So it's been a couple weeks since my last update. I hope you all had a great Christmas and are gearing up for your New Years celebrations. Whatever you do, please be safe and use common sense. People can get crazy on New Years Eve, don't let them find you and drag you into their craziness. Have fun but be safe about it!
We are going to be in Estes Park for New Years. Our friends, who are also our neighbors, invited us to spend the weekend with them there. They have been there all week. They also invited two other families so it will be 11 of us in a house on the mountain - could be fun, could be crazy - could be CRAZY FUN! Either way, we are looking forward to getting away for a few days to relax and enjoy friends company. All the kids are friends and all the adults are friends so it should be a really nice little getaway. We are expecting snow today so I am hoping it doesn't interfere with our travel plans. The location is only about 2hrs away so it should be ok getting there. We might have to take the truck if the snow is too bad.
I've been doing pretty good with my Physical Therapy. Today is my last day that I go in and then I will continue to do the stretches and exercises they have shown me that will help me with my stiffness and overall pain in various areas. Mainly I have pain in my right shoulder area and down the right side of my back. My left side is ok for the most part but still a bit stiff. It seems that the things they have had me doing work so I just need to keep it up at home. I still wake up everyday with numb fingers which is extremely annoying. It has been taking about an hour for that to go away then I'm fine the rest of the day. There is a good knot in my back on the right side that we believe is the contributor to the numbness in the morning - at physical therapy we tested my right hand for carpel tunnel and determined I do not have that since the numbness encompasses more fingers than carpel tunnel does.
Headaches have been few over the past couple weeks which has been nice - I would say I have had about 3, one of which I went to bed with and the others were mild. So at least that is getting better!
Over Christmas we got a Wii along with Wii fit. I plan on using this to assist with daily exercises as I get going. My mom and I are also going to walk 1 mile on days that are not too cold and possibly start "the biggest loser" on the Wii. That sounds fun and will be a good motivator for both of us. I need to lose 20lbs and wouldn't mind losing 30 - but 20 for sure.
I received a juice machine for Christmas too. This is going to be a great help to my weight loss and increasing my vegetable and fruit intake. I've already been using it and creating all kinds of fun concoctions that are pretty tasty. The kids are even trying new things and enjoying it as is Glenn. I figure if I can get any extra goodness into them along the way I will! I would really like to find the right combination of foods, juices and vitamins that will help me feel better consistently along with giving me more energy. Eventually I would LOVE to get off the medications I've been on although I'm not sure that's going to happen considering that one of them is also used to treat Fibromyalgia - in fact, the Dr thinks one reason I haven't had too much trouble over the years up until recently is because of this particular medication I've been taking. So we'll see - if I can get the right things in my body to take the place of the meds then that will be great!
So along with my updates I will be posting juice recipes as well. Feel free to try them if you want and let me know what you think. If you have any fun, yummy recipes you want to share, feel free to do that as well!
Tonight I go in for my sleep study. Part of treating my fibromyalgia is also getting my chronic fatigue under control and seeing how bad my sleep apnea is - I might have to start sleeping with the machine used to treat the apnea depending on what the results of tonight's sleep study come back as. The one thing I'm not looking forward to is the cost of the machine. Hopefully it's less than I am thinking it will be. Wish me luck! I go in tonight at 9pm and they said I will be out of there by 6am - that means getting up EARLY, way earlier than I ever do......(do you feel sorry for me yet?)
I hope you have a GREAT New Years Eve! It has started snowing since I started this update so I guess we are in for a snowy cold day as the forecast suggested. I hate it when they are right!
I will leave you with a good juice recipe we made this morning:
1/2 a small pineapple
1 pint strawberries
10 blackberries
1/2 a lime
1/2 an orange
1 celery rib with greens at top if still there
Push through juicer and enjoy!
Until next time ... Happy New Year - see you in 2011!
Thursday, December 30, 2010
Monday, December 20, 2010
Not as bad as I anticipated
It took all I had in me to get to physical therapy today - not because I didn't feel well but because I was dreading it. I have done PT in the past, many years ago, and recall it not being a very pleasant experience...so I think that is what was making it hard on me. Anyway, I went and it wasn't bad. I talked with the PT for a while then he had me go through a series of stretches. I explained to him that due to my insurance deductible resetting on the 1st I would only be coming until then. With that, he is going to put me on a "fast track" to teach me everything I need and I'll do it at home after the 1st.
The program consists of stretching, endurance and strength exercises that normally would go over an 8 wk course of visits - we are condensing it into 7 visits. So I'll be going back two more times this week and 3 or 4 next week to learn the things I need to learn. I also brought home a print out of the exercises I'll need to do on a daily basis as well as a tracking sheet to help me make sure I am doing what needs to be done.
Today I was able to finish up my Christmas shopping after my appointment which is nice. There is one more thing I would like to get but I'm not sure if I can with the kids home constantly and questioning me at every move I make. The older they get, the harder it is the be sneaky at Christmas time - they are asking about the validity of "santa claus" but all I have to say in response is "If you believe, you receive" and leave it at that, lol
Today, aside from feeling tired I'm feeling ok - my right hand has been bothering me a lot but aside from that today was a pretty good day - I think I'm going to go to bed early tonight, not that it makes any difference in how I feel the next day, no matter how much sleep I get I'm always tired and unrested - that's the next thing to work on with the sleep study that I'm waiting to get scheduled for.
The program consists of stretching, endurance and strength exercises that normally would go over an 8 wk course of visits - we are condensing it into 7 visits. So I'll be going back two more times this week and 3 or 4 next week to learn the things I need to learn. I also brought home a print out of the exercises I'll need to do on a daily basis as well as a tracking sheet to help me make sure I am doing what needs to be done.
Today I was able to finish up my Christmas shopping after my appointment which is nice. There is one more thing I would like to get but I'm not sure if I can with the kids home constantly and questioning me at every move I make. The older they get, the harder it is the be sneaky at Christmas time - they are asking about the validity of "santa claus" but all I have to say in response is "If you believe, you receive" and leave it at that, lol
Today, aside from feeling tired I'm feeling ok - my right hand has been bothering me a lot but aside from that today was a pretty good day - I think I'm going to go to bed early tonight, not that it makes any difference in how I feel the next day, no matter how much sleep I get I'm always tired and unrested - that's the next thing to work on with the sleep study that I'm waiting to get scheduled for.
Saturday, December 18, 2010
My head is spinning
So it seems there a lot of people who think that this is no big deal - live in my body for a week and then tell me it's no big deal. I have heard everything from "that seems to be the diagnosis of the day" - "oh that's so common everyone seems to have it" - "that's what happens when you get older" - "at least your not dying" - "that's why Dr's tell you when they have no clue" and so on. REALLY? So many people have no compassion and the sad thing is that a lot of them are people who you would expect a little compassion from! I feel a bit alone in all this already and it's just the beginning. It feels like most people have the attitude of "get over it and deal". I guess I better get use to the feeling and lack of compassion for what lies ahead.
Since Tuesday I've been trying to digest everything. I have my first physical therapy appt on Monday at noon and plan on starting Yoga after the first of the year. A friend of mine is going to go with me as she has been wanting to go but hasn't wanted to do it alone - so this is a great excuse for her to start as well. There is a lot of information about this disorder that I've found it difficult to find GOOD information. I will keep searching and I'm sure I will find things, honestly I just don't have the desire to do it right now. With all this coming about right before Christmas I'm a bit stressed and overwhelmed with all I have on my list to do. Dr appointments, shopping, wrapping etc.....and to top it off my mom and I are not getting along right now which just adds to it all.
I've been noticing that the cold weather has been adding to my pain. I know there is a comment on here about the weather which I've been thinking about already. We'll have to see how bad it gets as moving out of the cold might just end up being what we need to do to help - although I'm not going to make that decision on a whim. If I can manage the pain with moist heat, exercise and pain meds then we might not have to. We'll see how that goes.
We have a busy weekend so I'll post an update after my first PT appointment - I'm looking forward to getting on with some exercises and learning about the things I can do to help ease the symptoms of this disorder - it seems each day something new pops up in a new place on my body.
Since Tuesday I've been trying to digest everything. I have my first physical therapy appt on Monday at noon and plan on starting Yoga after the first of the year. A friend of mine is going to go with me as she has been wanting to go but hasn't wanted to do it alone - so this is a great excuse for her to start as well. There is a lot of information about this disorder that I've found it difficult to find GOOD information. I will keep searching and I'm sure I will find things, honestly I just don't have the desire to do it right now. With all this coming about right before Christmas I'm a bit stressed and overwhelmed with all I have on my list to do. Dr appointments, shopping, wrapping etc.....and to top it off my mom and I are not getting along right now which just adds to it all.
I've been noticing that the cold weather has been adding to my pain. I know there is a comment on here about the weather which I've been thinking about already. We'll have to see how bad it gets as moving out of the cold might just end up being what we need to do to help - although I'm not going to make that decision on a whim. If I can manage the pain with moist heat, exercise and pain meds then we might not have to. We'll see how that goes.
We have a busy weekend so I'll post an update after my first PT appointment - I'm looking forward to getting on with some exercises and learning about the things I can do to help ease the symptoms of this disorder - it seems each day something new pops up in a new place on my body.
Tuesday, December 14, 2010
The mountain seems so big
We're back from Ohio and trying to stay sane - this month is zooming past so quickly. I just went out yesterday and did some Christmas shopping - sheesh - time is closing in! Sorry it's been so long since my last update, between being out of town for my uncle's funeral and other things it's been crazy. But I do have quite an update for you so keep on reading!
While we were in Ohio I kept playing phone tag with the Dr office - they were calling to give me results of the blood tests - finally on Thursday last week I was able to get in touch with them and just as I had thought, all my blood tests came back negative......not really a surprise but it still feels like that news has made the mountain I need to climb that much bigger and steeper. I feel like I just don't have the energy.
I have also have been back to see my OB - I went Friday after I returned from Ohio (the 10th) - we did the ultrasound and sure enough I do have a fibroid about the size of a tennis ball that is right at the top of my uterus causing it to be enlarged. She doesn't seem too worried about it.....but it's definitely something we'll keep watching and deal with if and when we need to. She did say it's pulling my uterus down so if it gets bigger there is a possibility I will need to have a hysterectomy in order to remove it. At this point we both felt that leaving it and just keeping our eye on it for now was the best thing to do.
My primary Dr did say he will refer me to a Rheumatologist OR Infectious Disease Dr for further testing. I did contact an Infectious Disease Dr last week and after talking to them I felt even more lost - the scheduler told me that once my Dr sends over the referral and my test results the Dr there would read everything and determine if they need to see me and why - that right there made me feel even more lost as with negative test results they are going to wonder why I feel I need to be seen by them - I just felt like they were going to decline the request. Being your own advocate sure does take a lot of energy and confidence!
After thinking about it over the weekend I decided to go with a Rheumatologist to start since I don't have any positive blood work for any infectious diseases and we might just have to start with looking at other things - I do think I have issues with my immune system so I'm thinking that might be the best place to start this whole thing.
Initially I know I had told several of you that I was convinced I have Lyme's Disease - now I'm not so certain...I definitely still feel there is something really wrong with me but I don't know what - all I can do is share my symptoms and hope that I will get with a Dr who can help me.......there are so many things that I COULD have and that match my symptoms it's all beginning to become very confusing in my head.
This past week my headaches have started to return. It's been coming slowly and I've been noticing that I'm waking up with a headache in the morning. Then midway through the day I'll have another and at night before bed. Up until today the headaches haven't been too bad, or specific like they have been before - however tonight I have the sharp pain in the front of my head again which is the same pain I had when I had the month long headache back in Sept/Oct - the one I described as a pin going in my head from the top and it's in one spot just over my right eye - it hurts.
I've also developed a new symptom of what I'm calling arthritis in my hand - more specifically my fingers on my right hand - my index finger and middle finger are so sore, achy and painful...out of the blue. This started on Sunday Dec 12.
Today I contacted the Rheumatologist and it just so happened they had an opening at 1:30 so I grabbed it. I went in and after a long exam and talking with the Dr he said I definitely have Fibromyalgia. Out of the 18 trigger points, I have all 18! I'm not sure how I feel about this new diagnosis just yet. I'm glad we are making progress but just a bit overwhelmed. He also has me going to get a sleep study done to see if I have sleep apnea (previously diagnosed) and if so to get me back on an apnea machine. He explained that without restful sleep I will never get better. He also is sending me to see a physical therapist to get me started on an exercise routine slowly. He explained that depending on how long I have had this that I will initially feel worse when I start to exercise and that a physical therapist who is familiar with the disease can help me gain momentum with exercise, starting me off slowly and building me up to a good routine but slowly so I don't overdo it.
He has prescribed me some pain meds that off the top of my head I don't recall the name, a step above tylenol but non addicting. He will see me again in a month to see how I am doing.
I am hopeful that all of this will lead me to feeling much better over time however it feels like it's going to be a slow process.
I have to go read about Fibromyalgia as I really don't know much about it and from what I do know, neither do the medical professionals! Figures!
While we were in Ohio I kept playing phone tag with the Dr office - they were calling to give me results of the blood tests - finally on Thursday last week I was able to get in touch with them and just as I had thought, all my blood tests came back negative......not really a surprise but it still feels like that news has made the mountain I need to climb that much bigger and steeper. I feel like I just don't have the energy.
I have also have been back to see my OB - I went Friday after I returned from Ohio (the 10th) - we did the ultrasound and sure enough I do have a fibroid about the size of a tennis ball that is right at the top of my uterus causing it to be enlarged. She doesn't seem too worried about it.....but it's definitely something we'll keep watching and deal with if and when we need to. She did say it's pulling my uterus down so if it gets bigger there is a possibility I will need to have a hysterectomy in order to remove it. At this point we both felt that leaving it and just keeping our eye on it for now was the best thing to do.
My primary Dr did say he will refer me to a Rheumatologist OR Infectious Disease Dr for further testing. I did contact an Infectious Disease Dr last week and after talking to them I felt even more lost - the scheduler told me that once my Dr sends over the referral and my test results the Dr there would read everything and determine if they need to see me and why - that right there made me feel even more lost as with negative test results they are going to wonder why I feel I need to be seen by them - I just felt like they were going to decline the request. Being your own advocate sure does take a lot of energy and confidence!
After thinking about it over the weekend I decided to go with a Rheumatologist to start since I don't have any positive blood work for any infectious diseases and we might just have to start with looking at other things - I do think I have issues with my immune system so I'm thinking that might be the best place to start this whole thing.
Initially I know I had told several of you that I was convinced I have Lyme's Disease - now I'm not so certain...I definitely still feel there is something really wrong with me but I don't know what - all I can do is share my symptoms and hope that I will get with a Dr who can help me.......there are so many things that I COULD have and that match my symptoms it's all beginning to become very confusing in my head.
This past week my headaches have started to return. It's been coming slowly and I've been noticing that I'm waking up with a headache in the morning. Then midway through the day I'll have another and at night before bed. Up until today the headaches haven't been too bad, or specific like they have been before - however tonight I have the sharp pain in the front of my head again which is the same pain I had when I had the month long headache back in Sept/Oct - the one I described as a pin going in my head from the top and it's in one spot just over my right eye - it hurts.
I've also developed a new symptom of what I'm calling arthritis in my hand - more specifically my fingers on my right hand - my index finger and middle finger are so sore, achy and painful...out of the blue. This started on Sunday Dec 12.
Today I contacted the Rheumatologist and it just so happened they had an opening at 1:30 so I grabbed it. I went in and after a long exam and talking with the Dr he said I definitely have Fibromyalgia. Out of the 18 trigger points, I have all 18! I'm not sure how I feel about this new diagnosis just yet. I'm glad we are making progress but just a bit overwhelmed. He also has me going to get a sleep study done to see if I have sleep apnea (previously diagnosed) and if so to get me back on an apnea machine. He explained that without restful sleep I will never get better. He also is sending me to see a physical therapist to get me started on an exercise routine slowly. He explained that depending on how long I have had this that I will initially feel worse when I start to exercise and that a physical therapist who is familiar with the disease can help me gain momentum with exercise, starting me off slowly and building me up to a good routine but slowly so I don't overdo it.
He has prescribed me some pain meds that off the top of my head I don't recall the name, a step above tylenol but non addicting. He will see me again in a month to see how I am doing.
I am hopeful that all of this will lead me to feeling much better over time however it feels like it's going to be a slow process.
I have to go read about Fibromyalgia as I really don't know much about it and from what I do know, neither do the medical professionals! Figures!
Thursday, December 2, 2010
Dr appointment update
So after my last posting on the 22nd a few things have taken place...
Nov 23rd I went to see my Dr as I was having terrible pain in my thigh on the left leg. This pain had been going on for several days so I was getting concerned that there was a possible blood clot. After checking me out, he sent me directly down to the ER to get an ultrasound of my leg to check for a blood clot. Thankfully that was all negative and I left there with the diagnosis of an Upper Respiratory Infection - according to the Dr viruses can cause pain in all kinds of ways.....but having ruled out anything serious they didn't seem too concerned with the intense pain I was having to endure - sent me home with some pain meds and suggested I just rest - rest, that's all I've been doing.
The pain in my leg slowly started getting less and less and is now pretty much gone, it's still there upon touching but not nearly as painful to the touch as it was and feels to be getting better daily. Whatever it is.....just another mystery.
On Tuesday Nov 30th I met with my primary care Dr again for the visit I've been waiting for. With my list of symptoms in hand and research notes as well as suggestions on what I think could be going on with me. As I was telling him about my findings and how I was feeling about it I felt that he thought I was crazy. It IS crazy really, but honestly I just need to get an answer, and this is what I told him. I told him that it won't hurt anything to just check and investigate. He did take some blood to check for Lyme Disease and a few other labs. He said once those come back he will most likely refer me to an Infectious disease Dr to dig deeper into whatever the blood work shows or doesn't show. So this appointment is "laying the groundwork" for what is to come. I told him that I don't think I'm "depressed" for any other reason than I've been sick for so long that in itself is depressing! But to take me off the meds for that is another story and not a bridge I want to cross just yet - the withdrawls are terrible and something I just don't want to deal with right now, so we'll leave well enough alone in regards to that.
I fear so badly that everything will come back negative and apparently "normal". I know that sounds weird because normally we would want all our tests to be negative right? But in light of all the suffering I've done medically, I just want to know what and why - so a positive test result would give me those answers as well as lead me down the path to treatment and feeling better. With any negative test result comes a brick wall in my world. So I fear those negatives at this point. I know, weird but hopefully it makes sense - in a weird way. I'm praying that we find something rather than nothing - I don't think I can take another "it's just how you are" comment.
The following day on Wednesday Dec. 1st I went to see my OB/GYN for an exam as I realized I had not had that type of exam since 2004 - opps. At that appointment while doing my internal exam she said my uterus is "enlarged" and asked me about any history of fibroids (this is a new Dr for me as my previous OB is no longer at this particular practice). I have never been diagnosed with fibroids so I will be going in on Dec 8th for an ultrasound to see if I do in fact have fibroids and to determine what the next step is. If it's not fibroids, we'll need to figure out what is making my uterus enlarged. During this exam she also was able to remove my IUD which was, to say the least, not real pleasant - we are holding off putting another one in until we know what the ultrasound shows us. The IUD has been a lifesaver for me in regards to my female issues (Pain and severe discomfort every month) as it completely eliminates that dreaded monthly visitor. But, until we know what's going on it'll have to wait.
I asked what is done about fibroids and she said usually nothing but it just depends on where they are growing, how big they are and how many there are - obviously if they are intrusive then they will need to be removed, if they are not then they can stay. So more to come on that next week.
Currently, as a result of my OB appt, I'm in some pain in the abdomen. Cramping and just blah. Hopefully that will get better real soon. In the meantime, Percocet is my friend.
I think I had neglected to mention in my other posts that I also have Thyroid nodules - both my thyroids are consumed with benign nodules that are monitored every 6mo or so - just wanted to add that to the list of things as I'm sure eventually that will come into play again as I go to see the endocrinologist for that exam in a few short months.
Oh the joy and roller coaster ride! Thanks for walking beside me on this journey as I go through the process to find out what is going on with me and hopefully in the end come out a much healthier person with answers on what has been causing me so much illness over the years.
Until next time....be safe and stay healthy!
Nov 23rd I went to see my Dr as I was having terrible pain in my thigh on the left leg. This pain had been going on for several days so I was getting concerned that there was a possible blood clot. After checking me out, he sent me directly down to the ER to get an ultrasound of my leg to check for a blood clot. Thankfully that was all negative and I left there with the diagnosis of an Upper Respiratory Infection - according to the Dr viruses can cause pain in all kinds of ways.....but having ruled out anything serious they didn't seem too concerned with the intense pain I was having to endure - sent me home with some pain meds and suggested I just rest - rest, that's all I've been doing.
The pain in my leg slowly started getting less and less and is now pretty much gone, it's still there upon touching but not nearly as painful to the touch as it was and feels to be getting better daily. Whatever it is.....just another mystery.
On Tuesday Nov 30th I met with my primary care Dr again for the visit I've been waiting for. With my list of symptoms in hand and research notes as well as suggestions on what I think could be going on with me. As I was telling him about my findings and how I was feeling about it I felt that he thought I was crazy. It IS crazy really, but honestly I just need to get an answer, and this is what I told him. I told him that it won't hurt anything to just check and investigate. He did take some blood to check for Lyme Disease and a few other labs. He said once those come back he will most likely refer me to an Infectious disease Dr to dig deeper into whatever the blood work shows or doesn't show. So this appointment is "laying the groundwork" for what is to come. I told him that I don't think I'm "depressed" for any other reason than I've been sick for so long that in itself is depressing! But to take me off the meds for that is another story and not a bridge I want to cross just yet - the withdrawls are terrible and something I just don't want to deal with right now, so we'll leave well enough alone in regards to that.
I fear so badly that everything will come back negative and apparently "normal". I know that sounds weird because normally we would want all our tests to be negative right? But in light of all the suffering I've done medically, I just want to know what and why - so a positive test result would give me those answers as well as lead me down the path to treatment and feeling better. With any negative test result comes a brick wall in my world. So I fear those negatives at this point. I know, weird but hopefully it makes sense - in a weird way. I'm praying that we find something rather than nothing - I don't think I can take another "it's just how you are" comment.
The following day on Wednesday Dec. 1st I went to see my OB/GYN for an exam as I realized I had not had that type of exam since 2004 - opps. At that appointment while doing my internal exam she said my uterus is "enlarged" and asked me about any history of fibroids (this is a new Dr for me as my previous OB is no longer at this particular practice). I have never been diagnosed with fibroids so I will be going in on Dec 8th for an ultrasound to see if I do in fact have fibroids and to determine what the next step is. If it's not fibroids, we'll need to figure out what is making my uterus enlarged. During this exam she also was able to remove my IUD which was, to say the least, not real pleasant - we are holding off putting another one in until we know what the ultrasound shows us. The IUD has been a lifesaver for me in regards to my female issues (Pain and severe discomfort every month) as it completely eliminates that dreaded monthly visitor. But, until we know what's going on it'll have to wait.
I asked what is done about fibroids and she said usually nothing but it just depends on where they are growing, how big they are and how many there are - obviously if they are intrusive then they will need to be removed, if they are not then they can stay. So more to come on that next week.
Currently, as a result of my OB appt, I'm in some pain in the abdomen. Cramping and just blah. Hopefully that will get better real soon. In the meantime, Percocet is my friend.
I think I had neglected to mention in my other posts that I also have Thyroid nodules - both my thyroids are consumed with benign nodules that are monitored every 6mo or so - just wanted to add that to the list of things as I'm sure eventually that will come into play again as I go to see the endocrinologist for that exam in a few short months.
Oh the joy and roller coaster ride! Thanks for walking beside me on this journey as I go through the process to find out what is going on with me and hopefully in the end come out a much healthier person with answers on what has been causing me so much illness over the years.
Until next time....be safe and stay healthy!
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