Well, life has been very interesting since I started this blog. I am still dealing with many of the same issues but finding ways to get around them. Is my health better? NO, but that's ok. I know it will get there eventually. I am hoping that starting up this blog again will help me in my desire to get healthy.
Changes: New baby! Last baby ;( But I need to for my health and the health of my family. God is good and has allowed us to have 7 amazing children!!
I guess my final diagnosis was severe FIbromyalgia which caused or at least exacerbated my IBS, gastro-peresis, severe GERD, and short Barretts Syndrome. Lots of fun stuff to deal with, but its all ok. I do believe some of it can be helped with diet change, more physical excersise, better rest, and less stress (ha ha ha).
I am hoping to go back to eating the Body by God way, by Dr. Ben Lerner. When my family ate this way I felt great!! I also lost 85 lbs! Sounds good to me. Which ever way the LORD leads I will keep track of it and my family's health changes! I think it will actually be neat to see what happens and what gets better!!
Signing off as I am tired! Church tomorrow!!
Saturday, January 4, 2014
Tuesday, August 14, 2012
Update with Gastro
Well, I had my appt with the gastro doc today. He decided to go ahead and put me down for gastroperisis AND IBS. Why? Well after taking in all the facts of all my symptoms and doing the endo and the colonoscopy, as well as all the other tests I have had...it is obvious to him. Not to mention all three gastros that I have seen agree sort of just puts it out there. To him is seems like I have had IBS in the lower for years, which is true because I was dx with it back before I was pregnant with Josiah who is almost 11 yrs old...what? 11 yrs old? How on earth did that happen!!!?? Oh sorry.... My current symptoms and testing show gastroperesis. YAH!!! umm.....not. He wants me to live (eat) as though I have GP and treat myself as though I do so I can see if it makes a difference.
Also the endo (Feb 2012) and colonoscopy (last week), both showed some things.
Short Barretts Esophogus (precancerous cells)
Polyups (also precancerous) they aren't always ,but mine where. They were also quite large. I had a colonoscopy done 2 years ago and had none.
From this point I will need a repeat of both in 3 years. If nothing worsened then we can push it out 5 years. We will see what happens from here.
My Lyrica was approved faster than I thought so I am on it. Is it helping? I don't know. The doc said to give it a month and see what happens. The pains in my arms are not better. Sleep, I still have to take a Flexeril before I go to bed. I lay down and BOOM my mind starts going and going and going......... Frustrating. I will actually lay in bed totally exhausted and ready to sleep until 4 am!!! Ugh.
So as of right now it is still a waiting game in some respects. In others it is life changing. They don't want me to change things too fast or we won't know what is helping and what isn't. Understandable.
Again, your prayers are always appreciated. Feel free to leave any comments or questions! I will answer as best as I can.
Also the endo (Feb 2012) and colonoscopy (last week), both showed some things.
Short Barretts Esophogus (precancerous cells)
Polyups (also precancerous) they aren't always ,but mine where. They were also quite large. I had a colonoscopy done 2 years ago and had none.
From this point I will need a repeat of both in 3 years. If nothing worsened then we can push it out 5 years. We will see what happens from here.
My Lyrica was approved faster than I thought so I am on it. Is it helping? I don't know. The doc said to give it a month and see what happens. The pains in my arms are not better. Sleep, I still have to take a Flexeril before I go to bed. I lay down and BOOM my mind starts going and going and going......... Frustrating. I will actually lay in bed totally exhausted and ready to sleep until 4 am!!! Ugh.
So as of right now it is still a waiting game in some respects. In others it is life changing. They don't want me to change things too fast or we won't know what is helping and what isn't. Understandable.
Again, your prayers are always appreciated. Feel free to leave any comments or questions! I will answer as best as I can.
Sunday, August 12, 2012
It's a Beautiful day
Everyday is beautiful. At least it should be. Even if the weather is not. The LORD tells us in his word that life is a gift. Yes, it is. Even if my mortal life on this earth is to be filled with pain, GI issues, headaches, and the like it can still be beautiful!
I have 6 beautiful children. I have one amazing hubby who loves me very much. My family is my biggest support group!! My oldest son is only 10 years old and has taken over most of breakfast and lunch cooking. He has been helping a lot with dinner as well. My twins who are 9 years old have started taking over the laundry. Older son and I still load washer and he switches it, but they get it and fold it and hang it all up. Then they have the two little boys help them put it all away. I truly feel blessed!
Physically, I feel lousy, but this is part of my life that I will have to accept and stop commenting on how terrible I feel. I started my Lyrica but honestly I don't feel a difference at all. I even took two pills. So I will see what the doctor wants to do. From what I was reading on the support group for Fibro, Lyrica only works for 50% of people. Also many have had terrible side effects. So hubby is watching me closely to make sure I don't develop them and if I do call the doc right away.
I have heard so much about Fibro not being real. I have also heard some say that a chiropractor, eating better, and exercise will cure it. For some people I am sure that works. For many though it doesn't. You can go back and read through my last post about what Fibro actually does. A person with fibro has an issue with the nerve sensory in their body. They feel too much, so it causes pain. Just simple things like my son poking me to get my attention feels like someone stabbed a knife into my arm. So it is important to remember that every person with fibro is different and needs treatment different than another person with it. It affects each person differently.
What I do know is that my GOD said he will be my guide. He told me that he will supply my need. To many people it may seem crazy to not go searching for a cure or a relief, but honestly that is not what the LORD put me on this earth to do. I can't spend all my time researching for things to help with this. I just can't. Not to mention trying this and trying that is expensive. So for now I am putting myself in the hands of my doctors. This is what my husband and I feel we should do. Yes I have praying and sought the LORD. If he leads me to other ways I will look into them. For now we truly believe that my doctor knows what he is doing and wants to help me live a full life without pain if possible. If that means trying a couple meds to see which fits, I will do it. I have 6 children to tend to, a hubby that needs me, a house that needs me, and a church that needs me. If meds are what it takes to get me to be able to function at a place that is almost normal or at least bearable, then that is what I will do for now.
Please keep praying for me. Keep reading as I post. I will post updates and things I learn along the way. I will also post blessing from God's word that he uses to help and guide me through this journey.
Till He comes,
Robin
I have 6 beautiful children. I have one amazing hubby who loves me very much. My family is my biggest support group!! My oldest son is only 10 years old and has taken over most of breakfast and lunch cooking. He has been helping a lot with dinner as well. My twins who are 9 years old have started taking over the laundry. Older son and I still load washer and he switches it, but they get it and fold it and hang it all up. Then they have the two little boys help them put it all away. I truly feel blessed!
Physically, I feel lousy, but this is part of my life that I will have to accept and stop commenting on how terrible I feel. I started my Lyrica but honestly I don't feel a difference at all. I even took two pills. So I will see what the doctor wants to do. From what I was reading on the support group for Fibro, Lyrica only works for 50% of people. Also many have had terrible side effects. So hubby is watching me closely to make sure I don't develop them and if I do call the doc right away.
I have heard so much about Fibro not being real. I have also heard some say that a chiropractor, eating better, and exercise will cure it. For some people I am sure that works. For many though it doesn't. You can go back and read through my last post about what Fibro actually does. A person with fibro has an issue with the nerve sensory in their body. They feel too much, so it causes pain. Just simple things like my son poking me to get my attention feels like someone stabbed a knife into my arm. So it is important to remember that every person with fibro is different and needs treatment different than another person with it. It affects each person differently.
What I do know is that my GOD said he will be my guide. He told me that he will supply my need. To many people it may seem crazy to not go searching for a cure or a relief, but honestly that is not what the LORD put me on this earth to do. I can't spend all my time researching for things to help with this. I just can't. Not to mention trying this and trying that is expensive. So for now I am putting myself in the hands of my doctors. This is what my husband and I feel we should do. Yes I have praying and sought the LORD. If he leads me to other ways I will look into them. For now we truly believe that my doctor knows what he is doing and wants to help me live a full life without pain if possible. If that means trying a couple meds to see which fits, I will do it. I have 6 children to tend to, a hubby that needs me, a house that needs me, and a church that needs me. If meds are what it takes to get me to be able to function at a place that is almost normal or at least bearable, then that is what I will do for now.
Please keep praying for me. Keep reading as I post. I will post updates and things I learn along the way. I will also post blessing from God's word that he uses to help and guide me through this journey.
Till He comes,
Robin
Tuesday, August 7, 2012
At the Rhuemy today
Can I just say God is sooooo good! I am surrounded by such great doctors that have been so very helpful and so caring. Thank you for all your prayers for me as I continue this long road.
So today I went to see the Rhuemy. He remembered me. I handed him my last post from here so he could see everything I am dealing with. He read through some things here and there and then asked questions. I was totally shocked when he questioned me about my GI issues and was almost word for word what I was feeling although he hadn't even read that part of the paper yet. (how do I knw? it was the second page and he hadn't flipped yet.) LOL He said I have A very severe case of Fibromyalgia. At first I was a little put off and shocked to hear that. Then he explained. It was a HUGE eye opener. It made perfect sense. Here is a little explination of it:
So today I went to see the Rhuemy. He remembered me. I handed him my last post from here so he could see everything I am dealing with. He read through some things here and there and then asked questions. I was totally shocked when he questioned me about my GI issues and was almost word for word what I was feeling although he hadn't even read that part of the paper yet. (how do I knw? it was the second page and he hadn't flipped yet.) LOL He said I have A very severe case of Fibromyalgia. At first I was a little put off and shocked to hear that. Then he explained. It was a HUGE eye opener. It made perfect sense. Here is a little explination of it:
Explanation of Fibromyalgia
We understand that Fibromyalgia is caused by a constant contraction of the membranes that surround in the brain and spinal cord.
Picture this membrane surrounding the brain and the spinal cord. All the nerves coming from the brain and the cord have to pass through this membrane to get to the organs, muscles joints and every other place in the body.
When this membrane is constantly in contraction, the nerves are constantly firing. (Think of what happens when you slightly tap your funny bone).
1 The pain nerves are constantly firing, thus you have pain
2 The sensation nerves are constantly firing, thus sensitivity
3 Muscle nerves are constantly firing, leading to the muscles constantly in contraction
(those tight muscles you feel in the neck and shoulders etc.), leading to lactic acid buildup. This leads to fibrous tissue.
This is why when many of you push yourselves you are in pain for days with a flare-up because you are ripping this tissue.
The sympathetic nervous system is constantly on, thus you’re producing constant adrenalin, and thus sleep is impossible, yet you’re so tired. Excess Adrenalin also interferes with dopamine receptors leading to the “Fibro fog “. This also leads to depression. When the sympathetic is on all the time, the parasympathetic system is off, leading to digestive problems. Food is not totally digested; the bacteria digest the food sitting in the gut leading to methane gas which leads to I.B.S. and Reflux.
This is just about exactly what he told me. Honestly with everything I am going through and feeling it makes perfect sense! BUT...he also said a few other things. He wonders if I am starting Lupus. So he wanted to test more into that one. Many women with Lupus have fibro. It usually starts as just Fibro but then as they get older or sicker it is more obvious they have Lupus as well. Prayerfully that won't be the case with me.
He also mentioned something else. He wanted to test me for another thing, can't remember the name. It has to do with anemia and red blood cells being smaller than normal. It is possible as my mom is also extremely anemic and it is a genetic disorder. So that's something we are waiting on.
He then examined me and definitely said Fibro and IBS. So it is good news to hear most likely not gastropereisis or Lupus. Now Fibro is no walk in the park and will require life changes as well as a new medicine for me. But I have some great doctors that are going to stand by me and help me get better and be able to handle the flare ups.
He is putting me on Lyrcia, which has some side effects but helps with all the nerve firing issues. Prayerfully m y insurance will cover it so I can get some relief. Now on to research to see what I can do to help myself. So much to learn.
Monday, July 30, 2012
Today's appts and thoughts
Today I go for a colonoscopy and the appointment with the Rhuematologist. The prep for the colonoscopy is not easy on my stomach. My hubby and I were afraid I was going to throw it up. It seemed to take a long time to get cleaned out. Hopefully all will go well.
My doctor suggested I make a list of every ailment I can to show the Rhuemy today. After I made the list I just sat there and stared....really? That much. No not every single day, but 75 % of the time I feel most of those things. On "feel good" days I only expereince some of the problems. So I figured just in case anyone was interested I would list them here, also in case I lose my paper! LOL
Daily headache
Fevers between 99.2 and 100.7 frequently. 5 days out of 7
Pains:
My doctor suggested I make a list of every ailment I can to show the Rhuemy today. After I made the list I just sat there and stared....really? That much. No not every single day, but 75 % of the time I feel most of those things. On "feel good" days I only expereince some of the problems. So I figured just in case anyone was interested I would list them here, also in case I lose my paper! LOL
Daily headache
Fevers between 99.2 and 100.7 frequently. 5 days out of 7
Pains:
- Base of skull/neck
- shoulders
- elbows
- wrists
- collar bone
- hips
- knees
- feet
- Muscle pains in arms and legs with weakness
Loss of strength in arms, legs, hands, and feet
Cold hands
Insomnia
Exhaustion
Skin on arms feels rough and bumpy
Get pink patchy areas on arms and cheeks after being in sun
Scalp is senstive, can't wear hair up for long periods of time.
Skin is sensetive, don't like to be touched or rubbed often
Eye twitches seem worse
Severe Anemia with no found cause yet
Pains in my hands with numbness and loss of strength
Skin will feel dry and scaley often
Get small bumps or lines of bumps that are itchy and painful
My eyes are irritated frequently. My right eye gets really sore and red. I also noticed they are very dry often.
Can't stand or sit for long periods of time without pain in hips.
Getting up and walking in mornings or after sitting is painful for the first few steps, sometime hour.
Chest pain daily. Right in the center. Deep breaths hurt.
Extremely forgetful often
Dizziness
Ringing in ears often
Carpel Tunnel in wrists
Vision seems to be go strange. Get blurred vision often. Especially when I look up from what I am doing.
Skin around my eyes seems different. little flaps of extra skin, rough, dry, dark
My tongue and throat are often sore. My tongue will swell and get these sores on it, but not like cold sores.
My throat is often swollen and sore, esp on left side.
Now add in the GI issues
Feel full after small amount of food
Nauseous daily
Weight loss
Constipation when it used to be 3 to 4 times a day!
Bloated 24/7
Regurritate often
Hiatal hernia
Major reflux on two fidderent meds for this
Sometimes feel food is stuck in esophagus
Lots of belching
Just an over all loss of appetite
WOW................... Really?! Yes, really. All of this is exactly what I expericne on a day to day basis. Well you don't look as sick as all that. I know. I am a Mom with 6 kids and life that must go on. Somedays are harder than others. Things aren't getting done at home that I want to get done. You will see me limp from time to time, but really who wants to see someone walking around looking like they are feeling all those things listed above. I mean I wouldn't. I seem to be having a good span the past week. I have really bad days, but not all the time. Praise the LORD for that. Am I dying? No. But this is a life altering sickness that I must learn to deal with. What ever it is.....
Please pray for some answers today.
Thank you!!
Wednesday, July 25, 2012
Strange week
So this week I ended up with a few spots on my chest that got very itchy and painful. But it wasn't characteristic of shingles or really any other kind of rash. But off to the doc I went due to the pain it was causing. With what I was feeling we decided to go with a 5 day round of prednisone to see IF it did anything. Well by the next day I was not having trouble with the rash, but I was having some nasty and miserable side effects from it. So they took me off. We noticed that with only two days of the prednisone my aches, pains, head ache, and the rash went away. By last night my shoulders, hips, neck, and head pain came back. Also yesterday afternoon I developed what looks to be the butterfly rash across my face. It isn't as bad as some get but it was definetly a red burning or blushing look to my cheeks and across my nose. So that was/is interesting. It isn't so bad today but the skin in that area is still hot and uncomfortable.
I recently prayed this way, if I have Lupus Lord let me get sick enough that we can get this thing diagnosed and then deal with it. So, I think the good Lord is ansering my prayer. I don't want to be sick, but I also want a dx and to be able to go head to head with what ever this is. So Please pray with me. I have an appt on the 30th with the Rhuemy. He will be the one to dx me with an autoimmune disease.
Something is wrong. I am dealing with a large list of issues. It's just finding out what it is so I know how to care for myself. One step I am going to start with is going gluten free. I know it helps many who battle gastroparesis and Lupus or Fibro. So it is one thing I can change. I will most likely switch the whole family back because we think it will be healthier anyway. The amount of tummy aches, constipation, and other issues is awful! So hoping it will help everyone.
So that is an update on me. Thank you for praying!!!!
I recently prayed this way, if I have Lupus Lord let me get sick enough that we can get this thing diagnosed and then deal with it. So, I think the good Lord is ansering my prayer. I don't want to be sick, but I also want a dx and to be able to go head to head with what ever this is. So Please pray with me. I have an appt on the 30th with the Rhuemy. He will be the one to dx me with an autoimmune disease.
Something is wrong. I am dealing with a large list of issues. It's just finding out what it is so I know how to care for myself. One step I am going to start with is going gluten free. I know it helps many who battle gastroparesis and Lupus or Fibro. So it is one thing I can change. I will most likely switch the whole family back because we think it will be healthier anyway. The amount of tummy aches, constipation, and other issues is awful! So hoping it will help everyone.
So that is an update on me. Thank you for praying!!!!
Friday, July 20, 2012
Talked with Primary Doctor
Well, I had all that blood work done last week. I was right, possibly. My doctor did an ana test and it came back positive. I had one done a couple years ago. It was positive then also. I guess it has to be higher than 1 in 80. Mine was 1 in 160 right now. So, that means it is positive. Now, does that mean I have an autoimmune disorder? Possibly.
Back when I was dx with Fibro I was sent there due to a positive ana. At that time I didn't have too many symptoms, unlike now. So the Rhuematologist said no, not Lupus. But, now here I am two years later with pain, exhaustion, very foggy brain, and many other sysmtpoms that make us all think Lupus. So back to the Rhuematologist I go. They will do more tests. Also I guess they have a criteria form they use. You have to have 4 of the 11 on the list. I looked at the list and I have at least 5 of the 11. So...hmmmmm
Honestly I am not surprised in the least. I knew something was wrong. I knew there was more to what I am feeling and dealing with. Here is a link about Lupus if you are interested.
http://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.cfm
I will be doing some research on the difference between Lupus and Fibro to see if I can come up with anything. Also to see if there is anything about Lupus and Gastroperesis.
Lots to look into!!!
Back when I was dx with Fibro I was sent there due to a positive ana. At that time I didn't have too many symptoms, unlike now. So the Rhuematologist said no, not Lupus. But, now here I am two years later with pain, exhaustion, very foggy brain, and many other sysmtpoms that make us all think Lupus. So back to the Rhuematologist I go. They will do more tests. Also I guess they have a criteria form they use. You have to have 4 of the 11 on the list. I looked at the list and I have at least 5 of the 11. So...hmmmmm
Honestly I am not surprised in the least. I knew something was wrong. I knew there was more to what I am feeling and dealing with. Here is a link about Lupus if you are interested.
http://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.cfm
I will be doing some research on the difference between Lupus and Fibro to see if I can come up with anything. Also to see if there is anything about Lupus and Gastroperesis.
Lots to look into!!!
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