As mentioned before, I had a full-body thermogram done earlier this week. The results, with thumbnails of each scan, came in today's mail. The thermography report revealed no suspicious (as in cancerous) areas! \o/
That's not to say that I don't have a lot going on, however! There were several inflamed areas, many likely having to do with my dermatomyositis, interstitial lung disease, or Raynaud's phenomenon. The only one that is likely not a result of those was some inflammation in the upper abdominal region.....I'm wondering if that's not stress on the liver by the medication I'm on???
I hope to take this information to the doctor and see what he says....my rheumatologist isn't an "alternative option" kinda guy. But I've tried his way for 6 years.....now it's time to explore some other ways. I did learn of an D.O. within our network that does have alternative leanings......I hope to call him next week.
A couple things I forgot to post about on the previous thermography entry......
When you call about thermography, not only ask about the manufacturer of their equipment but also ask who interprets the scans. The lady I went to sends the images to be read by doctors at Duke University, but she told us about another local themographer who interprets his own even though he was never trained to! Your doctor is more likely to appreciate the findings if read by a reputable organization.
The other thing I forgot to write about was that you should have a second scan done about 3 months after the first. This will provide a baseline for you, tell you what your norm is. After that, they are recommended to be done yearly to keep an eye out for changes.
The UBCF that I mentioned in the previous entry has been also paying for the second, follow-up breast screening.
I just had my first thermography earlier this week. I have been considering it for a year or two.
Thermography is a non-invasive, thermal imagining scan that does not use radiation. It can be used for early detection, either in place of a mammogram or in addition to.
It has been FDA approved for over 25 years and is finally getting some well-deserved recognition. It can detect cancer up to 10 years sooner than mammography!!! And the procedure is not painful at all. It is used in hospitals around the world and has become a popular choice for many hospitals in the Western United States. Where I live, it seems we still need to educate our doctors!
I recently heard a speaker. She is a two-time breast cancer survivor. Both times that she had cancer, she had both mammograms and ultrasounds and neither showed a thing.....she was pronounced "fine" because they couldn't see any cancer. (She knew with her symptoms that she quite obviously was NOT fine!!!) Thermographies showed the cancer immediately, both times. The second time she had cancer, it was contained in a sack......until the doctor required a mammogram, which broke the sack , and then the cancer spread to 8 of her lymphs.
Thermography takes a picture of the "heat" (or lack of) of your body.
Thermography is not just used for the breasts, but the entire body. Thermography is not overly good at showing uterine/ovarian or prostate cancer due to their location (deep and midst an area that is already usually very warm). It's also not all that great at scanning the brain. Hopefully, as they improve equipment, these areas will also show up better.
Themography reveals vascular and nerve problems (or potential problems if left alone). So, thermography is not only used for cancer, but also to detect fibromyalgia, immune dysfunction, diverticulitis, Crohn's, arthritis, sinus problems, carpal tunnel, and more.
As with all equipment, not all thermography machines are the same. Meditherm units are supposed to be very accurate. The images are interpreted by doctors at Duke University and you are sent the results within a week or so. If something suspicious is revealed, you can then take these pictures to the physician of your choice and you can proceed as desired with the information.
Most insurances around my area do not cover the scan for breast screenings. However, the United Breast Cancer Foundation has been re-imbursing for the breast screenings! You have to fill out "paperwork" on the website at United Breast Cancer Foundation and once you get approval, you schedule a screening. After the screening, you complete the process for re-imbursement.
Around here, a thermogram for just the breast area is $150. For half of the body, it is $250 and for the whole body, $325. Each exam takes half an hour to a full hour to complete, depending on which one you have done. If you can stand and sit on a stool, you can do this.....there is no painful squishing and pulling or anything!!!
White is very hot/abnormal, reds and oranges are the next, down to the greens and the blues. Lack of heat in some areas is just as telling as white in others.
I opted to have the full body scan done. I'm anxiously awaiting my results. I expect them next week.
Disclaimer: This post is not meant to give medical advice....just wanted women to know about another possible option and how they might get reimbursed for the breast screenings if their insurance does not cover it.
Many are shocked when they learn that I have a chronic illness...three of them actually. I don't particularly look ill. That's where the phrase "invisible illness" comes in. Each year in September, for Invisible Illness Week, bloggers everywhere are posting about their life with an invisible illness--a chronic condition that affects their life every day.
If you think you don't know anyone with a chronic illness, think again. Almost 1 in 2 Americans live with a chronic condition--it just may not be one you can obviously see!
I have Dermatomyositis, an autoimmune disease that affects the muscles and the skin. At various times, I've had sore or weak muscles all over and painful rashes on my face. I cannot be out in the sun much, as that will lead to a flare in the illness. So, I've learned to wear sunscreen almost daily and to wear a hat when I know I'm going to be in the sun a lot. I'm hoping that we'll be able to get disease under control and I can stop taking the nasty medications for it. One night each week, I take 6-8 pills and then try and fall asleep before the nausea hits. The following day, I'm generally tired. The second day after taking them, I generally get a headache. (Hey, at least it's predictable!)
I also have Interstitial Lung Disease, another autoimmune disease that makes my lungs weak and susceptible. At the moment this is under control (in remission) and I'm taking no medications for it.
And I also have Raynaud's Phenomenon, which seems to go along with autoimmune problems. My body doesn't always regulate temperature very well. My hands and feet have poor circulation particularly, and my toes have begun to get numb places due the damage to the nerves.
So as bad all that sounds, I'm doing really well!! \o/ God is so good!!! He is faithful and merciful. I've come a long way since first being diagnosed (see my post for last year's Invisible Illness Week).
While I wake up stiff and sore each morning, I'm able to walk around and do normal things without breathing difficulties. I'm able to lift and carry most things. I can hug and laugh and love on my family. I can teach and we can go on field trips. I am able to live each day! I now find joy in even the smallest things.....a hug, a sunrise/sunset, a rainbow, a butterfly, etc. I no longer take things for granted, especially such things as health and the ability to walk and breathe. I can do all this because of my God.....He is my strength, my resting place.
This will stay at the top until Invisible Illness Week is over on September 14.
Scroll down to view other posts,
including my post on my Invisible Illness.
Statistics show that nearly 1 in 2 people in the USA have a chronic condition and that 96% of it is invisible.
So what is an invisible illness? All kinds of conditions! Multiple sclerosis, fibromyalgia, chronic fatigue syndrome, diabetes, arthritis, heart disease, autism, migraines, chronic back pain, cancer, endometriosis, eating disorders, and yes... mental illness and depression. There is no sign of the illness existing, nor (at least not until the debilitating stages) the use of an assistive device like a cane or a wheelchair.
National Invisible Chronic Illness Awareness Week, September 8-14, 2008, is an outreach to increase awareness that living with an invisible illness can be emotional challenge—as well as physical—and that more people than we would imagine are suffering silently.
Respondents answered the survey at www.invisibleillness.com and reported the following other annoying comments people tend to make:
“Your illness is caused by stress.” (14.22%)
“If you stopped thinking about it and went back to work…” (12.42%)
“You can’t be in that much pain. Maybe you just want attention.” (10.95%)
“Just pray harder.” (9.15%)
Believe me, we wish it were that easy.
Join me in prayer for the 133 million sufferers of invisible illness in America and the countless others worldwide. Our strength, our hope is Jesus Christ the son of the living One True God.
Are you a sufferer of an invisible illness? So am I. I have dermatomyositis, interstitial lung disease, and Raynaud's Phenomenon. Leave me a comment and let me know how I can pray for you!
You may not want to read such a long and personal post, so you have my permission to skip this one.
But it's Invisible Illness week and I am posting this more for me (to remember just what it was like in those early days) and for anyone who stumbles across this post who also lives with an invisible illness....may it encourage to you to know there are others like you "out there" and who truly understand your walk.
This has been my fourth year of living with the diagnosis of two autoimmune diseases. One is called dermatomyositis. Derm relates to the skin, myo relates to the muscles, and the itis means inflammation. The other disease is interstitial lung disease. In both cases, my body's immune system has gone haywire in the sense that it won't shut off when it's supposed to and so it starts attacking various parts of the body that it shouldn't. Prior to being diagnosed I thought an autoimmune disease was one where the immune system wasn't working when it should.
Anyway, I'm creating this entry as a reminder...for myself. You see, God has brought me so far along the journey that I quite often forget just what it was like those first several months. And it's also written to be an encouragement to anyone who stumbles up on it and is also living with an Invisible Illness of their own. So if you'd rather just skip reading this entry, that's fine. It's probably going to be a long one anyway! LOL.
So where was the beginning? I'm not really sure. I remember in January or February of 2004, I would wake up so stiff. Hobbling around a bit and opening and closing my hands would work the stiffness out of my hands, legs, and feet after a bit. I started taking MSM with chondroitin. It worked very well for a month or so, then the stiffness seemed much worse. I noticed too that when I sat for any real length of time that I stiffened up then too. I also noticed that the knuckles on my hands seemed red and I had faint red streaks from the bottom knuckles up to the middle knuckles on almost every finger. I just lived with it at the point, not making any appointments to see the doctor, trying to hide it from the family.
That July, I scheduled to have my wisdom teeth removed. My dentist and been telling me for years to have it done, that I didn't have room for them. But I'd never had a problem with them, so why bother. Then I got to thinking about the fact that I used to have a gap between my two front teeth and that gap was now gone. Yea! It looked much nicer now! But I wondered if the wisdom teeth made my teeth closer together and would they continue to do so, eventually making my teeth crooked? I had the wisdom teeth removed. I had an awful time with the nerve pain for a couple weeks! It hurt so bad. My nerves were still sending signals to the missing teeth and nothing really helped except the numbing gel the doctor gave me.
Prior to the wisdom teeth removal, my muscles were starting to become sore and by late summer they were extremely painful each morning. I felt as if my leg muscles weren't quite long enough anymore and I needed to stretch them out before walking. Each morning, I would hobble out of bed and down the steps and into the bathroom. It hurt so bad to walk. Within a half hour or so, I'd be OK except the muscles were still sore.
On top of this, a week after the wisdom teeth removal, I started having eye problems. My eyes began pulling outward! I thought the problem was connected to the teeth removal and I went back to the eye doctor, thinking it must be the pain medicine and/or the nerve gel he gave me, but he had no clue. I went to my optometrist and he referred me to a specialist.
At this point, I began wondering if the extremely painful muscles and the eye problems were related....after all, eyes have muscles. I thought surely I must have some kind of autoimmune disease (AI). My mom has two (Sjogren's and interstitial lung disease) and I knew there was a higher occurance in families with at least one person having an AI disease. Researching the Internet did not help--first off, many of the AIs have very similar symptoms, and second, the Internet net is quite a scary place when researching anything medical. Seems like you find mostly info on the horror stories of medical problems!
I finally made an appointment with my family doctor. He agreed--it was very likely an autoimmune problem. Bloodwork confirmed something was going on. He referred me to Mom's rheumatologist, where I got more blood work done.
I also went to the eye specialist. After determining that I did NOT have a particular autoimmune disorder that involves the eyes, he said that this was a latent problem that affects many children....lazy eye. That if anyone in my family had a lazy eye, then that was definitely the problem. And when I asked if it could be connected to all the other muscle problems I was having, he gave an adamant "No." He completely dismissed that there could be *any* connection! He wanted to do eye surgery--to cut the stronger muscles of the eye thereby eliminating its pulling the eye outward. I said I'd get back to him. I left thinking....Yeah, right, you can't tell me that I suddenly develop an eye muscle problem and it's not related to all the other muscle problems I was having! There was no way he was going to cut perfectly good muscles! (I am especially happy that I did not have the surgery, because about a year after that, I was only still having problems with one eye and was now turning INward!!!)
By this time, every muscle in my body hurt pretty much constantly. Other muscles became affected, including the esophagus, the intestines. I tired very easily. My energy was zapped quickly.
One day, Columbus Day, we went out to supper at Ponderosa. When we left, I felt like I ate way too much. I felt so full I couldn't catch my breath. After that I often felt like I just wasn't getting enough air. I mentioned it to the rheumy.
Then one day, as I sat in a cold room waiting for the doctor to come in, I noticed my hands were a sort of purplish-blue and white...my legs too! I remembered reading about Raynaud's Phenomenon and asked the doctor to confirm it when he came in. It's sometimes called the "All American" disease because the hands are blue and white from poor circulation and then when the blood rushes back into the veins the hands turn red. Red, white, and blue....hey, I'm patriotic.
Anyway, more tests and more blood work was done and it was narrowed down to one of two autoimmune diseases that affect muscles. One more blood test to determine which.
At last I had an official diagnosis.......dermatomyositis. Then came the kicker, the one I wasn't expecting....I also had interstitial lung disease. The same lung disease that my Mom has. I'd had no symptoms of it until the day I went out to supper that one day.
When Ritch and I went in to receive my diagnosis, I was determined I wasn't going to take medication for it. I'd researched enough to know that most AIs are treated similarly and that I'd very likely be on the same drugs Mom was. I knew how it affected her body, her eyes, her liver, etc. I felt surely I could some more natural, herbal route. That changed with one sentence from the doctor......."If you don't, you'll be dead in two years." The lung disease was the culprit.
I had a 4 year old and a newly turned 7 year old.......how could I not take the prescriptions? And so I started the traditional treatment of steroids and cancer medications.
As the saying goes, things get worse before they get better. That certainly held true in this case. Before things started to get better some 4 months later, things got a whole lot worse.
I lost 40 lbs. This was a good thing, since I was 40 lbs. overweight, but I wasn't even trying to lose, so it was quite scary. The doctor suspected cancer, since with DM there is higher chance of developing some kind of cancer. He'd never heard of anyone on high doses of prednisone not eating themselves out of house and home and gaining oodles of weight. He never found cancer. \o/ God! Must have just been the stress and just my body's reaction to the meds.
I also lost a ton of hair. Never to the point of needing a wig, but boy, I wondered. I probably lost at least half. I never understood when my hairdresser said I had a lot of hair! To me it was thin. Yes, I had fine hair, but there was a lot of it....most people really didn't notice that I'd lost so much hair, but I did. It came out by the handfulls, daily. I've since, with the help of Nioxin shampoo, regrown much of it.
Also during that time, I often choked on foods or drinks due to the DM affecting the epiglottis and esophagus muscles. I hated drinking anything at that time--I became anxious prior to taking a drink, which usually made it worse.
All my muscles continued to grow weaker. I could barely lift my head of wet hair up out of the bathtub and I eventually had to give up baths altogether as I didn't have the strength to get out of it once I just kinda fell in. I was exhausted by the time I got out of the shower. Lifting my arms up to wash my hair and then to dry and comb it out was soooo tiring! I had to rest in between. Walking across the house wore me out. Taking a gallon jug of milk out of the fridge, it took all I had to get it to the counter that was only about 3 feet away. At bedtime, I would stand at the bottom of the steps and say "OK, Lord, you're going to have to get me up these things!" I never knew 13 steps could be so much! If I got up in the night to get to the restroom, I didn't have the strength to do the steps again and I'd spend the rest of the night in the chair or on the couch. I got to the point where I didn't even turn over it bed unless I absolutely couldn't stand that position any longer....it took too much effort to turn over. Anytime I'd worked my leg or arm muscles to the point of exhaustion, which happened quickly, they would tremor.
Schooling slowed to a crawl. Most of my days were spent on the couch. But I thanked God that I had found, long before this, a curriculum that could be done from a couch! From almost the beginning of our homeschooling journey, I used an awesome literature-based curriculum called Five in a Row. When I first read about it, I think I fell in love! I knew--without even yet seeing it--that it was a perfect match. It did what we had been doing all along--reading to our children and then discussing the story. I went full tilt, hook, line, and sinker into it.......I used a Buy-it-now option on E-bay and purchased a package deal that included the first three manuals and many of the books used in the program. Yes, FIAR can be done from the couch by a mom could barely do anything! I had to struggle to get through the reading of the book (I'd become winded from reading) but it can be done!
Well, I think that's about it....what I remember from that first six months or so. Now, I wear sunscreen a lot and, in the summer, a dreaded hat (I hate hats!) and try to listen to my body when it's tired. I've been off the prednisone several months now and hope to be off the last nasty medicine within the coming year.
I thank God \o/ that He was my strength during this time. I am thankful too for the support of my entire family. And my dear friends from my homeschool co-op were such a blessing, not only for their prayers but also for bringing us meals three times a week during the worst three months. And I'd be remiss if I didn't thank my church for their prayers and encouraging cards. (((hugs))) to each of you.... I thank my God every time I remember you. (Phil 1:3).
"Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong." (2 Corinthians 12:10)
"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort; who comforts us in all our affliction so that we may be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ." (2 Corinthians 1:3-5)
One thing I've learned since living with a chronic illness is the need to educate first yourself and second your doctor. Many of these diseases are rare and doctors are inexperienced with them. I think most of us would say that we read all we can about our illnesses. Here are some auto-immune related items that I've found helpful or interesting.
Here is an interesting video, mostly concerning MS and childhood diabetes, that does a great job of explaining how autoimmune diseases (in general) work. It is 45 minutes in length, but very informative. He discusses some experimental treatments that really offer some very promising hope. I recommend those who do not have MS or childhood diabetes to also watch this, as he mentions many other T-cell autoimmune diseases, such as Rheumatoid Arthritis, Crohn's, Ulcerative Colitis, etc.
Have you read an interesting book or found something on the Internet? Leave a comment.
Nearly 1 out of 2 people suffer an "invisible" illness, an illness that you may not be able to see just by looking at the person. On the outside, we may not look ill, but we may struggle each day just to get out of bed and live a somewhat normal life.
Today begins National Invisible Chronic Illness Awareness Week.
I, along with several other homeschooling moms, are blogging about our invisible illnesses this week. If you are, leave a comment below with a link to your blog, so that others might visit your page.
Other places........
I started a message board called Doing it Anyway, which is for moms who have (or whose spouse has) a chronic illness but who still choose to homeschool.
Another great place is Rest Ministries, which sponsors this weeks' Invisible Illness Week. Their Sunroom provides Christian support for living with a chronic illness.
The store at Rest Ministries has many resources for your chronic illness support group or to help start one. They also have devotionals written by folks who have truly been there! The founder of Rest Ministries, who is an author of some of the books on the site, suffers from chronic illnesses. They also have books for those who are caregivers for or who have a loved one with a chronic illness.
Jen has a listing of other homeschooling moms who continue to homeschool, despite their invisible illness. You can see their faces, read their names, learn what illness they have, as well as pray for them on Jen's Prayer page. She'll add you if you let her know.
Hope this helps bring awareness to the many invisible illnesses, as well as provide some places to visit for those who want to learn more or who may be looking for support of their own invisible illness. --Celia :o)
It's TMA's 15th anniversary and Steve is trying to raise $15,000 for myositis research. Read his story here. And if you feel led, please donate a bit for myositis research. If you go to his website, there's a link to donate through TMA. Myositis has been getting some much needed coverage--Oprah, Ellen, the New York Times.
For those who don't already know, I have dermatomyositis. I wrote my story a couple months ago, I guess I'll finally publish it here.
This is my fourth year of living with the diagnosis of two autoimmune diseases. One is called dermatomyositis. Derm relates to the skin, myo relates to the muscles, and the itis means inflammation. The other disease is interstitial lung disease. In both cases, my body's immune system has gone haywire in the sense that it won't shut off when it's supposed to and so it starts attacking various parts of the body that it shouldn't. Prior to being diagnosed I thought an autoimmune disease was one where the immune system wasn't working when it should.
Anyway, I'm creating this entry as a reminder...for myself. You see, God has brought me so far along the journey that I quite often forget just what it was like those first several months. So if you'd rather just skip reading this entry, that's fine....as I said, this one's for me. It's probably going to be a long one anyway!
So where was the beginning? I'm not really sure. I remember in January or February of 2004, I would wake up so stiff. Hobbling around a bit and opening and closing my hands would work it out. I started taking MSM with chondroitin. It worked very well for a month or so, then the stiffness seemed much worse. I noticed too that when I sat for any real length of time that I stiffened up then too. I also noticed that the knuckles on my hands seemed red and I had faint red streaks from the bottom knuckles up to the middle knuckles on almost every finger. I just lived with it at the point, not making any appointments to see the doctor, trying to hide it from the family.
That July, I scheduled to have my wisdom teeth removed. My dentist and been telling me for years to have it done, that I didn't have room for them. But I'd never had a problem with them, so why bother. Then I got to thinking about the fact that I used to have a gap between my two front teeth and that gap was now gone. Yea! It looked much nicer now! But I wondered if the wisdom teeth made my teeth closer together and would they continue to do so, eventually making my teeth crooked? I had the wisdom teeth removed. I had an awful time with the nerve pain for a couple weeks! It hurt so bad. My nerves were still sending signals to the missing teeth and nothing really helped except the numbing gel the doctor gave me.
Prior to the wisdom teeth removal, my muscles were starting to become sore and by late summer they were extremely painful each morning. I felt as if my leg muscles weren't quite long enough anymore and I needed to stretch them out before walking. Each morning, I would hobble out of bed and down the steps and into the bathroom. It hurt so bad to walk. Within a half hour or so, I'd be OK except the muscles were still sore.
On top of this, a week after the wisdom teeth removal, I started having eye problems. My eyes began pulling outward! I thought the problem was connected to the teeth removal and I went back to the eye doctor, thinking it must be the pain medicine and/or the nerve gel he gave me, but he had no clue. I went to my optometrist and he referred me to a specialist.
At this point, I began wondering if the extremely painful muscles and the eye problems were related....after all, eyes have muscles. I thought surely I must have some kind of autoimmune disease. My mom has two (Sjogren's and interstitial lung disease) and I knew there was a higher occurance in families with at least one person having an AI disease. Researching the Internet did not help--first off, many of the AIs have very similar symptoms, and second, the Internet net is quite a scary place when researching anything medical. Seems like you find mostly info on the horror stories of medical problems!
I finally made an appointment with my family doctor. He agreed--it was very likely an autoimmune problem. Bloodwork confirmed something was going on. He referred me to Mom's rheumatologist, where I got more blood work done.
I also went to the eye specialist. After determining that I did NOT have a particular autoimmune disorder that involves the eyes, he said that this was a latent problem that affects many children, lazy eye. That if anyone in my family had a lazy eye, then that was definitely the problem. And when I asked if it could be connected to all the other muscle problems I was having, he gave an adamant "No." He completely dismissed that there could be *any* connection! He wanted to do eye surgery--to cut the stronger muscles of the eye thereby eliminating its pulling the eye outward. I said I'd get back to him. I left thinking....Yeah, right, you can't tell me that I suddenly develop an eye muscle problem and it's not related to all the other muscle problems I was having! There was no way he was going to cut perfectly good muscles! (I am especially happy that I did not have the surgery, because about a year after that, I was only still having problems with one eye and was turning INward!!!
By this time, every muscle in my body hurt pretty much constantly. Other muscles became affected, including the esophagus, the intestines. I tired very easily. My energy was zapped quickly.
One day, Columbus Day, we went out to supper at Ponderosa. When we left, I felt like I ate way too much. I felt so full I couldn't catch my breath. After that I often felt like I just wasn't getting enough air. I mentioned it to the rheumy.
More tests and more blood work was done and it was narrowed down to one of two autoimmune diseases that affect muscles. One more blood test to determine which.
At last I had an official diagnosis.......dermatomyositis. Then came the kicker, the one I wasn't expecting....I also had interstitial lung disease. The same lung disease that my Mom has. I'd had no symptoms of it until the day I went out to supper that one day.
When Ritch and I went in to receive my diagnosis, I was determined I wasn't going to take medication for it. I'd researched enough to know that most AIs are treated similarly and that I'd very likely be on the same drugs Mom was. I knew how it affected her body, her eyes, her liver, etc. I felt surely I could some more natural, herbal route. That changed with one sentence from the doctor......."If you don't, you'll be dead in two years." The lung disease was the culprit.
I had a 4 year old and a newly turned 7 year old.......how could I not take the prescriptions? And so I started the traditional treatment of steroids and cancer medications.
As the saying goes, things get worse before they get better. That certainly held true in this case. Before things started to get better some 4 months later, things got a whole lot worse.
I lost 40 lbs. This was a good thing, since I was 40 lbs. overweight, but I wasn't even trying to lose, so it was quite scary. The doctor suspected cancer, since with DM there is higher chance of developing some kind of cancer. He'd never heard of anyone on high doses of prednisone not eating themselves out of house and home and gaining oodles of weight. He never found cancer. \o/ God! Must have just been the stress of the diagnosis and/or just my body's reaction to the meds.
I also lost a ton of hair. Never to the point of needing a wig, but boy, I wondered. I probably lost at least half. I never understood when my hairdresser said I had a lot of hair! To me it was thin. Well, I found out that yes, I had fine hair, but there really was a lot of it....most people really didn't notice that I'd lost so much hair, but I did. It came out by the handfuls, daily. I've since, with the help of Nioxin shampoo, regrown some of it.
Also during that time, I often choked on foods or drinks due to the DM affecting the epiglottis and esophagus muscles. I hated drinking anything at that time--I became anxious prior to taking a drink, which usually made it worse.
All my muscles continued to grow weaker. I could barely lift my head of wet hair up out of the bathtub and I eventually had to give up bath's altogether as I didn't have the strength to get out of it once I just kinda fell in. I was exhausted by the time I got out of the shower. Lifting my arms up to wash my hair and then to dry and comb it out was soooo tiring! I had to rest in between. Walking across the house wore me out. Taking a gallon jug of milk out of the fridge, it took all I had to get it to the counter that was only about 3 feet away. At bedtime, I would stand at the bottom of the steps and say "OK, Lord, you're going to have to get me up these things!" I never knew 13 steps could be so much! If I got up in the night to get to the restroom, I didn't have the strength to do the steps again and I'd spend the rest of the night in the chair or on the couch. I got to the point where I didn't even turn over it bed unless I absolutely couldn't stand that position any longer....it took too much effort to turn over. Anytime I'd worked my leg or arm muscles to the point of exhaustion, which happened quickly, they would tremor.
Schooling slowed to a crawl. Most of my days were spent on the couch. But I thanked God that I had found, long before this, a curriculum that could be done from a couch! From almost the beginning of our homeschooling journey, I used an awesome literature-based curriculum called Five in a Row. When I first read about it, I think I fell in love! At the very least, I knew--without yet seeing it--that it was a perfect match. It did what we had been doing all along--reading to our children and then discussing the story. I went full tilt, hook, line, and sinker into it.......I used a Buy-it-now option on ebay and purchased a package deal that included the first three manuals and many of the books used in the program. When I became ill, it was a God-send, a true blessing! Yes, FIAR really can be done from the couch by a mom could barely do anything!
Well, I think that's about it. What I remember from that first six months or so. Now, I wear sunscreen a lot and, in the summer, a dreaded hat (I hate hats!) and try to listen to my body when it's tired. I've been off the prednisone for several months now and hope to someday be off this last nasty medication I'm taking.
It was brought to my attention (thank you, Aunt Nita!) that I need to update on Mom!
Mom's lung disease is NOT active afterall! She's had numerous tests and x-rays and they show that her lungs have "no significant change." \o/
Her oxygen in-take has not been so great. Using the oxygen whenever she walks has made an amazing difference!!! She's not running marathons, but she--with oxygen--can at least move around the house without wheezing!
Also, she had two sleep studies done and she does have sleep apnea. Only moderate though. She stops breathing about 50 times per night. She now has a CPAP to wear when she sleeps. This will force room air into her lungs when her lung muscles relax and close-off the air passage.
Dust if you must, but there's not much time, with rivers to swim and mountains to climb, music to hear and books to read, friends to cherish and life to lead.
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I've finally bitten the bullet and set up a blog! I'd like keep better track of what we do. I never seem to get a diary going, so we'll try this!
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I'm Mom to two beautiful girls, one is 12, the other is 9. We live in the foothills of the Appalachians. We call our homeschool, Anchored in Christ Academy. We love to use literature-based unit studies, mostly from HomeSchoolShare.com. In the past, we have also loved Five in a Row. We have just begun our 7th year of homeschooling.
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Your doctor is more likely to appreciate the findings if read by a reputable organization.
The following day, I'm generally tired. The second day after taking them, I generally get a headache. (Hey, at least it's predictable!)
