Oh my gosh how time gets away from me! I'm sorry to have just up and left you here without an update or anything! So much has been going on so let's get started with this update!
Since my last update I've had a couple more Dr appointments and continue to have a lower dose of Synthroid. I'm now on 112 mg/day. Honestly, I can't tell any difference from 150 mg to now but apparently my TSH is still not in the right range.
In other news, I decided around the holidays to go back to school this year. I started on Jan 5th and am almost done with my first class. I'm doing an online program to get my Bachelors degree in Social and Criminal Justice. I've always been interested in this field so I figured why not! It seemed like a good time to get started with most all of my health issues "under control" at this point, or should I say for now.
My FMS has been relatively "laying low" if you will. Now I say this only because I can compare what I previously had to deal with to now. Don't get me wrong, I still have my good days and bad days, but they are nothing compared to what I use to deal with. I still have a pretty high level of fatigue which I don't think I'll ever not have to deal with. Aches and pains, they come and go but are at a level that is manageable on a day to day basis. My hips tend to give me the most trouble with consistent pain and my guts are often "upset". I'm sure a lot of this sounds all too familiar to many who deal with the curse of chronic illness(es).
The most recent flare I've had to deal with is the tendon in my right arm flared up. Literally I was fine the night before and woke up with this pain that was pretty intense going from my hand to my elbow and especially worse with certain movements. This was terrible as I'm right handed and couldn't do anything that required lifting or twisting. Even lifting just a bottle of Gatorade was impossible for weeks. I had my chiropractor treat me using a technique called "Graston" - if you have never heard of it, click HERE to read about it. It's a strange kind of therapy but it works every time! I've had it done several times for different issues and each time it's solved the problem. With my arm, I had 2 sessions and the pain was noticeably less. Today, I have no pain in that area.
Speaking about chiropractors, I need to mention that at the end of the year I realized I had not been into my primary physician's office in an entire year! That was something to celebrate as it's just unheard of with all the health issues I've had to deal with. Other than my Endocrinologist dealing with my thyroid, I didn't need to see an MD for any kind of illness for an entire year .... and still going! I did however, see my chiropractor anywhere from 2x a week to 1x a month just depending on my needs and what was going on. I firmly believe in and highly recommend alternative treatments for people like us with chronic conditions. From the research I've done, alternative therapy is the way to go for managing these chronic illnesses that aren't necessarily seen as true illness. Those of us who deal with them day in and day out know otherwise.
When asked what I've done to "make yourself better" I can't really pinpoint just one thing. It's been a long road of recovery to get to the point I'm at today. Feeling good with occasional flares. listening to my body, taking time to do nothing when I need to, the right mixture of nutrients, protein, and therapy all play a role in healing the body and getting you to a good functioning state of being. I spent a lot of time researching and trying different methods until I started seeing good results. It's a hard long road but at the end of it the results are better health and an overall better quality of life. I know that at any moment I could crumple to the floor in pain and deal with that for an undetermined amount of time, but for the time being I will enjoy where I am with my health.
Like many people who deal with chronic illness, I belong to several online support groups. It gets hard to read everyone's postings about how terrible they are doing. In more cases than not, it's usually money that stops people from getting the help and treatment they need to feel better and be a contributing member of their community. So the cycle just continues, day in and day out so many people are suffering. My hope is still what it was when I first started this blog, that if I can help even just one person find a path to getting themselves to a better state of health, then I've succeeded in my mission.
I hope the New Year has found you well and that you are finding ways to manage in your day to day life. Whether you suffer from chronic illness or a loved one does, I encourage you to look back through my postings and try new things in an effort to feel better.
My vow to you today is that I will try to do better with my updates - I just get so busy in life that I forget to come post updates. I will make a conscious effort to update at least 1x a month if not more!
Until next time....to your health!
Showing posts with label Chronic Illness. Show all posts
Showing posts with label Chronic Illness. Show all posts
Thursday, January 21, 2016
Wednesday, July 8, 2015
Thyroid Surgery, Synthroid, Recovery and more......
Hello! I'm here, alive and doing pretty well! Had my surgery on June 26th which I want to share that experience with everyone......
Surgery took about 3 hrs - apparently my thyroid growths were pretty big, bigger than the Dr expected and growing down into my chest! That was a surprise when he told us that! Clearly a good thing I went with the surgery to get it removed. Pain after surgery was pretty high mostly inside my throat and upper chest - it hurt pretty bad - the incision itself didn't really bother me though. It was swallowing and taking a deep breathe that I struggled with. The Dr had told me to expect some pain in my throat due to the large breathing tube they use in order to monitor the nerves to the vocal cord. So the pain wasn't a surprise really but the amount of time I've had it has been. I'm almost 2 wks out from surgery and my throat still hurts to a degree. Not nearly as bad as it did but it still hurts when I swallow. Hoping that goes away in the next week. I have my follow up on Thursday the 9th (tomorrow).
The day after surgery I started on Synthroid, the hormone to replace the thyroid function which I'll be on for life. So far I suppose it's working, I don't feel any ill effects or any good effects for that matter....I feel fine really. I'm hoping I don't have any issues with the dosage - they started me on 150mg which I was told was the normal starting dose based on weight. I suppose if I lose weight, which is my intention, they may have to adjust the dosage.
So all in all, not a lot to report with surgery, recovery has been good, I've just been taking it easy and resting a lot and as I feel I need to.
I'm hoping my energy levels improve but so far I haven't noticed much of a difference. As I continue to recover and go on in life without my thyroid I'm hoping that things change in the area of my energy and that I get more of it.......I've lived so long with this chronic fatigue and low energy/metabolism I am really looking forward to possibly having better energy and a faster metabolism but we'll see. While in the hospital I also found out that I still have low Vitamin D levels, so I'm going to start taking that supplement again to improve in that area which could also help with the energy.
To be honest, I'm so very tired of having all these "issues". At times I wonder if I really have all the things the Dr's have told me I have - Fibromyalgia, Chronic Fatigue, Lupus......All the symptoms for each really go hand in hand and cross over one another that I find it hard to believe sometimes......are my diagnosis really that or just because the Dr's couldn't figure out why I have the issues I have had. I know I have Lupus as the blood test came back positive for that and I have the tell-tell signs of it.
Now, in addition to continuing to heal, I'm on a mission to lose this weight I've put on. I've started back on the Body By Vi program, you can check it out here - Body by Visalus - It's really helpful with controlling hunger and providing the nutrients our bodies need to keep us healthy and strong. I like it because I can drink a shake for breakfast which I usually skip anyway. It's a great program if you want to start a challenge, please check it out and let me know - you can win money and with every 10lbs you lose you also help a child in need. The program is fantastic and you get tons of support! Since starting on the challenge 23 days ago I've already lost 9lbs!!
Everyday is still a challenge and I'm not sure what to expect. One day I'm great and the next I'm feeling sick. Yesterday was a day full of nausea and just not feeling well. I've also developed some issues in my gut causing me to stay close to the bathroom most of the time.
That's about all I can give you for an update - I'll post again soon as I continue to heal and become the better version of myself.
Until then....To your health!
Gerri
Surgery took about 3 hrs - apparently my thyroid growths were pretty big, bigger than the Dr expected and growing down into my chest! That was a surprise when he told us that! Clearly a good thing I went with the surgery to get it removed. Pain after surgery was pretty high mostly inside my throat and upper chest - it hurt pretty bad - the incision itself didn't really bother me though. It was swallowing and taking a deep breathe that I struggled with. The Dr had told me to expect some pain in my throat due to the large breathing tube they use in order to monitor the nerves to the vocal cord. So the pain wasn't a surprise really but the amount of time I've had it has been. I'm almost 2 wks out from surgery and my throat still hurts to a degree. Not nearly as bad as it did but it still hurts when I swallow. Hoping that goes away in the next week. I have my follow up on Thursday the 9th (tomorrow).
The day after surgery I started on Synthroid, the hormone to replace the thyroid function which I'll be on for life. So far I suppose it's working, I don't feel any ill effects or any good effects for that matter....I feel fine really. I'm hoping I don't have any issues with the dosage - they started me on 150mg which I was told was the normal starting dose based on weight. I suppose if I lose weight, which is my intention, they may have to adjust the dosage.
So all in all, not a lot to report with surgery, recovery has been good, I've just been taking it easy and resting a lot and as I feel I need to.
I'm hoping my energy levels improve but so far I haven't noticed much of a difference. As I continue to recover and go on in life without my thyroid I'm hoping that things change in the area of my energy and that I get more of it.......I've lived so long with this chronic fatigue and low energy/metabolism I am really looking forward to possibly having better energy and a faster metabolism but we'll see. While in the hospital I also found out that I still have low Vitamin D levels, so I'm going to start taking that supplement again to improve in that area which could also help with the energy.
To be honest, I'm so very tired of having all these "issues". At times I wonder if I really have all the things the Dr's have told me I have - Fibromyalgia, Chronic Fatigue, Lupus......All the symptoms for each really go hand in hand and cross over one another that I find it hard to believe sometimes......are my diagnosis really that or just because the Dr's couldn't figure out why I have the issues I have had. I know I have Lupus as the blood test came back positive for that and I have the tell-tell signs of it.
Now, in addition to continuing to heal, I'm on a mission to lose this weight I've put on. I've started back on the Body By Vi program, you can check it out here - Body by Visalus - It's really helpful with controlling hunger and providing the nutrients our bodies need to keep us healthy and strong. I like it because I can drink a shake for breakfast which I usually skip anyway. It's a great program if you want to start a challenge, please check it out and let me know - you can win money and with every 10lbs you lose you also help a child in need. The program is fantastic and you get tons of support! Since starting on the challenge 23 days ago I've already lost 9lbs!!
Everyday is still a challenge and I'm not sure what to expect. One day I'm great and the next I'm feeling sick. Yesterday was a day full of nausea and just not feeling well. I've also developed some issues in my gut causing me to stay close to the bathroom most of the time.
That's about all I can give you for an update - I'll post again soon as I continue to heal and become the better version of myself.
Until then....To your health!
Gerri
Wednesday, April 2, 2014
Let's visit this FMS and Herpes connection again shall we?
So if you recall in my last post I included an article I had found that shows a potential link between FMS and HSV. If you need to refresh yourself on that article, you can do so by clicking HERE - then let's dig a little deeper into this connection and see what we find.
Naturally, I've been doing some research of my own and think that this article has a lot to it and that this . I have EBV (Epstein Barr Virus) which is also known as human Herpesvirus 4. EBV is also linked to Chronic Fatigue - hmmmm interesting, I have that too. EBV can also cause infectious mononucleosis - another interesting thing, I was diagnosed with Mono when I was 16 - seeing the dots connect yet? Mono and EBV, the two seem to go hand in hand. Funny thing though, once you have it, you NEVER ever get rid of it. It lurks and can cause havoc on your body at any given time. Sound familiar? Boy it sure does to me!
So we know there is a link between EBV, HSV, CFS and Mono.....where does FMS come into play? I wonder if because of all the other things, FMS and the pain we experience is just another part of the Herpes virus boring away at our nerve ganglia which in turn causes our unexplained pain all over our bodies....something to consider as a real possibility.
See what happens when I have too much time on my hands? I start posting to my blog and researching things which leads me in all kinds of directions!
On a side note, please, please look at this product I've talked about PowerStrips - it works and the results are incredible! I've been enjoying pain free living since finding it and hope to help others who suffer from pain with this simple system.
Until next time - to your health!!!
Gerri
Naturally, I've been doing some research of my own and think that this article has a lot to it and that this . I have EBV (Epstein Barr Virus) which is also known as human Herpesvirus 4. EBV is also linked to Chronic Fatigue - hmmmm interesting, I have that too. EBV can also cause infectious mononucleosis - another interesting thing, I was diagnosed with Mono when I was 16 - seeing the dots connect yet? Mono and EBV, the two seem to go hand in hand. Funny thing though, once you have it, you NEVER ever get rid of it. It lurks and can cause havoc on your body at any given time. Sound familiar? Boy it sure does to me!
So we know there is a link between EBV, HSV, CFS and Mono.....where does FMS come into play? I wonder if because of all the other things, FMS and the pain we experience is just another part of the Herpes virus boring away at our nerve ganglia which in turn causes our unexplained pain all over our bodies....something to consider as a real possibility.
See what happens when I have too much time on my hands? I start posting to my blog and researching things which leads me in all kinds of directions!
On a side note, please, please look at this product I've talked about PowerStrips - it works and the results are incredible! I've been enjoying pain free living since finding it and hope to help others who suffer from pain with this simple system.
Until next time - to your health!!!
Gerri
Tuesday, April 1, 2014
Interesting study on FMS and HSV (Herpes Simplex Virus)
My entire purpose of starting this blog is to keep my own research someplace that I can refer back to and reflect on. Another reason was to hopefully touch the lives of others who may find themselves in a similar situation as I did about 4 yrs ago - sick with no answers! It's not a fun place to be and actually a very desperate place to find yourself.
Over the course of time as I started to feel better and become more active in my own life I slowly stopped posting things to my blog - this was not intentional, just an oversight as life gets busy.
My goal right now is to keep up on this blog, continuing to add beneficial information that I have found online myself or that was sent to me. I hope to be a source of information to those out there who seek it and to keep those who wish to be kept up to date on how I'm doing with my own struggles.
Today I read an article that I found quite interesting. As anyone who suffers from FMS, CFS, and other chronic issues we don't really have any answers but all these studies being done touch on the POSSIBLE - they still have a long way to go to be proven or to even have a remedy that will work. It's a sad place to be, looking in on these things with the hope that someday in our lifetime they will find something to help us - until then, we carry on, trying new things until we find something that works well enough.
You can read the article HERE
Until next time - to your health!
Gerri
Over the course of time as I started to feel better and become more active in my own life I slowly stopped posting things to my blog - this was not intentional, just an oversight as life gets busy.
My goal right now is to keep up on this blog, continuing to add beneficial information that I have found online myself or that was sent to me. I hope to be a source of information to those out there who seek it and to keep those who wish to be kept up to date on how I'm doing with my own struggles.
Today I read an article that I found quite interesting. As anyone who suffers from FMS, CFS, and other chronic issues we don't really have any answers but all these studies being done touch on the POSSIBLE - they still have a long way to go to be proven or to even have a remedy that will work. It's a sad place to be, looking in on these things with the hope that someday in our lifetime they will find something to help us - until then, we carry on, trying new things until we find something that works well enough.
You can read the article HERE
Until next time - to your health!
Gerri
Monday, March 31, 2014
Unbelievable!!! You have GOT TO READ this!
I'm going to get right to the point - I've stumbled on a product that is nothing short of amazing! If you are like me, you have heard this before, been approached by people who claim to have what you need to make you feel better - only to be disappointed when it didn't work - well, from one chronic pain sufferer to another - I am not pulling your chain and I would NEVER vouch for something that didn't work on me!
If you are like me and live with pain all the time day in and day out then you have got to continue reading this and be prepared to share with everyone you love and know that lives with pain.
I for one don't take medication to relieve my pain. I try all natural ways to control it and most of the time am just dealing with the pain as I go through my daily life. I visit my chiropractor about every 2 wks to keep my body in line and working good. I have found that these regular visits help more than anything else.
Long story short, a friend of mine told me about this product that relieves pain. She explained that it's all natural and there is nothing like it anywhere. Like everything else my initial thought is "yeah right" - so she sent me a sample of this product to try. It's basically a patch you put on where you experience pain. You can check it out here!
For me, at the moment, my daily pain is located in my shoulder joint. It's a deep aching pain that just won't give. So I slapped this patch on my shoulder as instructed. She said to let her know how it feels in the morning. So I went about my business for the rest of the night and went to bed wearing this patch. I didn't notice anything spectacular that night after applying the patch. She had told me that some people may experience warmth where it's placed but I did not have this sensation.
When I woke in the morning I moved my shoulder expecting to have my normal aches and pain - much to my surprise there was NO PAIN.....I moved my arm in all directions to try to find the pain and at the very most I could feel where the pain should be but it was so minor I wasn't sure if it was really even pain.
The patch is worn for 24-48 hrs with most of the relief happening around the 24 hr point. This was just about 12 hrs of wearing the patch overnight and I was pain free for the first time in a good year! You read this right - PAIN FREE! In my world, that isn't something that you hear or get to experience!
AHHHHH, PAIN FREE....yes it's true! A real product, an ALL NATURAL product that REALLY takes away pain where ever you have it! This patch is brand new and only available through individuals who sell it. I can tell you right now, I jumped at the opportunity to get my hands on more of these patches! I have friends all over who will appreciate the pain free living that is awaiting them in this patch! I want to make this a readily available product to anyone and everyone I know who suffers from chronic pain! I know first hand how getting even a little relief from chronic pain is - to have something that is able to keep the pain away - PRICELESS!
For about $80/mo you get 15 patches - those patches can be cut to any size so you can actually make them last a full month or two if you cut them in half and wear one for 48 hrs at a time.
$80 might seem like a high price but whats worse? Paying that much or more for a chemical RX to treat your pain or paying that much for an all natural pain remedy? I would say the later of the two. I look at it this way, I pay my chiropractor $45 a visit, per week, to relieve my pain. I can take my $80 and purchase a package of patches and see my chiropractor every other week to keep everything in alignment.....no more money than I already spend and getting full time pain relief - WINNING!
If you are interested in more information about this amazing discovery please don't hesitate to contact me - I'm telling you it's going to be a game changer for people who live with Chronic Pain - it's new and powerful!
With excitement I look forward to hearing from those of you who are serious about living pain free!
For the first 6 people who contact me, I will send you a free sample of this amazing product - I believe in it 100%!
To your health (and living pain free!)
Gerri
If you are like me and live with pain all the time day in and day out then you have got to continue reading this and be prepared to share with everyone you love and know that lives with pain.
I for one don't take medication to relieve my pain. I try all natural ways to control it and most of the time am just dealing with the pain as I go through my daily life. I visit my chiropractor about every 2 wks to keep my body in line and working good. I have found that these regular visits help more than anything else.
Long story short, a friend of mine told me about this product that relieves pain. She explained that it's all natural and there is nothing like it anywhere. Like everything else my initial thought is "yeah right" - so she sent me a sample of this product to try. It's basically a patch you put on where you experience pain. You can check it out here!
For me, at the moment, my daily pain is located in my shoulder joint. It's a deep aching pain that just won't give. So I slapped this patch on my shoulder as instructed. She said to let her know how it feels in the morning. So I went about my business for the rest of the night and went to bed wearing this patch. I didn't notice anything spectacular that night after applying the patch. She had told me that some people may experience warmth where it's placed but I did not have this sensation.
When I woke in the morning I moved my shoulder expecting to have my normal aches and pain - much to my surprise there was NO PAIN.....I moved my arm in all directions to try to find the pain and at the very most I could feel where the pain should be but it was so minor I wasn't sure if it was really even pain.
The patch is worn for 24-48 hrs with most of the relief happening around the 24 hr point. This was just about 12 hrs of wearing the patch overnight and I was pain free for the first time in a good year! You read this right - PAIN FREE! In my world, that isn't something that you hear or get to experience!
AHHHHH, PAIN FREE....yes it's true! A real product, an ALL NATURAL product that REALLY takes away pain where ever you have it! This patch is brand new and only available through individuals who sell it. I can tell you right now, I jumped at the opportunity to get my hands on more of these patches! I have friends all over who will appreciate the pain free living that is awaiting them in this patch! I want to make this a readily available product to anyone and everyone I know who suffers from chronic pain! I know first hand how getting even a little relief from chronic pain is - to have something that is able to keep the pain away - PRICELESS!
For about $80/mo you get 15 patches - those patches can be cut to any size so you can actually make them last a full month or two if you cut them in half and wear one for 48 hrs at a time.
$80 might seem like a high price but whats worse? Paying that much or more for a chemical RX to treat your pain or paying that much for an all natural pain remedy? I would say the later of the two. I look at it this way, I pay my chiropractor $45 a visit, per week, to relieve my pain. I can take my $80 and purchase a package of patches and see my chiropractor every other week to keep everything in alignment.....no more money than I already spend and getting full time pain relief - WINNING!
If you are interested in more information about this amazing discovery please don't hesitate to contact me - I'm telling you it's going to be a game changer for people who live with Chronic Pain - it's new and powerful!
With excitement I look forward to hearing from those of you who are serious about living pain free!
For the first 6 people who contact me, I will send you a free sample of this amazing product - I believe in it 100%!
To your health (and living pain free!)
Gerri
Wednesday, March 26, 2014
Spring Break time, family time, VOLLEYBALL and me.......
So here I thought it's been a few weeks since I've posted and when I looked I realize it's been a month already - sheesh. Things are "Status quo" with nothing really "new" to report. Well, one thing is new, my sister had her 2nd baby! So we have a new family member, Ms Audrey Rose Gordon. She is precious of course!
As most of you know I'm always on the look out for new and great things that will help with CFS/ME, Lupus and FMS symptoms. Well I have recently found a product and I want to tell you about it because I'm excited about it's potential. It's called "Aloha" - basically it's a dried green juice powder! SHUT UP! I literally was just thinking about how I wish there was a product that would give the benefits of juicing in a much easier form such as a powder or pre-made but good drink that was affordable....I know, I know, in my dreams! Or at least I thought! Then I see an ad on Facebook pop up one day that caught my eye - it was EXACTLY what I had been thinking about - weird I know!
They appear to be a relatively new company and the product is exactly what I've been looking for. I was able to get a sample of it and so far have found it to be just as good as it seems. I mix the powder into my daily protein smoothie because on it's own it's quite harsh tasting! I made the mistake of mixing it with just water when I first got it - ACK - I drank it but man, I won't make that mistake again! If you have ever had spirulina straight, that is exactly what it reminds me of - but I find mixing it with my smoothie drowns out the strong taste and it's palatable. I'm always looking for ways to easily incorporate lots of vegetables and goodness into my daily diet and this seems like a great way to do just that without the time/money/mess it takes to juice all the same things (and then some). Don't get me wrong, I love juicing and all the amazing health benefits but it is just too time consuming for me to do it on a regular basis anymore. For the same cost, if not less, I can get the same benefits out of a package of dried juice - easy, fast and most of all convenient. Check it out here Aloha - The Daily Good. As anyone who is dealing with the affliction of a chronic illness knows, the more good stuff we can put into our bodies, the better off we are all around. I really encourage you to check it out if you are like me and want to put the good things in but just don't have the time and energy to juice 3x or more a day. With this, you take it once a day and you are good to go. There are 14 organic ingredients that promise to help detoxify, energize, hydrate and best of all BOOST IMMUNE SYSTEM function! The process they use to dry the ingredients doesn't take away the nutrients or fiber which a lot of the time juicing does - so there is another bonus! I've been using it just for a few days now so I can't honestly report anything over the top with it but I do plan on continuing to use it for the internal benefits I believe it will deliver. A strong immune system is a huge plus for me. I can also say I have noticed a temporary increase in my energy when I take it so that is always of course a huge plus!
In other news, it's spring break for myself and my kids - very much needed I might add! I was thoroughly exhausted by the time it came along. Last Friday was the first day and honestly I haven't done a whole lot since. We did have an all day volleyball tournament on Sunday, but aside from that I've pretty much been a lazy lounger......of course I'm still keeping my normal schedule of going to be around 8 or 9pm but I'm able to sleep in past 5:30 am which has been nice. I'm finding myself getting up around 8am, still tired but unable to sleep any longer. I also have been noticing I wake up a lot at night, which isn't uncommon and surely part of why I'm always so tired, I'm not getting restful sleep.
So I wonder how many of you feel like I do - lazy. I often feel like my illness has made me very "lazy" for lack of a better term - I feel lazy because I just don't want to do ANYTHING most of the time. It makes me feel bad because I know I "should" be outside enjoying the nice weather, exercising, taking the kids out to do things etc.......so I start to get on myself and negative thinking hits. I can sit here all day in my PJ's - easy. So I wonder, is it just me being LAZY or is it truly because it's not often that I get to do it and when the opportunity shows itself I'm all over it? Am I lazy? Some would say YES. I on the other hand am not sure at this point. While I know I'm chronically sick, it's hard to convince even myself at times.
Volleyball is coming to an end soon - this has kept us very busy and on the go most of the time. With 3-4 practices a week and an all day "power" each Sunday we find very little time to do much else. Early mornings and late nights tend to be our M.O. during the club season. As of May there will be a little break in the action before the summer camps start up with the school. My daughter loves the sport and we are so blessed to be able to give her the opportunity to play for a club and in school as well as the countless other things she gets invited to do. My husband and I love watching her too. Our son on the other hand, not so much. He isn't a big fan of noises so volleyball is really something that stresses him out. With his sensory issues it's not the most accommodating sport for him.
Now I have a question for those of you with CFS/ME and/or FMS. What strategies have you found work for you to keep you in a good place with your illness and struggles that come with it? I feel like I do all the "right" things most of the time but still find myself very tired - some days more than others. Some days it's very hard to get myself through and I can't wait to get home and collapse in my rocking chair/recliner. I'm just curious what methods or things you do that keep you on top of your illness and what things you find make you crash and burn?? Thanks in advance for sharing as I know it can be a very personal thing.
Personally, I find that every day is so different from the last, especially dependent on what I did or didn't do for myself. Things we put into our bodies will effect how we feel in the near and sometimes not so near future. I find it hard to stay away from sugary things though, which for me is a downfall as I'm sure that lends to a lot of my symptoms of being extra tired. I also have a very hard time managing my weight NO MATTER WHAT I DO....Since being on the Body By Vi challenge I have found it easier to maintain my weight and I enjoy the fact that I'm getting great nutrients from the protein shakes but I wish I could LOSE weight as effortlessly as it seems others do.
At any rate, I hope this finds you well and enjoying spring! Please send me comments if you have anything to share or say about anything I've put in my blog. Let me know you are out there! I am beginning to feel like I'm writing to a black hole! I'm off to get some laundry done (the never ending pile seems to get bigger by the day) and then spend the evening in the volleyball gym - it is our life for now!
To your health!
Gerri
As most of you know I'm always on the look out for new and great things that will help with CFS/ME, Lupus and FMS symptoms. Well I have recently found a product and I want to tell you about it because I'm excited about it's potential. It's called "Aloha" - basically it's a dried green juice powder! SHUT UP! I literally was just thinking about how I wish there was a product that would give the benefits of juicing in a much easier form such as a powder or pre-made but good drink that was affordable....I know, I know, in my dreams! Or at least I thought! Then I see an ad on Facebook pop up one day that caught my eye - it was EXACTLY what I had been thinking about - weird I know!
They appear to be a relatively new company and the product is exactly what I've been looking for. I was able to get a sample of it and so far have found it to be just as good as it seems. I mix the powder into my daily protein smoothie because on it's own it's quite harsh tasting! I made the mistake of mixing it with just water when I first got it - ACK - I drank it but man, I won't make that mistake again! If you have ever had spirulina straight, that is exactly what it reminds me of - but I find mixing it with my smoothie drowns out the strong taste and it's palatable. I'm always looking for ways to easily incorporate lots of vegetables and goodness into my daily diet and this seems like a great way to do just that without the time/money/mess it takes to juice all the same things (and then some). Don't get me wrong, I love juicing and all the amazing health benefits but it is just too time consuming for me to do it on a regular basis anymore. For the same cost, if not less, I can get the same benefits out of a package of dried juice - easy, fast and most of all convenient. Check it out here Aloha - The Daily Good. As anyone who is dealing with the affliction of a chronic illness knows, the more good stuff we can put into our bodies, the better off we are all around. I really encourage you to check it out if you are like me and want to put the good things in but just don't have the time and energy to juice 3x or more a day. With this, you take it once a day and you are good to go. There are 14 organic ingredients that promise to help detoxify, energize, hydrate and best of all BOOST IMMUNE SYSTEM function! The process they use to dry the ingredients doesn't take away the nutrients or fiber which a lot of the time juicing does - so there is another bonus! I've been using it just for a few days now so I can't honestly report anything over the top with it but I do plan on continuing to use it for the internal benefits I believe it will deliver. A strong immune system is a huge plus for me. I can also say I have noticed a temporary increase in my energy when I take it so that is always of course a huge plus!
In other news, it's spring break for myself and my kids - very much needed I might add! I was thoroughly exhausted by the time it came along. Last Friday was the first day and honestly I haven't done a whole lot since. We did have an all day volleyball tournament on Sunday, but aside from that I've pretty much been a lazy lounger......of course I'm still keeping my normal schedule of going to be around 8 or 9pm but I'm able to sleep in past 5:30 am which has been nice. I'm finding myself getting up around 8am, still tired but unable to sleep any longer. I also have been noticing I wake up a lot at night, which isn't uncommon and surely part of why I'm always so tired, I'm not getting restful sleep.
So I wonder how many of you feel like I do - lazy. I often feel like my illness has made me very "lazy" for lack of a better term - I feel lazy because I just don't want to do ANYTHING most of the time. It makes me feel bad because I know I "should" be outside enjoying the nice weather, exercising, taking the kids out to do things etc.......so I start to get on myself and negative thinking hits. I can sit here all day in my PJ's - easy. So I wonder, is it just me being LAZY or is it truly because it's not often that I get to do it and when the opportunity shows itself I'm all over it? Am I lazy? Some would say YES. I on the other hand am not sure at this point. While I know I'm chronically sick, it's hard to convince even myself at times.
Volleyball is coming to an end soon - this has kept us very busy and on the go most of the time. With 3-4 practices a week and an all day "power" each Sunday we find very little time to do much else. Early mornings and late nights tend to be our M.O. during the club season. As of May there will be a little break in the action before the summer camps start up with the school. My daughter loves the sport and we are so blessed to be able to give her the opportunity to play for a club and in school as well as the countless other things she gets invited to do. My husband and I love watching her too. Our son on the other hand, not so much. He isn't a big fan of noises so volleyball is really something that stresses him out. With his sensory issues it's not the most accommodating sport for him.
Now I have a question for those of you with CFS/ME and/or FMS. What strategies have you found work for you to keep you in a good place with your illness and struggles that come with it? I feel like I do all the "right" things most of the time but still find myself very tired - some days more than others. Some days it's very hard to get myself through and I can't wait to get home and collapse in my rocking chair/recliner. I'm just curious what methods or things you do that keep you on top of your illness and what things you find make you crash and burn?? Thanks in advance for sharing as I know it can be a very personal thing.
Personally, I find that every day is so different from the last, especially dependent on what I did or didn't do for myself. Things we put into our bodies will effect how we feel in the near and sometimes not so near future. I find it hard to stay away from sugary things though, which for me is a downfall as I'm sure that lends to a lot of my symptoms of being extra tired. I also have a very hard time managing my weight NO MATTER WHAT I DO....Since being on the Body By Vi challenge I have found it easier to maintain my weight and I enjoy the fact that I'm getting great nutrients from the protein shakes but I wish I could LOSE weight as effortlessly as it seems others do.
At any rate, I hope this finds you well and enjoying spring! Please send me comments if you have anything to share or say about anything I've put in my blog. Let me know you are out there! I am beginning to feel like I'm writing to a black hole! I'm off to get some laundry done (the never ending pile seems to get bigger by the day) and then spend the evening in the volleyball gym - it is our life for now!
To your health!
Gerri
Saturday, August 25, 2012
"NORMAL" again - seriously?
I wanted to update about my Dr visit with the new endo and the test results - apparently they are so normal that she doesn't feel any kind of thyroid hormone is necessary. I guess that is "good" news? But really with all my symptoms that scream "HYPOTHYROIDISM" I'm a bit disappointed in the results.
I know that probably sounds crazy and weird to the average person reading this but if you can, just for a moment, try to understand how it would feel if you knew in your heart that something just isn't right, and to always have "normal" test results yet you have every symptom of certain conditions - you would be frustrated too. I guess it just means I go back to researching possible reasons why and that means back to the drawing board! I don't know if there is even anything out there left to uncover, but if there is, I will certainly uncover it.
I'm still determined to find the answers, more answers..... but am wondering if I ever will? Am I just stuck in this body of aches, pains, fatigue and exhaustion with temporary relief that will never be permanent? It's depressing at the least to think that life will forever be like this but I have to forge forward and know that there are always new discoveries and that I will stumble on something that gives me the answers I seek. It's a very long journey to finding my health and I'm realizing more and more everyday that it's not a quick fix, it's not something that will just happen and that it is something that I have to work on everyday, every minute and every second that I can.
I often wish I was, just for a day, the "normal" person that my blood shows I am...the "normal" person who doesn't have to take extra precaution in what they eat, what they do and how they do it, the "normal" person that can sleep for 8 hours and feel great, the "normal" person who can be active all day and feel great for it, the "normal" person who never gets a migraine or a headache for no reason, the "normal" person who doesn't have to plan everything they do in order to make sure they don't aggravate their body into an episode of pain that will last for who knows how long, the "normal" person that just feels good, all the time...........enough for wishing, I'm not that person anymore and have to accept that most likely I never will be again.
Instead I will accept that the path I'm on (as best as I can, at times it's really hard) is the path I'm suppose to be on, the path that God has given me. Maybe I'm suppose to teach others how to cope with the illness they have, maybe I'm suppose to help those who come into contact with me on how to make themselves feel better, maybe, just maybe I've been given the cards I've been given to help me learn how to be more empathetic and sympathetic to those even less fortunate. I don't know the "why's" but I do know that I need to continue to search for anything and everything I can find to try to find the "why's" if they are out there.
Until next time, may you have pain free days and nights and peace in your heart
Gerri
I know that probably sounds crazy and weird to the average person reading this but if you can, just for a moment, try to understand how it would feel if you knew in your heart that something just isn't right, and to always have "normal" test results yet you have every symptom of certain conditions - you would be frustrated too. I guess it just means I go back to researching possible reasons why and that means back to the drawing board! I don't know if there is even anything out there left to uncover, but if there is, I will certainly uncover it.
I'm still determined to find the answers, more answers..... but am wondering if I ever will? Am I just stuck in this body of aches, pains, fatigue and exhaustion with temporary relief that will never be permanent? It's depressing at the least to think that life will forever be like this but I have to forge forward and know that there are always new discoveries and that I will stumble on something that gives me the answers I seek. It's a very long journey to finding my health and I'm realizing more and more everyday that it's not a quick fix, it's not something that will just happen and that it is something that I have to work on everyday, every minute and every second that I can.
I often wish I was, just for a day, the "normal" person that my blood shows I am...the "normal" person who doesn't have to take extra precaution in what they eat, what they do and how they do it, the "normal" person that can sleep for 8 hours and feel great, the "normal" person who can be active all day and feel great for it, the "normal" person who never gets a migraine or a headache for no reason, the "normal" person who doesn't have to plan everything they do in order to make sure they don't aggravate their body into an episode of pain that will last for who knows how long, the "normal" person that just feels good, all the time...........enough for wishing, I'm not that person anymore and have to accept that most likely I never will be again.
Instead I will accept that the path I'm on (as best as I can, at times it's really hard) is the path I'm suppose to be on, the path that God has given me. Maybe I'm suppose to teach others how to cope with the illness they have, maybe I'm suppose to help those who come into contact with me on how to make themselves feel better, maybe, just maybe I've been given the cards I've been given to help me learn how to be more empathetic and sympathetic to those even less fortunate. I don't know the "why's" but I do know that I need to continue to search for anything and everything I can find to try to find the "why's" if they are out there.
Until next time, may you have pain free days and nights and peace in your heart
Gerri
Friday, April 27, 2012
It's been a while - I'm still here though!
I know it's been a while since I last posted so it's time for an update! First, I hope you are all doing fantastic and enjoying everyday that you are given.
I am happy to report that I'm continuing to feel more and more like the old me again and it feels great! Of course I have my moments and my days where I feel like crud but more and more I have better days which is really great!
I've got my "spunk" back and I can't tell you how great it really feels. Anyone who has gone from very ill, bedridden, feeling like there is no hope etc., to living life again can understand what it feels like to be back! Anyone who is still on the journey to find themselves again, keep it up, it's worth it in the end! And YOU WILL find yourself again if you do the things you need to do in order for that to happen. This condition is not going to fix itself without a fight from you! If you can go as natural as possible, that is the best way to go, it might be harder but it's better at the end of the day, no doubt!
So let me backtrack to January real quick - I finished my treatments with the Fibromyalgia Center just after the first of the year. My intentions and as the program is, I was to go on a maintenance schedule with them having an adjustment 1x a month, however they did some re-arranging of the practice and I wasn't able to get into see them as easily as I could before when I was in the program. I really honestly feel that they dropped the ball on my "after care" and I have yet to hear from them, not even a "how are you doing, do you need to come see us" call or anything. I tried to get an appointment with the Dr and the acupuncturist 4x but they put it on me to call each one to schedule since they weren't all in the same office anymore - same building just different offices....I was completely put off by that considering prior to them reorganizing I could call and schedule with both very easily. I'm a bit disappointed in that fact so about two weeks ago I set out to find myself a closer chiropractor who could help me with my fibromyalgia and keeping me on the right path to better health.
After having gone through the 1x a week program and combining Chiropractic care, acupuncture, massage and specific nutrients into my life it is obvious that this mixture REALLY WORKS to help people with this condition. It isn't an overnight fix by any means and will be an ongoing thing in order to stay on top of the condition and symptoms. And of course, most insurance companies don't cover those things which is so unfortunate because I think more people could get help if they could use their insurance for that help. It's sad to know that there are so many people out there who suffer and take heavy medications that either cover up the symptoms or in some cases make them worse off when natural and holistic care is truly the course to take in the long run. I 100% believe this for anyone who deals with fibromyalgia and chronic fatigue as well as many other chronic health conditions. Heck, if more people would use chiropractic care, they would be healthier all around.
After visiting with several local Dr's I did go see one that my mom has seen. It turns out that he also has a massage therapist in the office and the Dr himself does acupuncture - SCORE! As I was sitting in his office waiting I also noticed he offers the Nutrient blood test that I had taken back in July with the other place - DOUBLE SCORE! I'm a beyond THRILLED that I went to see him because essentially I will be getting the exact same care I was getting at the other place and will be able to save a lot of time doing it! The new place I'm going is literally 10 minutes from my house vs an hour drive.......so you can see why I'm so happy!
Yesterday I had my first adjustment with my new Dr - Dr Hatch and it was obvious I needed it bad! My hips up to my neck were way out and I'm off about 3/4 inch on the right side which is where I get my major hip pain. I'm confident that his care will be exactly what I need to stay on the right track. I'm scheduled to have an hour and a half massage on Monday with the massage therapist which makes me a happy camper - primarily because he couldn't adjust my neck it was so stiff and because I'm having such pain in my right shoulder and numbness in my hands again. So the massage will work on that and I'll also be getting the acupuncture work on that shoulder to work on eliminating those issues again.
Since I haven't had any of it since January I knew and could feel in my body that I was starting to backslide so I'm really thankful that it all worked out so good and that I took the initiative to go see him...in my town there are literally about 20 or so chiropractors in the general area - but I don't think any of the others combine all these services in one place.
For now I'll be going to see him 1x a week just to get my body/mind/spirit back into a good place, then we'll go down to 1x every other week then eventually 1x a month.
Since I've been feeling so much better I've also been able to get my business up and going again. It's taken a few months to get the momentum going but it's going now and I'm thrilled I actually have the energy and desire to get out and do the parties.
My daughter has been playing volleyball since late last year and that has been keeping us busy as well. It's just really nice to be able to enjoy my kids, husband and friends again. It had been a long time since I could really say that I was excited about anything in my life because I felt so crappy all the time, morning, day, night, it just didn't matter - and when I did have business to tend to, more than not I had to give it away to someone else because I just didn't have it in me. All of that is behind me now though!
Someone recently asked me what would happen or what I would do if I got sick again - my response to them was "that isn't an option and it's not going to happen" - I think my response surprised them but I was/am very serious when I say that. I've learned how to listen to my body and know that as long as I do that and do the things I need to take care of myself that I won't be laid out like I was when this all first started back at the mid of 2010. And, if I have any power to avoid being THAT SICK again, I will avoid it with all I've got!
For anyone who is reading this who is in the thick of being ill with this or any other chronic condition, please feel free to contact me if you like. My blog has always been dedicated to helping others find a way to feel better - please browse my past postings and the links I've provided for you - for an entire year, all I did was research and find information - and I believe that is why I'm where I am today - because I was determined to get my life back....it took a little time but again, I am living proof that if you want it bad enough, you'll get there!
To your health and happiness friends! And please remember, if you don't take your health into your own hands and do something about it, nobody else will!
I am happy to report that I'm continuing to feel more and more like the old me again and it feels great! Of course I have my moments and my days where I feel like crud but more and more I have better days which is really great!
I've got my "spunk" back and I can't tell you how great it really feels. Anyone who has gone from very ill, bedridden, feeling like there is no hope etc., to living life again can understand what it feels like to be back! Anyone who is still on the journey to find themselves again, keep it up, it's worth it in the end! And YOU WILL find yourself again if you do the things you need to do in order for that to happen. This condition is not going to fix itself without a fight from you! If you can go as natural as possible, that is the best way to go, it might be harder but it's better at the end of the day, no doubt!
So let me backtrack to January real quick - I finished my treatments with the Fibromyalgia Center just after the first of the year. My intentions and as the program is, I was to go on a maintenance schedule with them having an adjustment 1x a month, however they did some re-arranging of the practice and I wasn't able to get into see them as easily as I could before when I was in the program. I really honestly feel that they dropped the ball on my "after care" and I have yet to hear from them, not even a "how are you doing, do you need to come see us" call or anything. I tried to get an appointment with the Dr and the acupuncturist 4x but they put it on me to call each one to schedule since they weren't all in the same office anymore - same building just different offices....I was completely put off by that considering prior to them reorganizing I could call and schedule with both very easily. I'm a bit disappointed in that fact so about two weeks ago I set out to find myself a closer chiropractor who could help me with my fibromyalgia and keeping me on the right path to better health.
After having gone through the 1x a week program and combining Chiropractic care, acupuncture, massage and specific nutrients into my life it is obvious that this mixture REALLY WORKS to help people with this condition. It isn't an overnight fix by any means and will be an ongoing thing in order to stay on top of the condition and symptoms. And of course, most insurance companies don't cover those things which is so unfortunate because I think more people could get help if they could use their insurance for that help. It's sad to know that there are so many people out there who suffer and take heavy medications that either cover up the symptoms or in some cases make them worse off when natural and holistic care is truly the course to take in the long run. I 100% believe this for anyone who deals with fibromyalgia and chronic fatigue as well as many other chronic health conditions. Heck, if more people would use chiropractic care, they would be healthier all around.
After visiting with several local Dr's I did go see one that my mom has seen. It turns out that he also has a massage therapist in the office and the Dr himself does acupuncture - SCORE! As I was sitting in his office waiting I also noticed he offers the Nutrient blood test that I had taken back in July with the other place - DOUBLE SCORE! I'm a beyond THRILLED that I went to see him because essentially I will be getting the exact same care I was getting at the other place and will be able to save a lot of time doing it! The new place I'm going is literally 10 minutes from my house vs an hour drive.......so you can see why I'm so happy!
Yesterday I had my first adjustment with my new Dr - Dr Hatch and it was obvious I needed it bad! My hips up to my neck were way out and I'm off about 3/4 inch on the right side which is where I get my major hip pain. I'm confident that his care will be exactly what I need to stay on the right track. I'm scheduled to have an hour and a half massage on Monday with the massage therapist which makes me a happy camper - primarily because he couldn't adjust my neck it was so stiff and because I'm having such pain in my right shoulder and numbness in my hands again. So the massage will work on that and I'll also be getting the acupuncture work on that shoulder to work on eliminating those issues again.
Since I haven't had any of it since January I knew and could feel in my body that I was starting to backslide so I'm really thankful that it all worked out so good and that I took the initiative to go see him...in my town there are literally about 20 or so chiropractors in the general area - but I don't think any of the others combine all these services in one place.
For now I'll be going to see him 1x a week just to get my body/mind/spirit back into a good place, then we'll go down to 1x every other week then eventually 1x a month.
Since I've been feeling so much better I've also been able to get my business up and going again. It's taken a few months to get the momentum going but it's going now and I'm thrilled I actually have the energy and desire to get out and do the parties.
My daughter has been playing volleyball since late last year and that has been keeping us busy as well. It's just really nice to be able to enjoy my kids, husband and friends again. It had been a long time since I could really say that I was excited about anything in my life because I felt so crappy all the time, morning, day, night, it just didn't matter - and when I did have business to tend to, more than not I had to give it away to someone else because I just didn't have it in me. All of that is behind me now though!
Someone recently asked me what would happen or what I would do if I got sick again - my response to them was "that isn't an option and it's not going to happen" - I think my response surprised them but I was/am very serious when I say that. I've learned how to listen to my body and know that as long as I do that and do the things I need to take care of myself that I won't be laid out like I was when this all first started back at the mid of 2010. And, if I have any power to avoid being THAT SICK again, I will avoid it with all I've got!
For anyone who is reading this who is in the thick of being ill with this or any other chronic condition, please feel free to contact me if you like. My blog has always been dedicated to helping others find a way to feel better - please browse my past postings and the links I've provided for you - for an entire year, all I did was research and find information - and I believe that is why I'm where I am today - because I was determined to get my life back....it took a little time but again, I am living proof that if you want it bad enough, you'll get there!
To your health and happiness friends! And please remember, if you don't take your health into your own hands and do something about it, nobody else will!
Monday, February 6, 2012
An Open Letter
Having Chronic Fatigue Syndrome (AKA CFS) and Fibromyalgia (AKA Fibro or FMS) means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS or FMS and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand..........................................................
These are the things that I would like you to understand about me before you judge me or decide that I'm just lazy..........
Please understand that being sick doesn’t mean I’m not still a human being. Sometimes I have to spend most of my day flat on my back in bed and I might not seem like great company, but I’m still me stuck inside this body. I still worry about work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s very common) that one day I am able to walk to the park and back, do Zumba and play with the kids while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. CFS and/or FMS may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct – if I could do it, believe me I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. CFS and/or FMS does not forgive.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS and/or Fibro then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFS and Fibro, if something worked for everyone we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. He’s open to new suggestions and is a great guy, and he takes what I say seriously.
Please understand that getting better from an illness like this can be very slow. People with CFS and/or FMS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
I depend on you – people who are not sick – for many things.
But most importantly............................................................
.....................................................I need you to understand me.
These are the things that I would like you to understand about me before you judge me or decide that I'm just lazy..........
Please understand that being sick doesn’t mean I’m not still a human being. Sometimes I have to spend most of my day flat on my back in bed and I might not seem like great company, but I’m still me stuck inside this body. I still worry about work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s very common) that one day I am able to walk to the park and back, do Zumba and play with the kids while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. CFS and/or FMS may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct – if I could do it, believe me I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. CFS and/or FMS does not forgive.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS and/or Fibro then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFS and Fibro, if something worked for everyone we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. He’s open to new suggestions and is a great guy, and he takes what I say seriously.
Please understand that getting better from an illness like this can be very slow. People with CFS and/or FMS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
I depend on you – people who are not sick – for many things.
But most importantly............................................................
.....................................................I need you to understand me.
Thursday, June 30, 2011
Cautiously hopeful.....
My appointment at the Colorado Fibromyalgia Center went really well. I was pleased that the intake Dr spent about 2 hrs with me and was very informative.
The program is treatment based vs diagnosis based so they really focus on treating each person and their symptoms in an effort to eliminate the symptoms so the patient feels better. The treatment program lasts about 4-6 months and optimally they want me to come in 1x a week for treatment. Due to the fact that I'm traveling an hour each way to get there they are willing to work with me and if it is feasible to give me 2 treatments in one appointment they will. Sometimes though, depending on the treatment needed, they wouldn't be able to do that. An hour drive isn't really so bad though.
So I'm going to go forward with the treatment at this center and am, as the title of this entry states, Cautiously hopeful - I don't want to get too excited just in case.....however I do really feel that their treatment approaches are really going to make some significant improvements in my overall health.
The center does take more of a holistic and natural approach to healing - while they do also offer some western medicine treatments when indicated necessary, they do try to use more alternative and holistic approaches.
I am still also pursuing an appointment with the Mayo Clinic while I am getting treatment at this center. I figure I might as well start getting help while I'm working on the Mayo Clinic and between the two I should be able to figure out what exactly I'm looking at as far as the future of my own health is concerned.
Yesterday I was feeling kind of guilty for pursuing both avenues however a friend of mine sent me a video that really reminded me that it's ok to seek help and answers for my own health until I'm satisfied with the results - it's a great video that I recommend you take a moment to watch...........e-patient Dave - I'm certain that most of my readers will agree with the message that is delivered in the video.
While I was at my appointment I also had some blood drawn for a blood test called "micronutrient testing" through a laboratory called "spectracell" - I've included the link for you in case this is something that anyone else might want to look into - I'm really excited to see the results of this test as I really think it's going to lead me and the medical team I'm working with in the right direction to helping my body get back to optimal functioning status.........check out the link to Spectracell laboratories and the information for the Micronutrient blood test. It's pretty interesting stuff!
This week in addition to the unrelenting fatigue, I've been dealing with consistent headaches which have me really feeling crappy but motrin seems to help me get past the pain and get through the day. I've been waking up with the headaches everyday but they haven't been to the point of "migraine" status so I have been ok with just a nice dose of mortrin a couple times a day. I'm not certain as to why the headaches have returned but figure it's just part of everything else, could be heat related, medication related - who knows why any of this happens at this point.....
I am looking forward to getting started on my treatments with the Fibromyalgia Center. As of now I have a phone appointment on July 8th with the Dr to go over her findings from my medical records and yesterday's visit and the proposed treatment plan. Then on the 11th I'll go in for my first appointment with the massage therapist and the Dr who does nutrient injections.
Part of my treatment will be massage therapy which will help "desensitize" my muscles and tissues - I had told the Dr yesterday that I don't enjoy massages as it causes pain for several days following so she feels that working on desensitizing my muscles and tissues will be an important part of my treatment - this will also serve to help release tension areas that is causing other problems in my body. As the belief in this type of treatment plan is that when one part of the body is under stress or not optimal it will effect other parts of the body that and so on as everything is connected to work together. I wish it was enjoyable for me to get a massage - maybe someday it will be.
Until next time, my journey continues as I move closer to my goal of getting back to how I was prior to the onset of this craziness or even better than that! I'm really looking forward to the beginning of something great that could end up proving to heal me even beyond my expectations.
The program is treatment based vs diagnosis based so they really focus on treating each person and their symptoms in an effort to eliminate the symptoms so the patient feels better. The treatment program lasts about 4-6 months and optimally they want me to come in 1x a week for treatment. Due to the fact that I'm traveling an hour each way to get there they are willing to work with me and if it is feasible to give me 2 treatments in one appointment they will. Sometimes though, depending on the treatment needed, they wouldn't be able to do that. An hour drive isn't really so bad though.
So I'm going to go forward with the treatment at this center and am, as the title of this entry states, Cautiously hopeful - I don't want to get too excited just in case.....however I do really feel that their treatment approaches are really going to make some significant improvements in my overall health.
The center does take more of a holistic and natural approach to healing - while they do also offer some western medicine treatments when indicated necessary, they do try to use more alternative and holistic approaches.
I am still also pursuing an appointment with the Mayo Clinic while I am getting treatment at this center. I figure I might as well start getting help while I'm working on the Mayo Clinic and between the two I should be able to figure out what exactly I'm looking at as far as the future of my own health is concerned.
Yesterday I was feeling kind of guilty for pursuing both avenues however a friend of mine sent me a video that really reminded me that it's ok to seek help and answers for my own health until I'm satisfied with the results - it's a great video that I recommend you take a moment to watch...........e-patient Dave - I'm certain that most of my readers will agree with the message that is delivered in the video.
While I was at my appointment I also had some blood drawn for a blood test called "micronutrient testing" through a laboratory called "spectracell" - I've included the link for you in case this is something that anyone else might want to look into - I'm really excited to see the results of this test as I really think it's going to lead me and the medical team I'm working with in the right direction to helping my body get back to optimal functioning status.........check out the link to Spectracell laboratories and the information for the Micronutrient blood test. It's pretty interesting stuff!
This week in addition to the unrelenting fatigue, I've been dealing with consistent headaches which have me really feeling crappy but motrin seems to help me get past the pain and get through the day. I've been waking up with the headaches everyday but they haven't been to the point of "migraine" status so I have been ok with just a nice dose of mortrin a couple times a day. I'm not certain as to why the headaches have returned but figure it's just part of everything else, could be heat related, medication related - who knows why any of this happens at this point.....
I am looking forward to getting started on my treatments with the Fibromyalgia Center. As of now I have a phone appointment on July 8th with the Dr to go over her findings from my medical records and yesterday's visit and the proposed treatment plan. Then on the 11th I'll go in for my first appointment with the massage therapist and the Dr who does nutrient injections.
Part of my treatment will be massage therapy which will help "desensitize" my muscles and tissues - I had told the Dr yesterday that I don't enjoy massages as it causes pain for several days following so she feels that working on desensitizing my muscles and tissues will be an important part of my treatment - this will also serve to help release tension areas that is causing other problems in my body. As the belief in this type of treatment plan is that when one part of the body is under stress or not optimal it will effect other parts of the body that and so on as everything is connected to work together. I wish it was enjoyable for me to get a massage - maybe someday it will be.
Until next time, my journey continues as I move closer to my goal of getting back to how I was prior to the onset of this craziness or even better than that! I'm really looking forward to the beginning of something great that could end up proving to heal me even beyond my expectations.
Tuesday, June 28, 2011
I have an appointment
at the Colorado Fibromyalgia Clinic tomorrow morning. I'm nervous, excited and hopeful for what will come from this appointment. I'm sitting here with a 16 page "questionnaire" that I need to fill out for them too....they certainly cover all the bases but some of the questions are very vague. I will do my best to answer everything as best I can and give as much information as I'm able to give.....there is so much to what's been going on.
Update from my last post: I'm feeling better from the cold/sinus infection - I guess the meds took care of that! I got worried during the course of antibiotics as my chest was really tight for a couple days but that went away thank goodness. My primary Dr contacted the Mayo Clinic as he had said he would and apparently they needed him to fill out some forms then I received a call this week from the Dr office telling me the Mayo Clinic wants me to have a physical with my primary......I'm not sure if this is a pre-screening type thing or what is going on really. My Dr has me coming in for this physical on Friday of this week so hopefully I'll find out more information from him during that appointment. He seems to be really on top of it and helping me out so I do appreciate that! In the meantime I'm also going to this other clinic just in case the Mayo Clinic doesn't accept me or has a really long wait to see me.......seems like between all the appointments and exams someone will figure something out. There are so many possibilities of what is going on I really hope I am on the right path to getting it figured out.
Today I was out for a few hours doing some much needed grocery shopping - I'm wiped out from that! Crazy how going to 2 stores over a 3 hr period just takes everything out of me. I hate it.
It's so hard to explain to someone who has never had to deal with this type of chronic illness just how tired I always am or how ill I feel most of the time. Over the past several days I've also had some pretty bad headaches which has just added to everything else. On a good note, my medication is keeping most of my pain at bay so I'm mainly dealing with the headaches and extreme fatigue constantly. Honestly I just don't understand really why I can sleep 10+ hrs a night and still wake up so tired.....it takes me a good hour or longer to really fully wake up and then after a few hours I'm just spent even if I haven't done anything. It really takes all I have to spend the day out and about with the family or just doing things that need to get done. I really want my life back! I'm too young to be so tired and lacking energy all the time!
On another note and something interesting I found today on one of the many Fibromyalgia support group sites I belong to. I read some information from someone who was bedridden for 4 yrs with CFS/fibro.....this person wrote a book about it but also shared a list of supplements that she claims helped her to get her life and health back. They are supplements that can be purchased anywhere that sells vitamins so I'm going to take the list to the Dr to see if it's something I should be doing.......some I already have been taking off and on, some I would need to go get but before I do that I want to ask the Dr. what she thinks. If you remember, earlier in the year I had started taking some supplements that I had read about but, because I didn't see any change in my condition I stopped taking them.......I'm really bad about that when I don't see an improvement.
For those of you who might be interested, the recommended supplements and amounts are:
Co-Q-10 - 100mg This is essential for every cell in the body for energy. The new form of Co-Q-10 called Ubiaquinol helps by adding more energy because it is already broken down and goes right to work by attaching to the cells in the body to produce energy.
B-12 sublingual 500 mcg twice daily, this is dissolved under the tongue and is more effective and helps with energy and the nervous system.
Calcium 1000mg, magnesium 400mg and zinc 25 mg.
Calcium for bones; magnesium for inflammation; zinc for immune system health.
Vitamin C 500mg once daily for immune system
Vitamin E 400 Iu once daily Immune system and energy
Vitamin D-3 1,000 Iu twice daily. Helps with vision problems and long bone pain (if you are deficient of Vitamin D, your doctor will have you take a larger dose). Most people with CFS/ME or FM are so difficient that they need larger doses, so it’s a good idea to have it checked by a Vitamin D 3 blood test.
Ginkgo Biloba 60 mg once daily helps memory and brain fog.
Garlic 500 mg once daily (oderless). Good for immune system and is a natural antibiotic.
Omega 3 Salmon Oil 500mg twice daily. Good for immune system and heart health and helps to balance hormones. Many fish oils contain shellfish to which some people are allergic. For this reason, Salmon Oil might be the better choice.
Milk Thistle 175mg twice daily for 3 months, then 1 per day for liver health. To be taken with Probiotic Acidophilus twice daily for 3 months, then 1 per day for intestine well-being.
Milk Thistle and Acidophilus remove toxins from the body and help retard yeast build up
Wish me luck! I'll definitely post an update tomorrow from my appointment at this Fibromyalgia clinic. It's about 2 hrs away so I'll be gone all day but will get an update out as soon as I can once I return. Hopefully there will be some good news and hope for this journey to finally take a turn towards a healthier me!
Update from my last post: I'm feeling better from the cold/sinus infection - I guess the meds took care of that! I got worried during the course of antibiotics as my chest was really tight for a couple days but that went away thank goodness. My primary Dr contacted the Mayo Clinic as he had said he would and apparently they needed him to fill out some forms then I received a call this week from the Dr office telling me the Mayo Clinic wants me to have a physical with my primary......I'm not sure if this is a pre-screening type thing or what is going on really. My Dr has me coming in for this physical on Friday of this week so hopefully I'll find out more information from him during that appointment. He seems to be really on top of it and helping me out so I do appreciate that! In the meantime I'm also going to this other clinic just in case the Mayo Clinic doesn't accept me or has a really long wait to see me.......seems like between all the appointments and exams someone will figure something out. There are so many possibilities of what is going on I really hope I am on the right path to getting it figured out.
Today I was out for a few hours doing some much needed grocery shopping - I'm wiped out from that! Crazy how going to 2 stores over a 3 hr period just takes everything out of me. I hate it.
It's so hard to explain to someone who has never had to deal with this type of chronic illness just how tired I always am or how ill I feel most of the time. Over the past several days I've also had some pretty bad headaches which has just added to everything else. On a good note, my medication is keeping most of my pain at bay so I'm mainly dealing with the headaches and extreme fatigue constantly. Honestly I just don't understand really why I can sleep 10+ hrs a night and still wake up so tired.....it takes me a good hour or longer to really fully wake up and then after a few hours I'm just spent even if I haven't done anything. It really takes all I have to spend the day out and about with the family or just doing things that need to get done. I really want my life back! I'm too young to be so tired and lacking energy all the time!
On another note and something interesting I found today on one of the many Fibromyalgia support group sites I belong to. I read some information from someone who was bedridden for 4 yrs with CFS/fibro.....this person wrote a book about it but also shared a list of supplements that she claims helped her to get her life and health back. They are supplements that can be purchased anywhere that sells vitamins so I'm going to take the list to the Dr to see if it's something I should be doing.......some I already have been taking off and on, some I would need to go get but before I do that I want to ask the Dr. what she thinks. If you remember, earlier in the year I had started taking some supplements that I had read about but, because I didn't see any change in my condition I stopped taking them.......I'm really bad about that when I don't see an improvement.
For those of you who might be interested, the recommended supplements and amounts are:
Co-Q-10 - 100mg This is essential for every cell in the body for energy. The new form of Co-Q-10 called Ubiaquinol helps by adding more energy because it is already broken down and goes right to work by attaching to the cells in the body to produce energy.
B-12 sublingual 500 mcg twice daily, this is dissolved under the tongue and is more effective and helps with energy and the nervous system.
Calcium 1000mg, magnesium 400mg and zinc 25 mg.
Calcium for bones; magnesium for inflammation; zinc for immune system health.
Vitamin C 500mg once daily for immune system
Vitamin E 400 Iu once daily Immune system and energy
Vitamin D-3 1,000 Iu twice daily. Helps with vision problems and long bone pain (if you are deficient of Vitamin D, your doctor will have you take a larger dose). Most people with CFS/ME or FM are so difficient that they need larger doses, so it’s a good idea to have it checked by a Vitamin D 3 blood test.
Ginkgo Biloba 60 mg once daily helps memory and brain fog.
Garlic 500 mg once daily (oderless). Good for immune system and is a natural antibiotic.
Omega 3 Salmon Oil 500mg twice daily. Good for immune system and heart health and helps to balance hormones. Many fish oils contain shellfish to which some people are allergic. For this reason, Salmon Oil might be the better choice.
Milk Thistle 175mg twice daily for 3 months, then 1 per day for liver health. To be taken with Probiotic Acidophilus twice daily for 3 months, then 1 per day for intestine well-being.
Milk Thistle and Acidophilus remove toxins from the body and help retard yeast build up
Wish me luck! I'll definitely post an update tomorrow from my appointment at this Fibromyalgia clinic. It's about 2 hrs away so I'll be gone all day but will get an update out as soon as I can once I return. Hopefully there will be some good news and hope for this journey to finally take a turn towards a healthier me!
Subscribe to:
Posts (Atom)