A fellow blogger started this petition to the New South Wales, Australia government. They currently have only 2 beds to accomodate people with such things as eating disorders. They only go to the most acutely ill patients so many who really need treatment go without because they are not sick enough! Please sign this to help them out.
So I want to do a little project. I want to write a comprehensive post to help those that are supporters (be they friends, family, lovers, etc) of people with chronic illnesses understand what it feels like to have one and why we might not feel ok enough to go do things with people or even just get out of bed. I want some personal testaments to go along with it to make it more relatable. So if you be so kind, comment and give me your “It feels like…” statement. A psychological illness still counts, as they can easily impede your life.
Here would be mine! It feels like… getting hit by a truck. Pain all over your body as if I worked out all day for a week straight. A headache as if a bomb got set off inside my skull. The fatigue is so extreme that it feels like it is day three of no sleep… every day! My brain is always in a fog and haze, I can never concentrate, and retaining information is a monumental task.
Tell me, what does it feel like for you?
You can do your part to help out your body. Be as healthy as you can be, because your body already has enough to deal with. Give it a helping hand by taking care of your body. I know if you feel like crap, the last thing you want to do is eat healthy. But in the cases of some illnesses, like Fibromyalgia, eating healthy and maintaining a healthy lifestyle is very important.
Start by trying to eat right and maintain a healthy weight. Eating natural or less processed foods is generally the best route, but people generally don’t have time to make their diet ALL natural. So the best option would be to try to balance the amount of natural and processed foods you get.
Protein is one of the most important things you can eat, but make sure it’s LEAN protein. One of the most important factors about protein is that it makes you feel full and satisfied so that you don’t overeat. You can also consume up to 35% of your calories with lean proteins. What contains lean protein? Try SKINLESS poultry, eggs, beans, nuts, shrimp, crab, fish fillets, lean cuts of beef, and pork tenderloin. If you’re getting a meat, make sure you trim off any visible fat and control your portions. A filet mignon may be a good lean beef, but not if you eat 12 oz of it.
Whole grains are also a good filler and a good replacement for things like white bread. White bread is by no means healthy. The carbs from white bread tend to be processed just like your body would process sugar. Then again, most carbs in general aren’t all that healthy. Try replacing regular noodles with whole wheat/grain pastas and normal white rice with brown. And of course, throw out that white bread for whole grain bread!
Fruits are great for many things, one of them being a supplement for something sweet. If you’re like me, your sweet tooth can get you in trouble. Fruit may naturally contain sugars but not the harmful kind and amount contained in, say, a chocolate cake. Plus they are low in calories AND packed full of nutrients- some with disease-fighting components. Fresh and frozen are better than canned, as canned tend to be stuck in syrups. However, you can sometimes get them in natural juices or in light syrup. Dry is also a good bet, but look on the package and make sure it’s JUST dried fruit and they didn’t add a ton of sugar. They’re also multi-functional. Drop them in a cup of vanilla yogurt or toss them into cereal.
And of course you can’t forget your vegetables. Stay away from the starch heavy ones, though, like corn and potatoes (except sweet potatoes). Be wary of canned vegetables. They tend to be very high in sodium. You can fix this, though, by rinsing them thoroughly. Fresh and frozen are still the best options. So far as frozen goes, there is a boom lately of steamable pouches. Now remember, veggies aren’t healthy if you load them down with butter and half a ton of salt. Try to utilize other things like vinegar, balsamic vinegar, wine, garlic, etc. You can also make a nice salad but be sure to use nonfat or low fat dressings.
Now a lot of our food has vitamins in them and these vitamins can be super valuable to people with chronic illnesses, as they often promote health to certain organs or are disease fighting all together. Let’s check out our common vitamins:
Vitamin A:
Helps cell production, vision, bone growth, and tooth development; stimulates immunity; helps maintain healthy skin, hair, and mucous membranes. Can be found in things like- cantaloupe, grapefruit, tomatoes, watermelons, broccoli, many kinds of squash, carrots, cabbage, peas, pumpkin, spinach, sweet potato, Brussels sprouts, chestnuts, pecans, pistachios, cheddar cheese, cream cheese, cow’s milk, eggs, tuna, goat milk, and goat cheese.
Vitamin B1:
Essential in energy production as well as for the functioning of the heart, muscles, and nervous system. Most fruits and veggies are not a good source of this. Can be found in things like- avocado, dates, grapes, grapefruit, mango, orange, pineapple, pomegranate, watermelon, asparagus, Brussels sprouts, butternut squash, corn, lima beans, okra, peas, sweet potatoes, brazil nuts, cashews, chestnuts, hazelnuts, macadamia nuts, oats, peanuts, pecans, pistachios, brown rice, rye, wheat, beef, cow’s milk, catfish, salmon, tuna, goat milk, pork, soy beans, soy milk, yogurt, duck, chicken, black beans, black eye peas, kidney beans, navy beans, and white beans.
Vitamin B2:
Plays a role in energy but is also important for body growth, reproduction, and red cell production. Can be found in things like- Avocado, banana, dates, grapes, mango, pomegranate, artichoke, asparagus, Brussels sprouts, lima beans, mushrooms, peas, pumpkins, winter squash, sweet potato, almonds, chestnuts, oats, rye, wheat, beef, cheddar cheese, cottage cheese, dark meat chicken, eggs, herring, salmon, sardines, tuna, goat milk, goat cheese, lamb, pork, soy beans, soy milk, turkey breast, veal, yogurt, beef, fava beans, navy beans, and pinto beans.
Vitamin B3:
Important for conversion of energy and for the function of the digestive system, skin, and nerves. Can be found in things like- avocado, dates, mango, peach, artichoke, butternut squash, mushrooms, okra, peas, pumpkin, many squash, sweet potato, barley, peanuts, rye, sunflower seed, wheat, beef, chicken breast, dark meat chicken, anchovies, catfish, cod, herring, perch, salmon, sardines, tuna, lamb, pork, turkey, veal, beef, fava beans, split peas, and soy beans.
Vitamin B5:
Helps with the metabolism of food and in the formation of GOOD cholesterol. Can be found in things like- avocado, dates, grapefruit, pomegranate, raspberries, watermelon, broccoli, Brussels sprouts, various squash, mushrooms, okra, pumpkin, sweet potato, chestnuts, oats, rye, sunflower seeds, wheat, beef, chicken breast and dark meat, cow’s milk, eggs, herring, perch, salmon, sardines, tuna, goat milk, lamb, pork, soy milk, turkey, veal, yogurt, beef, black eye peas, lima beans, soy beans, and split peas.
Vitamin B6:
Plays a role in creation of antibodies in the immune system, helps maintain normal nerve function, and production of red blood cells. Can be found in things like- avocado, banana, dates, mango, pineapple, pomegranate, watermelon, broccoli, Brussels sprouts, various squash, green pepper, lima beans, okra, peas, sweet potato, chestnuts, hazelnuts, pistachios, brown rice, rye, sunflower seeds, walnuts, wheat, chicken, catfish, cod, salmon, sardines, tuna, pork, soy milk, soy beans, turkey, veal, beef, black eye peas, kidney beans, lima beans, navy beans, pinto beans, and white beans.
Vitamin B9:
Critical part of the spinal fluid, helps produce red blood cells, aids components of the nervous system, helps maintain normal brain function. Can be found in things like- avocado, blackberries, dates, mango, orange, pineapple, pomegranate, raspberries, strawberries, artichoke, asparagus, broccoli, Brussels sprouts, lima beans, okra, peas, spinach, various squash, chestnuts, hazelnuts, oats, peanuts, rye, sunflower seeds, wheat, cheddar cheese, eggs, salmon, lamb, soy beans, soy milk, yogurt, black eye peas, and most legumes.
Vitamin B12:
Important in formation of red blood cells, metabolism, and in maintenance of the nervous system. Can be found in things like- beef, cheddar cheese, cottage cheese, cow’s milk, eggs, catfish, cod, herring, perch, salmon, sardines, tuna, lamb, pork, veal, and yogurt.
Vitamin C:
One of the most important vitamins. It is an antioxidant that protects the body from damage by things like free radicals that can develop cancer. Also an important antiviral agent. Can be found in things like- grapefruit, kiwi, mango, orange, pineapple, strawberries, broccoli, Brussels sprouts, butternut squash, green pepper, chestnuts, cod, perch, goat milk, soy beans, and yogurt.
Vitamin D:
Very vital in bone and tooth health, as well as balancing levels of calcium and phosphorous in the blood. Can be found in things like- mushrooms, beef, cheddar cheese, cream cheese, chicken, cow’s milk, eggs, anchovies, cod, herring, sardines, goat cheese, turkey, yogurt, and pork.
Vitamin E:
Helps the formation of red blood cells and is an antioxidant. Can be found in things like- Avocado, blackberries, blueberries, cranberries, kiwi, mango, nectarine, peach, pomegranate, raspberries, butternut squash, pumpkin, almonds, hazelnuts, sunflower seeds, eggs, herring, sardines, turkey, and pinto beans.
Vitamin K:
Plays a roll in blood clotting and regulates blood calcium levels. Can be found in things like- avocado, blackberries, blueberries, cranberries, grapes, kiwi, mango, pear, plum, pomegranate, raspberries, tomatoes, artichoke, asparagus, broccoli, Brussels sprouts, cabbage, carrots, cauliflower, cucumber, okra, peas, spinach, squash, cashews, chestnuts, hazelnuts, pistachios, rye, beef, cheddar cheese, eggs, lamb, soy milk, turkey, kidney beans, and split peas.
Also be sure to get in plenty of water. I try to limit my soda intake to like 3 a week. Also, juices can be good for you. Just be sure there is no added sugar. Some organic juices are wonderful. Healthy eating!
Love Always
Until Illness is Gone for Good
It seems that I finally got some answers. It only took a 1200 mile drive to the complete opposite side of the country to one of the US’s top hospitals. This is the part where I am going to recommend this place. Cleveland Clinic has been a 98% joy. The only trouble I have experienced is that making appointments once you get here if you need to see other specialists is not always that easy. And most of us don’t have the cash to stay in Cleveland forever to spend 2-3 days between appointments. We were only planning to stay a week but because of my mother’s troubles with appointments, we’ve been deferred to Wednesday now. Other than that, though, the doctors have all been very excellent and thorough. Between my mom and I we have seen four and they have all had wonderful bedside manner. They will explain anything to you, and I tell you they all know their stuff. You won’t get any half-ass treatment here. Not to mention, they have a ton of specialties within specialties- everything from Neurologists who deal mainly with MS (Multiple Sclerosis) to Neurologists that deal specifically with strokes. They have it all. And let’s not forget their centers in general, for instance the Mellen Center is a center devoted entirely to MS. If you are undiagnosed and the doctors in your area just don’t know where to go from there, I would definitely recommend going here. I would just recommend you try to set up a cluster of appointments with all specialists you think you might need ahead of time.
I also would recommend- unless you just have plenty of money to spare- that you stay at the Cleveland Clinic Guesthouse. It’s not exactly four star accommodations like the Intercontinental Hotel but it is plenty decent and you can get a rate of $114-$124 a night depending on if you want a kitchenette or not. The price also drops if you book weekly. This place comes with a free shuttle service all around the clinic buildings that is quick and reliable, and it happens to have two eateries- one linked to it on the inside and one just outside. Not that the clinic itself is in any shortage for decent places to eat.
Now that I prattled like a fan girl about how awesome this place is (because I finally feel like I am going to be getting the relief I have been searching for), I can get on to my diagnosis. I first saw a Neurologist at the Mellen Center because there was some concern over brain MRIs that I had some lesions that could be consistent with the MS pattern. I was also experiencing times where I would wake up with balance and depth perception problems that would last at least a day if not a few. And of course pain- pain everywhere. Then there was the fact that most of the time I stood up I felt faint and sometimes my vision would get a little dark. It also kept me from standing for long periods of time because it made me feel weak. Anyway, after doing an exam on me and taking a long look at my MRIs, he did not feel this was MS. I admit fully I was a little disheartened because last time I was told this it led to a dead end and no treatment. I know some of you will know how I feel- wanting an answer so bad (no matter what it is) just so you can finally get relief. He believed, due to my history, that this was likely rheumatological in nature. He did, however, believe I had extremely out of control migraines and wants to start me on preventative medications. He told me that migraines like this that are untreated and run rampant can cause these small lesions on the brain.
Luckily, I had little trouble getting in to see a Rheumatologist. I saw one on Thursday (I had seen the Neurologist on Tuesday). He gave me a few questionnaires and took an extremely detailed log of all my symptoms down to when they started and how they progressed. He did a physical exam (as is expected in Rheumatology) and took a look at all my past blood work. After compiling all this (one of which was a new objective scoring sheet that has come out for Fibromylagia) he diagnosed me with Fibromyalgia. I’m sure most people with an illness or in the process of being diagnosed know what that is. For those who don’t, this is essentially what it is. They don’t yet know why (though there is several theorized reasons like trauma or a virus) but your neurotransmitters in your brain that pick up pain and the likes get extremely overactive. They start magnifying everything they take in. So if a normal healthy person has a headache that’s a two on the pain scale, if I had it my brain would be telling me it was a ten. It also causes a large amount of fatigue, probably for the same reason. I know a lot of healthy people who have never had to be sick for a long period of time think of Fibromyalgia almost like a fake illness and that it’s not that big of a deal. Well it’s really easy to say when you aren’t living with it. It is absolutely a big deal and if it is untreated it becomes extremely debilitating. I was also happy to learn this explains my issues retaining material and memorizing and the like with my classes. Essentially your brain is so completely overwhelmed with stimuli that it takes much longer to process other information. I had been, ironically, told I might have this several years ago but they gave me the completely wrong treatment. They gave me stimulants and pain medicine- neither of which work in this case. So I always assumed I didn’t have it.
I am also actually going for a sleep study, because both the Rheumatologist and the Neurologist believe that it is quite possible I have a sleep disorder in which I am not getting enough deep sleep. For those who don’t know, deep sleep is very, very, very important for your body. It is even very important mentally. They think this because I don’t wake up feeling rested. I know some of you may think that in fatigue that is just how it is. But apparently it isn’t. Even if you have fatigue, when you initially wake up you should feel rested even if it only lasts for an hour or two. I was never told this and a sleep study had never been suggested to me.
This all left my neurological symptoms unaccounted for, though in some cases the imbalance and such can be caused by Fibromyalgia. It doesn’t really cover the episodes of nearly or completely fainting. I had been told before that my blood pressure dropped on standing (the opposite of what it does in normal people). It drops about 20 points from what I’ve seen, so I can see why it would make me suddenly feel faint. For whatever reason, my body does not adapt quickly enough or at all to standing and working against gravity. For this he wants me to have a tilt table test done to see the exact mechanism that is going on. Unfortunately I will have to do it at home likely, much to my dismay, because the Syncopy Center here is booked until March. I may get to nab a cancellation though.
Now the treatment for all this is essentially medicine and a few other things. For Fibromyalgia there are three medicines specifically FDA approved to treat it and there are some that are not cited to specifically treat it but work. I imagine this will take some playing around as the success of the drugs seems to be very much based on the individual. One of the three doesn’t seem to have more success than the other. I will thankfully not be chronically on any painkillers, because this kind of pain is very different than normal pain in how it is caused, so the conventional treatment doesn’t work. It should also help the fatigue. To accompany the medicine I will need to get in some light aerobic exercise, as too heavy exercise can irritate the situation. This will have to be something in a therapy pool because of the issue I have with my knee (I need a surgery for it). I will also be looking at getting an appropriate sleep schedule and a balanced diet. If I have a sleep issue I am looking at taking a nonconventional sleep aid at night. I say nonconventional because your normal things like Ambien or Lunesta do not work for this. They do great for getting you to go to sleep but not for entering deep sleep. I’ll likely be dealing with things like mild sedatives or muscle relaxants for that. If I have a blood pressure issue, there’s medicine they have for that.
Lastly, for overall care I will be returning to therapy. I have always gotten very defensive when this was mentioned to me because I have had doctors try to put all my health issues off on depression. But the Neurologist here in Cleveland approached it in such a way that I was very open to it. He is saying it’s not even that depression is causing my issues. It’s probably not helping, but my issues caused the depression. Especially for someone my age, it is extremely difficult to have to deal with this many health issues. When I should have been going to dances or out with friends and dating, I was stuck at home missing all of high school and hoping college would be better. And then I was still having a problem, basically forcefully pushing myself through it out of necessity. For seven years I have had to deal with the judgment of people (some of them family) about how I am handling it and exactly how sick I really am. It is a lot to take on, and I can tell you I would give anything to feel normal again. He explained to me that anyone in a chronic illness situation needs a therapist to help make coping with it easier. I guess I finally get it now. It is why I provided the handy link at the top from the APA for a psychologist finder. Even if you aren’t very comfortable with therapy or you don’t think it’s important, I encourage you to do it. This also goes for family members caring for you, because it can be equally as hard. I am not comfortable with it either, but I know it’s for the best- and there’s a good chance it could do some real good helping me. Lords knows there are days I get really sad and don’t handle things with the strength and grace people are accustomed to associating me with.
I hope this is the end to my journey of a seven-year medical mystery. I know it is not the end of dealing with it, but hopefully my quality of life can be greatly improved. If you are still searching, I hope you find your answers soon. I know what it’s like.
Love Always
Until Illness is Gone for Good
In short, I have been living with health problems since I was 15. I have gone undiagnosed for almost 7 years now. I guess you could say that Louisiana’s doctors are less than knowledgable. I have been given bandaid fixes for some symptoms but no true long term care or diagnosis. As I type this, I am at a room in Cleveland Clinic waiting to see a doctor. At some later date I will write a post about my trip through a slew of doctors up until now. For now I’d like to expand on the fact that I created this to help others. Dealing with things like this for so many years does have an effect on you. Everyone who is dealing with any chronic illness really should seek some kind of therapy to help cope. But to me, it also helps to talk to other people who are dealing with the daily battle of trying to be normal. It is a hard life and it shouldn’t be something you feel like you have to do alone. Certainly a lot of us have friends and family but how much do they really understand? It is nice to talk to people who understand that every day is a struggle to attempt to have normalcy in your life. This place is also a haven for loved ones of those people that are ill. It can be just as hard not understanding and not knowing what you can do to help. It may also help open your eyes if you are less than sympathetic to the trials your loved one has to endure every day. Living with a chronic illness and around people that have one is not easy. I hope that with this blog and forums that I will open up a haven for people to help each other.
The Chronic Life 