Thursday, July 13, 2017

Throw Back Thursday-10 Tips to Beat the Heat When Chronically Ill

This was originally posted late last June. I thought it was worth sharing once again. Summer is here, and it's hot! I mean really hot! Many of us with chronic illnesses have a sensitivity to heat. I've never particularly like hot weather, and I can't believe that there are people who do; but, since I became chronically ill, I really cannot tolerate extreme heat. I feel weak, dizzy and faint. Although I have never fainted from the heat, I've come close. So, for those of us who have issues with the extreme summer weather, I thought I'd put together a list of things that have helped me beat the heat.

1. Drink, drink, drink! I'm one of those people who rarely get thirsty. So, I have to make a conscious effort to consume liquids. While there's nothing like an ice-cold glass of water to cool you off,  I also drink sports drinks like Powerade and Gatorade; I think they help some of my autonomic nervous system symptoms. I've also been known to drink a Diet Coke or two a day. I know, they aren't good for me, but they quench my thirst and, at times, nothing else quite hits the spot.


2. Plan outside activities and errands for early in the morning or late in the day if possible. It's hard to believe that getting out of an air-conditioned car and going into an air-conditioned building can cause someone to overheat, but those of us with a chronic illness, know that it can, and it does.

3. Pace yourself. In extreme heat, you really do have an excuse to let a few things go undone. If you have a reason to go out in the heat, plan on doing the bare minimum, no matter what the time of time. I'm not sure how it works, but even when I'm at home in the AC, I find the heat zaps all of my energy. I have to be careful how much I try to do in one day.

4. Stay out of the Kitchen! Or, at least don't turn the oven on. Crockpots are perfect for hot weather as are cold sandwiches. If you need one, extreme heat is a great excuse to get carry-out or go out to dinner.

5. Dress appropriately. Lightweight, loose-fitting, light-colored clothing is best. Here's some useful information on choosing a summer wardrobe. .A guide to breathable summer fabrics. At times, it's best to dress in layers. A lightweight sweater or jacket might be necessary for a building that is overly air conditioned.


6. Use tools designed to help you beat the heat. Cooling towels and pillows, spray bottles/misters, and personal fans are all helpful and not very expensive. If you aren't familiar with cooling towels, they are towels made of a special material that keeps cool. You get them wet, wring them out and place them around your neck. Some people find that help a lot, others not so much. I'm one of the ones who find them very helpful.

7. Eat light, smaller meals that are easy to digest. Also, allow yourself some frozen treats. Popsicles made from 100% juice, smoothies made from fresh fruit and low-fat ice cream are all good at cooling your body down.

8. Cool your house . Close curtains and blinds in the heat of the day, turn off heat producing appliances and have your central air conditioning system checked in the spring. Our system is aging, and the past few years we've needed coolant added. Besides the addition of coolant, the serviceman also cleans and checks to see that the AC is working efficiently. The spring check-up costs a small bit of money up front but making sure the system is operating properly can save money in cooling costs and possibly prevent a major problem from occurring in the heat of the summer.

9. Water is your friend. Besides drinking water, swimming, taking cool showers and playing in the water are all good ways to cool you down. Take
 advantage of whatever is available to you, even if that's only a super soaker squirt gun.

10. Remember cooler weather is right around the corner. The heat of summer seems as though it lasts forever, but it doesn't. In just a few short months, we'll all be starting to complain about how cold it is. Then, I can write a 10 Tips to Beat the Cold. Seriously, though, the seasons come and go so quickly, so it's best to find something to enjoy about each one.

"Summer is a promissory note signed in June, its long days spent and gone before you know it, and due to be repaid next January." ~Hal Borland





Wednesday, July 5, 2017

Rambling Update Ahead

I've had blogging on my to-do list for the last few months. It's been pushed to the next day, then the next, etc. Well, here I am, finally.

 I just finished up six weeks of physical therapy. I'm pretty proud of myself for making it through the whole six weeks. I was released with an exercise plan that seems doable. One of the things that I did at PT was to ride an exercise bike. I only did ten minutes each visit, but it was a start. So, I've been keeping my eye out for a used recumbent exercise bike. Well, I found one this week. It's a Schwinn and I got it for $100! Yay me! It's in very good condition and it has a lot of bells and whistles on it, many, I'm sure I won't use. I'm going to start with ten minutes every other day, then work my way up gradually to where I'm riding a half an hour a day. That might not be possible for me, but I want to have a goal in mind. I'm sure there'll be days that I can't ride, so I need to let myself off the hook for those days.

I'm continuing to be much better off mentally than I was during the winter. The sunshine and warm air have been good for me. I know the hot weather is on its way though, and that tends to be one of the worst times for me physically. Honestly, I don't do well with the extreme weather, hot or cold. I've had a week or so of increasing weakness and pain, along with more severe blood pooling. I'm at a loss as to who I should see for this. I wish I could have one, or even two, doctors who could take care of all of my needs and do it well. I know, that's asking too much, though.

After a year of waiting, I finally, have a referral to a Rheumatologist. The last time I talked to my primary care doctor's office about it, they wanted a letter from my eye doctor recommending the referral. I know my eye doctor will probably do that for me, but why should she have to? I have one autoimmune disease, have had high autoimmune markers in my blood, have severe dry eyes, dry nose and now I'm developing a dry mouth! I shouldn't have to make a phone call or wait until my next visit to speak to my eye doctor about it. Well, a few weeks ago I had an appointment with my Endocrinologist; on a previous visit, she had offered to make the referral if I couldn't get my primary care doctor to do it. I wasn't going to bring it up, but she did. I was telling her about my increased symptoms and she just felt like it needed to be done, so after all of this time, the referral has been made. I cannot tell you how relieved I am. My appointment isn't until October, but I'm on a cancellation list, so, hopefully, it will be sooner.

So, you'd think I'd be so happy about the referral, that I'd have no reason to be worried, well, you'd be wrong. You should know me better. I'm second guessing myself; maybe there is no reason for me to see a Rheumatologist? Since I fought so hard for the referral, I feel as if something has to be found. I suppose I'm concerned about what my Endo will think if all the testing turns out to be normal. Then there's the whole thing about how I'll be treated by the Rheumatologist. Will he believe me? Will he order tests? If he does and nothing is found, will he continue to follow me in case something does develop? Ugh! A doctor's appointment shouldn't cause this much stress. I've read about others in the chronic illness community who, like me, feel as if they have a form of post-traumatic stress disorder from the medical profession. There are many stories out there of belittling, accusing, ignoring and dismissing those of us who are so desperately looking for help.

Since I started this post, I've seen my eye doctor. Because I'm still having issues with dry eyes, she's decided I should try Restasis. I'm sure you've seen the commercials on TV for Restasis. It is an eye medication for extremely dry eyes. It's expensive, so it's usually not the first choice for treating dry eye disease. At one time, my primary care doctor had prescribed it for me, but it was going to cost me $500 a month! The eye doctor gave me a card I could use which brings the price down to $30 a month! That, I can handle. It can take up to three months to work, so I'll still have to use my dry eye drops for several months. I'm hopeful that this will help make a difference in my eyes.

That's all I have for now. I'm trying to decide if I'm going to continue blogging or not. I seem to have a very bad case of writer's block. Maybe I should see a doctor for that? HA! If any of my fellow bloggers have any ideas on how I can get through this, please send me a message. Thanks a bunch!









Monday, March 27, 2017

Monday Musings

Last week I mentioned having back pain. Well, as luck would have it, I had an already scheduled check-up with my primary care doctor, so I was able to discuss it with him then. After his poking, prodding, and questioning, he diagnosed me with Sacroiliitis. I didn't tell him that, with the help of "Dr. Google", I'd already diagnosed myself. Here's some information on Sacroiliitis. I was prescribed anti-inflammatories, muscle relaxers, and physical therapy. The doctor feels my Sacroiliitis is most likely caused by arthritis. This doesn't surprise me one bit; having EDS puts me at risk for osteoarthritis. Of course, my reading also told me that sometimes Sacroiliitis can be a part of an autoimmune disease, which I'm at risk of developing another as I already have one. Regardless of the cause, I'm happy to know what is wrong and how to treat it.



Yesterday I went to church; I went by myself as Tim had to go to work for a bit. Because I was having so much trouble walking, I used my cane, and I had several people comment on it. Everyone was nice about it, but it got me to thinking about how I deal with using mobility devices. How I really feel about them. Most of the time, if I'm with Tim, I don't use my cane, I just hang on to him. Now if I'm really having difficulty walking, I'll use a wheelchair, but that's very rare. If I'm that bad, I'm usually too sick to go out. I know I worry about what people think and I know one reason for that. It took me years to get diagnosed, and during that time, it was the medical community that treated me the worst. It really made me doubt myself. I was disbelieved, belittled and ignored.To this day, more than five years after my first diagnosis, I still, at times, doubt myself. Am I really that sick? By using a cane am I just trying to draw attention to myself, or do I really need it? Then there's the fact that my symptoms can be so variable. For example, yesterday afternoon, I was able to go for a walk with Tim. It crossed my mind what people who'd seen me that morning might think if they saw me walking around rather easily later in the day. Of course, they don't know that my pain and mobility are generally worse in the morning, nor do they know that I took a rather long nap before we went for a walk. In this particular instance, I hadn't taken any muscle relaxers or pain meds, but many times, that makes a difference as to what I am able or not able to do. Since the rise of social media, it's pretty common to see the memes floating around regarding what wheelchair users should and shouldn't be able to do. Perhaps you've seen the meme of the woman who is standing up out of her wheelchair to get an item off the top shelf at the grocery store. The thought is that she must not really need the wheelchair if she can stand. Of course, that's not necessarily the case. It's as if people think you must be paralyzed if you use a chair. But, the fact is, many chair users can walk. Some of them can walk some days and not others. Some can walk long distances, some not. Many, have to have someone push them in the chair as they aren't able to to that themselves. There're so many scenarios out there that the average, able-bodied person hasn't thought of. It's obvious this whole topic is one that I feel strongly about. I believe it deserves its own blog post. Look for it in the future.



I suppose it's a bit late, but I wanted to mention that March is National Autoimmune Disease Awareness Month. According to the American Autoimmune Related Disease Association (AARDA), approximately 50 million Americans, one in five people, suffer from autoimmune diseases, 75% of them are women. There are over 100 known autoimmune diseases. For more information, visit AARDA.

How do you feel about using mobility aids? Are you self-conscious? If so, has anything happened to make you feel that way? Please feel free to share. I love receiving input on these kinds of topics.
As always, thanks for reading.
  




Monday, March 20, 2017

Monday Musings

Well, here I am again with not a whole lot to say about any one thing, and a little bit about a lot of things. Here goes nothing...

After a brief cold snap, the Springlike weather has returned, and even though we really didn't have much of a Winter here at all, it's still nice that Spring is officially here. I'm hoping that it will
bring more sunshine and less rain. Even though we didn't get much snow or cold, we had a lot of cloudy, rainy days over the past few months. I've come to realize that a lack of sunlight really does affect my moods. I guess I need to pay closer attention to my theory to see if it holds together.

I spent a few days last week nursing an injured back. I'm not sure what I did, but I suspect I either pulled a muscle or did something to cause one of my herniated discs to flare up. Regardless of the cause, I took muscle relaxers and a few pain pills to get me through the worst. I had to use my cane for several days, too. I was a mess! I will say it got me to thinking about a few things. For one, I really, really need to be aware of my limitations. I was vacuuming, leaning over too far when the injury happened. I know better than that. Also, I have got to get over the whole "being embarrassed while using a cane thing." The funny thing is, I'm more embarrassed to use it when I'm with my husband than when I'm by myself. I'm not sure why. It's not as if he has ever shamed me for using one. Excuse me while I go analyze myself.

I had an eye appointment a few weeks ago. This was for an OCT and Visual Field test. As usual, it lasted well over two hours. I love my eye doc, but I do not like the waiting. Anyway, after the tests were done, the doctor went over them with me. She was concerned about the results of one of them, so she wanted to repeat it. She said it could just be an error or something like that, but the repeat test results were the same. I'd already told her I was going to leave after the test, but I'd really thought it was going to be normal. I haven't heard back from her, she could be waiting for my next appointment to go over the results with me, I'm not sure. I suppose I should call her office, but I'm almost afraid to.

I still haven't received a referral to a Rheumatologist, and I've given up, at least for now. I still have severe dry eyes, increasing spells of dry mouth, dry skin and, rarely, a very dry nose. All of that along with my severe muscle pain. Yes, the muscle pain could be from my Ehler's Danlos Syndrome, or perhaps my thyroid, but with elevated autoimmune levels in the past, it has me concerned. For now, I'll at least make sure my primary care doctor does routine autoimmune blood work. To be honest, I just can't deal with finding out that I have yet another illness. Maybe it's denial, maybe not. Between my eye appointment ordeal and the thought that I may have another autoimmune disease, well it's just too much to think about now. Am I the only one who gets this way? It's hard enough to deal with the illnesses I do have without having to start with another one. That would mean more doctor's appointments, more tests, and possibly more medication. No thank you!

I suppose that's enough of my rambling er musing. I hope everyone out there is doing well. Leave me a comment and let me know what you're thinking. I do love hearing from my readers. A private message is always welcome, too. Until next time, here's a bit of sunshine to enjoy...

Nature's Medicine











Tuesday, February 14, 2017

Dealing with a Depression Flare-Up

This winter has been tough for me as far as my depression goes. It's been so cloudy and dreary, and I do think the lack of sun has affected me. I've had to keep fighting to keep myself from sinking too low. I know I've shared my battle with depression in the past, so I want to continue to do that. 

I suppose I'm one of the unlucky ones who has several chronic illnesses along with mental health problems. I have both depression and anxiety. My anxiety is under control with medication; however, my depression, while being treated, is not. Since I've been on medication, my depression is much better than it was when it was untreated. In fact, I can go a very long time and not feel depressed at all. But, I have flare ups of depression, and that is hard to handle. I'm learning what it is I need to help myself on those bad days. Here are a few things that have helped me:

1. Communicating with others- A tendency to isolate oneself is part of depression, so it's a struggle to reach out to others when I'm feeling down. There are certain people I do not call when I'm feeling low. I think we all have or have had friends or family members who are draining. A phone call with a request for help can sometimes turn into an hour-long monolog by said friend. For obvious reasons, this is not helpful. I try to call or text others when I'm doing well as to not "be that person." You know, the one who only calls when they're in crises. Find your person.The one who understands you and will be there for you when you need them. Of course, it goes without saying that you need to be there for them, too.


Spending Time Outdoors

2. Getting out of the house- Being out in the fresh air, and sunshine if you're lucky enough to have some, is healing. Sometimes, just going out to walk the dog will help me feel a little bit better. I might see a neighbor and chat for a bit, or see a few squirrels, which are my very favorite wild animals. It's fun to watch them chase each other around the yard and up the tree. While going shopping isn't always my favorite thing to do, I have found that I sometimes feel better being out and around others. 

3. Reading a good book- I've always loved to read. When I'm depressed, I find it hard to focus, though, so I try to keep my reading rather light at those times. There's something to be said about escaping into a light-hearted fiction book. Along with my book, I might enjoy having a bit of candy or a cookie. I try to eat dark chocolate most of the time. Obviously, the sweets aren't an everyday occurrence, but something that I allow myself to have more often than I should occasionally.

Doing a Little Bit of Baking
4.Having something to work on- I'm not talking about a huge project like painting a room, but something small and more manageable to help me to "get out of my head." If I'm too sick to get out of bed, I might pass the time planning our next family get-together, my future remodeling projects or next years' vacation. If I'm able to be up and about, I may work on organizing family photos or paperwork or spend some time baking. 

5. Surrounding myself with water- A long shower or a soak in the tub are always relaxing to me. In the summer, I'll spend time in our pool. The sound of water has always soothed me, so listening to my sound app that has a variety of water sounds is healing. We are fortunate enough to live in a city on the river, walking along the walkway by the river is an enjoyable way to get exercise while viewing and hearing the water. 

6. Listening to music-There's something so therapeutic about music. I've always been a music lover; as a child, I remember spending most of my allowance on 45's (I'm giving my age away, aren't I?) I enjoy a variety of music, jazz, oldies, country, rock, contemporary Christian, etc. I'm really not too picky. All I know is that immersing myself in the sound of music does more to lift my mood than almost anything else.  


Reading Encouraging Scripture

7. Connecting with God- Prayer, reading scripture, listening to church service, all help me. I'm not the most religious person, but I am a believer, and I do feel there's a place for religion or some kind of spiritual connection when dealing with a chronic illness. For me, having faith and hope, help make the bad days not so bad. 


8.Keeping things in perspective- It's so easy to let yourself ruminate about things, but that isn't very conducive to good mental health. I find that if I'm able to tell myself that I've felt this way before and I made it through to the other side, those "what if" and "why me" thoughts are lessened. Looking through the foggy lenses of a depressed person is difficult, that's why having the ability to remember the ups and downs of life is so helpful. 

These coping strategies may or may not be helpful to you, but it certainly won't hurt to try some of them. It goes without saying that if you are clinically depressed or suicidal, you need to see a professional. Here's to having better days ahead for all of us!




Thursday, February 2, 2017

What I'd Like the Church to Know About Chronic Illness

Last Sunday, my husband and I went to church. We don't attend as often as I'd like, but when we do go, I always feel a little self-conscious. I have several invisible illnesses, which means you can't always tell when I'm not doing well. I started thinking that, perhaps, I can help others to see that they're not alone and maybe I can explain what someone with chronic illness might experience so church and staff members can understand a bit more.

We are those people. We sit in the same place nearly every time we attend church. Our seats are pretty close to an exit; no this isn't so we can make a quick escape.There are times when I have a coughing spell, GI issues or just need to walk around, so I find it easier if we sit near an exit. So, please don't think I'm anal when I make a beeline for "our seats," their locations have been well thought out.

Our church has a great music ministry. We probably sing for about ten to fifteen minutes every
 Sunday (no, I've never actually timed it.) In my past life, BS (before sickness), I really enjoyed this. I still enjoy listening, but I'm not able to participate. I can't stand in one place for more than five minutes, some days even that is too much. If I do, blood starts pooling in my feet and legs, that causes pain, numbness and also causes me to become weak and feel faint due to the blood leaving my brain. So, I usually stand for a few minutes, then I sit. I don't normally take my cane or any other mobility device to church, so most people don't realize I'm chronically ill. I'm sure a few people have wondered why I don't participate as I look relatively youngish and healthy. Besides not being able to stand, I'm unable to sing for very long (family members might say I'm unable to sing period.) I must really look rude! I can't sing because I don't have the energy or breath to do so. We haven't quite figured out what the cause of that is, but it's perhaps a symptom of dysautonomia. So, please understand why I don't participate in this part of worship. It's not because I don't want to, it's because I'm unable to.

I don't always close my eyes and bow my head to pray. Some days I'm prone to spells of vertigo, these can be set off by a change of position in my head (usually looking down) and/or by me closing my eyes. So, I usually close my eyes ever so slightly but don't bow my head during prayer. I know there are probably many people who aren't ill who don't bow their head, but most do in church and, in the past, I always did. So, please don't think I'm rude when I don't appear to pray, nothing could be further from the truth, I can pray in many ways.

I'm not always real social before or after church. In fact, I may come across as being rude. It sometimes takes me a great deal of effort to get ready for church, I may not have slept well the night before, and I may be in a lot of pain. Any number of things can cause me to retreat into myself. I'm normally a pretty social person, but when I'm having a bad day, I tend to steer clear of people. I may not get up and shake hands during greeting time during the service, I may take another exit out of the church to avoid the crowd, and I may spend more time than needed in the restroom waiting for the lobby to clear. So, please understand, it's not you, it's me. It's my way of coping with all of my many symptoms in the way I know best.

My church attendance may be sporadic. This includes both church services and other church-related groups or activities. You may see me out somewhere on a Saturday night, but come Sunday morning, I'm too sick to go to church. My symptoms can change that fast. I am so grateful that we have an option to watch services live online every Sunday. No, it's not the same as being there; but, it does help me to feel as if I'm still a part of my church. I've joined a study group that meets on Friday mornings; I've missed several times because of not feeling well. I feel bad about my poor attendance because I worry that other members of the group will think I'm not taking it seriously enough and that I may be taking the spot of someone who could attend more regularly. So, please know that I do want to be there and that I need to be a part of a group.


The other day, I got a very nice card in the mail from my church women's group. The card really did cheer me up on what was a very difficult day. So often, those of us with chronic illnesses, feel left out. There are meals trains, greeting card and visitation ministries for those who have been hospitalized, had surgery, or had a baby, but those of us in this category of always-being-ill, aren't always remembered. Of course, that's not always the case, but from my reading and conversations with others who are chronically ill, it happens more than it probably should. So, please remember those of us with chronic illnesses, a card, a phone call and/or a meal would be so appreciated.

I hope I have helped some of you to feel understood and gave others of you some understanding. The support and understanding of the church is so important to believers who have a chronic illness. For many of us, it's the one place where heartache meets hope and where those who worship with us can really make a difference in our lives.

Wednesday, January 11, 2017

A Look Back and A Look Forward

The holidays have come and gone, with that comes
 reminiscing about the past, and planning for the
future. 2016 brought us a lot of happiness:  our son moved back to town after being half a country away at grad school for three years, our youngest daughter and her husband bought a home five minutes from us, and our first grandchild was born! Oh, our oldest daughter has been dating a very nice young man who seems to make her very happy. Sadly, we lost my husband's sister to the cancer that she'd fought for so long. Tim, was down (or as down as he could be) with pneumonia the last few months of the year. And, while, he wasn't hospitalized, he was pretty sick. Thankfully, he's mostly recovered now. For me, things have been up and down. I'm pretty stable at the moment, but I have periods where I slowly progress. My shoulders have definitely given me more trouble lately, and I spend quite a bit of time putting pain relieving ointment on and taping them. My autonomic nervous system seems to be more messed up than ever. Also, my fatigue is out of this world. I'm always exhausted, and I never seem to get enough sleep. I slept until 10 o'clock this morning, which is unheard of for me.

Medically, I don't know what 2017 will hold for me. I had started occupational therapy at the end of the year but had to give it up when I discovered the place I'd been going isn't covered under our new insurance. I know I need to get in with another therapist, but, right now, I'm in hibernation mode. It's cold, damp and I just want to stay home. We also have new prescription coverage which requires us to go to a particular pharmacy. We had to get 90-day prescriptions filled for all of our maintenance meds, which is, basically, all that my husband and I take. After several phone calls, I finally got all of our doctors to get the 90-day prescriptions sent to the pharmacy. I think I need an assistant! 

Speaking of assistants, I hired our youngest daughter to come clean for us. They could use the money, and I could use the help. She sweeps, dusts, vacuums, and mops (I'm sure I'll find more for her to do). It's such a help; physically, it was just getting to be too much for me. Plus, I had no energy left for anything else. Just because I'm chronically ill doesn't mean I don't deserve to have a beautiful, full-filling life.  It's a great way to start a new year! Now, I'm writing more (The Mighty recently published two of my blog posts that I'd submitted!) and devoting more time to other things I enjoy and/or need to be doing such as reading, baking, cooking, genealogy and organizing. I've joined a Reading the Bible in a Year Facebook group our church is doing and started attending a weekly women's Bible study fellowship group at our church. These are things I probably wouldn't have even tried to do in the past, but with the help of my daughter, I'm able to accomplish so much more. I've also been better about resting, and not feeling guilty about it, when I need it, knowing the housework is going to get done. I know not everyone can afford to hire help, but if you find yourself in my position, overwhelmed by chores that have to be done, don't hesitate to ask for help from family, friends or your church family, if you have one.

I have decided to follow through on getting in to see an autonomic nervous system specialist. From what I've read, this could take a year or two to accomplish.  Since I've had a progression in the dysautonomia this past year, I don't know where I'll be with it in a year or two, but I'm concerned. I have a good idea about who I want to see, but I'll need to do a bit of research to make sure he's definitely the right one for me. I also need to get serious about eating better, taking my vitamins and finding some kind of exercise I can tolerate.

What kind of changes are you planning on making in the new year? Don't forget to take the time to nurture your mind and spirit. It's so important for everyone, but even more important for those of us with a chronic illness. When you're making those resolutions and plans for the new year, make yourself a priority. Remember and repeat to yourself often: