeling? If it at least got rid of the pain, then I might not mind as much. Anyway I hope the MRI results are quick and that there is something the dr can do on Tuesday to get rid of this major pain because I can't take much more of it, mentally, emotionally or physically. Once we (hopefully) sort the pain out then we have to figure out what to do next. It's one thing having stenosis, but it's another when you have HEDS thrown into the mix. None of the normal options seem available.

Today I have to do the prep for the colonoscopy tmrw. I am pretty nervous since just sitting kills my neck and back and I know I'll spend most of the evening in the loo. Oh well, at least I'll get it over with. I have to say though reading about this HalfLytely stuff does put one off, it sounds so gross. I had to do this once before but it was about 15 yrs ago.

08 June, 2009

Living with Invisible Illness: 5 Ways to Get Over Aggravations

Looking good when you feel terrible could be seen as a blessing. When you live with chronic illness, however, it can also cause a lot of resentment and misunderstandings.

"You look so good! You can't be as bad as you say. You look perfectly healthy." "You think you have fatigue? Try working full-time plus having four children! Then you'll know what chronic fatigue is." "I think you're spending too much time thinking about how you feel. You need to just get out more." "If you really wanted to get well, you'd at least try that juice drink I gave you last week. It won't hurt to try it."

And the comments go on. . . and on.

And it hurts.

You may be surprised to hear that nearly 1 in 2 Americans has a chronic illness or physical condition that affects their daily life. The range of diseases and included everything from back pain to fibromyalgia, arthritis to cancer, and migraines to diabetes. Oftentimes, one of the largest emotional stumbling blocks for people who suffer from illness is the invisibility of the pain. About 96% of illness is invisible. This means that the person who suffers from the chronic condition show no outward signs of physical pain or disability, nor does he or she use an assistive device like a walker or wheelchair. But the incredible pain each day can be disabling within the confines of the home.

If you have an invisible illness here are 5 ways to forgo some of the frustrations:

[1] Free people from the expectations you typically have had of them. This step will likely be a life-long process, but without taking it, you will consistently find that people will always disappoint you. No one is perfect-even you! And it's important to remember that those with illness do not understand the difficulties that our friends are going through, such as a divorce, the death of a loved one, an ill child, a loss job, etc. Your illness is momentous in your life. And even though people do care, they still will have significant things going on in their own lives. Don't hold that against them.

[2] Find supportive friends. Is there someone in your circle of friendships who is constantly belittling you or suspicious about your illness? Is he is beyond listening and instead spreading gossip about how he saw you at the grocery last week and you looked perfectly fine? This should be a relationship to let go of or, if it's a relative, distance your self as much as possible. Illness can help us easily prioritize our friendships and that way we can spend our limited energies with those that mean the most to us.

[3] Find joy in your blessings. Rather than thinking about how badly you feel, find ways to bring more joy into your life. Appreciate the little things. Observe what you are doing when you have a burst of unexplained energy and realize that there lies your passion. Focus on bringing more of this into your life. You may not be able to garden like you once did, but you can grow a few potted flowers or hire a neighborhood teenager to plant some vegetables and set up an automatic sprinkler system for them. Or if you want to dream big, start a consulting business for want-to-be gardeners.

[4] Use your aptitude and talent for things you have a personal interest in. Too often we feel like the skills we learned in the workplace are no longer valuable. Perhaps you've always wanted to write children's books or be a business consultant. Get involved in your community and do some volunteer or part-time work to continue to grow professionally. Rather than focusing on what others aren't doing to comfort you, follow your dreams and give that gift of comfort to yourself.

[5] Encourage someone else. You personally know how hard it is to live with illness and to feel like no one understands. So take time to be vulnerable with someone else who is going through this. Whether you meet someone through an online group such as National Invisible Chronic Illness Awareness Week's message boards, or through your local support group, volunteer your time and expertise (yes, you're an expert on living with invisible illness!) and use it to make someone else's journey easier and you'll find your own is more enjoyable too. Are you frustrated that no one at your church thinks your invisible illness is real? Rather than stop going to church, find ways to educate them, such as a column in the church newsletter or brochures about National Invisible Chronic Illness Awareness Week. These say what to say/not to say to a chronically ill person.

None of us can change another person or make someone care-but we can educate them and give gentle advice. We must also continue to work on ourselves. You'll find that even when you want to change it can be a real challenge, requiring discipline and motivation for a better life. You owe it to yourself to find joy despite your illness, and by focusing on how you can change your circumstances, instead of change other people, you'll be much more personally rewarded.


Great suggestions on ways to help a chronically ill friend

  1. 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.
    //www.sxc.hu/photo/868293
  2. 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.
  3. 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?”.
  4. 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.
  5. 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.
  6. 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.
    //www.sxc.hu/photo/945068
  7. 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.
  8. 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.
  9. Ask, “Do you have an errand I can run for you before coming over?”
  10. “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.
  11. 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.
  12. 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.
    //www.sxc.hu/photo/114725

  13. Buy them things to cheer them up after you’ve gone. An inexpensive colourful top, a bright umbrella, a teddy bear or cartoon….
  14. 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!
  15. Understand that they live in a constant state of making decisions for which there is no guarantee they are making the right choice.
  16. 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.
  17. 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.
    Reading at Stock Exchange

  18. 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.
  19. 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.
  20. 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.
  21. 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).
  22. 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.
    //www.sxc.hu/photo/953849

  23. Simple acts of kindness like holding the door open (they can be very heavy!) are lovely.
  24. Never call them names related to their disability, like “hop-a-long” - at least not until they do it first and then be careful.
  25. 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.
  26. 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!
    Tissues picture from Stock Exhange www.sxc.hu

  27. 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.
  28. 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.
  29. 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!
  30. 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.
    //www.sxc.hu/photo/686128

  31. 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.
  32. 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.
  33. 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.
  34. 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.
  35. 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.
  36. 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.
    //www.sxc.hu/photo/962543
  37. 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!
  38. 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!
  39. 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.
  40. 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.
  41. If you’re coming for a visit or even just to go out somewhere, call and check it’s still okay before you leave.
  42. 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.
    //www.sxc.hu/photo/579286
  43. 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.
  44. 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!
  45. 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!
  46. 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.
  47. 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.
  48. 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 gettign a diagnosis, appropriate treatment and coming to terms with their illness.
    //www.sxc.hu/photo/753933
  49. 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!
  50. 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.

Doorways of Support and Inspiration: Healing Mind, Body and Spirit

Doorways of Support and Inspiration:
Healing Mind, Body and Spirit

Nine Ways to Maximize Your Misery: The Don’ts of Chronic Illness (and How to Avoid Them) Tom Robinson

The chronically ill can make themselves unnecessarily miserable, and in this article I’m going to tell you how. You will see the traps that the chronically ill can fall into, and by consciously avoiding them, you will be able to decrease your suffering dramatically. Below is a short course on what NOT TO DO:

1. Be critical of yourself for having your illness, and for not being able to do those things in just the way you did them before. This is an effective misery maximizer because it builds on the sadness and anger you may already feel about having your disease.

If you want to maximize your happiness instead of your misery, here’s a little exercise that will help. First, get a paper and pen and make a list of the negative or self-critical things you’ve said or thought in the last 24 hours. Whether it’s “I’ll never feel well again,” or “these people don’t care if I live or die,” write them all down. Next, pretend that a very close friend who has the same chronic illness you do and is suffering the same way you are is the one who said or thought those things you’ve written down. Now, for each item, ask yourself what you might say to him or her.

My guess is that you’ve come up with specific ideas for your friend on how to be kinder, gentler, and more forgiving to him/herself. You might even have wanted to tell your friend how much you admire the ways he meets the challenges of living and dealing with chronic illness. What advice would you give your friend when s/he begins to feel so low, and so self-critical? What are the remarkable ways in which your friend manages his/her illness? Finally, be your own good friend, and say these things to yourself.

2. Find as many ways as you can to relinquish the control you have over your illness and your life. This is an especially useful misery maximizer for the chronically ill. Their illnesses almost always result in a loss of control over parts of themselves and their lives.

Retaining a sense of that control is one of the essential ingredients of emotional well being. A well-known study of people in convalescent hospitals by Drs. Ellen Langer and Judith Rodin demonstrated that relatively small differences in control--such as what kind of houseplant to have and which night to watch a movie--made a dramatic difference to the happiness, alertness, and longevity. The study can be usefully applied to the chronically ill. It shows how much difference each small increment in control can make to an overall sense of well-being. Fortunately, there are opportunities for gaining more control in our lives if we can only become aware of them. Another exercise will help: First, make a list of 10 decisions you make every day. (Write down more if you like, so that you can see how much control you do have.) Second, armed with that list as a good beginning, begin to add one or two new decisions each day. Whether it’s choosing something simple like what to wear, or something weighty like which physician to see, the more control we are able to exercise in our lives the happier and emotionally healthier we’ll become.

3. Don’t let yourself feel or express gratitude to anyone for anything. A recent study by Dr. Robert Emmons at the University of California, Davis showed that gratitude improves emotional and physical health. So to maximize our happiness instead of our misery, expressing gratitude for the things and the people in our lives can really help.

One short exercise is to write down ten (or more) things for which you feel grateful. Maybe they include a comfortable bed and a good night’s sleep, or maybe a cloudless blue sky, or eggs cooked the way you like them. People can go on your list too.

The next step is to express gratitude for each item--whether that means a silent “thank you” inside your head--or gratitude expressed out loud to another. Saying “thanks” keeps us human, and helps keep us happy and healthy.

4. Don't have a sense of humor. This is another effective misery maximizer. A sense of humor and an appreciation for the absurdities of the human condition aren’t just things to possess; they are resources to use. In this case the admonition to “use it or lose it” is absolutely true, especially with a chronic illness.

Take out that pen and paper once more for another exercise: Write down ten things about life with your illness that a kind-hearted comedian could make something of. If you twist it just a little, even your adversity has a comic aspect to it. Once you find it, use it to make yourself feel better, and manage that next challenge with a lighter approach.

For an example, consider the adversity that Captain Al Haynes, pilot of United Airlines Flight 232, faced. His plane was carrying 285 passengers when an engine came apart and disabled all three hydraulic systems, rendering the plane virtually uncontrollable. By heroic aeronautical skills the crew was able to erratically weave to the Sioux City, Iowa airport to attempt an emergency landing. The tower controller told Captain Haynes he was cleared to land on any runway. Haynes response was, “Oh, you want to be particular and make it a runway?”

Do your health a big favor, and…lighten up.

5. Don't take time for yourself. It’s easy to see how following this dictum is good for maximizing misery. In our culture, women, and especially mothers, have a head start in using this misery-making suggestion. They learn that everyone else comes first.

While it’s easy to see that following this dictum is good for maximizing misery, what’s often hard to see is the possibility of finding a way out, without being punished by others, or feeling guilty yourself. Take out that paper and pen again: Write down 10 small things that you could do for yourself that make you feel better. Now, we’re not talking trips to Italy here, or major life changes, so keep it small. You want those things to be easily done without a lot of fuss. Armed with your list, you can proceed to the next step: DO ONE SMALL THING A DAY TO MAKE YOURSELF FEEL BETTER.

6. Don't take responsibility for your medical care. Obviously if you don’t get good medical care you’re going to be sicker and more miserable than if you do. What’s not so obvious is how many things you can do to greatly increase the quality of the care you receive.

Our culture has traditionally held doctors in high esteem, even awe. For many people this view has obscured the fact that the usual customer satisfaction rules apply to doctors just as they do to other service providers. For example, we demand a certain level of both courtesy and competence from our mechanic, and if we don’t get it we find another. I’m not suggesting that we change doctors the first time we don’t like what they tell us, but as consumers we need to remember that we always have the right to find someone who will serve us better.

The other thing we can do to get better medical care is find out as much as we can about our disease, treatments for it, and the latest research on it. The internet is an extremely powerful tool that can help us do this, and I’m sure many of you have made good use of it. For those of you who haven’t, I strongly encourage you to do so. The links on the www.chronicillnesscoach.com web site are a great place to start.

7. Dwell on your illness day and night. If you’re chronically ill, this is one of the easiest ways to get seduced into misery. When you’re sick all the time, it’s hard not to think about your illness all the time. Setting yourself free from a preoccupation with illness is sometimes tough.

One method that can help comes from a modified Vipassana meditation technique: Uncap that pen, and list the recurring thoughts you have about your illness. Whether they’re thoughts of feeling sorry for yourself, thoughts that you’re no longer attractive, thoughts of being afraid about the future; whatever they are, write them down.

The next step is simple: every time you have one of those thoughts, just count it by making a tick mark next to it on your list. You get to decide for how long to keep counting the thoughts. I suggest 24 hours.

This technique does two valuable things. First, it lessens the negative effects of the thoughts because it helps you step back from the emotion associated with them. Second, it allows you to let go of those negative emotions. Over time what usually happens from this simple act of counting those thoughts is that they and their corresponding emotions come up much less frequently, and you find yourself feeling freer. SO START COUNTING!

8. Isolate yourself. This is an especially good misery maximizer for several reasons. Isolating yourself makes it much easier to forget that no matter how serious your disease is, no matter how bad your symptoms are, there are always people who have it much worse. While knowing that won’t make your illness better, it will help put it in perspective.

RemedyFind.com is a web site that records people’s evaluations of the effectiveness of various treatments for different chronic illnesses. It shows that the top rated remedy for three of the most prevalent chronic illnesses--multiple sclerosis, lupus, and Crohn’s disease--was emotional support—the opposite of isolation. It got a higher rating than all of the drugs that are prescribed for those diseases.

The internet can be a great help in preventing isolation and getting emotional support. For example, the www.chronicillnesscoach.com web site has links to several chat and email groups, where you can connect with others who have the same chronic illness challenges and concerns that you do. Also, many communities have support groups for people with chronic illnesses. Your community’s mental health association will know what those are.

9. Don't imagine a future beyond your illness. In order to have meaning, life has to be about more than just our immediate concerns. This may seem obvious when we feel well and happy and able to look forward to something, but when we are ill, life narrows, and our vision grows weak and myopic. Just when we need the future most, we tend to abandon it – and all the hope and excitement that can go with it.

Here is a final exercise to stop the tendency we have to narrow hopes and dreams: Write down ten (or more) things that you can look forward to doing in the future. They can be little things like a phone call to relatives, a planned outing, or that warm bath you’ve been wanting all day. They can also be bigger things such as activities that contribute to people and causes that are important to you--maybe cleaning up the environment, teaching reading to illiterate adults, or even taking part in finding a cure for your own illness. After you’ve made the list, read it. Think about those things that you are looking forward to and remind yourself that you could make a list of those big or little things every day. And maybe that’s the thing to do for a week or so until you get the knack of looking forward. After all, futures are made; they don’t just happen.

While you’ve still got that list, you may want to think about writing down activities that contribute to people and causes that are important to you. You may feel strongly about cleaning up the environment, teaching reading to illiterate adults, or even taking part in finding a cure for your own illness. People who are able to do these kinds of things are making not just their own futures, but their communities’ as well.

You’ve now learned several exercises that can improve the quality of your life. These exercises are only one of the ways that you can overcome some of the debilitating effects of chronic illness, and stop cold that misery maximizing. And that’s the secret, isn’t it: To rob the illness of its power to shape your life. Only you should have that power, and you can.

Chronic Illness (CI) Coach Tom Robinson provides coaching for people suffering from chronic diseases, such as multiple sclerosis, diabetes, arthritis, Crohn’s disease, cancer, lupus, and ulcerative colitis, who want a better quality of life. Tom gives the chronically ill understanding, support, and encouragement to meet the challenges of their illness, start living more fulfilling lives and create the life they deserve—despite their illness. He’s especially effective coaching them because, having Crohn’s disease himself, he knows firsthand the ordeal that living with a serious chronic illness can be. And he understands the standard and alternative medical systems, and knows how to find and get the best possible care and treatments. You can reach Tom either at tom@chronicillnesscoach.com or at 408-398-9422 or visit his website at http://www.chronicillnesscoach.com

Interesting article

As I've been feeling like such crap and I came across this, thought I would share.

http://www.alpineguild.com/COPING%20WITH%20CHRONIC%20ILLNESS.html

I have to say that the biggest thing that does annoy me is when people - and one person in particular that hasn't a clue what life is like in this body - have the nerve to tell me to stop complaining and don't talk about what is wrong with me. I really don't complain that much, and when I'm not having an acute crisis (unf this seems less often) I try to go on with as little nerve as possible.

As Martin Gore wrote: But before you come to any conclusions
"Try walking in my shoes
You'll stumble in my footsteps
Keep the same appointments I kept
If you try walking in my shoes"

03 June, 2009

Nothing changes

Unfortunately I was in agony all weekend. I was back at the chiro yesterday and today. Yesterday he suggested contacting my physiatrist because even though we've loosened up the muscles, the pain has not gotten any better. I was able to speak to Dr. Panagos today and he put be on Prednisone for a few days. You take 6 the first day, then 5, then 4, etc. I drove the pharmacist lady nuts because I kept ringing to see if the script had been called in. Finally it was about 15.30 so I went across the street and picked it up. I took 6 pills around 16.00 and so far nothing. I read online sometimes it can work v. fast, which is what my dr said, but he also said it could take days. I don't have days! I am so worn out from no sleep and all this pain that I just want to scream (I've been doing the almost daily crying meltdowns already).

I asked him about an injection like I had in my hips, and he said something similiar could be done but since it's the spine it would be in at least two joints, as opposed to the one. He said if the Prednisone doesn't work (G-d forbid!!!) then that would be the next step.

Please please please let this work and quickly. I am truly at my wits end!